Submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2568

Submission to the Senate Community Affairs Legislation Committee

InquiryintotheNationalDisabilityInsuranceSchemeAmendment(SecuringtheNDISfor

FutureGenerations)Bill2026

Submitted by: Roslyn Cooper

Date: 29 May 2026 Iconsenttothissubmissionbeingpublishedwithmyname.

Who I am, and why I am writing I am Roslyn Cooper — mother, advocate and primary carer of my son Gary, who is 44. Gary lives with profound and complex disability. He is non-verbal, and he needs support with every part of daily life. He cannot speak for himself, and his health can become life-threatening if his support is mismanaged. With the right support, he rides, hikes, volunteers, and lives a full life in his own home and community — a life he directs in his own way.

I do not write as an organisation or a professional advocate. Standing beside Gary for forty years gives me my authority to write. I have already, under the current Act, had to contest a decision that would have cut Gary’s support below what he needed — a decision made on assumptions about a man the decision-maker had never met. I contested it because the Act required that Gary be seen as an individual, and that his funding be tied to his own assessed needs. That ground — that he be seen as an individual, and that his funding be tied to his assessed needs — is precisely what this Bill removes. I have used the protections this Bill repeals, and I know what they are worth, because I have used them.

But I am not writing only for him. I am writing for the participants who have no mother, no advocate, no support coordinator — the ones who sit alone in the system, unknown and undefended, who will never send a submission to this Committee. If the protection of people with the most significant disability is the genuine purpose of this Bill, as Minister Butler has said, then those are the very people its provisions must be measured against. They are the people I ask you to keep in mind as you read what follows.

What I support in this Bill I support the measures aimed at the problem the Minister himself identified as the real one: fraud, and a provider market that, in his words, treated the scheme as an “ATM for shonks, grifters, fraudsters and crooks.” Strengthening the Agency’s powers over fraud, the payment system, and provider quality and registration is right and overdue — and I agree with the Minister that the fraud is “not” the doing of people with disability or their families. I also accept there is a genuine question at the margin of eligibility, where the line between disability and treatable conditions should fall. These are real problems, and I do not oppose addressing them.

My objection, in short My objection is this: the waste the Minister describes is real, and it sits in the provider market and at the margin — but the Bill’s central mechanism does not stop there. It reaches into the core, reducing the support of people with permanent and significant disability, the very people the scheme exists for. If the waste is in the provider market and at the margin, why does the

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mechanism reach the core? What follows is what I have been able to see, from the Government’s own documents, of how it is done.

The keystone: a change in what the scheme is The change that most fundamentally alters what the scheme is, is Item 60. It repeals the object in paragraph 3(1)(d) of the Act — to “provide reasonable and necessary supports, including early intervention supports” — and replaces it with an object to provide supports “that are reasonable and necessary, so far as is consistent with the financial sustainability of the Scheme.”

Item 60 is not a technical adjustment, and the Government does not claim it is. Its own Explanatory Memorandum says the purpose is to “embed the concept of financial sustainability of the scheme into the objects of the Act” — and the objects are the lens through which every other provision is read. The Memorandum is blunt about the effect: sustainability is “to be given effect through specific, structured constraints on decision making which determine to what extent particular supports may be funded as ‘reasonable and necessary.’”

Item 60 changes what the scheme is. Since 2013, “reasonable and necessary” supports are what the scheme funds — and because they are reasonable and necessary, they are funded. That is what makes an NDIS plan an entitlement rather than a discretionary grant. The days when people with disability and their families had no certainty the support would still be there next year ended with the NDIS. Item 60 takes us back. It makes the extent of funding for a reasonable and necessary support conditional on the budget: the need can be identified, assessed and recorded — and the funding withheld. That is the difference between an entitlement and a grant, and it is being written into the objects of the Act.

The Government’s own Impact Analysis confirms how significant this change is. It admits that, under the current Act, financial sustainability “does not and cannot translate into NDIS participant plans.” And the Federal Court has confirmed that a support found to be reasonable and necessary must be funded in full, not in part. Item 60 is designed to change that footing: to write the budget into the very purpose of the Act, so that financial sustainability can reach into the individual plan in a way it has not before. The same Impact Analysis describes the scheme’s defining feature as funding “determined by an assessment of individual needs (rather than a fixed budget).” This Bill moves the scheme toward the fixed budget — away from the very thing the Government’s own document says defines it.

