Greater awareness needed
GREATER public awareness and understanding of Down Syndrome is needed to mobilise support and recognition of the rights and well-being of individuals with Down Syndrome, said the Head of Child Development Centre (CDC) yesterday at a picnic to mark World Down Syndrome Day.
"Elsewhere in the world, celebrating World Down Syndrome Day proactively has empowered persons with Down Syndrome and their communities globally, thus enabling the realisation of an inclusive society," said Dr Hjh Mawarni Hj Abd Hamid in her speech at Berakas Forest Recreational Park.
In an interview with The Brunei Times, CDC clinical psychologist Pg Hartini Pg Hj Tahir said that Brunei's Down Syndrome community would greatly benefit from wider public support.
"At the moment, the Down's community is relatively small with 70 children registered with the CDC, and possibly around 100 individuals overall. But improvements to current services and facilities could be made if more was known about the condition in the public," she said.
Pg Hartini explained that if Down Syndrome had a similar level of exposure in the community as autism, it could lead to more funding from the public and private sectors.
"Organisations like Smarter (Society for the Management of Autism Related Issues in Training, Education and Resources) have put themselves out there and received a lot of attention as a result. Down Syndrome children could benefit from a similar initiative if there was, say, a centre for Down Syndrome that caters specifically for that condition, like there are non-profit organisations that cater to autism such as Smarter and Learning Ladders," she said. The clinical psychologist added that NGOs often provide a support network for families of special children by bringing them together in an environment where they can share their experiences.
The centre, which is under the Ministry of Health, provides medical support and assistance to Down Syndrome children, but has over-stretched its resources as it also provides therapy to hundreds of other children with a wide range of developmental and physical disabilities.
Siti Zaleha Abu Salim, a parent of a Down's child, agreed with Pg Hartini's comments saying that families need support groups to bolster their resolve through challenging times.
"There is a support group called 'Able' which is under Pusat Ehsan but it's not active," she said.
"There does need to be more public education on Down Syndrome, maybe through the distribution of pamphlets or some other medium," she added.
Yesterday marked the first time Brunei celebrated World Down Syndrome Day, which was attended by over 70 Down Syndrome children and their families as well as volunteers and staff from CDC.
The centre in collaboration with students from Meragang Sixth Form Centre organised "Picnic in the Park" to commemorate the day with a picnic filled with games and other activities, intended as an opportunity for the students to interact with Down's children.
The event was also attended by Health Minister Pehin Orang Kaya Indera Pahlawan Dato Seri Setia Hj Suyoi Hj Osman and several other senior officials from the Ministry of Health.
Down Syndrome is a chromosomal disorder caused by the presence of an extra 21st chromosome. Individuals with Down syndrome have some impairment of cognitive ability and physical growth, and a particular set of facial characteristics.
Health concerns for individuals with Down's include a higher risk for congenital heart defects, acid reflux disease, recurrent ear infections, sleep apnea and thyroid dysfunctions.
Early childhood intervention, medical treatment and a conducive family environment can all improve the overall development of children with Down Syndrome.
Although some of the physical genetic limitations of Down Syndrome cannot be overcome, education and proper care can greatly improve their quality of life.
The Brunei Times