Integration as Acculturation: Developmental Disability, Deinstitutionalization, and Service Delivery Implications

Integration as Acculturation: Developmental Disability, Deinstitutionalization, and Service Delivery Implications M. KATHERINE BUELL ongwanada kingston, ontario, canada

I.

THE THEORY BASIS FOR LOOKING AT INTEGRATION AS ACCULTURATION

The major purpose of this chapter is to discuss issues related to service delivery models of community involvement (or deinstitutionalization) for persons with developmental disabilities.1 Since the mid-1970s, service delivery for persons with developmental disabilities has emphasized community involvement or integration. The pressures for this change in service delivery from congregate and isolated service delivery to community-based service delivery are multiple, but a major influence has been the principle of normalization (Elks, 1994; Wolfensberger, 1972, 1983). In practical terms, normalization emphasizes that all individuals are entitled to a ‘‘normal’’ style of life and should have the right to participate in activities common to similarly aged members of their society (Zigler, Hodapp, & Edison, 1990). This principle has pervaded the development of community services for persons with developmental disabilities in all forms and for all ages (Heal, 1988). It has influenced planning for deinstitutionalization and teaching within schools. Human services throughout North America have incorporated some variation of Wolfensberger’s definition of normalization 1

In this chapter, the term persons with developmental disability is used for people who have also been identified as people with mental retardation, mental deficiency, or developmental handicap. INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 26 0074-7750/03 $35.00

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Copyright 2003 Elsevier Science (USA). All rights reserved.

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into their formal goals of service delivery (McCord, 1982). The direct influence of normalization has been reflected in legislation. In the United States, for example, the Education for All Handicapped Children Act (P. L. 94–142) (1975) assured education for all children and gave rise to the term ‘‘mainstreaming.’’ In Canada, a second example is The Education Amendment Act (1982) in Ontario, which legislated that the needs of children be met in community schools with their peers. The indirect influence of normalization can be seen in the pervasive use of the term age appropriate when describing or planning aspects of service delivery. Since its introduction as a service delivery philosophy, the principle of normalization has been controversial (Landesman-Dwyer & Butterfield, 1987). The source of the controversy relates to the identified lack of theoretical support or empirical referents for services. The principle of normalization shifted service delivery emphasis from isolated and institutional practices to community-based and noninstitutional practices. As a result, large numbers of persons with developmental disabilities were discharged from institutions into the community (deSilva & Higenbottam, 1983). The service delivery emphasis on deinstitutionalization provided increasing numbers of community-based residential services. Authors have listed at least 40 different terms to describe these alternatives (Bruininks, Rotegard, Lakin, & Hill, 1987; Butler & Bjaanes, 1978). These alternative community-based services were implicitly mandated to provide the supports necessary to effect the incorporation of people with developmental disabilities into the mainstream of society (Emerson, 1985). However, the principle of normalization adopted by service providers failed to provide direction about the practical implementation of the philosophy of normalization. In more contemporary language, the principle or philosophy did not address the types of supports or service delivery requirements needed by the individuals living in these alternatives that would enable them to participate in a ‘‘normal’’ lifestyle. The initial appeal of normalization, as an impassioned alternative to institutionalization, has lost some of its early momentum in the context of smaller, less isolated, community alternatives (Mesibov, 1990). The contemporary issue becomes one of applying the normalization philosophy to the community alternatives that deinstitutionalization has created. Further discussion regarding the discrepancy between the theory and the application of normalization can be found in Flynn and Lemay (1999). In summary, the influence of normalization has resulted in furthering the deinstitutionalization of persons with developmental disabilities and promoting their involvement within the community. The appeal of the principle of normalization is on a humane level and has been invaluable toward overcoming the historic isolation associated with having a developmental

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disability. However, the lack of empirical evaluation on the part of service delivery providers of the principle of normalization and its assumptions and outcomes has contributed to the controversy that normalization has generated. Ironically, this controversy has hindered the service delivery efforts it originally inspired. It has become increasingly important to provide a theoretical perspective that examines service delivery assumptions, directs service delivery efforts, and evaluates their effectiveness. A.

Acculturation Framework

A theoretical perspective to investigate the service delivery assumptions underlying deinstitutionalization as derived from normalization can be borrowed from cross-cultural psychology or, more specifically, ethnic psychology. The Canadian multicultural emphasis provides a heuristic perspective from which to view smaller groups within a larger group. The acculturation framework, developed by Berry (1984, 1993) for the study of culture contact and acculturation, concisely describes the various ways in which smaller (ethnocultural) groups can interact within the larger (cultural) group. Affirmative or negative resolutions to two hypothetical issues define one of four acculturation relationships. These issues relate (1) to the importance of maintaining the distinctiveness of a smaller group apart from the larger dominant group (Issue 1: Is it considered to be of value to maintain cultural identity and characteristics?) and, (2) to what extent are positive relations sought by a smaller group with the larger group (Issue 2: Is it considered to be of value to maintain relationships with other groups?). The two-by-two matrix resulting from the resolution of these two issues defines integration, assimilation, segregation, and marginalization. These four options reflect the manner in which the smaller and larger groups interact or have cultural contact. Table I illustrates the acculturation framework.

TABLE I Options Defined by the Original Acculturation Framework Issue 1: Is it considered to be of value to maintain cultural identity and characteristics? Issue 2: Is it considered to be of value to maintain relationships with other groups?

Yes No

Yes Integration Segregation

No Assimilation Marginalization

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Integration results when both of the two issues are resolved affirmatively; the smaller group wishes to maintain cultural identity and characteristics while maintaining positive relations with the dominant culture. Assimilation results when the resolution to Issue 1 is negative (cultural identity is not valued and maintained) and the resolution to Issue 2 is affirmative (relationship is maintained); the smaller group minimizes distinctiveness and shares positive relations with the dominant group. Integration and assimilation, therefore, are defined by an affirmative answer for positive relations with the culture at large. In contrast, when relations are not maintained with the culture at large, the resolution of Issue 2 defines segregation (or separation) and marginalization. Segregation (or separation) is defined when the resolution to Issue 1 is affirmative, while the resolution to Issue 2 is negative: the smaller group wishes to maintain its cultural identity and distinctive characteristics independent of relations with the larger group. The empowerment of the smaller group in deciding its relationship with the larger group distinguishes separation (i.e., the group has the power to decide) from segregation (i.e., the group does not have the power to decide). Marginalization results when the resolution to both issues is negative. The smaller group’s distinctiveness (cultural identity) is not valued or retained, and therefore becomes confused, and maintaining relations with the dominant culture is not valued or sought and is therefore ambiguous. Thus the acculturation framework defines four cultural relationship options. Several examples can illustrate the framework. First Nations Peoples’ reclamation of their heritage can be defined within the framework as a process shifting from a segregated to a separated situation, from within the First Nation perspective. In contrast, however, marginalization also describes this situation. There is a loss of unique cultural identity and little contact with the larger culture. The former situation is a goal whereas the latter condition is a reality. The nationalist Que´ be´ cois reflect the separation option if they are viewed as having the power to promote their cultural characteristics as unique and that they choose to end ongoing contact with the dominant Canadian culture. Different immigration policies in North America illustrate the definition of assimilation (the ‘‘melting pot’’ of the United States) versus integration (the legislated ‘‘multiculturalism’’ of Canada). B.

The Acculturation Framework Adapted to Developmental Disabilities

Several authors have described persons with developmental disabilities as a subculture (Bercovici, 1981, 1983; Landesman-Dwyer & Berkson, 1984;

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integration as acculturation TABLE II Options in the Adapted Acculturation Framework

Issue 1: Is it considered valuable to recognize and support the unique characteristics of persons with developmental disability? Issue 2: Is it considered valuable for persons with developmental disability to maintain relationships with other groups?

