• Research & Reports

    Examining Racial and Ethnic Inequities Among Children Served Under California’s Developmental Services System: Where Things Currently Stand

    An updated report by Public Counsel outlines persistent service funding disparities between racial and ethnic groups of children in California’s regional center system. The report evaluates the outcomes of a disparity reduction program established by the state in 2016 and urges the state’s legislative and executive administration leadership to take action on the identified recommendations for addressing the system’s ongoing problems.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 9: Aspiration

    This is the ninth seminar of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series. Kathy McClelland, Katy Peck, and Dr. Christpher Russell discuss aspiration in the care of children with medical complexity.

  • Journal Articles

    PediHome: Development of a Family-Reported Measure of Pediatric Home Healthcare Quality

    No validated tools currently exist to measure pediatric home health care quality. This article outlines the development and testing of PediHome, a content-valid family-reported survey measure of home health care quality for children with medical complexity. PediHome can be used to identify deficits in timely access to care, overall home health care quality, and specific aspects such as confidence in nursing care provided.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 8: Sleep

    This is the eighth seminar of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series. Kate Robinson of Family Voices will be joined by Kate Holler, Sarah Perkins, Dr. Caroline Okorie, and Dr. Shelly Weiss to discuss sleep.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 7: Polypharmacy

    This is the seventh seminar of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series. Dr. Eyal Cohen will be joined by Sarah Carlson, Kasey Dudley, Dr. James Feinstein, and Luke Orth to discuss polypharmacy.

  • Journal Articles

    Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs

    Children and youth with special health care needs (CYSHCN) have a range of medical, educational, and support service needs to achieve optimal health and wellness. Principles of care for CYSHCN have been well described, but the literature is lacking particularly on implementation and integration of care across different settings and systems. The authors identify four primary areas of investigation that could further understanding of how to adopt and spread principles of care for CYSHCN.

  • Journal Articles

    Research on Family Health and Children and Youth With Special Health Care Needs

    Health systems are designed to support children and youth with special health care needs (CYSHCN) but do not often consider the health and well-being of their family. Despite a growing body of literature, substantial gaps remain in understanding the impact of caregiving on family health and well-being and the provision of support for families. This article describes the current state of research on the health of families of CYSHCN and provides recommendations for future investigation.

  • Journal Articles

    Moving from Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs

    Children and youth with special health care needs (CYSHCN) are high utilizers of health care resources and their unique needs merit targeted consideration. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and the life course. Spending for children's health is an investment in their growth and development with long-term outcomes at stake. This paper discusses high-priority research topics in the area of health care financing for CYSHCN including what is currently known and important knowledge gaps.

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