National Academies Press: OpenBook

Health Care in a Context of Civil Rights (1981)

Chapter: Front Matter

Suggested Citation:"Front Matter." Institute of Medicine. 1981. Health Care in a Context of Civil Rights. Washington, DC: The National Academies Press. doi: 10.17226/18680.
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Suggested Citation:"Front Matter." Institute of Medicine. 1981. Health Care in a Context of Civil Rights. Washington, DC: The National Academies Press. doi: 10.17226/18680.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

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rar;:?: COPY » ^iv .^ HEALTHCARE IN A CONTEXT OF CIVIL RIGHTS INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1981 DEC 03 1981 LIBRARY

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. Supported by the Department of Health and Human Services Contract No. 282-78-0163-EJM, T.O. 14. Publication IOM 81-04 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. Library of Congress Catalog Card Number 81-84682 International Standard Book Number 0-309-03195-8 Available from NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington D.C. 20418 Printed in the United States of America

COMMITTEE FOR A STUDY OF THE HEALTH CARE OF RACIAL/ETHNIC MINORITIES AND HANDICAPPED PERSONS Chairman Rosemary A. STEVENS, Ph.D., Professor of History and Sociology of Science, University of Pennsylvania, Philadelphia Members Rodolfo ALVAREZ, Ph.D., Professor of Sociology, University of California at Los Angeles Susan M. DANIELS, Ph.D., Head, Department of Rehabilitation Counseling, Louisiana State University Medical Center, New Orleans Linda K. DEMLO, Ph.D., Administrative Scholar, Veterans Administration, Washington, D.C. Jonathan E. FIELDING, M.D., M.P.H., Professor of Pediatrics and Public Health, Center for Health Enhancement Education and Research, Center for the Health Sciences, University of California at Los Angeles John W. HATCH, Dr.P.H., Associate Professor, School of Public Health, University of North Carolina, Chapel Hill Frank P. HOCHMAN, M.D., Medical Practitioner, Fremont, California Sylvia LAW, J.D., Professor of Law, New York University Law School, New York David MECHANIC, Ph.D., Acting Dean, Faculty of Arts and Sciences, Rutgers University, New Brunswick, New Jersey Howard NEWMAN, J.D., Member in Residence, Institute of Medicine, National Academy of Sciences (Mr. Newman was not an active committee member after June 1980.) Helen RODRIGUEZ-TRIAS, M.D., Director, Children and Youth Comprehensive Medical Care Program, Roosevelt Hospital, New York Gerald D. ROSENTHAL, Ph.D., Director, National Center for Health Services Research, Department of Health and Human Services, Hyattsville, Maryland William A. SPENCER, M.D., President, Texas Institute for Rehabilitation, Texas Medical Center, Houston ili

Leonard I. STEIN, M.D., Professor of Psychiatry, University of Wisconsin, Madison Charles WATTS, H.D., Assistant Director, Lincoln Community Health Center, Durham, North Carolina Study Staff Bradford H. Gray, Ph.D., Study Director, Senior Professional Associate Jana H. Surdi, Professional Associate Paul M. Campbell, Professional Associate Kathryn G. King, Research Associate Bob McConnaughey, Student Intern Kenneth Wing, J.D., Special Consultant iv

CONTENTS PREFACE vii ACKNOWLEDGMENTS xi 1 INTRODUCTION AND SUMMARY OF CONCLUSIONS 1 Boundaries of This Inquiry, 2 Summary, 4 Racial/Ethnic Patterns in Health, 4 Blacks and Nursing Homes, 6 Health Care of Handicapped Persons, 9 Anti-discrimination Enforcement in Health Care, 13 Conclusion, 18 References, 18 2 HEALTH CARE OF MEMBERS OF RACIAL AND ETHNIC MINORITY GROUPS 20 Health Status and Health Care, 25 Indicators of Health Status, 26 Measures of Mortality, 26 Measures of Morbidity, 28 Measures of Health Status, 29 Use of Medical Services, 32 Ambulatory Care, 32 Hospital Care, 50 Dental Care, 58 Conclusion, 60 References, 61 3 RACIAL DIFFERENCES IN USE OF NURSING HOMES 72 Introduction, 73 Use of Nursing Homes by Blacks, 75 Levels of Disability, 77 Family Factors and Nursing Home Use, 81 Factors Affecting the Availability of Nursing Homes for Minorities, 88 Research Needs, 99 Conclusions, 101 References, 101

