Former EU Commissioner Vladimír Špidla spoke at the “Towards Inclusion” conference in Brussels in January 2020.
To mark Mr Špidla’s 70th birthday this week, we publish the transcript of his speech reflecting on how what started when he served as Commissioner led to changes towards deinstitutionalisation.
Already 10 years ago we started on this path and things were very different.
When we prepared the report, it was something that I took on very readily and I was happy that we could contribute to a real change: sometimes you draw reports but the policy stays the same. Fortunately, this time it was different.
The report that we drew originated within discussions that were held in the European Commission; with my colleagues, we chose to follow this method for many reasons but in particular because this whole issue is very complex and complicated because of the many prejudices around it. Indeed, it is linked to many national specificities and traditions: there are also a lot of random facts involved and it is a very sensitive issue. So we needed to try and find a way in order to say the things that we wanted without hurting anybody’s sensibility: that way was the report.
The Expert group
The report was put together by an expert group and I think it might be useful to talk about the experts and how the group was made up. It was a high level and mixed group, although it was a great deal of cooperation from people representing NGOs as well.
Now, the outcome of the work of this expert group was a series of principles and recommendations for a transition and the recommendations and principles were mainly aimed at the Member States and the European Commission.
The main principles
I would also like to state that the issue of institutionalisation or deinstitutionalisation really is not a financial issue. Obviously, money is important but in reality the reason for which we were going through this transformation was not to save money. In fact, that was quite the opposite, that was not the driving force. All the evaluations and assessments show that expenditure levels remain the same more or less.
But the problem that we were really trying to tackle was linked to – and I hope it might just strive from this concept – it’s to try and achieve all the possible ways of supporting people in their emancipation because any person, no matter the situation, is entitled to be able to blossom, to emancipate and to thrive.
It’s true that there are many real–life problems (societal problems) but this issue of value, dignity, emancipation was always at the heart of our thinking and our work. That was really the most important principle for us.
Our starting point really was the fact that people have the possibility to be in control or influence their own destiny, regardless of the situation they find themselves in (be it with disabilities or not).
I’ve already used the term “deinstitutionalisation” and it’s obviously a difficult term to define but the institutionalisation culture was something that marked our work.
The concept that we took as the starting point for our work was the look at the culture of these institutions. Now, when you talk about this issue in this specific field, one thing is always clear: there are many people affected by this topic.
People who came in contact with institutions are quite homogenous in terms of the group. They can be children, they can be people with disabilities, people with mental illness. It’s quite varied. Hence, if you look at all the potential people that might come into contact with institutions of this type, you can calculate millions of people. And when I worked in this area the number was perhaps not that big. We were looking at few members but now we are looking between 1 or 2 millions across the EU.
To build momentum for change
I would also like to tell you a bit about the challenges that we identified. The concept of the report was not just to carry out a scientific study, but rather to come up with some policy document – the main aim of which was to build momentum for change.
So it wasn’t just a scientific study aspect of this and that’s also why we targeted our report with those recommendations which offered the possibility to Member States to really stand up for the change. Now, the key challenges that we identified back then were as follow:
- Investment. If you make an investment in something you want to see a return and then investing in institutions, it means that you want to use those institutions.
- The second challenge was to try and come up with parallel services so as to have institutional services on one hand but also other types of services in parallel. The problem is always linked in a way to spending and management. So if you have a transitional phase that is too long then the risk is that you do not overcome all your challenges: perhaps you just overcome one or two and that is quite a risky strategy to take.
- The third challenge that we identified was that you are making new institutions but they still carry with them the old culture of institutionalisation so they are new but with the same structure.
- The fourth challenge was the problem of closing down these institutions without offering any kind of alternative. The work case is like that: I remember the United States, for example. They had closed psychiatric hospitals but hadn’t offered any kind of alternative and that was a very serious problem for the people who were suffering from psychiatric illness. And then another problem is the time frame. You might say that in 35 years everything will be solved but that of course is going to throw major problems because this is going to lead to a purely administrative approach. So instead of calling it institution, you call them retirement home but at the end of the day is still the same thing. So it’s on administrative change only.
I would perhaps like to underline some of the other basic principles that lay under our work and I think of course that you always have to bear in mind the comparison of how things were then and how they are now.
- The first principle was really to respect Human Rights.
- The second principle was to try and prevent institutionalisation which means you had new cases and therefore you had to try to find a non-institutionalised solution rather than going down the same one path.
- Then you need to look at the creation of new services I mentioned before. Then the closure of the institution and then perhaps even more complicated a restriction of investment in institutions. That’s something really hard for politicians. The institution exists, these institutions have their own problem and you have to react vis-à-vis those problems. One might say “okay, I have done this and this to help in terms of the social policy” but at the same time, you also need to look at the support and training for the professionals. And that was really important to me.
- We need to offer help to the healthcare workers and carers, those people in the families that informally take home this role: it’s a huge role and a very complicated task. And, of course, they need support – a huge amount of support from everywhere. For example, some kind of training: if you have these skills then you should have the possibility of founding those skills rather than do it on a voluntary base.
I’d also like to stress the need for a holistic approach. I don’t think you can merely resolve the situation by just taking a holistic approach. If you want to really reform psychiatric care, for example, then you have to cooperate and work together with all the services that are covered by other ministries who might have a different agenda. Personally, I think the most important thing is about value. It’s not really something that has to do with technical aspects.
Solutions can’t really be put forward by technocrats or purely scientists. Obviously, scientists and technocrats are important in the whole process but this value concept is much broader than that. And unfortunately, when it comes to value it’s a constant struggle.
You have to fight for this and we can see quite clearly that we made a lot of progress, and I’m very happy about that but we also have to be realistic and look at the other side of the coin. There are things that haven’t yet been sorted, where we haven’t done progress, quite the opposite where we have moved backwards. So it’s a never–ending task; I don’t know if we are halfway down through the path or a third way down the path but the road ahead is long,
I am sure of that and I also think is going to be a never–ending task but at the same time we have to carry on fighting, carry on with the struggle that really is the most important thing.
Transcript based on recording you can watch here.
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
Being visible and vocal on issues directly affecting millions of people requires your support.
Become Inclusion Europe supporter and help us keep doing our work.