Abstract The act of knowing is a critical determinant of what is known, yet there are limits and potential violence inherent in all ways of knowing. Social workers have an ethical responsibility to understand our means of knowing and our knowledge claims – both shape the work we do. Conspicuously under-represented as creators of/commentators on how they are represented, people with intellectual disabilities have had little/no control over what or how they are known. These ethical and epistemological concerns were the focus of this arts-informed qualitative study. The purpose was an interrogative encounter with one way of knowing – how public photographic imagery of people with intellectual disabilities influences knowledge about them. It was concerned, however, to come to this knowledge through an inquiry into how labelled people would, themselves, interpret and respond to these representations, and how they might use photography to trouble disabling images and non-disabled (social work) knowing. Theoretically framed by a critical disability lens, the work was influenced, too, by Derrida’s essay on photography, “The Right of Inspection”. The other regarding aspect of the philosophy of Emmanuel Levinas, his concern with our ethical responsibility to the alterity of the Other, most powerfully informs the work. Four adults with intellectual disabilities accepted the invitation to participate in this project. First, they critically engaged with a selection of public photographic images. In a unique methodological turn, they then transformed the images to reflect their critique. Interpretive analysis of the critiques and transformations identified four thematic ideas. Participants’ critiques were insightful and profound; transformations provocative and disruptive. Challenging dominant assumptions – and demanding non-disabled others re-think intellectual disability and people so labeled – the critiques and transformations also respond to the social/political/ideological/psychological ramifications of photographic imagery on the lived experience of intellectual disability. Through the work, participants confront non-disabled responses to public photographs and to labeled people, challenging non-disabled others to question their knowledge, attitudes, and behaviours. The work also raises questions about research and people with intellectual disabilities: the possibilities for voice and empowerment through inclusive research strategies and visual methodologies, and the transformative potential of dialogic encounters between people with and without intellectual disabilities.

Sammanfattning Denna studie avser att undersöka ungdomars sexuella handlingsutrymme. Syftet är att studera om det sexuella handlingsutrymmet uppfattas olika när det gäller ungdomar med, respektive utan, en lindrig intellektuell funktionsnedsättning. I analysen har särskild hänsyn tagits till tre bakgrundsfaktorer; ungdomars kön, föräldrars födelseland samt föräldrars religiositet. Definitionen av det sexuella handlingsutrymmet bygger på den unges uppfattning om vårdnadshavarens restriktioner gentemot den unge inom fyra områden; restriktioner i skolan och på fritiden, begränsningar i heterosexuella föräktenskapliga relationer, begränsningar i val av framtida äktenskapspartner samt begränsningar i sexuella relationer innan äktenskap. Studien bygger på en sekundäranalys av kvantitativt datamaterial hämtat från två tidigare studier, Schlytter m.fl. (2009) samt Davidian m.fl. (2012). Det sammanslagna datamaterialet består av 2576 respondenter från årskurs nio i Stockholms stad samt från det nationella programmet på gymnasiesärskolor i Stockholm, Göteborg, Malmö och Uppsala. Frågor som i datamaterialet berör restriktioner i skolan och på fritiden, begränsningar i heterosexuella föräktenskapliga relationer, begränsningar i val av framtida äktenskapspartner samt begränsningar i sexuella relationer innan äktenskap har bearbetats. Analysen av materialet har gjorts utifrån tidigare forskning samt teorin om socialkonstruktivism där respektabilitet, sexuella script samt det romantiska kärlekskomplexet och kärleksideologin varit framträdande begrepp/teorier. Studien visar tre huvudsakliga resultat. För det första att ungdomar med intellektuell funktionsnedsättning uppfattar större begräsningar när det gäller sexuella relationer innan äktenskap än vad ungdomar utan en intellektuell funktionsnedsättning. För det andra att ungdomar utan intellektuell funktionsnedsättning uppfattar större begränsningar i valet av sin framtida äktenskapspartner. Slutligen indikerar resultatet att när hänsyn tas till om ungdomar har föräldrar med hög religiositet, eller två utlandsfödda föräldrar, så är skillnaderna mellan ungdomar med och utan intellektuell funktionsnedsättning små. / Abstract The purpose of this study is to investigate adolescents’ understandings of opportunities to enact their sexuality both when a mild intellectual disability is present, and is not. In addressing the aim, three background factors have been taken into consideration; gender, parents country of birth and parents religiosity. In determining adolescents understanding of opportunities to enact their sexuality, the study looked at four outcomes; restrictions on schooling and leisure time, the restriction of heterosexual relations before marriage, restrictions in the choice