text
stringlengths 694
4.74k
| source
stringclasses 1
value |
|---|---|
PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING187About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING188About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
elderly (National Center for Health Statistics, 1989a). As noted in Chapter 2, however, one limitation of the NHIS data is that they are self-reported with no objective measurements. FIGURE 6-1 Prevalence to top 10 chronic conditions, age 65 and over, 1988. Source: National Center for Health Statistics, 1989a. Because of the large and significant contribution that chronic disease and aging make to disability, an in-depth study of this relationship is warranted. It should focus on disability prevention, health promotion, quality of life, and implications for public health. Chronic Conditions Causing Disability The higher-ranking prevalent chronic health conditions are not necessarily those that cause the most disability (defined here in terms of activitylimitations). For example, a recent analysis by La Plante (1989b), based on fouryears (1983-1986) of the NHIS, showed an inverse relationship between the prevalence of chronic health conditions and the risk of disability. As shown in Figure 6-2, conditions with high prevalence have low risks of disability, whereas conditions low in prevalence have high risks of disability. Forexample, sinusitis ranks highest in prevalence for all ages, but less than one-halfof 1 percent of the persons with this condition report being limited in activity. By contrast, the three least prevalent conditions —absence of arms and/or hands, multiple sclerosis, and lung or bronchial cancer —have significantly higher risks of disability. Three-fourths of those with lung or bronchial cancer report beinglimited in activity. Current data on chronic and disabling conditions are restricted to national PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING189About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
samples derived from cross-sectional surveys and provide only basic measures of activity limitation. Because most health and social service programs arecoordinated at the state level, the lack of state-specific data hampers planning ofservices. Existing data systems are insensitive to changes in the prevalence ofimpairment and disability over time, and they do not measure the degree oflimitation and disability that results from specific chronic diseases and mental illnesses, also undermining planning of prevention strategies. FIGURE 6-2 Percent of specific chronic conditions causing activity limitation for the five most prevalent and five least prevalent conditions, 1983-86. Source: La Plante, 1989b. Reprinted with permission. Data collection reflects this nation's emphasis on acute care. It is episodic, and fixed on single points in time. In contrast, chronic diseases, by definition,are long-term conditions, and their impacts change over time. Surveillance methods do not permit us to track the series of changes in health status, functional capacity, and quality of life that people with chronic disease are likely to experience. National and state systems of surveillance of disabling conditions should be refined so PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING190About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
that functional limitation and disability resulting from chronic diseases and mental disorders can be measured and changes in the prevalence of these conditions can be monitored over time. Multiple Chronic Conditions Multiple chronic conditions have a significant impact on disability status. Many people, especially the elderly, have multiple chronic and potentiallydisabling conditions. Data from the NHIS for the three-year period from 1979to 1981 indicate that multiple chronic conditions causing limitation of activityincrease with age. For example, among those who report chronic conditions that cause limited activity, only 15 percent of the group under age 17 reported more than one condition; this proportion increased to 40 percent for those aged 75and older (Rice, 1989). In recent years, more people are reporting that they have chronic conditions that limit their activities. Analysis and comparison of the NHIS datafrom two three-year periods, 1969-1971 and 1979-1981, showed that theprevalence rate of limitations in activity increased significantly (Rice and La Plante, 1988a). The rate increased more than one-fifth, from 119 to 145 per1,000 persons, for the entire noninstitutionalized population, with greater increases for women than for men. The largest increases occurred for children and youth and for middle-aged persons, 45 to 64 years of age, especially for the"most disabled" —those unable to carry on their major activity. The prevalence rate of limitation declined slightly in later years (ages 75 and over), indicatingthat the health of the very old living in the community may have improvedslightly. Comparison of health indicators over time for the very old, however,must account for changes in institutionalization, and this factor was notaddressed in that report. People with disabling conditions reported more chronic conditions and more days of restricted activity over the ten-year period 1969-1971 to1979-1981. The number of chronic conditions per person causing limitation ofactivity increased 12. 5 percent, from 1. 32 to 1. 48 per person with increasesreported for all ages (Rice and La Plante, 1988a). The greatest increase was fornoninstitutionalized persons aged 85 and older, suggesting worsening health asthe probable explanation. In general, the more severely limited population reported the greatest increases in multiple chronic conditions, which suggests that persons may be living longer with severely limiting chronic conditions. Other researchers have found similar trends. Verbrugge (1984) analyzed past trends in specific chronic conditions, in disability (as defined by activitylimitation), and in mortality for middle-aged and older persons reported in the NHIS over a 23-year period, 1958 to 1981. For middle-aged people, 10 of the11 chronic diseases with high mortality rates had become more PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING191About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
prevalent; over the same period, however, mortality rates declined for 8 of those diseases. Increased morbidity and declining mortality trends in chronicconditions for the elderly were similar. Verbrugge also noted an increase sincethe late 1960s in limitation of activity. She suggests that these increases may becaused by a variety of factors: there may be changes in "true" incidence andsurvival rates, individuals may be more accepting of and accommodating to their conditions, and they may be more likely to adopt the sick role than in the past. Using data for nine commonly reported chronic conditions from the 1984 Supplement on Aging of the NHIS, Guralnik and colleagues (1989b) showedthat the prevalence of comorbidity (multiple conditions) is substantial amongthe population aged 60 and older. High rates of comorbidity were reported forwomen, with prevalence rates rising from 45 percent in the age group 60 to 69years to 70 percent in those 80 years and older. For those 60 years of age andolder who had no chronic conditions, only 2. 1 percent of men and 2. 3 percent of women required assistance in performing one or more activities of daily living (ADLs). These rates increased to 8. 6 percent for men and 6. 9 percent forwomen who had 2 chronic conditions and to 22 percent for men and 15. 7percent for women who had 4 chronic conditions. In addition, there was a clearassociation between the number of conditions and the proportion of people withdisability as assessed by inability to perform activities or self-care. The authorsfound that, for the most commonly reported pairs of comorbid conditions (i. e.,high blood pressure and arthritis), the observed coprevalence was consistentlyhigher than expected. Possible explanations for this finding include (1)detection bias (those with one condition may have more contacts with themedical care system and a greater likelihood of being diagnosed with a secondcondition); (2) response patterns (people who report one disease may be more likely to report having other diseases); and (3) biological basis (genetic and environmental factors may increase susceptibility to disease). Limitation in Basic Life Activities Measures of functioning in basic life activities, including ADLs and instrumental activities of daily living (IADLs), are important indicators ofhealth status and disability. Analysis of data from the 1979 and 1980 Home Care Supplement to the NHIS shows 5. 4 million persons who reported needingassistance in ADLs or IADLs; of this total, 43 percent were under age 65(La Plante, 1989b). Middle-aged adults who need assistance are somewhat morelikely than either children or older adults to use equipment and to be less dependent on help from others. Children and people aged 85 and older are also more likely to need assistance in multiple activities and to need help fromothers more often. PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING192About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Nonelderly and elderly persons with assistance needs living in the community have very similar levels of disability and use of health services. Ofpersons who need help in basic life activities, however, the elderly are morelikely than the nonelderly to need someone with them at home all or most of thetime. La Plante (1989a) concludes that if rates of assistance needs are notreduced in successive age cohorts during the next several decades, the population with assistance needs will grow as these cohorts become older. LIFE COURSE PERSPECTIVE ON DISABILITY AND ITS PREVENTION The life course provides a useful framework for considering disabling conditions and their prevention. For persons 60 years of age and older, 8 out of10 have one or more chronic diseases or impairments (Guralnik et al., 1989b). Roughly 40 percent of the elderly population have some activity limitation, andabout 17 percent need assistance in basic life activities (La Plante, 1989b). The age gradient for assistance in basic life activity measures (ADLs and IADLs) is particularly evident from age 55 onward. By age 85, the risk ofsignificant disablement approaches 50/50. The older population, therefore,constitutes a particularly important group for studying the potential limits ofpreventing or minimizing disability. Not only is the risk of disability in late lifegreat, but the population aged 65 and older is also large and growing. Anestimated 12. 7 percent of the total U. S. population in 1990, 31. 7 millionpersons, are 65 years of age or older; this population group is forecast to grow by the year 2020 to 51. 4 million, or 17. 3 percent of the total population, and to 67 million persons, 21. 7 percent of the total, by 2040 (U. S. Bureau of the Census, 1984). Thus the incidence and prevalence of disability will risesignificantly in the foreseeable future. A Dynamic View of Disability as a Process During the past two decades, the potential for modifying some processes of aging and for reducing disabling conditions in older populations has beenidentified in both research and practice. Gerontological and geriatric researchand practice have laid a solid foundation for therapeutic optimism regarding theprevention of excessive disability and the rehabilitation of older individuals. Indeed, the notion that prevention or reduction of disability is relevant onlyearly in the life course can no longer be defended (Maddox, 1985; Rowe and Kahn, 1987; Riley and Riley, 1989). Research on disability as a dynamic process, not just a static condition, has contributed greatly to the emergence of an optimistic perspective on reducing disablement during adulthoods. Forexample, in a longitudinal study of disabiling conditions in a large sample PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING193About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
of people 65 years of age and older with ADL and IADL impairments (the National Long-Term Care Survey), the stereotypical view of age-relatedmonotonic decline in functional capacity was clearly contradicted (Manton,1988). In the first two years of this continuing study (1982-1984), 81. 6 percentof the older adults who in 1982 did not have disabling conditions remained freeof them two years later. Of the persons who had chronic disabling conditions in 1982, notable proportions were significantly improved two years later. For example, 22. 2 percent of the persons who were most limited (5 to 6 ADLimpairments) and 23. 7 percent of those who were moderately limited (3 to 4ADL impairments) showed an improvement in functional status two years later. Research evidence is accumulating that a broad range of interventions have demonstrable beneficial effects in reducing the risk of disability associated withaging. Riley and Riley (1989) provide an excellent collection of relevant articlesthat review the research documenting the modifiability of some agingprocesses. Some cognitive loss, for example, typically described as an inevitable concomitant of aging, is known to be reversible under a variety of conditions. Conceptions of self can be improved, as can an individual's sense ofempowerment to take interest in, and some responsibility for, self-care, even invery old institutionalized individuals with severe limitations. In addition, thecapacity of older adults to benefit physically from systematic exercise has beenrepeatedly demonstrated (Fries, 1988). Older adults constitute, in sum, aninteresting case of the modifiability of disablement from chronic diseases andimpairment over the entire life course through risk factor reduction. A relatedquestion to be pursued in future research is the effect of not sustainingpreviously developed healthy lifestyles in later years. Without further evidence,old age cannot be assumed to provide immunity from the risks of unhealthylifestyles. Some of the beneficial interventions to prevent or reduce disability are self-initiated, such as adopting and maintaining healthy lifestyles. Researchindicates that healthy lifestyles are as characteristic of older adults as they are ofadults generally (Berkman and Breslow, 1983; Kaplan and Haan, 1989). Healthprofessionals, however, can and do play an important complementary role inlimiting or reversing the consequences of potentially disabling disease or impairment. Timely access to geriatric assessment with appropriate follow-up services has, in randomized controlled trials, proved to be beneficial inimproving both functional capacity and more effective use of health resourcesamong older patients (Chernoff and Lipschitz, 1988). The ultimate supportingevidence of improving functional status through systematic intervention isfound in geriatric rehabilitation. Even difficult problems in later life, such asthose related to incontinence and osteoporosis, have in many instances provento be amendable to skilled rehabilitative intervention. Beneficial outcomes areknown to be more likely in geriatric rehabilitation PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING194About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
when attention is given to the psychosocial variables of personal and social resources (Riley and Riley, 1989). The widely varying needs of persons with disabling conditions demand a multidisciplinary collaborative approach among many professionals andorganizations. The interventions should be determined by the needs of eachindividual rather than by rigid definitions of disabilities. Collaborative projects involving primary care providers, public health agencies, voluntary associations, and the community should be developed to coordinate disability prevention programs that implement interventions centered on individual needs with a goal of improving an individual's physical, mental, and social well-being over the life course. Aging Differently Research has demonstrated the error in thinking that older adults are all alike or that they become more alike as they age (Maddox and Lawton, 1989;Rowe and Kahn, 1987). For example, among those 65 years of age and older,the risk of acquiring a disabling illness differs significantly among thecategories of the younger old (65-74), the old (75-84), and the oldest old (85and older). Patterns of disability, morbidity, and mortality also differsignificantly between males and females, and the risk of disabling conditionsamong older adults is known to be associated with poverty, inadequate education, and social isolation (see Chapter 2 ). The increased awareness of the diversity of health status in later life has had a salutary effect on health andwelfare professionals who are increasingly less likely to use "being older" (i. e.,over 65) as an explanation of disability or as a justification for failing tointervene in the interest of improving the quality of life among impaired olderadults. DEVISING APPROACHES TO PREVENTION Disease prevention and health promotion must be pursued throughout life. It is now well recognized that chronic conditions often can be prevented. Forexample, it has been estimated that 70 percent of all cancer cases arepreventable through changes in lifestyles (e. g., cessation of smoking). Nonetheless, it would be naively optimistic to assume that all chronic diseasecan be prevented, even though the risk of developing these conditions can bereduced. Mounting evidence clearly indicates, however, that adopting healthfulbehaviors even late in life can be beneficial, perhaps preventing the progressionof impairments to functional limitations and disability. In addition, it is clear that existing knowledge points the way to effective approaches to averting or mitigating the potentially debilitating consequences of some PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING195About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
chronic diseases. For example, much can be done to reduce the risk of disabling conditions for people with diabetes, but as the box entitled Preventing Diabetes-Related Disability explains, the disease persists as one of the leading causes ofdisabling conditions. Thus, although much is known about the prevention of certain chronic diseases and associated disabling conditions, sometimes the preventive andrehabilitative interventions that are used are not underlain by sufficientunderstanding, and their effectiveness has not been thoroughly evaluated. Moreover, prevention efforts are hampered by limited understanding of the natural histories of many chronic diseases, of the aging process, and of the relationships among chronic disease, aging, and functional outcomes. Thus itmust be recognized that our knowledge has limits and that we often fail totranslate existing knowledge into practice. The limitations of care delivery systems must also be recognized. The needs of people with long-term conditions mesh poorly with a health caresystem that is oriented toward the treatment of acute conditions, where care isakin to crisis management. People with chronic conditions require continuity ofcare and their needs are diverse, encompassing more than medical treatment. If, for example, social support is lacking, a person's well-being may deteriorate despite the availability of adequate health care. Unfortunately, systems for thedelivery of social services are fragmented and fail to achieve the continuity thatpeople with chronic conditions often require. The remainder of this section describes an approach for conceptualizing disability prevention during the life course among people with chronic disease,summarizes some opportunities for prevention, and discusses shortcomings incurrent systems for the delivery of health care and social services. Much of thediscussion focuses on the prevention and management of chronic disease in the elderly. Perspective on Preventing Disability Among People with Chronic Disease Unlike acute conditions and injuries, chronic diseases often do not have an identifiable point of onset, and they frequently entail gradually progressivedeclines in functional capacity. In terms of the committee's model of thedisabling process (see Chapter 3 ), people with chronic diseases are usually first identified when their condition is at the impairment stage (i. e., with a loss orabnormality of physiological, psychological, or anatomical structure or function). People with chronic disease are at increased risk of functional limitation and disability, and, absent effective preventive measures, the quality of theirlives is also likely to decline. In the minds of many —layman and professional alike —the aging processes during the later stages of adulthood are virtually synonymous with chronic disease, and prospects for improvement PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING196About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTING DIABETES-RELATED DISABILITY Diabetes is a leading cause of disability, particularly among the elderly. Approximately 7 million people in the United States have been diagnosed with diabetes, and an additional 5 million may unknowingly have the disease. The prevalence rate of diabetes increases with age; about 10 percent of persons 65 years or older have been diagnosed with diabetes. Disability from diabetes result from the major complications of the disease —cardiovascular disease, peripheral vascular disease, and neuropathy, blindness, and kidney failure. These conditions are largely preventable (Herman et al., 1987). Most people with diabetes have non-insulin-dependent, or type II, diabetes. The disorder usually appears after age 40 and is frequentlyassociated with obesity. Prevention and control of obesity may be effective in the primary prevention of diabetes; however, a successful strategy for primary prevention has not yet been demonstrated. Existing approaches to reducing disabling conditions and premature mortality caused by diabetes rely on secondary and tertiary prevention of complications. Cardiovascular disease is a leading cause of mortality among people with diabetes, accounting for half of all diabetes-related deaths. Reducing the rest of cardiovascular disease among diabetic persons primarily entails eliminating or reducing the traditional risk factors associated with the disease, such as cigarette smoking and hypertension. About half of people with diabetes have uncontrolled hypertension, and 27 percentsmoke cigarettes. Elimination of these risk factors could decrease deaths due to cardiovascular disease by more than one-fourth (Centers for Disease Control, 1989a). About half, or 50,000, of all nontraumatic amputations in the United States are performed on people with diabetes. Half of all lower-extremity amputations can be prevented through proper foot care and by reducing risk factors for peripheral vascular disease and neuropathy. These riskfactors include hyperglycemia, cigarette smoking, and uncontrolled hypertension (Herman et al., 1987). Diabetes is the leading cause of new cases of adult blindness. Clinical trials have demonstrated that approximately 60 percent ofdiabetes-related blindness can be prevented with early detection and treatment (Herman et al., 1987). Since 1983, the number of patients initiating treatment for end-stage renal disease (ESRD) attributable to diabetes has been increasing by about 10 percent per year. About 20,000 people with diabetic ESRD are sustained through maintenance dialysis. Control of hyperglycemia and hypertension are recommended for preventing and slowing theprogression of diabetes-associated renal disease (Herman et al., 1987). Blacks, Hispanics, and Native Americans are at increased risk for diabetes and many of its complications, making these groups prime targets for preventive efforts. To reduce disability from diabetes, all peoplewith the disease must have access to sustained preventive care. Access to qualified health care providers and referral to appropriate facilities with adequate resources must be improved, particularly for minority populations. PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING197About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
