Nothing about us without us
Carlotta Besozzi
Our history
HELIOS II (1993-1996)- European Community Action Programme for
people with disabilities creates EDF
1996 – EDF established as an independent organisation by national
councils and European NGOs &
2000-2003: non discrimination legislation & European Year of persons with
disabilities with first action plan
2004 – 2007 enlargement with 10-12 new national councils
2007 - review of constitution:
Review of EDF governing structures
national members from all over Europe
2002-2007 negotiation & adoption of the UN CRPD & COE action plan
2008 1million4disability campaign
2008- today Membership of IDA & international work
2011-2013: EU concludes the UN CRPD & EU framework established
Who are we?
A society that includes pwd is a
better society for everyone
• human rights
• equal opportunities
• non-discrimination
• guarantee fundamental rights
• promote active participation for
persons with disabilities
Values on which our work is based
• Self-advocacy: we are an organisation of persons with disabilities
and their families
• Involvement: nothing about us without us
• Independence: we make sure that our organisation remains
independent, and that our members decide upon the EDF work and
• Visibility: we demand that the rights persons with disabilities are
visible in all sectors of life.
• Inclusion: we fight for the inclusion of persons with disabilities in all
aspects of the society.
• Solidarity: we work to build a stronger and more united disability
• Partnership: we build alliances with other organisations which share
our goals and help us to promote the rights of persons with
A strong network
• Supporting a two-way communication flow in order to
develop effective campaigns at EU and national level;
• Shaping work and campaigns at EU level through their ideas
and experiences, and translating contributions into concrete
proposals to the EU decision-makers;
• Supporting exchange of experiences and practices;
• Providing trainings on specific areas fostering cooperation
among them;
• Providing regular information tools on the latest EU
developments on disability issues (members’ mailing,
publications, members’ only website etc) as well as
communication tools, which can be used by EDF members in
their own work;
• Developing capacity building projects to empower and
structure disability organisations where needed.
Our members
 Our members
More than 100 organisations
• Full members :
• national councils from EEA & European NGOs
• Composed & run by a majority of persons with disabilities
• Ordinary members:
– European NGOs for persons with disabilities
• Observer members
– National councils from the rest of Europe
• Associate members:
– European, national, regional organisations
Our members
 Our structure
• Full members & Ordinary members
– FORM Annual General Assembly
– ELECT every 4 years: President, Board & procedural
• The Board elects the Executive Committee & appoints
and supervises advisory bodies
• Observer members attend AGA + Board & Associate
members attend AGA
• All governing bodies are chaired by the President
• The Secretariat implements the work
What does EDF President do?
• chairs the meetings of the General Assembly, the Board of
Directors and the Executive Committee.
• Organises, on behalf of the Executive Committee, the
representation of the Association at external meetings and
• Supervises, on behalf of the Executive Committee, the
activities of the Secretariat
• Takes decisions on matters of urgency
What does EDF EXEC do?
• Is responsible for the daily management of EDF
• Decides on the representation of the Association at
external meetings and events;
• Appoints and supervises Secretariat;
• Takes over tasks of the Board in between meetings in
case of urgency;
• Has other powers that are conferred by the GA or Board
and minuted
• Chairs advisory bodies (except youth Committee)
• Has responsibilities in a number of policy areas (see
EXEC committee report)
What does EDF board do?
Acts in the common interest of the Association and of the whole membership of
the Association.
Is the key link with EDF constituency
Decides by consensus and meets 3 times a year
Is accountable to the General Assembly
Prepares the draft annual work plan;
Prepares the draft annual budget and accounts;
Supervises the daily management of EDF and manages EDF;
Supervises the management of the finances of EDF in conformity with the
Supervises the work of the Secretariat
Supervises the co-operation between the Association and third parties;
Supervises the external relations of the Association;
Decides on the membership of EDF to other organisations;
Approves membership applications and excludes members;
Is responsible for Committees
Has all other powers given by the GA
What does EDF Secretariat do?
• Implements the broad policy decisions made by the governing
• Performs the day-to-day tasks/administration;
• Coordinates and implements the annual work programme;
• Coordinates and implements the decisions of the Executive
• Assists the Executive Committee, and in particular the
• Organises the meetings of EDF
• Represents EDF within specific tasks.
• Is accountable to the Executive Committee.
• The Director coordinates the work of the Secretariat and
represents the Association externally in its daily management
What does EDF Secretariat do?
• Director: Carlotta Besozzi: Community based services
• Deputy Director: Javier Güemes : International Cooperation
and IDA
• Virginie Niyonzima: assistant to the Director (& Executive
• Etienne Cuche: Parliamentary Officer (Youth)
• Simona Giarratano: social policy Officer.
