In Germany, no person with a disability should be excluded, at least on paper. But as soon as things get difficult, the right to equality begins to falter. “Inclusion” is suddenly just a phrase, as the case of little Linus shows.
Linus Matilainen is seven years old. He lives in a small town in Baden-Württemberg, close to the border with Switzerland. Linus is severely disabled due to a genetic illness.
His parents do everything possible to ensure that he has a good life – as far as possible. They give him care and love, organize care and medical care. They make sure that he grows up with other children and enjoys a bit of normality.
Every moment they make Linus feel that he is a full member of our society, without any ifs or buts. In this effort, they can rely on an assurance from the highest authorities: “No one may be disadvantaged because of their disability.” This is what it says in Article 3 of the Basic Law.
But what is a fundamental right worth if people can simply ignore it without their behavior having any consequences?
How credible are the assurances of high politics that in an “inclusive society” all people would be treated equally – “regardless of their physical or mental condition”?
The case of Linus shows in a strange way: “Inclusion” is sometimes an empty promise in Germany, a phrase that is often used in Sunday speeches but is all too often trampled on in reality.
“Participation”, “equal opportunities”, “equal treatment” – when Linus’ parents hear such slogans, they wave them away in disappointment.
Reason: After five and a half years without complications, Linus was kicked out of his kindergarten. In November 2023, the management of the house terminated the care contract. An attempt was also made to “isolate” the impaired boy from his group and move him to a separate room in the crèche area.
The case of little Linus is moving. Have you already had similar experiences as parents? Would you like to tell us your story? Then contact me at mein-bericht@focus.de.
In a justifying letter, the parents were informed that the resources within the facility had been “exhausted” and that the “limits of inclusion had been reached and in some cases already exceeded”.
In plain language: those responsible at the daycare felt overwhelmed by looking after the boy. Linus, it has to be said clearly, was a burden that they were no longer willing to shoulder.
“It hurts. We are deeply hurt,” says Linus’ mother Julia Matilainen in an interview with FOCUS online. For a long time the family did not experience any discrimination. “Now we had to experience for the first time that Linus was declared a problem child who was not wanted.”
The kindergarten is a facility for parents who work for a world-famous pharmaceutical company with headquarters in Switzerland and subsidiaries in Germany. A kind of “company kindergarten”. Linus’ parents are also employed by the company.
In the modern flagship daycare center “ideenReich”, girls and boys are cared for in groups that have illustrious names such as “Meadow Children”, “Flusskinder” or “Blumenkinder”. Linus was last with the “Beerenkinder”.
On its homepage, the daycare center presents itself in a warm, positive light. The children “come here happy and go home happy again,” it says in an image film. Linus can also be seen, sitting at the table and playing with his friends.
That’s over now. To the parents’ horror. Unfortunately for Linus.
“When he went to kindergarten in the morning, he started to shine. The other children came up to him,” says his mother. Now Linus has to be looked after by nursing staff at home and, apart from his nine-year-old sister, has almost no contact with children.
“You can tell how much he misses that. You can feel that he is wondering: Hey, where are the others? Where are the children?” It’s the same the other way around. “Some children burst into tears when they heard that Linus was no longer there.”
Linus lives with the very rare genetic disease PCH2a (pontocerebellar hypoplasia type 2a), which was diagnosed two months after his birth in June 2017.
The boy’s development is severely impaired. He cannot speak and has very limited movement. Linus recognizes familiar people, understands simple questions and can react through physical signals, such as smiling approvingly. He needs intensive care and has to take medication.
The little one’s impairments initially did not pose a problem for the daycare center. In spring 2018, shortly after his first birthday, Linus was accepted into the “River Children” daycare group and looked after by regular educators and interns.
In 2021 he will switch to the larger “berry children”. Because Linus needs more attention than his friends, he is given an “inclusion force” to help him. Helga, that’s his caregiver’s name, works at the daycare center four days a week and takes loving care of the boy. Your position is co-financed by the district office.
When Helga retires in the summer of 2023, a special education nurse will take over the care.
The boy’s parents support the daycare staff as best they can. Mother Julia, a trained pharmacist who now works in the field of cell and gene therapy, gives the “Beerenkinder” team special training. She explains in detail what medication Linus needs, what is important when it comes to care and how to react in emergencies, such as an epileptic seizure.
In August 2023, while on vacation in Finland, the homeland of his father Ville Matilainen, Linus contracts pneumonia. The aftereffects are still noticeable in Germany. His parents often have to pick him up early from kindergarten because he is restless and still has a fever.
Two months later, in October 2023, the daycare management asks Linus’ parents for an interview. It is made clear to them unequivocally: the boy represents a serious problem. They are overwhelmed and no longer able to take sufficient care of him.
The parents, always trying to find constructive solutions, react immediately. So they offer that the nursing staff, who have so far only looked after Linus at home, also come to the kindergarten and relieve the burden on the staff. They are also asking the district office to increase financial support for the “inclusion force” to 30 hours per week.
Although the application is approved, tensions between the daycare center and the Matilainen family do not subside.
There will be a scandal in November 2023. During a crisis summit, the kindergarten management reveals to the parents their decision that Linus has to leave the kindergarten. Two days later, written termination will be given on February 29, 2024.
The parents find the action against them and their impaired child scandalous. They defend themselves.
With the strong support of the parents’ council and pressure from parents, a compromise is reached. It stipulates that Linus can continue to attend kindergarten if 1:1 care is guaranteed by specialist staff, which the parents organize themselves. The daycare center then takes back the termination.
Julia and Ville Matilainen find qualified nursing staff and ensure that Linus’ care is guaranteed from the beginning of February 2024. Everything seems to be turning out well. But things turn out differently.
The daycare management decides on its own that Linus will be torn away from his beloved “Berry Children” group. Instead, the little one is sent to a separate room with a bed in the crèche area.
When Linus and the nursing staff come to the daycare on the first day, they find out from the house management that Linus’ things have already been removed from the group and put in the single room. It is said that the children had already celebrated farewell to their comrade and eaten cake.
“All of this took place without Linus,” reports 43-year-old Julia Matilainen in an interview with FOCUS online. Even weeks after the incident, you can see her disappointment, bitterness, and even anger.
The parents feel ignored. There isn’t much left of Linus’ usual everyday life in a group. “Eating meals together in the daycare area was not possible due to space and time constraints,” says the mother. “The educators largely ignored Linus and his carers.”
That afternoon, the parents make a last desperate attempt to bring Linus back into his usual surroundings. In an email to the daycare center management, they asked to be transferred back to the “Berry Children”. But the decision-makers remain tough.
Linus hasn’t gone to kindergarten since mid-February. His parents took him out of the facility with a heavy heart, also to prevent the conflict with management from escalating any further. The boy is now being cared for around the clock at home.
Apart from the fact that the situation represents a heavy burden in everyday life for the entire family, there is one thing the parents absolutely do not understand:
“In Germany we constantly talk about inclusion and integration, but when it comes down to it, people are left alone with their worries. “It’s shameful,” said Julia Matilainen.
Successful inclusion obviously depends on individual people who commit themselves unreservedly, like Linus’ first “inclusion force” Helga. After they left daycare, things “went downhill,” reports the mother.
The reactions of the responsible authorities were also sobering. In response to the parents’ complaint about Linus’ expulsion, Simone Fischer, the disability representative for the state of Baden-Württemberg, explains that she “doesn’t understand” the daycare center’s actions. Concrete help – none!
Other government agencies that officially campaign against discrimination and unequal treatment are also holding back. Often their “help” consists of advising parents to take legal action against the kindergarten and sue for Linus’ place. However, a lawyer strongly advises against this. Such a procedure takes a very long time, is expensive and costs a lot of nerves.
The Matilainens are left clueless and helpless. They know the basic law behind them and can rely on common sense and the assessments of experts. But it’s of no use to them.
“Linus has a friendly and contented nature and interacts well with other people, especially with familiar children of the same age in kindergarten,” says neurologist Wibke Janzarik. The doctor at Freiburg University Hospital has known the boy since he was nine months old.
In a statement about the daycare center’s behavior, she writes that Linus is comparatively stable and well adjusted to medication. “There are no medical concerns about Linus remaining in the kindergarten environment he is familiar with, especially since additional support has now been organized.”
With emphatic words, the doctor reminds the daycare supervisors of their legal and moral duty: “A child who grows up in Germany has a right to inclusion. To put it simply: Inclusion is when everyone is allowed to participate.” The following is the note: “Inclusion does not mean ‘safety’ and certainly not ‘segregation’.”
Linus has known the children of the same age in his group for several years. “This connection is experienced as an enrichment by both sides. It’s not just Linus who benefits from this exchange – the healthy children from his kindergarten group have also learned through contact with Linus what inclusion and participation means for the rest of their lives,” said the doctor in her statement.
The facility’s plans to take Linus out of his familiar group and look after him in a separate room “destroys all the inclusion that has been exemplary in the kindergarten in recent years,” said the doctor.
“Linus is not an object that can be moved from one room to another where it doesn’t get in the way. “This is about an attentive, friendly and socially interested boy who is suddenly punished for his disability in a completely incomprehensible way,” criticizes neurologist Janzarik. The isolation of Linus from his familiar environment is “unjustifiable” from a medical perspective.
The kindergarten management is not deterred by such criticism.
In a letter to the “dear Matilainen family” it is said that the “inclusive care of Linus” had been mastered well by the summer of 2023. But then the situation “changed”. The number of his cramps increased, he screamed more often and had to be “isolated” from the other children more and more often. In addition, “emergency situations” occurred several times.
After the termination was withdrawn at the insistence of his parents, new forms of care for Linus were considered. Result: The boy gets his “own quiet room” in the daycare center, where he can be cared for individually by the nursing staff. The daycare managers emphasize that this is only happening “for the benefit” of Linus. “We definitely don’t want to discriminate or exclude him.”
To support their position, the daycare center leaders explain: “Apart from his height and age, from our point of view Linus is more at the same level of development as the children in the daycare center.” The care situation and the associated effort in everyday life are also “comparable to that of children in a day care center”.
The parents perceive these words as hammer blows. “If you follow the logic of the kindergarten, you could dissolve all the support and care groups in workshops for adults with disabilities and move the people working there, most of them severely disabled, to the daycare,” complains Julia Matilainen.
The statement from the daycare center management shows “that the facility does not understand basic concepts of inclusion and is actively discriminating against Linus.”
The mother told FOCUS online: “We understand that looking after a child with severe multiple disabilities is a challenge and recognize that this has worked very well for many years.” But the kindergarten’s decision to no longer look after Linus or Sending her to a separate single room was “unacceptable”.
In fact, the question arises as to what the daycare center management means by their assessment that in Linus’ case the boundaries of inclusion were partially “exceeded”. What limits? Who defines these boundaries? Do such limits even exist? In any case, there is nothing about this in legal texts and political inclusion papers.
“We are very disappointed and horrified by the way the kindergarten and educational management treated Linus,” said the mother. The painful chapter is over for her personally, because Linus will be attending school from September anyway.
But she knows that other parents of children with disabilities have similar problems. “We want to point out the shortcomings in inclusion and ensure that such a case does not happen again.”
Linus’ parents lost their fight against the kindergarten. But did the kindergarten win? Hardly likely.
Those responsible will have to live permanently with the accusation of having excluded one of their children and thus violating the principle of lived inclusion.
This is exactly what a former employee made clear to them in emotional words. We’re talking about Helga, who lovingly looked after Linus as an “inclusion worker” in the kindergarten until she retired.
At the end of 2023, Helga first thanked everyone for the invitation to the daycare Christmas party, which she was “so looking forward to”. “Now I’ve found out that you’re kicking Linus out. I am very sad and angry about this. I can’t come to the Christmas party like this.”
The former employee asks: “How can you be responsible to your conscience for letting Linus and his family down like that?” She reminds us that Linus has always had difficult days, but always also good ones – “like others Children too.”
Of course, at the time she was also “afraid” that Linus would have an epileptic seizure. “But it wouldn’t have occurred to me to say that it’s no longer possible.” An emergency can also arise with other children, says Helga. “Are you throwing them out too?”
The daycare team should think about the damage to the image of the facility and the Dieter Kaltenbach Foundation behind it. “And what it triggers in the other parents when they notice how Linus is being discriminated against.”
Finally, she points out to her former superiors that the right to inclusion is enshrined in the UN Convention on the Rights of Persons with Disabilities. “In my view, you are violating this. Because every person has the right to be there.”
The “ideenReich” kindergarten protests its innocence to FOCUS online. The accusation of discrimination and violation of fundamental rights is “decisively rejected,” said Iris Teulière, managing director of the Dieter Kaltenbach Foundation, which runs the daycare center.
She can assure that the foundation and all members of the daycare team “do their best for every single child every day.”
This no longer applies to Linus.
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