are dismissed as highly doubtful. The elderly are viewed as being in a state of inevitable physical and mental decline, resulting in a deteriorating quality oflife and, eventually, total dependence. Indeed, about 80 percent of people age60 and older have at least one chronic disease (Guralnik et al., 1989b), andabout 40 percent of those age 65 and older have an activity limitation, includingthe 17 percent who require assistance in performing some basic life activities (La Plante, 1989b). Yet to view people in late adulthood as being in an irreparable state of decline is to ignore the tremendous diversity amongindividuals who are collectively identified as the elderly. As the committee's model of the disabling process suggests, there are numerous opportunities for intervening and modifying the risk factors thatpredispose people with chronic diseases to disability. Obviously, the goals ofpreventing, or at least delaying, the onset of disability and of minimizing theseverity of its consequences become more challenging as the age of the targetpopulation increases and as the risks of chronic disease, comorbidity, and functional limitation also increase. As mentioned earlier, from age 55 onward, the risk of requiring assistance in basic life activities rises sharply, and by age85 the risk of disability approaches 50 percent. Still, disability is not a faitaccompli even among the oldest of the elderly. At issue is not whether preventive interventions are beneficial but rather what those interventions should be and how they should be evaluated. Traditionally, the evaluative standard has been improvement in health status. But this standard, borrowed from acute care, is too confining to guidedevelopment and assess the effectiveness of prevention measures for chronic disease and disability. A more appropriate standard is quality of life, of which health status is one component. Even when functional capacity cannot berestored, it is indeed possible to improve well-being and to facilitate personalautonomy by addressing factors in an individual's social situation. The fields of gerontology and geriatrics recognize the importance of interventions to achieve the broader goal of improving quality of life. In thesefields, the concept of successful aging has been advanced to expand the focus ofpractitioners beyond health status to include assessments of the quality of day-to-day life. Successful aging, or aging well, does not imply freedom from disabling conditions. One is aging well when one maintains a satisfying sense of continuity and can fulfill expectations of personal independence and socialparticipation. Despite the physiological and psychological stresses that canaccompany advancing age, many older adults have the vitality and resilience tofunction at a high level. Moreover, frailty and dependence need not preclude areasonable quality of life. Conversely, a low quality of life can affect thelikelihood of developing a disability. Just as among younger age groups, therisk of disability among the elderly is associated with poverty, inadequateeducation, poor housing, and social isolation. Therefore, effective management of chronic disease requires an approach PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING198About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
that comprehensively addresses not only the individual's health condition but also his or her total social situation. Indeed, beneficial outcomes have beenshown to be more likely when personal and social variables are taken intoaccount in geriatric rehabilitation programs (Riley and Riley, 1989). The concept of quality of life requires considerable refinement before it can become a widely accepted methodological construct. Nevertheless, even if formulated only in general terms, quality of life as an evaluative standardprovides a cohesive, transcending concept that can guide the composition, organization, and integration of prevention services for people with chronic disease and for the elderly. Needs and Opportunities Although the past 25 years have seen considerable progress in health promotion and the prevention of chronic disease, the need remains for further development and critical evaluation of primary, secondary, and tertiary prevention efforts. Health promotion and other primary prevention efforts thatbegin at the earliest stages of life are among the most effective and areapplicable not only to those who are free of disease or impairment but also tothose with disease and disabling conditions. Moreover, risk-reducing, health-promoting activities are important for the elderly with chronic disease becausethey are already predisposed to functional limitation and disability. In thisregard, it should be noted that the Health Care Financing Administration iscurrently conducting several Medicare prevention demonstration projects. Thesecond interim report on these projects is due to Congress in the spring of 1991,with the final report scheduled for 1993. Secondary prevention measures, which seek to halt, reverse, or at least retard the progress of a condition, and tertiary prevention measures, which concentrate on restoring function and increasing personal autonomy in peoplewho are already limited in functional capacity, are especially important forpeople with chronic disease. Combined with appropriate health promotionefforts, these measures constitute the building blocks of chronic diseasemanagement. Although the particular elements are dictated by the type andnumber of conditions present and their predicted course and by the features ofan individual's social and environmental surroundings, the management ofchronic disease focuses on quality of life, not just health status, and involvesself-care, measures to prevent disease complications, counseling and othermeasures to foster psychosocial coping, and modification of the environment toaccommodate functional limitations. Researchers and service providers have little epidemiological data to guide their efforts to identify effective interventions on which to build chronic diseasemanagement plans. The information that is available describes the PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING199About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
prevalence of disabling conditions but does not yield insights into the factors that underlie the results. Nor is it useful in identifying population groups thathave a higher-than-average risk of developing disability. Greatly needed islongitudinal epidemiological research that tracks the progression to disabilityand identifies the contributing risk factors. Longitudinal studies are needed to help define the dynamic nature of pathology, impairment, functional limitation, and disability, and to describe the natural history of chronic diseases and aging in terms of these conditions. Given the paucity of epidemiological analysis, it is not surprising that many secondary and tertiary interventions have evolved without rigorousscientific evaluation of their effects on functioning and on quality of life. There is a pressing need for studies of the effectiveness and outcomes of disability prevention measures. An associated need is to incorporate existing knowledgeand the results of evaluative studies into consensus guidelines and protocols forpreventive health care services. Despite the serious weaknesses in the foundation upon which disability prevention strategies are built, recent research points to many important opportunities for prevention. Several studies contradict the stereotypical view of age-related monotonic physical and mental decline. An analysis of data fromthe National Long Term-Care Survey, one of the few longitudinal studies ofdisabling conditions, clearly documents the dynamic nature of the disablingprocess and thus suggests opportunities for intervention. In addition, thepotential for older adults to benefit from regular exercise, good nutrition, andsmoking cessation has been reported in several studies (Berkman and Breslow,1983; U. S. Department of Health and Human Services, 1988b; Hermanson etal., 1988). A partial summary of conditions amenable to prevention is presentedin Table 6-3 (German and Fried, 1989). Concurrent with this committee's study, another committee of the Institute of Medicine reviewed research on the prevention of disability after age 50. The IOM Committee on the Prevention of Disability in the Second Fifty has focused on specific chronic diseases and on specific behavioral and social risk factorsthat predispose individuals to disability (Institute of Medicine, 1990b). Topicsinvestigated by the committee include hypertension, medications, infection,osteoporosis, sensory loss, oral health, cancer, nutrition, cigarette smoking,depression, physical inactivity, social isolation, and falls. Based on thatcommittee's report, Table 6-4 presents a summary of what is known about the prevention of disability in each of these areas and of what must be learned toimprove the effectiveness of disability prevention efforts. Even though Table 6-4 is only a partial listing, it suggests several potential PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING200About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
targets for disability prevention. For example, inappropriate prescribing of medications by physicians and improper use of drugs among the elderly poseserious risks to physical and mental health. Certain medications can causedrowsiness or impair coordination, increasing the likelihood of falls andinjuries; they can also reduce appetite, resulting in nutritional deficiencies. Thusimproved education and training of physicians that places greater emphasis on prescribing and drug-monitoring practices that are tailored to the elderly would be beneficial in preventing these conditions. Also needed are public educationprograms and drug labeling practices that foster greater awareness of proper useof medications, particularly when multiple drugs are involved (Montamat et al.,1989). TABLE 6-3 Areas Potentially Amenable to Preventive Health Care in the Elderly Primary Secondary Tertiary Health habits Screening for Rehabilitation Smoking Hypertension Physical deficits Alcohol abuse Diabetes Cognitive deficits Obesity Periodontal disease Functional deficits Nutrition Dental caries Physical activity Sensory impairment Sleep Medication side effects Caretaker support Colorectal cancer Introduction of Coronary heart disease risk Breast cancer support necessaryfactors Cervical cancer to prevent loss Prostatic cancer of autonomy Immunization Nutritionally induced Influenza anemia Pneumovax Depression, stress Tetanus Urinary incontinence Podiatric problems Injury prevention Fall risk Iatrogenesis prevention Tuberculosis (high risk)Osteoporosis prevention Syphilis (high risk) Stroke prevention Myocardial infarction SOURCE: German and Fried, 1989. Reproduced with permission from the Annual Review of Public Health, Vol. 10. Copyright, 1989, by Annual Reviews, Inc. Injury prevention is especially important for the elderly. The incidence of falls increases greatly after age 65. Combined with the high prevalence of osteoporosis among the elderly, falls are responsible for a large portion PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING201About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING202About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING203About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING204About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING205About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
of the 1. 3 million hip fractures that occur annually. Hip fractures, in turn, often result in premature death or increased dependence. A number of age-related factors have been implicated in injuries among the elderly: poor eyesightand hearing, arthritis, neurological diseases, and poor coordination and balance. In addition, medications and preoccupation with personal problems may resultin distractions or drowsiness that leads to injury. Environmental factors such as poor lighting, uneven floor surfaces, and lack of safety equipment also increase the risk of injury. Most of these risk factors can be reduced by modifying thehome environment, monitoring drug usage, and training people to compensatefor physical limitations. Oral health is a neglected area of care for the elderly, even though loss of teeth and oral disease are among the most common impairments in lateadulthood. The impact of these impairments on personal health and onpsychological and social well-being often goes unappreciated. Difficulty ineating and speech limitations are two examples of how dental impairments can exacerbate existing physical and mental conditions. The importance of preventive dental care for the elderly warrants much greater consideration fromservice planners. Although about two-thirds of nursing home residents have a mental disorder (National Center for Health Statistics, 1989b), the role that mentalimpairment plays in the occurrence of disability among the elderly, as well asamong younger segments of the population, is an important area for continuedinvestigation (box follows). The research conducted thus far suggests a strongcorrelation between physically disabling conditions and mental illness, especially depression. Wells and colleagues (1989) found that, compared with patients with physical disorders only, depressed patients reported greater bodilypain, had a lower perception of their health status, and performed more poorlyin physical and social activities. Poor functioning attributed solely to depressivesymptoms was comparable to the level of functioning associated with cancer,cardiovascular disease, and six other major chronic conditions. Given that thelikelihood of depression is high among elderly people who have a physicalillness, these findings underscore the potential health benefits that are likely toresult from the provision of appropriate mental health services. Researchstrongly indicates that depressed older adults are very responsive tointerventions, especially those that focus on fostering socially supportivecontacts and activities (U. S. Department of Health and Human Services, 1988b). As mentioned above and discussed in a recent IOM report (1990b), social isolation is considered an important risk factor in the development of diseaseand disability. A consideration of social isolation usually occurs in the contextof social support, and both concepts are often used interchangeably. Clearly, many simple interventions can have a broad, positive impact on the health of the elderly. Yet despite advances made in clinical research PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING206About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
DISABILITY FROM CHRONIC MENTAL DISORDER The causes of most of the serious mental disorders are not well understood. Substantial evidence suggests, however, that secondary conditions associated with these disorders can be prevented or at least reduced in severity through appropriate management and rehabilitation efforts. Appropriate medication and aggressive community treatment have been shown to limit the severity of limitations associated with major disorders, improve social functioning, and enhance the quality of patients'lives (Mechanic, 1989). Many of the conditions affecting motivation, behavior, and social participation seen among the mentally ill result from poor medication management, impoverished environments, social isolation, neglect, and homelessness. There is broad neglect of patients with mental illness at all levels of our health care system (Mechanic and Aiken, 1987). Patients with depression often go unrecognized and receive no treatment, resulting in needless disability. People with depression, however, typically respond favorably to treatment. Failure to recognize depression and provide treatment may result in alcohol and drug abuse, suicide, workabsenteeism, and family disruption. Even in the case of schizophrenia, one of the most disabling mental illnesses, recent research suggests hopeful prognoses (Harding et al., 1987). Aggressive, sustained treatment can prevent deterioration, allowing many patients to lead constructive lives. Assertive community care has been demonstrated to promote function and make reasonable levels of social participation and satisfaction possible (Stein and Test, 1985). Fourteen studies, most with random assignment, show thatorganized alternatives to hospitalization result in superior outcomes across a range of patient populations (Kiesler and Sibulkin, 1987). Patients with chronic schizophrenic symptoms are commonly neglected, which may exacerbate their symptoms and lead to a variety of secondary conditions, including sometimes violent acting-out behavior, social isolation, withdrawal from everyday activities, malnutrition, substance abuse, imprisonment, and homelessness. A recent IOM reportfound that the proportion of homeless populations with an acknowledged history of prior psychiatric hospitalization ranged from 11. 2 percent to 26 percent (Institute of Medicine, 1988a). Many more of the homeless without such a history suffer from serious mental disorders as well. The lack of adequate housing constitutes one of the most significant barriers to implementing appropriate mental health care, contributing to a continuing cycle of neglect and disability. Responsibility for the services necessary to prevent disability and secondary conditions among the mentally ill is distributed among a variety of categorical agencies at several levels of government and in the private sector. These programs suffer from fragmentation, lack of coordination, and large gaps in essential service components. It has been demonstrated repeatedly that the seriously mentally ill often require not only medical and psychiatric PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING207About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
treatment but also assistance in obtaining welfare benefits, help in structuring daily activities, psychosocial education, vocationalrehabilitation, and housing. Delivering such services requires a point of focused responsibility and accountability on a continuing basis, and the ability to direct funding to ensure that patients receive the care they need. An example of this type of service delivery is the Training in Community Living Model developed in Madison, Wisconsin, and adopted in other localities (Stein and Test, 1980a, 1980b, 1985). In most communities, however, responsibility and authority for mental health rehabilitation arediffused across many agencies, and many patients suffer from neglect and inappropriate care. and efforts to disseminate these results through consensus guidelines for preventive services, the standard practice of clinical medicine is slow to changeand incorporate these approaches. Because of the complexity of chronicdiseases and their interactions, optimal treatments that will lead to the highestlevels of quality of life and functional outcome are not well standardized and evaluated. Both standardized protocols for the management of chronic diseases and mental disorders, and guidelines for preventive services need to be developed and widely disseminated with the goal of preventing disability. The increased life expectancy for persons with developmental disabilities, chronic diseases, or injury-related conditions, for example, mandates an emphasis on their inclusion in the national disabilities prevention program. For example, while most persons with Down syndrome used to die before age 40only two decades ago, many now live into their sixties and seventies. Theseindividuals have both social (residential, work, retirement) needs as well ashealth needs. Additional study is needed of the relationship between chronic disease, disability, and aging in terms of health promotion, quality of life, and access to services. Such study should include issues related to age-related disability, as well as aging with a disability. Composition and Organization of Services The preceding discussion described some of the promising avenues leading to the goal of disability prevention among the elderly and among youngerpeople with chronic disease. By themselves, however, individual preventivestrategies —whether in health care or in social services —are not likely PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING208About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
to accomplish much. As in other areas of disability prevention, success will depend on the whole of the effort —on the composition of services, on the availability and organization of services, on the contributions of formal andinformal caregivers, and on much, much more. Thus the execution andintegration of services are as important as the composition of the particularrange of services provided. This is not meant to minimize the importance of individual service elements. For most people, the range of available preventive services isdeficient. For example, accumulating research evidence clearly demonstratesthe significant impact that mental health has on functional status and on qualityof life. Yet mental health services are not available to many people, or the typesof services that are available are inconsistent with their needs because of insurance restrictions or other factors. Similarly, many of the environmental modifications known to reduce the risk of falls and other injuries in the home donot qualify for reimbursement. More examples could be cited, but each has acommon thread. Most of the needs of people with chronic disease fall outsidethe scope of a health care system oriented to the treatment of acute conditions. Even with diagnostic-related groups, the Medicare system favors acute care treatment in hospitals. As Patricia P. Barry of the University of Miami School of Medicine has explained, "[P]rimary care practitioners struggle toreceive adequate reimbursement for lengthy home visits, assessment, familycounseling, and multidisciplinary teamwork, while their technologicallyoriented colleagues have no problem collecting for radiologic or laboratorystudies, or invasive tests that may not only be uncomfortable but also pose risks to the patient" (Institute of Medicine, 1989b). Today, much of the gap between needs and available services is being filled by informal caregivers. The committee recognizes the importance ofpersonal responsibility in health care and of the contributions of family andfriends in the provision of needed services; however, it also recognizes thedangers of abdicating total responsibility for care to individuals and informalcaregivers, a situation that can result from current reimbursement systems thatprovide no other option. The 1982 Long-Term Care Survey showed that approximately 2. 2 million caregivers (age 14 or older) provided unpaid assistance to 1. 6 million elderlypeople who required help with one or more basic life activities. The average ageof the informal caregiver is 57; a quarter of these caregivers are between theages of 65 and 74, and 10 percent are older than 75. Many of these caregiversmake substantial commitments, which often preclude employment and reducethe time available for other responsibilities. Indeed, 80 percent of informal caregivers devote at least 4 hours a day, 7 days a week, to providing assistance (Stone et al., 1987). Because of the post-World War II baby boom, the number of offspring available to provide care to parents will increase, but so will the number of PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING209About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
