ENIL Annual Report 2011/2012
About ENIL
The European Network on Independent Living (ENIL) is a Europe-wide network of people with disabilities with members throughout Europe. ENIL is a forum for all people and organisations on Independent Living issues. ENIL promotes human rights and social inclusion based on solidarity, peer support, deinstitutionalization, democracy, self-representation, cross disability and self-determination.
ENIL promotes equal opportunities for people with disabilities and fights against discrimination in Europe. ENIL addresses the under- representation of persons with extensive disabilities in European disability and social politics, as well as in mainstream society.
ENIL’s mission:
Promote the Independent Living philosophy among people with disabilities, general public, national policy makers, government administrations, as well as among regional bodies such as the European Union, the Council of Europe and the Organisation for Security and Co-operation in Europe (OSCE)
Develop the concept, principles and definition of Independent Living. Promote the development of Centres of Independent Living throughout Europe and enhance solidarity and networking among them
Carry out training and awareness raising activities at the European level
Represent Independent Living Organizations and the Independent Living movement at the European level and in different European bodies and organizations (the European Disability Forum, Disabled People’s International etc.)
Combat social exclusion and discrimination through policies which promote Independent Living of people with disabilities. Make the Independent Living framework instrumental to end discrimination against people with disabilities in Europe
Embrace the social model of disability in acquiring independence and self-determination by overcoming the barriers of the medical and attitudinal models.
The difference: That which makes ENIL different from other disability-related European organizations is its make-up of strong grass roots guided by the social model approach; the dedication of us as members to promote, advocate and lobby for social change (empowerment of disabled people to take control over their lives); and the transferability of the Independent Living principles into applicable practices. ENIL represents a disability movement for human rights and social inclusion based on solidarity, peer support, de-institutionalization, democracy, self-representation, cross disability and self-determination
Board and Staff-Organisational Chart
At Present, there are ten members of the ENIL Board; Mima Ruzicic Novkovic (Serbia) , Javier Arroya ( Spain), Kapka Panayotova ( Bulgaria) , Peter Lambreghts ( Belgium) , Germano Tosi ( Italy) , Sue Bott ( England) , Vibeke Maroy Melstrom( Norway), Wasilios Katsioulis ( Greece/Germany), Gordon Ryan ( Ireland) and Paul Fagan ( Ireland) .
ENIL’s management Team consists of the Excutive Director Jamie Bolling, Co-Executive Director Martin Naughton and Policy Officer and Regional Manager Ines Bulic.
The ENIL Secretariat is based in Dublin, Ireland. The Communications Officer Vanessa Scanlon and the Finance Officer Mladen Tubic are located in the Secretariat.
ENIL has four Regional Team,. ENIL’s North Regional Team is located in the Executive Directors Officer in Sweden and is Coordinated by Jamie Bolling, the Executive Director. ENIL’s West Regional Team is based in Onafhankelijk Leven and is Coordinated by Peter Lambreghts, ENIL’s South Region is based in CIL Sofia, Bulgaria with Dilyana Deneva coordinaating this region. ENIL’s East Region has two Regional Coordinators with Miro Griffiths based inthe Britain and Grega Fadija based in YHD in Slovenia.
ENIL main Activities, are grouped under four main objectives based on the Progress Work Plan of the European Commission.
Objective One: Improving Organisational Capacity and Management
In 2011, ENIL focussed on strengthening its organisational capacity by partnering with Onafhankelijk Leven in Belgium which took the role as a base for ENIL’s West Regional Team. In 2011, the other three teams, covering the East, North and South Europe were based in Slovenia, Sweden and Valencia respectively. In 2012, ENIL continued to strengthen the Regional Teams, with the South Regional Team being moved to be based in CIL, Sofia, Bulgaria with a new South Regional Team Coordinator being appointed.
ENIL went further in the process of strengthening its organisational capacity by moving the Secretariat to Valencia, Spain to Dublin, Ireland in July 2012. This is gives greater consistency and control to the Secretariat in terms of language and culture and the ENIL Company has been registered in Ireland for a number of years and Financial Audits are carried out in Ireland. ENIL still maintain close links with the office in Valencia and provide support to the development of a Centre of Independent Living there.
ENIL has continued to develop the capacity of the regional teams and in 2012, held a West Regional Face-to-Face meeting in Antwerp, Belgium on the 22nd and 23rd October 2012, with a focus on Independent Living in Europe and the impact of the EU crisis on people with disabilities in Europe and a learning session on Quality of Life, an academic concept as a tool for Independent Living Activism.
ENIL’s expertise on Independent Living and Personal Assistance was continuously sought in 2011/2012.
ENIL hosted a number of study visits throughout 2011 and 2012, including a study visit from CIL Greece to CIL Sofia in Bulgaria and a DREAM Researcher based at the University of Iceland to JAG in Sweden
In 2011, ENIL held a number of Start Up Conferences including one in Rome, 5th May where delegates from Italy discussed starting a National Centre for Independent Living and a national Freedom Drive march and one in Serbia on the 21-23rd December 2013. Start Up conferences were also held in 2012, in Drama, Greece, Bar Montenegro and Budapest, Hungary.
