Definitions Matter in Understanding Social Inclusion

Definitions Matter in UnderstandingSocial Inclusionjppi_316 276..282

Lynn Martin* and Virginie Cobigo†

*Public Health, Lakehead University, Thunder Bay, Ontario, Canada; and †Department of Community Health and Epidemiology,Queen’s University, Kingston, Ontario, Canada

Abstract Social inclusion is an explicit goal of legislation, policies, and supports for persons with intellectual and developmentaldisabilities in many countries. However, evidence outlining the dimensions of social inclusion is still limited. How we understandsocial inclusion defines how it is measured. This study aims to better understand the concept and indicators of social inclusion.Retrospective analyses were conducted on 1,341 adults with intellectual disabilities residing in institutional and community-basedsettings who were assessed with the “interRAI Intellectual Disability” instrument. Objective and subjective items in the instrumentrelated to five domains of social inclusion (i.e., relationships, leisure, productive activities, accommodations, and informal support).The results highlighted the heterogeneity within domains, and by the nature of the indicator. Overall, percentages varied between3.0% and 96.4% depending on which indicator was used; variability also existed in rates achieved using objective and subjectiveindicators. Acceptable-to-good levels of internal consistency were reported for three of the five domains; low correlations were foundto exist between some, but not all, domains. The results of this study demonstrate that without an understanding of what socialinclusion means for both general and vulnerable populations, it is not clear what is being measured, or how it should be measured.A clear definition of inclusion and its measurement is needed for decision-makers and service providers to define the nature of theirresponsibilities, set actions, and assess their effectiveness in achieving inclusion.

Keywords: intellectual disability, interRAI ID, leisure, productive activities, social inclusion, social relationships

INTRODUCTION

Social integration, inclusion, and participation are explicitgoals of legislation, policies, supports, and services for personswith intellectual and developmental disabilities in many coun-tries (Officer & Groce, 2009; Ward & Stewart, 2008). Full andeffective participation and inclusion in society are recognized asa general principle (article 3), a general obligation (article 4),and a right (articles 29 and 30) in the United Nations Conven-tion on the Rights of Persons with Disabilities, which enteredinto force in 2008 (United Nations, 2006). However, evidenceoutlining the dimensions of social integration, inclusion, andparticipation is still limited (Cobigo, Lysaght, & Hamilton, 2010;Cobigo & Stuart, 2010) in spite of several attempts to definethese concepts (Cummins & Lau, 2003; Minnes et al., 2003) andprovide a conceptual framework (e.g., Verdonschot, de Witte,Reichraft, Buntinx, & Curfs, 2009a) or approach (e.g., Terzi,2005). In 1999, Flynn and Aubry highlighted the lack of

consensual understanding of social integration, especially incomparison to physical integration (Flynn & Aubry, 1999).

Although they are based on different theoretical constructsand have their own unique implications for practice, socialintegration, inclusion, and participation currently cannot beclearly differentiated and are still used interchangeably inthe scientific literature and legislations (Lemay, 2006; UnitedNations, 2006). Consequently, this paper uses “social inclusion”as a synonym of social integration and participation while rec-ognizing that these three terms might describe different realities.The lack of a clear understanding means that there is no realway to determine and measure whether service providers aresuccessful in facilitating or achieving inclusion with the personsthat they support (Cobigo & Stuart, 2010). In a global climatewhere funds are limited and resources are scarce, the ability todemonstrate achievement of outcomes becomes all the moreimportant.

Definitions and measures of social integration, inclusion,and participation have been influenced by theoretical perspec-tives on disability and rehabilitation, and thus have changed overtime (Minnes et al., 2003). They have been seen as the counter-part of disability and understood as the result of an increase infunctional independence. Various supports were deemed essen-tial to restore the ability of persons with disabilities to perform

Received March 28, 2011; accepted September 3, 2011Correspondence: Lynn Martin, PhD, Public Health, Lakehead University,955 Oliver Road, Thunder Bay, Ontario P7B 5E1, Canada. Tel:+1 807 766 7245; Fax: +1 807 766 7225; E-mail: [email protected]

Journal of Policy and Practice in Intellectual DisabilitiesVolume 8 Number 4 pp 276–282 December 2011

© 2011 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.

