Submission to the Senate Community Affairs Legislation Committee

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

Submitted by: — Parents and primary nominees of an adult NDIS participant Date: 29 May 2026

About This Submission

My husband and I are submitting this jointly as the parents and primary nominees of our son, who turns 21 in November this year and lives with autism, is non-verbal, and has additional intellectual disabilities. The voice throughout is mine, but this submission reflects our shared experience,- and we both stand behind every word of it.

  has been our son's full-time carer since his official diagnosis at three and three-quarter years of age, stepping back from a successful business to take on that role. I work full time to support our family financially. We are both in our 50s.- This submission focuses on four areas of the Bill that we believe will cause direct,

foreseeable harm to participants like our son and to families like ours: the proposed cuts to Social and Civic Participation funding (s.34A), the risk of standardised planning that fails to account for the individual, the Ministerial power to remove cohorts of participants without merits review, and the proposed ‘informal supports first’ test (s.34(1K)).

We write from more than 17 years of lived experience navigating the disability system for our son. We are not lawyers. We are parents who have watched their child thrive because of the NDIS — and who are now watching legislation be proposed that would take that away. Given the tight timeframe to respond to a Bill of nearly 300 pages, we acknowledge that we may have made errors in our reading of specific provisions. That has not stopped us from responding, because the potential impact on our son and families like ours is too important to leave unanswered.

What the Bill Proposes

Under s.34A of the Bill, the Minister may reduce funding in any support category by legislative instrument, with the first scheduled cut targeting Social and Civic Participation, phased in from 1 October 2026. Critically, the Explanatory Memorandum confirms that these reductions are not subject to merits review. Participants whose plans are cut have no avenue to challenge that decision, regardless of the impact on their safety, health, or wellbeing. The public framing of this cut has suggested that Social and Civic Participation funding is discretionary — that it pays for workers to scroll on their phones while accompanying participants to leisure activities. I want to place on the record, in the most direct terms I can, that this framing is wrong, and that for families like ours it misrepresents what this funding actually does.

Our son is nearly 21 years old. He is non-verbal. He has autism and additional intellectual disabilities. Communication with him has always been a challenge — pointing, gesture, and a lifetime of trying to read him have brought us closer to understanding him than anyone else can, but even after nearly 21 years there are many times we simply do not know what he needs or wants. He cannot tell us when he is in pain. He cannot tell us when he is unwell. That gap — between what he experiences and what he can express — is one he is only beginning to bridge, slowly and with enormous effort, through his speech app, being in the community. Which is precisely why anything that disrupts the support structure helping him do that is not a budget adjustment. It is a step backwards that could take years to recover from, if it can be recovered from at all.

Several years ago, my son was introduced to a speech-generating device — an AAC app. For a long time, he was reluctant to use it with us. At home, the pressure to communicate differently simply is not there — not because we always understand him, but because our whole environment has been adapted around trying to meet him where he is. That is not the same as him being understood.

His support workers changed that.

His support worker team — a skilled, dedicated group of young women who work together as a coordinated unit — created a different relational dynamic. Peer-like. Goal-oriented. They had the time, the training, and the consistent presence to gently require more of him. And over time, he began to use his speech app more. Then more. Then he is now forming sentences (limited but starting).

My son — who is non-verbal — is now started communicating in sentences through his speech app. Not with his voice, but with intention, with structure, and with increasing confidence.

That is a speech therapy outcome. That is what speech pathologists work toward over years of clinical intervention. His support workers achieved it through funded community participation — not in a clinic, not on a Medicare item number, but through the daily, relational work of being present with him in the world.

I want to be explicit about the nature of his support worker team, because the public narrative about this funding does not reflect what we experience. These are not babysitters. They are not simply minders accompanying a young man to pass the time. They work as a coordinated professional team. They have shared goals for our son. They communicate between themselves about his progress, his needs, and his week. His lead support worker attends his speech therapy appointments regularly. She updates the speech pathologist on what has been happening — what words he has used, what situations have arisen, what has worked. The speech pathologist in turn gives the team specific tasks and strategies to implement between sessions. They carry those strategies into the community, into his daily life, and into every outing they share with him.

This is integrated care. It is being delivered through Social and Civic Participation funding. Cutting that funding does not just reduce his social life — it actively breaks the therapeutic chain that is producing measurable, documented growth.

