Delaktighet är ett multidimensionellt fenomen som gynnas av ett flertal faktorer, främst positiva personegenskaper och underlättande faktorer i miljön. Syftet med studien var att undersöka hur vårdare på en gruppbostad för vuxna personer med lindrig utvecklingsstörning uppfattar samt menar sig skapa förutsättningar för brukarnas delaktighet i fritid, mathållning, städ/tvätt och ekonomi. Studien genomfördes med hjälp av 6 individuella intervjuer med halvstrukturerade frågor. Resultatet visade att vårdarna uppfattar brukarnas delaktighet i sin fritid som stor, då självbestämmandet och engagemanget är stort. I mathållningen har brukarna självbestämmande, men de väljer att inte vara delaktiga. Brukarna är delaktiga i städ/tvätt, men engagemanget saknas och i ekonomin har brukarna en mindre delaktighet, på grund av att de har god man. Vårdarna skapar förutsättningar för delaktighet genom att ge brukarna valmöjligheter. Undersökningen har förhoppningsvis bidragit med kunskap för personal som arbetar med personer med funktionshinder.

Psychopharmacological and behavioural interventions are used to treat challenging behaviours (e.g., self-injury, aggression, stereotypy, bizarre vocalizations) in individuals with intellectual disability (ID), often in combination. However, little is known about the behavioural mechanisms underlying psychopharmacological treatment. Establishing a better understanding of these mechanisms could contribute to improving treatment efficacy. For this study, I conducted repeated functional analyses using single-subject experimental designs to assess the impact of naturally varying dosages of psychotropic medications on behaviour function. Four individuals with ID who engaged in challenging behaviour and were undergoing psychotropic medication changes participated. Medication impact across two topographies for one participant, and three topographies for another participant were assessed, for a total of seven cases. For Analysis 1, I calculated standardized mean differences between baseline and final drug administration phases to estimate the overall effect of medication. I used this information to examine whether response rate following drug administration was related to response rate during baseline, referred to as rate-dependency. Rate-dependency was not observed. Analysis 2 explored the relation between psychotropic medications and behaviour function identified through functional analyses. Challenging behaviour was the dependent variable, while functional analysis conditions and psychotropic medication level served as independent variables. The latter was a quasi-experimental variable given participants’ psychiatric team prescribed changes independent of the researchers. Behaviour function correspondence, defined as no function change after a medication manipulation, was observed across 14 of the 21 medication manipulations (67%). / October 2015

Non-syndromic intellectual disability (NS-ID) is a widespread neurodevelopmental disorder in which the major phenotypic manifestation is low IQ. Given the known genetic overlaps between the two conditions, it was hypothesize that autosomal recessive NS-ID (NS-ARID) genes may also play a role in autism. In this thesis, autism probands with CNVs overlapping NS-ARID genes were screened for additional mutations by sequencing. In addition, TRAPPC9 was identified as a novel cause of NS-ARID in two unrelated consanguineous families. TRAPPC9 (NIBP) is believed to function in the NF-kB pathway and the TRAPP complex. Multiple probands with developmental delays and CNVs overlapping TRAPPC9 were also identified. A potential mechanism for the CNV-related phenotype is that TRAPPC9 may be partially paternally imprinted in brain, and overlapping CNVs may cause loss of regulation. Identification of genes for autism and ID will translate into earlier diagnosis and better clinical care for this population in the future.

Non-syndromic intellectual disability (NS-ID) is a widespread neurodevelopmental disorder in which the major phenotypic manifestation is low IQ. Given the known genetic overlaps between the two conditions, it was hypothesize that autosomal recessive NS-ID (NS-ARID) genes may also play a role in autism. In this thesis, autism probands with CNVs overlapping NS-ARID genes were screened for additional mutations by sequencing. In addition, TRAPPC9 was identified as a novel cause of NS-ARID in two unrelated consanguineous families. TRAPPC9 (NIBP) is believed to function in the NF-kB pathway and the TRAPP complex. Multiple probands with developmental delays and CNVs overlapping TRAPPC9 were also identified. A potential mechanism for the CNV-related phenotype is that TRAPPC9 may be partially paternally imprinted in brain, and overlapping CNVs may cause loss of regulation. Identification of genes for autism and ID will translate into earlier diagnosis and better clinical care for this population in the future.

