Community Not Confinement

They are locked away for years without having committed any crime.

They cannot choose when to wake up and go to bed, what to eat, and with whom they share their lives. They cannot choose when to visit family and friends, whether to get an education, or to hold a job. Without any power or recourse, they face abuse and neglect.

This is life for more than a million people with disabilities across Europe. They are segregated from their communities and confined to long-stay residential facilities known as institutions. Institutions control all aspects of residents’ daily lives.

They are places of confinement.

The United Nations’ Convention on the Rights of Persons with Disabilities ensures the rights of people with disabilities to live in their communities with choices equal to everyone else, and to receive services according to their needs. When the European Union ratified this convention, it became law.

But some EU states in Central and Eastern Europe are spending hundreds of millions of euros intended for development and investments to make states more equal to each other—called Structural Funds—on building or renovating institutions for people with disabilities. In effect, they are spending public money illegally and violating human rights.

The Open Society Foundations Mental Health Initiative has presented a petition to the European Parliament supported by a range of disability rights and self-advocacy groups. We called on the Petitions Committee to press EU decision makers to correct the Structural Funds process, make it transparent, and ensure public money doesn’t support institutions and deprive people of their basic rights.

During our presentation to the committee on March 20, we showed the above short video, Community not Confinement, by one of our grantees, filmmaker Tomislav Zaja. In this video you will hear directly from people who know all about institutions. Some are former residents themselves. They can tell you better than I what it means to be able to exercise choice in their own lives, and to live freely in their communities. There are community-based services that meet the needs of people with disabilities better than institutions, and they don’t have to cost more.

I can tell you this—in my 18 years with the Open Society Foundations supporting the development and the replication of sustainable alternative community-based models, I have been to these institutions in every country of Central and Eastern Europe. Every time I visit, I am destroyed, watching people’s humanity fade as they languish in these places for decades. They become shadows of themselves. For most residents there is no way out, except death. Many long-stay institutions even have their own graveyards, recognizing the appalling but real fact that many of them will live out the ends of their lives there.

Our presentation produced promising results. The committee recognized that this issue is of such importance that they have kept our petition active. They have requested that the European Commission provide further information how Structural Funds are spent, and they have asked other committees including Budget Control and Regional Development—which control how EU money is invested—to advise them.

As the parliament debates the next round of Structural Funds throughout this year, the EU has an opportunity to change course and ensure everyone’s rights are protected. We hope they will seize it.

16 Comments

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There are so many parallels with our work with drug users here--it is amazing when the "cure" in closed institutions is advanced as a solution and community-based alternatives are shorted. The image of the institution with its own graveyard will stay with me.

Thank you for pressing the EU to move beyond "checking the box" and saying they've helped people with mental disabilities. And I look forward to applying some of these lessons to discourage EU support for drug detention centers, which also punish in the name of health, and lock people away for years rather than building their ability to participate in society and be recognized as rational actors who have the biggest role to play in the protection of their health.

Indeed "there's no place like home." How can the EU purport to uphold open society values when it invests in depriving people of their liberty -- whether they are people with intellectual disabilities or people who use drugs? Donors should be a force for values and justice, not an enabler of governments' worst instincts to shut away problems by shutting away people.

Great work! As the promoter of CBR (Community Based Rehabilitation) Approach, I am very curios to hear or read about the experience on any country who did cost calculation of institulization vs. community-based services for persons with disabilities. Please, share any source of such information. I have an intention to initiate such calculation in Uzbekistan.

I have costs to compare CBR and institutional care for children with disabilities in Azerbaijan. You are welcome to contact me directly at gwen.burchell@uafa.az

A compelling plea - no, a compelling demand! - for deinstitutionalization. Excellently done.

As usual, each person picks a side to support in preference to working towards real solutions which unfortunately rarely fit in a box that may be simply ticked.

On one hand, there are many people with mental and physical disabilities who pose a threat to themselves and others if forced to live in the community whilst there are many for whom institutional life is imprisonment without crime.

The real solution requires constant support and realistic assessment of an individuals state without thought for cost efficiency or political correctness so the person and their family are best served by the community but not always within the community.

The people I refer to in this blog are people who are forced to live in institutions but present no danger to themselves or others- and none of them is 'forced to live in the community'. Of course people need support- let's not forget that we all do- regardless of ability-and when people have access to the right kind of support, they can indeed live and be included in the community.

Congratulations to the brave people in this video who have finally been given a voice to demand what is theirs--freedom. You are the voices of the many thousands of others around the world. God bless you in your work!

No matter what, the Idea of no institutionalization is excellent. Let all efforts be put towards assisting these people in their homes and communities in order to allow for proper development and sense of belonging for both the parent, family members and the person with a disability.

Bravo for all those who appreciate the new approach, At USDC - Uganda we work with parents in their communities to assist their children through the community based rehabilitation approach.

A great work you are doing, never stop we have to continued the theory has to change to practice.
I am working for the African countries as well.

No one should suffer injustice.

For another community-based approach with youngsters that have special needs, look up the Kyrgyzstani/United States Organization www.casamission.org. This school based system incorporates parents, community, education and health initiatives to support and sustain these exceptional people.

congratulate.i be live disability ib not shameful ,but it depend on people view,disability people with disability needs to be respected, appreciated as a human being and i am so happy for the voice which raised for JUSTICE

The community/society cannot be for all when some are institutionalized, imprisoned and deprived. Whatever strategies needed to liberate individuals with disabilities should be applied in urgency.

And now, congratulations! This is so important and it's important this is done with care and planning which will ensure success. Thank you! You rally us all!

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