The population of Iceland is less than 300,000. Everyone knows each other in small towns, and even in the city of Reykjavik. Yet for now, the number of people who have assistance can be counted on one hand. Iceland is a Nordic country, but in terms of personal assistance it has not kept up with the region. “The same development didn’t happen here in the 1970s as in the rest of the Nordic region,” says Rannveig Traustadóttir, a professor at Iceland’s university. She considers the extremely limited personal assistance currently available to be in an experimental stage. Over the past few years change has been underway through efforts such as a personal assistance user cooperative.
Guðmundur Magnusson is vice-chairman of the Icelandic umbrella organization Öryrkjabandalag Islands and mainly works with accessibility issues. He tells us more at ILI’s conference in Stockholm celebrating 25 years of Independent Living in Sweden. He has his own company, which reviews architectural drawings. He is in Sweden now to learn more about personal assistance, though he himself does not use personal assistance. He has examined LSS (the Swedish Act Concerning Support and Service for Persons with Certain Functional Impairments) and feels the law is fairly good. But he does not think anything can be perfect. “There have to be a few things wrong with it and we want to do things right from the start.” In the same philosophical spirit, he notes there is more than one truth. “But Independent Living is a huge truth,” says Guðmundur.
One such truth is that the effort has to come from the bottom up. People who need assistance have to organize it themselves. “But those of us in the disability organizations are happy to provide support and inspiration,” says Guðmundur. “We try to get them started.” One such inspiration was a conference in Reykjavik in the autumn of 2008. It aroused great interest among labor unios, but not enough in the disability movement.
How many assistance users are there in Iceland? Guðmundur looks uncertain and conference participant Theodor Karlsson, who has worked as an assistant, begins counting on his fingers. He does, she does, he... Two have assistance 24/7. Two have part-time assistance. “Iceland is small enough that anyone in the industry knows who is involved. That may sound pleasant, but if any problems arise about someone, rumors spread quickly,” says Theodor.
Theodor began working as an assistant for a friend with a developmental disability while the individual went to school and was then employed by the national government through svædisskrifstofa, a form of social support office. Then he drafted his own contract with svædisskrifstofa with the help of the assistance-user’s mother. This approach enabled him to continue and provided insight into all the ins and outs of assistance in Iceland.
Theodor believes that many people need personal assistance, but do not know where to turn for help, nor do they receive any information about it. Iceland has eight “svædisskrifstofa” offices, where social workers and special education teachers work. In the past it has been possible to get a type of assistance there, but gaining access has been administratively complicated.
The municipality is responsible for assisting people – mainly older persons - to live at home with shopping, household chores or taking a bath, while the national government’s part is to support people with dressing/undressing, toileting and other activities of daily living that are considered to be more person-oriented. Finally, there are special geographic districts responsible only for certain needs such as escort services, i.e. accompanying the person with a disability outside the home. The complexity of the system has led to arbitrariness. “Things are interpreted one way for one person and completely differently for someone else,” says Guðmundur.
Akureyri, a town in the north, has already taken over the entire needs spectrum and Reykjavik municipality will do so around January 1, 2009. Plenty of negotiating is still involved, and it is important to have good connections, especially if you live in a small community. “Those who are most outspoken get help,” says Guðmundur and thinks of those who have strong family members or anyone else who is willing to fight for them. “And it’s important to know some politician,” he says.
Guðmundur has a background as an actor and he has worked at Iceland’s National Theater. I wonder if he is really serious about personal contacts in politics and he reformulates his statement a bit more diplomatically: “Without good contacts, it just takes too much time.”
There is resistance to change. Those who have struggled through the red tape and receive support today through the three-part system have become accustomed to it, according to Theodor. They don’t always see the benefit of something new. But one principle is that in the future system, people will hire their own assistants with cash subsidies. Another advantage that Guðmundur sees in the upcoming personal assistance system, is that the national government will be responsible for its costs. Currently, the local municipality and national government share costs. The national government covers about two thirds, but many Icelandic municipalities are extremely small and have problems with any expenditures.
At the same time, personal assistance reforms at the municipal level should not just be considered to be negative, according to Guðmundur. The services will create jobs in high unemployment areas. Theodor also leans toward believing that the national government is best suited; the municipalities do not have adequate competence and the national government certainly would not contribute the necessary money if personal assistance were a local government responsibility. Others feel the national government is too large, that too many contacts would have to be maintained in order for personal assistance to work.
One important argument after the economic collapse in Iceland is to convince the politicians that assistance is not more expensive than other initiatives. “Here, we’ll refer to studies (see below) that were carried out in Sweden,” says Guðmundur.
Iceland is traditionally a country of laws, but the law does not always apply in small Icelandic municipalities. For example, in 1979 legislation passed about accessibility in public buildings, but much still remains to be done. Nevertheless, Guðmundur Magnusson is optimistic about the new personal assistance law and believes that the politicians want to allow the users to control their assistance through a cash subsidy.
Guðmundur Magnusson and Theodor Karlsson were interviewed by Emil Erdtman on November 28, 2008
Evaluations of the economic costs and benefits of the personal assistance payments in LSS, The Swedish Act Concerning Support and Service for Persons with Certain Functional Impairments.