National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2405
29 May 2026
Submission to the Community Affairs Legislation Committee Australian Senate
Please note: I am happy for you to publish my submission but please refer to me as Sarah M, and withhold my address etc.
Dear Members of the Committee
I am writing to you to express my grave concerns about the ‘National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026’. In particular I am very concerned about the provisions that relate to access requirements, including that an impairment must be ‘permanent’, and that people must “try all appropriate treatment” before they can access the NDIS.
I am the parent of Robin (not their real name), a wonderful, loving, smart and creative young person, who has significant disability and several diagnoses: autism (level 2 support needs), ADHD, Hypermobility Spectrum Disorder (likely hypermobile EDS, which is generally only diagnosed after 18) and Orthostatic Intolerance (similar to POTS, or Postural Orthostatic Tachycardia Syndrome). All of these diagnoses tend to be comorbid, we have since discovered, and have a genetic basis.
Robin finally got their diagnoses in the past three years, after many many years of misdiagnosis and distress. This and their symptoms meant that for around four years, Robin was disengaged from school and experienced very significant mental health issues including self-harm.
Obtaining these diagnoses has taken years of advocacy, research, waitlists and many thousands of dollars. Getting the diagnoses been a relief, in that we now understand why Robin experiences daily debilitating pain, fatigue, nausea, insomnia, dislocations and other injuries, massive regular debilitating pain flares and many other symptoms. However the diagnoses have also brought huge worries about Robin’s future, as their conditions are genetic and worsen over time.
Despite constant research about how to manage their conditions, and Robin seeing specialist and allied health practitioners, their physical challenges have only gotten worse in the past three years. Through sheer determination they have re-engaged with education through a flexible learning environment, but pain, nausea and fatigue means they can usually only make it to one or two days per week, and they often go weeks without getting to school.
When Robin was first diagnosed, we were advised that they would be eligible for NDIS based on their autism diagnosis, but that it was much less certain that they would be able to get NDIS support for their physical disabilities, as they arise from what are classed as “chronic illness”, even though they are genetic, lifelong and degenerative.
However it is their physical disabilities that require support. There is absolutely no way that they could live independently, and their symptoms mean that they spend many days of each week in bed. When they get up, they use either crutches or a wheelchair, and must carefully plan and limit their activities.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2405
They can’t prepare food independently, and often need help bathing or dressing. Robin sees physiotherapists who specialist in hypermobility and dysautonomia, and has other specialists and an excellent GP. They have made it clear that we can really only manage Robin’s conditions and disability – there is no real treatment and certainly no cure.
My partner and I provide Robin with daily significant care and support. We really struggle at times, especially as Robin’s medical expenses mean we both have to work as many hours as we can. We have hybrid jobs allowing some work from home, and we do our best to balance care and work. But it is exhausting and stressful, and our expenses significantly outweigh our income.
I was half-way through an NDIS application when the proposed cuts were announced, and I am worried that they now mean even less chance of success. Robin really needs core supports as well as allied health – these will be especially crucial when they are older. My parents used to help out with Robin’s medical expenses but they both sadly passed away last year, and my small inheritance is nearly finished. After that, I’m not sure how we will manage. We worry a lot for Robin’s future – especially for how they are going to manage daily life as we get older and after we pass away.
I have two major worries about the proposed Bill:
• The Bill seems to imply that Robin won’t be able to get NDIS if they are having “treatment” to manage their symptoms, even if they continue to have very significant impairment. Given the nature of their conditions and disability, this seems likely. We are accessing every form of treatment recommended to us, yet so far their condition has only worsened. • I’m also concerned that requirement may mean that if there’s some treatment that we’re unable to access, likely due to expense or waiting lists, Robin can’t access NDIS?
Robin’s conditions are genetic and lifelong. They have very significant impact on their functional capacity, such that they need core supports (currently provided by us, their parents) and allied health supports. I definitely agree that access to NDIS should be based on need and function. But this provision in the proposed Bill actually seems to undermine that, and will potentially block someone like Robin who genuinely needs it.
I hope that you will read and consider our story. The NDIS is a wonderful institution that supports people with disabilities like my amazing teen to have a good life, and contribute in their community. It’s an investment in people, that repays many times over. With support Robin will finish school, and hopefully be able to work part-time. They are already a fantastic volunteer as a youth disability advocate, when they are able, in youth music services. In all the debates people with disabilities are often talked about as takers – but actually the many disabled people people I know give enormously in their communities, and Robin is no different.
Thanks for your consideration.