ENIL ANNUAL REPORT 2014 with SUMMARY of 2013

First we took Strasbourg and then we take Brussels! It is with pleasure I address ENIL members again after another two-year period of promoting Independent Living (IL) in Europe. ENIL is growing more than ever and succeeding in promoting IL and reaching new stakeholders. We can still though not sit back as we know too well the many threats we have to meet with head up. We know that some of us have lost services – making life even more difficult when we had services that are most often still not enough to allow us to live lives with full inclusion in society.

The EU is being analyzed on how it is implementing the UN CRPD and we are worried about the misuse of our terminology and how governments claim the support of IL while the reality is different. In some “new welfare” countries and others, new institutions are built as a copy of “good practice” or only solution to take care of disabled people, the medical model is still applied, personalized assistance does not exist, new initiatives are introduced that result in segregation of disabled persons.

Financial cuts are still a reality across the European Union and are causing havoc for our members. The risk of people returning to institutions as they no longer have access to services which support them to live in the community as they are being dismantled is growing closer.

The ENIL board found it important to open a Brussels office and did so in March 2015. There are two employees working in the office and ENIL will be recruiting interns. This gives you the opportunity when visiting MEPs in Brussels to come and visit the ENIL office and express your interest in cooperation, your fears or the support you need.

ENIL now has members in over 40 countries. ENIL is active in various projects with one being in Turkey. The growing EU network with many new allies is due to the work of the active ENIL board members and committed staff and ENIL members.

Energy, determination and commitment are our strength. Together we are a strong grass-root organization, unique with not being an umbrella organization. ULOBA has been true to ENIL by continuing funding it and with this allowing for payment of the co-funding of projects. The ENIL board and staff express their gratitude.

New projects are in the pipeline. Study visits, webinars and many other activities are planned. ENIL welcomes members’ suggestions and ideas, so please contact us at secretariat@enil.eu so that we can increase our cooperation.

Jamie Bolling

ENIL – Executive Director

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Table of Contents

I. Introduction.......................................................................................................................................3Our goals and objectives.................................................................................................................................3Working in partnership...................................................................................................................................4

II. ENIL Activities within the project “Proud, Strong and Visible – Promoting Choice, Control and Participation for Disabled People in Europe”........................................................................................4

1. Achieving Independent Living through personal assistance and peer support..............................................42. Supporting the employment of disabled people through access to Independent Living...............................43. Challenging discrimination and human rights abuses against disabled people.............................................54. Strengthening the voice of disabled people in policy and decision making at the EU and national level.......6

III. Other activities and projects............................................................................................................6

1. European Coalition for Community Living (ECCL)...............................................................................61.1. Shadow Report on the Implementation of Article 19 of the UN CRPD in the European Union...................6

2. ENIL Youth Network..........................................................................................................................72.1. Study Session “Understanding and countering multiple discrimination faced by young people with disabilities in Europe”.....................................................................................................................................72.2. MapAbility...............................................................................................................................................72.3. Participation in the conference in San Marino..........................................................................................8

3. Participation in European projects....................................................................................................83.1 Learnabil-IT...............................................................................................................................................83.2. ELOSH......................................................................................................................................................83.3. DISCIT: Making persons with disabilities full citizens................................................................................93.4. Independent Living Network: Promoting the right to independent living of people with disabilities in Turkey............................................................................................................................................................9

4. Cooperation with other organisations.............................................................................................104.1. Zero Project 2015...................................................................................................................................104.2. Side event on Independent Living at the United Nations in Geneva........................................................104.3. European Expert Group on the Transition from Institutional to Community-based Care (EEG)................104.4. Fundamental Rights Platform of the EU Fundamental Rights Agency......................................................104.5. European Structural and Investment Funds structured dialogue group of experts..................................11

5. Participation in conferences and other events................................................................................11

6. Thank you.......................................................................................................................................13

7. ENIL Summary Activity 2013............................................................................................................13

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I. Introduction

This ENIL annual report for 2014 includes a summary of 2013 activities at the end. Funding for 2013 was as in 2014 mainly received from the European Commission through the Progress Program and from ULOBA – the main Independent Living organisation in Norway.

Our goals and objectivesIn 2014, the European Network on Independent Living (ENIL) implemented the European Comission (EC) funded project “Proud, Strong and Visible – Promoting Choice, Control and Participation of Disabled People in Europe”, as well as other projects with the general aim to advance Independent Living, promote equal opportunities for disabled people and to fight against discrimination in Europe.

The goal of the project "Proud, Strong and Visible - Promoting Choice, Control and Participation of Disabled People in Europe" was to facilitate the implementation of Article 19 (Living independently and being included in the community) of the UN Convention on the Rights of Persons with Disabilities (CRPD) by the Member States and the European Union.

The project sought to collect data, identify good practice and offer recommendations to the relevant stakeholders on how to ensure the full inclusion and participation of disabled people in the community. It also addressed the current threats to implementation of Article 19, including the impact of the cuts in public spending on the support services for disabled people and disability hate crime.

The ENIL objectives were implemented through a series of activities: meetings, a study visit, a roundtable, a seminar, a training, webinars and through publishing toolkits, policy guidance and awareness raising materials, aimed at disabled people, the local and national Governments, the EU institutions, service providers and other stakeholders. The project updates and results were disseminated through a monthly newsletter, and through ENIL's website and Facebook pages. All activities aimed to promote the involvement of disabled people in policy and decision making at all levels - local, national and European.

ENIL’s other projects generally followed the same direction, but their goals and objectives went beyond the scope of the “Proud, Strong and Visible” project. They ranged from providing new knowledge about how the EU Member States and the European Union are able to achieve full and effective participation of persons with disabilities in society and the European economy (DISCIT); to providing expertise on the topic of accessibility in higher education institutions in Europe (MapAbility); to raising awareness about the importance of human rights in countries that are still ‘terra incognita’ on the map of Independent Living (a conference in San Marino); and transferring innovative learning results and training materials on integrated support and housing to a number of other European countries (ELOSH). All these projects, as well as other activities outlined in this report, contributed to ENIL’s mission to promote human rights and social inclusion based on solidarity, peer support, deinstitutionalisation, democracy, self-representation, cross-disability and self-determination.

