Rare disease appropriate National Disability Insurance Scheme (NDIS) supports and planning are an ongoing focus of Rare Voices Australia’s (RVA) advocacy. RVA has been working alongside several RVA Partner organisations (rare disease groups) that have experience and expertise with the NDIS to address systemic issues and gaps for people living with a rare disease who are also NDIS applicants or participants.
Consultations with the National Disability Insurance Agency
In 2021 and 2022, representatives from rare disease groups, including RVA Partners Angelman Syndrome Association Australia; Batten Disease Support and Research Association Australia; Fragile X Association Australia; Huntington’s NSW ACT; Mito Foundation; Muscular Dystrophy Queensland; and SCN2A Australia met with representatives of the National Disability Insurance Agency (NDIA) alongside RVA. The purpose of these consultations was to highlight how the complex, changing and multi-faceted needs of people living with a rare disease could be better addressed.
In 2019, RVA collaborated with the rare disease sector on the paper, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. This paper collated evidence about the unmet needs of Australians living with a rare disease that cause disability. The paper also informed recommendations related to rare disease, disability and the NDIS in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). The Action Plan is the first nationally coordinated effort to address rare disease in Australia.
RVA has since engaged in multiple discussions at various levels within the NDIA. In 2022, the NDIA recognised the value of this ongoing conversation and identified RVA as a key peak body stakeholder.
Why is this important?
This has enabled discussions about policy and the systemic changes required for the NDIS to better respond to the needs of people living with a rare disease.
Four immediate key priorities:
In the first meeting for 2023, the NDIA, group of representatives and RVA agreed to progress:
- Ensuring decisions about rare disease applicants and candidates are informed by appropriate rare disease expertise. This expertise would cater for the nuances and unique challenges rare diseases present to those engaging with the NDIS. RVA has been invited to propose a model that will facilitate ongoing access to this expertise.
- Education for agency staff around the unique needs of applicants and participants living with a rare disease. This is designed to support responses and language that are sensitive to individuals and families diagnosed with a progressive, life-limiting, episodic and undiagnosed/rare disease where future needs are uncertain. RVA will be seeking input from our RVA Partner organisations regarding this.
- A discussion on ways to navigate the complex interactions between the health, education, social support, employment and disability systems. The aim is to ensure that gaps and fragmentation are addressed to better meet the needs of people living with a rare disease that cause disability.
- Ways to improve data collection regarding acceptance and participation of people living with a rare disease in the NDIS. Data collection of this nature will increase the visibility of participants in the NDIS living with a rare disease; provide evidence around the current experience of NDIS participants who have a rare disease; assist in identifying best practice; and recognise and address systemic gaps.
RVA would like to thank and acknowledge our RVA Partner organisations that have collaborated with us to progress these important issues. This work is yet another demonstration of the resourcefulness and effectiveness of rare disease advocates in our community.
While RVA is aware that there are other important issues to address regarding the NDIS and people living with a rare disease, the four areas highlighted above have been prioritised as they are the foundation for other necessary improvements. RVA will continue to update stakeholders as these discussions progress and will reach out to RVA Partner organisations shortly to seek their input as needed.
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