National Academies Press: OpenBook

Health Care in a Context of Civil Rights (1981)

Chapter: INTRODUCTION AND SUMMARY OF CONCLUSIONS

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Suggested Citation:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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:"INTRODUCTION AND SUMMARY OF CONCLUSIONS." 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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Chapter 1 INTRODUCTION AND SUMMARY OF CONCLUSIONS It is well known that Title VI of the Civil Rights Act of 1964 prohibits discrimination on the ground of race, color, or national origin in any program or activity receiving federal financial assistance; Section 504 of the Rehabilitation Act of 1973 similarly prohibits discrimination by reason of handicap. But relatively little is known about the applicability of these laws in federal health care programs. Through most of its existence in the former Department of Health, Education, and Welfare, the Office for Civil Rights (OCR) devoted most of its resources to the field of education. With the creation of the Department of Education, the Office for Civil Rights in the new Department of Health and Human Services (DHHS) appears likely to increase its attention to health care. Even before the passage of legislation to divide the Department of Health, Education, and Welfare, OCR had a growing concern with issues that arise in health care. It was, for example, involved in major litigation over patterns of racial segregation in the hospitals of New Orleans and was investigating individual health-related complaints as they arose. However, OCR's few excursions into health had not been based on any systematic assessment of where and in what forms serious problems exist, what evidence might be relevant to the topic, and what sources of information are available. OCR asked the Institute of Medicine to appoint a committee to prepare a report on disparities in health services for racial and ethnic minorities and handicapped people. The committee was also requested to indicate additional work needed to further specify problem areas and suggest possible approaches to remedies. This report is the result of the committee's examination of these issues. The application of civil rights principles to the delivery of health services is taking place in the context of a changing environment of law as well as health care. In only a few decades, the United States has evolved from a society in which racial discrimination was tolerated and even mandated by legal institutions, to one in which the law forbids many forms of discrimination. Private and public institutions are now explicitly encouraged, and in many cases required, to engage in a variety of activities to eliminate discrimination and alleviate effects of past discrimination.

At the same time, the 1960s and 1970s brought rapid changes in the delivery of health care, marked by increased governmental involvement in its provision, financing, and regulation. Although a full commitment to equality has never characterized American health policy, many governmental programs, as well as civil rights laws, are grounded in concerns about inequity. However, serious questions arise whether the present, partial commitments to equality in health care will be maintained in the face of growing concerns about health care costs. The growing preoccupation with cost control creates pressures for changes that may reduce the availability of health care for the groups for whom civil rights protections are most critical. The transition from recognition of certain rights in principle to their realization in fact and the translation of broad policy mandates into directives for day-to-day decisions about discrimination have provided severe tests for our legal institutions. There are few settled legal principles on which judgments can rest about particular programs, such as those that finance certain health services. Many aspects of civil rights law, even those as fundamental as the scope and applicability of various non-discrimination prohibitions, remain to be settled. The civil rights debates of the 1960s and 1970s about such concepts as equal access, equal opportunity, or equality of results in areas of education, employment, housing, and voting rights are likely to be replayed if more active civil rights enforcement develops in health. Yet, it is not clear under what circumstances factual disparities in the provision of care by hospitals and other providers will be considered by the courts to be a result of unlawful discrimination and, if discrimination is identified, what remedies are appropriate and effective. Moreover, issues that arise in the context of health care cannot be understood or resolved by simple analogy to education, housing, or employment. Anti-discrimination law is most developed in the area of public education, where almost all action is plainly "public." Health care is characterized by public funding and private control. Public funding takes the form of publicly subsidized insurance, direct funding of specific service programs, provision of construction and education funds, and tax exemptions for capital investment in health care facilities, personal health expenditures, and not-for-profit organizations. Private decision making is influenced by technological concerns, pressures to maximize revenues, the need for financial stability, and the relative importance of personal preferences growing out of the fact that health services are, after all, intimate personal services. BOUNDARIES OF THIS INQUIRY This study was intended to document the extent to which race/ethnicity and handicaps are associated with disparities in people's ability to obtain care and in the amount and quality of care they receive. Disparities in the receipt of services are particularly important to question when they do not appear to reflect differences in need.1

