Centre for Disability Studies

Centre for Disability Studies

Creating Independent Futures: An Evaluation of Services Led By Disabled People

Colin Barnes, Geof Mercer, and Hannah Morgan

This was a two year research project which started on January 1st 2000, jointly co-ordinated by the British Coalition of Disabled People (BCODP) and the National Centre for Independent Living (NCIL),  and funded by a grant from the National Lottery Charities Board.

Project Summary

The research had three key aims.

  1. to provide a critical evaluation of the development, organisation, and services provided by CILs and similar user led initiatives through out the UK. 
  2. to identify the principal forces – economic, political, and social – hindering their further development.
  3. to produce and disseminate, in a variety of accessible formats, findings and recommendations to disabled people, their organisations, and policy makers in both the public and private sectors.

The project ran for two years and was comprised of 4 key stages:

Stage 1: establishing boundaries and criteria (January-July 2000)

Three main research strategies were employed in stage one:

A Literature review was understaken in order to provide background information and to identify appropriate organisations to include in the study. Relevant information from a variety of secondary sources, including published material, books, journals, disabled people’s organisations newslatters, NCIL records as well as internet documents was collected and analysed. The information provided the basis for a ‘History of the Independent Living Movement in the UK and an annotated bibliography of independent living and user-involvement” (forthcoming).

Four seminars were held to explain the aims of the research and to elicit the support of disabled people and their organisations. All known CILs and user-led initiatives were contacted and provided with details of the research: rationale, aims and proposed methodologies, as well as an invitation to participate in the seminars and focus groups. A total of 75 organisaitons of disabled people were invited to participate in the seminars, of which 48 sent representatives. All but one of over 50 participants were disabled people and represented a diversity of experience of user-led initiatives.

Suggested topics by the research advisory committee were:

Summaries of each seminar can be downloaded here.

The information gleaned from the literature review and seminars formed the basis of the final section of phase one; a survey of all known user-led organisations providing ‘independent living’ services to disabled people. The survey was designed by the research team and approved by the research advisory committee in April 2000. The key issues relating to the form and content of the survey questionnaire were gathered from the literature review and seminars. The questionnaire addressed the following topics:

The Stage 1 report can be downloaded here.

Stage 2: in-depth analysis of user led organisations (July – December 2000)

This stage comprised detailed in depth analysis of nine user-led service providers. The sample included two organisations from Scotland, two from Wales, one from the north of England, one from the midlands, one from the west of England and two from the South East and London. Care was taken to ensure the sample included organisations providing a comprehensive range of services in both urban and rural environments.

The organisations taking part in this stage of the project were selected by Research Co-ordinating Committee and included: Cardiff & Vale Coalition of Disabled People, CIL de Gwynnedd, Centre for Independent Living in Glasgow (CILiG), Derbyshire Coalition for Inclusive Living (DCIL),Disability Action North East (DANE), Greenwich Centre for Independent Living, Lothian Centre for Independent Living, Surrey Users Network (SUN), West of England Centre for Independent Living (WECIL).

This element of the research involved:

The Stage 2 report can be downloaded here.

Stage 3: user interviews (January – July 2001)

This stage of the research began with a detailed content analysis of the data collected from Stage Two, yielding a number of issues relating to the use and delivery of services. These informed the construction of semi-structured interview schedules to be used in a user survey, the aim of which was to enable users to articulate their experiences of user-led initiatives, the services they provide, and contribute to their development.

A minimum of ninety users were interviewed; ten from each organisation. The sample was drawn from data provided by the organisation. Care was taken to ensure an appropriate gender balance and to include representatives of marginalised groups within the disabled population.

All potential interviewees were contacted beforehand and appropriate validation procedures adopted. Following user validation interview data was coded and analysed; summaries of the relevant issues were fed back to the service provider in order to help improve local services.

Stage 4: analysis and dissemination (July – December 2001)

The final stage of the project involved careful critical evaluation of the accumulated data and the production of summary documents, articles, conference papers, and research reports for a variety of audiences; notably disabled people and their organisations, professionals, policy makers, politicians and academics.

All published material was written in clear, jargon free language and produced simultaneously in accessible formats. Additionally, members of the research team visited all nine locations to disseminate and discuss findings with participants, service providers and users. The project concluded with a two day national conference organised by the research team aimed at disabled people, their organisations, service providers, politicians and policy makers.

Background

Since the appearance of the American Independent Living Movement (ILM) in the 1970s and the international disabled people’s movement in subsequent decades, there has been a gradual but growing demand by disabled people and their organisations for greater involvement in the development and running of services for disabled people (UPIAS, 1976; ENIL, 1989; Ratska, 1992; Bickenbach, 1993; Coleridge, 1993; DPI, 1993; Barnes and Mercer, 1995). Further, changing political climates and the escalating costs of welfare have resulted in greater support for user led initiatives from both politicians and policy makers in many countries throughout the world including Britain (Patton, 1990; Albrecht, 1992; Hellender, 1993).

