A five-year-old girl, weighing 6kg, who has lived in an institution since she was a few months old, because she has spastic cerebral palsy. At five years old she is the size of a very skinny 18-month-old and she has reached the milestones of a four-month-old baby. On first meeting her, it is easy to presume that she is very severely impaired, both physically and intellectually. However, appearances are deceiving.
When you spend a bit more time with her, it becomes clear that her physical disability cannot possibly be as severe as first thought, because if it was, she would have severe contractures at most of her joints by now, and she doesn’t. Then when you get to know her a bit better, it becomes clear that, although she does not talk, she is able to understand many things and that she has found ways of communicating what she does and does not like. In fact, it starts to look increasingly likely that both her apparent physical and intellectual impairments might be more due to neglect than to her congenital disability.
This is true for many children with disabilities in institutions. Unfortunately, it is still true that in most countries children with disabilities make up a significant part of children in institutions, in some places more than half.
As mentioned in the blog about how disability lands children in institutions (HERE), part of the problem is the ability to afford medical care. Both to prevent disability from developing and to make sure that the child has the support needed to become as independent as possible. Just like with free education, free or heavily subsidised healthcare is an important investment to make by governments, to prevent high costs from a range of consequences of inaccessible healthcare later on.
However, to be able to cope with the care of a child with special needs, parents need more than affordable healthcare. Being able to access various community services such as rehabilitation support, physiotherapy and speech therapy, instead of only having these services available to people who are institutionalised, as is the case in some countries, is important. So is access to things like mobility aids such as crutches, prosthetics and wheelchairs, and buildings that are accessible to people with disabilities.
As well as the presence of day-care for children with disabilities in the community, so that parents are able to work and earn money. Or, as is seen in some countries, an allowance paid to a parent who is unable to work because she or he is caring for a child with disabilities, so that the family still has an income.
Finally, access to education is important too, and a major reason for institutionalisation of children with disability. While all over the world progress is slowly being made in providing inclusive education, allowing children with disabilities to enrol in mainstream schools and receiving the support and assistance they need there, there is still a lot to be done. It is still the case in many places that mainstream school refuse to accept children with a disability – even when there is no intellectual impairment whatsoever. And while there may be special schools, these are usually few and situated in the major cities. So, for children to attend them, they have to board.
So, again, a lot can be done in a very practical sense to support parents to enable them to take care of their own children. Though part of the process will also be the raising of awareness, in places where the stigma of disability is still very great. By allowing communities to really interact with people with various impairments and discover that they are simply humans, a lot of attitudes have already been changed. So, we will keep going to change more and give children with disability their rightful place in the community.
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