Real Cost of NDIS Underfunding (Family or carer experience)

Submission 825

Senate Standing Committee on Community Affairs

A Family in Crisis:

The Real Cost of NDIS Underfunding

Sarah Webb

Mother and sole carer of O.W. (NDIS [redacted]) and E.W. (NDIS [redacted])

Queensland, Australia  | 28 May 2026

Offer to give oral evidence I am willing and available to give oral evidence to this committee. I can provide all supporting clinical documentation referenced in this submission, including the original NDIA plan approval letters, clinical assessments, behavioural data logs, and GP records. Please contact me directly if the committee wishes to hear further evidence.

Executive Summary

This submission opposes key provisions of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 — in particular, the proposed changes to the definition of ‘permanence,’ the increased gatekeeping around support access, and the reduction or narrowing of capacity building supports.

Through the experience of my twin five-year-old sons with ASD Level 3, ADHD, Global Developmental Delay, and a Pathological Demand Avoidance profile, this submission demonstrates how the current system is already failing high-needs families through underfunding, delayed intervention, and increasingly standardised decision-making. The proposed amendments risk entrenching those failures further — by making access to support harder, slower, and more restrictive for the families who need it most.

This submission also raises a distinct and urgent concern about sole carers managing multiple participants with serious disability and no informal support network — a cohort the Bill does not appear to have considered, and whose circumstances the current ‘ordinary parental responsibility’ framework is demonstrably failing.

I ask the committee to consider whether the proposed amendments, in practice, will reduce early intervention and preventative support for families already operating in crisis — and whether the downstream costs of that reduction have been properly assessed.

On 18 April 2026, I was driving my five-year-old sons on a Queensland highway when one of them escaped his specialised restraint system and attacked me from the rear seat. His arm caught my seatbelt and pulled it tight around my neck. I lost control of the vehicle. For a moment, we were all going to die.

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That is not a metaphor for how hard our life is. That is what happened on a Tuesday afternoon, on the Bruce Highway, six weeks after the NDIS approved my sons’ plans at twenty hours of support per week each.

I am making this submission because the provisions of this Bill — in particular the proposed redefinition of ‘permanence’ and the proposed changes to how supports are assessed and funded — will directly affect families like mine. My experience under the current system is evidence of what happens when the NDIS framework fails to meet the reality of complex disability. This Bill, as currently drafted, would deepen that failure and extend it to more families.

1. Our Family My name is Sarah Webb. I am a sole parent with no partner, no extended family nearby, and no informal support network of any kind. I am raising identical twin boys — O. and E. — born 3 August 2020, at 33 weeks gestation.

Both boys carry identical diagnoses:

• Autism Spectrum Disorder Level 3 — the highest severity classification under the DSM-5, requiring very substantial support

• Attention Deficit Hyperactivity Disorder (ADHD)

• Global Developmental Delay

• Pathological Demand Avoidance (PDA) profile

• a rare chromosomal variation — a rare genetic variation As identical twins they share the same birth history: premature delivery at 33 weeks, microcephaly, recurrent ear infections requiring multiple surgeries, and sleep-disordered breathing. These are permanent, genetic, lifelong conditions. Standardised assessments confirm the severity of functional impairment across both children: self-regulatory capacity at the equivalent of a 10-month-old infant, and gross motor function (Vineland Adaptive Behaviour Scales-3) at the equivalent of a child under two years old. They are five.

I have had spinal surgery for scoliosis and knee surgery for patella instability. I physically cannot run. When my boys bolt toward traffic — which happens multiple times every day — I cannot chase them.

Until December 2025, I was employed earning approximately $115,000 per year. I was forced to cease employment because the boys’ needs escalated beyond what I could manage while working, and the NDIS had not provided adequate support. My GP has since declared me medically unfit for employment. That income — that independence, that future — is gone. The impact on my health and long-term financial security has been profound.

The boys’ father left before they were born. Everything that has happened since has happened to me alone.

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2. What Our Life Actually Looks Like I want to be specific, because specificity is what this committee needs — and because the provisions of this Bill will be felt in specifics, not in policy language.

O. and E. are each other’s primary behavioural trigger. When one escalates, the other immediately mirrors and amplifies it. Their allied health team has documented that there is effectively ‘no regulation’ when the boys are together. Our Occupational Therapist has stated in writing:

“Due to the presence of two children with complex and unpredictable behaviours, it is not possible for one adult to safely supervise both simultaneously. A minimum 1:1 support model per child is required at all times to ensure safety. This level of support cannot be reduced or shared.”

