Chapter 3

Legislative and policy frameworks

3.1        For much of the 20^th century, people with significant intellectual and physical disabilities were sent, at a young age, to state-run institutions established for the care of people with particular needs. People with disabilities remained in these institutions for the duration of their adult lives and were reliant on the support of formal or employed caregivers. The deinstitutionalisation of the disability sector that took place during the 1970s and 1980s was designed to shift the responsibility of care from the state to communities, but resulted in families shouldering most of this responsibility.[1] Several decades later, the first generation of people who were raised in the home is now entering middle age. Their carers, typically parent and family carers, are themselves advanced in years and many are struggling with the responsibility of care. Many now confront the uncertainty of not knowing who will care for their son or daughter when they die or when they themselves require care.

3.2        Government policy has had some role in both driving and responding to change in care provision for people with disabilities. The Australian Government's shift away from institutional care was influenced by the policy work of the United Nations in the 1970s and 1980s, in particular the United Nations Declaration on the Rights of Disabled Persons in 1974.[2]

3.3        Key Commonwealth responses during the period included the early 1980s Review of Handicapped Programs, the subsequent passing of the Disability Services Act 1986 and the establishment of the Human Rights and Equal Opportunity Commission the same year.[3] This legislation was followed by practical measures, such as the changes to social security payments following the 1988 Social Security Review (the Cass Review).[4] The Invalid Pension (1909) was overhauled with the aim of encouraging rehabilitation and self-sufficiency and renamed the Disability Support Pension in 1991.[5]

3.4        The Home and Community Care (HACC) Program was introduced in 1985. HACC continues to provide services to assist people with a disability, or who are ageing, to remain at home. The Home and Community Care Act 1985 also clearly recognised the role of carers and their needs for respite.[6] The eligibility criteria for the Handicapped Child's Allowance (later Child Disability Allowance), payable to parents of 'severely handicapped' children under the age of 16, was gradually expanded during the 1970s and 1980s. This payment was eventually replaced by the Carer Allowance in 1999, paid to people caring for either an adult or a child with a disability.[7]

3.5        During the period of reform in the 1980s, public sentiment was very supportive of the shift away from institutionalisation and towards a more inclusive social services framework that included assisted family care. However, twenty-five years have passed since the enactment of the Disability Services Act 1986, and evidence suggests that radical change is once again required. As outlined in the previous chapter, much of the evidence taken by the committee has suggested that existing government legislation, policy and services are inadequate in meeting the needs of people with disabilities and their carers.

3.6        This chapter begins by examining the United Nations framework on the rights of persons with a disability, before proceeding to examine Australian disability and carers legislation. It seeks to identify the roles of the Commonwealth and the states and territories in assisting people with a disability and their carers, and explore the linkages and gaps in the legislation across jurisdictions. This chapter demonstrates that while existing legislation has attempted to accommodate the needs of those with a disability and their carers, the evidence received during the inquiry from people struggling to identify, navigate and utilise government services makes a strong case for reform.

Rights based framework

3.7        In the 1970s, the UN responded to increasing international awareness of the rights of people with disabilities through the Declaration on the Rights of Mentally Retarded Persons (1971) and the Declaration on the Rights of Disabled Persons (1975). The Declaration on the Rights of Mentally Retarded Persons sought to provide a set of principles seeking to enable people with disabilities to participate and integrate in society:

...if possible, persons with intellectual disabilities should live with their families or with foster parents and should participate in various aspects of community life.[8]

3.8        Similarly, the Declaration on the Rights of Disabled Persons promoted recognition that people with disabilities have the same civil, political and access to services rights as others.[9] This theme of participation and integration for people with disabilities culminated in the UN declaration of 1981 as the International Year of Disabled Persons, and its designation of the period 1983–1992 as the UN Decade of Disabled Persons.

3.9        The United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the CRPD Optional Protocol entered into force on 8 May 2008. Australia ratified both the treaty and the protocol in July 2008. The CRPD identified a number of principles that govern its implementation:

• Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
• Non-discrimination;
• Full and effective participation and inclusion in society;
• Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
• Equality of opportunity;
• Accessibility;
• Equality between men and women; and
• Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.[10]

3.10      A number of non-government organisations, many of which operate according to rights-based principles themselves, told the committee that government should ensure that its commitment to the CRPD treaty is mirrored in practice, and ensure that service delivery enables these rights to be realised. Ms Sue Barnes, representing People With Disability Australia, told the committee that existing legislation does not ensure that people's rights are met:

We have illustrated...the effects that the long-term failure of governments to plan for the future in the disability sector has on people with disability, which have resulted in major human rights abuses for those individuals.

