Phase 1 Funding Proposal

This is an edited version of a bid for funding to support Phase 1 of the photographic project at ‘Bankside Hostel’ which is described on this website. The later work – conducted by Ricky Eagleton and Steve Murphy – grew out of this original project. With thanks to Iain Carson and Kathy Boxall.

Project Summary
Learning disability service providers and managers are increasingly being required to demonstrate that they have consulted with service users with learning disabilities. Whereas there is considerable evidence of consultation and involvement with people with mild or moderate learning disabilities, people with severe or profound learning disabilities have largely been excluded from the consultation process. Despite this lack of consultation, recent changes in government policy have resulted in significant life changes for this group of people many of whom spent much of their lives in long stay hospitals before being moved, in the 1980s and 1990s, to long stay hostels. Government policy is now prescribing the closure of these hostels and this group once again find themselves on the move to ‘supported housing’ in ordinary streets and houses.

The proposed project (‘Our Home’) seeks to engage adults with severe or profound learning disabilities (currently residing in a local authority hostel) and encourage their participation through the use of photographic participatory methods in order to explore their perspectives on this latest policy change. Participants will be given the opportunity to produce a photographic record of the places they like or feel comfortable in and those they don’t like or feel uncomfortable in, and in so doing provide opportunity for expression and communication of significant feelings and memories.

The project is also a vehicle for developing methodological approaches which facilitate the engagement of people with severe learning disabilities as active research participants. The research will explore the organisational features, timescales, and individual actions which promote this engagement, and those which present barriers to it. There is a growing need for better understanding of the needs of service users.

Aim
To facilitate the ‘voice’ of people with learning difficulties during the transition from group living to supported housing.

Objectives

1. To produce an accessible record depicting tenants’ views of their current home.
2. To develop photographic participative research methods with adults with learning disabilities.
3. To raise awareness and understanding of photographic participative methods with people with learning disabilities amongst learning disability service users, practitioners, researchers and policymakers.

Research questions

1. What do tenants with learning disabilities have to ‘say’ about their current home (the hostel)?
2. How can their preferences and views about the hostel be elicited and recorded?
3. How far does the taking and viewing of photographs enable people with learning disabilities to make statements about their preferences with regard to accommodation, domestic routines and organisation?
4. How do the outcomes of this process depend on timescale, presentational features and interactional conditions?
5. What can other participants, including hostel staff, other people with learning disabilities, practitioners, researchers and policymakers learn from this project?
6. What could be put in place in order to continue to learn from this kind of approach?

Background
Taking account of the views of service users is seen as an increasingly essential step in the management and operation of services for vulnerable groups (DH 2001). Research funders (for example the Joseph Rowntree Foundation) are also increasingly requiring the involvement service users in research. In the area of learning disability, discussion of user involvement has tended towards relatively articulate people with mild or moderate learning difficulties (Kiernan 1999). For those service users with severe learning disabilities who may also have communication difficulties or challenging behaviours, there has been little systematic research into methods by which this might be carried out.

Following publication of the White Paper Valuing People (DH 2001) in March 2001 there have been substantial changes within local authority services for people with learning disabilities. There have also been significant changes in other related areas. For example, implementation of the Care Standards Act 2000 and the government's Supporting People programme and have completely overhauled the systems, structures and funding by which vulnerable people are housed and supported in the community. This has had major impact upon people living in hostels or elderly people's homes as there is now considerable financial disincentive to local authorities continuing to run such establishments. This has led to the wholesale planned closure of homes and hostels throughout the country.

Whilst the new arrangements for people with learning disabilities to be supported in their own homes are welcomed and the closure of hostels for people with learning disabilities long overdue, this represents a major change in people's lives. It also marks a significant shift in policy and services for people with learning disabilities in the UK . A parallel development was the running down and closure of the large 'mental handicap' hospitals in the 1980s and 1990s. During this period, many of the patients resettled from the large institutions returned to smaller (up to 24 beds) local authority hostels in their 'community of origin'. Many of these same people now face another move and are again living examples of the impact of changes in central government policy on the lives of people with learning disabilities.

