Disability in America Toward a National Agenda for Prevention (1991) / Chapter Skim
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Executive Summary
Executive Summary
Pages 1-31
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· About 35 million Americans (one in every seven) have disabling conditions that interfere with their life activities.
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To help these individuals restore functional capacity, avert further deterioration in functioning, and maintain or improve their quality Rate per 1,000 Cond itions: intellectual limitation Sensory limitation 1- -- -- - - - -1 1~41 Chronic diseases Mobility limitation Other /// ///// /////// /////// , ......................
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Good disability prevention strategies must be built on strong basic knowledge of the relationships between risk factors, disabling conditions, quality of life, and secondary conditions. Until now, approaches to the prevention of disability have been significantly limited by the narrowness of conceptual views and inadequate data.
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Additional financial resources may not be needed for many of the prevention measures noted here so much as a commitment to coordination, program planning, and service delivery to form a network that is readily accessible by consumer populations. TOWARD A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION Despite an officially stated national goal of independence and equality of opportunity for people with disabilities, current approaches to preventing disability and improving the lives of people with disabling conditions lack conceptual clarity and unity of purpose.
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Time and resources did not permit a review of all areas of disability. Mental health conditions, for example, are discussed only briefly as secondary conditions and, to a lesser extent, as primary conditions.
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The committee's alternative framework draws on the widespread acceptance and success of the ICIDH and the conceptual clarity and terminology of the Nagi framework, and then adds risk factors and quality of life into a model of the disabling process. Committee members found that this framework and model improved their understanding of the relationships among and between components of the disabling process and helped them identify strategic points for preventive intervention.
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, and lifestyle and behavioral risk factors that influence each stage of the disabling process; the relationship of the disabling process to quality of life; and the stages of the disabling process that often precede disability. A brief description of the components of the model follows.
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Identifying such factors can be a first step toward determining a mechanism of action in the disabling process and then developing preventive interventions. The disability research and service communities have not yet adopted a systematic, comprehensive conceptual model for understanding disability risk factors.
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__ . ~ , Events e.g., falls, infections Quality of Life 9 FIGURE 4 Model of disability showing the interaction of the disabling process, quality of life, and risk factors.
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Research indicates that a person's perception of quality of life influences his or her responses to potentially disabling conditions and therefore outcomes. In turn, each successive stage in the disabling process poses an increasing threat of diminished quality of life.
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Not included in this cost estimate are programs and services for the additional 5-10 percent of all children who have learning disorders and require special education services. Research has led to a number of important measures for preventing potentially disabling conditions that are acquired during childhood or that are the product of events during prenatal development.
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In the l950s, only people with low-level paraplegia were generally expected to survive; today, even people with high-level quadriplegic survive and live lives of high quality. A national study found that quadriplegic continues to be the outcome for half of all people who sustain spinal cord injuries; however, the proportion of people with quadriplegic who have neurologically incomplete lesions and therefore retain some motor control and sensation increased from 38 percent in 1973 to 54 percent in 1983.
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and behavioral risk factors associated with secondary conditions. Implementation of the protocols, of course, will require the participation of a wide spectrum of professionals in medical and nonmedical fields, as well as the people with disabling conditions themselves, their families, personal attendants, and advocates.
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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.
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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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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 and developmental disabilities, and the secondary conditions that are often associated with them.
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17 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.
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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.
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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)
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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 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.
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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.
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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.
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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.
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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.
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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 (e.g., prenatal care should lower expenditures for intensive care of newborns and subsequent disabling conditions)
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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.
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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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For example, many secondary conditions are preventable, but health professionals often are not familiar with the intervention strategies that can be used, and may 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.
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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 health professionals, social workers, and educational specialists, and the application of effective clinical protocols should also be included.
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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.
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EXECUTIVE SUMMARY 3 LIST OF RECOMMENDATIONS A NATIONAL AGENDA FOR THE PREVENTION OF DISABILITY ORGANIZA TION AND COORDINA TION Develop leadership of National Disability Prevention Program at CDC Develop an enhanced role for the private sector Establish a national advisory committee Establish a federal interagency council Critically assess progress periodically SURVEILLANCE Develop a conceptual framework and standard measures of disability Develop a national disability surveillance system Revise the National Health Interview Survey Conduct a comprehensive longitudinal survey of disability Develop disability indexes RESEARCH Develop a comprehensive research program Emphasize longitudinal research Conduct research on socioeconomic and psychosocial disadvantage Expand research on preventive and therapeutic interventions Upgrade training for research on disability prevention ACCESS TO CARE AND PREVENTIVE SERVICES Provide comprehensive health services to all mothers and children Provide effective family planning and prenatal services Develop new health service delivery strategies for people with disabilities Develop new health promotion models for people with disabilities Foster local capacity building and demonstration projects Conti n ue effective prevention programs Provide comprehensive vocational services PROFESSIONAL AND PUBLIC EDUCATION Upgrade medical education and training of physicians Upgrade the training of allied professionals Establish a program of grants for education and training Provide more public education on the prevention of disability Provide more training opportunities for family members and personal attendants of people with disabling conditions
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