Interaction and communication are at the heart of the relationship between personal assistant (PA) and employer
Supporters must balance the supporting, guiding and empowering aspects of their role, which can be difficult
PAs must judge when to use opportunities for learning for their employer and do this respectfully
A relationship takes two to make it work properly; successful support is in the hands of both the PA and the employer with learning disabilities
“Choice and control” have been highlighted as important in learning disability services where people’s lives have traditionally been dominated by protection (Stainton and Boyce, 2004).
Choice, control and independence in ordinary aspects of life such as deciding which way to walk home, what to have for dinner and when to go to bed were the focus of our study.
It is precisely these kinds of decisions that give people a feeling of control over their lives. For some people with learning disabilities, daily choices and decisions can become shared and must be navigated through everyday conversations with help and support from a personal assistant (PA).
This study explored how people communicate to gain an understanding of whether and how choice and control play out in real life.
PAs have to wear many hats as well as supporter (friend, employee, teacher and adviser), which can make balancing the competing roles difficult.
Although the person with learning disabilities may decide something (with or without the PA’s support), it can be up to the supporter to help make it happen. We found that this could involve anything from helping their employer to buy groceries to cooking with them or returning unwanted goods to a shop.
The PA also must balance these choices with other considerations such as: are the groceries within the person’s budget range? Will there be time to make the meal the person wants to make? Will the shop accept the returned goods? How should these be packaged up for return? This could pose dilemmas for PAs who may be unsure of how or whether to bring these things up with their employer.
In interviews, participants often discussed the extent to which the PA role included teaching or instructing the employer to manage everyday activities. We frequently heard PAs asking a question they already knew the answer to. This could risk undermining the employer and casting them as perpetual learners. Nonetheless, these are potential learning experiences, which can be important in building the employer’s competence.
Navigating these situations, moment by moment, can be tricky; the PA has to balance respecting their employer’s choices and decisions with weaving in opportunities to help them learn about things they may not yet be fully able to do. Supporters have to both judge when to use opportunities for learning and do this respectfully.
PAs can find themselves in situations where it is difficult to satisfy all demands of the job. For example, an employer may ask their PA to use their time on a functional task, such as dismantling a chair. However, if time constraints are combined with a difficult task, a PA can find themselves in an awkward position, unable to interact in conversations not related to the task.
Equally, other pressures inherent to the role (such as getting activities done by a certain time and completing tasks before a shift ends) can infringe on interactions in the moment. This can have the unintended consequence of the employer not being attended to or feeling ignored despite the PA’s best efforts.
The supporters in our project were all highly skilled, and the employers were active in seeking out opportunities to talk about decisions. This meant we were able to learn from good practice. For instance, a PA in a pottery workshop was asking a person with learning disabilities to choose what she would like to make on the pottery wheel, and helped by limiting the choice to something ‘round’. When several options had been rejected, she did not force the issue but recognised that the choice could be made later, and said: ‘OK, we’ll go and look at the shapes and see if inspiration strikes you.’
We were interested in when the person with learning disabilities sought out opportunities to reflect on their past decisions or plan the future. Sometimes PAs did drop everything to listen and support their employer.
Playing with words: people with learning disabilities and their personal assistants
Aims: This was part of a research programme led by Professor Val Williams at the University of Bristol, which seeks to identify and shift disabling practices and recognise and learn from those that support people with disabilities. The study looked at how people with learning disabilities and their personal assistants interacted, and worked with co-researchers with learning disabilities to produce training materials.
Methods Interactions between nine people with learning disabilities and eight personal assistants (PAs) or supporters in everyday situations were videotaped.
A method called ‘conversation analysis’ was used to look closely at these interactions. The authors also recorded initial interviews and discussed these with participants to help see what could be changed
Read the report Dowling S, Williams V, Webb J, Gall M (2018) Playing with Words: People with Learning Disabilities and their Personal Assistants. www.bristol.ac.uk/sps/gettingthingschanged/about-the-project/playing/
Interaction and communication are at the heart of the PA-employer relationship. Being a PA means balancing competing objectives, and supporting choice but also finding moments to guide or suggest. This has the potential to undermine the employer but can be done through ways that respect choice while keeping opportunities to learn in the frame.
Experts: Misfits actors Dan Bryan, Michael Johnstone, Greg Tibbets and Paul Prangley
The pressures of the role can mean everyday interaction is difficult when fulfilling a wider objective or task, potentially limiting opportunities for talk that the employer initiates.
We wanted to draw on the insights of people with learning disabilities themselves and were fortunate in working with the Misfits (https://misfitstheatre.com), a theatre group run by people with learning disabilities, who looked at our data and drew on their expertise by experience.
They have produced a fantastic communication training film based on the research that uses their ideas, acting expertise and experience.
The Misfits say successful support is not just in the hands of the PA; people with learning disabilities themselves can take responsibility to ensure the relationship is a good match.
A Good Match, a film with the Misfits theatre company, can be watched at: http://tinyurl.com/y68rnqx7
Stainton T, Boyce S (2004) ‘I have got my life back’: users’ experience of direct payments. Disability & Society; 19: 443-454
Dr Joseph Webb is research associate in qualitative out-of-hours primary care, Centre for Academic Primary Care, University of Bristol
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