EuropEan nEtwork on Independent LIvIng

2 18AnnuAl report

© European Network on Independent Living, July 2019

Design and layout: Marieta Vasileva

Photos: ENIL archives

Annual report 2018 I 1

Foreword

The fact that you are reading this report means that, despite all the challenges, we have survived 2018 and on top of that, managed to do a lot of work. Having lost the European Commission funding for our operat-ing costs, we were forced to start the year by adapting our activity plan and budget, and by making changes to our team. Unfortunately, we had to say goodbye to our new Director Zara Todd, who started in Octo-ber 2017, and to our Membership Officer and Youth Network Coordinator Dilyana Deneva, who had been with ENIL for several years. Our Office manager Mar-co Carnesecchi also changed to working part time. We are pleased that both Zara and Dilyana went on to new adventures, and appreciate Zara’s continued work for ENIL, in a voluntary capacity.

We are thankful for the continued support of our main funders – ULOBA and the Open Society Founda-tions – Public Health Programme – as well as that of our Swedish members STIL and GIL. Without their be-lief in ENIL, we would not have been able to overcome the major setback of losing our Commission grant.

We live in difficult times for human rights and human rights defenders. Disability rights are no exception. Regardless of what part of Europe we live in, we are witness to setbacks in terms of access to personal as-sistance, continued or increasing institutionalisation, decreasing budgets to support independent living, to name a few.

This report provides an overview of our activities last year. We hope that by reading it, you will get a sense of the effort undertaken by ENIL to change status quo. All the activities you can read about are a result of collective work by the ENIL staff, volunteers and our members around Europe. Despite being a small orga- nisation and the different challenges we face, we need to make sure we continue supporting each other and challenging those that stand in the way of the right to independent living.

Yours sincerely,

Kapka PanayotovaPresidentEuropean Network on Independent Living

2 I European Network on Independent Living

About the Annual Report

This report covers ENIL’s activities between 1 January and 31 December 2018. It is aimed at anyone who would like to find out more about the European Network on Independent Living and our main activities. This includes our members, allies, disabled people, funders, supporters and the general public. The Annual Report is divided into five sections:

I. Highlights | 5

This includes a description of ENIL’s main achievements during the year.

II. Overview of activities | 6

ENIL’s main activities are presented under five categories: Awareness raising, Policy, Capacity Building, Campaigning, Research and Strategic partnerships.

III. About ENIL | 14

This section includes information about how we work, starting with changes in our team, our members, fundraising and other areas.

IV. Financial report | 20

A presentation of ENIL’s income and expenditure in 2018.

V. Members | 21

This section includes a list of ENIL’s full and associated organisational members, as of 1 July 2019.

Annual report 2018 I 3

I. Highlights

European Independent Living Day

The 5th edition of the European Independent Living Day – launched by ENIL in 2014 on the 5th May – was celebrated in Brussels and across Europe. In Brussels, ENIL hosted a screening of ‘Defiant Lives’, a documen-tary about the rise of the disability rights movement, hosted by MEPs Helga Stevens, Brando Benifei, Heidi Hautala, Jean Lambert, Julie Ward and Merja Kyllönen.

Working With Our Members

We worked closely with our members in Spain, Bulgaria, Sweden, France and Belgium (Wallonia), supporting them to organise events on Independent Living and to influence the use of EU Funds. In Spain, we helped organise the 2nd Congress on Independent Living, while in Bulgaria, we put together an event focusing on Investing in Independent Living, with the Centre for Independent Living Sofia and the European Disability Forum. In Sweden, we supported a seminar on using law as a tool for Independent Living. In France and Belgium, the focus was on deinstitutionalisation and the use of European Structural and Investment Funds, and we were supported by the French MEP Pascal Durand.

ENIL-ECCL Monthly Webinars

In the framework of the European Coalition for Community Living (ECCL), eleven webinars were held on a monthly basis, showcasing the work done around Europe in, among other, moving people from institutions into the community, providing person centred support, housing, supported employment and co-production. The webinars were organised in cooperation with Nic Crosby of GatherBuildWork and the recordings are being used for training purposes, to show what can be done to support people to live independently.

New Fact Sheets on Independent Living

That Independent Living is for ALL is clear from Article 19 of the UN Convention on the Rights of Persons with Disabilities and the General Comment No 5. But, what does this mean in practice? ENIL’s new fact sheets include answers to the most common questions on independent living when it comes to children and people with intellectual disabilities.

Complaint to the European Ombudsman

In October, we submitted a complaint to the European Ombudsman against the European Commission, for maladministration in handling ENIL’s application for an operating grant for 2018 – 2021. We alleged that the European Commission was wrong in not using independent external evaluators to decide which EU-level NGOs get the funding, and that we should have been provided with evaluation sheets relating to our unsuc-cessful application. Our complaint was found admissible and there is an ongoing investigation in place, with a decision expected by the end of 2019.

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Protest against the cuts during the Global Disability Summit in London.

Disability High Level Group meets in Brussels.

DPO representatives from India visit ENIL’s office. Nadia Hadad speaking at the first Global Disability Summit in London.

Annual report 2018 I 5

Nadia Hadad presents during the Global Disability Summit in London.

ENIL Youth Network member Marianne Knudsen and Zara Todd during the Global Disability Summit in London.

ENIL President Kapka Panayotova and Bulgaria’s Minister of Labour and Social Policy Biser Petkov at the opening of our conference on ‘Investing in Independent Living’.

A conference on translating UN CRPD into reality in Tirana.

ENIL with EEG colleagues after a meeting with Commissioner Thyssen’s Cabinet.

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II. Overview of activities

Awareness raising 2nd Congress on Independent Living in Spain

In Spain, to this day, many disabled people are unable to use regular transport, cannot access public and private buildings, cannot leave their house, do not have an interpreter in sign language etc. To this day, many disabled people in Spain are confined to residential institutions, as part of a policy model that promotes segregation and that is perpetuated by allocating public money; despite the fact that public money going towards social services is very limited, and has been affected by austerity. Still, the funding goes towards the building of new institutions, instead of developing independent living policies, personal assistance, provision of technological assistance, and housing within the community, overlooking the fact that Independent Living is a human right.