Yes No

Yes Integration Segregation

No Assimilation Marginalization

Rhoades & Browning, 1982), that is, as a smaller group within the larger group. The author revised Berry’s original acculturation framework to incorporate the perspective of developmental disabilities. In adapting the framework to developmental disabilities, the author made three explicit premises: (1) the smaller group becomes persons with developmental disability, (2) cultural identity is analogous to the characteristics of the disability, and (3) the cultural relationship is defined by service delivery. The adapted acculturation framework (Table II) redefines the issue of valuing and retaining cultural identity and characteristics into terms related to recognizing and supporting the characteristics of persons with developmental disabilities. Issue 1 becomes ‘‘Is it considered valuable to recognize and support the unique characteristics of persons with developmental disabilities?’’ It is possible to explore normalization using the adapted acculturation issues as stated in the framework. Assuming that relations with the culture are maintained (an affirmative resolution to Issue 2), the upper row of the matrix in Table II becomes relevant. Normalization, by definition as a philosophy, minimizes differences or deemphasizes unique characteristics (Rhoades & Browning, 1982; Wolfensberger, 1972, 1983), and it follows that assimilation would be the optimum service delivery outcome for persons with developmental disabilities. Alternatively, the recognition of differences or an emphasis on unique characteristics results in another option, integration, where service delivery stresses the need both for supports for these characteristics and for maintaining relations with the larger community. The acculturation framework can be discussed from a number of points of views: society, service providers, and persons with developmental disability. The types of questions asked can be attributed to these differing perspectives. The different perspectives also contribute to controversies. Because the purpose of this discussion is to provide a theoretically based

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outcome measure related to deinstitutionalization, the perspective that will be taken is that of the service providers. Controversies related to the implementation of the principle of normalization can arise from differing approaches regarding the importance of the unique characteristics of individuals with developmental disabilities. In the adapted acculturation framework, the terms are defined more clearly. ‘‘Assimilation’’ and ‘‘integration’’ are not used interchangeably as they frequently are in the literature on deinstitutionalization; rather, these terms refer to two distinct situations. The normalization implementation controversy resolves itself if service provides can identify which emphasis is placed on the characteristics of developmental disability (valuing similarity with the culture leads to assimilation versus valuing difference, which leads to integration) while emphasizing ongoing contact with the culture (Issue 2). In adapting the acculturation framework, Issue 2 is essentially unchanged. The purpose of service delivery and deinstitutionalization is involvement with the community at large. Issue 2 becomes ‘‘Is it considered valuable for persons with developmental disabilities to maintain relationships with other groups?’’ In reference to the framework, the lower half of the matrix becomes relevant. A negative resolution to this issue will result in segregation/separation or marginalization. Because the influence of normalization was fundamental to community living (i.e., maintaining relations with other groups) further elaboration related to Issue 2 is provided. C.

Service Delivery, Normalization, and Cultural Relationship

In the adapted acculturation framework, Issue 2, which describes relationship with the general community (large group), also defines the role of service delivery. At the same time, service delivery is defined by normalization. Here 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, services that transform people from visible to invisible (Rhoades & Browning, 1982). The adapted acculturation framework shows that service delivery based on normalization principles should deemphasize the unique characteristics of persons with developmental disabilities. The resolution to Issue 1, ‘‘Whether the unique characteristics of persons with developmental disabilities are recognized and supported?’’, would be negative. This is what is stated explicitly in the definition of normalization. The resolution to Issue 2 is also found in the definition of normalization. ‘‘Utilization of means as culturally normative as possible’’ (Wolfensberger,

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1972, p. 28) assumes an affirmative resolution to Issue 2. The resolution to ‘‘Is it considered of value for persons with developmental disabilities to maintain relationships with other groups?’’ would be affirmative. Therefore, service delivery outcomes would include positive relationships with the culture. The expected outcome for deinstitutionalization is a positive resolution to Issue 2. Referring to the matrix in Table II, service delivery based on normalization would define a successful outcome as assimilation. However, if the major focus of service delivery and deinstitutionalization is repatriation into the culture, then a successful outcome would be defined by an affirmative resolution to only Issue 2, thus providing two service delivery options: integration and assimilation.

D.

Support for the Approach within the Literature

STUDY 1: META-ANALYTIC

The adapted acculturation framework provides a theoretical basis for exploring the issues related to deinstitutional outcome. A series of studies were conducted to explore the validity of the premises used in adapting the acculturation framework to investigate the assumptions of the applications of the principle of normalization. In the first of these studies, options in the adapted acculturation framework were operationalized parsimoniously in terms of three premises: persons with developmental disabilities as the smaller group or subculture; unique characteristics of developmental disabilities being identified through the use of the term special (to reflect special needs); and the relationship with the community indicated by mention of community involvement. A quantitative review of the literature on deinstitutionalization, using meta-analytic techniques, was conducted. a. Procedure. Criteria for the meta-analysis were set prior to rating the studies found in the literature. Literature searches were conducted in the following data bases: Educational Resources Information Centre (ERIC); Psychological Abstracts (PsycLit); Dissertation Abstracts; and Medline. The key words used for searches included deinstitutionalization, mental retardation services, normalization, integration, mainstreaming, community living, group homes, mentally handicapped, mental retardation, developmental handicap, and mental retardation-rehabilitation. A study was included when it met four criteria: (1) the study concerned persons identified as having subnormal intelligence; (2) the study was undertaken between the years 1972 and 1988 as part of a dissertation literature review; (3) the study involved a change in living situation from one alternative to another; and (4) the study did not involve litigation unless the results included outcome data

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M. Katherine Buell TABLE III Framework Applied to the Outcome Literature

Integration 17.4% The alternative is identified as ‘‘special’’— supports and services are provided through the community or generic services but may require specialist/facility supports

Assimilation 2.1% Services and supports are provided through community and generic services

Aggregation of retarded individuals is implied as necessary or important in certain cases/situations

The setting emphasizes similarities with the general community and has ongoing positive relationships with the community

There is no aggregating of retarded individuals or identification as ‘‘special’’

The setting recognizes the need for supports (emphasizes differences) and has ongoing positive relationships with the community Segregation 26% The alternative is identified as ‘‘special’’— supports and services are provided through specialists and are directed at the needs of the occupants of the setting and there is little emphasis on the use of generic services Aggregation is the expected manner of service delivery

Marginalization 0% The alternative is vaguely identified There is minimal mention of supports and services The situation appears to be isolating, warehousing with little emphasis on individual needs

The setting emphasizes need for supports and has little relationship with the community

to avoid confounding service delivery models. Seventy-five studies meeting the criteria were located and obtained. Each study was read and rated according to specific criteria established prior to reading the article.2 These coding criteria were derived for study demographics, moderating variables, and effect size variables. Interrater reliability for coding criteria was determined to be 88% on average, ranging from 67 to 100% agreement for each item. b. Results. Table III describes specific criteria that were used to apply the adapted acculturation framework. The statements in each of the boxes define the deinstitutionalization outcome alternative for the various acculturation categories. The percentages in each category represent the proportion of studies that met the specific criteria for that category (assimilation, integration, marginalization, segregation).

2

The template used to rate the articles is available from the author.

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c. Discussion. Results of this review contradicted the expected service delivery outcome as defined by the adapted acculturation framework based on the implementation of the normalization philosophy (i.e., assimilation, minimizing unique characteristics and maintaining ongoing contacts). Regarding the first assumption, minimizing unique characteristics, the majority of deinstitutional outcome studies (43.4%) were coded as integration or segregation. This result suggests that the unique characteristics of persons with developmental disability were recognized by service delivery providers reported in the literature. This is in contrast to the ideological aims of normalization as described through the acculturation framework. The second assumption regarding maintaining contact with the dominant culture was also contradicted by data. A majority (26%) of the discrete options within the framework were classified using the segregation option. This result was counter to the theoretical intent of service delivery and conflicts with normalization principles. In terms of Issue 2, maintaining contact with the larger culture, the actual segregation effect of deinstitutionalization contrasted with the ideal assimilation goal. Statistically, the expectations of minimized uniqueness and maintaining contact were not supported. Given that deinstitutionalization of persons with developmental disability presumably had normalization principles as a theoretical base, it would be hypothesized that assimilation would have a greater percentage of alternative outcomes. However, the
2 statistic was nonsignificant ½ð
2 ¼ 1:57;
2c ð:05Þ ¼ 3:84Þ. These outcome data, therefore, did not support the theoretical alternative of assimilation. Forty-six studies potentially provided information that could be rated using the adapted acculturation model. Fifty-four percent of these studies could not be classified. This unclassified result is significant for two reasons. First, although the stated aim of the reviewed research was the evaluation of deinstitutional outcome, 54% of these studies presented no information about community relationships or supporting unique characteristics. Second, this lack of information illustrates a methodological artifact within the deinstitutionalization outcome literature. While the studies claim to be evaluating service delivery outcome (deinstitutionalization), the focus of this outcome research generally is on individual outcome measures, predominantly related to adaptive behavior (80%), and not on aspects of service delivery. Despite the shift in emphasis implied in deinstitutionalization, that is, from the individual to the services provided for that individual to be part of the community (Zigler & Hodapp, 1986), these studies continue to emphasize individual outcomes. Emphasizing individual outcomes rather than service delivery outcomes perpetuates theoretically incongruent research. The adapted acculturation framework overcomes this incongruency by

