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

  • C. Jason Wang
    Correspondence
    Address correspondence to C. Jason Wang, MD, PhD, Boston Medical Center, 88 East Newton St, Vose Hall, 3rd Floor, Boston, Massachusetts 02118.
    Affiliations
    RAND Health, Santa Monica, Calif (Drs Wang, Lim, Elliott, and Schuster); Department of Pediatrics, Boston Medical Center and Boston University School of Medicine, and Department of Maternal and Child Health, Boston University School of Public Health, Boston, Mass (Dr Wang); Department of Health Systems and Policy, UMDNJ-School of Public Health, New Brunswick, NJ (Dr Rogowski); Division of General Pediatrics, Department of Medicine, Children's Hospital Boston, Boston, Mass (Ms Ratner and Dr Schuster); and Harvard Medical School, Boston, Mass (Dr Schuster)
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  • Marc N. Elliott
    Affiliations
    RAND Health, Santa Monica, Calif (Drs Wang, Lim, Elliott, and Schuster); Department of Pediatrics, Boston Medical Center and Boston University School of Medicine, and Department of Maternal and Child Health, Boston University School of Public Health, Boston, Mass (Dr Wang); Department of Health Systems and Policy, UMDNJ-School of Public Health, New Brunswick, NJ (Dr Rogowski); Division of General Pediatrics, Department of Medicine, Children's Hospital Boston, Boston, Mass (Ms Ratner and Dr Schuster); and Harvard Medical School, Boston, Mass (Dr Schuster)
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  • Jeannette Rogowski
    Affiliations
    RAND Health, Santa Monica, Calif (Drs Wang, Lim, Elliott, and Schuster); Department of Pediatrics, Boston Medical Center and Boston University School of Medicine, and Department of Maternal and Child Health, Boston University School of Public Health, Boston, Mass (Dr Wang); Department of Health Systems and Policy, UMDNJ-School of Public Health, New Brunswick, NJ (Dr Rogowski); Division of General Pediatrics, Department of Medicine, Children's Hospital Boston, Boston, Mass (Ms Ratner and Dr Schuster); and Harvard Medical School, Boston, Mass (Dr Schuster)
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  • Nelson Lim
    Affiliations
    RAND Health, Santa Monica, Calif (Drs Wang, Lim, Elliott, and Schuster); Department of Pediatrics, Boston Medical Center and Boston University School of Medicine, and Department of Maternal and Child Health, Boston University School of Public Health, Boston, Mass (Dr Wang); Department of Health Systems and Policy, UMDNJ-School of Public Health, New Brunswick, NJ (Dr Rogowski); Division of General Pediatrics, Department of Medicine, Children's Hospital Boston, Boston, Mass (Ms Ratner and Dr Schuster); and Harvard Medical School, Boston, Mass (Dr Schuster)
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  • Jessica A. Ratner
    Affiliations
    RAND Health, Santa Monica, Calif (Drs Wang, Lim, Elliott, and Schuster); Department of Pediatrics, Boston Medical Center and Boston University School of Medicine, and Department of Maternal and Child Health, Boston University School of Public Health, Boston, Mass (Dr Wang); Department of Health Systems and Policy, UMDNJ-School of Public Health, New Brunswick, NJ (Dr Rogowski); Division of General Pediatrics, Department of Medicine, Children's Hospital Boston, Boston, Mass (Ms Ratner and Dr Schuster); and Harvard Medical School, Boston, Mass (Dr Schuster)
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  • Mark A. Schuster
    Affiliations
    RAND Health, Santa Monica, Calif (Drs Wang, Lim, Elliott, and Schuster); Department of Pediatrics, Boston Medical Center and Boston University School of Medicine, and Department of Maternal and Child Health, Boston University School of Public Health, Boston, Mass (Dr Wang); Department of Health Systems and Policy, UMDNJ-School of Public Health, New Brunswick, NJ (Dr Rogowski); Division of General Pediatrics, Department of Medicine, Children's Hospital Boston, Boston, Mass (Ms Ratner and Dr Schuster); and Harvard Medical School, Boston, Mass (Dr Schuster)
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      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.

      Key Words

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