Integrated Behavioral Health in Primary Care for Adults with Complex Childhood Onset Medical and Developmental Diagnoses

Increased life expectancy for individuals with complex pediatric-onset conditions means most of this population survive into adulthood. While this is great news for individuals and their families, the traditional adult medical model must adapt to extend the care provided by specialty pediatric practices to primary care. In this paper, we introduce a model of integrated behavioral health (IBH) in a primary care practice for adults with childhood onset medical and developmental conditions. Our discussion includes the role of IBH providers (i.e., psychologists, psychiatrists, and social workers) as members of the integrated team, patient engagement and response to treatment, and innovative ways we strive to meet patient needs. Our review of electronic health records of patients seen at the UR Medicine Complex Care Center suggest that IBH is feasible and highly utilized, with 216 patients (40%) having had contact with an IBH provider on the team at least once. We discuss the challenges of meeting the longer-term needs of this complex patient population and our directions for future growth including creating peer and caregiver support networks, expanding services offered, and continued collaboration with community partners.