La déficience intellectuelle (DI) est une trouble du neuro développement caractérisée par une extrême hétérogénéité génétique, avec plus de 700 gènes impliqués dans des formes monogéniques de DI. Cependant un nombre important de gènes restent encore à identifier et les mécanismes physiopathologiques de ces maladies neuro développementales restent encore à comprendre. Mon travail de doctorat a consisté à identifier de nouvelles causes génétiques impliquées dans la DI. En utilisant différentes techniques de séquençage de nouvelle génération, j’ai pu augmenter le taux de diagnostic chez les patients avec DI et identifié plusieurs nouvelles mutations (dans AUTS2, THOC6, etc) et nouveaux gènes (BRPF1, NOVA2, etc) impliqués dans la DI. Pour les moins caractérisés, j'ai effectué des investigations fonctionnelles pour valider leur pathogénicité, caractériser les mécanismes moléculaires qu'ils affectent et identifier leur rôle dans cette maladie. Mes travaux de doctorat permettront d’améliorer et d’accélérer la possibilité d’obtenir un diagnostic moléculaire qui donnera accès à un meilleur suivi et à une meilleure prise en charge pour les patients. Cela permettra également de mieux comprendre les mécanismes physiopathologiques impliqués dans ces troubles neuro développementaux. Ces connaissances aideront éventuellement à identifier de nouvelles cibles thérapeutiques. / Intellectual disability (ID) is a group of neurodevelopmental disorders characterized by an extreme genetic heterogeneity, with more than 700 genes currently implicated in Mendelian forms of ID but still some are not yet identified. My PhD project investigates the genetic causes of these monogenic ID by using and combining different NGS techniques. By using this strategy, I reached a relative high diagnostic yield and identified several novel mutations (in AUTS2, THOC6) and genes (BRPF1, NOVA2, etc) involved in ID. For the less characterized ones, I performed functional investigations to prove their pathogenicity, delineate the molecular mechanisms altered and identify their role in this disease. Overall, this work improved and provided new strategies to increase the molecular diagnosis in patients with ID, which is important for their healthcare and better management. Furthermore, the identification and the characterization of novel mutations and genes implicated in ID better delineate the implicated pathophysiological mechanisms, opening the way to potential therapeutic targets.

Aims There is an increasing focus on factors associated with resilience in parents of children with disabilities. Two such resilience factors are hope and locus of control. This thesis aimed to review the existing literature on hope and its relationship to psychological outcomes, in parents of children who have a disability. A research study aimed to explore relationships between two resilience factors, hope and locus of control, and their links with knowledge of behavioural principles and challenging behaviour. Methods To address the first aim, a systematic review of the literature was conducted for hope (operationalised using Snyder’s model of hope). Nine online databases were systematically searched using a set of pre-defined criteria. Eligible papers were rated for quality using an established tool (SIGN, 2008) adapted for this review. Secondly, a cross-sectional research study sampled mothers of children with an intellectual disability (N=32) who completed four self-report measures online: State Hope for the Child Scale (based on the State Hope Scale), Parental Locus of Control Scale (child control and parental control subscales), Behavior Problems Inventory for Individuals with Intellectual Disabilities – Short Form, and the Knowledge of Behavioural Principles Questionnaire (KBPQ), which was developed for the study. Results The systematic review identified 11 papers; three were rated as good quality, seven rated as fair quality and one rated as poor. Studies included participants whose children had a range of disabilities. Participants in the following groups were overrepresented: white, middle to high socio-economic status mothers, educated to college or graduate degree level and who self-selected to participate. For all studies, mean hope was higher than the median value for each scale used, suggesting the presence of hope in most parents. Hope was positively associated with a range of variables, such as, quality of life, and negatively associated others, including stress. There were differences in the interactions between hope components of agency and pathways, and psychological variables. There were also differences between how maternal and paternal hope related to psychological variables. The characteristics of those recruited to the research study mirrored those found in previous research. The majority of participants were married/cohabiting mothers, living in areas of higher socio-economic status, and caring for a child with a moderate or severe ID. In addition, there was a higher incidence of children with autism spectrum disorder in this sample. Mothers reported feeling hopeful, although they experienced a range of challenging behaviours (mean 14.6 behaviours per child). Due to poor psychometric properties of the KBPQ, data was not included in the analysis; however, some areas of strength and weakness in knowledge were evident. Correlational analysis showed that higher levels of resilience factors were associated with lower levels of self-injurious and aggressive/destructive behaviour. Stereotyped behaviour was not associated with either hope or locus of control. In contrast to previous research, higher hope was associated with a more external locus of control for the child control subscale. Conclusions and implications Hope is an established resilience factor in the general population. Findings from both the systematic review and research study suggest that hope is present in parents and caregivers of children with a disability. The systematic review demonstrated consistent adaptive relationships between hope and psychological variables. This highlights hope’s role as a resilience factor in parents of children with a disability. The research study added to the literature on how maternal hope and locus of control inter-relate in this population. Generalisability of study results was limited by sample size, population characteristics and by scales used. However, overall findings suggest that it would be beneficial to consider resilience factors when planning and evaluating interventions and research. Furthermore, examining specific aetiologies of disability, such as ASD, might also clarify whether these affect the relationships between hope and other psychological variables.

