Disability data is information about people with disability, their experiences, services, outcomes and barriers.

It can come from surveys, the Census, government programs, health and education systems, research, and lived experience.

Different datasets define disability in different ways because they are designed for different purposes.

For example, a survey, the Census, the NDIS and hospital data may all count different groups of people.

This means the numbers can vary depending on the question being asked.

Good disability data can help show what is working, what is not working, and where change is needed. It can support better policy, services, funding decisions and accountability.

Data alone does not change systems.

Change happens when data is connected to lived experience, decision-making, funding, policy action and accountability.

Some people are less visible in disability data, including:

• people who are not connected to formal services,

• people in regional and remote areas,

• people from culturally and linguistically diverse communities,

• people with psychosocial disability, and

• people with communication barriers.

The National Disability Data Asset, or NDDA, is a national program designed to improve how disability data is linked, governed and used.

In 2026, the NDDA program is using existing data assets, including PLIDA and the National Health Data Hub, while continuing work on disability data improvement, disability flags, co-governance and ethical oversight.

You can visit the NDDA here.

Access depends on the dataset and approval process.

Some government agencies, researchers, universities, research institutes and eligible organisations may be able to apply for access through the Australian Bureau of Statistics or the Australian Institute of Health and Welfare.

PLIDA is the Person Level Integrated Data Asset.

It links information from different government datasets to help researchers and policymakers better understand people’s experiences across systems.

You can visit PLIDA here.

The National Health Data Hub links health data, such as hospital, Medicare, medicines, cancer and mortality data.

It can help show health service use and outcomes, but disability is not yet consistently identified across all health datasets.

You can visit the National Health Data Hub here.

SDAC is the Survey of Disability, Ageing and Carers, run by the Australian Bureau of Statistics. It is one of Australia’s major sources of population-level information about people with disability.

The next SDAC is planned for 2028, with results expected from late 2029 or early 2030.

You can learn more about the SDAC here.

Disability flags are ways of identifying people with disability in datasets.

They can help improve analysis, but they need to be carefully designed because not everyone with disability is captured in administrative data.

Information about children and young people with disability is spread across many systems, including education, the NDIS, health and employment data.

It can be hard to compare, and there are gaps in intersectional data, long-term outcomes, participation, inclusion and lived experience.

School data could be improved by using more consistent definitions and involving students and families.

This includes input from allied health professionals and specialists, and better linking of data on support, participation, exclusion, and outcomes.

Numbers can show patterns, but lived experience helps explain what those patterns mean.

People with disability need to be involved in deciding what is measured, how data is used, and what action should follow 

Organisations should be clear about what the data can and cannot show.

They should avoid deficit framing, protect privacy, include lived experience, and ask who may be missing from the data.

Key gaps include reasonable adjustments in:

• health care,

• quality of care,

• barriers to access,

• outcomes for people not in the NDIS,

• children and young people,

• psychosocial disability,

• regional and remote communities,

• culturally diverse communities,

• restrictive practices,

• child protection, and

• intersectional experiences.

We need to ask: what does the data show, who is missing, what does lived experience tell us, who needs to act, and how will change be measured?

Resources recommended by CYDA following the event:

Australian Bureau of Statistics (2025). Children and young people with disability, 2022. abs.gov.au/articles/children-and-young-people-disability-2022

Australian Bureau of Statistics (2024). Autism in Australia, 2022. abs.gov.au/articles/autism-australia-2022

Australian Curriculum, Assessment and Reporting Authority (2025). School students with disability. acara.edu.au/reporting/national-report-on-schooling-in-australia/school-students-with-disability

Australian Disability Clearinghouse on Education and Training (2026). Current higher education data analysis. adcet.edu.au/he-data-analysis

Australian Institute of Health and Welfare (2025). Young people in employment. aihw.gov.au/australias-disability-strategy/outcomes/employment-and-financial-security/young-people-in-employment

Children and Young People with Disability Australia (2025). Three in four disabled students are bullied or excluded at school. cyda.org.au/three-in-four-disabled-students-are-bullied-or-excluded-at-school-and-its-getting-worse-new-survey-reveals

O'Flaherty, M., et al. (2024). Australian children with disabilities' unmet support needs: Evidence from Better Support for Kids with Disabilities survey. doi.org/10.14264/db88eeb

Productivity Commission (2024). A path to universal early childhood education and care. pc.gov.au/inquiries-and-research/childhood/report

Quality Indicators for Teaching and Learning (2023). Student experience survey. qilt.edu.au/surveys/student-experience-survey-(ses)

Key resources for researchers working with Australian disability datasets:

ABS DataLab — access pathway for PLIDA and integrated ABS datasets. abs.gov.au/about/data-services/data-integration/data-integration-projects/apply-data-access

ABS Sources of Disability Statistics 2018–2023 — comparison of ABS disability measures including SDAC, Short Disability Module and Census, with strengths and limitations of each. abs.gov.au/statistics/health/disability/sources-disability-statistics/latest-release

ABS Disability Data Measures project — work to develop a shorter, consistent question set for use across population surveys and mainstream services, responding to Disability Royal Commission Recommendation 12.5. abs.gov.au/statistics/health/disability/disability-data-measures-project

AIHW National Health Data Hub — information on linked health datasets available for research. aihw.gov.au/about-our-data/our-data-collections aihw.gov.au/about-our-data/our-data-collections

NDDA Charter — outlines acceptable and unacceptable uses of de-identified disability data, endorsed by disability ministers June 2024. 

NDDA Council and Ethical Oversight Panel — information on co-governance structure and how to get involved.