Health Care in a Context of Civil Rights (1981)

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4 HEALTH CARE OF HANDICAPPED PERSONS "No otherwise qualified handicapped individual in the United States . . . shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."^ The prohibition against discrimination that Congress put into Section 504 of the Rehabilitation Act of 1973, as amended, reflects both the right of handicapped persons to function as integral members of society and greater public awareness of the problems that they encounter. The passage of a law, however, does not produce an automatic change in social conditions or in public perceptions and behavior. This chapter provides a brief examination of problems in the health care of handicapped persons in light of their explicit coverage by anti-discrimination legislation. As amended, the Rehabilitation Act defines as handicapped any person who has a physical or mental impairment that substantially limits one or more of the major activities of life, such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. The act also covers persons who have a record of such an impairment or who are "regarded as having" such an impairment.2 The breadth and non-specific nature of this definition cause problems in implementing the legislation, some of which are discussed in this chapter. Nevertheless, the legislative definition is used in this report. The population encompassed by the act's definition is large and diverse. (For example, the regulations mention the following categories: orthopedic, visual, speech, and hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, mental retardation, emotional illness, drug addiction, and alcoholism.) Included are persons with permanent disabilities, such as blindness, that may prevent their full and active functioning in many activities, persons with chronic conditions for which relatively close medical management is essential, persons with severe injuries who may require long periods of rehabilitation, mentally retarded persons, and persons with chronic 105

106 psychiatric problems. The health care needs of these persons are equally diverse. Some such needs are unique to persons with particular handicapping conditions. Some other needs of handicapped persons are similar to those of the general population, although some such needs can best be met by specialized personnel or in specialized facilities. Only in the most abstract sense can the single adjective "handicapped" describe such a diverse population. Deterrents to suitable health care for the handicapped include a lack of personnel trained to communicate with deaf persons, architectural barriers, policies designed to exclude persons who are regarded as potentially heavy users of services from nursing homes and health maintenance organizations, financial and regulatory barriers built into federal and state programs (including programs that have been developed to meet needs of handicapped persons), shortages in personnel and facilities to deal with certain types of disabilities and chronic conditions, and shortcomings in attitudes and knowledge among health care workers. Some of the most important deterrents (financial, resource scarcity, and attitudes) call for remedies beyond the reach of Section 504's prohibitions on discrimination. Others are addressed in the regulations implementing Section 504, although little information exists regarding the impact of the regulations. The Office for Civil Rights (OCR) in the Department of Health and Human Services (DHHS) is responsible for the enforcement of Section 504. Regulations implementing Section 504 were issued by the Department of Health, Education, and Welfare (DHEW) on May 4, 1977, and include sections on employment practices; program accessibility; preschool, elementary, secondary, and postsecondary education; and health, welfare, and other social services programs. Subpart F of the regulations states that health, welfare, and other social service programs, activities, and providers who receive or benefit from federal financial assistance may not: * deny a qualifed handicapped person these benefits or services; [A "qualified" handicapped person is defined as one who meets the essential eligibility requirements for the receipt of such services.] * afford a qualified handicapped person an opportunity to receive benefits or services that is not equal to that offered nonhandicapped persons; * provide a qualified handicapped person with benefits or services that are not as effective as the benefits or services provided to others; [Benefits or services, to be "equally effective," need not produce the "identical result or level of achievement for handicapped persons, but must afford handicapped persons equal opportunity to obtain the same result, to gain the same benefits, or to reach the same level of achievement in the most integrated setting appropriate to the person's needs."] * provide benefits or services in a manner that limits or has the effect of limiting the participation of qualified handicapped persons; or

107 * provide different or separate benefits or services to handicapped persons except where necessary to provide qualified handicapped persons with benefits and services that are as effective as those provided to others.3 The regulations also require that hospital emergency rooms provide auxiliary aids if necessary for persons with impaired sensory, manual, or speaking skills and that drug addicts and alcoholics receive non-discriminatory health services. The usefulness of Section 504 in handling many problems is uncertain. In theory, Section 504 guarantees handicapped persons access and entitlement to federally assisted health programs equal to that of other members of the population. However, such a guarantee raises many issues that are not yet fully resolved. Such regulatory terms as "equal," "effective," and "necessary" have not been conceptualized in a manner that can be easily applied in research or in civil rights compliance activities. Furthermore, shortcomings in information for comparison with non-handicapped persons make it difficult to identify differential treatment and, when identified, to determine whether it is inconsistent with Section 504. It is not yet clear when, where, to whom, and to what the discrimination prohibition applies, and the substantive meaning of discrimination in a wide variety of specific contexts is yet to be specified. The committee found little evidence of a consensus about the problems in health care that properly can be called discrimination against handicapped persons. For example, the regulations call for specific actions by health care providers based upon explicit attention to handicapping conditions, such as having interpreters or other aids available to communicate with deaf persons. To behave differently toward a person because of some characteristic of that person is to engage in behavior that fits a commonplace conception of discrimination. However, the behavior that is encouraged by the regulation is intended to operate for the benefit of the persons whose particular needs are being recognized. As such it is quite consistent with the basic ethos of medicine that emphasizes attention to the particular needs of particular patients. ISSUES OF DEFINITION AND CONCEPT Several problems of terminology should be acknowledged in a chapter about health care problems of handicapped person. First, a term such as "handicap" means more than an objective reality, such as the medical and functional characteristics cited earlier in the Section 504 definition.* The term also carries "emotional and cognitive *The regulations implementing Section 504 define "physical or mental impairment" as (a) any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the

108 baggage" that may affect the behavior of both the person with the handicap and other members of the population.4 One word—handicap— covers conditions as diverse as deafness, chronic depression, and paraplegia, and yet that word lends itself to a stereotype. Some observers, for example, have noted that some persons respond to a particular impairment as if it were a general impairment, as when people raise their voices when speaking to a blind person, address questions to relatives that handicapped patients could easily answer, or ignore the handicapped person's own expertise in managing life with the handicap. To increase awareness of the consequences of the use of labels, some commentators draw distinctions between such concepts as handicap and disability and call attention to the extent to which limitations are the result of societal responses rather than physiological conditions.^ While authors may differ in how they make this distinction, their point is that the degree of disability associated with a condition depends not only on the condition itself but also on the relationship between affected persons and their environment. Caution is required to avoid overgeneralized assumptions of the limitations that may be implied by such labels as handicapped or disabled. An additional problem of definition stems from the fact that a variety of related terms—handicapped, disabled, impaired—are used with reference to the same population or segments thereof. The Section 504 definition of handicapped reflects its purpose to prohibit discrimination on a particular basis. Other statutory definitions reflect the needs of programs, for example, to define beneficiaries of various programs. In 1978, at least 66 programs (using 16 different definitions of "handicapped" or "disabled") in the DHEW existed for populations to which Section 504 also applies.7 For example, the Social Security Act defines those eligible for "disability" insurance; Title V of the Public Health Service Act establishes diagnostic and treatment services for children who are "crippled"; the Rehabilitation, Comprehensive Services and Developmental Disabilities Amendments of 1978 provide specific programs and benefits to those who are "developmentally disabled." Although some of the same people may be included under numerous definitions, it is apparent that definitions can affect the availability of certain benefits for some groups or individuals.® Differences in definitions create serious problems in data collection and in program management. Data from different programs following body systems: neurological; musculo-skeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine or (b) any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.5

109 are frequently hard to compare, causing difficulties in determining how many people are handicapped or disabled and what services they receive. In addition, operational definitions in surveys of handicapped persons must inevitably depart from the Section 504 definition, which defines handicap in terms of an impairment "that substantially limits one or more major life activities," a record of such an impairment, or being regarded as having such an impairment. Although such a definition may be appropriate to addressing the problem of discrimination related to a handicap, the definition is too vague for research and program management purposes. It would be difficult to enumerate people who have a record of such an impairment and probably would be impossible to enumerate people who "are regarded" (by whom?) as having such an impairment. The Section 504 definition does not clearly differentiate handicapped persons (who may or may not have a disease or illness) from people with diseases or illnesses. This is a source of confusion about such matters as what problems are peculiar to handicapped people and what problems pertain to patients in general. This confusion also complicates the collection of relevant data. The research use of the Section 504 definition, as it now stands, probably would result in the inclusion of persons whose life activities were limited temporarily because of acute conditions. In addition, almost all conditions listed in the Section 504 definition are present to some degree in many people who are not regarded by themselves or by others as handicapped, although such conditions may cause them varying degrees of difficulty in performing "major life activities." Although Section 504 prohibits discrimination because of any such condition, it would be difficult to attempt to count all such people in any survey that is trying to enumerate the disabled or handicapped persons in a population. Any good survey must have clear operational definitions about such matters as who is to be included within the boundaries of the survey; in surveys relevant to the concerns of this chapter such definitions are most commonly stated in terms of ability to fulfill various types of roles, such as work. However, the question of whether one is able to work is not the same as the question of whether one falls within the Section 504 definition of handicapped, because, for example, many people who work also have an "impairment that affects a major life activity." Thus, it probably is inevitable that the population about which data exist will never coincide completely with the population against whom discrimination is prohibited by Section 504. This problem bears scrutiny by those concerned with issues of parity and discrimination toward handicapped persons, including the OCR. Operational definitions of handicapping conditions are clearly feasible. Legal tests may lead to clearer specifications.

