9
Recommendations

As described and discussed throughout the report, the social and environmental aspects of disability and disability prevention are of critical importance and help to define limitations in the role of medicine in disability prevention. Indeed, the major disability-related roles for the fields of public health and medicine involve the prevention, early detection, diagnosis, treatment, and rehabilitation of potentially disabling conditions. Once such a condition is identified, however, the means of disability prevention go beyond rehabilitative restoration of function to include important social and economic factors.

Increasing attention to and understanding of the broad range of issues related to disability in this country recently resulted in the Americans with Disabilities Act being signed into law by President Bush on July 26, 1990. That same impetus, amplified by the desire for accessible, affordable quality health care for all, led to the committee's finding that there is an urgent need for a well-organized, coordinated national disability prevention program. An agenda for such a program is presented on the next page. The agenda includes the program's stated goal and five strategies for its achievement: organization and coordination of the national program, surveillance, research, access to care and preventive services, and professional and public education. Recommendations are presented to support each strategy.

ORGANIZATION AND COORDINATION

Organization and coordination of a national disability prevention effort requires action on several levels. There are a number of disability-related programs in the federal government, but currently no one agency has been charged with leadership responsibilities that focus on prevention. The private



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Disability in America: Toward a National Agenda for Prevention 9 Recommendations As described and discussed throughout the report, the social and environmental aspects of disability and disability prevention are of critical importance and help to define limitations in the role of medicine in disability prevention. Indeed, the major disability-related roles for the fields of public health and medicine involve the prevention, early detection, diagnosis, treatment, and rehabilitation of potentially disabling conditions. Once such a condition is identified, however, the means of disability prevention go beyond rehabilitative restoration of function to include important social and economic factors. Increasing attention to and understanding of the broad range of issues related to disability in this country recently resulted in the Americans with Disabilities Act being signed into law by President Bush on July 26, 1990. That same impetus, amplified by the desire for accessible, affordable quality health care for all, led to the committee's finding that there is an urgent need for a well-organized, coordinated national disability prevention program. An agenda for such a program is presented on the next page. The agenda includes the program's stated goal and five strategies for its achievement: organization and coordination of the national program, surveillance, research, access to care and preventive services, and professional and public education. Recommendations are presented to support each strategy. ORGANIZATION AND COORDINATION Organization and coordination of a national disability prevention effort requires action on several levels. There are a number of disability-related programs in the federal government, but currently no one agency has been charged with leadership responsibilities that focus on prevention. The private

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Disability in America: Toward a National Agenda for Prevention A NATIONAL AGENDA FOR THE PREVENTION OF DISABILITY GOAL To reduce the incidence and prevalence of disability in the United States, as well as the personal, social, and economic consequences of disability in order to improve the quality of life for individuals, families, and the population at large. STRATEGIES Organization and Coordination—Establish leadership and administrative responsibility for implementing and coordinating the National Agenda for the Prevention of Disability within a single unit of the federal government. Implementation of the agenda should be guided by a national advisory committee, and progress should be critically evaluated periodically. In addition to federal leadership, achieving the goals of the agenda will require the strong, sustained participation of the state, local, and private sectors. Surveillance—Develop a conceptual framework and standard definitions of disability and related concepts as the basis for a national disability surveillance system. Such a system should be designed to (1) characterize the nature, extent, and consequences of disability and antecedent conditions in the U.S. population; (2) elucidate the causal pathways of specific types of disability; (3) identify promising means of prevention; and (4) monitor the progress of prevention efforts. Research—Develop a comprehensive national research program on disability prevention. The research should emphasize longitudinal studies and should focus on preventive and therapeutic interventions. Special attention should be directed to the causal mechanisms whereby socioeconomic and psychosocial disadvantage lead to disability. Training young scientists for careers in research on disability prevention should become a high priority. Access to Care and Preventive Services—Eliminate the barriers to access to care, especially for women and children, to permit more effective primary prevention and prevent progression of disability and the development of secondary conditions. Existing programs of proven effectiveness should be expanded, and new service programs should be introduced. Returning persons with disabling conditions to productive, remunerative work is a high priority. Professional and Public Education—Educate health professionals in the prevention of disability. Foster a broad public understanding of the importance of eliminating social, attitudinal, and environmental barriers to the participation of people with functional limitations in society and to the fulfillment of their personal goals. Educate health professionals, people with disability, family members, and personal attendants in disability prevention and preventing the development of secondary conditions.

