My project is all about empowering mothers (Parents) of children with cerebral palsy to make them advocates. I have attached the project’s proposal to enable you understand it better. I am happy to be on board.
SPECIAL MOTHERS PROJECT PROPOSAL ON CEREBRAL PALSY ADVOCACY
The Special Mothers Project (SMP) is an advocacy and awareness programme on cerebral palsy. Cerebral Palsy is described as loss or impairment of motor function, Cerebral Palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth. Cerebral Palsy is damage to the brain that cannot currently be fixed. Treatment and therapy help manage effects on the body. The injury and damage to the brain is permanent. The brain does not “heal” as other parts of the body might. Because of this, the Cerebral Palsy itself will not change for better or worse during a person’s lifetime. On the other hand, associative conditions may improve or worsen over time.
As a result of the permanent nature of cerebral palsy and the fact that most children are treated as outcasts the project seeks to create awareness while advocating favourable policies for families who have children with cerebral palsy. The project also seeks to coordinate cerebral palsy related activities in Ghana and serve as a peer counseling platform for mothers of children with cerebral palsy.
The project uses the media (Both social Media and Mainstream media) to create awareness about Cerebral palsy related activities while drawing the attention of policy makers to issues that need to be addressed.
Even though SMP started operations around July 2015 it was officially given the certificate of incorporation and certificate to commence operations on 31st March 2016 by Ghana’s Registrar-General’s Department
The aim of the project is to enhance the mother’s skills in handling the children with cerebral palsy and get other necessary information that they need to help the children grow to their full potential as well as empowering mothers especially for advocacy.
It must be noted that children with cerebral palsy cannot advocate for themselves due to the fact that most of them may not be able to have a clear speech and may not be walking and talking, hence the need for empowered mothers who can advocate for them
It must be noted that these children spend more time with their mothers than any other person and equipping the mothers also means enhancing the child’s opportunity to a better life.
Such Training will be in the form of a one-stop workshop where the Specialists will take the Mum’s through the basic skills in handling their children and it will be an opportunity for the mothers to ask all the needed and necessary questions that need to be answered.
Looking at the limited number of pediatric physiotherapist, the Special Mothers project is proposing that these mothers are trained as para-physiotherapist to enhance the job of the professionals. Ultimately the Project also seeks to influence policy on children with cerebral palsy: with regards to education, health care, acceptance in society among others.
The Special Mothers project also hopes to facilitate services that will enhance the lives of children with cerebral palsy and their families. Such services include adopting and promoting centres where mothers can drop of their children with cerebral palsy to enable them go and work to earn a living. It must be noted that the Special Mothers Project would like such centres to be inclusive thus children on the streets could also be admitted to such centres for training.
The Centres will also serve as a resource centre for the Special Mothers Project where mothers of children with cerebral palsy with the needed funding could train in some small and medium scale ventures such as soap making, batik tye and tye and beads making.
The Special Mothers Project’s vision is to create awareness about cerebral palsy and point families of children with cerebral palsy to available services in Ghana.
The project also seeks to empower the mothers with basic handling and management of a child with cerebral palsy.
This is done through training workshops for parents/mothers with the basic physiotherapy skills and encourages parents to share vital information.
The workshops also serve as a skill learning platform for parents and a networking opportunity to meet other mothers/families with children with cerebral palsy.
The project also hopes to create awareness among teachers, health professionals, community based rehabilitation workers and policy makers by engaging them in workshops.
The Special Mothers Project will work closely with the Department of Social Welfare and the Special Education Unit of the Ghana Education Service as well as other identifiable stakeholders.
Many Children diagnosed with Cerebral Palsy end up being killed! They are sometimes referred to as “children of the river god” or snakes and their parents are advised to kill them by dumping them into a river or leaving them in the forest. The parents are easily convinced to do this because our society shows serious stigmatization towards such children. Many educational institutions shun them, denying them their right to basic education.
These children are not treated well in most health facilities and they are just seen as a curse on families. Mothers are left to be frustrated with these children and they tend to hide these children till they die.
The fact is that killing a child with cerebral palsy becomes the easiest option for many parents, it looks like society has no place for them and many parents do not see a bright future.
Meanwhile these children that is children with Cerebral Palsy given the necessary help can not only reach their full potential but also have an impact in society and the world. It must be noted that children with Cerebral Palsy are most of the time intellectually able to learn anything. They are able to think abstract and early interventions could help them have a relatively better life. Mothers are the main focus in this project, most mothers with such children get depressed, many are persuaded to think that it is the devil that has attacked them and end up moving from one prayer camp to another or from one shrine to another looking for help.
In such situations, empowering the mothers also means empowering the child
Eventually these mothers do not do anything concrete to help their children. The Special Project believes that once the mothers are empowered, they will be better positioned to help their children live relatively better lives.
Hence the Reach Out to mothers to encourage them to share their stories and train them to give their children the basic therapies they need to enable them practice at home with their children.
WORKSHOPS SO FAR
In the year 2016, the Special Mothers Project partnered with two organizations: Sharecare4u and Multikids Foundation to organize workshops for mothers.
Both workshops attracted about 30-35 mothers/parents of children with cerebral palsy.
Multikids Foundation has promised to hold a quarterly workshop for parents.
