Behavior Management Quarterly
Vol. 6, No.2 Spring 1990
IS DEINSTITUTIONALZATION A MISNOMER?
David L. Hayter
Clinton Valley Center
The purpose of this paper is to examine a few of the basic assumptions surrounding the issue of institutionalization. The value of normalization is supported, in terms of residential status. The implementation of this process is questioned. The conclusion emphasizes that as mental health practitioners, we must implement the concept of normalization in the spirit in which it was envisioned. In this respect, the goal of communatization of the mentally impaired (i.e., MI & DD) should become the most paramount consideration for effective implementation of this effort._________________
Over the past decade, the mental health system has been engaged in a process of placing individuals from institutions into the community. This transitional process is known as deinstitutionalization. The principles of deinstitutionalization are based on a number of premises. First, environmental factors play an important role in normal behavior; thus, it is believed that a more normal environment will produce more normal behavior. The meaning of normal or natural environment could be characterized by a life-style similar to that of the rest of society. Secondly, the premise that placing the individual in an environment that is the least restrictive will foster developmental growth. From these basic premises, the mental health system has embarked upon an odyssey of interpreting, designing, and implementing this transitional process.
From my experience, I believe the process of deinstitutionalization has undergone an evolutionary development. Although, in some cases the spirit of deinstitutionalization, as well as its philosophy, remains elusive when compared to actual practices in the mental health field.
The purpose of this article is to focus attention upon the value of a communitization continuum versus deinstitutionalization. Analyses of this issue covers assumptions of deinstitutionalization, quality of life, social support, friendships, adaptive skills, staffing and restrictiveness.
Assumptions of Deinstitutionalization:
In a recent article by Landesman and Butterfield (1987), they concluded that the least restrictive community living setting is a goal for most individuals with mental retardation. Thirteen years earlier, Denner (1974) reported "these days virtually everyone finds the state hospital to be an unacceptable placement for the chronic mental patient.” (p. 163). These statements epitomize the general philosophy surrounding deinstitutionalization. Although, the sentiments have become more moderate recently, the concept of deinstitutionalization is still capable of creating a heated debate. For instance, "The proponents of deinstitutionalization agree in regarding all institutions as places of last resort, in which retarded persons should reside only under the most exigent of circumstances. Some policies urge closing the institutions altogether. According to this view, instead of institutions, the retarded person (mentally ill). should always reside in the community...," (Throne, 1979, p. 171). As a result of evaluative research the deinstitutionalization proponents have noted benefits such as better care and treatment of the mentally impaired individual. In the recent research of DeRisi and Vega (1983), they note that deinstitutionalization has had beneficial effects by eliminating various classes of patients which has virtually abolished the "back-ward" stereotype towards mental illness and the developmentally disabled that has prevailed for centuries.
Conversely, critics have attacked deinstitutionalization as having failed in its mission over the past couple of decades. In a report by Gralnick (1985), he wrote: “Deinstitutionalization has failed to cure the so-called evils of the state hospital system. Community care has not lessened the incidence of mental illness or the number of mentally ill. It has not diminished the number of chronically ill or significantly reduced the mistreatment and suffering of the mentally ill. Under deinstitutionalization, patients do not receive better treatment and are not provided a more promising future. (p. 739)."
Sylvester and Bean (1989) recently stated that "for years, high rates of recidivism, or state psychiatric readmissions, were seen as signs of failure on the part of the hospital and the affiliated community mental health system," (p. 109). In contrast, Goldman, Adams, and Taube (1983) concluded from their study "the evidence suggests that whole new classes of previously untreated patients are now using services that were not available ten to twenty years ago, and that the deinstitutionalized patient has failed to receive adequate community care.” (p. 130). These statements indicate at least two problems, which will need to be addressed in the evaluation of the deinstitutionalization movement. First, is recidivism and readmission a true measure of the failure of deinstitutionalization? Secondly, with the advent and accessibility of community mental health programs, have they actually tapped a previously unserved population in need of mental health services? If this is found to be true, then this fact could help elucidate some of the findings regarding the success or failure of deinstitutionalization. Needless to say, the whole issue of deinstitutionalization between both the proponents and critics have become emotional and value laden. In a report by Landesman-Dwyer (1981), she reported that the terms institution and community have become increasingly value-laden while their empirical distinction has diminished. The pervasive belief that smaller is better is widespread. The usual comparison of large institutional hospitals versus small group homes indicates that the occurrence of depersonalizing practices is more frequently found in institutions (Balla, 1976; Baroof, 1980). However, it has been found that within a certain residential setting, size alone was not related to quality of care (e.g., Bercovici, 1981; Hull and Thompson, 1980; King, Raynes, and Tizard, 1971; McCormack, Balla, and Zigler, 1975). In addition, a few smaller family style homes were evaluated as being more restrictive for the residents than larger board-and-care settings within similar geographical regions (Bjaames and Butler, 1974; Butler and Bjaames, 1978; Edgerton, 1975).
