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.

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

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).

Thesis (doctoral)--Universität Bern, 1916. / Includes bibliographical references (p. [5-7]).

This thesis is written from a practitioner-researcher perspective and explores leadership within Learning Disability Theatres, focussing on a series of moments captured within the education and outreach programme of DIY Theatre Company, Salford, UK. The researcher presents a dialogical view of research within which knowledge-production is viewed as dynamic and processual rather than mobilised by the search for a single truth or one prescriptive method of working. Emerging from research undertaken as political activity the thesis engages with, and attempts to disrupt, dominant, normative agendas of power and knowledge which limit our notions of leadership and result in people with learning disabilities all too often being viewed as too disabled to carry out leadership roles. The thesis highlights the challenges and potential for research undertaken collaboratively with disabled co-leaders to be viewed through frameworks of Applied Theatre, Critical Disability Studies and Critical Leadership Studies and articulates a methodology-in-the-making with the potential to inform future research, practice and policy within all three disciplines. Methods include observations, arts-based Inclusive Research and interviews. Descriptions of moments of practice, written from a phenomenological perspective, offer insights into the highly relational nature of leadership practice in Learning Disability Theatres. The researcher suggests it is in such moments of practice, only visible and present in the making that new ways of thinking about and carrying out leadership in participatory theatre can be located. A critical and relational perspective opens up alternative ways of negotiating and describing leadership by and with performers and theatre-makers with learning disabilities. The term workshop-in-the-making has been coined to introduce a view of the drama workshop as an extension of improvised artistic practice within which improvisers work with light structuring, are heedful, generous, able to accept offers and to respond in the moment. Development and research of dialogical leadership are political acts which challenge normative, ableist perspectives and offer significant opportunities for development of practice, research and policy within and beyond Learning Disability Theatres. This thesis does not seek to define a single model of leadership, but highlights the value of a relational perspective in exploring the nuances, shifts and complexities of roles within leadership-in-the-making and, as a result, reveals the rich range of leadership practices often masked by more hierarchical approaches.

Aims: Parents of children with intellectual and developmental disabilities tend to illustrate and report higher levels of stress and lower wellbeing than parents of typically developing children. This thesis aimed to explore the aspects of this relationship between parental wellbeing and raising a child with heterogeneous intellectual and developmental disability. Firstly, the thesis aimed to review the current literature and evidence base for mindfulness-based group and individual interventions and their effect on psychological outcomes for parents of children with intellectual and developmental disabilities. Secondly, a research study aimed to explore the role of overall parental locus of control and particular sub-domains of locus of control on parent reported wellbeing. Furthermore, the role of child compliant and social behaviour, child problem behaviour, diagnostic groups, level of functioning, and demographic variables were explored. Method: A systematic review of the literature was conducted to address the first aim of this thesis. Within the research study, a single sample of parents and family carers (n = 114) completed an online anonymous survey consisting of demographic information and three self-report measures; a modified version of the Parental Locus of Control Scale, the Warwick-Edinburgh Mental Wellbeing Scale, and the Nisonger Child Behaviour Rating Form. Results: The systematic review illustrated that mindfulness-based interventions appear to have a significant effect on a number of parent psychological outcomes; such as wellbeing, stress, mental health, compassion, and mindfulness. A further four papers indicated a significant impact on child behavioural outcomes from parental mindfulness interventions. The research study indicated parental locus of control, in particular the two sub-domains of child control, and parent efficacy significantly mediated the relationship between child problem behaviour and parental wellbeing. Conclusions: There is a need to further explore the effectiveness of mindfulness interventions on parental distress and child behaviour, in particular in comparison to well-established interventions and groups. The research study results highlight the importance of parental attributions in influencing the wellbeing of parents of children with intellectual and developmental disabilities. However, it is clear from these findings that there is a complex relationship between parent cognitive attributions and broader social and societal factors. These findings may inform future practice with these families, although further research to explore these complex relationships is required.

This portfolio examines, contextualises and evaluates the contribution of six selected publications focussed on the social model of disability and discrimination within adult nursing in the UK. The publications all appear in peer reviewed journals and trace a developing understanding of the concept "disability‟, recognition of the impact of discrimination and the role that nurses play in sustaining this situation. It develops the idea that a shift towards the social model of disability will be instrumental in challenging disability related discrimination. Implications for adult nursing are examined including the potential of social advocacy and the need for a closer relationship between nursing studies and disability studies. The contribution to the knowledge base is unique in the context of adult nursing suggesting that embracing the social model may facilitate a legitimate contribution to the aims of the disability movement. A framework is developed for the evaluation of the contribution of the submitted papers using the concepts; Model of disability, Interests being served, Non-exploitative approaches and Challenging disablism by extensive dissemination [MINC]. The portfolio draws on many more than the six submitted papers in demonstrating an extensive dissemination strategy. The complexity of the concept of disability and the role of nurses in disability research is explored and critiqued. Contemporary critical theory is drawn on as an epistemological base combining critical analysis and reflexivity with empirical procedures. It concludes with tangible links into future developments of this body of work in championing the need for challenging discrimination and the potential use of the social model as a valuable tool in moving towards this goal.

