Report

WORLD DOWN SYNDROME DAY 2020

Reported by: Prof Zilfalil Bin Alwi, Dr Mohd Zulkifli Abdul Rahim, Pn Wan Noriah Wan Ramli, Dr Nur Suhaila Idris, Pn Rosnani Zakaria For Persatuan Sindrom Down Negeri Kelantan (PSDNK)

World Down Syndrome Day is observed on the 21st of March every year to signify the underlying abnormality in Down syndrome in which there is the presence of a third (an extra) chromosome on chromosome 21.

World Down Syndrome Day is a global awareness day, observed to raise public awareness of Down syndrome. Various organizations, as well as civil society, including non-governmental organizations (NGO) and private sectors all over the world, observe World Down Syndrome Day through continuous life skills programs.

Activities and events are organised to help raise aware- ness of what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

Individuals with Down syndrome have equal rights to adequate access to health care, early intervention programmes, and to inclusive education, as well as appropriate research vital to the growth and development of the individual. Therefore it is important that awareness and initiatives are put in place to help people with Down syndrome live life to their fullest potential.

The theme for this year World Down Syndrome Day is “We De- cide” based on the principle that people with Down syndrome should have full participation in decision-making about matters affecting their lives. This is in line with the United Nation Convention on the Rights of Persons with Disabilities (CRPD), which state that full, effective and meaningful participation is a core human rights principle.

Events are organised to show how effective and meaningful participation of persons with Down syndrome can be achieved by providing good support, effective communication, acces- sible information and inclusive consultation. Empowerment given to persons with Down syndrome and to those sup- porting them, including their representative associations will lead them to a more effective and meaningful participation.

More effort should be made to reach out to key stakeholders, including educators, employers, healthcare professionals, media, NGOs and government agencies so that the message can be effectively disseminated and bring about meaningful change.

In Malaysia, the Kelantan Down Syndrome Association or Persatuan Sindrom Down Negeri Kelantan (PSDNK) as it is more popularly known, is a parent support group that is active in organizing activities for children with Down Syndrome in the state of Kelantan.

Established in 2016 by a group of parents of children with Down syndrome, PSDNK currently has 73 members from various districts in Kelantan. It was established initially to provide parents with emotional support and accurate information about Down syndrome so that they are better prepared to support and care for their child. Often parents whose child is diagnosed with Down syndrome will initially feel anger, fear and sadness and often do not understand what Down syndrome entails and what it means for their child. Without support, they would struggle to accept their child and may not be able to provide the loving and secure environment that the child needs.

As PSDNK grew in size and strength, more activities are organ- ised for parents and their children at different locations in Kelan- tan. Besides the usual family support group activities, social and independent living skills and vocational skills activities are also organised. These weekly activities provide parents a chance to listen to the lived experiences of people with Down syndrome. Through these social skills activities, the children are provided opportunities to develop their communication skills, self-confidence and self-regulation (such as queuing and taking turns). These social skills may also involve the ability and skill to use public transport, using currency as well as shopping.

For vocational training, PSDNK is working closely with Universiti Sains Malaysia (USM) Disability Transformation Unit (DTU) in the supported employment training programme where children with Down syndrome will get the opportunity to be trained with vocational skills that will prepare them for future employment.

PSDNK is also working closely with Kelantan state government and its agencies as well as several NGOs in the state, to plan for a vocational training center in agriculture aimed at providing future opportunity for employment in the field of agriculture.

One of the highlights of the social and living skill activities was a trip to Singapore organised last year by PSDNK for parents and their Down syndrome children. In Singapore, they were hosted by a representative of a local NGO who took them to various tourist spots and treated them to meals. PSDNK also met their counterpart, Singapore Down Syndrome As- sociation and exchanged ideas and shared their experience in managing their associations. While the children thorough- ly enjoyed this valuable experience of visiting another coun- try and the social skills that was picked up during the trip, it was the return trip to Kelantan that became the highlight. The 29-hour train ride from Singapore to Wakaf Bahru, Kelan- tan offered the children the chance to interact with people of different backgrounds through use of appropriate social skills and behaviour, as well as learning the safety aspect of life within the confine of a moving train over a long period of time.

While there has been a lot of progress made for children with Down syndrome in our country, more can be done to reach out to and engage key stake- holders, increase awareness among the public and policy makers in the country and bring about positive change and provide empowerment to persons with Down syndrome. Yes, together we can make the change

and give them a better life. “We Decide”!