Le polyhandicap est la conséquence d'une atteinte massive et précoce du Système Nerveux Central. Les personnes polyhandicapées présentent donc des difficultés motrices sévères ainsi qu'une déficience intellectuelle profonde, leur QI étant statistiquement estimé comme étant inférieur à 20. De ce fait, ces personnes ont besoin d'une assistance dans la réalisation des actes de la vie quotidienne, présentent des capacités d'apprentissage très limitées et n'ont pas accès à une communication symbolique. Aujourd'hui, nous ne savons que très peu de choses sur la vie cognitive des personnes polyhandicapées, et sur la manière unique et originale dont chacune d'entre elles construit ses connaissances sur le monde et développe ses propres compétences. Si l'étude et la compréhension du développement de l'enfant et du jeune polyhandicapé peut s'adosser sur les modèles et outils d'évaluation issus de la psychologie du développement, l'appréhension de sujets adultes reste, en revanche, très peu balisée. Ceci serait principalement lié au fait que chaque personne polyhandicapée présente des restrictions motrices importantes, une absence de langage oral et un répertoire de réponses comportementales dont l'interprétation va rester soumise à une importante variabilité inter-observateurs. L'objectif de ce projet de recherche est de mettre au point une méthode d'étude des compétences cognitives des personnes polyhandicapées de tout âge qui puisse tenir compte à la fois des spécificités liées à leurs handicaps multiples, tout en favorisant un cadre d'interprétation objectif des réponses comportementales de chaque personne. Pour cela, nous nous sommes donc inspirés des études menées chez des nourrissons âgés de quelques mois, basées sur le principe de l'habituation visuelle. Le paradigme d'habituation visuelle postule qu'un sujet exposé de manière répétée à un même stimulus visuel présentera un déclin progressif de la durée de fixation, correspondant à la construction et à la consolidation d'une représentation en mémoire de l'objet. La présentation d'un nouveau stimulus va donc entraîner une augmentation des temps de fixation, signe que le sujet s'est montré capable de comparer le nouvel objet à la représentation interne du précédent. Ainsi, il est possible d'étudier les capacités de discrimination et de mémorisation de sujets humains et non-humains, indépendamment de toute aptitude motrice ou verbale, seul le comportement visuel étant pris en compte. La première étape de notre travail de recherche a d'abord consisté à créer des conditions favorables à l'implémentation d'épreuves basées sur le paradigme d'habituation visuelle auprès d'un public de personnes polyhandicapées adultes. Une étude de faisabilité a donc d'abord été conduite à travers laquelle nous avons pu traiter d'aspects aussi bien matériels que méthodologiques. Nous avons ainsi pu mettre au point des conditions de passation et un matériel adapté. Ensuite, nous avons pu valider l'utilisation de cette approche auprès d'un échantillon plus large d'individus, en mettant en évidence un phénomène d'habituation et de déshabituation sur une épreuve de perception simple. Enfin, nous nous sommes penchés plus spécifiquement sur la manière dont ce paradigme pouvait s'appliquer à l'étude de certains domaines de compétences cognitives, et plus spécifiquement la perception du nombre et des quantités. Pour cela, trois tâches inspirées de la littérature en psychologie du développement ont été mises au point. Nous avons trouvé que les participants sont capables de différencier deux quantités d'objets lorsqu'aucune variable confondue n'est contrôlée, et que la position des objets reste déterminante dans leur capacité d'encodage des stimuli. Ces données nous ont conduits à réfléchir de manière plus globale sur la manière dont ces personnes peuvent construire leurs connaissances en l'absence d'action directe sur les objets de leur environnement. / L'auteur n'a pas fourni de résumé en anglais.

