The Neurodegenerative, Palliative Care and Rare Diseases Advisory Group (NPR) met online on 23 May 2024.
The Chairperson, Aaron Verlin, General Manager, Co-design and Engagement, National Disability Insurance Agency (NDIA), welcomed everyone to the meeting and highlighted the importance of this group in supporting the NDIA to hear the voices, perspectives and gain a better understanding of the unique challenges NDIS participants with neurodegenerative conditions, in palliative care and have rare diseases face. /p>
Focus of the meeting
The meeting covered:
- Terms of Reference.
- Key issues from members.
- Opportunities.
Terms of Reference
NPR discussed the draft Terms of Reference (ToR) and discussed:
- Strengthening an agreed understanding of "strategic advice".
- The group's expertise as a significant touch point to work through relevant NDIS Review recommendations once Government releases their official response.
- That current challenges that often span and reflect a person's range of supports, that the NDIA can work with this group to understand gaps and interconnections in service systems.
The group adopted the ToR, including a determination to rename the group, from Neurodegenerative Disorders and Palliative Care Working Group to Neurodegenerative, Palliative Care and Rare Diseases Advisory Group (NPR).
Current Key Issues
Members discussed the following key issues:
- Proposed changes to assessments rather than a diagnosis is positive.
