NDIA Accountability Project

Submission 255 — Brain and Mind Centre, University of Sydney — Inquiry into the Thriving Kids initiative

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Brain & Mind Centre
Faculty of Medicine and Health

Prof Adam Guastella
Michael Crouch Chair in Child
And Youth Mental Health

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3rd October 2025

To the Committee,

RE: Inquiry into Thriving Kids

I am writing on behalf of the Clinic for Autism and Neurodevelopmental Research (https://www.canresearch.com.au/), the Child Development and Mental Health Team (https://www.sydney.edu.au/brain-mind/our-research/child-development/child-neurodevelopment-and-mental-health.html) and the Child Development and Mental Health Clinical Academic Groups (https://sydneyhealthpartners.org.au/clinical-academic-groups/child-development-and-mental-health/) at the University of Sydney. I am also writing as a representative of a national scientific collaboration, Neurodevelopment Australia (https://www.ndaustralia.com/).

Background

We support the aims of the Thriving Kids initiative. Delivering developmental assessment and support in the communities that families live in, in childcare centres, general practices, and schools, provides the best chance to reach children and families for early intervention and support.

The opportunity for Thriving Kids is to create real community partnerships that support children and families in an ongoing manner, where developmental needs can be identified and outcomes tracked to ensure children get the support and intervention they need. It is crucial that children and families receive high quality assessment and supports, but if delivered and structured well, many of these supports may not require specialists to deliver them. Fidelity will need to be maintained and training will be required to ensure services are of a high quality.

For this reason, expert guidelines, tools and resources will need to be made available to ensure best practice.

For this reason, we would like to draw your attention to the Australian Child Neurodevelopment Registry (ACNR). The registry uses existing private and public service data to drive an understanding of need and to optimise evidence-based process and outcomes that deliver effective and efficient developmental healthcare as early as possible. I believe ACNR could be a data resource to drive system improvements, create efficiencies in assessment and support and ensure that the needs of families are addressed using evidence-based practices.

ACNR is approved nationally for use in private and public neurodevelopmental services. It currently includes partnerships in New South Wales and Victoria, across seven local health districts, two hospital settings, multiple neurodevelopmental private clinics, and with a strong connection to primary care. This enables collaboration with neurodevelopment multidisciplinary experts who have supported families for decades and families and people with lived experience. This means we have the capacity through the registry to deliver expert tools and resources for use in communities and services that may not house that expertise. Such collaborations are proving fruitful to communities in Broken Hill, Orange, Central NSW and Shepparton where access to specialised supports are more limited.

We are currently in discussions with other states and services for extension of this registry and there is potential for national engagement. The aim of the partnership has been to work with clinicians, the community, and researchers to:

  1. Understand and ensure the needs of children and families are being met.

  2. Improve service processes through the introduction of digital tools that make processes more efficient, personalised and evidence based.

  3. Track outcomes over time to ensure families receive interventions that make a positive difference to the child and family.

  4. Use collected data to drive evidence-based practices across diverse communities and service settings.

Many of the children and families participating in the registry are from disadvantaged and diverse communities (regional, rural, significant cultural and linguistic diversity, first nations), which means the registry has access to families that are typically not represented in research and policy reviews.

ACNR collects data from the point that families initiate contact with a development service and follows the assessment and support journey until they exit services. This provides clinical and service data that can be used to optimise process and delivers

evidence-based outcomes1-5. It has led to the optimisation of assessments and delivery of supports to families in services including:

  • a) The Digital Swift Start and the Digi-Kids Hub: An assessment set that tracks child and family wellbeing and need and a digital response with recommendations when families are first referred for developmental delays. Families are then referred to a Digi-Kids Hub with trusted resources matched to their needs.
  • b) Digital Clinician Digital Support Aids: Assessment supports for clinicians that make assessment more efficient, to support decision making about child development, and to automate processes to support collation of information and feedback.
  • c) Report writing and recommendation supports: Platforms that support the writing of reports and recommendations based on existing guidelines for different audiences: teachers and educators, families, health practitioners and for legal purposes. The aim is to make sure the right information is provided in the most effective way to cause the greatest impact on outcomes.

Many system improvements in ACNR immediately change practice outcomes for families. For example, we recently developed a new child strengths checklist (the Child Autism and Neurodevelopment Strengths Checklist) directly from the data that families provided us6. This checklist is now used in all partnered clinics to identify and track strengths in children presenting for neurodevelopmental assessment. We are now developing guidelines for how such information can be used to promote strength-based assessments in developmental assessment services and developing evidence for how such work impacts child developmental outcomes.

With this background I now provide specific responses to the Terms of Reference provided by the Thriving Kids Initiative.

1. Examine evidence-based information and resources that could assist parents identify if their child has mild to moderate development delay and support parents to provide support to these children.

  • a) Mild and moderate will require sophisticated and evidence-based assessments and supports.

