Supplementary 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 Date: 31 May 2026

Note on this submission

I made an earlier submission to this inquiry dated 29 May 2026, addressing the mid- plan impact of the proposed funding reduction, the ministerial determination power, and the absence of transition protections for self-managed participants in active plans. This supplementary submission addresses matters not covered in that submission. It focuses on Schedule 1, Part 4 of the Bill — specifically the 30% reduction to social and community participation funding and the Inclusive Communities Fund as the stated substitute — and provides evidence about what those provisions will produce in practice for my daughter and for our household.

Introduction

My daughter is 28 years old and has Down syndrome. I am her sole primary carer, her NDIS self-manager, and a single parent. There is no other carer.

This submission is about one thing: the model of support that Schedule 1, Part 4 will fund, and the model it will defund. I have direct, sustained, observed evidence of what both models produce for . That evidence is the basis of this submission.

1. The group activity model: what I observed

The group activity model did not maintain ’s baseline. It eroded it.

When left school her NDIS funding was used exclusively to support the standard group activity model, running between 9am and 3pm on weekdays. This is the model the Inclusive Communities Fund will replicate and fund at scale. ’s baseline coming out of school was already not strong. The group model did not improve it. It made it worse.

What changed, and what followed

A change in the model of support — not just the setting — produced material, sustained, and documented improvements in ’s functional capacity, independence, and wellbeing.

I changed ’s supports to a mixed model — a combination of individual community access supports and in-home supported independence, alongside some group activity. The shift was not cosmetic. It was a fundamental change in the model of support and what it was designed to achieve.

The results were material and sustained. now cooks. She manages her own personal hygiene without prompting. She unpacks the dishwasher, does her own washing, and participates in family conversation and household life. She has friendships and activities she actively chooses and engages in. Exercise is a regular part of her life and has measurable positive effects on both her physical and mental health. These are not small things. They are the difference between an adult with agency and an adult in decline.

Two things drive this and they are inseparable. The first is community access — genuine, individual, adult participation in the world outside the home. Not group activities designed for convenience, but supported engagement in real community life that she has some say over. The second is in-home supported independence. This is where the nuance matters and I want the committee to understand it clearly.

is 28. No 28 year old should have her mother do everything for her. That is not good for her and it is not sustainable for me. But independence for will always require support. The question is what kind of support, delivered how, produces the best outcome.

Support workers in the home enable to feel agency in a way that support from a parent cannot, regardless of the quality of that relationship. That is not a reflection on our relationship. It is how supported independence works for adults with intellectual disability. When a support worker helps make a cup of tea or manage her morning routine, experiences it as doing it herself. When I provide the same support, the dynamic is different. She resists. The resistance increases her dependence and increases my load simultaneously.

This is the mechanism the committee needs to understand. Agency produces capacity. Capacity reduces the support required. Reduced support load means I can work. When agency is removed — when is passive, disengaged, and dependent — the support required from me increases, resistance increases, and my ability to do anything else, including work, decreases accordingly.

The two funding streams that make this possible — community access and in-home supported independence — are not separable luxuries. They feed each other. A day that includes both produces an engaged adult who is increasingly self-directed. A day that is only group activity between 9 and 3 produces the opposite. Under ’s current self-managed plan, core funding is used flexibly across both. That flexibility is what makes the model work. Schedule 1, Part 4 defunds it.

This is formally documented. A Functional Capacity Assessment completed by an Occupational Therapist in February 2025 notes explicitly that is resistive to me when being encouraged to engage in daily activities at home, and that this resistance is a cause of strain on our relationship. The OT recommends formal support workers for in-home daily living specifically because the support worker dynamic enables ’s independence in a way that the parent-child dynamic does not. This is not my assessment. It is the finding of a qualified clinician.

What I observed with is not anecdotal. It is consistent with a well-established body of Australian and international research. Professor Christine Bigby, Director of the Living with Disability Research Centre at La Trobe University and appointed an Officer of the Order of Australia in 2025 for her contributions to disability research, have documented extensively that the quality and nature of support — not simply its existence — is the primary determinant of quality of life outcomes for people with intellectual disability. Her Australian research comparing supported living with group- based models found that outcomes between services are variable, with the nature of support the key determinant, not the setting. Broader research confirms that social inclusion has the largest influence on quality of life for people with intellectual disability, and that outcomes improve when support is individualised and adapted to the person. Moving someone from one setting to another without changing the model of support does not improve outcomes. What produces better outcomes is individual, person-centred support that builds agency and genuine community connection. This is what the current model provides for . It is what Schedule 1, Part 4 will defund.

There is a further consequence of inadequate funding that I am compelled to put before the committee, because it speaks directly to what insufficient support produces in practice.

There are periods when I cannot take with me. My son has essential activities — schooling, medical appointments, sport, the ordinary and non-negotiable requirements of childhood — that require my presence. These are not discretionary. They are the basic obligations of raising a child. , as an adult, does not always want to attend activities that are not relevant to her, and in many cases it is not practically possible to bring her. Getting ready and supported to leave the home requires significant preparation time and personal support that is not always available. The result is that there are periods, typically between one and three hours, where is at home without formal support.

