Research Policy and Planning: The journal of the Social Services Research Group – Vol 19 (1) 2001
Working with Disabled People in Consultation and Research
Di Barnes, Research Fellow, University of Durham; Marilyn Kendall, Research Fellow, University of Edinburgh.
When a consultation exercise is designed with disabled people, the result will be influenced by all the participants’ experience of consultation and their knowledge and understanding of research. The exercise will also be a product of a particular place and time. These influences are explored in a case study carried out by the authors in partnerships with disabled people; they adopted a pluralistic and flexible approach to consultation, which gave information as well as sought it, and included a commitment to developing community skills with an eye on succession.
Service commissioners and providers are required to consult disabled people about the provision of community care. The aims of this paper are to explore ways in which the knowledge, interests and understanding of participants of consultation exercises contribute to the consultation process. Reflecting on a case study with which the authors were involved, it examines the opportunities and pitfalls of attempts to undertake participatory research within the uncertain, and often conflicting, discourses of consultation, social research and disability.
In the case study, the invitation to undertake the consultation was commissioner-led, originating from the local health authority and social services department. It was located within the officially sanctioned government consumerist model of service user involvement (DoH, 1989; Lankshear and Giarchi, 1995), which focuses upon obtaining users’ views on services in order to both legitimise professional roles and to better tailor services to meet local needs. However there are other models of consultation, which lie more within what has come to be known as the democratic approach to user involvement (Barnes and Shardlow, 1996; Beresford, 1992), which are service-user driven and focus on a broader citizenship agenda. These two broad approaches may both conflict and overlap.
Those engaged in consultation with disabled people should be aware of the dangers. Consultation can itself become part of the oppression of disabled people through the methods it adopts, and through findings which may continue to silence or misrepresent their experience (Oliver, 1992). To ensure against this, an open-ended, exploratory and flexible approach can be adopted which employs non-hierarchical research relationships, but this might well lead to findings which are concerned with much broader issues than those defined by the funders, and which the contractors have little power to address (Shakespeare, 1996).
In practice, the participants of a consultation exercise can rarely set the boundaries. These have usually already been set by the funders/commissioners. At a minimum, contracts will usually specify time and resource limits and a pre-defined agenda. Therefore, from the outset, researchers can be caught between competing demands (Lloyd et al, 1996).
We do not want to suggest that there is a single solution to these problems. A consultation exercise cannot be designed from a purely theoretical standpoint. Instead it has to be tailored to the needs of a defined group of people in a particular place. Also, it will be the product of a specific time, while ideally remaining flexible, reflexive and self-critical (Barnes, 1996).
In the case study described in this paper we aim to illustrate how we attempted to address these issues. The consultation exercise took place in a small borough in the North East of England that had recently become a unitary authority. Disabled people in the borough had had mixed experiences of consultation in the past, and although many of them had been active in campaigning for better services, they had not become politicised, nor had they aligned themselves with the national disability movement. A local disability association had been set up to act as a forum for disabled people. For over 10 years this organisation had been successful in enabling the views of disabled people to be heard, but like many agencies in the mid-1990s (e.g. Hoyes and Means, 1993) it became a victim of its own success. Having established a need for services, it was asked to set them up, so being forced to shift its focus from campaigning and consultation to service delivery.
The timing of the consultation exercise was crucial to its subsequent content and design as it took place at a time of considerable change (Craig and Manthorpe, 1999). The statutory authorities were keen to use local government reorganisation as an opportunity to rethink the way existing disability services were organised and delivered, and to introduce new policy initiatives such as Direct Payments. Meantime, in the disability association, new personalities were bringing their own ideas about developments.
The origins of the consultation exercise
From the stage of recognising the need to consult disabled people to the implementation of the exercise, a series of negotiations can be traced. The initial negotiation concerned the decision to consult. The statutory agencies recognised the need to undertake a consultation exercise only after their plans for change had been firmed up and were already meeting opposition from disabled people. Therefore, they proposed a broad-based consultation covering all their service implementation plans and they approached the local disability association to undertake the work.
Members of the Association were very wary; they had enough knowledge and experience of consultation in the locality to be aware of the difficulties. Also, they were conscious of the conflict of interests presented by their current role as provider of some of the services under review, and their hopes of winning the contract for another. They asked the advice of the authors (researchers at a local university) who they felt would provide research expertise and an overview of policy debates. We agreed to become involved if we could work with a team of disabled people who would bring local knowledge, and their experience of disability.