daily life functions. Over the years, perspectives on disabilityhave changed, and other dimensions have been seen as contrib-uting to the experience of social integration, inclusion, and par-ticipation. We now consider that complex interactions betweenpersonal and environmental factors, including social and cul-tural factors, explain an individual’s experience of social inclu-sion. Discrimination, marginalization, and sense of belongingto a community currently add to our understanding. Socialinclusion is also experienced in a variety of social life domains.Verdonschot, de Witte, Reichraft, Buntinx, and Curfs (2009b)proposed four social life domains: (1) domestic life; (2) inter-personal life, including formal and informal relationships,family, and intimate relationships; (3) major life activitiesconsisting of education and remunerative or non-remunerativeemployment; and (4) community, civic, and social life, includingreligion, politics, recreation and leisure, hobbies, socializing,sports, arts, and culture.

Our understanding of social inclusion defines the elementsthat we consider being part of it and relevant to its measure-ment. However, measures taken with instruments representingdifferent perspectives of social inclusion may not correlate, orhave a negative correlation (Minnes et al., 2003). Consequently,they might reflect opposing constructs. Social inclusion is acomplex construct, and its measure must take into account themultiple processes and elements involved to provide a com-prehensive picture of the reality. A review published in 2003(Cummins & Lau, 2003) provides a list of variables frequentlyused to measure social inclusion. It revealed that the most fre-quent measure is the number of activities undertaken within thecommunity. Studies also look at the number or objective char-acter of personal relationships, the frequency of access to thecommunity resources, and the number of leisure activitiesengaged in outside of the home. Less frequently used are mea-sures of subjective well-being. Studies measuring social inclusiontend to be more concerned with objective factors (Cummins &Lau, 2003), and overlook the perspective of persons with intel-lectual disabilities (ID). From a synthesis of qualitative studies(Hall, 2009), six themes emerge as crucial to social inclusionfrom the perspective of persons with disabilities: (1) beingaccepted as an individual beyond the disability; (2) having sig-nificant and reciprocal personal relationships; (3) being involvedin activities; (4) having appropriate living accommodations; (5)having employment; and (6) receiving formal and informal sup-ports. For measures of social inclusion to be meaningful topersons with ID, they should provide information on their sub-jective experience and satisfaction with activities held in varioussocial life contexts.

The goal of this study was to better understand theconcept of social inclusion and the indicators that can be usedto measure it. It broadens the scope of what has been typicallystudied to capture the aspects of inclusion that are importantto persons with disabilities. It also considers how use of objec-tive and subjective indicators affect our understanding ofinclusion. Therefore, the findings of this study will add to theliterature by providing a more comprehensive understandingof the various aspects of social inclusion, specifically amongpersons with an ID. The results will also help providers anddecision-makers better appreciate the extent to which cleardefinitions and indicators of social inclusion are needed to

determine whether the services they provide do, in fact, supportor achieve inclusion.

METHODS

Procedure

Retrospective analyses were conducted using (anonymized)population-level data on adults (N = 1,014) residing in institu-tions assessed as part of regular practice during the final stagesof deinstitutionalization in Ontario (Canada), and a sample(n = 327) of adults receiving community-based residential ser-vices (i.e., living in group homes); both collected as part of pre-vious studies. Data were collected using a scannable paper-basedform in institutions, and in the community using a secure onlinesystem (that did not include personal identifiers) from which thecompleted assessments could be printed by the staff. Ethical clear-ance was provided by the Lakehead University Research EthicsBoard for study of the anonymized data.

Participants

Information was available on a total of 1,341 adults withID. On average, participants were 50 years of age (M = 49.8,SD = 11.1), and there was a higher proportion of males (59.4%).The cause of the intellectual impairment was unknown for46.6% of participants; where it was known, a genetic syndrome(other than Down syndrome) was listed for 41.1%, whereasDown syndrome and autism spectrum disorder were listed for9.3% and 3.0% of participants, respectively. Among those with adocumented IQ score (97.3% of the sample), the majority ofpersons had severe (19.6%) or profound (52.7%) levels of ID.Speech was the primary mode of communication for 43.1% ofpersons in the sample; the remainder (56.9%) used nonverbalmeans of communication. In terms of self-care skills, approxi-mately 35% required no-to-limited assistance, while 38.3%required more extensive assistance (e.g., weight-bearing supportfrom two or more helpers) and 26.8% were dependent onothers.

