Independent Living Institute (ILI) Annual Report 2004

Internet publication URL: www.independentliving.org/docs1/ilanrp2004.html

In English: 2009, 2008, 2007, 2006, 2005, 2004, 2003, 2002, 2001, 2000, 1999, 1998, 1997, 1996

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Independent Living Institute (ILI),
Annual Report 2004

2004 was a busy year. We ran several major projects and enjoyed our website's growing importance as an international resource in the area of disability.

New Projects

The project, "Assistanssajten ("Assistance site") www.independentliving.org/aportalsv.html, in Swedish only, is intended to strengthen the position of consumers of personal assistance in the market for assistance services that has developed since the Swedish Personal Assistance Act (LASS) took effect 10 years ago. The Internet-based service will build on the peer support principle and will utilize the Web's interactive possibilities. We hope to sharpen competition among service providers and thereby increase quality of the services by providing comparative consumer information as well as advice and support to individual users. Also, the applications on the Website are aimed at helping individual assistance users take over employer responsibility for their assistants. The project is being carried out in co-operation with the company Funka.nu. The first phase, funded by the Swedish Consumer Agency (Konsumentverket), consists of a preliminary study and construction of a test version.

Continuing Projects

Study and Work Abroad for All, www.independentliving.org/studyworkabroad, is constructing an interactive database for:

- youth with or without disabilities interested in study and internships abroad,

- universities wishing to be open to all groups,

- interest groups who acknowledge the benefits of diversity and want to make available internships for, amongst others, youth with disabilities.

The project is funded by the Swedish General Inheritance Fund (administered by the Ministry of Social Affairs) and continues until the end of 2005.

Fashion Freaks, www.independentliving.org/om-ffreaks.html, seeks to give wheelchair users access to:

- basic clothing patterns with instructions for size alteration for better individual fit,

- information about useful materials and special products as well as information about where to find them,

- a tips bank where wheelchair users list their solutions, and a network where questions can be asked and ideas shared with other wheelchair users.

The project is supported by the Swedish General Inheritance Fund. The project coordinator is Susanne Berg. Meagan Whellan and Sari Nykvist are also involved.

Radio Independent Living, www.independentliving.org/radio, is a pilot project for producing a number of 30 minute audio programs. Major themes include civil rights, cultural identity and solidarity. Themes covered include de-institutionalization, self-determination, civil rights, the law and legal action as instruments for social change, cultural identity and solidarity. Reports cover thoughts, projects and policies both within and outside of Sweden. This pilot project makes use of the Internet's cost effectiveness of 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 Susanne Berg. A number of freelance journalists work with the project. See the list of publications below for the programs produced during the year.

The Disability Ombudsman Reporting Service, www.independentliving.org/ho, (Swedish only) has been run by us for a few years. It facilitates electronic reporting of instances of discrimination to the Office of the Disability Ombudsman and Local Building Authorities, and archives the reports in a searchable, national database easily accessed by search engines. As an example, someone searching for "Forex Uppsala" for some other purpose will be informed that the Uppsala office, due to its inaccessible premises, discriminates against customers with disabilities. In November Hans Filipsson, the man behind the Swedish annual March for Accessibility (Marschen för tillgänglighet), was contracted to promote the Disability Ombudsman application as one of the tools for an accessible society.

The Personal Assistant Referral service, www.independentliving.org/assex/index.html, helps assistance users traveling abroad to find assistants.

The Vacation Home Exchange service, www.independentliving.org/vacaswap.html, supports travel abroad by people with extensive disabilities, by listing accessible homes that can be swapped for vacation purposes.

Projects Terminated During the Year

CEIL (Contributing to Equality through Independent Living), www.independentliving.org/ceil/index.html. The project's aim was 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 included Instituto Estudios Sociales, Spain; Independent Living Institute, Sweden; Disability Now, Greece; Disabled Peoples' International (DPI) Italy; AUSER, Italy; Logroño Sin Barreras, (LSB), Spain; and Confederación Española de Organizaciones de Mayores (CEOMA), Spain. ILI was represented by Adolf Ratzka.

The project was funded by the European Union under budget section B5-803 and lasted two years. Due to ILI's extensive workload, involvement in the partnership was reduced in the beginning of the year.

ECEPA (European Center for Excellence on Personal Assistance), www.exepa.org/ was a project run by nine ENIL member organizations, mostly Centers for Independent Living (CIL): CIL Mainz; ULOBA, Oslo; CIL Helsinki Threshold; CIL Dublin; ENIL Italia, Venedig; WAG Wiener Assistenzgenossenschaft (Vienna Assistance Users Cooperative); CIL Thessaloniki; and The Independent Living Institute. The project was supported by the EU budget section B5-806. The one-year project ended September 2004. Its purpose was to:

- focus 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 at the level of the European Union.

