NDIA Accountability Project

Submission 149 — Name Withheld — Inquiry into the Thriving Kids initiative

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Inquiry into the Thriving Kids IniƟaƟve Submission

I am a psychologist who primarily works with neurodivergent children and their families. I have seen how life changing services funded by the NDIS system has been for many of my clients and their families that could not have afforded the frequency and intensity of services needed to support their development and wellbeing. It is hoped that this support can conƟnue as part of the Thriving Kids iniƟaƟve.

However, it needs to be acknowledged the confusion, hurt, and trauma that the community is experiencing because of this decision and how it was delivered without warning and how it has perpetuated deficit-focused and incorrect language. It is important that this is heavily considered when making decisions about the Thriving Kids IniƟate. The lessons learned from the Royal Commission into Violence, Abuse, Neglect and ExploitaƟon of People with a Disability (2023) should also be at the forefront in the creaƟon and values of the iniƟaƟve. I would strongly urge the commiƩee to make children and their families voices the heart of the iniƟaƟve and emphasise the need for it to be co-designed, strengths-based, trauma-informed, neurodiverse-affirming, and to consider intersecƟonality.

The Thriving Kids IniƟaƟve needs to consider is how services are provided to those with a “mild to moderate developmental delay” and auƟsƟc children and their families. Although there are some communaliƟes, the needs of both populaƟons are not the same and therefore the supports required are not the same. There is risk of harm to these children if there is an assumpƟon of eligibility and what supports these children can access are streamlined. It is acknowledged as part of my submission that it is difficult to effecƟvely account for both auƟsƟc children and children with a “mild to moderate developmental delay.” Similarly, research that I have cited that has some value uƟlises ableist and pathologising language.

The Thriving Kids IniƟaƟve needs to consider the framework in how these services may be delivered. AuƟsmCRC have published the NaƟonal Guideline for supporƟng the learning, parƟcipaƟon, and wellbeing of auƟsƟc children and their families in Australia, which provides guidance on supports for auƟsƟc children and their families and the providers who are best suited to delivering the supports (Trembath, et al., 2022). Other frameworks into evidence-based supports and research have highlighted the importance of codesign, individualised, strengths-based, focus on supporƟng co occurring issues, and aligned with the social model of disability. In my experience, the supports need to prioriƟse children’s voices as well (Chown, et al., 2017; Lai, et al., 2020; & Zervogianni, 2020). There have been too many decisions being made that impact the lives of children without their voices being heard.

IntersecƟonality needs to be considered in the design of the Thriving Kids IniƟaƟve. Research has indicated that intersecƟonality factors (e.g., access to health care, access to treatment, societal expectaƟons and acceptance) significantly impacts the physical, mental health, and social outcomes for children (Weiss, 2024). Although most frameworks menƟon the need for cultural perspecƟves and inclusion, there is limited informaƟon and support to define and clarify cultural and contextual factors related to idenƟficaƟon and supports for auƟsƟc children and developmental delays (de Leeuw, Happe, & Hoekstra, 2023; Magana, Yu, & Al-Mamari, 2024; Mallipeddi & VanDaalen, 2022). This is oŌen confusing for parents and families to understand when they should be concerned about their child’s development and when their child’s perceived difficulƟes may be explained by cultural differences.

The Thriving Kids IniƟaƟve needs to consider is how those whose disability or delays impact appears ‘hidden’ are best supported. These are children who appear to present well but highly mask their traits that differ from societal expectaƟons or whose capacity fluctuates regularly. There is risk for a significant gap in services for these children and their families to emerge if the primary focus is on children with “mild to moderate developmental delay” irrespecƟve of whether they have auƟsm. For these children, there is a significant increase in the prevalence of chronic illness, mental health condiƟons, suicidality, burnout, and impact to daily living (e.g., school aƩendance, achievement, relaƟonships with their family and peers, daily living skills, and community engagement) (Ahtoy, 2024; Croen, et al., 2015; Higgins, et al., 2021; Newell, et al., 2023; Morina, 2022; & O’Halloran, et al., 2022).

Many reviews of “evidence-based” auƟsm intervenƟons sƟll recommend intervenƟons that only teach auƟsƟc children to mask and camouflage. More recent research has shown that this only leads to auƟsƟc burnout, auƟsƟc shame and negaƟve self-worth, and reinforces the belief that auƟsƟc behaviours are maladapƟve and should be changed. Finally, the skills that the children learn are likely only applicable within the developmental period, so we risk a wait to fail approach where a child gets to a developmental period and the skills they learned are no longer working. An auƟsƟc person will always be auƟsƟc, regardless of how much “social skills training” you deliver. Supports for auƟsƟc children should not focus on treaƟng symptoms of auƟsm. Instead, the most effecƟve supports focus on:

  • educaƟng children and their families about auƟsm and co-occurring condiƟons.

  • emphasise the social model of disability.

  • Affirming the child’s needs and reframing language to be more affirming and strengths- based.

  • developing self-advocacy skills and also advocate for their clients.

  • acknowledging the significantly higher prevalence rates of health issues, mental health concerns, social barriers, community barriers, and reduced opportuniƟes. And tailor these treatments in an affirming, trauma-informed, and culturally-competent manner.

