Desktop versionMobile Version
OpenEdition Books

A Quarter-Century of Normalization and Social Role Valorization

 | 
Robert J. Flynn
, 
Raymond Lemay

Part 4: Links Between Normalization, Social Role Valorization, Social Science Theory, and Empirical Research

12. Integration of persons with developmental or psychiatric disabilities: Conceptualization and measurement

Robert J. Flynn und Tim D. Aubry

Volltext

1The integration of people with disabling conditions is a key corollary of Normalization and Social Role Valorization (SRV). Although often imprecisely defined, integration has been a central, even paradigmatic, objective of social policy in many countries for much of the last quarter-century. It also remains a topic of enduring relevance. Within the last few years, for example, the Association internationale de recherche scientifique en faveur des personnes handicapées mentales (AIRHM) has published the proceedings of a conference on social integration in mental retardation (Ionescu, Magerotte, Pilon, & Salbreux, 1993), and the Office des personnes handicapées du Québec (1994) has published the proceedings of another international conference on integration in virtually every disability subfield.

2Integration has been an explicit goal of legislation in a number of countries, as the following examples illustrate. In the United States, the adoption in 1987 of the federal Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987 (Pub. L. No. 100-146) made integration, productivity, and independence core criteria for assessing service effectiveness. Integration was defined as follows in Pub. L. No. 100-146:

the use... of the same community resources... and participation in the same community activities in which nondisabled citizens participate, together with regular contact with nondisabled citizens, and the residence... in homes or in home-like settings which are in proximity to community resources, together with regular contact with nondisabled citizens in their communities. (§ 102[8], cited in Davidson & Adams, 1989, p. 299)

3Davidson and Adams (1989) affirmed that the concept of integration in Pub. L. No. 100-146 was inspired directly by the Normalization principle, particularly Wolfensberger’s (1972) and Nirje’s (1976) contributions.

4In Quebec, integration began as a recognizable movement around 1975 (Bolduc, 1989), with the 1980s marked by an increasing application of the principles of Normalization, SRV, and integration. In 1984, the Office des personnes handicapées du Québec, a government body, advocated a global policy of impairment prevention and social integration with the publication of À part... égale. L’intégration sociale des personnes handicapées: Un défi pour tous. The overall objectives of this influential report were adopted by the Quebec government, and in 1988, a working group within the Quebec Ministry of Health and Social Services published a policy statement and action plan for services in mental retardation. As Bolduc (1989, p. 5) noted, this official document emphasized SRV, social integration, community participation, and the conversion of institutional resources into individualized, community-based services.

5In Belgium, in 1995, the government of the French-speaking part of the country, La Wallonie, made integration a cornerstone of its policies concerning persons with disabilities (Haelewyck, 1995-1996). According to Haelewyck, however, although a range of physically integrated residential options exist in Europe, integration practices are not often widely applied.

6In light of the centrality of the concept of integration for the past quarter-century, it is surprising that little systematic attention has been given to defining or measuring it clearly. As a result, there is little consensus on its exact meaning, essential components, or boundaries (Storey, 1989). The present chapter attempts to bring a measure of order and clarity to this rather confused situation by reviewing how integration has been conceptualized and measured in the literature of developmental and psychiatric disability and by suggesting how the concept might most usefully be defined and investigated.

7The largest number of papers on integration that we located through PsycINFO, ERIC, and manual searches were related to mental retardation and developmental disabilities, no doubt because of the prominence of Normalization and SRV in this field. We found a smaller but still sizable number of references to the concept in the literature on psychiatric disability, but relatively few in that devoted to physical disability. We thus limited our review to the literature on mental retardation/developmental disabilities and psychiatric disabilities. To keep our task within manageable bounds, we reviewed a representative rather than exhaustive set of books and papers on the topic of integration. We also decided to focus mainly on the integration of adults into community living. Specialized topics (e.g., children’s integration into schools, or adults’ integration into employment, leisure, art, or religious institutions) are thus beyond the scope of the chapter.

8In the first section, we survey the main ways in which integration has been conceptualized and measured in the literature of mental retardation and developmental disabilities. To anticipate our findings, physical and social integration have usually (but not always) been distinguished from each other, with physical integration seen as a precondition but not a guarantee of social integration. Social integration has most often been defined as referring to social interaction and relationships between human service clients and ordinary citizens, although at least one definition also includes interactions among human service clients within its purview. In the second section, we review the ways in which integration has been conceptualized and measured in the literature of psychiatric disability. As well, findings on the community, facility, and individual-level correlates of integration are presented in this section. Finally, in the third and concluding section, we make some suggestions for conceptualizing, measuring, and conducting research on integration.

1 CONCEPTUALIZATION AND MEASUREMENT OF INTEGRATION IN THE LITERATURE ON MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES

9Of the writers on integration encountered in our review of the developmental disabilities literature, Wolfensberger is the one who has taken the most pains to define the term clearly. His original and evolving conceptualization has served as a touchstone for other writers on integration and is thus an appropriate starting point for this review.

1.1 WOLFENSBERGER’S EVOLVING CONCEPTUALIZATION OF INTEGRATION AS PHYSICAL AND SOCIAL IN NATURE, AND AS PERSONAL SOCIAL INTEGRATION AND VALUED SOCIAL PARTICIPATION

1.1.1 WOLFENSBERGER’S NORMALIZATION-BASED DEFINITION OF PHYSICAL AND SOCIAL INTEGRATION

10In The Principle of Normalization in Human Services, Wolfensberger (1972) formulated one of the first and what was to prove one of the most influential definitions of integration, which he saw as composed of two major elements, physical and social integration. Physical integration was conceptualized as a precondition of, but fundamentally less important than, social integration:

The two integrations: physical and social
If integration is one of the major means for achieving and acknowledging societal acceptance, as well as for accomplishing adaptive behaviour change, then we must distinguish between and elaborate upon its dimensions and components. First of all, let us define integration as being the opposite of segregation; and the process of integration as consisting of those practices and measures which maximize a person’s (potential) participation in the mainstream of his culture.
For a (deviant) person, integration is achieved when he lives in a culturally normative community setting in ordinary community housing, can move and communicate in ways typical for his age, and is able to utilize, in typical ways, typical community resources: developmental, social, recreational, and religious facilities; hospitals and clinics; the post office; stores and restaurants; job placements; and so on.
Ultimately, integration is only meaningful if it is social integration;
i.e. if it involves social interaction and acceptance, and not merely physical presence. However, social integration can only be attained if certain preconditions exist, among these being physical integration, although physical integration by itself will not guarantee social integration...
Social integration takes place on the “person level” and involves the close interaction of (potentially) deviant individuals with those who are not so perceived. However, physical integration generally involves buildings or at least “settings,”
i.e. a physical setting which permits or facilitates social interaction. In the context of this discussion, the building will probably be one in or through which human services are mediated.
Physical integration (or segregation) of a service facility is determined by four factors to be discussed below: its location (in the sense of distance from resources and social groupings; its physical context to other facilities and settings; access to it; and its size, in the sense of number of (deviant) persons grouped together in or by the building. This fourth point is sometimes also referred to as dispersal...
Integration can be facilitated (or inhibited) not only by physical but also by social circumstances. A service could conceivably be optimally integrated physically, and yet suffer from extensive social segregation. For instance, despite optimal location, such factors as agency policy, service structures, and/or social circumstances might keep a deviant person out of the cultural mainstream, and segregated from normative and normalizing social intercourse. Thus, a person needs not only to be
in but also of the community. (Wolfensberger, 1972, pp. 47-48)

11Wolfensberger and Glenn (1975, 1989) operationalized their Normalization-based conceptual definitions of physical and social integration in specific PASS 3 ratings. Data collected with PASS 3 in North America and Europe indicate that physical integration is typically much more satisfactory than social integration. For example, in a sample of 626 programs evaluated with PASS 3, located in the USA (57%), Canada (32%), and France (10%), and serving mainly (65%) persons with mental retardation, Flynn, Guirguis, Wolfensberger, and Cocks (in press) found that the mean level of attainment on two PASS subscales measuring physical integration, namely, setting (M = 73% of the maximum possible weighted score) and accessibility (M = 71%), was well above the 50% level that the authors of PASS consider “minimally acceptable” service quality. In contrast, an analysis of the same sample of programs carried out for the present chapter showed that the mean score on the single PASS 3 rating most directly assessing social integration, Socially integrative social activities, was much below the minimally acceptable level (M = 23% of the maximum possible weighted score).

1.1.2 WOLFENSBERGER AND THOMAS’S SRV-BASED DEFINITION OF PHYSICAL AND SOCIAL INTEGRATION

12Subsequently, in PASSING, Wolfensberger and Thomas (1983, 1989) defined integration, both physical and social, in even more precise terms:

INTEGRATION: The open participation of people with other people in culturally normative amounts, settings, and activities. The term is used mostly to refer to the participation and inclusion of devalued people with non-devalued ones. Integration can range from zero to extensive, and can also be thought of as being both physical and social.
Physical integration consists of the physical presence of a (devalued) person or persons in ordinary settings, activities, and contexts, where non-devalued people are also present, but such physical integration does not necessarily mean that the devalued person or persons actually have interactive contact with the non-devalued citizens. For example, a group of handicapped children could be physically integrated into a typical school for ordinary youngsters, and although the children would share the same facility and perhaps even attend some of the same functions (such as school-wide assemblies and athletic events), the handicapped children might not have any genuine social contact with their fellow non-handicapped students.
On the other hand,
social integration consists of participation by a (devalued) person or persons in social interactions and relationships with non-devalued citizens that are culturally normative both in quantity and quality, and that take place in normative activities and in valued, or at least normative, settings and contexts. Thus, social integration goes far beyond the mere physical presence of both devalued and non-devalued people in the same physical space. (Wolfensberger & Thomas, 1983, p. 18)

13Wolfensberger and Thomas (1983, 1989) operationalized their conceptual definitions of physical and social integration in specific PASSING ratings. As with PASS 3, data collected with PASSING suggest that human service programs are much better at achieving reasonably satisfactory physical integration than social integration. For example, in a sample of 633 PASSING evaluations, conducted in the United States (54%), Canada (37%), Australia (6%), the UK (2%), and New Zealand (1%), and serving persons with developmental disabilities (39%), “mixed” disabling conditions (36%), psychiatric disabilities (10%), aging (7%), or physical disabilities (3%), Flynn, Guirguis, Wolfensberger, & Cocks (in press) found that the mean scores on two PASSING subscales assessing physical integration, setting (M = 47%) and accessibility (M = 55%), were at approximately the level (50% of the maximum possible weighted score) that the authors of PASSING view as constituting “minimally acceptable” service quality. In contrast, analyses of the same sample of programs conducted for the present chapter revealed that the mean scores on the two individual PASSING ratings that are the most direct measures of social integration, Image-Related Other Integrative Client Contacts & Personal Relationships (M = 20%) and Competence-Related Other Integrative Client Contacts & Personal Relationships (M = 9%), were much lower.

1.1.3 WOLFENSBERGER’S MOST RECENT DEFINITION OF (“REAL”) INTEGRATION AS “PERSONAL SOCIAL INTEGRATION AND VALUED SOCIAL PARTICIPATION”

14Recently, Wolfensberger (1998a) provided an updated version of his definition of integration. In presenting it as one of 10 major themes underlying SRV, and in contrasting it with the rejection, distantiation, and segregation that are often imposed on societally devalued people, Wolfensberger defined integration as follows:

From an SRV perspective, “integration” means “personal social integration and valued social participation.” This in turn would require (a) valued participation, (b) with valued people (c) in valued activities that (d) take place in valued settings.
Among the things this would imply is that as much as possible, devalued people would be enabled: to live in normative housing within the valued community, and with (not just near) valued people; to be educated with their non-devalued peers; to work in the same facilities as ordinary people; and to be involved in a positive fashion in worship, recreation, shopping, and all the other activities in which members of society engage.
If a person is already in devalued roles or is at risk of role degradation, then the more this person is observed in places frequented by valued people in society, in actual association with people in valued roles, and in activities that are valued (e.g., active or productive ones), the more role-valorization benefits are apt to accrue to that person, often first in the image domain, and sometimes also, and derivatively, in the competency domain. This is especially apt to be true if the valued people associate with that person without feeling coerced or resentful about it.
In order for personal valued social integration of a devalued person to be truly successful, a number of supports must be present and operational, including ideological and administrative supports, people who can competently transact the integration, positive imaging of the persons to be integrated, supports that will enable the person to remain in the community in the first place from childhood on, and a comprehensive continuum of service options for people in need throughout their lives, including sufficient fall-back options in case one level of integration is unsuccessful.
We emphasize most emphatically that what today is commonly called “inclusion” is also very often
not social role-valorizing integration, because one or more of the four elements of such integration (a, b, c, or d above) is lacking. For instance, a person of devalued identity could be engaged with valued people in devalued activities (e.g., pornography) in devalued settings (e.g., a drug house), and the person’s participation could be either valued or devalued. Even the placement of impaired children in regular school classes—commonly called “inclusion”—could lack the element of valued participation. In fact, it is often because the presence of a devalued person is coerced that this presence is neither desired nor valued. While this kind of “inclusion” certainly has some arguments in its favor, it would not meet the SRV criteria of integration, and one should not pretend otherwise. (pp. 123-124)

15Finally, Wolfensberger (1998b) recently provided further clarification of his definition of (“real”) integration as “personal social integration and valued social participation,” in contrasting it with “mainstreaming” and especially with “inclusion”:

