Through the Looking Glass: A Data Lens on Health of People With Intellectual and Developmental Disabilities

Population level data on health of people with intellectual and developmental disabilities (IDD) are sorely needed to identify their health status, health disparities, and health needs. Key considerations to inform programs and policies need to address prevalence, problem identification, and progress assessment. Recent advances have been made in health data about people with disabilities generally that identify strategies for improving health data for people with IDD, including critical need for a standardized operational definition and survey identifiers of IDD. Past and current actions by federal agencies' to improve health data for health equity are summarized. Emerging developments in IDD health data are identified, including increasing use of self-report, data linking and harmonizing, intersectionality, and recognition of ableism.