Sorry, Sassa doesn’t know what Down syndrome is
Officials temper this startling admission by vowing to teach their staff about this and other disabilities
Ilize Wolmarans was in tears as she spoke of her frustration in trying to get a disability grant for her 18-year-old daughter with Down syndrome.
She told a panel of people from various disability sectors, disabled persons and South Africa Social Security Agency (Sassa) officials that her daughter was twice denied a grant by a Sassa official who allegedly said her daughter would never receive a grant because “nobody knew what Down syndrome was”.
Stories like this prompted the South African Disability Alliance to hold a disability sensitivity workshop at the Autism SA offices in Johannesburg on Tuesday.
Members of the workshop gasped as Wolmarans spoke about being told her daughter “wasn’t disabled enough” and that she could “grow out of the disease”.
Sassa officials admitted to not knowing about Down syndrome, but ensured the panel they would be training their staff in sensitivity towards disabilities.
Sandy Klopper, director at Autism SA, chaired the meeting.
Most disability recipients will receive one of two types of grant: a care dependency grant for children under 18, and a disability grant for 18- to 59-year-olds.
Both are subject to a means test, so a Sassa-appointed doctor must verify the disability.
Cases involving autism, Down syndrome, albinism, the deaf, the blind and people with epilepsy were presented at the workshop.
After a presentation by Ancella Ramjas, national executive director for Down Syndrome SA, Sassa manager Akona Mbombo said: “We as Sassa officials don’t understand what Down syndrome is. We need to understand how to identify it.”
Klopper said she wanted the audience to realise that despite the issues at Sassa, the officials were open and willing to engage with the disability sector, and her experience with the organisation was one of help and support.
Ramjas said the situation was serious and she knew of many Down syndrome sufferers, including her own daughter, who received the same treatment.
She explained that Down syndrome was diagnosed through a blood test and that there was no way that a person with the syndrome could be “cured”.
A person with Down syndrome could also have a number of disabilities, including autism.
Ramjas said that for many poor households the Sassa grant was their only income.
“For many of these parents there is no hope of going to work because they need to be home looking after their children. If they need to go to hospital to see the specialist, that’s money for the taxi.”
She said there was also no consistency regarding when a child was eligible for a grant, with some recipients receiving a grant from birth and others when they turned five, while some parents of affected children were told their children could only receive a grant once they got to school. Mbombo said the grant was for children 0 to 18 years old and there was no exception.
“We took two years to focus on autism and the challenges around identifying if a person gets a grant. We partnered with Autism SA. We have had a few diagnostic and sensitisation meetings because you can’t see it by eye. We’ve taken it upon ourselves to ensure that the environment is friendly for people with disabilities. We need to do the same with Down syndrome,” he said.
Fikisua Mapoma, representing Sassa in the Eastern Cape, said this was the start of fixing problems in the organisation.
“We are just administrators and technicians [who work for Sassa] so we need to train our staff about sensitivity and how to treat people and speak to people with disabilities.
“Our staff is untrained in medical matters and it is unfortunate that they are on the front line, but this is the first step.
“Please bear with us, we are administrators and we are sorry for not being sensitive to the communities’ needs,” she said.