National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1112
Submission to the Senate Community Affairs Legislation Committee National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Personal Submission — May 2026
About the Submitter I am a current NDIS participant who joined the Scheme in 2020. I have a rare, progressive neuromuscular disorder arising from a genetic mutation in muscle contracting mechanism. Because the condition affects so few people worldwide, the clinical trajectory is largely unknown. I use a wheelchair and require assistance with many daily tasks as a direct consequence of my disability.
I hold two postgraduate degrees and have been continuously employed in competitive, mainstream positions throughout my working life. I am a research scientist with medical and economic background, which informs my analysis of this Bill. I raise these details not to suggest my needs are more worthy than others’, but because I want the Committee to understand that even well-resourced, highly educated, and employed participants with strong family support face serious risks under this legislation. The impact on those without these privileges will be considerably worse.
I note the very short timeframe allowed for public submissions — just 15 days from introduction of a 109-page Bill on 14 May 2026 to the closing date of 29 May 2026. This submission has been prepared alongside work, family commitments, essential appointments and dealing with daily impacts of my disability and functional limitations. The compressed consultation window itself raises serious concerns about the adequacy of the democratic process, a point shared by Community Mental Health Australia, which has noted that “a compressed inquiry is not the same as genuine consultation.1”
Summary Position I support genuine efforts to address fraud in the NDIS and to ensure the Scheme is administered efficiently. As a lifelong tax payer, I am all for spending my taxes on supporting people with disability and on health and education.
However, the bulk of this Bill is not directed at fraud or administrative waste. Instead, it introduces sweeping structural changes that shift the NDIS away from its founding design as a rights-based, needs-driven insurance scheme toward a rationed, budget- capped model. The $37.8 billion in projected savings announced in the 2026–27
1 Community Mental Health Australia (2026, May). Concerning NDIS Senate Inquiry Pace. CMHA. https://cmha.org.au/concerning-ndis-senate-inquiry-pace/
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1112
Budget2 will not be absorbed without consequence: the costs will shift to participants, their families, state hospital systems, Centrelink, the tax system and the broader community.
Up to 300,0003 people may exit or be denied access to the Scheme by 2029–30, for participant numbers to be kept at 600,000. No credible alternative support system exists for these people. The Thriving Kids program is limited to children under nine with autism or developmental delay and will not be fully implemented until 2028 at the earliest. For adults with progressive, degenerative, or rare conditions, there is simply nothing to replace the NDIS. This was the case I found myself in 2018 and 2019 when I was seeking support. Very little existed outside of the NDIS and when it did, there was a long wait list and people are booted out after a short while, to give others a chance. There is no evidence to suggest the situation is any different now.
I urge the Committee to recommend that this Bill not be passed in its current form. I address six specific concerns below.
Issue 1: Removal of ‘Reasonable and Necessary Supports’ as the Funding Standard Bill Reference: Schedule 1, Part 6, s.60(3)(1)(d) The replacement of ‘reasonable and necessary supports’ with ‘NDIS supports’ determined by budget considerations represents a fundamental shift in the legal basis of the Scheme4. The original standard was grounded in individual need and rights. The proposed standard is grounded in cost.
Disability is not uniform. My brother carries the same genetic mutation as myself, yet his functional impairments and support needs differ from mine. This heterogeneity is the norm, not the exception. Without a legal requirement for supports to be both reasonable and necessary for each individual, there is no protection against blanket funding decisions that are applied to entire cohorts regardless of individual need.
Without the supports that keep me functional, I would be unable to continue working and contributing to the tax base, volunteering, caring or participating in community life. I worked and studied hard all my life, to be given the same opportunities as others, being a female migrant with a disability. My work means the world to me and it is hard fought and earned.
NDIS supports allow my husband to continue working full time and his yearly taxes alone are multiple of my yearly NDIS funding. If I am removed, this risks his ability to continue working full-time. Removing “reasonable and necessary’’ standards and individualised support and decision making risk forcing employed participants and their carers off the workforce, increasing Centrelink expenditure, and reducing tax
2 Australian Government (2026, May 12). Budget Paper No. 2: Budget Measures 2026–27. Commonwealth of Australia. Available at: budget.gov.au 3 This includes people removed from scheme plus those who would have been eligible to enter the scheme without this bill 4 House of Representatives: National Disability Insurance Scheme Bill 2012, Second Reading Speech, Gillard, Julia (2012) https://pmtranscripts.pmc.gov.au/release/transcript-18932
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1112
revenue, ultimately undermining the fiscal case for reform. It has also been shown that for every dollar invested in the NDIS, it returns $2.255.
