Enabling disability rights in practise : Understanding how the governance of state-funded personal assistance is fulfilling the Swedish LSS Act

Abstract: Personal assistance (PA) is stated in Article 19 of the UNCRPD as an internationally recognised disability right and is operationalised as a measure in the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (the LSS Act). The Act’s overall policy goal is to promote good living conditions for the eligible persons by enabling participation in society on equal terms with others. The governance of PA is a divided responsibility between the municipality and the Swedish Social Insurance Agency (SSIA), which assesses and grants PA-allowance if the PA applicant exceed 20 hours of certain needs per week. The overall aim of the thesis was to explore how the governance of PA-allowance enables to fulfil the LSS Act policy goals. The main findings of the thesis demonstrate a tilt in PA towards a medical model of disability, marked by a domination and an increase of healthcare activities over time. Less activities representing participation in society were found and unequal access to PA activities across age, gender and groups of persons with disabilities. The findings imply an increased risk to social and financial exclusion of PA users. Further, the LSS Act’s rationale and policy goals were shown to have a weakened impact on the SSIA instruction, the refined policy tool which outlines the PA-allowance granting process. A development towards a medicalised application of PA-allowance was found, characterised by healthcare measures to support medical conditions and a shift towards PA users with less ability to partake in the PA-allowance granting process. Factors shown to have influenced the governance of PA-allowance include: case law, changed policy priorities, weakened PA collaboration structures, inadequate monitoring of PA outcomes, strained working conditions at the SSIA and extensive complexities of the PA-allowance application. This thesis illustrates that the SSIA regime logic has thoroughly influenced the LSS policy outcome with time and emphasises the need for social reform policy tools to be continuously calibrated towards the original policy goals to uphold policy compliance. The regression of PA, by gradually resigning to a medical model of disability, demonstrates weakened conditions for Swedish disability policy through the LSS Act to fulfil Article 19 of the UNCRPD.