Chapter One – Introduction

Introduction
A person born with an intellectual disability eighty years ago in the United States
of America (USA) would not be expected to live past their second decade (Carter &
Jancar, 1983). However, in developed countries all around the world, people with
intellectual disabilities are now living longer than at any time in recorded history
(Bigby et al, 2008; Bittles et al, 2002; Buys et al, 2008; Hogg, Moss & Cooke, 1988;
Patja et al, 2000; Yang, Rasmussen & Friedman, 2002). While this improvement is a
very desirable outcome, it is resulting in a new crisis within disability support
organisations and the wider community that remains unresolved: How are a
substantial number of people with an intellectual disability going to be supported
as they start experiencing age-related problems?

This chapter is designed to introduce the reader to the current study of direct care
support workers and their needs as they support people with an intellectual
disability through the varying stages of the ageing process. The chapter provides a
brief background and overview of the need for the current research. The theoretical
framework underpinning the project is described. The significance of the present
study to the quality of service provided to individuals with an intellectual
disability, the training of the staff who assist this group of people, and the
government policy and practice of the disability and aged care sectors is critiqued.
The methodology that the study used is presented, and a key assumption
underpinning the research is identified and discussed. The key terms are defined
and the organisation of various chapters of the thesis is outlined.

1.1 Background to the Study

In recent years, a combination of factors including improved care, new
technologies and the recognition of the right for people with a disability to receive
appropriate medical attention and personal care has seen the life expectancy of a
person with an intellectual disability increase dramatically (Haveman et al, 2009;
Jenkins, 2005a, 2005b; World Health Organization, 2000). The expansion of neonatal
1
knowledge and care has resulted in many individuals surviving childhood illness
and disease that would have proven fatal in previous generations (Ory, Abeles &
Lipman, 1992). The combination of improved medical diagnosis and care
management has now resulted in a situation where individuals are able to live into
adulthood and beyond, even with severe disabilities (Crewe, 1990).

The progress in health and allied care meant that by 1993 a person with a mild
intellectual disability in the USA had a life expectancy of seventy years (Strauss &
Eyman, 1996). Another American study estimated the difference in lifespan
between the standard population and a person with a mild intellectual disability to
be only 2 percent (Janicki et al, 1999). If people who have a specific genetic
disability, such as Down Syndrome, as well as those individuals with complex and
severe associated disabilities, are removed from the total figures, the life
expectancy of an Australian with an intellectual disability now approximates that
of the mainstream (Australian Institute of Health and Welfare, 2000).

For people with Down Syndrome, the increase in life expectancy in the past one
hundred years has been remarkable. Both Australian and overseas studies have
shown that, at the start of the 20th Century, a person with Down Syndrome had a
life expectancy of approximately ten years. By the 21st Century, it had increased to
nearly sixty (Carmeli et al, 2004; Glasson et al, 2002). While the increasing life
expectancy of people with intellectual disabilities has been recognised within the
research literature over the past decade, a significant problem is emerging in
delivery of services to this cohort of people.

A general report on disability services across Australia commissioned by the

Commonwealth of Australia (2009b, p. 4) described the disability system as
“broken and broke, chronically under-funded and under-resourced, crisis driven,
struggling against a vast tide of unmet need”. When a specific focus is placed upon
the emerging issue of ageing and intellectual disability, it is apparent that
government departments responsible either directly for the provision of ageing and
disability services, or indirectly through allocating funding of other organisations

2
to provide these support programs have not successfully developed
comprehensive policies and work procedures. Likewise, relevant models of
practice have not been consistently or widely implemented across Australia (Bigby,
2008a; Kunkel & Applebaum, 1992).

While issues associated with ageing and intellectual disability have been clearly
identified since the 1990s, the current population of Australian people with
intellectual disabilities is the first that has lived in large numbers into chronological
old age and can now reasonably expect to outlive their parents (Buys et al, 2008).
The importance of this issue has also only recently been formally recognised on the
international front with the 2006 Graz Declaration on Disability and Ageing. This
document, which was originally commissioned by the Austrian European Union
Presidency, was designed to provide a focus and emphasis upon the needs of older
people with disabilities (Weber & Wolfmayr, 2006).

The provision of many disability services in Australia occurs through funding by

the various state governments to provide a variety of accommodation and day
support programs for people with intellectual disabilities (e.g. Department of
Ageing, Disability and Home Care, 2008a). However, the changing needs and
requirements associated with ageing are currently not appropriately recognised
within these funding frameworks (Bigby, 2008a). A major problem facing many
disability service providers relates to the fact that there is no state government
mechanism to ensure additional funding to support people with an intellectual
disability as they grow older. A person with a mild intellectual disability may have
only required occasional support to retain his/her independence within the local
community and, as such, will have only received a minimal level of funding.
However, as they get older and their support needs increase, there is no easy
process for these changing needs to be funded appropriately (NSW Ombudsman,
2009).

Many community based supported accommodation services established within the

1980s and 1990s were setup under a ‘block’ funding model. This system was one in

3
which the accommodation provider was granted a sum of money designated to
serve a set number of residents (Edmundson et al, 2005). This system is in contrast
to the predominant current delivery structure in which money is allocated to an
individual rather than an organisation. The issue facing many providers now is
that the block funding money, which was determined on the basis of a person’s
individual need decades ago, is now inadequate to meet the changing requirements
of these ageing residents. While the grant may have received an annual indexation,
this figure has not corresponded to the Consumer Price Index (CPI) and there is
currently no facility to increase the base block funding amount to cope with the
needs of individuals as they age.

Within Australia there are no consistently applied inter-governmental policy

guidelines, either internally within the states’ varying departments or externally
between the state and federal levels, specifically for people with an intellectual
disability who are ageing (Bigby & Pierce, 2008). The consequence of this policy
void is that many services that support people with intellectual disabilities have
been forced to individually determine the best methods to resolve the problem
(Courtenay, Jokinen & Strydom, 2010). This situation has led to a wide range of
different approaches to address the issue and considerable gaps within the support
framework.

1.2 Research Aims and Objectives

Demographic research, such as the 2003 Survey of Disability, Ageing and Carers,
indicates that the rates of disability are not evenly distributed across Australia.
Rural and remote areas, including the Western and North Coast regions of New
South Wales (NSW), are reported as having a higher prevalence of disability than
metropolitan locations (Australian Bureau of Statistics, 2003). Recent studies, such
as that by Dowse, McDermott and Watson (2009), have noted concerns that rural
people ageing with a disability may experience problems not similarly evident in
their metropolitan counterparts.

4
The research goal of the current project is to examine the issues and impact of
ageing upon the provision of intellectual disability services within regional and
remote areas of NSW. The aim is to investigate and determine the emerging issues
in individuals with an intellectual disability who are ageing. There were four
specific objectives that underpinned this research aim:

to examine the current models of service available for people with

intellectual disabilities as they age,
to identify the major issues that direct care staff believe impact most upon
their capacity to provide appropriate support to the target group,
to identify areas within the existing disability training and professional
support framework which do not currently provide direct care staff with the
necessary skills and knowledge to assist people with disabilities as they age,
and
to recommend specific solutions that can be implemented across rural and
remote NSW to address the issue of appropriately supporting people with
an intellectual disability who are ageing.

1.3 Theoretical Framework for the Current Study

There are a variety of different theoretical perspectives for considering the concept
of health in general and, more specifically, the issue of disability. Historically, there
has been a strong focus upon medical models and individual rehabilitation in
mainstream society; however, the past three decades have seen the proposal of an
increasing number of social models of disability (Putnam, 2002). Disability can be
defined within a variety of potentially disparate contexts including public health,
economics, politics, history and feminism. The newer social models facilitate a
greater examination of environmental, community and cultural aspects to disability
than the previous medically orientated frameworks.

The past hundred years have seen a major shift in thinking with respect to the
perception of disability. It has been previously argued that the presence of an
intellectual disability denies the individual ‘personhood’ as a result of a perceived

5
inability for self-awareness. This premise was the basis of many now condemned
practices such as widespread compulsory sterilisation and even euthanasia (Hogg,
2007). Through much of the past century, the dominant conceptualisation of
disability saw it related to a model of deficit. This approach has been challenged by
the alternate view that it is instead a reflection of human diversity (Gilson &
DePoy, 2002).

This movement away from a purely medical model is reflected in changes to the
research focus of the disability sector. From 1970 to 1972, 42 percent of the papers
featured in the Journal of Intellectual and Developmental Disability had a medical
focus. By the 1990s, this figure had dropped to just 7 percent of articles being
framed within the medical model (Foreman, 1997). The World Health Organization
(WHO) had initially defined health in 1948 as “a state of complete physical, mental
and social well-being and not merely the absence of disease or infirmity” (World
Health Organization, 2003, p. 1). This definition effectively categorised the presence
of a disability as inferring the point when health ceased. WHO re-conceptualised
its definition of health in 2001 to incorporate both medical and social aspects
(VanLeit, 2008). These changes in perception were associated with the possible
application of a number of different theoretical models and frameworks, ranging
from diagnostic medical perspectives through to a social constructionist
perspective (Stiker, 1999).

The diagnostic medical approach to disability was based upon the premise of an
underpinning medical problem within the individual. It had an internal focus, with
the belief that the person with a disability was in some way defective when
compared to wider societal norms. This deficit or problem could then be addressed
through medical diagnosis and subsequent intervention (Gilson & DePoy, 2002).
This framework is predominantly derived from the work of Parsons (1964), who
argued that an illness provided the individual with an opportunity to ignore or
discard the normal socially enforced beliefs of the society. However, with this
reduced expectation was an associated insistence upon compliance with curative
medical interventions (Parsons, 1964). People with an intellectual disability would

6
appear to present a significant problem to this paradigm, as the likelihood of
medicine providing a cure for their lifelong problems was minimal. It was argued
that the diagnostic medical framework was applicable to individuals suffering
from a temporary or acute episode of illness, but not necessarily appropriate to
people who were elderly or who had a permanent disability (Cheek et al, 1996).

In contrast to the diagnostic medical approach, the social constructionist approach

to disability accepted and acknowledged that the individual may have differences
in his/her functioning, but that these issues were not necessarily in need of
permanent medical remediation (Shakespeare & Watson, 1997). Instead, the effect
of the disability was magnified by societal devaluation as well as external factors
including a lack of appropriate communication tools, physical aids or modified
environments. The social constructionist approach identified the disability as an
issue associated with both internal and external forces rather than purely in terms
of an individual functional deficit. Social models of disability facilitated a capacity
to examine the roles that wider environmental factors such as personal networks,
the workplace, community integration, religion and cultural beliefs, could play in
the life experience of a person with a disability (Fougeyrollas & Beauregard, 2001).

One of the key components of social models of disability relates to the distinction
between an impairment and a disability (Walker, 1993). An impairment was seen
as an integral component or permanent attribute of the individual, a definition
similar to that inherent to the diagnostic-medical model. A disability, however, was
viewed within the context of the immediate situation rather than being continuous
and unchanging (Hughes & Paterson, 1997). A person was considered to
experience the disability rather than being the disability (Putnam, 2002). For
example, an individual is not autistic, rather s/he is a person who lives with and
experiences autism in a variety of settings and environments. Rather than being
conceptualised purely as a deficit, autism can be seen instead as a difference in
perception (Brownlow, 2010).

7
Two of the key social role perspectives of disability have been normalization, as
championed by Nirje (1969), and Wolfensberger’s 1983 theory of Social Role
Valorization2. Both frameworks were based around the premise of people with
disabilities having the right and opportunity to experience a quality of life similar
to that of any other member of their community and to be valued for their
participation. However, while Social Role Valorization was originally based upon
the principles of normalization, a number of distinctions between the two models
have developed over time.

Normalization was originally developed in the Scandinavian countries of Sweden

and Denmark during the 1940s and 1950s. In 1943, the Swedish Government
appointed a committee to evaluate and consider support options for people who
were considered ‘partially able-bodied’. The committee developed a series of
recommendations and policies regarding service provision, and coined the term
‘normalization principle’ to describe their philosophy in supporting people to
achieve a higher quality of life (Ericsson, 1985). Denmark underwent a similar
review of the rights of people with intellectual disabilities and on 5 June 1959 its
Government passed Danish Act No. 192. This Act was designed to provide people
with disabilities with the opportunity for equality in living standards, with its
introductory paragraph specifically stating that people with disabilities should be
able to experience a life that was “as near to a normal life as possible” (Ericsson,
1985, p. 3).

The primary goal of normalization was for all people with disabilities to both
expect and receive the same rights, entitlements and opportunities as any other
individual in their local community. The concept of normalization was defined as
making available to the mentally retarded patterns and conditions of
everyday life which are as close as possible to the norms and patterns
of the mainstream of society. (Nirje, 1969, p. 19)

2 While English (Australian) spelling has been used throughout this thesis, specific terms or
phrases such as ‘normalization’ and ‘social role valorization’ have been maintained in their
original English (US) format.

8
What was particularly innovative about this definition and the way the
Scandinavian countries considered the provision of programs was recognition of
the need for a long-term approach to support people with disabilities, rather than
simply trying to apply a short term treatment regime to ‘fix’ the problem.

Nirje, the ombudsman of the Swedish Association for Retarded Children,

promoted the ideas of normalization at many conferences across Europe. He also
contributed two papers on the philosophy of normalization to the 1969 United
States President’s Committee on Mental Retardation. The collection of papers from this
Committee was edited by Kugel and Wolfensberger (Nirje, 1992). The impact of
Nirje’s thinking was demonstrated in Wolfensberger’s description of normalization
as the
use of culturally normative means (familiar, valued techniques, tools,
methods), in order to enable a person’s life conditions (income,
housing, health services, etc.) which are at least as good as that of
average citizens, and to as much as possible enhance or support their
behaviour (skills, competencies, etc.) appearances (clothes, grooming,
etc.) experiences (adjustment, feelings, etc.) and status and reputation
(labels, attitudes of others, etc.). (Wolfensberger, 1980, p. 80)

After initially advocating this concept within the USA, Wolfensberger developed
his own theory based around the principles of normalization, which he termed
Social Role Valorization. Wolfensberger (1983, p. 234) presented Social Role
Valorization as a scientific theory that was “universal, parsimonious and congruent
with social and behavioral sciences”. Wolfensberger saw the primary objective of
Social Role Valorization being to help establish and support people with disabilities
to obtain and maintain socially valued roles within their local community. He
believed that, if a person was perceived to have a valued social role, then that
person was more likely to be able to access pleasurable or rewarding objects or life
experiences that were available within their society, or at least be presented with
opportunities for obtaining these socially desirable things (Wolfensberger, 1983).
Social Role Valorization proposed that people with disabilities were devalued
members of the society and that this negative perception by the wider society was
associated with victimisation and loss of control (Wolfensberger, 2000). In order to
overcome their devalued status, Social Role Valorization attempted to increase the

9
perceived value of people with disabilities through both image enhancement and
skill development (Wolfensberger, 1983).

Perrin and Nirje (1985) were particularly critical of Social Role Valorization in
relation to the freedom of choice for the person with a disability. One of their main
problems with Social Role Valorization was that it imposed societal beliefs upon
people and, in order to attain valued social roles, the individual choice of the
person could be over-ridden. What was particularly concerning was the possibility
that force may be used, if necessary, when the choice of the individual conflicted
with the perceived normalised behaviour. Perrin and Nirje’s argument is
exemplified by the scenario described by Bigby et al (2009), in which staff were
more concerned about ensuring that the physical presentation of a client met
community expectation instead of facilitating the individual’s right to make
personal decisions about his/her daily life. It was argued that Social Role
Valorization was too preoccupied with appearance and perceptions rather than the
normalization goal of assisting the individual with the disability to make
meaningful choices about how s/he lived as part of society (Perrin & Nirje, 1985).

In a critique of Social Role Valorization, an example was cited in which a black

woman in North America complained about Wolfensberger’s concepts in a
workshop by saying “You aren’t talking about normalization; you are talking about
making people into upper middle class whites” (Perrin & Nirje, 1985, p. 72). As
with Sigmund Freud, whose theories of psychoanalysis were open to criticism due
to their basis and bias towards a certain class of society (Sandler et al, 1997), Nirje
proposed that Wolfensberger had focussed his theories predominantly around
limited sections of society rather than attempting to encompass more diverse
aspects of the wider community.

Regardless of the criticisms of their respective theories, both Nirje and

Wolfensberger have made considerable contributions to the field of disability. The
normalization principles and their focus upon human rights of people with an
intellectual disability underpin current Australian government legislations that

10
mandate support for individuals to live, integrate and participate in their local
community. Wolfensberger’s adaptation of normalization proposed the concept of
valued status for people with disabilities and provided a framework for service
providers to implement normalization principles. The ongoing effect of the work of
Nirje and Wolfensberger in relation to both normalization and Social Role
Valorization is evident within the current 1993 NSW Disability Services Act (DSA)
and its accompanying ten NSW Disability Services Standards.

This influence can be seen in Standard 5, titled Participation and Integration, which
states that “Each person with a disability is supported and encouraged to
participate and be involved in the life of the community” (Department of Ageing,
Disability and Home Care, 2008c, p. 1). Also Standard 6, entitled Valued Status,
requires all service providers to ensure that
each person with a disability has the opportunity to develop and
maintain skills and to participate in activities that enable him or her to
achieve valued roles in the community. (Department of Ageing,
Disability and Home Care, 2008c, p. 1)

The theoretical frameworks developed by Nirje and Wolfensberger provided the

philosophical underpinnings of these two standards in particular and their work
continues to influence and direct the policies and practices of disabilities services
across NSW.

The current study is conceptualised generally within a Normalization/Social Role

Valorization model of the larger social constructionist theoretical framework. The
goal of the study is to examine the impact of ageing and intellectual disability and
how the wider provision of services by support staff can address underpinning
social disadvantage or discrimination. It is perceived that staff perspectives of how
ageing issues affect daily life are most appropriately considered with respect to the
individual, as well as the wider societal impacts upon the person with the
disability. In particular, the research is designed to review and consider both the
internal and external factors of ageing that impact upon people with intellectual
disabilities. It also examines how these issues affect quality of life and whether
changes to policy and practice in service delivery can achieve a better outcome for

11
the individual. The study also examines how training for staff can be modified to
better support people with intellectual disabilities as they age. A
Normalization/Social Role Valorization model provides the most appropriate
theoretical framework for such an inquiry.

1.4 Significance of the Research

People with an intellectual disability in Australia are likely to live longer than ever
before and, as a group, begin to experience issues associated with ageing that
previous cohorts have not encountered (Bigby, 2004). This emerging phenomenon
presents a considerable problem for both carers and service providers as they have
not historically had to deal with the concurrent issues of ageing and intellectual
disability. The significance of the present study lies in establishing the issues as
perceived by the staff who provide daily support for this group of people. There
has been no widespread in-depth research conducted in either metropolitan or
rural New South Wales (NSW) that specifically asked direct care support staff for
their perceptions and thoughts on how ageing affects the daily life of a person with
an intellectual disability. The investigation ranged from the identification of
specific issues and problems to recommendations for appropriate training
programs and changes to service delivery options.

A widespread absence of input from community services staff with respect to the
content of their training and professional development programs has been
identified by McAllan et al (2005). Other overseas studies have shown that training
programs developed without input from disability workers will not achieve the
desired goals (Oliver & Head, 1990; Whitworth, Harris & Jones, 1999). There is
potential for any specific education and organisational model recommendations
derived from the current study to improve the quality of service provided to
people with intellectual disabilities as they age. In particular, the present research is
relevant and applicable to rural settings, where access to both other community
services sector providers and specialist training organisations have additional
complexities to those experienced in an urban context.

12
1.5 Methodology
A three round Delphi model was utilised to establish a consensus between direct
care staff across rural and regional New South Wales (NSW) regarding their
perceptions and beliefs of the major issues facing people with intellectual
disabilities as they age. A Delphi model was appropriate for this type of inquiry as
it is a method of data collection which can determine group consensus on a given
issue (Rudolph et al, 2009). It is also a useful fit because a wide range of variables
can be investigated with an optimal use of time and resources (Sandrey & Bulger,
2008). A comprehensive justification for the methodology is presented in Chapter
Three - Methodology.

1.6 The Research Setting

New South Wales (NSW) is the most populous state in Australia. It is located on
the south-east side of the Australian continent, bounded by the Pacific Ocean to the
east, South Australia to the west, Queensland to the north, and Victoria to the
south. In terms of geographic area, it is the fourth largest of the Australian states
and has an approximate area of 809 400 square kilometres (GeoScience Australia,
2008a). The capital city of NSW is Sydney, which is also the largest city in
Australia.

The following map, shown in Figure 1, is a pictorial representation of the landmass

of NSW, with some key towns marked.

13
 Figure 1 – Map of NSW
(Source: Department of Environment, Climate Change and Water, 2009).

NSW can be informally divided into four main geographic regions. The coastal and
eastern escarpment areas of the state range from Tweed Heads on the Queensland
border to Eden near the Victorian boarder. The NSW coastline is approximately
2140 kms in length, with a number of inlets, bays and natural harbours (GeoScience
Australia, 2008b). The coastal region is considered to include hinterland areas
between the coastline and the Great Dividing Range of mountains. Sydney, along
with the state’s other main metropolitan areas of Newcastle, Wollongong and
Gosford, is located in the coastal area. The coastal region can be further delineated
into the North Coast, which is generally considered to be areas to the north of
Newcastle; the Central Coast, which covers from Newcastle to Sydney; and the
South Coast, which extends from south of Sydney to the Victorian border
(Australian National Resources Atlas, 2008).

The second main geographic area, the Tablelands, is defined by the Great Dividing
Range of mountains and consists of a series of plateaus running from north to
south. These Tablelands, divided into the Northern, Central and Southern
Tablelands, separate the river systems of NSW, with coastal rivers running to the

14
east to the Pacific Ocean and the inland rivers flowing west to South Australia. The
largest mountain in Australia, Mount Kosciusko, is 2 228 metres high and located
within the Snowy Mountains region of the Southern Tablelands (Australian
National Resources Atlas, 2008).

The Western Slopes form the third main geographic region of NSW. These areas
are located to the west of the Tablelands and are predominantly farming and
grazing lands with fertile plains surrounding the inland river systems (Australian
National Resources Atlas, 2008). Both the Tablelands and the Western Slopes have
reasonably high annual rainfall which has resulted in an economic model based
primarily upon agriculture, although there is also mining activity for precious
metals including gold (Department of Environment, Climate Change and Water,
2008a).

The final geographic area of the state is the Western Plains, which comprises
almost two thirds of the total NSW land area (Australian National Resources Atlas,
2008). A combination of poor rainfall, limited harvestable water from rivers and
naturally high day-time temperatures means that there is minimal agriculture in
the Western Plains. However, there are some successful farming and grazing
enterprises with the economy also supplemented by mining operations
(Department of Environment, Climate Change and Water, 2008b).

A longstanding lack of rainfall in the first decade of the 21st Century has seen the
majority of NSW officially classified as being under drought conditions at various
periods. In May 2008, the commencement point for the data capture stage of the
study, 48.4 percent of NSW was officially in drought, with a further 23.6 percent of
NSW deemed to only have marginal rainfall. During the 12 months of research, the
parts of the state affected by drought increased further and had reached a total of
69.2 percent by October 2008. By December 2009, 80.8 percent of the NSW
landmass was considered to be in drought, with another 14.8 percent of the state
considered marginal. Only 4.4 percent of NSW was classed as having satisfactory
rainfall at that time (Department of Primary Industries, 2009). While the

15
detrimental effects of drought upon the economy and environment of Australian
rural communities are well established (Horridge, Madden & Wittwer, 2005), there
are also considerable social impacts in small communities across regional NSW that
include increased health care needs, reduced access to services and familial
breakdown (Alston & Kent, 2004).

There are a variety of different systems within Australia that attempt to classify
geographic areas based upon their relative population densities and other
demographic features. The Australian Government’s Rural, Remote and
Metropolitan Areas (RRMA) system specifies what regions of Australia are deemed
as rural, remote or metropolitan on the basis of various criteria including
population, rurality and remoteness (Department of Health and Ageing, 2007a).
Under the RRMA system, all geographic areas of NSW outside of the major
metropolitan cities of Sydney, Newcastle, Wollongong and Gosford are considered
to be either rural or remote.

An alternative classification system, the Australian Standard Geographical

Classification – Remoteness Areas (ASGC-RA), was established by the Australian
Bureau of Statistics (ABS) in 2001 and it classified all areas of Australia into five
categories. These categories include major cities, inner regional, outer regional,
remote and very remote (Australian Institute of Health and Welfare, 2008b). Under
the ASGC-RA system, all areas other than the four major cities are considered to be
either inner or outer regional, remote or very remote (Australian Bureau of
Statistics, 2007).

As of 30 March 2010, the population of NSW was estimated to be 7.13 million (m)
(Australian Bureau of Statistics, 2010). The current study is focussed upon the rural,
regional and remote areas of NSW, which excludes the four major cities. These
remaining non-metropolitan areas have an approximate population of 1.6m
(Australian Bureau of Statistics, 2009). Some of the largest population areas within
rural, regional and remote NSW include Tweed Heads with a population of 86 833,
Port Macquarie with 73 870, Coffs Harbour with 70 371, Maitland with 67 621,

16
Wagga Wagga with 61 656, Tamworth with 57 182, and Albury with 49 779
(Australian Bureau of Statistics, 2009).

1.7 Key Assumption

The current research had one key assumption; that the issue of ageing amongst the
cohort of people with an intellectual disability was viewed equally critically across
all regions of rural and regional New South Wales (NSW). This assumption
underpins the research methodology and sampling processes that were utilised
within the study.

1.8 Key Terms

The following list is not designed to provide a comprehensive definition of all
terms used in the text but is presented as an introduction to key concepts used
throughout the thesis. The terms are included below in alphabetical order rather
than in relation to importance or occurrence within the text. Further explanations
and more detailed definitions of specific terms are presented in Chapter Two.

Aged Care Assessment Team (ACAT) – refers to a team of health

professionals who conduct an assessment of an individual’s care needs and
then make recommendations for access to government services. These
services include home based options, transition care designed to assist a
person after a hospital stay, and residential aged care placements
(Department of Health and Ageing, 2009b).
Ageing – for the purpose of the current study, refers generally to any new or
emerging issues that an individual starts to experience which are normally
associated with the later years of life. Ageing, however, is a difficult concept
to quantify, with no universally agreed definition. A more detailed
examination of the definitions of ageing is presented in section 2.2.2 What is
Ageing?
Allied Health Professional – refers to any healthcare professional outside of
the specific fields of medicine, dentistry or nursing. Allied health
professionals include psychologists, occupational therapists,

17
physiotherapists and speech pathologists (Allied Health Professionals
Australia, 2009).
Australian Standard Geographical Classification Remoteness Areas (ASGC-
RA) – refers to the Australian Bureau of Statistics’ (ABS) classification
system. These systems divide the geographic areas of NSW on the basis of
various criteria including population, rurality and remoteness. In NSW, all
towns and areas outside of the major metropolitan cities of Sydney,
Newcastle, Wollongong and Gosford are classified as regional or remote
(Australian Bureau of Statistics, 2007).
Carer – refers to a person who, either through an existing family
relationship or other close connection, provides regular personal care and
support to either a frail older person or someone with a disability
(Department of Health and Ageing, 2006b). A carer is not a paid employee
of a disability organisation; however, they may receive a Carer’s Pension
from the Australian Government.
Day Program – refers to structured alternative day activities provided for
individuals with a disability who are assessed by government as not yet
being ready to enter employment (Department of Ageing, Disability and
Home Care, 2007a). There are currently no government funded day
programs specifically for people with intellectual disabilities who have
retired from a workplace.
Direct Care Staff – refers to individuals who are paid to provide support
and assistance to a person with an intellectual disability. The term is used
interchangeable with ‘disability support worker’ throughout the text.
Similar terms such as ‘employee’, ‘worker’, or ‘disability professional’ are
also used. Direct care staff is considered equivalent to terms used in other
countries such as ‘caregiver’, ‘attendant’, ‘aide’, or ‘personal assistant’.
Dual Diagnosis – in the context of the current study, refers to a situation in
which a person with an existing intellectual disability is diagnosed with a
mental illness (White et al, 2005).
Intellectual Disability – is a recognised term used throughout disability
services across Australia and generally refers to any person with an

18
identified impairment in his/her cognitive functioning. It is considered to
be largely interchangeable with similar terms from other countries including
‘mental retardation’, ‘learning disability’, ‘intellectual or mental handicap’
or ‘developmental disability’ (Leonard & Wen, 2002). A more specific
definition of intellectual disability is examined in section 2.2.1 Definitions of
Intellectual Disability.3
Not-for-Profit – refers to organisations operated with any surpluses or
additional funds being invested into the provision of programs, rather than
returned to shareholders or investors.
Person Centred Planning - refers to a planning process that focuses on the
individual with the disability and how services can be implemented to
empower and support him/her to lead an independent and fulfilling life.
According to the Department of Ageing, Disability and Home Care (2008d,
p. 4) person centred planning “is used to describe and relate to a broader set
of crucial elements, which bring about significant change in the lives of
people with disability”. A more detailed examination of person centred
planning is presented in section 2.5.2 Person Centred Planning.
Personal Care – refers to any assistance that an individual receives to
perform routine daily tasks. These daily tasks are ones that the person
would, in normal circumstances, be able to perform independently, but as a
consequence of his/her disability or ageing needs, are unable to complete
unaided. Some examples of personal care include assistance with
showering, getting dressed, hygiene, mobility and cooking.
Quality of Life – refers to a multi-dimensional assessment or measurement
of a specific individual’s well-being. There is currently no universally
agreed upon definition for this term with respect to people with intellectual
disability in Australia. A more detailed analysis of the term is examined

3 There are occasions where no clear distinction is made in government policy, research
articles and population databases between a person with a disability and a person with
an intellectual disability (e.g. United Nations General Assembly, 2006). Every attempt
has been made to identify when a situation refers specifically to the sub-set of people
with an intellectual disability as opposed to more generic categorisations that
incorporates all disability types.

19
within section 2.5.1 Quality of Life and section 2.5.2 Quality of Life for People
with an Intellectual Disability.
Respite – refers to services provided by both government and non-
government organisations which are designed to assist carers of people with
disabilities through the provision of external staff to facilitate the primary
carer to take a temporary break in his/her provision of support
(Department of Health and Ageing, 2008c).
Residential Aged Care Facility – refers to a specialist accommodation model
for predominantly older people who are unable to continue living at home.
Entry into a residential aged care facility can only occur through referral to,
and assessment by, an Aged Care Assessment Team (Department of Health
and Ageing, 2009b).
Rural, Remote and Metropolitan Areas (RRMA) – refers to the Australian
Government’s classification methodology for determining the areas of
medical practice within Australia. In NSW, all towns and areas outside of
the major metropolitan cities of Sydney, Newcastle, Wollongong and
Gosford are classified as either rural, regional or remote (Department of
Health and Ageing, 2007a).
Successful Ageing – refers to an individual’s ability to maintain his/her
physical health, intellectual functioning and social life as s/he ages. It has a
similar meaning to terms ‘active ageing’ and ‘healthy ageing’. A more
detailed definition of successful ageing is provided in section 2.4 Successful
Ageing.
Supported Accommodation – refers generically to most forms of
accommodation assistance provided to a person with an intellectual
disability (Department of Ageing, Disability and Home Care, 2006).
Supported accommodation is synonymous with other terms, such as ‘group
home’ or ‘residential support service’. However, in the context of this thesis,
it does not include people residing within specialist residential aged care
facilities.

20
1.9 Organisation of Thesis
This thesis is comprised of six chapters. Chapter One, the current chapter, presents
a brief introduction to the study and the theoretical framework for the research. It
provides the overall direction, defines the aims of the study, introduces the
research methodology and describes the research setting. Key terms are defined
and the one underpinning assumption is presented.

The second chapter presents a critical review of the literature relevant to the issues
of people with intellectual disabilities who are ageing. Key terms, including
‘intellectual disability’ and ‘ageing’, are examined and discussed. The history and
development of both intellectual disability and ageing services by government and
non-government providers are reviewed. The relevant government legislation,
including disability and aged care standards, is discussed. Key concepts, including
‘successful ageing’ and ‘quality of life’, are critiqued with respect to their relevance
to intellectual disability. The provision of services to people with an intellectual
disability is discussed with a focus upon the training and education of direct care
staff within the disability sector in Australia. Chapter Two reviews the intersection
of previously disparate issues: ageing and intellectual disability. As a consequence
of the complexity of these issues and in order to appropriately establish the
historical events that have resulted in the current situation, this chapter is
necessarily comprehensive.

Chapter Three commences with a justification of the research methodology and the
exploratory research design employed in the current study. The rural, regional and
remote settings across which the study was conducted are indicated and a general
description of the support services for people with an intellectual disability is
presented. The survey instruments employed in the data collection are described
including the six generic questions that form the basis of the Delphi study. The
procedure for the collection of data and ethical issues relating to the research are
discussed. The chapter concludes with an overview of the data analysis and a
detailed discussion of methodological limitations.

21
The data analysis and results of the study are presented in Chapter Four. The
relevant and available generic demographic data for workers in the disability
sector is reviewed. The demographic data for the participants in the current study
is detailed. The results for each of the questions used in Round One are presented.
An examination of the results from Round Two is given, with any additional issues
for inclusion or areas of disagreement from Round One identified. The data gained
from the six questions in Round Three follows. The chapter concludes with a
summary of the Final Round results as well as the information gained from the
participating organisations’ senior managers.

Chapter Five provides a detailed interpretation and discussion of the data and
results presented in the previous chapter. Important issues relating to intellectual
disability and ageing, as identified within Chapter Two, as well as any emerging
themes, are individually examined within the context of each question. The
findings of the current study are compared to the results of previous relevant
research and considered with respect to the existing knowledge and experience.

The final section, Chapter Six, concludes the thesis. A series of training, policy and
practice recommendations for government, training entities, disability
organisations and direct care staff are proposed on the basis of the results.
Suggestions for further research to extend upon the findings of the current study
are then described. Chapter Six re-examines the significance of the research in light
of the initial goals and the overall key findings. It concludes with a summary of the
entire project.

22
 Chapter Two - Background to the Current Research

Introduction
The purpose of the current research was to establish the main issues facing the
disability sector workforce as large numbers of people with an intellectual
disability begin to experience ageing-related problems. The goal of the study was
to explore how the current policy frameworks, training systems and organisational
structures prepared direct care staff to support their clients with these emerging
issues and to recommend options in order to address any identified gaps within
the existing operational practices.

Chapter Two builds on the introductory information presented in Chapter One. It

provides a more comprehensive examination of relevant terms including
‘intellectual disability’ and ‘ageing’, reviews literature relevant to the field of
ageing with an intellectual disability, examines the various federal and state
government funded disability and ageing programs, and assesses the current state
of training of direct care staff within disability support organisations. The chapter
concludes with a summary of the present situation and the relevance of the current
study.

2.1 Identification of Relevant Literature

A number of searches were undertaken on a variety of electronic resources and
manuals of the relevant literature in order to establish the published research
regarding the issue of ageing with an intellectual disability. The primary sources of
relevant journal articles were through both electronic databases and published
literature reviews. An electronic search in peer reviewed journals of disability,
ageing, nursing and social sciences was the first method employed to identify
pertinent literature. The following electronic search engines were used to aid this
search: Google, Google Scholar, AltaVista, Yahoo, Metacrawler, Informit Online
and ISI Web of Knowledge. The electronic databases searched were: Australian
Public Affairs Full Text, Emerald Fulltext, Gale databases, JSTOR, Science Direct

23
(Elsevier), SpringerLink (Metapress), Wiley Interscience Journals, Proquest Central
(PQ), AusStats, Australian Bureau of Statistics, Academic ASAP, PsycINFO,
MEDITEXT, CINAHL (Cumulative Index of Nursing and Allied Health Literature),
Family and Society PLUS, Pubmed, MEDLINE (MEDical Literature Analysis and
Retrieval System onLINE), RURAL: Rural and Remote Health, and Web of Science.

To assist in the process of successfully identifying and locating the appropriate

research literature a number of key terms and words were employed to help define
the search. Some of the search terms used were accommodation, active, aged, ageing,
aging, care, development, direct, disability, education, elderly, frail, group, handicap,
health, home, intellectual, learning, life, marte, mental, meo, needs, nursing, old, palliative,
quality, region, remote, residential, retardation, rural, support and training. These terms
were used both singularly and in varying combinations during the searches of the
electronic resources. Following this first electronic review of the literature a
number of key authors were identified. These individuals were perceived to have
made a considerable contribution towards the total research quantum in the
relevant area. Their names were then used specifically as the basis for a second
electronic review of the databases. A review was also conducted by manually
searching through relevant publications in the key journals of disability, ageing
and gerontology in order to minimise the possibility that a piece of relevant
literature may be overlooked as a consequence of an inadvertent searching error.

A process of snowballing, in which further relevant research was established by

checking the citations and references of the papers and articles identified through
the electronic database and manual journal searches, was also undertaken. This
system provided a double-checking mechanism, with the number of new articles
found through this methodology decreasing until it was considered that a
saturation point had been achieved. The review of the literature was completed in
March 2010, with no new research after this point being included in Chapter Two.

24
2.2 Introduction to Intellectual Disability and Ageing
This section presents a review of the various definitions of intellectual disability
and the concept of ageing. This introduction is followed by a discussion of the
support structures and issues surrounding an individual with an intellectual
disability who is experiencing age-related problems and how these changes impact
upon the training requirements of the staff who support them. Firstly, the terms
intellectual disability and ageing are discussed with a description of the general
factors associated with these issues. This overview is followed by a summary of the
development of intellectual disability and ageing services in Australia and a review
of the relevant literature regarding the changing needs of people with an
intellectual disability as they age. The current philosophies, policies and funding
frameworks established by the New South Wales and Australian Governments are
described. Finally, the training frameworks for staff members who work with
people with an intellectual disability are examined. While the current study was
designed within a social constructionist framework (see section 1.3 Theoretical
Framework for the Current Study), research from all theoretical models was
considered during the compilation of this chapter.

2.2.1 Definitions of Intellectual Disability

The term ‘intellectual disability’ is currently used in Australia to describe an
individual who has significantly below normal intellectual capacity. Other terms
for intellectual disability outside Australia include mental retardation, mental
handicap, mental impairment, learning disability and developmental disability.
Previously commonplace terms such as ‘idiot’, ‘sub-normal’, ‘handicapped’,
‘moron’, ‘imbecile’ and ‘feeble minded’ are now largely obsolete around the world
due to their perceived negative connotations. In Australia, intellectual disability
has replaced mental retardation because of negativity associated with the term
‘retarded’. Mental retardation is still widely used in the United States of America
(USA), although there are recent signs that the term is being replaced by
intellectual disability. In 2009, the American Journal on Mental Retardation officially
changed its name to the American Journal on Intellectual and Developmental
Disabilities. The editor noted that

25
 in part, the change has been motivated by a desire to avoid the negative
connotations that have come to be associated with the term mental
retardation. I fully endorse this change in terminology because it reflects
our field's commitment not only to our science but to the people whose
lives we hope to improve through our efforts. Quite simply, the change
in terminology is a tangible sign of our respect for, and solidarity with,
people who have disabilities and their families. (Abbeduto, 2009, p. 1)

However, mental retardation is still specified in the current fourth edition of the
American Psychiatric Association’s (APA) Diagnostic and Statistical Manual (DSM-
IV) as the appropriate diagnosis for an individual with an intellectual impairment
(American Psychiatric Association, 2000).

There have been numerous different definitions of what constitutes an intellectual

disability. An early definition within the English legal system was put forward by
the judge Sir Anthony Fitzherbert in the 16th Century. In 1534, he made a
classification that defined a person with below average intellectual functioning as

And he who shall be said to be a Sot and Idiot from his Birth, is such a
Person who cannot account or number Twenty-pence, nor can he tell
who was his Father, or Mother, nor how old he is. (Fitzherbert, 1718, p.
519)

An important distinction also began to be made between a person with a

permanent intellectual disability and a person who was suffering from a mental
illness. The English philosopher John Locke (1689, on-line) noted that

in short herein seems to be the difference between Idiots and Madmen,

that Madmen put wrong ideas together, and so make wrong
propositions, but argue and reason right from them; but idiots make
very few or no propositions and reason scarce at all.

This recognition that there was an inherent difference between a person with an
intellectual disability and a person with a mental health problem was an important
factor in the development of the current definitions.

There is no universally accepted definition of precisely what factors constitute an

intellectual disability (McConnell & Llewellyn, 2002). There are currently four
primary clinical classification systems used in research and service delivery areas

26
to define intellectual disability (Harris, 2006). The World Health Organization’s
(WHO) International Classification of Diseases (ICD) Version 10 - Classification of
Mental and Behavioural Disorders defines intellectual disability as
a condition of arrested or incomplete development of the mind, which
is especially characterised by impairment of skills manifested during
the developmental period, which contribute to the overall level of
intelligence, ie cognitive, language, motor, and social abilities. (World
Health Organization, 1992, p. 226)

WHO also promotes the International Classification of Functioning, Disability and

Health (ICF) which is designed to complement the ICD-10 (Harris, 2006).
Definitions and a framework for the diagnosis of specific diseases and disorders are
provided by ICD-10, whereas the ICF has a focus upon determining individual
functioning through the use of checklists (e.g. World Health Organisation, 2010).
The checklists examine aspects of daily life, including participation and activities,
as well as physical and cognitive capacity (Harris, 2006). The purpose of the ICF is
to assist the ICD-10 in facilitating clinicians to provide a balanced perspective of the
functional skills of a person who may have a disability (World Health
Organisation, 2004).

The American Psychiatric Association (APA) includes a definition of intellectual

disability within its Diagnostic and Statistical Manual (DSM) of Mental Disorders
Version IV Text Revision (TR). This definition states that
the essential feature of Mental Retardation is significantly subaverage
general intellectual functioning (Criterion A) that is accompanied by
significant limitations in adaptive functioning in at least two of the
following skill areas: communication, self-care, home living,
social/interpersonal skills, use of community resources, self-direction,
functional academic skills, work, leisure, health and safety (Criterion
B). The onset must occur before age 18 years. (Criterion C). (American
Psychiatric Association, 2000, p. 42)

The fourth classification system is the Mental Retardation: Definition, Classification,

and Systems of Supports 10th Edition as developed by the American Association on
Mental Retardation (AAMR). The AAMR definition of intellectual disability, or
mental retardation, is

27
 a disability characterized by significant limitations in both intellectual
functioning and in adaptive behavior as expressed in conceptual,
social and practical adaptive skills. This disability originates before
age 18. (American Association on Mental Retardation, 2002, p. 8)

It is worth noting that the age of eighteen mentioned in the AAMR and DSM-IV
definitions is often utilised as a cut-off mark for distinguishing between an
intellectual disability and an acquired brain injury. An acquired brain injury is
deemed to be any impairment of intellectual functioning that occurs over the age of
eighteen as the result of damage to the brain caused by either a traumatic or non-
traumatic injury to the head (Brain Injury Association of NSW, 2009). Any
permanent injury to the brain prior to the age of eighteen is conversely considered
to be a developmental disability, which manifests as an intellectual disability
(Australian Institute of Health and Welfare, 1997).

WHO reported that the ICD-10 was the most commonly used classification system
world-wide, with 62.3 percent of countries utilising it as the basis for determining
intellectual disability. DSM-IV was used by 39.7 percent of countries, and the
AAMR definition by 15.1 percent. The least popular methodology was the ICD,
with 14.4 percent of nations adopting its widespread usage (World Health
Organisation, 2007). In Australia, all four definitions have been used in government
and research settings. While these classification systems are, in many ways,
conceptually quite consistent, the variance in usage between the models has
resulted in data inconsistency with respect to accurately establishing the
prevalence of intellectual disability (Australian Institute of Health and Welfare,
1997).

Intellectual disability has one difference to the majority of other disease or disorder
classifications within ICD-10-AM and DSM-IV-TR. This distinction is that it cannot
be defined or classified as having a single cause or uniform set of distinguishing
features. The classification of intellectual disability cannot be characterised by a
similar starting point or aetiology, with there being in excess of 300 different causes
of intellectual disability identified. Intellectual disability can result from genetic
disorders such as Down Syndrome or Angelman Syndrome, brain damage as the

28
result of birth trauma, and childhood illness such as meningitis or encephalitis.
However, it is noted in DSM-IV-TR that there is no clear or obvious cause for over
40 percent of cases of intellectual disability (American Psychiatric Association,
2000).

A clinical diagnosis of intellectual disability is primarily based upon the measured

Intelligence Quotient (IQ) for the individual. IQ tests were initially developed in
the 1800s by researchers including Binet, Galton and Gastrow as an attempt to
measure a person’s abilities in several areas, including language, numeracy and
problem-solving (Brody, 2000). Many additional personal factors, including
psychological conditions such as depression or anxiety, can affect a person’s IQ
score and, as such, the psychologist or psychiatrist must consider these issues prior
to definitively concluding that a person has an intellectual disability on the basis of
the test scores (American Psychiatric Association, 2000).

Intellectual disability is commonly sub-categorised in relation to its measured

severity, although not all classification systems define any set distinctions. The
three commonly used classifications in Australia are mild, moderate and severe
intellectual disability; however, a fourth category of profound intellectual disability
is also used in some settings (Australian Institute of Health and Welfare, 1997). A
mild intellectual disability is generally diagnosed in Australia if an individual has
an IQ score of between sixty and seventy points, a moderate intellectual disability
with a score of fifty to fifty-nine points, and a severe intellectual disability for any
score under fifty (Australian Institute of Health and Welfare, 1997). DSM-IV-TR
and ICD-10 vary from this IQ categorisation, with both defining borderline mental
retardation for IQ scores between seventy and seventy-nine, mild mental
retardation for scores of fifty to sixty-nine, moderate mental retardation for scores
of thirty-five to forty-nine, severe mental retardation for scores of twenty to thirty-
four, and profound mental retardation for any scores below twenty (American
Psychiatric Association, 2000; World Health Organization, 1992).

29
2.2.2 What is Ageing?
There are numerous different, and sometimes conflicting, definitions pertaining to
the ageing process that people undergo. There is no universally accepted
classification of precisely what factors comprise ageing. It has been variously
described as “changes that take place in the organism through the lifespan – good,
bad and neutral” (Hooyman & Kiyak, 2005, p. 5); the changes that occur over time
that increase the likelihood that an individual will die (Medawar, 1952); and “the
progressive loss of function accompanied by decreasing fertility and increasing
mortality with advancing age” (Kirkwood & Austad, 2000, p. 233). The common
themes of most definitions relate to changes that occur progressively or over time
that result in some loss of function for the individual.

To complicate the fact that there are varying and competing definitions of what
constitutes ageing, determining precisely when ageing commences or when a
specific individual is considered to be old is not simple. Across all of Australian
society, ageing is not an event that can be accurately predicted or timetabled. It is a
process that takes place over an extended period of time and varies between every
person (Bigby, 2004). As such, providing a clear definition of ageing for an entire
population sub-group, such as people with intellectual disabilities, is problematic.
While ageing should not be viewed as a singularity, many attempts to categorise or
define it are usually framed in terms of a specific chronological age. However, this
approach has not resulted in a standard definition of ageing as there are no
chronologically definitive and consistent physical, psychological or social
phenomena associated with ageing that support the establishment of set ageing
criteria in the same way that infancy or puberty can be so defined (Roebuck, 1979).

Research into ageing issues have often utilised the retirement age as an easy
marker to determine the movement from adulthood to old age (Thane, 1989).
Studies have used the ages of sixty or sixty-five because

30
 ‘Ageing’ and ‘older age’ refer to people older than 65 years, reflecting
general community understanding of chronology, life-stage transitions
regarding retirement and the government boundary common between
adult and older age services and supports. (Fyffe, Bigby & McCubbery,
2006, p. 4)

This understanding of ageing appears to be mirrored across many sections of the

community. Society’s conceptualisation of ageing has been explained as follows:
The ageing process is of course a biological reality which has its own
dynamic, largely beyond human control. However, it is also subject to
the constructions by which each society makes sense of old age. In the
developed world, chronological time plays a paramount role. The age
of 60 or 65, roughly equivalent to retirement ages in most developed
countries, is said to be the beginning of old age. (Gorman, 1999, p. 7)

Much of the early ageing research within Western society used the designated
retirement figure as the indicator of when ageing commenced. The Nuffield
Foundation in England funded research shortly after the cessation of the Second
World War to collate and examine information and knowledge on the individual,
as well as the social and medical issues associated with ageing and old age
(Rowntree, 1947). The target group of this research was
men over 65 years and women over 60 years, as these ages have been
established by the Widow’s, Orphan’s, and Old Age Contributory
Pensions Acts of 1925 and 1940 as the earliest ages at which State
Pensions are paid, and in consequence most published statistics
relating to old age take the pensionable ages of 65 and 60 as being
synonymous with the beginning of old age. (Rowntree, 1947, p. 1)

The use of the pension age to establish a point for the commencement of ageing
was “entirely typical of the investigators working in this field after World War II”
(Roebuck, 1979, p. 416). In recognition that this definition was imperfect, Rowntree
(1947) proposed that there were two categories of people above the age of sixty.
One was defined as people who were elderly but still capable of living
independently and the second was for those people experiencing a significant loss
in abilities due to reduced intellectual and/or physical capacity. However, the
report did not explain how to easily make this differentiation across an entire
population and the nominated ages of sixty and sixty-five were still used as the
baseline for determining ageing within the study.

31
Researchers worldwide still continue to use the retirement or pension ages as a
convenient marker in describing the onset of ageing for entire populations of
people (Fyffe, Bigby & McCubbery, 2006). However, the English Government’s
original rationale for nominating a set figure for aged pension eligibility was based
upon questionable logic and purely economic reasons, rather than any specific
medical or societal need. Before the introduction of the 1908 Old Age Pensions Act,
which was mirrored in Australia with the 1908 Commonwealth Aged Pension Act, a
person’s eligibility for aged care assistance varied considerably. The 1601
Elizabethan Poor Law and the subsequent 1834 Poor Law Amendment Act in the
United Kingdom mandated the support of the aged by their local parish but did
not define an age at which a person was eligible (Bloy, 2002). Each distinct parish
retained the ability to arbitrate every case on its individual merits, with people
being supported in age ranges anywhere from their late forties and upwards
(Roebuck, 1979).

It was not until the 1880s that a definition of ageing became relevant in England,
with parliamentary discussions surrounding the introduction of a nation-wide state
administered aged pension system. Various suggestions between fifty and seventy
were proposed as the age for initial eligibility for the pension; however, it was
ultimately economic rather than medical, social or scientific reasoning that
determined the final figure. Three preliminary budgets were established by the
Treasury Department, with the cost estimates based around the payment of five
shillings a week for people over the age of sixty-five, seventy and seventy-five. The
annual cost of introducing a pension at age seventy was found to be more than 40
percent less than at age sixty-five (Roebuck, 1979). Lloyd George, who was
responsible for the Government Bill, confirmed that the deciding factor in setting
the age at seventy was finance. On 15 June 1908, George commented in the British
Parliament that
I think they ought to begin at 70 – old age pensions as such – this is my
answer to the proposal to reduce the limit from 70 to 65. It is because of
the fact that it costs more, that is my answer at the moment. (cited in
Roebuck, 1979, p. 422)

32
In 1925, the British Government introduced the Widow’s, Orphan’s, and Old Age and
Contributory Pensions Act. This new Act entailed a contributory insurance scheme
but reduced the retirement age from seventy to sixty-five years for those making
contributions under the 1911 National Insurance Act. Once again, the logic
underpinning the determination of eligibility for the old age pension was
economic. The primary objective of the government in introducing this change in
legislation was to encourage older workers to retire, freeing up jobs for the younger
unemployed. Future British Prime Minister, Neville Chamberlain, commented on
the Bill, saying “the scheme is going to bring about a reduction of unemployment”
(cited in Roebuck, 1979, p. 423).

The figure of sixty-five is still often used in research today to designate the
commencement of ageing, in spite of the fact there appears limited medical or
social reasons for this decision. The United Nations has recognised this problem
and nominated the use of chronological age as merely a crude mechanism for the
identification of population groups and their respective needs (United Nations
Population Fund, 1998). The use of chronological age categorisations is not
definitive as it fails to take into account individual differences associated with a
variety of factors including environment, culture, personal health and lifestyle
choices, amongst many others. Furthermore, the use of the pension or retirement
age to indicate the commencement of ageing is based upon premises over a century
old and derived from governments’ financial needs, rather than evidenced
reasoning or demonstrated individual needs.

Various different classifications of ageing have continued to be proposed, with the

United Nations generally using the age of sixty to define ‘elderly’ people (World
Health Organization, 2009). There have been some attempts to split the grouping of
aged into smaller sub-sets. As one example, one ageing model defines a person
aged sixty-five to seventy-five as ‘young old’, someone seventy-six to eighty-five as
‘old old’, and people over the age of eighty-five as the ‘oldest old’ (Riley & Riley,
1986). Another methodology defines people between sixty-five and eighty who are
predominantly independent and socially active as ‘third age’ and people who are

33
over eighty years old and requiring more support as ‘fourth age’ (Fyffe, Bigby &
McCubbery, 2006). However, demarcation on the basis of chronological age alone
still implies that there are set timeframes in which all people will start to experience
similar changes and alterations. Individual differences are not successfully taken
into account, which can result in substantially different levels of functional skill
and independence between two people both similarly categorised.

Currently in Australia there are a variety of different government definitions and

criteria that are used in relation to ageing. Generally, a person is eligible for the
Aged Pension once they reach the age of sixty-five. This figure has not changed for
men since the Commonwealth Aged Pension Act was first introduced on 10 June 1908;
however, until recent years women were eligible for the aged pension at sixty. This
figure has recently been standardised for both sexes at sixty-five with the increase
in age for women’s eligibility being gradually phased in until 2017 (Centrelink,
2009a). The 2009 Australian Government’s Budget raised the possibility for a
significant change to the Age Pension, proposing that, from 2017, the eligibility age
increase from sixty-five to sixty-seven years. The need for this change was
premised on the argument that, with the improvements in medical care and
technology, the population is living longer and spending more years in retirement.
The government cites figures that claim only 50 percent of the male workforce in
1909 reached the age sixty-five and they would have spent only eleven years in
retirement, whereas the figure now indicates 85 percent of males will have a
retirement of in excess of nineteen years (Commonwealth of Australia, 2009a). As
with the historical modifications to the aged pension, this current proposed change
is again based upon the financial impost for the government; in this instance those
costs associated with a society that is living longer.

The Commonwealth Aged Care Act of 1997 does not provide a definition of ageing or
nominate when a person is considered to be ageing. There is reference on
government information web-sites and in departmental literature to ‘aged’ and
‘frail older people’; however, these terms are not specifically defined (Department
of Health and Ageing, 2006a, 2009a). The planning ratio that government uses to

34
determine how many residential aged care places are allocated per geographic
region is calculated upon the number of people aged over seventy in that area
(Department of Health and Ageing, 2006a). Access to government funded
residential aged care services in Australia occurs through a formal assessment by
Aged Care Assessment Teams (ACAT), which are funded by the Commonwealth
Government. There are ACATs located across Australia which consist of
teams of health professionals, such as doctors, nurses or social workers,
who provide information, advice and assistance to older people who are
having difficulty living at home. (Department of Health and Ageing,
2009a, p. 12)

The ACAT makes an individual assessment of each person referred to them, and
can approve or deny the individual’s eligibility for residential aged care services,
respite care or other community care packages (Department of Health and Ageing,
2009a). The guidelines for the ACAT assessment process decrees that residential
aged care and community care packages are specifically designed for “frail older
Australians” (Department of Health and Ageing, 2006a, p. 8). No lower age limit is
placed upon access to an ACAT for assessment. However, the guidelines make
specific reference to younger people with disabilities and the fact that
responsibility for servicing this group is held by the various state and territory
governments and not the Australian Government. There remains no clear
definition within the guidelines of precisely what constitutes a younger person
with a disability or when a person with a disability can also be considered to be
ageing.

A number of different chronological ages have been proposed as defining the

starting point of ageing for people with intellectual disabilities. While there is
ongoing debate about whether there is actually a need to distinguish between
individuals with intellectual disabilities and the mainstream population (Bigby,
2004), ages such as forty-five, fifty-five and sixty have been proposed as the
beginning of ageing for this group of people (Gatter, 1996; Janicki & Ansello, 2000;
Leveratt, Bowers & Webber, 2005). Discussions with disability service organisations
across NSW indicate that a cut-off age of sixty-five seems to be applied by some
ACATs as providers indicate it is extremely difficult to get a person with a

35
disability under that age assessed (Dowse, McDermott & Watson, 2009; Nicola
Chirlian, pers. comm., 15 December 2008; Tina Purdon, pers. comm., 15 December
2008). This issue can be particularly problematic for some sub-groups of people
with intellectual disability, particularly those with genetic disorders including
Down Syndrome. Such conditions are linked to early onset of ageing-related
problems, including the development of Alzheimer’s disease in the early to mid
fifties (Torr et al, 2010) and the cut-off age of sixty-five is therefore not appropriate.

The Council of Australian Governments (COAG), which is composed of both the

Commonwealth and all the state/territory governments in Australia, announced
the implementation of the jointly coordinated Young People in Residential Aged
Care (YPIRAC) Program in February 2006 (Council of Australian Governments,
2006). This program has the goal of assisting people with a disability to either move
out of, or avoid entry into, a Residential Aged Care facility. While the program is
generally aimed at individuals aged under sixty-five, which seems to conform to
the informally applied ACAT entry criteria, the NSW Government has specified
that their focus is upon people aged under fifty (Department of Ageing, Disability
and Home Care, 2008b). This prioritisation of people under fifty now appears to
leave a distinct gap in the sector’s service models for people aged between fifty and
sixty-four within NSW. The problem of reduced access for this group of people to
Aged Care Assessment Services has been recognised and identified at an
Australian Government level (Senate Community Affairs Reference Committee,
2007) but no solution has yet been proposed.

2.2.3 History of Intellectual Disability Services in New South Wales

The last three decades has seen a substantial change in the approach of service
provision and support to people with intellectual disabilities in New South Wales
(NSW). The introduction of the 1986 Commonwealth Disability Services Act and the
1993 NSW Disability Services Act have brought about major reforms in the
recognition of the human rights for people with intellectual disabilities.
Historically, people with intellectual disabilities around the world have been
marginalised, demeaned, discriminated against and devalued by society (Stone,

36
1998; Wolfensberger, 1972). When NSW was first colonised in 1788, Governor
Phillip was bestowed with the power to deal with, basically as he saw fit, people
classified as “lunaticks and ideots” (Shea, 1999, p. 22). The definition of what
constituted a ‘lunatick’ or ‘ideot’ was unclear, with the existing medical definitions
and classifications of the time often contradictory and confusing. While some
distinction was being made between people with intellectual disabilities and those
with mental health issues (see section 2.2.1 Definitions of Intellectual Disability), the
models of assistance were not differentiated.

Governor Phillip and his immediate successors primarily placed individuals

considered to be lunatics into the care of a relation or another person who was
thereafter deemed to be responsible for them (Cummins, 1967). However, a rise in
the number of people who would now be diagnosed as having either an
intellectual disability or a mental health issue led to the opening of a specific
asylum facility in 1811 at Castle Hill (Shea, 1999). This response was largely due to
public concern about the number of people with disabilities either wandering the
streets or simply being thrown in Parramatta Goal (Westcott, 2004). The original
Castle Hill Asylum and other subsequent institutions, such as the Tarban Creek
Lunatic Asylum which opened in 1838 and later became Gladesville Hospital, were
the default service environment for the majority of people with an intellectual or
mental disability. Individuals who were deemed to be ‘feebleminded’ were often
placed involuntarily and with minimal assessment into large scale institutions and
mental asylums (Shea, 1999; Williams, 1996).

This process began to change when the NSW Government passed into law the
Lunacy Act of 1843. The goal of this act was for “the safe custody of, and prevention
of offences by persons dangerously insane, and for the care and maintenance of
persons of unsound mind” (State Records Authority of New South Wales, 2007, p.
1). This new legislation defined the necessity for having independent medical
opinions to confirm an individual was in need of care, as there was considerable
concern about potential abuse of the process of institutionalisation in the past.
However, the initial drafting of the 1843 Lunacy Act contained a number of

37
inconsistencies with respect to how people with disabilities should be diagnosed
and cared for and numerous amendments and alterations were made to the Act
over the following years (Shea, 1999).

The 1843 Lunacy Act was eventually replaced by the 1878 Lunacy Act. The
definitions within the 1878 Act were modified, replacing the distinction between
‘persons dangerously insane’ and ‘person of unsound mind’ with the simpler
‘insane person’ and ‘idiot’ (Shea, 1999). These new definitions largely mirror the
current separation between a person who has a mental health issue and someone
with an intellectual disability. An old military barracks in Newcastle was converted
to an asylum in 1872, with part of its purpose being to “separate mental defectives
from the rest of the institutionalised lunatic population” (Westcott, 2004, p. 10). A
separation in how people were supported, depending upon their disability, started
to occur. The predominant form of support for people with intellectual disabilities
remained institutionalisation under both the 1843 and 1878 Lunacy Act; however, it
became more difficult to admit an individual to such care without appropriate
medical review under the 1878 Act (Shea, 1999).

