The National Disability Insurance Scheme is a once-in-a-generation reform. Prime Minister Julia Gillard's announcement is fantastic news for people with disabilities and their families. However, it is vital that Australia gets the implementation right. And to get it right we will need much better information about whether people with disabilities are getting what they need and want from the new services.
Much of the media coverage has focused on the cost and sources of funds. As recognised by Gillard in her press release, all levels of government should contribute to financing the NDIS. But it is not simply about dollars or hours of service. What's really important is the participation and quality of life that the person with a disability experiences every day.
Australia's National Minimum Data Set monitors the delivery of disability services, who receives them and their support needs. Information from the NMDS was fundamental in making the Productivity Commission's case for reform.
Detailed data show that there is currently a vast shortfall of disability services but it does not tell us about the outcomes experienced by disability service users. We need an equivalent to the NMDS to provide information on outcomes to help ensure that services offer people with a disability decent quality of life and meaningful opportunities to participate in community life.
By way of example, each year in the United States the National Core Indicators program monitors services and outcomes for adult developmental disability service users in more than 20 US states. Importantly, the NCI obtains much information by face-to-face interviews with individuals who use these services.
With US colleagues, I recently analysed NCI information about adults with intellectual and developmental disability who live outside the family home, in settings such as group homes. We found that more than half of these people had no say about where they live and who they live with.
This is a violation of their fundamental rights. But it also results in lower levels of wellbeing and life satisfaction. People who did not choose who they live with reported more loneliness, were not as happy and liked their home less than others who chose their living companions.
These findings make common sense. But common sense is not enough. Without the information the NCI provides it would not be possible to convincingly identify this problem. We wouldn't know the scale of the problem. Nor would there be a benchmark against which to test the effectiveness of future reform efforts.
Australia must do far better than this under the NDIS. However, this sort of information is simply not available in Australia at present. This, too, has to change so we can properly understand the quality of services that NDIS dollars will buy.
There are many other important issues that need more work. There must be logical links between eligibility criteria and assessment tools. The focus should be on the individual's functioning and need for support, rather than simply looking at their diagnosis.
A major challenge will be to find fair ways to measure support needs so we can answer questions such as who deserves more funding because their needs are greater and how do we decide how much (more) they should get? Currently available methods of assessing support needs require more development, especially if they are to apply across a wide range of disability types.
In the words of Robert Kennedy ''There are those who look at things the way they are, and ask why . . . I dream of things that never were, and ask why not?''
It is now up to all of us to turn this dream into a reality in the everyday lives of Australians with a disability and their families. Fair methods of measuring the support needs of people with a disability, together with information about their participation and quality of life will help us realise the dream.