The Pilot Disability Advisory Council (Council) for the National Disability Data Asset (NDDA) met on the 4 June and 9 July 2020 and discussed a range of topics related to the pilot phase of the NDDA.
The pilot phase of the NDDA commenced in April this year, following agreement by the Australian Data and Digital Council in September 2019, and endorsement by the Disability Reform Council in October 2019. The Commonwealth is providing up to 15 million dollars to cover the costs of the pilot phase. The pilot will consider funding options for the permanent asset.
The Council discussed the transformational potential of this project for the 4.4 million Australians living with disability. The NDDA will join together data about the experiences of people with disability, so they can be better supported to live their lives. This data is currently held by different governments and agencies across Australia and is not well linked together. The NDDA will give a more complete picture of how people with disability are living their lives, including in the areas of education, jobs, health, safety and disability supports.
The pilot is trialling how to link data through five example cases. The pilot is also exploring how people with disability and government user groups can access data insights.
The Council noted that the wishes and needs of people with disability should be considered in the design of the NDDA. They also noted the need to build community awareness, support and confidence in the NDDA. Members discussed options for providing input and specific expertise to different areas of the pilot.
The Council discussed communications and engagement with the disability community, including the importance of engaging with less-often-reached people and people with complex support needs. Providing accountability back to people with disability was agreed to be vital for the NDDA’s long-term success.
The Council will engage people with disability, their carers, family members and the broader disability community throughout the pilot. The Council will provide guidance to the NDDA project team and give advice on how to design and operate the asset.
Membership of Disability Advisory Council
The Council is chaired by Dr Ben Gauntlett, Disability Discrimination Commissioner at the Australian Human Rights Commission. The following members of the Council took part in the meetings:
- Dr Scott Avery, Senior Lecturer, School of Social Sciences, Western Sydney University
- Professor Bruce Bonyhady, Professor of Enterprise (Disability Economics), Executive Director & Chair, Melbourne Disability Institute, previous Chairman of the NDIS Board
- Belinda Drew, CEO, Community Services Industry Australia, Chair, Social Enterprise Finance Australia
- Damian Griffis, CEO, First Peoples Disability Network (Australia) Ltd
- Professor Anne Kavanagh, Chair of Disability and Health, Head of the Disability and Health Unit in the Centre for Health Equity, Co-Director, NHMRC Centre of Research Excellence in Disability and Health, University of Melbourne
- Professor Gwynnyth Llewellyn, Director of Family and Disability Studies, University of Sydney, Head, WHO Collaborating Centre for Strengthening Rehabilitation Capacity in Health Systems, Co-Director, NHMRC Centre of Research Excellence in Disability and Health, Disability and Inequity Stream Leader, Centre for Disability Research and Policy
- Dr Steven McEachern, Director, Australian Data Archive, Australian National University
- Kevin Stone, CEO, Victorian Advocacy League for Individuals with Disability (VALID), Chair, Inclusion Australia (National Council on Intellectual Disability)
- Professor Julian Trollor, Head of Development Disability Department, University of New South Wales
- Leah Van Poppel, CEO, Women with Disabilities Victoria
- John Walsh AM, NDIS Board of Directors