The study was also to seek possible explanations for such disparities, which may result from such factors as differences in geographic proximity to services, in beliefs about health and about the value and appropriateness of medical care, or in ability to pay. Of particular concern in a civil rights context are disparities resulting from impediments to care because of racial/ethnic or handicapping factors. The study was not intended to prove that discrimination exists or to recommend enforcement actions against it. Similarly, no attempt was made to limit the discussion to matters that clearly involve illegal discrimination or a discriminatory intent.2 The legal definition of discrimination is not settled and will emerge only from the decisions of the courts when confronted with particular cases and sets of facts. To date, there has been very little civil rights litigation on the health care matters examined in this report. The examination of disparities among groups may itself need explanation, since appropriate medical care must be defined by physicians and patients, in part, in terms of factors that vary from patient to patient. Each patient has unique characteristics; to see patients as individuals rather than as members of classes is an admirable ideal in medicine. Yet, experiences take on meaning from their context; data on patterns of care are essential if we are to separate random events from systematic occurrences. The examination of variations in rates and the factors associated with those variations can tell a great deal about the operation of systematic factors that may be linked with such patient characteristics as race or handicaps. It is important to know if a policy or practice that limits a person's ability to obtain needed care is focused on, for example, a particular racial group or whether it encompasses a larger grouping (for example, poor people) that contains disproportionate numbers of persons from that racial group. Only through examination of rates and sources of variation can such factors be disentangled. It was recognized at the outset of this study that the subject matter was broad and that a variety of factors contribute to disparities in health care. This report identifies problem areas, tentatively examines hypotheses about possible causes, and recommends future data-gathering activities that would allow more definitive conclusions and policy recommendations to be reached. Selectivity was necessary because of limitations on on the availability of both evidence and the resources to review it. For example, no examination of the Indian Health Service was attempted. The problems raised by hospital closures and relocations were largely excluded from the study at the request of the OCR, which had other activities under way on that topic. Only limited attention was given to issues that arise in psychiatric care. This report is based primarily on the committee's review of the relevant research and statistical literature on health care, its attempts to identify data sources and methodological approaches of potential usefulness, and its review of the responsibilities of the OCR and past civil rights enforcement activities. In some instances the committee sought and obtained, particularly from the National Center for Health Statistics, new analyses of existing data that

helped to shed light on particular questions. In addition, by means of a hearing in Washington, a series of briefings at a meeting of the committee in Los Angeles, and through correspondence with many organizations, the committee obtained the views of persons who have been actively engaged in concerns about the health care of the groups on which this study focuses. SUMMARY The major theme of this report is the extent to which race/ethnicity or handicaps affect whether and where people obtain medical care and the quality of that care. The committee reached the general conclusion that race is associated with differences in the use of health services and that these differences do not mirror differences in need. The causal relationships behind these associations are complex and poorly documented. However, existing data are too incomplete and contradictory to provide either a full picture of disparities or clear explanations of racial and ethnic patterns of health services use. With regard to handicapped populations, there are not only serious deficiencies in data, but criteria are lacking for judging whether unwarranted disparities exist. Available evidence fails to provide an adequate picture of services obtained by those with handicapping conditions. At the same time, the state of the law is uncertain with respect to application of civil rights laws to the health care scene. Studies and legal tests that would clarify these matters are needed. The following chapters include recommendations for data collection. This report contains five chapters. The remainder of Chapter 1 sets forth the committee's findings and conclusions. Subsequent chapters provide the evidence on which the committee's conclusions rest. Chapter 2 summarizes available evidence regarding the health status and health care of racial and ethnic minorities. Chapter 3 presents a more detailed analysis of the possible explanations for one of the most striking racial discrepancies in health care: the use of nursing homes. Chapter 4 discusses the health care of handicapped persons, especially obstacles that bear on their ability to obtain needed care. Chapter 5 examines the legal approaches by which civil rights concerns can be addressed, including direct enforcement of civil rights laws by the OCR, the activities of health planning agencies, and the commitments made by institutions in obtaining Hill-Burton funds for facility construction. Racial/Ethnic Patterns in Health Care Chapter 2 describes evidence on the extent to which race and ethnicity affect people's need for medical care, the amount of care they receive, the sources from which they obtain care, and the quality of the care they receive. The evidence reviewed by the committee pertains in the main to blacks and, to a lesser extent, Hispanics.

There is considerable evidence that racial and ethnic factors are associated with disparities in patterns of health care. Although the data reviewed in Chapter 2 are not definitive, they clearly support the concern of many people that minority groups are still discriminated against in this country. The committee's findings include the following: * Anecdotes abound of instances of minority patients who are seriously ill, badly injured, or in active labor being turned away from hospitals, transferred to other (public) hospitals, or subjected to long delays before care is provided. These problems appear to be most frequent for blacks in the south and for the Mexican American, immigrant, and American Indian populations of the Southwest and West. The cases may involve both patients' racial/ethnic status and their poverty and result from the application of such hospital policies as requiring advance payment under certain circumstances, refusing to accept Medicaid, not informing patients of the "free care" obligations that the hospital assumed in accepting Hill-Burton funds, not accepting patients who do not have a personal physician, requiring that poor patients complete applications for Medicaid (which may deter immigrant patients who are here under color of law but who are not U.S. citizens), and attempting to determine the immigration status of patients and to transfer to Mexican hospitals patients about whom some question exists. Although the effects of such policies can be identified in particular cases, little systematic data exist to enable an overall assessment of the extent to which such factors affect the health care of minority group members. * By a variety of measures, the average need for medical care among racial/ethnic minorities exceeds that of whites. However, notwithstanding the greater needs of these groups, they do not receive more hospitalization or physician visits than whites. Evidence from the mid-1970s suggests that federal health programs have increased poor people's ability to obtain medical care and have accomplished a reduction in some disparities in health care. However, low use of dental services among blacks and Hispanics and of nursing home use among blacks is particularly striking. * A variety of forms of racial separation or segregation exist in American health care. There are obvious racial differences in where people obtain medical care, both with regard to physician visits and hospital use. Blacks are less likely than whites to see private physicians, regardless of income level or type of insurance. Blacks are less likely than whites to see specialists rather than general practitioners. Racially identifiable hospitals continue to exist in many large cities. * Only scattered evidence is available regarding racial/ethnic differences in quality of medical care received. There are some anecdotal suggestions of poor-quality medical care for blacks in the South. There is evidence that the care provided to some minority groups comes from health professionals that are comparatively less well qualified. There is also less satisfaction with medical care among minority group members.

