National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1108
My name is . I am a 33 year old woman with Spinal Muscular Atrophy Type 3. Which is a progressive condition that causes muscle weakness over time. As a result, I’m unable to lift my arms above my own head and I have used a powered wheelchair full time since the age of 6. Without the NDIS, I would simply not have the will to live.
Firstly, the new NDIS bill has proposed that plans will be based on functional capacity assessments. The NDIA claims that this will be based on “a consistent, objective and evidence-based assessment of functional capacity”. This change concerns me as I am currently receiving a very expensive medical treatment for my condition. This treatment has allowed me to improve my functional capacity, as long as I keep receiving the treatment and have access to the same amount of care and physio funding that I have now. My concern is that in the future, someone, or worse, an AI program who doesn’t know me, doesn’t understand my medical condition, will deem me as being less disabled than I am, because they have seen me on a day where I am not in pain, or not sick. The nature of my disability is made worse when I am sick. I have zero muscle mass and I have the lung capacity of 43%. When I get a simple cold, I am sick for weeks on end. It takes me weeks of physio to regain my strength after an episode of illness. Without my wheelchair, I am essentially a giant baby. I need to be transferred from my bed to my wheelchair with a hoist . I need to be hoisted to and from my commode to use the toilet. I have never been able to wipe myself after using the toilet. I require all meals to be made for me, as I lack the muscle mass to use kitchen equipment. I cannot dress or shower myself. A 3 hour meeting with a stranger would not show all of this and frankly, I don’t want to have to be made to perform tasks in front of a stranger to assess how disabled I am when my diagnosis already does that. That is the whole reason for medical diagnosis’, so that people don’t have to prove how disabled they are and retain some form of dignity. Reducing people to their functional capacity and not their diagnosis will harm disabled people. Demanding a “performance” from marginalised and vulnerable people is perverse and will not accomplish what this bill proposes to accurately or effectively.
Secondly, the new bill proposes changes to limit unscheduled plan reviews. These changes mean that disabled people would only be able to request a new plan if their functional capacity has changed or “there has been an unanticipated, significant and ongoing change in a participant’s living, education, work or informal support arrangements.” These changes take away participants ability to request a new plan if the plan manager has made significant errors when funding participants. If these same rules were in place during 2025, I would have ended my life. In 2025, the NDIA gave me a new plan. This plan reduced my care hours from 9.5 hours to 7.5 hours. They cut my community access funding from 10 hours a week, to 2 hours a week (no weekend). They also cut my SDA funding from $100,000+ to $50,000. The NDIA made these decisions because I did not have a new functional capacity assessment completed in time for my plan review (which was only a two week turnaround) and the one from 5 years prior was apparently not sufficient enough despite my condition being progressive. They made these decisions based on the fact that I live alone, in an SDA apartment, with no informal supports. Cutting 2.5 hours of my daily care is asking me to go to the toilet less times in the day. I already go to the toilet only 4 times a day, I shouldn’t have
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1108
to reduce this more. Having my community access funding cut to 2 hours a week was a slap in the face as an Australian citizen. I am unable to leave the house without my carers help, and to be given less time to access the outside than a prisoner in our gaol system was dehumanising and frankly, outrageous.
Thirdly, the bill proposes that the Minister for the NDIS can have the ability to reduce funding from participants existing plans. Specifically cutting social and community budgets. After sending a complaint to Mark Butler’s office telling him how little community access I received. I would hate to have that reduced down to another dehumanising amount where it will make going to doctors appointments and accessing the community difficult. I deserve to be able to leave the home for other things besides going to hospital and the doctor. I’m an artist and I love going to art galleries and seeing live shows. I do not get to go often.
Fourthly, the NDIA being allowed to suspend NDIS participants plans if they cannot get in contact with participants will deeply impact my mental health, and therefore my physical health. What am I meant to do if the NDIA calls the first time and I’m in a doctor’s appointment? Then the next time they call, and I am having a shower? The third time they call and I’m having a bad day and I don’t want to speak to anyone?
My daily schedule looks like the following; Every morning I wake up, and I can’t be contacted from 8am to 12pm. During those hours I am doing my personal care and then I am doing my daily meditation and physio. No one can get in contact with me during those hours and this is by design. I need to be able to relax enough to stretch my body so that I can move my body and hopefully improve my quality of life. I can’t do this if I’m worried that the NDIA are going to call me whenever they feel like it. How many times will the NDIA contact us before they cut us off? The same people that the NDIA claims to want the NDIS to be for, will be the ones who suffer under this ridiculous proposal.
Finally, the proposal to allow the use of AI for administrative functions such as processing claims and payments is a dangerous step to take. It feels like a slippery slope into allowing AI to gradually start making decisions for participants plans and that is not a safe option. AI models are built off of human data and humans are inherently biased into thinking that what they think, is correct. It’s only through meeting people like me, and your perspective changes. AI should not be anywhere near data that is related to real humans. Considering that the NDIS was created for humans, I find this proposal quite problematic. No matter how much information you feed an AI program, it will always lack the emotional intelligence of a real person. I am a real person. I and the thousands of other NDIS participants who these changes will impact, deserve to be treated like we’re real people. Not numbers.