POWER AND DISABLED PEOPLE: A COMPARATIVE CASE STUDY OF THREE COMMUNITY CARE SERVICES IN LONDON Toby Brandon Thesis submitted in partial fulfillment of the requirements of The University of London for the degree of Doctor of Philosophy. Department of Social Policy and Administration. The London School of Economics and Political Science. June 1999 UMI Number: U144931 All rights reserved INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted. In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion. Dissertation Publishing UMI U144931 Published by ProQuest LLC 2014. Copyright in the Dissertation held by the Author. Microform Edition © ProQuest LLC. All rights reserved. This work is protected against unauthorized copying under Title 17, United States Code. ProQuest LLC 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, Ml 48106-1346 Theses . r . 6 5 5 1 ^ 3 ABSTRACT The main research question addressed is how the perceptions and experiences of people with disabilities around what is termed ‘quality of life’ are enhanced or modified by differing service delivery systems. This approach is based on the assumption that people with disabilities have unique knowledge about services, providing a core understanding of the power around decision making and its effects on their lives. The perspectives and methodology used are underlined by concepts of user autonomy, social control, independence, interdependence, advocacy, respect and citizenship. The case study methodology provides an in-depth focus on both ‘positive’ and ‘negative’ ethics in social science. The research area was examined within a multi-professional framework and aimed at a triangulation of perspectives from participant observation, user and professional interviews, tailored vignettes and organisational documentation from services formally designed to empower their users following the latest government policy. The research, following the principles of grounded theory, examined to what extent care management and advocacy, residential support and service brokerage and a more traditional day centre system were achieving these primary aims. The qualitative data generated by the research gives rise to a socio-organisational power analysis of ‘service forums’. The service forums are constructed from ‘service postures’ and ‘service cultures’. Service posture refers to the set of formal values and beliefs owned by an organisation. The service posture for the residential consortium is summarised as ‘normality’, the day centre’s as ‘respect’ and the care management organisation’s as ‘advocacy’. The organisations’ service cultures are the unofficial presentation of the service, shown to come from the service posture, either being complementary, its antitheses, or quite separate. It is clear that the behaviour of the workers and the structure of the three organisations studied have both distinct and profound effects on their users’ senses and experiences of power. The conclusion explores the elements of disability, choice and decision making which make up the socio-organisational power structures with respect to each organisation. Finally ways in which a participatory service delivery system could be constructed are considered in the context of training, policy and organisational structure. ACKNOWLEDGMENTS Foremost I wish to thank Professor Shula Ramon for her excellent supervision and support. I would also like to pay tribute to both my mother Althea and brother Stewart who proved invaluable proof readers. At the London School of Economics I would like to thank all the staff and students in the department of Social Policy and Administration singling out Professor Howard Glennerster. As for my friends the now Dr. Nicola Morant and Dr. Kalwant Bhopal offered much encouragement and support. I would also like to thank the E.S.R.C for funding me and for having an effective approach to administration. Both the staff and users of the three organisations studied gave first class commitment and input in to this venture and I would like to thank them for their patience. The postgraduate group at the University of Durham Department of Sociology along with Professor Tim May, has also proved an inspiring forum for the final stages of the work. On a personal note I wish to thank Professor John Carpenter for being an understanding boss, Alison Dannell for living with me through most of this and Tricia Webb, Jo Lancaster, Marilyn Kendal and Dr. Richard Thompson for their sterling last minute support. Finally I wish to thank my father David for agreeing not to read the thesis so I can present it to him. Table of Contents Page Number Abstract i Acknowledgments ii Table of Contents iii List of Figures vii List of Tables ix Chapter 1 Introduction 1 Chapter 2 Empowerment 4 2.1 Definition of Empowerment 4 2.2 Context of Empowerment 6 2.3 Self Concept and Empowerment 15 2.4 Identity, Stigma and Empowerment 17 2.5 Process and Outcome in Empowerment 21 2.6 Advocacy and Empowerment 23 2.7 Consumerism and Empowerment 28 2.8 Summary 34 Chapter 3 Social Control 37 3.1 Definition of Social Control 37 3.2 Context of Social Control 37 3.3 Power and Social Control 42 3.4 Conflict and Social Control 45 3.5 Social Control and Deviance 49 3.6 Social Control, Stigma and Stereotypes 53 3.7 Social Control and Institutions 55 3.8 Professional Social Control 62 3.9 Further Guises of Social Control 65 3.10 Summary 73 iii Chapter 4 Need and Quality of Life 75 4.1 Need 75 4.2 Demand 77 4.3 Need, Empowerment and Values 78 4.4 Quality of Life 81 4.5 Need and Social Provision 87 4.6 Summary 92 Chapter 5 English Community Care Policy 94 5.1 Definition of Terms 94 5.2 Context of Community Care Policy 103 5.3 Key Elements of Contemporary Community Care Policy 107 5.4 Community Care Policy Implementation 116 5.5 The Value Base of Current Community Care Policy 121 5.6 Summary 128 Chapter 6 English Community Care Services 131 6.1 Care Management 131 6.2 Individual Funding 142 6.3 Care Planning 152 6.4 Day Services 156 6.5 Residential Services 159 6.6 Summary 162 Chapter 7 Methodology 164 7.1 Aims of the Research 164 7.2 Theoretical Foundations of the Research Design 166 7.3 Research Design 169 7.4 The Interviews 177 7.5 Participant Observation 185 7.6 The Pilot Study 186 7.7 Documentary Evidence 190 7.8 Case Study Design 191 7.9 The Ethics of Doing Research 192 7.10 Use of Computers in Qualitative Data Analysis 200 7.11 Summary 206 iv Chapter 8 Disability and Respect 208 8.1 Disability 209 8.1.1 Definitions and Labels 209 8.1.2 Contributing Factors 219 8.1.3 Consequences of Disability 220 8.2 Respect 226 8.2.1 Practice and Theory 226 8.2.2 Sense of Humour 231 8.2.3 Adulthood 232 8.2.4 Overprotective 233 8.3 Summary 234 Chapter 9 Power and Choice 236 9.1 Positive Power 236 9.1.1 Advocacy 236 9.1.2 Empowerment 243 9.1.3 Freedom 247 9.1.4 User Consultation 249 9.1.5 Service Brokerage and Individualised Funding 250 9.2 Negative Power 254 9.2.1 Professional Distance 254 9.2.2 Professional Prejudice 257 9.2.3 Coercion 258 9.2.4 Containment 260 9.3 Practical Power 260 9.3.1 Choice 261 9.3.2 Responsibility 266 9.3.3 User Employment 267 9.4 Theoretical Power 268 9.4.1 Citizenship 268 9.4.2 Egalitarianism 269 9.4.3 Rights 269 9.4.4 Status 270 9.5 Summary 270 v Chapter 10 The Theory of Service Forums 273 10.1 Retrospective Methodology 274 10.2 The Analysis 275 10.3 Theory of Service Forums (Postures and Cultures) 275 10.4 The Literature Review 278 Chapter 11 Conclusion 11.1 Overview 282 11.2 The Care Management Organisation 283 11.3 The Day Centre 285 11.4 The Residential Consortium 291 11.5 Research Answers 293 11.6 Future Research and Policy 297 References 300 Appendices A Demographics of Respondents 320 B User Interview Topic Guide (Day Centre) 324 Professional Interview Topic Guide (Day Centre) 327 C Professional Interview Vignettes (Day Centre) 329 User Interview Vignettes (Day Centre) 330 D NUD*IST Node List 331 vi List of Figures Page Number Figure 1 Power in Organisations 10 Figure 2 Empowerment - conditions 12 Figure 3 Oppression - conditions 13 Figure 4 Self Concept 15 Figure 5 Self Empowerment 16 Figure 6 Identity 18 Figure 7 Empowerment - process 22 Figure 8 Decision Making - process 33 Figure 9 Conflict 46 Figure 10 Independent Living 83 Figure 11 Well being, Autonomy and Protection 90 Figure 12 Community 95 Figure 13 Attack upon Community 97 Figure 14 Caring 100 Figure 15 Quality Agenda 106 Figure 16 Power Sharing 123 Figure 17 The Service Culture 124 Figure 18 Street Level Bureaucracy 125 Figure 19 Individualised Funding 143 Figure 20 Individualised Funding - the future 162 Figure 21 Vignette comparison/analysis 190 Figure 22 Case Studies 191 Figure 23 Informed Consent 194 Figure 24 NUD*IST data (sources) 204 Figure 25 NUD*IST data (tree) 205 Figure 26 NUD*IST Disability 208 Figure 27 NUD*IST Respect 225 Figure 28 NUD*IST Power 236 Figure 29 NUD*IST Positive 236 Figure 30 NUD*IST Negative 254 Figure 31 NUD*IST Practical 260 Figure 32 NUD*IST Theoretical 268 Figure 33 Service Posture 277 Figure 34 Service Culture 277 Figure 35 Service Forums 277 vii Figure 36 Overview 282 Figure 37 Reaction to Service Posture 284 Figure 38 Professional Distance 286 viii List of Tables Page Number Table 1 Social control and pervasiveness 40 Table 2 Social control and challenging behaviour 41 Table 3 Social control and services 62 Table 4 Social value systems