Protect the Early Intervention pathway to the NDIS for people with Parkinson’s
Of the 5,000 participants on NDIS with Parkinson’s, 3,000 have gained entry through the Early Intervention pathway (S25). We maintain that this access is in keeping with the original intent of the scheme because people who have been diagnosed with Parkinson’s have a permanent and significant disability – a degenerative, neurological condition with no known cure and limited treatments that responds well to allied health therapies in order to slow decline.
Current consultations
- New framework planning & NDIS supports (closes 13 Oct)
What you can do
Check back and you will see PDF buttons for a template for you to get to your local MPs and Senators. You can find their contact details on the APH website.
Write to your Federal MP and the Senators for your state and ask them to support the continuation of the Early Intervention pathway for people with Parkinson’s.
- Download the template letter
- Personalise it with your experience.
- Find your MP and Senators at https://www.aph.gov.au/Senators_and_Members/Contacting_Senators_and_Members
- Send your letter and ask them to raise this issue with the Australian Government.
What we’ve already done…
You will see buttons below of our past submissions to NDIS consultations.
Protect the Early Intervention pathway to the NDIS for people with Parkinson’s
Last week, Parkinson’s Australia Board member, Jen Harkness, who lives with Young Onset Parkinson’s and Olivia Nassaris, CEO, met with NDIS Minister, Jenny McAllister, to discuss the most critical issue for our community in relation to the legislative changes – the NDIS access and eligibility criteria for people with Young Onset Parkinson’s and the loss of the Early Intervention pathway.
Parkinson’s Australia recognises that new access and eligibility criteria, namely in the form of a functional capacity assessment, is the remit of the Technical Advisory Committee. PAL recommends that expert patient-advisory peak organisations also be included in the membership of the Technical Advisory Committee as, in its current form, it is very academic in nature. We would welcome the opportunity to be involved in this committee, and we will also communicate this interest directly to Minister Mark Butler.
Our primary concern is that future changes to access and eligibility will prevent someone with Parkinson’s entering the NDIS and therefore not being able to access evidence-based interventions such as Occupational Therapy, Physio, Speech pathology, Exercise Physiology. Research from around the world has shown that these therapies slow symptom progression, improve symptoms, slow the trajectory of the condition.
We discussed how these therapies must be prescribed and applied to the individual as Parkinsons’ presentation in each person is unique and unpredictable. These interventions prevent premature work separation, keep carers in the workforce, reduce mental health conditions, reduce hospital entry and ensure that they live well with Parkinson’s, active in the economy and reduce the burden on our health system.
PAL highlighted the importance of the Neurodegenerative, Palliative and Rare diseases Advisory Group (NPRAG) and their role as a specialist advisory group to the agency. we discussed the Support Needs Assessment and how patient advocacy organisations can assist the NDIA to recruit appropriate people to participate in testing. We also shared the positive outcome, that the NDIA and NPRAG will work together for testing with 60 participants from our cohorts to ensure that it is appropriate for neuro/palliative/rare condition participants and make recommendations using data from this testing.
The NDIS Minister invited us to continue the conversation, and we will make ourselves available to ensure the needs of our community are represented, particularly to preserve the vital early intervention pathway to NDIS for people living with Young Onset Parkinson’s.
Campaign updates
PANC27
We are proud to welcome all members of the Australian Parkinson’s community to Sydney in May 2027 for the country’s only national Parkinson’s conference. Visit the conference home page to learn all about what’s in store and plan your stay in Sydney. Tickets available now!