The principles that place the person at the centre are repealed If Item 60 changes the scheme’s purpose, Item 66 changes its principles. Item 66 repeals Division 1 of Part 2 of Chapter 3 of the Act in its entirety. That Division is section 31 — the principles that have governed, since 2013, how every participant’s plan is prepared, varied and reviewed.

These are the principles that the preparation of a plan should “be individualised,” should “be directed by the participant,” should “maximise the choice and independence of the participant,” should “facilitate tailored and flexible responses to the individual goals and needs of the participant,” and should “be underpinned by the right of the participant to exercise control over his or her own life.” Item 66 repeals every one of them. Of the eleven principles in section 31, only fragments of three survive, and they are moved into a different section — section 17A, which is about participation. And two of them — the principles recognising the role of families

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and carers — are qualified by the words “where relevant,” so that even recognising a family’s role becomes something the Agency may judge irrelevant.

In place of the repealed principles, the Bill inserts a new section — section 17B — whose principles point the other way. Where section 31 directed the decision-maker to the individual participant, section 17B directs them to the scheme’s finances: “the financial sustainability of the scheme, having regard to reports of the scheme actuary,” efficiency, and equity “across participants as a whole.” This is the scheme’s centre of gravity being moved, in a single stroke, from the person to the system.

Section 31’s principles are not abstractions. The principles that a plan be individualised, directed by the participant, and underpinned by their right to control their own life are the ground people stand on when they challenge a decision — in an internal review, or before a tribunal. They are the words an advocate reaches for when a person has been treated as a category rather than an individual. Item 66 removes these principles and puts nothing in their place. The Act will no longer say how a plan should be made — only, through the new section 17B, what financial considerations must weigh on it. The question the Bill leaves unanswered is the one that matters most to every participant: if the plan is no longer required to be individualised or directed by the person, what is it now required to be? For any participant, this is the loss of the protection that required their plan to fit their life rather than a category. And for those who cannot speak for themselves, and have no one to insist they be seen as individuals, the loss is greater still: the principles that required the system to look at them as people, and not as a category to be processed, are simply gone.

The Government may point out that the Act’s general principles in section 4 — including the principle that people with disability and their families “should have certainty that people with disability will receive the care and support they need over their lifetime” — are not repealed by this Bill. That is true. But a principle is only as real as the machinery that enforces it. Section 4 promises certainty; the principles in section 31 are part of how that promise is kept, by requiring that plans be individualised and directed by the participant. This Bill leaves the promise of certainty standing in the Act while repealing the principles that gave it force. The Bill creates, as the next section shows, a power to reduce support that no principle in section 4 can prevent. The words of reassurance remain. The certainty itself does not.

The machinery: a power to cut below assessed need Items 60 and 66 change the scheme’s purpose and its principles. Section 34A gives the Minister the power to act on them.

Section 34A allows the Minister, by legislative instrument, to reduce the funding for a group of supports by a set percentage. The reduction is not decided for any individual. It is set centrally, by the Minister, and applied across whichever plans the determination specifies. The Explanatory Memorandum confirms that a determination can be applied to plans chosen by reference to classes of participants — “identified with reference to characteristics such as a participant’s circumstances or the nature of supports that they receive.” So this is not only a power to reduce a group of supports across the whole scheme. It is a power to reduce the support of a defined group of people, chosen by their characteristics, by an instrument that names no individual and assesses no individual need.

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The Explanatory Memorandum is candid about the consequence: “funding for some NDIS supports may be less than the actual cost of providing or acquiring the support, while still being reasonable and necessary.” The Bill spells it out, in section 34A(5): the determination has effect even where the funding for a reasonable and necessary support, or for all of a person’s reasonable and necessary supports taken together, is less than what those supports cost. An identified, assessed and recorded support keeps its status as reasonable and necessary — and is funded below what it costs. The need is acknowledged. The funding is withheld.