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Disability in America: Toward a National Agenda for Prevention sector must also be involved if such an effort is to be successful. The committee's recommendations below suggest mechanisms to organize and coordinate a national disability prevention program and to provide input from the diverse groups affected by disability. Leadership of the National Disability Prevention Program The congressionally mandated role of the National Council on Disability (NCD) is to provide advice and make recommendations to the President and to Congress with respect to disability policy. In keeping with its charter, the council has been and should continue to be an effective leader in developing disability policy in such areas as education, health care services, and civil rights. In 1986 the NCD identified the need for a national program for disability prevention and recommended to the President and Congress that such a program be established in the Centers for Disease Control (CDC). In 1988 CDC initiated the Disabilities Prevention Program to build capacity in disability prevention at the state and local levels, establish systems of surveillance for disabilities, use epidemiological approaches to identify risks and target interventions, and provide states with technical assistance. It is the only federal program that has been charged specifically with disability prevention. Its initial focus has been prevention of the more readily identifiable injuries, developmental disabilities, and secondary conditions. The committee endorses the emerging federal leadership in disability prevention at CDC. The agency's traditional strengths—epidemiology, surveillance, technology transfer, disease prevention, and communication and coordination with state, local, and community-based public health activities—are consonant with the needs of a national program. Moreover, CDC has demonstrated its leadership in the development and effective implementation of interventions in numerous specific public health situations, in quality control for screening programs and their implementation, in the development of school and other public health curricula, and in the evaluation of public health service delivery programs. Given the magnitude of the public health problem disability presents and the large number of various types of disability-related public and private programs, there is a need for expansion and coordination of disability prevention activities. The committee's recommendations, which appear below, have been formulated to address that need and provide a framework for future program development. The CDC Disabilities Prevention Program is a good first step in the development of such a framework. In addition, the informal relationship that currently exists between it and the National Council on Disability appears to be a mutually beneficial one that has strengthened federal disability prevention activity during its infancy. To the extent that

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Disability in America: Toward a National Agenda for Prevention such a relationship remains beneficial to developing a national program for disability prevention, it should continue. RECOMMENDATION 1: Develop leadership of a National Disability Prevention Program at CDC To advance the goal and carry out the strategies of the national agenda, the committee recommends that the CDC Disabilities Prevention Program be expanded to serve as the focus of a National Disability Prevention Program (NDPP). In assuming the lead responsibility for implementing the national agenda for the prevention of disability over the life course, the NDPP should coordinate activities with other relevant agencies, emphasizing comprehensive surveillance, applied research, professional and public education, and preventive intervention with balanced attention to developmental disabilities, injuries, chronic diseases, and secondary conditions. As the national program develops, with its emphasis on prevention of disability throughout the life course, it should focus on identifying and modifying the biological, behavioral, and environmental (physical and social) risk factors associated with potentially disabling conditions, as well as monitoring the incidence and prevalence of the conditions themselves. The program should be conducted in cooperation and in partnership with state health agencies and other public agencies. A major component of the program should be the development at the state level of a sharply increased capacity to prevent disability. A disability prevention program of the scope and ambition envisioned by the committee will require much more than can be accomplished by governments acting alone. The active participation of all segments of society is required. RECOMMENDATION 2: Develop an enhanced role for the private sector The NDPP should recognize the key role of the private sector in disability prevention, including advocacy groups, persons with disabilities, business and other employers, the insurance industry, academia, the media, voluntary agencies, and philanthropies. Indeed, the potential contributions of the private sector in achieving the program's goals cannot be emphasized too strongly. Its role encompasses the provision of employment opportunities, modification of the workplace, research in and development of assistive technology, provision of appropriate insurance, and development of a national awareness program. One way to involve the private sector might be to establish an independent forum on disability policy for the promotion, coordination, and resolution of disability-related issues that would facilitate prevention. Addressing many of these issues requires the collaborative support and involvement of

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Disability in America: Toward a National Agenda for Prevention a broad array of scientists and informed leaders from both the private and public sectors. The purpose of the forum would be to improve policymaking through a continuing dialogue among individuals and groups that play a significant role in shaping policy and public opinion. Areas for consideration might include access to assistive technology and personal assistance services, gaps in health insurance coverage, family leave policies, and implementation issues related to the Americans with Disabilities Act. Advisory Committee As stated throughout the report, disability is a public health and social issue. Thus a national disability prevention program will be centrally dependent on public attitudes toward people with disabilities and on the way community activities are organized, which includes access to housing, public transportation, and the workplace. Equally important is the reduction of prejudice and discrimination toward people with disabilities. An agenda for disability prevention will require cooperation among all levels of government; the health, social services, and research professions; business; educational institutions; churches; and citizens' organizations throughout the country. RECOMMENDATION 3: Establish a national advisory committee An advisory committee for the NDPP should be established to help ensure that its efforts are broadly representative of the diverse interests in the field. The advisory group should include persons with disabilities and their advocates; public health, medical, social service, and research professionals; and representatives of business, insurance, educational, and philanthropic organizations, including churches. The role of the advisory committee would be to advise CDC on priorities in disability prevention research and the nationwide implementation of prevention strategies, as well as to assess progress toward the goal of the national agenda for the prevention of disability. The advisory committee should be appointed by the Department of Health and Human Services and meet at least three times a year. In keeping with its role in regard to disability policy, the National Council on Disability should be a permanent member of this committee. Interagency Coordination and Periodic Review The fragmentation of disability-related activities and the lack of continuity of care are highly disruptive to preventive efforts. Part of the problem derives from the fact that essential services are funded and provided by various agencies and by different levels of government without a clear focus of authority and responsibility, leading to gaps in services. The lack of