This was the reason why the Spanish Federation of Independent Living (FEVI) organised the 2nd Congress on Independent Living on 25 – 26 October in Valencia, Spain. ENIL supported FEVI by coordinating international speakers, which included Stig Landvag, the then member of the Committee on the Rights of Persons with Disabilities (via video link), Adolf Ratzka from the Independent Living Institute (via video link), Eva Liz Moen from ULOBA, our President Kapka Panayotova and our Board member Nadia Hadad. The Congress was live streamed in Spanish and English.

Find out more: read the joint Press Release and watch the presentations in Spanish and English.

Independent Living in France

In 2017, France was visited by the UN Special Rapporteur on the Rights of Persons with Disabilities Ms. Cata-lina Devandas Aguilar, who published a very critical statement on the implementation of Article 19 CRPD. In response, ENIL, Gré á Gré, COVIAM – Coopérative pour la vie Autonome at Mandataire and CHA – Coordi-nation Handicap et Autonomie, with the support of the Independent Living Institute (Sweden), CNCDH – La Commission nationale consultative des droits de l’homme and MEP Pascal Durand organised a Conference on Independent Living on 4 April, in Paris. The aim of the conference was to raise awareness about the situ-ation of disabled people and advocate for the right to independent living in France.

The event provided an opportunity for French user-led organisations and ENIL to discuss Independent Liv-ing and how to stand up to the strong lobby for institutional care. It targeted disabled people, independent living activists, French politicians, journalists, professionals, public servants and the European Commission officials.

European Disability and Development Week

For the third year in a row, ENIL took part in the European Disability and Development Week in Brussels. As part of the week, we organised an event on 7 December, at the UN OHCHR – Europe Regional Office, on promoting Independent Living through Sustainable Development Goals (SDGs). We were joined by a group of disabled people – disability activists – from India.

Find out more: read the report from the event.

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5th May – European Independent Living Day

In the months before the 5th May, ENIL encouraged its members to mark the 5th European Independent Living Day by organising awareness raising activities in their countries and to share with ENIL information about the barriers to independent living they face. Our members and allies in 22 countries answered the call, from Armenia to the UK. Among the activities that took place was a photo competition, organized by the Network of Women with Disabilities in Bosnia and Herzegovina and a series of recorded testimonies from disabled people in France on the shortcomings of the home care system.

ENIL marked the Independent Living Day by organising a screening of “Defiant Lives”, a documentary about the history of disability rights movement, in the European Parliament. The event, held on 4 May, was hosted by MEPs Helga Stevens, Brando Benifei, Heidi Hautala, Jean Lambert, Julie Ward and Merja Kyllönen. On 5 May itself, we shared information about activities around Europe on the social media, reaching 11,000 people through our Facebook page.

Find out more: read about the 5th May in the Press Release and the report.

Media work & publications

On 3 December, on the occasion of the International Day of Persons with Disabilities, we published a Press Release on the importance of grassroots advocacy. The PR was widely shared on social media and translated into Serbian. Read it here.

On 11 December, with the European Disability Forum (EDF) and European Women’s Lobby, we called for the resignation of Icelandic MEPs, involved in the slandering of our member in Iceland Freya Haralsdottir. The story was widely reported in the mainstream media, including the BBC and New York Times. Our joint PR is available here.

We published a general leaflet about ENIL, which can be downloaded from here. New Independent Living fact sheets were published on children, and on people with intellectual disabilities (in cooperation with In-clusion Europe). They are available from here.

Policy Advocating for Independent Living in Croatia

On 16th March, ENIL took part in a roundtable in the Croatian Parliament, organised by Platform 112 and hosted by the Member of Parliament Bojan Glavašević. Platform 112 is a coalition of civil society organisa-tions – among them the Association for Self-Advocacy – focused on promoting the rule of law. The round- table was organised in response to the lack of political will to continue the process of deinstitutionalisation of adults with disabilities – a process which began under the previous Government, and resulted in the clo-sure of several long-stay residential institutions. Our role in the roundtable was to present the briefing on EU Funds and Independent Living, which included data from Croatia. Find out more here.

On 20 April, ENIL sent an Open letter to the Croatian Minister of Demography, Family, Youth and Social Policy Ms. Neda Murganić, in order to raise our concerns about the current administration’s reluctance to continue the process of transition from institutional care to living in the community. Read the letter here.

On 10 October, we joined Human Rights Watch, Inclusion Europe, the Centre for Peace Studies Croatia and the Human Rights House Zagreb in calling on the Croatian Government to end the confinement of children and adults with disabilities in institutions. In addition to sending a letter to Croatia’s Prime Minister Andrej Plen-ković, we published a joint Press release. Among the key demands was the phasing out of institutions and the development of high quality community-based services. Concerns were also raised about placing adults with disabilities in foster care and under guardianship. Find out more in the letter and the Press Release.

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Investing in Independent Living Conference

On the occasion of Bulgaria’s EU Presidency, ENIL, CIL Sofia and EDF co-organised a conference in Sofia on 8 June, titled ‘Investing in Independent Living. The conference coincided with the publication of the European Commission’s proposal for the post 2020 European Structural and Investment Funds (ESI Funds) Regulations and aimed to raise awareness about the need to re-consider how ESI Funds are invested in Bulgaria.

The conference was opened by our President Kapka Panayotova and the Minister of Labour and Social Policy Biser Petkov. Among the conclusions of the conference was the need to stop calling things what they are not, and to insist on the definitions based on the CRPD to be included in the EU legislation and policy documents governing the use of ESI Funds. In addition, the conference called for better cooperation among the civil society in advocating for an end to investing into services which are known not to deliver on social inclusion and independent living.

Find out more: read the conference report here.

Post 2020 Multi-annual Financial Framework (MFF)

At the end of May 2018, the European Commission published its legislative proposals for the Post 2020 Multi-annual Financial Framework. ENIL’s aim is to ensure that the new framework facilitates investment of EU funds into services and infrastructure that support Independent Living, and to prevent further spending on projects that segregate disabled people or in other ways fail to comply with the CRPD. To this end, ENIL took the following steps:

• Publishing a position paper on the new ESIF Regulations – Commission proposal for 2021 – 2027. Find out more here.

