House debates

Monday, 31 October 2011

Adjournment

Royal Life Saving Society of Australia

10:37 am

Photo of Wyatt RoyWyatt Roy (Longman, Liberal Party) Share this | Hansard source

Reform of the disability sector is something that I have been passionate about for a long time. Growing up alongside a friend who suffers from spinal muscular atrophy I saw first-hand the failings of the disability sector and the urgent need for practical action to improve this—the urgent need for a system that is less bureaucratic, recognises need and empowers individuals.

So when I heard about Justin Jackson, a 19-year-old university student from my electorate who suffers from cerebral palsy, I was able to empathise with the difficult situation he and his family found themselves in, trying to access the essential care that Justin needs. Justin is an industrious legal studies student who, like any young person, has goals and plans for his life. In order for Justin to maintain independence in his declining condition, he needs a specialised wheelchair to accommodate his spine and to take the strain off his body. Justin's condition does not allow him to easily participate in family activities, and it is nearly impossible for him to walk even a short distance on crutches. A specialised wheelchair is essential. Yet, after months of inquiries with the state department, Justin was told that there was no assistance available to him for the type of wheelchair he desperately needs. At 19 years of age, Justin falls through the cracks of a disability system that is overly bureaucratic and does not recognise need. He is not eligible for the support that an 18-year-old would be eligible for, and his condition is not considered to be severe enough to warrant the support that someone older might be eligible for. The longer Justin struggles without a wheelchair, the faster his health declines and the less independence he has. Like many in my electorate, Justin's family are just not in a position to be able to fund a custom designed wheelchair suitable for his needs.

After months of uncertainty, and out of desperation and frustration with a broken system, Justin's mother approached me for help. The good news is that, after three hours and a series of phone calls, some very generous individuals in our local community dug deep to bridge the gap left by the government in this area, and they raised the money needed to give Justin his wheelchair. This was a fantastic example of the community coming together to support those in need. Those suffering disabilities are made to jump through a series of bureaucratic hoops, and often, after that long, drawn-out process of jumping through those hoops, many are still not able to get the help that they so desperately need, leaving families and individuals feeling desperate and without hope for the future.

Unfortunately, Justin's story is not uncommon. That is why the coalition support, in principle, a national disability insurance scheme—a system that would empower individuals with the choices that they rightly deserve, a system that would offer a hand-up rather than a handout. The coalition welcome discussion and action on the disability sector. I do not want to see others like Justin have to struggle to get the care that they so rightly deserve.

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