Submission 805
Foundation for Angelman Syndrome Therapeutics Australia (FAST Australia)
Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
FAST Australia supports reforms that strengthen the long-term sustainability of the National Disability Insurance Scheme while ensuring it continues to meet the needs of Australians living with permanent, significant and complex disability. We also believe it is important that reforms continue to work for the people the Scheme was originally designed to support.
Angelman syndrome is a rare genetic neurodevelopmental condition characterised by severe intellectual disability, absent or minimal speech, behavioural and emotional regulation challenges, epilepsy, sleep disturbance and lifelong support needs. There is currently no cure. Approximately 1,700 Australians are living with Angelman syndrome.
The trajectory of Angelman syndrome is well understood. Children grow into adults who continue to require substantial support across communication, personal care, decision-making, community participation and safety. People living with Angelman syndrome represent the original intent of the NDIS: Australians living with permanent, significant and complex disability who will require intensive support throughout their lives.
FAST Australia is the national patient organisation for Angelman syndrome. We support families across Australia, fund nurse-led care navigation services, partner with multidisciplinary clinics and maintain a global patient registry that has tracked the natural history of Angelman syndrome for more than a decade. Together, these activities provide insight into the lifelong support needs of individuals living with Angelman syndrome and the systems that support them.
Diagnosis should continue to inform planning.
FAST Australia supports individualised planning based on need. However, for conditions such as Angelman syndrome, where profound lifelong disability is already well understood, diagnosis should continue to inform planning and decision-making.
We are not advocating for diagnosis-based funding. We are advocating for recognition that some conditions are permanent, predictable and lifelong.
Through our nurse-led asnavigators Program, and amongst our community, it’s reported that families, clinicians and allied health professionals are investing significant time and resources in reassessments, reports and supporting evidence for conditions whose permanence is already well established. This creates a burden for families and reduces valuable clinical and allied health time that could otherwise be directed toward participant care.
Repeatedly requiring families and clinicians to prove permanence creates unnecessary burden and cost without improving outcomes. Ignoring diagnosis risks overlooking the value of long-term planning for participants whose disability is permanent, predictable and lifelong. For these individuals, the challenge is not determining whether support will be required, but ensuring the right supports are available at the right time across the lifespan.
The Foundation for Angelman Syndrome Therapeutics Australia Limited ABN 33 141 728 038
Submission 805
Safety and supervision are often underestimated.
While therapies and supports can improve quality of life and functioning, people living with Angelman syndrome continue to require substantial support throughout their lives.
Support needs are often determined not by whether a person can perform a task, but whether they can do so safely. Communication difficulties, cognitive disability, behavioural regulation challenges, epilepsy, supervision requirements and impaired danger awareness all contribute to ongoing support needs that may not be captured through functional assessment alone. Assessment frameworks should explicitly recognise safety, supervision and safeguarding needs alongside observable functional capacity.
Adulthood remains a major gap.
One of the most consistent challenges reported by families is the transition from childhood into adulthood. As school-based supports end, many individuals simultaneously age out of multidisciplinary paediatric healthcare services, creating a significant shift in both disability and healthcare support systems.
Support needs do not diminish when school ends, yet opportunities for meaningful participation often do. At the same time, families find themselves once again navigating assessments, reports and reviews to demonstrate the permanence and severity of a disability that has not changed.
The lifelong nature of Angelman syndrome and the substantial support needs that persist into adulthood are already well documented. The challenge is not determining whether support will be needed, but ensuring the right supports remain available throughout adulthood.
Many individuals with Angelman syndrome require highly individualised supports and ongoing 1:1 assistance to safely participate in their communities. Significant anxiety, behavioural challenges, communication difficulties and supervision needs often mean group-based supports are not appropriate or safe.
These supports should not be viewed as merely discretionary social activities. They are essential for communication, regulation, inclusion, well-being, and quality of life. When support reduces, the need for care does not disappear. It is simply transferred back onto families, many of whom are also trying to remain in the workforce and maintain their own health and well-being.
Maintaining function is a legitimate outcome.
For many people living with profound neurodevelopmental disability, success cannot and should not be measured by increasing independence. Success is maintaining communication, mobility, regulation, participation, safety and quality of life.
Assessment and planning frameworks should continue to recognise maintenance, stability and prevention of deterioration as legitimate outcomes.
The Foundation for Angelman Syndrome Therapeutics Australia Limited ABN 33 141 728 038
Submission 805
Participants with the highest needs should not have the fewest workforce options.
Families supporting individuals with complex behavioural and safeguarding needs consistently report workforce challenges.
Participants requiring behavioural support plans or oversight of restrictive practices often have fewer workforce options despite greater support needs. This can create a situation where the participants requiring the most specialised support have the least flexibility in accessing it.
For individuals with Angelman syndrome, behavioural regulation challenges, anxiety, communication difficulties and supervision requirements can make consistency of support particularly important. Reforms should ensure that participants with the highest support needs are not unintentionally disadvantaged in accessing skilled, experienced support workers. Continuity of care is not only beneficial for participants and families, it can also reduce disruption, workforce turnover and the need for more intensive interventions.
FAST Australia supports sustainable reform and recognises the need for greater consistency across the Scheme. We also support appropriate safeguards, transparency and review mechanisms to ensure participants and families can seek independent review when planning decisions may significantly affect safety, participation or wellbeing.
However, reforms must recognise that conditions such as Angelman syndrome are severe, lifelong and highly predictable. Diagnosis should continue to inform planning, while safety and supervision should be recognised alongside observable function. Support systems must also continue to enable meaningful participation throughout adulthood.
A sustainable NDIS should continue to support those for whom the Scheme was originally designed: Australians living with permanent, significant and complex disability whose support needs are lifelong, substantial and well understood.
The Foundation for Angelman Syndrome Therapeutics Australia Limited ABN 33 141 728 038