In 1998, Ng Kui Choo, a lecturer, was expecting her fourth child while juggling her doctoral studies. With three children in tow, the high-achieving mother saw the new addition to the family as room to groom another professional, be it a doctor or a lawyer. However, a visit to the paediatrician was set to change the trajectory of her family.
The doctor said the child would not be able to read, write or count. “I am a lecturer, who has educated so many children but I can’t teach my own child? That was what came into my mind at that time. -Ng Kui Choo, senior lecturer at a UiTM in Sarawak
The future of Kui Choo’s newborn seemed bleak in a time of limited discussions on Down Syndrome.
Down Syndrome is a chromosomal abnormality, where there are three copies of Chromosome 21 instead of the normal two at birth. In Malaysia, outdated statistics show that 1 in 800 live births are babies with Down Syndrome.
Down Syndrome children are easily recognisable due to their unique facial features. Some may have developmental delays resulting in crawling and walking at a later age, and some may have a comorbidity of other medical conditions.
They learn more slowly and have difficulties with complex reasoning and judgement. The degree of intellectual impairment, however, varies tremendously. There is no ‘cure’ for Down syndrome but there is much that can be done to help someone with the condition lead a healthy, active and more independent life. – Dr Asrul Abdul Wahab, former president of the parents support group at Kiwanis Down Syndrome Foundation (KDSF) National Centre
Kui Choo eventually halted her doctoral studies to devote her spare time as a secretary at the Society for Parents of Children with Special Needs (Pibakat), a support group for parents with children with Down Syndrome and vowed to accommodate the specific needs of her daughter, Tan Yii Ping. However, outside of their bubble, the world was more sceptical.
Early on in Yii Ping’s childhood, rejection was the name of the game.
My daughter was rejected by a local preschool. She was also not invited to a neighbour’s birthday while her elder siblings were asked to join. – Ng Kui Choo, senior lecturer at a UiTM in Sarawak
Two decades later, has Malaysia created a more inclusive education landscape for children with Down Syndrome?
Lost Opportunities During The Crucial Developmental Window
Yii Ping had no access to preschool until she was seven and soon was enrolled in a special school run by the Association for the Welfare of Intellectually Disabled Children (Perkata) where she was a student for the next 10 years.
For Wan Alya Wan Hanizan, her mother Hanizan Hussin, advisor at Malaysian Association Of Down Syndrome (PSDM), was a step ahead and sent her to the Early Intervention Programme (EIP). Eventually, Alya attended the preschool run by PSDM.
Children with Down Syndrome can develop life skills to manage normal day-to-day chores, such as hygiene, by attending EIP programs run by non-governmental organisations such as Kiwanis Down Syndrome Foundation. In centres such as Kiwanis where EIP is the primary focus to ensure a smooth transition of children with Down Syndrome to government schools.
In East Malaysia, the opening of the One Step Early Intervention Centre (OSEIC) by PIBAKAT in Kuching, Sarawak was met with a flurry of attention. The slots were quickly taken by eager parents – a sign that more EIP is needed outside of Klang Valley. Kristina Bujang, mother to four-year-old Nur Irsa Dayana was willing to be put on the waiting list to secure a slot.
We as a family want to give her our best. Irsa now attends lessons once a week for about one hour and 15 minutes, and after three months, I can see small improvements in her and that made all of us very happy. – Kristina Bujang, mother to Nur Irsa
Hanizan shared that there is an ongoing misconception that has not eroded as time passes by. This misconception originates from the lack of understanding of the learning needs of Down Syndrome children.
Yes, they take time to acquire new skills compared to normal children. They are actually visual learners, so it would help them. However, they are able to socialise with normally developing peers, an opportunity that is denied to them. – Hanizan Hussin, advisor at the Malaysian Association Of Down Syndrome (PSDM)
Hanizan also said that the landscape hasn’t changed as much as access to preschool, particularly from a governmental perspective – without the resources provided by EIP or preschool, especially for low-income earners, children with Down Syndrome may have difficulty fitting into normal schools in the future.
There are not many opportunities given in preschools such as the Taska or even the community-based rehabilitation centres (PDK) classes. The learning services are not specifically catered to the needs of Down Syndrome children – even for other disabilities as well. – Hanizan Hussin, advisor at the Malaysian Association Of Down Syndrome (PSDM)
Even if Down Syndrome children are performing well in EIP and ready to take the next step, joining classes with normal students, the doors remain shut in private preschools.
