Appendix A
Population Survey Measures of Functioning: Strengths and Weaknesses*

Barbara M. Altman

INTRODUCTION

Thomas (2002) has pointed out that “disability” is a common term whose meaning is seen as beguilingly obvious to the layperson—not being able to do something. However, the legislative use of the term in policy and the scientific use of the term in medical, rehabilitation, or welfare settings to define the relevant population is fraught with shades of meaning that vary according to the purposes of those activities. Meaning is also influenced by the way people conceptualize and measure within those purposes. These multiple, as well as different, approaches to the understanding of the terms of discussion obscure theoretical definitions and confuse communication when one tries to examine the big picture.

Since scientific disciplines tend to work within the bounds of their own literatures, terminology, and models, these variations in definition, measurement, and meaning persist. The history of the involvement of many disciplines in the development of policy and programs to address disability issues—medicine, education, social work, psychology, sociology, vocational counseling, occupational and physical therapy, and others—sets the stage for attempts at conceptual distinctions to delineate measures of the disability process (Nagi, 1991). Importantly, even when definitional components are generalized and accepted across fields (such as with the International

*

The author gratefully acknowledges the meaningful input on conceptualization, organization, and editing provided by Julie Weeks of the National Center for Health Statistics of the Centers for Disease Control and Prevention.



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Appendix A Population Survey Measures of Functioning: Strengths and Weaknesses* Barbara M. Altman INTRODUCTION Thomas (2002) has pointed out that “disability” is a common term whose meaning is seen as beguilingly obvious to the layperson—not being able to do something. However, the legislative use of the term in policy and the scientific use of the term in medical, rehabilitation, or welfare settings to define the relevant population is fraught with shades of meaning that vary according to the purposes of those activities. Meaning is also influenced by the way people conceptualize and measure within those purposes. These multiple, as well as different, approaches to the understanding of the terms of discussion obscure theoretical definitions and confuse communication when one tries to examine the big picture. Since scientific disciplines tend to work within the bounds of their own literatures, terminology, and models, these variations in definition, measurement, and meaning persist. The history of the involvement of many disciplines in the development of policy and programs to address disability issues—medicine, education, social work, psychology, sociology, vocational counseling, occupational and physical therapy, and others—sets the stage for attempts at conceptual distinctions to delineate measures of the disabil- ity process (Nagi, 1991). Importantly, even when definitional components are generalized and accepted across fields (such as with the International * The author gratefully acknowledges the meaningful input on conceptualization, organiza- tion, and editing provided by Julie Weeks of the National Center for Health Statistics of the Centers for Disease Control and Prevention. 

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00 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY Classification of Functioning, Disability and Health [ICF]), measurement of those components in terms of disciplinary practice reintroduces differ- ent shades of meaning and alters the conceptual definition in subtle but specific ways. The purpose of this paper is threefold. First, I explore the disability conceptualization/measurement continuum in the area of population sur- veys, to locate it within the general theory of disability and to compare it across specialty areas of application. Second, I define and locate the source and types of measurement for the variety of theoretical concepts associated with the disability process. Finally, I reintroduce the important contribution of the social and environmental context not only to the conceptualization of disability, but also to its measurement. THE MEDICAL CONTEXT Among other things, the lay “beguiling” meaning of disability generally locates the source of the problem within individuals, based solely on their physical or mental impairment or imperfection. This personal attribution comes in part from the medical orientation to chronic conditions and the physical or mental impairment consequences of those conditions which focus both diagnosis and treatment on individuals. Although diagnosis and treatment are appropriately directed toward the chronic condition or impairment a person exhibits (consideration of the individual as the host of a problem), locating the larger phenomenon of “disability” within the individual in the same way is inappropriate and misrepresents the situation. There are actually at least three major component areas that contribute to creating a disabling outcome, and none of them is located within the person. The medical model, which has influenced so many of the nation’s disability-related programs, is not so much a separate theoretical model but the primary context in which the available theoretical models have been interpreted through research and applied in programmatic activity. The emphasis is placed on the physical or mental impairment within the person, assuming it is the sole factor that somehow constrains activity and access. The medical model begins in a medical setting, with the emphasis on diagnosis, treatment, and rehabilitation of people as they move from active pathology to impairment. Given the medical orientation, the medical model also is a form of data collection, such that the source of data is a physical examination or observed performance. Following the initial stages of the disability process that grow out of the relationship with medical organizations, disability-related programs, many of which were structured in an earlier time, continue the focus on the individual, ignoring the culpability of society and the environment. So, for

