Publications

Straight talk from 52 parents highlights the limitations of the current system of care for children with special health care needs and their families. A new report summarizes findings from 10 focus groups in which family members discussed what their lives are like, how well their families’ needs are being met, and how the health care system could be improved. The report describes four themes that emerged, and offers dozens of direct heartfelt quotes from focus group participants.

As children with chronic medical problems approach adulthood, pediatricians expect their maturing patients to transition to adult health care. However, that process does not always go smoothly. In a new article, Edward L. Schor, MD, proposes a novel form of collaboration between physicians, based on the patient’s condition rather than age.

As the "May revise" of the state budget gets under way, the California Budget and Policy Center has released a report on the size and scope of the state's public health care coverage and programs for children. The study, funded by the Lucile Packard Foundation for Children's Health, also notes key opportunities and challenges the state faces in promoting children's health. A companion piece provides a timeline of major policy choices made in the past several years that have shaped the state's health system for children.

Self-management practices are well established in adult medicine, but are not as common in pediatric care. This article provides insights into how pediatric practices can help families with children's care at home.

Increasing numbers of children with complex medical conditions are living at home. An upcoming article in the May 2015 edition of Pediatrics provides insight into how pediatric practices can offer “self-management” supports to increase families’ skills and confidence in coping with chronic conditions on a daily basis.

In a 2012 survey, families of children with special health care needs identified care coordination as their top priority. A new fact sheet provides a concise summary of the key elements necessary for a quality system of care coordination.

In an ideal world, children with complex conditions would be served by a single, integrated health and developmental service system. In the absence of such a system, Edward L. Schor, MD, proposes creation of state-authorized Assessment Centers to assess children’s needs, create a care plan, make referrals and provide follow-up reviews.

Life Course Theory, which promotes a life-span approach to an individual’s health, is taking hold in adult medicine, but adoption has been slow in pediatric practices. This paper proposes a framework to help pediatric practices become life course settings for children with special health care needs.

Pediatric care coordination is more talked about than done, given the challenge of providing “a patient- and family-centered, assessment-driven, team-based activity designed to meet the needs of children and youth while enhancing the caregiving capabilities of families.” Very ambitious. It’s not surprising then that families, who bear the brunt of absent or failed efforts to coordinate care, find it necessary to step in as the principal care coordinator. Here are some ideas of how to support them.

In an essay that includes her fantasy of an ideal Boot Camp to train parents to be advocates, Juno Duenas, long-time executive director of Support for Families, suggests that parents become the partner they would like to have: informed and educated, with healthy inner resources and a really good sense of humor.