Submission 2627
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 a person living 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 my 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 I decline further will increase risk and cost.
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My condition changes through the day. Assessments must reflect this. One short assessment cannot capture how Parkinson’s affects me.
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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 my symptoms must count. The system must include: o motor and non-motor symptoms
Submission 2627
o cognitive changes o fatigue, depression, apathy and anxiety
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My function changes across the day. Functional capacity 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 my environment. Assessments must include my home, not just a clinical setting.
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Specialist reports must be accepted. My neurologist understands my condition better than a one-off assessor. A functional capacity assessment by an OT captures the complexity and comprehensive nature of my needs.
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I should not have 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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My support coordinator or nominated representative must be able to request reassessment if I cannot.
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Priority access must be written into law.
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Access should be based on how fast my function declines, not how close I am 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 my plan included equipment before, it should not disappear without clear notice.
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If safety equipment is removed, I must have a right to review.
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Leasing is not suitable for my condition. Parkinson’s is permanent and progressive.
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Long-term equipment and home changes should be funded to buy, not lease.
Submission 2627
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My 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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My budget must match the real cost of supports.
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If the budget is too low, I must have a clear right to challenge it.
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Funding rules must not allow plans that cannot meet my needs. Decisions and pricing
Any changes to supports must:
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notify me directly
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explain the impact on me
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allow me 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 me. These changes will protect my 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,
Submission 2627
29 May 2026
Committee Secretary
Senate Standing Committees on Community Affairs
PO Box 6100
Parliament House
Canberra ACT 2600
Dear Committee Secretary,
Re: NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
My name is and I am living with Parkinson’s disease. I was diagnosed at the age
of 58. Like many Australians, I never expected to be facing a progressive neurological disease at this
stage of my life.
Parkinson’s is not simply an old person’s disease. It affects people of all ages and impacts far more
than movement. It can affect balance, speech, cognition, sleep, mental health, energy levels and the
ability to carry out everyday activities. Most importantly, Parkinson’s has no cure. It is a progressive
condition that worsens over time.
I am writing to share my experience and ask the Senate to carefully consider how these proposed
changes may affect Australians living with progressive neurological conditions such as Parkinson’s.
Living with Parkinson’s means living with uncertainty. I do not know exactly what my future will look like,
but I do know that my condition will continue to progress and that my support needs will increase as
time goes on.
Some days are better than others. Fatigue, stiffness, reduced mobility and other symptoms can make
simple tasks far more difficult than people realise. What many people do not understand is that
Parkinson’s symptoms can change significantly throughout the day, depending on medication cycles,
stress and fatigue. A person may appear capable at one moment and struggle greatly a short time later.
My goal is simple. I want to remain independent for as long as possible. I want to continue making my
own decisions, contributing to my community and maintaining my dignity and quality of life. Access to
Submission 2627
timely support, therapies, equipment and services can make a significant difference in helping people
like me achieve those goals.
My partner, , is also living this journey alongside me. As my condition progresses, more
responsibility will inevitably fall on her. Parkinson’s affects not only the person diagnosed but also their
loved ones, carers and families. Any reforms to the NDIS should recognise the enormous role that
carers play and the pressures they face emotionally, physically and financially.
I am concerned that changes to the NDIS could make it more difficult for people living with Parkinson’s
to access support before reaching crisis point. Early intervention and timely support help maintain
independence, reduce falls and hospitalisations, and improve long-term outcomes. Delaying support
until a person’s condition has significantly deteriorated benefits no one.
Parkinson’s is a complex condition that cannot always be accurately measured through a single
assessment. Specialist medical advice, allied health reports and functional assessments must continue
to play a central role in determining support needs. The people who know and treat us over time have
the clearest understanding of how this disease affects our daily lives.
I support Parkinson’s Australia’s recommendations because they reflect the realities of living with a
progressive neurological condition. They would help ensure that people receive the support they need
when they need it, rather than after a significant decline has already occurred.
I am not asking for special treatment. I am simply asking for a system that understands Parkinson’s,
recognises its progressive nature and responds fairly and compassionately.
The decisions made through this legislation will directly affect my future. They will influence my ability to
remain independent, stay safe in my home and continue participating in the life I value. I ask the
Committee to consider the lived experiences of people with Parkinson’s and ensure that the NDIS
continues to provide meaningful support for Australians living with incurable, progressive neurological
conditions.
Thank you for taking the time to consider my submission and the experiences of people like me.
I consent to this submission being published by the Committee.
Yours sincerely,