Changes in quality of life observed in 254 people with developmental disabilities who moved from a large state institution to supported living settings as a result of a court ordered closure of Hissom Memorial Center in Oklahoma were reported. Using pre–post measures on a multitude of qualities of life, we measured significant improvements between 1990 and 1995 in class members' adaptive and challenging behaviors, participation in employment, number of hours of developmentally oriented services, opportunities for integration, frequency of contact with relatives, and use of antipsychotic medications. We noted concern regarding health care, where there was a need for easier access to health professionals in community settings.
The deinstitutionalization movement has been a major force in the mental retardation field for at least 25 years. Over 100,000 persons have moved from public congregate care facilities to smaller group home-like settings in the community (Conroy, 1977; Prouty & Lakin, 1996). Braddock and Hemp (1997) described a nation-wide trend in which mental retardation service delivery systems are evolving from a reliance on state-run institutions towards an expansion of community living opportunities. The welfare of persons who move from congregate care to community living is of concern to families, policymakers, and human rights advocates.
Numerous studies have shown that community living is associated with improvements in adaptive behavior for persons who leave congregate care facilities (cf. Conroy & Bradley, 1985; Dagnan, Trout, Jones, & McEvoy, 1995; Haney, 1988; Rose, White, Conroy, & Smith, 1993). In early research Fiorelli and Thurman (1979) reported increases in certain adaptive behavior or domestic-type skills following transfer from an institution to community-based programming. They attributed these increases to improved opportunity for such behaviors in community settings. For example, the absence of a commissary to provide food for group home residents enables them to participate in food preparation. Similar findings of increased adaptive behavior were reported in Conroy and Bradley's (1985) study of the closure of Pennhurst Center in Pennsylvania. They found that each of six study groups experienced growth in adaptive behavior following transfer to community living arrangements. Continued growth in adaptive behavior, albeit at a slower rate, was reported in longitudinal analyses. Felce and Perry (1996) reported similarly modest growth in adaptive behavior in their 7-year longitudinal study of community placement. Fine, Tangeman, and Woodard (1990) also reported growth in adaptive behavior over time in the community. It might be tempting to suggest that these observed increases in adaptive behavior are attributable to any of a number of factors related to a person getting out of an institutional setting, however, some evidence suggests otherwise. Maisto and Hughes (1995) reported adaptive behavior growth for persons who lived in group homes, regardless of previous residential placement. Persons who had previously lived in institutional settings evidenced the same pattern of growth as did persons who did not live in institutional settings.
The pattern of adaptive behavior growth following deinstitutionalization has been consistent in the literature. Larson and Lakin (1989) reviewed 18 separate research studies that met specific criteria for experimental design and recency. The community placements of 1,358 persons were reviewed in these studies. Eight of these studies involved comparison between experimental and contrast groups, and significant improvements in adaptive behavior, self-help, and domestic activity skills among the persons who moved to community placements were found in each of the studies. Of the 10 longitudinal studies, half contained reports of statistically significant improvements in adaptive behavior. Larson and Lakin concluded that community placement was generally associated with positive life changes. Similar positive conclusions were reached in a meta analysis conducted by Lynch, Kellow, Thomas, and Victor (1997). By studying effect sizes across 11 studies, they concluded that the adaptive behavior gains that followed deinstitutionalization were most pronounced in the area of self-care. Larger gains were reported for persons with greater cognitive deficits, a finding that was in marked contrast with the earlier institutional research of Isett and Spreat (1979a).