* Data limitations prevent an adequate description of racial/ethnic differences in health care and an adequate analysis of possible causes. Very little quantitative information is available on the extent of segregation in health care, how this varies by region, state, and city; and how federal policy (for example, regarding Medicaid) affects it. Racial/ethnic variables have not, with a few exceptions, been examined in the literature on medical care quality. From these findings, the committee drew several conclusions. First, racial/ethnic patterns in health care deserve much more serious and systematic attention than they have received from researchers and governmental statistical agencies. More studies are needed that empirically examine the factors that influence the medical care decisions of minority group members. In recent years, the National Center for Health Statistics and the National Center for Health Services Research have begun to show more concern for collecting statistically valid data on separate minority groups; such data are expensive to collect because of sampling problems, yet they are of great importance if equity questions in American health care are to be assessed. The present Health Care Financing Administration (HCFA) data are so inadequate that it is virtually impossible to draw meaningful conclusions about racial/ethnic equity in the Medicaid, Medicare, and Title V programs. HCFA should exert strong efforts to improve the quality of the racial/ethnic information on beneficiaries of these crucially important federal financing programs. An agreement between HCFA and OCR in 1980 may be a first step in increasing HCFA's attention to racial and ethnic issues. Second, in light of the evidence on racial differences in the sources of medical care, the question of racial segregation in health care, and associated questions regarding quality of health care, deserve much more attention than they have received. At present, some federal policies do not encourage racial/ethnic integration in health care. For example, policies that encourage the concentration of Medicaid patients into certain facilities contribute to racial/ethnic segregation in areas where members of some minority groups are disproportionately dependent upon Medicaid. Third, specific attention should be given to the factors that may explain the striking racial patterns regarding dental care. The data clearly show that the need for dental care (as defined by untreated disease) is much greater among blacks than among whites and the use of dental services is much greater among whites than among blacks. The data also suggest that these trends are due to more than socioeconomic differences. Blacks and Nursing Homes The committee gave special attention to this topic because blacks use nursing homes at markedly lower rates than do whites. The committee believed that an assessment of the evidence that might explain this would not only be useful for its own sake, but also to illustrate the

general complexities underlying racial/ethnic differences in health care. Although racial discrimination has been offered as an explanation for racial differences in the use of nursing homes, various other explanations have also been suggested, including differences in family networks and values among blacks and whites, differences in geographic proximity to nursing homes, racial differences in life expectancy, and racial differences in income. The evidence reviewed in Chapter 3—including published studies, anecdotal observations, and testimony presented to the committee—is consistent with the hypothesis that blacks are discriminated against in nursing home admissions. Nevertheless, little direct, systematic documentation of such discrimination exists. Most of the evidence that leads the committee to conclude that racial discrimination may play a role in nursing home admissions pertains to inadequacies of competing explanations for the low rates of nursing home use among blacks. The committee found that: * Racial differences in life expectancy do not account for the lower use of nursing homes by blacks than by whites, because the differences exist in nursing home use within age categories, particularly among persons above age 75. * The lower rates of nursing home use among blacks are not attributable to superior health status, because there is more disability among elderly blacks than among elderly whites. * Elderly blacks are more likely than elderly whites to reside as part of an extended family, which supports the hypothesis that family factors contribute to the relative absence of blacks in nursing homes. However, it is also possible that the living arrangements of elderly blacks are the result of, rather than the reason for, their lower nursing home use. * Racial difference in the frequency of extended family living arrangements notwithstanding, one national survey suggests that there are only minimal racial differences among partially disabled elderly persons in the availability of persons (including non-relatives) to provide needed assistance at home. Among blacks, such persons are more likely than those among whites to reside in the same household. However, the lack of assistance at home (an obvious reason for entering a nursing home) does not appear from this survey to vary between blacks and whites and thus cannot explain the racial difference in the use of nursing homes. * The black elderly are more likely than white elderly to be institutionalized in settings other than nursing homes, such as mental and chronic disease hospitals. This too casts doubt on the hypothesis that certain values or living arrangements that are more common among blacks than among whites lead to greater black reluctance to rely on institutions to provide needed care of the elderly. (Although good data do not exist, some observers believe that blacks, more commonly than whites, reside in unlicensed boarding facilities that meet, however poorly, some of the needs that nursing homes more often meet for whites.)

