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Opinions of Monday, 18 June 2018

Columnist: ghananewsagency.org

Cerebral Palsy and the service providers in Ghana

Kofi is a five-year-old boy with Cerebral Palsy (CP) and it looks like he has the severe type and does have seizures regularly.

Kofi responds well to his environment, even though he cannot move at all. Most importantly Kofi’s family love him and want to get the best for him. The family has hope that once Kofi is alive then God has some good plans for him.

They are patient with Kofi to see how God will unveil His plans for him, However, Kofi’s mum Akua (Not the real name) has some challenges, challenges with moving Kofi not just in and around the house.

Akua will love to take Kofi for a stroll in the neighbourhood or put him on the Veranda for him to enjoy some fresh air but that seems to be a bit of a challenge, he does not have the suitable equipment to do that.

Kofi has to be carried, if he has to be moved from one place to the other and the mother cannot carry him for a long time, he is getting heavier by the day. Akua called the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues in Ghana, and ask, if there are organization that brings in equipment, that is not too heavy to push around, has wheels and is suitable for a child with cerebral palsy? I will love to have something like that for Kofi but I don’t seem to get anything like that.

Akua says, “I have scanned around some shops and had also seen some of the second hand disability equipment that is usually sold along the streets in town, I can’t seem to find any type that will be suitable for a child with cerebral palsy, do you know any organization that can bring in such equipment for us to buy, even if we have to pay in instalments. Some of these equipment will be really helpful and make our lives easier.”

The Special Mothers project links parents to the limited but available support services in Ghana. On an average day, the project answers about 10 calls or more from parents seeking one service or the other for their children with CP.

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project says, “I will be happier if there were more options to direct parents to where to get such special equipment, however there are a few organizations providing services for children with CP, it gets overwhelming and it can be frustrating for most parents.

Akua is not alone, many parents or families raising children with CP are looking for services that can make their lives a bit easier. They want to have an enhanced life but there are no service providers in Ghana.

Cerebral Palsy seems to be least any parent can think of, until it happens. Until recently, no one really talked about cerebral palsy. We are familiar with hearing mothers of children with autism talk and provide services within a community but not CP.

Cerebral Palsy, a neurological disorder that affects the movement and sometimes speech of children is quite different from autism or Down syndrome, a condition that occurs when there is an extra chromosomes during the formation of the foetus. In Ghana it seems like all children with disabilities have been lumped together and most of the time “a one size fit all policy solution” is supposed to solve all the challenges that families face.

For example, a child with mild to moderate CP is supposed to be in a mainstream school, however for the lack of understanding and awareness creation, such a child is usually refused admission in both a mainstream school and special schools.

Every parent of a child with CP knows that the children do better when they mix with regular children, they are motivated to keep trying their movement skills and it really helps with improving the speech.

However, in Ghana, a child with cerebral palsy, be it mild or moderate is best kept at home unless the parents are really influential or are rich to pay extra for everything else.

Emelia Gyenkel, mother of Nana Yaw with CP, who has kept her son in a mainstream school for about four years now says, “I pay extra, I pay for a care giver, I pay for extra attention, I pay higher than the average child in the school.”

But Emelia is thankful that at least her boy can go to school, because she sees Nana improving steadily as he mingles with the regular children.

The lack of support services, be it professional care givers, suitable mobility equipment, educational facilities that understands the condition of a child with CP and many others, is perhaps what has contributed to the desperation and frustrations of many families raising children with CP.

The Special Mothers Project in its advocacy for the last two years, had called for a one stop educational setting or facilities to take care of CP children, where therapy is done as part of learning, with the necessary equipment available to support their movement within and out of the facility.

The project has offered to organize workshops and training for organizations on CP and how they can be involved while empowering parents to venture into the special needs or cerebral palsy service provision.

The project is also urging, especially the youth to build careers around supporting children with CP since many homes are yearning for such service providers.

As the world prepares for the Global Disability Summit in July this year, the UK’s Department For International Development’s (DFID) vision for disability inclusion is: ‘to ensure people with disabilities are consistently and systematically included in international development and humanitarian assistance’.

The DFID says “We will host a Global Disability Summit in July this year to galvanise the global effort to address disability inclusion in the poorest countries in the world and act as the starting point for major changes on this neglected issue

The objectives of the Summit will be to raise global attention and focus on a neglected area; bring in new voices and approaches to broaden engagement; mobilise new global and national commitments on disability and showcase best practices and evidence from across the world.