Submission 598
Submission to the Senate Standing Committee on Community Affairs
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitter details
Capacity in which I am writing: Parent and NDIS nominee of an NDIS participant.
Submission 598
Submission
About me
My son just turned ten. In January 2025 he developed an autoimmune neurological condition called GFAP astrocytopathy, which left him with an acquired brain injury and a spinal cord injury, both permanent. He also has autism spectrum disorder (Level 2), ADHD, childhood apraxia of speech, and hypermobility syndrome. He uses a manual wheelchair for distances longer than around the house. He cannot always tell us what hurts when he is hurting. His current NDIS plan was put together shortly after his discharge from 6 months in hospital. The delegate has disregarded the hospital discharge report & labelled his current plan as “Hospital Discharge Plan Not suitable for renewal.”
His plan reassessment is due in June this year. So I have read the Bill, and I have read the Minister’s second reading speech of 14 May, and I am writing because if this passes as it currently stands, the changes will not just affect my son’s next plan. They will determine whether he has a future in this scheme at all. They will also hand a level of unchecked power to one person, the Minister of the day, that I do not believe Australians intended for any government scheme, let alone the one that supports our most vulnerable.
I want to address specific provisions of the Bill. I am not going to walk through all 113 pages. I want to focus on the parts that frighten me most, and explain why, from where I sit.
Schedule 1, Part 4 the Minister can cut funding for an entire category of supports by decree
This provision allows the Minister, by legislative instrument, to reduce funding for an entire category of supports across every participant’s plan at once. Not after individual assessment. Not after any consideration of a specific participant’s circumstances. By a number written into an instrument.
The Bill explicitly states that this is valid even if the result is that a participant’s plan no longer covers the full cost of their reasonable and necessary supports.
I read that sentence three times to make sure I was reading it correctly.
The Act is built on the principle that supports are reasonable and necessary for the individual. For my son specifically. Not for a category. Not for a budget line. For him, based on his needs, after an individualised assessment. This provision does not modify that principle. It overrides it. A minister, sitting in an office in Canberra, can decide that a category my son depends on, mobility, community participation, capacity building, will from a given date be cut by 50 per cent. He will not have been assessed. His circumstances will not have been considered. The cut will simply apply.
And these determinations are exempt from sunsetting. They do not expire. They do not need to come back to Parliament for re-approval. Once made, they remain in force until a minister decides otherwise.
I do not understand how this can be reconciled with the individualised support principle the NDIS was built on. I would like the Committee to ask the government to explain it. Because as it reads, this provision gives one person the unilateral and indefinite power to reduce the supports of more than 700,000 disabled Australians, without anyone individually signing off, without anyone reviewing, and without Parliament ever voting on it again.
Schedule 1, Part 9 the Minister can declare any service an “alternative support” for any impairment
Submission 598
This is the provision that should worry every family in the NDIS, but particularly families of young children. Inside the compensation scheme exclusions in Part 9 is a power for the Minister to declare, by legislative instrument, that a particular support is an “alternative support” for a particular impairment. When that happens, that impairment is excluded from the NDIS access assessment.
There is no limit on what the Minister can declare. There is no requirement for parliamentary approval. There is no sunset clause.
If the Minister declares that Thriving Kids is an alternative support for developmental delay or autism, every child with one of those diagnoses, however severe, has an excluded impairment. They are not in the NDIS. They are in a foundational supports stream that is funded at a fraction of the level, and that most states have not begun building yet.
My son’s primary impairments, an acquired brain injury and a spinal cord injury caused by an autoimmune condition, sit in the neurological and physical impairment categories under the NDIS Act. His autism is real, and substantial, and contributes to his support needs every day. But it is not his primary impairment. If the Minister can decide that Thriving Kids is the “alternative” for autism, the framing of one impairment in a child’s file becomes legally everything. One paragraph, in one ministerial instrument, with no parliamentary vote, could route enormous numbers of children with autism out of the scheme they currently depend on.