Made available in DSpace on 2014-06-11T19:24:22Z (GMT). No. of bitstreams: 0 Previous issue date: 2011-09-29Bitstream added on 2014-06-13T20:52:05Z : No. of bitstreams: 1 moscardini_sf_me_arafcl.pdf: 3034505 bytes, checksum: a70a371fa6c3520cefac5f77aee64fd9 (MD5) / Tendo em vista a importância que as questões inerentes ao processo de inclusão escolar assumem no debate educacional contemporâneo, essa pesquisa se propõe a observar como a escolarização do aluno com deficiência intelectual vem se estruturando no bojo do movimento inclusivo, identificando o significado que o trabalho com conteúdos acadêmicos assume tanto no contexto regular de ensino, quanto nas propostas de atendimento especializado oferecidas a essas pessoas. As particularidades presentes nas práticas docentes desenvolvidas nesses contextos também serão analisadas de modo a identificar se essas iniciativas podem suprir as demandas educacionais, possibilitando a evolução cognitiva dessa população. Foram selecionados quatro alunos que se encontravam matriculados no primeiro ciclo do ensino fundamental de uma escola pertencente a rede municipal de ensino de uma cidade do interior paulista, identificados com deficiência intelectual pelas professoras especialistas responsáveis pela Sala de Recursos Multifuncional (SRM). Essa investigação, de caráter qualitativo, é um estudo descritivo que se valeu, ao longo do processo de coleta de dados, da observação e da análise das atividades realizadas pelos alunos durante o período no qual frequentavam o ensino comum e a SRM. As informações foram organizadas em um Diário de Campo, sendo que, em um segundo momento, construiu-se categorias analíticas que possibilitaram o agrupamento dos dados coletados. Os resultados destacam o distanciamento existente entre o ensino comum e a Sala de Recursos Multifuncional, o que impossibilita a estruturação de propostas semelhantes de trabalho que possam contribuir para o desenvolvimento cognitivo do aluno com deficiência. Essas realidades são pautadas pela oferta de atividades fragmentadas e extremamente simples que contribuem superficialmente... / Taking into account the importance of questions inherent to the process of inclusive education for the ongoing debate on contemporary educational matters, the present study aimed to investigate how the inclusion of intellectually disabled people in common school is being structured in the context of the movement for educative inclusion. We aimed to identify the significance that the work with academic contents has within the context of both standard educative processes and specialized proposals offered to those subjects. The particularities associated to teaching practices developed in those contexts are also analyzed, with the objective of identifying whether those initiatives can supply the educational demands, and promote cognitive evolution of the focal population. We studied four students from a municipal basic primary school from a city located in São Paulo state. The students were identified to be intellectually disabled by specialist teachers from the Multifunctional Resources Room (SRM, on its Portuguese spelling). The present study, of qualitative character, is a limited descriptive study that used, for data collection, observational techniques and the analysis of activities developed by students during the time-period in which they attended common school and SRM. All collected data was organized in a Field Diary and grouped according to pre-established analytical categories. Our results highlighted the distance existing between common educative processes and those of SRM, which prevents the formulation of common working proposals that can contribute towards an effective cognitive development of students. We observed extremely simple and fragmented activities that did not effectively contribute to the academic progress of children. Furthermore, those activities were not... (Complete abstract click electronic access below)

Submitted by ANA PAULA RIBEIRO ALVES null (dani_anapaula@hotmail.com) on 2018-03-11T23:47:45Z No. of bitstreams: 1 DISSERTAÇÃO REPOSITÓRIO.pdf: 1530826 bytes, checksum: 4e440422d9aede67018a74246221c2e9 (MD5) / Approved for entry into archive by Telma Jaqueline Dias Silveira null (telmasbl@marilia.unesp.br) on 2018-03-12T12:33:12Z (GMT) No. of bitstreams: 1 alves_apr_me_mar.pdf: 1530826 bytes, checksum: 4e440422d9aede67018a74246221c2e9 (MD5) / Made available in DSpace on 2018-03-12T12:33:12Z (GMT). No. of bitstreams: 1 alves_apr_me_mar.pdf: 1530826 bytes, checksum: 4e440422d9aede67018a74246221c2e9 (MD5) Previous issue date: 2018-02-21 / Não recebi financiamento / A inserção profissional de pessoas com deficiência intelectual tem sido marcada por contradições e desafios por tratar-se de uma temática recente, gerando dúvidas e anseios, daqueles que contratam, dos responsáveis pela formação e capacitação, bem como dos próprios sujeitos. Tendo em vista superar o histórico período em que este público foi excluído das atividades laborais, foram criadas medidas de ações afirmativas que asseguram a capacitação profissional e o acesso às empresas públicas e privadas, com destaque para a Lei de Cotas, que obriga empresas a partir de 100 funcionários a reservarem vagas às pessoas com deficiência. No entanto, apenas pequena parcela desta população, menos de 1%, tem vínculo formal de trabalho, e destes, o número é ainda menor quando se trata de pessoas com deficiência intelectual, denotando a necessidade de compreensão dessa realidade. O objetivo deste estudo foi analisar a percepção do sujeito com