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Copyright 1996 by the National Academy of Sciences. All rights reserved.
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Board on Children, Youth, and Families
SHELDON H. WHITE (Chair),
Department of Psychology, Harvard University
JACK P. SHONKOFF (Vice Chair),
Heller Graduate School, Brandeis University
DAVID V.B. BRITT,
Children's Television Workshop, New York City
Center for Demography and Ecology, University of Wisconsin
FERNANDO A. GUERRA,
San Antonio Metropolitan Health District. Texas
Department of Maternal and Child Health, Johns Hopkins University
ALETHA C. HUSTON,
Department of Human Ecology, University of Texas at Austin
Department of Pediatrics and Child Health, Howard University Hospital
Office of Population Research, Princeton University
Harris Graduate School of Public Policy Studies, University of Chicago
Institute of Health Policy Studies and Department of Pediatrics, University of California, San Francisco
The Concord Coalition. Washington, D.C.
JULIUS B. RICHMOND,
Department of Social Medicine, Harvard University Medical School
TIMOTHY M. SANDOS,
City Council, Denver, Colorado
Graduate School of Education, University of California, Los Angeles
Women's Health Program, Department of Family Health Care Nursing, University of California, San Francisco
Project Hope, Bethesda, Maryland
EVAN CHARNEY (Liaison),
Council, Institute of Medicine
RUTH T. GROSS (Liaison),
Board on Health Promotion and Disease Prevention. Institute of Medicine
ELEANOR E. MACCOBY (Liaison),
Commission on Behavioral and Social Sciences and Education
DEBORAH A. PHILLIPS, Executive Director
ANNE BRIDGMAN, Program Officer for Communications
Board on Health Promotion and Disease Prevention
DONALD R. MATTISON (Chair),
Graduate School of Public Health, University of Pittsburgh
M. JOYCELYN ELDERS,
University of Arkansas for Medical Sciences
DOUGLAS C. EWBANK,
Population Studies Center, University of Pennsylvania
CLAIRE M. FAGIN,
School of Nursing, University of Pennsylvania
PAUL S. FRAME,
Tri-County Family Medicine, Cohocton, N.Y.
ROBERT E. FULLILOVE,
Columbia University School of Public Health
KRISTINE M. GEBBIE,
Columbia University School of Nursing
Department of Community and Mental Health, School of Nursing, University of North Carolina, Chapel Hill
ANTONIO M. GOTTO, JR.,
Department of Medicine, The Methodist Hospital, Baylor College of Medicine
ELLEN R. GRITZ,
Department of Behavioral Science, University of Texas, M.D. Anderson Cancer Center
RUTH T. GROSS,
Stanford University (Emerita)
RICHARD B. JOHNSTON, JR.,
Yale School of Medicine and The March of Dimes Birth Defects Foundation
Department of Maternal and Child Health, Harvard School of Public Health
RICARDO F. MUNOZ,
Department of Psychiatry, University of California, San Francisco General Hospital
ELENA O. NIGHTINGALE,
Institute of Medicine and Board on Children, Youth, and Families
DIANA B. PETITTI,
Kaiser Permanente Medical Care Program, Pasadena, Calif.
HUGH H. TILSON,
Office of Pharmacoeconomics Research, Glaxo Wellcome Company, Research Triangle Park, N.C.
ROBERT B. WALLACE,
Cancer Center, University of Iowa
KENNETH E. WARNER,
Department of Health Management and Policy, School of Public Health, University of Michigan
Private Practice in Psychiatry, Baltimore, Md.
M. Donald Whorton, M.D., Inc., Alameda, Calif.
MICHAEL A. STOTO, Director
CYNTHIA ABEL, Program Officer
DONNA THOMPSON, Division Assistant
Including Children and Pregnant Women in Health Care Reform
Benefits and Systems of Care for Maternal and Child Health Under Health Care Reform
Protecting and Improving Quality of Care for Children Under Health Care Reform
Strategies for Assuring the Provision of Quality Services Through Managed Care Delivery Systems to Children with Special Health Care Needs
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Profound changes have occurred in America's health care system over the last few years. Although the 103rd Congress did not enact national health care reform in 1993–1994, the Kennedy-Kassebaum bill (P.L. 104–191) passed in August 1996 will have major implications for health insurance coverage for a number of Americans. Independent of the legislative agenda, the health care landscape is being reshaped by a convergence of rapid and major market-driven changes, including increasing pressures for cost containment, alterations in the organization and financing of Medicaid and other publicly funded health care systems, consolidation of health care delivery plans and insurers, and new divisions of responsibility among a wide range of health care professionals and organizations. Several states have moved to provide insurance coverage for all children up to age 18. In this context, states rather than the federal government are emerging as the major governmental influence on health policy development and reform. These changes are still under way in many places and must be systematically evaluated in terms of their impact on the quality of care that is provided to individuals, as well as on costs and access to care.
In the midst of these deep changes, the health and well-being of children can easily slip from view. Children are not simply small adults; with their mothers, they have special health needs related to their developmental status. Although most children are fundamentally healthy, they require health care that emphasizes preventive services such as immunizations and the continuous monitoring of physical and psychosocial growth and development, with particular attention to critical periods in which appropriate care is essential for sound development. Health interventions during adolescence, for example, provide an opportunity to prevent the onset of unhealthy behavior, as well as to establish healthy behavior
patterns that may span a lifetime. Medical care can also mitigate the impact of socioeconomic and environmental health threats and help children gain access to additional services that can improve their health and well-being.
Acknowledging the importance of a child-based perspective, and based on a long-standing interest in the health and well-being of mothers and children, the Institute of Medicine (IOM) and the National Research Council (NRC) convened five workshops between 1991 and 1994 to explore various aspects of maternal and child health care in an era of health system change. In this volume, which is intended to inform reform efforts at all levels of government and in the private sector, we reprint the summaries of those workshops, based on the views presented and opinions discussed by those who attended the workshops.
Although some of the workshops whose summaries are reprinted in this volume were focused on national-level health care reform proposals, the goals and principles that they identify are enduring and apply at all levels of government, as well as in both public and private health care systems. The reports should also be considered by federal agencies reviewing waivers of federal laws necessary to implement state reforms.
Chapter 1, "Including Children and Pregnant Women in Health Care Reform," is based on two workshops held under the auspices of the NRC/IOM National Forum on the Future of Children and Families before the launch of the major Congressional health care reform debate. This chapter reviews 11 specific goals that emerged from the workshops that address access to and benefits of health insurance for children and pregnant women, resource development, administration, and cost management and quality assurance. These goals were intended to be a touchstone for evaluating specific legislative proposals from the standpoint of children and mothers, and remain valid for proposals on the table today and in the future. In the original report these goals were applied, in an illustrative way, to seven specific legislative proposals that were being considered in 1992; these sections are out of date and are not included in this volume.
The remainder of the volume deals with more specific issues. Chapters 2 and 3 ("Benefits and Systems of Care for Maternal and Child Health Under Health Care Reform" and "Protecting and Improving Quality of Care for Children Under Health Care Reform") summarize a two-day workshop held in July 1994 in the midst of Congressional consideration of health care reform legislation. The goal of this workshop, which was organized by the NRC/IOM Board on Children and Families and the IOM Board on Health Promotion and Disease Prevention, was to lay out principles to be considered in evaluating legislative health care reform proposals. The first day of the workshop focused on benefits and systems of care for mothers and children. The second day focused primarily on quality improvement and performance monitoring for children's health services.
Chapter 4, "Strategies for Assuring the Provision of Quality Services Through Managed Care Delivery Systems to Children with Special Health Care Needs," summarizes a workshop organized in December 1994 by the IOM Board on Health Care Services to address issues related to the delivery of high-quality
health care services to special-needs children through managed care delivery systems.
Lists of committees and boards responsible for convening the workshops are in Appendix A. Lists of workshop participants are in Appendix B. In Appendix C, you will find acknowledgments of the foundations and individuals that contributed to the reports. Appendix D lists publications on related topics produced by the IOM and the NRC.
Since the original publication of the reports reproduced here, the Board on Children, Youth, and Families and the Board on Health Promotion and Disease Prevention have continued to address some of the implications for children of changes in America's health care system. One particular area of interest is the growth of managed care, especially for economically disadvantaged children and children with special needs. Along these lines, a recent joint meeting of the Board on Children, Youth, and Families and the Board on Health Promotion and Disease Prevention focused on the trend to use managed care organizations to provide care for populations formerly covered by Medicaid and other publicly funded programs.
One approach to ensuring quality health care that is receiving a lot of attention is the use of health-outcomes-based performance measures for managed care organizations and other organized health care delivery systems. The IOM is planning to address this issue through a new project that would summarize the state of the art regarding child health assessment and address the use of a child health standard in health care quality improvement activities.
In February 1996 the IOM began a three-year special initiative related to improving the quality of health care in the United States. Its purpose is to examine and report on the transition of health and health care in this nation, with a specific focus on maintaining and improving the health and well-being of the U.S. population and the quality of care delivered. America's evolving health care system, which often seems to be cost driven, creates a range of concerns about how prominently quality of care will be considered in decisionmaking, particularly for vulnerable populations. At the same time, the changes taking place create unprecedented opportunities for new approaches to quality measurement and improvement tools. We expect that the material presented in this volume will contribute to this special initiative.
Thanks go to the Ford Foundation and the W.T. Grant Foundation for supporting the funding of this volume. Thanks also go to Deborah Phillips, director of the Board on Children, Youth, and Families; Mike Stoto, director of the Division on Health Promotion and Disease Prevention; Anne Bridgman, communications officer for the Board on Children, Youth, and Families; and all the volunteer participants in the projects presented in this volume.
KENNETH SHINE, PRESIDENT
INSTITUTE OF MEDICINE
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Paying Attention to Children in a Changing Health Care System
Summaries of Workshops