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0 APPENDIX A example, the organization of the Social Security program was focused on re- placing the person’s monetary support base and not on retraining them for a different kind of job or providing a legislative agenda to prevent discrimi- nation in the job market. With the emphasis on replacing income, stringent eligibility criteria, which required medical documentation, were necessary because of the potential long-term costs of the program. Vocational reha- bilitation continued this focus on the person but broadened it to include training, medical care, and therapy—all directed at the person—rather than seeking to remove structural and social barriers by rehabilitating the workplace as well. As early as the late 1980s, individuals and groups were pointing to problems with emphasizing the individual in the disability equation (Caplan, 1988). It was a very hard sell; however, Disability in America (Institute of Medicine, 1991) did give space to the idea. Nonetheless, the emphasis in that groundbreaking work was still the person, not only the conditions causing disability, but also the problem of secondary conditions that could make a disability worse. Because the mandate of that volume was to explore the prevention of potentially disabling conditions from de- veloping into disability at every stage of the disability process, the emphasis was heavily weighted toward what could be done for the person in the medical context, from the prevention of secondary conditions to the use of rehabilitative and vocational services. The contribution of Verbrugge and Jette (1994) in their elaboration of the disability models in use at the time (Nagi, 1965; World Health Organi- zation, 1980) was the beginning of bringing the understanding of the dis- ability process beyond the medical context. Moving the theoretical models beyond the medical context laid the groundwork for also moving the data collection about the process into a social survey context. The expanded 1996 Medical Expenditure Panel Survey and the 1994–1995 National Health Interview Survey on Disability (NHIS-D) solidified that position. They also added nationally representative data on disability, which included broader sets of questions and the whole population, to what had previously been specialty surveys on particular populations, such as Social Security recipients, children, or the aging population. CURRENT CONCEPTUALIZATIONS OF DISABILITY Nagi Model Several models allow us to examine the elements of disability and explore where they are located and how they relate to one another. The original model that gained widespread acceptance was authored by Nagi and included the conceptual elements of pathology, impairment, functional

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0 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY limitation, and disability (Nagi, 1965). Although Nagi never presented his theoretical model in a symbolic format, others have, implying a unidi- mensional progression from pathology to an outcome called “disability.” However, a close and careful reading of the original Nagi theoretical expo- sition (Nagi, 1965) and later works (Nagi, 1969, 1991) can be interpreted somewhat differently, symbolically as well as conceptually. Moreover, key constructs presented by Nagi—role interactions and behaviors—are omit- ted altogether from most secondary interpretations. I have elaborated the symbolic representation accounting for the role interaction situation Nagi originally postulated and emphasizing the individual’s behaviors that fol- low. It is this pattern of behavior that Nagi defined as disability (Altman, 2001b). These conceptual subtleties, which are frequently glossed over, are discussed here. There are several important points to take from the Nagi model that are relevant to the definition and measurement of disability in survey situations (see Figure A-1). First, disability is not the equivalent of an individual’s conditions or impairments, be they pathologies, residual losses, or abnor- malities caused by injury, disease, or congenital accident. Conditions and or impairments are attributes of the individual that eventually affect the nature and degree of disability through their effects on the person’s overall Functional Disability Pathology Impairment Limitation A. Nagi model as depicted by others Interactions Disability Role Pathology Impairments (Behavior) Functional Limitations B. Nagi model as adapted by Altman FIGURE A-1 Two versions of Nagi model. SOURCE: Altman (2001b). SOURCE: Altman (2001b).

