National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2357
SUBMISSION
to the
Senate Standing Committee on Community Affairs Legislation Committee
Inquiry into the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: A Parent and Full-Time Carer of Three Children with Complex Disability Support Needs on the NDIS
Date: 31 May 2026
Submission made in a personal capacity based on lived experience as a carer.
Introduction and Standing I am writing to express my profound opposition to significant elements of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. I do so as the parent and full-time carer of three children who are NDIS participants with complex and high support needs, ranging across psychosocial disabilities to Autism. My submission is grounded in the harsh realities my family faces every day and in deep concern for the future of the Scheme that has, until now, been our lifeline.
The Bill proposes sweeping changes to eligibility assessments, planning processes, ministerial powers, and administrative automation. While I acknowledge the need for the NDIS to be sustainable and free from fraud, the approach taken in this legislation risks catastrophic harm to the very people the Scheme exists to support — including my own children.
Particularly alarming is how the Bill alters the assessment of permanence and ongoing eligibility. My children gained access to the NDIS only after satisfying strict criteria: their disabilities are permanent and lifelong, all evidence-based treatments had been thoroughly tried, and there existed a substantial body of supporting clinical evidence. Yet the introduction of the concept of ‘all appropriate treatment’, combined with the new standardised assessment framework, creates a real risk that participants could be removed from the Scheme if a new or emerging treatment is deemed available — even one as unrealistic as a $10 million pill or experimental interventions offered only in China or Germany. It is profoundly concerning that this hard-won, evidence-based access could effectively be replaced or undermined by reliance on the I-CAN (Instrument for Classification and Assessment of Support Needs) tool — developed in partnership with the University of Melbourne, where NDIS Review Chair Professor Bruce Bonyhady is affiliated — and potentially administered through automated or standardised processes by NDIA staff who may lack formal allied health or medical qualifications. This raises grave questions about the clinical validity, fairness, and human oversight of future eligibility and planning decisions affecting the most vulnerable Australians.
Our Lived Experience with the NDIS My three children have profound, permanent, and complex support needs. The NDIS has been essential — in one case, literally life-saving.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2357
One child required an exhausting, protracted fight simply to be accepted onto the Scheme. Since gaining access, the NDIS has delivered critical supports that have kept this child alive. If this child were not on the NDIS, they would be dead. That is not hyperbole; it is the stark reality of our family’s experience. The Scheme provided the difference between survival and tragedy.
Even after acceptance, we have had to endure a lengthy and adversarial battle against the NDIA, which engaged a team of lawyers from Mills Oakley to oppose our requests for adequate supports. This fight began in 2023 when an internal review (s100) of a plan was denied. A subsequent change of circumstances request, supported by extensive clinical evidence, was also denied, as was the further s100 review. During the Administrative Review Tribunal (ART) process, the NDIA’s lawyer informed our lawyer that the Agency ‘could not make a determination’ on recommended supports — despite multiple detailed reports from allied health practitioners clearly setting out the supports required. It was only days before the scheduled hearing that the NDIA finally agreed to fund a number of supports that had been clinically recommended for over three years. Even then, they refused to fund an increase in overnight care, despite consistent recommendations from multiple allied health practitioners. This experience has led me to the devastating conclusion that the NDIA and the Government do not care if participants die. They appear willing to litigate, delay, and deny evidence-based supports until the very last moment, treating the lives and wellbeing of people with disability as expendable in their pursuit of cost control.
Another of my children does not leave the house without NDIS support. This child has no friends, demonstrates very poor self-care, and lives with a constellation of other high needs that demand intensive, skilled, and consistent assistance. Without the NDIS, this child would be completely isolated, unable to engage with the world in any meaningful way, and at serious risk of deterioration. The supports funded by the NDIS are the only bridge to any form of safety, routine, and minimal community connection.
