EXPERIENCES OF YOUNG ADULTS WITH INTELLECTUAL DISABILITIES IN SMALL TOWN AND RURAL ONTARIO by Hélène Ouellette-Kuntz A thesis submitted to the Department of Geography In conformity with the requirements for the degree of Doctor of Philosophy Queen’s University Kingston, Ontario, Canada (September, 2012) Copyright ©Hélène Ouellette-Kuntz, 2012 Abstract The aim of this thesis is to analyze social inclusion among young adults with intellectual disabilities in small towns and rural community settings. The specific context is three small towns in south eastern Ontario in 2006/2007. A phenomenological study relying on a hermeneutics cycle is undertaken to derive an understanding from multiple sources. In the first instance, policy documents related to the province's approach to supports for adults with intellectual disabilities, the research literature on experiences of adults with intellectual disabilities in rural communities, and conceptual models of social inclusion were reviewed. Seventeen young adults with intellectual disabilities (20 to 28 years of age), their caregivers (n=13) and other community members (n=20) from the three selected towns were interviewed. The interviews included quantitative tools and open-ended questions. Data from the Canadian census were also used to characterize the towns. The data collected led to quantitative (counts, median scores, proportions) and qualitative (significant statements, formulated meanings, themes) analyses for comparisons within and across towns in order to reveal the role of context in social inclusion. The results highlight the importance of context. While similarities exist among the small towns in the region, they each have unique features which impact on the experience of social inclusion for young adults with intellectual disabilities. Key lessons are learned. Attention needs to be given to the availability and proximity of spaces and structures for interaction. The role played by developmental service agencies needs to be examined critically as it may hinder social inclusion and sense of belonging. i As community involvement is easier for those seen as similar and sense of community is stronger among those who see themselves as similar, the socio-demographic profile of a town can be an important factor mitigating for or against social inclusion efforts. Finally, since residents of a small town who have a greater need for supports derive more sense of community from knowing that other residents are willing to help those in need, fostering caring communities may be as important as creating services specific to persons with intellectual disabilities. The need for geographers, epidemiologists and other social and life scientists to study persons with intellectual disabilities within the places where they live remains a research area where there is still much to learn and be done. ii Acknowledgements As the completion of this thesis has been a long journey, there are numerous individuals to thank. I must begin by expressing my deepest gratitude to my husband, Raymond, and children, Zoé and Maxim, who have supported me throughout the years and accepted my many evenings and week-ends away at the office. The delivery of gourmet meals at the office kept me going on many occasions. I owe much to my supervisor, Mark Rosenberg, who never doubted that I would complete the work and who was always understanding of the many demands on my time. I thank the many research staff and students who have come and gone over the years for their support and understanding when I had to make my thesis a priority. A special “thank you” goes to Hilary Brown for transcribing the many hours of interviews. I am grateful to members of the Department of Community Health & Epidemiology and especially my Department Head, Dr. Bill Mackillop, for supporting my decision to pursue a doctoral degree. For the inspiration to undertake and complete this thesis, I acknowledge my colleagues in the field of intellectual disabilities at Queen’s and elsewhere as well as the service providers, families and individuals with intellectual disabilities with whom I have had the pleasure of working. This project would not have been possible had it not been for the participation of the young adults with intellectual disabilities, their caregivers and the community members in the three towns studied. I feel privileged to have had the opportunity to meet them and to learn from them. iii This thesis evolved from the work of the Southeastern Ontario Community-University Research Alliance in Intellectual Disabilities (SEO CURA in ID; www.seocura.org) which was supported through a grant I received from the Social Sciences and Humanities Research Council of Canada (SSHRC) [#833-20003-1008]. The views expressed in this paper are not necessarily the views of all SEO CURA in ID partners, researchers, collaborators or of SSHRC. iv Statement of Originality I hereby certify that all of the work described within this thesis is the original work of the author. Any published (or unpublished) ideas and/or techniques from the work of others are fully acknowledged in accordance with the standard referencing practices. (Hélène Ouellette-Kuntz) (June, 2012) v Table of Contents Abstract ........................................................................................................................................... i Acknowledgements ...................................................................................................................... iii Statement of Originality ................................................................................................................v List of Tables ..................................................................................................................................x List of Figures .............................................................................................................................. xii Chapter 1: Introduction ................................................................................................................1 Intellectual Disabilities, Public Policy and Inclusion ......................................................................4 Previous research on the impact of social inclusion policy .................................................8 Community and Social Inclusion ...................................................................................................14 Community ........................................................................................................................14 Social inclusion ..................................................................................................................15 Chapter 2: Literature Review - Rural Lifeworlds of Adults with Intellectual Disabilities...20 Approach to the Literature .............................................................................................................22 Findings..........................................................................................................................................24 Rural incidence/prevalence ................................................................................................24 Rural Services ....................................................................................................................25 Health services .......................................................................................................26 Employment............................................................................................................27 Rural lifeworlds .................................................................................................................28 Discussion ......................................................................................................................................32 Defining rural .....................................................................................................................32 Defining the scope of lifeworld .........................................................................................32 Understanding the lifeworlds of adults with intellectual disabilities in rural areas ...........33 Advancing our understanding ............................................................................................37 vi Chapter 3: Geography, Rurality and the Lifeworlds of Young Adults with Intellectual Disabilities .....................................................................................................................................40 Chapter 4: Methods .....................................................................................................................50 Underlying Methodological Approach ..........................................................................................50 Research Procedures ......................................................................................................................54 Site and participant selection .............................................................................................54 Data collection ...................................................................................................................55 Neighborhood Sense of Community Scale. ............................................................56 Social Action Research Project Questions ............................................................57 Quality of Life Instrument Package – Belonging Subscale ...................................57