National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1159
24th May, 2026 Submitted to: Senate Community Affairs Legislation Committee. Submitted by: Stacey Mother and Advocate For the Love of My Boys – Profoundly Autistic, Profoundly Loved
RE: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Dear Committee Members,
I am writing to you to provide feedback on the legislation proposed in the above Bill.
Who am I?
I’m Stacey. I am a mother to two boys, T (9-years-old) and L (7-years-old). T is profoundly Autistic and severely disabled, while L is not.
I am university educated in nursing and psychology, as well as holding multiple qualifications in the community services sector. I have experience working in the medical, mental health, and community in-home-care sectors.
I have spent over six years navigating the complexity of the NDIS system on my son’s behalf, in order to ensure that his severe, complex and dynamic needs were being met and our family was safe.
I am now one of only a handful of parents who share parental responsibility with the Department of Communities and Justice purely as a result of the severity of my son’s disability.
As T ’s mother, I remain consistently involved in his everyday life. I provide for him and I support him, and, above all, I advocate for him and others like him. Why am I writing this submission?
Because we cannot fail some of the most vulnerable people in our society, the way these changes propose.
Because if I don’t, then I am guilty by omission for every life lost to the changes.
Because we are already losing disabled children and adults to unnecessary deaths every day, and to allow that to continue – or worsen – is something I refuse to be a party to.
Did you know that non-verbal and intellectually disabled children and adults experience a drastically reduced life expectancy, which sits at approx. 39.5 years old? Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period Or that they have an injury mortality rate of more than 40 times that of their same-aged peers? Injury Mortality in Individuals with Autism. These are likely attributed in some part to the risk of eloping, which has been found to be 26.7% in Autistic children in the previous year and up to 34% of Autistic adults (Child Mind Institute). And that when it comes to drowning, Autistic children have roughly 160% times the chance of dying compared to neurotypical children? Autism Awareness Australia.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1159
My son, T , is the face I see in the statistics above. He is the subject, the risk, the concern that they talk about. And these risks will only increase should the proposed changes go through as they are.
T is profoundly Autistic, non-verbal, intellectually disabled, and has multiple other co-occurring significant disabilities that result in him being severely disabled and unable to speak or advocate for himself.
T is also a brother, a grandson, a friend, a student, and most of all, a mischievous, adorable child with a future – if he is cared for, protected, supported, and valued the same way non-disabled children are.
As a result, I have supported him and advocated for him every day of his life, and these changes will result in a direct deterioration of not only his quality of life now but also of his quality of life in the future.
T is not alone.
There are many children and adults like T in Australia, in New South Wales, in your community, in your social circle, and, in some cases, in your family. What am I concerned about? I hold significant concerns about the changes proposed to the National Disability Insurance Scheme (NDIS), in particular:
- Insufficient time to consult with the disability community.
I am very concerned that the short amount of time available for the disability community to provide submissions is both ableist and obstructive. I am not disabled, but I am chronically ill, and putting together this submission required the sacrifice of time, energy, and resources that I had very little ability to give.
Creating a consultation period wherein the very people it impacts the most are unable to participate fully is cruel and discriminatory at its best and un-Australian and a violation of disability rights at its worst. 2. Ineffective consultation with the disability community, their providers and their existing supports.
I believe that the NDIS requires reform and change in order to be sustainable and effective, and I support reform and change taking place. However, I believe that it needs to be done with meaningful engagement and consultation with those involved with the NDIS, from the ground level up.
It is impossible to create meaningful change and reform if those being consulted have only experienced disability in its conceptual state and not through lived experience. 3. Proposed introduction of Section 34(A).
A foundational concept of the NDIS has been that it provides supports that are reasonable and necessary to meet an individual’s disability needs. Allowing the Minister to have the ability to choose to reduce the funding for specified groups of support, even in cases where it has been assessed and determined to be reasonable and necessary, would undermine the very intention of the NDIS and place the lives of those who rely on it, and their Carers, in danger. At present, intended cuts to Community Access Supports and In-home Supports have already been proposed, and I have addressed
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1159
why this sweeping, generalised removal of funding without consideration of disability, severity and circumstances is terrifying for my son, T , and our family. a. Proposed removal of 50% of Community Access Supports.
Community Access Supports are not an optional support for many disabled people, but especially for profoundly Autistic and severely disabled people, such as my son, T .
Any rote reduction of this funding will result in a severe deterioration of their quality of life. Imagine being 9-years-old and not being able to go outside of your home because your disability requires 2:1 support to keep you and the community safe? Just this weekend, L and I had a community visit with T - we went at 9am to a usually quiet play place that we’ve gone to a couple of times this year. T played beautifully with L - and just as importantly, with other children - and had a fantastic time. It was one of those moments that wouldn’t have been possible without the therapy and support he receives from the NDIS.
And yet here we were, safely experiencing time in the community together, and creating memories that other families, without disabled children, have been making for years by this time in their child’s life.
Except it was only possible because T had two Support Workers familiar with his needs, gestures, tolerance and abilities. However, even then there were challenges. In a split second, T made a small gesture - a flick of his hand, that turned down in a way that meant one thing - “I’m done.” The gesture was a pre-cursor to him becoming overwhelmed enough to lash out at someone, and sometimes that someone is another child.