elderly. The ratio of people older than age 80 to children will peak in the year 2000, decline somewhat over the next two decades, and then soar to an evenhigher peak in the year 2030 (Institute of Medicine, 1989b). These predicted trends and the mismatch between today's health and social service system and the needs of the elderly and of younger adults with chronicdisease and disabling conditions should compel policymakers and serviceplanners and providers to rethink current approaches to care. Driven byconcerns about escalating expenditures, such a reappraisal is taking place, buttoo little attention is being paid to access to care and, in particular, to quality of care. As a result, changes implemented in the name of controlling costs are generating new issues in their aftermath. Health care practitioners, noting thatthe average hospital stay in the United States is shorter than in any other nation,complain that patients are being discharged from hospitals not only quicker butalso sicker, although research on this issue has produced equivocal results. Alsomotivated largely by cost concerns, many people are placing greater emphasison home and community care as an alternative to institutionalization. Althoughthis shift is often viewed positively, lack of standards for home care, questionsabout the competency of providers, restrictions on reimbursement for services,and other concerns suggest considerable variability in the effectiveness of thisapproach. Robert L. Kane contends that many of these new issues and problems are the product of an "alternatives mentality" (Institute of Medicine, 1989b). Homeand community care, for example, has been advanced as a means of keeping theelderly and chronically ill out of nursing homes, but other than the goal ofavoiding institutionalization, objectives have not been established forcommunity care. "We have not addressed more fundamental questions," Kanemaintains, "such as, Is community care a legitimate and important vehicle for providing care on a long-term basis" (Institute of Medicine, 1989b). Moreover, if avoiding institutionalization is the sole aim, then attention is distracted fromimproving the quality of care in nursing homes, which will continue to beneeded. If social and health care issues related to disability and its antecedent conditions are not addressed coherently at the policy level, it should not besurprising that current approaches to prevention lack necessarycomprehensiveness, continuity, and coordination. An essential first step towardachieving the requisite "3 C's" is to redefine the standard by which we judge ourefforts. Quality of life, not just physical functioning, should guide the design, organization, and integration of services. Although quality of life is a subjective concept, valid measures exist for assessing many of its components, including physical, cognitive, psychological, and social functioning. By broadening our attention to embrace all of thesedeterminants of individual well-being, we are more likely to PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING210About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
develop service delivery systems that prevent needless impairment and disability. Overcoming the fragmentation, lack of coordination, and large gaps in essential service components that now characterize health care and socialservice programs will not be easy. However, effective delivery of servicesrequires a focal point of continuing responsibility and accountability. It alsorequires freeing up funding from overly restrictive and overly rigidreimbursement schemes so that the particular service needs of individuals canbe accommodated. For insurers and other third-party payers, this willnecessitate determining how to work with providers of social support services and other services that are now excluded from the traditional medical model upon which most insurance coverage is based. Thus it seems obvious that new funding arrangements are needed, as are new relationships among service providers. It is not clear what forms these newarrangements and relationships should take, although several models probablywill be needed. Primary care providers, public health agencies, private insurers, voluntary associations, and community organizations should undertake the development and evaluation of collaborative demonstration projects that aredesigned to provide comprehensive, coordinated disability prevention programs. Interventions should focus on individual needs, with the goal of improving quality of life and physical, mental, and social well-being. Education Stereotypes are slow to die. In the area of disability prevention, however, clinging to outdated service delivery models and to disproved notions about thechronically ill and the elderly makes the prospects for progress quite poor. Newthinking is required, and this can be achieved only through public and professional education. More must be done in schools and in the home to instill in the young the importance of healthful behaviors. Health promotion, however, is relevant to allstages of life, and the themes are often the same (e. g., regular exercise, properdiet, avoidance of substance abuse, and injury prevention). Reinforcingmessages in the community, the school, the workplace, and the physician's office can help create a social context that promotes healthful lifestyles. The change in public attitudes toward cigarette smoking clearly demonstrates thatsuch constant reinforcement can have a positive impact on individuals, resultingin benefits for all of society. Public attitudes toward the aging process have fostered an unduly pessimistic PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING211About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
view of the late stages of adulthood. Attention has focused on the health risks associated with aging. It would be far more constructive for society toconcentrate on preventable extrinsic factors that underlie these increasing healthrisks. The public must be made aware of the potential for modifying the agingprocess and of the physical, psychological, environmental, and socialdeterminants of the quality of life in late adulthood. The thrust of educational programs for health care and social service professionals should be similar with regard to disabling conditions. However,medical education and training continue to emphasize the diagnosis andtreatment of acute diseases. Consequently, treatment is usually fixed on theshort term, whereas the needs of people with chronic disease and of the elderlyare long term, and rates of cure and survival are the primary gauges of the success of therapeutic interventions. Moreover, underappreciation of other aspects of personal well-being and of the contribution of psychological, social,and economic variables to health status can result in inappropriate care. As aconsequence, high-technology medicine tends to be favored even when low-tech services are likely to be more beneficial, and providers of health care andsocial services operate in isolation rather than as multidisciplinary teams. The potential exists for modifying the quality of life associated with aging and chronic disease processes through individual lifestyle change and throughsocial policies that ensure adequate income, educational opportunities, andsocial support across a person's life course. Broader measures that are morerelevant for the individual, such as functional limitation and quality of life, arenot integrated into professional education programs. In addition, health financing systems do not reward counseling, chronic disease management, and preventive measures in clinical practice. Professional education should foster a quality-of-life perspective, one that does not treat all needs as medical in nature. Geriatric assessments provide a useful model that should be incorporated into the training of all health care professionals. Such assessments evaluate a patient's total situation, considering a broad range of functional abilities and analyzing theavailability of social support. On the basis of this type of comprehensive appraisal, a physician, nurse, or social worker can determine the elements of a comprehensive long-termprogram of care. For many elements, several options are possible, and most are likely to qualify as low technology. In addition, geriatric assessments have a follow-up component that fosters continuity. Finally, while integration and continuity imply complexity, new information technologies offer opportunities to simplify case management andensure coordination. Lap-top computers and bar code readers, for example, canbe used to create patient data bases that provide a continuing record of PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING212About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
the administration of medications, the type of services received, and other information relevant to the care and well-being of individuals. In addition,information technologies should make more accessible the guidelines forpreventive services and clinical protocols that are emerging from ongoingresearch on the effectiveness and outcomes of interventions. If this informationwere compiled in easy-to-use data bases, adoption of these consensus guidelines and protocols by health care professionals would be accelerated. PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING213About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
7 Prevention of Secondary Conditions Traditionally, rehabilitation has been viewed as the major type of health care intervention for people with disabling conditions, with recovery of function as the sole aim of treatment. A consequence of this perspective is that disabling conditions are categorized as static entities (Marge, 1988). One commonly heldview is that once recovery reaches a plateau and treatment ceases, the personwith a disabling condition is likely to remain permanently at this level of healthstatus and functioning. This long-held view fails to recognize the true nature of disabling conditions: they are long-term, dynamic conditions that can fluctuate in severity during the life course. Moreover, people with disabling conditions oftendevelop additional conditions that are causally related to the primary disablingcondition and that may be more debilitating. Much of the literature refers tothese conditions as secondary disabilities . In the interest of conceptual clarity, however, the committee has adopted the term secondary conditions because many of the conditions that occur are not disabilities per se but pathologies,impairments, and functional limitations. Thus a secondary condition is a condition that is causally related to a disabling condition (i. e., occurs as a resultof the primary disabling condition) and that can be either a pathology, animpairment, a functional limitation, or an additional disability. The existence of a potentially disabling (primary) condition is a strong risk factor for certain secondary conditions; by definition, the secondary condition would not occur in the absence of the primary condition. This causalrelationship between primary and secondary conditions lends itself topreventive interventions that are designed to reduce the risk of developingsecondary conditions and the concomitant potential for additional deteriorationin health status and quality of life. PREVENTION OF SECONDARY CONDITIONS 214About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
According to Marge (1988), among the most commonly reported secondary conditions are pressure sores, contractures, urinary tract infections,and depression ( Table 7-1 ), each of which can cause additional impairment, functional limitation, and disability. Specific examples of the relationshipbetween a primary disabling condition and resultant secondary conditionsinclude decubitus ulcers and contractures that develop because of lack of movement in a person with paraplegia, and depression that develops as a result of spinal cord injury. Health promotion and amelioration of the primary disabling condition — the traditional aim of rehabilitation —are the principal strategies for minimizing the risk of a secondary condition. Because the presence of a disabling conditionand, consequently, vulnerability to secondary conditions are lifelong,approaches to prevention should focus on the long term and the whole person. Critical elements of interventions include regular monitoring of health status,continuity of care, availability of appropriate assistive technology, training in coping with limitations, and community support including measures that ensure access to transportation, housing, and opportunities for employment. MODEL OF SECONDARY CONDITIONS All primary disabling conditions entail increased vulnerability to secondary conditions that can arise in many ways. A model of the process thatleads to a secondary condition is depicted in Figure 7-1. Added to the nexus of interactive risk factors in the previously described model of the disablingprocess ( Figure 3-3 ) is the existence of a primary disabling condition. Collectively, the presence of risk factors predisposes a person to a progressionthat begins with a new, or secondary, pathology and that can end with additional disability. Thus opportunities to intervene exist at several stages. The committee has defined the relationship between the primary disabling condition and a secondary condition as a causal one; the secondary conditionwould not occur without the existence of the primary condition. However, thecausal relationship can be either direct or indirect. The common example of adirect etiological relationship is the development of pressure sores in personswho use wheelchairs and are limited in activity as a result of spinal cord injury. An example of an indirect relationship is that of a disabling condition thatcauses new stresses —uncertainty about the future, changes in living environments and social relationships, and frustrations from being unable to gain access to a building —that in turn can cause hypertension or other stress-related diseases. In addition, disabling conditions can magnify the influence ofother existing risk factors. Continuation of smoking, heavy drinking, poordietary habits, and other deleterious behaviors greatly increases the likelihoodthat a secondary condition will develop. PREVENTION OF SECONDARY CONDITIONS 215About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 7-1 Causes of Some Common Secondary Conditions Secondary Condition Causes Decubitus ulcers Inaccessibility to adequate health care, improper seating for those with the disuse syndrome, lack of continuous personal hygiene. Genitourinary tract disorders Inaccessibility to adequate health care, genetic disorders, alcohol and drug abuse, nutritional disorders, lack of personal hygiene, acute and chronic illness. Cardiovascular disorders Alcohol and drug abuse, tobacco use, nutritional disorders, stress, inaccessibility to adequate health care, acute and chronic illness, lack of physical fitness. Stroke Lack of physical fitness, nutritional disorders, tobacco use, stress, alcohol and drug abuse, inaccessibility to adequate health care (hypertension control). Musculoskeletal problems Lack of physical fitness, injuries, stress, genetic disorders, perinatal complications, acute and chronic illness, inaccessibility to adequate health care. Arthritis Speculated lack of physical fitness, nutritional disorders, stress and possibly genetic disorder. Respiratory problems Lack of physical fitness, acute and chronic illness, environmental quality problems, alcohol and drug problems, tobacco use, unsanitary livingconditions, genetic disorders. Hearing loss Genetic disorders, acute and chronic illness, injuries, violence, environmental quality problems (noise pollution). Speech and language problems Genetic disorders, acute and chronic illness, injuries, environmental quality problems, neurological deficits (such as strokes), cancer and respiratory problems. Vision problems Genetic disorders, acute and chronic illness, injuries, violence, nutritional disorders, environmental quality problems, inaccessibility to adequate health care. Emotional problems Genetic disorders, stress, alcohol and drug abuse, deleterious child-rearing practices and familial-cultural beliefs; inaccessibility to adequate mental health care. Skin disorders Genetic disorders, acute and chronic illness, injuries (fires and burns), nutritional disorders, unsanitary living conditions, stress. SOURCE: Adapted from Marge, 1988. PREVENTION OF SECONDARY CONDITIONS 216About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
FIGURE 7-1 Model of secondary conditions. Note the addition of the ''primary disabling condition" as an additional risk factor. By definition, a "primarycondition" is a risk factor for the secondary condition. This model shows that a secondary condition can be anything from a pathology to a disability. It also allows for interaction between the primary and the secondary conditions. PREVENTION OF SECONDARY CONDITIONS 217About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
It is important to note that the existing disabling condition and other risk factors work in combination, and that secondary conditions can have manyconsequences. The example of J. R., described in the first box, illustrates someof the feedback loops involved in the development of secondary conditions thatinfluence the nature and severity of the condition's effects. J. R. 's experienceclearly demonstrates the importance of the life course perspective on longitudinal health care, as well as the significant role played by nonmedical factors. Surveillance and Epidemiological Understanding Although clinical experience has generated a long list of secondary conditions that frequently occur in people with disabling conditions,epidemiological information on the incidence and prevalence of secondaryconditions and on the underlying causative factors is sparse. Thisepidemiological blind spot is emblematic of existing data systems that do notcontain information about the causes of the specific disabling conditions. Thusit is extremely difficult to determine to what extent a person's disability is the result of primary or of secondary conditions. A partial exception is the National Health Interview Survey (NHIS), which asks respondents with disabling conditions to list the main cause of theirdisabling condition, as well as of other conditions that may be involved. Inaddition, the NHIS collects information on the onset of conditions in thesepeople. But because this information on the timing of onset is very general, it isoften impossible to determine the order in which the conditions occurred, andthe distinction between primary and secondary conditions can rarely be made. La Plante (1989b) analyzed NHIS data to determine the frequency of co-occurrence for 22 conditions or groups of conditions. A variety of conditionswere found to co-occur more frequently than expected, indicating a possiblecausal relationship. For example, the prevalence of hypertension and asthmaamong people with disabling conditions was 2. 63 per 1,000 persons —more than four times the expected rate. La Plante notes that NHIS data can also be used toascertain the extent of activity limitation associated with co-occurring conditions, but adds that "understanding of the causal models underlying statistically dependent conditions must come from other sources of information. " The true magnitude of secondary conditions is not known, but several studies suggest that it is large. For example, about 40 percent of all people withactivity limitation report multiple conditions as the cause of limitation. Asdiscussed in a previous chapter, the prevalence of multiple conditions amongpeople with activity limitation has been increasing. But, again, the factorscontributing to this increase cannot be determined with existing data. Thisincrease may include a rising rate of secondary conditions, but it PREVENTION OF SECONDARY CONDITIONS 218About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
J. R. is a 29-year-old man who became quadriplegic from a spinal cord injury sustained after an automobile crash five years ago. He hasfunction only at the level of C5 and above. Therefore, he has no effective use of his hands or his body below shoulder level. In addition, he has sensation in the skin only over the head, neck, upper shoulders, and outside arms. Following his initial injury he was hospitalized for 9 months, receiving comprehensive rehabilitative care. During the next 4+ years since his discharge from the rehabilitation hospital, several problems occurred that reduced his independence and his quality of life. During the first two years after discharge, his bladder periodically became infected which led to two-to three-week periods of high temperatures, marked fatigability, and inability to function at his best level. These infections were caused by a catheter that was inserted during his stay in a nursing home immediately after his discharge from the rehabilitation hospital. However, living now with an attendant in an apartment and utilizing intermittent catheterization for control of hisbladder, J. R. has had only one minor infection during the last two years. While in the nursing home, J. R. developed pressure sores over the ischial tuberosities (from sitting in a chair that had no mechanism for pressure relief). At the time, he had difficulty in getting funding for a power recline chair and thus sat for long periods in a standard high-backedwheelchair with a standard cushion, which was not sufficient to keep him from developing ischial pressure sores. As a result of these pressure sores, he was admitted to an acute hospital for two weeks and subsequently referred back to the nursing home. For a period of eight weeks, he was not able to sit up in a chair but rather had to move fromplace to place on a cart in order to avoid pressure over the healing sores. Because of his continued dependency in the nursing home and the unavailability of privacy or people of his own age in the institution, J. R. became depressed for approximately four months. During this period he contributed little to his own self-care, had no interest in developing either vocational or recreational activities, and tended to alienate those about him because of his passivity. He was so inactive for a while that he developed thrombophlebitis of the deep femoral veins. Treating thiscondition required surgery to place a device in his inferior vena cava that would prevent migration of clots to the lungs; otherwise, sudden death from pulmonary embolism might occur. At the time of his discharge from the rehabilitation hospital, J. R. had spasticity that primarily involved the lower extremities but that did not substantially interfere with his activities. However, he subsequently developed increased tightness and episodes of "jumping" of the legs that made his balance in the wheelchair precarious and interfered with hissleep at night. More recently, with a regular program of stretching, control of his bowel and bladder functions, and adequate positioning when sitting up in his chair and when lying in bed, he has had little functional problem with the continued spasticity in his lower extremities. PREVENTION OF SECONDARY CONDITIONS 219About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
J. R. quickly depleted all of his financial resources and was dependent on Medicaid for payment of his health services for the first three and a halfyears after his injury. At two years after his injury, his medical expenses were supplemented through Medicare. He also was placed on Social Security six months after his injury because he had worked regularly prior to his injury. Initially, J. R. was also dependent on public housing assistance (Section 8) and waited three and a half years for an appropriate apartmentwith adequate accessibility (resulting in the prolonged stay in the nursing home). Prior to his injury, J. R. had been a drafting technician. After his injury, J. R. developed the capability of working in an adapted work station as a receptionist in an architectural firm. However, he found the income fromthis position to be too high to retain his eligibility for Social Security, Medicare, and Medicaid and yet not sufficient to cover the costs of his medical transportation and attendant care needs. As a result, he was unable to continue working even though he found significant satisfaction from it. could also reflect an increase in independent conditions or be the result of other factors, such as increased access to health services and improved healthawareness. The paucity of data also limits the ability to accurately estimate the economic costs associated with secondary conditions and, therefore, thepotential savings that can be achieved with effective interventions. Advocates of people with disabling conditions and clinicians who treat them generally agree that the associated costs are substantial, and that significant savings canbe achieved with consistent, appropriate programs of medical care,rehabilitation, and social support. An example is suggestive of the potential savings. The Committee on Trauma Research (National Research Council, 1985) reported that 35 percent to 40 percent of the estimated 200,000 people with spinal cord injury develop pressure sores of varying severity. Because the average cumulative cost perpressure sore is an estimated $58,000 (National Institute on Disability and Rehabilitation Research, 1990), the savings from preventing this avoidablesecondary condition are likely to be large. A disability surveillance system is needed to collect data on the incidence and prevalence of secondary conditions, including psychiatric conditions. These data are needed to improve understanding of risk factors associated with secondary conditions and to guide development of effective interventionstrategies for preventing secondary conditions. PREVENTION OF SECONDARY CONDITIONS 220About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Mental Health Conditions Potentially debilitating illness or injury elicits psychological and behavioral responses that are peculiar to each individual. Despite the diversityof responses, the stresses and other forces that persons with disabling conditionsmust confront are often quite similar. The two examples given in the secondbox are illustrative. The similarities between the two patients are striking; yetthe first patient appears to be adapting positively, whereas the second patient exhibits symptoms of major depressive disorder. The second patient's psychological state underlies his failure to comply with his prescribed dietaryand exercise regimen, which elevates the risk of developing a secondarycondition. The finding by Wells and colleagues (1989) that "depression and chronic medical conditions had unique and additive effects on patient dysfunctioning" isespecially pertinent to the care of people with disabling conditions. Depressionfollowing the loss of function is common and usually treatable. Krueger (1981)describes depression as a normal and expected response. "If it does not occur, even transiently," Krueger advises, "an alarm should sound because its absence indicates the reality of the loss has not been emotionally recognized. " Prolongeddepression is not inherent, and in most patients it abates within weeks or monthswithout intervention. Careful psychiatric monitoring can alert the physician tothe danger of prolonged depression, permitting early intervention. Krueger also points out that the more a person's disabling condition interferes with his or her work, recreation, self-esteem, or normal copingmechanisms, the more psychologically devastating the condition will be. Whilefinding that there is no characteristic pattern of psychological response based on type of disabling condition, Gallagher and Stewart (1987) report that anger, depression, and anxiety increase with the severity of the disabling condition. Researchers (Gallagher and Stewart, 1987; Castelnuovo-Tedesco, 1981) alsohave found that the severity of the psychological response is inversely related tothe age at which the disabling condition is acquired. In terms of psychologicalvulnerability, according to Castelnuovo-Tedesco, the least unfavorable time fora disabling condition to develop tends to be after stable adult integration hasoccurred. A person's mental health prior to the onset of a disabling condition and other antecedent variables appears to influence the likelihood and intensity ofpsychological complications. Factors predictive of depression followingphysical illness or injury include a personal history of depression, a family history of depression, and a predisposition to depression based on a personal history of early parental loss or childhood trauma (Krueger, 1981). Brodsky's (1987) examination of motivational issues in a population of people who sustained job-related injuries elucidated several nonmedical factors PREVENTION OF SECONDARY CONDITIONS 221About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
