Two people are looking at sheets of paper covered in graphs and data. We can only see their arms and hands.

The National Disability Data Asset Council held its first meeting on February 19, in an Australian first.

The Council comprises three disability community members, three data experts, three Commonwealth representatives and three state and territory representatives, and will give all levels of government insights into how people with disability live their lives, the barriers they face and what needs to be improved. 

The disability community members and data experts are: 

·       Catherine McAlpine, CEO of Inclusion Australia and Co-Chair of the Council. McAlpine is the carer and mother of a young man with an intellectual disability.

·       Dr Scott Avery, Professor of Indigenous Disability at the School of Public Health, University of Technology Sydney. He is an Aboriginal scholar from the Worimi people and is profoundly deaf.

·       Professor Bruce Bonyhady, Executive Chair and Director, Melbourne Disability Institute, inaugural Chair of the National Disability Insurance Agency. Professor Bonyhady is also the father of two sons with disability.

·       Giancarlo de Vera, Senior Manager of Policy and Advocacy at People with Disability Australia. Giancarlo is a LGBTQIA+ culturally and linguistically diverse person with invisible disability and is a carer of other people with disability.

·       Rosemary Kayess, Disability Discrimination Commissioner, Senior Lecturer with the Faculty of Law at the University of New South Wales and Vice Chair of the United Nations Committee on the Rights of Persons with Disabilities.

·       Dr Julian Trollor, Chair of Intellectual Disability Mental Health and Head of Department of Developmental Disability, Neuropsychiatry, Discipline of Psychiatry and Mental Health, University of New South Wales Sydney.

The Australian Government Department of Social Services is partnering with the Australian Bureau of Statistics and the Australian Institute of Health and Welfare to develop and deliver the technical aspects of the National Disability Data Asset, which will bring together de-identified information from different government agencies about Australians with disability and without disability.

The first sets of analysis from the National Disability Data Asset will be available later this year, with the Asset expected to be fully operational by end of 2025.

NDIS Minister Bill Shorten, said the NDIS Review recommended all governments should agree to invest in actions to improve disability data quality and sharing. 

“The National Disability Data Asset will help do that by linking de-identified NDIS data with other Commonwealth and state and territory data for the first time,” he explained. 

“As we reform the NDIS, this will give richer insights into how NDIS supports interact with supports and services in other systems outside the Scheme and how we can improve those connection points.”

The Council will ensure the disability data asset is used ethically and for its intended purpose, to bring together de-identified information from different government agencies about Australians with disability. 

Social Services Minister, Amanda Rishworth said the meeting is another step towards a more inclusive Australia. 

“The Council will assist governments to manage research priorities and support our work to create responsive policies and programs that best meet key targets agreed to in Australia’s Disability Strategy,” she said. 

“More than one in six Australians live with disability but we haven’t had accurate, consistent national data across all states and territories on what they need and where people are falling through the cracks. By working collaboratively with the disability community, data experts and state and territory governments we will now be able to derive more evidence-based ways to create a more accessible and inclusive Australia.” 

The Federal Government has provided $68.3 million in funding for analysis, research and delivery of the Asset and all states and territories have now signed bilateral schedules to enable the transfer of data. 

Three panels will be established to report to the Council providing advice on specific priority areas including the ethical use of data and future improvements, and will comprise of people with disability, experts in disability research, and people with knowledge of human rights or ethics. 

Members of the public are invited to express their interest in joining a panel and sharing their insights with the Council. Expressions of interest to join the public panels close on 29 February 2024 and can be made on the DSS Engage website

For more information on the National Disability Data Asset, visit the National Disability Data Asset website.