The same logic applies across the scheme, using supports that are genuinely funded by the NDIS today. If the Minister can declare that public health speech pathology services, with their well-documented multi-year waiting lists, are the alternative support for childhood apraxia of speech, then that impairment is excluded. If the Minister can declare that hospital outpatient occupational therapy is the alternative for daily-living impairments, that impairment is excluded too. If the Minister can declare that school based learning support is the alternative for cognitive impairment, that impairment is excluded as well.
The breadth of this power, combined with its exemption from parliamentary disallowance, is without precedent in the NDIS Act. I cannot find another provision that allows one person to redefine the boundaries of access for hundreds of thousands of Australians without a parliamentary vote.
Schedule 3 automated decision-making
This Bill gives an algorithm the legal power to form a “state of mind” about a disabled person’s support needs.
On 14 May, the Minister stood up in Parliament and said: “This government will not repeat those mistakes.” He was talking about Robodebt. Then he introduced this provision.
The Royal Commission into Robodebt found that automated decision-making applied to vulnerable people, without proper human review and without transparency, caused enormous harm. The Commission handed down its findings in 2023. The government that received those findings, and made public commitments off the back of them, has now introduced a Bill that puts automated decision-making at the centre of how funding decisions will be made about disabled people, including children.
The Bill does not say what data the algorithm will use. It does not say who enters that data. It does not say what training those staff will receive. It does not say how the algorithm reaches its conclusions. It does not say how a participant appeals a decision when they cannot see the working. All of that is left to instruments that Parliament will not vote on.
I have already, in my son’s case, used Freedom of Information processes to obtain internal NDIA documents to understand how decisions about him were being made by humans. I know firsthand how difficult it is to challenge a decision when the reasoning is hidden. An algorithm makes that immeasurably worse. The reasoning is not just hidden, it does not exist in a form anyone can interrogate.
Submission 598
If a planner makes a wrong decision about my son, there are people I can write to, evidence I can submit, processes I can use. If an algorithm forms a state of mind about my son’s support needs, who do I write to? Who explains the reasoning? Who is accountable when it gets things wrong?
The Bill does not answer any of these questions. It leaves them to be answered after the Bill passes, by instruments Parliament cannot disallow.
Schedule 1, Part 3 “arising directly from an impairment”
This change adds one word, “directly”, to the test for whether a support can be funded. The government has not explained what “directly” means in practice.
My son’s disabilities do not operate in clean, separate lanes. His brain injury and spinal cord injury affect his mobility, his fatigue, which compounds his autism overload, which triggers behavioural escalation, which affects his school participation, which affects his learning. Every link in that chain is documented in reports written by his clinicians. Every link is real. Under the current test, the supports that address those cascading effects are fundable because they arise from his impairment.
Under the new test, a planner or an algorithm can ask whether the support arises directly from a listed impairment. The fatigue support is two steps removed. The behavioural support is three. None of it arises directly. All of it can be denied.
The Committee should not let this Bill pass with the word “directly” undefined. If the government has a definition, they should put it in the Bill. If they do not have one, they should not be asking Parliament to pass it. Because once it commences, “directly” will mean whatever a planner, an algorithm, or a future ministerial instrument decides on the day, and the families whose lives are affected by that decision will be left to fight for an interpretation case by case.
Schedule 1, Part 1 read alongside Part 6 the impossible mathematics
Part 1 of Schedule 1 says functional capacity will be assessed as though my son’s wheelchair, his home modifications, and the support of his family do not exist. As though he were alone, in a generic environment, without any of the things that currently keep him safe.
Part 6 of the same Schedule says the planning decision must take into account what his family can reasonably provide.
So the assessment says: pretend his family does not exist. The funding decision says: his family will do it.
I do not understand how both of those can be in the same Bill. I have read it carefully and I cannot reconcile them. The participant gets the worst of both positions. Assessed as though alone. Funded as though supported.
The Committee should ask the government to explain how a piece of legislation that, in one provision, treats informal supports as non-existent and, in the next, treats them as a substitute for funded supports, is logically coherent. Because as written, I do not think it is.
