Publications

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.

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.

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.

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.

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.

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.

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.

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

The Department of Family-Centered Care at Lucile Packard Children’s Hospital, Stanford, launched a Family Food Support Program in May 2020. Learn about their success and plans for the future.

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.