The column editor [i.e., Wolfensberger] never used the term “mainstreaming” when it was popular, nor the term “inclusion” that replaced it almost overnight.
The term “mainstreaming” was popular from ca. 1970-1990. One author surveyed the literature, and found 40 different meanings of the term. It was used to mean everything from a person residing in an institution with 1000 other handicapped residents, to putting a mentally handicapped offender into a “generic” prison among other offenders, to dumping a person without supports leaving the person to sink or swim, all the way to what we mean by real integration. The term “inclusion” succeeded the term “mainstreaming” almost overnight about 1990 as a favorite craze term. Sometimes, the term “total inclusion” is even used. Inclusion is also a very imprecise construct. It
could mean what we mean by real integration, but more often, it means that the devalued person is in the midst of devalued people—perhaps even with heavy-duty supports—but regardless whether the surrounding others are tolerant, supportive, and accepting or not. It is thus based more on a “right-to-be-there” concept than a “wanted-and-valued-in-participation” concept...
In our SRV teaching, “real” integration is “personal social integration and valued social participation” (PSI & VSP). It has been defined as “valued participation by a (devalued) person in a culturally normative quantity of contacts, interactions, relationships, and roles with ordinary and valued citizens, in valued (or at least normative) activities, and in valued (or at least ordinary) physical and social settings.” For short, we sometimes call PSI and VSP “real integration.”
Note that there could be valued participation in valued settings and valued activities, but that the elements of
societal participation could be lacking. For instance, a wealthy recluse who engages in valued activities could do so with only a very restricted number of other valued people, and in very valued but self-segregated settings.
The key difference between our formulation of real integration and the currently popular inclusion ideology is this: we see
valued participation as something than can only occur on a voluntary basis. After all, one cannot force people to value others, their presence, or their participation. In contrast, inclusion is based on a rights (primarily legal rights) notion that prefers valued presence, but will enforce an involuntary devalued presence and participation if voluntary valued participation is not forthcoming, or not forthcoming all at once. However, some people would also apply the term “inclusion” to participation of devalued persons with non-devalued ones in devalued activities in open society, in either valued or devalued settings, as long as these are not “segregated” ones. (pp. 58-59)

1.2 NIRJE’S SIXFOLD CONCEPTUALIZATION OF INTEGRATION: PHYSICAL, FUNCTIONAL, SOCIAL, PERSONAL, SOCIETAL, AND ORGANIZATIONAL

16In 1980, Nirje added a new appendix, “On Integration,” to his famous paper on Normalization. Therein, he defined integration as having six facets (Nirje, 1980, pp. 47-49). Three of Nirje’s facets (i.e., physical, functional, and organizational integration) appear to correspond approximately to certain aspects of Wolfensberger’s physical integration, and three (social, personal, and societal integration) to aspects of Wolfensberger’s social integration. Also, Nirje leaves relatively implicit what is explicit (and indeed central) for Wolfensberger, namely, that social interactions and relationships, to be genuinely socially integrative of devalued persons, must involve nondevalued, ordinary citizens.

The following multiple definition of integration and its consequent facets or levels can be distinguished:

1. Physical integration enables a handicapped person to share the basic security needs that are drawn from physical settings and to experience the normal rhythms of the day, the week, the year, and of the life cycle. Physical integration means that homes should be located in residential areas, that classes be offered in regular school buildings, that work be available in industrial and business areas, and that leisure be found in ordinary leisure time environments, as much as possible.
2.
Functional integration is an expansion of physical integration. A person, even if physically handicapped, should be able to function in and have access to necessary and ordinary segments of the environment, such as dining halls, restaurants, swimming pools, rest rooms, and transportation.
3.
Social integration is the interpersonal or impersonal social relationships in neighborhoods, in schools, in work situations, and in the community at large. Manners, attitudes, respect, and esteem are mutually involved here. This interface is also affected by public attitudes of the media and by the public image of handicapped persons.
4.
Personal integration is related to the developing and changing needs for personal interaction with significant persons. It includes the opportunities to have a satisfactory private life with meaningful relationships, for example, for the child: parents, siblings, relatives, and friends; and for the adult: relatives, friends, marriage partner, and children....
5.
Societal integration relates to the expressive functioning as a citizen regarding legal rights and the opportunities for growth, maturity, and self-attainment through respected expressions of self-determination. Thus, individual program and planning decisions should, as much as possible, belong to the handicapped person in the routine dealings with his own conditions of life, options, and future. Also, the same recognition given to any other social body should be given to handicapped people regarding their opportunities to express themselves as a group....
6.
Organizational integration. Those organizational forms and administrative structures that assist and support the furthering of the above facets of integration of handicapped people are consequently more appropriate than other, more restrictive, forms and structures. In general, this is achieved by utilization of public generic agencies as much as possible. In situations where required specialization of services cannot be developed within regular services or when equivalent services cannot be developed within regular services or when equivalent services simply do not exist in the generic services area, the special services developed should be patterned after and aligned with general services as much as possible.

17Nirje’s distinctions among different forms of integration have had an impact on policy and research. In Quebec, for example, the Ministry of Health and Social Services (Groupe de travail, 1987, 1988) distinguished among physical, functional, and social integration in its policy directives. Also, Pedlar (1990) referred to Nirje’s conceptualization in noting that the physical and functional integration of people with mental retardation in Sweden appeared to be much more extensive than their social integration.

1.3 STOREY’S FOURFOLD CONCEPTUALIZATION OF INTEGRATION, AS COMPOSED OF PHYSICAL INTEGRATION, SOCIAL INTEGRATION, RELATIONSHIPS (SOCIAL SUPPORT), AND SOCIAL NETWORKS

18Storey’s (1989) paper is one of the few that has attempted to synthesize writings on integration. According to Storey, integration—although a critical outcome for people with disabilities—has been an elusive term. Citing Mank and Buckley (1989), Storey stated that four different components of integration have often been considered: physical integration, social integration, relationships, and social networks. Each has been defined (albeit skeletally) as follows (with Wolfensberger’s influence apparent in the definition of the first two elements):

Physical integration: “The necessary first step for other forms of integration... Without physical integration, there cannot be social integration, relationships, and social networks. But mere physical presence may not necessarily lead to other forms of integration” (Storey, 1989, p. 281).
Social integration: “Regular access to interactions with individuals without identified handicaps and regular use of normal community resources” (Will, 1984, p. 2; cited in Storey, 1989, p. 281). Thus, interactions are a necessary condition of social integration.
Relationships: “Social relationships are often defined in connection to social support and may be analyzed in terms of quantity, structure, and function” (House & Kahn, 1985; cited in Storey, 1989, p. 283). “Relationships depend on social interactions that are ongoing and usually involve reciprocal participation in activities” (Mank & Buckley, 1989, p. 320; cited in Storey, 1989, p. 283).
Social networks: “Social networks... generally refer to the people identified as socially important to a person” (Storey, 1989, p. 283).

19Concerning the operational definition of integration, Storey listed a number of measures that have been used in the literature for each of the four components, both on the molecular level of discrete behaviors and on the molar level of global ratings. In the case of social integration, molecular measures have included social skills and discrete measures of social interaction. Storey noted that such measures can be criticized because there is little evidence that the behaviors assessed are related to successful lifestyle changes. He also asserted that little is currently known about relationships among measures of the four integration components.

20Storey’s summary schema usefully introduces the mainstream social science concepts of social networks and social support into the assessment and study of integration. Although absent (at least in their usual social-science meanings) from Wolfensberger’s and Nirje’s conceptualizations of integration, these two concepts provide essential tools for studying the structure of socially integrative relationships, the psychological functions that they fulfill for the individual, and the antecedents and consequences of integration. Thus, as we note in the third part of the present chapter, mainstream social science constructs such as these hold considerable potential for enriching Normalization and SRV theory and research. Fortunately, the two research groups whose work we examine next—Sara Burchard and her colleagues at the University of Vermont, and Stephen Newton and Robert Horner and their colleagues at the University of Oregon—have established numerous illuminating conceptual, empirical, practice, and policy links between social networks and social support, on the one hand, and physical integration and social integration, on the other.

1.4 INTEGRATION IN THE RESIDENTIAL SERVICES RESEARCH OF SARA BURCHARD AND HER COLLEAGUES AT THE UNIVERSITY OF VERMONT

21Over the last 15 years, Sara Burchard and her colleagues have carried out one of the most systematic programs of research related to Normalization and integration of which we are aware. (For a synthesis of their work, see Burchard’s contribution [chapter 11] to the present volume.) Her group has examined the extent to which Normalization and integration principles—the basis of Vermont social policy in developmental disabilities during this period—have actually been implemented in community residential services for adults with mental retardation. Directly inspired by Wolfensberger’s (1972) conceptualization of Normalization and integration, Burchard and her colleagues have investigated the antecedents and consequences of key issues related to the quality and effectiveness of community residential services for persons with mental retardation: staff and managers’ Normalization-related and other competencies; residents’ degree of lifestyle Normalization and physical and social integration; the size and composition of residents’ social networks; and residents’ degree of stress, social support, community adjustment, satisfaction with their living situation, and personal well-being. At the risk of some overlap with her chapter, we shall focus here on findings from the work of Burchard and her colleagues that are directly pertinent to the topic of integration.

1.4.1 RESEARCH ON COMMUNITY INTEGRATION

22Burchard, Pine, Gordon, Joffe, Widrick, and Goy (1987) examined the relationship between the competencies of residence managers and the community integration and satisfaction of 78 adults with mental retardation who were living in 14 community residences. Thus, early in their research program, Burchard et al. (1987) used the more global term community integration, rather than the more specific terms of physical integration and social integration that they came to use later. Community integration was defined, conceptually, as the integration of clients into community activities, and operationally, as the number of individualized and integrating activities in which clients had participated during the last two weeks (see Burchard, Gordon, & Pine, 1990). Burchard et al. (1987) found that managers’ competencies in Normalization were significantly, positively, and strongly related to residents’ level of community integration (r =.60, p <.05). Subsequently, Burchard, Gordon, and Pine (1990) studied the relationship between the competence in Normalization principles of 12 group home managers and the level of community integration (defined as before) and satisfaction with their living situation of 57 adults with mental retardation residing in these homes. Burchard et al. (1990) found that the greater the manager’s Normalization-related competence, the more integrated (r =.64, p <.025) and satisfied (r =.51, p <.001) were the residents. Also, the more integrated the residents, the more satisfied they were with their living situation (r =.64, p <.001).

23As noted by Burchard in chapter 11 of the present volume, both her own and her group’s data on residential staff and managers’ competencies made it very clear that such competencies—especially an awareness of and responsiveness to resident needs, and an awareness of value-based Normalization issues—had an important positive impact on program quality. Specifically, these staff and manager competencies were associated with service goals more consistent with Normalization (the policy basis of Vermont’s community services), with more frequent engagement by residents in individualized and integrated activities, and with greater satisfaction by residents with their living situation.

1.4.2 RESEARCH ON PHYSICAL AND SOCIAL INTEGRATION

24In a new, 3-year longitudinal study, Burchard, Hasazi, Gordon, and Yoe (1991) followed 133 adults who had a borderline, mild, or moderate degree of mental retardation. Fifty-four were residents of group homes, 38 lived in supportive apartments, and 41 resided with their natural families. In this study, Burchard et al. (1991) replaced the global construct of community integration with the more precise concepts of physical integration and social integration. This decision was no doubt directly influenced by Wolfensberger’s distinction between these two terms (Wolfensberger, 1972; Wolfensberger & Thomas, 1983). Burchard et al. (1991) operationally defined physical integration as the mean number of resident activities per week (over the last 2 weeks and as reported by staff members) that had taken place in the community or in other nonsegregated environments (i.e., outside of work or day-program settings). Social integration, on the other hand, was operationally defined as the mean number of these weekly activities that had occurred in the company of a nondisabled peer or companion.

25Burchard et al. (1991) found that residents’ level of mental retardation was significantly and inversely correlated (r=-.30) with their degree of social integration and that physical integration was much more common than social integration, in each type of residential setting. In the supportive apartments, the means for physical and social integration were, respectively, 12.4 versus 3.1 activities per week; in the group homes, 7.3 versus 0.9; in the natural families, 6.9 versus 1.2; and, for the sample as a whole, 8.76 versus 1.95. In light of these data, Burchard et al. (1991) concluded that a much higher level of physical integration than of social integration had been attained, in spite of residents’ daily access to nonsegregated community settings. (This finding—a virtual constant in the community services literature, in various service fields and countries—is echoed in several chapters in the present volume. It is also highly supportive of the utility of Wolfensberger’s [1972, 1998b; Wolfensberger & Glenn, 1975; Wolfensberger & Thomas, 1983] and others’ [Burchard et al., 1991; Burchard, Rosen, Gordon, Hasazi, Yoe, & Dietzel, 1992; Gordon, Burchard, Hasazi, Yoe, Dietzel, & Simoneau, 1992; Newton, Olson, & Horner, 1995; Newton, Ard, Horner, & Toews, 1996; Storey, 1989] explicit conceptual and operational distinction between physical and social integration.)

1.4.3 RESEARCH ON SOCIAL INTEGRATION, IN THE BROADER CONTEXT OF RESIDENTS’ SOCIAL NETWORKS, SOCIAL SUPPORT, SATISFACTION WITH THEIR LIVING SITUATION, AND PERSONAL WELL-BEING

26In another study drawn from their 3-year longitudinal research, Burchard et al. (1992) measured residents’ social networks by means of an adaptation of Weinberg’s (1984) Social System Self-Assessment (SSSA). Administered in the form of an interview with each resident, the SSS A produced five scores: (a) social network size (i.e., the number of individuals named as persons providing support); (b) multiplexity (i.e., the resident’s relationship to the persons named, such as relative, staff member, friend, service worker, or employer); (c) balance between stress and support (i.e., the proportion of network members perceived by the resident as a source of positive support rather than of stress); (d) satisfaction with contacts (i.e., the proportion of network members with whom the frequency of contact was perceived by the resident as sufficient); and (e) reciprocity (i.e., the number of relationships characterized by mutual initiation of contact and social support).

