By Rose Dekker / cover photo by Zac Ong on Unsplash
(Names in this article have been changed to protect the privacy of individuals.)
People with intellectual disabilities are amongst those disproportionately affected by the COVID-19 measures. Besides being more vulnerable to the virus because of health complications, people with intellectual disabilities often benefit greatly from having a daily routine, which has become impossible due to strict coronavirus measures. And everything becomes more complicated because they often don’t understand what is going on.
In the Netherlands, people with intellectual disabilities often live fulltime in care centers. These centers provide people with the support and healthcare they need, while also providing a caring environment where people have the opportunity to grow and learn to their ability.
Anne works in one of these centers in the Netherlands. “One of the biggest problems right now is that our daily activities are canceled,” Anne tells us. Her clients usually participate in weekday activities, which take place outside of the center. Depending on their capabilities, some take care of animals, some work in cafes or bakeries, and some study. Many of Anne’s clients benefit greatly from these routine activities and find gratification in their weekday jobs. But due to measures against the spread of COVID-19, these activities have become impossible.
“Their routine is gone. And they don’t understand why they can’t go to their daily activities anymore,” Anne tells us.
However, Anne’s clients are lucky to have a large outside space that they can still use. They can help with some tasks inside the center as well, such as cooking and cleaning. Anne and her colleagues find creative activities to fill the rest of the days.
But not all people with intellectual disabilities can cook or do crafts. Judith works with people with profound intellectual disabilities, many of whom suffer from serious physical disabilities as well. Just like Anne’s clients, they usually participate in weekday activities. Because Judith’s clients don’t understand spoken language, their activities are touch or hearing based: they make music with instruments, go swimming, get massages or take baths, listen to people reading, or go for walks. But for the past three weeks, these activities have all been canceled.
“They are not allowed to go anywhere, and they are not able to do anything. They are not even allowed to walk around outside,” says Judith. The eight clients in her group stay inside the center all day.
But the biggest problem with the coronavirus measures is Judith’s inability to explain the situation to her clients. “Their capability of understanding is comparable to that of babies. Our clients don’t understand spoken language,” Judith tells us. “I cannot explain to them what the coronavirus is. They don’t know why they are not allowed to go outside.”
Of course, staying home affects her clients a lot.
“You can see their frustration through their behavior. Clients are becoming very restless, or they are making a lot of noise. Some are acting out. If someone is sitting in a wheelchair and can barely move at all, all he can do is make noises to indicate he is dissatisfied.”
Usually, parents of Judith’s clients take their children home from the center regularly, to spend a day or a weekend with their children. But due to strict social distancing measures, this is currently not allowed. Parents were faced with a difficult choice: they either had to take their children home until coronavirus measures relax, or they had to leave their children at the center without being able to spend time with them.
Because Judith’s clients require healthcare around the clock, it is impossible for many parents to take them home for weeks in a row. Many parents have only one real option: to leave their children in the care center during this time. They can either contact their children by video call or visit in person, but stay outside of the building, and communicate through the glass windows. Physical contact is not allowed.
“They can see their parents through the window, but they don’t go home with them like they usually would. They can’t understand why they can’t go with their parents anymore. It is impossible for me to explain.”
Last week, the Dutch government announced the measures against the spread of coronavirus will stay in place until April 28, and it is far from certain whether the restrictions will be relaxed at that time. Of course, these measures are important for everyone’s protection. But they cause a lot of distress for people with intellectual disabilities and put a lot of extra pressure on healthcare workers.
To make the situation bearable, healthcare staff needs to be flexible and creative. But others can also help. “A group of musicians came to play at the center,” Judith says. “They played music from outside, in between the buildings, so you could listen to it from inside or outside. We went to the garden with a couple of clients. They enjoyed this a lot.” In this way, resourceful individuals can bring some cheerfulness in this dreary and difficult time.