Real People Real Problems

An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act

Division of Health Care Services

INSTITUTE OF MEDICINE

Jo Harris-Wehling, Jill C.Feasley, and Carroll L.Estes, Editors

Washington, D.C. 1995



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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Real People Real Problems An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Division of Health Care Services INSTITUTE OF MEDICINE Jo Harris-Wehling, Jill C.Feasley, and Carroll L.Estes, Editors Washington, D.C. 1995

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Institute of Medicine 2101 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 this 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 Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy’s 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I.Shine is president of the Institute of Medicine. Support for this project was provided by the Administration on Aging, U.S. Department of Health and Human Services, Contract No. HHS-100–93–0032. Library of Congress Cataloging-in-Publication Data Real people, real problems: an evaluation of the long-term care ombudsman programs of the Older Americans Act/Jo Harris-Wehling, Jill C.Feasley, and Carroll L.Estes, editors. p. cm. Includes bibliographical references 1. Nursing homes—Patient representative services—United States. 2. Long-term care facilities—Patient representative services—United States. 3. United States. 3. United States. Older Americans Act of 1965. 4. Nursing homes—Complaints against—United States. 5. Nursing homes—Law and legislation—United States. 6. Nursing home patients—Legal status, laws, etc.—United States. 7. Nursing homes—Standards—United States. I. Harris-Wehling, Jo, 1941– II. Feasley, Jill C., 1965–. III. Estes, Carroll L. IV. Institute of Medicine (U.S.). Division of Health Care Services, RA999.P34R43 1995 362.1’6’0973–dc20 94–42711 CIP Copyright 1995 by the National Academy of Sciences. All rights reserved. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatlichemuseen in Berlin. Printed in the United States of America

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act COMMITTEE TO EVALUATE THE STATE LONG-TERM CARE OMBUDSMAN PROGRAMS CARROLL L.ESTES,* Chair, Professor and Director, Institute for Health and Aging, University of California at San Francisco JANICE M.CALDWELL, Executive Director, Texas Department of Protective and Regulatory Services, Austin, Texas DONALD L.CUSTIS, Senior Medical Advisor, Paralyzed Veterans of America, Washington, D.C. WORTH B.DANIELS, JR.,* Medical Director, Union Memorial Hospital Hospice, Baltimore, Maryland REBECCA D.ELON, Assistant Professor and Medical Director, Division of Geriatric Medicine and Gerontology, Francis Scott Key Medical Center, Johns Hopkins Geriatrics Center, Baltimore, Maryland CHRISTINE GIANOPOULOS, Director, Bureau of Elder and Adult Services, Augusta, Maine ELMA L.HOLDER, Executive Director, National Citizens’ Coalition for Nursing Home Reform, Washington, D.C. ROSALIE A.KANE, Professor, Division of Health Services, Research, and Policy, University of Minnesota School of Public Health, Minneapolis VIVIAN OMAGBEMI, Long-Term Care Ombudsman, Department of Family Resources, Division of Elder Affairs, Area Agency on Aging, Wheaton, Maryland MARY D.POOLE, Consultant, Fund Development and Institutional Advancement, Albuquerque, New Mexico JOANNE RADER, Clinical Research Fellow, Benedictine Institute for Long-Term Care, Mt. Angel, Oregon CHARLES P.SABATINO, Assistant Director, American Bar Association Commission on Legal Problems of the Elderly, Washington, D.C. JEANNE V.SANDERS, Administrator, Golden View Health Care Center, Meredith, New Hampshire PETER W.SHAUGHNESSY, Director, Center for Health Services Research, University of Colorado Health Sciences Center, Denver, Colorado JOHN H.SKINNER, Associate Professor and Director of Graduate Studies, Department of Gerontology, College of Arts and Sciences, University of South Florida, Tampa HOLLIS G.TURNHAM, State Long-Term Care Ombudsman, Citizens for Better Care, Lansing, Michigan *   Institute of Medicine Member

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act STUDY STAFF, Division of Health Care Services KATHLEEN N.LOHR, Director JO HARRIS-WEHLING, Study Director JILL C.FEASLEY, Research Associate ANITA M.ZIMBRICK, Project Assistant H.DONALD TILLER, Administrative Assistant SUSAN M.WYATT, Financial Officer LYNN E.CHAITOVITZ, Consultant ELINORE E.LURIE, Consultant

