25 years of Independent Living in Sverige
Panel: Models, milestones and achievements by the Swedish Independent Living organisations, Adof Ratzka, 08.11.2008
Independent Living Institute – a think tank for policy development
ILI was established to push issues that the assistance cooperative STIL was not capable of pursuing. The objective was and is to transfer the IL-view on personal assistance also to other areas of society for example transports and technical aids. The objective is also to influence in a different manner. Within the established disability movement they are very often satisfied reviewing the government, being a body to which a proposed measure is referred for consideration, to react on already formulated proposals. As we see it, the IL-movement has to be several steps ahead, we have to put forth our own agenda, work proactively and raise issues. As the best experts on our needs we have to take the initiative and propose solutions to our problems.
The Independent Living Institute’s proposals to solutions often involve starting something totally new outside the existing structures. Take personal assistance: instead of demanding improvement of home care services and cluster housing – as others had done for years without result – we choose to take control ourselves with the help of government money and though deserting the municipality. Take the project “Taxi for all”: instead of pushing for yet another marginal adjustment within the existing special transport we took initiative of a pilot project with wheelchair adapted cars which run within the regular taxi traffic and which could take customers with or without disabilities.
Our recipe for societal change is this: When we see a feasible solution to a problem we try to prepare a project proposal, find financing, carry out and evaluate a pilot program. With the help of the evaluation, the publicity around the project and above all the participant’s defence of their newfound level of freedom we try to influence the political process and make policy of the pilot project. This is the ideal.
The method has been used in a number of projects during the years. For example, ILI won a contract with the government in Slovakia. With funding from the EU, they were going to develop systems of traditional home care and special transport services. There never became any home care services instead we helped the participants in our pilot project to hire personal assistants for the money – we adapted the STIL model to circumstances in Slovakia. The project gained a lot of attention. When the new social service act was formulated – the first since the country’s split with Chechnya – many persons with disabilities received a sum each month for buying assistance services. The sum is yet too little to enable moving out of institutions or family homes – but it is a beginning. The other pilot project never resulted in special transport either but we bought 5 almost new VW-busses with portable ramps for the project budget. The busses were put into use in regular taxi services. The participants in the project got vouchers to pay for travel by taxi. Instead of supporting the service provider – as is the general rule – we chose to strengthen the purchasing power of the project participants. They were no longer cargo but customer with freedom of choice. The project was copied of several cities and today a mobility allowance is part of the social security system in Slovakia – again, a little sum but a beginning. The Bratislava project was the model for the “Taxi for all”-project in Stockholm a few years later.
Distinguishing for the ILI’s way of working is to try to influence development in as concrete a manner as possible. We believe that we can do good through promoting exchange of experiences between countries and organizations. In an EU-funded project, together with European partners, we work with phasing out institutions in southern Europe. The project documented good examples and spread these through seminars and study visits (CEIL-project). In another EU-project we asked ourselves how the ideal national policy for personal assistance should look. Together with our European partners within the Independent Living movement we drew up legislation, commented and translated this to several languages and spread it as goal for the work for personal assistance (ECEPA-project). Another EU-project aimed to put pressure on governments in a dozen EU-countries to create practical vocational training places at government authorities, agencies and companies and open these up also for youths with disabilities. We then compared the number of government organizations in a country offering practical vocational training places with the number of such places also open to our group. The results were published on our website (TVE-project).
One of our most popular projects is the Disability Ombudsman reporting service. It you are subjected to discrimination for example due to inaccessibility – a shop, an office, movie theater with steps and no elevator – then you can quickly and easily report the enterprise to HO [the Disability Ombudsman] and the municipal Building Board through our website. Discriminating enterprises end up in a searchable database and you can see when the issue has been corrected.
We have worked with several projects where we compile information presented on our website to increase freedom of choice and competition. The project “Assistanskoll” compares providers of assistance – companies, cooperatives and soon also municipalities – so persons entitled to assistance can make a choice based on the information on our website about costs and quality which generally is not clear from the companies’ advertising. The project is funded by the National Heritage Fund.
Internet is the hub for our work. Most of our projects are internet-based, which is a very cost effective mean to spread results. Our website www.independentliving.org
is well frequented with 50.000 unique visitors per month. The Independent Living Institute website appears as the first among 4 million hits when the search-phrase “Independent Living” is googled.
Many organizations, persons with disabilities and researchers use and appreciate our virtual full-text library with close to 1000 documents on Independent Living and related subjects.
The Independent Living Institute is an independent private foundation founded in the 90s by the STIL and GIL associations. Bente Skansgård, Oslo, Kalle Könkkölä, Helsingfors, Kapka Panayotova, Bulgaria and I are members of the board. Apart from a smaller contribution from STIL the activities are funded through project based means from the National Heritage Fund and the EU. Depending on number of projects we have between 5 and 10 part-time employees.
Our future is uncertain. There are plenty of ideas for new projects. The same goes for international contacts which has become a prerequisite for EU-funding. We have delightful projects which feel meaningful to work on. But, with the insecurity that project-funding brings, it is hard to find and keep competent colleagues who are willing to commit to a career at the Independent Living Institute and who are ready to take over after me.
[translation into English from text in Swedish]