Submission to the Senate Community Affairs Legislation
Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing
the NDIS for Future Generations) Bill 2026
I am the parent and carer of a young son with Smith-Magenis Syndrome, a rare genetic condition. He has been an NDIS participant since 2023, on the early intervention pathway. I have reviewed the Bill, and I am writing as a parent trying to understand what it means for my son’s future.
I want to be clear: I am not opposed to reform. I understand the scheme must be sustainable. My concern is this Bill — its design, its sequencing, and what it would mean in practice for a child like mine.
Early intervention is working — and this Bill puts it at risk
My son has a global developmental delay and will likely have a lifelong intellectual disability. Since accessing early intervention, he has made real progress — he communicates more than he once could, and behaviours linked to the frustration of not being understood, including self-injury, have reduced. That progress does not mean his needs have gone away. It means the support is working exactly as early intervention is designed to.
The evidence is well established: early intervention is one of the most cost effective investments the NDIS makes, returning multiple dollars in reduced long-term costs for every dollar spent. It works because it is family-centred — it takes a child’s environment, routines and circumstances into account. This Bill tightens access to early intervention at the moment it matters most. That is not just a risk to my family — it undermines one of the most fiscally responsible parts of the scheme.
The new functional capacity test does not reflect my son’s real life
The Bill defines functional capacity as what a person can do without assistance from other people, assistive technology or modifications, in a
context that excludes, as far as possible, their environmental and personal circumstances.
My son’s progress exists because of the supports around him. How he performs in a brief, unfamiliar assessment on a given day says nothing about what happens when support is removed from his daily life. Assessing him “without supports” captures an artificial best-case snapshot — not his reality. Early intervention works precisely because it accounts for the environment and circumstances this test is designed to exclude.
The rules that will decide my son’s future do not exist yet
My greatest concern is what this Bill does not contain. The methods, criteria and thresholds for assessing functional capacity are left to be prescribed later, through rules that will not face the same parliamentary scrutiny as this Bill.
I am being asked to accept a legal framework for my son’s future eligibility without knowing what it will require. I do not know how “substantially reduced functional capacity” will be defined for a child his age. I do not know who will design the test, or whether it will be built with any understanding of a condition like his. A parliamentary committee has recommended a written guarantee that no child would receive less support under new arrangements. That guarantee has not been given. Families like mine are being asked to trust a process whose most important details remain unknown.
What I am asking the Committee
Sustainability and rushed, undefined legislation are not the same thing. I ask the Committee to recommend that:
- This Bill not proceed until the methods, criteria and thresholds for functional capacity assessment are defined and available for genuine parliamentary scrutiny — not written after the Bill passes.
-
Any new assessment be independently validated for children with rare and complex conditions, whose needs are poorly captured by standardised tools built around common presentations.
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Early intervention be protected, given the clear evidence it reduces long- term costs and improves outcomes.
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No child lose support under any new framework until an equivalent, properly resourced alternative is demonstrably in place.
I make this submission not as an expert, but as a parent who has read what is being proposed and is genuinely worried about what remains unknown.
Thank you for considering this submission.