Publications

A three-day workshop explored the challenges and opportunities related to building an optimal integrated care system for people with intellectual and developmental disabilities. Speakers discussed models of care, workforce issues, financing and payment for care, and more.

This is the fourth 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 Shawnda Hicks, Tina Andrews, and Dr. Antonio Hardan to discuss Behavior and Child Mental Health.

Researchers and family leaders from across the country partnered to develop a national research agenda focused on improving the health care system for children and youth with special health care needs. This webinar focuses on research priorities in the health care transition process for adolescents and young adults 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.

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.

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?

A national study explored the prevalence and characteristics of Patient and Family Advisory Councils (PFACs) in children’s hospitals. This report highlights ten key learnings from the study, and provides practical guidance about strengthening partnerships with families and patients.

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.

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.