Concerns regarding reduced access to disability supports for people living with Fetal Alcohol Spectrum Disorder (FASD) (DRO advocacy)

Submission 363

Submission to the Senate Community Affairs Legislation

Committee: National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026 NOFASD Australia Ltd. 29.05.2025

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

Submission 363

NOFASD Australia Submission to the Senate Community

Affairs Legislation Committee

National Disability Insurance Scheme Amendment (Securing the

NDIS for Future Generations) Bill 2026

1. INTRODUCTION NOFASD Australia is the national peak organisation for Fetal Alcohol Spectrum Disorder (FASD). We represent and support individuals, families, carers, and professionals across Australia. We are making this submission because the proposed reforms risk reducing access to essential disability supports for people living with Fetal Alcohol Spectrum Disorder (FASD) and other complex neurodevelopmental disabilities. We are hearing consistent and escalating concern from families and adults living with FASD that changes to eligibility, planning and what is considered “reasonable and necessary” are likely to result in reduced supports, increased safety risks, and greater reliance on unpaid care. These impacts will not remove need; they will shift risk and cost to families, communities, and higher-cost service systems.

FASD is a lifelong, complex, brain-based disability, and is recognised as an acquired brain injury occurring before birth, with support needs that change across the lifespan rather than reduce over time. For people who rely on the NDIS, stable and appropriate supports are foundational to ensure equity, community participation, wellbeing and safety.

NOFASD’s work includes the delivery of a free, confidential national helpline, education and workforce training, evidence-based resources, and national advocacy informed by lived and living experience. Through this work, we engage daily with people navigating disability, health, education, and justice systems, and we observe systemic patterns that affect access to appropriate supports.

This submission reflects the experiences of people living with FASD, their families and carers, and professionals across multiple service systems. It draws on lived experience insights, evidence from Australian and international research, and service navigation challenges identified through NOFASD’s national helpline. FASD is a hidden disability, and while each individual has unique strengths and support

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needs, many people experience significant and lifelong impacts on daily functioning, communication, learning, and participation.

2. OVERALL POSITION NOFASD Australia understands the intent of the Bill to strengthen the long-term sustainability and integrity of the National Disability Insurance Scheme (NDIS), including efforts to ensure that the Scheme remains available for future generations. We recognise the importance of maintaining a system that is both effective and financially sustainable.

However, sustainability must not come at the expense of equitable access. People living with FASD frequently experience barriers to recognition within mainstream systems. FASD is often under-identified or misdiagnosed as other neurodevelopmental conditions, and individuals may have difficulty demonstrating disability-related needs within standardised frameworks. As a result, policy settings that rely heavily on clearly defined diagnoses or linear measures of functioning risk overlooking people whose disability presents in complex or variable ways.

Without explicit consideration of neurodevelopmental disabilities such as FASD, there is a risk that the proposed reforms will reduce access to appropriate supports, increase reliance on unsupported or inappropriate service systems, and lead to poorer long-term outcomes across health, education, and justice contexts. This includes increased pressure on families and carers, heightened risk of carer burnout, and significant impacts on the mental health and wellbeing of both individuals living with FASD and those who support them. Reduced supports do not remove need, they shift responsibility, often resulting in increased burden of care, instability in caregiving arrangements, and greater demand on other service systems. A sustainable NDIS must therefore be both financially viable and responsive to the complexity and diversity of disability experiences

3. THE SCALE AND IMPACT OF FASD Fetal Alcohol Spectrum Disorder (FASD) is a lifelong, complex, brain-based disability caused by prenatal alcohol exposure (PAE), affecting learning, memory, attention, communication, emotional regulation, and adaptive functioning. National modelling

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estimates that approximately 3.64% of the Australian population are living with FASD, equivalent to around one child in every classroom (Tsang et al., 2025).

While this provides an important baseline, the authors note it is likely that some vulnerable populations have significantly higher prevalence (Tsang et al., 2025). Evidence from Australia supports this concern. For example, a comprehensive population-based study conducted in the Fitzroy Valley (WA) identified FASD in 19% of children aged 7–8 years, and research in a youth justice setting in WA found that 36% of assessed children and adolescents had FASD (with 74% identified as Indigenous) (Tsang, Bower & Elliott, 2020). These findings highlight the disproportionate impact of FASD in vulnerable populations and reinforce the need for culturally safe, accessible pathways to diagnosis and support. They also demonstrate the significant consequences of delayed diagnosis and gaps in support, particularly where disability is not recognised early or appropriately responded to.

