High-masking daughter's functional capacity assessments and parental responsibility (Family or carer experience) | External submission

Submission 2845

Submission to the Inquiry into the National Disability Insurance

Scheme Amendment (Securing the NDIS for Future Generations) Bill

2026

SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

To: Senate Community Affairs Legislation Committee

Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Summary of Position

My family is two parents and two neurodivergent children. My son is 14, with Autism Spectrum Disorder Level 3 and an intellectual impairment, and he is an NDIS participant. My daughter is 13, with ASD Level 2 and ADHD, and she is not on the NDIS. I have a formal ADHD diagnosis, and my long-term psychologist places me at autism Level 1 to 2 with high masking.

I am not opposed to every part of this Bill. There are intentions in it I support in principle, and I will come to those. Several other parts, however, will cause direct and measurable harm to families like ours, and I am asking the Committee to recommend against passage of the Bill in its current form, with particular concern about:

The proposed 50% reduction in social, civic and community participation funding, alongside a 10% cut to capacity-building daily-activity budgets.
Mandatory provider registration as currently framed.
The expansion of assessment-driven and check-in-driven funding, which has already cost my family $30,000 in support.
The proposed redefinition of “permanence”, under which applicants would be expected to try all “available” treatments, including those they cannot afford, that they cannot safely take, or that are not delivered in their area, before being considered eligible.
1. The likely failure of the new functional capacity assessments to reach high-masking children like my

daughter.

The use of “parental responsibility” to deny support for care that goes far beyond what any parent of a same- age child provides.
The absence of any right for families to see the information the Agency holds, and relies on, when it makes decisions about their child.

A participant population already taught to be afraid of the system is now being asked to absorb changes most of us do not properly understand.

I explain each below, drawing on our family’s experience.

Submission 2845

Clause index

The Bill clauses cited in this submission are listed below, with the section of this submission that discusses each. Section numbers refer to this submission, not the Bill.

CLAUSE            WHAT IT COVERS                                                    DISCUSSED IN

s 9B                      functional capacity test                                                       Section 4

s 10C                     definition of NDIS provider                                                    Section 2

s 17B                      sustainability principles                                                       Section 5

s 25A                permanence test for access                                                   Section 4

s 32K                    level-of-need funding bands (Schedule 4)                                      Section 1

s 33(2EA) & (2EB)       caps on intensity and worker-to-participant ratio                               Section 1

s 34A                   support-reduction determination                                             Section 1, 3

s 34(1J)                   children's supports tied to "reasonable parental responsibility"                 Section 6

s 48A & s 48(3)         reassessment restrictions                                                     Section 3

Schedule 2, Pts 5-6     mandatory registration, claim windows, plan-management transition            Section 2

Submission 2845

Cutting community participation by 50%, and capacity building by 10%, will undo the work that keeps our son out of crisis

IN SHORT

Halving community-participation funding and cutting capacity-building will undo the support that keeps my son out of crisis. The savings are an illusion; the costs come back as hospital admissions, carer burnout and lost work.

Relates to: s 32K, s 33(2EA) and (2EB), s 34A.

My son is 14. He has Autism Spectrum Disorder Level 3 and an intellectual impairment, and he is an NDIS participant. Community-participation support is the reason he has a life aside from school outside the walls of

our home, and the reason our family  is not in  crisis right now. Our current support worker  is a small

independent business. She is the reason we climbed out of a very dark period a few years ago, and the reason we are now able to be active in our community as a family.

If community-participation funding is halved, the support that has kept my son engaged with the world will not survive. His NDIS plan goal, written into his current plan, is “to live as independently as possible as an adult”. Our long-term hope is that when the time comes, he can move into a supported living arrangement rather than an institutional facility. Reaching that future requires him to keep building skills and relationships in his community now. Cut his community participation in half, and that future moves further out of reach.

