It was a Saturday Afternoon, I was lost in thoughts, thinking about what to with my life, when the phone rang…
It was a familiar name, someone I know in the disability advocacy business, he needed desperate information, he wanted to know what I did to help with mothers of children with cerebral palsy.
So I briefed him, he was calling me about an advocacy programme I run for children with cerebral palsy and other disabilities, he wanted to know what specific help I gave to parents of children with cerebral palsy.
Adam has encountered a mother of a two-year old child with cerebral palsy, this mother was feeling helpless and desperate, and she had roamed the length and breadth of Ghana looking for a cure for the child.
I explained to Adam that the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues, researched about the policies that existed in Ghana to support children with cerebral palsy and other disabilities and give information to parents to access the policies.
This woman had a child diagnosed with cerebral palsy. Because of her child, she cannot work, and her desperation has led her to move from place to place seeking help. She has used all her life savings in search of a cure for her child to no avail. I pointed her to the existence of the Disability Fund at the District Assembly level and urged her to apply.
Where she was going to start from was a big issue, so Adams who is a disability advocate and knows the system stepped in, Adam know Mr A at her District Assembly and he was going to talk to him to facilitate the process.
For this woman to access the government designated funds for her daughter with disability, she need to know someone within the district assembly setting.
Adam who was moved to tears but willing to work got to work immediately, making calls to people he knew at the Department of Social Welfare to ensure that the woman got the funds to start some small enterprise to be able to feed herself and her baby.
As I pondered over the issue of this woman, I thought to myself, how many of these cases are dotted all over the country that do not know anyone and so cannot get any help.
To be able to access the Disability Funds in most of the District Assemblies, one needs to know somebody.
“Our whom you know canker”, if you do not know anybody who can press some buttons for you to have access to the spelt out government policies, forget it, you can’t get it.
As a society, sometimes, it seems that our policies are discriminatory, if you do not know anybody at a vantage place, the policy cannot work for you.
For example, government has an Inclusive Education Policy, but majority of children with cerebral palsy cannot access school or education.
One needs to be very rich to be able to send a child with cerebral palsy and other disabilities sometimes to school.
The last time I enquired from a Ghanaian private school that said it was ready to accept children with all kinds of disabilities, their fees was about 6,000 cedis a term. How many parents of children with disability can afford 6,000 cedis a term, especially when they have other children to cater for?
So I always ask, why is the Inclusive education policy for instance not working in all government schools? What will it take for government to effectively implement Ghana’s inclusive education policy? Why is the government not engaging parents of children with disabilities to know what can be done?
Usually on occasion like Mothers’ Day or similar events, some of these parents will be gathered sometimes by politicians who will give them “peanuts” in front of TV Cameras and that is the end.
Why can’t the average parent walk into a district assembly to apply for the funds for the purposes spelt out, why does one need to know someone to access a government policy?
As these and many questions continue to race through my mind, I can single out one of the reasons why our policies do not work, it is the “Whom you know canker”
It is about time that government spells out with clarity, what is on the table for children with disability and their families and take steps to make it work.
In my interactions with many of the parents, some of the things they crave include an opportunity to be able to send their children to school or some kind of educational or rehabilitation facility where the children will be well taken care of, to enable the parents work and earn an income for a living.
Others are also calling for the formalizing or regularizing the care giver system, such that government could employ trained caregivers and assigned them possibly to a cluster of parents within a community.
I always say that caregiving is not a menial job, it is a job that entrusts the life of a child with special need to a responsible person’s hand. Unfortunately many parents cannot afford the services of professional caregivers and many do not know how to spell out their terms and condition.
If government is able to put in place such policies and programmes for families raising children with disability in addition to dealing with the “whom you know” canker, the problems of families nurturing children with disability could perhaps be half solved.