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Summary of Workshop Presentations and Discussions

Alan Jette, chair of the Institute of Medicine (IOM) committee that planned the workshop, began by welcoming the participants. He noted that the workshop was the first step in a broader IOM project that would revisit the 1991 IOM report Disability in America and the 1997 report Enabling America. Dr. Jose Cordero (Centers for Disease Control and Prevention), Mr. Steven Tingus (National Institute on Disability and Rehabilitation Research), and Dr. Michael Weinrich (National Center on Medical Rehabilitation Research) provided additional welcomes. They also offered brief comments on the relevance of the workshop and the broader IOM project to the priorities and agendas of their organizations.

The morning session of the workshop was organized around two panels, the first of which focused on models and concepts of disability. The second panel provided overviews of disability trends in childhood, midlife, and late life. The first of the afternoon panels considered disability issues over the human life span, specifically, risk factors for disability late in life and transitions or transfers in care for adolescents and young adults. The other two afternoon panels provided perspectives on the nature and the prevention of secondary health conditions.

As noted in the introduction, this summary is based on the presentations and discussion during the workshop and does not necessarily reflect the views of the IOM committee that organized the meeting. The committee is preparing a comprehensive report that will cover a range of issues, including the topics discussed in the workshop. That report, which will include recommendations, should be released in early 2007.



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Workshop on Disability in america A new look: Summary and background papers Summary of Workshop Presentations and Discussions Alan Jette, chair of the Institute of Medicine (IOM) committee that planned the workshop, began by welcoming the participants. He noted that the workshop was the first step in a broader IOM project that would revisit the 1991 IOM report Disability in America and the 1997 report Enabling America. Dr. Jose Cordero (Centers for Disease Control and Prevention), Mr. Steven Tingus (National Institute on Disability and Rehabilitation Research), and Dr. Michael Weinrich (National Center on Medical Rehabilitation Research) provided additional welcomes. They also offered brief comments on the relevance of the workshop and the broader IOM project to the priorities and agendas of their organizations. The morning session of the workshop was organized around two panels, the first of which focused on models and concepts of disability. The second panel provided overviews of disability trends in childhood, midlife, and late life. The first of the afternoon panels considered disability issues over the human life span, specifically, risk factors for disability late in life and transitions or transfers in care for adolescents and young adults. The other two afternoon panels provided perspectives on the nature and the prevention of secondary health conditions. As noted in the introduction, this summary is based on the presentations and discussion during the workshop and does not necessarily reflect the views of the IOM committee that organized the meeting. The committee is preparing a comprehensive report that will cover a range of issues, including the topics discussed in the workshop. That report, which will include recommendations, should be released in early 2007.

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Workshop on Disability in america A new look: Summary and background papers MODELS AND CONCEPTS OF DISABILITY Presentations Dr. Gale Whiteneck began with a brief history of models of disability. (The paper prepared by Dr. Whiteneck appears in Appendix B.) He noted in particular the seminal contribution of Saad Nagi in differentiating disability-related outcomes at three levels, namely, the organ, the person, and society. Dr. Whiteneck then focused on an assessment of the transition from the International Classification of Impairments, Disabilities and Handicaps (ICIDH) to the International Classification of Functioning, Disability and Health (ICF), which were published by the World Health Organization (WHO) in 1980 and 2001, respectively (WHO, 1980, 2001). ICF and its associated description offered one major conceptual step forward but also one step backward. Drawing on his experience with the classification revision process, Dr. Whiteneck proposed that several additional steps are needed to revise and apply the model. The major step forward with ICF was the inclusion of physical, social, and other environmental factors that interact with an individual’s health conditions and other characteristics to produce outcomes, including activity (defined as the execution of a task or action by an individual) and participation (defined as an individual’s involvement in a life situation). This step was consistent with the recommendations of the IOM committees in 1991 and 1997 (IOM, 1991, 1997) and also with the provisions of the Americans with Disabilities Act (ADA; P.L. 101-336), which became law in 1990. Other improvements in the classification involved the incorporation of neutral as well as negative ways of describing an individual’s status. For example, the ICF model uses the neutral phrase “body function and structure” as well as the term “impairment” and includes the term “activity” as well as “activity limitation.” The revised model also emphasized the complexity of possible interactions among its components (e.g., as shown by the two-way arrows rather than one-way “causal” arrows in the model’s graphic representation). The step backward with ICF was the blurring of the conceptual distinctions between activity and participation (and between activity limitations and participation restrictions). Rather than identifying certain difficulties as activity limitations and other difficulties as participation restrictions, ICF grouped them together in a single list. Among the many differences between the two concepts, the foremost is that activity (e.g., walking) operates primarily at the person level, whereas participation (e.g., working) operates at the social and societal level. Activities are generally simpler than participation, and participation is more dependent on environmental factors than

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Workshop on Disability in america A new look: Summary and background papers activity. Participation also appears to be more relevant to the individual’s quality of life. Dr. Whiteneck proposed that a first step in future revisions of ICF should be to distinguish between the elements of activity and the elements of participation. Such distinctions would be particularly useful in helping to understand and respond to environmental barriers to participation. Dr. Whiteneck emphasized the complexity of linkages between environmental factors and participation. For example, those who have higher levels of social participation may report higher levels of environmental barriers because they encounter and perceive more such barriers than those who participate less. In addition to distinguishing between difficulties with activities and difficulties with participation, Dr. Whiteneck offered six additional steps to complete the ICF. These steps were to add quality of life (an individual’s subjective assessment of his or her overall well-being) to the ICF model as recommended by the 1997 IOM report; provide more theoretical and empirical specificity about the nature and complexity of environmental factors as they affect participation; identify and assess personal factors, including psychological and behavioral characteristics, that affect activity and participation; refine the graphic representation of the model so it would better help people to understand and use the model’s concepts and relationships; develop a research strategy, including better measures and data resources, to test the model and its complex set of interrelations; and design and test interventions that are consistent with the model to assess whether they improve the lives of people with disabilities. In the second presentation, Dr. Rune Simeonsson noted his agreement with Gale Whiteneck’s discussion of ICF and his conclusions. He then highlighted current issues in defining and classifying disability among children and youth. (The paper prepared by Dr. Simeonsson appears in Appendix C.) He emphasized the need to move beyond classifications designed solely for health care to those applicable to educational and other service systems. Dr. Simeonsson also argued that we can learn from history, specifically, the evolution of models and concepts of disability across different disciplines. Dr. Simeonsson reviewed historical models of child disability, emphasizing the transactional model of Sameroff and Chandler (1975). The premise of the transactional model is that outcomes for children with disabilities result not only from an initial cause—for example, having genetic syndrome—but also result from ongoing “transactions” in the child’s life,

