PEOPLE living with cerebral palsy appear to be a forgotten community, with most parents struggling on their own to provide for their children and loved ones living with the medical condition.
On Monday this week, Morate Cerebral Palsy Association of Lesotho founder, Itumeleng Mohase, petitioned parliament to cater for the special needs of this community, arguing the M650 social grant given to people living with disability was not enough to meet the challenges faced by those affected by cerebral palsy .
Ms Mohase, who made the appeal when she appeared before parliament’s Social Cluster Committee, also said Leribe had the highest number of children living with cerebral palsy among the country’s other districts.
Cerebral palsy is a combination of disorders that affect a person’s movement, muscle tone and posture. This condition is caused by damage to an immature, developing brain, most often before birth. It can also occur during and after birth due to circumstances that may cause lack of oxygen supply to the brain.
Ms Mohase told the parliamentary committee that children living with cerebral palsy found it difficult fitting in among the community as they need special care.
“We are conducting research to probe the cause of it because children living with the condition have serious needs and struggle to adjust to a normal environment,” Ms Mohase said.
“We would want to establish a centre with services such as counselling, physiotherapy, a stipend to cater for the basic needs and support for parents because often people perceive them differently and that makes it hard to achieve inclusion.
“When implementing laws, please consider that there is a minority of people with special needs. These people are part of the community, so there is need for inclusiveness. I urge you to make changes where you see that the system is lacking.”
She further told the committee that it was difficult for parents to work because they had to be their children’s primary caretakers, while the medical costs were expensive, further compounding the situation.
“Their health keeps fluctuating and as a result, they need experts to care for them. An ordinary house-helper cannot accommodate such children, hence most parents are forced to abandon their jobs to care for their children living with the condition. In other cases, they reside with their grandparents who are not equipped to take care of them thoroughly.
“Almost all of them are in need of wheelchairs because they cannot sit up straight like normal people. However, the wheelchairs are very expensive and most parents cannot afford them as the cheapest is M20 000.
“The social grant for persons with disabilities is M650, which is not enough and needs to be reviewed because it can only help them get two packets of diapers, for instance,” she said.
She also urged parents with children living with the condition not to hide them but educate communities about them.
In response, a member of the Social Cluster Committee, Mamello Phooko, said nothing was being done to help children living with the condition.
“These children are a forgotten population and it seems when we need to help them, we want to enact laws first. Why can’t they be considered as the responsibility of the government?” Ms Phooko asked.
Another committee member, Mokhothu Mokhelenyane, urged Ms Mohase to draw up a budget detailing the exact amount needed to cater for the needs of people living with cereal palsy, and the committee would take the information to parliament for possible remedy.