About the Independent Living Institute (ILI)

Mission

The Independent Living Institute (ILI) is a policy development center specializing in consumer-driven policies for disabled peoples' freedom of choice, self-determination, self-respect and dignity. Our ultimate goal is to promote disabled people’s personal and political power. Towards this end we provide information, training materials and develop solutions for services for persons with extensive disabilities in Sweden and internationally. We are experts in designing and implementing direct payment schemes for personal assistance, mainstream taxi and assistive technology.

Activities and Projects (see also latest Annual Report - 2019)

  • Disabled Refugees Welcome is a three year project beginning in 2017, with financial support from the Inheritance Fund (Arvsfonden), to improve the reception and provision of services to refugees with disabilities in Sweden.
  • Our virtual full-text library continuously compiles documents on Independent Living and related subjects such as personal assistance, anti-discrimination laws, universal design (i.e. buildings, communication, transportation usable by all), training manuals, etc. The library’s documents are primarily in English.
  •  Article 19 as a tool
  • Assistanskoll (in Swedish only) provides information, facts and statitics, analysis and advice to assistance users, their families and assistants in the choice of assistance providers. Assistanskoll keeps the public informed about the rapid changes taking place in legislation, case law and market development.
  • The Disability Ombudsman Reporting Service (in Swedish only) facilitates reporting to the Office of the Disability Ombudsman of businesses, authorities, employers who discriminate against people with disabilities. The searchable online database monitors the extent of discrimination countrywide.

Past Projects

 

With the law as a tool  In October 2015 our project application was finally approved by the  Inheritance Fund after three years of revisions in consultation with the Fund’s administrators. The project was preceded by a pilot study, also with financial support from the  Inheritance Fund, which concluded that the Swedish disability movement was ill prepared to tackle the discrimination that people with disabilities face. The three-year project aims at improving the understanding of Swedish and international anti-discrimination legislation and legal praxis on the part of disability organizations, the legal community and the public, and at promoting the use of law and legal case work as tools in combatting structural discrimination.

Personal Assistance Tips The three-year project, with financial support from the Inheritance Fund (Arvsfonden), started in January 2013 and ended in December 2015, yet its activities continue. The project collects, documents (by text, photos, video or drawings) and spreads the tips, tricks and examples that assistance users and their assistants have developed for many assistance situations. 

Project Fashion Freaks, 2005-2007 and 2010 - 2015, funded by the Swedish Inheritance Fund (Allmänna Arvsfonden) develops fashionable clothing patterns for people with disabilities that can be downloaded from our website and adapted to individual needs.

In the project Training as a Vehicle to Employment, 2006-2007, funded by the European Union, ILI and Independent Living organizations from 8 European countries worked with government agencies in a dozen European countries to ensure that their trainee and internship programs were also open to qualified people with disabilities.

The database Vacation Home Exchange had objects from around the world enabling people with extensive disabilities to swap their homes for vacation purposes. The Personal Assistant Referral service matched assistance users and prospective assistants for visits and travel abroad.  These services were in use from around 1998  to 2005.

Project Radio Independent Living, 2004-2006, funded by the Swedish Inheritance Fund (Allmänna Arvsfonden) produced audio documentaries and commentaries on Independent Living issues, such as de-institutionalization, disability culture, sexuality and identity for online listening.

In the project European Center for Excellence on Personal Assistance, ECEPA, 2004,  funded by the European Union, ILI and Independent Living organizations from 7 European countries developed, among other things, a “Model National Personal Assistance Policy", coordinated and edited by ILI, and translated into a number of languages.

Study and Work Abroad for All, 2003-2005, a project funded by the Swedish Inheritance Fund (Allmänna Arvsfonden) compiled information about over 1,100 universities and NGOs accepting persons with disabilities as students and trainees, respectively in over 60 countries.

In the project Contributing to Equality through Independent Living (CEIL), 2002-2003 we were part of an international consortium of organizations that disseminated, with support from the European Union, examples of good practice in the field of Independent Living for disabled and older people to Southern Europe.

Taxi for All, 2001-2003, a pilot project in Stockholm County, funded by the Stockholm County and VINNOVA tested whether a taxi-based system - at the same costs to taxpayers - can offer better mobility, flexibility and self-determination than the County’s present special transportation system for mobility impaired people. Taxi for All  is an outgrowth of ILI’s work in the Slovak Republic.

