Independent Living Institute Annual Report 2010

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In English: 2010, 2009, 2008, 2007, 2006, 2005, 2004, 2003, 2002, 2001, 2000, 1999, 1998, 1997, 1996

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Independent Living Institute Annual Report 2010

Ongoing projects

Project Assistanskoll’s (approximately “control over your assistance”) financial support by the Swedish Inheritance Fund (Allmänna Arvsfonden) came to an end in June 2010. Since then this Swedish language online service has continued to increase its content and exposure offering free information, facts and figures, analysis and advice to personal assistance users, their families and assistants in choosing a service provider, supporting municipal case workers in informing and advising personal assistance users as well as updating the public about the fast changes in personal assistance legislation, legal praxis and market development. Up to the end of 2010 195 private assistance providers had joined Assistanskoll’s provider comparison. These providers together served a total of 7,944 customers/members which represents approximately 74% of the Swedish private market. Our homepage has started publishing articles about the situation of personal assistance users in other countries. Assistanskoll’s newsletter issued approximately monthly and written by Kenneth Westberg has gained a leading position in monitoring the development of personal assistance in Sweden which is confirmed by the many mails we receive and a rising number of references to Assistanskoll in the disability media. The newsletter reaches almost 4,000 email addresses of which approximately 340 are assistance providers and 950 are local government case workers. Remaining subscribers are personal assistance users, their families and assistants, disability organizations and their periodicals, trade unions, civil servants and politicians at different levels. Assistanskoll’s homepage had 66,000 unique visitors (52,000 in 2009). The exposure has made Assistanskoll’s homepage and newsletter an interesting forum also for advertizements.

The Discrimination Reporting Service (Swedish language) facilitates reporting discrimination to the office of the Discrimination Ombudsman and local government building permit boards by offering multiple pre-formulated statements on its homepage to be selected by a mouse click. An important tool for discrimination reporting campaigns organized by the annual March for Access (Marschen för tillgänglighet) throughout the country the service documents the extent of discrimination against persons with disabilities in a Google searchable public database. The DO Reporting Service has not had its own funding. At the moment we are looking for a more sustainable financial solution.

Accessible Vacation Exchange promotes travel abroad for persons with extensive disabilities by facilitating home swapping. After the service had undergone an upgrade two years ago resulting in improved appearance and additional functions we have not had resources to properly promote it. Despite the lack of marketing, over one hundred websites refer to the service which Miles Goldstick currently attends to on a volunteer basis.

ILI’s online full-text library is one of our most important services offering authors publishing, exposure and safe archiving for their work, such as articles in scientific journals, reports, manuals and lectures on Independent Living and related themes. There are currently a little over 1,000 mainly English language documents in the searchable library including approximately 200 in Swedish and approximately 100 in other languages such as Spanish, French and German. During 2010 several hundred items were added with the help of our new Content Management System. Due to our website’s good Google Page Rank the library has been receiving a wide and continuously growing exposure with 120,000 unique visitors in 2010. 

ILI’s homepage continued in 2010 to be the first search result for “Independent Living” in Google among a total of 9.5 million answers. Many of the 650,000 unique visitors send us kudos for our library and other services despite our homepage’s need of fundamental improvements in appearance and usability.

Since August 2009  ILI has participated in Project STEPS (Stimulate entrepreneurship in the provision of social services for people with disabilities) along with lead partner  ADO Icarus, Belgium (lead partner) and Inima de Copil, Romania; Association Friends of the Home for Children, Bulgaria; and Academy of Management, Poland. The two-year project  financed by the European Union’s Leonardo Program is to stimulate a wide pan-European exchange of expertise among the partner organizations in former Eastern Europe and Belgium and Sweden through joint seminars and mutual study visits.  In February the partners visited ILI and the Swedish personal assistance user cooperatives  STIL and JAG. Another study visit took place in Flanders and the Netherlands in June where ILI was represented by Davy Gaeremynck and Kenneth Westberg.  In the workshop in Galati, Romania in October Adolf Ratzka and Davy Gaeremynck contributed with presentations on de-institutionalization and users’ self-determination.  

New projects

ILI took part in project TA PLATS! (Take your place!) with financial support of STIL. Our participation was strongly reduced due to the negative decision by the Swedish Inheritance Fund (Allmänna Arvsfonden) for our application for a larger three-year project. In order to highlight Sweden’s lack of accessibility ILI organized a series of events in Stockholm’s House of Culture (Kulturhuset) in May and June: 

During one of the events the prize “Eradicate Apartheid in Sweden” was awarded to the person who had reported the most discrimination cases in ILI’s Discrimination Reporting Service. The prize consisted among other things of a study trip to Barcelona. The trip has been documented on ILI’s homepage.

The plan of a European network on personal assistance grew out of an international Independent Living seminar in Stockholm in 2009. As a first step, the network will consist of a database with a list of experts on personal assistance and descriptions, analyses, legislation, training material and other resources. ULOBA has contributed financially to the network. So far we have published a number of articles on Assistanskoll’s homepage about the situation of personal assistance in other countries. The texts will be translated to English and published in ILI’s library.

The other planned project, Network on accessible public transportation, is still under development. In a pre-study financed by STIL we look at the feasibility of compiling a list of European experts, trade organizations, manufacturers, operators, researchers and users  together with building a database with examples of good practice, analyses and research with a view on applying for a grant, if the plan appears viable.

“With the Law as Tool” (“Med lagen som verktyg”) is the title of a pre-study whose application was submitted to the Swedish Inheritance Fund in October. The study is to look at the feasibility of and the requirements for a larger project which would build up legal expertise among Swedish disability organizations on discrimination on the grounds of disability. The objective is to enable the disability movement to better utilize existing legislation and legal praxis at the Swedish, EU and United Nations level for defending the human and civil rights of persons with disabilities. A number of NGOs abroad that we have cooperated with over the years serve as role models for the initiative.  

Completed projects

Assistanskoll’s support by the Swedish Inheritance Fund terminated in June but the  service continues without any changes.

ILI was partner in project “Human Rights – Way to Democracy” ( cooperating with five Nordic NGOs and aiming at promoting conditions for persons with disabilities in Kaliningrad, Russia to gain more personal and political power, self-determination, participation and equality in society. Partners were Apeirons in Lettland, Apparel in Kaliningrad, Old People Home and Service in Pirkankoivu, Finland och Århus Health Care College, Denmark. In January Petra Jonsson represented ILI in a seminar in Kaliningrad meeting with Russian activists. Kenneth Westberg reported on the situation for personal assistance users in Kaliningrad which was published (in Swedish) in our series on personal assistance abroad on Assistanskoll’s homepage  (in Swedish to be translated to English)  The project was financed by the Nordic Council on Disability Policy and concluded with a conference in Denmark in June.

Contracted by Expertise Centre for Independent Living in Gent, Belgium ILI prepared a descriptive and analytic report of personal assistance in Sweden. The report was presented at the project’s conclusion at an international conference I Gent in June.

Own events

September 16-17   ILI organized, together with our partners from Riga, Latvia and Kaliningrad, Russia a two day seminar as part of the joint project Human Rights – Way to Democracy. The seminar dealt with policy for accessibility and personal assistance and took place at the offices of STIL.  Part of the seminar was documented by filmmakers Ioannis Vlatakis and Stelios Kibouropoulos, Pireus, Greece as part of their planned film about Independent Living.

May 29 – June 2  IL organized a series of events at the Stockkholm City House of Culture

The prize Eradicate Apartheid in Sweden was awarded to the person who had reported the most discriminatory activities on ILI’s discrimination reporting service. The prize consisted, among other things, of a study visit to Barcelona, Spain. The visit is documented on ILI’s homepage.

Participation in other organizations’ events

ILI staff members took part in the following events 

Invitations with fully paid expenses which we could not follow

  • December 7-8 as rapporteur at conference “Physical Rehabilitation and Independent Living for People with Disabilities”, Rhodos, Grekland organized by the Regional Federation of People with Disabilities Dodekanisoy
  • November 25 invited expert at hearing about the demands and implications of the implementation of the United Nations Convention on the Rights of Persons with Disabilities organized by the Social Commission, Parliament of the State of Bavaria, Munich, Germany
  • October 27-28 lecture at Second International Conference "Equal Rights - Equal Opportunities" organized by the Moscow Department of Social Care
  • September 7-8 invited as speaker about the theme research and its implementation and as panel member at the conference Networking for Independent Living within South Eastern Europe, organizer YHD


  • Assistanskoll published 106 articles (most in Swedish) during the year containing interviews with personal assistance users, politicians, lawyers, civil servants in public agencies and representatives of civil society. An additional 109 articles were published on Assistanskoll’s homepage about various aspects of personal assistance such as legislation and its interpretation by the Social Insurance Fund (Försäkringskassan), other government agencies and the courts, personal accounts by assistance users, etc.
  • Assistanskoll’s newsletter was published 12 times during the year with summaries and links to the latest articles on Assistanskoll’s homepage as well as information about the service providers taking part in our comparative consumer service.
  • During the year Assistanskoll  has updated two guides for personal assistance users, “Att välja assistansanordnare” (“Choosing a personal assistance provider”, in Swedish, and “Att vara egen arbetsgivare”  (”Employing one’s own assistants”, in Swedish). Assistanskoll’s reference library with facts and figures continued to grow with legal texts, regulations, recommendations from government agencies, government studies, dissertations and papers, media coverage, etc.
  • ILI’s Adolf Ratzka contributed to the chapter on Personal Assistance in the WHO publication Community Based Rehabilitation Guidelines.


Study visits and deliberations


September 8 filmmaker Sarah Burton of Fertile Films, Australia interviewed Adolf Ratzka in Lancaster, UK about the Independent Living movement’s growth geographically, ideologically and politically.

  • September 16-17 filmmakers Ioannis Vlatakis and Stelios Kibouropoulos, Pireus, Greece  documented a part of our partnership meeting with our colleagues from Kaliningrad and interviewed ILI’s Adolf Ratzka for a film for a Greek audience about the Independent Living ideology and approach.

Study visits at ILI 

  • November 11 Prof Momose, Takachiho University, Tokyo researches social insurance
  • November 9 four civil servants from the Tokyo Prefecture administration studying de-institutionalization and personal assistance abroad
  • October 28 seminar and study visits at ILI with FRU, Föreningen för rehabilitering i u-länder (association for rehabilitation in developing countries) and participants from, among others, Romania, India, Mexico and Bolivia
  • August 27 Shanaaz Majiet, disability consultant, Cape Town, South Africa
  • August 24 delegation from Korea Culture Association for the Disabled consisting of 11 persons studying and comparing access to culture in Sweden and Korea
  • July 6  Silvia Cutrera, President Agenzia per la Vita Indipendente, AVI onlus, Rome,  Italy that supports personal assistance users
  • June 22 delegation from the Parliament of the State of Thuringia, Germany with MPs, civil servants and representatives of the civil society to study personal assistance policy and  personal assistance cooperatives for de-institutionalization
  • June 17 Ahiya Kamara, Commissioner for Equal Rights for People with Disabilities, Israel
  • June 5 16 students under Prof Ross, Duale Hochschule Baden-Württemberg Stuttgart, Tyskland to study the Independent Living movement its solutions for the equalization of opportunities and full participation of persons with disabilities
  • May 14  WDE (Women with Disabilities Empathy) from South Korea
  • May 10 David Conry, President of Young Care Australien on study tour in Europe to look at solutions for persons with extensive needs of personal assistance to live outside of residential institutions
  • April 27  20 members of the Parliament of the State of Bavaria, Germany to study ways to implement the United Nations Convention on the Rights of Persons with Disabilities
  • April 13  Kingkaew Inwang, Secretary General, National Office for Empowerment of Persons with Disabilities (NEP), Ministry of Social Development and Human Security, Thailand upon an invitation by the Swedish Tax Agency (Skatteverket)
  • March 30  Dr. Pam Thomas, researcher at the University  of Lancaster, UK  and member of the Leeds City Council with special interest in housing issues
  • February 18 18 delegates from partner organizations in the STEPS project from Belgium, Romania, Poland and Bulgaria.
  • January 21 two students of “Art and Culture Management” Catholic University, Angers, France to study and compare access for persons with disabilities to culture in Sweden and France

Other professional contacts

Over the years ILI has developed into an information and contact referral hub which has allowed us to widen our network, deepen our cooperation with other organizations and to contribute to an increased rate of change in a number of countries regarding policy for accessibility, personal assistance, assistive technology, employment. Inquiries may involve  projects, literature sources, referral to other organizations, experts or involve individuals looking for support and advice. We spend almost 50% of a full-time on this activity – costs which are hard to cover.

During the year ILI staff members have been

ILI staff

Susanne Berg, well-known Swedish Disability Movement and Disability Studies profile, writer and debater, has earlier worked for ILI projects Radio Independent Living and Fashion Freaks and shares the position of ILI’s Director with Adolf Ratzka as of September. She works part-time.

Philip Day continues as database programmer on part-time working with among other projects Assistanskoll where he participates in the development of the questionnaire,  Discrimination Reporting Service as well as with maintaining the various catalogs on our homepage such as Study and Work. He is also seconded to the Spinalis Foundation where he works with their project Spinalistips.

Sebastian Ferrer assisted with the annual financial statement for year 2009.

Hans Filipsson ran Discrimination Reporting Service part-time up to fall.

Davy Gaeremynck works as part-time administrator.

Miles Goldstick worked with the ILI Library entering items with CMS Drupal during the first half of the year.

Petra Jonsson continued working part-time with administration and payroll, was one of ILI’s authorized signatories and represented the organization abroad on a number of occasions. She left her position for studies in June. We miss her greatly.

Algren Morgan continues as administrator for Assistanskoll where he is responsible for contacts with service providers and municipal case managers and participates in further developing our questionnaire.

Adolf Ratzka shares ILI’s directorship with Susanne Berg. He works part-time.

Kenneth Westberg continues his part-time position as journalist for Assistanskoll where he is responsible for newsletter, interviews, news, guides and manuals, reference library with facts and figures. He also participates in further developing the questionnaire.


We thank

  • STIL, Stockholm Cooperative for Independent Living (the Swedish name has been changed to Founders of Independent Living in Sweden) which contributed to ILI’s activities in the form of physical work spaces and financial support. The support was used for among other things project Ta Plats! and for preparing a network of experts on accessible public transportation.
  •  ULOBA for its financial support which is used for, among other things, to start up a network of experts on personal assistance.
  • Allmänna Arvsfonden (Swedish Inheritance Fond) for its support of project Assistanskoll for over three years up to June 2010.
  • International Programme Office for Education and Training (Internationella Programkontoret) which made our participation in project STEPS possible.

Our board

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

Previous reports

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

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


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