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