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0 APPENDIX A functioning. Rather, disability refers to social outcomes. It is related to performing socially defined roles,1 from self-care to employment, and is shaped by the expectations, reactions, and definitions of people around the “disabled” individual, as well as by the impact of the physical environment. It reveals itself most completely in the behaviors exhibited by an individual in social situations (Nagi, 1965). Although Nagi changed this definition of disability somewhat in later work (Nagi, 1991) to reflect a more social functioning orientation, the broader orientation of his earlier work is used in this paper as well as the later one because of its importance in measurement. Although the differ- ences between “functioning” in a role and “behavior” in a role may seem quite subtle, they are important differences in understanding the full effects of the environmental contribution to disability. Questions based on a func- tioning perspective still locate the problem primarily in the person’s ability to do the activity within the given context, such as being limited in the kind or amount of work or unable to work. Questions about behavior can more accurately reflect the adjustments that are made both by the person and in the context and also reflect the person’s choice in the situation. Functioning reflects assessment of ability or capacity in the general situation, whereas behavior is the manifestation of the actual interaction that creates disability. While functioning in basic actions, such as walking or seeing, is an impor- tant component of the equation at the person level, functioning in the area of a more complex activity, such as working, focuses on the outcome of the person–environment interaction. This latter functioning tells us what the person can do in such a situation or the difficulty they have doing it, but it tells us nothing about how their behavior has been modified to accommo- date the barriers or how the barriers have been modified to accommodate the functional limitation. The strength of the Nagi model lies in its insights about the whole process, which still have relevance after more than 40 years. Two areas are particularly important. First, the recognition of the difference between im- pairment, the damaged organ, cell, or body part, and functioning, actions of the whole person, which focuses the measurement on the person’s capacity rather than the type of condition extant within the person. This differen- 1 This is an example of how disciplinary language and orientations impose subtlely but importantly on a conversation of this type. Nagi is a sociologist, and his work reflects a so- ciological orientation to culture and social roles. The general term social role (or simply role) is used to refer to both a position and its associated behavioral expectations. The role of a person with a functional limitation as understood through the behavioral expectations of the group of which they are a part is a key factor in creating disability.

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0 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY tiation identifies functioning as the fulcrum in the disability process.2 The other area of strength is acknowledgment of the important role that social interaction with friends, family, and the community contributes to defining the situation. Although the physical environment is not mentioned in the original discussion of the model, it is certainly addressed in the study of dis- ability and rehabilitation, the source of the “Nagi questions,” which were written a few years later (Nagi, 1969). The weakness seems to be the lack of further conceptual elaboration of the behavioral component sufficient to provide clues to its measurement. Institute of Medicine Models Two other commonly referenced models are the Institute of Medicine (IOM) model from Enabling America (Institute of Medicine, 1997) and its predecessor from Disability in America (Institute of Medicine, 1991). Both are products of the IOM committee process. Both are based on the Nagi model and the later version is very much influenced by adaptations of the Nagi model by Verbrugge and Jette (1994). The 1997 IOM model depicted in Figures A-2 and A-3 follows the Nagi model concepts closely in the areas of pathology, impairment, and func- tional limitation and collapses some of the Verbrugge and Jette elements of intra- and extra-individual factors into the quality-of-life components (Verbrugge and Jette, 1994). Disability is addressed separately (see Figure A-3) from the overall model to emphasize the interactive nature of its cre- ation and, one assumes, to focus attention on the complexity of a process that is easily ignored. What is indicated clearly in this part of the model is that disability is not inherent in the person, but rather a result of the interaction of the individual and the environment. In other sections of the IOM text, reference is made to adjustments to the physical environment or rehabilitation of the individual, both of which can contribute to modifying the level of disability a person experiences. The strengths of the IOM model include its reinforcement of the Nagi separation of impairment and functioning and the provision of a much clearer presentation of the person–environment interaction that leads to dis- ability. The latter is particularly meaningful for measurement purposes be- cause it broadens the measurement potential beyond individual functioning and an independence–dependence dichotomy—represented by activities of daily living (ADLs) and instrumental activities of daily living (IADLs)—to the person–environment context. The IOM discussion acknowledges the 2 From the author’s perspective it also takes the process out of the medical context so impor- tant for the individual’s health but separate from the social construction of disability that re- sults through interpersonal, organizational, and social activities (Bogdan and Biklen, 1977).

