The project examined the situation around fundamental rights for persons with intellectual disabilities and persons with mental health problems in the European Union. The project was guided by the philosophy presented in the Convention on the Rights of Persons with Disabilities (CRPD) and was implemented with the full involvement of people with intellectual disabilities and mental health problems and their representative organisations.
This project constituted part of a wider project looking at the legislation, policy and practice of fundamental rights protection for persons with intellectual disabilities and persons with mental health problems. While the legal mapping (conducted by the FRA's network of legal experts, FRALEX) outlined the fundamental rights framework at national and international levels, the objective of this project was to examine the situation on the ground in everyday situations.
Members and organisations of the two target groups were actively involved in the project and were an important asset in ensuring that the research had been guided by, and addressed questions of, authentic concern to both target groups.
Our team consisted of:
In 2010 we began our social data collection, with a focus on the following four key research areas:
Desk and field research
Desk research was completed for all EU Member States.
Additional fieldwork reflected the situation in nine of the EU Member States (Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the UK) and consisted of interviews, focus groups and personal accounts by researchers of certain situations based on their own direct observation.
The purpose of the interviews was to gather primary qualitative data about the experiences of people from the two target groups, in connection with experiences of community living, legal capacity, the making of important decisions in a community living context, and issues related to community safety and access to justice in this context. Where appropriate, experiences of institutional living were also explored. In addition, all interviews allowed the opportunity for interviewees to detail their life history.
Two types of focus groups were conducted by the country researchers from the nine Member States: [a] with target group members and [b] with other stakeholders (separately conceptualised around the two main research strands – rights of persons with intellectual disabilities and rights of persons with mental health problems)
Interviewees also participated by sharing their experiences and viewpoints via the qualitative research method photo voice. This method is often referred to as "visual voices" (telling a story through pictures).
Peer review meeting
On 8 and 9 November 2010, a two-day peer review meeting was held in Vienna, Austria, This included work group sessions and dedicated one day to each of the target groups. This division offered the target groups the opportunity to provide meaningful feedback on the preliminary results of the study.
Our country researchers produced desk reports for each of the EU Member States which detailed relevant policy development and impact in their country between 2005 and 2009 and made use of data, research and material provided by target and stakeholder groups.
On the basis of the field research, country case reports were drafted by our country researchers from the selected nine EU Member States and illustrated, in greater detail, the qualitative data and personal accounts identified.
The research undertaken for this project revealed that the lives of the participants in the study had been disadvantaged to a greater or lesser extent by practices of segregation, disempowerment, neglect, hostility and discrimination.
Both target groups continually face significant restrictions with regard to independent living, community exclusion, choice and control, housing, support services and broader economic factors.
In addition, barriers to participation and independent living also remain for persons in the two target groups, for both those who have and those who have not lived in institutional settings. The problem of institutional living requires multiple strategies as well as the dismantling of guardianship laws and the introduction of more methods of providing enabling support without depriving people of their legal capacity.
Drawing on data collected and research conducted within the framework of this project, the European Union Fundamental Rights Agency published the following three reports on Choice and control: the right to independent living (June 2012), Involuntary placement and involuntary treatment of persons with mental health problems (June 2012) and Legal capacity of persons with intellectual disabilities and persons with mental health problems (July 2013).
Fundamental Rights of Persons with Intellectual Disabilities and Persons with Mental Health Problems – FRA D/SE/10/02 (2010 - 2011)