Milan Šveřepa

It seems that deinstitutionalisation has become an exercise in wordsmithing

I was invited to speak during a workshop of the European Parliament’s Committee on Employment and social affairs. The workshop was about Deinstitutionalisation and independent living of persons with disabilities.

The workshop, chaired by Li Andersson MEP, took place on 2 December 2024 in Brussels.

Thank you for the opportunity to speak on behalf of people with intellectual disabilities and their families on this panel of stakeholders of deinstitutionalisation.

Having said that, I think it’s important to say that when it comes to deinstitutionalisation, people with intellectual disabilities don’t just hold a stake. They hold the short end of a straw.

Reports show there are hundreds of thousands of people with intellectual disabilities in institutions.

Reports also show that people with intellectual disabilities, specifically those with complex support needs, tend to be overlooked in deinstitutionalisation. They are least likely to benefit from anything that is being done to deinstitutionalise disabled people in Europe.

And let’s not forget what we were reminded by one of the members of the committee – the hundreds of thousands of people who are in danger of being put in an institution, and their family members who live in dread of this as well.

It seems that deinstitutionalisation has become an exercise in wordsmithing. There’s a lot of talk, there’s barely any action.

It also appears that deinstitutionalisation has become about many things but not about closing institutions and supporting people who are segregated in institutions to move out of those harmful places, to set up new life in a new place of their own with the support they need included in the community.

This means, of course, that we need refocusing of activities both at EU level and especially at national levels.

There needs to be a clear identification of population that is institutionalised. I find it hard to believe that still, nobody can answer the question how many people are institutionalised in each EU country.

There also needs to be a clear action plan to close these places.

And of course, there needs to be provisions in EU funds that condition access to EU funds on how the country acts on the plans.
It’s not enough to write some words in documents that might look like a strategy. What is important is to act on those words.

There needs to be condition in access to EU funds connected to how each country progresses on closing institutions and in supporting people to find a new place and a good support included in the community.

I would also say it’s important to learn from the work that is being done around Europe.

Some of that has been discussed. There’s of course a lot that is not good enough in terms of the deinstitutionalisation – or should we not call it deinstitutionalisation at all?

But there’s also a lot that is being done.

Let’s not forget that the majority of people with intellectual disabilities are supported in their homes by their family members.

There are many community-based services supporting people.

And I’m making this point to make it clear that, obviously, people know how to support people with disabilities to live independently in the community.

There is nothing new to invent in this regard.

There is no more place for excuses from policymakers and from service providers.

I’ve had it listening to all kinds of lists of barriers from service providers: What kind of conditions need to be done for this or done for that.

The path forward is clear, the demand is clear, and the practice is also there that can be built on.

And a short reaction to what was said by one of the speakers earlier: I find it a little rich to say there is not enough evidence on abuse in institutions, or violence in institutions.

I could sit here for a very, very long time just recollecting instances of abuse and violence from the top of my head.

Not leaving aside that institutionalisation itself is an act of abuse.

To conclude: As movement of people with intellectual disabilities and families, as a movement of people whose hundreds of thousands are institutionalised, and are not benefiting enough from all the effort or the funds being spent on deinstitutionalisation:

I urge the Parliament to do anything in its powers to make sure that the next budget conditions access to EU funds on actual deinstitutionalisation in each country.

Thank you.

Responding to questions from members of the Committee:

Employment:

Preventing institutionalisation:

  • There needs to be good support. There needs to be access to housing.
  • Institutions need to be closed down. Because they not only harm people. They are not only a human rights problem, they are also economical problem. As long as they exist, they will consume resources that should be available to community-based support.
  • It would also benefit preventing institutionalisation if authorities and service providers communicated clearly what it means to be in an institution. When we look at how institutions are being portrayed, and portray themselves – it’s as “safe places”, “good service providers”. And they aren’t either.

Examples of deinstitutionalisation:

  • It’s one of the crucial issues in this conversation: How can we see progress on a certain policy when we cannot even define the starting point – As I said earlier, it’s hard to believe countries cannot answer how many people are institutionalised.
  • Also hard to have this conversations if it is not clear what the outcome should be – including that it should be also closing institutions.
  • As examples: Recently, one institution was closed completely in Prague, Czechia. Another in Slovakia, called Slatinka. There are many more. As a specific example of worths mentioning – Ceva de spus, Romania; people who survived institutions and are helping others now. There work is extremely useful in learning in how support to people leaving institutions could work.

More about the workshop:

More on the topic:

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