Measures

The interRAI ID is part of a suite of instruments thatcollectively represent an integrated information system (http://www.interrai.org) that facilitates communication between pro-fessionals in various settings, as well as tracking individual status,needs, and outcomes across settings (Martin, Hirdes, Fries, &Smith, 2007). In the province of Ontario (Canada), instrumentsfrom this suite have been mandated by the government for use inhome care, long-term care, and inpatient mental health servicesettings.

The interRAI ID informs collaborative decision-makingthrough a person-centered approach that builds on the indi-vidual’s strengths, preferences, and needs by providing a multi-dimensional perspective on the person’s life (Martin et al., 2007).

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In particular, it includes assessment of strengths (e.g., supportnetworks; psychosocial well-being), preferences (e.g., goals; desirefor change in employment, housing, or daily routine), commu-nity involvement (e.g., participation in meaningful activities,social activities, and leisure), relationships (e.g., presence of aconfidant, sense of ease when interacting with others, socialcontact with family and friends), challenging behavior, physicaland mental health (e.g., symptoms and diagnoses), environmen-tal factors (e.g., housing), and service use (e.g., developmentaland health services).

The assessments were completed by support staff whoreceived a 2-day training session on the completion of theinterRAI ID and the practical applications of the information itgenerates. All assessors were provided with a copy of the user’smanual that includes item-by-item descriptions and codinginstructions, and were instructed to utilize all possible sourcesof information to complete the assessment (e.g., talking to theindividual, his/her family, staff observation, and available docu-mentation) (Hirdes et al., 2007).

Evidence of the reliability and validity of the scales embeddedwithin the instrument are provided elsewhere (Martin et al.,2007). Although information on inter-rater reliability of theinstrument has not been collected per se, earlier work has shownthat items in the interRAI suite are highly reliable in multiplesettings worldwide, where persons with ID were part of thesample (Hirdes et al., 2008).

Domains and Indicators

Hall’s (2009) work revealed six areas that are crucial to socialinclusion from the perspective of persons with disabilities: (1)being accepted as an individual beyond the disability; (2) havingsignificant and reciprocal personal relationships; (3) beinginvolved in activities; (4) having employment; (5) having appro-priate living accommodations; and (6) receiving formal andinformal supports. Of these six “domains” of social inclusion, fivecould be examined using items available in the interRAI ID; noitems were available related to acceptance. The indicators for“supports” focused on informal support only. The items in theinterRAI ID related to the five domains of social inclusion arebriefly described in Table 1. The “subjective” indicators representitems that required direct input from the individual.

Analyses

For dichotomous items (No = 0 and Yes = 1), the coding waspreserved where “yes” indicated the presence of something posi-tive (e.g., has a confidant, is employed, volunteers, has an infor-mal helper). In cases where “yes” indicated the presence ofsomething not desirable (e.g., interpersonal conflict, informalhelper distressed, squalid living conditions), the coding wasreversed in presentation and interpretation of results to ensurethat a score of “1” meant presence of an indicator of inclusion.Descriptive statistics were used to present rates for all indicators.Chi-square analyses were used to compare the rates of objectiveand subjective indicators within each domain. Spearman corre-lations were used to test the relationship between indicators. Only

statistically significant findings at p < 0.01 are reported. All analy-ses were performed using SAS 9.2 (SAS Institute, Cary, NC, USA).

FINDINGS

Rates for All Indicators

Table 2 shows the rates for each of the indicators. The resultshighlight the heterogeneity within each domain, and by thenature of the indicator. In particular, depending on the indicatorused, percentages may vary from 9.8% to 95.1% for social rela-tionships, from 24.7% to 88.6% for leisure, from 3.0% to 52.8%for productive activities, and from 16.3% to 97.7% for informalsupport.

In addition, significant differences between rates for objectiveand subjective indicators existed for leisure (c2

(1, n = 1,341) = 76.27;p < 0.0001), productive activities (c2

(1, n = 1,341) = 24.61; p < 0.0001),accommodations (c2

(1, n = 1,340) = 292.65; p < 0.0001), and informalsupport (c2

(1, n = 1,341) = 4.48; p = 0.0344). Here, objective measuresyielded higher rates for all except accommodations and informalsupport, where subjective measures had higher rates. No signi-ficant differences existed between the rates of objective andsubjective measures of social relationships.

