Submission 3332 — Name Withheld (3332

SUBMISSION TO THE SENATE COMMUNITY AFFAIRS

LEGISLATION COMMITTEE

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for

Future Generations) Bill 2026

Submitted by July 2026

I am a participant in the National Disability Insurance Scheme, and the mother of two sons who are participants too. Every adult in my household lives with disability. There is no well, non-disabled adult among us. I make this submission to place before the Committee a single body of evidence, drawn entirely from the Agency’s own records released under freedom of information, that goes to the assumption at the centre of this Bill.

1. The assumption this Bill relies on The reasonable-and-necessary provisions the Bill retains rest on a principle: that funding takes account of what it is reasonable to expect families, carers and informal networks to provide. That principle assumes there is a well adult standing behind every participant, available to absorb the care the scheme declines to fund. I want to show the Committee what that assumption actually is inside the Agency’s own systems. It is not a principle carefully weighed for each family. It is a default the assessment screen has been running, mechanically, since 2023.

2. What the Agency’s own intake instrument does In answer to a freedom of information request, the Agency released, in full, the Personal and Environmental Circumstances intake used in its PACE system: the structured questions a planner works through when a person applies to, or is reassessed by, the scheme (FOI 24/25 0141). I ask the Committee to weigh what the instrument does, not what the explanatory material says it intends. Four features are on the record and can be verified by anyone reading the released document. First, the adult intake form has no question asking whether the participant cares for anyone. It asks only who is available to care for them. The forms for children include a dedicated carers section. The form for a participant aged fifteen and over does not. There is nowhere on the adult form to record that the participant is themselves a carer.

— Submission to the Senate Community Affairs Legislation Committee 1

Second, informal care is scored as a percentage that reduces what the scheme will fund, and there is no check on whether the person providing that informal care is themselves disabled. The Agency’s own guidance confirms that it considers a participant’s informal supports in determining funding, and that it does not fund informal supports. In this instrument the carer has standing only as something that lowers what the participant needs funded. Never as a person with needs of their own. I should be precise about the release. Two of the released documents were partially redacted under the personal-privacy exemption, covering worked free-text examples that might identify real participants. That redaction is narrow and, in my view, legitimate. It leaves the instrument itself entirely intact and public. Nothing in my argument depends on the redacted material. Third, there is no unit downstream that sees a family. In answer to a further request, the Agency disclosed that at least 10,778 children in the scheme have a parent who is also a participant, and at least 356 have two parents who are both participants (FOI 24/25-1124). Those are floors, not counts. The Agency’s own note records that parental role is not a mandatory field in its system, so every such figure understates the true number. When I asked, in the same request, whether those families share a coordinator, the Agency refused the question, and explained why: complex case managers are assigned to individual participants and not to families, and it cannot say whether a single one of those families is coordinated as a family. It can count us. It has built no way to coordinate us. Queensland, where I live, carries one of the heaviest loads on this measure of any state. Fourth, no policy sees the disabled parent at all. In answer to an earlier request, the Agency confirmed there are no documents setting out special considerations for disabled parents, and that the same policy and principles apply in determining a participant’s support whether or not they are a parent (FOI 23/24-0256). The only related documents the Agency held concerned children leaving the family home. None of this is new, and none of it belongs to one government or one party. The intake articles the Agency released are marked as approved in the Tasmania PACE pilot in March

2023. The one-directional structure has been operating since then. This is an architecture built across governments, and it is the architecture this Bill would now write into primary law.

That  is the point  I most want the Committee to hold. The  Bill does not introduce the

assumption that a well adult is always available. It legislates a default the assessment screen has run since 2023, and it does so without ever building the one question that would test the assumption: whether the adult it assumes is themselves a participant, or themselves disabled. — Submission to the Senate Community Affairs Legislation Committee 2