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Disability in America: Toward a National Agenda for Prevention coordination of health and medically related rehabilitation activities and social services is a long-standing problem that is not easily rectified. Improvements will require energy and direction, a focus on prevention, and a clear strategy for coordination, cooperation, and integration among several federal programs as they are administered at the local level. These federal programs include those concerned with health care (Health Care Financing Administration), disability benefits (Social Security Administration and the Department of Veterans Affairs), vocational rehabilitation (Department of Education), community support (National Institute of Mental Health), and housing (Department of Housing and Urban Development). Thus responsibility for planning, coordination, and evaluation of these activities should be highly placed in the federal government (e.g., in the Office of the Secretary of the Department of Health and Human Services) to facilitate the type of coordinated leadership at the federal level necessary to ensure cooperation at the local level. RECOMMENDATION 4: Establish a federal interagency council A standing Interagency Council on Disability Prevention should be established by the Secretary of Health and Human Services. The interagency council should be charged with examining and developing conjoint activities in disability prevention and with identifying existing policies that inhibit disability prevention and rehabilitation. More specifically, the interagency council should be convened semiannually to identify, examine, and foster enhanced disability prevention strategies by (1) recommending the elimination of conflicting public policies and coordinating and integrating programs, (2) developing new policy initiatives, (3) improving service delivery, and (4) setting research priorities. The interagency council should have a permanent staff and issue public reports to the Secretary of Health and Human Services, Congress, and the National Council on Disability. The members of the interagency council should be high-level administrators drawn from the major agencies involved in the various aspects of disability, which include the following: Centers for Disease Control; Health Care Financing Administration; Alcohol, Drug Abuse, and Mental Health Administration; National Institute on Disability and Rehabilitation Research; Health Resources and Services Administration (HRSA), including the Maternal and Child Health Bureau; Agency for Health Care Policy and Research; Social Security Administration; National Institutes of Health; Consumer Product Safety Commission; Bureau of the Census; and other agencies within the Departments of Health and Human Services, Housing and Urban Development, Education, Transportation, Labor, Defense, Veterans Affairs, and others as appropriate.

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Disability in America: Toward a National Agenda for Prevention RECOMMENDATION 5: Critically assess progress periodically There should be periodic, independent review of national disability prevention objectives and progress toward their achievement with a biennial report prepared by the interagency council and presented to the Secretary of Health and Human Services, Congress, and the National Council on Disability. SURVEILLANCE Although information on the incidence and prevalence of disability is available, it is organized in so many different ways that accurate, useful analysis is impeded. Estimates of the prevalence of disability vary by more than 100 percent. One difficulty is the conceptual confusion surrounding disability and its antecedent conditions. Until there is a consistently applied, widely accepted definition of disability and related concepts, the focus for preventive action and rehabilitation will remain uncertain. Conceptual Framework Conceptual confusion regarding disability is not limited to the United States, as indicated by the World Health Organization's development of the International Classification of Impairments, Disabilities, and Handicaps. The WHO classification scheme, which seeks to establish uniformity in the use of important concepts, is an important step toward international comparative studies of disability. The committee, however, saw a need to develop its own system and in this report presents a conceptual framework and model derived from the works of Nagi and the WHO that differs from both primarily in that it incorporates risk factors and quality of life. What is needed now is international agreement on a logical, conceptual system that would result in comparable disability statistics across nations. Existing frameworks represent only the initial steps in a process of conceptual refinement and evaluation. RECOMMENDATION 6: Develop a conceptual framework and standard measures of disability The CDC, which is responsible for surveillance of the nation's health, should design and implement a process for the development and review of conceptual frameworks, classifications, and measures of disability with respect to their utility for surveillance. This effort should involve components of the private sector that collect disability data, as well as federal agencies including the National Institutes of Health; Alcohol, Drug Abuse, and Mental Health Administration; National Council on Disability; Office of Human Development Services (a component of the Department of Health and Human Services); Agency for Health

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Disability in America: Toward a National Agenda for Prevention Care Policy and Research; Health Care Financing Administration; Bureau of the Census; Department of Veterans Affairs; Social Security Administration; and HRSA's Maternal and Child Health Bureau. The objective should be consensus on definitions, measures, and a classification and coding system of disability and related concepts. These elements should then be adopted by all local, state, federal, and private agencies that gather data and assemble statistics on disability. Collaboration with the WHO and other international agencies should be encouraged in developing a classification system to obtain comparable disability data across nations. A National Disability Surveillance System Despite its significance as a public health and social issue, disability has received little attention from epidemiologists and statisticians; consequently, surveillance of disabling conditions is inadequate in many ways. When disability is a focus of attention, surveillance is more often concerned with counting the number of people affected than with investigating its causes and secondary conditions. Without knowledge of the conditions and circumstances that can lead to disability, the problem in its many manifestations cannot be fully understood, nor can effective prevention strategies be systematically developed. Disability prevention will require expanded epidemiological studies and surveillance to identify risk factors, the magnitude of risk, and the degree to which risk can be controlled. Because disability is the product of a complex interaction among behavioral, biological, and environmental (social and physical) factors, epidemiological investigations must encompass a broad range of variables that influence the outcomes of mental and physical impairment. Current surveillance systems are condition specific, permitting identification, for example, of the risk factors associated with injuries. None of them, however, track the risk factors associated with the progression from pathology to impairment to functional limitation to disability. Nor is there sufficient research on the range of consequences associated with specific behaviors and circumstances. Congenital and developmental conditions, injuries, and chronic diseases that limit human activity do not occur randomly within the general population. Epidemiological principles can be used to identify high-risk groups, to study the etiology, or causal pathways, of functional limitations and disabilities, and to evaluate preventive interventions. More specifically, epidemiology and surveillance could play an increased role in the prevention of disability by (1) accurately determining the dimensions of the populations of people with disabilities, (2) identifying the causes of disabilities, (3) guiding the development and selection of preventive interventions, and (4) evaluating the implementation of interventions.