deficiência intelectual sobre sua participação no mercado de trabalho. Para isso, foram entrevistadas duas pessoas com deficiência intelectual, respectivamente, Caio e Laura, que narraram suas experiências familiares, no período escolar e no trabalho. Adotou-se o método História de Vida em que se prioriza o ponto de vista do entrevistado sem a preocupação com a veracidade dos fatos, mas com as concepções que o sujeito tem em relação a sua trajetória. As histórias foram analisadas e delineadas por meio de Temas Emergentes como: Formação para o trabalho e Preparação para o mercado de trabalho; Trabalho como princípio de humanização e Trabalho como princípio de desumanização; Deficiência como condição social e Deficiência como condição orgânica. Os temas emergentes foram interpretados à luz da teoria histórico-cultural, que compreende o homem, seja ele com deficiência ou não, como um sujeito formado pelas e nas relações com o outro. Nessa perspectiva de homem cultural e não apenas biológico, o trabalho é compreendido como princípio de humanização, inserção social e via de desenvolvimento de funções mais elaboradas. Os resultados foram apresentados em forma de textos narrativos e evidenciam o papel do trabalho no desenvolvimento dos sujeitos envolvidos que encontraram neste a realização profissional e pessoal com conquistas que estão além do aspecto financeiro, estendendo-se àquelas especificamente humanas. Esses sujeitos, contrariando o que é previsto para pessoas com deficiência intelectual, desenvolveram funções cognitivas e sociais que os permitiram ingressar e progredir no ambiente de trabalho. Nas trajetórias descritas destaca-se a constante intervenção da família na construção da identidade, assim como o que influenciou diretamente na concepção que sociedade e próprio sujeito tem sobre si. A formação em escolas regulares e cursos profissionalizantes possibilitou que atendessem às demandas do mercado de trabalho recebendo apoio e incentivo por parte dos empregadores, bem como possibilidades de progressão profissional. Mesmo diante de desafios e obstáculos, foram capazes de se desenvolver por meio das relações impostas, demonstrando que a pessoa com deficiência intelectual tem condições de atuar no mundo do trabalho, de refletir sobre as circunstâncias em que ocorre sua inserção, planejar e realizar-se profissionalmente. / The professional insertion of people with intellectual disabilities has been marked by contradictions and challenges because it is a recent issue, generating doubts and anxieties, those who hire, those responsible for training and training, as well as the subjects themselves. In order to overcome the historical period in which this public was excluded from work activities, affirmative action measures were created that ensure professional training and access to public and private companies, especially the Quota Law, which requires companies to of 100 employees to reserve places for disabled people. However, only a small part of this population, less than 1%, has a formal employment relationship, and of these, the number is even smaller when it comes to people with intellectual disabilities, denoting the need to understand this reality. The objective of this study was to analyze the perception of the subject with intellectual disability about their participation in the labor market. For that, two people with intellectual disabilities, respectively, Caio and Laura, who narrated their family experiences, during the school period and at work, were interviewed. The History of Life method was adopted in which the interviewee's point of view was prioritized without concern for the truth of the facts, but with the conceptions that the subject has in relation to his trajectory. The stories were analyzed and delineated through Emerging Issues such as: Training for work and Preparation for the job market; Work as a principle of humanization and work as a principle of alienation; Deficiency as a social condition and Disability as an organic condition. The emerging themes were interpreted in the light of historical-cultural theory, which comprises man, whether or not disabled, as a subject formed by and in relations with the other. In this perspective of cultural man and not only biological, the work is understood as a principle of humanization, social insertion and way of developing more elaborated functions. The results were presented in the form of narrative texts and evidence the role of work in the development of the subjects involved who found in this the professional and personal achievement with achievements that are beyond the financial aspect, extending to those specifically human. These subjects, contrary to what is predicted for people with intellectual disabilities, developed cognitive and social functions that allowed them to enter and progress in the work environment. In the described trajectories the constant intervention of the family in the construction of the identity, as well as what directly influenced in the conception that society and own subject has on itself stands out. Training in regular schools and vocational courses enabled them to meet the demands of the labor market, receiving support and encouragement from employers, as well as possibilities for career advancement. Even in the face of challenges and obstacles, they were able to develop through imposed relationships, demonstrating that the person with intellectual disabilities is able to work in the world of work, to reflect on the circumstances in which their insertion occurs, to plan and to perform professionally.