In addition to relatively objective measures of adaptive behavior change, there has been a growing interest in some of the more subjective outcomes of deinstitutionalization. Quality of life, in particular, has become a frequently selected dependent measure for more recent longitudinal deinstitutionalization studies. Wehmeyer and Bolding (2001) followed people who moved to community-based residential and work environments. They reported significantly increased self-determination, autonomy, and choice following relocation to community-based environments. These constructs—self-determination, autonomy, and choice—have been generally identified as correlates of life quality (Campo, Sharpton, Thompson, & Sexton, 1997; Wehmeyer & Schwartz, 1998). Similarly positive changes in life quality were reported by O'Brien, Thesing, Tuck, and Capie (2001), who followed 54 people who left an institution for community placement, and by Cooper and Picton (2000), who followed people from an old institution to either community homes or refurbished institutional homes. Stancliffe and Avery (1997) reported that adults who moved to community homes had more opportunities to exercise choice than did their peers who remained in the institution, and they had more opportunities to exercise choice in the community than they had previously in the institution. The positive nature of this finding is somewhat tempered by the report that the opportunities to exercise choice were relatively low in both the institutional and community settings. Lord and Pedlar (1991) used a more ecological approach to evaluate the quality of life for persons who were placed in community programs following an institutional closure. Eighteen persons were intensively interviewed and studied, and the authors concluded that the quality of life had improved for 13 of the 18 individuals. The general consensus of this research appears to be that placement in community settings is associated with increased life quality; however, we note that there are some methodological concerns about this line of research. Antaki (1999) has suggested that alterations to the interview process may artificially inflate quality of life ratings. Cummins (2001) suggested that quality of life is a largely endogenous variable, subject to environmental change only in response to extreme changes. Some support for Cummins' argument can be taken from Schalock, Lemanowicz, Conroy, and Feinstein (1994), who found that personal characteristics predicted the greatest amount of variance in life quality ratings.
Deinstitutionalization also affects family members. Larson and Lakin (1991) noted that an overwhelming majority of families “became satisfied with community settings once their son or daughter moved from the institution despite general predispositions to the contrary” (p. 37). Similarly, Latib, Conroy, and Hess (1984) reported a near complete switch in family attitudes toward community placement after the family member was moved from congregate care to a community placement. Grimes and Vitello (1990) reported similar attitudinal changes.
Although community placement does appear to be an improvement over congregate care in many ways, there are some areas in which it may not fully match congregate care. A particular concern of late has been the quality of health care that is provided in community programs. Strauss and Kastner (1996) reported that risk-adjusted odds of mortality were approximately 72% higher in community programs than in congregate care settings.
Community placement represents a massive life change for a given individual, and it seems reasonable that the process must be evaluated by examination of multiple indicators of outcome. In any thorough evaluation of the process of moving people from congregate care to community living, investigators must consider factors such as adaptive behavior, health, and quality of life, and understand that there is probably no one indicator that will offer the final definitive statement on deinstitutionalization.
The court-ordered closing of Hissom Memorial Center (Ellison, 1987) in Oklahoma afforded the opportunity to examine the impact of deinstitutionalization across a wide range of indicators for a large sample of persons. Judge James Ellison of the United States District Court for the Northern District of Oklahoma ordered Hissom closed in July 1987. In handing down the order, Ellison gave strong preference to supported living rather than the group home models that had grown rapidly in the 1970s and 1980s. Supported living was defined as living in small supervised community-based homes with no more than one or two roommates.
Immediately after the court handed down its initial order, an accounting firm was engaged to perform an exact count of Focus Class Members. Firm personnel determined that there were 520 people in 1988 who met the definition of a Focus Class Member—anyone who lived at Hissom on or after May 2, 1985. The first person left Hissom in 1990, and the facility was fully closed in May 1994. Our purpose in the present study is to describe various outcome indicators for persons who lived in Hissom in 1990 and in small supported living arrangements in the community approximately 5 years later.
