Liseka Tshula (left) with her daughter. Photo: Zama Baleni
“We need to be inclusive; there is a lot we can do to help Down syndrome individuals reach their full potential.”
These are the words of Gqeberha paediatrician Nomlindo Makubalo at a public lecture hosted by Nelson Mandela University to mark World Down Syndrome Day.
Numerous families and their children participated in the interactive session.
Makubalo stressed the need for improved support systems for people with Down syndrome, a genetic condition affecting up to one in 500 births each year in South Africa.
She emphasised how crucial inclusion, early intervention and support systems were: “Monitoring and implementing policy is critical to ensure that no one is left behind.”
Highlighting gaps in healthcare, education and employment, she called for better collaboration and coordination between sectors.
“No one should be left behind irrespective of chromosome numbers: end the stereotypes and don’t stigmatise us.
“We need a mind shift, attitude and behavioural changes to look beyond the chromosome or disability. Let us create an inclusive welcoming environment for children with disability: with us and not for us.”
As a district clinic specialist team pediatrician, Makubalo is known for her work in child healthcare with innovative programmes, HIV care improvements and rural training. She emphasised that government obligations stretch beyond policy to tangible actions.
One key area to improve was coordinated support between the South African Social Security Agency (Sassa) and the departments of health, department of social development, education and women, youth and people with disabilities (DWYPD).
In an ideal world, a child with Down syndrome should receive all necessary medical interventions in one visit, she said. But families often had to make multiple trips, delaying care which caused unnecessary stress and expense.
Makubalo questioned whether inclusive education policies were effectively implemented.
“How many of the children here are not in school? How many wait until they are 10 years old before being admitted? Even in mainstream schools, they are often placed at the back of the classroom, receiving no real support,” she said.
“We have a right to schooling and dignity. Call us by our names.”
Limited employment opportunities was another pressing concern.
“Have you ever seen an employee with Down syndrome working in a supermarket?” she asked. “Where do they go after they turn 18? Many are functional adults, yet they disappear from the workforce. The DWYPD must ensure that companies create jobs for them.”
Makubalo also highlighted how families were entitled to a Sassa grant from the birth of a child with Down syndrome.
“Previously, the grant was only available from one year old. This changed through advocacy, but more needs to be done. No caregiver should wait a year for financial support,” she said.
“Early childhood development is critical so delays in accessing therapists and learning centres hinder progress.”
Marsha Titus, a parent attending the event, echoed these concerns. “We need more help with learning centres. Schools in our area [Sanctor] have over 40 students per class, leaving no space for individual attention. The waiting lists for speech therapy and psychological support are too long.”
Makubalo issued a call to action:
- Improve interdepartmental collaboration;
- Transform systems to be inclusive and responsive;
- Shift societal attitudes to look beyond disabilities; and
- Ensure policy implementation is monitored and enforced.
“It’s just an extra chromosome; we are not different,” she said, reinforcing the importance of awareness and acceptance.
Simon Rametse, of the South African Agency for Science and Technology Advancement, underscored the importance of science literacy in building an inclusive society.
“We partnered with Nelson Mandela University because universities with medical schools play a crucial role in public engagement. We need to ensure people understand the science behind these conditions,” he said.
After the lecture, Nelson Mandela University’s Medical School director, Reno Morar, facilitated a discussion, with the university’s engagement office director, Bruce Damons, leading an open forum with parents and caregivers.
“They gave us a lot to think about,” said Titus, whose girl is five years old. “I’m hoping that things will change for our kids in the future.”
Gillian McAinsh is a freelance writer and editor. This article was issued on behalf of Nelson Mandela University.