National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2397
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: A family carer of an NDIS participant Date: 31 May 2026
Executive Summary
This submission is made by a family carer whose mother has been a profoundly disabled NDIS participant for five years, following a subarachnoid haemorrhage (haemorrhagic stroke). It is submitted with direct, lived experience of how the existing NDIS framework can fail participants catastrophically — and with deep concern that the proposed Bill will entrench, expand, and insulate those failures from challenge.
My mother’s funding has been cut by 80% on two separate occasions, without stated reasons or evidence. A successful external review (AAT agreement) did not prevent an identical subsequent cut. She has been without the supports she needs to maintain basic safety and daily life for almost a year while we pursue external review against a team of NDIA-retained lawyers. She had 36 hours of support per day funded. After the cuts, she received 7. Our family — who already provided substantial support alongside her NDIS plan — now provides an extra 29 hours of unpaid care every single day to prevent her from coming to harm. Her husband is dying of advanced stomach cancer. Her daughters, who have taken on the bulk of substitute care, are themselves injured and unwell, and need to work to survive.
The NDIS can currently cut funding contrary to legislation and its own guidelines, with immediate effect and no interim supports. Families are left to mount complex legal challenges — against government-funded lawyers — without the supports they need to stay alive. This is not a bureaucratic inconvenience. It is a life and safety crisis. This submission argues that the Bill makes that crisis worse.
This submission does not oppose reform of the NDIS. The scheme does need stronger safeguards, greater consistency, and better protection against fraud. However, the reforms proposed in this Bill systematically weaken protections for participants, reduce the reviewability of decisions, shift the legal test for ‘reasonable and necessary’ away from individual need toward scheme financial sustainability, and introduce new mechanisms by which the NDIA can reduce or remove supports with even less accountability than currently exists.
People will die as a result of these changes. Informal carers — family members and loved ones who are already pushed beyond their capacity — will be further stripped of their own lives, health, and futures to fill the gaps. This submission addresses the specific provisions of the Bill most likely to cause these harms, and argues that genuine safety reform requires the opposite of what is proposed.
- Background: The Reality of Current NDIS Administration
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2397
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
My mother sustained a subarachnoid haemorrhage, leaving her profoundly and permanently disabled. She requires around-the-clock care and support for personal care, mobility, communication, and safety. She has severe aphasia — she cannot speak reliably, and her ability to communicate in writing or via alternative means is also significantly impaired. She has been an NDIS participant for five years.
Her funded supports were set at 36 hours per day, reflecting the extraordinary level of care her condition requires. Her funding has since been cut by approximately 80% on two separate occasions, reducing funded support to 7 hours per day, without adequate reasons being provided and without evidence that her support needs had diminished. The first cut was successfully challenged through the Administrative Appeals Tribunal. The agreement reached at that review did not prevent an identical second cut — demonstrating that the current review system provides no durable protection against repeated unlawful decisions.
She has now been without the supports assessed as necessary for her safety for close to a year, while our family is engaged in a protracted external review process against the NDIA and its team of retained legal professionals. During this time:
• Our family already provided substantial support alongside her NDIS plan. When her funded hours were cut from 36 to 7 per day, we absorbed an extra 29 hours of unpaid care every day to prevent her from coming to harm • Her husband is dying of advanced stomach cancer • Her daughters — who have taken on the bulk of substitute care — are themselves injured and unwell and are struggling to maintain paid employment and their own health • My mother has experienced documented physical and psychological harm as a direct result of the funding cuts and the resulting loss of support and safety • There are no interim supports available while the review is pending. Supports cease immediately upon a funding cut, regardless of whether that cut is lawful • My mother has severe aphasia. She cannot reliably speak, cannot initiate contact with the NDIA, and is entirely dependent on family to advocate on her behalf in a system that requires complex, sustained engagement over many months This situation is not an anomaly. It reflects a structural failure: the NDIA can act contrary to its own legislation and guidelines, suffer no immediate consequence, and leave participants and families to navigate a complex legal process — without the supports that make daily life possible — while a government agency with unlimited resources defends the decision.
Every institution and agency will, at some point, make mistakes. The question is whether the system contains adequate mechanisms to protect people when that happens. At present, it does not. The Bill does not address this failure. In almost every relevant respect, it makes it worse.
