Factors Influencing the Enrollment of Eligible Extremely-Low-Birth-Weight Children in the Part C Early Intervention Program

Objective: To determine whether eligible extremely-low-birth-weight children (<1000 g) were enrolled in the federally enacted, state-coordinated Early Intervention (EI) program intended to help children with developmental delay or disability regardless of parental income, and the factors associated with enrollment. Methods: Retrospective analysis of 884 EI-eligible ELBW children born in South Carolina with birth weight 401 to 999 g, gestation ≥24 weeks, and survival for the first 120 days of life. We created a linked data set with data from Early Intervention (1996-2001), Vital Records (1996-1998), death certificates, and Medicaid. Each child was followed from birth to 3 years old, the program eligibility period. Results: A total of 54% of ELBW children were enrolled in EI at any time from birth to 36 months. Even among children ever enrolled in Medicaid (83% of all ELBW children), only 63% were enrolled in EI. Being born in a multiple gestational birth, having heavier birth weight (750 to 999 g), and having ever enrolled in Medicaid were positively associated with EI enrollment. Among Medicaid patients for whom perinatal data were available, additional risk adjustment showed that EI enrollment was more likely with birth in level 3 hospitals, birth weight 750 to 999 g, Neonatal Medical Index severity level V (most severe), and longer initial length of hospital stay. Conclusions: Only about half of eligible ELBW children in South Carolina were enrolled-much lower than reported elsewhere. Efforts are needed to understand why eligible infants are not being enrolled and to develop strategies to remedy the situation.