4 HEALTH CARE OF HANDICAPPED PERSONS 105 Issues of Definition and Concept, 107 Size and Demographic Characteristics of the Handicapped Population, 110 Issues in Assessing Health Care Problems of Handicapped Persons, 114 "Health" and the Limits of the Medical Model, 114 Use of Health Services, 114 Difficulties of Assessing Need, 114 Deterrents to Health Care for Handicapped Persons, 118 Attitudes/Knowledge of Health Professionals, 118 Supply and Distribution of Resources and Services, 120 Physical Deterrents, 120 Communication Deterrents, 122 Financing Health Care, 124 Conclusions, 133 References, 134 5 LEGAL MECHANISMS FOR CIVIL RIGHTS ENFORCEMENT 140 Overview of Civil Rights Laws, 141 Title VI of the Civil Rights Act of 1964, 141 Other Approaches to Civil Rights Enforcement, 144 The Health Planning Program, 145 The Hill-Burton "Community Service" Obligation, 148 Conclusions, 153 References, 157 APPENDIXES A Racial Patterns Within Medicare and Medicaid 161 B Relevant Portions of the Title VI Regulations 166 C Guidelines for Compliance of Nursing Homes and Similar Facilities With Title VI of the Civil Rights Act of 1964 168 D Hill-Burton Community Service Regulations 171 E Case Study: Cook v. Ochsner 174 F Speakers Presenting Testimony at Open Meeting of the Committee on Health Care of Racial/Ethnic Minorities and Handicapped Persons 185 vi

PREFACE This report is peculiarly American. The committee was brought together at the request at the Office for Civil Rights, Department of Health and Human Services, to review information about observable disparities or inequalities in health care affecting two large, dissimilar, and distinctive groups—members of social/ethnic minorities and handicapped persons—whose only link is through civil rights legislation. Minority groups are a primary target of legislation under Title VI of the Civil Rights Act; handicapped individuals under Section 504 of the Rehabilitation Act. We were asked not to draw conclusions as to whether and in what respects members of these groups were subject to racial discrimination or discrimination by virtue of handicapping condition. Nevertheless, the choice of these two groups—whose conjunction would make little sense in considering policies in any other country's health care system—was clearly generated by interests as to whether and in what respects civil rights procedures ought to be extended in the health care system. As a committee we have tried to be objective in the collection, analysis, and presentation of our data. Yet the subject matter of this report is value-laden. The ambiguities, complexities, and tensions in American health care make discussions of equality particularly difficult. Who is to say what is fair or unfair in the receipt of health services in the United States, and on what basis? There is no consensus, at least as yet. What disparities in the receipt of care are to be regarded as just or unjust? What differences are to be legally prohibited under civil rights legislation? Nearly all Americans would claim that at least some health services should be available to all members of the population or even perhaps that, as far as possible, health services should be distributed "equitably." But how does one approach questions of equity? Does equity mean equal numbers of visits for all groups? Equal length of life? Because the structure of the American health care system is not designed to deliver services equally to all members of the population, it makes little sense to assume that, with a little tinkering, it would. Moreover, health is not the same as the receipt of medical care. Factors extraneous to the health care system, such as income, diet, smoking, genetic heritage, and stress, may powerfully affect an individual's condition. Even in countries where equality of services vii