Issue 2: Functional Capacity Determined by NDIS Rules, Including the I-CAN Tool Bill Reference: Schedule 1, Part 1 I support functional capacity assessment in principle: it can produce a more accurate and consistent picture of support needs than diagnosis-based criteria alone. My concern is with the absence of any legislative safeguard governing how that assessment is conducted.
The Bill delegates to NDIS Rules the power to determine ‘any matter’ relating to functional assessment. This is an extraordinarily broad delegation. It means the entire assessment framework — including tools such as the I-CAN assessment, which has been flagged for use by non-specialist assessors — can be created, changed, or replaced without parliamentary scrutiny.
My condition is so rare that the vast majority of clinicians — let alone general assessors — will have no knowledge of it. Automated planning tools and standardised funding levels for broad cohorts cannot account for the real-world variability that rare conditions present. As a scientist, I understand how easily standardised tools can produce systematically wrong outcomes when applied to populations that were never part of the validation dataset or are used by non- specialist assessors. Imagine letting anyone with a few hours of training to determine your most basic needs for a year or two.
Issue 3: Removal of Interactions Between Impairments from Eligibility Consideration Bill Reference: Schedule 1, Part 3 The human body does not function in neatly separated systems, independent of each other. Most people with significant disability experience multiple interacting impairments, and it is often difficult to attribute a support need exclusively to one approved impairment rather than another. The proposal to limit eligibility consideration to impairments ‘directly arising’ from an approved disability impairment ignores this reality.
For people with rare disorders, this creates an illogical, impossible barrier to obtaining essential disability supports. Medical and research knowledge of my condition is limited. Requiring a causal attribution that the literature cannot support is not a reasonable evidentiary standard: it is a mechanism for denying legitimate needs by imposing an impossible burden of proof.
5 D’Rosario, M., & Lloyd-Cape, M. (2021, November 3). False Economy: The Economic Benefits of the National Disability Insurance Scheme and the Consequences of Government Cost-Cutting. Per Capita (commissioned by National Disability Services). https://percapita.org.au/our_work/false-economy-the- economic-benefits-of-the-ndis-and-the-consequences-of-government-cost-cutting/
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1112
This provision will disproportionately harm those with complex, rare, or poorly understood conditions — exactly the cohort that a needs-based insurance scheme should be most attentive to.
Issue 4: Restrictions on Unscheduled Plan Reassessments Bill Reference: Schedule 1, Part 2 Three years ago, my condition deteriorated rapidly. For the first year after that decline, I was too unwell to compile the documentation required for a plan reassessment. Once I did submit a request, the NDIA took eight months to review it. The result was eighteen months without adequate support and equipment for basic daily needs — not because I was not entitled to it, but because the system could not process my request in a timely way and the evidence and documentation required is already significant, substantial and time consuming.
The Bill introduces further restrictions on unscheduled reassessments and treats NDIA non-response within 90 days as a refusal. For people with degenerative or episodic conditions, the ability to request reassessment when there is a material change in circumstances is not a luxury — it is a safety mechanism. If 21 days’ time frame leads to 8 months’ of waiting for a decision, what would 90 days’ time frame lead to?
Progressive tightening of these provisions will most harm those who are already least able to navigate a complex administrative system: people experiencing acute deterioration in their functioning.
Issue 5: Cessation of Plan Rollovers Bill Reference: Schedule 1, Part 5 The procurement and delivery of disability support, equipment and home modifications does not occur on administrative timetables. Based on my direct experience:
• A chair I needed for home tasks and work required several months for NDIA approval, then a further seven months to ship from Europe. • My current wheelchair took five months to approve and a further four and a half months before the supplier had stock available. • Bathroom modifications required for safe toilet and shower access took eighteen months from NDIA approval to the provider commencing work, with a further three months for completion.
Ending plan rollovers means that if funds are not spent at plan end, due entirely to provider delays, long waiting lists, supply chain issues, or NDIA processing times, those funds are lost. The participant then faces the entire cycle of approval and procurement again from scratch, potentially waiting another one to two years for equipment or modifications they had already been approved for. The policy punishes participants for delays that are structurally outside their control.
Issue 6: Unchecked Ministerial Power to Reduce Funding Across Cohorts or All Participants
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1112
Bill Reference: Schedule 1, Part 4 This is the provision that concerns me most. The Bill grants the Minister authority to reduce funding for whole categories of supports, for defined cohorts of participants, or across the entire Scheme, without parliamentary scrutiny, and without right of appeal.
The NDIS currently supports approximately 774,000 Australians. Each of those participants has family members, carers, and people who depend on their functioning. A Ministerial determination that reduces community participation funding by a fixed percentage does not affect 774,000 strangers in isolation. It affects their parents, children, partners, siblings, and communities. We are discussing a decision with the potential to materially alter the lives of millions of Australians, made by a single person.
