Publications

Children with medical complexity (CMC) face unique medical and social factors that affect their health and access to health care services. Health systems play an important role in addressing both factors. The Oregon Pediatric Improvement Partnership and Kaiser Permanente Northwest have joined forces to share their approaches to using system- and practice-level data to better identify appropriate care coordination and health management supports for CMC.

How do organizations and agencies serving children with special health care needs recruit family members to serve on an advisory committee? How do they encourage commitment to their role? How do they maintain engagement with them? This fact sheet provides recommendations for meaningfully engaging a group of family advisors.

Taking a fresh look at the perennial issue of how to provide effective care coordination, a team of researchers has reimagined the process using human-centered design, an approach that focuses on the users’ needs. The goal is to integrate all sectors of care and support – medical, educational, financial and other services – so that care can be delivered effectively and better meet the needs of children, families, providers, and payers.

Quality measurement is a critical component of state health programs, including Medicaid and State Title V CYSHCN programs. This new compendium highlights quality measures aligned with key elements for a system of care for children and youth with special health care needs, as outlined in the National Standards of Care for Children and Youth with Special Health Care Needs. This tool compiles data and quality measures from applicable and widely used measure sets. Identification of data and quality measures can help states evaluate how well their system of care is serving CYSHCN.

The critical handoff from pediatric to adult care providers often fails to occur, in part because no payment mechanisms are available to either practice. To address this, the National Alliance to Advance Adolescent Health convened a multidisciplinary group of stakeholders to develop recommendations for pediatric-to-adult transition value-based payment (VBP) strategies and quality measures. Their findings are outlined in this new report.

Team-based health care is a key component of the Chronic Care Model, which has shown to be successful for adults with chronic conditions.  As the number of children with chronic conditions grows, and payers seek innovative ways to increase efficiency and effectiveness, it may be time to invest in restructuring pediatric practice to promote team-based care. 

Although federal programs are a major source of support for children with special health care needs and their families, the state in which a family lives can heavily influence whether the child has access to quality health care and other needed services. State and local statutes and regulations often determine eligibility criteria and requirements for receiving care. A new report from Child Trends, funded by the Lucile Packard Foundation for Children’s Health, offers a framework for state agencies and other stakeholders to assess and improve how a state provides care across health, education, justice and other systems.