The first workshop organized in collaboration with shareare4u with support from Diligent Care services and the Accra Physiotherapy Centre was held on 2nd July 2016 while the second workshop was held in collaboration with Multikids Foundation was held on 1st October 2016.
Subsequently the project has had series of workshops and meetings with especially mothers of children with cerebral palsy
Moving forward the project will not only want to have workshops for parents but teachers, owners of Day care centres, staff of the Department of social welfare, day care attendants, health professionals. The Special Mothers Project is also looking at having a consistent airtime in mainstream media where families will have the opportunity to share their struggles and their successes with the general public and link to how policy could be implemented to ease the burden of parents especially mothers.
This will enable us win empathy from the general public to support our cause.
WORLD CP DAY CELEBRATION: - The Special Mothers project coordinated with organizations like the CBM/Presbyterian Health Services, Cerebral palsy Ghana and Centre for Employment for Persons with Disability to organize the World CP day on the 5th of October in Dodowa. It is worth to note that the celebration of World CP day had not been celebrated on a big platform as it was celebrated this year in Ghana. Let me give a special mention to Nana OyeLithur, Minister of Gender, Children and Social Protection for gracing the occasion
Since then the Special Mothers Project has been a major coordinator of the World Cerebral Palsy Day Celebration in Ghana
The project will use workshops for various groups and stakeholders to galvanize support for policy change.
Ghana has launched the inclusive education policy, however, in terms of implementation, there is the need for further effort to ensure full implementation, for example, the government system does not take children lower than age six (6) into primary schools.
Unfortunately children with cerebral palsy are usually refused admission into the crèche system which is usually run by private /non governmental bodies, hence very little can be done in terms of getting children with cerebral palsy into the crèche system.
Where they are accepted parents are either required to accompany and sit through school hours with their children or provide a care giver which attracts extra charges.
Other schools accept children with cerebral palsy only on condition that the parents pay much higher than the school fees an average child pays, this mean that parents with limited income cannot get their children into school meanwhile having a child with cerebral palsy requires extra income to support in terms of seeking therapy etc
And yet in many cases one of the parents usually the mother is forced to abandon career to take care of the child which brings a lot of financial constraint on the family.
In addition to this, it seems there is very limited knowledge even among health professionals on cerebral palsy and this hinders information about the condition to parents, most parents are thus forced to seek spiritual and herbal treatment instead of gaining the necessary and needed knowledge and understanding to enable them efficiently manage their children with cerebral palsy.
Sharing knowledge between parents, health professionals and educationists will go a long way to facilitate understanding of the real situation and possibly dialogue on the various approach to lessen the burden on the parents.
Therefore various workshops with the stakeholders on the current situation and a jaw-jaw on the best way to practically include children with cerebral palsy into the social system is a first step towards achieving a practical inclusive policy in Ghana.
Talking to church groups and other social groups to create awareness and understanding of cerebral palsy while winning empathy from society
A slot for a media programme where families raising children with cerebral palsy specifically and other special needs in general share their stories linked with policy where we point out the gaps in existing policy, suggest ways in which such gaps could be filled and spur development in that direction.
The project has adopted a government Special/unit in Madina school for upgrade to enable children with cerebral palsy have access to education. The School when operational will be used as a resource centre and a place where parents who live can safely take their children to enable them go and work.
The schools is also training student is the Appropriate Paper Technology (APT) through one of the Mothers, who is a technical drawing teacher and has had the opportunity to learn the APTs
The project is currently facilitating centres for children with cerebral palsy by promoting such centrres and work together to enhance their work.
The Special Mothers Project hopes to adopt about three of such centres in the Greater Acrra region and encourage the setting up of many more across the country.
It must be noted that the project will not primarily run such centre but will work to facilitate the work of such centres
The project is also ready to partner schools that are ready to accept children with cerebral palsy by providing practical training for teachers and where possible facilitate the employment of at least two mothers as para-professionals to assist in the care giving
As part of facilitating the work of such centres, the project is planning on engaging two mothers as care givers to support the special education teachers in such centres to serve as a motivation for the teachers.
The project would also support therapy services in such centres to make it one stop centre where quality care is assured.
This will enable mothers in the vicinity to be able to drop off their children with Cerebral palsy in the school and pick them in the evening.
As it is now, many mothers with children who have cerebral palsy are forced to abandon career or work and stay home to take care of their children. This puts a lot of financial constraints on such families.
The Special Mothers Project will also facilitate the training of mothers in various crafts with the intention of helping mothers to set up small enterprises which can be operated at home, for example training mothers in beads making, soap making, will help the mothers to earn an income while at home.
The Project will also train them to use online marketing tools to market such products while making contacts with various supermarkets that can accept and sell these products for them
The Project’s major challenge has been dedication from mothers. Many mothers have become apathetic, probably given up on their children with cerebral palsy and are not so sure whether policy change is possible.
The project started as an online advocacy and communication is done mainly through whatsapp, therefore it is difficult getting information to mothers who are not online or do not use the whatsapp platform.
Many Mothers are unable to attend meetings due to financial constraints which forces the project to take information to their homes, making it expensive
We count on your funding support without which all these beautiful plans remain on paper
Mrs Hannah Awadzi
Special Mothers Project