In KARMA, Knowledge and Augmented Reality Management Assistance, 2001-2003, a European Union Fifth Framework project, ILI joined an international consortium that developed a marketable product including hardware, software and interface with the healthcare system to assist families with brain-injured children to avoid hospitalization periods.

In project Personal Assistance Network, 1998-2000, with funding from the European Union and the Swedish Inheritance Fund (Allmänna Arvsfonden) ILI compiled a virtual library with legal texts, training manuals for assistance users, international examples of assistance delivery schemes, etc and developed interactive services, for example the first online assistant referral in Sweden. Read the English summary of the final project report here.

In 1997-1998 under contract by the European Union PHARE program and the Ministry of Social Affairs, Slovak Republic ILI designed and implemented a pilot project for personal assistance with direct payment following the STIL model as well as a pilot project for a mainstream accessible taxi system including a subsidy scheme for disabled patrons.  

ILI can look back to a long experience with projects that promote self-determination in every-day life for persons with extensive disabilities, in particular, personal assistance users. In the 1980s the Institute's Director took the initiative to STIL, the Stockholm Cooperative for Independent Living, which developed the first user-run assistance cooperative in Europe and became the model for the Swedish Personal Assistance Act of 1994 (LASS).

Organization

We are a not-for-profit private foundation run and controlled by persons with disabilities. With roots in the Swedish and international Independent Living movement the Institute is a duly Swedish registered not-for-profit foundation. The majority of our employees has a disability.

The following persons serve on the board:

  • Adolf Ratzka, Stockholm, In 1983 Adolf imported the Independent Living-philosophy to Scandinavia, founder of  STIL and its chairman until 1995, ENIL's first chairman 1989-1992, founded the Independent Living Institute in 1993 together with Rolf Bergfors (GIL), director of  the Independent Living Institute from 1993 to 2017. Adolf is chairman of the board.

  • Bengt Elmén, Stockholm, author, debater and lecturer, board member of STIL, Director of STIL 1987-1991.

  • Gilla Andersson, , deputy to Bengt Elmén, board member of STIL since 2006 and its vice chairman since 2016, chairman of the Rheumatism Association Lidingö since 2016.

  • Jamie Bolling, Härnösand, is a human rights defender with a focus on disability issues, operations manager for ENIL 2009 - 2017, former member of the MP party board and  STIL board, vice chairman of MyRight's board.

  • Judith E. Heumann, Washington DC, USA, is one of the leading internationally renowned Independent Living activists known for, among other things, her role in the movement's 28-day occupation of the Federal Building in San Francisco, which forced the federal government to sign Section 504 of the Rehabilitation Act of 1973; her work for the Center för Independent Living Berkeley (where she laid the foundation for today's Disability Rights Education and Defense Fund); initiator and operations manager, together with Ed Roberts, for the World Institute on Disability; Assistant Secretary for the Office of Special Education and Rehabilitation Services, US Department of Education 1993-2001; World Bank Group First Advisor on Disability and Development 2002-2006; Director, Department of Disability Services, District of Columbia; Special Advisor on Disability Rights for the US State Department 2010 - 2017.

  • Kapka Panayotova, Sofia, Bulgaria, Chair of ENIL, the European Network for Independent Living, Founder and Director of the Center for Independent Living, Sofia.

  • Miro Griffiths, Leeds, UK, is an employee of Leeds University and teaches disability law issues; between 2015 and 2018 employed as a researcher at Liverpool John Moore's University; received in 2014 an MBE award (Member of the Order of the British Empire) in recognition of services to disabled people; is a member on Research Ethics Committee for the Faculties of Business, Environment and Social Sciences; member of the Liverpool City Region Fairness and Social Justice Advisory Board; member of the International Independent Living Research Network.

History

In 1989, at the European Parliament in Strasbourg, over 80 persons with extensive disabilities participated in a 3-day conference on personal assistance and founded ENIL, the European Network on Independent Living.Two of the Independent Living grassroots organizations represented at the Strasbourg meeting, STIL, the Stockholm Cooperative for Independent Living, and GIL, the Gothenburg Independent Living coop, together founded the Institute on Independent Living 1993 (the name was changed to Independent Living Institute in May 2003) with the purpose of spreading the Independent Living philosophy and approach within Sweden and internationally. In 2008 Independent Living celebrated its first twenty-five years in Sweden with a conference.

Staff

What You Can Do To Support Us
Donate your time. Contact Jamie or Linda.