[T]here is absolutely no way that the system, in the way it works at the moment, can pick them up as an individual and enable them to enjoy the kinds of rights and experiences that they are entitled to under the various pieces of legislation and, as we said, under CRPD. [11]

3.11      People with Disability Australia also suggested that the CRPD should be utilised as an interpretive aid to audit and access proposed reforms to the sector.

Rights in existing Commonwealth, state and territory legislation

3.12      There are several references in Commonwealth and state and territory legislation that imply, for the most part explicitly, that people with disabilities are entitled to the same rights as other members of society. Under the National Disability Agreement (NDA), the Commonwealth is responsible for:

...ensuring that Commonwealth legislation is aligned with national priority, reform directions and the UN Convention on the Rights of People with Disabilities.[12]

3.13      State and territory legislation also includes references to the rights of people with disabilities. The Victorian Disability Act 2006, for example, lists a number of rights people with disabilities should have, and stipulates that disability services must respect these rights.[13] However, JacksonRyan Partners' submission, for example, expresses concern such rights are not comprehensive in application nor widely understood.[14]

3.14      A direct reference to rights is provided in the Disability Services Act 2006 (QLD). This act extends on the rights declaration from the Disability Services Act 1992 (QLD) that stated, 'All people with a disability have the same human rights as other members of society and should be empowered to exercise their rights.' The 2006 legislation expands this statement to include other references to rights of people with disabilities:

People with a disability have the right to equal access to services available to other members of the Queensland community...

These include rights when using disability services, such as the right to receive services:

• In a way that respects the confidentiality of personal information;
• In a safe, accessible built environment appropriate to the person's needs.

The Act specifically recognises the right to live a life free from abuse, neglect or exploitation.[15]

3.15             However, evidence received from Queensland-based submitters indicated that the intent of the legislation above is not recognising people's rights in a practical way:

PwDA have the same right of access to services and other supports as those enjoyed by the general ageing population, in keeping with the principle of being supported to lead an ordinary life [...]

It is Endeavour's experience that these principles are markedly absent from current policies and practices impacting on the lives of PwDA.[16]

3.16      Disability services legislation in other states also includes principles that recognise the rights of people with disabilities. The Disability Services Act 1993 (NT), for example, provides a mostly theoretical overview of the rights-based principles to be furthered with respect to people with disabilities, and the objectives that disability services should deliver.[17]

3.17      Theoretically, the recognition of these rights should ensure that people with disabilities receive appropriate care even after their family members 'can no longer care'. However, the committee heard that the complexity of the existing combination of state and Commonwealth legislation, together with an overall lack of funding, results in disjointed and ineffective service delivery that does not allow these rights to be realised. Overwhelmingly, the committee received evidence that the current system cannot meet the objectives of the legislation or safeguard the rights of people with a disability.

Commonwealth legislative framework

3.18      Many of the difficulties experienced by witnesses in relation to their attempts to identify and access satisfactory disability and carer support services were related to problems navigating Commonwealth and state and territory frameworks, legislation and services. This section seeks to identify the Commonwealth frameworks and agreements that relate to the provision of disability and aged care services, as distinct from the state and territory's responsibilities, which are discussed thereafter.

National Disability Reform Agenda

3.19      Commonwealth legislation, frameworks and funding agreements for disability are the subject of recent and current reform. On 23 July 2008, the Community and Disability Services Ministers' Advisory Council launched the National Disability Reform Agenda. Key areas identified for reform were:

• Service benchmarks;
• Disability services' quality standards;
• Service planning;
• Building people centred service delivery;
• Early intervention and prevention;
• Workforce capacity;
• National consistency; and
• Ageing carers.[18]

3.20      The reform agenda was envisaged to be a national measure that would improve services across jurisdictions to address the 'fragmented service system lacking in early intervention and often driven by crisis'.[19] However, evidence received by the committee suggested that while nearly three years have passed since the launch of the reform agenda, the system remains as fragmented and crisis driven as ever:

Unfortunately, there are still some barriers within the planning and access to those programs...It is based on crisis rather than forward planning, and there are insufficient programs and services out there to meet the needs of all those who require them.[20]

National Disability Agreement

3.21      The National Disability Agreement (NDA) replaced the Commonwealth State Territory Disability Agreement (CSTDA) from 1 January 2009, as part of the wider program of reform. The NDA sets out the roles and responsibilities of the Commonwealth and the states and territories in relation to disability. In addition to joint responsibilities in the areas of policy development, research, Indigenous outcomes and data provision, the Commonwealth is responsible for:

• Employment services;
• Income support;
• Funding states and territories' programs and initiatives, where appropriate; and
• Ensuring Commonwealth legislation complies with the CRPD.[21]

3.22      The responsibilities of the states and territories under the NDA relate to the provision of specialist disability support services, and are detailed later in this chapter.

3.23      The NDA identifies ten priority areas for policy direction in the area of disability services, for example, priority (c) is 'Making Older Carers a Priority'.[22] The impact of the reforms was envisaged to:

...make it easier for people with disability, their families and carers to access the right support through case-based early intervention and to move through the system as their needs change. The reforms simplify funding and service delivery responsibilities to make it easier to coordinate services, close service gaps and improve access to the right services...

The reforms will create an effective, efficient and equitable disability services system with a focus on timely, person-centred approaches and lifelong planning.[23]

3.24      The NDA also includes a number of performance indicators that states and territories must report against each year. These include, for example:

• The proportion of the potential population accessing disability services;
• The proportion of carers of people with disability accessing support services to assist in their caring role.[24]

3.25      The National Disability Agreement Performance Report for 2009–10 provides the most recent data on the states and territories' performance in the context of the NDA. While there are issues identified regarding the availability of data, the Report suggests that some of the performance targets have not yet been met: for example, the reported percentage of the potential population accessing disability services in 2008–09 ranged from 13.9 per cent in QLD to 32.1 per cent in the ACT. [25]

3.26      This data was reiterated in the testimony of witnesses to the inquiry, as Australian Federation of Disability Organisations (ADFO) explained in relation to accessing transition planning:

I think the system is so fractured and so variable across Australia...you might find pockets where a disability service provider or a local Home and Community Care service might be doing better at those sorts of things and in other areas but there really is no consistent planning across Australia or even across a jurisdiction that would allow people with disability and their families to access those kinds of gentle transitions.[26]

3.27      Most of the evidence received from families of people with a disability and advocacy organisations reflected the views and experience of AFDO. For the most part, people who use the disability support system do not consider it coordinated, effective, efficient or equitable. However, an example of a program that is partially funded through the NDA (NSW's Stronger Together), and has been welcomed by some service users, is provided later in this chapter.

National Disability Strategy

3.28      During 2008 and 2009, the Commonwealth Government consulted widely to assist in the formation of a National Disability Strategy. Initial consultation included the establishment of the National People with Disabilities and Carer Council, the release of a discussion paper for public comment and the opportunity for people to participate in public forums in capital cities and focus groups in regional areas.[27]

3.29      The National Disability Strategy (2010–2020) was formally endorsed by COAG on 13 February 2011. It provides an overarching policy framework for coordinated disability services across the jurisdictions, designed to be consistent with the CRPD. The strategy provides direction for the formulation of legislation and policy across six policy areas:

1.      Inclusive and accessible communities;

2.      Rights protection;

3.      Economic security;

4.      Personal and community support;

5.      Learning and skills; and

6.      Health and wellbeing.[28]

3.30      The strategy includes some reference to carers and long-term future planning. It acknowledges the role that families and carers play in disability support, and notes that the proportion of informal carers relative to people with a severe or profound disability is projected to decrease significantly in the next fifty years.[29] The strategy recognises the need for long-term care for people with a disability, and in this respect notes that the Commonwealth Government, as part of the strategy, has commissioned the Productivity Commission to conduct an inquiry into a long-term disability and support scheme (as discussed in Chapter 1).[30] The strategy also states that carers are assisted by services under the NDA, and that the Commonwealth Government is committed to further acknowledgement of and assistance to carers through the development of a National Carer Recognition Framework.[31]

National Carer Recognition Framework

3.31      The National Carer Recognition Framework is comprised of carers' recognition legislation and the National Carer Strategy. The Federal Parliament passed the Carers Recognition Act 2010 in October 2010, and the Commonwealth Government continues to develop the National Carer Strategy through FaHCSIA and DoHA.

3.32      The Carers Recognition Act 2010 provides some recognition of the efforts made by informal support networks and carers. However, while the Act acknowledges the contribution informal carers make to society, it does not create enforceable obligations on the Commonwealth.