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Working in partnership

In order to achieve the above mentioned objectives, ENIL worked in partnership with three leading national disability organisations – the Centre for Independent Living (CIL) Sofia (Bulgaria), Onafhankelijk Leven (Belgium) and Disability Rights UK (United Kingdom), each taking a lead in different workstreams. The four workstreams are presented below, together with their most significant outcomes and deliverables.

II. ENIL Activities within the project “Proud, Strong and Visible – Promoting Choice, Control and Participation for Disabled People in Europe”

1. Achieving Independent Living through personal assistance and peer supportFour main activities were implemented as part of this workstream, in cooperation between ENIL and the CIL Sofia.

A survey Comparing the Cost of Independent Living and Residential Care summarised the available information from eight countries: Belgium (Flemish part), Bulgaria, England, Iceland, Italy, France, Slovenia and Sweden, collected during 2014. It aimed to provide information about the costs of institutional/residential care and whether disabled people in these eight countries are able to receive support to live independently in the community. In relation to support in the community, the survey looked at what such support entails, who is entitled to it, how it is funded, and whether it is adequate to facilitate the full inclusion and participation of disabled people in society. Information from the questionnaires was complemented by desktop research, looking at the availability of Independent Living supports, the cost of Independent Living, availability of data about the cost of Independent Living, benefits, barriers and personal budgets.

On 21 June 2014, a training of trainers on peer support was held at the CIL Sofia with eleven participants from Bulgaria and Macedonia. They were provided with the needed skills to become peer supporters in their communities and to assist other disabled people to live independently. A training manual containing useful information about peer support and tips from the training was produced after the event and made available on ENIL’s website.

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Photo: Peer support training, 21st June, Sofia (Bulgaria)

In the second half of the year, ENIL organised a roundtable on the portability of personal assistance within the European Union in the European Parliament (held on 18 November 2014). The event aimed to highlight the barriers faced by disabled people who want to move to another EU country. Finally, a Myth Buster on Independent Living was published, with cartoons by Dave Lupton of Crippen Cartoons, dealing with some of the most common misconceptions about disabled people, independent living and personal assistance. The myth buster is currently being translated into different languages, including Bulgarian, Flemish, Lithuanian and Slovenian.

Photo: Roundtable on portability of PA, European Parliament, Brussels (Belgium)

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2. Supporting the employment of disabled people through access to Independent LivingThe topic of employment, one of the key priorities of the EU, was the focus of ENIL’s work throughout 2014. In this respect, two webinars were organised aimed at young disabled people. The first one, focusing on inclusive education (“Education – is it for all?”, 29 April), was attended by 20 people from across Europe who shared their personal experience and learned from the lived experience of others. The emphasis was on the inclusion of people with different impairments in the education system and in society as a whole. This was followed by a webinar on employement, entitled “Employment of disabled people in Europe” (23 October). This webinar focused on raising awareness among disabled people about their right to employment, encouraging them to pursue their goals and to be ambitious about finding a job they are interested in.

ENIL’s significant experience of working with organisations and individuals at grassroots level has led to the conclusion that Centres for Independent Living (CILs) can be powerful motivators and life-changers for many. Therefore, a series of activities throughout 2014 were aimed at understanding and promoting the role of CILs. A survey on the benefits of setting up CILs was carried out in eight countries, looking at their role in increasing employment of disabled people, providing peer support and facilitating de-institutionalisation. The survey also aimed to look into the methods used by CILs for capacity building. Results have been compiled in a Toolkit on the Role of CILs in Supporting Employment of Disabled People, which also provides advice on how to establish a CIL. The Toolkit is aimed mainly at disabled people, but also at other stakeholders who may be able to support the work of the CILs or benefit from the activities they provide (such as governments, families of disabled people, employers, businesses etc.).

Finally, a study visit to the SPECTRUM CIL in Southampton, England took place between 9 and 11 September 2014. A total of 6 young Independent Living activists from five European countries were selected to take part. The specific objective of the study visit was to discuss the role of CILs in promoting active citizenship of disabled people, especially through employment. The participants were either already working for a CIL in their country or were planning to establish one. The trainers, from among SPECTRUM staff and consultants, gave an overview of the organisation’s structure and introduced the philosophy and methods that all of their work is based on. Undoubtedly, among the most positive outcomes of the study visit is the new Greek CIL i-living, which was estabished by one of the study trip’s participants.

Photo: Study vivsit in SPECTRUM CIL in Southampton, UK

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3. Challenging discrimination and human rights abuses against disabled peopleIn 2014, the issue of the disproportionate effect of austerity measures, imposed across the EU, on the lives of disabled people, remained high on ENIL’s agenda. On 27 February, ENIL launched the Campaign “Stop Disability Cuts”, which culminated on 5 May – the European Independent Living Day - with simultaneous actions taking place in 14 countries across Europe. The Campaign highlighted the impact of the cuts on everyday lives of disabled people in the Member States. A dedicated website was launched in cooperation with the European Foundation Centre (EFC) and the European Disability Forum (EDF) at www.stopdisabilitycuts.eu. It allowed for sharing of planned activities and highlighted cases showing the impact of cuts on disabled people.

Another important area of work in 2014 was disability hate crime. A two-day seminar on hate crime against disabled people was organised together with Office for Democratic Institutions and Human Rights (ODIHR) at OSCE and the Croatian Disability Ombudsman. It took place in Zagreb, Croatia on 13 and 14 October, bringing together 53 participants from different Ministries, law enforcement agencies, the judiciary, equality bodies and the civil society.

Photo: Seminar on hate crime against disabled people in Zagreb, Croatia

In preparation for the Zagreb seminar, Disability Hate Crime – a guide for disabled people’s organisations, law enforcement agencies, national human rights institutions, media and other stakeholders was drafted by the project and conference partners (in English and Croatian). The guide was distributed to participants and finalised after the seminar, taking into account feedback received during the event.

4. Strengthening the voice of disabled people in policy and decision making at the EU and national levelThe year 2014 was an important year for the European community, not least because of the European elections which took place in May. ENIL understands how vital it is that Members of the European Parliament (MEPs) are aware of the pertinent issues affecting disable people striving to achieve Independent Living. ENIL therefore put efforts into raising awareness among disabled people and candidate MEPs about the importance of achieving Independent Living and other rights set out in the UN Convention on the Rights of Persons with Disabilities.

