The experiences of support work relationships within the ruling relations: An institutional ethnographic study on the relationships between personal budget holders with intellectual disabilities and their support workers in Germany and Australia

Abstract

Many countries have introduced personal budgets for people with intellectual disabilities. A personal budget is a sum of money that allows people with intellectual disabilities to purchase their own support work. Support workers are people who assist budget holders to organise and do activities, such as household tasks and social activities in the community. This thesis uses care, Ethics of Care and disability studies literature to conceptualise support work relationships – the relationship between budget holders with intellectual disabilities and their support workers. It investigates two research questions: (1) How do people with intellectual disabilities in receipt of a personal budget and their support workers experience their relationships with each other? (2) How are the lived experiences of people with intellectual disabilities and their support workers in their relationship with each other influenced by personal budget policies organising support work? Through the methodology of Institutional Ethnography, the researcher explores both questions in Germany and Australia. This methodology states that people’s everyday experiences are influenced by the ‘ruling relations’, which are policy processes and people’s practices that organise social settings. During one year of ethnographic field research in Germany and Australia, the researcher conducted participant observation and interviews with five people with intellectual disabilities and their support workers from each country. Additionally, the researcher conducted interviews with ten service professionals in each country and analysed disability policy documents from each country. By using the analytical framework of Institutional Ethnography, the study found that the constituents of the ruling relations included people’s views and expectations about the support work relationship, the support work context and the policies of personal budgets. The policies of personal budgets were only one constituent of the ruling relations that operated within a wider social policy context. The interconnection between the three constituents influenced the ways in which the two people engaged in the emotional form of support work (the social interaction) and the practical form of support work (the support work activities) which affected their relationship. The study argues that disability research, policy and practice needs to be cognisant of all three constituents to improve the quality of support work relationships.