Submission 69 — Ms Pia Kyre — Submissions to Foundational and disability supports available for children and young people in New South Wales

Submission

No 110

INQUIRY INTO FOUNDATIONAL AND DISABILITY

SUPPORTS AVAILABLE FOR CHILDREN AND YOUNG

PEOPLE IN NEW SOUTH WALES

Name: Ms Pia Kyre

Date Received: 18 September 2026

Submission to the Select Committee on Foundational and Disability

Supports Available for Children and Young People in New South

Wales

Second-round submission, responding to Report No. 1 and the NSW Government response

Pia Kyre

18 September 2026

Committee Secretary

Select Committee on Foundational and Disability Supports Available for Children and Young People in

New South Wales

Legislative Council, Parliament House

Macquarie Street, Sydney NSW 2000

disabilitysupports@parliament.nsw.gov.au

Dear Committee Members,

I make this submission in a personal capacity as a carer and lay advocate. I consent to it being published in full under my name.

1. Who I am and why I am writing now 1.1 I am 55, a late-diagnosed AuDHD adult, and the full-time carer of my adult son, who is non-speaking, intellectually disabled and AuDHD. I am also the mother of two adult daughters who are almost certainly neurodivergent and remain undiagnosed. I raised all three as a single parent for the past thirteen years. I live in Port Macquarie on Birpai Country, and for thirty years before that I lived in Kempsey on Dunghutti Country. Everything in this submission happened on the Mid North Coast of New South Wales.

1.2 I live with osteoarthritis and tendon damage in both feet that now limits my mobility. Caring is physical labour, and my body carries its record.

1.3 I write as a witness to my son’s story, not its owner. He cannot be consulted on this submission. Throughout, I describe what I saw and what caring required of me, and I do not claim to know his interior experience. Where I quote something he says, I say where it came from and no more.

1.4 I have read the committee’s First Report (Report No. 1), published 20 February 2026, and the NSW Government’s response to it.¹ The committee made 17 recommendations. The Government supported two outright. Three it did not support: Recommendation 3, that whole-of-family wellbeing including carer mental health, respite and sibling needs be embedded in foundational supports; Recommendation 4, that transitions between systems be co-designed with safeguards so that no child’s essential supports are interrupted; and Recommendation 13, that foundational supports uphold children’s right to support in their learning and educational setting.²

1.5 Every one of those three describes something my family needed and did not get. This submission is written to put on the record what “not supported” costs, measured in one family across more than two decades.

1.6 This is my third submission this year. My submission and supplementary submission to the Senate

Standing Committees on Community Affairs inquiry into the National Disability Insurance Scheme

Amendment (Securing the NDIS for Future Generations) Bill 2026, published as Submission No. 121, are on the federal public record under my name, and I draw on them here where the material falls within this committee’s terms of reference. I have also made a submission to the Legislative Assembly Committee on Community Services inquiry into the Human Rights Bill 2025, published as Submission No. 124.³

2. Summary of recommendations I ask the committee, in its final report, to recommend that the NSW Government:

1. Reinstate whole-of-family wellbeing (Report No. 1, Recommendation 3) as a core design principle of NSW foundational supports carer physical and mental health, respite that is usable in practice, and sibling support and explain in the final report why the Government’s rejection should not stand.

2. Fund active developmental screening in universal settings preschools, playgroups and community health so that identification does not depend on which parent a mother happens to sit beside.

3. Establish a mechanism that holds a child in early intervention when family violence disrupts access, including a requirement that services notice when a child stops attending and act on it.

4. Guarantee 1:1 support in educational settings where a student’s presentation requires it, and review support unit staffing ratios against actual need rather than enrolment.

5. Require a documented, escalating response wherever a student with disability self-harms at school, so that repeated self-harm triggers review and additional support rather than accumulating until a parent withdraws the child.

6. Adopt transition safeguards with no interruption of supports (Report No. 1, Recommendation 4), applying expressly to the NDIS-to-Thriving Kids transfer that lands in NSW in January 2028, and to the transition from child to adult services.

7. Restore independent disability advocacy capacity in NSW to recommended caseload levels, and publish caseload data by region.