The Bill also proposes a 10% cut to capacity-building daily-activity budgets. That funding pays for the therapy and skill-building work, with his occupational therapist and others, that turns his community-participation hours into actual learning. Cutting both at once means cutting the activity and the work that gives the activity any value. We

should expect regression, not savings. Whatever the  Bill claims to save on paper  will come back to the

Commonwealth as bills paid somewhere else: hospital admissions, carer burnout, parents leaving the workforce, family breakdown.

The Department’s own framing acknowledges that the cuts will fall hardest on those who currently use these supports most. For my son, that means us.

Submission 2845

Mandatory provider registration would force our family back to the providers that have already failed us

IN SHORT

Mandatory registration would force out the small independent worker we rely on and push us back to the large providers that already failed my son. Self-management only works with real provider choice.

Relates to: s 10C (definition of NDIS provider), Schedule 2 Parts 5-6 (mandatory registration, claim windows, plan management transition).

This is the part of the Bill I most want the Committee to look at carefully. It looks small on paper, and it has the largest impact on the ground.

Even participants whose total plan funding does not change under the new model, like my son, will be materially worse off if they can only spend that funding with registered providers. We have been there. Before our current support worker, we have used one of the larger registered providers. The staff had high turnover, were often on their phones rather than working with our son, and were not the people he needed in his life. The reason we are stable now is precisely because we are self-managed and have been able to choose a small independent worker who is the right fit for him. Our most recent Functional Capacity Assessment documents this worker, and the continuity of our relationship with her, as central to my son’s daily regulation.

We met with another of the larger providers, who proposed a residential camp for our son along with ongoing support workers. The camp alone would have cost in the order of tens of thousands of dollars for a single week, a majority share of his annual funding, with no continuity of worker across the week. That one week would have left him with little to no support for the rest of the year, in the care of people who did not know him and who he may not listen to or trust. He has very little communication ability, so while he was away we would have had no real updates and very little sleep.

The same provider’s model would have worked with our son on his own, away from our family. When we questioned being shut out of his support, the reason we were given was “confusion over who was in charge.” Our son struggles to generalise a skill from one setting to another, so support delivered away from us does not carry back into our home or the community. When a support worker is with us as a family, we learn how to support him ourselves, and we can actually leave the house together.

We did not go ahead. It was too much funding for too little, and what was proposed would have worked against his goals and put him in danger. A model that takes him away from us to be supported gives us none of what actually helps.

Mandatory registration as proposed will not be survivable for many small independent operators. The administrative and cost requirements will force them out of the sector. Families like ours will then be pushed back to the very providers we left, regardless of what our plan dollars say on paper. Self-management depends on real provider choice to find the right fit instead of being seen as “too difficult” and being left out in the cold. If small independent operators are forced out by registration requirements, families lose that choice, and what remains is another form of consolidation. Small businesses are what keep our country going, and in disability support they are what keep families like mine afloat.

I am asking the Committee to amend the Bill so that a genuine pathway for unregistered providers under self managed plans is preserved.

Submission 2845

The Bill formalises the very check-in mechanism that has already harmed my family

IN SHORT

In 2022 we were honest at a check-in and our son’s plan was cut by $30,000. The Bill expands the same mechanism with no safeguard against punishing honesty, and the fear it leaves behind is its own harm.

Relates to: s 48A and s 48(3) (reassessment restrictions), s 34A (support-reduction determination).

In 2022, during a routine NDIS check-in call, my husband and I were honest about the fact that we were both in deep depression and badly burnt out. My husband is autistic, and what we were living through was autistic burnout and depletion, the exhaustion that builds over years of caring without a break rather than a passing low patch. We disclosed because the check-in was asking, and because we believed honesty would lead to more support, not less. The plan that came through that October cut my son’s funding by $30,000.

