SUBMISSION: National Disability Insurance Scheme Amendment (Securing the
NDIS for Future Generations) Bill 2026
Submitted by: , Parent and Primary Carer Date: 01/06/2026
Location: Regional Victoria
INTRODUCTION
I am writing this submission as a mother, a primary carer, and a person whose life has been irrevocably shaped by caring for my son within the National Disability Insurance Scheme (NDIS). I am not writing in opposition to the goal of a sustainable NDIS. I am writing because this Bill, as proposed, contains provisions that would — in very concrete and foreseeable ways — remove supports that are keeping my son alive in the world, and keeping my family intact.
I ask the committee to read this submission as a detailed account of what life looks like for a family with a child of complex, high, and behaviourally intensive needs — and to consider whether the provisions outlined in this Bill have been tested against that reality.
ABOUT MY SON
My son is seven years old. He is autistic and nonverbal. He has not been able to transition to school. He experiences significant sensory intolerances, including an inability to tolerate movement and sound while travelling in a vehicle for more than ten minutes, during which he will injure himself. For much of his early childhood, he was unable to tolerate the presence of other people without becoming physically aggressive and violent — not as a matter of behaviour in the ordinary sense, but as a direct and involuntary expression of his disability and the neurological distress it causes him.
For the past three years, our family has been engaged in intensive early intervention, consistent with current internationally accepted best-practice standards for children with his profile. This work is slow, painstaking, and takes place entirely within our home, because that is the only environment in which it is safe and possible.
THE PROGRESS WE HAVE MADE — AND WHAT IT HAS COST US
Three years ago, we could not safely have another person in our home. My son could not tolerate proximity to unfamiliar people. There was no functional communication. There was no pathway we could see.
Today, because of the NDIS supports currently in place, we have a small team of skilled practitioners working alongside our family. They are supporting my son to communicate at a very basic level. They are helping us learn to de-escalate him safely. They are assisting with his personal care. For the first time in years, my husband and I are beginning to experience something that resembles being his parents, rather than simply his crisis responders.
This progress has come at a profound personal cost. Both my husband and I have developed life-limiting illnesses as a direct consequence of the sustained stress of navigating this system and caring for our son without adequate support for much of that time. I have lost my ability to drive, due to a health condition directly attributable to caregiver stress. I cannot transport my son to services. He cannot safely travel to them. We are entirely dependent on support coming to us.
We are not asking for luxury. We are asking to survive.
CONCERNS WITH SPECIFIC PROVISIONS OF THE BILL
Schedule 1, Part 1 — Defining Functional Capacity
The Bill proposes that access to the NDIS be determined on the basis of “substantially reduced functional capacity,” assessed through a consistent, objective framework informed by a Technical Advisory Group.
I am deeply concerned that standardised functional capacity assessments will fail to capture the lived profile of children like my son. His impairments are not visible on a checklist. His inability to tolerate travel, to be assessed in an unfamiliar environment, or to engage with an unknown assessor will itself impede the assessment process — and may paradoxically lead to an underestimate of his needs. Any framework that does not account for assessment accessibility for profoundly complex children risks systematically excluding those with the highest need.
Schedule 1, Part 3 — Strengthen Link Between Impairment and Need for Support
The Bill clarifies that supports will only be funded where the need arises directly from the impairment for which the participant met access criteria.
My son’s impairment is autism. His needs — including support for personal care, communication, behavioural de-escalation, and in-home therapeutic intervention — arise directly from that impairment. However, I am concerned that this provision, as applied in practice, could be used to narrow what is considered “directly linked.” The work of building therapeutic relationships with support workers, which has taken three years and is the foundation of every other gain, must be understood as directly disability-related, not incidental. This provision must be implemented with clinical rigour and an understanding of what intensive early intervention actually requires.
Schedule 1, Part 4 — Support Determinations
This provision enables the Commonwealth Minister to make determinations to reduce funding for groups of supports, specifically including “social, civic and community participation and capacity building daily activities.”
This provision is, in my view, among the most dangerous in the Bill for families like mine. My son’s entire intervention programme is built around capacity building. The work his support
team does — teaching him to communicate, to tolerate proximity, to manage his distress — is precisely the category of support this provision targets for potential funding reduction. These are not optional enrichment activities. They are the mechanism by which he is slowly developing the capacity to one day participate in the world. Ministerial discretion to reduce this category of funding, without individual assessment or appeal, is a mechanism for harm that may not be visible in aggregate data but will be catastrophic in individual lives.
Schedule 1, Part 5 — Plan Renewal and Unspent Funds
The Bill proposes that unspent funds from a participant’s plan will not be carried over to the renewed plan.
For a child like my son, plan underspend is not evidence of unmet need. It is evidence of the unpredictable and fluctuating nature of his disability. There are weeks where no support worker can safely be in the home. There are periods of regression where planned activities cannot proceed. Penalising families by withdrawing unspent funds at plan renewal will create a perverse incentive to spend funds on supports that are not yet appropriate, or will result in reduced budgets at renewal based on apparent underspend that does not reflect actual need.