of future husband or wife and restrictions in sexual relations before marriage. The study is based on quantitative data from two previous studies; Schlytter et.al. (2009) and Davidian et.al. (2012). The database contains 2576 respondents from the ninth grade in Stockholm and from the national programs in secondary special school in Stockholm, Gothenburg, Malmo and Uppsala. Variables that handles restrictions in school and on leisure time, restriction in heterosexual relation before marriage, restrictions in the choice of future husband or wife and restriction in sexual relations before marriage has been processed. The results of the study is analysed based on the theory of social constructivism where respectability, sexual script and romantic love and love ideology has been prominent. The study has three major findings. Firstly, adolescents with a mild intellectual disability experience restrictions in sexual relations before marriage more frequently than adolescents without an intellectual disability. Secondly, adolescents without an intellectual disability experience more limitations concerning the ability too freely choose a future husband or wife by themselves in comparison to adolescents with an intellectual disability. Lastly, the results indicate that the difference between adolescents with or without an intellectual disability and ‘room to act’ in relation to sexuality are small when the adolescents’ parents are born outside of Sweden or are considered by the adolescent to be very religious.

The study presented here is about how to make the special needs user who has a profound intellectual disability and additional disabilities more involved in their implementation plan. Based on a life story interview the study aims at analyzing perceptions of procedures to enhance special needs users’ influence. The method used in this study was a qualitative research approach as an overall approach in order to use a narrative method where life history is the method. The focus has been to study a part of an individual life history - a specific domain in the life of the interviewee’s working career. The results demonstrate that the staff needs to have the knowledge of how to observe, what to observe and how to highlight the impact of consciousness in the interaction between involved participants. The result also shows that staff attitudes affect special needs user’s participation in the implementation plan. It is shown in the results that it is of importance that staff has the knowledge regarding observation as a method and an approach that provides the special needs user with opportunities to experience meaningfulness and to find everyday life comprehensible and manageable.

<b>Background:</b> Individuals with intellectual disabilities (ID) have a higher prevalence of comorbid psychiatric disorders and challenging behaviours compared to the general population. Though less common, one area of concern among those with ID is pica (the ingestion of inedible substances). To date, there is little knowledge of pica, particularly with respect to its risk factors and social consequences. The closure of Ontario's three remaining facilities by 2009 underscores the importance of having knowledge of complex behaviours such as pica for improving supports and services in the community for these individuals. The aim of this study is to better understand the characteristics and support needs of adults with ID and pica. This study is comprised of a quantitative and qualitative component. <b>QUANTITATIVE STUDY</b> <b>Objectives:</b> To investigate the prevalence, risk factors, social and medical characteristics of pica. To determine how pica is managed in terms of hours of supervision, receipt of interventions, and psychotropic medication. <b>Methods:</b> Secondary data analysis was performed on two samples as part of cross-sectional study: 1008 persons with ID from Ontario's facilities and 420 community-dwelling adults with ID from southwestern Ontario. All persons had been assessed using the interRAI Intellectual Disability (interRAI ID)?a comprehensive and standardized instrument that measures a variety of domains for support planning. Bivariate and multivariate analyses were restricted to the facility sample due to the small size of persons with pica in the community. <b>Results:</b>The overall prevalence of pica was 22. 0% and 3. 3% in the facilities and the community, respectively. Logistic regression analysis showed that being male, cognitive functioning, autism, and being non-verbal were associated with a higher odds of having pica, whereas activities of daily living (ADL) was a protective factor. A quadratic relationship was observed between cognitive function and pica: the risk of pica increased with severity of cognitive impairment up to moderate to severe levels of impairment and then diminished among those with very severe cognitive impairment. Behaviour management, self-care skills, and 8 hours or more of one-to-one supervision were more likely to be provided to persons with pica. Compared to persons without pica, persons with pica had higher rates of being prescribed antipsychotic medication. Surprisingly, pica was not associated with higher rates of gastrointestinal health problems, with the exception of acid reflux. The negative social outcomes of pica, however, were many: pica was