Submission No 113

INQUIRY INTO FOUNDATIONAL AND DISABILITY SUPPORTS AVAILABLE FOR CHILDREN AND YOUNG PEOPLE IN NEW SOUTH WALES

Organisation: Brain and Mind Centre, Faculty of Medicine and Health, University of Sydney Date Received: 16 September 2026

Brain & Mind Centre Faculty of Medicine and Health

Level 2, 100 Mallett St

CAMPERDOWN NSW 2050 AUSTRALIA

16 September 2026

To The Select Committee

RE: Select Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales

We are writing in response to the above inquiry. We provide an executive summary of our recommendations and a more detailed response below.

Executive summary and recommendations

NSW should design foundational supports as a statewide learning health and social care system, rather than an expansion of disconnected services. A common framework should use information about children’s strengths, needs, functioning and family circumstances to guide navigation and support, measure outcomes routinely, adjust care according to response, and continuously improve through embedded evaluation.

Establish a statewide learning system. Create a common framework linking assessment, navigation, service delivery, outcomes and evaluation across mainstream, foundational and specialist supports.
Make needs-led stepped care operational. Use developmental and needs assessments, alongside strengths, functioning, family priorities and context, to guide initial support and adjust its type and intensity according to response.
Invest in clinical knowledge hubs. Enable specialist services to support community and primary-care providers through training, supervision, consultation and clear referral pathways for children with greater complexity or specialised needs.
Build interoperable digital and data infrastructure. Support common assessment, coordinated navigation, routine outcome monitoring and shared decision-making while reducing duplication across services.
Embed independent evaluation from the outset. Use routinely collected data, together with independent multidisciplinary clinical and research expertise, to determine what works, for whom, at what intensity and in which communities. Independent evaluation will strengthen transparency and trust, inform commissioning and service improvement, and support increasingly personalised care.

A learning system for Thriving Kids

Thriving Kids and foundational supports offer NSW an opportunity to do more than introduce another program or funding stream: they can establish a system that learns from every child and family. Strategic investment in clinical knowledge hubs, interoperable digital and data infrastructure, and embedded evaluation would create a continuously improving learning health and social care system.

In such a system:

families describe their child’s strengths, needs and priorities when they first seek help;
services use this information, together with clinical expertise and evidence, to match families to appropriate supports, taking account of family context and preferences;
specialist knowledge hubs support community providers and children with greater complexity;
outcomes are routinely measured through digital systems to determine whether support is working;
data and modelling inform decision-support tools that strengthen evidence-based care and clinical decision-making;
the intensity or type of care changes according to response;
embedded research continuously improves the evidence about what works, for whom, and in which communities.

Many of the capabilities needed to achieve this already exist, including the Australian Child Neurodevelopment Registry (ACNR), Neurodevelopment Evaluation and Support Tools (NEST), the Growing Minds Australia clinical trials network, specialist clinical services and clinical-trials partnerships. Together, they demonstrate that this approach is achievable.

Detailed response

We strongly support reforms towards earlier, locally delivered and needs-based developmental supports for children and families, including the use of assessment and outcomes data to help provide the right type and intensity of support, in the right place, as early as possible.

Turning this principle into an effective system requires more than expanding access. Current proposals do not yet clearly describe how support will be personalised to individual children and families, how its type or intensity will change when needs or responses change, or how services will learn which interventions work, for whom and under what circumstances. A framework is also needed to extend specialist clinical knowledge into community and primary-care settings so that high-quality care is available regardless of location.

We propose that NSW build foundational supports as a learning health and social care system in which children’s and families’ needs guide access to personalised support, while routinely collected outcomes and embedded, clinically meaningful evaluation continuously improve care.

This would make needs-led, personalised stepped care operational. Rather than diagnosis alone determining access, a child’s strengths, needs, functioning, family priorities and circumstances would inform initial support. Outcomes would then guide whether support should be increased, changed or reduced. In partnership with families and diverse communities, the system would improve as evidence about optimising care accumulates.

Existing capabilities demonstrate feasibility

NSW can build on capabilities already operating in practice. One example is the Australian Child Neurodevelopment Health Learning Network, a partnership of clinicians, researchers, families and community organisations using data and research to improve and personalise care.

