National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2291
Submission to the Senate Community Affairs Committee
Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am writing this submission to contribute to the Inquiry into the proposed changes to the NDIS, (Securing the NDIS for Future Generations) Bill 2026. I write from my positioning as an exhausted, time-poor, full time working single mother to a young man (participant) with multiple disabilities and health conditions. I am also a social worker, an academic and researcher. I am a sister, a partner, a colleague and a friend. I am also part of a community; where and when I can I try to support blind and low vision people in my son’s community to lead a full, meaningful life, a right we all have.
I welcome the opportunity to provide input. I really hope you give them my submission the time and interest it affords as each time I write documents like this, impact statements, emails…the list is endless, it takes a toll. This is a personal plea but it is also broader than that - the proposed reforms have significant implications not only for participants like my son, but the broader service systems that support them and the so-called ‘informal supports’ like me, who will continue to disproportionately bear the brunt of the responsibility with the impending cuts to plans.
My key points:
The reforms risk increasing the already huge burden of care onto people like me, unpaid carers – WOMEN, MOTHERS. I already fill the gaps in the system; I can’t do anymore. I just can’t. Society should not expect or ask me to.
My son’s disabilities are lifelong: requiring ongoing proof of “permanence” does not reflect our reality and creates unnecessary uncertainty.
A single standardised assessment cannot capture the compounding impact of multiple, interacting disabilities such as blindness and autism.
Functional assessments taken at a single point in time risk misrepresenting what my son can actually manage safely and consistently in everyday life.
Support needs are not static or easily measurable.
Reducing community and participation supports will not reduce need. All it will do is simply transfer that responsibility back onto families. We are already doing it tough.
These changes feel less about supporting people with disability and more about narrowing access through higher and more uncertain thresholds. The focus should be on the systems and rules that enable providers to charge ridiculous amounts and untenable systems where I have to pay $500 for a report to get approval for a $50 cane for my son.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2291
- Functional capacity: I am concerned that the proposed use of a single standardised assessment tool does not reflect the reality of living with multiple, interacting disabilities. As a parent of a child who is both blind and autistic, I see every day that these conditions cannot be separated or understood in isolation. My son’s blindness limits his access to visual information, which most people rely on to support communication, social understanding, and navigating the world. At the same time, his autism affects how he processes information, communicates, and engages with others. This means that strategies that might help with one disability are not always available or effective for the other. In our daily life, the impact of these disabilities is not simply “added together” but rather they compound each other in ways that make ordinary situations much more complex. For example, my son has a life-threatening nut allergy. Because he is blind, he cannot read food labels or menus. Because of his autism, he does not always have the confidence or capacity to communicate his allergy clearly in unfamiliar or busy environments. Yet if you asked him in an assessment, he would likely say that he always tells people, because he wants to be seen as capable and treated with respect.
This gap between what he would say he can do and what actually happens on an everyday everynight basis is exactly what concerns me about a standardised, single assessment tools that only capture points in time. These tools risk taking responses at face value and missing the context, support, and effort behind them. From my perspective, an assessment that looks at functional areas separately does not capture the complex challenges my son faces, and risks underestimating the level of support he needs to be safe and participate in his communities.
- Permanence I am also deeply concerned about the proposed changes to how “permanence” is defined. As a parent, this is particularly confronting because my son’s disabilities are lifelong. I believe that under the proposed approach, I may still be required to demonstrate that all possible treatments have been explored before his disability is recognised as permanent enough to access support. In reality, this does not reflect our experience. There is no pathway where my son will “recover” his vision, and while supports can help him develop skills. Autism is not something that can be resolved through treatment. I have taken my son to so many groups and events I’ve lost count. But over the last 21 years, I can see some tiny changes, almost miniscule, but importantly, life changing for him and me!