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providing a theoretical perspective that defines service delivery outcome that does not rely on individual attributes. In summary, the adapted acculturation framework defines the ideal service delivery outcome from a normalization perspective as assimilation (i.e., the unique characteristics of persons with developmental disability are deemphasized while maintaining ongoing cultural contacts). The adapted acculturation framework, operationalized and applied to the outcome literature, illustrates actual service delivery outcome as integration and segregation (i.e., the unique characteristics of persons with developmental disability are not deemphasized). The framework also provides a clarifying definition for service delivery outcome. This overcomes the methodological artifact (individual measures) currently limiting the literature on deinstitutionalization and is more in agreement with current trends in service delivery emphasizing systems of support (AAMR, 1992, 2002). The results of study 1 endorsed the application of the adapted acculturation framework within the literature. The premises used to adapt the framework were workable and provided a useful means for defining and measuring service delivery outcome (Buell & Minnes, 1994a,b).

E.

Support for the Approach Applied within the Field of Developmental Disability

STUDY 2: APPLIED

The results of study 1 provided information about the theoretical usefulness of the acculturation perspective in evaluating deinstitutional outcome. The major goals of study 2 were to extend the results of study 1 and to determine the practical utility of the adapted acculturation framework as an outcome measure, which in turn could direct service delivery more efficiently. This second study investigated whether the adapted acculturation framework provided an appropriate frame of reference for defining an outcome measure, to evaluate residential alternatives for people with developmental disabilities. The perspectives that were synthesized to influence the design of the applied study are described here and summarized in Table IV. Service delivery related to residential alternatives can be defined from varying theoretical perspectives. First, to anchor the discussion, the deinstitutionalization process reflects a continuum of service delivery alternatives ranging from institutional to community arrangements. The first column of Table IV illustrates this continuum, with institutional living at the top and community living at the bottom. Second, the deinstitutionalization process can be compared to a developmental process that

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integration as acculturation TABLE IV Synthesis of Various Perspectives Directing Research on Community Living

Service delivery Institutional living

Bronfenbrenner’s developmental environments

Research significance

Immediate settings: particular places in which person engages in activities in a particular role Interactions among settings: expanding successive shifts in role and setting

Community living

Other contributions

Moos: social climate approach Wolfensberger: normalization in practice Berry: acculturation framework

Environmental assessment

Outcome definition

Formal and informal social contexts: neighborhood media, distribution of goods and services

parallels the expanding developmental environments as discussed by Bronfenbrenner (1977). Bronfenbrenner described increasingly complex person–environment interactions as a person grows, beginning simply as a person relating to the immediate environment, gradually taking on more roles in differing expanding environments, and finally becoming a complex person with roles in society. In an analogous way, the goals of service delivery along the service delivery continuum, from simple institutional environments to complex community-based environments, can theoretically coincide with the expanding and more complex environments identified by Bronfenbrenner. The expanding environments described by Bronfenbrenner can be defined as relating to the expanding roles for the person with a disability along the service delivery continuum. The second column in Table IV represents these expanding levels of environment, which helps define residential service delivery alternatives. In order to evaluate outcome, an environmental measure rather than an individual measure was required for assessing service delivery outcome.

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A rationale for an appropriate environmental measure can be found by defining service delivery in terms analogous to Bronfenbrenner’s developmental/environmental levels. Bronfenbrenner’s environmental levels can provide a common ground for the elements of the research: normalization, environmental assessment, and acculturation as outcome. The third column of Table IV illustrates the connection. First, normalization, a major influence against institutional living, has the theoretical expectation of community living. In terms of Bronfenbrenner’s model, the theoretical aspect of normalization is defined at the third level of environment (formal and informal social contexts). The results of study 1 (integration versus assimilation) show that in practice the second level (interactions among settings) is the level conceptually more appropriate for defining environment. Despite the fact that deinstitutionalization is an obvious change of environment, there has been very little attention paid to environmental assessment (Buell, 1987, 1989, 1990). Bronfenbrenner’s levels of developmental environment suggest an appropriate level of environmental assessment for deinstitutionalization. Bronfenbrenner’s first level defines ‘‘a role within a setting.’’ This level of assessment is too narrow. This focus on the discrete roles of the individual in a setting provides an explanation for the overuse of individual measures in researching deinstitutionalization. To look properly at outcome, it is necessary to move away from the level of the individual to a level that includes the environment or context(s) for the individual. The second level, interactions between roles and settings, describes a level of appropriate complexity. With deinstitutionalization, it can be argued that there has been a change in the service delivery emphasis from one role (patient) to varied roles. The person is involved in various settings, helped by multidisciplinary staff to fit varied roles (student, employee, family member, resident, patient, decision maker). This diversity of roles can be defined in terms of Bronfenbrenner’s second environmental level. Within this level, deinstitutionalization aims to support growing independence. For this second level, service provision for persons with developmental disabilities reflects itself in the multidisciplinary nature of supports provided, as well as an active attempt by service providers to foster varied roles. The aim of service provision at this level is to encourage the individual’s exposure and transition among many environments and roles. Success can be decided by individual autonomy, independence, and involvement. These successful characteristics are the same elements deemed important in Moos’ (1976) social climate approach. Moos stated ‘‘every institution in society attempts to maximize certain directions of personal growth and development’’ (p. 42). He claimed that the social climate within which an individual functions has an important impact on a person’s attitude, mood, and behavior. For this

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research, Moos’ social climate approach to environmental assessment matched this level of complexity and provided the rationale for using these scales to measure environments (Buell, 1990). In the present work, deinstitutionalization has been defined a third way. Deinstitutionalization and service delivery have been defined in terms of acculturation (Berry’s framework; Buell, 1995). The adapted acculturation perspective provides a definition for ‘‘community living’’ outcome, the goal of deinstitutionalization. The statements used in study 1 were operationalized further by composing statements related to Issues 1 and 2 to reflect actual service delivery. In summary, Berry’s acculturation framework provided the definition for the outcome of the service delivery goal of deinstitutionalization. Moos’ environmental assessment approach supplied an objective environmental measure that could be related to this outcome at the appropriate developmental process as described by Bronfenbrenner. In order to evaluate the practical utility of the adapted acculturation framework as an outcome measure, this theoretical combination resulted in the following hypotheses. First, generally, it was predicted that the four relationship options of the acculturation framework (integration, assimilation, segregation, and marginalization) would be differentiated by the three dimensions measured by the Moos social climate scales (relationship, personal growth, and system maintenance). Second, more specifically, it was predicted that affirmative resolution related to Issue 2 (positive relations with the culture indicated by assimilation and integration) would be reflected in higher scores on the relationship and personal growth dimensions of the Moos scales. Third, again specifically, it was predicted that negative resolution related to Issue 2 (negative relationship with the culture indicated by segregation and marginalization) would be reflected in higher scores on the system maintenance dimension of the Moos scale. a. Procedure. i. Research Participants. Direct care staff (n = 198) were the research participants for study 2. The staff worked in 22 residential environments at Ongwanada, Kingston, Ontario. Ongwanada is an organization in eastern Ontario providing different types of residential support to persons with developmental disabilities that, at the time of study 2, was in the process of deinstitutionalizing. The research was approved through the organizational research committee. Residential supervisors agreed to distribute the research surveys individually to their staff. There was a 60% return rate of questionnaires, representing staff responses from 18 of the 22 residential environments. ii. Measures. Materials used in this research were compiled as a survey package consisting of four separate questionnaires: (1) AIMS (assimilation,

