The National Disability Data Asset Council

The Australian, state and territory governments are working together to create the National Disability Data Asset. The disability data asset will bring together de-identified information from different government agencies about people with disability. This will help us to better understand the experiences of people with disability.

The disability data asset will help governments to make decisions about their programs and services to better support people with disability, their carers and families.

The disability data asset went through 2 years of development and testing called the Pilot. A disability advisory council guided the Pilot. They gave advice on creating the new Council. Their advice included the rules the Council must follow. These rules are around how the Council should consult with the disability community on the uses of the disability data asset.

What will the Council’s role be?

The role of the Council will be to make sure the disability data asset is used correctly. It will also make sure the data asset is only used for the things that governments and the disability community have agreed to.

The Council will give disability ministers recommendations on:

• how findings could be used to improve outcomes for people with disability
• new areas for national research
• updates to the disability data asset, such as data improvement.

The Council will:

• manage the development of research priorities
• make sure the data is being used safely
• build trust with the disability community
• support the community to use the asset
• report to the public on what the disability data asset is being used for and how it will help the disability community
• share achievements of the project
• report on any areas of concern
• encourage the community to give feedback.

Who will be on the Council?

The Council will have 12 members:

• 6 from government
• 3 non-government disability experts
• 3 from the disability community.

Council members will include:

• people with lived experience of disability – including carers and family members
• people with specialist knowledge and experience in disability policy, data and management
• people from a wide range of cultures, backgrounds, genders and locations.

How will we choose the Council members?

Government representatives will nominate the government and expert Council members. Disability representatives will nominate the disability community Council members. The representatives who will nominate the disability community Council members will be from:

• the Disability Representative Organisations Forum
• Pilot Disability Advisory Council
• National Disability Research Partnership Working Group.

Disability ministers will approve the Council members.

Who will lead the Council?

The Council will have two leaders chosen from the 12 Council members. One leader will be from government and one will be a disability community member.

How will the Council report on progress and be responsible?

The Council will give:

• updates on work, achievements and any issues
• recommendations to ministers about the disability data asset.

There will also be audits that will include:

• a list of what the asset has been used for
• any issues
• impacts of research findings
• community opinions on how valuable the disability data asset is.

The Council will produce a report each year including findings and recommendations from any audits.

You can find more information about the National Disability Data Asset at https://ndda.gov.au or by emailing NDDA@dss.gov.au.