Kofi is a five year old boy with
cerebral palsy; it looks like he has the severe type of cerebral palsy and does
have seizures regularly.
Kofi responds well to his
environment even though has 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 install 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, is there any 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 have also seen some of the second hand disability equipment that
is usually sold along the streets in town, I can’t seem to find anything 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 can pay in installments,
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 cerebral palsy.
Mrs Hannah Awadzi, Executive
Director of the Special Mothers Project says, “I will be happier if there were
more options to points parents to, there are a few organizations providing services
for children with cerebral palsy, it gets overwhelming and it can be
frustrating for most parents
Akua is not alone, many parents or
families raising children with cerebral palsy 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 the last
on the agenda for any person until it has affected you in one way or the other,
until recently no one really talked about cerebral palsy. We are familiar with
hearing mothers of children with autism talk and provide services within that
community but not cerebral palsy.
Cerebral palsy, a neurological
disorder that affects the movement and sometimes speech of children is quite
different from autism or down syndrome but in Ghana is looks like all children
with disabilities have been lumped together and most of the time a one size fit
all policy solution is suppose to solve all the challenges that families face.
For example, a child with mild to
moderate cerebral palsy is suppose to be in the mainstream school, however for
the lack of understanding and awareness creation, such a child is usually
refused admission in both a mainstream schools and special schools.
Every parent of a child with
cerebral palsy 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 cerebral palsy who has kept her son in a mainstream school for about four
years now says, “I pay extra, I pay for 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 but
gradually as he mingles with the regular children.
The lack of support services be it
professional care givers, suitable mobility equipment, the lack of educational
facilities that understands the condition of a child with cerebral palsy and
many others is perhaps what has contributed to the desperation and frustrations
of many families raising children with cerebral palsy.
The Special Mothers Project in our
advocacy for the last two years have called for one stop educational setting or
facilities where children are well taken care of, where therapy is done as part
of learning, where equipments are available to support the movement of children
with cerebral palsy within and out of the facility.
The project has offered to organize
workshops and training for organizations on cerebral palsy and how they can be
involved while empowering parents to venture into the special needs, cerebral
palsy service provision.
The project is also urging
especially the youth to build careers around supporting children with cerebral
palsy specifically since many homes are yearning for such service providers
As the world prepares for the Global
Disability Summit in July this year, DFID’s vision for disability inclusion is:
‘to ensure people with disabilities are consistently and systematically
included in international development and humanitarian assistance’.
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 start
point for major change 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 practice and evidence from across the world.