Results of the project include the document, Model National Personal Assistance Policy, which was coordinated and edited by ILI, and has been translated into a number of European languages and is being spread among assistance users, their organizations, politicians, civil servants, and researchers. See www.independentliving.org/docs6/ratzka200410a.html

The document was chosen by IDDC (International Disability and Development Consortium) and Handicap International to be included on a globally distributed CD to those concerned with and involved in the United Nations work on the Convention on Disability (www.un.org/esa/socdev/enable/rights/ahc5.htm).

Invitations to Participate in Project Applications

ILI was invited to be a partner in the following project applications to the EU Commission under the 6th Framework Programme for Research, Technological Development and Demonstration:

- Project title "European Quality Assurance Instrument for Social Service delivery for Persons with Disabilities: Principles and Methods for Participation Orientated Quality Assurance Equality." Other partners were Tübingen University (Germany), Dortmund University (Germany), Uppsala University (Sweden), University of Gothenburg (Sweden), St. Galler Wirtschafts-Consulting AG (Switzerland), Disability Now (Greece), University of Stirling (Scotland, UK), and Kaunas University of Medicine (Lithuania). The project was not funded.

- Project title "Focused Reach Effort Enforcement through Independent Living," with lead partner Apeirons, Riga, Latvia. The project was not funded.

- Project title "Rethinking Care Guidelines for Home Activities Participation and Autonomy," with lead partner DPI Italy. Other partners wereInteruniversity Centre for Sustainable Development, University of Rome "La Sapienza," Autonomy Centre of Rome (FISH), CND - Italian National Council on Disability, Vaccari Independent Living Center, and Municipality of Rome, Office on Disability. The project was not funded.

Invitations to join project applications which ILI did not accept included:

- Lead partner: the organization Handicap & Libertés, Puteaux, France. Application to the EU Commission within their program on combatting discrimination. The project was to support building networks between national and international disability organizations.

- Lead partner: the organizations ATLHa, Associazione Tempo Libero Handicappati and Futura Europa. Application to The EU Commission within Joint Actions (Action 4 of Youth Programme). The project was to support integration of youth with disabilities.

- Lead partner: the organization CIL Mainz, Germany. Application to The EU Commission within The Joint Actions (Action 4 of Youth Programme). The project was to support integration of youth with disabilities. Other partners were IES Spain, Bizeps Vienna, and CIL Meran.

Invitations to Events

April 17: at the Swedish Disability History Society's conference, Susanne Berg presented the opening address at a seminar on how people with disabilities and their living situations are reflected in museums and exhibitions, as well as the situation of small museums in the disability field.

June 23 - 28: Adolf Ratzka lectured at symposia on Independent Living and ventilator users organized by the Japanese Ventilator Users Network in Sapporo, Tokyo (keynote address) and Osaka. See www.independentliving.org/docs6/ratzka20040623.html

June 24: Adolf Ratzka lectured on a model personal assistance law at a national seminar, organized by the Japanese Council of Independent Living Centers in Tokyo as a step in the movement's work towards a national policy, See www.independentliving.org/docs6/ratzka200410a.html

August 15: ILI supported the March for Accessibility in Stockholm, and provided one of the speakers addressing the rally.

September 2-5: Adolf Ratzka participated at the final international conference of ECEPA, European Center for Excellence in Personal Assistance (see "Projects Terminated During the Year") in Mainz, Germany.

September 24: Susanne Berg was panel member at the Nordic Cooperation on Disability seminar at The Book and Library Trade Fair. There was a discussion with Kristian Berg (then head of the Museum of History) about "Democratic space: the new tasks of museums."

October 6: Susanne Berg took part as jury member in "Design for All Awards," a co-operation between The Netherlands and Sweden (The Swedish Handicap Institute /Swedish Trade Council and the Dutch Ministry of Health, Welfare and Sport). The awards ceremony took place in The Hague. See www.minvws.nl/en/speeches/dgb/presentation-of-the-design-for-all-awards-2004.asp

October 21: Adolf Ratzka was a panel member at the national conference on Independent Living organized by Instituto Guttman in co-operation with Foro Vida Independiente in Barcelona, Spain.

October 22-23: Adolf Ratzka lectured at the conference on Independent Living, organized by the Association of Paraplegic and Handicapped from Lleida, ASPID at the exhibition ExpoForum MINUSVAL 2004 in Lerida, Spain.

