Support is a key feature in the lives of most people with learning disabilities and this research calls into question the relationships between people with learning disabilities and those people who are paid to support them.
In particular, this paper is interested in how paid carers promote autonomy in the residential setting of a care or group home and how the support provided is experienced by those whom they support.
The paper notes that support and control are difficult to negotiate for those with learning disabilities and those direct support staff that provide residential care. It is recognised that some people with learning disabilities require support in order to live a life in which they feel independent, while others cannot live independently because of the confines of their support. It is therefore the purpose of the research discussed in this paper to identify the challenges experienced by individuals as they attempt to lead autonomous lives within support agency settings.
The research was carried out by interviewing ten adults with learning disabilities and 10 support workers, each recruited through local support agencies, community organisations or professionals in the field of learning disabilities. People with learning disabilities and support workers were recruited separately to avoid those with disabilities fearing backlash from anything they may reveal during the interview process and to promote their voice within an open forum.
This suggests an assumption from the research team that institutional power imbalances are already in place. It was also important to the research team that the voices of people with learning disabilities were not overshadowed or influenced by support worker presence.
Overall, 26 one on one interviews were carried out combining ten initial interviews with three member checking interviews with each participant group. Open ended questions were then used to discover more about perceptions of care and autonomy within the support relationship. These interviews lasted, on average, 58 minutes and included learning disabled participants who were able to fully communicate, using verbal or augmented communication.
Interviews were recorded and fully transcribed, giving each participant an alternative name to protect identities. These transcriptions were then coded for broad themes and organised to best represent the aims of the research.
Emerging themes from the interview transcriptions revealed many challenges for autonomy in the relationship between people with ID and their support workers.
Challenges exist with regards to the structure of support systems, which impact not only on how people with learning disabilities feel about their ability to make decisions about their lives, but also how freely support workers are able to encourage this decision-making. Petner-Arrey and Copeland (2014) suggest that supports workers ‘walk a fine line’ between the agency they work for ,where protection is a top priority, and the person with learning disabilities that they work with, who may have individual aspirations which challenge this.
Institutional control within care homes and group homes can result in over-regimented practices, which stop people with learning disabilities feeling ‘at home’.
Many people with learning disabilities feel that their support is inflexible and that care can be either overly intrusive or under supportive. Some people even feel that the process of making individualised, person-centred support plans impacts on feeling of control, since they are forced to outline steps for ‘moving forward’, when they may be perfectly happy with the status quo. Those interviews therefore felt that outcomes were prioritised over satisfaction.
Respect is a key component of the care relationship which demands that the carer is attentive to the person with learning disabilities whom they support. Many support workers also felt that they should always be ready to be advocates for those being cared for, even if that means standing up for them against the support agency.
If the carer is emotionally invested in the people who they are caring for, this impacts on how well autonomy is promoted within the care relationship.
Overall the study found that support service agency policy is perceived, by both those with learning disabilities and their support workers, to take priority over the autonomy of those being supported. As a result both support workers and those with learning disabilities feel unable to overcome challenges of autonomy promotion due to support service agency structures and regulations.
Strengths and Limitations
The paper successfully avoids polarising disabled people and their support workers and instead, recognises shared tensions which need to be brought to the forefront. While we often hear from either carers or those with learning disabilities, this paper usefully identifies areas where their feelings and opinions cross over, so highlighting the ways in which support services could change in order better to reflect the individuality of the learning disability community which they serve.
The paper identifies small sample size as a limitation of the work, however this could be contested. Arguably, no matter how many people share the ‘learning disability label’, the story of the individual should still be prioritised within the research process. By giving less weight to generalizable experiences of learning disability life, research could perhaps take a bigger step towards being co-productive, in turn, promoting the individuality of the everyday experiences of those with learning disabilities. This may then have a bigger impact on policies which are made for and about those with learning disabilities.
Although interviews worked well to uncover feelings of autonomy, there are perhaps other methods of researching which would have included those with more complicated learning disabilities. While in most interview situations the open ended question allows the researcher to ask pertinent questions, Booth and Booth (1994) argue that people with learning disabilities can find these difficult to answer verbally. Therefore, the researchers could have been more open with their methods in order to include different levels of learning disability within their research, allowing more voices to be heard.
Missing from this work is an analysis of the policy landscape which surrounds and is, presumably, reflected within the structures of support agencies. Moreover, it would have been key to understand how those interviewed perceived the role of policy in both creating opportunities for autonomous thinking and allowing support workers the freedom to tailor their support to the aspirations of the individual.
The findings within the paper indicate a number of ways in which caring relationships impact on feelings of independence experienced by those with learning disabilities who live in group or care homes. The paper argues that labelling people with learning disabilities as ‘at risk’, compromises autonomy and places carers in a challenging, in-between position, where they find themselves representing both care institutions and those they support, simultaneously. Between those being supported and their carers, there is an attempt by some to create an environment which balances risk-taking and protection, however this equilibrium cannot always be achieved, leaving many with learning disabilities lacking autonomy.
Moreover, the paper argues that people with learning disabilities and their residential carers should be involved in policy creation and revision in order to provide a service which better reflects the lived experience of those with learning disabilities and promotes their autonomy.
Petner-Arrey, J and Copeland, S.R (2014) ‘You have to care.’ Perceptions of promoting autonomy in support settings for adults with intellectual disability. British Journal of Learning Disabilities. Vol. 43, p.p. 38-48 [abstract]
Booth, T. and Booth, W. (1994) Parenting under pressure: Mothers and Fathers with Learning Difficulties. Buckingham, Open University Press.