110 SIZE AND DEMOGRAPHIC CHARACTERISTICS OF THE HANDICAPPED POPULATION Three general observations can be made about the population of handicapped and disabled persons in the United States. First, it is a significant proportion of the U.S. population. Second, handicapped persons are found in disproportionate numbers among the elderly, the poor, and minorities. Thus, they are vulnerable to a variety of forms of discrimination that their disabilities can heighten. They also are likely to require governmental support to meet their health care and other needs. Third, many serious problems characterize the statistics about this population. A recent review properly describes the data as "scattered, confused, and confusing."^ Estimates of the number of handicapped persons vary greatly, primarily because agencies or organizations collecting the data use different methods of gathering information and different terms to define the population. At the federal level, for example, data are collected on "impairments" and "chronic activity limitations" by the National Center for Health Statistics, but the Bureau of the Census and the Social Security Administration (SSA) collect information on "disability."* (The one ongoing enumeration of the total population is the U.S. Census, which decided against including questions regarding handicaps in the 1980 census. Thus the opportunity to collect data on all handicapped persons was lost until 1990.) For the most part, these surveys sample different populations in different years, exclude the institutionalized population, and are usually based on respondents' reports of their own status. Such methods have important limitations. For example, whether persons perceive themselves as disabled undoubtedly depends upon a variety of factors in addition to their "objective" condition; it may be influenced, for example, by the way that they have been defined and treated by others and by the nature of their work. Some conditions may be underreported in household surveys because of shame or embarrassment. The most comprehensive and current data on disability come from the Health Interview Survey conducted by the National Center for Health Statistics in 1977. The data on seven common "impairments" are listed in Table 22. Although the table does not include mentally ill or mentally retarded persons, and includes an unknown proportion of persons with a variety of chronic conditions, the number of impairments listed in Table 22 totals more than 41 million. The number of persons who reported more than one impairment is not known. *The most recent available SSA data are from the 1972 survey of disabled and non-disabled adults. Because the data are old, they are not reported here. In general, however, they are consistent with the general characteristics of the disabled that are described here.10 Data from a 1978 survey of disabled adults by the Social Security Administration are not yet available, but are confined to persons with work disability.

Ill Table 22. ESTIMATES OF PERSONS WITH SELECTED IMPAIRMENTS BY AGE AND SEX: UNITED STATES, 1977 (in thousands) Age Type Impairment by Sex Total 17 17-44 45-64 65 + Blind and visually Impaired Total 11,415 678 2,877 2,959 4,902 Male 5,910 436 1,891 1,702 1,881 Female 5,505 241 986 1,257 3,021 Deaf and Hearing Impaired Total 16,219 856 3,480 5,365 6,518 Male 8,925 489 2,093 3,233 3,110 Female 7,924 366 1,387 2,133 3,408 Speech Impaired Total 1,995 913 555 315 212 Male 1,306 606 366 208 127 Female 688 307 189 107 86 Paralysis Total 1,532 121 353 470 588 Male 803 67 188 270 279 Female 729 55 165 200 309 Orthopedic Handicap — Upper Extremities Total 2,500 105 934 827 634 Male 1,486 69 671 479 268 Female 1,014 36 264 348 366 Orthopedic Handicap-- Lower Extremities Total 7,147 1,124 2,491 1,914 1,618 Male 3,643 634 1,466 951 592 Female 3,503 490 1,025 963 1,025 Absence of Major Extremities Total 358 13 70 136 138 Male 252 8 53 109 82 Female 106 6 17 27 56 SOURCE: National Center for Health Statistics, unpublished data from the 1977 Health Interview Survey. Approximately two-thirds of all reported impairments are in the two categories of "deaf and hearing impaired" (more than 16 million) and "blind and visually impaired" (more than 11 million). Over 7 million people report "orthopedic handicaps" of the lower extremities, with the exception of speech impairments (almost 2 million), the prevalence of impairments increases with age. For most impairments, men outnumber women, but after age 65, the ratio is reversed, presumably because of the greater life expectancy of women.

112 Persons reporting limitation of activity due to chronic conditions made up approximately 13 percent of the non-institutionalized population in the mid-1970s (Table 23). The data show that limitation of activity increases with age, while more men than women and more blacks than whites report activity limitations. A larger proportion of persons below the poverty level report work disability (which may be the cause of their poverty) than do those with incomes above poverty level. Estimates of the number of persons handicapped because of "mental impairment" are difficult to make. For psychiatric disorders, persons under active treatment at any particular time are only a part of the population that might properly be included in prevalence figures, and attempts to estimate the prevalence of psychiatric disorders in the community are open to question on several grounds.^ Nevertheless, some estimates of the prevalence of many psychiatric conditions can be made based upon projections from local studies. A recent literature review by a committee from the American Psychiatric Assocation provides estimates for a number of conditions. The schizophrenic population is put at approximately 1.1 million persons (of whom an estimated 200,000 are hospitalized). An estimated 600,000-800,000 persons (most of whom are in the community) have manic-depressive disease, and an estimated 600,000-1,250,000 non-institutionalized persons have senile psychoses.12 More than 250,000 nursing home residents are reported to have mental disorders.13 Estimates of the number of alcoholics or alcohol abusers range from 9 to 13 million, and estimates (and definitions) of drug abusers vary widely; between 1 and 2 million people are estimated to be "drug dependent."" The President's Commission on Mental Health estimates the number of persons with neuroses to be between 20 and 30 million persons, with another 15 million having "personality disorders."15 Many of these figures are imprecise and of uncertain relevance to Section 504, because such persons are (and should be) unlabeled in the community and, thus, not suffer the discrimination that may follow from the attachment of a label. Although others may respond negatively to their behavior, it seems unlikely that Section 504 will be interpreted to mean that people cannot be treated differently because of their behavior, and it is probably inevitable that people who are, for example, unpleasant to the staff in a hospital will receive less attention from the staff. The attribution of such unpleasantness to "mental impairment," thereby making differential treatment of unpleasant persons a violation of Section 504, does not seem to be a useful direction in which to move. The mentally retarded population is estimated to include approximately 600,000 moderately, severely, and profoundly retarded persons (IQ below 50) and 2-6 million mildly retarded persons (IQ 50-70). Approximately one-third of retarded persons suffer multiple handicaps, including mental illness, epilepsy, cerebral palsy, and other disabilities.16

113 Table 23. SELF-ASSESSMENT OF HEALTH AND LIMITATION OF ACTIVITY, ACCORDING TO SELECTED CHARACTERISTICS: UNITED STATES, 1977 With limitation of activity Limited in amount or kind of major activity Unable to carry on major activity Self -assessment of health as fair or poor Total Limited but not in major activity Characteristic Total 1,2,3,4 11.9 Percent of Population 13.0 3.0 6.5 3.4 Age Under 17 years 4.2 3.4 1.5 1.7 0.2 17-44 years 8.5 8.1 2.8 4.1 1.2 45-64 years 22.0 23.1 4.5 12.3 6.2 65 years and over 29.9 43.0 5.7 20.1 17.2 Sex2 Male 11.4 14.1 3.0 5.2 s.a Female 12.5 12.0 3.0 7.6 1.5 Race2 White 10.9 12.8 3.1 6.4 3.2 Black 20.8 15.9 2.4 7.9 S.< Family Income2 Less than $5,000 24.2 22.2 3.9 11.3 7.1 $5,000-39,999 16.1 15.8 3.0 7.8 4.9 $10,000-$14,999 10.9 12.0 2.9 6.2 2.9 $15,000-$24,999 7.5 10.0 2.9 4.8 2.3 $25,000 or more 5.2 8.8 3.1 4.2 l.S Geographic region2 Northeast 10.8 12.0 2.8 6.1 3.2 North Central 10.5 12.3 2.9 6.5 2.9 South 15.0 14.0 2.8 7.0 4.1 West 10.0 13.5 3.8 6.3 3.9 Location of residence2 Within SMSA 10.9 12.4 3.0 6.2 3.2 Outside SMSA 14.2 14.2 3.1 7.2 3.9 1Data are based on household interviews of a sample of the civilian non-institutionalized population. 2Age adjusted by the direct method to the 1970 civilian non-institutionalized population, using 4 age intervals. -Includes all other races not shown separately. 4 includes unknown family income. SOURCE: Division of Health Interview Statistics, National Center for Health Statistics: Data are from the Health Interview Survey and are based on household interviews of a sample of the civilian non-institutionalized population.

