TRANSINSTITUTIONALIZATION: A CASE STUDY OF TWO RESIDENTIAL CARE FACILITIES IN RURAL MIDWEST NORTH AMERICA A Dissertation Presented to The Faculty of the Graduate School At the University of Missouri In Partial Fulfillment Of the Requirements for the Degree Doctor of Philosophy _______________________________________________________ By RENEE DESNEIGE CHRISTENSEN Dr. Benyamin Schwarz, Dissertation Supervisor May 2015 The undersigned, appointed by the dean of the Graduate School, have examined the dissertation entitled Transinstitutionalization: A Case Study of Two Residential Care Facilities in Rural Midwest North America presented by Renee Christensen, a candidate for the degree of Doctor of Philosophy, and hereby certify that, in their opinion, it is worthy of acceptance. Professor Benyamin Schwarz Professor Ruth Tofle Professor Coleen Galambos Professor Newton D’Souza DEDICATION Dedicated to my brother, Michael Samuel Hoffman (February 9, 1963-February 17, 2011), who found no shelter in this world from the storms of life. ACKNOWLEDGEMENTS I would like to thank the faculty and staff of the Department of Architectural Studies at the University of Missouri for providing me with the knowledge and skills required to complete this process. Dr. Benyamin Schwarz, a simple “thank you” does not seem sufficient for the support, guidance, and encouragement you provided throughout my studies. Dr. Ruth Tofle, thank you for being a positive role model and seeing my abilities which I had not yet realized. Dr. Newton D’Souza, thank you for challenging me to become an efficient researcher and giving me the tools for achievement. Dr. Colleen Galambos, thank you for mentoring me and encouraging me to incorporate areas of study that I would not have considered on my own. I would also like to thank my family: parents, Liliane and Dennis Hargiss; children, Amber, Christie, Tyler, Jordan, Luke, and Eli; sisters, Michelle, Nancy, and Laurie; and brothers, Michael and Rick, for their unending support and understanding through this difficult but rewarding process. Thank you to my friends for reminding me to stay grounded, especially Shannon, who continually reminded me of the value of humor in difficult times. Last, but not least, thank you for all the participants in this study for sharing insights into their lives and reminding me of the importance of this project. ii TABLE OF CONTENTS Acknowledgement Page ii List of Figures v Abstract vii Chapter One: Introduction 1 Statement of the Problem 4 Purpose of the Study 4 Research Questions 5 Limitations 6 Motivation for Study 6 Chapter Two: Methods 7 Grounded Theory 9 Case Study 10 Study Sites 10 Data Collection 16 Data Analysis 18 Ethical Standards 20 Validity 21 Chapter Three: Conceptual Framework 22 Institutionalization 34 Normalization 35 Social Role Valorization 37 Civil Rights Movement 38 Deinstitutionalization 38 Civil Rights Movement 41 Recent Legislation 41 Community Mental Health Centers 41 Residential Care Facility 45 Chapter Four: Findings 51 The Places 52 Bridgemont 52 Stoneybrook 63 The People 74 Public Administrators (Guardians) 75 Government Officials 81 Facility Administrators 82 iii Facility Staff Members 84 Visitors 86 Family 87 The Community 89 Residents 90 Public Policy 105 Chapter Five: Discussion 116 Daily Rounds 116 Eating 118 Bath and Body Care 122 Ostracism 126 Built Environment Contributions 130 Conclusions 141 Transinstitutionalization 143 Implications for Research 144 Exhibit A 146 References 149 Vita 153 iv LIST OF FIGURES Figure 1: Bridgemont, Floor Plan, first floor 11 Figure 2. Bridgemont, Floor Plan, second floor 12 Figure 3. Stoneybrook, Floor Plan, third floor 13 Figure 4. Stoneybrook, Floor Plan, first floor 14 Figure 5. Stoneybrook, Floor Plan, second floor 15 Figure 6. Brownes Hospital 23 Figure 7: Beamsley Almshouse 24 Figure 8: Pennsylvania Hospital 26 Figure 9: Paterson General Hospital 27 Figure 10: Paterson General Hospital 27 Figure 11: Eastern State Hospital 30 Figure 12: Kirkbride Plan 32 Figure 13: Nevada State Hospital 32 Figure 14: Fairfield State Hospital 33 Figure 15: Deinstitutionalization graph 39 Figure 16: Large facility with 206 beds in a metropolitan area 47 Figure 17: RCF operated by Christian organization 48 Figure 18: Resident bedroom at RCF operated by Christian organization 48 Figure 19: Institutional building converted into a RCF 46 Figure 20: RCF with home-like appearance 50 Figure 21: RCF with apartment/duplex appearance 50 Figure 22: Bridgemont, west façade 53 Figure 23: Bridgemont, west façade 49 Figure 24: Bridgemont, east façade 53 Figure 25: Bridgemont, axon drawing, Main entrance 54 Figure 26: Bridgemont, axon drawing, first floor 55 Figure 27: Bridgemont, kitchen 56 Figure 28: Bridgemont, first floor corridor 58 Figure 29: Bridgemont, first floor corridor 58 Figure 30: Bridgemont, axon drawing, second floor 60 Figure 31: Bridgemont, second floor corridor 61 Figure 32: Bridgemont, axon drawing, third floor 62 Figure 33: Bridgemont, Third Floor, skylight 62 Figure 34: Bridgemont, third Floor, skylight 62 Figure 35: Bridgemont, stairwell 62 Figure 36: Bridgemont, elevator 62 Figure 37: Vernacular architecture, Broadway Street ca.1900 63 Figure 38: Vernacular architecture Broadway Street ca. 1900 63 Figure 39: Broadway Street, 2014 64 Figure 40: Broadway Street, 2014 64 v Figure 41: Stoneybrook, north façade 64 Figure 42: Stoneybrook, north façade 64 Figure 43: Stoneybrook, axon drawing, first floor, main entrance 65 Figure 44: Stoneybrook, south façade 66 Figure 45: Stoneybrook, smoking porch 66 Figure 46: Stoneybrook, Floor Plan, first floor 67 Figure 47: Stoneybrook, interior front door, view from inside the sitting room 68 Figure 48: Stoneybrook, female bedroom 69 Figure 49: Stoneybrook, female bedroom 69 Figure 50: Stoneybrook, dining/living/recreation room 70 Figure 51: Stoneybrook, kitchen 71 Figure 52: Stoneybrook, kitchen 61 Figure 53: Stoneybrook, laundry area leading to bathroom 72 Figure 54: Stoneybrook, bathroom 72 Figure 55: Stoneybrook, Floor Plan, second floor 73 Figure 56: Bridgemont, axon drawing, second floor 119 Figure 57: Stoneybrook, axon drawing, dining area 122 Figure 58: Bridgemont, axon drawing, shower room and bathroom 122 Figure 59: Stoneybrook, axon drawing, first floor bathroom 123 Figure 60: Bridgemont, axon drawing dining area 133 Figure 61: Stoneybrook, axon drawing, first floor 134 Figure 62: Bridgemont, axon drawing, second floor 135 Figure 63: Stoneybrook, axon drawing, first floor 138 vi Transinstitutionalization: A Case Study of Two Residential Care Facilities in Rural Midwest North America Renee Desneige Christensen Dr. Benyamin Schwarz, Dissertation Supervisor ABSTRACT Since deinstitutionalization began during the 1950’s in North America, thousands of individuals with a Severe and Persistent Mental Illness were forced out of large, state run, institutions. While society may have seen deinstitutionalization as a positive direction for society, the outcome of this grand plan is obscure because the plan made no provision for new living environments for this population and funding issues prevented adequate community support services. Therefore, many individuals with a mental illness became homeless, makeshift living environments were developed without prior understanding of the specific housing needs, and funding issues prevented adequate community-based support services for this vulnerable population. In addition, current public policy prohibits a full range of activities of daily living which ensure the continued institutionalization of this population. In this qualitative case study I interviewed residents living in Residential Care Facilities (RCFs) and participants in their lives in an effort to understand the interaction between the residents and their environment. The findings from this study illuminated the daily struggles of individuals with a mental illness and the substantial effects of the interaction between the residents and their social and physical environments. The results show that the individuals living in Residential Care Facilities exhibit institutionalized behaviors and the program of deinstitutionalization was never realized for these individuals. The program of deinstitutionalization was supposed to ensure more freedom and choices for individuals with a mental illness. Instead, these individuals were transinstitutionalized as opposed to deinstitutionalized. vii CHAPTER ONE Introduction The Centers for Disease Control and Prevention (CDC) reports that the World Health Organization (2013) published studies which reported as many as twenty-five percent of all United States adults have a mental illness and that nearly fifty percent of U.S. adults will develop at least one mental illness during their lifetime. In addition, according to the World Health Organization (WHO), mental illness results in more disability in developed countries than any other group of illnesses, including cancer and heart disease, and created an economic burden of about $300 billion in 2002 (CDC, 2013). Although not all individuals who develop a mental illness will become incapacitated to the point where they are unable to care for themselves, some will require assistance with day-to-day living activities. Those individuals who are unable to live independently are often appointed a legal guardian and live in some type of facility at some point in their lives. The total number of individuals with a mental illness living in any type of living facility in the United States is difficult to obtain due to