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In 1997, the Maternal Child Health Bureau adopted the title Children with Special Health Care Needs (CSHCN) to identify children who have, or are at risk of having, a chronic physical, developmental, behavioral, or emotional condition that requires health and related services of a type or amount beyond that required by children generally.1 Applying this definition to data collected in the 1994 National Health Interview on Disability, 18% of the pediatric population is identified as having special needs. In three subsequent survey reports, the National CSHCN Screener in 2001, the National Survey of CSHCN in 2003, and the 2001–2004 Medical Expenditures Panel Surveys, the prevalence of CSHCN has ranged from 12.8% to 19.3%.2 Multiple studies using data from these surveys have shown that CSHCN use more resources, have greater unmet health care needs (both primary and specialty care), higher costs, and inadequate insurance. Children with the highest functional disability were 50% less likely to have adequate insurance as are minority and poor families. In addition, there has been an increase in health care costs borne by families, particularly when privately insured.3-5

A small, but growing, subset of CSHCN can be described as “medically complex and fragile” with chronic conditions requiring technology assistance. In 1987, the former US Office of Technology Assistance defined the medically fragile, technology-dependent child as “one who needs both a medical device to compensate for the loss of a vital body function and substantial ongoing nursing care to avert death or further disability.”6 The continued growth of medical knowledge and technology has led to an increase in the number of technology-dependent children living longer and living at home with technological assistance. This fact, coupled with the lack of home nursing care and the increased expertise of parents in providing health care, has made the dual requirement of technology and nursing an inadequate definition of medical fragility. However, no new standard definition of medical complexity and fragility has been established.7,8 Common characteristics of medically complex and fragile CSHCN include chronic conditions requiring multiple medical and nonmedical services, the use of technological supports, and the need for effective care coordination. The level of and time involved in care coordination depend both on their medical complexity and fragility and a variety of nonmedical factors that impact access to needed services (Table 124-1). This chapter presents an approach to care coordination and describes some of the common technological supports required to sustain life and optimize function in medically complex and fragile children with chronic conditions.

Table 124-1. Factors Influencing the Need for Care Coordination

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