" Understanding Down Syndrome Community " by Hakita

" Understanding Down Syndrome Community " by Hakita

Understanding Down Syndrome Community by HaKita
Authored by: Belinda Chow Jia Hui
Edited by: Aisha Husna bindi Hapidra


  1. Down Syndrome

    Typically, babies are born with 46 chromosomes. However, babies with Down syndrome (DS) would have an extra copy of one of these chromosomes which is chromosome 21. The extra copy of the chromosomes changes the development of the baby’s brain and body and people with DS would face physical and mental challenges. People with DS usually have an IQ in the range of mild-to-moderate low.

    DS is a lifelong condition with no medical treatments for intellectual disability. However, with the development of medical treatments for down syndrome people which has enhanced their quality of life and increased their life expectancy

  2. Types of Down Syndrome

    There are 3 types of DS, though their physical features and behaviors are similar, the distinction between them are the chromosomes, namely:

    1. Trisomy 21: each of the body cells have 3 separate copies of chromosome 21 rather than the usual 2 copies. This is the most common type of DS with approximately 95% of people with DS having Trisomy 21.
    2. Translocation DS: there is an when an extra part or whole extra chromosome 21 but attached or “translocated” to a different chromosome rather than being a separate chromosome 21.
    3. Mosaic Down syndrome: some have 3 copies of chromosome 21, but other cells have the typical two copies of chromosome 21.

  3. Issues Faced by People with Down Syndrome

    Among the health problems that people with DS encounter are:

    * Common facial features

    * Mild to moderate cognitive impairment

    * Learning and speaking disability

    * Obstructive sleep

    * Heart defects at birth

    * Eye diseases

    * Hearing loss

    For March THURights with HaKIta, we were fortunate to have Angie, the former Director of KDSF and Shahbina, a single working mom with DS child supported through KDSF to enlighten us on the issues faced by down syndrome community and how society can play their part to protect the rights of people with down syndrome. 

    According to Shahbina, the obstacles faced by children with DS are they are not given the chance to be a part of intervention programs, and being unentitled to medical and education insurance. Another obstacle raised by Angie is that with the distinct features children with DS have, they are easily judged and marginalized from normal activities such as refusing to enroll them into dance lessons, kindergarten etc.

    However, it is undeniable that people with DS can be trained, though there might be delay in the learning process, to live an independent life. People with DS should not be isolated to only socialize with their own kind, rather the initiative that can be taken by the society is to treat them with compassion and include them in the daily activities.

    According to Shahbina, children in Australia had general awareness and understanding of people with needs such as the DS community since they are integrated together in daily life which helps educate the children in understanding that people have different abilities and in that sense, create empathy towards the DS community.

  4. Malaysian Position: Rights of People with Disabilities

    There are numerous national social welfare and service policies defining rights of people with disabilities in Malaysia but still, the Malaysian Constitution does not include reference to children or adults with disabilities. The National Social Policy 1990 was an early attempt to set out the government’s intention to create a society promoting equalization of opportunities.  

    The most significant step Malaysia took to recognize the rights of people with disabilities came in 2008 with signing of the UN on the Rights of Persons with Disabilities (CRPD) and the enactment of Persons with Disabilities Act 2008 (PWD Act), acknowledging the need to reduce barriers to participation and adopted right-based approach to disability.  

    However, Malaysia still does not prohibit discrimination against persons with disabilities under Article 8(2) of the Federal Constitution and the PWD Act does not impose penalties for discrimination made against them.

  5. Down Syndrome Support Groups

    In Malaysia, among the support groups that are accessible and available for people with DS are:
    * Kiwanis Down Syndrome Foundation (KDSF)
    * Persatuan Sindrom Down Malaysia
    * Langdon Down Centre

    Angie, a former Director of KDSF shared with the audience that KDSF was started in 1989 by Kiwanis Club of KL, a volunteering charity club. The establishment of KDSF focuses on educating children with DS from the age of 2 months to 6 years old with early intervention programs such as infant stimulation program, toddler program and special education program with a group of certified therapist, physiotherapist and special education teachers.

    KDSF has a total of 5 Down Syndrome Centres located at Petaling Jaya, Johor Bahru, Klang, Melaka and Kulai. The highlight of these programs is that children with DS are treated as normal human beings instead of categorizing them as children with DS in order to develop their character and independence. The parents group support in KDSF plays a crucial role as a ‘support system’ for parents and families with DS children with family gatherings, special meetings and talks to tackle issues relating to DS.

  6. Empowering the DS Community

    Early intervention is crucial to children with DS in developing their skills. Angie raised the concern on the quality of such programs available in private sectors and the limited program available for children with DS. With that being said, there are several ideas and solutions brought up by our guest speakers.

    Both Angie and Shahbina had emphasized the importance of awareness in the society on the DS community which can be raised by organizing programs and talks to the general public in understating all sorts of disability, and not just DS community to create a healthy society and community for all to live in.

    Other than that, Shahbina mentioned that gynecologists should be equipped with general advice for parents with DS children in engaging them to a rehabilitation center before searching for early intervention from support groups such as Kiwanis Foundation to not lose time in treating the child as the application process would take up time.

    It is also a known fact that it takes a village to raise a child, thus, family and community support is one of the most fundamental supports that parents with DS child could ever have to not walk alone in the journey of raising them.