National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2163
Submission re: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
If I didn’t have NDIS I would have to die. I can’t work and the DSP doesn’t pay well. I couldn’t afford counselling. I couldn’t afford a cleaner, and I couldn’t afford the guy who mows my grass. I can’t do these things for myself. If I could, I would do them, but I can’t. I’m in pain every single day and it’s only going to get worse as I get older. NDIS also gives me a Support Coordinator who helps me with paperwork and communication and an OT who can explain to other people why I can’t do things for myself. My mother is my main support. She’s 71. I’m so scared of what will happen to me if she dies before I do. I’d probably have to get support workers but with cuts to the NDIS, I’m not sure if that will be an option anymore. My other support was my ex-husband but he’s left. He was angry that I told people what he did to me. I threatened to tell the Quality & Safeguards Commission that he wasn’t giving me food or water while I was bed ridden after I ruptured a disc in my back. After I told him that, he started giving me food and water. It was the counselling I got through NDIS that pointed out the abuse and helped me to survive him before he left. I’m going to lose my home in the divorce. I’m hoping there’s something in the wider NDIS system where I can find housing because I can’t afford housing, even with having my mum as a roommate. I’m almost certain I’m going to end up homeless. The council here has breached human rights of the homeless people in the area; a verdict which was handed down by the Supreme Court. I’ve lived in this area most of my life. Surrounding council areas are also unfriendly to homeless people. Becoming homeless while managing several disabilities and where I’ll be targeted by the community and the council is terrifying. I doubt I’ll last long enough to get public housing. The waiting lists are huge. When I was trying to escape DV, I asked the few friends I had if they could let me stay with them. All of them said no because they “like their space”. I even tried to trade sex for housing. I don’t have those friends anymore because one of them punched me in the neck. I don’t have any friends now. A lot of social programs were taken away last time the rules changed. I don’t go anywhere to socialise anymore. I don’t meet people. I stay home with my mother and I only go out to go to medical appointments or to go shopping but it’s for necessities like groceries. I’m in too much pain to go out for much more than that. Before the rules changed, I was going to a woodworking group. I learned so much and was getting some confidence back but the funding rules changed and I couldn’t go back. My mental and physical health is deteriorating because of the isolation and stress.
Being disabled is horrible and life is really hard. It would be much worse without the NDIS. I couldn’t survive. I’ve been reading about the proposed NDIS changes and watching videos from people who read the legislation. I’m scared. I know I’ve got a disability and I know it means I can’t be “normal”. I never was and never will be. I’m scared I’ll be removed from the NDIS all together even though I know I need it and can’t live without it. I’m scared that even if I’m not kicked off, I’ll have my funding slashed which will basically do the same thing. I’m scared for other disabled people too. Our struggles have been trivialised and we’ve had the community turned against us. I’ve had people look down on me for being an NDIS participant and it’s getting worse. I’m scared about how much pressure this will put on my mum. She already does so much and she’s struggling. She can’t do this forever and she won’t live forever. Then what happens? She’s my physical and emotional support and my advocate.
The proposed changes look at the primary disability only and ignore secondary disabilities but I have more disabilities since starting with the NDIS. The new changes won’t reflect those, I’ll lose essential supports and be in even more pain than I currently am. My current supports keep my disabilities relatively stable and significantly slow my decline. Right now, I can walk most of the time. Without my supports, I’m going to be left with no option but to be in a wheelchair and I’ll have to fight the medical system to get help which they’ve so far refused because I can’t afford it and public medical care won’t intervene at this stage because the risk of further disability is too high. There’s some days where I’m actually accomplishing things I couldn’t do before. Minor things, like learning new cooking skills. Without the current supports, I won’t have those moments and I’ll need more expensive complex supports. I’ve also heard that autism is being
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2163
targeted as a condition that isn’t significant and/or isn’t permanent. I don’t understand how. Autism is in your brain and your brain controls your whole body. The statistic for autistics are pretty grim. The unemployment rate is higher than regular people, the risk of abuse is higher, the life expectancy is lower, and it comes with a whole bunch of comorbidities that impact your physical body and mental health. When I was a kid, autism “didn’t exist”, especially in girls. Except it did. People turned on you because you were different. I’ve been assaulted so many times just for looking different which is strange for a condition that is considered “invisible” but people know you’re different and you’re treated badly as a result. The first time I took medication for ADHD I was horrified and angry because I realised how easy it was for people who didn’t have ADHD. Counsellors always talked about deep breathing exercises and self-talk for anxiety and told me I was lazy and difficult when I said those strategies didn’t work. Except, when I take ADHD medication, those strategies suddenly work. There’s no medication that will do that for autism. Nobody sees the struggle that we go through every day with this disability. Now we’re being told that it isn’t a “real” disability; that it isn’t significant or permanent. That’s such an outrageous lie. If a regular person was to swap bodies with an autistic person for a day, they’d be horrified. But we’re stuck in these bodies 24/7. We NEED help.