The Minister has cited misuse of social and community participation funding — specifically, support workers reportedly scrolling on their phones during outings — as justification for this power. My experience is the opposite. My social and community participation funding is used for getting to medical and exercise appointments; grocery shopping; attending work and volunteering; and visiting my elderly parents, whom I also assist, because I cannot safely load and unload my own wheelchair without help. I have attended two recreational outing in six years on the Scheme and the NDIS paid for the support worker time, not the cost of the tickets for the outing. The response to some instances of misuse should not be the removal of oversight and provide the Minister with unchecked power to cut funding for all participants.
I also strongly oppose measures that could restrict self-management or mandate use of large registered providers or reduce choice and control. Registration does not guarantee quality, safety, or value. My ability to choose who supports me and to disengage from support workers who are not appropriate is, I believe, what has protected me from exploitation and poor-quality care. Restricting this choice would expose the most vulnerable participants to greater risk, not less.
The current narrative of people with disability being rorters and not deserving of help in the mainstream media and by government, to obtain the social and political license to proceed with this bill is shameful. I have experienced and observed an increase in discrimination of people with disability and migrants and an increase in online hate and negative attitudes as a result of this narrative. This is directly against the government’s work on social cohesion.
Additional Concern: Requirement to Obtain ‘Appropriate Treatment’ as a Condition of Support Bill Reference: Schedule 1, Part 8 While this provision does not directly affect my current situation, it has serious implications for others and I wish to place my concern on the record.
In the eighteen months prior to this submission, I spent approximately $50,000 out of pocket on treatments because I am desperate for any prospect of regaining function. Sadly, nothing helped improved my function. I live in a capital city and still have to travel interstate frequently. The Bill does not account for waiting periods for particular treatments, geographic availability, financial capacity, or individual functional capacity to travel to and receive treatments.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1112
Conditioning NDIS access on completion of ‘appropriate treatment’ will mean people deteriorate further before they can access the Scheme, at which point their support needs and therefore costs will be substantially higher. This is fiscally counterproductive as well as ethically troubling.
The Economic Case Against These Reforms The government frames this Bill as fiscally necessary. The fiscal analysis is incomplete. The $37.8 billion in projected NDIS savings does not account for the costs that will shift elsewhere: to state hospital emergency departments; to Centrelink disability support pensions and carer payments; to state mental health and housing services; and to unpaid family carers who will reduce workforce participation to provide care at home, and to the deaths that will inevitably arise from the cuts.
I have paid taxes for over twenty years without ever accessing Centrelink. If I am among those removed from the Scheme by 2029–30, I will be unable to work. I will require a new wheelchair within the next few years at a cost of approximately $30,000 — a cost I could not self-fund while also meeting the other costs of severe disability. In 2024, I spent the equivalent of three times the market value of a standard second-hand car, simply to purchase a vehicle with an electric ramp (entirely self-funded, no NDIS funds were used). The financial burden of disability is substantial even for a person with a decent income. For those without one, it is impossible. We know many people with disability who are unable to work are not even on disability pension but on job seeker, which is significantly below the Henderson poverty line. They cannot feed and house themselves adequately, let alone buy costly disability equipment or pay for expensive allied health appointments.
Cost shifting from the NDIS to the hospital and primary care system is not fiscal savings — it is fiscal transfer. The Committee should request full whole-of- government cost accounting before recommending this Bill for passage.
Human Rights and Disability Rights Concerns Australia is a signatory to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Several provisions in this Bill appear inconsistent with Australia’s obligations under the CRPD, particularly Article 19 (the right to live independently and be included in the community), Article 26 (habilitation and rehabilitation), and Article 28 (adequate standard of living and social protection).
Unreviewable Ministerial determinations cutting support for people with severe disability, restrictions on the ability to seek reassessment when disability deteriorates, and conditions on accessing support that ignore individual functional and financial circumstances all warrant formal scrutiny against Australia’s human rights obligations. I note the Committee has a role in that scrutiny and I urge it to exercise that role carefully.
Recommendations I respectfully urge the Committee to recommend that: • the Bill not be passed in its current form.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1112
• the ‘reasonable and necessary supports’ standard be retained as the individual needs-based funding threshold. • any functional assessment framework be established by primary legislation, not Ministerial rules, and include specialist input for rare and complex conditions and be conducted by qualified professionals. • the requirement to attribute support needs solely to impairments directly arising from an approved disability be removed. • plan rollovers be retained for delays in accessing support due to long wait lists and the time required for equipment procurement and home modification. • unreviewable Ministerial power to reduce funding for cohorts or all participants be removed from the Bill. • full whole-of-government cost accounting for the proposed $37.8 billion in savings be required before the Bill proceeds, including projected costs to the hospital system, the tax system, Centrelink, state services, and unpaid carers.
Thank you for the opportunity to contribute to this inquiry.
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