To gain a perspective of what deinstitutionalization attempted, we must return to the fundamental tenets behind the movement. In studies by Willer and Intagliata (1982), they found that normalization is the guiding principle for deinstitutionalization. Wolfensberger (1970) explained this concept of normalization by stating that the developmentally disabled individual should be exposed to a social environment that is more likely to produce or maintain normative behavior. Within the deinstitutionalization movement, this implicit assumption has been made explicit in several court decisions, enforcing that the less restricted, more normalized environment of the community setting is more consistent with the rights of mentally retarded (and mentally ill) persons (Willer, Scheerenberger & Intagliata, 1978).
In a later study by Willer et al. (1982) they clearly, stated the problem with deinstitutionalization was: "A possible misinterpretation of this assumption would be that all community settings are better than institutions for the mentally retarded (mentally ill) person by virtue of the fact that they are in the community," (p. 588). A cogent argument supporting this concept is put forth by Willer et al. (1982) who stated that virtually all community settings are, by definition, more normalized than institutions. One might argue that deinstitutionalization is always successful if the person moving out of the institution and can be maintained in the community. These arguments stimulated considerable amounts of research on the assumptions of deinstitutionalization. Are deinstitutionalized residents...generally better off in the community? Numerous researchers have explored this question with surprising results.
Quality of Life:
In a study by Crawford, Aiello, and Thompson (1979) they warned that researchers have generally assumed that deinstitutionalized persons are "better off” simply because they are living in normal community settings. In contrast, it has been argued that a normalized environment may be necessary but not sufficient for success and that more quality of life in the community needs to be examined. For instance, Sylvester and Bean (1989) recently concluded that: "research on prediction of client community tenure is too simplistic and, in fact, incomplete unless client quality of life is simultaneously considered," (p. 119). Furthermore, Grusky and Tieiney (1989) also emphasized the importance of evaluative research by concluding, that "the effectiveness of service delivery systems at the community level is one of the most important questions in the field of mental health services at this time,” (p. 19).
To examine this issue further, a definition of what constitutes a residential facility community placement may be helpful. Included here is the definition of a community residential facility from the United States Code of Federal Regulations: "Any community based living quarter(s) which provides 24-hour, 7 days-a-week responsibility for room, board, and supervision of mentally retarded persons as of June 30, 1977 with the exception of: (a) single family homes providing services to a relative; (b) nursing homes, boarding homes, and foster homes that are not formally state licensed or contracted as mental retardation service providers; and (c) independent living (apartment) programs which have no staff residing in the same facility.” (Bruininks, Hauber, & Kudla, 1980, p. 471).
From this definition the question arises concerning differences between the institution and a community residential facility in terms of the “care provided.” One distinction of deinstitutionalization is the physical movement of individuals from the institution to the community; preferably the community of their original residency. The reason for this placement decision is for the resident and their family to have greater access to each other. The assumption here is that both parties want to have greater access to each other. But support for this assumption is weak. My experience seems to support this premise in Balla's (1975) research, he concluded that "there is minimal evidence to suggest that parental and community involvement with retarded residents may be enhanced in community-based facilities.” (p. 122).
Furthermore, it was found that sometimes continued family involvement with adult offspring has been associated with some counter-productive effects. Landerman-Dwyer et. al. (1978) found that group home residents who maintained active contact with their parents run the risk of being socially isolated in their group-home or residential setting. In addition, in an early study by Willer and Intagliata (1981), they found that for both family-care and group-home settings, the amount of family contact and overall social support of residents was determined more by the attitudes of individual care providers and the efforts of these individuals to encourage and engineer such social contacts. From the evidence presented, it appears that there is little difference in family contact in the community versus the institution. Furthermore, studies have indicated that family contact and social support systems were engineered by care-providers more so than simply proximity.
Although, family relationships have not proven to be a special social support system for our patients, the increased use of socialization as a support system has been seen from my experience to be necessary for a successful transition to the community. Therefore, placement of an individual into the community must consider the degree of socialization available as an important variable in the determination of a residential placement for the deinstitutionalized person.Friendships (Social Support Systems):
Furthermore, in social interaction, the mental health system needs to foster homogeneous matches of clients to promote a future mutual social support system. This becomes even more important when one assesses that individuals have minimal family involvement and depend upon staff to provide them with social support.
A study by Schalock et. al. (1981) concluded that "persons reported that they were proud of their apartments and felt good about doing their own thing, but the same group frequently indicated they would like to have more friends. The friendship patterns appear to be "program specific, in that clients continue to associate after independent placement with other clients or program staff," (p. 175). A report by Gollay et. al. (1978) warned that the emphasis on education and training has overshadowed issues regarding the social life of retarded individuals. In recent studies by Berkson & Romer, (1980) and Landesman-Dwyer et. al. (1979, 1981), authors concluded that social decision making and friendships need to be considered when individuals are placed in community residents.
Another emphasis in mental health treatment settings is to promote independence of the deinstitutionalized individual by focusing upon training adaptive living skills. Independence is one of our central values as a society. In support of this position Schert and Macht (1979) have stated that "Social progress as a civilization can be measured by our ability to plan for and develop individualized care for those in need, care that promotes independence whenever possible," (p. 604). In order to promote independence and developmental growth with the mentally retarded and mentally ill, the social environment is an important and essential variable to consider. Recent studies by Conroy, Efthimiou and Lemanowicz (1982) have found “Services for mentally retarded individuals (mentally ill) are increasingly adhering to the developmental model stating that all clients can learn to function more independently if provided with more adequate environments. Of course the primary purposes of these services are to foster such developmental growth,” (p. 581).
When evaluating residential placement successes, the training of certain adaptive certain adaptive behaviors seems to be important. Current researchers Schalock, Karan, and Harper, (1980) and Schalock, Harper, and Genung, (1981) have concluded that agencies can maximize placement success by initially stressing work skills, appropriate social behavior, and family involvement. Once the individual's behavior is stabilized, client development and program success can be maximized by training in a wide area of behavioral skills and establishing a continuum of residential/training options on which the client can further develop those skills.
In addition, it is of interest to note that recent studies have found higher adaptive competency ratings in community clients versus the same aged-matched institutional clients. Eyman and Arndt (1982) responded that “The fact that there was a slight increase in adaptive behavior competence between the ages of twenty and fifty for community clients and a corresponding downward trend between these ages among institutionalized residents cannot be explained at this time," (p. 348). Among these types of studies, the findings indicate the most improved adaptive skills of the deinstitutionalized individual were in the area of socialization and daily living skills. In support of this position, Conroy et. al. (1982) and his group responded that the most consistent finding of investigators who used adaptive behavior measures, Aanes and Moen (1976) and Close (1977) was that deinstitutionalized clients made gains in the basic area of self-help, socialization, and communication.
At this time, the very nature of community placement versus institutionalization seems to provide more opportunities for many various types of adaptive development. In a study by Hemming et. al. (1981) of residential placements they found significant and consistent improvement in daily living skills in community placed residents versus those who remained in the institution. These findings have also been confirmed by later studies showing improvement in independent functioning, socialization, and domestic activities. This finding was further confirmed by Conroy et. al. (1982), where in a re-test situation of all subjects 6 months after the community placement, the data showed that the community, residents made significant gains in independent functioning, socialization, and domestic activity. Furthermore, Antonelli (1982) concluded that: "Also noteworthy are the differences in advanced communication and community living skills learned by the community placed population versus those acquired by the institution residents. In conclusion, it is felt that this extreme contrast can be attributed to the wealth of opportunity for exposure to and the practice of these skill areas,” (p. 7).
The argument that higher staff to client ratios was the factors in clients adaptive behavioral improvements was found to be a significant factor in the deinstitutionalized individual's success. But simply higher staff-ratio was not the only function of these improvements in adaptive functioning of the developmentally disabled. Hemming et.al. (1981) found that the increase in number of staff-resident interaction was not a function of simply increased staff-resident ratios, since the interactions were corrected for staff-resident ratios and was still found to be significantly greater in the units than in the larger institutions. In this regard, research indicates that the amount of programming hours a client receives was greater in the community versus in the institution. Recent research indicates that community based clients appeared to receive more service in community settings than did their matched peers at the institution. The average number of days programming hours per day for deinstitutionalized clients was 6.3 and for stayers, 2.8 (Conroy, et. al., 1982). It is the belief of some researchers in the field that high adaptive function, which promotes independence, is truly the goal of the deinstitutionalization movement. Conroy, et. al. (1982) has stated that: "The higher level of adaptive behavior displayed by the clients after moving to community settings represents, in our view the essence of the human services: reduced dependency on others," (p. 586). Longitudinal studies have indicated continued progress in community placement. In this regard the data highlights that:
We should also be aware of the continued importance of demonstrated behavioral skill in successful community living in settings other than group homes. The most recent data indicates that after 5 years, behavioral skills in personal maintenance, clothing care and community utilization demonstrated during training were still related significantly to placement success. Contrary to the previous study, the present data indicate that with increasing placement duration, skills in food preparation, time management (personal schedule and leisure time), and communication became increasingly important. Even though tested intelligence and functional academic's (money, banking, time concepts) were not statistically related to placement success, the assistance provided by case-management staff members was primarily in activities requiring those skills, e.g., balancing checkbooks, keeping appointments, using medication, and shopping (Schalock et.al. 1981, p. 174).
Some researchers believe that the least restrictive nature of community placement promotes an increase in well being even in clients that will never move totally to independent functioning and living. For instance, Lamb (1981) found that not all individuals are equally able to benefit from community-based rehabilitation programs, but even those patients who do not improve seem to experience an increased sense of well-being from living in the community residential settings which are generally less restrictive than within institutions. Furthermore, Lamb stated, "We must not underestimate the value, from a humanitarian stand point (even apart from our regard for the patients rights), of simply giving these basically dependent patients their liberty and allowing them free movement,” (p. 109).
In light of the realization that not all individuals will become totally independent within the community, it becomes important to consider what types of institutions and programs are then appropriate. For instance, this entire issue has been recently addressed (Bickman & Dokecki, 1989; Perkey, 1989; Shadish, 1989) with regards to the overall trend of privatization of mental health services (e.g. adult foster care homes, group-homes, public hospital, private psychiatric facilities, nursing homes, etc.). In this regard, Throne (1979) has stated, "a human community is composed of people and their institutions. It is impossible to imagine a community of people without institutions they really are decrying, in the name of deinstitutionalization, not all institutions..." (p. 171).
As Begab (1975) cautioned (cited in Landesman-Dwyer, 1981):
Congregate forms of care have certain characteristics, which commend them, others that condemn them. The issue confronting society is to specify these characteristics and their impact on child (adult) development and to adjust programs and structures accordingly. In this effort, it must always be kept in mind that the heterogeneity of the retarded (mentally ill) population and the diversity of their needs militate against any single pattern or program (p. 227).
In a study by Schalock et. al. (1981), they concluded that deinstitutionalization is more than simply placing a client into a community-based residential program; but rather, deinstitutionalization should encompass a continuum from the institution, to community group-home programs, to semi-independent apartments then to independent placements. These findings have also been demonstrated by other researchers such as Apolloni, Cappuccilli, & Cooke, 1980: Fidelman, 1980; Hayter, 1986; Landesman-Dwyer, Sulzbacher, Keller, Wise, and Baatz; Landesman-Dwyer, 1981 who demonstrate that "given the right program, most individuals will show beneficial growth, regardless of the degree of their prior impairment," (p. 228). Finally, Okin (1985) found that "Most patients are now living in the community and do not wish to return to state hospitals," (p. 744). Thus, the evidence suggests; the importance of type of residential placement is paramount to the success of deinstitutionalization.
Although Shore and Shapiro (1979) warned that "If the hospital is isolated from community service systems, it will function predominantly as a dumping ground for patients whom no other program can or wants to manage," (p. 606). After all, the fact that most individuals currently entering state facilities are either difficult to manage or indigent individuals must be a very real consideration for deinstitutionalization planning in the future. Furthermore, Craig and Laska (1983) have concluded that: "The diminishing likelihood that adequate suitable community placement and support system will be developed for the long-stay patients currently residing in state hospitals suggests the need for a shift from emphasis on the policy of "deinstitutionalizing" individual patients to one of the "communitizing" the state hospital...A further step toward integrating the state hospital into the fiber of its surrounding community (pp. 621-622).
In conclusion, I believe the evidence indicates that having community access and freedom of movement is important in the care and treatment of both the mentally ill and the developmentally disabled. Most individuals seem to benefit from placement in a smaller residential in terms of learning adaptive functional skills such as improved socialization, communication, and advanced daily living skills. Furthermore, factors involving the community placement success do not necessarily correlate to a residential setting, parental involvement or solely with higher staff-client ratio. What does seem to be important is the opportunity for learning skills in adaptation functioning, consideration of a social-support system among the individuals peers, as well as continuing support for those individuals in the community where needed. 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