The Ordinary Life Test

The NDIS was built on a commitment to ordinary life outcomes — the principle that a person with disability deserves access to the same kinds of life experiences as a person without disability of the same age, in the same circumstances.

My son is nearly 21 years old. I want the Committee to sit with a simple question:

What This Funding Is — And Is Not

I want to be direct about something, because the public debate has conflated different types of support. As a general rule, my husband and I attend medical appointments with our son — GP visits, specialist appointments, and the like. We are his parents. We know his medical history and can communicate with clinicians on his behalf. That is our role and we do not outsource it.

Dental appointments are a useful illustration of what Social and Civic Participation funding actually achieves, and why the support worker relationship matters beyond simple companionship. When our son first began seeing a dentist, he would sit in a chair in the corner of the room. The dentist had perhaps two minutes before our son became too distressed to continue. Any dental work that could simply be done in a chair had to be done in a day hospital under general anaesthetic — a cost to the health system, and an ordeal for our son.

Over time, with the consistent encouragement of a trusted long-term support worker attempting alongside him, that changed. He now sits in the dentist’s chair. He lets the dentist examine him, remove plaque, and complete a proper check. He steps up — because he

The Broader Cost to Community Inclusion

There is an argument beyond our son’s individual situation that I urge the Committee to consider. Inclusion is not a one-way street. When people with disability are present in community spaces — at the bouldering gym, at concerts, in cafes and parks and public events — the broader community becomes accustomed to that presence. People without disability learn, through ordinary contact, that disability is a normal part of human life. Tolerance, acceptance, and genuine inclusion grow from repeated, ordinary exposure.

When budgets are cut and participants are forced to remain at home, that exposure disappears. The community becomes less practiced at inclusion. The next generation grows up having rarely encountered people with disability in everyday settings. The social progress that has been quietly built over years of the NDIS — the bouldering gym that now asks after our son by name, the community that makes room without being asked — begins to erode.

We have heard this story before. It is common to hear older Australians remark that autism, or intellectual disability, or complex developmental conditions ‘didn’t exist’ in their generation— that today’s diagnoses are exaggerated, or manufactured, or a product of modern over- medicalisation. This belief is not born of malice. It is born of invisibility. Those people existed. They were there. But they were hidden — placed in large residential institutions, kept from gublic life, removed from schools and communities and streets. A generation grew up never seeing them, and so genuinely came to believe they were not there.

Australia’s Disability Royal Commission heard extensive evidence about what life inside those institutions looked like. Deinstitutionalisation — the long, imperfect process of bringing people with disability back into community life — has taken decades. The NDIS, for all its imperfections, has been one of the most powerful engines of that process. It has put people with disability into workplaces, gyms, restaurants, concert venues, and community events in a way that no previous policy framework achieved.

Cutting Social and Civic Participation funding risks reversing that. Not overnight. Not dramatically. But gradually, quietly — one plan renewal at a time — participants will spend more time at home and less time in the world. The next generation will grow up less accustomed to their presence. And twenty years from now, someone will say: ‘I don’t remember seeing people like that when I was young.’ They will be right. And we will have chosen that outcome.

Cutting Social and Civic Participation funding does not only harm participants. It impoverishes the communities those participants can no longer reach.

The Long-Term Cost the Government Is Not Counting

I want to name a fiscal argument that I believe is being ignored in the sustainability discussion. The cuts proposed to Social and Civic Participation funding are being framed as savings. They are not savings. They are cost deferrals — and the costs they defer are larger than the costs they avoid.

My husband is in his mid-50s. He has been our son’s full-time carer for approximately 17 years. He will not always be able to provide that care. As he ages, as his physical capacity declines, as the cumulative weight of two decades of full-time caring takes its toll, there will come a point where our family cannot absorb what it is currently absorbing. At that point — if the support infrastructure that currently sustains our son in the community has been dismantled — the only option will be residential placement.

Residential care costs government significantly more than in-community support with funded participation. Group homes, supported independent living facilities, and residential placement involve 24-hour staffing, facility costs, and administrative overhead that dwarf the cost of the community participation funding now proposed for reduction. The government is proposing to cut a modest line item now in order to create a much larger liability later.

This is not sustainable. It is the opposite of sustainable. Keeping participants in community, supporting families who are supporting participants, and building the independence and skills that reduce long-term dependency — that is the investment that makes the scheme sustainable over decades. Cutting social participation funding now is cutting the very infrastructure that delays and potentially prevents far more costly outcomes.

