Skills for support: personal assistants and people with learning ...

British Journal of

Learning Disabilities The Oﬃcial Journal of the British Institute of Learning Disabilities

ORIGINAL ARTICLE

Skills for support: personal assistants and people with learning disabilities Val Williams, Lisa Ponting, Kerrie Ford and Philippa Rudge (Skills for Support Team), West of England Centre for Inclusive Living, The Vassall Centre, Bristol, UK and Norah Fry Research Centre, University of Bristo. (E-mail: [email protected])

Accessible summary

• This paper is about how people get good support. This can happen when you have a direct payment, and you have your own personal assistant (PA). But you need to have a good PA, who knows how to communicate well. • Two people with learning disabilities worked in the research team on this project. The team made videos of people with learning disabilities working with their PAs. • It is important that the PA knows how to support you well. For instance, they should treat you with respect. This means that you can tell them what to do. They should talk to you like an adult, and listen to what you want. They should not rush you. • A good PA will remind you that you’ve got a choice. They will help you be in control of your choices, but they won’t force you to make a choice. • PAs sometimes have to give you advice. But that should be on your terms. It’s good to have a friendly relationship with your PA. It’s a bit like team work. • People with learning disabilities can help to train their own PAs. This project made a training pack, with a DVD.

Summary

For people with learning disabilities to have control over their lives, the quality of their support staff matters. This paper reports on an inclusive research study, which used video analysis to study the communication skills of personal assistants (PAs) who worked with people with learning disabilities. The findings reveal some of the fine detail in the strategies these PAs used, to show respect, support choices, and give advice. They were able to step back, to listen and observe the person with learning disabilities, and to use good, open body language. They also gave people time, built up a close relationship based on shared interests and activities, and they talked with people in a friendly, adult way. It is difficult to support people to manage their lives, and team work is important. People with learning disabilities also have to play their role in the relationship. This research produced training materials that will help people with learning disabilities to train and support their own PAs. Keywords

Communication, direct payments, inclusive research, learning disabilities, staff

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 38, 59–67

doi:10.1111/j.1468-3156.2009.00570.x

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Introduction and background One of the main goals of the English Learning Disability strategy ‘Valuing People’ (Department of Health 2001) was that people with learning disabilities should have more choice and control in their lives. The renewed strategy ‘Valuing People Now’ (DoH 2009) takes up this theme under the priority goal of ‘personalisation’: Valuing People said that people should have much more choice and control over their lives, services and supports... People should increasingly get direct control of services – either through a direct payment to purchase their own services and supports or control over the kind of support they receive. [DoH 2009: 5.1.1, p. 23] People with learning disabilities consistently express satisfaction at having gained choice and control through direct payments (Gramlich et al. 2002; Beadle-Brown 2005; Williams & Holman 2006). However, we also know that there is more involved in the concept of ‘control’ than simply changing the arrangements for employing staff. People with learning disabilities have a long history of being treated without respect – in fact, as if they needed to be ‘controlled’ (Welshman & Walmsley 2006); they are widely thought of as incompetent (Simpson 1995), childlike, and irresponsible, especially in relation to adult decisions. There are many tensions which services have to deal with, as staff have the task of supporting people to live fuller lives in the community, and engaging them in ‘respectful, mutual exchanges’ (Finlay et al. 2008). At the same time, staff are responsible for the safety and welfare of the people they support, and so can face considerable tensions in delivering ‘empowering’ support. In the context of residential homes, Mansell & BeadleBrown (2004), Mansell et al. (2003) conclude that it is staff practices alone that make the difference to people’s choices and engagement, while the concept of person-centredness has become a cornerstone of policy since ‘Valuing People’ (Adams et al. 2006; Parley 2001). However, support staff can still get caught in institutional ways of interacting with people with learning disabilities (Antaki 2001; Jingree et al. 2006). With the moves towards individual budgets for people with learning disabilities (DoH 2006), we urgently need to know more about how all support staff can move towards new styles of working with people with learning disabilities (Williams et al. 2008). We need to understand what it is about ‘person-centredness’ that actually makes a difference, and we need to understand how these things are achieved in everyday interactions with people with learning disabilities. Issues about staff practices and person-centredness were at the heart of a recent inclusive research project, funded by the Big Lottery and carried out by the Norah Fry Research

Centre, University of Bristol in partnership with WECIL (West of England Centre for Inclusive Living) during 2005– 2007 (Williams et al. 2007). This paper provides an outline of some of the key findings about support staff skills, focusing on the final stage of the study, which used video interaction analysis. The overall goal of the ‘Skills for Support’ study was to find out what makes ‘good support’ from the point of view of people with learning disabilities themselves, and the final video phase aimed to examine in depth the communication between personal assistants (PAs) and people with learning disabilities. This paper is based entirely on this final phase of the study, and is about the communication skills that PAs can draw on, in providing good personalised support.

