Särskolan är idag en skolform för elever med intellektuell funktionsnedsättning. Syftet med denna studie är att få ökad kunskap om och fördjupad förståelse för hur tillhörighet till särskolan kan upplevas och påverka identitetsutveckling hos elever med lindrig utvecklingsstörning. Studien är kvalitativ med hermeneutisk ansats och bygger på semi-strukturerade intervjuer med elever i gymnasiesärskolan. I studien framkommer att eleverna i gymnasiesärskolan upplever tillhörigheten tudelat. Samtidigt som särskolan upplevs som en trivsam och trygg miljö, positiv för social delaktighet och kunskapsmässig utveckling upplever de en skam och sorg över tillhörigheten som de därmed försöker att hemlighålla. Det framkommer även att tillhörigheten till särskolan kan påverka identitetsutvecklingen både positivt och negativt. Då den genom att vara anpassad efter elevens förutsättningar kan bidra till en positiv självbild kan den också bidra till identitetsförvirring då eleven för omgivningen hemlighåller tillhörigheten och därmed inte fullt ut kan ta till sig identiteten som elev i särskolan.

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.

I am a community support worker who supports people with intellectual disabilities to live full lives with dignity in the community. This is a role that can trace its heritage to the 1980s when large institutions in BC closed in favour of community group homes. Current scholarship suggests that the requisite full lives promised at the time the institutions closed have not materialized in the years since. Further, this scholarship suggests that it is the community support worker who has failed to deliver on important social goals. As a worker I can attest that I do at times feel unsettled in my work, like my mere presence is problematic, as if I fail by showing up. Based on the premise that I can learn about the worker of present by looking at how she was first imagined, in this genealogical study I explore how the community support worker of the 1980s was produced in archival documents of groups involved in the development of community group homes after the closure of Woodlands in New Westminster, BC. My findings suggest that the community support worker role served many interests, and that her purpose was not solely trained to the social needs of the people she supported. A confluence of economic rationalities, family concerns, and regulatory demands shaped her as an invisible domestic idealized as a temporary solution to a problem that was expected to dissipate through the increased independence of people with disabilities, and the participation of a welcoming community that steps up to help when needed. The ongoing presence of the worker calls into question her original mandate. / Graduate / 0630 / 0452 / pcambiazo@telus.net

This study focuses on parental future planning for adults with intellectual disabilities. In recent years, the need for parents to engage in future planning for their offspring with intellectual disabilities has been increasingly emphasized. Within the literature, a number of approaches to future planning have been identified, including both formalized approaches (i.e., creating clear, explicit, and largely unchanging plans for the future of the individual with an intellectual disability) and more informal approaches (i.e., designating a person or a group of people to oversee the well-being of the individual with an intellectual disability without necessarily providing specific guidelines relating to the individual’s future care). Despite growing understanding that parents may approach developing future plans in different ways, to date, research on future planning has largely been focused on exploring formalized, concrete approaches to future planning. Using an Interpretive Description methodology, in which semi-structured interviews were conducted with 28 parents of adults with intellectual disabilities, this study sought to gain a greater understanding of parental future planning in real life practice in the province of British Columbia. Results revealed that while the parents in this study often utilized several future planning approaches -- both formal and informal -- when engaged in planning, they could be classified into two broad categories: Concrete Planners and Informal Planners. In addition, the results of this study also highlight key factors that may distinguish between parents who plan more formally and parents who plan more informally. Overall, these result highlight important avenues for future research and policy and practice; which, ultimately, may lead to important changes regarding how best to support aging parents of adult children with intellectual disabilities as they face the challenging task of planning for the post-parental care phase of their adult child’s life. / Graduate / megan.caines@gmail.com

