Submission to the Inquiry into the Thriving Kids
Initiative
Submission author background
I am a parent of an 8-year-old child diagnosed with Autism LVL 3, ADHD, Avoidant/Restrictive Food Intake Disorder (ARFID, which can be life threatening if left untreated), agoraphobia, anxiety and has been assessed as ‘at-risk’ of specific learning disabilities. She also experiences ‘school-cant’ as a result of receiving improper support.
In late 2024, my daughter experienced a significant mental health crisis as a result of being treated as ‘not autistic’ or ‘mildly autistic’ or ‘not autistic enough’ by her teachers. At the time (and currently without NDIS) we were unable to afford even ¼ of the support she required.
This resulted in her developing agoraphobia and severe mental health crisis which meant she was deemed medically unfit to attend school for 5 months. At the time we were awaiting her NDIS application to be accepted, which highlights the systemic gaps in access to support for autistic children and their families. The continuous impact on all aspects of our lives has been enormous, including our family’s well-being, her education and sense of safety, our financial and housing stability, and our personal and community relationships.
We first raised concerns that our daughter was autistic when she was a baby and struggled to breast feed or be with others. Despite my partners attempts to seek help from hospitals, maternal nurses, and lactation consultants, we were dismissed, ignored, deemed emotionally unstable. One hospital staff member even shamed my partner and accused her as looking for an excuse to stop breast feeding so my partner could get more sleep. Age 6, we raised the same concerns with the school though they told us not to bother with getting her diagnosed as she ‘is so well behaved at school she never says a word’. All these people were unaware, ill equipped and wrong and caused huge barriers into getting an early diagnosis and early support. This is the same workforce you are relying on under the proposed reforms. My daughter is a prime example of what happens to children and families that do not receive the safe 1:1 tailored support they require.
The following text raises my concerns with the proposed Thriving Kids reforms, including concerns relating to equity, access, service delivery models, economic implications, and alignment with Australia’s international human rights obligations.
Disability-based discrimination and segregation, procedural fairness and risk of bias Inquiry evaluation
Autistic children and their families have been singled out for differential treatment in policy and proposed reforms due to the size of their representation in the NDIS. This
constitutes disability-based discrimination and segregation, which breaches the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), to which Australia is a signatory. o The reforms are economically motivated which is fundamentally wrong. Reforms should be based on reliable evidence, and safe and effective practices and be in the best interest of children and families both short and long-term.
Thriving Kids blanket assessment based on age or diagnosis is not an evidence informed way to determine a child’s suitability for NDIS.1
Autistic families and/or their representatives organisations have not been adequately consulted, in breach of UNCRPD requirement for involvement of Disabled People’s
Representative Organisations (DPROs).2
Rather than reducing cost, proposed reforms risk shifting expenditure to already financially stretched, under qualified, non-neuroaffirming and otherwise under resourced health, medical, education system and will exacerbate existing inequities. o Additionally, there has been no analysis of the risk of repeating old failings by reverting to a system that is similar to how autistic families were supported prior to gaining entry to NDIS.
I also have concerns that this Inquiry has not been well advertised and does not offer a meaningful consultation period, given the public notice period is brief. Therefore, limiting opportunity for many families, DPROs, and allied health professionals to engage fully.
Further, I have concerns relating to who has been appointed the Chair of this Inquiry. Dr Freelander has made public remarks that suggest predisposed views about autism diagnosis, which undermine his impartiality as Chair. The following commentary results in real risk that the Inquiry evaluation and final recommendations will be biased or framed to support predetermined reform agenda. o ‘Paediatricians warn too many children are being wrongly diagnosed with autism.’3
1 https://cyda.org.au/rushed-thriving-kids-rollout-risks-leaving-families-without-critical-support/
2 See Australian Human Rights Commission UNCRPD obligations
3 https://7news.com.au/news/paediatricians-warn-too-many-children-are-being-wrongly-diagnosed-with-autism c-19977416
o ‘I think there is pressure to up-diagnose…or over diagnose so that people can get access to a scheme that was not designed for people with mild or moderate developmental needs’.4 o ‘There’s no way that all of these children need intensive therapy’5 o ‘Unfortunately, we’ve set up a model that didn’t work in the first place and now we have to reinvent it’6 The Inquiry procedural concerns listed above compound the risk of discriminatory outcomes. They undermine the legitimacy of the Inquiry, and risk the Inquiry operating with inclusion, fairness and transparency.
