National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1342
To: The Senate Community Affairs Legislation Committee
Re: Submission on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
From:
Date: 27/5/26
Dear Committee Members,
My name is . I am a care partner for my husband, who lives with young onset Parkinson’s and is currently supported by the NDIS.
I have reviewed the Justice and Equity Centre explainer on the NDIS Amendment. The analysis shows that the proposed amendments will narrow access to supports, raise legal thresholds, and shift responsibility from the Scheme to individuals and their families.
I’ve also read the Parkinson’s Australia submission and fully endorse their recommendations.
- Replacing diagnosis-based eligibility from 2028, you will be assessed on your ability to do activities without any assistance, assistive technology, or home modifications. This fails to capture our real-life needs and the context of our home and work environments. It also disallows access for early intervention pathways for those with young onset to the therapies and support that would keep them better for longer, maintaining independence and reducing carer burnout (e.g., family responsibilities, staying in the workforce, participating in the community). It will fail to capture the complex, day-to- day fluctuations of Parkinson’s.
- The Bill reverses the legal position established in Eastham by requiring a direct link between a specific impairment and each support. This removes the whole-of-person approach. Parkinson’s is complex and permanent. It has no cure and does not present in isolated parts. It is documented as a whole body disorder with significant impacts from motor symptoms, fatigue, pain, cognitive change, autonomic dysfunction, sleep and mental health issues. In practice, this legal test will exclude supports that respond to the combined impact of the condition. I am also concerned that this will not allow for early intervention to keep my husband and friends with young onset Parkinson’s well for longer, so they can continue to participate in the workforce and their communities, so that they can care for and interact with their children before their condition progresses, and they decline more quickly due to lack of support.
- The Bill restricts reassessments to ‘significant and ongoing’ changes. The JEC Explainer makes clear that temporary or situational changes may not qualify. Parkinson’s is a fluctuating condition. Function can change quickly, and care arrangements can shift
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1342
without warning. A system that cannot respond to short-term deterioration or carer unavailability will fail at critical moments. 4. The Bill elevates informal supports within the reasonable and necessary framework. As outlined by the JEC, formal supports will only be funded where risks cannot be managed through unpaid care or lower-cost options. This assumes that families can absorb increased care demands from a progressive and incurable disease. It shifts cost and risk onto care partners without recognising physical limits, financial or cumulative strain. 5. The Bill introduces binding support determinations, reversing the effect of McGarrigle. This allows the Minister to cap or exclude supports regardless of individual need. A participant may meet all criteria and still be denied necessary supports due to a system- level rule. This undermines the principle of individualised funding. 6. The Bill enables standardised functional assessments. These tools create risk for people with fluctuating and progressive conditions. Parkinson’s function varies across the day, often depending on medication timing. A single assessment point will not reflect actual need and will likely result in underestimation of support. 7. The Bill allows plans to be suspended or revoked if a participant is uncontactable for 90 days. The safeguards outlined in the JEC Explainer are limited. People with Parkinson’s may experience hospitalisation, apathy, overwhelm or cognitive decline that interrupts communication. Loss of support in these circumstances is not a reasonable outcome. 8. The Sutherland decision clarified limits around expecting participants to rely on other service systems. This Bill risks reintroducing those expectations through stricter eligibility and informal support requirements. 9. Access test consideration of permanence imposes very broad requirements of undergoing a wide range of treatments which may not be available to you due to distance or costs; have a personal preference or cultural reasons not to undergo significant and invasive procedures; or may not qualify for. The Davis ruling on permanence is also relevant. Parkinson’s is degenerative and lifelong. Any tightening of permanence criteria creates uncertainty for people with clearly progressive, incurable, degenerative conditions.
These amendments represent a shift in the legal structure of the NDIS. They narrow eligibility, constrain funding, and increase reliance on unpaid care. For people living with Parkinson’s, the likely result is reduced access, delayed support, and increased risk to their own safety.
I ask the Committee to reconsider these changes and preserve a framework that responds to actual functional need.
Yours sincerely,