National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 159

Submission to the Government on the Proposed NDIS Changes

From: Stephanie, mother of Otis (a child with cerebral palsy) Location: Regional Victoria, Australia

I am writing to share my concerns as a parent of a child with cerebral palsy and to express how deeply the proposed changes to the NDIS Act will affect our family, our community, and countless others in similar situations.

What the NDIS means for us right now for our family, the NDIS is not just funding — it is what keeps Otis well, helps him participate, and supports him to learn, connect, and grow. Otis is only just entering primary school, and we are still fighting to build the social and community supports he needs to feel included and safe. The NDIS is what makes that possible for us.

These proposed changes have not been clearly explained to us, and we do not yet understand the full impact they will have on our family. That lack of clarity is frightening, because even small reductions in supports can have serious consequences for a child like Otis and for everyone who supports him. How these changes impact our family, friends, carers, and community.

The NDIS supports not just Otis, but everyone around him — our family, friends, carers, and the wider community who help him live a fuller life. If social and community participation supports are reduced or removed, Otis would be less able to connect with others, participate in school activities, and build the relationships he needs to thrive. We are only just building these supports now, and any reduction would be a major setback.

Our main concern is the huge impact on Otis’ health. If capacity-building supports were reduced or removed, the impact on Otis’ health would be enormous. Capacity-building supports help him develop skills, stay strong, manage his cerebral palsy, and participate in daily life. Without them, his health, development, and overall wellbeing would be at serious risk, and for what?

Concerns about the proposed definition of “permanence”

One of the major changes in this legislation relates to how the NDIA defines “permanence” in relation to disability. Cerebral palsy is a lifelong disability. Changing how permanence is defined creates fear, uncertainty, and unnecessary barriers for families like ours who need certainty and stability, not more obstacles.

My request

I am asking the government to:

• Clearly explain these changes in plain language that families can understand
• Ensure that capacity-building, social, and community supports are not reduced or removed for children with permanent disabilities like cerebral palsy
• Keep the definition of “permanence” stable and fair for families who already face enough challenges
• Listen to the lived experience of families who rely on the NDIS to keep our children safe and healthy.

The NDIS is essential for Otis. Removing or reducing supports would not just affect him — it would affect our whole family system, our carers, our friends, and our community.

Thank you for reading this submission. Stephanie Clark-Webb Mother of Otis Regional Victoria, Australia