Independent Living Institute Annual Report 2023

Independent Living Institute.  2024.  Independent Living Institute Annual Report 2023.

ANNUAL REPORT 2023

The Independent Living Institute (ILI) works to promote opportunities for people with disabilities for more personal and political power, self-determination, full participation and equality through information, education, advocacy and project activities.

Independent Living is a movement of people with disabilities, an ideology and a philosophy with basic principles of self-determination, equal opportunities, equal rights, self-respect, full participation and empowerment. Independent Living is based on rights. In particular, Article 19 of the Convention on the Rights of Persons with Disabilities and its General Comment No. 5, that defines the right to self-determination and participation in society and the right to choose where and with whom someone wants to live, as well as the right to public services and personal assistance. ILI has worked for these rights for 30 years. Anniversary celebrations are planned for 2024.

In 2023, ILI endeavoured through its work in several projects to achieve its goals and visions. These projects are described in this document. All major projects have their own websites, Facebook pages as well as publishing regular newsletters.

The structure of the annual report is as follows: 1) Project activities, 2) other ongoing activities and information about the institute, including lists of events, news and subject articles, responses to government reports, etc. carried out or produced during the year, as well as office staff, board members and financing.

PROJECT ACTIVITIES

Assistanskoll

Assistanskoll provides information, analysis and advice to personal assistance users, their families and personal assistants. It helps with the choice of assistance provider. Personal assistants are informed about salary levels, collective labour agreements and terms of employment. Assistanskoll keeps the general public updated on the changes that are taking place in the legislation concerning personal assistance, the political developments around assistance, case law and market developments. LSS officials can provide information to assistance users and their families via Assistanskoll.

Assistanskoll was founded in 2007 with funding from the Swedish Inheritance Fund that lasted until 2010. Since then the web service has continued to grow in content and reach.

At the end of 2023, 166 providers participated in the Assistanskoll comparison service. (163 non-municipal and 3 municipal) In addition to this, 38 providers who have not provided information are listed due to their size. Assistanskolls website had about 660,000 page views in the year 2023 (600,000 in 2022) and the number of website visitors was 350,000 (compared to 300,000 in 2022). This exposure makes Assistanskolls website and newsletter interesting platforms for the advertisers that now cover Assistanskoll's running costs.

Assistanskoll's newsletter edited by Kenneth Westberg is published approximately once a month and has achieved a market-leading position in monitoring the development of personal assistance in Sweden. Our articles and other information are often quoted in other media. The newsletter reaches approximately 4,000 email addresses. The target groups are assistance users, their relatives and assistants, assistance providers, disability organisations and their publications, trade unions, LSS administrators, officials at authorities and politicians at all levels.

Assistanskoll has a large number of information pages and guides. For example, our comparison of collective wage agreements, the guides: Work as an assistant, Compensation for inconvenient working hours for personal assistants, What is the salary of personal assistants? Recruiting personal assistants, Arrange your own assistance and Prepare for your assistance assessment are all well-visited pages.

Assistanskoll has a webpage with comprehensive statistics on the number of assistance recipients, grants/refusals, costs of assistance and how many assistance recipients have chosen private companies, municipalities, cooperatives, etc.

Examples of what has happened at Assistanskoll during the year:

  • We have written about what has happened since the legislative changes proposed in the government report “Strengthened right to assistance” were introduced on 1 January 2023.
    In particular, about how the introduction of the standard age-based parental deduction has been interpreted by the Swedish Social Insurance Agency in such a way that it has become more difficult to be granted an assistance allowance.
  • We have followed how the stricter application of the EU's working time regulations has affected personal assistance users and their assistants. Particularly regarding 24 hour shifts.
  • 127 news articles about personal assistance have been published on the website.
  • We have updated and added new questions to the assistance provider comparison service
    to keep up with changes in legislation.
  • One columnist during the year, Thomas Juneborg, has written for Assistanskoll.

