ENIL – European Network on Independent Living Legal Capacity Fundamental Rights Agency Conference Stakeholder meeting 4-5 November 2010 Jamie Bolling– Executive Director

To present: ENIL, ENIL issues and key concerns Personal Assistance (PA) as a tool for human rights Independent Living and PA Answers to the FRA questions

What is ENIL? The European Network on Independent Living European wide network of disabled people and our organizations A cross-disability organization Start Strasbourg years Strasbourg Freedom Drive 2009 Lobby organization at local, regional, national and EU level, projects like ECCL

ENIL Issues Personal Assistance is a human right Free our people now! Close institutions. Ratification of the UN Convention on the rights of PWD and Optional Protocol Freedom of movement for PWD – portability of services Representation of PWD at all levels and in all areas

ENIL key concerns About 1.2 million disabled people are living in institutions across Europe and Turkey which for the most means no access to legal capacity (The DECLOC report). The stigma and lack of expectations for people with intellectual impairment - solutions other than institutions are too often not even considered. Lack of community living programs.

Recent figures Human Rights Watch research - Croatia More than 4,000 persons with mental disabilities are living in institutional settings in Croatia, only seven people in supportive community living programs. The situation for people with intellectual disabilities: facilities for only about 250 people in community living programs, while approximately 5,000 remain in institutions.

Personal Assistance is a human rights tool! Funding follows the person and not the service provider, Users free to choose the preferred degree of personal control according to needs, capabilities, current life circumstances, preferences and aspirations. Options include the right to custom-design services, which requires the user to decide who works, what tasks, when, where and how.

Personal assistance and Independent Living Personal Assistance is a human right, All types of disability to be included, Based on the individual need, Choice for the administration of the service, National governments should carry the cost, Wages comparable to the employment market

Steps to be taken to ensure rights in everyday life Allowing the voices of the individuals and legal guardians concerned to be heard Not seeing people through stigma, categorically and in hierarchies Services with an Independent Living approach – user controlled – what, how, when and where

My experience on how rights are protected: Rights are protected through legal guardians, relatives and family members who respect the individual persons rights Reporting of the breach of rights Active NGOs who monitor rights Activists who make themselves heard To change? – priorities that say that rights cost too much! Hierarchy of rights!

Engagement for a human rights approach Disability and Mental Health Issues User involvement at all levels of decision Putting the persons needs in the driving seat – services to be based on individual needs A new order of priority – now often the salary of staff which is prioritized not peoples needs An independent living approach- article 19

Need of Human rights education Human Rights Training with Independent Living ideology Training in Independent Living definitions –Personal assistance in institutions is not independent living –Parallel services segregate and are breaches of human rights

Thank You!