3. What this costs a household like mine I am not describing an abstraction. I am describing the screen my family is assessed against. Our household holds three plans, mine and both my sons’. My husband could apply for a fourth in his own right. He has not applied, and not because his needs are too small. It is that a household can hold only so many separate, individually administered supports before their combined weight begins to break it. Each plan brings its own support workers into the home, its own coordination, its own invoicing, its own administration. There is a ceiling on how much of that one family can carry, and with three plans we are already at ours. The scheme has no way to see that ceiling, because it has no unit that looks at the household. It assesses people who share one kitchen as though they lived in separate houses. Underneath each of those assessments is the same assumption: that a well adult is available to provide the informal support the scheme declines to fund. Every adult in my household is disabled, a participant, or both. There is no well adult here for the assumption to draw on. The care my husband and I provide our children, and the care we provide each other, has no field on the adult form to enter. It is discounted against each plan and counted for none. In the scheme’s own arithmetic, our care is costed at zero, three times over. I want to name the assumption underneath the question every family like mine is eventually asked: can’t your husband, or whoever catches everything, do more. It assumes that an adult who cannot hold paid work must therefore have spare capacity to give. Being unable to work because of disability, caring, or chronic illness is not the same as being unproductive, and it is not the same as being available. My husband and I are productive in every waking hour. What we produce is care. There is no spare adult in this house, and there is no spare hour in the adult who catches whatever falls. There is a cost in this assumption that appears on no plan, and I want to name it, because a lifetime of it does real harm. To be told, over and over, that you could do more, when you are already at the limit of what your body can give, is not a neutral request. It teaches a disabled person to read their own limit as a failure of will, and to hide what it costs to push past it. The level I make myself function at for my children, on the days my body has nothing left, is not evidence that this assumption is safe to write into law. It is evidence of what the assumption takes. A parent who keeps their child clean, fed and cared for while their own body is past its limit has not proven they had capacity to spare. They have shown what it costs to keep a child safe after a system has decided, in advance, that they can simply do more. I want to be plain about where this leads, because this Bill is framed around integrity and fraud. When a family at its limit says it cannot do more, the informal-support assumption — Submission to the Senate Community Affairs Legislation Committee 3

does not receive that as a fact about the household. It receives it as a claim to be tested, and in operation that testing slides into suspicion, the quiet assumption that a family reporting unmet need is exaggerating, or gaming the scheme. A household being failed by an architecture that cannot see it is treated as though it might be defrauding one. That is the assumption doing harm. It is not integrity being protected. My husband and I spent most of our working lives in healthcare, caring for other people every day. Even we could not see a household like ours until we were living inside one. Life had to pin it to my head with a neon sign. If two career healthcare workers were blind to this until it happened to them, a scheme with no field for it will not see it at all. I did not choose to leave my career in my prime. One ordinary Tuesday changed the direction of my life, and my health has not stopped taking from it since. Long before the scheme ever assessed me, my household was already choosing each week which tasks would go undone. The choice has since narrowed to the floor: what has to happen today so that our youngest is clean, fed, and still growing. That is what is left when the assumption that adults can simply do more is applied to a house that has no more to give.

4. A decision being made on absent and contested data I want to place beside this a second concern, about the evidence on which this Bill is being advanced. When another requester asked the Agency, in 2023, for data on disabled parents in the scheme, the Agency answered that the data could not be produced at the granularity required, and that compiling it would be an unreasonable diversion of resources (FOI 23/24 0256). Two years later, the Agency produced, for me, a count of exactly that relational data, by state, granted in full (FOI 24/25-1124). I am careful about what I draw from that, and I do not say the Agency was untruthful. The parent-to-child link was in the system the whole time; it lives in the relationship field the instrument already records. What one decision-maker described as unproducible in 2023, another simply produced in 2025. When an agency says data does not exist, it can mean the relationship is absent, or it can mean the query has not been built. Here it was the second. There is a pattern in how these requests were handled that the Committee should also see, because it bears on whether participants can hold this system to account at all. Each of the three requests I have referred to was met with a deemed refusal, where the Agency’s own delay ran past the statutory deadline, and in each case that delay extinguished the requester’s right to internal review. One requester granted the Agency an extension, complied with — Submission to the Senate Community Affairs Legislation Committee 4

everything asked of her, and lost her review right anyway when the Agency delivered late regardless. Surfacing the architecture I have set out took three separate requesters, three deemed refusals, and months of unpaid work by people the scheme is meant to serve. The absence at the centre of this system is only visible to those with the stamina to extract it. That cost is part of the finding. So this is the position. The Committee is being asked to write a harder, permanent version of the informal-support assumption into primary law, on the strength of an assessment screen that has never had a field for a disabled carer, a data architecture with no family-level unit, and a freedom-of-information process that extinguishes review rights through delay. That is not an evidence base for a reform of this scale. It is the absence of one.