Disability Rights Defenders (DRD)

Disability Rights Defenders is a network of individuals and organisations interested in rights and legislation concerning people with disabilities. The project was funded by Bente Skansgård's Independent Living Fund. The overall aim of the network is to promote access to the rights of persons with disabilities on an equal basis with others. The network disseminates and deepens legal expert knowledge about the rights of people with disabilities, disability rights organisations, lawyers and law schools. By mutually sharing legal knowledge, the ability to use the law as a tool is strengthened. We do this by bringing people together in our facebook group 'Disability Rights Defenders'.

In 2023, the Facebook group had 2,538 members from about 100 countries. Members share their experiences, methods and advice on how to use the law as a tool. The content of the facebook group is summarised in a  newsletter once a year. Webinars have proven successful in disseminating information about DRD but also about rights and legal processes. DRD published 9 articles on the fight for personal assistance in Europe in connection with the newsletter sent out in September 2023. 

DRW/DHR on integration of migrants with disabilities

The project, Integration of migrants with disabilities, is a cooperation with DHR funded by the Grant Foundation (Bidragstiftelsen). It started in October 2021 and ran until September 2023. The aim of the project was to promote the integration of migrants with disabilities through knowledge development and exchange of experience regarding the dual competence: disability issues and integration issues, and through the target group's inclusion in civil society. A checklist/toolbox was produced on how organisations can increase diversity by including more migrants with disabilities in their activities.

RTA - Mutual Integration and the Right to Work

In April 2022, the project started Mutual integration and the right to work (RTA), with support from the Swedish Inheritance Fund. The project builds on the experiences from the previous project DRW-Disabled Refugees Welcome, but now with a focus on work.

The purpose of the project is to improve the integration process, as well as increase employability among migrants with disabilities and to overcome the barriers that exist for the target group to enter the labour market on equal terms with others. 

The project supports the target group in their daily lives to reach increased opportunities for employability and employment in collaboration with the target group and local networks, labour market actors, disability rights organisations and others. Methods include outreach, business intelligence, networking, mobile receptions, etc.

The project has, among other things, conducted interviews with members of the target group, as well as  work cafés, theme days, study visits, etc. to increase the competence of the target group and the project's partners working in the employment field. Counselling and peer support are ongoing. Training courses were planned and delivered. The project collects stories from the participants regarding their own experiences.

In the run-up to the Swedish Forum for Human Rights in November, several publications were printed and disseminated. These are on the publications page.

The website had 8,100 visits in 2023 and the Facebook page had 548 followers. The website and Facebook page for Disabled Refugees Welcome were redesigned at the beginning of the project and are now used by the Right to Work project as well. During 2023 eleven newsletters were sent with 74 news articles and notices, etc. Information material has been produced and disseminated to the project's target audience and various actors in the field.

TRIPS

The Independent Living Institute (ILI) participated in an EU project called TRIPS = TRansport Innovation for disabled People needs Satisfaction . The aim of the project was to improve transport systems for people with disabilities in Europe. ENIL, the European Independent Living Network, was the partner and ILI was a sub-partner with Stockholm as the project area. 7 European cities were involved in the project: Bologna, Brussels, Cagliari, Lisbon, Sofia, Stockholm and Zagreb.

TRIPS brought together different people in so-called "co-production groups" in each city. In these groups, people with disabilities, transport providers, municipal managers and other people involved in the transport sector work together to jointly find solutions for how transport can be made more accessible. Several collaborative projects have been sought through Lund University. Among other things, a K2 project is now underway for further development in the area. The TRIPS project lasted for three years and ended on 31/1 2023.

OTHER INFORMATION ABOUT THE ACTIVITIES AND THE INSTITUTE

The Disability Discrimination Reporting Service, the Library, the DI-Project, Disabled Refugees Welcome, Fashion Freaks, The Law as a Tool and Article 19 as a Tool, the PA-Network and PA-Tips

The Disability Discrimination Reporting Service helps individuals and organisations to report cases of discrimination to the  Non-Discrimination Ombudsman and, where applicable, the respective municipal authority. The service has been running since the late 1990s. In 2023, the website had about 2,500 visits by about 2,000 people. People completed  14 reports of discrimination.