  • acknowledging that disability and mental health cannot be neatly separated. Many children experience mental health challenges as a funcƟonal consequence of their disability. As an aside, there is a gap with services where an auƟsƟc child or child with a disability presents with complex mental health needs or suicidality. Services that could provide these services (e.g., state health department services) appear to not be well equipped or have the scope of pracƟce to cater for their needs. This results in these children being denied services or experiencing further trauma of ineffecƟve and harmful service delivery.

  • modifying the environment and changing systems to beƩer cater for every child’s needs.

  • emphasise and properly fund interagency partnerships, in parƟcular, collaboraƟon with schools.

  • understanding the double empathy problem and reducing the rhetoric that these children need to go to these services. Instead, we need to be beƩer equipping the community and systems to be more inclusive. For example, so much wasted Ɵme has been spent teaching auƟsƟc children that they need to use neurotypical social skills. Instead, we should be teaching others about auƟsƟc social skills and social issues being a shared responsibility.

  • Support the parental and caregiver burnout in supporƟng their child, navigaƟng and accessing supports, processing their grief and loss (e.g., loss of idenƟty, parental shame and guilt, significant lifestyle changes, and financial stressors).

How and whom are the best pracƟƟoners and agencies to provide these services should be considered. More than half of providers of therapy supports through NDIS are sole traders and is an area of significant growth (NaƟonal Disability Insurance Agency, 2025). However, most NDIS parƟcipants are provided services through a company (NaƟonal Disability Insurance Agency, 2025). This more or less makes sense as companies hire mulƟple providers and as such can service more parƟcipants. It also indicates a community preference to consider sole-providers rather than engaging in companies. I hypothesise that sole-providers oŌen implement systems that are flexible, more individualised, more effecƟvely take into consideraƟon people’s individual circumstances, and provide services that can uƟlise their full skill sets. As such, the Thriving Kids IniƟaƟve should consider the demographics of whom are already providing high quality services to auƟsƟc children and children with mild to moderate developmental delays” and understand why some providers prefer to work as a sole provider.

For myself, I choose to work as a sole-provider as I work best when I can uƟlise my skillset effecƟvely, fully embrace and embolden my values and ethical pracƟce, and account for my own individual needs where I need flexibility in my workplace. I suspect I am not alone in this senƟment. I believe that providers of services and allied health professional who already provide the services to these populaƟons should be consulted with as there is risk that the community could lose high quality effecƟve providers should the iniƟaƟve be too narrow in how they deliver services (e.g., uƟlise tender processes or require services be delivered by state government agencies).

Similarly, The Department of Health, Disability and Ageing (2024) released the Unleashing the PotenƟal of our Health Workforce – Scope of PracƟce Review in October 2024 which found that majority of health professionals experienced some restricƟon or barrier to work at their full scope of pracƟce and there is limited awareness of health professionals’ scope of pracƟce. I have noƟced this within the community who accesses or provides NDIS supports. There is significant confusion between how health professionals deliver parƟcular services. For example, I have experienced countless barriers where there is a misunderstanding of how psychologists implement intervenƟons and how psychology and other health services complement each other’s work.

In summary, there is significant stress from the community, parƟcipants who are accessing NDIS services who be asked to transiƟon to the Thriving Kids IniƟaƟve, and providers of NDIS services. I hope that the Thriving Kids IniƟaƟve results in:

  • beƩer funded services that are affirming and uƟlise a social model of disability for auƟsƟc children, children with “mild to moderate developmental delays,” and their families;

  • more culturally competent pracƟces and increased understanding of the impact of intersecƟonality;

  • community and system level change rather than solely be focused on providing services to this populaƟon;

  • addressing the trauma and sƟgma experiences by these children and their family;

  • incorporaƟng the breadth of professionals whom already provide effecƟve services;

  • providing clarity of health professionals’ scope of pracƟce to reduce role confusion.

References

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Chown, N., Robinson, J., Beardon, et al. (2017). Improving research about us, with us: a draŌ framework for inclusive auƟsm research. Disability & Society, 32(5), 720–734. hƩps://doi.org/10.1080/09687599.2017.1320273

Croen, L. A., Zerbo, O., Qian, et al. (2015). The health status of adults on the auƟsm spectrum. AuƟsm : the internaƟonal journal of research and pracƟce, 19(7), 814–823. hƩps://doi.org/10.1177/1362361315577517

de Leeuw, A., Happé, F., & Hoekstra, R. A. (2020). A Conceptual Framework for Understanding the Cultural and Contextual Factors on AuƟsm Across the Globe. AuƟsm research : official journal of the InternaƟonal Society for AuƟsm Research, 13(7), 1029–1050. hƩps://doi.org/10.1002/aur.2276

The Department of Health, Disability and Ageing (2024). Unleashing the PotenƟal of our Health Workforce – Scope of PracƟce Review. Retrieved from hƩps://www.health.gov.au/resources/publicaƟons/unleashing-the-potenƟal-of-our-health workforce-scope-of-pracƟce-review-final-report

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Lai, M., Anagnostou, E., Wiznitzer, M., et al. (2020). Evidence-based support for auƟsƟc people across the lifespan: maximising potenƟal, minimising barriers, and opƟmising the person–environment fit. The Lancet Neurology, 19(5), 434-451. hƩps://doi.org/10.1016/S1474-4422(20)30034-X.

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O’Halloran, L., Coey, P., & Wilson, C. (2022). Suicidality in auƟsƟc youth: A systemaƟc review and meta-analysis. Clinical Psychology Review, 33(8), 1197-1204. hƩps://doi.org/10.1016/j.cpr.2022.102144.

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