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In this respect, a questionnaire was sent to candidate MEPs (from all political groups) on how they aim to promote the rights of disabled people, with results were publicised on ENIL website. Before the elections, a Manifesto on Independent Living with recommendations on how MEPs should support the right to Independent Living in the EU and beyond was published and disseminated to all MEPs and our members. It included ten key demands that have been translated into 10 languages by Independent Living activists from within our network.

2014 Manifesto on Independent Living cover

In order to encourage disabled people to vote in the European elections and engage with the process, a Toolkit for Grassroots Organisations on Participating in the EU Parliamentary Elections was produced. It outlined the importance of voting and provided advice to disabled people on how to identify candidates that support the right to independent living. The Toolkit was made reader-friendly, in the hope that everyone can use it, regardless of their knowledge of EU institutions or policies.

Finally, a Factsheet on the Implementation of Article 4 of the UN CRPD was published in December. Article 4 of the UN CRPD requires State Parties to involve disabled people in all actions and policies which concern them. The Factsheet covered the following issues: a) areas of good practice in relation to engaging and working with disabled people, in line with Article 4(3) of the CRPD; b) ‘Lessons learned’ in respect of examples of poor practice; and c) guidance as to how Governments can improve their approach to co-producing services and policies with disabled people. It targets disabled people, their allies, community groups, local and national governments officials.

All the resources produced as part of this project are available at: http://www.enil.eu/reports/

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III. Other activities and projects

1. European Coalition for Community Living (ECCL)

1.1. Shadow Report on the Implementation of Article 19 of the UN CRPD in the European UnionIn the framework of ECCL, ENIL’s initiative on de-institutionalisation, a Shadow Report on the Implementation of Article 19 of the UN CRPD in the European Union “Realising the Right to Independent Living: Is the European Union Competent to Meet the Challenges?” was launched in November. The report, funded by the Open Society Foundations – Mental Health Initiative, seeks to provide the Committee on the Rights of Persons with Disabilities with information that will be of assistance when assessing the extent to which the EU has complied with its obligations under Article 19 of the UN CRPD.

The launch event, which took place on 14 November in Brussels, brought together European Commission officials (most notably the Head of the Disability Unit at DG Justice Maria-Luisa Cabral), representatives of the civil society, the European Ombudsman and the UN OHCHR regional office in Brussels. After the presentation of the Shadow Report, much of the debate centred on the use of Structural Funds and whether the European Commission can guarantee that services which are institutional in character or where human rights abuses take place will not be funded in the future.

The European Union will be reviewed by the CRPD Committee in 2015 and ENIL plans to take part in both the April and September sessions in Geneva, in order to promote the Shadow Report.

The Shadow Report is available at: http://www.enil.eu/reports/

2. ENIL Youth NetworkIn 2014, the ENIL Youth Network was strengthened. Fresh ideas about the future of the Independent Living movement have been generated from the young people involved in our activities, which ENIL can focus on in the coming years. Below you will find a brief description of the events implemented throughout the year as part of our youth work.

2.1. Study Session “Understanding and countering multiple discrimination faced by young people with disabilities in Europe”

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Photo: Study session 2014 in Strasbourg, France

Between 29 June and 6 July, ENIL organised a week-long study session for young disabled people entitled “Understanding and countering multiple discrimination faced by young people with disabilities in Europe”. The session was organised with the support of the Council of Europe Youth Department and took place at the Council of Europe Youth Centre in Strasbourg, France.

The aim of the study session was to raise awareness among young disabled people about multiple discrimination and to discuss ways in which discrimination can be prevented and countered, as well as to develop a youth-led campaign on multiple discrimination. It brought together a diverse group of young disabled people (19 persons from 15 countries) and resulted in a number of lively sessions and debates, promoting tolerance and solidarity among the participants.

One key outcome of the study session was the video campaign “Think Different, Think Equal”, consisting of a series of four videos (http://www.enil.eu/multimedia/think-different-think-equal-campaign/). These were created with the aim to empower and raise awareness about the rights of disabled people in Europe. Developed entirely by the study session participants, the video campaign explores the concept of intersectionality and helps young disabled people to understand and embrace their multiple identities. Its goal is to build young people’s capacity to identify and respond to discrimination by knowing their rights and the protections available, as well as to encourage self-advocacy.

2.2. MapAbilityIn 2014, ENIL was officially invited to be a partner organisation of the Erasmus Student Network (ESN) in its project on student mobility ‘MapAbility’. MapAbility’s primary aim was to conduct extensive research into accessibility of higher education institutions in Europe. Based on this, an online map was launched (http://esn.org/mapability-map), providing disabled students with a guide to accessibility of European universities. Members of the ENIL Youth Network provided input into the map. In addition, Zara Todd, one of the founders of the ENIL Youth Network, represented ENIL at a MapAbility conference in Belgium, where she shared her own experience as a student in the UK. Zara is currently working towards her PhD in London.

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2.3. Participation in the conference in San MarinoENIL was invited to take part in the first official Independent Living conference in San Marino, held on 3 December - the International Day of People with Disabilities. Dilyana Deneva, Coordinator of the ENIL Youth Network, held a presentation entitled “Mobilization of Youth”. In her speech, she highlighted the need to value and give credit to the pioneers in the fight for a life with dignity for all, but also to recognise fresh ideas from the next generation. Therefore, she called for an investment into increasing the capacity, skills and competences of young people, as means of empowering them and providing opportunties for realising their potential.

Photo: Meeting with the Captain Regent of San Marino

3. Participation in European projects

3.1 Learnabil-ITENIL was a partner in the Learnabil-IT project, which ran throughout 2014. Learnabil-IT promoted freedom of choice, self-determination, participation and inclusion of disabled people in the field of rehabilitation and employment.

One of ENIL’s contributions to the project was a survey on the employment experiences of young disabled people, aimed at identifying barriers to employment and the available support. It was evident from the responses that disabled people find that the right to work is one of their fundamental human rights. However, in order for full inclusion to be achieved, crucial changes need to take place at all levels – from the medical (being sick and ‘invalid’ for work) to social model, to effective policy strategies stimulating and investing in capacity building and awareness raising.

