ENIL ANNUAL REPORT 2016 · Web viewENIL ANNUAL REPORT 2016 ENIL ANNUAL REPORT 2016 ENIL ANNUAL REPORT 2016 Table of Contents 2016 in Numbers3 About ENIL4 Overview of Activities6 Campaigning

ENIL ANNUAL REPORT 2016

Table of Contents

2016 in Numbers.............................................................................3About ENIL......................................................................................4Overview of Activities......................................................................6Campaigning for Independent Living............................................11Strengthening ENIL......................................................................12ENIL Youth Network......................................................................13Participation in European Projects...............................................14Working in Partnership.................................................................15Thank you......................................................................................17Annex I: ENIL Board and Staff Members......................................18Annex II: ENIL Representation at Events......................................19Annex III: ENIL Membership.........................................................25Annex IV: Balance sheet 2016.......................................................27

ENIL Brussels Office - Belgium – Mundo J, Rue de l’Industrie 10, 1000 Brussels Tel: 0032 (0)2 893 25 83; website: www.enil.eu; e-mail: [email protected]

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2016 – A Year of Great Loss for ENIL

The European Network on Independent Living (ENIL) experienced a great loss in 2016. Three strong and great people left this world and the Independent Living movement.

Peter Lambreghts was an ENIL board member until 2015 and worked as an ENIL Senior Officer and for our member organisation Onafhankelijk Leven until the day he died. He inspired many with his great commitment, will power and strong vision to change the world and make it a better place, with the full inclusion of disabled people.

Martin Naughton was one of the founders of the Irish Independent Living movement in the early 1990s. His contribution to both the development of Independent Living in Ireland and Europe was outstanding and revolutionary. One of his many achievements was the ENIL Freedom Drive, which was his brainchild and which he established with his colleagues in 2003. ENIL prospered from his leadership and support for over 20 years. He was also instrumental in establishing the Irish ENIL Secretariat in the late 1990s. Dublin remained one of the constant main homes for ENIL for many years thanks to Martin.

Debbie Jolly was a former staff member a long-time board member of ENIL. She was also in the past a member of the Academic Network of European Disability Experts (ANED), the National Union of Journalists, and the editorial board of the journal Disability and Society. Debbie worked tirelessly to defend the rights of disabled people, most recently as the co-founder of the grassroots advocacy group Disabled People Against the Cuts (DPAC).

The movement suffers from this loss.

In memory of our friends, the 2017 Freedom Drive will be dedicated to Martin Naughton, its founder. We will be remembering and celebrating Peter, Martin and Debbie’s lives, and those of other Independent Living


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Heroes – Past, Present and Future during our week in Brussels (24th – 28th September 2017) and with a dedicated publication.


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2016 in Numbers

20,000 people we reached on 5th May – the European Independent Living Day

187 Youth Network members55 events where we spoke about Independent

Living47 European countries where we have

members12 Newsletters published11 fundraising applications submitted6 interns and volunteers hosted4 webinars held4 trainings organised2 study visits facilitated2 surveys launched2 projects in countries neighbouring the EU2 youth study sessions with the Council of

Europe Youth Department1 campaign launched #OurFundsOurRights


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About ENIL

The European Network on Independent Living (ENIL) is a Europe-wide network of disabled people, with members throughout Europe. ENIL is a forum for all disabled people, Independent Living organisations and their non-disabled allies on the issues of Independent Living. ENIL represents the disability movement for human rights and social inclusion based on solidarity, peer support, deinstitutionalisation, democracy, self-representation, cross disability and self-determination. ENIL promotes equal opportunities for disabled people and fights against discrimination in Europe.

ENIL is a member of the Council of Europe Conference of INGOs and has applied for participatory status with the UN Economic and Social Council (ECOSOC).

Our objectives

To promote access to personal assistance in Europe and to improve understanding of Independent Living, as set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (UN CRPD);

To promote the implementation of UN CRPD, and to provide input to the Committee on the Rights of Persons with Disabilities (CRPD Committee);

To monitor the use of European Structural and Investment Funds (ESIF), to promote examples of good practice and to facilitate the implementation of the partnership principle in the use of ESIF;

To address disability discrimination by raising awareness about disability hate crime and improving the capacity of different stakeholders to tackle it;

To build the capacity of ENIL members to monitor access to independent living and promote implementation of the UN CRPD and other laws, policies and practices;

To provide opportunities for the involvement of young disabled people in the Independent Living movement;

To improve ENIL’s organisational capacity to advocate for the rights of disabled people in Europe;

To ensure ENIL’s work is communicated well to different audiences, and to facilitate wide dissemination of outputs;

To strengthen cooperation with other organisations, agencies and initiatives concerned with the rights of disabled people at the EU level and in Member States.


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Our membership

As of December 2016, ENIL has 45 member organisations will full membership in 23 countries, and 21 member organisations with associated membership in 15 countries. In addition, we have a number of full individual members and Youth Network members (full and associated). Our membership covers the entire Council of Europe area. For a complete overview of ENIL membership, please see Annex 3.

Our governance

In 2016, the ENIL Board has consisted of: Maria Dahl and Tove Linnea Brandvik representing the Northern Region, Stelios Kympouropoulos and Marina Voudouri from the Southern Region, Kapka Panayotova from the Eastern Region and Paul Fagan, Nadia Hadad, Debbie Jolly and Zara Todd representing the Western Region. To ENIL’s sadness, Debbie Jolly passed away in November. She was replaced in December by Christian Bayerlein, who had received the most votes after Marina Voudouri at the ENIL General Assembly in 2015.


