[PDFlist] MAKING DISABILITY SUPPORT WORK ACROSS REAL LIVES

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 MAKING DISABILITY SUPPORT WORK ACROSS REAL LIVES

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

By Catriona May, University of Melbourne

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.
Navigating the disability support system can be stressful for families.
Picture: Getty Images

“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.
Why all jobs aren't equal for people with disabilities
Read more
<https://pursuit.unimelb.edu.au/articles/why-all-jobs-aren-t-equal-for-people-with-disabilities>

“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
<https://disability.unimelb.edu.au/melbourne-disability-institute> at the
University of Melbourne aims to do. The Institute is headed up by Professor
Kavanagh and former National 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.
Taking the pulse of the NDIS
Read more
<https://pursuit.unimelb.edu.au/podcasts/taking-the-pulse-of-the-ndis>

“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.”
Australia’s employment rates for people with disability are among the
lowest in the world. Picture: Getty Images

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.
Disabling ableism
Read more
<https://pursuit.unimelb.edu.au/podcasts/disabling-ableism>

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.
Fighting for disabled people's health
Read more
<https://pursuit.unimelb.edu.au/articles/fighting-for-disabled-people-s-health>

“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. It launches on Monday May 28.*

*Keep up to date by following Professor Kavanagh on Twitter** @AKavanagh_melb
<https://twitter.com/akavanagh_melb?lang=en>.*
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