Characteristics of the Focus Class Members
The Focus Class Members are people with severe disabilities. Of those for whom a level of mental retardation had been assigned (95.3%, or 242 of 254 individuals), 80% were labeled as having severe or profound mental retardation. There were 160 (63.0%) males and 94 (37.0%) females. Their average age in 1995 was approximately 30 years (range = 19 to 52 and standard deviation [SD] = 5.1). Approximately 83.9% of the class was White; 10.2%, Black; and 5.5%, individuals referred to as Native Americans. Significant additional disabilities were reported at the following rates: vision, 43.7%; physical disabilities, 43.7%; hearing, 13.4%; other unspecified disability, 10.6%; cerebral palsy, 6.7%; feeding tube, 7.9%; autism, 5.9%; and mental illness, 2.0%. In comparison with national demographic data regarding persons who had mental retardation and lived in institutional settings, this group appeared slightly younger than those found in the 1998 survey (Anderson et al., 1999). In that study Anderson et al. found that approximately 57% of persons with mental retardation who lived in institutions were over the age of 40. Gender and level of mental retardation data were more comparable. Obviously, the age difference of about 10 years may affect the generalizability of these findings.
Data were collected by graduate students and staff members from the Sociology Department at Oklahoma State University. The university conducts annual 2-day training sessions on data-collection methods to prepare the collectors. Appointments with participants were coordinated by the data collectors and a scheduling clerk from the university. The collectors were instructed to be flexible and avoid interference with routines and schedules. Data collection required access to (a) the person, (b) whoever knew the person best on a day-to-day basis, (c) the person's home, and (d) records concerning the person's services and supports. Data-collection visits required approximately 70 minutes at the residence.
Part I of the data-collection process involved directly interviewing the available staff person who was most familiar with the service recipient. This process entailed reading each of the items in the questionnaire to the respondent and recording his or her response. Interviewers had been trained to offer standard responses to specific requests for clarification. Items 1 through 151 were completed in this manner. Part II of the data collection involved direct interviews with service recipients. This process began with an introduction and an informal solicitation of cooperation. If the consumer was willing to participate, the interviewer first asked several trial questions to determine whether that individual was able to participate. If the person could respond to the trial questions, a series of 26 questions was asked. Most of the items required the response of “yes,” “no,” or “not sure.” To minimize the effect of acquiescent responding (Heal & Sigelman, 1995), the interviewer restated one item a second time in reversed order (i.e., “Is the food here good or bad?” versus “Is the food here bad or good?”). If the responses of the consumer did not agree on the two differently worded versions of the item, his or her responses were not included in the analysis.
Oklahoma administers the Developmental Disabilities Quality Assurance Questionnaire—hereafter called the Quality Assurance Questionnaire (Oklahoma State University, 1992)—for all consumers (i.e., service recipients) within its mental retardation service system on an annual basis. This questionnaire, which is administered by interviewers contracted by the state, includes major sections on adaptive behavior, challenging behavior (i.e., socially unacceptable behaviors, such as aggression, property destruction, and self-injury), living site conditions, health, social interactions, community integration, service planning, and consumer satisfaction. We note that the third party informants in 1990 were different than the third party informants in 1995. Although this is a potential source of conflict, in general, interrater reliability on the components of the questionnaire appears satisfactory (Fullerton, Douglass, & Dodder, 1999). (A copy of this questionnaire is available from the authors.) Portions of this comprehensive assessment device that were used in this particular study are discussed below.
The scale of adaptive behavior used in Oklahoma was derived from the American Association on Mental Retardation's Adaptive Behavior Scale (Nihira, Shellhaas, Foster, & Leland, 1974). This shortened version, called the Behavior Development Survey (Individualized Data Base Project, 1975) consists of 32 items and yields scores that range from 0 to 129, with lower scores indicating lower levels of adaptive behavior. It is administered by interviewing a third party who is familiar with the person whose adaptive behavior is being measured. Pawlarczyk and Schumacher (1983) reported that the Behavior Development Survey is a concurrently valid method of assessing adaptive behavior, based on a review of correlation matrices from simultaneous administrations of the instrument, the AAMD Adaptive Behavior Scale, and the Vineland Social Maturity Scale. Roszkowski and Bean (1981) had earlier demonstrated the statistical feasibility of constructing a shorter version of the AAMD Adaptive Behavior Scale via a multiple regression approach. In an unpublished study, Devlin (1989) revealed an interrater reliability of .91, a figure that is consistent with Isett and Spreat's (1979b) report on the longer version of the scale. For this study, we also calculated measures of internal consistency reliability. Cronbach's alpha was determined to be .98 for the 1990 administration and .97 for the 1995 administration.
