To live a self-determined life - The story of a young man with disabilities from Austria

Preconditions for de-institutionialization in Austria. Jochen Baumschlager’s move from a 500 bed institution to a life in freedom. Lyssna-MP3-svensk (30:56 minuter, 29 MB), Lyssna-MP3-deutsch (28:49 minuter, 27 MB). Internet publication URLs: www.independentliving.org/radio/jochen-baumschlager.mp3, www.independentliving.org/radio/jochen-baumschlager-de.mp3, www.independentliving.org/radio/jochen-baumschlager-sv.html, www.independentliving.org/radio/jochen-baumschlager-en.html, www.independentliving.org/radio/jochen-baumschlager-de.html

På svenska | Auf Deutsch

Programme editor: Peter Rudlof
Editorial assistance: Wolfgang Mizelli
Presented by: Doris Rudlof-Garreis
Music: Martin Moro and Hannes Urdl
Translation: Anna Hadler

Music: “Circles" (Martin Moro)

Jochen: Well, I have been living in my own flat for two years and the living conditions have improved quite a lot because now I am in the position to lead an independent life.

Narrator: Independent Living

I can meet friends in private whenever and wherever I want without any restrictions...

Narrator: The story of a young man with disabilities from Austria

...whatsoever because there is a round-the-clock assistant team; support is on a one-to-one basis which has considerably increased my personal freedom.

Christian: Hats off to your courage, I think I wouldn’t have had the guts to do that...

Narrator: Christian Pani, a friend of Jochen’s

…because pretty much had been at stake, will things go off smoothly or not? As to Jochen’s descriptions there had only been one way to find out - to give it a try and he went for it and he has succeeded so far.

Brother: That was something entirely new to us.

Narrator: Franz Farkas, Jochen’s brother

…and this is why it made me even happier afterwards; that it had worked out so well and that for him everything has exactly turned out the way he then had hoped for, yeah?

Civil servant: Well, it all started with me being contacted.

Narrator: Dr. Gerald Schwann, retired senior civil servant

Civil servant: Whether or not and to what extent Jochen Baumschlager could be supported in his very special situation - it quickly became quite clear that the current legislative possibilities did not allow adequate support.

Narrator: In Austria people with disabilities cannot take it for granted to live a self-determined life, to have a flat of their own and to get the assistance needed for their daily routines. There is, however, a care allowance that is irrespective of any other income. It is a lump sum that does not compensate at all for the necessary assistants’ expenses. It is not enough to really be able to lead a self-determined life. This is why in Austria most of the adults who are highly dependent on others, either live at home with their families or in large homes that are publicly financed on a daily-rate basis.

Jochen: I do need round-the-clock support because I am not able to do certain things on my own due to my affected muscles, e.g. physical work. I need somebody in the morning to help me get out of the bed, to do my daily routines, to get dressed - once I am sitting in the wheel chair I am relatively mobile at first sight because this is an electronic wheel chair which is easy to handle. However, as I have already mentioned, I need somebody with the meals and drinking. Even if I want to boot up the computer I have to ask my assistant to do that for me - well, asking is not the right word for that - I have to assign it to him. And this is going on and on - it’s the same thing in the evening when I want to go to bed, being lifted out of the bed, lifted into the bed, even during the night I need help because I have to be turned around - I cannot rest on the same side all night long -  here you are, 24 hours have gone.

Narrator: In Austria about 330 000 people draw a care allowance and Jochen Baumschlager is one of them. The respective amount depends on how much support is needed. There are seven grades. Grade one means that a person with disabilities does not need more than 50 assistance hours a month and is entitled to get a monthly care allowance of € 145,--. In order to be eligible for grade seven, at least 180 assistance hours a month are required. Here the care allowance amounts to € 1500,-- a month. Jochen Baumschlager is graded highest according to the extent of his support need. Due to the fact that he needs round-the-clock support, the care allowance does not cover all expenses. Nonetheless, he managed to break out of a home career which was supposed to be his predestinated way of life and to be able to live a self-determined life.

