Down syndrome support in Malaysia left mainly to associations
The country ’ s approach to the condition is lacking , and its education system fails to distinguish between different special needs
Rehabilitation programmes for Down patients are available in communitybased rehabilitation centres and facilities run by nongovernmental organisations and voluntary organisations
Born with Down syndrome , a genetic condition caused by an extra chromosome , Irene Lim ’ s son , Zi Reng , has had to endure a miserable 18 months since the onset of the pandemic .
The 26-year-old would normally spend three days a week working as a shop assistant in Kuala Lumpur and volunteer for another day at a charity , but he ’ s been forced indoors by a combination of lockdowns and fears over his health , since Down syndrome makes him more susceptible to sickness from COVID-19 .
Around one in 800 babies born in Malaysia has Down syndrome , which is also known as Trisomy 21 due to patients having three copies of chromosome 21 in all cells , instead of the usual two copies . The condition is caused by an abnormal cell division during the development of the sperm cell or the egg cell which produces 47 chromosomes rather than the normal 46 , or two pairs of 23 chromosomes , in the human body . The affected child is born with characteristic physical features and may have several associated medical problems .
Confirmation of Down is done through a blood test to detect the extra chromosome 21 . It is also possible to diagnose the condition during pregnancy with blood tests , detailed ultrasonography , or amniotic fluid analysis .
Characteristic physical features include short stature , small head size , flat facial features with upward slanting eyes , and a protruding tongue . People with Down also have a single transverse skin crease on the palms , broad hands , short fingers , and a wide gap between the first and second toes . The condition is related to delayed development and mild to moderate mental disability .
Children with the condition also have a higher incidence of being born with heart defects . Doctors will normally screen the child for congenital heart disease , which would then require medical treatment or surgery .
Rehabilitation programmes for Down patients are available in community-based rehabilitation centres and facilities run by non-governmental organisations and voluntary organisations . The aim of rehabilitation is to help the child achieve their maximum developmental potential and learn to be independent .
Children with Down will benefit from early intervention programmes , special education , and speech therapy . In Malaysia , the child should be registered as early as possible with the state social welfare and education department to ensure they receive proper health , welfare , and special education benefits .
After they ’ re registered , the child is entitled to receive medical benefits from government health facilities and enrolment in schools with special education classes . Other benefits include tax relief or rebates , an incentive allowance when studying or employed , transportation concessions , immigration fees waiver , and an extended pensions payment .
But Irene Lim believes more should be done for Downies , as those with the condition are affectionately called , starting with the realisation that their needs are different from their classmates who are also in special education classes .
“ The government unfortunately has mixed all types of disability ,” said Lim , who is a member of the Malaysian Down Syndrome Association , known by its Malaysian initials PSDM . “ Down syndrome and autistic children should have separate education systems , but they ’ re mixed with slow learners and physically handicapped children , so these are comparatively higher functioning compared to those with autism and Down syndrome . There ’ s a tendency for teachers to neglect these two groups .”
Also , many teachers who provide special needs education in government schools are not trained for the purpose .
“ They ’ re just normal teachers and allocated to our kids without training . This is why there ’ s such a need for centres for children with Down syndrome ,” Lim said .
Organisations such as PSDM are needed because of the lack of specialist Down syndrome support for children in Malaysia . Founded in 2001 , it ’ s run by parents of children with the condition and provides early intervention programmes and training for career skills , while also teaching older Downies lessons on living alone . Beyond Malaysia ’ s main cities of Kuala Lumpur , Johor Bahru , and Penang , however , there are few other associations for Down children .
One is the Kiwani ’ s Down Syndrome Foundation , another well-known organisation that primarily focuses on providing critical early intervention programmes for children with Down .
Its five centres are run like kindergartens and provide a range of programmes including infant stimulation , toddler programmes that emphasise skills development such as early language , enhancement of motor skills , and social development , and a special education programme for pre-school children that ’ s run in a similar way to kindergarten programmes .
After school age , it ’ s important for people with
54 OCTOBER 2021 GlobalHealthAsiaPacific . com