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Overview of Activities

Raising Awareness on Disability Hate Crime

ENIL held a number of events on Disability Hate Crime in 2016, and has started a new project. On 8 – 9 June, we helped organise a training in Zagreb, Croatia, in cooperation with the Croatian Disability Ombudsman and the OSCE/ODIHR. Miro Griffiths, ENIL’s hate crime advisor, was asked to provide a sociological perspective on the concept of disability and disablement, to explore how this relates to hate crime, and to highlight the structural challenges impacting on police and prosecution services.

During the year, ENIL has joined forces with CEJI – A Jewish Contribution to an Inclusive Europe and other stakeholders in the new project “Facing all the Facts”. The project aims to build the capacities of law enforcement and public authorities to take a victim-centred approach to monitoring and recording hate crime and hate speech through online training. ENIL will be active in writing the training section on disability.

In December, ENIL organised a round table in Brussels, where the results of ENIL’s Survey on hate crime were presented. During the same month, we attended the 2nd meeting of the newly formed EU High Level Group on Combating Racism, Xenophobia and Other Forms of Intolerance. At this meeting, we raised concerns about the fact that disability as grounds for hate crime is not included in the legislation of many Member States. ENIL will continue encouraging Member State representatives to review their legislation and policies on hate crime and making sure that disability is high on their agenda.

Building Capacity on Peer Support

Peer support is one of the pillars of Independent Living and an essential element for the self-determination of disabled people. To obtain information about disabled people’s access to peer support in Europe, and the ways in which peer support is provided, ENIL carried out a survey. Its findings indicate that the concept of ‘peer support’ is still unknown in many countries, and that it lacks state funding. They are available here.

The Peer Support Training, organized by ENIL and CIL Sofia in September, brought together 15 disabled people from 10 countries, who


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http://enil.eu/wp-content/uploads/2016/06/Peer-Support-Survey-Report-2016.pdf

http://enil.eu/wp-content/uploads/2016/12/ENIL-DHC-Survey_Brief-Analysis.docx

were engaged in discussions on the principles of peer support, the role and responsibilities of peer supporters and the development of peer support in Europe. The training resulted in a common definition of ‘peer support’, recommendations and the Facebook group ‘ENIL Peer Support’. The Peer Support Training Manual, produced in 2014, will be updated in 2017.

Promoting the Transition from Institutional Care to Living in the Community

ENIL organised a week-long study visit in Stockholm, involving participants from Bulgaria and other countries, with the aim of sharing key lessons from Sweden’s deinstitutionalisation process. The study visit was attended by 25 participants and resulted in two videos available from ENIL’s YouTube channel (the longer version and the shorter version). One of the participants, Kristina Dudonyte, returned home to Lithuania and started the process of setting up a Centre for Independent Living (CIL).

We submitted a response to the Council of Europe, in relation to their draft Europe Disability Strategy 2017-2023, expressing our concerns about the lack of focus on independent living and deinstitutionalisation.

ENIL’s Senior Officer Peter Lambreghts was one of the three co-chairs of the European Expert Group on the Transition from Institutional to Community-based Care (EEG), starting his 2nd one-year term in July 2016. Jamie Bolling, ENIL’s Executive Director, replaced Peter in September. Together with other EEG members, ENIL helped organise a training for the European Commission officials, and internal and open EEG meetings. We also contributed to events on deinstitutionalisation in Greece, Poland, France and Slovakia. For more information on the work of the EEG, please visit the EEG website.

Monitoring the Use of EU Funds

In June, ENIL published the report ‘Working Together to Close the Gap between Rights and Reality’. The report focuses on the continued and pressing need for action to be taken to enable people with disabilities to live and participate in the community and the crucial role of European Structural and Investment Funds (ESIFs) in achieving this objective. The report proposes a series of questions to assist in the evaluation of Member States’ Operational Programmes (the documents that set out the broad framework of the activities to be funded by ESIFs). It is available here.


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http://enil.eu/wp-content/uploads/2016/06/Working-Together-to-Close-the-Gap.pdf

http://deinstitutionalisation.com/

http://enil.eu/news/independent-living-excluded-from-the-disability-strategy/

https://www.youtube.com/watch?v=aFxYBZ2iXc4&t=4s

https://www.youtube.com/watch?v=aFxYBZ2iXc4&t=4s

https://www.youtube.com/watch?v=dQq_ahU9fbs&feature=youtu.be

http://enil.eu/wp-content/uploads/2012/06/Peer-Support-Training-Manual-Final_281014.pdf

https://www.facebook.com/groups/1126694284045822/

https://www.facebook.com/groups/1126694284045822/

The Petitions Committee (PETI Committee) at the European Parliament commissioned ENIL to write a study about the use of ESIF in Slovakia. The report, published in September, was used by a delegation of MEPs who visited Slovakia to investigate the use of Structural Funds for the building and renovation of institutions for disabled people. It was followed by a report on the situation in the European Union, which was presented in the European Parliament at a workshop for the PETI Committee in November. Both reports are available here.

During the year, ENIL was active in the Structured Dialogue on ESIF Expert Group and the ESF Thematic Networks on Social Inclusion and Partnership, raising concerns about the lack of ESIF support for independent living in the Member States, and Member States’ failure to meaningfully involve disabled people in ESIF use.

