NDIA Accountability Project

Endorsement of Parkinson's Australia’s criteria regarding early support and assessment for people with Parkinson's

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Submission 1549 - Supplementary Submission

Gabriella Mirabito

Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600

27 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 Gabriella Mirabito. I am a carer and family member of a person living with Parkinson’s disease who is an NDIS participant under the age of 65. I am writing to endorse Parkinson’s Australia’s submission recommendations based on our family’s lived experience of an incurable, chronic, progressive neurological condition, and how the current NDIS system and the proposed reforms affect the person I care for in their daily life, safety, independence, therapy access, family participation, and ability to remain engaged in work and community life.

I am writing to endorse Parkinson’s Australia’s key criteria in their submission.

  • The person I care for needs early support. Do not remove the early intervention pathway for people with young onset Parkinson’s. Waiting until they decline further will increase risk and cost.

The condition of the person I care for changes throughout the day. Assessments must reflect this. One short assessment cannot capture how Parkinson’s affects them.

  • Assessors must understand Parkinson’s. They must know about: - movement and non-motor symptoms - medication timing and “on-off” periods - how symptoms fluctuate

  • All symptoms of the person I care for must count. The system must include:

Submission 1549 - Supplementary Submission

  • motor and non-motor symptoms

  • cognitive changes

  • fatigue, depression, apathy and anxiety

  • The function of the person I care for changes across the day. Functional capacity must be assessed:

    • at different times
    • across medication cycles
    • using clinical reports where needed

  • Falls risk depends on the person’s environment. Assessments must include the home of the person I care for, not just a clinical setting.

  • Specialist reports must be accepted. The neurologist and treating clinicians of the person I care for understand the condition better than a one-off assessor. A functional capacity assessment by an occupational therapist captures the complexity and comprehensive nature of their needs.

  • The person I care for should not have to prove decline after a serious event. Automatic reassessment should apply after:

    • falls with injury
    • hospital admission
    • major medication changes
    • dementia diagnosis
    • loss of swallowing safety

  • The 90-day decision period is too long. Parkinson’s does not stabilise; it only worsens over time. Faster decisions (21 days) are safer.

  • A support coordinator or nominated representative must be able to request reassessment if the person I care for cannot.

Priority access must be written into law.

  • Access should be based on how fast the person’s function declines, not how close they are to death.
  • People with advanced Parkinson’s or atypical Parkinsonism must receive fast assessment and planning.

If the plan of the person I care for included equipment before, it should not disappear without clear notice.

  • If safety equipment is removed, the person I care for must have a right to review.
  • Leasing is not suitable for this condition. Parkinson’s is permanent and progressive.
  • Long-term equipment and home changes should be funded to buy, not lease.

Informal supports may not be sustainable. The system must assess:

Submission 1549 - Supplementary Submission

  • full care load
  • carer impacts, including reduced financial situation, fatigue, burnout
  • long-term viability

The budget must match the real cost of supports.

  • If the budget is too low, the person I care for must have a clear right to challenge it.
  • Funding rules must not allow plans that cannot meet the needs of the person I care for.

Decisions and pricing

Any changes to supports must:

  • notify the participant or their representative directly
  • explain the impact on the person affected
  • allow a right of appeal

Pricing decisions must:

  • stay open to parliamentary review
  • 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 the person I care for. These changes will protect their 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,

Gabriella Mirabito

Consent Statement

I consent to this letter/submission being published with my contact details withheld and my name included.