Medically involved infants in the Early Intervention Program: Implications for policy

The Early Intervention Program (EIP) is an entitlement program under the federal Individuals with Disabilities Education Act (IDEA) to facilitate the earliest identification and intervention for infants and toddlers with developmental delay birth through 36 months old. Physicians are required to refer age-eligible patients with suspected developmental delay to EI, which may fragment developmental intervention from medical care. This study was designed to determine the nature and extent of medical involvement among EI referred infants. Data were captured for 575 infants and toddlers referred for EI evaluation at an urban tertiary care hospital. Results: Medical involvement was indicated by the presence of medical conditions in these categories: prematurity (23%, mostly with birthweight under 1,000 grams and less than 26 weeks gestation), organ system anomalies (25%), genetic and inborn metabolic disorders (19%), neurologic disorders (20%), and infectious diseases (2%). Medical involvement was highest for infants (<12 months), 90%, p<0.01. This association was corroborated with a comparison sample from a community hospital. We conclude that infants referred to EI meet criteria for “children with special healthcare needs.” They urgently require coordination of developmental and medical services to optimize outcomes and prevent quality of care issues (e.g., safe handling of medically fragile infants in physical therapy). These data underline the importance of opposing a proposed federal change of rulemaking which would prevent states from receiving Medicaid reimbursement for EI expenditures for intervention in non-medical settings. If implemented, this rule would harm states financially and potentially violate IDEA and the Americans with Disabilities Act.