27For the 133 residents as a group, the social network of the “typical” resident included a mean of 9.4 individuals (as calculated from Table 10.2 in Burchard et al., 1992, p. 143), of whom 2.0 were relatives, 2.6 residence staff members, 4.4 peers (3.6 with disabilities, 0.89 without disabilities), and 0.4 advocates or staff in generic or vocational services. On average, only 0.8 of the residents’ relationships with these persons were reciprocal. Concerning residents’ desired frequency of social contacts with members of their network (as calculated from Table 10.3 in Burchard et al., 1992, p. 145), 62% of the residents wanted more contact with relatives, 59% wanted more with nondisabled peers, 53% wanted more with staff members, and 47% wanted more with peers who had disabilities. For the sample as a whole, only the proportion of the entire network or of the peer network that was perceived as a source of positive support had a significant, positive correlation with residents’ satisfaction with their living situation and feeling of personal well-being. This suggests that residents’ experience of social interactions and social integration (i.e., of the supportiveness or not of the persons with whom they have social interactions and relationships) is likely to be crucial for their satisfaction with their living situation and personal well-being. Burchard and her colleagues have illuminated this neglected topic—the subjective side of social interactions and social integration—very directly and clearly.

28Rosen and Burchard (1990) compared the social networks and community activities of 27 adults with mild mental retardation (all were living in supportive apartments and drawn from the larger sample of 133 residents) and 27 adults without disabilities in Vermont. The members of the two groups were matched for marital status (all were single), sex, age, and size of community of residence. Rosen and Burchard found no significant differences between the groups with regard to their total number of community activities, activity settings (with family or relatives, in the community, or in an isolated place), activity objectives (functional, social, or solitary leisure), or the people interacted with (no one [alone], friends, family, or staff). Nor did the groups differ in terms of their perceived network support or satisfaction with the frequency of their social contacts. On the other hand, the groups were very different with respect to the characteristics of their friends: 90% of the friends of the persons with mental retardation were themselves mentally retarded; the nondisabled adults had social networks that were twice as large as those of the adults with mental retardation, with a greater proportion of friends (79% versus 48%); and the reciprocal relationships of the nondisabled adults were seven times more frequent than those of the adults with mental retardation. Also, 100% of the nondisabled adults named a nondisabled peer as the most important source of social support, compared to only 4% of the persons with mental retardation. In short, in spite of the successful physical integration observed among the 27 residents of supportive apartments, social integration was extremely limited.

29Hasazi, Burchard, Gordon, Vecchione, and Rosen (1992) assessed, in the same sample of 133 adults with mental retardation, the influence of stress and objective and subjective social support on adjustment to community life. The measure of objective social support, based on interviews with individual residents, included four elements: the total number of individuals in the resident’s social network, the number of peers with disabilities, the number of peers without disabilities, and the number of relatives. Subjective social support (i.e., residents’ satisfaction with support) was operationally defined as the proportion composed of individuals in the resident’s social network who were perceived as sources of support. Hasazi et al. (1992) found that the residents who were the most socially integrated and satisfied with their social support were also most satisfied with their living situation. Furthermore, those whose social network included a greater number of nondisabled persons or relatives suffered less stress.

30Gordon et al. (1992) studied the 114 individuals among the total sample of 133 (86%) who had remained in the same type of residence throughout the 3 years of the project. Controlling statistically for differences among the residents of the three different types of residential settings, Gordon et al. found that residents in supportive apartments showed the greatest degree of independence, lifestyle Normalization, and physical and social integration. Compared with the apartment residents, the group home residents had social networks that were smaller and contained a larger number of peers with disabilities. The group home residents were also less satisfied with their personal relationships with staff and coresidents and with their degree of independence. Those living with their natural families had a less normalized lifestyle than residents in the other two types of settings and participated less in independent activities in the community than those who lived in apartments. Overall, Gordon et al. found, over the 3 years of the study, that the residents in each type of setting were highly stable in terms of their physical and social integration, lifestyle, adjustment, and satisfaction. Moreover, Gordon et al. concluded that persons with mental retardation must be afforded greater opportunities for the exercise of control, choice, and independence and must also be helped to achieve a higher level of social integration.

1.4.4 CONCLUSION CONCERNING THE RESEARCH OF BURCHARD AND HER COLLEAGUES

31Among the major strengths of the work by Burchard and her colleagues are its broad and up-to-date theoretical framework and its focus on current social policy concerns. Refreshingly, these researchers have shed new light on central Normalization and social integration issues by drawing upon several mainstream social science perspectives, including social network, social support, stress, and ecological theory. In producing strong empirical support for the usefulness of Normalization and integration principles in the structuring of community services, Burchard and her colleagues have also shown the way to more theoretically grounded and fruitful Normalization and SRV-related research. Their work also has many points of contact with that of the research group at the University of Oregon, whose research we look at next.

1.5 INTEGRATION IN THE SOCIAL-LIFE RESEARCH OF STEPHEN NEWTON, ROBERT HORNER, AND THEIR COLLEAGUES AT THE SPECIALIZED TRAINING PROGRAM, UNIVERSITY OF OREGON

1.5.1 CONCEPTUAL FRAMEWORK CENTERED ON UNDERSTANDING AND IMPROVING THE SOCIAL LIVES OF PERSONS WITH MENTAL RETARDATION

32In a foundational paper, Newton, Horner, Ard, LeBaron, and Sappington (1994) described the conceptual model underlying their research. They noted that services have undergone a shift from an emphasis on health, safety, and skill development to a stress on the provision of “lifestyle support.” As a result, there has been increased recognition of the importance of improving the social relationships of persons with disabilities, including their engagement in preferred daily activities and their realization of valued lifestyle outcomes, such as physical and social integration. Concomitantly, a shift in focus has also occurred, from the individual with a disability to his or her relationship with other community members.

33Like Burchard and her colleagues, Newton and Horner and their colleagues employ a number of central social science concepts—social support, social interaction, social networks, and social relationship stability—that are highly relevant to the study of integration issues. Social support, first of all, “consists of verbal and/or nonverbal information or advice, tangible aid, or action that is proffered by social intimates or inferred by their presence and has beneficial emotional or behavioral effects on the recipient” (Gottlieb, 1983, p. 28; cited in Newton et al., 1994, p. 393). Social support has six functions through which it produces a generally beneficial impact on physical and mental health: material aid, behavioral assistance, intimate interaction, guidance, feedback, and positive social interaction (Barrera & Ainsley, 1983). Measures such as the 23 social support scales reviewed by Heitzmann and Kaplan (1988) can be used to measure social support, including the specific supportive behaviors received by a respondent, the functional properties of the support, or the respondent’s perception of available social support or satisfaction with available support. According to Newton et al. (1994), the limited research that exists on social support among persons with mental retardation suggests that many rely on paid caregivers or other persons with disabilities as sources of support. (They also cite, however, Edgerton’s [1988] long-term follow-up in 1985 of a group of persons with mental retardation who had left Pacific State Hospital in California many years earlier to live on their own. Interestingly, Edgerton’s follow-up indicated that people’s reliance on benefactors declined markedly over time, that most had personal relationships in which they received and gave assistance, and that four acted actually as benefactors for persons without mental retardation.)

34Social interaction occurs when “two or more people jointly engage in an activity of daily life: making a purchase, having a conversation, eating dinner, playing basketball, celebrating a birthday, and so on” (Newton et al., 1994, p. 396). Measures of social interaction may assess the frequency, duration, type, or function of the interactions engaged in. According to Newton, Olson, and Horner (1995), social interaction, social contact, and social integration have often been used in the literature as synonyms, to refer to the engagement of an individual with mental retardation in an activity (e.g., attending a concert or going grocery shopping) with a nonimpaired community member. Research on community living programs indicates that such social integration (i.e., social contact between people with mental retardation and persons other than human service personnel or other program participants) is infrequent.

35A social network “is simply a set of actors—individuals or other social entities—and their relationships with each other” (Koehly & Shivy, 1998, p. 3). Social network analysis is a methodology that uses indices of relatedness among individuals to produce representations of social structures and positions inherent in dyads or groups. The network indices may include the number of persons who provide the target individual with the type of relationship under study (networksize); the social roles occupied by network members (composition); how often interactions take place between a target individual and other network members (frequency); the cohesiveness of a group of individuals (density); the ties between two particular members (reciprocity); the cohesiveness of a subgroup of members (cliquing); the degree to which a particular individual initiates interactions or relationships (actor centrality); the extent to which other network members initiate interactions with a given individual (actor prestige); and the degree to which certain individuals remain separate from network interactions (isolates). Software packages capable of assessing such indices and carrying our social network analyses include UCINET IV (Borgatti, Everett, & Freeman, 1992) and STRUCTURE (Burt, 1991). In mental retardation, social network analysis has concentrated mainly on network size, composition, and reciprocity. Individuals living in community settings have been found to have larger support networks than those living with their families. Also, individuals without disabilities have been found to have networks that are larger and marked by considerably greater reciprocity than those of persons with mental retardation (Newton et al., 1994).

36Social relationship stability is “the stability, or maintenance, of social relationships” (Newton et al., 1994, p. 398). Despite the obvious importance of the topic, particularly for persons with mental retardation whose lives, in many cases, have been marked by a high degree of relationship discontinuity, there has been little research on the topic. In one of the few such studies, Newton, Olson, and Horner (1995) studied the social relationships between 11 adults who had mild to profound mental retardation and 14 unimpaired community members (i.e., who were neither family members, persons paid to provide services to the individual with mental retardation, or persons with mental retardation, and who had participated in one more activities with one or two of the persons with mental retardation at least once every three months during the last year). On average, the community members had known the individual with mental retardation for 6.5 years (range = 1-23 years), and had taken part in an activity with this person more than once a month during the preceding 12 months. Ten of the 14 community members were currently employed in the field of mental retardation (but did not work with the person with mental retardation in question), and two had previously worked in the field. In terms of the social support functions provided, the community members indicated that they usually provided emotional support to the person with mental retardation, often provided feedback, access to other people, information, and material aid, and “sometimes” provided help in making major life decisions. The community members felt that they were engaged in relatively reciprocal relationships with “friends” and even “best friends,” receiving about as much emotional support as they gave and only a little less of the other types of support than they gave (Newton, Olson, & Horner, 1995).

1.5.2 PHYSICAL AND SOCIAL INTEGRATION AS VALUED OUTCOMES

37Newton, Ard, Horner, and Toews (1996) conceptualized physical and social integration as valued outcomes that are indicators of the quality of life (QOL) of people with mental retardation. Efforts to enhance QOL occur within the context of Oregon’s Residential Outcomes System (formerly known as the Valued Outcomes Information System) and are evaluated in terms of two broad kinds of indicators: satisfaction on the part of the person with mental retardation with his or her residential services, and the “valued outcomes” that he or she experiences. The valued outcomes that are tracked on a continuous basis are the following:

38Physical integration refers to participation in community activities (as measured by the number of community activities experienced each week).

39Social integration refers to being of the community, and not merely in the community, and is defined as occurring when a person with mental retardation participates in an activity with someone who is not paid to provide him or her with support (as measured by the number of activities experienced each week with people other than residential program staff or other program participants). (As Newton et al. [1996] note, this definition of social integration is not meant to denigrate the valuable relationships that people with mental retardation have with staff. Rather, it is meant to ensure that relationships with staff members do not become substitutes for relationships with other community members.) Functional independence refers to the number of activities a person engages in on his or her own each week, without staff support.

40Relative independence refers to the person’s increasing independence on task analysis steps associated with instructional activities specified on his or her Individualized Support Plan.

41Frequency of activities refers to the pace of a person’s life (i.e., number of “valued activities” experienced each week), tailored to personal preferences.

42Variety of activities refers to the diversity of a person’s life (i.e., the number of different activities experienced each week), as a reflection of the person’s current and emerging interests.

43Activity preference refers to activities that reflect a person’s unique lifestyle preferences (number of preferred activities experienced each week).

44As of June 1993, in more than 85% of Oregon’s 313 twenty-four-hour residential programs, direct service staff had been trained in the use of the Residential Outcomes System and were using it with fidelity (Newton et al., 1996). Research indicates that the physical and social integration of people with mental retardation and the size of their social networks increased following implementation of the Residential Outcomes System (Newton & Horner, 1993, 1995; Newton et al., 1996).

1.5.3 EFFORTS TO INCREASE SOCIAL RELATIONSHIPS AND SOCIAL INTEGRATION

45Newton, Horner, and their colleagues, at the Specialized Training Program at the University of Oregon, have not been content merely to observe and measure the social relationships and social integration of persons with mental retardation. They have also been proactive in trying to increase both. Their work has the considerable merit of showing how research can help to improve the lives of persons with disabilities.

46In an initial paper in this vein, Kennedy, Horner, and Newton (1989) studied the patterns of social contact experienced by 23 adults with severe disabilities living in community settings in the state of Washington. The participants, who were aged 21 to 58 (M = 34 years) and had been assessed as severely disabled by mental health professionals, had a variety of intellectual and physical impairments. The researchers measured the participants’ social contacts over a 30-month period. The average participant was found to engage in social contacts with 64 different people during the 30-month period, not counting people with whom they lived or people who were paid to provide support to them. During a typical 4-week period, participants engaged in 15 interactions with people other than those they lived with or who were paid to provide support. Thirty-two percent of the interactions were with family members, 13% with best friends, and 55% with friends and acquaintances.

47Kennedy, Horner, and Newton (1990) next investigated the links between the social networks and activity patterns of 20 other persons classified as severely disabled. The latter were between 22 and 56 years of age (M = 39 years) and lived in community apartments or small homes. The average participant’s social network was found to be composed of 15 persons, of whom 4 (29%) were family members, 6 (40%) were paid to provide support, 3 (20%) were coresidents or coworkers, and 2 (12%) were friends or neighbors. Participants engaged in an average of 456 activities per month, at home (89%) or in the community (11%). The larger the participant’s social network, the more frequent were his or her monthly activities. The strongest positive correlations were found between the number of family members in the participant’s social network and the frequency and variety of his or her activities.

