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.
Highlights
The general principles of the Convention reflect the goals of the international independent living movement, which has advocated for personal assistance services since it was established in Berkeley, California in the late 1960s (Dejong 1983)
Decentralization of disability services is a significant challenge for ensuring access to personal assistance and a challenge for human rights advocates and monitors
Some the consequences of decentralization that emerged from our qualitative study are in conflict with the commitments made by state parties under the CRPD
Summary
The general principles of the Convention reflect the goals of the international independent living movement, which has advocated for personal assistance services since it was established in Berkeley, California in the late 1960s (Dejong 1983). Users exercise maximum control over how it is organized and custom-design their personal assistance service according to their individual preference, which includes hiring, training and managing personal assistants (Ratzka 1996).
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