Blog post by: Josipa Friščić Communication Officer at Inclusion Europe
750,000 persons with intellectual disabilities are confined to large segregated “care” institutions, while another 388,099 reside in smaller facilities, according to Inclusion indicators report of Inclusion Europe. Further 39,000 are subjected to living in psychiatric hospitals.
Despite commitments by the EU member countries to uphold the rights and inclusion of persons with disabilities, many still face denial of basic rights. 16 countries have reported plans for deinstitutionalisation, but there remains a significant gap between rhetoric and reality in ensuring the well-being and rights of people with intellectual disabilities.
In 21 countries few or no adults with intellectual disabilities live in their own place. That is a far cry from how adults in Europe typically live.
Many adults with intellectual disabilities live with their parents until they are unable to provide daily support. Family members become disability support providers instead of being just parents or siblings.
For the hundreds of thousands segregated in “care” institutions, “there is no room for real life inside such walls,” said Ake Johansson, who spent 32 years of his life in a residential institution for people with intellectual disabilities.
“The will to leave is broken down.”
Institutions are places where people are not able to make choices about their lives. Member countries of the EU should not support existing institutions, and they need to implement deinstitutionalisation.
“I know my life and all what stands on very fragile legs,” said Senada Halilčević about her fight for and independent life and for being included in society. “I am always afraid I might have to return to an institution and lose my freedom.” Countries need to do better in supporting people with disabilities to live independently and be included.
People with disabilities need to have their legal capacity respected, so they can decide where they want to live. For people with intellectual disabilities, this also means that supported decision making needs to become the norm and replace guardianship and other forms of substitute decision-making. A choice must be a real choice, informed and based on actual alternatives, not forced by a the lack of options. EU member countries must make sure that people with intellectual disabilities have access to housing, and to good support.
Living independently does not mean doing everything by yourself without any support.
Independent living is about having choice and control over their own lives. It is important for people who used to live in institutions to get the opportunity to build social relations and a support network. They need to have the space and time to grow and develop. Making potential mistakes is part of the process.
Institutions aren’t just buildings; they’re mindsets that hold people with intellectual disabilities back. Even with promises to change, people with intellectual disabilities, and people with complex support needs, are often left out and remain institutionalised and isolated.
True inclusion means letting people live where they want, with the support they need, and the respect they deserve. It’s about tearing down walls and building a world where everyone belongs.