48Newton and Horner (1993) then turned to a more active study that attempted to improve the social relationships of three women with severe disabilities. The investigators evaluated an intervention consisting of a “social guide,” that is, a staff person responsible for coordinating the implementation of “community network strategies” that were intended to increase the social networks and social integration of the three participants. These strategies included the following: altering the women’s activity patterns, to increase the frequency of selected preferred activities, which, in turn, would lead to greater social integration; matching the women’s activity interests (e.g., in fishing) with the activity interests (e.g., in fishing) of friends or neighbors; and teaching the women to engage in social-reciprocation activities, such as inviting a friend to dinner or sending a thank-you note. Newton and Horner found that the intervention was accompanied by increases in participants’ social networks, rate of activities, and social integration. These gains were maintained at a 12-week follow-up.

49Ouellette, Horner, and Newton (1994) further assessed the viability of altering activity patterns as a strategy for improving social networks and social integration. The participants were five adults with moderate to severe intellectual disabilities. They were between 20 and 39 years of age and lived with one or two live-in support staff and a maximum of two other persons with disabilities. Each participant and his or her support staff chose five preferred activities. The intervention, which lasted 6 months, attempted to increase the frequency of participants’ target activities and thereby increase their social networks and social integration. In general, Ouellette et al. found that the intervention was associated with an increase in the variety of participants’ community activities that involved social integration, with the primary change being the development of new friendships.

1.5.4 CONCLUSION ON THE RESEARCH PROGRAM OF NEWTON, HORNER, AND THEIR COLLEAGUES

50The work of the Oregon group is very promising in its focus on testing practical ways of improving the social life of people with mental retardation. Their research has shown that activity patterns and social networks can indeed grow, thereby mediating increases in social integration. Overall, their work suggests that more emphasis be placed on the relationship between people’s activities and other aspects of their social lives, as well as on their preferred modes of social participation. Also, like the research program of Burchard and her colleagues at the University of Vermont, that of Newton et al. (1994) demonstrates clearly that physical and social integration issues are very fruitfully approached from mainstream perspectives such as social network and social support theory.

1.6 RESEARCH ON INTEGRATION AS EMBEDDED WITHIN THE BROADER CONSTRUCT OF “COMMUNITY ADJUSTMENT”

51In contrast to the work of Burchard, Newton and their colleagues, which was informed by a clear conceptualization of integration (stemming from Wolfensberger’s [1972] distinction between physical and social integration), the studies in the present section do not seem to have been rooted in a clear conceptual definition of integration. This may be because integration was viewed as a component of a broader construct, community adjustment, which itself has been notoriously difficult to define with precision. In the absence of a clear conceptual definition of integration, the research in the present section strikes one as largely measurement-driven. Although employing sophisticated latent-variable factor-analytic techniques, these studies seem less helpful in understanding integration than those reviewed in the two preceding sections.

52McGrew, Bruininks, Thurlow, and Lewis (1992) wished to establish improved measures of the construct, community adjustment and integration. With data from a sample of 239 young adults with mild, moderate, or severe mental retardation, McGrew, Bruininks, Thurlow, et al. (1992) used latent-variable factor analysis to identify four empirical integration dimensions: integration into a social network (as indexed by the number and variety of friends, with or without disabilities, staff members, etc.); integration into recreational and leisure activities (e.g., social or solitary, formal or informal, community or domestic activities); integration into economic and community activities (e.g., amount of monthly benefits, payment of income tax, possession of a bank account, amount of monthly salary, type of economic activity during the day, type of residence); and support service requirements (e.g., number of factors limiting social activities, number of support services received, etc.).

53In the same sample of 239 young adults, McGrew, Bruininks, and Thurlow (1992) investigated the relationship between the four adjustment and community integration factors just mentioned and adaptive/maladaptive behavior (assessed with the Inventory for Client and Agency Planning; Bruininks, Hill, Weatherman, & Woodcock, 1986). Statistically significant canonical correlations were found between adaptive/maladaptive behavior and, respectively, integration into economic and community activities (rc =.74), requirement for support services (rc =.47), integration into social networks (rc =.38), and integration into recreational and leisure activities (rc =.30). Adaptive/maladaptive behavior thus appeared to be related to community adjustment and integration, especially to the two factors that entail independence within the community (i.e., integration into economic and community activities, and support service requirements). However, in the absence of a clear conceptual definition of community adjustment and integration, one wonders to what extent the items used to measure integration were conceptually and empirically distinct from those used to measure adaptive/maladaptive behavior.

54Anderson, Lakin, Hill, and Chen (1992) studied social integration in a national sample of 370 older persons with mental retardation who were 63 years of age or over. Again, without providing a clear conceptual definition of social integration or clearly distinguishing it from physical integration, Anderson et al. measured the concept in terms of four major factors: integration into the home (as indexed by participation in household tasks); integration into recreational and leisure activities (in six different categories); integration into social relationships (with neighbors, friends, nondisabled persons, and family members); and use of community resources (supermarkets, stores, libraries, churches, banks, seniors’ centers, public transportation). (The latter dimension would appear to be tapping physical rather than social aspects of integration.) A total social integration score was obtained by summing the scores for the four subscales (the intercorrelations of which ranged from 0.38 to 0.63).

55Anderson et al. (1992) found that the personal variable most strongly related to social integration was the level of mental retardation, with persons with a lower level of disability better integrated on each of the four indicators. Overall, the degree of social integration of the elderly research participants was very low, in part because 52% were living in public residential institutions. Only 45% had met a neighbor, and a mere 14% had visited a neighbor’s home. The residential settings of 28% were so isolated that interaction with neighbors was virtually impossible. Fifty-three percent never visited friends or had no friends; when they did have friends, the latter usually lived in the same residential setting. Only 31% of the participants had regular social contact with nondisabled persons other than staff, and 51% had no contact with their families (half, in fact, had no family). The participants’ use of community resources and participation in household tasks was also low. Participants in the study who lived in community settings (i.e., family-care or group homes) were physically and socially better integrated than those living in public or private institutions, even though 40% of those living in the community had no close friends and only 50% had regular contact with nondisabled persons other than staff.

56Halpern, Nave, Close, and Nelson (1986) used confirmatory factor analysis procedures to validate a conceptual model of community adjustment and integration that consisted of four dimensions: occupation (operationalized in terms of three indicators: employment; disposable monthly income after housing cost; and integration with nondisabled persons, which was seen as occurring mainly in the workplace); residential setting (three indicators: residence comfort and cleanliness; quality of residential neighborhood; and access to community services and resources); social support and security (three indicators: social network and frequency of leisure activities; security with respect to minor abuse; and security with respect to major abuse); and satisfaction (three indicators: overall satisfaction with the three preceding dimensions; self-satisfaction or self-esteem; and satisfaction with residential program). Halpern et al. (1986) found that data from a sample of 257 mentally impaired adults were consistent with the conceptual model. They added that, in future, the integration of disabled persons with nondisabled persons may be expected to transcend the occupational realm and to encompass the three other aspects of community adjustment.

57Using the foregoing model as a conceptual framework, Halpern (1989) reviewed some 30 studies conducted on the community adjustment of young disabled adults. He found that although occupational adjustment tended to be low, residential adjustment was more encouraging. Also, although in Halpern’s opinion social interactions and social networks (made up largely of other young disabled persons) were rather weak, the level of personal satisfaction and self-esteem among the young disabled adults was relatively high.

58This suggests that the links between social networks, social integration, and psychological well-being need careful investigation, along the lines indicated by the work of Burchard and her colleagues and that of Newton, Horner, and their research group.

1.7 SCHALOCK’S RESEARCH ON INTEGRATION (“SOCIAL INCLUSION”) AS EMBEDDED WITHIN QUALITY OF LIFE

59Schalock (1996, 1997) recently defined quality of life (QOL) as an overarching principle applicable to the betterment of both society and the lives of people with disabilities. In Schalock’s approach, QOL is composed of eight core dimensions: emotional wellbeing, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights. Within the domain of social inclusion (the term that Schalock now uses as a broad synonym for integration), QOL enhancement techniques include working with natural social support networks, promoting positive roles and lifestyles, stressing normalized and integrated environments, providing opportunities for community integration, and supporting volunteerism (Schalock, 1997). (For another discussion of QOL, see Heal’s contribution to the present volume [chapter 9]. Heal sees QOL as more fundamental than and an alternative to Normalization and SRV.)

60Schalock, Keith, Hoffman, and Karan (1989) originally proposed a 28-item Quality of Life Index that assesses three major dimensions: control of the environment, involvement in community activities, and social relations. Subsequently, Schalock and Keith (1993) developed a 40-item Quality of Life Questionnaire that assesses both objective and subjective indicators of satisfaction, competence/productivity, empowerment/independence, and community integration/social belonging. In a sample of 715 persons with mental retardation, Schalock, Lemanowicz, Conroy, and Feinstein (1994) found that of 18 independent variables, five (which had beta coefficients of 0.10 or more in absolute size) were the most important predictors of the person’s QOL Index score: adaptive behavior, challenging behavior, weekly earnings, home type (congregate versus community care), and the frequency of integrated activities, including social visits and community activities. Campo, Sharpton, Thompson, and Sexton (1997) found that QOL Index scores of persons with severe or profound mental retardation were positively related to their having a large number of socially supportive human service staff, family, and friends in their social networks, a high degree of individualization in their home environment, and high levels of participation in home and community-integrated activities.

61These research results appear broadly consistent with Schalock’s conceptualization of integration as a domain within QOL, although it is not clear to what extent the “integrated activities” or “community activities” in question represent physical rather than social integration (as previously defined), or both. Also, these results appear to suffer from predictor-criterion overlap: Schalock et al. (1994) explicitly noted that such overlap was present in their study, and, from the description by Campo et al. (1997) of the variables in their study, one suspects that it was also present in their research.

1.8 INTEGRATION IN THE RESEARCH OF CAMIL BOUCHARD AND MARC DUMONT AT THE LABORATOIRE DE RECHERCHE EN ÉCOLOGIE HUMAINE ET SOCIALE (LAREHS), UNIVERSITÉ DU QUÉBEC À MONTREAL

62In line with its longstanding commitment to Normalization, SRV, and integration, the province of Quebec funded a large-scale longitudinal study of social integration and quality of life among persons with mental retardation who were living in the community. A report summarizing the findings from this ambitious investigation was recently published (Bouchard & Dumont, 1996). The sample included approximately 500 adults residing in a range of publicly funded community residential options and 125 adults, 120 adolescents, and 64 children living with their natural families. Bouchard and Dumont thus conducted what is doubtless one of the largest studies of its type ever conducted in the French-speaking world. Besides analyzing the living situation of a sizable and roughly representative sample of persons with mental retardation in Quebec, the investigation also produced a number of instruments of good psychometric quality that will no doubt prove useful for other French-language researchers.

1.8.1 DEFINITION OF SOCIAL INTEGRA TION

63Operating from within an ecological and interactional perspective, Bouchard and Dumont (1996) defined one of their key terms and dependent variables, social integration, as follows:

an observable and measurable state (or style) of an individual, resulting from the (more or less) autonomous exercise of (more or less) freely chosen activities that allow him or her to interact with other persons (impaired or not) in the community, in more or less specialized contexts in which nonimpaired and impaired persons may be found. (Bouchard & Dumont, 1996, p. 4; translated from the French by Robert Flynn)

64This definition of social integration has the merit of being careful and explicit. It should be noted, however, that it is very different from the definitions reviewed earlier that explicitly limit the term social integration to activities and interactions between persons with impairments, such as mental retardation, and ordinary citizens (cf. Burchard et al., 1991, 1992; Gordon et al., 1992; Newton et al., 1995, 1996; Storey, 1989; Wolfensberger, 1972, 1998b; Wolfensberger & Glenn, 1975; Wolfensberger & Thomas, 1983).

65Given their definition, it is not surprising that Bouchard and Dumont (p. 4) assert that it is possible to imagine a “socially integrated” person whose network of friends might be quite large but whose repetitive social activities would take place mainly in an institution, or a second “socially integrated” person who might carry out a wide variety of social activities but usually alone and in natural settings. For Bouchard and Dumont (1996, p. 4), these two persons would simply be exhibiting different styles of “social integration.” On the other hand, the other authors just cited who make a clear distinction between physical and social integration, would no doubt refer to the first individual as largely “physically segregated” and, if his or her activities and social interactions also took place mainly with other institutional residents, as quite “socially segregated” as well. They would doubtless also consider the second individual to be mainly physically integrated but—depending on the frequency of his or her interactions with ordinary citizens—as tending to be either socially integrated or not.

66In interpreting Bouchard and Dumont’s (1996) findings, therefore, many of which are interesting and useful, it is imperative to keep in mind that by social integration, they mean essentially “engagement in freely chosen social activities and in the social interaction that may accompany such activities.” In theory, their definition of social integration thus subsumes both social interactions between impaired human service clients and ordinary citizens (i.e., what some other writers have seen as the heart of social integration) and the physical presence of an impaired human service client in ordinary settings, without interactive contact with ordinary citizens (i.e., what other writers have considered to be physical integration). In practice, however, given that social interactions between impaired clients and ordinary citizens (except when the latter are family members) are empirically rare (as demonstrated by the research of Bouchard and Dumont, 1996; Burchard et al., 1991; etc.), Bouchard and Dumont’s “social integration” basically reduces, empirically, to what the other authors cited have defined as “physical integration.”

1.8.2 ANTECEDENTS AND CONSEQUENCES OF SOCIAL INTEGRATION

67With respect to social integration as they defined it, Bouchard and Dumont (1996) found the following:

  1. There were several distinct styles or profiles of integration, two exhibited by persons who are less autonomous and two by those who are more autonomous. Thus, people with mental retardation were not simply more or less integrated; they were also integrated in different ways. These integration styles were associated with a number of factors: people’s degree of autonomy, their appearance, the presence of behavioral problems, the size and number of residential options, the quality of the neighborhood, the support offered by service administrators to direct-service workers, the efforts made to integrate people, and the years of experience of frontline workers.

  2. The level of integration (as measured mainly in terms of weekly activities) was directly related to the person’s basic activities, to efforts made by directservice workers and parents, and, to a more modest degree, to the quality of the neighborhood where the person with mental retardation lives.

  3. People’s level of social integration was not directly linked to their level of psychological wellbeing. Thus, social integration should be pursued in and for itself, as a right of citizenship, rather than as a necessary and sufficient condition of people’s psychological well-being.

