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Home-based programme empowering parents of children with Down syndrome

20 October 2025 | Story Andre Damons | Photo Supplied

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

UFS responds to concerns around high costs of higher education

2015-10-15

Dear Students

UFS responds to concerns around high costs of higher education

There is an understandable and shared concern among students in the country around the high costs of higher education. As you know, this also is a matter of deep concern on our campuses, which the University of the Free State (UFS) has made a priority in discussions with student leaders - and through new strategies to relieve the burden of costs on poor students and their families. In fact, in the past two weeks, the UFS leadership has again engaged students on the matter of fees in the future.

This is what we have done so far. We have maintained our position as one of the universities with the lowest tuition fees in the country. As you would have seen from recent newspaper reports on the cost of a degree at various institutions over the past five years, the UFS has had consistently low fees. This is not an accident; both the University Council and the executive leadership of the UFS is of one mind that we must offer a high quality education at minimum cost to all our students, despite the rising costs of operating a large multi-campus university with 30 000 students. Our commitment to you is to continue to keep those costs to students as low as possible, without compromising on the quality of education.

In addition, we took a decision earlier this year to become the first university to drop application fees for first-year students. We are proud of that achievement, since so many students fall at this first hurdle as they contemplate post-school education and training. We also waived registration fees for postgraduate students and now Research Master’s and PhD students can study tuition free under certain conditions. We raised more than R60 million from the private sector to enable talented students, who do not receive NSFAS funding, to complete their degree studies at the UFS. We set aside some of the university’s own funds to enable even more students to access finance for their studies. And we now have a special office set aside to counsel and assist students to apply for more than one scholarship to support their studies. The university does not follow a policy of maximizing exclusions. It has endeavoured and succeeded to turn around the majority of its potential deregistration cases. During 2015 we had 2 700 students at the risk of being de-registered, but our serious efforts resulted in only over 200 instances of exclusion we could not mitigate. As is the practice for the past few years, these students’ debt for 2015 has been reversed.

But, we do not only look for funds from outside to support our students. Last year we set up a Staff Fund to which ordinary members of the academic and support staff can contribute from their own, and sometimes very modest, salaries to enable Kovsie students to finish their degrees. We have volunteers who work on the No Student Hungry (NSH) Bursary Programme to raise funds for students who cannot afford a regular meal. We have an open line to rural and township schools to nominate poor students with good results for support by the Rector’s Fund, and some of those students are now in their final year of studies. And many of our staff support individual students in their homes and with their families, without being asked to do so. This is what we call the Human Project and it remains central to the way in which we deal with students.

We will of course continue to make representation to government, the private sector, and individuals to increase funding, especially for first-generation students, and for families where more than one student is at university. We will continue to take to the road to raise funds from companies and foundations to finance our students. We will expand on-campus opportunities for limited working hours for students who wish to earn some money to support their studies. As we have said often before, no student who passes all their courses or modules will be turned away simply because they do not have the funds to study.

The UFS discusses and agrees to fee increases with our students well in advance of the next academic year. None of these decisions are taken without the agreement of the student leadership and thus far these engagements, while tough, have always been done in good faith and with the students’ interests at heart.

It is important for you to know that, with the declining government subsidy, in real terms, and the expanding needs of our students, we will not be able to keep the university running without fees - even though this source of revenue comes mainly through scholarships and bursaries. We need to compensate staff, purchase new library books and renew journal subscriptions (which is very difficult given the low value of the Rand), upgrade computers and software, pay rates and taxes, purchase laboratory equipment, pay the water and electricity bills, expand internet services, upgrade campus security, and hire more academics to keep class sizes reasonably small. It is important for you to know that the university has managed to avoid increasing student fees as a result of much higher municipal rates. Our lecturers are not the highest paid in the country and financially we run a tight ship. We consistently achieve unqualified audits and we are known to be one of the universities that manage its NSFAS contributions with great efficiency. We do this because of our commitment to ensure that our students are able to enjoy a high quality of education on a stable campus where there is a deep respect for all campus citizens.

Despite all these efforts, the most important message we wish to communicate, is that the door remains open for continued discussion with student leaders as we continue to find ways of keeping university education open and accessible to all qualifying students. At the same time, the UFS leadership is involved in discussions with government about how to best manage the escalating cost of higher education for our dents.

Thank you for your support and understanding at this time and be assured, once again, of our commitment to students as a matter of priority to the university leadership.

Best regards

Prof Jonathan Jansen
Vice-Chancellor and Rector

University of the Free State
19 October 2015

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