The use of the term mild and moderate autism and developmental delay has been used throughout the Thriving Kids Initiative. We have taken this terminology to differentiate from those children that may remain within the NDIS with a different level of support need.

The term should not be used to suggest that the needs of mild and moderate autism or developmental delay will be simple or focused on only a small number of developmental concerns and areas for intervention and support.

Assessments and supports will continue to require a high level of expertise to ensure that children receive the right assessment and support and the needs will require delivery of high-quality supports.

To illustrate, work in ACNR shows that caregivers of children present to developmental services with 33 different categories of concern. Some of the concern categories are traditionally associated with the description of an autism diagnosis, such as social and speech delays. Many of the frequent concerns raised by caregivers are focused on attention, cognition7, learning, sensory needs, eating difficulties, emotion regulation and mental health (e.g., anxiety and oppositional behaviours). To illustrate Over 50% of children attending with an autism diagnosis also meet clinical cut-offs for mental health conditions3.

As most children with neurodevelopmental needs have a complex presentation of physical, mental and behavioural needs, assessment must capture this breadth.

For this purpose, we have developed a needs checklist that lists the concern categories for integration in services. We highlight a nationally endorsed set of measures that have been recommended for transdiagnostic assessment of children with neurodevelopmental delays8. There are also agreed measures recommended internationally for tracking outcomes for children with developmental delays9,10.

Further work using collected data could be done to optimise the smallest number of items asked addressing concerns and developmental needs that could be used in primary care and community settings for screening for such purpose and to ensure that items chosen can best capture subsequent functioning impairments.

  • b) The purpose of child assessment needs to be clear and matched with developmental milestones

Historically, developmental assessment services have conducted a single assessment with many different goals for that single assessment1. This has made both the assessment process and the feedback for that assessment incredibly complicated. Some common examples and goals for a developmental assessment included a need to:

  1. Respond directly to the referrer or caregiver identified concerns.
  2. Promote access to funding pathways following the determination of a diagnosis.
  3. Provide assessment and feedback that empowers the family to support their child.
  4. Provide information to other professional supports to empower them to provide support.
  5. Provide a comprehensive assessment for developmental, mental and physical health needs, and their strengths.
  6. Develop a profile of strengths and supports needs relevant for schools and education environments so that best practice learning supports can be put in place.
  7. Identify existing supports and barriers to care for family units.
  8. Provide information relevant for medicolegal purposes.

Under the NDIS, services often focused on diagnostic outcomes as there was a perception that a diagnosis would increase funding and support options. This at times created confusion if families were expecting that they would receive learning and education supports for schooling.

For this reason, it will be important that Thriving Kids specifies the purpose of assessment. It would make sense that different types of assessments occur at different developmental timepoints to address the different needs. An assessment for developmental delays early in life should occur by age 3 and assessments for school and learning supports could occur at the time children start school. The specific criteria for activating or possible funding supports will then need to fit within the scope of the agreed assessments provided, rather than that generating its own assessment process that creates unnecessary efforts for families and services.

  • c) Thriving kids will need to promote thriving families.

Our data shows significant inequities in supports for children and families4,5. Families who have lower levels of education, from regional and rural communities, and those with existing mental health concerns show much greater delays in accessing support for their children. We have recently found that caregivers with their own mental health concerns take a year longer to receive a developmental assessment for their child.

We note that the Thriving Kids Initiative identifies the need to identify equity and intersectional issues. To do this, a support system that aims to support children will need to consider the additional support needs of families with additional vulnerabilities. Common target areas for different support needs will include parent training programs, financial supports, transport, service navigation, and mental health supports. Families also repeatedly raise respite as a category of needed support. Caregivers that can look after their own needs will then be able to support their children more effectively.

  • d) Digital tools can provide structure and frameworks to support families alongside services, but its unlikely they will be effective in isolation.

There is no question that digital interventions and supports have capacity to reach a larger number of families at a fraction of the cost of in person services. The international literature shows, however, that when used in isolation from services, digital tools are often not used and fail to deliver on their promise to create widespread improvements in healthcare11.

We recently conducted an evaluation of freely available resources (apps and websites) that provide support and actionable information to families about neurodevelopment, mental health and well-being12. Our review found that the vast majority of the 112 resources identified had high ratings on functionality and aesthetics, meaning they were engaging and user friendly for families. However, only 3/112 of these resources had any verifiable evidence that they actually helped families. This may reflect the lack of incentives to invest in research that demonstrates positive impact on outcomes.

Dynamic evaluation systems will need to be put in place to support the evaluation of digital tools, to ensure recommended tools impact families in a positive way. Our team has created a Child Digi-Kids Hub, which matches digital resources to child and family needs. It tracks use and response over time to determine whether these resources make a positive difference for families. There remains a significant need, however, to understand how use and suitability of resources differs according to the different backgrounds that families come from (e.g., different cultural groups or those in different regional areas).

  • e) The development of technology based new tools will change assessment practices.

