Existing data sources and challenges


Many sources of data exist on people with disability. These sources have varying degrees of accessibility, quality and usefulness. Some sources, for example, are not widely available for use and some are useful only if linked to another source.

Administrative versus survey data sources

Broadly speaking, Australia's major data sources are:

  • administrative data, such as data collected when running a service or program
  • population survey data, such as data collected for a targeted sample of households on a given topic.

Each has advantages and disadvantages.

Administrative data

Many administrative datasets contain data relevant to people with disability. Some of these datasets contain information which can be used to look at use of services and outcomes for people with disability (such as by using a disability ‘flag’ – a set of questions to identify records of people with disability within the data collection, and the extent of activity limitations or participation restrictions). Other datasets do not contain such information, but could potentially capture this information in the future.

The AIHW Specialist Homelessness Services Collection is a good example of an administrative dataset that has a question set to identify disability. This data collection uses a version of the standardised disability flag developed by the AIHW. For more information, see ‘Homelessness services’.

Administrative data are, by definition, collected as a by-product of service delivery and therefore contain data only on people who are receiving those services. The information captured must also be directly relevant to service provision and is therefore unlikely to include information about broader client outcomes and client satisfaction with the service (although some service providers do separately survey consumers of their services).

Survey data

Population surveys are the best available data source for estimates of the prevalence and level of disability in the Australian population (including changes over time) and for capturing information about experiences across different life areas.

The Australian Bureau of Statistics' Survey of Disability, Ageing and Carers is the best example of a population survey that collects data on people with disability.

Certain constraints mean that survey data are often limited in capturing comprehensive data:

  • about some vulnerable groups within the disability community
  • on sensitive topics, like abuse and neglect
  • on changes over time for sub-populations.

Responses to surveys are also limited by how well the respondent understands the question and how much the respondent trusts the survey.

Data used in this report

This report uses more than 25 sources of data on people with disability, both survey and administrative. The definition of disability and the population scope for each of these data sources is presented in ‘Definitions of disability’ data table (see ‘Data’).

This report uses multiple data sources to shed light on the experiences of people with disability in Australia. While these data sources provide a broad overview of the experiences of people with disability, critical information gaps and/or questions to be answered or further explored remain.

Key data sources used in this report

Survey/census data

  • Australia's Disability Strategy Survey – Share with us, Department of Social Services (DSS)
  • Education Survey 2020, Children and Young People with Disability Australia (CYDA)
  • General Social Survey (GSS), Australian Bureau of Statistics (ABS)
  • Graduate Outcomes Survey (GOS), Quality Indicators for Learning and Teaching (QILT)
  • Household, Income and Labour Dynamics in Australia (HILDA) Survey, DSS and Melbourne Institute of Applied Economic and Social Research
  • Life Tables, ABS
  • National Aboriginal and Torres Strait Islander Health Survey (NATSIHS), ABS
  • National Aboriginal and Torres Strait Islander Social Survey (NATSISS), ABS
  • National Health Survey (NHS), ABS
  • National Social Housing Survey, Australian Institute of Health and Welfare (AIHW)
  • Patient Experience Survey (PEx), ABS
  • Personal Safety Survey (PSS), ABS
  • Student Experience Survey, QILT
  • Survey of Disability, Ageing and Carers (SDAC), ABS
  • Youth Survey, Mission Australia

Administrative data

  • Australian Government Housing Data Set, DSS
  • Australian Human Rights Commission (AHRC) Complaint statistics, AHRC
  • Benefit and Payment Recipient Demographic Data, DSS
  • Higher Education Student Data Collection, Department of Education, Skills and Employment (DESE)
  • Nationally Consistent Collection of Data on School Students with Disability, DESE
  • National Disability Insurance Scheme (NDIS) data, National Disability Insurance Agency (NDIA)
  • National Housing Assistance Data Repository, AIHW
  • NDIS Quality and Safeguards Commission data
  • Rental Affordability Snapshot, Anglicare
  • Report on Government Services, Productivity Commission
  • Services Australia administrative income support data, DSS
  • Specialist Homelessness Services Collection, AIHW
  • Total Vocational Education and Training (TVET) Students and Courses Collection, National Centre for Vocational Education Research (NCVER)
  • TVET Student Outcomes Collection, NCVER

What are the key challenges with existing data sources?

Key data challenges with existing data sources include:

  • inconsistent definitions of disability across data sources
  • poor adoption of a disability flag to identify people with disability across mainstream data sources
  • fragmented, dispersed and incomplete data about services used by people with disability (specialist and mainstream)
  • inability to reliably report on specific population groups within the broader disability population
  • availability of relevant data collected but not collated or otherwise available for statistical purposes
  • limited integration of data across settings and life area domains to examine pathways and outcomes for people with disability.

What main questions cannot be answered?

While data exist on many aspects of what life is like for people with disability in Australia, critical gaps make it difficult to comprehensively answer some questions.

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, as victims and as offenders
  • the use of restrictive practices (such as seclusion and physical or chemical restraints)
  • people with disability in closed and segregated settings and those with communication support needs
  • outcomes for people with different types of impairment
  • 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, intersex and queer (LGBTIQ+)
  • the pathways, impacts and outcomes for people with disability, for example, characteristics and outcomes of the transition from school to further education or employment
  • unmet need for services (both within and outside the NDIS)
  • the quality and sustainability of the disability workforce
  • supported decision-making for people with disability, such as on the extent to which people with disability are represented and supported in proceedings and decision-making processes
  • causes of death of people with disability – such as potentially avoidable deaths.

These limitations were further highlighted by the COVID-19 pandemic and the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Royal Commission). The Royal Commission made a range of recommendations to address specific data gaps relating to areas such as realising the human rights of people with disability, enabling autonomy, access to services and participation in all aspects of life, and achieving inclusive systems such as education, employment, and housing.