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Preface The subject of this study, the long-term care (LTC) ombudsman programs, came about two decades ago in response to the widespread perception that there was a crisis in nursing home quality. Despite laws and regulations to address these concerns and to protect nursing home residents, scandals involving poor and negligent care were surfacing. The mission of the ombudsman program was twofold: while advocating for broad policy changes, ombudsmen were to help resolve the very real problems faced by real people in nursing facilities. In 1981, the program’s mission was extended to cover the concerns of residents of board and care facilities. Over the past two decades, quality assurance activities for nursing facilities have multiplied. In particular, a 1986 Institute of Medicine study, Improving the Quality of Care in Nursing Homes, made far-reaching recommendations for federal policy in this area. As a result of that study and subsequent legislation in 1987, several policies have been adopted to address problems in nursing home quality. Phasing in these changes is a slow and lengthy process that is far from complete. Although ombudsmen do not bear the responsibility of implementing these changes, much of their activity for the past decade has been concerned with and shaped by the anticipation, inception, and implementation of these new laws and regulatory reforms. In the early 1990s, policymakers—at the urging of ombudsmen themselves—concluded that an in-depth examination of the program was warranted to examine its present strengths and weaknesses and assess its potential for future contributions. The Congress of the United States directed the Assistant Secretary for Aging of the Administration on Aging (AoA) to conduct a study of the state LTC ombudsman programs. AoA subsequently contracted with the Institute of Medicine to perform the study.

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act The effectiveness of the current program is not well understood, and its potential for having a meaningful impact beyond the relatively narrow settings of LTC facilities is not known. Nevertheless, the program serves as a model for several proposed “health care ombudsman” programs. Consequently, many experts and parties interested in the LTC arena, as well as those concerned more broadly with comprehensive health care reform, will look to this study for guidance. Can the structure, activities, and accomplishments of the present LTC ombudsman program be successfully generalized to other settings, populations, and challenges? This report is the culmination of a 12-month effort by a committee of 16 individuals recognized for their expertise in LTC, medicine, medical sociology, health care policy and research, clinical research, health law, health care administration, state government policy and program administration, consumer advocacy, public health, voluntarism, and the LTC ombudsman program. The charge to this committee was to assess the LTC ombudsman programs’ performance and, when appropriate, to make recommendations on public policy strategies by which the program can better achieve its objectives. The committee engaged in several factfinding activities, including: site visits to six states; seven commissioned papers; structured, systematic contacts with directors of state units on aging, state and local LTC ombudsmen, LTC physicians, and grassroots advocacy groups; a one-day invitational symposium; a public hearing; two “open-mike” sessions at national professional conferences; discussions with four national associations of LTC facility providers; and a technical panel that was convened twice and called upon as needed throughout the course of the study. The committee concluded that the ombudsman program serves a vital public purpose and merits continuation with its present mandate. Through advocacy efforts at both the individual resident and the system levels, paid and volunteer ombudsmen uniquely contribute to the well-being of LTC residents—complementing, but not duplicating, the contributions of regulatory agencies, families, community-based organizations, and providers. To underscore this commitment to the mission of the program, the committee sets forth several recommendations that are intended to bring the programs in compliance with the legislated mandates; build a nationwide database on key structure, process, and outcomes measures for the program; enhance each state’s ability to operate a unified statewide Office of the LTC Ombudsman; stimulate and guide needed research; and encourage leadership from the federal government. The committee conjectured about the future of the ombudsman program in light of the health care reform movement and recent trends in health care and LTC. For more than a decade, virtually all components of the health care delivery system have undergone restructuring and have experienced the “ripple” or “domino” effects of Medicare and other policy changes. The

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act process of change holds significant clues about the future direction of health care and implications for the LTC ombudsman program. The increasing growth and dominance of managed care organizations raise complex issues for LTC. Among the more pressing are: the relationship of LTC facilities and services to managed care organizations, how cost-containment strategies will be implemented in LTC settings, and how they will influence the organization, scope, and delivery of care. Additionally, the nature and scope of community-based service delivery has altered to such an extent that traditional conceptions of post-hospital care and LTC are no longer realistic. Average lengths of stay in nursing homes are decreasing and the nursing home is shifting in some respects from a long-term residence to a subacute facility. The home care sector is experiencing considerable growth, attributable in part to advances in medical technology that have led to the transfer of “high-tech” medical procedures from hospitals, clinics, and nursing facilities to the home setting. Increased demand for ombudsman-type services will likely rise as managed care and cost-containment strategies play a more prominent role in decision making about who does—or does not—enter nursing facilities and other LTC facilities, and as more LTC services are provided in home- and community-based settings. If the ombudsman of the future serves only residents of LTC facilities, many vulnerable persons needing the services offered by an ombudsman will be denied access. The extent to which the LTC ombudsman program is poised for integration into the frameworks of the larger, restructured health care system and coordinated with other forms of consumer advocacy depends in part on how successfully the present program fulfills it mission. The committee’s recommendations are intended to strengthen the program’s capacity to carry forth with its current mission and prepare for the real problems that will be faced by real people in the future. Carroll L.Estes Chair

