• Issue Briefs

    The Future of Pediatrics: Redefining Chronic Care

    “Chronic” is a way of providing health care that is too often limited to patients with chronic medical conditions. In a new issue brief, Edward Schor, MD, proposes a definition of chronic care and describes how it should be the care model used not only for children with special health care needs but also for well-child care. Both are intended to promote lifelong health.

  • Event and Webinar Recaps

    A New Approach to Assessing Family Engagement in Health Care Systems

    Health care providers, payers, and systems serving children, youth and families increasingly focus on family engagement as a strategy to improve health care delivery, enhance consumer and provider satisfaction, and reduce costs. Assessing how well an organization or agency is engaging families is a critical step in achieving these goals. Learn about a framework for assessing family engagement in systems change, models of success, and discover common barriers to incorporating meaningful family engagement in systems-level initiatives.

  • Fact Sheets

    Five Top Tips for Engaging Families in Advisory Roles: Advice from a Family Leader

    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.

  • Fact Sheets

    Five Top Tips for Engaging Families in Advisory Roles – Advice from a Family Leader

    The perspective and expertise of parents and caregivers are invaluable in efforts to improve the health care system for children with special health care needs. But how can service and policymaking organizations involve family members in Family Advisory Committees and maintain their interest and participation? A veteran parent offers her thoughts and tips.

  • Issue Briefs

    Parent Survey: Most Valuable Components of Medical Home

    The evidence is clear that care in a pediatric medical home results in improved health outcomes, increased family satisfaction, and decreased cost of care. A statewide survey queried California parents on which components of a medical home they most value, and how satisfied they are with the care their child receives. 

  • Research & Reports

    Achieving Care Integration for Children with Medical Complexity: The Human-Centered Design Approach to Care Coordination

    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.

  • Research & Reports

    The National Standards for CYSHCN: A Compendium of National Data and Quality Measure Sets

    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.

  • Event and Webinar Recaps

    A Conversation on the Effect of Payment Models in Children’s Health Care

    Proposed changes in health care payment, from fee-for-service to alternative, risk-sharing payment models, can have a substantial impact on health services for children, especially those with complex care needs. In addition, tying payment to value can increase use of ambulatory and preventive services and encourage creative outreach. However, abrupt changes can interrupt continuity and reduce access to care. 

  • Event and Webinar Recaps

    A Conversation on Ethical Considerations for a Fair and Effective Health Care System

    What ethical considerations should guide the design and evaluation of systems of care for children with medical complexity? There are inevitable tradeoffs that any complex health care system must confront when attempting to achieve multiple worthy goals, from benefitting individual patients and families and securing fair distribution of benefits across populations, to operating in a manner that is transparent and free from conflicts of interest. 

  • Insights

    Family-to-Family Health Information Centers: Pathways to Partnerships

    Whether it’s facing the shock of a first diagnosis or responding to the many challenges along the way, parents of children with special health care needs often find that their most highly valued source of support is an experienced and knowledgeable parent who has navigated the same path. But where to find such a parent? Family-to-Family Health Information Centers may provide the answer.

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