It was not until the mid 1900s that a significant shift away from the highly
segregated large congregate models of asylum care began to take place. This
movement was largely driven by parents who, faced with the option of either
coping on their own or placing their child into an institution potentially housing
thousands of other people with high support needs, started banding together to
form local community based organisations. These parents joined forces to generate
money, raise the public awareness of intellectual disability and to place pressure on
State and Commonwealth politicians to support people with disabilities. In 1954,
the Mentally Incurable Children’s Association was formed in this manner, based
upon “fundraising barbecues, jumble sales, street appeals, lamington drives and
concerts” (Westcott, 2004, p. 14). This same model of community based
organisation was replicated across Australia. Examples of these needs driven
services are still evident today across NSW, with rurally based disability support
organisations such as Challenge Disability Services, Mai-Wel, MultiTask and The

38
Ascent Group all tracing their origins back to this parent driven movement of the
1950s and 60s (e.g. Edmundson et al, 2005; Mai-Wel, 2009).

The rise of these new organisations saw a movement in the 1970s away from larger
institutions towards smaller hostel models that generally housed between twenty
and one hundred people. Other services, such as specialist schools, employment
opportunities, early intervention programs and day activity centres, followed the
initial development of accommodation options (Edmundson et al, 2005). A new
style of support, with a focus on education, training and individual development,
started to compete with the prevailing medical model (Young, 2003). A service
system began to be established in which parents would be advised to “deliver their
children into the lifelong care of local charities” (Westcott, 2004, p. 15) following
diagnosis of an intellectual disability by a doctor. For parents in rural areas, the
options were limited to either providing the care for their child themselves, or
sending the young child away to either a non-government organisation or a
government operated institution.

The release of the 1983 Inquiry into Health Services for the Psychiatrically Ill and the
Developmentally Disabled report (Richmond, 1983), commonly known as the
Richmond Report, provided an impetus to improve services to people with
disabilities, to modify the way services were provided to people with disabilities,
and to enhance the wider community’s understanding of issues facing people with
disabilities (NSW Audit Office, 1997). The Richmond Report was a catalyst in
achieving the next major change in service delivery for people with disabilities
through the introduction of the Commonwealth Disability Services Act in 1986 and the
NSW Disability Services Act in 1993.

These Acts facilitated the development of clear policy directions that moved people
away from institutionalised care and towards community integrated housing
models. Demonstration projects were funded to successfully prove that such
options were indeed viable within both metropolitan and rural Australia (Ward,
2006). The smaller hostel models that had been established during the 1960s and

39
70s, many of which still housed up to one hundred individuals, were broken down
further into group home settings of just a handful of people, or even single
individuals, living separately in their own dwelling (Edmundson et al, 2005). Such
community based housing options have been found to result in increased quality of
life, adaptive behaviours and decision making opportunities when compared to the
traditional institutional care model (Young, 2006). It is noted by Mansell and
Beadle-Brown (2010) that deinstitutionalisation was possibly the biggest reform in
government policy for disability service provision since World War II and that this
change is now well developed in Australia and other developed countries.

While the goals of deinstitutionalisation were appropriate, there are still

considerable issues and problems associated with how this process has been
enacted. There has been ongoing criticism of governments, at state, commonwealth
and international levels (Mansell & Beadle-Brown, 2010) for their persistent failures
to adequately fund the infrastructure and support services associated with closing
large-scale institutions. An example of this criticism is seen with a recent report
which commented that
the closure of institutions was not balanced with the development of
sufficient housing options that had adequate support for people to
build community connections and focus on their psycho-social
recovery. (Mental Health Council of Australia, 2009, p. 23)

In 1998, the NSW Minister for Disability Services announced that all large
institutions would be closed by 2010 (Department of Ageing, Disability and Home
Care, 2006). This policy direction by the NSW Government represented a
considerable shift away from the institutionalised models that had dominated
service provision since the early 1800s. It is worth noting, however, that in 2010
there were a number of large government run institutions still operating across the
state. The NSW Government stated that “In 2005, there is a recognition that group
homes work for some, but not for all, that large residences may offer greater
freedom to some” (Department of Ageing, Disability and Home Care, 2006, p. 6)
and it would appear that there had been a definite move away from their 1998 goal
of closing all such institutions.

40
In January 2006, the Department of Ageing, Disability and Home Care (DADHC)
released a position paper titled Accommodation and Support. Contained within this
paper are a variety of goals for disability service provision into the next decade,
including a desire to see a movement away from group homes and towards
supporting carers to maintain people with disabilities in their own home. This
direction is seen with the statement that
the new disability system will deliver greater levels of assistance and
more flexible options for people with disabilities to live at home with
the support of family and friends. (Department of Ageing, Disability
and Home Care, 2006, p. 11)

The ongoing existence of large institutions appears uncertain, with the comment
that “Large residential centres will close over time. Some will be redeveloped to
provide support for people with complex needs and behaviours” (Department of
Ageing, Disability and Home Care, 2006, p. 13). The government has moved away
from its previous 1998 commitment to closing all institutions by 2010 but it is
unclear whether there is any comprehensive plan for the future of large congregate
residential care for people with intellectual disabilities.

2.2.4 Disability Legislation in Australia

Australia has historically close ties to the United Kingdom and much of its policy
frameworks within government can be traced back to British origins (Lindsay,
2004). The provision of support to people with disabilities had traditionally been
viewed in both countries as an issue purely of health. Section 51 of the 1901
Australian Constitution specified that responsibility for both the funding and
delivery of all health related programs were the sole domain of the various state
governments. However, this clear delineation started to break down in 1908 when
the Australian Government introduced invalid pensions for those people deemed
incapable of supporting themselves. Individuals with an intellectual disability
naturally made up a considerable proportion of people considered unable to
support themselves and, as such, the Australian Government had by default
assumed partial responsibility for funding this group (Lindsay, 2004).

41
The two World Wars saw further changes in direction for Commonwealth
Government funding for disability services. The Repatriation Commission was
instituted in 1919 to assist soldiers with disabilities to gain meaningful employment
upon their return to Australia. In 1948, a few years after the end of the Second
World War, the Repatriation Commission was replaced when the Government
established the Commonwealth Rehabilitation Service (CRS). The purpose of CRS
was to provide training and vocational support services, not just for returned
servicemen, but also other people with disabilities from the wider community
(Lindsay, 2004). A precedent was being established with the Australian
Government assuming responsibility for disability pensions and the funding of
employment orientated programs for people with disabilities, while the various
states continued to provide the health based services.

The Australian Government undertook a comprehensive review of disability

service provision across Australia during the early 1980s. This process, called the
Review of Handicapped Programs, consulted widely with all stakeholders including
people with disabilities and their families. The Australian Government released the
findings of this review in the mid 1980s (Handicapped Programs Review, 1985).
The findings of the Review, called New Directions, formed the basis of the Disability
Services Act passed by the Australian Government in 1986. This Act detailed how
services for people with a disability would be provided, established guidelines for
the delivery of disability services, and also determined actions that could be taken
against organisations who failed to meet these requirements (Lindsay, 2004).

The 1986 Commonwealth Act was a pivotal piece of legislation in facilitating the
inclusion of people with disabilities more widely into their local community. The
Australian Government is currently responsible for the provision of vocational
disability support through mechanisms such as the Disability Support Pension,
Wage Subsidies, Supported Wage System and the Workplace Modification Scheme.
It is also the funding body overseeing the provision of Supported and Open
Employment Services as well as Vocational Rehabilitation Services.

42
The 1993 NSW Disability Services Act, which is modelled upon the 1986
Commonwealth Disability Services Act, is the over-arching legislation covering the
delivery of the non-employment disability programs that are the responsibility of
the NSW Government. These state coordinated services cover options including
residential support, respite and day programs. The objectives of the 1993 NSW
Disability Services Act are to:
(a) to ensure the provision of services necessary to enable persons with
disabilities to achieve their maximum potential as members of the
community, and

(b) to ensure the provision of services that:

(i) further the integration of persons with disabilities in the
community and complement services available generally to such
persons in the community, and
(ii) enable persons with disabilities to achieve positive outcomes,
such as increased independence, employment opportunities and
integration in the community, and
(iii) are provided in ways that promote in the community a
positive image of persons with disabilities and enhance their self-
esteem, and

(c) to ensure that the outcomes achieved by persons with disabilities

by the provision of services for them are taken into account in the
granting of financial assistance for the provision of such services,
and

(d) to encourage innovation in the provision of services for persons

with disabilities, and

(e) to achieve positive outcomes, such as increased independence,

employment opportunities and integration in the community, for
persons with disabilities, and

(f) to ensure that designated services for persons with disabilities are
developed and reviewed on a periodic basis through the use of
forward plans. (New South Wales Government, 1993, p. 1)

The 1993 NSW Disability Services Act mandates for the funding and provision of all
disability services, both government and non-government, across the state. The
NSW Government department responsible for the funding and delivery of
disability services, the Department of Ageing, Disability and Home Care
(DADHC), developed ten Disability Services Standards designed to assist

43
organisations to meet the objectives, principles and applications of principles
contained within the Act. These Standards are:
1. Service Access - Each consumer seeking a service has access to a
service on the basis of relative need and available resources.

2. Individual Needs - Each person with a disability receives a service

which is designed to meet, in the least restrictive way, his or her
individual needs and personal goals.

3. Decision Making and Choice - Each person with a disability has

the opportunity to participate as fully as possible in making
decisions about the events and activities of his or her daily life in
relation to the services he or she receives.

4. Privacy, Dignity and Confidentiality - Each consumer’s right to

privacy, dignity and confidentiality in all aspects of his or her life is
recognised and respected.

5. Participation and Integration - Each person with a disability is

supported and encouraged to participate and be involved in the
life of the community.

6. Valued Status - Each person with a disability has the opportunity

to develop and maintain skills and to participate in activities that
enable him or her to achieve valued roles in the community.

7. Complaints and Disputes - Each consumer is free to raise and

have resolved, any complaints or disputes he or she may have
regarding the agency or the service.

8. Service Management - Each service adopts sound management

practices which maximise outcomes for consumers.

9. Family Relationships - Each person with a disability receives a

service which recognises the importance of preserving family
relationships, informal social networks and is sensitive to their
cultural and linguistic environments.

10. Rights and Freedom from Abuse - The agency ensures the legal
and human rights of people with a disability are upheld in relation
to the prevention of sexual, physical and emotional abuse within
the service. (Department of Ageing, Disability and Home Care,
2008c, p. 1)

There are a corresponding set of disability standards based upon the 1986
Commonwealth Disability Services Act. These Commonwealth Disability Standards differ

44
slightly from the NSW Disability Standards in that they are composed of twelve
items, rather than ten. The first eight standards are identical; however, the final
four Standards of the Commonwealth Disability Service Standards are:

9. Employment conditions,

10. Service recipient training and support,

11. Staff recruitment employment and training, and

12. Protection of human rights and freedom from abuse (Department of

Families, Housing, Community Services and Indigenous Affairs,
2009d, on-line).

The reason for the difference between the State and Commonwealth Standards
relates to the different service focus between the two levels of government. The
Australian Government has carriage of all disability employment programs, whilst
the state governments, including NSW, provide day program and accommodation
related programs. As such, the Commonwealth Standards reflect this distinction
through the specific emphasis upon employment and training outcomes which are
not relevant to state funded programs.

In 2001, the United Nations recognised the need for formal legal agreement
amongst all countries with respect to eliminating discrimination against people
with disabilities. Over the following five years it developed specific legislation
called the Convention on the Rights of Persons with Disabilities to address issues of
equality. This legislation did not mandate any specific new rights for people with
disabilities. Instead, it was designed to clearly prohibit any actions that
discriminate against the general rights of people with disabilities (United Nations
General Assembly, 2006). The Australian Government was one of the original
signatories to the Convention. It was first officially signed on 30 March 2007;
however, it did not enter into force in Australia until 16 August 2008 following its
ratification in New York on 17 July 2008 (Department of Families, Housing,
Community Services and Indigenous Affairs, 2009e). While Australia already had
an established and comprehensive system of disability legislation through the State

45
and Commonwealth Disability Acts and their associated standards, the Convention
on the Rights of Persons with Disabilities represented the first universal and legally
binding protocol to protect the rights of people with disabilities (United Nations
General Assembly, 2006).

Within the disability sector, the key principles of service provision and the over-
arching disability legislation apply throughout the childhood, adolescence and
adult years of all individuals with a disability. However, once a person with a
disability starts to experience age-related changes, some of these essential practices
may be overlooked with the individualised programs either reduced or removed
completely. In some programs, DADHC has a stated target group for service
provision for people aged eighteen to sixty-five (Department of Ageing, Disability
and Home Care, 2007a). In accordance with this position, some service providers
report that their clients are deemed ineligible for certain services once they reach
their sixty-fifth birthday.

The rationale for this decision appears to be based upon the argument that the
primary problem is now considered to be one of ageing rather than disability and
that the individual should therefore be funded and serviced by a different
government department. This policy does not appear to be uniformly applied
across all regions of NSW, with some DADHC officers applying different
interpretations of this target age for services (Nicola Chirlian, pers. comm., 31
August 2009; Tina Purdon, pers. comm., 3 November 2008). The approach is
consistent with the history of policy development by government, which reveals
that it is often dictated by short-term political or cost expediency rather than being
developed in the best interests of people with disabilities (Shaddock, 2003).

2.2.5 History of Aged Care and Aged Care Standards in Australia

As with people with disabilities, the early years of colonial Australia saw the
provision of care for the aged predominantly being undertaken by their relatives
and friends (Sax, 1993). The aged care support system for individuals without a
family network to assist them has been historically based upon government run

46
hospitals and institutions to supplement a variety of charitable and other private
facilities (Gibson, 1998). Over-crowding of the generic hospital system by people
with ageing issues quickly became a problem in the colony of New South Wales
(NSW) and specialist facilities were required to reduce the pressure on the
mainstream system. An example of this care system was the Rookwood Asylum for
the Aged and Infirm which was established in Sydney in the early 1890s.
Rookwood provided hospital style care for those individuals who were in need of
nursing support but were unable to gain such assistance elsewhere (Fine & Stevens,
1998). Rookwood Asylum later became Lidcombe Hospital (University of Sydney,
2009).

In 1901, Federation saw the introduction of national legislation regarding aged

care. The division of care for the ageing was split with the Australian Government
responsible for paying pensions and subsidies to aged care facilities while the
states were responsible for managing the health care of ageing people through the
hospital system (Stein, 1999). Initially, nursing homes were governed by state
legislation as they were deemed to be private hospitals. Private institutions
supplemented the services provided by government but these were predominantly
run by ‘for profit’ providers and were only available to those individuals with
sufficient money to pay for their care (Fine & Stevens, 1998).

The provision of aged care services remained fairly stable until the end of the
Second World War. While aged care was still viewed as being a ‘family issue’, the
Australian Government began to provide more money and incentives for the care
of the elderly (Kendig & McCallum, 1990). The development of the 1954 Aged
Persons Care Act extended the range of providers by making available subsidies
specifically to not-for-profit entities for the provision of hostel accommodation and
self-contained units for aged care (CommLaw, 1954). Initially, nursing care support
was only provided as an additional service to a minority of residents. However, a
further change in how the Australian Government funded nursing beds in the
1960s saw an increase in such placements from around 4 percent in 1965 to 55
percent by 1980 (Gibson, 1998).

47
During the final decades of the 20th Century there was a deliberate movement away
from the provision of congregate residential aged care and towards community
based care that supported people to remain in their own homes. The preference of
many ageing people is to remain in their family home and avoid entry into a
nursing home facility for as long as possible (Davison et al, 1993; Dowse,
McDermott & Watson, 2009); however, it was the financial expense associated with
the prevailing reliance upon institutions, when combined with an ageing
population, that had the most significant impact on the Commonwealth
Government’s policy positions. It became a major driving factor in the Australian
Government’s change towards community based care in the 1970s and 80s, as
noted:

Since 1985, Australia too has been vigorously pursuing a policy of

deinstitutionalisation in aged care. Not only was the Australian
system at that time faced with a rapid increase in potential demand,
it was also a system which was heavily reliant upon expensive forms
of residential care. (Gibson, 1998, p. 13)

The problems associated with the primacy of residential aged care was highlighted
in the 1975 Committee of Inquiry into Aged Persons Housing with specific concerns
raised about the reliance upon institutions and the lack of effective and appropriate
community care programs (Social Welfare Commission, 1975). The 1980s saw
additional government inquiries into the provision of aged care programs. Two of
the most important reviews were seen with the 1982 House of Representatives
Standing Committee of Expenditure, also known as the McLeay Report, and the 1985
Senate Select Committee on Private Hospitals and Nursing Homes, also known as the
Giles Report. Both committees recommended changes to how aged care services
were funded and provided across Australia (Kendig & McCallum, 1990).

The McLeay Report recommended a review of home and community based services.
These recommendations were incorporated into the Australian Government’s 1983
Social Justice Strategy that was designed to bring equality and access to essential
services for all Australians (Australian Government, 1988). The introduction into

48
legislation of the Home and Community Care Act occurred in 1985. This Act brought
together a variety of disparate federal and state community care programs under
the one banner of Home and Community Care (HACC) programs (Howe, 1997).
The 1985 Home and Community Care Act replaced legislation such as the 1956 Home
Nursing Subsidy Act, the Delivered Meals Subsidy Act 1970, State Grants (Home Care)
Act 1969 and the State Grants (Paramedical Services) Act 1969.

The release of these committees’ findings and independent reports in the 1980s
resulted in the development of the Aged Care Reform Strategy by the Australian
Government in 1987. One of the most important recommendations of the Giles
Report was for the establishment of national standards for all nursing homes as
there were only limited external checking mechanisms to ensure individuals
received an appropriate quality of care (Braithewaite et al, 1992). The 1987 reform
strategy resulted in a number of modifications to aged care practices including the
development of national quality standards. Other changes included the
introduction of Geriatric Assessment Teams, now known as Aged Care Assessment
Teams, a charter of Residents’ Rights and Responsibilities and a new funding
model for the delivery of service. One of the primary goals of the new legislation, a
reduction in the reliance upon institutionally based services, was achieved with
only very high support needs individuals being deemed eligible for admittance to
residential aged care facilities (Sax, 1993). As part of this reform process, the
Australian Government adopted recommendations from the Aged Care Reform
Strategy Mid-Term Report, known as the Gregory Report, and assumed complete
responsibility from the various state governments for overseeing the provision of
all residential aged care services (Gregory, 1991).

In spite of the changes designed to improve the system, the provision of aged care
services continued to be the subject of both government and independent review.
One of the primary complaints was that the Aged Care Reform Strategy was overly
complicated and difficult to understand (Australian Law Reform Commission,
1995). These criticisms led to the development of the current over-arching
legislation for aged care services: the Aged Care Act 1997 and the associated Aged

49
Care Principles (Department of Health and Ageing, 2005). Currently in NSW, all
aged care services are required to conform to the Aged Care Act of 1997
(Department of Health and Ageing, 2007b). Providers who offer Home and
Community Care (HACC) based programs also need to conform to the 1985 Home
and Community Care Act.

However, unlike disability services in NSW, there are a number of different sets of
standards applied to aged care. All residential aged care facilities are assessed
against and must conform to the Aged Care Standards (Aged Care Standards and
Accreditation, 2009). However, home and community based care services are often
program dependent with respect to the over-arching standards and may therefore
be covered by the HACC National Service Standards, the National Respite for Carers
Program (NRCP) Standards, the Extended Aged Care at Home (EACH) Standards, or the
Community Aged Care Package (CACP) Standards. In addition, it is noted by the
Australian Government that some providers may have to report against other
standards including Quality Improvement Council Standards (QIC), the Australian
Council on Health Care Standards (EQuIP), International Standards Organisation
(ISO) as well as the Disability Service Standards (Department of Health and Ageing,
2008a).

The lack of one common set of standards for aged care has resulted in a situation in
which many community based organisations will have to conform to, and be
independently assessed against, numerous sets of standards. The Australian
Government has recognised the problems associated with having different sets of
standards and is attempting to address the issue through a review project titled A
New Strategy for Community Care - The Way Forward. The goal of this project is to
review the existing standards, then to develop a set of communal standards and a
reporting framework that meets the objectives of the various ageing programs
(Department of Health and Ageing, 2009d). While some work has been completed
on the mapping of the various standards, the project has not been finalised and no
timeframe for the implementation of any new system has been proposed.

50
2.2.6 Australian Funding of Disability and Aged Care Services
All levels of Australian government have stated policies that mandate for the rights
of individuals with an intellectual disability. These frameworks are designed to
ensure that this group of people have the same ability to access opportunities and
participate in their local community as any other member of the mainstream
population. As the cohort of people with intellectual disability experience an
increase in life expectancy, there has been a corresponding rise in the need for aged
care support for this group. However, a major complicating factor for the provision
of appropriate support services pertains to the fact that ageing and disability
programs are funded by both state and commonwealth government departments.
The current policy frameworks have inherent administrative and bureaucratic
blockages that impede the delivery of appropriate ageing services to people with
intellectual disabilities (Bigby, 2008a).

The Commonwealth State Territory Disability Agreement (CSTDA) is a formal

agreement between the Commonwealth Minister and the relevant state and
territory ministers responsible for the provision of disability services. The CSTDA
specifies the responsibilities for delivering services to people with disabilities
across the states, territories and Australia generically. The current agreement
establishes that the states and territories have responsibility for disability
accommodation and respite programs as well as community support and
community access services.

The Commonwealth retains the responsibility for all employment programs for
people with disabilities (Department of Families, Housing, Community Services
and Indigenous Affairs, 2009a) and also for the payment of the Disability Support
Pension to eligible individuals (Department of Families, Housing, Community
Services and Indigenous Affairs, 2009f). Both sectors of government contribute
towards the costs of providing Home and Community Care (HACC) services to
people with disabilities who reside in their own home. The Australian Government
is primarily responsible for the coordination, funding and regulation of residential
aged care facilities (Department of Health and Ageing, 2009b).

51
The Commonwealth Department of Families, Housing, Community Services and
Indigenous Affairs (FaHCSIA) administers the Australian Disability Enterprises
(ADE) which were recently known as Supported Business Services and historically
as Sheltered Workshops. ADEs are specific business units for people with a
disability who need substantial ongoing assistance to perform a job within a
supported work environment (Department of Families, Housing, Community
Services and Indigenous Affairs, 2009b). The Commonwealth Department of
Education, Employment and Workplace Relations (DEEWR) coordinates the
Disability Employment Services (DES), which assists people with disabilities and
social disadvantage to find and maintain jobs within the mainstream community.
Specialist DES providers assist people with disabilities through ongoing training
and support both prior to commencement and during employment (Department of
Education, Employment and Workplace Relations, 2009a). Both Commonwealth
Departments have a purely administrative function and they are not directly
responsible for the provision of hands-on services. Instead, they oversee the
allocation of funding to third party non-government organisations to deliver the
employment programs on their behalf.

In NSW, the Department of Ageing, Disability and Home Care (DADHC) is the
nominated state government department that oversees the designated disability
services in accommodation, respite and community program areas (Department of
Ageing, Disability and Home Care, 2009a). DADHC differs from its
Commonwealth counterparts in that it is both a direct service provider and a
funding body. In addition to funding over nine hundred organisations to provide
programs to people with disabilities, DADHC also employs in excess of 12 000 staff
in its own disability support sections (Department of Ageing, Disability and Home
Care, 2008a).

As well as the state services provided and overseen by DADHC, the NSW
Department of Health coordinates a number of disability support programs. These
services incorporate the provision of assistive equipment and aids for people with a

52
disability through the Program of Appliances for Disabled People (PAPD), as well
as therapy services including early intervention programs for children with
disabilities, occupational therapy, physiotherapy, psychology and counselling
services (Department of Health, 2009). In addition to the early intervention
programs coordinated by the Department of Health, support is also provided for
school aged children with a disability through the NSW Department of Education
and Training (DET). These programs include the provision of Special Education
teachers, specialist intervention from Learning Support Teams and assistance with
transportation (Department of Education and Training, 2009).

The local government sector is also a key player in the provision of disability
services. Local councils will often have a Disability Services Team, or a combined
Aged and Disability Team, whose role is to identify disability issues in the local
area and to promote an accessible and integrated community. Employees of each
Council’s disability team will often manage an information and referral service and
support local ageing and disability organisations by coordinating joint interagency
meetings. They will also operate specific programs such as leisure activities for
people with disabilities, older people and carers, and the International Day of
People with Disabilities celebrations (e.g. Greater Taree City Council, 2009; Orange
City Council, 2009).

A person with a disability in NSW faces a multitude of different government

agencies at local, state and commonwealth level all providing variants of disability
support services. Aged care services are similarly convoluted with respect to the
over-arching government department. The Home and Community Care (HACC)
Agreement is similar to the CSTDA, with the Commonwealth Department of
Health and Ageing (DoHA) working with the various state departments with
respect to the provision of aged care services. The target group for the HACC
programs are frail older people, younger people with a disability and unpaid carers
who are living in the community (Department of Health and Ageing, 2009a).

53
DoHA retains responsibility for overseeing all Residential Aged Care Facilities as
well as the home based Extended Aged Care at Home (EACH), Extended Aged
Care at Home Dementia (EACHD) and Community Aged Care Packages (CACP)
programs. The provision of funding for these programs is currently split between
the Commonwealth and the individual, who has to provide a monetary
contribution towards the cost of their personal care. The percentage of this
contribution can vary quite significantly from person to person and from program
to program. On average, the Commonwealth Government funds 95 percent of a $40
650 EACH package, with the remaining 5 percent coming from the individual.
However, an average person in a Residential Low Care placement contributes 53
percent of the annual $34 990 cost (Department of Health and Ageing, 2008b).

Commonwealth funded HACC services include specific support programs such as

Meals-on-Wheels and Community Transport as well as personal care, linen
services, home help, home nursing and respite. It can also assist individuals with
home modifications, maintenance and support to access their community. These
services are all outsourced to non-government organisations for implementation
across Australia (Department of Health and Ageing, 2009a).

In NSW, DADHC is funded through the bi-lateral Commonwealth and State Home
and Community Care (HACC) Agreement to directly provide the Home Care
Service. This program assists people with domestic and personal care issues as well
as the provision of respite (Department of Ageing, Disability and Home Care,
2009c). Currently, the Commonwealth Government funds 60 percent of the cost of
the Home and Community Care programs while each of the individual states
covers the remaining 40 percent (Department of Health and Ageing, 2008b). Local
councils also provide a variety of aged care services such as dementia care support
groups and special event functions (e.g. Armidale Dumaresq Council, 2009).

The issue of service provision for people ageing with an intellectual disability has
not been adequately addressed within the current service system (Bigby, 2008a).
Determining which level of government is relevant, and then which actual

54
government department within that tier is responsible for service provision to a
person with a disability, is complicated. However, the situation becomes even more
complex when attempting to ascertain what ageing services the person may also be
eligible to receive. A common complaint from both service users and providers
stems from the considerable confusion that arises from the many different
government funding departments for ageing and disability, as described below:
no firm policies exist that actually provide mechanisms to support
ageing in place, define reasonable expectations, or stipulate which
system or systems – aged care, community care, disability, or health –
has responsibility for funding this strategy. (Bigby, 2008a, p. 81)

While the HACC program specifically mentions support for younger people with
disabilities, it also excludes anyone with a disability who is already receiving
accommodation support. This distinction is based upon the premise that the
individual will be ‘double-dipping’ and receiving commonwealth funding for
support that should be provided by the state funded disability provider
(Australian Council for the Rehabilitation of the Disabled, 2002). However, it
actually often means that people with disabilities who are ageing are effectively
excluded from receiving home care support as their individual needs change
(Bigby, 2008a). This problem is not isolated to Australia, and is similarly reported
in other countries including Great Britain (Bland et al, 2003; Walker & Walker,
1998b).

As an example of this situation, a person with a mild disability who has been
allocated a very small funding package that provides one to two hours per week of
independent living support is not able to access HACC services as they start to
experience additional support needs associated with their ageing (Kerrie Nixon,
pers. comm., 11 December, 2009). There is no easy process for disability
accommodation support money to be increased through the state funding body,
DADHC, and the avenue of accessing generic aged care support is also denied to
people with disabilities who receive accommodation support.

55
This problem was identified by the Australian Institute of Health and Welfare in a
2006 report which commented on the concerns of disability service organisations
by noting
while they are able to provide services to address a wide range of
client needs, the level of those services may be insufficient to fully
meet needs that are becoming more complex as clients age. (Australian
Institute of Health and Welfare, 2006, p. 181)

People with disabilities and older people are effectively considered as two
completely separate groups with respect to support structures funding. Services are
established and funded separately by differing levels of government. The current
CSTDA identifies the need for greater interaction between the ageing and disability
sectors in the various levels of government; however, this goal has not been
achieved (National Disability Services, 2007c). The distinctions and boundaries
between multiple sets of administrative structures result in difficulties in
ascertaining who is responsible for individuals who have issues relating to their
ageing and an existing intellectual disability. While DADHC provides and oversees
both disability and ageing programs, within their own guidelines for accessing
services for people with disabilities there is an exclusion clause covering situations
in which
there are other sources of support available (for example, older people
might be assisted to investigate services available through the aged
care system before funded assistance is considered). (Department of
Ageing, Disability and Home Care, 2003, p. 2)

Discussions with service providers have indicated that this exclusion has been
interpreted by some DADHC officers as a means of declaring anyone over the age
of sixty-five ineligible for disability programs as they no longer meet the guidelines
and a referral to a commonwealth program is the only possible option (Nicola
Chirlian, pers. comm., 31 August 2009). The trend of attempting to transfer the
responsibility for ageing people with disabilities from a state to Commonwealth
Government is not new. Bigby (1998) noted an unwritten, but still implicit, system
at a state level of reducing disability services and attempting to move people
instead into aged care models.

56
It was identified in the 1990s that all levels of government had recognised the
problems presented by ageing with a disability but as yet no specific solutions or
programs had been developed (Kunkel & Applebaum, 1992; Parmenter, 1993). In
2001, it was again recommended that clear policies needed to be developed and
implemented by Australian governments to address the issues of ageing and
intellectual disability (Andrews, 2001). However, there was no change in policy
frameworks at either a state or commonwealth level. Bigby (2008a, p. 80)
commented on this issue, saying that “no systematic development of specific
arrangements for people ageing with ID has eventuated”. In 2010 there is still no
unified government policy direction for ageing and intellectual disability. This
problem is not limited to Australia, with a similar lack of government direction on
ageing with an intellectual disability reported in countries including the USA, UK,
Ireland and Canada (Bigby, 2010).

Over the past two decades, the disability sector in NSW has been attempting to
achieve a transition from the prevailing model of isolationism and segregation to a
newer system of inclusive, individualised and person centred programs
(Department of Ageing, Disability and Home Care, 2006). Medium and large scale
institutions with hundreds of residents living on-mass at the one site have been
closing with the individuals re-located into houses within their local communities
(Bigby, 1999; Edmundson et al, 2005; Young & Ashman, 2004). Much of the policy
development within the disability sector relates primarily to younger people with
disabilities, with the issues associated with the ageing of people only recently being
recognised as a high priority (Bigby, 2004). A distinction between the service
models of aged care and disability is seen in the individually focussed person
centred system now inherent to the disability service provision in NSW
(Department of Ageing, Disability and Home Care, 2008b). The focus of disability
organisations is upon meeting the individual goals and needs of each person with
an intellectual disability. In contrast, many aged care accommodation models are
still based around the premise of massed congregated care, such as residential aged
care facilities.

57
As discussed in section 1.3 Theoretical Framework for the Current Study, the disability
sector has moved from the predominant medical model towards a more socially
inclusive approach. In contrast, much of the policy within the residential aged care
sector relates to dementia and frail aged, with an emphasis upon the provision of
health care. The primary focus of residential aged accommodation services is to
provide appropriate nursing and clinical care within a safe and comfortable
environment (Aged Care Standards and Accreditation, 2009). Residential aged care
services are only available for those individuals who are deemed by an Aged Care
Assessment Team (ACAT) as being unable to continue to maintain an independent
life in their own home environment (Department of Health and Ageing, 2009b).
This framework means that most people assessed as eligible for residential aged
care have experienced a loss in personal skills. The person centred approach
inherent to the disability sector, however, focuses upon the development of new
skills, abilities and experiences. It has been noted that
aged care services are based largely upon a perception of decline,
leading inexorably to death. Demands are therefore few and
expectations lowered. By contrast, disability services are based upon
a developmental approach. (Leveratt, Bowers & Webber, 2005, p. 17)

A number of key elements of the Disability Service Act and cornerstones of disability
service provision, such as individual planning and a person centred approach, are
not necessarily emphasised strongly within the mainstream aged care
accommodation system. One of the most common themes within the
Commonwealth Government’s review of younger people with disabilities within
the residential aged care system was the lack of appropriate individual and person
centred planning (Department of Families, Community Services and Indigenous
Affairs, 2008).

The Ascent Group (formerly known as Challenge Armidale) coordinated the first
national conference in Australia on ageing and disability on 12 and 13 May 1994.
Titled the ‘National Forum of Ageing and Disability’, this conference was attended
by parents, government officials, academics, service providers and other interested
stakeholders from across Australasia. Janet Murphy from the Commonwealth
Government Department of Human Services and Health made a presentation to

58
this forum. In her paper, Murphy commented that there were a number of
principles which should guide government and community with respect to the
issues of ageing with a disability. These included:
People should be able to access services appropriate to their need,

Programs should be flexible enough to allow for special circumstances

of individuals,

People should be able to access packages of support, whether funded

by both or one level of government, in line with their needs,

Identified gaps in service delivery should be addressed as a matter of

priority,

People (young or old) should not be denied access to an appropriate

service on the basis of age alone,

Data collection and analysis should underpin major policy or program

changes, and

Cost shifting between levels of government should be minimised.

(Murphy, 1994, p. 7)

Murphy concluded that these problems were not easily or quickly resolved when
there were multiple levels of government involved. The fact that over fifteen years
have passed since Murphy commented on these issues and yet they are still
unresolved and as current as they were in 1994 indicates that the existing system of
three tiered government bureaucracy is not working for ageing people with
disabilities.

2.3 The Ageing of People with Intellectual Disabilities

Many different factors, such as the health and lifestyle of the individual as well as
her/his own particular genetic makeup, play a role in determining the ageing
process that a person will experience. In the 21st Century, people with an
intellectual disability will generally experience similar age-related issues as the
mainstream community (Haveman et al, 2009). However, ageing within the
intellectual disability population is a relatively new development in terms of a
research focus (World Health Organization, 2000). One of the earliest research
papers on the issue of ageing and disability was written in USA in the early 1960s,
with the report detailing the need for improved planning and additional funding

59
for individuals (Dybwad, 1962). Further research over the following decade was
spasmodic, with papers by Baller, Charles and Miller (1967) and O’Connor, Justice
and Warren (1970) commenting on the changing requirements of ageing people
with a disability who were in residential care placements. Andrews (1972) was one
of the first people in Australia to specifically examine the problems associated with
the ageing of people with intellectual disabilities.

From the 1970s to the 1990s, studies into the ageing and intellectual disability issue
became more prevalent with much of this research undertaken in the United States
and Europe. Studies were conducted around the world into a variety of different
aspects of ageing and intellectual disability including its occurrence (Epple,
Jacobson & Janicki, 1985), predicted life-span (Eyman & Widaman, 1987), language
training opportunities for older people (Kleitsch, Whitman & Santos, 1983),
deinstitutionalisation (Benz, Halpern & Close, 1986), medical problems (Callison et
al, 1971), bereavement and grief (Bonnell-Pascaul et al, 1999), qualify of life (Brown,
1993), and social care issues (Cantor & Little, 1985). Australian researchers studied
issues including demographic details (Bigby, 1994), life circumstances (Ashman,
Hulme & Suttie, 1990), decision making by ageing carers (Grant, 1989), and health
issues (Beange, McElduff & Baker, 1995; Lennox & Kerr, 1997).

The area of ageing with an intellectual disability was not subject to significant
research in Australia prior to the 1990s (Bigby, 2004); however, it has expanded in
recent years and the literature base has rapidly grown. The processes associated
with deinstitutionalisation and community integration, combined with social role
valorization, normalization and other similar philosophies, have contributed to a
greater acceptance of people with disabilities. Recognition of the problems
associated with ageing has occurred in both the government and public media,
with the issue of ageing people with an intellectual disability gaining prominence
in response to this group’s increased life expectancy (Ashman, Hulme & Suttie,
1990).

60
While ageing cannot be easily or definitively aligned with set chronological figures
(see section 2.2.2 What is Ageing?), many Australian Government departments use
the pension age of sixty-five as a starting point for estimating the ageing of the total
population (Australian Government, 2007). From 1991 to 2001, the total number of
people in Australia over the age of sixty-five increased by 22 percent. It was
predicted that the proportion of people over the age of sixty-five will continue to
increase until at least 2021, when this cohort will form approximately 18 percent of
the national population (Department of Family and Community Services, 2002). In
2006, the average life expectancy of an Australian female was estimated to be
eighty-three and a half years, with this figure decreasing to approximately seventy-
nine for males (Australian Institute of Health and Welfare, 2008c).

The population of people with an intellectual disability has also followed a similar
trend to the mainstream with the past years seeing an increasing proportion of
people over the age of sixty-five (Bigby, 2004). An American study has estimated
that there is now only a 2 percent difference in life expectancy between the
mainstream population and people with a mild intellectual disability (Janicki et al,
1999). A study of people in Western Australia showed that the life expectancy of a
person with Down Syndrome was approaching that of the general community
(Glasson et al, 2002). It was, however, noted by Torr et al (2010) that the life
expectancy for people with Down Syndrome would plateau in the sixties as a result
of the likelihood of early onset Alzheimer’s related death in this group. Australian
research by Bittles et al (2002) made a series of predictions of life expectancy,
differentiated on the basis of the extent of the intellectual disability. This study
predicted that people with a mild intellectual disability would have a life
expectancy of seventy-four years. This figure dropped to sixty-seven years for a
person with a moderate intellectual disability while individuals with severe and
profound intellectual disabilities were envisaged to have a life expectancy of fifty-
nine years.

As a consequence of the variance in data collection and classifications of

intellectual disability (see section 2.2.1 Definitions of Intellectual Disability), an

61
accurate determination of the number of people with an intellectual disability in
NSW is not currently available. Figures from government agencies estimated that
around 0.5 percent of the population has an intellectual disability (Australian
Institute of Health and Welfare, 2000). The Australian Bureau of Statistics (ABS)
1993 Survey of Disability, Ageing and Carers concluded that there were 328 000
people, or 1.86 percent of the total population, with an intellectual disability
(Australian Bureau of Statistics, 1993). It is worth noting that there were limitations
to this survey with some sub-groups, such as prisoners, not included in the figures
and, as such, the actual figure was likely to be higher. The ABS 1998 and 2003
Surveys of Disability, Ageing and Carers used different criteria and methodologies;
however, it was believed that the overall percentage of people with an intellectual
disability had remained approximately the same as the 1993 Survey results
(Australian Bureau of Statistics, 1998, 2003).

However, in 2008 the Australian Institute of Health and Welfare (AIHW) reported
that 588 700 people in Australia had an intellectual disability, a figure that
represented approximately 3 percent of the total Australian population. In excess of
150 000 people with intellectual disabilities were aged over sixty-five according to
this study (Australian Institute of Health and Welfare, 2008a). It was also reported
that there were 351 000 people with an intellectual disability with “severe or
profound core activity limitation” (Australian Institute of Health and Welfare,
2008a, p. 3), which represents 1.8 percent of the total Australian population. This
figure of 1.8 percent equates approximately to the ABS 1993 survey for the total
proportion of people with an intellectual disability and may be reflective of
variations in diagnosis and classification over the years.

2.3.1 Different Factors of Ageing with an Intellectual Disability

The ageing of people with an intellectual disability is a complex process and can be
influenced by a large variety of factors. Within the different sub-groups of people
with an intellectual disability, the influence of these factors will have a varied
impact and intensity. It is important to recognise the distinction between how
ageing issues affect a specific individual in contrast to the ageing of the entire

62
population or sub-groups of it (Gibson, 1998). The issues associated with the ageing
of a population of people are primarily viewed with respect to the key
demographic factors that become evident within that group. Changes in these
demographics can have the potential to cause significant and substantial impacts
upon the society. The Australian Institute of Health and Welfare (1999a, p. 3) noted
that “population ageing is a result of the interaction of three basic demographic
components: fertility, mortality and migration”. The ageing of the people with an
intellectual disability sub-group of the Australian community is largely attributable
to the decreasing mortality rate, particularly during the early years of life
(Australian Institute of Health and Welfare, 2000).

The statistical increase in life-span has resulted in a large number of people with an
intellectual disability starting to experience ageing-related problems and to require
specialised aged care services; a situation that the government and wider
community is largely ill-equipped to deal with at the present time (Bigby, 2008a). A
natural consequence of the increased life expectancy is a larger total number of
people with an intellectual disability. This change will naturally result in even
greater pressures being placed upon the existing residential services and the staff
employed by them. Services for people with disabilities in Australia are currently
underfunded in many areas, with substantial unmet needs (Australian Institute of
Health and Welfare, 2002; 2008a). Within these identified unmet needs, one of the
most critical factors is the provision of residential support services (Australian
Institute of Health and Welfare, 2008a; Stancliffe, Lakin & Prouty, 2005).

In contrast to the ageing of the entire population of people with an intellectual

disability, the ageing of a specific person is best considered with respect to the
impact the individual actually experiences as a direct result of the ageing process.
These factors may include changes or reductions in the person’s living skills in
areas such as sensory, motor, behaviour and cognitive functioning. Individuals will
each experience ageing in a manner unique to them, and the speed with which
s/he ages will be dependent upon a variety of issues such as biology, psychology,
social interactions, support structures and culture (McPherson, 1990). One of the

63
most important aspects of ageing that needs to be recognised by service providers,
staff and families is the fact that it is not a one-off event; it is a process that takes
place over the entirety of a person’s life. Each individual will age at a different rate
and will experience age-related changes at different times of his/her life. This
viewpoint is summarised succinctly with the statement that “‘being old’ is not a
fixed static state identical for all people, but rather an evolving process affecting
each person differently” (Bigby, 2004, p. 41).

Chronological ageing should only be seen as an average benchmark against which

assessments can be measured to establish a comparative level of functioning. The
natural differences that exist between individuals will mean that there is a
substantial variance in the age at which certain factors may become significant.
Nonetheless, ageing is still often defined simplistically upon the basis of an
individual reaching a specified chronological age. Within the mainstream
community, ages such as sixty-five, seventy-five and eighty-five are commonly
cited as the basis for delineation (Bigby, 2004). Many government departments will
not even consider the ageing needs of an individual unless they have met one of
these artificially determined anniversaries (Nicola Chirlian, pers. comm., 6
February 2009). The fundamental flaw with using chronological age as the prime
determinant for support is that it implies individuals will acquire a range of
problems upon reaching a certain benchmark. While it may appear self-apparent
that a multitude of age-related issues do not suddenly appear upon a person’s
birthday, the lack of flexibility within aged care guidelines, assessments and
systems is not necessarily conducive to the concept of an ageing process. Instead it
is often predicated on reaching a pre-determined chronological milestone.

Ageing is a multi-factorial issue and cannot be viewed purely in terms of

chronology in isolation. Ageing incorporates changes in three primary areas: social,
psychological and physical/biological. In the past, there was a focus
predominantly on the medical and biological aspects associated with ageing.
However, in recent years there has been an increasing recognition of the
importance of the psychological and social impacts as people grow older (Hayslip

64
& Panek, 1989). Ageing is “a holistic, subtle, individual, progressive, and lengthy
process of change and adaptation” (Lubinski & Higginbotham, 1997, p. 5). The
biological factors of ageing are primarily associated with the changes in a person’s
ability to perform everyday tasks that can be attributed to the deterioration of
specific physical functions and also in terms of the overall health of the individual
(Haveman et al, 2009). Psychological ageing refers to the responses that each
individual has to the “biological, cognitive, sensory, motor, emotional, and
behavioural changes and to external environmental factors affecting these changes”
(Australian Institute of Health and Welfare, 1999a, p. 4). These changes can
manifest themselves in terms of the person’s mental capacities, such as memory or
the learning of skills, as well as the individual’s personality and emotional state
(Baltes & Baltes, 1990).

Social ageing is the way in which a person’s level of involvement with their local
community changes, often through a reduction in her/his capacity to interact with
the social environment (Minichiello & Coulson, 2005). The social impact of ageing
can be seen through an alteration in the relationships with family members and
friends, as well as changes in role within the wider community of work and
recreational organisations (McPherson, 1990). Social ageing also incorporates
aspects of the individual’s history, which takes into account the various
opportunities and discriminations the individual may have encountered and how
these experiences have shaped his/her life (Haveman et al, 2009). The physical,
psychological and social perspectives to ageing each emphasise different associated
changes.

While all of these factors are often considered to develop almost independently of
each other, Minichiello, Browning and Aroni (1992) proposed a biopsychosocial
model that considered the interplay between the three perspectives. They argued
that there was a complex inter-relationship between the physical, psychological
and social perspectives of ageing. It was considered this relationship could be
understood better by examining all health related concerns in conjunction with the
psychological and social impacts caused by the decline in physical wellbeing.

65
In addition to the effect that these changes will have upon the individual who is
ageing, there are a number of other issues associated with the expectations,
prejudices and biases of the individual’s family, the staff that support him/her and
the wider community. There are considerable societal pressures and beliefs
regarding all people who are ageing, which can manifest in discrimination and
devaluation (Minichiello & Coulson, 2005). For a person with an intellectual
disability, the process of ageing can compound of the existing stereotypes and
disadvantages they have experienced throughout their life (Bigby, 2004).

One of the other significant problems associated with the belief that age is a specific
time linked event is that family members and support staff may start to interpret all
health, well-being and behavioural issues purely in light of a perception that the
individual is ageing. It is easy for families and service providers to assume all
changes in a person are age-related, rather than ensuring that the same medical
checks are performed as with a younger person with a disability who presented
with similar symptomatology.

2.4 Successful Ageing

The recognition of the problems associated with using a set chronological figure as
a determinant for the commencing of ageing was one of the driving forces behind
the development of theoretical models that more realistically defined the ageing
process. A number of alternative definitions have been hypothesised that attempt
to more accurately describe the ageing of a person through incorporating the
associated physical, social, cultural and psychological components of the ageing
process. The World Health Organization (WHO) (e.g. World Health Organization,
2000) and researchers such as Janicki (e.g. Janicki & Dalton, 1999) have attempted
to redefine ageing in a more positive light and, through this change, more
effectively evaluate its non-chronological aspects.

The concept that ageing should not simply be viewed in negative terms and that
ageing is not necessarily linked to a complete decline in functioning has been

66
written about for centuries. The Roman senator Cicero argued strongly in his essay,
titled Cato Maior de Senectute, that old age provided an opportunity for continued
productivity and contribution to society (Cicero, 44 BC). Similarly, William
Shakespeare, in The Merchant of Venice, promoted the concept that people may be
happier in their later years, exemplified by Gratiano’s quote that “with mirth and
laughter let old wrinkles come” (Shakespeare, 1598, Act Two, Scene One, online).
Henry Wadsworth Longfellow was another who considered growing old was not
necessarily an undesirable thing and that, with age, could come other
opportunities. His poem, Morituri Salutamus, noted that
Age is opportunity no less,
Than youth itself, though in another dress,
And as the evening twilight fades away,
The sky is filled with stars, invisible by day. (Longfellow, 1825, online)

In more recent years, the concept of ‘successful ageing’ has been proposed
(Battersby, 1998) and, in part, attempts to address the belief that ageing is
inherently associated with an inevitable and significant decline in individual
functioning.

The concepts of successful ageing are largely interchangeable with similar terms
such as ‘healthy ageing’ or ‘active ageing’ (Barr, 2001). The term ‘successful ageing’
was first proposed in the 1960s by researchers such as Havighurst (1961) and
Williams and Wirths (1965). The development of this concept was in direct
competition to ‘disengagement theory’, which promoted the premise that older
people deliberately chose to remove themselves from their usual daily routines in
order to prepare themselves for inevitable death (Cumming & Henry, 1961).
However, it was not until the 1980s and 90s that successful ageing started to gain
widespread acceptance within the gerontology sector (Butt & Beiser, 1987; Rowe &
Khan, 1987).

Successful ageing does not have one set definition (Depp & Jeste, 2006) but is
considered to refer to an individual’s ability to maintain his/her physical health,
intellectual functioning and social life as s/he ages (Battersby, 1998). An important
component of successful ageing involves ensuring that individuals still retain the

67
right to make decisions and be involved in all practical aspects of their daily life
(Rowe & Khan, 1997). Affirmative words such as ‘successful’ or ‘healthy’ are used
to reinforce the perception that ageing is not necessarily negative and that an
individual can still have a high quality of life as s/he grows older. The ageing of a
person can be considered healthy or successful when

an individual retaining his or her capacities to function as

independently as possible into old age and promoting the belief that
those who age successfully are able to remain out of institutions,
maintain their autonomy and competence in all activities of daily
living and continue to engage in productive endeavours of their own
choosing. (Janicki, 1994, p. 146)

One approach to successful ageing sees it conceptualised across the entire life cycle.
The Lifecourse perspective to ageing reviews both current and prior living
environments, culture and actions of the individual (Kuh, 2007). The ability to live
independently as the person ages is considered to be the culmination of her/his
life experiences and circumstances. The Lifecourse approach considers and
incorporates the impact that society and culture has upon the ageing process
(Priestly, 2003) which, considering the many barriers and discrimination that
people with disabilities report experiencing (e.g. Abbott & McConkey, 2006), are
issues of particular relevance. It involves factors that can be positively or negatively
influenced by the individual such as healthy and appropriate lifestyle choices, as
well as uncontrollable factors including socio-economic disadvantage and
environmental hazards (National Disability Authority, 2006). The Lifecourse
perspective on successful ageing takes into account the often very different
timeframes associated with the ageing of people with an intellectual disability, as
well as the potentially longstanding experiences of discrimination and
disadvantage (Bigby, 2005b).

Baltes and Baltes (1990) proposed a model focussing upon how people age
successfully rather than merely noting the meeting of certain set criteria. They
considered successful ageing to be reflected by the capacity of a person to
compensate for any losses associated with ageing in one life domain with gains in
another aspect of living. The research over the past two decades has continued to

68
focus upon the processes of successful ageing and in developing models that detail
how the issues of ageing can be managed in order to continue to enjoy and
participate in normal activities. Successful ageing is not viewed as a perfect
scenario in which no changes occur; rather it is conceptualised as supporting
people to maintain their quality of life by appropriately coping with, and adapting
to, any negative issues as they arise (Ouwehand, de Ridder & Bensing, 2007).

2.4.1 Successful Ageing for a Person with an Intellectual Disability

The concept of successful ageing is as applicable to the cohort of people with
intellectual disabilities as it is to the mainstream population. While it may seem
apparent that people with intellectual disabilities face a number of additional
barriers in order to age successfully when compared to the mainstream
community, it should not be automatically assumed that every individual will
experience significantly worse problems (Fyffe, 2003). The World Health
Organization (2000, p. 7) commented specifically upon this issue in saying
it is important to underline the fact that many ageing persons with
intellectual disabilities may be just as healthy as other older persons
without life-long disabilities.

However, the reality is that there are a number of factors that do impact upon the
capacity of people with intellectual disabilities to age successfully. The funding of
this group as they age is particularly problematic, with considerable confusion
between the various tiers of government regarding who is responsible for the
provision of services to this group (see section 2.2.6 Australian Funding of Disability
and Aged Care Services). There are arguments regarding what constitutes the
person’s main support needs and what are the predominant problems the
individual is experiencing. This approach leads to a focus upon areas of weakness
rather than the continuing strengths of the individual. It can result in a distorted
view that ageing people with intellectual disabilities are more dependent and
require a greater level of care than actually needed. The concentration upon the
care needs of the individual rather than upon the maintenance of existing skills and
abilities can result in a situation in which people with intellectual disabilities are

69
viewed as being non-productive and reliant upon external assistance as they age
(Llewellyn et al, 2004).

It is considered that the generic concepts inherent to the various successful ageing
models are fundamentally consistent with the existing philosophies of the
disability sector in NSW. The underpinning belief that people do not suddenly
develop new problems when a chronological milestone is reached, combined with
the rationale of supporting people to maintain their independence with
appropriate assistance, are important factors in assisting individuals with
intellectual disabilities as they age. Nonetheless, there are a number of specific
issues that must be taken into account when considering how to support the
successful ageing of people with intellectual disabilities.

2.4.1.1 Health Issues

An important aspect of the current population of people with intellectual
disabilities who are ageing relates to their general level of health. As noted by
Bigby (2004), this group is the first generation of people with intellectual
disabilities to reach old age in considerable numbers. Part of the reason for this
change relates to the improved health services provided to people with disabilities
during their childhood. Changes in treatment and attitudes in the past century
have seen individuals with more severe disabilities supported to live past
childhood and into adulthood. However, there is evidence of a generation gap in
which the people with intellectual disabilities reaching older age have
predominantly been those with more minor health issues. This factor is noted in
research in the United Kingdom where they have recognised that
older people with learning difficulties are likely to have lower levels
of learning difficulty than younger cohorts. This difference has
mainly come about because babies with severe learning difficulties
who were born over 50 years ago would have had much less chance
of surviving into adulthood than their contemporary counterparts.
(Walker & Walker, 1998a, p. 126)

The World Health Organisation (WHO) also notes this issue, referring to the
concept of ‘differential mortality’ which is the “tendency for healthier people to live

70
longer. Thus older cohorts may actually be healthier in many domains than
younger groups of persons with intellectual disabilities” (World Health
Organization, 2000, p. 7). The factor of differential mortality may actually be
disguising the extent of the problems associated with the successful ageing of
people with intellectual disabilities, with the full impact only becoming apparent in
the future generations which contain a higher proportion of people with more
severe lifelong disabilities and health related problems. However, even when
accounting for the issue of differential mortality, research shows that ageing people
with intellectual disabilities have a high incidence of many health related problems
(Evenhuis et al, 2001).

One of the major impediments to the successful ageing process is a decline in the
physical and mental health of the individual. As people with an intellectual
disability age many will experience similar health management issues as the
general population (Davidson et al, 2004). People with an intellectual disability
share with the mainstream community many of the same issues associated with the
ageing process; however, they have a series of distinct problems that pose specific
impediments to their quality of life. Scheepers et al (2005) reported on the
significant health disparities experienced by people with intellectual disabilities in
the provision of medical and social services around the world. However, it was
noted that there are cultural differences in the prevalence of certain health issues
around the world (Haveman et al, 2010).

It has been identified in Australia that people with disabilities were significantly
disadvantaged in their health status in comparison to the general community as a
result of socioeconomic factors as well as simple “discrimination and ignorance”
(Durvasula & Beange, 2001, p. 27). It was noted in the A Healthier Future For All
Australians Interim Report that
people with a long-term disability are among the most
disadvantaged, and invisible, groups in our community, with very
poor health status and a health system that often fails to meet their
special needs. This includes people with an intellectual disability ...
as well as people with other long-term physical and mental
conditions. (National Health and Hospitals Reform Commission,
2009, p. 54)

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The report further commented that
there are stark health and access inequalities for people with an
intellectual disability. There are currently over 300,000 Australians
with intellectual disabilities, many of whom have health outcomes at
least as bad as our Aboriginal and Torres Strait Islander peoples.
(National Health and Hospitals Reform Commission, 2009, p. 55)

Individuals with an intellectual disability are likely to experience additional

complications that make appropriate clinical management very important (Beange,
Lennox & Parmenter, 1999). For people with high support needs and limited
communication skills a correct diagnosis can be difficult as the individual may not
be able to accurately convey to doctors what s/he is experiencing (Hogg, 2001). It
was noted by Haveman (2004) that many carers and staff act as the proxy ‘voice’ at
the doctor for people with communication problems and, as such, the actual
prevalence of health conditions may be far higher than currently recorded as a
consequence of under-diagnosis. As the person ages, neither the doctor nor the
individual’s family or carers may recognise the early signs of age-related health
problems. This situation is the result of the fact that they may not have had
appropriate training to identify when a change is due to a deterioration in health,
rather than stemming from behavioural issues associated with the intellectual
disability (Alborz et al, 2003; Lennox, Diggens & Ugoni, 1997).

Both Australian and overseas studies have shown that, even before they start
ageing, people with intellectual disabilities are more likely to have serious health
problems during their lifespan than the mainstream population. An Australian
study by Beange, McElduff and Baker (1995) showed that the sub-group of people
with intellectual disabilities had, on average, five serious medical conditions. It was
believed that, of these five serious conditions, at least half had either not been
previously diagnosed or were not undergoing treatment. It was further reported
that:
People with intellectual disabilities both saw doctors and were admitted to
hospital at twice the rate of the general community,

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 Statistically, more than 50 percent of people with intellectual disabilities
took prescription drugs on a daily basis, with over 30 percent taking more
than one drug per day,
Over 30 percent of people with intellectual disabilities also had epilepsy,
This group was affected by blindness at twenty times and deafness at
twelve times the rate of the mainstream community,
Nearly 10 percent of people with intellectual disabilities had a dual
diagnosis with a psychiatric disability, and
Dental diseases were also extremely commonplace, with 86 percent of
people with an intellectual disability having problems with their teeth or
gums (Beange, McElduff & Baker, 1995).

Further studies in the 15 years since the work of Beange, McElduff and Baker have
continued to reveal a wide range of problems relating to the health of people with
intellectual disabilities. Australian people with intellectual disabilities were found
to be more likely than the mainstream population to be obese (Moore et al, 2004)
and to have higher death rates from cardiovascular disease (Day et al, 2005).
Problems with oral health care is particularly prevalent with significant concerns
being raised in relation to the linkages of periodontal disease to potentially
terminal conditions including stroke and cardiovascular problems (Waldman &
Perlman, 2009). The incidence of auditory and visual problems was reported by
Janicki and Dalton (1998) at levels higher than their equivalent mainstream peers
for American people with intellectual disabilities. Overseas studies by Evenhuis
(1997) and Janicki et al (2002) identified the increased risk of mobility problems in
ageing people with intellectual disabilities from a variety of underlying causes,
including musculoskeletal decline and bone fractures.

Durvasula, Beange and Baker (2002) examined the mortality of people with
intellectual disabilities in Sydney and they concluded that, if regular health checks
were conducted, some deaths within this sub-group were potentially avoidable. It
was also estimated that 57 percent of Australians with an intellectual disability
aged under sixty-five had a dual diagnosis of a psychiatric disability and that 24

73
percent of individuals experienced communication and speech problems
(Australian Institute of Health and Welfare, 2008a). High levels of health care
problems are strongly linked with a number of genetic conditions associated with
an intellectual disability. For example, syndromes such as Angelman, Cornelia de
Lange and Cri du Chat are all associated with specific health problems such as
diseases of the nervous and digestive systems (Berg et al, 2007).

The A Healthier Future For All Australians Interim Report cited examples of health
related inequalities for people with intellectual disabilities including:
There is a huge burden of undiagnosed illness. Only 29 per cent of
health conditions are diagnosed and treated appropriately in this
population. Some 42 per cent of health conditions go undiagnosed.
And, even when health conditions are diagnosed, half of those
patients still have their conditions inadequately managed.

Psychiatric disorders are among the conditions that are frequently

not well diagnosed or managed in people with an intellectual
disability.

Dental disease is up to seven times more common than in the general

population. (National Health and Hospitals Reform Commission,
2009, p. 55)

These studies indicate that people with intellectual disabilities have an increased
risk of experiencing health problems in comparison to other members of their local
community.

In order to successfully address these health issues and inequities, a partnership

between the individual, his/her carer and any medical or allied health staff is very
desirable (Therapeutic Guidelines Limited, 2005). The general practitioner in rural
communities is usually the main ‘expert’ that provides medical support and advice
to people with intellectual disabilities and they have to deal with every medical
issue that arises across all sectors of the community (NSW Rural Doctors Network,
2008). It is recommended that people with an intellectual disability have regular
scheduled visits with a consistent general practitioner so that a comprehensive
health record can be established (Therapeutic Guidelines Limited, 2005). It is noted
that the process of an annual clinical review by a medical practitioner can assist in

74
the early identification of both new and existing genetic, health or ageing related
issues (Felce et al, 2008) and it allows families and carers to more successfully
manage these problems.

In conjunction with the treating general practitioner, many supported

accommodation services are starting to use a registered nurse to assess and
monitor the genetic conditions, overall health and development of any aged-related
problems (Kevin Mead, pers. comm., 7 August 2007). The conditions of particular
concern in the older cohort of people with intellectual disabilities include:
cardiorespiratory disorders, cerebrovascular disorders, hypertension,
hyperlipidaemia, diabetes, vision and hearing impairments,
osteoporosis, arthritis, impaired mobility, falls and fractures,
gastrointestinal conditions such as gastro-oesophageal reflux disease
and chronic constipation, incontinence, urinary tract infections,
cancer, hypothyroidism, Parkinson’s disease, depression, dementia.
(Therapeutic Guidelines Limited, 2005, p. 81)

The Australian Association of Developmental Disability Medicine and the National

and NSW Councils for Intellectual Disability made a submission to the 2008
National Health and Hospitals Reform Commission. This submission identified a
number of factors that were considered to contribute to the discrepancy in health
outcomes between the mainstream population and the sub-group of people with
intellectual disabilities. These factors included:
‘Diagnostic overlay’ – health professionals may assume that the
symptoms are part of the intellectual disability, not a separate
health condition that requires treatment.

Communication challenges – there will often be a need to spend

much more time with people with an intellectual disability and
many health professionals may not have sufficient training in
how best to communicate with such patients.

Workforce challenges – few health professionals will have

specialised training or exposure to people with intellectual
disabilities, recognising that there is a wide array of disabilities,
often accompanied by other health problems.

