Independent Living Institute (ILI) Annual Report 2007

Internet publication URL: www.independentliving.org/docs1/ilanrp2007.html

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Independent Living Institute (ILI),
Annual Report 2007

Continuing Projects

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 Disability 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.

Personal Assistant Referral, whose purpose is to facilitate international travel for personal assistance users.

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

The goal of the project Cash Payments for Assistive Products is to develop a feasible model for direct payments for assistive technology which would enable persons with disabilities to choose and purchase the products they need. In a first phase we compile and analyze examples of good practice and comparative studies about similar systems existing in other countries. The project is coordinated by Petra Jonsson who works as a part-time volunteer.

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 2007 the library received about 115,000 unique visitors.

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 478,000 unique visitors during 2007 (an increase from 454,000 in 2006). Many appreciative comments were received about the full-text virtual library and other online services.

Projects Started During the Year

The new service Assistanskoll (in Swedish only), financed for three years by The Swedish Inheritance Fund, helps assistant users, their relatives, municipal officials as well as people that work as a personal assistant compare and choose personal assistance providers. Information about providers includes what is included in their service, conditions and costs not included in the provider’s advertising, e.g. salary levels and union agreements. At the end of 2007, 100 assistance companies and assistance cooperatives had joined Assistanskoll and provided descriptions of themselves.

A number of assistance users wrote articles on different aspects of personal assistance, from choosing the form for assistance - municipal, company or cooperative as assistant employer or to act as an employer one’s self - to recruiting and directing assistants.

In the fall of 2007 Kenneth Westberg began working as a freelance journalist for Assistanskoll. He interviewed assistance companies regarded as important due to their size or nature of services and wrote articles on amongst other things tasks of assistants, the role of officials implementing the “Act concerning Support and Service for Persons with Certain Functional Impairments” (LSS), and on the law regulating working hours. In addition, the project tries to monitor the work of the LSS Committee.

In the two-year PT access project 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 with 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.

Projects Finished During the Year

Training as Vehicle to Employment, was a transnational partnership project with ILI as lead partner and 8 Centers for Independent Living in Finland, Poland, Lithuania, Latvia, Ireland, Germany, Bulgaria, Spain and Greece. The two-year project started in January 2006 and was financed by the European Commission under grant agreement VS/2005/0673 and STIL, the Stockholm Cooperative for Independent Living.

The project aimed at improving disabled people’s opportunities to enter and establish themselves in the labour market by insuring that the trainee programs and internships of federal government agencies and organisations are open and available for everyone. The project results showed amongst other things that knowledge was deficient in federal government agencies about how to make internships accessible to all. An information booklet was produced within the project that aims to give practical advice and support in this area. The booklet was distributed to a large number of federal government agencies and organisations in Europe.

Project Fashion Freaks developed fashionable clothing patterns for people with disabilities that can be downloaded from our website and adapted to individual needs by way of

  • a number of base patterns with instructions on how to adapt them to your individual measurements
  • information about useful materials and special products and where to find them
  • a databank with tips and solutions from other wheelchair users
  • a network of persons in the same situation for sharing questions and ideas

The project was supported by the Swedish National General Inheritance Fund (Allmänna Arvsfonden). The project coordinator was Susanne Berg. Meagan Whellans also worked on the project. The project website in English was written about in several articles in written and electronic media in Sweden and internationally.

