Independent Living Institute Annual Report 2024

Independent Living Institute.  2025.  Independent Living Institute Annual Report 2024.

ANNUAL REPORT 2023

The Independent Living Institute (ILI) works to promote opportunities for people with disabilities to gain 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, 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 community services and personal assistance.

ILI has been in deep mourning since the summer of 2024 when our dear founder and chairman of the board, Adolf Ratzka, left us. Adolf was the heart and soul of our organization and his visionary leadership has shaped ILI into what it is today. His sudden passing has left a huge void, but his legacy lives on in the work we continue to do to promote independent living for people with disabilities. Adolf Ratzka was a pioneer in the field and his commitment to changing society will forever inspire us.

In 2024, 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 this annual report is as follows: 1) project activities, 2) other ongoing activities and information about the institute, including lists of events, news articles, consultation responses, etc. carried out or produced during the year, as well as personnel, board and funding.

PROJECT ACTIVITIES

Assistanskoll 

Assistanskoll provides information, analysis and advice to 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. For example, we monitor which parliamentary motions are made on the subject of personal assistance and how much the parliamentary parties want to invest in personal assistance in each party's budget proposal.

Assistanskoll was started in 2007 with support from the Swedish Inheritance Fund until 2010. Since then, the web service has continued to increase in content and reach.

At the end of 2024, 176 providers participated in Assistanskoll's comparison service. (172 non-municipal and 4 municipal) In addition to this, 39 organizers who have not provided information are listed. Assistanskoll's website had 604,000 page views in the year 2024 (660,000 in 2023). The number of visitors was 320,000 (compared to 350,000 in 2023). This exposure makes Assistanskoll's website and newsletter an interesting platform for the advertisers that now cover Assistanskoll's running costs.

Assistanskoll's newsletter,   edited by Kenneth Westberg, is published about 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 cited. The newsletter reaches approximately 3,700 email addresses. The target groups are assistance users, their relatives and assistants, assistance providers and their staff, disability organizations and their journals, trade unions, LSS administrators, officials at government agencies 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 shift work for personal assistants, What do personal assistants have in salary? Recruiting personal assistants, Arranging your own assistance and Preparing for your assistance assessment are all very well-visited pages.

Assistanskoll has a page with statistics on the number of people entitled to assistance, grants/rejections, costs for assistance and how many people entitled to assistance have chosen private companies, municipalities, cooperatives, etc.                                                                                                   

Examples of what has happened at Assistanskoll during the year:

  • We have continued to follow developments after the legislative changes on 1 January 2023, especially the development of the parental responsibility deduction that has been interpreted by the Swedish Social Insurance Agency in a way that makes it more difficult to be granted assistance allowance.
  •  We have been monitoring the debate on indexing the annual increase in the standard hourly assistance allowance, which the government has decided will take place from 1 January 2026.
  • We have followed the stricter application of the EU's working time regulations and how personal assistants are affected by this, for example in working day shifts.
  • People interviewed during are, for example, Bengt Westerberg (former party leader of the Liberal Party), Niklas Altermark (political scientist), Camilla Waltersson Grönvall (Minister of Social Services), Jonas Franksson (Chairman, STIL), Anders Lindberg (Political Editor-in-Chief, Aftonbladet), Birgitta Andersson (former Chairman of DHR), Danica Kragic (Professor, KTH), Helene von Granitz (Doctor of Medical Science), 
  • 146 news articles about personal assistance have been published on the website.
  •  We have changed the display on Assistanskoll so that advertisements are shown in blocks in the text instead of in the right column as before. This improves visibility, especially on mobile phones.
  • One columnist during the year, Thomas Juneborg, has written for Assistanskoll.

Disability Rights Defenders (DRD)

Disability Rights Defenders is a network of people and organisations with an interest in the rights and law of 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 organizations, lawyers and law schools. By mutually sharing legal knowledge, the ability to use the law as a tool is strengthened. This is done concretely by bringing people together in our Facebook group 'Disability Rights Defenders'.

