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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 agreement on staff salary adjustment of 7.5%

2011-11-10

At this year's salary negotiations were from the left, front: Mr Lourens Geyer, Director: Human Resources; Ms Ronel van der Walt, Manager: Labour Relations; Ms Tobeka Mehlomakulu, Vice Chairperson: NEHAWU; Prof. Johan Grobbelaar, convener of the salary negotiations; back: Mr Ruben Gouws, Vice Chairperson of UVPERSU, Ms Esta Knoetze, Vice Chairperson of UVPERSU, Mr David Mocwana, fultime shopsteward for NEHAWU; Mr Daniel Sepeame, Chairperson of NEHAWU, Prof. Nicky Morgan, Vice-Rector: Operations; Prof. Jonathan Jansen, Vice-Chancellor and Rector of the UFS; Ms Mamokete Ratsoane, Deputy Director: Human Resources and Ms Anita Lombard, Chief Executive Officer: UVPERSU.

Photo: Leonie Bolleurs

Salary adjustment of 7,5%

The University of the Free State’s (UFS) management and trade unions have agreed on a general salary adjustment of 7,5% for 2012.

The negotiating parties agreed that adjustments could vary proportionally from a minimum of 7,3% to a maximum of 8,5%, depending on the government subsidy and the model forecasts.

The service benefits of staff will be adjusted to 9,82% for 2012. This is according to the estimated government subsidy that will be received in 2012.

UVPERSU and NEHAWU sign

The agreement was signed (today) Tuesday 8 November 2011 by representatives of the university’s senior leadership and the trade unions UVPERSU and NEHAWU.

R2 500 bonus

An additional once-off, non-pensionable bonus of R2 500 will also be paid to staff with their December 2011 salary payment. The bonus will be paid to all staff members who were in the employment of the university on UFS conditions of service on 31 December 2011 and who assumed duties before 1 October 2011. The bonus is payable in recognition of the role played by staff during the year to promote the UFS as a university of excellence and as confirmation of the role and effectiveness of the remuneration model.

It is the intention to pass the maximum benefit possible on to staff without exceeding the limits of financial sustainability of the institution. For this reason, the negotiating parties reaffirmed their commitment to the Multiple-year, Income-related Remuneration Improvement Model used as a framework for negotiations. The model and its applications are unique and have as a point of departure that the UFS must be and remains financially sustainable.

Capacity building and structural adjustments

Agreement was reached that 1,54% will be allocated for growth in capacity building to ensure that provision is made for the growth of the UFS over the last few years. A further 0,78% will be allocated to structural adjustments.

Agreement about additional matters such as funeral loans was also reached.

“The Mutual Forum is particularly pleased that a general salary adjustment of 7,5 % could be negotiated for 2012. Taken into account the world financial downturn, marked cuts in university subsidies and the growth of the university, this is a remarkable achievement,” says Prof. Johan Grobbelaar, Chairperson of the Mutual Negotiation Forum.

Increase for Professors, Deputy and Assistant Directors

According to Prof. Grobbelaar the Mutual Forum is also pleased that Professors and Deputy and Assistant Directors will benefit from the structural adjustments. These increases will align the positions with the median of the higher education market. The 1,54% allocated for growth will ensure that appointments can be made where the needs are the highest. The special year-end bonus of R2 500 is an early Christmas gift and implies that the employees in lower salary categories receive an effective increase of almost 9,5 %.

“The UFS is in a unique position when it comes to salary negotiations, because the funding model developed more than a decade ago, has stood the test of time and ensured that the staff receive the maximum possible benefits. Of particular note is the fact that the two majority unions (UVPERSU and NEHAWU) work together. The mutual trust between the unions and management is an example of how large organisations can function to reach specific goals and staff harmony,” says Prof. Grobbelaar.

The implementation date for the salary adjustment is 1 January 2012. The adjustment will be calculated on the total remuneration package.

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