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 SA 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 SA Disability Alliance to hold a disability sensitivity workshop at Autism SA in Johannesburg on Tuesday.
Workshop members gasped as Wolmarans spoke about being told her daughter was not disabled enough and that she could grow out of the disease.
Sassa officials admitted to not knowing about Down syndrome, but assured the panel they would be training their staff in sensitivity towards disabilities.
Autism SA director Sandy Klopper 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 59year-olds.
Both are subject to a means test, so a Sassa-appointed doctor must verify the disability.
Cases involving autism, Down syndrome, albinism, epilepsy, the deaf and the blind were discussed.
After a presentation by Down Syndrome SA national executive director Ancella Ramjas, 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 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 looking after their children.”
She said there was also no consistency regarding when a child was eligible for a grant.
Fikisua Mapoma, representing Sassa in the Eastern Cape, said this was the start of fixing problems in the organisation.
“We are administrators and technicians . . . our staff is untrained in medical matters and it is unfortunate that they are on the frontline, 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.”