The minute that the parents said that the child has Down Syndrome even without seeing the child. It’s almost assumed that if your child has Down Syndrome, your child is not able to learn. – Dr Rajini Sarvananthan, Consultant Developmental Paediatrician
To Dr Rajini, a consultant developmental paediatrician, the action of some preschools rejecting Down Syndrome children to join strays away from building a more inclusive community in Malaysia.
It should start when they are children, if all children are mixed from a young age, if they are accepting of each other, it helps as they grow up. – Dr Rajini Sarvananthan, Consultant Developmental Paediatrician
In recent years, preschools for children with special needs have slowly bloomed in government schools; however, their availability is limited. The cold welcome from private preschool establishments adds to the difficulty for Down Syndrome children to get a fighting chance to lead a meaningful life.
Not So Special After All
Since 1988, special needs education has been at the forefront of the Malaysian government’s education agenda. In the Malaysian Education Blueprint 2013-2025, the government has stated their commitment to enhancing the existing framework of special needs education in Malaysia. In 2014, a special education facility for learning disabilities was opened, an addition to the over 30 existing special education schools nationwide.
The Pendidikan Khas Integrasi (PPKI) or integrated special education programme has been in place for a long time, since the 1960s. Schools with PPKI would enrol students with special needs and give them their own separate classes. Only those who show potential would be part of the normal classes.
Alya was part of PPKI and graduated when she was 19. However, Hanizan believes that special needs programmes in mainstream schools are mere afterthoughts.
The misconception in some of these facilities is that they do not give the opportunity for those with learning disabilities to improve in schools. For many years, when they went to primary and secondary schools, they didn’t develop well so parents are a bit disappointed by it. – Hanizan Hussin, advisor at the Malaysian Association Of Down Syndrome (PSDM)
There remain pressing issues in special education facilities under the Ministry of Education. These issues include unsupervised and unstructured early intervention programs, poor infrastructure, financial constraints and a low level of readiness among educators.
As a result of the constraints, parents tend to send their children to private facilities where their monthly fees can range between RM1,000 and RM4,500. For families that are able to afford the services, it is a matter of ensuring their Down Syndrome children are continually developing and receiving the help they need.
Muhammad Anaqi, a Down Syndrome student who is enrolled at the Adni Islamic School where the facility takes notes of his needs, is provided with a special needs teacher that assists him in certain subjects that he finds difficult.
Parents will always hope the school can provide better facilities and services. I would like for Muhammad to experience attending school with typical children so that he is able to mix, integrate and function well within society. – Roslina Abdul Rahman, mother of a Down Syndrome child
Another edge that should be smoothed out when it comes to education for Down Syndrome children, especially in government-run facilities is offering opportunities for the children to develop and enhance their existing skills. Despite being intellectually challenged, children with Down Syndrome are able to interact in social situations.
I believe inclusiveness is the key to breaking down barriers or reducing the stigma. I hope children with special needs can be included in mainstream schools. We need to let them interact, learn and play with regularly-developing children. – Ng Kui Choo, senior lecturer at a UiTM in Sarawak
Soon after Alya finished her schooling, Hanizan transferred her to vocational training at PSDM where more comprehensive life skills training was provided. Dr Rajini also believes that the focus of education for children with special needs should be beyond numeracy and literacy skills.
School should be more than just learning your ABCs, it is also a place where children can learn how to take the bus or go to the market. – Dr Rajini Sarvananthan, Consultant Developmental Paediatrician 
Laying The Bricks
Education for Down Syndrome children should start early on, according to Hanizan. When Alya was diagnosed with the disability, Hanizan took matters personally, taking the initiative to teach Alya sign language using MAKATON, a method of communication that supports speech for Down Syndrome children to help her with communicating with her siblings.
Education for Down syndrome individuals is very critical. In fact, it should start in their infancy. They need to be involved in physiotherapy, doctor’s visits especially if they have other medical conditions. Bringing them out to hospitals and public spaces would allow them to learn more on how to interact and navigate daily life. – Hanizan Hussin, advisor at the Malaysian Association Of Down Syndrome (PSDM)
This was something Dr Rajini concurred with, as there is a tendency for parents of Down Syndrome children to mollycoddle out of pity. Something that would only do more harm than good.
