Empowering Parents as Co-producers: Personal Assistance for Families with Disabled Children

Line Jenhaug,Ole Petter Askheim

doi:10.16993/sjdr.57

Abstract

Personal assistance (PA) is seen as an important tool for empowerment, independence and participation for disabled people, traditionally for adults. In Norway, PA was extended to families with disabled children in 2006, but the extent so far is modest. The change meant that the parents could act as managers for their children’s assistants. A central issue in this article is to what extent co-producing PA with the municipality empowers the parents as family managers. The empirical basis is a study among Norwegian parents with disabled children who receive PA. The data indicate that PA makes parents feel more empowered and improves their control and coping. It also gives their children the benefit of both parental care and increasing independence. However, in the decision-making process of granting and following up PA, the parents also experience that they are not regarded as equal co-producers by the municipal services.

Highlights

The empirical background for the article is a qualitative study among parents with disabled children in Norway who received personal assistance (Jenhaug 2014)
Personal assistance (PA) is a result of initiatives and struggles among disabled people to achieve empowerment, independence and the right to participate in society on equal terms to those of non-disabled people (DeJong 1983; Barnes and Mercer 2006; Glasby and Littlechild 2009)
Families with Disabled Children When PA is placed on the agenda as a scheme for families with disabled children, the main reason is that a disabled child often requires considerable efforts by the families (Helse- og omsorgsdepartementet 2005)

Summary

Introduction

The empirical background for the article is a qualitative study among parents with disabled children in Norway who received personal assistance (Jenhaug 2014). A main reason was the rationale behind PA: the users should have optimal influence and control over the arrangement They should be at an age where they have the authority to decide over their own lives and how their services should be organized and implemented. Parents often feel that they are left to themselves and have to find their own way through what they see as a complicated conglomerate of services (Kittelsaa and Tøssebro 2014) They are critical to the thresholds and barriers they have to face and the degree of municipal willingness that is dependent on the attitude of the individual care workers

Methods

Results

Conclusion