Health and Access to Health Services for People with Disability in Australia: Data and Data Gaps

The right of people with disability to enjoyment of the highest attainable standard of health without discrimination on the basis of disability is enshrined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Among its obligations as a signatory to the CRPD, Australia is required to collect appropriate information, including statistical and research data, to inform development and implementation of policies to give effect to the Convention. In this commentary, we first describe how the International Classification of Functioning, Disability and Health (ICF) conceptual model of disability can be operationalised in statistical data collections, with a focus on how this is achieved in key Australian data sources such that people with disability can be identified as a population group. We then review existing statistical data on health and health service use for people with disability in Australia, highlighting data gaps and limitations. Finally, we outline priorities and considerations for improving data on health and access to health services for people with disability. As well as conceptual, practical, and ethical considerations, a key principle that must guide future disability data development is that people with disability and their representative organisations must be involved and participate fully in the development of disability data and statistics, and in their use.