What this means on any given day:

• I cannot intercept one boy running into traffic without leaving the other completely unsupervised

• I cannot separate them during violent conflict while protecting myself from assault

• I cannot cook, toilet, shower, or make a phone call safely while both boys are awake

• I cannot load them into a car without one or both refusing, escaping, or attacking the driver

In April 2026 — the first month of their current NDIS plans — this is what was documented:

Documented events — April 2026, under plans funding fewer than 3 hours of support per child per day:

1 April: 275 separate behavioural incidents in a single four-hour period. Police attendance required. Ambulance attendance required.

Within two weeks: four Emergency Department presentations. Four mandatory Child Safety notifications filed by hospital clinicians.

18 April — Bruce Highway: O. escaped his specialised restraint system at highway speed and attacked the driver. His arm caused the driver’s seatbelt to tighten around the driver’s neck. Vehicle control was compromised. There was an immediate risk of fatality.

Throughout April: I was knocked unconscious by E.. E. compressed O.’s neck against a couch cushion until O. could not breathe. I barricaded myself in my own bathroom to protect myself from my five-year-old children.

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This is the documented reality of twenty hours of NDIS support per week.

I have been forced to contemplate surrendering my sons to foster care. Not because I do not love them — my children are safe and deeply loved. But because the system has pushed me to a point where I could see no other way to keep them alive. That is the measure of how badly the system has failed, not the measure of who I am as their mother.

Child Safety is involved. Family and Child Connect (Act for Kids) is involved. Every professional who has seen our file has described what they see as a family at the point of system collapse.

3. The Current NDIS Plan and How It Has Failed Both boys’ plans were approved in April 2026 at approximately 20 hours of support per week — less than three hours a day across seven days. This does not cover school holidays. It does not cover weekends adequately. It does not cover the high-risk transition periods that every clinician assessing these boys has identified as the most dangerous parts of our day.

The current funding assumes a level of safe independent functioning that neither boy has ever possessed. It assumes a carer who can physically intervene. It assumes that twenty hours is a partial solution — when for two children at this level of need, it is not a solution at all.

Both boys require their own dedicated 1:1 support worker. This is not duplication. It is the minimum level of supervision required to maintain safety. Two children simultaneously capable of life-threatening behaviour cannot be managed by a single adult with a physical disability — or by any single adult.

4. Evidence of Inadequate Individual Assessment by the NDIA I want to show this committee something concrete that speaks directly to how the NDIA is currently making decisions — because this is the same agency that would be responsible for implementing the provisions of this Bill.

O. and E.’s plan approval letters were written by the same NDIA Senior Planner and sent on the same day: 1 April 2026. I acknowledge that as identical twins with overlapping diagnoses, some similarity in their plans would be expected. I am not arguing the outcomes should have been entirely different. My concern is with the process.

When I placed the two letters side by side, they were not merely similar in structure. They were, in large sections, word for word identical. One passage in E.’s letter makes this undeniable — a sentence where his name was simply not inserted at all:

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“Assistance with connecting and coordinating mainstream, community, and funded supports, and understanding how to navigate ’s plan.”

The apostrophe is there. The word ‘plan’ is there. The child’s name is not. This is compelling documentary evidence — visible in the original letter — that E.’s plan approval was not written individually for E.. It is a copy-paste error that was not corrected before it was sent.

Section of letter          O.'s letter                              E.'s letter

Sent by / sent on                          , Senior Planner, NDIA — 1                   , Senior Planner, NDIA — 1

April 2026 April 2026

Total plan budget         $156,208.93                        $156,208.93 — identical to the cent

STA refusal reasoning     "insufficient evidence that informal     Identical sentence. Only the child's

supports are at risk of breaking name changed. down or that O. requires time away from his carer“

Physiotherapy refusal    "No evidence was provided of          Identical sentence. No individual

significant mobility, balance, reasoning. posture, or safety concerns“

Parental responsibility    "Some of the supervision described    Identical sentence.

paragraph relates to routine caregiving tasks expected of any parent“

Section 34 legal          "Under Sections 34(1)(c), 34(1)(d),     Identical sentence. Word for word.

reasoning and 34(1)(e) of the NDIS Act…“

Behaviour support         "available evidence does not           Identical sentence.

conclusion demonstrate a level of intensity or frequency that would require

Intensive and Complex Behaviour

Support“

Funding structure        20 hrs/wk × 12 weeks, then 15         Identical structure. Identical hours.

hrs/wk × 38.5 weeks. 5 hrs Identical step-down. Saturdays. 5 hrs Sundays.

