TitleExpanding Public Health Surveillance for People with Intellectual and Developmental Disabilities in the United States.
Publication TypeJournal Article
Year of Publication2015
AuthorsFox, MH, Bonardi, A, Krahn, GL
JournalInt Rev Res Dev Disabil
Date Published2015

Surveillance, as used in public health, refers to tracking incidence and prevalence of target populations as well as identifying characteristics that can influence or contribute to their health. A frequently cited figure for intellectual disabilities and developmental disabilities (ID/DD) prevalence in adults in the U.S. suggests approximately 4.6 million Americans live with these conditions, or about 1.5% of the adult population (). There are two primary reasons why this figure continues to be cited approximately 15 years after its initial publication. The first is that it uses data from a supplement to a well-respected, national health survey of people in the American population conducted in two phases during 1994–1995. This survey provided extensive health data on the disability population,but has not been administered since Absent a more recent update, the Disability Supplement to the National Health Interview Survey () continues to be used in spite of health and demographic changes in our general population since then that may call into question the accuracy of these prevalence numbers today. The second reason relates to the structural difficulties inherent in population-based surveillance for people with ID/DD using other approaches. These include a lack of a widely agreed upon operational definition, and challenges in administering surveys for ID/DD populations relating to communication, overcoming stigmatization, maintaining confidentiality, and assuring accurate proxy reporting.

Alternate JournalInt Rev Res Dev Disabil
PubMed ID27294014
PubMed Central IDPMC4902165
Grant ListCC999999 / / Intramural CDC HHS / United States