Publications

Edward Schor, MD, who for the past eight years has led the Foundation’s work to improve the system of care for children with special health care needs, will retire July 2. Here he reflects on the Foundation’s progress and how best to continue efforts to create a system that works for children and families.

An analysis of workforce gaps, payment models, and policy challenges unique to home health care for children and youth with medical complexity, including legal challenges brought by families because of home nursing shortages. The authors propose a portfolio of solutions to address the current failures.

A new report from Public Counsel confirms the continued presence of a longstanding issue in California—disparities in purchase of services for ethnic and racial groups served by the state's 21 regional centers.

This briefing provided an overview of the mental health services to which CSHCN are entitled, highlighted current state policy priorities, and shared ways to engage in advocacy efforts.

Like most 10-year-olds, Mia Vasquez loves to spend the day at a playground. Unlike most, Mia requires accessible play structures, which are not available near her home. Her parents felt frustrated by the distances they had to drive, and decided to take on the challenge of persuading their home town to construct an accessible playground. Through Project Leadership, the Family Voices of California’s advocacy training program, they developed the skills to mobilize the community support and funding needed to make Mia’s dream playground a reality. Read about their journey.

It’s probably next to impossible to compile a complete list of services required by children with complex conditions and their families. However, this new classified grouping of services may be useful in care mapping, care planning, creating resource databases, and developing referral systems. 

Learn about an innovative methodology using system-level data to identify children with health complexity, that is based on medical and social complexity, and how it is improving quality of care in Oregon.

When it comes to quality improvement efforts in health care, nurses traditionally have been “brought along for the ride.” A new project aims to put nurses in the driver’s seat. An eight-hospital coalition brings together a multidisciplinary team at each hospital to create and test innovative discharge planning initiatives. Each team is led by a nurse, with the goal of establishing nurses as leaders with the confidence to generate change.

Children with health complexity face unique medical and social factors that impact their health and engagement of health care services. Health systems play an important role in addressing both factors to build health and resilience.