And the supports this power can reach are not discretionary extras. The Explanatory Memorandum’s own list of the groups of supports that may be reduced includes Assistance with Daily Living — the support a person relies on to be fed, washed, medicated and safe. For my son, that support is the difference between living in his own home and losing the independence it has taken forty years to build. A power to reduce it below its assessed cost is a power to reach into the part of a person’s life where there is nothing left to cut but their safety and their independence.

This is not a new question. The Federal Court has already considered whether a support found to be reasonable and necessary can be funded only in part. In 2017, in McGarrigle v National Disability Insurance Agency, Justice Mortimer held that it cannot: the Agency could not fund only 75 per cent of a support it accepted the participant needed. A reasonable and necessary support, the Court held, must be funded in full. The Court expressly left open whether financial sustainability could ever justify reducing such a support, saying that question should await an appropriate case. This Bill does not wait for that case. Section 34A authorises exactly that partial funding, and the Government’s own worked example in the Explanatory Memorandum reduces a participant’s reasonable-and-necessary budget from $35,000 to $26,250 — 75 per cent of the assessed amount. The figure the Federal Court struck down in 2017 is the figure the Government now uses to illustrate the new power. The Bill resolves by legislation, against participants, the very question the Court declined to decide.

The most troubling feature of section 34A is that there is no way to challenge it. You can appeal a decision. But the Government does not call this a decision. The determination “does not have the effect of altering the text of a plan” (section 34A(4)), and the Explanatory Memorandum describes the reduction as “self-executing” — an outcome reached “through the operation of law” that “does not involve an administrative decision being made.” So there is no decision to point to, and therefore nothing to appeal. And when the plan is automatically renewed, the reduction carries into the new plan — a renewal that the new section 50A states “does not involve the making of any reviewable decision” either. The support is reduced below what a person has been assessed to need; there is no decision to appeal when it happens, and none when it renews. A person can lose the support they have been found to need, and have nowhere to go.

Section 34A(3) requires the Minister to “consider the safety of participants,” and the Explanatory Memorandum accepts this means weighing whether a reduction “could place participants at risk of neglect, crisis, or loss of essential functioning.” But the duty is only to consider, not to refrain — and it speaks of participants in general. A reduction the Minister judges safe enough across the whole population can still be catastrophic for the individual whose survival depends on the very support being reduced. A general regard for safety is not a safeguard for the particular person the cut lands on.

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The promise, and what the numbers show The Government defends this Bill as a measure to protect the scheme for people with permanent and significant disability. Its own Impact Analysis undercuts that defence. The actuarial modelling finds that the access and permanence changes — the measures aimed at the “margin” of eligibility — affect “an indeterminable, but likely very few” people. The savings, therefore, do not come from the margin. They come from reducing the budgets of people already in the scheme — including those at the profound and permanent core the Bill claims to protect. This matters not only as a question of fairness, but as a question of law, because the Act’s very first object is to give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities.

The human rights case the Government has not made The Bill is accompanied, as the law requires, by a Statement of Compatibility with Human Rights — the document in which the Government must explain how the Bill accords with Australia’s human rights obligations, including the United Nations Convention on the Rights of Persons with Disabilities. In defending the Bill against that Convention, the Statement of Compatibility concedes the case against it.

The Convention permits a country to take a “retrogressive” measure — a deliberate step backward in rights people already hold — only where the step is reasonable, necessary and proportionate. The Government accepts this is the test. Its Statement of Compatibility acknowledges that some measures “may appear on their face to be retrogressive” — the measures that “limit access to the Scheme or reduce the volume or quantity of supports.” The whole defence of this Bill therefore rests on whether the backward step is proportionate.

The Government grounds its proportionality on a single claim in the Statement of Compatibility: that there is “protection of core supports for those with permanent and significant disability, with support reductions focused primarily on inflated components.” That claim is contradicted by the Government’s own Explanatory Memorandum. The Memorandum’s list of the supports that section 34A may reduce includes the core supports — Assistance with Daily Living, Home and Living — and its worked example reduces a participant’s reasonable-and-necessary budget to 75 per cent of the assessed amount. If core supports were protected, and only inflated components reduced, section 34A would not need to reach Daily Living and Home and Living. It does. The proportionality on which the entire defence rests is disproved by the Government’s own explanation of how the Bill works.

