Online Program

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

Tuesday, November 5, 2013 : 8:30 a.m. - 8:45 a.m.

Alexandra Bonardi, OTR/L, MHA, CDDER/EK Shriver Center, UMass Medical School, Boston, MA
Emily Lauer, MPH, Center for Developmental Disabilities Evaluation and Research, E. K. Shriver Center, University of Massachusetts Medical School, Waltham, MA
Holly Hill, PhD, Statistics and Epidemiology, RTI International, Atlanta, GA
Ellen Bishop, PhD, RTI International, Atlanta, GA
Christine Hill, RTI International, Atlanta, GA
Lisa Kilpatrick, RTI International, Atlanta, GA
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.

Learning Areas:

Public health or related public policy
Public health or related research

Learning Objectives:
Define the population with intellectual disability for the purpose of health surveillance. Describe the application of this operational definition to existing state-level data sets.

Keyword(s): Disability, Surveillance

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been the principal investigator for a national project that developed recommendations for an operational definition of intellectual disability for the purpose of health surveillance.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.