Building understanding in support relationships
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Résumé
This chapter discusses some findings from a study about support relationships for adults with intellectual disabilities using personal budgets in Germany and Australia. The study aimed to explore how these relationships were influenced by the way support was organised through personal budgets. The chapter presents five sub-themes of how the pairs built an understanding of each other in support relationships, including building understanding through a relationship history, spending time together, language, learning from misunderstandings, and awareness of policies and roles. The study found that policies and regulations inherent in support settings affected the amount of time both people could spend together, and language used by both parties shaped their understanding of each other and their roles within the relationship. The findings emphasise the importance of both people having a good understanding of the policies specific to the personal budget in order to question processes and procedures and ensure that the rights of the person with intellectual disabilities are realised.
Entrées d’index
Keywords : support relationships, personal budget, support, intellectual disabilities, ruling relations, understanding
Texte intégral
1. Introduction
1This chapter draws on findings from a study about support relationships (Lutz, 2020a), conducted from August 2014 to March 2019 in Germany and Australia. The study explored 1) how adults with intellectual disabilities using a personal budget and their support workers experienced their relationships and 2) how their relational experiences were influenced by the way support was organised through a personal budget.
2A personal budget is a funding model that consists of allocated money for people with disabilities based on an assessment of their needs (Jones et al., 2014). Support funded through a personal budget should empower people with disabilities by enabling choice and control about how to spend the money (e.g. to purchase individual services from different providers) and deliver the support (Beadle-Brown et al., 2007; Mansell, 2006). With reference to this purpose of personal budgets, part of a support worker’s job is to provide support by creating opportunities for the person’s active participation in choices about their support (Lutz & Fisher, 2023). Exercising control through active participation in support should assist the person with intellectual disabilities in taking the role of a budget holder.
3In the study, disability studies literature (e.g. Shakespeare, 2014 ; Shakespeare et al., 2017) helped to build a conceptual framework of support as a paid and professional service that inevitably becomes a social and emotional relationship. I1 combined this perspective with care literature (e.g. Christensen, 2010, 2012; Kelly, 2016) and ethics of care literature (e.g. Kittay, 2001, 2009, 2011) to understand relationships within their social policy contexts. I selected the social policy contexts of personal budgets in Germany and Australia due to their related, but different policies and their potential influence on support relationships (for further details about the conceptual framework and the rationale for the selection of countries, please view Lutz, 2020c). In both countries, the disability service sectors transitioned to new policies about personal budgets, which include the National Participation Law 2016 in Germany and the National Disability Insurance Scheme Act 2013 in Australia. The policies created new contexts of support. This meant that people with intellectual disabilities were expected to actively participate in choices about their support by, for example, managing their budgets for support (Cebulla & Zhu, 2016). This change influenced how personal budgets were administered to practically organise support for people with intellectual disabilities taking part in the study (Lutz, 2020a).
4Previous research from both countries had identified barriers for people with intellectual disabilities in using personal budgets, but had not explored the depth of the experiences of support relationships. It is particularly important to investigate this relationship as support workers are involved in the implementation of personal budgets. The implementation process can affect how people with intellectual disabilities utilise personal budgets in a way that supports them in living a meaningful life (Lutz, 2020a). This study’s aim, therefore, was to address this gap by learning more about the depth of these experiences while using a personal budget for the support.
5I used Institutional Ethnography, a social theory and qualitative methodology for the empirical exploration of the study (e.g. Smith, 2005, 2006). In Institutional ethnographies, people’s everyday experiences are influenced by institutions, also referred to as the “ruling relations”, which are policy processes and people’s practices that organise social settings and subordinate people to the ruling relations (Lutz, 2020b). In the context of this study, a personal budget should support budget holders in managing the ruling relations, for example, by not simply being passive budget recipients and being subject to the ruling relations, but rather by actively shaping policies and taking part in them. It is therefore important to understand what happens within the support relationship as the person with intellectual disabilities and their support worker must negotiate how support is organised and implemented and that the former owns control in this process.
6Institutional ethnographers first analyse the lived experiences of people embodied in their practices and then connect them to the ruling relations (Smith, 2005). This means that the analytical ethnographer generates a new understanding of people’s actualities (e.g. communication, actions, behaviours, views and values) by linking them to the ruling relations.