Methodology in ‘Skills for Support’ Skills for Support was an inclusive project. Two people with learning disabilities, Lisa Ponting and Kerrie Ford, were employed as co-researchers by a disabled people’s organisation (West of England Centre for Inclusive Living: WECIL), and they worked in a team with the lead researcher, Val Williams. This is one variation on a model of inclusive research (Walmsley & Johnson 2003) that has evolved from other work carried out at Norah Fry Research Centre (Williams et al., 2005; Tarleton et al. 2004) and elsewhere (Walmsley 2001). The structure and positioning of the research team were important factors in ensuring that the research was firmly grounded in the views and expertise of disabled people, and particularly people with learning disabilities. The team approach ensured that the two co-researchers had an experienced research colleague as well as support; and the project also involved a planned approach to skills development for the whole team. Although some structured research training was provided, experience in this type of project has indicated that skills are best learnt in a more ‘on the job’ fashion. However, an initial session was held to focus on respect in research, which is the key to understanding ethics. The project in fact received ethical approval from a University ethics committee, and it also had the guidance of a steering group consisting of 75% disabled people, and hosted by WECIL. A further practical research training session was held on interview skills, followed by two sessions about communication, since this was the topic of the final stage described here. One of these sessions took data from Rapley’s (2004) book, in which support staff were shown to treat people with learning disabilities as children. By acting out the scenes, our co-researchers were able to suggest other ways of approaching support, and this helped to sensitize them to some of the subtleties and fine detail in analysing interaction. There were three stages in the ‘Skills for Support’ research. In the first stage, a survey was carried out of PAs who worked on a one-one basis with people with


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learning disabilities (N = 69). The results of the survey are reported elsewhere (Skills for Support Team 2006) One of the main findings of the survey was that PAs very seldom had any support or training delivered as part of their current role. Therefore, this seemed to be an important issue to follow up in subsequent stages of the work. Additionally, a focus group was convened at the beginning of the work, to help define the parameters for the study, including key ideas about ‘good’ and ‘bad’ support. This group, consisting of experienced self-advocates from around the UK, remained active in the project as a whole. In the second stage, we carried out interviews with 19 people with learning disabilities, their PAs managers and family members, in five different areas of England and Wales. The third stage of the study was the video stage, in which we observed and filmed fourteen people working together with their PAs. In all cases, and at every stage of the study, we considered it of great importance to approach people with learning disabilities directly with accessible information about the project, so that we could gain informed consent. This project took place before the Mental Capacity Act (MCA) was in place; however, the two people who were judged incapable of giving independent consent in effect did follow the provisions of the MCA, since they had consultees who made a ‘best interests’ decision on their behalf. Most of the participants for the video stage offered to take part at the end of the interview phase, and others were recruited from the project focus group. The success in obtaining agreement from participants for the videos was no doubt influenced by the peer approach, with co-researchers identifying directly with people with learning disabilities in the field. Although this article will not present detailed analysis, the methodology used in the final video stage of the study was a version of conversation analysis (CA) (ten Have 1999; Antaki et al. 2007; Finlay et al. 2008; Williams 2005). This type of work is well placed to examine the precise ways in which institutional identities can be constructed during talk (Antaki et al., 1998). CA depends on the collection of data which is as close as possible to ‘naturally occurring’. The whole team was involved in data analysis; video data are essentially accessible, in a way that audio data are not. Although conversation analysis using video may be considered a technical and academic skill, there were many ways in which Lisa and Kerrie made a contribution to analysis. They had the first task of identifying significant extracts from the videos, with accessible proformas to note down their views. Transcription and initial analysis were then carried out by the lead researcher, followed by analysis sessions, in which the whole team discussed the findings, and watched the video extracts again to check the ideas in the analysis. Although this was a very detailed task, we found that the fine-grained level of analysis was meaningful to the co-researchers, who have life experience of the types of interactions we had filmed. For instance, on one occasion,