Participation in Events

  • ILI gave two lectures during the year in the course “Individual Environmental Design” at Karolinska Institutet, Neurotec, Division of Occupational Therapy, led by Ph.D. Candidate Elisabet Lagerkrans.
  • 5-6 December: discussions with representatives of The European Network on Independent Living and BOL about the ECEPA project, on the personal invitation of the EU Commission on International Day for Persons with Disabilities, Charlemagne Conference Centre, Brussels.
  • 29-30 November: lecture series at ULOBA’s education days with the theme IL history and ideology, organised by ULOBA, Oslo, Norway.
  • 14-15 November: lecturer and workshop leader at the conference „Selbst in der Hand! Persönliches Budget und selbstbestimmtes Leben” (“In your own hands through personal budget and self-determined living”) with the theme “Persönliche Assistenz als arbeitsmarktspolitisches Instrument” (Personal Assistance as labor market policy instrument”) and “Die politische Umsetzung der Mustergesetzgebung zur persönlichen Assistenz” (“Implementation of the model national personal assistance policy”) organised by Alpen-Adria-Universiy Klagenfurt, Austria.
  • 22 October: keynote speech at the conference in commemoration of 25 years since the first Spanish Law for Persons with Disabilities of 1982 with the theme “From patient to citizen and customer” and organised by the Catalan Party Convergéncia in Unió, Barcelona, Spain.
  • 5-6 June: lecture at the conference “15 Years of Independent Living” in Dublin, Ireland organised by The Center for Independent Living Dublin with the theme “The Swedish STIL Model for Personal Assistance” and “Definitions of Personal Assistance and the Importance of a National Personal Assistance Policy.”
  • 1 June: opening speech at a seminar organized by STIL and ILL in ABF-huset, Stockholm on the Americans with Disabilities Act and its implications for Sweden with Dr Steve E. Brown, University of Hawaii and lawyer Paul Lappalainen.
  • 23 May: lecture at lecture series “Menschen mit Behinderung Inklusion – vom Schlagwort zum Menschenrecht” (People with disabilities: inclusion – from slogan to human right”)  on the theme “Vom Patienten über den Wohlfahrtsempfänger zum Bürger – Implikationen der BürgerInnenperspektive für die Sozialpolitik” (“From patient and welfare recipient to citizen: implications of the citizenship model for social policy”)  organized by Institut für Österreichische Rechtsgeschichte und Europäische Rechtsentwicklung Karl-Franzens-University Graz, Austria.
  • 14 May: lecture in Munich, Germany as part of the panel discussion „Gleichwertige Teilnahme am Leben durch persönliche Assistenz = Assistenzleistungsgesetz“ (“Equal participation through personal assistance: legal entitlement to payments for personal assistance services”) with the theme “Erfahrungen mit der schwedischen Assistenzreform von 1994” (“Experiences with the Swedish Personal Assistance Act of 1994”) organized by Netzwerkfrauen-Bayern in Kooperation mit dem VbA – Selbstbestimmt Leben e.V.
  • 3-4 May: plenary lecture titled “The Future of Independent Living in Sweden” at the “European Year of Equal Opportunities” event in Alicante, Spain organized by The European Network on Independent Living, ENIL.
  • 29 March: lecture on disability issues at the seminar “The Labour Market for Disabled Youth” organized by Nordic Cooperation on Disability, and its labour market network in cooperation with The Swedish Ministry of Employment.
  • 22-23 March: lecture at the Vienna, Austria conference „Vom schönen Schein der Integration – Menschen mit Behinderung am Rand der Leistungsgesellschaft” (“About the beautiful appeaarance of integration – people with disabilities at the competitive society’s margin”) with the theme „Erfahrungen mit der schwedischen Assistenzreform“ (“Experiences with the Swedish Personal Assistance Act of 1994”) published as a book chapter and organized by Verein LOK – Leben ohne Krankenhaus.
  • 20-21 March: lecture series in Bratislava, Slovakia on “personal assistance policy,” “principles of personal assistance,” “the Swedish example of cash contributions for personal assistance” and follow-up on ILI’s task eight years ago for the Ministry of Social Affairs (two pilot projects on personal assistance and with accessible vehicles in normal taxi traffic) as well as discussions with the State Secretary at the Ministry. This was organised by the Ministry of Social Affairs, Family and Labor, Slovakia.
  • 31 January: guest speaker at the German Disability Ombudsman New Year’s reception in Berlin.
  • 18-19 January: participation, after being personally invited, in the meeting of the Disability and Bioethics Working Group, Benjamin N. Cardozo School of Law, Montefiore Medical Center, Division of Bioethics and the Center for Ethics at Yeshiva University, New York. Adolf Ratzka was not able to travel to the event and instead participated in part of the conference by telephone.

Invitations that Could Not Be Accepted

  • 27-29 May: lecture at the international cross-disability conference on self-determination and system change i Detroit, USA, organized by the Center for Self-determination.
  • 7 September: personal invitation to attend the Independent Living Global Summit meeting to found a Global Independent Living Network at the Disabled People International’s Congress in Seoul, Korea.
  • 20 April: attendance as a participant in the Internet and telephone conference “Fireside Chats – pan-Canadian discussions” on the built environment and health - building norms and human rights, organized by CHNET, University of Ottawa, Canada.

Publications

Adolf Ratzka continued to be coauthor of the chapter on personal assistance in WHO’s new handbook on Community Based Rehabilitation, expected to be published in 2008.

