Submission 690
Committee Secretary
Senate Standing Committees on Community Affairs
PO Box 6100
Parliament House
Canberra ACT 2600
29 May 2026
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 work alongside many people living with Parkinson’s Disease in my capacity as a Support Coordinator, and I am writing to express my support for Parkinson’s Australia’s submission. My endorsement is grounded in professional experience of supporting people navigating the NDIS with an incurable, chronic, and progressive neurological condition — and in witnessing firsthand how the proposed reforms stand to affect their daily lives.
The following reflects the key concerns and recommendations I am asking the Committee to take seriously.
Early intervention must be protected Removing the early intervention pathway for people with young onset Parkinson’s would be a serious mistake. Delaying support until a person’s condition has deteriorated further does not save money — it increases both risk and long-term cost. Early access is not a luxury; it is a clinical and practical necessity.
Assessments must reflect how Parkinson’s actually presents Parkinson’s is not a static condition. Symptoms shift throughout the day depending on medication cycles, fatigue, and other factors. A single, brief assessment cannot come close to capturing the full picture. Assessors must have genuine knowledge of both the motor and non-motor dimensions of the disease, including the significance of “on-off” periods and the timing of medication. Any assessment framework that fails to account for this will produce inaccurate and potentially harmful outcomes.
Submission 690
All symptoms must be recognised The full range of how Parkinson’s affects a person must be captured — not just movement, but cognitive changes, fatigue, depression, apathy, and anxiety. Functional capacity must be assessed across different times of day and across medication cycles, drawing on clinical reports where appropriate. Falls risk cannot be properly evaluated in a clinical setting alone; assessments must include a person’s home environment.
Specialist knowledge must be given appropriate weight A neurologist who has followed a person’s condition over years understands it far better than a one-off assessor ever could. Reports from treating specialists and functional capacity assessments conducted by occupational therapists must be accepted as meaningful evidence. Their clinical expertise should inform decisions, not be set aside in favour of standardised tick-box processes.
Reassessment must be triggered automatically after significant health events No one should have to fight to prove that their condition has changed following a serious fall with injury, a hospital admission, a major medication change, a dementia diagnosis, or a loss of swallowing safety. Automatic reassessment should be built into the system as a matter of course following events such as these.
Decision timeframes must be shorter The current 90-day decision period is far too long for a condition that does not pause or stabilise. A 21-day timeframe is far more appropriate and would better protect the safety and wellbeing of people whose needs can change quickly. Additionally, where a person is unable to request a reassessment themselves, their support coordinator or nominated representative must be legally empowered to do so on their behalf.
Priority access must be legislated Access decisions should be based on how rapidly a person’s function is declining — not on how close they are to end of life. People living with advanced Parkinson’s or atypical Parkinsonism require fast-tracked assessment and planning. This must be written into law, not left to discretion.
Equipment and home modifications must not be arbitrarily removed If a person’s plan has previously included safety equipment, that equipment must not simply disappear from a new plan without clear notice and a right of review. Leasing
Submission 690
is not an appropriate model for a permanent and progressive condition. Long-term equipment and home modifications should be funded for purchase, not treated as temporary arrangements.
Informal and carer supports must be properly assessed Family and carer networks are not an inexhaustible resource. The system must assess the full care load being carried, including the financial, physical, and emotional toll on carers, as well as the long-term sustainability of those arrangements. Plans that assume ongoing informal support without examining its viability are building on unstable ground.
Budgets must be adequate and challengeable A plan that cannot actually meet a person’s needs should not be approved. Where a budget falls short, there must be a clear and accessible pathway to challenge it. Funding rules must ensure that plans are genuinely capable of supporting the people they are meant to serve.
Changes to supports and pricing must be transparent and reviewable Any modification to a person’s supports must come with direct notification, a clear explanation of the impact, and a meaningful right of appeal. Pricing decisions must remain open to parliamentary oversight and must be informed by clinicians with expertise in neurological conditions.
Parkinson’s is a complex, variable, and relentlessly progressive condition. Having supported many people living with this disease through the NDIS, I have seen directly how the current framework — and the reforms as proposed — can fall short of what participants genuinely need. The changes outlined above are not unreasonable asks; they are the baseline conditions required to protect the safety, dignity, and independence of Australians living with this disease.
Thank you for your consideration of this submission. I hope it adds to the Committee’s understanding of what life with a chronic neurological condition looks like in practice, and that it contributes to reforms that are meaningful rather than merely administrative.
Submission 690
Please do not hesitate to contact me should you require any further information.
Yours sincerely,
Consent Statement
I consent to this submission being published with my name and contact details withheld.