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integration, marginalization, and segregation), a choice of four statements reflecting the options in the acculturation framework; (2) demographics questionnaire, 10 questions derived specifically from the meta-analytic literature review, which consisted of questions related to client’s level of disability, age, ratio of men to women, manner of selection for the residence, urban or rural location, residence description, preparation for the move, and staff/client ratio; (3) Moos social climate scales, 40 true-false questions dealing with the social climate of that residential environment, Ward Atmosphere Scale (WAS; Moos, 1998b), for institutional environments, and Community-Oriented Program Environment Scale (COPES; Moos, 1998a) for community homes; and (4) consent form, study information page, and return envelopes. b. Results. To investigate the first hypothesis that the four relationship options of the acculturation framework (integration, assimilation, segregation, and marginalization) would be differentiated by the three dimensions measured by the Moos social climate scales (relationship, personal growth, system maintenance), a discriminant function analysis used the three environmental dimension variables as predictors of type of acculturation relationship to determine if the dimensions of the Moos scales did indeed distinguish the acculturation categories. The predictors were therefore, relationship, personal growth, and system maintenance dimensions. One discriminant function (the linear mathematical combination of predictors that separates various groups from each other) was calculated with a
2 (9) = 72.29, p < .01. This function, named the acculturation factor for purposes of discussion, accounted for 94% of the between-group variance. With respect to the second hypothesis, environments in the categories integration or assimilation were predicted to have higher scores on the relationship and personal growth dimensions. The third hypothesis was, in contrast, environments in the segregation or marginalization category were predicted to have higher system maintenance dimension scores. A one-way MANOVA (Moos dimension score by acculturation category) investigated these questions. The multivariate (Table V) and univariate (Table VI)

TABLE V Multivariate Test Statistics Statistic Wilks’  F statistic

Value 0.47 9.27

df

p

9,231

<.01

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integration as acculturation TABLE VI Univariate Results Variable

SS

df

MS

F

p

Relationship Error Personal growth Error System maintenance Error

1830.34 9127.90 2473.11 2629.07 519.68 5507.98

3 97 3 97 3 97

610.11 94.10 824.37 27.10 173.23 56.78

6.48

<.01

30.42

<.01

3.05

<.05

statistics are presented here. The actual means for the categories are represented in Fig. 1. The significant multivariate statistics (Table V) were consistent in providing criteria that showed that the combined dimension scores differed by the acculturation category. Statistics indicated that the combined dimensions were significantly affected by the acculturation category ( p < . 01). Using Wilks’  (2 ¼ 1  ) to determine the strength of association, there was an association between acculturation category and the combined dependent variables (2 = .53). This multivariate result indicates that, with the combination of environmental dimensions, 53% of the variance is accounted for by designating the acculturation category. This association duplicated the discriminant function results discussed previously and justified looking at the univariate results (Table VI) to decide if the hypotheses regarding the pattern of Moos dimensions were supported.

100 80 60

62

57

55 48

45 46

40

50

50 40 43

38 41

20 0 ASSIMILATED

INTEGRATED MARGINALIZED Social Climate Dimensions

Relationship

Personal Growth

SEGREGATED

System Maintenance

FIG. 1. Three dimensions by acculturation outcome.

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i. Relationship Dimension. The prediction that relationship dimension scores would be higher in both integrated and assimilated environments was confirmed and there was a significant effect for relationship [F (3,97) = 6.48, p < .01]. In this dimension, scores were higher for relationship in the assimilated/integrated environment categories. The relationship dimension distinguished between assimilated/integrated environments and segregated/ marginalized environments (pairwise comparisons, Bonferroni adjustment, p < .05). There was virtually no difference in the segregated/marginalized environment categories. The relationship results (first bar of each set) are represented in Fig. 1. ii. Personal Growth Dimension. The prediction that personal growth scores would be higher in both integrated and assimilated environments was confirmed and there was a significant effect for the personal growth dimension [F (3,97) = 30.42, p < .01]. Scores in the personal growth dimension (second bar of each set, Fig. 1) were higher in the assimilated/integrated categories of environment than in the segregated/marginalized categories (Bonferroni adjustment, p < .01). The personal growth dimension also distinguished assimilated from integrated environments (pairwise comparisons, Bonferroni adjustment, p < .01). iii. System Maintenance Dimension. It was predicted that system maintenance scores would be higher in segregated and marginalized environments. There was a significant effect for system maintenance [F (3,97) = 3.05, p < .05], but the results were in the opposite direction. The system maintenance dimension differentiated the marginalized environment with a lower score, not the segregated and marginalized environments with a higher score. The system maintenance results are presented in Fig. 1 (third bar in each set), which illustrates the three dimensions jointly. Results of these analyses partly supported the predictions (Fig. 1), that is, two of the three hypotheses were confirmed. The assimilated and integrated categories showed the predicted pattern for the relationship and personal growth dimensions. The latter dimension, personal growth, also distinguished the two acculturation relationships within a positive acculturation relationship (i.e., Issue 2 in the adapted acculturation framework). The contrary result involved the system maintenance dimension, which did not confirm the hypothesis, although this dimension did distinguish the acculturation categories. It is also interesting to look at the pattern of acculturation categories found in this research illustrated in Table VII. The pattern of acculturation categories found in the literature review (Table III) is repeated in the actual service delivery outcomes. The majority of outcomes are a positive resolution to Issue 1 (i.e., the outcomes recognize the supports required for persons with disabilities). The majority of outcomes are negative

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integration as acculturation TABLE VII Adapted Framework Applied to Actual Deinstitutionalization Outcome Issue 1: Is it considered valuable to recognize and support the unique characteristics of persons with developmental disability? Issue 2: Is it considered valuable for persons with developmental disability to maintain relationships with other groups?

Yes

No

a

Yes Integration 29%: The people who live here are speciallya involved in general community activities Segregation 41%: There are separate community events for the people who live here

No Assimilation 12%: The people who live here are involved like everyone else in general community activities Marginalization 18%: The people who live here are mostly involved in activities within their own home

‘‘Specially’’ would now be described as ‘‘with support’’ for the involvement.

resolution to Issue 2, where there is not a great deal of contact with other groups. Again, this is not the intended outcome of deinstitutionalization service delivery as predicted or envisioned by the application of the principle of normalization. F.

Implications

The acculturation framework provides the theoretical perspective (Bruininks, 1990; Menolascino & Stark, 1990) from which to tailor service delivery in the move to community that is now taking place in the field of developmental disabilities. The acculturation framework was adapted to the deinstitutionalization of people with developmental disabilities, based on three premises. The implications derived from the results can be related to these premises. PREMISE 1: UNIQUE CHARACTERISTICS

The first premise that the unique culture of the smaller group can be redefined as the unique characteristics of persons with developmental disabilities was supported. Service delivery implications for meeting the needs of people with developmental disabilities require identifying these unique characteristics accurately. The individual factors often used in

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outcome research and criticized in the present work as being inappropriate outcome measures (such as adaptive behavior, intellectual functioning, behavior, and social skill variables) and the commonly used demographic variables (such as developmental disability, psychiatric disability, physical disability, age, and gender) can all be used to define uniqueness. PREMISE 2: SUPPORTING UNIQUE CHARACTERISTICS

The second premise, that of maintaining cultural identity by recognizing and supporting unique characteristics, distinguishes the need to address these unique characteristics. In service delivery jargon, this would translate into providing the supports required for these unique characteristics. One source contributing to the potential definition of required supports and services can be derived from the environmental information emerging from this research. If aspects of the Moos relationship and personal growth dimensions are addressed directly, they could influence service delivery positively. By measuring environments, it should be possible to isolate which facets of which dimensions are needed to contribute to the success of that environmental setting. Empirical data suggest that a service delivery emphasis on personal growth and relationship could enhance acceptance within the community at large. This could be accomplished through supports for identified needs (integration) or skill building (assimilation), whichever seems relevant. Both Sinson (1994) and Lord and Pedlar (1991) provide accounts of community integration that highlight such support services and a context for building skills. Additionally, looking at the possibility of both supporting needs and building skills according to the unique characteristics of the individual provides a means for applying the definitions of mental retardation (AAMR, 1992, 2002) as it relates to the concept of intensity of supports. Bronfenbrenner’s (1977) levels of developmental environments can also help in the identification of required supports. As the range of roles and environments expands for an individual, Bronfenbrenner’s developmental psychology provides an expanding realm of life span environments that simplifies role definition and environmental interactions. Bronfenbrenner’s theoretical approach provides the referent for ‘‘age-appropriate’’ services, so common in the description of programs. These expanding environments can determine the service delivery required to assist those receiving the services to expand their roles from patient to the many other relevant, age-appropriate, participatory roles (Buell, 1990). In conjunction with Bronfenbrenner’s theoretical description, the Moos personal growth dimension stresses environmental aspects that foster individual role development, whereas the relationship dimension helps in defining interrelations among settings.

