National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2852
Monday, 1 June 2026
NDIS bill - request to be withdrawn About me I am 39, a childhood cancer survivor and live with multiple disabilities and medical conditions that all interact with each other. I have met NDIS access for hypermobile EDS, autism level two, PTSD, sensory processing issues, and POTS. Most things in life are challenging for me in one way or another - I am typing this up speech to text by the way, using my iPhone which was funded by NDIS for this reason because Siri is the only speech to text that even remotely understands me when I talk - and I have nowhere near the quality of life or freedoms of most people my age. All of these disabilities have been part of who I am as a human For my entire life because the PTSDis complex caused by intergenerational and subsequent trauma. I grew up before NDIS existed. I also grew up in rural areas. My parents were undiagnosed but very obviously Neurodivergent with the same disabilities as I have. I say were because they are both dead. They both died six years ago not from Covid but from sepsis related to the coping mechanisms that each of them used to cope with the intergenerational trauma and constant hypervigilance and trauma that comes with living as a Neurodivergent person in Neurotypical society. I have lost multiple friends who lived with disabilities who did not have access to NDIS. I tried to tell people that life was difficult for me and I was even suicidal as a child because of what I now know were from my disabilities. I was bullied all through school because I was different and couldn’t communicate properly with other people, despite getting good grades in school I was never able to organise myself to be able to be on time or do assessment in a way that met deadlines.I was misdiagnosed for years and it took me being constantly in high levels of pain, having a torn labrum in my shoulder, What the NDIS means to me It was incredibly difficult for me to gain access to NDIS in the beginning and it already took multiple reviews. I’m really bad at paperwork because there is so much trauma associated with it and I always have to push way beyond my capacity to be able to have people understand me because I am so far away from anybody’s understanding of what a human experiences and I’m still going. Mainly because I spent years constantly in fight/flight hypervigilance. I rely on support workers on a daily basis to ensure that I am safe in the shower because I frequently slip or fall over and enter myself due to the hyper mobile EDS I also have a lot of trouble with executive functioning and fatigue. So if I go to have a shower I will forget my clothes or I will forget to bring my phone into the bathroom and then if I have to go get them with wet feet I am at high risk of falling. I need a lot of help with just basic carrying and emotion regulation support. Things like transport because my disabilities mean that I have not been able to learn how to drive no matter how hard I have tried. Some days I can’t move through crowded areas. Sometimes they
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2852
need support to get people to move away from one side of me so that they don’t bump into me because if they bump into me I will fall over. I also shut down and experience times when I can’t talk and can’t move because of being autistic. I speak in scripts because of this too and people often don’t understand what I’m saying. The NDIS has given me an opportunity to spend time around people like myself with the social and community participation. It has given me the opportunity to find casual work and build my portfolio as a professional artist-when I only have the ability to work two or three hours a week. There is no other Support service that would be able to assist me like this. Through NDIS I have access to physio weekly which helps me maintain my muscle coordination which is vital form my continuing to get out in the community I have access to OT and social workers who help me with things like AT for when I can’t walk - my wheelie walker, bed to help me sit up - in researching housing options whether there is no alternative in the community I’ve been on a public housing waitlist for years now and I’ve had several bouts of homelessness because I’m not able to walk up stairs. So most houses in Brisbane that are affordable on a disability support pension are not single level. Being autistic level two I’m more likely to be taken advantage of by flatmates as well without realising so it’s very difficult for me to find flatmates. Access to social workers and even my physios has helped me through this and has helped me maintain a formal support network Without my art I am hallucinating constantly. I was constantly calling NDIS, who were then calling an ambulance, who stepped through the triage process at hospital with me found out that I was not able to be admitted for mental health reasons because I hadn’t attempted suicide that day, and would either take me to hospital keep me there for a few hours and send me home, or just turn up and not take me. I don’t want to think of what this world would be like for me without my NDIS supports. I will probably be dead like my friends and my parents. If this bill does go through, I would very much appreciate that you loosen the restrictions on voluntary assisted dying because many people require their support for basic parts of life like breathing. For me, not having access to Support work at adequate hoursmeans that I am trapped in my home with no ability to get up the driveway on most days. It also means that as I’m not able to prepare my own meals (I currently have meals delivered) I would probably be going hungry most of the time. I don’t have an informal support network because my parents are dead mainly because their generation did not have access to a support like NDIS Institutions have not been around during my lifetime and I have struggled with the health system and a lack of diagnosis and lack of support - until I was accepted onto NDIS. I will also struggle with any reviews because of my limited capacity. Even my formal support network is not substantial or well connected it relies on me to manage it
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2852
Please don’t let this go through. Otherwise you can add me to the list of people who will probably be dead from it.