Our Specific Concern: No Merits Review

The Explanatory Memorandum to this Bill explicitly states that changes to funding resulting from support determinations under s.34A are not subject to merits review. This means that if our son’s Social and Civic Participation funding is cut when his plan renews after 1 October 2026, we have no avenue to demonstrate that the cut will sever his speech therapy continuity, break his community connection, or remove the support that is producing documented developmental gains.

We simply absorb the cut. And our son regresses.

I urge the Committee to recommend that s.34A be amended to require that any percentage reduction to Social and Civic Participation funding be preceded by genuine consultation with the disability community, accompanied by a published impact statement, and that affected participants retain individual merits review rights where the reduction produces a demonstrable change in their therapeutic or safety outcomes.

I also urge the Committee to ensure that participants requiring integrated therapeutic support—where funded community participation is the delivery mechanism for clinical goals—are explicitly considered before any blanket percentage reduction is applied.

2. The Risk of Standardised Planning — Every Participant Is an Individual

Minister Butler has spoken about making NDIS plans more streamlined and consistent. I want to address this directly, because the intent behind it — reducing administrative burden and improving efficiency — is not unreasonable. The risk embedded in it, however, is significant.

My Son’s Experience

My son is nearly 21 years old. He is autistic, non-verbal, and has additional intellectual disabilities. On paper, his diagnostic profile might look similar to many other young people in the scheme. In practice, he is entirely himself — with his own communication style, his own responses to different environments and people, his own therapeutic history, his own goals, and his own hard-won progress that has been built over years of knowing him specifically.

Another young person of the same age, with the same diagnostic labels, could have fundamentally different needs. They might be working toward supported employment. They might communicate differently, respond to different strategies, thrive in different environments. They might have family around them, or none. They might have tried and failed at approaches that work well for my son or succeeded at things my son has not yet reached. Autism is not a single experience. Non-verbal is not a single experience. Intellectual disability is not a single experience. The diagnostic label tells you almost nothing about what a specific person needs from their plan.

The NDIS was built on an explicit promise: that plans would be individual. That the scheme would move away from the block-funded, one-size-fits-all model where people received whatever the local service happened to offer, regardless of whether it suited them. That promise was not just a policy commitment — it was embedded in the Act itself, in section 31, which required planning to be individual, choice-led and participant-directed.

This Bill repeals section 31 in full.

When those planning principles are removed from the legislation, individualisation stops being a legal requirement and becomes a discretionary aspiration — something the Agency may choose to honour, or may not, depending on administrative convenience and cost pressures of the day.

For my son, a templated plan built around what a ‘typical’ non-verbal autistic young person supposedly needs would almost certainly not fund the specific support worker team that has unlocked his communication. It would not recognise that his lead worker attends his speech therapy. It would not account for the fact that bouldering, specifically, has produced therapeutic gains that no clinical programme achieved. It would not reflect more than 17 years of accumulated, hard-won knowledge about what works for him and what does not.

Streamlining is not inherently wrong. But streamlining that erases the individual in favour of the diagnostic category is not reform — it is a return to the system the NDIS was created to replace.

The Power to Remove Cohorts of Participants — A Threat to Everyone

I understand that this Bill grants the Minister of the day — and any future Minister, of any future government — a power to exclude entire cohorts of participants from the scheme, or to remove their funding, by legislative instrument, without merits review.

I want to name what this means plainly: it means that a future Minister could, by instrument, remove autistic Australians from the NDIS. Or Deaf Australians. Or people with intellectual disability. Not through open parliamentary debate. Not through legislation that can be challenged. By instrument. Without the affected participants having any right to review that decision.

I support the objective of placing the NDIS on a sustainable long-term footing. I do not accept that doing so requires handing this power to the Executive without constraint.

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The current Minister may have good intentions. But this Bill does not bind his successors. Primary legislation is — or should be — a shield against an unknown political future. The cohort removal and blanket funding reduction powers in this Bill remove that shield entirely.

My son is autistic. He will be autistic for the rest of his life. His needs will not diminish because a future Minister issues an instrument. This provision keeps me awake at night, not because I distrust the current government, but because I have no way of knowing who will hold this power in five, ten, or twenty years, and what they will choose to do with it.