• An-Sofie Leenknecht: Human rights officer (women)
• Marie Denninghaus: Mobility & Transport
• Alejandro Moledo: New technologies & Research Officer
(Nadège Riche)
• Lila Sylviti: Communication Officer
• Muriel Da Via: Finance Officer
• Ann Vervaecke: Event Officer
How do we work?
monitor EU initiatives to mainstream disability rights
propose new legislation and policies
Provide expertise to decision makers
Partner with organisations
EDF Work priorities 2014
EDF is currently running 4 top campaigns:
 Observatory of the crisis
 Campaign on Freedom of
 European elections
EDF Work priorities 2014
top campaigns
 Observatory of the crisis
The Economic crisis in the EU is having devastating effects on
persons with disabilities.
EDF has created the EDF observatory on the impact of the
economic crisis on the rights of persons with disabilities.
The Observatory monitors, through collection of examples by EDF
members, measures taken by EU member states, European Union
institutions and International financial institutions.
EDF Board has also issued recommendations to the EU
institutions on a Social investment pack
EDF has made the crisis a central issue of the European
Parliament of persons with disabilities in December 2012
EDF Work priorities 2014
top campaigns
 UN Convention on the rights of Persons with disabilities
Full enjoyment of all Convention rights by all persons with disabilities in Europe is
the overarching objective of all EDF work. The letter and the spirit of the
Convention guides our strategy, annual work programmes as well as
individual policy areas and projects that we promote.
Our work on the UN CRPD is fivefold:
1. Work within the EU framework – the independent mechanism that has been
created at EU level, in compliance with article 33.2, to promote, protect and
monitor the implementation of the CRPD. Following a successful advocacy,
EDF has ensured that it is a full a full member of the Framework. EDF has
recently been nominated as Chair of the EU Framework.
EDF Work priorities 2014
top campaigns
UN Convention on the rights of Persons with disabilities
EDF is advocating for a full and unconditional implementation of the UN
The EU must change the way it deals with Human rights policies, enacts
legislation and policies and manages its own institutions.
EDF had a first meeting with the Director-Generals of European
Commission services on the CRPD, and is looking at a similar meeting
with the Council of the EU.
EDF is also pushing for the creation of a task Force on the CRPD at the
European Parliament.
EDF is constantly lobbying to make sure that individual CRPD articles are
taken into consideration by the EU while designing and implementing
legislation, programmes and policies.
For example, EDF relies on Article 9 “Accessibility” and 19 “Living
independently and being included in the community” during its advocacy
work on the European Structural Funds,.
EDF Work priorities 2014
top campaigns
UN Convention on the rights of Persons with disabilities
• EDF is supporting its members in their efforts to
implement the Convention at the national level.
• EDF organises capacity building, trainings and
seminars to improve members’ understanding of UN
CRPD and facilitate their exchanges with the UN
CRPD Committee using expertise from members.
• EDF is also working on a parallel report to the UN
CRPD Committee for the implementation of the
Convention by the EU.
EDF Work priorities 2014
top campaigns
Freedom of movement and web accessibility
• EDF advocates for the removal of barriers that prevent persons
with disabilities from being able to work, establish themselves,
study and travel and have easy access to goods and services
across the EU
• EDF has engaged in intense advocacy work on:
• the European Accessibility Act,
• the proposed directive on the accessibility of public sector
bodies’ websites
• the European Mobility Card.
• In 2012, EDF has produced the Freedom Guide – a
comprehensive, detailed and essential advocacy tool to show
barriers faced by persons with disabilities.
EDF Work priorities 2014
top campaigns
The European elections
to ensure that disability is on the campaign agenda
to influence the candidates to the European Parliament as well as
the establishment of the new European Commission.
• The Board adopted a manifesto in May for political parties
calling for:
Accessible elections
Candidates with disabilities
Political programmes including disability rights
• Meeting in June with EP political parties leaders with joint
• Preparation of a new manifesto and campaign strategy
EDF Work priorities 2014
EDF work programme 2014
Besides the campaigns, EDF will work to
mainstream disability rights in :
1.Effective Protection against Discrimination (incl.
the advocacy for the adoption of the equal
treatment directive)
2. Fundamental rights and justice: Access to justice
and procedural safeguards; civil protection and
emergency management
3. International and development cooperation
EDF Work priorities 2014
EDF work programme 2014
4. Social inclusion (which will include work on
employment, education, Access to Social
Services, taxation and Structural and
Investment Funds)
5. Transport
6. Built environment
7. Consumer issues
8. research and innovation
9. contribution to the work and activities of the
European Standardisation Organisations
EDF Work priorities 2014
EDF work programme 2014
Target groups in EDF:
• women with disabilities
• young persons with disabilities
• persons with disabilities requiring a high level of
External representation
EDF is member of:
• International Disability Alliance
• EU Framework on monitoring UN CRPD
• Social Platform
• European Women’s Lobby
• EESC liaison group with civil society
• European Year of Citizens Alliance
External representation
EDF participates in:
• High Level Group on Disability
• Council of Europe Committee of experts on the
rights of persons with disabilities
• European Quality in Social Services award
• Academic Network of European Disability experts
• Project Working Group for InclEUsive Card
• ICT Multi-Stakeholders Platform;
• ITU ICT and Development Global Consultation;
• Standardisation mandates
• Smart Buses High Level Group
European Disability Forum
Find out more about us!
[email protected]