Executive summary
This report examines the planning options and services available
now and in the future to assist people with a disability, and their carers,
plan for the long-term. In particular, it seeks to assist carers to find an
adequate answer to the question: 'What happens when I / we can no longer care?'
Evidence taken by the committee suggests that the challenges
facing the disability sector are substantial and that the existing system is
not operating effectively. People with disabilities, carers, service providers
and governments all agreed that there are many inadequacies in the choice,
funding and support options available for people with a disability.
Beyond this, witnesses have also suggested that the
deficiencies in the disability service sector have produced a crisis-driven culture
which fosters dependency and which limits innovation. It has produced
circumstances where families have become accustomed to receiving low levels of
support and where it has become commonplace for family members to care for a
person with a disability until they are unable to do so. This suggests that
while reform is clearly needed within the disability service sector, cultural
change is also required, both within the bureaucracy and service sector, in
order to establish planning cultures and behaviours that sustainably support
people into the future.
Given that Australia is anticipating significant population
ageing, which will be accompanied by a commensurate reduction in the availability
of informal care and support, the committee is deeply concerned by evidence
suggesting that little sustainable planning is taking place. Many carers are so
consumed by their day-to-day caring role that they have not even begun to start
thinking about planning. Others find the planning challenge considerable and
need support to manage what is a complex and multifaceted task.
In the report the committee focuses on whole-of-life planning,
rather than simply service planning. It documents why it is critical that whole-of-life
planning take place before proceeding to consider some of the major practical barriers
to planning, including: access to information, accommodation support,
availability of respite, appropriateness of assessment tools, and the
difficulty of navigating the disability / aged care interface. Thereafter the
committee examines some of the planning support schemes that have been
developed in the non-government sector. In acknowledgment of these innovative planning
schemes, the committee recommends that the government look to increase its
support of these organisations. In so doing, the committee also recommends the
establishment of national guidelines to give clear direction on how these
organisations might be constituted and how they should account for increased
public funding. The committee envisages that these guidelines would also
represent the beginning of an integrated and coordinated national approach to
planning.
Recommendations
Recommendation 1
The committee considers that there is a need for a clear
transition process to facilitate uninterrupted funding when people with a
disability move between states, and recommends the Department of Families,
Housing, Community Services and Indigenous Affairs work with the states and
territories to seek to resolve issues related to portability as a matter of
urgency.
Recommendation 2
The committee considers it critical that effective planning
support be available for people with disabilities transitioning from education to
employment and from employment into retirement. The committee recommends that
the Department of Families, Housing, Community Services and Indigenous Affairs
provide retirement planning support options for people employed in Australian
Disability Enterprises.
Recommendation 3
The committee recommends that the government look to
identify people with disabilities as a special group who may age earlier than
other members of the population and should therefore have access to a range of
aged care services at an earlier age.
Recommendation 4
The committee recommends that the Department of Health and Ageing
review the assessment tools used by the network of Aged Care Assessment Teams
(ACAT) to take into account the needs of people with a disability who are
ageing prematurely.
Recommendation 5
The committee notes the National Disability Agreement requirement
for states and territories to consider one-stop-shops for disability services.
The committee recommends that the Commonwealth, in consultation with the states
and territories, establish its own presence and representation at
one-stop-shops. The committee considers that one-stop-shops must be capable of
directing enquiries towards whichever service is most appropriate, whether that
service is provided at a state, territory or Commonwealth level. Further, the
committee endorses Recommendation 22 of the Who Cares...? Report on the
inquiry into better support for carers, calling for the establishment of a
dedicated Carer / Disability Unit at Centrelink. This dedicated Unit should be
accessible via disability services one-stop-shops.
Recommendation 6
The Committee recommends that the Department of Families, Housing,
Community Services and Indigenous Affairs improve its website to make
information about disability services and planning support more up-to-date,
comprehensive and navigable. In so doing, the Department should establish a
working group, which includes carers, people with disabilities and disability
services organisations, to seek feedback on matters of design, utility and
accessibility.
Recommendation 7
While the committee would like to see improvement in the quality
and accessibility of information on government websites for people with
disabilities and their carers, it also mindful of the limited reach of new
technologies. In acknowledgement of this, the committee recommends that all
levels of government should consider effective non-web-based tools for the communication
of critical information on disability and planning services. The working group
suggested in Recommendation 5 should also be engaged for this purpose.
Recommendation 8
The committee is seriously concerned by evidence suggesting that
as many as 25 per cent of carers are not linked in with Centrelink and
therefore are not receiving payment to which they are entitled. The committee therefore
recommends that Centrelink review its communication strategy with respect to carers
and engage local disability service providers more directly.
Recommendation 9
Within the framework of life-long planning, the committee
recommends that the government facilitate the provision of specialist financial
and legal advice to people with a disability and their carers to assist them
with planning decisions, including the decision to utilise a Special Disability
Trust. This advice could be made available via:
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Commonwealth funded financial and legal planning workshops
specifically targeted to address the issues that arise in disability planning;
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The provision of specialist advice through an established
Disability / Carers' Unit at Centrelink; and / or
-
Commonwealth funded independent legal services specialising in
disability services, potentially operating in conjunction with non-government service
organisations, and nationally registered on a list accessible to people with a
disability and their carers.
Recommendation 10
As Aboriginal and Torres Strait Islander people with a disability
face particular barriers accessing planning services, the committee recommends
that the Office for Aboriginal and Torres Strait Islander Health undertake
research to identify how planning support can best be provided to them.
Recommendation 11
As people with disabilities living in regional and remote areas
face particular barriers accessing planning support, the committee recommends
that the Department of Families, Housing, Community Services and Indigenous
Affairs provide additional funding and resources to develop planning services
in these areas. The committee also recommends that the Department establish a
working group of people with disabilities, their carers and regional disability
service organisations, to provide advice on how additional funding should be
utilised.
Recommendation 12
The committee recommends that the government, through the
Department of Families, Housing, Community Services and Indigenous Affairs, work
with the states and territories to establish a succession planning framework.
The framework should:
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Make clear the importance of long-term planning;
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Provide guidance on the critical aspects of long-term planning;
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Take into account the individual differences of families;
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Support a range of approaches to planning.
Recommendation 13
The committee recommends that as part of the succession planning
framework the government establish nationally consistent guidelines on lifelong
planning. It is recommended that these guidelines consider matters such as:
registration, constitution of boards, management of funds, governance
arrangements, transparency, reporting requirements, and the role of paid
facilitators.
Recommendation 14
The committee recommends that the succession planning
framework be the first step in the development of an integrated and coordinated
national approach to planning. In making this recommendation, the committee
stresses that the framework should balance the need for individualised or
tailored planning support with clear standards of governance and
accountability.
Recommendation 15
The committee recommends that in its next Budget the government
allocate funds to assist with the development of disability planning. It is
suggested that this funding be made available to:
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Organisations currently involved in planning;
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Individual families seeking to purchase planning services from
providers;
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Other disability service organisations that intend to develop
lifelong planning services for families.
The committee recommends that this funding be made available on a
recurrent basis.
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