Independent Living Institute (ILI) Annual Report 2003
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Independent Living Institute (ILI),
Annual Report 2003
Contents
New Projects
Continuing Projects
Projects Which Terminated During the Year
Invitations to Participate in Project Applications
Invitations to Events
Invitations to Give Lectures Which We Could Not Accept
- Publications
Interviews with ILI staff
Study visits
ILI Website - www.independentliving.org
Other Contacts
Our Office
ILI's Staff
Sponsors
The ILI Board
The year 2003 was the most eventful year in the ten year history of the Independent Living Institute, with the greatest number of projects, the largest number of employees and the best media coverage. Our international activity increased through invitations for the European Year of Persons with Disabilities and through the growth in importance of our Website.
New Projects
Fashion Freaks seeks to give wheelchair users access to:
- a number of basic clothing patterns with instructions for alterations to satisfy individual requirements,
- information about useful materials and special products as well as information about where to find them,
- a list of solutions found by wheelchair users, and a network where questions can be asked and ideas exchanged with other wheelchair users.
The project is supported by the Swedish General Inheritance Fund (Allmänna Arvsfonden) The project coordinator is Susanne Berg and other staff are Meagan Whellan and Sari Nykvist.
ECEPA (European Centre for Excellence on Personal Assistance):
Transnational partners included nine ENIL member organisations, mostly Centres for Independent Living (CIL): CIL Mainz; ULOBA, Oslo; CIL Helsinki "Threshold;" CIL Dublin; ENIL Italy, Venice; WAG Wiener Assistenzgenossenschaft (Vienna Assistance User Cooperative); CIL Thessaloniki; Independent Living Institute. The project began 2003-10-01 and will continue until 2004-09-30. The purpose of the project is to:
- put attention on the situation of assistance users in Europe,
- bring together and focus assistance users' collective expertise in order to improve the quality of life for assistance users throughout Europe, and
- improve national policies in the area of assistance as well as work on a policy for the mobility of assistance users across national boundaries within the European Union.
The project includes:
- comparisons and analyses of assistance policies in Europe including their implications for the labour market,
- an assessment of the occurrence of institutional living and forced living in the parental home for people who are dependent on practical assistance from others in their daily lives,
- documentation and dissemination of examples of good practice,
- suggestions for national laws in the area of assistance,
- distribution of the results via the partners' Websites, newsletters and events,
- building of alliances with other organisations for people with disabilities, service suppliers, and politicians,
-influence on systems at the local, national, and EU levels.
The one-year project is supported by the EU budget section B5-806.
Continuing Projects
Study and Work Abroad for All www.independentliving.org/studyworkabroad (previously Mobility for All) is developing an interactive database for:
- youth with or without disabilities looking for opportunities for study and internships abroad,
- universities that wish to have educational opportunities which are truly open to all groups, and
- corporations and interest groups who acknowledge the benefits of diversity.
Study and Work Abroad for All is a three year project funded by the Swedish General Inheritance Fund (administered by the Ministry of Social Affairs). The first year concluded in May 2003. The project coordinator is Sebastian Ferrer. Peter Anderberg, CERTEC, Lund, began working on the project in January 2003.
Radio Independent Living www.independentliving.org/radio is a pilot project for producing a number of 30 minute audio programs about such themes as civil rights, cultural identity and solidarity, de-institutionalization, self-determination, law and legal action as instruments for social change. Reports cover thoughts, projects and policies both within and outside of Sweden. This pilot project makes use of the internet's cost effectiveness which allows wide dissemination of the programs which are sound files that can be downloaded and listened to using ordinary home computers.
The project is financed by the Swedish General Inheritance Fund (administered by the Ministry of Social Affairs). The project coordinator is Susanne Berg. A number of freelance journalists are connected with the project.
CEIL (Contributing to Equality through Independent Living) www.independentliving.org/ceil/index.html. The project's aim is to spread the Independent Living approach among organizations for and of older persons and persons with disabilities in Southern Europe through the dissemination of examples of good practice. Partners include Instituto Estudios Sociales, Spain, Independent Living Institute, Sweden, Disability Now, Greece, Disabled Peoples´ International (DPI) Italy, Logroño Sin Barreras, (LSB), Spain, Confederación Española de Organizaciones de Mayores (CEOMA), Spain. The ILI's representative is Adolf Ratzka.
