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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability. 

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential. 

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context. 

 

Empowering programme 

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.  

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says. 

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains. 

 

Feedback from parents 

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do …  she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.   

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before …  as a mother of a Down syndrome baby – but for any mother …  I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot …  my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …” 

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.  

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq. 

News Archive

"Service" needs to return to public service
2010-09-14

At the memorial lecture were, from the left, front: Chris Hendriks, Proff. Liezel Lues, Chris Thornhill and Lyndon du Plessis; middle: Prof. Hendri Kroukamp, Mss Alet Fouche, Lizette Pretorius; and back: Proff. Koos Bekker and Moses Sindane.
– Photo: Stephen Collett.

There is a serious need for the concept of “service” to be reintroduced to the public service. In addition to this, public servants need to behave ethically and honestly if the public service were to achieve its main aim of service delivery to South African citizens and thereby also restore the trust of citizens in the state.

This was the central theme of the JN Boshoff Commemorative Lecture hosted by the Department of Public Administration and Management at the University of the Free State UFS). The lecture by Prof. Chris Thornhill, emeritus professor of Public Administration and Management at the University of Pretoria, focused on “Administrative and Governmental Challenges: Lessons from the Past”. He drew pertinent parallels with the administrative and governmental practices during the times of Pres. JN Boshoff, second president of the Orange Free State in 1855, and the challenges faced in this regard by the current government and public service.

Prof. Thornhill highlighted important aspects such as globalisation, the environment, public service and democratic government in his presentation.
He said the borders between countries have all but vanished and governments therefore have to carefully consider the effects of globalisation on its domestic affairs. The strength of a country’s currency, for example, was not only determined by how that country viewed or perceived it, but also by the international community’s perception of that country’s political and economic stability. This, in turn, could have serious implications for that country’s investment and economic prospects.

Governments are compelled to attend to the utilisation of its natural resources as these resources are finite and therefore irreplaceable. Policy interventions have to be introduced to decrease or regulate the use of certain natural resources or alternative measures need to be introduced. The example of bio-fuel production in various countries was highlighted.

He said the South African public service is characterised by three debilitating factors, namely the prevalence of corruption, the interference of politicians in administrative functions and a lack of appropriate skills and therefore a lack of commitment on the part of officials. In the municipal sector, for example, 46% of municipal managers have less than one year’s experience and this mainly occurs because of the practice of deployment (the appointment of a person based on political affiliation). An amendment to the Local Government: Municipal Systems Act is currently under consideration, in terms of which municipal managers will be disallowed to hold party political positions simultaneously.

According to Prof. Thornhill this is a step in the right direction, but more needs to be done to neutralise the impact of these debilitating factors in order to restore the credibility of the public service.

On democratic government Prof. Thornhill said the fact that the majority of a country’s citizens elect a political party to power does not automatically make the government capable of governing effectively and efficiently. It is therefore important for the rulers to understand their governing role within a democratic context, but more importantly to act accordingly. It is also important not to centralise power unduly as this could be a serious threat to accountable government. The 17th amendment to the Constitution, 1996, currently under consideration, and in terms of which national and provincial government will be allowed to intervene in local government matters, was highlighted as a case in point.

Prof. Thornhill said it was essential for those involved to sincerely and honestly and ethically deal with the above matters for the public service to overcome current challenges.
 

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