Viewing Services for Children and Youth With Special Health Care Needs Through a Community Lens

Abstract

Children and youth with disabilities and special health care needs (CYSHCN) represent 13% to 15% of the US population. Their concerns are physical, intellectual, emotional, and social. Frequently, these children and youth contend with multiple, compounded problems. Although the medical, educational, and social systems address the concerns of CYSHCN as high priorities, CYSHCN from traditionally underserved groups continue to face significant barriers to community inclusion. They often do not enjoy the fruits of the new types of health, educational, and social services afforded to other CYSHCN. In this supplement to Pediatrics, we present a compilation of articles from researchers, clinicians, policy makers, medical educators, community-based organizations, and parents. Collectively, these authors ask the question, "How can we break through the persistent barriers that keep CYSHCN from underserved groups from benefiting from community inclusion and community-based services?"Pediatricians and other child-helping professionals are increasingly aware that new approaches including parent-professional partnerships and community-based participatory research can help break down barriers faced by children and families from underserved communities. In the community, new integrated models offer a potential path for improving the health and life experiences of CYSHCN from traditionally underserved communities. In this supplement to Pediatrics, we explore some of the new ways that research projects and service-delivery programs are bringing families, communities, and providers together to review data, question assumptions, follow trends, query results, and suggest modifications in direction. BACKGROUNDIn 1999, the Olmstead decision of the US Supreme Court (Olmstead v L. C. and E. W.) spotlighted the fact that well after the passage of the Americans With Disabilities Act, people with disabilities were encountering persistent barriers to community integration. Although the Olmstead decision related primarily to the concerns of adults with disabilities, it had important implications for children and adolescents, particularly for traditionally marginalized and minority populations. As a direct response to the Olmstead decision, the National Institute on Disability and Rehabilitation Research (NIDRR) identified "children and youth with disabilities and special health care needs from traditionally underserved communities" as a group that had been largely bypassed by many disability service reforms and community-inclusion initiatives. In 2005, to study this issue and to stimulate corrective action, the NIDRR released a request for proposals for a national rehabilitation research and training center focused on issues pertinent to these children and youth.

Setting Up a Medical Home for Chinese Immigrant Families with Children with Special Health Care Needs: A Step-Wise Approach

“…Children with special health care needs (CSHCN) are those children who require more than routine health and related services for ongoing physical, emotional, behavioral, and developmental conditions (McPherson et al, 1998). Although the prevalence rate is thirteen to fifteen percent of the general U.S. population (Palfrey et al, 2010), CSHCN account for 2.5 to 20 times more utilization of health care resources than children without chronic health conditions and for seventy percent of all health care resources for children (Ireys et al, 1997).…”