A Collaborative Approach to Improving Health Care for Children With Developmental Disabilities

* Abbreviations: ACP — : adaptive care plan PRAP — : Psychosocial Risk Assessment in Pediatrics According to the Centers for Disease Control and Prevention, 1 in 6 children living in the United States has at least 1 developmental disability.1 Developmental disabilities encompass a wide range of conditions, including attention-deficit/hyperactivity disorder, learning disorders, intellectual disabilities, autism spectrum disorder, moderate to profound hearing loss, blindness, stuttering, seizures, and cerebral palsy.2 Children with developmental disabilities are more likely than typically developing children to experience health care encounters.3 Although health care encounters can be difficult experiences for all children, many children with developmental disabilities have increased difficulties and struggle to cope and cooperate with health care appointments, expressing this through challenging behaviors. Challenging behaviors during appointments include difficulties complying with the demands of medical examinations and procedures, self-injurious behaviors, hyperactivity, aggression toward others, and destruction of property4; unfortunately, this may result in missed appointments and delayed care.5 Furthermore, many health care providers, including physicians, nurses, and allied health professionals, do not feel prepared to handle such behaviors during appointments.6 Parents and health care providers both agree that challenging behaviors prevent children from having productive health care encounters.7 Medical staff are in the position and well suited to adapt the overall health care experience (including the physical environment) to allow these children access to necessary medical care. Therefore, primary care physicians and other medical staff can alter the way they provide services to parents and children with developmental disabilities with strategies that augment family-centered care. Within family-centered care, medical staff engage families … Address correspondence to Melissa Liddle, MA, CCLS, CTRS, Department of Child Life and Integrative Care, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229. E-mail: melissa.liddle{at}cchmc.org