No longer shut out: The National Disability Insurance Scheme and improved access to care
Samuel M. Harkin B Pod (Hons)* |

*Medical Student, The Australian National University

"Persons with disability are subject to multiple and aggravated forms of human rights violations, including the neglect of their most basic survival related needs. These human rights violations do not only occur in far off places that lack enlightened legislation and policies, or the resources needed to meet basic needs. They occur every day, in every region, of every state and territory in Australia. Virtually every Australian with disability encounters human rights violations at some points in their lives, and very many experience it every day of their lives. In 2009, in one of the most enlightened and wealthiest nations in the world, it is possible for persons with disability to die of starvation in specialist disability services, and to have life-sustaining medical treatments denied or withdrawn in health services."

T

his emotive and disturbing quote comes from the report ‘SHUT OUT: The Experience of People with Disabilities and their Families in Australia’ (1). The report highlights not only the human rights abuses suffered by Australians living with a disability, but also the significant financial challenges faced under the current disability-funding model. The report goes on to assert that the current funding model does little to address the concern that many medical and allied health sector employees have little understanding of the health needs of people living with disability, in part as a result of receiving insufficient appropriate training on how best to address the needs of those with a disability. These revelations beg the question, what is being done to improve the state of health care delivery to members of the Australian community with a disability?

In December 2011 and at the subsequent Council of Australian Governments (COAG) meeting in late July 2012 (2), the Gillard government announced the introduction of a National Disability Insurance Scheme (NDIS) (3). The NDIS is a national system, not dissimilar to Medicare, which would address major issues faced by disability services consumers, such as a lack of long term stability of funding and supports or lack of personally catered support which  leads to a wasting of resources, and an inability to move between states due to the fragmented nature of service provision. Further benefits outlined by the report included funding for a research arm of the scheme, with a view to providing high quality, evidence-based training and services which manage lifetime costs of care and optimise delivery (4).

 Development of the NDIS

In 2009, the Federal government commissioned PricewaterhouseCoopers (PwC) to prepare an independent review into the long-term implications and feasibility of an NDIS. This report was commissioned by the government in response to what it perceived as the gradually worsening function of the current disability welfare scheme, which absorbs approximately $20 billion per annum (5), without adequately meeting the life-long needs of the members of the Australian community with a disability, (approximately 4 million in 2003). The current system in Australia is fragmented, with funding coming via three main streams with very different characteristics:
- Income support, including the Disability Support Pension, the Carer Payment and the Carer Allowance;
- The “care and support” welfare system, whereby Commonwealth and State Governments allocate recurrent and growth funding to purchase and provide services and to pay benefits directly;
- The insurance system, whereby individuals pay premiums to guard against the risks of sustaining a disability, and the associated physical and financial hardships (5).

Beyond the recognised disability welfare system, people with a disability consume a disproportionate amount of services of other types[$](5). This, coupled with an ‘ageing population’ and correlation between age and disability[$*] means a significant proportion of Australia’s future budget expenditure will be required just to maintain the unsatisfactory human rights standards delivered under the current disability funding model. Evidently, this is not solely a human rights concern, but a financial issue requiring urgent action. Findings from the PwC report highlight developing socio-economic issues such as the loss of income generation, and deterioration of mental health status of ‘informal carers’ - the friends and family of members of the community with a disability (5). The costs of providing care to an aging population and to those with a disability are well recognised by the Federal government and a key area of concern with regard to sustainable funding of the healthcare system. Evidence of this was supported by international examples from Germany, Singapore and New Zealand cited in the PwC report (5). The report identified that some of the major issues with the current disability funding as:

  • A lack of central planning, and associated inefficiency due to lack of coordination between the many agencies involved across both Commonwealth and State;
  • Little opportunity for acknowledgement of community need;
  • A lack of a clear definition on disability, entitlements and eligibility for services, including links to other government services; and
  • Poor monitoring of service providers with respect to both service delivery and outcomes.

