8
A Comprehensive Approach to Disability Prevention: Obstacles and Opportunities

Disability prevention is already a stated national goal, enunciated in the numerous federal, state, and local laws and policies that promote independence and equality of opportunity for people with disabling conditions. During the last two decades, Congress has passed more than a dozen laws designed to increase the participation of people with disabling conditions in the day-to-day activities of society (Vachon, 1989-1990). Yet the prevalence of disabling conditions is growing, and with it, annual disability-related expenditures (federal, state, local, and private), which are approaching $200 billion (Chirikos, 1989). Numerous factors underlie these trends, many of which, such as the link between disabling conditions and low socioeconomic status, are poorly understood. Nonetheless, it is reasonable to ask whether the vast resources expended on disability are yielding a sufficient return. The answer must be an unequivocal no.

Similarly, one can ask whether enough resources are devoted to measures to arrest the continuing increase in the economic costs of disabling conditions. Again, the answer is no. From a strictly economic vantage point, the aggregate costs of disabling conditions, measured as the sum of reductions in household income, net of income transfer payments, and purchases of goods and services made necessary by disabling conditions, totaled an estimated $176.7 billion in 1980. Between 1960 and 1980, according to the analysis that yielded this estimate, annual economic losses attributable to disabling conditions increased at an average rate of 2.7 percent (Chirikos, 1989). These estimates, although necessarily rough because of the inadequacies of data available on the population with disabling conditions, indicate the magnitude of savings that can be achieved with more comprehensive approaches to primary, secondary, and tertiary prevention.

Among national goals, disability prevention is akin to an orphan whose



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Disability in America: Toward a National Agenda for Prevention 8 A Comprehensive Approach to Disability Prevention: Obstacles and Opportunities Disability prevention is already a stated national goal, enunciated in the numerous federal, state, and local laws and policies that promote independence and equality of opportunity for people with disabling conditions. During the last two decades, Congress has passed more than a dozen laws designed to increase the participation of people with disabling conditions in the day-to-day activities of society (Vachon, 1989-1990). Yet the prevalence of disabling conditions is growing, and with it, annual disability-related expenditures (federal, state, local, and private), which are approaching $200 billion (Chirikos, 1989). Numerous factors underlie these trends, many of which, such as the link between disabling conditions and low socioeconomic status, are poorly understood. Nonetheless, it is reasonable to ask whether the vast resources expended on disability are yielding a sufficient return. The answer must be an unequivocal no. Similarly, one can ask whether enough resources are devoted to measures to arrest the continuing increase in the economic costs of disabling conditions. Again, the answer is no. From a strictly economic vantage point, the aggregate costs of disabling conditions, measured as the sum of reductions in household income, net of income transfer payments, and purchases of goods and services made necessary by disabling conditions, totaled an estimated $176.7 billion in 1980. Between 1960 and 1980, according to the analysis that yielded this estimate, annual economic losses attributable to disabling conditions increased at an average rate of 2.7 percent (Chirikos, 1989). These estimates, although necessarily rough because of the inadequacies of data available on the population with disabling conditions, indicate the magnitude of savings that can be achieved with more comprehensive approaches to primary, secondary, and tertiary prevention. Among national goals, disability prevention is akin to an orphan whose

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Disability in America: Toward a National Agenda for Prevention care has been entrusted to many well-intentioned guardians. Neglect is not so much the issue as the potential for inconsistency, lack of continuity, and, to some degree, shortsightedness. Without coherence and coordination in the planning and provision of services, progress against this societal and public health problem will be impeded. In its 1986 report Toward Independence, the National Council on the Handicapped (now the National Council on Disability) criticized the "complexities, inconsistencies, and fragmentation in the various federal laws that affect Americans with disabilities." In public hearings convened by the council, people with disabling conditions stated that "many programs do not mesh well with other available services, and that too often the service delivery system exhibits gaps, inconsistencies, and inequities" (National Council on the Handicapped, 1986). These failings are not surprising, given the magnitude of the disability problem and the numerous public and private programs that have evolved to address it. At the federal level, about 50 programs spread across five cabinet-level departments offer services beneficial to people with disabling conditions. Coordination is not easily achieved in such a far-flung bureaucracy, and this difficulty is compounded by the formidable challenge of developing effective linkages among federal, state, and local agencies and between the public and private sectors. Failure to improve the fragmented collection of programs is a virtual guarantee that the large social and economic costs associated with disability will continue to grow. Disability prevention requires an effective system of longitudinal care, an integrated service delivery network that is responsive to the health, social, housing, and personal care needs of people who have disabling conditions or who have a high risk of developing them. Many of the elements of the desired network are already in place but now operate in isolation rather than as complementary parts of an integrated whole. Achieving an integrated service delivery network that is easily negotiated by client populations will be difficult. As noted in earlier chapters, the lack of an adequate epidemiologic surveillance system for tracking the incidence and prevalence of disabling conditions in sufficient detail hampers planning, including identification of service delivery priorities. The inadequacy of current surveillance efforts is but one of many impediments that limit the overall effectiveness of the hundreds of public and private programs related to disability. Rather than evaluate these individual programs, the committee describes some of the obstacles and opportunities that exist vis-à-vis an integrated national system of disability prevention. Many of the issues are not new, and some, such as inadequate access to health care for certain high-risk populations, are subsets of broader social concerns. Progress toward a comprehensive approach to disability prevention requires reckoning with the problems outlined below and capitalizing on opportunities.