Schedule 1, Part 6 — Reasonable and Necessary Supports
The Bill requires the NDIA to consider “Scheme sustainability and equity across NDIS participants, including participants with similar needs and circumstances” when determining what supports are reasonable and necessary to fund.
I understand the intent. However, I am concerned that embedding cost-containment as a statutory factor in determining reasonable and necessary supports will, in practice, result in the needs of the most complex participants being weighed against Scheme-wide cost pressures. My son’s needs are not comparable to those of most participants. He requires intensive, individualised, in-home support. No comparison with average participants will serve him well. Individual clinical need must remain the primary consideration, not equity of spend across a population.
Schedule 1, Part 8 — Tightening the Meaning of Permanence
The Bill proposes that access will only be granted — or maintained — where all appropriate treatment has been undertaken and no further treatment is likely to materially improve the impact of the impairment.
This provision creates a dangerous paradox for children currently engaged in intensive early intervention. My son is making progress — slowly, but measurably. Under a strict reading of this provision, the fact that treatment is improving his functioning could be used to argue that his impairment does not yet meet permanence criteria, potentially placing his continued NDIS eligibility at risk. It could also be interpreted to mean that, because intervention is effective, he no longer requires NDIS support at current levels. Either outcome would be
catastrophic. The permanence provisions must explicitly and unambiguously protect children engaged in active, evidence-based early intervention.
Schedule 3, Part 2 — Automation of Administrative Action
I am deeply concerned by the proposal to automate specific NDIS administrative actions. Together with the standardised assessment framework proposed under Schedule 4, these provisions risk replacing individual clinical judgement with systems that cannot, by their nature, meet a person where they are.
Disability is not a category. It is a lived experience that is unique to each person. My son’s functional profile — the way his autism manifests in his body, in his sensory system, in his relationship to sound and movement and proximity — is not reducible to a standardised instrument. No automated process, and no assessment tool designed for a general population, will capture what it is like to live in his body every single day.
Automated systems are, by design, built around what is common and predictable. My son is neither. He falls outside the standard distribution on almost every metric used to assess disability-related need. A system designed for the majority will not see him. It will process him — and in doing so, will miss the very things that make his support needs what they are.
This is not a technical objection. It is a fundamental one. When the decision about what supports a profoundly complex child receives is made by an automated process rather than a skilled human who understands his individual presentation, the risk is not inefficiency. The risk is that he loses access to supports that are keeping him safe, keeping him progressing, and keeping open the possibility of a life with meaning and growing independence.
A system that processes my son without seeing him is not a reformed NDIS. It is a system that has decided, in advance, that children like him are too hard to assess individually — and that the cost of getting it wrong will be borne by him and his family, not by the system that failed him.
Schedule 4 — New Framework Planning (from 1 April 2027)
The Bill proposes that support budgets will be determined through a support needs assessment process, with rules governing what assessors must and must not consider.
For my son, the critical question is: who will conduct this assessment, under what conditions, and with what understanding of how his disability presents? He cannot travel to an assessment location. He cannot engage with an unknown assessor in a standard way. If the assessment framework does not require home-based assessment for participants with profound sensory and behavioural complexity, the resulting budget will not reflect his genuine support needs, and his plan will be inadequate before it begins.
THE THRIVING KIDS PROGRAM — A REGIONAL IMPOSSIBILITY
I am aware that associated reforms propose the redirection of children with disability to the Thriving Kids program as part of early childhood support reform. I want to be explicit about what that would mean for my son.
He lives regionally. He cannot travel in a car for more than ten minutes without injuring himself. I cannot drive. There is no local service hub within accessible reach. A programme premised on children being transported to or attending services — however well designed — is, for my son, not a programme at all. It is an absence of support dressed in a different name.
More significantly, my son’s behaviours — which are a direct expression of his disability and not a character failing — are too risky and potentially harmful to others for him to be placed in a group or centre-based setting. He would be screened out. He would be left with nothing. And the window for early intervention, which is already narrow, would close.
If he were transitioned to such a programme, he would not be thriving. He would remain at home, isolated, without the practitioners who have — painstakingly, over three years — begun to earn his trust and build his capacity. The therapeutic relationships that underpin every aspect of his progress would be severed. For a child whose greatest disability is his inability to tolerate unfamiliar people, the loss of known and trusted support workers is not an inconvenience. It is a clinical crisis.
THE HOPE — AND WHAT STANDS IN ITS WAY
I want to be clear about what I am fighting for. I am not asking the government to fund my son’s dependence indefinitely. I am asking it to fund the possibility of his independence.
With consistent, individualised, in-home support — delivered by people he knows and trusts, built up painstakingly over years — my son has a genuine chance of building capacity that reduces his long-term reliance on high-cost, high-intensity supports. That is the entire purpose of the early intervention model we are following. It is slow. It is not linear. But it is working.
