Submission to the Senate Standing Committee on Community Affairs

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by: On behalf of: (NDIS Participant) Relationship: Mother, primary carer, and NDIS self-manager Location: (Regional New South Wales) Date: 29 May 2026 Contact details provided separately to the committee secretariat.

Executive Summary

This submission is made by , the sole carer and NDIS self-manager for her daughter , aged 28, who has Down syndrome and requires 24-hour care and support. It addresses three provisions of the Bill: the new functional capacity assessment framework (Schedule 1, Part 1); the 50 per cent reduction to social and community participation funding enabled by Ministerial determination (Schedule 1, Part 4); and the Ministerial determination power itself (Schedule 1, Part 4). The submission draws on a formal Occupational Therapy Functional Capacity Assessment completed by in February 2025, which formally assessed ’s current funding as inadequate and unsustainable, and which was never acted upon due to NDIA administrative failure. The submission argues that the proposed cuts will not find savings in excess spending but will dismantle a carefully designed, clinically supported support arrangement; will force the primary carer out of employment; and will transfer the cost from the NDIS to Centrelink, the health system, and the carer personally. Specific amendments are recommended for each provision.

Introduction

This submission addresses three provisions of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026: the new functional capacity assessment framework and its implications for reassessment (Schedule 1, Part 1); the 50 per cent budget reduction to social, civic and community participation supports enabled by Ministerial determination (Schedule 1, Part 4); and the Ministerial determination power itself, which enables that reduction and future cuts to support categories without further parliamentary scrutiny (Schedule 1, Part 4). Each provision is addressed in turn. Personal experience is cited where it directly illustrates the practical operation and consequences of the relevant provision. I draw throughout on the findings of a formal Occupational Therapy Functional Capacity Assessment completed by VIVAbility Bathurst in February 2025.

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I am the mother, sole primary carer, and NDIS self-manager for my daughter, , aged 28, who has Down syndrome. lives with me and her 12- year-old brother at our home in . I am a single parent. There is no other carer. There is no backup. requires 24-hour care and support and cannot be left alone. This is formally assessed and documented.

I want to be transparent about my circumstances, because they are relevant to how this committee should read what follows. I live in a home owned by a family member and do not pay rent or a mortgage. I have professional skills and experience that, in capital city, would provide real employment options. In regional NSW, those same skills compress into a narrow band of competitive remote roles. The growth of remote work has been transformative for me: it is not a lifestyle preference but the primary means by which someone in my geographic and caring situation can access employment at a level that supports a household. I work in a flexible, commission- based remote role because it is the only viable employment structure available to me.

I say this because I am the best-case version of a sole carer in this situation. I have secure housing I am not paying for, professional qualifications that enable remote work, and the administrative capacity to self-manage a complex NDIS plan. These are not things most carers will have. They were hard-won and, in part, the result of circumstances outside my control. When I describe what these proposed cuts would do to our household, I am describing the impact on the most structurally stable version of this family. For carers without secure housing, without skills that translate to remote employment, without the capacity to navigate a self-managed plan, the consequences will arrive faster and cut deeper.

1. Schedule 1, Part 1: Eligibility and the New Functional Capacity Assessment Framework

The provision Schedule 1, Part 1 establishes a new legal framework for determining NDIS access based on substantially reduced functional capacity, introduces a definition of functional capacity, and enables future access decisions to be based on assessment using the I-CAN Support Needs Assessment tool. The Bill removes diagnosis-based access pathways. Down syndrome does not appear on any exemption list under the new framework. The specific methodology for how functional capacity will be measured, how it translates to a funding amount, and how participants can challenge the result will be determined after the Bill passes, by the Minister, through instruments. A Technical Advisory Group has been established to advise on the threshold and assessment process, but its work is not complete.

How this provision operates in practice: the regional assessment reality

 's disability is chromosomal. Down syndrome is caused by an extra copy of

chromosome 21. It is permanent, lifelong, and not amenable to treatment. There is no intervention that changes her underlying functional capacity. The OT assessment completed by VIVAbility Bathurst in February 2025 assigned a Care and Needs Assessment (CANS) score of Level 7, the highest possible score, indicating she

• cannot be left alone and requires 24-hour care and support. Her Lawton-Brody IADL score was 1 out of 8, indicating she requires full assistance with all daily living tasks. Her Barthel Index score was 12 out of 20, confirming high support need across all personal care activities. Her Caregiver Burden Scale score was 60 out of 88, placing me at the higher end of the moderate-to-severe burden category.

These scores will not change at reassessment. Down syndrome does not improve. What will change is the assessment instrument. When ’s plan reaches its reassessment date in August 2027, she will need to be assessed using the I-CAN tool, which did not exist when her current supports were established and which is still being rolled out.

Finding an available occupational therapist in regional NSW for the February 2025 assessment took months. I have been on waitlists for OT, speech pathology and other allied health providers for years. The OT engaged for this assessment was available only because the work was a one-off report rather than ongoing therapy. Ongoing therapy waitlists in our region are effectively closed. The assessment required three separate face-to-face sessions over November 2024, January 2025 and February 2025, with correspondence throughout. The final 18-page report was delivered in February 2025.

The capacity building funding used for this assessment is worth explaining carefully.CB funding in our plan is chronically underspent, not because the needs are not there, but because the allied health providers to deliver it do not exist in sufficient numbers in regional NSW. I have been unable to access funded OT, speech pathology and other therapies for years due to provider scarcity. I have used CB funding flexibly, including for capacity building support workers, to partially address this gap. The assessment consumed a portion of those funds that would otherwise have gone toward therapeutic supports cannot access through the intended channels.

The assessment was never submitted to the NDIA.

The plan review that prompted the assessment had a closing window. By the time the 18-page report was completed, that window had closed. The planner who had requested the assessment was no longer available. I was not assigned a replacement. The process stopped. The clinical document, which formally concluded that ’s current funding is inadequate and unsustainable and recommended supports substantially beyond what her plan provides, was never acted upon. ’s current plan does not reflect its findings. She is being supported under a plan that a qualified occupational therapist assessed as insufficient, and the NDIA’s own administrative failure prevented that evidence from being used.

This is not an isolated failure. It is the normal functioning of the system as it currently exists. The Bill introduces new assessment requirements and new compliance obligations on top of a system that already loses the evidence families produce at significant cost and effort, that already fails to act on clinical findings within plan review windows, and that already leaves carers without assigned planners for extended periods.

Specific concerns regarding Schedule 1, Part 1:

• Down syndrome is chromosomal, permanent, and clinically unambiguous. Requiring full reassessment using a new instrument at every plan review generates compliance cost and administrative burden with no corresponding benefit to scheme integrity. The new framework should include a streamlined pathway for conditions of this kind, where permanence and functional impact are not in dispute.
• The I-CAN tool is not yet fully validated or rolled out. The methodology for translating functional capacity scores into funding amounts is not yet determined. Participants are being asked to accept a legislative framework built around an instrument whose operation is not yet defined.
• In regional NSW, multi-month lead times to secure a qualified assessment provider are normal. The Bill does not address provider supply as a precondition of the new framework. Families in areas like ours will face the same scarcity navigating I-CAN assessments as they face now, with the added complexity of a new instrument and no transition support.
• Unscheduled reassessments under the Bill are only available where there have been significant and ongoing changes to a participant’s functional capacity. For a participant with a stable chromosomal condition whose support needs increase gradually with age, this threshold may prevent timely plan adjustments as care requirements grow more complex.
• The administrative failures that prevent completed assessments from being acted on within plan review windows, including unavailable planners and closed review periods, must be addressed before new compliance requirements are layered on top of them.

2. Schedule 1, Part 4: The 50 Per Cent Reduction to Social and Community Participation Funding

The provision Schedule 1, Part 4 enables the Commonwealth Minister to make determinations to reduce funding for groups of supports. The Government has announced it will use this power to reset participant support budgets for social, civic and community participation by 50 per cent on average from 1 October 2026, with the stated aim of returning average spend to 2023 levels.

How this provision operates in practice: what these hours actually do ’s current plan, running from 14 August 2024 to 14 August 2027, includes $162,886.04 in Assistance with Social, Economic and Community Participation funding, managed flexibly and self-managed by me. The February 2025 OT assessment recommended 1:1 support seven days a week, eight hours per day for social and community participation, to preserve ’s relationship with me, support her engagement in activities that promote her independence and wellbeing, and enable me to meet the needs of both of my children. The same assessment concluded that the current funding is inadequate and the current care arrangements are not sustainable.

Even with the current plan, the funding will not last the full three-year period. I manage this by reducing supports over the Christmas and New Year period when family availability provides some informal coverage. On current spending, the funds will run out approximately two to four months before the plan end date. The plan was set below the level the OT assessed as necessary. I have been rationing from the beginning.

A 50 per cent reduction to this category would remove approximately $81,443 from a plan already assessed as insufficient.

The framing of social and community participation as an enrichment category does not reflect what these hours do in practice. ’s current weekly support schedule is as follows:

• Monday: 1:1 support worker, 9am to 5pm. cleans her room, does her washing, shops for food to cook dinner for the family, and shops for her own personal care items. She cooks dinner. These are not recreational activities. They are the tasks through which experiences herself as a contributing member of her own household.
• Tuesday: Gym followed by drama, 9.30am to 3pm.
• Wednesday: 1:1 support worker, structured similarly to Monday, plus her art studio program through Arts Out West. is an artist whose work has been included in exhibitions. The studio gives her a purpose and a community identity that is entirely her own.
• Thursday: Small group program, 12.30pm to 3pm.
• Friday: Gym, 11.30am to 2.30pm.
• Every second Friday evening: Dinner, a movie, or a party with friends she has chosen. This schedule was built over years, in direct response to a previous model that was calling harm. For many years, her supports followed the standard group activity model: a bus collecting participants, group outings to activities she had not chosen, with people she had not chosen. It was efficient in terms of funding utilisation. is miserable. She became withdrawn and disengaged. The OT report documents that responds well to physical expression through art and exercise, is calmer and happier following those activities, and that her capacity to engage in all aspects of life increases as a result. It explicitly recommends person-centred 1:1 support because her communication difficulties, need for routine, and individual goals are not well served by group-based models.

Self-managing ’s NDIS funds made this possible. It provided the flexibility to design her week around her actual needs. That is not a loophole. It is the NDIS operating as intended.

When is in funded supports, I can work. A 50 per cent reduction to this category would make that effectively impossible. The consequences follow in sequence: my employment goes first; my son’s needs are affected next; my own capacity to function as a carer follows. My Caregiver Burden Scale score of 60 out of 88 reflects the current situation, before any reduction in support.

’s life contracts in parallel. The gym goes. The art studio goes. Monday cooking

goes. Friday dinners with chosen friends go. What remains is the group bus model, because it costs less per hour. That is not a saving. It is a transfer of cost from the NDIS to Centrelink, to the health system, and to me personally. The founding ational of the NDIS, as articulated by the Productivity Commission, was that investment in formal disability supports prevents exactly this outcome: it keeps carers in the workforce, keeps families intact, and prevents the cascade of dependency and crisis that follows when informal support networks fail. This Bill proposes to cut the category most directly linked to that rationale by 50 per cent, in a household where the evidence already documents that current support is inadequate.

I return to the point made in the introduction. I have secure housing I am not paying for. I have skills that translate to remote employment. I am the best-case scenario. If this reduction makes employment impossible for me, the committee should consider what it will do to carers without these foundations.

Specific concerns regarding this provision:

• The 50 per cent reduction should not apply to participants whose current plans are already formally documented by qualified practitioners as inadequate to meet their assessed needs. Applying the reduction to plans already assessed as insufficient does not address excess spending. It deepens an existing shortfall.
• The reduction disproportionately affects participants whose social and community participation funding is the mechanism that enables their carer to remain in employment. The downstream cost to Centrelink and the health system of carer workforce exit has not been accounted for in the Government’s savings projections.
• The group-based alternative supports proposed as a replacement are not clinically appropriate for all participants. For participants like , where 1:1 support is recommended on clinical grounds, a group-based replacement is not a cost-equivalent substitute. It is a different and less effective model of support.

3. Schedule 1, Part 4: Ministerial Determination Power to Reduce Support Categories

The provision Schedule 1, Part 4 grants the Minister power to make determinations to reduce funding for groups of supports by executive instrument, without further legislation, without specified consultation requirements, and without transition protections for participants in active plans.

How this provision operates in practice: mid-plan cuts to self-managed arrangements I self-manage ’s NDIS funds because it is the only way to access appropriate providers in a regional area where registered provider supply is constrained. Self-

Management Planning

Management requires forward planning. I make commitments to providers, schedule supports, and structure my own employment around the hours I have arranged. The current plan runs to August 2027.

The 50 per cent reduction to social and community participation funding will be implemented via this Ministerial determination power from 1 October 2026. ’s plan does not reach its reassessment date until August 2027. The determination will apply mid-plan. The funding I have arranged providers and employment around, which the OT assessed as already inadequate, will be reduced by approximately $81,443 while the plan is still active. The Bill does not require the Minister to consider the individual impact on participants already operating under established arrangements, does not specify a notice period, and does not provide a mechanism for self-managers to adjust commitments already made to providers.

In a regional area with constrained provider supply, mid-plan funding reductions are not a theoretical concern. Provider relationships take months to establish. Support schedules built around a participant’s specific needs, routine, and available local providers cannot be restructured quickly or cheaply. A determination that takes effect on 1 October 2026 will disrupt arrangements that cannot be replaced within any notice period the Bill currently requires, which is no notice period at all.

Specific concerns regarding this provision:

• Any determination that reduces support category funding should include mandatory transition protections for participants in active plans, of no less than the remaining duration of the plan at the time the determination takes effect.
• Participants must receive written notice of any determination affecting their plan with sufficient lead time to adjust provider arrangements and employment commitments.
• Self-managers should have access to an expedited review pathway where a determination creates a funding shortfall against supports already committed under existing provider agreements.
• The determination power should be subject to disallowance by either House of Parliament, consistent with appropriate parliamentary oversight of changes that materially affect the living arrangements of people with disability.

Conclusion

The NDIS changed ’s life. It changed mine. It is one of the most important things this country has done. It is not perfect, and in our experience it has never been financially adequate to fully meet ’s needs, but it gave us something that nothing before it had given us: the ability to build a life around what actually needs, and what she actually wants.

What it gave , above everything else, is autonomy. A sense of having some control over what her days look like. That is not a small thing. For a 28-year-old woman who cannot be left alone, who cannot manage her own money, who cannot travel independently, who relies on other people for almost every activity of daily life,

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the experience of choosing her own schedule, cooking dinner for her family, going to the gym, making art that hangs in exhibitions, going out on a Friday night with friends she has picked, is the experience of having a life rather than being managed through one.

is funny. She is bright. She is an artist with opinions about her own work. She loves Shania Twain and Jessica Mauboy and will tell you exactly which songs are her favourites. She goes to the gym twice a week and she is proud of it. She cooks dinner on Mondays and she knows the family is eating food she chose and prepared. She has friends. She has a community. She has something to get up for.

None of that existed under the old model. Under the old model she was ferried around in a group bus to activities she had not chosen, with people she had not chosen, and she was miserable. It took years to understand what she needed and to build what she has now. It cost me professionally and financially. It was worth every bit of it.

My fear, which I am asking this committee to take seriously, is that the provisions of this Bill as they apply to our situation will not correct waste or misuse. They will undo what works. The 50 per cent cut to social and community participation funding will not find savings in excess spending. There is no excess here. It will find them in the gym, in the art studio, in Monday cooking, in Friday dinners with chosen friends. It will find them in the hours that allow me to work. It will push back toward the group bus model because it costs less per hour, and it will cost her everything she has gained.

I am one person, with more stability than most carers in this situation will ever have, telling this committee that the system is already at its limit. The OT assessment that formally documented that limit was completed at significant cost, took months to arrange in a regional area with inadequate provider supply, and was never submitted because the NDIA’s own administrative process failed. is currently managed under a plan her own assessment found inadequate. The Bill proposes to cut it further.

I ask the committee to recommend:

• That the I-CAN functional capacity assessment framework include a streamlined pathway for participants with permanent chromosomal conditions where functional capacity is clinically established and not in dispute.
• That regional supply of I-CAN qualified assessors be addressed as a precondition of the new framework, with interim protections for participants in areas where qualified assessors are not available within a reasonable timeframe.
• That the 50 per cent reduction to social and community participation funding not apply to participants whose current plans are already documented by qualified practitioners as inadequate to meet their assessed needs.
• That the Ministerial determination power be subject to parliamentary disallowance, mandatory participant consultation, and transition protections for participants in active plans.
• That the disproportionate impact on single-carer households where workforce participation depends directly on the supports being cut be formally

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considered, including the downstream costs to Centrelink and the health system of carer workforce exit.

• That the Government address the administrative failures, including unavailable planners and closed review windows, that prevent completed assessments from being acted on, before introducing new compliance requirements that depend on a functional administrative system.

The NDIS is worth protecting. is worth protecting. I am asking this committee to distinguish between the parts of this Bill that address genuine waste, and the parts that will take a carefully built, hard-won life apart.

Mother and primary carer of

29 May 2026

Contact details provided separately to the committee secretariat.