Live life! Young peoples' experience of living with personal assistance and social workers' experiences of handling LSS assessments from a child perspective

The Act Concerning Support and Services to Persons with Certain Functional Impairments, in which the provision of personal assistance (PA) is included, came into force in 1994. It paved the way for strengthened rights for people with disabilities, in which the overall intention was to give disabled people equal opportunities and enable full participation in society.

This thesis explores adolescents’ and social workers’ perspectives on and experiences of personal assistance. The overall aim of this research was to gain empirical knowledge and a deeper understanding of young assistance users’ experiences of living with PA and the social workers’ experience of assessing children’s right to PA and other LSS interventions. In paper I, a grounded theory (GT) analysis showed that the adolescents’ main concern was to achieve normality, which was about doing rather than being normal. The findings underline and discuss the interconnectedness between the different enabling strategies adopted by the adolescents, and to a lesser extent discuss disabling barriers for which PA cannot compensate. In paper II the adolescents describe their experiences of the assessment process which precedes possible access to PA. The content analysis reveals that the adolescents’ participation was determined by the structure of the meetings, in which the assessments tools played a decisive part. The adolescents adapted their behaviour in response. Paper III is based on a phenomenological approach to social workers’ responses to children and young peoples’ ability to participate in meetings and decision making concerning their own support interventions. It reveals difficulties in grasping what participation should be and result in. In paper IV, a GT study, the emerging theory explains how case workers tried to maintain their professional integrity by adopting various strategies.

The synthesis of the four studies has resulted in a clarification of how the individual, organizational and societal levels interact through legislation and policy documents, meetings and norms to create certain processes and interactions between the different stakeholders. However, further research is necessary to explore the long-term effects of the current changes to Swedish LSS-legislation regarding both the professional conduct of the case workers responsible for assessing LSS interventions and the consequences of such decisions for assistance users and their families.

List of scientific papers

I. Hultman, L., Forinder, U., and Pergert, P. (2016). Assisted normality: a grounded theory of adolescent’s experience of living with personal assistance. Disability and Rehabilitation. vol. 38, no.11, 1053-1062.
https://doi.org/10.3109/09638288.2015.1091860

II. Hultman, L., Pergert, P., and Forinder, U. (2017). Reluctant Participation: the experiences of adolescents with disabilities of meetings with social workers regarding their right to receive personal assistance. European Journal of Social Work. no. 4; 509-521.
https://doi.org/10.1080/13691457.2016.1201051

III. Hultman, L., Öhrvall, A-M., Pergert, P., Fugl-Meyer, K., and Forinder, U. Elusive participation: Social workers’ experience of disabled children’s participation in LSS assessments. [Submitted]

IV. Hultman, L., Forinder, U., Fugl-Meyer, K and Pergert, P. Maintaining professional integrity: Experiences of case workers performing the assessments that determine children’s access to personal assistance. [Accepted]
https://doi.org/10.1080/09687599.2018.1466691