A major outcome of these developments has been the emergence and development of organisations controlled and run by disabled people widely known as Centres for Independent Living (CILs) which provide services directly to disabled people and their families. Particularly prevalent in America and Canada as well as other parts of the world, (Scotch, 1989; Evans, 1993) CILs have been relatively slow to develop in the UK (Oliver and Zarb, 1989; Morris, 1993a)

Britain’s first two CILs began operations in 1985 (Davis and Mullenders, 1993; Evans, 1993). Thirteen years later, September 1998, the number has risen to only fourteen. However, there are many other user led initiatives providing ‘independent living’ services to disabled people and their families but which do not refer to themselves as a CIL (NCIL, 1998). Exactly why the British CIL movement has been slow to develop and why some organisations do not consider themselves a CIL has yet to be fully explained. The situation is made even more complex by the fact that some traditional ‘professionally’ led service providers have recently adopted the phrase ‘independent living’. A well known example is the national network of ‘Independent Living Centres’ previously known as ALACs or ‘Artificial Limb and Appliance Centres’ (Barnes, 1995).

There is little doubt that CILs and similar initiatives have played a crucial role in both the empowerment of disabled people and the evolution of more user friendly services (Oliver and Zarb, 1989: Oliver, 1990; 1996; Morris, 1993a, 1993b; Kestenbaum, 1995; Oliver and Barnes, 1998). Moreover, whilst there have been studies comparing the relative benefits, both economic and social, of this type of provision with traditional ‘professionally’ led services (Oliver and Zarb, 1992; Morris, 1993b; Zarb and Nadash, 1994), there is, as yet, no comprehensive detailed and factual information about their development, main user groups, and the services they provide.

References

ALBRECHT, G. (1992) The Disability Business: Rehabilitation in America, London, Sage Library of Social Research, (especially Part Two)

BARNES, C. (1995) From National to Local, Derby, The British Council of Organisations of Disabled People.

BARNES, C. and MERCER, G. (1997) Doing Disability Research, Leeds,, The Disability Press.

BARNES, C. and MERCER, G. (1995) ‘Disability: Emancipation, Community Participation and Disabled People’ in Mayo, M. Craig, G (eds.) Community Empowerment: A Reader in Participation and Development, London, Zed Books, pp. 46-59.

BICKENBACH. J. E. (1993) Physical Disability and Social Policy, Toronto, University of Toronto Press.

COLERIDGE, P. (1993) Disability Liberation and Development, Oxford, Oxfam Publications.

DPI. (1993) Proceedings of the 3rd World Congress of Disabled People’s International, Winnipeg (Canada), Disabled Peoples’ International.

EVANS, J. (1993) ‘The Role of Centres for Independent Living’ in BARNES, C. (ed.) Making Our Own Choices, Derby, The British Council of Organisations of Disabled People.

HELLENDER, E. (1993) Prejudice and Dignity: An Introduction to Community Based Rehabilitation, Geneva, World Health Organisation

HUNT, P. (1981) ‘Settling Accounts with the Parasite People’ in Disability Challenge, No 2, pp. 37-50 .

KESTENBAUM, A. (1996) Independent Living: A Review, York, Joseph Rowntree Foundation.

MORRIS, M. (1993a) Community Care or Independent Living, York, Joseph Rowntree Foundation.

MORRIS, J. (1993b) Independent Lives, London, Macmillan. Foundation.

MORRIS, M. (1993a) Community Care or Independent Living, York, Joseph Rowntree Foundation.

MORRIS, J. (1993b) Independent Lives, London, Macmillan. Foundation.

MORRIS, J. (1993c) The Shape of Things to Come? User Led Services, London, National Institute for Social Work.

OLIVER, M. (1996) Understanding Disability: From Theory to Practice, London, Macmillan.

OLIVER, M. (1992) ‘Changing the Social Relations of Research Production’ in Disability, Handicap and Society, Vol, 7. No, 2. pp. 101-116.

OLIVER, M. and BARNES, C. (1998) Disabled People and Social Policy: From Exclusion to Inclusion, London, Longman.

OLIVER, M. and ZARB, G. (1992) Greenwich Personal Assistance Schemes: an evaluation, London, Greenwich, Greenwich Association of Disabled People.

PATTEN, C. (1990) ‘Big Battalions and little Platoons’ 8th Annual Goodman Lecture, Charities Aid Foundation.

RATZKA, A. (1992) ‘Independent Living’ in World Congress 111: Disabled People’s Equalization of Opportunities, Vancouver, Canada, Disabled People’s International.

SCOTCH, R. K. (1989) ‘Politics and Policy in the History of the Disability Rights Movement’ in The Millbank Quarterly, Vol 67, Supp 2, Part 2, pp. 380-401.

WOODHIL, G. (1992) Independent Living: Participation in Research, Toronto, Centre for Independent Living in Toronto,

ZARB, G. and NADASH, P. (1994) Cashing in on Independence: counting the costs of cash and services, London, Policy studies Institute.

 

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