Chapter 1


Chapter 1

Introduction and conduct of inquiry

Referral of inquiry

1.1        On 25 November 2009, the Senate referred the following matter to the Community Affairs References Committee for inquiry and report by 2 September 2010:

Access to planning options and services for people with a disability to ensure their continued quality of life as they and their carers age, and to identify any inadequacies in the choice and funding of planning options currently available to people ageing with a disability and their carers.

1.2        When the Governor-General prorogued the 42nd Parliament on 19 July 2010 the committee was yet to hold public hearings for the inquiry. The committee therefore determined that it was unable to provide a comprehensive report and that it would reconsider matters related to the inquiry in the event that it was re-referred to the committee in the new parliament.

1.3        On 30 September 2010, the Senate re-referred the matter to the committee for inquiry and report. However, the re-referral included changes to the committee's terms of reference. The new terms of reference were as follows:

Access to options for and services to assist people with a disability and their carers to plan for the future, including:

(a)        Inadequacies in the choice and funding of planning options currently available to people ageing with a disability and their carers;

(b)        Ways to ensure the continued quality of life for people with a disability as they and their carers age;  

(c)        The types of options and services that could be developed to help people with a disability and their carers to plan for the future; and

(d)        Any other matters which would assist carers to find an adequate and appropriate answer to the question: 'What happens when I / we can no longer care?'

1.4        The reporting date for the inquiry was 31 March 2011; this date was subsequently extended to 21 June 2011.

Conduct of inquiry

1.5        In accordance with usual practice, the committee advertised the inquiry in The Australian and on the internet. The committee also wrote directly to a number of organisations and individuals inviting submissions to the inquiry. In total, the committee received 87 submissions: 76 submissions were received during the 42nd Parliament and 11 during the 43rd Parliament.

1.6        The committee also determined that submissions received during the 42nd Parliament would continue to be considered. Additionally, those who submitted to the inquiry during the 42nd Parliament were invited to re-submit in the event that they wished to update or amend their earlier submission, responding to the new terms of reference.

1.7        The committee held five public hearings: Canberra (8 November 2010); Melbourne (29 November 2010); Sydney (30 November 2010); Toowoomba (1 December 2010); and Canberra (18 February 2011). The committee took evidence from people with disabilities, carers, organisations representing people with disabilities, peak bodies, service providers, and state and federal government departments.

Related inquiries

1.8        The Productivity Commission is currently conducting an inquiry into Disability Care and Support. This is intended to examine the costs, benefits and feasibility of alternative approaches to funding and ways of delivering long-term care and support for people with severe or profound disabilities. The Commission will present its final report to government by 31 July 2011. Information on the Productivity Commission's inquiry can be found at:

http://www.pc.gov.au/projects/inquiry/disability-support.

1.9        The Draft Report of the Productivity Commission, released on 28 February 2001, made a series of important recommendations:

  • There must be a shift from a welfare to an insurance philosophy;
  • Responsibility for the funding of long-term care and support should be the responsibility of the Commonwealth;
  • A three-tiered National Disability Insurance Scheme (NDIS) should be established;
  • Funding for the NDIS should come from consolidated revenue via a guaranteed formula;
  • A new federal agency—the National Disability Insurance Agency—be established to oversee the NDIS;
  • The proposed NDIS support scheme would be portable across state and territory borders (as would the assessment of need).

1.10      The committee endorses in principle the recommendations contained in the Productivity Commission's Draft Report. The committee agrees that a National Disability Insurance Scheme would provide significant new resources as well as flexibility and choice for people living with disability. The committee also notes that submitters and witnesses to the inquiry expressed their broad support for a national disability insurance scheme, arguing that an NDIS would provide much needed reform and a mechanism for the creation of individualised support packages.[1] The committee notes however, that until the government responds to the Productivity Commission report, the states and territories must continue to fulfil their obligations under the National Disability Agreement (NDA).

1.11        The committee also notes that the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) recently engaged Allen Consulting Group to undertake an International Review of Future Planning Options for carers of people with disability. The purpose of the project was to identify and analyse international approaches that encourage private financial provision and supported future planning. Eight countries, in addition to Australia, were included in the research: Canada, United States, United Kingdom, Ireland, New Zealand, Finland, Sweden and Germany. Released in 2009, the report recommended that the Australian government consider: the implementation of financial savings accounts for children with disability; a government-funded matched saving component be added to Special Disability Trusts; and implementing a future planning program similar to that of PLAN in Canada.[2]

1.12      The committee also notes the recent parliamentary inquiry undertaken by the House of Representatives Family, Community, Housing and Youth Committee into support for carers. Who Cares...? Report on the inquiry into better support for carers identifies strategies to increase the capacity of carers to make choices within their caring roles and to support carers in effectively planning for the future. The Senate Community Affairs References Committee notes that, among its recommendations, the House committee recommended that the Minister for Human Services direct Centrelink to establish a dedicated Carer / Disability Unit with staff to provide specialist advice to carers and care receivers, including those with complex care and family issues (Recommendation 22). Further, that the Minister for Families, Housing, Community Services and Indigenous Affairs and the Minister for Health and Ageing undertake pilot studies to test the potential for the Australian Government's funding for carer respite and in-home assistance to be re-allocated directly to carers through 'individualised funding programs' (Recommendation 35).

