There are far too few places to live and stay for children with very serious intellectual and multiple disabilities in Brabant. And yet those places are desperately needed, especially for the often overburdened parents. Zwantine de Schipper from Den Bosch also knows this. Her son David (17) cannot talk, eat or walk independently. “He needs care day and night. Then you just have to be able to catch your breath every now and then, otherwise you will fall over,” she says.
Children with severe and multiple disabilities are supervised and cared for at the residential and overnight accommodations. David’s mother also uses this. Her son has epilepsy and requires a lot of care. David goes to stay at Ster Zorg in Breda for one weekend a month. This is a small-scale accommodation facility where a total of seven children are now cared for.
“A lot of things at our house revolve around David. He needs his medication on time and has a fixed schedule for when he needs to rest and be cared for,” Zwantine explains. The place to stay gives her some breathing space. “We also want to give our other children enough attention. They often have to be patient. And it’s nice to be able to go to the movies every now and then, for example.”
Half of them cannot go to a place to stay
Zwantine thinks she is lucky that David can still stay at such a place. Because many other parents cannot find a place. The living and overnight accommodations are often full. This is due to a shortage of staff and because these children need specialist care, according to research by the knowledge center for children with very severe intellectual and multiple disabilities (ZEVMB). The center of which Zwantine is the director.
Almost half of the children with such a disability cannot go to a place to stay, while more than seventy percent of the parents in this group would like to do so. Parents who want their child to live in assisted living are also disappointed. Most children with multiple disabilities live at home, because there is little space in residential facilities.
Parents become overtired
At Ster Zorg in Breda they often have to say ‘no’. Eline Roovers, owner of this guest house, sees many parents who cannot find a place anywhere. “Parents are often very disappointed when I have to show them the door,” she says. “They often no longer have time for their own social life. I see a lot of sadness in parents and I see that they often become overtired.”
But at Ster Zorg they cannot accommodate more children. “We provide specialist care, where we really get to know the children. Because the children cannot talk, it is important that we learn to recognize how they are doing and what they need. I have two bedrooms here, so I can accommodate more children In addition, there is already a shortage of healthcare staff. It is difficult to find people who want to work at night and on weekends.”
Possible solutions
The ZEVMB knowledge center will map out where there is a shortage of places to live and stay and hopes to be able to help parents find locations where there is still room. The knowledge center will also contact healthcare offices to draw attention to the problem. Healthcare offices make agreements with healthcare providers about, among other things, what care they can provide.
In the future, it should be possible to stay with your own care team from your personal budget. This is not yet allowed for all healthcare providers and it is therefore not yet reimbursed everywhere.