8 * Nursing home beds tend to be in short supply in states with relatively high proportions of blacks, which may partially account for the low rates of nursing home use among blacks. No data are available to assess the possible effects of proximity to nursing homes within metropolitan areas in influencing racial patterns of nursing home use. * The weaker economic position of blacks and their disproportionate dependence on Medicaid must influence their use of nursing homes. The demand for nursing home beds exceeds the supply in many locales, and most nursing homes maintain a waiting list. There are important disincentives for accepting Medicaid patients, both economic (private-paying patients typically are charged more than the Medicaid payment level) and administrative (paperwork and review procedures designed to prevent unnecessary utilization). Thus, there are good reasons to expect nursing homes to discriminate against Medicaid patients, whose number is disproportionately black. * There are large variations among states in the representation of blacks among Medicaid patients in nursing homes. In many states, blacks constitute roughly the same proportion of the Medicaid population of nursing homes as their proportion in the state's elderly, poor population. However, in several states for which data are available—most notably Mississippi, Alabama, and South Carolina—white Medicaid patients are found in nursing homes in proportions far in excess of their representation among the state's elderly poor. There is also evidence of variation from city to city in the underrepresentation of blacks in nursing homes. Such state and city variations cast further doubt on the idea that familial factors and values explain the low use of nursing homes by blacks, because it seems unlikely that black values and family structures vary greatly between such cities as Baltimore and Philadelphia. Instead, these findings suggest that, in addition to whatever discrimination exists against Medicaid patients, there is also discrimination in some states and cities against blacks within the Medicaid population. * Nursing homes tend toward racial exclusivity in some areas, making the patient population of nursing homes either virtually all white or all black. Case studies in Baltimore and Philadelphia suggest that there may be an association between the extent of segregation in nursing homes and the extent to which blacks are underrepresented. However, no conclusions can be drawn about this association because so little systematic documentation is available about the racial exclusivity of nursing homes. Economic, social, and cultural factors undoubtedly influence people's choices of nursing homes, and racial clustering in nursing homes is not conclusive evidence of discrimination. On the basis of this evidence, the committee concluded that there is a strong likelihood that racial discrimination is an important factor in the admission of blacks into nursing homes, though how widespread a factor is not clear. The evidence reviewed in Chapter 3—particularly concerning state variations in the underrepresentation of blacks in the Medicaid population of nursing homes and concerning patterns of racial segregation in nursing homes—also suggests a basis for focusing civil rights compliance review activities.

Because data shortcomings were apparent throughout the preparation of Chapter 3, the committee also offered some suggestions about priorities and research approaches, emphasizing the need for information about coping by persons who need nursing home care and about patterns of segregation in nursing homes and the processes that contribute to such patterns. In some cases, useful information can be obtained from existing data sources, but other questions can be answered only through the collection of new data. Data from the National Nursing Home Survey do not show a black/white differential in nursing home use below age 74; such findings may be used in establishing priorities for more detailed investigation of racial patterns in the use of nursing homes. Health Care of Handicapped Persons Although handicapped persons are covered by laws prohibiting discrimination in federal programs, few systematic data exist on the health care of handicapped persons that would allow for an assessment of the nature and severity of discrimination problems they face. Handicapped persons constitute a large and diverse segment of the American population. They include people with various types and degrees of permanent disabilities and people with different chronic physical and mental conditions that may require long-term therapy. In part, because of this diversity, the handicapped population is not always well understood. The concerns of handicapped people about problems of discrimination was recognized in the passage of Section 504 of the Rehabilitation Act, which prohibits discrimination against the handicapped in any program receiving federal financial assistance. The handicapped population's vulnerability to discrimination can be heightened by the fact that it includes disproportionate numbers of the poor, the black, and the elderly. Many handicapped persons are to some degree dependent upon governmental programs for meeting their needs, including their needs for health care. There is confusion and lack of consensus about such basic matters as the meaning of "handicap" and the definition of discrimination. One unfortunate source of confusion is Section 504 itself, which defines as handicapped any person who has a "physical or mental impairment that substantially limits one or more of the person's life activities." This definition, which does not differentiate disabled persons from persons with chronic diseases, includes many persons who are not customarily regarded as handicapped (for example, alcoholics or people with chronic physical illnesses). More confusion stems from the variety of governmental programs that serve persons who are handicapped or disabled. There is little definitional coherence or consistency among these programs; features that make handicapped persons eligible for certain programs may make them ineligible for others. There appears to be little public awareness about discrimination in the health care of handicapped persons, and there may be little

10 consensus about what should be regarded as discrimination. Discrimination is frequently thought of as treating similarly situated persons differently; however, in the context of the medical care of handicapped persons, discrimination may mean failing to treat differently situated persons differently (for example, not having an interpreter available for a deaf patient). Even among professionals, the question of what is discriminatory may prove vexing, as in the general problem of what needs should be met through mainstream care settings (that is, care in which handicapped persons are integrated with non-handicapped persons) and what needs would better be met in specialized settings. Similarly, as efforts are made to focus scarce resources where they will produce the most benefit, the physical or mental condition of patients may increasingly be suggested as criteria of eligibility for publicly supported programs. A given amount of dollars may benefit more people if it is focused on the least severely disabled people. An assessment of the health care of any group can only be made in comparative terms—comparison across groups, comparison across time, or comparison against ideals. A difficulty in assessing the care of handicapped persons is the lack of comparison groups. The adequacy of care received by spinal-cord-injured patients cannot be assessed, for example, by comparing the amount of care received in a period of time with the amount of care received by another group of patients. The adequacy of care of persons with particular medical or psychological needs can only be assessed in comparison with an ideal or some other independent criteria. In considering this problem in the assessment of the health care of handicapped persons, the committee tentatively agreed that the adequacy of such care might usefully be judged on two bases, both of which are empirically difficult to apply. First, is the care provided to handicapped persons equally effective, in relation to existing knowledge, as the care received by non-handicapped persons? Second, does the care of handicapped persons unnecessarily restrict their autonomy and independence? Because of differences in needs, a simplistic goal of equality of services makes little sense in comparing the health care of handicapped persons and the rest of the population. It is more appropriate to think in terms of equal effectiveness of care, because treatment that ignores particular needs of handicapped persons can produce unsatisfactory results. In providing care for health problems that handicapped people share with non-handicapped people, the goal of equally effective care can be approached by attention to architectural barriers, communication aids, and sensitive and knowledgeable personnel. Few data are available that address the question of whether equally effective care is provided to handicapped persons when they develop the same medical conditions (exclusive of their handicaps) as non-handicapped persons. Most attention under Section 504 has been on issues that arise at the point of delivery of medical care, but the goal of equally effective care can also be considered in a broader context. It can be questioned whether health care needs that are unique to people with

11 particular disabling conditions are being met as effectively, within the limits of our knowledge in biomedical and behavioral sciences, as are the acute care needs of most of the American people. The answer can be sought by considering societal priorities in allocations for various types of health care facilities and for the training of various types of health professionals and specialists, as well as by examining the types of services that are encouraged by the incentives in the reimbursement system. In all of these areas, priority appears to be on the care of persons with acute diseases rather than persons with chronic illnesses or disabilities. This probably has a profound effect on the adequacy of care received by handicapped and disabled persons, but it is doubtful whether problems of societal priorities can be addressed through the Section 504 prohibition on discrimination. However, if the particular health care needs of handicapped and disabled persons are to be met adequately, established patterns of financing and availability of facilities and personnel must be questioned. Only then will the depth of the societal commitment, manifested by the passage of Section 504, be clear. The second criterion of care for handicapped persons—whether it promotes or hampers their independence and autonomy—is important because societal responses to their plight have too often demanded the sacrifice of independence or of dependency. The committee concluded that, as with the criteria of equal effectiveness, serious problems exist today in providing care to handicapped persons in ways that make use of their knowledge and ability and, hence, that encourage their independence. Problems range from the work disincentives that are structured into federal programs on which many handicapped persons must depend for their medical care to the failure of health care personnel to recognize and use handicapped patients' own knowledge, experience, and capabilities in the management of their medical problems. In its examination of health care of handicapped persons, the committee identified a number of deterrents to change. One obstacle is economic; there will be additional costs associated with solving many of the problems discussed in Chapter 4. Furthermore, because many handicapped and disabled people are dependent upon government programs for their care, they are vulnerable to reductions in services in the name of cost containment. Handicapped persons are also likely to continue to face other obstacles that have an economic rationale, such as problems in obtaining health insurance, the waiting period of 29 months for disability coverage under Medicare, state variations in coverage under Medicaid, refusal of many providers to accept Medicaid, use of medical screens (to exclude potentially heavy users of services) in insurance and in prepaid health care settings, and nursing homes' discrimination against "heavy-care patients" when reimbursement levels are fixed. Various conceptual problems complicate the task of assessing empirically the adequacy of health care of handicapped persons. For example, research on equity or fairness in health care has generally rested on the premise that need, not such factors as income or race, should determine whether a person obtains health care. Although this

