Data Linkages between Public Health and Education Programs for Young Children with Special Needs

Background: Health and educational programs are important in supporting optimal outcomes for young children with special needs, but little is known about capacity across the U.S. to link data for children served in state early intervention (EI) and early childhood special education (ECSE) programs with public health/health data. Methods: The Individuals with Disabilities Education Act Center for Early Childhood Data Systems conducted an online survey in 2013 with state EI and ECSE coordinators in all states, the District of Columbia, and Puerto Rico (94% and 96% response rates, respectively). Questions addressed state capacity to link EI and ECSE child-level data to vital records, birth defects registries, Early Hearing Detection and Intervention (EHDI), hospital, behavioral health, nutritional assistance, Medicaid, and all-payer claims data. Results: State EI coordinators reported linkages with Medicaid (42% of states), EHDI (37%), vital records and birth defects (both 21%), and all-payer claims (13%). Fewer than 10% of states reported linkages to the remaining health programs. For ECSE, 12% of states reported linkages with Medicaid, and fewer than 10% reported linkages to the other health programs. Developing EI/ECSE-health program linkages was a state priority for 71% of EI and 53% of ECSE coordinators. Conclusions: Linkages to health data were more common for EI than for ECSE, but both have considerable room for improvement.  Cross-system linkages increase state capacity to use data to improve the health and well-being of young children with special needs. State variation and federal and state initiatives to develop cross-system linkages will be discussed.