NDIA Accountability Project

Submission 152 — Australian Clinical Neuropsychology Association — Inquiry into the Thriving Kids initiative

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Submission to the Thriving Kids Inquiry by the Australian Clinical Neuropsychology Association (ACNpA)

The Australian Clinical Neuropsychology Association (ACNpA) welcomes the focus of the Thriving Kids Initiative on early, routine detection of developmental delay and the provision of timely intervention to support children and their families. Evidence demonstrates that early identification and support can be transformative, particularly for children with mild developmental delays who, with the right interventions, can achieve developmental milestones alongside their peers (Boyle et al., 2011; Guralnick, 2011).

However, we wish to highlight several critical considerations and potential risks, especially concerning children with more significant or global developmental delays and those with moderate to severe neurodevelopmental conditions.

Risks for Children with Moderate or Global Developmental Delay

The inclusion of moderate developmental delay, particularly when it is global in nature, raises significant concerns. Research shows that global developmental delay is frequently associated with conditions such as intellectual disability or specific learning disorders, which are typically lifelong and do not resolve with early intervention alone (Shevell, 2006; Leonard et al., 2011). These children will require ongoing, and often intensive, support throughout their lives. It is crucial that any changes to early intervention pathways do not inadvertently restrict access to the National Disability Insurance Scheme (NDIS) or diminish the level of support available to these children and their families.

Autism Spectrum Disorder and Lifelong Support Needs

We are also concerned about the inclusion of autism spectrum disorder (ASD) within this program. Autism is a lifelong neurodevelopmental condition; while early intervention can significantly improve quality of life and functional outcomes, it does not “resolve” the underlying condition (Zwaigenbaum et al., 2015). Furthermore, a substantial proportion of individuals with autism, estimates suggest up to 30-40%, also have an intellectual disability or other co-occurring conditions, particularly those with higher support needs (Baio et al., 2018). It is imperative that children who require substantial and ongoing support, are not disadvantaged by changes to early intervention or funding models. This would be particularly true for children currently supported by the NDIS who have Autism diagnoses designated as Level 2 or 3.

Local, Culturally Appropriate Support for Indigenous Communities

We see particular promise in the commitment to local-level support, especially for Aboriginal and Torres Strait Islander communities. Our members report that current models often rely on “fly-in, fly-out” therapists who may lack understanding of local cultural norms and community relationships, leading to interventions that don’t suit the local conditions, resulting in poor engagement (Dingwall & Cairney, 2010). Developing local capacity and co-designing services with families and communities is essential for effective and sustainable

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outcomes in managing the developmental health and disability needs of all Australian children, particularly in communities who face systemic disadvantages.

Equity and Access to Assessment and Support

ACNpA neuropsychologists witness daily the inequities in access to NDIS supports, where children from families with more resources—either financially or in time—are better able to obtain the comprehensive assessments required to demonstrate eligibility and advocate for appropriate supports. This results in significant disparities in the level and quality of support received, which does not always reflect the true needs of the child. We strongly support the focus on universal screening, and emphasise that this must be backed by access to thorough, multidisciplinary diagnostic assessments, including comprehensive neuropsychology assessment for identification of cognitive disabilities, to ensure equitable identification and support for all children.

We suggest a tiered screening process. Clinical neuropsychologists are experts in psychometric tools and cognitive tests and are well-placed to provide advice on appropriate screening tools for a broad range of conditions. Where children are screened as requiring further investigation, Thriving Kids should fund comprehensive neuropsychological assessments to clarify diagnosis and guide early intervention recommendations based on the severity of symptom burden experienced by each child.

Concerns About Potential Cost-Cutting and Reduced Support

We are concerned that the program, if not carefully implemented, could become a mechanism for cost-cutting, reducing the availability of intensive early intervention and lifelong supports for children with high needs. It is essential that any reforms do not compromise the quality or intensity of support for those who need it most. Clinical neuropsychologists are well-placed to provide insights into the early identification and appropriate intervention for children with developmental conditions and learning delays. As researchers and clinical practitioners, can contribute to the development of the Thriving Kids clinical protocols and procedures to assist in balancing cost-efficacy with targeted support.

Recommendations

  • Maintain clear pathways to lifelong support for children with moderate to severe or global developmental delays, intellectual disability, and autism, ensuring that early intervention does not replace but rather complements ongoing NDIS support.
  • Ensure universal screening is accompanied by accessible, comprehensive diagnostic assessment, particularly for families facing disadvantage.
  • Prioritise the development of local, culturally responsive services, particularly in Indigenous and remote communities, through genuine partnership and capacity-building.

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  • Monitor and evaluate the impact of reforms on equity of access, quality of support, and long-term outcomes for children and families.

ACNpA sees immense potential in the Thriving Kids Initiative, but also significant risks if the needs of children with complex and lifelong disabilities are not adequately addressed. As experts in neurocognitive development, we would welcome the opportunity to provide further input to ensure the program achieves its intended goals.

Dr Leonie Simpson, Clinical Neuropsychologist, DPsych (clin neuro)
Chair, Australian Clinical Neuropsychology Association

References

  • Baio, J., Wiggins, L., Christensen, D.L., et al. (2018). Prevalence of Autism Spectrum Disorder among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveillance Summaries, 67(6), 1–23.
  • Boyle, C.A., Boulet, S., Schieve, L.A., et al. (2011). Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008. Pediatrics, 127(6), 1034–1042.
  • Dingwall, K.M., & Cairney, S. (2010). Psychological and Cognitive Assessment of Indigenous Australians. Australian and New Zealand Journal of Psychiatry, 44(1), 20–30.
  • Guralnick, M.J. (2011). Why Early Intervention Works: A Systems Perspective. Infants & Young Children, 24(1), 6–28.
  • Leonard, H., Dixon, G., Whitehouse, A.J.O., et al. (2011). Unpacking the complex nature of developmental disorders. Journal of Paediatrics and Child Health, 47(4), 194–200.
  • Shevell, M. (2006). Global developmental delay and mental retardation or intellectual disability: conceptualization, evaluation, and etiology. Pediatrics Clinics of North America, 53(2), 1071–1089.
  • Zwaigenbaum, L., Bauman, M.L., Choueiri, R., et al. (2015). Early Identification and Interventions for Autism Spectrum Disorder: Executive Summary. Pediatrics, 136(Supplement 1), S1–S9.

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