1. 1 Family life with personal assistance – formal, semi-formal and informal help providers Presentation at the Disability Studies: Research and Learning Conference Lancaster 18 – 20 September 2006 Viveca Selander Department of Social Work Stockholm University 106 91 Stockholm viveca.selander@socarb.su.se

2. 2 Aim of my doctoral thesis Investigate and describe the experiences of everyday life with personal assistance in a family where one of the parents is disabled Main question: What does it mean to live and work with personal assistance from the users, the relatives and the personal assistants point of view?

3. 3 User Next of kin Personal assistent* A three party perspective

4. 4 Design of the study A qualitative study with an explorative and theory generating onset Methods: interviews and observations Physically disabled parents, their families and personal assistants (working in other families) First analysis of interviews with eight users and their families where I have been inspirated by a life course perspective Interviews with six personal assistants (The result of those interviews will be accounted for at another occasion)

5. 5 Concepts of importance to life course pespectives Ageing is seen as a progressive process Concepts of time: Historical time Cohort Social relations Social time tables Agency (Giele and Elder 1998, Jeppson-Grassman 2006) How disability has affected different phases of life, roles and identities (Priestly 2001)

6. 6 The Swedish model of direct payments – personal assistance Personal assistance was introduced 1994 as a measure for persons with extensive and lasting impairments who need assistance with basic requirements in their daily living. (Act (1993:387) of support and service to people with certain functional impairments) The Social Insurance Office decides and pays the Assistance Benefit above 20 h/week. The municipalities are responsible for the first 20 h/week. The user choses assistance provider: the municipality, a private company, a users-cooperative or to be employer her/himself. Family members may be employed as assistants, except for those living in the same household as the user who may not be employed directly by the user.

7. 7 Personal assistance in figures 2005: 13 576 persons were granted personal assistance according to LASS. The average number of assistance hours /week was 103. The users in this study have been granted between 50 – 175 hours/week.

8. 8 Formal, semi-formal and informal help providers Formal help provider – outsider employed as personal assistant Semi- formal help provider – family member or next of kin salaried by assistance allowance Informal help provider - family member, next of kind or friend who provides help without being paid.

9. 9 Next of kin as semi-formal or informal help providers In this study approximatly 40 per cent of the assistance hours were provided by next of kin In a study of living conditions 30 – 40 per cent of the persons with personal assistance were married or living together with somebody, wich would correspond to between 3 600 – 4 800 households. (National Social Insurance Office 2002)

10. 10 Some early results: The time of the disability First disabled - then parent First parent – then disabled

11. 11 Experiences of next of kin as semi- formal and informal help providers Arguments for Privacy Small children - fewer faces Supervision Recharge batteries ”Stand-ins” Arguments against Partner’s dependency User’s dependency Conflict avoidance Unwished-for insight No supervision Fear of loosing autonomy Obscure roles

12. 12 Consequences of family members as help providers Economical dependancy Integrity borders Gender aspects Parents helping children Children helping parents Help from mother-in-law

13. 13 Conclusion  Differences in experiences and points of view related to the time in life when disability ocurred  Integrity and/or mutual dependence  Risk for a ”Commodification of care”?