Individualised needs based approaches are increasingly being utilised to fund disability support services. Frequently, standardised assessments such as adaptive behaviour scales and, more recently, measures of support needs are used for determining level of need. The aim of this thesis is to understand the relationship between adaptive behaviours and support needs and to investigate factors that impact functional capacity and need for supports for individuals with an intellectual disability. Although a conceptually attractive approach to assessment, concern exists regarding the adequacy of the theoretical framework for guiding the development of support needs instruments. Though possessing theoretical similarities, adaptive behaviour and support needs scales are considered to measure different, albeit related constructs, prompting investigation into the nature of the relationship and the structure of the support needs construct. Accordingly, in Study 1 the Supports Intensity Scale (SIS), the Adaptive Behaviour Scale–Residential and Community (ABS-RC:2), and the Inventory for Client and Agency Planning (ICAP) were used to examine this relationship (N = 80). Dimensionality of the SIS (Section 1) was examined in reference to the three areas of conceptual, social, and practical skills, considered as comprising the adaptive behaviour construct. Factor analysis offered support for measurement of a common underlying construct. When considered in terms of the three adaptive behaviour skill areas, the support needs construct related predominantly to conceptual skills. Unlike adaptive behaviour scales, little is reported about the properties of support needs measures or factors that impact on an individual’s need for supports. Study 2 examined factors likely to influence adaptive behaviours and need for supports; in particular, the presence of coexisting disabilities. Using a measure of adaptive behaviour (i.e., ICAP) and two support needs scales (i.e., SIS and the Service Need Assessment Profile, SNAP), the extent to which adaptive and challenging behaviours and support needs (including medical) were impacted by the number and severity of disabilities was examined (N = 83). Results showed adaptive behaviours and support needs (including medical) were meaningfully related to the number and severity of disabilities present, whereas this was not so for challenging behaviours. Profiles for challenging behaviour measures did not support a linear association with number and severity of additional disabilities, raising the possibility that the profiles were influenced more by the nature of the additional disabilities present. Study 3 investigated the impact of the nature of the additional disabilities present on adaptive and challenging behaviours, support and medical needs using the same instruments utilised in Study 2. Each scale discriminated skills and needs associated with the presence of additional physical and speech disabilities. The support needs subscales of SNAP and SIS were more sensitive to the needs of individuals with coexisting neurological and sensory disabilities. SNAP was the only instrument to identify unique needs associated with the presence of a psychiatric disability but SIS was the only instrument to discriminate needs associated with the presence of a vision disability. Underlying this finding may be the importance of the person-environment interaction intrinsic to contemporary models of disability and support approach to assessment. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1349602 / Thesis (Ph.D.) -- University of Adelaide, School of Psychology, 2009

This study adopted an ethnographic approach to examine the role of the Registered Nurse (RN) in the intellectual disability sector. The research setting (The Centre) is a residential facility for clients with intellectual disability in the northern suburbs of Adelaide that opened in 1971 and was similar to a hospital with the same hierarchy of nursing. Mental deficiency nurse training was conducted there until the 1990s but that qualification is no longer recognised. The Centre is under the umbrella of a large state disability organisation that is in the process of moving clients of the service from institutions (the Centre) to community living options such as group homes. The cessation of mental deficiency nurse training and the introduction of deinstitutionalisation were considered to impact on client health and in the late 1990s a 24 hour nursing service was commenced. There was strong anecdotal evidence the service should be evaluated. A review of the literature found some research had been conducted in overseas countries with a focus on deinstitutionalisation but with a paucity of interest in the role of the RN, particularly in Australia. Ethnography, first used in anthropology as a way of describing different cultures, was chosen as the research methodology because the researcher wanted to discover how the culture influenced the role of the RN. The researcher is an RN employed in the area. As an ethnographer and participant observer, the researcher became the data collection instrument. The entire culture is considered to be the sample in ethnography and data took the form of hundreds of hours of field note entries and interview transcripts. Following analysis, the findings were presented in themes answering the research question which was in two parts. The first ‘from the perspective of the nurse, client and other health care professionals, what constitutes intellectual disability nursing?’ and secondly ‘what are the every day rituals, norms and patterns within the disability culture that shape and influence disability nursing for the Registered Nurse?’. ‘Caring for the client who is institutionalised’, ‘The RN in the disability sector having certain qualities’, ‘Working within a different paradigm’, ‘Having to assume responsibility for large numbers of unregulated workers’, ‘Having to work alongside many professional groups’ and ‘Having different educational needs’ are themes which describe the role. Themes describe the diversity of the role and in describing the registered intellectual disability nurse as ‘different’ the role is compared with that of the nurse in other settings. The current research revealed there is a need for more health related education for unregulated workers and specific intellectual disability education for registered and enrolled nurses. Themes that answer the second part of the research question are ‘hierarchical structure’, ‘the Registered Nurse's position’ and ‘role confusion’. The non-nursing management at the top of the hierarchical ladder was found to significantly limit the role of the RN who was afforded no opportunity for leadership. Confusion over the RN's role and indeed individual workers' roles was observed at all levels. Findings suggest much stronger nursing leadership is required to provide advocacy and holistic care for the client and education for the carer. An outcome of the current research was the development of a model for intellectual disability nursing (see Table 8-1).

