National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 884
Submission to the Senate Inquiry into the NDIS Future Generations Bill 2026
To the Senate Inquiry into the NDIS Future Generations Bill 2026,
I am a neurodivergent parent and full-time carer currently navigating the NDIS application process for my 7-year-old daughter, who has significant functional support needs.
The NDIS matters to me because it is often the difference between families surviving and collapsing under the weight of caregiving, disability support coordination, school access difficulties, emotional regulation support, sensory needs, medical appointments and daily supervision demands.
I am deeply concerned about the direction of recent reforms and the increasing uncertainty for families trying to access support for children with complex functional impairments. I worry that children who can sometimes ‘look okay’ when regulated, masked, supported or accommodated will be overlooked despite requiring extremely high levels of supervision, co-regulation and daily support behind closed doors.
I am also concerned that families are being expected to repeatedly prove disability through exhausting administrative processes while already overwhelmed. The invisible labour involved in caregiving, coordination, advocacy and emotional regulation is enormous and often underestimated by systems.
My daughter’s needs impact every part of daily life - school access, sensory regulation, community participation, emotional regulation, safety awareness, sleep, toileting and medical care. These needs do not disappear simply because she has moments of functioning, connection or joy.
Please ensure the NDIS continues to recognise:
- functional impairment, not just diagnosis labels
- fluctuating and ‘can when regulated’ presentations
- caregiver sustainability and burnout risk
- the importance of early supports that prevent long-term crisis
- and the reality that many families are already doing everything possible before seeking help.
Families should not have to reach breaking point before support is considered serious enough.
Thank you for considering my submission.