Will the NDIS and individualisation of disability services enhance human rights?

By Helen Dickinson
Steve Johnson/flickr

The introduction of the $22 billion National Disability Insurance Scheme (NDIS), which will progressively roll out countrywide from July of this year, has meant that barely a day goes by without some sort of media discussion relating to this policy or issues of disability more broadly.

The NDIS is a bold scheme introduced on the basis that it should improve the outcomes and life chances of people with disabilities. National Disability Services goes as far as to argue that “human rights underpin the NDIS legislation and are the foundation on which the shift to self-directed approaches is built”. Yet the evidence from Australia and overseas suggests that individual funding systems are not necessarily able to secure human rights for people with disabilities and in practice often deliver a rather shallower form of rights relating to consumer choice.

For many, the NDIS is an incredibly welcome scheme. For too long, Australian disability services have been underfunded, inflexible and built around the needs of the system rather than those of the individual. An OECD study found that Australians ranked lowest in terms of quality of life for disabled people. Other data sources echo these findings, showing that Australians with disabilities have low levels of income and labour force participation. People with disabilities experience social exclusion and significant levels of violence. Yet, there is growing consensus that while the NDIS is a welcome addition it will not go sufficiently far in securing human rights for people with disabilities.

It is nearly a decade since the introduction of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), the first legally binding document directly addressing the rights of people with disabilities. The CRPD binds states to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities and to promote respect for their inherent dignity”. The CRPD has brought national and international attention to the need to address the multiple inequalities that people with disabilities face.

In today’s society it is increasingly recognised that we are all unique individuals with different preferences, needs and desires. Similarly, people with disabilities should not simply be assigned to services according to their impairments (as government services have traditionally done). People with disabilities also have very different aspirations, goals, assets and deficits to one another and should be included in society on this basis.

In disability services, we have seen the emergence of individual funding schemes as one mechanism to personalise disability services and in the process support people to live the kinds of lives that they want to. The idea is that if budgets are devolved to individuals, then they can better determine what services are most appropriate, producing better outcomes and possibly efficiencies through the eradication of waste.

In the UK, direct payments were introduced at the end of the last century to provide individuals with a cash payment in lieu of disability services. Since this time there has been a gradual expansion of this scheme to personal budgets for all those in receipt of care services and experiments with joint health and social care budgets in some specific service areas. Similar sorts of schemes have been developed in other countries and in Australia a number of states have already established individual funding schemes for people with disabilities (e.g. Victoria’s Individual Support Packages).

Many of the services and programs that have the potential to contribute to full inclusion that many of us enjoy, sit outside of the NDIS.

The introduction of the NDIS is an attempt to expand these state-based developments so that all people with disabilities who meet the appropriate eligibility requirements will have the opportunity to have a greater say in their care package.

Individual funding schemes are so attractive because they appeal to groups of all political and philosophical persuasions. For the left, it is about human rights and enhanced citizenship. For the right, it is the ultimate expression of consumer choice at the heart of welfare services. In practice, it is a challenge to develop a system that can deliver all of these things. Human rights protection and market-driven consumer systems are unlikely bedfellows.

It is yet to be seen what kind of system the NDIS will develop into and the implications of this for people with disabilities. One concern is the lack of political appetite to truly support people with disabilities to make different sorts of choices around their care services. Evidence from other countries suggests that real change has only really been achieved where individuals with disabilities are able to use their budgets in creative ways that differ significantly from traditional care service patterns. These differ greatly from the sorts of case studies that are currently housed on the NDIS website and which centre on the individual’s ability to procure equipment, training courses or transportation. But even where individuals are able to use budgets in creative ways, they are not always able to address broader barriers that pertain to inclusion.

The goal of the NDIS is for individuals to become better integrated in their communities, largely through employment. The budget of the NDIS is substantial but only funds a limited set of care needs: employment, health, education and housing remain funded through existing state and federal arrangements. That is, many of the services and programs that have the potential to contribute to full inclusion that many of us enjoy, sit outside of the NDIS.

If the NDIS is to truly make a difference in terms of the rights of people with disabilities, it will need to go beyond care services. Without changes to structural factors that contribute to the inequalities of people with disabilities, the NDIS risks offering limited consumer rights with no natural link to greater societal inclusion, nor will it counter the significant barriers that people with disabilities face in accessing their human rights.

As we have long known, people do not live their lives according to the sort of silos that we typically use to organise government services.  The reality is that people with disabilities tend to experience most starkly any failures to collaborate across government agencies and programmes. Given its focus, the NDIS is unable to fully address these issues, and without significant change will struggle to fully realise human rights for people with disabilities.