FASD is often described as a hidden disability; however, its impacts are pervasive and affect both neurological and physical functioning. Many individuals experience significant challenges with daily living, including communication, self-regulation, organisation, and safety awareness. These impacts are not always visible to others, and individuals may appear capable in structured or supported environments while experiencing substantial difficulty navigating everyday life and complex systems.

NOFASD Australia also hears from adults living with FASD about the day-to-day functional impact of an unseen disability. One person described living with significant fatigue, autonomic and sensory challenges, and cognitive overload that can make everyday tasks like meal preparation, personal care, and life administration difficult to initiate and sustain. They described relying on practical supports, including help with organising appointments, responding to correspondence, and maintaining daily routines, in order to maintain even limited paid employment, and expressed fear that losing these supports would compromise their ability to maintain employment and daily functioning.

Children and young people living with FASD face elevated risks of disrupted schooling, mental health challenges, involvement with out-of-home care, and later contact with the justice system (Elliott et al., 2020). These risks are further compounded by high rates of co-occurring neurodevelopmental conditions, including

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ADHD and autism, as well as exposure to trauma (Elliott et al., 2020; Lange et al., 2017). FASD can also disproportionately affect Aboriginal and Torres Strait Islander children, while culturally safe prevention, diagnostic, and support pathways remain limited (Australian FASD Guidelines Development Group, 2025).

Despite the scale and complexity of need, FASD remains under-recognised across key entry points including maternal and child health, general practice, allied health, education, and early childhood systems. Families frequently report stigma, blame, and repeated dismissal of concerns, contributing to delayed diagnosis, limited access to appropriate supports, and increased vulnerability over time.

Eligibility

The Bill introduces changes that clarify eligibility, including a stronger emphasis on functional capacity and permanence. While this approach aims to improve consistency and sustainability, it presents particular challenges for people living with FASD. FASD is a lifelong, complex, brain-based disability, and functional impairment can be significant yet highly variable across contexts and over time. Families describe a recurring pattern where an individual may appear to cope in a short appointment or structured setting, yet experience substantial impairment in daily life when expected to regulate emotions, manage safety, organise routines, and navigate demands independently.

We are hearing strong concern that standardised or “snapshot” functional assessments sometimes capture a person’s best presentation rather than their day-to-day disability support needs. For people living with FASD, support needs are often context-dependent: the same person who can engage in a structured activity will still require scaffolding, supervision, and consistent assistance to maintain safety and daily functioning in less predictable environments. If eligibility decisions rely too heavily on brief observation or narrow interpretation of functional capacity, people with lifelong disability-related needs may be assessed as “too capable” to qualify for supports and excluded from essential supports. The majority of individuals living with FASD experience age dysmaturity and can be highly suggestable and agreeable. Having a caregiver or personal advocate can be vital to assist the person to articulate their daily challenges.

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NOFASD Australia also hears from adults living with FASD about the day-to-day functional impact of an unseen disability.

No one can ‘see’ it… and trying to explain that your nervous system dysfunction or cognitive load/overwhelm stops you from being able to do basic things like stand up in the shower or make a meal, is hard…

Many individuals with FASD do not have a formal diagnosis due to barriers including limited access to diagnostic services, long wait times, cost, stigma associated with prenatal alcohol exposure, and limited awareness within professional systems. This can leave families trying to “prove” lifelong disability impacts through fragmented evidence while simultaneously managing care, schooling pressures, appointments, and crisis points. Diagnosis is often delayed until middle childhood, with many families reporting that children are not identified until school age, despite early signs of developmental difference. Access to diagnostic services is limited, with waitlists commonly extending to years, and the cost of multidisciplinary assessment creating significant barriers for families seeking clarity and support. The burden is often greatest for families in rural and remote areas and for Aboriginal and Torres Strait Islander families, where culturally safe and accessible diagnostic and support pathways may be limited and disadvantage can compound risk.

Eligibility settings that treat FASD as a condition that should become less impactful over time do not align with research, clinical or lived experience findings. Families describe that disability support needs may shift across the lifespan rather than reduce, and that transitions can intensify functional challenges and support requirements.

Families consistently describe that disability impacts are most visible in real-world contexts, not during brief assessments. Individuals with FASD can present as compliant, agreeable and highly suggestible, particularly when in new, anxiety provoking or stressful environments such as the planning context.

In appointments they can seem ‘fine’ but at home and in the community, they need constant scaffolding for regulation, safety and

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everyday routines. The assessment doesn’t show what daily life actually requires.