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0 APPENDIX A The Enabling–Disabling Process Transitional Factors Biology Environment Lifestyle and (Physical and Social/ Behavior Psychological) No Functional Pathology Disabling Impairment Limitation Condition Quality of Life FIGURE A-2 Second Institute of Medicine model. SOURCE: Institute of Medicine (1997), adapted from the first model (Institute of Medicine, 1991). Figure A-2, R01582 vector, editable taken from Figure 2, B943, Enabling America

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0 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY Disability is a function of the interaction between the person and the environment. THE "PERSON" (with potentially disabling conditions) Physical Environment Social Environment DISABILITY ENVIR ONMENT The strength/resilience of the flexible mat (environment) is a function of social support, culture, physical barriers, assistive technology, etc. Amount of disability is propor tional to amount of displacement in the mat. Physical Environment Social Environment DISABILITY FIGURE A-3 Complementary component of Institute of Medicine model: Con- ceptual overview of the person–environment interaction and how that interaction creates the disability. SOURCE: Institute of Medicine (1997). Figure A-3, R01582 multidisciplinary characterfrom FigurectorB943, bleofling America by very efficiently ve , edita taken of the 4, studyEnab disability pointing to cultural, psychological, economic, and political questions that need to be addressed (Institute of Medicine, 1997, p. 168). However, al- though the model moved forward an understanding of the process, particu- larly the contribution of the external environment, it lacked insights into actual mechanisms associated with this environment–person interaction. This leaves a gap in the measurement process for environmental elements without a clear direction for the conceptual operationalization process. As with the ICF model that follows, the importance of environment is clear, but where to start the measurement process is vague. International Classification of Functioning, Disability and Health Model ICF (World Health Organization, 2001a) is an extensive revision of the International Classification of Impairments, Disabilities, and Handicaps

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0 APPENDIX A (World Health Organization, 1980), both products of the World Health Organization. This final model of the disability process currently in use (shown in Figure A-4), like the IOM model, does not include the state of “disability” within the outlines of the conceptual relationships. It also does not include the concept of functioning limitation so prominent in the other two models. Disability in this model is an umbrella term for the negative aspects of the interaction between an individual and that individual’s contextual factors, while functioning is the umbrella term used to denote the positive aspects of the interaction between an individual in his or her context. The conceptual elements in this model reflect, for the most part, the elements of body structure and function (identifying the impairment as well as the body system or body part where it is located), activity (which represents a person’s execution of a task or action—the individual perspective of functioning), and participation (which represents a person’s involvement in a life situation, functioning at a complex level of activity). However, there are continuing problems differentiating the activity and participation components for use when applying the conceptual model in practice, as in the case of measurement (Chapireau, 2005; Whiteneck, 2006; Institute of Medicine, 2007). Environmental factors are noted, along with personal fac- tors as modifiers of the whole set of concepts similarly to the use of biology, environment, lifestyle, and behaviors as risk factors in the IOM model. The ICF model, which has received international support, also provides a taxonomy for classifying function, disability, and health with standard Health Condition (disorder or disease) Body Functions and Structure Activity Par ticipation Environmental Personal Factors Factors FIGURE A-4 ICF model. SOURCE: World Health Organization (2001a). Figure A-4, R01582

