Expanding Public Health Surveillance for People with Intellectual and Developmental Disabilities in the United States.

Abstract In this chapter we use three case studies (from the USA, Canada, and England) to frame a discussion of key conceptual and methodological issues associated with health-surveillance programs for people with intellectual disabilities. These include the challenges associated with (1) identifying people with intellectual disabilities in administrative databases; (2) identifying people with intellectual disabilities in population-based surveys through data linkage and cognitive testing and self- or informant report; (3) sampling issues; (4) the use of specific intellectual disability surveys; and (5) challenges in measuring health. We conclude with a discussion of the relationship between health surveillance and health policy.