The National Disability Data Asset is inclusively co-governed through the Council. This means that governments and the wider disability community share responsibility and decision-making. The Council has 12 members and reports to Disability Ministers.
The Council’s role is to make sure the National Disability Data Asset is used in the right way.
The Council also provides annual reports to Disability Ministers. The first annual report covers July 2024 to June 2025. The report is about:
- uses and outcomes of the National Disability Data Asset
- whether the rules and principles in the Charter are being followed
- how data is kept safe and what happens if data is used in the wrong way.
Between July 2024 and June 2025, the Council held 6 meetings and 2 workshops. The workshops focused on community engagement, and the long-term plan for the future.
Panels
The Council set up 3 advisory panels. The work of the Panels has helped the Council make key decisions.
The 3 panels were:
- Disability Indicators Panel (Indicators Panel)
- Disability Data Development Scoping Panel (Scoping Panel)
- Disability-informed Ethical Oversight Panel (Ethical Oversight Panel).
More information on the panels and their work is on the advisory panels page of the website.
The Indicators Panel supported the development of the first set of disability indicators. These are now known as disability flags. The Panel provided advice on how researchers should explain the flags. It also gave feedback on the plan for improving them.
The Scoping Panel wrote a report for the Council. The report was about gaps in data and knowledge that future advisory panels could look into. The Council agreed to create 2 new advisory panels based on the Scoping Panel’s advice. These are:
- Children and young people with disability
- Employment for people with disability.
The Ethical Oversight Panel reviews all project requests from the point of view of people with disability. The Panel only recommends projects that are not likely to cause harm to people with disability. The Panel also gives researchers advice to help make their research more inclusive. The Panel also wrote a guide to help researchers make sure their work is ethical, useful and inclusive.
Community engagement
The Council and advisory panels include members of the disability community. The Council had a community engagement workshop in July 2024. They used this to make a plan to connect with people with disability about:
- what the National Disability Data Asset is
- why it is important.
The Council wanted to ask people with disability and the wider disability community what they wanted to know from the data. We are waiting to do this until there is more data available.
In 2024-25 the government launched a new website and brand. The website is now more accessible and inclusive.
The Council was also part of Australia’s side event at the United Nations Conference of States Parties (COSP). The panel talked about supporting research led by people with disability, by:
- using good and ethical data with community input
- creating policies and systems that include everyone.
More information on the COSP side event is available on the website.
Uses and outcomes of the National Disability Data Asset
The National Disability Data Asset aims to deliver three main benefits. These are:
- building stronger evidence to improve laws, policies, and services for people with disability
- improving data quality and quantity, and access to data about people with disability
- building better systems for sharing data between governments.
These benefits are being delivered by:
- the development of disability flags
- Australia’s Disability Strategy Outcomes Framework reporting
- data sharing and linkage.
Disability Flags
The National Disability Data Asset includes disability flags. Disability flags are community supported ways of measuring disability. The Council agreed to the first set of flags in July 2024. The Council agreed to a plan to improve the flags, so they better include people with disability. The next disability flags being developed will focus on 3 disability types:
- autism
- intellectual disability
- Deafblind.
The flags help report on Australia’s Disability Strategy Outcomes Framework.
The Council approved the work of an analysis team. The Council also has a goal of 1 in 5 projects being led or supported by the disability community. These two things and the disability flags are expected to help create useful benefits and insights in the future.
How the data is kept safe
Keeping data safe and private is very important. In 2023, privacy experts checked how the National Disability Data Asset keeps people’s information safe. This check is called a Privacy Impact Assessment (PIA). In April 2025, a report about the PIA was published on the website. The report explains how the team followed the 6 recommendations from the PIA. More information about keeping data safe is available on the website.
Project requests
Researchers could apply for access to the data from 19 December 2024. In 2024-25, there were 7 project requests:
- 5 from Australian universities
- 2 from the Australian Government.
There were no requests from organisations that represent people with disability. No projects were approved or refused at the end of 2024-25.
Looking ahead
Governments are trying to make it easier to share data for linkage and make it available for researchers to use.
In 2025-26, the Council plans to:
- improve the disability flags
- publish the inclusive research guide, and the Council’s vision
- promote inclusive research with governments and universities
- run an independent check of how well the Charter is being followed
- work with the disability community on the Charter’s benchmark
- create a framework for assessing requests to use NDDA data.