Existing data sources and challenges

Introduction

There are many data sources that contain information about people with disability. These have varying degrees of accessibility, quality and usefulness. For example, some sources are not widely available for use, and some are useful only if linked to another source.

This report draws on a range of data sources, including survey and administrative data, to shed light on the experiences of people with disability in Australia. Although these sources offer a comprehensive overview, important data gaps remain, and there are still questions that need to be answered or explored.

Administrative and survey data 

Information about people with disability comes from 2 major types of data sources:

  • administrative – collected when running a service or program (such as income support, taxation, or health care)
  • survey – collected for a sample of individuals or households on a given topic.

Each has advantages and disadvantages.

Administrative data

Many administrative datasets have data about people with disability. Some of these datasets contain ‘disability flags’ – a set of questions to identify records of people with disability within the data collection. Other datasets do not contain such flags.

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. 

Administrative data are collected as a by-product of service delivery. Therefore, they:

  • only contain data on people receiving these services 
  • only contain information directly relevant to the service provision. They are unlikely to include data on client outcomes outside of the service, or on client satisfaction with the service (although some service providers do separately survey consumers of their services).

Survey data

Population surveys can be used for:

  • estimating the prevalence of disability in the population, including changes over time
  • collecting information about people’s experiences across different life areas. 

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

However, survey data have some limitations:

  • as a dedicated data collection exercise, surveys are costly to run, and there may be a gap of several years between data collections
  • surveys usually collect information from a sample of the population, and the results may be biased by who is selected to participate in a survey
  • the information collected is restricted by the questions asked, and the available response options may be too prescriptive.

The quality of the survey data is also affected by how well the respondent understands the questions and how much the respondent trusts the survey.

Key data sources about people with disability

Survey/census data

  • Australia’s Disability Strategy Survey, Department of Health, Disability and Ageing (DHDA)
  • Census of Population and Housing, Australian Bureau of Statistics (ABS)
  • Children and Young People with Disability Australia (CYDA) surveys (various)
  • General Social Survey (GSS), ABS
  • Graduate Outcomes Survey (GOS), Quality Indicators for Learning and Teaching (QILT)
  • Household, Income and Labour Dynamics in Australia (HILDA) Survey, Department of Social Services (DSS) and Melbourne Institute of Applied Economic and Social Research 
  • 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)
  • 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
  • Higher Education Student Data Collection, Department of Education (DoE)
  • Nationally Consistent Collection of Data on School Students with Disability, DoE
  • National Disability Insurance Scheme (NDIS) data, National Disability Insurance Agency (NDIA)
  • National Housing Assistance Data Repository, AIHW
  • NDIS Quality and Safeguards Commission data
  • Report on Government Services, Productivity Commission
  • Services Australia income support data, collated and published by 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 ways in which data collections capture information about a person’s disability
  • poor adoption of a disability flag to identify people with disability in mainstream data sources
  • inability to reliably report on specific disability population sub-groups (refer to Box 1)
  • fragmented, dispersed and incomplete data about services used by people with disability (specialist and mainstream)
  • data being collected but not made available for analysis and reporting
  • limited integration of data across services (specialised and mainstream) and life domains.

Box 1. Examples of disability population sub-groups for whom information is limited

Aboriginal and Torres Strait Islander (First Nations) people

Data about First Nations people collected in population surveys can be affected by small sample size and geographic constraints (ABS 2019). For example, the Survey of Disability, Ageing and Carers (SDAC) does not collect data from people living in very remote areas or in discrete Aboriginal and Torres Strait Islander communities (ABS 2024). 

As a result, information about First Nations people with disability is usually sourced from the:

  • Australian Census
  • National Aboriginal and Torres Strait Islander Health Survey
  • National Aboriginal and Torres Strait Islander Nutrition and Physical Activity Survey. 

However, these surveys do not identify disability as well as the more detailed set of questions used in the SDAC (ABS 2025a). Survey questions about disability may also not easily translate into concepts relevant to First Nations people (Avery 2018, ABS 2025b).

LGBTIQ+ people

The LGBTIQ+ community includes individuals who identify as lesbian, gay, bisexual, transgender, intersex, queer or otherwise diverse in gender, sex or sexuality. 

LGBTIQ+ people can face harassment and discrimination based on their identity. They may also experience poorer health outcomes than other Australians.

Recently, there have been developments in national data collections to capture information about people’s gender characteristics and sexual orientation. For example, the ABS introduced a revised set of questions to collect information on gender, sex, and sexual orientation (ABS 2020).

However, the quality of data about this group of people with disability in survey collections is often affected by small sample size. This means there is still very limited reporting on the intersection of LGBTIQ+ and disability. 

People who experienced violence, abuse, and neglect

Several ABS surveys collect data about crime-related experiences of people with disability. These include the Survey of Disability, Ageing and Carers (SDAC), Personal Safety Survey, Personal Fraud Survey and Crime Victimisation Survey (ABS 2025c).

However, these data have some limitations:

  • they are only collected for people who live in the community (in private dwellings) and therefore exclude those in cared accommodation
  • they are only collected by personal interview and therefore exclude some people with communication difficulties
  • disability status is collected as at the time of the survey, not at the time the violence or abuse occurred
  • different surveys use different approaches to identify disability. Shorter question sets used by surveys other than SDAC tend to overestimate the presence of disability (ABS 2025a). This could lead to understating the differences in outcomes of those with and without disability.

People who experienced discrimination

While the SDAC collects data on discrimination against people with disability, it does not collect these data for people without disability. This means experiences of discrimination cannot be compared for people with and without disability. 

Some information about experiences of discrimination can be drawn from the ABS General Social Survey (GSS). GSS collects data on various forms of discrimination including age and sex discrimination. However, GSS uses a shorter disability question set, which tends to overestimate the presence of disability (ABS 2025a). This could lead to understating the differences in experiences of discrimination between people with and without disability.

It is also difficult to estimate the direct effect of discrimination on people with disability. Data show that people with disability who have experienced discrimination tend to have lower rates of employment, income, and social participation, as well as poorer health outcomes than other people with disability. However, it cannot be assumed that poorer outcomes were caused by the experience of discrimination.

People who are homeless

Very few population surveys include a measure of homelessness. Those that do measure homelessness (such as the ABS Census of Population and Housing) may not capture disability as comprehensively as the SDAC, or not capture it at all.

The AIHW’s Specialist Homeless Services Collection collates data about people who have sought assistance from a homelessness agency. This collection includes a version of the AIHW’s standardised disability flag. However, due to differences in how disability questions are interpreted, data for young children may not be comparable with older age groups. 

A key initiative in this space is the proposed linkage of housing and homelessness data, to improve understanding of service pathways.

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 data on:

  • what services people with disability use (across mainstream and specialist areas), and how coordinated, timely, appropriate and effective they are
  • unmet need for services (both within and outside the NDIS)
  • the use of restrictive practices (such as seclusion and physical or chemical restraints)
  • people with disability in closed and segregated settings (such as specialist schools or group homes)
  • supported decision-making for people with disability, such as whether people with disability feel supported to make their own choices and remain in control of their lives
  • transition pathways of people with disability at key life points, such as from school to further education or employment
  • how much contact people with disability have with the justice and child protection systems, as victims and as offenders
  • the quality and sustainability of the disability workforce
  • causes of death of people with disability – such as potentially avoidable deaths.

These limitations were 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 existing data gaps. These related to 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.