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one of the co-researchers noticed the way in which a support worker used a pencil to gesture to the person with learning disabilities in quite a teacher-like way. On another occasion, they noticed that a person with profound learning disabilities only responded when the supporter said her name from across the room, while she remained passive when spoken to close-up. The results of this project were disseminated via a written, illustrated report aimed at practitioners, managers and policy-makers. This is available electronically (Williams et al. 2007). In a project relating to personalised support, however, we wanted to go beyond a limited academic approach to dissemination. Therefore, we produced a training pack consisting of a DVD with extracts from the video material, and photo stories to illustrate good and bad support. All these materials were designed for people with learning disabilities to train their own PAs, and the final results of the team approach to analysis are to be seen in the training DVD that is a part of our training pack (Skills for Support Team, in press). All the videos were made with people with learning disabilities who had one to one assistance. In all, fourteen pairs took part in videos, on nineteen different occasions (see Table 1). We collected 20.5 h of video data, with a good spread over many different activities and interactions, both inside and outside people’s homes. Two of the fourteen people with learning disabilities did not use words to communicate; one of those was an active young man (V3–V7), the other was a young woman with profound physical and sensory impairments (V12 and V13). The other twelve were all more able to express themselves verbally; many had additional physical and/or sensory impairments (e.g. V10). Eleven out of the 14 participants were men, which could partly be attributed to the prevalence of men over women as direct payments users. In this paper, all participants are given assumed names to preserve their anonymity.

Findings When analysing the video data, the research team decided to group the findings into five categories, all of which expressed important features of support for our two co-researchers. The five ‘big’ themes were: (i) respect; (ii) choices; (iii) friendliness; (iv) giving advice; (v) support to speak up. These were in effect the outcomes that the co-researchers identified as most valuable in good support. However, each of these themes merged with others in the actual performance of support. For instance, it was sometimes possible to analyse how a PA gave good advice by softening it with some friendly behaviour which helped the person with learning disabilities to trust them. Helping people with choices had to be done in a respectful way, and so on. We felt that it was important not to give a ‘cookbook’ of tips for supporters, as good support has to be sensitive to the individual, and cannot be exactly prescribed. We

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Table 1 Main activities on each of the skills for support videos Video

Main activity or activities

PA employed through direct payment

Living arrangement

V1 V2 V3 V4 V5 V6 V7 V8 V9 V10 V11 V12 V13 V14 V15 V16 V17 V18 V19

Domestic – household chores Socialising – going out to cafe´ Attending dance class Attending sensory relaxation group Going shopping Preparing and eating a meal Going out to youth club Going out to leisure centre, then bowling in pub Arriving from a train journey, then checking into a hotel Domestic – making coffee, talking, cleaning up Personal care – having a shower Attending a drama group Having supper at home Planning for shopping, and going shopping Checking e-mails, then going to the bank Writing a letter to a relative, then preparing supper Planning for shopping, and going shopping Buying tickets for rugby, shopping then going to library Preparing for rugby match, then going to rugby

Yes

Rented flat

Yes

Own house

Yes Yes Yes Yes No Yes No Yes No Yes Yes Yes

(agency)

Parents’ home Rented flat Rented flat Sheltered accommodation Parents’ home

(agency) (Same participant as V12, different PA) (agency)

Rented flat Own flat Rented flat Own flat Family placement (carer’s home) Group home

PA, personal assistant.

analysed communication skills as they occurred within the flow of real-life sequences of interaction. However, it was sometimes possible to identify particular strategies in communication which cut across all the themes, and were often successful. For instance, these included physically stepping back, ensuring an adult tone of voice and following the lead of the person with learning disabilities. Some of these strategies will be explored further below, in actual examples from three of our themes – respect, choices and giving advice, which have been chosen because they illustrate some of the core functions of PAs working with people with learning disabilities.

key moments, though, the PA came forward to do something or to offer assistance. Simon and his PA were very well ‘tuned in’ together, and their movements seemed to reflect this. For instance, the PA directed Simon to the ‘coffee-pot, that one there’, exactly at the point when Simon’s hand reached out for it. None of that will seem very remarkable, until it is contrasted with the routine ways in which support staff can ‘take over’ a task with people with learning disabilities. For instance, in V16, a supporter was deciding for a person with learning disabilities what items needed to be thrown away in her kitchen.