I urge the Committee to recommend that any power to remove or significantly reduce funding for a cohort of participants:

be subject to mandatory co-design and consultation with the disability community before any instrument is made;
require a published, tabled impact statement;
be subject to disallowance by Parliament; and
preserve individual merits review rights for affected participants where the change produces a harmful impact on their plan.

The ‘Informal Supports First’ Test — Our Family Cannot Absorb This

Our Family’s Situation

The proposed s.34(1K) requires that formal funded supports only be provided where reliance on informal supports — meaning family, friends, and community — would expose the participant to material risk of harm, abuse or neglect. I want to describe our family’s situation so the Committee understands what this test means in practice for real families.

My husband has been our son’s full-time carer since our son was officially diagnosed at three and three-quarter years of age. He stepped away from running his own business to take on that role. When our son was targeted by bullying and violence at his private special school in 2017, we made the decision to remove him from that environment and home- school him. That responsibility also fell primarily to my husband.

My husband is now in his mid-50s. He is not the man physically that he was when he first became a full-time carer. Twenty-one years of full-time caring leaves marks. I am in my late 50s. I work full time — I have to, to support our family financially, because my husband cannot work and care for our son simultaneously.

We have no family network. both my parents have passed away. My husband’s father has also passed; his elderly mother lives in a care facility with dementia. We are both the youngest in our families of siblings with them being much older and normal aging health issues, we are not estranged from our siblings, but we are not close. Those relationships do not translate into practical support. Our extended family struggles to connect with our son, and the occasions when they visit are not occasions on which we can rely for care.

We have very few friends in the way that people our age typically do. This is not unusual for families raising children with disability. The early years — the years when other parents were building social networks through school pickup and weekend activities — were for us years of diagnosis, crisis, adjustment, and survival. By the time you come up for air, those networks have formed without you. And the friends you do have are at a life stage you cannot relate to: adult children who have left home, grandchildren arriving, couples who can travel and socialise freely. We cannot.

What the Support Workers Have Given Our Whole Family

Having funded support workers for our son has not been a luxury. It has been the structural support that holds our family together.

It has meant my husband — who has given everything to our son’s care for two decades — has been able to take on some part-time casual work. Not much. But enough to feel like a person who contributes, who has something in his life beyond caring. That matters for his dignity and his mental health in ways that cannot be measured in a budget line.

It has meant that my husband and I — as a married couple — can occasionally, once every few months, have an evening out together. Not regularly. Not easily. But sometimes. To sit cross a table from each other as two adults and simply be together. To remember who we are outside of our roles as carers and providers. That is not nothing. That is the fragile thing that keeps a marriage, and a family unit, functioning.

Under the proposed s.34(1K), these supports — the ones that give my husband a few hours of relief, that give our son his peer connections, his community, his growth — would only be fundable if withholding them would produce ‘material risk of harm, abuse or neglect.’ That is a test that could easily be used to conclude that my husband, who is home, who is able- bodied (if tired), who loves his son, can simply continue to provide the informal support instead.

But here is what that test does not see: my husband is 55 years old. Our son is nearly 21. If informal support replaces funded support now, what happens in ten years? What happens when my husband is 65, or 70, or when his own health fails — as it will? The funded support system, and specifically the support worker relationships that have been built over years, represent the sustainable pathway for our son’s future. Destroying that infrastructure now to save money in the short term will produce a far greater crisis — and far greater cost — later.

The ‘informal supports first’ test, as currently drafted, does not account for carer age and sustainability. It does not account for the cumulative cost of full-time informal caring on a carer’s health. It does not account for families who have no extended network. And it does not account for the simple reality that my son is nearly 21 years old, and his father cannot — and should not have to — be his entire world.

Closing

I support the NDIS being placed on a sustainable footing. Our family’s future depends on the NDIS existing and functioning well for decades to come. We are not arguing against sustainability. We are arguing that the provisions in this Bill, as drafted, will produce harm — to our son, to families like ours, and ultimately to the broader community that benefits when people with disability are supported to participate fully in Australian life.

The social and civic participation of my son is not a lifestyle budget. It is the mechanism through which he is learning to communicate, building his health and physical capability, and finding his place in a community that — remarkably, beautifully — has chosen to include him. The events he attends, the bouldering gym where people know his name, the meals he is starting to learn to choose and prepare — these are the substance of an ordinary life. He deserves an ordinary life.

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