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What people with disabilities need more of
On International Day of Persons with Disabilities, Joana Ndebele explains how hard it is to run a centre for disabled children on a low budget
When Joana Ndebele was working as a physiotherapist at the Daveyton Main Clinic in the early 2000s, she noticed that many parents with children diagnosed with Cerebal Palsy and other disabilities struggled to find a specialist school that could cater for their children in Ekurhuleni. The Felicitas School had a waiting list so long that the Principal begged her to open a centre that would care for the children she couldn’t give a place to.
“There was simply nowhere for these parents to take their children. This meant that many of them left them locked up, alone at home while they went to work”, explains Ndebele.
She opened the doors of the Khethiwe Stimulation Centre in 2006 as a registered NPO providing care for eight children with Cerebal Palsy. Ten years later, and the centre has 25 children, including children with profound disability and Autism.
Ndebele explains how over the last 10 years, not much has changed for children with disabilities from disadvantaged communities. On top of the lack of resources, public transport services and facilities that cater to their needs, she says the biggest challenge remains the stigma that is attached to disability.
When disability is seen as a curse
“In my culture, people see it as a curse. Parents are ashamed of having a disabled child often keeping them ‘a secret’ locked in doors. Many fathers run away when they find out they have a disabled child” she explains. “When we try and arrange a taxi to take one of the kids to a doctors’ appointment at Joburg General Hospital, they often refuse to transport a child with disabilities. They are scared of them”.
“Most of our kids come from single-parent households. They are raised by a mother struggling to make ends meet on a small salary”, she says. On top of the everyday challenges of being impoverished and working long hours, these mothers then have to deal with the challenges of bringing up a child with special needs, in a community that outcasts them.
A little support can help achieve a lot
Charging only R500 a month to provide specialist care, meals and love to the children at Khethiwe, shows what can be achieved on a small budget.
“Over and above providing schooling, transport and other services, we need to always grow awareness of how much can be achieved,” says Ndebele. “There is such a big difference in the children after they have been with us a while. Parents have told us we’ve changed their lives. Of course, we also need practical support in what we do. Every bit of help counts.”
One autistic 11-year old boy started at the Khethiwe Stimulation Centre as a five-year old who couldn’t talk and had no toilet training. Today he is one of the liveliest, most talkative children at the centre. “We all jokingly call him the ‘Principal of the School’ because spends so much time reading newspapers” says Ndebele. He is continually active and engaged, much to his parents’ joy.
Sage Foundation is a key supporter of the Centre and has supplied an extra container classroom to help with the space challenges faced, as well as a sustainable vegetable garden to provide fresh produce for the school and skills development initiatives.
“We previously had to have all the children with their different disabilities in one classroom, which wasn’t ideal” says Ndebele. “Now that we have an extra classroom donated by Sage, we can better give them the specialist care and education they need”.
If it can gain additional support similar in nature throughout the year, the Khethiwe Stimulation Centre stands every chance of expanding its reach, along with its impact on the lives of East Rand families facing up to the twin challenges of disability and poverty.
“Organisations like Khethiwe Stimulation Centre desperately need the support of ordinary South Africans as well as the private sector. They are making a huge impact on people who need it the most in South Africa, suffering multiple societal disadvantages” says Joanne van der Walt, Sage Foundation Manager for Africa at Sage.