Submission 347 — Name Withheld — Inquiry into the Thriving Kids initiative | External submission

Committee Secretariat

P.O. Box 6021

Parliament House

Canberra ACT 2600

Date: 1 October 2025

Introduction I am a single parent and full-time carer of two children with complex disabilities, . Both of my children are diagnosed with Level 3 Autism Spectrum Disorder, ADHD, sensory processing disorder, and severe anxiety. My daughter also has a PDA profile and a critical medical diagnosis of Type 1 Diabetes, which exacerbates her autism symptoms and emotional dysregulation.

I actively contribute as part of the NDIS Co-Design Children’s Pathway Parent and Carer Engagement Group, contributing to the development of policy and system design from a parent and carer perspective.

I am making this submission to raise serious concerns about the Government’s proposal to remove children with “mild to moderate” autism and developmental delay from the NDIS and place them under the new Thriving Kids program.

This change, if implemented without safeguards, will have devastating consequences for children like mine throughout the country — children like mine already excluded and traumatised by the education system, living with the compounded impacts of disability, systemic failures and trauma.

I make this submission in writing and respectfully request the opportunity to also appear before the Committee to present my submission verbally.

Evidence from Lived Experience My son was unlawfully segregated in a storeroom for six months, bullied by staff and students, and unlawfully suspended in breach of Ministerial Order 1125. My daughter was traumatised by bullying in the same school, a school environment that could not meet the needs of either of my children and ultimately forced into home education and further social isolation.

The Department of Education and Training (DET) failed both my children, leaving them unable to attend school safely. This harm has lifelong consequences — developmental delays, loss of learning opportunities, and ongoing trauma to name a few.

We are also survivors of family violence. We live under the protection of a Family Violence Intervention Order (FVIO). My children lost their eldest brother, I lost my eldest son, in tragic circumstances, which has left us with complex grief and fear, further exacerbating the children’s autistic and behavioural symptoms.

The NDIS is not just about therapies — it is the support structure that allows us to survive and slowly

navigate our lives through complex disabilities, constant medical fragility, isolation and the disconnection from community that so many families like ours experience.

Regional and Remote Barriers

to the nearest major NDIS service hub. Due to state border restrictions, families in the region are unable to access service providers that are geographically closer but located across the border, resulting in significant inequality of access.
There are sparse local therapy providers and qualified support workers, and certainly no specialist programs.
Visiting services are irregular, often booked out, and unaffordable without NDIS support for travel and flexibility.
Families in remote areas face geographic discrimination if they are pushed into generic, block-funded services that simply don’t exist locally.

Financial Inequality Families like mine live on Carer Payment and Family Tax Benefit, with no capacity for paid employment due to 24/7 caring duties. I have no informal supports so the NDIS support is our lifeline.

Private therapies cost $180–$250 per session. Without NDIS, these are impossible.
Fuel, meals, and accommodation to access distant services are unaffordable and are not funded NDIS support to access these services.
Hidden costs of care (sensory aids, equipment, safety modifications etc) are non-negotiable but out of reach for low-income households.

If Thriving Kids does not match the NDIS in flexibility and funding, it will entrench a two-tier system: wealthier families will continue to access private therapies, while disadvantaged families will fall into deeper poverty and exclusion.

Exclusion and Isolation Families like mine already live with extreme exclusion and isolation.

Education exclusion: My children were denied access to safe, inclusive schooling due to DET negligence and incompetence. Instead of belonging in classrooms with adequate support, segregation, bullying, discrimination and trauma was the result. Ultimately, their intent was to force us out of the school system.
Community exclusion: Given the small community we reside, the bias stemming from the school and no local programs in that support children with autism, my children miss out on sport, recreation, and forming friendships. Without NDIS funding to access inclusive programs and bridge these gaps, isolation becomes permanent.
Systemic exclusion: Moving children from the NDIS into Thriving Kids — before services exist, before equity is guaranteed — risks compounding this isolation. Families will be trapped with nowhere to go and no pathway to thrive.

Response to Terms of Reference ToR 1: Evidence-based information and resources Autism is not “mild” for children. Every day requires intensive support: constant supervision, sensory regulation strategies, and emotional support. My daughter’s Type 1 Diabetes adds life-threatening risks, with blood glucose drops one to three times most nights. These episodes directly exacerbate her ASD symptoms

and emotional regulation difficulties the following day. When her blood sugar is unstable, her ability to cope with transitions, tolerate sensory input, and regulate emotions is severely compromised. This daily reality demonstrates why autism and co-occurring conditions require flexible, ongoing supports that go far beyond ordinary parenting.