8. Require diagnostic currency in child neurodevelopmental assessment across NSW Health and NSW-contracted allied health in regional and rural areas funded professional development, specialist supervision, and no diagnostic practice that predates the DSM-5.

9. Provide access to foundational supports on the basis of functional need, without formal diagnosis as a precondition.

10. Invest in the child development and early intervention workforce through funded training in trauma-informed and neurodivergent-affirming practice, permanent employment pathways, and a recognised career structure.

11. Build in safeguards against service-induced disengagement being read as low need, so that families who have withdrawn from services because those services harmed them are not assessed as families who do not need help.

12. Fund succession planning for ageing carers as part of the support system, not as a private problem to be solved after the carer’s death.

13. Co-design foundational supports with disabled people and carers, including non-speaking people with genuine communication access, and long-term family carers.

14. Early identification, and how it was lost (terms of reference (a), (d)) 3.1 My son was identified early. What followed demonstrates that early identification is worth nothing on its own.

3.2 We attended a weekly playgroup at the local preschool from when he was around twelve months old. What prompted me to act was not a professional observation. It was a conversation with another parent there, whose son had been diagnosed. I was describing the behaviour of a diagnosed child in my own extended family, and what she told me about her son cut across the assumptions I had been carrying about what autism looks like. Those assumptions had been built on a single example. Hers was a second one, and it was different enough to change what I thought I was seeing at home.

3.3 I raised it with his community health nurse at the first opportunity. She referred him to a psychologist and he was diagnosed at eighteen months, then referred into early intervention for speech and occupational therapy.

3.4 By the standards of this inquiry’s terms of reference, what followed was the system working: a referral, a diagnosis before two, and intervention underway before his second birthday. But the committee

should be clear about what triggered it. No professional in that setting identified him. The pathway opened because I happened to be standing next to a parent who knew something I did not, and because what she told me was specific enough to dislodge a wrong assumption. That is not a screening system. That is luck, distributed unevenly and it runs in favour of parents who are already inside a network where diagnosis has happened to someone else. Families without that proximity get no conversation, no correction, and no referral. The committee’s own Finding 13 records that families engage first through playgroups and peer settings, and that these entry points are not consistently leveraged within the service system.⁴ My son’s identification is that finding in a single sentence.

3.5 Then we experienced an escalation in domestic and family violence, and access to those services ceased. It did not resume. My children and I escaped three months before his sixth birthday. He started school the following year in a support unit, having lost the entire remainder of his early intervention window.

3.6 I ask the committee to sit with that sequence, because it is not a story about a family who fell through the gaps. It is a story about a family the system had already found. He was diagnosed, enrolled, and receiving therapy. What removed him from services was violence in the home and nothing in the design of early intervention at that time was capable of holding a child in place through it. There was no mechanism that noticed a child had stopped attending and asked why. There was no pathway that connected what was happening in our house to what had stopped happening in his therapy. The service system and the violence occupied entirely separate worlds, and he fell into the space between them and stayed there.

4. School: therapy without the conditions for therapy (terms of reference (b), (c), (e), (g)) 4.1 Once he was in school, the therapy he could access was a poor fit for him, and it was delivered in whatever room happened to be free. The physical conditions were usually entirely inadequate for a child with his sensory profile. Therapists’ recommendations frequently went unimplemented, and I do not attribute that to indifference. School staff were carrying an accommodation load across a whole cohort of students with individual needs that they had neither the time nor the staffing to meet. Where recommendations failed for another reason, it was because the internal experience of autism was not understood staff were responding to what a behaviour looked like from outside rather than to what was driving it.

4.2 What actually worked was never the program. It was the person. When a staff member happened to have the right combination of skill and experience, he did well visibly, unmistakably well. When that staff member moved on and he lost access to them, he went back to struggling. His progress was never held by the system; it was held by individuals, and it left with them.

4.3 His transition to high school made this plain. The high school setting was, on the whole, less accommodating than primary had been, and he arrived there without the staff relationships that had been carrying him.

4.4 He continued to struggle throughout this period with ADHD that had not been identified. In 2018 and 2019 he was trialled on ADHD medication. For the preceding year, he had been medicated with antipsychotics, which were continued until they failed to produce benefit.

