Publications

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 caregiving for children with special health care needs.

This is the sixth 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 will be joined by Dr. Laurie Glader, Dr. Nathan Rosenberg, Maureen Benschoter, and Sarah Perkins to discuss disorders of tone.

Researchers worked with family caregivers to incorporate their expertise on caregiving and lay a better foundation for successful integration between health care settings, family caregiving, and community supports for families of children and youth with special health care needs (CYSHCN). This article identifies high-priority gaps in CYSHCN caregiving research and proposes research questions that could increase the evidence-base for understanding of the work of family caregivers and how best to support them.

This guide contains a step-by-step approach for state Medicaid and managed care organizations as well as commercial payers interested in starting a value-based payment initiative around pediatric-to-adult transitional care. Each of the steps includes several issues and strategies to consider, tips, and examples.

This is the fifth 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 will be joined by David Fox, Jill McCormick, and Brennan McCormick to discuss shared decision making in the care of children with medical complexity.

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.

In this webinar, authors discuss their article titled Improving Health Care Transitions for Children and Youth with Special Health Care Needs. Speakers highlight the health care transition process for adolescents and young adults with special health care needs, describe study findings, and reflect on the implications of their recommendations.

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.