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Disability in America: Toward a National Agenda for Prevention DEMEDICALIZATION The so-called medical model has influenced the development of most of the nation's disability-related programs. The model defines disabling conditions as principally the product of physical and mental impairments that constrain performance. Influenced by this view, health and social agencies provide a mix of services that, for the most part, categorize affected individuals as permanently ill and incapable of meeting their own needs. Therefore, the problems that disability-related programs seek to address are often viewed as inherent to the individual and as independent of society. The independent-living and disability-rights movements blame adherence to the medical model for the creation of disability-related programs that foster dependence rather than personal autonomy. Members of these movements correctly argue that disability is the result of a dynamic process involving complex interactions among biological, behavioral, psychological, social, and environmental factors. Some have called for the "demedicalization" of disability in order to reflect the broader role of society. To do so in the extreme sense, however, would allow the pendulum to swing too far in the other direction. An example illustrates the need for a more balanced approach to disability. The 1987 survey commissioned by the International Center for the Disabled (ICD) reported that two-thirds of the unemployed respondents, more than 8 million people, would like to be working (Taylor, 1989). Were the majority of these people not working because their disabling conditions prevented them from doing so, or were they not working because of hiring discrimination, transportation difficulties, or other societal barriers? Doubtless, these and other reasons account for why at least a portion of these respondents do not have jobs, but they probably do not account for the majority. A follow-up survey of U.S. employers, also done for ICD, found that the biggest single obstacle to employment for people with disabling conditions is the lack of qualifications (Taylor, 1989). Thus the survey results indicate that education and training are important elements of efforts to help people with disabling conditions secure jobs. Such training and education programs must be designed with full recognition of the limitations imposed by one's physical or mental condition. Moreover, continued employment will often require medical interventions that help maintain the health of the worker who has a disabling condition. Timely and appropriate medical intervention is an essential element of the committee's recommended approach to disability prevention—an integrated system of longitudinal care. However, the committee agrees with Caplan (1988), who has argued that "health care should not be the major preoccupation of public policy" related to disability. "[T]reating chronic illness and disability strictly as medical problems," Caplan has written, "'disenfranchises'

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Disability in America: Toward a National Agenda for Prevention a large segment of society by making them permanent objects of social beneficence, a status that few if any members of our society would wish to occupy." Disability prevention requires a change in the perspective of physicians and other health care providers to broaden modern medicine's cure-oriented emphasis on acute illness. Often, people with disabling conditions cannot be cured, although this is not to say that they do not require acute care services. For these people, medical interventions are more appropriately viewed as playing an enabling, or empowering, role. The standard of successful treatment should be achieving a level of health and functioning that allows people with disabling conditions to manage their own affairs and to participate in society. When viewed as a complementary element of disability prevention, health care can move in new directions. For example, treatment protocols, as recommended in the previous chapter, would consider not only medical needs but also necessary environmental modifications, the availability of family support, and other nonmedical variables. Thus health care should be viewed as only one component of an array of enabling interventions that have a common aim: whether social, environmental, or medical, the services provided to people with disabling conditions should seek to ensure a reasonable quality of life. Similarly, attention to quality of life may point the way to new intervention strategies and better measures of rehabilitation outcomes. For example, significant recovery of intellectual capacity and motor function in people who have sustained severe brain injuries is generally considered to constitute successful rehabilitation. Yet a growing body of research indicates a high frequency of behavior disorders in this population, a problem rarely addressed in rehabilitation even though it is believed to be a major cause of job loss. A greater emphasis on measures of quality of life in evaluations of the effectiveness of rehabilitation might spawn greater awareness and understanding of the problem. NATIONAL HEALTH PROMOTION AND DISEASE PREVENTION OBJECTIVES The status and importance of public health and preventive medicine were enhanced significantly in 1979, when the Public Health Service promulgated 226 health promotion and disease prevention objectives to accomplish five national health goals by 1990 (U.S. Department of Health and Human Services, 1980a). Measured against 1977 benchmark statistics, these goals were to achieve the following: 35 percent fewer deaths among infants, 20 percent fewer deaths among healthy children between the ages of 1 and 14, 20 percent fewer deaths among adolescents and adults between the ages of 15

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Disability in America: Toward a National Agenda for Prevention and 24, 25 percent fewer deaths among adults between the ages of 25 and 64, and 20 percent fewer sick days among adults age 65 and older. Among the many benefits attributable to this effort are the focusing of attention on important health priorities and the mobilizing of resources to achieve specific aims. A mid-decade review (U.S. Department of Health and Human Services, 1986) reported that the nation was progressing toward achieving about two-thirds of the measurable objectives. (About one-fourth of the objectives cannot be measured.) The goal of disability prevention was only indirectly represented in the 226 health objectives, which were divided among 15 target areas such as control of high blood pressure, immunization, infant health, accident prevention and injury control, nutrition, and physical fitness. This is not to say, however, that accomplishing the objectives would not translate into significant advances against some disabling conditions. A review of the objectives to determine their applicability to disability prevention deemed nearly 80 percent to be relevant to the prevention of primary disabling conditions. An even larger percentage were considered applicable to the prevention of secondary conditions. Nonetheless, the objectives were far from comprehensive, failing to address, for example, hearing and vision disorders, learning disabilities, mental health problems, and concerns related to the health and functioning of the elderly (Nova Research Company, 1988). A common criticism of the health objectives was that they focused almost exclusively on mortality and failed to reflect the importance of reducing morbidity. Indeed, a reduction in mortality, such as traffic-related deaths, may mask an increase in disabilities resulting from injuries sustained in motor vehicle collisions. A related criticism was that the objectives neglected the incidence and prevalence of major chronic diseases and other conditions that can lead to disability. In September 1990, the U.S. Public Health Service promulgated national health objectives for the year 2000 (U.S. Department of Health and Human Services, 1990). Healthy People 2000—the completed volume of the year 2000 health objectives (U.S. Department of Health and Human Services, 1990) embraces disability prevention more fully as a national health priority than did the objectives for the preceding decade. In effect, each priority area has a disability prevention component as a natural corollary. In addition, one priority area focuses specifically on "diabetes and chronic disabling conditions." The priority areas for Healthy People 2000 are listed in Table 8-1. Integration of disability prevention into the health objectives framework should be enhanced further by a three-year project, begun in 1989, to tailor the implementation of the objectives to the special needs of people with disabilities. Funded by the Public Health Service, this project is being carried out by the American Association of University Affiliated Programs. Despite the marked improvements suggested by Healthy People 2000, the

