NDIA Accountability Project

Submission 106 — National Organisation for Fetal Alcohol Spectrum Disorders — Inquiry into the Thriving Kids initiative

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Submission to the House of Representatives Standing Committee on Health, Aged Care and Disability:

NOFASD Australia Ltd.

National Organisation for Fetal Alcohol Spectrum Disorders Australia Inc

Phone: 1800 860 613 | email: admin@nofasd.org.au | www.nofasd.org.au | ABN: 93 833 563 942

Patron: Dame Quentin Bryce

1. EXECUTIVE SUMMARY

NOFASD Australia, the national peak body for families and individuals living with Fetal Alcohol Spectrum Disorder (FASD), welcomes the opportunity to contribute to this Inquiry. Thriving Kids is a critical reform that will shape the availability of foundational supports outside the NDIS for children under the age of 9, with developmental concerns. However, in its current form it risks repeating systemic failures, particularly for children with FASD, unless targeted investment and consultation are embedded from the outset.

Fetal Alcohol Spectrum Disorder (FASD) is a lifelong, brain-based neurodevelopmental disability caused by prenatal alcohol exposure (PAE). Despite being the leading cause of preventable non-genetic developmental disability in Australia, FASD remains under-identified, underdiagnosed, and poorly understood in mainstream service systems. The rapid timeline proposed for the rollout of Thriving Kids does not allow adequate time to build the workforce and service capacity required to meet children’s needs, especially given the severe shortage of FASD-informed clinicians and supports. Existing health, education, and allied health services are already under strain, and assumptions that they can simply expand to accommodate new demand are unrealistic. Without targeted investment and planning, Thriving Kids risks repeating systemic failures that have long left children with FASD without appropriate support.

If Thriving Kids is designed as a broad developmental support initiative, it will not be equipped to meet the nuanced needs of children with FASD. FASD demands specialist and informed care and support, not broad-based programming. It is critical to emphasise that FASD does not align with the ‘mild to moderate needs’ categorisation proposed for Thriving Kids. Children with FASD frequently experience significant, lifelong impairments across cognitive, behavioural, and functional domains. Positioning FASD alongside mild developmental delay or autism risks minimising its severity and obscuring the need for specialist, multidisciplinary supports. Without this recognition, children with FASD risk being misdiagnosed,

unsupported, and funnelled into education, health, and justice systems ill-equipped to meet their needs. While the reform states that it will “carefully consider” the needs of children and families, the process to date has been rushed and has not included meaningful consultation with parents, carers, or people with lived experience of developmental disability.

2. ABOUT NOFASD AUSTRALIA

NOFASD Australia is the national organisation representing individuals, families, carers, and professionals affected by Fetal Alcohol Spectrum Disorder. We provide a free, confidential helpline, national advocacy, training, and resources. Our work is informed by lived experience, professional partnerships, and a commitment to improving outcomes across education, disability, health, justice, and child protection systems.

3. THE SCALE AND IMPACT OF FASD

Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe the brain- and body-based impacts caused by prenatal alcohol exposure (PAE). It is a lifelong, non-genetic neurodevelopmental disability that affects learning, memory, attention, communication, emotional regulation, and behaviour. Individuals with FASD often require support across all areas of daily life. Each individual is unique and may have areas of both strength and significant difficulty.

The severity of FASD-related impairments varies widely and is influenced by multiple factors, including the amount and timing of alcohol use during pregnancy, maternal health (including nutrition, stress, and mental health), and broader environmental conditions. FASD is the leading cause of preventable non-genetic developmental disability in Australia.

A landmark 2025 national prevalence study by Tsang et al. found that 1 in 28 Australians may be affected by FASD, equivalent to one child in every classroom. This rate is based on national-level modelling, reflecting a 3.64% prevalence rate (Tsang et al., 2025).

Children with FASD face elevated risks of disrupted schooling, mental health concerns, involvement with out-of-home care, and later contact with the justice

system (Elliott et al., 2025). These risks are intensified by frequent comorbidity (e.g., ADHD, autism) and exposure to trauma (Elliott et al., 2025; Lange et al., 2017).

FASD also disproportionately affects Aboriginal and Torres Strait Islander children, yet culturally safe prevention, diagnostic, and support pathways remain limited (Australian FASD Guidelines Development Group, 2025). Shame, stigma, and mistrust of government systems can further hinder disclosure of prenatal alcohol exposure and delay access to assessment and support.