associated with higher odds of not having a strong and supportive relationship with family, lack of contact with family or other close relations, and absence of participation in social and recreational activities. <b>QUALITATIVE STUDY</b> <b>Objective:</b> To determine the support needs of adults with ID and pica from the perspective of direct-care staff of facility and community settings. <b>Methods</b>: Through two focus groups, the perspectives of four staff from Huronia Regional Centre (HRC), and six staff from community agencies from southwestern Ontario were examined. Transcripts were analyzed thematically for factors that facilitated or hindered the management of pica. <b>Results:</b> Qualitative data revealed three categories that underpinned reduction in pica: preventative measures (environmental controls, close supervision, and the provision of alternative activities), formal supports, and familiarity with the individual. On the other hand, inadequate staff support, lower functioning level of the individual, and lack of knowledge acted as barriers to managing and reducing pica. These barriers were associated with persons participating in fewer recreational activities and community outings, and in some cases the use of mechanical restraints. Barriers specific to each setting in the management of pica were also illuminated. Staff in both settings tended to be self-sufficient and isolated in managing this complex behaviour. <b>Conclusions:</b> Results suggest that attention should be equally paid to the potential social consequences of pica rather than solely to its health risks. Higher staff to client ratios, and training and education for staff to provide more active support to promote individuals' engagement in recreational activity and community integration is needed. Key recommendations also focus on educating and training staff on the risk factors and appropriate management of pica. Improving the collaboration and knowledge exchange among developmental service agencies is also recommended to enhance the management of pica among caregivers. Lastly, the community at large needs education on pica to foster more inclusive community living for those with ID.

Participation of people in all ages is one of the main goals in Swedish disability policy. Despite this, ageing and becoming old with intellectual disability has been given very little attention in policy documents and guidelines regarding support and service provided for this group. This thesis aims to explore ageing and participation among older people with intellectual disabilities who live in a group homes in accordance to the Swedish Disability Act. The focus has been on the group of people who were born before or around 1960. This group belongs to a generation that share unique experiences. They have lived a long life with disability, and they have experienced first-hand the development of the Swedish disability policy that started in the 1960s and resulted in today’s disability policy. These experiences carried through life course are likely to influence this group’s opportunities to participate as they age and reach later life. The thesis has a multiple methodological approach. Participant observations were executed and combined with individual semi-structured interviews with older people with intellectual disabilities as well as group home staff. The results of this thesis show that there is a discrepancy between how older people with intellectual disabilities experience ageing and later life and how these in turn are described by the staff. The thesis also reveals how aging and becoming old is not given particular attention to in everyday discussions in the group home, and that aging is understood mainly as a physical phenomenon. The results show that the formal organizational culture of the group home is weak in relation to ageing and becoming old with intellectual disability. This is because the staff perceives a lack of preparation, discussion and working methods on how to support participation among older residents. The results also show, however, that the residents’ age does play an important role for the staff’s perceptions and attitudes regarding participation of the older residents. The concept of participation is described and  operationalized as a social contextual doing, and as an aspiration to create a sense of coherence or experience of meaning and security at home. Finally, this thesis underlines that the life course unique to persons growing old with intellectual disabilities may influence the opportunities for and the experience of participation in the group home. / Delaktighet i alla åldrar är ett av funktionshinderspolitikens centrala mål. Trots detta har att åldras och vara äldre med intellektuell funktionsnedsättning inte uppmärksammats i politiska dokument och riktlinjer kring hur stöd och service ska ges till denna grupp. Denna avhandling syftar till att belysa och problematisera åldrande och delaktighet bland äldre personer med intellektuell funktionsnedsättning som bor i gruppbostad enligt Lagen om stöd och service till vissa funktionshindrade. I fokus står personer som är födda före eller omkring 1960. De tillhör en generation som delar unika erfarenheter. Dels har de levt ett långt liv med funktionsnedsättning, dels har de varit en del av den funktionshinderspolitiska resa som