The project is funded by the European Union under budget line B5-803. ILI's representative is Adolf Ratzka. At the end of 2003, ILI decreased its active involvement within the partnership due to other commitments.
Projects Which Terminated During the Year
Taxi for All, www.independentliving.org/taxi, a pilot project in Stockholm County, had as its purpose to test whether a taxi-based system could offer better mobility, flexibility and self-determination than the County's special transportation system for mobility impaired people at the same costs to taxpayers. During the feasibility study (October 2000 to May 2002), the trial project (Sept. 2001 to December 2002) was prepared for including the recruitment of the project's users, the participating taxi companies, technical requirements, administration and accounting routines, contracts for the participating parties. The participants in the trial project were 50 persons who ordered taxis via three taxi switchboards. The adapted taxis drove all patrons including those who remained seated in their wheelchairs. Costs were covered by the County and participants paid the same fee as they would for the County's special transportation.
The project's findings were presented at a well-attended evaluation seminar in March. ILI received media coverage and new friends. The project continued in the form of the regular service "Rullstolstaxi” (wheelchair taxi). Despite months of intensive lobbying and opinion building efforts from both ILI and other organizations, extensive media coverage and the participants' persistent protests, the County government decided to exclude Rullstoltaxi from their high cost protection program and instituted a fee, 50% of the amount on the taxi meter, beginning in October 2003. Thus, this alternative became too expensive for users who again were referred to the County's special transportation system as the only alternative.
The project was funded by the Stockholm County Special Transportation Board (Färdtjänst) and the Transportation Research Committee (Kommunikationsforsknings-beredningen). The project coordinator for the preliminary study was Bengt-Olof Johansson.
KARMA (Knowledge Augmented Reality Management Assistance) www.karma-project.net/body.html developed a marketable system consisting of hardware, software and an interface with the healthcare system that assists families with brain-injured children in avoiding hospitalisation. The partners include Air Liquide Sanità, Italy, a major international medical supplier, QUBIsoft, an Italian software developer, Tosinvest, a brain injuries clinic in Rome, Italy, Brain Injured Children, a parents' organization near Rome, Italy, France Télècom's department of Télèmedecine in Grenoble, France, the University Hospital Université Joseph Fourier, Grenoble, France and the Independent Living Institute, Sweden.
The project was presented at a number of international events and terminated at the end of 2003.
The project was funded by the European Union Fifth Framework program. ILI was represented by Adolf Ratzka.
Invitations to Participate in Project Applications
EU project application "Euroidea". Lead partner Reggione di Taranto, Italy. ILI declined.
EU project application with the Association Montana Motilor, Romania. ILI declined.
EU project application "e-Learning" within MINERVA. Lead partner Pragma, Greece. ILI declined.
EU project application within the 6th Framework "Telecare" with Spanish partners.
EU project application within the "Leornado-program". Lead partner CERTH, Thessaloniki, Greece.
Invitations to Events
February: Magdeburg, Germany. National opening conference for the European Year of Persons with Disabilities. ILI participated with a plenary presentation about the Swedish Personal Assistance Act.
www.independentliving.org/docs6/ratzka200302.html
March: Southampton, UK. ENIL Board meeting and seminar about direct payments, organized by ENIL, the European Network for Independent Living. ILI participated with a lecture about services and quality.
April: Tenerife, Spain. The European Congress on Independent Living. ILI participated with a lecture about the preconditions for deinstitutionalization. www.independentliving.org/docs6/ratzka200304.html
May: Bern, Switzerland. The Swiss Congress der Schweizerischen Vereinigung für Sozialpolitik about personal assistance in practice". ILI participated with a plenary lecture about the Swedish assistance reform.
www.independentliving.org/docs6/berg20030520.html
August: Dublin, Ireland. The Congress Association for the Advancement of Assistive Technology in Europe. ILI gave a plenary lecture, "From patient to Customer". www.independentliving.org/docs6/ratzka200308b.html
August: Dublin, Ireland. Seminar on direct payments, organized by the Centre for Independent Living, Dublin. ILI participated with a lecture about the form for direct payments and recipients' quality of life.