At the centre of this network is the Australian Child Neurodevelopment Registry (ACNR), Australia’s largest clinical-research infrastructure for child neurodevelopment embedded within public and private health services. Housed at the University of Sydney, ACNR integrates clinical, research and linked data across participating services to support evaluation, research and service improvement. It is diagnosis-agnostic, capturing developmental, mental health and functional concerns relevant to clinical care and child and family wellbeing.

The network currently spans 10 Local Health Districts across New South Wales and Victoria, with services in Queensland and Tasmania also in discussion to participate. It has scaled with limited funding, supported by strong commitment across partner services to improve care for children and families.

The platform covers the levels of care and referral pathways described in the Agency for Clinical Innovation developmental framework and the clinical practice guide for children aged 0-5 years presenting with developmental concerns. Participating families reflect the

diversity of the Australian community, including strong representation from Aboriginal and Torres Strait Islander families, culturally and linguistically diverse communities, and families experiencing socioeconomic disadvantage.

Trust and partnership with families have been fundamental. More than 5,000 families have entered the national registry, with withdrawal rates below 10% across services. This demonstrates a willingness to contribute information to service improvement when appropriate governance and safeguards are in place. At the same time, sufficient independence from individual clinical services is essential for rigorous and transparent evaluation of services and new models of care.

These examples show that NSW need not build an evidence system from the ground up. Existing capabilities provide practical building blocks, but the recommendation is broader: government should invest in three interconnected statewide capabilities, with implementation guided by interoperability, public value, community partnership and rigorous governance.

We propose investment in three interconnected capabilities:

Clinical knowledge hubs that bring specialist expertise into community care

Clinical services and multidisciplinary teams are essential to a learning health system. Their leadership helps ensure that the questions asked, information collected and interventions evaluated are clinically meaningful and fit for purpose.

Child Development Services within the Sydney Children’s Hospitals Network, for example, bring together multidisciplinary expertise in child development and provide statewide leadership through combined paediatric and psychiatric clinics, genetics, school-based clinics and hybrid models including telehealth for rural and remote communities. In partnership with the University of Sydney, these services have developed and evaluated telehealth and collaborative models to improve equitable access to assessment and support (Hodge, Sutherland et al. 2024; Sutherland, Hodge et al. 2025; Sutherland, Hodge et al. 2026).

Investment in these services as clinical knowledge hubs would extend specialist expertise beyond tertiary settings through workforce training, education, supervision, clinical resources and consultation.

This is increasingly important as developmental support moves into community and mainstream settings. A needs-based system should make care easier to access locally without losing specialist expertise when complexity increases. Statewide knowledge hubs can provide this clinical backbone while maintaining clear pathways to specialised care.

An existing collaboration shows how this can work.

Through the Sydney Health Partners Child Development and Mental Health Clinical Academic Group (https://sydneyhealthpartners.org.au/cags/child-development-and-mental- health/), the University of Sydney, Sydney Local Health Districts and the Sydney Children’s Hospitals Network have used expert consensus to develop a core set of standardised

questions for child development and family intake, informed by strengths-based and inclusive developmental science.

This provides a consistent way to understand children’s and families’ needs when families enter care and offers a foundation that could be shared and extended to services statewide. Further co-design with diverse communities, including Aboriginal and Torres Strait Islander communities and Indigenous leadership, is essential to ensure culturally safe, appropriate and effective implementation.

2. Statewide needs-based digital and data infrastructure

The policy requirement is interoperable digital and data infrastructure that supports common assessment, navigation, routine outcome monitoring and learning across mainstream, foundational and specialist services. ACNR illustrates this capability in practice. Routinely collected data have identified service and community needs including wait times (Boulton, Hodge et al. 2023), unmet mental health needs (Boulton, Guastella et al. 2023), barriers to healthcare (Boulton, Hodge et al. 2024), and needs within diverse populations (Hodge, Sutherland et al. 2024; Boulton, Hodge et al. 2023; Boulton, Hodge et al. 2025). In partnership with communities, these data have also supported co-design of measures of child strengths (Boulton, Hankin et al. 2025), functioning (Perry, Boulton et al. 2024), and a new needs-based assessment scaled to risk of functional impairment (Boulton, Hodge et al. 2026).