3.33      Schedule 1 of the Act lists ten principles relating to the recognition of carers and the opportunities they should be afforded:

The Statement of Australia's Carers articulates principles for dealing with carers in a policy, program or service delivery setting. The Statement for Australia's Carers will not create rights, but will instead establish key principles on how public service care agencies and associated providers should treat carers when developing, implementing, providing and evaluating care supports.[32]

3.34      The Carers Recognition Act 2010 is complemented by the development of the National Carer Strategy, which is envisaged to provide an overarching framework for future policy and service delivery for carers. Targeted national consultation was undertaken in 2010 to inform the development of the strategy, which is planned to be implemented in 2011. Dr Nick Hartland, representing FaHCSIA, explained:

So in concept the National Carer Strategy is somewhat similar to the National Disability Strategy. It is a document that sets out the government’s vision for carers and as a mechanism for getting alignment across Commonwealth departments and with states to improve outcomes.[33]

3.35      The strategy and carers recognition legislation provide principles and a framework for carer support, while practical assistance to carers is provided via the National Respite for Carers Program (NRCP), and through it the National Carer Counselling Program (NCCP), and Commonwealth Respite and Carelink Centres (CRCCs).

3.36      Commonwealth Respite and Carelink Centres are operated by local community organisations in 54 locations throughout metropolitan and regional Australia.[34] The Centres act as central points for carers wishing to arrange respite, facilitating such services as:

• In-home respite care;
• Support for carers during breaks; and
• Residential respite care.[35]

3.37      The Department of Health explained that the CRCCs provide an opportunity for carers to discuss their situation and be provided with information and referrals to respite as well as wider support services.[36] While this advice is valuable to carers, the committee heard the shortage of respite results in places only becoming available to people in crisis. This limited availability of respite, as well as the second component of the NRCP, the National Carer Counselling Program, are discussed further in Chapter 5.

Disability and aged care

3.38      The Commonwealth is responsible for providing a disability policy framework, but has a much more active role in aged care provision. While states and territories are responsible for providing specialist support services to people with a disability, the Commonwealth provides such services to people who are ageing.[37]

Aged Care Act 1997

3.39      The Aged Care Act 1997 built on earlier legislation contained in the National Health Act 1953 and the Aged and Disabled Persons Care Act 1954.[38] It provides funding for aged care services and stipulates the manner in which such services must operate. The Act details how subsidies are to be provided to facilitate residential care, community care and flexible care for ageing people.

3.40      Under the Act, the Commonwealth subsidises approved providers who then facilitate residential care to eligible people. The value of these subsidies is currently approximately $7.1 billion per annum.[39] The types of fees and maximum amounts that such service providers may charge residents themselves are determined by the Schedule of Resident Fees and Charges.[40] However, the Act also requires residential care service providers to keep a number of places for people who are exempt from making such payments.[41]

3.41       Particular programs that are subsidised by the Commonwealth under the community and flexible care options include:

• Extended Aged Care at Home (EACH), $206 million in 2009–10;
• Extended Aged Care at Home (EACH)—Dementia, $99.6 million in 2009–10;
• Community Aged Care Packages (CACP), $508.7 million in 2009–10.[42]

3.42      According to the Act, eligibility for care is determined by need, the identification of a particular type of care as being most appropriate, and the criteria specified in the Approval of Care Recipient Principles.[43] In practice, these determinations are made by means of an Aged Care Assessment Team (ACAT) assessment.

3.43      Earlier the committee examined the problems arising when people with a disability enter the aged care system, and cited the example of Ms Margaret Cooper, who did not experience continuity of care (paragraphs 2.20–2.21). Similarly, problems exist for people with a disability who need early access to aged care services. While ACAT assessments do not formally require a person eligible for care to have reached a certain age, the 'primary target group' of aged care services is people aged 70 years or older.[44] The Assessment and Approval Guidelines state that 'a referral to an ACAT for approval for residential care should be the absolute last resort'.[45] The guidelines indicate that younger people with disabilities can only be assessed as eligible for aged care services where 'no other [state or territory] care facilities or care services more appropriate to meet the person's needs' exist. The Department of Health and Ageing told the committee that a person with advanced dementia in their forties:

...could end up receiving an extended aged care at home dementia package...and we already have a number of people under the age of 70 receiving those packages.[46]

3.44      However, other evidence to the inquiry suggested that even where appropriate care is not being provided by the state or territory, people with a disability cannot access aged care services:

It becomes a particular problem for people with Down syndrome because of the very high levels of early onset dementia amongst people in their late 40s and early 50s...as high as 60 or 70 per cent...

