Thomas Bannasch has been the managing director of the Bavarian State Self-Help Working Group (LAG) for seven years. This is the umbrella organization of more than 100 self-help associations for disabled and chronically ill people active throughout Bavaria. Its seat is in Munich. About 9.4 percent of people in Germany live with a disability. In Munich it is more than ten percent. The numbers are increasing, according to Bannasch, reasons for this include increasing age and higher chances of survival due to better medical care. The 50-year-old is in a wheelchair because of a congenital muscle disease. He has a son and works full time. “I’m a person who doesn’t really fit any law,” he says of himself.
SZ: Mr. Bannasch, there are many barriers in the life of a wheelchair user. What are you particularly struggling with?
Thomas Bannasch: Quite spontaneously I would say: The bureaucracy is a big hurdle in my everyday life – and of course not only in mine.
Bureaucracy in trying to get support?
Yes, exactly, for example because you have to bill services through so many different payers. The different areas of life are packed into separate drawers: work, leisure, care. But life doesn’t work that separate. I can explain it to you by going to the cinema with an assistant.
A leisure activity?
Actually yes, that’s what the so-called integration aid pays for. But if you have to go to the toilet in the cinema, then that is a care service that is either covered by the care insurance or billed via social welfare. If the whole thing takes place as part of a company outing, then another cost bearer comes on board. And it can then happen that the various payers discuss how long it took you to use the toilet.
That sounds absurd and complicated. Why isn’t that changing?
As part of the Federal Participation Act (BTHG), which came into force in July 2017 and is based on the specifications of the UN Disability Rights Convention (UN-BRK), the districts are now obliged to finally develop a corresponding needs assessment tool. We as a LAG are involved in this.
The needs are certainly very different depending on the disability and the place of residence?
Yes, because someone who lives in the country may need more transport services than someone in the city who also uses public transport to get from A to B. For a long time, however, the same mobility aids were approved everywhere. Unfortunately, these demands have not yet been implemented; the various cost bearers are only required to work together better. We are now in the process of bringing this needs development tool to the outside very soon and hope that each individual can be supported in a more individual and needs-based manner in the future.
“I would like people with disabilities to take more personal responsibility,” says Thomas Bannasch.
(Photo: Florian Peljak)
Apart from the bureaucratic difficulties, how do you see the current infrastructure for people with disabilities?
In any case, you have to differentiate between town and country and between the districts in Bavaria. Upper Bavaria is relatively well positioned, for example in terms of outpatient care. In the city of Munich there are even completely different possibilities. There are many large institutions here, such as the Pfennigparade, the ICP Foundation, and the Lebenshilfe. However, those affected are viewed quite ambivalently.
Why?
There is a certain tradition in Bavaria. These facilities were set up here around the 1960s. They have filled large supply gaps. Because after the Second World War there was no structure for disabled people and no help for parents. In view of the brutalities during the Nazi dictatorship, they often simply locked their children away. The structures and trust first had to be established. The facilities were something special at the time and were considered innovative. But the world has changed. For a long time it has been much more about participation and self-determination, which is also what the 2006 UN Convention on the Rights of Persons with Disabilities envisages. In a large institution, however, a very, very large part of self-determination is lost.
Because the fixed structures leave people little freedom?
You are tied to the passage of time and have few opportunities to realize your own ideas. For example, I know of a resident of a facility who would like to learn how to ride a bike. But there is no one to teach her that individually. It would only be possible in a group course, but that doesn’t happen.
More individuality would mean more quality of life.
I advocate smaller living groups and more individualization. But I would also like people with disabilities to take more responsibility for themselves and, as far as possible, to take their own lives into their own hands. People who have been embedded in care structures since childhood often do not learn to act in a non-disabled society. They just know a life in which the doors in front of them open automatically.
What’s wrong with the doors opening?
Nothing if it were like that everywhere. But if you don’t know how to open a normal door, you will have problems in everyday life. This example can be applied to many other situations.
This is understandable using the example of a door, but what about stairs?
There are always barriers that a disabled person cannot overcome, and it would certainly be better if everyone was considered everywhere. But I’m concerned with something fundamental: disabled people have to learn to be independent. It is always amazing that young people are not taught in institutions, for example how to find helping staff, how to act as an employer, what you need to really live independently.
So all-round care isn’t always a good thing?
Disabled children and young people in particular often do not have the opportunity to learn all this because too much is being taken from them.
Is that also an appeal to parents?
You should definitely be aware of the impact this can have. Otherwise, a network of family and friends is very important.
What do you think of inclusion in mainstream schools and day-care centers?
A lot if done right. Of course you can’t close all special needs schools and send all children to mainstream schools. But I think it’s a pity that it’s increasingly being said that the inclusion project has failed. In fact, it’s never really been tried.
That’s a tough statement.
It’s a fact, because inclusion can hardly work in the current school system. Children with a migration background also have their problems. The classes are too big, many teachers are not properly trained, and there is a lack of teaching assistants. Basically, no German state government has seriously attempted a good implementation of the demand for inclusion. Par ordre du mufti it doesn’t work. That discredits the topic.
But learning together would ensure more mutual understanding.
No one needs to be included who has not been previously excluded. If an employer went to school with disabled children, then their understanding is much greater and their willingness to hire a disabled person is correspondingly greater.
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