Community integration of individuals with spinal cord injuries.
First, the definition adopted herein states that "community integration" refers exclusively to non-institutional living, i.e., the focus is solely on people with SCI who are living in nonmedical, noncustodial settings.
Second, community integration refers to a changing and long-term status of the individual. Because the effects of SCI and the individual's adaptations to injury are not static, short term or acute, but rather unfold over the lifetime, the individual's integration into the community must evolve over time. Further, this evolution is a function not only of changes in the structures and functions of the individual's body, but also of a variety of developmental processes; for example, changes in the person's skills at negotiating life as a person with a disability, as well as the abilities and strengths the individual brings to situations -- adaptability, intellectual skills, motivation level, and the like. The dynamics of community integration for an individual with SCI also vary with the ebb and flow of environmental resources, opportunities, and challenges; for example, vocational opportunities that change over time, social support provided within the individual's family and friend network, his or her access to economic resources, the community's willingness to provide opportunities and function inclusively with respect to individuals with disabilities, and the like (Brown, Gordon & Ragnarsson, 1987).
Third, community integration refers to an individual's status within a social-physical environment, i.e., how the individual "sits" within an environment defined by society and by natural law. In this view, four ways of relating to the social-physical environment are central to "community integration":
* characteristics of the individual's residence -- type of housing, presence of others in the residence, etc.;
* the individual's vocational and economic role activities;
* his or her integration into social networks; and
* his or her participation in community- and home-based activities.
In sum, community integration encompasses two basics of life: where one lives and what one does within the social-physical context of living.
In fact, as stated above, the "where one lives" component of community integration is a defining characteristic. Integration into the community, at the very least, requires living in a residence that supports and, hopefully, encourages an individual to interact fully with the community. Private homes, apartments, and some group homes are preferable to nursing homes or hospitals for an individual to live life to his/her full capabilities.
From this perspective, the "what one does" component of community integration is crucial in trying to measure the degree to which individuals with SCI living in the community are also integrated into the community. Higher levels of integration into the community require that an individual have a meaningful and culturally appropriate vocational/economic role to play. This may entail working as a student, a volunteer, a homemaker, or as a salaried worker. Community integration also has a social network component. Thus, as the individual is integrated into more complex social groups, including family, friends, community settings, self-help groups, and such, he or she optimizes contacts with others. Finally, the community-integrated individual engages in a variety of activities inside and outside the home that define daily life for active community members (e.g., travel to work/school, grocery shopping, going to movies, dining out, cleaning house). In sum, in this approach we must look at vocational/economic roles, social network involvement, and patterns of daily life activities to determine where individuals with SCI fit on the integration continuum -- from "only just there" to "fully active" in and interwoven into the fabric of the community.
Although one can measure (Willer, Rosenthal, Kreutzer, Gordon, & Rempel, 1993; Whiteneck, Charlifue, Gerhart, Overholser, & Richardson, 1994) the degree of integration of an individual with SCI into the community and the ways in which people with SCI participate in community living (or do not), this does not imply that one can say what is successful versus unsuccessful community integration. Success, we believe, is defined individually and is determined by a person's achieving a life consistent with his/her hopes and aspirations; success must be insider-driven rather than outsider-dictated.
In this article, recent literature on several aspects of community integration of individuals with SCI will be discussed, adhering to the four-part concept of community integration defined above: where one lives, vocational/ economic roles, engagement in social networks, and involvement in activities in the home and com-munity.
Where One Lives. Recently published data from the National SCI Model Systems database (Dijkers, Abela, Gans, & Gordon, 1995) indicate that, following initial rehabilitation, most individuals with SCI (92 percent) are discharged to private residences in the community. Nursing home discharge was associated with three variables:
* Age: Close to 30 percent of those 70 or older, compared to about 2 percent of those younger than 20, were discharged into nursing homes.
* Marital status: Higher rates of being discharged into nursing homes were seen amongst divorced (9 percent), separated (11 percent) and widowed persons (24 percent), compared to those who were single or married (4 percent).
* Severity of injury: Tetraplegics were more than twice as likely to be discharged to a nursing home than paraplegics (8 percent vs. 3 percent). Dijkers and colleagues (1995) suggest that these findings point to self-care and health needs that far exceed what available support systems -- largely family members -- can provide.
Vocational/Economic Roles. A vast literature exists on return to work following SCI (see Trieschmann, 1988, for an extensive review of this literature). While much of this work has focussed on isolating psychological traits associated with working, many of these studies are methodologically weak. On the whole, they suggest that return to work is related to three variables:
* Degree of impairment: Paraplegics are more likely to return to work than tetraplegics, and, within each group, those with incomplete injuries are more likely to work than those with complete injuries.
* Age: Those who are injured younger are more likely to return to work.
* Rehabilitation experiences: Completion of a vocational rehabilitation program increases the likelihood of returning to work (Devivo, Rutt, Stover, & Fine, 1987).
In looking at vocational and other economic roles, researchers have found that access to resources can affect economic role functioning. For example, in a study of the impact of electronic control devices on the activity patterns of individuals with SCI, Efthimiou, Gordon, Sell, and Stratford (1981) found that the use of electronic control units was associated with increased frequency of participation in educational activities, increased independence, and decreased inactivity. In another study of individuals with SCI, Brown (1983) found that access to a private vehicle increased the probability of being employed from 0 percent to 50 percent.
Thus, return to work appears to be related not only to demographic and impairment variables -- relatively immutable characteristics -- but also to environmental factors -- which can be changed through accessing resources and through the provision of services (e.g., personal care assistance, electronic control units, accessible transportation).
Examination of the SCI National Model Systems database (Dijkers et al., 1995) reveals that, by the first year post-injury, 16 percent of those who at the time of injury were working have returned to work, and 8 percent have entered school; more than 70 percent consider themselves to be unemployed. Employment following SCI increases steadily, until at 10 to 11 years post-injury one-third of those in the database were working. Thus, re-entry (or initial entry) into the world of work after SCI is a slow process, which, for any cohort of individuals, may span a decade or more; but two-thirds of this population appears not to move out of unemployment at all.
In terms of continuing or resuming an educational program following SCI, data from the National SCI Model Systems database (Dijkers et al., 1995) indicate that about 15 percent of this group had improved their level of education after injury. Of interest was the finding that, at 5 years after injury, those with SCI had somewhat less education than the general U.S. population, but by 10 years postinjury those with SCI were somewhat better educated. Thus, SCI appears to trigger changes that lead to engagement in education at a level beyond the norm for the United States.
Despite the results summarized above, it is difficult to explain why only about a third of those who sustain an SCI enter the work force within 10 years of injury, when about twice this number were working at the time of injury. Further, many individuals with SCI are injured during their years of educational preparation for entry into the work force. If SCI had not intruded, one would expect that most of these students would within a few years enter the work force as they complete their educational programs. Thus, the small percent of people with SCI working 10 years after injury reflects both those who had been working and did not return to work or remain in work as well as those who never attempted age-appropriate entry into the work force. This high level of unemployment results in a personal loss to the individual, as economic and other satisfactions of work are foregone and a large part of the day is left unoccupied, as well as an economic loss to society in terms of benefits paid out, lost tax dollars and reduced economic growth.
While clearly SCI can be a barrier to some forms of employment -- jobs requiring manual labor or extensive mobility, for example -- it does not preclude most other forms of work. And, even though many individuals with SCI participate in educational programs, this appears to lead at most to marginally increased employment. It is clear that many elements, personal and societal, some of which remain unidentified, discourage the return to work. At the personal level, clinical evidence suggests that many people who experience SCI are left bereft of a compelling vision of their future. They are lost in what no longer exists for them and do not find their way through to envision a positive future for themselves.
At the societal level, factors such as social security disincentives and environmental barriers bar access to the workplace for many. Disincentives weigh heavily against return to work, as many individuals with SCI cannot, as wage earners, afford the necessities of life with SCI that are provided to unemployed individuals with disabilities through publicly funded programs. These deterrents are amenable to intervention, if society chooses to invest in the inclusion of people with disabilities, including reasonable accommodations to their needs.
