Making disability support work across real lives

As a researcher specialising in the health of people with disabilities, Anne Kavanagh is better versed than most in the ins and outs of Australia’s National Disability Insurance Scheme (NDIS).

But even she finds the reviews of her autistic son’s care plan stressful.

“It’s quite traumatising to be honest,” she says. “So much of our life is contingent on having a plan that meets his needs.

“He’s been an NDIS participant for 18 months and we are now having a review for his fourth plan. Having said that, the NDIS has really opened up lots of new opportunities for him and our family that weren’t there before.”

The worries don’t end there. Like most parents of children with disabilities, Professor Kavanagh is concerned about her son’s future, and frustrated by the options offered by an education system that is “largely failing people with disability.”

“He just loves watching baristas, and would be so much happier in a training program learning how to make coffee than spending time in the classroom,” she says.

“For me, the big issue as a parent is the low expectations that people have of children with disabilities and it’s a real lost opportunity. That focus on what you can’t do rather than on what you can do is a real downer.

“We need to shift the conversation to what people with disability can do, away from this deficit focus we currently have.”

But despite these experiences, Professor Kavanagh is optimistic about the potential to improve disability support and inclusion in Australia; something the new interdisciplinary Melbourne Disability Institute at the University of Melbourne aims to do. The Institute is headed up by Professor Kavanagh and former Nation Disability Insurance Agency Chair, Professor Bruce Bonyhady.

“We are at an extraordinary time of change in the disability sector in Australia,” says Professor Bonyhady.

“It is partly brought about by the NDIS, partly by the fact Australia is now a signatory to the UN Convention on the Rights of Persons with Disabilities, and also because we’ve got a comprehensive National Disability Strategy in place now.

“The framework for creating opportunities for people with disability is there in a way that it’s never been before.”

The Institute, which brings together researchers from across the University to work with partners in the disability sector, government and other research institutes, will have several areas of focus.

“We already know what many of the big issues are for people with disability,” says Professor Kavanagh.

“They are more likely to be in inadequate housing, our employment rates for people are particularly low in Australia, and we need to think differently about how our education system caters for kids with disabilities.

“Our Institute will take a ‘life course’ perspective, considering how matters like education, employment, housing and social participation are interlinked across someone’s lifetime. In particular, it’s important we consider key transition points – when people move in and out of school, into employment and the transition to retirement. We often drop the ball at these points.”

For both Professors Kavanagh and Bonyhady, the starting point for the Institute is data – in particular linking existing databases to provide more insight into how people with disability are faring.

“In the pre-NDIS world the data we had on disability was patchy, but now, thanks to the NDIS, Australia is building the best population-based longitudinal disability database in the world, and it is growing day by day,” says Professor Bonyhady.

As Professor Kavanagh says, “Getting access to more of the data on what’s happening out there will make a huge difference. Without it we’re working in a vacuum.”

In particular, researchers see value in integrating NDIS data with data from other sources like the Australian Bureau of Statistics, the Department of Social Services and from outside government, including unique data sets which are held at the University of Melbourne.

“This offers great potential to answer some thorny public policy questions,” says Professor Kavanagh.

“In particular, it’s important we understand more about what’s happening with NDIS and non-NDIS participants – who gets what, who qualifies and who doesn’t.”

For Professor Bonyhady, the opportunity to operate in an academic environment and to be able to build new partnerships to address major systemic and strategic issues is particularly exciting.

“Our overwhelming priority while I was Chair of the NDIA, was to bring 460,000 people into the NDIS as quickly as possible on a very ambitious timetable and in an environment where the agency didn’t have enough staff. As a result, there was simply not enough time to deeply examine a whole series of major issues, like housing policy or links with education.

“To now be able to operate strategically on those key issues, like supporting people not in the NDIS to make it equitable for them and ensuring that services like health and education are as inclusive and accessible as possible, are really important issues.

“It’s exciting to be working with academics who have interests in these areas. Our goal is that we make the maximum positive difference to the lives of people with disability, their families and carers – and we’ve got the resources and the ability to leverage them.

“It’s an extraordinary opportunity and I am very grateful to the University.”

The Melbourne Disability Institute aims to improve the lives of people with disabilities through interdisciplinary research, education, policy development and public engagement and launches on Monday May 28. Keep up to date by following Professor Kavanagh on Twitter @AKavanagh_melb. This article was published on Pursuit.