Paediatrician Dr Nomlindo Makubalo
In the well-supported event on the University’s Missionvale Campus on Friday 28 March, Dr Makubalo, also a staff member at the University’s Medical School, stressed the need for improved support systems for individuals with Down syndrome, a genetic condition affecting up to one in 500 births each year in South Africa.
Numerous families attended with their Down syndrome children, along with NGOs working in this field, sharing their challenges – as well as joys – in the interactive morning.
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,” said Dr Makubalo.
Highlighting gaps in healthcare, education and employment, she called for better collaboration and coordination between sectors.
“We need to be inclusive; there is a lot we can do to help Down Syndrome individuals reach their full potential,” she said.
“No one should be left behind irrespective of chromosome numbers: end the stereotypes and don’t stigmatise us.
“We need 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.”
The lecture was part of a collaborative initiative between the University, the National Research Foundation, and the South African Agency for Science and Technology Advancement (SAASTA). The Faculty of Science and the Faculty of Health Sciences co-hosted the event, working with Dora Nginza Hospital clinicians and local NGOs.
Parent Liseka Tshula, left, attended with her daughter
Government responsibilities and gaps
As a District Clinic Specialist Team pediatrician, Dr 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 Department of Health, South African Social Security Agency (SASSA), Department of Social Development, Department of Education, and the Department of 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. However, families often had to make multiple trips, delaying care which caused unnecessary stress and expense.
Challenges in education and employment
Dr 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.”
The lack of 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.”
Senior Director: Missionvale, Bird Street and Second Avenue Campuses Sharon Masiza gets to know one of the little visitors
SASSA grants and access to services
Dr 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,” she said.
Call to action
Dr Makubalo issued a call to action:
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Improve interdepartmental collaboration.
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Transform systems to be inclusive and responsive.
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Shift societal attitudes to look beyond disabilities.
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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.
Medical School Director Dr Reno Morar gets into the spirit of the day; ; SAASTA representative Simon Rametse; Medical School students and staff played with the children during the panel discussions; and Engagement Office Director Dr Bruce Damons, right, with families at the Down syndrome event
SAASTA representative Simon Ramtetse emphasised 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.
Following the lecture, Mandela University Medical School Director Dr Reno Morar facilitated a discussion, with the University’s Engagement Office Director Dr Bruce Damons leading an open forum with parents and caregivers.
University staff and students played with the children while parents and caregivers used the nurturing space to share their experiences.
Despite the challenges, the event left attendees hopeful.
“They gave us a lot to think about,” said Titus, whose little girl is five years old. “I’m hoping that things will change for our kids in the future.”