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Disability in America: Toward a National Agenda for Prevention TABLE 8-1 Year 2000 Health Objectives Priority Areas Assigned to Categories of Health Promotion, Health Protection, and Preventive Services Health Promotion Health Protection Preventive Services Physical activity and fitness Unintentional injuries Maternal and infant health Nutrition Occupational injuries Heart disease and stroke Tobacco Environmental health Cancer Alcohol and other drugs Food and drug safety Oral health Other chronic and disabling conditions Family planning   HIV infection Mental health   Sexually transmitted diseases Violent and abusive behavior   Immunization and infectious diseases Educational and community-based programs   Clinical preventive services Note: Each of the 21 priority areas contains objectives in the following age-related categories: healthy babies, healthy children, healthy adolescents and youth, and healthy older people. SOURCE: U.S. Department of Health and Human Services, 1990. importance of secondary and tertiary prevention is not fully acknowledged. Many objectives fail to recognize that mortality is not the only outcome of disease and injury. In fact, many chronic conditions do not ordinarily lead to death, and their impacts are measured more appropriately by indicators of quality of life rather than by mortality. For example, one objective calls for reducing stroke-caused deaths to no more than 20 per 100,000 people. However, disability and other forms of morbidity are more common outcomes of stroke than death. Thus an appropriate, related health objective might be to reduce the rate of disability or activity limitation caused by stroke. The establishment of a distinct set of national goals related to disability was proposed in 1986 in federal rehabilitation legislation, but the proposal did not pass (Vachon, 1989-1990). The goal of disability prevention would be advanced significantly if it were fully incorporated into the nation's health objectives. CLINICAL PREVENTIVE SERVICES An important information resource is the Guide to Clinical Preventive Services (U.S. Department of Health and Human Services, 1989a), a report that details more than 100 effective interventions to prevent 60 different illnesses and conditions. Although mortality is the measure used for evaluating the impact of the interventions, the means of intervention go beyond primary intervention to include regular screening (secondary prevention) and recommendations

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Disability in America: Toward a National Agenda for Prevention for early and persistent treatment (tertiary prevention). The report describes a key role for primary caregivers in screening for many conditions and immunizing for others. It also emphasizes strengthening the clinician's role in counseling patients to change unhealthful behaviors related to diet, smoking, exercise, injury, and sexually transmitted disease. Indeed, this approach should be furthered to encompass the many interventions needed to address the biological, environmental, and lifestyle factors that affect primary and secondary disabilities. FEDERAL PROGRAMS AND POLICIES In 1986 the federal government spent about $60 billion on programs directly benefiting people with disabling conditions. About $57 billion was allocated for income support and medical coverage (National Council on the Handicapped, 1986). The remainder was divided among research and a variety of service-related activities, especially in the areas of education, housing, and transportation. Some programs, such as Social Security Disability Insurance (SSDI)—the largest in terms of expenditures and number of clients—are designed to serve the entire population with disabling conditions, assuming individuals meet eligibility requirements. Others, such as the Department of Education's deaf-blind centers, are tailored to people with specific types of disabling conditions. The department's special education programs offer educational and related services focused on children and youth with disabling conditions, serving about 4.5 million individuals from birth through age 21 (U.S. Department of Education, 1989a). Moreover, several programs, especially those that provide income compensation, are linked to specific occupations or groups of employees, such as railroad workers, coal miners, and longshoremen, or to past military service. The complexities inherent in this bureaucratic compartmentalization are exacerbated by the considerable variety in the way programs are managed and administered. For example, SSDI and Medicare are managed at the federal level, although many administrative responsibilities are delegated to the states. In contrast, the Supplementary Security Income program, Medicaid, and vocational rehabilitation programs are jointly funded but administered at the state level, while municipalities manage most housing and transportation programs. This diffusion of administrative responsibility and direction manifests in fragmentation at the service delivery end. Intended beneficiaries often do not obtain needed services because of confusing, restrictive eligibility requirements, lack of information, separation of complementary services, lack of comprehensive goals, and other reasons. Examples given in the following sections illustrate how the failure to develop consistency among programs undermines progress in efforts to reduce the prevalence of disability.

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Disability in America: Toward a National Agenda for Prevention Social Security Disability Insurance and Rehabilitation The National Council on Disability criticized federal programs for an ''overemphasis on income support and an underemphasis on initiatives for equal opportunity, independence, prevention, and self-sufficiency" (National Council on the Handicapped, 1986). This imbalance and its attendant problems are most apparent in the SSDI program, which made payments totaling $15.9 billion to 3 million working-age people with disabling conditions in 1988 (Social Security Administration, 1989). Originating in a 1956 amendment to the Social Security Act, SSDI payments are intended to compensate people who have a recent work history but are unable to engage in any "substantial gainful activity" because of a medically determined physical or mental impairment that is expected to result in death or persist for at least one year. In practice, SSDI requirements assume that people who establish their eligibility for aid have permanent disabling conditions and have sustained a lifelong loss of income-earning ability. Thus SSDI has been described by some as a retirement pension. The original legislation endorsed the tandem goals of income maintenance and rehabilitation. For example, states were authorized to withhold or reduce cash benefits if a beneficiary refused rehabilitation without good cause. Moreover, the Social Security Administration directed the states to require that every applicant for disability benefits be interviewed by a rehabilitation counselor. This requirement was waived in 1959, however, for applicants who were bedridden, institutionalized, or mentally ill, or who had a worsening impairment (Berkowitz and Fox, 1989). At best, rehabilitation and disability prevention rank as subordinate goals of SSDI, an example of the underemphasis on promoting autonomy. Having satisfied rigid criteria, SSDI beneficiaries then have the option of undergoing rehabilitation, assuming that they meet an additional set of requirements, including a demonstrated potential for work. However, this potential might be viewed as jeopardizing one's eligibility for compensation, serving as a deterrent to rehabilitation. Moreover, even for those desiring rehabilitation, therapy and training are often delayed until completion of the lengthy eligibility-determination process, which can exceed two years if appeals are involved. During this period, a person's condition may deteriorate, and with it, the chances for successful rehabilitation. Other incongruities arise when it is determined that applicants do not meet SSDI requirements and yet are classified as too impaired to satisfy Social Security Administration eligibility standards for rehabilitation services. Rehabilitation is a small component of SSDI and the Social Security Administration's other disability-related programs, and the results have been equivocal. The Beneficiary Rehabilitation Program, begun in 1965, allocated money from the SSDI trust fund to reimburse states in full for rehabilitation

