Independent Living Institute (ILI) Annual Report 2008

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Independent Living Institute (ILI),
Annual Report 2008

The highlights for the year 2008 included project Assistanskoll, currently our most important project, that took its present form during the year; our international work expanded through frequent contacts with two Independent Living organizations in the Middle East; vi celebrated the 25 th anniversary of Independent Living movement in Sweden together with many old and close friends.

Ongoing projects

Project  Assistanskoll financed by the national General Inheritance Fund (Allmänna Arvsfonden) entered its second year aiming to assist recipients of cash subsidies from the National Social Insurance Fund (Försäkringskassan), their families and municipal civil servants as well as personal assistants in comparing and making informed choices regarding personal assistance providers. The online service informs about the services provided, their costs and conditions, facts which often are not mentioned in the providers’ advertisements, such as assistants’ average wages and type of labor union contract. By the end of 2008 140 personal assistance companies and cooperatives had displayed the answers to our questionnaire on our site. The questionnaire underwent updates due to the changes in the law per July 1. Assistanskoll’s newsletter written by Kenneth Westberg is sent out several times a month and has gained a leading role with service providers and municipal civil servants regarding monitoring changes in legislation.

In the two-year PT access project to be competed in spring 2009 the Independent Living Institute has partnered with The Department of Transport Sciences, University of Dresden, JMP Consulting, UK and lead partner Forschungsgesellschaft Mobilität (Austrian Mobility Research) FGM-AMOR gemeinnützige GmbH. The project analyses the situation of accessibility of public transport systems for people with disabilities in 25 EU countries. The costs and benefits of good practice examples in making public transport accessible are examined. The project deepens the understanding of the transport-related contexts of social exclusion of disabled people, and draws conclusions about the effect which accessible public transport has on employment and social inclusion prospects for disabled people. This project is supported through the Research for policy support heading of the European Union’s Sixth Framework Programme, PRIORITY 8.1 Policy-oriented research, Scientific support to policies.

Reporting discriminating activities to the Disability Ombudsman Reporting Service can result, within the limitations of current legislation, in measures taken by the Office of the Discrimination Ombudsman and the local government’s building permit board. The online service archives reports in a national database that is indexed by search motors such as Google. The service using partly pre-formulated sentences to expedite reporting is used in the now nation-wide reporting activities of the March for Access network. The founder and coordinator of the MfA, Hans Filipsson, works part-time for ILI.

Accessible Vacation Exchange intends to promote travel for persons with extensive disabilities by facilitating home swapping. During the year the service was upgraded with an improved appearance, the possibility of uploading photos and better search and sorting features.

Our full-text virtual library continues to be one of our most central services. We offer authors of such documents as scientific articles, reports, manuals and lectures on Independent Living and related themes a free, secure and sustainable method of archiving and disseminating their work in our accessible and searchable library. The library currently has about 1,000 documents, of which about 200 are in Swedish and 100 in other languages, mostly Spanish, French and German. Due to the high Google Page Rank of 7 documents on our website get a high exposure. During 2008 the library received about 135,000 unique visitors corresponding to a 15% rise compared to 2007.

ILI’s homepage continued to be the first among some 3 million results when searching in Google for the term “Independent Living” and received about 565,000 unique visitors during 2008 (an increase from 478,000 in 2007). Many appreciative comments were received about the full-text virtual library and other online services.

Our events

On November 16-17 ILI organized a two-day conference, with financial support from STIL, probably the first European personal assistance user cooperative, celebrating the 25th anniversary of the first Scandinavian event on Independent Living in December 1983 which marks the beginning of the IL Movement in Sweden. Over 150 persons from 20 countries including Israel and the US participated.

Participation in  events

  • ILI lectured four times during the year in the course ”Individual Design of the Environment” as part of the Occupational Therapy curriculum, under Karin Johansson, Ph D, at Karolinska Institute, Neurotec Department.
  • October: After several years of contact with Center for Independent Living Jerusalem and Stars of Hope, an organization of women with disabilities in Ramallah, Palestine Adolf Ratzka was invited in October as keynote speaker and workshop leader to a week’s program consisting of two national conferences in Jerusalem and Ramallah, a number of workshops and meetings with Israeli politicians, among them Minister of Social Affairs Mr. Izak Herzog. Further collaboration between the three organizations is planned in the areas of policy development, training and peer support for Independent Living and personal assistance.
  • September: lecture ”Vem sparar i LSS-kommitténs förslag?” (”Who saves with the LSS-committee’s proposed changes?” at the Stockholm conference ”Funktionshinder i tiden 2008  -  samhälle i förändring - stöd i förändring” (Disability issues over time: supporting a society in change. Organizers were Sveriges kommuner och landsting (Swedish Association of Local Governments) and Socialstyrelsen (National Board of Welfare).
  • July: keynote  at a seminar on labormarket policy and Independent Living in Barcelona organized by  Baix Llobregat County Council, Catalunya, Spain.
  • June: Adolf Ratzka took part in WHO:s Regional Consultation on the World Report on Disability and Rehabilitation in Rome.
  • May: ILI’s research analyst Dr. Peter Anderberg gave two lectures at the European conference ”Living independently with MS” organized by the European MS Platform in Reykjavik, Iceland.
  • March: lecture on personal assistance and needs assessment at the outpatient spinal cord injury clinic Spinalis, Karolinska University Hospital, Solna.