Behaviour support        $15,144.35                         $15,144.35 — identical to the cent

funding

Child's name in Support   "understanding how to navigate       "understanding how to navigate 's

Coordination               O.'s plan"                             plan" — name omitted entirely

Two separate children. Two separate statutory decisions. One planner. One day. Identical budgets to the cent. And a child’s name that was never filled in.

Both letters also contain a direct internal contradiction. The STA refusal states:

“there is insufficient evidence that informal supports are at risk of breaking down”

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The approved supports section of the same letter describes the funded care as existing to:

“support informal carers (e.g., family) to take a break and maintain their caring role.”

These two positions cannot both be true. Either informal supports are under strain — in which case STA should have been approved — or they are not — in which case the rationale for the approved carer support is unfounded. This contradiction appears uncorrected in both letters.

I raise this not to criticise an individual planner, but because it is directly relevant to this inquiry. The NDIA is the body that would implement this Bill’s provisions. If the agency is currently applying templated reasoning to the most complex cases — including cases with documented near-fatal incidents, Child Safety involvement, and comprehensive clinical evidence — then adding further legislative gatekeeping to its processes will not produce better outcomes. It will produce faster rejections of the same standard.

If this level of templating occurred for one of the most clinically similar participant pairings possible — identical twins assessed on the same day — what is happening in families where the circumstances are less documented, less visible, and less extreme?

This matters directly to the proposed amendments. The Bill would expand NDIA discretion around eligibility, permanence, and support access — at the same time families already experience decision-making as under-resourced and insufficiently individualised. Increasing legislative gatekeeping without addressing the quality and consistency of frontline decision making will not improve outcomes. It will produce faster rejections of the same standard, applied to families with even less capacity to challenge them.

5. How the Provisions of This Bill Would Affect Our Family This section addresses the specific provisions of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and their likely impact on families in circumstances similar to ours.

5.1 The proposed redefinition of ‘permanence’ The Bill proposes that participants may be required to demonstrate they have tried all available treatments before being considered to have a permanent disability for the purposes of NDIS eligibility. Treatments may be considered ‘available’ even where they are unaffordable or inaccessible in the participant’s location.

Both boys’ disabilities are genetic. Chromosomally documented. Clinically assessed from infancy. Their self-regulatory capacity is formally equivalent to a 10-month-old. Their gross motor function is formally equivalent to a child under two. These impairments arise from a

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chromosomal variation that cannot be treated, reversed, or modified. There is no treatment — affordable, accessible, or otherwise — that changes these facts.

For families like mine, this provision would mean: demonstrating we have sought and exhausted treatments for a condition that has no treatment pathway, before being granted access to the support our children already need. The practical effect would be delay, distress, and — in cases like ours where delay has already produced near-fatal outcomes — serious preventable harm.

5.2 Changes to how supports are assessed and funded The Bill proposes changes that would alter how the NDIA assesses whether supports are reasonable and necessary. In our experience, the existing Section 34 framework is already being applied in ways that do not reflect clinical reality.

Both boys’ plans declined Physiotherapy on the basis that no evidence of motor impairment had been provided. Their Vineland-3 assessments — which were in both clinical files — place gross motor function at 1 year and 11 months for five-year-olds. That evidence was not engaged with in either decision. If the proposed amendments contained in this Bill add further gatekeeping to an assessment framework already failing to engage with clinical evidence on file, the result will be more families in our position — not fewer.

The ‘parental responsibility’ reasoning applied identically in both letters — stating that supervision described relates to ‘routine caregiving tasks expected of any parent’ — was applied without any apparent consideration of the fact that this parent cannot run, has no co parent, cannot safely manage one child without leaving the other completely unsupervised, and has sustained physical injury including loss of consciousness as a result of caring for these children without adequate support.

If the Bill adds further thresholds, further gatekeeping, and further grounds for declining supports to a framework already producing these outcomes, the impact on families at the most severe end of need will be profound and direct.

5.3 What the evidence says will happen — and is already happening

Risk What has already occurred / clinical assessment

Transport fatality 18 April 2026: O. escaped restraints at highway speed, attacked the driver, caused seatbelt to tighten around driver’s neck. Vehicle control was compromised. Clinical risk rating: Extreme.

Running into traffic Both boys abscond into roads and carparks multiple times daily. Clinical risk rating: Almost Certain / Catastrophic.

