National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1461
I write this submission as a tired, defeated and fearful mum of two autistic daughters aged three and five.
My eldest has been on the NDIS for the past six months, and these supports have been the lifeline we so desperately needed. We are seeing so many improvements from the targeted therapy supports we have been able to choose for our child. These have enabled her to start at a mainstream school and finally participate in some community recreational activities alongside her peers. Autistics are living in a world fundamentally not designed for them every time they leave the house. The NDIS supports my daughter receives are vital to her ability to exist and participate in this world. However there is still so much work to be done now and into the future, as her capacity can fluctuate and being autistic is a permanent part of her identity. I fear for her ability to learn, participate in school and reach her full potential if her NDIS supports are taken away. I fear for the future of my three-year-old who we have not even started the NDIS process for due to the deep uncertainty around what it will look like for kids like mine. Why should she get less ofa start than her sister? Why should any child who comes after the vast number of autistic children who have benefitedfrom NDIS supports get less opportunity than their predecessors?The proposed changes to the NDIS are designed around numbers and bottom lines and notaustralian’s genuine needs. This is a significant shift from the ndis’ initial purpose.Under thechanges, y my daughters would be not quite disabled enough for the ndis but no quite able t participate i mainstream education an activities without substantial support.These k will slip through th cracks High masking girls especially wh often do already.My daughe have s much potentia and so mch to give back socie They matter.Now address just four aspects othe propamendments bill time submit limited as is my capaci1.Increased expectation on parents: additional suppo burden wil disproportionately impact womenMy daughter’s NDIS therapy suport are only two hours week Outside that I am my
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1461 daughter’s mum, support worker, psychologist, OT and anything else an autistic child needs to regulate and exist in this world. Placing more support burden on families, is–lets face it–placing more support burden on women. I am a high-achieving, high school dux who made it to the top of her profession before having kids. I have aspirations of further study. I want to work and contribute. But given the needs of my eldest child, her fluctuating capacity to attend school and the care I also provide to my three-year-old around her kindergarten days, there are not enough hours in the day for me to participate in meaningful work in my field, let alone have a social life or restorative solo time. So how, given the current state of things, can I be expected to provide even more support?! Proposed (and current) push backs on what is parental responsibility is so deeply offensive to autistic parents of autistic children. I know that my eldest needs substantially more support than her peers. I see it when I’m still at school two hours after the bell rings, when every other parent dropped their kid off at the classroom door. I see it at the public pool, when parents are sitting fully clothed and scrolling on their phones while their child is in a class, while I’m in the water with my child who is unable to participate in classes. I see it at birthday parties, when she clings to me for the duration of the event and needs such intense support that I am unable to join the other parents who spend the party socialising while their kids run around and fend for themselves. Any parent will admit parenting is a tough gig; parenting a neurodivergent child is another level of tough. We do not need parenting education. We deeply understand our children and their needs. Most of us have lived experience of being autistic. We are parenting the way we wish we were parented. Our child’s autism and their struggles is not a fault of this parenting, and is not something that can be “fixed” by some online course or manual. We don’t need more education. What we need is hands-on and tailored support to alleviate some of the burden and provide respite, which in turn will help both us and our children to participate in and contribute to society.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1461
Families will lose their choice of care supports that work for their child
Through much trial and error and waitlists, we have built a strong neuroaffirming support team for our child, funded by the NDIS. It would not be financially possible for us to have these supports for our child without her funding. Prior to this, the mainstream system failed us. Multiple GPs and maternal child health nurses dismissed my concerns about autism delaying her access to support.It was only when I sought an independent diagnosis at great effort expense that she finally received proper attention.Other mainstream “supports” also failed us.A Department Education psychologist advised me ignore my daughter more frequently to shorten drop-offs but our own psychologist correctly identified school as unsafe space leading reluctance separate from primary caregiver tailored support led NDIS-funded psychologist.Taking main stream advice had detrimental impacts on daughters ability attend keep attending school therefore access learning.I am concerned what Thriving Kids offers children like mine in mainstream settings without tailor Neuro-affirming support she can receive under NDIS.The Exhaustion Test: availability affordability suitability Supports The proposed expectation exhaust all available options before applying accessing NDIS is unfeasible most families unjust.Our children are guinea pigs.We’ve been told early intervention crucial now proposing wait-and-see approach?And if even afford or able financial access supports Thankfully live metropolitan area where after waiting barrier many supports available But still unable finance them without NDIS.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1461
So while the taxpayer may benefit in the short term from excluding children like mine from the NDIS, the losers are our children. Our children are our country’s future (and future taxpayers). Autistic children have just as much to give as their peers. Ripping these funded individualised supports from under their feet and expecting parents to foot the bill gives our children far less opportunity and access to learn and succeed as their peers.
Permanence requirements are exclusionary for autistics
Autism is permanent. It is a neurodevelopmental part of our biology, as well as part of our identity. Despite tailored support, capacity to participate in society can fluctuate greatly day-to-day. The amendment shows a deep misunderstanding of autism and how it impacts daily life.The struggles may be hidden.They may be masked They may not present as visually-identifiable disability But it does not mean that they are not there.All therapy supports will make me or my daughters less autistic.But it is support, which means we need this chance at thriving world Please don’t take away.