The problem is that aged-care services, which generally have the expertise and experience in dealing with dementia, do not kick in until 65 in most regions. So people have been turned away from those services because they are not old enough. It doesn’t matter how they present clinically or how much they are suffering from dementia. Some people have been denied access to appropriate dementia support because they are not old enough. They might be 54 but they have to wait until they are 55. There was one man earlier this year who was 59. He was living on his own in a house that had been his mother’s. He had some support that he had had for a long time, but he was not able to have an ACAT assessment until he turned 60, even though it was quite clear and he already had the diagnosis of dementia.[47]

3.45      The committee heard that the interface between the aged care system and the disability system is very difficult to navigate. While people with a disability may need specialised care that is offered by Commonwealth subsidised aged care services providers and not state or territory service providers, such as the example of dementia above, the early onset of such conditions can preclude people from being assessed as eligible to access the services they need. The committee heard that this then results in people with disabilities being referred alternatively to ill-targeted state and territory services and then to aged care services for which they are not eligible, which results in a re-referral back to the state and territory services and so on. This causes major difficulty for people with a disability who often do not receive the care they need until years after such a need emerges, or at all. For those who do not have a dedicated family advocate, navigating between the two systems is virtually impossible. This interface between the disability and aged care sectors is explored further in the following chapter.

Age Pension

3.46      People with a disability aged 16 or over and under the qualifying age for the Age Pension may be eligible for the Disability Support Pension.[48] The qualifying age for the Age Pension, currently 65, will increase incrementally from 1 July 2017, reaching 67 by 1 July 2023.[49] The committee heard that this change may exacerbate existing complications and difficulties navigating the divide between the disability and aged care systems:

Raising the retirement age will mean that people with disability are on disability support pensions for a bit longer, so they are perhaps locked out of some systems that might be more appropriate for them, particularly if they are acquiring multiple disabilities that are related to their ageing. So people with disability who have had a lifelong disability, for example an intellectual disability, may begin to have a vision impairment or a hearing impairment that is ageing related or they begin to experience dementia. If we are talking about raising the retirement age for pensions then we obviously at some stage are going to start looking at the retirement age for aged care systems as well. That means that people with disability who are acquiring multiple disabilities and who may need additional support earlier on will not necessarily have access to it.[50]

3.47      The committee heard that the Department of Health and Ageing is considering the different aged care needs assessments undertaken by 108 different ACAT teams, and is seeking to consolidate them into three assessment tools over the next 12 to 18 months.[51]

Home and Community Care (HACC)

3.48      The Home and Community Care (HACC) program provides home based care and support services people with a disability, older people and their carers. The program aims to reduce admissions to residential care in cases where the provision of limited assistance can enable people to remain at home. Such services can include nursing care, respite care, transport, counselling, support and information and advocacy.[52] The HACC program is far reaching with significant client numbers comprising both older people (610,000 in 2009–10) and people with a disability:

In 2009–10, 22.7 per cent of HACC clients were aged under 65 years (down from 23.2 per cent in 2007–08). Analysis of data from the HACC program in 2009-10 indicates that clients aged under 65 years were significantly over-represented in particular assistance types, including respite care (68.6 per cent)...

In 2009–10, 32.4 per cent of HACC clients classified as care recipients reported that they were also receiving assistance from a relative or friend/carer (DoHA unpublished).[53]

3.49      In April 2010, COAG signed the National Health and Hospitals Network (NHHN) Agreement.[54] As part of that Agreement, the Commonwealth agreed to take full responsibility for aged care services. While most aged care services were already the responsibility of the Commonwealth before the agreement (as detailed above), the Home and Community Care program was an exception. While states and territories presently facilitate jointly-funded HACC programs for all clients, the Commonwealth will take over both funding and operational responsibility for clients aged 65 or over (and Indigenous clients aged 50 and over) from 1 July 2012. The period from 1 July 2011 to 1 July 2012 will be a transition year whereby states will still manage the operation of the services to older people but with increased Commonwealth funding.[55]

3.50      This new split between Commonwealth and state and territory responsibilities causes concern for people already struggling to navigate existing divisions between the aged care and disability care systems, and also for service providers that will be affected by the changes. Following the COAG announcement, NSW HACC service provider peak organisations formed a 'Community Care Consortium' in order to advocate collectively during the transition period. A letter from the consortium to its members reflects a lack of certainty around the upcoming changes:

At the moment the Peaks have only the barest outline of what is proposed. As always, it is the detail which is most important and this is yet to be determined.

There will be practical difficulties for Services Providers which currently service both parts of the HACC target group, i.e. older people and younger people with disabilities.[56]

3.51      However, the Department of Health and Ageing told the committee that the changes will not affect client access to services or service provision:

There is a misconception of the way the split is going to work that we will regularly come across. From a service provider point of view and from a client point of view HACC is not splitting. The range of services that service providers currently provide and the range of clients they currently see will in most cases continue. What is changing is how their funding flows and what contributions the state and territory governments make to the funding.[57]

3.52      Despite the Department being confident that those accessing the HACC program will receive seamless service while funding arrangements change, the committee remains unconvinced. The committee is also concerned that this new system will place a greater administrative burden on service providers.