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PREMISE 3: MAINTAINING CULTURAL RELATIONSHIPS

a. From the Perspective of the Smaller Group. The third premise, that the cultural relationship is defined by service delivery (Issue 2), which defines service delivery outcome, has the most useful implications. The aim of policy (deinstitutionalization) derived explicitly from the adapted acculturation framework can be stated in terms of the extent to which supports are provided through the larger society. It is possible that some aspects of service delivery are independent of the ongoing societal relationship and that, due to unique needs, segregated or specific services are required. There may be identified needs that require segregated service delivery due to the specificity of the uniqueness. If it is explicit that the supports will be given within the context of positive acculturation relationships, then service delivery efforts can be delivered in an integrated way. The service delivery challenge is to identify unique needs accurately and to meet them without ‘‘segregating’’ the entire individual. For example, the person with Down syndrome who develops Alzheimer’s dementia requires specialized services, perhaps even segregated, but in the same segregated fashion as any member of the general society. b. Service Delivery and Issue 2. Given the results of statistical analyses, service delivery can be directed appropriately. With both predictors, relationship and personal growth dimensions, there was a separation between assimilated and integrated versus segregated and marginalized categories. This coincides with the second issue of the acculturation framework, as illustrated in Table VIII. Environments high in these two dimensions were consistent with affirmative resolution to Issue 2. Assuming the major change in treatment policy has been to close institutions and to include people with developmental disabilities within the larger societal context, perhaps the resolution to Issue 1 is not important. The major emphasis for successful service delivery outcome may be to concentrate on changing the various approaches and perceptions to an affirmative resolution to Issue 2. This approach gives theoretical substance to the support emphasis of the AAMR’s diagnostic criteria. If the required supports for uniqueness are given, then the effort can be directed at fostering ongoing relationships with the larger culture. An alternative interpretation of Issue 2 arises from the original framework (Berry, 1984, 1993), discussed earlier, in which the empowerment of the smaller group in deciding their relationship with the larger group distinguished separation (i.e., the group has the power to decide) from segregation (i.e., the group does not have the power to decide). The assumption in adapting the framework, evident in the preceding discussion, has been that service delivery is provided because of the presumed

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M. Katherine Buell TABLE VIII Adapted Acculturation Framework Highlighting the Two Defining Issues Issue 1: Is it considered valuable to recognize and support the unique characteristics of persons with developmental disability?

Issue 2: Is it considered valuable for persons with developmental disability to maintain relationships with other groups?

Yes No

Yes Integration

No Assimilation

Segregation (powerless) Separation (powerful)

Marginalization

‘‘powerlessness’’ of the people involved. This may be a damaging assumption resulting in the outcome of segregation. However, direct and indirect efforts at empowering persons with developmental disabilities would allow for the option of separation. In fact, there is a growing self- advocacy movement within the field of developmental disabilities, as evidenced by the growth of People First and by the establishment at the 1994 annual conference of the AAMR of a formal consumer/self-advocate section to advise the board. The idea of service providers empowering people has the intriguing outcome of providing a rationale for meeting the unique needs of persons with developmental disabilities in a nonsegregated or separated manner. The fostering of ongoing relationships with the larger culture is evident in Wolfensberger’s (1983) reformulation of normalization. In clarifying some of the confusion around the term normalization, he introduced the term ‘‘social role valorization’’ (Wolfensberger, 1983, p. 237). To meet the goals of social role valorization, Wolfensberger claimed that service delivery must be directed by two general classes of activities: the enhancement of social image in the perceptions of others and the enhancement of people’s competencies. In this clarification, Wolfensberger stressed two aspects also deemed important in the present work. He identified physical settings (environment in the present work) and relationships (measured in the environment) as means for contributing to the goal of social integration. Results of the present work supported his emphasis in that an environment that encouraged personal growth and relationships was more likely to have an integrated/assimilated outcome. However, Wolfensberger continued to stress that the strategy was ‘‘to reduce or prevent the differentness . . . which make a person devalued in the eyes of observers’’ (Wolfensberger, 1983,

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p. 235). In the present work, it was precisely the emphasis on minimizing differences (reduce or prevent differences) that proved to be untenable. In examining service delivery from the acculturation perspective, data presented here indicate that the majority of options postinstitutionalization do indeed recognize differentness (integration or segregation ratings related to Issue 1). Service delivery around community living needs to address the unique needs of the people involved while continuing to expect participation in the larger community (Issue 2). By evaluating outcome, with consideration given to the acculturation framework, service delivery can address the issues presented by the framework. It would appear that service delivery that continues to be based solely on the idea of normalization, as was done initially, or social role valorization, as is done currently, without attention to evaluating outcome will continue to create controversy (Chappell, 1992; Elks, 1994) by continuing to confuse the valuable theoretical intent of normalization with the actual practical application of normalization. Examples of how to apply results of the adapted acculturation framework are the focus of the second part of this Chapter. Results reported here support the use of the adapted acculturation framework to facilitate the definition of outcome based on the two issues. Service delivery success could then be judged based on decisions about these two issues. As illustrated earlier, the adapted acculturation framework could also provide a basis for directing supports for the unique needs of the population and suggests ways to intervene to foster acculturation. A policy decision about one or both issues could direct service delivery more precisely. With the growing emphasis on quality assurance and accountability in service delivery, the adapted acculturation framework can direct service delivery to persons with developmental disabilities and assist in the evaluation of the effectiveness of community-based services.

II.

A PRACTICE EXAMPLE APPLYING INTEGRATION AS ACCULTURATION

One of the major issues related to the process of deinstitutionalisation has been the issue of outcome evaluation. Without a proper method for evaluating outcome, service delivery efforts cannot be assessed and improved to meet the needs of the consumers. In the preceding pages, the theoretical basis for assessing outcome was proposed. The framework was operationalized by incorporating a number of theoretical perspectives: the principle of normalization, developmental relevance, environmental factors, and acculturation. The synthesis of these perspectives provided the hypotheses to evaluate three explicit premises: persons with developmental

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disability are their own cultural group; the unique characteristics of this group are useful in defining supports; and service delivery directions foster involvement with the larger culture. The following section illustrates implications of the acculturation perspective. The examples demonstrate how the premises underlying the development of the instrument can be used in practice to describe service delivery outcome and prescribe service delivery changes. To bridge the gap between research and practice, the process for developing the ‘‘tool’’ is discussed. A.

Development of the AIMS-C

The purpose of the following section is to describe briefly the steps involved in developing the acculturation perspective as discussed earlier into the checklist that is now known as AIMS-C ( version) (see the Appendix). First, the research presented in this chapter to investigate the adapted acculturation framework was based on a simple statement reflecting each of four acculturation options. This simple checklist was used as part of the applied study, where one of four statements regarding service delivery was selected. For the purposes of that study, the checklist was named ‘‘AIMS,’’ an acronym of the four acculturation options represented by the framework. As discussed, data were collected from staff informants in both institutional and community settings about the clients with developmental disability who were living in those environments. As described, statistically, the four options were distinguished based on what was named ‘‘an acculturation factor.’’ Second and subsequently, Minnes and Buell (1995) expanded this original single-statement checklist to include statements reflecting the four acculturation options for each of the areas of inclusion identified as important by the Ministry of Community and Social Services in Ontario (MCSS, 1987).3 The areas included medical services (access to a family physician), dental services (access to a regular dentist), specialty medical services (access to a medical specialist if required), education opportunities, employment opportunities, social activities, housing renovations and accommodations, and spiritual needs. The original statement (community involvement) was retained, and the category volunteer opportunities was added. The latter category was added because volunteering appeared to be a good opportunity for community participation and it had not been assessed or identified. Thus, the single statement was expanded to cover 10 categories of community participation. Data were collected from community residences, with staff as informants completing the revised checklist about clients with 3

Now referred to as Ministry of Community, Family and Children’s Services.

