Submission to the House Standing Committee on Health, Aged Care and Disability
Australian Institute of Family Studies
Content
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Executive Summary
The Australian Institute of Family Studies (AIFS), a Melbourne-based Australian Government statutory agency, was established in 1980 under the Family Law Act 1975. It is the Australian Government’s key research advisory agency in the area of family wellbeing. AIFS undertakes and publishes primary research across a broad range of issues affecting Australian families. AIFS manages some key large-scale longitudinal studies, regularly conducts policy and program evaluations, and uses knowledge translation strategies to maximise the impact of this research for policy makers and practitioners.
AIFS welcomes the opportunity to make a submission to the House of Representatives Standing Committee on Health Aged Care and Disability Inquiry into the Thriving Kids Initiative. The Department of Health, Disability and Ageing (DoHDA) describes the initiative as focusing on identifying developmental concerns earlier and establishing a national system of supports for children aged 8 and under with developmental delay and disability and low to moderate support needs and their families (DoHDA, accessed 2 October 2025). Additionally, children with permanent and significant disability will continue to be supported through the National Disability Insurance Scheme (NDIS).
This submission draws on some recent AIFS work that has relevance to the Inquiry, as well as other recent research and analysis.
It is generally accepted that the NDIS is not well-designed for children with mild to moderate support needs and AIFS broadly welcomes the announcement of Thriving Kids on the basis that:
- It is designed as part of a comprehensive system of early childhood development that provides a continuum of support for children and families including universal supports, foundational supports and, for children with permanent and significant disability, articulation with the National Disability Insurance Scheme (NDIS). As a starting point, the reform must leverage the existing community and mainstream settings in which children interact as part of their everyday lives. This should facilitate the development of a more cohesive and integrated and universal support system for all children.
- This comprehensive system means working within, and building upon, mainstream services, including maternal and child health services, GPs, childcare, kindergartens, community centres and schools, and educating and empowering parents and other family members to support children in naturalistic, everyday interactions and activities.
- This comprehensive system should be grounded in the newly released National Best Practice Framework for Early Childhood Intervention (and other relevant existing frameworks) to inform its design, since it provides clear guidance to multiple actors in the service system on how to apply best practice in support children under 9 years of age who have developmental concerns, delays, or disabilities.
- There are a range of considerations relevant to these reforms including:
- the engagement of states and territories with the Commonwealth to support a highly ambitious phased rollout from 1 July 2026
- strong alignment with the Early Childhood Education and Care reforms with a focus on disability inclusion from the outset
- how to manage entry to the NDIS ahead of broader changes to NDIS access arrangements from mid-2027
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- a strong focus on equity for children who experience compound disadvantage.
It is also acknowledged that substantial work is required to ensure that Thriving Kids is accessible, safe and effective for children with developmental delay and autism and their families, and that substantial risks will need to be mitigated (for example, the risk of service and support fragmentation, given that supports will need to cut across various complex mainstream services).
Finally, it is essential that the goal of addressing the financial sustainability of the NDIS does not inappropriately constrain the development of an optimal design for the Thriving Kids Program or unduly speed up its implementation.
A note on the use of language and terminology
It is important to recognise that children with developmental delay, autism or disability are a diverse group with equally diverse experiences and support needs (Imms et al., 2024), and that services and supports must be tailored and neuro(diversity)-affirming (Department of Social Services, 2024).
It is also important to distinguish between developmental delay and autism. Whilst an Autistic child can experience developmental delay (for example, speech delays) not all Autistic children will experience developmental delay (and vice versa), reflecting the varied support needs of children with autism and/or developmental delay (Amaze, 2025).
Another key distinction is that developmental delays may be short or long term in nature, while autism is long term in nature (Department of Social Services, 2024; Raising Children Network, 2025).
Some inquiries focused on autism (e.g., Select Committee on Autism, 2022), and research on Autistic children’s experiences of anxiety (e.g., Neilson & Bond, 2025), have identified that Autistic people can develop co-occurring anxiety as a result of repeated trauma, distress and exclusion in mainstream systems, and that this anxiety can be exacerbated by such inflexible systems (Neilson & Bond, 2023). The Select Committee on Autism found that anxiety can be ‘made worse by external factors’, such as ‘unaccommodating environments, exclusion and discrimination’ (Commonwealth of Australia, 2022, p. 6).
AIFS welcomes the new release of the National Best Practice Framework for Early Childhood Intervention by the Department of Health, Disability and Ageing, which provides much needed contemporary evidence-informed guidance for practitioners, referrers and families supporting children with delays or disabilities. The 2016 National Guidelines for Best Practice in Early Childhood Intervention were to be enacted via the NDIS however were not adequately incorporated into the design of the service delivery and funding model.
During this time, confusion and concern about the term ‘intervention’ in ‘Early Childhood Intervention’ (ECI) emerged, and led to discomfort and worry for some families (see for example, Bent et al., 2025; Reimagine Australia, 2024, 2025), including Aboriginal and Torres Strait Islander families. Subsequently, AIFS acknowledges that despite significant knowledge about best practice in the early intervention field, the discussion of issues relevant to this Inquiry have given rise to concern for some families in Autistic and disability communities in Australia.
AIFS notes that consultation and co-design with the neurodiverse, Autism and disability communities will be integral to the safe and effective implementation of the proposed initiative. This co-design process must also consider the need to allow members (or representatives) of the communities affected, sufficient time and access to engage in the process of designing and
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implementing the proposed initiative (for further information on co-design with the Autism community, see the National Autism Strategy 2025-2031. See also for example, Lerner et al., 2023).
Reforming the NDIS
At present, parents and caregivers of young children accessing the NDIS are supported to access therapies and other services through individual funding. These supports are generally delivered on a one-to-one basis outside mainstream settings.
However, it is generally accepted that the NDIS is not well-designed for children with mild to moderate support needs. The challenges associated with the existing approach to service delivery have been highlighted in the Review of Best Practice in Early Childhood Intervention – Targeted Action Plan Deliverable 4 (Review of Best Practice in ECI), with specific service system challenges highlighted including:
- a lack of early identification/support
- fragmented pathways and inconsistencies in access to services across states and territories
- workforce shortages and
- a lack of training (Imms et al., 2024).
There are also risks and negative outcomes for families who cannot access any support or the support they need, including for reason of cost or availability of relevant or appropriate expertise in their geographical location, and/or that the services are not culturally safe.
Limited consistency and coordination between key services for children with developmental delay, autism or disability and their families is a key service delivery challenge that has been identified by numerous studies and reviews (Dimmock et al., 2024; Gavidia-Payne et al., 2024; Imms et al., 2024; Russo et al., 2020).
This lack of coordination makes the service system particularly challenging to navigate for children and their families when it comes to accessing the information, referrals and services they need, but also for the workforce supporting these families (Gavidia-Payne et al., 2020, 2024).
Additionally, parents from culturally diverse backgrounds who care for children with developmental disability (Pearson & Opoku, 2024) and autism (Smith et al., 2023) have reflected on current challenges engaging with existing supports that do not align with their cultural values (Pearson & Opoku, 2024). Experiences of stigma associated with developmental delay, neurodiversity and autism have also been reported (Pearson & Opoku, 2024; Smith et al., 2023).
These experiences of stigma resonate with Aboriginal and Torres Strait Islander parents and carers (James et al., 2024), who have described distrust of existing disability services and providers, and fear of child removal if formal supports are sought or accessed (James et al., 2024). Other barriers to service use identified by Aboriginal and Torres Strait Islander families include a lack of cultural competency of disability services (James et al., 2024).
The research evidence also indicates that Aboriginal and Torres Strait Islander families caring for children with a disability value choice and flexibility. For example, some families may prefer to engage with Aboriginal and Torres Strait Islander professionals, while others may feel more
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comfortable with non-Aboriginal workers due to the close-knit nature of communities and concerns around confidentiality (James et al., 2024).
Aboriginal and Torres Strait Islander families have also reported difficulties that family members other than parents and primary carers often experience navigating disability supports for children (including the NDIS), reflecting an assumption that it is always parents navigating these systems (James et al., 2024).
Towards a comprehensive system of early childhood intervention or support
What the evidence tells us
Existing research in relation to in early childhood intervention or support suggests that children should be integrated in everyday settings (Early Childhood Intervention Australia, [now Reimagine Australia], 2016; Hanline et al., 2024; PRECI, 2024). The recent Review of Best Practice in ECI highlights the need for tiered supports for children and the integration of early childhood intervention/support services within mainstream services (Imms et al., 2024, p. 7). The Review proposes a theory of change that includes the proposition that if these Early Childhood services are part of a ‘comprehensive integrated social and services network’, children and their families are more likely to have the ‘core care conditions that they need’ (Imms et al., 2024, p. 7).
A recent meta-synthesis of qualitative studies of experiences and outcomes for children participating in inclusive early childhood programs, recommended an expansion of this service model based on the positive outcomes for children with access to, and full participation in, these programs within mainstream settings (Hanline et al., 2024).
The importance of ‘naturalistic opportunities for social interaction and inclusion’ have been highlighted in the context of this and other studies in relation to the nature and implementation of early child intervention or supports (Dimmock et al., 2024; Sandbank et al., 2024).
Working with and building upon existing services
The evidence base suggests that a comprehensive system of early childhood development that leverages mainstream settings is needed, which should result in a more integrated and universal service system. This means working within, and building upon, mainstream services, including education, health, early learning supports, as well as community centres (AIFS, confidential and unpublished, 2024; Imms et al., 2024).
PRECI have suggested the embedding of supports through integrated child and family hubs (PRECI, 2024). Whilst child and family hubs can go beyond group support settings (and may include access to tertiary supports) (PRECI, 2024), it is important to acknowledge that group environments may not work for neurodiverse and Autistic children who experience anxiety, or where these groups are not accessible, culturally appropriate or that do not allow for the building of trust and rapport (Bright Pine Behavioural Health, 2025; Ensor et al., 2023; Hernandez et al., 2023; Morris et al., 2024; Smith et al., 2020).
In addition to supporting the capacity of parents and families, the comprehensive system of early childhood development should include:
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- the active engagement of states and territories and the Commonwealth (PRECI, 2024)
- Ideally, all levels of government would communicate, collaborate and be transparent about their respective responsibilities and processes, to avoid duplication and ensure children, their families and caregivers avoid any gaps.
- For example, the Commonwealth government may provide overarching and standardised processes, practice guidelines, resources, principles and terminology, and funding arrangements. State and territory governments may assist children and families to navigate the specific services they may need in their jurisdiction. Local governments may link children in with a range of suitable supports within their communities through community access points (taking a ‘no wrong door’ approach)
- To ensure that families are adequately supported and that there are no service gaps, state, territory and federal governments must establish clear agreement regarding responsibility for funding and implementation of supports. There should also be a clear plan agreed by the Commonwealth and the jurisdictions for what support looks like for children and their families. Key considerations should include: what children and families can expect from mainstream services, how coordination between mainstream and other key services and supports will work, how families will be supported when children have complex needs, and how changing or shifting needs will be supported.
- Ideally, all levels of government would communicate, collaborate and be transparent about their respective responsibilities and processes, to avoid duplication and ensure children, their families and caregivers avoid any gaps.
- strong alignment with the Early Childhood Education and Care (ECEC) reforms with the ECEC designed with needs of children with developmental delay, neurodiversity and autism in mind. These reforms are aimed at supporting improved accessibility and affordability of early childhood education and care, including through the provision of universal access to 30 hours per week of pre-school for 3 and 4 year old children and 50 hours of free ECEC for every child (Australian Parliamentary Budget Office, 2025). The reforms require workforce development and addressing geographical access challenges and will require the design and delivery of ECEC that supports the needs of children with developmental delay, neurodiversity and autism.
- an acknowledgement that autism is lifelong and needs can vary over time, such that consideration needs to be given to how children will transition from this form of foundational support to future supports once they are over the age of 8 and the types of supports these children and families will be able to access.
- regard for how to interact with the entry to the NDIS, especially for children who may be on the boundary of eligibility, noting that even with stronger foundational supports, children are often still likely to need individual therapies to ensure tailored support that meets their therapeutic needs.
- a strong focus on children who are experiencing developmental delay, with consideration for accessibility requirements for children and their families in regional, rural and remote locations and from Aboriginal and Torres Strait Islander and Culturally and Linguistically Diverse children and their families (PRECI, 2024). The 2024 Australian Early Development Census (AEDC) shows that 7.5% of children in the AEDC are Aboriginal and Torres Strait Islander children and that a quarter of children lived in regional areas (25.1%) and 2.2% lived in remote or very remote areas. AEDC data on these groups will support Commonwealth, state and territory governments to make more informed decisions is relation to children in these communities (AEDC, 2024).
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Supporting professional and family capacity, and family-led approaches
Research has identified that professionals working with children and their families require specialist knowledge and skills that support them to work with children with autism, developmental delay and disabilities over a period of developmental change and having regard to the effect of ‘dynamic and evolving social and cultural contexts’ (Gavidia-Payne, 2024; PRECI, 2024; Stayton et al., 2023, p. 196).
It is important for professionals to work in partnership with families to identify ‘functional goals and outcomes’ while also designing and implementing supports for the various age ranges in ‘natural and inclusive environments’ and to ‘integrate knowledge of the child and family’s context’ (Adams et al., 2024; Gavidia-Payne, 2024; Stayton et al., 2023 citing Barton & Smith, 2015; Simpson et al., 2023, p 196). This context ‘includes factors such as age, where they live, socio-economic status, income, education, culture and ethnicity, gender, sexuality, support needs, life experiences, communication needs and the extent of a person’s support networks’ (Department of Social Services, 2024, p. 22).
The centrality of family members has also been reflected in the emphasis placed on the development of collaborative relationships between parents and professionals (van Noorden et al., 2025; Gibbs et al., 2019 citing Heerman, Wilson, & Wilhelm, 2005 and Smith, SteelFisher, Salhi, & Shen, 2012) and in the ‘ongoing development of care models that place parents as central to their infant’s caregiving’ (Gibbs et al., 2019, p.266, citing O’Brien et al., 2013).
Parents and family can play an important, indeed integral role in supporting the diverse needs of their children in partnership with professionals who have relevant expertise and experience working with children with developmental delay, and/or autism, and who take neuro(diversity)-affirming approaches1 (Cook et al., 2017; Druker et al., 2020; Larsen et al., 2020; Leadbitter et al., 2020; Simpson et al., 2023).
For example, a recent mixed-methods study codesigned with Autistic researchers suggests that parenting supports may be helpful for parents and their children when they are provided ‘early’ or ‘very-early’ (within the first two years of life) (Bent et al., 2025). Parents and carers in this study ‘generally endorsed the terms “support” (vs “intervention”) and “early in life” (vs “at-risk/pre-emptive”)’ (Bent et al., 2025, p. 2282).
The more negative phrasings have the potential to do harm by positioning particular behaviours as ‘problems’ to be ‘fixed’ highlighting the importance of accurate and respectful language (Amaze, 2025; Bent et al., 2025). Notably, participants also indicated that early supports ‘should not aim to supress autistic behaviour’ (e.g., through seeking to reduce self-soothing strategies like stimming, or encouraging the use of eye contact) (Bent et al., 2025, p. 2286) and that supports ‘should focus on making the best social/emotional/sensory/physical/environment possible in which that child can thrive’ (Bent et al., 2025, p. 2289).
It is important to note, however, that these considerations do not discount the need for individualised family and child-led supports (Bent et al., 2025).
The available research also highlights the need for relevant information for parents/carers to be accessible and flexible and that approaches involve support in home settings that is focused on children’s individual needs, including time-intensive individualised supports to provide a range of strategies specific to the individual child, as well as the provision of supports in group and
1 This concept of neuro(diversity)-affirming practices is relatively new, with neuro(diversity)-affirming care training either not mandatory or only recently becoming mandatory in some fields (Australian Psychological Society, 2025).
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community settings (Cleary et al., 2022; Leadbitter et al., 2020;Tanner & Dounavi, 2020; van Noorden et al., 2025).
Conclusion
AIFS recognises the need for a comprehensive system of early childhood development to support children and families that incorporates these dependencies and that is developed in consultation with the families of children with developmental delay, neurodiversity and autism.
The effective implementation of Thriving Kids requires a comprehensive and effective system of early childhood intervention or support. This comprises sufficient investment, resourcing, and coordination from state, territory and federal governments.
It also requires governments at all levels to work collaboratively to address complex challenges across multiple service systems. These include:
- addressing workforce shortages and building workforce capacity (with a specific focus on building capacity in relation to supporting families and children with autism, disability and/or developmental delay)
- service fragmentation (and an assessment of the risk of exacerbating fragmentation in the implementation of the Thriving Kids initiative), and
- inequitable access to supports (including for Aboriginal and Torres Strait Islander families, Culturally and Linguistically diverse communities, and those living in regional, rural or remote areas).
Such system collaboration must be based on clear agreement regarding:
- responsibility for funding and implementation of supports including building the capability and capacity of foundational supports (including appropriate training, resourcing, etc.)
- what support looks like from the perspective of children and families, ensuring that families are provided with clear information on the scope of mainstream services, and how these services will intersect with other key supports. Families must also have clarity on how changing support needs will be accommodated, how referrals to other services will work in practice, and how children over the age of 8 will be supported.
Any reform should be designed in genuine partnership with the neurodivergent, Autism and disability communities, which will require sufficient investment and time to establish a safe and effective co-design process. This approach will ensure any reform is neuro(diversity)-affirming, child-led, inclusive, responsive to lived experience, and based on existing evidence.
Evidence highlights the diverse experiences and support needs of children with developmental delay, autism or disability (Imms et al., 2024), indicating that supports must be individually tailored to meet these needs (Department of Social Services, 2024). Crucially, access to new Medicare allied health items for services like Occupational Therapy and Speech Pathology will be needed by many children and their families. These individualised therapeutic supports should be embedded within the broader system to ensure that every child’s unique needs are met.
As indicated earlier, taking a comprehensive approach to early childhood development also involves supporting parents and other family members to in turn support their children in naturalistic, everyday interactions and activities, noting that the family setting is important in its
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own right. Facilitating access to support via a ‘no wrong door’ approach would also support family engagement in ECI (PRECI, 2024).
Reforms must be consistent with Australia’s obligations under international human rights frameworks such as the UN Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities. This approach must also be closely aligned with ongoing reforms in ECEC, NDIS, and foundational supports, along with relevant, evidence-based frameworks, including the National Best Practice Framework for Early Childhood Intervention (2025), the National Framework for assessing children’s functional strengths and support needs in Australia (2024) and the National Guidelines for Supporting the Learning, Participation and Wellbeing of Autistic Children and their Families in Australia (2022), together with the Early Years Learning Framework.
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Appendix 1: A brief overview of AIFS work
As outlined in the introduction, AIFS has conducted work and research of relevance to the Inquiry.
The Longitudinal Study of Australian Children (LSAC)
The Longitudinal Study of Australian Children (LSAC) which commenced in 2004 is a major study following the development of 10,000 children and families from all parts of Australia. Managed by AIFS on behalf of the Department of Social Services (DSS), LSAC has been used extensively in respect of children experiencing behavioural and affective issues and developmental delays.
For example:
A new LSAC birth cohort could inform assessment of outcomes for children being engaged through the Thriving Kids program.
Resources on supporting neurodivergent children and young people
These resources are published through our Child Family Community Australia (CFCA) information exchange.
For example:
Supporting sensory processing for neurodivergent children | Australian Institute of Family Studies
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Tanner, A., & Dounavi, K. (2020). Maximizing the potential for infants at-risk for autism spectrum disorder through a parent-mediated verbal behavior intervention. European Journal of Behavior Analysis, 21(2), 271-291.
van Noorden, L. E., Sigafoos, J., Wallace-Watkin, C., & Waddington, H. L. (2025). Parent Perceptions of Participating in a Parent-Mediated Program for Young Autistic Children. Journal of Early Intervention, 47(1), 84-106.
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