What would Grandma say?

(a) it is likely to cause harm to the participant or pose a risk to others;

It is not as if we lack bright, young researchers ready and willing to take research to the public, but do we celebrate our scientists in Australia? In this country, we are more likely to be able to name footballers or cricket stars than scientists. The public also need to pressure politicians to rationalise the number, extent and value of tax expenditures and other subsidies in the economy.

The tax expenditures prop up a vast charitable network, much of which now provides the service infrastructure for the NDIS. Some would say that is a good thing, but not only are governments losing billions in direct revenue, there is something about the NDIS that needs to be confronted. It assumes lifelong disability and makes its plans from this starting position.

The NDIS webpage makes this clear when it says that:

the NDIS takes a lifetime approach (i.e.: seeks to minimise support costs over a participant's lifetime) by investing in people early to build their capacity to help them pursue their goals and aspirations resulting in greater outcomes in later life.

While the NDIS Agency may claim it wants people to have 'greater outcomes,' this is done as cheaply as possible and always with the participant remaining disabled. This is particularly obvious in the NDIS Agency's approach to research. Research is something between the Agency and the disability sector; participants, families and the wider public are notable for our absence from this process. We might demand more from an Agency and, a supposedly enhanced, innovative disability sector.

We might also unfavourably critique the lack of ambition in the NDIS, given that supporting a participant's functional improvement is beyond the Scheme's scope. Yet, I suspect functional improvement is what many participants and families might have expected to be an aim of the NDIS. My Grandma had a clarity on this point four decades ago, which is strangely missing now, in this supposedly enlightened, Informed age.

Neither the NDIS, it charitable partners or government 'got the memo' about the real potential for public interest or involvement in research. Regardless of how much the NDIS Agency says that participants are central to its work in some areas, we are not central to its research agenda. To invite us there would threaten the fiscal and policy consensus between the institutional arms of government, charity, and other providers. In the end, where does this leave NDIS participants and our families? On the outer when it comes to research, still disabled and still with a lifetime dependence on charity.

What would Grandma say?