Settings where people with intellectual disabilities receive support might be understood as unusual and remarkable communities rather than more straightforward organisations (Bronfenbrenner, 1979). There are numerous, often intertwined, relationships involving people with disabilities, families, support staff, managers, local communities, professionals, commissioners, regulators, policy makers and so on. The nature of disability in the context of well documented prejudice, economic hardship and historical injustice means that all of these relationships are fraught with issues of power and inequality. Abuse and exploitation depend on unequal power relationships to survive (Foucault, 1982).
To address the apparently simple need to establish cultures and environments that are both safe and full of opportunity seems not to be so simple after all. Indeed, some have referred to this issue as a wicked problem – one in which the proposed solutions serve only to worsen the problem (Marsland et al, 2015). Examples of these have been documented elsewhere and might include increased scrutiny, regulation and paperwork. These are factors which can then bring about a culture of fear or at the very least distrust. This can increase levels of occupational stress which in turn increases the propensity of staff to be more controlling in their interactions and so increases the risk of harm. Whilst it seems important to continue to grapple with more traditional approaches to organisational change and leadership, a challenge such as this might also benefit from a more creative approach. This report describes just such an approach where a series of community music sessions were used to establish a culture in which relationships are more open, relaxed, positive, equal and therefore safer. The use of music to achieve this has been well documented in different settings. In the support of people with intellectual disabilities it seems particularly relevant as music affords the opportunity to communicate without words and to engage with other people on an equal footing rather than be immediately disempowered by aspects of a disability and access to important information (https://voices.no/index.php/voices/article/view/845).
Whilst it was originally intended that the approach be formally evaluated using different measures before and after the community music therapy sessions, this was not possible for operational reasons in the organisation at the time. However, it is possible to describe the process and report on the impressions of those involved about the impact of the community music therapy sessions on the life of the community. This will act as a form of pilot study which will enable the development of questions and approaches to measurement that can form the basis of a formal research based evaluation in the future. This pilot evaluation takes the classic form of input, process and outcome (Donabedian, 2002).
Evaluation - Input
The setting was a supported living service comprising individual flats with communal areas for 7 people. Support is provided by staff who work for a wider organisation known as “Choice Support”. Choice Support describes itself as an innovative national social care charity providing support to people with learning disabilities It currently employs about 1700 full and part time Choice Support staff who provide services to around 900 people across most of England.
A series of 22 community music therapy sessions were part of the “What Good Looks Like” project provided by an external group of music therapists who were employed and supported by the London Borough of Sutton. The aim was to create space in which ideas could be felt, expressed and thought about as words, actions or sounds.
The community music therapy sessions were open to all the people present on the day of the workshop regardless of whether they lived or worked in the service. Attendance at each workshop was as follows:
it was important to note that attendance was for anyone who was present and who therefore represented the community at that point in time. It was entirely optional for everyone.
The community music therapy sessions have two central elements. The first is a model known as “Sounds of Safety” (http://safegenerations.org/signs-of-safety/what-is-signs-of-safety/). The model has three pictures of Houses, the House of Good things, the House of Worries and the House of Dreams. Participants are asked to think, speak, sing, dance or act their responses to the good; to the worries; and to the dreams of their house, as a community. Those who can are asked to put the ideas down on paper by drawing pictures or most often by writing down the ideas of the group.
The second model is called “What Good Looks Like” which is a development of the Early Indicators of Concern (Marsland et al, 2007). What Good Looks Like is a unique strengths-based analysis of six areas.
1. Service Users Wellbeing - What is our home for?
2. Staff Skills - What makes me feel good in this home? (Question to residents)
3. Service Planning - What is good about working in this home? (Question to staff)
4. Management and Leadership - What's good about our managers?
5. Quality of Care and the Environment - What's good about how we are looked after?
6. External Agencies Involvement - Who comes to help us? Who do we go to see to help us?
These six areas, as questions, are placed on a simple picture of a house as six rooms. Each of the six areas are used as stimulus for discussion and expression. The Sounds of Safety approach encourages appreciation and valuing of what is positive in the organisation, clarity about any problems and the collective building of a vision for a positive future.
Informal focus groups gave some profound insight into the shared hopes and fears of the people who attended. The members of support staff who attended also provided informal feedback, essentially describing the community music therapy sessions as positive experiences for the whole community and something that they “looked forward to”. The words used had some expected qualities such as enjoyment, happiness and fun alongside words with a richness to them such as lovely and smiling.
Examples of dreams and the good things about a place to live included things that might be expected about friends, independence and control. Other things mentioned are not perhaps acknowledged sufficiently in the way we offer and evaluate support for people. People appreciated love, belonging and beauty – the garden was particularly special for some people. Likewise, when thinking about worries, there were the things we can all identify with. There were worries about the future, possible changes and the day to day stresses from transport to paperwork. But there were also the more profound worries about loss: loss of health; loss of happiness and losing the people we love.
In general, these reports suggest a community of people that can understand and accept its history, feels at home with the present and is able to look forward to a positive future. This is also a community of people who are conscious of both the superficial and the profound. It seems possible that the inclusiveness of the approach and the use of music as well as words might enable people to express these more profound hopes and fears.
This is an informal evaluation pilot that describes the reactions of individuals who live in a service and who work in a service for people with intellectual disabilities. They are responding to an inclusive workshop based approach using music to enable communication about the service where people live and work. The aim is to encourage open and honest communication which in turn will facilitate a culture which is safer for everyone.
It must be stressed that everyone involved in this evaluation was keen to see it as a positive and worthwhile experience that may have something to contribute to wider discussions about keeping people safe in services that are intended to support them. This report represents a summarising of those ideas set in the context of current and recent research but it is not an independent evaluation.
The results came in the form of feedback on the process and some focus groups about hopes and fears for the service as a whole. Because of the approach that was taken, it has been possible to understand the service as a single community rather than a service that is either received or provided by separate group of people defined. This way of understanding systems of supports may be a helpful model for the future.
The results of the focus groups suggest that recent work on the understanding of well-being might be of assistance to the development of services and supports for people with disabilities. Five areas of psychological well-being are supported by some robust evidence that is beginning guide practitioners in various sectors (Kinderman, 2014). These are as follows:
* Be Active
* Be Connected – to other people
* Keep Learning * Giving (especially time)
* Take Notice (be spiritual/mindful)
Interestingly this might be a community that is not “helpless”, “hopeless” or “depressed”. Rather, the process seemed to tap into a community that is positive about itself, the world and the future. This is a community of people who might be said to have survived the experience of being disabled or working as support staff and who continue to be able to engage with services to express hopes and fears (Gondolph and Fisher, 1988). This might also be understood as a form of reasonable hopefulness (Weingarten, 2010) where we can express confidence that this is a community with the drive and the resources to find solutions to some of the difficulties it faces.
Given the importance of developing and maintaining sustainable supports for people with intellectual disabilities that are both safe and full of opportunity, the initial findings of this pilot would suggest that further work on the role of music in opening relationships and equalising power is worthy of further attention. It might be hoped that a form of participative evaluation would bring to light the possibilities of using music to enhance communication (including the need to challenge each other), reduce general stress anxiety, and help everyone enjoy life without fear of harm or rejection.
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Tags in this document: Safeguarding