I would like to tell you a story about a little boy called DJ, which illustrates the challenges that parents of children with disabilities and the children themselves have.
At the age of two years, DJ’s mother became concerned about his speech. They visited their local health centre where his mother was told “boys are slower than girls.”
So there were no alarm bells. She was somewhat reassured, though she was still a little concerned. So when he was almost three years old, she took him somewhere to be assessed. They told her at the assessment centre that he could not be assessed properly until he was six.
Families and children frustrated by stigma
Next she tried to get him into school and when she went to the first school she was told that ‘they don’t take children like him’. This made her very frustrated because she had done so much in trying to get services for him. So she kept him at home until the age of six years, when she thought she would get him into a government-run primary school that took children who had special needs.
DJ’s family story will be familiar to other parents. When parents are concerned, they need to have someone to properly listen to their concerns. Also in the case of DJ if we were doing the regular screening that we should be doing at well child clinics, then we would probably have confirmed the concern of his mother and been able to address it properly.
In many cases, when parents are not properly listened to,the response they get may reassure them that nothing needs to be done – and so they do not feel the need to do anything else.
Greater sensitivity needed among professionals
In this situation, however, the mother did so something else: she went to try to get DJ assessed. She went somewhere where the resources probably did not exist for the assessment of a young child, but that is not what she was told. She was told that he could not be assessed, which is not correct.
Then she went to school and there she felt the stigma that parents of children with disabilities feel, because she was told that they do not take children like him.
Many times when parents tell me what they have been told by different professionals, whether it be in the health, education or social sector, they are such horrific things that parents are told about their children that immediately it is necessary to apologise for other professionals.
Support most critical in early years
It is so important that we identify what support children and their families require when they have children who have special needs. This is especially significant between ages zero to three years old, as DJ was when his mother first sought help, so that proper screening and support can be provided. This is a stage when the brain grows at a rate never repeated in life – the most important stage of child development!
As professionals we need to do more to support families, we need to identify for them the resources that are available in our communities and we need to ensure that we continue to support families. For those of us whose responsibility it is to support them, we need education on two levels to ensure this.
We need education on the early identification of children with special needs and education on resources that are available for children with special needs. We also need public education to reduce the stigma that parents of children with disabilities and the children themselves feel.
What is UNICEF doing?
Professor Maureen Samms-Vaughan was speaking at a recent workshop hosted by UNICEF, where she presented a UNICEF-commissioned comprehensive mapping of services for children with congenital Zika syndrome, other congenital anomalies and developmental disabilities. As part of a collaboration with the Jamaica Council for Persons with Disabilities (JCPD) and the Digicel Foundation, we continue to encourage the government to enforce the 2014 Disabilities Act, and we published a Situation Analysis on persons with disabilities. Our Brain Building Boost Project with the Early Childhood Commission aims to improve how early childhood practitioners serve young children with disabilities. This year we will also publish an updated Directory of Services for Children, Adults and Families, including resources for children with disabilities.