• Providing input into the UN OHCHR – Regional Office for Europe paper on the EU budget post 2020, and the European Expert Group on the Transition from Institutional to Community-based Care (EEG) paper on the same topic. Find out more here and here.

• Attending the European Social Fund (ESF) conference in Sofia, Bulgaria, organised by the European Com-mission on 15 – 16 February, where our Advocacy Officer Frank Sioen co-chaired a workshop on deinsti-tutionalisation.

• Drafting amendments to the Commission’s Erasmus+ and European Solidarity Corps proposals, in coop-eration with EDF.

European Elections 2019

With the European elections coming up in May 2019, we took initial steps to raise awareness about the im-portance of voting and to put Independent Living high on the agenda. Our Elections Manifesto was launched with a Press Release on 12 November, and was sent to MEPs and to all the political groups in the European Parliament.

Find out more: read the manifesto here.

Petition to the European Parliament

On 20 September, ENIL, CIL Sofia, the Validity Foundation and the Bulgarian Helsinki Committee (BHC) sub-mitted a petition to the Petitions Committee (PETI Committee) at the European Parliament. The petition con-cerns the planned use of the European Structural and Investment Funds (ESIFs) for building group homes for people with disabilities and older people, as part of the Bulgarian Government’s efforts to deinstitutionalise the long-term care system. Between 2007 and 2013, Bulgaria has built 140 group homes for 1,845 children and plans to continue with the construction of such facilities for adults with disabilities and older people in the current ESIF programming period (2014 – 2020).

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Annual report 2018 I 9

The petition was accepted by the PETI Committee and an investigation was opened, starting with a request by the Committee to the European Commission to respond to the various allegations.

Find out more: read the petition here.

Advocating for the right to family for all children

In December, ENIL endorsed a position paper on ‘The right to live and grow up in a family for all children’, written by Disability Rights International (DRI) and supported by the Validity Foundation, TASH and others. The statement was published in response to the continued placement of children in so-called family-type homes, or small group homes, as an alternative to family-based care. This practice predominantly affects children with disabilities, who are deprived of family care, segregated from peers, excluded from education and other opportunities to grow up included in society. Find out more here.

We also provided input to UNICEF for their forthcoming position paper on the role of small group homes in the transition from institutional to community-based care and in the continuum of care. ENIL has argued that there is no replacement for a family and therefore no child should be placed in a family-type, or fami-ly-like, home.

Other policy areas

Older people: On 12 and 13 April, ENIL attended the European Expert and Stakeholder Meeting to Provide Input for the 9th Session of the Open-ended Working Group on Ageing (OEWGA). This seminar on the Hu-man Rights of Older Persons was co-hosted by Age Platform Europe and the UN OHCHR – Regional Office for Europe. Considering that the 9th Session focused on Autonomy and Independence, we also prepared written input. Read ENIL’s submission here.

Rail Passengers Rights: On 13 April, our member Eddy Schelfhout travelled through Belgium with Dr. Alex-ander Vogt, the transport advisor of European Parliament Vice President, MEP Boguslav Liberadzki. Eddy’s account of the trip and the different obstacles they encountered was presented in Strasbourg, at a European Parliament debate on the rail passengers’ rights on 30 May. The debate was hosted by MEP Liberadzki, with the support of ENIL, EDF and the Community of European Railway and Infrastructure Companies (CER). Find out more here.

Working Time Directive: With the European Public Service Union (EPSU), we have been looking at the im-pact of this Directive on the right to independent living, more specifically the work of Personal Assistants. We also took part in EPSU’s Annual Meeting, where we brought forward the concerns of disabled people.

Law as a Tool: Together with our Swedish member, the Independent Living Institute, we co-organised a con-ference on 30 May in Stockholm, on ‘Using the Law as a Tool for Social Change’. The conference was aimed at disability activists, legal professionals, law students, and others working against discrimination on the grounds of disability. Two other events were organised on the side of the conference – ‘Match on the Law as a Tool Workshop’ and the first meeting of the Disability Rights Defenders Network for disability activists and legal professionals. Find out more here.

Capacity buildingStudy session on active citizenship and political participation

In cooperation with the Council of Europe Youth Department, we organised our 7th study session, entitled “Active citizenship and political participation of young disabled people as a pathway towards Independent Living”. The study session took place between 24 June and 1 July, at the European Youth Centre in Stras-bourg, France. It gathered 17 participants from 13 countries, with lots of diversity in terms of cultural and knowledge background, as well as disability.

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The intensive six-day program allowed participants to explore key aspects of leadership and empowerment, which prepared them to return to their communities and support other young disabled people’s awareness and access to political participation and human rights. The session was delivered by a group of young dis-abled people from the ENIL Youth Network – Rados Keravica (Serbia), Elena Ratoi (Moldova), Charlie Willis (UK), Miro Griffiths (UK) and Dilyana Deneva (Bulgaria)

Find out more: read the study session report here.

ENIL-ECCL webinars on deinstitutionalisation

Together with Nic Crosby, or GatherBuildWork, we re-established the European Coalition for Community Living (ENIL-ECCL) and organised a series of monthly webinars on different aspects of moving from an insti-tution to living independently in the community. The aim of the webinar series was to build the capacity of organisations and individuals advocating for, or practically supporting deinstitutionalisation efforts in their countries.

A total of 11 webinars took place, with speakers from the UK (Scotland and England), Slovakia, Slovenia, the Czech Republic, USA, Australia, Sweden, Italy, Belgium, Croatia and Romania. Topics ranged from housing, person centred support, to co-production and leadership. In addition to webinar recordings, which have been widely shared for training purposes, monthly newsletters were also sent out to a list of over 100 sub-scribers.

Find out more: watch the webinars here.

CampaigningEU Funds for Our rights Campaign

Our EU Funds for Our Rights Campaign continued, with activities targeting the European Commission offi-cials and Members of the European Parliament, and in cooperation with our members and allies from across the European Union. The focus in 2018 continued to be on monitoring, making complaints and supporting local organisations with activities at the grassroots level.

On 8 March, we launched a Briefing on the Use of EU Funds for Independent Living at an event in the Euro-pean Parliament hosted by MEPs Miriam Dalli, Jana Zitnanska, Julie Ward and Pascal Durand. The UN Special Envoy on Disability and Accessibility María Soledad Cisternas set the context, after which we presented the main conclusions and recommendations of the report.

