Submission 1885
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by:
- Capacity: Foster Carer | Mother | Teacher |
- Disability Support Professional | Concerned Citizen Location: New South Wales, Australia Contact: Date: 16 May 2026 Publication: I consent to this submission being published on the parliamentary website.
Summary
This submission is made by an individual with direct, long-term professional and personal experience supporting people with disability. I am a mother and foster carer — one of my children has special needs and has been a NDIS participant for several years. I have worked in schools supporting children with disability, and I currently work with organisations that support children and adults with special needs. I write in strong opposition to key provisions of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. My concerns come from years of lived experience navigating a system that is far more difficult, inconsistent, and damaging than the Government’s language around this Bill acknowledges.
About the Submitter
I am a mother and foster carer currently caring for two children, one of whom has special needs and is an active NDIS participant. I have worked in schools alongside children with disability and now work with organisations providing support to children and adults with special needs in the Illawarra.
I write from years of planning meetings, documentation, reviews, and advocacy. My submission reflects my own family’s experience with the NDIS over several years, as well as the experiences of the many participants and families I have supported professionally. I ask the Committee to hear this submission as the testimony of someone who knows, in granular and exhausting detail, how this system actually operates for the people it is meant to serve.
The NDIS Is Not Working as Simply as the Government Claims
Before addressing the specific provisions of this Bill, I want to state clearly and on the record: the NDIS as it currently operates is not the accessible, straightforward, person-centred system the Government describes. The gap between the language used in policy documents and the reality experienced by
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The impact on people living with disability, their carers, and their families is vast. The proposed Bill will not close that gap. Based on my experience, it will widen it.
My son has had special needs and has accessed the NDIS for several years. Over that time, and without adequate explanation, his funding was progressively reduced. This occurred despite our family maintaining a comprehensive folder of reports, specialist referrals, formal diagnoses, assessments, and clearly documented duty of care requirements. We were not new to the system. We were not unprepared. We had done everything the system asked of us - and still, his plan was cut.
It was not until approximately four years ago, when we escalated our concerns and formally demanded an explanation - enlisting my son’s FACS worker and his NDS coordinator to collectively challenge the reductions - that the situation began to be addressed. We had to fight, collectively and persistently, simply to understand why a child with documented, diagnosed, and ongoing support needs was receiving less support year after year. That fight should never have been necessary.
I want the Committee to sit with that for a moment: a mother with professional experience in the disability sector, with a FACS worker, a coordinator, and a folder full of specialist documentation, still had to demand answers about why her sons funding was being reduced- it has never been expalined. just a random phone call from a private number saying that the plan was approved. Do I need any more money? This was very confusing. I replied: I only need what was in the budget as we had taken professional input to look at the year for any risk . If this is the experience of someone with knowledge, professional networks, and the capacity to advocate - what is happening to families without those resources?
3. What I Have Witnessed Professionally: Denial, Exhaustion, and Exploitation
My son’s experience is not an isolated case. In my professional work, I have witnessed patterns of denial and systemic dysfunction that I consider deeply alarming, and which this Bill does nothing to address.
Unjustified denial of supports and equipment
I have seen many participants denied care, equipment, and support to a degree that I find genuinely concerning. The process of challenging a denial - of asking why a wheelchair, a communication device, a support worker hour, or a therapy session has been refused - is exhausting, complex, and deeply inconsistent. There is no clear, reliable explanation for why the same type of support is funded for one participant and refused for another with comparable needs. This inconsistency destroys trust in the system and leaves families unable to plan. There is also a lack of understanding when he comes to acknowledging that one individual special needs may be variable across different ages different situations and capacities.
The toll on participants with mental health needs
For participants who also have mental health needs, the burden of fighting for support within this system has been soul-destroying. I have worked alongside clients who have become so exhausted by the process of pursuing denied supports- by the reviews, the paperwork, the waiting, the inconsistency - that their mental health has deteriorated significantly in the course of advocating for their own care.
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This is not a side effect of the system. It is a failure of the system. A scheme designed to support people with disability should not itself be a source of harm to the people it is meant to help.