Within Domain Correlations

Analysis of the relationship between the various indicatorswithin each of the domains was conducted. These results showedthat, although statistically significant, few indicators were highlycorrelated (i.e., 0.70 or above). Of the 59 correlations examined,only eight achieved the 0.70 cutoff, and these were within onlytwo of the five domains considered. Specifically, four were withinthe “social relationships” domain: family/friends not hostile towardperson with visit (r = 0.725, p < 0.0001) and other contact(r = 0.812, p < 0.0001) with family/friends in the last 3 days, andwith no interpersonal conflict with family/friends (r = 0.923,p < 0.0001); and other contact with family/friends in the last 3days and no interpersonal conflict with family/friends (r = 0.750,p < 0.0001); and four were within the “informal support”domain: has an informal helper with received support from infor-mal helper (r = 0.760, p < 0.0001), helper is able to continue caringactivities (r = 0.917, p < 0.0001), and primary helper not distressed,angry, or depressed (r = 0.943, p < 0.0001); and between receivedsupport from informal helper and primary helper not distressed,angry, or depressed (r = 0.720, p < 0.0001).

DISCUSSION

The goal of this study was to better understand the conceptof social inclusion and the indicators that could be used tomeasure it. A better understanding of social inclusion is crucialfor decision-makers and service providers so as to help definethe nature of their responsibilities, set actions, and assess theeffectiveness of their actions.



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The results showed that great variability existed among allindicators considered, and within domains. Overall, the percent-ages varied between 3.0% and 96.4% depending on which singleindicator of social inclusion was used. The fact that the propor-tions differed within domains, and that most were not stronglycorrelated, is especially interesting; it provides evidence that theselection of the indicator to represent the overall concept has ahuge impact on our understanding and measurement of socialinclusion.

The difference in the rates based on objective and subjectiveindicators for leisure, productive activities, accommodations, andinformal support is also noteworthy. In particular, simply beinginvolved in leisure and productive activities (i.e., objective mea-sures) yielded much higher rates than did the subjective indica-tors for those domains. Therefore, if social inclusion is basedon participation in activities alone, many more will be deemedincluded than if it was based on the person’s more subjectiveexperience of these activities. Reporting rates of employment and

TABLE 1InterRAI ID items related to the five domains of social inclusion

DomainsNumber ofindicators Objective indications Subjective indicators

Social relationships 7 n = 3 n = 4• Person reports having a confidant (yes/no).• Visit with family/friends in last 3 days

(yes/no).• Other contact with family/friends in last 3

days (yes/no).

• Person has a strong and supportiverelationship with family (yes/no).

• Interpersonal conflict with family/friends inthe last 3 days (yes/no).

• Family/friends are persistently hostile towardthe person in the last 3 days (yes/no).

• Interpersonal conflict with other clients/staffin the last 3 days (yes/no).

Leisure 4 n = 2 n = 2• Participation in social activities (e.g., church

group, informal club) in the last 3 days(yes/no).

• Participation in any one of 14 listedrecreational activities (e.g., exercise orsports, crafts, reading, gardening, games orcomputer games) in the last 3 days (yes/no).

• Person pursued involvement in activities ofresidential setting or community (yes/no).

• Person desires change in recreationalactivities—e.g., type, number, or level ofparticipation (yes/no).

Productive activities 5 n = 4 n = 1• Person is employed (yes/no).• Person is employed in competitive or

supported employment (yes/no).• Person volunteers (yes/no).• Person is involved in a day program

(yes/no).

• Person desires change in paidemployment—e.g., type, hours, pay(yes/no).

Accommodations 2 n = 1 n = 1• Person resides in a community setting

(yes/no).• Person desires for change in living

arrangements—e.g., location, type, who liveswith (yes/no).

Informal support 7 n = 4 n = 3• Person has an informal helper (yes/no).• Person has received support from an

informal helper in the last 3 days (yes/no).• Person has provided informal support to

another in the last 3 days (yes/no).• Plans for alternate future support or living

arrangements have been made—e.g., ifcurrent informal helper is no longer ableto provide support (yes/no).

