Opportunity
For far too long, people with intellectual and developmental disabilities (I/DD) have been underrepresented in national research and health data. Health surveys often exclude people with I/DD entirely, or collect information without key demographic details such as age, race, ethnicity, or gender. The result is a persistent lack of accurate, consistent information about how many people have I/DD and how healthy they are.
This gap in data makes it harder to design effective programs and policies that truly meet the needs of people with I/DD and their families. To address this challenge, the Administration for Community Living (ACL) launched I/DD Counts—a cross-agency initiative to establish and maintain accurate data on the prevalence of I/DD in the United States and its territories, and to improve how health-related data about people with I/DD are collected, analyzed, and interpreted.
Approach
As the project’s logistics contractor for ACL, HSRI partners with a broad coalition of federal agencies, self-advocates, advocacy organizations, and researchers—including colleagues from ASPE, CDC, CMS, and NIH—to strengthen the infrastructure and coordination behind I/DD Counts.
HSRI helps align data collection and reporting efforts across agencies and states, supports collaborative workgroups, and fosters consistency in how I/DD is defined and measured. HSRI’s team, led by Vice President for IDD and Aging and Disability Initiatives Alixe Bonardi, works closely with national experts to ensure the project reflects both strong scientific foundations and the lived experiences of people with I/DD.
Impact
By improving how data on I/DD are collected, shared, and used, I/DD Counts is helping to build a clearer and more accurate picture of disability in America. These efforts will strengthen the evidence base for decision-making—supporting equitable funding, guiding program design, and advancing policies that promote health, inclusion, and well-being for people with I/DD and their families nationwide.