abstract: Despite the changing social, legal, and political context in influencing the definition of mental disability, medical scholarship has maintained its position as the primary reference to interpret mental disability in the immigration system. This preliminary study examines the role of medical scholarship in attributing to the exclusion of undesired immigrants through its definition of mental disability. This paper focuses upon immigration cases to determine the patterns that emerge when immigration intersects with mental disability. The data consists of four immigration court cases in 1951-1985, 1986-2005, 2006-2015, which mark the shift of immigration policy in the United States of America (US). The court documents are collected from websites that provide online access to these documents. The examination of the cases focuses on three important criterions: a summary of cases, mental disability circumstances, and judges’ considerations. This paper uses the analysis of political deviance in courtroom settings to get an understanding of the shift in the definition of mental disability in the immigration court by tracing economic, political, and social environments that are intertwined and relevant in creating a ‘mental disabilitiy’ definition. This study suggests that medical scholarship has historically become powerful in shaping mental disability as a form of social control. From historical and case analysis, there have been changes in policies and processes toward immigrants appear to take place in the aftermath of major events—World War II, AIDS epidemic, 9/11 terrorist attack, and now Covid-19 pandemic. Preliminary examination of documented cases suggests future analysis could look at how these major events shape immigration processes and policies that more heavily rely on definitions of mental illness and use competency to stand trial proceedings to indefinitely detain people. / Dissertation/Thesis / Masters Thesis Justice Studies 2020

The Work-Disability Functional Assessment Battery (WD-FAB) is a self-reported measure, developed to allow the SSA to collect systematic and comprehensive information about claimants’ functioning. It consists of eight scales: Basic Mobility, Upper Body Function, Fine Motor Function, Community Mobility, Cognition & Communication, Resilience/Sociability, Social Interactions, and Mood & Emotions. Three studies were conducted to evaluate the WD-FAB and apply it as an outcome measure to examine questions relevant to work disability measurement. "Examining Activity Domain Structure of the International Classification of Functioning, Disability, and Health (ICF)" empirically tests the structure of the WHO’s ICF Activity subdomains by comparing it to the empirical structure of the WD-FAB. The comparison found good alignment between the physical function WD-FAB scales and ICF Mobility; several Activity subdomains converge into Cognition & Communication in the WD-FAB. Mental Functions and certain Interpersonal Interactions converge. A re-organization of the subdomains into distinct, measurable constructs is presented for future ICF revisions. "Who Applies to Social Security Disability Programs? Demographic and Functional Differences among Claimants" examines how Social Security disability claimants compare sociodemographically to the working age US population, assesses differences in claimants’ functional status by demographic characteristics, and showcases a method to detect Differential Item Functioning (DIF), which, once controlled for, minimizes measurement error. 17 items displayed DIF, primarily based upon gender. Claimants were sociodemographically different from the general sample and reported lower functioning. Within claimants, there were very few differences of consequence in function between different sociodemographic groups. "Determining Functional Profiles of Common Conditions explores the relationship between diagnoses and function." Common patterns of diagnoses among claimants were identified: musculoskeletal, cancer, multisystem, neurological & sensory, and mental conditions. Many of the diagnosis groups showed unique functional features. The identification of functional profiles for different condition groups suggests that WD-FAB scores may add value to the disability determination process. There is no single litmus test for work disability, but incorporating self-reported experiences is becoming an increasingly common focus in the field. This work demonstrates how a conceptually grounded self-reported measure of functioning can be used to understand the condition of individuals whose health limits their ability to work.

The objective of this dissertation was to evaluate an integrated knowledge translation intervention in a community-based service agency providing services to adults with intellectual disabilities. The dissertation had two objectives: 1) to understand how stakeholders create knowledge, collaborate, and make decisions to implement knowledge on supporting sexuality, and 2) to examine the underlying processes of integrated knowledge translation and how these interplay in the context of community and intellectual disability research. First, we conducted a scoping review to identify strategies to support the sexuality of persons with intellectual disabilities. This knowledge was made available and discussed with stakeholders of the participating agency (i.e., persons with intellectual disabilities, front-line staff, caregivers, supervisors, and senior management) using various methods such as focus groups, an evidence brief and a stakeholder dialogue. Data collection included transcripts of discussions with stakeholders, facilitator notes, notes from the primary researcher, and two self-report questionnaires. The intervention resulted in two in-person workshops and an online program on sexual health for persons with intellectual disabilities and front-line staff. Second, we identified barriers and facilitators to conducting an integrated knowledge translation intervention in a community and disability setting. These included power dynamics and the accessibility of the integrated knowledge translation intervention to knowledge users. The findings from these two aims presented in this dissertation inform changes that may further increase the relevance and applicability of knowledge translation interventions in the community and disability setting.