We were never told the reasons for the cut on the record. Part of the picture was underutilisation, because our previous plan was not fully spent. We had not stopped needing the support. We told them at that meeting exactly why it had not been spent: we could not find a support worker who was the right fit for our son, because good support workers for a child with complex needs are extraordinarily scarce and take time to find. They knew the need had not gone away. On that same call we were also honest about being burnt out. We cannot prove that our honesty about our own health counted against us, and it was never named. We cannot rule it out either, and that is the harm in itself. The Bill’s provider-side changes will deepen the very workforce scarcity that produced our underutilisation in the first place. A plan that cannot be spent, because there is no one to spend it on, becomes the evidence for the next round of cuts. It is hard not to wonder whether that is the point.

We have been too afraid to be open with the NDIS since. Every plan-renewal cycle now brings real anxiety into our household, because the lesson the system taught us is clear. Telling the truth about our family’s mental health is something the system punishes.

There  is a second concern with the way the  Bill expands assessment-driven funding. An assessor sees a

participant on a single day, often for a single hour. They cannot see the week leading up to that hour, the recovery that follows it, or the modifications a family has built into their entire life to keep stable enough to walk into that meeting. A child like my son can present, on a good day, as far more capable than he is on the four out of five days that come before and after. If a single snapshot can decide his funding, our family is one good day away from losing the support that took years to build. No assessor can spend the weeks with a family that would be needed to see functional capacity in context.

The Bill moves further into assessment-driven and check-in-driven funding. Unless it is amended to include explicit safeguards against punitive plan reductions following honest disclosure, more families will learn the lesson we did. The system cannot ask families to be honest at check-ins and at the same time use that honesty against them.

Submission 2845

The permanence redefinition and the new assessment regime will not reach families like ours

IN SHORT

The “available treatments” test and the new assessments will not reach families like ours. They ignore affordability, medical safety and geography, and they miss high-masking children the same way clinicians have always missed high-masking adults.

Relates to: s 9B (functional capacity test), s 25A (permanence test for access).

The Bill proposes a redefinition of “permanence” under which applicants must try all “available” treatments before they are considered eligible for the NDIS, with treatments counted as “available” even when they are unaffordable or not delivered in the applicant’s area.

For my daughter, who is 13 and has ASD Level 2 and ADHD, this would not be a higher standard of eligibility. It would mean no eligibility at all. We live in an outer-Brisbane postcode without easy access to autism-trained specialists, and we have already spent everything we have on supporting her brother. The “available treatments” she would be required to exhaust are not, in practice, available to us.

There are also participants for whom “try all available treatments” is not just an administrative obstacle but a medical safety problem. My son cannot safely take most pain medications or flu medications. He also presents with the features of Avoidant Restrictive Food Intake Disorder. It is not formally diagnosed in either of our children, but it is very present in the daily reality of our household. If a treatment pathway required us to change his diet, the result would not be improvement. It would be a further reduction in the already very limited range of foods he is able to eat. We have seen this happen in the past. “Available” treatments are not safely available for many participants, and a regime that pretends otherwise will harm the people it claims to support.

The redefinition matters for my son in another way too, even though he is already in the Scheme. His Level 3 autism and his intellectual impairment are not things we are trying to cure out of him. They are who he is. A framework that treats permanence as something a participant can erode by trying enough treatments treats permanent disability as a problem the participant should solve. From inside a household with a permanently disabled child, that framework is both wrong and exhausting. The permanence we live with is not provisional.

The Bill’s new functional capacity assessments should be intended to open the Scheme to people who have been wrongly excluded, and I support that intent in principle. In practice, I do not believe they will reach the families they claim to help, including my daughter.

I speak to this from personal experience as well as a parent’s. I have a formal ADHD diagnosis. When I pursued an autism assessment, I tested borderline. My long-term psychologist, who knows me well, places me at autism Level 1 to 2 and has said it took her six months of a working relationship before the masking came down enough for her to recognise it. I later saw a psychiatrist, on a single visit, who ruled out autism on the basis that I make eye contact and demonstrate empathy.

That kind of judgement is not clinical assessment, it is the same stereotype that has dismissed high-masking adults like me for decades, and it has not gone away. If a psychiatrist can do this with an adult in 2025, the assessment workforce delivering the Bill’s new functional capacity tools will do the same thing with children like my daughter who present similarly. The reform on paper will not, in practice, reach the kids the Bill says it is for.

