Submission 261
Dear Chair and Committee Members,
I wanted to make a submission about the new bill which will amend the NDIS because receiving my first NDIS plan in changed my life.
At the time, I was a young person who had to move back into my childhood home because I could no longer live independently, whose career prospects had vanished out of thin air, whose left out of fear of becoming my carer, and whose hopes of ever having a future felt so far away because of being diagnosed with an incurable and progressive condition. Becoming an NDIS participant gave me access to the essential supports I needed to figure out what my life can look like now — whether I can still have any of those things I dreamed of (things that most people take for granted, like a family, or a career, or a home of their own) and how I could have them, even if it looks a little different than I imagined. My first plan wasn’t perfect, neither isn’t my current one, and I’ve had to fight every step of the way, but I’m grateful for what it has given me.
I am terrified. There is a documented track record of how changes like these have harmed and killed people like me. I agree that things need to change, and that the NDIS is at risk of being sustainable, but I do not understand why the people I look to to represent me have chosen to contradict everything the NDIS is supposed to stand for, instead of implementing the recommendations from the Royal Commission or listening to the community.
It does not seem like the NDIS was managed properly from the start, that it was underfunded and underestimated, and that no one expected we would have a national health crisis like the pandemic. I am sure no one expected that our health system would become overburdened, that Medicare would not keep up with changing costs, and that professionals would have to leave public services and into the private sector just to pay their bills. I did not expect I’d become disabled, I was not born disabled, but it was the lack of access to supports and waiting times that meant my condition became a disability. I feel I was robbed of my chance at a life, and now I will be punished for it
My current plan does not meet the expert recommendations in my NDIS-funded Functional Capacity Assessment, but I have made do with the supports I have been
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given because I hope that, by continuing to show that I use the scheme the way I am meant to and that I am considered a success story by my team, that I will eventually no longer have to fight for my needs to be recognised and funded. The changes in the bill make me feel like it was all for nothing. I am grateful for the NDIS because it has given my elderly carers some dignity in their age. My is working far past retirement age because the cost of living has made supporting me and my harder to do on one working income. I am grateful because my health team means a lot to me; they have helped me and supported me through things I didn’t think I would survive. I am grateful because my funding has given me access to supports that help me build on the independence I lost, and prevent my condition’s progression from taking more of it. It has not been easy. It has been a lot of hard work and tears to get to this point, and I feel a lot of grief watching my loved ones continue with their normal lives without me because of things still out of my control. But I am grateful, because I get to still be here. That I am Australian, and have access to these supports. That the generation of people before me who I have met with my condition have something to be proud of — that I am not suffering the way they had to without any support or quality treatment. This should feel like it will all be worth it.
If I were to lose any funding or support, like the ones suggested in the changes, I fear that my life will become impossible and I will regress. I use my social and community funding to go to my appointments, to go to the gym with the supports I need so I don’t hurt myself, to go to my place of worship to learn and connect with community, and to go to activities that empower me to keep growing and enjoying my life. I use my funding intentionally and even if I had the funding to spare for recreation, because I don’t, using my funding for a support worker to come with me to things I would not be able to do without them is not a lifestyle bonus. I am not a scammer or a crook, and neither are the people I have connected with who have been experiencing cuts, unfair treatment by the NDIS, and waiting times that have compromised their health — for years now. I do not think these changes will be the start of a new era of our scheme that will get it back on track. I think they will be the next steep turn in a decline that will kill Australians like me.
I agree that fraud should be addressed in the NDIS. But these are the changes in the bill that I do not believe will address it, and that I believe will harm participants like me:
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● The bill doesn’t say what having “functional capacity” means. The rules will be written after the bill passes, and Parliament won’t have a say. I won’t have a say about how a vague definition of my medical reality will be used against me. ● My other conditions won’t be considered alongside the one that got me approved. I have had a secondary condition removed without notice, and have had to put back in. How can I trust that what impacts me won’t be removed to lower the cost of supporting me? I also don’t understand how supports tied to one part of me can be cut when my medical reality and my lived reality are one. I have a condition that is progressive, that has progressed because of red tape in healthcare, I am allowed to be afraid of this. ● The Minister will be able to cut whole categories of support without needing a new law. These are not lifestyle supports for me, they help me access the other supports funded, my community, and the things that keep me well. I do not see how a community program will fill the gaps. ● “Reasonable and necessary” test will now include “scheme sustainability.” I know this means the NDIA will be allowed to refuse supports because of cost, not because of need. The whole point of “reasonable and necessary” was that need came first for once. I don’t understand how the same words can be made to mean something so different, just because the government is uncomfortable with the cost they have set and lost control of. ● To get on the NDIS, the bill says people will now need to have tried “all appropriate treatment.” I don’t know what that will mean. What I know is that people have the right to refuse treatment that hurts them, that doesn’t work for them, that they cannot afford, or that isn’t available where they live. It is a human right. Who decides what is “appropriate”? Or what “exhausted” means? ● The NDIA will be able to gather and share my information for criminal investigations. The bill doesn’t say they need a warrant. It doesn’t say they have to tell me. It doesn’t say my medical, legal, or therapy records are off limits. I am not a criminal but I do know protections like this matter for everyone.
