Independent Living Institute Annual Report 2009

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

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Independent Living Institute Annual Report 2009

Despite economic difficulties we managed to continue our activities and to attract new and valuable staff members and trainees.

Ongoing projects

Project Assistanskoll financed by the Swedish Inheritance Fund (Allmänna Arvsfonden) entered its third 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 2009 over 150 personal assistance providers, companies and cooperatives, had chosen to join and present themselves in our service. 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 by monitoring the assistance market and changes in legislation and legal praxis. We receive many mails and the Newsletter’s articles are often referred to in disability magazines and their homepages. The newsletters reach currently 3,400 email addresses, among them 280 assistance providers and 900 municipal employees, disability organizations and their periodicals, trade union officers and politicians at different levels as well as personal assistance users, their relatives and personal assistants. Assistanskoll’s homepage had a total of 52,000 unique visitors during the year.

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 offering partly pre-formulated statements to expedite reporting is used in the now nation-wide reporting activities of the March for Access (Marschen för tillgänglighet) network. MfA’s founder and coordinator, Hans Filipsson, works part-time for ILI.

Accessible Vacation Exchange promotes travel abroad for persons with extensive disabilities by facilitating home swapping. The service underwent an upgrade resulting in an improved appearance and additional functions.

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. During 2009 we continued our efforts of phasing in a new platform for the library in form of Drupal, a Content Management System which facilitates adding documents. Due to our Google Page Rank of 7 documents on our website get a high exposure. In 2009 the library received a total of about 114,000 unique visitors.

ILI’s homepage continued in 2009 to be the first among some 4,2 million results when searching in Google for the term “Independent Living". The site received about 500,000 unique visitors during 2009. We get a number of appreciative comments about the full-text virtual library and the other online services.

New projects

Since August ILI has been partner in the Leonardo da Vinci project STEPS (Stimulate Entrepreneurship in the Provision of Social Services for Persons with Disabilitiies).  The partnership consists of project coordinator ADO Icarus, Belgium, Inima de Copil, Rumania, Association of Friends of the Home for Children, Bulgaria, Academy of Management, Poland and ILI. The project is planned for two years, financed by the EU Program for Lifelong Learning and intended to stimulate a wide and pan-European exchange of knowledge and experience among the partner organizations through study visits in the old EU member states Sweden and Belgium to be followed by training and workshops in Bulgaria, Poland and Rumania. Among the outcome will be a manual on entrepreneurship in the social area. After a kick-off meeting in Hasselt, Belgium in October the partners will meet again for a study visit in Stockholm in February 2010.

ILI is partner in the project Human Rights - Way to Democracy ( in cooperation with Apeirons, Latvia, Apparel, Kaliningrad, Old People Home and Service Pirkankoivu, Finland, and Århus Health Care College, Denmark. Financed by the Nordic Council and ending in 2011 the project is to promote the opportunities for persons with disabilities in Kaliningrad for more personal and political power, self-determination, full participate on and equality.  The partners met for a kick-off meeting in Riga, Latvia in March. As a first step in the project the partners will report on the situation of persons with disabilities regarding the role of NGOs and the work for implementation of the United Nations Convention on the Rights of Persons with Disabilities. A seminar in Kaliningrad is planned in 2010.

ILI’s grant application to the Swedish Inheritance Fund (Allmänna Arvsfonden) for participation in project TA PLATS!  (approximately Take your Rightful Place) was turned down. The project. among other things, was to build a Swedish network for accessibility and award the “Abolish Apartheid in Sweden" Prize.

Completed projects

Project Public Transportation Access (PT Access) completed in March was conducted by a consortium consisting of the Department of Transportation Sciences, University of Dresden, Germany, JMP Consulting, UK, ILI under the coordination of Austrian Mobility Research FGM-AMOR not for profit GmbH and financed under the European Union Sixth Framework, Scientific Support to Policies program. The project was to describe the situation of public transportation in 25 EU countries in regard to access to people with disabilities and to show its implications for labor market participation and marginalization of persons with disabilities.

Through the project we gained insights in Sweden’s and other countries’ policies for accessible public transportation, monitoring activities and degree of goal completion.