There is a lack of targeting of people with intellectual

disabilities in health promotion and prevention strategies.

75
 Other challenges include the high cost of providing
comprehensive and holistic care for some people with an
intellectual disability, the lack of support for families and
carers, and the lack of societal value attached to people with
intellectual disabilities. (National Health and Hospitals Reform
Commission, 2009, p. 55)

An Australian study by Iacono et al (2003) reported that medical practitioners were

concerned about the appropriate assessment and health care management for
people with disabilities. The Ascent Group, a disability support organisation based
in rural NSW, successfully applied for funding through the Reframing the Future
Community of Practice in 2002. The purpose of this project was to establish a
regional assessment group with the goal of developing a health care checklist for
general practitioners to use with people with intellectual disabilities. The grant
enabled the New England region to bring together staff members from the
Department of Health, the Department of Ageing, Disability and Home Care
(DADHC), allied health practitioners, general practitioners through the New
England Division of General Practice, clients and direct care staff (Kevin Mead,
pers. comm, 11 December, 2007). This project culminated in the development of
the New England Division of General Practice’s Intellectual Developmental
Disability Health Check List. The purpose of this checklist was to
provide a structured clinical framework for GPs to comprehensively
assess the physical, psychological and social function of patients with
an intellectual disability and to identify any medical intervention and
preventative health care required. (New England Division of General
Practice, 2009b, p. 1)

The checklist received very positive feedback from both internal and external
reviewers, including the NSW Community Services Commissioner Robert
Fitzgerald, who recommended its implementation across the state (Armidale
Express, 2002). The checklist is now widely used by both service providers and
medical practitioners across the northern region of NSW (New England Division of
General Practice, 2009a, 2009c); however, Fitzgerald’s recommendation does not
appear to have been followed through in other regions of the state.

76
The New England Division of General Practice’s Intellectual Developmental
Disability Health CheckList was specifically developed in accordance with the
Medicare Benefits system. In recent years, the Australian Government has made
available a number of additional specialised items on the Medicare Benefits
Schedule to assist general practitioners to appropriately manage the health care
needs of people with chronic medical conditions, such as an intellectual disability.
The goal of these Medicare items is to assist the treating general practitioner to plan
complex cases and, through this planning process, facilitate the individual with the
intellectual disability to access additional allied health services including
audiologists, diabetic consultants, chiropodists, podiatrists, chiropractors, exercise
physiologists, psychologists and mental health workers, osteopaths,
physiotherapists, dieticians, occupational therapists and speech pathologists
(Department of Health and Ageing, 2009c).

These Chronic Disease Management (CDM) Medicare items are designed to

combine the planning of the general practitioner with the services of the allied
health professionals. It is recommended that every person with an intellectual
disability should visit their treating doctor at least annually (Therapeutic
Guidelines Limited, 2005) for a GP Management Plan (often identified as Medicare
Item 721). During this visit the general practitioner assesses the medical status of
the individual with an intellectual disability and develops a management plan that
identifies appropriate treatments options, ongoing services and what referrals to
other allied health professionals are required. This plan can also be reviewed after a
period of six months through Medicare Item 725 - Review of a GP Management Plan
(Department of Health and Ageing, 2009c).

A second Medicare CDM item of relevance to people with intellectual disabilities is

the Coordination of Team Care Arrangements (Medicare Item 723). This CDM item
provides the general practitioner with a rebate specifically to coordinate and
oversee medical care for a person with very complex needs that requires consistent
and ongoing care from at least three different allied health care providers. This
item was designed to be of particular use for people with an intellectual disability

77
who may be either residing in the community or with their parents and who do not
have regular assistance from a disability support agency (Department of Health
and Ageing, 2009c). The CDM Item General Practitioner Contribution to a Resident's
Care Plan is of growing importance to ageing people with an intellectual disability.
This Medicare Item 731 allows a general practitioner to contribute to a
multidisciplinary care plan that is developed by another health or care provider for
a resident of an aged care facility. This process involves the general practitioner
collaborating and assisting the residential aged care provider and other associated
health professionals in the development of a health care plan for a person with
complex needs (Department of Health and Ageing, 2009c).

As the individual gets older, the issues associated with age-related disability, when
added to the problems with the pre-existing intellectual disability, potentially
result in a very difficult medical case (World Health Organization, 2000). The above
mentioned specialist Medicare CDM items facilitate the capacity of doctors to
address these complex scenarios. Until recent years, standard health screening
options such as Papanicolaou (pap) smears or mammographies were not regularly
performed on people with intellectual disabilities (Wilkinson, Culpepper &
Cerrato, 2007). Such testing is still not necessarily commonplace in this group
(Haveman et al, 2009) and this problem is still significant in later years as
preventative health screening of this type is recommended to occur on a scheduled
basis until the age of at least seventy-five (Therapeutic Guidelines Limited, 2005). A
change in the individual’s ability to provide self-care, regardless of the person’s
overall proficiency in this area, may be an early indicator of age-related decline in
competence. As such, it is recommended that an assessment of functional skills
should take place on a regular basis, with any changes communicated to the doctor
immediately (World Health Organization, 2000). It is vital for the treating general
practitioner to seek supporting clinical information from a variety of relevant
sources, such as family members, friends, staff and advocates and for the doctor’s
reports to then be clearly explained to carers (Kerr et al, 2003).

78
However, it is worth recognising that carers will not always provide an accurate or
objective assessment. Staff will often work with the same group of individuals for
long periods of time. A person within a group home often lives in this type of
supported environment for many decades (e.g. Edmundson et al, 2005). Naturally,
staff that support individuals for many years will become very familiar with, and
can establish a very strong sense of attachment to, the clients living within the
group home. The development of this relationship can present a series of problems
as a resident starts to develop age-related health problems. Staff will often
mistakenly believe that the emergence of psychological issues such as anxiety,
depression and challenging behaviours are simply an ongoing factor associated
with the individual’s disability, rather than as an age-related problem or as a
reaction to bereavement (Hollins & Esterhuyzen, 1997).

There appears to be a commonly held belief that all people with intellectual
disabilities will age more quickly than the mainstream community. The origin of
this viewpoint can probably be traced to the issues facing people with Down
Syndrome, who may experience a number of early onset age-related problems
(Evenhuis et al, 2001). Unfortunately, the needs of this sub-group of individuals
with Down Syndrome have often simply been extrapolated to incorporate all
people with intellectual disabilities. In order to take into account the issues facing
people with Down Syndrome, some early researchers suggested that the age of
forty should be adopted as the definition of ‘ageing’ for people with intellectual
disabilities (Grant, 2001). While this proposal may have some merit in relation to
the people with Down Syndrome, it is simply not appropriate to apply it
universally. Many people with mild intellectual disabilities will not begin to
experience ageing issues as prematurely as those with Down Syndrome (Haveman
et al, 2009) and using the age of forty to define ageing for all the cohort is
inaccurate. This phenomenon appears to reflect the problems associated with
generically determining the ageing of a group of people, rather than considering
the affect ageing has upon a certain individual (see section 2.2.2 What is Ageing?).

79
Nonetheless, while the belief that all people with intellectual disabilities will
definitely age much faster and at a significantly earlier age than the general
community is a fallacy, it is true that some syndromes do experience specific aged-
related health problems. For example, a person with Down Syndrome has a
statistically higher chance of experiencing early onset dementia than the
mainstream population (Dalton et al, 1999). Rates of dementia and Alzheimer’s
disease are also higher in people with an intellectual disability than the general
community (Strydom et al, 2007). The early and accurate detection of dementia is
particularly important for people with intellectual disabilities as it can have a major
impact upon how services are delivered. Diagnosing dementia or Alzheimer’s
disease in people with an intellectual disability can be very problematic (Burt et al,
2005), with some standard diagnostic tools, such as the Mini-Mental State
Examination, not validated for use in this sub-group (Therapeutic Guidelines
Limited, 2005).

Functional decline can be inaccurately attributed to the process of ageing rather

than the impact of other factors, including psychiatric and psychological disorders,
sensory impairments, medical conditions and even medications (World Health
Organization, 2000). If dementia is suspected, it is important that the family or
support staff work in conjunction with the general practitioner or neurologist to
develop both a baseline functioning level and a case history that can be used to
determine deterioration in skills over time (Therapeutic Guidelines Limited, 2005).
It is often difficult for a doctor to clearly differentiate between what is a challenging
behaviour that may be stemming from an existing intellectual disability and what
is a new action that may be a response to an emerging ageing issue, such as
dementia or depression (Burt et al, 2005).

An Australian study by Iacono and Sutherland (2006) noted a potential concern

relating to doctors who continued to use guidelines derived for the mainstream
population without taking into account any disability related conditions. The
introduction of specific Medicare CDM items is an encouraging development in the
goal of assisting doctors to more appropriately assess and monitor any aged-

80
related declines that may be evident in a person with an intellectual disability
(Durvasula & Beange, 2001). These processes are an important component of the
wider medical system designed to support people with disabilities to age
successfully and live independently for as long as possible.

The need for specific medical assessment protocols is demonstrated by the fact that
people with an intellectual disability are more likely to have the dual diagnosis of
an additional mental health issue than the mainstream community (Cooper et al,
2007a). Determining the psychiatric health of people with an intellectual disability
can present difficulties for families, staff members and general practitioners. Staff
often do not have the necessary knowledge or information to accurately identify or
recognise mental health issues (Costello, Bouras & Davis, 2007), or how to refer
individuals on for further assessment (Piachaud, 1999). Likewise, psychiatrists in
Australia believe they are generally “untrained and inexperienced” (Jess et al, 2007,
p. 191) in supporting people with both an intellectual disability and a mental health
issue.

There are a number of specific psychiatric conditions that need to be considered for
people with an intellectual disability as they age. In particular, these conditions
include “delirium, dementia, depression and chronic psychiatric disorders”
(Therapeutic Guidelines Limited, 2005, p. 87). The symptoms of many psychiatric
conditions include impaired attention, a decrease in memory or language, or
changes in cognition, motor skills and emotional state (Therapeutic Guidelines
Limited, 2005). Many of these symptoms can mirror behavioural problems and it
can be difficult for family members or support staff to determine whether there is a
new psychiatric condition associated with ageing or if it is simply the continuation
of an existing behaviour. It is therefore important that any change in functional
skills or behaviour in an older person with an intellectual disability is evaluated
carefully (World Health Organization, 2000). The symptoms of some psychiatric
conditions can hide the development of other serious diseases and treatment can be
unnecessarily delayed until a proper diagnosis takes place (Therapeutic Guidelines
Limited, 2005).

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 2.4.1.2 Ageing in Place
In 1997 the Australian Government reconceptualised its approach to the provision
of aged care services. This change included the adoption of the ‘ageing in place’
support system to complement the existing residential and community based
models (Australian Institute of Health and Welfare, 1999b). Ageing in place
introduced a philosophy of providing personal assistance to individuals to
facilitate them to remain in their own home and own community, and therefore
avoid premature movement into a nursing home-style setting (Forbat, 2006). While
some people in the general community make a ‘sea change’ or ‘tree change’ and
move away from their traditional residence upon retirement (Burnley & Murphy,
2004), many older people choose to remain in their familiar home and local
community as long as possible (Phillipson, 2007).

While ageing in place is in principle a mainstream concept, it would appear to have

equal application to people with intellectual disabilities. However, a precise
definition of what ageing in place means for an individual in supported
accommodation has not been established. There are no clear government
guidelines that outline the goals of ageing in place for people with intellectual
disabilities. Within Australia, different service models have quite varied
interpretations of exactly what ageing in place entails in reality.
Ageing in place can variously be considered as:
continuing to reside within the same group home or supported
accommodation option, but with additional assistance;
remaining within the same group home, until such stage as the disability
organisation is unable to provide the necessary level of expert care;
staying within the same house, regardless of the additional expense, until
the death of the individual; or
moving to another group home setting, but with the same disability service
provider and normally within the same approximate locality (Fyffe, Bigby &
McCubbery, 2006).

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Without a clear direction with respect to ageing in place for people with intellectual
disabilities, undesirable consequences such as premature admissions to residential
aged care facilities and a return to congregate care models remain possible.

As a means of trying to assist people to age successfully (as discussed in section 2.4
Successful Ageing), community based aged care services have been implemented
across New South Wales (NSW) over the past decade. One of the primary goals of
this model is to assist people to remain in their familiar environment and to delay
their entry into a residential aged care facility. The stated objects of the
Commonwealth Aged Care Act of 1997 in Section 2.1 include the following clauses:
(d) to ensure that aged care services are targeted towards the people
with the greatest needs for those services;
(e) to facilitate access to aged care services by those who need them,
regardless of race, culture, language, gender, economic circumstance
or geographic location;
(j) to promote ageing in place through the linking of care and support
services to the places where older people prefer to live.
(Commonwealth of Australia, 1997, pp. 3-4)

Home and Community Care (HACC) services are designed to provide low levels of
support in the home, whilst the Community Aged Care Packages (CACP) and
Extended Aged Care Packages (EACH) provide greater amounts of individual
assistance to facilitate older people to remain living in their local community
(Department of Ageing, Disability and Home Care, 2009c; Department of Health
and Ageing, 2009a).

However, it is extremely difficult for a person who currently receives funded

disability support to then gain additional assistance as they age. The Australian
Senate has identified the problem of funding people ageing with an intellectual
disability, recommending
that funding arrangements and eligibility requirements should be made
to allow supplemental aged care services to be made available to people
with disabilities who are ageing, allowing them to age in place.
Administrative funding arrangements should not impede access to aged
care services for people with a disability who are ageing. (Senate
Community Affairs Reference Committee, 2007, p. xii)

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In spite of this key recommendation, the same barriers to obtaining appropriate
support were still present in 2010. The 1997 Aged Care Act specifies a number of
groups as ‘people with special needs’. These categories include people in rural and
remote locations, people from a non-English speaking background and people
from Aboriginal or Torres Strait Islander communities, but do not recognise the
special needs of people with disabilities (Commonwealth of Australia, 1997). A
person with an intellectual disability who receives minimal independent living
support from a disability support agency is not considered eligible to access
relevant HACC services if they require additional support associated specifically
with their ageing (National Disability Services, 2007c). Studies in Australia have
shown that even when an individual with an intellectual disability is diagnosed
with serious health issues such as dementia, there is no increased funding for the
accommodation providers to deal with these changed support needs (Fyffe, Bigby
& McCubbery, 2006; Janicki et al, 2005).

There is no easy process for disability accommodation support money to be

increased through the NSW funding body, the Department of Ageing, Disability
and Home Care (DADHC). As the avenue of accessing generic aged care support is
also denied, people with disabilities who receive accommodation support are
therefore often left in a ‘limbo’ situation. It was noted that “effectively these people
are denied the right to ‘age in place’, a right that the broader community expects”
(National Disability Services, 2007c, p. 4). Unfortunately, this situation has often
only been resolved by the disability support organisation relinquishing its specific
support programs and the individual with the disability moving into a specialist
aged care facility (Kevin Mead, pers. comm., 28 July 2009). Surveys across Australia
underline this problem, indicating that people with intellectual disabilities become
residents within aged care facilities at a much younger age than the general
population (Webber et al, 2006). It was also recognised that, as individuals entered
a residential aged care facility, their involvement with, and support from, specialist
disability providers largely ceased (Bigby, 1997).

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These access issues are not limited to disability service providers. It has been
identified that there is substantial unmet need for services for people with
intellectual disabilities with ageing carers in rural areas of Australia (Eley et al,
2009). A large proportion of people with intellectual disabilities will be supported
by, and continue to live with, their parents for the majority of their life (Beange &
Taplin, 1996). However, there is an increasing proportion of this cohort who
survive their parents and may have no living family members (Bigby, 2008b). It has
been identified that the service provider often becomes the de facto advocate for
the rights for many older people with intellectual disabilities who have no
remaining close relatives who can independently fulfil that role (Bigby & Johnson,
1995).

A number of the key concerns of older parents of people with intellectual disability
were identified by Weeks et al (2009) and these included issues such as a lack of
funding, worries about the lack of service provider understanding of their needs,
and the appropriateness of the proposed support model for their child. One of the
most significant problems facing people with intellectual disabilities as they age is
how they cope with the loss of their parents or primary caregivers. This issue is of
concern to both these individuals and their parents who have provided care for
them for many years. This worry was noted by Bigby (2000, p. ix): “‘What will
happen when I die’ has become a major question and source of anxiety for parents
of people with an intellectual disability”.

The transition from the familiar family environment to a residential setting of some
form is often seen as the only option available following the death of a primary
carer or when the personal support needs of the individual begin to exceed the
capacity of the ageing carers (Chenoweth, Newman & Burke, 2001; McCallion &
Janicki, 1997). An Australian study of people with intellectual disabilities in
residential aged care facilities identified this phenomenon, commenting that

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 the largest proportion of residents were living with family prior to
their move into residential aged care, and were generally admitted
when their carer became ill or died, when their own health
deteriorated or when family members could no longer provide the
level of care or support they required. (Webber et al, 2006, p. x)

Griffin (1997) described a situation in which an Australian woman with a mild

intellectual disability and Down Syndrome moved into a residential aged care
facility at age twenty-seven. This individual did not have any signs of dementia,
Alzheimer’s disease, or indeed any other ageing related issues. The reason she had
moved was because her mother, who was her carer, had to be admitted to a
nursing home and the young woman had simply moved in at the same time. She
was still living in the aged care facility fourteen years later, well after her mother
had passed away.

Moving a person with an intellectual disability into a residential aged care facility
is not a decision to be made quickly, regardless of his/her age (Bigby, 2000). Some
reported problems with people with intellectual disabilities in residential aged care
facilities include social isolation, boredom, an inability to participate in group
activities and a shortage of resources to address their specific needs and
requirements (Bigby et al, 2008). These issues are not surprising, when the
potentially large disparity in age is considered. In one study, 30 percent of people
with an intellectual disability in nursing homes were aged between thirty and sixty
(Griffin, 1997), whereas the average age of mainstream residents was eighty-three
years (Aged Care Association Australia, 2004). Surprisingly, half of this younger
group were also considered to only have minor to moderate support needs (Griffin,
1997) and not the higher care needs normally associated with early entry into
nursing care facilities (McConkey, 2005). It has been reported by Bigby et al (2008)
that people with intellectual disabilities generally entered residential aged facilities
at a younger age and then remained within this form of care for longer periods of
time than the mainstream population.

Supporting the individual to remain in his/her home rather than move

prematurely into a residential aged care facility is the central theme to the

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philosophy of ageing in place. Bigby (1997) detailed a number of cases where an
individual remained in the community following the death of her/his parents and
subsequently experienced newfound freedom and independence to pursue a
variety of activities with appropriate support. However, ageing in place for people
with intellectual disabilities is not readily supported by the government funding
structures with the models of care not fitting the needs of this sub-group. Very few
of the people surveyed by Bigby (1997) were supported to age in place and instead
ended up in some form of residential facility. While the Australian Government
has made available specific respite funding to assist older carers to look after their
adult children with disabilities (Department of Families, Housing, Community
Services and Indigenous Affairs, 2009g), it does not address the problem of what
occurs following the death or permanent incapacitation of the carer.

While both aged care and disability service providers appear willing to address the
problem, the additional resources required and lack of targeted government
financial support prevent relevant ageing programs from occurring as a matter of
course (Bigby & Balandin, 2005). It has been proposed that some of these problems
could be mitigated if intellectual disability was categorised as a specific category
for funding within the existing aged care system (Webber et al, 2006) but this
solution has not been enacted. It was also noted that, while concerns about the care
needs of adults with an intellectual disability and dementia have been identified,
there remains a lack of relevant studies into the impact this issue has on carers and
support staff. Gaps in current research include areas such as behavioural
interventions, staff training and models of care (Courtenay, Jokinen & Strydom,
2010).

2.4.1.3 Retirement for People with Intellectual Disabilities

Retirement from employment is an important milestone for any worker. A precise
definition of retirement is difficult as it varies with context. However, in general
terms, retirement is taken to refer to the ending of an individual’s paid working
time and the commencement of the next stage of the person’s life with more free
time (Bowlby, 2007). While mainstream community members are able to plan and

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take advantage of their increased freedom for options such as overseas trips, social
activities and more time with their family, the issues for people with an intellectual
disability are more complex. Often, people with intellectual disabilities identify
strongly with their employment and are loath to leave it voluntarily (Ashman,
Suttie & Bramley, 1995). As a consequence, some organisations ultimately enforce
retirement against the wishes of the individual (Brown, 1993). The relevance of the
concept of retirement for people with intellectual disabilities is questioned (Bigby &
Balandin, 2005), as is the issue of whether a person should ‘retire’ from a lifelong
participation in alternative employment options such as a specialist disability day
program (Bigby et al, 2004).

Without the day-time routine of going to work, an individual with an intellectual

disability can often find his/herself isolated from friends and social opportunities
(Bigby, 1997). For many people with an intellectual disability, they do not have a
strong social network outside the disability service system (Bigby, 1992, 2008b). For
someone with autism, the change in routine following retirement can be extremely
problematic, particularly if s/he has been attending an employment option
continuously for more than thirty years (Kerrie Sauer, pers. comm., 11 April 2007).
Research has also suggested that the individual’s financial situation, the level of
support required and even his/her personal sense of purpose in life can be affected
by retirement (Budge, 1998). If the individual does not have an alternative program
in which to participate following retirement, further pressures are placed onto
carers who have to provide additional support during the hours the individual
would have been otherwise occupied at work.

While everyone should have the same right to retire from employment, people
with intellectual disabilities need a structured program of relevant and meaningful
activities to prevent social isolation (Bigby & Balandin, 2005), while also taking the
following into consideration:

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 Rather than focusing on retirement, the focus must shift to how
existing or alternative new services can provide optimal living
environments, skill maintenance and development, stimulating leisure,
recreational and social opportunities appropriate to each individual’s
rate of ageing. (Bigby, 1997, p. 106)

At this point in time, no such widespread specialist programs are in place for
people with intellectual disabilities (National Disability Services, 2007b). A number
of individual day programs were identified by Bigby (2005a) as managing to
overcome some of the funding imposed barriers associated with ageing and
intellectual disability. However, these services were largely conducted as
independent joint initiatives between accommodation and day program providers,
rather than as a formal part of a larger government structured approach to the
problem. If successful ageing is to occur (as discussed in section 2.4 Successful
Ageing), the issue of appropriate day-time programs and options for this cohort of
people needs to be resolved through the implementation of funding models that
support the needs of the individual. National Disability Services (NDS), which is
the peak body for disability support organisations in Australia, made a series of
recommendations in 2007 to facilitate and support the retirement of people with
intellectual disabilities from the workforce. These recommendations included the
development of a specific transition to retirement program and new assessment
processes (National Disability Services, 2007b); however, none of these
recommendations have as yet been enacted by either the Commonwealth or State
Government.

2.4.1.4 People with an Intellectual Disability and Grief

As the life expectancy of people with intellectual disabilities rises, a natural
consequence is the greater likelihood of these individuals experiencing the death of
a significant other, such as a parent (Blackman, 2003a). If individuals with an
intellectual disability are to age successfully, assistance needs to be provided to
ensure that this group of people have the support to cope with this situation.
Historically, there has been a perception that many people with intellectual
disabilities may not have had the necessary understanding of social relationships to
feel grief or the capacity to comprehend loss associated with the death of a family

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member or friend (Speece & Brent, 1984). Much of this argument seems to have
been based upon the perception that people with intellectual disabilities were
unable to establish the close social and personal relationships with other people
that underpin later feelings of grief following a death (McDanial, 1989).

Oswin (1991) considered this viewpoint to be overly simplistic and that it did not
take into account personal differences and varying levels of individual capacity.
While a person’s disability may affect her/his intellectual development, it does not
necessarily follow that emotional understanding is similarly impaired. As noted by
Dodd, Dowling and Hollins (2005, p. 541) in their review of grief research
literature, “people with IDs are not a homogenous group: there are wide
differences in experience, environment, personality and ability”. Myers (1980)
proposed that people with intellectual disabilities had far more similarities in their
grief reactions to the mainstream population than identifiable differences.
However, the level of intellectual disability will have an effect upon the ability of
the individual to understand concepts such as death and dying (McLoughlin, 1986)
and the grief process may be delayed in some (Kitching, 1987). It was felt that they
may fail to understand the full impact of the loss immediately but the reaction to
the loss would then come in the future when they realise the person is not coming
back. Individuals with lower levels of intellectual impairment are considered to be
more capable than previously thought of understanding the varying components
of the concept of death and, therefore more able to prepare for an impending
bereavement (McEvoy, Reid & Guerin, 2002).

The death of a close family member, such as a parent, has been linked to a variety
of symptoms of grief in people with intellectual disabilities. These reactions include
anger and anxiety as well as ongoing problems associated with loneliness and
sadness (Harper & Wadsworth, 1993). It was found that people with an intellectual
disability experienced significantly greater levels of irritability and inappropriate
behaviours following the death of a person near to them (Hollins & Esterhuyzen,
1997). A questionnaire completed by carers reported that people with an
intellectual disability who had lost a parent within the previous two years

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displayed various complicated grief reactions, including difficulty in carrying out
normal activities, personal upset when thinking about the deceased, feeling guilty
if they enjoy themselves, insecurity, and losing trust in other people (Dodd et al,
2008a).

The people in the best position to assist individuals with intellectual disabilities in
their grieving are often the direct care support staff within residential settings
(McHale & Carey, 2002). However, this situation can result in a very difficult
working environment for the disability support workers. The direct care staff are
often placed in the crucial role of trying to explain the concepts of death and dying
to a person with an intellectual disability as well as then providing immediate
support and comfort (Read & Elliott, 2007). However, these employees often have
no specific training, skills or experience in assessing or identifying psychological
distress (Blackman, 2003a). A lack of knowledge and skills in the provision of
psychological support for individuals with intellectual disabilities in relation to the
issue of death and dying was found in support staff by Ng and Li (2003). The actual
process of providing support to a grieving person can be both emotionally and
psychologically difficult for direct care workers (Murray, McKenzie & Quigley,
2000). It was also reported that staff lacked confidence in knowing the proper
responses and protocols following a bereavement (McEvoy et al, 2010).

In the same way that children are often sheltered from the reality of death, many
people with intellectual disabilities are not informed when close family members
are dying and are sometimes denied the opportunity to grieve normally (Blackman,
2003a). Actually participating in the mourning process, attending the funeral and
wake, and being part of a larger emotional support network may all contribute to
the individual grieving appropriately (Meeusen-van de Kerkhof et al, 2006;
Worden, 1983). By failing to include people with intellectual disabilities in these
mainstream processes, the grieving process may be hindered and result in an
increase in challenging behaviours and other similar problems (Bicknell, 1983;
Blackman, 2003b; Dodd, Dowling & Hollins, 2005). However, it was also noted by
Dodd et al (2008a) that a strong involvement in post-bereavement rituals was

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actually linked to the development of complicated grief symptoms and separation
distress. Both family and staff members need to consider the needs and capabilities
of each individual carefully in order to minimise the impact of bereavement while
still facilitating the person to grieve appropriately.

2.5 Disability Service Provision in Rural New South Wales

The direct provision of services for people with intellectual disabilities are not
simply the domain of state and commonwealth government departments. The non-
government sector provides a significant proportion of the disability support
programs available in Australia. As of 2008, there were in excess of 5 100 people
with disabilities who received funding from the New South Wales (NSW)
Government for either institutional or group home accommodation care (NSW
Ombudsman, 2008). These five thousand placements were either provided directly
by the Department of Ageing, Disability and Home Care (DADHC), or through
Non-Government Organisations (NGOs) who received funding from the
Government under the 1993 NSW Disability Services Act to provide this support.

Almost all day programs in NSW are operated by NGOs, as are all Commonwealth
resourced employment programs funded either by the Department of Education,
Employment and Workplace Relations (DEEWR) or the Department of Families,
Housing, Community Services and Indigenous Affairs (FaHCSIA). NGOs, such as
Aftercare in Sydney, have been providing support to disadvantaged members of
their local communities since the early 1900s (Aftercare, 2009). Other charitable and
Not-For-Profit (NFP) organisations, such as The Spastic Centre, were similarly
established to supplement the services provided by government departments (The
Spastic Centre, 2009). Currently in NSW, DADHC funds in excess of nine hundred
different NGOs across both metropolitan and rural areas (Department of Ageing,
Disability and Home Care, 2008a).

In general, people living in rural and remote areas of NSW are disadvantaged in
many regards with respect to their metropolitan counterparts. Rural residents have
lower socio-economic status, higher levels of unemployment and poorer access to

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health care services (Australian Institute of Health and Welfare, 2003; Francis,
2005). There have been obvious differences reported between individuals with an
intellectual disability ageing in metropolitan versus rural localities (Ashman,
Hulme & Suttie, 1990). In rural areas of NSW during the first half of the 20th
Century services for people with intellectual disabilities were very limited. Even in
larger regional cities, such as Armidale, support was limited to that provided by
either the local doctors or the hospital’s social worker (Edmundson et al, 2005).
There were either no, or very limited, specialist government services and the
options for both parents and people with intellectual disabilities were extremely
restricted. It was during the 1950s and 60s that a considerable number of rurally
based NGO disability organisations began to be established in response to this lack
of access to services provided by government.

A common pattern in the development of these rural organisations was that the
driving force in their establishment was through community action by local parents
and concerned citizens (e.g. Challenge Disability Services, 2009; Coffs Harbour
Challenge, 2009; Edmundson et al, 2005; Mai-Wel, 2009; MultiTask, 2008). During
the 1950s, the State Government indicated that it would provide dollar for dollar
funding for the development of specialist disability services such as schools and
hostel accommodation. This offer led to community based fundraising activities
such as lamington drives, street stalls, fetes and even door knocking being
conducted to raise the necessary capital to establish the programs that people with
disabilities needed (Edmundson et al, 2005). This era was identified as the time
when parents began to choose not to send their children away to institutional care
but instead to establish local services that would support them within their home
community (Gatter, 1996).

Over the past fifty years, further disability organisations have been established
across rural NSW. Some towns are still serviced primarily by one or two long-
standing providers who offer a range of programs, whereas other towns have a
number of smaller services that each offer complementary specialist programs.
These services vary from twenty-four hour high support accommodation models

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through to early intervention, day programs, respite, therapy and behavioural
support services (Department of Ageing, Disability and Home Care, 2008f). While
DADHC does provide some group home accommodation in rural areas, they are
often secondary and smaller in capacity than the equivalent services provided by
the NGOs in the same communities (Edmundson et al, 2005). In 2008/09, rural and
regional NSW NGOs received a total of $821 million in support programs for
ageing and disability services (Department of Ageing, Disability and Home Care,
2008e).

Nonetheless, there remains substantial unmet need with respect to residential

support services for people with intellectual disabilities in general (Australian
Institute of Health and Welfare, 2006, 2008a; Stancliffe, Lakin & Prouty, 2005) and
specifically in rural areas (Eley et al, 2009). The issues surrounding unmet need are
further complicated by government mandates that now require disability
organisations to ensure their existing services meet both legislative obligations,
such as Occupational Health and Safety, and philosophical goals, such as quality of
life and person centred planning outcomes. These additional government
requirements have had to be implemented largely without the provision of any
additional funding. The new concepts of service provision have largely stemmed
from the principles of normalization and social constructionism (see section 1.3
Theoretical Framework for the Current Study) and, while these changes are both
welcome and necessary, the lack of financial assistance for their implementation
has further increased the pressure upon service delivery (Kevin Mead, pers.
comm., 28 July, 2009).

2.5.1 Quality of Life

One of the key concepts that has been strongly promoted in disability service
provision is Quality of Life (QoL) (e.g. Department of Ageing, Disability and Home
Care, 2007b). However, it would appear that many direct care and support workers
are not precisely sure what the term means and, in particular, how it applies to
individuals with an intellectual disability who are ageing (Bigby, 2004). Part of the
reason for this confusion relates to the fact that ‘quality of life’ is premised upon a

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generic concept that is not specific to intellectual disability and the term has been
interpreted in disparate ways as a consequence of the difficulty in clearly defining
its meaning (Felce & Perry, 1995).

Attempts to define QoL in the mainstream population can be traced back to work
conducted by Thorndike, who developed an assessment system with over three
hundred items and thirty-seven traits designed to measure the ‘goodness of life’
that ‘good people’ would experience while living in different cities in the United
States (Thorndike, 1939). Since this initial work, researchers have continued to
refine and revise the methodologies and systems for determining QoL (Flanagan,
1978; Schalock et al, 2002; Sirgy, 2002). There have been in excess of two hundred
different QoL models developed to assess and measure aspects of an individual’s
life (Brown, 1998; Cummins, 1997), with one analysis reporting forty-four separate
definitions of QoL and 1243 difference measures (Hughes et al, 1995). There are
numerous different approaches to assessing and measuring QoL and the various
models each incorporate specific dimensions such as psychological, social,
cognitive, emotional, judgemental, affective, ecological, aesthetic, psychophysical
and phenomenological factors. However, almost all of these different dimensions
can be considered as either a subjective or objective indicator (McVilly &
Rawlinson, 1998).

Objective indicators are considered to be social measures that relate to primarily

external issues or environmental conditions. A number of generic categories of
objective indicators have been developed and include:
Income, work status and overall wealth,
Environmental issues, with a particular focus upon the domestic home,
Physical and mental health,
Education and qualifications,
Social dysfunctions such as alcoholism, illicit drug use and criminal
activities, and
Social isolation and community participation (Schneider, 1975).

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The use of objective measures in determining QoL has a number of advantages.
Firstly, they are largely quantifiable, making it relatively easy to establish a score
on a measure without relying upon individual perceptions or personal biases.
Objective indicators can incorporate a wide variety of people and can be
generalised across sub-groups or entire populations, facilitating the ability to make
comparisons between sectors or across time. However, these same strengths can
also be potential weaknesses. Objective indicators are largely descriptive of the
QoL of populations with less of an emphasis upon the individual experience.

It has been argued that there is actually no relationship between objective

indicators and a specific individual’s QoL (Schneider, 1975) and, as such, objective
indicators are insufficient in themselves to provide accurate measurement.
Agreement upon how to measure objective indicators can also be difficult to
achieve (Diener & Suh, 1997). An example of this problem can be seen with an
example of rating the access of a person with an intellectual disability to specialist
healthcare facilities. Is the access measurement based upon geographic distance
from the service, the length of time it takes from the initial referral until the person
is actually seen by the specialist, the length of the waiting list to access the service
or a combination of all these factors?

In contrast to objective indicators, subjective measures attempt to assess the actual

individual’s QoL. This approach is achieved through interaction with the person
rather than through a reliance on population statistics. Subjective indicators are
seen to be predominantly psychological with a focus upon understanding how the
individual rates life satisfaction in accordance with her/his own personal criteria
(Costanza et al, 2008). There are two primary approaches to subjective measuring
of QoL. The first model involves a generic measure being established as a baseline
of psychological well-being with more specific indicators being examined in
relation to this global measure. This approach focuses upon how daily life
experiences affect the individual’s perceptions of happiness.

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An example of this model is seen with Bradburn’s (1969) 10-Item Affect Balance
Scale. This questionnaire is composed of two separate lists: five questions that
examine positive affect issues and five questions that examine negative affect
issues. Each of the ten questions requires the individual to respond with either a
‘Yes’ or ‘No’ with respect to events that had occurred in their life recently. An
example of a positive affect question in this type of model could state ‘During the
past few weeks, did you ever feel proud because someone complimented you on
something you had done?’ The positive and negative affect scales are not related to
each other; however, it was proposed the individual’s well-being and life
satisfaction could be estimated through examining the results of the positive and
negative affects scales (Bradburn, 1969).

The second model of subjective measurement involves the identification of specific

life areas with the individual’s QoL assessed and determined by comparison to
each of these domains. This approach is traditionally undertaken through direct
interview with the individual, with questions being asked that relate to varying
aspects of their daily life. The person is asked to rate the relative importance of a
variety of different life domains, normally using a five point Likert scale. These life
domains can include areas such as financial security, personal relationships,
employment, social life and health amongst many others. It is argued that the
person’s QoL can be estimated through examining the discrepancy between how
they currently perceive their life in contrast to what they would actually like to
experience in their life. The difference between the perceived and the desired life
acts as a measurement of the individual’s level of satisfaction and overall well-
being (Flanagan, 1978).

One of the main advantages of using either model of subjective measurement of

QoL is that they are good at identifying areas of difference whilst remaining
consistent in situations of no change. They also allow the researcher to examine
more specifically the issues important to the individual (Diener & Suh, 1997).
However, subjective measures can also be limited by their reliance upon personal
characteristics at the detriment of accurately identifying external or environmental

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issues. Subjective measures can also be criticised on the basis of perceived
methodological limitations associated with the researcher’s choice of which
variables to use within the questionnaire (Diener & Suh, 1997).

2.5.2 Quality of Life for People with an Intellectual Disability

The use of quality of life (QoL) measures has gained considerable currency in the
disability sector as a framework for evaluating the appropriateness of services.
There is, however, only a limited amount of research data regarding QoL’s
suitability and appropriateness to the field of intellectual disability (Brown,
Schalock & Brown, 2009). One of the central issues that QoL researchers need to
consider is whether there is inherently anything different between an individual
with or without an intellectual disability. Does the person’s disability mean that the
mainstream measures of QoL are not necessarily valid and, therefore, is there a
need for a new set of specialised assessment items? Generic QoL measures may not
accurately capture the life experiences of a person with an intellectual disability
but, conversely, one of the problems with using QoL measures purposefully
designed for people with intellectual disabilities is that they can be unduly
focussed upon negatives and fail to accurately allow the person to express his/her
actual level of happiness (Cummins, 1997).

The assessment and measurement of QoL has become an increasingly important

and crucial area of service provision for disability support organisations. It was
argued that QoL was the “pre-eminent issue of the 1990s” for intellectual disability
services (McVilly & Rawlinson, 1998, p. 200). Interest in assessing and measuring
the QoL of people with intellectual disabilities can be traced back to the work of
Nirje and the normalization principle (Nirje, 1969), as described in section 1.3
Theoretical Framework for the Current Study. Normalization originated in a desire to
better understand and therefore improve the life conditions of people with
intellectual disabilities (Nirje, 1992). Current New South Wales (NSW) Government
disability legislation has been partially derived from the work of Nirje and makes
specific reference to QoL for people with intellectual disabilities in the Principles
and Applications of Principles associated with the NSW Disability Services Standards

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(Department of Ageing, Disability and Home Care, 2008c). Disability support
organisations are assessed in accordance with these Standards and must prove to
government how the service works with people with disabilities to “support their
attaining a reasonable quality of life” (Department of Ageing, Disability and Home
Care, 2008c, p. 2).

There is little agreement on a precise definition of QoL for people with intellectual
disabilities or what factors are most appropriate to assess and measure it. The
research literature would appear to support the concept of QoL measurement
having to occur through a variety of different subjective and objective indicators;
however, these dimensions will vary across time and individuals (Chun Yu, Jupp &
Taylor, 1996; Felce & Perry, 1997). There is general acceptance that it is essential for
the QoL indicators to be both valid and reliable if they are used as a barometer for
assessing whether the quality of service provision received by an individual is
increasing or deteriorating (Conroy & Feinstein, 1990). Eight key components, or
life domains, have been described by Schalock and Verdugo-Alonso (2002) that
need to be considered when assessing an individual with an intellectual disability’s
QoL. These eight life domains are:
physical well-being,
emotional well-being,
interpersonal relations,
material well-being,
personal development,
self-determination,
social inclusion, and
rights.

It is argued that these eight life domains cover the key factors that determine an
individual with an intellectual disability’s QoL. However, it is also acknowledged
that there are inherent problems with applying QoL measures to people with
intellectual disabilities (McVilly & Rawlinson, 1998).

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One difficulty with establishing an individual’s QoL, particularly for a person with
an intellectual disability, is the potential communication barrier. If a person has a
severe intellectual disability or has very limited receptive or expressive
communication skills it can be hard to clearly establish the individual’s
understanding of the issue, let alone his/her personal views. This problem can be
partially addressed through family, friends and carers responding on behalf of the
person with the intellectual disability; however, it is impossible to confirm whether
these proxy answers accurately reflect the individual’s feelings (Cummins, 1997).

Another major difficulty associated with personal interviews and QoL assessments
for people with an intellectual disability is the known phenomenon of
‘acquiescence bias’, in which participants are increasingly likely to agree with a
question without necessarily either understanding or comprehending the meaning
of the question (Rapley & Antaki, 1996). The problem of acquiescence bias is an
important issue for researchers to consider as it is naturally desirable to have the
direct input, whenever possible and practical, of the individual with the intellectual
disability with regard to the services they receive. Respondent acquiescence can be
overcome, at least partially, through ensuring that the questionnaires utilised in the
QoL are grammatically simple (Finlay & Lyons, 2002), do not follow a simple
‘yes/no’ dichotomy, and provide the respondent with ample opportunity to
elaborate and express their feelings on the issue (Burnett, 1989).

The life expectancy of people with intellectual disabilities has undergone a

remarkable increase in recent decades (Fisher & Kettl, 2005). However, the mere
extension of life does not necessarily equate to a high quality of life (Brown, 1993).
One of the problems being experienced by the disability and aged care sectors is
that there is limited data and information regarding the expectations and desires of
people with an intellectual disability as they age. This lack of knowledge means
that there is a very limited understanding of how to accurately measure and assess
the QoL for individuals within this sub-group of the community. QoL has become
one of the major measures of service provision by disability organisations in the
past two decades (Kober & Eggleton, 2009). Regardless of which QoL tool is used,

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the assessment process must be considered in light of the desired outcomes and
what specific information is sought. While objective indicators are vital in
providing an over-arching methodology for determining service achievements, it is
important to ensure that adequate inclusion of appropriate subjective indicators
also occurs, as this mechanism facilitates the direct involvement of people with
disabilities in the assessment process.

It has been proposed that there needed to be a greater recognition of process

evaluation in comparison to outcome evaluation with respect to QoL assessments
of disability support organisations. In process evaluations, the focus is upon
examining the policies, practices and work procedures of the service and how these
translate into day to day programs. Process evaluations are very good at
determining the overall performance of a disability agency and generically how
well the organisation supports people with intellectual disabilities. Outcome
evaluations, however, are premised upon what the individual manages to achieve
with the support of the service. Outcome evaluations are client focussed and, as
such, are able to provide more accurate measures of a specific individual’s quality
of life than process evaluations (McVilly & Rawlinson, 1998). The majority of
government conducted audits upon disability services, such as the Disability
Employment Standards Quality Assurance (DESQA) and the Integrated Monitoring
Framework (IMF), have a strong focus upon process evaluation. The auditors
examine the systems and paperwork in great detail; however, the level of direct
interaction with clients and their families is often limited to a brief meeting of
around thirty minutes in duration (Kerrie Sauer, pers. comm., 30 September 2009).

The issue of process versus outcome evaluations is particularly important with

respect to supporting ageing people with an intellectual disability. At a time in
which the individual’s personal care needs are increasing but the funding is
remaining constant, the individual’s quality of life can become secondary to the
need to complete the requisite paperwork and documentation to satisfy external
auditors. Both auditors and service providers need to be cognisant of the fact that

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 the documentation associated with meeting standards and regulations,
the primary focus of process evaluation, often becomes a barrier to the
happiness of persons who live in those facilities that are overly
concerned with certification. (Borthwick-Duffy, 1990, p. 180)

Assessing and determining QoL for people with intellectual disabilities is an

ongoing process for most disability organisations. However, the lack of a clear
definition and the difficulties associated with the application of QoL measurements
to people with intellectual disabilities remain problematic within the sector. These
problems can be seen by the fact that there is currently no standardised
measurement tool for QoL developed for ageing people with an intellectual
disability.

2.5.3 Person Centred Planning

While one of the primary aims of any disability support service is to enhance, or at
least maintain, an individual’s Quality of Life (QoL), the methods of achieving
these goals are not clear or applied consistently across the sector and have changed
considerably over time (Beadle-Brown, 2006). Individualised planning has been the
process used in the past few decades to achieve specific outcomes for people with
intellectual disabilities. Individual planning is a process of developing goals and
objectives that the person with the disability wants to achieve (Shaddock, 2002).
However, the New South Wales (NSW) Department of Ageing, Disability and
Home Care (DADHC) is currently mandating within their tender documents and
funding guidelines that all services must take a Person Centred Planning (PCP)
approach (e.g. Department of Ageing, Disability and Home Care, 2009e, 2009g)
towards ensuring individual outcomes such as QoL. Person centred planning can
be viewed as an extension of the previous model of individual planning (Shaddock,
2002).

Any model of service for a person with an intellectual disability should have a
primary focus on the needs of the individual as the central component of its
delivery (Kendrick, 2009a). The PCP approach is one means of achieving this goal
as it emphasises the needs and requirements of each individual over that of other
stakeholders, such as the family or the service itself. PCP’s focus is on what the

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individual wants and on his/her aspirations and abilities (O’Brien & O’Brien,
1998). The antithesis of PCP is found in pre-determined models of service such as
generic or group based activity programs that are commonplace within some aged
care facilities. PCP is designed for all people regardless of their level of disability or
support needs (Sanderson et al, 1997). PCP has five central themes that distinguish
it from other standard forms of planning, as outlined below:
1. The person is at the centre. Planning focuses on establishing what the
person wants to do and achieve, her/his abilities and the supports
needed;

2. If the person chooses, his/her wider social network is involved as a

full partner and the contributions and knowledge of families, carers
and members of the local community are valued;

3. There is a partnership between the person, his/her family, carer or

advocate and the service provider. All parties involved have a shared
commitment to action;

4. The whole of life is considered. Within available resources, services

align with the goals and needs of the person and look beyond
traditional constraints; and

5. There is continued listening, learning and action. New goals are set as
a person’s experience, needs and expectations grow. (Department of
Ageing, Disability and Home Care, 2009g, p. 10)

There are a number of similarities between PCP and previous systems such as
Individual Planning (IP). It is argued that the reason PCP is different to any prior
models is due to the fact that it focuses on what the individual wishes, irrespective
of what services are available. Other planning systems, such as IP, have tended to
only offer options that are already available for the individual to access. In contrast,
PCP is designed to examine any aspiration of the individual, regardless of whether
it appears feasible for the person, his/her family, or the disability support
organisation (Kilbane & McLean, 2008).

DADHC believes that the concept of PCP is linked to significant positive outcomes
for people with intellectual disabilities (Department of Ageing, Disability and
Home Care, 2008d) and are requiring its implementation into the services it funds
(Department of Ageing, Disability and Home Care, 2009e). However, it is

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important to recognise that PCP is not simply a process of assessment by DADHC.
Assessment is often utilised by services and government departments as a
mechanism to determine eligibility or, in fact, to deny service. As noted by
Kendrick (2000, p. 2) “there is a profound temptation to try and translate all
desirable human capacities into bureaucratic methodologies”. Such assessment,
when used in isolation, can be a means of declining appropriate services to
individuals who have more complicated or challenging disabilities. This problem
can be seen through the statement that “person centred planning in the hands of
people that lack sufficient regard for the person could actually be used harmfully”
(Kendrick, 2000, p. 3).

In spite of the positive aspects within the process of PCP, it should not be seen as
the solution to all problems. An organisation cannot implement widespread
changes for the individuals it supports unless it first ensures that the staff it
employs are committed to the process (Kendrick, 2009b). The entire organisation
must be genuinely dedicated to achieving the best possible outcomes and not
merely be paying lip-service to the concept.
People and what they are authentically like are more predictable of
what an organization can achieve than are the formal mission
statements, policies and slogans that supposedly guide the individuals
in the organization. (Kendrick, 2000, p. 2)

The adoption of PCP within a service is not sufficient; it must be accompanied by a

change in thinking by all parties to ensure that the individual continues to remain
at the forefront and not disappear as soon as the planning process is completed
(Kendrick, 2009b).

Another significant impediment to PCP is the fact that it is often easier for support
agencies to provide a standardised model for all service users. The goal of most
services is to provide the best possible results for its client group with the least
possible problems. The easiest way to achieve this outcome is usually through the
use of an existing model rather than developing an inclusive model that is
individualised for each person (Clement & Bigby, 2009). However, if PCP is to be
successful the introduction of non-standardised systems and options must occur

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and continue to be applied. It is very possible to use PCP with good intent but for
the service not to make the necessary reforms to provide “the kind of ongoing
support and dissidence necessary to bring into existence something unique and
worthy” (Kendrick, 2004, p. 4).

In spite of the recognised problems with PCP, the inherent concepts provide
services with a methodology with which to offer programs which are
individualised and based around personal need. PCP and its integration into the
many disability services in Australia represents a fundamentally different method
of working with people to the traditional approach within the residential aged care
system. However, PCP is still a relatively new approach to individual planning and
there is limited research and evidence regarding its long term efficacy (Bigby,
2004). PCP will also not achieve any significant outcomes unless resources
commensurate with the goals are available. An individual can have many desires
very clearly documented within his/her plan but if government funding is
inadequate there is only a limited likelihood that they will be achieved, regardless
of the intent of stakeholders. This issue is the major drawback with PCP in NSW
and can only be overcome by cooperation between government departments, non-
government organisations, families, other stakeholders and the individual.

The focus that the disability sector currently places upon the individual through
approaches such as PCP, and the process of ensuring that the systems are centred
on the needs of the person and not the service, are two ideals that must be
maintained as people with intellectual disabilities transition into aged care
programs (Bigby & Knox, 2009). One of the major issues that disability service
providers report with the integration of a person with an intellectual disability into
generic aged care models relates to the fact that this step results in a move
backwards for the individual in terms of quality of life and personal skill
maintenance (Australian Human Rights Commission, 1989; Julie Derley, pers.
comm., 9 June 2009). Likewise, the relocation of an individual with a disability
from his/her family home either into a residential aged care facility or another
more appropriate community model is a complex and difficult process, the success

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of which can be contingent upon the effectiveness of the planning. Bigby (2004, p.
59) concluded that PCP needed to be supported by “education and training of staff
to counter stereotypical attitudes and to develop the skills necessary to engage
older people in the everyday activities of life”. Without this associated training for
direct care workers there remains the possibility that the desired goals for the
individual will not eventuate, regardless of the organisation’s overall intent.

The widespread movement towards inclusive policies and the implementation of

deinstitutionalisation has resulted in a dramatic change in how disability services
support people with intellectual disabilities (Bigby, 2006). Associated with this
change is a large reform in the way disability staff are expected to support their
client group (Felce, 2005). As noted by Hatton et al (2002, p. 1)
staff provide the interface through which national, regional and
organisational philosophies and policies are translated in practical
action directly affecting the quality of life of people with learning
disabilities.

Research has shown that the actions and attitudes of staff is significantly related to
the quality of life of the people with disabilities that they support (Felce, 1996;
Hatton et al, 1999). However, there are substantial challenges facing the disability
sector and its workforce, in particular issues such as workplace stress and staff
retention (National Disability Services, 2009a). Supporting people with intellectual
disabilities, high personal care needs and challenging behaviours has been linked
with high staff turnover (Felce, Lowe & Bestwick, 1993; Hatton et al 2002). Studies
have shown that between 25 percent (Robertson et al, 2005b) and 32.5 percent
(Hatton et al, 1999) of direct care staff experience significant levels of work related
stress. In order to address both the predicted shortages of staff and the ongoing
problems associated with staff retention, disability organisations have to look at
structural reform in how they train and support their staff.

2.6 The Disability Sector Workforce

Concerns are being expressed, both in Australia and overseas, regarding ongoing
difficulties in attracting and retaining appropriate workers (McConkey et al, 2007).
As with many countries round the world, it is anticipated that Australia is going to

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experience a shortage of skilled employees across all sectors. It is predicted that
these shortages will occur across a large number of different professional
occupations including health care workers. It was noted that “shortages have
emerged as a result of industry or sector growth, high attrition rates of workers and
insufficient investment in training” (NSW Board of Vocational Education and
Training, 2005, p. 9).

Disability organisations are considered to be part of the wider Health and

Community Services sector. This component of the Australian workforce employs
over one million people and is the third largest industry in the country (Victorian
Council of Social Services, 2007). To compound the problem of skills shortages,
employment growth within the Health and Community Services sector was
projected to increase by over 3 percent from 2005 to 2010, with a numerical growth
of nearly 18 000 new positions within hospitals and nursing homes alone (NSW
Board of Vocational Education and Training, 2005, p. 9). Pay rates for workers in
the disability sector are generally regarded as poor and many employees report
considerable frustrations with their daily work (Angley & Newman, 2002).
However, direct care workers also indicate that they gain significant satisfaction
and joy from their daily interactions with people with intellectual disabilities and
that this factor is one of the main reasons they remain within the disability
workforce (Victorian Association of Health and Extended Care, 2002).

The NSW Department of Education and Training (DET) identified within their
2005-2008 strategic plan for vocational education and training the fact that the
ageing demographic will result in an increase in employment opportunities within
human services such as “hospital and nursing home care, community support
services and personal services which cater for the needs of older people” (NSW
Board of Vocational Education and Training, 2005, p. 5). In the follow-up strategic
plan for 2008-2010, NSW DET again noted the Health and Community Services
sectors as both “high growth” and “regional growth industries” (NSW Board of
Vocational Education and Training, 2008, p. 10).

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Hatton et al (2002) note that some disability organisations have lower levels of staff
stress and overall employee turnover and that these desirable outcomes are
associated with factors such as direct care staff’s training and skill development, as
well as the overall organisational structure and culture. Participation in relevant
education programs has been associated with an increase in employee retention
rates (Rosen, Yerushalmi & Walker, 1986). A lack of training has been identified as
a fact that can result in higher levels of staff turnover (Knapp, Cambridge &
Thomason, 1989). Appropriate training and associated modifications to service
delivery and organisational structures is considered necessary to assist staff to
provide efficient and suitable support to people with intellectual disabilities (Lowe
et al, 2007). A research study conducted by Durnin and Freeman (2005) found that
levels of knowledge and understanding were significantly higher in a group of
staff who had completed a twelve week training course about challenging
behaviours than in a control group. Wilkinson, Kerr and Cunningham (2005)
argued that support and training for direct care staff is a crucial aspect of successful
ageing in place for people with intellectual disabilities. However, they also noted
that inappropriate or irrelevant training can actually lead to worse outcomes than
no training at all.

Research over the past twenty years has indicated that the interaction of staff and
residents within supported accommodation settings and other specialist programs
are vital factors in the overall quality of life for the individual with a disability
(Janicki & Dalton, 1999). The staff members’ experience, attitudes and philosophies
have all been linked to the success of the programs in which they work (Baker,
Seltzer & Seltzer, 1977; Braddock & Mitchell, 1992; Broadhurst & Mansell, 2007;
Racino et al, 1992; Rosen, Yerushalmi & Walker, 1986; Wong & Wong, 2008).
Support staff who display individual attributes such as honesty, trust and a
nurturing attitude are highly valued by people with intellectual disabilities, whilst
characteristics such as immaturity and impatience were perceived negatively and
as barriers to forming a good working relationship (Clarkson et al, 2009).

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Staff members within disability services are required to serve a number of different
and often disparate roles. For example, the job description for a direct care worker
within a disability residence may include tasks such as teaching social and
independent living skills, assisting individuals to access and integrate into the local
community, personal care, administering medications, cleaning and cooking
(National Disability Services, 2009c). It is concerning that despite these varied, and
at times critical, responsibilities, there is no compulsory accredited training for
direct care workers within the disability sector in Australia. It has been reported
that many staff within accommodation services have extremely limited education
or training in providing support to people with disabilities (Larson, Hewitt &
Anderson, 1999; Lime Management Group, 2006). This situation is in spite of the
significant association between staffing outcomes and the level of staff training and
education (Ford & Honnor, 2000).

At the current time, people with an intellectual disability who are ageing present a
unique challenge for support staff. Within the disability field, the focus of
programs is predominantly upon the teaching of new personal skills and
increasing independence. This situation is in contrast to the aged care sector that
has a support model based upon greater levels of personal assistance and
specialised nursing interventions. A person with an intellectual disability who is
experiencing age-related issues often has needs that fall outside the expertise of the
disability sector staff, while the staff within aged care services often have limited or
no experience in dealing with people with intellectual disabilities (Hussein &
Manthorpe, 2005).

As the disability sector and aged care services attempt to adapt to the changing
demands placed upon them by this relatively new phenomenon, the training and
organisational support structures available for their staff must be similarly
modified to reflect these changes in work practices. Mansell et al (2008) identified
that the quality of support provided to people with intellectual disabilities is
affected by a number of key factors, which include staffing issues such as
qualifications, experience and training, as well as organisational management,
culture and structures. Corrigan and McCracken (1998) argued that a combination

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of both educational training and organisational support for staff were important in
the development of relevant and appropriate programs for service users.

Within Australia, there are no prerequisite qualifications or training for people who
wish to work as support workers within the disability sector. Studies have shown
that accredited training levels vary greatly amongst service providers, with some
suggesting that only 5 to 10 percent of staff employed by non-government agencies
have accredited relevant qualifications (Department of Human Services, 2005).
Areas of weakness in the knowledge base of existing staff members will start to
appear as issues associated with ageing become more prevalent and the training
and support options must be flexible enough to ensure that these gaps in skills can
be addressed. At the same time, the training for new employees must be
comprehensive enough to ensure that all staff receive the basic knowledge and
information to facilitate their integration into the workplace.

2.6.1 Training for Disability Support Staff

The relationship between service quality and a comprehensive planned system of
training for the staff that support people with intellectual disabilities has been
researched, albeit somewhat intermittently, for many years (e.g. Hatton et al, 2002;
Hogg & Mittler, 1987; Koegel, Russo & Rincover, 1977; Landesman-Dwyer &
Knowles, 1987; Lovaas et al, 1973; Mansell et al, 2008; McVilly, 1997; Mittler, 1981).
Unfortunately, the disability sector has not traditionally been successful in
providing training that is relevant, efficient and effective for its staff (Braddock &
Mitchell, 1992).

There is a relative scarcity of research since 2000, specifically in Australia, or

generally elsewhere in the world, that examines the outcomes of training for the
actual participants. The value of the training for the individual staff member is
often noted as a secondary consideration. The majority of studies instead focus
upon, and detail improvements for, clients following the implementation of
training programs within a service. The lack of appropriate research into
evaluation of training for staff was noted by Beech and Leather (2006, p. 39), who

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concluded that “few trainers have attempted to perform and publish objective
evaluations”.

Parmenter (1991) highlighted the disparity between the day to day work
requirements of employees and the actual training that is provided to them. This
trend is in spite of the fact that studies show a correlation between appropriate
training and desirable outcomes such as minimising challenging behaviours
(Campbell & Hogg, 2008; Grey, Hastings & McLean, 2006), improving employee’s
psychological well-being and reducing personal ‘burnout’ (Chung & Harding,
2009), enhanced communication between staff and clients (McMillan, Bunning &
Pring, 2000), and higher levels of individual engagement in daily activities (Mansell
et al, 2008). In addition, Dempsey and Arthur (2002) argue that the provision of
training can actually positively influence direct care workers’ intent to remain
within the disability field.

Within the disability sector there are many different research examples of both
successful (e.g. Fahey-McCarthy et al, 2009; Smith, Wun & Cumella, 1996; Tierney,
Quinlan & Hastings, 2006) and failed (e.g. Cullen, 1992; Foxx, 1996) training
programs for staff members over the past two decades. Staff are often enrolled in
education programs but without the opportunity to use the newly acquired
knowledge their skills are not developed and any benefit may diminish without
appropriate follow-up training (van Oorsouw et al, 2010). The goal of training for
staff ultimately must be to achieve an overall benefit to the people with disabilities
that are being supported. It was concluded by Whitehurst (2008, p. 10) that
where staff receive good quality training, it is clear that pathways of
care can be identified at an early stage, resulting in good quality,
timely, and appropriate intervention, whether psychological,
behavioural, or pharmacological.

Hussein and Manthorpe (2005) argued that staff skills, knowledge and values are
key components of any high quality support program for people with intellectual
disabilities. Positive and appropriate attitudes of direct care staff are vital if generic
policies such as inclusivity are to be appropriately implemented (Henry et al, 2004),
with training required to ensure all sectors of the disability workforce gain an equal

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understanding of important issues (Jones et al, 2008). It was noted by Mansell et al
(2008) that there were a variety of factors, including staff attitude, management
support and supervision, that, while not directly associated with content or
delivery, influenced the actual workplace outcomes of training.

Landesman-Dwyer and Knowles (1987) conducted one of the first examinations of

the process of staff training within a residential setting. They proposed that the on-
the-job performance of employees is multi-faceted, including aspects such as the
social environment, personal characteristics, supervision by management and any
specific training that is undertaken. The effectiveness of any training program can
only be measured accurately if these other factors are also taken into consideration.
As noted by Totsika et al (2010), the same education programs can achieve different
results in varying training sub-groups.

The social environment in which the staff work, the inter-relationship between the
various workers and the support provided by supervisors are all factors that need
to be analysed both prior to and after the training and before a conclusion about the
effectiveness of the training program can be reached. The social environment of the
workplace incorporates the relationship between the individual with the disability,
the staff who provide the direct support services, supervisors and the management
structure, associated health professionals, case managers, family and advocates
(Mascha, 2007). In some circumstances, an excellent and well presented training
program may not achieve any significant improvements in service provision,
whereas the modification of certain elements in the social environment may result
in better outcomes (Landesman-Dwyer & Knowles, 1987). It is proposed that, if
training is to be effective, the content of the program must be closely aligned to the
staff perception of what they require (Sanders, 2009).

