Family life with personal assistance
Viveca Selander, Institution of Social Work, Stockholm University
Abstract
Personal assistance (direct payment) for severely impaired persons was introduced in Sweden in 1994. Today 13 500 individuals are elligible for the scheme with an average of 103 hours per week. There is no principal against employing family members as personal assistants, but there are no statistics available as to the number of family members employed. The main aim of this study is to investigate the everyday life in families where one of the parent's has the right to direct payments and can employ his or her own personal assistants. The study is based on interviews with users and their families combined with observations on the interplay between the users, their children and the personal assistants. In this paper some results of the study are reported, with a focus on the role of family members and other relatives as paid and unpaid providers of support. The study shows that the support from family members and relatives is of great importance in everyday life. What kind of contribution the family gives may vary if the user can supervise the assistance herself or if she needs support for leading and coordinating the assistance. In all of the families in the study family members give support to the user and in all families but one, family members or relatives are or have been employed as assistants. Thus they contribute with paid as well as unpaid work. Family members may serve with help in acute situations and as continuous help at night as a way of diminishing the number of 'outsiders' at home. In some families the extent of the assistance is a subject of discussion. The users may refrain from receiving help from their personal assistants in evenings and nights, so that the family may have some time on their own. The users' dependence/ or independence of support from the family members is put in opposition to the need of family privacy. In all families but one, one or more of the family members or the relatives are employed as personal assistants. In some cases there is a clash of interest between the user and a relative in that direct payments have become an important source of income. Especially in situations where the aid doesn't work very well, it may be difficult for the user to give their relative notice to quit, if the work as personal assistant is the relative's main occupation. Receiving help from family members and relatives may also touch upon areas that are taboo. To accept help with personal hygiene may imply that the limit for personal integrity is crossed. Siblings normally don't have contact in this intimate way and when you have grown up and have a family of your own it feels strange to be obliged to get intimate help from your parents once more. The study shows that help given by relatives contains many forms of compromises, both for the person who gives the help and for those who receive it.