Despite the scale of need, FASD is rarely recognised within universal entry points, maternal and child health, general practice and primary care, allied health, early childhood education and care, and schools. Families commonly report stigma, blame, and repeated dismissal of concerns, leading to misidentification as “behavioural” issues instead of disability-informed responses. Thriving Kids is an opportunity to address this gap by embedding FASD-informed resources, culturally safe pathways, and workforce capability across mainstream services.

4. RESPONSE TO TERMS OF REFERENCE

4.1 Evidence-based information and resources for parents and caregivers

Parents and carers affected by FASD consistently report difficulties in finding reliable, accessible information at the earliest points of concern. While caregivers often notice developmental differences, their observations are frequently dismissed or attributed to behavioural issues (NOFASD, 2025).

The 2025 Australian Guidelines for the Diagnosis of FASD emphasise that inadequate documentation of prenatal alcohol exposure is a persistent barrier to diagnosis, underscoring the importance of family-friendly resources and clear referral pathways (Australian FASD Guidelines Development Group, 2025).

Screening protocols should also flag children at higher risk of FASD, including those with known prenatal alcohol or drug exposure and children in out-of-home care. Identifying these children early is essential to avoid misdiagnosis and to ensure timely referral to appropriate supports.

Given the national prevalence of FASD (1 in 28 Australians; Tsang et al., 2025), universal entry points such as maternal and child health checks, GP consultations, and early childhood education must embed plain-language resources to guide

parents. Campaigns such as Every Moment Matters demonstrate the effectiveness of evidence-based, co-designed messaging for families and communities (FARE et al., 2021). Similarly, the Strong Born campaign, led by NACCHO in partnership with Aboriginal Community Controlled Health Organisations, shows the importance of strengths-based, culturally secure, co-designed health promotion messaging for health workers. By centring community voices and reducing stigma, Strong Born demonstrates how national initiatives can both prevent FASD and support families already living with it (Williams et al., 2024).

Recommendation: Thriving Kids should co-develop FASD resources in partnership with families and lived experience experts and embed them in all universal child health and education platforms so that parents receive consistent, evidence-based guidance. In addition, Thriving Kids should implement screening protocols for high-risk groups, including children with known prenatal alcohol exposure and those in out-of-home care, to ensure early identification and timely referral to appropriate supports.

4.2 Effectiveness of current and previous programs

International and Australian evidence shows that programs only succeed when the workforce is FASD-literate. Where FASD is not recognised, children are frequently misdiagnosed with behavioural disorders, resulting in punitive responses rather than therapeutic interventions (Australian FASD Guidelines Development Group, 2025; NOFASD, 2025). The needs of children with FASD extend well beyond what can be addressed through broad developmental support. Labelling these children as having ‘mild to moderate’ needs risks funnelling them into generic programs that are ill-equipped to respond to the lifelong impacts of prenatal alcohol exposure. Without tailored pathways, Thriving Kids may inadvertently under-serve this group and miss the opportunity for cost-effective early intervention.

Claims that families can access allied health supports through the Medicare Benefits Schedule (MBS) mask significant limitations. For complex neurodevelopmental disorders, including FASD, only a consultant paediatrician (item 135/92140) or psychiatrist (item 289/92434) can develop a treatment and management plan, which is claimable only once per patient’s lifetime. This plan permits referral to up to eight allied health assessment sessions and 20 treatment sessions across a lifetime, with

a maximum of 10 services per course of treatment and strict reporting and review requirements (Australian Government Department of Health and Aged Care, 2025; Services Australia, 2025). For children with FASD, who often require sustained, multidisciplinary intervention, these restrictions highlight the inadequacy of relying on the MBS alone to deliver effective foundational supports. Thriving Kids must go beyond MBS and ensure sustainable, condition-specific pathways for children with FASD.

At the same time, emerging evidence shows that trauma-informed approaches in early childhood education and care (ECEC) settings can strengthen teacher knowledge and classroom practice, though the field is still developing, with limited long-term evidence and gaps in system-wide application (Sun et al., 2024). Embedding FASD awareness into developmental screening, allied health referrals, and school readiness initiatives will ensure children are accurately identified and supported (Bower & Elliott, 2016).

Recommendation: In order for Thriving Kids to meet the needs of children with FASD, training must be embedded into all existing developmental screening, early childhood, and allied health programs to ensure children with FASD are accurately identified and supported. This must include clear referral pathways, with tailored responses rather than broad developmental supports, and screening protocols that prioritise children at higher risk, such as those with known prenatal alcohol exposure or in out-of-home care.