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Disability in America: Toward a National Agenda for Prevention RECOMMENDATION 7: Develop a national disability surveillance system A national disability surveillance system should be developed to monitor over the life course the incidence and prevalence of (1) functional limitations and disabilities; (2) specific developmental disabilities, injuries, and diseases that cause functional limitations and disability; and (3) secondary conditions resulting from the primary disability. The system should also monitor causal phenomena, risk factors, functional status, and quality of life, and provide state-specific data for program planning and evaluation of interventions. This system should be developed in cooperation with a broad range of federal agencies and private organizations and be implemented as part of the National Disability Prevention Program. National Surveys Incidence rates are direct indicators of risk and are fundamental in developing causal understanding. They provide a measure of the rate at which a population develops a chronic condition, impairment, functional limitation, or disability, thereby yielding estimates of the probability or risk of these events. Most existing data on disability provide information on prevalence, not incidence. Prevalence rates are influenced by changes in incidence and by the duration of disability. For example, if the incidence of spinal cord injury were to remain constant but the life expectancy of the population and the duration of time with that disabling condition were increased (a function of recovery rate and mortality), then prevalence would increase. When rates for population groups are compared, only incidence data provide a clear picture of how risks differ among populations. Prevalence data, on the other hand, reflect not only these risks but also differences in rates of recovery and mortality. Thus populations with equal risks of developing disability may differ in prevalence because of differences in access to medical and rehabilitative care. Information on incidence is therefore critical to a causal understanding of disability. Data on duration are also useful to gauge rates of recovery and mortality. What causes disability and what determines its course can be understood only when incidence and duration are known. Similarly, data are required on the incidence and duration of pathology, impairment, and functional limitation. The United States has never had a comprehensive survey that addresses disability specifically. (Canada and Great Britain both recently conducted disability surveys.) The National Health Interview Survey (NHIS) includes some disability-related questions but is limited in scope because it was designed to be a general-purpose survey of the health of the nation and not an efficient investigation of the causes and risks of disability. Such an investigation requires a comprehensive longitudinal survey that addresses

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Disability in America: Toward a National Agenda for Prevention each path of the model displayed in Figure 4 and in particular the biological, behavioral, and environmental determinants of transitions from pathology (or chronic disease) to impairment, functional limitation, and disability. The following recommendations should be especially useful in the evaluation of the implementation of the Americans with Disabilities Act. RECOMMENDATION 8: Revise the National Health Interview Survey The NHIS should be modified to include more items relevant to understanding disability. Core questions on mental disorders and other disabling conditions should be added to the survey to estimate the magnitude of these conditions in the general population and the extent to which they contribute to disability. RECOMMENDATION 9: Conduct a comprehensive longitudinal survey of disability A longitudinal survey is needed to collect data on the incidence and prevalence of functional limitation and disability (for the states and other geographic areas where feasible). The survey should include specific conditions and a variety of measures reflecting the personal and social impacts and the economic burden of disability in the United States. Because of the dynamic nature of disability, consideration should be given to following surveyed individuals over time. The post-1990 Census Disability Survey currently being designed by the Bureau of the Census should include these features. In addition, the disability section of the 1990 census should be evaluated with a view toward developing additional questions for the year 2000 decennial census. Disability Index A disability index comparable to the infant mortality rate and the mortality and morbidity rates for cancer, heart disease, and stroke could serve as an important indicator of societal well-being and help focus the attention of the public and policymakers on this major public health problem. Moreover, such an index would facilitate easy-to-understand assessments of the adequacy of the nation's response to the problem. Many indexes of disability have been proposed, but disagreement in the field over the adequacy and validity of underlying measures has prevented the adoption of widely accepted benchmarks; a major limitation is the inadequacy of the data base for examining alternative measures. As discussed in Chapter 3, an objective analysis is needed that will lead to the development of alternative indexes of disability risk and public health impact. These indexes could be developed and used by the National Disability Prevention Program to help set priorities for prevention efforts among all conditions.