114 ISSUES IN ASSESSING HEALTH CARE PROBLEMS OF HANDICAPPED PERSONS "Health" and the Limits of the Medical Model The needs of handicapped persons frequently are for services not properly called "medical," but rather are social, psychological, and/or rehabilitative. Thus, the question of adequacy of services for handicapped persons is not only a question of whether they receive the needed amount of medical services but also whether they receive the appropriate type of services. Proper coordination and priorities in services require attention not only to prevent handicapped persons from being underserved (by not receiving needed diagnostic, therapeutic, or rehabilitative services), but also from being overserved (and unnecessarily losing some degree of independence), or misserved (as by sterilization based upon incorrect assumptions about a handicapped woman's ability to carry or care for a baby). Use of Health Services Persons who have conditions that limit their activity make more use of physicians and hospitals than do other persons (Table 24), which would be expected from their greater incidence of acute conditions and the fact that almost half of this population is older than 65. However, such data do not necessarily mean that their health care needs are being adequately served, because data on need for services are generally not available for handicapped and disabled persons. An additional problem in interpreting statistics on use of medical services is that, for some disabling conditions, higher rates of use may indicate poor quality of initial care. For example, a spinal cord injury not properly treated at the outset can increase and protract the care required. Available data on dental care of disabled persons indicate that the most seriously disabled see a dentist much less often that do other people (Table 24). Although such data do not translate directly into unmet need for care, it seems likely that there are shortcomings in the dental care of disabled persons. Difficulties of Assessing Need The variety of disabling conditions listed in the Section 504 regulations makes it necessary to recognize the differences among handicapping conditions as they affect access to and needs for health care. The health care needs of persons with spinal cord injuries differ from those of deaf persons, and deterrents to care for one may not be deterrents for the other. Furthermore, persons with similar handicaps can vary in their needs and the obstacles they encounter because of age, sex, resources, occupation, and the like. Diversity

115 Table 24. AGE-ADJUSTED PERCENTAGES OR RATES OF SELECTED HEALTH CHARACTERISTICS, BY CHRONIC ACTIVITY LIMITATION STATUS: UNITED STATES, 1974 With limitation of activity Limited In amount or kind of major activity1 Limited but not In major Total activity1 Unable to carry on major activity1 With no Total limitation Health characteristic population of activity Percent of persons with one or more physician visits within a year of Interview2 Number of physician visits per person per year2 Number of physician visits In the office per person per year2 Percent of persons with one or more short-stay hospital episodes within a year of interview2 Number of discharges from short-stay hospital per 100 persons per year2 Average length of stay for discharges from short-stay hospital3 Percent of persons with one or more dental visits within a year of interview2 Number of dental visits per person per year2 Incidence of acute conditions per 100 persons per year2 Number of persons Injured per 100 persons per year2 Days of restricted activity per person per year2 Days of bed disability per person per year2 75.3 4.9 3.4 10.7 14.1 .4 49.3 1.7 175.7 28.5 17.2 6.7 73.1 4.1 2.9 •.7 10.5 •.5 50.3 1.7 170.5 27.1 10.2 4.2 87.9 86.0 10.2 6.6 33.3 12.3 47.8 36.6 7.3 4.9 21.6 14.4 18.6 8.2 56.8 2.1 216.9 212.2 31.9 86.2 11.3 7.4 22.0 31.8 9.S 44.7 232.1 43.6 50.6 26.1 50.5 90.6 14.0 8.6 41.6 81.3 19.2 30.2 1.1 183.0 100.0 48.8 18.9 8.5 16.7 1Major activity refers to ability to work, keep house, or engage In school or preschool activities. 2Age adjusted, by the direct method to the age distribution of the total, civilian, nonlnstitutionalized population of the United States. 3Age adjusted, by the direct method, to the age distribution of the discharges from short-stay hospitals of the total, civilian, non-Institutionalized population of the United States. SOURCE: Vital and Health Statistics, Series 10, Number 112. National Center for Health Statistics.

116 among handicapped persons, as well as the variety of services that may be needed, and settings in which they may be provided, greatly complicate the implementation of Section 504 as it affects health care. Three different types of health care can be distinguished to meet the needs of handicapped persons: (1) General health care, or "mainstream care" Handicapped and non-handicapped persons share certain basic health care needs and expectations. It is reasonable to expect a blind person with an acute ear infection, for example, to have similar medical needs as would a seeing person with the same condition. Questions of equity or discrimination in such instances would rest on whether there are unreasonable interferences with the individual's ability to get appropriate medical care when needed, not in the nature of the care itself. A possible effect of Section 504 may be to increase the availability of mainstream medical care to handicapped people. That would be consistent with the larger social movement to increase the independence of, and decrease the isolation or segregaton of, handicapped persons in the United States. (2) General health care that, for some types of handicap, may require special training or facilities to provide A difficulty in attempting to provide mainstream care to handicapped persons is that even the general medical needs of some handicapped persons are best met by professionals who have received specialized training and in facilities that have specialized equipment. Thus, for example, the medical management of the general health care of paraplegic patients is best carried out by physicians who are knowledgeable about the threat of kidney infection. A variety of other examples comes from the field of dental care: * Persons with Down's syndrome require frequent dental visits and maintenance of good oral hygiene because of their propensity for periodontal disease; yet some also have short attention spans and high anxiety levels, which require special attention and sensitivity by the dentist or dental hygienist. * Some drugs used to control seizure episodes for individuals with epilepsy also induce excessive gum tissue growth, which can become infected. In treating such individuals, however, the dentist must be prepared to deal with seizures, which may occur during treatment. * Some persons with cerebral palsy exhibit bruxing, or grinding of the teeth and also may have difficulty swallowing, resulting in rapid buildup of plaque caused by their teeth and gums being continuously bathed in saliva. They may also have continual involuntary movements, which require the dentist to devise methods to safely control such movement in order to provide care.17 The care of patients with many chronic diseases is best carried out by specialists. A physician who declines to accept a patient with a condition about which he lacks experience or training might be seen as denying that patient access to mainstream care. However, if such

117 actions are motivated by a concern that the patient receives proper care, it is unlikely that objections would be raised, except perhaps in situations where no appropriate referral is made or where treatment is refused by all sources of care. Nevertheless, this illustrates the complexity of the issues raised by Section 504. Some general care needs of handicapped persons, needs shared by the general population, can best be met in specialized (non-mainstream) situations. To date, little attention has been given to the question of whether and how to increase access to mainstream care settings and, if so, how also to provide specialized care for needs that handicapped persons share with others. Does Section 504 in principle require providers to be prepared to meet specialized needs associated with certain handicapping conditions? Should, for example, dentists participating in Medicaid be required under Section 504 to treat otherwise eligible patients with cerebral palsy? More important to the intent of Section 504, would the needs of such patients be furthered by regulatory requirements that move in such a direction? A negative answer to such a question, however, need not be considered a categorically negative answer to the question of whether providers should be better prepared to meet the general medical needs of handicapped persons. Compliance requirements that apply to all providers might be desirable to assure that certain general health care needs of persons with relatively common handicaps are met. Yet such requirements should reflect the fact that some needs are best met by providers with specialized knowledge and facilities, particularly when those needs are infrequent in the population. An alternative approach might seek to ensure that the needed specialized services and knowledge are available in each specified geographic region, even though this is not consistent with the mainstreaming goal. (3) Specialized treatment or management of the handicapping condition Certain needs of handicapped persons stem directly from their condition and are specific to particular kinds of handicaps. Obtaining services for these needs raises problems of the supply and distribution of appropriate, highly specialized services and manpower. Many persons concerned with the interests of handicapped and chronically disabled persons see serious shortcomings in provision of care, ranging from the treatment of the chronically mentally ill, to the initial therapy of the spinal-cord-injured patient, and the rehabilitation of the person who has had a stroke. The adequacy of societal resources for meeting the specialized needs of certain handicapped and disabled populations may only occasionally raise issues that can be addressed under Section 504, which contains no provisions for funding needed services. Yet that adequacy of resources, along with the soundness and breadth of health professionals' approaches to care, may be of fundamental importance to meeting many of the needs of the handicapped. Because handicapped persons may have particular needs for care, comparisons of the care received by the handicapped and non-handicapped shed little light on whether there are differences in the receipt of needed care. An assessment of the care of handicapped persons, thus,

118 cannot be based on comparison with patterns of care received by other groups. Comparisons with ideals are more appropriate. In considering this problem, the committee agreed on two tentative bases on which to assess the care of handicapped persons. First, is the care they receive equally effective, in relation to existing knowledge, as the care received by other patients? Second, does the care of handicapped persons unnecessarily restrict their autonomy and independence? While neither of these criteria is readily subject to measurement, each calls attention to an important aspect of the care of people with particular needs. The committee has attempted to make use of these concepts in assessing the care of handicapped persons. DETERRENTS TO HEALTH CARE FOR HANDICAPPED PERSONS In this section, we examine deterrents to the use of health care services by handicapped individuals. Although the deterrents most often cited in the literature and in comments received by the committee are discussed individually below, each can operate in concert with others to impede or prevent handicapped persons from obtaining care. Some of these deterrents can be eliminated by enforcement of Section 504 and its regulations, by education of providers, by efforts to inform and educate handicapped persons of their rights under Section 504, and by programs that may assist them in obtaining needed medical care. However, other deterrents, such as those built into specific programs, may require legislative changes. And some problems can be eliminated only through broader social changes that are relatively unaffected by government regulation. Attitudes/Knowledge of Health Professionals Negative or inappropriate attitudes of health professionals toward handicapped persons can be subtle and insidious impediments to care and are among the problems cited most often by handicapped persons and others concerned with their rights. The attitudes of health care personnel are often perceived by handicapped individuals as reflecting insensitivity, lack of concern, and a devaluation of patients as persons. Such attitudes can lead to patient dissatisfaction with health services and to failure of a provider to treat a handicapped person appropriately or even to treat at all.^8 The problem of attitude is complex and is not confined to health professionals. Persons with visible handicaps have long been treated with a mixture of fear, uneasiness, and paternalism and have often been subject to discrimination because of assumptions about their "differences." Biases against the different obviously can and do operate in the health care sector; at the extremes this can be seen in instances of lesser efforts being made to resuscitate alcoholics or resistance to actively treating complications in newborns with Down's syndrome. *

