Rare Voices Australia (RVA) has continued to actively advocate for systemic improvements to the National Disability Insurance Scheme (NDIS), to ensure the program can better respond to the unique needs and challenges of people living with a disability caused by rare disease. Through this sustained and ongoing advocacy, RVA was invited to participate in an interactive virtual roundtable meeting with the National Disability Insurance Agency (NDIA) and RVA Partner organisations on 1 December. The NDIA limited the number of places available at the workshop to ensure it remained interactive.
The following RVA Partners joined RVA at the roundtable:
- Angelman Support Association Australia
- Battens Disease Support and Research Association
- Fragile X Association Australia
- Huntington’s NSW and ACT
- Mito Foundation
- Muscular Dystrophy Foundation Australian
The two-hour session provided a platform for the NDIA to hear directly from the rare disease community, so the NDIA can be better informed about the functional impacts and support requirements of people with rare diseases who seek to access NDIS services. The roundtable covered three broad areas of the NDIS for discussion, which had been identified as key pain points for the rare disease community:
- Access Pathway
- Assistive Technology
These focus areas align with Implementation step 126.96.36.199 of the National Strategic Action Plan for Rare Diseases, which prioritises the need to fast track access to the NDIS and ensure participants are able to secure the appropriate support services to meet the evolving needs of people with rare diseases and their families.
For RVA and attending RVA Partners, the session enabled a robust discussion with the administrators of the NDIS about the unique challenges in eligibility, access and planning experienced by rare disease applicants and participants. While RVA Partners represented a broad range of rare diseases, insights into their communities’ lived experiences with the NDIS clearly demonstrated the extensive policy issues that currently exist within the system, that impact all people with rare diseases. To select participants who could represent a broad range of rare diseases, RVA sought Expressions of Interest (EOI) from RVA Partner organisation leaders. RVA then considered:
- The EOI lodged
- Broad representation of the rare disease community
- Diverse range of experiences with the NDIS
- Demonstrated alignment with RVA’s advocacy approach
- Willingness and ability to represent the broader rare disease community
Although this roundtable session was the first-of-its-kind to be held between the rare disease sector and the NDIA, RVA was able to raise the need for creating a fit-for-purpose mechanism to facilitate ongoing dialogue between the two groups; and we expect similar sessions may be held during 2022. RVA thanks the attending RVA Partner organisations for their participation at this session and their commitment to improving the NDIS experience for people living with rare diseases. We look forward to keeping all stakeholders updated on the outcomes of this NDIA roundtable and communicating with RVA Partner organisations regarding potential future opportunities to contribute to this systemic advocacy.