Consequently, the consultation was planned to work through a series of partnerships, with the researchers taking responsibility for overseeing the work but decisions on project design, implementation, analysis and dissemination being taken jointly with partners. First, the researchers formed a partnership with a group of four disabled people who were members of the disability association and volunteered to work as a team for the duration of the exercise. Second, partnership with the disability association itself enabled resources to be accessed, such as its knowledgeable and experienced staff, a database of disabled people in the town, accessible town-centre offices and efficient administrative support. The third partnership was with a Steering Group established specifically for the exercise. It was composed of representatives of the statutory authorities and of the other two partnerships. In addition to guiding the consultation, it was expected that the Steering Group would take forward recommendations.
Negotiating the approach
Having identified willing partners, we submitted a successful bid for funding to the statutory agencies and, inevitably, the funding proposal began to define the agenda for the exercise. For example, it specified the exercise was to be completed within six months, it would have a fixed budget and would support the input of a researcher for two days a week. The scope of the exercise was defined as seeking the opinions of disabled people of working age on four proposed changes to local services, but also on how they wished to be involved in future service development.
This process of deciding on the approach is best described as ‘negotiation’ because each partner brought his/her own perspective, skills, experience and knowledge to the discussions. In seeking the most appropriate ways in which to achieve the project’s aims, participants were made aware of the impact the choice of methods can have on outcomes and the link there must be between method and findings. You can find only what the methods you have chosen enable you to see. The result was an eclectic set of principles and social research methods. These included:
- The consultation would work to a social model of disability but would respect the important contribution health services can make to the lives of disabled people.
- The aim would be for inclusion. The consultation would include all disabled people.
with a physical impairment and/or sensory loss, aged between 18-65 who lived in the Borough. (Older people were excluded at the request of the funders, because the exercise focused on services for adults up to the age of 65). However, both users and non-users of services would be approached, as well as individuals involved with both general and specialist disability groups and the families and friends who support disabled people living at home.
- Reciprocity would be sought through recognising that learning is a two way process. The researchers had much to learn from the volunteer team and hoped that in return the team would be able to gain experience of, and become skilled in, consultation.
- Sustainability would be a goal as the researchers were very aware that six months was too short a time to achieve much beyond networking and fact-finding. The task of establishing an on-going consultation process would be left to others.
- The exercise would respect difference and so give participants a choice of ways in which they could engage, and be supported. Opportunities to raise additional issues should be offered.
- Level of consultation. User involvement has often been portrayed as a ladder, with rungs ranging from, at the lowest level, a one-way flow of information from service providers aimed at gaining support for existing services, through to a top level at which control over services passes to users (e.g. Croft and Beresford, 1993). This exercise would be at an intermediate level of open communication between service planners and users. Also it was hoped that the consultation could offer opportunities for enhanced user empowerment in the future.
- Qualitative methods would mainly be employed, since these were best suited to a project such as this, which aimed to explore and better understand local users’ experiences and expectations of services and consultation. In addition, the research would aim to adopt a participatory approach, valuing the knowledge, skills and expertise of all participants and avoiding hierarchical research relationships.
Three methods were selected: a postal survey, a series of focus groups and individual interviews.
The postal survey
A survey approach was chosen to enable information to be collected systematically from a large number of people at the same time as information about the proposed changes was sent out. With the limited resources available, the survey had to be postal and designed for self completion but, because some people dislike questionnaires, recipients were given the option of being interviewed on the telephone or face-to-face.
The questionnaires were drawn up with the Volunteer Team and produced together with leaflets and information sheets in a ‘Consultation Pack’ (see Fig.1). The packs were made available in large print, in Braille and on computer disk.
Figure 1: The Consultation Pack Contents
- Letter of explanation about the consultation exercise and the researchers
- General leaflet about the consultation project
- Four information sheets, covering Direct Payments, Day Services, Disability Options and Information Services, including information on how the services could be accessed
- Questionnaire for disabled people covering the agreed topics
- Separate questionnaire for carers/family
- Glossary sheet, explaining terms used in the pack which may not have been familiar to service users and carers
- Contact sheet for people to fill in and return if they wished to receive more information and/or take part in the consultation in other ways such as being interviewed, talking on the telephone, joining a discussion group
- Stamped and addressed envelope.