Speaking invitations (expenses paid) which we could not follow

  • November: Annual Conference, Nursing Homes Ireland Organisation, Dublin
  • October: Conference Personal Assistance = Autonomy  Independence = Integration in Santiago de Compostela, Spain organized by FUNGA, Galician Foundation for Personal Autonomy Encouragement and Assistance of Functional Diversity People
  •  September: Fachmesse Integra, Linz, Austria
  • June: Regional Conference  „Step towards Europe II - Disability Rights and Policies in South East Europe” Sarajevo, Bosnia and Herzegovina
  • May: International Conference on Self-Determination, Detroit, USA
  • February: FoU – konferens "Välfärd på marknadsplatsen"  (R & D conference ”Welfare in the Marketplace”)  organized by the local and regional government of Linköping, Sweden

Our publications

Assistanskolls nyhetsbrev (project Assistanskoll Swedish newsletter) had 15 issues during the year reaching over 2,200 persons, among them personal assistance users, service providers, politicians, local governments’ caseworkers and personal assistants.
In connection with ILI’s conference ”25 years Independent Living in Sweden” Mr. Kalle Könkkölä, Threshold, Helsinki, Finland was interviewed about his work in Finland and internationally. The sound files can be legally downloaded atönnkkölä_in_person_-_interview_by_Adolf_Ratzka_(DVD)   and


In addition, we receive a sizeable number of phone calls and emails with interview questions from researchers and students.

Study visits at ILI

  • December: Prof Anne Waldschmidt, Chair of Sociology of Disability, Social Policy and Social Management, University of Cologne, Germany
  • October: 40 students lead by Prof Clemens Fischer, Edith-Stein-Institut  für  soziale Berufe Rottweil, Germany
  • October: 14 students lead by Prof Schaub, Katholische Universität für Angewandte Wissenschaften, Cologne, Germany
  • September: Mr. Joan Sauri, psychologist and researcher with Institut Universitari Neurohabilitació Guttmann Badalona, Spain
  • August: 10 representatives from Fukuoka Prefecture, Japan
  • April: Mr. Poul Erik H. Petersen,  Director, Disabled Peoples Organisations Denmark
  • April: Ms. Anne Sinnott and Mr. Julian Verkaaik, Research Fellows, Burwood Academy, Christchurch, New Zealand
  • Jan: Ms. Pam Thomas, University of Lancaster, activist and researcher on Disability Studies and housing, UK

Other professional contacts

As always, we have received a great number of inquiries about Swedish and European policy and implementation requesting clarifications, references to publications or resource persons.

During the year ILI’s staff served as

Our staff

Pär Blomqvist started in fall writing articles and glossary for project  Assistanskoll .
Philip Day worked part-time with database programmingfor projects  Assistanskoll, HO anmälningstjänst, maintained online registers for project Study and Work, the Links section and for Global Networking, the registry of disability organizations around the world and was contracted by Spinalis Foundation to develop the technology for project Spinalistipps.
Sebastian Ferrer continued working for project Assistanskoll and volunteered to do parts of ILI:s accounting work with the authorization to sign on behalf of the organization.
Hans Filipsson ran and improved Handikappombudsmannens anmälningstjänst, ILI’s online discrimination reporting service on a part-time base.
Miles Goldstick  worked part-time in charge of the technical aspects of ILI’s homepage.
Petra Jonsson continued volonteer work for project Cash Subsidies for AT and started paid administrative work for ILI’s conference in November celebrating a quarter century of the Independent Living movement in Sweden.
Algren Morgan continued as part-time administrator of project Assistanskollwhere he is in charge of contacts with service providers and local government caseworkers and participates in the further development of the service.
Adolf Ratzka continued part-time work as ILI’s director.
Kenneth Westberg was hired in January as journalist for project  Assistanskollwhere he is in charge of the Newsletter and participates in formulating the questionnaire and in further developing the service.
Nicoletta Zoannos worked full-time for the organization’s administration and represented the organization in some international projects. Her responsibilities included our accounts and the preparations for ILI’s conference in November.

Our sponsors

We are grateful to

  • STIL, Stiftarna av Independent Living i Sverige (”Founders of Independent Living in Sweden” formerly ”Stockholm Cooperative for Independent Living”) which contributed to ILI’s work through providing office space and financial support which primarily was used for maintaining and developing our homepage as well as for financing smaller projects and for co-financing EU projects.
  • Interoute, for webhosting and related services.
  • Allmänna Arvsfonden (Swedish General Inheritance Fund) which finances project Assistanskoll  
  • EU Commission which enabled us to participate in project PT Access.

Our board

Bente Skansgård
Kapka Panayotova
Kalle Könkkölä
Adolf Ratzka

ili Project: