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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

A new dawn for student governance

2011-09-02

Our SRC presidents: Richard Chemaly (Bloemfontein Campus) and Bongani Ncgaca (Qwaqwa Campus)
Photo: Hannes Pieterse

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The successful and peaceful completion of the University of the Free State’s (UFS) Student Representative (SRC) elections 2011 herals a new dawn for student governance with the announcement of the results today (1 September 2011).

The SRC elections at the Qwaqwa Campus were completed on 25 August 2011, while the elections at our Bloemfontein Campus took place on 29 and 30 August 2011.

“A new dawn heralds a new day when Richard Chemaly, the son of Lebanese immigrants becomes President of an SRC, as elected by students from all racial backgrounds and from across the student body at large. A new day has arrived when candidates could have won voter support across racial lines; a new day is here when all SRC members are now recognised leaders on the basis of academic accountability,” the Dean of Student Affairs, Mr Rudi Buys, says.

A new dawn has arrived; firstly, insofar as student elections for the choice of student leaders at the UFS now proceed according to a non-racial and a non-party political basis.

Not only did the SRC elections at both the Bloemfontein and Qwaqwa Campuses achieve its required quorum, with 31% (4 729 votes) and 50% (2 112 votes) voter turnout, respectively, but the SRC elected by students at the Bloemfontein Campus is 55% black and 45% white, and 60% female and 40% male. The numbers of votes gained by successful candidates also indicate that voters from all racial backgrounds have voted for their candidates of choice.

Secondly, a new dawn has arrived insofar as student governance occupied by only some student groups claiming to speak on behalf of all students has made way for direct voting for candidates by the broad student body and the threefold increase of student governance structures on campus.

Not only did all students at our Bloemfontein and Qwaqwa Campuses (a total of 15 173 and 4 257, respectively) have the opportunity to participate in voting directly, but nine additional Student Councils were established at our Bloemfontein Campus that each holds an ex officio seat on the SRC and allows for student governance in all the major student sectors of the student body, such as for postgraduate students, international students and all categories of student associations.

The various councils now established include the Student Academic Affairs Council, the Student Associations Council, the Postgraduate Student Council, the International Student Council, the Student Media Council, the Residences Student Council, the Commuter Student Council and the Rag Community Service Fundraising and Service Councils. In addition, all faculties also introduced student representative structures at departmental and faculty level in 2011 to ensure student participation in faculty management and governance.

The SRC members at the Bloemfontein Campus are:

Elective portfolios:
President: Mr Richard Chemaly
Vice-President: Mr Lefata David Maklein
Secretary: Ms Matshepo Ramokgadi
Treasurer: Mr Werner Pretorius
Arts & Culture: Ms Alta Grobelaar
Accessibility & Student Support: Mr William Clayton
First-generation Students: Ms Petre du Plessis
Media, Marketing & Liaison: Ms Biejanka Calitz
Sport: Mr Bonolo Thebe
Student Development & Environmental Affairs: Ms Busisiwe Madikizela
Transformation: Ms Qaqamba Mhlauli

Ex officio portfolios:
Dialogue & Ex officio: Associations Student Council: Mr Anesu Ruswa
Academic Affairs & Ex officio: Academic Affairs Student Council: Mr Jean Vermaas
Residence Affairs & Ex officio: Campus Residences Student Council: Ms Mpho Mokaleng
City student Affairs & Ex officio: Commuter Student Council: Ms Annemieke Plekker
Postgraduate Affairs & Ex officio: Postgraduate Student Council: Ms Glancina Mokone
International Affairs & Ex officio: International Student Council: Mr Pitso Ramokoatsi
Student Media Affairs & Ex officio: Student Media Council: Ms Nicole Heyns
RAG Community Service & Ex officio: RAG Fundraising Council: Ms Iselma Parker
RAG Community Service & Ex officio: RAG Community Service Council: Ms Motheo Pooe

In the Qwaqwa elections, SASCO achieved 36,84% of the vote, with SADESMO, PASMA and NASMO each achieving 29,73% and 18,56% and 12,74%, respectively .

Mr Bongani Ncgaca was elected as the President of the SRC at our Qwaqwa Campus, while the names of the SRC members at the campus will be announced on 7 September 2011.

The Central SRC will be established on 8 September 2011 by a joint sitting of the two SRCs.

The successful completion of the SRC elections at the Bloemfontein Campus follows a yearlong review process of student governance by a Broad Student Transformation Forum (BSTF) that consists of 59 delegations from student organisations and residences. The BSTF adopted independent candidacy for elective portfolios and additional student councils to provide ex officio seats on the SRC as the template for student governance, following the consideration of a series of benchmarking reports on student governance nationally and internationally.

The UFS Council adopted the new SRC Constitution, as drafted and submitted by the BSTF, on 3 June 2011.

Media Release
1 September 2011
Issued by: Lacea Loader
Director: Strategic Communication
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: news@ufs.ac.za

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