  4. There was a very strong relationship between the person’s level of social integration (as measured largely by his or her weekly activities) and his or her level of adaptive-behavior skills. In fact, the predictive coefficient at both Time 1 and Time 2 was 0.93 (i.e., close to unity). (As we noted in relation to somewhat similar findings produced by McGrew, Bruininks, Thurlow, et al., 1992, however, one must ask to what extent the measurement of adaptive behavior and of engagement in weekly activities was truly independent. In principle, it would seem to be very difficult to assess adaptive behavior skills—which must be inferred from what a person typically does—in a way that is truly independent of his or her actual level of competence in carrying out weekly activities.)

  5. Service workers’ and parents’ efforts to promote integration were directly related to the level of integration observed.

  6. The person’s level of adaptive-behavior skills was also the best predictor of his or her level of psychological well-being, with a predictive coefficient of 0.49 at both Time 1 and Time 2. (The same question about predictor-criterion independence can also be posed here.)

  7. The existence of behavior problems was a strong negative influence on adults’ integration and a source of frustration for service personnel and parents.

  8. The person’s level of adaptive skills was strongly related to the type of residence to which he or she was assigned and thus to the integration programs associated with the different types of setting.

  9. The presence of an experienced service worker in the life of a person with mental retardation was positively related to the latter’s psychological wellbeing.

  10. The social networks of persons with mental retardation were very small, ranging from an average of 4 members for adults to 7 members for adolescents. Service workers and fellow residents made up a large proportion of these networks, especially for people living in large residential settings, and family members constituted a large part of the networks of people living with their families.

  11. Romantic relationships were almost nonexistent.

  12. The larger the residential setting, the fewer the number of integration activities and the more numerous the activities taking place within the residence.

  13. Service workers’ integration efforts were positively related to the friendliness of neighbors’ attitudes toward the residents.

68Overall, the research by Bouchard and Dumont adds a great deal of descriptive and explanatory detail to our knowledge of the community living situation of adults, adolescents, and children with mental retardation. It thus contains many helpful insights for parents, administrators, and direct service personnel.

1.9 INTEGRATION WITHIN BIJELL AND MINNES’S ADAPTED ACCULTURATION PERSPECTIVE ON DEINSTITUTIONALIZATION

69The last conceptualization that we shall review in this section was developed by Buell and Minnes (1994) of Queen’s University (Kingston, Ontario). Buell and Minnes begin with an acculturation framework that, as used in crosscultural psychology (Berry, 1984), defines four basic ways in which smaller groups can interact within a larger, dominant culture. These four options result from answers to two key issues, namely, whether it is considered valuable for the smaller cultural group to maintain (1) its distinctive cultural identity and characteristics, and (2) its relationships with other groups. The first option, integration, results from an affirmative answer to both issues (i.e., the smaller group wishes to maintain both its cultural identity and characteristics and positive relations with the dominant culture). The second option, assimilation, is the result when the smaller group does not wish to maintain its distinctive cultural identity and characteristics but does want to have positive relations with the larger culture. The third option, segregation or separation, is the result when the smaller group wishes to maintain its cultural identity and characteristics but does not have positive relations with the larger culture, either because it has the power to separate itself from the dominant culture or, lacking such power, is segregated from (and presumably by) the larger culture. The fourth option, marginalization, is the result when the smaller group does not wish to maintain its distinctive identity and characteristics and does not have positive relations with the dominant culture.

70In adapting this acculturation framework to developmental disabilities and specifically to deinstitutionalization and service-delivery efforts, Buell and Minnes (1994) define persons with developmental disabilities as the smaller cultural group. For them, the two key issues then become (1) Is it considered to be of value to recognize and support the unique characteristics of persons with developmental disabilities? and (2) Is it considered to be of value for persons with developmental disabilities to maintain relationships with other groups, including the wider society? In Buell and Minnes’s adapted acculturation framework, the first option, integration, results from a service-delivery emphasis on supporting developmentally disabled persons’ distinctive characteristics and on maintaining their relationships with other groups and the larger community. The second option, assimilation, results from a de-emphasis on developmentally disabled persons’ distinctive characteristics while supporting their relations with the wider culture. The third option, segregation, results from an emphasis on supporting developmentally disabled persons’ unique characteristics while preventing their ties with the wider society. The fourth option, marginalization, results from a de-emphasis on both developmentally disabled persons’ unique characteristics and their relations with the broader culture.

71According to Buell and Minnes (1994), the goal of Normalization (the term they use to refer to both Normalization and SRV) is assimilation, not integration:

Here [i.e., for Normalization] the aim of service delivery is to develop “behaviours and characteristics as culturally normative as possible” [Wolfensberger, 1972, p. 28] ultimately indistinguishable from the general public, that is, a service delivery that transforms people from visible to invisible [Rhoades & Browning, 1982]. The adapted acculturation framework shows that service delivery based on Normalization principles is a resolution to Issue ONE that de-emphasizes the unique characteristics of persons with developmental disabilities. The answer is no to “whether the unique characteristics of persons with developmental disabilities are recognized and supported.” This is explicitly stated in the definition of Normalization...
Service delivery based on Normalization would define a successful outcome as assimilation. (pp. 99-100)

72In a review of deinstitutionalization outcome studies undertaken since 1972 (the year in which Wolfensberger’s book on Normalization appeared), Buell and Minnes (1994) found that only 46% of the studies provided enough descriptive information to be coded as belonging to one of their four outcome categories. According to their Table 3 (p. 102), 26% of the studies were coded as exhibiting a segregation outcome, 17% an integration outcome, 2% an assimilation outcome, and 0% a marginalization outcome. Buell and Minnes interpreted their findings as contradicting Normalization because, empirically, integration and segregation were much more frequent outcomes of deinstitutionalization than assimilation.

73We have included Buell and Minnes’s (1994) conceptualization of integration because of its direct relevance to the primary objective of the present chapter, which is not the place for a detailed critique of their interpretation of Normalization/SRV or of their adapted acculturation framework. It must be pointed out, however, that Buell and Minnes’s article suffers from a number of weaknesses and misconceptions, including the following:

  1. Buell and Minnes do not take adequate account of the basic Normalization/SRV literature, including Wolfensberger’s (1980) lengthy consideration of Normalization-related disagreements and misunderstandings, PASS (Wolfensberger & Glenn, 1975), and PASSING (Wolfensberger & Thomas, 1983). The Normalization/SRV literature argues that Normalization can be partial as well as full (Wolfensberger, 1980) and that, contrary to what Buell and Minnes (1994) assert, Normalization/SRV not only permits but often positively requires specialized supports to meet the needs of particular individuals (Wolfensberger, 1972, 1980; Wolfensberger & Glenn, 1975; Wolfensberger & Thomas, 1983). Earlier in the present chapter (pp. 266-267), for example, the need for supports was stated explicitly, in the third paragraph of the citation from Wolfensberger’s (1998a) SRV monograph. This passage is consistent with his earlier writings on the topic.

  2. Contrary to Buell and Minnes’s argument, Normalization/SRV is concerned with individuals and individual outcomes, and not only with service delivery and service-delivery outcomes (Wolfensberger, 1980).

  3. Normalization/SRV would almost certainly recognize as acceptable outcomes both integration and assimilation (even defined in the narrow service-delivery oriented and deinstitutionalization-related way preferred by Buell and Minnes), depending on the needs and characteristics of the people concerned. Thus, their interpretation of Normalization/SRV is inaccurate when they assert, in the citation given earlier (Buell & Minnes, 1994, p. 99), that the Normalization-derived “answer is no to ‘whether the unique characteristics of persons with developmental disabilities are recognized and supported.’ This is explicitly stated in the definition of Normalization.”

  4. The fact that Buell and Minnes’s review of the deinstitutionalization literature found that segregation was a relatively frequent outcome would not surprise most people, least of all proponents of Normalization. This finding merely establishes that deinstitutionalization has often produced disappointing results, and can by no means be laid at the feet of Normalization/SRV. Wolfensberger (1980, p. 96) pointed out many years ago that “it is a constant struggle to secure even the most modest compliance with any of its [Normalization’s] implications.”

2 CONCEPTUALIZATION AND MEASUREMENT OF INTEGRATION IN THE LITERATURE ON PSYCHIATRIC DISABILITY

2.1 INTEGRATION WITHIN THE FIELD OF PSYCHIATRIC DISABILITIES

74Deinstitutionalization and the development of community services supporting persons with psychiatric disabilities in the community has formed the cornerstone of mental health policy in many Western countries over the past 3 decades (Mechanic & Rochefort, 1990). As a result, a massive relocation of persons with psychiatric disabilities has taken place from institutions to community settings. A central objective of deinstitutionalization and associated community services has been the reintegration into the community of persons with persistent mental health problems (Segal & Aviram, 1978).

75A review of the research literature on persons with psychiatric disabilities living in the community reveals a relatively small number of studies of integration into the community. Segal and Aviram (1978) conducted the first and most influential such study on this issue, investigating the “social integration” of persons with psychiatric disabilities who were living in sheltered-care facilities in California. Most subsequent studies on community integration of this population have relied heavily on Segal and Aviram’s original definition of what they termed “external” social integration. Consequently, we have limited ourselves here to investigations that used their original definition or variations of it. Moreover, rather than attempting an exhaustive review, we have selected those published studies that we consider the most important investigations on the integration of persons with psychiatric disabilities. After examining conceptual and operational definitions of social integration, we present empirical findings on levels of integration attained by persons with psychiatric disabilities and key variables correlating with integration. We conclude with a discussion of the implications of the literature reviewed for practice and future research.

2.1.1 CONCEPTUAL AND OPERATIONAL DEFINITIONS OF SOCIAL INTEGRATION

76Segal and Aviram’s (1978) conceptual definition has been the one most widely used to describe the integration of persons with psychiatric disabilities in the community. According to them, five levels of involvement make up social integration: presence, access, participation, production, and consumption. Presence refers to the amount of time spent in the community. Access consists of the degree to which places, services, and social contacts are available to an individual. Participation is defined as the extent of involvement in activities with other people. Production refers to whether or not an individual participates in income-producing employment. Finally, consumption refers to the extent to which an individual manages his or her personal finances and purchases goods and services. Each level of involvement is seen as constituting a separate and sufficient condition that reflects integration into the community. A person’s overall level of social integration is defined as the sum of his or her five levels of involvement.

77Based on the location of involvement, Segal and Aviram (1978) distinguished between internal and external integration. Internal integration was defined as involvement occurring within sheltered-care facilities. The facility was considered the focus, and involvement was defined in relation to individuals, resources, or activities available within the facility. In contrast, external integration referred to involvement outside the facility, that is, in the community and shared with the general population. For purposes of the present chapter, we shall limit our attention to external integration, because only the latter is consistent with definitions of social integration in other areas of disability. As such, it subsumes access and use of community resources, as well as participation in activities with other members of the community.

78Based on this conceptualization, Segal and Aviram (1978) developed a measure of external integration. Factor analyses of the responses of 393 residents of sheltered-care facilities for persons with psychiatric disabilities produced seven external-integration subscales: attending to oneself (e.g., involvement and time outside of the facility); access to community resources (e.g., library, community center, place of worship); access to basic or personal resources (e.g., meals, clothing, health care); access and participation with family members; access and participation with friends; social interaction through community groups (e.g., volunteer activities, social groups); and use of community facilities (e.g., visit to a park, attendance at an entertainment event). Scores on these subscales were summed to produce an overall external integration score.

79Several subsequent studies developed briefer measures of “community” integration by selecting items from Segal and Aviram’s (1978) external-integration scale that reflected behavioral involvement in leisure and work-related activities in the community (see, for example, Kruzich, 1985, or Nelson, Hall, Squire, and Walsh-Bowers, 1992).

2.1.2 EXTENT OF (EXTERNAL) SOCIAL INTEGRATION

80Segal and Aviram’s (1978) study provides the best estimate of the level of external social integration experienced by persons with psychiatric disabilities living in community sheltered-care facilities. In general, the picture that emerges from their research is one of varying degrees of social integration within this population, of whom the majority, however, describe themselves as having relatively low levels of involvement in the community. Specifically, Segal and Aviram identified a continuum of integration consisting of five levels, from low to high.

81The first (least integrated) group was made up of individuals who had no independent access to community resources (e.g., stores or public transportation) or basic resources (e.g., laundry facilities or meals) and no contact with any community residents outside the facility. It was estimated that 12% of the sheltered-care population operated at this level. At the second level, individuals were able to access community resources and other basic resources; however, they had only minimal contact with family or friends, had no interaction with other community members, and never participated in activities or used recreational facilities in the community. The largest group of individuals (40%) from the postpsychiatric sheltered-care population were at this level. A group of similar size (38%) comprised the third level of the continuum. Besides being able to access resources in the community, they also reported having some contact with family and friends outside their facility. However, members of this group rarely used community facilities or interacted with other community members. Relatively few individuals (9%) were at the fourth level, which included those who sometimes used community facilities and interacted with community members. Finally, a very small group of individuals (1%) was at the highest level of integration, reporting easy access to resources in the community, frequent participation in community activities, and numerous contacts with family, friends, and other community residents.

82It is difficult to determine the generalizability of Segal and Aviram’s (1978) survey results to persons with psychiatric disabilities in other locales and the extent to which their findings may have changed over the past 20 years. A follow-up of Segal and Aviram’s sample 10 years after the original survey showed a small decrease (5%) in participants’ overall level of social integration, even after the researchers had corrected their data for the contribution that an increase in age had made to the reduction (Segal & Kotler, 1993).

83In more recent research conducted in Ottawa, Ontario, Aubry and Myner (1996) compared the community integration of persons with psychiatric disabilities with that of their nondisabled neighbors. For their study, Aubry and Myner used a broadened definition of community integration that included physical presence in the community, corresponding to Segal and Aviram’s (1978) definition of external integration, in addition to psychological and social aspects contributing to community integration. The researchers defined physical presence in the community as physical integration. Psychological aspects of community integration, referred to as psychological integration, involved the extent to which individuals perceived themselves as being similar to neighbors and felt part of the neighborhood. Social aspects of community integration, called social integration in the study, entailed the degree of social contact with neighbors.

