Senate Community Affairs Legislation Committee (part 2 of 2)
31 July 2026
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Senate Community Affairs Legislation Committee Australian Parliament
00:00 - 03:16
Speaker 71
Writer and disability advocate. I'm privileged to chair the Justice and Equity Centre's NDIS Systemic Advocacy Working Group made up of disability organisations from around Australia, and I host the Building Inclusion podcast on Australia's disability strategy, which is funded by the Department of Health. I'm also a person with a disability and a parent of a child who is an NDIS participant. I was diagnosed with my disability when I was about 18 old. This was somewhat of a shock to my parents whose experience with disability was limited and whose knowledge of, in particular, dwarfism was confined to outlandish fantasy portrayals like the Munchkins of Oz and the Oompa Loompas of Willy Wonka.
They were told I'd need surgical intervention, but perhaps they didn't quite comprehend the ramifications, particularly mental health impacts, of deliberately breaking and realigning my young legs. I spent most of my childhood in Regional Victoria in insecure housing with my single mum and my younger brother. Mum tried her best, but things weren't always easy. Had the NDIS existed then, my trajectory might have been significantly different. It's likely I would have required less surgical intervention, had greater supports within my household, education and potential employment, and would be physically and mentally healthier as an adult.
When my own daughter was diagnosed with the same condition I have, I felt proud that she was going to have the unique perspective of the world that disability offers. And I knew that we could provide easier pathways for her to living a fulfilling life due in no small part to the NDIS. I'd watched prime minister Julia Gillard in parliament say that the scheme's intent was for people with disability to exercise choice and control over their supports. It genuinely was nothing about us without us. However, the process of proving eligibility and then wading through the bureaucracy to get what should be fairly simple physical supports for my daughter has been nothing short of bewildering.
Rather than choice and control, the scheme is consumed by a deficit model. We've spent eye watering amounts on medical reports, often accompanied by a note that says, sorry that language is so confronting. My daughter's lifelong diagnosis is not a complex one, but the constant requirements to prove she is disabled enough has, for me, highlighted that inefficiencies in the system do exist. Those inefficiencies are not that there are too many people on the scheme or that we're asking for too much, but that disabled people are not being listened to. And now, with this bill, people with disability are told that we're going to have to prove again that we're disabled enough.
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