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0 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY concepts and terminology. It provides an extensive set of domains that rep- resent the three primary areas of the model: body function and structure, activity and participation, and environmental factors. The domains are ac- companied by a coding scheme that allows for classification of a person’s characteristics at four different levels of specificity. In addition, there is also a coding scheme to denote qualifiers to represent the level of severity of the problem in the case of an impairment or the degree of barrier located in the environment. There are also optional qualifiers and a set of rules for their application. These domains and codes are posited as a measuring function, but it is misleading: although they may be useful in clinically oriented mea- surement associated with the body function and body structure sections, they are open to wide differences in operationalization in the activity and participation sections. ICF moves the field forward through the standardization of some ter- minology and the specification of domains or areas that can be considered points of operationalization for measurement purposes. However, the use of disability and functioning as umbrella terms creates as much confusion as clarity when they are used to represent everything. The emphasis on the body function and structure compliments the health condition classification of ICD-10 and makes the ICF classification a promising tool for clinical settings. However, from a social survey perspective, this emphasis on body structure and function, combined with the lack of differentiation between activity and participation, confuses the development of measurement to represent the process. The environmental context is viewed so broadly as to provide little guidance for measurement purposes. All three models are similar in that they identify some form of impair- ment, individual functioning, and societal participation in an environmental context as the key components involved in disability (some more clearly and others more broadly). The ICF model has difficulty providing a clear demarcation between activity and participation, but it provides a classifica- tion schema with an extensive set of domains to be considered. Although the Nagi and IOM concepts of functioning are directed more specifically at the whole person’s basic actions than is the ICF, the Nagi concept of “dis- ability” and the IOM concept of “disablement” are less specific and much more open to a wide range of possible interpretations from a measurement point of view. Environment in all three models is expressed in very broad brushstrokes, with emphasis in the Nagi model on the interaction with significant others or role sets;3 in the IOM model on physical modifications 3 Role set refers to the persons most commonly found to interact with an individual in specific role situations, so in the family situation the role set includes a spouse and children or parents, whereas in an employment situation a role set includes employers and colleagues or coworkers.

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0 APPENDIX A and vague definitions of social factors; and in the ICF model to all aspects of the extrinsic world that can contribute to the context in various settings. The last, though accurate, makes it nearly impossible to select a meaningful measure in a simple, concise way necessary in survey work. FROM CONCEPT TO MEASUREMENT Locating the Point of Measurement The first concept considered here is the pathology or condition that is the causative health problem for creating whatever impairment may result. This element is located within the person’s physical, mental, or emotional organs or organ systems; see Figure A-5. The pathology or condition is a health problem, an injury, or a congenital defect. It is the focus of diagnosis and treatment in the medical context. It takes place or is found in the per- son in one or more sites in or on the body. It is not a disability, although it can be a precursor to disability by causing an impairment that can in- Person Impairment FIGURE A-5 Impairment, located within a person. Figure A-5, R01582 circles bitmapped, fixed image type replaced, editable

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 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY TABLE A-5 Sampling of Disability Measures and How They Are Used: Demography and the Journal of Gerontology Article Data Source Primary Disability Measure Demography Freedman et al. NHIS 1997–2004 Behavioral measure of ADLs/IADLs— (2007) Ages 65+ need help [2] Cai and Lubitz Medicare Current Constructed variable combining ADL/ IADL measuresa (2007) Beneficiary Survey Mutchler et al. 2000 Census Functioning in basic actions and self-care (2007) [3] Journal of Gerontology Newcomer et al. NHIS-D Behavioral measure of ADLs/IADLs (2005) with indicators of unmet need in these measures Mendes de Leon Chicago Health and Aging Functioning in six ADLs, upper and et al. (2005) Project lower body functioning measures Agree et al. NHIS-D Count of difficulty functioning with ADL (2005) and IADL tasks Liang et al. Japanese Study of Older Functioning in six task items: (2005) Adults ADLs/IADLs Mermin et al. HRS Any health-related work limitation, (2007) question or questions not specified Muramatsu et al. HRS Limitations with ADLs/IADLs (difficulty (2007) or help not specified) Manton et al. NLTCS Behavioral measures of ADLs/IADLs (use (2008) help) and functioning in basic actions Liang et al. HRS Count of difficulty functioning with ADL/ (2008) IADL tasks [11] Wolinsky et al. African American Health Five basic action measures and seven (2005) Project indicators of difficulty in ADLs/IADLs Wolf et al. (2007) New Haven EPESE Difficulty with ADLs, functioning difficulties in basic actionsb Chipperfield Study of Aging in Manitoba Measure of functional status includes 22 et al. (2008) (AIM) items from existing ADL/IADL measures Kasper et al. Mothers of a study cohort Physical functioning and pain from Short (2008) composed of all first graders Form-36—10 items in Woodlawn in Chicago Forman-Hoffman HRS Summed functional limitations in eight et al. (2008) basic actions NOTE: EPESE = Established Populations for Epidemiologic Studies of the Elderly, HRS = Health and Retirement Study, NHIS = National Health Interview Study, NHIS-D = National Health Interview Study on Disability, NLTCS = National Long-Term Care Survey.

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 APPENDIX A Secondary Disability Measure Independent or Dependent Variable Conditions considered to cause ADL or Trend analysis—disability measure, dependent IADL variable None Trend analysis—disability measure used to explain disabled life expectancy None Disability dependent variable predicated on immigrant status Sensory communication Unmet need serves as dependent variable, others Social activity as predictive variables Measures were used as dependent variables and examined over time by age, gender, and race Use of assistive devices Measures of ADLs/IADLs used as control variables, assistive device used as predictor None Used as independent variable to predict trajectory—referred to as functional impairment None Used as an independent variable to predict how long baby boomers expect to work Conditions (used as number, not type) Used as independent variable to predict risk of nursing home admission One vision functioning measure and one Measures used to construct seven dimensions of assistive device measure [Total = 27] disability to predict active life expectancy Conditions, depressive symptoms Used as dependent variable—predicting changes associated with age and gender None Dependent variable predicted in part by previous subclinical status None Trend of transition into and out of disabled status Also used chronic condition list Used as independent variable to predict physical activity Health conditions—list Dependent variable associated with poverty and Condition limits activity in any way family stress Depressive symptoms and medical Used as independent variable to predict weight comorbidity based on conditions changes aIt is not indicated in the paper if the ADL/IADL measure is taken from the functioning questions about difficulties or the behavioral question about needing help. bMeasures are not organized on any theoretical structure but are based on Katz, Rostow, and Nagi measures.

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 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY risk of nursing home admission, the use of assistive devices, physical activ- ity, and weight changes. In a few instances, there are indications of either a lack of familiarity with the current theoretical models of disability or lack of understanding of the value of some of the measures that are available to be used. The first problem can be found in several of the articles in the use of terminology to discuss disability aspects of the analysis. A common terminology still is not being used and in some cases the conceptual ele- ments of theoretical disability models (identifying functioning difficulty as impairment) are being confused. Another problem is the continued restrictive interpretation of disability measures available for use and the lack of appreciation of broader aspects of disability (as conceptualized beyond the dependence focus that has been demonstrated here and inclusive of environmental factors when available). An example is the Mermin and colleagues (2007) article, which examines predictors of the length of time baby boomers feel they will work before retirement. HRS is used and an indicator of work limitation is one of the independent variables. It is a routine assumption that persons with work limitations will not work as long as persons without work limitations. However, there are available data in HRS that could have been used to test this routine assumption. HRS has a series of 10 questions that indicate if and how an employer has provided help so that a worker can stay on the job. If that information had been factored into the analysis, it could have given some insight into the effect of environmental factors on disability behavior associated with retirement and provided a very meaningful com- parison related to retirement choices. As with the examination of the data elements of the commonly used surveys in Tables A-2 and A-3, the literature reviewed hints at an even narrower use of the data for research purposes. Available environmental elements are used in only one of the articles, and that article focuses on tracking the use of assistive devices. The various role participation repre- sentations were used in only 1 of the 18 analyses. The broad emphasis of the literature seems to be descriptive of the status of dependence, either documenting changes in the prevalence of the disability variable over time or the effect of various other statuses—immigrant, age, race, gender—on prevalence of dependence (as represented by the ADL-IADL measures). Of course, using such a small sample of articles from only two journals pro- vides very little data on which to make a fully accurate assessment. CONCLUSIONS Although there are some very useful theoretical models of disability to underpin a wide-ranging research agenda about disability, the measurement of the conceptual components in the existing data sets and the use of data already available have not yet reached their potential. In some instances,

