Lobby urges more support for special needs kids hidden by parents

The Coast Association for Persons Living With Disability made the call after it emerged that many parents in Mombasa were still hiding their special needs children because of shame and stigma.

The lobby said it was wrong for parents to feel ashamed of their children. The parents should instead seek help early enough for them to boost the children's quality of life, it said.

The organisation’s executive director, Hamisa Zaja, said the government must start a serious campaign to sensitise parents with special needs children on the importance of showing them love.

“Don’t hide your children. They are a special gift from God. Some have abilities that abled children do not have but these abilities will only be realised if they are given an enabling environment to live in,” Zaja said.

She spoke at Sayyida Fatimah Hospital in Mlaleo, Nyali subcounty, where her organisation, Dear Diaries Initiatives Kenya and Aisha Foundation donated assistive devices worth more than Sh250,000 for the hospital’s therapy department.

Aisha Foundation founder Mwanaisha Chiku said sometimes the problems the hidden children suffer from are minor and can be managed with medical attention.

“You find that a parent hides a child yet if [the condition is] managed early enough, the children lead normal lives. They just deny the children a chance at normal life,” she said.

She said most of the special needs children they deal with suffer from cerebral palsy. These children, she said, require a lot of physical therapy.

However, she said, there are not enough equipment and facilities in Mombasa, forcing parents to travel long distances to the Coast General Teaching and Referral Hospital for the therapy services.

The long distances, the costs involved and the struggle to take the special needs children to the CGTRH for therapy sessions discourages many parents, thus curtailing their progress.

“Most of the parents are single and do not have regular jobs. It is thus hard to cope with taking the children to CGTRH regularly and some give up altogether,” Chiku said.

She said it is important to devolve the therapy services to health facilities near the children to cut costs.

Chiku and Zaja called on the government to step in and help the special needs children access health services easily.

“To date, this sector that involves care for persons living with disability has not been devolved in terms of access to healthcare,” Zaja said.

She said that physiotherapy facilities should be established up to the ward level so as to eliminate the need to travel long distances to access therapy services.

She said most physiotherapy services are centralised in specific areas, making it difficult for those living in remote areas to access the services.

“Sometimes parents lack fares to take their children for the sessions. And when they finally get the fare, there are few special needs health practitioners, meaning hospitals can only take in a certain number of people a day,” Zaja said.

For instance, a facility may only be able to serve 10 special needs children a day, but 50 turn up for the services. It means 40 will have to go back and come the next day.

“Sometimes parents give up because of the wasted fares they used to travel to Coast General but still did not get the services they sought. It discourages them,” Zaja said.

She also said the government should consider reducing taxes on the special needs equipment or even exempt them from tax altogether.

This, she said, will encourage more organisations to import equipment that will go a long way to helping the special needs children in therapy sessions.

She said due to inflation, prices of equipment have gone up tenfold and this discourages people willing to donate the equipment to special needs facilities.

“Equipment that we used to buy at Sh150,000 now go for up to Sh250,000,” she said.

Said Abdalla, who has a cerebral palsy son, said it is hard raising a special needs child.

“It needs a lot of patience and heart. It is not easy. It is a difficult examination from God,” he said. 

“If you are not strong-willed, you can easily abandon your child or even throw them away. Husbands can easily abandon their wives because of the special needs children.”

He called on the government to look into ways of helping parents with special needs children and help create better spaces for the children.

He said therapy facilities are few and far between and many parents cannot afford to take them to these therapy sessions regularly.

Some require daily therapy session, he said. 

“That comes with a huge cost,” he said.

He said school facilities for the special needs children are also few and not well equipped in terms of both personnel and equipment.

“Parents with specials needs should not give up. We need to stay strong and encourage each other,” he said.

Sayyida Fatimah Hospital administrator Hannah Adam said though they are a level 4 facility, they are a community hospital that thrives with collaboration with partners to help the community members.

The hospital gets an average of five people who need therapy services daily but the number shoots to more than 20 on Saturdays, a special day dedicated for physiotherapy.

“Our major challenge was therapy equipment but now that we have received these, I have a new challenge of finding a bigger space for them,” she said.

Mlaleo assistant chief Zubeda Farid said the government has a way to help parents who cannot afford therapy services for the special needs children.

“So, there is no need to hide them. The fee is affordable, at about Sh150 per session and if this is hard for you, we can also work out a way,” she said.

She said it is unfortunate that some parents do not count their special needs children when the government conducts an activity that requires one to account for the children they have.

“Last week, during the registration of children for the treated government nets, some parents who had five children, said they have only four just because one of them has special needs,” Farid said.