Serious caregiver injury I was knocked unconscious by E. in April 2026. Clinical risk rating: Almost Certain / Major.

Child on child injury E. compressed O.’s neck against a cushion until O. could not breathe. Clinical risk rating: Likely / Major.

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Out-of-home care Child Safety and Act for Kids are actively involved. Relinquishment has been contemplated. Clinical risk rating: Likely / Major.

Carer economic harm $115,000/year income lost. Medically unfit for employment. Long-term financial impact ongoing.

6. The Cost of Getting This Wrong Every Emergency Department presentation, ambulance callout, police attendance, and Child Safety notification costs the Commonwealth and state governments substantially more than the support hours that would have prevented it. The clinical reports for both boys document this analysis in detail.

In April 2026 alone — the first month under these plans — my family generated four ED presentations, four Child Safety notifications, multiple ambulance and police callouts, and a near-fatal highway incident. These are not the costs of a family that received too much support. They are the direct, documented costs of twenty hours per week. The system waits for crisis, then acts surprised when crisis occurs.

The NDIS was designed as a preventative investment model — intended to reduce long term system costs through early and adequate support. This Bill, as currently drafted, would move it further from that purpose — adding barriers to access at the point of eligibility, reducing supports at the point of planning, and placing the resulting costs onto emergency services, Child Safety, hospitals, and families who have already reached breaking point.

7. What This Bill Must Recognise About Sole Carers There is a group of carers this Bill appears not to have considered — and I am one of them.

I am a sole parent. I have no partner, no family nearby, no friends who can step in, no one to call. There is no informal support network to exhaust, because there never was one. When the NDIA declines respite on the basis that ‘informal supports are not at risk of breaking down,’ it is applying a framework built around families who have informal supports to begin with. I do not. I never did.

I want this committee to understand what that actually means day to day. There is no second adult who takes over when I am injured. There is no one who sits with the boys while I recover from a concussion. There is no one who loads them into the car when I cannot face another transport crisis. There is no one who comes. There is only me — and the NDIS — and right now, the NDIS is not there either.

I want to be unambiguous about something before this committee. My children are safe. My children are deeply loved. I am still here, still showing up, still fighting for them every single day. I am not a family that has broken. I am a family at the edge of breaking — held together

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by love, by sheer will, and by the absolute refusal to accept that my children’s disability should determine whether they get to stay with their mother.

I am the only person showing up for these children. Not because I chose isolation — because there is genuinely nobody else. Their grandparents are 75 and 80 years old. They cannot cope with the boys for even an hour. That is not a criticism. It is the physical reality of two elderly people confronted with two five-year-olds with ASD Level 3, explosive behaviours, and no danger awareness. There is no aunt, no uncle, no neighbour, no friend who can step in. There is me. That is the entire support network. And the NDIS has looked at that reality and applied the concept of ordinary parental responsibility.

Because that is what relinquishment means. It is not a bureaucratic outcome. It is a mother being told: the system will not help you enough to keep your children, and so families that could have stayed together are instead separated. That should never happen. It should never be the answer to disability. My children have disability. I am a single carer. I am the only person showing up for them. None of those facts — not one — should place me in a position where relinquishment becomes the only remaining option. The system must be required to support families to stay together through adequate and timely support — not to make staying together impossible and then act surprised when families break.

There is also a critical structural problem with how respite is currently designed that this committee must understand — and it speaks directly to the safety evidence cited above. The Royal Commission into Institutional Responses to Child Sexual Abuse found that respite care is one of the highest-risk settings for abuse of children with disability, precisely because it places non-verbal, communication-impaired children with unfamiliar adults in unfamiliar environments. The NDIS currently funds Short Term Accommodation as the primary form of respite — requiring children to be placed with unknown providers in unknown locations. For children like mine, who cannot communicate what has happened to them, who cannot identify danger, and who cannot seek help, this structure creates the very risk the Royal Commission identified.

The solution to both the carer’s need for relief and the child’s need for safety is the same: respite must be deliverable by current, trusted support workers who already know these children — in the family home or a familiar environment. These workers understand the children’s communication, can read their dysregulation before it escalates, have established safety protocols, and are known to the children. This is not a lesser form of respite. It is safer respite — for the child and for the carer. The NDIS framework must be amended to allow trusted existing supports to deliver respite in familiar settings, so that a carer getting relief does not require placing a vulnerable, non-verbal child in an unknown environment with unknown adults. These two things — carer relief and child safety — must not be in conflict. With the right framework, they are not.