October: Düsseldorf, Germany. REHA-trade fair panel discussion about personal assistance, organized by Selbstbestimmt Leben e.V. (Independent Living Germany)
October: Ljubljana, Slovenia. International Conference on Independent Living, organized by the Independent Living organization, YHD, Slovenia. ILI participated with a presentation about the philosophy of Independent Living and its implications for the work of disabled persons' organizations.
October: Graz, Austria. A lecture series during the European Year of Persons with Disabilities, organized by Selbstbestimmt Leben Steiermark. ILI participated with a lecture about the Swedish Personal Assistance Act.
December: Vienna, Austria. A seminar for government representatives at the national, state and city level, organized by WAG, Wiener Assistenzgenossenschaft (assistance user cooperative). ILI participated with a lecture about the form of cash benefits for personal assistance.
December: Linz, Austria. European Congress "Behindertsein in Europa". ILI participated with a plenary lecture about self-determined mobility in city traffic for people with extensive disabilities. www.independentliving.org/docs6/ratzka200311.html
December: Rome, Italy. Official closing conference for the European Year of Persons with Disabilities, organized by the Italian government. ILI participated as an observer.
Invitations to Give Lectures Which We Could Not Accept
September: Mecklenburg, Germany. The National Conference for the European Year of Persons with Disabilities with the theme, "The Baltic Sea – a sea without barriers", organized by Allgemeiner Behindertenverband in Mecklenburg - Vorpommern e.V. "Für Selbstbestimmung und Würde".
November: Berlin, Germany. The National Conference for the European Year of Persons with Disabilities with the theme "Assistanz und Anwaltschaft", organized by Berufsverband der Heilpädagogen.
November: Vienna, Austria. Film première for "Blick Bestimmung. Bilder Selbstbestimmter Leben" arranged by the national partnership within the EQUAL program.
October: Berlin, Germany. The National Conference for the European Year of Persons with Disabilities with the theme "Nothing about us without us – participation of persons with disabilities in political and social life." Organized by Friedrich-Ebert-Stiftung.
A chapter entitled "Independent Living in Sweden", in the book by Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales." (The Independent Living Movement: International Experiences) Fundación Luois Vives, Madrid 2003. www.independentliving.org/docs6/alonso2003.pdf
One issue of ILI's newsletter was published, that focused on the principle of direct payments www.independentliving.org/newsletter/10-03.html
The weekly newspaper "La Vie", Paris; "Jur§Ass", a German periodical included an article about the Swedish social service system. The German daily and weekly newspapers "Die Süddeutsche Zeitung", München, "Die Zeit", Hamburg, "Die Frankfurter Rundschau", Frankfurt ran articles about Adolf Ratzka.
ZDF, a German TV channel, aired a portrait of Adolf Ratzka about assistance in theory and practice; the TV program "Selbstbestimmt", MDR, Magdeburg, Germany; "Freak Radio", Österreichischer Rundfunk, Vienna for two programs about the European Year of Persons with Disabilities and personal assistance: Österreichischer Rundfunk Graz for a program about welfare, equality, and personal assistance; Slovenian TV in Ljubljana about the politics of disability and assistance.
Research Director, New Local Government Network, London for a study on the choice in traditional public services. Research Director of Thalidomide Trust, UK, about the principle of direct payments.
May: Dr. Jane Campbell, chairperson, Social Care Institute for Excellence, London, UK
September: Staff from the Centre for Independent Living HANDS Setagaya in Tokyo, Japan who had received a stipendium from the Duskin Study Abroad Leaders Program for the Disabled, Japan.
October: Nine representatives from municipal and county representatives of the disabled persons' movement in Japan.
ILI Website - www.independentliving.org
During the year our Website, www.independentliving.org, continued to be the top listing for the search term "Independent Living" at www.google.com (amongst 1,190,000 sites), at www.yahoo.com (898,000), at www.altavista.com (230,000) and at www.lycos.com (1,045,000). According to Lycos, 6,034 Websites were had links to our Website. During the year there were approximately 9,000 visits per week to our site. The almost 1,900 pages makes our site one of the world's largest, virtual, full-text libraries for issues of concern to persons with disabilities.