I want to be clear about what this means for a CANS Level 7 participant who cannot be left alone. I have put in place what safeguards I can. has her phone. There are strict protocols — she does not answer the door, she answers when I call, she calls me if she needs me. I check in by phone while I am away. But I am not confident that if something happened she would know what to do. That is not a criticism of . It is a statement of her formally assessed functional capacity. It is also a statement of what inadequate funding produces.

I raised this risk with plan managers. It was not escalated. The response was to obtain a functional capacity assessment and await a plan review. The assessment took months to fund and months to complete. By the time it was finalised the review window had closed, the plan manager was no longer available, and no replacement was assigned. The risk was documented and then administratively buried.

The Bill proposes to reduce funding further for this participant, in this household, with this gap already present and unresolved. That is not scheme sustainability. That is an amplification of an existing and documented safety risk.

The core funding allocation does not reflect assessed need — and the proposed cut makes this worse

The 30% cut is being applied to a funding category whose allocation was never clinically assessed — and which has been used flexibly to cover daily living needs that the daily living budget alone cannot meet.

 's plan is entirely self-managed. In practice this means that core funding is used

flexibly across categories — a support worker who assists with her morning outine and then takes her to the gym draws from both daily living and social and community participation within the same shift. This is not a misuse of funds. It is exactly how flexible core funding is designed to work for a participant with complex, interconnected support needs. Daily living and community participation are not two separate things for . They feed each other. A day that includes supported

independence at home and meaningful activity in the community produces an

engaged adult. A day that includes neither produces the opposite.

The allocation between categories in ’s plan was determined by the NDIA’s planning process. It was not determined by a clinical assessment of where her support needs actually sit, and I had no meaningful input into how the core was split. The result is a plan weighted heavily toward social and community participation — ot because that is where most of ’s need lies, but because that is how the NDIA allocated the budget.

The February 2025 OT assessment tells a different story. The OT assessed at CANS Level 7 — the highest level of support need, indicating she cannot be left alone and requires 24-hour care. Her Barthel Index score was 12 out of 20, indicating high support requirements for daily task completion. Her Lawton-Brody IADL score was 1 out of 8, indicating full-time assistance is required across all daily tasks. The OT’s recommendations weight daily living support heavily — half an hour of support before and after I leave for and return from work, two hours of evening support for personal care and preparation for the following day, and overnight support when I am required to travel with my son. The report explicitly states that the current arrangements are not enough and are not sustainable.

The plan allocation does not reflect this assessment. It was never recalibrated to match it. The daily living category is significantly underfunded relative to assessed need, and flexible use of the larger social and community participation pool has been the practical mechanism for covering that gap.

Schedule 1, Part 4 applies a 30% reduction to the social and community participation category. For ’s plan, that means the following:

Current allocation, Assistance with Social, Economic and Community Participation (core, flexible): $162,886.04
Current allocation, Assistance with Daily Life (core, flexible): $35,350.70
30% reduction applied to social and community participation: approximately $48,865 removed
This reduction takes effect 1 October 2026 — ten months before ’s reassessment date of 14 August 2027 This is not a reduction in excess spending. It is a reduction applied to a funding structure that was never correctly calibrated, in a plan a qualified OT has formally assessed as already insufficient to meet ’s needs. The Bill makes no provision for reviewing the category split before applying the reduction, and no provision for self- managed participants whose flexible core has been used to compensate for an underfunded daily living allocation.

This is a systemic problem, not only ’s. Self-managed participants were never required to justify the split between daily living and social and community participation within their core budget, because the flexibility of core meant the

categorical split had no practical consequence.

The NDIA determined the allocation. No clinical assessment of whether that allocation was appropriate was ever required or conducted. The Bill now proposes to cut one of those categories by 30% as if the allocation reflects a meaningful, assessed distinction between two types of need. For most self-managed participants it does not.

4. The impact on my ability to work - and why this cannot be treated as a personal circumstance

Adequate individual support is not a lifestyle preference for this household. It is the structural condition that makes employment possible - and its removal is a cost transfer, not a saving.

I am a single parent. I am ’s sole primary carer. I am also the sole income earner for our household. These three things are not separable. The NDIS funding that supports ’s participation in the world is not a supplementary benefit for our family. It is the structural condition that makes it possible for me to work at all.

I want to be precise about my current situation, because the committee needs to understand what it represents. I work from home in a flexible, commission-based role. This is not typical. It is a personal circumstance that most sole carers of adults with complex disability will never have access to. I say this not to minimise my own situation but to make a point the committee should sit with: I am the best-case version of a sole carer in this position. I have more flexibility than most. And even with that flexibility, the current support model - which the OT has formally assessed as already inadequate - only just makes employment possible.

requires 24-hour care and cannot be left alone. This is formally assessed and documented. When    has support - when a support worker is present, when she is engaged in community activity, when she has structure and purpose in her day - I can work. When she does not, I cannot. It is that direct.