A presente dissertação refere-se a um estudo qualitativo sobre as percepções coletivas de educação da pessoa com deficiência intelectual de um grupo de representantes membros do Conselho Municipal de Educação (CME), de um município do Rio Grande do Sul. Seu objetivo foi investigar as relações entre as concepções de educação para a pessoa com deficiência intelectual e os Modelos de Deficiência, evidenciados nos discursos de membros do CME. Através do estudo histórico e da concepção de educação, é apresentado o conceito de Modelos Teóricos de Deficiência. Este conceito é utilizado para se compreender os pressupostos que os processos de inclusão sofrem ou sofreram. Esta pesquisa contou com um grupo focal, como instrumento de construção de dados, realizado com cinco membros do conselho. Os dados foram analisados, considerando a análise textual discursiva, proposta por Moraes e Galiazzi (2007), e a abordagem conceitual de Finkelstein (2011) sobre os modelos de deficiência. Com a análise do corpus, foi identificada a prevalência de dois Modelos de Deficiência, os quais surgiram como categorias para as discussões. Os Modelos categorizados destacam, primeiramente, o Modelo Social, que apresenta as concepções atuais de educação para a pessoa com DI e, posteriormente, o Modelo Médico, que remete aos aspectos cultural e historicamente presentes nas concepções e exemplificações enunciadas. Apesar de surgirem enunciados com exemplos positivos de processos de inclusão, foram as dificuldades que permaneceram mais tempo em discussão, indicando a necessidade de se construir novos domínios de conhecimento e ações para este assunto. Com este estudo, percebemos que os conceitos de inclusão de alunos com DI, ainda, estão em processo de constituição. O fato de encontrarmos alunos frequentando escolas comuns não significa que eles estejam de fato incluídos nos processos de ensino e aprendizagem, proporcionados pela escola. / Submitted by Marcelo Teixeira (mvteixeira@ucs.br) on 2014-06-06T15:52:57Z No. of bitstreams: 1 Dissertacao Ingrid Renata Lopes Augustin.pdf: 1490399 bytes, checksum: a045506926e4cc034c5bdc7b64ea4b8f (MD5) / Made available in DSpace on 2014-06-06T15:52:57Z (GMT). No. of bitstreams: 1 Dissertacao Ingrid Renata Lopes Augustin.pdf: 1490399 bytes, checksum: a045506926e4cc034c5bdc7b64ea4b8f (MD5) / This work refers to a qualitative study on collective perceptions of education for people with intellectual disabilities from a representing members group of the City Council of Education (CME) in a city from the state of Rio Grande do Sul. The objective was to investigate relationships between the concepts of education for people with intellectual disabilities and Models of disability, as evidenced in the speeches of members from CME. Through studying history and conception of education is presented the theoretical concept of models of disability. This concept is used to understand the assumptions that the processes of inclusion suffer or have suffered. This research has used as a tool for building data a focus group conducted with five board members. The data were analyzed considering the discursive textual analysis proposed by Moraes and Galiazzi (2007) and conceptual approach of Finkelstein (2011) on models of disability. With the analysis of the corpus was identified the prevalence of two models of disability which emerged as categories for discussions. Models categorized highlight first the Social Model, which presents the current concepts of education for people with ID, and later the Medical Model, which refers to cultural and historical aspects of the present concepts and examples listed. Despite statements arise with positive examples of processes of inclusion, the difficulties aspects were longer under discussion, indicating the need of building new areas of knowledge and actions in this matter. We realize that the concepts of inclusion of students with ID, are still in process of creation, however we find students attending regular schools, does not mean they are actually included in the teaching and learning process provided by the school.

