Health surveillance in the population with intellectual disability: Case definition in state level data

Section 4302 of the Affordable Care Act requires minimum data collection standards that allow for disability status to be identified in national health surveillance. While this requirement aims to enhance national surveillance in the population with disability, it does not allow for differentiation of sub-populations with known health disparities, specifically the population with intellectual disability (formerly called mental retardation). In the absence of adequate national surveillance approaches to monitor the health of this population, researchers are exploring the use of state level administrative and survey data sources that capture information on this population's health status. A structured framework is used to identify the extent to which the population with intellectual disability is captured in each source. Presenters will offer an operational definition of intellectual disability for national health surveillance, developed in 2011 by a national panel of experts, to guide both prospective collection of surveillance data and the analysis of secondary or linked existing data sets. The definition will be applied to the population definition used in state level datasets from 5 states participating in a CDC funded pilot study, with discussion and visual demonstration of the expected representativeness and utility of each data source for health surveillance of adults with intellectual disability.