The gatekeeping cuts in both directions. People like me, with high-masking presentations and lower support needs than my son’s, are routinely told the Scheme is not for us. We may not need hundreds of hours of one-to one support each year, but many of us would benefit from a small amount of accommodation that is more than the current Medicare MH plans accommodate. With that, we could give substantially more back to the community. Through tax. Through paid work we can sustain. Through caring labour for our own families and for other families who need it. The current and proposed regimes leave that productive return on the table. A

Submission 2845

scheme that recognised low-support-need neurodivergence with proportionate accommodation would pay for itself many times over.

I want to mention one more nuance, because I want the Committee to understand I have thought about this carefully. Some participants, including my son, are genuinely difficult to assess and treat for additional conditions. He is suspected to have ADHD on top of his autism and intellectual impairment, but the layered complexity of his presentation makes formal assessment for additional conditions practically impossible. In one sense, I am open to a regime that weighs functional capacity more heavily than formal diagnosis. For participants like my son, a formal diagnosis is not always achievable. What I do not trust is this Bill’s motive. The pattern of the rest of the Bill, with cuts and registration changes that narrow rather than widen, makes me expect this shift will be used to exclude people from the Scheme rather than to bring more of them in.

Submission 2845

Our family’s adaptations, the FCA findings, and why we have not submitted them

IN SHORT

We look stable only because we have rebuilt our whole life around our son. Our own assessment shows need well above his current plan, and we are too afraid to submit it because of how the Agency has read our evidence before.

Relates to: s 17B (sustainability principles).

Looking stable is not the same as being low-need. Our family looks stable because we have worked enormously hard to get here. Our family does not arrive at “High Risk of Burnout” from a normal baseline. We arrive there after rebuilding our entire lifestyle to manage stress for everyone in it. Our adaptations are the reason the clinical findings I am about to share are not even worse. They are also why we cannot absorb further cuts. The shock absorbers are already gone.

Our adaptations did not start recently either. In May 2015, when my son was four and newly diagnosed with autism, we sold the forever home we had just finished building in Sydney and moved interstate to outer Brisbane so that he could access an intensive early intervention program that did not exist where we lived. The NDIS, as it then operated, did not cover the program. The proceeds of the house, alongside significant credit card debt taken on at the time, funded the move. That decade set the financial trajectory we have been living within ever since.

Both my husband and I have built or restructured our working lives around our son. Neither of us holds a conventional full-time role. The caring load our son’s needs place on our household makes that impossible, and the alternative would be one of us leaving paid work entirely. Like many participant families, we have built businesses we can run from home so that we can be present when our children need us. That arrangement keeps us afloat. It also caps what we earn.

We recently completed a comprehensive Functional Capacity Assessment with our long-term occupational therapist, supported by standardised adaptive-behaviour, sensory, and executive-functioning assessments. The findings the Committee should know about are these:

Both my husband and I returned “High Burden, High Risk of Burnout” results on the standardised carer burden assessment. The report explicitly notes “risk of carer fatigue and potential care relinquishment due to lack of supports”.

The recommended support package is well above what my son’s current rolled-over plan provides.

The report states my son “relies heavily on constant adult co-regulation, primarily from his parents and his support worker, to implement any calming or coping strategies. Without this external support, he is unable to manage even low-level distress”. His support worker is the same small independent provider I described in Section 2.

The OT  finds  that  "his  substantial support needs go  excessively above and beyond the parental

responsibility of a typical 14-year-old“.

The report notes my son “just recently developed the skills to be able to receive a professional haircut at a local barber” after consistent work. That milestone took years of community-based support to reach.