ENIL also held training on Independent Living and Personal Assistance for residents of the Stara Zagora institution in Sofia, Bulgaria. In edition, ENIL provided Peer Support Tartu, Estonia in September 2012. ENIL supported a number of events organised throughout Europe by member organisation including JAG’s Future Conferences where the Executive Director of ENIL, Jamie Bolling spoke about future challenges to the Independent Living Movement in Malmo in November 2012.
ENIL Study Session
ENIL and the Youth Department of the Council of Europe organised a week long study, “Supporting Young Disabled People to Become Future Leaders of the Independent Living Movement” which successfully brought together young people with disabilities from all across Europe. Led by a team of young facilitators, all of whom are experienced Independent Living advocates, the participants discussed and learnt about a range of topics including the UN Convention on the Rights of Persons with Disabilities, working with the media and personal assistance. A key outcome of the Study Session was a set of recommendations to national governments adopted by the participants and presented to a group of MEPs and the Council of Europe. These recommendations aim to improve the lives of people with disabilities and are focussed on four areas: changing perceptions and attitudes towards young people with disabilities by the society, Education, Transition to Employment and Institutions and Independent Living.
ENIL Youth Network
The majority of participants expressed an interest in continuing their involvement in ENIL and in contributing to the work of a Youth Network which would focus on promoting Independent Living and Personal Assistance. After the session, a Facebook page ENIL Youth Network was set up for participants to stay in touch, share information and ideas.
Objective Two: Voicing the Conditions, Concerns and Expectations of (1) People Exposed to Social Exclusion, Discrimination and Gender Inequality or (2) Organisations Providing Services to People exposed to Social Exclusion, Discrimination and Gender Inequality
The Strasbourg Freedom Drive was one of the main ENIL events in 2011. This was a weeklong event which gathered 350 people from all over Europe. The aim of the events is to promote Independent Living philosophy, to encourage networking and to empower ENIL members to become more pro-active. The week long event included a conference on the UN CRPD during which several international speakers addressed issues including; the work of the European Fundamental Rights Agency, the importance of disability research for the UN CRPD and the importance of monitoring the work of the convention. National Groups held meetings with their MEPs and approximately 85 MEPs were met throughout the week. A march took place on Wednesday 14th September 2011 in which 350 people joined together through the streets of Strasbourg to deliver ENIL’s demands to MEPs at the European Parliament. On the 15th September 2011, over 200 ENIL members met with MEPs from the Disability Intergroup at the European Parliament and other MEPs. Among the participants in the meeting was the Vice-President of the group; Cecilia Wikstrom and Adam Kosa who chaired the meeting.
Resolution Against the Cuts
On the occasion of the 2011 Freedom Drive, ENIL launched a Proposal for Resolution of the European Parliament on the effects of cuts in public spending on persons with disabilities in the European Union. The Resolution outlines measures that should be taken by the Member States, the European Council and the European Commission to ensure that cuts in public spending do not lead to further social exclusion and institutionalisation of people with disabilities. ENIL urges that doing so is everyone’s responsibility under the UN Convention on the Rights of Persons with Disabilities.The Proposal was presented to Members of the European Parliament at the Disability Intergroup meeting on the 15th September 2011.
On the 9th February 2012, ENIL held a hearing in the European Parliament. The hearing was hosted by the parliamentary group GUI/NGL (European United Left/Nordic Green Left). The purpose of this hearing was to show from a number of perspectives how people with disabilities are being negatively affected by the EU’s current austerity policies. ENIL and its partner organisations presented evidence about the impact austerity measures are having on the lives of people with disabilities in the European Union and set out actions that can be taken by the European Parliament and the European Commission to address the situation. ENIL presented its ‘Proposal for a European Parliament Resolution’ on the effects of the cuts on people with disabilities. The hearing was received positively in the European Parliament and three members of the European Parliament actively participated in the hearing, Kartika Liotard, MEP, Netherlands, Cecilia Wikstrom, MEP, Sweden and Paul Murphy, MEP, Ireland.
As a direct follow on from this hearing, an ad hoc working group, entitled ‘Defend the Right of Independent Living’ as set up with ENIL taking the lead role to further the work towards the Proposal for a Resolution being adopted by the European Parliament. 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 also works in close cooperation with Paul Murphy, MEP and has also sought support from the Employment and Social Affairs Committee to initiate debate and vote on the Resolution in the European Parliament. In order to help the Resolution to be adopted by the European Parliament we created a ‘Defend the Right to Independent Living: Action Toolkit for an EU Parliament Resolution’. This Action Toolkit outlined the background to this resolution, explains the process of a resolution being adopted in the European Parliament and provides useful ideas and methods to raise awareness of the issue and to effectively convince MEPs to vote Yes to our resolution proposal.