For more information, please see: http://www.epr.eu/index.php/about-epr/epr-projects/502

3.2. ELOSHSince October 2013, ENIL has been working with EASPD, SITRA, FEANTSA, Housing Europe and Mental Health Europe, as well as seven organisations in Italy, the Netherlands, Greece, Finland, Slovenia, France and Ireland on a project focused on developing training for integrated housing and

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support for disabled people (incl. people with mental health problems) and homeless people. The aim of ELOSH – the European Core Learning Outcomes for Integration of Support and Housing – is to transfer innovative learning results and training materials on integrated support and housing, developed by SITRA in the UK, to a number of other European countries. ENIL’s role in the project is to support the partners in working in a ‘co-productive’ way with the service users and in running the local coalitions. To this end, ENIL coordinated sessions on ‘co-production’ and working with the local coalitions during transpartnership meetings in London and Athens, and has planned a one-day workshop on ‘co-production’ for all the project partners, to be held in Februaray 2015 in Amsterdam.

The final project conference will take place in September 2015 in Brussels, when the training pack on integrated housing and support in English and six other languages will be launched.

For more information, please see: www.elosh.eu

3.3. DISCIT: Making persons with disabilities full citizensDISCIT Project, in which ENIL is a member of the European Stakeholder Committee (represented by Kapka Panayotova), aims to provide new knowledge about how the EU Member States and the European Union are able to achieve full and effective participation of disabled people in society and the European economy (Active Citizenship). By applying an institutional approach to Active Citizenship, DISCIT examines whether the EU Member States and the European Union have the optimal balance between different types of policies (social benefits, social services and social regulation) to promote Active Citizenship for persons with disabilities, clarifies how to improve this balance and through this, contributes to realizing the ambitions of the EU 2020 strategy. An essential task of DISCIT is to identify more effective ways to remove and prevent physical, attitudinal, social and organisational barriers to participation on an equal basis with others, in a context of rapid social, economic and environmental change and emerging panoramas of impairments across Member States.

During 2014, several events were held and the preliminary results of the life course interviews were presented. It was shown that the available statistics have weaknesses that undermine their use for knowing what works and what doesn’t work in disability policy. The project pointed out the need to know more about why there are such big differences between European countries in the proportion of people reporting they have a disability. Moreover, we need to use more effectively national times-series data to examine the effects of new policy measures.

For more information, please see: www.discit.eu

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

Photo: Project logo

In October 2014, ENIL, in cooperation with the Centre for Independent Living Sofia (Bulgaria) and RUSIHAK (Turkey) started a 15-month long project aimed at promoting the right to independent living in Turkey. The project is co-funded by the European Union and the Republic of Turkey, under the Civil Society Dialogue scheme.

The project partners have set as the overall objective of the Independent Living Network Project (ILNET) the need to ensure that people with disabilities in Turkey are better informed and able to advocate for the right to independent living, by learning from the experience of the Independent Living movement in Europe and by using international and European human rights legislation and policies, and good practice. In order to achieve this objective, the following specific objectives have been formulated: (1) Establish an online platform for the ILNET to exchange information about projects, successful advocacy activities, fundraising possibilities between Turkey and other EU Member States; (2) Raise awareness of decision and policy makers and disability CSOs on issues related to social inclusion and independent living, as a priority at the European level; in this way, strengthen cooperation amongst the CSOs, as well as between CSOs and public institutions; (3) Draft the Roadmap for the implementation of Article 19 of the UN CRPD for Turkey and present it to the relevant authorities; (4) Facilitate continued cooperation with RUSIHAK and other CSOs in Turkey with the CIL Sofia and ENIL.

The project website http://ilnet.enil.eu will be launched in March 2015.

4. Cooperation with other organisations

4.1. Zero Project 2015The Zero Project, an initiative of the ESSL Foundation, focuses on the rights of disabled people globally. It provides a platform where the most innovative and effective solutions to problems that persons with disabilities face, are shared. It seeks to identify the most innovative and effective policies and practices that improve the lives of disabled people in order to contribute to positive development. In 2014 - 2015, the Zero Project focused on independent living and political participation.

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In 2014, ENIL partnered with the Zero Project in order to help gather good practice examples in services and policies on Independent Living, and identify indicators for collecting information on the right to live independependently. ENIL was also consulted on the Zero Project conference, scheduled to take place in Vienna in February 2015.

For more information, please see: http://www.zeroproject.org/

4.2. Side event on Independent Living at the United Nations in Geneva

Photo: UN Headquarter in Geneva

On 19 September, ENIL co-hosted a successful side event on Independent Living during the 12 th

Session of the Committee on the Rights of Persons with Disabilities. Held at the United Nations in Geneva, the event was co-organised with our Belgian members GRIP and Onafhankelijk Leven. Speakers included John Evans, Peter Lambregths, Nadia Hadad and Jamie Bolling, Jan Jarab from the UN OHCHR Regional office in Brussels, and Elisabeta Moldovan, a self-advocate from Ceva de Spus in Romania. Following the short presentations, a discussion took place with members of the CRPD Committee about the implementation of Article 19 of the UN CRPD in Europe.

4.3. European Expert Group on the Transition from Institutional to Community-based Care (EEG)ENIL-ECCL continued to actively participate in the work of the EEG during 2014, represented by Peter Lambregths and Ines Bulic. Supported by the European Commission and the national authorities, EEG organised a number of national seminars on the role of Structural Funds in supporting de-institutioanlisation in Poland, Bulgaria, Czech Republic, Slovakia, Slovenia, Lithuania and Serbia. In addition to the internal and join meetings with the European Commission, EEG held a high-level event in the European Parliament in December, focusing on the role of the European institutions in facilitating de-institutionalisation.

ENIL was represented by Ines Bulic at the seminars in Czech Republic, Slovakia and Serbia, and was also commissioned to work on the revised edition of the Toolkit on the Use of EU Funds for the Transition from Institutional to Community-based Care, which was published in June.

