Children and Youth with Special Health Care Needs: Partnering with Families for Effective Advocacy Wendy S. Looman, PhD, RN, CPNP, & Linda L. Lindeke, PhD, RN, CPNP Currently, 10.2 million children (13.9%) from birth through 17 years of age in the United States have special health care needs (SHCN); these children represent 29% of households (Child and Ad- olescent Health Measurement Ini- tiative [CAHMI], 2007). The um- brella term “special health care needs” was officially adopted by the U.S. federal government in the Omnibus Balanced Budget Act of 1989 due to the efforts of an advo- cacy coalition led by the federal Maternal and Child Health Bureau (MCHB). A child has SHCN if he or she “has or is at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also requires health and related services of a type or amount beyond that required by children generally” (McPherson et al., 1998). Noncategorical terminology such as SHCN is useful because it groups children across many diag- noses and categorizes them by needs and functional difficulties. A recent survey using 2005-2006 data found that 85% of children with SHCN had functional difficulties, 57% had difficulty with bodily functions, 49% had difficulty with participation in any activity, and 42% had emotional or behavioral difficulties (CAHMI, 2007). This re- port found that needs of children with SHCN are complex: 86% needed prescription medications, 52% needed specialist care, 25% needed mental health care, 23% needed specialized therapies, and 11 % used durable medical equip- ment (CAHMI). The MCHB (2007) has issued a call to action to urge service provid- ers, communities, states, families, and federal partners to develop and improve community-based systems of care for children with SHCN and their families. Linking information systems, coordinating care, and identifying children with SCHN through ongoing screening are key priorities of the MCHB. Tiedje Wendy S. Looman is Assistant Professor, School of Nursing, University of Minnesota, and Pediatric Nurse Practitioner, Cleft Palate and Craniofacial Clinics, School of Dentistry, University of Minnesota, Minneapolis, Minn. Linda L. Lindeke is Associate Professor, School of Nursing, University of Minnesota, and Pediatric Nurse Practitioner, Neonatal Intensive Care Followup Clinic, Fairview University Medical Center, Minneapolis, Minn. Correspondence: Karen G. Duderstadt, PhD, RN, CPNP, University of California- San Francisco School of Nursing, Box 0606N411Y, San Francisco, CA 94143-0606; e-mail: karen.duderstadt@nursing.ucsf.edu J Pediatr Health Care. (2008). 22, 134- 136. 0891-5245/$34.00 Copyright © 2008 by the National Asso- ciation of Pediatric Nurse Practitioners. doi:10.1016/j.pedhc.2007.12.003 Section Editor Karen G. Duderstadt, PhD, RN, CPNP University of California–San Francisco, School of Nursing, Family Health Care San Francisco, California 134 Volume 22 • Number 2 Journal of Pediatric Health Care Department www.jpedhc.org Health Policy