Submission 2148
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: A parent and primary carer Location: Regional NSW Capacity: Primary carer; parent of two children with active NDIS plans Date: 29 May 2026
1. Introduction and Family Context
I am a stay-at-home primary carer living in a regional community in NSW, approximately 80 kilometres from the nearest major service centre. My partner works full time. Both of my children have active NDIS plans. I am the day-to-day manager of our family’s engagement with the scheme: coordinating therapy appointments, managing plan reviews, maintaining provider relationships, attending school meetings, and carrying the administrative and practical load that comes with supporting two children with disability in a regional area with limited services.
I want to describe our family’s situation in some detail, because I believe it represents exactly the kind of family this Bill has not been tested against.
Both of my children are autistic. Their autism was undiagnosed for years. During that time, both developed severe separation anxiety — a direct consequence of unidentified and unsupported autism in a school environment that did not understand what it was dealing with. The separation anxiety drove extended and serious school refusal in both children, requiring psychological and medical intervention over a sustained period.
Because the early years of school were consumed by anxiety and refusal, both children missed the window in which children naturally form peer bonds. By the time they were stable enough to engage socially, the peer groups around them had already formed without them. Both children were, as a result, ostracised by their peers — not incidentally, but as a sustained pattern. This ostracism was disability-related. It arose directly from the social differences that autism produces and from years of absence and dysregulation that their peers did not understand.
Both children were enrolled in a small independent school specifically because of its therapeutic approach and smaller class sizes. That school was better than a mainstream setting in many respects. But it was not equipped for everything. My son’s autistic presentations were beyond what the school had the training or resources to manage. Rather than receiving the support he needed, he became labelled as the problem child. My daughter tried for five years — five years of consistent effort and presence — and was still not accepted by her peers at the end of it.
Both children have now moved to mainstream public schools. The move is not an admission of failure. It is a deliberate decision to give them access to a larger peer group — because a larger group means more chances to find connection, more social
Submission 2148
Diversity, and less intensity when dynamics turn. It is our best current option for helping them build the friendships they have not been able to form.
That move is only possible because of the NDS. Both children receive weekly occupational therapy and monthly psychology sessions. Paediatric appointments every two months, funded privately at our own expense because there is no NDIS pathway for that cost. The emotional regulation skills that occupational therapy is building are what make a mainstream school environment navigable for children who previously could not sustain school attendance at all. Without those sessions, the mainstream school move does not work. Without the NDIS, those sessions do not happen.
My decision to remain at home as a full-time carer rather than return to work was not straightforward. It carries a real personal cost — financial, professional, and emotional. But it is the right decision for my children at this stage of their development, and it is sustainable — barely, but sustainably — because the funded supports in their NDIS plans are doing what they are supposed to do. My children are getting the help they need. We are making progress.
We are now very likely to lose that access under this Bill. I am writing this because I want the Committee to understand what that would mean in practice — not as an abstraction, but for a specific family who fought a long and difficult process to get onto the NDIS and who are finally, carefully, making it work.
2. The NDS Access Process
Getting both children onto the NDIS was not straightforward. It was a long, complex cprocess requiring significant documentation, professional reports, and persistent advocacy. Families do not arrive at the NDIS easily. By the time a child has active plans, a family has already navigated diagnosis, specialist referrals, functional assessments, and an application process that assumes a level of organisational capacity and system literacy that many of the families who need the scheme most do not have.
We got there. But it was hard. The idea that families like ours are gaming a system for discretionary extras is not consistent with any part of our experience. The supports in my children’s plans exist because they were assessed as necessary by qualified professionals and approved through a formal process. They are being used. They are working. The prospect of losing them — through tighter access criteria, frozen plans,ministerial funding cuts, or an automated system that does not capture our circumstances — is not a theoretical concern. It is what this Bill makes likely.
3. Regional Access to Services
Living approximately 80 kilometres from the nearest major service centre has concrete consequences for our family’s access to disability supports. The pool of NDIS-registered providers in our area is small. When a provider leaves the region, closes their books, or reduces their service area, there is often no local alternative. We have experienced this. Waitlists for paediatric occupational therapy, psychology, and speech therapy in our area are long. We have waited months for services that families in metropolitan areas can access in weeks.
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Travel to appointments means taking children out of school, adding significant travel time to each session, and managing the dysregulation that disruption causes. For children with histories of school refusal, disrupting school attendance to attend therapy is not a neutral act. It is a careful, managed trade-off that we make every week.
Regional communities like ours often have higher than average proportions of families with children with disability and complex needs — in part because lower housing costs have drawn families who need services that are harder to access outside metropolitan areas. The service gap is real and documented. Any policy changes that reduce access to supports or restrict plan flexibility will fall disproportionately on communities like ours, where the formal support network is already thin and informal alternatives do not exist.
4. The Proposed Definition of Functional Capacity (Schedule 1, Part 1)
The Bill proposes assessing functional capacity without consideration of assistive technology, home modifications, support workers, or environmental and personal circumstances. The aim is a consistent, objective baseline of underlying need.
For autistic children, this approach creates a specific and serious problem.
Autism presents differently across environments. A child who is regulated and functioning in a structured home environment with a full-time carer and weekly therapy may appear, on a functional assessment, to be managing adequately. That assessment does not capture how the same child functions in a classroom, in a social situation, or in an unstructured environment without immediate support. It does not capture the preparation, decompression, and active management that makes the visible functioning possible.
Both of my children have moved from a small therapeutic school into mainstream public schools. Their current plans were developed in the context of the previous environment. Assessing functional capacity based on performance in a supported environment — without accounting for the environment that made that performance possible — does not reveal underlying need. It reveals need-under-optimal-conditions, which is a different thing entirely. For children now in less supported settings, a plan calibrated to the previous environment will be inadequate for where they actually are.
The Bill’s own provisions make this worse. Schedule 1, Part 6 requires the CEO to consider informal family supports before approving funded ones. But Part 1 explicitly excludes the contribution of other people from the functional capacity assessment. My children are assessed as if I do not exist as a support. Their plans are then reduced because I do. I ask the Committee to require the Government to explain how those two provisions are consistent.
5. Restrictions on Unscheduled Plan Reassessments (Schedule 1, Part 2)
The Bill proposes extending the reassessment response window from 21 to 90 days and restricting unscheduled reassessments to situations involving a significant and ongoing change in functional capacity that substantially reduces daily functioning.
Submission 2148
Both of my children are in new school environments that their current plans were not built for. The supports appropriate for a small therapeutic school are not the same as those required for a larger mainstream public school — particularly for autistic children whose school difficulties were serious enough to require medical and psychological intervention.
The early intervention principle in the NDIS Act is explicit: act before deterioration, because early action reduces long-term harm and cost. The reassessment threshold in this Bill requires proof of substantial deterioration before action is permitted. Those two principles directly contradict each other, and both are currently in the same Act.
For a child with a documented history of school refusal and severe separation anxiety, the trajectory from early warning signs to full crisis is not long and not easily reversed. The ability to act on early signs — to adjust a plan, increase a support, add a service — is what keeps a child in school. A 90-day response window and a deterioration threshold make proactive support structurally impossible.
In a regional area where waitlists are already long, 90 days is also not 90 days in practice. It is 90 days before a process begins that may itself take weeks. I ask the Committee to require the Government to demonstrate how this threshold is consistent with early intervention principles, and to introduce specific protections for autistic children undergoing school transitions or with histories of school refusal.
6. The ‘Arising Directly From’ Change (Schedule 1, Part 3)
The change from supports ‘arising from’ an impairment to supports ‘arising directly from’ an impairment is a single word. For autistic children, the consequences are not small.
Autism does not produce needs in isolation. It produces cascading effects — anxiety, emotional dysregulation, social communication difficulty, sensory sensitivity, executive function challenges — that interact with each other and with the environments a child moves through. My children receive occupational therapy for regulation and sensory processing, psychology for anxiety and social skills, and will be receiving speech therapy for communication. None of these needs arise from autism in a single, unbroken line. They arise from the interaction between autism and the demands of the world.
The Government has provided no definition of ‘directly’ and no guidance on how it will be applied — including whether it will be applied by a person or an algorithm. For a family whose children’s supports depend on the answer, that ambiguity is not acceptable. I ask the Committee to require binding guidance before this provision commences, with explicit protection for secondary and cascading effects of autism and related disabilities.
7. Ministerial Powers to Reduce Funding Categories (Schedule 1,
Part 4)
The Bill grants the Minister the power to reduce funding across entire support categories by legislative instrument, with no sunsetting, no individual assessment, and no parliamentary disallowance. The Bill states explicitly that this power applies even where a participant’s plan no longer covers the full cost of their reasonable and necessary supports.
Submission 2148
Reports indicate that community participation budgets are already scheduled to be cut by 50% and capacity building daily activities by 10% from October 2026. For autistic children who have been socially excluded for years, community participation is not a discretionary extra. It is a direct therapeutic objective — building the capacity to participate with peers in structured settings is part of what their plans are designed to achieve.
A ministerial determination reducing these categories does not assess whether my children’s specific needs have changed. It applies to everyone. For a family that fought a long process to access the scheme and is actively using the funded supports as intended — a blanket cut by ministerial decree, with no individual assessment and no parliamentary oversight, is not a sustainability measure. It is a removal of something that was assessed as necessary.
I ask the Committee to require sunsetting, parliamentary disallowance, and mandatory impact assessment before any such determination can take effect.
Automatic Plan Renewal Without Review (Schedule 1, Part 5)
Plans automatically renewed as identical copies, with unspent funds removed, will not reflect the current needs of either of my children. Both children’s plans were built for a school environment they have left. An automatic renewal is a document built for one reality, reissued for a different one, with no one having checked whether it still fits.
Unspent funds are not waste. They are the buffer that allows a family to respond to a change in need without waiting months for a formal process. In a regional area with long waitlists, removing that buffer removes the only margin a family has to act quickly when something changes.