28-29 November: Adolf Ratzka lectured at the national conference on personal assistance, organized by the IL organization Threshold in Helsinki, Finland.

Participation in Reference Groups

ILI was represented in the Swedish Road Administration Region Stockholm reference group for its work on co-ordination of initiatives for adapting public transit by the year 2010.

Adolf Ratzka was conferred as a Distinguished Fellow of University of Hawaii at Manoa and became a member of the editorial panel for "The Review of Disability Studies, An International Journal", www.rds.hawaii.edu/

 

Unaccepted Invitations to Lecture

March 22-24: III Congress of IBerdiscap on Technnical Aids, an international conference on research on technical aids, in San José, Costa Rica.

April 29: expert conference organized by the European Foundation Center, Disability Interest Group, in Brussels.

April 27: conference on personal assistance organized by Autonomia, in Brussels.

May 7: conference on anti-discrimination legislation and national economics organized by the City of Innsbruck, Austria.

October 20: conference on assistance users' cooperatives, organized by Zentralverband deutscher Konsumgenossenschaften (National Council of Consumer Cooperatives) in Hamburg.

English Language Publications

(For Swedish language publications see the Swedish version of this Annual Report.)

One issue of ILI's newsletter was published. It dealt with Independent Living developments around the world, see: www.independentliving.org/newsletter/ili200406.html

Ratzka, Adolf (ed.). 2004-10. "Model National Personal Assistance Policy." (PDF, 45 KB.) A project of the European Center for Excellence in Personal Assistance (ECEPA). Internet publication URLs: www.independentliving.org/docs6/ratzka200410a.html and www.independentliving.org/docs6/ratzka200410a.pdf

Ratzka, Adolf. 2004-06-23. "The Swedish Personal Assistance Act of 1994." Keynote address, Japanese Ventilator Users' Network Symposium, Tokyo, 2004-06-23. Internet publication URL: www.independentliving.org/docs6/ratzka20040623.html. Japanese version (PDF, 209 KB), Internet publication URL: www.independentliving.org/docs6/ratzka20040623-japanese.pdf.

Reprint on the Disability World Website (www.disabilityworld.org/04-05_04/access/proposal.shtml): Ratzka, Adolf. 2003-08. "From patient to customer: Direct payments for assistive technology for disabled people's self-determination." Internet publication URL: http://www.independentliving.org/docs6/ratzka200308b.html.

The above document was chosen by IDDC (International Disability and Development Consortium) and Handicap International to be included on a globally distributed CD to those concerned with and involved in the United Nations work on the Convention on Disability www.un.org/esa/socdev/enable/rights/ahc5.htm Another document chosen from ILI's virtual library is "Tools for Power," www.independentliving.org/toolsforpower/tools1.html

Parts of our audio documentation of ENIL Strasbourg Freedom Drive in 2003 [see www.independentliving.org/radio/bollard200309.rm (download), www.independentliving.org/radio/bollard200309.ram (listen on-line)] was included with permission from ILI, in a radio program on the civil rights movement for disabled people in different parts of the world and it's progress. The program was prepared by The Center for Health Policy and Research, University of Massachusetts Medical School for use, amongst other things, in training for medical doctors.

Interviews with ILI Staff

May 5: for a radio program about the living conditions of disabled people in Europa in Bayerischer Rundfunk Radiowelt 1 (Bavarian Broadcast System, Munich, Germany) on the occasion of the IL movement's European Day of Protest May 5.

May: for ULOBA's (Norway's assistance users cooperative) exhibition "Selvstendifg liv 2004" ("Independent Life 2004" - in Norwegian only).

June: for the film "Mythen om Sverige" ("The Myth About Sweden" - in Swedish only) about the origins of the Swedish Personal Assistance Act of 1994 (LASS), by Johan Lundeqvist, GIL, www.gil.org/start.asp?sida=2917

June 23-24: for the Japanese TV channel NHK in Tokyo, the Japanese daily newspaper Asahi Shinbu and for the publishing company Gendai Shokans magazine on social politics.

August: for the film "Selbstbestimmt Leben i USA, Schweden und Deutschland" ("Independent Living in the US, Sweden and German") by Tula Roy for Catholic Pastoral Work, Zurich, Switzerland www.behindertenseelsorge.ch/film.htm

August 25: with the Netherlands Institute for Care and Welfare regarding their task of giving recommendations to the government of the Netherlands about solutions for people that due to age or disability need assistance in the activities of daily living.

November: for the radio report "La Suède, une société accessible à tous" ("Sweden, a society accessible to all" - in French only) on Radio France www.radiofrance.fr/reportage/dossier/?rid=55000137&arch=1

November: for a report on the situation of disabled people in Sweden, in the Polish daily newspaper Gazeta Wyborcza.

