Family Care of People with Learning Disabilities
A Study of the Everyday Life of Carers and Care Recipients in the Finnish Welfare State
In Finland, many persons with learning disabilities continue to live with their parents even in adulthood. This means that they also receive the bulk of the care they need from their parents. Recently, support systems for family care have been developed as part of the process of deinstitutionalisation, in order to develop community-based alternatives to institutional care.
Supporting family care can also be seen as a way of curbing public expenditure, and is hence in concordance with the reigning neoliberal political-economic practice and thinking. Neoliberalism is not, however, the only paradigm guiding the deinstitutionalisation process. At the same time, ideas about human rights of persons with disabilities are gaining ground in Finland. These rights include the right to choose the place of one’s residence and where and with whom one lives on an equal basis with others. These rights can sometimes contradict with the promotion of family care.
This research project explores the ways in which the recent changes in the formal service system and the wider social development figure in the everyday lives of families with adult children with learning disabilities. The focus is in the construction of the identity and the status of both the family carers and care recipients. The research project seeks answers to the following questions:
- How has the family come to the decision to keep the adult person with learning disabilities at home? What are the possibilities of the persons with learning disabilities to get their voice heard when decisions are made about their living arrangements?
- How are the care responsibilities allocated between the family and the welfare state? How are they allocated within the family?
- How do the parents balance their care responsibilities with other realms of life, such as paid employment?
The data of the research project consists of biographical interviews with parents who care for their adult child with learning disabilities at home. The interviews consist of both narrative and semi-structured questions. The interviews have been made either with the parent who has the primary responsibility of care or both parents, if they so wished. Also, the persons with learning disabilities have been asked about their wishes concerning where they would like to live and how. In this way, they were given an opportunity to express their views of the care they receive. Interviews have been made with fourteen families who live in different parts of Finland.
The research project started in August 2008. Until the end of 2009 it proceeds as a part of the larger research project “Working Carers and Caring Workers: Making Paid Employment and Care Responsibilities Compatible?” that is funded by the Academy of Finland. From 2010 to 2012 it continues as an independent postdoctoral researcher’s project funded by the Academy of Finland.