A further form of waste sits in plain sight inside the assessment process itself. Families are routinely required to obtain specialist reports to justify items the NDIS could fund, where the cost of the report is often more than the cost of the item it justifies. A clinician’s letter to confirm that a specific piece of assistive equipment is related to a participant’s disability can cost more than the equipment itself. The system pays for the paperwork regardless of

Submission 2845

whether the item is then approved. Genuine sustainability would address this by trusting the clinicians who already know participants, rather than requiring fresh evidence every cycle.

Despite all of this, we have made the deliberate choice not to submit the FCA in this year’s plan cycle. We projected that my son’s rolled-over plan will just cover this year. If we submitted the assessment now and the Agency interpreted it the way they did in 2022, by reducing rather than expanding his plan, the gap would close on us mid-year. We will submit it at the October 2026 plan renewal, when we will have no choice but to.

I am aware this sits awkwardly next to my asking the Agency to be open with us. They are the same fear from two directions. We hold back our own evidence because we cannot see how the Agency will use it, what it already records about our son, or how those records shape its decisions. Open records, of the kind I ask for later in this submission, are what would let families like ours stop hiding the very documents that prove how much our children need.

I would like the Committee to sit with that. A family in our position should be able to bring up-to-date clinical evidence to the NDIA and have it used to support the participant. Instead, we are holding back evidence of clear unmet need because we cannot trust the system to read it without using it against us. A scheme that produces that response from the families inside it is not a sustainable one, regardless of what the Bill is called.

Submission 2845

Parental responsibility is being used to deny the support our son needs

IN SHORT

The care we give goes far past what any parent of a 14-year-old provides. It is constant, physical and lifelong. Treating it as ordinary parenting is how the system denies the support he needs.

Relates to: s 34(1J) (children’s supports tied to “reasonable parental responsibility”).

I want to speak directly to the idea of parental responsibility, because it is used against families like ours. When the NDIA decides what to fund, it weighs what a parent would ordinarily do for a child of the same age, and treats whatever falls inside that line as ours to carry alone. Our son’s needs sit nowhere near that line. A typical fourteen-year-old looks after his own body and his own safety without a parent in the room. Our son cannot. What we do for him goes far past parenting. It is constant, physical work that does not ease as he grows, because his disability is permanent. The years that wear most parents down eventually end. Ours will not. We will be doing this for as long as we are physically and mentally able to, and we are also expected to work out how he will be cared for long after we are gone. Being told that this is simply what any parent does is both wrong and an insult to the work it takes to keep him safe and well.

I want to be specific about what “above and beyond parental responsibility” actually means in our home. It means daily personal-care tasks that most parents stop doing when their child is small, that we have not stopped doing at fourteen. It means knowing where my son is, physically, at every waking minute, while also working, also caring for our younger child, also keeping the household running, and through school holidays without a break. Several years ago, while we were home, our son got out of our yard. My husband called the police while we searched on foot with our neighbours. He was found 1.8 kilometres from our home, about to cross a major road. I honestly thought we had lost him. To supervise him safely and give him some autonomy, we have installed cameras and locks throughout our house. We are aware that some of the larger support services, and the NDIS itself, are uncomfortable with this. It is what allows us to be in two rooms at once, gives him time alone, and it is what keeps our son safe. We are also expected to do the skill-practice work between his formal therapies, and to cover the medical and allied-health costs the NDIS does not, with Medicare only partially helping. The hours a support worker is with him are not the hours we relax. They are the hours we use to catch up on paid work we cannot do while he is in our direct line of sight.

Submission 2845

The wider context

IN SHORT

Cuts do not save money, they shift it. The NDIA’s own data shows growth already slowing and fraud controls already working, so the case for drastic structural cuts does not hold.

My submission is grounded in our family’s experience, but the wider picture also belongs on the record.

The NDIS returns approximately $2.25 to the broader economy for every $1 spent, with a total benefit of $52 billion in 2020-21 according to Per Capita modelling. Cuts to supports do not actually save money. They move the costs into hospitals, onto unpaid carers, and into participants who end up in institutional or emergency care.

