Expertise Centre Independent Living Interviews Dr. Adolf Ratzka:
In May 2012 Dr. Adolf Ratzka visited Belgium for an international conference. Peter Lambreghts had the chance to meet up with the ‘godfather’ of Independent Living to talk about the future of support in Flanders, the UN Convention on the Rights of People with Disabilities and the effects of the European economic crisis.
Hello Dr. Ratzka, welcome in Brussels. Do you like visiting Belgium?
Yes, I have special ties to Belgium especially in the Flanders part, and in the early days I used to come for a week at least once a year.
So you have visited Belgium several times and you have made friends here over the years, including Jan Jan Sabbe. Would you like to tell us something about Jan Jan?
Well Jan Jan was much more to me – or we were much more to each other – than two people working for the same cause. We became good, very personal friends, and would talk most of the time about other things. What I admired about Jan Jan, and where he was some sort of role model for me, was his very intuitive vision about organizations, who to build coalitions with, and how to use existing resources in the community. My position has always been like the underdog working from the outside, fighting my way in so to speak, whereas he felt in already – you just had to look to see how to move the chess pieces around that already existed. That was the skill I admired about him and would often ask him for his advice, and even now that he’s been gone for some time, I think about how would Jan Jan have tackled that question.
I’m quite convinced that in your conversations with Jan Jan he must have spoken, with some enthusiasm I suppose, about Flemish PGB decree from 2001.
Shortly after the Flemish Independent Living Movement succeeded in realizing the first personal assistant scheme in our country, with the PAB decree, only a year later the Flemish parliament decided to change the complete financing system of all support of people with disabilities into what they called the PGB system. This is a direct payments scheme with individualized budgets giving the user real freedom of choice. It can pay personal assistants and/or buy services from service providers.
The current service providers for people with disabilities would have to compete to win and keep their clients instead of getting subsidized for the number of people they deliver care in kind to.
Only, more than ten years later, less that 2,000 people have a PAB, almost 6,000 are on a waiting list and the PGB decree still isn’t implemented. Now finally our current Minister of Welfare declared to realize this new financing system. He appointed a special conversion manager who announced and initiated a public debate on this transition. His debate is currently going on with the culmination of a big conference on June 6 & 7.
The Flemish Independent Living movement is happy that finally things are moving. But we are worried too: will the original idea of direct payments and freedom of choice for all people with disabilities survive the public debate? Will we find solutions for the waiting lists? You see, we are in a very important moment for Flemish disabled people. Do you have some advice for us in this very important time?
Well, you are asking too much from a person who has observed the development only from the outside and hasn’t lived with it. In no way am I an expert on the complicated, intricate social welfare policy here in this country. But the basics are that Belgium and Flanders have a culture of dependency that the powers to be – government, church, unions, the whole system is geared towards ‘taking good care of us’ relying on the family. We’ve not been socialized as persons with disabilities to take command of our own lives. Nobody has thought about this, that each of us is responsible, ultimately, for his or her own life. So we have not been given the means and the movement is too young to have spread. Ten years of course is in some ways a long time, but when it comes to changing the whole culture of dependency it is not long enough.
You know it’s the same in Sweden. We’ve made a tremendous fast start, a kick start in the late ‘80’s early ‘90’s and since then we’ve been loosing step by step, loosing some of our autonomy. And that’s because, as I see it now in retrospect, we have not been able to change the way people look at themselves and the way society looks at us. They still think we are hopeless, helpless cripples, but now they’re getting money – that’s the only difference; and maybe these hopeless, helpless cripples get too much money?
Maybe when I reflect on what you say now, we feel in Flanders that with the introduction of the personal assistants budgets, we thought the fight was won, we would have the personal assistance available now, we weren’t expecting they would put waiting lists on top of that. Maybe the first objective is to raise awareness and make people aware of that they can live a life which is not a dependent one, and as you tell even in Sweden, this movement hasn’t built up strong enough until now.
If you think about it, we’ve got all the arguments. The services built around our ideas and principles have been shown to deliver better quality of life. They promote individual growth and on top of it they are even cheaper. So in times of crisis these should be beautiful and powerful arguments. We’ve got all the cards, but we don’t know how to play them.
So you advise to play the cards well and raise awareness about not having to be happy with second grade solutions, second grade citizenship, that’s good advice for us. Do you have any advice for the Flemish politicians in this stage in this momentum in Flanders?
As a politician I would look at making the best use of public money. And what does that mean; it means delivering quality services at a good price, or using existing resources in the most skilful way. Institutions have been shown to be a waste of human and financial capital, and, more interestingly, recently through the ratifications of the United Nations Convention on the Rights of Persons with Disabilities, the investment in institutions has to be phased out, so any new money in institutions is against the Convention and the country can be taken to court.