119 Other factors that can influence attitudes of care by providers include ignorance or lack of familiarity with certain handicapping conditions, which may result in lack of confidence and fears of inadequacy in treating such persons2^ and, perhaps, also fears of malpractice; the traditional emphasis in medicine on acute illness and "healing," which leads some physicians to view the chronically disabled as "failures" of medicine and be disinclined to accept them as patients; and the tendency of physicians to address the needs of handicapped persons in narrow medical terms, rather than in terms of broader social support. Some providers treat handicapped persons in an overprotective fashion that encourages unnecessary dependency, failing to recognize that "disability does not mean inability."21 While such complaints are not unique to handicapped persons, excessively paternalistic treatment is viewed by many of the handicapped population as potentially destructive of their desire to be as independent as possible.22 It may also cause providers to fail to recognize that their patients' own knowledge and experience in dealing with their handicap is a valuable source of information that can be used beneficially in their care.23 An example offered in testimony to the committee was the case of a spinal-cord-injured patient whose knowledge of his body's idiosyncratic responses to infection was ignored by health professionals who incorrectly interpreted those responses as symptoms of an adverse drug reaction.24 Similarly, persons capable of managing their own catheterization outside of the hospital may not be allowed to do so as inpatients because the staff assumes they are incapable. In order to promote more appropriate attitudes and care, many commentators have called for better training of health professionals to meet the medical, rehabilitative, and psychosocial needs of handicapped persons.25 Studies of dentists show, for example, that providers who receive instruction in the care of handicapped persons as part of their undergraduate or graduate training are more likely to treat such patients in their practices.26 Although it is unrealistic to expect all health care personnel to be knowledgeable about the specific needs of all handicapped individuals, the training that health care personnel receive could, nevertheless, help in dispelling myths and stereotypes, in recognizing the differences among handicapping conditions as well as the individual nature of functional capabilities, and in encouraging non-paternalistic attitudes toward handicapped persons. Several questions merit consideration: What training—both in attitudes and skills—should all students receive, and what training is most realistically confined to a specialized subset of health professionals? What methods can be used to incorporate needed training into the curricula? A number of dental schools, for example, have instituted programs for care of the disabled, which might serve as models for other health care professional schools.27 Additionally, postgraduate education programs on care of handicapped persons could be expanded to sensitize and educate those providers already in practice, as well as to reinforce any earlier training.

120 Supply and Distribution of Resources and Services The uneven distribution of health care resources and services in the United States—both geographically and by specialty—is a deterrent to the care for many persons who are handicapped, particularly those in rural and inner city areas where manpower and facilities usually are most scarce. Although Section 504 provisions seem not to be the issue, a number of specific problems have been identified in recent years: * The Special Populations Subpanel of the President's Commission on Mental Health estimated that only 15 mental health programs for deaf persons existed throughout the United States, none of which were in a community mental health center and only a small number of which were fully functional. In addition, only 20 psychiatrists, 16 psychologists, 19 social workers, and 27 psychiatric nurses were working with deaf persons and few of these personnel were deaf themselves or able to communicate in sign language. The commission concluded that 85 percent of deaf persons needing mental health services were not receiving them because the services were not available. * Less than 1 percent of all practicing physicians (1,742 in 1977) specialize in physical medicine and rehabilitation.29 One estimate suggests that demand for physiatrists will exceed supply by 100 percent by 1990.30 * The number of personnel providing general health care services to handicapped persons is unknown, nor is it known how many within that group have the knowledge of management and treatment of problems of handicapping conditions to enable them to provide the most appropriate general care. Few health care professional schools offer such training. One proposed solution to the problem of supply and distribution of health services is to establish multi-disciplinary, comprehensive state/regional treatment centers to meet the needs of the handicapped population, with home care and outreach services made available to persons needing care in rural and remote areas.31 A variety of other approaches may also be helpful, but the problem deserves serious attention. Physical Deterrents Physical deterrents to health care for handicapped persons include a lack of public transportation for the disabled and various types of architectural barriers. These largely are high curbs and stairs that are not negotiable, and doors that are too narrow for persons in wheelchairs. Such barriers prevent some persons from entering buildings or treatment areas and preclude their use of some services. Hospital rooms that are not designed to give persons in wheelchairs access to toilets can limit the ability of some handicapped patients to function independently.

121 The Architectural Barriers Act of 1968 (P.L. 90-480) requires special design features for handicapped persons in all buildings that receive funding through federal grants or loans. These features include certain numbers and design of parking spaces; walkways and curbs that facilitate movement of wheelchairs or crutches; accessible routes and entrances; and reachable, visible, and audible signals and controls—for example, elevator control buttons accessible to wheelchair occupants, raised letters or numerals at corridor doors to identify each floor for those who are visually handicapped, and audible elevator call signals.32 Compliance with governmental standards and specifications is enforced by the Architectural and Transportation Barriers Compliance Board, which was established by the Rehabilitation Act of 1973. In addition, regulations for Section 504 specify that each program or activity of a recipient of federal funds "when viewed in its entirety" be readily accessible to handicapped persons (that is, the regulations do not require a recipient to make each of its existing facilities or every part of a facility accessible and usable to handicapped persons). Compliance may be accomplished, for example, by home visits, assigning aids to beneficiaries, or delivering services at alternate sites that are accessible. New construction or alteration of existing facilities must conform to accessibility standards established by the American National Standards Institute, Inc., examples of which were cited above.33 Little information is available about how often architectural barriers impede access to health services, the impact of such barriers, or even the number of facilities or programs that are in compliance with the requirements. (The OCR, DHHS, is responsible for reviewing such compliance in health care settings, but has engaged in no compliance activities to date.) However, architectural barriers were not reported as one of the major barriers to obtaining care by disabled persons in the Health Interview Survey. Although most of the physical plants of most hospitals seem likely to be relatively free of barriers to wheelchairs, it is not known how many settings, such as physician or dental offices, are located in buildings that have architectural barriers. The Section 504 regulations allow federal fund recipients that have fewer than 15 employees, and that are unable to comply with the accessibility provisions without significant alteration to existing facilities, to refer handicapped persons to other providers whose services are accessible. The inability to get to a health care provider or facility was frequently identified as a problem by disabled persons responding to the Health Interview Survey in 1977." Reports of limitations in obtaining care for this reason were four times as common among the disabled as among the fit. Deficiencies in, or lack of, public transportation systems in accommodating the handicapped can be a formidable barrier to their receiving care, although no data are available on the topic. The Section 504 regulations for health services do not refer specifically to transportation barriers. The Rehabilitation,

122 Comprehensive Services, and Developmental Disabilities Amendments of 1978 enable DHHS to provide financial assistance to remove transportation barriers as well as architectural and communication barriers if a study has demonstrated the need for such action, and the President has approved the expenditures of funds for this purpose.36 Medicaid, which provides medical assistance for many disabled persons, requires that states provide or arrange for transportation if necessary to make all covered services available to all eligible individuals on an equitable basis.37 This requirement is potentially important for many handicapped persons, but the extent to which states are providing such services in their Medicaid programs is unknown. In some rural communities, for example, it has been alleged that transportation assistance is provided to Medicaid eligible persons only if they satisfy a set of unwritten eligibility requirements and if a welfare worker has some time and is willing to transport them.^8 In response to Section 504, the Department of Transportation issued regulations that pertain to the accessibility of buses and subway cars to wheelchair users. Cost factors have made this requirement controversial, and legislation has been proposed to allow localities to set up alternative transit services for handicapped residents. The issue here is similar to other situations in which mainstream accommodation is at stake: when is it reasonable to serve the needs of handicapped persons through separate or specialized facilities rather than making the adaptations necessary to meet those needs in the general or mainstream system? Communication Deterrents Many persons are limited in their ability to communicate, some severely so, because of varying types and degrees of hearing and speech impairments and conditions. Communication problems in health care settings can result in patients' needs being ignored or misunderstood, with possibly serious consequences. For example, communication difficulties associated with handicaps have been alleged to have resulted in erroneous diagnoses of mental retardation. Dissatisfaction with health services and a reluctance to seek care when needed may result not only from difficult communication, but also from patients being treated as intellectually deficient or emotionally disturbed.40 Estimates of the number of people with speech difficulties are quite imprecise, ranging from 1 million to 8 million persons (Table 22).41 The type of aid that persons in this population need to facilitate communication in a health care setting depends upon their specific speech impairment. Impairment of hearing is the single most prevalent impairment in the United States, although estimates of the number of persons with some type of hearing loss vary widely (Table 22).42 The National Association of the Deaf estimates that there are 14.5 million people who can be considered hearing impaired (with some degree of hearing

123 loss in one or both ears). Seven million of these have significant bilateral loss (substantial difficulty hearing in both ears) and 2 million can be considered deaf (cannot hear or understand speech). Of these 2 million deaf persons, approximately 450,000 are prevocationally deaf (they become deaf prior to 19 years of age); this population is most likely to communicate through such modes as sign. Forty percent of all hearing impairments occur in the population 65 years or older (Table 22).43 The diversity of the hearing-impaired population has important implications for the modes of communication that are feasible for particular patients, since proficiency in both English and in sign language is related to age at onset of deafness and to education. Under traditional assumptions, persons with hearing impairments have been viewed as responsible for assuring that communication can take place, either via written notes or by bringing someone with them to help them communicate. Health providers were thus absolved of responsibility for assuring effective communication with such patients.44 By contrast, the Section 504 regulations place the responsibility for communication with the provider. Hospitals that are covered by the law and that provide emergency care must ensure that means are available for communicating effectively with persons who have impaired hearing and who require emergency treatment. In addition, recipients of federal funds who employ 15 or more persons are required to provide appropriate auxiliary aids to persons with sensory, manual, or speaking disabilities where necessary to ensure that such persons are not denied appropriate benefits or services because of their handicap. Examples of such aids include braille and tape-recorded material for the blind and interpreting for the deaf. Smaller providers also may be required to provide such aids where it would not adversely affect their ability to provide services. Although such auxiliary aids are legally required, and the hear ing-impaired population is large, no systematic information is available regarding the extent to which hearing- or speech-impaired persons are unable to obtain adequate health care because of communication problems. Some recorded cases represent situations that are not precisely addressed by the regulations, such as deaf persons unsuccessfully seeking treatment at hospital clinics or alcohol treatment centers, but not in emergency situations as addressed by the regulations. In other instances, the regulations have apparently been ignored, as in the case of a deaf woman with a skull fracture who was sent home from an emergency room in Chicago because the hospital refused to provide an interpreter. Although interpreters are one type of auxiliary aid that could be made available to hearing-impaired persons in health care facilities, the committee could locate no studies that show (1) what proportion of the hearing-impaired population would be able to take advantage of the services of interpreters were they available or (2) what impact interpreters have on health status and satisfaction with care. Some clues as to how hearing-impaired persons presently cope with communication problems in seeking health care come from a recent survey of deaf activists. (No comparable data are available for a

