National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 136
Submission to the Australian Government’s NDIS Inquiry
My name is and I have a 9-year-old son. My son has been on the NDIS since 2022, originally under the category of a general developmental delay, with him later receiving a primary diagnosis of autism. I want to make it clear that he has other disabilities/diagnosis which compound and complicate his support needs, such as ADHD-C, PTSD, generalised anxiety disorder, sensory processing disorder and a pathological demand avoidance (PDA) profile to his autism. He, like every other participant on the NDIS, does not neatly fit within a tick box form.
My son’s NDIS funding allows us to access the intensive therapies that he needs to survive in the world, such as psychology, occupational therapy, behaviour support specialist, physiotherapy and, previously, speech therapy. They are vital in building his capacity as a child into adulthood. Over the years, we have had times of extreme behaviours, distress and burnout where he has not been able to leave his bedroom, let alone the house to go to school, see family and friends, or participate in the community. Without having his support team working with our family and supporting us to advocate for his needs, we would never have managed to come out the other side.
My son’s NDIS funding allows him to attend a social group with other autistic children on a Saturday during term, to make friends and build skills. It allows me to buy the pull ups in his size that we require nightly as he is still night incontinent.
I do not work because of my son’s support needs and the need to be immediately available to him. My husband works long hours to provide for our family. But simply put, without his NDIS funds we would not be financially able to support his needs to give him both the support he needs now and to give him the best chance at life.
The proposed changes to the NDIS act appear vague and lacking a clear plan for the future. The process itself is being rushed through without the correct checks and balances to ensure that things are not missed, and the community that this will dramatically effect are consulted. In my opinion, as it stands: • The bill the government is trying to pass appears to be a blank check with details TBA in the future; • The states and territories have publicly stated they do not have the capacity or financials to provide supports for people who are removed from the NDIS; • State based supports that we are supposed to rely on instead of NDIS simply do not exist; • Nobody really knows what or how Thriving Kids is going to work, besides the fact that it appears to limit supports to autistic children and push a behaviourist agenda. • The rhetoric from the government and the current media campaigns are targeting autistic children and adults, as if we are somehow rorting the system.
This leaves families like mine, who rely on the NDIS, in limbo- where we are both fearful for the future and the subject of a smear campaign. Having a hidden disability makes it easier for you to paint us as not really needing support, but just because you
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 136
can’t see a disability does not mean it isn’t there with real impacts and consequences for the person and their loved ones.
Another thing I struggle with, is the repeated line that the NDIS is for “permanent disability” as a way to move autistics off the scheme. Autism by definition is a permanent, life-long disability and not something you grow out of. Yes, your support needs fluctuate, but your diagnosis doesn’t. I am aware that the proposed bill changes the NDIA definition of permanence in relation to disability, meaning that one must exhaust all available treatments before accessing the NDIS. People with disabilities and their families, many of whom have to give up work to take on carer roles, do not have the disposable income to try every treatment, especially when one lives in rural or regional areas where treatments are often not even available. This change disproportionally disadvantages an already vulnerable group.
Society and government’s role is to support and protect its must vulnerable. To ensure that collective wealth is distributed to meet the needs of the people. Having a disability does not take away one’s basic human rights. Disability is not something that negates the value of someone’s life or puts them in a position of pity or inspiration for the general population. Spending money on the NDIS to support people with disabilities isn’t a waste of government spending that needs to be reduced. In fact, economic modelling shows that for every dollar spent on the NDIS, the Australian economy receives a $2.25 boost. It creates thousands of jobs.
As a late diagnosed autistic mother of an autistic son, I am scared for what the future holds and the way the proposed changes to the NDIS will affect the disabled community and negatively affect future policy and community sentiment. So, I leave you with one of many anecdotes I could share about the struggles of having a hidden disability in a society that preaches inclusion and diversity, but when the surface is scratched is ignorant and judgemental.
When my son was 7 years old, we attended an initial appointment with a local paediatrician. My son and I sat in the room while the paediatrician who asked the standard questions. Now my son at this time already had his autism diagnosis etc and we shared the list. The paediatrician then asked, “Do you and your husband have any disabilities or major health concerns.” I replied, “Yes. My husband has ADHD and dyslexia and I have recently been diagnosed as autistic too”. The paediatrician looked me dead in the eyes and said, “Well what did you expect, having a child with that genetic baggage.” A paediatrician who worked with autistic children every day, told me this in front of my son. The message was clear- You are less than because of your disability.
My son is not less. I am not less. We are different and we are disabled. Our lives matter and decisions about us and our community, should not be made without our voices front and centre.
Thank you.
Yours Sincerelty,