A Bad Investment for Europe

At a meeting today in Brussels, representatives from the European Parliament, European Commission, Permanent Representatives of Member States to the European Union, and civil society organizations came together to discuss European obligations under the Convention on the Rights of Persons with Disabilities. Launched at the meeting, a new Mental Health Initiative report finds that Member States are acting contrary to European law by investing EU Structural Funds in institutions for people with disabilities rather than supporting community-based services.

It is hard to understand why, in 2012, there is still a debate about whether institutions are good or bad for people with disabilities. Why is it so easy to ignore and dismiss the experiences of the thousands of people who are still locked away in these institutions? Why are people with disabilities invisible to so many governments?

In many institutions in Europe—especially in Central and Eastern Europe—the unwilling residents are dehumanized. This is devastating for any person. Most of us have the freedom to come and go from our homes as we please. In institutions, residents who are considered difficult are tied up. Others are sent to solitary confinement, sometimes for days on end. The desperation and hopelessness faced by these men, women, and children are absolutely mind numbing.

The European Union and its Member States have an obligation to ensure that European taxpayer money is invested in a manner that respects human rights and fundamental freedoms. These are among the basic values upon which the EU was founded.

Structural Funds investments in institutions are particularly disturbing considering that the EU has ratified the United Nations Convention on the Rights of People with Disabilities (CRPD). The CRPD is legally binding on States Parties and applies civil, cultural, economic, political, and social rights to people with disabilities. In particular, Article 19 of the CRPD affirms the right of all people with disabilities to live in the community.

In disbursing Structural Funds, the EU is a donor and thus has a responsibility to prohibit investment in projects that violate its values, not to mention its laws. Member States are re-granters of those funds, and they must also be held accountable for investments in their countries.

Our report, The European Union and Community Living, features legal analysis from Queen’s Counsel Richard Gordon on why the use of Structural Funds to perpetuate institutionalization is contrary to the CRPD, and therefore also contrary to EU law. The CRPD recognizes that it is society that disables people by designing everything, in the broadest sense, to meet the needs of the majority who are not disabled. It acknowledges that society can do a great deal to reduce, and ultimately remove, most if not all disabling barriers, and that doing so is society’s responsibility rather than that of the person with a disability. While people have physical, sensory, intellectual, or psychological differences that may cause functional limitations, these need not lead to disability unless society fails to account for them and does not find ways to include all people, regardless of their individual differences.

The time is now for the European Commission and its Member States to take responsibility for ensuring that Structural Funds investments are no longer used to perpetuate the social exclusion of any European citizen.

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What is a "considered difficult" institutional resident? Perhaps, Ms. Klein, you could enlighten us as to the real meaning of this description. After you have done that, please be kind enough to inform us of how this "considered difficult" person could be equally, safely and successfully integrated into a neighborhood consisting of a 99% majority of "NOT considered difficult" residents.

In many institutions staff tie residents up using their own clothes-in a mock straight jacket- for not following the arbitrary rules. This could mean not eating breakfast at the scheduled time or refusing to go to bed. These absurd conditions do not exist when people live in communities.

Dear Clearhead,
In an institution anybody is considered difficult who can't, or don't want to follow the rules, which in most cases are against basic human rights.
Anybody can live and have the right to live in the society but differs only the support we need for that. We need support as well. When you have a problem or you are sad probably you are asking for the support of friends or relatives.
Living in the community for people with intellectual disabilities is almost the same. The difference is that some of them might need support on shopping, or cooking, or working. Some of them need 24 hours support per day, some of them only 4 hours per week. Depends of each person. Investing in community based services means to invest in human rights, in real life, and you would be surprised how nice and helpful neighbors can be people with disabilities. But speaking of the 99% of Not considered difficult: a husband without any disability who beats his wife and kids when he is drunk is or not a difficult neighbor?

What exactly are community-based services in this context? I agree that institutionalization can be highly problematic but not sure I understand where you draw the line between an institutionalized living arrangement and one that is community-based.

Examples of community-based services are supported housing, supported employment, inclusive education, and day programs. These services allow people with disabilities to live in communities receiving the support that they need to participate and be included in society. To be very clear: the people in the institutions that I talk about in the blog are ALL people who are inappropriately and unjustifiably institutionalized. Not one of them has committed a crime, they are not a danger to anyone, but they are given a 'sentence' in an institution, which most often means a lifetime of exclusion, neglect, and too commonly, abuse and exploitation. They are institutionalized because people with disabilities are subject to severe stigma and discrimination, and because many societies simply do not develop alternatives in communities to institutions, even though institutionalizing people solely on the basis of a disability label is a grave violation of their fundamental human rights- not to mention that it is contrary to the UN CRPD as well as to many national policies. So, there is no line to draw here- the community is for all people, not some people. And only when ALL people are included will societies be truly tolerant, open and civil.

Probably for the majority of "society" is hard to believe that a person with intellectual disabilities can work, can have a family, can have fun, can be happy or sad, can smile or can be angry, can be tired or can be energic. Actually they can as anybody else. And what is more important, they have the right to!
Community based services, dear Jonny, means that a person with intellectual disabilities can have a regular life like yours or mine. Yes, they need support for that but rather then investing in the old big institutions for hundreds of people, it would be better to invest in the service, in the way of support.
Having a job and living in a community not only gives the feeling of being free and useful for the community but in the same time people with intellectual disabilities will contribute to the society they live instead of being assisted from your taxes.

The continuance of the policies that require people who do not conform to some kind of arbitary "norms" to be excluded from society is difficult to understand in this so-called enlightened age. If I am born with one leg shorter than the other, that does not mean that I committed a crime, so why should I receive a life sentence in an institution for that? As a citizen of Europe, have I less rights because I am blind, or lame, or have a different level of intellectual or physical ability than my neighbour?
A civilised society should be able to ensure that every person is supported to live the best life that they can, regardless of their ability. Locking up people who have committed no crime makes no sense at all, when it is proven that everyone can live their lives in society with the right supports. The fact that tens of thousands of people in Eastern Europe in particular are still incarcerated in inhumane institutions two decades after those communities were freed from oppression brings shame to the people who allow this to happen.
This issue should be the number one priority for governments, instead of being at the bottom of the list, but the reasons for this lack of progress are simple. Corruption means that the transparency in allowing allowing people to live in society would put an end to the massive skimming of funds that occurs in the management of institutions. Giving people control over their own lives would put an end to that particular gravy train for a lot of local officials and directors of institutions.
Effectively, institutionalisation equals corruption, and the higher the level of institutionalisation in a society, the more corrupt it is; simple as that. The people within governments and local authorities who oppose deinstitutionalisation are usually the ones who are profiting from the current system.

Good thoghts!!! we should have community based intervation rather then institution based.

I totally agree with Judith Klein, 'institutionalization" of people with disabilities proves to be" uneffective, inhuman and should be unacceptable"! Parents and families suppose to be the best people to accomodate theri own children. With inclision, support for parents and families of people with disabilites we can keep those people live with dignity and learn how to respect them and learn from them.
Thanks Ms. Klein & keep on your grat work.
Juana Odeh

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