There is an acute shortage of residential and accommodation places for children with a very serious or multiple disability. Parents who start looking desperately often get zero on the complaint. The demand is huge, but the supply is missing. Joyce Prinssen (51) and Jeroen Heesterbeek (39) from Tilburg were done with it and decided to start a care facility themselves.
The life of Joyce and Jeroen is a continuous care marathon. Joyce ‘daughter Madeleine (15) is multiple disabled. “Turning, dressing, giving tube feeding, setting a speech computer and in between bubbles to school”, the list of tasks in the morning does not stop.
Luke (11), Jeroens son, also needs intensive care. “He can’t talk, gets upset quickly and can then show aggressive behavior,” Jeroen says Omroep Tilburg. “A day with us is continuously switching: offering safety, care and structure. Every sound can be the moment when you have to intervene immediately, day and night.”
Rejected
The two tried to find a suitable place to live for their children. Without success. “We have approached more than forty institutions. We received a no 31 times,” says Jeroen.
And they are not the only ones. Research by the Knowledge Center for children with a very serious mental and multiple disability (ZEVMB) shows that almost three-quarters of parents are looking for a place to stay or place to live. But almost half of the children can’t go anywhere. The range is far too small, waiting lists are too large and the combination of complex care with the young age makes placement extra difficult.
“You have to be able to trust someone 120 percent with your child’s care. If something goes wrong, he can’t tell. That will keep you awake,” says Jeroen. After so many rejections, he decided: “This has to be done differently. Luke is probably not the only one.”
Own initiative
Joyce and Jeroen met through the school. Both were stuck in the same hopeless search for a safe place for their children. They decided to forge plans themselves.
“We want a small-scale residential, care and daytime spending place for young people with different care questions,” explains Joyce. What is special is that their concept is also welcome. “Usually you have to wait until your eighteenth, due to rules and financing. For children with intensive care needs that is too late.”
But your own living initiative appears to be an administrative obstacle course. Municipalities are reluctant to spend land. For example, Joyce and Jeroen were recently told that the piece of land that their project developer in Tilburg had in mind is not suitable.
“It is important that the municipality continues to continue with us,” says Jeroen. “All signals are green, only the place has yet to be determined.”
Time is penetrating
In the meantime, the clock is ticking. “Luke is only eleven, but already a strong boy. The point comes faster than his eighteenth that the care at home is no longer feasible,” says Jeroen.
Joyce adds: “Madeleine turns fifteen. It’s not just about her age, but also about ours. I want her to live in a place where she is safe, is happy and gets good care. That means releasing, leaving someone else and finally being just a mother again.”