When a parent is told that what they are doing — the supervision, the physical intervention, the medication management, the sleepless nights, the constant hypervigilance required to keep a child with ASD Level 3 alive — constitutes ‘ordinary parenting,’ the system is not making a funding decision. It is denying reality. And when that denial is sustained over months and years, with no adequate support, no respite, and no relief in sight, the consequences can be catastrophic — not just for the carer, but for the children they are trying to protect.

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This committee should be aware that Australia has witnessed multiple tragedies in recent years in which families caring for children with serious disability — who had reached complete breaking point without adequate support — did not survive. These cases, documented in national media and the subject of public inquiry, demonstrate that the consequences of sustained carer exhaustion without relief can be catastrophic and irreversible. They are not isolated incidents. They are the endpoint of a continuum that begins with inadequate funding, continues through carer exhaustion, and ends when a family has nothing left.

I want this committee to sit with one specific fact about those cases. In every one of them, there were two parents. Two adults sharing the load. Two people to physically intervene, to sleep in shifts, to hold each other together when one could not continue. Two carers — and the system still failed them. Still pushed them past the point of survival.

I am one person. I have two children with ASD Level 3, ADHD, and PDA. I have no partner, no family, no one to hand anything to. And the NDIS has responded to my family’s situation with plans that are not only inadequate — they are being stepped down. The support is being reduced over time, not increased, despite escalating clinical evidence of risk. If two parent families with two high-needs children reached breaking point under a system that failed them, what does this committee believe will happen to a sole carer under a system doing the same — with half the human resources and a plan that is actively declining?

The answer to these tragedies is not sympathy after the fact. It is prevention before the breaking point is reached. The ‘ordinary parental responsibility’ framework, as currently applied, is a structural barrier to that prevention. It should be abolished as a basis for declining or reducing support for children with serious disability where the carer is a sole parent with no informal support network. No ordinary parent faces what these families face. No ordinary parenting framework should be used to deny them help.

I want this committee to understand what sole carers are actually managing. Not in abstract terms. In the reality of every single day.

We manage the explosive and aggressive behaviour — the meltdowns, the violence, the physical interventions, the injuries we sustain and do not report because there is no one to report them to and no time to stop. We manage the medication — the schedules, the side effects, the pharmacy runs, the reviews with specialists who are booked three months out. We manage every appointment — paediatricians, occupational therapists, speech pathologists, physiotherapists, behaviour support practitioners, school meetings, NDIS reviews, Child Safety check-ins — and we attend them alone, often with both children in tow, because there is no one else.

We manage the sleepless nights. Not occasionally. Chronically. For years. We manage the advocacy — fighting the NDIS for every support hour, fighting schools for every reasonable adjustment, writing submissions, attending reviews, gathering evidence, translating clinical language into the documentation the system demands — all while running on no sleep and no help.

And alongside all of that — shouldering all of that — we cook. We clean. We pack school lunches. We iron uniforms. We bathe our children. We toilet them. We dress them. We do

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every single thing that keeps a household functioning and children fed and clothed and present at school — not because these tasks are small, but because they all fall to us, on top of everything else, every day, with no one to hand anything to.

All of this. Every day. To help our children function in the world. And none of it is counted, recognised, or relieved by the framework this Bill would entrench.

Consider this: a trained, experienced support worker — someone specifically qualified to manage complex disability behaviours — is drained after a four-hour shift. They clock off. They go home. They recover.

I do not clock off. I do not go home. There is no shift end, no handover, no recovery. I am the only person standing between my children and serious harm, twenty-four hours a day, seven days a week, with no break, no relief, and no one coming. What a trained professional finds exhausting for four hours is my entire life.

And when the system fails to provide adequate support — when the NDIS refuses hours, declines respite, and applies ‘parental responsibility’ reasoning to a situation no ordinary parent has ever faced — and that failure escalates to Child Safety involvement, this must be named clearly: that is NDIS-induced crisis, not parental neglect. This was not parental indifference or abandonment. It was a family reaching systemic breaking point under inadequate support.

When Child Safety becomes involved because a sole carer cannot safely manage two children with ASD Level 3, no informal supports, and fewer than three hours of funded support per child per day — the NDIA should be required to review whether inadequate funding decisions contributed to that outcome, and to respond without requiring the carer to initiate a further application or produce yet more evidence of a crisis that the system’s own decisions helped create.

That is not what the current framework does. And this Bill, as drafted, would make it harder still.

That inequity is not acknowledged anywhere in this Bill. It should be.

A two-parent household with one child with ASD Level 3 has two adults to share the supervision load, two adults to physically intervene, two adults to take turns sleeping, two adults to protect each other from injury. When one parent is knocked unconscious, the other is there. When one is overwhelmed, the other steps in.

I have two children with ASD Level 3 and I am one person. The supervision load is not double — it is exponentially greater, because the dual escalation dynamic between the boys means that each child’s crisis immediately becomes the other’s. I do not get to halve my attention. I am required to be in two places simultaneously, with a body that cannot run, to manage situations that trained professionals working in pairs describe as requiring immediate physical intervention.

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And yet the support my sons receive — the hours, the respite, the capacity building — is assessed against the same baseline applied to a two-parent family with one participant. The ‘ordinary parental responsibility’ framework takes no account of whether there is one parent or two. It takes no account of how many children with disability that parent is managing. It takes no account of whether any informal support exists at all.

What we need — what this Bill has the opportunity to mandate — is simple: sole carers managing multiple participants with serious disability and no informal support network should not have to prove breakdown before receiving respite. They should receive the full 28 days of Short Term Accommodation automatically, at plan commencement, every plan year, as a recognised baseline — not as a concession wrung from a system that required them to demonstrate they were already collapsing before it would help.

The committee should also understand the broader context in which sole carers of children with disability are operating — because the NDIS framework, and this Bill, appear to have been designed without it.

The data specific to children with disability is unambiguous. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability found that people with cognitive and psychological impairments — the profile that describes both of my sons — report higher rates of all types of violence than people with any other impairment type. The Royal Commission into Institutional Responses to Child Sexual Abuse found that between 9 and 14 in every 100 children with disability are likely to experience sexual abuse, and specifically identified respite care, school transport, and personal care services as high-risk settings. The AIHW reports that nearly half — 48% — of specialist homelessness service clients who have experienced family and domestic violence are living in single parent families, and that children and young people who experience both family violence and homelessness face increased risks of sexual exploitation, repeat homelessness, and interruption to education and health care (AIHW, 2025). Families affected by disability fleeing domestic violence are among the most vulnerable in the country. The data has said so for years.

In January 2023, my sons and I experienced homelessness as a direct consequence of family violence and the financial abuse that preceded it. We are one of those families in those statistics. The circumstances that produced that homelessness — financial control, the effective absence of child support, the impossibility of maintaining employment while managing two children with complex disability and no support — are the same circumstances that the NDIS framework currently treats as ordinary parental responsibility.

There is a specific, evidence-based safety gap I want to place before this committee. The Royal Commission into Institutional Responses to Child Sexual Abuse found that children with disability face particular difficulty disclosing abuse due to communication impairments, and that their disclosures are more likely to be dismissed or misattributed to their disability. These findings apply with full force to children like mine, who are non-verbal or minimally verbal during dysregulation, who cannot reliably identify danger, and who cannot seek help independently.

When families fleeing domestic violence are placed in emergency or transitional housing — often rapidly, with no choice about location — these same children may be housed in proximity to individuals who pose a serious risk to them. The systems responsible for that

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housing — homelessness services, housing authorities, the NDIS — do not currently cross reference with child protection or other safety systems to assess whether a placement is appropriate for a child with this specific vulnerability profile. The Royal Commission’s own findings establish that this is a known, documented risk. The NDIS, as the agency responsible for the safety and wellbeing of participants with disability, should have a formal role in ensuring that housing placements for child participants who have fled family violence are assessed against their specific communication and safety needs. That role does not currently exist. This Bill does not create it. It should.

In my case, the boys’ father has made only minimal payments since the twins were approximately two and a half years old — limited to occasional amounts drawn from his annual tax return, totalling approximately $3,000 per year. The outstanding debt, as documented by Services Australia as at 28 May 2026, is $54,853.39. No further payments are currently available to be sent. The agency has been unable to locate his income. That debt will not be recovered in any timeframe that helps my children today.

The NDIS ‘ordinary parental responsibility’ framework assumes two parents, or at minimum one parent with access to child support, informal networks, and the physical and financial capacity to absorb what the NDIS does not fund. For sole carers who have experienced financial abuse, who are owed tens of thousands in unpaid child support, who have experienced homelessness with disabled children, and who cannot work because the support system has left them as the only available supervisor — that assumption is not just wrong. It is the mechanism by which the system justifies withholding help from the people who need it most.

