Care coordination has been defined as “a process that links CSHCN to services and resources in a coordinated effort to maximize the potential of children and provide them with optimal health care.”1 The survey addressed the issue of care coordination in two ways. To measure the proportion of CSHCN receiving care coordination services, the survey asked parents whether they received help coordinating their children’s care, whether they needed additional help, and whether they got all the help they needed.

In addition, to measure how well care for CSHCN was coordinated, parents were asked about their satisfaction with the communication among the child’s doctors and other providers, as well as their satisfaction with the communication between health care providers and schools and other systems that serve their children.

For a child to qualify as receiving coordinated care, the parent had to report that they usually received help when needed, and that they were “very satisfied” with communication among providers (when needed) and communication between providers and other programs (when needed). Overall, 42.3 percent of CSHCN received coordinated care by this definition. Of the three elements of coordinated care, the one that is most often met is communication among health care providers; the parents of 62.7 percent of CSHCN report that they are “very satisfied” on this item. However, fewer (53.1 percent) are satisfied with communication between health care providers and other systems, and the parents of 57.8 percent report that they received help coordinating their child’s care when it was needed.

Among the 75.6 percent of CSHCN who needed care coordination, 56.0 percent were reported to receive all needed components of coordinated care. This percentage was highest among CSHCN with private insurance, of whom 60.8 percent received effective care coordination when needed. Among uninsured CSHCN, only 37.7 percent received coordinated care.

1 American Academy of Pediatrics Committee on Children with Disabilities. Care coordination: Integrating health and related systems of care for children with special health care needs. Pediatrics 1999; 104(4):978-981. Return to text.

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