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Independent Living Institute (ILI),
Annual Report 2000

Contents

The Institute's own projects
Participation as partner in other organizations' projects
Invited presentations
Invitations which we did not accept due to lack of time
Fellowships and other appointments
Other Professional Contacts
Sponsor
Staff News
CIRRIE

The Institute's own projects

New projects

TAXI FOR ALL

In January, with financial support from the State Commission on Transportation and Communications Research and the Stockholm County Council, Paratransit Division, the Institute started its project TAXI FOR ALL which is to bring wheelchair-accessible mainstream taxi transportation to Stockholm with subsidies to users with disabilities. This project involves direct payments (or cash funding) instead of services in kind and is expected to contribute to users' increased self-determination. In this, the project is a logical continuation of the STIL project (Stockholm Cooperative for Independent Living) which transformed public homehelp services into cash benefits and became model for the Swedish Personal Assistance Act of 1993 (LASS). The project consists of two parts, a feasibility/preparatory study and a pilot project. During the first phase suitable technical solutions, subsidy schemes and organizational solutions are developed, the participants of the pilot projected are selected and contracts between all parties involved are drawn up. The second phase, the pilot project itself, is slated to start in September 2001. Coordinator Bengt-Olof Johansson.

On-going projects

AccessGuide

Continuation of programming work for a low-cost interactive access guide, narrowing down the scope to theaters in Stockholm for a first test. Coordinator Adolf Ratzka.

Completed Projects

Personal Assistance Network

Our 3-year project under the European Union's HORIZON program with support from the Swedish General Inheritance Fund and the company SAMHALL was completed in December. The work entailed starting up an internet full-text library on personal assistance and related themes and developing interactive services for assistance users on the Institute's website www.independentliving.org. With more than 1,200 documents, 1,500 links to internet resources and 8,000 visitors per week the site has become one of the largest of its kind worldwide. For the detailed final report (in Swedish with English summary) see www.independentliving.org. Coordinator Adolf Ratzka.

Proposals submitted

Radio Independent Living

A proposal was submitted to the General Inheritance Fund for a 3 year project to produce a series of internet radio programs to be listened to upon demand through Streaming Audio technology, about concepts, developments, personalities, and projects of interest to people with disabilities in their work for social change. Coordinator Susanne Berg.

Participation as partner in other organizations' projects

Ongoing projects

"Assistenzkampagne"

Lead partner ISL.e.V., Germany, the German Independent Living movement's umbrella organization. The project aims at raising public awareness about the importance of personal assistance for many disabled people. The Institute's role is to advise and to lecture.

Completed Projects

IMPULS 1999/2000

Lead partner Independent Living Vlaanderen, Belgium together with Per Saldo, Netherlands and the Independent Living Institute with financial support from the European Commission DG V under the budget line for "measures to combat social exclusion". The project's aim was to document the discrimination of people with disabilities through, among other things, insufficient personal assistance both in quantity and quality and to promote the concept of Direct Payments for personal assistance services for greater self-determination of assistance users.

As part of the Institute's participation in the project we prepared a paper about the discrimination of disabled people in Sweden, sent a delegation of personal assistance users to the seminar in Brouge, Belgium, May 9-11 and prepared and organized a seminar in Stockholm on July 9. The Institute was represented in Brouge by the Institute's Board Member Bente Skansgård, Oslo. The project report (in Flamish) is available at www.users.skynet.be/anahm.nvhvg/berichten19.htm.

Social Certification

Lead partner IES Iniciativas y Estudios Sociales, A Coruña, Spain together with NPL New Link Project Ltd., Nottingham, UK and the Independent Living Institute with financial support from the European Commission DG V under the budget line for "measures to combat social exclusion". The project's aim was to develop and test routines for an accreditation procedure instrument including manual and training module for a social audit that measures to what degree a private or public entity incorporates the concerns of people with disabilities as patrons and employees, in the provision of goods and services and as employer, in awareness, policy and actual work.

As part of the Institute's participation Maria Wallin, sight-impaired accessibility consultant from Lund was trained in the use of the project's manual. She translated the manual into Swedish and tested it using the Public Library in Lund as test case. She presented her findings and our comments about the manual and its methodology in a seminar in Madrid, Spain on December 15.

Proposals submitted

"Disadvantaged People & e-Government" submitted to European Commission DG XIII under IST Programme. Lead partner Ministry of the Interior, Italy other partners are Italian, French and German firms active in IT. The project is to develop organizational solutions that utilize current IT technology for allowing persons with disabilities and other disenfranchised groups to more effectively participate in the democratic process.

Invited presentations

National conference "The Employer Model in the Provision of Personal Assistance Services", April 6, Mainz, Germany host Zentrum für Selbstbestimmt Leben Mainz, as part of the Institute's participation in its HORIZON project's transnational partnership. The Institute was represented by Terry Skehan and Susanne Berg.

International conference "Design for the 21th Century", June 18, plenary paper, Providence, RI organized by Center for Adaptive Environment, Boston MA. The Institute was represented by Adolf Ratzka.

International seminar "The Future of Self-Help Organizations", August 29, organized by Internationales Haus Sonnenberg, St. Andreasberg/Oberharz, Germany. The Institute was represented by Adolf Ratzka.

First International Conference "Disability Studies: A Global Perspective", October 17-18, Washington, DC, reactor, organized by NIDRR, National Institute on Disability and Rehabiltation Research. The Institute was represented by Adolf Ratzka.

International disability rights law symposium "From Principles to Practice", Washington, DC October 22 - 26, host Disability Rights Education and Defense Fund (DREDF) in partnership with the United States Social Security Administration. The Institute was represented by Susanne Berg and Paul Lappalainen.

"Public Transport in the Future", December 4 - 5, plenary paper, Stockholm, organized by Institute for International Research. The Institute was represented by Susanne Berg.

National Conference "Acesibilidade e autonomia", two plenary papers, December 7-8, Lisbon organized by City of Lisbon, Department of Culture and Social Affairs. The Institute was represented by Adolf Ratzka.

Invitations which we did not accept due to lack of time

National Conference on "De-institutionalization", April 14 - 16, host Center for Independent Living Dublin.

Peer Counselling Training and Methodology Development, Madrid, Spain, April 26 - 30, host IES Iniciativas y Estudios Sociales, A Coruña, Spain in cooperation with ZSL Mainz, Germany with support from the European Union, DG V.

Fifth Annual International Disability Advocacy Conference "Shared World V", May 1 - 4, Debrecen, Hungary, host Disability Rights Advocates Hungary.

First International Conference on Self-Determination and Individualized Funding: Funding, Freedom & Citizenship, July 29 -31, Seattle, USA.

CCS Annual General Meeting, Christchurch, New Zealand, August 16-17 host CCS, New Zealand's largest charity providing services and working for system changes for accessibility and universal design.

International conference "People with disabilities organizing their own lives - ways towards self-determination in Europe", October 11 - 13 in cooperation with Hanover Exposition, host Disability Commissioner Lower Saxony, Germany.

Seminar at the European Day of Disabled People 2000, December 5, Ljiubliana, Slovenia host Slovenian Disability Forum Association.

Second Independent Living Summit, Honolulu, Hawaii December 5 - 7, host ILRU, Houston, Texas and Japanese Council for Independent Living, Tokyo.

Fellowships and other appointments

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, allowing him to visit, study and give talks at various groups in New York, NY and Boston, MA. For information see the attached travel report.

The Institute's director served on WHO's advisory group on the new WHO disability definition ICDH-2

Other Professional Contacts

Guests at the Institute for visits and deliberations

June 21 Dipl. Psych. Petra Stephan, ISL Berlin regarding peer support training.

August 23 Lars Trädgårdh, Professor in European History at Columbia U, New York.

May 4 Norwegian professional journal on social policy interviewed the Institute's director.

August 16 Prof. Sonja Calais van Stokkom, Uppsala University visited the Institute in connection with compiling the Swedish comments regarding WHO's new disability definition ICDH-2.

Visits and deliberations elsewhere

Cape Town, South Africa, March 20 with Filling the Gap, director Fadilla Lagadien. Concerning a joint pilot project on personal assistance in the region.

New York, Boston and Rhode Island, June 15 - 20 see attached travel report.

Kassel, Germany, July 7 - 8 with Intressevertretung Selbstbestimmt Leben ISL e.V. as part of planning a Europe-wide campaign for personal assistance.

Washington, DC, October 17 with Professor Glen White, U of Kansas on joint proposals.

Washington, DC, October 18 with Assistant Secretary Ms. Judy Heumann, Office of Special Education and Rehabilitation Services.

Washington, DC, October 19 with staff at National Institute on Disability and Rehabilitation Research discussing proposals.

Washington, DC, October 19 with Paul Silva, Director Cooperative Association of States for Scholarships (CASS), Georgetown University, Washington, DC re methodological issues in studies and internships for persons with disabilities abroad.

Sponsor

We gratefully acknowledge the provision of web hosting and related services for our site by Cable & Wireless pi.se.

Staff News

The Institute experienced some turnover in its staff during the year.

In June, Webmaster Kris Walmsley joined a group of journalists, a position that ideally corresponds to his interests. We miss him greatly. His successors were Max Ericsson who left after 2 months and Mowbray Jones who was to work during the project's final 6 months but suffered a severe traffic accident that left him on sickleave for 3 months. Miles Goldstick tok over and not only kept the site going but also completed several far-reaching structural changes that will decrease our labor costs for running the site in the future.