7The study’s analytical approach aimed to show how these relationships were affected by the policies of personal budgets that are supposed to organise the person’s support in a way that enables choice and control for them. This chapter aims to explore the influence of policies on the lived experiences of support relationships. It focuses on the exploration of the relationship experiences and aims to understand how these experiences shape the ways in which the person with intellectual disabilities exercising control over their support as a budget holder.
8To achieve these aims, the chapter contrasts data from ten people with intellectual disabilities and their support worker/s, five in Germany and five in Australia. They took part in interviews and participant observation during a one-year period of ethnographic fieldwork. Additionally, I conducted interviews with twenty service professionals (ten in each country), who were persons working for a disability service provider and involved in the coordination and/ or management of support organised through personal budgets and analysed disability policy documents about disability support.
9The chapter does not provide a comparative perspective on the data from both countries. It adds nuance to my understanding of how two different national support contexts organised through personal budgets affect how people experienced support relationships.
2. Building understanding in support relationships
10To address the research questions, I analysed the relational experience in light of the policy processes of each of the ten support environments observed. The overall findings included the process of how the pairs built an understanding of each other and the factors within the social policy context affecting this process.
11This part of the chapter presents five sub-themes of how the pairs (the adult with intellectual disabilities/ budget holder and their support worker) built an understanding of each other in support relationships, namely:
Building understanding through a relationship history
Building understanding by spending time together
Building understanding through language
Building understanding by learning from misunderstandings
Building understanding through an awareness of policies and roles
12In each section, I present a sub-theme and draw on at least two relationships to contrast the experience of building an understanding of each other in support relationships. I identify the ruling relations in the ethnographic settings, link lived experience to the ruling relations and reflect on the overall emerging themes. Analytical reflections in relation to the research questions follow after each section.
2.1. Building understanding through a relationship history
13My first key finding was that the relationship history of the pairs affected their mutual understanding. This relationship history included how they found out who the other person they were working with was and the process of getting to know each other. The length of time both people had worked together influenced this process.
14Mutual understanding developed through interaction between the two people and this interaction was influenced by the pair’s relationship history. For instance, in Australia, Michael (support worker) and Felix (budget holder) communicated with each other through physical and mental banter. This banter formed part of a routine in the work both men carried out together. During this banter, Felix physically expressed his liking for Michael (e.g. facing him closely, wrestling with him). Felix did not use much spoken language to converse with Michael. He made contact through non-verbal ways of communicating. Since Michael had worked with Felix for many years, he was familiar with Felix’s expression and confident about its interpretation: “I know it from history. You watch him (Felix) for so long and you kind of know”.
15Michael and Felix had developed a familiarity in communicating with one another, which helped Michael in understanding the emotional states of Felix. This familiarity also helped Felix in understanding how Michael felt.
Years ago, I broke up with my girlfriend. I was really upset and Felix knew. Straight away he was saying her name and looking at me and hugging me more. I had always talked to him about the things I was going through with her. He really knows what’s going on. (Michael)
16Felix and Michael became emotionally close through a shared concern for the other. Maybe it was also the familiarity between them that led Michael to feel that Felix understood him.
17I observed many situations, in which Felix showed affection towards Michael. Felix expressed his care for Michael physically, for example, by giving him a kiss on the cheek or forehead. In Felix’s support environment there were no policies in place, or people involved, that restricted him from expressing these feelings toward Michael in such ways. When Felix could express himself physically, he was more likely to engage in support activities with Michael. This experience seemed influenced by the time the two men spent together. Felix owned two personal budgets that funded his support. These funds paid for Michael’s support. Based on these funds, Michael could dedicate his time only to Felix, which helped them to find out who the other person was.
18A long history of working together also had potential to limit people’s capacity of developing a mutual understanding. In some instances, the length of time people had known each other contributed to their holding fixed views and expectations of one another. These had sometimes manifested themselves and stopped the pairs from questioning their relationship.
19In Germany, I observed this issue in the relationship between Helene (budget holder) and Emma (support worker), which had existed for eleven years. It had been the longest relationship I learned about in the context of this study.