There is a fundamental design flaw in how the NDIS currently operates for families like mine, and this Bill does nothing to correct it. While NDIS plans are rightly individualised for each participant, the carer support required to implement those plans is treated as invisible. Where there is a single carer with no informal support network and two or more participants with high and complex needs — ASD Level 3, ADHD, PDA — the family unit must be assessed as a whole. The cumulative caregiving demand on that one person is not the sum of two individual plans. It is exponentially greater, because both participants escalate simultaneously, trigger each other, and require physical intervention that one adult cannot provide to two children at once. The NDIS must account for this. Carer support must be assessed as adequate from the outset — not after the carer has already broken.

Employment loss is one of the clearest measurable indicators of plan failure, and it is currently treated as invisible by the system. A sole carer who has been forced to cease employment because their children’s NDIS plans do not provide sufficient support to allow them to work has not made a lifestyle choice. They have been failed by the system. In my case, that failure cost $115,000 per year in income. It cost my financial independence, my superannuation, my capacity to house and provide for my children without government support. A plan that produces that outcome for a carer is not a plan that is working. It is a plan that has transferred the cost of disability support from the NDIS budget onto the carer’s body, income, and future — and then recorded itself as adequate. This Bill should require the NDIA to treat carer employment loss as a formal indicator of plan inadequacy, triggering mandatory review.

Carers are cheaper for the government than out-of-home care. The cost of keeping a family together — through adequate NDIS support, through real recognition of sole carer circumstances, through early intervention rather than crisis response — is a fraction of the

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cost of the alternative. The current system waits until carers have reached complete breakdown, and then wonders why they broke. This Bill, as drafted, does not change that. It should.

8. Recommendations I respectfully ask the committee to consider the following recommendations in its report on this Bill:

9. Do not redefine ‘permanence’ in a way that imposes treatment trial requirements on participants with documented genetic and chromosomal conditions. Where a disability is clinically assessed as permanent and arising from a verifiable genetic variation, no treatment pathway requirement should apply.

10. Do not reduce or restrict capacity building supports for children with ASD Level 3.

Physiotherapy, Occupational Therapy, Speech Pathology, and Specialist Behaviour

Support are clinically necessary for children at this level of need. These supports should not be subject to additional gatekeeping thresholds where need is already clinically documented.

3. Require the NDIA to demonstrate genuine individual assessment for each participant. The committee should examine whether current planning processes — including the use of templated decision letters — are consistent with the individualised assessment the Act requires. Where evidence suggests templating has occurred, this should trigger internal quality assurance review and closer scrutiny of whether genuine individual assessment took place.

4. Require the NDIA to publish and account for the downstream costs of underfunding decisions, including emergency service responses, Child Safety notifications, hospital admissions, and out-of-home care placements that follow from inadequate plans. Value for money must be assessed across whole-of-government cost, not the NDIS budget line alone.

5. Abolish the use of ‘ordinary parental responsibility’ as a basis for declining or reducing NDIS support for children with serious disability where the primary carer is a sole parent with no informal support network. The concept as currently applied does not reflect the reality of caring for a child with ASD Level 3, ADHD, and PDA — and its routine use to deny funding to exhausted sole carers represents a systemic failure that this Bill has the opportunity to address. The framework must be replaced with one that assesses actual caregiving demand against actual carer capacity, accounting for disability severity, number of participants, absence of informal support, and carer physical limitations.

6. Require the NDIA to assess the family unit as a whole where a sole carer with no informal support network is caring for two or more participants with high and complex needs. While individual plans must remain individualised, the carer support required to implement those plans must be assessed against the cumulative caregiving demand on that one person — not against each plan in isolation. Adequate carer support must be determined at the point of planning, not after breakdown has already occurred.

7. Require the NDIA to treat carer employment loss as a formal indicator of plan inadequacy, triggering mandatory plan review. A sole carer who has been forced to cease employment because their children’s plans do not provide sufficient support to

Submission 825

allow them to work has not made a personal choice — they have been failed by the system. The financial, health, and long-term economic consequences of that failure fall entirely on the carer and, by extension, on the children who depend on them. This outcome must be treated as evidence that the plan has failed, not as an acceptable consequence of disability.