- The Bill Weakens, Not Strengthens, Participant Safety
2.1 Removing the Individualised Basis for ‘Reasonable and Necessary’
The Bill makes fundamental changes to how ‘reasonable and necessary’ supports are understood, repealing Division 1 of Part 2 of Chapter 3 of the NDIS Act (including section 31) and amending sections 3, 4, 17A, while introducing new section 17B. The reference to ‘reasonable and necessary supports’ in section 3(1)(d) is replaced with ‘NDIS supports…consistent with the financial sustainability of the Scheme.’
New section 17B requires the CEO to prioritise scheme sustainability in planning decisions, including by funding only supports that arise directly from qualifying impairments, recognising
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2397
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
the role of community and informal supports, confirming that participants bear responsibility for day-to-day living costs, and ensuring funding is distributed consistently across participants with similar needs.
While sustainability is a legitimate policy consideration, elevating it above the individual needs and safety of profoundly disabled people fundamentally changes what the NDIS is for. The Government has justified these changes on the basis that courts and tribunals have found in favour of participants, and that this represents an ‘unintended expansion’ of the scheme. We submit that courts applying the law as written, and finding in favour of profoundly disabled people, is not a failure — it is the legal system working as intended. Changing the law to prevent this outcome is a choice that will cause direct harm.
A system that can already lawfully cut a profoundly disabled person’s supports by 80% — leaving her without the care she needs to stay safe — and now directs decision-makers to prioritise scheme finances over her individual needs, is not a safe system. It is a system that places the financial interests of the Commonwealth above the lives of its most vulnerable citizens.
2.2 Reversing the ‘Whole of Person’ Approach (Eastham)
The Bill reverses the Federal Court’s decision in CEO of the NDIA v Eastham [2026] FCA 147, and undoes 2024 amendments that enabled a ‘whole of person’ approach to funding participants with multiple interacting impairments.
Under proposed subsection 34(1)(aa) and the accompanying note, and proposed subsection 32L(6), supports must now arise ‘directly’ from an impairment that meets the access criteria. The Court in Eastham described the earlier, broader approach as ‘commonsense’. The Government’s Explanatory Memorandum describes the outcome as an ‘unintended expansion’ — a characterisation at odds with the understanding of the disability community and with the Government’s own Explanatory Memoranda at the time of the 2024 amendments.
For a participant whose acquired brain injury from a haemorrhagic stroke interacts with secondary physical, cognitive, and psychological impairments, the question of which needs ‘directly’ arise from which impairment is not straightforward. The ‘directly arising’ test will, in practice, be applied to deny supports that are genuinely necessary, based on artificial distinctions between interrelated aspects of complex disability.
2.3 Funding Caps That Override ‘Reasonable and Necessary’ Assessments Proposed section 34A allows the Minister to make a ‘support determination’ — a legislative instrument — that reduces funding for groups of supports by a set percentage across the scheme. These determinations are not reviewable decisions. Participants cannot challenge them through available review mechanisms.
Proposed subsections 34A(4) and (5) make explicit that a determination has effect even where the remaining funding is less than the assessed cost of supports — including where funding is insufficient to cover any individual support in full. The Minister’s only obligation is to ‘have regard to’ participant safety. For participants who depend on those supports to remain alive, this is not a meaningful safeguard.
The Bill also introduces caps under proposed subsections 33(2EA) and (2EB), allowing determinations to set maximum amounts, maximum intensities, and maximum worker-to- participant ratios for particular supports. These caps can apply even where funding falls short of what a participant has been assessed as needing. This directly contradicts the approach confirmed in McGarrigle v NDIA [2017] FCA 308, which held that the NDIS must fully fund a participant’s reasonable and necessary supports.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2397
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
My mother’s funding has already been cut, contrary to law, to a level her family believes poses a direct risk to her life. The Bill would give the Minister explicit legislative authority to make scheme-wide cuts to a similar or greater degree, and remove any avenue for participants to challenge those cuts.
2.4 Value for Money: Removing ‘Equivalent’ and Favouring Lowest Cost
The current framework requires consideration of whether lower cost supports are equivalent in their effect before preferring them on cost grounds. The Bill removes this equivalence requirement.
