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Children with Medical Complexity (CMC), a subgroup of children with chronic health problems, make up a small but especially vulnerable population in California. These children are characterized by their dependence on multiple pediatric subspecialists and often on medical technology; they are medically fragile and are particularly dependent on care coordination to maintain stable health. Although few in number, they account for a disproportionate share of health care costs for children. This project set out to understand how CMC are currently receiving health care, what ideal health care might look like, and what the barriers to obtaining optimal care might be.

Eleven primary care programs, most associated with children’s hospitals, have established programs for this population, and these programs are the focus of this report. Chief medical officers and program directors from each facility were interviewed about the organization and operation of their clinics that care for CMC. The study concluded that specialized primary care clinics, operating as team-based medical homes, are a feasible and valuable component of a comprehensive system of care for children with complex care needs. They are likely to be cost-saving to the health care system overall, and undoubtedly provide higher quality care and greater patient/family satisfaction. However, the potential contribution of these clinics is not well appreciated by payers and sometimes not by the institutions with which they are affiliated. Children’s medical centers, especially those desiring to be part of an organized delivery system for children with chronic health care problems, should be developing and supporting complex care clinics, and advocating for changes in health care reimbursement and financing that would help support the operation of these clinics. A collaborative, regional approach to team-based primary care for CMC would be a major achievement and a major contribution to the health and well-being of these highly vulnerable children.