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developmental disability. Discriminant function results (construct validity) replicated the original findings. There was a single discriminant function that accounted for 87% of the variability among the four acculturation options, which again was referred to as the ‘‘acculturation factor’’ (Minnes & Buell, 1995). In addition, the scoring profile was developed. A WORD ABOUT VOLUNTEERING

In the replication study, the incidence of volunteering was so low that this category was dropped from the checklist. Additionally, volunteering was not identified by MCSS, and therefore was not included in the checklist used at the time (1996) when data described later were collected. However, volunteering has been returned to the AIMS-C () because it is an avenue for community participation that can be evaluated on an individual profile basis. Third and finally, further research developing an interview format of the AIMS has informed the checklist statements since the quality of life data collection (Buell, 1998; Minnes, Buell, Feldman, McCreary, & McColl, 1999; Minnes, Buell, Feldman, McColl, & McCreary, 1999). The AIMS-C () is reprinted for reference in the Appendix. The AIMS-C () is not that used exactly in 1996 in that it includes the category volunteering. Additionally, feedback (both related to use and based on the interview version) on the scale since 1996 has resulted in the clarification of statements. The AIMS-C () provided in the Appendix is referred to as ‘‘’’ in order for potential users to adapt to their needs. B.

Quality of Life Project: Phase III

In Ontario, current government policy directions emphasize the phased closure of large institutions and also encourage the integration of adults with developmental disability into their communities. Thus, integration was becoming an increasingly important issue for both researchers and service providers in the province. An associated challenge for both researchers and service providers was how to assess the degree to which adults with developmental disabilities were being integrated into their communities. The AIMS and the acculturation framework on which it is based provided a systematic approach to addressing this challenge in Ontario. The quality of life project was an Ontario-wide, cross-sectional and longitudinal study of the lives of adults with developmental disability, which was conducted over a 4.5-year period (1994 –1998). At phase I begun in 1994 (cross-sectional study), 504 adults, aged 18 years and over, were selected by proportionate random sampling according to geographic area (Buell & Brown, 2000).

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Of these participants, a subsample was also assessed in the longitudinal portion of the study at phase II in 1995 and at phase III in 1996. This section highlights the 1996 phase III results concerning their community integration, as assessed by the AIMS-C available at that time (Renwick, Mackenzie, & Buell, 2000). The AIMS-C was administered as part of the personal information questionnaire (PIQ) and quality of life profile (QOLP), both of which were developed for use in the Ontario-wide study (Renwick & Brown, 1996). Informants for 200 Ontario adults with developmental disabilities who received services from the Ministry of Community and Social Services completed the checklist at phase III. Further information on this research project can be found in Brown, Raphael, and Renwick (1997).

C.

Results of AIMS Checklist

Results of the AIMS-C are presented in Tables IX–XII. The profiles are grouped by the category of living environment as identified in the quality of life study (phase III). These results show the pattern of acculturation associated with the different types of living environments (large congregate care, small congregate care, family living, independent living). These profiles provide an example of how different service delivery outcomes can be interpreted. These profiles (e.g., Table IX) can be used to illustrate the current situation and to direct efforts to enhance the community participation of people with developmental disability. These profile examples based on quality of life results will be used to illustrate the

a

Percentage in each acculturation category.

9 65 0 26

56 22 0 22

0 45 4 36 17

Community Involvement

0 35 0 22 43

Spiritual

4 4 0 0 91

Housing

4 9 0 17 70

Social

Employment

4 9 78 9

Education

9 35 48 9

Specialty

Dental

Integrated Segregated Assimilated Marginalized Not applicable

Medical

TABLE IX People Living in Large Congregate Care (N = 23)a

4 0 4 91

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a

34 34 14 17

29 10 28 33

3 8 30 29 30

Community Involvement

3 34 1 15 47

Spiritual

1 3 1 4 89

Housing

26 24 0 7 43

Social

Employment

11 7 75 7

Education

18 14 68 0

Specialty

Dental

Integrated Segregated Assimilated Marginalized Not applicable

Medical

TABLE X People Living in Small Congregate Care (N = 95)a

34 20 23 23

Percentage in each acculturation category.

application of the acculturation approach. The conclusions and recommendations are simply illustrative. In each of Tables IX, X, XI, and XII, the category of community participation (column) with the largest percentages is in bold. Only the categories specialty medical, education, vocation, and spiritual can be given a ‘‘not applicable’’ rating. Category columns summing to more than 100% reflect rounding inaccuracies. The row pattern illustrates the acculturation options, or acculturation profile. Throughout the discussion, the terms (assimilation, integration, marginalization, and segregation) used to describe the results have definitions derived from the two issues posed in the adapted acculturation framework. For interpretation, the definition is given after each term used for the result.

a

Percentage in each acculturation category.

11 46 23 19

0 33 33 33

0 4 48 22 26

Community Involvement

0 26 4 16 54

Spiritual

0 7 0 0 93

Housing

32 7 0 4 57

Social

Employment

11 4 82 4

Education

27 11 61 0

Specialty

Dental

Integrated Segregated Assimilated Marginalized Not applicable

Medical

TABLE XI People Living with Family (N = 28)a

22 18 15 44

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8 36 38 19

6 0 28 67

0 4 34 23 40

Community Involvement

6 24 14 22 34

Spiritual

2 0 8 4 86

Housing

23 15 0 4 58

Social

Employment

4 4 81 11

Education

17 9 74 0

Specialty

Dental

Integrated Segregated Assimilated Marginalized Not applicable

Medical

TABLE XII People Living Independently (N = 54)

21 17 53 9

1. PEOPLE LIVING IN LARGE CONGREGATE CARE

Large congregate care (LCC) settings refer mostly to government-run facilities, but they also include facilities run by independent boards and other large residences of more than 10 people (Brown et al., 1997). The AIMS-C was developed to assess being ‘‘in the community’’ and therefore does not correspond theoretically to this type of living situation. This bias can be seen particularly in the housing category, discussed later. However, LCC environments provide meaningful illustrations of the interpretive issues in the AIMS-C. The AIMS-C profile for people living in LCC is illustrated in Table IX. The AIMS-C profile of people living in LCC has the following interpretative implications. The unique characteristics of people living in LCC are recognized explicitly (by the service providers) by virtue of their living in these aggregate environments. The implicit assumption made by providers of these residential services is that these unique characteristics require this type of residential support (Issue 1). The service delivery questions that need to be addressed become ‘‘Do the unique needs require support in this way?’’ (Issue 1) or ‘‘Does the society not value their participation within the larger community?’’ (Issue 2). From the perspective of the culture at large, it is highly unlikely that in our current climate of political correctness that any member of the larger culture would answer the latter question affirmatively; however, attitudes and behavior can likely provide the answer. From the perspective of the service provider, the questions challenge providers to define their mandate and have explicit policy statements regarding service delivery. From a government point of view, these questions illustrate the discrepancy between legislation and