Because of our exposure on the Worldwide Web, and particularly due to our library, we receive several dozen e-mails or telephone calls per month from people worldwide. As we have no funds budgeted for this activity, we only manage to reply to a number of them.
Many contacts have to do with information, resources, research results, addresses, etc. in a variety of categories. For example, we were contacted by the Institut National de Recherche sur les Transports et leur Sécurité (INRETS), Bron, France, about policies for public transport and disabilities from the sociological and political science point of view; by a French/Norwegian film team who sought our collaboration with regard to the shooting a film for the European Year of Persons with Disabilities; by a researcher in Australia for assistance locating literature on the theme of "Independent Living, social action leading to social change"; by an Israeli project for help with formulation of a research project about dependence on assistance by others and time management.
We were invited to write articles for publications, for example, an article about the Swedish assistance reform for the German periodical " Sonderpädagogische Förderung in NRW" as well as an article for a coalition of organizations in Berlin about the optimal combination of adapted taxis and accessible public transport systems.
We often receive requests to comment on project plans, research, manuscripts, etc. We contribute to the extent in which we are able.
We receive a dozen or so letters every month seeking information about assistive technology, housing and service possibilities for persons who need assistance, and about financial support for individuals. These letters come almost exclusively from foreign visitors to our Website, who most often believe that we are an American organization.
We are asked to help with contacts that could lead to internships. We are unable to help in these cases.
A growing number of letters come from organizations in developing countries who wish to collaborate on Independent Living projects. Recently, for example, we were contacted by the Regional Development Office for Africa of the Disabled Peoples' International (DPI), Bamako, Mali, who want to establish an Independent Living Centre in West Africa in conjunction with the African Decade of Disabled Persons. As we have not budgeted resources for such projects, our contributions are limited to commenting on project plans and providing addresses, information and other resources.
Our office moved to a new location with three work places near The Stockholm Globe. The accounting which was formerly handled by an accounting company was taken over and managed internally. A name change to Independent Living Institute, abbreviated as ILI, was instituted in May along with work on profiling the Institute through a new logo and layout work on the Website.
Peter Anderberg, PhD candidate, CERTEC, Lund, has been assisting with the Study & Work Abroad for All project since January 2003.
Susanne Berg continued to work part-time as co-ordinator for Radio Independent Living and Fashion Freaks.
Sebastian Ferrer continued to work as project co-ordinator for the Study and Work Abroad for All project. He also periodically carried out administrative tasks.
Miles Goldstick continued to be responsible for technical aspects of the Website.
Susanna Laurin was hired as the administrator/public relations person in February. She quit her position in September when she was offered the position of CEO at Funka.Nu. Peter Svahlstedt, with a background in the IRIS group, succeeded her.
Sari Nykvist and Meagan Whellans worked with the Fashion Freaks project.
Adolf Ratzka continued to serve as director on a half-time basis.
Sponsors
We would like to thank STIL, the Stockholm Cooperative for Independent Living, and GIL, the Gothenburg Cooperative for Independent Living, who have been supporting the Institute's activities for a three year period. The funds are used to maintain, expand and improve the Website, to finance minor projects which could not otherwise be funded and as national co-financing for European Union projects.
We would like to thank Cable & Wireless Pi.se for web hosting and associated services for our Website during the year.
Our most important financial contributor is the Swedish General Inheritance Fund (Allmänna Arvsfonden) which finances Study and Work Abroad for All, Radio Independent Living, Fashion Freaks and part of ECEPA.
The ILI Board
The ILI Board remained unchanged during the year and is made up of Bente Skansgård, Norway; Phil Mason, UK; Rolf Bergfors, Sweden and Adolf Ratzka, Sweden.
The Annual Meeting was held on February 22 via e-mail.
Independent Living Institute Board
14 April 2004
Bente Skansgård Philip Mason Rolf Bergfors Adolf Ratzka
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