Showing respect

Extract 1 PA: Mary: PA:

People with learning disabilities told us that they liked being ‘the boss’ of their PA. However, there were very few instances in our 20 h of video data where someone with learning disabilities actually asked or told their PA to do something. This is one of the few occasions. Simon: right, would you like to help me with the coffee, mate? (V10) Simon, who had a visual and a physical impairment, had an adapted kitchen, in which he could use equipment and cater for himself – with assistance. One of the interesting things we noticed in this video was that Simon went into the kitchen first, and the PA remained behind Simon at every stage. They moved around the kitchen to make coffee, getting the milk, pouring out the water, washing up the cups; each time it was Simon who moved forward to actually do the task. The PA often moved back, which enabled Simon to get around without bumping into him. At

Mary: PA:

That milk’s not very nice. (laughs) OK, right Like (unclear sound) milk Let’s see it. (leans in, and sniffs milk) Oh, that’s gone off. That’s not very good is it? No Oh dear dear dear dear (V16)

Although Mary agrees with her PA, nevertheless the PA takes a dominant role in initiating this exchange, and in following up with her evaluation ‘oh dear dear’, which sounds quite child-like. An important factor in treating people with respect is to strike an adult-adult tone. Very young children, or babies, are often addressed by adults with what is known as child-directed speech (Gallaway & Richards 1994). This has been shown to have features like sing-song intonation; repetition of words; higher pitch than normally used; and simplified sentences.


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By contrast, here is a person with learning disabilities, Jenny, who is going to the library with her PA. The PA talks to her along the way, asking what she is planning to do in the library, and what she has done before. Extract 2 PA: Jenny: PA: Jenny:

What did you – research? I do the double-double dot rugby (making hand gestures) Oh, you want to look at rugby? Yeah (V18)

Jenny is not a talkative person generally, and one word responses, like ‘yeah’ have previously been typical of her. This PA, however, does not leave it at that. She asks her ‘what did you – did you research?’ The choice of the word ‘research’ carries with it the idea that Jenny is an expert, and may have a serious purpose in her visit to the library. Jenny responds to this in quite an animated way, and uses hand gestures to show her PA how she will use the computer, and explains what website she visited in the library. It would have been easy for the PA to treat this display in a childlike way, and to over-encourage Jenny, or give her condescending praise for her skills in navigating the web. However, she does none of this – she takes Jenny’s request seriously, asking her more about which rugby teams she wants to look up on the web, and she subsequently shows Jenny that she shares the interest in rugby with her. When they are in the library, the PA continually offers opportunities for Jenny to share eye contact, by glancing from the computer screen to Jenny’s face, pausing and waiting for Jenny. It was these fine details of body language that mattered in creating an adultadult conversation. Each PA, and each person with learning disabilities, is different. Part of the skill of talking to someone as an adult is to know that person’s own particular style, and to respond to it. One of the strongest ways to show respect is to give the other person full rights to take equal turns in the conversation. We had many examples of very fluent conversations, that appeared to be like talk between partners in a close relationship, who know each other very well. Good PAs were vigilant, and very keen to follow the lead of the person with learning disabilities, whenever they could, as Brian’s PA did here, when discussing the previous night’s concert:

Extract 3 Brian: PA: Brian: PA: Brian: Brian: Brian:

Er – last night was really good. Went to a (…concert?) Oh yeah. I enjoyed – ‘stormy weather’ (makes hand gesture) ‘Stormy weather’ Although did you find it – well I found it too high. I don’t know about you Our video people hadn’t (…) really Oh did you? Our videos were on the mobile phone


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We also have examples of conversations led by people with high support needs. For instance, the following extract shows Ashley, a young man who does not use words to communicate. Ashley is standing by his living room door, and his PA is beside him, with one arm on his shoulder while he leans round to look at Ashley’s face. Extract 4 Ash: PA: Ash: PA:

Sign for ‘where’? You’re looking for Dave are you? Eeeh I think he’s probably having his tea now mate. (V6)

