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The corona pandemic has pushed many people to their limits. But what about those who are always at the limit anyway? Families with disabled children, for example, are rarely on their radar. Your everyday life is fragile even without Corona. And out of joint for months.
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Karlsruhe – It hit you hard. The mother of 28-year-old Elisa is not only worried about the constant fear that her daughter, who has severely multiple disabilities, could become infected with Corona. Everyday life completely out of joint due to the workshop that has been closed for months and many unusual therapies has brought her and her family to despair and to the edge of complete exhaustion in the past few months. “We were no longer allowed to ride with Elisa, she lacked any structure, at some point she was no longer balanced and turned the day-night rhythm upside down,” says Petra Nicklas. “At some point we went completely on the stick.”
Nicklas, who is also chairman of the Ludwigsburg association “Together for people with physical and multiple disabilities”, reports on many parents who worry even more about their children and sink into isolation because of the failed therapies. “I’ve heard that auto-aggression has increased or that children are being hospitalized again,” she says. Many things – such as trunk control or mouth closure – require regular practice with therapists.
In pandemic times, this is not possible at all at times and the motor and also mental regression of those affected are accordingly. “Once the skill you have acquired is gone, it takes forever to get it back,” says Nicklas. Parents who were left alone with their handicapped children for weeks have now mirrored them, “I can no longer get things sorted out”.
The worries of these families who look after their children with disabilities or look after them on the weekends, even when they are adults, only have a few on their radar during Corona. “We tried to draw attention to this at the beginning of the pandemic,” said Lotte Habermann-Horstmeier, neurophysiologist and head of the Villingen Institute of Public Health. “The response was rather modest.”
Jutta Pagel-Steidl, managing director of the Baden-Württemberg state association for people with physical and multiple disabilities (LVKM-BW), complains about this. “I hear great concern from conversations with families who call and ask here,” she says. Similar to old people, people with disabilities are much more vulnerable to the virus and much more dependent on care than a so-called healthy person. “Some don’t go outside out of fear of infection, let alone for therapy. For others, the therapies are canceled and often the only way to get in contact with the outside world is no longer available. ”The result is loneliness and isolation of families and disabled people as a whole. “You are invisible,” said Habermann-Horstmeier.
“The greater the disability, the greater the impact of the corona restriction on those affected,” said Thorsten Langer, co-supervisor of a study at the Center for Pediatric and Adolescent Medicine at the Freiburg University Hospital. For this purpose, more than 1,600 parents of healthy and non-healthy children across Germany were surveyed in autumn 2020 in cooperation with the children’s network, the umbrella organization for patient representatives in the child and youth sector.
“The pandemic in no way affects everyone equally”
It also dealt with access to medical care: “A lot was left out,” reports Langer. Parents sometimes went to physiotherapy themselves to be shown exercises for their children at home. During the first wave, many offers for early intervention were simply closed and care services were limited. “We saw a clear upward curve in the burden from healthy to chronically ill and from there to complex, chronically ill children,” he sums up.
In addition, the mental stress of parents with disabled or chronically ill children is much higher, for example when the (special) schools are closed. “Because for these families, school is much more than just an educational tool: it means urgently needed relief for everyday life.”
Annette Mund, chairman of the children’s network, emphasizes: “What applies to healthy children and young people, especially when it comes to psychological stress, applies all the more to impaired children and young people.” Overall, one knows: “The younger the child, the more unfavorable this is for the entire development if therapy and support measures fail. ”The long-term consequences cannot yet be assessed.
“Elisa took the loss of external contacts a lot,” says Nicklas. “It has made their world significantly poorer and has resulted in their movement restlessness being significantly increased, seizures occurring more often, physical well-being significantly reduced.” From their point of view, the pandemic has made the situation of people who are completely dependent on support clear deteriorated and exposed the weaknesses of society.
“The pandemic does not affect everyone equally in any way. It hits sick children or families with sick or disabled children in particular, ”says Langer and looks with concern at the poor data situation. Because of their stress, people are often not in a position to pursue health and lobby policies. “There are too few studies for these families and not enough money for them.”
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