How can states ensure access to personal assistance when service delivery is decentralized? A multi-level analysis of Iceland, Norway and Sweden

ABSTRACT

Article 19 of the United Nations (UN) Convention on the Rights of Persons with Disabilities requires states to ensure that persons with disabilities have access to a range of support services, including personal assistance. The Convention is an agreement between state parties and the UN. However, in practice, disability services are often implemented at the local level. Drawing on the findings of qualitative research in Iceland, Norway and Sweden, this paper examines a paradox whereby states commit to ensure access to support services, but decentralize responsibility to autonomous and independent local governments. A multi-level governance framework is applied to analyse the findings of qualitative inquiry with policy-makers, local government officials and leaders of independent living organizations in all three Nordic countries. A multi-level analysis highlights the tensions and contradictions between decentralization and human rights commitments.

KEYWORDS:

• Decentralization
• independent living
• personal assistance
• UN convention on the rights of persons with disabilities

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Ciara Brennan held a Marie Curie fellowship at the Centre for Disability Studies at the University of Iceland, where she is a PhD candidate. Her thesis focuses on Article 19 of the CRPD, independent living and personal assistance in Nordic countries.

James Rice is an Assistant Professor at the Faculty of Social and Human Sciences, University of Iceland. His research interests include power, inequality, disability studies, urban issues, bureaucracy.

Rannveig Traustadóttir is a Professor and Director of the Centre for Disability Studies in the School of Social Sciences at the University of Iceland. Much of her research examines the intersection of disability and other categories of inequality and how these create multiple layers of discrimination and social exclusion in disabled people’s lives.

Peter Anderberg is an associate Professor and Deputy Head of Department of health in Blekinge Institute of technology in the south of Sweden. His research focuses on independent living, personal assistance and the use of various kinds of technology to improve function and health.

Notes

1. Hereafter refered to as the Convention or the CRPD.

Additional information

Funding

This work was supported by the FP7 Marie Curie Initial Training Network (ITN) DREAM, Disability Rights Expanding Accessible Markets (DREAM) [Project ID: 265057].