Proposed subsections 34(1A) to (1C) require decision-makers to consider whether ‘comparable’ supports are available at lower cost, and whether leasing rather than purchasing equipment is more cost-effective. A ‘comparable’ support is not necessarily an ‘equivalent’ one. A decision-maker could find a support comparable and prefer it on cost grounds even where it does not meet the participant’s actual needs to the same degree. For profoundly disabled participants, the difference between a comparable and an equivalent support can be the difference between safety and serious harm.
2.5 Evidence Hierarchy That Disadvantages Complex and Rare Conditions Proposed subsections 34(1E) and (1F) introduce a hierarchy of evidence for determining whether a support is ‘effective and beneficial’. Published, peer-reviewed, and generalisable research is to be considered first. Evidence of outcomes for the specific participant — what has actually worked for them — is ranked below generalised research.
For participants with complex, rare, or poorly-researched conditions — including many survivors of subarachnoid haemorrhage — the peer-reviewed evidence base for specific supports may be limited or absent. The Bill permits a decision-maker to deny a support on the basis of limited general evidence, even in the face of clear individual evidence that the support has been effective and beneficial for that person (proposed subsection 34(1F)). This is not evidence-based decision-making. It is a mechanism to deny supports by privileging the absence of general evidence over the presence of individual evidence.
- The Bill Makes It Harder to Challenge Unlawful Decisions
3.1 Restricting Plan Reassessments Currently, participants can request a reassessment of their plan at any time under section 48. The Bill replaces this with a tightly restricted process under proposed section 48A, which requires participants to demonstrate a ‘significant and ongoing’ change in support needs before a reassessment will be conducted. The NDIA’s time to decide a reassessment request is extended from 21 days to 90 days (proposed subsection 48(3)). Existing safeguards — which applied when the NDIA failed to act within time — are removed.
In my mother’s case, the current reassessment system has already proven inadequate: a successful ART agreement was followed by an identical unlawful cut. These proposed changes will make it harder to request a reassessment, give the NDIA more time to avoid responding, and remove the limited safeguards that currently apply when they fail to do so.
The Explanatory Memorandum confirms that if a participant runs out of funding early — but the NDIA considers their support needs unchanged — a reassessment request will be refused. For profoundly disabled participants relying on funded supports for basic safety, running out of funding is an emergency. The Bill provides no emergency pathway.
3.2 Automatic Plan Renewal Without Review Rights
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Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Proposed section 50A introduces automatic annual renewal of old framework plans. Renewed plans are not reviewable decisions. This means a plan can be renewed for a further 12 months — potentially with ‘alterations’ made by the Minister — without the participant having any avenue to challenge its contents. The Bill also prevents carryover of unspent funding into a renewed plan. For participants whose supports have been unlawfully cut mid- plan, leaving funding unspent through no choice of their own, this penalises them for the consequences of the NDIA’s own unlawful conduct.
3.3 Plan Suspension for ‘Uncontactable’ Participants — A Life Safety Issue Proposed section 40A allows the NDIA to suspend a participant’s plan if, after ‘reasonable attempts’, the participant is ‘not contactable’. After 90 days of suspension, the participant’s status can be revoked under proposed subsection 30(1A), removing them from the scheme entirely and ending all funded supports.
This provision is not safe. The death of David Harris illustrates precisely why. In 2019, Mr Harris — a 55-year-old Western Sydney man with schizophrenia who had progressively lost access to services until the NDIS was the last one remaining — died after his NDIS funding was cancelled when he failed to attend a planning meeting. His body was found in his home in July 2019. He had been dead for at least two months. A coronial inquest was announced following a public campaign by his sister. FOI documents revealed the NDIA had deleted a callback request in the weeks before his death.
The lesson of David Harris’s death — and of the NDIA’s own subsequent internal review, which led to changes in how plans are ended and how ‘vulnerability’ is assessed — is that being uncontactable is frequently a symptom of the very disability or crisis that the NDIS is meant to respond to. Cancelling supports because someone is unreachable is most dangerous precisely when those supports are most needed.
The Bill does not require ‘reasonable attempts’ to contact a participant to be accessible to them, or adapted to their disability. For my mother, who has severe aphasia and cannot reliably speak, initiate calls, or read and respond to written correspondence without assistance, being ‘uncontactable’ is not a choice — it is a direct consequence of her disability. Under the proposed provisions, she could have her plan suspended and ultimately revoked for a condition that is both permanent and directly related to the impairment that qualified her for the scheme in the first place.
The Bill also does not require the NDIA to consider whether plan suspension would pose a risk to the participant’s life or safety before acting. The Explanatory Memorandum suggests such risks ‘should be considered’, but this is not reflected in the legislation. For profoundly disabled participants who rely on NDIS supports for daily survival, plan suspension without a mandatory safety assessment is not an administrative inconvenience — it is a potential death sentence.
If David Harris’s NDIS supports had been sustained until the NDIA could establish — with certainty — that he was safe and not in need of assistance, he might be alive today. The Bill proposes a mechanism that would make the same outcome more likely, not less.
- There Is No Independent Oversight Body That Can Protect Participants When the System Fails
The most fundamental safety failure exposed by my family’s experience is structural: the NDIA can act contrary to law, supports are removed immediately, and there is no mechanism to protect participants while the error is being corrected.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2397
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
When a funding cut occurs — whether lawful or not — supports cease on the day the decision takes effect. There is no right to maintain existing supports pending review. There is no interim funding mechanism. There is no body that can step in to ensure a participant’s safety while the legal process runs its course.
The NDIS Quality and Safeguards Commission has no jurisdiction over the NDIA itself — it regulates providers, not the agency. Politicians cannot intervene in individual NDIS decisions without compromising the scheme’s independence. The Administrative Review Tribunal can change or set aside a decision, but it cannot punish the NDIA for making it, cannot enforce compliance with prior decisions, and cannot require the NDIA to restore supports immediately. The Tribunal is also, under this Bill, being progressively limited in its jurisdiction.
No agency currently has the power to require the NDIA to follow its own legislation in real time. No body can impose a consequence on the NDIA for repeated unlawful cuts to the same participant. No mechanism compels the NDIA to maintain supports while errors are corrected.
Our family’s FOI documents illustrate exactly what this looks like in practice. The then-AAT, now the ART, reached an agreement in our favour on my mother’s funding. The NDIA then made an identical cut. The sequence of events documented in our FOI material is important. First, an internal chat shows a planner asking management for advice on the ART decision. Management’s response was unambiguous: the NDIA upholds tribunal decisions for 12 months, after which the planner can make their own decision. The planner confirmed: ‘OK then I will work on my own decision for this.’ The cut was made on that basis. Subsequently — after the cut had already been implemented — the NDIA’s own executive office queried it, asking what supports had been reduced and why. The executive office set out the NDIA’s own policy: plan delegates are expected to maintain prior tribunal decisions unless at least one of three specific conditions applies with evidence of change — that the participant’s circumstances have changed impacting their support needs, that their goals have changed such that the prior support would no longer help them, or that evidence strongly suggests the support is unreasonable or unnecessary. The executive office’s query implies no such justification had been documented or provided to them. The cut was not reversed.
This sequence is significant. The planner was not acting in ignorance of the tribunal outcome — he was instructed by management to treat it as having a 12-month shelf life. The executive office query came after the fact and led to nothing. This is not a rogue decision or an oversight. It is institutional policy, applied to a profoundly disabled participant, with the executive office’s own concern on record and overridden. Nobody was accountable. No mechanism existed to reverse the decision or impose any consequence on the people who made it.
This is the system the Bill leaves in place — and in several respects, entrenches. Historically, approximately 75–77% of NDIS matters taken to external review have been resolved in the participant’s favour — a rate higher than for any other Commonwealth agency, and a measure of how frequently the NDIA’s decisions are wrong. The Bill does not address this. It reduces the scope of what the Tribunal can do when it finds in a participant’s favour.
Every government agency will, at times, make mistakes. That is not an indictment — it is a fact of institutional life. But a scheme that supports people with profound and complex disability — people who may die without their supports — requires robust mechanisms to protect participants when those mistakes occur. The current system has none. The Bill creates none. It creates, instead, new ways for funding to be cut, new barriers to challenging those cuts, and new provisions that will be applied against participants who cannot engage with the process because of the very disabilities the scheme is meant to support.