The issues raised could be overcome with a properly funded NDIS by:

  • Generating an appropriate funding model to ensure funds are channelled to do the most good for those in need;
  • Introducing a regulatory process for achieving an agreed approach to assessing eligibility and entitlement within a model which recognises individual potential and planning for people with a disability;
  • Establishing clear protocols for links with associated government services; and importantly,
  • Establishing clear guidelines and expectations of service providers, including evidence based training opportunities and requirements, and requirements of service reporting and accountability (5).

Following the PwC report, the Labor government then commissioned a report by the Productivity Commission, released by the Prime Minister Julia Gillard on 10 August 2011 (4). The report essentially examined the costs and benefits of replacing the current disability services system, and specifics of the implementation of a NDIS.

In response, the government allocated $1billion in the 2012/13 budget for the implementation of initial test sites in 2013, gradually increasing with a view to rolling out the scheme nationally from mid-2018 (6). The primary intervention approach to care provision for members of the community with a disability, coupled with the anticipated reduction in unemployment, is projected to deliver a 1% increase in Gross Domestic Product by 2050 (5). The scheme has, in theory at least, been greeted with bi-partisan support in Australia with the Federal Opposition committing to going forward with the scheme on the 2018 schedule should they win government (7). Trial sites have been agreed in the Australian Capital Territory, New South Wales, South Australia, Tasmania, and Victoria. Queensland and Western Australia have declined to commit to trialling the scheme to date.

Other stakeholders have been positive in response to the NDIS proposal. Disability groups have been unanimous in their support. Craig Wallace from People with Disability Australia says the NDIS “should be the beginning of the end of a funding lottery many disabled people face”, hoping the new system will help to relieve “the poverty that's related to disability” under the current “broken and broke” system (8). The ‘Every Australian Counts’ campaign, encompassing the views and support of over 500 advocacy organisations, specialist disability organisations, local governments, and community and corporate groups (9) states “The NDIS will revolutionise the way people with a disability, their families and carers are supported in Australia. It will replace all the current state and territory disability systems, because they don’t work. The NDIS will be a modern, person-centred support system, helping hundreds of thousands of Australians with disability and their families to have the opportunity to participate actively in their communities by providing targeted supports aligned to need.”

The Australian Medical Association has been calling for a Medicare style ‘safety-net’ disability scheme since 2009 with then president Dr Andrew Pesce stating “doctors are fed up with the inadequate early intervention and community assistance for people with disabilities, and many get frustrated at being unable to get assistance, care coordination and support services for their patients with a disability" (10). More recently, current President Dr Steve Hambleton has criticised state governments for the delay in accepting the federal government’s NDIS proposal, urging states to “Put the interests of people with a disability ahead of political squabbling” (11).

The Australian Federation of Disability Organisation’s (AFDO) ‘Human Rights Analysis’ states that the proposed NDIS will allow a “radical rethink” on the delivery of disability support, and how people with a disability “might be empowered to enjoy full inclusion and participation” (12).The report outlines that human rights obligations create a platform for aspirational claims that seek to make a more equal, more inclusive, less violent society, citing several human rights documents[$$] that, in its view, are “setting a strong footing for the NDIS within a rights landscape is a certain way to accelerate Australia towards a goal of a more just, equitable and inclusive society” (12). In terms of the legal rights of people with disability, the AFDO cites Article 12 of the CRPD, which “affirms an obligation on States to recognise and support the equal legal capacity of all people with disability” (12).

Conclusion

The introduction of an NDIS represents a major health care and human rights reform for people with a disability, ensuring access to and provision of long-term, specific funding for treatment and care for those who require it, not limited by the person’s financial situation. It also provides for increased evidence based training and practice to best facilitate service delivery, in turn increasing the quality of care provided to those accessing the scheme and ultimately contributing to a lessening of the multiple and aggravated forms of human rights violations experienced by those with a disability that were identified in the ‘Shut out’ report.