Landesman-Dwyer and Knowles (1987) conceptualised a two stage model that

predicts the determinants of the effectiveness of training programs in the short and
long term. The immediate consequences of staff training are reliant upon the
trainee’s perceived relevance of the course to their current work role, how

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applicable the content of the training is with regard to the actual job requirements,
how effectively the trainer presents the information and knowledge to the
participants, and the opportunities for the staff member to actually utilise the new
skills.

In contrast, the long term effectiveness of training was considered to be reliant

upon three primary environmental factors. These three issues were the extent to
which the inherent components of the job complement the goals of the training, the
proportion of staff within a workplace that have participated in the training, and
the perceived importance of the training within the context of the work
environment. Research by Totsika et al (2010) indicated that a combination of
training methods may be necessary for long term changes in staff behaviours and
attitudes. In other fields, such as medical procedures training, it has been found
that peer-based learning options can be as effective as those conducted by
experienced trainers (Weyrich et al, 2009).

Research has identified three key components within any training program for
disability support staff: the implementation phase, the maintenance phase and the
evaluation phase (Wood, Berry & Cowell, 1985). The methodology and
effectiveness of implementing the training program will have a direct influence on
the way the training is maintained. Training can be successfully provided to staff
but maintaining a positive change in the staff associated with the knowledge or
skill acquisition may be difficult (Campbell & Hogg, 2008). Formal evaluation at
the end of the maintenance phase of the training is necessary to allow appropriate
judgements on the program’s long term effectiveness. As noted by Smidt et al
(2007), short term improvements may not be sustained over an extended period of
time.

Wood, Berry and Cowell (1985) defined two approaches to implementing training
for a large group of staff who support people with intellectual disabilities. The first
option is that all new workers would undergo the training program, and with the
turnover of employees over time, the new concepts will infiltrate throughout the

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entire organisation. Moores and Grant (1976) conducted a study examining the
attitudes of staff members within residential settings. They noted that effective
training resulted in positive attitudes amongst new staff who work with people
with intellectual disabilities. Hatton et al (2002) identified the importance of
providing younger and more inexperienced staff in particular with ongoing skills
development and training as a means of supporting this group of people to remain
within the disability sector workforce.

However, one of the problems with only providing training to new staff is that the
positives identified by Moores and Grant (1976) can be diminished by the older and
more established staff who are not undergoing the training, through their direct
and indirect influence on the new employees’ perspectives. A second approach to
training is to provide the training to all existing staff concurrently. By taking an all
encompassing tactic to training, all staff will be on a level standing and it will be
possible to create an environment conducive to implementing the new skills and
knowledge. However, this approach will often see the training groups being
composed of individuals with very different levels of knowledge and skills. This
scenario presents significant problems for the trainer who has to provide content
that is suitable for both highly experienced workers and complete newcomers to
the disability sector.

Hogg and Mittler (1987) noted a series of systemic problems associated with the
provision of training within intellectual disability services. These flaws include the
institutional tradition of training which emphasises the paramedical and custodial
components of care, the neglect of management and organisational factors in
facilitating change management of appropriate practice, a lack of knowledge
within generic providers and integration into mainstream community services, and
the isolation that exists between staff members. It has also been reported that the
prevailing beliefs of direct care staff may be one of the major impediments to the
successful provision of training (Grey, McClean & Barnes-Holmes, 2002; Jones &
Hastings, 2003). A report by Choy et al (2008) into effective models of training in
child care services noted the importance of other potentially conflicting factors

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including regulatory requirements and the industrial relations environment of the
workplace.

McVilly (1997) conducted a study with staff that support individuals with
disabilities in community based residential facilities. McVilly’s study surveyed
eighty-six support staff specifically on the issues of training and professional
support. The direct care respondents considered a number of key skills areas such
as assessment, dealing with challenging behaviours and communication as being of
importance. However, the participants also reported dissatisfaction with the
training being provided in these key areas. Some of the comments from the staff
indicated that the failings of the training were a key factor in the high turnover of
employees. McVilly reported that very few direct care staff considered their
employment as part of a longer term career. The main reasons cited for looking for
other employment were primarily the lack of pay, career prospects and further
educational opportunities. It was noted that
the quality of staff training may be an important means of minimising
staff turnover by laying the foundation to career paths based on
accredited courses linked to wage incentives. (McVilly, 1997, p. 21)

McVilly concluded that the quality of the training being provided to direct care
staff members was a vital component in reducing the level of turnover. Other
studies have reported similar results with issues such as training, supervision and
peer support considered important factors in maintaining morale and minimising
stress (Mascha, 2007).

Since the study by McVilly (1997), the majority of intellectual disability training
research in Australia has focussed upon improvements in client outcomes (e.g.
Stancliffe et al, 2005) rather than staff outcomes. Training has also been
predominantly targeted towards staff working with younger and middle aged
people with intellectual disabilities, with the different issues associated with ageing
not featuring strongly (McCallion & McCarron, 2004).

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A study in Ireland by Fahey-McCarthy et al (2009) reported that disability staff
were generally untrained in areas of aged services including dementia support and
palliative care. Dowse, McDermott and Watson (2009) concluded that there was
minimal training that met the needs of Australian workers assisting ageing people
with disabilities. The lack of appropriate and current research into the efficacy and
relevance of training in aged care issues for disability workers in Australia requires
addressing, otherwise the successful implementation of any new programs may be
jeopardised.

2.6.2 Education and Training Programs in Australia

The provision of training and education programs within Australia falls into two
distinct classes: accredited training and non-accredited training. The accredited
training category is split further into Nationally Recognised Training and Other
Accredited Training. Nationally Recognised Training refers to units and courses
that have been reviewed and assessed independently as meeting set government
guidelines to ensure their quality and consistency across Australia. These courses
are all contained within the Australian Qualifications Framework (AQF) as shown
in Figure 2 below.

The AQF specifies exact titles and guidelines for each qualification and ranges from
Certificates of Education provided by Schools through Vocational Education
courses such as Certificates I, II, III, IV, Diploma and Advanced Diploma, to
Tertiary Education qualifications including Bachelor, Masters and Doctoral
Degrees (Australian Qualifications Framework Advisory Board, 2007).

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 Figure 2 – Australian Qualifications Framework
(Source: Department of Education, Science and Training, 2002).

Other Accredited Training refers to units that provide the individual with a
qualification but are not specifically covered by the AQF. Other accredited training
courses could include first aid or protective behaviour programs (National
Disability Services, 2007d). Non-accredited training refers to any course that has
not gone through the external assessment process that is part of the Australian
Qualifications Framework. The types of courses that are non-accredited are often
highly specific to a certain situation or environment such as an induction program
for new workers in a supported residence for people with intellectual disabilities.
Other examples of non-accredited training include courses aimed at teaching a very
specialised skill within a workplace, in-house or product-based training, or when
the trainer is not formally accredited (National Training Information Service, 2008).

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The training sector within New South Wales (NSW) has changed dramatically over
the past two decades. Vocational Education and Training (VET) has traditionally
been considered as providing specialist education in predominantly trade areas
such as carpentry and plumbing. However, the VET sector has expanded in the
past ten years and currently covers a wide variety of other employment areas
including aged care and disability work. As of 31 March 2010, there were 327
different VET courses accredited for use in NSW (National Training Information
Service, 2010).

Training and assessment is now based around the concept of demonstrated

workplace competency rather than upon classroom based written testing
(Department of Education, Science and Training, 2006). An individual is assessed
on her/his capacity to perform the requisite duties expected of the position, and
the evaluation process will often involve the person having to complete a
successful demonstration of workplace based tasks. This change to skill based
demonstrations is particular relevant to the disability sector. Disability workers
have traditionally had low levels of formal qualifications (Department of Human
Services, 2005). It is hoped that the move towards identifying the individual’s
ability to successfully perform the tasks of the job, rather than merely his/her
aptitude in completing written assignments, will facilitate a wider range of staff to
achieve a formal qualification.

2.6.3 Aged Care and Disability Work Training Programs in NSW

Within the Australian Qualifications Framework (AQF), both aged care and
disability work are classified as part of the larger Community Services and Health
Sector. All accredited VET qualifications for ageing and disability employees are
specified in the Community Services and Health Training Package. This package details
the grading and levels of the qualifications as well as providing generic
descriptions of job titles and work areas. The current specific aged and disability
VET courses accredited within the Community Services Sector are:

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 Certificate III in Aged Care,
Certificate III in Disability,
Certificate III in Home and Community Care,
Certificate IV in Aged Care,
Certificate IV in Disability,
Certificate IV in Home and Community Care,
Diploma of Disability, and
Advanced Diploma of Disability (Community Services and Health Industry
Skills Council, 2008a).

There are also several generic courses such as Certificate III and IV in Community
Services Work, and Certificate IV in Leisure and Health. These are qualifications in
which participants complete a variety of units pertaining to the wider community
services sector such as drug and alcohol, children and youth services, disability
work, aged care, mental health, community housing and employment support
(Community Services and Health Industry Skills Council, 2008a).

There are also a limited number of bachelor level university qualifications

specifically designed for direct care disability workers. These options include:

Bachelor of Applied Science (Disability Studies) at Deakin University,

Bachelor of Applied Science (Disability) at Royal Melbourne Institute of
Technology University (RMIT),
Bachelor of Disability and Community Rehabilitation at Flinders University,
Bachelor of Health, Ageing and Community Services at the University of
New England,
Bachelor of Human Services (Disability Studies) at Griffith University,
Bachelor of Inclusive Education and Disability Studies at Australian
Catholic University.

A number of universities also offer postgraduate studies at the Graduate

Certificate, Masters and Professional Doctorate levels. Many of these options are

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aimed at managers and Chief Executive Officers rather than direct care workers.
These courses include:
Graduate Certificate in Educational Studies (Disability Studies) and Master
of Disability Studies at the University of Newcastle,
Graduate Certificate of Health Science (Developmental Disability) and
Master of Health Science (Developmental Disability) at the University of
Sydney,
Graduate Diploma in Disability Studies, Masters of Applied Science
(Disability Studies) and Doctor of Philosophy (Disability Studies) at RMIT,
Graduate Diploma in Health Management, Master of Health Management
and Doctor of Health Service Management at the University of New
England,
Master of Disability Studies at Flinders University,
Master of Human Services (Disability Studies) at Griffith University,
Professional Certificate in Disability Studies and Graduate Certificate in
Disability Studies at Edith Cowan University.

Historically, there has also been a specialist training category for Registered Nurses
who worked directly with people with intellectual and developmental disabilities.
In 1968, the Nursing Registration Board of NSW formally recognised the position
of Mental Retardation Nurse to supplement existing nursing categories such as
medical/surgical, midwifery and infants. The training for Mental Retardation
Nurses was developed over time and by 1980 it involved a total of one thousand
hours of training. Other Registered Nurses who wished to change speciality to
mental retardation were required to complete 560 hours of training in the area
(Nurses Registration Board, 1998).

In 1985, training for nurses changed from being primarily based in teaching
hospitals to being a designated university course. This movement saw the
amalgamation of the nursing category Mental Retardation, by then known as
Developmental Disability, into one general register with other previously separate
categories such as Medical/Surgical and Psychiatric. However, this change also

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resulted in some training in the areas of developmental disability and mental
health nursing becoming pre-requisite units for all nurses to complete as part of
their education (Nurses Registration Board, 1998). However, studies since the
merging of the categories have shown that the disability content in many current
universities’ nursing curricula in Australia is limited (Johnston & Dixon, 2003) and
that attitudes towards people with disabilities amongst the nursing profession are
often poor (Seccombe, 2007; Thompson, Emrich & Moore, 2003).

There does remain an association that represents the interests of generalist

registered nurses who choose to work in the field of intellectual disability.
PANDDA (Professional Association of Nurses in Developmental Disability Areas)
holds an annual conference as well as releasing information and position
statements on issues around intellectual disability. However, specialist training for
registered nurses in this area is limited, and the overall profile of disability work is
seen to have decreased considerably since the decision was made to abolish the
category of Developmental Disability Nurse (Michael Barry, pers. comm., 8
February, 2010).

As of March 2010, employees in both the aged and disability work sectors were not
required to have a minimum qualification. However, the accreditation system for
residential aged care facilities mandates that organisations must have
appropriately trained staff and, in practice, this requirement is considered to be a
minimum of a Certificate III in Aged Care. If a residential aged care facility cannot
demonstrate that their staff either have, or are in the process of obtaining, a
Certificate III in Aged Care, the facility’s accreditation could be removed. There is
no equivalent mandatory qualification for disability workers although there is a
push by groups such as Disability Professionals NSW (DPNSW) and Disability
Professionals Australasia (DPA) to have a Certificate III in Disability as a minimum
requirement for workers within the disability sector (e.g. Disability Professionals
NSW, 2007b). There appears to be consensus across the disability industry that the
need to legislate for minimum qualifications is both appropriate and desirable

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(Kevin Mead, pers. comm., 24 February, 2010; National Disability Administrators,
2006); however, after many years of discussion it has not been enacted.

2.7 Summary
The development of disability and ageing support models in Australia since
colonisation is complicated and has involved major shifts in both philosophical and
operational directions. In order to propose genuine options for service
improvement, it is important to understand the history of how disability
organisations originated, what support structures are available and which guiding
principles for service delivery are currently mandated by government and
expected by the community. An examination of the past two centuries of service
delivery would indicate that, if realistic solutions to the ageing issues of people
with intellectual disabilities are to be reached, leadership and initiative must be
shown by both state and Australian government departments, in conjunction with
the non-government sector.

At the present time, the existing departmental policy and procedural guidelines
often actively work against innovative or practical solutions. The current
incompatibility between the disability sector and the aged care service system at a
state and commonwealth level means that both jurisdictions need to be actively
supportive of innovative options or the current situation will simply continue to
worsen. However, during the 20th Century, the implementation of innovative
programs by Non-Government Organisations (NGOs), supplemented by
appropriate and relevant training for direct care staff members, has been shown to
be effective in providing appropriate support options for people with intellectual
disabilities.

The current systems are not adequately meeting the needs of people with an
intellectual disability, particularly as they age. One major problem is the absence of
research that focuses upon identifying the specific needs of disability support
workers who support people who are ageing. The direct care staff members are in

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an ideal position to pinpoint the main issues that pertain to ageing and intellectual
disability and to identify the programs and training support required to redress
perceived problems. The following chapter outlines the research design used to
meet the current study’s goals, as previously described in section 1.2 Research Aims
and Objectives. It details and justifies the choice of methodology, discusses the
instruments used and specifies the selection process for the participant group.

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 Chapter Three – Methodology

Introduction
The purpose of this study was to identify the key issues facing rural disability
services’ direct care staff with respect to the ageing needs of their clients. Chapter
Three begins by outlining the reasons for utilising a Delphi Method approach and
reviewing the process, including both its key features and limitations. This section
is followed by a justification of this research design with respect to the current
project, and the manner in which the study was conducted. The chapter discusses
the population sample and how it was recruited, details instrumentation used and
describes management of the data. The means used to determine when the
participants reached consensus on the importance of each separate item is
explained. Chapter Three concludes with a description of the limitations inherent
to the research.

3.1 Methodology
The research objective of the current study was to identify the key issues that rural
disability workers perceive people with intellectual disabilities face as they age and
how these issues impacts on each worker’s ability to perform her/his job (see
section 1.2 Research Aims and Objectives). The main underpinning philosophy of the
research was to gain the perspective of the front-line disability workers from across
rural New South Wales (NSW). This approach was to try and prevent a reliance on
the potentially ‘second-hand’ viewpoint from managers who may be removed from
the day to day issues in the provision of personal support.

A variety of both quantitative and qualitative research methodologies such as

cross-sectional surveys, focus groups, in-depth structured interviews and case
studies were considered as means for meeting the research goals. The large
geographic area of NSW made it unviable to successfully conduct face-to-face in-
depth interviews with a suitable number and variety of participants. It was also
considered that a pre-determined questionnaire or survey model would not

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provide sufficient flexibility to allow participants to fully contribute and articulate
their individual viewpoints.

A research methodology that incorporated both qualitative and quantitative

components was deemed to be the most appropriate mechanism for this type of
research. This design would facilitate the project participants to have direct input
in identifying the key issues facing them, but then also allow for an analysis of the
relative importance of each one. The researcher considered the factors involved and
decided that the Delphi Method provided the most viable technique to meet the
stated research goals of the study.

3.1.1 Overview of the Delphi Method

The Delphi Method is a structured process for collecting information from a variety
of different individuals who have a particular expertise, interest or knowledge in a
specific area (Adler & Ziglio, 1996; Franklin & Hart, 2007). It was developed by the
Rand Corporation during the early 1950s as a means of predicting the effects that
war and technology may have upon the world (Beaumont, 2003). In the decades
since its development, the Delphi Method has become a widely used instrument
for forecasting and decision making in a variety of disciplines (Skulmoski,
Hartman & Krahn, 2007). It has been used to evaluate and consolidate a majorative
opinion on a specific issue, topic or concept (Linstone & Turoff, 1975). Inherent to
this methodology is the process of gathering participants’ views and sharing these
opinions within a larger group without actually debating the issues in a combative
environment (McGraw, Browne & Rees, 1976). The Delphi Method was described
as the
systematic solicitation and collation of judgments on a particular
topic through a set of carefully designed sequential questionnaires
interspersed with summarized information and feedback of opinions
derived from earlier responses. (Delbecq, Van de Ven & Gustafson,
1975, p. 10)

Specifically, the Delphi Method is structured in such a way as to facilitate the

researcher’s access to the collective knowledge of a disparate group of experts

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while minimising the negative impact that may result from personal interactions
between the participants (Hasson, Keeney & McKenna, 2000).

The four main elements of the Delphi model, as originally identified by Linstone
and Turoff (1975), are:

1. individual contributions of information and knowledge,

2. assessment of the group’s views into an aggregated response,
3. an opportunity for the participants to re-evaluate their original views, and
then to revise and re-submit their thoughts, and
4. the participants in the Delphi having some level of anonymity with respect
to expressing their individual viewpoints.

These four key features are considered essential if a research project is to be

considered to conform to the Delphi model (Hsu & Sandford, 2007). In the initial
phase of a Delphi Method project, information and knowledge about the identified
issue is sought from each participant in the study. Typically, this phase of research
is quite unstructured which allows the experts sufficient freedom to identify the
issues they consider important (Rowe & Wright, 1999). All of the views of the
participants are then collated, and the level of agreement and disagreement
evaluated (Linstone & Turoff, 1975). The participants are then given an opportunity
to reconsider their responses in relation to any identified areas of significant
disagreement. The last stage is an analysis of all the information gained from the
participants and a final assessment of any group consensus on the issues.

The selection of the individuals to participate in a Delphi project is considered to be

one of the most critical factors of the study (Wiersma & Jurs, 2005). It is believed
that a Panel member must have a level of ‘expertise’ in the research area for them
to be an appropriate participant (Heath, Neimeyer & Pedersen, 1988). A number of
researchers including Sackman (1974), Duffield (1989) and McKenna (1994) all
expressed concerns about the application and varying interpretation of what
constituted an expert on a topic. Goodman argued that the term ‘expert’ was
potentially dangerous, and instead proposed that

126
 it would seem more appropriate to recruit individuals who have
knowledge of a particular topic and who are consequently willing to
engage in discussion upon it without the potentially misleading title of
“expert.” (Goodman, 1987, p. 732)

The following four attributes were listed as pre-requisite for participants to be

selected for a Delphi Panel:

1. every participant has in-depth knowledge of the issue,

2. each individual is willing to allocate the necessary time needed to properly
participate in the process,
3. each person feels a personal involvement in the problem, and
4. all participants believe that the information obtained from the study will
ultimately be of value, either to themselves individually or to the sector in
general. (Delbecq, Van de Ven & Gustafson, 1975)

The number of participants required for a Delphi Panel will vary in accordance
with the issue being considered, with no definitive formula for determining the
ideal size (Delbecq, Van de Ven & Gustafson, 1975). Linstone and Turoff (1975)
proposed that three issues to consider when determining the size of the Panel are:

the participants are all experts in their own right,

the number of participants is sufficient to ensure a suitable quantity of
diverse viewpoints and opinions, and
the participants should each bring to the Panel different knowledge and
experiences.

Linstone and Turoff (1975) recommended that a Delphi Panel should be composed
of anywhere between ten and fifty participants. However, other researchers have
narrowed the range to smaller groups. Adler and Ziglio (1996) proposed that a
Delphi Panel could be successfully established with between ten to fifteen
participants. A Panel consisting of between fifteen and twenty was recommended
by Ludwig (1997). Skulmoski, Hartman and Krahn (2007) commented that smaller
panels of around fifteen participants were appropriate for homogeneous groups,
whereas hetrogenous samples may require hundreds of panel members. It is noted

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that high levels of participant attrition can occur as a consequence of the long
duration and complexity of Delphi studies (Wiersma & Jurs, 2005).

3.1.2 Strengths and Limitations of the Delphi Method

The Delphi Method is considered a relevant research methodology when the issue
cannot necessarily be resolved simply through pre-determined survey questions
(Rowe & Wright, 1999). The Delphi allows participants to make individual
subjective judgements on issues; however, it culminates in a collective decision by
the entire Panel (Adler & Ziglio, 1996). It is particularly appropriate when data is
collected over a wide geographic area which prohibits the use of individual or
small group interviews. The structured system underpinning a Delphi supports
individuals from diverse backgrounds, experiences and knowledge to all
contribute to the research (Skulmoski, Hartman & Krahn, 2007). As a consequence
of the confidentiality of responses, participants are free to disagree on issues in an
anonymous and safe environment. It limits the “bandwagon effect” (Linstone &
Turoff, 1975, p. 4), whereby one loud or overbearing personality may dominate a
group discussion, and the results may not accurately capture the opinions of the
wider participants. One of the major benefits of the Delphi structure is that it
provides participants with the opportunity to consider and review the issues in
their own time before they formally respond.

The Delphi Method has often been seen purely as a quantitative technique (Rowe &
Wright, 1999); however, it is a flexible research methodology that allows for the use
of qualitative analysis as well (Wiersma & Jurs, 2005). The Delphi technique
provides a structured model within which the researcher can use qualitative,
quantitative or mixed research methods. This flexibility faciliates the researcher to
examine a variety of different questions and contexts by providing the participants
with suitable time and opportunity to both suggest and respond to pertinent issues
(Skulmoski, Hartman & Krahn, 2007).

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The Delphi Method has been criticised by some authors because of various
perceived inadequacies and limitations. The main criticisms about the Delphi
technique stem from the following issues:

there is a focus on current events which results in the possibility that past
and future events are undervalued,
the participants tend to judge future events in isolation and, as such, their
views may be overly simplistic,
many participants are experts within a limited field and this specialisation
may result in them having similarly limited viewpoints,
it is easy for the implementation of the Delphi to be compromised by the
researcher losing the necessary focus,
the questionnaire has a large impact upon the results, and any
inconsistencies in the format can therefore make it unsuitable for certain
participants, and
the researcher is in a position to influence or manipulate the responses of
the participants (Martino, 1983; Hsu & Sandford, 2007).

Sackman published an extensive critique of the Delphi Method in 1974, claiming

the method was unscientific and lacking in rigour. He further argued that many
researchers had a poor understanding of research methodologies and limited
background in social science (Sackman, 1974). According to Hill and Fowles (1975),
the surveys used in Delphi-style studies were often poorly worded and overly
ambitious. It was also proposed that the perceived ease of implementation of the
Delphi Method resulted in its use by people who lacked the necessary skills to
implement it appropriately (Linstone & Turoff, 1975). It was also noted by Rowe
and Wright (1999) that while the Delphi Method was designed to utilise the
expertise of individuals in a specific sector, many studies relied on the input of
university students who had to make judgments on issues where they had no
particular expertise.

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It has been proposed that the Delphi Method is appropriate for addressing a single
factor question; however, it is less useful for forecasting complex issues with
multiple dimensions (Gatewood & Gatewood, 1983; Gordon & Haywood, 1968).
This argument is based upon the premise that the Delphi Method, with expert
opinion being refined to achieve consensus, may not appropriately consider the
inter-relationship between items (Adler & Ziglio, 1996). However, it is important to
recognise that the Delphi Method is not designed to be directly compared to
statistical analysis. It has been developed for situations in which pure statistical
methods are either not practical or realistic and when the subjective viewpoints of
individuals are necessary and desirable (Rowe & Wright, 1999).

3.1.3 Justification of Delphi Method for Current Study

All of the criticisms and methodological issues associated with the use of the
Delphi Method, as described in the previous section, were considered and taken
into account during the development and implementation of the current study.
Linstone and Turoff (1975) established a set of criteria that could be used to
determine whether the Delphi technique is appropriate for use in a particular
research project. These criteria were:
when the issue to be examined is not easily assessed by specific analytical
processes but may be more suited to a subjective consideration,
when the subject group is composed of individuals from a variety of
different locations, backgrounds and experiences,
when the number of participants is large enough to mean that holding
meetings with all members is impractical,
when there is potential for serious disagreement between different members
of the subject group, and this disagreement would result in communication
within the group being compromised, and
when the potential for any sub-set of the subject group to monopolise or
dominate the data collection is large enough to risk the validity of the
results.

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Each of these issues was individually examined and reviewed by the researcher
prior to the commencement of the project. The aims of establishing a consensus
position from a group of disability support workers located across the large
demographic and geographic area of NSW on the subjective issues of ageing with
an intellectual disability would appear to specifically fit the criteria set by Linstone
and Turoff (1975). It was considered that the goals of the current study met all of
the nominated criteria, and that the Delphi Method would therefore be an
appropriate methodology for addressing the research question.

Adler and Ziglio (1996) argued that, after deciding upon using the Delphi Method,
there were three key questions that the research must be consider and answer.
They proposed that the researcher must evaluate:
With due consideration to the issue at hand, what is the most appropriate
form of communication within the groups of participants?
Who are the actual experts in relation to this issue and how accessible are
they?
Are there any alternative research techniques available and, if so, why
would the researcher expect the application of the Delphi to provide better
results than the other options?

Adler and Ziglio (1996) concluded that, if the researcher does not appropriately
answer these three key questions prior to commencing the study, the Delphi
Method may be inappropriate and the actual research potentially invalid. These
three key issues were evaluated by the researcher prior to the project commencing.
They also continued to be considered during the development of the current study
as a means of ensuring that the Delphi Method was appropriate and relevant. As
discussed earlier in section 3.1 Methodology, it was not believed that there was an
alternative research technique which would provide the same information as
efficiently or effectively as the Delphi Method. The form of communication for the
participants was designed prior to the commencement of the study and is
described in greater detail in section 3.5 Data Collection and Management. The

131
process for determining the composition of the expert panel was considered prior
to the research beginning, and is detailed in section 3.3.3 Recruitment of Sample.

Delbecq, Van de Ven and Gustafson (1975) proposed three elements that were
essential if a Delphi Method study was to be successful. The three criteria were that
there was sufficient time to complete the study, the study’s participants were
literate and there was a high level of interest in actually participating. It was
concluded that the Delphi technique should not be used if there were less than
forty-five days available to complete the study, when the proposed participants
had limited literacy, or when the experts were not sufficiently interested in the
purpose of the research. After evaluation it was concluded that the present research
project was not limited by any of the above considerations. The timeframe for the
current study was not restricted and could extend over more than a year if so
required. The participants in the study would be sought through self-nomination
which would mitigate the concerns regarding both sufficient interest and literacy.
The process for determining the panel is described in detail in section 3.3.3
Recruitment of Sample.

It is believed that the previously mentioned strengths and inherent properties of

the Delphi Method demonstrate its particular applicability to the current research
project. In order to gain the widest possible geographic representation while still
maintaining each individual participant’s ability for direct involvement, the Delphi
Method was deemed the most suitable research technique for the study. An
analysis and review of the proposed research goals and methodology did not find
any inherent limitations that would preclude the use of the Delphi Method. As
noted in section 1.6 Key Assumption, the current research had one key assumption.
The researcher has assumed that the issue of ageing and intellectual disability was
considered to be equally critical across all regions and all non-government
disability support organisations in rural New South Wales. This assumption
underpins the research methodology and sampling processes that were utilised
within the study.

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3.2 Ethical Issues
Formal ethics approval for this project was granted by the University of New
England’s Human Research Ethics Committee (see Appendix 9) prior to the
commencement of both the pilot study, as described in section 3.4.2 Pilot Study, and
the main project. A second ethics application was approved for the final stage of
the research (see Appendix 9). As the primary researcher is employed in a
management position with The Ascent Group, one of the identified disability
organisations operating in New South Wales (NSW), an intermediary research
assistant was used in both the pilot and main study to avoid any potential concerns
of collusion or coercion. A formal Confidentiality Agreement was signed between
the researcher and the intermediary to prevent the inappropriate use of any
information (see Appendix 5). The use of an intermediary meant that the researcher
did not have direct contact with any participants employed by The Ascent Group
and was never aware of the identities of these individuals. All contact with these
participants was done through the intermediary who provided participants with
the surveys and paperwork in hard copy. A separate set of questionnaires and
information was provided to participants from The Ascent Group to reflect this
slight difference in methodology (see Appendix 3 and Appendix 4).

3.3 Setting, Sample and Recruitment

3.3.1 Population Demographics of NSW
As of 30 March 2010, the population of NSW was estimated to be 7.13 million (m)
(Australian Bureau of Statistics, 2010). The rural and remote areas of NSW had a
population of 1.6m (Australian Bureau of Statistics, 2009). These figures indicated
that approximately 22.5 percent of the population reside in rural and regional areas
outside the four main cities of Sydney, Newcastle, Wollongong and Gosford. A
more comprehensive description of the study setting was provided in section 1.6
The Research Setting.

3.3.2 NSW Government Structure for Disability Support Services

As stated in earlier chapters, the Department of Ageing, Disability and Home Care
(DADHC) is the New South Wales (NSW) State Government body responsible for

133
the funding and delivery of services to people with disabilities. DADHC
administers the NSW Disability Services Act (1993), the Home Care Service Act (1988)
and the 1973 Youth and Community Services Act. DADHC funds over 900 non-
government and local government organisations across metropolitan and rural
areas to provide services and support to the target groups of older people, people
with disabilities and their carers (Department of Ageing, Disability and Home
Care, 2008a). DADHC delivers services in sixteen Local Planning Areas (LPAs), as
seen in the list below. These LPAs are:
1. Cumberland/Prospect;
2. Nepean;
3. Northern Sydney;
4. Inner West;
5. South East Sydney;
6. South West Sydney;
7. Central Coast;
8. Hunter;
9. Far North Coast;
10. Mid North Coast;
11. New England/North West;
12. Illawarra;
13. Southern Highlands;
14. Central West;
15. Orana/Far West; and
16. Riverina/Murray (Department of Ageing, Disability and Home Care,
2008a).

The first six LPAs cover predominantly metropolitan regions associated with
Sydney. The remaining ten LPAs cover predominantly regional and rural districts;
however, the city of Wollongong is located in the Illawarra area, Newcastle is in the
Hunter area and Gosford is in the Central Coast area. The following map, Figure 3,
provides a pictorial representation of the DADHC regions.

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 Figure 3 – Map of DADHC Regions
(Source: Local Government and Shires Association, 2008)

3.3.3 Recruitment of Sample

The purpose of the current study was to gain the individual perspective of
disability workers within rural areas of New South Wales (NSW) regarding the
issues of ageing and intellectual disability. In order to achieve a suitably
representative sample an approach was made to the chair of Disability
Professionals NSW (DPNSW), a Not-For-Profit (NFP) membership association that
represents disability workers in the state. The chair of DPNSW was asked to
identify key disability support organisations from each Department of Ageing,
Disability and Home Care (DADHC) rural Local Planning Area (LPA). As part of
this process, the chair of DPNSW was asked to select organisations that would
provide a diverse representation of disability organisations with respect to their

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overall size and range of programs delivered. The following fifteen key
organisations and the DADHC regions they cover, were nominated by the chair of
DPNSW:
Aces (Central and Mid North Coast),
Challenge Disability Services (New England/North West and Hunter),
Coffs Harbour Support Services (Mid North Coast),
GlenRay Industries (Central West),
Gunnedah Support Services (New England/North West),
Hunter Integrated Care (Hunter and Central Coast),
Kurrajong Waratah (Riverina/Murray),
Lambing Flats Enterprises (Riverina/Murray),
Mai-Wel (Hunter),
Multi-Task (Mid North and Far North Coast),
On-Focus (Mid North Coast and Far North Coast),
Orange Community Resource Centre (Central West),
The Ascent Group (New England/North West),
Tulgeen Group (Southern Highlands), and
WestHaven (Orana/Far West).

While it was not feasible to ensure that all rural areas of NSW were equally
represented, it was considered that the final list of service organisations provided
an adequate and appropriate coverage of most areas. There were a number of
locations and disability providers which, while geographically located within
NSW, were not recommended by DPSNW for the study. Initial discussions with
DPNSW indicated that services situated in towns on the borders of NSW, such as
Broken Hill and Albury, often accessed health services and training opportunities
from neighbouring states. As such, the inclusion of these services would not
necessarily accurately reflect the situation within NSW and were therefore not
included.

Similarly, a number of providers that were situated in close proximity to the four
major cities of Sydney, Newcastle, Wollongong and Gosford were considered by

136
DPNSW as not being necessarily representative of rural and regional NSW. The
rationale for the inclusion of non-metropolitan coastal areas was that, while they
are often not popularly viewed as being ‘rural’, they fit the regional definition
within both the Rural, Remote and Metropolitan Areas (RRMA) and Australian
Standard Geographical Classification Remoteness Areas (ASGC-RA) classification
systems (Australian Institute of Health and Welfare, 2008b; Department of Health
and Ageing, 2007a). Details of the RRMA and ASGC-RA are provided in section 1.6
The Research Setting. It was considered that these coastal regions experience many
of the same issues associated with distance and isolation as other rural areas.

The Chief Executive Officer (CEO) of each of the fifteen nominated services was
approached by the researcher and asked for assistance to identify volunteers to
participate in the study. The target participants were direct care staff as it was felt
that this group best met the criteria of being knowledgeable individuals on the
desired research topic. Line managers who were still involved in the day to day
service delivery were also deemed appropriate potential panel members. The CEOs
distributed the survey to all staff who met these criteria. They were requested to
seek a minimum of one and a maximum of five participants from their organisation
who worked with people with an intellectual disability who were considered to be
experiencing ageing related issues. The maximum number of participants was set
prior to commencing the research in order to prevent any single organisation
having a disproportionate influence on the overall sample. The CEOs distributed
the researcher’s contact details, with potential participants advised to use this to
directly indicate their interest in the project.

3.4 Survey Instruments

The initial questionnaire form (see Appendix 2) was developed by the researcher on
the basis of the literature review and then revised following feedback received
through a pilot study (see section 3.4.2 Pilot Study). As detailed in section 1.3
Theoretical Framework for the Current Study, the entire project and questionnaires
were developed in line with a social constructionist framework. The belief that both
individual issues and the wider society impact upon the life experiences of a

137
person with an intellectual disability was a key component of developing the initial
questionnaire. The concept of successful ageing for people with intellectual
disabilities (see section 2.4 Successful Ageing) and how issues associated with ageing
affect their quality of life (see section 2.5.2 Quality of Life for People with an Intellectual
Disability) were also paramount in the development of the initial questions
designed to start the process of identifying changes in rural service delivery that
may achieve a better outcome for the individual. In line with the Delphi model, the
information and responses from each round of questionnaires determined the
format of the following round. This process is described in greater detail below.

Personal information was sought from the individual participants regarding their
age, gender, a contact address, training, work history and their current job role (see
Appendix 2). No individuals, other than the researcher and the doctoral supervisory
committee (if requested) had or have access to any of the participants’ email
addresses or personal information. All the participants’ results were to be e-mailed
or posted back to the researcher’s university addresses and imported into a
Microsoft Excel (Office Professional Plus 2007 version) spreadsheet for tabulation.

3.4.1 The Rounds of a Delphi Method Study

A Delphi project normally involves at least three rounds of responses from the
participants (Ludwig, 1997). Within a classic Delphi study, the rounds of study
continue until either a pre-determined consensus level is achieved or when no new
information is being obtained. The first stage is a questionnaire that is composed of
open-ended questions based around generic issues within the desired field. The
second round questionnaire is based upon the responses gained from the
participants’ first round answers. The researcher provides the participants with a
collation of all unique responses as provided in the first round, with the
participants then required to review these items for relevance and to note any
omissions. The researcher presents all of the issues identified in the first two
questionnaires in a third questionnaire, with the participants required to use a
Likert-type rating system to indicate the relative importance of each item (Hsu &

138
Sandford, 2007). Any items on which the Panel fails to reach consensus are then
returned to the participants for re-evaluation until a group position is reached.

The current study utilised this construct of the Delphi Method to examine the
views of direct care workers regarding the ageing of people with intellectual
disabilities. The first round questionnaire was developed through a review of the
literature and was composed of six generic questions (see Appendix 2 and also
section 3.4.2 Pilot Study). These six questions were open-ended and designed to
provide the participants with an opportunity to contribute as much information as
they believed was relevant and pertinent. The rounds were designed to continue
until consensus was reached. However, another stage to the classic Delphi model
was added in the current study. The last component of the research involved the
participants each being provided with the final lists of prioritised issues for each of
the six questions. They were asked to indicate their agreement with the final
ranking of the items through the use of a five point Likert scale.

In order to assist the researcher to establish whether there were any key themes
emerging from the individual answers a thematic analysis was conducted upon the
responses for each of the six questions. As previously detailed in section 1.3
Theoretical Framework for the Current Study, the theoretical framework for this study
is based upon social constructionism. The work of Charmaz (1990, 2006) was
utilised to establish three guiding principles for the thematic analysis from a social
constructionist perspective. These principles were

Why do the participants in the study think/feel the way they do about the
issue?

Under what conditions do the participants think/feel the way they do?

What consequences do the participants perceive as potentially occurring?

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The thematic analysis was conducted separately on each of the six questions and
was composed of six stages. These six stages were

1. All of the responses were read through to establish a general sense of

meaning.

2. The responses were re-read to clarify and confirm the overall meaning of
each item.

3. Where applicable, a meaning unit was identified for each separate item. In
the context of the current study, a meaning unit was considered to be any
string of text that encapsulated a single coherent concept.

4. Each meaning unit was then considered and reviewed with respect to the
other meaning units to ensure that a complete change of subject had
occurred.

5. The items within each question were then re-assessed to identify any
recurring meaning units. The recurring meaning units were then grouped
together in a matrix format.

6. A theme word or statement was then generated for each meaning unit to
state the underpinning and inherent shared meaning for the grouped items.
(Boyatzis, 1998)

Every item in each question was not categorised into a meaning unit as some issues
were not considered to fit into a larger theme. At this stage of the project, the
participants had not been given an opportunity to either review or rate the
importance of each item. The purpose of the thematic analysis was not to generate
quantitative data with respect to presence, frequency or intensity. It was instead

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designed simply to assist the researcher to identify any concepts that recurred
throughout the lists of items for additional inspection and analysis.

Any specified themes are detailed in the following review of the responses for each
question. The participants were not made aware of this process of theme
identification at any time during the research. Prior to the second round of the
study, all of the responses were sorted in alphabetical order to remove any
perceived bias towards particular issues or themes.

3.4.2 Pilot Study

A pilot study was conducted by the researcher to assess the suitability of the
Delphi Model and to provide feedback on the content and format of the initial
survey form. The pilot study involved the participation of five volunteers who
worked for a rural disability service provider, The Ascent Group. These five
individuals all worked with people ageing with an intellectual disability. They
were then not permitted to participate in the main study. The pilot study involved
the use of an intermediary research assistant to ensure no perceptions of coercion
or collusion, with the researcher unaware of the identity of the participants. An
expression of interest to participate was provided to all employees within the Day
Services section of The Ascent Group and they were asked to directly contact the
research assistant to indicate their consent.

The initial stage of the Delphi was composed of a questionnaire with six generic
open-ended questions derived from the literature review. These questions were

1. What do you think are the main issues or problems that a person with an
intellectual disability will face as they age?

2. What are the main signs of ageing that you have seen in people with intellectual
disabilities (i.e. physical health issues, social impacts, emotional issues, mental
health issues)?

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 3. From an individual staff perspective, what are the main issues you experience in
providing support to someone with an intellectual disability who is ageing?

4. What do you think are the main issues facing the families and friends (including co-
residents) of someone with an intellectual disability who is ageing?

5. What do you think are the main issues or problems facing a rural organisation that
provides support to someone with an intellectual disability who is ageing?

6. What do you think are the highest priorities in training for staff who assist
individuals with an intellectual disability who are ageing?

The research assistant allocated an identifying code number (from one to five) to
each of the participants and kept this code in a locked filing cabinet. The researcher
provided the research assistant with five numbered packages, which contained the
information sheet, consent form and survey. The research assistant then passed on
the appropriately numbered package to each of the participants. The consent form
was completed by the participants and was then maintained by the research
assistant in a locked filing cabinet. The completed surveys were returned to the
research assistant in the numbered packages. The research assistant then provided
the researcher with the completed surveys.

The research assistant continued to act as the intermediary for the following stages
of the pilot Delphi study. The numbering system allowed the researcher to identify
if any participant had not returned any surveys, whilst still maintaining their
anonymity. This situation occurred in stage two when the research assistant was
advised that participant number three had not returned the survey in time. The
research assistant then checked the code sheet to identify this participant and
approached that person directly to request return of the survey.

Following each stage of the pilot study, the participants were asked to identify any
areas of concern, or suggestions for improvement. As a consequence of this

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feedback, the number of rating options on the Likert Scale was increased from the
original five points to seven. This alteration was made as participant feedback
indicated the five point scale did not always provide sufficient levels of
differentiation for the items. A new seven point scale was provided to participants
in the pilot. They trialled this option and responded unanimously that it was
preferred to the five point scale. The participants did indicate that a five point scale
would be desirable for questions that had less than ten responses but the longer
lists of issues meant that the seven point scale would be more appropriate.

The six questions used in stage one were considered by all the participants in the
pilot study as being appropriate, relevant and sufficiently open-ended. Therefore, it
was believed that the questions did not require any modification prior to inclusion
in the main study.

3.5 Data Collection and Management

3.5.1 Contact between Researcher and Participants
The researcher’s university email and postal addresses were distributed by the
fifteen CEOs as the means for interested direct care workers to indicate their
willingness to participate. The participants were asked to make contact with the
researcher directly through either of these two options. Communication between
the researcher and the participants took place through electronic correspondence or
Australia Post mail services. The only exception to this process occurred with the
staff employed by The Ascent Group who received their information and
responded to the surveys through an intermediary to minimise any perceptions of
collusion or coercion (see section 3.2 Ethical Issues). Participants who did not have a
personal email address had the information mailed directly to their nominated
address via Australia Post. Stamped self-addressed envelopes were provided for
the return of paperwork. The data collection process used in the main study is
outlined in Figure 4. A more detailed description of the procedures follows.

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 Figure 4 – Delphi Study Process

3.5.2 Data Collection Procedures

An introductory email and a copy of the information packages and survey were
sent to the Chief Executive Officers of the fifteen disability support agencies. Each
Chief Executive Officer was asked to facilitate the distribution of the study to
potential participants within their organisation. Of the fifteen disability
organisations approached, thirteen Chief Executive Officers responded directly to
the researcher and agreed to distribute the information packages to staff. The two

144
agencies that did not respond to the initial email, the Tulgeen Group and Orange
Community Resource Centre, were telephoned directly by the researcher. While
they agreed to distribute the survey, there was ultimately no participation from
staff employed by these two organisations. Coffs Harbour Support Services did
respond positively to the initial email, but no staff decided to participate in the
study.

The study was introduced to participants through the use of electronic mail (email)
and also paper copies through Australia Post. The Chief Executive Officers of the
participating disability agencies distributed the information packages to their staff.
Every participant in the Delphi Panel was supplied with a consent form,
information that outlined the study and the proposed methodologies to be used
(see Appendix 1), as well as an indication of the approximate timeframes involved
in participation. The participants were also provided with an introductory letter
and the first round questionnaire (see Appendix 2). The concept of using an on-line
Delphi system, in which all participants completed the survey by accessing a web-
site, was considered but ultimately rejected, as not all disability workers could be
guaranteed to have easy access to a computer with internet access. Initial contact
confirmed this situation with a number of participants asking for all information to
be provided on paper via normal mail services.

3.5.2.1 First Round of the Delphi

The first stage of the research project involved an initial questionnaire (see
Appendix 2) being sent to each participant. They were instructed to return their
responses either via email or Australia Post to a designated university address.
Stamped self-addressed envelopes were provided to those participants who
requested a paper copy. A number of participants chose to remain anonymous and
not to provide their direct contact details with their responses being returned by
the Chief Executive Officer of their company. The instructions for returning the
questionnaires were not followed by all participants with many questionnaires
being returned to the researcher’s workplace and, in two circumstances, his
residential address. Many participants were familiar with the researcher from

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previous contact in non-research settings and therefore inadvertently used these
other mechanisms for returning the surveys. It was not believed that this deviation
from the provided instructions affected the reliability of the data.

3.5.2.2 Second Round of the Delphi

The responses from the first round questionnaire were compiled into an
aggregated list for each of the six questions by the researcher. Identical or largely
similar responses were only included once. These lists were presented to the
participants as the second questionnaire (see Appendix 6) with an instruction to
review the responses for any items of disagreement or omissions. The participants
were advised that the items were not placed in order of importance, and that the
researcher had listed them alphabetically to prevent any perception of bias. The
lists were sent out to the participants through their preferred mode of delivery. The
majority were distributed electronically via the researcher’s university email
address. Surveys were also provided in hard copy to either their employing
organisation or a specific home address. Participants were asked to respond either
by email or Australia Post. Stamped self-addressed envelopes were provided on
request for paper-based surveys. Three participants had a total of eight additional
recommended items for inclusion with no objections or disagreements to any of the
first round issues identified.

3.5.2.3 Third Round of the Delphi

The additional responses to the second questionnaire were reviewed and compiled
into a final list of key issue statements for each of the six questions. These lists of
the key statements formed the basis of the third questionnaire. The third
questionnaire was distributed (see Appendix 7) with instructions requesting that
each participant rate the individual importance of each statement on a seven point
Likert scale. The return mechanism for the third round remained the same as for
the previous questionnaires. All returned surveys were coded with the importance
and level of group consensus for each item being calculated. A description of the
rationale underpinning these decisions is provided in section 3.6 Determinants of
Consensus and Importance. Any items that did not meet the pre-determined level of

146
consensus would then be re-submitted to the group for further consideration. Each
participant would be asked to again rate it on the seven point scale. This process of
review for individual items would continue until either consensus was reached or
it was apparent that there was no likelihood of the group achieving a position of
agreement.

3.5.2.4 Final Stage of the Research

The final stage of the Delphi involved the participants being sent a prioritised list of
responses based upon the collated scores from the third round of the survey. The
participants were asked to indicate their level of agreement, using a five point
Likert scale, with the final prioritised listing of issues for each of the six questions
(see Appendix 8). This step was introduced to provide a checking mechanism for the
degree of consensus in the group. The prioritised list of responses gained through
the Delphi study was also sent to the Chief Executive Officers of all fifteen
organisations that had been originally approached to participate in the study. As
with the Delphi panellists, the Chief Executive Officers were asked to indicate their
level of agreement with the final prioritised list for each of the six questions using
the same five point Likert scale. This final stage of the study was not a formal part
of the Delphi rounds but was included to examine whether senior managers were
in agreement with the views of their direct care workers.

3.5.3 Duration of the Data Collection

The pilot study commenced on 21 November 2007 and concluded on the 5 March
2008. The Delphi component of the main project commenced on 13 May 2008 with
an email being sent to the Chief Executive Officers of the disability support
organisations. Initial contact with participants commenced on 14 May, and the first
round of the survey started being disseminated the same day. Surveys continued to
be provided to all interested participants for a period of one month. One of the
significant difficulties faced by the researcher throughout the survey was the delay
in receiving participants’ responses. As a consequence of the distance between both
the researcher and the study participants all communication occurred through
electrical or written forms. This situation meant that a considerable amount of time

147
was spent following up with participants who had not responded within the
nominated timeframes. The last stage of the project was finalised on 17 July 2009,
representing a total duration of data collection of fourteen months.

3.6 Determinants of Consensus and Importance

A comprehensive analysis of the data is presented in the Results section in Chapter
Four. However, there was one important aspect of the analysis that had to be
determined prior to the commencement of the actual study. This issue related to
the concepts of consensus and importance and how these two factors would be
determined.

The main statistical processes used in Delphi studies are based on measures of
central tendency such as mean, median and mode, or levels of dispersion such as
standard deviation (Hsu & Sandford, 2007). One source of criticism for the Delphi
Method is that there is no standard measure or cut-off point that definitively
determines when consensus is reached by the panel for an item (Crisp et al, 1997).
There are a number of different methodologies that have been proposed to
determine whether the group has reached consensus on individual issues and also
whether the item is considered important.

A measure of consensus, called the coefficient of variation, was first proposed for
use in Delphi studies by English and Keran (1976). The coefficient of variation is
calculated by dividing the standard deviation for each issue by its mean. An item is
considered to have reached consensus if the coefficient of variation value is
between 0 and 0.5 (English & Keran, 1976). Other researchers, such as Hill and
Fowles (1975), argued that the group had reached consensus on an issue if the
standard deviation for that item was less than or equal to 1.0. Schiebe, Skutsch and
Schofer (1975) considered consensus had been reached when a pre-determined
proportion of votes fell into a prescribed range of scores. However, no set figure
either for the proportion of votes or prescribed range of scores was clearly
established.

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It was proposed that consensus could be considered to be achieved when 80
percent of the scores fall within three consecutive ratings on a seven point Likert
scale (Hsu & Sandford, 2007). A different cut-off mark was nominated by
Alexandrov et al (1996), who defined consensus as when 67 percent of votes fell in
one of two categories, such as a yes-no delineation. Another option suggested that
consensus required a figure of 70 percent of scores to fall within one rating (Hsu &
Sandford, 2007). Alternatively, it was proposed that a basis of at least 51 percent
responding to any given response category could be used to determine consensus
(McKenna, 1989).

Determining whether an item is accepted by the group as being ‘important’ is

usually based upon its mean, median or mode scores (Hasson, Keeney & McKenna,
2000). The use of the mean score is considered appropriate by some researchers
(Murray & Jarman, 1987), while other studies promote the median as being a more
reliable measure (Hill & Fowles, 1975). It has also been argued that using the mode
is appropriate as there is a possibility that an item may see the participant group
presenting two separate and distinctly different views with the scores clustered
around these two points. In this situation, either or both the mean and median
scores may not truly provide a correct representation of the group’s thoughts (Hsu
& Sandford, 2007).

It was decided by the researcher that the mean, median, mode, standard deviation
and the coefficient of variation for each item would be calculated following the
third round of the current study. It was determined that a number of different
measures would be examined for each item in order to ensure the greatest possible
reliability and validity of the results. Consensus would be considered to be attained
if the coefficient of variation fell between 0 and 0.5, and if the standard deviation
for the item was equal to 1.0 or less. If both of the scores were exceeded, consensus
would not be deemed to have been reached. For any issue that failed to meet one of
the two criteria, the range of scores for that item would be further analysed to
establish if 80 percent of the participants’ scores fell within three consecutive

149
scores. If the coefficient of variation exceeded 0.5, or the standard deviation
exceeded 1.0, and less than 80 percent of the ratings were within three consecutive
scores, it would be considered that consensus was not established for that item.
Any items on which the Panel did not reach consensus would be returned to the
participants for further consideration.

It was further determined that an item would be considered ‘important’ by the

Panel if the mean score was greater than 4.5, indicating that scores were closer to
important than the neutral position. However, each item’s median and mode scores
would also need to equal or be greater than a score of 5 for importance to be
attributed. If any item’s mean score was equal to or less than 4.5, or if the median
or mode scores were below 5, the data for that item would be examined to see if 80
percent of ratings were 5 or greater. If the mean was below 4.5, or the median or
mode scores for any item were below 5, and less than 80 percent of participants
rated the item as ‘important’ or greater, the issue would be considered to be
unimportant to the Panel. This rating of unimportant would be tested by returning
any identified items back to the participants for review.

When consensus was not reached on an item in a Delphi study, some researchers
chose to provide each participant with the overall group’s mean score or inter-
quartile range for that question (Wiersma & Jurs, 2005). It was decided not to
follow this protocol in the current study. The reason for not providing this
information was to ensure that there was no pressure, inadvertent or otherwise,
upon the participants to conform to the group view. Instead, any items that did not
reach consensus would be returned to all members of the panel, and they would be
asked simply to reconsider their initial response, then re-rate and return it.

3.7 Limitations
There were three methodological limitations identified within the current study.
These limitations must be considered when examining the results and the
applicability of the findings to the wider community. The first of the limitations

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relates to the suitable coverage of disability workers from across the state of New
South Wales (NSW). Three of the initial organisations approached by the
researcher, The Tulgeen Group, Orange Community Resource Centre and Coffs
Harbour Support Services did not provide any participants to the study. The
Orange Community Resource Centre is located within the Central West Local
Planning Area (LPA). This LPA is also serviced by GlenRay Industries, which did
provide participants for the study. Coffs Harbour Support Services is located
within the North Coast region that is also serviced by On-Focus. There were
participants from On-Focus within the study and, as such, it was considered both
the Central West and North Coast planning areas were represented.

However, no alternative organisation to The Tulgeen Group was nominated by the

Chair of DPNSW within the Southern Highlands LPA, and this area was ultimately
not represented in the Delphi survey. Time restraints did not allow for another
organisation to be sought out in that specific LPA. In total, nine of the ten rural and
regional LPAs were represented on the Delphi Panel. The Chief Executive Officer
of The Tulgeen Group did complete the final component of the study aimed at
senior managers so some representation from the Southern Highlands region did
occur in the last stage of the research.

The second methodological limitation pertains to the use of staff from non-
government organisations. A decision was made to focus purely on non-
government disability services with no participation from direct care staff who
work for the NSW Department of Ageing, Disability and Home Care (DADHC).
This choice was deliberate as there are significant differences in how government
and non-government disability workers were both employed and funded. DADHC
disability staff were employed under a different award and have different
induction processes and ongoing training. It was felt inappropriate to include both
government and non-government staff in the Delphi study as it was considered
that the issues they faced would not necessarily be identical. However, this
decision does mean that the results of the Delphi study cannot necessarily be
generalised to the staff employed through the government body DADHC.

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The third limitation of the current study was the use of a convenience sample. In
order to reduce the possibility of bias, it was recommended that probability
sampling, a process in which every person has an equal likelihood of being
surveyed, should be used. Probability sampling is considered the most suitable
methodology as it minimises the potential for sampling error or bias (Beanland et
al, 1999). With the current study, the purpose was to gain the input and views of a
range of participants across rural NSW and, as such, a probability sample was
simply not logistically possible. A convenience sample was the only technique that
could achieve the desired goal. However, the use of a convenience sample did
mean that the motives and perceptions of those people who chose to respond to the
survey may have differed from the individuals who did not wish to participate.
This potential difference leaves open the possibility that the sample was, therefore,
biased (Beanland et al, 1999).

This issue is highlighted by the demographic information of the Panel members, as

described in greater detail in section 4.1 Demographic Characteristics of Study
Participants. The participants as a group had a considerably higher level of prior
training and education than the limited demographic data of the disability sector
would suggest. There were a number of reasons for this disparity (see section 5.1.1
Demographic Issues in Current Study); however, it remains a possibility that the
participants in this Delphi Panel may not accurately reflect the wider disability
workforce sector.

It is also worth recognising that a key component of a Delphi study is the use of
appropriate ‘experts’ who are interested in participating in the research (Adler &
Ziglio, 1996; Delbecq, Van de Ven & Gustafson, 1975). This issue in itself limits the
potential participant base. The Panel in a Delphi study must be composed of those
individuals who are sufficiently motivated and interested in the issue of ageing and
disability to participate in the study. There may be ‘experts’ within the field who
were not willing to become involved in the study due to the considerable time
commitments for participants involved in this type of research. This factor is

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inherent to all Delphi studies and determines the selection process for potential
panellists. It is not believed that the selection process for participants in the current
study was biased in its choice of experts as the opportunity to participate was
offered through the Chief Executive Officer to all staff members of the nominated
rural disability organisations who worked with people ageing with an intellectual
disability. The decision whether each person could commit sufficient time and had
sufficient interest in the topic was left to each individual to determine.

3.8 Conclusion
Chapter Three described the Delphi Method, its strengths and weaknesses and its
suitability for the current research project. The selection of the Delphi Panel was
discussed, as was the methodology and questionnaires used in the study. The
chapter described the population group, how the sample was obtained for the
survey and the treatment of the data. The use of a pilot study and its impact upon
the final instrumentation was discussed. The procedures used within the main
study were detailed, along with the methodological limitations. The next section,
Chapter Four, provides an overview of the demographics of the Delphi
participants and a summary of the findings from each round of the study.

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 Chapter Four - Results

Introduction
The chapter provides a summary of the results from each stage of the Delphi study
as well as an additional stage in which the leaders of the disability organisations
responded to the prioritised lists of items gained from the research. The findings
are presented, clearly establishing new key knowledge based upon the prioritised
issues identified by the participants.

The researcher trialled a number of different options and styles for presenting the
data. In order to increase the readability of this section, a large proportion of the
tabulated data was initially included as an appendix. However, it was considered
that this approach substantially interrupted the flow of information, with the
reader constantly referring back to the relevant appendix for specific details. It was
decided to present all the relevant data in the form of tables throughout this
section. It is acknowledged that the repeated use of tables may not be ideal for the
reader; however, it was seen to be a more accessible format.

4.1 Demographic Characteristics of Study Participants

There were a total of thirty-one participants in the first stage of the study. While the
figure of thirty-one in the Delphi Panel is slightly higher than the recommended
number of participants by Ludwig (1997) and Adler and Ziglio (1996), it still fell
within the range of ten to fifty as recommended by Linstone and Turoff (1975). It
was considered that thirty-one was not an excessively large Panel and would not
present any major logistical problems or impediments to the survey being
completed in a timely and efficient manner.

A large proportion of the participants (n=23/31) identified themselves as being

primarily direct care workers, with the remaining eight classifying themselves as
line managers who still performed direct care work. The Delphi Panel had an
average age of 47 years (standard deviation = 9.9), with a range from 22 to 69 years
(see Figure 5).

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 Figure 5 – Age of Panel Members

The average length of time spent working with people with disabilities was 10.0
years (standard deviation = 6.8), with the range of employment experience in the
field varying from six months to over thirty years.

Two thirds (67.8 percent) of the Delphi Panel have worked with people with
disabilities for a minimum of six years. Figure 6 provides a description of the years
of experience of the Panel members in working with people with disabilities.

Figure 6 – Years of Experience Working with People with Disabilities

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The participants identified their highest level of training and education at stages
including secondary school, Certificate III, Certificate IV, diploma, advanced
diploma, university degree and postgraduate qualification. Figure 7 displays the
highest education level achieved by the participants. Of the Delphi participants,
96.8 percent had completed a post-school qualification in a disability related area.

Figure 7 – Highest Education Level Achieved

4.2 First Round of the Delphi

A total of thirty-one participants agreed to participate in the study and they all
completed the first stage of the Delphi. The participants were asked to list as many
answers as they felt appropriate for each of the six initial generic questions (see
section 3.4.2 Pilot Study). The six questions were open-ended, allowing the
participants to provide as many different responses as they felt appropriate. All of
the participants’ survey results were collated with any identical or predominantly
similar responses removed. The actual wording used by the participants in their
answers was maintained. In situations in which predominantly similar responses
were combined, the researcher used the wording that was considered to best
represent the jointly nominated issue.

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4.2.1 Issues Identified for Question One
There were a total of twenty-five different issues identified for the first question
“What do you think are the main issues or problems that a person with an intellectual
disability will face as they age?”All twenty-five of the participants’ identified issues
are presented in alphabetical order in Table 1. The thematic analysis of these
responses revealed a number of specific concepts within the identified issues.
These themes included issues relating to:

Access to services: The panel identified a large number of issues relating to a

lack of access to appropriate services. The participants’ responses
commented specifically on problems such as “Access to specialist services such
as gerontology and ACAT teams”, “Having appropriate housing to allow them to
age in place safely”, “Being able to retire and access appropriate recreation and
leisure activities (day programs etc)”, “Accessing appropriate equipment and aids”,
“Accessing appropriate transport”, “Doctors (and allied health staff) not
prioritising medical attention for this group” and “Having appropriate support
services to allow them to age in place safely”.

Training needs: The participants noted a number of issues relating either to

a lack of knowledge or the need for appropriate training by both direct care
staff and the wider community in issues relating to ageing with an
intellectual disability. This theme included responses such as “Having
appropriately trained and qualified support staff”, “Confusion by staff and medical
practitioners about what is ageing versus disability issues”, “Lack of understanding
of disabilities within mainstream aged care services” and “General lack of
understanding about the ageing process by staff”.

Individual health: The health of people with intellectual disabilities was

identified by participants as one of the main problem areas associated with
ageing. These individual health items included “Decreased communication
skills”, “Specific medical conditions such as early on-set dementia, osteoporosis
etc”, “Hygiene (including managing incontinence)”, “Decreased physical skills”

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 and “Physical deterioration (hearing and sight) and emotional changes
(depression)”.

Funding: There were a number of different issues identified that had an

underlying focus upon the perceived inadequacy of the funding provided
by government to support people with intellectual disabilities as they age.
Examples of these issues includes “Increasing support needs but no increased
support (due to no funding increases)” and “Pension not meeting increased
financial needs”.

