<p>The background to this thesis lies in the great changes that have occurred in the disability field during the last threes decades. The purpose of this thesis is to describe, analyze and try to understand how these changes impact on life conditions for adult persons with mild intellectual disabilities. The main focus in this study is to listen to the experiences of people with intellectual disabilities themselves. The questions addressed in the study are; how do people with intellectual disabilities experience participation, citizen-ship, social exclusion and social inclusion in society? Where are their daily arenas and what characterizes those arenas in terms of citizenship, exclusion and inclusion? What type of experiences do they have from encountering people in the community, from encountering the organisations and staff that provide support and service and from the consequences of disability policies in practise? How do staff close to them work to reach the goals of participation? What role can professionals play in supporting participation? Which possibilities and barriers do the staff experience?</p><p>Empirical data for the study has been gathered by qualitative methods, mainly participant observations and interviews but also from document analysis of local authority documents, official guidelines, laws and national and international disability policy documents.</p><p>The theoretical framework is based on theories about citizenship and participation. Social exclusion and social inclusion are the sensitizing concepts in this study. For the interpretation and analysis theories about citizenship, participation and categorization were used.</p><p>In the light of the empirical findings the results of the study show that three main themes were promi-nent. The first theme concerned the daily arenas, were there were both excluded arenas and included are-nas with various forms of interaction with the society. The arenas for support and service in housing and daily activities are described as excluded arenas with mainly internal social interaction. On the other hand the new arenas such as daily activity centres, located in the community, such as cafés, shops run by peo-ple with intellectual disabilities together with staff had frequent interaction with other people in the soci-ety. The second theme concerned the content in the encounters between respondents with intellectual disabilities and different actors in the community. The informants had both positive and negative experi-ences of these encounters. The encounter with the disability policy was, according to this dissertation, that the user informants hade many experiences of lacking social citizenship but also that they experienced structural inclusion when politicians listen to them and answered their questions. The third theme con-cerned how the staff works to reach the goals of participation where both possibilities and barriers exist on structural and individual levels. This study illustrates the user informants’ many experiences of citi-zenship and social exclusion but also examples of social inclusion.</p><p>In the concluding chapter the results are discussed and analyzed in relation to the theoretical frame-work, where the concept of categorisation was very important. Finally, the description of the process clearly illustrates the difficulties for disability service organisations to develop support and services that are adapted to the actual disability policy. The results shed light on the gap between theory and practise.</p><p>Some of the most positive changes towards inclusion in society for people with intellectual disabilities come from services run by users and staff close to them. Final conclusions and reflections of the results in the study are that support and service also can be discussed in terms of universalism in order to reduce the process of categorisation.</p>

The background to this thesis lies in the great changes that have occurred in the disability field during the last threes decades. The purpose of this thesis is to describe, analyze and try to understand how these changes impact on life conditions for adult persons with mild intellectual disabilities. The main focus in this study is to listen to the experiences of people with intellectual disabilities themselves. The questions addressed in the study are; how do people with intellectual disabilities experience participation, citizen-ship, social exclusion and social inclusion in society? Where are their daily arenas and what characterizes those arenas in terms of citizenship, exclusion and inclusion? What type of experiences do they have from encountering people in the community, from encountering the organisations and staff that provide support and service and from the consequences of disability policies in practise? How do staff close to them work to reach the goals of participation? What role can professionals play in supporting participation? Which possibilities and barriers do the staff experience? Empirical data for the study has been gathered by qualitative methods, mainly participant observations and interviews but also from document analysis of local authority documents, official guidelines, laws and national and international disability policy documents. The theoretical framework is based on theories about citizenship and participation. Social exclusion and social inclusion are the sensitizing concepts in this study. For the interpretation and analysis theories about citizenship, participation and categorization were used. In the light of the empirical findings the results of the study show that three main themes were promi-nent. The first theme concerned the daily arenas, were there were both excluded arenas and included are-nas with various forms of interaction with the society. The arenas for support and service in housing and daily activities are described as excluded arenas with mainly internal social interaction. On the other hand the new arenas such as daily activity centres, located in the community, such as cafés, shops run by peo-ple with intellectual disabilities together with staff had frequent interaction with other people in the soci-ety. The second theme concerned the content in the encounters between respondents with intellectual disabilities and different actors in the community. The informants had both positive and negative experi-ences of these encounters. The encounter with the disability policy was, according to this dissertation, that the user informants hade many experiences of lacking social citizenship but also that they experienced structural inclusion when politicians listen to them and answered their questions. The third theme con-cerned how the staff works to reach the goals of participation where both possibilities and barriers exist on structural and individual levels. This study illustrates the user informants’ many experiences of citi-zenship and social exclusion but also examples of social inclusion. In the concluding chapter the results are discussed and analyzed in relation to the theoretical frame-work, where the concept of categorisation was very important. Finally, the description of the process clearly illustrates the difficulties for disability service organisations to develop support and services that are adapted to the actual disability policy. The results shed light on the gap between theory and practise. Some of the most positive changes towards inclusion in society for people with intellectual disabilities come from services run by users and staff close to them. Final conclusions and reflections of the results in the study are that support and service also can be discussed in terms of universalism in order to reduce the process of categorisation.