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Acknowledgments The Committee to Evaluate the State Long-Term Care Ombudsman Programs of the Older Americans Act would like to acknowledge the assistance that they and the study staff received from several individuals and groups during this study. The study was funded by the Administration on Aging (AoA) of the Department of Health and Human Services (DHHS). AoA staff members—William Benson, Saadia Greenberg, Jack McCarthy, Michio Suzuki (deceased October 1994), and Sue Wheaton—helped keep the committee and staff informed of relevant activities, facilitated contacts with the printer of the committee’s report, and provided useful background material on the ombudsman program. James Steen served as the study’s project officer until mid-January 1994; Nancy Wartow served in that capacity thereafter. Staff in several regional offices of the AoA and the DHHS Office of the Inspector General provided background information for the study. We are indebted to several hundred individuals in the six states visited by the committee (California, Colorado, Florida, Massachusetts, Minnesota, and Virginia) who welcomed the committee graciously into their communities and shared their thoughts, experiences, and time. On each visit, the committee met with state, local, and volunteer ombudsmen, residents and staff of nursing facilities and board and care homes, state officials, and advocates. The committee appreciates the efforts of several individuals who provided testimony at the study’s public hearing: Pat Nuckols, Beth O’Neill, Mercedes Patterson, Mary Sapp, and John Willis. We also express our gratitude to the many active state and local long-term care (LTC) ombudsmen, both paid and volunteer, and former ombudsmen for participating in our study. Additionally,

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act the committee is grateful to the state unit on aging directors who contributed to the study. The committee expresses its appreciation to the individuals who contributed to the committee’s symposium in February 1994: William Benson, Sara Best, Albert Buford, Meredith Cote, Curtis Decker, Virginia Dize, Barbara Frank, Iris Freeman, Marshall Kapp, John Newmann, Patricia Riley, Michael Schuster, Carol Scott, and Bruce Vladeck. More than 75 people attended the symposium, and the committee benefitted from their questions and comments. The committee received helpful contributions from many other experts and interested parties. We are indebted to the authors of the commissioned papers prepared for this study, which were used extensively by the staff and committee in their deliberations and in drafting this report; all are cited in the references. They include: Martha Holstein, Roland Hornbostel, Ruth Huber, James Kautz, Deborah Lower, Richard Lusky and colleagues, and Charles Phillips and colleagues. The following representatives of national associations also provided valuable information and assistance at one committee meeting: Shawn Bloom, George Cate, Carol Fisk, Louis Iovieno, Evvie Munley, Janet Myder, Susan Pettey, and Ronald Retzke. Philip Lee provided inspiring comments at the committee’s first meeting and Arthur Flemming honored us with his presence at our last meeting. We are especially indebted to Dr. Flemming for his comments about “real people with real problems,” thereby providing the title for our study’s report. The committee is particularly grateful to the members of the study’s technical panel for their interest, support, and assistance throughout the project. The individuals and organizations on the panel included: Ester Houser Allgood, National Association of State Long-Term Care Ombudsman Programs; Virginia Dize, National Association of State Units on Aging; Toby Edelman, National Senior Citizens’ Law Center; Roland Hornbostel, Ohio Department of Aging; Sara Hunt, National Long-Term Care Ombudsman Resource Center; and Brina Melemed, National Association of Area Agencies on Aging. Many individuals shared unselfishly the results of their work with the committee. In particular, the committee thanks Rachel Filinson, Rhode Island College; Barbara Frank, Connecticut Office of the State LTC Ombudsman; Virginia Fraser, Colorado Office of the State LTC Ombudsman; Colleen Galambos, formerly with the Maryland Gerontological Association; Lynn Mason, University of Denver; Patricia Murphy, formerly of the New York City Ombudsman program; Wayne Nelson, Oregon Office of the State LTC Ombudsman; Ellen Netting and Bob Schneider, Virginia Commonwealth University; John Olinger, Thomas J. Downey & Associates; Tony Potter, New Hampshire Office of the State LTC Ombudsman; Alex Ross, Public Health Service; and Louie Terango, Legal Counsel for the Elderly at the American

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Real People Real Problems: An Evaluation of the Long-Term Care Ombudsman Programs of the Older Americans Act Association of Retired Persons. Additionally, we appreciate the help of several individuals at the National Citizens’ Coalition for Nursing Home Reform who shared their library resources, findings from recent surveys, and draft manuscripts of journal articles: Sarah Burger, Holly Dabelko, Michelle Kitchner, Jacklyn Koenig, and Lori Owen. The committee and staff also received helpful contributions from Elinore Lurie, a consultant to the committee. We worked closely throughout most of the study with Lynn Chaitovitz, consultant, and we are most grateful for the contributions she made to the study. Karen Linkins and Marie Christine Yue, Institute for Health and Aging, University of California, San Francisco, were always willing to help when called upon for unexpected tasks. Finally, the editors extend their appreciation to their colleagues at the Institute of Medicine whose efforts were invaluable and contributed to the successful completion of the study and this report. Kathleen Lohr, in addition to providing invaluable guidance and support throughout the study, provided considerable and timely assistance in the preparation, review, and revision of several chapters of this report. Karl Yordy was particularly helpful in the early stages of planning and initiating the study; he subsequently worked with the committee at its third meeting. We are especially grateful for the insight and advice he provided. Anita Zimbrick provided essential secretarial support. Other IOM staff made valuable contributions behind the scenes; we thank Mary Jay Ball, Claudia Carl, Michael Edington, Nina Spruill, Donna Thompson, H.Donald Tiller, and Sue Wyatt.

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