20Emma stayed overnight when she worked with Helene on Mondays and Tuesdays. It seemed that not only Helene, but also Kerstin (Helene’s mother) had a certain trust in Emma due to the long time they had known each other. Tensions within the relationship between Emma and Helene were often palpable and related to a static view that they had of each other. This static view was influenced by the length of time both women had known each other, but also by other factors. For example, I did not get the impression that Helene felt that Emma viewed her as an adult with the capacity to own and manage a budget for her supports. Emma explained that it sometimes felt like working with a child when she was around Helene. She elaborated on this feeling by saying that Helene could not follow the conversations between her and Kerstin, which involved talking about the organisation of her support. In this context, Emma acknowledged her feelings of being torn between Kerstin’s wishes and those of Helene. Kerstin was the person who paid Emma and she saw Kerstin as her employer rather than Helene. She administered and managed Helene’s budget. The fact that Helene did not hold the power over the organisation of her personal budget and that she was not included in conversations about it influenced how Emma saw and behaved toward her. In this context, the self-managed2 aspect of Helene’s budget did not empower her in terms of owning her budget and being in charge of the organisation of her support.
21Helene’s support plan included that “conflict resolution – gradual detachment from mother” was one of her support goals. However, Emma’s support approach was not helpful in “detaching” from Kerstin and gaining power over support. I continually witnessed Emma making decisions for Helene, which had something to do with Kerstin.
Helene asked what I was eating. I said, “Spätzle with mushrooms and meat”. She looked curiously. I asked, “Do you want to try?” She said, “Yes”. Emma said, “That’s not possible. We are having lunch with Kerstin shortly.” (Field notes)
22For Helene, this meant that Emma monitored her food choices. She told me that Emma and Kerstin were making the decisions about what she was doing on the days Emma was working with her. In many situations, Helene got angry and upset when she felt that she was viewed as someone who did not have the capacity to take control of her support. It seemed that over time Emma and Helene had a set view of the other in the relationship, which seemed to influence their view of themselves in the relationship.
Reflections
23The length of time pairs had known each other influenced their understanding of the other person’s role and situation. It constituted a history of shared experience. A history of working together had potential to improve people’s understanding of one another, for example, by becoming sensitive to the moods and feelings of the other. The length of time people had known each other also introduced limitations to developing this understanding, as their view of the other was more likely to become fixed.
24I sometimes had the impression that many budget recipients viewed their worker as an employee, but that the worker sometimes struggled to see the budget recipient as someone with authority and power to employ them, be in control of their support and make autonomous decisions. From this viewpoint, the sharing or shifting of power over the organisation and implementation of support from the worker to the budget holder was difficult to realise.
2.2. Building understanding by spending time together
25Not all relationship pairs had known each other for as long as Felix and Michael or Helene and Emma. For example, Linda (support worker) had worked with Jeff (budget holder) for six months at a day centre in Australia. Jeff and the other day program participants were divided into three groups consisting of five participants. Two support workers supervised each group.
26Although Linda was Jeff’s key worker, she only worked with his group one week each month. Linda’s rotation across groups limited her opportunities to spend time with Jeff. These “rotation policies” seemed to slow the process of getting to know one another.
27I rarely saw Linda taking time to work only with Jeff. He “shared” Linda with his group members and Linda had trouble in attending to Jeff when they left the day centre as a group. This influenced Jeff’s participation in the activities. Throughout my time with them, I rarely witnessed opportunities during which Jeff could explore an activity with Linda.
Jeff grabbed a package of sausages and showed them to Linda. He held them up and wanted to put them inside the shopping basket that Linda carried. She briefly looked at Jeff and said, “Not today Jeff – pumpkin soup”. (Field notes)
28The schedule for the day was set before I arrived at the day centre in the mornings. The decisions about what the group was going to cook had already been made before they had gone into the shopping centre to buy the groceries for the meal. One of Jeff’s goals was “cooking”. It was documented in his person-centred plan3, but he did not have a say in what his group cooked. Additionally, Linda’s workload introduced challenges to the relationship in that it sometimes limited her capacity to attend to Jeff and understand what he was curious about. Contrasting Jeff’s budget with Felix’s budget, it seemed to matter whether the budget was self-managed and used for support in the person’s local environment. Jeff’s budget was not self-managed and it was implemented to pay for support in the day program. Felix’s personal budget was utilised in a way so that Michael spent time only with Felix. Michael did not have to “split himself into ten pieces” as Linda described the feeling of working with several program participants simultaneously.
