2010-04-013

August 17, 2010

2010-04-013
Health Surveillance of Adults with Intellectual Disabilities        
Alixe Bonardi, OTR/L, MHA, University of Massachusetts
Project Summary:
This study will establish a solid foundation for feasible, effective and sustainable activities that describe the health of adults with intellectual disabilities in America. It will build on significant effort to date 5 to gather and catalogue health indicators in the population of adults with ID, both to provide methodologically sound investigation of health disparities as well as to establish accurate and valid benchmarks for health improvement in this population.  The University of Massachusetts's Center for Developmental Evaluation and Research (CDDDER) and the Human Services Research Institute (HSRI) will collaborate to develop foundational work to enhance health surveillance of adults with intellectual disability.  Building on CDDER and HSRI's experience with health and safety risk monitoring and practical concerns related to the collection of performance indicators in the National Core Indicators Database (NCI), the project team proposes to accomplish three aims: 1) The development of consensus operational definitions based on both deductive processes and inductive processes.  Project team will facilitate a national consensus panel review of both current data set definitions of ID, and develop indicators of priority variables. 2) The completion of a concise summary of national datasets that capture information about people with intellectual disability, along with critical review of their applicability for collection of health indicator data. 3) Statistical modeling and data match feasibility studies to establish recommendations for methodologies to gather data on representative samples of people with ID.  The project team will be guided by a Project Advisory Group (PAG), which will be established at the outset of the grant.  The advisory group will include people with intellectual disability as well as family members.