Paige Martin, intern, wrote a short impact report  for the years 2018 to 2024 and a Nordic meeting was held in Stockholm in November in connection with ENIL's regional meeting.

In 2024, the Facebook group had 2,700 members from about 100 countries. Members share their experiences, methods and advice on how to use the law as a tool. The newsletter has 600 subscribers. 

RTA - Mutual Integration and the Right to Work

The project Mutual Integration and the Right to Work (RTA), with support from the Swedish Inheritance Fund, is a three-year project that is now in its final year. The project builds on the experiences from the previous project Disabled Refugees Welcome, but with a focus on employment.

The aim of the project is to improve the integration process and increase employability among migrants with disabilities as well as to overcome 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. 

In 2024, the RTA - Mutual Integration and Right to Work project has intensified its efforts to promote labour market participation for migrants with disabilities.

During the year, several people from the project's focus group have carried out internships as well as other support measures and work-related activities with support from the project. A participant in the project who had been doing an internship from September 2023 was employed by RTA as an advisor and translator in January 2024. Two people who were also project participants had internships in the RTA project from October to December 2024. Four interns from other countries have been involved in organizing activities and activities. We visited the following four places for study visits: Multicultural Centre in Fittja, Tensta konsthall and Paralife Sports Café.  Bosse knowledge center, advice and support.

Knowledge development:

To share good experiences and inspire others, we gathered participants and experts to discuss how they themselves experienced the job search process and what works. The results of these conversations have been compiled in the publication: Tips for jobs, available in print as well as pdf, and translated to several languages: English – Tips book, Arabic, Amharic, Persian, Swedish and  easy-to-read Swedish.

Advice and support:

Counselling has continued to be a central part of the project. In person at the office as well as digitally or by phone. Support has several forms: It can be participants who ask us to support them during interactions with authorities and institutions, such as municipalities or the Public Employment Service, etc. It can also be advice provided directly to people from municipalities, national and regional authorities, etc. It often starts with contact made by phone or email.

The counselling is very much about providing guidance regarding systems for asylum and migration and disabilities. We have a lawyer in the project team who has been able to participate in the legal advice. We have also referred to other civil society organizations, authorities and decision-makers when necessary. The dual competence of the project on migration and disability is a good help in multi-sectional issues.

An analysis of different methods and areas of society has helped to make training material, improve guidance and remove obstacles.

Events and activities:

  •       Labour market activities:
    • In 2024, the project has arranged 10 “work” cafés
    • 3 mobile receptions
    • 4 study visits to facilitate making contacts and networking.
    • At the Human Rights Days in Skellefteå, we reached a wide audience through a well-attended stand and two seminars.
    • We visited Järva Week, had a stand at a health fair and participated in Welcome House in Stockholm municipality.
    • Networking has been important and many have visited us following events where we have been involved to get more information for their organisations.

  •       Training:
    • Together with MISA, we have carried out two full-day training courses on Supported Employment to strengthen the skills of both the project team and participants in the focus group. 
    • A training course was held  for Jobbtorget in Farsta about the CRPD and active involvement.

Website and Facebook:

The website had 9,700 visits in 2024 and  the Facebook page had 565 followers. During the year 2024, 10 newsletters were sent out, with 59 news articles and notices, etc. Information material has been produced and disseminated to the project's target group and various actors in the field.

In conclusion, in 2024 the project has contributed to raising awareness of the labour market needs of migrants with disabilities. By offering a wide range of activities and support, we have promoted labour market participation for migrants with disabilities. 

K2 project

K2 is Sweden's national knowledge centre for collective mobility. ILI has been engaged within the research project  "A deeper understanding of potential obstacles and conditions with current and future solutions in public transport for people with disabilities".

In 2024, Jamie wrote an article on lessons learned from TRIPS (https://trips-project.eu/ ) that she presented at the online final conference of the project in November. The project period for ILI's part in the project was May - December 2024.

