DR RADICA MAHASE
“I don’t want to depend on the disability grant to take care of my child but I feel helpless. I am a single parent and because my child is low functioning on the autism spectrum, I have to be there with him all the time. He’s ten years old with no sense of danger, unable to use the toilet or shower by himself and he can’t feed himself so I have to stay home to take care of him.
"I leave him with a relative once in a while when I doing a little hustle, but no one can really care for him. If I had a safe place to leave him, with people who understand his special needs then I could go out and work and I wouldn’t have to depend on the grant. But for now, I really don’t have any choice but to stay home and take care of my child.”
The Disability Assistance Grant of $1,500 per child is supposed to be given to children with either severe or complete disability and where the disability is permanent in nature. It is meant to assist children who have needs that require extra assistance (special diet, therapy, etc). However, in TT, many families rely on it as the sole source of income because there are not proper structures in place to cater to the needs of the special needs’ community. There is a lack of child care services for special needs children, lack of educational opportunities and lack of options for parents to earn a living while taking care of a child with special needs on a full-time basis. Thus, the grant has become the main source of income for many vulnerable parents.
Usually the cheques would be distributed at the beginning of the month but for the past three months, these were not available until ten-15 days into the month. This late distribution of cheques by the Ministry of Social Development and Family Services has only brought extra stress to parents who are already in a disadvantaged position.
Sarah, a single mother noted, “In the last few months, I was in a really sad place because the grant came late and by the beginning of the month, I didn’t have the money to buy food for my son. He uses medication to keep him calm, and I would usually buy a month’s supply but he went ten days without the tablets because the cheque came late. It was very stressful because he was always hyper and kept getting meltdowns all the time. I called the ministry to find out what was going on and they told me I just have to wait. I don’t think they understand how stressful it is for single parents like myself who can’t leave our children to go out and work.”
Another parent noted, “When I told someone that the grant was late the response was 'yuh make ah chile and yuh cyah mind she? Why yuh expect the government to mind yuh child?'
"That broke me. It’s not that I want to depend on this cheque every month. If there was a safe place, I could leave my child, I would go out and work and provide for my child.”
In TT, we need to develop a holistic approach so that special needs parents, especially those who are most vulnerable such as single parents, can survive independently of social welfare grants and other handouts. We need to develop programmes that will give these parents the training and support they need to secure and maintain employment. We need proper structures in place for special needs child care and centres for special needs children where parents know that they children are comfortable and safe. We cannot expect parents whose children are dependent on them, to go out and work if there are not support systems in place to help them care for their children.
As long as we have a vulnerable population, with no supporting structures in place, we will have that dependency syndrome. And while this level of dependency exists it is important that the Ministry of Social Development and Family Services functions in a more professional manner. Parents should not have to wait until the middle of the month to receive cheques, they should be placed in such unnecessary stressful situations and most importantly, their children should not have to go without food or medicine because of tardiness on the part of the ministry.
Dr Radica Mahase is the founder/director of Support Autism T&T