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 APPENDIX A the data and the analyses are still too closely tied to the medical conceptu- alization of disability, as a problem located within the individual. In other instances, the reduced financing and increased demand on data collection processes have forced choices that limit the expansion of the conceptual coverage of the data. Integral components of the disability process, elements of role participation, and the interaction of the individual and the environ- ment are vital to a more complete understanding of disability, but they are not generally considered. Although groups at various universities are working on some of these measurement problems, there is no general funded mandate, particularly in government-sponsored data collection efforts, to test or expand disability measurement beyond what is currently in use. Nor, until this year, has there been any coordination across data collection entities to consider some form of standardization of core efforts. A recent hearing in the U.S. House of Representatives (in June 2009), held in response to the National Council on Disability (2008) publication about disability data, may have drawn some more serious attention to this issue. The testing and approval of the ACS disability questions and their adoption for use in CPS, in the National Crime Victimization Survey for the Department of Justice, and for testing in NHIS may foretell the eventual closer coordination of disability measures, if not their immediate expansion. Jette and Badley (2002, p. 183) have noted that the “field of disability research is in need of uniform concepts and a common language to guide scholarly discussion, to advance theoretical work on the disablement pro- cess, to facilitate future survey and epidemiological research and to enhance understanding of disability on the part of professionals as well as the gen- eral public.” I strongly agree and would add that the field also needs some expansion of measurement to cover all the conceptual components of our theories, as well as coordination of measures that represent those theoreti- cal concepts. A very careful consideration of the use and interpretation of measures, particularly in research that is used to inform policy, is critically necessary. Whatever uniformity is developed in conceptualization and lan- guage is still undermined when it is not used in creating operationalized definitions of concepts and there are multiple variations in question-and- answer language. The strong medical model basis of work on disability in gerontology has created a rich set of measures that are narrowly focused in the area of identifying behavioral and functioning dependence. The measures have provided important policy information about problems and cost of the final one-eighth to one-tenth of the life-cycle. The data based on those measures have documented changes in longevity and health in people’s final years and have provided information that has allowed for the development of assistance programs that go beyond warehousing our elders in institutions. However, the very data and forms of measurement that have helped identify

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0 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY and understand the change in the structure of the problems of the aging population are no longer sufficient to address all the issues, particularly in relation to role participation. A 65-year-old person who is facing the very likely possibility of another 20 years of life may also experience the role changes associated with gradual development of functional limitations in basic actions before reaching the stage of dependence. Understanding the issues associated with the organized activities that are key to maintaining role participation, including the role that society and environment play in the process, can go a long way to improving those 20 years, as well as the final period of dependence. Finally, it is interesting that while none of the models currently in use proposes differentiating the meaning of disability among the three major age groups—children, adults, and the elderly—we go about measuring dis- ability within those groups in very different ways. Children’s disability is measured using either conditions or use of special services; adults’ disability is measured most broadly through a combination of functioning in basic ac- tions, limitations in work, and ADLs and IADLs, with an emphasis on work limitation; and the aging population’s disability is represented most com- monly by behavioral or functioning representations of ADLs and IADLs or, somewhat less frequently, by levels of functioning in basic actions. Ferraro (2006, p. S3) has made the point that “gerontology flirts with being medicalized” and should investigate topics not directly related to health. Studying the problems of disability from a role participation per- spective would move away from that health focus and contribute to the overall understanding of the aging process over the life-cycle. Expanding survey measurement to include a fuller, more robust coverage of functioning in basic actions, indicators of organized activity participation meaningful to role participation, and measures of key environmental factors would facilitate the study of disability across all age groups.