Scope of inquiry

1.13      Much debate around disability support focuses on questions of funding, policy settings and regulation, or the macro-level planning offered by government. In its consideration of the costs, benefits and feasibility of a national disability insurance scheme, the Productivity Commission seeks to contribute to higher-level disability reform. The committee has not considered matters related to the establishment of a national disability insurance framework. Rather, it is concerned with the planning that takes place below, alongside or in concert with this macro-level planning. That is, the planning provided by parents, relatives, spouses, friends and other members of the community, who monitor the quality of care, the availability of services and who seek to make provision for the future. Specifically, the committee seeks to identify ways to support individualised planning through the provision of funding and professional services to assist families develop life-long and sustainable care plans for the future. In so doing it seeks to assist carers find an adequate and appropriate answer to the question: 'What happens when I / we can no longer care?'

Rates of disability and current funding arrangements

1.14      The main source of information about rates of disability and the number of carers of people with a disability is the 2009 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers. The ABS data indicated that 4 million people or 18.5 per cent of Australians reported having a disability.[3]

1.15      The prevalence of disability in Australia has fallen 1.5 percentage points since the last ABS survey in 2003. In 2003, 20 per cent of Australians had a reported disability. After removing the effects of different age structures the age standardised rate also fell by 2.1 percentage points. The rate of profound or severe limitation in the core activities of communication, mobility and self-care declined, from 6.3 per cent in 2003, to 5.8 per cent in 2009. Much of the decrease in the prevalence of disability between 2003 and 2009 is due to a decline in the proportion of Australians disabled by physical health conditions, such as asthma and heart disease.[4]

1.16      The ABS also estimated that there were 2,632,100 carers in Australia who provided regular or sustained care to another person. This represented 12.2 per cent of the Australian population. Almost a quarter of these carers (771,400 people) were 'primary carers', that is, they provided the most care to another person with a severe or profound core activity limitation.[5] These statistics reinforce the urgency of the planning challenge. They reinforce that in the next decade many carers will either die or find themselves unable to care. As the size and capability of the informal care sector declines, it is essential that the community finds alternative ways to support people with disabilities.

1.17      In 2009–10, the Commonwealth Government provided funding of approximately $1.7 billion to the disability sector, while state and territory governments provided funding of approximately $4.5 billion.[6]

1.18      The National Disability Agreement (NDA) came into effect on 1 January 2009. Under the NDA, the Commonwealth has responsibility for the provision of employment services for people with disability and income support. State and territory governments have responsibility for delivering other specialist disability services including: accommodation, respite, community support and community access services.

1.19      Under the NDA, over the next five years, the Australian Government will provide $5.3 billion to assist state and territory governments to deliver specialist disability services. Of this, $408 million will go to assist with the National Disability Reform Agenda. Some of the key reforms under consideration include:

  • 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;
  • Improving the capacity of service providers to better develop and train 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.[7]

1.20      Funding and the legislative and policy frameworks surrounding disability will be explored by the committee further in Chapter 3.

1.21      The committee also notes the National Mental Health Reform package in the Federal Budget 2011–12. The committee supports the establishment of a National Mental Health Commission and endorses the allocation of $571.3 million, over five years, for a single point coordinating clinical and social support services for people with severe and debilitating mental illness. The fact that comprehensive multidisciplinary assessments will be provided for health and non-health needs, to establish tailor-made care plans, is an important reform that would also be of value to the disability community.[8]

Structure of report

1.22      In the following chapter the committee will examine the challenges facing the disability sector. It describes the current disability sector as being underfunded, difficult to navigate and crisis driven. The committee then proceeds to consider the implications that this has for disability planning.

1.23      In Chapter 3 the committee will consider the legislative and policy frameworks currently in place to provide national disability support. The chapter will examine the division of responsibility between Commonwealth and state and territory governments and the interaction between the disability and aged care sectors. This chapter will also examine some of the relevant rights frameworks, in particular, the United Nations Convention on the Rights of People with Disabilities (CRPD). This will be followed by consideration of Australia's national carer recognition legislation and the national carers recognition framework. Chapter 3 will also document the forms of planning support offered by Commonwealth and state and territory governments.

1.24      Chapter 4 will give specific consideration to planning issues. It will consider why lifelong and sustainable planning is important and how planning might be done to support the various transitional life stages—school, work and retirement—but also, that it consider matters such as social engagement, recreation and each individual's ambitions for the future. Chapter 4 will also consider premature ageing for people with physical and intellectual disabilities.

1.25      Chapter 5 follows up on the discussion in Chapter 2, examining the challenges facing the disability sector, to consider the evidence identifying the major barriers to planning. In so doing, it documents the barriers to planning for different disability groups, Aboriginal and Torres Strait Islanders, non-English speaking people and people living in regional and remote areas.

1.26      Chapter 6 will provide a discussion of the important planning work that is currently taking place in the non-government or community sector and make recommendations to improve disability planning across Australia.

Acknowledgements

1.27      The committee thanks all those who contributed to the inquiry through making submissions, providing additional information or appearing before it to give evidence. The committee is particularly grateful to those who made special travel or respite care arrangements to attend public hearings.

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