Avhandlingen handlar om prospektivt minne (PM) hos personer med utvecklingsstörning. PM syftar på att formulera intentioner och genomföra dessa någon gång i framtiden, antingen inom en definierad tidsram eller i samband med en specifik händelse. Frågeställningar: 1. Finns det en kvalitativ och kvantitativ skillnad mellan prospektivt minne hos personer med utvecklingsstörning och en kontrollgrupp? (Artikel I – II) 2. Hur ser sambandet mellan prospektivt minne, arbetsminne och episodiskt minne ut hos personer med utvecklingsstörning och, skiljer sig detta åt jämfört med kontrollgruppen? (Artikel II) 3. Vilka förutsättningar vid inkodning och hågkomst är kompatibla? (Artikel III) 4. På vilket sätt kan svag association mellan olika delar av information bidra till prospektiva minnesfel? (Artikel IV) 5. Går det att särskilja en hög- respektive lågpresterande grupp personer med utvecklingsstörning med avseende på prospektiv minnesprestation? (Artikel II) Personer med utvecklingsstörning begår fler prospektiva minnesfel än personer i kontrollgruppen. Motsvarande gruppskillnad finns inte för självskattat minne. Prospektiv minnesprestation är bättre med bilder jämfört med ord som prospektiva ledtrådar, mest tydligt för personer med utvecklingsstörning. Arbetsminneskapacitet visade ett samband med både prospektivt minne och antalet falska minnen i kognitivt krävande situationer, till exempel, situationer med flera parallella prospektiva minnesuppgifter. Falska minnen och prospektivt minne hade ett samband hos personer med utvecklingsstörning. Att felaktigt känna igen bilder med bara delvis bekanta delar och att känna igen prospektiva ledtrådar utan att komma ihåg själva intentionen hade ett samband hos personer med utvecklingsstörning. Personer med utvecklingsstörning var också sämre än kontrollgruppen på att upprepa tidsintervall. Detta kan till exempel bero på bristande episodiskt minne och begränsade strategier för att lösa den här typen av uppgifter. Resultaten diskuteras i relation till träning av prospektivt minne och val av hjälpmedel. / This thesis deals with prospective memory (PM) in individuals with intellectual disability. The term refers to planning and executing actions that cannot be performed immediately and have to be stored in memory and retrieved either within a specified timeframe or to be associated with a specific event. Following research questions were explored: 1. Does prospective memory performance in the intellectual disability group differ quantitatively and qualitatively compared to a control group of individuals without intellectual disability? (Paper I – II) 2. What are the relations between prospective memory, working memory and episodic memory in individuals with intellectual disability, and how are these relations different from the relations found in individuals without intellectual disability? (Paper II) 3. What conditions constitute compatibility between encoding and retrieval of prospective memory tasks? (Paper III) 4. In what way might weak binding contribute to PM failure? (Paper IV) 5. Is it possible to identify high and low PM-performing groups of individuals with intellectual disability? (Paper II) The results of the studies demonstrated that individuals with intellectual disability commit more PM errors than individuals in the control group, despite similarities in self-rated memory. Pictures as PM cues improved PM performance in comparison to words in both groups. This may be important primarily for recognition of the PM cue, particularly in the intellectual disability group. As to working memory capacity, it also shows a relation to both PM performance and binding performance in cognitively demanding situations (e.g., tasks with multiple parallel PM tasks). Furthermore, it was found that binding is related to PM performance in the intellectual disability group as there is a relationship between feature errors and recognition of cues, though not retrieving the correct intention. Finally, time reproduction was found to be weak in the intellectual disability group compared to the control group. This may be due to, for example, weak episodic memory and limited strategies for solving this type of task. These findings are discussed in relation to PM training and PM aids.

During the latter part of the 20th century the situation for people with intellectual disabilities in Sweden changed and developed. Clients have the right to participation and self-determination in society and in applied measures under the law of individual rights legislation; LSS. The purpose of this study is to describe and understand how team-leaders and managers in day-centres in a municipality works with participation and self-determination for clients, and what the professionals consider affects the client's possibility to self-determination and participation. The research questions intended to be answered are: • How does the team-leaders and managers work to enable self-determination and participation of the users in the public day-centres? • What does the team-leaders and managers describe and understand as enabling and limiting factors for the client’s possibility to self-determination and participation? The study is qualitative and interviews have been held with eight interviewees, which I contacted through snowball sampling. I contacted three managers and five team-leaders in day-centres. The result shows that the organization has different methods and approaches to enable self-determination and participation of clients in day-centres in the investigated municipality. Some forms are collective and some are individual. The results show that methods have elements of both empowerment and paternalism. The view and attitude from the team-leaders on clients as subjects or objects play a major role in how the daily work with self-determination and participation for clients is made possible. The second part of the result shows how the interviewees describe the complex interplay of various factors affecting the extent of the client's possibility to self-determination and participation. The result shows several factors that promote and many others that limit. There are many different kinds of circumstances described and understood as affecting the possibility. All informants describe the individual client's communicative ability as an important factor, and other circumstances mentioned are factors in the environment such as different actors in the client's network, workplace environment, and team-leaders personal qualities and knowledge in the field of disability.

Intellectual disability (ID) affects approximately 1-3% of the population and is defined as having an IQ below 70 as well as a significant limitation in adaptive behavior. The implementation of chromosomal microarrays (CMA) into the field of clinical genetics has revolutionized the ability to find genetic aberrations responsible for different genetic disorders. Importantly. these technologies have allowed several new microdeletion and microduplication aberrations to be identified that otherwise would have escaped detection using more conventional methods. Finding the genetic etiology of a syndrome and its association to the phenotype is paramount to better health care, provision of tailored therapy, presymptomatic screening, accurate prognosis, recurrence risk evaluation and in some cases prenatal testing. Despite the plethora of new information available, there are still a number of clinical and genetic features we do not fully understand. The aim of this work was to identify regions and syndromes associated with ID by CMA analysis and to make a detailed clinical description of the affected patients’ phenotype. In paper I we studied the 22q11.2 duplication syndrome and presented two familial cases with a description of both their genotype and phenotype. Additionally, 36 cases harboring the duplication were reviewed to further delineate the phenotype of the syndrome. In paper II, we revealed two unrelated patients with a deletion at 6q14.1-q15 and a distinct phenotype. Together with one previously reported patient our study suggests that a novel, clinically recognizable microdeletion syndrome exists in these patients. In paper III the phenotype and genotype of six unrelated patients with partially overlapping microdeletions at 10p12.31-p11.21 were described. Taken together with a previously reported patient we propose that these findings represent a new contiguous gene syndrome. In paper IV, two sisters; one presenting with two tandem interstitial duplications and the other a large deletion over the same region (6q13-q16) were reported. The reason for the CNVs was a maternal de novo translocation. This is the first case describing the genotype and phenotype of this duplicated region at 6q13-q16. In conclusion, four different genetic aberrations involved in the etiology of ID and their corresponding phenotypes and candidate genes have been characterized.

When we develop accounts of the good life we inevitably need to work with simplified images of human beings so as to limit the ideas our account must grapple with. Yet, in the process of this simplification we often exclude certain types of agents from having moral status because our image of humanity does not take their key features into account. The problems created by this type of simplification are very apparent when we consider how virtue ethics deals with the lives of people with Intellectual Disabilities. Since virtue ethics focuses on reason it very quickly excludes people with limited intellectual functioning from being moral agents who have access to the happy life. In this thesis I explore this problem of exclusion further and present a revised set of virtues based on the Capabilities Approach by Martha Nussbaum. By developing this new focus for virtue ethics I create a virtue-based approach to the good life that is not only more inclusive of agents with limited intellectual functioning but also represents a richer path to the good life for all agents.

