Persons with Down syndrome face challenges from family, society, and service providers. Experts said a positive attitude, adequate resources, and social accountability can significantly improve opportunities for persons with Down syndrome. This was discussed in a roundtable titled "Challenges and Opportunities for Children with Down Syndrome in Bangladesh," organized by the Centre for Disability in Development (CDD) in partnership with Liliane Fonds and Dhaka Tribune on July 8, 2024, in Dhaka. The roundtable discussion was moderated by Ahmed Abid, PhD, Adviser to Triangulum and Assistant Professor of the General Education Department, University of Liberal Arts (ULAB). The event was graced by Md. Shah Alam, Managing Director (Joint Secretary) Neuro-Developmental Disability Protection Trust, Ministry of Social Welfare, Government of Bangladesh as the chief guest.
“From today’s roundtable discussion, we can identify the challenges that persons with Down syndrome face and the opportunities they can access at different levels in society to transform them into resources,” CDD Chairman Jowaherul Islam Mamun said. He noted the potential for employment of persons with Down syndrome if proper training is provided, citing Sarder Rafan Razzak, a youth with Down syndrome who films and edits his own YouTube vlogs.
A study titled "Context Analysis on Children with Down Syndrome in Bangladesh," conducted by CDD, Liliane Fonds, and Triangulum, revealed multiple challenges and opportunities for persons with Down syndrome.
The study found that 53% of families face challenges in accessing healthcare services for children with Down syndrome. Access to healthcare in rural areas (11.1%) is lower compared to urban areas (17.1%). The urban-rural disparity is more pronounced in access to specific tests for persons with Down syndrome, with urban areas having a utilization rate of 77.4%, compared to only 16.7% in rural areas. This disparity is also reflected in Karyotyping, Thyroid, Echocardiogram, and Auditory Tests.
The study highlighted limited access to education for children with Down syndrome due to challenges such as bullying, lack of trained teachers, negative societal perceptions, and insufficient support facilities. The study was presented by education and child specialist Tanuva Hossain, who serves as the Director (Research) at Triangulum.
Md. Shah Alam, Managing Director (Joint Secretary) Neuro-Developmental Disability Protection Trust, highlighted the government’s increased commitment to supporting persons with disabilities, including those with Down syndrome.
Nazmul Bari, Director at CDD, elaborated on the organization’s plan to address the specific needs of children and youths with Down syndrome through its next 5-year Strategic Plan, especially in rural areas, using the Community-Based Rehabilitation (CBR) strategy.
Alodia Santos, Organizational Development Adviser at Liliane Fonds, emphasized that with appropriate support, many persons with Down syndrome can attend school and secure livelihoods.
Angelique Kester, Advisor (Rehabilitation and CBR) at Liliane Fonds, praised the context analysis for providing valuable insights and guiding future actions.
Shahanaj Parven Chowdhury, Director at DSSB, discussed the current practice of not sending persons with Down syndrome to school after they turn 18, which contributes to hyperactivity and poses challenges for both the individual and caregivers.
“We need to properly train persons with Down syndrome to make them self-reliant,” said Md. Mahbubul Monir, Secretary General of SWID Bangladesh. “Caregivers should also receive recognition and support, as they make significant sacrifices to care for persons with Down syndrome within their families.”
Discussions underscored that awareness of disabilities is generally lower in rural areas, leading to misidentification and lack of access to necessary identification tests at local levels, which are often too costly for low-income families.
Experts at the roundtable proposed recommendations, including the establishment of support groups, counselling services, and emotional support programs for persons with Down syndrome and their caregivers. They also urged the implementation of extensive awareness campaigns to educate the public, combat social stigma and misconceptions, and develop an inclusive education system with specialized teacher training and tailored educational materials.
Key Statements of the Participants of the Roundtable Discussion
Jowaherul Islam Mamun, Chairman of CDD
Jowaherul Islam Mamun. Photo: Dhaka Tribune Md. Shah Alam, Managing Director (Joint Secretary) Neuro-Developmental Disability Protection Trust, Ministry of Social Welfare, Government of Bangladesh
I would like to thank everyone who joined this roundtable discussion. We are working towards the development and creation of employment opportunities for persons with Down syndrome. In this discussion, parents of children with Down syndrome are present and can share their experiences. Now, we need to identify opportunities for persons with Down syndrome to enable them to become valuable resources at both family and national levels. From this roundtable discussion, we aim to identify the challenges that persons with Down syndrome face.
Md. Shah Alam. Photo: Dhaka Tribune The biggest challenge has now been addressed: the government is committed to working for persons with Down syndrome. We have received an order to compile a conclusive report on the number of persons with Neurodevelopmental Disorders (NDD). We aim to complete an IT-based, near-perfect database within the next year (2025). We are also planning to hold a workshop related to NDD children this year (2024). It is crucial to present reports to policymakers to ensure effective actions are taken.
Angelique Kester, Adviser, Rehabilitation and CBR, Liliane Fonds
Angelique Kester. Photo: Dhaka Tribune I truly believe that this context analysis reflects a strong body of knowledge and will help guide further actions for persons with Down syndrome and their families. Disability is not about the body but influenced by the interlinkages between the body, daily activities, ways of participation, environmental factors such as attitudes, policies, and services, as well as personal wishes and needs. This all starts with the person and their families and friends, which is the same for all people.
Sarder Rafan Razzak, Self-Advocate with Down syndrome, Down Syndrome Society of Bangladesh
Sarder Rafan Razzak. Photo: Dhaka Tribune The rights of children with Down syndrome have to be ensured. Listening to the needs of persons with Down syndrome means showing respect to them. I am self-advocate and I want to work for the well0-being of persons Down Syndrome. I am truly happy to attend this roundtable discussion and I feel honoured to have the opportunity to voice my words.
Statements of the Participants of the Roundtable Discussion
Alodia Santos, Organizational Development Adviser, Liliane Fonds
How we support or treat children with disabilities is often seen as the last, least, or lost priority. We know that disabilities are not all alike and that they are not homogeneous. Even among persons with Down syndrome, there is a wide range of physical and cognitive abilities. We look forward to seeing how the partners and stakeholders will respond to the recommendations and calls for action from this roundtable discussion.
Shahanaj Parven Chowdhury, Director, Down Syndrome Society of Bangladesh
I am a proud mother of a youth with Down syndrome. When a child with Down syndrome grows up, the first problem is school admission, as the school authorities do not want to admit the child above 18 years of age.
S. M. Ali Has Nain Fatme, Project Manager, Child Empowerment Programme (CEP), CDD
We believe that children with disabilities face challenges because of social barriers. Children with disabilities are not a homogeneous group. Their barriers are different depending on the type of disability.
Nazmul Bari, Director, CDD
The issue we are focusing on today is something CDD has not adequately addressed previously. We can learn from the study and its findings, which will help in creating future plans. This will not only benefit CDD but also others present here. We have been delving deeply into this issue for the last couple of years. It is crucial to identify where we need to focus. We will create a policy brief from the study and integrate it into our next 5-year plan (Organizational Strategic Plan).
Tanuva Hossain, Education and Child Specialist, Director (Research), Triangulum
In Bangladesh, children with Down syndrome and their families face unique challenges and opportunities in the broader context of disability rights, such as healthcare, education, social protection, emotional, and psychological support.
Sarder A. Razzak, Chairman, Down Syndrome Society of Bangladesh
It is a great opportunity for us to see this wonderful research. It has provided us with some remarkable findings. We can now raise the voices of our children and parents to find the right path for proper inclusion in society. It is very important to identify children with Down syndrome as early as possible. The percentage of identification, especially in rural areas, is dismal. Without early detection, early intervention is impossible as well.
Professor Dr. Sarder A. Nayeem, Chairman, Japan Bangladesh Friendship Hospital (JBFH)
Every person is born with a specific interest. If we educate them based on their interests, we can integrate them into mainstream society.
Md. Mahabubul Monir, Secretary General, SWID Bangladesh
If we guide a person with Down syndrome, they can easily follow it. Sometimes the person gets misidentified with another disability, which creates problems while receiving healthcare services.
Mohammed Zahidur Rahman, Country Director, CBM-Global, Bangladesh
We will try to advance the cause. We are planning to implement it in our strategy. For that, we will reach out to relevant stakeholders for their inputs.
Mohammad Muslim, Technical Specialist, Humanity & Inclusion (HI)
There are only a few organizations that work for these people in rural areas. People do not even know about Down syndrome. We need to have accurate data and statistics on persons with Down syndrome for effective planning and resource allocation.
Dr. Hakim Arif, Professor & Founder Chairman, Department of Communication Disorders, University of Dhaka
We need to conduct a census study to determine the percentage of persons with neurodevelopmental disorders in Bangladesh. Although the Department of Social Services conducted a study in and around 2018-2019, it was not specific. Adding some variables to the next mass census would be better. A person with Down syndrome is affected in terms of speaking. If we want to enable them to be self-advocates and speak for themselves, we need to address communication challenges faced by them.
Bijan Chowdhury, Save the Children in Bangladesh
There is resource allocation, but its use is not effective. We need to provide inclusive education materials during teacher training to ensure inclusive education in mainstream classrooms.
Ahmed Abid, PhD, Adviser to Triangulum and Assistant Professor of the General Education Department, University of Liberal Arts (ULAB)
To build a smart Bangladesh, we have to work in this field. The policy brief will help us take action. It is about time we think more critically about the needs of persons with Down syndrome.
Jagadish Chandra Roy, Executive Director, Dipshikha
The needs and facilities for persons with disabilities are mostly concentrated in urban areas. If we cannot raise awareness and provide services in rural areas then making a change will be tough.
Md. Arif Mahmud, Operations Specialist, RTI International
We need to develop a family training module and give it the importance it deserves. Additionally, we need to provide in-depth academic training in speech therapy in Bangladesh.
Himel Sanjib Kisku, Programme Focal, Banchte Shekha
At our local level, there is a gap in understanding the different categories of disability, which presents challenges in both policymaking and coordination.
Khandoker Shohel Rana, Advocacy and Communications Coordinator, Sightsavers International
Awareness is crucial, particularly at the policymaking and donor levels. We also need evidence-based advocacy, which is why this type of research is essential. While we have policies in place, there are gaps in monitoring their implementation. Without proper monitoring mechanisms, we cannot make progress.