There has been no public disclosure of the conflict of interest that are apparent within Thriving Kids. For example, Prof Andrew Whitehouse has a significant Applied Behaviour Analysis (ABA) practice and research background and those who have publicly endorsed early announcements also have either / and/or ABA backgrounds or connections to Whitehouse. o E.g. Nicole Rogerson CEO of Autism Awareness Australia (AAA) who has an ABA background supports Thriving Kids without mention that Prof Whitehouse is currently active Director of AAA.
Collapse of community support & workforce gaps
Eligibility of autistic kids into NDIS dismantled community-based early childhood supports, which have not been rebuilt. What workforce is expected to support autistic kids if they are shifted out of NDIS?
Mainstream workforce capacity is already at risk. There is also very limited neuro affirming training, especially given such training is not a mandatory requirement. Practitioners are undertrained, under-resourced, leaving children without safe or effective supports.
Public economic evidence suggests cutting NDIS supports will not yield in savings. In 2021, it was estimated that every $1 spent on NDIS retuned $2.25 to the Australian economy.7 Reducing NDIS investment would undermine both workforce growth and
GDP.8
4 As above 5 As above 6 As above 7 https://nds.org.au/news/new-modelling-shows-52-billion-benefit-of-ndis-sector-launches-election-campaign to-warn-of-impact-o 8 https://www.afr.com/policy/economy/moving-autistic-children-off-ndis-will-hit-gdp-goldman-sachs 20250825-p5mpiq https://pwd.org.au/we-will-be-watching-people-with-disability-australia-warns-against-cuts-to-the-ndis/
Applied Behaviour Analysis (ABA) Influence and the rejection of ABA in autistic community
ABA is increasingly challenged by autistic people, families and researchers. Concerns include: o ABA focuses on making autistic people ‘less autistic’ rather than offering neuro-affirming support that matches their needs.9 This can foster masking which research shows is linked to burnout, anxiety, depression, trauma, and suicidality.10 o Autistic people report negative experiences of ABA, describing it as coercive and traumatising. Some studies highlight long-term harms which as loss of autonomy, reduced self-esteem, and difficulties with identity and authenticity.11 o ABA is linked to the development of PTSD for some autistic people.12 o ABA is culturally insensitive, adopting a preferred communication style and prioritising Western compliance over wellbeing and identity. o ABA is inconsistent with right-based neuroaffirming approach and may breach UNCPRD. o Many ABA research studies do not assess adverse short or long term effects, causing ethical concerns.13 Despite these controversies the leading person behind the Thriving Kids initiative, Prof Whitehouse, is an ABA researcher and practitioner. The autistic community is extremely concerned about Prof Whitehouse affiliation with ABA and do not wish for their child[ren] to undergo ABA programs. Due to ABAs outcome in reducing autistic traits, it is likely Thriving Kids will result in delayed and incorrect diagnosis of children, which will inherently affect their ability to access safe and effective supports.
Issues with Thriving Kids program design to date
Inklings roots Early indications suggest the Thriving Kids program be modelled on Inklings, another ABA program focussing on reducing autistic traits. Inklings has limited evaluation, no-long term safety data, and places emphasis on ‘reducing autism’ rather than offering valid and necessary support to autistic children. This is ableist, harmful and inconsistent with the Inquiry’s term of reference on best-practice service delivery. Concerns raised in previous years by advocates have gone unaddressed.
9 https://childmind.org/article/controversy-around-applied-behavior-analysis/?utm_source=chatgpt.com 10 https://pubmed.ncbi.nlm.nih.gov/39139513/ 11 https://pubmed.ncbi.nlm.nih.gov/39139513/ 12 Kupferstei, H (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behaviour analysis 13 https://reframingautism.org.au/position-statement-on-therapies-and-interventions-updated-july 2022/?utm_source=chatgpt.com
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It has been suggested Inklings has been rewritten, meaning prior trial evidence may not apply.
Inklings lacks compliance with UNCRPD obligations requiring co-design with DPROs e.g. “Nothing About Us Without Us”
Other concerns relating to Thriving Kids model
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Thriving Kids appears to adopt a disease prevention model, framing autism as preventable or curable. This echos outdated and harmful theories such as ‘refrigerator parenting’
There is no credible evidence that autism can be cured or reduced at the benefit of the autistic person. Such framing promotes culturally unsafe practices and masking.