that play significant roles in the occurrence of work disabilities. One such factor is the degree to which an individual has been socialized for work and thus thedegree to which personal worth and success are defined in the context of one'soccupation. Similarly, level of educational attainment is also related to the riskof work disability. Brodsky maintains that with increasing educationalattainment comes a greater belief in the intrinsic rewards of work, a greater likelihood of extrinsic rewards derived from work, and a more intellectually rewarding content of work. Patient 1 is a 44-year-old white, Protestant, married physician who is the father of three teenage children and suffers an occlusion of theanterior descending coronary artery. After three weeks in the hospital, he returns home on a regimen of aspirin, a low-cholesterol diet, and a systematic exercise program. When his cardiologist sees him for a follow-up visit after two months, the patient has returned to his medical practice and reports that he has lost 7 lbs. In addition, the patient describes the resumption of his sexual life, his usual parenting activities, and leisure time pursuits. While still somewhat anxious about his prognosis, herequires no psychiatric intervention or psychotropic medication. Patient 2 is another 44-year-old white, Protestant, married physician who is the father of three and who suffers an occlusion identical to that of Patient 1. After three weeks in the hospital, he also returns home on a regimen of aspirin, a low-cholesterol diet, and a systematic exercise program. However, when his cardiologist sees him for a follow-up visit,after two months, Patient 2 and his wife report that he constantly feels tired, stays in bed, avoids exercise including sex, and has made sporadic visits to his office but has not seen patients. On interview, the patient reports being terrified of a fatal recurrence of the myocardial infarction. In addition, he is having difficulty sleeping, eats sporadically but not in accord with his diet, can't enjoy sex and other pleasurable activities, and feels that his active life is over and that he is "no longer a man. " Althoughthere is no difference between the cardiac status of Patients 1 and 2, four months later Patient 2 is still unable to return to work and his family life is colored by his inability to resume his functions as an effective father and husband. Some of the workers in the Brodsky study who developed disability perceived themselves prior to injury as physically, emotionally, or intellectuallyinadequate, a perception underlain by a variety of factors including those related to age, job-personality fit, and family relationships. For these individuals, disability is a more likely outcome than for those who do not feel inadequate onthe job. The nature of the work performed also influences the outcome of work-related injury: low pay, boring and repetitive work, and heavy physical PREVENTION OF SECONDARY CONDITIONS 222About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
labor are associated with increased disability. Lack of on-the-job autonomy, adversarial employee-employer relationships, poor communication, anddiscrimination were all found by Brodsky to increase the chances that disabilitywould result from work-related injury. More research is needed to identify risk factors for secondary mental health conditions, clarify the role of these factors in contributing to additional disability, and develop effective interventions to prevent secondarypsychiatric conditions. Research should include evaluations of the interactions and contributions of biological and psychodynamic factors such as perceptions of the significance and meaning of disability; the availability of familial, social, and cultural support; and perceived prospects for personally gratifying future activity. COMPONENTS OF A COMPREHENSIVE PREVENTION PROGRAM People with disabling conditions and those who treat these conditions generally believe that the techniques used to minimize the physical,psychological, and social effects of primary disabling conditions also arebeneficial in the prevention of secondary conditions. This consensus is largelythe product of intuition rather than rigorous scientific evaluation ofinterventions. Nevertheless, since secondary conditions are often predictable,they also should be preventable. There is a paucity of empirical evidence on the effectiveness of preventive approaches for at least two reasons. First, the lack of valid, reliable assessmentsfor determining what works and what does not work extends to virtually allareas of health care, not just disability. Second, the widely held view thatdisabling conditions are unchanging, static (or worse, inevitably deteriorating)conditions has limited the amount of attention devoted to prevention ofsecondary conditions. Limits to our knowledge mean that, at least in the short term, efforts to prevent secondary conditions will be developed largely on a trial-and-errorbasis. However, the committee believes that service providers and people withdisabling conditions can increase the probability of success in preventingsecondary conditions by adhering to some fundamental principles. For example,practices that promote general well-being and good health are as critical to people with disabling conditions as they are to those who are free of limitations. In fact, available evidence suggests that health-promoting behaviors may bemore important to the population of people with disabling conditions, giventheir elevated risk for secondary conditions and, consequently, for negativeeffects on the quality of their lives. In addition, service providers also shouldstrive to deliver services that are comprehensive and PREVENTION OF SECONDARY CONDITIONS 223About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
integrated. Obviously, the mix of services is contingent upon levels of available public, private, and personal resources. Nonetheless, the effectiveness of eachelement within a particular set of services is enhanced if the elements arecomprehensive, well coordinated, and integrated from the perspective of theclient. In general, the prevention of secondary conditions in people with disabling conditions requires a comprehensive approach that includes at least thefollowing components: (1) organization and delivery of services; (2) availabilityof appropriate assistive technologies, as well as adequate training in the use ofthese technologies; (3) adoption of health-promoting behaviors; (4) education;and (5) consideration of environmental factors. The following sections discussthese components as they relate to the development of effective intervention strategies for the prevention of secondary conditions. Organization and Delivery of Services Preceding chapters have discussed the incongruity that characterizes the current patchwork of public and private health care and social services forpeople with disabling conditions. Services are compartmentalized and poorlycoordinated, whereas the needs of people with disabling conditions areoverlapping and long term. Even if the full spectrum of needed services areavailable, it is unlikely that services will be well integrated and easilyaccessible. More than half of the respondents in a 1986 survey of Americanswith disabling conditions said it was "somewhat hard," "very hard," or "almost impossible" to identify available services (Louis Harris and Associates, 1986). Because of the service system's fragmented organization and its emphasis on acute conditions, many people with disabling conditions are underserved andlittle attention is focused on prevention. One consequence is the occurrence ofavoidable secondary conditions that worsen a disabling condition and increasethe need for services. Observers of the U. S. health care system often note that form follows funding. That is, funding policies directly determine the makeup of availableservices. Current funding policies, however, do not reflect the needs of peoplewith disabling conditions; therefore, available services often do not provide theappropriate types and levels of care. Programs for income maintenance,rehabilitation, health care, and independent living are governed by their ownseparate policies rather than by an encompassing, unified disability policy. Funding for health care and social services should follow client needs. But the needs of people with disabling conditions are diverse, and theirrequirements for services are equally diverse. Although a range of servicesshould be available, not every person with a disabling condition will require allof these services. Thus funding of the health care and social service PREVENTION OF SECONDARY CONDITIONS 224About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
system must permit flexibility at the community level. The community is the appropriate site for making decisions on what services an individual needs andhow best to provide them. Independent living centers are discussed below as anexample of effective community-based programs that assist people withdisabling conditions. Independent Living Centers Independent living centers provide one model of how to address the multiple needs of people with disabling conditions. These community-basedcenters, which usually are staffed by persons with disabling conditions who liveindependently, offer a variety of services and act as resource and referralcenters, achieving linkages among the disparate elements of the health care andsocial service system. Services offered by independent living centers typically include the following: organizing and coordinating family support for people with disabling conditions; organizing coalitions among people with different types of disabling conditions; peer counseling; long-term monitoring and follow-up of referred clients; computerized information and referral system; health maintenance programs, often developed in conjunction with local rehabilitation centers; transportation; housing assistance; and advocacy, including participation in the development of policies that foster integration of people with disabling conditions into thecommunity. Collectively, these services and activities constitute a comprehensive, rational approach to the prevention of secondary conditions, addressing not onlyhealth concerns but also issues related to the quality of life. Indeed, the aim ofthe independent-living movement —to foster "control over one's life based on the choice of acceptable options that minimize reliance on others in makingdecisions and in performing everyday activities" (Texas Institute for Rehabilitation and Research, 1978) —is an appropriate goal for guiding the development, organization, and coordination of disability prevention programs. Assistive Technologies Assistive technologies are devices and techniques that can eliminate, ameliorate, or compensate for functional limitations. Essentially enabling tools,assistive technologies help people with disabling conditions interact PREVENTION OF SECONDARY CONDITIONS 225About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
more efficiently and more effectively with the social and physical elements of their environment. Assistive technologies encompass a broad range of devices. Some incorporate the most advanced offerings of high technology, but the greatmajority of assistive devices are "off-the-shelf" products that can be used withlittle or no modification. A microwave oven, for example, may allow a personwho is limited in movement to cook, whereas an electric or gas stove may not. At the high end of the technology range (and still under development) are voice-activated robotic arms that can prepare a meal and assist individuals inperforming a variety of basic activities such as feeding, tooth brushing, facewashing, and hair combing. By helping people to interact more fully with their environment, assistive technologies can improve or at least maintain functional capacity, and byfostering greater control over one's activities, assistive technologies fosterautonomy, which often translates into a higher quality of life. In turn, thesebenefits spawn the additional advantage of reducing the risk of secondary conditions. There are three categories of assistive technology: (1) personal technologies, such as tools used in grooming and other hygienic tasks, exercise,and skin protection; (2) activity-specific technologies such as writing and othercommunication aids and equipment that enable participation in recreational orwork-related activities; and (3) environmental technologies, primarily those that ensure physical access (e. g., curb cuts and building ramps) and also those that offer opportunity for participation in societal affairs (e. g., closed-captionprogramming and specially adapted telephones that allow people to converse bytyping and reading). Many assistive technologies directly or indirectly reducethe risk of injury. Grab bars and nonslip bathtubs, for example, greatly reducethe risk of injury in the bathroom, and curb cuts and ramps not only help peoplewith disabling conditions but also assist those carrying heavy objects or pushingstrollers. Advances in electronics and the associated miniaturization of devices open the door to exciting opportunities for developing highly useful assistivetechnologies. Perhaps the most interesting avenues lie in the area of implantabledevices that can substitute for damaged body parts. Yet despite the sizable benefits to be reaped by applying today's high technology to the needs of people with disabling conditions, many manufacturers of medical devices are scalingback their investments in research and development because of governmentregulations on the pricing of devices (National Academy of Engineering, 1988). Although complex applications of cutting-edge technology attract most of the public's attention, the greatest benefits, at least in the short term, are likelyto come from applying "low technology" to the needs of people with disablingconditions. Such simple devices as adaptive eating implements for people withmanual limitations cost only a few dollars, but they can PREVENTION OF SECONDARY CONDITIONS 226About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
contribute significantly to personal independence. This is not to suggest that advanced technology is not appropriate for people with disabling conditions. Inmany instances, it can be. But the innovative adaptation of readily availablecommercial products has the advantage of costing less than the development ofproducts solely for the population of people with disabling conditions. Applying commercially available technology to the needs of people with disabling conditions would seem to be a relatively straightforward exercise intechnology transfer. Unfortunately, a major impediment exists in the form ofthe reimbursement criteria of public and private insurers. Tailored to thetreatment of acute conditions, reimbursement criteria emphasize curativemedicine and rarely recognize the importance of maintaining health andimproving functioning. Thus most assistive technologies, which are tools of preventive care, do not qualify for reimbursement. Medicare, the public insurance program for the elderly and people with disabling conditions, uses a standard of ''medical necessity" that has beenadopted by most private insurers. Assessed by this standard, assistivetechnologies are likely to be dismissed as "not primarily medical in nature" oras "convenience items" ( Table 7-2 ). Thus coverage is often denied for equipment that can reduce the risk of secondary conditions, especially those thatarise from injuries. Denial of reimbursement for technology that assists in the performance of daily activities and reduces the risk of secondary conditions is likely to result inlong-term costs that exceed initial savings. For example, Medicare regards grabbars for bathrooms as convenience items, even though falls in the bathroom area leading cause of hip fractures and other injuries among the elderly. The healthcare costs associated with hip fractures alone are large and growing. Thisshortsightedness is also reflected in the inadequate coverage that most insurers provide for long-term maintenance and replacement of the few assistive technologies they do fund. The beneficial effects of assistive technologies in reducing and preventing disability and secondary conditions need to be recognized in determinations of medical insurance coverage, which should not be restricted on the basis of medical necessity or convenience. Similarly, the beneficial effects of personal assistance services and durable medical equipment need to berecognized for their effectiveness in preventing disability and secondary conditions. Health Promotion The concept and benefits of health promotion are the same for people with disabling conditions as for people without them, and both groups must PREVENTION OF SECONDARY CONDITIONS 227About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
assume general responsibility for their physical, psychological, and social well-being. However, disabling conditions often necessitate the development ofspecial skills and the availability of additional information and assistivetechnology in order to assume this responsibility. TABLE 7-2 Durable Medical Equipment that Assists in Preventing Secondary Conditions and the Reasons Given for Denying Coverage Under Medicare Item Reason for Denied Medical Coverage Bathtub lifts Convenience item; not primarily medical in nature Auto lift Convenience item; not primarily medical in nature Nolan bath chair Comfort or convenience item; hygienic equipment, not primarily medical in nature Cheney safety bath lift Convenience item; not primarily medical in nature Raised toilet seats Convenience item; hygienic equipment, not primarily medical in nature Bathtub seats Comfort or convenience item; hygienic equipment, not primarily medical in nature Grab bars Self-help device, not primarily medical in nature Safety grab bars Self-help device, not primarily medical in nature Disposable sheets and bags Nonreusable disposable supplies Incontinence pads Nonreusable supply; hygienic item Patient lifts Covered only if intermediary's physician determines patient's condition is such that periodic movement isnecessary to effect improvement or to arrest or retard deterioration in patient's condition Bed baths Hygienic equipment SOURCE: U. S. Health Care Financing Administration, 1983. Disabling conditions require adjustments and adaptations in many spheres of an individual's life. Changes in diet, for example, are often necessary becauseof an altered metabolism or the influences of prescribed medications. If theperson has a progressive condition, nutritional requirements may have to bereviewed regularly. Lifestyle behaviors must also be reviewed and changed inaccordance with the limitations imposed by the disabling condition. Behaviorsknown to be deleterious, such as smoking or abuse of alcohol and other drugs,should be eliminated. Training may be required in a number of areas. Personswith sensory limitations must be instructed on observing their bodies to detectirregularities and to accommodate biological needs. A person with spinal cordinjury, for example, must be taught to inspect his legs —visually and by touch — to detect skin conditions. A person with a disabling condition might need to be familiarized with PREVENTION OF SECONDARY CONDITIONS 228About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
alternative forms of exercise and recreation, schooled in the appropriate techniques, and provided with the necessary assistive technology. Training incoping skills and stress management is essential. For example, people withdisabling conditions can benefit from learning communication techniques forresponding to questions about their limitations and, if desired, for refocusing thediscussion. Nutrition, Exercise, and Medications People with disabling conditions must be thoroughly advised of their nutritional needs. If the disabling condition reduces a person's level of activity,for example, then their caloric requirements are also likely to be reduced. Moreover, medications can suppress or increase appetite, alter nutritionalbalance, or diminish energy and motivation, reducing one's desire to cook. Forexample, use of anticonvulsant drugs has been shown to reduce serum levels of vitamin D and several B-complex vitamins (Whitney and Cataldo, 1983). Thus people with disabling conditions must be fully apprised not only of theirnutritional needs but also of the name, dosage, timing of administration,purpose, side effects, and dietary restrictions for each medication they aretaking. Development of an appropriate diet is likely to require the combinedinput of physician, nutritionist, and pharmacist (Marge, 1988). Exercise is especially important for people with disabling conditions. Many disabling conditions limit the range of motion of joints, increasing therisk of contractures. Disabling conditions also may restrict mobility, thusreducing opportunities for strenuous physical exercise, which improves bloodcirculation. In addition, people with disabling conditions tend to gain weight asthey age. This excess weight further restricts mobility, often results in fewer weight shifts to relieve pressure on the skin, and increases the risk of abrasions and bruises during transfers. Regular exercise can have several risk-reducing benefits: it improves circulatory and pulmonary functioning, helps maintain normal blood pressure,decreases serum levels of cholesterol and low-density lipoproteins, helpsprevent obesity, helps improve strength and endurance, and helps delaydegenerative changes that can accompany aging (Brandon, 1985). Moreover,exercising extremities through their full range of motion and stretching allmuscle groups affecting each joint help to prevent contractures. People with physical limitations should engage in a program of aerobic exercise at least three times a week. Each session should include at least 15minutes of repetitive, continuous exercise. Setting up such an exercise programcan be a challenge, however. Options may be limited by lack of access to fitnesscenters or by the unavailability of required adaptive exercise equipment. The National Handicapped Sports and Recreation Association PREVENTION OF SECONDARY CONDITIONS 229About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
