• Journal Articles

    Improving Health Care Transitions for Children and Youth With Special Health Care Needs

    Health care transitions from pediatric to adult health care remain a challenge for children and youth with special health care needs, their families, and their clinicians. While literature on this topic has expanded, gaps remain in how to improve health outcomes during transitions. This article describes the current state of transition research and recommendations for future investigation.

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 3: Feeding Intolerance

    This is the third 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. Co-leads Dr. Eyal Cohen and Dr. Catherine Diskin were joined by Sarah Tueller, Patricia Dean and Dr. Marialena Mouzaki to discuss Feeding Intolerance.

  • Event and Webinar Recaps

    COVID-19 Behavioral Health Policies Affecting CYSHCN: What to Keep, Modify, or Discard?

    In this webinar, a panel of experts discussed the regulatory flexibilities that had a positive impact on the behavioral health of CYSHCN, reflected on the unique stressors and behavioral health needs of this population, and highlighted policy recommendations to address those needs from the report COVID-19 Policy Flexibilities Affecting Children and Youth with Special Health Care Needs: What to Keep, Modify, or Discard?

  • Event and Webinar Recaps

    Pediatric Complex Care Seminar Session 2: Irritability and Pain

    This is the second 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. Julie Hauer, Caitlin Scanlon, Sarah Tueller, and Shawnda Hicks discussed Irritability and Pain.

  • Event and Webinar Recaps

    Knowledge Gaps in the Care of Children with Medical Complexity and Neurodisability

    This inaugural session of the 10-part Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (CMC) and Disabilities (C6) seminar series provided an overview of the topics that will be delivered throughout the series. Co-leads Dr. Eyal Cohen and Dr. Catherine Diskin were joined by family representatives to speak on a 2020 international study that prioritized key clinical research questions that will be the topic for each session.

  • Research & Reports

    Family Engagement and California’s Whole Child Model: Lessons Learned from the Implementation of Family Advisory Committees

    California's Whole Child Model (WCM) marks the first time Medi-Cal managed care health plans have been statutorily required to create Family Advisory Committees (FACs). This case study captures the lessons learned in the establishment and management of the FACs and offers recommendations to help ensure that FACs are effective over time.

  • Issue Briefs

    Telemedicine and Pediatric Home-based Palliative Care: Next Steps for Policy and Practice in California

    Pediatric palliative care is an underappreciated resource that can provide an additional layer of support for children with medical complexity and their families. Often misunderstood as end-of-life care, pediatric palliative care aims to improve quality of life for children and families. A shift in policy in California has expanded eligibility for pediatric palliative care, but there is lack of clarity on how the new services should be implemented. One way to improve access to pediatric palliative care is using telemedicine. This brief aims to identify the current state of pediatric palliative care in California and provides recommendations to improve implementation of pediatric palliative care and develop new models that better integrate telemedicine into care delivery.

  • Research & Reports

    Engaging Youth with Special Health Care Needs and Families of Children with Special Health Care Needs: Recommendations for Medicaid Agencies

    Meaningful partnerships with enrollees can help Medicaid agencies better serve youth and families, including those with special health care needs in meeting their goals for improved health and well-being. The Center for Health Care Strategies conducted a survey to understand engagement strategies Medicaid agencies are using across the country. This report highlights key findings from the survey and interviews, including engagement themes, challenges, and recommendations.

  • Issue Briefs

    Helping Families Obtain Durable Medical Equipment and Supplies Through the California Children’s Services (CCS) Program - Updated

    Children with special health care needs often endure unnecessarily long and sometimes harmful delays in accessing essential medical equipment and supplies. In California, the source of these delays often can be traced to the complex and overlapping patchwork of government programs designed to address children’s needs. An updated guide for legal advocates to assist families in navigating the CCS program is now available.

  • Research & Reports

    The Achievable Foundation: A Case Study

    Many primary care providers lack the time, experience and resources necessary to provide high-quality care for children with intellectual and developmental disabilities and they may not practice in settings that integrate the extensive social and behavioral health services these children require. A case study documents how a group of parents addressed these challenges by developing a federally qualified health center that, uniquely, is physically co-located with a California Regional Center for Developmental Disabilities. The study provides information to support replication of this successful model.

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