Provider price exploitation
I also wish to address the issue of provider pricing, because it is central to the question of where the NDIS’s financial pressures actually originate. I have witnessed providers triple their prices because the funding framework allows them to do so. This is not the fault of participants. Participants do not set prices. Participants do not design billing structures. Participants simply seek the services they need to function in the community, access daily life, and build independence.
The pricing expectations that have driven cost growth in the NDIS were created by the regulatory environment the Government established. The fault lies with the framework, not the participant. Yet it is participants whose budgets are being cut, whose eligibility is being tightened, and whose access to community participation is being halved. Providers who have exploited pricing flexibility face no equivalent reduction. This is profoundly unjust, and this Bill does not correct it.
4. What These Proposed Changes Mean in Practice
Against this backdrop — of funding cuts without explanation, unjustified denials, soul-destroying appeals processes, and provider exploitation — the Government is now proposing to:
- Reduce social and community participation budgets by 50% from October 2026.
- Introduce new functional capacity assessments to determine NDIS eligibility.
- Tighten unscheduled reassessment criteria.
- Transition children with autism and developmental delay to a new Thriving Kids program that is not yet fully designed.
Each of these changes will increase the burden on participants and families who are already operating at the limit of their capacity. Each of these changes will make it harder — not easier — for people with genuine, documented, ongoing support needs to access the care they require. And not one of them addresses the provider exploitation and pricing dysfunction that has contributed significantly to the scheme’s cost growth.
5. Concerns Regarding the Reset of Social and Community Participation Budgets
The proposed 50% reduction in social, civic and community participation budgets is not a minor administrative adjustment. For the participants I know and support, these budgets fund the activities that connect them to their communities. These are not luxuries. For a child or adult with special needs, community participation is inclusion. It is the practical expression of the right to belong.
The isolation narrative: ‘You should stay home’
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I want to name something that I have observed repeatedly when support hours for community access are reduced: the narrative shifts. Rather than asking how a participant can be supported to access their community with fewer resources, the message — spoken or unspoken — becomes that they should simply stay home. That community access is a bonus, not a right. That if the funding is not there, the solution is withdrawal rather than inclusion.
This narrative is wrong, and it is dangerous. For many adults with disability, a support worker is their only means of accessing the community. They do not have a partner, a group of friends, or a family member who can take them to an appointment, a café, or a community event. When that support worker hour is cut, they do not find another way. They stay home. And over time, that isolation compounds — their skills deteriorate, their mental health declines, their world shrinks. The cost of that deterioration, in human terms and eventually in support terms, far exceeds whatever was saved by cutting the community access budget.
Adults with disability are not asking for extraordinary things. They are asking to do what every Australian takes for granted: to go out, to participate, to be part of their community. The framing that this is excessive or unaffordable reflects a fundamental misunderstanding of what the NDIS is for.
Children with special needs: the weight of a single outing
For children, the contrast is even starker. A child without disability has access to sport, birthday parties, school excursions, playdates, holiday programs, and casual community activities — a rich, varied social life that builds friendships, confidence, and belonging almost without effort. A child with special needs may have access to one supported community outing. One. And that single outing carries a weight of planning, cost, and coordination that most families will never have to consider.
I want to be precise about what a supported community outing actually involves for a child with special needs, because I do not believe this is well understood by those making decisions about these budgets. It is not simply taking a child to the park. It is a formalised, carefully planned activity with clear duty of care obligations. It accounts for the child’s specific sensory needs, communication requirements, behavioural supports, and safety considerations. The people present are trained to understand those needs. The environment is chosen or prepared with those needs in mind. The activity is structured to give the child the best possible chance of success—of genuinely participating, connecting, and enjoying themselves safely.
For that child, that one outing may be the only social experience they have outside their immediate home and school environment. It may be the only time that week—or that fortnight—when they are part of something, when they feel included, when they experience what it is like to simply be a child among other children. Reducing or removing the funding for that outing does not save a small amount of money. It removes something irreplaceable from a child’s life. It narrows their world at precisely the age when it should be expanding.
The Government has stated these supports are not always improving outcomes. I would invite any member of this Committee to accompany a child with special needs on one of these outings—to watch what it means to them, to see the preparation it
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requires, and to consider what is lost when it is taken away. I do not believe they would describe it as non-essential.
Concerns Regarding Eligibility Assessments and Autism
The introduction of standardised functional capacity assessments raises serious concerns for anyone who has worked closely with people with autism or complex support needs.