and several other organizations offer information on exercise and other health promotion activities for people with disabling conditions. Education and Information The definition of disability, as it is often used in U. S. society, is synonymous with dependency. The view that disabling conditions entail loss ofcontrol over one's affairs is pervasive not only among the general public butalso among health care and social service professionals. The paternalisticattitudes that stem from this stereotypical view are antithetical to what shouldbe the primary goal of prevention programs: to facilitate greater autonomyamong people with disabling conditions. Education is the key to fostering a more realistic and more constructive understanding of the capabilities, rights, and needs of people with disabling conditions. Educational efforts should focuson three target populations: (1) the general public; (2) members of the socialservice and health care professions, especially physicians; and (3) people withdisabling conditions, their families, advocates, and personal attendants. Public Education Many secondary conditions can be prevented with the aid of an appropriately informed public. Many advocates of people with disablingconditions and many care providers believe that if physical and attitudinalbarriers to participation in society, including employment, are eliminated, thenthe estrangement, isolation, depression, and poverty that often accompanydisabling conditions will decrease. The committee recognizes that societal attitudes are slow to change, although the recently passed Americans with Disabilities Act can be animportant catalyst. Moreover, to be effective, education programs must be theproduct of thoughtful and deliberate planning. This committee is not expert inthe field of education, and therefore does not prescribe specific educationalmeasures to foster integration of people with disabling conditions into thecommunity. Rather, it recommends that education planners and others focus their efforts on conveying five basic messages: 1. People with disabling conditions constitute a large segment (14 percent) of the population. 2. Regardless of their current health status, most people are at risk of developing a disabling condition. 3. All rights of citizenship extend to the population with disabling conditions. 4. People with disabling conditions can be productive members of society. 5. People with disabling conditions can achieve a high quality of life. PREVENTION OF SECONDARY CONDITIONS 230About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Education of Health Care Professionals Most schools of medicine, nursing, and allied health have not properly prepared health care professionals to address problems and issues related todisability and chronic disease. Medical schools, for example, rarely includerehabilitation as a standard clinical rotation, nor do they foster theinterdisciplinary skills and the commitment to teamwork that are necessary toaddress the varied needs of people with disabling conditions. The complexity of problems associated with chronic illness and disability demands that all health care professionals become familiar with therehabilitation process and the importance of evaluating the entire socialsituation of the person with a disabling condition. In medical schools, the likelylocus for this responsibility would be a department of physical and medicalrehabilitation (PMR). Unfortunately, most medical schools do not have such a department, although the Graduate Medicine Education National Advisory Committee identified PMR as one of three medical specialties with personnelshortages. The shortage of PMR specialists underscores the importance ofacquainting all future health care professionals with the needs of people withdisabling conditions. Specific accreditation criteria are needed for assessing whether medical schools provide adequate education on the prevention of disability and secondary conditions and on the rehabilitation of people with physical or mental disability. In addition, training in disability prevention and in rehabilitation should be included, as appropriate, in the education of medicalspecialists. Similarly, schools of nursing and allied health should include the prevention of physical and mental disability and of secondary conditions in their curricula. Given the prevalence of disabling conditions in the general population and the demographic trends, ever larger numbers of practicing health careprofessionals will be called on to provide treatment, health maintenance, andrelated services to people with chronic disease or disabling conditions. The continuing education of physicians and other health care professionals should include training on the risks of secondary conditions and on general methods of rehabilitation. Education of People with Disability Information, it has been said, is power. This adage certainly applies to people with disabling conditions, who should retain primary responsibility fordecisions affecting their health and quality of life. The problem, however, isthat people with disabling conditions need sound information on PREVENTION OF SECONDARY CONDITIONS 231About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
which to base their decisions. Often the information is not available; if it is, it frequently must be gathered from disparate, hard-to-identify sources. In this "information age," one often hears that information overload is a problem —but this is not the case for people with disabling conditions. Numerous data bases on assistive technologies exist, for example, but most aresmall, and they often contain incomplete or outdated information. Very few ofthese data bases achieve the desirable end of providing links among people withdisabling conditions, health care professionals, and manufacturers of assistivetechnologies. It would be naive to assume that comprehensive information networks — which might include information on community health and social services,assistive technologies, nutrition, and medications — can be developed overnight. But the tools do exist, and steps to achieve this goal could beundertaken incrementally. Independent living centers, many of which havedeveloped data bases that provide at least some of the information people with disabling conditions need, offer a foundation on which to build comprehensive local information networks. Technology, however, will never replace face-to-face interaction as a means for imparting necessary information and teaching important skills. If weexpect people with disabling conditions to take primary responsibility for theirwell-being, then physicians and other service providers must advise theirpatients on how to maintain or improve their health status and reduce the risk ofsecondary conditions. Moreover, physicians must be prepared to counsel theirpatients and families on the strengths and limitations of alternative modalities of care, including potential impacts of these modalities on quality of life. There is also an important ancillary role to be played by formal education programs on a variety of topics, including health promotion, assistivetechnologies, stress control, and home safety. These could be developed underthe auspices of public health departments; departments of preventive medicine,geriatrics, or physical medicine and rehabilitation at local medical schools;independent living centers; local rehabilitation centers; foundations; andvoluntary organizations. Educational programs on topics related to the prevention of secondary conditions need to be expanded with emphasis placed on reaching people with disabling conditions, their families, advocates, and personal attendants. Finally, persons with disabling conditions need to be taught skills that will help them live full, rewarding lives. Good organizational and time managementskills can assist these people in compensating for their functional limitations, and training in these important skills is often necessary. PREVENTION OF SECONDARY CONDITIONS 232About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
In addition, functional limitations often make it difficult, if not impossible, for adults with disabling conditions to return to their old jobs without trainingand modification of the work environment. Some will not be able to return totheir previous occupation at all, necessitating training in a new skill orprofession. Thus vocational training is often critical to ensuring one's return tothe work force. Environmental Considerations The quality of life of a person with a disabling condition is closely linked to the person's social and physical environment, on both large and small scales. Because of the multifaceted nature of this relationship, trade-offs may benecessary. Someone who uses a wheelchair and lives in a northern state, forexample, may be forced to limit his or her outdoor activities during the wintermonths because of icy conditions and low temperatures. A person who has the same limitation but lives in the South or Southwest will confront far fewer weather-related barriers. For many people, however, relocating to an area with amore benign climate is not financially feasible or even desirable. Moving mayentail loss of friends and family contacts, loss of job, and other costs thatoutweigh climate-related advantages. When the focus shifts to the individual's general surroundings, other important variables come into play, such as proximity to health services, work,stores, recreational establishments, and family and friends; accessibility tobuildings and public transportation; availability of housing; and opportunitiesfor employment. Not all of these variables are under the control of theindividual. For example, social attitudes and public policy are the primarydeterminants of whether public buildings are accessible to people in wheelchairs or whether local employers are willing to invest in the workplace modifications that may be required by people with disabling conditions. Distance to needed services, however, may be within the control of the individual. Generally, the greater the distance to services, the more dependent aperson with a disabling condition is on the assistance of others. Thus a personwho lives in an urban environment may be more autonomous in his or herpersonal affairs than someone who lives in a rural area and must depend onothers for transportation and to make necessary purchases. The home environment introduces new considerations that are primarily related to safety and to the performance of basic living activities. Financialresources and the reimbursement policies of public and private insurers are theprimary determinants of whether the immediate living environment is adaptedto the needs and capabilities of the person with a disabling condition. Many "off-the-shelf" assistive technologies can be instrumental in promoting greaterautonomy. But, as discussed previously, these technologies often do not qualify for insurance coverage. PREVENTION OF SECONDARY CONDITIONS 233About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PROTOCOLS FOR THE PREVENTION OF SECONDARY CONDITIONS Although many secondary conditions can be prevented, interventions are often ineffective because they fail to address the multiple risk factors related tothe pathophysiology and life situation of the person with a disabling condition. To be successful, interventions must be multifaceted and comprehensive. Themost effective prevention programs are longitudinal in nature and embody avariety of strategies, devised and carried out by a multidisciplinary team. Protocols would foster the integration and comprehensiveness essential to the prevention of secondary conditions. A protocol lists the evaluation,treatment, and service delivery strategies that apply to a specific type ofdisabling condition and to the characteristics of the person with the disablingcondition. Developed prospectively from general information, protocols serveas generic guidelines that assure completeness in the development of individualtreatment and service plans. Often, a protocol will list several options for eachelement in the individualized plan. Specific interventions are chosen in light of the special circumstances of the person with the disabling condition. As frameworks on which to build individualized plans, protocols must reckon with variability. The pathological processes that underlie a secondarycondition vary considerably; they can stabilize after an acute event, fluctuate inseverity over time, or be progressive. Similarly, the amount of additionaldisability that can result encompasses a broad range, influencing, for example,the decision of whether to prescribe major medical treatment or to rely oncompensatory assistive technology. Moreover, the interactive relationshipbetween the risk of secondary conditions and social, economic, and environmental characteristics introduces more variability that must be anticipated in the development of protocols. Currently, protocols to guide the development of effective prevention programs are few. As noted previously, a serious obstacle is the paucity ofevaluative information on the effectiveness and outcomes of interventions formany secondary conditions. Evaluative studies are needed to determine the effectiveness and costs of interventions for major secondary conditions. As part of this effort, consensus conferences should be conducted to review existing knowledge inthose areas where research and clinical experience are sufficient to develop model protocols for the prevention of secondary conditions. As the primary sponsor of effectiveness and outcomes research, the Agency for Health Care Policy and Research would be the appropriate agency to assume leadership in initiating these activities. PREVENTION OF SECONDARY CONDITIONS 234About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
The nature of these recommended initiatives will differ somewhat from the effectiveness and outcome research and the protocol development going on inother areas of health care. One important distinction is the especially significantrole played by social and environmental risk factors in the occurrence ofsecondary conditions. Another is the emphasis of preventive interventions onimproving quality of life. The remainder of this chapter focuses on the general components of protocols for the prevention of secondary conditions. Definition of Disability Category The initial step in protocol development is to determine the category of the disabling condition. Ordinarily, a diagnostic category reflects what is knownabout the pathologic process, including the etiology and the anatomic site ofinvolvement. Individual cases within a given diagnostic category will varywidely in their course. Recognition of this variability at the outset helps alert care providers using the protocol to the importance of evaluating alternative interventions. The protocol should also list secondary conditions associated with the category. Supporting informational elements include descriptions of the signsand symptoms of the pathologies, impairments, and functional limitations thatcan lead to a secondary condition and additional disability. For each secondary condition, the range of potential outcomes should be specified. Specification of Health Maintenance and Medical Interventions The importance of preventive measures should be recognized at the outset of treatment for a disabling condition, and major emphasis on these measuresshould be sustained throughout the life of the person with the condition. Asdiscussed previously, the cornerstones of a healthy lifestyle for people withdisabling conditions are the same as those for people without disablingconditions. They include regular exercise, appropriate nutrition, weight control,abstinence from smoking and illicit drugs, moderate consumption of alcohol, stress control, and adequate sleep. Strategies for accomplishing these healthful behaviors often must be tailored to the particular needs and functional limitations of the person with adisabling condition. A person with restricted motion of the joints, for example,will require assistance in performing stretching exercises, and adaptiveequipment may also be needed. Failure to accommodate these needs increasesthe risk of contractures, pressure sores, and other secondary conditions. Whenpossible, protocols should spell out the risks of developing secondaryconditions when specific health promotion and maintenance objectives are not fulfilled. Medical interventions are often prescribed to minimize the effects of the PREVENTION OF SECONDARY CONDITIONS 235About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
existing disabling condition. The protocol should familiarize providers with the potential iatrogenic effects of medications and other interventions commonlyprescribed for people with a specific category of disabling condition. Drug sideeffects, for example, may increase the risk of developing a secondary condition. If the primary disabling condition or other existing factors pose a high risk of secondary conditions, the physician should consider medical interventionsfor reducing the risk. Changes in bladder functioning and emptying dynamicsfollowing spinal cord injury, for example, require intermittent catheterization orother bladder management techniques. A consequence of these interventions is often an elevated risk for urinary tract infections. Thus the protocol for the care of people with spinal cord injury should include alternative strategies forbladder management and for reducing the risk of urinary tract infection. Specification of Rehabilitation Interventions Rehabilitative measures intended to minimize the effects of disabling conditions must be an integral part of protocols for preventing secondaryconditions. Protocols should list measures that focus on the primary disablingcondition and, where appropriate, on secondary conditions that are directly orindirectly related to the primary disabling condition. For instance, weakness ofan extremity is common after plexus injury that involves nerves in the extremities. The nerve damage then predisposes the affected individual to contractures of the joints and muscles of the involved extremity; thecontractures are secondary to the original pathology. Ordinarily, the moreremote a secondary condition is from the original pathology, the greater thelikelihood of success in preventing its occurrence, assuming appropriateinterventions are applied. Rehabilitation should focus on permitting the person with a disabling condition to perform the normal roles of life, with or without assistance. Accomplishing this goal entails decisions that require reckoning with trade-offsand evaluating the improvement in functioning that can result from interventionin medical and nonmedical contexts. The prospects for successful rehabilitation are also influenced by predisability personality traits, and these need to be taken into account in thedevelopment of a rehabilitation protocol. Krueger (1981) notes that people whotend to be overly conscientious and strive for independence have traits that bodewell for rehabilitation. Tucker (1984) makes the important points thatmotivation is a critical determinant of rehabilitation success and that motivationis both an intrapersonal and interpersonal phenomenon: If a patient is consistently devalued, is not given support for progress, and receives a hopeless prognosis, he or she will give up and appear PREVENTION OF SECONDARY CONDITIONS 236About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
unmotivated. Once such a derogatory label is applied, it is a signal that rehabilitation efforts will fail. But if the person is given positive feedback, the individual's motivation to strive will be enhanced. Potentially, a beneficial cycle or ''recipe for motivation" can emerge. If the potential for improvement is only marginal, then the impact on the person's lifestyle may be insignificant. Therefore, it may be more fruitful toreallocate resources from physical therapy to purchasing assistive technologyand training the person to use that technology. The impact of assistivetechnology on the individual's quality of life may be far greater than the minorimprovement in functioning achieved with extensive occupational and physicaltherapy. Specification of Assistive Technologies Appropriate assistive technology can significantly reduce the impact of disabling conditions on personal autonomy and participation in the everydayaffairs of society. Selection of assistive technology should be done incollaboration with the person with the disabling condition, who should identifythe tasks that are most significant to maintaining his or her lifestyle. Assistive technologies offer two separate but related strategies for helping to ensure personal autonomy. Some devices are used by the individual toimprove function. Other technologies involve modifying the environment sothat the person can accomplish tasks that would not otherwise be possible. Product quality and costs are major considerations in the selection of assistive technologies. Initial cost savings, however, should not be achieved atthe expense of reliability and quality. Moreover, protocols must acknowledgethe importance of training individuals in the use of assistive devices and ofproviding maintenance services. Specification of Environmental Changes Although several steps in the protocol are concerned with issues related to environmental surroundings, explicit consideration of potential modifications isessential. The primary goals of these modifications are to ensure safety and tofacilitate performance of tasks important to the individual. Inspection of thehome and general neighborhood will be necessary to determine whatmodifications are necessary and the feasibility of making needed changes. Specification of Elements in the Social Support Network People with disabling conditions often live an isolated existence, dependent on others to initiate social contact and even to arrange for needed PREVENTION OF SECONDARY CONDITIONS 237About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