startade i Sverige under 1960-talet och som har lett fram till dagens funktionshinderspolitik. Detta är erfarenheter som de har burit med sig genom livsloppet och som kan antas påverka möjligheten till delaktighet när de åldras och blir äldre. Denna avhandling har ett multipelt metodologiskt angreppssätt i form av deltagande observation kombinerat med individuella semistrukturerade intervjuer med äldre personer med intellektuell funktionsnedsättning och deras personal. Avhandlingen visar att det finns skillnader mellan hur äldre personer med intellektuell funktionsnedsättning själva erfar att vara och bli äldre och hur detta fenomen beskrivs av gruppbostadens personal. Avhandlingen visar också att åldrande och att vara äldre inte ges utrymme i gruppbostadens vardagliga diskussioner där åldrandet främst betraktas som ett fysiskt fenomen. Avhandlingens studier belyser även att gruppbostadens formella organisationskultur är svag i förhållande till att åldras och vara äldre med intellektuell funktionsnedsättning. Detta då personalen upplever att det saknas förberedelse, diskussion och arbetsmetoder kring hur stöd för delaktighet ska erbjudas äldre boende. Resultatet visar emellertid att de boendes ålder har betydelse för personalens föreställningar och förhållningssätt gällande delaktighet bland äldre boende. Denna delaktighet beskrivs och operationaliseras dels som ett socialt kontextuellt görande, dels som en strävan efter att skapa en känsla av sammanhang och trygghet i hemmet. I tillägg till detta framkommer att den studerade generationens unika erfarenheter av att ha levt ett långt liv med intellektuell funktionsnedsättning, är betydelsefulla för hur delaktigheten ser ut i gruppbostaden och hur den beskrivs av både boende och personal.

Research using visual activity schedules (VAS) with embedded video models (VM) has been effective to teach novel skills to children and adolescents with intellectual disability (ID). However, there is limited research using VAS/VM to teach adults with ID. The purpose of the current study was to determine if VAS/VM could be used as a self-instructional tool for adults with ID to increase independence in laundry skills. Results from the current study provide evidence that a functional relation exists when using VAS/VM to teach laundry skills to adults with ID. Two adults generalized the use of the VAS/VM to a novel setting with similar tasks.

The purpose of the study is to investigate former students’ view of their experiences of schools for students with intellectual disability. Both students of this study have a mild form of intellectual disability. The question of this study is to find out more of their experiences from their whole schooling.   The theoretical frame of the study is based on a life narrative perspective. The focus in this perspective was the social interaction and the students’ experiences of schooling. The method was a life narrative perspective were former students with intellectual disability talked about their life story in special schools.   The result of the study showed that students who were included in the ordinary school, and have the opportunity to remain in the ordinary class, got a better view of the school. If the students instead were forced to attend lessons in special school, against their own wish, they become disappointed, sad and frustrated. To separate students from their regular class could have devastating consequences, especially for the person who was excluded from their friends. The result also showed that the person who was excluded from the ordinary school felt ashamed and would not be connected with a group that was specially treated   As a teacher for students with special need we have to be aware of what the pupils need instead of what the school offer. We should not forget that all our decisions will have an impact of the students’ former life. / Målet med studien är att undersöka före detta elevers syn på deras erfarenheter i skolan för elever med intellektuell funktionsnedsättning. Studiens båda elever har en lindrigare funktionsnedsättning. Studiens frågeställning är att få reda på mera om deras erfarenheter genom hela deras skoltid.   Studiens teoretiska utgångspunkt utgår från ett livsberättande perspektiv. I fokus på detta perspektiv var det sociala samspelet och elevernas egna erfarenheter om skolgången. Metoden som användes var livsberättelseperspektivet där före detta elever med intellektuell funktionsnedsättning berättade sin livsberättelse om grundsärskolan.   Studiens resultat visade att elever som var inkluderade i den vanliga skolan, och hade möjlighet att stanna kvar i den vanliga klassen, fick en bättre uppfattning av skolan. Om eleverna istället blev tvingade att delta på lektioner i en speciell skola, mot deras egen önskan, blev de blev besvikna, ledsna och frustrerade. Att dela upp elever från den vanliga klassen kunde få förödande konsekvenser, speciellt för personen som blev exkluderad från sina vänner. Resultatet visade också att personen som blev exkluderade från den vanliga skolan kände skam och ville inte tillhöra en grupp som blev särbehandlad.   Som en lärare för elever med särskilda behov måste vi vara uppmärksamma på vad eleverna behöver istället för vad skolan erbjuder. Vi får inte glömma bort att alla våra beslut kommer att ha en påverkan på elevernas kommande liv.