is a goal, as in Britain, there remain striking differences in the health of different groups.* Britain's analysis of health by social (occupational) class raises yet another set of uncertainties. Discussion of social class differences is faintly un-American; race and handicapping conditions provide more urgent classifications, as reflected in civil rights concerns. Even the choice of groups for study (and available data) reflects cultural beliefs. Yet it is precisely because the questions are difficult and value-laden, and because of the empirical complexities of investigation, that this report has been undertaken. If serious discussion about equalities and inequalities in American health care is to take place, review of available evidence about disparities in American medical care is obviously essential. Members of this committee agreed to give their time to this study because of concern about the adequacy of care to various members of the population, signified here as care to minorities and handicapped individuals. Equity is an important value in the society in which we live. Access to health care ought to be assured to all members of the population. This study reveals serious imbalances in care received by different groups. As financial resources for medical care become more limited, particularly in programs such as Medicaid that disproportionately affect needy individuals, it becomes correspondingly more important to articulate the social goals of health care programs and to measure their effects on different populations. By arraying available evidence about disparities in health and health care—scanty though this evidence often is—this report is a beginning of a process of discussion and debate (and better data collection) out of which health and civil rights policies can be more openly addressed. Civil rights approaches also need considerable discussion and clarification as they apply to health care issues. We do not mean to imply in this report that disparities in care in and of themselves are civil rights issues in the legal sense. If the law's objective is to eliminate purposeful discrimination on the basis of race or physical handicap in the delivery of health care, then it will not suffice simply to discover or show that there are significant disparities in the use of, or access to, health care. As one of our legal critics pointed out, many observers believe that the major civil rights problem today is not conscious and overt discrimination, but rather the more subtle problem associated with a pattern of racially neutral decisions that have racially disparate consequences. The problem here may be a structural one of institutional indifference or insensitivity to the concerns of racial or ethnic minorities or other constituencies not represented in the decision-making process. From this standpoint, perhaps the most effective regulatory action would be to require the decision makers, in various health planning contexts at least, .to * Inequalities in Health, Report of a Research Working Group (Sir Douglas Black, chairman), (London: Department of Health and Social Security, August 1980). viii

assess the likely consequences of proposed actions on access to and utilization of health care services by racial and ethnic minorities or other disparate groups. This and similar points of debate can only be reached persuasively, however, after careful review of available evidence. We show here the evidence on disparities that now exists and note the serious short- comings (sometimes conflicts) in this evidence. Adequate data are prerequisites to civil rights enforcement activities under present legal obligations and to the continuing process of definition of disparities that are to be regarded as unreasonable or illegitimate in terms of civil rights legislation. We need better data in order to think more clearly about civil rights and health policy development. Yet it would be a paltry excuse to use the absence of good data to avoid raising policy issues at all. What we have done here is to identify (1) areas in which disparities appear to exist in the health care of members of ethnic/minority groups and handicapped populations compared with the general population and (2) areas in which better information is particularly needed. For analytical purposes we have assumed that any evidence of disparity deserves investigation as a potential health policy or civil rights issue. Given the committee's mandate and time constraints, the report is inevitably "unfinished." Reviewers consulted by the Institute of Medicine and by the committee have chided us, inter alia, for failing to specify empirical questions or conceptual frameworks; for being insufficiently critical of the complexities in health care (and in American society in general) that may well lead to disparities in care; for failing to disentangle the effects of socioeconomic status; for not providing adequate definitions of "ethnicity"; for lack of discussion on the ethical implications of disparities in care; and for suggesting that disparities may imply discrimination. Some of these criticisms arise from serious inadequacies in the basic data. For example, ethnicity (or handicap), health care, location, and social class are mutually dependent variables, all of which need to be understood in assessing how real and how general differences in health care actually are. Middle-class blacks may have better health care than lower-class non-blacks; poor people may feel discriminated against whether or not they are from a minority group; persons with hearing problems may report different health care experiences in different cities. Unfortunately, as this report shows, most existing studies do not array data (or do not collect data) by all these variables. We need studies of what different subgroups think about health and illness, whom they go to for care, and with what satisfaction and apparent results. Useful classifications of handicapping conditions are only beginning. In many ways the inadequacies in the data reflect a general unwillingness to think about the policy issues. This report is designed to stimulate action on both the policy and the informational fronts. Some of the criticisms stem from the committee's mandate. We have not developed empirical questions or conceptual frameworks. We have presented an overview of current research findings and survey ix

data on which others may base further investigations. He have assumed that disparities are "problems" in American health care, whether or not these disparities might prove to be quite reasonable in the light of further empirical investigation or interpretations. Some of the criticisms stem from the committee's biases and perceptions in areas where there are differences of opinion. Some errors of presentation or judgment undoubtedly remain. In our thanking a particularly helpful (if feisty) panel of reviewers, it should be observed that it is precisely this continuing process of clarification, dissent, and discussion that this report is designed to provoke. It is the chairman's prerogative and pleasure to thank all those who have contributed. A study such as this can be an exciting educational as well as working experience; I should like to thank a superb committee. The bulk of the work rests, however, on staff. We are extremely fortunate in having Bradford H. Gray as study director. Dr. Gray's expertise and experience as a sociologist who has written extensively on ethical issues in health served us well in developing an agenda. He brought focus and discipline to the work of a group that had far more ideas than time or the means to investigate them. He has the appreciation and thanks of the entire committee. Dr. Gray gives specific thanks below to other important contributors. Here let me just say, thank you, to all of you. ROSEMARY STEVENS Chairman

