Submission 2736
Submission on the NDIS Amendment Bill
31 May 2026
I am a disabled person and a sociologist. I write as someone with both lived experience of disability and as someone with expertise in systemic forms of marginalisation and harm, the latter of which I believe the proposed changes to the bill represent.
I have been disabled with chronic illness since 2011, diagnosed six months into a Universitas 21 PhD programme at the University of Melbourne and the University of British Columbia. Despite the severeness of my illness, I suffered my way through the programme and various jobs, throwing all my spare money, time and energy into getting treatment and attempting to live without disability support. I frequently took periods of time off, had to work from bed or strange hours, and spent most of my time recovering from work in order to do more work. Over the years, this undoubtedly made me sicker, but I was trying to avoid disability support precisely because I heard it was so hard to get, and because, in my naivety, I didn’t want to be defined by my disability. I now realise what this has cost me.
In 2024, I was conducting fieldwork for my job, and caught COVID. It triggered a new illness, which combined with my previous illnesses, left me completely debilitated. I was bed bound for close to a year, and housebound ever since. I had to resign from my job, which I loved, have had to move to a new home after experiencing housing distress, and have gone into serious debt. I was previously a very active person - a surfer, swimmer, runner, yoga enthusiast - and had to stop. I was also a very social person and active member of my communities. Now, I am lucky to see a friend once every six months in my home.
I am not on the NDIS, however, I have been corresponding with my medical team and an NDIS support coordinator since late 2024 about joining it. I have not been able to follow up on this because my financial pressures were so severe I had to focus my attention on a. a DSP application and b. a Compassionate Release of Super application.
Both a. and b.took months and months to put together, due to issues with locating medical records from former clinics, making sure the wording and forms were filled out exactly as the ATO and Centrelink requested (and having to redo them several times), having to wait long wait times (and pay for!!) specialists, the complexity of my illnesses, and - of course - the fact I was so ill I could barely sit up to eat let alone compile paperwork. My mother has had to become my carer, but she is a pensioner with her own health problems, so my support is minimal.
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Submission 2736
At present, I have submitted my DSP and have just received notification that, despite a GP and 5 specialists writing in support of my condition/s and their severity, I will need to be assessed by a government-nominated doctor. The government wants to talk about financial waste - why doesn’t it start here? At the need for a separate doctor to verify what 6 doctors have already said? It seems to me that this is one obvious area where savings could be made.
I have submitted my application for compassionate release of super twice, and both times they have been rejected on small administrative issues. It is disillusioning how difficult it is to have my conditions validated by a government system and my requests for basic support accepted, in spite of 15 years of evidence, including up-to-date letters and documents.
I have felt incredibly helpless for two years, partly because of the illnesses, but more so because of the complete lack of support I have felt from the government. I feel like I have been left to wither away and die.
Hearing that the government planned to make cuts to the NDIS, a programme that is already, as far as I can tell, falling short of helping people who are disabled, left me genuinely aghast.
Needless to say: I do not support this Bill.
Having read the changes I am concerned about various issues.
The obvious one being the timeliness this is going to further add to the application process, as well as the additional administrative burden it will place on disabled people and their carers - both those already with NDIS and those trying to get onto it. The timeframes have been shortened, which seems outrageous, given that, as indicated above, the process is always painfully long due to all the ticks and crosses ATO/Centrelink request of us, and the fact we are disabled, meaning we are usually already struggling with limited capacity and money to function, let alone carry out administrative reporting and documentation for our conditions.
The same can be said about the proposed changes to eligibility compliance, more automation in the documentation and eligibility process, and the “not contactable”/participant engagement rules. Anyone who lives with or around disability is aware that flexibility is what we need most often, and trying to get our bodies to conform to a template or certain timeline is often impossible. That disabled bodies do not fit a checklist or conform to the timeline you set should not foreclose their access to support - indeed, it is that our disabled bodies do not fit in normative society that we find ourselves in this position in the first place. An accessible society would allow us to live in a fuller way, enabling us to participate in society in a way we are consistently pressured to live but ironically unable to live because of lack of accommodations and scaffolding.
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Submission 2736
In my experience dealing with ATO and Centrelink for DSP and super release, I have frequently missed phone calls or deadlines for submissions on things, simply because I have been so sick I could not answer my phone - I was so sick I wasn’t even aware I had a phone! Messages are rarely left and so I have been none the wiser, only finding out “too late” that a follow up was made. Since I missed said follow-up, I have been told to begin the process again from scratch. The same can be said for the lack of human engagement with my applications. I have submitted two very detailed and extensive applications for super but it is as if whomever is reviewing them reads them as a machine, rather than as a person with critical thinking and literacy skills, so if the submission does not look exactly how it ought to, it is denied, even though the correct information is in fact there. There is rarely anybody to speak with about these things, and when decisions are made they tend to be done so in a matter of fact, cold way, with little feeling of empathy.
Indeed, I was put on suicide watch for several days after my first super release application was rejected. The person delivering the news was so black and white about it that I felt like I had somehow failed at not just the application process, but life; like I was doing something wrong and being punished for it, simply for being sick. They didn’t seem to understand that what they were telling me was deeply distressing for me, and as I’ve alluded to above, felt like a matter of life or death. I felt like I had been cornered and there was nowhere to go. Suffering through severe sickness already with no sense of being able to get financial assistance for not only treatment but rent or bills, made me feel like there was little other option but suicide. It took a long time and pro bono therapy work to pull me out of suicidal intention and/or ideation.
With all this in mind, I genuinely believe these changes to the NDIS will cause an increase in suicide amongst disabled Australians, and I hope the government is prepared to shoulder that.
Finally, I am deeply concerned about the loss of supports for many people already on the NDIS. I have many disabled friends and colleagues who rely on these supports to live with some element of dignity; without those supports they will undoubtedly lose that dignity, and I know their health and wellbeing will decline. Those supports are frequently the difference between feeling life is still worth living and feeling that it is not; it is deeply unjust that a government would take that difference away.
This really is life or death for people and I am not sure the people behind these changes understand that. Or if they do, they are operating from an ableist mindset steeped in eugenics.
This final point is made without mention of my own potential to get supports in the future. Suddenly, it seems impossible that I will get onto the NDIS, let alone receive additional supports that would help me get back to participating in the world again.
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Submission 2736
There is a great deal more I could add, but as usual, my capacity is limited, and writing this alone has taken its toll on me.
I trust the committee will take on board my feedback as a disabled person, and that of the many disabled people and their allies who are submitting, as well as those who - because of incapacitation - cannot submit.
One need only look at the public discourse coming from disabled people and those who support them to see how desperately we are against this.
Disabled people deserve so much more, especially from a Labor government, which I never would have expected to make a move like this. I urge you to reconsider this inhumane Bill.
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