Résumé : Introduction : Au Québec, jusqu’à l’âge de 21 ans, les enfants et adolescents ayant une déficience intellectuelle (DI) profonde ont des services de pédiatrie adaptés et l’opportunité de fréquenter des écoles spécialisées publiques. Toutefois, au-delà de cet âge, l’accès à ces services spécialisés est plus limité : le financement pour la fréquentation scolaire cesse et les jeunes adultes transfèrent des services de santé pédiatriques vers le secteur adulte. Malgré la mise en place de solutions visant à faciliter cette transition, des difficultés tendent à persister, une situation pouvant avoir des effets négatifs considérables au niveau de la personne ayant un handicap et de sa famille. Cependant, peu d’études se sont intéressées aux facteurs qui influencent le vécu de la transition vers la vie adulte des familles de jeunes personnes présentant une DI profonde, rendant difficile l’adaptation des programmes déjà existants de planification de la transition à la réalité de ces familles. Objectif : Ce projet vise à décrire les besoins des personnes présentant une DI profonde et de leur famille lors de la transition vers la vie adulte, en décrivant le vécu des parents lors de cette période et les facteurs qui l’influencent, ainsi qu’en explorant les pistes de solution à mettre en place. Méthodologie : Afin de réaliser cette étude qualitative, un devis descriptif interprétatif a été choisi. Deux entrevues semi-dirigées individuelles ont été réalisées auprès de quatorze parents, la deuxième entrevue permettant de valider et d’approfondir les résultats à l’aide d’un résumé de la première rencontre. Résultats : Plusieurs facteurs multisystémiques de l’ordre du soutien matériel, informatif, cognitif et affectif semblent influencer la transition vers la vie adulte. Ces différents facteurs contribuent au vécu particulièrement difficile des familles, qui vivent beaucoup d’anxiété et de frustration face au peu de soutien qui leur est offert. Plusieurs idées intéressantes ont été proposées par les parents pour répondre à ce manque de soutien, autant au plan du partage des connaissances, de l’amélioration de la collaboration inter-établissement que du soutien psychologique. Conclusion : Cette étude souligne l’importance d’impliquer l’ensemble des acteurs œuvrant auprès du jeune adulte et de sa famille dans la planification de la transition. La compréhension de la réalité des personnes avec une DI profonde et de leur famille devrait permettre de développer des interventions concrètes leur étant destinées dans de futurs projets. / Abstract : Introduction: In Quebec, until the age of 21, children and teenagers with profound intellectual disability (ID) have adapted pediatric health services and the opportunity to attend specialized public schools. However, beyond this age, access to specialized services is more limited: funding for school attendance ceases and young adults have to transfer from pediatric health services to the adult health services. Despite the implementation of solutions to facilitate transition to adulthood, some difficulties tend to persist, a situation that could have significant adverse effects on the person with a disability and their families. However, only few studies have focused on factors that influence the experience of the transition to adult life of families with a young people having profound ID, making it difficult to adapt transition planning programs to the reality of these families. Objective: This project aims to describe the needs of people with profound ID and their families during the transition to adulthood, by describing the experience of parents during this period and the factors influencing it, and by exploring potential solutions to implement. Methodology: In order to achieve this qualitative study, an interpretative descriptive design was used. Two individual semi-structured interviews were conducted with fourteen parents, the second interview was made to validate and deepen the results with a summary of the first interview. A semi-structured interview guide was created for the first interview and was previously validated by two families with a child with ID. Results: Several multisystemic factors targeting material, informative, cognitive, and emotional support seem to influence the transition to adulthood. These factors contribute to the particularly difficult experiences of families who live a lot of anxiety and frustration facing the lack of support offered. Several interesting ideas have been proposed by parents to address this lack of support, both in terms of knowledge sharing, improvement of inter-institutional collaboration, and psychological support. Conclusion: This study highlights the importance of involving all stakeholders working with young adults and their families in planning the transition. Understanding the reality of people with profound ID and their families will help to develop concrete actions for future projects.