Table 1 – Issues Identified for Question One

Issue Identified
Access to specialist services such as gerontology and ACAT teams
Accessing appropriate equipment and aids
Accessing appropriate transport
Being able to retire and access appropriate recreation and leisure activities (day
programs etc)
Concerns about “what’s next” in their life
Confusion by staff and medical practitioners about what is ageing versus disability
issues
Correct diagnosis of issues by medical practitioners including mental health
Decrease in family support as immediate family is often also ageing (and dying
themselves)
Decreased communication skills
Decreased physical ability
Doctors (and allied health staff) not prioritising medical attention for this group
General lack of understanding about the ageing process by staff
Getting used to new staff
Having appropriate housing to allow them to age in place safely
Having appropriate support services to allow them to age in place safely
Having appropriately trained and qualified support staff
Having to leave a house they have lived in for many years (and decades)
Hygiene (including managing incontinence)
Increasing support needs but no increased support (due to no funding increases)
Lack of appropriate facilities
Lack of understanding of disabilities within mainstream aged care services
Pension not meeting increased financial needs
Physical deterioration (hearing and sight) and emotional changes (depression)
Placement into mainstream aged care facilities that have no understanding of disability
Specific medical conditions such as early on-set dementia, osteoporosis etc

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4.2.2 Issues Identified for Question Two
There were a total of thirty-two different issues identified for the second question
“What are the main signs of ageing that you have seen in people with intellectual
disabilities (i.e. physical health issues, social impacts, emotional issues, mental health
issues)?”All thirty-two of the participants’ identified issues are presented in
alphabetical order in Table 2. The thematic analysis of these responses revealed a
number of key concepts within the identified issues. These themes included issues
relating to:

Mental functioning: A number of the identified signs of ageing in people

with intellectual disability related to declines or changes in the mental
functioning of the individual. These signs included both generic issues such
as “Deterioration in mental abilities” and “Mental health issues such as depression
and dementia”, as well as more specific problems including “Loss of memory”
and “Increase in inappropriate and/or aggressive behaviours”.

Physical issues: The participants in the study identified a series of physical

issues associated with ageing in the cohort of people they support. Issues
such as “Decreased mobility”, “Incontinence (bladder and bowel)”, “Weight gain”,
“Physical health issues (including sight and hearing deterioration)”, “Specific
medical conditions (e.g. urinary tract infections, cancer, diabetes and dementia)”
and “Trips and falls” were all nominated as problems.

Emotional or personality issues: There were a number of items identified in

the study that pertained to emotional issues or changes in the individual’s
personality. The participants noted problems in areas such as “Grief (loss of
their own families and friends)”, “Loss of confidence”, “Disrespect towards staff”
and “Losing their ‘identity’ and independence after moving into supported
accommodation”.

Generic health and support needs: The panel described a number of generic
health and support concerns relating to ageing and intellectual disability.
Some of these issues included “Greater support needs” and “Increased simple
and complex health needs”.

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 Table 2 – Issues Identified for Question Two

Issues Identified
Bullying towards other residents and staff
Changes in eating habits (inability to eat certain foods)
Communication problems
Decreased mobility
Deterioration in mental abilities
Disrespect towards staff
Greater support needs
Grief (loss of their own families and friends)
Hormonal issues
Incontinence (bladder and bowel)
Increase in inappropriate and/or aggressive behaviours
Increase in seizure activity
Increased simple and complex health needs
Isolation
Losing their ‘identity’ and independence after moving into supported accommodation
Loss of confidence
Loss of memory
Loss of motivation
Mental health issues such as depression and dementia
Personal hygiene
Physical health issues (including sight and hearing deterioration)
Reduced desire to access services
Reduced desire to participate in activities
Reduced productivity
Reduction in ability to access community independently
Reduction or loss of senses such as vision and hearing
Set in routine (resistant to change)
Specific medical conditions (e.g. urinary tract infections, cancer, diabetes and dementia)
Stereotyping of others
Trips and falls
Weight gain
Withdrawal

4.2.3 Issues Identified for Question Three

There were a total of twenty-seven different issues identified for the third question
“From an individual staff perspective, what are the main issues you experience in providing
support to someone with an intellectual disability who is ageing?” All twenty-seven
issues the participants identified are presented in alphabetical order in Table 3. The
thematic analysis of these responses revealed a number of key concepts within the
identified issues. These themes included issues relating to:

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Funding: As in Question One, the appropriateness of funding levels was
raised as a recurring theme with respect to service provision. The concerns
of participants with respect to funding is seen in items including “Lack of
additional funding to meet increasing needs”, “Lack of government funding for staff
training”, “Lack of government funding for appropriate staffing levels” and “Being
creative in using the funding to meet client needs”.

Access to Services: Items relating to the lack of appropriate services, or the

inability to access generic services, were raised by the participants several
times. This theme was also identified for Question One; however, in this
context the participants identified items of concern such as “Accessing
appropriate professional support”, “Gaining access to appropriate recreational and
leisure activities in retirement such as day services programs”, “Advocating for
clients to get appropriate medical care” and “Long distance travel required to see
suitable medical specialists”.

Health Care: There were a number of items noted by the participants that
pertained specifically to the provision of health care support to people
ageing with an intellectual disability. These issues included “Maintaining
independence, health and well-being”, “Manual handling issues as clients lose
mobility” and “Assisting in increasing personal care needs (such as hygiene)”.

Time Constraints: The participants raised a number of issues relating to time

limitations in performing their job. These items covered generic issues such
as “Time constraints”; however, specific problems also included “Dealing with
personal frustration in not having sufficient time to meet individual needs”,
“Excessive paperwork” and “Reduced productivity by the person”.

Family Issues: While the item “Unrealistic family expectations” was the only
one that specifically mentioned the involvement of the family, the three-way
interaction between client, family and staff could be considered as an
underlying theme to almost all items in Question Three. It is believed that
Question Four, which focussed upon issues involving family and friends,
provided additional items and further clarification for this theme.

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 Table 3 – Issues Identified for Question Three

Issues Identified
Accessing appropriate professional support
Advocating for clients to get appropriate aged care services
Advocating for clients to get appropriate medical care
Assisting in increasing personal care needs (such as hygiene)
Being creative in using the funding to meet client needs
Blending the impact of ageing with issues already faced by people with disabilities
Breaking bad habits that may become unsafe
Communication problems
Dealing with client frustration at not being able to do things
Dealing with personal frustration in not having sufficient time to meet individual needs
Excessive paperwork
Gaining access to appropriate recreational and leisure activities in retirement such as
day services programs
How to assess independence
Lack of additional funding to meet increasing needs
Lack of appropriate venues for community access
Lack of government funding for appropriate staffing levels
Lack of government funding for staff training
Long distance travel required to see suitable medical specialists
Maintaining independence, health and well-being
Manual handling issues as clients lose mobility
Providing constant reassurance
Reduced acceptance of activities
Reduced concentration by the person
Reduced productivity by the person
Reduced stimulation levels
Time constraints
Unrealistic family expectations

4.2.4 Issues Identified for Question Four

There were a total of twenty-four different issues identified for the fourth question
“What do you think are the main issues facing the families and friends (including co-
residents) of someone with an intellectual disability who is ageing?”All twenty-four
issues the participants identified are presented in alphabetical order in Table 4. As
mentioned in section 4.2.3 Issues Identified for Question Three, the theme of Family
Issues and the relationship between individual, family and service provider is a
wide reaching one. It is believed that the thematic analysis for Question Four
helped to clarify some of these issues further. The thematic analysis of the
responses for Question Four revealed a number of key concepts. These themes
included issues relating to:

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Access to Services: The ability of the family to access appropriate services
was seen as an issue of concern. Items that related to access included “Access
to respite”, “Lack of information for families to source services” and “Access to
appropriate facilities to assist people with higher care needs”. These items were
similar to issues raised in Questions One and Three; however, the focus was
specifically on the experience of the family members in accessing relevant
service options.

Understanding and Coping with Ageing: There were a number of items

raised that were associated with a lack of understanding of the ageing
process by family and friends. Some of these items included “Understanding
and separating behavioural issues from physical/mental health issues”, “Household
members reducing the person’s level of independence by attempting to ‘help’ by
doing everything for them” and “Fellow residents not understanding what is going
on (why the person has changed or moved)”.

Ageing Parents: The theme of parent/s ageing concurrently with the person
with the intellectual disability was identified by the participants. These
included both generic issues such as “Ageing parents”, as well as more
specific items like “Family concern about future planning as the person with the
disability may outlive the parents”.

Increasing Care Needs: There were a number of different issues associated

with the effect increasing health care needs has upon family and friends.
The participants identified both direct and indirect items that pertained to
increasing care needs, and these issues included “Concerns about person’s
ongoing and increasing care needs”, “Need for major home renovations (e.g. stairs,
ramps, rails etc)”, “Communication problems” and “Coping with increased
support needs”.

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 Table 4 – Issues Identified for Question Four

Issues Identified
Access to respite
Access to appropriate facilities to assist people with higher care needs
Ageing parents
Clients with lower needs miss out due to an increased focus on person who is ageing
Communication problems
Concerns about person’s ongoing and increasing care needs
Coping with increased support needs
Family concern about future planning as the person with the disability may outlive the
parents
Financial security and ongoing financial management
Friends experiencing depression themselves due to worry about their own mortality
Frustration
Household members reducing the person’s level of independence by attempting to ‘help’ by
doing everything for them
Impact upon closeness of relationship (affected by dementia)
Increased pressure on families to provide ongoing advocacy
Increased reliance upon staff to facilitate family contact (primarily through phone)
Lack of acceptance of the ageing process
Lack of information for families to source services
Lack of patience (everyone wants everything done right now!)
Legal issues (e.g. making a will or power of attorney)
Need for major home renovations (e.g. stairs, ramps, rails etc)
Fellow residents not understanding what is going on (why the person has changed or
moved)
Pressure on friends to cope with changing personality and skills
The need for greater advocacy by the families to gain additional funding as support needs
increase
Understanding and separating behavioural issues from physical/mental health issues

4.2.5 Issues Identified for Question Five

There were a total of twenty-one different issues identified for the fifth question
“What do you think are the main issues or problems facing a rural organisation that
provides support to someone with an intellectual disability who is ageing?” All twenty-
one issues the participants identified are presented in alphabetical order in Table 5.
The thematic analysis of these responses revealed a number of key concepts within
the identified issues. These themes included issues relating to:

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Staff Training and Development: The participants identified a series of staff
training and development issues specifically relevant to the provision of
services. These items included “Training and education for both disability staff
and generic aged care professionals”, “Lack of entry requirements into the industry
(such as a minimum of Cert III in Aged or Disability Work)”, “Access to
appropriate and relevant training for staff re ageing and support for a person with
a disability who is ageing” and “Recruiting qualified and trained staff”. It is
perceived that Question Six, which directly addressed the issue of training
needs, provided additional clarification around this theme.

Funding: As with Questions One and Three, the theme of funding was again
raised by the participants as an issue of concern. Specifically, the
participants identified items of concern such as “Financial viability”, “Care
needs are constantly increasing, whilst funding is not”, “Appropriate funding
models for smaller services without large numbers of ageing clients”, “Funding for
new equipment / home modifications” and “Cost in accessing services (travel costs
and staffing costs)”.

Access to Services: The ability, or otherwise, to access appropriate services

was identified in Questions One, Three and Four, and the participants
again highlighted a number of issues relating to access for rural disability
service providers. In particular, items such as “Lack of mainstream services”,
“Age cut-off for ACAT prevents people with disabilities accessing services”,
“Distance to nearest appropriate services”, “Availability of complementary
services to our own”, “Lack of public transport”, “Lack of specialist services such
as respite and day programs” and “No dedicated aged care facility for people with
intellectual disabilities” underline the participants’ perception of this
problem.

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 Table 5 – Issues Identified for Question Five

Issues Identified
Access to appropriate and relevant training for staff re ageing and support for a person
with a disability who is ageing
Age cut-off for ACAT prevents people with disabilities accessing services
Appropriate funding models for smaller services without large numbers of ageing
clients
Availability of complementary services to our own
Care needs are constantly increasing, whilst funding is not
Competition with the community’s focus upon the increasing needs of the generic
ageing population
Cost in accessing services (travel costs and staffing costs)
Distance to nearest appropriate services
Financial viability
Funding for new equipment / home modifications
Inflexibility in funding models and structures
Lack of entry requirements into the industry (such as a minimum of Cert III in Aged or
Disability Work)
Lack of mainstream services
Lack of public transport
Lack of specialist services such as respite and day programs
Lack of understanding (and willingness to act) by medical profession (doctors and
hospital staff) regarding the ageing process for people with a disability
Mainstream aged care services not understanding how to support someone with a
disability
Maintaining qualified and trained staff
No dedicated aged care facility for people with intellectual disabilities
Recruiting qualified and trained staff
Training and education for both disability staff and generic aged care professionals

4.2.6 Issues Identified for Question Six

There were a total of twenty-six different issues identified for the sixth question
“What do you think are the highest priorities in training for staff who assist individuals
with an intellectual disability who are ageing?” All twenty-six issues the participants
identified are presented in alphabetical order in Table 6. The thematic analysis of
these responses revealed a number of key concepts within the identified issues
with themes including:

Generic Training Issues: Question Six asked the participants specifically

about training priorities and, as such, it was not surprising that a theme of
generic training needs was identified. Some of the generic training
identified by the participants included items such as “Generic aged care

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courses for disability service providers”, “Ability to educate the general public
about client abilities”, “Comprehensive and accurate record keeping to assess
changes over time”, “Understanding of the ageing process and stages that people
move through”, “Attitude training (patience, empathy, consistency, ethics)” and
“Understanding of different support needs at different stages of ageing”.

Medical Issues: The participants identified a number of training issues

relating to the individual health of the people they supported. Examples of
the training priorities in this area included “Medical management”,
“Dementia”, “Diabetes”, “Understanding medication”, “Training in observation
skills so that changes in client health can be detected early” and “Understanding of
health issues”.

Personal Care Issues: There were a series of training priorities proposed by

the participants that pertained to personal care assistance. It was considered
that these items were different in context to the theme of Medical issues as
they did not generally relate to a specific condition but were instead
generalised to issues associated with ageing. Examples of these items
included “Dietetics (meal preparation, tube feeding etc)”, “OH & S and Manual
Handling Training (how to provide appropriate physical support)”, “Specialist
equipment usage” and “Personal care needs”.

Counselling Support: The need for additional training in the area of

counselling was identified by the participants as an important issue. The
two main items that referred to this were “Understanding of emotional issues”
and “Skills (such as counselling) in supporting other service users/housemates in
dealing with the ageing issues of their friend”.

Quality of Life: The issue of training in how to support people ageing with a
disability to maintain their quality of life was identified by the participants.
This need was noted in items which included “Person centred planning” and
“Quality of life management”.

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 Table 6 – Issues Identified for Question Six

Issues Identified
Ability to educate the general public about client abilities
Advocacy to act as the voice for people who are ageing and seek appropriate facilities
Alternative communication methods
Attitude training (patience, empathy, consistency, ethics)
Behaviour management
Comprehensive and accurate record keeping to assess changes over time
Dementia
Diabetes
Dietetics (meal preparation, tube feeding etc)
Generic aged care courses for disability service providers
How to transition people between services effectively
Medical management
OH & S and Manual Handling Training (how to provide appropriate physical support)
Person centred planning
Personal care needs
Quality of life management
Skills (such as counselling) in supporting other service users/housemates in dealing
with the ageing issues of their friend
Specialist equipment usage
Time management
Training in observation skills so that changes in client health can be detected early
Understanding medication
Understanding of changes associated with ageing
Understanding of different support needs at different stages of ageing
Understanding of emotional issues
Understanding of health issues
Understanding of the ageing process and stages that people move through

4.2.7 Summary of Round One of the Delphi

The first round of the Delphi saw a total of 155 items identified by the participants
for the six questions. A number of these items were mentioned in more than one
question. A simple thematic analysis of the responses was conducted to see
whether there were recurring and identifiable trends within the items. There were
a total of twenty-five themes identified for the six questions. A number of these
themes had a similar title and/or conceptual base; however, the context of the
theme was not necessarily consistent across the study as the six questions each
addressed different aspects of ageing with an intellectual disability. The
participants had not yet had the opportunity to indicate their level of agreement
with each individual item and rate the importance of the item. No further
dissection of the data or themes was conducted until the remaining stages of the

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Delphi study had been completed with the levels of participant consensus and
importance being determined for each item.

4.3 Second Round of the Delphi

In the second round of the Delphi study, each of the thirty-one participants was
provided with the collated listing of issues for each of the six questions. The items
were presented in alphabetical order as detailed in the previous sections. Every
participant was asked to review the lists of issues for each of the six questions and
consider whether there were any items that they disagreed with, and also to
suggest any additional issues that had been previously overlooked. Three of the
participants responded with additional suggestions whilst the remaining twenty-
eight participants did not identify any further items. None of the participants
indicated disagreement with any of the issues identified in the first round. The
nominated additional items were for Questions Three, Four and Five.

4.3.1 Additional Items for Question Three

There were two additional issues nominated for Question Three “From an individual
staff perspective, what are the main issues you experience in providing support to someone
with an intellectual disability who is ageing?” These items were:
“Ignorance and lack of respect by general public towards client issues”, and
“Lack of disability accessible parking spots”.

4.3.2 Additional Items for Question Four

There was one additional issue nominated for Question Four “What do you think are
the main issues facing the families and friends (including co-residents) of someone with an
intellectual disability who is ageing?” This item was:
“Residing within a complex with other people with disabilities compounds personal
problems for those who are ageing”.

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4.3.3 Additional Items for Question Five
There were five additional issues nominated for Question Five “What do you think
are the main issues or problems facing a rural organisation that provides support to
someone with an intellectual disability who is ageing?” These items were:
“Lack of flexibility in daily lives due to set routines and restrictive timeframes”,
“Lack of staff skill in utilising and accessing those available mainstream services”,
“Limited opportunities for staff networking (e.g. cross pollination of ideas and
knowledge)”,
“Mainstream aged care services not understanding how to support someone with a
disability”, and
“Overcrowding in the limited space available and lack of personal space”.

4.3.4 Summary of Round Two of the Delphi

The participants were all provided with an opportunity to review the first round
collated lists of responses and indicate any omissions or items with which they
disagreed. The participants did not identify any items with which they disagreed,
and only another eight items across the six questions were suggested for inclusion.
The additional items raised the total number of responses to the six questions from
155 to 163.

The lack of disagreement with the proposed item listings was considered by the
researcher to be an early sign of general consensus with the identified issues, with
this thought to be confirmed or rejected in the third round of the Delphi. The eight
new items for the six questions were considered in light of the existing identified
themes discussed in section 4.2 First Round of the Delphi. It was not considered that
any new themes had emerged on the basis of the additional items.

4.4 Third Round of the Delphi

The third round of the Delphi study involved the thirty-one participants being sent
the collated list of issues for each of the six questions. The lists included the
additional items suggested from the Second Round and were again presented in

170
alphabetical order to prevent any perception of bias by the researcher. The
participants were instructed to read through each list. They were then asked to rate
how important they considered each item using a seven point Likert-type scale in
which:

1 = Irrelevant,
2 = Very Unimportant,
3 = Unimportant,
4 = Neither Important nor Unimportant,
5 = Important,
6 = Very Important, and
7 = Critical.

There were twenty-six completed third round surveys returned by participants,

representing a return rate of 83.9 percent. The participants’ individual scores for
every item for each of the six questions were recorded. The mean, median, mode,
standard deviation and coefficient of variation were calculated. It had been
previously determined (see section 3.6 Determinants of Consensus and Importance)
that the group would be considered to have reached consensus on an individual
item if the coefficient of variation for that issue fell between 0 and 0.5 and if the
standard deviation was equal to 1.0 or less.

If both scores were exceeded, the issue would be deemed to have not reached
consensus. For any issue that failed to meet one of the two criteria, the range of
scores for that item would be further analysed to establish if 80 percent of the
participants’ scores fell within a range of three consecutive scores. If the coefficient
of variation exceeded 0.5, or the standard deviation exceeded 1.0, and if less than 80
percent of the ratings fell within three consecutive scores, it would be considered
that consensus was not established for that item. Any items that were not deemed
to have reached consensus would be re-submitted to the participants for review.

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As stated earlier in section 3.6 Determinants of Consensus and Importance, an item
would be considered ‘important’ if the mean score was greater than 4.5, indicating
that scores were closer to important than the neutral position. However, each
item’s median and mode scores would also need to equal or be greater than a score
of 5 for importance to be attributed. If any item’s mean score was equal to or less
than 4.5, or if the median or mode scores were below 5, the data for that item
would be examined to see if 80 percent of ratings were 5 or greater. If the mean was
below 4.5, or the median or mode scores for any item were below 5, and less than
80 percent of participants rated the item as ‘important’ or greater, the issue would
be considered to be unimportant to the Panel. Any items that were not deemed to
be important by the Panel would be re-submitted to the participants for a further
round of consideration. The rationale and justification for the decisions regarding
the determination of consensus and importance were described in greater detail in
section 3.6 Determinants of Consensus and Importance.

4.4.1 Analysis of Data for Question One Responses

Table 7 presents the mean, median, mode, standard deviation and coefficient of
variation scores for the twenty-five issues from Question One. The issues are
ordered according to mean from highest to lowest. The analysis of the data for
Question One indicated that consensus had been gained on each item. The
coefficient of variation (V) fell between 0 and 0.5 for every item, and the standard
deviation (SD) for each item was less than 1.0. As the Panel had reached the preset
levels for consensus, no items were required to be re-submitted to the group for
further consideration.

The data also showed that all twenty-five items were considered to be important by
the Delphi Panel. Every issue had a mean in excess of 4.5 and median and mode
scores equal to or greater than 5. It was decided at this point in the research to
review the themes as identified in section 4.2.1 Issues Identified for Question One as
the panel had now prioritised the items in terms of importance. The purpose of this
review was to determine whether any themes may have changed or if any new

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themes had emerged following the prioritisation process. While all twenty-five
items had received an overall rating of ‘important’, it was decided to examine the
ten highest rated items as scored by the panel, and determine whether these issues
were broadly reflective of the themes identified in section 4.2.1 Issues Identified for
Question One. The ten most important issues for Question One in the Delphi study,
in terms of mean score, were:

1. “Increasing support needs but no increased support (due to no funding increases)”,

2. “Correct diagnosis of issues by medical practitioners including mental health”,

3. “Having appropriately trained and qualified support staff”,

4. “Placement into mainstream aged care facilities that have no understanding of

disability”,

5. “Access to specialist services such as gerontology and ACAT teams”,

6. “Confusion by staff and medical practitioners about what is ageing versus disability
issues”,

7. “Pension not meeting increased financial needs”,

8. “Doctors (and allied health staff) not prioritising medical attention for this group”,

9. “Having appropriate support services to allow them to age in place safely”, and

10. “Having appropriate housing to allow them to age in place safely”.

There were four general themes identified from the first round responses for
Question One. A review of the top ten issues was conducted, specifically
examining whether these issues were generally reflective of the themes previously
identified. The top ten rated items could all be considered to fit into these four

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themes. The four themes, and how the top ten identified items fitted into these
categories were determined as follows:

The first theme, Access to Services, was considered to reflect three of the top
ten identified issues. These items were “Access to specialist services such as
gerontology and ACAT teams”, “Having appropriate support services to allow
them to age in place safely” and “Having appropriate housing to allow them to age
in place safely”.

The Training Needs theme included the four items “Correct diagnosis of issues
by medical practitioners including mental health”, “Having appropriately trained
and qualified support staff”, “Placement into mainstream aged care facilities that
have no understanding of disability” and “Confusion by staff and medical
practitioners about what is ageing versus disability issues”.

Individual Health, the third of the themes identified for Question One,
covered the item “Doctors (and allied health staff) not prioritising medical
attention for this group”.

The final identified theme, Funding, was believed to be representative of

two items “Increasing support needs but no increased support (due to no funding
increases)” and “Pension not meeting increased financial needs”.

It was considered that the top ten items were all adequately covered by the
identified four themes and that no obvious themes had been overlooked after the
issues had been prioritised according to mean. A more detailed discussion of
specific issues and the themes is presented in Chapter Five.

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 Table 7 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of
Variation (V) for Question One

What do you think are the main issues or problems that a person
with an intellectual disability will face as they age?
No. Issue Mean Median Mode SD V
1 Increasing support needs but no increased
6.81 7.00 7.00 0.49 0.07
support (due to no funding increases)
2 Correct diagnosis of issues by medical
6.65 7.00 7.00 0.63 0.09
practitioners including mental health
3 Having appropriately trained and qualified
6.62 7.00 7.00 0.64 0.10
support staff
4 Placement into mainstream aged care
facilities that have no understanding of 6.54 7.00 7.00 0.71 0.11
disability
5 Access to specialist services such as
6.50 7.00 7.00 0.65 0.10
gerontology and ACAT teams
6 Confusion by staff and medical practitioners
6.46 7.00 7.00 0.90 0.14
about what is ageing versus disability issues
7 Pension not meeting increased financial
6.46 7.00 7.00 0.71 0.11
needs
8 Doctors (and allied health staff) not
6.35 7.00 7.00 0.85 0.13
prioritising medical attention for this group
9 Having appropriate support services to
6.31 6.00 7.00 0.74 0.12
allow them to age in place safely
10 Having appropriate housing to allow them
6.27 6.50 7.00 0.83 0.13
to age in place safely
11 Lack of understanding of disabilities within
6.27 7.00 7.00 0.92 0.15
mainstream aged care services
12 Being able to retire and access appropriate
recreation and leisure activities (day 6.15 6.00 7.00 0.83 0.14
programs etc)
13 Physical deterioration (hearing and sight)
6.12 6.00 6.00 0.71 0.12
and emotional changes (depression)
14 Accessing appropriate equipment and aids 6.08 6.00 7.00 0.89 0.15
15 Decreased communication skills 6.08 6.00 6.00 0.84 0.14
16 Decreased physical ability 6.08 6.00 6.00 0.74 0.12
17 Lack of appropriate facilities 6.08 6.00 6.00 0.74 0.12
18 Specific medical conditions such as early on-
6.08 6.00 6.00 0.80 0.13
set dementia, osteoporosis etc
19 General lack of understanding about the
6.04 6.00 6.00 0.60 0.10
ageing process by staff
20 Decrease in family support as immediate
family is often also ageing (and dying 5.85 6.00 6.00 0.73 0.13
themselves)
21 Hygiene (including managing incontinence) 5.85 6.00 6.00 0.83 0.14
22 Accessing appropriate transport 5.81 6.00 6.00 0.90 0.15
23 Having to leave a house they have lived in
5.77 6.00 6.00 0.91 0.16
for many years/decades
24 Concerns about “what’s next” in their life 5.62 5.50 5.00 0.98 0.18
25 Getting used to new staff 5.58 6.00 6.00 0.58 0.10

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4.4.2 Analysis of Data for Question Two Responses
Table 8 presents the mean, median, mode, standard deviation and coefficient of
variation scores for the thirty-two issues from Question Two. The issues are
ordered according to mean from highest to lowest. The analysis of the data showed
that one item, “Trips and Falls”, reported a marginal score on one of the two initial
tests for consensus. Whilst the coefficient of variation (V) score was in the desired
range between 0 and 0.5, the standard deviation (SD) score of 1.0 was right on the
cusp of the cut-off mark of scores greater than 1.0. An analysis of the individual
ratings revealed that 88.46 percent of participants scored the item with 5 or more.
The item therefore met the criteria of 80 percent of scores within three consecutive
scores, and it was considered consensus had been achieved. The data indicated that
consensus had been gained on the other thirty-one items. The coefficient of
variation (V) fell between 0 and 0.5 for every item, and the standard deviation (SD)
for each item was less than 1.0. As the Panel had reached the preset levels for
consensus, no items for Question Two were required to be re-submitted to the
group for further consideration.

All thirty-two items were considered to be important by the Delphi Panel. Every
issue had a mean score greater than 4.5, and median and mode score equal to or
greater than 5. While all thirty-two items received an overall rating of ‘important’,
an examination was conducted on the top ten highest rated items as scored by the
panel to see whether they were broadly reflective of the themes identified in
section 4.2.2 Issues Identified for Question Two. The 10 most important issues for
Question Two in the Delphi study, in terms of mean score, were:

1. “Greater support needs”,

2. “Increased simple and complex health needs”,

3. “Isolation”,

4. “Mental health issues such as depression and dementia”,

5. “Deterioration in mental abilities”,

176
 6. “Loss of memory”,

7. “Communication problems”,

8. “Trips and falls”,

9. “Incontinence (bladder and bowel)”, and

10. “Specific medical conditions (e.g. urinary tract infections, cancer, diabetes and
dementia)”.

There were four general themes identified from the first round responses for
Question Two. A review of the top ten issues was conducted, specifically
examining whether these issues were generally reflective of the themes previously
identified. The top ten rated items could all be considered to fit into these four
themes. The four themes, and how the top ten identified items fitted into these
categories, were determined as follows:

Mental Functioning, the first theme, was believed to include the items
“Mental health issues such as depression and dementia”, “Deterioration in mental
abilities” and “Loss of memory”.

The second theme, Physical Issues, included “Communication problems”,

“Trips and falls” and “Incontinence (bladder and bowel)”.

The Emotional or Personality issues theme was considered to reflect the

issue of “Isolation”.

The last identified theme, Generic Health and Support Needs, covered the
three issues of “Greater support needs”, “Increased simple and complex health
needs” and “Specific medical conditions (e.g. urinary tract infections, cancer,
diabetes and dementia)”.

It was considered that the top ten items were all adequately covered by the
identified four themes and that no obvious themes had been overlooked after the

177
issues had been prioritised according to mean. A more detailed discussion of the
specific issues and over-arching themes is presented in Chapter Five.

Table 8 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of

Variation (V) for Question Two

What are the main signs of ageing that you have seen in people with intellectual disabilities (i.e.
physical health issues, social impacts, emotional issues, mental health issues)?
No. Issue Mean Median Mode SD V
1 Greater support needs 6.35 6.50 7.00 0.80 0.13
2 Increased simple and complex health needs 6.27 6.00 7.00 0.78 0.12
3 Isolation 6.15 6.00 6.00 0.78 0.13
4 Mental health issues such as depression and
6.15 6.00 6.00 0.73 0.12
dementia
5 Deterioration in mental abilities 6.12 6.00 6.00 0.71 0.12
6 Loss of memory 6.08 6.00 6.00 0.69 0.11
7 Communication problems 6.04 6.00 6.00 0.53 0.09
8 Trips and falls 6.04 6.00 6.00 1.00 0.17
9 Incontinence (bladder and bowel) 6.00 6.00 6.00 0.75 0.12
10 Specific medical conditions (e.g. urinary tract
5.96 6.00 5.00 0.82 0.14
infections, cancer, diabetes and dementia)
11 Set in routine (resistant to change or even more
5.92 6.00 6.00 0.80 0.13
resistant than previously)
12 Changes in eating habits (inability to eat
5.88 6.00 7.00 0.99 0.17
certain foods)
13 Decreased mobility 5.88 6.00 6.00 0.77 0.13
14 Grief (loss of their own families and friends) 5.88 6.00 5.00 0.86 0.15
15 Loss of motivation 5.81 6.00 6.00 0.75 0.13
16 Losing their ‘identity’ and independence after
5.73 6.00 6.00 0.92 0.16
moving into supported accommodation
17 Reduction in ability to access community
5.73 6.00 6.00 0.87 0.15
independently
18 Withdrawal 5.69 6.00 6.00 0.93 0.16
19 Reduction or loss of senses such as vision and
5.65 6.00 6.00 0.89 0.16
hearing
20 Weight gain or weight loss 5.58 6.00 6.00 0.64 0.12
21 Physical health issues (including sight and
5.54 6.00 6.00 0.99 0.18
hearing deterioration)
22 Loss of confidence 5.46 5.00 5.00 0.71 0.13
23 Increase in inappropriate and/or aggressive
5.46 5.00 5.00 0.99 0.18
behaviours
24 Reduced productivity 5.42 6.00 6.00 0.99 0.18
25 Personal hygiene 5.42 5.00 5.00 0.81 0.15
26 Reduced desire to participate in activities 5.35 6.00 6.00 0.94 0.18
27 Reduced desire to access services 5.23 5.00 6.00 0.99 0.19
28 Increase in seizure activity 5.23 5.00 5.00 0.91 0.17
29 Hormonal issues 5.19 5.50 6.00 0.98 0.19
30 Stereotyping of others 5.19 5.00 5.00 0.94 0.18
31 Bullying towards other residents and staff 5.00 5.00 5.00 0.94 0.19
32 Disrespect towards staff 4.92 5.00 6.00 0.98 0.20

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4.4.3 Analysis of Data for Question Three Responses
Table 9 presents the mean, median, mode, standard deviation and coefficient of
variation scores for the twenty-nine issues from Question Three. The analysis of the
data showed that three items, “Lack of government funding for training”, “Long
distance travel required to see suitable medical specialists” and “Ignorance and lack of
respect by general public towards client issues” exceeded the cut-off mark on one of the
two initial tests for consensus. Whilst the coefficient of variation (V) scores were all
in the desired range between 0 and 0.5, the standard deviation (SD) scores for all
three items were all equal to or in excess of 1.0. An analysis of the individual
ratings revealed that
for the Item “Lack of government funding for training”, 92.3 percent of
participants scored the item with five or more; and
both Item “Long distance travel required to see suitable medical specialists” and
Item “Ignorance and lack of respect by general public towards client issues” had
88.5 percent of scores within range of five to seven.

The three items all met the criteria of 80 percent of scores within the designated
range of three scores and it was considered consensus had been achieved on each
item. The data indicated that consensus had been gained on the other twenty-six
items. The coefficient of variation (V) fell between 0 and 0.5 for every item, and the
standard deviation (SD) for each item was less than 1.0. As the Panel had reached
the preset levels for consensus, no items for Question Three were required to be re-
submitted to the group for further consideration.

All twenty-nine items were considered to be important by the Delphi Panel. Every
issue had a mean score greater than 4.5 and median and mode score equal to or
greater than 5. The issues are ordered according to mean from highest to lowest.
While all twenty-nine items received an overall rating of ‘important’, the ten
highest rated items as scored by the panel were again considered separately to
examine if they were representative of the themes identified in section 4.2.3 Issues
Identified for Question Three. The 10 most important issues for Question Three in the
Delphi study, in terms of mean score, were:

179
 1. “Lack of government funding for appropriate staffing levels”,

2. “Lack of additional funding to meet increasing needs”,

3. “Advocating for clients to get appropriate medical care”,

4. “Gaining access to appropriate recreational and leisure activities in retirement such

as day services programs”,

5. “Being creative in using the funding to meet client needs”,

6. “Accessing appropriate professional support”,

7. “Lack of government funding for staff training”,

8. “Maintaining independence, health and well-being”,

9. “Blending the impact of ageing with issues already faced by people with
disabilities”, and

10. “Manual handling issues as clients lose mobility”.

There were five general themes identified from the first round responses for
Question Three. A review of the top ten issues was conducted, specifically
examining whether these issues were generally reflective of the themes previously
identified. Eight of the top ten rated items were considered to fit into three of these
five themes. The three themes, and how the eight identified items fitted into these
categories, were determined as follows:

The first theme, Funding, was considered to include the four items “Lack of
government funding for appropriate staffing levels”, “Lack of additional funding to
meet increasing needs”, “Being creative in using the funding to meet client needs”
and “Lack of government funding for staff training”.

The theme Access to Services was believed to incorporate the issues

associated with “Gaining access to appropriate recreational and leisure activities

180
 in retirement such as day services programs” and “Accessing appropriate
professional support”.

The third theme of Health Care reflected the issues of “Advocating for clients
to get appropriate medical care” and “Maintaining independence, health and well-
being”.

The issues rated ninth and tenth most important, “Blending the impact of ageing with
issues already faced by people with disabilities” and “Manual handling issues as clients
lose mobility”, were not considered to fall clearly into any of the five designated
theme categories. The themes of Time Constraints and Family Issues were not
considered to specifically include any of the top ten issues. A review of all twenty-
nine items, and the previously identified five themes was performed. It was
considered that the remaining nineteen items did include issues that were
appropriately categorised into the themes of Time Constraints and Family Issues.
As such, it was believed that these two themes were still appropriate. While two of
the top ten issues did not fit an identified theme, it was perceived that they were
singular items that were not reflective of any larger themes throughout the entire
twenty-nine item listing.

The review concluded that the existing five themes were still appropriate, even
though there were two items in the top ten that did not fit into these
categorisations. An analysis of all the themes identified across the six questions did
reveal that the item “Manual handling issues as clients lose mobility” was similar to
items within the theme Generic Training Issues in section 4.4.6 Analysis of Data for
Question Six Responses. Likewise, the issue of “Blending the impact of ageing with
issues already faced by people with disabilities” was largely reflective of the theme of
Understanding and Coping with Ageing in section 4.4.4 Analysis of Data for
Question Four Responses. A more detailed discussion of the specific issues and over-
arching themes is presented in Chapter Five.

181
 Table 9 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of
Variation (V) for Question Three

From an individual staff perspective, what are the main issues you experience in providing
support to someone with an intellectual disability who is ageing?
No. Issue Mean Median Mode SD V
1 Lack of government funding for appropriate
6.54 7.00 7.00 0.58 0.09
staffing levels
2 Lack of additional funding to meet increasing
6.50 7.00 7.00 0.65 0.10
needs
3 Advocating for clients to get appropriate
6.38 7.00 7.00 0.80 0.13
medical care
4 Gaining access to appropriate recreational and
leisure activities in retirement such as day 6.38 7.00 7.00 0.80 0.13
services programs
5 Being creative in using the funding to meet
6.35 6.00 6.00 0.63 0.10
client needs
6 Accessing appropriate professional support 6.27 6.50 7.00 0.83 0.13
7 Lack of government funding for staff training 6.23 7.00 7.00 1.18 0.19
8 Maintaining independence, health and well-
6.23 6.00 6.00 0.65 0.10
being
9 Blending the impact of ageing with issues
6.15 6.00 6.00 0.83 0.14
already faced by people with disabilities
10 Manual handling issues as clients lose mobility 5.96 6.00 6.00 0.66 0.11
11 Advocating for clients to get appropriate aged
5.92 6.00 6.00 0.93 0.16
care services
12 Communication problems 5.88 6.00 6.00 0.82 0.14
13 Dealing with personal frustration in not
5.88 6.00 6.00 0.99 0.17
having sufficient time to meet individual needs
14 Assisting in increasing personal care needs
5.85 6.00 6.00 0.97 0.17
(such as hygiene)
15 Time constraints 5.85 6.00 6.00 0.92 0.16
16 How to assess independence 5.81 6.00 6.00 0.63 0.11
17 Long distance travel required to see suitable
5.73 6.00 6.00 1.25 0.22
medical specialists
18 Unrealistic family expectations 5.73 6.00 6.00 0.92 0.16
19 Dealing with client frustration at not being
5.69 6.00 6.00 0.97 0.17
able to do things
20 Excessive paperwork 5.69 5.00 5.00 0.97 0.17
21 Breaking bad habits that may become unsafe 5.62 6.00 6.00 0.90 0.16
22 Lack of appropriate venues for community
5.46 5.00 5.00 0.95 0.17
access
23 Providing constant reassurance 5.38 5.00 5.00 0.94 0.17
24 Reduced concentration by the person 5.27 5.00 5.00 0.83 0.16
25 Reduced stimulation levels 5.19 5.00 5.00 0.90 0.17
26 Ignorance and lack of respect by general public
5.15 5.00 5.00 1.16 0.22
towards client issues
27 Reduced acceptance of activities 5.00 5.00 5.00 0.89 0.18
28 Reduced productivity by the person 5.00 5.00 5.00 0.89 0.18
29 Lack of disability accessible parking spots 5.00 5.00 5.00 0.98 0.20

182
4.4.4 Analysis of Data for Question Four Responses

Table 10 presents the mean, median, mode, standard deviation and coefficient of

variation scores for the twenty five issues from Question Four. The analysis of the

data showed that one item, “Clients with lower needs miss out due to an increased focus

on person who is ageing”, reported a marginal score on one of the two initial tests for

consensus. Whilst the coefficient of variation (V) score was in the desired range

between 0 and 0.5, the standard deviation (SD) score of 1.0 was exactly on the cut-

off limit of scores greater than 1.0. An analysis of the individual ratings revealed

that 96.2% of participants scored the item with 5 or more. The item therefore met

the criteria of 80% of scores within three consecutive scores, and it was considered

consensus had been achieved.

The data indicated that consensus had been gained on the other twenty four items.

The coefficient of variation (V) fell between 0 and 0.5 for every item, and the

standard deviation (SD) for each item was less than 1.0. As the Panel had reached

the preset levels for consensus, no items for Question Four were required to be re-

submitted to the group for further consideration. All twenty five items were

considered to be important by the Delphi Panel. Every issue had a mean score

greater than 4.5 and median and mode score equal to or greater than 5. The issues

are ordered according to mean from highest to lowest.

While all twenty five items received an overall rating of ‘important’, a process of

reviewing the relevance of the themes, as identified in section 4.2.4 Issues Identified

for Question Four, was conducted. The ten most important issues for Question Four

in the Delphi study, in terms of mean score, were:

183
 1. “Access to appropriate facilities to assist people with higher care needs”,

2. “Access to respite”,

3. “Ageing parents”,

4. “Family concern about future planning as the person with the disability may

outlive the parents”,

5. “Understanding and separating behavioural issues from physical/mental health

issues”,

6. “Coping with increased support needs”,

7. “Financial security and ongoing financial management”,

8. “Concerns about person’s ongoing and increasing care needs”,

9. “Clients with lower needs miss out due to an increased focus on person who is

ageing”, and

10. “Communication problems”.

There were four general themes identified from the first round responses for

Question Four. A review of the top ten issues was conducted, specifically

examining whether these issues were generally reflective of the themes previously

identified. All of the top ten rated items were considered to fit into these four

themes. The four themes, and how the top ten identified items fitted into these

categories, was determined as follows:

184
 The theme, Access to Services, was perceived to incorporate the issues

“Access to appropriate facilities to assist people with higher care needs” and

“Access to respite”.

The second theme, Understanding and Coping with Ageing, included the

item “Understanding and separating behavioural issues from physical/mental

health issues”.

The theme of Ageing Parents was considered to include the issues

associated with “Ageing parents”, ”Financial security and ongoing financial

management” and “Family concern about future planning as the person with the

disability may outlive the parents”.

Increasing Care Needs, the last of the 4 themes, covered the items of “Coping

with increased support needs”, “Concerns about person’s ongoing and increasing

care needs”, “Clients with lower needs miss out due to an increased focus on person

who is ageing” and “Communication problems”.

It was considered that the top ten items were all adequately covered by the

identified four themes and that no obvious themes had been overlooked after the

issues had been prioritised according to mean. A more detailed discussion of the

specific issues and over-arching themes is presented in Chapter Five.

185
 Table 10 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of
Variation (V) for Question Four

What do you think are the main issues facing the families and friends (including co-residents) of
someone with an intellectual disability who is ageing?
No. Issue Mean Median Mode SD V
1 Access to appropriate facilities to assist people
6.54 7.00 7.00 0.51 0.08
with higher care needs
2 Access to respite 6.46 7.00 7.00 0.65 0.10
3 Ageing parents 6.46 7.00 7.00 0.65 0.10
4 Family concern about future planning as the
6.46 7.00 7.00 0.76 0.12
person with the disability may outlive the parents
5 Understanding and separating behavioural issues
6.38 6.00 6.00 0.70 0.11
from physical/mental health issues
6 Coping with increased support needs 6.31 6.00 6.00 0.74 0.12
7 Financial security and ongoing financial
6.31 6.00 6.00 0.68 0.11
management
8 Concerns about person’s ongoing and increasing
6.19 6.00 6.00 0.69 0.11
care needs
9 Clients with lower needs miss out due to an
5.96 6.00 7.00 1.00 0.17
increased focus on person who is ageing
10 Communication problems 5.96 6.00 6.00 0.77 0.13
11 Friends experiencing depression themselves due
5.88 6.00 6.00 0.99 0.17
to worry about their own mortality
12 The need for greater advocacy by the families to
gain additional funding as support needs 5.85 6.00 6.00 0.83 0.14
increase
13 Impact upon closeness of relationship (affected
5.73 6.00 6.00 0.83 0.14
by dementia)
14 Legal issues (e.g. making a will or power of
5.73 6.00 6.00 0.96 0.17
attorney)
15 Fellow residents not understanding what is going
5.69 6.00 6.00 0.93 0.16
on (why the person has changed or moved)
16 Need for major home renovations (e.g. changing
5.65 6.00 5.00 0.98 0.17
stairs to ramps, rails in bathrooms, etc)
17 Residing within a complex with other people
with disabilities compounds personal problems 5.65 6.00 6.00 0.85 0.15
for those who are ageing
18 Lack of patience (everyone wants everything
5.62 5.50 5.00 0.70 0.12
done right now!)
19 Household members reducing the person’s level
of independence by attempting to ‘help’ by doing 5.62 5.50 5.00 0.90 0.16
everything for them
20 Increased pressure on families to provide
5.54 6.00 6.00 0.90 0.16
ongoing advocacy
21 Lack of information for families to source services 5.54 6.00 6.00 0.81 0.15
22 Pressure on friends to cope with changing
5.54 6.00 6.00 0.76 0.14
personality and skills
23 Frustration 5.46 6.00 6.00 0.95 0.17
24 Increased reliance upon staff to facilitate family
5.42 5.00 5.00 0.76 0.14
contact (primarily through phone)
25 Lack of acceptance of the ageing process 5.31 5.00 5.00 0.68 0.13

186
4.4.5 Analysis of Data for Question Five Responses
Table 11 presents the mean, median, mode, standard deviation and coefficient of
variation scores for the twenty-five issues from Question Five. The issues are
ordered according to mean from highest to lowest. The analysis of the data
indicated that consensus had been gained on each item. The coefficient of variation
(V) fell between 0 and 0.5 for every item, and the standard deviation (SD) for each
item was less than 1.0. As the Panel had reached the preset levels for consensus, no
items were required to be re-submitted to the group for further consideration.

The data also showed that all twenty-five items were considered to be important by
the Delphi Panel. Every issue had a mean in excess of 4.5 and median and mode
scores equal to or greater than 5. While all twenty-five items received an overall
rating of ‘important’, the ten highest rated items as scored by the panel were
examined specifically to establish whether they were broadly representative of the
themes identified in section 4.2.5 Issues Identified for Question Five. The ten most
important issues for Question Five in the Delphi study, in terms of mean score,
were:

1. “Care needs are constantly increasing, whilst funding is not”,

2. “Training and education for both disability staff and generic aged care
professionals”,

3. “Recruiting qualified and trained staff”,

4. “Inflexibility in funding models and structures”,

5. “Maintaining qualified and trained staff”,

6. “Age cut-off for ACAT prevents people with disabilities accessing services”,

7. “Access to appropriate and relevant training for staff re ageing and support for a
person with a disability who is ageing”,

187
 8. “Appropriate funding models for smaller services without large numbers of ageing
clients”,

9. “Lack of mainstream services available to people with disabilities”, and

10. “Lack of specialist services such as respite and day programs”.

There were three general themes identified from the first round responses for
Question Five. A review of the top ten issues was conducted, specifically
examining whether these issues were generally reflective of the themes previously
identified. All of the top ten rated items were considered to fit into these three
themes. The three themes, and how the top ten identified items fitted into these
categories, were determined as follows:

Staff training and development, the first theme, was seen to broadly
incorporate the four issues “Training and education for both disability staff and
generic aged care professionals”, “Recruiting qualified and trained staff”,
“Maintaining qualified and trained staff” and “Access to appropriate and relevant
training for staff re ageing and support for a person with a disability who is
ageing”.

The second theme, Funding, was considered to include the issues “Care
needs are constantly increasing, whilst funding is not”, “Inflexibility in funding
models and structures” and “Appropriate funding models for smaller services
without large numbers of ageing clients”.

The theme of Access to services was perceived to encapsulate the issues

“Age cut-off for ACAT prevents people with disabilities accessing services”, “Lack
of mainstream services available to people with disabilities” and “Lack of specialist
services such as respite and day programs”.

It was considered that top ten items were all adequately covered by the identified
three themes, and that no obvious themes had been overlooked after the issues had
been prioritised according to mean. A more detailed discussion of the specific
issues and over-arching themes is presented in Chapter Five.

188
 Table 11 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of
Variation (V) for Question Five

What do you think are the main issues or problems facing a rural organisation that provides support to
someone with an intellectual disability who is ageing?
No. Issue Mean Median Mode SD V
1 Care needs are constantly increasing, whilst
6.88 7.00 7.00 0.33 0.05
funding is not
2 Training and education for both disability staff
6.58 7.00 7.00 0.58 0.09
and generic aged care professionals
3 Recruiting qualified and trained staff 6.54 7.00 7.00 0.71 0.11
4 Inflexibility in funding models and
6.50 7.00 7.00 0.71 0.11
Structures
5 Maintaining qualified and trained staff 6.50 7.00 7.00 0.81 0.12
6 Age cut-off for ACAT prevents people with
6.42 6.50 7.00 0.64 0.10
disabilities accessing services
7 Access to appropriate and relevant training for
staff re ageing and support for a person with a 6.38 7.00 7.00 0.80 0.13
disability who is ageing
8 Appropriate funding models for smaller services
6.35 7.00 7.00 0.80 0.13
without large numbers of ageing clients
9 Lack of mainstream services available to people
6.35 6.00 6.00 0.49 0.08
with disabilities
10 Lack of specialist services such as respite and day
6.35 6.00 7.00 0.69 0.11
programs
11 Cost in accessing services (travel costs and
6.31 6.00 7.00 0.74 0.12
staffing costs)
12 Financial viability 6.27 6.00 7.00 0.78 0.12
13 Mainstream aged care services not understanding
6.27 6.00 6.00 0.67 0.11
how to support someone with a disability
14 No dedicated aged care facility for people with
6.27 6.50 7.00 0.92 0.15
intellectual disabilities
15 Lack of entry requirements into the industry
(such as a minimum of Cert III in Aged or 6.23 6.00 7.00 0.91 0.15
Disability Work)
16 Lack of understanding (and willingness to act) by
medical profession (doctors and hospital staff)
6.23 6.50 7.00 0.95 0.15
regarding the ageing process for people with a
disability
17 Availability of complementary services to our
6.15 6.00 7.00 0.83 0.14
own
18 Funding for new equipment / home
5.96 6.00 6.00 0.77 0.13
modifications
19 Competition with the community’s focus upon
the increasing needs of the generic ageing 5.92 6.00 6.00 0.84 0.14
population
20 Lack of public transport 5.92 6.00 6.00 0.93 0.16
21 Lack of staff skill in utilising and accessing those
available mainstream services 5.92 6.00 6.00 0.89 0.15

22 Distance to nearest appropriate services 5.85 6.00 6.00 0.78 0.13

23 Limited opportunities for staff networking (e.g.
5.54 6.00 6.00 0.95 0.17
cross pollination of ideas and knowledge)
24 Overcrowding in the limited space available and
5.54 5.00 5.00 0.95 0.17
lack of personal space
25 Lack of flexibility in daily lives due to set routines
5.15 5.00 5.00 0.97 0.19
and restrictive timeframes

189
4.4.6 Analysis of Data for Question Six Responses
Table 12 presents the mean, median, mode, standard deviation and coefficient of
variation scores for the twenty-six issues from Question Six. The issues are ordered
according to mean from highest to lowest. The analysis of the data indicated that
consensus had been gained on each item. The coefficient of variation (V) fell
between 0 and 0.5 for every item, and the standard deviation (SD) for each item
was less than 1.0. As the Panel had reached the preset levels for consensus, no
items were required to be re-submitted to the group for further consideration.

The data also showed that all twenty-six items were considered to be important by
the Delphi Panel. Every issue had a mean in excess of 4.5, and median and mode
scores equal to or greater than 5. While all twenty-six items received an overall
rating of ‘important’, the same process of reviewing the ten highest rated items as
scored by the panel as to whether they were broadly reflective of the themes
identified in section 4.2.6 Issues Identified for Question Six was performed. The ten
most important issues for Question Six in the Delphi study, in terms of mean score,
were:
1. “Person centred planning”,

2. “Medical management”,

3. “Understanding medication and its effects”,

4. “Understanding of changes associated with ageing”,

5. “Quality of life management”,

6. “Training in observation skills so that changes in client health can be detected

early”,

7. “Behaviour management”,

8. “Attitude training (patience, empathy, consistency, ethics)”,

9. “OH & S and Manual Handling Training (how to provide appropriate physical
support)”, and

10. “Personal care needs”.

190
There were five general themes identified from the first round responses for
Question Six. A review of the top ten issues was conducted, specifically examining
whether these issues were generally reflective of the themes previously identified.
All of the top ten rated items were considered to fit into four of these five themes.
The four themes, and how the top ten identified items fitted into these categories,
was determined as follows:

Generic Training Issues, the first theme, was believed to include the issues
of “Training in observation skills so that changes in client health can be detected
early”, “Behaviour management”, “Attitude training (patience, empathy,
consistency, ethics)”, and “OH & S and Manual Handling Training (how to
provide appropriate physical support)”.

The second theme, Medical Issues, incorporated the issues of “Medical

management” and “Understanding medication and its effects”.

The Personal Care Issues theme was considered to include the issue
“Personal care needs”.

The last theme, Quality of Life, was seen to incorporate the two issues
“Person centred planning” and “Quality of life management”.

The theme of Counselling Support was not considered to specifically include any of
the top ten issues. A review of all twenty-six items, and the previously identified
five themes was performed. It was considered that the remaining sixteen items
included issues that were appropriately categorised into the theme of Counselling
Support. As such, it was believed that this theme was still appropriate. It was
considered that the top ten items were all adequately covered by four of the
identified five themes, and that no obvious themes had been overlooked after the
issues had been prioritised according to mean. A more detailed discussion of the
specific issues and over-arching themes is presented in Chapter Five.

191
 Table 12 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of
Variation (V) for Question Six

What do you think are the highest priorities in training for staff who assist individuals
with an intellectual disability who are ageing?
No. Issue Mean Median Mode SD V
1 Person centred planning 6.62 7.00 7.00 0.57 0.09
2 Medical management 6.58 7.00 7.00 0.64 0.10
3 Understanding medication and its effects 6.58 7.00 7.00 0.64 0.10
4 Understanding of changes associated
6.54 7.00 7.00 0.71 0.11
with ageing
5 Quality of life management 6.50 6.50 6.00 0.51 0.08
6 Training in observation skills so that
changes in client health can be detected 6.50 7.00 7.00 0.71 0.11
early
7 Behaviour management 6.42 7.00 7.00 0.70 0.11
8 Attitude training (patience, empathy,
6.35 6.00 7.00 0.69 0.11
consistency, ethics)
9 OH & S and Manual Handling Training
(how to provide appropriate physical 6.35 7.00 7.00 1.09 0.17
support)
10 Personal care needs 6.35 6.00 7.00 0.69 0.11
11 Understanding of health issues 6.35 6.00 6.00 0.56 0.09
12 Understanding of the ageing process and
6.31 6.00 6.00 0.62 0.10
stages that people move through
13 Understanding of different support needs
6.27 6.00 6.00 0.72 0.12
at different stages of ageing
14 Dementia 6.23 6.00 6.00 0.86 0.14
15 Comprehensive and accurate record
6.15 6.00 6.00 0.67 0.11
keeping to assess changes over time
16 Generic aged care courses for disability
6.15 6.00 6.00 0.73 0.12
service providers
17 Understanding of emotional issues 6.12 6.00 7.00 0.82 0.13
18 Dietetics (meal preparation, tube feeding
6.04 6.00 6.00 0.92 0.15
etc)
19 How to transition people between
6.04 6.00 6.00 0.72 0.12
services effectively
20 Time management 6.00 6.00 6.00 0.69 0.12
21 Alternative communication methods 5.92 6 6 0.89 0.15
22 Skills (such as counselling) in supporting
other service users/housemates in
5.92 6 6 0.69 0.12
dealing with the ageing issues of their
friend
23 Advocacy to act as the voice for people
who are ageing and seek appropriate 5.88 6 6 0.95 0.16
facilities
24 Diabetes 5.62 6 6 0.75 0.13
25 Specialist equipment usage 5.54 6 6 0.65 0.12
26 Ability to educate the general public
5.42 6 6 0.95 0.17
about client abilities

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4.4.7 Summary of Round Three of the Delphi
It was concluded that all 163 individual items within the six questions had
achieved participant consensus and were rated as important. A total of five items
from Questions Two, Three and Four had one test score that indicated a need for
further review; however, these five items all passed the secondary test of having 80
percent of scores falling into the designated range of three consecutive scores on
the seven point scale. There was, therefore, no reason to submit any items back to
the Panel for re-evaluation in order to try and gain even higher levels of consensus.

The researcher did not expect this result to occur without the need for the Panel to
reconsider some items before determining a final consensus position. However, in
light of the fact that the participants had each contributed to the development of
this list of issues, and had then reviewed all the items for relevance, it is perhaps
not surprising that there was such a high level of agreement. The participants had
not identified any items of disagreement during the second round of the Delphi.
This outcome had been noted by the researcher as a positive early sign of the
group’s consensus (see section 4.3.4 Summary of Round Two of the Delphi), and this
belief was confirmed in the Third Round results.

A review of the themes identified following the First Round of the study was
performed by considering the top ten items according to mean score with respect to
the individual themes. This process was conducted to establish whether any
additional themes had emerged, or if any themes appeared redundant, following
the prioritisation of the items. It was concluded that the themes identified after the
First Round were still relevant and appropriate, and that no additional themes had
emerged following the ranking of the items.

4.5 Final Round of the Delphi

A final round of surveys was added to this Delphi study. This step involved the
mean-ordered lists for each of the six questions being sent to the participants, with
an instruction to rate their level of agreement with the prioritised lists (see Appendix

193
8). This stage is not normally utilised with Delphi studies, with the survey finishing
once consensus and importance has been established for each item. However, it
was considered appropriate to include another stage in the study as the Third
Round of the Delphi had not identified any items of disagreement. It was felt that
this additional step was an appropriate checking mechanism to confirm that the
participants were in agreement with the final mean ordered lists. Each participant
was asked to indicate their level of agreement with each of the six mean ordered
lists of issues using a five point Likert scale in which:

1 = Strongly Disagree,
2 = Disagree,
3 = Neither Agree nor Disagree,
4 = Agree, and
5 = Strongly Agree.

The Likert Scale was changed from the seven point scale used in the previous
stages of the Delphi to a five point scale. This change was enacted to reflect the
simplification of this round and following feedback from the pilot study (see
section 3.4.2 Pilot Study). As there were only six responses required in this survey,
one for each of the six questions, the need for more options allowing for greater
levels of distinction between items that was evident earlier in the Delphi was not
required. The final stage of the survey had twenty of the original thirty-one
participants return the completed form, representing a return rate of 64.5 percent of
the initial participant group, and 76.9 percent of the twenty-six Third Round
Respondents. This attrition rate was not unexpected, considering the length of the
survey, and total number of respondents to the final stage still fell within the
ranges of desired panel size as discussed in section 3.1.1 Overview of the Delphi
Method.

4.5.1 Analysis of Data for the Final Round

Table 13 presents the mean, median, mode, standard deviation and coefficient of
variation scores of the lists for Questions One to Six. The analysis of the data

194
showed that the Delphi Panel were in agreement with the mean ordered lists for all
six questions. Each question had a mean equal to or in excess of 4.75 and median
and mode scores of 5. The data also indicated that consensus had been gained on
each item. The coefficient of variation (V) was between 0 and 0.5 each time, and in
fact was below 0.10 for all six questions. Likewise, the standard deviation (SD) for
each item was not just less than 1.0 but less than 0.50 for each question. Every
participant’s response indicated either their agreement or strong agreement with
the lists for the six questions. In light of the strong levels of consensus in the
previous round of the research, this result is not surprising. However, it did
confirm the findings of the three rounds of the Delphi study.

Table 13 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of

Variation (V) of the lists for Questions One to Six

No. Question Mean Median Mode SD V

1 What do you think are the main issues or
problems that a person with an intellectual 4.95 5 5 0.22 0.05
disability will face as they age?
2 What are the main signs of ageing that you
have seen in people with intellectual
4.75 5 5 0.44 0.09
disabilities (i.e. physical health issues, social
impact, emotional issue, mental health issue)
3 From an individual staff perspective, what are
the main issues you experience in providing
4.85 5 5 0.37 0.08
support to someone with an intellectual
disability who is ageing?
4 What do you think are the main issues facing
the families and friends (including co-
4.8 5 5 0.41 0.09
residents) of someone with an intellectual
disability who is ageing?
5 What do you think are the main issues or
problems facing a rural organisation that
4.85 5 5 0.37 0.08
provides support to someone with an
intellectual disability who is ageing?
6 What do you think are the highest priorities in
training for staff who assist individuals with 4.75 5 5 0.44 0.09
an intellectual disability who are ageing?

4.6 Senior Managers’ Views

There was one final stage to the research which was completed prior to finalising
the data capture component. This step, which was not a component of the Delphi
process, involved sending the survey utilised in the final round of the Delphi (see
Appendix 8) to the Chief Executive Officers of the participating disability
organisations for rating. In some situations, the Chief Executive Officer nominated

195
a Senior Service Manager to act as their delegate in completing this survey, as the
Chief Executive Officer indicated that this person would provide a more
meaningful contribution.