There are 16 items on the questionnaire that measure the severity and frequency of socially unacceptable behaviors emitted by the participants. Possible scores range from 0 to 100, with 100 indicating a complete absence of such behaviors. These data are collected via interview with knowledgeable informants. This scale has been used in other studies of relocation from institutional settings to community settings (cf. Conroy & Bradley, 1985; Conroy, Efthimiou, & Lemanowicz, 1982). Test–retest and interrater reliabilities for this scale were reported as .90 and .65, respectively (Conroy, Efthimiou, & Lemanowicz, 1981).
Productive use of time
Data collectors queried knowledgeable informants regarding each Focus Class Member's activities during the day. Both vocational and educational activities were categorized. A Productivity Scale was created by summing the total time spent in vocational and/or educational activities. Fullerton et al. (1999) reported a test–retest reliability of .91 for the Productivity Scale in a related study.
For the Quality Assurance Questionnaire, knowledgeable informants are asked to estimate the frequency with which the Focus Class Members leave the residence to engage in social or economic intercourse. Examples of such activities include visiting friends, shopping, dining out, going to the movies, and going to the bank. Fullerton et al. (1999) reported the test–retest reliability of this index to be .89.
Informants were asked to estimate the number of hours in the previous month that each Focus Class Member received a variety of different services. These potential services included habilitation training, homemaker services, occupational or physical therapy, psychotherapy, nursing services, psychiatric services, communication training, and audiology services. From these data, one can estimate the number of individuals receiving a given service and the number of service hours that were provided. Because reliability data are lacking on these particular variables, our results with respect to service provision should be viewed with less confidence than other variables in the study. Given the similarity of these questions with those about community integration, it might be reasonable to expect reliabilities similar to those obtained on community integration questions; however, we have no data to substantiate this. We note that poor reliability would only serve to make the analysis more conservative, making it more difficult to detect differences.
There are three questions in the Quality Assurance Questionnaire that address family involvement, with staff informants providing information on family contact. The three family questions covered frequency of family contact, frequency of family visits, and frequency that the consumer visits the family. Summing these three scores yields a brief Family Contact Scale that has an internal consistency reliability of .87. A score of 18 on this scale would indicate maximal family involvement (indeed, an individual would literally have to live with his or her family to achieve this score). A score of 3 would indicate that either the individual has no family or has not had family contact within the past year. This scale has been used in other Oklahoma studies (Spreat & Conroy, 2002).
Use of medications
Health care indicators
The Quality Assurance Questionnaire contains a section on medical needs, in which respondents are asked about the medical needs and access to medical services for the members of the Focus Class. These data are collected by interviewing knowledgeable informants and by reviewing available records.
The mean adaptive behavior scale score for the 254 study participants in 1990 at Hissom Memorial Center was 41.5 (SD = 28.8). In 1995, these same individuals were living in supported living arrangements in the community, and their mean score was 47.3 (SD = 29.5). A correlated t test revealed a statistically significant difference between these two data sets, t(253) = 9.2, p =. 000.
It is possible to extract three factors from the adaptive behavior scale using principal components factoring with varimax rotation. Factor 1, which subsumed 52.2% of the variance, was explained primarily in terms of self-care items. Factors 2 and 3 explained 9.1% and 4.5% of the variance, respectively. Factor 2 was defined primarily by academic skill type items, whereas Factor 3 was largely defined by socialization type items. Table 1 presents the item function matrix of this solution, which yields factors somewhat similar to Greenspan's (1997) tripartite model of practical, conceptual, and social intelligence. Scale scores were created for each of the three factors by summing the constituent items, and these unequal length scales were submitted to internal consistency analysis. Cronbach alphas of .96, .92, and .83 were determined for the three factors, suggesting that each scale has sufficient reliability for program evaluation purposes. Of course, such high reliabilities would be expected for scales that were constructed via factor analysis.