Bengt-Olof Johansson, a long-time consultant to STIL, Stockholm Coperative for Independent Living, with a long and broad experience of NGO's, accepted the role of coordinator for project TAXI FOR ALL. His efficient, fair and democratic style is greatly appreciated by all project partners.

Susanne Berg, comrade-in-arms on the board of Independent Living Sweden, with a wide exposure to international work through her position as international secretary in DHR, the Swedish national organization of people with physical disabilities, is ready to coordinate project Radio Independent Living. We are looking forward to working together.

Long-time friend Terry Skehan, the Institute's able administrator has been given greater responsibilities and a concomitant increased workload and at her job at the Swedish Institute for Technical Aids (formerly the "Handicap Institute"). We are grateful to her for staying on board until the end of our HORIZON project.

Malcolm Wald, Montreal, Canada, librarian and expert on web research worked as a consultant during the final 6 months of the HORIZON project, mainly with searching materials for our newsletters, and editing tasks.

Adolf D Ratzka, Ph D
Director
March 2001

CIRRIE

Center for International Rehabilitation Research Information & Exchange

Travel Report to CIRRIE
NAME: Adolf D Ratzka
ADDRESS: Petersens Väg 2, 12741 Stockholm-Skärholmen, Sweden
BUSINESS AFFILIATION: Independent Living Institute
HOSTING AGENCY: Center for Adaptive Environment,Boston
THE CONTACT PERSON: Elaine Ostroff
DATES OF TRAVEL: June 5 - June 20

Activities:
New York City June 6 - 8
Meetings with Concepts of Independence, Inc. New York City President, Mr. Ira Holland,
the Director Mr. Ed Litcher and Board members.

New York City June 9 participation in board meeting of Democrats for Section 504
Manhattan and meeting with Mr. Marvin Wasserman, Democrats for Section 504 and
Disabled in Action, Manhattan.

Boston, Mass June 12 - 13
Meetings with Ms Andrea Schein, State Council on Independent Living, Mass
Steve Spinetto, Director, Mayor's Commission on People with Disabilities, Boston, Mass
Michael Muehe, Director, Commission for Persons with Disabilities, City of Cambridge,Mass
Andy Washburn, ADA Information Specialist , Adaptive Environments, Boston, Mass
Mary Margaret Moore, Execcutive director, Independent Living Center, Salem, Mass
Chris Palames, Independent Living Resources, Shutesbury, Mass
Matlyn D Starks, Vivienne Thomson Independent Living Center, Jamaica Plain, Mass
Laura Rauscher, Head, Disabled Student Services, Smith College, Mass

Providence, RI June 14-18
Participation in conference Design for the 21th Century
Participation in United Nations Seminar on Universal Design in Developing Economies
Meeting with Speed Davis, President's Committee on Employment of People with Disabilities.

Key topic areas:

Personal Assistance

Personal assistance user cooperatives' role in PAS delivery need of information to politicians and public about the cooperatives' high quality of services and cost-efficiency for continued support and expansion of services. Information, training and support packages for personal assistance users sharing of resources in the area of information and training strategies for national policy on personal assistance.

Universal taxi schemes

Subsidy schemes for disabled riders
Financing issues of vehicle adaptation
Institutional constraints
Design solutions
Examples of good practice of functioning universal taxi operations in the US and Europe.

Universal design in developing economies

Opportunities for trainesships for younger disabled people abroad

Was this visit useful to you and your own research program?

Our Institute currently has two projects in the area of personal assistance and universal taxi schemes. The contacts, information and advice I received will benefit our work. Our Institute will continue the contact and share the results of our work.

I had the opportunity of joining the incipient network on Universal Design for Developing Economies which I hope will lead to further contacts and perhaps projects.

Have you planned future collaborative activities with your hosts?

Regarding personal assistance the Institute will utilize some of Concept's training materials for its web publication series on personal assistance management manuals and will refer Swedish experts in user-run personal assistance services to Concepts for study visits. Perhaps we can arrange an exchange program. This might lead to a joint effort in working out a methodology forf measuring the impact of user-run personal assistance schemes on users' lives, on their families and on society as a whole.

I had the opportunity of discussing a new project idea with representatives from NIDRR and the President's Committee on Employment of People with Disabilities. The project would address the need of improving the opportunities of younger disabled people to participate in international traineeships at corporations and organizations abroad. I received valuable information on on-going US projects in this area and was encouraged to continue the contact with these agencies regarding the planned project.

CIRRIE
The Center for International Rehabilitation Research Information & Exchange
SUNY@Buffalo
Attn: Kathleen Pipitone
515 Kimball Tower
Buffalo, NY 14214-3079 USA