84A comparison of a group of 51 persons with psychiatric disabilities with a group of 51 nondisabled matched according to sex and location (i.e., living within one square block) on the different types of community integration found differences between the two groups emerging only in the area of social integration (Aubry & Myner, 1996). In particular, persons with psychiatric disabilities were found to have much less social contact with their neighbors.

85An item-by-item examination of differences on the social integration measure showed differences emerging especially in relation to closer forms of contact (e.g., going on a social outing, being invited into a person’s home) requiring spending more time with neighbors, with persons with psychiatric disabilities rarely engaging in these kinds of contacts (Aubry & Myner, 1996). The researchers concluded that their findings suggested that persons with psychiatric disabilities were achieving some community integration, at least in being present in and feeling part of the community, when compared to their neighbors. However, Aubry and Myner noted that they were lagging in the most important type of integration, namely having regular social interaction with nondisabled persons living in physical proximity.

86Overall, research on the extent of external social integration suggests that the majority of persons with psychiatric disabilities have achieved only limited integration in the community and remain for the most part socially isolated from nondisabled persons. It is important to note that the majority of studies examining integration of this population have focused on those individuals with psychiatric disabilities who live in congregate housing programs. Recent service initiatives in North America have focused on supporting persons with psychiatric disabilities to live independently in regular housing with the assumption that it will facilitate greater integration (Carling, 1990; Ridgway & Zipple, 1990). No research to date has examined whether placing persons in these living contexts will indeed produce integration comparable to that of nondisabled community residents.

2.2 CORRELATES OF (EXTERNAL) SOCIAL INTEGRATION

87Researchers have identified three types of correlates of the integration of persons with psychiatric disabilities in the community, namely, community, facility, and individual characteristics, representing different levels of analysis. Therefore, our review of findings on correlates will be organized according to these clusters of characteristics.

2.2.1 COMMUNITY CHARACTERISTICS

88Studies examining community characteristics have focused on the population makeup of the geographical area in which an individual lives, the location of his or her residence in relation to community resources, and the response of community residents. Trute and Segal (1976) investigated census-tract characteristics that predicted external social integration among samples of persons with psychiatric disabilities living in sheltered-care facilities in California and Saskatchewan. Census-tract characteristics predictive of greater social integration among urban residents included a greater proportion of seniors (i.e., over 65 years old) and youth (i.e., between 15 and 24 years old), a greater proportion of households of six or more persons, a larger proportion of rented occupied dwellings, and a lower proportion of low-income families (i.e., less than $15,000) and middle-aged persons (i.e., 35 to 54 years old). Census-tract predictors of greater social integration in rural areas included a higher proportion of rented dwellings and nonfamily members in households, a higher proportion of youth under 15, a lower proportion of individuals aged 15 to 24, and a lower proportion of married individuals.

89Based on their findings, Trute and Segal (1976) identified geographic areas that facilitated higher external social integration for persons with psychiatric disabilities. In particular, they concluded that “supportive” communities were those that had moderate social organization, having neither high social cohesion nor severe social disorganization. Suburban areas with a high proportion of single family dwellings are typically socially cohesive, while communities with severe social disorganization are those with high levels of crime, delinquency, drug consumption, and suicide (e.g., inner-city ghettos and slum areas). Recent research suggests that a majority of persons with psychiatric disabilities live in less desirable, high-crime neighborhoods that would be characterized as socially disorganized (Newman, 1994).

90Using Trute and Segal’s (1976) California sample of sheltered-care residents, Segal, Baumohl, and Moyles (1980) developed a typology of neighborhoods to identify urban areas that are facilitative of sheltered-care residents’ external social integration. Factor analyses of census-tract data related to the location of sheltered-care facilities produced five dimensions: degree of political conservatism based on voting patterns, family orientation (i.e., high rate of family and owner-occupied homes), socioeconomic status, crime rates, and degree of nontraditional political activity (i.e., based on political affiliation and voting patterns in referendums). The neighborhoods found to be most conducive of the social integration of persons with psychiatric disabilities were liberal and nontraditional in political orientation and of mixed-income composition. Neighborhoods with conservative, working-class populations also appeared to facilitate social integration. In contrast, neighborhoods with conservative, middle-class populations appeared to impede social integration.

91Segal et al. (1980) also examined neighborhood “restrictiveness” (i.e., the receptivity or lack thereof of community residents, as perceived by facility operators and sheltered-care residents). The results of these analyses were used to explain the different levels of social integration associated with different types of neighborhoods. In particular, an extreme negative reaction by community members appeared to present a significant barrier to sheltered-care residents’ achieving social integration. In both liberal mixed-income and conservative working-class neighborhoods, on the other hand, a moderate amount of negative reaction by community residents was typically present and appeared to stimulate social integration by constructively pressuring facilities to provide good services.

92The importance of neighbors’ reactions was further highlighted in Segal and Aviram’s (1978) findings. Of all the predictors at different levels examined in their study, a positive response of neighbors (i.e., being invited into neighbors’ homes, having ongoing meaningful contact with neighbors) was found to be the most important in determining social integration. Conversely, the frequency of complaints to operators of sheltered-care facilities was negatively related to social integration. Similarly, Aubry and Myner (1996) found that more social interaction with neighbors by nondisabled residents in a neighborhood was associated with greater social contact with neighbors by persons with psychiatric disabilities living in the same neighborhood.

93Other community characteristics reported by Segal and Aviram (1978) as impeding the external social integration of persons with psychiatric disabilities living in sheltered-care facilities included greater facility distance from community resources and rural facility location. Facilities that were more distant from community resources (e.g., parks, libraries, medical services, vocational rehabilitation) frequently developed their own programs and services, which encouraged the isolation of their residents from the rest of the community. The lower degree of social integration achieved by persons in rural facilities was explained in terms of a lesser degree of openness in rural communities toward facility residents. Also, rural facilities tended to house older individuals who were more chronically disabled than those residing in urban facilities.

94Kruzich (1985) extended these findings on facility location by examining social integration among persons with psychiatric disabilities living in different-sized cities. She found individuals in cities of 10,000 to 100,000 inhabitants to be the most integrated, followed by those in small towns and rural areas (i.e., population less than 10,000). Individuals in cities over 100,000 proved to be the least integrated. These findings were interpreted as showing that midsized cities (10,000 to 100,000) had the right amount and kind of community resources to facilitate community participation, whereas in large cities greater distances to community resources and safety concerns impeded social integration.

95In sum, the findings on the relationship between community characteristics and external social integration highlight the importance of ecological factors. Variables such as city size; neighborhood population mix; community residents’ response to facilities, their occupants, and their neighbors; and distance to community resources appear to be important determinants of the social integration of persons with psychiatric disabilities. In fact, both Segal and Aviram (1978) and Kruzich (1985) found community characteristics to be more important predictors of social integration than facility or individual characteristics. Unfortunately, housing programs for persons with psychiatric disabilities have often been located in communities and neighborhoods with characteristics that are more likely to impede social integration (Goldstein, Brown, & Goodrich, 1989; Newman, 1994).

2.2.2 FACILITY CHARACTERISTICS

96Segal and Aviram (1978) identified two facility variables as significant predictors of external social integration: the extent to which a facility has an ideal psychiatric environment and the degree to which facility residents are isolated from the community. Based on Moos’s (1972) conceptualization of the social climate of community-oriented programs, an “ideal psychiatric environment” referred to a setting with high levels of resident involvement, staff and resident support, and spontaneity and autonomy, and which communicated clear expectations of residents, provided training opportunities in practical skills, and encouraged the expression of anger and open discussion of problems. Not surprisingly, more ideal psychiatric environments were found to produce greater external social integration of residents.

97The other facility characteristic found by Segal and Aviram to be predictive of external social integration was the extent that facilities promoted contacts with family and neighbors. Overall, however, Segal and Aviram (1978) found facility characteristics to be less important predictors of integration than community or individual characteristics.

98Kruzich (1985) found three facility characteristics to be predictive of external social integration, after controlling for age, psychosocial functioning, and involvement with others outside the residence: depersonalizing staff practices, availability of social skills training in facilities, and type of facility. Specifically, facilities with staff who recognized residents’ individuality (e.g., by ensuring that residents had personal possessions or by celebrating their birthdays) and had more social-skills training tended to produce higher levels of social integration. In addition, residents living in congregate-care facilities reported higher levels of external social integration than those in intermediate-care or nursing facilities.

99Nelson et al. (1992) compared the external social integration of persons living in different types of housing programs. Their results showed that individuals living in group homes or supported apartments (i.e., independent living with support tailored to needs) experienced greater external social integration than individuals living in board-and-care homes. Individuals in group homes and supported apartments also received more support from friends and professionals and reported more independent functioning than those living in board-and-care homes. Nelson and his colleagues suggested that their findings support the development of more supportive residential options for persons with psychiatric disabilities living in the community.

100Given the wide variety of housing programs that have been developed (Trainor, Morrell-Bellai, Ballantyne, & Boydell, 1993), the contribution of facility characteristics to social integration of its residents is an important issue that has received surprisingly little research attention. Housing programs have been one of the major vehicles for integrating deinstitutionalized psychiatric patients into the community. Further research is needed on the program factors and residence characteristics that facilitate or impede integration in order to help improve existing housing programs and develop new housing models.

2.2.3 INDIVIDUAL CHARACTERISTICS

101A number of individual characteristics have been found to be associated with external social integration. In particular, greater external social integration is related to a lower level of psychopathology; a higher level of psychosocial ability; possession of more spending money; being a voluntary resident in a housing facility; having greater control over one’s finances; being of younger age; being more involved with others outside the facility, including neighbors; and exchanging more support with social-network members (Aubry & Myner, 1996; Kruzich, 1985; Nelson et al., 1992; Segal & Aviram, 1978).

102Segal and Aviram (1978) identified having sufficient spending money, having control over one’s finances, and being a voluntary resident as individual characteristics that a residential setting could alter in order to improve residents’ external social integration. These findings suggest that residents in settings that promote autonomy tend to be more socially integrated in the community.

103Nelson et al. (1992) investigated the relationship of different social-network transactions to different areas of community adaptation, including the community integration of persons with psychiatric disabilities. They found that receiving unsupportive transactions related to emotional and social issues from social network members and providing supportive transactions to network members were positively related to external social integration. These findings were interpreted as reflecting the fact that involvement in community activities exposes persons with psychiatric disabilities to both positive and negative aspects of social contact with others.

104As previously mentioned, Segal and Kotler (1993) performed a 10-year follow-up of persons living in sheltered care facilities in California who had participated in Segal and Aviram’s (1978) original study. On average, the participants showed a small decrease in external social integration over the 10-year period. The specific aspects of social integration showing the greatest decline included access to and participation with family (-31%), access to basic and personal resources (-30%), and taking care of one’s own purchasing needs (-26%). The researchers concluded that the length of residency in sheltered-care facilities contributed to increased dependence inside the facility and decreased integration outside the facility.

105Finally, Aubry and Myner (1996) found that greater physical presence in the community (i.e., consonant with Segal and Aviram’s external social integration) for persons with psychiatric disabilities was related to having more contact with neighbors but not to their psychological integration (i.e., feeling part of the neighborhood) nor to their subjective quality of life (i.e., global life satisfaction). Not surprisingly, they also reported that greater contact with neighbors for persons with psychiatric disabilities was related to them having a higher level of psychological integration.

2.3 SUMMARY ON THE INTEGRATION OF PERSONS WITH PSYCHIATRIC DISABILITIES IN THE COMMUNITY

106A number of conclusions can be drawn from our review of the literature on the external social integration of persons with psychiatric disabilities in the community. It would appear that after 30 years of deinstitutionalization, the integration of persons with psychiatric disabilities into the community remains an elusive goal. On the one hand, persons with psychiatric disabilities are present in the community to the extent of accessing and using resources on their own. On the other hand, only a small proportion appear to have regular interactions with family, friends, or other community residents.

107Research suggests that environmental factors, in the form of community characteristics and facility characteristics, play an important role in facilitating or impeding integration. The importance of where persons with psychiatric disabilities live has probably been underestimated. The location of housing programs for this population often appears to have been based mainly on finding neighborhoods whose residents will not oppose having them in close proximity (Goldstein et al., 1989). Also, despite the empirical evidence of the importance of ecological factors, minimal attention appears to have been placed on designing residential programs that will promote community integration.

108It is noteworthy that most of the research examining the integration of persons with psychiatric disabilities has been conducted on residents of specialized congregate-housing programs. In the wake of deinstitutionalization, such programs have served as the main mechanism for facilitating the community integration of persons with psychiatric disabilities in Canada and the United States (Cutler, 1986; Trainor et al., 1993). At the same time, opportunities for living in specialized housing programs are only available to a small percentage of persons with psychiatric disabilities in North America (Randolph, Ridgway, & Carling, 1991; Trainor et al., 1993).

109Homelessness, single-room occupancy hotels, overnight shelters, and nursing homes make up the most prevalent living situations for this group (Mechanic & Rochefort, 1990). Although it has not been investigated empirically, the assumption is highly tenable that individuals in these settings experience much less integration into the community than those living in housing programs.

110Strong criticisms have recently emerged of specialized congregate housing that purports to integrate persons with psychiatric disabilities (Carling, 1990,1992; Ridgway & Zipple, 1990). Specifically, it has been argued that this housing approach may actually serve as a barrier to the assumption of normal roles in the community by segregating and stigmatizing persons with psychiatric disabilities (Ridgway & Zipple, 1990).

111An alternative approach, involving independent living in normal housing with necessary supports, is currently being proposed. Much of the current focus in psychiatric rehabilitation in North America is related to developing effective community supports that will enable this kind of independent living (Blanch, Carling, & Ridgway, 1988).

