The Joint Standing Committee on the National Disability Insurance Scheme (NDIS) (the Committee) is conducting a new inquiry into the current Scheme implementation and forecasting for the NDIS. The Committee will focus on how the NDIS is implemented and funded, and what supports are or should be available for people with disability in addition to the NDIS.
The Committee has set two closing dates for submissions:
29 October 2021: any submissions received before this deadline will be considered if the Committee releases an interim report in late 2021.
28 February 2022: any submissions received before this deadline will be considered in the Committee’s final report.
Note: submissions received by 29 October may also be considered in the final report.
Click here to read the Terms of Reference.
Rare Voices Australia (RVA) has contacted the Committee Secretary who reassured RVA that stakeholders are welcome to lodge a submission ahead of the deadline that is most convenient for them. Interim reports generally contain few, if any recommendations and are often quite short. Stakeholders are welcome to lodge a short submission this year before organising a more detailed supplementary submission next year.
RVA’s advocacy
RVA will lodge a submission to meet both deadlines and we encourage those living with a rare disease who are NDIS participants, or whose community members are NDIS participants, to lodge a submission. This will ensure that the voices of people living with a rare disease, as well as their families and carers, are heard.
RVA’s 29 October 2021 submission will align with the National Strategic Action Plan for Rare Diseases (the Action Plan), which was informed by an extensive multi-stakeholder consultation process, as well as the Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases (Disability & Rare Disease) report. In developing the report, consultations with all stakeholders in the rare disease sector were held and a nationwide survey of people living with a rare disease and their carers was conducted. The Disability & Rare Disease report also informed the Action Plan.
We will engage with our RVA Partner organisations in December 2021 to inform RVA’s more detailed submission for the 28 February 2022 deadline.
RVA Partner organisations that are looking to lodge a submission ahead of the 29 October 2021 deadline are encouraged to reach out to RVA for mentorship support: [email protected]
Why this consultation is important for people living with a rare disease
There is clear cross over between many rare diseases and disability. Aspects of the National Strategic Action Plan for Rare Diseases (the Action Plan) specifically address the NDIS and the arbitrary and unhelpful line that is often drawn between medical issues and disability. In particular, the Action Plan highlights the need for coordinated and integrated care (see Appendix 1).
Since 2012, RVA has consistently highlighted the impact of disability on the lives of people living with a rare disease. In 2019, RVA commissioned the McKell Institute to deliver the report, Disability & Rare Disease.
Making a submission
Submissions should include the name of the inquiry: Inquiry into the future of the NDIS.
The Committee is seeking written submissions in electronic form submitted online or sent by email to [email protected] as an attached Adobe PDF or MS Word document. Alternatively, written submissions may be sent to:
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