4.3 Equity and intersectional issues

Equity and intersectional issues are critical, as FASD disproportionately affects Aboriginal and Torres Strait Islander peoples (Hamilton, Doyle & Bower, 2021; AIHW, 2015) and is often under-recognised in mainstream systems. In Indigenous communities, limited access to trained clinicians and diagnostic services, especially in remote/rural areas, creates structural barriers (AIHW, 2024). Culturally responsive research suggests that intergenerational trauma, stigma, and cultural mistrust may present barriers to disclosure of prenatal alcohol exposure and uptake of supports among Aboriginal and Torres Strait Islander communities. The Australian FASD Indigenous Framework (Hewlett et al., 2023) highlights the importance of healing-informed, strengths-based practices to overcome these challenges. Without

culturally safe, community-led assessment and support pathways, inequities in identification and care will persist (AIHW, 2023).

In rural and remote regions, particularly small rural towns, there are disproportionate shortfalls in the healthcare workforce, with significantly fewer GPs, allied health professionals, and other specialists compared with metropolitan areas (Cortie et al., 2024). With many communities relying on FIFO clinicians whose services are prioritised for children with acute or medically complex needs. The assumption that Thriving Kids can “scale up” existing services ignores the reality that in many communities, no baseline FASD-informed services currently exist. Geographical distance, high travel costs, and limited bulk-billed options further disadvantage families, while high caseloads contribute to provider burnout and workforce turnover. While telehealth has expanded and can reduce travel burdens, evidence shows it functions best as a supplementary model rather than a replacement, as it relies on already overstretched clinic staff and digital infrastructure, and often requires interpreters for Aboriginal communities (Mathew et al., 2023).

Recommendation: The government will need to provide additional funding to Aboriginal-led and CALD-informed diagnostic and support models, designed and delivered in partnership with ACCHOs and multicultural health organisations, to ensure equitable access and culturally safe care pathways. These services must be FASD informed.

4.4 Workforce support and training

Most mainstream professionals, including GPs, maternal and child health nurses, allied health staff, educators, and child protection workers, receive little or no formal training on FASD. This results in developmental differences being misunderstood or dismissed, with families reporting fragmented referral pathways and inconsistent responses. This gap begins at the university and pre-service level, where there is an absence of mandatory FASD content across health, education, and allied health curricula. As a result, graduates enter the workforce without the foundational knowledge needed to recognise and respond to FASD, perpetuating diagnostic delays and inappropriate service allocation.

International and Australian research highlights the scale of this challenge. A survey of psychologists found many lacked confidence in conducting FASD assessments or

asking about prenatal alcohol exposure, despite understanding the condition conceptually (Kerimofski, Panton, & Pestell, 2024). An evaluation of a multi-site Australian project showed that targeted clinician training significantly improved knowledge and diagnostic confidence, leading to more than 1,000 assessments and 425 diagnoses of FASD, and that trained professionals were more likely to enquire about alcohol use and make appropriate referrals (Panton, Fitzpatrick, & Pestell, 2023; Reid et al., 2020).

Similar gaps are evident internationally. A qualitative study of general practitioners in France found many had limited knowledge of FASD, discomfort raising alcohol use with women, and had rarely identified FASD in practice, underscoring the need for systematic training and culturally safe approaches (Leruste et al., 2024). A 2025 survey of 450 health professionals in two French regions reported that over 80% felt insufficiently trained, with widespread misconceptions about diagnostic criteria and confusion about referral pathways (Daoudi et al., 2025).

Recommendation: Thriving Kids should invest in a nationally funded FASD workforce capability uplift. This should include accredited CPD modules, micro-credentials, and on-the-job resources for primary care providers, educators, and allied health professionals. Embedding FASD training into pre-service education programs will ensure future workforce readiness.

4.5 Domestic and international best practice

Best practice internationally emphasises early, trauma-informed, strengths-based, and family-centred approaches. For instance, the Canadian CanFASD “Best Practices for Serving Individuals with Complex Needs” toolkit provides a comprehensive framework for multi-sectoral, goal-oriented interventions across the life span (CanFASD, 2024). In Canada, government FASD strategies include integrated prevention, diagnostic, and support pathways across health, social services, and education domains (Poole, 2008). Domestically, the Australian Government’s response to the 2024/2025 Senate FASD Inquiry commits to improved diagnostic capacity, public awareness, and coordinated supports as part of the National FASD Strategic Action Plan 2018–2028 (Australian Government, 2024).