ACNR has also supported rapid translation of research into policy and public discussion. Recent work applying proposed ‘Profound Autism’ criteria generated recommendations for policy and practice and substantial public engagement (Hodge, Boulton et al. 2025; Boulton, Hodge et al. 2026), while other findings have informed policy recommendations for health- system improvement (NSW Government, 2023).

Importantly, the network captures children and families whose needs may be poorly represented in administrative datasets alone, including those with intersecting developmental, mental health and medical needs and families facing socioeconomic, geographic or other barriers to care. These families are at particular risk of falling between service systems.

Supported by the Medical Research Future Fund, NEST illustrates the decision-support capability that can sit within this broader system. It is a suite of tools designed to make child development services easier to access, better coordinated and more responsive from the point at which families first seek help.

NEST combines caregiver-identified concerns, measures of strengths and functioning, clinician expertise, artificial intelligence and evidence-based decision support to identify needs earlier and guide families towards an appropriate level of support. It is designed to augment, not replace, clinical judgement by making better use of information already available to families and clinicians. Emerging models also aim to identify markers of greater functional impairment that may inform decisions about care intensity.

This infrastructure is also being used to evaluate Medicare Mental Health Kids Hubs across NSW, enabling comparisons across sites and a deeper understanding of care across communities. Investment in shared data infrastructure can therefore generate benefits across systems by improving the integration of knowledge, decision-making and care pathways

between services and departments, consistent with the family-centred approach of the National Children’s Mental Health and Wellbeing Strategy.

Such data (Boulton, Hodge et al. 2026) also support a central premise of Thriving Kids: families’ support needs frequently cut across diagnostic categories. Needs relating to communication, social development, behaviour, mental health and everyday functioning are not confined to a single diagnosis. A system organised only around diagnostic categories therefore risks overlooking concerns for which families are seeking support.

Digital infrastructure enables routine outcome monitoring and repeated assessment rather than static, infrequent measurement. When needs and outcomes are measured as part of routine care, families and clinicians can see whether support is working and adjust care as needs change. This is the basis of genuine stepped care: provide an appropriate initial intervention, measure response, and increase, modify or redirect support when required.

The purpose is not only to track outcomes, but also to support earlier identification and referral to evidence-based interventions, including parent-mediated, group-based and digital supports that families may access while waiting for other services.

The goal is to reduce delays and duplication, personalise care, and strengthen continuity between mainstream, foundational and specialist supports.

Sharing outcome information transparently with families and clinicians can strengthen accountability and shared decision-making, helping ensure that care is guided by measurable progress rather than service availability alone.

3. Embedded evaluation to determine what works, for whom, and at what intensity

Foundational supports will require substantial public investment, yet evidence remains limited about which models work best for which children and families, at what intensity and in which settings.

Many potentially valuable parenting, educational, developmental, digital and mental health interventions already exist. The priority is not simply to create more programs, but to determine which interventions work, for whom, at what intensity, and how they should be adapted for different communities.

Evaluation should therefore be funded alongside service delivery.

Australia is well positioned to embed evaluation and innovation within routine care. ACNR can identify what families need, the supports they receive and how they respond; NEST provides infrastructure for measurement-based and personalised care; and the Digi-Kids Health Hub includes digital tools to support children and families. Partnerships with the World Health Organization are also evaluating evidence-based, low-intensity group supports for families of children with autism and developmental delay.

Growing Minds Australia (GMA), Australia’s national child and youth mental health clinical trials network, adds complementary capability. It connects more than 350 researchers and clinicians to accelerate the generation, translation and implementation of evidence for

child and family mental health. Its national clinical-trials program demonstrates how trials can be embedded within service systems to expand access to promising interventions while generating real-world evidence to improve and scale care.

The University of Sydney and its partners also bring expertise in developing, evaluating and translating health and assistive technologies. Collaborations with health services, industry and community organisations have produced digital health tools, assistive technologies, remote monitoring systems and clinical decision-support platforms designed to improve access, quality and consistency of care. This capability allows evaluation of both service models and technologies that may extend workforce capacity, strengthen outcomes monitoring and improve access regardless of location.

Together, ACNR, NEST, Digi-Kids Health Hub, GMA, specialist clinical services and university-based translational programs provide complementary components of a learning health and social care system. Connecting them would allow NSW to embed pragmatic trials, implementation studies and ongoing outcomes evaluation within routine care, testing and adapting developmental, mental health, educational, parenting and technology-enabled interventions in real-world settings.

Innovation should be evaluated as part of this system, particularly as digital health, artificial intelligence, telehealth, communication and assistive technologies evolve. Promising approaches should be rigorously tested, adapted for diverse communities and translated into practice when evidence demonstrates benefit. This would give NSW an enduring capability to determine what works, for whom, in which contexts and at what cost, and to use that evidence to continuously improve Foundational Supports.

Governance, privacy, equity and human oversight

Strong governance is essential from the outset. It should include clear privacy by design; informed and accessible consent; proportionate security; transparent accountability; and meaningful representation of families, clinicians, Aboriginal and Torres Strait Islander peoples, culturally and linguistically diverse communities, people with disability, and other groups whose data and care may be affected.

Digital decision support, including artificial intelligence, should augment rather than replace professional judgement and family choice. Tools that influence access, prioritisation or intensity of support should be explainable to families and practitioners, independently evaluated for accuracy and bias across population groups, monitored after implementation, and subject to human review.

We strongly support the vision of Thriving Kids and Foundational Supports delivering earlier, needs-based and evidence-based care to Australian children and families. By building on existing clinical, research and digital infrastructure, NSW can embed service delivery, evaluation and innovation within a learning health and social care system. We welcome the opportunity for further discussion and partnership.

Sincerely

Professor Adam Guastella, Child and Youth Mental Health Chair, Clinical Psychologist Clinical Professor Natalie Silove, Paediatrician Dr Kelsie Boulton, Cognitive Psychologist Dr Talia Carl, Developmental Psychologist Associate Professor Antoinette Hodge, Clinical Neuropsychologist Associate Professor Haley M LaMonica, Clinical Neuropsychologist Professor Alistair McEwan, Cerebral Palsy Chair, Engineer Dr Rebecca Sutherland, Speech Pathologist Dr Vilas Sawrikar, Clinical Psychologist Dr Lucy Tully, Clinical Psychologist Dr Ben Wilkes, Chief Operating Officer, Brain and Mind Centre, Clinical Psychologist

The Brain and Mind Centre Child Development and Mental Health Team

University of Sydney.

References

Boulton, K. A., A. J. Guastella, M. A. Hodge, E. A. Demetriou, N. Ong and N. Silove (2023). “Mental health concerns in children with neurodevelopmental conditions attending a developmental assessment service.” J Affect Disord 335: 264-272.

Boulton, K. A., L. Hankin, A. Hodge, N. Ong, N. Silove and A. J. Guastella (2025). “Caregiver-Identified Strengths in Children attending their first neurodevelopmental assessment: Findings from the Sydney Child Development Research Registry.” Autism.

Boulton, K. A., A. Hodge, K. Levu, N. Ong, N. Silove and A. J. Guastella (2024). “Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry.” Autism Research 17(3): 555-567.

Boulton, K. A., A. Hodge, N. Ong, C. M. Middeldorp, D. Coghill, N. Silove and A. J. Guastella (2025). “Caregiver psychiatric symptoms, assessment delay, and access to supports for children with neurodevelopmental conditions.” BMC Psychiatry 25(1): 1002.

Boulton, K. A., M. A. Hodge, A. Jewell, N. Ong, N. Silove and A. J. Guastella (2023). “Diagnostic delay in children with neurodevelopmental conditions attending a publicly funded developmental assessment service: findings from the Sydney Child Neurodevelopment Research Registry.” BMJ Open 1;13(2)(2044-6055 (Electronic)): e069500.

Boulton, K. A., M. A. Hodge and R. Sutherland (2026). A new diagnosis of ‘profound autism’ is on the cards. Here’s what could change. The Conversation.

https://theconversation.com/a-new-diagnosis-of-profound-autism-is-on-the-cards-heres-what-could-change-271930.

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