124 more representative sample of deaf persons.) The majority of these persons reported that they relied on written communication with hospital personnel, although the authors noted that writing is "more likely to lead to misunderstanding than sign language interpretation," and the majority of adults deafened in childhood expressed confidence in their ability to sign and to read sign.46 (This agrees with an earlier, broader survey of prevocationally deaf persons, the majority of whom rated highly their manual communication skills.47) Written communication can present serious problems for many deaf persons, particularly for persons deafened in early childhood, since their proficiency in English may be limited. With regard to reading ability, for example, deaf adults average fourth grade level.48 However, respondents to this survey encountered interpreters in the health care setting only 8 percent or less of the time.4' This low figure might be a reflection of the fact that the number of certified interpreters in the country currently is approximately 2,000 persons.50 A number of other factors further complicate the provision of interpreters for deaf persons. One is the distinction between individuals who use sign language and those who read lips or use other forms of communication not involving sign language.51- The belief that lip-readers do not need assistance in communicating is often unfounded; many lip-readers understand less than half of what is being said. The potential for misunderstandings is therefore substantial. Furthermore, many interpreters are not trained in both signing and oral interpreting, so communication problems may remain even in health care settings in which an interpreter is present. A less common problem concerns ethnic individuals who are hearing impaired and who use other than American Sign Language (sign languages differ as do spoken languages).52 A final problem in the use of interpreters is the question of privacy and confidentiality in the doctor/patient relationship. The National Registry of Interpreters for the Deaf, a national certifying organization for interpreters, does have a code of ethics that requires that interpreters protect any confidence to which they are privy. Financing Health Care The cost of health services was identified by disabled persons in the 1977 Health Interview Survey as a major obstacle to obtaining care.53 Government health care programs and private health insurance do not remove this obstacle for many handicapped persons. An array of health service programs exists for handicapped persons at federal, state, and local levels, including rehabilitation programs, community health and mental health centers, and programs for narrowly specified beneficiaries. There are important programs for the handicapped in the Department of Defense and the Veterans Administration, but most programs at the federal level come under the DHHS. Medicare, Medicaid, and Crippled Children's Services are three major health care programs serving handicapped persons. Examination of the deterrents to care that are built into these programs raises

125 that are built into these programs raises the question of whether federal and state governments, in the face of finite resources and competing interests, are in a broad sense discriminating against substantial segments of the handicapped population. Medicare is the federal health insurance program for the aged, certain disabled persons, and those suffering from chronic renal failure. The eligibility requirements and benefit structure are the same throughout the country and apply without regard to income or assets. It is administered as an insurance program. Part A of Medicare is available to persons when they reach age 65 and to those with chronic renal disease requiring dialysis or renal transplant regardless of age. Part A covers hospital services, skilled nursing home care, and home health visits for a specified number of days or number of visits. All persons aged 65 and over and all persons enrolled in Part A may elect to enroll in Part B of Medicare, which pays for physician visits, laboratory and X-ray services, outpatient hospital care, and additional home health care visits. Part B is financed by a modest monthly premium charge on enrollees and by federal taxes. It has been suggested, however, that the deductible and coinsurance features of Part B act as a deterrent to obtaining services under Medicare by the poor, who include disproportionate numbers of disabled persons.54 Furthermore, although Part B services are those most likely to meet the general health care needs of handicapped persons, providers under the program are not deemed by DHHS to be receiving federal financial assistance and are exempt from the Section 504 regulations.55 Disabled persons become eligible for Medicare benefits after they have been entitled to Social Security Disability Insurance (SSDI) benefits (based on a period of covered employment) for two years. Eligibilty for the latter benefits is contingent on a determination that the individual is "incapable of engaging in any substantial gainful activity because of a medically determinable physical or mental impairment that has lasted or can be expected to last continuously for at least 12 months or to result in death."56 When the initial 5-month period for determining disability under the disability insurance program is included, a waiting period of 29 months exists between the onset of a disabling condition and eligibility for benefits under Medicare, although in some instance coverage may be obtained under Medicaid. The waiting period was enacted in an effort to limit program costs and to direct Medicare coverage to those whose disabilities have proved to be severe and long lasting.57 However, this means that Medicare benefits are not available during the initial, often acute, phase of disability when health services are particularly needed. For example, SSDI beneficiaries in 1974 not eligible for Medicare used almost twice as many hospital days and physician visits as eligible beneficiaries.58 Early treatment may greatly affect the eventual severity of some disabilities. As an example, early placement of persons with spinal cord injuries into a medical rehabilitation program has been shown to reduce the severity of the disability.5'

126 Until quite recently, disabled persons eligible for Medicare who returned to work and then suffered a relapse had to re-establish their Medicare eligibility in an additional 24-month waiting period. This provision, which was quite inconsistent with the goal of maximizing the independence of disabled persons, was altered by the Social Security Disability Amendments of 1980, which did away with the waiting period and extended Medicare coverage for four years after a disabled person returns to work instead of one year.60 Other problems and gaps in coverage under Medicare are likely to have a disproportionate effect on handicapped persons and bring into focus the conflict that can arise between cost considerations and the goals of Section 504: * Mo coverage for optical aids, hearing aids, or dental care;61 limitations on hospital services (up to 90 days), which may constitute inadequate lengths of stay for those with severe disabilities, such as quadriplegia, paraplegia, and multiple amputations. Spinal-cord-injured people may need 120 days for the first stay. * Limitations on skilled nursing home care (100 days per benefit period, preceded by at least 3 days of hospitalization), which makes many disabled persons, particularly the elderly disabled, convert to Medicaid, with its attendant disincentives to providers and resulting discrimination (see Chapter 3). * Limitations on home health care visits (100 visits), which may force a person into an institution. * Limited psychiatric benefits, such as coverage restricted to a lifetime maximum of 190 days of inpatient psychiatric hospitalization, and a limit on annual payments for ambulatory services of $250 per patient.62 Medicaid is a federal-state matching grant program providing medical assistance for low-income persons who also meet certain eligibility requirements (for example, aged, blind, disabled, or members of families with dependent children). All states except Arizona currently participate in the program. Each state administers and operates its own program, and, subject to federal guidelines, determines eligibility and scope of benefits. States participating in Medicaid are required to offer inpatient and outpatient hospital services; laboratory and X-ray services; skilled nursing home care; home health care; physician services; family planning services; and early and periodic screening, diagnosis, and treatment (EPSDT) for children under age 21, as well as to arrange for or provide transportation to needed services. States may also provide a wide variety of optional services (for example, drugs and dental care), but the amount and extent of such services vary widely from state to state. Eligibility requirements also vary from state to state. Thus, disabled persons eligible for services in one state can be ineligible in another. Eligibility is often linked to actual or potential receipt of cash assistance under federally assisted welfare programs, but states do have the option of covering the medically needy—those

127 with incomes adequate to purchase food, clothing, and housing, but not adequate to meet the cost of medical care. Anyone receiving Supplemental Security Income (SSI) is eligible; the definition of disability under SSI is the same as that for disability insurance, except that disability for children is evaluated in terms of such factors as growth, maturation of physical and functional characteristics, and emotional and social development.63 For disabled persons who qualify, the program creates unfortunate disincentives for employment. Although employment is important to the independence of handicapped individuals, earnings above certain, often low levels result in the loss of eligibility for Medicaid services on which they may be dependent for meeting substantial medical expenses. Such persons must either find a lower-paying job in order to retain benefits, quit work, or attempt to cover their medical expenses as best they can. This is made more difficult by the fact that the health insurance connected with employment often inadequately covers expenses associated with chronic problems and excludes costs associated with treatment of conditions that existed prior to coverage. Thus, the person who has been disabled by a chronic condition may find that the costs associated with the loss of Nedicaid are so prohibitive as to make returning to work not feasible. A number of other features of the Medicaid program can result in eligible, disabled people having difficulty in getting needed care. As was described in Chapter 2, many providers are unwilling to accept Medicaid recipients as patients, citing as reasons inadequate reimbursement levels and delays in payment. In addition, fixed reimbursement levels for units of care, such as an office visit or a day of care, create disincentives to care for persons whose needs in terms of time, facilities, or personnel are greater than average. Many handicapped and disabled persons fall into that category. The President's Commission on Mental Health noted that reimbursement rates for community mental health centers and/or psychiatrists are so low that many providers refuse to participate in Medicaid and needed mental health services are not available to poor people who are mentally handicapped.64 Although all states are required to provide EPSDT services for all Medicaid recipients under 21, a study of that program by the Children's Defense Fund found that the program is especially inadequate for eligible handicapped children. Such children often become eligible for Medicaid, at least in theory, on the basis of their eligibility for the federally administered Supplemental Security Income Program. However, this does not necessarily bring them to the attention of the state-administered Medicaid program, and they may never be told about the EPSDT program. Furthermore, even if they are screened under EPSDT, many of the medical services they may need (such as physical therapy) may not be covered by their state's Medicaid program.65 There are also important limitations and variations in benefits from state to state that may affect the services that are available to handicapped persons. All states, for example, provide dental benefits for Medicaid eligible children, but not all provide such benefits for

