Submission to the House of Representatives Standing
Committee on Health, Aged Care and Disability
Submitted by: [Name Withheld for Privacy] Date: 2 Oct 2025
Lived Experience
Introduction
We are long-term carers of a child on the Autism Spectrum with a Pathological Demand Avoidance (PDA) profile who has also experienced early trauma. Our child has been failed by both the education system and the child protection system.
This submission shares our experience and highlights systemic reforms needed for Thriving Kids to succeed. Without reforms that are trauma-informed, neurodiversity-affirming, and backed by independent oversight, Thriving Kids risks repeating harmful patterns that have already caused irreparable harm to our child.
- Masking and Post-Masking Dysregulation At school, our child presented as “fine” because he masked distress. Teachers described him as coping. At home, however, the mask collapsed—he became violent, dysregulated, and emotionally exhausted.
Masking is not resilience. Research shows it is linked to anxiety, depression, burnout, and suicidality (Hull et al., 2017; Cook et al., 2021). Families, like ours, bear the consequences in private, while schools insist needs are met.
Recommendation: Thriving Kids must recognise masking and post-masking dysregulation as indicators of high need, not evidence of coping. Parents’ experiences must be heard.
- PDA and Trauma Profiles Our child’s PDA profile meant everyday demands triggered extreme anxiety and avoidance. Compliance-driven strategies made things worse. Despite professional advice, school leadership dismissed PDA-informed approaches.
Children with PDA require low-demand, flexible, trauma-informed practice (Fidler & Christie, 2019; Bath, 2008). Without it, distress escalates into aggression and school refusal.
Recommendation: Mandatory PDA-specific and trauma-informed training for all frontline professionals.
- Failures of the Education System
Our child has been unable to attend school for some years after being placed in an environment that was unsafe and unsupported. He has not regained his functional capacity.
This shows the real and lasting costs of system failures — not just to families, but to government systems. When schools cannot or will not meet complex needs, children disengage entirely, and their reliance on disability supports inevitably increases.
Recommendation: Thriving Kids must ensure schools are resourced, trained, and accountable for embedding therapeutic recommendations, so that disengagement and functional loss are not the outcome.
- Failures of the Child Protection System Despite clear evidence of harm, statutory authorities required our child to return to a school environment that could not meet his needs. When therapists advocated for different arrangements, their involvement was ended, leaving our child without therapeutic support for an extended period.
Continuity of therapeutic relationships is vital; disruption retraumatises children and undermines progress (Perry & Szalavitz, 2017). This illustrates a structural conflict of interest where authorities act both as parent and decision-maker, without independent oversight.
A further barrier is the lack of disability knowledge within child protection. In our experience, caseworkers and managers in out-of-home care rarely have training in autism, PDA, or trauma-informed disability practice. Nor do they understand how to navigate the NDIS or link children to appropriate supports. This leaves carers unsupported and children without the services they are entitled to.
Recommendation:
Establish independent oversight of child protection decisions, particularly where they override clinical recommendations. Require all child protection staff, including caseworkers and managers, to receive mandatory training in disability, neurodiversity, and navigating the NDIS and/or the new Thriving Kids pathway, so they can make informed decisions that safeguard children’s rights.
- Therapeutic Continuity and Belonging When trusted therapists were removed, our child’s progress collapsed. Trusted relationships are essential for belonging and developmental outcomes (Baumeister & Leary, 1995; Shonkoff & Phillips, 2000).
Recommendation: Guarantee continuity of therapeutic care; prioritise programs that foster belonging over compliance.
- Carer Burnout and Family Impact
As carers, we were left to manage extreme behaviours without system support. This placed us at risk of burnout, depression, and family breakdown.
Research confirms that parent stress is strongly linked to child outcomes (Neece et al., 2012). Families of autistic children face higher rates of financial strain, workforce exit, and isolation (Hayes & Watson, 2013).
Recommendation: Thriving Kids must embed carer supports, including respite and mental health services.
- System Misalignment Our child was caught between systems:
Education refused to adapt. Therapists advocated for alternatives. Authorities overrode and silenced them.
Fragmentation across education, health, and child protection is a known driver of poor outcomes (Productivity Commission, 2017).
Recommendation: Thriving Kids must mandate integrated cross-sector planning with shared accountability.
7a. A Failure to Deliver on National Commitments
Our experience is not unique. The Shut Out report (2009) documented families excluded from schools, denied supports, and left to carry the burden when systems would not adapt.
The National Disability Strategy (2010–2020) and its successor, Australia’s Disability Strategy (2021–2031), promised inclusive education, coordinated supports, and recognition of carer wellbeing. Yet our child has been out of school for some years, has lost functional capacity, and relies more heavily on disability supports because the education system failed to support him.
This shows that national commitments remain unfulfilled. Unless Thriving Kids addresses these failures, it risks becoming another aspirational framework that does not deliver for families.
- System Readiness and Safeguards
Our child’s trajectory shows that system failures carry real, measurable costs. His long-term school disengagement, ongoing loss of functional capacity, and increased reliance on formal supports are direct outcomes of being placed in environments that could not meet his needs.
This is a warning: unless Thriving Kids is fully funded, operational, and equipped with flexible supports, children like ours will be harmed. Families will be left carrying the burden, and government systems will ultimately absorb higher costs through crisis interventions, increased service reliance, and worsening mental health outcomes.
Separating children into “mild, moderate, or severe” is clinically unsound. Capacities fluctuate, and children often “do well” only because supports are in place (Shattuck et al., 2007). Removing supports risks regression and harm.
Recommendation:
Maintain NDIS and other disability supports until Thriving Kids is fully implemented and independently evaluated. Reject “severity” categories; focus on functional needs over time. Ensure Thriving Kids engages directly with families and practitioners to co-design flexible, responsive supports.
Conclusion
Our child’s story demonstrates the human and financial costs of systemic failure. He has not attended school for some years, has lost functional capacity, and now relies more heavily on disability supports because systems would not or could not meet his needs.
Thriving Kids has the potential to deliver meaningful change, but only if:
It is fully funded, developed, trialled, and independently evaluated before children are removed from existing supports. It engages directly with families and practitioners. It embeds neurodiversity-affirming, trauma-informed practice system-wide. It guarantees continuity of therapeutic care. It provides flexible supports able to meet the needs of complex children.
System failures have real costs — to children, families, and the state. Thriving Kids must not repeat them.
Signed,
[Name Withheld for Privacy]