On 14 – 15 June, a two-day event in Brussels brought together our partners working at the national level to exchange information about the use of EU Funds in different countries. Among the main concerns highlight-ed was the use of funds to build small institutions for disabled people in different countries. An open session with European Commission officials took place on the second day, to allow participants to ask questions about the Commission’s role in monitoring and programming of EU Funds.

ENIL focused on a number of countries, where specific concerns were identified by NGOs. These were Hun-gary, Portugal, Slovenia, Romania, Croatia, Bulgaria, France and Belgium (Wallonia). In Hungary, ENIL worked together with the Validity Foundation and the Hungarian Civil Liberties Forum (HCLU), with whom we sub-mitted complaints to the Managing Authorities and the European Commission in relation to the building of a large number of segregated facilities (referred to as “supported housing”) for disabled people. In addition to complaints, several meetings were held with officials responsible for Hungary at DG Employment and DG Regio, but without concrete results. One outcome of our advocacy activities was the suspension of a similar call for proposals, which would have resulted in an even larger number of segregated facilities.

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Annual report 2018 I 11

Among our other activities was the work on a written question on France, with MEP Pascal Durand, meetings with desk officers at the European Commission, MEPs and the office of the European Ombudsman. We also supported our member in Belgium (Wallonia), in drafting a project on Personal Assistance, with a view of obtaining ESI Funds in the future.

Find out more: read the briefing here.

Freedom Drive 2019 and 30th Anniversary

Having secured a part of the funding from the Bente Fund, we started planning the 2019 Freedom Drive in Brussels. The Freedom Drive will take place on 1 – 3 October, and will include workshops on Independent Liv-ing, a protest march, a hearing in the European Parliament about the freedom of movement in the EU and a conference on Independent Living. ENIL’s General Assembly will also take place, as will our 30th Anniversary celebration alongside some of the founders, the Freedom Drivers and our partners in Brussels.

In 2018, our focus was on dealing with the practicalities, and we are thankful to Ms. Marie-Anne Paraskevas at DG Employment, European Commission for her help in securing the free use of the Commission confer-ence facilities in the Charlemagne building.

Find out more: read the Freedom Drive programme here.

researchUser-Led Personal Assistance in the European Union: A Critical Comparative Analysis

The research project ‘User-Led Personal Assistance in the European Union: A Critical Comparative Analysis’ began on 1 May 2017 and was ongoing throughout 2018. The aim of the project was to compare and eval-uate user-led personal assistance schemes for disabled people across the European Union. This aim was achieved by co-producing and piloting a tool for evaluation of personal assistance schemes from the per-spectives of independent living and the social model of disability.

During 2018, Dr. Teodor Mladenov (Research Fellow) focused on finalising the tool by collecting input from disabled people in Belgium (Flanders), Bulgaria (Sofia), Ireland, Serbia, Slovenia, Spain (Andalucia), Sweden and the UK. We started planning the closing event, which took place on 25 March 2019, in Brussels.

Find out more: read the Personal Assistance Checklist.

Collection of examples on Independent Living

In cooperation with the European Disability Forum, we started working on a collection of good practices on Independent Living in 2017. A questionnaire was disseminated through EDF’s and ENIL’s network, but a limited number of responses was received. The researcher, Lilia Angelova Mladenova, therefore spent a significant amount of time identifying additional examples and reaching out to organisations which provide these services. The report was finished towards the end of 2018, and was approved for publication by both organisations. We decided to refer to ‘examples’, rather than ‘practices’, as most of what was included in the collection is available to a limited number of individuals and is not part of the mainstream provision. The launch date for the report was set for March 2019, in the European Parliament.

Find out more: read the report here.

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Independent Living research Network

Regular updates have been made to the Independent Living Research Network reading list, available here.

Our Deputy Director Ines Bulić Cojocariu was invited to contribute a chapter to the Global Perspectives on Disability Activism and Advocacy: Our Way, edited by Prof. Karen Soldatic and Prof. Kelley Johnson, to be published by Routledge in September 2019. The volume features a chapter on ENIL’s advocacy in the Euro-pean Union on the use of European Structural and Investment Funds.

Strategic partnershipsEuropean Disability Forum (EDF): As a member of EDF, we provided input into EDF’s work on accessibility, rail passenger rights, Sustainable Development Goals (SDGs), freedom of movement and inde-pendent living/deinstitutionalisation. Nadia Hadad has been representing ENIL on EDF’s Executive Commit-tee. Kamil Goungor was appointed by the ENIL Youth Network to the Youth Committee, of which he is the Chair. Zara Todd sits on the Women’s Committee. We have taken part in EDF’s Annual General Assembly, Board meetings and regular coordination meetings for EU-level networks in Brussels.

Nadia Hadad has been taking part in a project run by EDF and Sightsavers on “Building Partnerships for the SDGs – Empowering Indian DPOs”. The project, which started in March 2018 and will run for 3 years, has as its objective to establish, strengthen and stimulate policy dialogue and partnerships between DPOs in India and EDF. Representatives of Indian DPOs came to Brussels in December, on which occasion they met with some of the ENIL staff and Board, and took part in ENIL’s EDDW event.

Nadia Hadad also represented EDF at the first Global Disability Summit and the Civil Society Forum in Lon-don, on 23 – 24 July. During the Summit, she joined a protest by UK DPOs against the UK Government’s disability policy, which has resulted in severe violations of human rights, including denial of the right to live independently and to be included in the community. Read more here.

European Expert group on the transition from Institutional to Community-based Care (EEg): ENIL is an active EEG member and we have taken part in both internal and open meetings (with the European Commission). With EEG, we helped organise a roundtable in the European Parliament on 10 September to discuss the Commission’s proposal for the Post 2020 Multi-annual Financial Framework (MFF). Our Board member Nadia Hadad spoke at the EEG Open session during the Fundamental Rights Fo-rum in Vienna, and we took part in meetings with the Latvian and Bulgarian Permanent Representations in Brussels, as well as Commissioner Thyssen’s Cabinet, during which the MFF was discussed. Within EEG, Na-dia presented ENIL’s position on the use of small group homes (SGH) as an alternative to large institutions; in this respect, ENIL uses the General Comment No 5 on Article 19 CRPD to advocate against the use of SGHs. At the end of the year, Nadia Hadad was elected as one of the three co-chairs of EEG for 2019 (alongside Milan Šverepa from Inclusion Europe and Jana Hainsworth/Katerina Nanou from Eurochild), in her role as the EDF Executive Committee member, and will be supported by the EDF Secretariat. Find out more here.