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● If I lose a receipt or report, the bill says I will owe the NDIA money — even without anyone finding that I did anything wrong. This is a lot like Robodebt which led to suicides that could have been prevented. ● Decisions about my plan can be made by a computer. The bill doesn’t say a person has to check. It doesn’t say I have a right to ask how the computer decided. After Robodebt, I don’t understand how this is even being suggested. It does not feel efficient or like it will save money when more people have to go to tribunal to fix human-made and computer-made mistakes.
These are the recommendations I have found from the Disability Royal Commission (Final Report, September 2023) and the Independent Review of the NDIS (Bonyhady & Robertson, December 2023) that have not been implemented yet, and do not appear to be considered in this bill, but which could fix the issues the government says it wants to fix:
● Any reforms being designed with the disability community, not delivered to it. This bill is not described as co-designed, and the language of co-design does not appear in it. It seems money has been spent on consultations just to look like this is being done currently. ● Building a tier of community-based supports outside the Scheme, so the NDIS isn’t carrying the weight of an underfunded health, mental health, housing, and disability services system. Without this first, tightening NDIS access just leaves people with nothing, which will put more burden back into systems, and lead to deaths. ● Properly funding independent advocacy so disabled people can navigate and challenge the system when it doesn’t work for them because no system is perfect. This bill expands NDIA powers without strengthening ways to keep them accountable. The NDIA already spends too much money on legal teams and mistakes they make, the ART statistics are concerning, and the worst hasn’t started. ● Neglect-related deaths in NDIS-funded settings were found. The bill introduces surveillance of participants, not stronger safeguards to protect them. Removing access to the system and environments instead of fixing them is counterintuitive.
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● Addressing the workforce crisis and the markets that make services unavailable in regional areas. Instead of understanding differences between regions, one size fits all has just made this worse. ● Improved access for First Nations, CALD, and regional participants. Intersectionality barriers matter.
Another concern I have is how the changes go against the NDIS Act itself and the UN Convention on the Rights of Persons with Disabilities. The NDIS Act 2013 says that one of the Scheme’s objects is to “give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities.” I don’t understand how something supposed to fix the NDIS can also go against and contradict what it is built on.
These are the articles the bill contradicts to what I understand:
● Article 12 — Equal recognition before the law. Automated decisions and silent revocation strip away legal capacity through administrative process. ● Article 17 — Integrity of the person. Requiring “all appropriate treatment” before access risks forcing treatment on disabled people against their will. ● Article 19 — Living independently and being included in the community. Defunding community, social and capacity-building supports removes the conditions that make independent living possible. ● Article 22 — Privacy. Expanded information-gathering and data-sharing powers, without warrants or notification, breach the right to privacy. ● Article 25 — Health without coercion. The coercive treatment clause directly contradicts the right to health on the basis of free and informed consent. ● Article 28 — Adequate standard of living and social protection. Silent revocation after 90 days, use-it-or-lose-it clawbacks, and tightened access remove the social protection the NDIS was designed to provide.
These are other legal frameworks I believe the bill does not acknowledge or could breach:
● Disability Discrimination Act 1992 (Cth), s 6. The requirements the bill imposes — records, claim deadlines, contactability, treatment exhaustion —
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are requirements that disabled people are, by definition, less able to meet. This is indirect discrimination. ● Privacy Act 1988 (Cth), Australian Privacy Principle 6 (Schedule 1). Information collected for NDIS planning purposes can now be used for criminal investigations and shared with other agencies, without participant notification or warrants. ● Administrative Decisions (Judicial Review) Act 1977 (Cth), s 5(1). Automated decisions without specified human review, and revocations following silence rather than findings, raise serious procedural fairness concerns. These are the same concerns that brought down Robodebt. ● NDIS Act 2013 (Cth), s 3(1)(a). The bill contradicts the founding objects of the very Act it amends. ● The Royal Commission into the Robodebt Scheme (Final Report, 2023). The recommendations on automated decision-making in the public service were accepted by government. The bill does not appear to comply with them.
I don’t think my concerns, or the concerns of the community, are being heard and believed. I don’t think the changes reflect the co-design promise. I think we have more than enough reason to say that we will be harmed by these changes. I know you are all under a lot of pressure to find a solution, but I hope we can find a better one in the suggestions that already exist.
I am asking for support amendments to this bill that:
● Remove the coercive treatment requirement (Schedule 1, Part 8) ● Require human review of any automated decision affecting a participant’s plan ● Prevent plan revocation through administrative non-response ● Require independent oversight before any expansion of NDIA information-gathering powers ● Preserve the principle that “reasonable and necessary” is a needs-based test, not a budgetary one
I am also asking you to support implementation of the outstanding recommendations from the Disability Royal Commission and the NDIS Review before further changes that could harm participants are introduced and acted on.
Submission 261
This needs to be fixed and the community needs to be able to trust those representing us like you do.
Thank you for everything you do and for listening to me.
Kind regards,