Thriving kids assessments and tracking will need to incorporate new technologies that can provide assessment and supports to families using internet-based resources. We recently showed that machine learning algorithms applied to videos of children in play can be used to identify cases of autism13. We have also developed AI tools that show excellent reliability for identifying young autistic children against a neurotypical child.

Further work is still required to validate such technology in real world settings and with different diagnoses, but this case study illustrates that Thriving Kids assessments should be responsive to a growing evidence base that uses technology to deliver assessments swiftly, objectively, with ease, and in the home“. Such technology may not only be used to support a clinical decision for a diagnosis, but to track response to therapy over time.

2. Identify gaps in workforce support and training required to deliver Thriving Kids.

Demand for child developmental assessment has increased substantially over the last two decades, with rates of autism alone increasing by 787%, leading to a global health problem. Despite the rapid increase in demand for assessment and support, there has not been a commensurate increase in the clinical workforce.

As aresult, Australia is facing national, widespread shortages in clinical staff, healthcare workers, and educators. These shortages are particularly acute in rural and remote areas, and in key areas such as early childhood education, allied health, and mental health. Moreover, there is a lack of adequate training and awareness for key workers around how to identify developmental delays in children, and how to provide appropriate supports.

Addressing these gaps requires innovative approaches that leverage digital technologies, artificial intelligence, and analytics to ensure that appropriate assessments and supports are conducted in the environments where children live, grow, and thrive.

We have conducted a Survey across our multidisciplinary network of >130 clinicians who work across the community. The vast majority of these professionals report a need for digital tools to enhance service efficiency and responsiveness a major priority for their practice. Our work with ACNR to date has shown the opportunities for implementation of digital clinician support tools and automated/Al-informed reports and recommendations can provide:

  • Personalised recommendations based on integrating knowledge from guidelines and frameworks and personalised data collected from children and families.
  • Practitioner led, Al informed needs assessments to provide personalised recommendations and feedback that can evolve as children grow, and supervised by support teams and families.
  • Support tools that can train clinicians in assessment and support practices. This includes training to ensure interventions delivered have fidelity, enabling non-specialists to deliver high quality interventions.
  • Harnessing the potential of technology to upskill and build capacity for the workforce broadly, from early childhood educators to primary health providers.
  • Report writing and recommendation supports: Tools that support the writing of reports and recommendations based on existing guidelines for different

audiences: teachers and educators, families, health practitioners and for legal purposes.

3. Identify mechanisms that would allow a seamless transition through mainstream systems for all children with for children with mild to moderate support needs.

The Commonwealth could introduce digital mechanisms that bring together and link existing resources and support programs, enabling caregivers and families to manage their data and to interact with different systems (education, health etc) relevant to the developmental needs of the child. This would require more than the ability to link existing data sets but to creating new mechanisms that can be used to bring together information in real time, to interpret that information and to receive feedback for families, childcare and education and health services. Such mechanisms would enable families to be able to track the benefit of any intervention for the child and to receive support in an ongoing manner. It would also enable new knowledge to be integrated in a dynamic way so that families can receive information that is relevant for the current day.

We look forward to hearing more about the Thriving Kids Initiative and appreciate the opportunity to contribute our perspective.

Professor Adam Guastella

Michael Crouch Chair in Child and Youth Mental Health

University of Sydney

M: redacted

References

  1. Munro M, Boulton KA, Phillips N, et al. Quality and accessibility of written development assessment reports provided to caregivers in a publicly funded child developmental assessment service. Autism. Aug 2023;27(6):1764-1776. doi:10.1177/13623613221145868

  2. Patel S, Boulton KA, Redoblado-Hodge MA, et al. The Acceptability and Efficacy of Electronic Data Collection in a Hospital Neurodevelopmental Clinic: Pilot Questionnaire Study. JMIR Form Res. Jan 19 2021;5(1):e18214. doi:10.2196/18214

  3. Boulton KA, Guastella AJ, Hodge MA, Demetriou EA, Ong N, Silove N. Mental health concerns in children with neurodevelopmental conditions attending a developmental assessment service. J Affect Disord. Aug 15 2023;335:264-272. doi:10.1016/j.jad.2023.04.098

  4. Boulton KA, Hodge A, Levu K, Ong N, Silove N, Guastella AJ. Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry. Autism Res. Mar 2024;17(3):555-567. doi:10.1002/aur.3064

  5. Boulton KA, Hodge MA, Jewell A, Ong N, Silove N, Guastella AJ. Diagnostic delay in children with neurodevelopmental conditions attending a publicly funded developmental assessment service: findings from the Sydney Child Neurodevelopment Research Registry. BMJ Open. Feb 1 2023;13(2):e069500. doi:10.1136/bmjopen-2022-069500

  6. Boulton KA, Hankin L, Hodge A, Ong N, Silove N, Guastella AJ. Caregiver-Identified Strengths in Children attending their first neurodevelopmental assessment: Findings from the Sydney Child Development Research Registry. Autism. 2025;29(7):1769-1781.

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