People living with young onset, Parkinson’s and Atypical Parkinsonism and their care partners know better than anyone how policy changes affect daily life, from access to essential supports to the ability to live safely and maintain independence. Lived experience is powerful when shared; it helps shape a fairer and more responsive system. Whether you choose to sign a petition, write to your MP, contribute to a consultation, or take another form of action, every voice and every story strengthens our community’s call for change. Advocacy needs to ensure that reforms to the NDIS and other support systems genuinely reflect the needs of people with chronic, progressive neurological conditions.

People with Parkinson’s and Atypical Parkinsonism are being negatively affected by several major NDIS reforms, including:

  • Cuts to social & community participation budgets (from $31,000 to $26,000 over two years)
  • Shift to standardised functional assessments, replacing diagnosis‑based eligibility from 2028
  • Restrictions on unscheduled plan reviews and delays to new framework plans until 2027
  • Concerns about the I‑CAN v6 assessment tool failing to capture fluctuating neurological symptoms
  • Short consultation periods and inaccessible documentation that exclude people with disability from meaningful participation.

Submit Your Story to Parkinson’s Australia

Parkinson’s Australia uses lived experience stories in its federal submissions, including:

  • NDIS Amendments Submission (May 2026)
  • NDIS Rules Submission (March 2026)
  • NDIS Draft Supports List (Aug 2024)

Stories from people with Parkinson’s help strengthen national advocacy. Email feedback on how NDIS changes are impacting you here.

Write to Your Federal MP or Senator

Senators and Members individually decide their preferred web-based contact method. Go here to find out more.

What People with Parkinson’s Can Say in Their Advocacy

Based on Parkinson’s Australia’s evidence, key messages include:

  • Functional assessments must account for fluctuating symptoms (“on/off periods”).
  • Assessment tools must reflect over 40 motor and non‑motor symptoms.
  • Cuts to social participation funding will harm wellbeing and independence.
  • Consultation processes must be accessible (Easy Read, Auslan, translations).

People with Disability Australia NDIS Petitions

More than 12,000 people have signed PWDA’s Change.org petition following the announcement that there will be further cuts to the NDIS:
This shows the level of public concern, and we will present it to our supporters in Parliament during Budget week.
Now PWDA needs your support for our Parliamentary e-petition:
This petition becomes part of the official parliamentary record and is formally tabled in Parliament.
Why two petitions?
Because they do two different and equally important things.
  • One builds public pressure.
  • One creates a permanent record.
Together, they send a stronger message to the government.
Please sign and share both. original facebook link

Quick NDIS Complaints Summary

Knowing who can answer your question or complaint can be helpful. The two orgs are:

If you contact the wrong place, they will redirect you — there is no wrong door.

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