CEJI – A Jewish Contribution to an Inclusive Europe: ENIL is part of the Facing the Facts Project, coordinated by CEJI – A Jewish Contribution to an Inclusive Europe. The aim of the project is to make hate crime visible and to strengthen the capacity of law enforcement and EU citizens on the topic. In 2018, Jamie Bolling represented ENIL at the meeting of the EU High Level Group on Combating Racism, Xe-nophobia and other forms of intolerance (organised by DG Justice at the European Commission). There, CEJI presented the research on hate crime and announced the first outcomes of a new online training platform, which ENIL helped develop. The platform was launched in September 2018. Find out more here.

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Work-Life Balance (WLB) Coalition: ENIL took part in the work of the WLB Coalition, coordinated by COFACE Families Europe. The Coalition campaigned for the new Work-Life Balance Directive. With COFACE Families Europe and the European Association of Service Providers for Persons with Disabilities (EASPD), we co-organised a side event during the Annual Convention on Inclusive Growth on 27 April.

Inclusive Mobility Alliance: We contributed to the work of the Inclusive Mobility Alliance, a network of organisations coordinated by Erasmus Student Network, which has been advocating for a more inclusive Erasmus+ programme. Find out more here.

Support Services of tomorrow: On 4 December, ENIL, EASPD, COFACE Families Europe, EDF, Inclu-sion Europe and Mental Health Europe extended the Joint Declaration on Developing Support Services of Tomorrow. The text of the declaration is available here.

European Social Fund (ESF) thematic Networks: ENIL was active in two networks – on Inclusion and Partnership. The networks brought together ESF Managing Authorities and civil society representatives, to exchange good practice in the use of the European Social Fund and to plan joint projects. Our Advocacy Officer Frank Sioen and EVS volunteer Miriam Graute took part in the ESF Thematic Network on Partnership meeting in Berlin on 13 – 15 May, where they visited successful co-production projects.

EU Agency of Fundamental rights: Zara Todd, our Senior Advisor, began her two-year term as a member of the Fundamental Rights Platform Advisory Panel at EU FRA in October 2017. Our Board member Nadia Hadad was elected to the Panel for the same term, as a representative of EDF. Find out more here.

Council of Europe: Rebecca Farren, the Co-chair of ENIL Youth Network Board was appointed a member of the Advisory Council on Youth at the CoE, for two years (2018 – 2019). Find out more here.

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III. About ENIL

Our team

There were a number of changes to the ENIL team at the beginning of the year, because of changes to ENIL’s budget. Two staff members were made redundant – Zara Todd (Director since October 2017) and Dilyana De-neva (Membership Officer and Youth Network Coordinator) – and the Office Manager position was changed into a part-time post. Ines Bulic Cojocariu, the Deputy Director, took over the responsibilities of the Director and has been supported by the Management Team (Jamie Bolling and Nadia Hadad). The staff met at ENIL’s office in Brussels on 30 – 31 May, to plan activities until the end of 2018 and the beginning of 2019.

Thanks to funding from the Open Society Foundations – Public Health Programme, ENIL was able to appoint a part-time Development Officer in October 2018. Following an open competition, Kamil Goungor was recruit-ed until the end of 2019, to work on membership development, fundraising from members and communica-tions. Kamil is based in Greece, given that as a disabled person who uses personal assistance it would be too costly to move to Brussels and to access the needed support.

We had a number of volunteers during the year, who helped with administration and policy work. Two Euro-pean Voluntary Service volunteers – Miriam Graute from Germany and Lauri Heikkinen from Finland – joined ENIL at the beginning of March for 8 months. Mikel Eguimendia and Naiara Santillana, both from the Basque County, had a 6-month internship funded by Fomento, Spain. Mazen Siufi and Dionysis Antanasiotis helped at the office during the year, with Dionysis doing 2-days a week throughout 2018. We were pleased that both Mikel and Mazen moved into paid jobs elsewhere during their internships.

Membership development

With Kamil Goungor joining the team at the beginning of October 2018, we were able to work more closely with our members. In November, we started sending a monthly mailing exclusively for members, with up-dates from the Secretariat, and we created new membership application forms which are available on our website. We began the process of revising and updating our membership tables, to be ready for the General Assembly in 2019.

Several of our members, from Belgium, Lithuania, Spain and Poland, attended the European Day of Persons with Disabilities in Brussels on 3 – 4 December, funded by the European Commission. We organised an infor-mal get together at our office on 2 December, and started planning a regional meeting for members, to take place in Warsaw, Poland in September 2019. The Secretariat has received numerous questions from mem-bers, and other disabled people, many in relation to studying and working in the EU, and disabled people’s rights as EU citizens.

Online Newsletters were published at the end of each month, with articles covering issues that ENIL has been working on and the main events and meetings attended. Many of the Newsletters included articles submitted by our members, about their work or the situation in their country with regard to Independent Living.

ENIL Youth Network

The Youth Network was established in October 2012, following ENIL’s first study session for young people. The Network existed informally until the 2017 Freedom Drive, when its first Board was formally elected and a Constitution adopted. The Board consists of the following members: Radoš Keravica (Serbia), chair; Rebecca Farren (UK), vice-chair; Andrey Sosnov (Russia), Kamil Goungor (Greece), Beyza Ünal (Turkey) and Marijeta Mojašević (Montenegro).

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The Youth Network has established cooperation with a number of youth organisations – the European Youth Forum (whose annual meeting it attends), the Erasmus Student Network, International Falcon Move- ment – Socialist Education International (IFM-SEI), OBESSU, Euro Youth Mental Health, among other. One of the Network’s two chairs, Rebecca Farren, sits on the Advisory Council for Youth at the Council of Europe and a member of the Youth Network, Kamil Goungor, was nominated to EDF’s Youth Committee and elected as Chair. Kamil stepped down from the Youth Network Board after he took up the position of Development Officer at ENIL in October 2018.

