• Research & Reports

    Strengthening the Diversity and Role of Patient and Family Advisory Councils: Opportunities for Action

    A national study identified best practices within children's hospitals for strengthening the representativeness of Patient and Family Advisory Councils (PFACs) and for partnering with patient and family advisors on Diversity Equity and Inclusion (DEI) initiatives. This resource highlights six key areas and provides examples from the field to help hospitals improve DEI in PFACs. 

  • Fact Sheets

    Medicaid Paid Family Caregiving for Children

    This document was created in response to an overwhelming demand for resources on paid family caregiving. State laws, policies, and regulations vary greatly across the country. The information provided here reflects paid family caregiving options that are currently available or under consideration. 

  • Issue Briefs

    Working With Community-Based Organizations and Individuals with Lived Experience to Support Continuity of Coverage at the End of the COVID-19 Public Health Emergency

    The unwinding of the COVID-19 public health emergency means states must redetermine eligibility for millions of children and families. Partnering with community-based organizations, family-led organizations, and individuals with lived experience to engage their communities can help support efforts to ensure continuity of coverage. This issue brief provides recommendations for states work with these organizations to mitigate coverage loss.

  • Issue Briefs

    Maintaining Telehealth Access to Medicaid-Covered Pediatric Services After the End of the COVID-19 Public Health Emergency

    This issue brief provides an overview of the telehealth response to COVID-19, outlines temporary state policy flexibilities that improved access to pediatric telehealth services, and highlights opportunities for permanent state policy expansions to maintain access to pediatric telehealth services within Medicaid now that the COVID-19 public health emergency has ended.

  • Journal Articles

    Family Partnership in Continuing Medical Education: A Collaborative Experience

    Family involvement in the education of clinicians has the potential to improve patient-clinician partnerships in care. Meaningful partnership between families and clinicians requires intentional planning and a shared understanding of goals. This article describes one example, the seminar series Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (C6), a continuing medical education endeavor jointly designed and implemented by families and clinicians.

  • Journal Articles

    Family Engagement at the Systems Level: A Framework for Action

    The value of incorporating families’ lived experience in systems-level activities is well understood by health care providers and policymakers. However, little detail exists in the literature about what information and supports are needed to assist families and professionals throughout the process of engaging with families. In this article, researchers present a framework for family engagement grouped into four action-oriented domains: commitment, transparency, representation, and impact. Adoption of this framework by child-serving entities will support a sustainable, equitable, and meaningful process in which families can contribute to policy development and improvement.

  • Event and Webinar Recaps

    Paid Family Caregiving for Children with Medical Complexity and Disabilities

    Pediatric home health care is in crisis. Children with medical complexity require a substantial amount of medical care and activities-of-daily-living support to live at home. However, due to a shrinking pool of available home health care workers and narrow state eligibility requirements for services, most of their care is increasingly delivered by families without pay. In response, the option to pay family caregivers for their children’s medical labor is gaining national traction. This webinar provided a brief overview of laws that govern care for this population and specific models of paid family caregiving, and how they have been recently expanded in several states. Speakers explored a policy solution to pay families to provide home health care to their children with medical complexity and disabilities.

  • Research & Reports

    Access to Pediatric Specialty Care in California: Results of the Children’s Specialty Care Coalition 2022 Member Survey

    When access to assessment and routine care by a pediatric specialist is delayed, patients may receive inappropriate or insufficient treatment, experience complications, and have potentially avoidable emergency department visits and hospitalizations. This report outlines the findings of a survey of the members of the Children’s Specialty Care Coalition and provides a snapshot in time of access to pediatric subspecialty care in California.


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