National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1772
Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Friday, 29 May 2026
To the Committee,
We are making this submission together as a disabled young man and me his mother.
We are deeply concerned about the proposed changes to the NDIS Act and the devastating impact it may have on people with disability and their families.
Before the NDIS, our family slipped through the cracks. Despite my son having multiple complex disabilities and high support needs, we struggled for years without adequate services or meaningful support. As a single parent, I carried the responsibility largely alone, often without respite, guidance, or the supports necessary to keep our family functioning safely and sustainably.
The NDIS changed that.
For the first time, my son was able to access supports that recognised his needs and allowed him to participate more safely and meaningfully in daily life and the community.
My son has an acquired brain injury (ABI), is a wheelchair user, profoundly hearing impaired and uses bilateral cochlear implants, he has central sleep apnoea and sleeps with a BiPAP ventilator, hydrocephalus with a VP shunt, epilepsy requiring four different medications to manage seizures, moderate intellectual disability, and is unable to read or write. He also has a misaligned jaw which requires mealtime assistance, he uses continence aids and requires significant personal care support in everyday life.
My son was just two years old when our lives changed forever. Today, at 22, he is a young man living with profound and complex disabilities yet still trying every day to build a life filled with dignity, meaning, connection, and purpose — like any other young person his age. Behind every diagnosis is a human being who wants to belong, to be included, and to have the opportunity to live a life that matters.
These are lifelong disabilities and complex medical needs. The suggestion that people may need to continue attempting every possible treatment before being considered “permanent” enough for support is deeply distressing and disconnected from reality.
Many treatments are inaccessible due to cost, exhaustion, risk, or limited likelihood of success. Disabled people should not be forced into endless cycles of proving, trialling, or justifying their disability in order to access essential supports.
We are also deeply concerned about the proposed reduction or removal of social, community, and capacity-building supports.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1772
These supports are not optional extras. They are what prevent isolation, burnout, family breakdown, hospitalisation, and crisis. They help disabled people participate in their communities, maintain dignity, develop independence, and experience quality of life.
Without these supports, families like ours will once again be pushed to the edge.
We are also concerned that these proposed changes may contravene Australia’s obligations under the Convention on the Rights of Persons with Disabilities (CRPD), which recognises the rights of people with disability to live independently, participate fully in society, access supports without discrimination, and maintain dignity and autonomy.
Policies that make it harder for people with profound and permanent disabilities to access support risk undermining these commitments.
We do not believe these changes have been explained clearly or transparently enough to the disability community. Many people are frightened about losing supports they rely on for daily survival, safety, and participation in society.
We urge the Committee to listen to disabled people and families with lived experience.
The NDIS should be protected and strengthened — not narrowed in ways that place vulnerable people at greater risk.
Thank you for considering our submission.
Sincerely,
(mum) and (son)