CLINICAL REPORT Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities

Children with disabilities and their families have multifaceted medical, developmental, educational, and habilitative needs that are best addressed through strong partnerships among parents, providers, and communities. However, traditional health care systems are designed to address acute rather than chronic conditions. Children with disabilities require high-quality medical homes that provide care coordination and transitional care, and their families require social and financial supports. Integrated community systems of care that promote participation of all children are needed. The purpose of this clinical report is to explore the challenges of developing effective communitybased systems of care and to offer suggestions to pediatricians and policy-makers regarding the development of partnerships among children with disabilities, their families, and health care and other providers to maximize health and well-being of these children and their families. Pediatrics 2011;128:795–802 INTRODUCTION Children with special health care needs are a group of 10 million US children with a wide variety of conditions, medical needs, and caregiving requirements.1 However, children with disabilities, a subset of children with special health care needs, tend to have more complex conditions and functional impairments, often with technology dependencies and recurrent hospitalizations. In fact, 6.3% of US children between 5 and 15 years of age have 1 or more disabilities, and approximately 1%, or nearly one-half million children, are unable to care for themselves.2 Over the past 50 years, the number of children living with disabilities has tripled, largely as the result of health care advances that have allowed the survival of children with conditions that were historically incompatible with life.3 Children and adolescents have had the highest growth rate of disability of any age group during the past decade.3 Despite these changing demographics, the current system of health care continues to use an outdated system that emphasizes acute illness and well-child care at the expense of long-term management of chronic conditions and disabilities. Historically, hospital-based or institutional care was the only option for most children with complex medical conditions, technology dependence, and significant behavioral and emotional needs. More recently, social policy has promoted community-based programs that provide care for childrenwith disabilities in their homes and communities.4 For Nancy A. Murphy, MD, Paul S. Carbone, MD, and the COUNCIL ON CHILDREN WITH DISABILITIES