What are the key data gaps?

People with disability in Australia brings together information from over 20 national data sources to contribute to a greater understanding of disability in Australia. These include population surveys and administrative data sets. Although much is known about how people with disability experience daily life, critical data gaps remain. For example, there is a lack of information on:

  • what services people with disability use (across mainstream and specialist areas), and how coordinated, timely, appropriate and effective they are
  • how much contact people with disability have with the justice and child protection systems, both as victims and as offenders
  • how the experience of disability and support services varies by location or for groups with intersecting characteristics—such as Aboriginal and Torres Strait Islander people with disability, people with disability from culturally and linguistically diverse backgrounds, people with disability living in remote locations, and people with disability who are lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+)
  • the pathways, impacts and outcomes for people with disability; for example, how successful is the transition from school to further education or employment
  • unmet need for services (within and outside of the NDIS)
  • the quality and sustainability of the disability workforce.

These gaps largely result from a mix of issues with existing data (such as inconsistent definitions of disability across data sources and key data not being widely available for use or sharing), and data not being collected at all (such as in many mainstream data collections).

Opportunities to enhance the evidence base about people with disability include:

  • improving the quality and comparability of data across sources, such as by gaining agreement to adopt more consistent definitions across data collections where possible, or adding a disability ‘flag’ to mainstream data collections (an agreed set of questions to identify people with disability and the severity, or degree, of their disability)
  • maximising the use of existing data sources; for example, by bringing together information from multiple data sources, such as in this report
  • adding to available data sources to cover priority data gaps, such as by enhancing or adding data items to existing data collections, enabling data sharing and linkage of data, and creating new data collections or data assets.

These gaps and opportunities are not exhaustive, but are a starting point for future discussion. The Australian Institute of Health and Welfare (AIHW) continues to work with other statistical agencies and data custodians to maximise and streamline the collection of data about people with disability and to improve its quality.

The Australian, New South Wales, Victorian, South Australian and Queensland governments are working together with the National Disability Insurance Agency and the AIHW to pilot test the development of a National Disability Data Asset. This will bring together data from a range of domains relevant to people with disabilities and their carers, such as health and wellbeing; learning and skills; justice, safety and rights; personal and community support; inclusion and accessibility; and economic security. The 18-month pilot phase is intended to demonstrate value for both government and community use, including platforms and information for people with disability, wider public reporting, and research.