Medically complex children and early intervention for comprehensive medical care at home

We present the case of a 4-year-old with multiple congenital anomalies. These included complete tracheal rings with agenesis of the right lung and missing right ribs. He was hospitalized from birth until he was age 3 years and 6 months. At age 4 years and 4 months he had yet to move to a family home or experience his first day of school because he was in a transitional care facility. The intensity of his care was initially high, slowly declined over time, and eventually entered the range where he would be potentially manageable in a home environment. Despite the countless medical teams treating him, he did not receive a referral either to the early intervention or educational services that he had a right to under the Individuals with Disabilities Education Act. While his case is extreme, there is a disconnect between the United States health care and educational systems, which negatively impacts both the health and development of children with chronic conditions who require frequent and prolonged hospitalizations.