Promoting the UN Convention on the Rights of Persons with Disabilities

Having published a Shadow Report on the Implementation of Article 19 of the CRPD in the EU in 2015, ENIL continued monitoring the implementation of the CRPD Committee recommendations. We spoke at the Disability Intergroup meeting where Helga Steven’s report was presented and the European Economic and Social Committee meetings, in preparation of their report ‘Concluding observations of the UN CRPD Committee to the EU – A new strategy for persons with disabilities in the EU’.

ENIL published two fact sheets – one on the actions taken by the EU to implement CRPD Recommendations, and one on the Optional Protocol to the UN Convention on the Rights of Persons with Disabilities (CRPD). The Guide seeks to explain how the Optional Protocol works, and how it can be used by individuals and organisations to claim their rights under the CRPD. It also provides examples of using the Optional Protocol to successfully challenge human rights violations in the EU. The fact sheets are available here.

Together with Disability Rights UK, ENIL facilitated a study visit for the Centre for Independent Living Serbia to London, as part of the project ‘Strengthening political participation of persons with disabilities in the Republic of Serbia’. The study visit - which included a representative of the umbrella DPO, an MP, equality body and election officials - was a success, with the delegation receiving know how on direct payments, adult services, elections, and the work of the All Political Parliamentary Group on Disability in the UK.


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http://enil.eu/reports/

http://enil.eu/reports/

Towards a General Comment on Article 19

In March, ENIL prepared a submission for the Day of General Discussion on Article 19. ENIL’s Director Jamie Bolling and Board Member Kapka Panayotova were invited to speak in Geneva during the Day of General Discussion, the proceedings of which will feed into the General Comment on Article 19.

In order to encourage debate on Article 19 and to discuss different interpretations and challenges, we organized two events – a side event during the 2016 Social Forum of the Human Rights Council in Geneva, in October, and a speed-dating event on Article 19 and Article 32 during the European Disability and Development Week (EDDW) in Brussels, in December.

In addition to this work, ENIL started a project funded by the Open Society Foundations – Mental Health Initiative, as part of which we are developing a background paper for the CRPD Committee on the interpretation of the right to independent living around the world. This background paper will be published in March 2017.

Putting Independent Living on the EU Policy Agenda

The European Commission launched a consultation on the proposed European Pillar of Social Rights (Social Pillar) in March 2016. We took part in this consultation, seeing it as a good opportunity to put the right to independent living higher on the EU agenda and to mainstream a human rights based approach to social policy in all EU policy areas.

ENIL continued following the European Semester cycle, with the aim to ensure that the right to independent living and the need for deinstitutionalisation are taken into account in the Semester process. To this end, we joined a taskforce on the European Semester set up by the European Expert Group for Transition from Institutional to Community-based Care (EEG), the aim of which was to raise awareness among the European Commission officials about the potential of the Semester to facilitate deinstitutionalisation.

ENIL had meetings with a number of MEPs during the year, including MEP Marian Harkin, MEP Richard Howitt, MEP Helga Stevens and MEP Marek Plura. We met with the policy team of MEP Robert Rocherfort on the European Accessibility Act (EEA) and were invited to speak at the European Parliament event on EEA organized by MEPs Tarand and Soltes, and at the hearing on CRPD, organized by MEP Benifei.


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http://enil.eu/news/european-pillar-of-social-rightsor-benefits/

Advocating for a Strong European Accessibility Act

ENIL continued to follow developments in relation to the proposed European Accessibility Act (EAA). We published a Position Paper and joined a task force initiated by the European Disability Forum (EDF). We proposed a number of amendments, which were sent to MEPs, the European Commission and permanent representations. We also met with several MEPs, including the first rapporteur Robert Rochefort, and permanent representations of Flanders, Slovakia and the Netherlands. ENIL’s position was referenced in the Petitions Committee report on the proposed EEA.

Encouraging Leadership among Young Disabled People

Our Youth Leadership Programme was developed for capacity building among young disabled people, so that they can be more active within the Independent Living movement. The specific objectives were to: build confidence and self-esteem of participants; create young multipliers for the Independent Living movement; prepare for the European Independent Living Day in 2017; increase the number of young disabled leaders active in ENIL; and provide participants with an understanding of independent living at the European level outside of their immediate lived experience. Six people participated in the programme in December 2016: Thomas Fadden from the UK had a one-week study visit in CIL Sofia, Bulgaria; Julia Danila from Romania had a one-week study visit in Equal Lives in Norwich, England; Frank Larkin from Ireland, Alice Jorge from Brussels, Glenn Conings and Eddy Schelfhout, both from ENIL’s member Onafhankelijk Leven in Ghent, came to Brussels for one week during the European Disability and Development Week, and participated in several events and a training at ENIL. Feedback from the participants was very positive, and they described it as ‘once in a lifetime’ and ‘a life changing experience’.

Raising Awareness About the Impact of Cuts

The Alliance Against Disability Cuts (AADC) was established by ENIL and brings together the European Foundation Center, the European Disability Forum, Inclusion Europe, Mental Health Europe, Autism Europe, the European Association of Service Providers for People with Disabilities, the European Rehabilitation Platform, the European Network of Users and Survivors of Psychiatry and Disabled People Against the Cuts UK. In 2016, AADC met with the Head of the Disability Unit at the


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http://enil.eu/news/enils-position-on-the-european-accessibility-act/

European Commission Emmanuelle Grange, and with Juan Pablo Bohoslavsky, the UN Independent Expert on the effects of foreign debt.

