Living independently and being included

Living independently and being included. Institutions are never an option.

Many people with intellectual disabilities still live in institutions, segregated from society, with little control over their lives, at risk of abuse and harm. Institutions need to be closed, and people with intellectual disabilities need to be able to live included in their community.

Institutions need to close.

Building human connections, being part something, belonging: these needs are human needs. People with intellectual disabilities want to share their lives with neighbours, friends and relatives. They want to live independently and included. And they want to contribute to their community.

Even though the Convention on the Rights of Persons with Disabilities (CRPD) recognises the right of all people to choose where and with whom to live, the reality is still very different for many people with disabilities.

There are still at least 1,438,696 persons living in institutions. Persons with intellectual disabilities and people with complex support needs are most likely to still live in institutional settings.

750,000 people with intellectual disabilities live in large institutions.

An institution is a care setting fitting any of these characteristics:

Residents are isolated from the broader community and/or compelled to live together.
Residents do not have sufficient control over their lives and over decisions which affect them.
The requirements of the organisation itself tend to take precedence over the residents’ individual needs.

Ake Johansson spent 32 years of his life in a residential institution for people with intellectual disabilities and said: “The will to leave is broken down; it does not exist anymore. There is no room for real life inside such walls; this is why it is not to be found there either. You do not live, you exist.”

The risk of reinstitutionalisation

Senada Halilčević spoke about her fight for and independent life and for being included in society: “I know my life and all what I do stand on very fragile legs. I am always afraid I might have to return to an institution and lose my freedom.”

In some cases, people who have left institutions find themselves at risk of having to return into an institution. This can be because the deinstitutionalisation process was done in a wrong way. The most common mistakes:

Closing institutions without appropriate planning
Not respecting people’s rights, not involving them in decision-making
Further investments in existing institutions
Lack or no creation of community-based services
Lack of human resources
Inefficient use of resources
Poor geographical distribution of services

Living in the community

For people with intellectual disabilities to have their right to independent living and to be included in the community there are key policy and funding changes that need to happen. Inclusion Europe listed these changes in its submission to the United Nation’s Committee on the CRPD.

People with disabilities need to have their legal capacity to decide where they want to live. For people with intellectual disabilities, this also means that supported decision making needs to be an option. A choice must be a real choice, not a decision taken due to the lack of other options. States must make sure that alternative options to institutions exist and people need to be able to take an informed decision.

Institutions are also places where people are supposedly living in the community, but in reality are not able to make choices about their lives. Under no circumstances should States be encouraged to further support existing institutions and hinder the deinstitutionalisation process.

Living in the community is especially important for people with complex support needs. Often, it is commonly assumed that people with complex support needs cannot live in the community, whereas they benefit greatly from being included.

People with disabilities need support when moving from institutions to the community and States need to make sure that this support exists. This includes help for people who have suffered from violence in institutions, especially women with intellectual disabilities.

Families are especially important for people with intellectual disabilities at different stages of their life – during childhood and teenage years, and as well when they are trying to find their own way as adults. Parents and siblings must get the support they need so they can in turn help their children or brother/sister to live independently and be included in society.

What is Inclusion Europe working on?

Inclusion Europe has been working on this topic for many years. There have been lots of positive developments: many countries have revised their policies and started moving people out of institutions and into the community.

Living independently does not mean doing everything by yourself without any support. Inclusion Europe pays particular attention to people who have lived in institutions and are now living in the community.

Independent living is about having choice and control over their own lives. It is important for persons who used to live in institutions to get the opportunity to build social relations and a support network. They need to be given the necessary room, time and people to grow up. Making mistakes is part of the process.

Living independently and being included in the community, persons with intellectual disabilities can exercise choice over their lives and have the same opportunities as a non-disabled person. Inclusion Europe submission in regional consultation 2021 (.docx)