National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2389
Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600
My name is , and I am the father of a young girl living with Angelman Syndrome.
I am deeply alarmed about the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and the impact these changes may have on children like my daughter and on families like ours.
My daughter relies on the NDIS not only for therapies and support services, but also for opportunities to participate in the community, experience joy, develop skills, and live a meaningful life. These are not luxuries — they are essential parts of her wellbeing, development, communication, and quality of life.
The proposed reforms appear to place a strong emphasis on reducing costs and tightening funding, but from the perspective of families living with profound disability every day, many of these changes risk reducing the supports that make life possible and enjoyable for our children.
I am particularly troubled about the proposed changes relating to:
- Reductions to social and community participation supports
The Bill introduces powers that would allow funding reductions across categories of supports, including community participation budgets. This raises serious concerns that supports enabling disabled children to access outings, recreational activities, social engagement, and community inclusion may be reduced in future plans.
For my daughter, community access is critical. Activities outside the home are not simply “extra” activities — they are essential for her emotional wellbeing, social connection, sensory regulation, learning, and inclusion in society. Reducing access to these supports would significantly reduce her quality of life and further isolate families already carrying enormous caring responsibilities.
- Risk of harm caused by reduced supervision and therapies
One of my greatest concerns is the potential for real harm to occur if supports, therapies, or supervision hours are reduced under these reforms.
My daughter lives with Angelman Syndrome, a complex neurological condition that affects communication, mobility, safety awareness, behaviour regulation, and independence. She requires consistent supervision and ongoing therapeutic support to remain safe, engaged, and able to participate in daily life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2389
Without appropriate supports, children like my daughter are at increased risk of:
• Injury due to reduced safety awareness and impaired judgement • Social isolation and withdrawal from the community • Significant regression in communication, mobility, and daily living skills • Increased behavioural distress, anxiety, and emotional dysregulation • Reduced physical health and wellbeing due to loss of therapeutic intervention • Increased pressure and burnout on parents and carers
Therapies are not optional extras for children with profound disabilities. They are preventative supports that help maintain function, reduce long-term deterioration, and improve quality of life.
Likewise, supervision supports are not simply “babysitting.” They are essential safeguards that allow children with significant disabilities to safely access the community, participate in activities, and experience the same opportunities other children enjoy.
I fear the proposed reforms create a system where only crisis-level needs will receive adequate support. By the time a child has already regressed, suffered injury, or experienced serious decline, the harm has already occurred.
The NDIS should focus on early intervention, prevention, safety, participation, and long-term wellbeing — not merely reacting once families reach breaking point.
- Narrowing what supports are considered directly related to disability
The proposed changes appear to tighten the definition of what the NDIS will fund, limiting supports to those arising “directly” from a participant’s impairment.
This deeply concerns me because many supports required by children with complex disabilities are interconnected. Therapies, behavioural supports, community participation, communication support, and capacity-building activities all work together to improve functioning and quality of life.
Angelman Syndrome is a lifelong neurological condition that affects communication, mobility, safety awareness, sleep, and independence. A narrow interpretation of “reasonable and necessary” supports risks excluding therapies and supports that are essential for maintaining my daughter’s progress and preventing regression.
- Harder access to reassessments and plan changes
The proposed reforms would tighten the criteria for unscheduled reassessments and reviews. Families may only be able to request reviews in cases of major, unexpected and ongoing changes.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2389
Children with complex disabilities do not develop in straight lines. Needs change regularly as children grow, enter school, experience developmental changes, or require new therapies and equipment. Families need flexibility within the system to respond to changing circumstances quickly and appropriately.
Limiting access to reassessments may leave families without the supports they urgently need for long periods of time.
- Functional assessments and reassessment of existing participants
The Bill proposes future reassessments based on standardised functional capacity assessments.
I am concerned that standardised assessments may fail to capture the complexity of rare conditions like Angelman Syndrome and the day-to-day realities faced by families. Many children present differently in structured assessments compared to their real-world functioning and support needs.
Families should not have to repeatedly prove the permanence and severity of lifelong disabilities.
I understand the importance of protecting the long-term sustainability of the NDIS and addressing fraud within the system. However, these reforms must not come at the expense of vulnerable children and people with profound disabilities who genuinely rely on these supports to participate in everyday life.
The NDIS was created to provide people with disability with dignity, inclusion, opportunity, and independence. I ask the Committee to carefully consider the unintended consequences of these proposed reforms and ensure children living with lifelong disabilities do not lose access to the therapies, supports, supervision, and community participation that allow them to thrive safely and with dignity.
Thank you for considering my submission.
Yours sincerely,
Sydney, NSW