Personal assistance relationships and disabled people: a qualitative study of emotions, ethics and power

This project will investigate the new phenomenon of personal assistance, which is when disabled people are given funds to employ their own support workers, as an alternative to traditional care. This has become one of the dominant models for delivering support in UK and other OECD countries for disabled people living in the community: more than 100,000 disabled people in UK use personal assistance, with more than 250,000 people working as personal assistants. Personal assistance appears to be cost-effective, and to be highly valued by disabled people because it ensures their control and independence.

In this study, we are interested in the relationship between disabled people and the people who work for them, and the emotions which are involved in personal assistance. What is the difference between personal assistance and traditional social care for each party? Why do people want to work as personal assistants? Do disabled people treat their workers as staff, companions, friends or servants? Are there differences, depending on the gender, age or nationality of the worker or disabled person, or whether the person has intellectual impairment or physical impairment? What happens when things go wrong? There are a range of fascinating social, ethical and psychological issues which are involved in this new form of professional relationship, and it is important to understand the emotional, ethical and power dimensions in order to ensure that things work out well for both parties.

We will begin by doing structured observation with 10 disabled people, including 3 people with learning difficulties, for one week each. This will enable us to see the relationship in practice and map communication, activity and proximity of disabled person and assistant. We will also gather field notes. We will then do in-depth interviews with 30 disabled people and 30 personal assistants, recruited and interviewed separately. This will enable us to hear what people feel about employing or being a personal assistant. Participants for observation and interviewing will be recruited through the Equal Lives disabled people's organization in Norfolk and through an equivalent intermediary organization in London. The volunteers will be selected to ensure that they reflect the diversity of impairment, gender, age, nationality, support package, so far as possible. We will ask open-ended questions, but use a topic guide to ensure that all the interviews cover similar ground. We will then analyze this data, looking for common themes and patterns, to develop a rich understanding of the complexity of the roles, emotions and negotiations involved. We will draw on insights from advisors in social policy, sociology, philosophy and psychology to help understand the data.

The findings of this project will be made public through academic articles, articles in professional and disability publications, and contributions to online, print and broadcast media, as well as through dissemination events and contributions to conferences. This project will help policy-makers, disabled people and professionals understand the complexity of the PA relationship. It will challenge simplistic understandings. It will help improve awareness and also enable the development of training which will help disabled people, workers, policy makers and professionals ensure that possible problems such as exploitation or conflict are avoided. It will thus help ensure that both employer and worker derive maximum benefit from this support arrangement, and that there are fewer obstacles to empowerment of disabled people.

This project is the first large scale British study of the social relationships involved in the personal assistance model. It will cast light on what is actually going on when disabled people employ their own workers. In Norfolk alone, more than 3,000 people use self-directed support. Across UK, more than 100,000 disabled people are employing 262,000 personal assistants. Therefore, this research has potential direct relevance to the lives of nearly 362,000 people. Further afield, all the Nordic countries, Netherlands, Switzerland and other European countries are using the personal assistance approach, and so this project will be relevant to thinking across Europe, as well as in North America and Australasia. There has been very little research on the relational aspects of personal assistance. Independent living orthodoxy says that PA removes emotions from the support relationship, but this seems implausible. As a result of this project, there will be better understandings of the emotions, ethics and power relations which operate in this new form of social care. There will also be understandings of what can go wrong with personal assistance.

TS will lead on impact, working closely with Equal Lives: he has strong track record in policy and media work, including with the Newcastle Beacon of Public Engagement. AS will contribute to general dissemination and to d).

The findings of this project will enable policy-makers and practitioners and disabled people's organizations to develop better rules and procedures to cover the potential problems which can occur.
a) The project will be of direct relevance to policy-makers (Department of Health, Social Care Institute of Excellence, Skills for Care, Local Authorities), because it will inform commissioning of support services and the future of direct payments. Findings will be disseminated to relevant national gatekeepers and publications, and will trickle down to wider users in the policy field at local level.
b) The project findings will be of direct relevance to the social work profession, who are responsible for assessing individuals for direct payments, and for monitoring personal assistance arrangements in UK. Publications from the project will be influential in social work training courses and in-service training for professionals. This will lead to changes in organizational culture in the social care and social work sector. The project team will publish in Community Care and other social work fora to disseminate these insights.
c) The project will also enable the development of better training programmes to prepare both disabled people and their workers for the practicalities of personal assistance relationships and for strategies to avoid or to overcome conflict. At present, disabled people usually prefer their workers to be untrained, so that they can train them themselves. However, it is arguable that core ethical assumptions and emotional ground rules are an important part of the personal assistant relationship, which should be accepted by all parties as beneficial. The project team will collaborate with Equal Lives, Independent Living Alternatives, the PA Users Network, the Personal Assistants Network, and the European Network of Independent Living to develop these training activities, which will be relevant across Europe as well as in UK
d) the project will contribute towards growth of further research in the area of personal assistance relationships, and to the adoption of psychosocial methodologies in disability studies and social care.
This project will thus contribute towards evidence-based policy-making and enhance effectiveness of public services. It will further contribute towards the quality of life of disabled people, their families and their support workers. Finally, the project publications will contribute to public awareness of how disabled people can be empowered to take control of their lives and participate in society.