NOFASD Australia has formally submitted our response to the Senate Community Affairs Legislation Committee inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
This submission brings together lived and living experience, frontline insights from our national helpline, and current evidence to highlight the real-world impact of proposed reforms for people living with Fetal Alcohol Spectrum Disorder (FASD), their families and carers.
At its core, our message is clear: access to appropriate disability support is not a luxury – it is fundamental to safety, dignity, participation and human rights.
Why this submission matters
FASD is a lifelong, complex, brain-based disability with support needs that change across the lifespan rather than reduce over time.
It is also a hidden disability, many people experience significant challenges with daily functioning, communication, organisation and safety that are not always visible in short appointments or structured settings.
Through our work, we hear consistently from families, carers and adults living with FASD that:
- Supports are often the difference between stability and crisis
- Disability-related needs are frequently misunderstood or overlooked
- Access to appropriate supports remains inconsistent and difficult to navigate
Proposed changes to eligibility, planning and what is considered “reasonable and necessary” risk reducing access to essential supports, particularly for people whose disability presents in complex and variable ways.
Our key message: reducing support does not reduce need
One of the strongest themes in our submission is simple but critical:
Reducing supports does not reduce need – it shifts risk, harm and cost onto families, communities and already stretched systems.
When supports are reduced, the impact does not disappear. Instead, it is shifted:
- onto families and carers, increasing burnout and stress
- onto other systems, including health, education and justice
- into crisis responses that are more costly and less effective
As highlighted in our submission, preventative and stabilising supports are essential safeguards, not optional extras.
Supports are not ‘nice to have’ – they are essential
For people living with FASD, supports such as:
- daily living assistance
- community participation
- capacity building and skill development
are not discretionary.
They are often the supports that enable:
- safety in everyday environments
- meaningful participation in school, work and community
- connection, belonging and wellbeing
When these supports are removed or narrowed, families report increased risk, reduced participation and loss of critical protective factors.
What we heard – and what we shared
Our submission is grounded in what people living with FASD, families and carers told us through our national helpline services, and during our training and community engagement.
Across these conversations, several consistent themes emerged:
Daily life requires ongoing support
People described needing practical, day-to-day supports to manage tasks such as organising appointments, preparing meals, managing routines and maintaining employment. These supports are not occasional – they are essential for everyday functioning.
Disability is often misunderstood or overlooked
Many shared that FASD-related support needs, particularly around memory, executive functioning, emotional regulation and fatigue, are not always recognised as disability-related, especially when they are not immediately visible.
Short assessments don’t reflect real life
Families consistently told us that brief or structured assessments can miss the realities of day-to-day functioning, where support is needed for safety, regulation and routine.
Informal care has limits
Carers described high and sustained support demands, with limited opportunity for rest. Many emphasised that informal supports cannot safely replace funded disability supports.
The right supports make participation possible
Support workers, structured activities and community participation were described as critical for connection, confidence and wellbeing, not “extras”, but core supports that enable inclusion.
There is real fear about losing support
Some individuals and families expressed concern that changes to the NDIS may result in reduced access to the supports they rely on to remain safe, well and engaged in everyday life.
When supports don’t match needs
What is funded does not always reflect what people actually need — and the supports most at risk of being reduced are often those making the biggest difference. Changing needs should not be mistaken for reduced need for support.
These experiences highlight a gap between how disability is understood in policy and how it is experienced in everyday life.
What needs to change
NOFASD Australia is calling for reforms that are both sustainable and equitable.
This includes:
- Recognising FASD as a lifelong, complex neurodevelopmental disability
- Ensuring flexible, accessible eligibility pathways, including for those without formal diagnosis
- Maintaining access to preventative, capacity-building and participation supports
- Providing stable and consistent supports across the lifespan
- Investing in a FASD-informed workforce across disability and mainstream systems
A sustainable NDIS must be an equitable NDIS
We recognise the importance of maintaining the long-term sustainability of the NDIS.
However, sustainability cannot come at the cost of equitable access.
If reforms result in reduced access to essential supports, the outcome is not efficiency – it is displacement of need into families, communities and higher-cost systems.
A sustainable NDIS is one that:
- recognises the diversity and complexity of disability
- responds to lived experience
- provides the right supports at the right time
Our commitment
NOFASD Australia remains committed to working with government, sector partners and communities to support reforms that are:
- evidence-informed
- FASD-informed
- grounded in lived and living experience
Because for people living with FASD, access to appropriate support is not optional – it is essential for everyday life, safety and participation. We will continue to advocate for an NDIS that recognises and responds to the needs of people living with FASD and other complex neurodevelopmental disabilities.