To meet my children’s needs and to fight for adequate supports within an often adversarial system, I have had to give up full-time employment. I have also been forced to delay and extend my studies. The carer role is unrelenting — 24 hours a day, seven days a week — with inadequate respite and constant advocacy demands. The emotional, physical, and financial toll is immense.
These are not optional or discretionary supports. They are fundamental to my children’s survival, dignity, and any prospect of a life with meaning. The NDIS, when it works, delivers on its promise. But the proposed changes threaten to dismantle that promise.
Grave Concerns Regarding the Bill
- Fear of Children Being Kicked Off the Scheme Due to Changes in Assessment The introduction of functional capacity assessments, the move away from diagnosis-based eligibility, the new concept of “all appropriate treatment”, and tighter tests for “reasonable and necessary” supports create an acute and terrifying risk that my children could be removed from the Scheme or have their supports drastically reduced. My children’s disabilities are not mild or transient. They are severe, enduring, and require substantial ongoing intervention. Yet the Bill’s architecture appears designed to make it easier to exit participants or slash budgets, particularly for those with psychosocial disabilities and neurodivergence whose functional capacity may be assessed in narrow or punitive ways.
For the child whose life depends on the NDIS, any reduction or removal of supports is not a policy adjustment — it is a potential death sentence. I live in constant fear that a reassessment, an automated process, or a changed interpretation of “functional capacity” will strip away the supports that keep my child breathing.
- Fear of Plans Being Cut by Ministerial Direction Without Parliamentary Oversight
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2357
The Bill grants the Minister significant powers to reduce funding for specified groups or classes of supports. This represents an extraordinary delegation of power with insufficient parliamentary oversight or accountability. Supports that my children rely upon — for daily living, community participation, capacity building, or home and living — could be arbitrarily reduced or eliminated by executive decision, potentially via legislative instrument rather than full parliamentary debate and scrutiny.
This destroys any certainty for families like mine. How can we plan for the future, maintain stability, or advocate for our children’s long-term needs when core funding categories can be gutted without proper legislative process? This is not “securing the NDIS for future generations”; it is creating a Scheme where participants live in permanent insecurity.
- The Sheer Scale of Changes and Automation is Terrifying — Potentially Far Worse than Robodebt The combination of functional capacity assessments feeding into automated or semi-automated planning and budgeting systems, plan end dates, renewal processes, and expanded administrative automation represents change on a scale that is genuinely terrifying for participants and carers.
Australia has already lived through Robodebt — an automated, unlawful Centrelink debt recovery scheme that caused immense harm to vulnerable people, required a Royal Commission, and exposed catastrophic failures in automated decision-making without adequate safeguards, transparency, or human oversight. The NDIS changes risk repeating those failures, but on a larger scale and affecting people with disability who often have even greater barriers to understanding, challenging, or appealing erroneous decisions.
While the Government states it has learned from Robodebt, the Bill does not appear to embed robust, legislated protections — mandatory human review for significant decisions, full transparency of algorithms and data, accessible appeal rights, and independent oversight. The potential for widespread, systemic errors that devastate families is real and unacceptable.
- Disgust at the Lack of Real Co-Design — Feigned Through NDAs I am disgusted by the manner in which these reforms have been developed. Genuine co-design with the disability community, participants, and carers has been absent or severely compromised. Reports indicate that advocates and stakeholders were required to sign non-disclosure agreements (NDAs) simply to participate in consultation processes. This is not co-design; it is the opposite. It silences voices, prevents proper community input, and allows government to claim “consultation” while denying transparency and shared power.
True co-design requires openness, adequate timeframes, accessible information (including draft legislation), and the ability for those most affected to shape outcomes. Feigning co-design while gagging participants and advocates is an insult to the disability community and destroys trust in the reform process.
- The Fiscal Narrative Does Not Withstand Scrutiny These changes have been presented as a necessary fiscal measure to secure the NDIS for future generations by curbing unsustainable growth and removing ineligible participants. However, media reporting suggests that the substantial projected savings have already been allocated to other portfolios and budget priorities. This raises fundamental questions about the true purpose of the reforms.