[$]Of Australia’s $100 billion annual health expenditure, an increasing amount, projected to reach 80% by 2020, is spent on people with a chronic or complex disease – people most likely to also have a disability

[$*]Over the next 40 years there will be a steady increase in the number of people with severe and profound disabilities - projected to rise from 1.4 million to 2.9 million (4)

[$$]‘The Convention on the Rights of Persons with Disabilities’ (CRPD) 'The International Convention on the Elimination of All Forms of Racial Discrimination’ ‘The United Nations Declaration on the Rights of Indigenous People’. ‘The Convention on the Elimination of All Forms of Discrimination Against Women’ ‘The Convention on the Rights of the Child’

 

References

  1. SHUT OUT: The Experience of People with Disabilities and their Families in Australia [Internet]. Barton: Australian Government Department of Families, Housing, Community Services and Indigenous Affairs and the National People with Disabilities and Carer Council, 2009 [cited 2012 August 10]. Available from http://www.fahcsia.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/shut-out-the-experience-of-people-with-disabilities-and-their-families-in-australia
  2. COAG Meeting Communiqué, 25 July 2012 [Internet]. Barton: Council of Australian Governments, 2012 July 25 [cited 2012 August 10]. Available from http://www.coag.gov.au/node/431#National_Disability_Insurance_Scheme
  3. Designing a National Disability Insurance Scheme [Internet]. Barton: Press Office of the Prime Minister of Australia, 2011 December 3 [cited 2012 August 10]. Available from http://www.pm.gov.au/press-office/designing-national-disability-insurance-scheme
  4. Disability Care and Support: Executive Summary [Internet]. Canberra: Productivity Commission; 2011 [cited 2012 August 10]. Available from: http://www.pc.gov.au/projects/inquiry/disability-support/report
  5. National Disability Insurance Scheme - Final Report [Internet]. Canberra: PricewaterhouseCoopers – Disability Investment Group, 2009 October [cited 2012 August 9]. Available from http://www.fahcsia.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/disability-investment-group/pricewaterhousecoopers-national-disability-insurance-scheme-final-report
  6. Funding the first stage of the National Disability Insurance Scheme – Media Release [Internet]. Canberra: Office of The Hon Jenny Macklin, MP, Minister for Families, Housing, Community Services and Indigenous Affairs and Minister for Disability Reform; 2012 May 8 [cited 2012 August 9]. Available from: http://www.jennymacklin.fahcsia.gov.au/node/1875.
  7. Coalition vows to deliver NDIS by 2015 [Internet]. Melbourne: ABC; 2012 July 30 [cited 2012 August 9]. Available from: http://www.abc.net.au/news/2012-07-29/coalition-vows-to-deliver-ndis-by-2018/4162112.
  8. Disability advocates hail NDIS breakthrough [Internet]. Melbourne: ABC; 2012 July 28 [cited 2012 August 9]. Available from: http://www.abc.net.au/news/2012-07-27/disability-advocates-hail-ndis breakthrough/4160616?height=100&ratio=1x1&width=100&utm_source=dlvr.it&utm_medi m=twitter
  9. Every Australian counts website [Internet]. Sydney: National Disability Services Limited; 2012 [cited 2012 August 10]. Available from: http://everyaustraliancounts.com.au/supporters
  10. AMA backs call for national disability insurance scheme [Internet]. Barton: Australian Medical Association Limited; 2009 October 7 [cited 2012 August 9]. Available from: http://ama.com.au/node/5011
  11. COAG drops the ball on National Disability Insurance Scheme [Internet]. Barton: Australian Medical Association Limited; c2012 July 25 [cited 2012 August 9]. Available from: http://ama.com.au/media/coag-drops-ball-national-disability-insurance-scheme-ndis
  12. NDIS Human Rights Analysis [Internet]. Melbourne: Australian Federation of Disability Organisations; 2011 May [cited 2012 August 10]. Available from: doc.afdo.org.au/NDIS_Human_Rights_Analysis_May_2011