Making disability support work across the life course
The National Disability Insurance Scheme is a game changer, but the challenge is to make it work across people’s life course, from education and housing, to social participation and employment
As a researcher specialising in the health of people with disabilities, Anne Kavanagh is better versed than most in the ins and outs of the 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. And this is the fourth plan he’s had.”
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 people 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 services in Australia; something the new interdisciplinary Melbourne Disability Institute she is heading up with former NDIA Chair Bruce Bonyhady aims to do.
“We are at an extraordinary time of change in the disability sector in Australia, 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,” says Mr Bonyhady.
“The framework for creating opportunities for people with disability is there in a way that it’s never been there before.”
The Institute, which brings together researchers from across the University to work with partners in the disability sector and government, 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 we had almost no data on disability, but now, thanks to the NDIS, Australia probably already has probably the best disability database in the world, which is growing day by day,” says Mr Bonyhady.
“Getting access to more of the data of what’s happening out there will make a huge difference,” says Professor Kavanagh. “Without it we’re working in a vacuum – we don’t know have the data to answer those key questions.”
In particular, researchers see value in integrating NDIS data with other data from sources like the Australian Bureau of Statistics and the Department of Social Services.
“This offers great potential to answer some thorny public policy questions. 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,” says Professor Kavanagh.
For Bonyhady, the opportunity to operate in a new, less constrained, environment is particularly exciting.
“Being in government brings great responsibility and it also comes with very significant constraint,” he says. “We had to bring 460,000 people into the NDIS as quickly as possible on a very ambitious timetable. As a result there was simply not the time to look at a whole series of other 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.
“Working with academics who have interests in these areas is the excitement of being here. My only constraint is that we make the maximum difference – and we’ve got resources and the ability to leverage them. It’s a great opportunity.”
The Melbourne Disability Institute aims to improve the lives of people with disabilities through interdisciplinary research, education, policy development and public engagement. It launched on Monday 28 May 2018.
Keep up to date by following Professor Kavanagh on Twitter @AKavanagh_melb.
Professor Anne Kavanagh | Professor Bruce Bonyhady