ENIL Representation at EU Level
Representatives of ENIL participated in several EU Level events, where they were able to promote independent living and the right to personal assistance. Three ENIL representatives participated and spoke in the 3rd European Parliament of Persons with Disabilities in December 2012. The Executive Director of ENIL spoke about the importance of the Independent Living Definitions, the Western Regional Coordinator of ENIL spoke about the impact of the crisis on the lives of people with disabilities and called on everyone to support the ENIL Proposal for a Resolution and a John Evans, of the ENIL Advisory Panel spoke deinstitutionalisation and the responsibility of the European Parliament and the EU institutions in implementing the UN CRPD.
In September 2012, ENIL organised a high level meeting with Cyprus Presidency with discussion focusing on the promotion of deinstitutionalisation and the issue of accessibility in Cyprus.
ENIL was very active at the European Level, particularly when it comes to providing input into the work of the EU Fundamental Rights Agency ( FRA) with ENIL’s Executive Director being elected in 2011 and then again in 2012 to the FRA Advisory Board. In 2011 ENIL also contributed to a symposium on human rights indicators and FRA’s Fundamental Rights Platform. The Executive Director of ENIL also had the honour of being invited to speak at the first European Mind Change Conference in Villach in May 2012.
ENIL Communications
ENIL’s internet presence has increased significantly over the last two years. An important priority for ENIL was to encourage its members to communicate more actively, to share experiences and work together. The ENIL website was redeveloped to ensure improved access to information about ENIL’s work and to provide up-to-date information about developments on independent living of people with disabilities at EU and national level. On the 28th August 2012, ENIL launched its new website and in addition to daily developments and action alerts (Disability Watchdog), the website introduces Role Models, independent living activists from across Europe who inspire others with their energy, commitment and ideas.
Press Releases were issued regularly in 2011 and 2012 on important occasions or as a reaction to developments (UK Government orders immediate Enquiry Following the Abuse , Haressment and Violence against people with Challenging behaviour in Bristol and ENIL calls for the Structural Funds to support Independent Living) and have been distributed widely and published on the website.
The ENIL Newsletter has proved to be an excellent tool throughout 2011 and 2012 in terms of spreading ENIL’s message to a wider audience. A new newsletter template was introduced in September 2012 making it more interactive and user reader friendly. Each issue is contributed to by the Regional Teams and features examples of good practice, Disability watchdog, a role model and other relevant news and events.
ENIL have also set up a Facebook page which was created in May 2012, this page is aimed at Independent Living Activists, ENIL Members and the General Public. ENIL also set up a hate crime network group on Facebook for those who attended the workshop on hate crime against people with disabilities to encourage the continuation of people sharing experiences and sharing information. To Include Numbers of NL, PRs etc
Objective Three: Reinforcing the skills of the networks and member’s organisations to advance, support and further the develop EU objectives and priorities at National Level
ENIL organised trainings and workshops on Independent Living and on topics that affect the lives of people with disabilities throughout Europe in 2011 and 2012.
In 2011, four national independent living conferences were organised, in Belgium, France, Italy and Spain. All conferences focused on presenting the work of ENIL in Europe, the Freedom Drive 2011, the implementation of the UN CRPD and the state of Personal Assistance in the respective country.
In cooperation with the Office for Democratic Institutions and Human Rights (ODIHR) at OSCE, ENIL organised a workshop on hate crime against people with disabilities in May 2012 in Dublin, Ireland. The aim of the workshop was to increase ENIL’s capacity to work on hate crime and to strengthen cooperation between ENIL and the ODIHR. It brought together 20 disability activists and their Personal Assistants from 15 different countries. As a result of the workshop ENIL and OIDHR agreed to work towards including disability as one of the explicitly mentioned projected characteristics for hare crime in the OSCE region. ENIL also formed Hate Crime Network on Facebook among workshop participants.
ENIL also held training for Peer Counselling in cooperation with Handikapp from Tartu, Estonia from September 27th-30th 2012. The training attended by 30 participants. Peer Support Training was conducted in the Stara Zagora institution in 2012, with examples by people who they themselves had left Stara Zagora institution being shared. The story of Jose from Spain who he himself had left an institution after twenty years was also shared.
In September 2012, ENIL held a Roundtable on “Deinstitutionalisation: Residential Policy and Community Services” in Stara Zagora, Bulgaria. The Roundtable focussed on deinstitutionalisation, housing, access and community services. Peer support training for 30 residents in Stara Zagora institution.
Throughout 2011 and 2012 ENIL was actively involved in the European Expert Group on the Transition from Institutional to Community Based Care (EEG). In 2012, the group finalised the Common European Guidelines on the Transition from Institutional to Community based care and the Toolkit on Using European Union Funding. ENIL supported and helped to launch of the Guidelines and the Toolkit, which took place in Brussels on the 20th November 2012.
Objective 4: Better Integrating Cross-Cutting issues (EG. Gender,Poverty and Non-Discrimination) in Day-to -Day Work
In 2011 and 2012, ENIL cooperated with a number of stakeholders.
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 hosted one of the DREAM Reseachers based in the University of Iceland who is focussing her research on the Right to Independent Living and the development of user-led personal assistance based at JAG in Sweden May 2012.