Activities and Social Networks. Brown (1983) and Brown, Gordon, and Ragnarsson (1987) compared the activity choices of well-matched samples of people with SCI (N=22) and those without a disability (N=22). She raised the question of the degree to which the effects of SCI would be encountered in daily life if resources of individuals with SCI were optimized. The two samples were matched on such variables as gender (all male), age (mean = 39, range = 20-53), residence (most participants lived in the suburbs with an average of two other people living in their residence; 13 lived with children), vocational status (all participants were working, except for one person in the nondisabled group who was a student), income (mean SCI = $47,000; mean nondisabled = $52,000), access to automobiles (all participants owned and drove their own cars), and education (15 of those with SCI had advanced degrees vs. 12 in the nondisabled sample).
The picture was different when another aspect of activity choice was examined: the frequency of activities engaged in, which is an indicator of activity tempo (or the pr-oclivity/ability of an individual to switch freely from one activity to another). When activity choice was examined in this manner, those with SCI participated in 20 percent fewer activities than did those without a disability. This reduction in activity tempo was not uniform, but instead was restricted to the categories of personal care, household tasks, active recreation, and travel activities. It appears that individuals with SCI adapt to their impairment by doing some things less often, which seem to be activities in which a large expenditure of energy is required, architectural barriers are likely to be encountered, and/or assistance is likely to be needed.
Based on the activity duration and frequency measures, it was reasoned that the impact of impairment would be highlighted in terms of the time spent in each occurrence of an activity: Those with SCI would do certain things longer, in each instance of certain activities. Specifically, it was found that those with SCI spent 25 percent more time in each occurrence of vocational, personal care, and socializing activities. Apparently, in order to reduce the cost in energy of shifting activities (for example, interrupting one's work activity to socialize every now and then with coworkers) and to maximize low-energy, pleasurable activities (for example, socializing) or because certain types of tasks may simply take people with SCI longer to complete than people without a disability (for example, dressing), people with SCI do tend to spend more time in certain activities whenever the activity occurs.
Even though the two groups of individuals were well-matched and had considerable resources available to them, those with SCI still evidenced patterns of activity somewhat different than those of persons without a disability. Their disability limited the extent of their participation in activities both at home and in the community. Nevertheless, the differences were quite small -- clearly smaller than would have been the case if the comparison had been between two low-resource groups of individuals, one with SCI and one nondisabled. High-level resources, these data suggest, help minimize differences and optimize opportunities for community integration.
Was the SCI sample less successful than the nondisabled group in terms of community integration? Some of Brown's data (1983) suggest that success was unrelated to group activity differences. Specifically, the two groups did not differ in their ratings of satisfaction with their daily life activities and how they spend their time. It appears that these high-resource individuals with SCI had learned to adapt to their lives as lived; their activity choices and degree of integration into the community differed somewhat from the nondisabled group, but their satisfaction with daily life did not.
Discussions with many people with SCI and those with other types of severe disabilities, e.g., traumatic brain injury, stroke, confirm that, after onset of a disability, doing things -- both at home and in the community -- becomes more time consuming, often to the point of exhaustion. This point was recently made by the literary agent, Robert McCrum (1996) when discussing the impact of his stroke:
"Six months ago, I could slip across the street to post a letter in the time that it takes to type this sentence. Now I would have to raise myself up from my chair, find my cane, limp to the front door (say, 3 minutes), negotiate the steps to the street, and make my way to the corner (roughly 5 minutes), and then hobble back and collapse, exhausted on the sofa, as though I had just run a marathon. Every day, I am acutely reminded that there is a world out there, a world I cannot be part of in quite the same way... I have become friends with slowness, both as a concept and as a way of life" (p. 118).
This is from an individual with a recent stroke. But, Brown's data suggest that for some with SCI, with much longer-term impairment, there is also an accommodation with their injury and its impact -- its "slowness, both as a concept and as a way of life."