The main activity of the Youth Network in 2018 was the study session “Active citizenship and political participation of young disabled people as a pathway towards Independent Living”, which took place between 24 June and 1 July, at the European Youth Centre in Strasbourg, France. The session was delivered by a group of young disabled people from the ENIL Youth Network – Rados Keravica (Serbia), Elena Ratoi (Moldova), Charlie Willis (UK), Miro Griffiths (UK) and Dilyana Deneva (Bulgaria).

In April, a new application was submitted to the Council of Europe, together with Euro Youth Mental Health (EYMH). The study session “Mind the Gap: supporting young disabled people’s right to live independently and to be included in the community through exploring mental health as a disability issue” was approved and scheduled for 17 – 22 June 2019. The organising team was composed of Agnes Fazekas (Hungary), Beyza Unal (Turkey) and Rebecca Farren (UK), from ENIL Youth, Marco Carnesecchi from the ENIL Secretariat and Hugo Metcalfe from EYMH.

Members of the Youth Network took part in the Independent Living Day activities and spoke at a webinar ‘Young People Have a Lot to Say!’, which was held as part of the ENIL-ECCL webinar series on deinstitu- tionalization. You can watch it here.

Complaint to the European Ombudsman

During the year, ENIL tried to obtain evaluation sheets for its failed application under grant procedure VP/2017/04, for the 4-year Framework Partnership Agreements to support European networks active in the area “rights of persons with disabilities”. Having been refused evaluation sheets by the Disability Unit at the European Commission, we turned to the Secretariat General and made a request under the Commission’s access to documents facility. Finally, in October, our request was denied by the Director General of DG Em-ployment and a decision was made to file a complaint with the European Ombudsman.

Therefore, on 26 October 2018, ENIL submitted a complaint to the European Ombudsman against the Euro-pean Commission, for maladministration in handling ENIL’s 2017 application. In the complaint, we argue that the responsible Unit at the European Commission is in the conflict of interest, as it is solely in charge of allo-cating grants to civil society organisations (CSOs), while at the same time being responsible for coordinating the implementation of CRPD at EU level. Moreover, we allege that the lack of transparency prevents CSOs from establishing in what respect their work fails to meet the different selection criteria and goes against all democratic principles of good governance, including the management of public affairs and allocation of public funds.

ENIL’s complaint was declared admissible and an investigation was opened as a result. A decision is expected by the end of 2019.

In addition to making the complaint, ENIL was offered support by MEP Julie Ward, who questioned the Commission’s decision not to allocate funding to ENIL in a written question. The Commission’s answer to this question, which was co-signed by several other MEPs, is available here.

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Fundraising

In 2018, ENIL’s work was supported by ULOBA, the Open Society Foundations – Public Health Programme (OSF) and STIL. We also had two Commission funded projects – a Marie Curie Individual Research Fellowship (Horizon 2020) and the European Voluntary Service (Erasmus+), and a project funded by the Council of Eu-rope (CoE) Youth Department.

ENIL secured the support of ULOBA, OSF, STIL and GIL for 2019, and submitted several project applications. A total of 13,500 EUR were granted to ENIL by the Bente Fund towards the 2019 Freedom Drive and another study session application was approved by CoE for June 2019. The application for two European Solidarity Corps volunteers (replacing the European Voluntary Service) was also approved, with Lisa Madl (Austria) and Hatiye Garip (Turkey) selected for the two positions following an open competition.

Additional funding was raised during the year by providing consultancy services and through speaking fees. Our Advocacy Officer Frank Sioen carried out an access audit, and prepared a detailed report with recom-mendations, for the new United Nations offices in Brussels, and Deputy Director Ines Bulić Cojocariu worked on a report on the cost of institutional care vs. community-based services in Croatia, commissioned by EA-SPD.

ENIL’s Audit Committee, composed of five members (Patrick Wauters, Dimitris Karanastasis, Jamie Bolling, Nadia Hadad and Marco Carnesecchi) met regularly during the year to review ENIL’s finances and to ensure the organisation remains in good financial health.

New Privacy Policy

In compliance with the new General Data Protection Regulation (GDPR), ENIL adopted a new Privacy Poli-cy (available in English and Dutch), which came into force in May. The policy, along with Frequently Asked Questions, was made available on ENIL’s website. Procedures for collecting, handling and storing personal information were revised, and the staff and Board received guidance on the new rules. Read ENIL’s Privacy Policy here.

representation

ENIL was invited to many events and meetings in 2018, to speak about different aspects of the right to Inde-pendent Living. A small selection of these is highlighted below:

● Frank Sioen spoke at an event by the European Patient’s Forum about the freedom of movement.

● Kamil Goungor spoke at the EASPD seminar on co-production and youth employment in the European Parliament.

● Nataša Kokić spoke at the Lumos conference on the Economic Case of Investing in Early Intervention and Prevention, in the European Parliament.

● Miriam Graute, our EVS volunteer, presented ENIL’s paper on older people and independent living during the seminar on the Human Rights of Older Persons, co-organised by Age Platform Europe and the UN OHCHR – Regional Office for Europe, held in Brussels on 12 – 13 April.

● Nataša Kokić was a trainer at the ERA Academy of European Law Seminar on “Financial Instruments and Disabilities” in Trier on 17 – 18 May, and on 2 October, at a training on “Disability-related Financial Instru-ments in light of EU Law and the UN CRPD”.

● Ines Bulić Cojocariu spoke at the ESI Funds for Health Workshop in Prague on 25 May, focused on the reform of health care systems towards community-based support.

● Nadia Hadad moderated a panel on ‘Disability awareness and training programmes’ during the CRPD Work Forum, organised by the European Commission on 29 May.

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● Zara Todd represented ENIL at the Civil Society Forum and the Global Disability Summit in London, on 23 – 24 July, and at EU’s Fundamental Rights Forum in Vienna, on 25 – 27 September.

● Frank Sioen spoke at a conference on accessible transport, organised by DG Mobility and Transport at the European Commission.

