During the corona pandemic, four times as many people with an intellectual disability died as in the general population, research by Radboud university medical center showed this month. Can that be avoided next time? “Physical touch is necessary.”
Because suppose you are so limited that you can only communicate through physical contact, then the question is whether you can go into quarantine or isolation.
‘Not even a hug’
Michel van Mullem lives and works in a community of care group ‘s Heeren Loo. He felt very lonely during the pandemic. “It was a rotten period, you weren’t allowed anything,” he says. “In the beginning you couldn’t even receive visitors. Later you could, but then everyone was all wrapped up and you couldn’t even give each other a hug. I thought that was really bad.”
The Netherlands has approximately 400,000 people with an intellectual disability. The level is very different. This includes people who function at baby or toddler level, but also people like Michel who live independently and work in a residential group. “I was also very afraid of getting corona. But I didn’t dare say that, because then I thought I would get very sick. But luckily that didn’t happen.”
Epidemiologist Maarten Cuypers is a researcher at Radboud university medical center in Nijmegen. He has done research among people with intellectual disabilities during the corona period. “People with intellectual disabilities have a higher risk of death anyway compared to the general population,” he says.
The life expectancy of people with an intellectual disability is on average 15 years lower, says Cuypers. “That is often due to underlying conditions such as diabetes, obesity or a weak heart. But that difference increased significantly during the pandemic,” he says. “People with an intellectual disability are also extra vulnerable to corona due to underlying suffering.”
But preventing corona and complying with the basic rules is more difficult for people with intellectual disabilities, says Cuypers. “Within institutions and residential groups there is an increased risk of contamination due to the many close contacts.”
‘s Heeren Loo has such residential groups. Throughout the country, 17,000 employees of the care group provide care to 15,000 clients. “The epidemic has had a major impact on our residents,” says member of the Executive Board Ageeth Ouwehand. “Many of them have felt extremely lonely.”
“It is very difficult to keep your distance from people who function at the level of a 1-year-old. That is actually not possible at all,” says Ouwehand. “Physical touches are then the only way of contact. That way you communicate with each other.”
Due to the situation during the corona pandemic, there have been ‘moral deliberations’ at ‘s Heeren Loo in recent months. All those involved, such as clients, employees and family, entered into a dialogue with each other. What went well and what went wrong? “The moral question is, is health the highest value or are there also other values such as safety, proximity and meaning? How do you weigh them in your decisions?” says mental handicap doctor Talitha van den Heuvel at ‘s Heeren Loo.
‘Felt like a prisoner’
“If a client can only communicate physically, what will happen to that client if the employee is completely wrapped up and wearing a face mask? How do you communicate if you can see someone’s face more? That is very frightening for certain clients. I have really struggled with that during corona,” says Van den Heuvel.
Michel often felt powerless. “And then I got very angry, but I didn’t dare to express it. Then it started cooking in my head. It was very bad,” he says. “I just felt like a prisoner. Punished innocently, because I had done nothing at all.”
The data research by epidemiologist Maarten Cuypers is important for the future. For the first time, the entire, very diverse, group of people with intellectual disabilities has been mapped out. If another health crisis breaks out, these people cannot be overlooked.
“But if measures have to be taken, customization will have to be provided,” says Ouwehand of the Board of Directors of ‘s Heeren Loo. “I have seen a lot of sadness, but we have also learned. Suppose another pandemic breaks out, then I expect that people will no longer think linearly from control.”
Not without risks
And that is also her message to the government. “We have to take other values into account just as much. There are risks involved, but life is not without risks.”
Ouwehand: “You can reduce the risk of infection, but if someone is unhappy alone in a room and becomes depressed and anxious, then I don’t know if we are doing the right thing.”