Conclusion

Personal assistance is empowering and flexible and different from other forms of care. But we hope we have shown that it still involves human relationships, emotions, values and all the complexity which this implies.

There are different kinds of personal assistance relationships, and neither in our research nor in any other literature can we find a single, ideal, perfect way of handling the relationship. What this means is that people have different expectations of what the relationship should look like, and how you should feel about the person you are working with.

Our recommendation is that people should be as explicit as possible about what they are looking for. They should discuss roles, boundaries, relationship upfront, so there is no misunderstanding. Some of the exercises in this training are designed to make you think a bit more about what matters to you, and where your red lines are.

It might be worth you thinking again about what PA relationship you are looking for.

Has it changed, as a result of this training course? Are you clearer about what works for you? People change – relationships develop over time. Often, it’s best to start more formal, and then let things become informal over time. But it’s still important to discuss how things are for the other person, who may be less comfortable with the situation than you are. For example, a PA worker may feel confused at the lack of clear direction given to them; a PA employer may feel frustrated at his or her lack of control over the assistance that is provided.

Time also makes people more effective in their roles as employers and workers. Personal assistance can be difficult, particularly if you are employing somebody for the first time. The disabled person will be learning all sorts of new skills, as an administrator, but also as a manager of another human being. Equally, the worker will be learning to work in a very different way to other parts of the care sector. Everyone makes some mistakes along the way. Our research has shown that people become more accomplished and successful over time, as they work out strategies and ways of being with each other.

In other countries, different PA relationships have been achieved with different structures. For example, in Norway, disabled people are often the manager of their PA, whereas the PA is employed by a cooperative or by the local authority. This frees up the relationship from the employment aspects, while still retaining control by the disabled person. In Sweden, there is a system of advocacy which enables people with intellectual disabilities to be supported by personal assistants, while external advocates ensure the quality and safe-guarding aspects.

The goal of this training has been to ensure that people make fewer mistakes; that they are not discouraged from being employers, or being workers; that they understand the PA model better, and they find a personally successful way of operating personal assistance. The work that the personal assistant does has the potential to transform lives and enrich our society. We firmly believe that the PA model is a radical and exciting way of supporting disabled people in the community, which avoids dependency, and ensures independent living.