For more information, please see: http://deinstitutionalisationguide.eu/

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4.4. Fundamental Rights Platform of the EU Fundamental Rights AgencyAs members of the Fundamental Rights Platform (FRP) of the EU Fundamental Rights Agency (FRA), ENIL and ECCL participated in the 7th FRP meeting, held on 10 - 11 April in Vienna. During the meeting, Tove Brandvik from ENIL’s member ULOBA in Norway was successfully elected to the Advisory Panel of FRP for a two-year term, thus replacing our Executive Director Jamie Bolling who served two consecutive terms. During the meeting, ENIL also held a Floor is Yours session entitled “Is the EU putting its money where its mouth is? – Presentation of a report on the use of Structural Funds to perpetuate the segregation of disabled people”.

4.5. European Structural and Investment Funds structured dialogue group of expertsIn 2014, ENIL was elected to the European Structural and Investment Funds structured dialogue group of experts, where it is represented by Ines Bulic. The aim of the group is to support the work of the European Commission as regards the development of cohesion policy, to assist the Commission on questions relating to the implementation of support from the Structrual Funds, to monitor the evolution of policy in the field of partnership and multilevel governance and to bring about an exchange of experience and good practices in the field of partnership and multilevel governance. The first meeting took place in November (where ENIL was represented by Nadia Hadad) and the group will continue to meet at least twice per year in the coming years.

5. Participation in conferences and other events

Closing conference of the INNOSERV Project, 28 – 29 January, Paris, France (ENIL was represented by Jamie Bolling and Jean Pierre Ringler)

Equinet High Level Legal Seminar, 19 February, Brussels, Belgium (ENIL was represented by Jamie Bolling)

World NGO Day, 27 – 28 February, Helsinki, Finland – organised by the World NGO Day Initiative (ENIL was represented by Jamie Bolling)

Learnabil-IT Partners Meeting, Mutual Learning on skills for the ICT Labour Market for People with Disability, 7 May, Vilnius, Lithuania (ENIL was represented by Jamie Bolling)

Institute for Independent Living Seminar on Disability Discrimination in Europe – Opportunity and Difficulty in Claming Rights in Court, 23 May, Stockholm, Sweden (ENIL was represented by Jamie Bolling)

PERSON Conference on the right to legal capacity and community living of people with disabilities, 29 – 30 May, Sarajevo, Bosnia and Herzegovina – organised by SUMERO (ENIL was represented by Ines Bulic)

Colloque de Morat 2014 “Preventive, Educative, Curative … if Not? The End of Institutions”, 5 – 6 June, Lausanne, Switzerland – organised by Integras – Association professionnelle pour l’education sociale et la pedagogie specialisee (ENIL was represented by Jamie Bolling)

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22nd European Social Services Conference “Investing in People and Communities. Social inclusion and social development.”, 7 – 9 July 2014, Rome, Italy – organised by the European Social Network (ENIL was represented by Peter Lambreghts)

Japanese Study Visit on Independent Living, 28 August, Stockholm, Sweden – organised by STIL (ENIL was represented by Jamie Bolling)

Meeting “How can FRA and Civil Society step up cooperation to achieve more impact on fundamental rights?”, 1 – 2 October, Vienna, Austria – organised by EU Fundamental Rights Agency (ENIL was represented by Jamie Bolling and Tove Brandvik)

Expert seminar “Mapping of barriers to social inclusion for young people in vulnerable situations”, 30 September – 2 October, Strasbourg, France – organised by the European Commission and the Council of Europe (ENIL was represented by Mari Siilsalu)

Public hearing on the Civil Society Perspectives on the Implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), 2 October, Brussels, Belgium – organised by the European Economic and Social Committee (ENIL was represented by Peter Lambreghts)

“Home for All” Conference, 9 – 10 October, Oslo, Norway – organised by the European Association of Service Providers for Persons with Disabilities (EASPD) with the Nordic Centre for Welfare and Social Issues, the Norwegian SOR Foundation and the partners of PUSH Europe (ENIL was represented by Vibeke Maroy Melstrom, Tove Brandvik and Ines Bulic)

“Forgotten Europeans” event on the rights on persons with psychosocial disabilities, 16 – 17 October, Brussels, Belgium – organised by the UN OHCHR Regional Office for Europen (ENIL was represented by Nadia Hadad)

Meeting of the Disability High Level Group, 21 October, Brussels, Belgium – organised by the European Commission (ENIL was represented by Ines Bulic)

European Work Forum on the Implementation of UN CRPD, 22 – 23 October, Brussels, Belgium – organised by the European Commission (ENIL was represented by Jamie Bolling, Peter Lambreghts and Ines Bulic)

LAF (Local Administration Facility) Seminar on the role of municipalities in supporting people with disabilities, 29 – 31 October, Brussels, Belgium – organised by the European Commission (ENIL was represented by Peter Lambreghts)

Conference “A sustainable care system for Europe in the context of reconciling work and family life”, 4 November, Rome, Italy – organised by COFACE and Anziani Ma Non Solo (ENIL was represented by John Evans)

Regional conference “Independent Living of persons with disabilities in the Balkan region and Bosnia and Hercegovina – Opportunities and Challenges”, 5 – 6 November, Sarajevo, Bosnia and Herzegovina - organised by IC Lotos from Tuzla, Bosnia and STIL – Swedish Co-

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operative on Independent Living (ENIL was represented by Jamie Bolling and Kapka Panayotova)

EU FRA expert meeting on typology of institutionalisation “The right of persons with disabilities to live independently and be included in the community”, 19 November, Vienna, Austria (ENIL was represented by Jamie Bolling and Kapka Panayotova)

A conference on Independent Living to mark the International Day of People with Disabilities, 3 December, San Marino – organised by Attiva-Mente (ENIL was represented by Jamie Bolling, Dilyana Deneva and Germano Tosi)

European Day of Persons with Disabilities Conference, 2 – 3 December, Brussels, Belgium – organised by the European Commission and European Disability Forum (ENIL was represented by Peter Lambreghts, John Evans and Zara Todd)

6. Thank you

ENIL would like to thank all the interns and volunteers who have helped with different activities in 2014. They are: Esti Alvarez, Xabier Ansorena, Gatis Caunitis, Agnes Sarolta Fazekas, Orla Kelly, Mari Siilsalu and Zara Todd. We also thank Vanessa Scanlon from our Dublin Secretariat for her committment and contribution to ENIL and wish her all the best in the future.

