ENIL – European Network on Independent Living

Legal CapacityFundamental Rights Agency

ConferenceStakeholder 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? www.enil.eu

The European Network on Independent Living

European wide network of disabled people and our organizations

A cross-disability organization Start Strasbourg 198920 years Strasbourg Freedom Drive 2009Lobby 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 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!

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

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!

•www.enil.eu• jamie.bolling@enil.eu