There is no independent oversight body with the power to step in, freeze a funding cut, and protect a participant’s safety while a dispute is resolved. There is no consequence for the NDIA when it acts contrary to law. There is no enforcement mechanism. These are not gaps in this Bill — they are the
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architecture of a system in which the NDIA operates without meaningful accountability for the consequences of its errors on human lives.
The human cost of this gap is already visible in our family’s experience, and in the deaths of David Harris and others. The Bill does not reduce that cost. It increases it, by expanding the circumstances in which supports can be cut, reducing the avenues for challenge, and explicitly authorising funding levels below what participants have been assessed as needing.
Informal carers — family members, partners, and friends who step in when the NDIA fails — are not an unlimited resource. They are human beings with their own health, their own lives, their own need for sleep and work and recovery. My family provides 29 extra hours of unpaid care per day. We are injured. We are exhausted. One member of our family is dying. The assumption that informal supports can absorb the consequences of NDIA decisions indefinitely is false, and it is dangerous. When informal carers can no longer sustain what is being asked of them — and many cannot — participants will be at risk of serious harm. Some will die.
- Independent Assessments: An Architecture That Excludes the People It Is Meant to Assess
It is important to be precise about what this Bill does and does not contain on the question of assessments. The Bill itself creates the legal architecture that enables standardised functional capacity assessments — it does not implement them directly. Proposed section 9B defines ‘functional capacity’ for the first time in the NDIS Act, and proposed subsection 9B(2) empowers the Minister to prescribe through NDIS Rules the criteria, methods, and tools used to measure it. Schedule 4 of the Bill amends the new framework planning provisions, including sections 32K and 32L, to require that support needs be assessed using methods specified in NDIS Rules and that budgets be worked out algorithmically from those assessments. The actual assessment tool — known as the I-CAN (Instrument for Classification and Assessment of Support Needs) — is being introduced through those Rules and new framework planning provisions, rolling out from mid-2026. This Bill provides the legal authority for it to operate and to have binding effect on participants’ funding. The concerns raised in this section are concerns about what the Bill enables and what the legal framework it creates will produce.
The NDIA has not published full technical details of how the I-CAN tool works, and this submission does not claim to know its precise mechanics. What is known — from Senate Estimates testimony, published NDIA documentation, and the Bill’s own provisions — is this: an assessor conducts a structured assessment interview, the results are used to generate an NDIS plan budget through an algorithmic process set out in NDIS Rules, and under the new framework NDIA staff cannot exercise individual discretion to vary the output. As the NDIA’s own executive confirmed at Senate Estimates, the process does not produce a recommendation for a planner to consider — it produces the actual budget. The only option if the assessment is wrong is to conduct a new one.
There is also no requirement under the new framework to consider independent medical evidence from treating practitioners. Reports from specialists, occupational therapists, speech pathologists, neuropsychologists, and others with direct clinical knowledge of a participant are not required to be taken into account under proposed subsection 32L(4), which specifies what the assessment must and must not have regard to, with the detail to be set out in NDIS Rules yet to be made.
The deeper problem — and one that is firmly grounded in the Bill’s own text — is the move away from individual assessment and toward consistency across participants with similar characteristics. Proposed subsection 9B(1) defines functional capacity as a person’s
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Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
ability to undertake an activity ‘in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances.’ Proposed section 17B(4) directs that ‘the distribution of scheme funding, across participants as a whole, should be equitable, having regard to similarities in needs and circumstances.’ The explicit legislative goal, as set out in the Bill, is consistency across participants who look similar on the assessment criteria.
The problem is that two participants can look identical on a standardised functional capacity measure while having profoundly different lives, needs, and circumstances. Consider stroke survivors: a subarachnoid haemorrhage can leave one person with no lasting functional impairment and another in 24-hour care for the rest of their life. The same diagnosis, potentially similar scores on a standardised assessment, completely different support needs. The NDIS was founded on the principle that disability support must be individualised — that what matters is the person in front of you, not the average across a category. The Bill’s definition of functional capacity, which strips out personal and environmental circumstances, and its new principle directing consistency across participants with ‘similar’ needs, are a structural retreat from that founding principle. They will produce, by design, outcomes that are consistent but wrong for the people at the extremes — who are, almost always, the most severely disabled.