The Pack was initially distributed by means of the Association’s contact list and the Social Services database. The Association and Social Services Department concerned carried out all the necessary work. No names or personal information were released to the researchers and Volunteer Team. The researchers contacted only those individuals who got in touch with them by phone or by returning the contact sheet in the Consultation Pack.
The local media were used to invite people who were unknown to services to apply for a Consultation Pack. The manager of the Association wrote an article in the local paper and spoke about it on local radio. Mention was also made in the Talking Newspaper. Local groups with an interest in disability were contacted and invited to respond to the survey either collectively or individually.
The focus groups
To explore issues in greater depth, a programme of four weekly discussion groups was held, focusing on one of the main topic areas at each session. A further event for families and friends of disabled people gave them an opportunity to raise concerns, and to discuss future consultations.
The programme, and information on the available support arrangements were publicised in the Consultation Pack and in a leaflet. A timely Citizens Advice Bureau mail out was also used to reach a further 250 people.
The discussions were chaired, wherever possible, by a member of the Volunteer Team, facilitated by a researcher, tape recorded with the permission of all present, and transcribed for analysis. As the groups were planned to be informative, they were attended by staff as appropriate, with the understanding that staff would withdraw from the discussion if and when participants wished them to (an option never taken up). The Volunteer Team prepared tentative agendas in advance but each group was encouraged to rewrite it and to agree groundrules at the start in order to promote their own sense of ownership of, and control over, the ensuing discussions (Barnes, 1995).
Recipients of the Consultation Pack were offered the option of a face-to-face or telephone interview with the researcher. These were unstructured and designed to enabled people to talk in their own time and terms about their experiences.
Overall 165 disabled people and 40 carers took part in the exercise.
Response to the Consultation Pack
Informal feedback suggested that the information provided in the Consultation Pack was welcomed, but few people completed the questionnaires. Of the 350 Consultation packs distributed only 60 completed questionnaires were returned, a response rate of 17%. Respondents requesting either a telephone or face-to-face interview increased this to 22%. Although the pack was produced in various formats, the option of having it on computer disc was not taken up, and the Braille version did not produce any response.
Undoubtedly, the questionnaire language, structure and content frustrated some people. Their answers did not fit the boxes, or they were not concerned with the issues being investigated:
I am desperate to see improvements in the services, but if the questionnaire is the sum total of your scope, I regret that your efforts are doomed to failure before it gets off the ground.
Some users preferred to discuss a range of issues over the phone, or during face-to-face interviews. In total the researchers interviewed 17 people in their homes and spoke to 9 individuals on the telephone. More interviews were requested but they could not be arranged in the time available. Very useful information was gathered in this way but clearly the time needed for individual contact should not be underestimated.
Of the 60 people who responded to the questionnaire, 66% expressed an interest in becoming involved in the planning and development of services, 52% would be happy to be consulted by survey (see Fig 2). The results show the importance of providing a mix of methods to suit a range of needs.
Attendance at the groups ranged from 10 to 16, with 25 participants in total. There was a core of 7 keen contributors who attended the whole series. Participants spanned all ages, and had a range of impairments and family situations. Contrary to expectations, they chose to make little distinction between carers and service users; carers chose to attend discussions intended for disabled people and vice versa.
People came to the groups with different points of view, but were very positive about the value of the time spent in discussion. Factors which contributed to the success of the groups were: an accessible venue with space for everybody (and their dogs); immediate payment of transport and personal assistant costs; help in arranging transport as accessible taxis can be difficult to book; the serial nature of the discussions – people got to know each other and came to respect each other’s perspectives and concerns; information from staff working in the area helped focus the discussion; facilitation ensuring the discussion was lightly led through an agenda.
Discussion groups cannot be expected to come up with all the answers, but they do provide opportunities for people, who can get out, to express their views, and reflect on the views of others. It is not always easy to keep to the agenda as participants will have a range of interests and understanding, but such groups can be enjoyable and provide an interesting way for people to start to work together to achieve shared goals and learn about issues which may not be familiar to them.
An additional discussion group was held at the local Deaf Club. The Deaf community had been largely excluded from the consultation exercise because it was conducted in English, and for the many Deaf people who use British Sign Language (BSL), English is their second language. Therefore, the Club invited a researcher to come and explain the exercise in a special session, run with interpreters. Although the discussion was wide ranging, it kept coming back to issues of communication because of the very limited use of BSL in our society. To gain the views of young people, the researcher attended the local Technical College. A sympathetic lecturer there was aware of the project and invited the researcher to come and discuss it with the students. As a result four students with disabilities volunteered to take part in individual interviews.