Interviews

  • 30 November: Norway’s Television on accessibility in Oslo compared to other cities internationally.
  • 6 August: Cepro Management Consultants on ILI’s project Taxi for everyone which led to Wheelchair Taxi and will reappear according to the Stockholm County Council
  • 15 June: University for Social Work Nordwestschweiz, Olten, Switzerland on personal assistance politics and relevant research projects in European countries for the Swiss federal government Social Insurance Department’s work for a Swiss personal assistance policy.
  • June: several interviews by e-mail and telephone by Dr. Lita Jans, Center for Personal Assistance Services, San Francisco State University for there investigation of user cooperatives for personal assistance. The “Personal Assistance Services Cooperatives” report was published in November 2007 by The Center for Personal Assistance Services, University of California San Francisco (www.pascenter.org/documents/FINAL Report_PAS_Coops.php) for the Office of Disability Employment Policy (ODEP), U.S. Department of Labor.
  • 24 February: the French periodical Faire Face for their special edition on the Swedish model.
  • 2 February: Nuno Caldas Coelho, Royal College of Art, London on development of Design for All in Sweden.
  • 12 January: Stefan Pelc, Funka Nu AB on transportation service for disabled people for an article on the Funka portal.

Study Visits at ILI

  • 10 October: Prof Dr Dorothea Lage, University for Social Work Nordwestschweiz, Olten, Switzerland on Independent Living, personal assistance and work.
  • 28 August: 12 people from persönliche assistenz gmbh, www.persoenliche-assistenz.net/ an assistance user cooperative (that was founded modeled after  the Wiener Assistenzgenossenschaft WAG which in turn was patterned after  STIL) about different models for assistance users.
  • 27 June: Gemeinnützige Werkstätten Cologne, (municipal sheltered workshops), www.gwk-koeln.de by 14 people that visited Swedish government agencies, operations and projects on personal assistance and employment.
  • 15 May: UNIISON, a UK  union  for public employees within administration, care, police, and schools with the purpose of studying Swedish solutions to cash payments for personal assistance.
  • 7 February: TIBO consulting, commissioned by Uppsala Municipality with focus on promoting Independent Living for the population of the municipality by, e.g. better access to services via the Internet.

Other Professional Contacts

Adolf Ratzka was a member of the editorial council for the periodical “Disability and Society“ and Distinguished Fellow for the periodical “The Review of Disabilities Studies,” Center on Disability Studies, University of Hawaii.

As a result of participation in the June conference in Dublin (see above) Adolf Ratzka was in contact via e-mail and telephone with CIL Dublin, Ireland regarding their work to prepare a plan and strategy for a personal assistance co-operative started in September 2008.

As a result of participation in conferences and meetings with assistance user groups within Foro Vida Independiente and politicians, particularly in Catalonia, Spain, Adolf Ratzka had intensive contact via e-mail and telephone with assistance users in Barcelona working on a proposal to continuation and expansion of the current pilot project on personal assistance in Catalonia.

Representatives of the Center for Independent Living Jerusalem and Stars of Hope, an organization of disabled women in Ramallah, Palestine, were in contact with the Independent Living Institute to plan cooperation in the region on training on Independent Living and personal assistance.

ILI Staff

Susanne Berg continued in her capacity as part-time project coordinator of Fashion Freaks.
Philip Day worked part-time with projects Assistanskoll, Disability Ombudsman Reporting Service (HO anmälningstjänst), Training as Vehicle to Employment, and maintained catalogues on our website of links, international disability organisations, and Study and Work. He also did programming work for the Spinalistips project.
Sebastian Ferrer worked on the Assistanskoll project and parts of ILI’s economic administration on a volunteer basis and served as one of ILI’s two authorized signatories.
Hans Filipsson
worked part-time maintaining and upgrading the Disability Ombudsman Reporting Service (HO-anmälningstjänsten).
Miles Goldstick continued to maintain the technical aspects of our website on a part-time basis.
Veronica Johansson
worked half-time for part of the year with ILI’s administration and bookkeeping.
Petra Jonsson continued to work as a volunteer with project Cash Payments for Assistive Products.
Algren Morgan
began as an administrator for the Assistanskoll project.
Adolf Ratzka
continued as Director on a part-time basis.
Kenneth Westberg
began working in the fall as a freelance journalists for the Assistanskoll project.
Nicoletta Zoannos
worked full-time coordinating both the international partnership and the Swedish part of the EU financed project Training as Vehicle to Employment.

Sponsors

We gratefully acknowledge support from

ILI’s Board

Bente Skansgård

 

Kapka Panayotova

 

Kalle Könkkölä

 

Adolf Ratzka

ili Project:

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