Presenter: Stuart Wark
The more candles, the bigger the wish:
Ageing with an intellectual
(learning) disability
Stuart Walk
Why am I here?
I was very lucky to be awarded a 2012 Churchill
Fellowship to look at the issues of ageing and palliative
care for people with intellectual (learning) disabilities.
My trip includes visits to Los Angeles, Chicago, New
York, Dublin, London, Oxford, Cambridge, Edinburgh,
Bath, Bristol, Cardiff, Birmingham and Keele.
Estimated total travel distance : 22, 068kms.
Background
Personal History
• BA (Hons) and PhD at the University of New
England.
• Worked in the disability field since 1993 in a
variety of direct care, management, clinical and
academic roles.
• Currently employed at the School of Rural
Medicine at UNE, but also maintain a permanent
part-time position with a non-government disability
organisation.
Where am I from?
Scale
Armidale to Sydney is approximately equivalent to Edinburgh to London
Where I am from?
What did I leave?
Overview of Seminar
Rough Outline
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History of disability support options in Australia.
Current disability legislation in Australia.
The emergence of ageing with an intellectual disability.
History of aged care services in Australia.
Our research into what is needed in Australia.
Current and Future research (and hopefully collaborations!)
Questions and feedback.
Please ask questions or
comment at any point.
I am very keen for this to be a learning experience
for me as well, particularly around the local
problems and solutions.
I would love to hear about your personal
experiences on what works and what could be
improved.
Warning
I will be discussing some issues around
ageing and palliative care that could be
confronting or disturbing for some
individuals.
Also, I will use the term ‘intellectual
disability’ throughout – please internally
translate this to ‘learning disability’ 
My
underpinning
philosophy to
research
Disability Support in Australia:
A (brief) History
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”.
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.
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 .
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.
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”.
The 1843 Lunacy Act was 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’. While the
actual terms would be considered offensive now,
these new definitions largely mirror the current
separation between a person who has a mental health
issue and someone with an intellectual disability.
The predominant form of support for people with
intellectual disabilities remained institutionalisation
under both the 1843 and 1878 Lunacy Act; however,
in1878 it became more difficult to admit an individual
to such care without appropriate medical review.
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.
This same model of community based organisation
was replicated across Australia.
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. A new style of support, with a focus on
education, training and individual development,
started to compete with the prevailing medical model.
The release of the 1983 Inquiry into Health Services
for the Psychiatrically Ill and the Developmentally
Disabled report, 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.
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.
Current Disability Legislation
in Australia
In Australia, disability support is provided across three
separate levels of government (local council, State and
Commonwealth).
Even within these levels there are further delineations
of assistance, with different government departments
responsible for different aspects of support.
The Bureaucratic Divide
 The Commonwealth Government is responsible for
Employment Assistance Programs.
 The State Government is responsible for
accommodation and day programs.
 Local councils provide community based assistance
including respite and some day activity options.
The Resulting Mess
However it is not so clear cut. As an example:
A child with a disability is assisted by the State
Government Department of Health until age 5, then
the Department of Education until age 18, and then
the Department of Human Services. If the person
requires therapy assistance (for example), they may
receive support from multiple government
departments simultaneously (or not at all depending
upon the entry criteria and availability of therapists).
Personal therapy equipment (such as communication
devices) are considered the property of the
government department and therefore do not move
with the individual when they transition to a different
service.
This is all for a very simple case; it naturally gets even
more convoluted if the person has a dual diagnosis of
mental health, drug and alcohol etc.
The Emerging Issue: Ageing
with an intellectual disability
A person born with an intellectual disability eighty years ago would
not be expected to live past their second decade. People with
intellectual disabilities are, however, now living far longer. A
combination of factors including improved care and health
technology has seen the life expectancy of a person with an
intellectual disability increase dramatically.
The progress in health and allied care meant that people with a mild
intellectual disability now have a similar life expectancy to that of
the mainstream population. Assisting people with disabilities to age
successfully is now a major priority within the community services
sector in Australia.
The Current Problem
A major issue has emerged in how to most effectively assist
people with an intellectual disability to age successfully.
In Australia, there is a separation in terms of both legislation
and overarching government structures with respect to the
provision of support for people who are ageing versus people
who have an intellectual disability.
