The Care Coordination Conundrum and Children and Youth with Special Health Care Needs

In a 2012 survey, families with children with special health care needs (CSHCN) identified care coordination as their top priority. At its best, care coordination is a covered service—a command center, of sorts—that addresses the interrelated medical, social, developmental, behavioral, educational, and financial needs of children and their families. But there is great confusion over who is responsible for providing care coordination services, who should pay for them, and how to get reimbursed for such services. As a result of this inefficiency, CSHCN and their families experience even greater difficulties. This report, funded by the Lucile Packard Foundation for Children’s Health, discusses why care coordination has been insufficiently financed and reimbursed to date, and what can be done to address these challenges.