Individuals with SCI live their lives in the community learning, more or less well, to adapt to and negotiate the sometimes conflicting paths of who they are and who they want to be. Indeed, this process is part of life for each of us, as we try to minimize the discrepancy between current reality and valued goals. When people have had a spinal cord injury, this reconciliation process is made more difficult because they must confront the additional discrepancy between who they were before injury and who they are now. In other words, the person with SCI must come to understand how his or her disability moderates or alters dreams and hopes, while still maintaining hope and staving off despair.
The data reviewed indicate that most individuals with SCI have largely achieved the minimal level of community integration, i.e., over 90 percent reside in the community after rehabilitation discharge. But in other ways, their integration appears tenuous at best. It may be that only about one-third of those with SCI return to work because they have not been encouraged or helped to develop a new set of hopes. We often forget that a spinal cord injury does not destroy a person's need to dream and hope, or whatever we wish to call a desire for something better for oneself. All people benefit when supported in their quest toward their dreams, but this is a sine qua non for individuals facing a dramatic shift in life's circumstances, such as SCI.
As discussed above, social-physical environments hinder the individual with SCI in a variety of ways. Part of this hindrance may reside in the way in which the media portrays people with spinal cord injury -- narrowing the public's views and attitudes toward them. People with SCI are portrayed, on the one hand, as helpless victims of unfortunate events -- people whose bodies become their prisons, or, on the other hand, as "supercrips" -- people who are spoken of as "heroic" and "inspirational" (Koplow, 1996). The stories of Dennis Byrd, Travis Roy, and Christopher Reeve, indeed, are heroic. But, no matter the form of the presentation, it is clear that when people with SCI are defined as heroes or victim, they are also defined as being directly (and often solely) responsible for their fate. The corollary is that the social-physical environment is "off the hook." Thus, the "victim" is the person who is (sadly) unable to adapt to the world of the able bodied, and the "supercrip" is the person who (heroically) meets the challenge. The world is absolved of its responsibility, as it is the injured person who either "does it or doesn't" (Koplow, 1996).
The emphasis of this article has been on the individual-within-the-environment, rather than the individual-as-island. Indeed, community provides the context for the failure of "victims" of SCI and for the success of "supercrips." We have seen how access to personal, societal, economic, and social resources within the personal community and in the wider society can level the barriers to integration into community life. It is also clear how the dynamics of adaptation and integration are slow-paced for most. More data are needed to define fine the resources most essential to successful integration, however "success" may be defined.
In the meantime, no research at all is needed to identify a resource universally needed: encouragement by family, friends, and the wider community to pursue our dreams and goals. Spinal cord injury does not change this need for broad-based support.
(1.) The preparation of this manuscript was supported in part by Grant No. H133N50008 to the Department of Rehabilitation Medicine, The Mount Sinai Medical Center, New York, NY, from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.
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2. Brown, M., Gordon, W.A., & Ragnarsson, K.T. (1987). Unhandicapping the disabled: What is possible? Archives of Physical Medicine and Rehabilitation, 66, 206-209.
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6. Koplow, A. (1996). Spinal cord injury and the media. Spinal Cord Injury Life, Spring, 12-17.
7. McCrum, R. (1996). My old and new lives: What happens when in the course of a night your life is changed forever. New Yorker, May, 7, 112-119.
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9. Willer, B., Rosenthal, M., Kreutzer, J.J., Gordon, WA., & Rempel, R. (1993). Assessment of community integration following traumatic brain injury. Journal of Head Trauma Rehabilitation 8, 75-87.
10. Whiteneck, G.G., Charlifue, S.W. Gerhart, K.A., Overholser, J.D., & Richardson, G.N. (1994). Quantifying handicap: a new measure of long-term rehabilitation outcomes. Archives of Physical Medicine and Rehabilitation, 73, 519-526.
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|Title Annotation:||Spinal Cord Injury, Part|
|Date:||Mar 22, 1997|
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