Need for political will to address Down syndrome challenges

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Lahja Nashuuta

Windhoek - Natalia Mwelitota of Okonyota in Ruacana constituency in Namibia’s northern Omusati region was born with almond-shaped eyes, small, flat nose, and a round, flattened face. Even though she can walk and play with other children, she cannot communicate properly as she is hearing-impaired.

Natalia is one among countless children in Namibia that are deprived of their human rights and freedom of association because they were born with Down syndrome (DS).

Besides being stigmatised by society, Natalia is also deprived of her human rights that include access to education and freedom of association because of her condition.

In some societies, these children are shunned and seen as either a curse or the result of witchcraft.

There are also adults with DS, who are neglected and left to wander the streets, while some suffer all forms of cruelty, including being chained, tied up and locked away because they are considered a disgrace to their families.

The World Health Organisation (WHO) defines Down syndrome as a genetic disorder that is also known as ‘trisomy 21’, as it is caused by the presence of an extra copy of Chromosome 21.

WHO reveals that the one extra chromosome is the cause of much havoc in the body, ranging from serious medical problems to a whole range of developmental challenges.

Although there are no available data to indicate the exact number of people with Down syndrome in the country, be it at district, regional or national level, the Down Syndrome Association of Namibia indicates that there are an estimated 3,400 people with this chromosomal disorder.

WHO estimates that 1 in every 1,000 babies are born with Down syndrome globally every year.

Windhoek-based psychologist, Dr Shaun Whittaker, confirms that DS cases are on the increase mostly in babies born to older mothers and those delivered through caesarean section.

Other conditions linked to this health condition include heart problems and reduced hearing and vision. 

Although many of these problems can be treated, and frequent health checks can ensure that any problems are detected as early as possible, nothing can be done to prevent this genetic disorder ‑ either before or during pregnancy, Whittaker says.

“DS is nobody’s fault. But it does come as a huge blow to the parents,” he said, while agreeing that people with DS have been neglected for many years and regarded as unable and non-productive citizens.

“At household level, people tend to focus on the children that are normal, give them education and other necessities,” he said.

Among the challenges faced by many parents and caretakers are getting the children into special schools and educating them, especially those living in the rural areas, says Dr Whittaker.

“There are only two special schools in Namibia with a curriculum tailor-made for people born with Down syndrome and these are based in Windhoek. These schools are mainly for those that can afford, therefore, the majority of children born in the villages do not attend school,” he says.

Whittaker further stresses that since there are no other education programmes in place for the children who attend those special schools upon completion, most of them end up unemployed and wandering on the streets.

“It is disappointing that even the children who attend these special schools, once they complete their [their studies they can]not be employed nor further their studies at universities, as those [institutions’] curricula do not cater for them,” he says.

Whittaker further says children born with DS have special nutritional needs and required vitamins to develop their brains, which are also costly and it would be beneficial if the government and other financiers could fund some of those needs that parents cannot afford.

Whittaker, therefore, calls on the Ministry of Health and Social Services to intervene and develop programmes such as physiotherapy, speech therapy, and extra personal attention, along with emotional support for the child and the family starting soon after birth.

He said although there is an association that advocates for DS, more still needs to be done at government level, especially when it comes to availing resources to address both health and development challenges facing these people. “Of course, the country is faced with economic challenges and it is understandable that government has to prioritise the available resources but it is disappointing that there is no budget allocated to cater for people born with Down syndrome,” he said.

He emphasizes that people with Down syndrome are capable of being “very productive” members of society. 

“They can learn to do many things that other people can do. They can learn to talk and to work in certain jobs. I’ve seen them create amazing handcrafts and art,” he says.

Eline van der Linden, a founding member of Down Syndrome Association of Namibia (DSAN) shared the same sentiments with Dr Whittaker on challenges facing people with DS.

Van Der Linden expressed that But with a strong political will there is so much opportunities in Namibia to make a difference for people with DS and to create openness in society and address all myths regarding people born with Down syndrome.

DSAN is working with the Ministry of Health and Social Services towards a robust referral system, making sure that people with DS are seen by cardiologists, and will receive early intervention therapies such as speech, physio and occupational therapy.

Another area of cooperation would be the introduction of disability clinics, whereby different organisations for people with challenges in Namibia, including DSAN, will encourage their members to take their children for health check-up. 

“These will not be actual clinic structures but periodic events at health facilities throughout Namibia, supported by medics from both the public and private sectors,” she explained.

 

 

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