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From Citizen to Patient: The Influence of Personal Assistance on Disability Rights in Sweden Experienced by Responsible Officials
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research. (Hälso- och sjukvårdsforskning)ORCID iD: 0000-0002-0905-5097
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.ORCID iD: 0000-0002-8623-2413
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.ORCID iD: 0000-0002-3921-5522
2026 (English)In: Disability & Society, ISSN 0968-7599, E-ISSN 1360-0508, Vol. 41, no 4, p. 1085-1105Article in journal (Refereed) Published
Abstract [en]

Personal assistance (PA) in Sweden, regulated by the Act concerning support and service for persons with certain functional impairments, aligns with the Convention on the Rights of Persons with Disabilities. This paper explores the facilitators and barriers impacting the access to PA in Sweden. A thematic analysis of 15 interviews was conducted with public officials at the Swedish Social Insurance Agency, who develop and manage the PA-allowance granting process. A medicalised application of this granting process was revealed due to external and internal factors, i.e. legal changes in the Act, caselaw, PA service marketisation, shifting policy priorities, and inadequate monitoring of PA, a high complexity of the PA-allowance granting process and organizational pressure on the officials. A medicalised policy application of the PA-allowance granting criteria risks undermining disability rights policy goals. The paper emphasizes the importance of follow-ups to maintain calibration and understanding of policy outcomes over time.

Place, publisher, year, edition, pages
Routledge, 2026. Vol. 41, no 4, p. 1085-1105
Keywords [en]
Disability policy, governance, policy implementation, medicalisation, social security
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:uu:diva-550198DOI: 10.1080/09687599.2025.2584173ISI: 001616975600001Scopus ID: 2-s2.0-105021407814OAI: oai:DiVA.org:uu-550198DiVA, id: diva2:1937234
Funder
Swedish Social Insurance Agency
Note

Title in the list of papers of Heléne von Granitz's thesis: From citizen to patient; how can the medicalisation of personal assistance for persons with disabilities in Sweden be understood?

Available from: 2025-02-12 Created: 2025-02-12 Last updated: 2026-04-24Bibliographically approved
In thesis
1. Enabling disability rights in practise: Understanding how the governance of state-funded personal assistance is fulfilling the Swedish LSS Act
Open this publication in new window or tab >>Enabling disability rights in practise: Understanding how the governance of state-funded personal assistance is fulfilling the Swedish LSS Act
2022 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2022. p. 61
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1852
Keywords
Activities of daily living, disability policy, LSS Act, governance, ICF, participation in society, personal assistance, policy refinement, policy tool, public policy, social security, Sweden, UNCRPD
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Health Care Research
Identifiers
urn:nbn:se:uu:diva-478735 (URN)978-91-513-1546-1 (ISBN)
Public defence
2022-09-09, A1:111a, BMC, Husargatan 3, Uppsala, 09:00 (Swedish)
Opponent
Supervisors
Funder
Swedish Social Insurance AgencyForte, Swedish Research Council for Health, Working Life and Welfare, 2012-0921Norrbacka-Eugenia Foundation, 851/13
Available from: 2022-08-19 Created: 2022-06-26 Last updated: 2026-04-24

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von Granitz, HeléneSonnander, KarinWinblad, Ulrika

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