Table 2 presents the mean factors scores that were derived from the analysis above. These factor scores were submitted to doubly repeated measures analysis of variance (three adaptive behavior factors and the two data-collection times). A Wilk's lambda of .73, equivalent to F(1, 253) = 92.9, p = .000, revealed a statistically significantly difference over time. In follow-up analysis, using correlated t tests with Bonferroni correction, we found no differences with respect to self-care skills, but statistically significant improvement was noted with respect to academic skills, t(253) = 22.5, p = .000. A statistically significant decline in social skills was also noted, t(253) = 8.2, p = .001.
It could be argued that these changes might have occurred anyway if the Focus Class Members had been left in Hissom Memorial Center. One might even argue that the observed positive changes mostly occurred in Hissom Memorial Center prior to discharge. The study had no real controls to counteract such arguments. To attempt to investigate such possibilities, we conducted a small scale recurrent institutional cycle design study (Campbell & Stanley, 1966) on the Adaptive Behavior Scale scores. The recurrent institutional cycle design is essentially a nomothetic variant of the multiple baseline design used in behavior analysis research. Table 3 presents annual adaptive behavior scores for cohorts within the Hissom Focus Class who left the center at different points in time. We used all Focus Class Members who provided adaptive behavior data in every year from 1991 through 1995, a requirement that did reduce sample size to 152 across four cohorts. These data indicate that a statistically significant increase in adaptive behavior was noted for two of the four cohorts immediately following their discharge from Hissom. The third and fourth discharge cohorts yielded data suggestive of increased adaptive behavior, but these apparent increases failed to achieve statistical significance. Although these data do not entirely refute the argument that something other than community placement caused the increased adaptive behavior scores, they add some limited confidence in eliminating other explanations.
Another major outcome is in the area often referred to as problem behaviors. These are behaviors that tend to offend or harm others or are harmful to the person exhibiting the behavior. Assault, self-mutilation, and property destruction are typical examples. Challenging behavior is measured both in terms of frequency and severity. The Challenging Behavior Frequency Scale yielded average scores of 84.1 (SD = 15.4) and 87.6 (SD = 13.7) for 1990 and 1995, respectively. These scores were found to be significantly different by a repeated measures analysis of variance, F(1, 253) = 7.4, p = .000. Similar findings were evident with respect to the Challenging Behavior Severity Scale, where mean values of 89.2 (SD = 12.0) and 92.7 (SD = 9.8) were obtained for 1990 and 1995, respectively. These values were also found to be significantly different by a repeated measures analysis of variance, F(1, 253) = 19.1, p = .000. We note that the effect sizes for both of these comparisons were relatively modest. Eta-squared values of .028 and .070 were obtained for Challenging Behavior Frequency and Severity Scales, respectively. These data suggest reduced levels of maladaptation in 1995, but caution must be exercised in interpreting them because a relatively high percentage of Hissom Focus Class Members did not exhibit challenging behaviors (20.1% in 1990 and 30.7% in 1995).
Individual challenging behavior items were examined, and significant reductions in challenging behavior (with Bonferroni correction) were noted for frequency of rebellious behavior, t(253) = 2.8, p = .000, runs away, t(253) = 4.1, p = .000, and unresponsive to activities, t(253) = 4.3, p = .000. No behavior increased significantly.
