Need spiritual help

"The parents need help quickly"

Bärbel Kehl-Maurer is the CEO of Lebenshilfe Kirchheim. She knows families who provide care and medical care 24 hours a day - and have done so for weeks. From her own experience, she also knows the problems that people with disabilities have in hospitals.

In Germany we have excellent medical care. Does that actually apply to everyone?

Bärbel Kehl-Maurer: No, often not for people with disabilities. The demands that we are making at federal and state level have been the same for years, but nothing happens. We demand reliable communication with people with disabilities and their relatives, regular training and further education for doctors and nurses and, above all, assistance in hospitals.

Why is it so important?

Kehl-Maurer: Because a hospital stay for many people with intellectual disabilities can only work to a certain extent if a relative, usually the mother, can be accepted. But if the parents can no longer do so because they are too old, then there is often a lack of the very simple but important things. My brother is mentally and physically impaired and was hospitalized with a burn injury last year. The result was: my daughter drove the 24-hour nurse to the hospital to feed and wash my brother. Nobody in the clinic in Nürtingen could do that. As overloaded as the nursing staff is. An assistant could build trust, mediate between patient and nursing staff, be present during examinations. Because it is clear: We are all scared in the hospital, but if I don't understand what is happening, the stay can be traumatic.

And why does the implementation fail?

Of course it's the money. The rural district's integration aid should actually have to pay here, but, as is so often the case, there is no money for the weakest. This is now abundantly clear again in the pandemic: All people who do not have a strong lobby will be forgotten: children, families, the elderly, people with disabilities.

How are people with disabilities doing in the pandemic?

I have conversations with many relatives. Parents are unlikely to be afraid of the virus. If your child belongs to the high-risk group, they fear a fatal outcome. And that means: The families have been in quarantine voluntarily for weeks to protect the children. They even omit the necessary medical examinations and take care of all the care and medical care themselves.

What does this isolation mean?

For many people with intellectual disabilities, social contacts are very important. In the workshop, in the leisure groups, while shopping. Because they communicate holistically, with all their senses, they lack physical, close contact. Video calls are of no use to most people with intellectual disabilities.

And how are the parents?

You are completely alone in providing care and support, and that is a very heavy burden. Often, behavioral problems are exacerbated through isolation and dealing with one's own child becomes even more challenging. And the bad thing is: the families know that everything will go on for months. Because even if special schools and workshops open again, the parents will not send their high-risk children so easily. I wouldn't do that either. And that is once again particularly bitter for the women, the mothers. During this time, many have no support whatsoever and are also very afraid: In the worst case scenario, they will have to give up their work because they work 150 percent in nursing. Women are completely reduced to the role of mother and bear the brunt of the pandemic.

What can families do?

I would like to encourage parents to accept help, for example from the family relief service of Lebenshilfe Kirchheim. At that time, a student came to my son's house, he had Down's syndrome, and drew with him. I loved that time. There was just someone else in the house who was busy with my child and with whom he could talk. Incidentally, the costs for the care are partially or completely covered. In addition, all workshops and special needs schools offer emergency care that families should take advantage of, even if it is difficult for them.

Having to go to the doctor or hospital - that is not nice for anyone and is always associated with organization and stress. But for families with a child with a disability, a visit to the doctor or hospitalization is not only a nuisance, it is stressful, often completely impossible or even traumatizing.

Many medical practices are not accessible for people with disabilities because there are steps at the entrance, so start it, says Christian Birzele-Unger, father of a 38-year-old mentally handicapped daughter. "The really big problem, however, is that there are only very few doctors who can deal with people with disabilities," says the father. “My daughter can speak, but she needs some time, and hardly a doctor waits for her answer.” And that means: people with disabilities and parents often feel that they are not being taken seriously. The second big problem, according to Birzele-Unger, is the hospital stays: one parent always has to be admitted to take care of the care and communication. Also to describe how the medication is tolerated and how the child is doing. “If I imagined that I wasn't there at the hospital, what would happen then?” The father asks himself.

For years, associations like the Federal Government's Commissioner for the Disabled, Jürgen Dusel, have been demanding that all people with disabilities have access to all medical facilities. But the reality is still different. This is also confirmed by Dr. Anja Dietze, company spokeswoman for the Esslingen Clinic. If people with disabilities are alone in the hospital, this is a great challenge for the clinic staff: "The nursing staff tries their best to fill this gap, but unfortunately we cannot guarantee one-on-one care."

Do you need support as a family? The family relief service of Lebenshilfe Kirchheim is here. Sabrina Schmid organizes hourly care for your child or your relative. Trained helpers can pick up your child for a walk or play with your child. And so give you time as a family. Of course, always in compliance with the required hygienic standards

Contact: Sabrina Schmid, Lebenshilfe Kirchheim, Tel. 01 78/8 58 73 67, Monday to Friday, 8 a.m. to 4 p.m., email: [email protected], web: www.lebenshilfe-kirchheim.de