Schedule 1, Part 5 automatic plan renewal
When my son’s current plan reaches its end date, under this Bill, it will renew as an identical copy. No reassessment. No review of whether his needs have changed, whether the framing of the plan was right in the first place, or whether the supports in it were ever adequate.
My son’s current plan has been flagged by the delegate as “Hospital Discharge Plan Not suitable for renewal.” That framing did not come from his treating team. The Sydney Children’s Hospital discharge documentation on
Submission 598
his NDIS file describes his impairments as “lifelong and permanent” The “Hospital Discharge Plan” wording and the “Not suitable for renewal” notation came from the delegate’s own internal justifications. I obtained those justifications through Freedom of Information. They contain characterisations of his support needs that depart from what his treating doctors and specialists had medically documented and verified.
Under this Bill, that delegate framing simply locks in. The plan auto-renews. The clinical evidence that contradicts the delegate’s characterisation has nowhere to go. The participant has no mechanism to correct it without proving substantial deterioration, which under Part 2 of the same Schedule is the only basis for an unscheduled reassessment.
So a participant whose plan was framed by a delegate in a way that contradicts the clinical record is locked into that framing, with the only escape being deterioration the government’s own early intervention provisions say funding should prevent.
There are participants across this scheme whose plans contain delegate characterisations that depart from the clinical record. There are participants whose plans were dictated by a single planner who did not understand their disability. There are participants whose plans reflect hospital discharge framings rather than the long term picture their clinicians have documented. If this Bill passes then all participants won’t have the ability to either access the plan justifications or correct them. I do not believe this is what the Australian public understood “auto renewal” to mean.
What I am asking the Committee to do
I am asking the Committee to recommend that this Bill not be passed in its current form. Specifically:
-
That the ministerial power in Schedule 1 Part 4 to cut funding categories across every plan be removed; or at minimum, that any such instrument be subject to parliamentary disallowance and to a sunset clause of no more than two years.
-
That the ministerial power in Schedule 1 Part 9 to declare “alternative supports” for any impairment be removed; or at minimum, that any such instrument require positive parliamentary approval before it commences, not just the absence of disallowance.
-
That the automated decision-making provisions in Schedule 3 be either removed or significantly redrafted to specify what data is used, how the system reaches its conclusions, how decisions are reviewed, and how participants can challenge them. These details belong in the Bill, not in instruments to be written after it passes.
-
That the word “directly” in Schedule 1 Part 3 be defined in the Bill itself, with a bounded interpretation that does not allow the cascading effects of disability to be denied.
-
That the contradiction between Schedule 1 Part 1 and Schedule 1 Part 6 be resolved, with a single coherent treatment of informal supports across the assessment and funding stages.
-
That the auto-renewal provision in Schedule 1 Part 5 be substantially amended to give participants a legal right to view the information contained in their plan assessment, including the listed disabilities and the basis for the supports in the plan, so that the accuracy of both can be checked; and to require the NDIA, where errors are identified and the correct information is already on the participant’s NDIS file, to promptly correct those errors and update the plan accordingly. Plan content should be based on the verified clinical record on file, not on delegate opinions, comments, or errors.
-
That the government commit to genuine co-design with the disability community, including families, on the new planning framework before any element of it commences. The Bill cannot ask the disability community to accept a framework whose details will be settled later by ministerial instrument. That is not consultation.
A final word
I am writing as the parent of an NDIS participant. I am not an advocacy organisation, or a peak body, or a lawyer. I am tired, like every other parent in this scheme is tired. Parents do not write submissions because we have time. We write them because the alternative is silence, and silence gets read as consent.
Submission 598
If you take nothing else from this submission, please understand that this Bill, as it stands, hands one person, whoever happens to be Minister at any given moment, the power to reshape the boundaries of access and funding for the most vulnerable Australians, without parliamentary scrutiny, without sunsetting, and with no one clearly accountable.
That is not how a scheme like this should be governed. The original Act required individualised assessment, parliamentary oversight of major changes, and decisions made by humans who could be held to account. This Bill removes all three. Please do not pass it as it stands.
Thank you for considering this submission.