Commonwealth planning services

3.53      Having examined the Commonwealth's role in the provision of disability services, the committee now turns to examples of specific Commonwealth programs targeted towards future planning.

Special Disability Trusts

3.54      Special Disability Trusts (SDTs) provide a vehicle for funds used to protect and support people with severe disabilities. They enable immediate family members to make private financial provision for the future care and accommodation needs of a person with a disability. Contributions to a trust have limited impact on Centrelink income or assets tests. The committee inquired into SDTs in 2008, and made a number of recommendations designed to improve the scheme.[58] The committee acknowledges that there have been a number of recent changes to SDTs, including, for example, new employment rules and expanded options for how trust money may be spent.[59] The committee also notes that the 2011–12 Federal Budget included additional measures to introduce exemptions to capital gains tax.[60] Nevertheless, in spite of these reforms, the committee is still concerned by evidence suggesting that the take-up rate remains relatively low. Departmental officers informed the committee that as at 30 September 2010, there were only 119 SDTs in operation.[61]

FaHCSIA booklet: Planning for the Future: People with disability

3.55      In recognition of the need for guidance on planning, FaHCSIA released a booklet, Planning for the Future: People with disability in 2007. FaHCSIA described the positive feedback it had received in relation to the booklet, which has been distributed in hard copy form and is also available via the Department's website. The booklet is available in English and 13 other languages, and as at 18 November 2010, 30,600 hard copies had been distributed and 4,967 copies had been downloaded from the internet.[62]

3.56        Witnesses representing carers groups welcomed the booklet but considered that supplementary information sessions or workshops were also necessary:

I guess the key thing for me is that a book, alone, will not do it. As I said, our training is all based on that booklet we have, but unless you have people back in little work groups working through it, parent to parent, it just does not seem to go anywhere.[63]

3.57        The committee also heard that the booklet, as well as other government publications, could be better targeted to people with a disability and their carers:

At times information comes out from government departments and there is an expectation that it is easy to read. I am not sure if that is the case. I do not know if enough attention is given to the actual needs of the audience. It may be written up in such a way that it makes it a bit confusing and people do not take up the opportunities to look into different programs for that reason.[64]

3.58      The Commonwealth also allocates parts of the NDA funding to specific projects that provide planning assistance, such as the $60 million Supported Accommodation Innovation Fund (SAIF).[65] The committee notes that the SAIF program is an example of service planning rather than life-long planning.

Committee view

3.59      The committee acknowledges the work that Commonwealth agencies have undertaken with respect to information about planning. However, the committee is concerned that there is little evidence of any integrated or coordinated approach to planning, and while the initiatives outlined above have value, their utility is limited within a fragmented system that does not reach all of those who need services, much less those who need them most.

State and territory legislation

3.60      The states and territories assumed responsibility for the provision of specialist disability services in 1991 following the first Commonwealth State Territory Disability Agreement (now NDA). Under the NDA, the states and territories must provide specialist disability services in 'a manner which most effectively meets the needs of people with disability, their families and carers, consistent with local needs and priorities'.[66] The Australian Institute of Health and Welfare (AIHW) categorises specialist disability services into five service types: respite, accommodation support, community support, community access and employment (provided by the Commonwealth).[67]

3.61      The signing of the NDA coincided with a funding increase of $408 million for state and territory specialist disability services to a total $5.3 billion over five years.[68] Key reforms to be funded under the agreement were:

• Improved access to disability care including consideration of systems that provide a single point of access;
• Nationally-consistent assessment processes and a quality assurance system;
• A renewed focus on early intervention and planning to ensure that clients receive the most appropriate and timely support;
• Service providers will be better able to develop train and employ care workers;
• More consistent access to disability aids and equipment;
• A commitment by all levels of government to work together to better measure the level of unmet demand for disability services; and
• Continued work on reform of roles and responsibilities in relation to community mental health, disability services and aged care.[69]

3.62      While the state and territory legislation and policy priorities must comply with national directions, there is considerable scope under the NDA for different states and territories to have varying systems. These differences are apparent in areas such as scope of portfolio funding, types of services available and legislation.

