The Support System some parents of children with cerebral palsy want to see...

Every once in a while, I get people researching on children with special needs, approach me to get answers to their research questions. One such student was put on the Special Mothers Project platform this afternoon (31/7/2020) and the responses of the parents made me happy,

I just wish there was a way to amplify their voices. Support system for many of these parents is not calling parents of children with disabilities together to give those diapers, rice, toilet roll or even money, support system goes beyond that.

Below some of the interesting responses from parents, but before I post what some of the parents shared, I wish that Government, political parties, NPP, NDC, will learn to include the needs of parents of children with disabilities in their development plans and programmes, question is where are parents of children with disabilities featured in your manifestos?

Some Parents responses: For me a support system is having a decent school in my district or locality where I can leave my child so I go to work and earn a living. Where I pay REASONABLE and affordable fees for my child to be cared for like the human being she is with the same dignity and respect regular kids have

Better still if all children (regular) are going to school for free, why my child with Special can’t needs enjoy free education. Free education in Ghana is now a political issue but it does not include children with special needs, sadly

A support system means my child will have access to relevant healthcare and specialists in school and out of school so she can develop despite her disabilities and contribute her quota

Government some time ago announced that all children with cerebral palsy will be put on The Livelihood Empowerment Against Poverty (LEAP) programme, really! Are we that poor?  Under the LEAP programme, a single beneficiary takes 64 cedis per quarter.

Like not telling me you will give me 35 cedis for a quarter when tomatoes alone cost 30 cedis a bowl... (Smiley of laughter)

When parents have to pay 15 cedis as dropping (hiring a Taxi) to claim that amount because I don't have a nanny and have to come with the child.

Parents whose children have Down syndrome also on the platform shared their views

One of them said: We seem never a part of government priorities

I have been to my district assembly since September last year to see if I can assess the disability fund. But.......

On Health, one said I don't know the effectiveness of the health insurance card now but it doesn't cover most of the specialist care my son needs… And it will be in my own interest to show real cash to get a certain level of dignified care for my son.

We want a Health insurance scheme that works for our children. At least, some, if not all drugs my child needs should be covered. Even for the ongoing voter registration exercise, parents of children with disabilities are not considered, if you don't have a caregiver, you have to queue with your child to be able to register

Jobs. Most parents with kids with disabilities need jobs. That is also a support system. If I have a job I can then care for my child.

So we have to queue like a parent said, from Tema where I live to Bolgatanga to write our names

We want a support system that is Community based and very affordable,   efficient therapy centres and the availability of assistive devices for our children. There should also be a counselling system that works, a counselling programme where the counsellors understands our needs and help us to be emotionally and psychologically balanced

My Personal comment: I laugh when politicians pick one child with disability and go to donate to him or her as if they care. Parents of children with cerebral palsy and other disabilities want to hear about implementable policies.

We are tired of people using our children to receive donations and portraying us as poor people without opinions. We know what we want - Nothing about us, without us

The Special Mothers project is an advocacy programme on issues of children with cerebral palsy and other disabilities and their families. The Project also provides professional counselling for families raising children with disabilities.

you may contact us on 0277001900