The Proposed Project
The proposed project (‘Our Home’) seeks to provide a means for hostel tenants and the staff who work with them to record this latest development from their own perspectives. The context of this small-scale study is a long stay hostel which is due for closure in the next two years. This will be a major event for staff as well as tenants, many of whom have been there for twenty years or more. The hostel manager has expressed interest in the project though it has not, at this stage, been discussed with hostel tenants. ‘Our Home’ will include tenants and staff in a project to use photography as a means of engaging tenants (adults with severe learning disabilities) in thinking, reflecting and making statements about the hostel – their home. The process of taking pictures is an opportunity for people who are often caste in a passive role to be creative and make statements about their own needs and desires. The use of photography as part of a participative research process with children has been explored in several recent projects in Educational Support and Inclusion (Howes and Kaplan, 2002, Schratz and Steiner-Löffler, 1998). A related project in Canada used video with disabled adults (Krogh 1991) though this did not include people with learning disabilities. The proposed project seeks to build upon these methodological approaches by engaging people with severe learning disabilities as active research participants through the use of photography and thus constitutes an innovative link between the disciplines of visual anthropology and disability studies.

The research will explore the organisational features, timescales, and individual actions which promote this engagement, and those which present barriers to it. Participants will be given the opportunity (with support where necessary) to take photographs of the hostel and its grounds in order to produce a photographic record of the places they like or feel comfortable in and those they don’t like or feel uncomfortable in. They will be invited to look at photographs presented in a variety of different ways, in different sizes, colours and on different media to see if there are changes in the comments, emotions and feelings that they evoke. They will have opportunities to look at them individually and/or in groups the day after they have been taken, and again after a period of weeks and months. Comments (however conveyed – for example, expressing non-verbal interest in a particular photograph) will be recorded and used to produce ‘captions’ and annotations for the photographs. All participants will receive an annotated ‘photo record’ of the hostel and an audiotape of the ‘captions’. Audiotape descriptions of the photographs will also be produced so as not to exclude tenants who do not read or who have a visual impairment.

Support for research: Some of the more profoundly disabled tenants may need support in order to participate. Consultants with mild or moderate learning disabilities from local self-advocacy groups will be employed on a sessional basis to offer such support. Students studying on the BA in Learning Disability Studies may also be interested in supporting tenants and consultants. In addition, a support group will meet regularly to review progress in the research and share responsibility for writing and organisation. This will include a research associate with broad experience of qualitative research and a lecturer on the BA who has previous experience of leading a consultation project in the hostel concerned (Kathy Boxall).

Ethical Issues
Each participant will receive an annotated ‘photo record’ and ownership of photographs will be invested with the participants and the local authority. The production of the photo record is a vehicle for engaging and involving adults with severe learning disabilities, any publications resulting from the project will explore methodology rather than the photographs themselves. Illustrative photographs would only be used in publications with the permission of the local authority. In addition, no identifiable individual would be included in any published photograph without their express permission.

References
DH (2001) Valuing People: A New Strategy for Learning Disability for the 21 st Century , London , Department of Health.

Howes, A. and Kaplan, I. (2002) Seeing Through Different Eyes: An exploration of school culture through participative photography , FILTER Image-based resource for teaching and learning, http://www.filter.ac.uk/

Kiernan, C. (1999) Participation in Research by People with Learning Disability: Origins and Issues, British Journal of Learning Disabilities , Vol. 27, No. 2, pp43-47.

Krogh, K. (2001) Video Action Research: Possibilities as an Emancipatory Research Methodology and Reflections on a Health Policy Study for People with Disabilities, paper presented at Democracy, Diversity and Disability, Conference of the Society for Disability Studies, Winnipeg, Canada, June 20 - 23.

Schratz, M. and Steiner-Löffler, U. (1998) 'Pupils Using Photographs in School Self-evaluation', in Prosser J. (Ed.) Image-Based Research: A Sourcebook for Qualitative Researchers . London , Routledge Falmer