Health Care in a Context of Civil Rights (1981) / Chapter Skim
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HEALTH CARE OF HANDICAPPED PERSONS
HEALTH CARE OF HANDICAPPED PERSONS
Pages 105-139
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From page 105... ...
(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
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From page 106... ...
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)
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From page 107... ...
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.
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From page 108... ...
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)
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From page 109... ...
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.
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From page 110... ...
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.
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From page 111... ...
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)
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From page 112... ...
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)
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From page 113... ...
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.
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From page 114... ...
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)
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From page 115... ...
SOURCE: Vital and Health Statistics, Series 10, Number 112. National Center for Health Statistics.
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From page 116... ...
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.
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From page 117... ...
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?
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From page 118... ...
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.
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From page 119... ...
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?
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From page 120... ...
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.
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From page 121... ...
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.
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From page 122... ...
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?
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From page 123... ...
. Of these 2 million deaf persons, approximately 450,000 are prevocationally deaf (they become deaf prior to 19 years of age)
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From page 124... ...
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.
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From page 125... ...
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)
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From page 126... ...
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)
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From page 127... ...
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.
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From page 128... ...
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)
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From page 129... ...
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.
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From page 130... ...
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)
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From page 131... ...
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.
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From page 132... ...
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)
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From page 133... ...
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.
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From page 134... ...
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.
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From page 135... ...
13. National Center for Health Statistics, The National Nursing Home Service: 1977 Summary for the United States, Vital and Health Statistics, Series 13, No.
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From page 136... ...
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)
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From page 137... ...
Feldman (National Center for Health Statistics) , Unpublished data from 1977 Health Interview Survey presented to IOM Committee, February 8, 1980.
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From page 138... ...
81. New York State Moreland Act Commission on Nursing Homes and Residential Facilities, Long Term Care Regulation: Past Lapses, Future Prospects: A Summary Report.
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From page 139... ...
Bishop, and A Plough, "The Nursing Home 'Level of Care' Problem," University Health Policy Consortium (Waltham, MA: Brandeis University, 1980)
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