● Nadia Hadad and Frank Sioen spoke at the “International conference on the evolution towards an inclu-sive education system” on 8 – 9 October in Brussels, organised by UNIA – Interfederal Centre for Equal Opportunities.

● Nataša Kokić spoke at the EESC hearing on using EU Funds for disabled people post 2020, on 23 October.

● Frank Sioen spoke at the Disability Intergroup meeting about rail accessibility and the EU Disability Card.

● Ines Bulić Cojocariu spoke at the national conference “Translating generalities of the Convention on the Rights of Persons with Disabilities into tangible actions”, organised by EDF and UNICEF in Tirana, Albania on 22 – 23 November.

● Nadia Hadad spoke at the European Day of Persons with Disabilities conference in Brussels on 3 Decem-ber, where her presentation focused on the EU budget.

● Ines Bulić Cojocariu spoke at a seminar organised by the Validity Foundation on 3 – 5 December in Bu-dapest, Hungary, on the “Global challenges in representing victims of torture with mental disabilities”.

ENIL was represented at the Structured Dialogue on ESIF Expert Group, the High Level Group on Disability, the CRPD Work Forum and the European Day of Persons with Disabilities, all of which were held in Brussels.

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18 I European Network on Independent Living

ENIL staff and volunteers during the annual face to face meeting in Brussels.

Zara Todd on the panel at the Fundamental Rights Forum in Vienna.

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Kapka Panayotova speaking at the 2nd Congress on Independent Living in Valencia, Spain.

EEG Open session at the Fundamental Rights Forum in Vienna.

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IV. Financial statement 2018

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total expenditures for 2018

total income 2018

Projects & events

136.742,17€

Personnel costs

173.710,38 €

Services, Travels & Goods

29.308,08 €

Bank charges and financial costs

1.538,88 €

Other Income

4.879,22 €

Projects grants

187.647,46 €Subsidies for personnel

3.687,96 €

Income from consultancies and events

7.277,00 €

Donations from members

146.991,54€

Annual report 2018 I 21

V. Our organisational members (as of 1 July 2019)

We have 61 full members and 36 associated members in 43 countries.*

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Europe

Albania Albanian Disabiltiy Rights Foundation (ADRF) – www.adrf.org.al

Together Foundation – https://www.facebook.com/sebashkufoundation/

Armenia ● Skarp Inclusive Health Center NGO –

www.skarp.am ● Unison NGO for Support of People with Special

Needs – www.unison.am

Austria ● BIZEPS-Zentrum für Selbstbestimmtes Leben

(BIZEPS) – https://www.bizeps.or.at/ ● SLIÖ – Selbstbestimmt Leben Österreich

(Independent Living Austria) – www.slioe.at

Belarus Office for the Rights of People with Disabilities – www.disright.org

Belgium ● Ensemble pour une Vie Autonome ASBL –

www.eva-bap.be ● GRIP vzw – www.gripvzw.be● Onafhankelijk Leven vzw (OL) –

www.onafhanelijkleven.be Fondation Shan – http://fondationshan.be

Bosnia and Herzegovina ● Bosnian Doctors for Disabled – https://www.

facebook.com/bosniandoctorsfordisabled/ Information center for persons with disabilities “Lotos” Tuzla – www.ic-lotos.org.ba

SUMERO – Union of organisations for support of people with intellectual disabilities

Association “Dajte nam šansu” – http://www.dajtenamsansu.org/

Humanitarian Organzation Partner – http://www.hopartner.org/

Bulgaria ● Centre for Independent Living Sofia (CIL-Sofia) –

www.cil.bg

Croatia Croatian Union of Associations of Persons with Disabilities (SOIH) – www.soih.hr

Spinalne ozljede Zagreb (Spinal Injuries Zagreb) – www.soz.hr

Cyprus ● Cyprus Paraplegics Association –

http://opak.org.cy/ European Social Forum (ESFC) – www.esfcyprus

Denmark ● LOBPA – Landsorganisationen Borgerstyret

Personlig Assistance – www.lobpa.dk

Finland ● Kynnys Ry ( The threshold) –

http://www.kynnys.fi/en/

France ● Association GRE A GRE – www.greagre.asso.fr ● Coordination Handicap et Autonomie –

Vie Autonome France – http://coordination-handicap-autonomie.com

Alliance Autiste – http://allianceautiste.org/

* Individual members and members of the ENIL Youth Network are not listed due to rules regarding public access to personal information.

22 I European Network on Independent Living

Georgia Coalition for Independent Living –

www.disability.ge

Germany ● Interessenvertre tung Selbstbestimmt Leben in

Deutschland e.V. (ISL E.V) – https://www.isl-ev.de/ ● Netzwerk für Inklusion, Teilhabe,

Selbstbestimmung und Assistenz – NITSA – http://nitsa-ev.de/

● Rhein-Main inclusiv e.v. – http://www.rhein-main-inklusiv.de/

Greece ● Paraplegicss’ Association of Drama –

http://spnd.gr/

Hungary ● The National Federation of Associations of Persons

with Physical Disabilities (“MEOSZ”) – www.meosz.hu

Validity Foundation – www.validity.ngo ÉFOÉSZ (Hungarian Association of Persons with Intellectual Disabilities) – http://efoesz.hu/

Iceland ● NPA miðstöðin – www.npa.is

The MND Association of Iceland – http://mnd.is/

Ireland ● Independent Living Movement Ireland (ILMI) –

https://ilmi.ie/ Irish Wheelchair Association – www.iwa.ie

Italy ● Agenzia per la Vita Independente Onlus Roma

(AVI ONLUS) ● Associazione Vita Indipendente –

www.avitoscana.org ● Comitatio Lombardo per la Vita Independente

delle Persone con Disablitá – https://vitaindipendentelombardia.wordpress.com/

● ENIL Italia – www.enil.it

Latvia Organization of people with disabilities and their friends “Apeirons” – www.apeirons.lv

Lithuania ● Independent Living Association –

https://savarankiskasgyvenimas.lt/ ● Lithuanian Disability Forum – http://lnf.lt

Luxembourg ● Nëmme Mat Eis asbl – www.nemmemateis.lu

Malta ● Kummissjoni Nazzjonali Persuni b’Diżabilità (KNPD)

