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 nature of genetic disabilities.

The second reading speech states that the bill seeks to “return the NDIS to its original intent, providing lifetime supports for Australians with permanent and significant disability.” My son’s condition clearly falls within that category. Yet despite having a lifelong genetic disorder supported by specialist evidence, he was removed from the scheme.

The speech also states that the government intends to clarify “permanence” and require individuals to undertake “all appropriate treatments” before a condition is considered permanent. This approach is deeply concerning for families like mine because it fails to distinguish between treatable conditions and irreversible genetic disorders. There are no treatments available that can remove or cure my son’s diagnosis. Therapy only assists with support needs; it does not eliminate the disability.

Further, the speech repeatedly references fraud, integrity risks and cost growth within the NDIS. While I support genuine efforts to combat fraud and misconduct by providers, I am concerned that honest families are being unfairly caught in the crossfire. Rather than focusing solely on strengthening oversight and accountability of providers and intermediaries, it appears the system is increasingly targeting participants and families who are already vulnerable and exhausted.

The Minister stated:

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.”

I agree entirely. However, families like mine, caring for children with medically recognised permanent disabilities, are the very people who genuinely need this support. Removing access from legitimate participants does not solve fraud within the provider market.

The speech also states that the reforms aim to create a “more consistent and robust approach” to eligibility assessments. My experience demonstrates the opposite. In my son’s case:

• Specialist evidence concurring permanence was accepted;

• The NDIS reaffirmed his eligibility in March 2024;

• Months later, without any improvement in his condition, the decision was reversed;

• The reviewing officer appeared unfamiliar with the diagnosis and unable to properly explain the reasoning.

This inconsistency has caused enormous stress and uncertainty for our family.

The government states these reforms are about “securing the NDIS for future generations.” That objective should not come at the expense of children with lifelong disabilities being removed from essential supports due to administrative inconsistency, inadequate understanding of rare conditions, or cost-cutting measures disguised as reform.

I urge the government and Parliament to ensure:

1. Rare genetic disorders are properly understood and assessed by appropriately qualified personnel;

2. Permanent disabilities without curative treatment are not unfairly excluded under revised permanence tests;

3. Families are provided transparent reasoning and procedural fairness during reviews;

4. Fraud prevention measures focus on providers and organised misconduct, rather than penalising genuine participants;

5. Specialist medical evidence is given appropriate weight in decision-making.

The NDIS was created to support Australians living with permanent and significant disability. Families like mine should not have to continually fight to prove the existence and permanence of medically recognised genetic conditions simply because they are rare or poorly understood by decision-makers.

Thank you for considering this submission.