12 idea is quite applicable to the health care of handicapped persons, applying it operationally in research is problematic, except, perhaps, in some small-scale studies. It would be difficult or impossible to identify handicapped and non-handicapped populations that are equivalent in need for care and that can, thus, be meaningfully compared in terms of use of services. Some handicapping or chronic conditions (such as cystic fibrosis) produce greater mortality, morbidity, and use of health services, while other disabilities may be a secondary effect of other chronic conditions associated with the use of health services, such as blindness resulting from diabetes. Thus, it is difficult to find a common basis on which to compare the health care of the handicapped with that of other persons to find whether such care is affected by factors other than need. However, even without such comparisons, it is possible to seek to identify factors that interfere with handicapped persons' ability to obtain health care in a manner that maximizes their independence and their status as an integral part of American society. Existing data do not allow even a minimally adequate, empirical assessment of the problems experienced by handicapped persons in seeking or obtaining health care. Data problems may also impede coordination among various programs. Available information about even such basic matters as the number and characteristics of handicapped persons in the United States has serious shortcomings that will not be corrected by data from either the 1978 Social Security Survey (because of its limitation to "work disability") or from the 1980 U.S. Census (which did not collect any relevant information). The Census provides the best opportunity to collect reliable information about populations that are small and scattered and nearly impossible to survey adequately on a sample basis. The lost opportunity of the 1980 Census should be corrected in 1990, and data should be collected that would allow an adequate description of the numbers and characteristics of handicapped persons in the United States. The committee also recommends that the present lack of information about the health care of handicapped persons be given attention by the Department of Health and Human Services. More uniformity in definitions, units of measurement, and classification procedures are needed if a more adequate response is to be given the legal requirements in Section 504 and other federal legislation. Improvements could come by developing operational definitions for use in (a) compiling information about handicapped beneficiaries of federal programs, and (b) collecting information by surveys. Such definitions should be reasonably consistent with the definition set forth under Section 504: a physical or mental impairment that significantly limits a person in a major life activity, not just in terms of work disability. The definition should make clear that temporary impairments (acute conditions) are not included. Much may be learned by including questions about handicaps and disabilities in large surveys. Information about the health status of handicapped persons, where they obtain their health care, how they pay for it, what problems they experience in obtaining it, their satisfaction with it, and so forth can be obtained in surveys of the

13 general population only if measures are taken to oversample handicapped persons. Consideration should be given to developing standard questions about handicaps that can be included in any general health survey of sufficient size and be used in the presentation of results. In addition, more specific information is needed about the sources of care of handicapped persons and the problems they face in obtaining care. To be most useful, survey instruments should reflect both the types of handicap-specific problems (such as interpreters for deaf patients) that arise in the Section 504 context and problems (such as distance from specialized facilities or lack of coverage under health insurance) that do not. Information about sources of payment for care and participation in governmental programs will also increase the usefulness of such a data-collection effort. Because of sampling problems and because handicap-specific questions might have to be included to obtain useful information about handicapped persons, studies focused on particular handicapped populations may be needed to obtain good information about health care problems. In addition to research that would seek information from handicapped persons themselves about the problems they face in obtaining health care, more information is needed about systematic factors that may influence the care they receive. These include state variations in federally funded programs on which many handicapped persons are dependent, information about planning agencies' attention to the health care problems of handicapped persons, and the involvement of such persons in health planning activities. The potential impact of Section 504 in addressing problems in the health care of handicapped people is still difficult to assess. Enforcement activities to date have been limited. Section 504 may prove to be of help in solving certain problems faced by handicapped persons and in increasing societal awareness of those problems. Difficulties of architectural barriers and of communication with hearing-impaired patients are covered, at least at the regulatory level, under Section 504. Practices such as the use of medical screens, the use of physical or mental criteria in determining eligibility for programs such as the Crippled Children's Program, and discrimination against heavy-care patients in nursing homes may be inconsistent with Section 504, although the economic component of these practices should be given proper recognition in policy decisions intended to be remedies. It appears, however, that some of the most important difficulties in the health care of the handicapped persons cannot be addressed readily, if at all, under Section 504. These include the scarcity of rehabilitation personnel and facilities, limitations of health care financing programs, and stereotyping and insensitivity by some health personnel. Anti-discrimination Enforcement in Health Care Although the equal protection clause of the Fourteenth Amendment of the U.S. Constitution generally prohibits discrimination in

14 governmental activities, implementation through statutes, regulations, and court decisions is required to give practical meaning to the constitutional protection for civil rights. The necessary implementing structure is not as well developed in health as in areas such as education, employment, housing, and voting rights. Title VI of the Civil Rights Act of 1964 is clearly the most prominent civil rights statute of relevance to health, even though it does not specifically mention health. Title VI prohibits racial discrimination by providers who receive federal financial funds and requires agencies to terminate aid in the event of non-compliance. Implementing regulations issued by the Department of Health, Education, and Welfare in 1965 (and amended in 1973) prohibit the denial of services or benefits on the basis of race, color, or national origin and any form of differential or segregated treatment. These regulations make no specific reference to the obligations of health care providers, although guidelines developed in 1969 interpret the duties of such organizations in some detail. Beyond these, there are few other federal directives specifying the application of Title VI to the health care context. Enforcement of Title VI (and Section 504 of the Rehabilitation Act) in health care is the responsibility of the Office for Civil Rights (OCR) in the Department of Health and Human Services. However, only a few monitoring and compliance review activities have taken place in health care since the efforts to end policies of explicit hospital segregation in the first years after the passage of Medicare. In recent years, however, OCR has undertaken steps that may lead to more civil rights enforcement activities in health care. In large part this has been in response to legal actions undertaken by private advocacy groups and from individual complaints alleging discrimination by health care providers. With the splitting off of education activities into the Department of Education, the OCR staff in DHHS will presumably be devoted primarily to health, and OCR has announced ambitious plans in that regard. Clearly, the notion of civil rights in health is still evolving and will be greatly influenced by recent and future legal cases in this area. Increased enforcement activity under existing laws will begin to resolve many of the legal uncertainties that now exist. The first attempts to apply these laws to health care discrimination are so recent that their meaning and effects are not yet clear. In recent years, OCR (and some civil rights advocates) have shown growing interest in other statutory tools that may be used to advance the interests of groups protected by civil rights laws. These tools include the Hill-Burton program for facility construction and its successor program, the more broadly mandated National Health Planning and Resources Development Act of 1974. Although the Planning Act was not developed specifically in response to issues in the health care of minority groups, it provided for the creation of local and state planning agencies that provide a forum within which certain civil rights concerns may be addressed. To date there has been only limited explicit attention to civil rights issues within the planning program for reasons that include the

