On Sunday July 21 2024 Adolf had an accident that led to the stopping of his heart. Adolf is loved by many, respected by even more. He with others brought the Independent Living philosophy to Europe and he introduced it to Sweden from the United States in the 70s. Adolf lifted the concept of personal assistance with his endeavors changing disability policy in Sweden and in many other countries. People with disability grew stronger realizing they had the right to equal rights and self -determination. Adolf founded the Independent Living Institute, ILI in 1993. Before this he mobilized people and founded the STIL project in the 80s with others who also needed personal assistance.

In Sweden there are changes in the law being viewed for personal assistance. One change that is now on the table is to make the state solely responsible for personal assistance and not as it is today – a division between the state and the municipalities.

In March, results were presented from an investigation suggesting that personal assistance should be entirely decided and paid for by the state. This is something that the Swedish cooperative STIL has been lobbying for a long time. If this proposal were to go through, those people who currently have their personal assistance granted by the municipality will be transferred to the Swedish Försäkringskassan, or the national authority.

1 oktober 2021

Till: Socialdepartementet

Diarienummer: S2021/04587

Vår kontaktperson: Jamie Bolling, jamie.bolling@independentliving.org

Remissinstans: Independent Living Institute

Independent Living Institute (ILI) är en ideell tankesmedja och projektplattform inom medborgarrättsrörelsen Independent Living av personer med funktionsnedsättning. Våra grundläggande principer är självbestämmande, självrespekt och empowerment (bemäktigande och bemyndigande). Vi lämnar här vårt remissvar på betänkandet SOU 2021:37 Stärkt rätt till personlig assistans.

Stiletten var STIL-kooperativets organ som gavs ut i pappersform fram till 2011. 1986 kom dåvarande verksamhetsledaren Bengt Elmén på idéen att samla våra frekventa utskick till medkämparna och medlemmarna och allmänheten i ett nyhetsbrev med detta vassa namn. Stilettens uppgift var att hålla dem informerade om

Interviews with Personal Assistance Users and Independent Living Activists

Master’s Thesis

Abstract 

Article 19 of the UN Convention on the Rights of Persons with Disability (CRPD) states the right for disabled people to live independently and to be included in the community. The article includes the right to personal assistance as a tool for independent living. General Comment Number 5 on Article 19 of the CRPD criticizes the inadequacy of the implementation of this right and gives clear criteria, which define the term personal as-sistance. These criteria have to be fulfilled in order to call a service personal assistance.

In our project Article 19 as a tool, we welcomed Alex Caputo Janhager as an intern. As a part of his internship and introduction to Sweden, he wrote a paper on the Independent living Institute and its activities, the Swedish political system and Sweden’s relation to international human rights norms. The paper is available at the end of this post.