7. ENIL Summary Activity 2013ENIL continued to go further in the process of strengthening its organisational capacity since moving the Secretariat from Valencia, Spain to Dublin, Ireland in 2012. The Executive Director of ENIL was appointed as North Regional Coordinator and this office is now based in Harnosand, Sweden. A new South Regional Coordinator, Dilyana Deneva was appointed and remains based in CIL Sofia, Bulgaria. Two new East Regional Coordinators were appointed, Miro Griffins who was based in the United Kingdom and Grega Fajdiga who was based in YHD, Slovenia. The contract of the West Regional Coordinator based in Onafhankelijk Leven, in Belgium was extended. One of the main objectives of the regional teams for 2013 was to continue to establish new contacts and allies and to expand ENIL’s membership across Europe. One of the challenges is encouraging organisations to take an active role within ENIL and finding ways to support them (through sharing of information, facilitating networking events, joint lobbying activities etc.)

A regional face-to-face meeting was organised in each of the four regions and focussed on important issues pertaining to the region for example the impact of the austerity measures being the focus of the meeting of the West Regional Face-to-face ‘Stop making disabled people pay for the crisis’ meeting. The meetings also focussed on personal assistance services and the current progress being made towards Independent Living in the Region. One of the key aims of each of the meetings was to discuss how the regions could be strengthened and cooperation increased within the region. The South Regional Face-to-face meeting took place during the Strasbourg Freedom Drive in France, the North Regional meeting took place in Elva, Estonia, the West Regional meeting

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in the European Parliament in Brussels and the East Regional Meeting took place in Banja Luka, Bosnia.

ENIL’s expertise on independent living and personal assistance was sought by various organisations and businesses. ENIL hosted a number of study visits throughout the year including: 1) a study visit to Minsk, Belarus between CIL Sofia and the Office for the Rights of Persons with Disabilities ( ORPD); 2) a study visit to Stockholm, Sweden between ‘Ray of Light’ Estonia and ENIL & STIL; 3) Study visit of DREAM Researcher focusing her research on deinstitutionalisation to the ENIL London office; 4) Study visit of the Executive Director of ENIL to the Center for Disabled Peoples Organisations in Copenhagen and 5) Former Captain Regent of San Marino to CIL Sofia, Bulgaria. ENIL also hosted young people on internships including two young people from Latvia and Estonia respectively to the Executive Director’s Office in Harnosand, Sweden and one person from the Global Grants Programme from Spain who is stationed at the Executives Directors office in Harnosand, Sweden. ENIL also held training on Independent Living and personal assistance for residents of an institution for young persons with disabilities in Sofia, Bulgaria.

ENIL Representatives also supported and participated in a number of events in each of the four regions. In the South Region ENIL Board member Paul Fagan spoke about the current situation of personal assistance services in Europe at a Conference on Personal Assistance and Independent Living in Barcelona, Spain. Jamie Bolling, Executive Director of ENIL participated in a Scandinavian Seminar on Hate Crimes against people with disabilities in Oslo, Norway in the North Regional. In the West Region, Peter Lambreghts, ENIL’s West Regional Coordinator and ENIL member spoke at a Seminar on self-directed support systems in Europe, Brussels, Belgium. ENIL in cooperation with th Motivacio Foundation held a Roundtable on Independent Living in the East Region in Budapest, Hungary with the Executive Director of ENIL, Jamie Bolling participating in this roundtable.

Internally, ENIL has continued improving its monitoring and reporting system. Emphasis has continued to be placed on the crucial importance of communication as staff members are dispersed across Europe. Online staff meetings are held every two weeks and give everyone an opportunity to speak about activities they have carried out and any difficulties encountered. Meetings are also used to plan future activities, to agree to deadlines and to discuss any recent developments where ENIL should take action. The meeting minutes, as well as monthly reports ( filed by all staff) are stored by the Secretariat. They are also stored in SugarSync which can be accessed online and actively syncs files across computers and other devices for file back up and access. A system of staff appraisals has been put in place. Each staff member and ENIL Coordinator completes a self-assessment (in 2013 a new template for staff appraisals was introduced) and each staff member met with the Executive Director and Co-Executive Director of ENIL to discuss their individual performance and as a team member. This gives valuable feedback to both the management team and staff and identifies areas where further training could be provided.

In 2013, ENIL successfully made an application to the Council of Europe for a follow up study session focusing on young disabled and multiple discrimination to the 2012 ‘Supporting Young disabled people to become Future Leaders of the Independent Living Movement’ Study Session. The ENIL Youth Network has continued to grow and in September 2013 during the Strasbourg Freedom Drive an ENIL Youth Meeting was held at the European Youth Centre in Strasbourg. ENIL

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also produced a video of the first ever official ENIL Youth Network Meeting which took place during the Strasbourg Freedom Drive on the 12th September 2013 at the Council of Europe Youth Centre. Young disabled people from all across Europe, many of whom are members of the ENIL Youth Network participated in this meeting and this video highlights their views on the current situation for young disabled people in Europe and how we can all improve the situation for all young disabled people in Europe by working together and finding new solutions.

An ENIL External evaluation began on the 1st December 2013 and is due to be completed in March 2014 with a final report available then. The recommendations from the 2011 internal evaluation which aim to improve Regional Team planning, reporting and follow up continued to be implemented in 2013.

The General Assembly took place in September in Strasbourg with very good participation. In preparations for the General Assembly, the Board reviewed the ENIL Constitution at the face-to –face meeting in Norway and proposed some changes. The amended constitution was accepted by the membership and is published on the ENIL website.

In terms of staff training, all members of staff received training on the independent living definitions at the face-to-face meeting in Sofia, Bulgaria in February 2013. Kapka Panayotova, ENIL Board member outlined the ENIL definitions and their importance in progressing the independent living movement, the challenges and threats to these definitions as well as how best to combat these threats was also discussed. In June 2013, at the ENIL face-to-face Board meeting in Drammen, Norway, the ENIL Board took part in training with a focus on the sustainable development. A training pack for new staff and interns of ENIL containing information about the current projects ENIL are involved in, key staff members and practical information was developed in 2013.