Peter Lambreghts, who sadly passed away in August, led the work of AADC. The work of the group suffered as result, though it reconvened towards the end of the year. AADC, now coordinated by ENIL’s Advocacy Officer Frank Sioen, decided to focus on raising awareness about the impact of the cuts among MEPs, starting with an information sheet on the impact of cuts and the work of the AADC. The long-term objective remains the adoption of the EP Resolution against the cuts.


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Campaigning for Independent Living

European Independent Living Day – 5th May

The third European Independent Living Day was celebrated on the 5th May around Europe, with the presence of 29 countries. The overall participation increased in comparison with 2015, showing that the Independent Living movement is growing constantly and is becoming stronger.

As in previous years, the goal of raising awareness on Independent Living was successfully achieved, and it was done in various ways. Local TV and radio stations covered many of the events. Individual contributions were shared on social media, making it possible to spread the philosophy of Independent Living far and wide.

EU Funds for Our Rights

In November, ENIL launched a new campaign “EU Funds for Our Rights” during an event in the European Parliament. The campaign, supported by the Open Society Foundations – Mental Health Initiative, is advocating for a better monitoring and complaints system for the use of the European Structural and Investment Funds (ESIF) in relation to transition from institutional care to independent living for disabled people in the EU Member States. We want to encourage the Member States to efficiently spend the EU funds designated for deinstitutionalisation and to ensure the European Commission sets up a more transparent and effective complaints mechanism. In the short term, the campaign is collecting evidence and raising awareness among the EU institutions, Member States and all other relevant stakeholders on the importance of using the EU funds to support independent living. This will be achieved by working with partners at the national level, using social media and building alliances with human rights organisations outside the disability sector. At the end of the year, ENIL organised a meeting with other EU-level NGOs in order to exchange the experience on Structural Funds monitoring. This will be followed by three regional events in the first half of 2017, which will include training session on using Structural Funds to support independent living and a session where experiences with monitoring and complaints from the national level will be shared.


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Strengthening ENIL

Having moved its Secretariat from Dublin to Brussels in the Summer of 2015, ENIL has continued strengthening its position as the voice of user-led disabled people’s organisations promoting independent living at the European level. ENIL’s work in Brussels is guided by an advocacy strategy, which is elaborated on an annual basis and complements the overall work plan.

In addition to ULOBA, several members have committed to funding ENIL’s activities in 2016. ENIL wishes to thank ULOBA (Norway), STIL (Sweden) and GIL (Sweden) for their generous support that allows ENIL to co-fund its projects, including the Operational Grant Agreement with the European Commission (covering 2015 – 2017), the project in Turkey, or projects where ENIL partners with other stakeholders (for example, the Facing all the Facts project led by CEJI). We also thank the Open Society Foundations – Mental Health Initiative for their continued support of our work on deinstitutionalisation and Structural Funds.

ENIL Secretariat in Brussels

The establishment of the ENIL Brussels Office has had a positive impact on ENIL’s work. By being closer to the EU institutions, ENIL was able to improve its advocacy efforts at the European level. We are in a much better position now to organise and attend meetings, including with Members of the European Parliament (MEPs), the European Commission officials, permanent representations and other EU level organisations and institutions. This means that our voice is now heard in most of the disability-related discussions in Brussels.

As highlighted in last year’s Annual Report, the ENIL Brussels Office is located in the Mundo J building at 10 Rue de L'Industrie, near the European Parliament. Marco Carnesecchi is the Office Manager and Frank Sioen the Advocacy and Communications Officer. Natasa Kokic joined the Brussels team in October, as the Coordinator of the ‘EU Funds for Our Rights Campaign’.

Being in Brussels makes it easier for ENIL to attract interns and volunteers to help with the work at the office. During the year, several interns and volunteers joined the team: Miriam Lorenzo Prieto (Spain), Dionyssis Antanasiotis (Belgium), Kristina Dudonyte (Lithuania) and Obada Otabashi (Belgium). Miriam worked full time from June to August, and was funded through an agreement with Europa Innovacion. Dionyssis has been a part time volunteer for 2 days a week since March


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http://gil.se/

http://www.independentliving.org/docs3/stileng.html

http://www.uloba.no/Sider/forside.aspx

and will continue in 2017. Obada volunteered part time from October until December. Kamil Goungor, who was an EVS volunteer at Onafhankelijk Leven and ENIL in 2015, managed ENIL’s Twitter account throughout the year.

ENIL still has a virtual office in Dublin for administrative purposes, until the closure of ENIL Dublin can take place. This will happen once all the contracts that could not be transferred are closed.

ENIL Youth Network

ENIL Youth Network aims to empower and support the involvement of young disabled people in the Independent Living movement and in advocating for human rights in their countries and at the European level. It is open to anyone between 16 and 35 years of age, living in Europe and identifying as a disabled person.

At the end of 2016, the Youth Network had 182 full and 11 associated members. The Youth Network runs four task groups, focusing education, employment, independent living and fundraising and structure of the Youth Network. Two additional groups were established in 2016, on sexuality and relationships, and on IFM-SEI/ENIL collaboration. The Terms of Reference for the task groups are available here.

The main activities of the Youth Network in 2016 were two week-long study sessions, organised in cooperation with the Council of Europe Youth Department, and three webinars. The Youth Network Board Member Agnes Sarolta Fazekas is a member of the Council of Europe’s Advisory Council on Youth.

Study sessions

The first study session of the year, entitled “Supporting young disabled people to explore sexuality and relationships as integral to their social inclusion and independent living”, was held between 17th and 24th April in Strasbourg, France. It brought together 22 young disabled people from 13 European countries. The often avoided, taboo topics of sex, gender-based violence, sexual and reproductive rights and sexual identity, among others, were explored, and a film was produced by the Council of Europe as a result. ‘The Last Taboo’ can be viewed on ENIL’s Youth Tube channel. Full transcript of the video is available here.


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http://enil.us11.list-manage.com/track/click?u=3597fe935f6ba436256f0b641&id=ce2849738c&e=b99562be69

https://www.youtube.com/user/ENIndependentLiving

http://enil.eu/wp-content/uploads/2015/04/Terms-of-Reference-for-ENIL-Youth-Network-task-groups.pdf

The second study session, entitled “All in – creating inclusive and empowering spaces for all”, was organised in cooperated with the International Falcon Movement – Socialist Educational International (IFM-SEI). It took place between the 13th and 20th November, also in the European Youth Centre in Strasbourg. 25 participants from 15 countries were engaged in learning how to create inclusive child and youth organisations, focusing on disability rights and children’s rights.

Webinars

In 2016, the Youth Network organized three webinars – on sexuality and relationships, independent living, and youth employment and inclusion.

Participation in European Projects

Independent Living Network: Promoting the right to independent living of people with disabilities in Turkey

This 15-month-long project, co-funded by the EU and Turkey, under the Civil Society Dialogue scheme, successfully finished in January 2016. The main deliverables, including the Independent Living Manual and a draft Roadmap on Deinstitutionalisation, are available from the ILNET website.

The project was implemented by ENIL, in partnership with the Centre for Independent Living Sofia (Bulgaria) and RUSIHAK (Turkey).

Building the Capacity of CSOs in Belarus

In February 2016, ENIL started a 48-months project in Belarus, in cooperation with Mental Health Perspectives (Lithuania) and the Office for the Rights of People with Disabilities (Belarus). The three key objectives of the project are:

To contribute to the civil society’s realisation of civil, political and social rights of people with intellectual or psychosocial disabilities (PIPD) in Belarus.

To foster social inclusion, enforcement of rights and legal empowerment of PIPD, through active advocacy by local civil society organisations (CSOs).

To strengthen civil society to engage in structural reforms, and build capacity of CSOs to advocate for social inclusion and empowerment of PIPD in participatory decision making processes.


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http://ilnet.enil.eu/

http://ilnet.enil.eu/

As part of the project, ENIL developed and led trainings on networking for Belarus CSOs and activists in four regions of the country. The project continues into 2017, when we will develop and lead training sessions on independent living and on fundraising.

Facing All the Facts

ENIL joined forces with CEJI – A Jewish Contribution to an Inclusive Europe and other stakeholders in the new project “Facing all the Facts”, in October 2016. The project, which is a part of a series of Facing the Facts projects, aims to build the capacities of law enforcement and public authorities to take a victim-centred approach to monitoring and recording hate crime and hate speech through online training. ENIL will be responsible for writing the training section on disability.


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http://www.ceji.org/?q=content/press-release-united-against-hate-crime-european-law-enforcment-agencies-act-tackle-hate

Working in Partnership

ENIL’s cooperation with other groups is based on the recognition of our common objectives and the strength of working together. Such cooperation also allows ENIL to spread knowledge about and advocate for the right to independent living and to address issues such as discrimination, hate crime, social welfare cuts and many others. Many of these collaborations have been mentioned earlier in the report, while others are listed below.

CHANGE: we organised a webinar on co-working with CHANGE, a UK-based organisation promoting the rights of people with intellectual disabilities. The webinar, entitled ‘A New Way Forward in Employing People with Learning Disabilities as a Tool for Independent Living’, was attended by 15 participants.

EU Fundamental Rights Agency (EU FRA): we continue to be represented on the EU FRA Fundamental Rights Platform’s Advisory Council by our Board member Tove Brandvik. ENIL’s Board member Nadia Hadad took part in the EU FRA Fundamental Rights Forum in June.

Eurochild: we are cooperating with Eurochild on deinstitutionalisation within EEG, and are supporting their Opening Doors for Europe’s Children Campaign, which seeks to end institutional care. We also contributed to an event on deinstitutionalisation of children in Belgium, which took place in January 2017.

European Coalition for Community Living (ENIL-ECCL): ENIL-ECCL continued to focus on the use of European Structural and Investment Funds (ESIF) in Central and Eastern Europe and the Baltics, and their role in promoting the right to independent living. The list of ENIL-ECCL members is available here.

European Association of Service Providers for Persons with Disabilities (EASPD): we have worked closely with EASPD on the issue of co-production, and have contributed to the Joint Declaration “Developing Together the Support of Tomorrow”, which was co-signed by several organisations (ENIL, EDF, COFACE Families Europe, Mental Health Europe and Inclusion Europe).

European Platform for Rehabilitation (EPR): Lilia Angelova Mladenova, our Project Officer, has written a report for EPR on co-production.