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implementation. Questions generated by the LCC profile resonate at the heart of the issue of inclusion of persons with disability, and the acculturation profiles can indicate where efforts to enhance community participation can be directed effectively. For the categories medical and dental, the majority of ratings were assimilated (i.e., based on the issues in the framework, their unique characteristics are neither identified explicitly nor supported as part of community participation). An interpretation of this result is that despite where they live, services are received from community physicians and dentists, independent of their unique characteristics. A recommendation related to this finding would consist of ensuring that special arrangements were made to support the unique characteristics (e.g., someone accompanies the person, transportation is provided, extra time is given, waiting rooms are not crowded). For the social and spiritual service provision categories, the majority of ratings were segregated (i.e., their unique characteristics were identified and supported without community participation). Using the issues in the framework that define the segregated category, it can be assumed that the unique needs related to social and spiritual activities were being supported within the LCC. There is a philosophical issue that requires discussion when making recommendations related to this result. For service providers, the question becomes whether meeting the needs is the priority or whether the community participation aspect takes precedence. Assuming that community participation is a goal, recommendations would be made that identify means for shifting the resolution of Issue 2 from ‘‘negative’’ to ‘‘affirmative,’’ that is, looking at ways that the supports provided to the congregate group could be transferred to the community (e.g., defining individualized supports and developing public acceptance through education and participation). For the service provision category housing, the majority of ratings were integrated; i.e., the unique characteristics of the residents are identified and supported with community participation. This result reflects the emphasis in the housing category on structural accommodations and that this accommodation occurs in the community. The majority of people have had the necessary structural adjustments made to enable them to live in that setting. The AIMS-C is biased toward noncongregate settings. Service providers have to determine their own philosophical bias related to such issues, either emphasizing the importance of housing that has the structural modifications required to meet the unique needs of the people living there (Issue 1) or emphasizing where the housing is located (Issue 2). For the category community involvement, the majority of ratings were marginalized, (i.e., the unique characteristics were neither identified nor

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supported and were without community participation). Community involvement is the category that most generally addresses acculturation or community participation. This result presents significant challenges to the provision of services for people with developmental disability under the unmet emphasis on community participation. Recommendations would have to look at questions related to both Issues 1 and 2: why is community involvement not addressed as a priority? What are the unique characteristics that are hindering community involvement? Why are the supports not available? What supports are required? What can be done to overcome community attitudes and behavior? Finding solutions to barriers to participation can begin to increase community involvement. The majority of ratings for the categories education and employment were not applicable. These ‘‘not applicable’’ results can reflect either a lack of interest or a lack of involvement. In some circumstances, these ratings can be interpreted as marginalized depending on whether the activity is actually available and whether true decision making exists on the person’s part concerning participation. If marginalization is the case, then the issues can be resolved in a similar manner to community involvement. For these categories (education and employment), the service providers have an obligation to make the distinction between availability and true opportunity for decision making or lack of effort at providing opportunities that meet the needs of the individuals. Volunteering presents similar questions and, as mentioned earlier, has been reinserted into the checklist. Not applicable ratings should suggest that the lack of opportunity be investigated and challenged. The majority of ratings for the special medical category were not applicable. This result raises some interesting questions: (1) does the not applicable rating reflect a lack of medical problems that required specialized attention, or (2) are there specialized medical concerns that have gone unidentified (and thus untreated) due to diagnostic overshadowing (Reiss & Szyszko, 1983)? These questions have to be answered because if the not applicable is related to the second question, then the rating would be marginalized. In contrast to the other categories, the acculturation level that is given the most weight is the segregated option. The definition within the adapted acculturation framework of a specialized medical service is consistent with segregation, where unique medical needs are identified and addressed in a group with similar needs not in the general society. The diagnostic overshadowing issue is not trivial and specialty medical services were included to provide an opportunity for addressing extraordinary medical issues that might otherwise be overlooked. This is particularly important with using the AIMS-C () with an individual rather than with a service delivery agency, as is being discussed. Interpretation of the results of the people in a LCC environment illustrated the application of some of the AIMS-C approach. Next, the

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profiles of three other living environments are discussed to offer examples of additional interpretive considerations.

2. PEOPLE LIVING IN SMALL CONGREGATE CARE

Small congregate care (SCC) settings refer to community homes or other small living units of up to 10 people that are staffed and run by community agencies or facilities (Brown et al., 1997). The profile for people living in SCC in Table X is surprisingly similar to those people living in LCC. For the categories medical and dental, the majority of ratings were assimilated, and for specialty medical, education, and employment the majority of ratings were not applicable. Except for specialty medical, where more people were rated as receiving medical care for specialty reasons, the percentages of acculturation options are quite close. An aspect of the profile that has yet to be discussed concerns distribution of the percentages within a service category (or column distribution). This distribution of acculturation options within a service category has the potential to be used by service delivery agents to evaluate whether the services provided are within acceptable limits of their mandate or philosophy. For example, by using the demographics of the people who comprise each of the options within the service category, the unique characteristics or needs of the people receiving service can become clearer. Once the patterns are described, supports can be determined and implemented. For the social category, the majority of ratings were either integrated or segregated. Both these ratings indicate that the unique needs of the people involved are being identified and supported: the difference relates to the degree of community participation. Deciding which issue is more important, either identifying and supporting unique characteristics (Issue 1) or community participation (Issue 2), will dictate what, if any, action should be taken by the service provider. For the housing category, the majority of ratings among the four options were rated as marginalized, but were also fairly evenly distributed among the integrated, assimilated, and marginalized options. Because the housing category primarily addresses structural accommodations, ratings that indicate types of unmet (unsupported) needs are made apparent (e.g., ramps, grab bars) by the option. Theoretically, of the three rated options, only the integrated option is indicated as supporting the unique characteristics of those people living in that environment. Therefore, using the profile, recommendations would relate to assessing whether there are indeed unidentified and unsupported needs in the assimilated and marginalized housing category as reflected by the ratings.

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For the community involvement category, the majority of ratings among the four options were integrated, in contrast to the LCC profile. Again, as with housing, there is a fairly equal distribution among the four ratings. People in the marginalized group would be the focus of recommendations. For the spiritual category, the majority of ratings were either assimilated or not applicable. The spiritual category reflects attendance at a church or other religious service rather than the more personal sense of spirituality. The ratings present a number of service delivery hypotheses. Not applicable may reflect the secularization of society, it may reflect a lack of opportunity to attend, or it can indicate the lack of informed choice about attendance. Each of these considerations would have to be investigated. Further, results for this category suggest that for this sample of people, Issue 1 (Is it considered valuable to recognize and support the unique characteristics of persons with a developmental disability?) does not take precedence because of the low percentages rated as integrated and segregated. In contrast, ratings do suggest that Issue 2 is important (Is it considered valuable for persons with developmental disabilities to maintain relationships with other groups?) because one of the highest percentages is rated for assimilation. The community location of the church service favors an affirmative resolution to Issue 2.

3. PEOPLE LIVING WITH FAMILY

The living with family category included people who resided with their own biological families, foster families, or other families (Brown et al., 1997). The AIMS-C profile of people living with family is presented in Table XI. These results present a different profile from the previous two examples and are discussed in reference to these differences. For the category social, the majority of ratings were segregated. Families tend to report social activities for the person with developmental disability as segregated, (i.e., unique characteristics were identified and supported to address social issues, with a lack of community participation). Clinical experience can inform this finding, in that often social activity is done within the family. In terms of this sample, this lack of community participation is echoed in the community involvement category, where the majority of ratings were marginalized. These two findings suggest the need to explore aspects of service delivery related to Issue 2, determining what are the impediments to community participation.

