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Independent Living Institute (ILI),
Annual Report 2001

Contents

New projects
Continuing projects
Website statistics
Closed projects
Approved grant applications
Unsuccessful grant applications
Invitations to serve as resource person at events
Invitations we could not follow
Fellowships
Other professional contacts
Study visits and professional contacts abroad
Feedback
Sponsors
The Institute's board
The Institute's staff

New projects

KARMA 2, Knowledge and Augmented Reality Management Assistance, is a European Union funded project under the Fifth Framework with project number IST - 32320. The project is to develop a marketable system including hardware, software and interface with the European healthcare system that would assist families with brain-injured children to avoid hospitalization.

Partners are 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; France Télécom's department of Telemedicine in Grenoble, France; the university hospital Université Joseph Fourier, Grenoble, France; the Institute for Independent Living.

"Mobility: a right for all", project number SE-37, is funded under the European Union's EQUAL program. An application submitted in August by the national partners International Program Office, Stockholm, NGO Urkraft, Skellefteå and the Institute was approved on November 15. The partners are to submit a final proposal by May 2, 2002. The project is to reduce disabled participants' practical and institutional barriers to exchange programs for studies and internships abroad. The Institute's part will consist of the development of an interactive database with information, on the one hand, about opportunities for studies and internships including the hosts' possibilities to accept persons with disabilities and, on the other hand, about local organizations of disabled persons which can refer to or provide support services for persons with extensive disabilities such as adapted housing, transportation and personal assistance.

CEIL, Contributing to Equality through Independent Living, was approved in October under the European Union's budget line B5-803 (establishing transnational actions for the exchange of information and good practice). The partners IES, Instituto Estudios Sociales, Spain and the Institute are to submit a detailed proposal by March 30, 2002 for the project that would spread the Independent Living approach among organizations for and of older persons and persons with disabilities in Southern Europe.

Continuing projects

Thanks to our sponsors the Institute has been able to continue maintaining and enlarging its website with more library documents and useful interactive services.

Website statistics

During 2001 our website has become the leading site for search term "Independent Living" in www.google.com among 324,000 other sites which contain the term "Independent Living". During the year we have had an average of 7,000 "user sessions" per week. Over 600 documents make our site one of the world's largest virtual full-text libraries on disability issues.

Closed projects

The final report for project AccessGuide was submitted to the National Consumers Board in September. The prototype's test during June-August was inconclusive. We are presently investigating other potential applications for the database program.

On the basis of the first part of the project "Taxi for all", the feasibility study, the politically appointed board of the Stockholm County paratransit system (Stockholms läns landstings färdtjänstnämnd) decided in May to finance the pilot project for accessible mainstream taxi during the period September 18, 2001 to December 31, 2002. The project will continue under the auspices of the paratransit system. In the project, about 100 persons entitled to use the paratransit's busses can call for wheelchair accessible taxi cabs which are used in regular taxi traffic. The desired outcomes are users' improved flexibility and mobility. The project will be evaluated by two independent research teams under the auspices of the Institute.

Approved grant applications

The Swedish General Inheritance Fund (Allmänna Arvsfonden) approved the Institute's application for funding of its planned project Radio Independent Living, an archive of sound files with streaming audio on the Institute's website with programs of interest to the disability community.

Unsuccessful grant applications

Project "Peer counselling as instrument for Independent Living" was not approved by the European Union under budget line B3-4105 (preparatory actions to combat and prevent social exclusion). Transnational partners were Dodecanese Association of People with disabilities, Greece; PRISMA Center for Development Studies, Greece; Capodarco, Italy and the Institute.

An application for a mobility project for students with a disability within the European Union's Leonardo da Vinci program was submitted by the Slovenian Association of Disabled Students, Ljublijana, Slovenia and the Institute but did not receive support.

An application for funding of a project for empowerment, vocational rehabilitation and integration of persons with disabilities by the Hellenic Society for the Protection and Rehabilitation of Disabled Children (ELEPAP), Greece and the Institute was not approved by the European Union.

Invitations to serve as resource person at events

On April 25-26 the Institute's director was invited to facilitata a workshop on accessibility at the conference organized by the Swedish Ministry of Health and Welfare in Linköping in connection with Sweden's European Union Presidency.

On September 25-29 the director took part in the kick-off meeting for project KARMA 2 in Milano.

On October 4-5 the director gave two lectures about the project "Taxi for all" at the annual assistive devices exhibition Hjultorget in Stockholm.

On December 1 the director lectured about the project "Taxi for all" at a regional meeting of the organization Unga rörelsehindrade (Young physically disabled) in Gothenburg.

On December 7 the director lectured about Independent Living principles and direct payments as tools for self-determination at a conference of the Association of the Neurologically Handicapped (NHR) in Stockholm.

Invitations we could not follow

On January 15 the director was invited as keynote speaker at the Fifth Congress of SATH, Society for Accessible Travel & Hospitality, in Ft. Lauderdale, Florida.

On February 1 the director was invited as panelist at the conference organized by Selbstbestimmtes Leben von Menschen mit Behinderung e.V. Würzburg as part of the German nationwide Campaign for Personal Assistance coordinated by the German Independent Living movement ISL e.V.

