Wilhemina Senne has her hands full caring for her 20-year-old disabled daughter Metsiatsele.
Metsiatsele has Prader-Willi syndrome (PWS), a rare genetic disorder affecting one in 15,000 people and resulting in severe learning and behavioural problems.
Despite the debilitating disorder, Metsiatsele has been unable to get a permanent Social Security Agency (Sassa) disability grant because the agency doctor who processed her application said the disease did not inhibit her from being able to work and she might grow out of it.
But experts on the condition say it is permanent and that there is no way anyone who has PWS could hold down a job.
Ancella Ramjas, national executive director for Down Syndrome SA, said the Down syndrome community, including her daughter Thameez Ramjas, 22, had experienced similar treatment at Sassa.
"It has been a nightmare. My daughter was given temporary [Sassa disability] grants . But last year our application was denied. The doctor told us we must come back this year because she may have grown out of the syndrome by then."
Melanie Lubbe from the South African Disability Alliance said the situation was so severe the organisation was going to host a Gauteng workshop with Sassa officials later this month to address it.
"The whole disability sector is having severe problems with Sassa . [these cases are] a classic example of absolute lack of knowledge."
Sassa spokesperson Kgomoco Diseko said the complaints were unusual because "there are people who have HIV who were able to work and received a grant". He said he could not comment on the specific cases. "It would depend on the extent of the condition."
Diseko said the rejection rate for disability grants was about 30%.
"It is important to note that what is assessed is the impact of the impairment on the ability to work, and not the nature of the impairment.
"The mere presence of a chronic condition does not necessarily warrant the awarding of a disability grant," Diseko said.
Paediatrician Dr Engela Honey, who has known Metsiatsele from birth and motivated for her permanent disability grant, works with children with genetic defects and severe disabilities.
She expressed her frustration over this case and "many other adult sufferers of debilitating disorders [being] told they would grow out of their disorder".
NOT CAPABLE
"This [Sassa] doctor is not capable of doing her job . [Metsiatsele] received the grant until she was 18, then she had to get a disability grant . which she received for two years, having to reapply each year," Honey said.
"Now in the third year she has been denied. She should have got a permanent grant. The syndrome doesn't have a cure and there is no treatment. [The doctor] asked her [Metsiatsele] 'Are you OK?', she says 'Yes' and on that basis she doesn't qualify for a grant.
"She [the doctor] is a GP and not a specialist, so she won't know every disorder. But then why not pick up the phone and ask? Why would I motivate for a grant if [Metsiatsele] didn't need one?
Meanwhile, the Senne family live hand to mouth on a R840-a-month grant given by Sassa to Senne's other two healthy children.
One of the side-effects of PWS is insatiable hunger.
"I have to watch her all the time. She doesn't often steal but she always begs money to buy food . It doesn't matter what it tastes like - she will eat it," Senne said.
Ramjas said: "The reality is that Sassa officials do not understand disability issues. They might understand the diagnosis but have no idea of the challenges and the impact that the disability has on a person or family."
Kelly du Plessis, founder and CEO of Rare Diseases SA, said: "Sassa really needs to become educated and needs to be able to refer back to the doctors who put their patients forward.
"The disorder is not curable . Most sufferers will have an IQ of between 40 and 60 and children born with PWS are at a serious disadvantage. Sassa will be hard-pressed to find someone to employ these people."
Honey said an application for a one-year-old child diagnosed with Down syndrome and suspected glaucoma had been rejected by a Sassa doctor last May, who said he could see nothing wrong with the child.
There was also a misunderstanding over what age a child had to be to qualify for a grant.
"I have just seen a baby at Witbank hospital who was born with a cardiac lesion and Down syndrome," Honey said.
"The child was denied a Sassa grant because the doctor said she needed to be one year old to receive a grant. Meanwhile this child is going to die without money for proper care. I've had patients denied a grant because doctors say they need to be of school-going age. Some patients of mine have received grants at birth - it all depends what doctor they get."..