Ideal och vardag : Inflytande och självbestämmande med personlig assistans

Personal assistance was introduced in 1994 as part of “LSS”, Act concerning Support and Service for Persons with Certain Functional Impairments. The intention of this assistance is to enable people with severe and extensive impairments to live a “normal life”. In this law text the importance of the user’s influence on how to form the assistance is emphasized; the user also has the opportunity to choose which organization should carry out his/her achievement. The user is encouraged to act independently and autonomously. The main purpose of the present investigation is to shed light on how the user’s influence in the process of gaining assistance and independence in everyday life is perceived and described. The study is based on different forms of qualitative interviews with users, legal representatives, assistance employers, handling officers and personal assistants. The results show that many users need support from others in the process of applying for assistance. Obstacles in the user’s influence are mainly the impairment itself; a failing body, feebleness and other difficulties. Other impediments are lack of knowledge of one’s rights, legislation and the organization of the assistance. Self-determination in everyday assistance is facilitated by the support being given by a few familiar persons in the household. The level of self-determination depends mainly on the relationship between the user and the personal assistant. Users develop different strategies such as adapting the content of the day to the assistant who works that particular day or to employ family members as assistants. For other users it can be difficult to find functioning strategies for self-determination and they imply that the assistants take over the home. The home is being turned into a workplace and the user’s independence in decision-making is questioned and threatened. Many people with severe disabilities have a legal representative. In the inquiry the interviewed representatives are also relatives of the user – often parents. In the application process for assistance the results show that user influence is facilitated when there is a third party who can speak for the user. In daily life however self-determination in the user’s assistance becomes complicated – it becomes difficult for assistants and assistance employers to interpret the difference between the will of the user and the will of the relative/representative. The Act concerning Support and Service for Persons with Certain Functional Impairments becomes a paradox when the individual user lacks chances to live up to an active and responsible role which is assumed in the text of the law. The frailest persons lacking representatives run the risk of heavier vulnerability. Then the right to independence and self-determination in their own lives is reserved for the users who have a strong voice of their own or a strong willpower from their legal representatives who are able to claim their rights to influence and self-determination