• Informal helper is unable to continue caringactivities (yes/no).

• Primary informal helper expresses feelingsof distress, anger, or depression (yes/no).

• Family or close friends report feelingoverwhelmed by the person’s supportneeds (yes/no).



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TABLE 2Rates for all indicators

Domains Indicators All (n = 1,341)

Social relationships Objective indicatorsHas a confidant 18.4% (247)Visit with family/friend in last 3 days 9.8% (131)Other contact with family/friend in last 3 days 12.7% (170)

Any objective indicator 3 days 24.7% (331)Subjective indicators

Strong/supportive relationship with family 48.3% (648)No interpersonal conflict with family/friendsa 86.6% (193)Family/friends not hostile toward persona 95.1% (212)No interpersonal conflict with others/staff 73.8% (989)

Any subjective indicator 95.2% (1,276)Any indicator 96.4% (1,293)

Leisure Objective indicatorsParticipated in social activities in last 3 days 26.5% (355)Participated in leisure activities in last 3 days 88.6% (1,188)

Any objective indicator_3 days 89.3% (1,197)Subjective indicators

Pursued involvement activities in residence/community 36.3% (487)No desire for change in recreational activities 24.7% (331)

Any subjective indicator 44.6% (598)Any indicator 90.4% (1,212)

Productive activities Objective indicatorsEmployed 18.2% (239)Competitive or supported employment 3.0% (40)Volunteers 3.3% (44)Day program 52.8% (707)

Any objective indicator 62.6% (839)Subjective indicators

No desire for change in paid employment 22.5% (301)Any indicator 68.2% (915)

Accommodations Objective indicatorsResiding in a community setting 24.4% (327)

Subjective indicatorsNo desire for change in living arrangements 28.8% (386)

Any indicator 81.1% (1,088)Informal support Objective indicators

Has an informal helper 25.3% (339)Has received support from informal helper 16.3% (219)Person has provided informal support to another 18.3% (245)Plans for alternate future support/living arrangements made 74.2% (995)

Any objective indicator 86.9% (1,165)Subjective indicators

Informal helper is able to continue caring activitiesb 95.5% (297)Primary informal helper not distressed/angry/depressedb 91.5% (310)Family/Close friends not overwhelmed by support needs 96.4% (1,293)

Any subjective indicator 97.7% (1,310)Any indicator 99.4% (1,333)

aBased on n = 233 people who had any contact with family/friends in the last 3 days.bBased on n = 339 people who have an informal helper identified.Note: The authors agreed that participant ranking of indicators would have been interesting to study, but this was not possible. The study is based on retrospective(or secondary) analyses of existing anonymized data on persons in institutional and community settings; therefore, there was no interaction with participants.



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frequencies of social activities within the community is not onlyinsufficient to conclude whether or not a person is included, it isalso inadequate for determining whether the experience of socialinclusion is beneficial and satisfactory for the persons beingincluded (Cummins & Lau, 2003). For example, is a person “moreincluded” if he/she has high rates of participation in social andrecreational activities (objective measures) but has low ratesof pursuing/initiating involvement in those activities (subjectivemeasure), or a high desire for change in his/her activities (sub-jective measure)? Future work should seek to enhance our under-standing of the relationship between the subjective and objectiveaspects of inclusion, including the degree to which the person’sdesire for involvement in the various aspects of inclusion is amatch with actual levels of involvement, or the degree to whichthe person has control over his or her involvement.

However, the subjective indicators of informal support andaccommodations had higher ratings than objective indicators.Therefore, the quality of informal support or accommodationswas quite good, in spite of relatively lower occurrences of actualinformal support or residence in an institutional setting. Varia-tions observed between objective and subjective factors raise animportant issue: sole use of objective measures for social inclu-sion prevents understanding of the personal experience of socialinclusion. Persons’ perceptions of the help they get or where theylive may be just as important to inclusion as receipt of neededinformal support and residing in a community setting.

That said, we are unable to provide comment on whether ornot the rates observed in this study are high, low, or typical asthere was no comparison group—nor is there evidence in theliterature of what these rates “should” be among persons with ID,or in any other population. For example, what proportion ofthe general population does not desire any changes in their paidemployment? How many have received or provided informalsupport? How many have participated in social activities in thelast 3 days? While understanding the extent to which peopleare socially included is important, this understanding willremain limited until comparative studies are available in thegeneral population.

