Familier med funksjonshemma barn i velferdsstaten

En kvalitativ studie av foreldre med funksjonshemma barn, koordinator og hjelpeapparatet

Abstract

In this thesis, I investigate the encounters between parents with disabled children and welfare services. Previous research has highlighted how families with disabled children experience a lack of support from the welfare state. I build on previous research by combining the perspectives of parents and service providers. Particularly, I investigate the system of coordinators for users who require long-lasting and comprehensive services. The thesis uses a longitudinal qualitative dataset consisting of individual interviews with parents and coordinators, observations of meetings, and focus groups with coordinators. The sample consists of 12 parents and 39 coordinators. In the articles, I explore how the interactions between parents and coordinators are framed by social policy and social structure. In the first article, I explore how parents and coordinators negotiate tasks related to the coordination and administration of services. I use the concept of administrative burden to conceptualise what costs parents face in navigating welfare services. The findings demonstrate that coordinators vary in their interpretation of which tasks fall under their responsibility, and which tasks are deemed ordinary parental responsibilities. In the second article, I explore whether levels of cultural capital and family resources influence communication with professionals among parents with disabled children. The findings suggest that working-class and middle-class parents differ in how they communicate with professionals and deal with frustration. Furthermore, I show that factors such as support from one’s family and network, possessing economic and material resources, as well as having an involved coordinator, were important for the parents’ everyday navigation of welfare services. In the third article, my co-authors and I address the declining use of Individual Plan in welfare services. We identify three main reasons why Individual Plan is not used: Individual Plan is not seen as useful for the user, other professionals do not get involved in the plan, and the digital tool for Individual Plan is seen as cumbersome. The thesis contributes with novel perspectives on the encounters between parents with disabled children and the welfare state. In sum, the thesis shows how families with disabled children experience a gap between their expectations of welfare services and the reality they face. Moreover, the system of coordinators lacks resources, which leads to arbitrariness. I also argue that the system of coordinators and Individual Plan do not address the main challenges for families, how they experience a lack of services, and administrative burdens.