When considering the National Disability Insurance Scheme (NDIS) the most important voice should always be the participants with lived experience of disability. These individuals might be the quietest Australians.
For this voice of participants to be heard, we need to be mindful of having a new National Disability Strategy and National Disability Data Asset that are fit-for-purpose and mindful of human rights considerations.
Comprehensive, independently-obtained, objective evidence concerning disability aids the development of good disability policy.
In this respect, the annual market survey, “How Is The Disability Sector Faring?” produced by the Centre for Social Impact for the peak body for disability providers, National Disability Services, makes an important and thoughtful contribution to the development of national disability policy.
But the voice of providers, some of whom have sophisticated government relations functions, should never surpass that of participants.
The clear justification for the NDIS is based on economic principles and Australia’s values of diversity, inclusion and respect for human rights.
The role of providers in the NDIS must be seen within the context of the entire scheme and the overarching National Disability Strategy.
The NDIS is an uncapped scheme that is demand-driven and is intended to assist the 10 per cent of Australians who have a disability. However, the scheme is supply-constrained.
When an NDIS participant receives funds they can, in accordance with their plan, buy goods and services. Many of the goods and services are highly regulated to ensure safety and respect for human rights. But the goods and services also need to be suitable, convenient and available in a timely way. The NDIS regulates the unit price of goods and services, in part, to ensure participants are not taken advantage of. In an ideal world, participants would have choice and control.
The Centre for Social Impact Survey highlights issues that constrain supply of goods and services. If there are effectively no goods or services to supply, there is no meaningful choice or control for participants. This is one reason why we still have young Australians entering residential nursing homes – even with funding, there is no accommodation available for them. It is also a reason many participants have unspent funds in their plans.
But the role of the National Disability Insurance Agency (NDIA) is a difficult one. The Banking Royal Commission illustrated how businesses and not-for-profit organisations can take advantage of vulnerable consumers and, individually or collectively, seek to maximise returns at the expense of those consumers. Disability-related businesses or organisations can have similar motivations. The NDIA needs to encourage providers to enter the market, maintain scheme viability, ensure there are services for people with complex support needs and, above all, provide meaningful long-term benefits to participants.
Some providers will leave the market and be unhappy. Yet others will enter, as the Centre for Social Impact Survey highlights. The workers for a provider may go elsewhere. There is no guarantee of business and any return on investment should be a reasonable one.
We are having a Disability Royal Commission because many previous practices of providers were a gateway to violence, abuse, neglect and exploitation of people with disability. Service providers have and will need to change and evolve.
The role of the NDIS Quality and Safeguards Commission is clear, but it is also important that participants have a meaningful choice and that they are supported to exercise it themselves. The National Disability Strategy was developed in 2010 and will be revised this year. It is a decade-long strategy that applies to all Australians, and seeks to provide policy guidance at a Commonwealth, state and territory level for all people with disability, not just those on the NDIS.
An aspect of the revised strategy should be to encourage Australians to work with people with disability and to provide goods and services to people with disability. But crucially, the revised strategy must track implementation and collect more comprehensive data than the previous iteration.
Recently, funding for the formation of the National Disability Data Asset was announced. This is an excellent initiative. To have an effective disability policy, we must measure outcomes for people with disability (such as education, employment, housing, respecting fundamental human rights and health) and provide comprehensive data on the lives and experiences of all people with disability, not just those currently on the NDIS. The view of providers must be balanced against this view.
A comprehensive National Disability Data Asset that is mindful of the need to consult people with disability directly will facilitate Australians with disability being heard.
Dr Ben Gauntlett is Australia’s Disability Discrimination Commissioner.