Esta tese analisa a concepção de uma professora sobre o processo ensino-aprendizagem de uma criança com Síndrome de Down incluída em uma classe comum de Educação Infantil. Também foi objeto de estudo a busca, junto à referida professora, de procedimentos favoráveis ao desenvolvimento social, afetivo e cognitivo da aluna. Trata-se de uma pesquisa qualitativa, combinando um estudo de caso de cunho etnográfico com uma pesquisa-ação. Como procedimentos de coletas de dados foram utilizadas entrevistas abertas e semiestruturadas, observação participante e a autoscopia. A análise dos dados foi feita com base na análise de conteúdo, conforme proposta por Bardin (1977). Os dados obtidos, que vêm ao encontro com outros estudos, mostraram as dificuldades de implementação das políticas públicas de inclusão no âmbito do sistema educacional, em geral, e especificamente no caso da escola foco. O processo de inclusão torna-se complexo em virtude de variáveis como: despreparo dos professores em lidar com alunos com deficiência, ausência de conhecimento por parte de professores sobre flexibilização de estratégias de ensino aprendizagem e de organização escolar que não levam em conta a diversidade do alunado. Vimos que a presença da aluna na classe não garantia sua participação nas atividades e que seu processo de escolarização era dificultado pela falta de conhecimentos da professora sobre o desenvolvimento de sujeitos com deficiência intelectual e práticas pedagógicas alternativas. A partir da pesquisa-ação, constatamos mudanças positivas por parte da menina com relação ao desenvolvimento social e afetivo e que a professora, mesmo diante de limitações pedagógicas, contribuiu para esses avanços. Os dados revelaram que os conhecimentos pedagógicos que a professora demonstrava ter, com base nas atividades propostas para os alunos, estavam baseados no ensino tradicional, com uma concepção de educação infantil voltada para a prontidão para a alfabetização, evidenciando uma dificuldade em desenvolver o trabalho pedagógico numa perspectiva sócio-histórica. / This thesis analyses a teachers view about the teaching-learning process of a child withDown Syndrome Child included in a regular class of Early Education. It was also object of investigation the search, with the referred teacher, of procedures favorable to the social, affective and cognitive development of the student. It was a qualitative research, combining an ethnographic type case study with action-research. As data collection procedures were utilized open and semi-structured interviews, participant observation and autoscopy. The data analysis was undertaken based on the content analysis method, as proposed by Bardin (1977).The data obtained, that meet results of other studies, showed the difficulties in implementation of public policies of inclusion in the context of the educational system in general, and specifically in the case of the school that was the focus of this research. The inclusion process becomes complex due to variable such as: lack of preparation of the teachers to deal with students with disabilities, lack of knowledge on the part of the teachers about flexibilization of strategies for the teaching learning process, school organization that does not take into account the diversity of the students. We saw that the presence of the student in the class did not guaranteed her participation in the activities and that her process of education was damaged due to the lack of knowledge of the teacher about development of subjects with intellectual disability and alternative pedagogical practices.With the action-research, we noticed positive changes in the girls social and affective development and that the teacher, even faced with her pedagogical limitations, contributed to these advances. The data revealed that the pedagogical knowledge the teacher demonstrated to have, from the activities proposed for the students, was focused on traditional study methods, with a view of Early Education turned to alphabetization readiness, showing an difficulty to develop the pedagogical work within a social-historical perspective.

Esta tese procura compreender o processo de inclusão escolar dos alunos com deficiência intelectual a partir das suas histórias de vida e da percepção que eles têm da escola, considerando a relação entre deficiência, escola e construção do conhecimento. A pesquisa foi realizada em uma escola do campo, pertencente à rede pública estadual do município de Teresópolis no Rio de Janeiro. Objetivo principal foi compreender o processo de inclusão das pessoas com deficiência intelectual na escola regular a partir das histórias de cinco jovens inseridos na rede regular de ensino. Tratou-se de uma pesquisa qualitativa norteada pelo método da história de vida, segundo os pressupostos de Glat (2009), Augras (2009), Ferrarotti (1993) e outros. O referencial teórico adotado no estudo pautou-se na abordagem psicossocial da deficiência, ressaltando a relação que a pessoa com deficiência estabelece com o meio social e cultural do qual faz parte. A partir das histórias de vida dos sujeitos foi possível compreender como os jovens narram sua trajetória escolar, com destaque para as seguintes categorias: 1) trajetória escolar, 2) o papel da escola; 3) relação com os professores e as disciplinas; 4) relação com os colegas dentro e fora da escola; 5) perspectivas de futuro e transição para a vida adulta. O estudo revelou as contradições e a complexidade do processo de inclusão de alunos com deficiência intelectual em escolas comuns, particularmente quando se trata da inserção de jovens no segundo segmento do Ensino Fundamental e no Ensino Médio. Percebemos que mesmo após anos de discussões e pesquisas sobre a inclusão escolar de alunos com deficiência intelectual suas trajetórias ainda são marcadas pela cultura da incapacidade e do descrédito em relação ao que esses alunos podem fazer. As políticas de inclusão, embora bastante avançadas do ponto de vista de suas concepções teóricas, na prática não se traduzem na superação de práticas homogeneizadoras de ensino e organização do espaço escolar. Esperamos que esta pesquisa contribua significativamente para o contexto da educação brasileira, seja no âmbito da escola comum ou da Educação Especial, de maneira que as falas que aqui foram apresentadas ecoem e signifiquem um ponto de reflexão sobre como os sistemas educacionais e nós mesmos estamos compreendendo o processo de inclusão de alunos com deficiência e outras necessidades especiais na escola e na sociedade. / This thesis seeks to understand the process of inclusion of students with intellectual disabilities from the point of view of their life histories and the perception they have of the school, considering the relationship between disability, education and knowledge building. The research was conducted in a agricultural public school in Teresópolis, State of Rio de Janeiro. The main objective was to understand the process of inclusion of people with intellectual disabilities in regular schools from the life histories of five students people placed in regular education of middle and high school. We conducted a qualitative research based on the Life History method, according to the assumptions Glat (2009), Augras (2009), Ferrarotti (1993) and others. The theoretical framework adopted in the study was based on psychosocial approach of disability, emphasizing the relationship that the disabled person has with the social and cultural environment to which he belongs. From the life histories of the subjects it was possible to understand how young people talk about their school, with emphasis on the following categories: 1) school trajectory, 2) the role of school, 3) relationship with teachers and disciplines, 4) relationships with colleagues inside and outside of school, 5) future prospects and transition to adulthood. The study revealed the contradictions and complexity of the process of inclusion of students with intellectual disabilities in regular schools, particularly when it comes to the inclusion of young people in the middle and high school levels of Education. We realized that even after years of discussion and research on school inclusion of students with intellectual disabilities their trajectories are still marked by the culture of disability and disbelief about what these students can do. Inclusion policies, though well advanced in terms of their theoretical concepts, in practice do not result in overcoming the homogenizing practices of teaching and organization of the school. We hope this research will contribute significantly to the context of Brazilian education, either within the regular school or special education, so that the lines that have been submitted and mean echo a point of reflection on how the educational system and we ourselves are comprising the process of inclusion of students with disabilities and other special needs in school and society.