8. Mandate that sole carers managing multiple participants with serious disability — including ASD Level 3, ADHD, and PDA — who have no informal support network are automatically provided with the full 28 days of Short Term Accommodation at plan commencement, every plan year, as a recognised baseline entitlement. This provision must not require carers to demonstrate breakdown before support is granted. Critically, this respite must be deliverable by current trusted support workers in familiar environments — not only through placement with unfamiliar providers in unknown settings, which creates unacceptable safety risks for children who cannot communicate, cannot identify danger, and cannot report harm. Carer relief and child safety must be achieved together, not traded against each other.

9. Recognise in legislation that where Child Safety involvement arises directly from inadequate NDIS funding — not from parental neglect or incapacity — the NDIA should be required to review whether inadequate funding decisions contributed to that outcome, and to act on that review without requiring the carer to initiate a further application or produce additional evidence. NDIS-induced crisis must be distinguished from parental failure, and the system must respond accordingly.

10. Establish a formal, legislated obligation for the NDIA to coordinate with housing and child protection agencies when an NDIS participant who is a child with complex communication needs and serious disability is placed in emergency or transitional housing following family violence. Children with disability who cannot communicate verbally, cannot identify danger, and cannot report abuse are uniquely vulnerable in unvetted emergency housing environments. The NDIA must have a role in ensuring their placement is assessed as safe for their specific disability and communication profile, and that relevant systems cross-reference to prevent placement in proximity to known risks.

11. Ensure that carers who have sustained physical injury and lost substantial employment income as a direct result of providing care without adequate NDIS support are not further disadvantaged by funding reductions that increase their caregiving burden and reduce their capacity to participate economically.

12. Conclusion I did not choose to raise two children with ASD Level 3 alone. I did not choose to sustain physical injuries caring for them without support. I did not choose to lose a $115,000 income, or to have Child Safety involved in my family, or to sit in a car on the Bruce Highway wondering if any of us were going to make it home.

What I chose was to keep going. To document everything. To engage every clinician, every process, every avenue the system offered. And to write this submission — because someone has to tell this committee what system failure actually looks like. Not in policy language. In a kitchen at 6am, in a car on a highway, in a bathroom where a mother has barricaded herself to survive her own children.

Submission 825

The provisions of this Bill would not have prevented any of what happened to my family. They would have made it harder for families like mine to access support before crisis arrived — and they would give the NDIA more tools to decline support after crisis has already occurred.

Families should not have to reach police attendance, hospitalisation, Child Safety involvement, or contemplated relinquishment before the system recognises that support is cheaper — and more humane — than collapse.

I ask the committee to recommend that this Bill not proceed in its current form — and that the government instead resource the NDIA to meet needs that are already documented, already assessed, and already resulting in serious harm to real children and their families.

I am willing to give oral evidence to this committee and to provide all supporting documentation referenced in this submission upon request.

Sarah Webb

Mother and sole carer of O.W. (NDIS [redacted]) and E.W. (NDIS [redacted])

Queensland, Australia  | 28 May 2026

Appendix: Supporting Clinical Documentation

All documentation listed below is held on both boys’ NDIS files and is available to the committee on request. Clinical reports were prepared by qualified practitioners who are available to the committee as expert witnesses if required.

Document What it establishes

DC Specialist Behaviour Reports Full clinical assessments including risk matrices, restrictive — O.W. and E.W. (May 2026), practices documentation, functional impact summaries, dual , Accredited Social escalation cascade analysis, and clinical recommendations. Worker (AASW), Prepared in support of s100 internal reviews for both boys.

Functional Capacity Standardised assessments including Vineland-3 results Assessments — O. and E.W. confirming functional age equivalents, absconding risk, transport (Grow Together OT, April 2026) risk, and full support requirements. Includes the itemised, hour-by hour shift schedule the NDIA stated was not provided — it was provided and remains on file.

Behavioural Recording Tool — Quantitative log of 77 discrete crisis periods, including the 275 March–April 2026 incident four-hour period of 1 April 2026 and the Bruce Highway transport incident of 18 April 2026.

NDIA Plan Approval Letters — Original documents available for direct side-by-side comparison.

O. and E.W. (1 April 2026) The copy-paste error omitting E.’s name is visible in the original. GP documentation — Sarah Confirms medical unfitness for employment, documented physical Webb limitations arising from spinal and knee surgeries, and injuries sustained while providing care without adequate support.

Submission 825

Hospital records — April 2026 Confirms four Emergency Department presentations and four mandatory Child Safety notifications within a two-week period following plan commencement.

Behaviour support reports prepared by , Accredited Social Worker (AASW), , NDIS Approved Provider. Contact: