25 years of Independent Living in Sweden
Speech by Bengt Westerberg, chair of Swedish Red Cross
and former Minister of Social Affairs, 2008.11.28.
22 years ago I met with Adolf Ratzka for the first time. I was then a politician, the leader of the Liberal party in Sweden, Folkpartiet and had welfare policy for disabled people high on my agenda. Adolf and Bengt Elmén, who also was present when we met in 1986 and who is present here today, told me about the social experiment they had initiated in Stockholm and some other municipalities to substitute the conventional social services provided by the local authorities with personal assistance. Their aim was to become masters of their own lives, to get away from the humiliating situations where every service should be assessed and approved by the social sector.
I was very inspired by that meeting. Only a short time after, I gave a speech in the Swedish Parliament where I talked about STIL and the revolutionary idea of it. It is a dream, I said, to make personal assistance a right for all persons with extensive disabilities. One and a half year later, the residing government set up a commission on disability policies. In the terms of references, which were written by Bengt Lindqvist who many of you know, it was requested among many other things to investigate the possibility to introduce personal assistance as an alternative. By coincidence, I had become minister of social affairs when the report of the commission was delivered in the beginning of the 1990’s, and when the government in 1993, based on that report, presented its bill on the personal assistance act to the Swedish Parliament.
I dare say, as Ulrik Lindgren also stressed, that this reform has been extremely important and highly appreciated by those affected, but it has also been questioned by many, more or less since it was introduced. Some people, not least some local politicians, claim that it has become too expensive. It is true that it has cost more than was calculated by the commission and the government in the beginning of the 1990’s. There is one main reason for that. Before, the personal assistance act and the related act on support and services to disabled persons, were implemented the size of the support provided by the local authorities was decided by their budgets. On average, the beneficiaries then got about 40 hours per week. The new law was a rights based law. The right must be satisfied irrespective of budget restrictions. We must no longer ask how many hours the budget can pay but how many hours the affected person needs to satisfy the needs included in the law.
We can see the result today, 106 hours instead of 40 and of course that costs. Those who think it is too expensive must also think that 106 hours is too much, that this means affluence for the beneficiaries. People living in affluence are often assumed to lead easy lives but, of course, this is never the case for the beneficiaries of the personal assistance act. Even if some critics apparently think that disabled persons live in affluence I have not met a single critic who envied them. The critics have not been totally silenced but on the whole the personal assistance act is now accepted and supported by a big majority in politics and among ordinary people. Personal assistance has meant a revolution. For many beneficiaries life is better today than before but of course we have not eliminated the lacing capabilities we have only managed to partially compensate them. Personal assistance is one important step but a lot more can be done to make our society inclusive and open for all. To reach that goal, we have to combine reforms that aim to make our society more accessible and reforms aimed at increasing individual capabilities.
Let me finish by congratulating STIL to its 25 years. Your organisation has so far been of utmost importance and I am sure that it will play an important role in Sweden also in the future.
[edited transcription of speech]