112A limitation of the definition of external social integration developed by Segal and Aviram (1978) and adopted by other researchers is that it defines integration in a relatively passive fashion, such that the term is limited to accessing and using resources and participating in activities in the community, with, at best, minimal involvement with nondisabled community members being seen as necessary (Sherman, Frenkel, & Newman, 1986). This early conceptualization of integration may reflect the original objectives of deinstitutionalization, which focused more on physically locating individuals in the community than on helping them build strong social relationships with other members of the community.

113As in the case of the integration of people with other disabilities, a call for more active and equitable community participation in the areas of housing, work, and social interaction is being made by persons with psychiatric disabilities, their family members, and many support-providers working with them (Carling, 1990). In line with this evolution, some researchers have recently broadened the definition of social integration to include social network transactions (Parks & Pilisuk, 1984; Nelson et al., 1992) and social interactions with friends, neighbors, and relatives (Aubry & Myner, 1996; Sherman et al., 1986; Trute, 1986). Future research in this area would do well to follow their lead, using an expanded conceptualization of integration that includes active involvement with nondisabled community residents.

3 CONCLUSION

114The foregoing review of the literature in developmental and psychiatric disability makes it clear that the concept of integration, which for the last quarter-century has been a key objective of service programs, government legislation, and social policy, has also begun to have an impact on and benefit from the scrutiny of empirical research. Indeed, a new emphasis on variables such as integration, lifestyle Normalization, social support, and personal satisfaction has begun to replace the often vague and conceptually barren construct of “adjustment to the community” that dominated much earlier research (Gordon et al., 1992). However, in order that research on integration realize its considerable potential, we believe that a number of steps need to be taken.

115First, clear conceptual and operational definitions of integration are essential. The most insightful and informative research in the literature reviewed was based on such definitions. Moreover, of the various conceptualizations of integration reviewed, we see Wolfensberger’s “personal social integration and valued social participation” as ultimately the richest and most useful. It will be recalled that Wolfensberger (1998b, p. 59) defined “real” integration as “valued participation by a (devalued) person in a culturally normative quantity of contacts, interactions, relationships, and roles with ordinary and valued citizens, in valued (or at least normative) activities, and in valued (or at least ordinary) physical and social settings.” Even though research and common experience suggest that “real” integration, so defined, is relatively rare, the concept affords a high and worthy target at which service supports, practices, and policies may productively aim.

116Second, other forms of integration (which are likely to be variants of physical integration) are also worth investigating, whether we refer to them as community presence, community integration, or participation in community activities. What is important is that such phenomena be clearly distinguished from personal social integration and valued social participation. In the same vein, we think it essential that physical integration and social integration continue to be clearly differentiated from one another, as research in a number of countries has consistently shown that the attainment of physical integration is typically much more satisfactory than the achievement of social integration.

117Third, future theorizing and empirical research on integration should be more directly informed by and embedded in well-established social science theoretical frameworks, such as social network, social support, social role, or stress-coping theory. In making such links, researchers could profitably follow the lead of Lemay in his work on social roles (chapter 10 in this volume); Burchard and her colleagues’ research on Normalization in residential services (summarized in chapter 11 in this volume); Newton and his colleagues’ investigation of the social lives of persons with mental retardation; Bouchard and Dumont’s research on community living among adults, adolescents, and children with mental retardation; and Nelson and his colleagues’ research on the social networks and exchange of social support among persons with psychiatric disabilities. The conduct of the kind of research on integration that we have in mind would require a detailed knowledge of both Normalization and SRV as well as of mainstream social science sources, such as Cohen and Wills (1985), Hobfoll and Vaux (1993), and Veiel and Baumann (1992), to cite but a few examples.

118Fourth, there is an urgent need for a multidimensional, psychometrically sound measure of integration on the individual level. The foregoing review indicates that no such measure currently exists.

119Bouchard and Dumont’s (1996) measures are based on a conceptualization of social integration that we believe (as we noted earlier) is too closely akin to “physical integration” or simply “social-activity-based social interactions” to fill the gap, and PASS (Wolfensberger & Glenn, 1975) and PASSING (Wolfensberger & Thomas, 1983) are pitched primarily at the program rather than the individual level. Wolfensberger’s (1998b) conceptual definition of “real” integration, as “personal social integration and valued social participation,” would be an appropriate starting point for the construction of such a measure.

120Fifth, there is a need to further identify the individual and environmental antecedents of integration. Burchard and her colleagues and Bouchard and Dumont showed, for example, that the level of impairment and the level of adaptive behavior, respectively, influence the extent and style of integration. Similarly, the literature in both developmental and psychiatric disability indicated that different residential environments were associated with different levels of integration. Burchard et al. (1992), for example, observed that in supportive apartments (i.e., in the type of residential setting promoting the highest level of personal responsibility, independence, and control over one’s own life), the highest levels of independent behavior, lifestyle Normalization, physical integration, and job insertion were to be found. They also found that apartment residents, like those who live with their natural families, were more socially integrated and more satisfied with their residential situation than those living in group homes.

121Sixth, the research of Burchard and her colleagues, Halpern and his colleagues, and Bouchard and Dumont suggests that integration and psychological well-being may, under many conditions, be relatively independent phenomena. To the extent that integration constitutes an objective aspect and psychological well-being a subjective aspect of QOL, this finding of relative independence is not surprising. In fact, it is consistent with the weak relationship often found in the empirical literature between objective and subjective indicators of QOL. Embedding future integration research within a social network and social support framework, as we suggested earlier, would doubtless clarify the specific conditions under which integration and psychological well-being may be expected to be relatively independent or, on the contrary, related.

122Finally, in light of the very limited amount of interaction reported in the literature between people with developmental or psychiatric disabilities and the general public (other than members of the people’s families), more applied research along the lines of that of Newton, Horner, and their colleagues would certainly be desirable. The Oregon group appears to be virtually unique in its emphasis on devising and evaluating practical ways of improving the social relationships of people with mental retardation, including their relationships with ordinary citizens. Encouragingly, the Oregon research has shown that increases in activity patterns, social networks, and preferred modes of social participation are related to increases in social relationships and integration. Their work, like that of Burchard and her colleagues, of Bouchard and Dumont, and of Nelson and his colleagues, illustrates the promise of social network, social role, and social support theory as fundamental perspectives from which to approach integration issues and, more broadly, many Normalization and SRV questions.

Literaturverzeichnis

REFERENCES

Anderson, D. J., Lakin, K. C., Hill, B. K., & Chen, T. H. (1992). Social integration of older persons with mental retardation in residential facilities. American Journal on Mental Retardation, 96, 488-501.

Aubry, T., & Myner, J. (1996). Community integration and quality of life: A comparison of persons with psychiatric disabilities in housing programs and community residents who are neighbors. Canadian Journal of Community Mental Health, 15, 5-20.

Barrera, M., Jr., & Ainsley, S. L. (1983). The structure of social support: A conceptual and empirical analysis. Journal of Community Psychology, 11, 133-143.

Berry, J. W. (1984). Cultural relations in plural society: Alternatives to segregation and their sociopsychological implications. In N. Miller & M. B. Brewer (Eds.), Groups in contact: The psychology of desegregation (pp. 11-27). San Francisco: Academic.

Blanch, A. K., Carling, P. J., & Ridgway, P. (1988). Normal housing with specialized supports: A psychiatric rehabilitation approach to living in the community. Rehabilitation Psychology, 33, 47-55.

Bolduc, M. (1989). Lignes directrices d’une recherche évaluative portant sur la qualité de vie et l’intégration sociale des personnes présentant une déficience intellectuelle. Québec, QC: Ministère de la Santé et des Services sociaux, Direction de l’évaluation, Service de l’évaluation, réadaptation et services de longue durée.

Borgatti, S. P., Everett, M. G., & Freeman, L. C. (1992). UCINET IV (Version 1.64) [Computer software]. Columbia, SC: Analytic Technologies.

Bouchard, C., & Dumont, M. (1996). Où est Phil, comment se porte-t-il et pourquoi? Une étude sur l’intégration sociale et le bien-être des personnes présentant une déficience intellectuelle. Québec, QC: Gouvernement du Québec, Ministère de la Santé et des Services sociaux, Direction générale de la planification et de l’évaluation.

Bruininks, R., Hill, B., Weatherman, R., & Woodcock, R. (1986). Inventory for client and agency planning. Allen, TX: DLM Teaching Resources.

Buell, M. K., & Minnes, P. M. (1994). An acculturation perspective on deinstitutionalization and service delivery. Journal on Developmental Disabilities, 3, 94-107.

Burchard, S. N., Gordon, L. R., & Pine, J. (1990). Manager competence, program Normalization and client satisfaction in group homes. Education and Training in Mental Retardation, 25, 277-285.

Burchard, S. N., Hasazi, J. S., Gordon, L. R., & Yoe, J. (1991). An examination of lifestyle and adjustment in three community residential alternatives. Research in Developmental Disabilities, 12, 127-142.

Burchard, S. N„ Pine, J., Gordon, L. R., Joffe, J. M., Widrick, G. C., & Goy, E. (1987). The relationship of manager competence to program quality in small community residences. In J. A. Mulick & R. F. Antonak (Eds.), Issues in therapeutic intervention. Transitions in mental retardation (Vol. 2). Norwood, NJ: Ablex.

Burchard, S. N„ Rosen, J. W., Gordon, L. R., Hasazi, J. S„ Yoe, J., & Dietzel, L. C. (1992). A comparison of social support and satisfaction among adults with mental retardation living in three types of community residential alternatives. In J. W. Jacobson, S. N. Burchard, & P. J. Carling (Eds.), Community living for people with developmental and psychiatric disabilities (pp. 137-154). Baltimore: John Hopkins University Press.

Burt, R. S. (1991). Structure (Version 4.2) [Computer Software]. New York: Columbia University, Center for the Social Sciences.

Campo, S. F., Sharpton, W. R., Thompson, B., & Sexton, D. (1997). Correlates of the quality of life of adults with severe or profound mental retardation. Mental Retardation, 35, 329-337.

Carling, P. (1990). Major mental illness, housing, and supports: The promise of community integration. American Psychologist, 45,969-975.

Carling, P. (1992). Homes or group homes: Future approaches to housing, support and integration for people with psychiatric disabilities. Adult Residential Care Journal, 6, 87-96.

Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98, 310-357.

Cutler, D. L. (1986). Community residential options for the chronically mentally ill. Community Mental Health Journal, 22,361-373.

Dansereau, J., Duteau, C., Ely, P., & Flynn, R J. (1990). Evaluation des programmes résidentiels en santé mentale de l’Outaouais. Hull, QC: Conseil régional de la Santé et des Services sociaux de l’Outaouais.

Davidson, P. W., & Adams, E. (1989). Indicators of impact of services on persons with developmental disabilities: Issues concerning data-collection mandates in P. L. 100-146. Mental Retardation, 27, 297-304.

Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987. Pub. L. No. 100-147, §101, Stat. 840 (1987).

Edgerton, R. B. (1988). Aging in the community: A matter of choice. American Journal on Mental Retardation, 92, 331-335.

Ellis, J. W. (1990). Presidential address 1990—Mental retardation at the close of the 20th century: A new realism. Mental Retardation, 28, 263-267.

Felce, D. (1995). Summing up: Safeguarding quality. In D. Pilling & G. Watson (Eds.), Evaluating quality in services for disabled and older people (pp. 213-216). London, UK & Bristol, PA: Jessica Kingsley Publishers.

Flynn, R. J. (1993). Intégration et évaluation de programmes: Comparaisons internationales. In S. Ionescu, G. Magerotte, W. Pilon, & R. Salabreux (Eds.), L’intégration des personnes présentant une déficience intellectuelle (pp. 5-15). Actes du IIIe Congrès de l’Association internationale de recherche scientifique en faveur des personnes handicapées mentales (AIRHM). Trois-Rivières, QC: Université du Québec à Trois-Rivières et AIRHM.

Flynn, R. J. (1994). L’intégration sociale entre 1982 et 1992: Définitions conceptuelles et opérationnelles. In Office des personnes handicapées du Québec (Ed.), Élargir les horizons: Perspectives scientifiques sur l’intégration sociale (pp. 515-525). Sainte-Foy, QC & Paris: Éditions Multimondes et Agence Ibis Press.

Flynn, R. J., Guirguis, M., Wolfensberger, W., & Cocks, E. (in press). Cross-validated factor structures and factor-based subscales for PASS and PASSING. Mental Retardation.

Flynn, R. J., Lapointe, N., Wolfensberger, W., & Thomas, S. (1991). Quality of institutional and community human service programs in Canada and the United States. Journal of Psychiatry and Neuroscience, 16, 146-153.

Goldstein, M. B., Brown, C. H., & Goodrich, E. J. (1989). Public preferences and site location of residential treatment facilities. Journal of Community Psychology, 19, 186-193.

Gottlieb, B. H. (1983). Social support strategies: Guidelines for mental health practices. Beverly Hills, CA: Sage.

Gordon, L. R., Burchard, S. N., Hasazi, J. E., Yoe, J. T., Dietzel, L. C., & Simoneau, D. (1992). Stability and change in the life-style and adjustment of adults with mental retardation living in community residences. In J. W. Jacobson, S. N. Burchard, & P. J. Carling (Eds.), Community living for people with developmental and psychiatric disabilities (pp. 167-182). Baltimore: John Hopkins University Press.

Groupe de travail ministériel sur l’examen des programmes. (1987). L’intégration des personnes présentant une déficience intellectuelle, un impératif humain et social. Rapport préliminaire. Québec, QC: Ministère de la Santé et des Services sociaux.

Groupe de travail ministériel sur l’examen des programmes. (1988). L’intégration des personnes présentant une déficience intellectuelle, un impératif humain et social, orientations et guide d’action. Québec, QC: Ministère de la Santé et des Services sociaux.

Haelewyck, M. C. (1995-1996). Le réseau de soutien social et les activités des personnes adultes qui présentent un retard mental et vivent dans des conditions résidentielles contrastées. Unpublished doctoral dissertation, Faculté des Sciences Psycho-Pédagogiques, Université de Mons-Hainaut, Belgique.