5. The permanence changes, on the government’s own Impact Analysis and the Bill’s own text I made submissions on the permanence test in Part 8 earlier in this inquiry. I add here what the government’s own Impact Analysis, and the Bill’s own text, now make plain. The Analysis identifies the target of the change without ambiguity: the Federal Court’s decision in National Disability Insurance Agency v Davis (2022), which it says “shifted the permanence test away from its original intent” (Impact Analysis, p.31). The reading the court had given — that “permanent” means enduring rather than irreversible, that a “remedy” means a cure or removal rather than mere relief or improvement, and that treatment must be one a person can in reality access — is precisely the reading the reversal strips out. On the last of these the

   Bill is explicit: new section 25A(2) provides that treatment is appropriate “regardless of

whether the person’s individual circumstances restrict the person from accessing the treatment”, and the note confirms those circumstances “include the person’s financial circumstances and geographical location”. A treatment a person cannot afford, or cannot reach, still counts as a treatment they were required to have undertaken. The reversal removes the protection that mattered most to people with progressive, fluctuating and treatment resistant conditions. I am one of those people. My conditions are progressive and incurable. I have had more than fifty surgeries because of my disability, twenty of them in the last five and a half years, and I am not finished; the next is already on the horizon. Those surgeries do not cure anything. They manage the consequences of a disease that cannot be cured. A permanence test built on the exhaustion of all appropriate treatment asks a person to prove there is nothing left to try, and for a progressive condition there is always something left to try. Applied to me, the

— Submission to the Senate Community Affairs Legislation Committee 5

continuation of treatment would be read as proof that permanence has not been established, which is the opposite of the truth. There is one line in the Bill I would ask the Committee to weigh above the rest, because it is the government’s own. The Part that makes this change is headed “Tightening meaning of permanence to reduce access where an impairment can be treated” (Schedule 1, Part 8). The purpose is not something I have inferred from the provision’s effects. It is named, in the heading of the Part, as reducing access. Two further features make the case against this change on the government’s own terms. First, the Impact Analysis does not defend it as a cost measure. It concedes that the impact of the Davis decision “is not believed to have had a significant impact on Scheme costs currently” (Impact Analysis, p.32), points only to an unquantified future risk, and justifies the reversal instead by reference to “confusion about the test” of permanence. It further concedes that “more detailed, actuarial modelling is needed” before the permanence changes could be implemented (Impact Analysis, p.32). A change defended on the ground of confusion, whose cost effect the government cannot presently identify and has not yet modelled, is not the sustainability measure the Bill’s title claims. Second, whether an impairment is permanent is at heart a clinical question, yet the Bill fixes it by statutory definition. New section 25A defines “appropriate treatment”, and provides only two exceptions to the requirement that a person exhaust it: where there is a medical reason a person cannot undertake the treatment, and where the person falls within circumstances the Minister determines in the NDIS rules (Bill, section 25A(3) and (4)). The core judgement — whether treatment is “appropriate”, and whether an impairment will persist for a person’s lifetime — is governed by statutory definition and by ministerial rule, not by the clinicians treating the person. The one clinical element the Bill preserves is the narrow exception for medical treatment a person cannot undertake for medical reasons. Beyond that, the treating clinician’s judgement does not govern the test.

6. Recommendations I ask the Committee to recommend the following. Recommendation 1. That the reasonable-and-necessary and informal-support provisions not treat any person as available informal support where that person is themselves a participant or a person with disability, and that the assessment instrument be amended to test for this before any informal-support discount is applied.

— Submission to the Senate Community Affairs Legislation Committee 6

Recommendation 2. That the adult assessment form be amended to include a field recording a participant’s own caring responsibilities, so that a disabled carer’s load can enter the system it is currently invisible to. Recommendation 3. That a family-level coordination function be established for households with two or more participants, so that the families the Agency can already count are also coordinated as families, and so that the cumulative administrative burden a single household carries is assessed as one load rather than several. Recommendation 4. That the Bill not proceed to write the informal-support default into primary law while the assessment screen has no check on whether the assumed carer is disabled, and while the foundational and replacement supports intended to sit alongside the reductions are not yet designed, funded, or operational. Recommendation 5. That the permanence amendments in Part 8 not proceed without independent clinical governance of the appropriate-treatment test, and that the reversal of the 2022 Federal Court decision be withdrawn or deferred, given the government’s own concession that the decision is not a current cost driver and that further modelling is still required.

7. Conclusion The Bill is called Securing the NDIS for Future Generations. I would ask the Committee to weigh the word securing against what the Agency’s own records show. A scheme is not secured by writing an assumption into law that its own screen has never been built to test. When a household’s physical capacity cannot be stretched any further, and the assumption that adults can simply do more is applied regardless, the household does not quietly absorb it. It breaks. The informal-support network, however fragile it already was, breaks with it. And people die. My family is the household that assumption was not written for, and cannot see. We are not rare. The Agency can count at least ten thousand of us. It has simply never built a way to look.

— Submission to the Senate Community Affairs Legislation Committee 7