Background: The growing population of older adults with intellectual disabilities is likely to experience secondary disabilities that affect well-being. Despite the established importance of mobility in the general population, there is little evidence of a scientific base on mobility limitations for people with intellectual disabilities. Objectives: The aim of this study was to better understand mobility limitations in adults with intellectual disabilities, age 45 and over, by describing the prevalence and severity of mobility limitations and determining the association with living in a high support setting. Methods: A systematic review of published literature on mobility limitations among adults with intellectual disabilities was conducted using a pre-determined search and extraction strategies. A cross-sectional study was then conducted among a representative sample of adults, age 45 and over with intellectual disabilities in South Eastern Ontario. Data was collected through standardized proxy response telephone surveys and analyzed descriptively to determine the prevalence and severity of mobility limitations in this population. A multivariate logistic regression model was then used to examine the association between mobility limitations and residential status. Results: The systematic review identified 32 publications that met all inclusion criteria. Publications were generally not focused on mobility, cross-sectional in design and few investigators addressed key methodological features in their report. Original data was collected for 128 older adults with intellectual disabilities. The prevalence of mobility limitations varied according to the definition employed. Using comparable definitions, this prevalence was higher than what is seen in the general Canadian population. The prevalence of mobility limitations was not found to increase with age but was greater in females than males. People with intellectual disabilities and mobility limitations had 3.6 times greater odds of living in high support residential settings than those without mobility limitations. This difference was statistically significant. Conclusion: Past epidemiological research on mobility limitations for people with intellectual disabilities is of poor quality. In addressing these limitations, this study found that mobility limitations are common among people with intellectual disabilities and are associated with meaningful outcomes, such as the place in which a person lives. / Thesis (Master, Community Health & Epidemiology) -- Queen's University, 2007-08-23 22:56:48.77

Background: Compared to the general population, individuals with intellectual disabilities have a higher prevalence of health problems, including psychiatric and/or behavioural conditions (dual diagnosis). Research suggests that the proportion of persons with intellectual disabilities who have a dual diagnosis ranges from 14% to 64% depending on the population studied and the diagnostic criteria used. However, there is little population-based information in Canada about people with such a dual diagnosis. Objectives: The aims of this study were to estimate the prevalence of psychiatric or behavioural conditions among adults with an intellectual disability in Canada, and to estimate the use of mental health services among these individuals. Methods: This study was a secondary analysis of two cross-sectional, population-based surveys (2005 Canadian Community Health Survey: CCHS and 2006 Participation and Activity Limitation Survey: PALS), and the 2008/09 Survey of Adults with Intellectual Disabilities in South Eastern Ontario: SAID-SEO. Relevant variables were identified in the surveys to answer the study objectives. Confidence intervals were provided for all estimates and the results were compared within subgroups for each survey, as well as between surveys. Results: The proportion of Canadian adults with an intellectual disability is 0.2% according to the CCHS and 0.5% according to the PALS. The proportion of individuals with a dual diagnosis was found to be 31% in the CCHS, 44% in the PALS, and 33% in the SAID-SEO. These prevalence estimates fall within the ranges reported in the literature. Lastly, the majority of adults with a dual diagnosis reported using health services in the past year. Conclusion: According to the three surveys examined (CCHS, PALS, SAID-SEO), psychiatric and behavioural conditions are present in about a third of the individuals with intellectual disabilities, which is in accordance with published literature. However, the estimates of the prevalence of intellectual disabilities in the CCHS and PALS were considerably lower when compared to the literature. Among the surveys, the PALS presented the highest quality of data regarding the population with a dual diagnosis. The surveys found that a majority of individuals with a dual diagnosis access some form of health services at least once a year. / Thesis (Master, Community Health & Epidemiology) -- Queen's University, 2009-10-28 00:15:54.488