Strasbourg Freedom Drive 2013 was ENIL’s main lobbying and networking event during the year which gathered 200 people from all over Europe. The countries represented by organisations or individuals were: Austria, Belarus, Belgium, Bulgaria, Bosnia and Herzegovina, Croatia, Estonia, France, Germany, Greece, Ireland, Italy, Latvia, Norway, Romania, Serbia, Slovenia, Spain, Sweden and the United Kingdom. Unfortunately, public cuts which have affected disabled people across Europe did have an effect on people’s ability to make the journey into Strasbourg. Another difficulty, which is unfortunately out of ENIL’s hands, is the availability of accessible accommodation in Strasbourg. As in previous years, participants have to book well in advance and be willing to stay in the surrounding area of Strasbourg.

The meeting of Freedom Drivers with MEPs in the European Parliament was organised on 11th

September 2013. Emer Costello, MEP for Ireland opened the meeting by outlining the importance of the UN CRPD, the ratification of which she is promoting in Ireland. Mairead McGuinness another MEP for Ireland stressed the importance of working to ensure that Structural Funds do not go into the building or maintaining of institutions for disabled people. Unfortunately, not many of the members of the Disability Intergroup were in attendance. One of the Vice-Presidents of the European Parliament, Edward McMillian-Scott (UK) also joined the meeting and invited some of the Freedom Drivers to attend the meeting of the Plenary Session. He supported ENIL’s call for a Commissioner on Disability and invited everyone to engage with the issue. Some of the delegations

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including Spain, Slovenia, Belgium, Estonia, Sweden, the UK, Bulgaria, Belgium, Ireland, Germany and Italy also had national meetings with their MEPs. ENIL used the meetings to gain the signatures of Members of the European Parliament for an oral question on the effect of cuts in public spending on persons with disabilities in the European Union. This proved to be a very successful strategy and nearly forty of the required signatures were collected. After the Freedom Drive, some of the delegations have arranged follow-up meetings with their MEPs. So far ENIL has also managed to attract good support from other European networks and organisations for the Proposal for a Resolution of the European Parliament on the effect of the cuts in public spending on persons with disabilities in the European Union.

The Freedom Drive Video Campaign was launched in the European Parliament at the meeting with the Freedom Drivers and MEPs. The Freedom Drive Campaign introduces disabled people who could not attend the 2013 Freedom Drive. This video demonstrated to the Members of the European Parliament the many ways disabled people are still being discriminated and excluded from the society. The Campaign aimed to show that the human rights of disabled people are still being violated, despite the European Union’s and the Member States’ ratification of the UN Convention on the Rights of Persons with Disabilities. Through this campaign ENIL called on the European countries and the European Union for the full ratification and implementation of the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol. 2013 marked the 10th Anniversary of the Freedom Drive and to commemorate this occasion a Freedom Drive Booklet ‘Ten Years Closer to Freedom? Celebrating the 10th Anniversary of the Strasbourg Freedom Drive’ was published.

The impact of the financial crisis in Europe continued to be evident in 2013. As a direct result of the cuts in public spending across Europe, many people with disabilities have lost their entitlements to personal assistance and other types of support. In many countries disabled people’s organisations reacted by organising national protests and other actions. Members of ENIL in Norway organised activities to celebrate Independent Living and to raise awareness among policy and decision makers and in the Netherlands the first ever disability Pride Parade was held. Disabled People against Cuts held a Vigil in the United Kingdom with the aim of saving the Independent Living Fund and the Right to Independent Living.

The working group ‘Defend the Right of Independent Living’ continued its work towards the Proposal for a Resolution of the European Parliament on the effect of the cuts in public spending on persons with disabilities in the European Union being adopted by the European Parliament in 2013. ENIL has continued to lead this group and there has been good cooperation between ENIL and a number of other organisations in this working group, namely Autism Europe, Inclusion Europe, Mental Health Europe, Disabled People Against Cuts (UK), European Association of Service Providers for Persons with Disabilities (EASPD) and European Network of (ex) Users and Survivors of Psychiatry (ENUSP). The working group has continued to work in close cooperation with Paul Murphy, MEP and has continued to seek support from the Employment and Social Affairs Committee. On the 7th March 2013, the Conference of Presidents agreed to place an oral question on the impact of austerity on the living conditions of people with disabilities on the agenda of the European Parliament. The question, debated and adopted by the Employment and Social Affairs

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Committee in February 2013 was based on a proposal by ENIL and cooperating European organisations. The debate on this oral question took place in the plenary meeting on the 12 th March 2013 in the European Parliament.

ENIL has continued to search for allies among EU politicians to support ENIL’s demands towards the EU and National Governments. Good cooperation has continued with Swedish MEP Cecilia Wikstrom and there has also been continued co-operation with Paul Murphy, MEP Ireland. New cooperation was established between Jean Lambert, Mep and ENIL. Representatives of ENIL participated in several EU events, where they were able to promote independent living and the rights to personal assistance. The Executive Director of ENIL, Jamie Bolling participated in both the EU FRA 6th Fundamental Rights Platform meeting in Vienna, Austria and the EU-FRA Combating hate crime in the EU-giving victims a face and a voice Conference, Vilnius, Lithuania. ENIL Board member and West Regional Coordinator, Peter Lambreghts participated in the Workforum on the implementation of the UN CRPD in Brussels, Belgium.

ENIL’s internet presence has increased significantly during the year. An important priority for ENIL was to encourage its members to communicate more actively, to share experiences and work together. In addition a new section of the ENIL website has been added- the Hall of Fame, which presents and honours pioneers of the Independent Living Movement. In addition to daily developments and action alerts (Disability Watchdog) , the website introduces Role Models ( i.e. independent living activists from across Europe who inspire others with their energy, commitment and ideas). Under campaigns, visitors can find more information about the Strasbourg Freedom Drive. Readers are also invited to visit the blog section and to post comments. The website has continued to become a valuable source of information for organisations and individuals working in the field of disability, with more than 1,117 unique visits per month. Press Releases have also been issued regularly on important occasions or as a reaction to developments (Effect of the crisis on people with disabilities to be debated in the European Parliament on the 12th March 2013 and ENIL Marks the World Mental Health Day by Submitting a Response to World Health Organisation – WHO Action Plan 2014-2020 “Better Health for People with Disabilities”) and have been distributed widely and published on the website.