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http://www.epr.eu/images/EPR/documents/Studies/Co-production_Study_2016/EPR_Co-production_study_2016.pdf

http://www.easpd.eu/en/tags/joint-declaration

http://www.easpd.eu/en/tags/joint-declaration

http://community-living.info/members/

http://www.openingdoors.eu/

http://www.openingdoors.eu/

International Disability Alliance (IDA): we are cooperating with IDA as part of our work in relation to the General Comment on Article 19 CRPD, and have co-organised a side event on implementing the right to independent living around the world during the 2016 Social Forum of the Human Rights Council in Geneva, in October.

International Disability and Development Alliance (IDDC) and the UN Office of the High Commissioner for Human Rights in Brussels (UN OHCHR): we cooperated with the IDDC and UN OHCHR during the European Disability and Development Week, when we organized the roundtable on disability hate crime and the speed dating event on Article 19 and Article 32 CRPD. We have also held several meetings with IDDC to discuss how ENIL can provide training on independent living to their members.

Petitions Committee at the European Parliament: ENIL was able to expand its work on Structural Funds by cooperating with the PETI Committee, who asked us to develop two studies on the use of Structural Funds – in Slovakia, and the European Union. We presented the latter at a workshop on the rights of people with disabilities for members of the PETI Committee in December.

UN Habitat: our late Senior Officer, Peter Lambreghts, was one of the presenters during the Regional conference for Europe, in the framework of the New Urban Agenda policy process. Though our involvement in the UN Habitat III was limited to this intervention, we have helped put independent living on the agenda.

Zero Project/ESSL Foundation: ENIL has continued encouraging members to nominate examples of good practice from their countries for the annual Zero Project report. In addition, we have led one of the panels during the Zero Project conference in Vienna (with a focus on education), which is a great opportunity to forge new partnerships with disability activists from around the world.


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Thank you

Although 2016 was a difficult year for ENIL, everything we have achieved would not have been possible without the support of many individuals and organisations.

ENIL would like to thank all those who have contributed to our work – our members and allies for making the European Independent Living Day on the 5th May another success, our Board and staff for their leadership and the hard work, our volunteer translators, and lastly, our interns and volunteers Miriam Lorenzo Prieto, Dionyssis Antanasiotis, Kristina Dudonyte, Kamil Goungor and Obada Otabashi for helping at our Brussels Office and with various activities. Without you, we could not have achieved nearly as much.

Thank you also to the ENIL Youth Network Board and members, which have been very active and have succeeded in expanding the Network’s activities.

Finally, ENIL has many allies to whom we wish to extend our thanks and appreciation, as together we put Independent Living higher on the European agenda and promoted a better world for us, disabled people.


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Annex I: ENIL Board and Staff Members

Board members

Kapka Panayotova, BulgariaNadia Hadad, BelgiumPaul Fagan, IrelandDebbie Jolly, UK (until October 2016)Tove Linnea Brandvik, NorwayMaria Dahl, SwedenStelios Kympouropoulos, GreeceMarina Vouduri, ItalyZara Todd, UKChristian Bayerlein (from December 2016)

Advisory Board members

Raffaello Belli, ItalyJohn Evans, UKGordana Rajkov, SerbiaSue Bott, UKAdolf Ratzka, SwedenCorina Zolle, GermanyMartin Naughton, Ireland (until October 2016)Vibeke Maroy Melstrom, Norway

Staff members

Jamie Bolling, Executive DirectorInes Bulic, Policy Officer and Projects Manager/ECCL CoordinatorFrank Sioen, Advocacy Officer Marco Carnesecchi, Office ManagerDilyana Deneva, Youth and Membership CoordinatorPeter Lambreghts, Senior Officer (until August 2016)Lilia Angelova-Mladenova, Project OfficerNatasa Kokic, Campaign Coordinator (since October 2016)


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Annex II: ENIL Representation at Events

EVENT TITLE

ORGANISER

SPEECH TITLE

PLACE DATE ENIL REP.

Advisory Council on Youth meeting

Council of Europe

Strasbourg

27-30 January

Agnes Sarolta Fazekas

The Future of Care - A Roundtable

Uni Europa, The European Services Workers’ Union

Roundtable Speaker Hosted By Jean Lambert, MEP

Brussels, European Parliament

24 February

Peter Lambreghts

European Disability Forum Meeting with ASEAN Countries

European Disability Forum

Roundtable Brussels 26 February

Frank Sioen

APF Conference

APF (Association Des Paralysés De France)

“Personal Assistance – Un Droit En Suède!”

Paris 29 February

Jamie Bolling

Mundo-General Assembly

Mundo Presentation of ENIL at the General Assembly

Brussels 11 March

Frank Sioen

From Global to Local - Building Inclusive Local Communities with an EU Perspective

European Disability Forum

“The UN CRPD and the Building Of Local Inclusive Communities”

Amsterdam

11-13 March

Peter Lambreghts

Seminar On The Transition From Institutional To Community-Based Care

Polish Ministry of Economic Development, Supported by EEG and European Commission

“Testimony: Support That Enables Community Living”; and“Model of Community Based Support for Persons with Disabilities”

Warsaw 14-15 March

Kamil Goungor


Council of Europe

Budapest 23 March



22

APF General Assembly

APF (Association Des Paralysés De France)

Paris 25 March

Jamie Bolling

European Youth Forum (EYF) ‘Council of members emergency meeting’

European Youth Forum (EYF)

Presentation on Accessibility

Brussels 16 April Zara Todd

Final Conference of the European Project for Quality!