Families also strongly challenge the assumption that “informal supports” can replace funded disability supports. Many already rely heavily on extended family and informal help, yet report that the level of need associated with FASD and co-occurring neurodevelopmental conditions can make informal care unsafe or unrealistic. Carers describe limited opportunities for rest and recovery, including situations where it is not safe to leave children with relatives in the way other families can. When respite and support worker hours are treated as discretionary rather than essential for sustaining safe care, the risk of carer burnout increases and caring arrangements can become harder to maintain over time, shifting responsibility from the NDIS to families until crisis points are reached. What we hear from carers is that informal care has limits, particularly where disability support is essential for safety and sustainability. This level of coordination and supervision is not simply part of parenting or caregiving; it is ongoing disability support. Unlike typical developmental needs, these supports remain essential across the lifespan. Just as a person with a physical disability continues to require mobility aids, or a person with vision impairment requires corrective lenses, individuals with FASD require consistent scaffolding and support to function safely and participate in daily life.

People assume extended family can step in like they do for other families. For us, that isn’t safe or sustainable. Without respite and support worker hours, the caring load becomes unmanageable and families burn out.

Supports (reasonable and necessary supports) The Bill strengthens the link between impairment and funded supports, reinforcing the requirement that supports must be directly related to a person’s disability. For people living with FASD, disability-related support needs commonly include impacts on memory, executive functioning, emotional regulation, adaptive functioning, and safety awareness. These impacts are frequently misunderstood as “behavioural” rather than recognised as disability-related functional impairment, particularly when a person’s needs are variable and context-dependent.

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If supports are interpreted narrowly, there is a risk that essential supports will be excluded on the basis that they relate to psychosocial or behavioural presentation rather than disability-related functioning. This risks removing preventative and stabilising supports that are foundational to daily living, participation, and safety, and may increase reliance on higher-cost crisis responses and other service systems.

I’m trying to maintain work/life, but I’m exhausted and emotional. Overwhelmed by my commitments, life admin and general selfcare….I do have therapists, physio and support workers to talk to, help me organise my schedule, respond to emails, book appointments, make me food, tell me to drink water, fold my laundry, ultimately so I can maintain a job 2 days a week and not be malnourished. The idea that the government is actively working to kick me off these supports is terrifying.

Recent modelling tabled in the Senate indicates that the largest area of projected savings under the proposed reforms is associated with changes to social and community participation and capacity building supports, with an estimated $13.2 billion in savings between 2026 and 2030. The next largest area of savings is linked to the introduction of an “objective test” of substantially reduced functional capacity, estimated at $9.3 billion over a similar period. These figures indicate that a significant proportion of projected savings are expected to be realised through changes to the types of supports described above, and through more restrictive interpretations of functional capacity (Department of Health, Disability and Ageing, 2026).

Many people living with FASD experience changes in support needs across the lifespan rather than a reduction in need. In particular, adolescence and transition stages often increase functional demands and risks as expectations for independence rise (for example, more complex learning environments, social pressures, and increased system navigation). Dysmaturity, where developmental maturity does not match chronological age across cognitive, emotional, and social domains, can become more pronounced during adolescence when expectations increase, even when a young person appears capable in some areas.

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NOFASD Australia is hearing strong concerns about rhetoric that frames community participation and social supports as non-essential. For many people living with FASD and other neurodevelopmental disabilities, supported participation is a primary way they build confidence, relationships, communication skills, and emotional regulation. Families describe how structured community activities can be one of the few settings where a child experiences belonging and success, particularly when support workers or skilled adults help them engage safely and effectively. Where these supports are removed, families anticipate that participation will become unsafe or unsustainable, leading to isolation and loss of protective factors that support long-term wellbeing.

What we hear from families is that social participation supports are not “extras”— they are often the supports that keep a child connected, regulated, and safe.

These ‘normal’ activities where our kids get to belong and participate are so important. Cancelling them won’t save money, it will just push the cost down the road for a bigger spend later.

Families also describe how strengths and interests can be central to participation. For example, a child’s engagement in sport may be the primary way they connect socially and maintain regulation, yet the level of support required can be well beyond what same-age peers need. Families report that support workers play a practical role in enabling participation, including communication support, understanding instructions, maintaining safety, and navigating routines. If social inclusion funding is reduced, families anticipate losing access to these “ordinary” childhood experiences despite their significant contribution to development and wellbeing.

A consistent theme emerging through plan reviews is that supports reduced or removed are often those delivering the most meaningful benefit at the person’s current stage of life, particularly capacity building and community participation supports. At the same time, families report limited ability to reallocate reduced funding towards what actually works for the individual, and describe situations where funded items are those the person cannot engage with or actively rejects. This mismatch can lead to reduced outcomes and regression of skills, not because need has decreased, but because funded supports are not fit for purpose.

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Families report that funding decisions can leave them with supports that don’t work, while the supports that do work are removed.

Often the supports that are reduced or removed are the ones that make the biggest difference… while the items approved are the very ones that have proved least useful.

Families have also raised concerns about expectations that supports must be “exhausted” or “completed”, noting that engagement in supports can be non-linear for people with FASD and does not reflect reduced need. Where a person cannot access or engage with a service (because it is not FASD-informed, is not a good fit, or is unavailable), reduced utilisation may reflect system barriers—not reduced disability-related need.

Families and carers also describe the cumulative load of managing multiple allied health appointments, school meetings, and system navigation to maintain consistency of supports and scaffolding. They report fatigue from having to repeatedly educate services around them—school, health, disability, housing, employment, and sometimes justice—about how FASD impacts functioning and why supports are necessary. This burden of care is not “just parenting”; it is sustained disability support work that becomes unmanageable when formal supports are reduced.

What we hear from carers is that supports are the difference between sustainability and burnout.

Many of us fought long and hard to get appropriate funding so we could have ‘normal’ aspirations like maintaining employment… The fear is real that we may go backwards.

Many people living with FASD also have co-occurring neurodevelopmental conditions such as ADHD and autism, and their support needs are often interconnected rather than attributable to a single diagnosis. Families are concerned that if funding is narrowed for one component of disability, flow-on effects may destabilise overall functioning and participation. This reinforces the importance of

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“whole-of-person” planning that recognises how supports work together to maintain safety, stability, and inclusion.

Finally, access to appropriate supports is also shaped by availability and affordability. Diagnostic assessment for FASD is complex and commonly requires multidisciplinary input, which can be difficult to access and can create significant cost barriers for families and adults seeking diagnosis and support.

Planning and reassessment The Bill includes changes to planning processes, including plan renewals, reassessment criteria, and mechanisms for suspending plans. For people living with FASD, consistency and predictability of support are critical. Many individuals require long-term, stable supports that do not fluctuate significantly over time, even though their presentation may vary in different environments.

Frequent reassessments or more restrictive reassessment pathways will create uncertainty for individuals and families and increase administrative burden. Executive functioning differences are a core feature of FASD and are central to how the disability presents in daily life. These differences affect planning, organisation, memory, decision-making, impulse control, and the ability to manage complex information and processes. These are also the very skills required to engage with NDIS planning and reassessment processes. As a result, people living with FASD may be disproportionately impacted by systems that rely on these capabilities, requiring additional support to gather information, participate in planning conversations, understand funding structures, and implement plans effectively. Without this recognition, the planning and reassessment process itself can become a barrier, creating inequity for individuals whose disability directly affects their ability to navigate it.

Families also report that planning conversations are not consistently FASD informed. Parents describe frustration where the complexity and variability of FASD presentation is not well understood, and where goals focused on preventing or mitigating secondary impacts are not valued. Families report that attempts to separate functional impacts by diagnosis do not reflect the clinical reality of FASD, where neurodevelopmental conditions often overlap and interact. Concerns have also been raised about approaches that move toward automated or standardised

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planning, as families with multiple children living with disability or complex circumstances may have less capacity to absorb gaps in formal supports. A family centred understanding is essential to ensure plans remain individualised, safe, and realistic. There is also uncertainty about how early intervention pathways outside the NDIS will meet the needs of children with FASD, particularly where approaches are not FASD-informed.

Safeguards, integrity, and provider regulation The Bill strengthens safeguards, compliance, and provider regulation to address fraud and improve the integrity of the Scheme. NOFASD Australia supports measures that protect participants and ensure that funding is used appropriately. However, it is important that these measures are balanced with the need to maintain access to skilled and appropriate providers.

People living with FASD require providers with specific expertise in neurodevelopmental disability and who are FASD-informed, as well as approaches that are trauma-informed, strengths-based, and relationship-focused. In many areas, particularly regional and remote communities, access to such providers is already limited. There is a significant risk that increased regulatory requirements, without corresponding investment in workforce capability, may reduce the availability of providers and further restrict access to appropriate supports.

Families also report that continuity and quality of the support workforce is critical for safety and effectiveness, particularly where children are vulnerable, highly compliant, or experience significant anxiety. Some parents describe moving to direct employment or self-management models after adverse experiences, in order to vet, train, and supervise workers, reduce turnover, and maintain consistent relationships. They view this approach as improving safety, stability, and value for money. Families have expressed concern that future restrictions on these options could reduce quality and continuity of care, and make it harder to sustain a safe “village” of support around the person.

Families describe situations where reduced supports would materially increase safety risks, particularly for children with impulsivity and high risk-taking behaviour. They emphasise that capacity building is important, but cannot be progressed without adequate supervision and support to maintain safety in daily life. Where

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essential supervision and core supports are reduced, families report concerns about escalation into crisis responses, including increased demand on emergency, health, and child safety systems. Preventative, stabilising supports are therefore not optional; they are a safeguard that reduces harm and longer-term costs.

4. RECOMMENDATIONS NOFASD Australia recommends that the Committee ensure that implementation of the Bill:

• Recognises lifelong and complex neurodevelopmental disability Recognises the needs of people living with lifelong neurodevelopmental disabilities and acquired brain injury, specifically FASD. Functional impacts are complex, variable, and context-dependent.

• Supports flexible and accessible eligibility pathways Requires eligibility frameworks to allow for flexible, context-based assessments of functional capacity, and not rely solely on formal diagnosis as a gateway to support. Improves access pathways for individuals who experience significant functional impairment but face barriers to diagnosis.

• Ensures reasonable and necessary supports reflect disability-related needs Explicitly recognises supports addressing cognitive, behavioural, and executive functioning needs as disability-related and essential. Maintains access to early and preventative supports, recognising that timely intervention improves long-term outcomes and reduces reliance on crisis and higher-cost systems.

• Strengthens planning and reassessment processes Ensures planning and reassessment processes are accessible and responsive to people with cognitive, communication, and executive functioning differences. Minimises unnecessary reassessment and promotes stability of supports for people with lifelong disability.

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• Invests in workforce capability and system integration Builds FASD-informed capability across the disability workforce, including planners, providers, and decision-makers. Ensures regulatory changes do not unintentionally reduce provider availability. Strengthens coordination between the NDIS and other systems, including health, education, and justice, to prevent individuals from falling through gaps in support.

5. CONCLUSION

The National Disability Insurance Scheme Amendment (Securing the NDIS for

Future Generations) Bill 2026 represents a significant reform agenda for the NDIS. NOFASD Australia understands the intent to strengthen long-term sustainability and integrity; however, we are concerned about the scale and pace of proposed changes and the limited assurance available at this stage about how people with lifelong, complex neurodevelopmental disability, particularly FASD, will be protected from unintended exclusion or reductions in essential supports.

If not carefully designed and implemented, the proposed reforms risk reducing access to supports that are essential for daily functioning, safety, and participation, and shifting burden of care to families and carers. This is not sustainable reform: reduced supports do not remove need, they shift risk and cost to families, communities, and higher-cost systems including health, mental health, education, child protection, and justice.

Access to appropriate disability supports is fundamental to participation, inclusion, and dignity, and should not be treated as discretionary or “nice to have” where it is necessary to enable everyday life. NOFASD Australia welcomes the opportunity to contribute to this inquiry and stands ready to support reforms that are evidence-informed, FASD-informed, and genuinely sustainable because they protect access to the right supports at the right time across the lifespan.

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7. REFERENCES

• Australian FASD Guidelines Development Group. (2025). Australian guidelines for the assessment and diagnosis of fetal alcohol spectrum disorder. (2025). FASD Hub. https://fasdhub.org.au/wp-content/uploads/2025/05/Main-guidelines full-version.pdf

• Elliott, E. J., Tsang, T. W., Rosenblatt, D., & Parta, I. (2025). Estimating the prevalence of fetal alcohol spectrum disorder in Australia. Drug and Alcohol Review, 44(3), 210–222.

• Lange, S., Probst, C., Gmel, G., Rehm, J., Burd, L., & Popova, S. (2017). Global prevalence of Fetal Alcohol Spectrum Disorder among children and youth: A systematic review and meta-analysis. JAMA Pediatrics, 171(10), 948–956.

• Tsang, T. W., Elliott, E. J., Latimer, J., Oscar, J., Fitzpatrick, J. P., Watkins, R. E., … & Bower, C. (2025). Prevalence of Fetal Alcohol Spectrum Disorder in Australia: National modelling study. Medical Journal of Australia, 222(3), 123–131

• Tsang, T. W., Bower, C., & Elliott, E. J. (2020). Early diagnosis of fetal alcohol spectrum disorder in Indigenous children. National Health and Medical

Research Council. https://www.nhmrc.gov.au/about-us/resources/early-

diagnosis-fetal-alcohol-spectrum-disorder-indigenous-children

• Department of Health, Disability and Ageing. (2026). NDIS reform modelling (tabled documents, Senate Orders for Production of Documents).

https://www.aph.gov.au/Parliamentary Business/Tabled Documents/16585

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