Abstract
The Swedish system of disability support is often praised for its comparably well-developed Personal Assistance (PA) scheme. PA is formally prescribed as a social right for disabled people with comprehensive support needs in the <em>Act Concerning Support and Services to Persons with Certain Functional Impairments</em> (LSS). In the decade following the introduction of LSS in 1994, the PA-scheme expanded steadily to accommodate the support needs of more and more disabled people. It is commonly believed that the expansion of PA has substantially boosted the agency of both disabled people and their relatives. This article critically discusses in what direction the Swedish system of disability support has moved in the past decade. Is the common image of a system moving towards an ever increasing <em>defamilialization</em> of disability support still accurate? Or are there signs of stagnation, or even reversal towards refamilialization? What are the possible consequences of the more recent developments for disabled people and their relatives in terms of agency and equality? These questions will be discussed with the help of an analysis of the regulatory framework of disability support, statistical data and findings from public reports.
Highlights
The support of disabled people was almost exclusively a family matter with very little involvement of other agents
The available studies suggest that the Scandinavian countries have achieved a comparatively high degree of defamilialization when it comes to disability support
It is assumed to be universally accessible for all disabled people with comprehensive needs of assistance
Summary
The support of disabled people was almost exclusively a family matter with very little involvement of other agents. Social Inclusion, 2018, Volume 6, Issue 2, Pages 56–65 form of support changed from residential facilities to home-based support services This partial transfer of support responsibility from the family to the state has by some been coined as defamilialization (e.g., Lister, 1994; McLaughlin & Glendinning, 1994). The available studies suggest that the Scandinavian countries have achieved a comparatively high degree of defamilialization when it comes to disability support. In these studies (e.g., Askheim et al, 2014; Szebehely & Trydegård, 2007), the role of the Swedish Personal Assistance (PA) system in particular, introduced in the Act Concerning Support and Services to Persons with Certain Functional Impairments (LSS) has been emphasized. The intention with the reform was to advance self-determination and participation in society for people with comprehensive support needs
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