There is very exact physical timing in the interaction between Ashley and his PA. Although the gestures made by Ashley could, to an outsider, mean anything, this PA interprets the open hand gesture very precisely – as a series of questions about Ashley’s brother Dave. Whether or not this was what Ashley originally intended, he accepts the exchange as relevant, and in fact carries on asking and accepting the responses his PA gives him; Ashley eventually moves away towards the TV, thus concluding the conversation. Given that Ashley has only contributed one, very general, gesture during this sequence, it is the PA’s achievement that he has turned Ashley into a conversational partner who has: • Started up a conversation. • Asked questions of his PA. • (Apparently) introduced a particular topic. • Taken equal turns in the conversation.

Supporting choices An important part of having ‘control’ in life is about autonomy and decision-making. In ‘Valuing People’ and other policy, ‘choices and control’ are often bracketed together. At the survey stage of our study, PAs and direct payments users with learning disabilities had indicated that they most frequently made decisions jointly, by talking about things. Therefore, we were interested to find examples of this kind of talk in our videos. Much of what we captured in the 19 videos represented a kind of routine, everyday life in which it was hard to spot any actual decision-making. At one point, the camera person asked a pair how they would decide which pub to go to. The PA explained that they always went to the same pub, as it had a pool table, and that was what the person with learning disabilities liked. However, good PAs were also very sensitised to the moments when a choice could be made, and would often remind a person with learning disabilities that they could make a choice, that the decision was theirs. In the following extract, Nigel had been talking about going out with Bobby to the pub. However, he realised that he might need support, and started to worry about the availability of a PA:

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Extract 5 Nigel: It’s going to be hard for Jon (the PA) to take everything in, I think. Oh, let Jon sort it out tomorrow PA: Cause, he’s doing – he’s doing the shift for me, isn’t he? But if you wanted to go with Bobby, that’s your choice, yeah? Nigel: I don’t want him getting drunk down there! (V 14)

Although he is reminded that it is his choice about going to the pub, Nigel reveals that he feels the need for a PA to support the pub trip, since he worries about Bobby getting drunk. This is a neat reminder of the element of responsibility involved in choices, and in carrying through those choices. Some people with learning disabilities in our study had developed systems to help themselves make choices. For instance, Brian (V17) showed us a laminated checklist, that he had decided on himself, as a good way of checking on what he needs to buy. In V17, Brian and his PA are seen in his kitchen, with Brian holding his checklist, very much in control of dictating the shopping list. His PA follows Brian’s lead, in looking for items in the cupboard as Brian calls them out. Two other videos have long sequences of choice-making (V11 and V14). In V11, Mary is choosing clothes to wear that day, and V14 is mostly about Nigel and his PA constructing a shopping list that will meet a very strict budget. In both these cases, the role taken on by the PA is to remind the person with learning disabilities about the constraints on their decision. In Nigel’s case, for instance, there is some intricate talk about the relative price of each item, and whether in fact Nigel needs to buy that item today. With Mary, who is choosing clothes, the PA discusses with her whether the items match. Mary is actively seeking advice, just as one might do from a friend. Above all, a good PA uses the right tone in encouraging and giving confidence to the person they are supporting. Choice-making is underpinned by self-confidence, and the following extract gives an example of what this might mean. Matthew is dictating a letter to his parents, and his PA is also helping him to remember and to choose what he wants to write in the letter. At this point, they have just mentioned a lunch club that Matthew goes to: Extract 6 PA: Can I come with you today? (laughs) I haven’t had any dinner. We’ll all come! What did you have today? Matt:Cottage pie PA: mm, shall we put that down? Do you want to write that? Yeah? No? Matt:Er… PA: Don’t have to Matt:You could. I think it’s not interesting what you get

Matthew is a very quiet man, who has lived in institutional care for much of his life. He needed a lot of encouragement to decide on what to put in his letter, and

the PA manages to keep the tone light and humorous. The PA encourages Matthew to have a joke about the lunch club, and to say what he had eaten there today, and they both smile and laugh. She then asks about putting this into his letter, but she is observant as he hesitates with an ‘errr’. She immediately drops her joking tone and her laughter, and agrees that he doesn’t have to write about what he has eaten. Despite having needed a fair amount of support to choose news to write in his letter, he is still given time to think for himself about the final edit, and to say ‘no’ and change his mind.

