Rare Voices Australia (RVA) welcomes the opportunity to provide input from a rare disease perspective into changes being made to the National Disability Insurance Scheme (NDIS). RVA will be a lodging a submission into:
- The National Disability and Insurance Agency’s (NDIA) consultation into access and eligibility policy with independent assessments.
- The Joint Standing Committee on the NDIS Parliamentary Inquiry into independent assessments.
RVA has heard many stories of the difficulties those impacted by rare disease have had in terms of eligibility, access and timely response.
In developing our submission for the Parliamentary Inquiry, RVA is seeking input from our RVA Partner organisations. We would like to hear your views and recommendations for the NDIS, as well as your specific experiences. RVA is hosting two 90-minute webinars on Wednesday 3 February:
Webinar 1: 2pm to 3:30pm (AEDT)
Webinar 2: 8pm to 9:30pm (AEDT)
The content for each webinar will be the same. Choose the session that bests suits you.
The sessions are designed to be collaborative and interactive discussions that can inform the development of RVA’s submission to the Parliamentary Inquiry, as well as your own organisation’s potential submission. We will discuss:
- Terms of reference for the Parliamentary Inquiry and guidelines for the NDIA’s access and eligibility policy with independent assessments consultation.
- Barriers that rare disease families experience in accessing NDIS funding.
- Ideas for the fairest and most equitable ways to assess eligibility and access requirements from a rare disease perspective.
- The National Strategic Action Plan for Rare Diseases and how its content relates to access to care and services, including the need for a co-ordinated and integrated approach.
- Data sources such as The McKell Institute report, Disability and Rare Disease: Towards Person Centred for Australians with Rare Diseases, the Tune Review of the NDIS Act 2013 and international models.
The NDIA’s access and eligibility policy consultation closes on 23 February and details can be found here.
The closing date for the Parliamentary Inquiry is 31 March and the terms of reference can be found here.
To register for this webinar please email RVA’s Stakeholder Engagement and Education Officer, Louise Healy, noting which session you’d like to attend: firstname.lastname@example.org
If your rare disease organisation/group is not an RVA Partner and you would like to attend the webinar, you can apply to become an RVA Partner. Click here for more information.