As práticas pedagógicas e processo de ensino e aprendizagem do aluno com deficiência intelectual no ensino comum são o objeto de estudo desta tese. Esta teve por finalidade analisar as estratégias pedagógicas e os suportes educacionais oferecidos para alunos com deficiência intelectual, refletir e elaborar, de forma colaborativa com a equipe pedagógica, ações educativas para a organização do processo de ensino e aprendizagem desse aluno. Para responder à questão inicial do estudo, participamos sistematicamente como pesquisadora do cotidiano escolar do aluno em sala de aula e em outros contextos da rotina das professoras, como reuniões de planejamento, estudos de caso e conselhos de classe. As interfaces metodológicas qualitativas adotadas foram o estudo de caso etnográfico para a 1 etapa e a pesquisa-ação colaborativa para a 2 etapa. Na 1 etapa, fomos a campo para conhecer os processos estabelecidos para a escolarização de três alunos com deficiência intelectual, em anos de escolaridade diferentes, e envolveu 15 profissionais do 1 segmento do ensino fundamental. A partir da análise de conteúdo dos registros do diário de campo, da observação participante, das entrevistas semiestruturadas e filmagens em sala de aula, organizamos as reflexões e análises sobre como é compreendida a deficiência intelectual, as relações que se estabelecem com a aprendizagem e as práticas pedagógicas que envolveram os três alunos. Na segunda etapa, fomos a campo para colaborar com seus atores a partir da proposta do ensino colaborativo, respaldadas pelo referencial histórico-cultural. As ações colaborativas junto às professoras de sala de aula e da sala de recursos multifuncionais (SRM) foram desenvolvidas tendo o aluno Ian como sujeito das reflexões e análises sobre o processo de ensino e aprendizagem. Como resultados do estudo observamos que a presença do aluno com deficiência intelectual na escola comum ainda é motivo de estranhamento. O formato da estrutura curricular indica o quanto é difícil garantir processos de ensino e aprendizagem para o aluno com deficiência intelectual. Apesar do perfil diferenciado na formação das professoras, dúvidas sobre como organizar o ensino para esse aluno eram comuns em seus relatos. A partir da colaboração estabelecida, na 2 etapa do estudo, entre as professoras especialistas (da SRM e pesquisadora) e as professoras de sala de aula, observamos essas ampliarem a iniciativa na organização/adequação de atividades, em suas áreas de conhecimento específicas, considerando a participação e forma pela qual o aluno poderia adquirir o conhecimento trabalhado. Nesse contexto, percebemos a relevância da complementaridade entre estratégias pedagógicas para garantir o ensino, a participação e a aprendizagem do aluno, tanto em sala de aula quanto na SRM. As práticas favoreceram o aluno na medida em que as condições de ensino, para sua aprendizagem, passaram a ser conhecidas e consideradas. A mediação planejada, intencional e desafiadora, em todos os ambientes da escola, foi fundamental para que compreendêssemos como organizar o ensino para a aprendizagem de Ian. Sob essas condições observamos Ian demonstrar sua capacidade para elaborar conceitos cotidianos e complexos, em diferentes áreas do currículo escolar. / This doctoral dissertation aims at examining the pedagogical strategies and educational support offered to students with intellectual disabilities. It also reflects and elaborates, collaboratively with the teaching staff, proper educational activities for the organization of the teaching and learning process of these types of students. To answer the first question we systematically participated as researcher in the students daily school routine in the classroom as well as in the teachers routines such as planning meetings, case studies and class councils. Methodology involved the ethnographic case study for Stage 1 and collaborative action research for the 2nd stage. In the first stage we went to the field to understand the types of processes used for schooling the three students with intellectual disabilities in different school years. This involved 15 professionals from the 1st segment of elementary school. From the content analysis of the records in the field journal, and the participants observation, in semi-structured interviews as well as classroom videotaping we were able to organize thoughts and analysis on intellectual disability and how it is understood. We also took a look at the relationships established with learning and the pedagogical practices involving the three students. In the second stage, we went to the field to collaborate with the participants starting with the education collaborative proposal, which is backed through historical and cultural references. The collaborative actions that the teachers have in the classroom as well as in the multifunctional resource room (SRM) were developed with a student named Ian who was the subject of reflections and insights on the process of