National Commission Persons with Disability – www.knpd.org

Inspire (The Eden and Razzett Foundation) – http://www.inspire.org.mt/

Malta Federation of Organisations Persons with Disability (MFOPD)

Malta Association of Supported Employment Saint Lazarus Foundation

Montenegro ● Association of Youth with Disabilities of

Montenegro (UMHCG) – http://umhcg.com

North Macedonia ● Polio Plus – Movement against disability –

www.polioplus.org.mk

Norway ● Foreningen JAG – www.jagassistance.no ● Uloba – Independent Living Norway –

www.uloba.no

Poland Institute for Independent Living –

www.niezaleznezycie.pl Stowarzyszenie Kobiet Niepełnosprawnych

‘ONE.pl’ (The Association of Women with Disabilities ‘ONE.pl’) – http://onepl.org.pl/

Portugal ● Centro de Vida Independente – www.

vidaindependente.org ● Instituto Portugues para a Cidadania e Vida

Independente – www.vidaindepentende.org.pt

Romania AEPADO – European Association for the Defense of Human Rights – www.aepado.ro

Ceva de Spus – www.cevadespus.ro Fundatia Orizonturi Campulung Moldovenesc – www.orizonturi.org

San Marino ● Attiva – Mente – www.attiva-mente.info

Serbia ● Center for Independent LivingSerbia (CIL Serbia) –

www.cilserbia.org

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Slovenia ● Društvo za teorijo in kulturo Hendikepa (YHD) –

www.yhd-drustvo.si

Spain ● Vigalicia (OVI Galicia) – www.vigalicia.org ● Independent Living Federation of Spain (FEVI) –

www.federacionvi.org

Sweden ● GIL – Individual Independent Living – www.gil.se ● Independent Living Institute (ILI) –

www.independentliving.org ● JAG Association – www.jag.se/ ● Stiffarna av Independent Living i Sverige (STIL) –

www.stil.se

Switzerland ● Selbstbestimmung.ch –

http://selbstbestimmung.ch

Turkey ● The Association of Women with Disabilities –

http://engellikadin.org.tr/ Izmit City Council disability Council Abled youth and sports club, Kocaeli

United Kingdom ● Community Navigator Services CIC –

www.communitynavigatorservices.org ● Disabled People Against Cuts (DPAC) –

www.dpac.uk.net ● Disability Rights UK (DRUK) –

www.disabilityrightsuk.org ● Dudley CIL – http://www.dudleycil.uk/● Equal Lives – https://equallives.org.uk/ ● Equalities National Council/Global Institute for

Aspiring Entrepreneurs – www.equalitiesnationalcouncil.org.uk

● Glasgow Disability Alliance – http://www.gda.scot/ ● Inclusion London – www.inclusionlondon.org.uk ● Inclusion Scotland – www.inclusionscotland.org ● Linda Laurie Associates –

http://www.llassociates.co.uk/● North Yorkshire Centre for Independent Living –

www.nycil.org.uk ● Reclaiming our Futures Alliance (ROFA) –

www.rofa.org.uk ● Scottish Personal Assistance Employers Network

(SPAEN) – http://spaen.co.uk/ ● Self Directed Support Scotland –

http://www.sdsscotland.org.uk● SPECTRUM Centre for Independent Living –

www.SpectrumCIL.co.uk Euro Youth Mental Health –

https://euroyouthmhblog.wordpress.com/

rest of the world

Bangladesh Community Development Centre

Cameroon Cameroon Disabled Persons (CDPA)

Israel AlManarah – www.almanarah.org

Lebanon Forum Of The Handicapped In North Lebanon – www.theforum-lb.org

Nepal CIL Kathmandu – http://www.cil.org.np

Palestine Disabled Without Barriers

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● Full members Associated membership

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Our team

Board membersKapka Panayotova, President (Bulgaria)Tove Linnea Brandvik, Vice-President (Norway)Nadia Hadad (Belgium)Armen Alaverdyan (Armenia)Tara Flood (UK)Anna Hallgren (Sweden)Rados Keravica (Serbia)Stelios Kympouropoulos (Greece)Maria Dahl (Sweden)

Senior advisors (voluntary positions)Jamie BollingZara Todd (from February 2018)

StaffInes Bulic Cojocariu, Deputy DirectorFrank Sioen, Advocacy OfficerNatasa Kokic, Campaign CoordinatorMarco Carnesecchi, Office Manager (part time)Kamil Goungor, Development Officer (part time, from October 2018)Teodor Mladenov, Researcher (ULPA Project)Lilia Angelova Mladenova, Project Officer (part time)Zara Todd, Director (until the end of January 2018)Dilyana Deneva, Membership Officer (until the end of March 2018)

VolunteersMiriam Graute (European Voluntary Service)Lauri Heikkinen (European Voluntary Service)Mikel Eruimendia Naiara SantillanaDionysis AntanasiotisMazen Siufi

We wish to thank Zara Todd and and Dilyana Deneva for their commitment to ENIL and their contribution to our work, and wish them all the best for the future. We also thank all our volunteers for choosing ENIL and for their contributions, as well as Jamie Bolling, our former Director, for her continued work as a Senior Advisor. Last but not least, we are grateful to our funders – ULOBA, the Open Society Foundations, STIL and GIL – for their continued generous support and their belief in ENIL.

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European Network on Independent Living (ENIL)7th Floor – Mundo JRue de l’Industrie 101000 BrusselsBelgiumE-mail: secretariat@enil.euWebsite: www.enil.eu

The European Network on Independent Living (ENIL) is a Europe-wide network of people with disabilities. It represents a forum intended for all disabled people, Independent Living organisations and their non-disabled allies on the issues of independent living. ENIL’s mission is to advocate and lobby for Independent Living values, principles and practices, namely for a barrier-free environment, deinstitutionalisation, provision of personal assistance support and adequate technical aids, together making full citizenship of disabled people possible.

ENIL has Participatory Status with the Council of Europe, Consultative Status with ECOSOC, is represented on the Advisory Panel to the EU Fundamental Rights Agency’s Fundamental Rights Platform, and on the Advisory Council on Youth at the Council of Europe.

Contact us

About the European Network on

Independent Living

www.enil.eu