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Disability in America: Toward a National Agenda for Prevention RECOMMENDATION 10: Develop disability indexes A disability index or group of indexes is needed to help establish priorities for disability prevention among conditions and to gauge and monitor the magnitude of disability as a public health issue. These indexes should include measures of independence, productive life expectancy (both paid and unpaid), and quality of life. RESEARCH A wide variety of disability risk factors are associated with the spectrum of diseases and injuries that can lead to disability. These risk factors affect not only the occurrence of the initial event but also the progression of pathologies to impairments, functional limitations, and disabilities. To the extent that risk factors can be eliminated or moderated, the incidence of initial disabling conditions and the progression toward disability can be limited. Much more needs to be known, however, and such knowledge can be acquired only through a broad range of research activities. Coordinated Research Program RECOMMENDATION 11: Develop a comprehensive research program A coordinated, balanced program of research on the prevention of disability associated with developmental disabilities, injury, chronic disease, and secondary conditions should be an essential component of the National Disability Prevention Program. Emphasis should be placed on identifying biological, behavioral, and environmental (physical and social) risk factors over the life course that are associated with disability and secondary conditions and on developing effective intervention strategies. A continuing effort should be made to incorporate functional assessment and quality of life indicators into the research agenda and surveillance measures. Longitudinal Studies The process of developing a disabling condition, as well as the associated potential for secondary conditions, is complex and longitudinal. Yet most available data on disability are cross-sectional, making it impossible to accurately gauge the course of disability in relation to varying risk factors or the impact of timely interventions on the development of disability. There is thus a great need for longitudinal studies that effectively describe the course of disability and identify the most strategic points for effective intervention.

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Disability in America: Toward a National Agenda for Prevention RECOMMENDATION 12: Emphasize longitudinal research A research program of longitudinal studies should be developed to determine the course of conditions and impairments that lead to disability and to identify the strategic points of preventive intervention. The research should emphasize the prevention of secondary conditions, improved functional status, and improved quality of life. In addition, because rapid changes are occurring for people with disabling conditions in terms of health services, public attitudes, and opportunities for social participation, cohort studies are needed to assess the effects of these changes over the life course. Relationship of Socioeconomic Status Deeper understanding of the biological underpinnings of pathologies, impairments, and functional limitations is an obvious need, and this knowledge is being pursued in a variety of biomedical research programs, such as those sponsored by the National Institutes of Health and the Alcohol, Drug Abuse, and Mental Health Administration. Far less effort has been devoted to the influence of behavioral, physical and social environmental, and social factors on the development of disability. One transcendent problem, for example, is the high rate of disability among people of low socioeconomic status. Most studies of disability attempt to control statistically for socioeconomic status because it is a powerful risk factor. Moreover, because socioeconomic status has sometimes been considered to be incidental to research investigations, the relationship between disability and socioeconomic status has rarely been addressed directly. RECOMMENDATION 13: Conduct research on socioeconomic and psychosocial disadvantage Research should be conducted to elucidate the relationship between socioeconomic and psychosocial disadvantage and the disabling process. Research that links the social and biological determinants of disability should result in improved understanding of the complex interactions leading to disability, an understanding that would help in developing new prevention strategies. Interventions There is a clear need to incorporate existing knowledge more efficiently into disability prevention. A concomitant need is to ascertain the effectiveness of current approaches in the wide variety of situations in which disability occurs. All areas of prevention require critical evaluations of the effectiveness of the tools and methods used in the prevention of disability and secondary conditions.

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Disability in America: Toward a National Agenda for Prevention The federal government spends about $60 billion annually for medical coverage and to supplement the incomes of people with disabilities; it spends a relatively small amount on research to identify practices and technologies that can prevent the initial occurrence of disability or limit complications among people with disabilities to help them lead more productive lives. Moreover, the federal funding agencies that support biomedical research have not made prevention a high priority, and there has been little effort devoted to developing research programs on the prevention of disability and secondary conditions. RECOMMENDATION 14: Expand research on preventive and therapeutic interventions Research on the costs, effectiveness, and outcomes of preventive and therapeutic interventions should be expanded. The expanded research program should also include acute care services, rehabilitative and habilitative services and technologies, and longitudinal programs of care and interventions to prevent secondary conditions. The National Institute on Disability and Rehabilitation Research, the Department of Veterans Affairs, the National Institutes of Health, the Alcohol, Drug Abuse, and Mental Health Administration, and the Agency for Health Care Policy and Research should join with CDC to develop cooperative and collaborative research programs in the biological, behavioral, and social sciences as they relate to disability prevention. These programs should also emphasize the translation of new findings into national prevention efforts that inform and educate people with disabilities, their families, personal attendants, and advocates, as well as clinical practitioners. Consideration should be given to approaches used in other 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. Research Training RECOMMENDATION 15: Upgrade training for research on disability prevention CDC, in collaboration with the National Institute on Disability and Rehabilitation Research, should establish an interdisciplinary, university-based research training program (e.g., center grants, cooperative agreements, research training fellowships, career development awards) focused on disability prevention. Such a program should emphasize the epidemiology of disability and research training related to the recommendations and priorities cited in this report. Where appropriate, universities should collaborate with state and local health departments or other organizations concerned with disability prevention.

