Optimizing Care for Young Children with Special Health Care Needs: Knowledge and Strategies for Navigating the System How can primary care physicians and other health care providers help families get the best care and services for young children with special health care needs (CSHCN)? They'll find the answers in this concise resource, a one-of-a-kind field guide to all the critical issues, policies, and practices affecting medical care for CSHCN from birth to age 5. Blending knowledge gained from the cutting-edge research of nationally prominent scholars with the real-world experiences of front-line authorities such as parents, primary care physicians, and specialists, this book helps readers create efficient and consistent medical homes that are truly responsive to the needs of children and families build productive advocacy partnerships to bring about necessary changes in policy and programs understand what parents experience as they learn to navigate the complex health care system, adapt to family life with their child, and pinpoint the socio-cultural biasesthey may have to contend with grasp the complexities of insurance, financing, and other resource-related programs for CSHCN Ideal for anyone who directly assists or works with families of CSHCN, this book will help providers effectively manage the health care system and optimize care for children with any kind of special health care needs. Edition

Excerpted from Section I of Optimizing Care for Young Children with Special Health Care Needs: Knowledge and Strategies for Navigating the System How can primary care physicians and other health care providers help families get the best care and services for young children with special health care needs (CSHCN)? They’ll find the answers in this concise resource, a one-of-a-kind field guide to all the critical issues, policies, and practices affecting medical care for CSHCN from birth to age 5. Blending knowledge gained from the cutting-edge research of nationally prominent scholars with the real-world experiences of front-line authorities such as parents, primary care physicians, and specialists, this book helps readers create efficient and consistent medical homes that are truly responsive to the needs of children and families build productive advocacy partnerships to bring about necessary changes in policy and programs understand what parents experience as they learn to navigate the complex health care system, adapt to family life with their child, and pinpoint the socio-cultural biasesthey may have to contend with grasp the complexities of insurance, financing, and other resource-related programs for CSHCN Ideal for anyone who directly assists or works with families of CSHCN, this book will help providers effectively manage the health care system and optimize care for children with any kind of special health care needs. Edition by Elisa J. Sobo, Ph.D., and Paul S. Kurtin, M.D.

Copyright © 2007 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher

An estimated 15% to 20% of U.S. children have a significant ongoing health care need related to a chronic condition. Most of these children require long-term services from a variety of health care professionals and organizations and use substantially more pediatric health services than their healthy peers (Newacheck et al., 1998); indeed, their care accounts for the majority of pediatric health care costs (Ireys, Anderson, Shaffer, & Neff, 1997).

The overall costs of health care for children are low, however, and for this and other reasons, not much attention has been paid to the health care needs of children in general let alone children with special health care needs (CSHCN; Forrest, Simpson, & Clancy, 1997).1 The relative dearth of child-focused health services research as well as the broader scholarly bias favoring the adult perspective even in studies that ostensibly deal with children (Castaneda, 2002; Mayall, 2002) has led to a situation in which adult standards are all too often applied within the field of children’s health.

The service standard usually applied to adults provides only for treatment of specific, discrete conditions. It does not provide for services to enhance developmental potential, which, theoretically, already has been achieved in adults (see Castaneda, 2002). The service standard does not include treatments or interventions in the present to offset the high probability of future impairment. And there is no explicit role for the family in the adult-focused service approach.

Perhaps more important, the focus of adult medicine on disease and cure, as opposed to prevention and development in pediatrics, and the differential epidemiology associated with childhood conditions, in which numerous conditions exist but each affects only a few children, has stifled interest in CSHCN. In the context of the U.S. medical community’s penchant for specialization (Good, 1998), differential epidemiology also has meant that the typical approach to care for CSHCN has been categorical in nature; that is, it has been driven by a child’s specific special health diagnosis—his or her category of disease—and not by the child’s overall health needs or the needs of the family.

Even relatively common specific health conditions (e.g., Down syndrome, cerebral palsy) are unusual enough that an individual primary care physician may follow only one or two affected children at a time (Cooley, 1999). As such, primary care physicians may feel that they lack the necessary expertise or experience with a given condition to treat and monitor it properly. In more complex cases, collaboration by the primary care physician with other health care providers is probable, given that no single provider can arrange or deliver all the needed services (Perrin, 2002). This is due in part to the fragmented nature of today’s health care system, and in part to the time and fiscal constraints imposed by managed care that make it unlikely that a general pediatrician or family physician can keep current with the condition-specific literature and meet all of the patients’ specialized needs. U.S. Secretary of Health and Human Services Tommy G. Thompson has noted, “Even providers with appropriate training find our current service system offers few incentives to ensure appropriate health care for children and adults with special needs” (p. iii; U.S. Public Health Service, 2002).

We should therefore reconsider estimates regarding the size and composition of the CSHCN population. As pediatrician Ruth Stein explains in Chapter 1, and as subsequent chapters demonstrate, the actual number of CSHCN depends on one’s definition. Definitions have implications for program access because they determine who can receive what care, where, when, from whom, and for how long—and who will pay for that care (Beers, Kemeny, Sherritt, & Palfrey, 2003). Some classification schemes focus on impairments, others on etiologies. Further, the breakdown in terms of specific conditions depends on how comorbidities are classified. In recent years, major efforts have been made to increase consistency in how children with special health care needs is defined for government, program, and research purposes. In any case, asthma, seizure disorder, cerebral palsy, mental retardation, and attention-deficit/hyperactivity disorder (ADHD) are among the most common conditions; other, less common conditions include congenital heart disease, spina bifida, sickle cell disease, arthritis, hemophilia, and AIDS (Perrin, Kuhlthau, Gortmaker, Beal, & Ferris, 2002)

In Chapter 1, Ruth Stein focuses on defining the CSHCN population, and in Chapter 2, health service researchers Karen Kuhlthau, Sheila Bloom, Monica Marthell, and Hodon Mohamed discuss the organization, administration, and evolution of key policies affecting health care service delivery for children with special health care needs. Numerous federally supported programs exist to meet specific needs of CSHCN Setting the Stage for Change 3 and their families, but these programs, the policies behind them, and the services they support are variable and complex.

In Chapter 3, pediatrician John Neff ties the CSHCN demographic profile and policy issues to the economic context of health care provision. He discusses financial issues that are integral to working with CSHCN, including costs to health plans, practitioners, and families. Costs and types of services CSHCN receive are compared with those received by children without special health care needs. The final section of the finance chapter addresses the current fiscal realities that all states face, and demonstrates how an unraveling of support could have a major deleterious impact on families, practitioners, hospitals, and communities.