29The setting inside the day centre created much better opportunities for Jeff and Linda to spend time together, compared to the outside activities. I witnessed a few situations, in which Linda fully attended to Jeff. This happened in the afternoons when the groups returned to the centre. Linda once facilitated a painting activity for Jeff, which he enjoyed.
Jeff walked to the craft room. Linda followed him and used a Makaton sign for painting. He smiled at her. They prepared the painting activity inside the craft room. Jeff sat on a chair and Linda brought him brushes and painting colour. Jeff started to move the brush (that he had dipped into the colour) on the white paper page. Then Linda brought a paper with Jeff’s name on it. She encouraged him to paint over the name, which he did several times. (Field notes)
30In this situation, Jeff experienced Linda’s full, dedicated attention and her interest in how he wanted to engage in the activity. She then accommodated his preferences. This type of interpersonal discovery helped Jeff in building trust in Linda – a trust that he would eventually receive the attention of a person. Painting was not listed as a goal in Jeff’s plan, but it was listed as one of his favourite activities. The painting activity always happened inside the day centre.
31Other factors impacted on the time pairs could spend together. I noticed this in Australia, when I researched with Elsa (budget holder) and Elizabeth (support worker). Both women had worked together for many months, but Elizabeth had only recently become Elsa’s key worker. Although Elsa was available and open to engage with Elizabeth, it seemed that the space, in which Elsa and Elizabeth could have spent time together, was restricted by certain regulations.
32Elizabeth spent most of her time inside the staff room, which Elsa could not access because it was locked. Elsa had to wait for Elizabeth until she was done with the “paper work”, as Elizabeth called it, to get her attention. Elizabeth left the staff room when she knew that it was time to unlock the kitchen facilities so that the women could cook in the evenings.
33Elizabeth completed the “paper work” about Elsa, but not with Elsa. This practice did not consider Elsa’s role as a budget holder in the organisation of her support and limited the “one-on-one time” between her and Elizabeth, during which Elizabeth might have developed a better understanding of what was going on in Elsa’s life. However, this was a regulation inherent in the way support was delivered in this group home and was not a specific procedure that applied to the budget that Elsa received. I never saw the other two women in the group home being involved in documentation about their support either. Even though Elsa owned a personal budget, it did not influence Elizabeth’s practice in planning and documenting Elsa’s support inside the group home. However, neither Elizabeth nor Molly (team leader, supervisor of Elizabeth) knew how Elsa’s budget was used. Instead, it was a staff member at Elsa’s day program, who told me that the group home and the day centre shared Elsa’s budget.
34When I asked Elsa if she had a budget to pay for her supports, she said that she did not know, but knew that it came “from the government” and associated its name with activities she did outside the group home. While I was around both women, they were often unclear about what activities they were meant to be doing together. What was clear to Elsa though was that she was supposed to talk to Elizabeth for fifteen minutes each week about her person-centred goals, which was a policy practice specific to the group home she was living in.
Reflections
35Creating a history of shared experience required both people to spend time together. This time was often limited due to the support worker’s other jobs, such as administrative work and attending to other clients while they were meant to support the budget holder. These time constraints were imposed by the policies inherent to each support setting, but not explicitly from the policies of the personal budgets.
36When there was time for both people to focus on each other and engage with each other, the support worker was more likely to get to know the person, including their preferences and dislikes. It was important that the worker found out who the budget holder was, so that support could be adjusted and organised in a way that matched the person’s interests. Getting to know the worker and finding out more about them was also important from the budget holder’s standpoint in building an understanding of their relationship. However, as a support receiver they were not expected to understand the worker’s interests to facilitate activities. This was a policy expectation that only applied to the worker.
37Each relationship operated within different, environmental conditions. The support policies produced certain conditions that impacted on each relationship. However, there were differences in how personal budgets were used to organise the support that influenced these conditions (i.e. if it was self-managed and used within the person’s home environment or whether it was used within a group setting, such as a day program). These arrangements affected how much time both people could spend together.
2.3. Building understanding through language
38The language both people used in reference to another revealed something about how they understood each other and the way they understood the other person said something about how they saw their role within the relationship.
39Elizabeth referred to Elsa and her housemates as “girls” instead of “women”. Elsa, in contrast, referred to herself as “client” and to Elizabeth as “carer”. The language was shaping the image that Elsa and Elizabeth had of themselves and the relational other. When I asked Elsa why she was using the expressions “client” and “carer”, she responded, “I don’t know”. I also asked her what the word “carer” meant and why she did not use the term “support worker”. Elsa explained to me that the term “carer” sounded “more professional”, which seemed that she might have felt that she needed to be professional in her own home. Elsa clearly said that Elizabeth was not her friend and when I asked if her two house mates were her friends, she confirmed. This distinction was important to Molly who supervised Elizabeth. She explained its importance in the context of service delivery.
We use the term “customer”. I prefer “client”, but whatever term you use, the customers do need to realise that we are providing a service, and we do need to keep it professional. And if those boundaries are being taken away, then it can go both ways, either the support workers aren’t doing their job properly, or the customers are not keeping up the end of their bargain. (Molly)
40Molly considered the contract between Elsa and the group home service when she touched on the use of language in the group home. In this context, she shifted attention to both sides of the work arrangement, the customer, and the service. Molly was often around when Elizabeth worked in the group home and monitored Elizabeth’s relationship with Elsa. Perhaps Molly’s preferences around the use of language and her views of how customer and support worker should engage with each other had influenced Elizabeth’s and Elsa’s rhetoric too. On several occasions, I heard Molly referring to Elsa and her house mates as “clients” in their presence and to the support workers as “staff”.
41The dichotomy between “staff” and “client” was part of a larger policy discourse specific to this group home that influenced how Elsa and Elizabeth were supposed to see and refer to each other and to work together. It sometimes seemed that Molly’s language was adopted by Elsa and Elizabeth. This language stressed the importance that “staff” and “client” maintained professional boundaries and did not become too friendly with each other. This importance influenced how Elsa and Elizabeth made sense of their roles within their relationship. Linking this to the policies of Elsa’s budget, it becomes clearer that the specific policy discourse of the group home had been integrated in people’s language and practices, which affected how both women identified with their roles.
42When I researched with William (support worker) and Lachlan (budget holder) in Australia, I also learned about their views of each other through their language. When I asked Lachlan about William, he responded “nice man” on a few occasions. One time, William was present when Lachlan gave this response. It was unclear whether he said this due to William’s presence or whether he associated “nice man” with William. When I asked Lachlan about William, he usually gave a response related to an activity, during which he required support, such as gardening or fishing. He named the activity, but it was hard for me to see the emotion associated with this activity. William referred to his relationship with Lachlan as “mateship” and often used the Australian term “mate” in his chats with Lachlan, which I never heard Lachlan do. For example, when William reminded Lachlan of something, he used a leading question or prompt and said “Do you quickly want to jump under the shower, mate?”. It seemed as if William thought that posing and phrasing it this way did not sound too forceful. However, William needed to “get things going”, as the initiative did not always come from Lachlan. This was linked to the ways in which Lachlan’s support was organised through his budget. His self-managed funds were intended to complete scheduled activities and achieve set goals. They did not consider much time for William and Lachlan to stay in the moment and wait until Lachlan had decided what he wanted to do.
43Not only did both people share different views of their roles, which they expressed through language; they also had different views of their relationship. They defined this in different ways. When I asked Jack, a budget holder in Australia, and his support worker Samantha in the joint interview about their relationship, Samantha answered first and used the following descriptions to define their relationship: “professional relationship with a bit of fun throwing in”. She explained that she is “not friends (with Jack) by any stretch of that” because she works with him and made a distinction between friendship and professional relationship.
44Jack agreed with Samantha’s statement and said that they have a “different type of relationship”, but that they have a similar sense of humour, which makes the relationship work. Samantha dominated this talk and she was clear that she was not friends with Jack. Her voice was strong and firm when she said this, but she did not ask Jack if he saw this differently. His options were to agree or disagree with Samantha’s statements. She held the power about defining and explaining what their relationship was. I could see this also happening when they cooked together. Samantha was “in charge” of the activity.
Jack chopped up the parsley. Samantha said, “You gotta step it out mate, I could be dead by the time you finish this”. Jack got the pull chopper out to speed up the chopping. (Field notes)
45Samantha’s style of facilitating the cooking activity and the knowledge she had about how to cook put Jack in a subordinate position within their relationship. However, this was also influenced by the fact that Jack’s budget only funded three hours of support for the cooking activity each week. Samantha sometimes seemed pressured in helping Jack to cook the meals within the given time, but it also seemed that she viewed Jack as someone who was much more dependent on her than the other way around. I sometimes saw this imbalance reflected in their verbal exchanges, in which dependence on and power over the other were communicated. For example, Jack’s subordinate position was demarcated by his sarcastic comments in conversations with Samantha and by referring to her as “mum” and “teacher”. This might have been his way of rebelling against the unequal distribution of power. The way power was shared or distributed in the support relationship showed itself in the ways Samantha and Jack viewed and spoke to each other. And this was linked to what both people were expected to achieve within the hours of support that Jack’s budget covered.
Reflections
46Each support relationship was embedded in a broader context of support that influenced the linguistic discourse of support, which was specific to the environment in which the relationship developed. This suggested how both people were supposed to use language within the support environment and refer to each other. The ways, in which both people used language revealed something about how they saw and understood each other. It shaped their view of the other, themselves and the support relationship.
47Their language also said something about their position within the relationship and how power between them was distributed. The way language had entrenched itself in a setting was influenced by the policies and procedures specific to the support environment and the people who took part in it. This dynamic was part of the ruling relations.
48The ruling relations seemed to consist of policy processes specific to the type of budget that belonged to the person; policy processes specific to the environment in which the relationship operated; and the power, views and expectations people held in their relationships.
49The unequal distribution of power showed itself in the use of language, but also in the little involvement of budget holders in organising their support. This contradicted the purpose of the policies specific to personal budgets, as they were supposed to shift power over support to the service user (Slasberg & Beresford, 2015). This was usually in the hands of family members and support staff. The budget holders were usually not the ones who were “holding” the budget. This was reflected in the ways people viewed and spoke to each other and prevented the relationship from becoming something different.
2.4. Building understanding by learning from misunderstandings
50The process of building a mutual understanding was also influenced by
both people’s learning from misunderstandings. For example, when I re-
searched with Yelena (budget holder) and Maria (support worker) in Germany, I learned about potential of their misunderstandings for the relationship.
Yelena was eating fast. Maria asked her, “Are you rushing because you want to go for a walk?”. Yelena smiled. Maria said, “Yelena did not want to eat one day when I was with her, but was terribly hungry by the time we got back from the walk. I then realised that she did not eat because she was concerned that there was less time for a stroll”. (Field notes)
51Through this misunderstanding, Maria was able to learn more about Yelena’s interests. She learned that Yelena enjoyed spending time outside more than inside. The initial challenge of not knowing what Yelena wanted was important in finding out more about Yelena. Both women had to occasionally deal with frustrated and helpless feelings, but these “struggles” provided an avenue for further exploration and negotiations, for example, by resolving them. Working through misunderstandings was part of getting to know one another. It was part of creating a history of their relationship, which helped each of them understand the other person’s situation. This involved Maria’s understanding of Yelena’s intentions and desires and Yelena’s understanding of Maria’s efforts in finding out what these were.
52Linking the women’s experiences to Yelena’s budget that paid for the support through Maria, it became clearer that both women had the capacity to work through a misunderstanding. Yelena used to live in a group home before she owned a budget. The personal budget enabled her to pay for her own worker, but also confronted her with more questions about how she wanted to spend her time. Maria got paid to find out what Yelena wanted to do. In practice, this meant that Yelena’s budget provided a basis for taking the time to work this out. However, this proved to be challenging in that the budget holder was expected to voice their priorities by working through misunderstandings with their worker.