The purpose of this study was to examine whether or not Public Service Announcements (PSAs) were an effective tool at modifying young adults’ perception of the r-word (the word “retard” or “retarded”). The PSAs included in this study were part of the Special Olympics’ “Spread the Word to End the Word” campaign. This study examined the efficacy of these PSAs by comparing three groups’ perception of the r-word: experimental group 1 who watched a PSA titled “It’s Not Acceptable” (PSA 1 group), experimental group 2 who watched a PSA titled “We Need a New R-word” (PSA 2 group), and a third control group who watched no PSA. The purpose of the control group was to gain a baseline of how today’s young adults perceived the r-word with no influence from PSAs. Six hundred and seventy-five participants were randomly assigned to one of the three groups. The two experimental groups watched their respective PSAs and completed the survey materials comprised of a consent form, their affective and cognitive responses to the PSA, their ratings of the r-word and their demographic information. The control group watched no PSA but completed the survey materials comprised of a consent form, their ratings of the r-word and their demographic information. This study then examined what the differences were between the three groups’ perception of the r-word. It was hypothesized that PSA 1 group would have a more negative perception of the r-word than PSA 2 group and the control group, due to PSA 1’s framing the r-word as similar to other minority slurs, and using affect to facilitate message acceptance. The PSA 1 group participants thought more about the argument within their PSA, and rated higher affective responses to their PSA, when compared to the PSA 2 group; however, PSA 1 group did not have a more negative perception of the r-word than the other two groups. Results found that the PSA 2 group perceived the r-word as significantly less respectful than the participants in the control group. These findings are discussed in terms of message design for future PSAs regarding the r-word

Syftet med studien var att undersöka hur socialsekreterare arbetar med barnavårdsärenden där en förälder har intellektuellt funktionshinder. Studien utgick från två frågeställningar; hur socialsekreterarna upplever mötet med dessa föräldrar och var de hämtar kunskapen inom detta område. En fokusgruppsintervju genomfördes med sex deltagare. Studiens resultat visade att socialsekreterarna upplevde osäkerhet i bemötande och bedömning av familjer med intellektuellt funktionshinder. Denna studie visade också att det finns brister i samverkan och osäkerhet mellan myndigheter, och att socialsekreterarens kunskapsbas främst är erfarenhetsbaserad. Slutsatsen är att det saknas evidensbaserade metoder och att kunskapsområdet präglas av osäkerhet. / The aim of the study was to investigate how social workers, within the social child care, work with parents with intellectual disability. Two questions were investigated: how the social workers experienced meeting the parents and what was their knowledge base. A focus group interview was conducted with six participants. The results of the study showed that social workers experienced uncertainty in meeting and assessment the families with intellectual disability. Further, the study showed that there were weaknesses and uncertainty in cooperation between authorities, and that the knowledge used by the professionals was mainly experience based. The conclusion is that there is a lack of evidence based methods and the field is characterised by uncertainty.