Adolf Ratzka Memorial Fund for Migrants with Disabilities

Adolf's family decided that memorial gifts should go to "The Adolf Ratzka Memorial Fund for Migrants with Disabilities" that the Independent Living Institute will administer. Swish 123 191 01 40 or Swedbank corporate account: 8327-9,974 619 323-5. It was also decided that ILI would complete Adolf's own website, which is located on Ratzka.se

 HHF project on the historical development of the Swedish assistive technology system

During 2024, ILI, in collaboration with the Disability Historical Association (HHF), started a feasibility study for a project that will investigate the historical development of the Swedish assistive technology system. The project that HHF is planning includes areas such as distribution, procurement, information, product development and product ideas. In November 2024, parts of the feasibility study were presented to HHF's board. The feasibility study, which was originally planned to be completed in November 2024, was extended until February 2025.

OTHER INFORMATION ABOUT THE ACTIVITIES AND THE INSTITUTE

Disability Discrimination Reporting Service, Library, DI-Project, Disabled Refugees Welcome, Fashion Freaks, The Law as a Tool and Article 19 as a Tool, 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.  During 2024, the website had about 5,000 visits from about 5,000 people. 17 reports of discrimination were submitted. ILI also had a meeting during the year with DHR about their similar service "Bort med Hinderet" and discussed future cooperation.

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 publishing system Drupal 7 used for ILI's website and the library is "end of life" at the end of 2024 and must be replaced. ILI is planning an upgrade to Backdrop CMS in 2025.

The DI project - a publication on de-institutionalisation: With funding from the Grant Foundation,  ILI ran a project in 2022 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 when the large institutions were closed when the support was regulated with the LSS reform and with personal assistance. The publication also highlights today's challenges with risks of institution-like working methods and re-institutionalization. The publication is available to order in printed format and is also published digitally.

Disabled Refugees Welcome is an integration activity that lives on on a smaller scale after the project financed by the Swedish Inheritance Fund has ended, including 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 handbook "Pathways towards mutual integration" and the methodological handbook "Welcome whoever you are", bring together the conclusions of the DRW, 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 for support/advice have been referred either to other actors or to the Right to Work project, depending on what the case is about. The website for Disabled Refugees Welcome is now used by the Right to Work project, which originated from the DRW project.

Fashion Freaks - your online fitting room is all about fashion, clothes and vanity from a sitting 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 custom 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 120 people per day in 2024, half of which 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.

Ratzka.se was created privately by Adolf Ratzka in 2021 but was never finished - ILI will complete the website during 2025.

Conferences/seminars/study visits/educational initiatives and participation in other actors' events

During the year, many conferences, seminars, study visits and educational initiatives were arranged. ILI's staff also participated in other actors' events. Below is a selection of these.

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 2024:

  •   10/1 meeting with the UN CRPD committee task force responsible for investigating Sweden's compliance with the convention prior to Sweden's interrogation.
  •   8/2 meeting with the Swedish Institute for Human Rights to give input to their alternative report to the UN CRPD committee before Sweden's interrogation.
  •   29/5 meeting on Sweden's dialogue with the UN CRPD committee to provide input on the Ministry of Health and Social Affairs' work with recommendations from the committee.
  •   Alternative report to the UN CRPD committee ahead of Sweden's examination 

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

ILI is part of an expert council organized by NKCDB where ILI, through a consulting assignment with Ola Linder, has contributed 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 the association Disability Rights Defenders Sweden (DRDS)

Disability Rights Defenders Sweden (DRDS) pursues discrimination cases related to disability, if necessary in court. In addition, the association provides information about the human rights of people with disabilities, provides advice and information about disability discrimination. ILI and DRDS collaborate, among other things, through information dissemination, as DRDS' website is part of 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 organizations 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 easily been able to find co-applicants for project applications and other collaborations. An increasing collaboration is taking place between organisations prior to making joint consultation statements and other political initiatives. We also have good international contacts through our long-standing 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 to expand our network and deepen our collaboration with other organizations. In this way, together with many other actors, we have been able to contribute to an increased rate 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 concern 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 organizations 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 affecting migrants with disabilities. The network has rotating chairs of all authorities and organisations that are part of the network.
  •   The Human Rights Network led by the Swedish Human Rights Fund.
  •   The Network for Human Rights led by the Swedish Institute for Human Rights.
  •   The Advisory Team, which is led by the Disability Law Bureau at Disability Rights Sweden.
  •   The project with ULOBA on research on self-determination and personal assistance within NCCPA.
  •   Nordic IL Competence Centre (ENIL & ULOBA).
  •     The Secondary Project (DHR).