ACKNOWLEDGMENTS I would like to gratefully acknowledge the contributions of the many people and organizations who provided assistance to this study. As members of the study staff, Jana Surdi drafted materials that eventually became Chapter 4, and Paul Campbell prepared the summary on racial trends in Medicare and Medicaid that is included as Appendix A. As a summer intern, Bob McConnaughey drafted materials on spatial and geographical aspects of the care of minority groups. Professor Kenneth Wing was a consultant to the committee throughout its existence. In addition to his counsel, he prepared two background papers. One is included as Appendix E, while much of the other found its way into Chapter 5. However, he should not be held responsible for the appearance of the final form of the material he provided nor for the departures from strict legal style in the footnotes. Many people met with the study committee and shared their expertise about various aspects of the study. These include Dr. Lu Ann Aday from the University of Chicago, Dr. Jacob J. Feldman from the National Center for Health Statistics, Dr. Judith Kaspar from the National Center for Health Services Research, Drs. William Scanlon and Jack Hadley from the Urban Institute, and Dr. Donald Muse from the Health Care Financing Administration. At its briefing in Los Angeles, committee members met with Ms. Sylvia Drew Ivie, then of the National Health Law Program; Ms. Marilyn Holle from the Western Center for Law and the Handicapped; Ms. Mary Ashley from the Martin Luther King, Jr. Hospital; Drs. Rosalyn Murov and Steve Tarzynski from the Los Angeles County Hospital; Mr. Stanton Price, Esq.; Mr. Hal Freeman from the DHHS Office for Civil Rights in San Francisco; Ms. Barbara Guajaca from La Clinica Libre; Ms. Ruth Chaidez from Orange County Hospital; Mr. Miguel Lucero of the Chicano Health Institute of Students, Professors and Alumni in Berkeley; Dr. Adrian Ortega from the Edward R. Roybal Comprehensive Health Center; and Ms. Carmen Estrada, Esq., from the Mexican-American Legal Defense and Education Fund. Many people kindly shared unpublished data, studies, and papers with us. The National Center for Health Statistics was particularly helpful in this regard, as was the staff of the National Health Law Program who generously shared not only their time but also a wide variety of materials—reports, briefs, and correspondence—that they had accumulated in the course of their work. We are grateful to all xi

of the people who shared their experience and research with the committee. This report is much the richer for it. We particularly appreciate the efforts of the people, listed in Appendix F of this report, who prepared testimony for the committee's public meeting. In addition to the official IOM/NAS review, a number of people contributed to the report by reviewing and commenting on drafts of parts or all of the report. In this regard I am grateful for the assistance of Dr. Ethel Shanas, Dr. T. Franklin Williams, Mr. Peter Hutt, Mr. Peter Labassi, Dr. Peter Budetti, Ms. Helen Darling, Dr. Gretchen Schafft (who also generously shared her experience and knowledge of the literature on blacks and nursing homes), and Professor Richard J. Bonnie. The support and assistance of our project officer, Dr. John Halverson, and his colleagues at the Office for Civil Rights also is gratefully acknowledged. Dr. Carleton Evans, Director of the Division of Health Care Services at the Institute of Medicine, made invaluable contributions to the study both through his intellect and by providing a supportive environment in which the staff could work. Ms. Jessica Townsend and Ms. Marie Kerr provided skilled research and editorial assistance at a crucial time in the production of the final manuscript. Ms. Pat Cornwell served the study well in a secretarial capacity through most of its existence. Ms. Naomi Hudson was responsible for the preparation of the final manuscript. This study was a great challenge for everyone who worked on it. Without the good will and assistance of many people, it could not have been completed. I want to particularly thank Dr. Rosemary Stevens for her tireless, intellectually rigorous, and always cheerful leadership of the committee and support of the staff. We shall both know better next time. BRADFORD H. GRAY, Ph.D. Study Director xii

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