My mother is an example. She has severe aphasia — she cannot speak reliably, cannot initiate or sustain a lengthy conversation, and cannot without substantial support communicate the complexity of her needs to an unfamiliar assessor. A standardised conversation-based assessment process does not accommodate this. The Bill’s definition of functional capacity explicitly asks assessors to set aside the personal and environmental circumstances that make my mother’s situation what it is — the aphasia, the family’s capacity, the absence of other supports. What remains after those circumstances are stripped away is not an accurate picture of what she needs. It is an abstraction that will underestimate her needs and generate a funding level that does not reflect them.
Aphasia is not unusual among stroke survivors. Acquired brain injury, dementia, intellectual disability, severe anxiety, and many other qualifying conditions similarly affect a participant’s ability to engage with a structured assessment in the way the new framework assumes. The framework is being designed around participants who can communicate their needs fluently. For those who cannot, the assessment will be inaccurate — and the Bill’s own provisions will make those inaccuracies harder to challenge.
The Bill also limits what can happen when an assessment is wrong. Schedule 4 of this Bill, read with the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Act 2024, establishes the new framework planning structure under which the Administrative Review Tribunal — which currently has power to directly substitute its own decision on a participant’s plan — will be constrained in its ability to change plan funding amounts produced through the new assessment process. The Tribunal will be able to order a new support needs assessment, but not to substitute its own funding figure. Historically, approximately 75–77% of NDIS matters taken to external review have been resolved in the participant’s favour. If the assessment process produces a wrong result for my mother — which, given her aphasia and the complexity of her needs, is not merely possible but likely — the only formal remedy will be to send her back through the same process that produced the wrong result.
Our family has direct and documented experience of what this looks like. In my mother’s NDIA internal review, we submitted over 20 documents on three separate occasions and explicitly flagged that they did not appear to be treated as evidence. The outcome document excluded 11 of those documents entirely — they were not mentioned and not listed among documents considered. The excluded documents included the functional capacity assessment, family carer statements, and allied health letters from treating practitioners. Having excluded the functional capacity assessment, the internal review then concluded that there was no evidence before it that my mother’s functional capacity significantly limited her independence. My
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Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
mother cannot roll over in bed. She cannot transfer. She cannot toilet independently. She is functionally non-verbal. The review that produced this conclusion had before it a functional capacity assessment documenting all of this — and excluded it. This is what ‘no requirement to consider independent medical evidence’ looks like when applied to a real person. The new framework does not create this problem. It enshrines it.
The NDIS was built on the recognition that disability is individual — that two people with the same diagnosis can have entirely different lives and needs. The Bill’s definition of functional capacity, which explicitly excludes personal and environmental circumstances, and its new principle directing consistency across participants with similar characteristics, are a legislative retreat from that recognition. They will produce consistent results. For profoundly disabled people at the extremes of need, consistent results are consistently wrong.
My mother has already lost substantial supports despite no evidence of changed needs, contrary to her own medical evidence, and without adequate explanation. The new assessment framework would entrench the conditions that made this possible, remove the professional discretion that might otherwise catch errors, limit the Tribunal’s power to fix them, and ground the entire process in a legal definition of functional capacity that is explicitly designed to set aside the individual circumstances that make her situation what it is.
- Shifting the Burden to Informal Carers: Reckless Policy With Foreseeable, Irreversible Harm
The Bill does not explicitly state that informal carers must do more. It does not need to. The combined effect of its provisions — reduced funding, restricted reassessments, support determinations that can cut scheme-wide below assessed need, a ‘more appropriate system’ test that can be used to deny any funded support, and principles directing decision-makers to preserve and sustain informal supports rather than replace them with funded ones — is that the gap between what participants need and what the NDIS funds will grow. That gap will be filled, where it is filled at all, by family members, partners, and unpaid carers.
This is not a theoretical risk. It is already happening. Our family already provided substantial support alongside my mother’s NDIS plan — this was always the case and was always understood as part of how she would be cared for. When her funded hours were cut from 36 to 7 per day, we did not have the option of not absorbing the difference. The alternative was that she came to harm. So we absorbed it. We now provide an extra 29 hours of unpaid care every day, on top of everything we were already doing.
What makes our situation different from a case of administrative oversight is this: the NDIA knew. Documents obtained under Freedom of Information reveal that in the process leading to the funding cut, the NDIA’s own internal records noted that family members were already providing an unsustainable level of care. That phrase — unsustainable — appears in their documentation. In the next paragraph, they cut the formal support hours by 29 per day.
