Blog Post Transforming Care for Children with Complex Medical Needs: Emerging Insights from Five HRSA-funded Demonstration Sites

Transforming Care for Children with Complex Medical Needs: Emerging Insights from Five HRSA-funded Demonstration Sites

A recent webinar for the HRSA-funded Enhancing Systems of Care for Children with Medical Complexity initiative shared early insights from the project’s five demonstration sites in their second year implementing innovative care models for improved care coordination and health outcomes for children with medical complexity and their families.
Posted By Maria Mutka, Amanda Brodt, M.P.P., Elizabeth Cope, Ph.D., M.P.H.
Topics Delivering Better Care Health Equity Data Sharing Quality Improvement Access to Care

There are approximately three million children with medical complexity (CMC) nationwide, representing 1-4 percent of all children and 5-6 percent of children covered by Medicaid. CMC are likely to have co-occurring behavioral health diagnoses, with 21 percent having an identified mood disorder, such as anxiety or depression. Some families face additional social determinants of health challenges, including poverty, housing instability, food insecurity or insufficiency, lack of transportation, language barriers, or foster system involvement. To address these needs, AcademyHealth, in partnership with Boston Children’s Hospital, FamilyVoices, the University of California San Francisco, Patient Advocate Foundation, and the American Academy of Pediatrics, is leading a Coordinating Center to support five Health Resources & Services Administration (HSRA)-funded demonstration sites to assist them in meeting their goals to implement, evaluate, and disseminate models of care that improve outcomes for CMC and their families and that lead to improvements in equitable family experience of care integration and total number of CMC served.

Over a five-year performance period, the Coordinating Center will work together with demonstration sites to rigorously evaluate the effectiveness of evolving care models; identify model features that are equitable, sustainable, and scalable; assess outcomes that are meaningful to CMC and their families; and assure all CMC have the potential for optimal health, general functioning/quality of life, and family well-being. The Coordinating Center will advance the program’s objectives in three important ways:

  • Support demonstration sites in their implementation and evaluation of promising equitable models of integrated behavioral health through training, technical assistance, and education;
  • Conduct an independent multi-site evaluation guided by implementation science frameworks to assess the effectiveness of demonstration site activities and identify influential determinants of success.
  • Assist with national spread and sustainability of promising models by leveraging a broad network of stakeholders in equitable, integrated care delivery.
  • Promote the sustainability of enhanced systems of care for CMC by developing tools, resources, and supports to assist in Medicaid and Title V collaboration that advances CMC policy.