This adds yet another layer of complexity onto the already
confusing disability support system.
Under the current government systems, residential
ageing support services are provided predominantly
by the Commonwealth Government, while residential
support for people with disabilities is provided by the
State Government.
Not surprisingly, both sides are therefore trying to
push the cost of supporting people ageing with an
intellectual disability onto each other.
A (Brief) History: Aged Care
Services 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.
The aged care support system for individuals without
a family network to assist them has been historically
based upon government run hospitals and institutions
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
Currently, people who are ageing in place (being
supported to remain at home by community-based
workers) are supported by differing government
departments to those who have moved into residential
aged care facilities.
Community-based aged care support guidelines
specifically 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.
However, this distinction actually means that people
with disabilities who are ageing are effectively
excluded from receiving home care support as their
individual needs change.
This results in premature admission to residential aged
care facilities.
But what is needed?
We know we have a problem. But how do we know
what is needed to make a real difference?
There is limited research in Australia that has directly
asked the support workers, the actual people doing the
work, what the main problems are, and what could be
implemented to support the provision of services to
people ageing with an intellectual disability.
Lead-In Research
The purpose of our recent research at the University
of New England was to ask the workers what they
thought were the biggest impacts upon people ageing
with an intellectual disability in rural NSW, and what
could be done to fix them.
The participants in the study were drawn from 12
different services providers (a variety of small,
medium and large) across regional, rural and remote
New South Wales.
Methodology
The current study used a Delphi Survey tool. In
simple terms, a Delphi research model proposes one
or more very open ended questions and requests that
each participant write down as many answers as they
think are relevant.
The survey is done anonymously, and every person
can indicate their agreement or disagreement with the
proposed issues of the other participants.
Methodology Continued
The answers from all participants are then collated together,
and re-presented to each individual for further consideration.
This process continues until agreement is reached within the
group upon what issues are important.
Once the issues are accepted by the group as being appropriate,
each participant is asked to rate the issues on a Likert-scale
(one being irrelevant and seven being critical).
All of the participant’s responses were again collated to
determine which issues they considered the most important.
The Survey Questions
The Participants were initially asked 6 key trigger questions;
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?
The Survey Questions
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?
Results
There were a total of 134 different issues identified by
the participants that were deemed important by the
Delphi Panel, and for which consensus was
considered to have been achieved.
Results Continued
A thematic analysis of the results revealed key areas
of concern around:
1. Funding
2. Access to Services
3. Increasing Care Needs
4. Training and Knowledge
5. Ageing Carers’ Support
6. Quality of Life
Results Continued
Time restraints prevents too much specific discussion
around the results, however I can provide links to
some papers that outline the findings in more detail.
However a series of recommendations were generated
from the study that were aimed at achieving practical
and cost effective solutions to assist people ageing
with intellectual disabilities, their carers (both paid
and unpaid) and their friends.
Recommendations
The other primary recommendations from the study
focussed 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.
Recommendations 1-2
Key Recommendation 1 – Mandatory Minimum Qualifications
For the primary disability services funding body to work with peak bodies
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.
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.
Recommendations 3-5
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.
Key Recommendation 4 – Joint Training Agenda
That the major ageing and disability peak bodies develop a joint training agenda to
address common educational needs as a means of initiating greater interaction
between the two sectors.
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.
Recommendations 6-8
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.
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.
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.
Recommendations 9-11
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.
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.
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.
Current Research
A team of researchers from the University of New England and
University of Sydney have combined with non-government
aged care and disability organisations across two states (NSW
and Queensland) to conduct a study of ageing with an
intellectual disability.
The focus of this study is comparative, looking at the
experiences of people ageing both with and without a lifelong
intellectual disability , across rural and metropolitan locations,
and in different jurisdictions. Preliminary results are going to
be presented at the IASSID Asia Pacific Conference in August.
Future Research?
One of the goals is of my Churchill Fellowship is to
establish linkages across the USA, Ireland and the UK so
that we can look at developing some collaborative
research projects that examine the experiences of
individuals ageing with an intellectual disability across
different countries.
From there, we can hopefully start to define exactly what
is working well, and what impediments may be able to be
overcome.
Any easy questions?
Best Contact Details
 Email : swark5@une.edu.au