53The living and funding situation of the budget holder influenced whether people were open to recognising, acknowledging, or solving a misunderstanding. For example, the ways in which Thomas’ (budget holder) support was organised never allowed Thomas and Luke (support worker), a pair I met in Germany, to spend time together alone. Like Linda’s situation in the Australian data set, Luke could not solely focus on Thomas. This influenced his responsiveness to what Thomas was trying to communicate and led to misunderstandings in some instances.
Thomas approached Luke and said, “Rubbish downstairs”. Luke walked around and checked on Thomas’ flatmates. Thomas approached Luke again and said, “Rubbish downstairs”.
Luke looked at him and said, “Oh Thomas, no need to put the rubbish downstairs”. (Field notes)
54Other people who required Luke’s support surrounded Thomas. However, Thomas was the only person living in the flat who did not use much spoken language. He did not often say words, but when he said them, people around him seldom responded in ways that allowed them to find out more about what he was trying to say. I witnessed many situations, in which Luke had missed opportunities to take the expressed need of Thomas further, for example, by asking more questions about a word Thomas had said. Understanding what was going on for the other person also included the worker’s openness and willingness to find out what was upsetting the budget holder.
55Thomas’ support plan listed the goals attached to his budget. It indicated that “sustaining the communication options within his environment” was one of his goals, but I experienced his communication options as very limited. It seemed vague how “sustaining communication options” was interpreted by Luke and Thomas’ flatmates.
56Contrasting this situation with the ones between Maria and Yelena, it became clearer that Luke’s capacity in understanding Thomas’ underlying interests was sometimes compromised by the living and support arrangements organised through Thomas’ budget. The money from his personal budget was used to accommodate Thomas in the flat and provided him with a worker who always worked with his flat mates at the same time. This support practice and policy regulation were part of the ruling relations operating within this support environment and it reduced the opportunities in which Thomas and Luke could resolve misunderstandings, which might have helped both men in creating a richer understanding of their relationship.
Reflections
57People’s ways of communicating encompassed their capacity to resolve misunderstandings and communication issues.
58When both people dedicated their attention to the other and let go of distractions (e.g. other people’s expectations) around them, they could occasionally share some form of intimacy, which sometimes helped them to develop a newer understanding of one another. This experience was often influenced by the worker’s limited time. The budget holder was then expected to adjust to the worker’s priorities, but not vice versa. It was sometimes unclear if this time was contracted due to the worker’s personal interests or the policies specific to the environment. Time was contracted, for example, when the worker had to work with several people with disabilities while they were expected to perform activities with the budget holder. This led me to question whether there were enough funds in the budget. It also raised the question whether the personal budget was only a funding pathway of support rather than a way of implementing support, so that the budget holder could be empowered to take control over the organisation of their activities.
2.5. Building understanding through an awareness of policies and roles
59I noticed that most budget holders and their workers had limited awareness about how their support was organised. Sometimes, my inquiry made them want to know more about the policies revolving around support. This was often the first step in finding out about the level of knowledge they had of the support they were delivering or receiving.
60While I researched with Lisa (budget holder) in Germany, I witnessed how knowledgeable she was about the policies associated with her budget. Lisa said that her parents let her view the financial reports from the local authority. She was the only research participant who knew the sum of her budget and the hourly rates of her workers, but she did not receive a self-managed budget. Bettina (Lisa’s mother) told me that she once took Lisa with her to the guardianship authority to extend her and her husband’s guardianship for Lisa. She took Lisa with her and Lisa said to staff there that “one guardian is enough”.
61Lisa had confidence in opposing the views of others involved in her support and expressing what she wanted when she worked with Lydia (support worker). However, this was also influenced by Lydia’s support approach. Lydia’s comments to Lisa seemed more like “suggestions”. It looked as if Lydia and Lisa were doing the activities jointly and that they followed Lisa’s wants. Lydia held back and let Lisa make decisions.
I reached up to the top shelf to get the salmon. I looked at Lisa. Lydia stood next to her. I asked, “One or two packages?” Lisa said, “Two packages”. Then Lydia asked, “Do you have enough money?” I looked at the price tag and said how much a package was. Lisa checked the items and her money. She confirmed and said to Lydia that she had enough money. Lydia said “okay”. Lisa asked me to get a second package from the shelf. (Field notes)
62Lisa’s knowledge about her support system empowered her in that she was able to direct Lydia and ensure her entitlements were realised. Lydia’s reaction was to adjust and follow Lisa’s directions. In this relationship, Lisa was in charge of her support. She gained control through her awareness and understanding of the procedures revolving around the support. Understanding each other’s roles helped both people to negotiate. Lisa and Lydia could work through this activity because they were both clear about what their roles in relation to the other were. If the support worker, however, had a better understanding of the support procedures than the budget holder did, then it was important that they shared this knowledge and integrated that into their support approach. For example, Laura (support worker) took a reserved approach, held back and let Andrea (budget holder) take some control.
Laura reminded Andrea of the activities they had planned by asking her, “What were the four things we wanted to do today?” Andrea thought about it for a few seconds and said, “Buying clothing and going to the chemist”. She tried remembering the other two things they had planned to do. Laura then added, “And we will get your phone card on the way back and now you can pick something to eat”. (Field notes)
63Laura often made suggestions to Andrea, who seemed to understand these as gentle reminders about what she needed to think of next, rather than instructions. Laura was willing to give power to Andrea so that she could decide how she wanted to do her activities. It seemed that Laura’s understanding of support work and her professional role influenced how Andrea could exercise choice and make decisions concerning her activities. Laura had an awareness of the goals that were specifically associated with Andrea’s budget. Laura often repeated that Andrea’s overarching goal was to become more independent. Her support approach toward Andrea showed that she was trying to help her in achieving that goal.
Reflections
64Building understanding was influenced by the pairs’ level of awareness and understanding of the policies of personal budgets. The worker’s awareness influenced their approach in supporting the person and letting them take some control over the activities. The budget holder’s awareness influenced whether they took the role of the budget holder and had confidence to take control over their support.
65Most budget holders were not aware of how their support was organised, let alone how it worked in conjunction with the budget. However, one person (Lisa) had a substantial amount of awareness about the organisation of her support through the budget. This awareness enabled them to exercise power over their support arrangements, including their worker. This led me to question the purpose of the policies of personal budgets, as they were supposed to shift more power to service users, let them be in control of the decisions affecting their support work and allow them to be “assisted” by their support workers rather than led.
3. Concluding reflections
66The findings presented in this chapter showed how people in support relationships developed an understanding of each other as part of their relationship experience and that their experiences were influenced by the ruling relations. The analysis found that the ruling relations consisted of three constituents,1) the policies specific to their personal bugdets, 2) the policies specific to their support environment and 3) the personal expectations and views of the people in each environment. The workings of these policies and the people involved in them formed the ruling relations.
67The policies of personal budgets organising support was only one constituent of the ruling relations. The policies specific to the support environments had a stronger influence on how budget holders and their support workers built understanding in their relationships than the policies specific to the person’s budget. However, the reason why the policies specific to the environment were much stronger was influenced by both people’s awareness and interpretation of them. If both people had a good understanding of the policies specific to the budget, then they were able to question processes and procedures that determined how they were doing activities and working on goals. This process was especially important to budget holders as they were supposed to hold the budget and make sure that their rights and entitlements were realised based on this budget. If they had limited or no awareness of the policies specific to their budgets, then it was more likely, that the support and its relationship remained unquestioned.
Bibliographie
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Notes de bas de page
1 With a few exceptions, I use the first person in this chapter to signal my presence as an institutional ethnographer and to indicate that I was “subject” to the research process (Lutz, 2020a).
2 A personal budget can be administered as a direct payment. In the direct payment model, budget holders are meant to self-manage their personal budgets, recruit and employ their support workers directly, administer their salaries and organise their own support work activities (Lutz, 2020a).
3 Support delivery, including support activities and goals, can be documented in a person-centred plan. This plan intends to organise support in a way that places people with disabilities at the centre of decision-making and recognising them as active agents (Beadle-Brown et al., 2012; Broady, 2014). Person-centred support captured in a person-centred plan can be funded through personal budgets (Jones et al., 2014).
Auteur
-
Deborah Lutz
Post-doctoral research fellow, Goethe-University Frankfurt (Germany)
Professor of Inclusive Education, Catholic University of Applied Sciences Freiburg (Germany)
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