Sharon Silow-Carroll, Gretchen Hagelow
There are few organized systems of referral and care coordination for children and families identified with early developmental delays, complex medical conditions, and difficulties negotiating the medical and related support systems, but some promising models are emerging. This report summarizes lessons from programs in five states that refer families to appropriate community or state programs, help coordinate their care, provide support and follow-up to ensure they receive needed services, and provide a feedback loop to primary care providers. Common features of successful programs include: maximizing efficiencies through shared resources, leveraging and partnering with other organizations, in-depth involvement with pediatric practice staff, appropriate training and tools, flexible program design, measurement and evaluation, and a holistic approach to care. The findings point to a need for greater identification and dissemination of best practices and technical assistance, stable funding sources, and integration of care coordination into new models of health care financing and delivery.