What is Cerebral Palsy?
Cerebral palsy (CP) is the most common cause of childhood disability. Cerebral palsy literally means ‘brain paralysis”. The child has had some kind of damage to their brain whilst their brain was still growing and developing. This damage mainly affects the parts of the brain that control movement. All children with CP have difficulties moving because the messages that the brain sends out to the muscles to tell them what to do are disordered and confused. This includes the muscles used for eating, drinking and talking, which is why many children with CP have difficulty with eating and drinking, and their speech is not clear.

Almost all children with CP have associated problems as well. These include learning or cognitive problems, epilepsy, and visual and hearing problems. There is no cure for CP. The brain damage is not progressive, but there is no surgery, medication or procedure which can heal or “fix” the damage. Children with CP rely on rehabilitation therapy (physiotherapy, occupational therapy and speech therapy) to help them to reach their maximum potential.

What is the situation of children with CP in
rural South Africa?
Children with cerebral palsy living in poor and rural areas in South Africa are a particularly neglected and underserved group. Although they qualify for government assistance in the form of “Care Dependency Grants”, this money is usually the family’s only source of income and not all the money is spent on the child. Caring for a child with cerebral palsy involves many additional costs not associated with non-disabled children such as frequent trips to clinics and hospitals, special food, and disposable nappies/diapers. The children remain dependent on their mothers for feeding, bathing, dressing and toileting, placing a heavy burden of care on mothers. Mothers report feeling isolated, lonely and depressed in coping with day-to-day living. Families and caregivers have little or no access to support services, such as peer support groups and networks.

Studies have shown that less than 30% of children who need rehabilitation in South Africa actually receive it. Not only is transport to the hospital costly because of the distances involved, but once people get there they find that there are not enough therapists to help them, and the therapists may have little or no experience in working with children with cerebral palsy. In addition, a lack of financial resources at the hospitals means that there are long waiting lists for basic equipment such as wheelchairs, buggies and standing frames. As a result children up to the age of 14 years are still being carried on their mothers’ backs.