There is also an implicit assumption that the more a person issocially included, the better; higher scores have been interpreted asproof of better outcomes (Cummins & Lau, 2003). While it isassumed that these domains all contribute to a positive experience,there might be a limit to the extent to which social inclusionexperiences are beneficial and satisfactory. For example, a highscore on one aspect of inclusion (e.g., employment) could have anegative impact on other areas (e.g., social relationships). In thissense, more inclusion may be neither feasible nor beneficial for theperson. Further work is needed to better understand the associa-tion between the various aspects of social inclusion and overallquality of life, satisfaction, and well-being (Minnes et al., 2003);only then will we be in a position to comment on whether or notmore inclusion is better, or whether some aspects of inclusion aremore important than others to overall quality of life. More workneeds to be conducted in order to better understand social inclu-sion so as to assist service providers to be able to more clearly worktoward a level of social inclusion that works for the individual.

Similarly, analyses were not stratified by residential setting(i.e., institution vs. community), as the presence of an indicatorof inclusion should not be judged by where it is present. For

instance, what is important is that a person has pursued involve-ment in their place of residence, regardless of what type of resi-dence that is. Furthermore, just as it should not be assumed thata person is “more included” if he/she has higher rates of involve-ment in one aspect of inclusion (e.g., social relationships) ratherthan another (e.g., employment), it should not be assumed thata person is “more included” if activities are done in one type ofresidential setting over another.

This study is not without its limitations. First and foremost,the concept of social inclusion has not been well defined in theliterature, and little has been published on possible indicators;there is no “gold standard” for assessing social inclusion. There-fore, it was difficult to first identify what indicators should beincluded in the analysis, and then to assign them to a particulardomain. Second, we were unable to examine all domains of inter-est, as indicators were unavailable in the assessment instrumentused—in particular, there were no items that related to accep-tance. In addition, even when present, not all indicators availablewere included in the analysis. For example, involvement in aformal education program was not used given that the mean ageof the sample was approximately 50 years of age—an age at whichwe would not expect adults to be still involved in formal school-ing. Third, the time frames on which the items were based maynot have painted the full picture of the person’s involvement.Specifically, most items in the interRAI ID are coded based on thelast 3 days, although the time line is longer for many items. Inorder to be consistent, we adopted a 3-day time frame for allitems, which may have led to lower rates for some indicators(such as visits or other contact with family, or involvement insocial activities). Last, the data were largely based on a high-needspopulation (i.e., adults who live in specialized institutional set-tings for persons with ID), and may not necessarily reflect thecontexts of all persons with ID.

CONCLUSIONS

To our knowledge, this is the first study to simultaneouslyexamine various domains of social inclusion and the measuresused to operationalize them—including those that are typicallyused and those that have been identified by persons with disabili-ties as being important. It is also the first to consider the extent towhich the nature of the measure used (i.e., objective vs. subjec-tive) affects the outcome of inclusion. The results have high-lighted that it is not enough for service providers to articulate thattheir goal is simply to increase or promote social inclusion.Without an understanding of what social inclusion means, it isnot clear what services are aiming to achieve.

Furthermore, until there is a clear understanding of whatsocial inclusion is, there can be no “gold standard” for its evalu-ation. Therefore, future studies need to focus on the developmentof a conceptual framework for understanding the many aspects ofsocial inclusion, and then come to a consensus on the indicatorsthat can be used to measure those aspects. With that in hand,psychometric testing can begin, with evaluations done in both thegeneral and vulnerable or dependent populations so that scorescan be better understood, and services be evaluated in terms oftheir ability to achieve the goal of social inclusion.



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ACKNOWLEDGMENTS

This study was undertaken as part of the MultidimensionalAssessment of Services and Providers (MAPS). MAPS is aresearch program to inform the assessment of services and sup-ports for adults with intellectual/developmental disabilities inOntario, Canada. MAPS (www.mapsresearch.ca) is supported bya research grant from the Government of Ontario’s Ministry ofCommunity and Social Services. The views expressed in thisstudy report are not necessarily the views of all MAPS partners,researchers, collaborators or those of the Ministry.

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Definitions Matter in Understanding Social Inclusion

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