Introduction: - The Special Mothers Project is an advocacy and awareness creation programme on Cerebral Palsy issues. The Project does advocacy mainly through the media both social media and mainstream media with the aim of influencing policies that will enhance the lives of families raising children with cerebral palsy
The Special Mothers Project also provides a platform that allows parents of children with cerebral palsy to link up and create a network where they share experiences and engage in peer counselling
The project links families raising children with cerebral palsy to the limited but available support services and systems, the main objective of our advocacy is to have people create support services and systems that will enhance the lives of families raising children with cerebral palsy
The Special Mothers project is registered under the laws of Ghana with the Registrar-Generals Department and with the Department of Social Welfare
The Special Mothers Inclusive Centre – The Special Mothers Inclusive centre aims at championing inclusion in society. The centre provides day care services to families in need of emergency care services for example if a family raising a child with cerebral palsy really need to be somewhere and do not have anywhere to take the child with cerebral palsy, the centre makes provision to take care of the child to enable the family go about their daily activities without obstacles and discomfort.
The Special Mothers inclusive centre mainly provides professional counselling services to families raising children with cerebral palsy on what services are available, where to go, what to do and what not to do.
The Special Mothers Project operates on three major themes: Encouraging and supporting the media and selected government and private agencies to advocate for policies that enhances the lives of families raising children with Cerebral Palsy
Hosting topic based journalism workshops to encourage accurate and effective reporting on cerebral palsy issues in Ghana
Promoting equal rights for children with cerebral palsy in education and empowering parents especially mothers of children with cerebral palsy to engage in effective advocacy
There is very little knowledge or awareness on Cerebral palsy in Ghana even among health professional except for the pity or the belief that persons with cerebral palsy are possibly under a curse or they suffer due to poverty
The Special Mothers project aims at educating the public to “Change the Narrative” about Cerebral palsy the right way through the media to ultimately lead to the formulation of specific and appropriate policies that will enhance the lives of persons with cerebral palsy and families raising children with cerebral palsy
Example, many children with cerebral palsy remain a “burden” to the families raising them, most especially the mothers because there is no place or plan for them in society. Majority are refused access to education unless you have the ability to pay huge sums of money.
Education a child with cerebral palsy in Ghana is three times more expensive than educating a regular child, even though government’s policy on education at the basic level is free, most families who are fortunate to have their child with cerebral palsy in school pay for extra services like therapy, care giver services which tends to be very expensive and sometimes non existent
There are no governmental facilities either residential or day that admits such children to enable families and main care givers to work and earn an income
Even in the few selected government schools where Inclusive education is being piloted, the programme face serious constraints like lack of professional special educators, no support staff for the few special educators and no equipment for effective teaching and learning
The Special Mothers Project is engaging the Ghanaian populace through the media but also through targeted workshops/ Information Seminar for the media, staff of the Department of Social Welfare, Staff of the National Commission for Civic Education (NCCE), Members of Parliament, teachers in both government and private schools, heads of schools and other relevant stakeholders.
The Project will through these workshops and seminars share information gathered from over 500 parents mostly mothers of children with cerebral palsy with regards to the everyday challenges that families face due to the lack of educational or care facilities and other support services
The Project has adopted the Unit school at the Madina Demonstration School, a classroom block for children with special needs with the aim of raising funds and making the place special needs friendly.
The project with the needed funding hopes to tile the classroom, provide a soft playing area for the children and get other necessary and required educational materials for the classroom.
The Special Mothers Project is also hopes to get a permanent media slot where education on cerebral palsy issues is done by interviewing families raising children with cerebral palsy or pointing out lapses in the policy formulation
We realized that even where there are policies some of the staff working in the offices of the Social Welfare or the NCCE do not know about it. For example, mothers or primary care givers of children with Cerebral palsy who are not working can apply for the Disability Common fund to set up a small enterprises or support their child’s education if the child is able to access education, however, depending on the district assembly one finds themselves, the person, I mean the primary care giver may be denied access to the fund which is disbursed using the discretion of the social welfare officer in charge
It appears there is no uniformity in implementing the existing policies which in most cases are not even favourable to the family raising children with cerebral palsy.
The Special Mothers Project, having interacted with over 500 mothers (parents) of children with cerebral palsy have been able to gather information on the major obstacles, hindrances and challenges that families raising children with cerebral palsy face and will through these workshops share such knowledge to help and enhance policy formulation with regards to persons with cerebral palsy and their families
Another major challenge faced by most families is the issue of qualified care givers, the Special Mothers Project as therefore started a programme, the home based care programme that aims at training care givers specifically for families raising children with cerebral palsy to work with the families either at the home level or in schools if the child is “lucky” to be in school.
Initially, the project was looking at graduates with social sciences degree or graduates with background in community based rehabilitation and disability studies, however, many families are unable to afford the services of a graduate so we are now look at senior high school leavers with a passion to work with children with disabilities to train them.
Many families are in need of an affordable but professional care giver who is able to take on basic tasks that constitute physiotherapy and other forms of therapy.
The Special Mothers Project is hoping to create a pool of para-professionals who can take on the task of caring for children with cerebral palsy in a loving and safe atmosphere
Mrs Hannah Awadzi, Founder and Executive Director of the Special Mothers Project, is a mother of a six year old with Cerebral palsy (her first daughter).
“When my daughter was two years old, I realise that absolutely nothing is said about cerebral palsy in Ghana and the media only reports the Pity side of the issue” Being a journalist and a communications specialist, I started the Special Mothers project initially with a parent support group in mind, I couldn’t accept and believe that I was the only one facing such situation.
Upon meeting other parents, I realized that many of the mothers have had much more challenges that I could imagine, I started using the media to tell the stories of these families in a positive way but also to push for policies that favoured families raising children with cerebral palsy since it seemed that there was no concrete policies on cerebral palsy issues.
Mrs Awadzi has also authored a book titled “The Unexpected” with her local name Adwoa Okorewaa that chronicles her journey with her daughter which also serves as an all-time inspiration not just for families raising children with cerebral palsy but for everyone going through a challenging situation.
Funding the advocacy and awareness creation programme of the Special Mothers project will mean contributing to enhancing the lives of families raising children with cerebral palsy
We are hoping that through our advocacy, government, the private sector and corporate Ghana will start creating support services and systems for persons with cerebral palsy.
The creation of support services and systems will also serve as an employment avenues for the youth to take on the care of persons with cerebral palsy not just as a career but also an avenue to make an impact or touch the life of a family raising a child with cerebral palsy
The advocacy programme will be a national programme.
The workshops or information seminars will all be amplified through the media, a minimum number of 10 media houses at a time will be invited to provide coverage for all our programmes.
The Special Mothers Project seek collaboration with organizations pursuing similar agenda and stakeholders to make this dream a reality.