Individualised needs based approaches are increasingly being utilised to fund disability support services. Frequently, standardised assessments such as adaptive behaviour scales and, more recently, measures of support needs are used for determining level of need. The aim of this thesis is to understand the relationship between adaptive behaviours and support needs and to investigate factors that impact functional capacity and need for supports for individuals with an intellectual disability. Although a conceptually attractive approach to assessment, concern exists regarding the adequacy of the theoretical framework for guiding the development of support needs instruments. Though possessing theoretical similarities, adaptive behaviour and support needs scales are considered to measure different, albeit related constructs, prompting investigation into the nature of the relationship and the structure of the support needs construct. Accordingly, in Study 1 the Supports Intensity Scale (SIS), the Adaptive Behaviour Scale–Residential and Community (ABS-RC:2), and the Inventory for Client and Agency Planning (ICAP) were used to examine this relationship (N = 80). Dimensionality of the SIS (Section 1) was examined in reference to the three areas of conceptual, social, and practical skills, considered as comprising the adaptive behaviour construct. Factor analysis offered support for measurement of a common underlying construct. When considered in terms of the three adaptive behaviour skill areas, the support needs construct related predominantly to conceptual skills. Unlike adaptive behaviour scales, little is reported about the properties of support needs measures or factors that impact on an individual’s need for supports. Study 2 examined factors likely to influence adaptive behaviours and need for supports; in particular, the presence of coexisting disabilities. Using a measure of adaptive behaviour (i.e., ICAP) and two support needs scales (i.e., SIS and the Service Need Assessment Profile, SNAP), the extent to which adaptive and challenging behaviours and support needs (including medical) were impacted by the number and severity of disabilities was examined (N = 83). Results showed adaptive behaviours and support needs (including medical) were meaningfully related to the number and severity of disabilities present, whereas this was not so for challenging behaviours. Profiles for challenging behaviour measures did not support a linear association with number and severity of additional disabilities, raising the possibility that the profiles were influenced more by the nature of the additional disabilities present. Study 3 investigated the impact of the nature of the additional disabilities present on adaptive and challenging behaviours, support and medical needs using the same instruments utilised in Study 2. Each scale discriminated skills and needs associated with the presence of additional physical and speech disabilities. The support needs subscales of SNAP and SIS were more sensitive to the needs of individuals with coexisting neurological and sensory disabilities. SNAP was the only instrument to identify unique needs associated with the presence of a psychiatric disability but SIS was the only instrument to discriminate needs associated with the presence of a vision disability. Underlying this finding may be the importance of the person-environment interaction intrinsic to contemporary models of disability and support approach to assessment. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1349602 / Thesis (Ph.D.) -- University of Adelaide, School of Psychology, 2009