They also opened a Participant Critical Incident Report, recording my mother’s suicidal ideation and the injuries sustained by her informal carers as a critical incident requiring escalation. That report was closed with the notation that family would continue to provide care. No one from the NDIA contacted us to ask whether we could. No one checked. The same incident that was serious enough to open a critical incident report and trigger a media alert escalation — the NDIA’s concern, it appears, was the reputational risk — was not serious enough to prompt a phone call to the people who were supposed to be providing the care.
I want to be specific about what ‘unsustainable’ looks like in practice, because the NDIA used that word and then acted as though it meant nothing. My sister and I carry the bulk of my mother’s care. Between us, we have had five wrist surgeries. We use our hands to provide
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personal care, transfers, and support for a profoundly disabled person, around the clock, every day. I need hip surgery. I cannot have it, because there is no one else. We both live with chronic sleep deprivation, carer burnout, and significant mental health impacts that are themselves now requiring treatment. My mother’s husband — her partner of decades — is dying of advanced stomach cancer. This is what the NDIA’s records describe as a situation in which ‘family will continue to provide care.’
When we submitted independent medical evidence documenting all of this — reports from treating practitioners setting out in clinical terms what the care burden was doing to our bodies and our lives — the NDIA did not address it in their decision. It was not mentioned. It was not weighed. It did not factor into the outcome at all. The decision-making process behaved as though the evidence had not been submitted. The Bill does not change this. Proposed subsections 34(1G) to (1K) entrench it, by directing decision-makers to assume informal supports are available and to prefer them over funded supports unless their unavailability can be demonstrated. We demonstrated it. It made no difference.
Informal carers are not an abstraction. They are human beings with finite physical capacity, their own health needs, their own need for sleep, employment, and lives. They are frequently women. They are frequently also managing their own injuries, disabilities, or other caring responsibilities. The assumption that they can absorb the consequences of NDIA funding decisions indefinitely — without contact, without assessment, without support of their own — is not just incorrect. It is negligent. When informal carers reach their limit, the participant is at risk. The carer is at risk. And there is no system in place to catch either of them.
The human cost of this is already visible in the deaths of people like David Harris — a man with schizophrenia who died after his NDIS was cancelled when he missed a planning meeting, and who was found dead two months later having had no contact with anyone in the interim. Our situation is different in its details but identical in its logic: the NDIA identified a critical safety situation, recorded it formally, and then resolved it on paper by assuming that people who had already been documented as unsustainable would continue. They escalated for media. They did not escalate for safety.
The NDIA’s own records show they knew informal carers were at an unsustainable limit. They cut formal supports anyway. They opened a critical incident report about suicidal ideation and carer injury. They closed it by assuming the carers would continue — without asking them. They raised a media alert. This is not an accident or an oversight. It is a pattern of decision- making in which the financial cost of funding is weighed carefully, and the human cost of not funding is not weighed at all. The Bill formalises that pattern in law.
Reckless is the right word. The harm is not only foreseeable — in our case, it was foreseen, documented, and then caused anyway. The Bill does not create any accountability for this. It expands the circumstances in which it will happen to more people.