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Workshop on Disability in america A new look: Summary and background papers including medical and educational interventions intended to improve outcomes. Both nature and nurture contribute. Among the top current issues or challenges in conceptualizing, modeling, and measuring childhood disability are the changes in functional capacities that occur as children develop and the scientific complexity of differentiating developmental delay from impairment. Children are “moving targets.” What defines normal development in a two-year old is very different from that in a four-year old or a 14-year old. For very young children, their developmentally limited verbal and behavioral repertoires complicate assessments. The interviews and self-report tools that are frequently used with adults are not appropriate. Dr. Simeonsson noted that additional challenges are presented by the inconsistency and arbitrariness of language used to describe disabilities and the lack of uniformity in how government agencies and service systems identify and categorize children with disabilities. He noted that some programs work more from a medical model and focus on diagnostic categories, whereas others—consistent with a social model of disability—focus on functional abilities and limitations, which is consistent with the ICF model. Dr. Simeonsson suggested a number of priorities for researchers and policymakers. These include adoption of the version of the ICF for children and youth (ICF-CY), when it is completed; and development of measures of human functioning that operationalize all the components of the ICF for adults and children. implementation of uniform concepts of child functioning and disability for health, education, and related services nationally and internationally; and identification and refinement of developmentally relevant measures risk indicators for disability among children. In her presentation, Dr. Julie Keysor tackled the question raised by both earlier speakers: how does the environment influence social participation and disability? In the absence of data on participation and participation restrictions, she focused on conceptual work and research related to mobility limitations and the environment. (The paper prepared by Dr. Keysor appears in Appendix D.) Dr. Keysor reviewed several conceptual frameworks, beginning with ICF. The ICF explicitly mentions three general environmental domains: the physical, the social, and the political (WHO, 2001). It also identifies specific aspects of the environment that should be considered in research, policy, and other work: (1) products and technology; (2) natural and

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Workshop on Disability in america A new look: Summary and background papers human-made changes; (3) social support and relationships; (4) attitudes of other people; and (5) services, systems, and policies. Dr. Keysor noted that the Quebec Group (Fougeyrollas and colleagues) has identified generally similar environmental factors ranging from the political-economic (e.g., public policies) to the socio-cultural (e.g., attitudes and norms) to the physical (e.g., natural or built features of the environment) (see, e.g., Fougeyrollas, 1995 and Fougeyrollas et al., 1997). Shumway-Cook, Patla and colleagues (2002) have elaborated specifically on aspects of the physical environment that influence mobility. They have identified eight dimensions related to distance, terrain, time (e.g., time to cross a street), physical load (e.g., carrying objects), need for postural transitions (e.g., change of direction), crowding or density, attentional demands (e.g., familiarity of surroundings), and weather and light levels. Dr. Keysor also observed that she and her colleagues, including Alan Jette, have proposed a different way of classifying physical domains (Keysor et al., 2005). Their classification identifies home mobility barriers, community mobility barriers, mobility technology facilitators, communication technology facilitators, and transportation facilitators. Related to these frameworks and others are several measurement instruments that can be used for epidemiological and observational studies. The research challenges are to assess which domains of the environment have the greatest influence on participation or disability and also to identify which elements act as participation barriers and which as facilitators. Dr. Keysor described the Craig Hospital Inventory of Environmental Factors, which was developed by Gale Whiteneck and his colleagues (Whiteneck et al., 2004). This is a self-report instrument that asks people how often in the past 12 months an environmental barrier has been a problem and for an identified problem whether has it been a big problem or a little problem. Other self-report instruments, for example, the Measure of the Quality of the Environment developed by Fougeyrollas and the Quebec group, add a focus on environmental facilitators as well as barriers. Based on her search of the research literature from 1991 to 2005 related to rehabilitation, stroke, spinal-cord injury, and arthritis, Dr. Keysor reviewed the handful of studies relating mobility limitations to environmental factors. In general, these studies found that people with mobility limitations do report facilitators and barriers in their environments and that they try to avoid the barriers. The research findings are, however, not that consistent or strong, and they raise many questions. For example, it is not clear from the research how long environmental effects or perceptions endure. Perhaps people adapt to the barriers they encounter, for example, by finding technologies, social supports, or other means to cope with the barriers, or perhaps they change their perceptions of their environment. Although the growing number of measurement instruments is a plus,

