Submission 2628
Committee Secretary
Senate Standing Committees on Community Affairs
PO Box 6100
Parliament House
Canberra ACT 2600
29 May 2026
[CONFIDENTIAL]
Dear Committee Secretary,
Re: Submission to the Senate Community Affairs Legislation Committee
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
My name is . I am caring for someone with Parkinson’s. I am writing to endorse Parkinson’s Australia’s submission recommendations based on my experience with an incurable, chronic, progressive neurological condition in a person under the age of 65, and how the current NDIS system and the proposed reforms affect daily life.
I am writing to endorse Parkinson’s Australia’s key criteria in their submission.
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I need early support. Do not remove the early intervention pathway for people with young onset Parkinson’s. Waiting until further decline will increase risk and cost.
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The condition changes through the day. Assessments must reflect this. One short assessment cannot capture how Parkinson’s affects a person.
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Assessors must understand Parkinson’s. They must know about: o movement and non-motor symptoms o medication timing and “on-off” periods o how symptoms fluctuate
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All symptoms must count. The system must include: o motor and non-motor symptoms
Submission 2628
o cognitive changes o fatigue, depression, apathy and anxiety
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Functional capacity changes across the day and must be assessed: o at different times o across medication cycles o using clinical reports where needed
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Falls risk depends on the environment. Assessments must include the home, not just a clinical setting.
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Specialist reports must be accepted. A neurologist understands the condition better than a one-off assessor. A functional capacity assessment by an OT captures the complexity and comprehensive nature of needs.
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There should not be a need to prove decline after a serious event. Automatic reassessment should apply after: o falls with injury o hospital admission o major medication changes o dementia diagnosis o loss of swallowing safety
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The 90-day decision period is too long. Parkinson’s does not stabilise; it only worsens over time. Faster decisions (21 days) are safer.
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A support coordinator or nominated representative must be able to request reassessment if the participant cannot.
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Priority access must be written into law.
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Access should be based on how fast function declines, not how close someone is to death.
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People with advanced Parkinson’s or atypical Parkinsonism must receive fast assessment and planning.
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If a plan included equipment before, it should not disappear without clear notice.
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If safety equipment is removed, there must be a right to review.
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Leasing is not suitable for this condition. Parkinson’s is permanent and progressive.
Submission 2628
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Long-term equipment and home changes should be funded to buy, not lease.
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Informal supports may not be sustainable. The system must assess: o full care load o carer impacts, including reduced financial situation, fatigue, burnout o long-term viability
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Budgets must match the real cost of supports.
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If the budget is too low, there must be a clear right to challenge it.
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Funding rules must not allow plans that cannot meet needs. Decisions and pricing
Any changes to supports must:
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notify participants directly
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explain the impact
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allow the right to appeal Pricing decisions must:
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stay open to parliamentary review
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be informed by clinical experts in neurological conditions Parkinson’s is complex, progressive, and variable. The system must reflect this in how it assesses, funds, and supports people living with the condition. These changes will protect safety, independence, and long-term outcomes.
Thank you for considering my endorsement. I hope it contributes to the committee’s understanding of the realities of living with these issues and supports the development of meaningful and practical reforms for Australians with incurable, chronic neurological conditions on the NDIS.
Don’t hesitate to get in touch with me if further information is required.
Yours sincerely,