If the primary driver is broader budget repair rather than the long-term integrity and sustainability of supports for people with significant and permanent disability, then the Government is asking the most vulnerable Australians — including my children — to bear the cost of fiscal decisions made elsewhere. That is neither just nor sustainable.
- Carer Burnout and the Real Risk That My Children or I Will Die
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2357
The constant stress of caring for three children with such high and complex needs, combined with the need to fight an often unresponsive bureaucracy for basic supports, has caused severe carer burnout. I fear for my own health and life, and I fear for the lives of my children if supports are reduced, plans are cut, or they are pushed off the Scheme.
Carers are not infinite resources. When the system fails to provide adequate, timely, and appropriate supports, it pushes families to breaking point. The Bill’s changes will intensify that pressure dramatically. I should not have to fear that my children or I will die because of policy changes sold as “securing the future”.
Failure to Address — and Direct Contradiction with — the Disability Royal Commission, NDIS Review, and Australia’s UNCRPD Obligations The Bill and associated reforms fail to properly implement, and in key respects actively contradict, major findings and recommendations from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, the Independent NDIS Review (2023), and Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
The Disability Royal Commission emphasised the critical importance of genuine choice and control, supported decision-making, dignity, and the prevention of neglect and isolation through individualised, high-quality supports. It called for meaningful co-design with people with disability and stronger safeguards against power imbalances. The NDIS Review similarly stressed the need to put participants back at the centre, restore trust through greater transparency and consistency, improve the participant experience, and ensure genuine co-design. Australia’s UNCRPD obligations — particularly Articles 3 (autonomy, dignity, full participation and inclusion), 4(3) (close consultation with and active involvement of persons with disabilities in decision-making), and 19 (right to live independently and be included in the community) — require that reforms enhance, rather than diminish, individual autonomy, choice, and community participation.
Instead, this Bill risks entrenching standardised and automated processes that reduce individualised assessment and participant voice; concentrates significant power in the Minister with inadequate parliamentary oversight; relies on co-design processes widely criticised as superficial and conducted under NDAs; and facilitates market consolidation that treats participants as commodities. These directions undermine the very principles of autonomy, dignity, choice and control, and meaningful participation that both the Royal Commission and NDIS Review identified as essential, and that the UNCRPD requires Australia to uphold. Reforms of this magnitude should demonstrably advance — not regress — Australia’s human rights commitments and the hard-won lessons from these major inquiries.
Recommendations I urge the Committee to recommend substantial amendments to the Bill, or to oppose those provisions that place participants at unacceptable risk. Specifically:
- Focus on Provider Fraud and Scheme Integrity, Not Participant Cuts The Bill takes some steps to expand NDIA powers regarding fraud and non-compliance. This is welcome but insufficient. The Government should prioritise robust detection, investigation, and prosecution of fraudulent or non-compliant providers, overcharging, and rorting. Real efficiency and sustainability gains come from cleaning up the supply side of the Scheme, not from stripping life-saving supports from participants with verified high needs. Target the rorts; protect the participants. Protecting a Diverse, Participant-Centred Provider Market — Rejecting Harmful Consolidation and Financialisation Recent commentary in the Australian Financial Review has drawn attention to proposals and market pressures favouring the consolidation of NDIS supports into a small number of very large providers —
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2357
potentially as few as 20 or so — heavily backed by private equity firms and superannuation funds seeking reliable financial returns. This direction is completely counterproductive to the foundational principles of the NDIS. It risks treating participants as revenue-generating commodities rather than as people entitled to dignity, choice, and personalised support. Such consolidation would inevitably wipe out thousands upon thousands of genuinely excellent, community-based, specialist, and small-to-medium NDIS providers who deliver high-quality, flexible, and innovative supports tailored to individual needs. It would drastically limit genuine choice and control for participants and their families. The rationale does not withstand scrutiny from a human rights perspective. It is plain that this push is significantly influenced by vested financial interests rather than the wellbeing and rights of people with disability. Reforms flowing from this Bill and related policy must actively safeguard and promote a diverse, competitive, and participant-directed provider ecosystem, rather than facilitate its financialisation and reduction to a handful of large, profit-driven entities. 2. Invest in NDIA Capability — Get Plans Right the First Time A major source of inefficiency, distress, and cost is poor initial planning, inadequate staff training, and a culture of under-funding that forces participants into reviews and appeals. The Bill and associated reforms should mandate and fund significant investment in recruiting, training, and retaining NDIA staff who possess deep expertise in complex disabilities, including psychosocial disabilities and Autism. The objective must be accurate, adequate, participant-centred plans from the outset. This delivers better outcomes and genuine efficiency. 3. Guarantee Robust Rights to Challenge Automated Decisions Any automation of eligibility, planning, or funding decisions must be accompanied by strong, accessible safeguards: mandatory human review for any decision that could reduce supports or affect eligibility; full written reasons; transparency regarding data, algorithms, and decision rules; and clear, timely, low-barrier appeal pathways (internal and external). The lessons of the Robodebt Royal Commission must be legislated into the NDIS framework, not merely acknowledged in speeches. Participants must never again be subjected to opaque, unchallengeable automated systems that determine their survival and dignity. 4. Preserve and Enhance Choice, Control, and Dignity The foundational principles of the NDIS — choice and control for participants, and recognition of their dignity and agency — must be protected and strengthened, not eroded. Reforms must demonstrably maintain or improve participants’ ability to direct their own supports and lives. Any move toward block funding, standardised budgets, or reduced flexibility must be rigorously justified and subject to genuine co-design. 5. Restore Genuine Co-Design and Adequate Timeframes Future policy development and implementation must involve authentic partnership with people with disability, their families, and carers. This requires transparent processes, reasonable timeframes for consultation and inquiry (the current compressed timeline is inadequate for such consequential legislation), accessible information, and the absence of gag orders such as NDAs for core input. The disability community deserves better than performative consultation. 6. Limit Ministerial Powers and Require Parliamentary Oversight Comparable to Other Portfolios The Bill grants the Minister significant and concerning powers to reduce funding for specified groups or classes of supports, with limited parliamentary oversight. These powers must be strictly limited. Any such ministerial directions or funding reductions should be subject to the same robust parliamentary oversight and accountability mechanisms that apply to equivalent decisions in other portfolios — for example, requiring affirmative parliamentary resolution, full disallowance procedures, or specific legislative amendment rather than broad delegated authority via legislative instrument. Significant changes affecting NDIS participants’ funding, eligibility, or supports should not be able to be made by executive fiat without proper parliamentary scrutiny and debate. This is essential to uphold the rule of law, provide families with certainty, prevent arbitrary or politically driven cuts, and ensure democratic accountability over a Scheme that is vital to the lives of hundreds of thousands of Australians.
Conclusion
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2357
The NDIS has been a lifeline for my family. For one of my children, it has meant the difference between life and death. For another, it provides the only means of leaving the house, maintaining any connection to the world, and receiving support with basic self-care. These proposed changes — driven by assessment shifts, ministerial funding powers, and large-scale automation — risk destroying that lifeline.
I call on the Committee to listen carefully to the voices of participants and carers with lived experience. I urge you to recommend amendments that protect the vulnerable, embed real safeguards against automation failures, target fraud at the provider level, strengthen the NDIA’s front-line capability, and restore genuine co-design. Sustainability achieved by sacrificing the lives, dignity, and futures of people with disability is not sustainability at all — it is abandonment.
The NDIS was built on a promise. This Bill, in its current form, threatens to break that promise for the most vulnerable Australians. My children — and thousands like them — deserve better.
I am willing to provide further information or appear before the Committee if requested.
Yours sincerely,
A Parent and Full-Time Carer of Three Children with Complex Needs on the NDIS
31 May 2026