Our events

Immediately before the Equality Summit held under Swedish European Union Presidency in Stockholm ILI organized a two-day international seminar  in Stockholm, November 15-16, on personal assistance and accessibility attended by representatives of Independent Living organizations from Finland, France, Iceland, Ireland, Norway, Slovenia and Sweden as well as the European Network on Independent Living, ENIL. ILI was charged with building and coordinating two international networks on personal assistance and accessible public transportation. STIL financed the event.

Participation in events

  • ILI lectured three 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.
  • December 3-4 Reykjavik, Iceland as lecturer at conference on the United Nations Day of Persons with Disabilities and several meetings with Members of Parliament and representatives of disability organisations, in particular, the country’s recently formed first personal assistance user cooperative.
  • September 14-17 Strasbourg, France in connection with the European Network on Independent Living, ENIL Strasbourg Freedom Drive as lecturer on personal assistance and workshop on personal assistance policy, meetings with Swedish MEPs and representatives of the European Parliament’s Intergroup on Disability, deliberations with French activists regarding strategies for spreading personal assistance in France.
  • September 9 as moderator and panel member at hearing with Members of Parliament about the conclusions of the Parliamentarian Commission (LSS-kommitténs slutbetänkande) in connection with the trade exhibition A Good Life (Ett bra liv) in Stockholm
  • June 3-6 Gent, Belgium as lecturer at conference on direct payments for personal assistance organized by GRIP, the Flamish civil rights organisation of persons with disabilities, meetings for planning joint projects and deliberations with service provider Ado-Icarus and Expertise Center for an Independent Life, Gentbrugge.
  • May 28 Växjö, Sweden as lecturer for municipal employees about examples of accessible infrastracture abroad
  • Februari 16-17 as lecturer at ULOBA, Oslo about IL-history and ideology as well as consultant for ULOBA’s cost-benefit analysis study of personal assistance.

Speaking invitations (expenses paid) which we could not follow

  • December 10-12 Istanbul, Turkey for lecture at the 4th Disabled People Congress, Exhibition and Social Activities under the tutelage of Prime Minister Erdogan
  • December 3 Lisbon, Portugal for keynote address on Independent Living at national conference on the United Nations Day of Persons with  Disabilities, organized by the National Institute for Rehabilitation, Ministry of Labor and Social Solidarity, Portugal.
  • November 29 Budapest, Hungary for lecture at a seminar on Special Education and Disability Policy, organized by Eotvos Lorand University, Budapest
  • November 15 Zagreb, Croatia for meetings with representatives of government, political parties, authorities and service providers regarding disability policy, organized by the Swedish Embassy in Zagreb
  • March 17-18 Brussels, Belgium for lecture at conference and meeting of End User Forum organized by AGE.- The European Older People’s Platform in their project MEDIATE

Our publications

  • Video interview with Kalle Könkkölä, Threshold, Finland from November 2008 and published on ILI’s homepage, YouTube and Pirate Bay in January 2009
  • Articles for project Assistanskoll (in Swedish)

    74 articles based on interviews were written for Assistanskoll during 2009 (articles are sorted by date or by keyword). Assistance users, politicians, legal experts, researchers, high-ranking officials of state agencies and representatives of disability organizations were interviewed about aspects of personal assistance such as policy and its enforcement, legislative propositions, public authorities’ praxis, personal accounts and more.
  • Assistanskoll’s newsletter (in Swedish)

    During 2009 13 editions of the newsletter were published summarizing and linking to the articles on Assistanskoll’s homepage. The newsletters also list the personal assistance providers that started cooperating with Assistanskoll or updated their information.
  • Other information on Assistanskoll (in Swedish)

    During the year two guides were published for personal assistance users, “To select your  assistance provider" and “To employ your assistants yourself". A database was added to the site listing, among other things, information about personal assistance with links to laws and regulations, guidelines issued by the relevant authorities, legislative propositions, government reports, dissertations and academic papers and news items.