Giving advice Compared with other disabled people, who may need assistance for physical tasks, direct payments users with learning disabilities have a more generalised need for assistance, in order to manage their whole life. That is arguably what the impairment of ‘learning disability’ actually means. According to DoH (2001) definitions, people with learning disabilities have: • A significantly reduced ability to understand new or complex information, to learn new skills. • A reduced ability to cope independently. • Which started before adulthood, and with a lasting effect on development. People with learning disabilities have an assessed need to receive support precisely because they cannot cope independently with their own lives, and in fact if they did not receive support, they would be in danger or at risk. There are therefore some very sensitive tasks for PAs, in giving advice and ensuring safety, and we were particularly interested to see how these tasks were managed in an ‘empowering’ way. It is easy to think in black-and-white terms about ‘good support’ which is empowering, and ‘bad support’ which is bossy. When we talked with people about these areas of their support, we referred to them as the ‘grey areas’. Budgeting was one of the most frequent ‘grey areas’. Here is Nigel, again, with his PA, who is adding up his projected shopping bill on a calculator: Extract 7 PA: Right you’ve still got a bit of change up to 10 pound Nig: But how much would I have PA: Because we’ve knocked – hang on let me just check, let’s say 9.30 Nig: Ooh you’d rather me keep it wouldn’t you say ‘don’t spend it’ (laughing) … maybe it’s good to give the razors a miss

This activity of budgeting comes over very much as team work, with the PA and Nigel working together. It is the PA’s task to do the actual calculations, and to tell Nigel exactly what the parameters of his decision are. Nigel, for his part, takes on the role of an astute shopper. He later goes to look


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in the bathroom, and discovers he still has enough razors; he also decides later on in this conversation to save up and buy a bumper pack of razors. As in other extracts, there is considerable mutual laughter, with Nigel often leading this. Above all, though, this budgeting advice is given on Nigel’s own terms. This is made clear by a later comment, when he talks directly to the video team, and explains the reason for his budgeting support: ‘I can’t - spend - I can’t spend more than what I’ve got in my pocket. I try to- it’s a frustrating thing for me - I sometimes find everyday life a bit of a struggle but I try to get through everything’. The Skills for Support team felt that advice had to be given when asked for, and had to be on the terms of the person asking for it. However, protection and advice are even more significant in the lives of those with higher support needs. For instance, a PA in V13 was supporting a young woman, Cathy, who has profound and complex needs, and had to help her into a chair by using a hoist. Throughout this task, she maintained a lively and friendly exchange with Cathy, explaining to her and discussing what she was doing. Extract 8 PA: Oh, well done Cathy. Right, going to get your sling on, (…) where you’re going a minute. Sorry- it’s in your face, sorry. Right, come over here a bit. I know it’s not comfortable at the moment Cathy. Right, going to roll you on your back – are you ready?

When the PA says ‘I know it’s not comfortable at the moment Cathy’, she is responding to very slight indications from Cathy’s body position, and perhaps her lack of response, that the sling may be a nuisance to her. The words ‘sorry’ and ‘thank you’ are frequently used, as the PA responds to Cathy’s slightest movements. The basis for this type of good support is that the PA understands and responds to the person with learning disabilities in an individual and person-centred way, looking at things from their point of view. What this takes will depend entirely on the person, but a final example will illustrate some of the complexity and sensitivity that a good PA has to show. Adam was the young man in V6 who did not use words, and he sometimes hits out at people when he is frustrated or does not understand. V7 shows him going along the road to youth club with his PA. Adam uses his signs to ask things, about drinks at the club, and about who will be there. In responding to him, the PA takes pains to prepare Adam fully for what he is doing, and just before going in, he gives him his 50p fee to take in and give to the organiser. All this preparation pays off, because once they are in the club, the PA is enabled to stand back, and to let Adam interact as much as possible with others in the club.


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Summary and discussion With the renewed moves towards personalisation in social care (DoH 2009), the English Department of Health is proposing a transformation of the social care system, and a move towards personal budgets and self-directed support for all service users (DoH 2008). Therefore, in the field of Learning Disability the demand for PAs is like to continue to increase, and so there is an urgent need for support and training to develop. We hope that this training can include and be controlled by people with learning disabilities themselves, and that the training materials from the current project can be used interactively with PAs and people with learning disabilities working together. When reviewing the video extracts in ‘Skills for Support’, many of the participants felt that there was nothing extraordinary about the conversations we had recorded. In fact, they sometimes said it was hard to tell who was the PA and who was the person with learning disabilities – that this support was simply about ordinary relationships. However, it is not always so easy to be ‘ordinary’. It remains true that a PA has a paid role, to deliver support to the disabled person. The relationship is therefore bound to be a professional one, albeit ‘played down’ and made more friendly and equal by both parties. What we have tried to give in this article is an overview of some of the strategies and skills which PAs displayed in achieving an ordinary, friendly relationship within this professional context. Here is a summary of some of the cross-cutting strategies we observed. • Stepping back Simon’s PA in the kitchen and Ashley’s PA at the youth club both physically stepped back, but were seen watching to make sure the person they were supporting was safe, while remaining carefully in the background. Stepping back can also mean not saying something which you could say, but hesitating or allowing the person with learning disabilities to have their own say. Stepping back is the opposite of dominating; it is about redressing the balance of power between the person with learning disabilities and their staff. • Listening and observing Treating the person with learning disabilities as the boss is relatively easy with someone who is already in control, and will ask the PA to do something for him. However, this was rare in our data. PAs often therefore need to remind people to make choices, listening and responding to things that are not part of ‘the plan’. There were also skills involved in talking to someone in an ‘adult’ way, rather than using child-like talk patterns. • Body language is a very general, but extremely important, part of communication. Mutual smiling and laughter were important, and PAs often got down to the level of the person they were talking with. Equally important was the ability to observe and follow the body language of the person being supported. Staying ‘in tune’ was important for

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all, but especially for people like Ashley (Extract 4) or Cathy (Extract 9) as they communicate through their body language rather than spoken words. • Time People with learning disabilities often need to take their time to respond, to think, and to act. We saw several instances where PAs were very good at taking time, and waiting for the person they were supporting. For instance, this was true of Jenny’s PA in the library. The issue of time is related to the issue of ‘whose agenda is it?’. If the plan for the day remains with the PA, then she is likely to be keen to get through it, and to keep up the pressure. However, if the agenda is really in the hands of the person with learning disabilities, then the PA can wait, and allow the person to be responsible for what gets done and what does not. • Team work is a term that might comprise some of the other issues raised in this paper. For instance, when giving advice and guidance on money matters, we saw PAs who had discussed the issue with the person they were supporting. Therefore Nigel was well aware of why he needed a strict budgeting regime, and had helped to plan this out. This meant that he and his PA could work together on implementing his budget. • Personal knowledge Finally, good PAs were able to get to know the person they were supporting. In many cases, the PA and the person with learning disabilities had a close relationship, which included shared experiences and activities. This meant that they could talk about things they both knew about, or had done together, and this often put their interactions on a more equal footing. Doubts about personal assistance are often expressed, and include worries about risks, boundaries, raising expectations, and responsibility. Are we asking PAs to do ‘ordinary communication’, while leaving unspoken the responsibilities and extraordinary tasks which they will have to take on in supporting someone with a learning disability? Our contention throughout this project was that it is possible to be ‘in control’ of one’s life, with the right support. Looking beyond the particular physical tasks which PAs undertook, it is probably true to say that all of the people with learning disabilities needed support simply to ‘pull it all together’. Organising their own life includes: • Not only deciding what to do next, but knowing what has to be done. • Planning ahead, for instance – with food shopping, or with money. • Reacting appropriately to emergencies or unexpected events – e.g. a salesman at the door. The people in this study were all people who had been assessed as needing paid support to manage aspects of their lives, and who would arguably lose confidence and become unsafe if they did not have that support. The PA’s task, then, is to provide that safety net, while treating the person they are supporting as an autonomous adult. Previous research about interactions with staff have tended to focus on residential care

contexts, and have often highlighted the negative and institutional aspects of the talk (Antaki et al. 2007; Finlay et al. 2008). It would be useful now to have more research which can help us understand how to change from institutional to person-centred ways of working. Personalisation, control and choices are enacted in the context of a relationship, and the most interesting and exciting challenge for PAs and for people with learning disabilities is to get that relationship right.

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