In terms of spreading ENIL’s message to the wider audience, the Newsletter has again proved to be an excellent tool. The newsletter template was updated in February 2013 making it even more interactive and user friendly. Regional Teams and the Secretariat share the responsibility of contributing to each issue and there has been no shortage of articles. Each issue features examples of good practice, Disability Watchdog (examples of bad practice and human rights violations), a role model and any other relevant news and events. In preparation for the Strasbourg Freedom Drive, two special ‘Strasbourg Freedom Drive’ editions of the newsletter were distributed in July and September 2013 respectively.

ENIL organised trainings on Independent Living and on topics that affect the lives of people with disabilities throughout Europe. ENIL held online training for members of the South Region which included modules on Independent Living, Social Inclusion and Principles of Personal Assistance.

ENIL has continued to support the development of peer counselling in Estonia. Mari Siilsalu, ENIL

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Estonian Coordinator won the Youth of the Year award during the Tartu City Youth Worker Recognition Event in 2013 in Estonia. Mari was awarded this achievement for recognition of her working in creating a safer environment at in schools and for developing peer counselling in schools. ENIL also produced a Research Paper on Access to Disabled People to Peer Counselling in selected Countries.

ENIL has also continued its work in relation to personal assistance in Europe. The results of the personal assistance questionnaire on the provision of personal assistance in a number of European countries were published on the ENIL website. In 2013, additional information about Belarus, Greece, San Marino, Holland, Bulgaria, Cyprus, Ireland, Spain, Germany and the United Kingdom was collected. A paper on the Comparative Analysis of Personal Assistance Provision in Europe was also published by ENIL in 2013.

ENIL’s project the European Coalition for Community Living published a new briefing in December 2013 on the use of Structural Funds for disabled people. The briefing entitled Achieving the Transition to Community Living, highlights the fact that at least €150 million were invested into institutions for disabled people in six EU Member States (Bulgaria, Hungary, Latvia, Lithuania, Romania and the Slovak Republic). As part of advocacy for better use of Structural Funds in Central and Eastern Europe, ENIL and the Open Society Foundations- Mental Health Initiative held a successful roundtable with representatives of the European Commission, Member States, the European Parliament and the civil society. The meeting organised on 7th November 2013 in Brussels, had as its main objective to provide input into the Draft Briefing on Structural Funds Investments for People with Disabilities: Achieving the Transition from Institutional Care to Community Living.

In relation to the work on the UN CRPD, ENIL will now conduct a Shadow Report with Open Society Foundation. ENIL have learned that due to a backlog faced by the UN CRPD Committee, it now has more time to develop Independent Living indicators on the UN CRPD. ENIL will now focus on drafting a shadow report on Article 19 of the UN CRPD and its implementation across Europe. In cooperation with STIL and the Swedish delegation to the UN, ENIL organised a side-event on progress in realising the right to Independent Living in Europe at the UN High Level Meeting on Disability and Development in September 2013. The side event looked at the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities ( Living Independently and being included in the community) in Europe and globally.

Most activities during this period have focused on cooperation with other stakeholders- universities, policy makers and businesses. ENIL is an Associated Partner in the DREAM project- Disability Rights Expanding Accessibility Markets, which is led by the Centre for Law and Policy at NUI Galway. ENIL is also a member of the INNOSERV Consortium. The goal of the project is to identify innovative services to develop innovative research agenda, which will help define future activities. ENIL hired a full time researcher based in Belgrade, Serbia to work on this project. ENIL supported the webinar on innovative social service examples which took place in April 2013. Two Expert meetings in Brussels and Sofia were organised by ENIL as part of the INNOSERV Project, 18 th

September 2013 and the 7th October 2013 respectively.

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As a result of the success of the hate crime training in Dublin, Ireland in May 2012, a workshop on hate crime was held at the Strasbourg Freedom Drive. This workshop was led by Joanna Perry, Hate Crime Officer, OSCE-Office for Democratic Institutions and Human Rights. A number of topics were discussed throughout the workshop including, what is disability hate crime, what are the links to tackling hate crime and how can we raise awareness of disability hate crime. ENIL’s Hate Crime Network on Facebook has continued to grow in 2013. Its aim is to help collect information about incidents of hate crime against people with disabilities and to share good practice in organising training and awareness raising activities among disabled people’s organisations. In this way, ENIL hopes to contribute to increased recognition and better reporting of hate crime against people with disabilities in Europe and ultimately to improved prevention and better justice for victims of hate crimes.

Three additional workshops took place during the Strasbourg Freedom Drive; Discrimination and the processing of disability related cases” which was led by Berit Vegheim, Uloba and Prof. Lisa Waddington, Maastricht University, “Hijacked definitions and disability policy” which was led by Kapka Payaytova, Director of CIL Sofia and ENIL Board member and “Using EU Structural Funds to support Independent Living” which was led by ENIL’s Policy Officer Ines Bulic. All workshops encouraged engaging discussions on the topic and there was good participation from those in attendance.

In addition to the EU Fundamental Rights Agency and the European Expert Group on the Transition from Institutional to Community- based care. ENIL has continued being active in the European Disability Forum and is supporting EDF initiative such as EDF Living independently and being included in the community for all persons with disabilities ‘EDF’s understanding of article 19 UN Convention on the Rights of Persons with Disabilities’ Consultation which ENIL Board members and members contributed to. The Co-Executive Director of ENIL, Martin Naughton spoke about Independent Living Definitions at the EDF Board meeting in Dublin, Ireland in February 2013 and ENIL Board member and West Regional Coordinator Peter Lambreghts spoke in relation to Independent Living and Article 19 at the EDF Board meeting in Vilnius, Lithuania, November 2013.

ENIL member organisations have provided input into changes in legislation in relation to personal assistance. ENIL supported Germany in the collection of signatures for changes to be made in the law in relation to personal assistance. In Norway, members successfully campaigned against the introduction of new legislation and Uloba drafted a new proposed legislation which will be debated in the Norwegian Parliament in 2014. After national elections in May 2013, representatives of CIL Sofia held a meeting with the Minister of Labour and Social Policy presenting and outlined a draft Personal Assistance Law which includes amendments that could be made to the current Law on Integration of Disabled People which would bring Bulgaria closer in line with the UN CRPD and in 2013, the new Government of Slovenia decided to not go ahead with the Law on Personal Assistance. A new Long- Term Care Act was proposed by the Government. YHD are now working towards requesting that the legislation relating to personal assistance be a separate chapter within the act.

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