Productive Uses of Time
The questions on day activity enabled us to estimate the number of hours that each Focus Class Member spent in vocational and/or academic activities in the previous month. Volunteer and recreational activities were not included in this analysis. At the grossest level of analysis, the average Focus Class Member was reported to have spent 53.7 (SD = 48.0) hours per month engaged in productive activity in 1990, whereas the typical 1995 Focus Class Member reportedly spent 80.5 (SD = 55.0) hours per month in productive activity. A correlated t test found these differences to be statistically significant, t(253) = 6.5, p = .000. Work-related hours increased from a mean value of 35.0 (SD = 45.3) hours per month to 74.4 (SD = 56.1) hours per month, t(253) = 10.2, p = .000, whereas school hours decreased from 18.7 (SD = 36.1) hours per month to 6.1 hours (SD = 26.5), t(253) = 4.9, p = .000. These changes can only be partially explained by the number of persons who lost school funding entitlements at the age of 21 because the total number of service hours was markedly higher in 1995 than in 1990. Table 4 reveals that much of this increase was associated with increased hours of service devoted to more complex vocational activities, such as sheltered workshop, supported employment, and competitive employment. Statistically significant increases were noted for sheltered employment, t(253) = 9.9, p = .000, supported employment, t(253) = 7.7, p = .000, and competitive employment, t(253) = 2.6, p = .000. Conversely, a significant decrease was noted for prevocational activity, t(253) = 2.0, p = .046. We note that prevocational services were defined as unpaid vocational activities; sheltered employment, as employment at less than minimum wage (adjusted for productivity); and supported employment, as employment for at least minimum wage, with supervision provided by a job coach.
In 1990, the data showed that only 50 out of 254 people (19.7%) had any integrated neighborhood experiences in the week prior to data collection. In 1995, the comparable figure was 247 (97.2%). Focus Class Members had 6.7 (SD = 3.4) outings per week.
Developmentally Oriented Therapy and Services
A dramatic increase was noted with respect to habilitative services. In 1990, the mean number of hours of habilitative service was 36.9 (SD = 46.3) per month, and this value increased significantly, t(253) = 10.5, p =. 000, to 187.2 (SD = 227.4) in 1995. A similar increase was noted with respect to nursing services, where the mean 1990 value was 9.0 (SD = 14.2) hours per month and the mean 1995 value was 31.2 (SD = 141.6) hours per month, t(253) = 2.53, p = .012. Closer inspection of the nursing data revealed extreme skew in the data, caused largely by 10 individuals who were reported to have around-the-clock nursing services. Because of this skew, the Wilcoxon nonparametric test was applied to the data. A significant Z score of 8.28, p = .000, revealed that the overall trend in nursing services was actually one of a decline in services. Table 5 provides a summary of the number of persons reported to be receiving various services. Significant results were found for homemaker services, = 2.4, p = .018, physical therapy, t(253) = 3.9, p = .000, psychotherapy, t = 4.0, p = .000, and audiology, t = 2.53, p = .012 (all dfs = 253).
Contact With Relatives
Persons who had no family were excluded from this analysis. Frequency of family contact was measured in both 1990 and 1995 using the Family Contact Scale. The mean score in 1990 was 7.5 (SD = 3.6) and in 1995, 10.8 (SD = 4.9). This difference was statistically significant, t(240) = 10.6, p =. 000, suggesting that the degree of family contact was greater in the community in 1995 than in Hissom in 1990. Approximately 17.4% of the 1990 participants fell into the category of having no family involvement. In 1995, only 8.3% of the participants fell into the category of having no family contact within the past year.
Use of antipsychotic medication decreased in use from 20.9% (n = 53) of the Focus Class Members in 1990 to 12.2% (n = 31) in 1995. In addition, the generally unacceptable practice of polypharmacy decreased from 25 instances to just one. Although the use of antipsychotic medication decreased, modest increases were noted for sedatives, anxiolytics, blood pressure medications, and antidepressants. It appears that there was a shift from the more broadly impacting, and arguably more dangerous, tranquilizers to other forms of psychotropic medicine. A chi-square test (year of data collection by antipsychotics, anxiolytics, or other medication) was statistically significant, χ2 (2, N = 76) = 25.4, p ≤ .01. Inspection of observed and expected values suggests decreased use of antipsychotic medication accompanied by increased use of other psychotropic medication. We noted that the number of Focus Class Members with prescriptions for psychotropic medication actually decreased slightly from 57 to 45. In contrast to the data on antipsychotic medication, increases were noted for anxiolytics (7.9% to 10.6%) and sedative/hypnotic medication (1.2% to 7.1%).