- Specific Provisions of Concern
The Committee is urged to scrutinise the following provisions closely:
• Proposed section 17B — Elevates scheme financial sustainability above individual participant need as a guiding principle • Proposed section 25A — Requires participants to undergo ‘all appropriate treatment’ before accessing the scheme, with no exemption for those who cannot access treatment for financial or geographic reasons
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2397
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
• Proposed section 25B — Excludes people from the scheme if their impairment arises from a motor vehicle or workplace accident, or if the Minister determines another support system is available • Proposed section 34A — Allows the Minister to cut funding for groups of supports by legislative instrument, with no right of review and explicit authorisation to fund below the assessed cost of participant supports • Proposed subsections 33(2EA) and (2EB) — Allows the Minister to cap intensity, amount, and worker ratios for supports, potentially below assessed need • Proposed subsection 34(1)(aa) and note; proposed subsection 32L(6) — Replaces ‘arising from’ with ‘arising directly from’, reversing the whole-of- person approach confirmed in Eastham • Proposed subsections 34(1A)–(1C) — Removes the equivalence requirement from value-for-money assessments, directing preference toward lower- cost supports regardless of adequacy • Proposed subsections 34(1E) and (1F) — Creates an evidence hierarchy that can be used to deny supports to participants with complex or poorly-researched conditions, on the basis of absent general evidence • Proposed section 48A — Restricts reassessment to cases involving ‘significant and ongoing’ change, with no emergency pathway for participants who run out of funding • Proposed section 50A — Introduces automatic, non-reviewable plan renewal with potential ministerial alterations and no ability to carry over unspent funding • Proposed subsection 30(1A) and section 40A — Allows plan suspension and participant revocation for ‘uncontactable’ participants, without accessibility- compliant contact attempts, without safety assessment, and without learning from the death of David Harris • Schedule 5, item 1 — Grants the Minister power to make transitional rules with the force of law for 12 months post-passage, without Parliamentary approval — a broad Henry VIII clause that could be used to make further substantial changes to the scheme
- What Genuine Safety Reform Would Look Like
The Committee is urged to recommend amendments or additional provisions that would constitute genuine safety reform. These should include:
• Interim supports pending review: Participants whose funding is cut should have a right to maintain existing funded supports while a review is pending, unless the NDIA can demonstrate an urgent safety reason. Supports should not cease until a review is concluded or the participant has agreed to the change. • Reasons and evidence for funding cuts before they take effect: The NDIA should be required to provide detailed written reasons and supporting evidence for any reduction in a participant’s funding, prior to that reduction taking effect, with a meaningful opportunity to respond. • Protection from repeat unlawful cuts: Where a review has found a funding cut unlawful, the NDIA should be prohibited from making an identical or substantially similar cut without presenting new evidence demonstrating a change in circumstances. • An independent oversight body with real powers: An independent body — not the provider-focused Quality and Safeguards Commission, and not the Tribunal — should have the power to receive complaints about NDIA decision-making, require
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2397
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
immediate interim protective action, and impose consequences for repeated non- compliance with the law. • Accessible contact requirements before plan suspension: Before suspending a plan under proposed section 40A, the NDIA should be required to have attempted contact in formats accessible to the participant, to have considered whether the participant’s disability may affect their ability to respond, and to have conducted a formal safety assessment. The NDIA should be prohibited from suspending a plan where doing so would pose a risk to the participant’s life or safety. • Equivalence restored to value-for-money assessments: Lower cost supports should only be preferred where they are equivalent in their effect for the individual participant. • Reviewability of all funding decisions: Support determinations under proposed section 34A and automatic renewals under proposed section 50A should be subject to merits review. • Limits on Henry VIII powers: The transitional rules power in Schedule 5 should be subject to Parliamentary disallowance and explicit limitations preventing changes to access criteria, support categories, or review rights.
- Conclusion
My family has experienced firsthand what it looks like when the NDIS fails a profoundly disabled person and those who care for her. We have watched my mother — who cannot speak reliably, who cannot initiate contact with an agency, who depends entirely on others to advocate for her safety — have her funded supports cut to a fraction of what she needs, while her family absorbs the consequences of a system error that has gone unresolved for almost a year.
We provide 29 extra hours of unpaid care every day. We are exhausted. We are unwell. A member of our family is dying. We are doing this because the alternative is that my mother comes to harm, or dies. We are not unique. Families across Australia are doing the same — absorbing, with their own bodies and lives, the consequences of NDIA decisions that have no immediate remedy. The Bill does not acknowledge this reality. It deepens it.
We support an NDIS that is financially sustainable, consistently administered, and protected against fraud and waste. None of those goals require the changes proposed in this Bill. Sustainability does not require removing participants’ right to challenge funding cuts. Consistency does not require insulating the NDIA’s decisions from review. Protecting against fraud does not require making it easier to cut the supports of profoundly disabled people without consequence.
People will die as a result of this Bill. Informal carers will have their lives and health destroyed filling the gaps it creates. The NDIS needs reform that protects participants from the NDIA’s own errors — not reform that removes the mechanisms by which those errors can be corrected. The Committee is urged to reject or substantially amend the provisions identified in this submission, and to recommend immediate, genuine safety measures for participants whose supports are under challenge.
We request that this submission be made publicly available.
31 May 2026
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