The NDIA itself spent $34.8 million on Administrative Appeals Tribunal matters in 2020-21, with more than $17 million paid to private law firms to fight participants. If sustainability is the genuine goal of this Bill, that is a more honest place to begin than community-participation funding.

Recent NDIA data published in the Q3 2025-26 quarterly report shows that scheme expense growth has already begun to slow without the legislative cuts proposed in this Bill. Twelve-month expense growth fell from 11.8% in the year to March 2025 to 11.3% in the year to March 2026. Plan inflation more than halved over the same period, from 11% in the March 2025 quarter to 5.9% in the March 2026 quarter. The same report shows family outcomes improving with NDIS support: families and carers reporting paid employment have increased from 47% at baseline to 53% at latest reassessment. The Agency’s anti-fraud apparatus is already active and producing results: more than 2,500 problematic providers have been removed since 2022, and more than $53.5 million in high-risk claims were reviewed prior to payment in the March 2026 quarter alone, with two-thirds of them rejected. The case for drastic structural cuts to participant supports does not rest comfortably on this data.

When the NDIS was first rolled out in New South Wales, state-funded local programs were closed because the new Scheme was supposed to cover them. It did not fully cover them, and those programs have not come back. This Bill carries the same risk on a larger scale: providers exit the sector, services thin out, and what is lost is not replaced.

The larger waste, in our experience as a participant family, is bureaucratic. Paperwork, review cycles, internal NDIA processes, and the costs of fighting participants at tribunal are very large relative to what is spent on the supports they govern. If sustainability is genuinely the concern, the work should focus there, not on participants and the small workforce around them.

Submission 2845

Recommendations to the Committee

I am asking the Committee to:

Recommend against passage of the Bill in its current form.
Recommend the removal of the proposed reductions to social, civic and community participation budget allocations and capacity-building daily-activity budget allocations. If the Committee does not recommend full removal, any reduction should be phased, reviewable, subject to individual hardship safeguards, and unable to take effect where it would undermine a participant’s stated goals, safety, community access, or family stability.
Recommend that any provider registration, enrolment or compliance changes preserve genuine provider choice for self-managed participants, including a practical, low-burden pathway for sole traders and small independent providers who are already safely and effectively supporting participants.
Recommend explicit statutory safeguards preventing plans from being reduced on the basis of honest disclosures made by participants, families or carers during check-ins, reassessments or functional capacity assessments, including disclosures about carer burnout, family mental health, workforce shortages, or difficulty finding suitable providers.
Recommend that underutilisation not be used as a basis for reducing a participant’s plan unless the NDIA has first considered whether the underspend was caused by provider shortages, lack of suitable workers, participant illness, administrative barriers, fear of misusing funds, or the absence of safe and appropriate services.
Recommend the removal or substantial amendment of the proposed treatment-based permanence test, so that treatments are not treated as “available” merely because they exist somewhere in Australia. Any permanence test must consider affordability, geographic accessibility, medical safety, participant tolerance, clinical suitability, and the practical reality of permanent disability.
Recommend that any new functional capacity assessment regime be free or low-cost; that assessors be trained explicitly to recognise high-masking presentations, particularly in girls, women and non-binary people; and that existing clinical evidence from a participant’s long-term treating team be given significant weight. A single-visit or snapshot assessment should not override current clinical evidence unless the NDIA gives clear written reasons.
Recommend that the NDIA give participants and their families plain-view access, through the myplace participant portal, to the core information the Agency holds about them, including recorded diagnoses, assessments and reports on file, evidence relied on for plan decisions, and reasons for any funding reduction. Families should not have to lodge a Participant Information Access request or Freedom of Information request to see basic records about their own child.
Recommend that the test of “parental responsibility” under s 34(1J) account for the permanence and intensity of a child’s disability-related care, including personal-care, supervision and safety needs that continue well beyond the age at which they would ordinarily end, so that lifelong caregiving far exceeding what any parent of a same-age child provides is not treated as ordinary parenting or used to reduce or refuse support.

Sincerely,

Name and contact provided to the Committee secretariat.