People with autism frequently present very differently in a clinical assessment environment compared to their everyday reality. The phenomenon of masking — where an autistic person expends enormous energy to appear functional in a structured setting — means that a one-hour assessment may produce a picture of capacity that bears no resemblance to the person’s actual daily experience. A child who can answer questions calmly in a quiet room may have a complete shutdown that evening from the effort of that performance. This is well-documented in the clinical literature and well-known to practitioners in the field. If the Government’s new assessment process does not explicitly account for this, it will systematically underassess the needs of autistic participants and deny them access they genuinely require.
I am also concerned about the Thriving Kids program for children aged 8 and under. The principle of early intervention support is sound. But the detail matters enormously. I have seen what happens when policy gaps exist — they are exploited by providers and organisations, not by participants. Before this transition proceeds, the Government must provide legislated clarity on escalation pathways, quality standards, and accountability mechanisms.
The Hidden Cost: Carers and Families
Every time a support is cut, a budget is reduced, or an appeal is lost, the cost does not disappear. It is transferred — to mothers, to foster carers, to families, to unpaid advocates. I have carried that cost. The families I work with carry it every day.
This Bill will increase that transfer. The Committee should understand that the Government’s savings projections do not account for the downstream costs of increased carer burden — on health, employment, family stability, and the wellbeing of the carers themselves. These costs are real. They are simply borne by individuals rather than appearing in a budget line.
Recommendations
I make the following recommendations to the Committee:
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Recommendation 1: Do not proceed with the 50% reset of social and community participation budgets until the Inclusive Communities Fund is fully designed, funded, oprational, and independently evaluated.
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Recommendation 2: Require that all funding reductions and plan changes be accompanied by a written, plain-language explanation that participants and carers can understand and act upon.
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Recommendation 3:
Ensure any new functional capacity assessment explicitly accounts for masking and variable presentation in autism, is conducted across multiple settings, and includes accessible, timely, and independent review rights.
Recommendation 4:
Delay the Thriving Kids transition until legislated quality standards, escalation pathways, and provider accountability mechanisms are in place.
Recommendation 5:
Direct system integrity and fraud prevention efforts at providers and organisations — not at participants — and introduce stronger pricing oversight to prevent the exploitation I have witnessed firsthand.
Recommendation 6:
Conduct a formal carer impact assessment before any provisions of this Bill commence, with specific attention to foster carers, kinship carers, and mothers of children with disability.
Recommendation 7:
Require that any NDIS planning decision, funding reduction, or eligibility ruling that contradicts or conflicts with a formal medical diagnosis, specialist assessment, or clinical recommendation must be made by a qualified professional with relevant medical or allied health expertise — not by an administrative officer alone. A ruling that goes against documented clinical evidence must be required to clearly state the medical or clinical basis for that decision in writing.
Recommendation 8:
Protect and strengthen the right of participants to challenge rulings that contradict their diagnosis or medical evidence. The Committee should be aware that proposed changes to legal aid funding and the tribunal system risk removing the only meaningful avenue many participants have to contest decisions made against them. A participant who cannot afford legal support and cannot access a tribunal is a participant with no rights in practice, regardless of what the legislation says on paper. The right to challenge a ruling — particularly one that defies clinical evidence — must be preserved, properly funded, and genuinely accessible. Removing complaint mechanisms and tribunal powers does not fix a broken decision. It simply makes that broken decision permanent.
Closing Statement
The people this scheme is meant to serve are not asking for special treatment. They are asking to live. To participate. To build skills, make friends, access their community, and develop independence. My son is one of those people. The children and adults I work with every day are those people.
The NDIS, when it works, has made those things possible. But it has never worked as easily or as fairly as the Government suggests. The proposed Bill does not fix the dysfunction that families and carers have endured for years. It reduces the support available to people who already have too little, while leaving untouched the provider behaviour and pricing exploitation that has genuinely damaged the scheme.
I urge this Committee to recommend the amendments necessary to ensure this Bill does not cause serious, lasting harm — and to hold the Government to the principle
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that underpins the NDIS: that every Australian with permanent and significant disability has the right to the support they need to live a good life.
Mother | Foster Carer | Disability Support Professional New South Wales