National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2113
Submission in Response to the Second Reading Speech – National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I write as the parent of a child living with a permanent genetic disability, and I wish to express serious concerns regarding the direction and implementation of the proposed amendments to the National Disability Insurance Scheme (NDIS). My son was born with XYY Chromosome Syndrome, also known as Jacobs Syndrome. This is a permanent genetic condition with lifelong impacts on development, behaviour, learning, emotional regulation and functional capacity. There is no cure and no treatment available to reverse or “fix” the condition. The only supports available are therapies and interventions designed to assist him in functioning and participating in daily life. Specialists, including genetic experts, provided detailed medical evidence confirming that my son’s condition is both significant and permanent. The NDIS accepted this evidence, and my son was granted access to funding and supports. In March 2024, we received correspondence from the NDIS confirming continued recognition that my son met the criteria for a permanent and significant disability. However, in August 2024, following a reassessment conducted through a review of previous records, the NDIS abruptly determined that my son no longer met the criteria and cancelled his plan entirely. I sought a review of this decision. During discussions with the reviewing NDIS officer, it became evident that she lacked even a basic understanding of my son’s diagnosis. When questioned, she was unable to adequately explain the decision-making process or answer simple questions about the nature of XYY Syndrome itself. During an online meeting, it was suggested that therapies could somehow “fix” my son’s condition. This fundamentally misunderstands the tnature of genetic disabilities. The second reading speech states that the bill seeks to
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2113
“When someone defrauds the NDIS they’re taking resources that should be spent on a participant who genuinely needs this funding.”