4.5 I put this to the committee as a diagnostic services matter under term of reference (c). A child with a documented autism diagnosis from eighteen months old carried an unidentified co-occurring condition into his teens, and in the interim was prescribed antipsychotic medication. Co-occurring ADHD in autistic children has been diagnosable in Australia since the DSM-5 removed the prohibition on dual diagnosis in 2013.⁵ His was not identified for a further five or six years.

5. The support unit, 2022 (terms of reference (a), (d), (e), (g)) 5.1 He was attending a support unit at his public high school. The class was six students, one teacher and one aide. For his presentation that ratio was woefully insufficient, and I said so. I advocated repeatedly for additional 1:1 support and was repeatedly denied.

5.2 During this period he was experiencing daily episodes of significant self-harm at school. He was also being frequently taunted. One of his vocal stims, four years later, is the phrase “are you retarded?” the

exact words used to abuse him, now in his own voice.

5.3 The day he came home repeating that phrase, with a significant laceration on his forehead from self harm, was the day I resolved to remove him from the school regardless of my own overwhelm. I was in severe burnout myself. I registered and implemented home schooling anyway a substantial administrative and educational undertaking attempted under conditions of acute crisis.

5.4 I ask the committee to note what that decision actually was. A parent in burnout removed a child from the NSW public education system and took on his entire education herself, because that was a better option than what the school was providing. No part of the system treated that as a failure requiring a response. It was simply absorbed.

What the allied health team did

5.5 The therapy team supporting him at the time speech, occupational therapy and behaviour support pushed for compliance and engagement-based intervention despite my repeated reporting of our state. When I cited trauma-informed research and the evidence base for low-demand parenting as the appropriate response to autistic burnout, those clinicians colluded with the then Support Coordinator to characterise my approach as “lazy” and “indulgent,” and to warn that I was “creating a rod for my own back.”

5.6 Recommendations included forced attendance at in-home sessions in which therapists would follow my son into his bedroom to continue therapy, would press for forced eye contact and participation, and would attribute his subsequent dysregulation to me “not trying hard enough.”

5.7 When I then found the home schooling registration process difficult, the same team ridiculed me for it and accused me of “faking” that I was struggling.

Why this belongs to this committee

5.8 Three things converged on one child in one year, and all three sit inside NSW jurisdiction.

5.9 The educational setting. A NSW public school support unit was staffed at a ratio that could not meet his needs, a parent identified that and requested more, and the request was refused. This committee’s Recommendation 13 was that foundational supports uphold children’s right to support in their learning and educational setting. The Government did not support it. My son is what its absence produces.

5.10 The response to self-harm. A student was self-harming daily, on school grounds, at a school that knew he was doing it. The outcome was not escalation, review, or additional support. The outcome was that his mother withdrew him. I am not aware of any NSW mechanism that treats repeated self-harm by a student with disability as a trigger requiring a documented response, and I ask the committee to establish whether one exists and, if not, to recommend one.

5.11 The allied health workforce. Term of reference (g) asks about the quality and capacity of the existing workforce. The clinicians working with my son did not recognise autistic burnout, treated evidence-based low-demand practice as parental failure, and proposed escalating demand on a child who was already self harming daily. This was not a resourcing shortfall. It was a competence and currency shortfall, in a regional area, in a workforce with limited access to supervision and professional development. It compounded the school’s failure rather than correcting it, and it removed the last avenue through which the school’s failure might have been challenged by someone other than me.

The cost that is still being paid

5.12 The events of 2022 did not end in 2022.

5.13 He has one vocal stim that is the sound of the abuse he received at school, and he has had it for four years.

5.14 I have not engaged the respite services we are technically entitled to access. There is no respite in white-knuckling a night away from one another waiting for the failure of support to occur. I carry a constant, low-level fear that any episode of his dysregulation will result in another support worker leaving, and the consequence of that is not one I can absorb again. Our household organises itself around the anticipation of further service failure. We rarely leave the house.

5.15 The therapeutic relationship itself became a trauma trigger. Re-engaging with services has had to be approached cautiously, slowly, and at significant personal cost.