The group activity model that the Inclusive Communities Fund will replicate runs between 9am and 3pm. It does not cover the hours that matter for meaningful employment. No employer offering a senior role operates on school hours. Even working from home, a 9 to 3 model means is present and unsupported for the hours before, the hours after, and every weekend. She cannot be left alone during those hours. The informal carer load - which is already at the higher end of severe on the formal assessment - falls entirely to me.

My ability to work from home is not a solution the Bill can rely on. It is luck. Most sole carers do not have it. The policy cannot be designed around the assumption that carers will absorb the gap informally, because that assumption holds for almost no one and does not actually work even for me.

What adequate support looks like

What adequate support looks like — support that genuinely enables employment — is individual, flexible, and available across hours that approximate a working day. It is what I have been trying to build toward with ’s current support model. My son is getting older and more independent. ’s engagement, agency and functional capacity have improved significantly with the right supports in place. For the first time in years there is a realistic path toward full-time employment that could provide genuine financial security for this household — for me, for , and for my son.

The Bill removes that path. It defunds the model that makes it possible and replaces it with one that does not support employment under any realistic interpretation of how a working day functions. The downstream consequence is not abstract. It is Centrelink dependency, the long-term financial insecurity of a single parent household with no capacity to build superannuation or savings, and the personal and social cost of a carer who is unable to sustain employment because the formal support system has been withdrawn.

The government’s savings projections for this Bill have not accounted for this cost. What Treasury expects Centrelink, Medicare, state mental health services and the broader health system to spend absorbing what the NDIS drops has not been publicly modelled. For this committee to recommend the Bill in its current form without that accounting would be to endorse a saving that is not a saving — it is a cost transfer, from the NDIS to every other part of the system that picks up what follows when sole carers exit the workforce.

The committee should also consider what the government is already saving by living at home with me — and what the cuts risk triggering in terms of long-term cost to the state.

 's total NDIS plan over three years is $239,176 — approximately $79,725 per year. This covers everything: community participation, daily living, capacity building, and transport.

The informal care I provide — 24 hours a day, every day, as her sole carer — is not funded. It is absorbed entirely by me at no cost to the government.

A participant with ’s assessed support needs — CANS Level 7, requiring 24-hour care and supervision — would require Supported Independent Living if she were not living at home. SIL costs in Australia in 2026 range from $200,000 to over $320,000 per year for support services alone, before accommodation and living costs are factored in. At the conservative end, the informal care I provide is saving the government a minimum of $120,000 per year in avoided SIL expenditure. Over the three-year plan period that is a saving of at least $360,000 — and likely significantly more.

The Bill proposes to save approximately $48,865 by cutting ’s social and community participation funding over the remaining life of this plan. That figure represents less than four months of the SIL expenditure the government is currently avoiding because lives at home with me.

The following recommendations are specific, targeted, and directly tied to provisions in the Bill.

I am not asking the committee to reject the principle of scheme sustainability. I am asking it to look carefully at what this Bill actually does in practice, for participants like and carers like me, and to recommend changes that reflect that reality.

Specifically, I ask the committee to recommend the following:

First, that before any reduction is applied to the social and community participation category of a self-managed plan, the NDIA must conduct an individual review of whether the allocation between core categories reflects the participant’s current assessed needs. Self-managed participants were never required to justify the split between daily living and social and community participation within their core budget, because the flexibility of core funding meant the categorical split had no practical consequence. The NDIA determined the allocation. No clinical assessment of whether that allocation was appropriate was ever required or conducted. Applying a categorical reduction to a split that was never clinically assessed is not a targeted saving. It is an indiscriminate cut dressed as one. This review must occur before the October 2026 commencement date, and must apply to all self-managed participants with intellectual disability.
Second, that the reduction should not apply mid-plan. Any ministerial determination that reduces support category funding must 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. A determination that takes effect 1 October 2026 will disrupt support arrangements built around a plan that runs to August 2027. That is not a transition. It is a mid-plan cut with no notice and no mechanism for adjustment.

Third, that the Inclusive Communities Fund must not be treated as an equivalent substitute for individual social and community participation supports. For participants where group-based supports have a documented history of adverse outcomes, or where individual support is clinically recommended, the Bill must preserve individual support as an available option. The fund as described does not do this.
Fourth, that the government’s savings projections be independently reviewed to include the full downstream cost of carer workforce exit — Centrelink, Medicare, state mental health services, housing services — before the Bill is passed. A saving that transfers cost to another part of the system is not a saving. It is an accounting choice.
Fifth, that the government’s savings projections also account for the cost of informal care arrangements collapsing. The NDIS currently avoids significant SIL expenditure because participants like live at home with family carers. Cuts that make those arrangements unsustainable do not save money. They defer and multiply the cost.