Right, that’s a strong and good advice to politicians and a warning to something they’re not aware of to a certain extent I suppose. And do you have any advice to the Flemish service providers?
Ahh, the Flemish service providers have been living in paradise!! As I recall, the late Jan Sabbe once said to me ‘Adolf what do you expect from a country where every Minister of Social Welfare since the Second World War has come directly into office from Caritas (a huge Catholic charity)? They’ve had it made, have a powerful lobby, direct access to government funds, they have had a safe pool of people to ‘take care of’, they needed us and we are still there, we have not left the country, they still make money from us, they are still doing good with us, feeling great about it and getting their brownie points from the public and politicians. But watch out, it´s not going to take too long, in a few decades, things will be changing materially.
And read the United Nations Convention, that’s the spirit that will be the spirit of the future and look at your services, carefully, whether you can keep up with these principles enshrined in the Convention, and you will notice that you will have to do considerable work in reshaping your institutions, and in fact even phase them out and moving in to the business of providing community based services if you want to survive.
With Onafhankelijk Leven (Independent Living Belgium) we are working hard to start up with a cooperative of users of personal assistance. Do you think it is important that we do this?
Well a cooperative has several advantages over, lets say, doing the same thing in the form of say a shareholding company. But, I would first look into other areas actually, other questions, for example, whether the services that you would provide are needed in the community, whether people understand what you offer and whether there is a financial and economic base for these services. In other words a cooperative is a business that needs to survive and for that you need enough income.
So ask yourself first a few hard questions: what are the aims of the cooperative? Couldn’t another form of association achieve the same aims? And most importantly: where is the money coming from. Lots of questions!
Do you think if we want to give people with disabilities, as a group, more opportunities to take control over their life, to have a more independent life, do you think a user cooperative has an important role to play in that or as I hear from your first response, does the movement have to play a role in a business way?
Well there are lots of questions still unanswered here. As I understand, there is an important meeting in June, and maybe the future of direct funding will depend on that. First you need to have the purchasing power in everybody’s hand who needs services, that’s the first. Then, second, you need a multitude of operators who offer services, so the individual consumer can have a choice. Because Independent Living is about having choices. Among these choices, of course, the cooperative has a very important role, because cooperatives are based on the principle of mutual help, of solidarity, and, most importantly, of learning from each other, and learning with each other.
Yes peer support. So these are the important principles that a cooperative entails, that’s a very important element in these range of options. But, the cooperative shouldn’t just be the only provider of services, people should have a choice.
So I hear cooperatives have some conditionality’s, we have to have a direct payment scheme in place which is functioning on a wider scale, then there must be a clear objective and a clear plan and then the first objective is to create freedom of choice and among these different possibilities a cooperative can play a role as one of the possible choices and has some advantages, as you summed them up.
I could elaborate on this, if you look at the Swedish experience, we’ve had the first condition for a long time: for 17 years we’ve been getting the money. Yet the cooperative solution still has only 3 % of the market share. Of all the 16,000 people who currently receive the direct payments only 3 %choose cooperatives. – I’m wrong it’s 12 %! With 3 % I meant the people who are individual employers of their personal assistants. Together these two alternatives have only 15 % and the other 85 % have been growing very rapidly – people who are still with the local governments as providers or with the most rapidly growing sector, with private businesses, companies.
You were invited to Brussels for a colloquium yesterday on Article 19 of the UN Convention and the use of European Structural Funds. It was organised by the Office of the UN High Commissioner for Human Rights. Was it a good and useful colloquium?
Yes, I think it was very useful. I can’t tell how proud I felt that we, a bunch of amateurs way back in the – I’m talking about myself actually – in the late 70’s, early 80’s who started with this. Independent living – what’s that? And now it’s a household word that’s used in documents. Even the United Nations talk about this, so we’ve had a fantastic journey behind ourselves. Now I can see some advantages that we have been able to bring about over those years and there’s the promise of even more in the future.
What the meeting yesterday brought out is that we have instruments and even money behind us, like the present use of EU money for refurbishing or even building new institutions, residential institutions, in central and eastern Europe is against the Convention. The EU can actually be taken to court for subsidizing the construction of residential institutions according to the Convention. Now that’s a fantastic leverage that this little movement that started way back 30, 40 years ago has accomplished
So yes that’s certainly so. We will report more on this colloquium in one of the next ENIL and Onafhankelijk Leven (Independent Living Belgium) newsletters.
The UN Convention has been ratified by most European countries and by the European Union itself. Gradually more and more people know these documents and what it is about. Every recent text on disability policy refers to it. Do you think we, Europeans with a disability, will be starting to feel some positive effect of the UN Convention soon?