Halpern, A. S. (1989). A systematic approach to transition programming for adolescents and young adults with disabilities. Australia and New Zealand Journal of Developmental Disabilities, 15, 1-13.

Halpern, A. S., Nave, G., Close, D. W., & Nelson, D. (1986). An empirical analysis of the dimensions of community adjustment for adults with mental retardation in semi-independent living programs. Australia and New Zealand Journal of Developmental Disabilities, 12, 147-157.

Hasazi, J. E., Burchard, S. N., Gordon, L. R., Vecchione, E., & Rosen, J. W. (1992). Adjustment to community life: The role of stress and support variables. In J. W. Jacobson, S. N. Burchard, & P. J. Cabling (Eds.), Community living for people with developmental and psychiatric disabilities (pp. 111-124).Baltimore: John Hopkins University Press.

Heal, L. W. (1988). The ideological responses of society to its handicapped members. In L. W. Heal, J. I. Haney, & A. R. Novak Amado (Eds.), Integration of developmentally disabled individuals into the community (2nd ed., pp. 59-67). Baltimore: Paul H. Brookes.

Heitzmann, C. A., & Kaplan, R. M. (1988). Assessment of methods for measuring social support. Health Psychology, 7, 75-109.

Hobfoll, S. E., & Vaux, A. (1993). Social support: Social resources and social context. In L. Goldberger & S. Breznitz (Eds.), Handbook of stress: Theoretical and clinical aspects (2nd ed., pp. 685-705). New York: Free Press.

House, J. S., & Kahn, R. L. (1985). Measures and concepts of social support. In S. Cohen & S. L. Syme (Eds.), Social support and health (pp. 83-108). Orlando, FL: Academic Press.

Ionescu, S., Magerotte, G., Pilon, W., & Salbreux, R. (1993). Intégration des personnes présentant une déficience intellectuelle. Actes du IIIe Congrès de l’Association internationale de recherche scientifique en faveur des personnes handicapées mentales, Trois-Rivières, Québec, 23-25 août 1993. Trois-Rivières, QC: Université du Québec à Trois-Rivières et AIRHM.

Jacobson, J. W., Burchard, S. N., & Carling, P. J. (1992). Summary: Community living and community engagement. In J. W. Jacobson, S. N. Burchard, & P. J. Carling (Eds.), Community living for people with developmental and psychiatric disabilities (pp. 303-306). Baltimore: John Hopkins University Press.

Kennedy, C. H., Horner, R. H., & Newton, J. S. (1989). Social contacts of adults with severe disabilities living in the community: A descriptive analysis of relationship patterns. Journal of the Association for Persons With Severe Handicaps, 14, 190-196.

Kennedy, C. H., Horner, R. H., & Newton, J. S. (1990). The social networks and activity patterns of adults with severe disabilities: A correlational analysis. Journal of the Association for Persons With Severe Handicaps, 15, 86-90.

Koehly, L. M., & Shivy, V. A. (1998). Social network analysis: A new methodology for counseling research. Journal of Counseling Psychology, 45, 3-17.

Kozleski, E. B., & Sands, D. J. (1992). The yardstick of social validity: Evaluating quality of life as perceived by adults without disabilities. Education and Training in Mental Retardation, 27, 119-131.

Kruzich, J. M. (1985). Community integration of the mentally ill in residential facilities. American Journal of Community Psychology, 13, 553-564.

Lakin, K. C., & Bruininks, R. H. (1985). Contemporary services for handicapped children and youth. In R. H. Bruininks & K. C. Lakin (Eds.), Living and learning in the least restrictive environment (pp. 3-22). Baltimore: Paul H. Brookes.

Mank, D.M., & Buckley, J. (1989). Strategies for integrating employment environments. In W. Kiernan & R. Schalock (Eds.), Economics, industry, and disability: A look ahead (pp. 319-335). Baltimore: Paul H. Brookes.

Mcgrew, K. S., Bruininks, R. H., & Thurlow, M. L. (1992). Relationship between measures of adaptive functioning and community adjustment for adults with mental retardation. Exceptional Children, 58, 517-529.

Mcgrew, K. S., Bruininks, R. H., Thurlow, M. L., & Lewis, D. (1992). Empirical analysis of multidimensional measures of community adjustment for young adults with mental retardation. American Journal on Mental Retardation, 96, 475-487.

Mechanic, D., & Rochefort, D. A. (1990). Deinstitutionalization: An appraisal of reform. Annual Review of Sociology, 16, 301-327.

Moos, R. (1972). Assessment of the psychosocial environment of community-oriented psychiatric treatment programs. Journal of Abnormal Psychology, 79, 9-18.

Nelson, G., Hall, G. B., Squire, D., & Walshbowers, R. T. (1992). Social network transactions of psychiatric patients. Social Science and Medicine, 34, 433-445.

Newman, S. J. (1994). The housing and neighborhood conditions of persons with severe mental illness. Hospital and Community Psychiatry, 45, 338-345.

Newton, J. S., & Horner, R. H. (1993). Using a social guide to improve social relationships of people with severe disabilities. Journal of the Association for Persons With Severe Handicaps, 18, 36-45.

Newton, J. S., & Horner, R. H. (1995). Feedback to staff on resident lifestyle: A descriptive analysis. Behavior Modification, 19, 95-118.

Newton, J. S., Horner, R. H., Ard, Jr., W. W., Lebaron, N., & Sappington, G. (1994). A conceptual model for improving the social life of individuals with mental retardation. Mental Retardation, 32, 393-402.

Newton, J. S., Olson, D., & Horner, R. H. (1995). Factors contributing to the stability of social relationships between individuals with mental retardation and other community members. Mental Retardation, 33, 383-393.

Newton, J. S., Ard, Jr., W. R., Horner, R. H., & Toews, J. D. (1996). Focusing on values and lifestyle outcomes in an effort to improve the quality of residential services in Oregon. Mental Retardation, 34, 1-12.

Nirje, B. (1969). The Normalization principle and its human management implications. In R. B.

Kugel&W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded. Washington, DC: President’s Committee on Mental Retardation.

Nirje, B. (1976). The Normalization principle and its human management implications. In R. B. Kugel&A. Shearer (Eds.), Changing patterns in residential services for the mentally retarded. Washington, DC: President’s Committee on Mental Retardation.

Nirje, B. (1980). The Normalization principle. In R. J. Flynn & K. E. Nitsch (Eds.), Normalization, social integration and community services (pp. 31-49). Baltimore: University Park Press.

Office des personnes handicapées du Québec. (1984). À part... égale. L’intégration sociale des personnes handicapées: Un défi pour tous. Drummondville: Les Publications du Québec.

Office des personnes handicapées du Québec. (1994). Élargir les horizons: Perspectives scientifiques sur l’intégration sociale. Sainte-Foy, QC & Paris: Éditions Multimondes et Agence Ibis Press.

Ouellette, L., Horner, R. H., & Newton, J. S. (1994). Changing activity patterns to improve social networks: A descriptive analysis. Behavioral Interventions, 9, 55-66.

Parks, S. H. & Pilisuk, M. (1984). Personal support systems of former mental patients residing in board and care facilities. Journal of Community Psychology, 12, 230-244.

Pedlar, A. (1990). Normalization and integration: A look at the Swedish experience. Mental Retardation, 28, 275-282.

Perreault, G. J. (1992). Une attitude de gagnant. L’Intégration, 3(4), 2.

Pilling, D. (1995). Do PASS and PASSING pass? A critique of PASS/ING. In D. Pilling & G. Watson (Eds.), Evaluating quality in services for disabled and older people (pp. 50-60). London, UK & Bristol, PA: Jessica Kingsley Publishers.

Randolph, F. L., Ridgway, P., & Carling, P. J. (1991). Residential program for persons with severe mental illness: A nationwide survey of state-affiliated agencies. Hospital and Community Psychiatry, 42, 1111-1115.

Ridgway, P., & Zipple, A. (1990). The paradigm shift in residential services: From the linear continuum to supported housing approaches. Psychosocial Rehabilitation Journal, 13,11-31.

Rhoades, C., & Browning, P. (1982). Normalization of a deviant subculture: Implications of the movement to resocialize mildly retarded people. Mid-American Review of Sociology, 7(1), 139-170.

Rosen, J. W., & Burchard, S. N. (1990). Community activities and social support networks: A social comparison of adults with and adults without mental retardation. Education and Training in Mental Retardation, 25, 193-204.

Schalock, R. L. (1990a). Where do we go from here? In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 235-240). Washington, DC: American Association on Mental Retardation.

Schalock, R. L. (1990b). Attempts to conceptualize and measure quality of life. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 141-148). Washington, DC: American Association on Mental Retardation.

Schalock, R. L. (1994). Quality of life, quality enhancement, and quality assurance: Implications for program planning and evaluation in the field of mental retardation and developmental disabilities. Evaluation and Program Planning, 17, 121-131.

Schalock, R. L. (1996). Reconsidering the conceptualization and measurement of quality of life. In R. L. Schalock (Ed.), Quality of Life. Vol. I: Conceptualization and measurement (pp. 123-139). Washington, DC: American Association on Mental Retardation.

Schalock, R. L. (1997). Can the concept of quality of life make a difference? In R. L. Schalock (Ed.), Quality of Life. Vol. II: Application to persons with disabilities (pp. 245-267). Washington, DC: American Association on Mental Retardation.

Schalock, R.L., & Keith, R. D. (1993). Quality of life questionnaire. Worthington, OH: IDS Publication Co.

Schalock, R. L., Keith, K. D., Hoffman, K., & Karan, O. C. (1989). Quality of life: Its measurement and use. Mental Retardation, 27, 25-31.

Schalock, R. L., Lemanowicz, J. A., Conroy, J. W., & Feinstein, C. S. (1994). A multivariate investigative study of the correlates of quality of life. Journal on Developmental Disabilities, 3, 59-73.

Segal, S. P., & Aviram, U. (1978). The mentally ill in community-based sheltered care: A study of community care and social integration. New York: John Wiley & Sons.

Segal, S. P., Baumohl, J., & Moyles, E. W. (1980). Neighborhood types and community reaction to the mentally ill: A paradox of intensity. Journal of Health and Social Behavior, 21, 345-359.

Segal, S. P., & Kotler, P. (1993). Sheltered care residence: Ten year personal outcomes. American Journal of Orthopsychiatry, 63, 80-91.

Sherman, S. R., Frenkel, E. R., & Newman, E. S. (1986). Community participation of mentally ill adults in foster family care. Journal of Community Psychology, 14, 120-133.

Storey, K. (1989). A proposal for assessing integration. Education and Training in Mental Retardation, 24, 279-287.

Trainor, J., Morrell-Bellai, T. L., Ballantyne, R., & Boydell, K. M. (1993). Housing for people with mental illness: A comparison of models and an examination of the growth of alternative housing in Canada. Canadian Journal of Psychiatry, 38, 494-501.

Trute, B. (1986). Sheltered housing for the chronic psychiatric patient: The influence of operators of board and care facilities in community participation. Canadian Journal of Community Mental Health, 5, 31-38.

Trute, B., & Segal, S. (1976). Census tract predictors and the social integration of sheltered care residents. Social Psychiatry, 13, 153-161.

Veiel, H. O. F., & Baumann, U. (Eds.). (1992). The meaning and measurement of social support. New York: Hemisphere.

Weinberg, R. B. (1984, August). Development of self-report for reliably measuring the social support system. Paper presented at the Annual Convention of the American Psychological Association, Toronto, Ontario.

Will, M. (1984). Supported employment for adults with severe disabilities: An OSERS program initiative. Washington, DC: Office of Special Education and Rehabilitative Services.

Wolfensberger, W. (1972). The principle of Normalization in human services. Toronto: National Institute on Mental Retardation.

Wolfensberger, W. (1980). The definition of Normalization: Update, problems, disagreements and misunderstandings. In R. J. Flynn & K. E. Nitsch (Eds.), Normalization, social integration, and community services (pp. 71-115). Baltimore: University Park Press.

Wolfensberger, W. (1998a). A brief introduction to Social Role Valorization: A high-order concept for addressing the plight of societally devalued people, and for structuring human services (3rd ed., rev.). Syracuse, NY: Syracuse University, Training Institute for Human Service Planning, Leadership and Change Agentry.

Wolfensberger, W. (1998b). “Mainstreaming” and “inclusion” versus real integration [Section of column, “Social Role Valorization news and reviews”]. International Social Role Valorization Journal, 3(1), 58-60.

Wolfensberger, W., & Glenn, L. (1975). Program analysis of service systems: A method for the quantitative evaluation of human services. Vol. 1: Handbook. Vol 2: Field manual (3rd ed.). Toronto: National Institute on Mental Retardation.

Wolfensberger, W., & Glenn, L. (1989). Programme d’analyse des systèmes de services (PASS 3): Méthode d’évaluation quantitative des services humains (version européenne). Agen, France: Comité Européen pour le Développement de l’Intégration Sociale.

Wolfensberger, W., & Thomas, S. (1983). PASSING (Program Analysis of Service Systems’ Implementation of Normalization Goals): Normalization criteria and ratings manual. (2nd ed.) Toronto: National Institute on Mental Retardation.

Wolfensberger, W., & Thomas, S. (1989). PASSING (Programme d’analyse des systèmes de services—Applications des buts de la valorisation des rôles sociaux): Manuel des critères et des mesures de la valorisation des rôles sociaux (2nd. ed.) (M. Roberge, Trans.; J. Pelletier, Adapt.). Toronto: G. Allan Roeher Institute & Les Communications OPELL.

Autoren

Ph.D., Professor, Community Services Research Unit, School of Psychology, University of Ottawa, Ottawa, ON, Canada

Ph.D., Associate Professor, Community Services Research Unit, School of Psychology, University of Ottawa, Ottawa, ON, Canada

© Les Presses de l’Université d’Ottawa | University of Ottawa Press, 1999

Nutzungsbedingungen http://www.openedition.org/6540