National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2095
Dear Committee Members,
I am a parent of a 34 year old son who has a severe intellectual and complex support needs. He is currently living in Specialist Disability Accommodation (SDA).
I am deeply concerned about proposed changes to the NDIS, particularly any reduction to community participation supports.
Community participation is not optional for my son. It is essential to his emotional wellbeing, mental health and quality of life. Without regular support to access the community, engage in activities and maintain connections with friends his wellbeing deteriorates significantly. When isolated he withdraws completely and will often go back to bed during the day.
As ageing parents, now both 64, we live with constant worry about what will happen to our son when we are no longer here to advocate for him.
Over many years we have spent enormous time, energy and emotional resources fighting for the supports he now has. We have been required to provide repeated submissions, assessments and expensive professional reports to justify his needs to the NDIA. Ironically, this process has consumed his funding and taxpayers’ money that could have been far better spent on actual support services. Because funding is continually directed into reports, reassessment and administrative evidence, there has been less funding available for meaningful face to face therapy and support. This has reduced access to speech therapy and behaviour support, the very supports that help maintain his stability, communication and quality of life.
Families like ours who have children with very high support needs are exhausted. We are not asking for luxury, we are asking for security, dignity, continuity of care and recognition that people with severe disabilities require lifelong support and human connection.
I am concerned that reforms focussed primarily on cost containment and sustainability my unintentionally create great isolation, deterioration in mental wellbeing and long-term crisis for vulnerable participants.
I ask the committee to carefully consider:
Protecting community participation supports Reducing unnecessary reassessments and duplicated reports Ensure funding is directed toward real support and not administration Recognise the immense pressure carried by ageing parents and carers Maintaining long-term certainty for people with severe and permanent disability
The NDIS has allowed my son to live with greater dignity and stability. Removing or reducing these support risks undoing years of progress and places enormous fear into families who already carry lifelong caring responsibilities.
Thank you for considering my submission.
(Mother, NDIS Nominee and Legal Guardian)