assistants has offered: [In residential care] you had to go to bed at a certain time, meals were at a certain time umm basically it was quite regimented really it was quite institutionalised and it made me feel quite bitter really to be quite honest not being able to live my life how I’m living it now, going out and doing things which is, you know, when I first moved in here I was living life like an 18 year old student, doing all the things that ...[...]... you know here’s me at 40 night clubbing and doing all the things that young people should be doing you know. Ali reflected on the difference direct payments have made to his life. The opportunities offered through living in his own home with support that enables him to do the things he enjoys stand in sharp contrast to the regimentation of traditional services. Ali tells of his desire to live the youth that his traditional residential care home denied him and this is similarly illustrated in how he recruits his personal assistants. Abbey has worked for Ali for over 2 years and describes how she became Ali's personal assistant: Katie: Why did you become a personal assistant? Abbey: Ali asked me if I’d become a personal assistant. Katie: How did you know him? Abbey: Through [speaking up]. I think we’d all been out together to a, it must have been (a restaurant) because we all ended up in (a club) ...[...]... and Ali said well I’m losing one of my staff if you are interested in some extra hours come and be one of my personal assistants so that’s how I ended up being a personal assistant. Katie: So had you done support work before? Abbey: Yep well I worked as a learning and skills advisor at (a charity) for adults with learning difficulties. Ali is clear in what he is looking for in a personal assistant and has often employed people who he has met through his self-advocacy work. This approach to recruiting was a common way for employers to find and recruit personal assistants. Ali identified his care manager, Adele as his supporter. Adele has been described as a very supportive care manager who has been able to re-define her role to enable Ali to make his own decisions (and
what the support is there for as the support planning integral to self directed support (Duffy at al 2010) and person-centred planning was not widely done in the early stages of direct payments. However, this is intended to be significantly altered with the development of self-assessment and support planning (Duffy et al 2010). Georgia identifies herself as the boss, but one who is not getting the ‘service’ she wants from her personal assistants and has been unable to negotiate and manage her personal assistant to come on time. Georgia’s support needs related to her learning difficulty and the support she might need to help manage these relationships appears to have been removed from the equation. Joanne highlights the tight boundaries and critical gaps in support, within the work of the Independent Living Scheme: I do feel they need more support to be employers. I feel, because we are not deemed to be the employer we can’t get involved too much in that side of things. I feel it does need somebody who can do that little bit more for them who’s quite neutral still about it, we do get involved probably as well, but not as much as we are not supposed to. Our remit is not to get involved as much... Some employers felt more confident about their role as employer and all the responsibility that accompanies this. Ali speaks about his sense of responsibility to his personal assistants: I think respect is the most important thing as well because it’s a thing. I think it’s very much a 1:1 thing because they are working with me and I’m their boss basically so if anything goes wrong they come to me to say look this isn’t working or whatever and then if we can’t solve it together then we involve the ILS [Independent Living Service]. Knowing where to go for help and working together to resolve problems is clearly a good approach for Ali to take when managing his personal assistants. Similarly, Benji’s personal assistant talks of how Benji helps her to understand what he would like her to do: [H]e will say yes …[…]… he will just tell me, but he is very nice about the way, you know he will ask, he won’t tell me to do stuff, he will say
the boundaries between ‘informal’ and ‘formal’ care, which is crucial in the course of this paving the way for more inclusive conceptualisations of ‘care’, querying the informal and formal care theoretical divide, but also to add complexity to the use of ‘support’ work. Returning to Debbie and Daniela, they have known each other for several years and have spaces for each other in their lives. Here Daniela and Diana (Daniela’s care manager) describe Debbie’s work very informally: Diana: Yes well I suppose from a care management point of view you can put on your care plan support Daniela to do this that and the other, but you cant think of everything, cos your care plan would be a couple of miles long. Daniela: We even go out for lunch now and again, she takes me everywhere she can think of. Diana: Including her own house for Christmas dinner. Daniela: Yes Christmas dinner and the sister’s birthday party. Diana: It’s almost like a residential service non residentially there is just about everything there would be in a residential service but it’s from somebody who doesn’t actually live with you . …. Diana: Debbie helped with removing the bath and installing a shower and then redecorating it all, Debbie did all that as well, there’s all that contacting plumbers and electricians and all that …[...]... I suppose we are just so lucky that Debbie is such a nice person. Debbie also speaks of her role very fluidly: Debbie: She has asked me to go to the doctors with her today and I’ll go, I wont get paid for it, but I will go with her cos she doesn’t like going on her own and there is nowhere in the care plan to cover currently medical appointments, interviews, reviews, one time I put in and 12 hours I had lost cos I went to the psychiatrist with her, we had a couple of reviews because of the behaviour, 12 hours and I didn’t get paid for it. Katie: Do you do that in your own time?