128 eligible adults.66 The provision of many services under Medicaid are at the option of the state (such as optical aids and hearing aids) and even if such aids are provided, the state may limit the type and extent of such aids. A visually impaired person may be able to obtain regular eyeglasses, for example, but those with special problems may get limited services—the person with albumism may need a change of lenses several times per year but may only be covered for the initial lenses. Or the state may provide a hearing impaired person with only one hearing aid when two are needed. In some instances, states are accused of using subjective criteria to distinguish between the "deserving" and the "nondeserving," and factors such as age or severity of disability may be used in determining whether certain aids will be provided to disabled persons. One commentator alleges that in California electric wheelchairs appear to be made available only to persons in their 20s.67 Little attention has as yet been given to the question of whether the rationing of scarce resources on the basis of need (or on predictions regarding likelihood to benefit) is inconsistent with Section 504. Mental health services under Medicaid, as under Medicare, are limited. For example, limitations on payments, age, and services exclude persons between the ages of 21 and 65 from Medicaid reimbursement for treatment in a psychiatric facility, because such care has traditionally been a state responsibility. Furthermore, facilities in which more than half of the residents are mentally ill are subject to the "50 percent rule," which classifies them as psychiatric institutions and therefore subject to special restrictions and limitations on reimbursement. With regard to children, maintenance and services are both reimbursed for those in institutions, but only medical care is covered for those in less-restrictive settings. Coupled with the lack of mandated coverage for home health care services for those under 21 (such services are mandatory for adults), a disincentive for deinstitutionalizaton of mentally handicapped children is created.68 Crippled Children's Services Title V of the Social Security Act authorizes a program of formula grants to state health agencies for Crippled Children's Services to extend and improve services to handicapped children and to those suffering from conditions that lead to crippling, particularly in rural and economically depressed areas. Notwithstanding its title, the program now covers almost all types of medical problems. Services provided include locating handicapped children and providing medical, surgical, corrective and other assistance for diagnosis, hospitalization, and post-hospitalization care. The federal statute does not specify either the amount or type of service that states may provide under this program or what conditions are considered "crippling." A crippled child is defined as "an individual under the age of 21 who has an organic disease, defect, or condition which may hinder the achievement of normal growth and

129 development" (P.L. 94-271). All children so defined are eligible for diagnostic services. Treatment services are provided to children in financially needy families, with determination of financial need left to each state.^^ Benefits under the programs, however, cease at age 21, despite the fact that most such conditions are permanent. Coverage of medical expenses thereafter depends on the individual's or the family's resources or eligibility for other public programs. States report annually on conditions treated in children served by the program, and this information provides a minimal definition of what conditions may be covered or excluded in the reporting state. Figures for 1973 federal expenditures per client on a state-by-state basis ranged from a low of $26.90 in Washington, D.C., to a high of $249.17 in Ohio.70 Large state-by-state variations also exist in the types of conditions covered within the program.7^ In 1976, for example, Iowa reported that 22.9 percent of its caseload was mental, psychoneurotic, and personality disorders, but California reported none. Indiana led all other states with 49.8 percent of its total caseload reported as multiply handicapped, compared with a national average for the program of 24.2 percent, and North Dakota reported the lowest proportion—2.5 percent—as similarly handicapped.72 It is not clear in materials reviewed by the committee whether such variations are artifacts of variations in data-reporting systems or are due to state-level decisions to exclude certain types of handicapped children from this program and, if so, whether such exclusions stem from coverage of these types of children in other programs is not apparent. Although these three programs—Medicare, Medicaid, and Crippled Children's Services—are all intended to meet the health care needs of the disabled population, each meets only certain needs and has its own constituency and interests. Thus, each not only fails to serve "a significant portion of its potential clientele,"73 but may be poorly serving many of its beneficiaries as well. Private health insurance also is of obvious importance in the financing of health care. Policies often exclude coverage for "pre-existing conditions"—medical conditions present when a policy is taken out. This exclusion also can apply to children born with such conditions, even though the parents have health insurance coverage for themselves. Some insurance companies cover persons who have such conditons by underwriting "substandard risks"—those who for several reasons do not qualify for standard coverage. One way to underwrite such risks is a waiver or rider exempting coverage for a specific disability or form of physical impairment affecting a specified part of the body. A problem in such coverage arises when a person is hospitalized or disabled for another condition that might be construed by the insurer to be directly or indirectly caused by the waivered disability. Additional methods for underwriting substandard risks include extending the elimination period (the period for which the insurer is not responsible) and offering coverage with extra premium payments.75 It is not clear to what extent practices that result in no coverage or higher premiums for handicapped or disabled people have a sound actuarial basis rather than being based on guesses and assumptions.

130 Health insurance coverage may be available to handicapped persons who are employed through group coverage at the workplace. However, the job mobility of persons with chronic conditions (particularly those whose chronic condition developed while they were employed) may be severely constrained by questions about whether they (or their chronic condition) would be covered by insurance in a new place of work. This problem may also apply to employees who have handicapped dependents. An additional problem with handicapped dependents is that parents' insurance coverage for a handicapped child may expire when the child reaches 18 or 21. The problem of inadequate or unavailable insurance coverage also may lead a handicapped person not to seek employment at all, because of the possibility that their earnings will make them ineligible for public assistance programs, but be inadequate to cover their medical expenses. The cost of care for cystic fibrosis, as just one example, often exceeds $10,000 per person per year and may even exceed $100,000.76 Although estimates exist of the number of persons in the United States with or without some form of private health insurance coverage, no current estimates are available to determine how many handicapped persons are in each of these groups. Furthermore, the committee could locate no information regarding such matters as how many handicapped persons are covered for most or all medical costs associated with the handicapping condition, how many are paying extra premiums to cover handicap-related care, or how many have coverage that excludes such care. The major studies of how people finance their medical expenses, including the recent National Health Expenditure Survey conducted by the National Center for Health Services Research, have not collected data that would allow separate analysis of the experiences and practices of handicapped and disabled persons. Although some difficult sampling problems would have to be overcome for a national survey of this population, questions about the health status of the handicapped population, whether and where they obtain care, and how they pay for it seem too important to be ignored in the future. Medical screens Handicapped persons who may be unable to acquire private health insurance because of pre-existing conditions may face similar medical screens in certain government-assisted programs, namely, prepaid community health centers and federally qualified health maintenance organizations (HMOs). Prospective individual members may be reviewed with regard to their probable future need for continued, long-term treatment of an illness or condition—a distinct probability for many handicapped persons—and if their potential need and use of services are high, they may be excluded from participation in these programs. Medical screens resulting in handicapped persons being denied membership specifically because of their handicapping condition, however, would appear to be inconsistent with Section 504. The rationale for medical screens is one of economics. Such practices limit the organization's financial risk (potential health service costs) by using actuarial predictions of costs and establishing of capitation rates sufficient to meet those costs, enabling the

131 organization to compete effectively in the health care market. Some health centers have contended that medical screens are necessary for their economic survival. The OCR has argued that a center's use of a medical screen is discriminatory under both Section 504 and Section 330(a) of Title III of the Public Health Service Act, which requires centers to serve all persons in their catchment areas, regardless of medical condition,77 but the issue is still unresolved. In contrast, HMOs, which are subject to Title XIII of the Public Health Service Act, are not required to serve all persons in their catchment areas, although they must serve all group members, regardless of health status. HMOs, however, medically screen individuals on grounds of protecting their financial viability. Only during an open enrollment period must an HMO accept all individuals who apply (with the exception of those confined to an institution) without regard to health status.* The OCR is investigating whether medical screens are essential to the economic survival of HMOs and, if so, what the limitations should be on these screens to ensure that such organizations do not discriminate against those who are handicapped. The question remains open on how to reconcile the requirements of Section 504 with the shaky financial status and competitive position of many HMOs, if, in pursuing its goal of encouraging and supporting the development of HMOs, the government exempts HMO medical screens from Section 504, this would raise questions about the government's responsibility for the social goal of non-discrimination and would preempt a more deliberative attempt to reconcile certain economic realities of government programs with the mandate of civil rights. Long-term care Nursing homes are one of several types of facilities available to meet the long-term care needs of physically and mentally handicapped individuals, particularly the disabled elderly. Questions can be raised, however, about a number of apparently discriminatory practices and policies at both the nursing home and governmental levels. Witnesses appearing at meetings of the committee reported that handicapped individuals in nursing homes often receive fewer services and lower quality of care than other residents and in some instances are even denied basic services. One report stated that 70 percent of *However, not all HMOs are required to have open enrollment periods. Only those organizations that either have provided comprehensive health services on a prepaid basis for at least five years or have an enrollment of at least 50,000 members, and which did not have a financial deficit in the preceding fiscal year, are required to have an open enrollment period. Furthermore, there are limitations on the duration of the open enrollment period, and the open enrollment requirements may be waived if an HMO demonstrates that compliance would jeopardize its existence.78

132 the patients in skilled nursing facilities needing physical therapy and 90 percent of those needing occupational and speech therapy did not receive them.^9 The handicapped or disabled person seeking nursing home care may be refused admission because of their needs for care. It is widely recognized that persons who require, or who are assumed will require, "heavy care" are screened out by nursing homes. Such individuals could include blind or deaf persons, those with colostomies, ileostomies, or catheters, as well as those with drug or alcohol problems—in other words, various types of patients who fall within the Section 504 definition of handicapped. Only scattered documentation is available, however, regarding the extent to which this occurs. The possibility of exclusion of such individuals increases if they are Medicaid recipients. Most nursing homes have long waiting lists and can decide which public and private patients to admit, as well as what rates to charge the private patients. As was described in Chapter 3, state Medicaid payments to nursing homes are often much lower than rates paid by private patients. Because of this disparity, as a recent General Accounting Office report notes, "nursing homes generally prefer to accept private pay applicants over Medicaid applicants and the less disabled over the highly impaired, difficult to care for patient."80 The New York State Moreland Act Commission investigation into nursing homes observed that many facilities "make it a policy to accept only relatively well patients.81 Several homes employ 'headhunters' whose task it is not only to find patients to fill beds, but also, and importantly, to screen out difficult cases." It is thus difficult for Medicaid-supported and highly impaired applicants (which in many instances may be identical populations) to find a vacant nursing home bed. This situation is exacerbated in areas where there is a bed shortage. The use of "heavy-care" criterion by nursing homes to screen out the disabled has yet to be thoroughly examined, but a number of issues bear scrutiny. The heavy-care criterion is apparently applied on an informal basis by nursing homes and is nowhere fully defined.82 Heavy-care could refer to needs for extensive medical care or personal assistance, or both. It could refer to patients whose personalities or behavior make them more difficult to cope with by staff or other residents. Do all patients classified as heavy-care actually require such care? Are certain conditions routinely assumed to require more care, despite the fact that conditions and functional levels differ among patients? The economic rationale for screening these patients raises other questions. Are such patients merely less profitable than others, or will the facility actually lose money because the reimbursement rate is inadequate to support the necessary care for these persons? Whether the source of discrimination is seen to lie in federal/state reimbursement policies or in the practices of facilities, a fairer distribution among nursing homes of heavy-care patients and/or Medicaid recipients appears necessary to ensure that handicapped persons needing nursing home care are more readily admitted. If they

133 are in hospitals waiting to be admitted to nursing homes, they nay be there for long periods of time, receiving more care than necessary and at considerable public expense;8^ if they are at home, without sufficient care, their condition may be adversely affected.84 In contrast to the situation in which handicapped persons are denied admission to nursing homes, many others, particularly the marginally disabled, are being inappropriately placed in such institutions. The nursing home often is used as a housing alternative because of insufficient economic or social resources in the community.^^ The lack of proper facilities is reinforced by the bias toward institutionalization under Medicaid. Although skilled nursing facility care and home health services are mandatory under Medicaid, the states can limit the amount and types of services provided, as well as the reimbursement rates. Most have restricted home health services.8^ On the other hand, despite complaints regarding low reimbursement rates under Medicaid, nursing home participation in Medicaid is quite extensive. The result may not only be more costly in financial terms for society as a whole, but deleterious for the patient. Too often, marginally disabled persons are relegated to nursing homes where little effort is made to meet their personal, social, or rehabilitative needs, thereby reducing their ability and desire to function at their full potential. CONCLUSIONS The committee's review of the health care of handicapped persons leaves little doubt that a variety of problems exist, although it is difficult to know the extent to which discrimination in a strict sense is involved. A full statement of the extent and sources of these problems is prevented by the lack of a clear operational definition (or set of definitions) of a "handicapped person" for the purpose of the law and by lack of adequate information about the health status and health care of handicapped persons, whatever definitions may be used. The committee concluded that present informational inadequacies are partially rooted in priorities and apathy about the condition of handicapped people and partially in conceptual and methodological difficulties. The former problem is symbolized by the failure to collect any information about handicaps in the 1980 census, a matter that should be corrected in 1990, and by the lack of a clear locus of responsibility for assuring that opportunities are taken to collect relevant information. The OCR, because of its responsibilities under Section 504, may be able to play a useful role as a catalyst for bringing about needed improvements in information by working with statistical agencies within the Department of Health and Human Services to increase attention to the topic. Conceptually, the most fundamental problem is the lack of clear and consistent definitions for use in compiling information about handicapped beneficiaries in federal programs and in collecting information by surveys. Ideally, such a definition should be as

134 consistent as is feasible with the central elements of the Section 504 definition of a handicap: an impairment that significantly limits a person in a major life activity (not just in terms of work disability) . (It should also be made clear that temporary impairments or acute conditions are not included.) The need to develop a clear and consistent definition for statistical purposes should be given serious attention, perhaps through the National Committee on Vital and Health Statistics that advises the Secretary of DHHS. At the same time, more explicit attention should be given to collecting information about the problems experienced by handicapped persons in obtaining health care under available definitions. 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 data-collection efforts. Finally, more information is needed about systematic factors that influence the care that handicapped persons receive. This includes state variations in federally funded programs on which many handicapped persons are dependent and information about planning agencies' activities pertaining to the health care problems of handicapped persons. The committee has noted that the Section 504 definition itself causes problems for both data collection and enforcement both because of its breadth and vagueness and because of its inclusion of disabilities, chronic (and perhaps acute) diseases, mental disorders, and drug and alcohol abusers. It is unlikely that the health care problems of the chronically ill, for example, will be in any way mitigated by being redefined as problems of handicapped persons. The Section 504 definition leads to a confusion of various issues and makes both research and meaningful enforcement activities (including the definition of discrimination) unnecessarily difficult. The legislative definition bears reconsideration. As far as the OCR is concerned, the committee suggests that it (1) review definitions of handicapping conditions under existing federal programs, (2) develop a set of functional definitions of handicapping conditions under the existing language of Section 504, and (3) develop, with other relevant bureaus and agencies within DHHS, common definitions for data collection, to be included in on-going statistical surveys. REFERENCES 1. The Rehabilitation Act of 1973, §504, 29 U.S.C. $794 (1976)

135 2. The Rehabilitation Act Amendments of 1974, SHI, 29 U.S.C. 706(6)(1976). 3. 42 Federal Register 22685 (May 4, 1977). 4. Frank Bowe, Handicapping America: Barriers to Disabled People (New York: Harper and Row, 1978) p. 155. 5. 42 Federal Register 22678 (May 4, 1977). 6. Bowe; Lawrence Haber, Identifying the Disabled: Concepts and Methods in the Measurement of Disability, Report No. 1, Social Security Survey of the Disabled, 1966 (Washington, D.C.: DREW, 1967); Saad Z. Nagi, Disability and Rehabilitation (Columbus, OH: Ohio State University Press, 1969); The Urban Institute, Report of the Comprehensive Service Needs Study (Washington, D.C.: The Urban Institute, 1975). 7. U.S. Department of Health, Education, and Welfare, "Proposals to Reduce the Inconsistencies in Concepts, Criteria, and Definitions of Disability and Handicap," decision memorandum to the Secretary from the Assistant Secretary for Planning and Evaluation (April 7, 1978). 8. The Urban Institute, p. 32; Monroe Berkowitz, "Public Policy Towards Disability—the Numbers, the Programs and Some Economic Problems," in Science and Technology in the Service of the Physically Handicapped, Volume II, Supporting Papers, National Academy of Sciences (Washington, D.C. National Research Council, 1976) p. 37. 9. Rehab Group, Inc., Digest of Data on Persons with Handicaps and Disabilities (Falls Church, VA: Rehab Group, Inc., 1979) p. 1. 10. Social Security Administration, Work Disability in the United States: A Chartbook (Washington, D.C.: Government Printing Office, 1977). 11. President's Commission on Mental Health, "The Burden of Mental Disorders," in Task Panel Reports, Volume II, Appendix (Washington, D.C.: Government Printing Office, 1978) pp. 13-17. 12. The Ad Hoc Committee on the Chronic Mental Patient, "Problems, Solutions, and Recommendations for a Public Policy," in John A. Talbott (ed.), The Chronic Mental Patient (Washington, D.C.: American Psychiatric Association, 1978) pp. 13-15. 13. National Center for Health Statistics, The National Nursing Home Service: 1977 Summary for the United States, Vital and Health Statistics, Series 13, No. 43 (Washington, D.C.: Government Printing Office, 1979) p. 31. 14. The Ad Hoc Committee on the Chronic Mental Patients, p. 14; Thomas R. Vischi et al., The Alcohol, Drug Abuse, and Mental Health National Data Book, DHEW Publication No. (AOM)80-938, (Washington, D.C.: Government Printing Office, 1980) pp. 15-19. 15. The President's Commission on Mental Health, p. 16. 16. President's Committee on Mental Retardation, "A Renewed National Commitment" in Task Panel Reports, Report of the Liaison Task Panel on Mental Retardation, Volume IV, Appendix (Washington, D.C.: Government Printing Office, 1978) p. 2022. 17. Robert Wood Johnson Foundation, Special Report: Dental Care for Handicapped Americans (Princeton, NJ: Robert Wood Johnson Foundation, 1979) pp. 4 and 6.

136 18. James H. Murphy, Jr. (United Cerebral Palsy Association, Washington, D.C.), personal communication, February 5, 1980; 42 Federal Register 22,686 (May 4, 1977). 19. David Sudnow, Passing On: The Social Organization of Dying (Englewood Cliffs, NJ: Prentice-Hall, 1967) pp. 100-105; Glenn Affleck, "Physicians' Attitudes Toward Discretionary Medical Treatment of Down's Syndrome Infants," Mental Retardation 18 (April 1980) pp. 79-81. 20. Herbert Cohen, "Obstacles to Developing Community Services for the Mentally Retarded" in M. J. Begab and S. A. Richardson (eds.), The Mentally Retarded and Society: A Social Science Perspective, (Baltimore, MD: University Press, 1975) p. 410. 21. Donald Elisburg and Bonnie Friedman, "A Minority Whose Time Has Come," Human Rights 9 (Spring 1980) p. 30-33, 53-54. 22. Hal Kirshbaum (Center for Independent Living, Berkeley, California), personal communication, January 22, 1980; Gregg Downey, "The Disabled Fight for Their Own Cause," Modern Health Care (February 1975) pp. 22 and 24; Joan Rogers and Joanne Ligone, "Psycho-social Parameters in Treating the Person with Quadriplegia," American Journal of Occupational Therapy 33 (July 1979) p. 436. 23. Mark Ozer (Mainstream, Inc., Washington, D.C.), personal communication, April 4, 1980; Downey, pp. 22-23. 24. Ozer. 25. White House Conference on Handicapped Individuals, Final Report, Volume Two: Part A (Washington, D.C.: Government Printing Office, 1977) pp. 29-30; President's Committee on Employment of the Handicapped, National Health Care Policies for the Handicapped (Washington, D.C.: The White House, 1978) p. 41; Downey, p. 23; Albert Pimentel, (National Association of the Deaf, Silver Spring, Maryland), personal communication, January 9, 1980; Irene Leigh, "The Impact of a Hearing Loss on Health Care of the Infant or Preschool Child," Volta Review 77 (January 1975) p. 51. 26. Doris Stiefel, "Inclusion of a Program of Instruction in the Care of the Disabled in a Dental School Curriculum" Journal of Dental Education 43 (1979) p. 262; and Robert E. Roberts et al., "Dental Care for Handicapped Children Reexamined: I. Dental Training and Treatment of the Handicapped," Journal of Public Health Dentistry 38 (Winter 1978) p. 25. 27. Robert Wood Johnson Foundation; Stiefel; Steven Randell and Lawrence Cohen, "Dental Service Established With Minimum Effort" Hospitals 54 (January 1980) pp. 105-107. 28. President's Commission on Mental Health, "Report of the Special Populations Subpanel Mental Health of Physically Handicapped Americans," in Volume III, Appendix (Washington, D.C.: Government Printing Office, 1978) pp. 1003-1004. 29. U.S. Department of Health, Education, and Welfare, Health United States 1979, DHEW Publication No. (PHS) 80-1232 (Washington, D.C.: Government Printing Office, 1980) p. 259. 30. President's Committee on Employment of the Handicapped, p. ix. 31. White House Conference on Handicapped Individuals, p. 30.

137 32. U.S. Department of Health, Education, and Welfare, Minimum Requirements of Construction and Equipment for Hospitals and Medical Facilities, DHEW Publication No. (HRA) 79-14500 (Washington, D.C.: Government Printing Office, 1979) pp. 1-2. 33. 42 Federal Register 22,681 (May 4, 1977). 34. Jacob J. Feldman (National Center for Health Statistics), Unpublished data from 1977 Health Interview Survey presented to IOM Committee, February 8, 1980. 35. Ibid. 36. U.S. Department of Health, Education, and Welfare, A Summary of Selected Legislation Relating to the Handicapped 1977-78, DHEW Publication No. (OHDS) 79-22003 (Washington, D.C.: Government Printing Office, May 1979) p. 6. 37. Commerce Clearing House, Medicare and Medicaid Guide (Chicago, IL, 1977). 38. Sara Rosenbaum (Children's Defense Fund, Washington, D.C.), Testimony before IOM Committee, Washington, D.C., June 6, 1980. 39. Janet Brown and Martha Redden, A Research Agenda on Science and Technology for the Handicapped (Washington, D.C.: American Association for the Advancement of Science, 1979) p. 28. 40. Russell Love, "Breaking the Sound Barrier" Human Rights 9 (Spring 1980) p. 28. 41. Brown and Redden, pp. 28-29. 42. Michael Marge, "U.S. Service Delivery System for the Hearing Impaired," in L. J. Bradford and W. Hardy (eds.), Hearing and Hearing Impairment (New York: Grune and Stratton, 1979) p. 576. 43. Hal Schwartz (National Association of the Deaf, Silver Spring, Maryland), personal communication, February 21, 1980. 44. Charles D. Goldman, "Open Door Policy" Human Rights 9 (Spring 1980) p. 14. 45. L. Goldberg, "The Law: From Shield to Sword for Deaf People" Human Rights 9 (Spring 1980) p. 51. 46. Jerome Schein and Marcus Delk, "Survey of Health Care for Deaf People" Deaf America (January 1980) pp. 5-6, 27. 47. Jerome Shein and Marcus Delk, The Deaf Population of the United States, (Silver Springs, MD: National Association for the Deaf, 1974) . 48. Shein and Delk, 1980, p. 6. 49. Ibid. 50. National Registry of Interpreters for the Deaf (Silver Spring, Maryland), personal communication, May 16, 1980. 51. Brown and Redden, p. 4. 52. Harry Markowicz, American Sign Language: Fact and Fancy, (Washington, D.C.: Gallaudet College, 1977) p. 7. 53. Feldman. 54. Beverlee A. Myers, "Paying for Health Care: The Unequal Burden," Civil Rights Digest 10 (Fall 1977) p. 14. 55 42 Federal Register 22685 (May 4, 1977) . 56. 42 U.S.C. $223(d) (1976). 57. United States Code Congressional and Administrative News: House Report No. 92-231, December 26, 1972.

138 58. President's Committee on Employment of the Handicapped, p. 4. 59. Ibid., p. 7. 60. Social Security Disability Amendments of 1980, Public Law No. 96-265, $103-104, 94 Stat. 441 (1980). 61. U.S. Department of Health, Education, and Welfare, Medicare Handbook, DREW Publication No. (SSA)-79-10050 (Washington, D.C. : DHEW, 1979) p. 42. 62. President's Commission on Mental Health, Report to the President, Volume I (Washington, D.C.: Government Printing Office, 1978) p. 31. 63. 42 C.F.R. 435 (1979 edition); and Satyon Kachar, "Blind and Disabled Persons Awarded Federally Administered SSI Payments," Social Security Bulletin 42 (June 1979) p. 13. 64. President's Commission on Mental Health, p. 32. 65. Rosenbaum, 1980. 66. Health United States, 1979, p. 128. 67. Marilyn Holle (Western Center for Law and the Handicapped, Los Angeles) Testimony before IOM Committee (Los Angeles, CA, May 9, 1980) . 68. President's Commission on Mental Health, "Report of the Task Panel on Legal and Ethical Issues" in Task Panel Reports Volume III, Appendix (Washington, D.C.: Government Printing Office, 1978) pp. 1406-1409. 69. Garry D. Brewer and James Kakalik, Handicapped Children: Strategies for Improving Services (New York: McGraw-Hill, 1979) p. 258. 70. Ibid., p. 258. 71. Ibid., p. 271. 72. U.S. Department of Health, Education, and Welfare, "Crippled Children's Services" (mimeographed data, 1976). 73. Urban Institute, p. 651. 74. B. Greer et al., "Quasi-legal Barriers to Adjustment to Disability: Accident and Hospitaliztion Insurance," Rehabilitation Literature 36 (August 1975) p. 250. 75. Ibid., pp. 274-248. 76. Cystic Fibrosis Foundation, Cystic Fibrosis: A Plea for the Future Volume II (Atlanta, GA: Cystic Fibrosis Foundation, 1978) p. 6. 77. Hal Freeman, Office for Civil Rights, DHHS, personal communication, June 2, 1980. 78. 742 USC, 51301, (d). 79. U.S. Department of Health, Education, and Welfare, Office of Long Term Care, Long Term Care Facility Improvement Study: Introductory Report DHEW Publication No. (05)76-50021, July 1975. 80. U.S. General Accounting Office, Entering a Nursing Home - Costly Implications for Medicaid and the Elderly (Washington, D.C.: Government Printing Office, 1979) p. 103. 81. New York State Moreland Act Commission on Nursing Homes and Residential Facilities, Long Term Care Regulation: Past Lapses, Future Prospects: A Summary Report. (New York: author, 1976) p. 27.

139 82. Gretchen Schafft (Foundation of the American College of Nursing Home Administrators, inc., Bethesda, MD), Testimony before IOM Committee (Washington, D.C., June 6, 1980). 83. Connecticut Hospital Association, Extended Hospital Stay: A Serious Problem That's Growing Worse, Report No. 2 (CHA: January 6, 1980); Karen Dumbaugh and Robert Mackler, Report on Patients in Massachusetts Hospitals Awaiting Placement into Long Term Care (Massachusetts Hospital Association, 1979); National Capital Medical Foundation, Inappropriate Use of District Hospitals, 1978 (Washingon, D.C.: NCMF, 1978); New York Statewide Professional Standards Review Council, Inc., "Report on a Statewide Survey of Patients Awaiting Placement for Alternative Care Facilities in New York State, June 1979," press release (New York, 1979). 84. T. Willemain, E. Bishop, and A. Plough, "The Nursing Home 'Level of Care' Problem," University Health Policy Consortium (Waltham, MA: Brandeis University, 1980) p. 8. 85. Congressional Budget Office, Long Term Care for The Elderly and Disabled (Washington, D.C.: Government Printing Office, 1977) p. x. 86. U.S. General Accounting Office, p. 19.