On March 7-9 the director was invited as speaker at the 8th International Conference on Home Mechanical Ventilation in Lyon, Frankrike. Organizers were A.F.M. (Association Française contre les Myopathies and I.V.U.N. (International Ventilator Users Network, St. Louis, USA.

On October 10-14 the Institute's director was invited as speaker and panelist at the conference on parenting with a disability in Oakland, USA organized by Through the Looking Glass, Berkeley, USA. The meeting was cancelled due to the events of September 11. In connection with the conference the director would have had study visits and meetings in the San Francisco and Los Angeles area, among others an interview by the Oral History Program about the beginnings of the Independent Living movement.

On November 26-28 the Institute's director was invited to speak at meetings on a European access guide in Athens and Thessaloniki, Greece organized by the National School of Public Health, Athens and the Greek Ministry of Health and Welfare.

Fellowships

The Institute's director was awarded a CIRRIE Fellowship (Center for International Rehabilitation Research Information & Exchange under a grant from NIDRR, National Institute on Disability and Rehabiltation Research), University of Buffalo, State University of New York, which would have allowed him to follow an invitation to the conference on parenting with a disability organized by Through the Loking Glass, Berkeley and other meetings in the San Francisco and Los Angeles area. The events of September 11 caused the conference organizers to postpone the event.

Other professional contacts

On April 28 after the European Union conference in Linköping the Institute invited a number of international and Swedish accessibility experts to a meeting, among them Prof Sven Thiberg, Elena Siré, Royal Institute of Technology, Lars Lindberg, Tillgänglighetscentrum; Jorge Falcato, City of Lisbon, Portugal; Lex Frieden, President, Rehabilitation International; Judy Brewer, World Wide Web Consortium (W3C) Web Accessibility Initiative (WAI); Manuel Lobato, COCEMFE, Spain; Gerasimos Polis, Ministry of Health and Welfare, Athens, Greece; Joe Manser, Schweizerische Fachstelle für behindertengerechtes Bauen, Zürich, Switzerland.

May 14 interview by a student of Social Anthropology.

May 16 Debbie Kaplan, Director, World Institute on Disability.

July 12 interview by a doctoral student from the University of Hildesheim, Germany about user-run personal assistance and direct payments.

September 14 Prof. Hiroshi Katoda, Gaikun University, Japan.

Study visits and professional contacts abroad

May 5 Bente Skansgård, Oslo

Feedback

We receive many comments about the Institute's website. Here's an example:

"Just wanted to tell you that we think your website is excellent!! The disability community in Kansas (USA) is writing a federal grant for self-directed personal attendant services. We would like to reference your website and propose that attendants in Kansas could enter their information in your directory and that consumers from Kansas could use your site to locate attendants around the world.

Would that be alright with you? If so, could you send me an e-mail, and if you can also a letter, saying that you would be willing to work with us on this effort? Would you need some funds to cover the collaboration efforts? If so, if you would $5,000 cover your costs?

If you answer by post, please send the letter to: Sara Sack, Ph.D., Kansas University Affiliated Program-Parsons, 2601 Gabriel, Parsons, Kansas, 67357, USA".

Sponsors

We thank Cable & Wireless Pi.se for web hotel och similar services for our website during 2001.

We thank STIL, Stockholm Cooperative for Independent Liing, and GIL, Gothenburg Cooperative for Independent Living, which support the Institute's activities for a three year period. The funds will be used for maintaining and improving the Institute's website, for financing minor projects which otherwise could not have been funded and for co-financing of European Union projects.

The Institute's board

The Institute's board was unchanged during 2001 consisting of Bente Skansgård, Norway; Phil Mason, UK; Rolf Bergfors, Sweden and Adolf Ratzka, Sweden. The board had its annual meeting on May 10 by email.

The Institute's staff

Bengt-Olof Johansson, as the Institute's consultant, led the feasibility study in the project "Taxi for all" which was the basis of the paratransit board's decision to start the pilot project.

Miles Goldstick was responsible for the technical aspects of the website also during 2001.

Cicci Hultqvist started as administrator during spring under the guidance of her predecessor Terry Skehan but left in December for work elsewhere. Susan Svinghammar took her position.

Our good friend Dr. Steven E. Brown, historian and poet living in New Mexico, USA, former director of an Independent Living center in Oklahoma, former researcher at the World Institute on Disability och co-founder and director of the Institute on Disability Culture, has been working as web editor via e-post och internet since August.

Our old friend Sebastian Ferrer, accountant and organizational consultant with many years experience in international development work in Nicaragua, now living in Argentina, started to work for the Institute, via email and internet, in fall. His current tasks are to compile links and other useful information for our website.

Björn Thorén coordinated and summarized the testing of the Institute's AccessGuide prototype.

Adolf D Ratzka, Ph D
Verksamhetsledare
29 februari 2002

Independent Living Institute Board

Adolf Ratzka, Stockholm, Sweden
Philipp Mason, Hampshire, UK
Bente Skansgård, Oslo, Norway
Rolf Bergfors, Göteborg, Sweden