15 limited funding and authority of planning agencies and the lack of consistent federal guidance regarding the juncture of planning and civil rights. Nevertheless, the role of planning agencies has emerged as a serious issue in major civil rights cases in Wilmington, Delaware, and New Orleans, Louisiana, and regulations proposed in 1980 more explicitly linked planning and civil rights. However, without further clarification of the civil rights responsibilities of planning agencies and strengthening of their authority, their potential role in civil rights is limited. The Hill-Burton program of federal grants for hospital construction provides another basis for addressing certain problems that disproportionately affect minority groups. The Hill-Burton legislation requires recipients of its construction funds to meet requirements that prohibit discrimination on account of race, creed, or color (often called the "community service" requirement, since it can be interpreted as requiring access to all people who need the services of the facility and, presumably, who are able to pay for it) and provision of a reasonable amount of "uncompensated services" for persons unable to pay. For many years, no program of enforcement existed for the community service requirement. But regulations published in the 1970s interpret community service to require Hill-Burton recipients to participate in Medicare and Medicaid and not to discriminate against such patients. Court challenges to these regulations are still taking place, and no active enforcement program is under way. Thus, the importance of Hill-Burton in the civil rights context remains to be seen. From its review of the law and past enforcement efforts, the committee concluded that such activities have been quite limited and that existing regulations are vague when applied to health care. Although more than 15 years have elapsed since the passage of the Civil Rights Act, there still remains little guidance as to its application in health care. Because it is difficult to say what policies and practices violate Title VI, both enforcement and related research activities have been inhibited. Effective enforcement has also been limited by OCR's lack of direct authority and by the past emphasis on civil rights issues in other fields, most notably education. Further clarification and specification of the requirements of Title VI and Section 504 in health care are needed. Several policy directions that have developed out of civil rights enforcement efforts in recent years should be more widely debated and, perhaps, codified in regulations or guidelines. Examples include conclusions about physical access and availability of transportation that developed from OCR's investigation of the civil rights implications of a hospital relocation in Wilmington, Delaware; remedies for vestiges of past segregation that were developed in a Title VI investigation in New Orleans; and OCR's position on whether a showing of intent to discriminate is necessary to a finding that discrimination is occurring. In addition, clarification is needed regarding other matters such as the Title VI responsibilities of planning agencies, the

16 responsibilities of health facilities serving substantial numbers of non-English-speaking people, the Title VI responsibilities of facilities that plan to close or convert services, and the scope and nature of responsibilities of providers and planning agencies under Section 504 of the Rehabilitation Act. Also, past policy decisions that exempted private physicians from Title VI, even if they receive Medicare or Medicaid monies, should be reconsidered if the full intent of Title VI is to be realized. Despite the increased resources that the creation of DHHS may bring to civil rights enforcement in health, important resource allocation decisions must be made regarding (a) relative emphases of complaint investigations and compliance reviews and (b) the scope of compliance reviews. An examination of recent enforcement efforts and testimony before the committee forcefully demonstrates that there is no consensus on a conceptual framework for evaluating "compliance" by health care providers other than the use of aggregate measures of admissions to institutional providers itemized by racial/ethnic categories. Measures of services to those with handicaps are at an even more rudimentary stage. The committee found that there are serious shortcomings in data both for assessing compliance by health care providers and for more generally assessing overall problems in the health services provided to and/or needed by minorities and the handicapped. Such data are prerequisites to enforcement activities under present legal obligations and to the continuing process of definition as to what disparities are to be regarded as unreasonable or illegitimate in terms of civil rights laws. The committee suggests that the OCR inventory available indicators and measures of civil rights compliance, including available and potential sources of data. Much of the information contained in this report is relevant to such an inventory. The committee also recommends that OCR work with existing data-collection agencies, such as the National Center for Health Statistics, to specify, obtain, and analyze data that are relevant to OCR's responsibilities. Even more urgent is the need for close cooperation between OCR and the Health Care Financing Administration to develop measures and indicators that will help document patterns of underutilization and segregation in federally funded health care and to focus compliance review activities. However, data collection alone is a hollow exercise unless further specification can be made of what constitutes civil rights non-compliance by health care providers. Such specification was outside the mandate of this committee. Data collection and analysis are useless as compliance vehicles unless they are guided by informed judgments about possible explanations for disparities in the provision of services. This report is intended to provide materials from which such judgments can be made. Existing uncertainties and confusion in defining or measuring equity in access or quality of services, and OCR's relative lack of experience with health services, make it important that the role of OCR itself be specified more clearly. The commitment of DHHS to the