3.63      Some examples of state and territory variation are illustrated in recently released reports such as an AIHW report on the use of specialist disability services as well as the Productivity Commission's Disability Care and Support Draft Report. The AIHW report indicates the states with the highest rates of service use by people under 65 years are Victoria and South Australia, while the Northern Territory and Queensland have the lowest access rates.[70] It also notes that specialist psychiatric disability services were provided under NDA[71] funding in Victoria, Queensland and in some cases Western Australia, while in other jurisdictions such services were provided under the health portfolio.[72] In relation to funding, the PC notes that state and territory funding can fluctuate from year to year in accordance with total budget expenditure, and that the proportion of funding allocated to particular service types varies by jurisdiction, which affects the quality of services provided:

Depending on which supports a person may require, they may find themselves better supported in one state rather than another.[73]

3.64      Differences in state and territory services provision is reflected in legislation and policy priorities. States and territories were required to pass their own disability legislation following the Commonwealth's Disability Services Act 1986:

• Disability Services Act 1991 (ACT);
• Disability Services Act 1993 (NSW);
• Disability Services Act 1993 (NT);
• Disability Services Act 2006 (QLD);
• Disability Services Act 1993 (SA);
• Disability Services Act 1992 (TAS);
• Disability Act 2006 (VIC);
• The Disability Services Act 1993 (WA).[74]

3.65      The following short summary of some of the recent changes to state and territory disability policies or disability services illustrates the different approaches taken by the states and territories in disability service provision.

ACT

3.66      In September 2009 the ACT Government launched its updated disability policy framework, Future Directions—Towards Challenge 2014. The framework was developed by the ACT Disability Strategic Governance Group, and is structured under six policy priorities:

• I want the right support, right time, right place;
• I want to contribute to the community;
• I want to socialise and engage in the community;
• I want to know what I need to know;
• I want to tell my story once; and
• I want a quality service system.[75]

3.67      Relevant to the current inquiry, the Futures Planning policy document and grants program has been developed to assist people to implement personal future plans. In addition, the ACT government is developing an ACT Government Policy Framework for People with Disability who are Ageing. The report on the framework consultations included a section on the needs of ageing carers, reflecting many of the same planning, funding, information and respite needs that have arisen in the present inquiry.[76]

New South Wales

3.68      New South Wales' key disability reform project is entitled Stronger Together: A new direction for disability services in NSW 2006–2016. The ten year plan is designed to provide direction for reform and a 40 per cent increase to the capacity of the specialist service system in the state.[77]

3.69      The NSW Government's submission discussed care for people ageing with a disability in relation to wider Stronger Together goals:

The AlP [Ageing in Place] initiative addresses goals outlined in Stronger Together, the NSW Government's 10-year plan to provide greater assistance and long-term practical solutions for people with a disability and their families, to increase assistance and options for people with a disability to live at home, as well as increase the range of specialist accommodation services, including options that promote ageing in place. Key to achieving these outcomes is engaging in research on the effects of ageing on people with an intellectual disability, also an identified priority under Stronger Together. It is essential that people with a disability receive quality support, informed by good practice and research.[78]

3.70      During the first five years of the strategy, Stronger Together recognised the needs of carers through the creation of 4,000 new respite places, and in the second phase a large proportion of $623 million Commonwealth funding under the NDA will be directed towards older carers.[79]

Northern Territory

3.71      The Northern Territory Government engaged KPMG to undertake a review of the Disability Service System in the territory in late 2005. The report recommended that an 'integrated service model' be developed to align NT services with those in other jurisdictions as well as international developments.[80] This is explored more fully in Chapter 5 when the committee discusses the NT Government's newly established Office of Disability which offers a single access point or one-stop-shop for disability and aged care services.

Queensland

3.72      Key changes from previous legislation in the Disability Services Act 2006 were the strong emphasis on the rights of people with a disability, and strengthened requirements for state funded service providers.[81] To ensure that people with disabilities can realise their equal right to government services, the Act requires all Queensland government departments to develop a disability service plan.[82] In addition, the Guide, Hearing and Assistance Dogs Act 2009 legislates to allow people accompanied by guide dogs equal rights to public facilities.