I am also concerned that these changes move the focus of reform away from systemic issues and toward tightening participant eligibility. While there is public discussion about fraud and sustainability, the practical effect of narrowing permanence appears to fall on people like my son, individuals with complex, lifelong disabilities whose needs do not fit neatly into fixed categories.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2291
I am concerned that this focus on permanence creates uncertainty and places the burden back on families to justify what we already know to be true in our daily lives. It also does not account for the complexity of raising a child with multiple disabilities, where support needs are ongoing, evolving, and not reducible to whether a treatment has been attempted or not. For me, this shift feels less about understanding disability and more about setting a higher and more uncertain threshold for access.
- Withdrawal of community supports When my son was a toddler, he used to sit there and rock back and forth, stim with his hands and feet, focus on washing machines and chew on tyres and batteries and anything really. Over the years we have had supports, which I have had to fight very hard for, to help me help him. A key support has been community and social participation supports provided by support workers. Not a perfect system, but I have worked so damn hard to train and guide each person who enters our life.
I am deeply concerned about the proposed reduction or withdrawal of community and social participation supports, which are the foundation of my son’s independence, confidence, and connection to the world. Where my son is today is because of these supports. They have taken years to build, through consistent access to the right people, environments, and opportunities. The suggestion that participants can be transitioned off these supports and into broader so called “foundational” or community-based services does not reflect reality. From what I see, these alternative supports are either not available, not accessible, or not equipped to support people with complex and intersecting needs. Removing NDIS funded community supports before viable alternatives are in place risks leaving people like my son without any meaningful support at all.
Without these supports, the impact is immediate and significant. My son’s ability to participate in the community, build relationships, and develop independence is reduced. This is not just a loss of funding, it is a loss of opportunity, dignity, and inclusion. The likely outcome is increased isolation, and a regression in the progress he has made over many years. He said yesterday after a day out with the support worker at a pub watching the footie: “I had a good day. I talked to some new people. I kept being positive all day.” Who will do this when his funding is slashed?
If these supports are reduced, I will be required to step in even more than what I already am, to fill those gaps, taking on roles that are not sustainable, and that undermine my son’s independence as a young adult who should not have his mother take him to social events. Removing community supports does not remove need but rather removes opportunity, and shifts the burden onto families, and specifically mothers like me, which is my final point.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2291
- Impact on unpaid carers – women – mothers!
As a mother and primary carer, these proposed changes are not abstract policy shifts; they are deeply personal. I already carry significant responsibility in supporting my son to navigate a world that is not designed for him. This includes managing his safety, communication, routines, and health needs, often in ableist situations. He is finally in a place where he has a tiny bit of independence, of meaningful participation in the community. Pulling back community and participation supports will mean that me, his 57 year old mother, will have to come back in and start doing these things. NO YOUNG MAN SHOULD HAVE HIS MOTHER TAKE HIM TO SOCIAL EVENTS LIKE THIS! he needs to do it with support workers closer in age, who can role model and introduce him into social appropriate interaction and engagement.
What is particularly difficult is the emotional impact of these changes. There is a growing sense that people with disabilities are being viewed through a lens of cost and scrutiny rather than dignity and support. As a parent, this is deeply unsettling. It feels as though I am being asked not only to advocate for my son, but to defend the legitimacy of his needs in an environment that is becoming increasingly sceptical. This takes a toll. I am scared. I don’t sleep well at night worrying about this immediate and long term future. I wake at 3am thinking, what will I do when he loses the tiny little bit of vision he has left and there are no supports left through the NDIS? How do I do this at 65? Who will do it when I am gone? These people need to be in his life throughout, not just brought it when I am no longer alive.
The support I provide is invisible and unpaid. I can manage it better because we have support workers in our lives, who whilst far from perfect and who I also have to coordinate, manage and train, are there. An extra pair of hands. Another voice to say ‘hey man, you can’t say that’. A voice that is not mine, his mother, constantly hassling him. We need this. It does take a village. We don’t have a village yet but these changes are taking away our chances of even coming close to it.
Thank you for reading my submission. Please afford it the respect and dignity it deserves.