This stage of the study was conducted to see what level of agreement the Chief
Executive Officers/Senior Service Managers had with the prioritised listing
developed by the direct care staff that composed the Delphi Panel. Each participant
was asked to indicate his/her level of agreement with the final prioritised lists of
issues using the same five point Likert scale as utilised in the final round of the
Delphi in which:

1 = Strongly Disagree,
2 = Disagree,
3 = Neither Agree nor Disagree,
4 = Agree, and
5 = Strongly Agree.

Slightly over 50 percent (8/15) responses were received from the Chief Executive
Officers/Senior Service Managers of the originally approached organisations in
this additional stage of the research. While there were no direct care participants
from The Tulgeen Group in the Delphi study (see section 3.5.2 Data Collection
Procedures and section 3.7 Limitations), the Chief Executive Officer of that
organisation did complete this stage of the project. Attempts were made to increase
the number of responses for this component of the study through direct contact
with particular individuals. A number of these potential participants indicated that
they were extremely busy with other work commitments at that time but that they
would attempt to respond. However, these approaches were ultimately not
successful in garnering the return of any additional surveys by the designated
finish date. While other priorities were provided as an explanation, it is impossible
to exclude the possibility that any Chief Executive Officers/Senior Managers who
did not agree with the survey results elected not to respond. Similarly, the overall
small number of respondents to this stage does mean that this component of the

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research must be treated with caution; however, the results are still worth
reporting.

Table 14 presents the mean, median, mode, standard deviation and coefficient of
variation scores for this additional stage of research. The analysis of the data
showed that the Chief Executive Officers/Senior Service Managers were in
agreement with the prioritised lists for all six questions. Each question had a mean
in excess of 4.25, with median and mode scores of 4 or greater. The data also
indicated that consensus had been gained on each item. The coefficient of variation
(V) for each item was between 0 and 0.5, and the standard deviations (SD) less than
1.0

As with the Final Round results (see section 4.5.1 Analysis of Data for the Final
Round), every participant’s response in this stage indicated their ‘agreement’ or
‘strong agreement’ with the prioritised lists for the six questions. Overall, the level
of agreement was high but slightly lower than the figure indicated by the actual
Delphi participants. That difference was not unexpected, as this stage of the
research represented the first time the Chief Executive Officers /Senior Service
Managers had seen the items in the lists, as they had not been part of the initial
development and review.

While the small sample size is not ideal, the results add further support to the
findings of the Delphi study. It is worth noting that there appears to be general
agreement between both direct care staff and their senior managers with respect to
the identification of the main issues. A further research project could be to reverse
the focus of the study, with a new Delphi Panel being composed entirely of Chief
Executive Officers and Senior Managers. It would be worth investigating whether
the same general themes would again be identified in such a follow-up study, and
whether the direct care staff were then similarly in agreement with their senior
managers’ identified issues.

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 Table 14 – Mean, Median, Mode, Standard Deviation (SD) and Coefficient of
Variation (V) of the lists for Questions One to Six as Scored by the CEOs

No. Question Mean Median Mode SD V

1 What do you think are the main
issues or problems that a person with
4.63 5 5 0.52 0.11
an intellectual disability will face as
they age?
2 What are the main signs of ageing
that you have seen in people with
intellectual disabilities (i.e. physical
4.38 4 4 0.52 0.12
health issues, social impacts,
emotional issues, mental health
issues)?
3 From an individual staff perspective,
what are the main issues you
experience in providing support to 4.63 5 5 0.52 0.11
someone with an intellectual
disability who is ageing?
4 What do you think are the main
issues facing the families and friends
(including co-residents) of someone 4.63 5 5 0.52 0.11
with an intellectual disability who is
ageing?
5 What do you think are the main
issues or problems facing a rural
organisation that provides support to 4.38 4 4 0.52 0.12
someone with an intellectual
disability who is ageing?
6 What do you think are the highest
priorities in training for staff who
4.75 5 5 0.46 0.10
assist individuals with an intellectual
disability who are ageing?

4.7 Conclusion
Chapter Four contains a summary of the results of the findings from each stage of
the Delphi study. It also includes a review of the additional component of the
research, in which the leaders of the disability organisations responded to the
participants’ prioritised lists of issues for each of the six questions in the Delphi
study. The demographics of the Delphi participants were presented. The results
from the Delphi were outlined, with the priorities of the Panel for each of the six
questions clearly established. A series of key meaning units were established
through a simple thematic analysis of the items. The prioritised listing of items by
the participants provided new key knowledge with respect to ageing and
intellectual disability issues. The following chapter discusses both the emerging
themes and individual items identified and rated as important by the participants
in the study.

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 Chapter Five - Discussion of Results

Introduction
Chapter Five presents a discussion and examination of the data and findings. It
commences with the demographics of the Delphi Panel participants being
compared to the available information regarding the wider disability sector
workforce. This chapter presents an in-depth discussion of the findings from the six
questions that underpinned the Delphi study. The prioritised listing of items
gained from the participants facilitated the identification of the specific issues and
associated key themes impacting upon rurally based service provision. The focus of
the discussion pertains to the identified themes including funding, access to
appropriate services, training issues and health care needs. The impact of the
ageing needs of people with an intellectual disability is discussed with specific
reference to rural workforce issues.

5.1 Disability Sector Workforce Demographics

It was not possible to establish current demographic profiles for employees within
the intellectual disability sector in rural New South Wales (NSW). Neither State nor
Australian Government data provide an accurate breakdown of the intellectual
disability workforce in NSW, or specifically, individuals employed within rural
and remote areas of the state. In 2008, the combined State and Commonwealth
Governments’ Community and Disability Services Ministers’ Advisory Council
(CDSMAC) commissioned the Community Services Workforce Profiling Project, a
comprehensive national workforce survey. It was expected that the results of this
survey would not be provided to CDSMAC until December 2009 (National
Disability Services, 2008b), and a public release of the information may occur
sometime in 2010. Until the results from this nation-wide survey are released,
smaller-scale studies from across Australia provide the best available demographic
profile for the sector.

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Dempsey and Arthur (2002) conducted a survey of 357 disability workers in
selected non-government disability organisations in NSW and reported:
28.5 percent of the participants were male,
38 percent of the participants had a qualification relevant to their work,
47.5 percent of the participants had worked in the sector for between two
and five years, with only 7.2 percent having been disability workers for
more than ten years, and
91.2 percent of the participants were aged over twenty-six, with 36 percent
aged over forty-five.

However, the results of Dempsey and Arthur’s research were limited by a number
of factors which reduced their general applicability to the current project. Their
findings included employees of both state and commonwealth funded services
with no differentiation of the data. It was uncertain whether the 357 participants
were representative of the wider disability sector workforce across NSW. It was
noted that the survey had a moderate return rate of approximately 50 percent. The
results are also nearly a decade old, and changes may have occurred in the profile
of the data since then.

The Victorian Government’s Department of Human Services (2005) reported that

approximately 78 percent of its state non-government disability sector workforce
was female, with the remaining 22 percent male. It also recorded the following age
demographics:
8.9 percent were aged less than 25 years,
23.2 percent were aged 25-34,
27.6 percent were aged 35-44,
28.7 percent were aged 45-54, and
11.6 percent were aged over 55.

With respect to years of working in the disability sector:

31 percent of staff had more than ten years experience,
19 percent of staff had between six and ten years experience, and
Only 18 percent of staff had less than two years experience.

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The training qualifications of the cohort included:
48.2 percent with completed TAFE qualifications,
3 percent had completed an undergraduate qualification, and
5.7 percent had completed a postgraduate qualification.

A commissioned report by the Lime Management Group (2006) provided general

support for the above figures from Victoria. It indicated that 40 percent of the
people employed within the disability sector were over the age of forty-five, and 75
percent were female. 20 percent of the workforce did not have any relevant
qualifications, with between 30 and 50 percent of staff having obtained a post-
school qualification.

National Disability Services (NDS) completed a national workforce project in 2009.

While this project did not specifically collect extensive demographic data, one
component of the research was a survey of direct support workers. This survey had
1168 respondents from across Australia, with 73 percent being female and 59
percent of the participants aged over forty (Shaddock & Rose, 2009). These limited
participant statistics provided some confirmation to the demographic information
gained from the previous research projects.

5.1.1 Demographic Issues in Current Study

In most regards, the demographics of the participants in the current research study
(see section 4.1 Demographic Characteristics of Study Participants) were similar to
those seen in previous research. For example, the current study’s group was
composed of twenty-six females and five males. The higher percentage of female
participants was consistent with the findings of the Dempsey and Arthur (2002),
Department of Human Services (2005), Lime Management Group (2006) and
Shaddock and Rose (2009) studies. However, there was one key area of difference
between the current project’s participants and the demographic data from the
previous studies. This distinction was seen in the levels of training that had been
undertaken. The education and training background of the Delphi Panel was

201
higher than would have been expected from the demographic statistics from
Dempsey and Arthur (2002), the Department of Human Services (2005) and the
Lime Management Group (2006). Of the participants in the current study,
approximately 97 percent reported having relevant training and education. This
figure was in contrast to the expected rate of between 30 and 50 percent in the
previous research.

It was perceived that there are two possible reasons for this higher than expected
training and education figure. Firstly, there had been a significant push within the
disability sector over the past three or four years to ensure that all staff were
appropriately trained. This training had been focussed upon the attainment of a
Certificate III or IV in Disability. An example of this focus was seen in The Ascent
Group, where all staff were enrolled into a Certificate III in Disability as part of
their employment (Kevin Mead, pers. comm., 28 July 2009). Contact was made with
the other organisations within the study, and they indicated an adoption of a
similar policy within the past few years (Peter Dunstan, pers. comm., 15 July 2008;
Fiona Miller, pers. comm., 10 March 2008).

This approach to structured training has only become widespread recently with the
re-introduction of service auditing by the Department of Ageing, Disability and
Home Care (DADHC) in 2005. DADHC’s system of auditing, called the Integrated
Monitoring Framework (IMF), examined the training and education provided to
staff amongst many other service provision factors. While it was not mandatory to
possess qualifications to work in the disability field, such qualifications were
looked upon favourably during auditing, and many organisations had therefore
implemented structured training programs since 2005.

This new structured approach to accredited training had largely occurred since the
Dempsey and Arthur, Department of Human Services and Lime Management
Group studies were completed in 2002, 2005 and 2006 respectively. It is likely that
the current percentage of NSW staff with an accredited qualification is higher than
that reported in the previous studies as a consequence of the subsequent focus

202
upon training over the past five years. As such, it appears possible that the current
study’s higher than expected education levels is an accurate reflection of the sector,
and that the previous data is simply outdated. However, this conclusion is
impossible to ratify until an updated demographic study of the NSW disability
workforce is conducted.

A second reason for the higher than expected number of participants with a post-
school qualification could be that individuals who have successfully completed
training are more likely to agree to participate in research studies such as the
current one. This rationale was examined carefully prior to the final stages of the
research commencing, with a specific focus upon whether it would have any
impact upon the results the Panel would generate. After consideration, it was
concluded that it was unlikely that the level of education would make a significant
difference to the results of the study. It is believed that, even if the level of training
did result in participants making different assessments on the impact that ageing
has upon someone with an intellectual disability, this difference would largely be a
positive one. It was perceived that these individuals would be better skilled and
knowledgeable and theoretically in a position to make more accurate observations
and judgements. However, this issue cannot be completely discounted, and the
results of the study would need to be considered with this factor in mind.

5.2 Discussion of Question One Issues

Participants from the Delphi Panel individually proposed a total of twenty-five
different issues for the question “What do you think are the main issues or problems that
a person with an intellectual disability will face as they age?” The participants achieved
a group consensus position, both in terms of fact that all twenty-five issues were
considered to be important and also with respect to their priority relative to each
other. There were a number of over-arching themes identified within the twenty-
five issues. They are discussed in greater detail in the following sections with
specific reference to key items which include funding, training needs, access to
services and individual health issues.

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5.2.1 Funding
One of the key themes identified within Question One was Funding (see section
4.2.1 Issues Identified for Question One). The wording of the highest priority issue in
this question was “Increasing support needs but no increased support (due to no funding
increases)”. This result indicates that the participants consider the need for adequate
funding of services to address ageing issues to be very important. The failure of
both the state and commonwealth governments to appropriately address the
financing of services for ageing people with intellectual disabilities is reflected by
the participants’ identification of increasing support needs without similarly
increasing funding as its top priority. Nonetheless, it is easy to argue that the
sufficiency or otherwise of funding is a factor that is constantly raised across the
entire community services sector and is not exclusive to the issue of ageing and
disability. In a 2009 Australian Council of Social Services (ACOSS) study, only 8
percent of respondent organisations felt that the level of government funding was
sufficient for community services (Australian Council of Social Services, 2009).

Likewise, it has been identified that rural and remote Australia has been
experiencing a significant decline in prosperity over the past few decades, reducing
the capacity of residents within these areas to pay for support services (Barr, 2004;
Budge, 2006). However, why the issue of funding is particularly relevant to
disability organisations, and why it deserves closer examination, relates to the
establishment of many older supported accommodation services in rural New
South Wales (NSW).

The deinstitutionalisation of specialist congregate care disability facilities, where

people with intellectual disabilities were re-housed into smaller discrete residences
situated within the wider community (see section 2.2.3 History of Intellectual
Disability Services in New South Wales), commenced around two decades after such
practices began in the United States of America and Europe (Young & Ashman,
2004). Stimulus for changes in accommodation models started to occur following
the release of the Inquiry into Health Services for the Psychiatrically Ill and the
Developmentally Disabled Report, commonly known as the Richmond Report, in 1983.

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The principal author, David Richmond, made a number of key recommendations
including the funding of a system of small community based accommodation
services, backed up by specialist hospital and accommodation services (NSW Audit
Office, 1997). In 1998, the NSW Government made a policy decision to work
towards closing all government run and funded institutions through the provision
of alternative community based support options; however, it must be noted that
this goal had still not been achieved over a decade later (Epstein-Frisch, 2007).

In NSW, the first rural demonstration project took place in 1986 when a group of
twenty adult residents within a hostel in Armidale were supported to relocate into
individual flats and houses by Challenge Armidale (Edmundson et al, 2005). This
project was financed initially by the State Government as a demonstration model
using a ‘block funding’ grant and was similar to the process undertaken by the
metropolitan based Hornsby Challenge (Van Dam & Cameron-McGill, 1995). This
model involved the disability organisation receiving one set figure to cover service
provision for a group of clients, rather than a specified sum of money per
individual. The project was reviewed over the first three years and it was deemed
to be a desirable model to replicate (Edmundson et al, 2005). Similar models of
deinstitutionalisation then started being introduced over the following years across
rural NSW.

Following the success of the project in Armidale, the block funding grant was
converted to an annual figure paid to Challenge Armidale. However, over twenty
years later the organisation was still being block funded for this same group of
people (Kevin Mead, pers. comm., 7 August 2007). Whilst the block grant amount
is subject to annual indexing, there is no clear and easy process for reviewing and
increasing this total in the situation of new or emerging needs. This same block
grant funding model applies to some other rurally based service providers who
provide accommodation services (Nicola Chirlian, pers. comm., 31 August 2009). In
some circumstances the block funding figure had been converted to individualised
funding; however, the calculation of the individual figure was performed simply
by splitting the total block grant arbitrarily between each of the residents. There

205
was no process of review and re-evaluation of changing individual need at that
point in time.

In recent years, the State Government has pursued a model of providing individual
rather than block funding for accommodation services. This change facilitates
organisations to structure the provision of service around the specific and changing
needs of the individual (Department of Ageing, Disability and Home Care, 2006).
However, this model has not necessarily been applied retrospectively, and many
disability organisations established prior to the year 2000 still operate with
accommodation service based upon a block grant formula calculated decades
earlier.

The only way to increase the level of funding for an accommodation service was to
apply directly to the Government for viability funding, and to argue that providing
living assistance to that group of people was no longer financially feasible.
However, in order to prove that the service was unviable, the disability
organisation had to provide audited financial statements that showed a serious
deficit for each of the past three financial years. The major problem with this
system was that very few service providers in rural areas could afford to operate in
a substantial deficit situation for twelve months, let alone multiple years. Rural
providers, in particular smaller independent charities and non-government
organisations, do not generally have significant financial reserves to draw upon in
years of loss. Therefore, the decision was often made to reduce the level of service
in order to continue operations at a lower cost, which was achieved through cuts in
support hours. The decrease in support hours was usually accomplished by
focusing primarily on meeting the increasing personal care needs of the individual,
while reducing their community integration and participation programs (Kevin
Mead, pers. comm., 28 October, 2009).

Unfortunately, the consequence of a decision to operate at a ‘break-even’ financial

position, but with reduced hours, was then used by Government to argue that the
service was still viable and therefore not eligible for more funding (Kevin Mead,

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pers. comm., 28 October, 2009). This scenario is a classic example of a governmental
‘Catch-22’ policy (Heller, 1995). The disability providers are trapped in a situation
when, in order to get additional funding to adequately support people with a
disability as they age, the organisations need to prove their lack of viability by
demonstrating three consecutive years of serious losses. However, the rural
provider is realistically never able to prove this scenario, as they would have
ceased operations completely if they had sustained substantial losses over that
period of time. The ultimate outcome is that people with a disability do not get any
additional funding support as they age, and that many of their quality of life
programs are either reduced or completely cease in order to meet the increasing
medical and personal care needs.

Block funded services generally originated with the movement of adults with an
intellectual disability into the community. It is now twenty four-years since the
commencement of the Armidale project, and the passing of nearly a quarter of a
century has naturally seen some of the adults within this group start to experience
age-related issues. However, as these block funded programs do not have an easy
process to gain additional financial support as the needs of people increase, it is not
surprising that the direct support workers identify a lack of funding as the major
impediment people with a disability face as they age. Bigby (2008a, p. 76) noted
that
the absence of mechanisms to adjust disability funding as needs change,
and the existence of policy that denies residents in group homes access
to community-based aged care, forces disability services to “go it alone”
to support ageing in place.

A recent report by the NSW Ombudsman (2009, p. 64) also commented on this
problem and it concluded that
services generally have to try to meet the changing needs of their ageing
clients from within their existing resources, with no increase in funding
to take account of increased support needs.

With the ongoing absence of additional funding or a clear process for review, it
does not appear that these current problems can be resolved.

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The participants rated the fact that the Disability Pension is not meeting the
increasing needs of the individual as the seventh most important issue for Question
One. This survey was completed prior to the release of the 2009 Federal Budget in
which this issue was formally recognised at a national level. The Commonwealth
Government implemented an increase for both the Aged and Disability Pensions
from 20 September 2009 (Centrelink, 2009b). Whether this proposed increase is
sufficient remains to be seen; however, it is an important step towards addressing
the problem. A development in the 2009 Federal Budget was the proposal that the
retirement age be increased by two years from sixty-five to sixty-seven in 2017
(Commonwealth of Australia, 2009a). This suggestion has received both support
and condemnation from various sectors of the community (Australian
Broadcasting Corporation, 2009a), and with the implementation date still some a
number of years away it is not clear what impact this proposed change will have.

5.2.2 Training Needs

The theme of Training Needs was identified in section 4.2.1 Issues Identified for
Question One. Four of the six highest rated statements for Question One related to
issues that could be addressed by training and education programs, either for
disability workers or the wider community based health services. These four issues
were “Correct Diagnosis of issues by medical practitioners including mental health”,
“Having appropriately trained and qualified support staff”, Placement into mainstream
aged care facilities that have no understanding of disability” and “Confusion by staff and
medical practitioners about what is ageing versus disability issues”. Three of these four
training priorities made reference to factors external to the role of direct care work
in terms of the fact that they nominated either people or situations outside a
disability organisation’s realm of direct daily influence. In particular, doctors and
medical practitioners being able to correctly distinguish between what are pre-
existing factors resulting from the disability, as opposed to newer problems that
have emerged as part of the ageing process, was clearly of concern to the
participants.

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In rural areas, the local general practitioner usually has to deal with every medical
issue that arises across all sectors of the community (NSW Rural Doctors Network,
2008). It is therefore very difficult for a doctor to remain up to date with all aspects
of specialist areas, such as the ageing of people with intellectual disability. The case
in which a person with an intellectual disability also has a mental health issue,
commonly known as a dual diagnosis, complicates the situation even further for
rural general practitioners. It is estimated that between 30 to 40 percent of people
with an intellectual disability will also have a mental health issue (NSW Council for
Intellectual Disability, 2005). There is also a long-standing shortage of psychiatrists
with expertise or even interest in the field of intellectual disability (Molony, 1993).

Cook and Lennox (2000) noted that general practice registrars in Australia had only
received approximately six hours of training in the area of intellectual disability. A
preliminary examination by the researcher of the curriculum programs at the six
medical training schools in New South Wales (Sydney University, University of
New South Wales, University of Newcastle, University of New England, University
of Wollongong and University of Western Sydney) indicates minimal emphasis
upon the issues facing people with an intellectual disability, let alone the combined
factors of ageing or mental health within this sub-section of the community. These
current results mirror those of a more comprehensive study conducted by Lennox
and Diggens (1999), indicating that little has changed with respect to educating
medical practitioners about intellectual disability in the past decade.

There were another four issues identified as being important by the Delphi Panel
which could be successfully addressed through appropriate training. The third
highest rated issue was “Having appropriately trained and qualified staff” which was
followed by the fourth highest scoring issue “Placement into mainstream aged care
facilities that have no understanding of disability”. These issues were largely mirrored
by later items “Lack of understanding of disabilities within mainstream aged care
services” and “General lack of understanding about the ageing process by staff”. All four
of these issues refer largely to generic training concepts. Question Six of the Delphi,
which specifically examined training issues for disability workers, provided greater

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clarification with respect to training and these issues are discussed further in
section 5.1.6 Results from Question Six.

5.2.3 Access to Services

Access to Services was recognised as one of the four themes in Question One (see
section 4.2.1 Issues Identified for Question One). Seven of the issues identified as
important by the participants referred to difficulties in people with disabilities
accessing and receiving appropriate community based services. The fifth highest
rated issue for Question One was “Access to specialist services such as gerontology and
ACAT teams”, followed by “Doctors (and allied health staff) not prioritising medical
attention for this group”, “Having appropriate support services to allow them to age in
place safely”, “Being able to retire and access appropriate recreation and leisure activities
(day programs etc)”, “Accessing appropriate equipment and aids”, “Lack of appropriate
facilities” and “Accessing appropriate transport”.

In June 2009, the Australian Council on Social Services (ACOSS) released a state-
wide community sector survey. In this study, 170 agencies across New South Wales
(NSW) reported upon their support programs and activities for the Financial Years
of 2006/07 and 2007/08. The report asked participating organisations to indicate
what their highest priorities were for client need in accessing services outside of
their own programs. The third highest priority area for accessing support was
ageing and disability. It is worth noting that this survey did not distinguish
between various disability types and considered them all generically under the
label of ‘disability’. While the issue of ageing and disability was rated as less
important than long term housing and health care, it was still perceived as more
critical than issues such as crisis and supported accommodation, transport,
domestic violence and sexual assault services (Australian Council of Social Service,
2009). These findings indicate that accessing ageing and disability services is
difficult across all areas of the state. However, the major factor around the world
that limits access to appropriate services has been found to be a rural location. It
was specifically noted that geographic location has a great impact upon the

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availability of intellectual disability services in Australia (World Health
Organisation, 2007).

Availability of appropriate services in rural and remote areas of NSW is of course

not limited to people with intellectual disabilities. Rural residents generally have
significantly less access to both general practitioners and allied health
professionals, whilst experiencing higher levels of mortality and morbidity that
their metropolitan counterparts (NSW Rural Doctors Network, 2008). In 2009, the
Commonwealth Government of Australia acknowledged this problem with the
appointment of Warren Snowden as the inaugural Minster for Indigenous Health,
Rural and Regional Health and Regional Services Delivery. In an interview with
ABC Radio, Snowden accepted that rural and remote areas continue to face a
number of significant difficulties, and that a shortage of both doctors and allied
health professionals was evident (Australian Broadcasting Corporation, 2009b).

While it is recognised that most rural areas face problems in accessing services, the
cohort of people with intellectual disabilities do face a number of specific problems
in gaining appropriate specialist assistance. The Australian Institute of Health and
Welfare’s report General practice in Australia, health priorities and policies 1998 to 2008
did not even identify intellectual disability as an area of concern to general
practitioners, although other issues such as mental health were recognised
(Australian Institute of Health and Welfare, 2009). People with intellectual
disabilities around the developed world face numerous disparities in a variety of
medical issues such as preventative care, health promotion and equitable access to
health care (Krahn, Hammond & Turner, 2006). It has been identified in Europe
that specialist health services have to make a particular effort to engage and
interact with ageing people with intellectual disabilities as they are at risk of being
overlooked. The planning of services to this group need to be pro-active and
designed to deliberately facilitate access (Dodd et al, 2008b). Whilst the overall
health of people with intellectual disabilities is generally lower than mainstream
society (see section 2.4.1.1 Health Issues), this difference was found not to

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correspond necessarily with access rates to generic community health programs in
Britain (Webb & Stanton, 2008).

Particularly concerning is the fact that the NSW Ombudsman reported some
people with disabilities had died as the consequence of health services failing to
provide appropriate levels of treatment. The rationale reportedly given by the
health care staff for this failure was that people with disabilities had an inferior
quality of life (NSW Ombudsman, 2006). Medical staff also failed to consult
appropriately with the individual or family and made independent judgements
about the need for treatments, including the non-performance of Cardiopulmonary
Resuscitation with minimal or no documentation (NSW Ombudsman, 2007).

Another issue that is of relevance to people with intellectual disabilities, as

described in section 2.2.6 Australian Funding of Disability and Aged Care Services,
pertains to the confusion surrounding differing departments within the different
levels of government that oversee service delivery (Baker, 2007). In NSW, the
Department of Ageing, Disability and Home Care (DADHC) is considered to have
carriage of most disability programs. This Department both funds and operates
direct care support programs and also employs staff to provide allied health care
services such as physiotherapy, psychology, occupational therapy and speech
pathology. However, a separate State Government department, NSW Health, also
provides disability and allied health services. There are sub-groups of the cohort of
people with disabilities who are serviced by NSW Health if they have a minor
intellectual disability, but DADHC if they have a moderate intellectual disability
(Doherty, 2007).

On the national level, the Department of Education, Employment and Workplace

Relations (DEEWR) oversees the Disability Employment Network program, whilst
another Commonwealth department, Families, Housing, Community Services and
Indigenous Affairs (FaHCSIA), coordinates the Australian Disability Enterprises
system. The situation becomes even more convoluted when the issue of ageing
becomes a factor. Some aged care services, predominantly those provided in-home,

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are overseen by DADHC. Residential aged care, as well as community programs
such as Extended Aged Care at Home (EACH) and Community Aged Care
Packages (CACP), are the responsibility of the Commonwealth Department of
Health and Ageing (DoHA). The Aged Care Assessment Teams (ACATs), who
determine eligibility for accessing EACH and CACP programs, are overseen by
DoHA. The third tier of government in Australia, local councils, also provide
generic aged care services such as day programs for aged and dementia care.

With responsibility for the provision and coordination of disability and aged care
services split between various departments and different levels of government, it is
not unexpected that difficulty in understanding the systems are reported by
parents, clients and other stakeholders (Doherty, 2007). The NSW Ombudsman 2008-
2009 Annual Report concluded that “there is currently no clear policy guidance for
services about ‘ageing in place’ for people with disabilities in care” (NSW
Ombudsman, 2009, p. 64). The complication of multiple service levels is
particularly relevant to the ageing of people with intellectual disabilities. The
concept of ‘double-dipping’, where a person is deemed to already be serviced and
therefore not eligible for additional support, is often used as the rationale to refuse
access. As an example, individuals with an intellectual disability residing within a
group home are often deemed ineligible to receive specialist in-home aged care
support services to maintain this placement (Dowse, McDermott & Watson, 2009;
Nicola Chirlian, pers. comm., 31 August 2009). They are considered to be already
receiving living support and therefore should not be given any additional
assistance, in spite of the fact that the person is experiencing ageing-related issues
that were not evident when they first entered the accommodation placement.

The NSW Ombudsman (2009, p. 64) commented specifically on this impediment to

services access, noting that
ageing clients who live in supported accommodation are unable to
access community-based aged care supports available to ageing people
in the general community – such as Community Aged Care Packages.
This is because of the existing separation between the disability and
aged care sectors.

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Health services, both nationally in Australia and regionally in NSW, are widely
viewed as being under-resourced and under-staffed (Van Der Weyden, 2009). This
lack of resourcing can result in long waiting lists and the prioritising of access
(Queensland Council of Social Service, 2008). Individuals who are considered to be
the responsibility of another government department can experience difficulties in
gaining access to appropriate services. This problem is evident in situations of
ageing, as well as dual diagnosis. A person with an intellectual disability and a
mental health issue can experience significant problems in receiving support, with
an argument between differing government departments about which is the
primary disability and who has ultimate responsibility. If the person is ageing, it
merely complicates the situation further. In this environment, and particularly in
rural areas where there are fewer doctors and allied health staff, it is hardly
surprising that the participants identified access to services as a serious issue.

5.2.4 Individual Health

Five of the twenty-five issues identified as important by the participants related
either to medical or physical health issues being experienced by the individual with
an intellectual disability (see section 4.2.1 Issues Identified for Question One).
However, none of these issues were prioritised within the top ten, with “Physical
deterioration (hearing and sight) and emotional changes (depression)” the highest rated
item at number thirteen. Other medical or individual health issues raised by the
participants included a decrease in communication and physical abilities, the onset
of specific ageing conditions such as dementia and osteoporosis, and personal
hygiene. It was considered that Question Two in the Delphi study provided greater
clarification with respect to participants’ perceptions of individual health issues,
and therefore these items are discussed in more detail in section 5.1.2 Results from
Question Two.

5.3 Discussion of Question Two Issues

Participants from the Delphi Panel individually proposed a total of thirty- two
different issues for the question “What are the main signs of ageing that you have seen
in people with intellectual disabilities (i.e. physical health issues, social impacts, emotional

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issues, mental health issues)?” The participants achieved a group consensus position,
both in terms of fact that all thirty-two issues were considered to be important and
also with respect to their priority relative to each other. There were a number of
over-arching themes identified within the thirty-two issues, and they are discussed
in greater detail in the following sections with specific reference to key items.

5.3.1 Generic Health and Support Needs

The top two rated issues by the participants were both generic, in terms of referring
to “Greater Support Needs” and “Increased simple and complex health needs”. While
both of these issues are undoubtedly important, there is little actual detail in the
items regarding specific problems. It is believed that some of the later items within
Question Two will provide additional clarification regarding the actual signs of
ageing the disability workers were seeing emerge in people with intellectual
disabilities.

5.3.2 Mental Functioning

One of the key themes within Question Two related to mental functioning (see
section 4.2.2 Issues Identified for Question Two). A review of the literature on mental
health issues experienced by people with intellectual disabilities as they age was
presented in section 2.4.1.1 Health Issues in Ageing with an Intellectual Disability. In
the current study, three of the top six issues raised by the participants were related
to mental health or diminishing mental capacity issues. “Mental health issues such as
depression and dementia”, “Deterioration in mental abilities” and “Loss of memory” were
all rated as important by the participants. Some studies have reported that 20
percent of people with intellectual disabilities over the age of sixty-five have a
major psychiatric illness, such as depression (Bland et al, 2003). The three mental
health issues identified by the participants could all be considered as being generic
to the wider aged care sector and certainly not unique to the disability sector.
However, mental health issues become particularly significant for this group when
considered in light of their existing intellectual disability.

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As a sector of society, people with intellectual disabilities already have an existing
deficit in their daily functioning when compared to the mainstream ageing
community. As they start to experience ageing-related problems such as dementia
or memory loss the capacity of this group to cope with normal activities can
decrease faster as a consequence of their lifelong disability. The ageing issues can
magnify any existing problems, and the individual may also experience a major
decrease in any life domains that they were previously competent in. This
situation, in which the existing intellectual disability is overlaid with new ageing-
related mental issues, presents families, support staff and medical practitioners
with a very complex scenario to try and understand.

Three of the issues considered to be important by the participants were

“Withdrawal”, “Reduced desire to participate in activities” and “Reduced desire to access
services”. While it is not completely clear, it would appear possible that these issues
are related to mental health problems such as depression. Studies have shown that
people with intellectual disabilities are at risk of developing depression or
depressive symptoms, with the incidence of depression possibly even higher than
the general population (Cooper et al, 2007b; Lowry, 1998; Meins, 1993; Thorpe,
Davidson & Janicki, 2001). Two behaviours designated as symptoms of depression
include a “lack of interest and enjoyment” and “reduced energy leading to
increased fatigability and diminished activities” (World Health Organization, 1992,
p. 119). It is considered that people with forms of intellectual disability display
similar depressive symptomatology to the mainstream community (Tsiouris, 2001).
Disability staff are not trained in how to deal with mental health issues such as
depression and the lack of rural counselling services adds further to the difficulty
in addressing these problems.

One of the significant problems that many rural service providers face is finding
appropriate activities for people with disabilities. Unlike some larger metropolitan
areas, access to a variety of different educational and recreational pastimes in small
country towns can be extremely difficult. This problem can become even more
significant when the ageing person with a disability starts to lose their ability or

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desire to take part in programs they have previously enjoyed and been capable of
undertaking.

5.3.3 Physical Issues

The third theme identified for Question Two pertained to Physical Issues (see
section 4.2.2 Issues Identified for Question Two). Three of the top ten issues the
participants identified as being important related to a reduction in the individual’s
physical health or physical abilities. These items were “Trips and falls”,
“Incontinence (Bladder and bowel)” and “Specific medical conditions (e.g. urinary tract
infections, cancer, diabetes and dementia”. Another nine issues with a significant
physical component were also considered to be important signs of ageing within
people with intellectual disabilities. These items were “Communication problems”,
“Changes in eating habits (inability to eat certain foods), “Decreased mobility”, “Reduction
in ability to access community independently”, “Reduction or loss of senses such as vision
or hearing”, “Weight gain or weight loss”, “Physical health issues (including sight and
hearing deterioration), “Increase in seizure activity” and “Hormonal issues”.

The physical changes associated with the ageing of a person with an intellectual
disability have been well recognised and documented (Janicki & Dalton 1999;
Walsh, 2005). All of the twelve physical health items identified by the participants
would appear to be quite similar to problems that would be expected to be
reported within the mainstream ageing cohort and consistent with the issues
discussed in section 2.4.1.1 Health Issues in Ageing with an Intellectual Disability.
There were no ageing issues identified that would appear to be specific to the sub-
group of people with intellectual disabilities. The answers of the participants
indicate an underlying perception that the physical ageing of people with
intellectual disabilities is not markedly different to that experienced by a person
without a disability.

The fact that the participants did not identify any significant physical issues
specific to the group supports the notion that the physical aspects of aged care
training could be introduced generically across the intellectual disability sector.

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While there are some aspects of ageing with an intellectual disability that require
specifically designed training programs, coordinated access by disability workers
to generic aged care training for physical care issues would appear to be sufficient
to address the needs of this important issue. However, it is worth noting that, while
the physical health issues for people with an intellectual disability may be similar
to those experienced by the mainstream, the management of these problems may
be complex. There are a number of complicating factors such as the age at which
the issues begin emerging, a multiplicity of problems occurring simultaneously, an
inability of the individual to correctly articulate their concerns, irregular health
checks, and a lack of appropriately trained clinicians. While the physical health
issues may be addressed generically, these additional concerns still require
consideration at a management level to ensure that the individual receives an
appropriate level of care.

5.3.4 Emotional or Personality Issues

The last theme for Question Two related to Emotional or Personality Issues (see
section 4.2.2 Issues Identified for Question Two). The participants identified a number
of important issues that pertain largely to emotional factors or personality changes
associated specifically with the ageing process. Items included “Grief (loss of their
own families and friends)”, “Losing their ‘identity’ and independence after moving into
supported accommodation”, ‘Isolation”, “Loss of confidence”, “Bullying towards other
residents and staff” and “Disrespect towards staff”. Emotional issues and problems
associated with coping with loss during ageing have been identified in people with
intellectual disabilities (Ludlow, 1999; Moss, 1999) and were previously discussed
in greater detail in section 2.4.1.4 People with an Intellectual Disability and Grief.
Studies have shown that that people with intellectual disabilities do experience
grief when a friend or family member passes away (Dodd, Dowling & Hollins,
2005; McHale & Carey, 2002), and that this grief reaction is not significantly
different to that expected in the general community (Stoddart, Burke & Temple,
2002). However, Read (1998) found that disability support staff experienced
difficulty not only in coping with the actual death of the person, but also in how to

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then provide emotional support to the surviving residents who lived in the same
home.

Access to counselling services in rural areas can be limited or non-existent. Often

the disability support staff end up as ‘accidental counsellors’ for the remaining
residents. Disability workers are generally not trained in how to counsel and
emotionally support people in such a situation, and therefore errors and mistakes
in judgement can be made, which may result in further distress. The need for
counselling is not limited to the residents, as both the deceased individual’s family
and co-workers may also require ongoing support following the loss of a relative or
a person they have developed a close attachment with after many years of
providing personal support.

Facilitating appropriate counselling for a person with an intellectual disability can

be difficult, particularly for individuals with limited receptive or expressive
communication skills. Open discussion about what happens towards the end of a
person’s life can also be stymied by family members, who still believe that their
ageing child is in need of constant protection or is incapable of understanding what
is occurring. A 'conspiracy of silence' has been reported; a situation in which the
family, workers and allied health professionals all avoid discussing the progression
of the terminal illness in front of the person with the disability. Tuffrey-Wijne
(1997) commented on this phenomenon where carers have a belief that the person
is unable to understand what is happening, and therefore the topic is simply
avoided to prevent distress. However, the failure to communicate and discuss what
is happening prior to the person passing away may then lead not only to confusion
in the person with the disability, but also result in a compounding of the grief
following the individual’s death (Blackman, 2003b).

Grief and loss is also often experienced following a change in housing. The
participants identified this issue with the items “Losing their ‘identity’ and
independence after moving into supported accommodation” and “loss of confidence”. As
the individual support needs of the ageing person increase, s/he is often not able to

219
remain in her/his own home, as not all rural disability services are able to provide
the necessary level of nursing care to enable this (see section 2.4.1.2 Ageing in
Place). This change results in ageing people with an intellectual disability having to
move into the next most suitable alternative accommodation, which in rural areas
is often a residential aged care facility, a Multi-Purpose Health Centre or even the
local hospital.

The underpinning philosophy of aged support services is fundamentally different

to disability services, with an emphasis upon care provision rather than
independent living training and skills development (see section 2.2.6 Australian
Funding of Disability and Aged Care Services). As such, when people move from a
disability service into an aged care service the skills and abilities that they still
maintain can be quickly lost when staff simply complete tasks for the individual
rather than assisting them to do it for themself. It is, therefore, possible to see how
the person’s sense of identity and independent living skills can diminish following
a move into an aged care environment.

5.4 Discussion of Question Three Issues

Participants from the Delphi Panel individually proposed a total of twenty- nine
different issues for the question “From an individual staff perspective, what are the main
issues you experience in providing support to someone with an intellectual disability who is
ageing?” The participants achieved a group consensus position, both in terms of
fact that all twenty-nine issues were considered to be important and also with
respect to their priority relative to each other. A large number of the items and
themes identified in Question Three overlapped with the previous two questions.
The top two items and four of the top ten issues identified by the participants both
related to funding issues, which have been discussed in greater detail earlier in
section 5.2.1 Funding. Four of the top eleven items pertained to issues of access to
appropriate services and facilities, which was examined in section 5.2.3 Access to
Services. Other issues previously identified and discussed included the theme of
Health Care, which was addressed in section 5.3 Discussion of Question Two Issues.
Question Three did prompt the participants to identify a number of specific issues

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pertaining to Time Constraints, and an item that related specifically to Family
Concerns.

5.4.1 Time Constraints

One of the themes identified in Question Three related to Time Constraints (see
section 4.2.3 Issues Identified for Question Three). The participants identified three
items relevant to this theme, ranging from the generic “Time Constraints”, through
to specific examples such as “Excessive Paperwork” and “Dealing with personal
frustration in not having sufficient time to meet individual needs”. These items primarily
related to the staff perception of there being an insufficiency of time to get the
necessary or desired work tasks completed. Complaints about ever increasing
expectations and workloads with respect to paperwork are certainly not specific to
disability organisations, let alone the sub-section of support services for ageing
people with intellectual disabilities. However, the past decade has seen a major
change for all disability services with respect to the amount of information that is
required to be kept regarding each individual.

The introduction of compulsory quality assurance through the Commonwealth

Department of Families, Housing, Community Services and Indigenous Affairs’
(FaHCSIA) Disability Employment Standards (DES) and the New South Wales
(NSW) Department of Ageing, Disability and Home Care’s (DADHC) Integrated
Monitoring Framework (IMF), has seen greater government demands on service
providers with regard to accountability (Farrow, 2008). The past decade has seen
disability organisations having to ensure that comprehensive paperwork and
client records are kept for daily progress notes, individual plans, skill training
programs, behaviour interventions, risk assessments for all activities, occupational
health and safety protocols, positive behaviour management practices, sleep and
seizure charts, nutrition and swallowing programs, and medical monitoring
amongst other requirements. While many services have kept some or all of this
type of information for many years, the mandatory nature of quality assurance
requires every provider to dedicate more time to meeting these paperwork
requirements.

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Another area that has seen a considerable increase in both legal demands and time
constraints for disability providers is Occupational Health and Safety (OH & S).
The 1993 Disability Services Act and the associated Disability Services Standards
specifically legislate for the rights of people with disabilities to be integrated and to
participate in their local community. However, this legislation is often in direct
conflict with the Occupational Health and Safety Act 2000 which mandates for all
people to be employed within minimal risk work environments (WorkcoverNSW,
2000). A significant part of working with people with intellectual disabilities is the
recognition of the person as an individual. Challenging behaviours and aggressive
outbursts can be commonplace, particularly within the group of people with
moderate to severe intellectual disabilities.

While these issues can be partially addressed with positive behavioural support
planning, it is impossible to completely eliminate such problems. The Occupational
Health and Safety Act 2000 refers to the need for employers to take all reasonably
practical steps to prevent injury to a worker (WorkCoverNSW, 2000). There has
been an argument put forward that as disability organisations are aware of the
challenging behaviours exhibited by clients, they should be able to reasonably
predict such incidents and therefore protect workers from any incidents of abuse
(Farrow, 2008). This situation now results in services having to complete
comprehensive and often excessive risk management paperwork on routine
activities to mitigate against a possible future claim.

Disability organisations are required to deal with these numerous new

complexities with respect to legislation and administration requirements by
government, but the increase in paperwork requirements has not been
accompanied by a similar increase in funding from government. Staff are therefore
required to try and complete the additional paperwork in the same amount of time
as previously allocated to a shift. However, staff are already experiencing pressure
to meet the increasing needs of ageing clients without receiving funding (see
section 2.4.1.2 Ageing in Place). This double impact of increasing paperwork

222
requirements and increasing needs of individuals, whilst receiving no extra
funding to complete either of these expected tasks, presents logistical difficulties
for both direct care staff and management. The result is to reduce the expected
goals to be achieved for the individual, which appears to directly contradict the
DADHC requirement for person centred planning (see section 2.5.3 Person Centred
Planning). The other alternative is that the staff have to complete these additional
written tasks in their own time. Either solution is undesirable, and demonstrate
why time constraints have been identified as presenting specific problems for
workers assisting ageing people with intellectual disabilities.

5.4.2 Family Issues

One of the issues in Question Three that the participants identified as important
was “Unrealistic family expectations” (see section 4.2.3 Issues Identified for Question
Three). Additional discussion regarding the issues associated with family and
friends is presented in section 5.5 Discussion of Question Four Issues. However, it is
worth recognising that one of the most significant dynamics for any individual
revolves around his/her personal relationships. People with intellectual disabilities
have seen major shifts in both policy and practice over the past fifty years such as
the introduction of the Disability Services Act in 1986 and associated Disability
Services Standards (Farrow, 2008). These procedural changes include very
significant alterations in the focus on the family support structure.

Only thirty years ago some parents in rural areas of NSW were still advised by
medical and government experts to send their young children, often under five
years of age, to specialist education and residential accommodation located in
larger regional centres (Margaret Kennedy, pers. comm., 1999). Visits back to the
family for these children then occurred on a scheduled basis and often only after
long periods of intervening time. It is not surprising, therefore, that the attachments
and familial bonds between individuals and their wider family unit can be
tenuous. Studies have indicated that formal support programs, such as early
intervention introduced in recent years, not only assist the individual with a
disability, but also provide beneficial outcomes for the wider family (Bailey, 2007).

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However, these programs were not normally available to most rural families of
people with intellectual disabilities who are now ageing.

Conversely, there are also a large group of people with intellectual disabilities who
never left the family home (Bigby & Pierce, 2008). In some circumstances, they
remain living with their ageing parents until such stage as the situation becomes
impossible to sustain, whereupon they move into a form of supported
accommodation (Llewellyn et al, 1999). This group of people often has had very
limited involvement with the wider community and have never spent time within
either respite or residential support services prior to a family crisis occurring. Daily
life was often structured around the needs of the person with the disability, with
considerable restrictions placed upon the activities in which the wider family unit
could participate (Werner, Edwards & Baum, 2009).

Many families have indicated that they still feel very profound guilt about choices
they have made, such as the decision to send a child away from home and into an
institutional care setting (Werner, Edwards & Baum, 2009). Service providers can
often experience a situation in which they have to support not only the ageing
individual, but also many other unresolved grief and loss issues within the family
unit. However, it is worth noting that some studies have shown a reduction in
levels of personal guilt in family members following a person with an intellectual
disability moving into a supported residential placement (Baker & Blacher, 2002).

The activities which the individual wishes to participate in can be stymied by the
family who believe that their ageing child or sibling is in need of constant
protection or is incapable of understanding what is occurring. This attitude is
reflective of a common belief within the wider community that people with
intellectual disabilities have lower functioning levels than actuality (e.g. McConnell
& Llewellyn, 2002). The expectations and beliefs of the family can be unrealistic
and based around emotional rather than factual viewpoints. Employees often have
to navigate a difficult path between the rights of the individual and the conflicting
wishes of their relatives. A lack of training in this area presents disability workers

224
with significant problems in knowing the correct way to respond to, and interact
with, the family.

5.5 Discussion of Question Four Issues

Participants from the Delphi Panel individually proposed a total of twenty- five
different issues for the question “What do you think are the main issues facing the
families and friends (including co-residents) of someone with an intellectual disability who
is ageing?” The participants achieved a group consensus position, both in terms of
fact that all twenty-five issues were considered to be important and also with
respect to their priority relative to each other. There were a number of over-arching
themes identified within the twenty-five issues, and they are discussed in greater
detail in the following sections with specific reference to key items. The issues
associated with the theme of Access to Services was previously discussed in section
5.2.3 Access to Services.

5.5.1 Ageing Parents

The theme of Family Issues was previously raised in section 5.4.2 Family Issues. The
theme of Ageing Parents (see section 4.2.4 Issues Identified for Question Four)
provides more specific information about the issues of how families cope with the
ageing not only of the person with the intellectual disability, but also the primary
carer. These problems were reviewed in section 2.4.1.2 Ageing in Place.

Two of the top four issues identified for Question Four by the participants were
“Ageing parents” and “Family concern about future planning as the person with the
disability may outlive the parents”. Many ageing people continue to look after their
adult children who have a disability (Bigby & Pierce, 2008; Heller & Factor, 1991).
However, people with disabilities are now consistently outliving their parents
(Planned Individual Networks, 2007) and, as such, there is a need for the wider
family unit to consider and plan carefully for what will happen following either the
death or incapacity of one, or both, parents. Research has shown that
comprehensive planning by the family is rare, and there is an element of resistance
to the process (Bigby, 2002a; Grant, 1989). In some situations, less than 50 percent of

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families had made appropriate future plans to meet the accommodation needs of
their child (Freedman, Krauss & Seltzer, 1997).

It was noted by Dowse, McDermott and Watson (2009) that many people with
disabilities appeared not to do any planning for the future. According to Grant
(1990), many ageing parents also struggle to make final decisions about what will
happen when they die, particularly in situations where options are limited. The
point at which ageing parents either die or become incapable of continuing to look
after their adult child can also occur when the person with the disability is in
middle-age or starting to age him/herself (Bigby, 2002a). The brothers and sisters
of adults with autism may also experience problems with maintaining care for their
sibling following the death of the primary caregiver (Orsmond & Seltzer, 2007).

The need for future planning is vital, as both the family and service providers have
to prepare the individual for a major change in daily living at the same time as the
person may be starting to experience a decrease in his/her functioning levels. It is
considered that proper and comprehensive planning by the ageing parents prior to
a crisis occurring is vital if people with disabilities are to successfully transition into
a new living environment (Smith & Tobin, 1989). However, the capacity and ability
of both government and service providers to respond in an appropriate and timely
manner is uncertain, even if the families do plan ahead (McCallion & Kolomer,
2003). The perspectives and views of ageing carers of people with an intellectual
disability were examined by Hussain and Edwards (2009). This research noted that
there was limited future planning occurring and restricted access to appropriate
retirement activities and specialist services in rural areas. It was also concluded that
one of the main concerns of the ageing carers was the lack of available supported
accommodation options in rural areas.

A crisis situation, in which the parents of a person with a disability are suddenly no
longer able to look after their child, presents accommodation services and their
staff with a very difficult scenario. The person is often suffering from grief
associated with the loss of a parent, as well as being disorientated after being

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moved from their familiar family home (Janicki et al, 1985). The wider extended
family is also busy with the various necessary legal requirements following the
death of a person, and the needs of their sibling with a disability can be overlooked
at this point. This situation leaves the disability workers, who may have limited or
no prior experience with the individual, as the main supports for the person with a
disability. Without appropriate forward planning, the transition of ageing people
with a disability into a supported accommodation can be problematic and
potentially traumatic for the individual, his/her family and support workers.

5.5.2 Understanding and Coping with Ageing

The second identified theme for Question Four was Understanding and Coping
with Ageing (see section 4.2.4 Issues Identified for Question Four). The participants
identified a number of issues surrounding the family and friends’ understanding of
what the ageing person with an intellectual disability was experiencing, and how
to assist the individual to cope with these changes. These items included
“Understanding and separating behavioural issues from physical/mental health issues”,
“Fellow residents not understanding what is going on (why the person has changed or
moved)”, “Lack of information for families to source services”, “Pressure on friends to cope
with changing personality and skills” and “Lack of acceptance of the ageing process”.

The ageing of people with intellectual disabilities is a relatively new issue to arise
within the community services sector and, as such, the policy frameworks and
support structures in Australia are still relatively immature (Bigby, 2002b).
Disability support staff do not always have extensive experience or knowledge of
ageing issues. Information packages and training opportunities relevant to ageing
with an intellectual disability, both for staff and family members, are generally not
yet well developed nor widely available in rural areas. Individuals with a disability
and their family often view the disability support staff as ‘experts’, and seek advice
and information from them. If the disability staff are not able to provide the people
they support with accurate and relevant information, either through its
unavailability or their own lack of knowledge, the individual with a disability and

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his/her family will struggle to understand and cope with aspects of the ageing
process.

While there are specific issues that impact directly upon people with intellectual
disabilities who are ageing, a greater level of interaction between the ageing and
disability providers may help to address aspects of this problem. Mainstream
ageing information packages and resources could be readily transferred to the
disability sector as a means of ensuring a greater understanding of the generic
processes of ageing and how to cope with changes as they occur. By appropriately
re-utilising existing materials developed for mainstream ageing issues, staff would
be able to provide individuals and their families with information on the topic. In
rural areas, collaboration and cooperation between existing ageing and disability
providers with respect to joint training opportunities is another mechanism
through which the sharing of key knowledge can be maximised (Mohr et al, 2002).

5.5.3 Increasing Care Needs

The final theme for Question Four (see section 4.2.4 Issues Identified for Question
Four) was Increasing Care Needs. There were a number of issues considered
important by the participants that related to the increasing care needs of the
individual, and how this impacts upon their family, friends and other residents.
These items were “Coping with increased support needs”, “Concerns about person’s
ongoing and increasing care needs”, “Clients with lower care needs miss out due to an
increased focus on person who is ageing”, “Friends experiencing depression themselves due
to worry about their own mortality”, “Impact upon closeness of relationship (affected by
dementia)”, “Residing within a complex with other people with disabilities compounds
personal problems for those who are ageing”, and “Increased reliance upon staff to facilitate
family contact (primarily through phone)”.

As detailed in section 2.4.1.1 Health Issues, people with intellectual disabilities

experience a higher number of health care needs than the mainstream population
(Kapell et al, 1998), but these health needs are often not appropriately addressed
and treated (Lennox & Kerr, 1997). Ageing is then often associated with a further

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increase in the incidence of care needs. People with intellectual disabilities around
the world already encounter significant inequality in accessing health care services
(Durvasula & Beange, 2001; Fisher, 2004; NHS Health Scotland, 2004) even before
the secondary factors of ageing start to emerge. It is, therefore, not a surprise that
the participants identified health and individual care needs as an important issue.
While there were some generic issues identified such as generally increasing care
needs, some of the specific items provide greater clarification of the difficulties
faced by the individual and the consequences of this upon his/her family and
friends.

A number of issues recognised by the participants related to direct and indirect

impacts that the ageing of a person with an intellectual disability has upon fellow
residents and friends. The lack of additional government funding for organisations
to support ageing people with intellectual disabilities has a natural consequence of
reducing the level of service available for other residents. If the overall level of
funding does not change but the minimum required level of staffing for one person
increases, it is inevitable that there must be a reduction in services elsewhere. This
issue is particularly relevant for disability services operating under a block grant
model of funding to support a group of people, as opposed to a situation where an
individual allocation of money is designated to each specific person.

This situation can translate to a fellow resident’s quality of life programs being
reduced in order to meet the care needs of the person who is ageing. Resources and
staff time are reallocated internally within the service, with some clients receiving
less support hours than expected in order for the disability organisation to
appropriately meet the increasing needs of another resident. At the same time, the
individual who is ageing will also experience a reduction in his/her own quality of
life programs, with the primary focus of service shifting to meet his/her personal
care needs.

A person with dementia will experience an increase in care needs associated with a
decline in memory and intellectual functioning (Brodaty, Draper & Low, 2003;

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World Health Organization, 1992), and these impairments can have a direct impact
upon friends. Decreasing capacities can result in a separation from family and a
loss of long-standing friendships. The person’s family, friends and the other
residents within the house can be impacted by symptoms of grief, both in terms of
the loss of friendship with a long term companion who may have dementia, and
also through knowledge of the individual’s impending death. In some situations,
individuals with an intellectual disability may have been cohabitating with the
same people for many decades (e.g. Dowse, McDermott & Watson, 2009;
Edmundson et al, 2005), and any changes to one resident will naturally have an
impact upon the other housemates.

Friends can experience depressive-type symptoms as a result of their grief and loss
and also with respect to the contemplation of their own mortality. A Client Services
Manager from a rural provider described a situation in which three women with
intellectual disabilities lived together for in excess of thirty years. This placement
eventually ceased when one of the residents developed dementia and suffered a
fall that resulted in hospitalisation. This lady was moved from the hospital into a
residential aged care facility in another town an hour away as this was the nearest
available bed. She passed away soon afterwards. The remaining women
experienced considerable grief and confusion both during the initial stages of the
individual’s dementia and her eventual residential aged care placement. They were
uncertain why their friend’s personality had changed and then why she could not
continue to live in their home (Nicola Chirlian, pers. comm., 15 December 2008).

The health and personal care needs of ageing people with an intellectual disability
usually focus upon the individual; however, his/her increasing support
requirements can also negatively affect co-residents, family and friendship groups.
Training for staff in this area is required in order to successfully support both the
individual and the wider group of family and friends.

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5.6 Discussion of Question Five Issues
Participants from the Delphi Panel individually proposed a total of twenty-five
different issues for the question “What do you think are the main issues or problems
facing a rural organisation that provides support to someone with an intellectual disability
who is ageing?” The participants achieved a group consensus position, both in terms
of fact that all twenty-five issues were considered to be important and also with
respect to their priority relative to each other. There were a number of over-arching
themes identified within the twenty-five issues, and they are discussed in greater
detail in the following sections with specific reference to key items.

5.6.1 Training and Staff Development

The first identified theme for Question Five related to training and professional
development (see section 4.2.5 Issues Identified for Question Five). The current
framework for the training of disability workers was detailed in section 2.6 The
Disability Sector Workforce. Three of the top five items, and nine of the twenty-five
issues identified by the participants for rural service providers, related to
knowledge, education and staff development. The top three issues were “Training
and education for both disability staff and generic aged care professionals”, “Recruiting
qualified and trained staff” and “Maintaining qualified and trained staff”. The remaining
six items included “Access to appropriate and relevant training for staff re ageing and
support for a person with a disability who is ageing”, “Mainstream aged care services not
understanding how to support someone with a disability”, “Lack of entry requirements into
the industry (such as a minimum of Cert III in Aged or Disability Care)”, “Lack of
understanding (and willingness to act) by medical profession (doctors and hospital staff)
regarding the ageing process for people with a disability”, “Lack of staff skill in utilising
and accessing those available mainstream services” and “Limited opportunities for staff
networking (e.g. cross pollination of ideas and knowledge)”.

The issue of training was raised briefly in section 5.2.2 Training Needs and will be
discussed in greater detail in section 5.7 Discussion of Question Six Issues, which

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specifically refers to the training and education goals for rural disability workers
and organisations. However, there are a couple of specific staff development issues
in Question Five that deserve closer examination. In particular, accessing and then
retaining qualified staff appears to pose significant difficulties for the rural
community services sector.

The interaction and support provided by staff has been identified as one of the key
factors in either positive or negative program outcomes for people with intellectual
disabilities (Mansell, 2005). In a 2009 Australian Council of Social Service (ACOSS)
study, 63 percent of organisations surveyed indicated that they encountered
difficulty in recruiting appropriately qualified employees. The rate of staff turn-
over can also be very high, with research showing up to 38.8 percent annually
(Australian Council of Social Service, 2009). A national study by the Australian
Services Union (2007), the largest union in the social and community services
sector, found that over 50 percent of respondents did not plan to still be employed
within the field in five years time.

The issue of both attracting and retaining appropriate staff is a problem that is
inherent to every workforce in every sector of Australian business. Staffing has
been identified as one of the four most significant factors in determining the quality
of service provision by disability organisations (Mansell et al, 2008). Disability
services, particularly those in rural areas, often do not have a considerable pool of
potential employees from which they can choose. This problem is then exacerbated
by the high turn-over levels of staff. Organisations are naturally reluctant to spend
their limited training money and resources on staff who are possibly going to leave
their employer within the next twelve months. Likewise, training needs to be
provided in a way that maximises the number of staff who are able to participate in
and benefit from it. However, the emergence of ageing and intellectual disability
presents a new problem for disability service providers with respect to recruitment.

The issue of ageing and intellectual disability was not recognised as being an
essential or core unit of accredited training within the Certificate III and IV in

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Disability within the Community Services Training Package CHC02 (Community
Services and Health Industry Skills Council, 2008b). It is this course that the
majority of individuals who have participated in accredited training would have
completed. A new training package was formally endorsed as the Community
Services Training Package CHC08 on 10 December 2008 (Community Services and
Health Industry Skills Council, 2008a), and accredited by the Vocational Education
and Training Accreditation Board on 23 February 2009. All training organisations
must have switched to the new training package by February 2010 (Community
Services and Health Industry Training Accreditation Board, 2009).

However, while the emerging issue of ageing and intellectual disability was
highlighted during the review phase prior to the ratification of the Community
Services Training Package CHC08, the problem was not fully addressed within this
new training package. The relevant ageing and disability training unit of
competency, “CHCDIS313A: Support people with disabilities who are ageing”, remains
as an elective unit that individuals can chose whether they wish to study or not
(Community Services and Health Industry Skills Council, 2008a). Therefore, even if
staff have completed an entry level course such as the Certificate III in Disability,
there is no guarantee that they will have any knowledge about ageing issues. This
situation means that disability organisations can employ an appropriately qualified
individual but one who has no experience or information about the issues of ageing
within people with intellectual disabilities.

The issue of staffing development, and indeed the professionalisation of the

disability sector as a whole, has been identified as a priority area by government,
peak bodies and non-government bodies (National Council of Social Service, 2008;
National Disability Services, 2008a). In order to respond to these problems, a
number of innovative projects have been formulated (Disability Professionals
NSW, 2007a; National Disability Services, 2009a). In particular, the emergence of a
professional organisation for disability workers in NSW is an exciting
development. Disability Professionals NSW was established in 2006 with a goal of
promoting professional development within the disability sector through the

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provision of opportunities for recognition, learning and connection (Disability
Professionals NSW, 2007b). A sister organisation, Disability Professionals Victoria,
has been in existence for a number of years, and a parent company called Disability
Professionals Australasia was incorporated in 2010. It is hoped that the
professionalisation of the disability sector will be achieved through organisations
such as Disability Professionals Australasia, with disability services having a more
reliable, consistent and better trained workforce to address issues such as ageing
and disability.

5.6.2 Funding
As has been discussed previously in section 5.2.1 Funding, the theme of appropriate
funding of service models and staffing is an important issue for disability
organisations. The participants identified a number of generic issues within
Question Five that could pertain to any disability service in either metropolitan or
rural regions of New South Wales (NSW). These items included “Care needs are
constantly increasing, whilst funding is not”, “Financial viability” and “Funding for new
equipment/home modifications”. However, there were also some specific issues that
do impact particularly upon rural disability support providers, and the participants
recognised the following items as being important: “Inflexibility in funding models
and structures”, “Appropriate funding models for smaller services without large numbers
of ageing clients” and “Cost in accessing services (travel costs and staffing costs)”.

