National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 780
Submission Regarding the National Disability Insurance
Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
To Whom It May Concern,
I am writing to express my concerns regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and the potential impact it may have on my daughter and other children living with significant lifelong disabilities.
My daughter is six years old and lives with Rett Syndrome. Rett Syndrome is a rare and complex neurological disorder that primarily affects girls. It is caused by a genetic mutation and results in severe impairments affecting communication, mobility, coordination, motor skills, independence, and daily functioning. Children with Rett Syndrome often require lifelong, intensive support across all areas of life.
Although my daughter faces significant challenges, she has made important progress and, most importantly, has not experienced regression due to the consistency of her current supports and therapies. She currently attends therapy twice per week, which is essential in maintaining her physical abilities, communication skills, and overall quality of life.
The therapies she receives are not optional or excessive — they are medically necessary supports that help prevent deterioration. Without ongoing intervention, children with Rett Syndrome are at risk of losing skills, experiencing physical decline, reduced mobility, worsening communication difficulties, and decreased independence.
The proposed changes to the NDIS create significant fear and uncertainty for families like ours. Any reduction, delay, or limitation in supports could have devastating consequences for my daughter’s future. Early and consistent intervention is critical for children with profound disabilities, and disruptions to therapy services could result in irreversible regression.
Families caring for children with complex disabilities already carry enormous emotional, physical, and financial pressures. The NDIS has provided vital support that allows my daughter access to therapies and equipment she needs to participate in daily life and reach her potential.
I strongly urge the Government to ensure that any amendments to the NDIS protect vulnerable participants with permanent and complex disabilities, including children with Rett Syndrome. Funding decisions must remain individualised, evidence-based, and centred on maintaining functional capacity and quality of life.
Children like my daughter deserve the opportunity to continue accessing the supports that prevent regression and allow them to live with dignity, safety, and inclusion.
Thank you for considering my submission.