In Australia, NOFASD has already developed a strong foundation of FASD-informed training and resources that demonstrate best practice and could be scaled with

appropriate investment. Current offerings include the Australian Foundations in FASD online course, the “Through Different Eyes” suite for early childhood educators, and the new FASD-Informed Practice for the AOD Workforce course delivered in partnership with the Australian Alcohol and Other Drugs Council. NOFASD also provides widely used tools such as Strategies Not Solutions, service planning guides, and national access to the 2025 Australian Guidelines for Assessment and Diagnosis of FASD. These initiatives highlight the capacity of a community-led, lived-experience-informed organisation to deliver high-quality training and resources across sectors.

Australia has also produced internationally recognised examples of best practice through broader partnerships. The Every Moment Matters national campaign and the Aboriginal-led Strong Born initiative demonstrate how prevention and awareness can be delivered with reach and cultural safety. The recently developed FASD Indigenous Framework, released as part of the 2025 NHMRC Australian Guidelines for the Diagnosis of FASD, provides a culturally responsive model to support assessment and diagnosis with Aboriginal and Torres Strait Islander peoples. The framework emphasises strengths-based, community-designed approaches and highlights the importance of embedding cultural safety and healing-informed practice in all stages of care (Australian FASD Guidelines Development Group, 2025).

Building on these foundations, Thriving Kids has an opportunity to align with and scale what works, ensuring consistency across all universal and targeted services.

Recommendation: Thriving Kids should explicitly align its design with international best practice and with the Commonwealth’s commitments to improve diagnostic capacity, public awareness, and coordinated supports, arising from the Senate FASD Inquiry. This would ensure consistency and avoid duplicating reform efforts.

4.6 Seamless transitions through mainstream systems

Families raising children with FASD frequently describe navigating a maze of disconnected systems, highlighting the need for seamless transitions through mainstream systems and the design of Thriving Kids foundational supports to avoid one-size-fits-all pathways. Common experiences include long waits for assessment, lack of interim supports, and repeated referrals across services without coordinated care (NOFASD, 2023). Too often, children are excluded from early intervention

services unless they already hold a NDIS plan, which delays access to the very assessments required to demonstrate eligibility. This creates a cycle of disadvantage where early developmental concerns go unaddressed, families become exhausted, and children miss the window for timely intervention (NOFASD, 2023; Elliott et al., 2025).

A further risk is that Thriving Kids may adopt a ‘one-size-fits-all’ model that groups all neurodevelopmental conditions together. This approach obscures the distinct needs of children with FASD and creates generic referral pathways that fail to provide specialist guidance. For families, this results in continued fragmentation and unmet needs, even within programs intended to deliver foundational supports.

The recently piloted Inklings program, developed by the Kids Research Institute, demonstrates the promise of early, pre-emptive support for babies aged 6 to 18 months showing early differences in social interaction and communication (Investment Dialogue for Australia’s Children [IDAC], 2024). Trials have shown that participation can reduce later developmental difficulties and deliver strong economic returns (IDAC, 2024). Inklings also highlights the importance of designing supports that are flexible and condition-specific. While such models are promising for babies with prenatal alcohol exposure, they remain under development and currently limited to a small number of jurisdictions. Moreover, developmental differences can present in subtle ways, meaning Thriving Kids must avoid a universalised approach and ensure that early pathways are responsive to the diverse presentations and needs of children.

A seamless pathway, from universal developmental checks, through assessment and diagnosis, to evidence-based supports, would reduce stress for families and improve outcomes. International best practice demonstrates the value of integrated pathways that bring together maternal and child health, primary care, allied health, early childhood education, and schools (CanFASD, 2024; Public Health Agency of Canada, 2021). Such approaches ensure that families receive guidance and support at the first point of concern, rather than being passed between systems.

For Aboriginal and Torres Strait Islander families, shame, stigma, and mistrust of services can present additional barriers to disclosure of prenatal alcohol exposure and engagement with diagnostic pathways (Australian FASD Guidelines

Development Group, 2025). Embedding culturally safe and community-led supports within mainstream systems is essential to ensuring equitable access and preventing widening disparities.