Library: ILI's online full-text library offers authors the publication, exposure and secure archiving of their work, such as articles in scientific journals, reports, handbooks and lectures on Independent Living and related topics. For example, we have a number of bibliographies, which the British scholar M. Miles asked us to publish, on the treatment of people with disabilities in Asian cultures. The library also publishes information about personal assistance in Sweden, as well as information about the situation for assistance users in other countries, through articles and summary texts in different languages. At present, there are over 800 documents in the searchable library, of which the majority are in English, about 200 in Swedish and about 100 in other languages, mostly German, French and Spanish. Despite the fact that much of the material is many years old, we still receive appreciative comments from readers in different countries. Communication with readers also includes advice based on the content of the articles.

The DI project - a publication on de-institutionalisation: With funding from the Grant Foundation, ILI has for the last two years been running a project as part of the struggle against institutionalisation. The project produced a publication in Swedish and English, "The freedom to decide where you want to live: de-institutionalisation." The publication describes Sweden's history and the process of closing institutions. The publication also describes the importance of support measures according to LSS and Independent Living - the movement's work and development of personal assistance. This work was important for the Swedish reform at the time of the closure of the major institutions, as the support was regulated by the LSS reform and by personal assistance. The publication also highlights today's challenges with risks of institution-like working methods and re-institutionalization. A first version of the publication in Swedish was launched in 2022, and in 2023 an updated version and translation into English was made. The publications are available in printed format and are also published digitally. The project was formally completed in December 2022, but follow-up efforts were carried out in 2023, including a launch seminar on 5 May. In connection with this, a news article was published and the publications have subsequently been disseminated to various stakeholders in Sweden and in other countries.

Disabled Refugees Welcome is an integration activity that continues on a smaller scale after the project financed by the Swedish Inheritance Fund has ended, this partly through new project collaborations. DRW aims to develop methods that create better conditions for the reception and integration of newcomers and migrants with various disabilities. During the course of the project, the needs of the target group were documented and a number of activities were developed that in the future may become a natural part of the Swedish reception system. DRWs Method material: the information manual "Pathways to mutual integration" and the method manual "Welcome whoever you are", bring together DRW's conclusions, the needs of the target group, analysis of the situation and measures needed to achieve mutual integration. These have been disseminated during the year for use by various actors working with DRW's target group. Contact with the target group is maintained within ILI and people who have contacted us for support/advice have been referred either to other actors or to the Right to Work project, depending on the matter. The website for Disabled Refugees Welcome is now used by the Right to Work project, which has its origins in the DRW project.

Fashion Freaks – your online fitting room is all about fashion, clothing and vanity from a seated perspective. Fashion Freak's basic idea is that people in wheelchairs are just as vain as everyone else. We are all unique individuals with the right to our own taste and style. At the same time, it is almost impossible to find stylish clothes sewn for "sitting" shapes. Fashion Freaks is a wardrobe filled with customized basic patterns, sewing instructions, descriptions of how to customize ready-made clothes and much more - all to suit wheelchair users. Fashion Freak's website, which is available in both Swedish and English, previously had project support from the Swedish Inheritance Fund and continues to have many visitors to the site, about 150 people per day in 2023, half of whom are from Sweden.

The law as a tool and Article 19 as a tool were previously Inheritance Fund projects, whose activities have continued to some extent even after that. The law as a tool worked to increase the disability movement's access to legal expertise in order to better meet the rights of people with disabilities. The method was to use the law as a tool and case law to work against negative discrimination and structural discrimination. The project lives on, among other things, through the website, which has subsequently been further developed through the project Article 19 as a tool. As a result of the work done in the Law as a Tool project and Article 19 as a tool, several organizations still refer to ILI for legal advice.

PA-tips.se  (Personal Assistance Tips, formerly Assistance Tips) shows a large collection of tips, tricks and examples (with text, images, video or drawings) that assistance recipients and their assistants have developed for various assistance situations. The project previously had project support from the Swedish Inheritance Fund.

Arranging conferences/seminars/study visits/educational activities and participation in other actors' events

During the year, a number of conferences, seminars, study visits and educational initiatives were arranged. ILI's staff also participated in events organised by other organisations/actors. A selection is listed below:

Publications, interviews, consultation responses and appearances in various media

During the year, ILI's staff published news articles, text, images and video material in various media.

Interest policy initiatives and publications 2023:

Collaboration with the National Knowledge Centre for Deafblind Issues (NKCDB)

Since January 2021, ILI has been part of an expert council organised by NKCDB where ILI, through a consulting assignment with Ola Linder, has contributed with legal expertise in the role of primarily supporting the regions' curators in legal issues linked to current legislation in the area. The assignment is also about developing the understanding of legal rights issues in general in relation to people with disabilities.

Collaboration with Disability Rights Defenders Sweden (DRDS)

The association With the law as a tool (MLSV) was formed in 2015 on the initiative of ILI and others and is run under its own auspices as a member-based non-profit association. The association's name was changed to Disability Rights Defenders Sweden (DRDS) at the annual meeting in 2020 after inspiration from ILI's project Disability Rights Defenders. The association pursues discrimination cases related to disability, if necessary in court. In addition to this, the association informs about human rights for people with disabilities, provides advice and information about disability discrimination. ILI and DRDS collaborate, among other things, through the dissemination of information as the DRDS website is embedded in ILI's website for the Law as a tool.

Collaboration with the disability movement in Sweden and internationally

Through our long joint work with other organisations to expand and defend our civil rights and increase our concrete opportunities to live like others, ILI has built up good contacts within Swedish civil society in our area. With this broad network, we have been able to easily find co-applicants for project applications and for other collaborations. Increasing cooperation is taking place between organisations in the run-up to consultation statements and other political initiatives. We also have good international contacts through our long-term involvement in the international Independent Living movement within Disabled People's International and ENIL, the European Network for Independent Living, as well as through many collaborative projects and mutual exchanges of experience.

Over the years, ILI has become an international information and contact agency, which has helped us expand our network and deepen our cooperation with other organisations. In this way, together with many other actors, we have been able to contribute to an increased pace of development in the area of disability in a number of countries in terms of policies for accessibility, personal assistance, technical aids and work. The questions may relate to projects, literature sources, contact with other organisations and experts, or concern individuals who need support and advice. The Independent Living Institute continues to receive questions about study visits where we support with contacts to interesting organisations to visit.

Examples of networks/cooperation groups regarding disability issues that ILI has participated in:

  • National collaboration for disability rights issues led by the Church of Sweden.
  • National network on issues concerning Ukrainians with disabilities led by Funktibator.
  • National network on issues affecting migrants with disabilities, which is also led by Funkibator in collaboration with the Swedish Migration Agency and the Swedish Agency for Participation.
  • The Human Rights Network led by the Human Rights Fund.
  • The Human Rights Network led by the Institute for Human Rights.
  • The team of advisors led by the Disability Rights Office at Funktionsrätt Sverige.
  • Reference groups that ILI has been a part of:
  • The Disability Rights Office- Disability rights.
  • Nothing About Us Without Us - The Human Rights Fund/Disability Historical Society.
  • Our voices must be heard - Funktionsrätt, Begripsam, Handikapphistoriska föreningen.
  • The project with ULOBA on research on self-determination and personal assistance.

During the year, ILI's Chairman of the Board, Adolf Ratzka, has been:

During the year, ILI's Executive Director, Jamie Bolling, has been:

ILI staff

In 2023, the workforce included a rich variety of skills and experiences, several with personal experience of disabilities, an even distribution between genders, a wide spread between ages and with origins in different countries. In 2023, ILI's staff consisted of the following people, most of whom have worked part-time, some only for short periods:

  • Algren Morgan, project co-worker in Assistanskoll and the Disability Rights Defenders project.
  • Antwan Zolomyan, project co-worker in the Right to Work project.
  • Erik Tillander, journalist and project co-worker in Assistanskoll and the Right to Work project.
  • Jamie Bolling, Executive Director and Project Manager for the Right to Work project (shared with Tiina Nummi-Södergren from October 2023), and Project Manager for the Disability Rights Defenders project from October 2023.
  • Kenneth Westberg, journalist and project manager for Assistanskoll.
  • Linda Robertsson, Office manager incl. administration, personnel and finance.
  • Mari Siilsalu, lawyer and project co-worker in the Right to Work project.
  • Maria Johansson, Project Developer, October - December.
  • Nora Eklöv, project co-worker in the Right to Work project.
  • Philip Day, webmaster, database programmer and project co-worker in the Assistanskoll and the Right to Work project.
  • Rahel Abebaw Atnafu, project co-worker in the DRW/DHR project and the Right to Work project.
  • Tiina Nummi-Södergren, project manager for the Disability Rights Defenders project until September. Project co-worker in the Right to Work project, from October shared project management with Jamie Bolling.

