Since the Empowerment and Disability Inclusive Development (EDID) program was created in 2014, the CBC Health Services as a Strategic Partner Organisation of the Dutch-based Liliane Foundation has worked with partner organizations in eight regions of the country to enable children and youths with disabilities from 0-25 years have access to education, health, social and livelihood opportunities. The program also makes sure that an enabling environment is provided for children with disability in their families, communities and the nation at large.
The EDID program has embraced a new strategy in the management of Cerebral Palsy called Support Tools Enabling Parents (STEP). This strategy developed by the Liliane Foundation is also being piloted in Uganda, Kenya, and Tanzania.
Cerebral Palsy is a physical disability that affects movement and posture. It is usually due to damage to the developing brain either during pregnancy or shortly after birth. It affects children in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture, and balance. Although Cerebral Palsy is a lifelong condition, some of its signs can improve or worsen over time. Children who have Cerebral Palsy may also have visual, learning, hearing, speech, and intellectual impairments and epilepsy.
With STEP, CBR field workers are trained not only to dispel the many myths that still surround disabilities in the communities, but also to help improve the functionality of children having Cerebral Palsy by coaching the parents through simple practical skills to manage this condition.
EDID Program Manager, Mrs. Agho Glory, says, before now parents would take their children with Cerebral Palsy to rehabilitation centers with very high and unrealistic expectations, which revealed their ignorance about the condition. “Compared to taking children with Cerebral Palsy to rehabilitation facilities with little or no results, with STEP, CBR field workers are empowered to effectively simplify the understanding of the condition for parents who can, in turn, participate in managing and realizing improvements in the lives of their children,” explains Mrs. Agho.
“When parents go to rehab centres with their children who have Cerebral Palsy, most often their one big goal is only to see their child walk, and when this is not happening fast enough, they are disappointed. They don’t understand that the child’s ability to walk depends on the communication that goes on in the brain, and since children with Cerebral Palsy have some parts of their brain damaged, it may take a longer time for the brain to ever process the information to enable the child undertake all the activities that will eventually lead to walking.
STEP ensures that the management of a child with CP is broken down into small steps. For a child to walk, that child has to learn to sit, then crawl, before standing and walking. Apart from these, the child also needs to eat & drink well, learn proper toileting and communication skills; be able to play and interact with other children etc. These are all little things which children with CP find difficulty accomplishing and they need to be trained on how to do all these. When goals are set around these areas and parents are coached on how to accomplish them, the parents appreciate the progress being made,” expatiates EDID Program Manager.
The Supervisor of CBC Health Services’ Physiotherapy Department, Mr. Fanfon Timothy, on his part, says the STEP Project, though at its early implementation stages in Cameroon, is proving to be an effective way of managing Cerebral Palsy.
“We are now seeing more Cerebral Palsy children as we meet them in their homes and empower their families with basic skills to assist children. This has made providers more effective in managing the condition,” says Mr. Fanfon.
Families of children with Cerebral Palsy are finding hope and believing in a bright future for their children with the STEP interventions. Raphael Sonkeng is one of such children. He is four years old and is the first in a family of two children. Before the CBR field worker started seeing Raphael at home “he was not able to sit by himself, and when he tried, his forehead was touching the ground; he could neither talk nor walk, couldn’t control nor raise his head up.”
Raphael’s mother had a prolonged labour. Two days after his birth, he developed a high fever and was diagnosed with meningitis. At five months, Raphael could not do things infants of his age do. He was taken to the hospital where a C-T Scan was done. It was realized he had brain damage, probably due to lack of oxygen during prolonged labour.
When the field worker met with Raphael’s family, his mother wanted her son to sit normally, walk and talk. The field worker explained to her that they will have to set little goals at a time.
After fifteen weeks of work, Raphael’s mother confesses, “I see improvements, they are not very big, but my son’s life is visibly changing; he is now able to sit in a chair for long; I’m happy to be involved in his care and understand his condition more; this helps me to be patient and better appreciate any feat he attains.”
Like Raphael, close to ten thousand children have benefitted from CBR interventions since 2015 in communities across the eight implementation regions through the EDID Program.
Also, thousands of families of children with disabilities have been sensitized on the right attitudes towards disabilities, while more than 1200 children have had corrective surgeries for various mobility impairments and are reacting positively to rehabilitation.
This is clear proof that Cerebral Palsy, alongside other disabilities, is not a death sentence as opposed to the general perception in most communities. With appropriate assistance, children with this condition can live to fulfill their dreams like other children.