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Disability in America: Toward a National Agenda for Prevention ACCESS TO CARE AND PREVENTIVE SERVICES Many persons with disabilities are not covered by Medicare or Medicaid and have little access to private coverage because they either are unemployed or have been rejected for insurance because of their disabilities. Thus the problem of access to care is even greater for people with disabilities than for the general American population. Moreover, persons with disabilities and those at risk of disability are disproportionately poor, making it difficult for them to purchase insurance, make required copayments, or purchase essential services and equipment for their rehabilitation. In addition, poverty compounds the difficulties faced by those with disabilities in gaining recognition of their needs (which are often complicated by the social circumstances associated with poverty) and in developing satisfactory relationships with health providers. Accessible, Affordable Quality Care The committee recognizes that the problems of access to health care are deeply embedded in the organization of the U.S. health insurance system and its relationship to employment and other issues. The committee is also aware that resolution of many of the problems identified in this report will require a fundamental restructuring of the financing and organization of the nation's health services. This committee was not charged with addressing these larger issues; nevertheless, its members feel strongly that the gaps in the nation's present system contribute to an unnecessary burden of disability, loss of productivity, and lowered quality of life, and that the United States must make basic health services accessible to all. Thirty to forty million Americans, including millions of mothers and children, do not have health care insurance or access to adequate health services. Even those Americans who have health care insurance are rarely covered for (and have access to) adequate preventive and long-term medical care, rehabilitation, and assistive technologies. These factors demonstrably contribute to the incidence, prevalence, and severity of primary and secondary disabling conditions and, tragically, avoidable disability. Recently, the U.S. Bipartisan Commission on Comprehensive Health Care (the Pepper Commission) recommended a universal insurance plan that emphasizes preventive care and identifies children and pregnant women as the groups whose needs should be addressed first. In addition, the American Academy of Pediatrics (AAP) has developed a specific proposal to provide health insurance for all children and pregnant women. The AAP proposal presents several principles relative to ensuring access to health care, as well as estimates of program costs and a package of basic benefits. Many aspects of the proposal could have favorable effects on the cost of health care

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Disability in America: Toward a National Agenda for Prevention (e.g., prenatal care should lower expenditures for intensive care of newborns and subsequent disabling conditions). The committee believes that a system that provided accessible, affordable quality health care for all would have an enormous beneficial effect on the prevention of disability. Yet the economic and political hurdles to that end are formidable, and a near-term solution is not in sight. A first step that has been proposed is to provide quality health care services for all mothers and children (up to age 18). These services have a high probability of preventing disability; however, assessing or evaluating their cost implications was not part of the charge to this committee. RECOMMENDATION 16: Provide comprehensive health services to all mothers and children Preventing disability will require access by all Americans to quality health care. An immediate step that could be taken would be to ensure the availability of comprehensive medical services to all children up to the age of 18 and to their mothers who are within 200 percent of the poverty level; in addition, every pregnant woman should be assured access to prenatal care. When provided, these services should include continuous, comprehensive preventive and acute health services for every child who has, or is at risk of developing, a developmental disability. In certain circumstances—for example, providing prenatal care for the prevention of low birthweight—the economic consequences have been shown to be favorable, but they need to be explored further in other areas of health care delivery. Research on prenatal care has demonstrated that comprehensive obstetric care for pregnant women, beginning in the first trimester, reduces the risk of infant mortality and morbidity, including congenital and developmental disability. Researchers also have documented that women who have the greatest risk of complications during pregnancy—teenagers and women who are poor—are also the least likely to obtain comprehensive prenatal care. Furthermore, in its 1985 report, Preventing Low Birthweight , the IOM showed conclusively that, for each dollar spent on providing prenatal care to low-income, poorly educated women, total expenditures for direct medical care of their low-birthweight infants were reduced by more than $3 during the first year of life. RECOMMENDATION 17: Provide effective family planning and prenatal services Educational efforts should be undertaken to provide women in high-risk groups with the opportunity to learn the importance of family planning services and prenatal care. Access to prenatal diagnosis and associated services, including pregnancy termination, currently varies

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Disability in America: Toward a National Agenda for Prevention according to socioeconomic status. The committee respects the diversity of viewpoints relative to those services but believes they should be available to all pregnant women for their individual consideration as part of accessible, affordable quality care. Even among privately or publicly insured people with disabilities, access to needed services is often a problem. Coverage may be limited by an arbitrarily defined ''medical necessity" requirement that does not permit reimbursement for many types of preventive and rehabilitative services and assistive technologies. Insurance policies tend to mirror the acute care orientation of the U.S. medical system and generally fail to recognize the importance and value of longitudinal care and of secondary and tertiary prevention in slowing, halting, or reversing deterioration in function. The presumption, which has never been thoroughly evaluated, is that rehabilitative and attendant services, assistive technology, and other components of longitudinal care are too costly or not cost-effective. Access to health care, particularly primary care, is a major problem for persons with disabilities. Many report that they have great difficulty finding a physician who is knowledgeable about their ongoing health care needs. They also have problems obtaining timely medical care and assistive technology that can help prevent minor health problems from becoming significant complications. National data indicate that, relative to the general population, persons with disabilities, regardless of age, have high rates of use of health care services such as hospital care. The problem of access to care for persons with disabilities transcends the availability of insurance or a regular relationship with a health professional (although for many large gaps exist in both these areas). More important is that the person have access to appropriate care during the full course of a disabling condition. Such care should be provided in a way that prevents secondary conditions and maximizes the person's ability to function in everyday social roles. It must have continuity and not be restricted by arbitrary rules that limit services necessary for effective rehabilitation and participation in society. Persons with disabilities often face enormous impediments to obtaining the coordinated services they need to prevent secondary conditions and improve their opportunity for successful lives. Such impediments include (1) lack of support from insurance and other funding agencies, (2) lack of locally available services, and (3) absence of local coordinating mechanisms. RECOMMENDATION 18: Develop new health service delivery strategies for people with disabilities New health service delivery strategies should be developed that will facilitate access to services and meet the primary health care, health education, and health promotion needs of people with disabling conditions.

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Disability in America: Toward a National Agenda for Prevention These strategies should include assistive technologies and attendant services that facilitate independent living. Although persons with disabling conditions are not by definition sick, they ordinarily have a thinner margin of health that must be scrupulously maintained if they are to avert medical complications and new functional limitations. Accordingly, the programs of health maintenance and health promotion advocated for the general population are especially important to persons with disabilities. Unfortunately, some of the health promotion strategies commonly used among people without disabilities are not appropriate for people with disabilities (e.g., some aerobic exercises for those unable to use their lower limbs). Thus there is a need to develop and implement health education and health promotion strategies specifically targeted toward persons with disabling conditions. RECOMMENDATION 19: Develop new health promotion models for people with disabilities Health promotion activities for people with disabling conditions should be developed and evaluated as part of the process of establishing a normal balance of activity within an individual's life. Health promotion efforts should include recreational and avocational activities that correspond to the individual's interests and activity patterns prior to acquiring the disabling condition. Demonstration projects should be initiated to test (1) new health education and health promotion strategies using independent living centers and other innovative hospital and community-based organizations, and (2) the cost-effectiveness of assistive technologies that will enable people with disabling conditions to pursue health promotion strategies that would not otherwise be accessible to them. Building Capacity A network of services that include information and instruction regarding personal care and assistance in finding a job is an important aspect of a National Disability Prevention Program. Public and private providers of services will need to work together in order to implement prevention strategies and provide needed assistance and longitudinal care. Effective delivery of the spectrum of prevention services to people who have a high risk of developing a disability and to those who already have disabling conditions is a formidable challenge. Unfortunately, most communities fall short of this goal. A series of community-based demonstration and evaluation projects carried out in various geographic areas and sociopolitical environments would help refine definitions of need as well as identify fresh initiatives for prevention that could be adapted to different areas of the country.

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Disability in America: Toward a National Agenda for Prevention RECOMMENDATION 20: Foster local capacity-building and demonstration projects The NDPP should support capacity-building and demonstration programs for state and local organizations to prevent primary disabilities and secondary conditions. The community-based demonstrations (including Health Care Financing Administration demonstrations) should emphasize surveillance, interventions and assessment of their effectiveness, and the special needs of low socioeconomic status populations (e.g., prenatal care, access to and financing of preventive services, and health promotion and disability prevention education). RECOMMENDATION 21: Continue effective prevention programs Public health programs with proven efficacy in the prevention of disability should receive continued federal support. Those programs that show promise should be continued and evaluated further. Priorities for additional support and evaluation should include the following few examples: Head Start and comprehensive day care programs; state-based systems to provide family-centered, community-based, multidisciplinary services for children with or at risk of chronic and disabling conditions; and interventions to reduce adverse outcomes associated with alcohol and other drug use in pregnancy. Access to Vocational Services Vocational services are crucial to ensure that return-to-work goals are achieved. These services may include counseling and work readiness evaluations, job training, job placement, work-site modification, and postemployment services (e.g., Projects with Industry) to ensure satisfactory adjustment and assistance in sustaining employment. RECOMMENDATION 22: Provide comprehensive vocational services Vocational services aimed at reintegrating persons with disabilities into the community and enabling them to return to work should be made financially and geographically accessible. PROFESSIONAL AND PUBLIC EDUCATION The prevention of disability requires not only access to care and restructuring of services but also a radically different mind-set among many health and other professionals (e.g., psychologists, sociologists, educational specialists) and the general public. As the committee observes throughout its report, the attitudes and behavior of health professionals and the public

