Submission 76 — Academy of Child and Adolescent Health — Inquiry into the Thriving Kids initiative | External submission

27.09.2025

Dr Mike Freelander Chair, House Standing Committee on Health, Aged Care and Disability.

Re Inquiry into Thriving Kids Initiative.

Dear Dr Freelander,

The Academy of Child and Adolescent Health (ACAH) is very pleased to submit this response to the Inquiry into Thriving Kids.

The ACAH promotes the health and wellbeing of every newborn, child and young person in order that they may reach their maximum potential. It was established in 2016, and our membership includes trainees, paediatricians, allied health and nursing professionals.

The ACAH applauds the Australian Health Minister Mark Butler’s announcement of Thriving Kids and the visionary appointment of Frank Oberklaid AM as Co-Chair, a foundation ACAH Board member. Thriving Kids presents an opportunity to refocus on the needs of children with, or at risk of, developmental delays or disabilities and their families to ensure they receive the right support at the right time, in the right place and in the right way.

The ACAH recognises that children with moderate to severe developmental disabilities typically require additional and ongoing support to engage in ordinary day to day family, community and educational activities. Thriving Kids enables a systemic response to address the high NDIS administrative burden often experienced by parents that have, in some cases, created enormous stress and further barriers to accessing support that compounds poorer outcomes.

The ACAH strongly supports a review of the provision of early intervention for children with, or at risk of, developmental disabilities to ensure that it is aligned with the following principles:

Family centred- Parents are the primary and most powerful influence in their child’s life. Other family members such as siblings and grandparent are also critical with an enduring influence for children. It’s important that children, especially during early childhood, receive responsive care, protection, adequate nutrition and opportunities for learning to support their healthy development and future potential (WHO Nurturing Care for Early Childhood Development).
Equity Parents must be supported by equitable health, early childhood education and social services sectors that are responsive to their child’s needs. This must be proportionate to the child and family’s needs.

Intervention commences early to capitalise on the brain plasticity and rapid neural development of young children and to enable secondary and tertiary prevention to provide for better outcomes.
Integrated models of service delivery where various health, early childhood education and social care providers collaborate. This ensures seamless patient-centred care that responds to wholistic needs of the person eg health navigators, hubs.
Mainstream uplift especially primary care and maternal/child health services There is increased engagement of primary health care practitioners working in innovative ways with paediatrics, child health services and early childhood education/schools.
Localised solutions that build on existing services and resources and responds to community needs.
Enhanced role for health services involving developmental screening/surveillance, well-child care that supports healthy families and addresses potential factors that may impact child development such as screen time. It also ought to involve paediatric and child health services including diagnostic services, intervention recommendations, provision of intervention or brokerage for appropriate children/families and establishment of active collaborative partnerships at individual family and child level and through intersectoral governance oversight.
Paediatricians, child health professionals and primary care practitioners, allied health, nursing and other key health organisations or frameworks, such as developmental screening, are explicitly recognised and valued for their expertise, commitment to and relevance for children with or at risk of developmental delays and actively involved in referrals to Thriving Kids and working with allied health teams to reduce miscommunication.
First Nations peoples are involved in leading, planning and delivering services for their communities. Further, First Nation knowledge and ways of working may be valuable for Thriving Kids as a whole. Their key contributions and leadership are acknowledged.
Cumbersome administrative aspects of the current National Disability Insurance Scheme (NDIS) are minimised to reduce the added demands, resources, stress and inequitable outcomes that it has introduced for parents and carers (referred to as parents through this document).
Evidence based- interventions for which there is evidence of impact for the child and family feature in Thriving Kids including delivery and dose response.
Sustainable funding for Thriving Kids provides value for money for the child, family and community.
Children with moderate to severe disabilities (determined by functional impairments) receive the support they and their parents need for them to participate in healthcare, schools, early intervention and communities.
Strengths based approach to disability increasingly features in Thriving Kids.
Thriving Kids builds on convergent existing frameworks and initiatives such as National Children’s Mental Health and Wellbeing Strategy, National Roadmap for Improving the Health of people with Intellectual Disabilities, Building Early Education

Fund, Investment Dialogue for Australian Children, Australian Early Years Strategy 2024-2034.

The ACAH is pleased to provide some selected research and international practice that is relevant to our submission- see attachment. This will inform the critical opportunity that Thriving Kids presents to realign early childhood intervention in Australia to the needs of families and children with or at risk of developmental delays or disabilities. Detailed references can be provided on request.

I particularly wish to acknowledge Professor Sue Woolfenden, ACAH member, for her valuable contributions to this submission. This submission has been endorsed by Australian Association Developmental Disability Medicine (AADDM).

The ACAH would be pleased to meet with you to discuss this submission and other related issues. The ACAH can be contacted on redacted and I can be directly contacted on redacted. Please don’t hesitate to contact us if we can assist your enquiry any further.

Warm regards

Dr Jacqueline Small MBBS MPH(hons) GAICD FRCP FRCPI FRCPCH (hons) FRACP Community Paediatrician and Chair, ACAH Board

And

redacted Dr Alexis Berry BSc(Hons) MMBS FAFRM Staff Specialist Rehabilitation Medicine and President AADDM E: aaddmsecretariat@gmail.com WWW: aaddm.com.au

Attachment

There is an increasing prevalence of children with developmental, behavioural and emotional concerns.

There is growing evidence demonstrating that there are increasing numbers of children with developmental, behavioural and emotional concerns. This trend escalated after COVID pandemic and associated consequences such as lockdowns and closure of schools.

The NDIS, as a scheme established to support people with disability, is not well suited for this wider group of children. There is also rising complexity of children with moderate/severe disability whose needs are often not well met by the NDIS.

The Australian Early Development Index (AEDI) is a nationwide data collection of early childhood development. The 2024 report reveals that more children are not on track compared to previous reports with 12.5% of children vulnerable in 2 or more domains, 23.5% vulnerable in 1 or more domains, and only 52.9% on track across all 5 developmental domains.

In 2022, 5.7% of children aged 0-4 years of age had a disability, increased from 3.7% in 2018 (https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release).

Children with disabilities experience higher rates of health problems. In 2022, 52.4% of children aged 0-14 years had one long term health condition (https://www.abs.gov.au/articles/children-and-young-people-disability-2022).

Children with disabilities experience higher and increasing rates of bullying and exclusion from school. In 2024, 75% of children with disabilities were bullied and 72% were excluded from school activities or events (https://cyda.org.au/three-in-four-disabled-students-are-bullied-or-excluded-at-school-and-its-getting-worse-new-survey-reveals/).

Students with disability are more likely to be suspended or expelled from school further contributing to learning loss and experiences of exclusion (https://www.abc.net.au/news/2024-09-23/school-suspensions-economic-cost-children-with-disability/104327080).

International experience highlights the extraordinarily high rates of young children as young as 3 years of age being expelled from preschool. A study from California demonstrated that 16% of children with autism had been expelled from preschool (https://www.universityofcalifornia.edu/news/one-every-six-autistic-children-are-expelled-daycare).

Mental health problems are higher in adolescents with autism and intellectual disability with 30-40% or more of adolescents with intellectual disability (Einfeld and Tonge and https://pmc.ncbi.nlm.nih.gov/articles/PMC9805925/). This highlights the need to better understand how to prevent or reduce this health disparity earlier in the young person’s life.

COVID pandemic has been recognised as having a major adverse impact on emotional wellbeing and development of children and their parents. Anecdotal reports from NSW special school staff highlight the ongoing detrimental impact of COVID for children with more severe disabilities whose behaviour is more disruptive and who are less engaged with learning activities.

International data demonstrates higher rates of emotional and behaviour problems in preschool aged children post pandemic, with pooled prevalence rates of 24.3% (https://pmc.ncbi.nlm.nih.gov/articles/PMC11251369/).

Thriving Kids provides an opportunity to better meet the needs of this increasing cohort of children and realign intervention with evidence based principles that may serve to improve future outcomes.

Equity

Many families live under such oppressive circumstances that they are neither willing nor able to participate in the activities required by a parent intervention program…Inadequate health care, poor housing, lack of education, low income and the necessity for full time work..rob parents of the energy to spend time with their children (Bronfenbrenner, 1975).

Child and family health (CFH) services have a fundamental role in the provision of universal developmental and health surveillance with timely early identification of difficulties and access to early intervention.1 https://pubmed.ncbi.nlm.nih.gov/23551940/

Woolfenden et al 2015 demonstrated that families experiencing disadvantages and their children have reduced access to developmental checks, early intervention, and psychosocial supports from CFH services due to financial, language, and cultural barriers. https://bmjopen.bmj.com/content/6/9/e012144, https://pubmed.ncbi.nlm.nih.gov/25510182/,

They showed that children from CALD backgrounds have a 1.5 to 2.0 times increased risk of developmental vulnerability as early as 6 months of age compared to the general population, and those at the greatest developmental risk are the least likely to be identified by Australia’s universal developmental surveillance programs.

This is compounded by unclear referral pathways and service delivery gaps across the early childhood education, social, and health systems.

We have a CFH service system that is siloed and fragmented, where there is an inverse care law - those CALD at greater developmental risk are less likely to access CFH services and have their needs identified and addressed early.

Intervention commences early

It has been shown that **only 30.7% of CALD families access routine CFH nursing well-child checks at 6 months of age, declining to 10% by 12 months.**19 This can result in late intervention and catastrophic impacts for the child, their family.20 Late intervention costs Australia $15.2 billion annually due to lost productivity.20

Integrated solutions The solution: The recent Productivity Commission Report21, NSW Brighter Beginnings initiative22, National Action Plan for the Health of Children and Young People: 2020-203023, and National Framework for Universal Child and Family Health Services24 all recognised the need to enhance CFH service delivery for priority populations.

Hubs are a holistic, place-based intervention located in a physical building with: co-located and more importantly integrated, inter-agency services; soft entry; shared referral pathways; service navigation; and capacity building for families (Figure 1). 25

In Hubs, CFH services are co-located and integrated with non-government organisations (NGOs), health, and social care services. Families are linked with services, including financial counselling, GPs, playgroups, domestic violence support, mental health support, early childhood education, and welfare. Navigation support provides the caregiver, child, and family active linkage between maternity and CFH services, as well as linkage across health and social services.

Researchers have synthesised the evidence for, piloted, and trialled innovative Hubs that address disparities among CALD primary care, infants, and their families who access CFH services.26,27 Their research has shown that Hubs can simplify pathways between maternity-, CFH-, and social care- services for primary carers and children from CALD communities.25,28

This has promoted equity and simplified access to holistic wraparound services.25,29,30 They have demonstrated that Hubs are acceptable to CALD families 25,29,31 CALD caregivers reported: positive relationships with CFH nursing through continuity of care; beneficial interactions with Hub staff; respect for cultural safety and diversity; use of interpreters; and they would recommend the Hub to other CALD mothers.31

This acceptability translates into improved engagement. Compared to routine CFH services, CALD caregivers and their children attending Hubs have significantly higher rates of CFH nurse well-child check completion at 6 months (1.92x more likely) and 12 months (4.68x more likely) (Figure 2), and receive more comprehensive surveillance assessments.19

International practice, research and strategies

Serve and Return Interactions

The early childhood years present unrivalled opportunities to intervene to support healthy child and brain development that can have long term benefits.

Serve and return/responsive interactions with caregiver play a key role in shaping brain architecture
These form a critical part of a child’s social environment and are crucial for early development.
They support development of early language and social skills that serve as foundation for more complex, higher level cognitive abilities that form later in life (Harvard Centre for Developing Child).

Family Centred Practice

There is evidence that family centred early intervention practices can result in improved outcomes.

The following concepts and research were presented by Prof Carl Dunst, Developmental Psychologist and Senior Research Scientist at Orelana Hawks Puckett Institute North Carolina USA, at the International Society for Early Intervention Conference held 2-5 September 2025 in Lisbon Portugal.

A microsystem is the complex relationship between a developing person and the (social and nonsocial) environment in an immediate setting containing that person (Bronfenbrenner, 1977).

The personal characteristics likely to be most potent in affecting the course…of (child) development (include) those that set in motion, sustain and encourage…interaction between the (developing child) and aspects of the proximal environment: first, the people present in the settings; and second, the..features of the setting that invite, permit, or inhibit engagement in sustained and more complex interaction with an activity in the immediate environment (Bronfenbrenner, 1993).

The optimal conditions for (child) learning and development…are facilitated by the participation of a developing person in progressively more complex patterns of reciprocal (microsystem) activity with whom that person has developed a strong and enduring emotional attachment (eg parent) where the balance of power gradually shifts in favour of the developing person (Bronfenbrenner, 1979).

Dunst investigated the shift in balance of power between mothers and their infants and toddlers with Down Syndrome and mothers of typically developing infants and toddlers between 8-10 months of age and 16-18 months of age. Findings showed a shift in balance of power for the children who were typically developing but not for the children with Down Syndrome.

The failure to find a shift in balance of power for the children with Down Syndrome was due to a large degree to the intervention practices the mothers were taught to use by early childhood intervention practitioners. In debriefing sessions following the observation of each mother and child, the mother’s explanation was framed in terms of how they were instructed to ellicit behaviour from their children.

The term family centred refers to a combination of beliefs and practices that define particular ways of working with families that are consumer driven and competency enhancing. Family support and resource programs are efforts directed at reforming existing policies and practices in ways that enable and empower people by enhancing and promoting individual and family capabilities that support and strengthen family functioning.

While there are different models that consider the family as the unit of intervention, the family centred model is consumer driven and the family’s needs and desires determine all aspects of service delivery. Professionals work in ways that promote family decision making, capabilities and competencies. Intervention practices are almost entirely strength and competency base, and the resources and supports aim primarily to strengthen a family’s capacity to build both informal and formal networks of resources (Dunst 1991).

Recent meta-analyses demonstrate that

o Unmet family need are negatively related to parenting self efficacy beliefs (confidence and competence) and parenting engagement and involvement practices.

o Adequacy of family resources are positively related to parenting self efficacy beliefs (confidence and competence) and parenting engagement and involvement practices (Dunst 2023, 2025).

Dunst reflected in 2025 that

o Family and family member strengths operationalised as abilities. Skills, preferences, interests etc focus on behaviour associated with positive child, parent and family functioning. o Using family member strengths as building blocks for strengthening existing and promoting the acquisition of new competencies is a much more productive approach than only correcting real or implied weaknesses.

Guralnick in 2010 described a framework for programme development designed to support children’s peer related social competency (https://pmc.ncbi.nlm.nih.gov/articles/PMC2880512/). He called out a major challenge at that time, that arguably remains relevant in Australia, was to coordinate and integrate aspects of early intervention.

In 2020, Guralnick wrote about a developmentally oriented framework supports a comprehensive family centred model (https://pubmed.ncbi.nlm.nih.gov/32612322/).

There are also calls within Australia for a more relationship based approach to early intervention for children (https://healthy-trajectories.com.au/wp-content/uploads/2023/01/6.-Best-Practices-in-Early-Childhood-Intervention_A-Position-Paper-.pdf).

Healthy relationships are also foundational for children with or at risk developmental disabilities or delays.

The first 2000 days of a child’s life are fundamental for optimal human capability.9

Young children’s growth and development depend on the positive emotional connection that babies, toddlers and their parents and caregivers experience with each other. These early positive relationships also support parents’ overall wellbeing by giving them joy, comfort and meaning (https://nurtureconnection.org/early-relational-health/).

David Willis, Professor of Paediatrics Georgetown University (https://gufaculty360.georgetown.edu/s/contact/003UH00000H4ALjYAN/david-w-willis) notes the importance of elevating healthy relationships within early childhood intervention.

The Thrive Centre for Children, Families and Communities, Georgetown University, Washington USA, mission is to advance equitable systems of care and support that enable children, families and communities to thrive (https://thrivecenter.georgetown.edu/about/).

Portuguese System of Early Childhood Intervention (SNIPI)

The Ministers with responsibility for SNIPI are Ministries for Health, Education and Social Services. Key contact for the Thriving Kids Inquiry is paediatrician Dr Jose Fernando (redacted). Dr Fernando is a neurodevelopmental pediatrician and member of the National Coordinating Committee of SNIPI (National Portuguese system of ECI) in representation of the Ministry of Health. He has provided consent to forward the attachment that describes elements of the SNIPI initiative.

The SNIPI project in Portugal features the following approaches: (https://healthforecd.com/Portuguese-Experience-Introducing-Early-Childhood-Intervention):

Transdisciplinary individualised comprehensive services for children and families using formal and informal resources and creates collaborative effort involving health, education and social services within a localised district.
Training and monitoring provided to all teams - this has been manualised and translated to other languages including English.
Core set of professionals included primary care physicians and nurses, special educators from public school system, social workers, psychologist, therapists.
Clearly articulated governance with coordinating team at district level and intermediary supervising team to support professionals.
Family as the target for planning and delivering support
Services provided in community environments involving everyday activities.
Formal transition to school plan.

Eligibility

Eligibility to SNIPI is for children with or at risk of developmental problems and aged 0-6 years.

With developmental problems - one or more areas of development confirmed with formal professional assessment and specific health conditions associated with developmental problems.
At risk developmental problems - biological and environmental risk factors

Role of the health system

Primary health care conducts screening, detection delays/risk factors, makes referral to Early Childhood Intervention (ECI) and hosts ECI team. Also refers to child development centres.
Child development centres - paediatricians, therapists, special educators for specialised evaluation, intervention and follow up.

MENCAP Northern Island

Mencap provides support to people with a learning disability during the early years, youth and adult life. Their vision is for Northern Ireland to be the best place in the world for people with a learning disability to live happy and healthy lives.

One of their programmes is Mencap Children’s Centre. Key features include:

Centre based service for children 2-3 years with significant developmental delay and support for transition to nursery school.
Partnership with Belfast Health and Social Care Trust team of allied health professionals
Key worker model and trained staff
Active support for parents and participation in a parent training programme run alongside their child’s attendance at the centre.
Paediatric clinics held onsite
Sustained connections within the parents and families during and after their child’s attendance at the centre.

Accessing the NDIS is associated with onerous administrative burden for parents.

Persistent, constant demands for care and support can be exhausting for carers, who are sometimes referred to as perpetual parents (Grant et al, 2003). The multiple demands that parents are faced with, such as financial security and their own health issues, intersect with the increasingly onerous demands of accessing and managing the NDIS-each step along the way.

Parents of children often express their distress, stress and frustration of accessing the NDIS. One parent asked her social worker and paediatrician to tell them (NDIS) that she was desperate.

Researchers are revealing that there is growing evidence that personalisation schemes, such as the NDIS, may be entrenching administrative burden, due to their unprecedented emphasis on individual skills and advocacy. They have found that the NDIS is administratively cumbersome overall, and this is exacerbated for particular social groups (Carey et al 2021).

Their systematic review and other research demonstrate that the NDIS is: time consuming, inefficient and demoralising, administration isn’t enabling, deficit approach, people unaware of services, lacks indigenous cultural sensitivity, navigates bureaucracy and obstructions every step of the planning process, they need to build partnerships with workers and agencies, substantial impact on the family among other issues.