The Australian Government is working with state and territory governments to create the National Disability Data (NDDA). The NDDA hopes to improve outcomes for people with disability by providing a more complete picture of their life experiences, and their interaction with government and the wider disability sector.
The NDDA aims to collect and link data from different government agencies into a centralised data asset. With a better understanding of the experiences of people living with disability, government agencies can improve services.
As part of the project, there was a pilot program that focused on how agencies can best share, link and access data. The pilot's findings were released in September 2022.
The NDDA pilot
The Australian Government worked with the New South Wales, Victoria, South Australia and Queensland governments to test the feasibility of the National Disability Data Asset. The pilot ran from April 2020 to December 2021.
During the 18 months of testing, the agencies involved looked at the most effective ways to share and link information. The pilot also looked at how the data can be accessed and analysed to answer important questions about the lives of people with disabilities to improve outcomes.
The pilot focused on 5 test cases:
- Early childhood support
- Interaction with the justice system
- Transition from education to employment
- Mental illness and psychological distress
Each test case had different aims and questions the agencies were trying to answer. The common theme was to link the data from different agencies to get a more complete, connected picture of people’s experiences. In all cases, the data were de-identified to protect people’s privacy.
The 5 test cases
Early childhood support
Data about pre-school children in New South Wales was examined to see which children used disability support services before they started school. The test case also looked at which of these children used childcare services, saw a doctor and was taken to a hospital.
The test case tried to determine any links between children who used services before starting school and their learning outcomes.
Interaction with the justice system
This test case looked at data on 2.8 million people with disability who came in contact with the justice system, either as a victim or offender. More than 99 million data records were analysed to see the proportion of victims who have disability and the circumstances in which people with disability came into contact with the justice system.
The data from this test case can be used to better support people with disabilities navigate the justice system.
Transition from education to employment
The test case analysed how young adults with disability in South Australia transitioned to employment and further education. The main aim of the study was to identify barriers to employment data and work out the type of support needed to provide better outcomes.
One of the important aspects of the pilot was to determine the feasibility of answering such questions, and highlight any gaps and issues with the data.
Mental illness and psychological distress
Data concerning 696,000 people using disability services in Victoria was analysed to provide insights into the type of services used by people with disability suffering mental health and psychological distress. The data was collected between 2008 to 2018, and the pilot study aimed to uncover any links between the support services used and outcomes.
This test case looked at how people with disability used housing support services using national data as well as data from New South Wales, South Australia and Queensland.
The analysis found that people with disability are much more likely to use housing support services than people without disability. For example, people with disability are 8 times more likely to live in public housing. People with disability are also much more likely to live on their own.
Key findings and next steps for the NDDA
Apart from valuable insights about the experiences of people living with disability, the key findings of the pilot related to government processes and timeframes. It can take almost 12 months for government agencies to approve projects, identify appropriate data resources and provide access. There are also many steps to accessing, linking and sharing data. And these steps often need to be repeated each time the data is used.
An additional aspect of the pilot was the commissioning of two community engagement reports. The Purple report surveyed people living with disability about their views on using disability data for a National Disability Data Asset. The Sydney Policy engaged disability organisations to gather information to help design the NDDA. The community engagement reports were made available in November 2022.
Using the findings of the pilot and the community engagement reports, a plan has been developed outlining how governments can support gathering data, how to link and share the data and how to leverage the data to provide better outcomes for people living with disability.