Within rural areas of NSW, the number of disability and ageing services is often
very limited. The lack of other providers often results in disability organisations
having to provide a majority of services without the opportunity to seek expert
assistance or guidance from other support agencies. This problem manifests itself
through the economies of scale that can be achieved within larger or metropolitan
based services. A small rural organisation may have a limited total number of
clients. They cannot always effectively or efficiently co-service a number of ageing
clients together, as they may only have one person who is experiencing ageing
issues at that point in time.

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Similarly, if they are the only disability provider in the area, the organisation is not
able to collaboratively work with other agencies who may find themselves in a
similar situation. While there may often be an aged care facility of some form in the
local community, the major problems associated with ageing and disability
funding being split between different departments and different levels of both state
and Australian government makes collaborations between disability and ageing
providers on shared clients extremely difficult to coordinate.

It is worth noting that some providers believed the level of collaboration between
separate disability organisations has decreased substantially in the past ten years.
Previously, rural disability services would work together to achieve the best
possible outcomes for the clients, even if that meant transferring the funding to a
different organisation (Michael Barry, pers. comm., 8 February, 2010). However,
with the introduction of competitive tendering by government (e.g. Department of
Ageing, Disability and Home Care, 2009h), all disability organisations have been
placed in a position where they are forced to compete for limited funding with
their neighbour organisations. The introduction of competitive tendering was seen
by some providers as a major deterrent to collaboration and the main impediment
to the establishment of any joint programs (Michael Barry, pers. comm., 8 February,
2010).

The funding models provided by government do not seem to take into account
these discrepancies, with rural services expected to carry the additional costs
associated with servicing one person in isolation. There is no flexibility within the
government funding structures to account for this issue. Rural and remote
providers remain at a significant disadvantage in comparison to their city based
counterparts who are able to either work collaboratively with similar organisations
in their vicinity or have sufficient client numbers to be able to provide an efficient
independent ageing service model.

Rurally based disability organisations also face considerable costs and expenses
associated with their location. A large proportion of training and education

235
sessions are held in Sydney, Newcastle or a handful of larger regional centres. An
example of this problem can be seen with the locations for the Department of
Ageing, Disability and Home Care’s (DADHC) “Unit Costing Tool Training” held
in March 2009. There were four sessions scheduled outside the main cities of
Sydney, Newcastle, Wollongong and Gosford, with these sessions held at Port
Macquarie, Wagga Wagga, Grafton and Orange (Department of Ageing, Disability
and Home Care, 2009d). Services not located in these regional centres sometimes
needed to travel very substantial distances if they wanted to receive the training.
Government does usually attempt to repeat sessions and spread the training
locations around the state, however, it is simply not logistically or economically
possible to provide enough opportunities so that no rural service provider has to
travel.

Whilst there appears to be understanding by service providers that training and

information sessions cannot be held in every small town across the state, there does
not appear to be an equal willingness by the State Government to recognise that
many rurally based providers have increased expenses in travel costs and time
merely to attend. Many organisations have policies that reflect the
WorkCoverNSW (1997) recommendations for managing work related fatigue and,
as such, overnight accommodation is also required to attend one day training
sessions that involve more than two hours driving to reach the location.
Government will occasionally provide some travel cost reimbursement to rural
providers, however, this protocol appears to be more the exception than the rule.

The travel cost issue is also problematic in relation to client health and the
accessing of specialist medical services. In rural areas, travel to either a larger
regional centre or metropolitan area is normally required if a patient needs
specialist assessment, intervention or treatment. There are only a minority of
medical specialists who situate themselves outside of a few larger regional centres.
This situation results in the disability organisation incurring considerable costs
associated with the travel, as well as the staff expenses to support the person to
access the medical specialist. Examples of this problem can be seen with people in

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Armidale having to travel to Coffs Harbour, or people in Cobar travelling to Dubbo
for certain specialist treatments. These trips take approximately three hours by car,
so a one hour appointment requires a minimum seven hour shift to be rostered. If
the medical appointment is scheduled early in the morning, the travel usually has
to occur the previous night, and therefore more costs are incurred with overnight
accommodation.

Some services have attempted to overcome this problem by bringing the specialist
to their own town, rather than travelling away to see the specialist. As an example
of this approach, the Chief Executive Officer of a rural disability service provider
reported that they use the services of a Newcastle based psychiatrist who
specialises in dual diagnosis and intellectual disability issues. This psychiatrist is
flown to northern New South Wales on a six monthly basis, sees a full day’s listing
of clients from various disability organisations across the region, and then flies
back to Newcastle. The organisations in that region do not receive any support
from DADHC for this program, but the organisation found that it was less
disruptive to the individual and significantly more cost effective to bring a
psychiatrist to the region rather than take each individual to Newcastle (Kevin
Mead, pers. comm., 28 July 2009). Nonetheless, it is still considerably more
expensive than for equivalent metropolitan service providers who can access
specialist services in their immediate vicinity. It is also only possible to implement
this system if a sufficiently large client base is co-located. It is simply not viable,
either economically or time-wise, to fly in specialists to see just a couple of patients.

5.6.3 Access to Services

The generic problems associated with access to services for ageing people with
intellectual disabilities has been discussed in section 5.2.3 Access to Services.
However, the participants did identify a number of additional access issues that
presented specific difficulties for rural disability organisations. These issues
included “Aged cut-off for ACAT prevents people with disabilities accessing services”,
“Lack of mainstream services available to people with disabilities”, “Lack of specialist
services such as respite and day programs”, “No dedicated aged care facility for people with

237
intellectual disabilities”, “Availability of complementary services to our own”,
“Competition with the community’s focus upon the increasing needs of the generic aging
population”, “Lack of public transport”, “Distance to nearest appropriate services” and
“Overcrowding in the limited space available and lack of personal space”.

The rural regions, and particularly smaller country towns, do not have the same
range of community and health services as metropolitan areas. This lack of access
to support services manifests itself in many ways, with disability support
organisations often left to try and fill the void. As a consequence of the small
population base, there is usually only a small number of ageing people with an
intellectual disability within rural areas. It is not economically viable to have
specialist agencies in every town with only a limited number of clients; however,
the distance between many towns and their nearest region centre can be hundreds
of kilometres.

While services may be nominally available across New South Wales, if access to
them requires three hours of travel in each direction, realistically they cannot be
considered convenient or able to be used effectively or regularly. To compound the
problem, public transport is not readily accessible in many country areas, either
within the actual towns or between them. Rail and bus services are restricted, and
travel by air prohibitively expensive in the event that it is available. The solution to
the problem of isolation is often to either use generic services, in which a person
with an intellectual disability is inappropriately placed into a mainstream aged care
facility that may have no understanding or knowledge of disability issues, or
alternatively for the disability service to continue supporting the person to the best
of their ability. However, there are not always places available within mainstream
aged care facilities, and attempting to maintain the person’s placement at home can
have impacts upon both fellow residents and staff as no additional funding from
government is readily available to support the increasing needs.

The lack of support programs becomes even more frustrating when access to the
few available services in country areas may be stymied by the bureaucratic

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strictures of government. Whilst the Aged Care Assessment Team (ACAT)
guidelines do not specify a minimum age for eligibility (Department of Health and
Ageing, 2006a), service providers report that it is difficult to get someone under the
age of sixty-five prioritised for an initial assessment (Dowse, McDermott & Watson,
2009). The approach does not appear to be standardised across the state, however,
with some regions appearing to apply a different interpretation of the guidelines
(Nicola Chirlian, pers. comm., 31 August 2009).

An anomaly has been established recently with the development of specific

programs by DADHC for younger people with disabilities who are either currently
in, or at risk of entry into, residential aged care facilities. These programs are
currently focussed upon people aged under fifty (Department of Ageing, Disability
and Home Care, 2008b). The separation of those people over sixty-five years who
can more easily access Federally funded ACAT support, and those people under
fifty years who are eligible for NSW Government funded programs, leaves a large
group of people with disabilities between the ages of fifty and sixty-four who seem
to be unable to readily access any ageing services.

5.7 Discussion of Question Six Issues

Participants from the Delphi Panel individually proposed a total of twenty-six
different issues for the question “What do you think are the highest priorities in training
for staff who assist individuals with an intellectual disability who are ageing?”. The
participants achieved a group consensus position, both in terms of fact that all
twenty six issues were considered to be important and also with respect to their
priority relative to each other. The training of disability support staff was
previously discussed in section 2.6.1 Training for Disability Support Staff. While a
number of the items and themes raised by the participants have been discussed in
the previous sections of this Chapter, Question Six did identify several unique
issues which are discussed in greater detail in the following sections.

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5.7.1 Quality of Life
The first theme related to Quality of Life (see section 4.2.6 Issues Identified for
Question Six). The participants identified a number of specific training issues that
pertained to improving the quality of daily life for the ageing individual with an
intellectual disability. These included “Person centred planning”, and “Quality of life
management”. The concept of Quality of Life (QoL) and its relationship to people
with intellectual disabilities has been detailed in section 2.5.2 Quality of Life for
People with an Intellectual Disability. Providing individuals with a good quality of
life is an integral component of all disability service provision. Ensuring quality of
life for people with disabilities is written into the Principles and Applications
associated with the 1993 NSW Disability Services Act (Department of Ageing,
Disability and Home Care, 2008c). However, maintaining people’s quality of life as
they start to age and lose some of their skills presents a number of problems for
both disability services and their staff. One particular issue relates to the distinction
between the provision of services focussed upon meeting emerging health care
requirements and those that continue to address the individual’s social needs.

The introduction of QoL principles within the past decade has resulted in
intellectual disability services moving away from the historic provision of health
based programs towards the philosophy of social integration and inclusion. The
provision of health care support is part of the larger goal of obtaining a high
quality of life, rather than being considered the main priority itself (De Waele et al,
2005). As a person ages, it is not unexpected for her/him to experience an increase
in personal care needs and a decrease in some abilities. In such situations, there
needs to be a focus on meeting these emerging health and safety issues. However,
there also must be a balance to ensure that the meeting of these new care needs
does not come at the expense of QoL programs. Ageing of people with intellectual
disabilities can see a reversion to a health-care dominated medical model of
support, rather than maintaining the existing system of quality of life.

One of the most important aspects of maintaining the quality of life for ageing
people with disabilities is providing appropriate and relevant choices (Treece et al,

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1999). The current predominant philosophy within intellectual disability services is
one of individual empowerment, with a focus upon enhancing and expanding the
person’s involvement in making real decisions about his/her own life (Reinders,
2008). Meaningful choices is an inherent aspect of Person Centred Planning (PCP),
which was detailed in section 2.5.3 Person Centred Planning. PCP is a process
designed to support the family and disability support organisations to ensure that
the individual receives a service that is focussed on him/her, rather than just
medical and health requirements. As noted by De Waele et al (2005, p. 238),
“quality of care on its own, however, is absolutely not a guarantee for quality of
life”. Unless the individual is supported appropriately to maximise her/his
potential, overall quality of life cannot be considered to be optimal.

PCP, which provides a framework for ensuring that all activities and goals are
based around the individual needs of the person (O’Brien & O’Brien, 1998), is one
avenue that can assist both disability providers and staff in reaching the right
balance between quality of life activities and health needs programs. Achieving the
correct balance of essential new health care services and maintaining existing
personal programs will assist in maximising the quality of life of someone who is
ageing with an intellectual disability. The study’s participants’ recognition that
additional education was required in quality of life and PCP issues is important, as
this training would assist staff in the appropriate delivery of support to the target
group.

5.7.2 Medical Issues

A well identified trend associated with ageing is an increase in medical and health
related issues (see section 2.4.1.1 Health Issues). This theme has been identified a
number of occasions during the study, and again specifically in Question Six (see
section 4.2.6 Issues Identified for Question Six). A number of the main medical issues
associated with ageing and intellectual disability were detailed in section 2.4.1.1
Health Issues in Ageing with an Intellectual Disability. The participants identified the
need for greater training and knowledge of health problems including generic
“Medical management”, “Understanding medication and its effects” and “Understanding

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of health issues”, as well as more specifically focussed learning and information
programs concerning “Dementia” and “Diabetes”.

The majority of the medical issues identified by the participants as requiring

further knowledge relate to generic training needs. None of the items appear to
pertain specifically to issues associated with intellectual disability. While it is clear
from the participants that a greater understanding of medical issues is required
amongst disability support staff, it is not apparent that specialised disability
training is necessary for all the identified items. Access to community based
training courses which are held across rural NSW is one avenue through which
disability workers can gain a greater understanding of health issues such as
dementia and diabetes (e.g. Alzheimer's Australia, 2009; Diabetes NSW, 2009).
However, the issue of understanding the effect of certain medications cannot be as
simply addressed.

Training staff to better understand the role that medication plays in treating
various ageing-related symptoms must be provided by an appropriately
experienced and qualified practitioner. In rural areas, accessing such expertise is
not always easy. There would appear to be a couple of solutions to this problem. In
smaller towns, the local pharmacist or chemist, either in private practice or at the
hospital, may be able to provide generic information sessions to staff on the use
and impact of some common medications. Likewise, a local general practitioner or
representative from the regional Division of General Practice may be similarly able
to train disability workers in small groups.

One aspect of medication that requires more consideration is the role that direct
care staff play in its administration. A key unit within the Certificate III and IV in
Disability is the Administration of Medication; however, the participants’
recognition of the need for training in the actual effects of the medication, rather
than simply its administration, is an important one. A link between the provision of
medication and staffing levels has been established in some studies (Carlisle, 1997).
It has also been found that the attitudes of staff to the people they support, as well

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as the residence’s day to day work practices, are more closely aligned to the level of
medication given to ageing people than any actual symptoms of dementia (Wills et
al, 1997). Historically, medication has been administered inappropriately in some
settings purely as a mechanism for control of difficult individuals (Chenoweth,
1995) and it is deemed an illegal practice (Department of Ageing, Disability and
Home Care, 2009i). Appropriate training is very important amongst disability staff
to ensure that the use of inappropriate chemical restraint, accidentally or otherwise,
does not occur within the ageing cohort.

5.7.3 Personal Care Issues

The theme of personal care was identified as a key issue for participants in section
4.2.6 Issues Identified for Question Six. As a person with an intellectual disability
ages, it is likely that she/he will experience a decline in physical abilities (Beange,
McElduff & Baker, 1995). These issues have been discussed previously in section
2.4.1.1 Health Issues. The decline in physical capacity results in a need for greater
Occupational Health and Safety (OH & S) knowledge and specialist training in the
use of new equipment. The participants recognised the importance of these issues
with the items “OH & S and Manual Handling Training (how to provide appropriate
physical support)”, “Personal care needs”, “Dietetics (meal preparation, tube feeding etc)”
and “Specialist equipment usage”. OH & S for workers within the disability sector is
an issue that is currently receiving attention at State Government level.

A project aimed specifically at increasing organisational awareness of safety issues

and ensuring workplace health for workers has recently commenced across New
South Wales (National Disability Services, 2009b). This program has grown out of a
prior collaboration between representatives of WorkCoverNSW, the Department of
Ageing, Disability and Home Care (DADHC) and National Disability Services
(NDS) in 2005. This working party was established to examine the various
legislative requirements that disability services operated under and, in particular,
the discrepancies that existed between OH & S laws and the 1993 Disability Services
Act. This first project found particular need for resources in areas such as manual
handling (National Disability Services, 2007a). The fact that this project is only just

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being rolled out may explain why the participants still identified OH & S, and in
particular manual handling, as priority areas for staff training.

Another issue that impacts upon staff is the need to learn how to implement new
protocols and operate new equipment as they support ageing people with
intellectual disabilities. As the individual’s physical capacity decreases over time,
new technologies and support systems are required to maintain quality of life and
overall health. Studies have shown that the implementation of specialist equipment
and assistive technologies can significantly improve the day to day functioning of a
person, facilitating independence and the ability to continue to access his/her local
community (Hammel, Lai & Hellers, 2002). As an individual’s mobility decreases,
equipment to assist with manual handling, such as hoists and slings, are often
necessary to prevent worker injury (Jung, 2004).

There are also manual handling risks and associated preventative equipment
utilised in assisting people to transfer from beds to wheelchairs, or supporting
them with personal care issues, such as showering, toileting and dressing. The
process of implementing new technologies to address these issues can result in
major changes to how services operate, and extensive training is required to
support the staff in these new processes. Particularly in rural areas, there may need
to be a large number of operational changes for a very limited number of clients.

It is not only new equipment that requires additional training, but also new
systems. People with an intellectual disability may have been completely
independent with their eating and diet; however, as they age they may start to
experience dysphagia or specific dietary problems (Barr et al, 1999; Evenhuis et al,
2001). Staff are often required to seek out information on and then implement new
dietary plans and also may be required to assist with tube feeding or other similar
specialist equipment. The need to provide staff with both adequate resources and
knowledge is essential if these new systems and methodologies are to effectively
support the person to remain independent and to age successfully.

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5.7.4 Counselling Support
The problems associated with mental health were nominated previously as a key
issue during the research (see section 4.2.2 Issues Identified for Question Two), and
were again specifically identified as a theme in section 4.2.6 Issues Identified for
Question Six. Studies have shown that counselling support can be beneficial for
both parents and their children with an intellectual disability (Davis & Rushton,
1991). As people start to age, there is an increase in the incidence of major mental
and psychotic disorders (Thorpe, Davidson & Janicki, 2001). With considerable
demand upon the limited number of qualified mental health workers within rural
areas (Parliament of New South Wales, 2003), the direct support staff in disability
organisations often find themselves acting in the position of an ‘accidental
counsellor’. They are often required to provide emotional support not just to the
person who is ageing but also to the other residents and even the wider family. The
participants identified two primary training needs associated with counselling
support in “Understanding of emotional issues” and “Skills (such as counselling) in
supporting other service users/housemates in dealing with the ageing issues of their friend”.

Studies have shown that across Australia there is a lack of information, knowledge
and confidence in providing mental health support (Jorm et al, 2005). There is very
limited training received by disability staff in areas such as mental health or the
provision of basic counselling support to a client. It is not a compulsory unit within
either the Certificate III or IV in Disability Work (National Training Information
Service, 2009b; TAFE NSW, 2009). It is not a desirable outcome to have untrained
and inexperienced employees attempt to provide specialist counselling support to
people experiencing mental health issues such as depression. However, there is
also a need for direct care disability staff to gain a greater understanding of both
mental health and emotional issues, particularly if they are supporting people who
are ageing.

One possible solution that has been proposed incorporates aspects of ‘accidental
counsellor’ training into optional units such as CHCCS9A: Provide support services to
clients. Some counselling courses have been mapped already to this unit (Centre for

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Community Welfare Training, 2009). A training unit, in which a basic
understanding of counselling was incorporated, would provide staff with
guidelines and a framework to establish clear boundaries for their interactions with
clients and other stakeholders who may be exhibiting signs of mental health
distress. A recognition and understanding of the mental health issues is vital if staff
are to correctly identify and discriminate between new mental health problems,
factors directly associated with the ageing process, or issues around the existing
intellectual disability. A relatively recent training course that has become widely
available across New South Wales is Mental Health First Aid. This twelve hour
short duration program has been developed to specifically train front-line workers
to successfully identify and provide early intervention in the community based
support of people with mental illnesses (Mental Health First Aid, 2007).

The Mental Health First Aid course was found to be beneficial for staff, providing
them with an increased understanding of mental health problems, as well as
improved levels of confidence in the provision of appropriate assistance to people
with a mental health issue (Kitchener & Jorm, 2002, 2004; Sartore et al, 2008). Some
disability services have implemented this training for a proportion of their staff
(Julie Derley, pers. comm., 1 September 2008; Tina Purdon, pers. comm., 3
November 2008); however, priority has generally been given to those staff working
with people with an already identified dual diagnosis. Widespread participation in
this training may be one simple method through which all staff can gain a greater
confidence and knowledge base to assist them to support their client group more
effectively.

5.7.5 Generic Training Issues

There were a number of issues identified that fitted largely into the theme of
Generic Training Issues (see section 4.2.6 Issues Identified for Question Six). It was
considered that a number of these training needs could be successfully addressed
through the existing aged and disability training framework. These issues included
“Behaviour management”, “Understanding of the ageing process and stages that people
move through”, “Alternative communication methods”, “Understanding of different

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support needs at different stages of ageing”, and “Generic aged care courses for disability
service providers”.

It is perhaps strange that a large number of generic ageing or disability training

issues were considered by the participants to be important. The majority of these
training issues should have been addressed within the framework of the Certificate
III or IV in Disability, or Certificate III or IV in Aged Care. As 96.8 percent of the
participants had completed relevant post-school qualifications such as a Certificate
III or greater (see section 4.1 Demographic Characteristics of Study Participants), it is
reasonable to expect that the participants would have a good understanding of
what information and knowledge is imparted in these training sessions. It is not
clear with many of these items whether the participants were reporting the gaps in
the existing accredited training framework, or actually highlighting the aspects of
the courses that were particularly valuable for new workers to the field. This
confusion is an area that would benefit from additional research and consideration,
particularly in light of the recent release of the updated CHC08 Community
Services Training Package.

A trend in recent years within the Vocational Education and Training Sector has
been the use of ‘skill sets’ to supplement existing training (Department of
Education, Employment and Workplace Relations, 2009b). The National Quality
Council Training Package Development Handbook defines skill sets as either singular
training units, or logical clusters of training units, which are specified as a
mechanism to address an identified industry need without composing an entire
qualification by themselves (Department of Education, Employment and
Workplace Relations, 2007). Within the disability sector, the applicable skill set
within the new CHC08 Community Services Training Package to address the
ageing issues would be Disability work skill set – people with a disability who are older.
This skill set is composed of five units:
CHCAC412A: Provide services to older people with complex needs,
CHCAC416A: Facilitate support responsive to the specific nature of
dementia,

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 CHCAC417A: Implement interventions with older people at risk of falls,
CHCCS426A: Provide support and care relating to loss and grief, and
CHCDIS313A: Support people with disabilities who are ageing.
(Community Services and Health Industry Skills Council, 2008a)

This skill set would appear to successfully address a number of the generic training
needs identified by the participants. However, it appears that there is still concern
about not receiving a ‘full’ qualification. There is a perception that, as skill sets do
not provide the employee with a new Certificate III or IV, it is somehow of a lesser
value and, as such, staff are less enthusiastic to participate in this type of accredited
training (Martin Kingstone, pers. comm., 15 July 2008). This problem has been
recognised by the wider sector, with the Community Services and Health Industry
Training Council commencing a state-wide project in 2009 to communicate and
promote the use of skills sets. The goal of this project is to develop information
packages that will explain the roles and legitimacy of skill sets within the training
sector (Community Services and Health Industry Skills Council, 2009).

The participants also identified a number of training needs that, while they
impacted upon ageing and disability factors, were not specific to these issues. As
previously discussed in this section, it is not clear whether the participants were
reporting that the training they had received was lacking in these areas, or if they
were vital skills that all new disability workers should have. The identified items
included “Training in observation skills so that changes in client health can be detected
early”, “Attitude training (patience, empathy, consistency, ethics)”, “How to transition
people between services effectively”, “Comprehensive and accurate record keeping to assess
changes over time” and “Time management”. The last item, time management, is a
common training request in many areas of employment; however, its particular
significance for disability workers in light of the increasing paperwork
requirements was discussed in section 5.4.1 Time Constraints.

Staff skill and knowledge in areas such as observation and record keeping are vital
if services are to accurately track and evaluate the progression of ageing-related

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issues. The ability of disability organisations to successfully plan for the future
needs of their clients is often dependent upon the direct care staff ability to
successfully observe changes and to distinguish between existing disability related
issues and emerging ageing problems. An example of this problem was
demonstrated in 2006 in the evaluation of the Aged Care Innovative Pool Disability
Aged Care Interface Pilot (Australian Institute of Health and Welfare, 2006). The
South Australian based disability service provider, MINDA, developed a specific
tool called the Broad-Screen Checklist of Observed Changes (BSCOC) to measure
the clinical changes in a person with a disability as they age. The BSCOC assesses
the individual’s medical, physical, psychological and social skills, providing a
benchmark against which future changes can be considered. The BSCOC has been
recognised by NSW Health as an accepted tool for Aged Care Assessment Teams
(ACAT) to use as part of their evaluation of client needs (NSW Health, 2007).

Four of the pilot ageing and intellectual disability programs evaluated in 2006 used
the BSCOC, however, the report noted concerns that the information gained by
using this tool was dependent upon the observation skills of carers, and that there
was also low inter-rater reliability demonstrated by inconsistent scoring between
staff and services (Australian Institute of Health and Welfare, 2006). If tools such as
the BSCOC are to be used as part of the ACAT process, there needs to be
appropriate training for all staff in observation skills and record keeping in order to
help ensure that the information collected is both current and accurate.

The challenge of transitioning people between services primarily occurs when the
ageing issues of the individual means that the disability organisation can no longer
effectively or safely continue to support her/him. In rural and remote areas of New
South Wales, there are rarely specialist or alternative services that support ageing
people with intellectual disabilities. If the disability organisation is no longer able
to provide the appropriate level of support, the normal option is to try and access
generic aged care services. However, even if the individual is classified as eligible
by the ACAT, and if there is a suitable residential aged care facility in the town,
there is still a recognised shortage of aged care placements (Parliament of

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Australia, 2007). Therefore, there is no guarantee of an available bed in the
individual’s local community, even if the person is deemed eligible by the ACAT.
This situation means that ageing people with intellectual disabilities may be
relocated to the nearest available bed, which in rural areas may be in another town
a considerable distance away from their friends and family.

Managing this process can be extremely difficult for staff of both the disability
service and also the residential aged care facility. Staff at a rural disability service
described a situation in which an ageing lady with Down Syndrome and
increasingly serious health issues was moved to a residential aged care facility
approximately one hundred kms away from the town where she had lived for over
sixty years. She was isolated from her friends and family and could not understand
why she was not able to return to her home. The staff reported considerable
distress was experienced not just by the individual and her friends, but also by all
the staff involved (Julie Derley, pers. comm., 9 June 2009).

There are a limited number of training programs designed specifically to address

the issues of transition of clients between disability and ageing services. Rather
than trying to develop such a course, it would appear more effective for the ageing
and disability providers in rural towns to proactively work together in order to
plan for future transitions. This type of collaboration would assist both
organisations to prepare for the process of transitioning a person from one service
to another. It would also allow staff to be involved in planning how the individual
with the disability and friends can keep in contact in order to minimise the distress
experienced following separation.

The concept of attitude, values and ethics training within disability work is
important, but it can be hard for both services and staff to accurately quantify.
Shaddock, Hill and van Limbeek (1998) noted a linkage between personal value
systems and the rate of ‘burn out’ in disability workers; however, there is not a
significant amount of research or information about the relationship between
ethical decision making and factors that affect the personal values of staff in the

250
community services or social work sectors (Doyle, Miller & Mizra, 2009). The lack
of clearly defined ethical guidelines for the disability workforce has been
recognised within the sector in recent years and, in response to this problem, the
Australian Society for the Study of Intellectual Disability (ASSID) developed a
Code of Ethics for direct support workers.

This Code of Ethics was subject to national consultation and workshop reviews
prior to its launch, and it received support from organisations such as Disability
Professionals Victoria (Disability Professionals Victoria, 2007). The Code of Ethics is
composed of twelve principles designed to underpin professional conduct. It was
specifically written in a manner that would make it easily usable within accredited
training courses such as the Certificate III and IV in Disability Work (Australasian
Society for the Study of Intellectual Disability, 2007). The chairman of Disability
Professionals New South Wales indicated that this Code of Ethics has not yet been
widely distributed or incorporated into accredited training options in NSW (Kevin
Mead, pers. comm., 13 August 2008). It is therefore not surprising that the
participants identified ethics as an issue of concern. The Code is voluntary, but its
adoption into both accredited training and workplace inductions is perceived as
one simple mechanism through which some of the concerns of the participants
regarding attitudes and ethics can be successfully addressed.

5.8 Conclusion
The purpose of the current study was to identify the key issues facing the disability
services direct care staff with respect to the ageing needs of their clients. This was
achieved through a Delphi study of employees from across rural and regional New
South Wales. Chapter Five began with a comparison of the demographics of the
current study’s participants to the disability workforce statistics attained from
other sources. On the basis of the limited information available, it was considered
that the study’s participants were appropriately representative of the wider sector.

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This section was followed with a discussion of the results and new knowledges
obtained through the research for each of the six questions. A particular focus was
upon the rural and remote issues that face people with intellectual disabilities, their
family and friends, and also the disability organisations and staff that support
them. The key issues and themes that were discussed included such disparate
concepts as access to, and the suitability of, the current funding models; the
training needs of both internal staff and the wider support networks for people
with disabilities; access to appropriate and relevant ageing services; physical,
mental and psychological health issues; parental and family concerns; and work
restraints. The following chapter presents a series of recommendations based upon
these new knowledge areas and provides an overall summary to the current
project.

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 Chapter Six - Recommendations and Summary

Introduction
Chapter Six reviews the information and new knowledge identified in the
previous chapters. It begins with a discussion of priority areas in relation to the
ageing care needs for people with intellectual disabilities. These key issues,
developed from the findings of the Delphi Panel as detailed in Chapters Four and
Five, underpin the proposal of a series of recommendations for both training and
practice changes for the rural disability sector. Suggestions for further research that
would enhance and expand the findings of the current study are presented. The
chapter concludes with an overall summary of the project.

6.1 Discussion of Training Priorities

6.1.1 Accredited Disability and Aged Care Training
Unlike other Community Services areas, such as Child Care or Aged Care, there is
no sector-wide expectation of a minimum qualification for a person to be employed
by a disability organisation. There is currently a considerable push from
associations and peak bodies, such as Disability Professionals New South Wales
(DPNSW) and National Disability Services (NDS), to require all direct care workers
to obtain and maintain currency with CHC30408 - Certificate III in Disability. There
is an opportunity to then progress to completion of CHC40308 - Certificate IV in
Disability. These two courses from the new CHC08 Community Services Training
Package replace the older qualifications CHC30302 - Certificate III in Disability Work
and CHC40302 - Certificate IV in Disability Work from the previous CHC02
Community Services Training Package. However, there remains no necessity for
workers to have such a qualification to work within a disability service.
Appropriate qualification of all staff is highly regarded within the Department of
Ageing, Disability and Home Care’s (DADHC) Integrated Monitoring Framework,
but it has never been compulsory.

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It is possible to achieve widespread acceptance of mandatory accredited training in
the Community Services sector with Child Care being a prime example. To
underline this point, the demographic information showed that over 95 percent of
the direct care participants in the current study had obtained a relevant post-school
qualification in the area of disability work. As an essential component of
professionalising the disability sector, it would appear vital for all service
providers to collaborate to formally establish the Certificate III in Disability as the
minimum education entry point for disability workers. It is accepted that not all
potential employees will have this qualification when applying for a position,
particularly within rural areas. The industry expectation should be for all
employees to be enrolled in such training within three months of commencing
work.

The concept of adopting a minimum training requirement, however, requires the

disability services to recognise its value to them, both in terms of improved daily
support to the people they assist and to the overall professionalisation of the sector.
It is considered highly appropriate and necessary for the primary disability services
funding body, DADHC, to work closely with DPNSW and NDS in order to
establish a clear process and defined time-line for the introduction of mandatory
qualifications for working within the sector. Accessing such training in rural and
remote areas can be difficult, and there would also be a considerable cost impact
upon the disability service. The use of school based traineeships and the Australian
Apprenticeship system is one mechanism through which both access to, and the
costs associated with, providing training to workers can be mitigated. The
qualifications of Certificate III and IV in Disability are both included in the
approved apprenticeship list (Department of Education and Training, 2010). This
avenue enables disability organisations to gain free assistance through Australian
Apprentice Centres to support them in applying for and receiving incentive
assistance funding in training their staff (Commonwealth of Australia, 2007).

It must be acknowledged, however, that even if all workers within the disability
sector have a current Certificate III in Disability, there is still no guarantee that they

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will possess any knowledge or expertise in areas surrounding ageing. The structure
of the Certificate III and IV Disability courses within both the old CHC02 and the
new CHC08 Community Services Training Package means that an individual could
easily complete a qualification without undertaking any units that address the
issues of ageing and disability. These units remain as elective modules, and they
are only included at the discretion of the disability service provider and the
Registered Training Organisation.

The use of skill sets, and in this particular situation, the disability work skill set
People with a disability who are older, would appear the most appropriate solution to
the issue of staff having completed accredited training but not ageing-specific
accredited training. While ageing is an important issue for the overall disability
sector, it is not applicable to every person with an intellectual disability. As such,
not all staff will necessarily require ageing specific training, depending upon the
range of individuals they support. However, it is important that disability services
have at least some staff with experience and knowledge of ageing, as this issue will
impact upon most organisations over the next decade. It would be appropriate for
government to examine funding the provision of the disability work skill set People
with a disability who are older as a proactive approach towards addressing the
emerging problem. This training could be allocated on a pro-rata basis for all
disability services in New South Wales to ensure that each organisation has a
number of staff with the appropriate ageing skill set. It would be important to
ensure that the training is provided across a suitable variety of rural locations,
along with travel and replacement staff cost reimbursements to be made available
to recompense services that have to travel to participate.

The present project identified a number of training needs that could be classified as
being generic to the wider disability sector because they did not specifically relate
to the ageing problems associated with a person with an intellectual disability.
These issues included time management, observation skills, personal attitudes and
ethics, record management, behaviour management and alternative
communication methods. It is not clear from the responses whether these training

255
areas were considered particularly important to the participant, or if they were
issues that had not been appropriately addressed through existing education
models. An inspection of the Certificate III and Certificate IV in Disability
qualifications in the new CHC08 Community Services Training Package indicates that
the concerns of the study’s participants should largely be addressed through the
existing accredited training options. Generic training concepts, such as the
maintenance of records and informed observations, are specified as performance
criteria and required skills in the units CHCDIS323A Contribute to skill development
and maintenance and CHCDIS301A Work effectively with people with a disability
respectively.

The CHC30408 Certificate III in Disability qualification includes the mandatory unit
CHCICS305A Provide behaviour support in the context of individualised plans which
provides specific training for participants in behaviour management issues
(Community Services and Health Industry Skills Council, 2008a, p. 745). The first
key element of the core unit, CHCDIS301A Work effectively with people with a
disability, is “Demonstrate an understanding of the delivery of quality services for
people with disabilities” (Community Services and Health Industry Skills Council,
2008a, p. 523). Performance criteria 1.4 for this element is “Take into account personal
values and attitudes regarding disability when planning and undertaking work with people
with disabilities” (Community Services and Health Industry Skills Council, 2008a, p.
523). All staff who have completed a Certificate III in Disability should therefore
have had some training in values and attitudes as well as behaviour management.

The second key element of the core unit, CHCDIS301A Work effectively with people
with a disability, is “Communicate effectively with people with a disability”
(Community Services and Health Industry Skills Council, 2008a, p. 523). This
element specifically focuses on the identification of specific alternative and
augmentative communication systems and devices. In addition, while the unit
CHCDIS411A Communicate using augmentative and alternative communication
strategies is not a compulsory one within the Certificate III in Disability, the
packaging rules specifically recommend its inclusion in the overall qualification

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(Community Services and Health Industry Skills Council, 2008a, p. 68). Participants
in the Certificate III in Disability training must have undertaken at least one, and
probably two units specifically looking at communication issues for people with
disabilities.

There are two possibilities why the current study has identified priority training
areas that should have been addressed by accredited training. Although over 95
percent of the participants had undertaken accredited training, it is possible that
the results are a recognition that that their peers have not completed a Certificate
III or IV in Disability. The most recent demographic studies of the disability
workforce indicated that only about 30 to 50 percent of staff had completed
relevant training (Lime Management Group, 2006), so the participants may be
identifying training from which their fellow employees would benefit. The second
possibility is that the training provided by Registered Training Organisations
(RTO) in these priority areas is not sufficient or has failed to meet the needs of the
participants. In either case, it is strongly recommended that disability organisations
and RTOs carefully consider both the content of the units and the choice of
electives within any accredited training that is provided to support workers. The
identification of a number of priority areas such as time management, observation
skills, personal attitudes and ethics, record management, behaviour management
and alternative communication methods provides an excellent guideline about the
areas of accredited training that require particular focus and emphasis.

6.1.2 Collaborative Training Opportunities

This project identified a number of training priorities that could be successfully
addressed through collaborations between disability organisations and other
services. One of the most obvious examples of working together could occur
between the disability and ageing services that may be located within the same
rural community. There is considerable potential for residential aged care facilities,
Home and Community Care (HACC) services and disability organisations to
jointly coordinate and share training costs on issues of mutual benefit.

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These types of collaboration have not traditionally occurred between ageing and
disability services, as the issue of ageing in the population of people with
intellectual disability is a relatively recent phenomenon. There would appear to be
little impediment to collaborations between ageing and disability services
occurring quickly and easily. Nonetheless, it is possible that a coordinated state-
wide approach to the issue between the relevant industry associations National
Disability Services (NDS) and Aged Care Association Australia may assist to
successfully bring together the various rural organisations. It would be possible for
the two associations to develop a joint training agenda to address common
educational needs as a means of initiating greater interaction between the two
sectors.

The common training could be coordinated with state-wide organisations, such as

the Epilepsy Association of NSW or Alzheimer’s Australia, providing specialist
and relevant training for both the ageing and disability organisations. These
organisations will provide education programs in rural areas if sufficient need is
demonstrated; however, finding the minimum number of participants in rural
areas is not always easy for a single provider. By combining the personnel of
ageing and disability services the training may become financially feasible.
Additionally, once the connection has been made between the organisations within
a similar location, it is then possible for them to independently build the
relationship further if it is seen to be of mutual benefit. It may also be appropriate
to explore the use of relevant technology, such as video-conferencing and on-line
learning programs, to supplement face-to-face training.

The present project also identified the need for collaboration between the disability
organisations and local specialists. In particular, there appears to be great potential
for disability organisations to work closely with medical practitioners and allied
health professionals to achieve better outcomes for people with intellectual
disabilities. Cooperation between disability organisations and their local Division
of General Practice would be one simple method to assist in overcoming the
concerns expressed by participants regarding doctors either not understanding, or

258
not being interested in, the issue of ageing and intellectual disability. An example
of this type of collaboration has occurred between the New England Division of
General Practice and the regional disability organisations. This Division of General
Practice offers a program in intellectual disability to its members (New England
Division of General Practice, 2009a) which was developed in conjunction with local
service providers. While it is not possible to ensure that all medical practitioners
are interested in the issue of intellectual disability, the provision of such training
opportunities facilitates opportunities for those doctors who are willing to continue
to learn.

Similar collaborations between disability providers and other health services such
as the Hospital, Aged and Community Care Teams (ACAT), nursing staff,
counsellors, therapists and social workers could also be valuable in breaking down
the barriers between ageing and disability sectors. An artificial separation between
ageing and disability services has been established by the various levels of
government bureaucracy allocating funding through disparate departments. It
would appear that this divide can be overcome, at least partially, by collaborations
at a local level, and mutual training opportunities would appear an excellent way
to assist this process.

There is also considerable potential for addressing some specialist training and
knowledge areas by accessing local expertise from community resources, such as
chemists or pharmacists. One area of concern raised by the participants surrounded
medication use and its administration. A medical practitioner would be a suitable
expert to provide education programs on these issues; however, if this option was
not available for any reason, nurse practitioners or pharmacists at the local hospital
or chemist would be other very suitable collaborative training partners.

6.1.3 Local Training Opportunities

One of the findings of the current study was that the physical ageing issues
experienced by a person with an intellectual disability appear to mirror those of the
mainstream community. As such, there would seem to be little need for specialist

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intellectual disability specific training in the area of physical health. Instead, the
generic training that residential aged care facilities currently provide would be
suitable. This could be an opportunity for training to be conducted in conjunction
with local aged care providers. One method through which this training could
occur would be the induction process. Under Occupational Health and Safety (OH
& S) legislation, all companies across all sectors of business in New South Wales
must provide their new staff with appropriate induction into the workplace to
ensure their safety. These inductions sessions, usually held over a period of a few
days, must include all essential aspects of the individual’s expected work.
Experienced disability workers may benefit from attending relevant sections of
induction with a local aged care provider. This training could incorporate an
introduction to generic aged care issues such as managing physical health and
personal care needs.

Collaboration between aged care and disability providers through shared

attendance at sections of induction could be of considerable mutual benefit. A
reciprocal arrangement in which existing aged care staff attended disability
inductions could provide valuable information and knowledge about intellectual
disability issues for aged care employees. The ability of staff from both sectors to
interact, exchange ideas and learn from each other can only be of benefit for ageing
people with intellectual disabilities, irrespective of which service supports them or
where they reside.

6.1.4 Specific Mental Health Training Opportunities

The participants identified a number of items that related to the emergence of
mental health and cognitive functioning. These issues included depression, as well
as memory loss and personality changes associated with dementia. Other issues
included emotional problems such as grief following either the death of a close
friend or family member, or concerns following the recognition of their own
mortality. There is a level of difficulty for any staff member, no matter how
experienced, in differentiating between what is a challenging behaviour that stems

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from the existing intellectual disability, and what is a new action that may be a
response to an emerging ageing issue such as dementia or depression.

As a consequence of a lack of suitable mental health workers in rural areas,

disability staff often fall into a role of the ‘accidental counsellor’, a very difficult
situation in which an unqualified and inexperienced direct care worker can
potentially cause more harm than good in the longer term. Traditionally, direct
care staff have not received significant training in the fields of mental health, in
spite of the high incidence of dual diagnosis within the cohort of people with
intellectual disabilities. This lack of training presents a number of problems for staff
in both appropriately identifying and contrasting the emerging mental health
issues to the existing factors associated with the intellectual disability as well as
then successfully supporting the individual with these issues. The close linkages
between ageing factors and mental health issues such as depression, mean that a
focus upon mental health training for disability staff is of vital importance.

This training can be achieved successfully in one of two ways. Firstly, it would be
highly advantageous for all staff, both direct care and management, to participate
in the Mental Health First Aid training that is currently offered across New South
Wales. The course content includes detailed information about the symptoms,
causes and treatments for relevant mental health issues such as depression, anxiety
disorders and psychosis. Additionally, it provides practical guidance in how to
deal with mental health crises and what actions to take to assist an individual.
While it is not tailored to specifically cover ageing, the course does provide an
introduction for direct care staff to many of the issues identified in the current
study as presenting in ageing people with intellectual disabilities.

The second option for approaching the issue of mental health training occurs
through the selection and modification of accredited units within the Certificate III
and IV in Disability. As discussed in section 5.7.4 Counselling Support, there have
already been modified units developed that incorporate aspects of ‘accidental
counsellor’ training. An example of this situation is demonstrated with the unit

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CHCCS9A: Provide support services to clients. Some organisations have chosen to
incorporate specific counselling support content into this unit (Centre for
Community Welfare Training, 2009). Options such as this type of unit, in which an
introductory understanding of counselling is established, would provide direct
care staff with some guidelines and boundaries for supporting people who may be
experiencing mental health issues. This training will also assist staff members to
more easily differentiate between what are existing challenging behaviours
associated with the intellectual disability and what are new mental health related
problems.

It is important to recognise that this type of training should not be seen as a

replacement for appropriate and qualified mental health professionals. However,
in rural areas where there is a critical shortage of allied health workers such as
psychologists and counsellors, the frontline disability workers could serve as a very
useful adjunct to the established mental health framework. While the focus of this
study is upon the issues associated with ageing and intellectual disability, basic
mental health training as described above would be of benefit to the entire
disability sector. The high incidence of dual diagnosis within people with
intellectual disabilities, combined with the growing ageing dynamic of this cohort,
means that some form of mental health knowledge would be advantageous to all
employees in the sector.

There is also the secondary issue of providing counselling support to staff members
following the death of a client. Disability support organisations need to ensure that
they proactively implement an employee assistance program that provides for
counselling support services for the staff. While it is naturally up to each
organisation to determine how and what is offered under such a program, it is
considered that an ongoing relationship with a local counsellor needs to be
established prior to any crisis occurring. As an example of this approach, some
disability organisations have scheduled annual sessions with a counsellor for all
staff employed within group homes that have identified ageing clients. The
purpose of these meetings is to prepare their staff for the inevitable loss of a client

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that will occur at some point in the future (Narelle Marshall, pers. comm., 7 June
2007). This system also means that there is an existing relationship between the
staff members and the counsellor when the death does take place, which can assist
in the counselling process.

6.1.5 Emerging Needs Training Opportunities

The current study identified a number of problem areas in regard to direct care
staff ability to safely operate specialist equipment that are prescribed and
implemented to meet the emerging needs of their clients. Examples of these
problems include Occupational Health and Safety (OH & S) concerns with the
implementation of new hoists and other manual handling assistive devices as
people with intellectual disabilities lose some or all of their mobility. An
introduction to, and ongoing scheduled updates on, the use of specialist equipment
and health procedures, such as percutaneous endoscopic gastrostomies, or ‘peg’
feeding, to address medical problems would be appropriate for all staff.

As people with disabilities age, there is often an increase in their physical health
needs and a reduction in their physical abilities. In order to support the individuals
in a safe and effective manner, disability organisations have introduced specialist
assistive equipment such as hoists, sliding sheets, pressure beds, showering chairs
and lifting belts when a person is no longer capable of independent movement.
While staff are generally provided with manual handling education sessions as
part of their initial induction, regular updating of this training is required in order
to ensure that all disability workers continue to be competent in using workplace
technology.

There is also a need for ongoing specialist training in support procedures such as
peg feeding. While there is a continuing discussion within the medical community
upon the appropriate usage of peg feeding in people with dementia (Angus &
Burakoff, 2003; Hoffer, 2006; Murphy & Lipman, 2003), it is a practice that is still
occurring in disability services in New South Wales (NSW). This issue was
identified as a specific area of concern in the item Dietetics (meal preparation, tube

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feeding etc). As such, staff need to have training and knowledge to support people
who require this type of intervention. In particular, the focus of the training needs
to be in the actual workplace, with the specific equipment and procedures used on
a daily basis.

Disability organisations must also ensure that all procedural and equipment usage
sessions are provided by appropriately experienced trainers. There is a tendency
within some organisations for training sessions to be conducted by the most
convenient person, rather than the best qualified individual. This situation may
result in a trainer who is not very familiar or highly experienced in using the
specific equipment. It is recommended that specialist training in the correct and
proper usage of manual handling equipment is provided by either the supplier or,
if they are not qualified to do so, a physiotherapist or occupational therapist.
Likewise, it is desirable for specialist medical procedures training to be provided
by appropriately experienced registered nurses. It is acknowledged that access to
such individuals is not always easy in rural areas; however, at least an annual
refresher course for all staff should be achievable with careful advanced planning.

6.1.6 Quality of Life Training

The Panel identified the need for staff to have training in Quality of Life (QoL)
programming and Person Centred Planning (PCP) as a means of correctly
achieving a balance between the emerging aged care needs and the right to
participate in and enjoy existing activities. Studies have shown that PCP helps
people with disabilities to achieve higher quality of life across a variety of life
domains (Robertson et al, 2005a).

The New South Wales (NSW) Department of Ageing, Disability and Home Care
(DADHC) have recognised the need for PCP as an integral component of service
delivery for people with intellectual disability. In January 2009, DADHC released
an information package called Exploring and Implementing Person Centred Approaches
(Department of Ageing, Disability and Home Care, 2009e). This booklet was
distributed to all Community Participation providers across NSW in July 2009. The
purpose of this release was “in recognition of the central importance of person

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centred planning” (Department of Ageing, Disability and Home Care, 2009e, p. 3).
However, this booklet was not a comprehensive guide for the implementation of
PCP within disability organisations. In fact, the package specifically states: “The
guide is not a manual. It does not give step by step instructions” (Department of
Ageing, Disability and Home Care, 2009e, p. 5).

The information package was not accompanied by comprehensive training and

education programs to supplement and support the information contained within
it. There was some training for Community Participation providers in 2009;
however, these sessions were not extended to include other programs such as
accommodation. The focus of the booklet was also predominantly upon younger
people with intellectual disabilities and their transition from school to post-school
life (Department of Ageing, Disability and Home Care, 2009e). While DADHC’s
recognition of the importance of PCP mirrors the findings of the current study,
there remain a number of gaps surrounding the training and implementation of
this service philosophy, both widely across the disability sector and specifically
within the ageing cohort of people.

One of the main QoL training programs for disability support workers in NSW that
has undergone external testing for its effectiveness and efficiency is the Active
Support model that originated in the United Kingdom. The Active Support model
focuses upon the interaction style between the individual with the intellectual
disability and the support workers. The goal is to ensure that the support provided
to each individual is designed and enacted around a philosophy of active
participation and involvement in daily life. Trials of the Active Support training
have shown that it is associated with significant increases in individual
participation in both domestic and community based activities (Rhodes &
Hamilton, 2006; Stancliffe et al, 2005). It was concluded that
Active Support represents a highly cos t-effective intervention
because it yields better outcomes by using existing group-home staff
more effectively (not by increasing staffing). If the capacity to deliver
high quality Active Support training can be developed within
individual agencies and the disability service system, then such
training can be provided at a reasonable cost as part of ongoing staff
training efforts. (Stancliffe et al, 2005, p. ix)

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One of the advantages of the Active Support training model for rurally based
disability organisations is that it is established around the premise of internal
trainers conducting the sessions rather than external experts. The designated
internal staff have to participate in two days of classroom based training; however,
they then work with their fellow disability workers in the development of the
Active Support system (Stancliffe et al, 2005). This approach means that rural
disability organisations can effectively implement the Active Support model
without the expense of either bringing an entire team of trainers to the
organisation’s hometown, or alternatively sending large numbers of staff away to
attend training in the nearest capital city.

Another staff training program that is aimed at improving the quality of life of
people with disabilities is the Marte Meo method. Developed by Dutch autism
expert Maria Aarts in the 1970s, the name ‘Marte Meo’ is derived from Latin and
means “On One’s Own Strengths” (Aarts, 2008, p. 39). This model is based upon
supporting disability workers through video analysis of their interactions with
clients. As with the Active Support model, Marte Meo is designed to be overseen
on an ongoing basis by in-house staff rather than through external trainers. Marte
Meo has been the subject of studies around the world within different
environments and for disparate target groups, including infant care, mental health,
intellectual disability, youth detention facilities and dementia (Aarts, 2008).

The training model has been associated with a variety of positive outcomes, such as
improved communication and personal interactions, and overall levels of
engagement (e.g. Health Services Executive, 2008). It was first introduced into
Australia in 2006 by John Lord (Aarts, 2008), a senior psychologist with the NSW
Department of Ageing, Disability and Home Care (DADHC). The use of Marte
Meo with people with intellectual disabilities has been the subject of an ongoing
trial by DADHC within rural NSW since 2008 (Department of Ageing, Disability
and Home Care, 2009j), with reported benefits including substantial reductions in

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behavioural incidents and increased participation in community events (John Lord,
pers. comm., 12 April, 2010).

While there are other direct care training systems, the positive outcomes associated
with the Active Support and Marte Meo models, combined with their suitability for
rurally based disability services, would appear to successfully address the concerns
raised in regard to achieving the necessary balance in the provision of individual
support to ageing people with an intellectual disability. The cost effectiveness of
these styles of training is of particular relevance to remote service provision. It is
recommended that disability organisations, industry bodies and DADHC
collaborate to ensure that all rural services have access to QoL and PCP training,
with the Active Support and Marte Meo models being two possible cost effective
solutions.

6.1.7 Family Support Training Opportunities

A 2004 study in Australia forecast that by 2031 more than 50 percent of all carers
will be aged over sixty-five (National Centre for Social and Economic Modelling,
2004). While intellectual disability services are not directly responsible for this
ageing carer group, the problems associated with transitioning individuals from
their home to a supported residential setting following a family crisis means that
any support provided to carers will only benefit the organisation and their staff in
the longer term. In particular, proactively assisting ageing parents and the wider
family to plan for the future of their adult child with an intellectual disability can
reduce the stress and trauma associated with the eventual transition.

Groups such as Carers Australia have developed specific resources and provided
forums across both metropolitan and rural areas to inform and educate carers on
how to plan for the transition of a person with a disability into a supported
residential facility. The resources developed by Carers Australia (2006) included a
future planning checklist and an information pack about available services. The
Australian Government has similarly released a resource package designed to
inform carers about future planning issues (Department of Families, Housing,

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Community Services and Indigenous Affairs, 2007b). Also, the New South Wales
(NSW) Office of the Public Guardian provides state-wide information sessions on
legal issues relevant to people who are ageing or who have an intellectual disability
(NSW Office of the Public Guardian, 2009). The NSW Department of Ageing,
Disability and Home Care (DADHC) implemented a program called ‘Support Co-
ordination’ in 2007, with one element being the development of future planning
(Department of Ageing, Disability and Home Care, 2007c). However, the results of
the current study indicate a perception that many parents and carers in rural areas
are either still not aware of, unable to access, or are dissatisfied with, the future
planning resources that are available.

It would be advantageous for disability organisations in rural areas to coordinate a

visit from bodies such as Carers Australia or the Public Guardian in order to
increase ageing carers’ ability to plan successfully for the future and also enhance
understanding of the legal issues associated with this planning. An approach to
both state and commonwealth governments by relevant industry associations, such
as National Disability Services (NDS), to obtain funding for these information and
training sessions would be desirable as it would facilitate families to start future
planning.

A relatively recent development for carers of people with a disability relates to the
establishment of a Special Disability Trust by the Australian Commonwealth
Government. Special disability trusts were first introduced in 2006 to assist families
to put aside money with a goal of supporting either the current or future
accommodation and care needs of a direct family member with a severe disability.
The rationale for the establishment of these trusts was to prevent the family being
adversely affected by the rules on means testing (Department of Families, Housing,
Community Services and Indigenous Affairs, 2009c). However, while the
Government has provided a model trust deed for people to use in establishment a
Special Disability Trust, the Government then highly recommends that families
gain advice and support from an appropriately qualified and experienced solicitor

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to prepare the necessary paperwork and documentation (Department of Families,
Housing, Community Services and Indigenous Affairs, 2007a).

One strategy for disability organisations could be to coordinate an information

session for carers on wills, trusts and other legal issues and to invite local solicitors
to address the group. In rural and remote areas, training may need to be organised
through partnership arrangements with other community services, such as ageing
or mental health providers, in order to gain sufficient participants for the session to
run effectively. This approach will assist both the families and the disability service
to prepare and plan for the future needs of people with intellectual disabilities in
the local community.

6.1.8 Medical Practitioner Training

The minimal amount of disability specific training for medical practitioners is a
serious problem. It would appear difficult to include a significant amount of
additional content around ageing and intellectual disability into the current
schedule of medical training at an undergraduate level. The most suitable way of
addressing this issue would seem to be through a coordinated approach between
disability service organisations and their local Divisions of General Practice. For
example, the New England Division of General Practice provides a program for
doctors within the area specifically relating to issues of intellectual disability (New
England Division of General Practice, 2009a). This program could easily be
replicated with the support and cooperation of regional disability service providers
and their relevant Division of General Practice. Disability organisations could also
encourage the doctors who work with their clients to join the Australian
Association of Developmental Disability Medicine, which is a network of medical
practitioners who have a goal of improving the health outcomes for people with
disabilities (Centre for Developmental Disability Health, 2009).

Studies, such as the one by Johnston and Dixon (2003), indicate that a substantial
proportion of registered nurses have a negative attitude and minimal interest in
issues of intellectual disability. A comprehensive re-evaluation and review of the

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content of the various universities’ nursing curricula with respect to issues of
intellectual disability may be of benefit in establishing priority teaching areas with
respect to this area of nursing. There is a well established Professional Association
of Nurses in Development Disability Areas (PANDDA) which was formed in the
1990s to aid and guide registered nurses who work within the field of intellectual
and developmental disability (Professional Association of Nurses in
Developmental Disability Areas, 2009). Disability organisations may be able to
work in conjunction with PANDDA to highlight the important role that registered
nurses play in the health care of people with intellectual disabilities.

6.2 Recommendations from the Study

A series of key recommendations for government, disability organisations and
training entities have emerged from the findings of this Delphi study of disability
direct care workers from across rural and remote New South Wales (NSW). It is
worth noting that, while the inappropriateness of funding was clearly identified
within the survey as a key priority for attention on a number of levels, this issue is
already well recognised within the disability and wider community services sector.
A recommendation for additional funding for ageing issues is an obvious one and
certainly something that is very necessary. However, the other primary
recommendations from this study instead focus on a series of actions that can be
undertaken with minimal cost implications for any specific group and are not
contingent on substantial future government funding decisions. The focus of these
recommendations is upon interventions and models of support that can easily be
implemented and replicated within rural and remote areas of NSW.

6.2.1 Key Recommendation 1 – Mandatory Minimum Qualifications

For the primary disability services funding body in New South Wales (NSW), the
Department of Ageing, Disability and Home Care (DADHC), to work with
National Disability Services (NDS) and Disability Professionals New South Wales
in order to establish a clear process and defined time-line for the introduction of
mandatory minimum qualifications for all people working within the disability
sector. It is further recommended that this mandatory training requirement for staff

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members be incorporated in the Integrated Monitoring Framework audit of
services conducted by DADHC.

6.2.2 Key Recommendation 2 – Appropriate Accredited Training Options

For disability organisations and Registered Training Organisations (RTO) to
carefully consider both the content of the units and the choice of electives within
the accredited training that is provided to support workers. In particular, a focus
on the identified priority areas such as time management, observation skills,
personal attitudes and ethics, record management, behaviour management and
alternative communication methods would be highly appropriate.

6.2.3 Key Recommendation 3 – Funded Disability Work Skill Set

That the state and commonwealth governments fund the provision of the disability
work skill set People with a disability who are older as a proactive approach towards
addressing the emerging problem of proving appropriate support for ageing
clients. A focus on the identified ageing specific areas within this training would be
very appropriate. The Disability Skill Set training should be allocated on a pro-rata
basis for all disability services to ensure that every organisation has a minimum
number of staff with appropriate training. Travel and replacement staff cost
reimbursements should also be provided to recompense services that have to travel
to participate.

6.2.4 Key Recommendation 4 – Joint Training Agenda

That the two major peak bodies, NDS and the Aged Care Association Australia,
develop a joint training agenda to address common educational needs as a means
of initiating greater interaction between the two sectors.

6.2.5 Key Recommendation 5 – Better Networking

That disability organisations be proactive in establishing better networking models
with local specialists such as medical practitioners, allied health professionals and
pharmacists as a mechanism to raise awareness and understanding of the issues
associated with people with an intellectual disability who are ageing. Such an

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approach could be coordinated through local Divisions of General Practice or other
similar professional support associations.

6.2.6 Key Recommendation 6 – Greater Collaboration

That aged care and disability service providers who are located in close proximity
collaborate with respect to shared attendance at relevant sessions of their respective
induction processes.

6.2.7 Key Recommendation 7 – Mental Health First Aid

That all staff, both direct care and management, participate in the Mental Health
First Aid training currently offered across NSW.

6.2.8 Key Recommendation 8 – Accidental Counsellor Training

That disability service providers and Registered Training Organisations work
together on the development, selection and modification of accredited units within
the Certificate III and IV in Disability to successfully incorporate ‘accidental
counsellor’ training.

6.2.9 Key Recommendation 9 – Mandatory Annual Training

That all staff complete a mandatory annual update to their training to ensure
competency in using workplace technology, including manual handling equipment
and specialist medical equipment. This training should be conducted by an
appropriately qualified individual who may need to be external to the
organisation. Completion of this training by all staff should be an assessable item
within the DADHC’s Integrated Monitoring Framework assessment process.

6.2.10 Key Recommendation 10 – Future Planning Workshops

That the relevant industry bodies and disability organisations make
representations to state and commonwealth governments to obtain funding for
groups such as Carers Australia to conduct workshops across NSW for families to
assist them in their future planning.

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6.2.11 Key Recommendation 11 – Quality of Life Training
That disability organisations, industry bodies and state and commonwealth
governments collaborate to ensure that all rural services have access to Quality of
Life (QoL) training such as the Active Support or Marte Meo models.

6.3 Implications for Future Research

The current study has provided new knowledge regarding the priority areas for
training and support for disability workers who are assisting individuals who are
ageing. However, there is a considerable amount of information regarding the
training needs of ageing and disability support workers that remains to be
appropriately investigated, and these areas require further follow-up research to
properly clarify the problems. A number of suggestions for additional research
areas are detailed below.

6.3.1 Large Scale Study of the Rural Disability Workforce

6.3.1.1 Demographics
One of the major problems identified in the current study relates to the lack of any
comprehensive demographic data regarding disability workers within rural New
South Wales (NSW). Issues such as age, gender, years of experience, areas of
interest and expertise, and future intentions would all be valuable future studies of
the training requirements of staff across the entire disability sector. The Community
Services Workforce Profiling Project, as commissioned by the Community and
Disability Services Ministers’ Advisory Council, may address some of these issues,
but it is unclear whether this study will provide detailed information about the
disability sector in general and rural areas in particular.

In August 2009, the Australian Bureau of Statistics (ABS) commenced a survey of

financial and activity measures within the Community Services Sector with results
expected in mid 2010. This study, however, as with the previous ABS study
conducted in 1999/2000, was focused on the entire community services industry
and it is unlikely that it will contain detailed information about the disability
services workforce (Department of Ageing, Disability and Home Care, 2009f).

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A comprehensive set of demographic data of rural NSW disability services and
their workforces would be a particularly valuable project, with the findings helping
to underpin future research on employment issues. This project would also assist
disability organisations in their future workforce planning, facilitating their
capacity to effectively and appropriately recruit, train and retain qualified staff.

