ENIL European Network on Independent Living Christian Bayerlein
ENIL About us: History, Aims and Mission, People Institutions P.A. models, terms, advantages Socio-economic advantages The UN-Convention and EU legislation ENIL s P.A. law campaign Freedom Drive 2009 2
History April 1989 - over 80 persons with extensive disabilities coming from nearly two dozens of countries participated in a conference on personal assistance at the European Parliament in Strasbourg. Almost 20 years later, ENIL is present throughout Europe by means of its members: from Spain to Finland, from Ireland to Bulgaria. ENIL is also represented at EDF runs ECCL board. 3
Aims Promote the Independent Living philosophy Develop the concept, principles and definition of Independent Living Promote the development of Centres of Independent Living Carry out training and awareness raising activities at the European level 4
Mission Represent Independent Living Organisations and the IL movement Combat social exclusion and discrimination through disability policies, which allow for Independent Living of disabled people. Embrace the social model of disability in acquiring independence and self-determination by overcoming the barriers of the medical and attitudinal models. 5
Vision Independent Living is about empowerment of disabled people ENIL challenges the social barriers that prevent disabled people from achieving full citizenship rights, control and choice in their respective countries and throughout Europe 6
Personal Assistance (P.A.) P.A. - Buzzword or alternative to caregiving? What is the difference between P.A. and other forms of help provision? P.A. is the alternative, which allows people with high need of help to live as independently as possible. 7
Disadvantages of Institutions Structural constraints, not enough personnel, not enough time Inflexibility Segregation, Separation Dependency Less privacy Less opportunities Less Life Quality Unfortunately, some of these disadvantages regard also (bad) p.a. service providers 8
Models of P.A. Employer Model Service Provider Model Cooperative Model 9
Employer Model Disabled person becomes employer of his/her assistants Labour legislation of the respective state applies Disabled persons get authority directly. This is the main difference to other forms of help provision and models. 10
Authorities Authority over personell (who?) Authority to instruct (how?) Authority over time and place (where, when?) Authority over finances (funding, payment) Authority goes together with competence and responsibility other models 11
Socio-economic advantages Social P.A. models are efficient and transparent They lead to a more cohesive society through better knowledge and risen awareness Disabled people get more independence, self-suffciency, self-confidence, more opportunities, dignity and life quality Economic: A large part of the costs go back to the states budgets (as taxes and social insurance payments) i.e. in Germany over 50% New jobs are created less unemployment Private consume is strengthened (by people who spend more money because they re not unemployed anymore) Less benefits have to be paid by the state Disabled people get better motivation and more opportunities to find a job more positive effects 12
Socio-economic advantages Social: A better society Economic: Motor for economy 13
Different legislation in Europe Germany: No special assistance law, but a bunch of laws for different cases Most of the funding comes from the social welfare system, which is means based Personal budgets recently introduced on state level Still high level of institutionalization Sweden: Assistance legislation since mid 90 s For people who need more than 20 hours assistance per week, different system for those with less need Time based budgets United Kingdom: No P.A legislation Policy that everyone needing social care is asked if they want direct payments since 1996 Independent Living Fund since 1993 Local authority payments -Means tested Large institutions closed, but many smaller institutions (15-30 people) Bulgaria: High level of institutionalization No P. A. legislation on state level Possibility to get P.A. in Sofia but very poor 14
The UN Convention and P.A. Article 19 of the United Nations Convention on the Rights of People with Disabilities says that governments must stop the difference in unequal conditions, stop institutionalization, stop state created dependency and ensure independent living for disabled people. Article 19 says that all disabled people, not just a minority, should have access to personal assistance as a human right Article 4 of the United Nations Convention on the Rights of People with Disabilities says that all States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind... To this end: States Parties undertake: to adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the present Convention 15
The EU and P.A. The EU has no direct authority on social legislation this is only the authority of the member states However, the council of Europe s Action Plan on disability 2006-2015 Action Line 8 Community living states that one aim of community living is to promote schemes which will allow disabled people to employ personal assistants of their choice (3.8.3. viii) 16
ENIL s P.A. law campaign We urge governments and the European Parliament to: Act now: Stop inequalities, Stop segregation Human rights for all Personal assistance for all Make article 19 of the UN Convention a reality Start consulting with organizations run and controlled by disabled people with experience in independent living 17
Freedom Drive 2009 18