To date people with severe and profound intellectual disability have been excluded from participatory research projects. This is often due to complex ethical issues and to concerns about how they would make themselves heard or understood. Razack (1993) suggests that the moral obligation to hear such contributions lies with the listener. This study constitutes an investigation of how such listening occurs with contributors who are labeled as having a severe or profound intellectual disability. Human service practitioners who work closely with, and who constantly find themselves listening to and interpreting for, people with severe and profound intellectual disability were recruited for the study. Five focus groups were conducted with these workers. The study revealed that personal values often underpin the various strategies practitioners employed when listening to people with severe disability. Elements like believing the person has something to say; having the time and perseverance to listen; sharing some common interests/rapport with the person and; being able to minimise the many barriers — physical environment, people, self-attitude — that are instrumental in blocking a listener’s capacity. A model for listening to individuals with severe intellectual disability for the proposes of hearing their story is proposed and implications for further research, policy and practice, and education and training are presented.

People with intellectual disability, as a category, are an especially disadvantage group, as they often are in need of interventions from the society throughout the whole life. In Brazil, work is considered a human right and important for the construction of the social and personal identity. There is a law, called the Quota Law, which demands all companies with 100 employees or more, to employ between 2 – 5 % people with disabilities. This law aims to ensure this social right for the target group. However, several studies are pointing at the timid result the law has provided concerning employment for people with intellectual disabilities. This study intends to detect barriers, important aspects and possible solutions in order to facilitate for people with intellectual disabilities to enter the labor market using the Quota Law as a starting point.      The study has an inductive and qualitative approach and the data is collected by semi-structured interviews. The respondents are all related to issues of people with intellectual disabilities and their integration on the labor market. Within the sample there are; persons with intellectual disabilities who have an employment on the labor market or have a desire to obtain a competitive employment; relatives to persons with intellectual disabilities; professionals working in two different non-government organizations (NGO´s) in Recife that provides vocational courses for the target group and finally; respondents working at public ministries who act in the area of integration of people with disabilities on the labor market.      The result shows that the main barriers for people with intellectual disabilities in order to reach the labor market were considered; prejudices and discrimination of persons with intellectual disability; the lack of qualification of people with intellectual disability in combination of high qualification requirements by the employers; the lack of support in order to compensate for intellectual disabilities; that the work environments are not customized for the target group and; fear of loosing the Benefit of Continuous Support of Social Assistance (BPC).      Theories of perspectives on intellectual disabilities are used to understand current interventions in order to integrate people with intellectual disabilities on the labor market. One conclusion is that there is a need for further efforts towards the target group in order to really obtain an effective integration for people with intellectual disability on the labor market.

Background: The tendency for accepting and/or behaving under the influence of other’s suggestion in an interview context can be described as ‘interrogative suggestibility’ (IS). The Gudjonsson Suggestibility Scales (GSS) are used within many clinical and forensic settings as a tool to gauge the reliability of information obtained during interviews. Concerns exist regarding the suitability of these scales for use amongst the population of people with an intellectual disability (ID). Previous research concludes that the GSS may disadvantage people with an ID, indicating a greater degree of IS than is actually the case. Method: The following systematic review of several electronic databases explores research to date (and what conclusions have been drawn) in relation to the degree to which cognitive variables relate to scores obtained on the GSS by people with an ID. The subsequent empirical study makes adaptations (e.g. supplementing verbal information with visuals) to the GSS in an attempt to improve its suitability for use with people with an ID. In addition, a number of cognitive variables are measured (e.g. verbal and visual memory) and their relationship with scores on the scales explored. Results: The adaptations to the GSS did not result in a significant change to scores on the GSS. It was found that visual memory ability may contribute to whether visual information effects scores on the GSS following adaptations. Whilst tentative conclusions are drawn regarding the role of memory ability, the systematic review of research was limited in it’s clarification of the role of cognitive variables in IS. This is likely due to limited scope and quality of existing research. Conclusion: Both the empirical study and the systematic review highlight the complexity of the field of interrogative suggestibility, particularly amongst people with an ID.