 Reference groups that ILI has been part of:

  • Funktionsrättsbyrån - Funktionsrätt. The project runs until May 31, 2025.
  • Our voices must be heard - Funktionsrätt, Beunderstandsam, Handikapphistoriska föreningen. 3 year project starting 2023
  • Research position at Maria Cederschiöld University College
  • Different but equal - Multilingual user support (Tahrir and ABF Malmö, financing by the Swedish Inheritance Fund)
  • Peer support with STIL (Foundation Independent Living Development applicant foundation, funding from the Swedish Inheritance Fund)

 ILI's Chairman of the Board, Adolf Ratzka, was:

ILI's Executive Director and Chairman of the Board, Jamie Bolling, has during the year been:

ILI's staff

In 2024, the workforce had a rich variety of skills and experiences, many with their own experience of disabilities, an even distribution between genders, a wide span of ages and with origins in different countries. In 2024, 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 until March 2024.

Ashraf Frugh, project co-worker in the Right to Work project.

Emil Erdtman, project co-worker in the Right to Work project and in a project together with the Disability Historical Association on a feasibility study on assistive devices.

Erik Tillander, journalist and project co-worker in Assistanskoll and the Right to Work project.

Jamie Bolling, Executive Director and Project Manager of the Right to Work project (shared project management with Tiina Nummi-Södergren until March), and project manager of the Disability Rights Defenders project.

Kenneth Westberg, journalist and project manager for Assistanskoll.

Linda Robertsson, Head of Office incl. administration, personnel and finance.

Mari Siilsalu, lawyer and project co-worker in the Right to Work project.

Maria Johansson, project co-worker in the Right to Work project until March.

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 Right to Work project.

Tiina Nummi-Södergren, project manager in the Right to Work project (shared project management with Jamie Bolling until March, then sole project management).

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

Ola Linder, with contributions to the NKCDB assignment.

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:

Nelly Hölter, 13 November 2023 - 26 January 2024.

Luana Butzer, December 2023 - March 2024.

Leonie Grießer, December 2023 - March 2024.

Paige Martin, July 7 – August 19, 2024.

Paulos Sereke, 7 October – 31 December 2024.

Lili Amere, 15 October - 30 December 2024.

Financing

ILI thanks:

In addition to this, ILI's activities have been financed through fees for various assignments, such as NKCDB, through advertisements on Assistanskoll.se and private gifts, most of which went to the Adolf Ratzka Memorial Fund for Migrants with Disability. 

Composition of the Board of Directors and meetings

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. Founded the Independent Living Institute and was its executive director from its inception in 1993 until September 2017. Adolf was the chairman of the board until his death in July.

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

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

Jamie Bolling, Härnösand, is a human rights defender with a focus on disability issues, executive director of ENIL 2009 - 2017, former member of the boards of STIL and the green Party, Chairman of MyRight's board. Jamie was elected Chairman of the Board on September 20, 2024.

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

Miro Griffiths, Leeds, UK, is employed by Leeds University and teaches disability rights issues; between 2015 and 2018 employed as a researcher at Liverpool John Moores University; received an MBE award (Member of the Order of the British Empire) in 2014 for his work on behalf of 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; a member of the City of Liverpool 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, former President of the InterAmerican 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.

In 2024, the Board held three Board meetings, on 20 February, 22 May and 20 September. In addition, contact has taken place via email, telephone and individual meetings.

 2025-04-14

  

Jamie Bolling

Chairman     

ili Project: