Paying Attention to Children in a Changing Health Care System

Summaries of Workshops

Board on Children, Youth, and Families

Commission on Behavioral and Social Sciences and Education

Board on Health Promotion and Disease Prevention

National Research Council

Institute of Medicine

NATIONAL ACADEMY PRESS
Washington, D.C.
1996



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--> Paying Attention to Children in a Changing Health Care System Summaries of Workshops Board on Children, Youth, and Families Commission on Behavioral and Social Sciences and Education Board on Health Promotion and Disease Prevention National Research Council Institute of Medicine NATIONAL ACADEMY PRESS Washington, D.C. 1996

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--> NATIONAL ACADEMY PRESS Constitution Avenue, N.W. Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. William A. Wulf is interim president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. William A. Wulf are chairman and interim vice chairman, respectively, of the National Research Council. Support for this project was provided by the Ford Foundation and the W.T. Grant Foundation. Additional copies of this report are available from the National Academy Press , 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 20055. 800-624-6242 or 202-334-3313 (in the Washington metropolitan area). http://www.nap.edu. ISBN 0-309-05588-1 Copyright 1996 by the National Academy of Sciences. All rights reserved. Printed in the United States of America

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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 LARRY BUMPASS, Center for Demography and Ecology, University of Wisconsin FERNANDO A. GUERRA, San Antonio Metropolitan Health District. Texas BERNARD GUYER, Department of Maternal and Child Health, Johns Hopkins University ALETHA C. HUSTON, Department of Human Ecology, University of Texas at Austin RENEE JENKINS, Department of Pediatrics and Child Health, Howard University Hospital SARA MCLANAHAN, Office of Population Research, Princeton University ROBERT MICHAEL, Harris Graduate School of Public Policy Studies, University of Chicago PAUL NEWACHECK, Institute of Health Policy Studies and Department of Pediatrics, University of California, San Francisco MARTHA PHILLIPS, The Concord Coalition. Washington, D.C. JULIUS B. RICHMOND, Department of Social Medicine, Harvard University Medical School TIMOTHY M. SANDOS, City Council, Denver, Colorado DEBORAH STIPEK, Graduate School of Education, University of California, Los Angeles DIANA TAYLOR, Women's Health Program, Department of Family Health Care Nursing, University of California, San Francisco GAIL WILENSKY, 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

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--> 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 JEAN GOEPPINGER, 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 MARIE MCCORMICK, 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 ROBIN WEISS, Private Practice in Psychiatry, Baltimore, Md. DONALD WHORTON, M. Donald Whorton, M.D., Inc., Alameda, Calif. MICHAEL A. STOTO, Director CYNTHIA ABEL, Program Officer DONNA THOMPSON, Division Assistant

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--> Contents     Preface   vii 1   Including Children and Pregnant Women in Health Care Reform Sara S. Brown, Editor   1 2   Benefits and Systems of Care for Maternal and Child Health Under Health Care Reform Cynthia H. Abel, Editor   33 3   Protecting and Improving Quality of Care for Children Under Health Care Reform Jane S. Durch, Editor   49 4   Strategies for Assuring the Provision of Quality Services Through Managed Care Delivery Systems to Children with Special Health Care Needs Jo Harris-Wehling, Henry T. Ireys, and Margaret Heagarty, Editors   61 Appendix A   Committees and Boards   75 Appendix B   Workshop Participants   79 Appendix C   Acknowledgments   87 Appendix D   Other Publications of the Board on Children, Youth, and Families, the Board on Health Promotion and Disease Prevention, and the Board on Health Care Services   89

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--> Preface 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

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--> 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

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--> 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

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