<p>Speciallärarprogrammet med inriktning mot utvecklingsstörning</p>

The purpose of my study is to contribute with knowledge about three teachers’ view on the possibilities and difficulties to support students with intellectual disabilities insocial interaction.to get answers to my research questions in the analysis I have in my qualitative study used the theory of Fleck's model about thinking styles rooted in a socio-cultural perspective. In the study, I have used semi-structured interviews.   My study shows that teacher’s way of thinking affect students' opportunities to practice social interaction. An important finding in the study was that the school management’s attitude, is of great importance for educator’s opportunities to support the students with intellectual disability in social interactions. Through their actions school management affect what attitude and approach teachers will have against students with intellectual disability in school. The thinking styles in the study stems from the special education compensatory approach. Teachers emphasize that they themselves are important in supporting students with their interactions. When there is an interest at the school to include students with intellectual disability and teachers in the school activities, there are opportunities of many venues and situations where special educational students can interact with each other and with other students in a natural way. The study shows, that the teacher thinks that students in compulsory special schools need adult support in different interaction situations. They think that adults are required to create situation where students, with or without intellectual disabilities, can practice social interaction. They also think that adults are needed as role models and to actively participate in the interactions. / Syftet med min studie är att bidra med kunskap om tre pedagogers syn på möjligheter och svårigheter att stödja grundsärskoleelevers sociala samspel i skolan. För att få svar på mina forskningsfrågor i analysen har jag i min kvalitativa studie använt mig av Flecks teorimodell om tankestilar. Modellen bottnar i ett sociokulturellt perspektiv. I studien har jag använt mig av halvstrukturerade intervjuer. Min studie visar att pedagogernas tankestilar påverkar elevernas möjligheter att träna socialt samspel. En viktig upptäckt i studien var att skolledningens förhållningsätt har stor betydelse för pedagogernas möjligheter att stödja grundsärskolans elever i socialt samspel. Genom sitt agerande visar skolledningen vilken inställning och vilket förhållningssätt övrig personal kan ha mot grundsärskolans elever och deras möjligheter till socialt samspel.  De tankestilar som framkommer i studien bottnar i det specialpedagogiska kompensatoriska synsättet. Pedagogerna framhåller att de själva är viktiga för att stödja eleverna i det sociala samspelet. När det finns ett intresse på skolan att inkludera särskolans elever och personal i grundskolans verksamhet, då finns det möjligheter till många mötesplatser och situationer där grundsärskolan elever kan samspela med varandra och med grundskolans elever på ett naturligt sätt. Det framkommer i studien att pedagogerna tycker att det behövs vuxna som stöd i grundsärskoleelevernas olika samspelssituationer. Pedagogerna anser att vuxna behövs för att skapa situationer där elever, med eller utan funktionsnedsättning, får träna socialt samspel. De anser även att vuxna behövs som förebilder och som aktiva deltagare i samspelssituationer.

The purpose of this study is to describe some teachers´views on integration of students with intellectual disabilities in elementary school. The study is based on qualitative semistructures interviews with eight teachers who have experience of working with students with intellectual disabilities. The result of the study were analyzed on the basis Nilholm (2014) special educational perspective, which consists of the compensatory perspective, the critical perspective and the dilemma of perspective. The result show that teachers are very positive about the integration of students with intellectual disabilities. They see more advantages than disadvantages integration. The teachers se see as main benefit of the integration of differences and diversity among students enrich business, and benefits all students. Educators belive that it will be more difficult to integrate student with intellectual disabilities, the older student becom, then the differences become larger both socially and interms of knowledge. My study can help to create understanding and knowledge of how the process of integration regarding students with intellectual disabilities cab work in primary class.

Syftet med den här studien är att beskriva några elevers erfarenheter av att vara elev i gymnasiesärskolan och att lyfta fram deras berättelser. Med fokus på lärande, inflytande, delaktighet och tillhörighet.  Det är en studie som har sin grund i ett inifrånperspektiv som handlar om förståelse för elevers perspektiv. För att kunna förstå elevers perspektiv behövs tolkningar, tolkningar är den teoretiska ansatsen hermeneutikens grundsyn och därför fann jag hermeneutiken vara passande till min studie. Som metod för att kunna besvara mitt syfte har jag använt mig av livsvärldsintervjuer. Studiens resultat bygger på fyra elevintervjuer. Resultaten som framträdde var att eleverna var alla positiva till sin skola, de såg en skola där de fick känna gemenskap. De beskriver att meningen med att utbilda sig handlar om att lära sig något. Några har dessutom en tanke med att lärandet ska skapa bättre förutsättningar för dem i vuxen ålder. Resultatet visade också att eleverna är medvetna om sina behov, svårigheter och kunde relatera dem till olika situationer som de möter och har mött. Vad som också blev synligt i elevernas berättelser var att det förekom begränsad samverkan med gymnasiet. / The purpose of this study is to describe some pupils’ experiences of being a student in upper secondary schools forintellectual disabilities, and highlight their stories. The study has its focus on learning, influence, participation and belonging. It is a study with its base on an inside perspective; the understanding of the pupils' own perspective. In order to understand the pupils' perspective, you need interpretation. That are the theoretical approach to the basic view of the hermeneutic character, hence I found hermeneutics appropriate for my study. As a method to be able to find the answer of the purpose of the study, I have used the life-world interviews. The result of the study is based on the interviews of four pupils. The results that emerged was that all the pupils were positive about their school, they saw a school where were able to feel togetherness. They all describe that the purpose of education is about learning. Some also thought that learning could create better situations for them in adulthood. The results also showed that the pupils are aware of their needs and difficulties and can relate them to different situations they have faced and will face. What also became obvious in the pupils' stories was that there was limited interaction with high school.