Reliable health data is important to supporting people with intellectual and developmental disabilities (I/DD). Being counted is a health equity and civil rights issue. Although data collection about people with disabilities generally has improved in recent decades, there is still not enough information on how many people with I/DD live in the U.S., how healthy they are, and what things affect their health. Since 2016, ACL has worked with federal agencies and other stakeholders to address these issues through the I/DD Counts initiative. I/DD Counts is a cross-agency initiative to improve how information about the health of people with I/DD is collected, analyzed, and understood. In November 2022, ACL organized a national summit that included people with I/DD, representatives from federal agencies, advocacy groups, researchers, and health care providers. The group discussed progress on its 2030 roadmap for health data equity, remaining gaps, and priorities for the future. The summit focused on six areas:
Data needed by federal agencies
Data needed by advocacy groups
What federal agencies are doing to improve data
What other organizations are doing to improve data
How to share information from improved data
Tools and skills needed to use improved data
This report summarizes the key ideas from the summit and actions recommended by and for the I/DD Counts initiative.