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Workshop on Disability in america A new look: Summary and background papers the lack of consensus on domains of environment presents challenges. The paucity of studies argues for further investigations, especially ones that are prospective and experimental. In addition, researchers need to focus more on how people interact with their environments at work, school, and else-where. Finally, Dr. Keysor seconded Dr. Whiteneck’s call for more emphasis on assessing quality of life and life satisfaction. Discussion One participant noted the lack of use of ICF in framing surveillance and research activities and asked if it is necessary to modify the conceptual framework or just move forward with the research. Dr. Simeonsson responded that one reason for this lack of use is that thus far most of the research relies on preexisting instruments and data sets, although new resources have been developed since the publication of ICF. Drs. Whiteneck and Keysor supported the need for feedback from research use of the models to refine or elaborate on the conceptual and classification model, but they said that it is not necessary to wait for the perfect model. ICF can be used now. In a similar vein, another participant wondered—given the different meanings of words to different people—whether or not the limits of communication have been reached and whether it should just be recognized that there is noise and uncertainty in the use of these concepts. One participant probed further the proposal that models of disability incorporate quality of life. Dr. Whiteneck suggested that the best approach would be to keep quality of life in a separate domain and not try to integrate it into all domains of ICF. He argued that the essential aspect is a person’s subjective, overall assessment of well being rather than only health-related quality of life, which tends to dominate now. Dr. Simeonsson noted that quality of life is not isomorphic or perfectly correlated with activity or participation. That is, people with similar limitations in those areas may have very different assessments of their quality of life. The remaining discussion focused on the relation to ICF of particular concepts that have been highlighted in the disability literature. One question involved the implications of all the two-way arrows in the ICF graphic model, including the implications for a life-course perspective and the malleability of health. Dr. Simeonsson responded that the concept of early intervention certainly existed before ICF. Another participant asked where the family fits into ICF. All the panelists agreed that families are a critical part of the environment. Dr. Whiteneck added that involvment in family life is an important dimension of participation but that family structure or behavior can also be an environmental barrier or facilitator of participation. For example, people with traumatic brain injury have cited family attitudes as an important barrier. A final

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Workshop on Disability in america A new look: Summary and background papers question was whether ICF includes the concept of psychological accommodation, in which, over time, people with disabilities change their perspectives about the adequacy of their own functioning and develop a subjective sense of well being that may be quite different from what an outside observer might expect. Dr. Simeonsson responded that he was not sure where it fits into ICF, but there is ample evidence that individuals’ conceptions of what is important in life change as they live with disability. TRENDS IN DISABILITY Presentations Dr. Vicki Freedman, whose task was to discuss trends in late-life disability, reviewed perspectives on the implications of increased life expectancy for morbidity and disability in late life. (Dr. Freedman’s paper appears in Appendix E.) Life expectancy was 68 in 1950 and reached over 77 in 2002. This increase has raised the question: are these extra years of life associated with longer periods of morbidity and disability? Some have predicted increases in late-life morbidity and disability, some have predicted decreases, and others have hypothesized an increase in chronic conditions but a decrease in their progression to disability in late life. Dr. Freedman stressed that disability in late life is a socially-defined concept that reflects the intersection of an older person’s capabilities, their environment, and the nature of the tasks that they wish to accomplish. In practice, most studies of trends in disability among the older population focus on self-reports of difficulty or assistance with activities of daily living (ADLs; e.g., bathing, dressing, and eating) and instrumental activities of daily living (IADLs; e.g., preparing meals and managing money). Ideally, measures and studies would focus not just on activities but also on participation in society (as conceptualized in the ICF) and the environmental factors that limit or assist participation. Dr. Freedman observed that no published epidemiologic studies, at this time, have consistently focused on these other dimensions of disability. The earliest trend analyses for the 1960s and 1970s showed no increase in the levels of disability in old age, but for the 1980s and early 1990s, Manton and colleagues found declines in disability (Manton et al., 1993, 1997). Others, using different data sets, have found conflicting results (Crimmins et al., 1997). A review and evaluation of eight unique surveys that allow trend analysis reported that studies rated fair or good in their methods showed that IADL disability had declined substantially among older Americans (Freedman et al., 2002). Declines have been concentrated in activities central to living independently, for example, shopping, managing money and doing laundry. A technical working group found that there

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Workshop on Disability in america A new look: Summary and background papers were also declines in the number of older Americans who had difficulty with ADLs and who received help with ADLs, but these changes were relatively small. The group found that inconsistencies across previously published survey analyses of ADL trends could be attributed to differences in the wording of the questions, the period of analysis used, age standardization, and the inclusion of the institutional population. Less evidence exists regarding demographic and socioeconomic disparities in trends in late-life disability, and at times the evidence has conflicted. One recent analysis of data from the National Health Interview Survey (NHIS) from 1982 to 2002 shows that racial and ethnic gaps in the need for help with ADLs and IADLs have persisted, and disparities related to education and income gaps appear to be growing (Schoeni et al., 2005). For example, ADL disability has been declining more rapidly for those with higher levels of education and income. Also limited is the research on the causes of the trends in late-life disability. Given the strong negative relation between disability and education in the cross-sectional analyses, the dramatic increase in the educational attainment of the older population can explain some, but by no means all, of the change in rates of disability. One can hypothesize many ways in which education may influence functioning and disability, for example, by influencing the work-related risk of disease, injury, or impairment; the use of the healthcare system; the use of assistive technologies; adherence to medical regimens; and risk-taking behaviors. Disability declines do not appear to be the result of declines in chronic disease. To the contrary, based on self-reports, the prevalence of many chronic diseases has increased, even as their disabling effects have declined. This pattern could reflect improved medical diagnosis and treatments, but studies thus far have yielded little insight. There has been a decline in physical functional limitations (such as the ability to stoop or climb, which are precursors to disability in the simplified linear models of the disablement process), but evidence about trends in cognitive and sensory functioning is mixed. Finally, recent data suggest that the increased use of assistive technology (e.g., for mobility and bathing) has contributed to the decline in people needing help with ADLS. But the role of other modern conveniences not specifically designed for people with disabilities (e.g., direct deposit banking and microwaves) is unclear. Dr. Jay Bhattacharya discussed trends in disability among the U.S. working-age population. (The paper by Dr. Bhattacharya, coauthored by Kavita Choudhry and Darius Lakdawalla, appears in Appendix F.) Will the decreases in rates of disability in old age described by Vicki Freedman in the preceding presentation continue? The answer will depend on trends among the current working-age group, who are the elderly of the future. Dr. Bhattacharya discussed reasons for concern related to the recent worrying

