Existing data sources and challenges

Introduction

Many sources of data exist on people with disability. Each source has 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 useful data and some of these datasets can be configured to collect information about people with disability (such as by using a ‘flag’ or set of questions to identify disability and the extent of activity limitation or restriction).

The AIHW Specialist Homelessness Services Collection is a good example of an administrative dataset that contains useful data and has a question set to identify disability. For more information, see Homelessness services. Administrative data are, by definition, collected as a by-product of service delivery and therefore only contain data 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 21 sources of data on people with disability, 11 are surveys and 10 are administrative datasets. The definition of disability and the population scope for each of these data sources is presented in Definitions of disability data table (XLSX, 81kB).

This report uses multiple data sources to shed light on the experience of people with disability in Australia (see Table DATA.1). 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.

Table DATA.1: Key data sources used in this report

Survey/census data

COVID-19 (Coronavirus) and Children and Young People with Disability Survey, Children and Young People with Disability Australia (CYDA)
Education Survey 2020, CYDA
General Social Survey (GSS), ABS

Graduate Outcomes Survey (GOS), Quality Indicators for Learning and Teaching (QILT)

Household Impacts of COVID-19 Survey (HICS), ABS
Household Income and Labour Dynamics in Australia (HILDA) Survey, Melbourne Institute of Applied Economic and Social Research

Life Tables, ABS

National Social Housing Survey, Australian Institute of Health and Welfare (AIHW)

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

Patient Experience Survey (PEx), ABS
People with Disability and COVID-19 Survey, People with Disability Australia (PWDA)

Personal Safety Survey (PSS), ABS

Student Experience Survey, QILT

Survey of Disability, Ageing and Carers (SDAC), ABS

Youth Survey, Mission Australia

Administrative data

Australian Human Rights Commission (AHRC) 2018–19 Complaint statistics, AHRC

Services Australia administrative income support data, Department of Social Services (DSS)

Australian Government Housing Data Set, DSS

Higher Education Student Data Collection, Department of Education, Skills and Employment (DESE)

National Aged Care Data Clearinghouse, AIHW

National Disability Insurance Scheme (NDIS) data, National Disability Insurance Agency (NDIA)

National Housing Assistance Data Repository, AIHW

Nationally Consistent Collection of Data on School Students with Disability, DESE
NDIS Quality and Safeguards Commission data
Payment Demographic Data, DSS
Rental Affordability Snapshot, Anglicare
Report on Government Services, Productivity Commission

Research and Evaluation Database, 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
Linked data
Multi-Agency Data Integration Project (MADIP), ABS

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 (often referred to as intersectionality)
  • 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
  • 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 of the NDIS)
  • the quality and sustainability of the disability workforce.