3.73      Growing Stronger: Investing in a better disability service system is Queensland's 2007–2011 reform program that introduces a six-step service pathway:

• A single point of contact, so that clients can quickly get the information and request the support they need
• A single simplified 'Request for assistance' form
• A standardised assessment process to establish a person's eligibility for support and determine what support is available to them
• The ability to source assistance that will provide the most benefit to the client's needs.
• Less administrative red tape for service providers so that they can focus on what they do best—helping Queenslanders
• Improved information and reporting systems that allows the Department to better support its clients and service providers and plan for the future.[83]

South Australia

3.74      South Australia is reforming its community care provision to combine disability and aged care services via a single access point. The Community and Home Support division of the Department for Families and Communities is now the single access point for any enquiries about aged care, disability or caring.[84] South Australia envisages that the implementation of the single access point will be complemented by the current review of its Disability Services Act 1993.[85]

Tasmania

3.75      In 2008 the Tasmanian Government engaged KPMG to undertake a Review of Disability Services in Tasmania. Evidence received as part of the Review led to the development of several recommendations to significantly reform disability services in the state, including 'the endorsement and implementation of an entire "vision for change"'.[86] The Tasmanian Government agreed to implement the Review's recommendations over three years from 2008–09. A number of reforms have been made and the new Disability Services Bill 2011 is currently before the Tasmanian Parliament.

Victoria

3.76      The Disability Act 2006 (VIC) replaced the previous Victorian legislation contained in the Intellectually Disabled Persons' Services Act 1986 and the Disability Services Act 1991. The legislation moves towards the inclusion of a rights-based framework and more flexible service provision.[87]

3.77      The Act aims to facilitate the participation of people with a disability in the community through: the Victorian State Disability Plan 2002–12 (a new plan is required in January 2013); enabling people with a disability and their carers to provide policy input through the Victorian Disability Advisory Council; and requiring all state government public services agencies to develop and report on a Disability Action Plan to facilitate access to services for people with disabilities.[88]

Western Australia

3.78      Western Australian developed a comprehensive disability policy framework in the 1980s and 1990s including the passing of equal opportunity legislation and the establishment of the Authority for Intellectually Handicapped Persons (AIH).[89] The AIH was responsible for the Local Area Coordination program, which facilitates access to care and respite services in regional areas, reached full WA coverage in 2000. The Disability Services Act 1993 (WA) amalgamated disability services into a single department specifically for disability services.

3.79      More recently, the 2009 Count Me In: Disability Future Directions Strategy, set out priorities to achieve the vision, 'all people live in welcoming communities that facilitate citizenship, friendship, mutual support and a fair go for everyone.'[90] As well as providing policy ideas and direction, the Strategy also includes initiatives such as the Count Me In School Short Film Competition, the Count Me In Awards, Count Me In Scholarships (to facilitate research into best practice disability services) and a media strategy.[91]

3.80      As demonstrated above, the states and territories have varying legislation, policy priorities and reform strategies. The disparity between the disability service systems across different states and territories causes particular complications with respect to the portability of services across states.

Portability Issues

3.81      The committee received evidence that existing difficulties experienced by people with a disability navigating and accessing services are compounded when they move interstate. Different eligibility requirements and entitlements between the jurisdictions can make it very difficult for people with a disability to maintain continuity of service.[92]

3.82      In recognition of this problem, the states and territories agreed to implement a National Interstate Portability Protocol following the third CSTDA in 2003.[93] Under the Protocol, people with a disability may receive disability service information and registration between the relevant jurisdictions and / or be supported by a one-off transfer of funds to facilitate a 12 month extension of their previous program.[94] People with disabilities must then reapply for funding for services beyond this period. The committee received evidence suggesting that this creates significant uncertainty and risk for people with disabilities:

My wife and I reside in Broadbeach on the Gold Coast and our son resides in South Tweed Head, NSW. We went through the process of trying to move him into QLD to be close to us and his sister...but it all fell apart when QLD disabilities informed us that when the portability funding from NSW ran out in 12 months, they would not be able to promise any further funding and also that no suitable accommodation was available.[95]

3.83      The committee heard that such problems navigating interstate transfers were recognised by FaHCSIA five years ago, and that the issue has been regularly considered by the Disability Policy and Research Working Group (DPRWG):

Part of that working group has been making sure the right processes are in place to simplify possible approaches to the move from states and territories to other states and territories. There is now a network of those contact points so that they talk to each other frequently and they know what people want to do and how they want to move. [96]

Committee view

3.84      The committee recognises that FaCHSIA is aware of the issues surrounding portability. However, given these issues were identified in 2006, the committee considers that the progress of the DPRWG on issues of portability to be extremely slow. The committee is also concerned that the Protocol may present circumstances where support is not available to a person 12 months after settling in a different state.

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.

3.85      Having provided an overview of the legislative and policy frameworks, the committee now turns to examine the need for lifelong and sustainable planning. In the following chapter the committee begins by examining population ageing and documents many of the challenges faced by parent-carers. In so doing, the committee is interested in exploring the current life path for people with a disability and the challenges for those with physical and intellectual disabilities who may experience premature ageing.

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