The perceived urgency of health care needs of the Focus Class declined from 1990 to 1995, t(253) = 2.1, p = .038, and the frequency of physician visits was reported to be lower in 1995 than in 1990, t(253) = 6.1, p = .000. Conversely, informants in 1995 reported slightly greater difficulty in securing medical services for members of the Focus Class, t(252) = 2.1, p = .039. Difficulty in obtaining medical services was reported for 7 Focus Class Members in 1990 and 19 in 1995. We note that although statistical significance was found for each of these variables, the absolute magnitude of these differences was quite small.
This study adds to the growing body of empirical literature that attests to the benefits of community living for persons with mental retardation. Members of the Hissom Focus Class, who were transferred from a large congregate care setting to small, community-based homes typically housing two or three people, evidenced increased skills, were more integrated with their communities and families, and received more services in the community. There can be little argument that the lives of the Focus Class Members improved over the 5-year period of study.
It is perhaps legitimate to ask whether the reliance on small living arrangements has resulted in increased loneliness and isolation. There are several findings that would seem to refute this notion. For example, our data show increased contact with families. In addition, persons engaged in an increased number of activities in the community; and almost two thirds of the individuals who responded to interview questions reported that they socialize with friends at least once a week.
Increased adaptive behavior has been reported in many deinstitutionalization studies (Conroy & Bradley, 1985; Conroy et al., 1982); perhaps the area of integration is more interesting, particularly when one considers that the deinstitutionalization movement is essentially a civil rights movement. Results of our study suggest that Focus Class Members not only spent more time engaged in recreational and domestic activities in the community, they became more involved in the society of the workplace. More were involved in the work world, even when the introduction of school graduates into the workplace is considered. In addition, work activities in the community in 1995 involved greater percentages of persons in competitive and supported employment. This is similar to the findings of Blanck (1995), in an analysis of Oklahoma data. We consider this change to perhaps be the most significant social impact of the study. Economic intercourse is the basis of most social integration, and as the Focus Class Members become increasingly able to participate in economic intercourse, they become more a part of society and less a ward of society.
It is in this area of economic intercourse that it is perhaps most reasonable to look for integration. Economic intercourse is a primary vehicle for social integration among persons without disabilities. Our data, although positive to the extent that they suggest increased economic integration in terms of greater and more complex levels of employment, do raise an area of potential concern. Even with the increases noted in the 1995 data collection, the average participant in this study engaged in productive activity only about 20 hours per week, or about half time. Given that it is common for individuals without handicaps to work in the neighborhood of 40 to 50 hours per week, it is clear that there is considerable room for improvement in this area.
Can we say that the actual community independence increased subsequent to movement to the community? Unfortunately, that question is beyond our scope in this study. We demonstrated that people are working and recreating in the community with greater frequency, but we cannot determine whether community independence increased.
The improvement in challenging behavior was modest, albeit statistically significant. It is likely that the low number of persons without challenging behaviors limited the challenging behavior scores in both 1990 and 1995. One would assume that the minimal levels of challenging behavior contributed to successful integration; however, our analyses do not permit that conclusion. One interesting aspect of the findings is that each of the three significant items (rebellious behavior, runs away, and is nonresponsive) typically represent behaviors that are reinforced by escape from unpleasant situations. The decrease in what may be escape-motivated behavior, although possibly a function of maturation, still leads one to question whether community environments invite less escape behavior. Of course, if this is true, it is not necessarily a positive outcome, in that a demand-free environment invites little escape but promotes little development. This remains an area for future investigation.