December, for the special issue "Forandring til det bedre! - Kvalitetens veje og vildveje på handicapområdet", ("Change for the better: quality in the area of disability," in Danish), published by Videnscenter for Bevægelseshandicap (Danish Information Centre for Physical Disability ) Århus, Denmark www.vfb.dk/files/Forandring%20til%20det%20bedre.pdf

Visitors to ILI

April 17-19: Paritätische Akademie, Berlin with 20 experts from Landesverbände och Gesamtverbandes des Paritätischen Wohlfahrtsverbands (an association of private and government organizations in the health care sector), as well as representatives of the German Ministry of Social Affairs for the purpose of gathering information for international comparisons for new German legislation in the area of cash payments for personal assistance.

April 20: the organization Apeiron, Riga, Latvia for the purpose of studying personal assistance solutions and discussing closer co-operation on an application for funding to the EU.

May 7: Elaine Ostroff, Adaptive Environments, Boston, USA.

October 13-15: under the auspices of the Swedish Ministry of Foreign Affairs, ILI was visited by Piotr Pawlowski who is Editor-in-chief for the magazine Integracija, leading debater in Poland and the host of a disability oriented TV program on channel 3 in Poland; as well as two journalists from the largest Polish daily newspaper, Rzeczpopolita och Gazeta Wyborcza.

November 4: Shinobu Takahashi, JAICA and scholarship holder from the Japanese Duskin Ainowa Foundation.

November 23: Joke Visser, Joke Visser Management Support, Nijmege, Netherlands for the purpose of consulting ILI on design of a study on assistance users' needs for advice and support, to be carried out by PerSaldo, the Dutch association of personal assistance users.

The ILI Website, www.independentliving.org

During the year our Website, www.independentliving.org, continued to be the first listing for the search term "Independent Living" at www.google.com (amongst 1,190,000 sites). We get frequent feedback testifying to the important international role of our virtual full-text library.

Other Contacts

We received more requests via e-mail and over the phone for information, contacts, and help in planning projects than we could handle with our current resources. Though this part of our activity is very important, we have no funds to finance it.

ILI Staff

Peter Anderberg worked part-time during half of the year on the Study and Work Abroad for All project and was on leave the rest of the year to finish his dissertation at CERTEC. Susanne Berg continued part-time as coordinator for Radio Independent Living and Fashion Freaks. Philip Day, who has an extensive background as a systems developer, became the project manager, on a part-time basis, for the Study and Work Abroad for All project. Philip took over from Sebastian Ferrer, who became ILI's financial administrator, though continued working on the project. Miles Goldstick continued part-time to be responsible for technical aspects of the Website. Sari Nykvist worked part-time on the Fashion Freaks project.Adolf Ratzka continued to serve as director on a half-time basis. Anna Rentzsch and Sybille Neveling worked part-time on the Radio Independent Living project. Peter Svahlstedt, who had responsibility for ILI's administration, left the Institute.

Sponsors

We would like to thank STIL, The Stockholm's Cooperative for Independent Living for their financial contributions to ILI's activities. The support was used for maintenance, upgrading and improvement of the Website, for covering the costs of smaller projects that could not be financed in other ways, and as national co-financing of EU projects.

Special thanks to our Internet service provider Cable & Wireless Pi.se for providing our Web and related Internet services throughout the year.

Our primary funder was The Swedish Inheritance Fund (Allmänna Arvsfonden), that presently funds the projects Study and Work Abroad for All, Radio Independent Living and Fashion Freaks.

Online donations and membership in Swedish Foundation for Fundraising Control

ILI qualified for a bank account number starting with the digits 90. These account numbers are reserved by the Swedish Foundation for Fundraising Control (SFI) for NGOs that meet certain standards in their fundraising methods and in the use of funds donated by the public.

Via the ILI Website, it is now possible to contribute financially to our activities with major credit cards and the Internet pay service PayPal.

ILI Board

At the AGM on February 12 the Board decided to add the following three persons as substitutes for the ordinary Board members:

Anne-Christine Celander, Helsingborg, ordförande, Helsingborgkooperativet för Independent Living, HIL
Bengt Elmén, Stockholm, tidigare verksamhetsledare för STIL
Ulla Brandén, Östersund, aktivist med många nationella uppdrag

The Annual General Meeting was held on February 12 by email.

The Board of the Independent Living Institute
October 1, 2005

Bente Skansgård
Philip Mason
Rolf Bergfors
Adolf Ratzka

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