ToR 2: Effectiveness of current programs The contrast between DET and the NDIS is stark in our lives. DET failed to provide even basic inclusion: my son was fully segregated in a storeroom, bullied, restrained by unqualified and incompetent staff and was neglected in many aspects. My daughter was bullied and traumatised. In contrast, the NDIS has been effective because it allows me to secure therapy, assistive equipment, and support workers tailored to their actual needs. Without this flexibility, my children would be permanently locked out of both education and community.

ToR 3: Equity and intersectional issues Our family experiences multiple layers of disadvantage: we are remote, low-income, and survivors of family violence. We also live with the grief of losing my eldest son in traumatic circumstances. These intersections amplify exclusion. Without NDIS supports, my children’s isolation would be absolute. Geographic, social, and emotional barriers compound to create a level of exclusion that mainstream or block-funded services could never bridge.

ToR 4: Workforce support and training gaps Workforce shortages make daily life harder. In , there are no local psychologists, speech therapists, or autism related programs. Visiting providers come irregularly and are already overwhelmed. Even if Thriving Kids was block-funded here, there would be no workforce to deliver it. Without targeted training and recruitment strategies, children in remote communities like mine will continue to miss out, fall through the gap and remain isolated.

ToR 5: Domestic and international policy experience Best practice, both in Australia and internationally, is clear: disability supports must be individualised, flexible, and inclusive. Systems that rely on block funding or generic programs consistently fail children with complex needs.

a. Lived Experience Evidence From my own life, I know that “one-size-fits-all” systems don’t work. DET attempted generic classroom solutions and it resulted in segregation, restraint, and trauma for my children. In contrast, the NDIS works because it allows individualised supports — therapies, equipment, and community access — that respond to each child’s unique needs.

b. Official Reports and Policy

The NDIS Review Final Report 2023 recommended that any changes must protect individualised supports and be carefully staged to avoid harm.
I contributed to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023) where I provided evidence of the harm caused by the DET negligence and systemic exclusion of autistic children. The Royal Commissions final report echoed what I and many other families shared; children are at risk when they are excluded from flexible supports and forced into mainstream systems that are not prepared, competent or safe for autistic children.
The Australian Human Rights Commission has repeatedly stated that choice and control are central to upholding the rights of people with disability.

c. Policy Principles Internationally, principles of choice, control, and individualisation are recognised as best practice in disability policy. Countries that embed these principles see stronger inclusion, better family satisfaction, and

more sustainable outcomes. Thriving Kids must be designed with these principles at its core, not as an experiment in cost-cutting.

It is clear: best practice reform means protecting the principles that work — individualisation, flexibility, and co-design. Families like mine cannot risk losing the only system that has kept our children safe, included, and supported.

ToR 6: Mechanisms for transition My lived reality demonstrates why any transition must be slow, staged, and evidence-based. For my children, sudden loss of NDIS would mean the collapse of their only support system. Long-term, this would deny them the chance to build independence, social participation, and a pathway to employment. The transition must not only preserve current supports but actively prepare children for adulthood, so the system does not trap them in lifelong dependency.

I recommend:

A staged rollout: metro → regional → remote, each stage lasting 2 years minimum.
Independent and publicly available review after each stage, measuring both positive and negative outcomes.
No child loses supports until services are fully funded, adequately staffed, and proven effective.

Recommendations I urge Parliament to:
Retain autistic children within the NDIS unless and until Thriving Kids is fully co-designed, transparent, and proven effective.
Ensure co-design with autistic people, parents, carers, and clinicians — not only bureaucrats.
Guarantee equivalence of funding and flexibility for children in remote and regional areas.
Establish clear, evidence-based criteria that respect autism as a permanent disability, not a spectrum of “service worthiness.”
Create strong transition protections: no child should lose therapies, education supports, or access to community participation during any rollout.
Ensure that every child already excluded from the school system are not further excluded from disability supports.
Ensure regular independent monitoring and public reporting of outcomes, so families and Parliament can see what is working and what must be improved.
Require staged rollout with independent reviews to ensure safety and effectiveness.
Protect children already excluded from school by guaranteeing continuation of their NDIS supports until Thriving kids proves effective.
Conclusion The NDIS has been a lifeline for my family. Removing autistic children into Thriving Kids before it is proven will devastate families already failed by the education system and isolated geographically. I urge Parliament to act with compassion, accountability, and with courage to protect autistic children by ensuring reforms are co-designed, evidence-based, and sustainable. No child should be harmed or further excluded under Thriving kids.

I ask the Committee to ensure that reform is evidence based, staged and co-designed, so that no child is harmed or further excluded under Thriving kids.

Request to Appear I respectfully request that this submission be accepted both in writing and verbally. I wish to attend Parliament and present my submission in person, to ensure that the lived experiences of families in remote communities are fully heard and understood.

Kind regards,