Data about IDD and Health

In the United States, the lack of comprehensive surveillance data on individuals with intellectual and developmental disabilities (IDD) represents a significant gap in our understanding and support of this population. Administrative data can be useful but have limitations--for instance: among adults with IDD, only 22% (1.58 million out of 7.39 million) were known to their state developmental disabilities agency in 2019¹. Despite the progress in various fields of public health and social services, data collection and analysis related to IDD remain insufficient. This gap hinders the development of effective policies, the allocation of resources, and the delivery of services to those in need.

Individuals with IDD often face unique challenges and have specific needs that differ from the general population. Without accurate and detailed data, it becomes increasingly difficult to address these challenges adequately.