Combined with a 90-day reassessment window and a threshold requiring substantial deterioration, automatic renewal at a frozen funding level means families in our situation have no practical mechanism to keep plans aligned with reality — until something has already gone seriously wrong.
Codification of Parental Responsibility (Schedule 1, Part 6)
The Bill defines what parents are legally expected to provide and instructs the CEO not to approve supports whose primary purpose is to reduce parental burden below what is reasonably expected.
I am a full-time carer. I left paid employment because the level of support my children require cannot be managed alongside full-time work. My partner works full time. Together we manage two autistic children with active NDIS plans, weekly and monthly therapy appointments for both, private paediatric appointments at our own expense, two school transitions, the daily management of anxiety and emotional regulation at home, and the ongoing work of helping two children build skills and connections that do not come easily to them.
Staying home carries a real personal cost. It is financially constraining. It affects my professional identity and my sense of independence. There are days when it is genuinely hard. I am not writing this to claim exceptional virtue. I am writing it because the decision is sustainable — if not comfortable — because my children are getting
Submission 2148
the help they need and making progress. The NDIS is what makes that progress possible.
The provision requiring the CEO to consider ‘the desirability of maintaining and strengthening informal supports rather than replacing them with funded ones’ treats what I provide as a resource the system can lean on more heavily. It does not ask what that costs, what our limits are, or what happens when we reach them.
Our children’s history of extended school refusal is a documented record of what our family looks like when the support system is inadequate. Both required professional intervention to stabilise. Without the NDIS, the most likely outcome for our family is homeschooling — not by choice, but because we will have no other option. Two autistic children who cannot access adequate support in a school setting, in a regional area with no funded support to draw on. That is where this Bill points us.
The Productivity Commission built the economic case for the NDIS on whole-of-government modelling: invest in formal supports now and avoid the far greater downstream costs of carer breakdown, lost workforce participation, and chronic reliance on crisis services. I ask the Committee to scrutinise whether this Bill is consistent with that rationale — and whether the projected savings figure accounts for what Centrelink, mental health services, hospitals, and school systems absorb when families like ours have no alternative left.
10. Automation and Accountability (Schedule 3)
The Bill provides for automated planning decisions, with methodology, data inputs, and appeal pathways left to ministerial instruments that Parliament cannot disallow.
Our family’s situation involves two autistic children with different presentations, overlapping and interacting support needs across multiple therapy disciplines, a regional context that affects service access, and a primary carer providing substantial daily support that the system does not measure. None of this is straightforward to model algorithmically.
Planning problems in the NDIS are not caused by too much human judgement. They are caused by inadequate human judgement — planners who are not trained, not resourced, and in some cases not reading the evidence placed before them. Replacing that with automation does not fix the problem. It scales it and removes accountability at the same time.
If an automated system produces an inadequate plan for one of my children, I cannot ask it why. I cannot point to what it missed. I am left with a 90-day wait and a threshold requiring substantial deterioration before anything can be done. For children with the histories mine have, that is not workable.
I ask the Committee to require full public disclosure of any automated planning methodology before it commences — including data inputs, error correction processes, and appeal pathways — in language accessible to participants and families.
11. Conclusion
Both of my children are autistic. Their autism went undiagnosed for years, during which time they developed severe separation anxiety that drove extended school refusal and
Submission 2148
caused them to miss the window in which peer bonds form. By the time they were stable enough to engage socially, they had been excluded. Both were ostracised — because of their disability — in the peer groups available to them. The small therapeutic school that was supposed to help did not have the resources to support my son’s presentations and did not protect my daughter from five years of social rejection.
They have now moved to mainstream public schools, with larger peer groups and more chances to find connection. That move is only possible because of weekly occupational therapy and monthly psychology funded through the NDIS, and private paediatric appointments we fund ourselves. It is working. Slowly, carefully, it is working.
We live in regional NSW, a significant distance from the nearest major service centre, with a limited provider pool and waitlists that do not move quickly. We fought a long and difficult process to access the NDIS. We are not on it by accident or convenience. We are on it because qualified professionals assessed our children, documented their needs, and a formal process determined those needs were real.
This Bill — through tighter functional capacity assessments stripped of environmental context, reassessment thresholds that require deterioration before action, auto-renewed plans that no longer fit our children’s circumstances, scheduled 50% cuts to community participation funding, unchecked ministerial power over support categories, and greater legal reliance on informal carer support from a family already at capacity — will in all likelihood remove our access to the scheme or reduce it to the point where it no longer functions for us.
Without NDIS support, we will be another family forced into homeschooling because we have no other option. Two autistic children. A regional community. No funded support. No alternative.
I support a sustainable NDIS. I support fraud prevention. I am asking the Committee to ensure that sustainability is not built on the backs of families who need the scheme most, who accessed it legitimately, and who are using it exactly as it was intended.
The NDIS gave my family a door. Please do not close it.
Thank you for the opportunity to make this submission.
A parent and primary carer Regional NSW 29 May 2026