What are the key data gaps?

People with disability in Australia brings together information from more than 35 national data sources to contribute to a greater understanding of disability in Australia. These include population surveys and administrative data sets. Although these data sources provide important insights into the experiences of people with disability in Australia, 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
  • contact of people with disability with the justice and child protection systems
  • how access to and quality of disability and support services vary 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, intersex and queer (LGBTIQ+)
  • 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 immediate and long-term impacts of natural disasters and emergencies on people with disability
  • 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 many mainstream data collections not including information which would enable people with disability to be identified). The COVID-19 pandemic further highlighted these limitations, with information about COVID-19 vaccination status, infection rates and deaths among people with disability not readily available using existing administrative data sources.

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.

During 2020 and 2021, the Australian, New South Wales, Victorian, South Australian, Queensland and Australian Capital Territory governments worked together to pilot test the development of a National Disability Data Asset (NDDA). The pilot brought together data from a range of domains relevant to people with disability, their families and carers, such as health and wellbeing; learning and skills; the justice system, safety and rights; housing; personal and community support; inclusion and accessibility; and economic security. The pilot phase, which concluded as scheduled on 31 December 2021, demonstrated value for government, academic and community use, including options for information-sharing, research, and wider public reporting. Decisions from governments are now being sought about further work to establish an enduring NDDA.

As part of Australia’s Disability Strategy, the Australian, state and territory governments agreed to develop a comprehensive data plan – Australia’s Disability Strategy Data Improvement Plan – to ensure data needed to measure outcomes for people with disability are collected, shared and progressively improved over the life of the Strategy, and to identify where data need to be linked between systems to improve our understanding of the impact of the Strategy.