The Right to Personal Assistance for Persons with Disabilities in Sweden

Tomorrow (May 26), Lena Hallengren, the Swedish Minister for Health and Social Affairs holds a press conference on the government investigation on how to strengthen the right to personal assistance for persons with disabilities in Sweden. Anna Bruce, Senior Researcher at RWI, has assisted the investigation. Her paper outlines the implications of the Convention on the Rights of Persons with Disabilities, in particular Article 19 Living independently and being included in the community, for Sweden’s obligation to provide personal assistance to persons with disabilities. Anna Bruce welcomes this opportunity:

As my colleague Anna Nilsson and I wrote in an OpEd 3 years ago, it is key that the process to create Swedish law and policy is actively and visibly grounded in Sweden’s obligations under international human rights law. This is in itself a procedural obligation under that law. Crucially, it is also necessary for the realization of human rights. How will this happen, if not through law, policy and budgeting?

The main investigator is Fredrik Malmberg, Director of the National Agency for Special Needs Education and Schools and former Ombudsman for Children in Sweden. He and his team has worked on the investigation since January 2020.  Anna Bruce is cautiously optimistic:

I have not yet seen the suggestions for law and policy made by the investigator and his team, but my hope is of course that these are firmly grounded in international human rights law and in particular in the Convention on the Rights of Persons with Disabilities.  An investigator who commissions a paper on human rights clearly sees it as central to the issues at hand. But I will know more when I have read the suggestions for law and policy forwarded by the investigation. This is what matters in the end.

Specifically, the governmental investigation focuses on the consequences for the access to personal assistance in Sweden of three particular legal concepts: ‘parental responsibility’, ‘self-care’ and ‘monitoring’. Anna Bruce recognizes that this limited scope on specific concepts risks diverting the focus from the end game: Do persons with disabilities actually enjoy their right to personal assistance or not?

The perspective of human rights law is crucial here. It is person centered and outcome centered and does not make room for actors within the state to pass responsibility around until nobody knows who to hold responsible for what. It makes clear that it is Sweden’s responsibility to change processes, laws (including legal concepts), and practices to the point where these can actually deliver human rights for persons with disabilities. And all change must be done with the participation of persons with disabilities and their representative organisations.

The press conference takes place tomorrow (May 26)  at 11.00 CET (in Swedish) and Anna Bruce’s paper (in Swedish) will be published with the report.

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