To the Editor: We commend Smith‐Merry and colleagues for their excellent article highlighting important equity issues in the National Disability Insurance Scheme (NDIS) and their call for scheme redesign to address these issues.1
However, they overlook an essential measure for achieving NDIS equity: involving people with lived experience of disability in co‐designing a more equitable NDIS. This approach aligns with disability advocacy calls for “nothing about us without us”,2 and is in opposition to the excess of policies designed for people with disability without their participation, partnership or co‐design. We believe that inclusion of people with lived experience of disability in the design of a more equitable NDIS is an essential addition to an otherwise excellent article.
Recent NDIS governance changes have increased the representation of people with lived experience, with a total of five board members, including the chair, now people with disability. Combining this with a lived experience‐based approach to developing the marketplace of supports is crucial,3 as such a system provides genuine insight into the quality and suitability of services.
Exact models for the inclusion of lived experience need to be explored, with elements of co‐design, co‐production and human‐centred design all likely to be relevant.4 Meltzer and colleagues3 outline three key principles for integrating lived experience into NDIS market stewardship, providing a foundation for integrating lived experience into NDIS redesign: (i) invite meaningful and flexible participation from people with disability; (ii) make scheme design information accessible to people with disability; and (iii) amplify the voices of people with disability.
The focus should be on inviting meaningful, flexible and accessible participation from a wide range of people with disability to ensure broad representation. Incorporating lived experience evidence will enable scheme redesign to better account for outcomes in the lives of NDIS participants, ultimately promoting greater equity, choice and control for people with disability.
In conclusion, it is imperative to include individuals with lived experience of disability in the redesign of a more equitable NDIS. We believe this crucial aspect of scheme redesign should be included alongside the other important issues and solutions raised by Smith‐Merry and colleagues.
- 1. Smith‐Merry J, Gilroy J, Watharow A. The NDIS at ten years: designing an equitable scheme for the next decade. Med J Aust 2023; 218: 291‐294. https://www.mja.com.au/journal/2023/218/7/ndis‐ten‐years‐designing‐equitable‐scheme‐next‐decade
- 2. Charlton J. Nothing about us without us: disability oppression and empowerment. Oakland, CA: University of California Press, 1998.
- 3. Meltzer A, Dickinson H, Malbon E, Carey G. Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets. Evid Policy 2021; 17: 335–347.
- 4. Blomkamp E. The promise of co‐design for public policy. Aust J Public Admin 2018; 77: 729‐743.