I really hope so! I really hope so because it seems like most people in power haven’t read it. And as somebody at the colloquium yesterday jokingly remarked, ‘they didn’t know what they signed’ and it’s up to us now. It might be our luck, it was our luck that they didn’t know what they were getting into. Now its up to us to sharpen our instruments and put them under squeeze and try to enforce the instrument by using the law.
We have to be getting much better in using the law and legal instruments. And just to mention an example in Sweden right now we are applying for funds for building up a law centre for that purpose. We, as the private sector, the civil society sector, especially around disability, we have to have our own legal top expertise to use all these instruments that we are getting now, that we have been getting from, among others, the UN Convention.
The effects of the current crisis are hitting people with disability even more than other European citizens. There are extreme cuts and austerity measures on public expenditure in many European countries. Personal budgets and community based services are often targeted first, how can this be explained?
If I look at the history of all these services and if you look at our short history, we’ve always been like David against the big Goliath. We are not in the same league. The lobby of the traditional service providers is just tremendous, as I said before, the big institutions have had a direct way to the government, which we haven’t. Only once I’ve seen somebody with a disability as Minister of Social Affairs. That was in Sweden, Mr. Bengt Lindquist who is blind, but this is an exception. So we have never had this kind of leverage and lobby facilities.
When we go to the European parliament I remember, it’s normally embarrassing to be met by politicians there, I remember how the speaker of the parliament kissed Bente Skansgård, our then female ENIL chairperson, on the cheek. I was reflecting, would he do this with a representative of the European Farmers, Fishermen or Miners? How can they behave like this? So, we are not taken serious.
How is the situation in Sweden with the austerities and things going round, Sweden traditionally being a role model for Europe on disability policy in several ways?
Well in Sweden due to some circumstances the crisis has had relatively little effect compared to some other countries. Sweden has suffered very little from the economic crisis. Only now you can see the economy decline a little bit, next year will be worse, but nowhere near as some countries on the continent experience.
But the crisis doesn’t help us of course in the field of policy in disability. The personal assistant legislation, for example, is increasingly interpreted in a restrictive way, so soon there’ll be hardly anything left when it comes to our autonomy. It’s not expanding anymore as it used to in terms of the number of people eligible for the direct payments, because politicians have been letting the courts make decisions against us. We are requiring a respecification of the law that would prohibit these interpretations in the courts and politicians have said ‘it’s a very complicated process, lets just study it’ and they have been studying and studying and we’ve been demanding legislative changes and we haven’t been able to achieve them yet.
And is it that they are more severe in the assessment of assistance?
That’s the way they do it. Do you think or fear that the independent living movement, that everything we have been fighting for will be swept away now in a couple of years or do you think we will grow stronger as a movement just because of the crisis? Which way will it go?
If one is optimistic, one can say that the crisis will remind each of us there is no way of feeling comfortable, if the ocean around you is rising up. So even in Sweden we cannot feel safe just because we are a little further up north than you guys. Also, on the optimistic note you could say the crisis should make people even more economy minded and saying we don’t have money to waste on institutions anymore, because it can be shown that community based services are cheaper and provide better quality. We’ve got all the arguments; we’ve got all the cards, we just have to play them.
Just to finish the interview Adolf do you have something to say especially to our younger readers with disability, a message for the youth?
Well, the question is always going to be ‘what are you going to do with your life?’ Who do you think is control of your life, is it your parents, the social worker at the institution, the civil servant or is it yourself? Then, if things turn out bad who is going to suffer: they or you? Ultimately its us and if we don’t see that we can make a change in our lives, who else is going to make the change?
So the first thing we have to learn is that each of us can make a difference in our lives. It’s very difficult to do it by yourself. So try to have friends in similar situations, together we can achieve a lot more than each of you by yourself. That’s why we have the movement. There are people who have been working longer on this than you maybe. Maybe some things you can learn from them and maybe some things you can teach them. We all can learn a little bit more. That’s what the movement is for; it’s a self help movement, a traditional self help movement. It helps you understand that you’re not by yourself with your problems. It’s not your fault, there’s nothing wrong with you, if things don’t work out for you. It’s a problem for the whole society, the way things are built. If I cannot cross the street in Brussels, is it my fault or is it the city administration’s fault? Obviously its not my fault, I didn’t build these streets that way. I would have built them differently. So there’s a lot out there for you to do. You’ve got a mission in life. You just have to see it. There’s a lot of meaning out there, you just have to see it. So don’t worry about not having anything to do, there’s lots for you to do.
Thank you very much Adolf.