Everyone has the right to choose where and with whom to live and to be included in the community. Yet, nearly 1.2 million people across Europe are deprived of this fundamental human right and still live in institutions, hidden from the rest of the society. Keeping people in institutions is a human rights violation. Residents of an institution do not have any privacy or personal space and cannot make their own decisions. They do not have the freedom to make day-to-day choices, such as when and what to eat, when to sleep or with whom to spend their time.
Deinstitutionalisation is a necessary step in fighting the segregation of persons with disabilities, but it is only the first step to ensure their inclusion in the community. An effective transition from institutional to community-based care is fundamentally important to ensure independent living. This should include the revision of legislation that deprives persons with disabilities from their legal capacity and places them under guardianship. Suffering from the life-long impact of institutionalisation, people who have been locked up in institutions need appropriate support, services and real opportunities to live their lives independently. However, independent living is not possible without being recognised before the law on an equal basis with others.
This Tuesday in Geneva, as part of its 15th session, the United Nations Committee on the Rights of Persons with Disabilities hosted a Day of General Discussion on Article 19 of the UN CRPD: the right to live independently and be included in the community. The aim of this event, which gathered experts from academia and civil society, was to discuss gaps in the implementation of independent living and inclusion in the community and to exchange on standards for independent living. The discussion will help members of the Committee to develop a General Comment on Article 19. As you can read in our submission, Inclusion Europe advocates for the inclusion of all persons with disabilities in the community. It is only through the development of much needed community-based alternatives responding to the needs and wishes of each individual that we can ensure independent living for all.
Senada Halilčević, President of the European Platform of Self-Advocates (EPSA) and Vice-President of Inclusion Europe, was invited by the CRPD Committee to take part in the panel discussing deinstitutionalisation and community-based service. As a survivor of institutionalisation, she addressed both her own and Inclusion Europe’s main concerns on the implementation of Article 19 of the Convention, and advocated for equal opportunities for persons with intellectual disabilities.
“Education and employment are crucial to live independently. We should all demand that the UN CRPD is implemented in every country. The existing laws have to change to respect the UN CRPD”, said Senada Halilčević when asked about the urgent actions needed to ensure independent living. Indeed, having a job is a key step towards independent living. Most persons with disabilities who have lived in institutions were denied access to education or received inadequate education in special schools, preventing them from obtaining relevant qualifications to find a job. As Inclusion Europe’s Vice-President has underlined, “Special schools mostly teach professions that nobody in the open labour market needs. Special schools separate persons with disabilities from their peers with very little opportunities for personal growth and independence in future life.”
Highlighting the perspective and experiences of persons with intellectual disabilities, Senada Halilčević recalled that no one should be left behind on the road to full independence. Persons with complex needs and severe disabilities should also be offered the same opportunities. The way society and service providers see and treat persons with intellectual disabilities needs to change. Support services should empower persons with intellectual disabilities and give them the freedom to express their opinions and wishes. No one can be truly independent when prevented from making their own decisions, accessing regular public services, managing their own money or having a job.
Her testimony perfectly highlights the importance of a genuine transition from institutional to community-based care:
“Many persons with intellectual disabilities still depend on institutions, support services and parents. Self-advocates complain that support services and staff still have much control over them. They often do not respect self-advocates’ opinions and wishes. This is because the old ways of thinking, common for institutions, are still present in support services. Although the process of transformation of institutions in support services for living in the community is a positive step ahead, we must be very careful. Instead of big institutions, we could end up with thousands of little “flats and apartments” in the community where people would still not have the freedom to make choices.”
Finally, Senada Halilčević emphasised that persons with disabilities should be actively involved in planning, implementing and monitoring deinstitutionalisation projects and in the planning of community-based services in order to foster meaningful change: “We should also be the ones participating in policy-making actively in our communities, so we can be the generation that leaves the opportunity to other generations to live independently.”
You can read Senada Halilčević’s full testimony here.
For more information about Inclusion Europe’s work on independent living, please contact Inclusion Europe’s Secretariat at secretariat@inclusion-europe.