For families of children who have complex medical conditions, equal partnership in multiple levels of care is essential to positive outcomes for their children. A recent article Families of Children With Medical Complexity: A View From the Front Lines provides an overview of care management from the perspective of parents who have children with complex medical conditions.
The authors discuss the role of parent leaders in the development and implementation of some of the key laws and policies that shape care for children with medical complexity, the unique perspective of parents who “see across boundaries and silos” in our fragmented health care system, and the need to recognize families as essential members of the care team and self management support system.
Engaging with families is vital to transforming the health care system and positively impacting the life course of vulnerable populations. Families have extensive experience in partnering with professionals to improve systems of care, are organized and connected across the country, and stand ready to assist at every level of next efforts for improvement.
With support from the Lucile Packard Foundation for Children’s Health, the article was published by the journal Pediatrics in a special Supplement on complex care, Building Systems that Work for Children with Complex Health Care Needs.
Learn how to meaningfully involve families at every level of health care systems and engage them as critical partners in designing policies that will improve care for all children. Join the Lucile Packard Foundation for Children’s Health for a lively discussion on the article, Families of Children With Medical Complexity: A View From the Front Lines. The lead author, Rylin Rodgers, Director of Public Policy at the Association of University Centers on Disabilities, and experts in the field Richard Antonelli, MD and Ruth E.K. Stein, MD, FAAP will review the article’s key content and share ways to strengthen family engagement. The discussion will be moderated by Christopher Stille, MD, MPH. We suggest attendees read the article prior to the event. Audience Q&A is highly encouraged. Attendees can listen via web or phone. Learn more and register.
Allison Gray is a program officer at the Lucile Packard Foundation for Children’s Health