NDIS REFORMS ADVOCACY UPDATE
Of the 5000 participants on NDIS, 3000 have gained entry through the Early Intervention pathway (S25). We discussed 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 treatment.
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 concerns
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, Physiotherapy, 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.
What we discussed
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 care 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.