The response to the exercise could be regarded as being very positive given the context of cynicism and disillusionment associated with previous local consultations:
The same old things come round again and again. They must know what we want by now, but there is never any outcome from it.
Still more worrying for some disabled people was the fear of reprisal resulting in a loss of services or in the way they would be treated if they spoke out.
I do speak out about things I don’t agree with. It doesn’t make for an easy life, or make you very popular. But I have found it helpful to talk to you (the researcher) and get it off my chest.
The mix of methods designed to meet a range of needs was appreciated:
This consultation has been good because it included questionnaires and telephone interviews etc. It went out to individuals and didn’t just rely on one person speaking for me. I worry about that. Some people don’t like attending groups. They’re not comfortable in them, but they’ve still got important things to say. There are some issues that you could never get across in groups.
But a consultation exercise on this scale could not hope to find solutions to the complex issues under review. More time was needed to move from exploratory work to problem resolving. Also disabled people did not want to be restricted to the limited agenda. For them the issues under discussion led on to others, such as, transport, accessible housing and appropriate employment which looked beyond the responsibility of social and health care provision to civil rights and the effects of our disabling society.
In order to achieve some of the changes they wanted, participants in the consultation made clear their own responsibility to act together:
Consultations appear from time to time, but not when we want them, or what we want to be consulted about, or in language that means much to us. We’ve got to get round to setting our own agenda for consultation. Then it will be more meaningful.
Participants made it clear that they would like to set up an on-going disability consultancy group that could gain credibility and develop an effective collective voice for disabled people in the Borough, making the most effective use of the limited energy some people may have. A list of ‘do’s and don’ts’ was drawn up specifying how committee representatives should be treated (Fig. 3).
We found working with the volunteer team of disabled people very rewarding and helpful. Their practical advice at the planning stage, and their perspectives on interpreting the findings were particularly appreciated. At the same time, it was frustrating that the team had very little time to meet and get to know each other. However, the principal disappointment was the difficulty with getting the team involved in doing rather than advising on the work, and in achieving the two-way learning that had been planned. The researchers learnt a great deal from the team, but opportunities for the volunteers to learn new knowledge and skills about research were limited.
There was mixed response to the use of university researchers to facilitate the consultation exercise. The researchers were valued as outsiders as nobody felt they had to be defensive about voicing their opinions, but the researchers’ experience of disability was questioned, as they had no visible disability.
Many consultation exercises mean working in less than perfect situations, but even within these circumstances there are opportunities. The outcome must not simply be measured in terms of the issues resolved. This will lead to disappointment. The processes of negotiation, consultation and discussion must also be valued.
The consultation described here helped people move on. The agenda moved beyond a service focused one in which individual views were sought for service planning purposes, to a wish to establish an active and supported group able to begin to set its own agenda about maximising quality of life and confronting social exclusion and demeaning professional attitudes.
When researchers share partnerships with individuals who do not work within the same constructs of consultation, research and disability, care has to be taken to ensure they do not impose their own frameworks. They may not be able to follow their emancipatory vision. They may have to accept a pragmatic compromise but they must remain aware that they could be part of the continuing oppression of disabled people. However, short-term pieces of work, which are participatory rather than emancipatory, can work towards broader agendas for participants, service planners and policy makers.
Fig. 3: Best Practice Points
Representatives must understand the needs of disabled people. There should not be a single token representative on any committees.
Proper support should be available, such as adequate prior notice of meetings, distribution of the appropriate papers, funding for expenses, accessible venues, interpreters and personal assistants.
Representatives should be free to choose their level of participation, and attendance should be respected.
Disabled people must sit on sub-groups where decisions are made, as well as main committees.
Appropriate, prompt feedback on outcomes must be given.
Representatives must be properly briefed before the meeting, know what the agenda will be about, and have time to discuss it with others.
‘All too often we’re asked to make the decisions without any proper information and time. I’m very worried about that.’
Disabled people should be involved at an early stage before decisions are made.
‘Very often the decisions are made and we’re asked what we think of them afterwards, when it’s too late. I’d like to see us involved in the menu planning, not just left to chose off their menu.’
Involvement should include ensuring that action is taken and progress is made on decisions / recommendations.
Care should be taken that information is written clearly and specialist terms are avoided.
‘It’s all in a totally foreign language for me.’
The authors would like to thank all those who took part in this exercise and contributed so much to its success.
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