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Workshop on Disability in america A new look: Summary and background papers increases in the rates of obesity, diabetes, and asthma among the working-age population. He also noted that a continuation of recent declines in disability in late life would have positive implications for Medicare’s solvency. Dr. Bhattacharya observed that a challenge in measuring disability among those of working age is that reports of work disability (e.g., difficulty working because of a health problem) may be influenced by public policies, for example, changes in the generosity of disability insurance programs and in the application of the Americans with Disabilities Act. ADL-and IADL-based measures avoid this problem (although they have conceptual and other limitations as measures of disability). The analysis that Dr. Bhattacharya presented used NHIS reports of the need for help with ADLs for 1984 to 1996 and 1997 to 2000. The division of the analysis into two parts reflects changes in the NHIS questions on disability after 1996. For the period from 1984 to 1996, disability rates for the working-age groups increased, but the rates were basically flat in the period from 1997 to 2000. The next step in Dr. Bhattacharya’s analysis was to decompose or separate the trend in disability (i.e., needing assistance with ADLs) from 1984 to 1996 into three components: the change in the prevalence of chronic disease, the change in the probability of being disabled given that a chronic disease is reported, and the change in the probability of being disabled given no chronic disease. To illustrate the results, Dr. Bhattacharya presented data for three ages: 30, 45, and 60 years. (These data were developed using a “data smoothing” technique [described in Appendix F] that adjusts data on people not in these specific age groups, e.g., those one year older or younger, to provide more robust estimates.) For all three age groups, there was a decline in disability among those without chronic diseases. For the 30- and 45-year-old age groups, the data showed an increase in the prevalence of chronic diseases and of disability due to chronic diseases. For these groups, the largest source of disability due to chronic disease was obesity. Those in the 60-year-old age group showed reductions in disability because a substantial decrease in the prevalence of disability among those with chronic illnesses offset a smaller increase in the prevalence of such illnesses. Although 60-year-olds with chronic disease showed decreased disability overall, the increase in obesity was a major countervailing influence in this group. Beyond the increased prevalence of obesity in the two younger age groups, other highlights were as follows: for 30-year-olds, increased disability related to heart disease and the combination of heart disease and obesity; for 45-year-olds, increased disability among those with hyperten-

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Workshop on Disability in america A new look: Summary and background papers sion, chronic obstructive pulmonary disease (COPD), and obesity combined with diabetes; and for 60-year-olds, an increased prevalence of asthma combined with COPD, heart disease combined with stroke, and obesity combined with diabetes (despite a decrease in obesity alone) and decreases in disability related to many chronic conditions but increased disability because of COPD and stroke combined with hypertension. In concluding, Dr. Bhattacharya stressed the increase in obesity among the working-age population and the increase in disability rates among the younger segments of this population. Noting that he was speculating, Dr. Bhattacharya concluded by observing that the data suggest that the United States may not see a continuing decline in disability among those over age 65 as the current working-age population enters old age. In the final presentation of the morning, Dr. Ruth Stein discussed trends in disability in early life. She began by reviewing demographic trends, including the growth and increasing racial and ethnic diversity of the child population in the United States. She also highlighted the strong association between poverty and poor health among children. (Dr. Stein’s paper appears in Appendix G.) Dr. Stein argued that the two traditional measures of disability used for adults, namely, work disability and ADLs-IADLs, do not apply well to developing children, and to young children, in particular, for whom independence in activities is not expected. Instead of these measures, limitations in other activities, such as school and play, have been assessed, although very few children are not able to play. Dr. Stein presented data on activity limitations among children from a variety of sources that have used different questions about disability or activity limitations. As reported by Newacheck and colleagues (1986), the prevalence of activity limitations among children under 18 years old rose from less than 2.0 percent in 1960 to about 3.5 percent in 1980. More recent data from NHIS show increases to greater than 6.0 percent in 2000 (Child Trends Data Bank, 2005). Most of this activity limitation is related to participation in special education, which is more common among boys than girls. Supplemental Security Income enrollment for children, which primarily involves those in poverty, has increased. This increase reflects the addition of the mental health conditions list to the program’s eligibility categories and a 1990 Supreme Court decision (Sullivan v. Zebley) that broadened the eligibility criteria. For childhood disability, major measurement challenges include the lack of an appropriate baseline measure of normal function against which functional deficits can be assessed. Across different parts of society, wide

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Workshop on Disability in america A new look: Summary and background papers variations exist in what is viewed as “normal” childhood physical and mental development. Another complexity is presented by the increasing recognition that the core tasks of childhood are development and maturation rather than playing or going to school per se. Dr. Stein cited a recent IOM report (joint with the National Research Council) on children’s health that stressed this point (NRC/IOM, 2004). She argued that it is important to investigate chronic conditions in early life that lead to disability in both childhood and adult life. It is likewise important to understand better the consequences of those conditions, such as a dependence on compensatory mechanisms or the use of services above the usual levels for the age group. Dr. Stein reviewed the tools that have been developed to operationalize concepts of child health and disability. Based on one of those tools, the 1994–1995 NHIS Disability Supplement, 14.8 to 18.0 percent of children were identified as having special health care needs and about 50 percent of that group had functional limitations. The proportions of children affected increased with increases in age and poverty. Dr. Stein also noted indirect evidence of overall trends determined from measures of particular child health problems. On the positive side, the rate of lead poisoning has declined substantially during the last 25 years, and the use of folic acid antenatally has been associated with declines in the numbers of children born with spina bifida and anencephaly since 1996–1997. On the negative side are increases in asthma rates and rates of the low birth weight and preterm births since the 1980s. Racial and ethnic disparities in infant mortality rates continue. Also troubling is the increase in the proportion of children ages 6 to 19 years who are obese from less than 5 percent in the mid-1960s to almost 15 percent in 1999–2000. Minority children are especially affected. Dr. Stein closed by suggesting that if the goal is to minimize lifetime disability, then there is need for a conceptualization of disability for the young that is broader than the most severe degree of limitation. She pointed out that the genomic revolution is allowing the much earlier identification of children who are at biologic risk of later disability. It is, thus, providing an opportunity for early intervention to limit the progression or consequences of genetic conditions before they cause observable problems. If we enlarge the focus of disability policies beyond children and adults who are already severely disabled, the growing number of effective preventive strategies can be better applied. Discussion Several questions during the discussion focused on data and methodology issues. One question was whether there were data sets that would allow investigation of disability trajectories for those with child-onset conditions

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Workshop on Disability in america A new look: Summary and background papers how they should invest their limited energy in exercise. The identification of interventions for which underlying biological mechanisms of effect have been identified should also help people make decisions about intervention options. More generally, bringing together what is known in the basic sciences with what is known in applied or clinical sciences and epidemiological sciences is important, and real opportunity exists in this area. One example involves research on the biology of muscle contractures among people with limited mobility, a secondary condition that is a major focus of clinical prevention and management efforts. If scientists could identify the molecular switch that causes fibrous ingrowth into muscle, then ways to control that switch and prevent contractures from forming in the first place might be found. A further research area with considerable promise involves the interaction between exercise-patterned activity and pharmacological options. For example, investigators studying rats have found that amphetamine does nothing by itself to rehabilitate a rat and that exercise has some effect, but amphetamine in combination with exercise potentiates the effect of exercise dramatically. Although it is difficult to do these types of studies with humans, the potential of such pharmacological strategies to improve the outcomes of exercise interventions is significant. One participant noted the importance of both social and personal responsibility for improving the health and well-being of people with disabilities. There is a social responsibility—which has been greatly inadequate in practice—to provide individuals with access to services and technology that allow them to function better and participate in the community. In addition, people with and without disabilities have a personal responsibility to lead the healthiest lives possible, for example, by looking after their diet, exercise, and similar elements important to health. Persuading people to adopt health-promoting practices and supporting them in that effort are, unfortunately, difficult tasks, whether the focus is on people with disabilities or not. Another concern with health promotion is access by children with disabilities to school physical education activities. These activities provide opportunities for learning good health behaviors and improving physical fitness that can have both short-term and long-term benefits. Education and health personnel need to coordinate their attention to the benefits of school physical education, the barriers encountered by children with disabilities, and the options for overcoming these barriers. The discussion for this panel ended with an expression of concern about an impending crisis with Medicare, Medicaid, and private insurance programs. The result could be potentially dangerous reductions in financial access to services and equipment for people with disabilities. Monitoring the allocation of health care dollars will be important.

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Workshop on Disability in america A new look: Summary and background papers SECONDARY HEALTH CONDITIONS: PART II Presentations Dr. William Bauman discussed secondary conditions in the context of spinal cord injury. (Dr. Bauman’s paper appears as Appendix M.) His presentation covered pulmonary, cardiac, metabolic, gastrointestinal, and dermatologic secondary conditions. Dr. Bauman recalled that when he made his first presentation on this topic at a conference in 1990, the audience did not at that time appreciate the importance of understanding secondary conditions as problems. Now the topic is firmly established in the field of spinal cord medicine. As in the broader population, heart disease and lung disease are common causes of mortality and morbidity for people with spinal cord injuries. Individuals with spinal cord injuries have restrictive ventilatory dysfunction, and those with higher cord lesions also show evidence of airflow obstruction. The higher the spinal cord lesion, the greater the effect on respiratory muscles and the more difficulty people have breathing and coughing effectively. The tubes in the lung can become blocked, causing infection. Research has helped identify the level of impaired expiratory function that begins to cause problems. Whatever the technique—mechanical, pharmacological, electrical, or other—used to help people breathe better, it is important to mitigate this important contributor to mortality and morbidity. Initially, some of the secondary complications for people with chronic spinal cord injury were not recognized because patients often did not survive long term. With improvements in long-term survival has come recognition of excess heart disease deaths in this group. One contributor to these excess deaths is the predisposition of individuals with spinal cord injuries to the metabolic syndrome. People tend to develop insulin resistance, become obese, and develop carbohydrate and lipid abnormalities—in particular, low levels of high-density lipoprotein (HDL) or “good” cholesterol. Those with lower cord lesions also tend to have elevations in blood pressure. Data from the Framingham (Massachusetts) Heart Study demonstrate the health risks of low levels of HDL. For every 1-milligram-per-deciliter rise in the HDL cholesterol level, the risk of a cardiac event decreases by about 2 or, possibly, 3 percent (Castelli et al., 1986). For those with spinal cord injuries, the role of low-density lipoprotein (LDL), or “bad” cholesterol, is more complex, but evidence suggests that these individuals have smaller, denser, more atherogenic LDL particles, which is a risk factor beyond the actual LDL level itself. Another risk factor related to the metabolic syndrome involves changes in body composition and insulin resistance. In people with spinal cord injuries, such changes occur both immediately and chronically. In general,

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Workshop on Disability in america A new look: Summary and background papers the less active that a person is and the greater their level of body fat, the greater their extent of insulin resistance is. The mechanisms for these changes appear complex, possibly including (in addition to paralysis and immobilization) a reduction in anabolic forces and an elevation of catabolic hormones. In addition, those with the greatest neurologic impairment have the lowest frequency of normal glucose tolerance. Management options for prevention of the development of diabetes and heart problems include increased activity, dietary changes, smoking cessation, and drug therapies. Some evidence suggests that even a small increase in the amount of exercise performed may be beneficial. Given the difficulty, cited earlier, in engaging people in exercise, this is encouraging. Dr. Bauman went on to describe other secondary problems associated with spinal cord injury, one of which is difficulty with evacuation related to their injury. Bowel care is time-consuming, and shortfalls in such care increase morbidity. Cholinergic agents are effective but have adverse effects on the heart and on the lung. One promising area is combination drug therapy that selectively blocks these adverse effects. Osteoporosis is another serious secondary problem. Losses in bone density occur very rapidly after injury and continue for years. It is particularly crucial to prevent bone loss immediately after the injury to avoid a compromised bone architecture that cannot be restored. Preventive strategies include drug and mechanical interventions. Vitamin D deficiency is also important in individuals with spinal cord injuries. More remains to be learned about vitamin supplementation strategies to prevent or limit osteoporosis in this group. Overall, more effective therapies to prevent or treat bone loss would improve employment prospects and other kinds of social participation. Pressure ulcers are a tremendous source of morbidity in those with spinal cord injury and in the general population—probably costing about $8 billion to $10 billion a year nationwide for all care provided for this condition. Again, much remains to be learned about the development of pressure ulcers; rates of ulcer healing; and the roles of nutrition, inflammatory, and endocrine factors. Dr. Bauman noted that the Veterans Administration had funded a cooperative study to compare treatment with an oral anabolic agent against a placebo (each in combination with optimal clinical care) and assess the effects on the percentage of complete healing for pelvic region pressure ulcers. We will also learn more about the effects on healing rates of nutrition, inflammatory factors, and endocrine factors. Dr. Bauman observed that most individuals with spinal cord injuries have learned to adapt to being paralyzed. In many respects, the secondary complications of the injury may have a greater impact on a person’s quality of life than the loss of ambulation itself. The knowledge gained from study-

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Workshop on Disability in america A new look: Summary and background papers ing the secondary consequences of spinal cord injuries can probably be transferred in large measure to other immobilizing conditions. Prevention and early intervention are important both to people’s quality of life and to the costs of health care. For the next presentation, Dr. Bryan Kemp spoke about depression in adults with disabilities. (Dr. Kemp’s paper appears as Appendix N.) Whether depression should be categorized as a secondary condition or something else, it has important consequences for health and well-being. It is also a common and expensive problem for the population generally and affects every aspect of life: physical health, behavior, functioning, participation, interpersonal relations, and more. Data indicate that depression is more common in people with disabilities and, in some respects, is more serious in this group. Compared with the rates of depression among people with no disability, the rates of depression among those with post-polio syndrome, rheumatoid arthritis, cerebral palsy, spinal cord injury, or stroke have been reported to be higher. Perhaps 1 person in 10 or 12 overall has a depressive disorder that warrants treatment. Among people with disabilities, the number is more like 1 person in 3 or 4. Depression affects health and well-being both directly and indirectly because it reduces important brain transmitters as well as compliance with exercise and other health promotion activities and diminishes participation and social connections. One study of people with stroke reported that the 10-year survival rate was about 65 percent for those without depression but only about 30 percent for people with depression (Morris et al. (1993). Studies of change in functioning over time for people with disabilities report that depressed individuals show greater rates of decline than individuals without depression. Dr. Kemp explained that the effects of aging present additional concerns for those with certain kinds of disabilities and increase the risk of depression. About 25 years after the onset of a disability (in a younger person) or at about 45 years of age (seemingly, whichever comes first), people begin to develop an inordinate number of new medical and function-related problems as well as pain, fatigue, and weakness. These changes are associated with higher rates of depression. The literature supports some general statements about the causes of depression in people with disabilities. It does not appear to be directly related to the severity of the impairment; for example, more severe spinal cord injuries are not associated with higher rates of depression. Depression also does not appear to be related to the duration of impairment. Dr. Kemp suggested that depression is most likely related to a person’s ability to cope with the changes and losses that are associated with a

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Workshop on Disability in america A new look: Summary and background papers disabling condition rather than to the existence of the condition per se. Studies also suggest that depression in people with disabilities is related to their financial status, level of social support, and other resources. For example, a study by Dickens and Creed (2001) reported a substantial increase in depression among people with disabilities who reported the loss of valued social or family activities. Several factors seem to account for the inadequate treatment of depression in people in the community who have a disability. Lack of access to care is an important factor. In addition, symptoms of depression (such as fatigue) often overlap with symptoms of other health problems or disability effects. Some symptoms, such as apathy or irritability, may be missed by health care professionals who focus on feelings of sadness. Further, if professionals believe that depression is normal for people with disabilities, they will tend to undertreat it. Dr. Kemp noted that long-term studies of treatment for depression among individuals living in the community are limited and that relatively few controlled treatment studies have been conducted. He reported that his group’s quasiexperimental studies of combined pharmacotherapy and psychotherapy suggest that treatment for depression can be effective in several respects (Kemp et al., 2004). The group found that treatment reduced the level of depression and increased community participation; subsequently, people reported increased life satisfaction. Many important areas for research remain. Some involve the better measurement of depression and outcomes in people with disabilities. Others relate to the short-term and long-term effectiveness of different treatment strategies, for example, comparison of early and late interventions and of different durations of therapies. Dr. Tom Seekins made the final presentation, which covered secondary conditions among people with intellectual or developmental disabilities. This group numbers about 2 million to 4 million people in the United States. Estimates indicate that more than 350,000 adults with such disabilities live in more than 110,000 supported arrangements around the country. (The paper of Dr. Seekins and his colleagues, which appears as Appendix O, includes an updated estimate that over 420,000 adults with developmental disabilities live in over 148,000 such arrangements nationwide.) Dr. Seekins described a community-based intervention strategy—a wellness club—that was designed for the target population and community. The strategy employed a surveillance model and instrument to support the planning and assessment of wellness services within the larger context of community-based services for people with developmental disabilities. First steps were the initiation of annual surveillance of health status at the community level and the evaluation of surveillance results at the state level, which provided the basis for setting priorities and mobilizing resources for

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Workshop on Disability in america A new look: Summary and background papers changes at the local level. The surveillance instrument asked people to rate 45 secondary conditions. Using the responses, the investigators created a problem index based on the reported prevalence and the average reported severity. Data were also collected on 36 behavioral risk and protective factors and medical service utilization. In the survey, the top three problems measured by the problem index were communication difficulties, physical conditioning problems, and weight problems. For those people reporting a problem, however, mobility problems had the highest average severity level. Among the risk factors for problems were stressful life changes, living arrangements, and turnover of personal assistance. Behavioral risk factors included inadequate physical activity and poor dietary habits. Dr. Seekins also discussed the design of individual service plans for adults with developmental or intellectual disabilities who are living in supported arrangements in the community. Individual service plans, which are required by law, guide the provision of services for consumers and provide the blueprint for organizing the treatment environment. Dr. Seekins noted some positive preliminary findings that suggest that individual service plans that took a secondary condition into account were associated with more declines in problems than plans that did not, but no well-designed controlled studies have been conducted. The individual service plan directs the activities of personal assistants, who are critical environmental elements. Again, preliminary findings suggest that turnover and change involving assistants are risk factors for secondary conditions. Also, the worse that the condition is initially, the larger the effect is. Dr. Seekins’ group is also looking at the impact of nutrition with a study in group homes that analyzed the home’s menus and pantry contents for consistency with the formal nutrition plans for residents. They did not find a good match. An analysis of oral health arrangements in the homes showed a better match between these arrangements and the individual service plans. Such analyses provide only snapshots of a person’s overall situation. As described by Dr. Seekins, the “wellness club” approach is designed to be comprehensive by integrating wellness goals into the individual planning process on an ongoing, annual basis. The approach covers healthy home environments, the individual’s health and lifestyle, assessment procedures for identification of the individual’s needs and priorities, staff instruction, and methods for program and progress evaluation. The club strategy is also designed to provide participants a sense of belonging to something that is fun. The approach is being pilot tested in Montana and Kansas. The formal evaluation process is just beginning.

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Workshop on Disability in america A new look: Summary and background papers Discussion The discussion began with a question about depression as a primary condition that can be disabling and that may also give rise to secondary conditions. Dr. Kemp agreed that depression can certainly be a primary condition as well as a secondary condition and that it may be complex to sort this out for an individual patient. The identification of coexisting or primary depression and the assessment of prevention and management needs in this context are important. Another question arose about the risk factors for depression as a secondary condition. Part of Dr. Kemp’s response emphasized the importance of positive social relationships and, conversely, the potential for negative relationships to increase secondary depression. Also important are personal attitudes and appraisals; for example, self-blame for a disabling injury is associated with the development of depression. One participant stressed the importance of considering behavioral health issues, noting that the primary disabling condition for 60 percent of Medicaid recipients is some kind of severe and persistent mental health problem. Also, for children and families, learning disabilities can be described as hidden disabilities because they may not be obvious. It may be difficult to convince people that a cognitive processing deficit or other learning condition exists, that it may not be susceptible to medical treatment, and that it will persist into adulthood with all sorts of possible negative consequences, including incarceration. These observations prompted further discussion of the attitudes and expectations of health care professionals, for example, whether they consider depression to be a normal consequence of disability and then, to some extent, discount it or overlook it as a preventable and treatable source of distress and suffering that can complicate many aspects of care management. Dr. Kemp suggested that professionals who routinely care for people with disabilities are sensitive to depression as a potential problem and may evaluate an individual for depression when functional or other problems seem to be occurring or persisting to an extent that is not anticipated, given other aspects of the individual’s medical, treatment, and personal circumstances. The chair asked if there were any general comments. One participant noted the changing profile of the American population and the increasing significance of immigrants. This development has implications and presents challenges for the provision of services to people with disabilities. Another concern is emerging disabilities or the transformation of diseases such as AIDS into chronic conditions for which people require rehabilitation or other assistance. The role of cognitive limitations was raised again with the observation that such limitations were far more common in connection with traumatic brain injury and other conditions than many of the prob-

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Workshop on Disability in america A new look: Summary and background papers lems discussed in the workshop. A related question was what to do about disabling conditions that “come out of left field,” with autism offered as an example. One participant stated that the evidence base for understanding, preventing, and mitigating disabling conditions is getting stronger. She also cited a series of meetings that are being sponsored by the Agency for Healthcare Research and Quality and the Robert Wood Johnson Foundation to discuss alternative study designs to strengthen and promote research on these and other conditions. Given the practical and ethical challenges of conducting randomized, double-blind clinical trials, it is important to consider observational and other studies at the same time that efforts are made to improve the methods and tools for such studies. The capacity to undertake rehabilitation research is also relevant. Adequate funding for the support of such research is part of the picture, but more fundamental aspects of the research capacity or infrastructure may need attention. A different research issue relates to the data used to describe and assess the delivery of rehabilitative services. The data in this area are much poorer than the data for emergency room services or physician office visits. With respect to longitudinal data, one participant encouraged the committee to look at the National Children’s Study (sponsored by the National Institute on Child Health and Human Development and the Centers for Disease Control and Prevention, among other agencies).1 It may eventually generate long-term data relevant to secondary conditions and other problems discussed at the workshop. Questions were raised about the extent to which an IOM study would examine problems that are not related primarily to health care, such as access to employment. Certainly, participation as a concept is itself not primarily medical. Likewise, the creation or modification of the built environment is not primarily a health care function, but that environment is very important not only to the participation of people in society but also to the maintenance of mobility and the prevention of mobility decline in people with chronic conditions. Schooling is another important arena that offers opportunities for prevention and health promotion. The vulnerability of people with disabilities to physical or mental abuse by caregivers (which may range from the withholding of prostheses to sexual violence) is a further cross-cutting environmental issue. For example, inadequacies in adult protective services, inappropriate placements of people with certain kinds of disabilities, and a lack of treatment or protection in settings such as jails create conditions for abuse. 1   Information of this study can be found online at http://www.nationalchildrensstudy.gov/about/mission/index.cfm.

