Submission 1595
Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submitted by: A Parent Carer of an NDIS Participant
Submission to the Senate Inquiry: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
My name is , and I am the mother of a 24-year-old son with severe and complex disabilities. He is entirely dependent on the National Disability Insurance Scheme to live safely and with dignity in his own home. I am writing this submission not as a policy expert, not as a lawyer, and not as a politician. I am writing as a mother who lives with the daily reality of what adequate — and inadequate — NDIS support looks like in practice.
I want to be clear at the outset: I understand that the NDIS needs stronger governance. I support efforts to eliminate fraud, waste and rorting that damage the scheme’s integrity. But I am deeply concerned that the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, introduced to Parliament on 14 May 2026 and now before this Committee, will cause serious harm — and in some cases, death — to participants with severe and complex disabilities if passed without significant amendment.
About My Son and Our Family
My son is 24 years old. He has a neuromuscular disease that results in extreme muscle weakness. He is cognitively unaffected and has graduated with a degree. Without appropriate NDIS funding, he cannot bathe, eat safely, manage his health, or remain in his home. He is not a statistic or a budget line. He is a person whose life—and whose safety—depends entirely on the decisions made within this scheme.
Our family has already experienced cuts to my son’s NDIS budget which has impacted on his SDA funding. These cuts were not the result of his needs decreasing—they did not. They were the result of decisions made by planners who, in my experience, lacked any clinical understanding of my son’s specific condition, its progression, and what level of support is required to keep him safe. We were given no meaningful clinical rationale. We were told, in effect, that the scheme needed to cut costs.
The impact of these cuts on our family has been profound. Our family has had to fill in the gaps—at significant cost to our health, employment, and our family’s financial security. I am not alone. Across Australia, families like mine are quietly absorbing the consequences of underfunded plans, often at enormous personal cost and in silence, because we are too exhausted and too frightened to speak up.
My Concerns About the Proposed Legislation
- Financial sustainability is now embedded as a legal test for support
Submission 1595
The Bill amends the NDIS Act to require that supports be provided “so far as is consistent with the financial sustainability of the scheme.” These words have never appeared in the Act before. For the first time, the budget not just my son’s clinical need becomes part of the legal test for whether his support is “reasonable and necessary.”
I am a mother, not a lawyer, but I understand what this means in practice. It means that a planner or an algorithm could look at my son’s plan and determine that what he needs is not what the budget allows. It means that the question “what does he need to live safely?” could be replaced by “what can we afford to give him?” Those are not the same question, and for people with severe disability, the gap between them can be the difference between life and death.
Algorithmic and non-clinical decision-making
The Bill introduces a new framework planning system with a “support needs assessment tool” and a “budget method” that will generate participant budgets. I am gravely concerned about the increasing reliance on automated processes and tools in place of genuine, clinically-informed human decision-making.
My son’s disability is complex. The risks to his health if his support is reduced are real and immediate. No algorithm and no planner without specialised clinical knowledge of his specific condition has the capacity to understand that. My son has had decisions overturned on review despite allied health and medical professionals’ medical evidence.
The NDIS was built on a promise that every person with disability would be assessed individually, on their own merits, with their own needs at the centre of the decision. A tool-generated budget that applies a mathematical formula to complex human need is not individual assessment. It is, as the founder of the NDIS once warned in another context, “robo-planning”, and we have already seen, with robo-debt, what happens when government applies algorithms to vulnerable people’s lives without adequate clinical and human oversight.
Cuts to participation and capacity building supports
From 1 October 2026, the Bill will reduce budget allocations for social, civic and community participation supports by 50 per cent, and capacity building daily activities by 10 per cent. The Government has said these changes “will not impact supports that are essential to critical care and daily living.”
With respect, that assurance does not reflect the lived reality of people with complex disability. For my son, participation and capacity building supports are not optional extras. They are the supports that keep him connected to his community, allow him to attend medical appointments and participate in his community. Cutting these supports does not save money in the long run. It shifts costs — to the health system, to state mental health services, to hospitals, and to families like mine.
The Government has projected savings of $37.8 billion over four years from this Bill. But where is the whole-of-government accounting? Where is the calculation of what Medicare, state hospitals, mental health services, Centrelink, and unpaid family carers will spend picking up what the NDIS stops funding? The Productivity Commission built the original case for the NDIS on exactly this kind of whole-of-government cost modelling. I urge this Committee to demand that same rigour now.
Submission 1595
Broader Ministerial powers and the removal of human oversight
The Bill also proposes broader powers for the Minister and the NDIA that may reduce participant choice and control, and enable budgets to be set and adjusted with less individual scrutiny. I am alarmed by any legislative architecture that removes human beings from decisions that will directly determine whether my son can safely live his life in an environment that meets his complex needs. The NDIS was designed to be a human scheme. A scheme where a person sits down with another person and works out what that individual needs to live well. Every provision in this Bill that replaces a human decision point with a ministerial determination, a budget method, or an automated tool moves us further away from that founding vision. For people with severe disability — people who cannot advocate powerfully for themselves, who cannot navigate an appeal without support— the removal of human oversight is not an efficiency measure. It is a risk to their lives.
The Impact on Families and Carers
I want this Committee to understand what inadequate NDIS funding does not just to participants, but to the families who love them. When support is cut, families do not abandon their loved ones. We absorb the shortfall. We reduce our hours of paid work. We forgo our own healthcare, our own rest, our own lives. We do this not because we are required to, but because the alternative is watching someone we love go without. The stress and pressure that current and proposed NDIS changes are placing on families across Australia is immense. Many of us are already at breaking point. The prospect of further cuts, delivered at speed with minimal genuine consultation and no adequate clinical safeguards, is causing significant anxiety and distress in our community. It is causing people to fear for their own futures and for the futures of their children. I am not being dramatic when I say that some people with severe disability will be harmed, and some will die, if this legislation passes without fundamental amendment. That is not a statement made in anger. It is a statement made in full awareness of what inadequate support looks like when someone has complex, life-threatening care needs and those needs go unmet.
What I Am Asking For
I respectfully ask this Committee to recommend:
- That any new support needs assessment tool or budget method be required, by law, to incorporate mandatory clinical review by qualified health professionals with expertise in the relevant disability for all participants with high and complex support needs, before a budget determination is made.
- That the proposed 50 per cent reduction in participation and community supports not proceed without independent, whole-of-government modelling of the downstream costs to the health system, mental health services, hospitals, and unpaid family carers.
Submission 1595
- That explicit and enforceable clinical safeguards be embedded in the legislation to protect participants with life-threatening or rapidly deteriorating conditions from algorithmically-generated budget reductions that do not reflect their actual medical need.
- That the Senate not pass this Bill in its current form, and that genuine, extended consultation - not a compressed two-week submission window - be undertaken with people with disability and their families before such significant changes to the scheme are legislated.
- That the voices and lived experience of family carers be formally included in the design and review of the new framework planning system, including the support needs assessment tool and budget method, before they are implemented.
I support a financially sustainable NDIS. I understand that the scheme must be properly governed to survive and to serve future generations. But sustainability cannot be achieved at the expense of the people the scheme was built to protect. Reform done carelessly, quickly, and without adequate clinical safeguards is not reform. It is harm.
My son and other Australians with permanent and severe disability deserve a scheme that sees them as a person with real and complex needs - not a number in a budget method. I am asking this Committee to make sure that is what he gets.
Respectfully submitted,
Parent
27 May 2026