17 development and enforcement of civil rights policies in the health care context remains unclear. The statutory and regulatory framework of several health funding and planning programs includes the authorization—sometimes the mandate—for activities that pertain to civil rights, but this authorization has not effectively translated into day-to-day activities. The reforming of OCR in the new DHHS provides an opportunity to define OCR's mandate in the health arena. OCR cannot be an effective enforcement agency without clear and strong support by the leadership of DHHS and cooperation between the OCR and other DHHS program staff. The committee urges the secretary of DHHS to resolve the present administrative ambiguities about civil rights within the agency and to make plain the commitment to enforce the law's guarantees of non-discrimination. Of most immediate practical utility, perhaps, is the potential for the coordination of OCR data-collection and monitoring efforts with the efforts of the Health Care Financing Administration (HCFA) incident to reimbursement activities. The ambiguities in the definitions of discrimination in health cannot, however, be completely "solved" by administrative remedies. In the future, as in the past, the impact of OCR enforcement efforts under Title VI and Section 504 will rely in large part on the judicial interpretation of whether a disparate effect, without a showing of discriminatory intent, constitutes a legal violation. This question has been a subject of substantial judicial consideration in a variety of contexts, particularly employment and education. In the health context, judicial exploration of this issue is in the most formative stages. The guidelines issued by OCR in 1969 delineate standards on which initial judgments can be made as to whether there is a cause for concern about disparate effects, and they set out the nature of the justification that may constitute acceptable explanations for these disparities. The committee recommends that the 1969 guidelines be issued as formal regulations for DHHS, either in their present form or in a revised version that retains the essential "effects" approach to defining discrimination. While the 1969 guidelines are hardly the final word on defining discrimination in the health care field, they provide a useful place to begin the process of debate, consensus, definition, and enforcement of civil rights in the health arena. Formal proposal in the Federal Register would not only make an important statement about the commitment of DHHS to the enforcement of civil rights, but would also provide the occasion for public comment by all concerned parties that would itself prompt further refinement of basic principles. Besides civil rights enforcement per se, the enforcement of clarified community service and equal access obligations of Hill-Burton facilities could have an important impact on alleviating some circumstances that have led to the unequal treatment of minorities by institutional health care providers. Relatively little can be said about the specific scope of that potential, since the recent interpretation of the obligation has yet to be tested and

18 implemented. However, it seems likely that if OCR enforces the obligation, it will encounter problems similar to the overall problems of Title VI enforcement in health care—namely, problems of defining compliance, data collection and analysis, allocating resources to various kinds of enforcement activities, and, most critically, ensuring that OCR has the support of DHHS leadership and the cooperation of DHHS program staff. CONCLUSION Civil rights as a notion is neither simple nor static. The law and legal mechanisms are dynamic social processes that both shape and are responsive to debate and to consensus. At the same time, the various impacts of government and private health programs on different members of the population are only beginning to be appreciated. In many areas, information is not yet being sought that will help define socially acceptable or legally unacceptable disparities in health services and health status in the United States. This report is presented as a review of available information about certain disparities relating to minorities and handicapped individuals. The committee is aware of the complexities involved both in the structure and assumptions of health care in the United States and in the development of civil rights approaches, and it hopes its report will be used as a basis for the development of a clearer approach to civil rights in health and as a discussion document for improving the health of all Americans. REFERENCES The distribution of care according to need has been used as a definition of equity in the health care literature. See, for example, Lu Ann Aday, Ronald Andersen, and Gretchen V. Fleming, Health Care in the U.S.: Equitable for Whom? (Beverly Hills, CA: Sage, 1980) p. 41. Other concepts of equity that stress merit or societal contribution, rather than need, also exist. See Gene Outka, "Social Justice and Equal Access to Health Care," pp. 79-98 in Robert Veatch and Roy Branson (eds.), Ethics and Health Policy (Cambridge, MA: Ballinger, 1976). Legally, the matter of intent is of continuing controversy in civil rights law. The Supreme Court in Lau v. Nichols (44 U.S. 563 (1974)) noted that practices that have the effect of discrimination by race or national origin are barred even though no purposeful design to do so has been demonstrated. Yet the importance of intent in defining discrimination is a matter of continuing legal relevance and importance, arising in a variety of contexts, including controversies about hospital closures and relocations. However, the hospital closure/relocation issue is of growing importance to the health care of minority groups, as was stressed

19 in testimony presented to the IOM committee by Dr. John L. S. Holloman, Jr., M.D. Alan Sager, Ph.D., in 1980 testimony before the Subcommittee on Health of the House Committee on Hays and Means, presented data showing that it is a widespread phenomenon that disproportionately affects racial minorities. This element is clear in the Wilmington hospital relocation case that is summarized in Chapter 4 of this report.

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