If Thriving Kids reforms adopt stricter eligibility, more assessments, more reductions or denials of NDIS services, a likely consequence will be an increase in NDIS Tribunals — meaning more legal costs and more burden on families. o In 2024-2025 the federal government paid big law firms $60m+ to fight NDIS participants, a significant increase from the $37m spend the prior year. !4
There are cohorts of autistic children that will fall through cracks under Thriving Kids and will lose access to vital support, such as twice exceptional or Autistic 2e children, autistic children who experience ‘school-cant’ (and therefore unable to receive support in school), autistic girls (who are harder to detect), autistic children with social anxiety and/or pathological demand avoidance (PDA) (and therefore unable to attend group setting), CALD and ABTSI autistic children and those living in regional and rural Australia.
A one size fits all community model cannot meet therapeutic need of children requiring 1:1 tailored support, whereby the child has the ability to establish safety and rapport with practitioners in environments controlled and deemed safe by the child.
Families will face increased financial burden due to Medicare caps, gap payments (which are unaffordable to many), and reduced NDIS access, leading to higher risk of crisis, especially as autism is rarely a sole diagnosis.
o Refer to background for my daughters diagnosis. Under Medicare there are a very limited number of subsidised sessions for allied health. Which complex need do I prioritise? Taking into account that the first two sessions are always in-take, information gathering and plan formation sessions, leaving you in
’4 https://www.theguardian.com/australia-news/2025/sep/24/federal-government-waging-lawfare-against disability-support-daunting-process-families-represent themselves#:~:text=Kate%20Lyons, tribunal%20representation%20the%20previous%20year.
some instances (such as OT, speech pathology and dietician) with only 2 subsidised sessions for actual treatment. Even for those who can afford the gap payment, this cannot meet therapeutic need.
Lack of meaningful early support has known links to family breakdown and child protection involvement.15
There will be a significant gendered cost of reform, whereby women and girls will be disproportionately affected. Below are extracts written by Heidi La Paglia, an autistic contractor, consultant rights advocate o ‘The majority of people that are being cut from the NDIS right now are children (Gingold, 2024), and when children are cut from the NDIS, it is overwhelmingly mothers who are forced to reduce or abandon paid work to take up the increased load of unpaid care responsibilities (ABS, 2019; NDIA, 2024). That loss of income has long-term effects: superannuation gaps widen, household poverty deepens, and women’s financial independence is eroded. For single mothers, this often means moving into cycles of poverty that are very difficult to get out of. At the same time, the disability support workforce, made up mostly of women, many disabled themselves, is facing job losses as smaller providers collapse under block funding and reduced therapy pricing caps (Butler, 2025; NDIAb, 2025). These are not just “jobs lost in the sector”: they are livelihoods in local communities, particularly in rural and regional areas where alternative employment is scarce and services are limited.’ 16
The reforms have had no prior consultation with autistic families or organisations that represent them prior to the Thriving Kids announcement, therefore already breaching UNCRPD.
The proposed reforms are not accepted by autistic community, with over 15,000 signatures (2 week timeframe) on one recent petition opposing Thriving Kids.17
The proposed timeline to adopt reforms does not allow for a smooth transition for families or efficacy and safety testing of the program.
Families with children over the age of 8 years old do not know how they are going to be supported.
15 https://disability.royalcommission.gov.au/publications/parents-disability-and-their-experiences-child protection-systems 16 https://www.linkedin.com/pulse/from-trump-thriving-kids-misogyny-autism-politics-blame-la-paglia fuctc/?trackingId=EMNnMNUzTu2B31mVz9uJ9Q%3D%3D 17 https://www.change.org/p/protect-autistic-kids-stop-the-thriving-kids-behaviour program?source_location=petition_update_page
Conclusion
The reforms risk embedding discriminatory, under-evidenced, and economically unsound practices into Australia’s disability landscape. Autistic voices have been sidelined, and discredited, harmful ABA-based approaches revived, and responsibility is being shifted to under-resourced systems. The program undermines Australia’s obligations under UNCRPD and risks severe harm to autistic children and families. One-to-one tailored, safe and neuroaffirming support, in environments that are safe for the child, is required for autistic children. Reforms should be based on benefit to the child, not economic savings and be in meaningful consultation with autistic community.