Hendey, Nicola (1999) Young adults and disability: transition to independent living? PhD thesis, University of Nottingham. Access from the University of Nottingham repository: http://eprints.nottingham.ac.uk/11631/1/297756.pdf Copyright and reuse: The Nottingham ePrints service makes this work by researchers of the University of Nottingham available open access under the following conditions. This article is made available under the University of Nottingham End User licence and may be reused according to the conditions of the licence. For more details see: http://eprints.nottingham.ac.uk/end_user_agreement.pdf For more information, please contact 'YOUNG ADULTS AND DISABILITY: TRANSITION TO INDEPENDENT LIVING?' by Nicola Hendey, B.Sc., MA Thesis submitted to the University of Nottingham for the degree of Doctor of Philosophy, June, 1999 CONTENTS page Acknowledgements 3 Abstract 4 Introduction 6 1. Disability in Society? 17 2. Transition - A smooth road to adulthood? 43 3. Emancipatory Research From Rhetoric to Reality? 98 The Methodology and Methods of the Research 4. Young Disabled People 159 5. Family Support? 204 6. Education for the Future? 263 7. From School to Welfare? 332 8. Support in the Community? 393 9. Conclusion 440 Appendix: 462 List of Tables 463 Glossary of Terms 465 Introductory Letter 466 Reply Form 467 Questionnaire 468 Sample Details 480 Bibliography 482 2 ACKNOWLEDGEMENTS The author wishes to acknowledge the assistance offered by the following people throughout the preparation of this thesis: I am indebted to: the young physically disabled adults who not only allowed themselves to be tape recorded and spoke with great frankness during the interviews, but also played an active role in locating the snowball sample. Without their support and enthusiasm the study could not have taken place. Dr. Gillian PascalI and Mr. Richard Silbum for their support and encouragement in supervising this thesis. The Clinical and Nursing staff of Moorfields Eye Hospital, London for their encouragement. Dr. Peter Garside for his support. Katherine Pemberton for her support and encouragement. Joy and GeofMurray and Frank and Maureen Trout for driving me to and from University, help with proof - reading and encouragement. Patricia Hulme for her support and encouragement. My fellow PhD students, especially Sue Symonds, Colette Roberts, Kate Clegg and Liz Chisholm for their moral support. Very special gratitude is due to my parents, David and Brenda Hendey, for their belief in me and unfailing support. I am indebted to my father for driving me to and from the interviews with research subjects. My greatest regret is that they did not live to see the work completed. This study was funded by the Economic and Social Research Council, and the author wishes to acknowledge their generous support. 3 ABSTRACT The study aims to explore young disabled peoples I concerns about independent living, and how they view the source of that independence. The transition to adulthood poses particular problems for young physically disabled adults and independent living is a widely shared goal. The independent living movement has spearheaded an increasing awareness amongst disabled people of their rights as human beings and citizens and has brought together ideas on independent living and ways of achieving it. The philosophy of independent living is based on four assumptions: that all human life is of value; that anyone, regardless of their impairment, is capable of exerting choices; that people who are disabled by society's reaction to physical, intellectual and sensory impairment and to emotional distress have a right to have control over their lives, with whatever assistance they need to do so; and that disabled people have the right to participate fully in society. Government policy is consonant with the aims of the independent living movement: to keep individuals in the community and to address their needs more appropriately. This study, which is based upon data from 42 young physically disabled adults uses qualitative methods which were inspired by the ideals of the Emancipatory Research Paradigm. Interviews were in-depth and informal and focussed on the periods before, during, and after transition. The work was conducted from the 4 standpoint of the seven fundamental needs outlined in the social model of disability. To what extent had the young people achieved independent living? None of the sample had achieved independent living in its fullest sense in tenns of employment, independent housing, financial and personal control of assistance, life style, relationships, educational qualifications or transport. A minority had achieved some of these. The majority had low self-esteem and had received inadequate support from families and the education system and had poor employment prospects. Most were reliant on benefits which were insufficient to meet the extra costs associated with disability and few had received support from social services. Most appeared destined for a life on the margins of society. 5 INTRODUCTION 6 The principal focus of the research was to ascertain the experiences, expectations and priorities ofy oung adults with profound physical disabilities who had recently undergone transition from special needs education to living in the community. Although physically disabled people were designated a priority group in the Government's policy document 'Care in Action' (1981), work that has been carried on this area from the standpoint of service provision (Anderson & Clark, 1982; Beardshaw, 1988; Fiedler, 1988; Wagner, 1988; Bax & Smyth, 1989; Morris, 1990; Audit Commission, 1992; Chamberlain, 1993), has highlighted deficits in provision for this group. Services for younger physically disabled adults those aged 16 - 65 years are at the lower end of the spectrum of services for disabled people in terms of quantity and quality (Beardshaw, 1988). It is acknowledged that young adults with profound physical disabilities face particular problems when making the transition from childhood to adulthood and from living in the parental home to living independently in the community. The transition from school to adult life is acknowledged to be a time of particular stress (Court Report, 1976; Warnock Report, 1978). This period has been largely neglected in the literature and there has been little attempt to ascertain the experiences, expectations and priorities of a group of physically disabled young adults who had recently undergone transition. Why is the period so stressful? What are the difficulties faced? What impact does the lack 7 of services have on the lives of young disabled adults? These questions have been neglected in the literature and will be explored in subsequent chapters of this thesis. Professionals (from the fields of medicine and social work) have played a predominant role in the delivery of health and social services to this group since 1945 (Oliver, 1990; Barnes, 1991; Morris, 1994). Whilst the literature suggests that this may be problematic as it reinforces the idea ofi nadequate disabled people who are incapable of making basic decisions about their individual service needs and therefore need expert 'care' (Oliver, 1990; Barnes, 1991), there has been no attempt to investigate the extent to which this is the case or the ways in which it may disadvantage young disabled people who are attempting to make the transition from full-time education to living in the community. This issue will be investigated later in the thesis. Critics from the disability movement have argued that the central role played by professionals in service delivery has legitimated the individual model ofd isability which: Locates the 'problem' of disability within the individual and sees the causes of this problem as stemming from the functional limitations or psychological losses which are assumed to arise from disability (Oliver, 1996:32). 8 There has been little attempt to explore the extent or nature of the impact of this model on the lives of young physically disabled adults. This will be explored in terms of the disability literature and literature on transition from the fields of Psychology, Sociology and Social Policy and the experiences of the young disabled adults themselves. The assumptions underpinning the individual model of disability have not gone unchallenged however. The origins of the independent living movement in Britain lie in disabled people's attempts in the 1950's and 1960's to leave the paternalism of long - stay institutions. Organisations of disabled people mushroomed during the 1970's and 1980's and the resistance to residential care spearheaded an increasing awareness amongst disabled people of their rights as human beings and citizens. (Morris, 1993). The formation of the British Council of Organisations of Disabled People in 1981 provided a national forum which brought together ideas on independent living and ways of achieving it. Centres for Independent Living aiming to provide advice and support for people who wished to live independently were a crucial development. These were inspired by the centre at Berkeley, California and later American Centres. These identified five basic needs which, if met in full, would enable disabled people to achieve independent living: appropriate housing, personal assistance, transport, access to their environment, advocacy and training. The Derbyshire Centre for Integrated Living added another two basic needs to the list, information and counselling and equipment or technical assistance (Crosby & Jackson, 1988; Kestenbaum, 1996). 9