Recommendation: Thriving Kids should prioritise the development of clear referral pathways and cross-sector collaboration to ensure that children with suspected neurodevelopmental disability, including FASD, are supported at the first point of contact. This must include culturally safe approaches, the removal of unnecessary prerequisites (such as requiring a NDIS plan before accessing intervention), and safeguards against ‘one-size-fits-all’ models. Referral pathways must embed condition-specific expertise, ensuring that the unique needs of children with FASD are not overlooked within broad developmental categories.

5. STAKEHOLDER PERSPECTIVES AND LIVED EXPERIENCE

Families and carers consistently report that raising a child with FASD involves navigating fragmented systems, long waits for assessment, and repeated dismissal of their concerns. Many describe being blamed for their child’s challenges or told that difficulties are the result of poor parenting, rather than recognised as disability-related needs (NOFASD, 2023; NOFASD, 2025 survey).

The stigma surrounding FASD continues to create barriers to diagnosis and support. Parents often feel judged when disclosing prenatal alcohol exposure, and professionals are not always equipped to respond with sensitivity or knowledge. As one caregiver reflected:

“We have experienced challenges and barriers with understanding in multiple systems - education, child protection, justice, physical health, mental health, dental, community access e.g. sports, alcohol services, Centrelink/welfare services, NDIS, family and friends. Our child looks ‘normal’, with an average IQ, yet functions as a small child.” (NOFASD, 2025)

Others reported feeling silenced or ridiculed when raising FASD with professionals:

“I was told my foster children had the ‘right to a normal childhood’ by our paediatrician. And that a label would do more harm than good. Actually, it has been very helpful- as has changing paediatricians, twice, to find someone knowledgeable. NDIS is a massive help. As

has NOFASD, for training, resources and support. Very, very grateful!” (NOFASD, 2025 survey)

These experiences show how stigma, lack of professional understanding, and fragmented pathways combine to leave families isolated. As another respondent described:

“We do not have time to even begin to reconcile the number of and different experiences with Stigma! We have multiple negative experiences with the Education Department, Department of Communities, Medical services, Therapy suppliers, Sporting etc, not just for our kids but for multiple other children we have attempted to support.” (NOFASD, 2025 survey)

These voices highlight why Thriving Kids must be built on family perspectives, cultural safety, and disability-informed practice. Embedding lived experience into design, delivery, and evaluation will ensure that supports are not only evidence-based but also respectful, accessible, and genuinely responsive to the needs of children and their families.

6. CONCLUSION

The Thriving Kids initiative risks repeating systemic failures if it is rolled out without sufficient planning, consultation, and workforce development. The current rapid timeline does not allow for the upskilling and resourcing of clinicians, educators, and allied health professionals needed to meet the complex needs of children with FASD. Assumptions that existing services can simply expand to absorb demand are unrealistic, given current shortages and long wait times. Furthermore, the lack of meaningful consultation with parents, carers, and people with lived experience undermines the reform’s capacity to deliver effective and trusted supports.

For too long, families raising children with FASD have faced stigma, fragmented systems, and delayed or inadequate services. Failure to invest in early, targeted FASD supports is not cost neutral. Children who are under-served are over-represented later in the justice system, alcohol and other drug services, unemployment, and mental health treatment. Early recognition and tailored intervention through Thriving Kids would reduce these avoidable downstream costs.

Despite its prevalence, FASD remains poorly recognised in mainstream health,

education, and community settings, leaving children and families without the supports they urgently need.

By embedding FASD into the design of Thriving Kids, the Australian Government can ensure that children with prenatal alcohol exposure are not overlooked. This means:

  • Implementing universal screening and family-friendly resources at early entry points;
  • Establishing nationally consistent diagnostic pathways for children at risk of FASD;
  • Funding culturally safe, community-led supports for Aboriginal and Torres Strait Islander families and CALD communities;
  • Embedding FASD training into pre-service education and continuing professional development across health, education, disability, and justice workforces;
  • Creating seamless referral pathways across health, education, and social systems to reduce stress and prevent missed opportunities for intervention; and
  • Investing in early, targeted FASD supports to reduce long-term costs to justice, health, and welfare systems

NOFASD Australia stands ready to contribute its expertise, lived-experience insights, and existing best-practice resources to strengthen the implementation of Thriving Kids. With appropriate investment and genuine consultation, the initiative can move beyond a “one-size-fits-all” model and deliver condition specific supports which can be scaled nationally, to ensure that every child, regardless of diagnosis, postcode, or cultural background, has the chance to thrive.

7. REFERENCES

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