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In 1997, the Maternal Child Health Bureau adopted the term children with special healthcare 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 generally required by children. The prevalence of CSHCN ranges from 12% to 19%. Children with special healthcare needs use more resources and have greater unmet healthcare needs (both primary and specialty care), higher costs, and inadequate insurance. Compared to those without special healthcare needs, there is an increase in healthcare costs borne by families of CSHCN, particularly those who have private insurance. Among CSHCN, poor and minority children are at higher risk for inadequate insurance, as are children with higher levels of functional disability.

A small, but growing, subset of CSHCN can be described as children with medical complexity (CMC), who have medical fragility and intensive care needs that are not easily met by existing healthcare models. Common characteristics of the CMC population include chronic conditions requiring multiple hospital and office-based medical and nonmedical services; a reliance on medical equipment and technology, multiple medications, specialized surgeries, and other therapies; and the need for effective care coordination. While there is not yet 1 commonly accepted operational definition of CMC, they likely comprise approximately 5.8% of all US children insured by Medicaid and account for 34% of Medicaid spending for all children. Common frameworks for clinical and research definitions include the World Health Organization’s framework for classifying impairments, disabilities, and handicaps; the International Classification of Diseases (ICD)-based complex chronic condition classification system; and the proprietary Clinical Risk Groups maintained by 3M Health Information Systems. The level of and time involved in care coordination for CMC depend both on the medical complexity and fragility, and on a variety of nonmedical factors that impact access to needed services. This chapter presents an approach to care coordination for medically complex and fragile children with chronic conditions.


Medical complexity and fragility caused by chronic disease affect the children themselves, families, communities, the healthcare system, and society at large. Families, providers, and organizations seeking to improve health care have identified multiple barriers in providing effective care coordination for CMC. Caregivers face constant stress as they try to balance work and family life with the needs of their sick child. A child’s tenuous health status often means frequent inpatient and outpatient healthcare visits; in order to remain home, families and home healthcare workers often must maintain a home medical environment akin to an intensive care unit (eg, ventilator equipment, monitoring devices, suction equipment, oxygen supplies). Identifying and negotiating the maze of community- and hospital-based services, obtaining insurance coverage, and accessing social entitlement programs present a Herculean task.

Community services are often uncoordinated, ...

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