Personal Care and Household Services Europe

“For Better Quality of Jobs and Services: Presentation”

Brussels 23 April Nadia Hadad

Independent Living Day Conference

Lisbon CIL “2016 Independent Living Day Presentation -Results Of Independent Living”

Lisbon 05 May Frank Sioen

Seminar in Ankara

Panel Ankara 4-5 May Marco Carnesecchi

National Meeting between Youth and Local Decision Makers

Slovenian Youth Council and the Youth Network MaMa

Ljubljana 13 May Aleksandra Surla

EESC Public Hearing "Concluding Observations of the UN CRPD Committee to the EU

EESC (European Economic and Social Committee)

Contribution from the floor

Brussels 17 May Nadia Hadad/Frank Sioen

Roundtable ‘The transition from institutional to family and community-based care’

Greek Government

Athens 18 May Kamil Goungor

European Youth Event

European Youth Forum

Panel Strasbourg

20-21 May

Zara Todd


23

(EYE)Symposium (Un)Equal Europe

Budapest 30 May - 1 June

Aleksandra Surla

European Accessibility Act (EAA) Conference

MEP Tarand and Šoltes

“How To Ensure Access For All”


01 June Frank Sioen

“Gender Equality Matters” Seminar

Council of Europe

Strasbourg

1-3 June Embla Agustsdottir

Eastern Partnership Civil Society Forum: Working Group 1 Conference

Eastern Partnership Civil Society Forum

Improving Conditions For Civil Society Organisations In Shifting Environment

Brussels 02 June Nadia Hadad

Congress of the Third Sector 'Grow Socially'

Bureau of the Third Sector

“The Right to Live In the Community”

Barcelona 14-17 June

Peter Lambreghts

Freedom Fighters Festival

What/Who Is the European Network On Independent Living?

Amsterdam

25 June Frank Sioen

Hearing with Dutch Presidency of EU Council on EAA

Council of the EU

“Making the EAA Work”

Brussels 27 June Peter Lambreghts

Stakeholders Meeting on Web Accessibility

The Permanent Rep. of Flanders

Panel Brussels 27 June Frank Sioen

Seminar about the Implementation of the UN CRPD

PFON (Polish Disability Forum)

“The Importance Of Disability Definition for the Concept of Independent Living”

Warsaw 28 June Kamil Goungor

Tranzit - Seminar on youth work and youth policy practices in support of

Council of Europe

Budapest 5 - 7 July Kamil Goungor


24

young people’s transition to autonomy and work lifeDisability Intergroup

European Parliament

Panel Strasbourg

07 July Frank Sioen

UN CRPD Committee Open Session

UN CRPD Committee

Oral Statement from the European Network on Independent Living

Geneva 15 August

Nadia Hadad

Debate In the Framework of the Project: “Implementation of the UN CRPD – A Common Cause”

PFON (Polish Disability Forum)

“The Implementation of the Right to Live In the Community of Persons with Multiple Disabilities and High Support Needs, and the Independent Living Philosophy”

Wroclaw 15 -16 September

Kamil Goungor


Council of Europe

Mainz 21 - 22 September


COFACE Seminar on the European Pillar of Social Rights

COFACE – Families Europe

Panel Brussels 27 September

Frank Sioen

Seminar on ESF and ERDF Investment SupportingDeinstitutionalisation and Community Based Care

Polish Ministry of Health, Supported by EEG and European Commission

“Support that Enables Community Living and the Example of Swedish Personal Assistance Model”; and“Using Structural Funds to Support

Warsaw 6 - 7 October

Kamil Goungor


25

Independent Living – Learning from Mistakes”

Third Compass Forum on Human Rights Education

Council of Europe

Budapest 4 - 8 October

Zara Todd and Gatis Caunitis

ERA Conference: EU Disability Law and the UN Convention on the Rights of Persons With Disabilities

ERA (Academy Of European Law)

My Human Rights Through Independent Living?

Trier 13 - 14 October

Nadia Hadad

IF Conference

The International Federation for Spina Bifida and Hydrocephalus

“Local and EU Level Advocacy for Independent Living of Persons with Disabilities”

Ghent 14 October

Frank Sioen

Conference ‘Social Rights in Times of Crisis: the Youth Perspective’

European Youth Forum in cooperation with Friedrich Ebert Foundation

Sofia 17 October

Charlie Willis


Council of Europe

Strasbourg

17 - 19 October


EASPD - 20th Anniversary Conference

EASPD (European Association of Service Providers for Persons with Disabilities)

“The role of Personal Assistance in Deinstitutionalisation” (Workshop ‘Success Factors in Community Living Support’); and closing remarks

Brussels 20 October

John Evans, Ines Bulic and Nadia Hadad


26

Conference on Disability and Sexuality

Oslo 21 October

Emily Yates

COFACE Berlin Conference on Digitalization

COFACE – Families Europe

“Digitalization and Independent Living”

Berlin 8 November

Frank Sioen

Workshop on the Rights of Persons with Disabilities

Committee on Petitions, European Parliament

Presentation of the Report “European Structural and Investment Funds and People with Disabilities in the EU”


9 November

Ines Bulic and Camilla Parker

Barrier-Free City for All

Eurocities Keynote address

Brussels 14 November

Frank Sioen

EPR Event on Co-Production

EPR (European Platform For Rehabilitation)

Presentation of a study on co-production; and panel member


Lili Angelova Mladenova and Nadia Hadad

10th Anniversary Of OVI Madrid

Oficina de Vida Independiente (OVI) Madrid

“ENIL’s Role in the Independent Living Movement in Europe”