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Disability in America: Toward a National Agenda for Prevention services provided to SSDI recipients who satisfied certain criteria, including predicted length of employment following rehabilitation. A program aim was to save trust fund money by ultimately decreasing the number of SSDI claimants. Early indications of promising performance, which spurred an increase in funding from $40.5 million in 1970 to $102.6 million in 1976, were not confirmed by cost-benefit analyses. The program was discontinued in 1981. Rehabilitation provisions of Social Security Administration disability benefit programs include federal reimbursement to states for vocational rehabilitation services provided to recipients of federal disability benefits. Among other restrictions, this provision applies only if the beneficiary returns to work and remains employed for nine consecutive months (Institute of Medicine, 1987). This provision is little used, as is provision for a trial work period that allows earning without reducing SSDI benefits (though it does affect Supplemental Security Income payments). The bulk of public funding for vocational rehabilitation is allocated through a joint funding arrangement. The federal government, through the Rehabilitation Services Administration of the Department of Education, pays for 80 percent of the services, and the states provide the remaining 20 percent. This partnership spent $1.7 billion on vocational rehabilitation in 1988, funding such services as job training, counseling, and placement; some medical care; the purchase of prosthetic devices; and college education. A recent assessment of the vocational rehabilitation system (Vachon, 1989-1990) notes that, despite the growing work-disabled population and annually increasing outlays, the 220,000 recipients of these services totaled 45 percent fewer than the number served in 1974. Based on a survey conducted for the ICD (Louis Harris and Associates, 1986), Vachon (1987) reports that 10 percent of the working-age population with disabling conditions used the services of the publicly funded program, and half of this group said their participation was of little or no value in securing a job. Vachon notes a high level of dissatisfaction with federal-state programs, noting that, for example, some state workers' compensation agencies have discontinued using program services and have opted to purchase private rehabilitation services. Another criticism is indicative of the controversy surrounding the role of vocational rehabilitation and the conflicting views over the proper client population. Vachon criticizes the "federally mandated 'order of selection,' which requires the most severely disabled to be served first, even though these individuals are the least likely to find jobs." It must be noted, however, that the opposite criticism has been leveled at the rehabilitation efforts of the Social Security Administration; that is, the agency has been accused by some of practicing a form of triage, in which only those most likely to find work are deemed eligible for services. Equally controversial is Vachon's claim that the program focuses too much on people with mental or behavioral disorders, who represent more

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Disability in America: Toward a National Agenda for Prevention than 40 percent of program clientele. "People with such conditions," according to Vachon, "are difficult to treat and represent a small fraction of the work-disabled." His claim of an imbalance is supported by LaPlante's (1989b) analysis of the disability risks of chronic impairments, which found that about 1 million people, or about 3 percent of the population with activity limitations, have a form of mental illness. However, the inference that people with a mental illness are not appropriate targets of public vocational rehabilitation services is likely to foster considerable disagreement. In fact, anecdotal evidence indicates that shrinking labor supplies have increased private-sector interest in employing people with mental impairments. Firms that have reportedly increased hiring of workers who are mentally retarded or who have other disabilities include Marriott, Pizza Hut, McDonald's, United Airlines, and the International Business Machines Corporation (Kilborn, 1989). Disagreement over the targeting of rehabilitation services is emblematic of the ferment in the field, which in turn exacerbates conflicts and contradictions inherent in public programs and their guiding policies. Debate over these issues could be constructive if it leads to a set of complementary goals and a rational set of services. The boundaries of this debate should be expanded to take the experiences of other nations into account. Though international comparisons are limited, the few that have been conducted draw attention to this country's fragmented approach to addressing the financial and rehabilitation needs of people with disabling conditions. A six-country comparison found that only the United States failed to provide a "continuum of care" that creates an "environment conducive to reintegration into the work force" (Beedon and Zeitzer, 1988). In the United States, individuals are often required to prove—before receiving rehabilitative care—that their disabling condition prevents them from working. In the Netherlands, West Germany, Switzerland, Israel, and Austria, rehabilitation usually precedes decisions on permanent disability pensions. The flexibility of programs in these countries permits extension of temporary financial benefits to accommodate continuing rehabilitation aimed at improving or restoring the skills necessary for returning to work. Also notable is the combination of employer incentives and employee benefits that the foreign nations use to foster the return of people with disabling conditions to the work force. Public funds pay for adapting the job site to the workers' needs, whereas in the United States, tax incentives are used to elicit employer cooperation. Some of the foreign nations have instituted measures that address the transportation needs of workers with disabling conditions. Sweden, for example, pays for adapting vehicles for work-related transportation, and West Germany provides an allowance to help pay the cost of traveling to work. The United States should more carefully consider the approaches used in