6.3.1.2 Training and Qualifications

As with the lack of generic demographic data for disability workers, there is
minimal information available regarding the current training status for the
disability sector in New South Wales (NSW). Over 95 percent of the participants in
the current study had post-school qualifications, which is much higher than what
would be expected from the limited demographic data available from 2005 and
2006. However, a significant push towards sector wide accredited training has
taken place in the past five years, and this change has meant that the studies
published were based upon data that may not accurately reflected the current
situation. A large scale study of the training and education that both rural and
metropolitan disability workers have undertaken would be valuable in planning
future training needs.

The current study identified a number of key training areas but it was not possible
to precisely determine why they were considered a priority for future education
programs. The study did not identify whether the participants were recognising
the need for training that had been of particular benefit to them, or conversely, if
they were prioritising training that they had not actually received. A
comprehensive analysis of what training disability workers have undertaken
would help to clarify these issues. Such a study would need to not just look at what
qualifications a person had obtained, but how current they were, and whether the
individual had also completed refresher courses to remain up to date with current
leading practice principles. It is possible that a disability care worker may have
completed a relevant university degree a few decades ago and therefore appear to

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be highly qualified but not actually have any knowledge of current operating
procedures.

6.3.1.3 Comparative Study of Rural and Metropolitan Service Provision

The focus of the current study was specifically upon the factors that affect service
provision within rural and remote areas of New South Wales (NSW). It would be
appropriate to conduct research within metropolitan areas of the state to examine
whether similar issues were evident and what additional or new factors emerged.
There are some issues specific to rural areas such as the extreme distance and time
factors in accessing appropriate support services. However, it would be
appropriate to examine how the views and perceptions of metropolitan based
disability organisations and their disability staff would compare to those gained
from the current rural cohort study.

One of the main issues that presented throughout the current research was the
ability of people to access appropriate services. In rural locations, access is
restricted due to the fact that many services and specialists simply do not exist in
the local area. This problem is a consequence of the smaller population bases
inherent to many rural and remote parts of NSW. However, it is worth
acknowledging that the mere presence of services does not necessarily imply
access. Informal feedback from disability providers in some of the larger regional
centres indicates that even if a specialist service is available, actually gaining access
to this service is often extremely difficult (Narelle Marshall, pers. comm., 11 March,
2008).

As discussed in section 5.2.3 Access to Services, many government provided services

were under-resourced and over-subscribed. This situation resulted in long waiting
lists and the prioritisation of entry. Therefore, even if the specialist options are
physically present within a city, there is no guarantee that any disability
organisation, whether urban or rural, are actually able to use its expertise in an
appropriate and timely manner.

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It is possible that many of the issues facing metropolitan service providers would
mirror those found in the current study. Similarities in the results of a future
project focussing on metropolitan services would help to confirm and reinforce the
findings of the current Delphi study and differences would assist in the
identification of issues specific to particular geographic areas of NSW. This
research would facilitate governments’ ability to more appropriately tailor service
delivery and training to the individual needs of locations across the state, rather
than simply providing generic options for every service in every region.

6.3.2 Training of Doctors and Allied Health Professionals

The data from this study indicates that many medical practitioners and allied
health care professionals in rural areas did not display a basic understanding of the
issues associated with ageing and intellectual disability. It was not clear from the
current research whether this perceived lack of knowledge was due to:
insufficient education during undergraduate studies,
lack of appropriate post university training programs,
limited exposure to people with intellectual disabilities,
reaction to either a personal or community reinforced prejudice against
people with intellectual disabilities, or
other unidentified reasons.

The training of doctors and allied health professions during both undergraduate
and postgraduate courses in intellectual disability issues is an area that would
benefit from considerable follow-up research and examination. Such a project
should identify the origins from where the identified problem may stem and also
propose possible solutions. A comprehensive review of the undergraduate and
postgraduate training programs for medical practitioners, nurses and allied health
staff within Australia would be a starting point for this research. This project
would ideally build upon the research of Lennox, Diggens and Ugoni (1997) and
Lennox and Diggens (1999), reviewing what changes have occurred in the period
since the publication of their work.

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A study by Denham and Shaddock (2004) found that rural allied health
professionals who worked in the disability field felt they lacked professional
development opportunities and were somewhat unsupported by both management
and peers. The findings of the current study, when considered in light of the
Denham and Shaddock research, may indicate an underlying lack of
understanding of the respective direct care and allied health roles. A review of
what postgraduate training and support opportunities are available for allied
health workers in rural areas would therefore appear appropriate as a means of
trying to bridge this possible divide.

An examination of the individual perceptions held by doctors, nurses and other

allied health staff towards people with intellectual disabilities may also be
valuable. This research could assist in determining whether personal or community
attitudes are actually hindering the provision of medical, nursing and health
support services to individuals with an intellectual disability.

6.3.3 Family and Community Needs

The focus of the current study was upon the perceptions of rural and remote direct
care workers with respect to the people they support who are ageing with an
intellectual disability. Although it was not their central focus, the direct care staff
identified a number of specific concerns relating to ageing parents and the wider
family networks (see section 5.4.2 Family Issues and section 5.5.1 Ageing Parents).
There has been very limited work conducted in rural areas of Australia that
considers the perspectives and needs of the family members and wider community
in regard to this issue. Research by Hussain and Edwards (2009) examined the
thoughts and views of ageing carers of people with an intellectual disability. This
narrative inquiry project interviewed adults who either had an intellectual
disability or were the ageing carer of a person with a lifelong disability. A number
of the issues raised by Hussain and Edwards confirmed the outcomes of the
current study, with problems such as access to services and health care clearly
identified. It was noted that there was only limited future planning occurring, with

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social events and networks being very important for both the individuals with a
disability and their ageing carers.

While Hussain and Edwards (2009) noted the importance of social networks, a re-
examination of what the term ‘social networks’ actually means for both people with
intellectual disabilities and their carers may be appropriate. For people with
intellectual disabilities, finding appropriate friendship groups can be extremely
difficult, and paid carers can sometimes be seen as default friends rather than as
support staff (Bigby et al, 2008). These issues may be just as personally relevant to
the ageing carers of people with disabilities, with the demands of providing
ongoing care resulting in similar issues of social isolation. There is a need to
distinguish accurately between the various elements of an individual’s social
network, rather than simply considering the network as a single entity. This
process would entail separating the over-arching structure of the network from the
daily functioning of the network’s different components. The structure of the social
network can be conceptualised in terms of the linkages between the various people
and groups in the network, while the roles and tasks they perform are considered
with respect to the actual support they provide (Phillipson et al, 2001).

Additional research that builds upon the 2009 work of Hussain and Edwards to
examine the issues directly facing both the ageing carers and wider family
networks of people with an intellectual disability would help to clarify and direct
the implementation of future programs. In particular, a research emphasis on
deconstructing the social networks of rural people and proposing how
opportunities for overcoming issues such as isolation and marginalisation may be
developed would be a beneficial way to evolve specific support programs for
people with intellectual disabilities as well as their ageing carers and family
members.

6.3.4 Research on Emerging Needs

Associated with longer life expectancy is a corresponding increase in mortality
from conditions such as heart disease, cancer (Jancar, 1990) and respiratory

278
problems (Durvasula, Beange & Baker, 2002; Hogg, Juhlberg & Lambe, 2007). Some
research is showing that approximately 10 percent of people with an intellectual
disability will become sick with a form of cancer that eventually will be the cause of
their death (Cooke, 1997). People with intellectual disability have an increased
likelihood of developing cancers such as testicular, pancreatic, ovarian, uterine and
skin, as well as retinoblastoma and brain tumours (Patja, Molsa & Iivanainen,
2001). Sub-groups of people with intellectual disability, such as those individuals
with Down Syndrome, are at increased risk of diseases such as leukaemia
(Goldacre et al 2004; Sullivan, et al, 2007). The prevalence of cardiac disease is
greater in people with intellectual disability (Draheim, 2006), and in one study was
found to be 14 percent, approximately 5 percent higher than the equivalent general
population (van den Akker, Maaskant & van der Meijden, 2006).

These changing health demographics have lead to an emerging and increasing

need for palliative care support for people with intellectual disabilities; however,
there are a number of issues that prevent this group of people accessing these
services (Tuffrey-Wijne et al, 2008). No research has been reported that examines
palliative care for ageing people with intellectual disabilities within rural and
remote areas of Australia. At the present time, there is considerable confusion
surrounding the responsibility for the provision of such care. The need for
appropriate and responsive palliative care for people with intellectual disabilities
will continue to increase in response to the growth in life expectancy. While the
participants in the current study did not specifically nominate palliative care as a
high priority, they did identify a number of issues associated with end of life care
and support that relate to such needs. Further research is required in this area to
begin to understand how to appropriately support people with intellectual
disabilities in their final stages of life.

6.4 Conclusion of the Present Study

As a consequence of improved access to health care services and better recognition
of the rights of individuals with intellectual disabilities, the past century has seen a

279
dramatic improvement in the life expectancy of this group of people. It is now
becoming the norm for a person with an intellectual disability to out-live their
parents and to experience similar age-related issues as the rest of the population.
These changes demonstrate the need to review organisational practices and how
direct care employees are trained to support the successful ageing of people with
intellectual disabilities. It is apparent that the over-arching government policy
frameworks do not readily support individuals, their family and disability support
organisations to provide appropriate and necessary assistance.

Workers in the disability sector are generally poorly remunerated and report
considerable frustrations in completing their daily work. However, these same staff
report that the satisfaction and joy they gain from making a positive contribution to
the lives of people with intellectual disabilities is a major factor in their decision to
initially join and remain within the disability workforce. As of 31 March 2010, no
study of rural and regional disability support workers in New South Wales (NSW)
has taken place to clearly establish what they require to support people with
intellectual disabilities to age successfully. The major aim of the current study was
to investigate the emerging issues surrounding individuals with an intellectual
disability who are ageing within rural areas of NSW and determine the
organisational practices and necessary training that will provide direct care staff
members with the requisite support and knowledge to assist this group of people
to age appropriately. To meet this aim, four specific objectives were formulated to:
examine the current models of service available for people with intellectual
disabilities as they age,
identify the major issues that direct care staff believe impact most upon their
capacity to provide appropriate support to the target group,
identify areas within the existing disability training and professional
support framework which do not currently provide direct care staff with the
necessary skills and knowledge to assist people with disabilities as they age,
and

280
 recommend specific solutions that can be implemented across rural and
remote NSW to address the issue of appropriately supporting people with
an intellectual disability who are ageing.

The current study has met the overall research aim and each of the four specific
objectives. The current aged care models of service for people with intellectual
disabilities were reviewed, and the existing training models for support staff were
examined. The project clearly identified a range of issues considered important
with respect to the ageing of people with intellectual disabilities and what factors
impacted upon the ability of direct care workers to provide the desired level of
support. The study has established a set of priority areas as perceived by a
representative sample of state-wide direct care workers employed within rural and
remote areas. These problems and issues were seen by the workers as the main
barriers preventing people with intellectual disabilities in rural areas from having
the same opportunities and rights as the rest of the mainstream ageing population.
A series of specific recommendations were formulated to address the problem
areas identified in the project. The knowledge gained through the current study
provides government departments, non-government agencies and registered
training organisations with new options to support direct care staff to continue in
their valuable work with people with intellectual disabilities who are ageing.

281
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 Appendix Contents Page

Appendix 1 - Letter of Invitation, Information Sheet and Consent Form ............................... 335
Appendix 2 - Introductory Letter and First Round Questionnaire .......................................... 339
Appendix 3 - Letter of Invitation, Information Sheet and Consent Form for The Ascent Group
Staff only ................................................................................................................................. 343
Appendix 4 - Introductory Letter and First Round Questionnaire for The Ascent Group staff
only .......................................................................................................................................... 348
Appendix 5 - Confidentiality Agreement between Principal Researcher and the Research
Assistant .................................................................................................................................. 353

Appendix 6 - Second Round of Delphi Questionnaire ............................................................... 355

Appendix 7 - Third Round of Delphi Questionnaire .................................................................. 362
Appendix 8 - Final Round of Delphi Questionnaire ................................................................... 375
Appendix 9 – Ethics Approval....................................................................................................... 382

334
 Appendix 1 - Letter of Invitation, Information Sheet and Consent
Form
School of Health
Armidale, NSW 2351,
Australia

Letter of Invitation
Dear _____,

As a disability professional who assists people with intellectual disabilities, I would

like to invite you to participate in a research project looking at the issues associated
with ageing. This study seeks to explore the specific age- related issues that
individuals with an intellectual disability encounter as they age, and what impact
this ageing has upon the training needs of the staff who support them. Further
information on the project is provided in the accompanying Information Sheet.

It is hoped that this study will give all participants an opportunity to express their
personal views and opinions. The results of the study will be presented to both
state and national government bodies such as the Department of Ageing, Disability
and Home Care, the Department of Family, Community Services and Indigenous
Affairs, the Department of Education and Training, and the Department of
Education, Science and Training. It will also be submitted to the Community
Services and Health Industry Training Advisory Board. A summary of the findings
will be provided to all participants.

Your participation and time is greatly appreciated. The survey should only take
around a maximum of thirty minutes to complete. If you would like any further
information, please do not hesitate to contact me. The contact details are contained
below.

If you are willing to participate, I would ask that you complete the attached
consent form and return it to me at the following address;

Stuart Wark
School of Health
University of New England
Armidale NSW 2351.

Yours,

Stuart Wark

335
 School of Health
Armidale, NSW 2351,
Australia

Information Sheet for Participants

This study seeks to explore the specific age-related issues that individuals with an
intellectual disability encounter as they age, and what impact this ageing has upon
the training needs of the staff who support them.
As a volunteer, you will be invited to participate in this research project by;
1. Completing a Delphi survey questionnaire to collect data to about the major
issues associated with the ageing of people with intellectual disabilities. A
modified questionnaire is then re-issued to all participants until a general
level of consensus on an issue is achieved. You have the right to withdraw
from participation at any point during the research project.
2. The questionnaires will be emailed to you. You can either choose to return
the questionnaire via email, or you can print it out and return it through the
normal postal service or fax.
3. This is a research project, and you do not have to participate if you do not
wish to. If you do not wish to be involved, you will not be affected in any
way, either personally or professionally.

All information will be stored confidentially. All records will be locked up for five
years. Then the records will be destroyed as per rules of the University for ethical
conduct of research. No personal details will be shared with any other parties. You
have the right to request that information you provide is not used in the research.

The aim of this project is to provide government and training authorities with
information regarding the issues of ageing and intellectual disability. It is not
perceived that there is any foreseen risk to any participant.

This project has been approved by the Human Research Ethics Committee of the
University of New England (Approval No. HE07/167, Valid to 12/11/2008)

If you have any questions about this survey, please do not hesitate to either contact
me via email at swark3@une.edu.au, or at the following postal address:
Stuart Wark
School of Health
University of New England
Armidale NSW 2351.
Phone : 040 867 3898

If you wish to speak with another person about this survey, please contact Dr Rafat
Hussain at the School of Health, University of New England on (02) 6773 3678 or
via email at rhussain@une.edu.au.

336
Should you have any complaints about this research, please contact the Research
Ethics Officer at the following address:

Research Services
University of New England
Armidale, NSW 2351.
Telephone: (02) 6773 3449 / Fax (02) 6773 3543
Email: Ethics@metz.une.edu.au

337
 School of Health
Armidale, NSW 2351,
Australia

Consent Form

Title: The changing training needs of staff who support people with intellectual disabilities
who are ageing

NOTE: This consent form will remain with the researcher for their records

I agree to take part in the University of New England research project specified
above. I have read the information sheet which I keep for my records. I
understand that agreeing to take part means that:
I am willing to be interviewed by the researcher
I am willing to make myself available for a further interview if required
I am willing to complete questionnaires asking me about the issues of
ageing and intellectual disability.
I understand that my participation is voluntary, that I can choose not to
participate in part or all of the project, and that I can withdraw at any
stage of the project without being penalised or disadvantaged in any
way.
I understand that any data that the researcher extracts from the
questionnaires for use in reports or published findings will not, under any
circumstances, contain names or identifying characteristics.
I understand that any information I provide is confidential, and that no
information that could lead to the identification of any individual will be
disclosed in any reports on the project, or to any other party.
I understand that data from the questionnaires will be kept in a secure
storage and accessible to the research team. I also understand that the
data will be destroyed unless I consent to it being used in future
research.
I (the participant) have read the information contained in the Information Sheet for
Participants and any questions I have asked have been answered to my satisfaction. I
agree to participate in this activity, realising that I may withdraw at any time. I agree
that research data gathered for the study may be published, provided my name is not
used.

Participant Name (please print) Date

Participant Signature

338
 Appendix 2 - Introductory Letter and First Round Questionnaire

School of Health
Armidale, NSW 2351,
Australia

Dear ____.

Thank you for agreeing to participate in this study, and taking the necessary time
to complete the questionnaires. There are around 50 participants from across NSW
taking part in the study.

The Delphi method, which is the basis for this research project, entails a series of
questionnaires being used to establish a consensus viewpoint from experts (the
Delphi Panel) within a specific sector. The responses from all participants for a
questionnaire are compiled, and then returned to the Delphi Panel to check for
agreement. You will be asked to rank the importance of the identified issues with a
simple five-point scale.

Each questionnaire should not take more than twenty minutes to complete, and
they may actually be completed in far less time.

In this case, you have been identified as an expert because you have particular
knowledge or interest in relation to the ageing of people with intellectual
disabilities, and the affect these changes have upon the staff that assist them. The
results from this study will be used to provide recommendations to training
organisations with a goal of enhancing the relevant ageing specific training
provided to staff in the disability sector. The results will also be provided to
government with a recommendation of allocating specific funding to address the
identified training priorities.

If you have any questions or queries, please do not hesitate to contact me via return
email (swark3@une.edu.au), or through regular mail at the following address;

Stuart Wark
School of Health
University of New England
Armidale NSW 2351.

Many thanks,

Stuart Wark.

339
 School of Health
Armidale, NSW 2351,
Australia

Dear ____,

Thank you again for agreeing to participate in this research project regarding the
issues associated with ageing and disability.

The purpose of this first questionnaire is to gain your opinion on the main issues
that face people with an intellectual disability as they age, and the impact these
changes have upon the staff that assist them.

I would ask that you read through the entire questionnaire before you start
responding. I am interested in your thoughts and ideas, however, I don’t expect
you to spend time doing research or looking up answers. I am interested in your
opinion and viewpoint based upon your experiences. There are no right or wrong
answers, but I would ask that you do not discuss your responses with any other
participants in the study that you may either work with or know are participating
in the study.

In particular, I am interested in your comments on each question, and what factors

you consider particularly relevant to the rural setting that you work in. Your
answers from this first questionnaire will utilised in the development of
subsequent questionnaires.

If you have any questions or queries, please do not hesitate to contact me via return
email (swark3@une.edu.au), or through mail at the following address;

Stuart Wark
School of Health
University of New England
Armidale NSW 2351.

Please return the completed questionnaire via email, or please print out your
answers and return it by mail to the above address.

Many thanks,

Stuart Wark

340
 School of Health
Armidale, NSW 2351,
Australia

Questionnaire No. 1
Background Information
Please complete the following information;

1. Age: _______________________________
2. Gender: _______________________________
3. Town where you work: _______________________________
4. Years working with people with disabilities: __________________
5. Training (please circle and also indicate course titles as relevant):

Secondary School

Year 12

Certificate I _______________________________

Certificate II _______________________________

Certificate III _______________________________

Certificate IV _______________________________

Diploma _______________________________

Advanced Diploma _______________________________

Bachelor Degree _______________________________

Post-Graduate Studies _______________________________

6. Are you a (please circle) :

Direct Care Worker

Manager
Trainer
Other (please nominate) _______________________________

341
 Instructions to Participants
Please read all the questions before beginning your responses. Also, please take as
much space as you need, and feel free to write as many issues as you feel relevant.
If you need more room, please feel free to add additional pages as required. Your
responses may fit into more than one category, so feel free to include them
wherever you considered appropriate.
1. What do you think are the main issues or problems that a person with an
intellectual disability will face as they age?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________

2. What are the main signs of ageing that you have seen in people with intellectual
disabilities (i.e. physical health issues,, social impacts, emotional issues, mental
health issues)?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________

3. From an individual staff perspective, what are the main issues you experience in
providing support to someone with an intellectual disability who is ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________

4. What do you think are the main issues facing the families and friends (including co-
residents) of someone with an intellectual disability who is ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________

5. What do you think are the main issues or problems facing a rural organisation that
provides support to someone with an intellectual disability who is ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________

6. What do you think are the highest priorities in training for staff who assist
individuals with an intellectual disability who are ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________

342
 Appendix 3 - Letter of Invitation, Information Sheet and Consent
Form for The Ascent Group Staff only

School of Health
Armidale, NSW 2351,
Australia

Letter of Invitation for Ascent Group Employees

As a disability professional who assists people with intellectual disabilities, I would
like to invite you to participate in a research project looking at the issues associated
with ageing. This study seeks to explore the specific age-related issues that
individuals with an intellectual disability encounter as they age, and what impact
this ageing has upon the training needs of the staff who support them. Further
information on the project is provided in the accompanying Information Sheet.

It is hoped that this study will give all participants an opportunity to express their
personal views and opinions. The results of the study will be presented to both
state and national government bodies such as the Department of Ageing, Disability
and Home Care, the Department of Family, Community Services and Indigenous
Affairs, the Department of Education and Training, and the Department of
Education, Science and Training. It will also be submitted to the Community
Services and Health Industry Training Advisory Board. A summary of the findings
will be provided to all participants.

Your participation and time is greatly appreciated. The survey should only take
around a maximum of thirty minutes to complete. To ensure the confidentiality
and privacy for Ascent staff members, I will be utilising the services of an
intermediary research assistant, Mr Martin Kingstone. Martin will coordinate the
distribution and collection of the questionnaires for Ascent employees. Martin has

343
completed a confidentiality undertaking to not disclose any information relating to
this study.

Martin will allocate an individual identifying number to each of the maximum of

five participants from the Ascent Group. This participant number will be used by
myself for the purposes of data collection, however, at no time either during or
after the project will I know the names of Ascent Group participants or what their
individual responses may have been.

If you are willing to participate, I would ask that you complete the attached
consent form and return it to Martin at the following address;

Martin Kingstone
Day Services
PO Box 18
Armidale NSW 2350

If you have any specific questions that you wish to ask in relation to this, please do
not hesitate to contact me at the following address;

Stuart Wark
School of Health
University of New England, NSW, 2351
Phone : 040 867 3898
Email : swark3@une.edu.au

Yours,

Stuart Wark

344
 School of Health
Armidale, NSW 2351,
Australia

Information Sheet for Participants from the Ascent Group

This study seeks to explore the specific age-related issues that individuals with an
intellectual disability encounter as they age, and what impact this ageing has upon
the training needs of the staff who support them.

As a volunteer, you will be invited to participate in this research project by;

1. Completing a Delphi survey questionnaire to collect data to about the major

issues associated with the ageing of people with intellectual disabilities. A
modified questionnaire is then re-issued to all participants until a general
level of consensus on an issue is achieved. You have the right to withdraw
from participation at any point during the research project.
2. The questionnaires will be given to you in a hard copy by Mr Martin
Kingstone. You will be asked to complete this form and return it to Martin
in a sealed envelope, either in person or through the normal postal service.
Martin will pass this sealed envelope onto me without opening it or reading
the contents.
3. This is a research project, and you do not have to participate if you do not
wish to. If you do not wish to be involved, you will not be affected in any
way, either personally or professionally. You may withdraw from
participation in the project at any time without consequences.

All information will be stored confidentially. All records will be locked up for five
years. Then the records will be destroyed as per rules of the University for ethical
conduct of research. No personal details will be shared with any other parties. You
have the right to request that information you provide is not used in the research.

The aim of this project is to provide government and training authorities with
information regarding the issues of ageing and intellectual disability. It is not
perceived that there is any foreseen risk to any participant.

This project has been approved by the Human Research Ethics Committee of the
University of New England (Approval No. HE07/167, Valid to 12/11/2008)

If you have any questions about this survey, please do not hesitate to either contact
me via email at swark3@une.edu.au, or at the following postal address:

345
Stuart Wark
School of Health
University of New England
Armidale NSW 2351.
Phone : 040 867 3898

If you wish to speak with another person about this survey, please contact Dr Rafat
Hussain at the School of Health, University of New England on (02) 6773 3678 or
via email at rhussain@une.edu.au.

Should you have any complaints about this research, please contact the Research
Ethics Officer at the following address:

Research Services
University of New England
Armidale, NSW 2351.
Telephone: (02) 6773 3449 / Fax (02) 6773 3543
Email: Ethics@metz.une.edu.au

346
 School of Health
Armidale, NSW 2351,
Australia

Consent Form for Ascent Group Participants

Title: The changing training needs of staff who support people with intellectual disabilities
who are ageing

NOTE: This consent form will remain with Martin Kingstone in a locked filing
cabinet.

I agree to take part in the University of New England research project specified
above. I have read the information sheet which I keep for my records. I
understand that agreeing to take part means that:
I am willing to make myself available for a further interview if required
I am willing to complete questionnaires asking me about the issues of
ageing and intellectual disability.
I understand that my participation is voluntary, that I can choose not to
participate in part or all of the project, and that I can withdraw at any
stage of the project without being penalised or disadvantaged in any
way.
I understand that any data that the researcher extracts from the
questionnaires for use in reports or published findings will not, under
any circumstances, contain names or identifying characteristics.
I understand that any information I provide is confidential, and that no
information that could lead to the identification of any individual will be
disclosed in any reports on the project, or to any other party.
I understand that data from the questionnaires will be kept in a secure
storage and accessible to the research team. I also understand that the
data will be destroyed unless I consent to it being used in future
research.

I (the participant) have read the information contained in the Information Sheet for
Participants and any questions I have asked have been answered to my satisfaction. I
agree to participate in this activity, realising that I may withdraw at any time. I agree
that research data gathered for the study may be published, provided my name is not
used.

Participant Name (please print) Date

Participant Signature

347
 Appendix 4 - Introductory Letter and First Round Questionnaire
for The Ascent Group staff only
School of Health
Armidale, NSW 2351,
Australia

Introductory Letter for each Ascent Group participant

Dear colleague,

Thank you for agreeing to participate in this study, and taking the
necessary time to complete the questionnaires. There are around 50
participants from across NSW taking part in the study.

The Delphi method, which is the basis for this research project, entails a
series of questionnaires being used to establish a consensus viewpoint
from experts (the Delphi Panel) within a specific sector. The responses
from all participants for a questionnaire are compiled, and then returned
to the Delphi Panel to check for agreement. You will be asked to rank the
importance of the identified issues with a simple five-point scale.

Each questionnaire should not take more than twenty minutes to

complete, and they may actually be completed in far less time.

In this case, you have been identified as an expert because you have
particular knowledge or interest in relation to the ageing of people with
intellectual disabilities, and the affect these changes have upon the staff
that assist them. The results from this study will be used to provide
recommendations to training organisations with a goal of enhancing the
relevant ageing specific training provided to staff in the disability sector.
The results will also be provided to government with a recommendation
of allocating specific funding to address the identified training priorities.

If you have any questions or queries, please do not hesitate to contact me

via return email (swark3@une.edu.au), or through regular mail at the
following address;

Stuart Wark
School of Health
University of New England
Armidale NSW 2351.

348
 School of Health
Armidale, NSW 2351,
Australia

Initial Questionnaire sent to Ascent Group Delphi Panel

Members

Dear colleague,

Thank you again for agreeing to participate in this research project regarding the
issues associated with ageing and disability.

The purpose of this first questionnaire is to gain your opinion on the main issues
that face people with an intellectual disability as they age, and the impact these
changes have upon the staff that assist them.

I would ask that you read through the entire questionnaire before you start
responding. I am interested in your thoughts and ideas, however, I don’t expect
you to spend time doing research or looking up answers. I am interested in your
opinion and viewpoint based upon your experiences. There are no right or wrong
answers, but I would ask that you do not discuss your responses with any other
participants in the study that you may either work with or know are participating
in the study.

In particular, I am interested in your comments on each question, and what factors

you consider particularly relevant to the rural setting that you work in. Your
answers from this first questionnaire will utilised in the development of
subsequent questionnaires.

If you have any questions or queries, please do not hesitate to contact me via return
email (swark3@une.edu.au), or through mail at the following address;

349
Stuart Wark
School of Health
University of New England
Armidale NSW 2351.

As mentioned in previous correspondence, Mr Martin Kingstone will be a research

assistant in this project and will act as an intermediary to ensure the confidentiality
and privacy of all Ascent employees. I would ask therefore that you complete the
questionnaire and seal it in the provided envelope, before returning it to Martin
Kingstone either in person, or via regular mail at the following address;

Martin Kingstone
Day Services
PO Box 18
Armidale NSW 2350

Many thanks,

Stuart Wark

350
 School of Health
Armidale, NSW 2351,
Australia

Questionnaire No. 1 for Ascent Group Participants

Background Information
Please complete the following information;

1. Age: _______________________________
2. Gender: _______________________________
3. Town where you work: _______________________________
4. Years working with people with disabilities: __________________
5. Training (please circle and also indicate course titles as relevant):

Secondary School

Year 12

Certificate I _______________________________

Certificate II _______________________________

Certificate III _______________________________

Certificate IV _______________________________

Diploma _______________________________

Advanced Diploma _______________________________

Bachelor Degree _______________________________

Post-Graduate Studies _______________________________

6. Are you a (please circle) :

Direct Care Worker

Manager
Trainer
Other (please nominate) _______________________________

351
 Instructions to Participants
Please read all the questions before beginning your responses. Also, please take as
much space as you need, and feel free to write as many issues as you feel relevant.
If you need more room, please feel free to add additional pages as required. Your
responses may fit into more than one category, so feel free to include them
wherever you considered appropriate.
1. What do you think are the main issues or problems that a person with an
intellectual disability will face as they age?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
2. What are the main signs of ageing that you have seen in people with intellectual
disabilities (i.e. physical health issues,, social impacts, emotional issues, mental
health issues)?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
3. From an individual staff perspective, what are the main issues you experience in
providing support to someone with an intellectual disability who is ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
4. What do you think are the main issues facing the families and friends (including co-
residents) of someone with an intellectual disability who is ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
5. What do you think are the main issues or problems facing a rural organisation that
provides support to someone with an intellectual disability who is ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
6. What do you think are the highest priorities in training for staff who assist
individuals with an intellectual disability who are ageing?
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________
_______________________________________________________________

352
 Appendix 5 - Confidentiality Agreement between Principal
Researcher and the Research Assistant
CONFIDENTIALITY AGREEMENT

th
THIS AGREEMENT is made on the 8 day November 2007
BETWEEN
Stuart Wark, UNE School of Health
AND
Martin Kingstone, research assistant

IT IS AGREED AS FOLLOWS
Mr Martin Kingstone has agreed to act as a conduit for employees (the disclosing party)
from The Ascent Group to participate in the proposed research project being conducted
by Dr Rafat Hussain, Dr Lyn Irwin and Mr Stuart Wark. The reason for Mr Kingstone
acting in this capacity is to ensure the anonymity of employees. Mr Kingstone will
distribute surveys and receive completed surveys in sealed envelopes. Mr Kingstone will
not open or view the contents of the sealed envelopes, and will not disclose to any other
party his coding methodology as specified in the Ethics application.
Mr Kingstone agrees to;
(a) keep all Confidential Information confidential unless strictly required
otherwise by law;
(b) not use Confidential Information in any way which would be harmful to the
best interests of the Disclosing Party;
(d) immediately notify the Disclosing Party of any disclosure required by law;
(e) not use any Confidential Information in any way other than for the Purpose
or as otherwise contemplated by this Agreement without the prior written
permission of the Disclosing Party;
(f) not copy, in whole or in part, any Confidential Information without the prior
written permission of the Disclosing Party; and

RETURN OF INFORMATION
At any time upon the written request of the Disclosing Party, Mr Kingstone must return to the
Disclosing Party any documents originating from the Disclosing Party which embody
Confidential Information and must not keep any copies in any form.

Confidentiality Agreement

This Agreement may only be amended in writing.

353
EXECUTED as an Agreement this ……………………. day of
………………….……………….2007

SIGNED by Mr Martin Kingstone )

in the presence of: )
)
…………………………………. ………………………………….
Signature of Witness Signature of Mr Kingstone

Research Assistant

…………………………………. ………………………………….
Name of Witness Name of authorised person
(block letters) (block letters)

SIGNED for and on behalf of THE )

SECOND PARTY )
in the presence of: )

…………………………………. ………………………………….
Signature of Witness Signature of authorised
person

Researcher
…………………………………. ………………………………….
Name of Witness Name of authorised person
(block letters) (block letters)

354
 Appendix 6 - Second Round of Delphi Questionnaire
Thank you very much for your responses to the first round of questions. I greatly
appreciate the assistance that you are giving me through completing this study.

The second stage of this study involves you re-examining your initial responses,
and also considering the views of the other participants in the study.

Please read the following answers for each of the six questions. They are the
responses of each individual respondent collated into one form. A lot of them are
very similar, however, I have tried to ensure that all variations are included.
However, when more than one person has written the same issue I have not
repeated it. They are not listed in any sort of priority; I have put them into
alphabetically order.

Could you please carefully re-read the main question, and then consider the
nominated responses from all participants. If the responses prompt you to consider
a new issue that hasn’t been mentioned, or if you disagree with any of the other
participant’s responses, please write them down with your reason (if you disagree).
If you require more space, please feel free to attach additional pages.

If you are happy with the provided responses, and don’t feel you wish to add
anything further, you do not have to respond to this stage of the survey.

If you do have some additional responses, could you please return them to me
either via email (swark3@une.edu.au) or through the below mailing address;

Stuart Wark
School of Health
University of New England
Armidale NSW 2351

I would like to have all responses back within two weeks so that we can start the
final round as soon as possible.

Many thanks again for your ongoing assistance with this project.

Cheers,

Stuart

355
1. What do you think are the main issues or problems that a person with an
intellectual disability will face as they age?

Access to specialist services such as gerontology and ACAT teams

Accessing appropriate equipment and aids
Accessing appropriate transport
Being able to retire and access appropriate recreation and leisure activities (day
programs etc)
Concerns about “what’s next” in their life
Confusion by staff and medical practitioners about what is ageing versus disability
issues
Correct diagnosis of issues by medical practitioners including mental health
Decrease in family support as immediate family is often also ageing (and dying
themselves)
Decreased communication skills
Decreased physical ability
Doctors (and allied health staff) not prioritizing medical attention for this group
General lack of understanding about the ageing process by staff
Getting used to new staff
Having appropriate housing to allow them to age in place safely
Having appropriate support services to allow them to age in place safely
Having appropriately trained and qualified support staff
Having to leave a house they have lived in for many years (and decades)
Hygiene (including managing incontinence)
Increasing support needs but no increased support (due to no funding increases)
Lack of appropriate facilities
Lack of understanding of disabilities within mainstream aged care services
Pension not meeting increased financial needs
Physical deterioration (hearing and sight) and emotional changes (depression)
Placement into mainstream aged care facilities that have no understanding of
disability
Specific medical conditions such as early on-set dementia, osteoporosis etc

356
2. What are the main signs of ageing that you have seen in people with intellectual
disabilities (i.e. physical health issues, social impacts, emotional issues, mental
health issues)?

Bullying towards other residents and staff

Changes in eating habits (inability to eat certain foods)
Communication problems
Decreased mobility
Deterioration in mental abilities
Disrespect towards staff
Greater support needs
Grief (loss of their own families and friends)
Hormonal issues
Incontinence (bladder and bowel)
Increase in inappropriate and/or aggressive behaviours
Increase in seizure activity
Increased simple and complex health needs
Isolation
Losing their ‘identity’ and independence after moving into supported
accommodation
Loss of confidence
Loss of memory
Loss of motivation
Mental health issues such as depression and dementia
Personal hygiene
Physical health issues (including sight and hearing deterioration)
Reduced desire to access services
Reduced desire to participate in activities
Reduced Productivity
Reduction in ability to access community independently
Reduction or loss of senses such as vision and hearing
Set in routine (resistant to change)
Specific medical conditions (e.g. urinary tract infections, cancer, diabetes and
dementia)
Stereotyping of others
Trips and falls
Weight gain
Withdrawal

357
3. From an individual staff perspective, what are the main issues you experience in
providing support to someone with an intellectual disability who is ageing?

Accessing appropriate professional support

Advocating for clients to get appropriate aged care services
Advocating for clients to get appropriate medical care
Assisting in increasing personal care needs (such as hygiene)
Being creative in using the funding to meet client needs
Blending the impact of ageing with issues already faced by people with
disabilities
Breaking bad habits that may become unsafe
Communication problems
Dealing with client frustration at not being able to do things
Dealing with personal frustration in not having sufficient time to meet
individual needs
Excessive paperwork
Gaining access to appropriate recreational and leisure activities in retirement
such as day services programs
How to assess independence
Lack of additional funding to meet increasing needs
Lack of appropriate venues for community access
Lack of government funding for appropriate staffing levels
Lack of government funding for staff training
Long distance travel required to see suitable medical specialists
Maintaining independence, health and well-being
Manual handling issues as clients lose mobility
Providing constant reassurance
Reduced acceptance of activities
Reduced concentration by the person
Reduced productivity by the person
Reduced stimulation levels
Time constraints
Unrealistic family expectations

358
4. What do you think are the main issues facing the families and friends (including co-
residents) of someone with an intellectual disability who is ageing?

Access to respite
Access to appropriate facilities to assist people with higher care needs
Ageing parents
Clients with lower needs miss out due to an increased focus on person who is ageing
Communication problems
Concerns about person’s ongoing and increasing care needs
Coping with increased support needs
Family concern about future planning as the person with the disability may outlive the
parents
Financial security and ongoing financial management
Friends experiencing depression themselves due to worry about their own mortality
Frustration
Household members reducing the person’s level of independence by attempting to ‘help’
by doing everything for them
Impact upon closeness of relationship (affected by dementia)
Increased pressure on families to provide ongoing advocacy
Increased reliance upon staff to facilitate family contact (primarily through phone)
Lack of acceptance of the ageing process
Lack of information for families to source services
Lack of patience (everyone wants everything done right now!)
Legal issues (e.g. making a will or power of attorney)
Need for major home renovations (e.g. stairs, ramps, rails etc)
Fellow residents not understanding what is going on (why the person has changed or
moved)
Pressure on friends to cope with changing personality and skills
The need for greater advocacy by the families to gain additional funding as support needs
increase
Understanding and separating behavioural issues from physical/mental health issues

359
5. What do you think are the main issues or problems facing a rural organisation that
provides support to someone with an intellectual disability who is ageing?

Access to appropriate and relevant training for staff re ageing and support for a
person with a disability who is ageing
Age cut-off for ACAT prevents people with disabilities accessing services
Appropriate funding models for smaller services without large numbers of ageing
clients
Availability of complementary services to our own
Care needs are constantly increasing, whilst funding is not
Competition with the community’s focus upon the increasing needs of the generic
ageing population
Cost in accessing services (travel costs and staffing costs)
Distance to nearest appropriate services
Financial viability
Funding for new equipment / home modifications
Inflexibility in funding models and structures
Lack of entry requirements into the industry (such as a minimum of Cert III in Aged
or Disability Work)
Lack of mainstream services
Lack of public transport
Lack of specialist services such as respite and day programs
Lack of understanding (and willingness to act) by medical profession (doctors and
hospital staff) regarding the ageing process for people with a disability
Mainstream aged care services not understanding how to support someone with a
disability
Maintaining qualified and trained staff
No dedicated aged care facility for people with intellectual disabilities
Recruiting qualified and trained staff
Training and education for both disability staff and generic aged care professionals

360
6. What do you think are the highest priorities in training for staff who assist
individuals with an intellectual disability who are ageing?

Ability to educate the general public about client abilities

Advocacy to act as the voice for people who are ageing and seek appropriate facilities
Alternative communication methods
Attitude training (patience, empathy, consistency, ethics)
Behaviour management
Comprehensive and accurate record keeping to assess changes over time
Dementia
Diabetes
Dietetics (meal preparation, tube feeding etc)
Generic aged care courses for disability service providers
How to transition people between services effectively
Medical management
OH & S and Manual Handling Training (how to provide appropriate physical
support)
Person centred planning
Personal care needs
Quality of life management
Skills (such as counselling) in supporting other service users/housemates in dealing
with the ageing issues of their friend
Specialist equipment usage
Time management
Training in observation skills so that changes in client health can be detected early
Understanding medication
Understanding of changes associated with ageing
Understanding of different support needs at different stages of ageing
Understanding of emotional issues
Understanding of health issues
Understanding of the ageing process and stages that people move through

361
 Appendix 7 - Third Round of Delphi Questionnaire
Third Round
Thank you very much for your responses to the first two rounds of questions. I
greatly appreciate the assistance that you are giving me through completing this
study.
The final stage of this study involves you rating the importance of each issue that
the study participants have identified for each question.

The issues are the responses from each individual participant from both the first
and second rounds. For the sake of simplicity, when more than one person has put
down the same issue I have not repeated it.

Please read each of the key issue statements carefully, and consider it with respect
to the over-arching question at the top of the page. For each of the statements,
please use the following scale and place a tick or mark into the box that reflects
how important you feel that issue is to yourself and your experiences as a disability
professional.

Scale
1 – Irrelevant
2 – Very unimportant
3 – Unimportant
4 – Neither important or unimportant
5 – Important
6 – Very important
7 – Critical

Once completed, could you please return this form either via email or post as per
the previous rounds.

Many thanks again for your ongoing assistance with this project. If you have any
questions or are not sure about anything, please don’t hesitate to either email me at
swark3@une.edu.au or via post at

Stuart Wark
School of Health
University of New England
UNE, Armidale 2351

Cheers,

Stuart

362
 1. What do you think are the main issues or problems that a person with an intellectual disability will face as they
age?

Please consider each of the below key issues in relation to the above question. For each of the below key issues, please
place a tick or mark into the box that reflects how important you feel that issue is to yourself and your experiences as
a disability professional.

Scale

Issues Irrelevant Very Unimportant Neither Important Very Critical

unimportant important or Important
unimportant

ccess to specialist services such as

gerontology and ACAT teams
Accessing appropriate equipment and aids
Accessing appropriate transport
Being able to retire and access appropriate
recreation and leisure activities (day
programs etc)
Concerns about “what’s next” in their life
Confusion by staff and medical
practitioners about what is ageing versus
disability issues
Correct diagnosis of issues by medical
practitioners including mental health
Decrease in family support as immediate
family is often also ageing (and dying
themselves)
Decreased communication skills
Decreased physical ability
Doctors (and allied health staff) not
prioritizing medical attention for this group
363
General lack of understanding about the
ageing process by staff
Getting used to new staff
Having appropriate housing to allow them
to age in place safely
Having appropriate support services to
allow them to age in place safely
Having appropriately trained and qualified
support staff
Having to leave a house they have lived in
for many years/decades
Hygiene (including managing
incontinence)
Increasing support needs but no increased
support (due to no funding increases)
Lack of appropriate facilities
Lack of understanding of disabilities within
mainstream aged care services
Pension not meeting increased financial
needs
Physical deterioration (hearing and sight)
and emotional changes (depression)
Placement into mainstream aged care
facilities that have no understanding of
disability
Specific medical conditions such as early
on-set dementia, osteoporosis etc

364
 2. What are the main signs of ageing that you have seen in people with intellectual disabilities (i.e. physical health
issues, social impacts, emotional issues, mental health issues)?
Please consider each of the below key issues in relation to the above question. For each of the below key issues, please
place a tick or mark into the box that reflects how important you feel that issue is to yourself and your experiences as
a disability professional.

Scale

Issue Statements Irrelevant Very Unimportant Neither Important Very Critical

unimportant important or Important
unimportant
Bullying towards other residents and staff
Changes in eating habits (inability to eat
certain foods)
Communication problems
Decreased mobility
Deterioration in mental abilities
Disrespect towards staff
Greater support needs
Grief (loss of their own families and
friends)
Hormonal issues
Incontinence (bladder and bowel)
Increase in inappropriate
p and/or
aggressive behaviours
Increase in seizure activity
Increased simple and complex health needs
Isolation
Losing their ‘identity’ and independence
after moving into supported
accommodation
Loss of confidence
Loss of memory
Loss of motivation

365
Mental health issues such as depression
and dementia
Personal hygiene
Physical health issues (including sight and
hearing deterioration)
Reduced desire to access services
Reduced desire to participate in activities
Reduced Productivity
Reduction in ability to access community
independently
Reduction or loss of senses such as vision
and hearing
Set in routine (resistant to change or even
more resistant than previously)
Specific medical conditions (e.g. urinary
tract infections, cancer, diabetes and
dementia)
Stereotyping of others
Trips and falls
Weight gain or weight loss
Withdrawal

366
 3. From an individual staff perspective, what are the main issues you experience in providing support to someone
with an intellectual disability who is ageing?

Please consider each of the below key issues in relation to the above question. For each of the below key issues, please
place a tick or mark into the box that reflects how important you feel that issue is to yourself and your experiences as
a disability professional.

Scale

Issue Statements Irrelevant Very Unimportant Neither Important Very Critical

unimportant important or Important
unimportant
Accessing appropriate professional support
Advocating for clients to get appropriate
aged care services
Advocating for clients to get appropriate
medical care
Assisting in increasing personal care needs
(such as hygiene)
Being creative in using the funding to meet
client needs
Blending the impact of ageing with issues
already faced by people with disabilities
Breaking bad habits that may become
unsafe
Communication problems
Dealing with client frustration at not being
able to do things
Dealing with personal frustration in not
having sufficient time to meet individual
needs
Excessive paperwork
Gaining access to appropriate recreational
and leisure activities in retirement such as
day services programs
How to assess independence

367
Ignorance and lack of respect by general
public towards client issues
Lack of additional funding to meet
increasing needs
Lack of appropriate venues for community
access
Lack of government funding for
appropriate staffing levels
Lack of government funding for staff
training
Lack of disability accessible parking spots
Long distance travel required to see
suitable medical specialists
Maintaining independence, health and
well-being
Manual handling issues as clients lose
mobility
Providing constant reassurance
Reduced acceptance of activities
Reduced concentration by the person
Reduced productivity by the person
Reduced stimulation levels
Time constraints
Unrealistic family expectations

368
 4. What do you think are the main issues facing the families and friends (including co-residents) of someone with an
intellectual disability who is ageing?

Please consider each of the below key issues in relation to the above question. For each of the below key issues, please
place a tick or mark into the box that reflects how important you feel that issue is to yourself and your experiences as
a disability professional.

Scale

Issue Statements Irrelevant Very Unimportant Neither Important Very Critical

unimportant important or Important
unimportant
Access to respite

Access to appropriate facilities to assist

people with higher care needs
Ageing parents
Clients with lower needs miss out due to an
increased focus on person who is ageing
Communication problems
Concerns about person’s ongoing and
increasing care needs
Coping with increased support needs
Family concern about future planning as
the person with the disability may outlive
the parents
Financial security and ongoing financial
management
Friends experiencing depression
themselves due to worry about their own
mortality
Frustration
Household members reducing the person’s
level of independence by attempting to
‘help’ by doing everything for them
369
Impact upon closeness of relationship
(affected by dementia)
Increased pressure on families to provide
ongoing advocacy
Increased reliance upon staff to facilitate
family contact (primarily through phone)
Lack of acceptance of the ageing process
Lack of information for families to source
services
Lack of patience (everyone wants
everything done right now!)
Legal issues (e.g. making a will or power of
attorney)
Need for major home renovations (e.g.
changing stairs to ramps, rails in
bathrooms, etc
Fellow residents not understanding what is
going on (why the person has changed or
moved)
Pressure on friends to cope with changing
personality and skills

Residing within a complex with other

people with disabilities compounds
personal problems for those who are ageing
The need for greater advocacy by the
families to gain additional funding as
support needs increase
Understanding and separating behavioural
issues from physical/mental health issues

370
 5. What do you think are the main issues or problems facing a rural organisation that provides support to someone
with an intellectual disability who is ageing?

Please consider each of the below key issues in relation to the above question. For each of the below key issues, please
place a tick or mark into the box that reflects how important you feel that issue is to yourself and your experiences as
a disability professional.

Scale

Issue Statements Irrelevant Very Unimportant Neither Important Very Critical

unimportant important or Important
unimportant
Access to appropriate and relevant training
for staff re ageing and support for a person
with a disability who is ageing
Age cut-off for ACAT prevents people with
disabilities accessing services
Appropriate funding models for smaller
services without large numbers of ageing
clients
Availability of complementary services to
our own
Care needs are constantly increasing, whilst
funding is not
Competition with the community’s focus
upon the increasing needs of the generic
ageing population
Cost in accessing services (travel costs and
staffing costs)
Distance to nearest appropriate services
Financial viability
Funding for new equipment / home
modifications
Inflexibility in funding models and
structures

371
Lack of entry requirements into the
industry (such as a minimum of Cert III in
Aged or Disability Work)
Lack of flexibility in daily lives due to set
routines and restrictive timeframes
Lack of mainstream services available to
people with disabilities
Lack of public transport
Lack of specialist services such as respite
and day programs
Lack of staff skill in utilising and accessing
those available mainstream services
Lack of understanding (and willingness to
act) by medical profession (doctors and
hospital staff) regarding the ageing process
for people with a disability
Limited opportunities for staff networking
(e.g. cross pollination of ideas and
knowledge)
Mainstream aged care services not
understanding how to support someone
with a disability
Maintaining qualified and trained staff
No dedicated aged care facility for people
with intellectual disabilities
Overcrowding in the limited space
available and lack of personal space
Recruiting qualified and trained staff
Training and education for both disability
staff and generic aged care professionals

372
 6. What do you think are the highest priorities in training for staff who assist individuals with an intellectual
disability who are ageing?

Please consider each of the below key issues in relation to the above question. For each of the below key issues, please
place a tick or mark into the box that reflects how important you feel that issue is to yourself and your experiences as
a disability professional.

Scale

Issue Statements Irrelevant Very Unimportant Neither Important Very Critical

unimportant important or Important
unimportant
Ability to educate the general public about
client abilities
Advocacy to act as the voice for people who
are ageing and seek appropriate facilities
Alternative communication methods
Attitude training (patience, empathy,
consistency, ethics)
Behaviour management
Comprehensive and accurate record
keeping to assess changes over time
Dementia
Diabetes
Dietetics (meal preparation, tube feeding
etc)
Generic aged care courses for disability
service providers
How to transition people between services
effectively
Medical management
OH & S and Manual Handling Training
(how to provide appropriate physical
support)

373
Person centred planning
Personal care needs
Quality of life management
Skills (such as counselling) in supporting
other service users/housemates in dealing
with the ageing issues of their friend
Specialist equipment usage
Time management
Training in observation skills so that
changes in client health can be detected
early
Understanding medication and its effects
Understanding of changes associated with
ageing
Understanding of different support needs
at different stages of ageing
Understanding of emotional issues
Understanding of health issues
Understanding of the ageing process and
stages that people move through

374
 Appendix 8 - Final Round of Delphi Questionnaire
Instructions to Participants
On the next few pages are six generic questions relating to the ageing of people with
disabilities. What follows each question is a prioritised list of the issues as identified
by direct care workers from across rural New South Wales.

Please read carefully through the list of identified issues. At the bottom of the page,
there will be a statement such as this;
I believe that the above list accurately reflects the main issues or problems
that a person with an intellectual disability will face as they age.
Underneath this statement will be the following five point scale.

1 – Completely Disagree
2 – Disagree
3 – Neither Agree or Disagree
4 – Agree
5 – Strongly Agree

Please indicate your level of agreement with the statement by either bolding or
highlight your desired response if you are returning via email, or circle/tick your
answer if you are printing this questionnaire and returning it via postal mail.

If you have any questions, please do not hesitate to get in touch with me through any
of the contact details provided in the introduction.

375
Question Number One - What do you think are the main issues or problems that a person
with an intellectual disability will face as they age?

1. Increasing support needs but no increased support (due to no funding increases)

2. Correct diagnosis of issues by medical practitioners including mental health
3. Having appropriately trained and qualified support staff
4. Placement into mainstream aged care facilities that have no understanding of
disability
5. Access to specialist services such as gerontology and ACAT teams
6. Confusion by staff and medical practitioners about what is ageing versus disability
issues
7. Pension not meeting increased financial needs
8. Doctors (and allied health staff) not prioritizing medical attention for this group
9. Having appropriate support services to allow them to age in place safely
10. Having appropriate housing to allow them to age in place safely
11. Lack of understanding of disabilities within mainstream aged care services
12. Being able to retire and access appropriate recreation and leisure activities (day
programs etc)
13. Physical deterioration (hearing and sight) and emotional changes (depression)
14. Accessing appropriate equipment and aids
15. Decreased communication skills
16. Decreased physical ability
17. Lack of appropriate facilities
18. Specific medical conditions such as early on-set dementia, osteoporosis etc
19. General lack of understanding about the ageing process by staff
20. Decrease in family support as immediate family is often also ageing (and dying
themselves)
21. Hygiene (including managing incontinence)
22. Accessing appropriate transport
23. Having to leave a house they have lived in for many years/decades
24. Concerns about “what’s next” in their life
25. Getting used to new staff

I believe that the above list accurately reflects the main issues or problems that a
person with an intellectual disability will face as they age.

1 – Completely Disagree
2 – Disagree
3 – Neither Agree or Disagree
4 – Agree
5 – Strongly Agree

376
Question Number Two - What are the main signs of ageing that you have seen in people with
intellectual disabilities (i.e. physical health issues, social impacts, emotional issues, mental
health issues)?

1. Greater support needs

2. Increased simple and complex health needs
3. Isolation
4. Mental health issues such as depression and dementia
5. Deterioration in mental abilities
6. Loss of memory
7. Communication problems
8. Trips and falls
9. Incontinence (bladder and bowel)
10. Specific medical conditions (e.g. urinary tract infections, cancer, diabetes and dementia)
11. Set in routine (resistant to change or even more resistant than previously)
12. Changes in eating habits (inability to eat certain foods)
13. Decreased mobility
14. Grief (loss of their own families and friends)
15. Loss of motivation
16. Losing their ‘identity’ and independence after moving into supported accommodation
17. Reduction in ability to access community independently
18. Withdrawal
19. Reduction or loss of senses such as vision and hearing
20. Weight gain or weight loss
21. Physical health issues (including sight and hearing deterioration)
22. Loss of confidence
23. Increase in inappropriate and/or aggressive behaviours
24. Reduced Productivity
25. Personal hygiene
26. Reduced desire to participate in activities
27. Reduced desire to access services
28. Increase in seizure activity
29. Hormonal issues
30. Stereotyping of others
31. Bullying towards other residents and staff
32. Disrespect towards staff

I believe that the above list accurately reflects the main signs of ageing that you
have seen in people with intellectual disabilities (i.e. physical health issues, social
impacts, emotional issues, mental health issues).

1 – Completely Disagree
2 – Disagree
3 – Neither Agree or Disagree
4 – Agree
5 – Strongly Agree

377
Question No. Three - From an individual staff perspective, what are the main issues you
experience in providing support to someone with an intellectual disability who is ageing?

1. Lack of government funding for appropriate staffing levels

2. Lack of additional funding to meet increasing needs
3. Advocating for clients to get appropriate medical care
4. Gaining access to appropriate recreational and leisure activities in retirement such as day
services programs
5. Being creative in using the funding to meet client needs
6. Accessing appropriate professional support
7. Lack of government funding for staff training
8. Maintaining independence, health and well-being
9. Blending the impact of ageing with issues already faced by people with disabilities
10. Manual handling issues as clients lose mobility
11. Advocating for clients to get appropriate aged care services
12. Communication problems
13. Dealing with personal frustration in not having sufficient time to meet individual needs
14. Assisting in increasing personal care needs (such as hygiene)
15. Time constraints
16. How to assess independence
17. Long distance travel required to see suitable medical specialists
18. Unrealistic family expectations
19. Dealing with client frustration at not being able to do things
20. Excessive paperwork
21. Breaking bad habits that may become unsafe
22. Lack of appropriate venues for community access
23. Providing constant reassurance
24. Reduced concentration by the person
25. Reduced stimulation levels
26. Ignorance and lack of respect by general public towards client issues
27. Reduced acceptance of activities
28. Reduced productivity by the person
29. Lack of disability accessible parking spots

I believe that the above list accurately reflects the main issues direct care staff
experience in providing support to someone with an intellectual disability who is
ageing.

1 – Completely Disagree
2 – Disagree
3 – Neither Agree or Disagree
4 – Agree
5 – Strongly Agree

378
Question No. Four - What do you think are the main issues facing the families and friends (including
co-residents) of someone with an intellectual disability who is ageing?

1. Access to appropriate facilities to assist people with higher care needs

2. Access to respite
3. Ageing parents
4. Family concern about future planning as the person with the disability may outlive the
parents
5. Understanding and separating behavioural issues from physical/mental health issues
6. Coping with increased support needs
7. Financial security and ongoing financial management
8. Concerns about person’s ongoing and increasing care needs
9. Clients with lower needs miss out due to an increased focus on person who is ageing
10. Communication problems
11. Friends experiencing depression themselves due to worry about their own mortality
12. The need for greater advocacy by the families to gain additional funding as support needs
increase
13. Impact upon closeness of relationship (affected by dementia)
14. Legal issues (e.g. making a will or power of attorney)
15. Fellow residents not understanding what is going on (why the person has changed or
moved)
16. Need for major home renovations (e.g. changing stairs to ramps, rails in bathrooms, etc)
17. Residing within a complex with other people with disabilities compounds personal
problems for those who are ageing
18. Lack of patience (everyone wants everything done right now!)
19. Household members reducing the person’s level of independence by attempting to ‘help’ by
doing everything for them
20. Increased pressure on families to provide ongoing advocacy
21. Lack of information for families to source services
22. Pressure on friends to cope with changing personality and skills
23. Frustration
24. Increased reliance upon staff to facilitate family contact (primarily through phone)
25. Lack of acceptance of the ageing process

I believe that the above list accurately reflects the main issues facing the families
and friends (including co-residents) of someone with an intellectual disability who
is ageing.

1 – Completely Disagree
2 – Disagree
3 – Neither Agree or Disagree
4 – Agree
5 – Strongly Agree

379
Question No. Five - What do you think are the main issues or problems facing a rural
organisation that provides support to someone with an intellectual disability who is ageing?

1. Care needs are constantly increasing, whilst funding is not

2. Training and education for both disability staff and generic aged care professionals
3. Recruiting qualified and trained staff
4. Inflexibility in funding models and structures
5. Maintaining qualified and trained staff
6. Age cut-off for ACAT prevents people with disabilities accessing services
7. Access to appropriate and relevant training for staff re ageing and support for a person with
a disability who is ageing
8. Appropriate funding models for smaller services without large numbers of ageing clients
9. Lack of mainstream services available to people with disabilities
10. Lack of specialist services such as respite and day programs
11. Cost in accessing services (travel costs and staffing costs)
12. Financial viability
13. Mainstream aged care services not understanding how to support someone with a disability
14. No dedicated aged care facility for people with intellectual disabilities
15. Lack of entry requirements into the industry (such as a minimum of Cert III in Aged or
Disability Work)
16. Lack of understanding (and willingness to act) by medical profession (doctors and hospital
staff) regarding the ageing process for people with a disability
17. Availability of complementary services to our own
18. Funding for new equipment / home modifications
19. Competition with the community’s focus upon the increasing needs of the generic ageing
population
20. Lack of public transport
21. Lack of staff skill in utilising and accessing those available mainstream services
22. Distance to nearest appropriate services
23. Limited opportunities for staff networking (e.g. cross pollination of ideas and knowledge)
24. Overcrowding in the limited space available and lack of personal space
25. Lack of flexibility in daily lives due to set routines and restrictive timeframes

I believe that the above list accurately reflects the main issues or problems facing a
rural organisation that provides support to someone with an intellectual disability
who is ageing.

1 – Completely Disagree
2 – Disagree
3 – Neither Agree or Disagree
4 – Agree
5 – Strongly Agree

380
Question No. Six - What do you think are the highest priorities in training for staff who assist
individuals with an intellectual disability who are ageing?

1. Person centred planning

2. Medical management
3. Understanding medication and its effects
4. Understanding of changes associated with ageing
5. Quality of life management
6. Training in observation skills so that changes in client health can be detected early
7. Behaviour management
8. Attitude training (patience, empathy, consistency, ethics)
9. OH & S and Manual Handling Training (how to provide appropriate physical
support)
10. Personal care needs
11. Understanding of health issues
12. Understanding of the ageing process and stages that people move through
13. Understanding of different support needs at different stages of ageing
14. Dementia
15. Comprehensive and accurate record keeping to assess changes over time
16. Generic aged care courses for disability service providers
17. Understanding of emotional issues
18. Dietetics (meal preparation, tube feeding etc)
19. How to transition people between services effectively
20. Time management
21. Alternative communication methods
22. Skills (such as counselling) in supporting other service users/housemates in
dealing with the ageing issues of their friend
23. Advocacy to act as the voice for people who are ageing and seek appropriate
facilities
24. Diabetes
25. Specialist equipment usage
26. Ability to educate the general public about client abilities

I believe that the above list accurately reflects the highest priorities in training for
staff who assist individuals with an intellectual disability who are ageing?

1 – Completely Disagree
2 – Disagree
3 – Neither Agree or Disagree
4 – Agree
5 – Strongly Agree

381
Appendix 9 – Ethics Approval

382
383