When school starts again in Bavaria next Tuesday, Isabella will be in the second grade. She hasn’t been in a classroom once since she started school. Isabella has a very rare lung condition, she cannot breathe without supplemental oxygen. That’s why the seven-year-old is on a ventilator around the clock. With each breath, oxygen flows through a tube and enters your lungs through a port in your neck. Otherwise, the lively girl from Karlsfeld is fit. She likes to exercise, read, write and do arithmetic – and wants nothing more than to be able to go to school.
Isabella has officially been a student at the primary school in Karlsfeld since last school year, but she cannot go to class because she has no school companion. School companions support children and young people with mental or physical disabilities in their everyday school life. In Isabella’s case, this has to be an intensive care nurse who can constantly monitor her oxygen supply and react quickly in an emergency. “With the shortage of nurses that we’ve had for years, I think I’m more likely to win the lottery than a qualified nurse who is willing to accompany Isabella to school,” says Kristina P., the seven-year-old’s mother.
Currently, the parents take care of the child alone
The family from Karlsfeld has been looking for a nurse who is familiar with the ventilation of children for years, but cannot find one. She also needs support at home, because the parents are currently taking care of the child on their own. “There is always one of us at Isabella,” says Fritz P., “We only do the service of six and a half full-time caregivers in pairs.” In such cases, the health insurance companies are actually responsible for providing care. You have to find and confront the nursing staff. “They also make an effort, but cannot because there are hardly any staff to be placed,” says Fritz P.
Even more important than a relief for the parents, however, is that Isabella can finally go to school. Until a suitable school companion is found, Fritz P. wants to accompany his daughter to school lessons himself – but the Dachau school authority and the Bavarian Ministry of Education reject this. The reason: School companions should not be parents or relatives of the student.
School represents a space in which children can develop their personality and independence independently of their parents. The school authority and the Ministry of Education cite data protection concerns and the personal rights of classmates, which are endangered by the presence of a parent, as further reasons. “Of course, that’s totally understandable in a normal case,” says Fritz P., who also doesn’t want to and can’t accompany his daughter to school permanently. But in Isabella’s case, it is an emergency solution, without which she is currently unable to take part in face-to-face classes.
The family sued the court
One day before the start of the last school year, the P. family received the message from the Ministry of Education that Isabella was exceptionally allowed to go to school with her father for a week, but not after that. The family did not accept the offer. “How should I have explained that to the child?” asks Fritz P., “I can’t let her sniff it out for a few days with her expectations and hope of being able to go to school and then tell her that she’s going to get over it not allowed anymore.” The seven-year-old was worn down by the waiting and the uncertainty, says Kristina P. “I think that with this whole thing people forget that you’re doing it with a little person.”
The family from Karlsfeld went to court. After a first failed lawsuit, the Bavarian Administrative Court ruled that the recommendation on the use of school attendants in justified individual cases allows for exceptions that Isabella may be accompanied to school by her father until a suitable nurse is found. However, the court limited the approval to the 2021/2022 school year.
This has been over for almost six weeks, but Isabella was not able to attend the face-to-face lessons of her first class on any school day. According to Fritz P., the pandemic situation at the time was too risky for the daughter with lung disease. He had no choice but to have Isabella on sick leave and released from face-to-face classes.
Six hours of home schooling instead of 16 to 23 hours per week in attendance
Instead, Isabella received home schooling six hours a week from the second half of the school year. “That’s far too little,” says the father. “If she hadn’t been able to read and write before, I don’t see how she could have done it in just two classes three days a week.” Isabella’s classmates and all other first graders in Bavaria are taught 16 to 23 hours a week. The father also explains that his daughter only gets home schooling while she is on sick leave. A doctor must continuously confirm that she cannot attend face-to-face classes due to the current pandemic situation.
Fritz P. would like alternative solutions: “There must be a way to train with a reasonable number of hours per week for students who are not acutely ill but are still unable to take part in face-to-face classes” – for example because there is no school support. At the request of the SZ, the Dachau school authority later announced that the laws of the Bavarian school regulations, which were changed for the 2022/2023 school year, will allow pupils like Isabella to take part in their class in full via video transmission – insofar as this is supported by the respective teacher and the technical requirements for this exist.
Parents want social contacts and inclusion for Isabella
Most of all, however, the parents wish that Isabella doesn’t always have to be taught at home. The seven-year-old is alone a lot and has no friends. She keeps herself busy most of the day. She reads, draws and does a lot of crafts. The walls in the house are brightly painted, greeting cards that Isabella made for her parents hang everywhere. School inclusion is also particularly important for children like Isabella because they lack social contacts. “You need a lot of time to create acceptance. People look at you on the playground and don’t talk to you. You’re not allowed to play anyway,” says Fritz P., explaining that his daughter needs a constant group like a school class to make contacts more easily being able to connect with peers.
The shortage of nursing staff makes it difficult to find suitable school companions
In order to be able to go to school, Isabella still needs a nurse to accompany her at school. The family keeps looking, but the hope of finding one is almost gone, says Fritz P. and says: “If there is already so much demand with too few nursing staff, then the outpatient nursing services don’t take the most dangerous and stressful cases. ” Because Isabella is mobile, very active. She wants to move, dance and laugh. However, the oxygen supply can quickly be interrupted. “You have to be careful like a lynx,” says Kristina P.. So far, no suitable nurse has wanted to take on the responsibility.
For this reason, court proceedings are currently under way to determine whether Isabella can be accompanied by her father to face-to-face classes in the coming school year. “We have exhausted our options for action,” says Fritz P. “If the court decides negatively, then we simply won’t have a school in the second grade either.” The decision will not be available when school starts next Tuesday. This means that Isabella will not be able to put on her long packed school bag and go to school this time either.
Caregivers interested in helping the family can email [email protected] turn around.