  • May  Anne Gersdorff, a student at the Alice-Salomon-University Berlin was forced to terminate her traineeship at ILI due  to an accident. Anne is member of the Berlin Center for Independent Living (Zentrum für Selbstbestimmt Leben Berlin) and personal assistance user.
  • February 23 - June 26 Caroline Jaillet, a student at L’Institut D’Etudes Politiques de Grenoble (IEP) worked during her traineeship with, among other things, writing comparative articles about Swedish and French solutions for housing and assistance with the activities in daily living


September 16 Dr Paul Durke, UK interviewed Adolf Ratzka on video in connection with ENIL’s Strasbourg Freedom Drive.


On July 2 Adolf Ratzka was honored with the European Citizen Award from the European Anti-Discrimination Council, London for his long work for civil rights and self-determination of persons with disabilities in Europe.

Study visits at ILI

  • December 16  a delegation of 15 persons from Belarus visited ILI with financial support from the United Nations Development Program (UNDP). They consisted of representatives from the government, Parliament and civil society studying disability policy as part of project “Assistance to Belarus in joining the Convention on the Rights of Persons with Disabilities and its implementation".
  • December 10  Juliska Hauwermeiren, Experisecentrum Onafhankelijk Leven (Expert Center on Independent Living), Gentbrugge, Belgium
  • December 7 Professor Adrienne Asch, New York
  • November 13 David Egan, Ireland consultant with the Irish government on a national personal assistance policy
  • August 25  Jean-Pierre Ringler, chairperson of Vie Autonome France which plans to start a series of Independent Living centers throughout France
  • August 24  Dr. Pam Thomas, University of Lancaster, activist and researcher in Disability Studies with special interest in housing issues
  • August 18  a German delegation consisting of 24 chief executives of public and private service providers working in the State of Rhineland-Palatinate headed by the Minister of Social Affairs and the Disability Ombudsman
  • August 17  Ms. Dorrit T.M. Gruijters MA, Chief Secretary, Dutch Long Term Care Mission, Dutch Ministry of Health and Social Affairs for gathering examples of good policy and practice for impending Dutch reforms in this area
  • June 23  a South Korean delegation of 18 chief executives and politicians responsible for state-run social services from the Korean Association of Welfare Institutes for the Disabled Cooperation headed by Professor Jeong, Seoul, Korea
  • June 18  Andrew Hall, Chief Executive New Zealand Spinal Trust
  • May 24  25 students at the Department of Social Studies Berufsakademie Villingen-Schwenningen. Germany
  • February 12  38 students from Berufsakademie Villingen-Schwenningen. Germany headed by Professor Horn
  • February 11  Gudmundur Magnusson, chairperson of ÖBI Iceland (the Icelandic umbrella organization of disability organizations) for information and advice on personal assistance policy and implementation

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

Susanne Berg, well-known writer and analyst with strong roots in the disability community and Disability Studies who earlier worked with ILI projects Radio Independent Living and Fashion Freaks shares the executive position with Adolf Ratzka since September. She works part-time.

Pär Blomkvist left ILI in April.

Philip Day worked part-time with database programming for 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 worked with parts of ILI:s accounting work.

Hans Filipsson ran and improved Handikappombudsmannens anmälningstjänst, ILI’s online discrimination reporting service on a part-time base. 

Davy Garemynck started part-time in October working with administration. 

Miles Goldstick  worked part-time in charge of the technical aspects of ILI’s homepage.

Petra Jonsson worked part-time as ILI’s administrator, was authorized to sign on behalf of the organization and represented ILI on a number of international events.

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 shares the position of director with Susan Berg as of September.

Kenneth Westberg continued part-time as journalist and project coordinator for project Assistanskoll  where he, among many other things, writes texts for the site and its Newsletter.

Nicoletta Zoannos left ILI at the end of the year for work with STIL where she soon became head of the communications department.

Our sponsors

We are grateful to

Our board

  • Bente Skansgård
  • Kapka Panayotova
  • Kalle Könkkölä
  • Adolf Ratzka

Previous reports

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

På svenska: 2008, 2007, 2006, 2005, 2004, 2003, 2002, 2001, 2000, 1999, 1998, 1997, 1996

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