In last year’s blog to mark the International Day of Persons with Disabilities (which you can find HERE), I explained how children with disabilities are more likely to end up in institutions and less likely to get out of them, even when a transformation of care process has been set in motion. This year, I would like to shine a light on how children with disabilities are more often than not excluded from any decisions made about them, even more so than children in institutions are in general.
Child participation means giving children information about the situation they are in and about what is going to happen and listening to their thoughts and opinions about that. This should be done in a way that is appropriate for the child’s age and level of understanding. Meaningful child participation involves not just allowing the child to speak, but also actually listening to the child and taking what she has to say into account when making decisions about her best interest and about events in her life.
Children who live in institutions are almost never given the opportunity for participation in their care and placement decisions. They are simply informed of what to do and where to go, and are expected to follow these instructions. For children with disabilities, the situation is usually even worse. It is quite common that they are not even told anything whatsoever, they are simply picked up, or pushed in a wheelchair and left in a different place, that’s it.
It is often very hard to convince people that it is to everyone’s benefit to give a child a say in her care decisions, both because when her views are taken into account, the decision made is based on more complete information. And because when the child is informed and involved, she is much more likely to accept the decision made and not become difficult to handle. It is even harder to convince people that it is possible to involve children from a very young age in their care decisions. The general view is that children who are younger than 7-10 years old, are unable to make any meaningful contribution. This is not true at all. While you do need to adjust the way you explain things to younger children, and need to have an understanding of their ways of communicating to be able to get meaningful contributions, a child as young as two is already able to communicate their opinions about various things.
What is hardest of all, is to convince people that children with intellectual disabilities – or even children with severe physical disabilities – are able to be involved meaningfully in their care decisions. Again, they definitely are. If they have intellectual disabilities, you may need to adapt the way you explain things to their level of understanding. And if they have speech problems or are non-verbal, you may have to use different ways of communicating. None of this means that they do not have an opinion or that they are unable to communicate it.
Because children with disabilities experience their surroundings in ways that people without disabilities are just not aware of, it is particularly important to listen to them. When you do not have all of the information, you are not able to make te best decision. And if you have never run into the problems associated with being unable to go where you want to because of accessibility problems or with being completely overwhelmed due to sensory integration problems, you are unlikely to take these things into account when you make your decisions.
Children and adults with disabilies have to be heard. They have to be given a voice in their own lives. And they also have to be informed of their circumstances and about what is going to happen, rather than just picked up and moved on.
Just like in last year’s blog, the bottom line is that children with disabilities are children. They have the same rights as all children. Particularly the right to respect, dignity and being acknowledged to be an actual human being.
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