Do not assume just because a child with Down Syndrome is slower, doesn’t mean that they’ll gain independence eventually. That means taking away the mindset of “kesian” (pity) or feeling sorry for the children.
Try to get them more independent through letting them eat themselves or dressing themselves. Yes, it’s going to take longer and if you start with basic early on, they’ll pick up the skills in time. – Dr Rajini Sarvananthan, Consultant Developmental Paediatrician
Raising a Down Syndrome child is no easy feat as shared by Kui Choo. There are disappointments, frustrations and a tendency to compare their achievements to normal children. Kui Choo learned it the hard way:
There are times I forget that she is a child with special needs … It makes me feel like a failed mother despite trying my best. I feel guilty but we just have to move on. – Ng Kui Choo, senior lecturer at a UiTM in Sarawak
Hanizan and Kui Choo see that joining a support group provided them with the help they needed. They listen to families and parents who are in the same shoes as her to exchange advice and share their children’s unique accomplishments.
It is never going to be easy to raise a Down syndrome child, but you are not alone.– Ng Kui Choo, senior lecturer at a UiTM in Sarawak
Today, Alya, 29, is actively pursuing vocational training at PSDM and works as a teacher in a special needs preschool. It is just as obvious to Kui Choo that she is just as proud as Yii Ping of her other accomplished children, and that she found blessings in disguise on the way.
However, as a society, we still have a long way to go in providing inclusive education for all in the community. Inclusion is more than just ensuring the bare minimum facilities that pass the policy’s requirement. The final goal should always be to ensure Down Syndrome and others who are different to us are part of the microcosm of a larger society. They too should be able to be understood and thrive in Malaysia.
An additional chromosome to their genetic make-ups makes them special, by accepting them wholeheartedly to society – wouldn’t it make our own community just a tad bit more special?
In addition to over 30 special education schools run by the government, notably, non-governmental organisations have filled the gap in providing affordable education as well as advocating for a society that does not treat Down syndrome individuals as fringe characters. These are:
- Persatuan Down Sindrom Malaysia (PSDM) is a non-profit organisation established in 2001 dedicated to ensuring individuals with Down Syndrome have access to education and better job prospects in Malaysia. The organisation is actively working to fight for the rights of individuals with Down Syndrome to be upheld.
- Kiwanis Down Syndrome Foundation (KDSF) is one of the oldest centres in Malaysia for children with Down syndrome. The foundation has been around since 1990 and its primary focus includes providing essential early intervention to prepare children with Down syndrome to adapt to government schools. To date, there are five Kiwanis centres nationwide
- Sarawak Society for Parents of Children with Special Needs (PIBAKAT), is a society gathering parents with children with special needs in Sarawak. The society offers toy libraries, early intervention programs, and playgroups for children with special needs to interact. In 2020, the society opened the doors to the first one-step early intervention centre in the state; One Step Early Intervention Centre (OSEIC).
- Association for the Welfare of Intellectually Disabled Children (Perkata) is a non-profit charitable organisation that runs a school for intellectually challenged children in Sarawak. The school aims to cultivate life skills and ensure children with intellectual disabilities are capable of independent life.
- Malaysian CARE pioneered early intervention programmes in the 1980s that tackle disabilities such as Autism Spectrum Disorder and Down Syndrome. The organisation inculcates life skills for children with disabilities and also equips special needs teachers with the necessary skills.
Explore our sources:
- P.P. Goh. (2021).Life is looking up for the mother of a Down syndrome child. Free Malaysia Today. Link
- W.T.Lim. (2022). Understanding Down syndrome. New Straits Times. Link
- MyHealth Portal. (2012).Down Syndrome. Link
- Z.Mustafa. (2016). Doing more for disabilities. New Straits Times. Link
- N.Nais. (2021). OSEIC:A place of hope for children with special needs. Dayak Daily. Link
- BFM. (2022). EMPLOYMENT AND INCLUSION FOR PEOPLE WITH DOWN SYNDROME. Link
- The Borgen Magazine. (2021). The Evolution of Special Education in Malaysia. Link
- N.Saiful Bahry., A.Mat., N.L.Kori., A.Mohd Ali., Z.Abdul Munir., & M.Z.Mohd Salleh. (2019). Challenges Faced by Malaysian Parents in Caregiving of a Child with Disabilities. Global Journal of Business and Social Science Review. Link