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

Submission 2031

Date: 30 May 2026

Dear Committee Secretary,

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I make this submission as a family member, carer, NDIS nominee and enduring power of attorney for my brother , and as the sister of two brothers with Huntington’s Disease. My existing carer statement explains that I have supported since 2019 and remain actively involved in his care.

Huntington’s Disease is a progressive neurological condition that worsens over time and affects movement, thinking and mood, and public health information also notes difficulties with speech and swallowing as the disease progresses. My family’s lived experience reflects this. In ’s case, support records and allied health material refer to declining health, reduced communication, high falls risk, reliance on mobility aids, and moderate to severe dysphagia.

For people with Huntington’s Disease, supports are not optional extras. They are essential to safety, dignity and survival. In our experience, any reduction, delay or removal of support increases the risk of falls, choking, injury, hospital admission and faster deterioration. My own advocacy material states that without appropriate support, ’s condition may deteriorate more rapidly, and NDIS-related correspondence records concern that if funding ran out he could become a social admission to hospital.

I am deeply concerned about the very short consultation period for this bill. The template submission I have used notes that the consultation period is two weeks and recommends a minimum of 30 days, while the Parliament of Australia inquiry page confirms that the bill was referred on 14 May 2026 and that extensions for submissions were authorised until Monday, 1 June 2026. Families like mine need adequate time to understand complex changes and explain how they would affect people with progressive disability.

I am also concerned that the bill leaves major decisions about eligibility and funding to ministerial instruments rather than primary legislation. The template states that the bill would allow Ministers to change who gets NDIS support and how much funding people receive without returning to Parliament, and the Parliament of Australia summary lists changes relating to functional capacity, plan reassessments, support determinations and ministerial power to reduce funding for specified groups of supports. For families like mine, this creates dangerous uncertainty because support reductions can have immediate and serious consequences.

I strongly oppose any change that reduces review rights for existing participants. The template states that the bill restricts reassessments, removes review rights for automatic plan renewals and makes some funding reductions unreviewable. This is especially harmful where disability is progressive and needs change over time. In ’s case, records show repeated efforts to secure changed supports as his condition worsened, including requests for 24/7 1:1 support, high-intensity support due to dysphagia, and urgent requests for essential mobility equipment because of safety concerns and frequent falls.

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

Submission 2031

I am also concerned about proposals that tighten eligibility by requiring people to exhaust treatment options and by moving away from a whole-of-person assessment. The template states that the bill would require people to exhaust treatment options before eligibility and replace whole-of-person consideration with a single eligible impairment focus. That approach is not appropriate for Huntington’s Disease, which public health sources describe as progressive and without cure. Support should be based on actual functional need and real-world safety, not on a narrow or theoretical view of treatment.

The proposed approach to functional assessment is also concerning. The template raises concerns that the I-CAN tool may not adequately identify needs, especially where disability is complex, fluctuating or not well captured at a single point in time. Huntington’s Disease affects physical movement, cognition, behaviour, communication and swallowing together. In ’s case, existing records refer to chorea, weakness, balance problems, cognitive difficulties, impulsivity, reduced speech clarity and dysphagia. A narrow or one-off assessment risks underestimating real support needs and causing harm.

My family knows what inadequate support looks like in practice. It looks like urgent requests for equipment not being actioned while falls continue. It looks like support coordinators warning that funding shortfalls may force hospital admission. It looks like years of advocacy to secure recognition of needs that are plainly increasing because of a progressive neurological condition.

My two brothers have Huntington’s Disease. Any reduction, delay or removal of their supports is not a minor administrative matter — it could accelerate their decline, increase preventable harm, and shorten their lives. I urge the Committee to recommend substantial amendment of this bill so that no current participant is exposed to harm through reduced supports, reduced rights of review or narrower eligibility rules.

Yours faithfully,

Sent from my Galaxy