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Workshop on Disability in america A new look: Summary and background papers One participant cautioned against getting too preoccupied with theoretical or conceptual models to the extent that attention is diverted from significant practical and policy issues. The experiences of the two earlier IOM committees and those involved with WHO and ICF suggests that such a preoccupation is a likely—and difficult to avoid—hazard. In a final observation, another participant urged the IOM committee not to forget the personal dimension, the direct experiences of people living with disabilities. REFERENCES American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine. 2002. A consensus statement on health care transition for young adults with special health care needs. Pediatrics 110:1304–1306. Castelli WP, Garrison RJ, Wilson PWF, Abbott RD, Kalousdian S, Kannel WB. 1986. Incidence of coronary heart disease and lipoprotein cholesterol levels: the Framingham Study. Journal of the American Medical Association 256:2835–2838. Child Trends Data Bank. Available online at www.childtrendsdatabank.org. (Last accessed November 21, 2005.) Crimmins EM, Saito Y, Reynolds SL. 1997. Further evidence on recent trends in the prevalence and incidence of disability among older Americans from two sources: the LSOA and the NHIS. Journals of Gerontology 52(2):S59–S71. Dickens, C, Creed, F. 2001. The burden of depression in patients with rheumatoid arthritis. Rheumatology 40:1327–1330. Fougeyrollas P. 1995. Documenting environmental factors for preventing the handicap creation process: Quebec contributions relating to ICIDH and social participation of people with functional differences. Disability and Rehabilitation 17(3-4):145-53. Fougeyrollas P, Noreau L, St Michel G. 1997. Measure of the quality of the environment. ICIDH and Environmental Factors International Network 9(1):32-39. Freedman VA, Martin LG, Schoeni RF. 2002. Recent trends in disability and functioning among older adults in the United States: a systematic review. Journal of the American Medical Association 288(24):3137–3146. Guralnik JM, LaCroix AZ, Abbott RD, et al. 1993. Maintaining mobility in late life. I. Demographic characteristics and chronic conditions. American Journal of Epidemiology 137:845–857. IOM (Institute of Medicine). 1991. Disability in America: Toward a National Agenda for Prevention. Washington, DC: National Press Academy. IOM. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: National Academy Press. Kemp BJ, Kahan JK, Krause JS, Adkins RH, Nava G. 2004. Treatment of major depression in individuals with spinal cord injury. Journal of Spinal Cord Medicine 27:22–28. Keysor J, Jette A, et al. 2005. Development of the home and community environment (HACE) instrument. Journal of Rehabilitation Medicine 37(1):37–44. Leveille SG, Guralnik JM, Hochberg M, Hirsch R, Ferrucci L, Langlois J, Rantanen T, Ling S . 1999. Low back pain and disability in older women: independent association with difficulty but not inability to perform daily activities. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences 54(10):M487–M493. Lollar DJ. 1994 (February 17-19). Preventing Secondary Conditions Associated with Spina Bifida or Cerebral Palsy: Proceedings and Recommendations of a Symposium, Crystal

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Workshop on Disability in america A new look: Summary and background papers City, Virginia. Washington, DC: Spina Bifida Association of America. Available online at http://www.cdc.gov/ncbddd/dh/Publications/Conferences/1994aSB_CP/1994aTableofContents.htm. (Last accessed September 26, 2005.) Lotstein D, McPherson M, Strickland B, Newacheck P. 2005. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics 115:1562–1568. Manton KG, Corder LS, Stallard E. 1993. Estimates of change in chronic disability and institutional incidence and prevalence rates in the U.S. elderly population from the 1982, 1984, and 1989 National Long Term Care Survey. Journals of Gerontology 48(4):S153–166. Manton KG, Corder L, Stallard E. 1997. Chronic disability trends in elderly United States populations: 1982–1994. Proceedings of the National Academy of Sciences 94(6):2593–2598. Marge, M. 1988. Health promotion for persons with disabilities moving beyond rehabilitation. American Journal of Health Promotion 2(4):29–35. Morris PLP, Robinson RG, Andrzejewski MS, Samuels J, Price TR. 1993. Association of depression with 10-year post-stroke mortality. American Journal of Psychiatry 150: 124–129. Newacheck PW, Budetti PP, Halfon N. 1986. Trends in activity-limiting chronic conditions among children. American Journal of Public Health 76:178–184. NRC/IOM (National Research Council and Institute of Medicine). 2004. Children’s Health, the Nation’s Wealth: Assessing and Improving Child Health. Washington, DC: The National Academies Press. Sameroff AJ and Chandler MJ. 1975. Reproductive risk and the continuum of caretaking casualty. In Horowitz FD, Hetherington M, Scarr-Salapatek S, and Siegel G, eds. Review of Child Development Research, Vol 4, pp. 187–244. Chicago: University of Chicago Press. Schoeni R, Martin L, Andreski P, Freedman V. 2005. Growing disparities in trends in old-age disability 1982–2001. American Journal of Public Health 95(11):2065-2070. Shumway-Cook A, Patla AE, Stewart A, Ferrucci L, Ciol MA, Guralnik JM. 2002. Environmental demands associated with community mobility in older adults with and without mobility disabilities. Physical Therapy 82(7):670-81. Surgeon General of the United States. 2005. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. Washington, DC: U.S. Department of Health and Human Services. Available online at http://www.surgeongeneral.gov/library/disabilities/calltoaction/calltoaction.pdf. (Last accessed September 26, 2005.) Verbrugge LM, Jette AM. 1994. The disablement process. Social Science Medicine 38(1): 1–14. Volpato S, Blaum C, Resnick H, Ferrucci L, Fried LP, Guralnik JM. 2002. Women’s Health and Aging Study. Comorbidities and impairments explaining the association between diabetes and lower extremity disability: The Women’s Health and Aging Study. Diabetes Care 25(4):678–683. Whiteneck G, Gerhart KA, et al. 2004. Identifying environmental factors that influence the outcomes of people with traumatic brain injury. Journal of Head Trauma Rehabilitation 19(3):191–204. WHO (World Health Organization). 1980. International Classification of Impairments, Disabilities and Handicaps: a Manual of Classification Relating to the Consequences of Disease. Geneva, Switzerland: World Health Organization. WHO. 2001. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization.

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