National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2437
Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600
31 May 2026
Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Dear Committee Members,
My name is . I am writing as a mother whose daily life is shaped, in every meaningful way, by the needs of a child living with Angelman Syndrome — and I ask this Committee to consider carefully what the proposed amendments would mean for children like her, and for the families who love and care for them.
The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 gives me cause for serious concern. Not as an abstract matter of policy, but as something that touches the very practical realities of how my daughter lives, grows, and participates in the world.
Community participation is not incidental – it is foundational When my daughter steps outside our home, attends an activity, or engages with the people and places around her, something important is happening. She is learning to regulate. She is building connection. She is, in the truest sense, developing as a person. She is, in the truest sense, developing as a person – though none of this is possible without a support person by her side
The Bill’s proposed powers to reduce funding for community participation treat these supports as though they sit at the edges of what the NDIS exists to provide. In our experience, they sit at the very centre. To reduce them is not a modest administrative adjustment – it is a meaningful diminishment of my daughter’s quality of life, and a further weight placed on families who are already carrying a great deal.
Withdrawal of support has consequences that cannot be undone Angelman Syndrome is a complex neurological condition affecting communication, mobility, safety awareness, behaviour regulation, and independence. My daughter cannot compensate when support is reduced. The skills she has worked so hard to develop –
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2437
through years of consistent therapy and engagement – are genuinely vulnerable to regression without ongoing input.
I want the Committee to understand that this is not a matter of inconvenience. Reduced supervision creates real safety risks for a child who lacks the awareness to protect herself. Reduced therapy means functional decline that, once it occurs, is extraordinarily difficult to reverse. A scheme that responds only once a family has reached crisis point is not truly providing support – it is simply managing the aftermath of harm that could have been prevented.
Complex conditions require a connected understanding of need The proposed narrowing of what qualifies as directly related to a participant’s disability concerns me deeply, because Angelman Syndrome does not present in neat, separable categories. My daughter’s communication needs, her behavioural supports, her sensory regulation, her capacity-building therapies are interwoven. They inform and depend upon one another.
A definition of reasonable and necessary that attempts to isolate individual supports from the broader picture of a child’s functioning will, in practice, exclude things that are genuinely essential. The complexity of her condition is not an edge case to be managed around – it is precisely what the NDIS was designed to accommodate.
Families need the ability to respond as circumstances change Children with Angelman Syndrome do not follow predictable developmental trajectories. Needs shift as children grow, begin school, encounter new environments, or experience changes in health. The proposed restrictions on unscheduled reassessments would leave families unable to respond to these changes in any timely way – locked into plans that may no longer reflect what their child actually requires.
Responsiveness within the system is not a concession to be minimised. For families navigating lifelong and complex disability, it is simply what good support looks like.
Standardised assessments cannot fully capture rare and complex conditions I hold serious reservations about the use of standardised functional capacity assessments as the basis for determining support levels for children with conditions like Angelman Syndrome. Clinical settings tend to elicit a version of my daughter that does not reflect her day-to-day reality. The gap between how she presents in a structured assessment and what she needs to live safely and well can be substantial.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2437
Families should not be required to repeatedly demonstrate the severity of a permanent neurological condition. That burden sits uneasily alongside any genuine commitment to dignity.
I recognise that the long-term sustainability of the NDIS is a legitimate concern, and I do not suggest that reform is without merit. But the measures proposed here carry real risks for children with profound disabilities who have no alternative source of support. The Scheme was founded on a commitment to inclusion, independence, and a genuine opportunity to participate in Australian life. I ask the Committee to weigh these reforms with that founding intention in mind, and to consider, at each point, where the consequences of getting it wrong will fall.
Yours sincerely,
Sydney, NSW