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Supported Living Environments for Adults with Autism Spectrum Disorders PDF

124 Pages·2017·0.89 MB·English
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Dominican Scholar Graduate Master's Theses, Capstones, and Student Scholarship Culminating Projects 2018 What Makes a House a Home? Supported Living Environments for Adults with Autism Spectrum Disorders https://doi.org/10.33015/dominican.edu/2018.edu.04 Rose Meadows Dominican University of California Survey: Let us know how this paper benefits you. Recommended Citation Meadows, Rose, "What Makes a House a Home? Supported Living Environments for Adults with Autism Spectrum Disorders" (2018). Graduate Master's Theses, Capstones, and Culminating Projects. 315. https://doi.org/10.33015/dominican.edu/2018.edu.04 This Master's Thesis is brought to you for free and open access by the Student Scholarship at Dominican Scholar. It has been accepted for inclusion in Graduate Master's Theses, Capstones, and Culminating Projects by an authorized administrator of Dominican Scholar. For more information, please contact Running Head: What Makes a House a Home? What Makes a House a Home? Supported Living Environments for Adults with Autism Spectrum Disorders By Rose Meadows A culminating thesis submitted to the faculty of Dominican University of California in partial fulfilment of the requirements for the degree of Master of Science in Educati on San Rafael, CA May 2018 What Makes a House a Home? This thesis, written under the direction of the candidate’s thesis advisor and approved by the department chair, has been presented to and accepted by the Department of Education in partial fulfillment of the requirements for the degree of Master of Science in Education. The content and research methodologies presented in this work represent the work of the candidate alone. Rose Meadows May 08, 2018 Candidate Elizabeth Truesdell, PhD May 08, 2018 Department Chair Jennifer Lucko, PhD May 08, 2018 Thesis Advisor Jacquelyn Urbani, PhD May 08, 2018 Secondary Thesis Advisor ii What Makes a House a Home? Copyright © 2018, by Rose Meadows All Rights Reserved iii What Makes a House a Home? Table of Contents: Abstract _______________________________________________________________ vii Acknowledgements _____________________________________________________ viii Chapter I: Introduction ___________________________________________________ 1 Chapter II: Literature Review _____________________________________________ 13 Quality of Life and Happiness ___________________________________________ 15 Happiness __________________________________________________________ 17 A Focus on the Individual: ______________________________________________ 20 Resiliency and Person-Centric Theories ___________________________________ 21 The Importance of Belonging: Social Bonds Including Friendship and Community __ 26 Community _________________________________________________________ 30 The Importance of Purpose: Employment and Daily Activities _________________ 34 Conclusion __________________________________________________________ 35 Chapter III: Methods ____________________________________________________ 38 Description and Rationale ______________________________________________ 38 Design _____________________________________________________________ 40 Methods ___________________________________________________________ 41 Interview data. ______________________________________________________ 41 iv What Makes a House a Home? Observation data. __________________________________________________ 43 ISP and IPP data. ___________________________________________________ 44 Research Positionality _________________________________________________ 46 Data Analysis ________________________________________________________ 48 Validity and Reliability ________________________________________________ 49 Chapter IV: Findings ____________________________________________________ 51 “Because We Love Them” – Parents and the Tension Between Providing Care and Letting Go __________________________________________________________ 53 “The Best Life for Them” - Caregivers and Staff Experience Tension Between Different Goals, Professionalism, and Friendship ___________________________________ 64 “Blossomed” - Residents and Adult Children with Autism and the Perceived Tension Between Assimilation and the Unfettered Pursuit of Interests _________________ 72 “A Real Community” – the Environmental Role _____________________________ 76 Conclusion __________________________________________________________ 81 Chapter V: Implications __________________________________________________ 83 Summary of Findings__________________________________________________ 83 Implications for the Literature __________________________________________ 84 Implications for practice and policy ______________________________________ 87 Limitations of this Research ____________________________________________ 90 v What Makes a House a Home? Directions for Future Research __________________________________________ 91 Chapter VI: Conclusion __________________________________________________ 93 Primary Findings _____________________________________________________ 94 Additional Findings ___________________________________________________ 97 Conclusion __________________________________________________________ 99 Reference List ________________________________________________________ 101 Appendix A: Questions for Parents/Guardians _______________________________ 108 Appendix B: Questions for Caregivers & Staff ________________________________ 110 Appendix C: Figure 1. Interpersonal Tensions Triangle _________________________ 112 Appendix D: IRB Approval Letter __________________________________________ 114 Table of Figures: Figure 1. Interpersonal Tensions Triangle __________________________________ 112 vi What Makes a House a Home? Abstract My research aims to address how supported living environments for adults with Autism Spectrum Disorders (ASDs) can best support their stakeholders. This is an inherently human and personal problem, but existing research tackling this problem utilizing a person-centric and/or resiliency theory lens or framework is lacking. My research will use the perspective of parents/guardians and staff/caregivers in combination with existing knowledge and research to create ideas for how to maximize support in supported living environments for adults with ASD and their families. This is a qualitative study that uses a humanized approach and in-person interviews with stake -holders to highlight their perspectives and understandings . It was found that there was a great deal of internal and external tension for stakeholders, both within themselves and in relationships with each other. Examples of these tensions include: providing care vs. promoting independence; professionalism vs. friendship; and self -actualization vs. assimilation. These tensions pushed stakeholders to explore and evaluate difficult topics which must be addressed in order to have a truly supportive living environment. The implication is that supported living environments should provide opportunities to air these tensions and explore their roots, leading to productive conversations, greater cohesiveness, greater trust, and more individualized supports. vii What Makes a House a Home? Acknowledgements I would like to thank Dr. Urbani for her mentorship and accompanying me on this academic journey. I would like to thank Dr. Lucko for her understanding of the scientific process. My most heartfelt thanks go out to the families and individuals who opened their homes and stories to me. viii What Makes a House a Home? Chapter I: Introduction 1 Sarah felt lost. She felt desperate. She had travelled almost 2,000 miles in the hope of an answer, only to fail to find one. She was out of options, so she made one herself. Sarah is one of a rising number of people: a guardian to an adult child with Autism. Sarah wanted, like many parents, to assist her child in developing a greater feeling of self-esteem and independence by living outside of their family home. Sarah was also getting on in years, and wanted to have the comfort of knowing her child would be safe and settled, even if she passed on unexpectedly. Sarah didn’t want it to be left to her other children to sort through the bureaucratic mess of safety-proofing a house, choosing and paying for appropriate care-providers, facilitating social and employment opportunities, and otherwise ensuring that Sarah’s daughter, Summer, was happy, fulfilled, and living a good life. Sarah felt out of options, so she made one of her own. She worked with other parents in her same situation, and together they founded their own model of supported living for their adult children with Autism Spectrum Disorders (ASDs). That supportive living environment became a home called Sunrise. Sarah and Summer’s story, however, is all too common. At the time of this writing, the San Francisco Autism Society had recently concluded its annual conference (2017), where the theme this year was housing. The story of many speakers had striking 1 All names –both of people and locations/residences- presented in this paper are pseudonyms to protect anonymity. 1

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