Quality of personal assistance: Shaped by governments, markets and corporations

Abstract

Background: Swedish personal assistance for people with severe disabilities became a legal right in 1994. The support is completely financed by the government and with a few exceptions transferred to External assistance providers (EAPs). There are three types of EAP; the municipality (i.e. public providers), private firms and user-cooperatives. An EAP is the formal employer of the user’s personal assistants and supports the user with a wide range of services. Different EAPs have different perspectives on personal assistance, different legal frameworks and different raisons d’être. Aims: The thesis has three aims; (1) to explore what users desire of their personal assistance i.e. their EAPs and their personal assistants, (2) to compare user-satisfaction across different EAPs, and (3) to compare the number of assistance hours between users of different EAPs. Participants: Adult users in the area of Gothenburg who received personal assistance for basic needs (e.g. hygiene, meals, dressing, communication) for at least 20 hours a week, and who arrange their personal assistance through an EAP. Methods: Three different research methods were used in the thesis; (1) qualitative interviews with 12 users, in order to explore what users desires of their personal assistance, (2) survey study of 427 users (response rate 39.3 %) in order to compare user-satisfaction across different EAPs, and (3) register data from the Swedish Social Insurance Agency in order to compare number of assistance hours across users with different EAPs. Results: Users would like their assistants to be obedient, reliable, informative, alert, respectful, considerate, friendly, pleased and practical. Users would like their EAPs to have a “proper” (well thought through) ideology of personal assistance, interacting with the user in a service-minded way, mediating between users and personal assistants, providing good working conditions for personal assistants and representing the user politically. In 2008, users of personal assistance were more satisfied with other EAPs (i.e. private firms and user-cooperatives) than municipal providers. During the period 1994 – 2006, an average user with a private firm had received 18.4 percent more assistance hours than an average user with a municipal provider.