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 APPENDIX A ANNEX AMERICAN COMMUNITY SURVEY QUESTIONS, DEFINITION OF TERMS, AND SUGGESTED ADDITIONS TO QUESTIONS American Community Survey Questions8 Answer question  ONLY IF this person is  year old or older. Otherwise skip to the questions for person  on page . 16. a. Is this person deaf or does he/she have serious difficulty hearing? YES/NO b. Is this person blind or does he/she have serious difficulty seeing even when wearing glasses? YES/NO Answer question a ONLY IF this person is  years old or older. Other- wise, skip to the questions for person  on page . 17. a. Because of a physical, mental, or emotional condition, does this person have serious difficulty concentrating, remembering, or making decisions? YES/NO b. Does this person have serious difficulty walking or climbing stairs? YES/NO c. Does this person have difficulty dressing or bathing? YES/NO Answer  ONLY IF this person is  years old or older. Otherwise skip to the questions for person  on page . 18. Because of a physical, mental, or emotional condition, does this person have difficulty doing errands alone such as visiting a doc- tor’s office or shopping? Definition of Terms Willful action—Based on either performance or capacity, action reflects the individual’s will to carry out basic volitional bodily operations at the level of the organism (whole person). Examples include walking, climbing steps, reading, communicating, etc. It is distinct from body functions (ICF), which are “physiological functions of body systems” rather than functions of the whole person. When combined, multiple actions can result in performance of tasks (Nordenfelt, 2003). In the ICF, actions are included in the domain 8 Thissection is excerpted from the full ACS questionnaire, which is available at http://www. census.gov/acs/www/Downloads/SQuest09.pdf.

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 IMPROVING THE MEASUREMENT OF LATE-LIFE DISABILITY of activity defined as “the execution of a task or action by an individual, representing the individual perspective of functioning” (World Health Or- ganization, 2001b, p. 190). ICF does not differentiate actions and tasks. Specific task—Execution of a group of willful actions by an individual. It is an indicator of a series of related or more complicated actions nec- essary to accomplish an objective, which is a central component of role behavior. Examples include bathing, dressing, and feeding, which are cen- tral elements of self-care, or driving a car and planning a meeting, which can be central elements of employment. In ICF, tasks are included in the domain of activity defined as “the execution of a task or action by an individual, representing the individual perspective of functioning” (World Health Organization, 1991b, p. 190). ICF does not differentiate actions and tasks. Organized activity—Represents the accomplishment of a variety of specific tasks and willful actions in order to complete an activity that is socially rec- ognized or defined in a culture. An example would be going out to dinner, which entails making reservations, getting dressed appropriately, finding transportation, engaging with friends, reading a menu, ordering, paying the bill, leaving a tip, and other details. Role participation—Represents the accomplishment, through willful ac- tions, specific tasks and organized activities, of enough elements of a social role to claim that form of role participation as represented in a particular culture or society. Current Questions and Suggested Additions National Health and Nutrition Examination Survey In a typical week, how many times do you talk on the telephone with family, friends or neighbors? How often do you get together with friends or relatives; I mean things like going out together or visiting in each other’s homes? (per year) About how often do you visit with any of your neighbors, either in their homes or in your own? How often do you attend church or religious services? Do you belong to any clubs or organizations such as church groups, unions, fraternal or athletic groups, or school groups? Altogether how often do you attend meetings of the clubs or organiza- tions to which you belong?

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 APPENDIX A Suggested additions to monitor behavioral changes would include some measurement of how this behavior differs from that which occurred before the onset of the limitation. It would require tracking of what has been re- ported as limitations in functioning or tasks or organized activities. An example would be additions to the following questions to track those changes: Do you belong to any clubs or organizations such as church groups, unions, fraternal or athletic groups, or school groups? Have your group memberships increased, decreased, or remained the same since the onset of [fill in with type of functional limitation, i.e., your experience of limitation in walking—various ways to include limitations in different areas of physical functioning can be developed]? Altogether how often do you attend meetings of the clubs or organiza- tions to which you belong? Has your meeting attendance increased, decreased, or remained the same since the onset of [fill in with type of functional limitation, i.e., your experience of limitation in walking]? Next, depending on the answer provided (increase, decrease, or re- mained the same) a follow-up could probe why the behavior changed (in- creased or decreased) with no questions if it stayed the same. Longitudinal Study of Aging During the past two weeks, did you— Get together socially with friends or neighbors? Talk with friends or neighbors on the telephone? Get together with ANY relatives not including those living with you? Go to church, temple or another place of worship for the services or other activities? Go to a show or movie, sports event, club meeting, class or other group event? Go out to eat at a restaurant? Do unpaid volunteer work, such as teaching, coaching, office work, or providing care? Participate in Elderhostel? Suggested additions would be similar to those suggested above. The operative element being to discover if this activity represents a change from the activity level or type of activity experienced before the functional limita- tions began to be noticeable.

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