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Disability in America: Toward a National Agenda for Prevention could either facilitate effective coping and productive lives for persons with disabilities or erect obstacles in their path. For example, many secondary conditions are preventable, but health professionals often are not familiar with the intervention strategies that can be used, and many provide inappropriate care as a result. Education of Professionals The committee notes that the field of physical medicine and rehabilitation is one of only a few medical specialties with a shortage of physicians. This situation is not surprising because rehabilitation has had a low priority in medical schools and residency training programs, and many do not even offer courses on disability and rehabilitation. Similarly, personnel shortages exist in physical therapy, speech therapy, occupational therapy, and all allied health and nursing disciplines dealing with disability. Yet the problem goes well beyond these shortages. Even if the numbers of practitioners in these specialties were substantially increased, many problems would remain (e.g., there are few incentives for practicing the types of longitudinal care this committee advocates, and health professionals who follow these careers historically have had little recognition and prestige within their professional groups). In addition, longitudinal care, which has its own special appeal, is also "patient intensive" and requires complex teamwork, two factors that may outweigh its rewards in the minds of many health professionals. Steps must be taken to ease the current shortage of knowledgeable physicians, allied health professionals, and others (e.g., psychologists, sociologists, educational specialists) working in disability prevention. In fact, all specialties should have a better understanding of the process of disability and appropriate modes of preventive intervention. The longitudinal care described in this report is sometimes provided by specialists in physical medicine and rehabilitation, but most typically it will be provided by general internists, family physicians, psychiatrists, psychologists, social workers, and others. Any long-term strategy must address the education of a broad range of these professionals as part of a national agenda for the prevention of disability. RECOMMENDATION 23: Upgrade medical education and training of physicians Medical school curricula and pediatric, general internal medicine, geriatric, and family medicine residency training for medical professionals should include curricular material in physical medicine, rehabilitation, and mental health. In addition, such curricula should address physiatric principles and practices appropriate to the identification of potentially disabling conditions of acute illness and injury. appropriate interventions, including consultation and collaboration with mental health and allied

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Disability in America: Toward a National Agenda for Prevention health professionals, social workers, and educational specialists, and the application of effective clinical protocols should also be included. RECOMMENDATION 24: Upgrade the training of allied professionals Allied health, public health, and other professionals interested in disability issues (e.g., social workers, educational specialists) should be trained in the principles and practices of disability prevention, treatment planning, and rehabilitation, including psychosocial and vocational rehabilitation. RECOMMENDATION 25: Establish a program of grants for education and training A program of grants to medical schools and teaching hospitals, as well as to allied health and other professional schools, emphasizing disability issues should be established for the development of educational programs in the prevention and management of disability and secondary conditions. Such grants should include components that support education, training, and social reintegration of people with disabilities as well as basic clinical training in the prevention of disability and secondary conditions. Education of the General Public Because disability is a function of social context, many potentially disabling conditions can be prevented with the help of an appropriately informed public. If full participation of all citizens in the society is encouraged and facilitated, the general public will have increased contact with people who possess disabilities. This type of interaction should help relieve the prejudice and ignorance often found among those who have little first-hand experience of disability and serve to diminish the estrangement, isolation, and depression often felt by persons with potential disabilities. As part of a national agenda for the prevention of disability, a broad approach to public education is needed to communicate several important messages: (1) a great number of people (about 35 million) from all walks of life have potentially disabling conditions; (2) most disability is preventable; and (3) people with disabilities have rights, productive capacity, and the potential for a high quality of life. RECOMMENDATION 26: Provide more public education on the prevention of disability The general public should be made aware that disability and premature death can be prevented by reducing the risks associated with these conditions. The public should also be educated regarding the civil rights of persons with disabilities, which are guaranteed by law, and the role rehabilitation

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Disability in America: Toward a National Agenda for Prevention and environmental modifications can play in reducing disability and increasing functional ability and quality of life. Education of Persons with Disabilities and Their Families, Personal Attendants, and Advocates People with disabilities and their families, personal attendants, and advocates should be better informed about the principles of disability prevention. Such education would contribute significantly to the prevention of disability and secondary conditions—those brought about by poor self-care as well as those induced by a lack of needed social and other support services, architectural inaccessibility, unequal educational and employment opportunities, negative attitudes toward disability, changes in living environments, and greater exposure to disruptive, frustrating events. Independent living centers, which are controlled and staffed by persons with disabilities, are designed to deal with the prevention of secondary conditions and to be a source of information on the practical aspects of daily living with a disability. Because these centers are usually staffed by persons with disabilities who are living independently, they offer advice based on first-hand experience of the motivation and ingenuity needed to pursue an independent lifestyle. Being able to share experiences with peers who are independent brings to light those coping mechanisms that aid in preventing secondary conditions. Independent living centers are also effective advocates for attitudinal and architectural changes in society that would improve accessibility, stimulate social interaction and productivity, and facilitate an active, quality lifestyle. RECOMMENDATION 27: Provide more training opportunities for family members and personal attendants of people with disabling conditions Persons with disabilities, their families, personal attendants, and advocates should have access to information and training relative to disability prevention with particular emphasis on the prevention of secondary conditions. Independent living centers and other community-based support groups provide a foundation for such training programs and offer a source of peer counseling.