Interviews with Personal Assistance Users and Independent Living Activists
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.
The aim of the present work is to evaluate the German and Swedish systems of personal assistance on their compliance with the CRPD. The research question asks how the practical implementation of the personal assistance systems in Germany and Sweden fulfill the requirements of the criteria defining personal assistance according to the General Comment on Article 19 of the CRPD in comparison to their theoretical implementation. Besides a theoretical evaluation of the systems, semi-structured interviews with experts were conducted to answer the research question. Six interview partners who are assistance users in Germany and Sweden were asked how they evaluate the implementation of personal assistance according to the requirements of the General Comment. Qualitative Content Analysis according to Mayring (2015) was used to analyze the interviews.
The results of the theoretical and practical evaluation show that neither Germany nor Sweden fulfills all requirements of the General Comment on personal assistance. In both countries, the systems of personal assistance were rated better in the theoretical than in the practical implementation. The main problem in both countries is the funding of personal assistance. The funding is not based on personalized criteria and is not sufficient to cover all assistance needed. In Germany, disabled people have to fight for a sufficient budget, which can vary between authorities. Furthermore, German assistance users often have to pay a personal contribution depending on their income and assests. In Sweden assistance users experienced cut-backs in personal assistance allowances because of reinterpretations of basic needs as an eligibility criterion. The results show that the personal assistance systems in Germany and Sweden are in need of improvement. The presented work provides a basis to promote the political discussion about personal assistance as a tool for independent living.