services. Depression and neglect of self-care are two of several common consequences of isolation that increase the risk of developing a secondarycondition. Protocols must consider the availability of informal and formal socialsupport mechanisms that foster social interaction and assist in the identificationand procurement of needed services. Care providers should familiarize themselves with the individual's family situation and determine whether family members or friends are available toprovide assistance as needed. They should also be familiar with availablecommunity resources. If an independent living center or other advocacyorganization exists, providers should link the individual to these resources. Peersupport is an especially critical component of efforts to prevent secondaryconditions. A support network should be developed not only for the person with a disabling condition but also for his or her family. The form that these networksshould take cannot be specified in advance because of the considerablevariability among families. For some, regular, informal get-togethers may besufficient. For others, more formalized measures, such as support groupsessions offered by hospitals or rehabilitation facilities, may be needed. In conclusion, protocols help ensure that the total spectrum of needed interventions are incorporated into individualized treatment and service plans. Such guidance is useful to all health care and social service professionals whowork with people with disabling conditions. It is especially valuable for themany care and service providers who have little knowledge of the oftendebilitating effects of secondary conditions. Protocols will not substitute for good professional judgment in formulating effective treatment and service plans. As problem-solving aids, protocols helpfacilitate the development of treatment plans that are comprehensive andintegrate the necessary elements of care. Moreover, professional efforts todevelop needed protocols will systematically focus attention on those areaslacking interventions that have been evaluated for effectiveness. Such a systematic approach will highlight critical research needs and guide development of future prevention programs. Table 7-3 summarizes much of the information presented in this chapter. It is included as a guide for those who are interested in what information about theprevention of secondary conditions is available, and what is not known andneeded. The information is organized into four categories: services, education,research and surveillance, and coordination and oversight. PREVENTION OF SECONDARY CONDITIONS 238About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 7-3 Known vs. Needed Information About the Prevention of Secondary Conditions Category Known/Available Unknown/Needed Services Assistive technology is capable of decreasing disability and is in a rapidly expanding era with new innovations on the horizon. Where efficacious, assistive technology should be paid for as part of clinical care if it allows for life activities including work,social, recreation, and activities of daily living. Protocols aid in disability prevention and rehabilitation planning and in the identificationof potential physical and psychiatric secondary conditions. Protocols and screening instruments are needed to identify, prevent, and treatpotential secondary complications, both physical and psychiatric. Psychiatric consultation should be available to all rehabilitation personnel forpatient monitoring and treatment. Education Medical school and speciality training impart insufficient knowledge and skills in principles of physical medicine and rehabilitation and psychosocial rehabilitation. Medical school and appropriate speciality training should include curricular material in PMR and psychiatric principles appropriate to identify potentially disabling complications of illness andinjury: the curriculum also should include material on appropriate preventiveinterventions, including consultation and collaboration. Parallel training for nurses and allied health professionals is recommended. Model protocolsshould be useful for these training curricula. Allied health professionals and consumers lack knowledge of disability prevention. Consumers and the public require education about the needs of those with disability. Rehabilitation personnel are often unaware of psycho-educational approaches and processes. Students, trainees, and professionals in rehabilitationdisciplines should be trained in identification of behavioral and major mental illnesses, and the appropriate interventions and/or consultations. PREVENTION OF SECONDARY CONDITIONS 239About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Category Known/Available Unknown/Needed Practitioners are unable to maintain skills and knowledge at a level ofcurrent need to deal with disability prevention, particularly with secondary conditions. Postgraduate education should include physical and psychosocialprinciples and identification of secondary conditions with appropriate referral. Medical schools often lack curricula and departments of rehabilitation. The Liaison Committee on Medical Education of the American Association of Medical Colleges (AAMC) should develop more specific criteria foraccreditation of medical schools regarding adequate exposure to rehabilitative principles and practice. The AAMC's Accreditation Council for Graduate Medical Education shouldalso require training in primary, secondary, and tertiary disability prevention principles and treatment planning forappropriate medical speciality trainees. Assistive technology is a growing aid to rehabilitation and disability prevention. Curricula in assistive technology should be included in training for PMR, undergraduatemedical education, and allied health, nursing, and related disciplines. Research and surveillance Spinal cord injury (SCI) is the only condition for which there exists surveillance of secondarydisabilities. Disability surveillance systems should include incidence and prevalence of secondary conditions,including psychiatric complications. When depression occursas a comorbid condition with SCI, there is a high comorbidity of depression and other psychiatriccomplications, as well as a high correlation with physical complicationssuch as contractures and decubiti. Research is needed todetermine how intervention affects the prevention of secondary conditions, includingpsychiatric complications. PREVENTION OF SECONDARY CONDITIONS 240About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Category Known/Available Unknown/Needed Protocols can be useful in effective treatment planning, especially fortrainees and for professionals with less specific training. Assessment is needed of the efficacy of protocols for treatment of primarydisabling conditions and prevention of physical and psychiatric secondary disabilities. Assistive technology can prevent some secondary disability (e. g., motorized wheelchair mobility and access to work, social activity, andrecreation). Support is needed for further research and development of assistive technology and its effect on secondary disabling conditions. Coordination and oversight Responsibility for research, service, education, and funding is under multiple state and federal auspices. An interagency council or forum is needed to serve as the coordinating body for the prevention activities of all federal agencies. The National Institute on Disability and Rehabilitation Research (NIDRR) and the Veterans Administrationsponsor and conduct large programs in rehabilitation research that are focused on secondary and tertiarycare. NIDRR also directs the Interagency Council on Disability Research. The Centers for Disease Control (CDC) shouldprovide leadership in setting the national agenda and direction in services,research, and surveillance in the prevention of disability. CDC's new Disabilities Prevention Program draws on its expertise in epidemiology, surveillance, andtechnology transfer in sponsoring prevention activities. Improved coordination is needed with increased emphasis on multidisciplinary approaches to prevention. PREVENTION OF SECONDARY CONDITIONS 241About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 increasethe participation of people with disabling conditions in the day-to-day activitiesof society (Vachon, 1989-1990). Yet the prevalence of disabling conditions isgrowing, and with it, annual disability-related expenditures (federal, state, local,and private), which are approaching $200 billion (Chirikos, 1989). Numerousfactors underlie these trends, many of which, such as the link between disablingconditions and low socioeconomic status, are poorly understood. Nonetheless, itis reasonable to ask whether the vast resources expended on disability areyielding 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 householdincome, net of income transfer payments, and purchases of goods and servicesmade necessary by disabling conditions, totaled an estimated $176. 7 billion in1980. Between 1960 and 1980, according to the analysis that yielded thisestimate, annual economic losses attributable to disabling conditions increasedat an average rate of 2. 7 percent (Chirikos, 1989). These estimates, althoughnecessarily rough because of the inadequacies of data available on thepopulation with disabling conditions, indicate the magnitude of savings that canbe achieved with more comprehensive approaches to primary, secondary, andtertiary prevention. Among national goals, disability prevention is akin to an orphan whose A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES242About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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, tosome degree, shortsightedness. Without coherence and coordination in theplanning and provision of services, progress against this societal and publichealth 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 lawsthat affect Americans with disabilities. " In public hearings convened by thecouncil, people with disabling conditions stated that "many programs do notmesh well with other available services, and that too often the service deliverysystem 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 toaddress 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 thisdifficulty is compounded by the formidable challenge of developing effectivelinkages among federal, state, and local agencies and between the public andprivate 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 orwho have a high risk of developing them. Many of the elements of the desirednetwork are already in place but now operate in isolation rather than ascomplementary parts of an integrated whole. Achieving an integrated servicedelivery 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 insufficient detail hampers planning, including identification of service deliverypriorities. The inadequacy of current surveillance efforts is but one of many impediments that limit the overall effectiveness of the hundreds of public andprivate programs related to disability. Rather than evaluate these individualprograms, the committee describes some of the obstacles and opportunities thatexist 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 forcertain high-risk populations, are subsets of broader social concerns. Progresstoward a comprehensive approach to disability prevention requires reckoning with the problems outlined below and capitalizing on opportunities. A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES243About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
DEMEDICALIZATION The so-called medical model has influenced the development of most of the nation's disability-related programs. The model defines disabling conditionsas principally the product of physical and mental impairments that constrainperformance. Influenced by this view, health and social agencies provide a mixof services that, for the most part, categorize affected individuals aspermanently 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 fosterdependence rather than personal autonomy. Members of these movementscorrectly argue that disability is the result of a dynamic process involvingcomplex interactions among biological, behavioral, psychological, social, andenvironmental factors. Some have called for the "demedicalization" of disabilityin 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 8million people, would like to be working (Taylor, 1989). Were the majority ofthese people not working because their disabling conditions prevented themfrom doing so, or were they not working because of hiring discrimination,transportation difficulties, or other societal barriers? Doubtless, these and otherreasons 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 isthe lack of qualifications (Taylor, 1989). Thus the survey results indicate thateducation and training are important elements of efforts to help people withdisabling conditions secure jobs. Such training and education programs must bedesigned with full recognition of the limitations imposed by one's physical ormental condition. Moreover, continued employment will often require medicalinterventions 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 preoccupationof public policy" related to disability. "[T]reating chronic illness and disabilitystrictly as medical problems," Caplan has written, "'disenfranchises'A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES244About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 tooccupy. " Disability prevention requires a change in the perspective of physicians and other health care providers to broaden modern medicine's cure-orientedemphasis on acute illness. Often, people with disabling conditions cannot becured, although this is not to say that they do not require acute care services. For these people, medical interventions are more appropriately viewed asplaying 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, asrecommended in the previous chapter, would consider not only medical needsbut also necessary environmental modifications, the availability of familysupport, and other nonmedical variables. Thus health care should be viewed asonly one component of an array of enabling interventions that have a commonaim: 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 whohave sustained severe brain injuries is generally considered to constitutesuccessful rehabilitation. Yet a growing body of research indicates a highfrequency of behavior disorders in this population, a problem rarely addressedin rehabilitation even though it is believed to be a major cause of job loss. Agreater 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 promulgated226 health promotion and disease prevention objectives to accomplish fivenational health goals by 1990 (U. S. Department of Health and Human Services,1980a). Measured against 1977 benchmark statistics, these goals were toachieve the following: 35 percent fewer deaths among infants, 20 percent fewerdeaths among healthy children between the ages of 1 and 14, 20 percent fewerdeaths among adolescents and adults between the ages of 15A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES245About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 toachieve specific aims. A mid-decade review (U. S. Department of Health and Human Services, 1986) reported that the nation was progressing towardachieving about two-thirds of the measurable objectives. (About one-fourth ofthe 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 ofhigh blood pressure, immunization, infant health, accident prevention and injurycontrol, nutrition, and physical fitness. This is not to say, however, thataccomplishing the objectives would not translate into significant advancesagainst some disabling conditions. A review of the objectives to determine theirapplicability 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, andconcerns 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 reducingmorbidity. Indeed, a reduction in mortality, such as traffic-related deaths, maymask an increase in disabilities resulting from injuries sustained in motorvehicle collisions. A related criticism was that the objectives neglected theincidence 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 priorityarea focuses specifically on "diabetes and chronic disabling conditions. " Thepriority 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 theimplementation 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 A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES246About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
importance of secondary and tertiary prevention is not fully acknowledged. Many objectives fail to recognize that mortality is not the only outcome ofdisease and injury. In fact, many chronic conditions do not ordinarily lead todeath, and their impacts are measured more appropriately by indicators ofquality of life rather than by mortality. For example, one objective calls forreducing 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 toreduce the rate of disability or activity limitation caused by stroke. 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. The establishment of a distinct set of national goals related to disability was proposed in 1986 in federal rehabilitation legislation, but the proposal didnot pass (Vachon, 1989-1990). The goal of disability prevention would beadvanced significantly if it were fully incorporated into the nation's healthobjectives. 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 illnessesand conditions. Although mortality is the measure used for evaluating theimpact of the interventions, the means of intervention go beyond primaryintervention to include regular screening (secondary prevention) andrecommendations A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES247About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
for early and persistent treatment (tertiary prevention). The report describes a key role for primary caregivers in screening for many conditions andimmunizing for others. It also emphasizes strengthening the clinician's role incounseling patients to change unhealthful behaviors related to diet, smoking,exercise, injury, and sexually transmitted disease. Indeed, this approach shouldbe 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 wasallocated for income support and medical coverage (National Council on the Handicapped, 1986). The remainder was divided among research and a varietyof service-related activities, especially in the areas of education, housing, andtransportation. 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 ofdisabling conditions. The department's special education programs offereducational and related services focused on children and youth with disablingconditions, serving about 4. 5 million individuals from birth through age 21(U. S. Department of Education, 1989a). Moreover, several programs, especiallythose that provide income compensation, are linked to specific occupations orgroups 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 andadministered. For example, SSDI and Medicare are managed at the federallevel, although many administrative responsibilities are delegated to the states. In contrast, the Supplementary Security Income program, Medicaid, andvocational rehabilitation programs are jointly funded but administered at thestate level, while municipalities manage most housing and transportationprograms. 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 eligibilityrequirements, lack of information, separation of complementary services, lackof 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 reducethe prevalence of disability. A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES248About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 equalopportunity, independence, prevention, and self-sufficiency" (National Councilon the Handicapped, 1986). This imbalance and its attendant problems are mostapparent in the SSDI program, which made payments totaling $15. 9 billion to 3million 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 historybut are unable to engage in any "substantial gainful activity" because of amedically determined physical or mental impairment that is expected to resultin 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 reducecash benefits if a beneficiary refused rehabilitation without good cause. Moreover, the Social Security Administration directed the states to require thatevery applicant for disability benefits be interviewed by a rehabilitationcounselor. 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. Havingsatisfied rigid criteria, SSDI beneficiaries then have the option of undergoingrehabilitation, assuming that they meet an additional set of requirements,including a demonstrated potential for work. However, this potential might beviewed as jeopardizing one's eligibility for compensation, serving as a deterrentto 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, thechances for successful rehabilitation. Other incongruities arise when it isdetermined that applicants do not meet SSDI requirements and yet are classifiedas too impaired to satisfy Social Security Administration eligibility standardsfor rehabilitation services. Rehabilitation is a small component of SSDI and the Social Security Administration's other disability-related programs, and the results have beenequivocal. The Beneficiary Rehabilitation Program, begun in 1965, allocatedmoney from the SSDI trust fund to reimburse states in full for rehabilitation A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES249About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
services provided to SSDI recipients who satisfied certain criteria, including predicted length of employment following rehabilitation. A program aim was tosave trust fund money by ultimately decreasing the number of SSDI claimants. Early indications of promising performance, which spurred an increase infunding from $40. 5 million in 1970 to $102. 6 million in 1976, were notconfirmed 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 rehabilitationservices provided to recipients of federal disability benefits. Among otherrestrictions, this provision applies only if the beneficiary returns to work andremains employed for nine consecutive months (Institute of Medicine, 1987). This provision is little used, as is provision for a trial work period that allowsearning 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, paysfor 80 percent of the services, and the states provide the remaining 20 percent. This partnership spent $1. 7 billion on vocational rehabilitation in 1988, fundingsuch services as job training, counseling, and placement; some medical care; thepurchase 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 220,000recipients of these services totaled 45 percent fewer than the number served in1974. Based on a survey conducted for the ICD (Louis Harris and Associates,1986), Vachon (1987) reports that 10 percent of the working-age populationwith disabling conditions used the services of the publicly funded program, andhalf of this group said their participation was of little or no value in securing ajob. Vachon notes a high level of dissatisfaction with federal-state programs, noting that, for example, some state workers' compensation agencies havediscontinued using program services and have opted to purchase privaterehabilitation services. Another criticism is indicative of the controversysurrounding the role of vocational rehabilitation and the conflicting views overthe proper client population. Vachon criticizes the "federally mandated 'order ofselection,' 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 effortsof the Social Security Administration; that is, the agency has been accused bysome of practicing a form of triage, in which only those most likely to findwork 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 A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES250About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 La Plante's (1989b)analysis of the disability risks of chronic impairments, which found that about 1million 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 indicatesthat shrinking labor supplies have increased private-sector interest in employingpeople with mental impairments. Firms that have reportedly increased hiring ofworkers who are mentally retarded or who have other disabilities include Marriott, Pizza Hut, Mc Donald'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 contradictionsinherent in public programs and their guiding policies. Debate over these issuescould be constructive if it leads to a set of complementary goals and a rationalset of services. The boundaries of this debate should be expanded to take the experiences of other nations into account. Though international comparisons are limited, thefew that have been conducted draw attention to this country's fragmentedapproach to addressing the financial and rehabilitation needs of people withdisabling 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. Theflexibility 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 disablingconditions to the work force. Public funds pay for adapting the job site to theworkers' 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-relatedtransportation, and West Germany provides an allowance to help pay the cost oftraveling to work. The United States should more carefully consider the approaches used in A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES251About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Western European countries (e. g., the Netherlands, Sweden, England, and France), where disability prevention is viewed from a broad perspective thatincludes social and ethical implications and socioeconomic costs. Part of the European approach entails the formation of councils and task forces comprisingpeople with disabilities, their families, personal attendants, and advocates, andthe 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 andthe payer. An international task force to study social and medical guidelines forthe development of services to prevent disability and secondary conditionswould 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 rapidlyincreasing 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 tonearly 40 million; millions more are underinsured, facing the risk of significantout-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 barriersto adequate care for the population with disabling conditions and the populationthat has a high risk of developing them. Lack of access to health care fuels theprevalence of disabling conditions by limiting the availability of services for theprevention of the impairments that lead to functional limitation and, ultimately,to disability. However, this is only one aspect of the problem, albeit a criticalone. 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 furthercomment. 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 yieldonly a cursory assessment. A 1984 National Health Interview Survey estimatedthat about 11 percent of 22. 2 million people who are limited in the performanceof their major activity do not have insurance ( Table 8-2 ). The same survey also found that a substantially higher proportion of the population with disablingconditions —nearly 60 percent —were more A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES252About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
likely to depend, at least in part, on public insurance programs than were those in better health, 16 percent of whom have public insurance. TABLE 8-2 Health Insurance Status of Persons With and Without Limitation of Major Activity Due to Chronic Conditions, 1984 Persons With Major Activity Limitation Persons Without Major Activity Limitation Insurance Status Number(millions) Percent Distribution Number(millions) Percent Distribution Privateinsurance 14. 0 63. 1 154. 5 78. 3 Public insurance Medicaid 3. 2 14. 4 10. 0 5. 1 Medicare 8. 2 36. 9 15. 6 7. 9 Military-VA 1. 7 7. 6 5. 7 2. 9 Uninsured 2. 4 10. 8 26. 5 13. 4 Total 22. 2 100. 0 197. 3 100. 0 SOURCE: Adapted from Griss, 1988. For persons with a work disability, the Survey of Income and Program Participation (SIPP) shows that uninsured persons with a work disability rangefrom 11. 9 percent among those employed full time to a high of 21 percentamong those employed part time. About half the uninsured with a workdisability are not employed and not receiving Supplemental Security Income or SSDI (Griss, 1988). Given higher-than-average levels of poverty and unemployment among people with disabling conditions, and given the fact that poverty andunemployment are strongly correlated with lack of health care coverage, thepopulation with disabling conditions is especially at risk of not having financialaccess to medical services, despite its greater need for these services. Accordingto a 1986 Robert Wood Johnson Foundation survey (1987), 12 percent of thepoor reporting a serious or chronic illness did not have insurance, as comparedwith 4 percent of the nonpoor population with similar conditions. Alsorevealing is the same survey's findings on use of health care services. Nearly 16 percent of the population with a chronic illness, or 7. 7 million people, did not make a visit to a physician's office during the preceding 12 months. Given thatthe average chronically ill person made eight such visits during the year, thelarge number who did not receive ambulatory care strongly suggests a problemin obtaining needed services, even for individuals with some type of insurancecoverage. The availability of insurance does not necessarily translate into accessto needed services. Compounding this problem are current trends in approaches to financing A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES253About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
health care, which may be at odds not only with the aim of increasing insurance coverage but also with the goal of increasing employment among people withdisabling conditions. Two-thirds of the working-age population with disablingconditions are unemployed, depriving them of access to employer-providedinsurance, the primary source of coverage in the United States. Although manyof these people say they are able and willing to work, the desire of businesses to control spending for employee health care benefits is likely to raise another obstacle to finding a job. Since the passage of the Employee Retirement and Income Security Act in 1974, an increasing number of businesses are opting forself-insurance. As allowed under the act, in exchange for assuming all or part ofthe risk of paying for claims submitted by their workers, self-insured firms areexempted from state insurance regulations. These businesses, which areestimated to employ more than half of all U. S. workers, have an economicincentive to screen job applicants and to remove from consideration those withchronic and disabling conditions that might lead to high medical expenses(Rublee, 1986). Between 1981 and 1983, nearly 60 percent of new workersunderwent preemployment and preplacement screening, as compared with 48percent of the workers hired between 1972 and 1974 (Ratcliffe et al., 1986; Stone, 1989). Employment, however, does not guarantee health care coverage. Of the estimated 31. 1 million Americans who are uninsured, according to federalestimates, more than half —a total of 16. 6 million Americans —have jobs. More than 40 percent of the people who are employed but uninsured work atbusinesses with fewer than 24 employees (Freudenheim, 1990). The underwriting practices of private insurance companies pose problems for people who would like to acquire coverage on their own. In contrast toworkers who are automatically eligible for group coverage under the healthplans of employers, individuals must undergo insurer-required medicalexaminations. Commonly, insurers deny coverage to people with chronic ordisabling conditions, or they classify these applicants as "substandard risks" and charge higher premiums. Individual insurance is already much more expensive than group insurance, and for many people, especially those who cannot workfull time because of a disabling condition, substandard premiums makecommercial policies unaffordable. Sometimes insurers accept people withchronic conditions, but with an exclusion that waives coverage for preexistingconditions (see Table 8-3 ). Types of Health Care Services As noted in the preceding discussion, insurance coverage does not necessarily translate into coverage for the types of health care services requiredby people with disabling conditions. Generally, coverage is limited to acute careand for the most part excludes services recognized as important elements A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES254About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
of secondary and tertiary care. Most private policies, for example, cover rehabilitation services only in acute care hospitals, usually for the length of thehospital stay or, perhaps, a month or two afterward. However, for manytraumatic injuries and chronic conditions such as stroke and paralysis,rehabilitation should begin only after the acute condition has stabilized andhospitalization is no longer needed. TABLE 8-3 Risk Classification by Commercial Health Insurers: Common Conditions Requiring a Higher Premium, Exclusion Waiver, or Denial Higher Premium Exclusion Waiver Denial Allergies Cataracts AIDS Asthma Gallstones Ulcerative colitis Back strain Fibroid tumor (uterus) Cirrhosis of liver Hypertension (controlled) Hernia (hiatal/inguinal) Diabetes mellitus Arthritis Migraine headaches Leukemia Gout Pelvic inflammatory disease Schizophrenia Glaucoma Chronic otitis media (recent)Hypertension (uncontrolled) Obesity Spine/back disorders Emphysema Psychoneurosis (mild) Hemorrhoids Stroke Kidney stones Knee impairment Obesity (severe)Emphysema (mild-moderate)Asthma Angina (severe) Alcoholism/drug abuse Allergies Coronary artery disease Heart murmur Varicose veins Epilepsy Peptic ulcer Sinusitis, chronic or severe Lupus Colitis Fractures Alcohol/drug abuse SOURCE: U. S. Congressional Office of Technology Assessment, 1988a, 1988c. Common to Medicare, Medicaid, and private policies, another restriction is the stipulation that reimbursement will continue only for as long as the personreceiving rehabilitation services continues to show improvement in functionalcapacity. Yet for many people —for example, those with head injuries or chronic heart conditions —improvement in functional capacity may not be apparent until long after the start of therapy. This restriction also ignores therehabilitation goal of maintaining capacity and of halting or slowing declines infunction in people with degenerative conditions. Two major obstacles to longitudinal care are the apparent bias of public insurance for institutionalization instead of in-home care and the denial ofcoverage for assistive technologies and services that are necessary for personalautonomy. Five federal programs fund in-home attendant-care services, and A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES255About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
each state has one program offering these services. Nonetheless, an estimated 3 million people who require the help of others in performing personal andhousehold tasks are not receiving attendant-care services (World Institute on Disability, 1987a). The Study Group on State Medicaid Strategies estimatedthat 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 andfriends 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 disablingconditions. Moreover, the additional responsibilities of the caregiver have notreceived adequate attention. For example, an increasing number of householdsare providing care for elderly family members. The caregivers usually aremiddle-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 theirwidowed mothers reported that half of the daughters were working. Half ofthose who were not working had quit their jobs to care for their mothers, and aquarter 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 adisabling 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 inthe home. Federal and state governments pay for much of this bill; publicexpenditures 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 servicescould be used more efficiently, resulting in improved services for a greaternumber of people in need and at least delaying institutionalization and its highercosts. Recognition of this problem is growing. The Medicare Catastrophic Coverage Act paid for 38 days of home care and 80 hours of respite care forpeople who assist Medicare recipients in their homes. Strong opposition to thesurtax designed to help finance these and other benefits led to the repeal of theact in late 1989, 16 months after its initial passage. Still continuing is a separatedemonstration 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 healthcare workers (Lewin, 1989). A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES256About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Related to issues concerning the availability and nature of long-term care are often incongruous insurance policy restrictions on assistive technologies, asdiscussed in the preceding chapter. Medicare, which has covered SSDIbeneficiaries since 1972, pays for certain equipment required by people withdisabling conditions, but its criteria for determining what is essential aredictated 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 onthe Medicare screening list for durable medical equipment. When theimportance of, for example, augmentive communication devices or personalhygiene aids is not recognized, dependence is fostered, which can lead toinstitutionalization. Timing is also an important but often neglected element of effective longitudinal care. Again Medicare, which provides health care coverage for 37percent of the population with disabling conditions, serves as an example. All SSDI recipients are eligible for Medicare. However, their coverage does notbegin until two years after their first SSDI payments, which start five monthsafter 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 healthstatus can occur. Although more studies are needed, a growing body of researchindicates that the earlier rehabilitation begins after a patient's condition hasstabilized, 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 availableearlier, could have prevented the onset of the disability. Researchers from the American Foundation for the Blind evaluated access to care for the estimated 2million people with low-vision conditions (Kirchner et al., 1985). They studiedfour categories of care: (1) evaluation, diagnosis, and prescription; (2) therapyand 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 ofelderly, visually limited persons who are eligible for Medicaid lived in statesthat did not provide coverage for services in any of the four categories. Only 20percent of this population lived in states that provided coverage for allcategories of care. The results point to a classic contradiction applicable to virtually all disabling conditions. The widespread unavailability of coverage forcomprehensive care means that many working-age people are not insured forneeded services while they are employed. If they cannot afford to pay forneeded services and their conditions deteriorate, they are in jeopardy of losingtheir jobs. If A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES257About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 doingso, but largely independent of each other. Some structural reorganization mightpromote greater coherence and coordination of efforts, but wholesalerestructuring of the bureaucracy to create a superagency that embraces alldisability-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 effortswithin and among the categories of surveillance, research, and services andacross governmental boundaries should be one of the primary goals of disability-related programs. This observation is not new, nor is the need unique todisability-related programs. Greater coordination is the grail of most largepublic and private organizations. The committee considered the possible overlap between the congressionally mandated responsibilities of the federal Interagency Committeeon Disability Research (ICDR), which is under the leadership of the National Institute on Disability and Rehabilitation Research, and the role of the recentlyestablished Disabilities Prevention Program at the Centers for Disease Control. The primary difference between these two activities is that the ICDR does notfocus 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 neednecessitate a large, well-coordinated program of disability prevention. Asummary description of some of the federal programs that focus onrehabilitation 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 programof applied and clinical research that has the aim of advancing A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES258About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
procedures, methods, and devices that can improve the lives of people with mentally and physically disabling conditions. An overriding goal of the agencyis to foster developments that facilitate integration of people with disablingconditions 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 ofwhich are located at universities. Both types of centers have core specialties,and emphasis is on transferring useful research results to the service deliverysystem. Specialties of the multidisciplinary centers include functional electrical stimulation, musculoskeletal disorders, work-site modifications, deafness and communication disorders, blindness and low vision, mental illness, mentalretardation, and developmental problems of newborns with disabilities andneuromuscular disorders. Separate from the centers is the NIDRR-supportednetwork of 13 Model Spinal Cord Injury Care Systems, each providing anintegrated set of services to patients with spinal cord injuries. The networkincludes the National Spinal Cord Injury Statistical Center, which collects andanalyzes 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 toservice providers and their clients. The institute supports investigator-initiatedresearch projects; awards small grants for testing new concepts, prototype aidsand devices, and training curricula; and funds a small research trainingprogram. 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 NIDRRdirector is the chairman of the Interagency Committee on Disability Research,which is charged with promoting communication and joint research activitiesamong 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 thedepartments 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. Apartfrom these projects are basic studies that are helping to elucidate the biologicalunderpinnings 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 175A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES259About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
separate projects at 60 Veterans Administration (VA) medical centers. It also supports three rehabilitation research and development centers and anevaluation unit that assesses new prototype devices and techniques and seeks topromote commercial interest in promising concepts. Priority research areasinclude 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 researchincluded 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 threesupporting elements —surveillance, research, and services —of an integrated system of prevention and longitudinal care. Projects address issues relevant toprimary, secondary, and tertiary prevention. Communication of research resultsis 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 ofapproximately $24 million, the program supports 35 research projects and seveninjury prevention research centers. Some centers carry out broad programs ofresearch, 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 incooperative research and demonstration projects with several universities andstate and county health departments. The staff also provides technical assistanceto requesting state and local agencies. At the federal level, the program hadprimary responsibility for developing the Year 2000 National Health Objectivesfor 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 atthe CDC. The program focuses on three areas: developmental disabilities,injuries to the head and spinal cord, and secondary conditions in people withphysically disabling conditions. Like the Injury Control Program, the A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES260About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 forintervention and guide development of prevention strategies. In 1988 the CDCprogram initiated cooperative projects in nine states. In five of these states, theaim 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 onsuch problems as urinary tract infections and decubitus ulcers in people withspinal cord injuries and late-developing complications in people withpoliomyelitis, 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 embodyan integration of efforts, are carried out under the aegis of other agencies. Forexample, 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 anddevelopment, from gametogenesis through maturity. Early detection andintervention, as well as restoration of function in children with disablingconditions, are overriding goals of the institute-supported research. Similarly, amajor focus of research sponsored by the National Institute on Aging (NIA) ispreventing degeneration of physical and mental functions in the elderly. Inaddition, the need and potential for rehabilitation among the elderly areaddressed in NIA's epidemiologic, behavioral, clinical, and basic researchprograms. In November, 1990, a National Center for Medical Rehabilitation Research was established within the NICHHD. The mandate of the center includes theconduct and support of research and research training, the dissemination ofhealth information, and other programs for rehabilitation of individuals withphysical 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 makesdisability prevention a federal, state, and local responsibility. Governmentinvolvement at all three levels is a necessary condition for progress, but bythemselves, public-sector efforts are not sufficient. Also necessary A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES261About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 casualtyof declining resources and a growing list of health problems (Institute of Medicine, 1988a). Disability prevention, however, can build on the traditionalstrengths of the public health system, assuming needed investments in capacityare made. In addition, new, more expansive approaches are required to developthe 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, butoften within isolated administrative compartments of the bureaucracy, and eachcategory 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 thatare 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 progressionto disability may be reversed, and the chances for finding a job and affordablehousing increased. Conversely, the health of a person with a chronic conditionwho cannot obtain needed medical services is likely to deteriorate, and with itthe ability to work. The resulting reduced income may not be sufficient to meetrent or mortgage payments. If unable to find affordable housing, this personmay 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 theunavailability 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 governmentshould provide leadership, financial support, and technical resources to statesand localities. Although federal budget constraints are real, they do not precludesetting realistic goals for disability prevention, nor should immediate budgetaryexigencies obscure the cost savings and increased productivity that will accrueto 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 preventionhave 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 allpregnant women. Services are free for women with annual incomes of about$18,000 or less (150 percent above the poverty level). For uninsured womenwith incomes between $18,000 and about $30,000 (250 percent above the poverty level) the state will pay on a sliding-scale A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES262About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
basis. Financed by the state's uncompensated care trust fund, which is supported by a surcharge on private insurance, MOMS provides comprehensive medicaland nutrition services, including counseling and home visits, and arranges forthe transportation of pregnant women to and from their physicians' offices, asneeded. 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, thestate estimates that it will save $4 million annually in the form of reducedinpatient care for newborns. In addition, the drop in the number of low-birthweight infants will yield long-term savings because of expected reductionsin 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 projectsthat are investigating the utility of social health management organizations,which, by including social, transportation, health, and other services under thesame 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 acoordinated set of mental health services that are easily accessible to those inneed. 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 Agreementcalling 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 ofservices 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 beneeded. The mechanisms for achieving local flexibility and accountability arenot readily apparent, however. Thus efforts should be focused on devising andevaluating 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, allof the interrelated issues subsumed under the heading of disability prevention,from the need for affordable, widely accessible health care services toshortcomings of worker training and education programs, are of great concernto 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 A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES263About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