teaching and learning. From the results of the study we observed that the presence of students with intellectual disabilities in regular schools is still a cause for estrangement. The format of the curriculum indicates how difficult it is to ensure teaching and learning processes for students with intellectual disabilities. Despite the differential profile in teacher training, questions about how to organize the teaching of that student were common in their accounts. With the collaboration established in the 2nd stage of the study, between the teachers in the classroom and specialists (the SRM and researcher) we observed that this expanded the initiative in the organization and activities in their specific areas of knowledge, considering participation and how the student could acquire this knowledge which was worked on. In this context, we realize the importance of complementarily teaching strategies to ensure teaching, participation, and student learning both in the classroom and in the SRM. These practices favor the student as teaching conditions for his learning came to be known and considered. The mediation which was planned purposefully and challenging for all of the school environments was a keystone for us to understand how to organize teaching for Ians learning. Under these conditions we observed Ian demonstrating his ability to produce complex and everyday concepts in different areas of the school curriculum.

Instituto de Aplicação Fernando Rodrigues da Silveira / A presente pesquisa tem por objetivo analisar a interação de alunos com deficiência intelectual com a linguagem escrita num ambiente virtual de aprendizagem desenvolvido com a finalidade de implementar atividades de letramento. Baseando-se nos fundamentos da teoria sócio-histórica sobre cultura, aprendizagem e desenvolvimento, o presente estudo almeja trazer contribuições para os estudos sobre alfabetização e letramento de pessoas com deficiência intelectual, com a utilização de instrumentos culturais de aprendizagem da cibercultura. Foram seguidos os princípios da abordagem qualitativa, tendo em vista a necessidade de observar e reconhecer os sujeitos em sua individualidade, considerando-os em seu meio sócio-cultural. O referencial metodológico utilizado é a pesquisa-ação crítico-colaborativa. Os resultados do estudo foram organizados em quatro categorias: histórico escolar relatos de sobrevivência; a proteção das famílias; os professores e a construção de uma prática; o uso da tecnologia possibilidades de resgate cultural. As duas primeiras buscam analisar fatores relacionados ao histórico escolar e familiar, que forneçam indícios para a compreensão da constituição dos sujeitos (alunos) como adolescentes ou jovens que não sabem ler e as duas últimas discutem a construção das práticas de letramento, no que diz respeito ao envolvimento dos professores e às possibilidades de aproximação dos alunos com deficiência intelectual à cultura, proporcionadas pelo uso do computador. O ambiente virtual de aprendizagem possibilitou o desenvolvimento de uma prática pedagógica voltada para atender às necessidades educacionais especiais destes alunos e compreender as características de seu processo de internalização da escrita, a partir da mediação do instrumento cultural de aprendizagem e da ação do professor. / This research aims to analyze the interaction of students with intellectual disability with written language in a virtual learning environment developed for the purpose of implementing literacy activities. Based on the fundamentals of socio-historical theory about culture, learning and development, the present study aims to bring contributions to the study of literacy of people with intellectual disabilities, with the use of cultural learning instruments of cyberculture. We followed the principles of qualitative research, in view of the need to observe and recognize the subjects in their individuality, considering them in their socio-cultural environment. The methodological framework used is critical and collaborative action research. The results of the study were organized into four categories: school history - stories of survival; protection families, teachers and the construction of a practice, the use of technology - possibilities for cultural rescue. The first two seek to analyze factors related to family and school records that provide clues to understanding the constitution of the subjects (students) as youth who "can not read" and the last two discuss the construction of literacy practices, concerning the involvement of teachers and the possibilities of approaching students with intellectual disabilities to culture, provided by the use of the computer. The virtual learning environment enabled the development of a pedagogical practice to meet the special educational needs of these students and understand the characteristics of their writing internalization process, from the mediation of cultural learning instrument and teacher's action.