The Swedish Inheritance Fund has granted just under SEK 6.8 million to the Independent Living Institute in collaboration with the Raoul Wallenberg Institute to implement the three-year project “Article 19 as a Tool”. “Article 19” refers to the UN Convention on the Rights of Persons with Disabilities: Article 19 – Living independently and being included in the community.
The background to the project is that many people with disabilities are still in situations lacking self-determination in their daily lives and being excluded from participation in society. Although Sweden has formally phased out institutions, there are now fears that they are on the rise again due to cutbacks in personal assistance.
The concept of institution is not about a certain type of building, but of being deprived of freedom and control. Even small group homes and people living in their own accommodation can being deprived of freedom and control if, for example, they share staff or have little influence over their daily lives.
Sweden has ratified the UN Convention on the Rights of Persons with Disabilities, and is obliged to implement the rights under the convention. The UN Committee on the Rights of Persons with Disabilities continue to develop the understanding of the rights under the CRPD. The Committee’s General Comment no 5 on Article 19 (GC 5) makes clear that segregated dwellings where disproportionately many people with disabilities must share the same environment should not be allowed. The notion that people with intellectual disabilities would not be able to live outside a group home or similar is also contrary to Article 19, according to GC 5. The General comment is clear on your right to decide what services you need and what daily activities you will participate in.
So how well does Sweden live up to the clarifications expressed in GC 5? Does life in group housing or service housing, for example, meet the requirements of Article 19? And how is it with Conservatorship or Guardianship and influence on daily activities? These are just some of several interesting issues where a clearer instrument is needed to be able to make an objective assessment. The issues are highly relevant because Sweden this year will submit its report to the UN on how the country complies with the convention.
Article 19 of the UN Convention on the Rights of Persons with Disabilities reads:
States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.