Because that happens, to be clear. One goal we have for T is to recognise and communicate when he is overwhelmed before he tries to hit or kick another child. Only with T , as with any other cognitively 2-year-old child, it can happen in an instant.
Without hesitation, we offered the word “Home” and at that word, T turned back and was ready to leave.
Of course, it still wasn’t enough. As he was getting his shoes put on by one Support Worker, T grabbed the other’s Support Workers clothes and tried to pull them to the ground. Fortunately, I was a third person present, so I was able to help the second Support Worker get safe. That’s not always the case.
This isn’t a once-off. This is a regular part of life for T , for his Support Workers, and for our family.
And that is why cutting 50% of his Community Access Supports is a very, very, very bad idea.
Cuts or no cuts, T will still access the community. Only it will be less safe for him, and a whole lot more dangerous for the community and for the people who support him.
There is immense privilege in never having to need this support, but when you do need it, it is an absolute necessity – not a budget line to be cut.
Every person with a disability is different, and making wide, sweeping changes puts severely disabled children and adults’ lives at risk, even more so than they already are. b. Proposed removal of 10% In-Home Supports.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1159
In-home Supports are not an optional support for many disabled people either, but even more so for profoundly Autistic and severely disabled people, such as my son, T .
A reduction to in In-home Supports will have a very real impact on the quality of life of disabled people. For my son, T , he requires full-support for all aspects of daily life, and it goes far beyond those of a typical 9-year-old child.
Cutting this support means that severely disabled people, like T , would be unable to have a shower, manage incontinence, have support with hydration and mealtimes, or ensure that their environments is safe.
If you still aren’t convinced and think that cutting 10% of T ’s In-Home Supports is a bad idea, then the plywood walls (because he regularly smashes through gyprock), or the anchored fridge (because he pulls and pushes a full size fridge around) or the eviscerated oven (from an escalation when he broke the door and pulled the internal out) would disagree with you.
And if the cuts are made?
T will still be a living, breathing child, with the same level of needs and the same level of in-home supports required, only he won’t get them, and as a result his quality of life will deteriorate and the Support Workers who care for him and our family - we will suffer too.
Again, every person with a disability is different, and making these generalised changes will be life- threatening for many disabled children and adults. 4. Removal of participants from the NDIS when there are no supports or structures in place to provide necessary interventions.
I believe that access to the early intervention provided by the NDIS in T ’s early years has contributed to his current ability to engage with the world, and that without it, his disabilities would be significantly worse.
As T ’s parent, it is my responsibility to advocate for him, but I would be doing my fellow parents and society in general, a disservice if I didn’t also advocate for the children like him who are yet to access the support they need and deserve as our next generation of Australians.
We cannot, in all good conscience, allow disabled children and adults to be removed from the NDIS without a transition plan in place to enable them to access the disability supports they need.
What Is Needed? The existing NDIS needs to change, there is no doubt about that, from my lived experience.
The current system has failed my family because it has no capacity to support children who require care outside of the home, even though those children have existed since the very concept of disability was understood.
I would propose the following:
- An accessible consultation period wherein meaningful consultation is undertaken with the disability community, providers, advocacy organisations, and people with lived experience caring for severely disabled children and adults.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1159
- An established transition plan for NDIS participants who are to be removed from the scheme and transferred to alternative supports, ensuring that these supports are both present and have the capacity to deliver the therapy required.
- Independent assessment of NDIS participants needs with the capacity to both roll-over plans and/or seek reassessment without incurring unnecessary reporting and assessment costs on annual plans where the participant’s disabilities are considered stable by their therapeutic team; but also allowing for review when participants with dynamic disabilities require a review or change of circumstances.
- Reduce or remove cancellation fees when services cannot be provided due to medical or disability-related issues. Disabled people are significantly more likely to become unwell and to require hospitalisation (Australian Institute of Health and Wellness) which means that they are unfairly represented in cancellations of services and disabled peoples are essentially being charged fees for traits inherent to the demographic of clients the providers choose to service.
- Establish a section of the NDIS to explicitly address and support NDIS participants who are complex and severely disabled, with staff who are experienced in this level of severity and are able to support dynamic, permanent disabilities so that appropriate and effective supports can be directed where they are needed, in a timely manner, preventing participant crisis’ and facilitating inter-agency communication.
- Recognition that not all NDIS participants under the age of 18 can remain living at home and may require inter-agency co-operation to support them to live safely with their disability and establishment of a clear, identifiable path for parents who need to engage in this process, with the goal of minimising trauma and maximising retaining the existing family relationships to the best outcome for the child.
- For the above process to be possible without having to relinquish the accommodation or medical aspects of parental responsibility. It is a cruel and outdated practice to force parents who can’t meet their severely disabled child’s needs in the home to relinquish aspects of parental responsibility in order to access residential support for their child. This is particularly pertinent when the parent has full capacity to parent the child once they are in an appropriate voluntary out-of-home care placement and there are no indicators for concern, as in my family’s case.
Conclusion
I urge the committee to hear the voices of the disabled community and those who care for them.
I invite the Committee to come spend an hour or two with my son, T , and I, to understand the everyday challenges of severe disability in a concrete, real-life way.
I ask the Committee not to allow these changes to progress as they are.
The Australia I know and love can do so much better than this.
Regards,
Stacey