Health care appeared to be the only area in which community scores did not exceed congregate care scores. Focus Class Members saw physicians less frequently in the community; however, staff members' reports suggest that the urgency of medical needs was less. The validity of such judgments made by direct care staff is open to question in both settings, particularly in light of the modest correlation (.35) between 1990 medical need urgency and 1995 medical need urgency. In any case, the differences between the 1990 and 1995 ratings are quite small. Similarly small, but statistically significant decreases were detected with respect to physical therapy and audiology services
Medication practices appeared to change over the 5 years. The use of antipsychotic medication (i.e., tranquilizers) dropped from almost 21% of the Focus Class Members to just 12%. Corollary increases were detected with most other psychotropic medications. Diagnostic information was not included in this study, so it is difficult to judge the appropriateness of prescription practices in either 1990 or 1995. Perhaps the most we can say is that the pattern of psychotropic medication use among Focus Class Members in the community is less than that found throughout the overall Oklahoma mental retardation system and markedly below the level found in Oklahoma institutions (Spreat et al., 1997).
It is always tempting to attempt to suggest reasons for observed outcomes. In this study, for example, it is noticeable that both service provision and variety of outcome measures increased over time. It would be improper, based on this study, to do anything more than hypothesize that services and outcomes were linked. We lack the necessary controls that permit causal inferences. Results of some studies (e.g., Fiorelli & Thurman, 1979) suggest that increased opportunity is related to increased adaptive behavior in the community; nothing in our study would refute that assertion. We caution readers to avoid overgeneralizing from our data. We can best avoid the politicization of outcome research by maintaining a narrow interpretation of data.
Additional caution must be urged because our experimental design is essentially a pre–post design with no comparison group. There are competing explanations for our findings other than just the benefits of community living. Our analysis of adaptive behavior data presented in a recurrent institutional cycle design would seem to suggest that community placement was responsible for at least the observed changes in adaptive behavior. Perhaps in the future researchers should extend the use of the recurrent institutional cycle design to other outcome measures.
In this study of the closure of Hissom Memorial Center, we examined multiple indicators of outcome. When one examines a large number of indicators, the risk of Type I error is magnified. We acknowledge this as a greater concern if the consistency, magnitude, and direction of differences were not so uniform across the outcome indicators.
One irrefutable outcome of the closure of Hissom Memorial Center is the fact that the closure was accomplished entirely by movement of persons to community-based living situations. Although this has happened previously in Vermont, where the only institution was closed, many other institution closures have involved the transfer of individuals to both community and institutional settings. For example, the 1992 closure of the Johnstone Research and Training Center in New Jersey was achieved only because well over half of the persons were simply moved to other developmental centers (Apgar, Cook, & Lerman, 1998). Sonoma Developmental Center in California is being closed, but it is anticipated that many of the people there will be going to other large congregate care facilities. Although many institutional closures do rely on both community and other institutional resources, it must be recognized that the number of persons who live in public residential facilities continues to decline (Amado, Lakin, & Menke, 1990).
The closure of Hissom was unique not only because of its complete reliance on community living arrangements, but also because of the size of the living arrangements that were selected. As noted above, practically all of the Focus Class Members live in homes by themselves or with just one or two roommates. The state that employed the smallest community settings prior to Oklahoma was Pennsylvania, where the dominant model of the 1970s and 1980s was the Community Living Arrangement, or CLA. The CLA was limited to three people, typically assisted by staff working across three daily shifts. Oklahoma's Focus Class Members who are in homes with three residents may be experiencing situations similar to Pennsylvania's CLAs; however, the majority of the Focus Class Members in Oklahoma have moved into settings that are even smaller.
Moreover, it is worthy of emphasis that the Focus Class Members are people with very serious challenges. Of those for whom a level of mental retardation has been assigned, 73% were labeled as having severe or profound mental retardation. Classically, these labels are used to refer to people whose IQs fall below 40. One of the criticisms of supported living in the past has been that it has been reserved for persons with lesser cognitive challenges rather than those who have severe disabilities. That criticism is not valid in Oklahoma.
Authors:James Conroy, PhD, President, Anita Yuskauskas, PhD, and Martin Elks, PhD, Research Associates, Center for Outcome Analysis, Narberth, PA 19072. Scott Spreat, EdD, Executive Director, Woodland Center for Challenging Behavior, Woods Services Inc., Langhorne, PA 19047. firstname.lastname@example.org.