• 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.

  • Event and Webinar Recaps

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

    In this webinar, speakers discussed their experiences with how telehealth flexibilities have affected CYSHCN, families, providers, and health systems. They reflected on what is important to retain and how to apply lessons learned moving forward. We suggested attendees read the report COVID-19 Policy Flexibilities Affecting Children and Youth with Special Health Care Needs prior to the event.

  • Research & Reports

    COVID-19 Policy Flexibilities Affecting Children and Youth with Special Health Care Needs

    In response to the COVID-19 pandemic, states rapidly established new funding mechanisms and implemented emergency regulations, while providers deployed innovative technologies to connect with their patients. This report identifies key policy flexibilities enacted during the public health emergency and summarizes stakeholders’ perspectives about the impact of the flexibilities on CYSHCN and their families and providers

  • Event and Webinar Recaps

    CARE_PATH for Kids: A Family-Centered Approach to Shared Plans of Care for Children with Special Health Care Needs

    Shared care-planning for children with special health care needs (CSHCN) must start with a comprehensive view of the child and family and be anchored to their unique strengths, needs, context, and aspirations. The Child and Adolescent Health Measurement Initiative designed and piloted the CARE_PATH for Kids, a novel three-step, family-centered approach to the process of creating Shared Plans of Care (SPoC) for CSHCN that complements existing models in the field.

  • Research & Reports

    Prevalence of Risk Factors for Severe COVID-19 Disease: Implications for Children and Youth with Special Health Care Needs

    Many children and youth with special health care needs (CYSHCN) have conditions that put them at risk for severe COVID-19 illness. Identifying CYSHCN with risk factors for severe COVID-19 illness is paramount to assist strategic planning efforts for vaccine distribution. This report covers the health conditions that may put these children at risk, including how the conditions may be used to prioritize vaccine distribution, how to identify the conditions using health care claims, and how estimating the prevalence of these conditions can help ensure that children and youth receive the care they need during the pandemic.

  • Issue Briefs

    Implementación del Modelo del Niño en su Totalidad de CCS

    El Sistema de Servicio Integrado Regional para Niños (CRISS), una colaboración de organizaciones de apoyo familiar, hospitales pediátricos y grupos de proveedores, y 28 programas CCS del condado en el norte de California, ha monitoreado la implementación del Modelo de niño integral e identificado estrategias potenciales para abordar problemas y preocupaciones planteadas por familias, planes, proveedores y agencias del condado de CCS.

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