Without it, the trajectory is clear. I have seen it in my own family. My son would grow into an adult whose behaviours are entrenched, whose world is small, and whose care would require full-time supported accommodation at a cost far exceeding what is invested in him today. That outcome is not inevitable. But it becomes inevitable the moment individualised support is withdrawn and replaced with a model he cannot physically access and would not be accepted into.
THE COST OF NOT INTERVENING — A PERSONAL AND ECONOMIC ACCOUNT
I am not speaking about the value of early intervention in the abstract. I have watched its absence play out in my own family, across two generations.
I have two sisters. Both of them have children with disabilities very similar in profile to my son. Both of them raised those children without access to early intervention. Both of them
now live with life-limiting health conditions, directly attributable to years of sleeplessness and the unrelenting physical and emotional demands of caring for children with complex, high needs disability without adequate support.
Their children are now in their late teens. Both are living in supported accommodation. The annual cost of their care exceeds $600,000 per person, per year — funded by government.
I watched my sisters lose their health. I watched their children grow up without the foundational supports that might have built their capacity to live with greater independence. I am now watching the same trajectory begin in my own life, and I am fighting — with everything I have — to change its course for my son.
This is not a hypothetical. This is what the absence of intensive early intervention produces over time: adults with profound and entrenched support needs, at extraordinary long-term cost to the public — and families destroyed by decades of inadequate support.
The supports my son currently receives through the NDIS are not a luxury expenditure. They are an investment — in his capacity, in his future, and in the likelihood that he will one day require substantially less support than he does today. Every provision in this Bill that restricts, reduces or redirects early intervention funding for children like him is, in the longer view, not a saving. It is a deferral of far greater cost — human and financial — to a later point when intervention is no longer possible.
I urge the committee to weigh not only the immediate cost of the supports being targeted by this legislation, but the long-term cost of their removal. The evidence is sitting in my family’s history. It is sitting in the current supported-living invoices for my nephews and nieces. It is, right now, sitting in my son’s bedroom in regional Victoria — where, for the first time, he is slowly learning to trust the world around him.
That is worth protecting. The alternative is not cheaper. It is simply paid later, by everyone.
THE IMPACT ON CARERS
I want to state plainly what is rarely said in policy submissions: the NDIS, when it functions as intended, does not only support the person with disability. It supports the entire family system around that person.
My husband and I are both ill. We are depleted. We are only now, with the supports currently in place, beginning to stabilise. The NDIS supports our son receives are also, directly and indirectly, what is keeping us capable of caring for him.
If those supports are reduced, redirected to a programme he cannot access, or lost through plan renewal changes that do not account for fluctuating need, there is no safety net for our family. There is no community infrastructure in our region that will absorb the gap. There is no informal support network that has survived the past seven years intact.
WHAT I AM ASKING
I ask the committee to ensure the following before progressing this legislation:
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That any functional capacity assessment framework explicitly accounts for participants who cannot access standard assessment processes due to their disability, and requires home-based assessment where indicated.
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That Schedule 1, Part 4 determinations on capacity building and community participation supports cannot be applied without individual clinical review, and that children engaged in active intensive early intervention are explicitly protected.
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That the plan renewal provisions in Schedule 1, Part 5 include a mechanism for accounting for clinically justified underspend in the context of fluctuating and unpredictable support needs.
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That the permanence provisions in Schedule 1, Part 8 are drafted so that children actively engaged in evidence-based early intervention are unambiguously protected from loss of eligibility based on measurable progress.
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That the new framework planning provisions in Schedule 4 require home-based support needs assessments to be available to all participants for whom travel or unfamiliar environments are contraindicated by their disability.
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That any alternative programme to the NDIS for children — including Thriving Kids — is required to demonstrate genuine geographic accessibility for regional and remote families, and the capacity to safely accommodate children whose behaviours pose a risk to others, before any transition of such participants is authorised.
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That the health and wellbeing of primary carers is formally recognised within the NDIS framework as inseparable from the outcomes of the people they care for.
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That Schedule 3, Part 2 automation provisions explicitly exclude decisions about individual participant support levels and plan adequacy from automated processes, and that all such decisions retain mandatory human clinical review — particularly for participants with complex, behaviourally intensive, or atypical disability profiles.
CONCLUSION
My son is seven years old. He is making progress. Slowly, quietly, in our home, with the right people around him, he is beginning to communicate. He is beginning to trust. He is beginning to become part of our family in a way that felt impossible three years ago.
That progress is fragile. It is entirely dependent on the supports currently funded through the NDIS. It cannot be replicated by a programme he cannot access, in a location he cannot reach, delivered by people he does not know.
Several provisions of this Bill — individually and in combination — place that progress in direct jeopardy. I am not asking the committee to abandon reform. I am asking you to look at what is actually happening in homes like mine, and to ask yourselves whether the provisions of this Bill, as drafted, have been tested against that reality.
They have not. I am asking you to test them now.
Respectfully submitted,
Regional Victoria
01/06/2026