A five-year-old girl, who weighs 6kg and spend 20-22 hours a day in a baby crib that is a bit too small for her, at an adoption centre where she has lived for over 4 years now. All because she has cerebral palsy.
Today is the International Day of Persons with Disabilities. A good time to take a moment to look at the situation of children with disabilities in institutions. Unfortunately, it is not a pretty one.
In many countries, worldwide, children with disabilities make up a substantial part of children in institutions. In quite a few countries, they are even the majority. As more and more countries become aware of the need for deinstitutionalisation and for the move towards family-based care, unfortunately the proportion of children with disabilities in institutions increases, because they are often overlooked and left out of the transition arrangements.
There are a variety of reasons why children with disabilities end up in institutions, and many of them can be solved by redirecting funds or awareness raising. One reason, which was discussed in the podcast on Abandonment (which you can find HERE), is parents lacking the money to pay for the medical costs needed to keep the child alive and well. A second reason is a lack of community services, like access to therapists and mobility aids, without which it can become very hard to care for the child as she grows older. A third reason is lack of access to education, with many mainstream schools refusing to accept children with special needs and special education not being available locally, sending the child to a far-away institution may seem like the only way to make sure she gets an education. A fourth reason is improper advice from doctors. When a doctor tells a parent that the child is unable to live in their care or that the child will never know them, or that the child will be better off and happier in an institution, parents will tend to feel forced to take their advice. A fifth reason is stigma. In many cultures, a child with a disability is seen as a curse, as a witch, as proof of incest, or as proof of demonic possession. This can create an enormous pressure on parents to get rid of the child and can make life – for both the parents and the child – in the community unliveable. Or parents may fear for the child’s life, if their neighbours or relatives are determined to kill the ‘threat’ in their midst.
In all these cases, the parents will see no other option, and possibly no other way to keep the child alive, than to abandon her or place her in an institution.
And then there are the institutions… Children with disabilities who end up in institutions, are very often there for the rest of their lives. In some cases, children and adults with disabilities are placed in the same institution, and even in the same room, making the children even more vulnerable to abuse than they would have already been. And living conditions of children with disabilities are almost always far worse than those of other children in institutions.
As has been mentioned numerous times now, institutions struggle, and fail, to take care of children’s essential basic needs. When a child has these essential basic needs, but also special needs, she has no hope of remotely adequate care in an institution. Although some institutions for children with disabilities are really run with the very best of intentions, with a determination to give the children a better life than they would have in the outside world where the stigma is so great, only very, very few institutions for children with disabilities are run by people who have any kind of knowledge or training of the kind of care that is needed to meet both the essential basic needs and the special needs of these children. The result is that they do not come close to meeting any of the children’s needs.
Children with disabilities often spend most – or even all – of their time in their beds, sometimes tied down in them. Or they are tied into a chair of some sort and left to sit there all day. Hygiene conditions are often lacking, particularly when the children get bigger and it becomes harder to carry them around and bathe them properly. With one caregiver looking after many children, it is a challenge to just keep up with all the nappy changes that need to be done. Let alone there being any hope of assistance in play of or teaching children self-care skills.
In many institutions, children die young, usually due to neglect and/or lack of medical help. People running the institutions come to see it as inevitable, a normal course of events, that these children do not reach adulthood, even though the cause of death is not their disability. And so it becomes a self-fulfilling prophecy: death is expected, less is being done to prevent is, so death comes sooner.
On this ‘world disability day’ we need to remember that children with disabilities are children. That they have a lot to give, that they have great potential to grow and learn. And that they deserve our respect, our care and our love. They deserve family-based solutions.
Please share this post, to help make more people aware.