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4. PEOPLE LIVING INDEPENDENTLY

People living independently were living in residences that were not directly controlled by community agencies or families. The setting was considered to be the ‘‘home’’ of the person, no matter how much support they may have required to maintain independent living (Brown et al., 1997). Utilizing the framework, the definition of this home environment implies an emphasis on Issue 1 (no matter how much support). The profile can be used to test hypotheses about the acculturation of these people. The AIMS-C profile would be predicted to have the majority of ratings in the integrated and segregated options if support for unique characteristics is the paramount issue. Alternatively, if maintaining a home in the community (contact with other groups) is the paramount emphasis, the majority of ratings would predictably be in the integrated and assimilated options. Results (Table XII) in the profile can be used to explore the predictions. Results indicate that four of nine areas have the highest percentage of people rated as assimilated. If the service categories with not applicable ratings are removed, then four of five service categories (medical, dental, social, and community involvement) have people rated as assimilated. Recall the definition of assimilated (i.e., based on issues in the framework, the person’s unique characteristics are neither identified explicitly nor supported as part of community participation). Based on the predictions discussed earlier, due to the overall assimilated ratings, it would appear that being in the community (or community participation) is the primary emphasis. Another rather surprising result is that for the housing category, the majority of ratings were marginalized. This finding may reflect issues related to any of the following questions: Does the lack of formal involvement by agencies or families lead to less support of unique needs, especially for housing? Are the ratings marginalized because the physical accommodations are not available? Are the social service policies inadequate, that is, providing minimal housing? Does the overall pattern of assimilation suggest that the actual supports are implicit and present rather than implicit and absent? How valid are the informants’ opinions related to the person’s situation? Results of the quality of life project (phase III) reported here illustrated the use of the adapted acculturation framework. The framework was quantified into a checklist instrument, the AIMS-C. Theoretical discussions of the examples illustrated how to interpret outcomes using the two issues. Evaluating service delivery success can be based on hypotheses about these

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two issues. As illustrated, the adapted acculturation framework can also provide direction for determining supports for the unique needs of the population and suggest ways to intervene to foster acculturation. The adapted acculturation framework can direct service delivery to persons with developmental disabilities and assist in the evaluation of the effectiveness of community-based services. The same interpretive process used on aggregate classes of data (i.e., the environmental groupings illustrated here) can be used on individual AIMS-C () profiles to enhance specific supports to individual characteristics to foster living as part of the community.

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AIMS-C () This version of the AIMS is the actual form for use and can be distributed to informants. AIMS INSTRUCTIONS: Please select the statement from within each of the categories that most accurately reflects the situation of the person with a disability or people with disabilities living with you or where you work. Each category describes a life situation in which there can be slightly differing levels of involvement depending on a person’s disability. Read each statement carefully and then select the one that best describes the situation you are in. Select only one, the one that most accurately describes the situation or the one that is most true of the person or people you provide care for. Access to Medical Services __________ The person who has medical needs sees a special physician. __________ The person who has medical needs has help to visit their family physician. __________ The person only visits a physician for an emergency. __________ The person visits their family physician when they have medical needs. Access to Dental Services __________ The person who has dental needs has help to visit their family dentist. __________ The person sees the family dentist when they have dental needs. __________ The person only sees a dentist in an emergency. __________ The person has dental needs and sees a special dentist. Access to Specialty Medical Services (Examples: urology, gynecology, neurology, orthopedic, psychiatry, cardiology, etc.) __________ The person who has additional medical needs that require a specialist sees a physician in an emergency, in a hospital or facility only. __________

The person who has additional medical needs that require a specialist sees that specialist in a hospital or facility or office.

__________

The person who has additional medical needs that require a specialist sees a family physician in their community office.

__________

The person does not have any additional medical needs that require a specialist.

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Educational Needs This can refer to interest classes if the person is an adult or schooling if the person is a child. __________ The person has educational needs met by the teacher in the classroom. __________ The person has special educational needs and has an aide or a teacher who provides individual instruction. __________ The person has special educational needs met by an aide and the teacher in the classroom. __________ The person has educational needs unmet in the classroom. __________ The person is not involved in any educational activities. Vocational/Work Needs __________ The person works with other people with disabilities at a supported job that does not pay minimum wage. __________ The person works at a supported job that pays at least minimum wage within the community. __________ The person is currently unemployed. __________ The person works at a job that pays at least minimum wage in the community. __________ The person is not interested in working, or is a child. Social/Recreational Activities __________ The person participates in social/recreational activities provided by and at an organization for persons with disabilities. __________ The person participates in very few social/recreational activities. __________ The person participates in social/recreational activities within the general community. __________

The person participates with support by an organization for persons with disabilities in social/recreational activities in the general community.

Housing and the Physical Structure __________ The person had specially constructed adjustments made to the house and lives with more than three other people. __________ The person lives here because it is the only available housing. __________ The person lives in this house in order to live in the community. __________ The person had specially constructed adjustments made to the house in order to live here or was considered for the house because of existing specially constructed adjustments.

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Spiritual Needs __________ The person attends a community church of his/her religion. __________ The person is supported by a volunteer or church member to attend a community church of his/her religion. __________ The person attends a special church service with other people with disabilities. __________ The person does not attend a church service. __________ The person is not interested in attending church. Volunteer Activities __________ The person volunteers with other people with disabilities at a supported placement. __________ The person volunteers at a place with support within the community. __________ The person is currently not volunteering. __________ The person volunteers at a place in the community. __________ The person is not interested in volunteering. Involvement with Community __________ The person is involved in general community activities. The person is involved in activities available to the general public. __________ The person is specially involved in general community activities. Their involvement in these activities is supported by an organization for persons with disabilities. __________ The person is involved in separate community activities, which are provided by an organization for persons with disabilities. __________ The person is involved mostly in activities within their home/ residence.

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M. Katherine Buell AIMS SCORING

+ This is not to be distributed to informants. It is to be completed by assessor. ID#: ___________ or Agency: Information collected from:

_____________________________________

_________________________________________

Relationship to Identified Individual: __________________________________ Date of completion: Date of scoring:

_______________________________________________

__________________________________________________

Information about the Identified Person Age: _____ Gender:

Years: ______ Months: ______ Date of Birth: ______________ Female o

Male o

Level of Developmental Disability:

Other Disorders:

o o o o

Mild Moderate Severe/Profound Borderline Intellectual Functioning

Physical:

Specify: ________________________________

Medical:

Specify: ________________________________

Psychiatric:

Specify: ________________________________

Medications: ________________________________ ________________________________ ________________________________ Other:

Specify: ________________________________

Describe the Living Arrangements: _________________________________________________________________ _________________________________________________________________ Please indicate any other information that you think is important.

AIMS SCORING

+ This is not to be distributed to informants. It is to be scored by trained staff. Abbreviated Directions: The order in the questionnaire coincides with the order in the table. Circle the corresponding answer selected in each of the areas. Carry that number to the end of the column. Sum across the bottom row of columns. A higher total score reflects higher acculturation. The Not Applicable is scored 8 but this score is not included in the total score. The Not Applicable score is for research purposes and is scored 8 for summary purposes. 3 - integration ANS

2 - segregation

1 - assimilation

Specialty Medical Education

0 - marginalization

Vocation Social

Housing

(8) - not applicable

Dental

2

3

0

1

2

2

2

1

2

1

3

1

3*

3

3

0

0

3

3

3

0

0

2*

2

0

1

1

2

0

2

1

2

8

0

1

3

3

0

1

0

8

8

8

8

257

Medical

Spiritual Volunteering Community TOTAL

TOTAL *

This is not a mistake. This item is scored differently from the rest, in that the typical segregated service is rated highly (like integrated).

OPTIONAL for research, useful for clinical use The information above can be transferred to the table below by putting a checkmark in the corresponding box, that is, if 2 is indicated for medical then the row 2 under medical is checked. The resulting profile can be inspected to determine patterns of acculturation. This will determine where either a need remains unidentified, the support is yet to be determined, or ways of being involved in the community need to be investigated.

ANS 3 2 1 0 8 TOTAL

Medical

Dental

Specialty Medical

Education

Vocation

Social

Housing

Spiritual Vocation Community TOTAL

258

M. Katherine Buell ACKNOWLEDGMENTS

Funding for part of this research was provided by the Queen’s University Advisory Research Council. I thank the many people who have been involved over the number of years of developing this approach. I was impressed while writing this chapter by a number of aspects: how many facets of the field of developmental disabilities have changed since the work began in the late 1980s; the number of people involved, giving evidence of how interdependent we all are; interesting aspects of the journey that were left out, all omissions both intentional and unintentional are my responsibility; and the exciting obligation of balancing science with practice. Specifically, my gratitude is expressed toward the agencies that had the courage to be participants and expose their services to outcome evaluation and toward informants who took the time to complete the questionnaires, in the interest of science. I also thank the following people: Dr. Patricia Minnes, Dr. Mary-Lou Nolte, Ms. Lori-Ann Blessing, Ms. Lynn Woodford, Ms. Julie vanDerMulen, and Dr. John Berry, without whom the pieces would never have come together. Here is hoping the pieces that came together can make a whole that makes a difference. I hope that further debate will clarify and improve the supports provided to persons with developmental disabilities by service delivery agents.

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