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Easy-to-read report

Publication date:June 2012

Choice and control: the right to live independently - Experiences of people with intellectual disabilities

This summary in easy read format provides information about FRA’s work on the right to live independently.

Objectives - Why this project and for whom?

clip art - disability project meeting

The project was aimed at providing a better understanding how the fundamental rights of persons with mental health problems and persons with intellectual disabilities are safeguarded in the EU and where violations of rights occur.

Although they are two distinct groups of individuals, stigma is the common reaction to both. This leads to social exclusion and discrimination. Therefore both groups are also likely to face similar barriers to full and equal participation in society.

Details - What did the project involve?

The project consisted of three components: legal data collection, social data collection, and network building.

Legal data collection

In June 2009, FRA launched comprehensive legal research into national and international human rights guarantees available to persons with intellectual disabilities and mental health problems. The legal study covered all relevant aspects of the anti-discrimination and equality framework. In particular it focused on the incorporation of the UN Convention on the Rights of Persons with Disabilities (CRPD) into national law in EU Member States. For more about the CRPD

The study also looked into the protection of specific fundamental rights, such as the right to life, freedom from torture, the right to privacy and right to family life, and the right to liberty and security, and a fair trial. Finally, the issues of involuntary placement and involuntary treatment as well as competence, capacity and guardianship are at the core of the legal data collection. The data was collected by FRA's network of legal experts (FRALEX).

Social data collection.

Data collection on the social situation of people with intellectual disabilities and mental health problems started in 2010. Desk research covered all EU Member States. In addition, primary data was collected in Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the UK.

clip art - involuntary placement

Interviews were conducted with people with actual experience of intellectual disability or mental health problems, their families and carers as well as with service providers and health, social, disability and legal professionals.

The study focused on the experiences of institutional care and treatment, options and challenges for independent living and access to justice for people with intellectual disabilities and mental health problems.

Stakeholder engagement and network building

FRA consulted with different stakeholders throughout the project. It was involved in setting-up of networks of organisations dealing with the rights-based approach to disability to make research policy and practical. Examples include:

Stakeholder meeting - 4 and 5 November 2010

The first FRA disability networking meeting that took place on 25 November 2009. The meeting sought to consult with relevant organisations working on the project's objectives and the scope of future stakeholder engagement activities. The meeting brought together FRA stakeholders from European Commission, Council of Europe, national governments, equality bodies, National Human Rights Institutions as well as civil society.

Over 40 people from service-user organisations, psychiatric associations, legal organisations, the European Commission, the Council of Europe and national human rights organisations came together to discuss FRA's disability work. For more about this meeting.

Innovation - What's 'new' about the project?

This was the Agency first project in the area of discrimination on the grounds of disability. In the spirit of the UN Convention on the Rights of Persons with Disabilities, the Agency recognised the capacities of people with intellectual disabilities and mental health problems by incorporating them directly into the data collection process.

Outputs - What did the project deliver?

Throughout the course of the project, a series of reports were released. These reports summarised the findings from the comparative legal research and the research on the social situation of people with intellectual disabilities and people with mental health problems.

In addition, the project lead to the development a series of easy-to-understand information products and easy read materials to simply explain what are the rights of people with disabilities, and what the project was doing and aimed to achieve.

Related Information

This project was inspired by the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and Optional Protocol, which represent a significant change to the way disability has been conceptualised. It establishes disability not so much as a social welfare matter but as a human rights issue and matter of law.

The Convention reflects a disability strategy, which combines anti-discrimination, equal opportunities and active inclusion measures. It identifies areas where adaptations have to be made so that persons with disabilities can exercise their rights, and areas where the protection of their rights must be reinforced because those rights have been routinely violated. The European Community itself is a signatory to the Convention.

This project page was last updated on 19.09.2013