“See you on Friday for German,” says the teacher in the online class as she says goodbye. Lukas Hernicht flinches. Friday is not German. The teacher made a mistake. When his older brother tells the story that afternoon in the family kitchen in Munich, he nods wildly in the direction of the refrigerator. His timetable is hanging there, proof: no German on Friday. His brother, father and mother know how to interpret such gestures. They understand him even though he can’t speak a word. Most other people don’t understand him. That’s his problem.
“My name is Lukas Hernicht and I’m 21 years old. I’ve had a severe physical disability since I was born. It’s called cerebral palsy,” begins a speech that Hernicht recently wrote and presented to politicians using his speech computer at an event organized by the disabled people’s support organization. His father took him there. The young man explained how the world remains closed to him because he understands almost everything but can hardly express himself without help.
Instead of words, only sounds come out of his mouth. And if he wants to talk about himself, as he did this afternoon, he has to use the back of his hand, which is bent backwards, to find the right letters on the speech computer. This is tedious and takes a long time, even with his mother guiding his hand. But his eyes light up when he’s done it. You quickly notice that he is a curious young man.
“Perhaps one of you has an idea how you can help me and other people who use AAC to live in the midst of it all.” This is how his lecture ended, which was actually an accusation. The politicians reacted with concern, says the father. Lukas himself doesn’t seem bitter that afternoon. He cheers when he can play the lyrics again. He enjoys things like that.
The parents also have to smile. They are desperate. Since their son finished special school, they have been looking for a place for him in the world where he can work or study and participate in the community. You have found an online school. There he can catch up on his secondary school leaving certificate with the help of assistants. That didn’t work at the special school. His brother and a retired primary school teacher support him. But a year after school started, they still don’t know whether they can finance this model.
Lukas Hernicht needs people to help him use his tablet. Just like he needs help getting dressed, brushing his teeth and eating. “I need assistance every day from 9 a.m. to 6 p.m.,” says his application to cover the costs, which the father submitted to the district of Upper Bavaria in June 2022. After that, they waited month after month. But the answer only came in December. The lessons had already been going on for three months.
The notice itself reads so complicated that you will certainly need more than the secondary school qualification that Hernicht is aiming for to understand it. The care allowance is reduced and offset against health insurance payments. To this end, Hernicht is allowed to hire carers for 7.73 hours a day, but not in the way the family has now organized themselves in their distress. He cannot account for the brother who interrupted his studies to help. Family doesn’t count. The father objected. So they are still waiting for a decision, now for 16 months.
When you visit their kitchen, the Hernichts seem like a family that sticks together and doesn’t let each other down easily. Her son Lukas was always there despite all the restrictions, says the mother: When they went sledding, they pulled him up the mountain. Somehow it worked. But the last year has worn her down: the uncertainty, the waiting and this feeling of not being heard by the authorities.
According to the UN Convention on the Rights of Persons with Disabilities, all people have the right to participate in community life – regardless of their limitations. You may, among other things, enlist the help of assistants. However, exercising this right is difficult if the authorities do not allocate the necessary money. This happens more often in Upper Bavaria, say those affected and helpers.
The dispute over a transport service worth 46.30 euros kept the courts busy for six years
“Those affected waited a catastrophically long time for their decisions,” reports Konstanze Riedmüller, who is responsible, among other things, for advising physically disabled people at the Pfennigparade Foundation. When asked, the district of Upper Bavaria itself admits that the processing times in the case of the Hernicht family were too long. “We regret it very much,” says a spokeswoman. She cites staff shortages as the reason for the delay.
District Councilor Klaus Weber knows the authority’s personnel shortage. The administration could still be faster if it didn’t keep demanding new evidence from people. “There is a lot of mistrust towards disabled people, that they could cheat.”
At the end of September, the left-wing politician invited a group of those affected to the Munich town hall. Topic: “Disability policy in Upper Bavaria: Inclusion failed – democracy buried.” There you meet a wheelchair user who was arguing with the district about whether he would get the money reimbursed for visiting his mother. The district found that visiting family is not part of social participation. Another wheelchair user reports that the district denied him a ride of 46.30 euros that was necessary to take his car to the workshop. This case kept the courts busy for six years.
A new procedure could soon be added. Harald Hernicht has threatened the district with a lawsuit for failure to act. He is a judge and therefore part of the system, says the father. In the last year, however, his faith in this state has been severely shaken. It was the year his son finished special school. And in which they asked for many facilities and yet could not find a good place for him. He has too many physical limitations for the workshops for the disabled. The support centers in which people with severe physical and mental disabilities are looked after and cared for are suffering from a lack of staff and are hopelessly fully booked. His parents believe that Lukas Hernicht would have been terribly bored there.
The online school he now attends is its own creative stopgap. It could be a good one: Lukas Hernicht is being challenged academically for the first time in his life. Instead of going through the squirrel every year like he did in special school, he now reads “The Wave” and calculates quadratic functions. His eyes flash proudly when his mother talks about it. The district of Upper Bavaria could also be satisfied, after all it saves money when disabled people organize their lives themselves instead of going to a home. Online lessons have been running for more than a year now. But the Hernicht family still doesn’t know how much money they can actually spend on it.