opportunity for people with disabling conditions. The challenge is to add to this gradually building momentum by developing mechanisms for effective linkageswithin 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 onlyon the efforts of professionals and institutions but also on the awareness,attitudes, and actions of the general public. The attitudes and behaviors of thepublic and those of health care workers, social workers, and other professionalscan 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 ofopportunity to people with functional limitations, which may as a result becomedisabilities. For too long, public understanding of disability has beensynonymous 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-22situation. " People with disabling conditions, he has written, "want to carry outthe roles and duties that they are capable of, but they must depend on society'srecognition 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 (asdescribed in Chapter 7 ): (1) people with disabling conditions constitute a large minority, one-seventh of the U. S. population; (2) most people will developconditions that increase the risk of disability; (3) disability is not inherent in anindividual; (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 conditionscan 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 mayprovide services to people with disabling conditions. With the exception ofmedical schools with departments of physical medicine and rehabilitation,however, it is unlikely that the special needs of the large population of peoplewith 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 A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES264About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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, aswell 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 ofpersonnel in key specialities. It also requires the participation of knowledgeablenonspecialists. Typically, health care services for those with disablingconditions 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 haveexperience in working collaboratively in multidisciplinary teams. Yet effectivecare 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, especiallywith regard to issues related to secondary prevention that halts or slows thedisabling process. In addition, mechanisms for coordinating research efforts andensuring 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 besupplemented by studies that address social and environmental factors thatstrongly influence the disabling process and the ability of affected individuals tolive independently. Few examples exist of crosscutting, interdisciplinary research. In the biomedical area, for example, research is often splintered according to types ofdiseases or impairments. Given the multitude of conditions that can lead todisability, 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 nonmedicaldisciplines. Traditionally, biomedical research has focused on reducingmortality. 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 mosttangible benefit from this mortality-based emphasis is the steady decline indeaths caused by heart disease. But as noted elsewhere in this report, decliningdeath rates and increasing life spans can have side effects that are masked inmortality statistics, namely, increasing morbidity and low quality of life amongsurvivors. A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES265About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Increasing emphasis on disease prevention and health promotion attests to growing recognition of the importance of quality of life as a standard formeasuring the performance of the nation's health care system and its supportingresearch enterprise. This standard should be applied more broadly andoperationalized in ways that go beyond monitoring the incidence andprevalence 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, forexample, in promoting independence among people with disabling conditions orin 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 medicalservices. If averting disease and maintaining functional capacity among peoplewith disabling conditions are shared goals, then once-isolated efforts addressingmedical, 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. A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES266About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 publichealth and medicine involve the prevention, early detection, diagnosis,treatment, and rehabilitation of potentially disabling conditions. Once such acondition is identified, however, the means of disability prevention go beyondrehabilitative restoration of function to include important social and economicfactors. 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 healthcare 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 forsuch a program is presented on the next page. The agenda includes theprogram's stated goal and five strategies for its achievement: organization andcoordination of the national program, surveillance, research, access to care andpreventive services, and professional and public education. Recommendationsare 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-relatedprograms in the federal government, but currently no one agency has been charged with leadership responsibilities that focus on prevention. The private RECOMMENDATIONS 267About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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. STRATEGIESOrganization 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 andantecedent 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. Trainingyoung 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 theimportance 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. RECOMMENDATIONS 268About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
sector must also be involved if such an effort is to be successful. The committee's recommendations below suggest mechanisms to organize andcoordinate a national disability prevention program and to provide input fromthe 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, thecouncil has been and should continue to be an effective leader in developingdisability 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 aprogram be established in the Centers for Disease Control (CDC). In 1988 CDCinitiated the Disabilities Prevention Program to build capacity in disabilityprevention at the state and local levels, establish systems of surveillance fordisabilities, 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 initialfocus 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 andcoordination 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 forscreening programs and their implementation, in the development of school andother public health curricula, and in the evaluation of public health servicedelivery programs. Given the magnitude of the public health problem disability presents and the large number of various types of disability-related public and privateprograms, there is a need for expansion and coordination of disabilityprevention 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 firststep in the development of such a framework. In addition, the informalrelationship that currently exists between it and the National Council on Disability appears to be a mutually beneficial one that has strengthened federaldisability prevention activity during its infancy. To the extent that RECOMMENDATIONS 269About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 nationalagenda 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 asmonitoring the incidence and prevalence of the conditions themselves. Theprogram should be conducted in cooperation and in partnership with state healthagencies and other public agencies. A major component of the program shouldbe the development at the state level of a sharply increased capacity to preventdisability. 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 isrequired. 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 andother 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, provisionof 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 ofdisability-related issues that would facilitate prevention. Addressing many ofthese issues requires the collaborative support and involvement of RECOMMENDATIONS 270About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 acontinuing dialogue among individuals and groups that play a significant role inshaping policy and public opinion. Areas for consideration might include accessto assistive technology and personal assistance services, gaps in healthinsurance 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 dependenton public attitudes toward people with disabilities and on the way communityactivities 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 wouldbe 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 derivesfrom the fact that essential services are funded and provided by variousagencies and by different levels of government without a clear focus ofauthority and responsibility, leading to gaps in services. The lack of RECOMMENDATIONS 271About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
coordination of health and medically related rehabilitation activities and social services is a long-standing problem that is not easily rectified. Improvementswill require energy and direction, a focus on prevention, and a clear strategy forcoordination, cooperation, and integration among several federal programs asthey are administered at the local level. These federal programs include thoseconcerned with health care (Health Care Financing Administration), disability benefits (Social Security Administration and the Department of Veterans Affairs), vocational rehabilitation (Department of Education), communitysupport (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 thefederal government (e. g., in the Office of the Secretary of the Department of Health and Human Services) to facilitate the type of coordinated leadership atthe 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 indisability 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 ofdisability, 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 asappropriate. RECOMMENDATIONS 272About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 analysisis impeded. Estimates of the prevalence of disability vary by more than 100percent. One difficulty is the conceptual confusion surrounding disability andits antecedent conditions. Until there is a consistently applied, widely accepteddefinition of disability and related concepts, the focus for preventive action andrehabilitation 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 ofimportant concepts, is an important step toward international comparativestudies of disability. The committee, however, saw a need to develop its ownsystem and in this report presents a conceptual framework and model derivedfrom the works of Nagi and the WHO that differs from both primarily in that itincorporates 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 initialsteps 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 RECOMMENDATIONS 273About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 alllocal, 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. Whendisability 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 circumstancesthat can lead to disability, the problem in its many manifestations cannot befully understood, nor can effective prevention strategies be systematicallydeveloped. Disability prevention will require expanded epidemiological studies and surveillance to identify risk factors, the magnitude of risk, and the degree towhich risk can be controlled. Because disability is the product of a complexinteraction 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 toimpairment to functional limitation to disability. Nor is there sufficient researchon the range of consequences associated with specific behaviors andcircumstances. 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 theetiology, 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 withdisabilities, (2) identifying the causes of disabilities, (3) guiding thedevelopment and selection of preventive interventions, and (4) evaluating theimplementation of interventions. RECOMMENDATIONS 274About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 apopulation develops a chronic condition, impairment, functional limitation, ordisability, thereby yielding estimates of the probability or risk of these events. Most existing data on disability provide information on prevalence, notincidence. Prevalence rates are influenced by changes in incidence and by theduration of disability. For example, if the incidence of spinal cord injury wereto remain constant but the life expectancy of the population and the duration oftime with that disabling condition were increased (a function of recovery rateand mortality), then prevalence would increase. When rates for populationgroups are compared, only incidence data provide a clear picture of how risksdiffer 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 prevalencebecause of differences in access to medical and rehabilitative care. Informationon incidence is therefore critical to a causal understanding of disability. Data onduration are also useful to gauge rates of recovery and mortality. What causesdisability and what determines its course can be understood only whenincidence and duration are known. Similarly, data are required on the incidenceand 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 conducteddisability surveys. ) The National Health Interview Survey (NHIS) includessome disability-related questions but is limited in scope because it was designedto be a general-purpose survey of the health of the nation and not an efficientinvestigation of the causes and risks of disability. Such an investigation requiresa comprehensive longitudinal survey that addresses RECOMMENDATIONS 275About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
each path of the model displayed in Figure 4 and in particular the biological, behavioral, and environmental determinants of transitions from pathology (orchronic disease) to impairment, functional limitation, and disability. Thefollowing recommendations should be especially useful in the evaluation of theimplementation 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 inthe 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 ofmeasures 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 disabilitysection 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 animportant indicator of societal well-being and help focus the attention of thepublic and policymakers on this major public health problem. Moreover, suchan index would facilitate easy-to-understand assessments of the adequacy of thenation's response to the problem. Many indexes of disability have beenproposed, but disagreement in the field over the adequacy and validity ofunderlying measures has prevented the adoption of widely acceptedbenchmarks; a major limitation is the inadequacy of the data base for examiningalternative measures. As discussed in Chapter 3, an objective analysis is needed that will lead to the development of alternative indexes of disability risk andpublic 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. RECOMMENDATIONS 276About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 notonly the occurrence of the initial event but also the progression of pathologiesto impairments, functional limitations, and disabilities. To the extent that riskfactors 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 througha 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 intothe 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 toaccurately gauge the course of disability in relation to varying risk factors or theimpact of timely interventions on the development of disability. There is thus agreat need for longitudinal studies that effectively describe the course ofdisability and identify the most strategic points for effective intervention. RECOMMENDATIONS 277About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 knowledgeis being pursued in a variety of biomedical research programs, such as thosesponsored 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 thehigh rate of disability among people of low socioeconomic status. Most studiesof disability attempt to control statistically for socioeconomic status because itis a powerful risk factor. Moreover, because socioeconomic status hassometimes been considered to be incidental to research investigations, therelationship between disability and socioeconomic status has rarely beenaddressed 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 effectivenessof current approaches in the wide variety of situations in which disabilityoccurs. All areas of prevention require critical evaluations of the effectivenessof the tools and methods used in the prevention of disability and secondaryconditions. RECOMMENDATIONS 278About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
The federal government spends about $60 billion annually for medical coverage and to supplement the incomes of people with disabilities; it spends arelatively small amount on research to identify practices and technologies thatcan prevent the initial occurrence of disability or limit complications amongpeople with disabilities to help them lead more productive lives. Moreover, thefederal 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 toprevent 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 newfindings 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 socialand 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 withstate and local health departments or other organizations concerned with disability prevention. RECOMMENDATIONS 279About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 orhave been rejected for insurance because of their disabilities. Thus the problemof access to care is even greater for people with disabilities than for the general American population. Moreover, persons with disabilities and those at risk ofdisability 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 thedifficulties faced by those with disabilities in gaining recognition of their needs(which are often complicated by the social circumstances associated withpoverty) 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 itsrelationship to employment and other issues. The committee is also aware thatresolution of many of the problems identified in this report will require afundamental restructuring of the financing and organization of the nation'shealth services. This committee was not charged with addressing these largerissues; 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 makebasic 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 healthservices. Even those Americans who have health care insurance are rarelycovered for (and have access to) adequate preventive and long-term medicalcare, rehabilitation, and assistive technologies. These factors demonstrablycontribute 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 thatemphasizes preventive care and identifies children and pregnant women as thegroups 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 asestimates of program costs and a package of basic benefits. Many aspects of theproposal could have favorable effects on the cost of health care RECOMMENDATIONS 280About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
(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 theprevention of disability. Yet the economic and political hurdles to that end areformidable, and a near-term solution is not in sight. A first step that has beenproposed 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 preventiveand 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 ofinfant mortality and morbidity, including congenital and developmentaldisability. Researchers also have documented that women who have the greatestrisk 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, poorlyeducated 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 planningservices and prenatal care. Access to prenatal diagnosis and associated services, including pregnancy termination, currently varies RECOMMENDATIONS 281About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 formany types of preventive and rehabilitative services and assistive technologies. Insurance policies tend to mirror the acute care orientation of the U. S. medicalsystem and generally fail to recognize the importance and value of longitudinalcare and of secondary and tertiary prevention in slowing, halting, or reversingdeterioration in function. The presumption, which has never been thoroughlyevaluated, is that rehabilitative and attendant services, assistive technology, andother 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 aphysician who is knowledgeable about their ongoing health care needs. Theyalso have problems obtaining timely medical care and assistive technology thatcan help prevent minor health problems from becoming significantcomplications. National data indicate that, relative to the general population,persons with disabilities, regardless of age, have high rates of use of health careservices 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 thatthe person have access to appropriate care during the full course of a disablingcondition. Such care should be provided in a way that prevents secondaryconditions and maximizes the person's ability to function in everyday socialroles. It must have continuity and not be restricted by arbitrary rules that limitservices necessary for effective rehabilitation and participation in society. Persons with disabilities often face enormous impediments to obtaining thecoordinated services they need to prevent secondary conditions and improvetheir opportunity for successful lives. Such impediments include (1) lack ofsupport from insurance and other funding agencies, (2) lack of locally availableservices, 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. RECOMMENDATIONS 282About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 maintainedif they are to avert medical complications and new functional limitations. Accordingly, the programs of health maintenance and health promotionadvocated for the general population are especially important to persons withdisabilities. Unfortunately, some of the health promotion strategies commonlyused among people without disabilities are not appropriate for people withdisabilities (e. g., some aerobic exercises for those unable to use their lowerlimbs). Thus there is a need to develop and implement health education andhealth 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 includerecreational 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 willneed to work together in order to implement prevention strategies and provideneeded assistance and longitudinal care. Effective delivery of the spectrum ofprevention services to people who have a high risk of developing a disabilityand 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 differentareas of the country. RECOMMENDATIONS 283About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 secondaryconditions. 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 promiseshould 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 anddisabling 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 readinessevaluations, job training, job placement, work-site modification, andpostemployment 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, educationalspecialists) and the general public. As the committee observes throughout itsreport, the attitudes and behavior of health professionals and the public RECOMMENDATIONS 284About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
could either facilitate effective coping and productive lives for persons with disabilities or erect obstacles in their path. For example, many secondaryconditions are preventable, but health professionals often are not familiar withthe intervention strategies that can be used, and many provide inappropriatecare 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. Thissituation is not surprising because rehabilitation has had a low priority inmedical schools and residency training programs, and many do not even offercourses on disability and rehabilitation. Similarly, personnel shortages exist inphysical therapy, speech therapy, occupational therapy, and all allied health andnursing 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 fewincentives for practicing the types of longitudinal care this committeeadvocates, and health professionals who follow these careers historically havehad 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 inthe 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 andappropriate modes of preventive intervention. The longitudinal care describedin this report is sometimes provided by specialists in physical medicine andrehabilitation, 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 professionalsas 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 andpractices appropriate to the identification of potentially disabling conditions of acute illness and injury. appropriate interventions, including consultation and collaboration with mental health and allied RECOMMENDATIONS 285About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 socialreintegration 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 encouragedand facilitated, the general public will have increased contact with people whopossess disabilities. This type of interaction should help relieve the prejudiceand ignorance often found among those who have little first-hand experience ofdisability and serve to diminish the estrangement, isolation, and depressionoften 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 ahigh 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 RECOMMENDATIONS 286About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |