Table Of ContentHendey, Nicola (1999) Young adults and disability:
transition to independent living? PhD thesis, University
of Nottingham.
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'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