The Statement of Compatibility’s treatment of Article 19 of the Convention is more troubling still. Article 19 is the right to live independently and be included in the community — with the in-home and community supports necessary to prevent isolation. It is the right that keeps a person in their own home rather than an institution. The Statement of Compatibility names this right, and then defends it only by pointing to measures that improve the regulation of providers. It does not address, anywhere, how a power to reduce a person’s home and living supports below their assessed cost can be consistent with the right to live in the community. The right most directly threatened by this Bill is the one the Statement of Compatibility leaves unanswered.

There is a further reversal, quieter but no less serious. The Convention rests on a single founding idea: that people with disability are not objects to be assessed and managed, but

Submission 2568

people who know their own lives and must be heard about them. The principle has a catch-cry the disability community has marched behind for decades — “nothing about us without us” — and it is written into the Convention itself. The Minister himself invoked it. Reforms “that go to the nature of the scheme,” he said, should always be framed by that commitment, and he distinguished the immediate spending controls he sought now from the “deeper reform” to be developed “with the community itself” over coming months. That is the right principle, and the right distinction. But this Bill does not honour it: the changes that most go to the nature of the scheme — the rewritten objects, the repealed planning principles, the power to reduce support below assessed need — are in this Bill, not in the deferred reform, and the community was given fifteen days to respond. The Minister’s own test is failed by his own Bill. And in the same vein, new subsections 34(1E) and (1F) rank a participant’s own demonstrated experience of what works for them below published, generalisable research, and allow the Agency to refuse a support for want of such research even where the person’s own experience clearly shows it works. It trusts the study of a life over the living of it.

The Disability Royal Commission, which the Government cites as informing this Bill, found that choice and control is a safeguard against abuse and neglect. This Bill repeals the principles that gave choice and control its force. A Bill cannot claim the authority of a Royal Commission while removing the protections that Commission found people need. The Act’s very first object — paragraph 3(1)(a), which this Bill does not repeal — is to give effect to Australia’s obligations under the Convention. The Bill leaves that commitment standing in the Act, while doing, in its operative provisions, the things the Convention exists to prevent. The Government has not made the human rights case for this Bill. Its own documents make the case against it.

What the public was shown, and what the Bill does When the Minister announced these reforms at the National Press Club on 22 April 2026, he was specific about the spending reductions. The “runaway budget for social and community participation,” he said, was “one such area” — and he was candid that resetting it “will have a material impact on participant plans,” bringing average spending down from about $31,000 to about $26,000 per participant, with the reduction in budgets “larger than that” once utilisation is accounted for. He acknowledged that other drivers of cost would “also be addressed by this

Bill.”

He is right that there are others. But the breadth of “also” is not set by the announcement — it is set by the Bill. Section 34A does not name social and community participation, or any other category. It permits the Minister to reduce “a specified group of supports” — any group — and the Explanatory Memorandum’s own list of those groups is the full set of supports a participant relies on: Core supports including Assistance with Daily Living, Home and Living, Consumables and Transport; every Capacity Building category, including Behaviour Support, Improved Living Arrangements, Choice and Control, and Support Coordination; and Capital supports including

Assistive Technology, Home Modifications, and Specialist Disability Accommodation. Only one

of these — Social, Economic and Community Participation — was named by the Minister as a target. The announcement describes the Government’s present intentions. The Bill grants a general and open-ended power. A participant cannot rely on a Minister’s stated intention when the law before this Parliament permits far more — and when no future minister is bound by what this one has said.

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What I ask the Committee to do There are things in this Bill I support — the fraud and integrity measures in Schedule 2 are sound. What I ask the Committee to do is this:

Protect core supports. Funding for core supports — in particular Assistance with Daily Living and Home and Living — should not be reduced below the amount an individual assessment has found reasonable and necessary, except by a decision made about that person, which they can challenge. Otherwise, people will be left without the support they need for safety, dignity, and a full life.
Retain the integrity of the NDIS Act. Ensure the Act’s first object — to give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities, including the Article 19 right to live in the community — is not overridden by the new financial-sustainability object inserted by Item 60. The rights that run through the Act must continue to guide every decision made under it.
Retain the planning principles. Confirm in the Act that a plan must be built around the individual person, and not be governed by considerations of cost alone. The principles in Section 31 ensure every person is seen and treated as an individual; removing them eliminates individuality, and reduces each participant to a number and a category.
Protect the voiceless. Do not leave participants who cannot speak for themselves, and have no available and capable nominee, without any way to have a genuine change in their needs recognised. The new threshold for unscheduled reassessments in section 48A risks doing exactly that.
Establish the true cost before changes are made. Before any power to reduce supports across groups of participants is used, the Government should quantify the full cross-system cost of those reductions — to health, education, child protection, and residential or aged care — and the risk the Government’s own Impact Analysis identifies of people returning to the scheme “at a higher cost.”
Split the Bill, as the Minister’s own distinction invites. The immediate integrity, fraud and payment measures that are complete and ready should proceed now. But the provisions going to the nature of the scheme — the rewritten objects, the repealed principles, the power to reduce support — together with the deeper reforms the Minister has himself flagged for consultation (the commissioning of support coordination and supported independent living, the design of the Inclusive Communities Fund, and the new eligibility rules) should be developed with the community, as he has promised, rather than passed now.

Taken together, these asks hold the Bill to a single principle: that no person with permanent and significant disability should have support they have been assessed to reasonably and necessarily need reduced below its cost, without an individual decision made on their own circumstances and a right to have that decision reviewed. I am not asking the Bill to do something other than what its title promises. I am asking it to do what its title promises — to secure the NDIS — without dismantling the thing it secures.

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A closing word The Government faces a real dilemma, and I do not pretend otherwise. The scheme costs more than was forecast. Its growth troubles the people who depend on it as much as it troubles Treasury, because a scheme seen as unsustainable is a scheme whose support can be withdrawn. So the question the Government confronts is genuine: how do you protect the NDIS for the future?

The question I am asking you to consider is this: how do we make the NDIS sustainable without destroying what it is for? I do not claim to have the whole answer — but I can see, from the Government’s own documents, that this Bill has not asked that question. It did not find a way to be sustainable without reducing the support of the people it was built for — the people with permanent and significant disability, whose plans are not padding to be trimmed but the scaffolding of a life. It reduced their support because that is where the money is. The waste was in the market and at the margin. The savings are taken from the people at the centre of the scheme — the ones it says, on its very first page, it exists to protect.

And in taking them, the Bill reaches past the money and into the spirit of the Act. It writes the budget into the objects. It repeals the principles that required a plan to be built around a person. It ranks the lived experience of people with disability and their families last. The Minister, describing what he would rebuild, reached for older words — “programs,” supports delivered to people rather than directed by them. But those are the words of the world the NDIS was built to end: a world in which people with disability did not direct their lives but had them programmed, in settings and routines decided for them. A support worker who has known my son for years asked me a question this week I could not answer: if support is cut below what people need to live in their own homes, where do they go? We spent decades closing the places that were the answer to that question. This Bill does not name them. But by reducing what holds people in their own homes, it quietly reopens the road back to them.

This is not an abstract risk. When support is reduced below what a person needs, the cost does not disappear — it takes a human form. The independent review into the death of Ann-Marie Smith, an NDIS participant, found that the most vulnerable cannot safeguard themselves, and must never be left to. This Bill leaves them to it. Isolation, congregation, incarceration — and, for some, death. These are the costs this Bill has never counted. They are measured in lives.

So I want to ask the questions underneath the budget ones. Would we go back? Would we decide, as a society, that people with disability can be returned to the margins of everyday life — that the place they have only recently been given can be taken back? Are they to be counted as disposable, because a budget says so? These are not rhetorical questions. This Bill gives the power to answer them quietly — one group of supports, one class of people, at a time.

The capacity to make this scheme both sustainable and humane already exists, in the very people this Bill treats as a cost: the people with disability who, alongside their families and a generation of advocates, built the NDIS in the first place. They did not sit back waiting to be given it. They fought for it, for years, and won. They are not a burden on this country. They are some of its most determined citizens — people with gifts, ideas, energy, and hard-won knowledge of what it takes to create a good life. They know what works, and what it truly costs, because they live it. That is the knowledge a sustainable scheme would be built on, and the knowledge this Bill has never asked for. That is the resource this Bill overlooks.

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I would welcome the opportunity to speak to this submission — on my own behalf, and on behalf of those who cannot.