In this qualitative study the experience of a young woman with an intellectual disability (ID) auditing a university course was explored from multiple perspectives. This young woman audited a curriculum course in a one-year, after-degree Teacher Education program at an Ontario university. The purpose of this study was to explore the meaning of this experience for the student, her classmates, and her curriculum course instructor. Data were collected at the University from observations of the curriculum course and from interviews with the participants. As well, observations were made at a community-based program that prepares adults with ID to take part in inclusive post-secondary education (IPSE) to provide a description of the preparation of these adults for university experiences. The focal participant attended this program for four months prior to auditing the University course. Data from interviews with the classmates and the course instructor elicited both positive and negative responses concerning their experiences in the inclusive class. Positive responses include seeing inclusion in practice and coming to know the focal participant on a personal level. Negative responses concern whether or not a curriculum class was the right fit for the focal participant. Interview data from the focal participant show that she overwhelmingly enjoyed her experience auditing the Education course. She saw the interaction with same-age peers as a chance to socialize with these peers and as an opportunity to learn about being independent. / Thesis (Master, Education) -- Queen's University, 2010-08-20 15:53:32.108

Notwithstanding the prominent focus on inclusion in the discourse of special education, students with significant intellectual disabilities in North America continue to receive a part of their education in segregated contexts (G. L. Porter, 2008; Schwartz, Mactavish & Lutfiyya, 2006; P. Smith, 2010). This situation creates an interesting and perplexing anomaly that I attempt to reconcile through an examination of the discursive conceptualizations of these students in Canadian introductory special education textbooks. My study is framed within (a) the academic field of disability studies, which re-imagines disability using new perspectives (Linton, 1998; Oliver, 1996), and (b) new philosophical concepts of “personhood”, which critique traditional definitions of personhood based on intellectual ability (Carlson, 2010; Carlson & Kittay, 2009; Nussbaum, 2006). Situated within social constructionism and discourse theory (Laclau & Mouffe, 2001), this analysis examines how students with significant intellectual disabilities are depicted in these textbooks. The language used in portraying these students suggests a discourse of individual pathology, medicalization and professionalization, distancing students with significant intellectual disabilities from other students because of their perceived lack of abilities, needs and behaviours. This discourse relies heavily on traditional understandings of people with significant intellectual disabilities as lacking in value. There is little discursive evidence to suggest that these students are presented in ways that challenge either historical or modern conceptualizations.

The overall aim of this doctoral thesis was to explore an assessment of participation according to the International Classification of Functioning, Disability and Health (ICF) in people with a mild intellectual disability. Study I used secondary data and explored how participation can be assessed. Study II-IV explored participation empirically regarding 68 everyday activities from all nine life domains according to the ICF. Study II explored assessment of self-rated participation by investigating to what extent perceived ability, actual performance and perceived importance correlated. Study III-IV explored the contribution of perceived importance to an assessment of participation; study III by investigating frequencies of everyday activities regarding performance and importance separately as well as regarding combined measures of performance and perceived importance, and study IV by comparing proxy ratings with self-rated measures regarding ability and measures of participation. Study III also correlated measures of participation with a single-item measure of subjective general well-being and study II and IV investigated internal consistency in terms of Cronbach’s alpha. Study II and III included 55 and 69 individuals with intellectual disability respectively. Study IV included 40 individuals with intellectual disability and 40 proxy persons. The informants from the target group were partly the same. Study II and IV supported the suggestions from study I that participation should be assessed by self-ratings and study II found that this is an appropriate method also to people with a mild intellectual disability. Study III showed that participation is related to subjective well-being. Study III-IV found somewhat different results if measuring participation as performance solely or as a combination of performance and perceived importance. Overall, the results of the thesis suggest that performance solely might be sufficient to assess participation at a group level but in a clinical context, when the knowledge of a certain individual is of interest, the perceived aspect of involvement is necessary to include in an assessment of participation.

Therapeutic and support services provision for children with dual intellectual disability and emotional and/or behavioural difficulties was evaluated in the present study. The participants were parents of children with dual disabilities, aged between 5 and 12 and attending mainstream schools in Christchurch, New Zealand, and managers of service providers for the target group. Parents and service managers partook in semi-structured interviews designed to obtain information about patterns of service provision. The results of the present study indicate that parents and managers had similar perceptions of the extent to which services in Christchurch currently met the needs of the target children and families. Additionally, the study functioned as a pilot of the design and methods for a potential future project; therefore parent participants also completed two checklists estimating their child’s adaptive functioning and the type and severity of their emotional and/or behavioural difficulties.