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Disability in America: Toward a National Agenda for Prevention Western European countries (e.g., the Netherlands, Sweden, England, and France), where disability prevention is viewed from a broad perspective that includes social and ethical implications and socioeconomic costs. Part of the European approach entails the formation of councils and task forces comprising people with disabilities, their families, personal attendants, and advocates, and the elderly. These organizations are then active in negotiating with the governments on issues that affect health care on a national basis. The trend is thus to involve the consumers to an equal degree with health care providers and the payer. An international task force to study social and medical guidelines for the development of services to prevent disability and secondary conditions would be helpful. Access to Medical Care and Preventive Services This nation is deeply embroiled in a complex debate over the adequacy of health care coverage. The hallmarks of the debate are the vast and rapidly increasing sums expended on health care—estimated to total about $600 billion in 1990—and the sizable portion of the population without adequate insurance. Estimates of the number of uninsured Americans range from 22 million to nearly 40 million; millions more are underinsured, facing the risk of significant out-of-pocket expenses when in need of services for which they receive no or partial reimbursement. Although the magnitude of this problem exceeds the scope of the present study, the committee is compelled to elaborate on the consequences of barriers to adequate care for the population with disabling conditions and the population that has a high risk of developing them. Lack of access to health care fuels the prevalence of disabling conditions by limiting the availability of services for the prevention of the impairments that lead to functional limitation and, ultimately, to disability. However, this is only one aspect of the problem, albeit a critical one. People who have private or public insurance often are not covered for the types of services that can halt the progression to disability and the development of equally debilitating secondary complications. Both issues warrant further comment. Insurance Status The few surveys that have investigated at least some aspects of health care coverage for the population with disabling conditions and chronic diseases yield only a cursory assessment. A 1984 National Health Interview Survey estimated that about 11 percent of 22.2 million people who are limited in the performance of their major activity do not have insurance (Table 8-2). The same survey also found that a substantially higher proportion of the population with disabling conditions—nearly 60 percent—were more

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Disability in America: Toward a National Agenda for Prevention each state has one program offering these services. Nonetheless, an estimated 3 million people who require the help of others in performing personal and household tasks are not receiving attendant-care services (World Institute on Disability, 1987a). The Study Group on State Medicaid Strategies estimated that 60 percent to 80 percent of long-term care services are provided by friends, neighbors, and relatives without payment (Meltzer, 1988). Given the strict eligibility requirements under public programs and the high-cost private insurance policies that cover these services, this heavy reliance on family and friends reflects, in part, necessity rather than choice. Although it is not unreasonable to expect family members to contribute to the care of relatives, this option is not available to many people with disabling conditions. Moreover, the additional responsibilities of the caregiver have not received adequate attention. For example, an increasing number of households are providing care for elderly family members. The caregivers usually are middle-aged women, many of whom also have jobs and have primary responsibility for attending to the needs of their own families. A study of 150 Philadelphia families in which married women were providing care for their widowed mothers reported that half of the daughters were working. Half of those who were not working had quit their jobs to care for their mothers, and a quarter of those who were still employed contemplated quitting (Lewin, 1989). As the demands of caring for a chronically ill elderly adult or a relative with a disabling condition increase, the likelihood of institutionalization also increases. Many people who do not receive attendant-care services are likely to end up in nursing homes, incurring costs that may greatly exceed those for care in the home. Federal and state governments pay for much of this bill; public expenditures account for more than 40 percent of nursing home payments. Public expenditures for in-home care are considerably smaller but still substantial, totaling about $2 billion, according to the World Institute on Disability (1987b). On the basis of its national study, the World Institute on Disability concluded that public funds expended for attendant-care services could be used more efficiently, resulting in improved services for a greater number of people in need and at least delaying institutionalization and its higher costs. Recognition of this problem is growing. The Medicare Catastrophic Coverage Act paid for 38 days of home care and 80 hours of respite care for people who assist Medicare recipients in their homes. Strong opposition to the surtax designed to help finance these and other benefits led to the repeal of the act in late 1989, 16 months after its initial passage. Still continuing is a separate demonstration program to evaluate the effectiveness of respite care for people who attend to relatives with disabling conditions. The program is jointly funded by the federal government and participating states. In New Jersey, for example, the program provides up to $2,400 annually for visits by attendants or health care workers (Lewin, 1989).

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Disability in America: Toward a National Agenda for Prevention Related to issues concerning the availability and nature of long-term care are often incongruous insurance policy restrictions on assistive technologies, as discussed in the preceding chapter. Medicare, which has covered SSDI beneficiaries since 1972, pays for certain equipment required by people with disabling conditions, but its criteria for determining what is essential are dictated by an outmoded concept of "medical necessity." In many cases, assistive technologies instrumental to maintaining an independent lifestyle and often essential to preventing secondary conditions do not satisfy the criteria on the Medicare screening list for durable medical equipment. When the importance of, for example, augmentive communication devices or personal hygiene aids is not recognized, dependence is fostered, which can lead to institutionalization. Timing is also an important but often neglected element of effective longitudinal care. Again Medicare, which provides health care coverage for 37 percent of the population with disabling conditions, serves as an example. All SSDI recipients are eligible for Medicare. However, their coverage does not begin until two years after their first SSDI payments, which start five months after acceptance into the program. Because the SSDI approval process can exceed two years, some people may be without health care coverage for more than four years, a significant delay during which further deterioration in health status can occur. Although more studies are needed, a growing body of research indicates that the earlier rehabilitation begins after a patient's condition has stabilized, the better the rehabilitative outcome will be. For some people, the progression to disability and the associated loss of employment may end with the ironic result of obtaining care that, if available earlier, could have prevented the onset of the disability. Researchers from the American Foundation for the Blind evaluated access to care for the estimated 2 million people with low-vision conditions (Kirchner et al., 1985). They studied four categories of care: (1) evaluation, diagnosis, and prescription; (2) therapy and training in the use of vision aids; (3) reimbursement for vision aids; and (4) related rehabilitation services. People with Medicaid were more likely than those with commercial health insurance to be covered for at least some low-vision services. The researchers estimated, however, that about a third of elderly, visually limited persons who are eligible for Medicaid lived in states that did not provide coverage for services in any of the four categories. Only 20 percent of this population lived in states that provided coverage for all categories of care. The results point to a classic contradiction applicable to virtually all disabling conditions. The widespread unavailability of coverage for comprehensive care means that many working-age people are not insured for needed services while they are employed. If they cannot afford to pay for needed services and their conditions deteriorate, they are in jeopardy of losing their jobs. If

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Disability in America: Toward a National Agenda for Prevention they do become unemployed, however, they may be eligible for vocational rehabilitation services that may have averted their job loss. THE NEED FOR COORDINATION A large, multifaceted public health and social issue like disability must be addressed on several fronts. Many public and private programs are now doing so, but largely independent of each other. Some structural reorganization might promote greater coherence and coordination of efforts, but wholesale restructuring of the bureaucracy to create a superagency that embraces all disability-related programs would probably not be a fruitful endeavor. Fragmentation, inconsistency, and redundancy of effort—criticisms now leveled at the current bureaucratic structure—would likely persist. The challenge facing existing programs is to develop working relationships that foster synergy rather than a series of isolated efforts. Integration of efforts within and among the categories of surveillance, research, and services and across governmental boundaries should be one of the primary goals of disability-related programs. This observation is not new, nor is the need unique to disability-related programs. Greater coordination is the grail of most large public and private organizations. The committee considered the possible overlap between the congressionally mandated responsibilities of the federal Interagency Committee on Disability Research (ICDR), which is under the leadership of the National Institute on Disability and Rehabilitation Research, and the role of the recently established Disabilities Prevention Program at the Centers for Disease Control. The primary difference between these two activities is that the ICDR does not focus on prevention. Thus, although tertiary prevention is an integral component of rehabilitation, disability prevention per se has not been a major theme of rehabilitation research, planning, or interagency coordination. The size and complexity of disability issues and the comprehensiveness of the public health approach required to address the compelling national need necessitate a large, well-coordinated program of disability prevention. A summary description of some of the federal programs that focus on rehabilitation research and disability prevention follows. Rehabilitation Research The federal government's lead agency for research on rehabilitation (which corresponds to tertiary prevention) is the National Institute on Disability and Rehabilitation Research (NIDRR), housed in the Department of Education. With a budget of nearly $60 million in 1990, NIDRR supports a broad program of applied and clinical research that has the aim of advancing

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Disability in America: Toward a National Agenda for Prevention procedures, methods, and devices that can improve the lives of people with mentally and physically disabling conditions. An overriding goal of the agency is to foster developments that facilitate integration of people with disabling conditions into independent and semi-independent community life. Approximately one third of NIDRR's budget is allocated for support of 40 research and training centers and 18 rehabilitation engineering centers, most of which are located at universities. Both types of centers have core specialties, and emphasis is on transferring useful research results to the service delivery system. Specialties of the multidisciplinary centers include functional electrical stimulation, musculoskeletal disorders, work-site modifications, deafness and communication disorders, blindness and low vision, mental illness, mental retardation, and developmental problems of newborns with disabilities and neuromuscular disorders. Separate from the centers is the NIDRR-supported network of 13 Model Spinal Cord Injury Care Systems, each providing an integrated set of services to patients with spinal cord injuries. The network includes the National Spinal Cord Injury Statistical Center, which collects and analyzes demographic data and information on methods of patient management, secondary complications, and rehabilitation outcomes. NIDRR also supports demonstration projects intended to address specific rehabilitation needs and to communicate research-generated information to service providers and their clients. The institute supports investigator-initiated research projects; awards small grants for testing new concepts, prototype aids and devices, and training curricula; and funds a small research training program. In addition, NIDRR maintains a national data base for disseminating information on rehabilitation research. As mandated by Congress, NIDRR has primary responsibility for coordinating rehabilitation research among federal agencies. The NIDRR director is the chairman of the Interagency Committee on Disability Research, which is charged with promoting communication and joint research activities among the committee's 27 member agencies. These agencies include categorical institutes of the National Institutes of Health and the Alcohol, Drug Abuse, and Mental Health Administration; the National Science Foundation; units of the departments of Veterans Affairs, Education, and Labor; and the National Aeronautics and Space Administration. Collectively, these agencies carry out a varied program of rehabilitation research. In 1984 the National Institutes of Health tabulated 688 rehabilitation-related research projects, which received total funding of $78 million. Apart from these projects are basic studies that are helping to elucidate the biological underpinnings of impairment and disability. The Department of Veterans Affairs, through its Rehabilitation Research and Development Service, also supports a large rehabilitation research program, allocating approximately $22 million in 1990 to fund more than 175

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Disability in America: Toward a National Agenda for Prevention separate projects at 60 Veterans Administration (VA) medical centers. It also supports three rehabilitation research and development centers and an evaluation unit that assesses new prototype devices and techniques and seeks to promote commercial interest in promising concepts. Priority research areas include prosthetics and amputation, spinal cord injury, and sensory aids. Aging, physical fitness, and psychosocial rehabilitation are other areas of emphasis (U.S. Veterans Administration, 1988). In addition, the VA Rehabilitation Research and Development Service has developed a data base on rehabilitation-related research conducted in the United States and other nations. The service's 1988 tabulation of ongoing research included 384 projects sponsored by 70 public and private organizations (U.S. Veterans Administration, 1988). Disability Prevention The Injury Control and Disabilities Prevention Programs of the CDC's Center for Environmental Health and Injury Control embrace all three supporting elements—surveillance, research, and services—of an integrated system of prevention and longitudinal care. Projects address issues relevant to primary, secondary, and tertiary prevention. Communication of research results is facilitated by the CDC's status as the chief federal agency for prevention, a role in which it has fostered working relationships with state and local governments. Established in 1985 with the aim of reducing the annual toll of 140,000 injury-caused deaths and 70 million nonfatal injuries, the Injury Control Program supports intramural and extramural research in three main areas: prevention, acute care, and rehabilitation. With an annual budget of approximately $24 million, the program supports 35 research projects and seven injury prevention research centers. Some centers carry out broad programs of research, whereas others focus on types of injury, such as motor vehicle collisions and intentional injuries, or the needs of high-risk groups, such as children and the elderly. In addition, program staff members are involved in cooperative research and demonstration projects with several universities and state and county health departments. The staff also provides technical assistance to requesting state and local agencies. At the federal level, the program had primary responsibility for developing the Year 2000 National Health Objectives for reducing the incidence of intentional and unintentional injuries. Responding to a recommendation made by the National Council on the Handicapped in Toward Independence (National Council on the Handicapped, 1986), Congress called for the creation of the Disabilities Prevention Program at the CDC. The program focuses on three areas: developmental disabilities, injuries to the head and spinal cord, and secondary conditions in people with physically disabling conditions. Like the Injury Control Program, the

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Disability in America: Toward a National Agenda for Prevention new initiative aims to help states and localities build their capacity for disability prevention, develop surveillance systems for high-priority disabling conditions, and use the results of epidemiological analyses to identify targets for intervention and guide development of prevention strategies. In 1988 the CDC program initiated cooperative projects in nine states. In five of these states, the aim is to develop plans for disability prevention efforts; in four others, projects will focus on the implementation and evaluation of disability prevention plans. Four university-based projects, begun in 1989, constitute the beginning of an effort to develop data bases on secondary complications. Concentrating on such problems as urinary tract infections and decubitus ulcers in people with spinal cord injuries and late-developing complications in people with poliomyelitis, the epidemiologic studies are expected to yield more detailed understanding of the scope of such problems and to aid identification of cost-effective interventions. The CDC programs are notable for their public health approach to disability prevention. However, complementary programs, which also embody an integration of efforts, are carried out under the aegis of other agencies. For example, the National Institute of Child Health and Human Development (NICHHD) supports a variety of longitudinal, multidisciplinary studies on the biological and behavioral factors involved in normal and abnormal growth and development, from gametogenesis through maturity. Early detection and intervention, as well as restoration of function in children with disabling conditions, are overriding goals of the institute-supported research. Similarly, a major focus of research sponsored by the National Institute on Aging (NIA) is preventing degeneration of physical and mental functions in the elderly. In addition, the need and potential for rehabilitation among the elderly are addressed in NIA's epidemiologic, behavioral, clinical, and basic research programs. In November, 1990, a National Center for Medical Rehabilitation Research was established within the NICHHD. The mandate of the center includes the conduct and support of research and research training, the dissemination of health information, and other programs for rehabilitation of individuals with physical disabilities stemming from diseases or disorders. Public- and Private-Sector Partnerships This committee believes that disability poses one of the greatest challenges currently facing the public health system. Recognizing it as such makes disability prevention a federal, state, and local responsibility. Government involvement at all three levels is a necessary condition for progress, but by themselves, public-sector efforts are not sufficient. Also necessary

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Disability in America: Toward a National Agenda for Prevention is the participation of the private sector and of individuals, who must recognize their personal responsibility for ensuring good health. A recent study by the Institute of Medicine found that, although pockets of excellence exist, the public health system as a whole is deteriorating, a casualty of declining resources and a growing list of health problems (Institute of Medicine, 1988a). Disability prevention, however, can build on the traditional strengths of the public health system, assuming needed investments in capacity are made. In addition, new, more expansive approaches are required to develop the integrated service delivery network that is needed. Housing, transportation, education, employment, medical, nutrition, and other types of services must be easily accessible to target populations. As noted earlier, some services exist, but often within isolated administrative compartments of the bureaucracy, and each category of services often has its own peculiar set of eligibility requirements, typically a composite product of federal, state, and local rule making. Moreover, lack of flexibility is a hallmark, sometimes resulting in services that are not commensurate with needs. Homelessness, for example, can lead to chronic conditions that increase the risk of disability. If adequate medical services are available, the progression to disability may be reversed, and the chances for finding a job and affordable housing increased. Conversely, the health of a person with a chronic condition who cannot obtain needed medical services is likely to deteriorate, and with it the ability to work. The resulting reduced income may not be sufficient to meet rent or mortgage payments. If unable to find affordable housing, this person may end up on the street, exacerbating the health problem and thus decreasing the prospects for finding alternative employment. In this simple example, it is clear that the effectiveness of one set of services is greatly limited by the unavailability of the other. The increasing prevalence of disabling conditions is a national problem that must be addressed at the local level. For its part, the federal government should provide leadership, financial support, and technical resources to states and localities. Although federal budget constraints are real, they do not preclude setting realistic goals for disability prevention, nor should immediate budgetary exigencies obscure the cost savings and increased productivity that will accrue to prevention measures. In addition, states and communities must act on their own, for they too will reap the benefits of disability prevention. The gains attributable to prevention have motivated several states to expand eligibility for prenatal health services. For example, through its new Maternity Outreach and Management Services (MOMS) program, New Jersey intends to make prenatal care available to all pregnant women. Services are free for women with annual incomes of about $18,000 or less (150 percent above the poverty level). For uninsured women with incomes between $18,000 and about $30,000 (250 percent above the poverty level) the state will pay on a sliding-scale

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Disability in America: Toward a National Agenda for Prevention basis. Financed by the state's uncompensated care trust fund, which is supported by a surcharge on private insurance, MOMS provides comprehensive medical and nutrition services, including counseling and home visits, and arranges for the transportation of pregnant women to and from their physicians' offices, as needed. About 7 percent of the babies born to uninsured women in New Jersey are low-birthweight infants. If the new program reduces this rate by one-third, the state estimates that it will save $4 million annually in the form of reduced inpatient care for newborns. In addition, the drop in the number of low-birthweight infants will yield long-term savings because of expected reductions in later-appearing health problems associated with low birthweight (Sullivan, 1989). Demonstration projects are also under way in several agencies of the federal government in addition to those mentioned above. The federal Health Care Financing Administration, for example, supports demonstration projects that are investigating the utility of social health management organizations, which, by including social, transportation, health, and other services under the same administrative umbrella, offer greater flexibility in meeting the multiple needs of clients. In nine cities, the Robert Wood Johnson Foundation and the National Institute of Mental Health are supporting efforts to develop a coordinated set of mental health services that are easily accessible to those in need. Experience shows that good intentions alone do not result in coordination and streamlining of services. For example, the Department of Education's Rehabilitation Services Administration (RSA) and the National Institute of Mental Health (NIMH) signed the 1978 NIMH-RSA Cooperative Agreement calling for the coordination of vocational rehabilitation and mental health services, and 40 states enlisted their participation. Despite this seemingly strong support, the agreement has yielded few perceptible changes in the delivery of services at the local level. Less rigidity in the eligibility criteria of locally operated service delivery programs and greater local discretion in the use of federal and state funds, allowing resources to be transferred across service categories, appear to be needed. The mechanisms for achieving local flexibility and accountability are not readily apparent, however. Thus efforts should be focused on devising and evaluating new approaches to service delivery. Moreover, local efforts would benefit greatly from input and contributions from the private sector and individual members of the community. Clearly, all of the interrelated issues subsumed under the heading of disability prevention, from the need for affordable, widely accessible health care services to shortcomings of worker training and education programs, are of great concern to the private sector. Businesses and other private organizations already support a sizable fraction of rehabilitation research, and a small but growing number of firms have fully embraced the goal of equal employment

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Disability in America: Toward a National Agenda for Prevention opportunity for people with disabling conditions. The challenge is to add to this gradually building momentum by developing mechanisms for effective linkages within and between the public and private sectors. Public and Professional Education It is axiomatic that a public health goal is also a societal goal. Success in preventing disability and reducing its financial and human costs hinges not only on the efforts of professionals and institutions but also on the awareness, attitudes, and actions of the general public. The attitudes and behaviors of the public and those of health care workers, social workers, and other professionals can either facilitate the participation in society of people with disabling conditions or pose formidable obstacles. Thus, public education is an essential element of disability prevention. It is the best means to eliminate stereotypes that translate into the denial of opportunity to people with functional limitations, which may as a result become disabilities. For too long, public understanding of disability has been synonymous with sympathy for individuals with disabling conditions, fostering their dependence and removing them from society's mainstream. Educational efforts should improve understanding of what Caplan calls a ''peculiar Catch-22 situation." People with disabling conditions, he has written, "want to carry out the roles and duties that they are capable of, but they must depend on society's recognition that they cannot and should not be expected to carry out all the usual roles" (Caplan, 1988). This committee cannot prescribe educational methods, an area beyond its expertise. It can, however, identify several appropriate educational themes (as described in Chapter 7): (1) people with disabling conditions constitute a large minority, one-seventh of the U.S. population; (2) most people will develop conditions that increase the risk of disability; (3) disability is not inherent in an individual; (4) like all citizens, people with disabling conditions have a right to participate in society, and their physical or mental conditions do not prevent them from playing productive roles; and (5) people with disabling conditions can achieve a high quality of life. These themes are also pertinent to the education of physicians, other health care workers, social workers, counselors, and other professionals who may provide services to people with disabling conditions. With the exception of medical schools with departments of physical medicine and rehabilitation, however, it is unlikely that the special needs of the large population of people with disabling conditions are addressed in a formal manner, if at all. Many medical schools do not offer courses on disability and rehabilitation. Moreover, pressing personnel shortages limit the capacity of the health care system to provide essential services. Physical medicine and rehabilitation

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Disability in America: Toward a National Agenda for Prevention is one of the few medical specialities with a shortage of physicians (Bowman et al., 1983). Shortages also exist in physical therapy and occupational therapy, as well as in the allied health and nursing professions. Implementation of effective longitudinal care (i.e., over the life course), as described by this committee, requires more than an adequate supply of personnel in key specialities. It also requires the participation of knowledgeable nonspecialists. Typically, health care services for those with disabling conditions are provided by family physicians, general internists, psychiatrists, psychologists, nurses, social workers, and other professionals. Few in these professions receive formal training in how to address the needs of the large client population. In addition, few medical and nonmedical professionals have experience in working collaboratively in multidisciplinary teams. Yet effective care often depends on the coordinated contributions of many such professionals. The Sum of the Parts Viewed collectively, the disability prevention effort addresses many important public health issues. However, the overall effort is lacking, especially with regard to issues related to secondary prevention that halts or slows the disabling process. In addition, mechanisms for coordinating research efforts and ensuring the transfer of results to service providers are inadequate. Moreover, existing disability research activities are largely confined to the medical and biological aspects of disability. Such research is essential, but it must be supplemented by studies that address social and environmental factors that strongly influence the disabling process and the ability of affected individuals to live independently. Few examples exist of crosscutting, interdisciplinary research. In the biomedical area, for example, research is often splintered according to types of diseases or impairments. Given the multitude of conditions that can lead to disability, division of effort is to be expected, but whenever possible, commonalities, such as shared risk factors or vulnerable populations, should be explored and prevention strategies pursued from a multidisciplinary perspective. Quality of life is a unifying theme that could be used to organize disability-related research and to forge ties within and among medical and nonmedical disciplines. Traditionally, biomedical research has focused on reducing mortality. In fact, studies have shown that funding levels for biomedical research agencies correspond strongly to the number of deaths attributable to diseases in their research domain (Mushkin and Dunlop, 1979). The most tangible benefit from this mortality-based emphasis is the steady decline in deaths caused by heart disease. But as noted elsewhere in this report, declining death rates and increasing life spans can have side effects that are masked in mortality statistics, namely, increasing morbidity and low quality of life among survivors.

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Disability in America: Toward a National Agenda for Prevention Increasing emphasis on disease prevention and health promotion attests to growing recognition of the importance of quality of life as a standard for measuring the performance of the nation's health care system and its supporting research enterprise. This standard should be applied more broadly and operationalized in ways that go beyond monitoring the incidence and prevalence of disease, measures that reflect only the effectiveness of primary prevention and acute care. Quality of life can also be gauged in ways that measure how effective secondary and tertiary prevention measures are, for example, in promoting independence among people with disabling conditions or in reducing work absences among the population with disabling conditions. Fully embracing quality of life as a national health standard can bridge artificial boundaries between disciplines and between social and medical services. If averting disease and maintaining functional capacity among people with disabling conditions are shared goals, then once-isolated efforts addressing medical, housing, educational, transportation, and other relevant issues are more easily integrated, increasing prospects for achieving the coordination and synergy now lacking in disability-related programs.