Disability Insurance Scheme Amendment (Securing

the NDIS for Future Generations) Bill 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs Submitted by email: community.affairs.sen@aph.gov.au

Date: 1st June 2026

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a NDIS participant.

I want to outline the harm this Amendment Bill will cause if it passes Parliament. This Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny and amendment before it proceeds.

Senate Community Affairs Legislation Committee Inquiry

I would like to start by acknowledging the long-term viability of the NDIS as being of the utmost importance. It is paramount that the most vulnerable in our disability community are cared for.

If these changes are passed as is, it is likely I will be defunded. Once defunded I have no means to access food.

I have had ME/CFS since 2015 and been bedbound or housebound since November 2016. I often use a motorised wheelchair to mobilise in the house. I live alone in a village two hours away from the closest regional town.

My main concern with the proposed cost-saving changes to the NDIS is that they depart from the principles upon which the scheme was founded, which was supporting people with disabilities to achieve their goals using reasonable and necessary supports based on individual needs. It is my understanding that the NDIA will now be using AI to make participants’ plans based on disabilities, and there will be a list of excluded and included conditions that is not then negotiable on the individual circumstances of that person with a disability.

Take my situation. ME/CFS is widely and wildly misunderstood by not only the broader community, but by the medical profession and disability providers. Despite over 1000 peer- reviewed academic papers describing neuro-immunological changes on a cellular level, metabolic changes with severe consequences and post-exertional neuro-immune exhaustion, it is still considered to be a disease that predominantly “makes you a bit tired all the time”. This could not be further from the truth. ME/CFS is a permanent condition with no effective treatments that is often more disabling than MS and mimics the capacity of someone enduring their final weeks of life with AIDS or cancer, but there is no end in sight.

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I have not been able to walk more than 50 metres in nearly a decade, and even that is not something I can do all of the time or repeat multiple times a day. Every day of my life I spend lying down, unable to engage with sustained screen time or read because of the cognitive effort involved and the level of post-exertional neuroimmune exhaustion (PENE) this creates, which increases disability unquantifiably for an indeterminant amount of time. The thing about PENE is, you never know when the excruciating hypometabolic state is going to end, or even if it will end at all. At my worst I have spent three years in a darkened room, barely able to shift myself to use a commode. I would lie in bed for hours hungry, waiting for my support worker to arrive so that I could eat. I was lucky that I could eat – some people with ME can’t eat.

Your proposed AI model of one size fits all would no doubt inevitably deny me access to the NDIS based on the prevailing misconceptions around ME/CFS, but if it did grant continued access, it is likely to assume I’m “a little tired all the time” and largely capable of surviving alone, which is just not true. Without NDIS support I am unable to access groceries or attend medical appointments. I am unable to cook or maintain a home and regularly unable to shower.

I know there are a lot of NDIS participants out there who share my concerns because they too, have been affected severely by something science and society may or may not have fully caught up with yet. It scares me that the changes are going to enable the Minister to remove many chronic illnesses from the list, regardless of how disabling they are in practice.

The granting of broad Ministerial powers in the Bill before parliament grants the Minister the power to exclude classes of people from the NDIS at their discretion. I have outlined my own terror, but this power is going to have trickle down effects to unpaid, informal supports, particularly in remote and rural communities, particularly disadvantaging Aboriginal and Torres Strait Islander Peoples, women, and families with little to no economic resources of their own.

The broad search and seizure powers and criminal convictions for misuse of funds based on the words of disabled people is traumatising, to say the least. I am lucky in that I have been able to pursue a legal education before I became disabled. I am now, however, so significantly cognitively impaired, that I am easily influenced to agree with statements that are inaccurate. I have been pushed into two very sticky insurance situations where I was legally entitled to compensation because of my impairment. I am not aware of any participants who are intentionally trying to rip off the scheme – I just have never heard of any such stories. I have, however, seen many a journalistic investigation into shell companies set up using participants’ NDIS numbers to charge exorbitant rates for cleaning or support work that was never provided.

My genuine fear is that, using conversations with disabled people that are had by frontline NDIS workers who have no legal training and require no formal education in disability will result in a Robodebt type situation, where erroneous decisions are made, plunging people who are already vulnerable into false debt. It will cause suicides; I have no doubt.

It also terrifies me that the proposed changes remove measures to appeal NDIS decisions. A corner stone of democracy is that individuals can seek review of administrative decisions. I have encountered so many people within the NDIS who are making decisions inconsistent

with the law because they have never been taught the fundamental principles of statutory interpretation. I have met NDIS staff who are not even able to distinguish between legislation and information obtained from a blog. Disabled opinions or knowledge are often discounted due to internal biases. There must be easy, transparent and open access to review of NDIS decisions or it will result in more isolation and abuse of people with disability. I have personally experienced decision-makers who were simply unable to apply the rules to my situation because they could not imagine being so incapacitated for so long, nor how socially isolated I am, or geographically remote. We need opportunities to review decisions when they put us in danger!

It is clear after reading this Bill that it is aimed at reducing access to the NDIS rather than tackling fraud-related offences. It will apply a one-size-fits-all assessment model instead of a whole person approach, will strip funding from entire classes of people and from entire classes of support where there are no alternative services to access, placing extreme burden on informal supports, and totally disregarding the fact that many of the most disabled people simply don’t have informal supports, due to their long-term inability to access the community.

The Bill strips safeguards and procedural fairness for the most vulnerable people in our community and I urge you to reject it on the basis that addressing provider fraud is going to be more cost-effective and save the lives of those this Bill would have slowly die than access taxpayer funding for their survival.

Yes, streamline the system. But streamline the bureaucracy, please, before you come for the participants who rely on this scheme to survive.

Yours truly,