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Building Systems that Work for Children with Complex Health Care Needs: The Next Steps

PALO ALTO – Confusion continues to reign within the realm of health policy, and despite the reauthorization of the Children’s Health Insurance Program, children’s health care is once again taking a back seat.

On the plus side, some of the shortcomings of our current system are coming into greater focus, and fundamental questions about people’s right to health care and how to control health care costs are being voiced. On the other hand, the social determinants of health and the social consequences of ill health, both of which result in health disparities, have not entered the debate. These issues are of special concern to vulnerable populations, especially developing children and children with complex health care needs.

In an effort to bring attention to this growing issue, we are pleased to sponsor the March 2018 issue of the Pediatrics supplement: “Building Systems that Work for Children with Complex Health Care Needs.” The articles in the supplement feature writing from leading health care providers, family representatives, advocates, policymakers, and researchers. Our hope is that these articles will help to clarify some of the difficult, systemic issues and challenges affecting health care for these children, and point the way toward their resolution. Click the links below to read the articles:

Families of Children with Medical Complexity: A View from the Front Lines

Status Complexicus? The Emergence of Pediatric Complex Care

Models of Care Delivery for Children with Medical Complexity

Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?

Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions

Protecting Rights of Children with Medical Complexity in an Era of Spending Reduction

Ethical Framework for Risk Stratification and Mitigation Programs for Children with Medical Complexity

Evolving Federal and State Health Care Policy: Toward a More Integrated and Comprehensive Care Delivery System for Children with Medical Complexity

The health and well being of these most vulnerable of children are sentinel indicators of the effectiveness of the systems on which they depend. These children have significant health problems that affect multiple organ systems, limit functioning, sometimes require technological assistance, and incur high health care use. Consequently they are the most likely to manifest adverse outcomes when health and/or social services systems fail. Among the approaches to controlling costs is a focus on the small group of individuals whose medical care accounts for a large portion of health care costs. This group, excluding older adults in their final years of life, tends to have complex medical and social conditions. Perhaps because most children seem to be in good health, or because those who do not are few in number (and thus, cost relatively little), insufficient attention is paid to children with complex needs.

By reputation, although absent much evidence, hospital and subspecialty care for children in the United States is world class. Ironically, the availability of technology and advanced care processes is contributing to the increased number of children living with chronic and complex health conditions. Yet even among tertiary- and quaternary-care settings, there is substantial variation in who receives what care, how much it costs, and the outcomes achieved. Outside those settings, shortcomings in services for children with special health care needs are even more apparent; access to comprehensive, coordinated, and family-centered care is the exception rather than the rule.

Most of the problems for children with chronic and complex needs in gaining access to quality health care are systemic, reflecting the additional time, skills, staffing, support, and payment that these children’s team-based care requires. Equally troubling is that many other problems arise from the longstanding fragmentation of services among physical and mental health, education, developmental disability and social services, and the failure to coordinate among them. Any family with a child with special health care needs can articulate the burden this places on their ability to care for their child.

The goal of the Lucile Packard Foundation for Children’s Health is to improve the US system of care for children with chronic and complex health care needs. Our work is intended to ensure that all children have access to high-quality, culturally competent, family-centered health care when and where they need it, provided through a delivery system that recognizes their unique physical and developmental needs and potential.

Throughout the year we will be hosting a series of online discussions with supplement authors and experts from the field. Details will be coming soon. Together we can take the next step in building systems that work for children with complex health care needs.


About the Foundation: The Lucile Packard Foundation for Children’s Health is a public charity, founded in 1997. Its mission is to elevate the priority of children’s health, and to increase the quality and accessibility of children’s health care through leadership and direct investment. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families. The Foundation works in alignment with Lucile Packard Children’s Hospital Stanford and the child health programs of Stanford University.