 

In addition, work has been carried out on a consultancy basis and through occasional short-term employments/freelance assignments. Consultancy assignments that ran for longer periods were carried out by:

  • Ola Linder, with contributions to the NKCDB mission.
  • Elena Quiñonez and Sebastian Ferrer, Accounting Services.
  • Suzanne Elmqvist, with contributions to the Right to Work project.

During the year, the following people have been at ILI as part of their education or internship:

  • Marjan Aslanifard, 14/10 2022 - 20/1 2023.
  • Gina Schmitz, 14/4 - 16/6.
  • Kirsty Leech, 11/9 - 10/10.
  • Ashraf Frugh, 9/11 - 31/12.
  • Nelly Hölter, 13/11 - 26/1.
  • Catalina Fipper, 13/11 - 31/12.
  • Antwan Zolomyan, 30/10 - 23/12.

Financing

ILI would like to thank:

Composition and meetings of the Board of Directors

Adolf Ratzka, Stockholm, imported the Independent Living philosophy to Scandinavia in 1983, initiator of STIL and its chairman until 1995,  ENIL's first chairman 1989-1992, founded GIL together with Rolf Bergfors . Independent Living Institute and was the director from its inception in 1993 until September 2017. Adolf is the Chairman of the Board.

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

Christine (Dinah) Radtke, Germany. Founder and President of the Center for Independent Living, Erlangen, Germany;  member of the board of directors of the German national association ISL; Vice President of Disabled People International, debater. Elected on 16 June 2023.

Jamie Bolling, Härnösand, is a human rights defender with a focus on disability issues, Executive Director of  ENIL 2009 - 2017, former member of STIL and of MP's party board, Chairman of MyRight's board. Jamie resigned from the ILI  board in June 2023.

Jonas Franksson, Stockholm, is a human rights defender with a focus on disability issues, chairman of STIL, DRDS, and others.

Judith E. Heumann, Washington DC, USA, was one of the foremost internationally known Independent Living activists for her role in the movement's 28-day occupation of the Federal Building in San Francisco that forced the federal government to sign Section 504 of the Rehabilitation Act of 1973; her work for the  Center for Independent Living Berkeley (where she laid the foundation for today's Disability Rights Education and Defense Fund); initiator and director, with Ed Roberts, of the World Institute on Disability; Assistant Secretary of the Office of Special Education and Rehabilitation Services, U.S. Department of Education 1993 - 2001; World Bank Group Principal 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. Judith passed away in March 2023. Read Adolf Ratzka's words Judy Heumann has left us.

Miro Griffiths, Leeds, UK, is employed by the University of Leeds and teaches disability rights; between 2015 and 2018 employed as a researcher at Liverpool John Moores University; received an MBE (Member of the Order of the British Empire) in 2014 for work for people with disabilities; is a member of the British Sociological Association for disability issues, a member of the Equality and Human Rights Commission Disability Advisory Committee; member of the Liverpool City Region Fairness and Social Justice Advisory Board; member of the International Independent Living Research Network.

Rosangela Berman Bieler, USA/Brazil. Founder and President of the Centro de Vida Independente de Rio de Janeiro, Past President of the Inter-American Institute on Disability and Inclusive Development, former Special Counsel on Disability and Inclusive Development at the World Bank, former Global Lead on Disability at UNICEF. Elected on 16 June 2023.

In 2023, the Board held two meetings, on May 22 and June 16. In addition, contact has taken place via email, telephone and individual meetings.

 

2024-06

 

                                                     

Adolf Ratzka
Chair                     

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