Jochen: I have lived in a large home for disabled people for 19 years. First I was at the boarding school and then I worked for eight years. After that I lived in a shared flat with other people with disabilities. I am severely disabled and therefore need of lot of physical support now. It was rather difficult, the staff wasn’t always able to provide adequate support due to lack of staff or sick leave and so forth. I have always been dependent on somebody to get me to places, sometimes people didn’t even have a driver’s licence which was another restriction. It is true that most of the time the community service people have been here to get us somewhere by bus … but it was not possible to do something spontaneously, everything had to be planned in advance.

Christian: We always used to ask Jochen whether or not he had time to get something done. Nowadays it is different. It all depends on him whether or not he would like to do something. Now it’s his own choice and not somebody else’s. Whenever I visit him I feel another atmosphere, it is much more private now, unlike at the home where he used to live. This was not a place where he felt at home, he just lived there and now I am going to see him within his own four walls - at his very home; and that is what makes the difference - a private atmosphere. I have another friend in this home and I can really feel the difference between Jochen and him if we want to arrange something. He can’t do things he likes, but if Jochen wants to do something he is no longer dependent on other people because there is round-the-clock support.

Brother: His current living condition is such that I have the feeling that he is completely independent in his decisions which he plans at short notice. I think this is particularly great if he wants to arrange something within a short time. He no longer needs to worry about the home’s schedule or who could possibly help him to get somewhere. As a matter of fact, I would say that his life can almost be compared - under certain conditions -with that of a non-disabled person. He has become mobile - at least he is no longer restricted in this respect.

Jochen: Compared to the situation in the home, a particularly big improvement has been that now I am in the fortunate position of being able to invite people privately. I don’t have the feeling of being watched in this way or another or being confronted with questions about the people who are going to visit me. When women used to visit me at the home for people with disabilities there was always an uproar about them - who is this and that, why me and so on. This is something very special and is part of my privacy and I do not want to talk about this with everybody. Now these questions have gone since I can invite anybody I like without having to answer any unpleasant questions.

Music: “Five Steps" (Hannes Urdl)

Jochen: As early as at the age of 20 I already wanted to move out of the home and to live in a flat of my own. Yet, somehow I didn’t feel as if I had to move out instantly. This feeling, however, changed, sometimes for the better, sometimes for the worse. Thus, occasionally I felt quite at ease and then I couldn’t really cope well with the situation. After I returned from my US trip in 2000, I knew what it was like to live on one’s own and from this time on I realised I had to get out of the home. After that I pulled out all the stops to move out. Given the risks I have taken I’d say that it was a calculated risk because there were always some people who were there to help me if need be.

Christian: Jochen can consider himself very lucky that his brother has always supported him and that Jochen has also stuck to his plans or else it wouldn’t have worked out so well. I can imagine that the authorities can easily get out of it by clinging to the disability law and that there is no alternative to it since there are large institutions that offer these services and there is no need to have anything altered. But these people do not know what it is like to live in a home - this is my opinion and I think I am right.

Brother: The biggest obstacles to overcome had been - well, it’ s the same old story - to raise the money required for his current living conditions. The preparatory work took about one and a half years in order to get in touch with the authorities and other parties involved to safeguard the financial support we needed to realise our plans, didn’t we?

Civil servant: As far as I can remember, and I must admit that I do not recall in detail, careful thought had been given to the costs of the home, which was not necessarily the best thing for Jochen Baumschlager, and an alternative solution that at least didn’t exceed the home expenses. Well, if my memory serves me right, we found a solution outside the home where we could take over the care expenses, the total sum of which was less than the expenses for the home. The only problem was to cover it within the present disability law.

Jochen: The fact that driving was less expensive was supposed to be a tactical trick of ours to offer another incentive. Though I did have the impression that most of the responsible officials saw that after 20 years residence in a home a change could be deemed advisable.

Civil cervant: There were different opinions even within the same official, so to speak. On the one hand, we had known for quite a while that other forms of services need to be installed - this had come to light time and again - and, on the other hand, the existing law did not allow any alternatives. People were aware of both the necessity to make some changes and the fact that the possibility - this was as clear as day - did not exist. That was why we had been drawing up various makeshift concepts to achieve some solutions in order to help the people with disabilities. At the same time, we knew very well that this was only an interim solution. The introduction of a new disability law is said to be the only way to achieve what we actually want to gain for the people with disabilities.

Narrator: Apart from Vienna, the current legal situation in Austria does not allow the daily rates for assistants’ expenses exceeding the care allowances to be directly paid to the person concerned. In Vienna direct payment is possible, though unfortunately, it is a lump sum that cannot cover the entire support need either. As far as Jochen Baumschlager is concerned, the assistants’ expenses are being covered via “Care for you," a society founded for this purpose.

Jochen: Right, we founded a society on my initiative which was then set up by my brother and some other people who advised us. The daily procedure is such that there are five assistants to support me. I am drawing up a monthly schedule in accordance with them because some of them are students and they have to go university as well. One guy, e.g., will work on Wednesday, Thursday and Friday and the rest of the week he is going to university. That is the reason why I am setting up the schedule one month in advance.

Narrator: Jochen Baumschlager draws up his schedules with his computer which again saves administrative expenses. He is also quite flexible regarding the qualifications of his assistant people.

Jochen: It is possible to spend less money because our society does not need expert staff but only assistants who are able to check things for me on the spot. These work chores are especially adapted to my situation, lifting etc - it all depends on me training these people according to my special needs. No expert staff is needed for this work.

Music: “Circles" (Martin Moro)

Jochen: We are handling things in such a way that the person concerned or the client - in this case the person with disabilities - can choose his assistants on his own because it is he who has to spend most of the time with this person and if they do not get along with each other it is a real problem. That’s why I can choose the staff - assistants in this case - on my own. Let’s do a quick comparison of the expenses -how it used to be and the
actual situation. The costs for the home amounted to €190,-- a day and now the authorities have to pay about € 150,-- a day. This is only possible because our society does some private fund raising in order to support our philosophy of a free and independent life. This is very important for us and all our efforts are heading in this direction.

Narrator: Jochen Baumschlager has to raise about 20% of the expenses needed for his self-determined life via private sources. Because he needs round-the-clock support, support need comes to more than 700 hours a month altogether. A smart and well-considered composite system that includes people who are either employed with the society or work on a free-lance basis has made it possible that on average one working hour does not cost more than about € 8,--. Consequently, Jochen Baumschlager can finance 180 assistants’ hours by the care allowance, about 380 hours are being paid by the society “Care for you" and the remaining 140 hours have to be funded honorarily or via private fund raising.

Music: “Circles" (Martin Moro)

Jochen: As a child I went to a public primary school in Upper Styria for the first four years. After that I spent one year in a secondary modern school. After this the situation deteriorated insofar as I was gradually losing my mobility and then I moved to Graz where I finished secondary modern school. Following that, one year of the vocational preparatory school - and I went through the rest of my school years within the framework of this school. After I had finished compulsory schooling I was offered a clerical job which I carried out for eight years. Then, due to the physical situation, I had to retire early.

Music: “Circles" (Martin Moro)

Jochen: What I like to do; well I … going to the pictures is a hobby of mine - I have already spent a lot of time in cinemas, I am also very keen on sports, or else I am also doing peer counselling in the society, which is a rather time-consuming task, too. Travelling used to be a great passion of mine but since I have already been travelling around pretty much I’ve slowed down a bit. There are so many other things I take an interest in. The internet is one of which I am very much interested in, though I am open to all other topics as well.

Christian: There are people who envy and emulate him, but they do not have the persistence, so to speak, and the background and the support Jochen has, and that may make life a bit harder. Also the authorities - unfortunately in this country it depends very much on the cooperation of the authorities - and Jochen pushed through his thing not on the basis of the current disability law but on the goodwill and collaboration of the authorities by means of special regulations and that’s the problem.

Civil servant: Right, as far I was concerned, the role I had to play was mostly that of a person who set up the necessary network among the people concerned. On the one hand, Jochen Baumschlager himself and, of course, the society where he had lived at that time and, on the other hand, the local administrative authorities in Liezen that had partly taken over the expenses. I tried to explore which ways might be open to us because I’d like to stress that I’ve had a great interest in finding a solution. Well, the local administrative authorities could be convinced in some discussions that they would be better off if they cooperated with us in this case - and you know, a financial impetus is always welcome and usually helps to find a successful solution. The only thing you have to bear in mind is the existing disability law because otherwise you may get into hot water. I had consciously put up with troubles in the past because there had been similar cases that were near to illegality and somebody nasty could have caused real trouble. In this case, we would have had to ask ourselves what we actually wanted to do, do we want to support the people with disabilities or do we rather strictly abide by the law? Here I am of the opinion that exactly this disability law has to be, and remain as something living and thus, I cannot execute it blindly according to the letter of the law but I am obliged to have a look at other possibilities which have not been thought of yet.

Christian: To me Jochen is a very strong person, a shining example as to his ability to assert himself. He really is a very persistent person as far as he himself is concerned and others as well. I wouldn’t take care so much for others - as he does. He is always on the ball to keep things going. Well, give him his due, that is a feather in his cap and he is also a guy whom you can absolutely count on 100% in every situation. As to keeping a secret to himself, regarding simply everything, he is a really good friend.

Jochen: I hope that I am an example. I have realised it in one specific case - a friend of mine who is still living in a large institution dearly wants to move out and we are now trying to launch another project via our society.

Brother: Right, I would say that basically nothing is impossible in the first place. It is recommended to accurately check peoples’ wishes and hopes..

Narrator: Franz Farkas, Jochen’s brother

…Don’t tell them beforehand that in Austria there is only one possibility or another and nothing else. It would be sensible to take other things into consideration as well.

 Civil servant: Retrospectively, I would reckon that this decision was probably dead right if Jochen Baumschlager is better off now than he used to be. I am extremely glad about that and I must say that this solution was justified, even if it was a unique decision.

Narrator: The financial structure Jochen Baumschlager requires to lead a self-determined life is made up of daily rates that are paid to the society “Care for you" by the province of Styria, the care allowance he draws and via private sources. Due to his own initiative, his courage and the readiness of the local authorities to support him, Jochen has taken on a kind of trailblazing role which still is a tightrope walk as far as the legal situation and the funding possibilities are concerned. However, this very role of his may contribute to the assistants’ expenses in Austria are being financed in the future on a legal basis and to market terms by a total sum of € 25,-- per hour.

Jochen: It’s better to be safe than sorry and I try to act with diplomacy, but generally I do get positive feedback from the people, I must confess.

Narrator: Independent Living

People, of course, need time to adapt and somehow some explanation is needed. As soon as they get to know something about people with disabilities they often change their opinions to the positive in a very short time.

Narrator: The story of a young man with disabilities from Austria

If money is at stake - I’ll put it this way - the assistants etc. is a subject matter that brings about expenses and if people do not exactly know about the situation they fear that they are being mislead. Word gets round that people with disabilities get so much public funding

Narrator: Programme editor: Peter Rudlof

And this is why I’d rather be careful about passing on information..

Narrator: Editorial assistance: Wolfgang Mizelli

…because, due to a lack of knowledge it often happens that information is interpreted incorrectly…

Narrator: Presented by: Doris Rudlof-Garreis

...which provokes exactly the contrary effect to that we had hoped for…

Narrator: Music: Hannes Urdl and Martin Moro

Jochen: For my part, I can say that I feel entirely free under the given circumstance. Itt’s simply a feeling of independence which I didn’t have before.

Music: “Circles" (Martin Moro)

 

Do you have comments on this or any of our other programs, or do you want suggest something we should report on? Please get in touch! E-mail or call Finn Hellman: finn.hellman@independentliving.org, tel. 08 506 22 193.

English