Jamie Bolling– Executive Director

1. ENIL – European Network on Independent LivingLegal CapacityFundamental Rights Agency ConferenceStakeholder meeting 4-5 November 2010 • Jamie Bolling– Executive Director

2. 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

3. What is ENIL? www.enil.eu • The European Network on Independent Living • European wide network of disabled people and our organizations • A cross-disability organization • Start Strasbourg 1989 • 20 years Strasbourg Freedom Drive 2009 • Lobby organization at local, regional, national and EU level, projects like ECCL

4. 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

5. 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.

6. 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.

7. 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.

8. 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

9. 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

10. My experience on how rights are protected: • Rights are protected through legal guardians, relatives and family members who respect the individual person’s 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!

11. 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 people’s needs • An independent living approach- article 19

12. 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

13. Thank You! • www.enil.eu • jamie.bolling@enil.eu