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Family Engagement in Medicaid: A 50-state Scan of Efforts to Meaningfully Engage CSHCN Families in Medical Policymaking

Organization: Center for Health Care Strategies

Primary Contact: Courtney Roman

Grant Amount: $127,135 for 18 months

Date Awarded:


Medicaid is the single largest insurer of children with special health care needs, and thus sets the standards and expectations for their care for the practice community. Federal regulations require state Medicaid programs to have advisory committees of key stakeholders. Anecdotal evidence suggests that there is great variation in the extent and ways in which state Medicaid programs engage CSHCN beneficiaries in their work designing policies and programs, but no reliable data are available. This grant, to the Center for Health Care Strategies, will help identify and document the full range of activities that state Medicaid agencies are undertaking to engage pediatric beneficiaries and families. The report will outline promising practices and areas for improvement, and will provide a set of recommendations on how Medicaid and other state agencies can improve their family engagement practices.

Related Resources

Meaningful partnerships with enrollees can help Medicaid agencies better serve youth and families, including those with special health care needs in meeting their goals for improved health and well-being. The Center for Health Care Strategies conducted a survey to understand engagement strategies Medicaid agencies are using across the country. This report highlights key findings from the survey and interviews, including engagement themes, challenges, and recommendations.