Madrid 24 November

Dilyana Deneva

European Day of Persons with Disabilities 2016

EC (European Commission)

Panel 4 - The Right to Independent Living (Personal testimony)


Kapka Panayotova

Roundtable “Building on the Promise of the European Structural and Investment Funds into the Future”

Community Living for Everyone: Structural Funds Watch Initiative

Presentation in the session ‘The Reality – National Level Experiences’


1 December

Natasa Kokic

EP Roundtable “Developing

EASPD (European Association

Panel Brussels 6 December

Frank Sioen


27

More Inclusive Labour Markets For Persons With Disabilities”

of Service Providers for Persons with Disabilities)

EP Roundtable Tomorrow: The UN CRPD: Towards a Full Implementation Across Europe

MEP Benifei “The UN CRPD: Towards a Full Implementationacross Europe”

Brussels 08 December

Frank Sioen

IDDC Panel Discussion: ”Empowering Women And Girls With Disabilities – from Disability to Gender Mainstream Advocacy Work”

IDDC (International Disability And Development Consortium)

Panel Member

Brussels, Nordrhein Wesfalen Representation

8 December

Nadia Hadad

EVA Event on Article 19 and Deinstitutionalisation

EVA (Ensemble Pour Une Vie Autonome)

“Bonnes Définitions Et Interprétations De La Vie Autonome Et D’une Offre De Services Tels Que Définis Dans L’article 19”

Charleroi 12 December

Nadia Hadad

Roundtable on the Progress/Regression in the Process of Deinstitutionalisation in Slovakia

SOCIA Foundation and Platform for Community Services ‘Z Domova Domov’

“Living Independently and Being Included in the Community – Making the Most out of ESIF Funds”

Bratislava 19 December

Ines Bulic


28

Annex III: ENIL Membership

Numbers28th December 2016

Full members Associated members TOTAL

Organisations 45 21 66

Individuals 121 59 180

Youth network

179 8 187

TOTAL 345 88 433

Countries

Type of member

Countries

ENIL Full Member Organisations

Armenia, Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Cyprus, Finland, France, Germany, Italy, Luxembourg, Macedonia, Malta, Montenegro, Norway, Portugal, San Marino, Serbia, Slovenia, Spain, Sweden, Switzerland, United Kingdom (23)

ENIL Associated Organisation Members

Albania, Bangladesh, Belarus, Bosnia and Herzegovina, Cameroon, Croatia, Cyprus, Georgia, Hungary, Latvia, Malta, Palestine, Poland, Romania, Turkey (15)

ENIL Individual Members

Belgium, Bosnia and Herzegovina, Bulgaria, France, Georgia, Germany, Greece, Iceland, Ireland, Italy, Netherlands, Norway, Poland, Romania, San Marino, Serbia, Spain, Sweden, Switzerland, United Kingdom (20)

ENIL Associated Individual Members

Albania, Argentina, Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, France, Georgia, Ireland, Italy, Iraq, Lithuania, Netherlands, Norway, Pakistan, Sweden

ENIL Youth Network Full Members

Albania, Armenia, Azerbaijan, Belgium, Bosnia and Herzegovina, Bulgaria, Estonia, France, Georgia, Germany, Greece, Hungary, Iceland, Italy, Latvia,


29

Lithuania, Macedonia, Moldova, Montenegro, Netherlands, Norway, Poland, Portugal, Slovenia, Spain, Sweden (26)

ENIL Youth Network Associated Members

Albania, Armenia, France, Georgia, Greece, India, Morocco, Norway, Poland, Sweden, USA (11)

All represented countries

Albania, Argentina, Armenia, Austria, Azerbaijan, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, India, Ireland, Italy, Iraq, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Moldova, Montenegro, Morocco, Netherlands, Norway, Pakistan, Poland, Portugal, Romania, San Marino, Serbia, Slovenia, Slovakia, Spain, Sweden, Turkey, Ukraine, United Kingdom, USA

TOTAL NUMBER OF COUNTRIES

45


30

Annex IV: Balance sheet 2016

Financial Report 2016/2015EUROPEAN NETWORK ON INDEPENDENT LIVING LIMITED

Income and expenditure accountfor the years ended 31st December 2016* and 2015

2016 2015

€ €

Turnover: 537,480 497,913

Administrative Expenses (582,008) (482,824)

Surplus on ordinaryactivities before taxation (44,528) (15,089)

Tax on Surplus on ordinary activities - -

Retained Surplus for the year (44,528) (15,089)

Retained Surplus brought forward 23,958 8,869

Retained Surplus Carried Forward 68,486 23,958


31

EUROPEAN NETWORK ON INDEPENDENT LIVING LIMITEDBalance sheet as at 31st December 2016*

31/12/16 31/12/152016 2015

€ € € €

Current assets

Debtors 71,388 1068,577Cash at bank and in hand 154,422 35,671

225,810 142,248

Creditors: amounts fallingdue within one year (157,324) (118,290)

Net current assets 68,486 23,958

Total assets less currentliabilities 68,486 23,958

Net assets 68,486 23,958

ReservesRevenue reserves account 68,486 23,958

Members funds 68,486 23,958

*Financial Audit to be completed


32

Documents

ENIL ANNUAL REPORT 2016 · Web viewENIL ANNUAL REPORT 2016 ENIL ANNUAL REPORT 2016 ENIL ANNUAL REPORT 2016 Table of Contents 2016 in Numbers3 About ENIL4 Overview of Activities6 Campaigning