5.16 This is the structural risk I most want the committee to take from my evidence. Poorly delivered, compliance-driven supports do not merely fail to help. They foreclose future help-seeking, sometimes permanently. A child harmed by services does not return to them as a young adult. A carer harmed alongside him does not either. Nothing in the design of NSW foundational supports currently accounts for the families who will not come back, and no savings calculation will ever show them, because they appear in the data as families who did not need help.

6. Siblings: the children no service ever asked about (Report No. 1, Recommendation 3) 6.1 The committee recommended that whole-of-family wellbeing, including sibling needs, be embedded in foundational supports. The Government did not support that recommendation. I have two daughters. Both are almost certainly neurodivergent, neither was identified as a child, and no service involved with their brother ever asked either of them a single question about how they were.

6.2 My younger daughter presented with several clinical markers of autism as a preschooler in 2006. What her preschool flagged was possible hearing loss, because she did not respond when her name was called. That was the only concern raised, and it was the wrong one. Through primary school the reporting was consistent: too talkative, slow to finish work. She was compared to her older sibling repeatedly, and over time the comparison hardened into an assumption that she had less potential. She absorbed that assessment. Before the end of Year 10 she went into what I now recognise as an intense burnout. In fourteen years of schooling, none of this produced a referral.

6.3 My eldest presented as the opposite and arrived at the same place. They achieved, they masked, and they passed through the system without attracting a question because the system has no mechanism for noticing a child who is coping at unsustainable cost. Nothing was identified until Year 11, when they were suspended. The conduct that finally drew the school’s attention was, read correctly, several diagnostically relevant indicators arriving at once. The school read it as misconduct. A suspension was the first formal notice anyone took of a child who had by then been unsupported for eleven years.

6.4 Both are adults now. Both remain undiagnosed.

6.5 I ask the committee to note what these two accounts have in common. In both cases the school system was looking directly at the child. In one it misattributed autistic traits to a hearing problem and stopped looking; in the other it interpreted an unsupported child in crisis as a disciplinary matter. And in both cases there were funded services already inside our household, working with their brother. Those services knew there were two other children in the home. Not one of them ever asked about either girl. Sibling need was not missed because it was hard to see. It was missed because nobody in the system was assigned to look, and that is a design decision, not an oversight.

7. What caring costs the carer (Report No. 1, Recommendation 3; term of reference (d)) 7.1 The committee’s Finding 2 states that caring for a child with developmental delay or disability impacts the mental and physical health of parents and caregivers, who must navigate disconnected or non-existent referral pathways, unclear eligibility, inequitably applied rules and significant financial cost.⁶ I can confirm that finding with my life.

7.2 I have, on paper, considerable early intellectual potential. I completed my HSC in 1988 and began four separate undergraduate degrees in the years that followed, carrying a distinction average each time, and could not sustain any of them the predictable outcome of an unidentified neurodivergent adult attempting to navigate institutions designed around neurotypical executive function. I mention this only so the committee understands who is being described in the paragraphs that follow.

7.3 In practice, I live in social housing. I have no holidays, no sick leave and no superannuation. As a recipient of the Carer Payment, I live below the poverty line. I am currently struggling to keep my car roadworthy and registered, and without it the appointments, the pharmacy, and the one or two places my son can tolerate are out of reach.

7.4 The osteoarthritis and tendon damage in my feet are, in the most literal sense, an occupational injury. Two decades of lifting, pacing, standing, following and holding have been written into the joints. I now manage stairs one at a time. The physical work of caring does not diminish as a carer ages; it is the carer’s capacity that diminishes, and no part of the system I have dealt with has ever asked what happens at the

point where the two lines cross.

7.5 I have justified staying at home as a way of keeping money in my pocket. The truth that has become harder to ignore is that, as much as the world outside frightens and traumatises us, the staying-at-home is also a function of how disabled people and their carers are positioned in Australian life: out of sight, out of public space, out of the everyday view of the people for whom these policies appear to be designed. We are expected to live our lives in private, so that the public is not inconvenienced by the reality of what disability and caring actually cost.

7.6 Recommendation 3 was the committee’s attempt to bring that cost inside the design of the system. The Government’s rejection leaves it where it has always been: on the bodies and in the households of carers, unpriced and unseen.

8. Diagnostic services in regional New South Wales (terms of reference (c), (g)) 8.1 The committee’s Finding 3 addresses the particular barriers facing families in regional and rural areas.⁷ I want to add one dimension to that finding: it is not only that specialist services are thin. It is that the clinical workforce that does exist may be working from diagnostic understandings that are more than a decade out of date.

8.2 When I sought assessment for my own neurodivergence through the public system, the public GP, mental health nurse and psychiatrist I saw appeared unaware that the DSM-5 had, in 2013, removed the prohibition on diagnosing autism and ADHD as co-occurring conditions. Because my presentation did not match a stereotypical autistic profile, I was told I was lazy and needed to try harder. I was eventually diagnosed in 2023 24 by a private practice at a cost of $2,500 out of pocket, because the public system had not been able to provide it.

8.3 My own experience is adult, and I raise it only as illustration. The structural point applies identically to children. In regional and rural areas, workforce shortages, limited continuing professional development, and the absence of specialist supervision mean that clinicians assessing children may be applying frameworks the profession abandoned years ago. For regional families, the consequence is that a child’s diagnosis is delayed, denied, or available only through private practitioners in metropolitan centres at significant cost and travel. My son’s five-year gap between his autism diagnosis and the identification of his ADHD, during which he was prescribed antipsychotics, is what that looks like for a child.

8.4 The single-primary-diagnosis pathway compounds this. Neurodivergent children commonly present with co-occurring physical and medical conditions chronic pain, hypermobility, autonomic and gastrointestinal conditions among them which are frequently under-investigated. My son has suspected co-occurring physical conditions likely related to his AuDHD that remain unaddressed. When access is granted on a primary diagnosis only, everything else about the child goes unsupported.

8.5 A young witness told this committee that tying support to formal diagnosis creates a harmful binary between those deemed eligible and those left behind.⁸ My family demonstrates both sides of it: a son diagnosed at eighteen months who still could not get the right support, and two daughters who were never diagnosed at all.

9. Independent disability advocacy (terms of reference (b), (d)) 9.1 The route that should have caught what happened in 2022 independent disability advocacy was

itself overloaded to the point of being unable to help. The advocate I was eventually able to speak to was carrying approximately double the caseload recommended for the role. He explained that this was the result of state-wide administrative amalgamation that had reduced the number of disability advocates available, occurring at the same time that community need was rising.

9.2 The safety net was structurally too thin to catch us, not through any failing of the individual advocate. I raise this here because the amalgamation he described is a NSW decision, and because the transfer of children into NSW-delivered foundational supports from 2028 will generate demand for advocacy that the current system cannot meet.

10. The workforce (term of reference (g))

10.1 Support work is skilled work. It is also widely casualised, often underpaid relative to its actual demands, and frequently delivered by workers who have not received adequate training in the conditions of the children they support, in trauma-informed practice, or in working with neurodivergent people whose communication, sensory needs and regulation differ from a neurotypical baseline. Casualisation means no paid leave, no continuity of employment, and a workforce in chronic burnout.

10.2 The downstream consequences fall directly on children and on carers. In 2019, a support worker returned my son home in a state of panic because she herself was overwhelmed by the demands of a shift she was inadequately trained and resourced to manage. The carer in that situation absorbs not only the child’s distress but the worker’s, and is left to repair both.

10.3 What I described at paragraph 4.2 is the same problem seen from the other side. My son’s progress was carried by individual staff and left with them. A system that cannot hold a skilled worker cannot hold a child’s progress either. The committee’s Recommendation 14, a cross-sector workforce strategy including supervision supports and rural incentives, was supported only in principle.⁹ I ask that the final report press it harder.

11. Foundational supports and the Thriving Kids transfer (term of reference (h); Report No. 1, Recommendation 4)

11.1 The Commonwealth’s Thriving Kids model, released in February 2026, will divert children under nine with mild-to-moderate developmental delay or autism away from the NDIS, with implementation by January 2028.¹⁰ Those children will be supported, if they are supported at all, by state-delivered systems: NSW schools, NSW Health, NSW community services.

11.2 I set out my concerns about Thriving Kids in my Senate submission and do not repeat them in full here. In summary: the program has not been adequately co-designed with neurodivergent people; there is little published detail about what the supports will consist of; and the assumption that group-based parenting programs and upskilled mainstream workers can substitute for individualised allied health will fail children with co-occurring and complex presentations. Those children will be returned to the public systems that, as sections 4, 5 and 8 of this submission describe, are often clinically out of date and operate on frameworks that read neurodivergent traits as personality failings.

11.3 The point for this committee is different from the point I put to the Senate. NSW is the delivery state. The children being moved are being moved to you. And this committee’s Recommendation 4 co designed transition pathways with explicit safeguards so that no child’s essential supports are interrupted was not supported by the Government.

11.4 My son’s generation shows what interrupted and absent support produces. The children being moved between systems in 2026 2028 will live with the consequences for sixty or seventy years. There is no version of this transfer in which “some interruption” is acceptable. Interrupted support for a developing child is not paused. It is lost.

11.5 Finally, one structural risk that the transfer will create and that no current design addresses. Families who have reduced their engagement with services because those services harmed them families like mine will present, in any utilisation-based assessment, as families with low need. The very fact that we withdrew to protect ourselves from further harm will be read as evidence that we did not need help. Any NSW assessment framework for foundational supports must be calibrated against circumstance, not against utilisation data.

12. After the carer (term of reference (i)) 12.1 I am the child of immigrants who have both passed. My son has no family in his corner other than me. I frequently lie awake wondering what will become of him after I die.

12.2 The inquiry’s terms of reference speak of children and young people. Every one of those children has a trajectory, and at the end of many of those trajectories stands an ageing carer with no succession plan and no one to hand the work to. I am 55, disabled, and my son’s entire support system. Nothing in the system I have dealt with has ever asked what the plan is for the day I am no longer here to be it.

12.3 The committee has scope under term of reference (i) to say what the child-focused frame of this

inquiry otherwise leaves out: that a child’s supports are only as durable as the adult holding them in place, and that the state has never planned for what happens when that adult wears out.

13. A note on term of reference (e) 13.1 Term of reference (e) names Aboriginal Community Controlled Organisations. I do not speak to that. What those organisations need, and how foundational supports should work with them, are matters for those organisations to put to the committee in their own voice.

14. Closing 14.1 The committee heard the evidence in its first round and drew the right conclusions. The Government’s response chose not to act on the three that mattered most to families like mine. My family has already paid the price of that choice once, across two decades and three children. The children of 2026 should not pay it again.

14.2 I would welcome the opportunity to appear before the committee should it be useful.

Yours sincerely,

Pia Kyre

Port Macquarie, NSW

Notes

1. NSW Legislative Council, Select Committee on Foundational and Disability Supports Available for

Children and Young People in New South Wales, Foundational and Disability Supports Available

for Children and Young People in New South Wales: First report, Report No. 1, published 20 February 2026; NSW Government, Government response to Report No. 1, tabled subsequently in the Legislative Council.

2. Report No. 1, Recommendations 3, 4 and 13, pp xiii xv; Government response.

3. Pia Kyre, Submission No. 121 (submission and supplementary submission) to the Senate Standing Committees on Community Affairs, inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, May 2026; Pia Kyre, Submission No. 124 to the NSW Legislative Assembly Committee on Community Services, inquiry into the Human Rights Bill 2025, 2026.

4. Report No. 1, Finding 13, p xii; see also Findings 12 and 15.

5. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (2013).

6. Report No. 1, Finding 2, p x.

7. Report No. 1, Finding 3, p x.

8. Evidence of Ms Eliza Tait, Youth Action Member, Youth Action, 19 June 2025, cited at Report No. 1, paragraph 1.3, pp 1 2.

9. Report No. 1, Recommendation 14, p xv; Government response.

10. Report No. 1, paragraph 2.11, p 7, recording the Commonwealth’s August 2025 announcement of Thriving Kids, release of the model in early February 2026, and implementation by January 2028, delivered by state and territory governments.