Down Syndrome Parents Support Group of Bangladesh AMDA Bangladesh(Representative member of DSi)

Down Syndrome Parents Support Group of Bangladesh (program of AMDA Bangladesh) is dedicated to creating greater understanding of the full and rich lives of people with differences by helping parents, educators and medical professionals recognize the true potential of all people with Down syndrome. We want the world to see the sameness, not the difference of people with Down syndrome.

Our mission is to raise awareness and provide resources, as well as promote acceptance and inclusion for people with Down syndrome.

It envisions communities where everyone -- including those with disabilities especially people with Down syndrome -- is accepted, included, empowered and given the opportunity and choice to create their own happiness and path to success.

Major On-going Projects:

At present Down Syndrome Parents Support Group, program of AMDA-Bangladesh has been implementing a Comprehensive community based program integrating following activities on the ground targeting Down Syndrome Communities in general.

  1. Awareness Raising

We have promoted several groups to raise awareness and they are playing very active role in theSocial Media to connect people. Those groups are as follows:

  1. a) Parents Support Group b) Dance Group c) Self-advocate Group d) Siblings Group
  2. e) Down Syndrome Education f) Down Syndrome Voice.
  1. Down Syndrome Resource Centre
The main components in the resource centre are:
  1. a) Early Intervention b) Inclusive Education c) Skill Training d) Employment Promotion
  2. Healthcare Services

In healthcare services we have been carrying out: a) Early Detection b) Health Screening & Counselling c) Speech & Language Pathology d) Psychological Service e) Occupational Therapy.

ACTIVITES REPORTS: Reports on General Activities:

Down Syndrome Parents Support Group of Bangladesh mainly focusing to address Down syndrome issues within its programsand carried out following activities during the period:

  1. Observing World Down Syndrome Day:

This year WDSD has been observed at Dhaka University campus for the first time.

To create massive awareness on Down Syndrome issues and to celebrate the 12th World Down Syndrome Day, in line with the DSi declaration, Down Syndrome Parents Support Group of Bangladesh, University of Dhaka, Department of Communication Disorders, Down Syndrome Society of Bangladesh, Japan Bangladesh Friendship Hospital and AMDA Bangladesh along with other organizations have jointly celebrated the important event on 21st March, 2017. Various programs have been undertaken to celebrate the WDSD 2017.

https://worlddownsyndromeday.org/bangladesh-observed-world-down-syndrome-day-2017-bangladesh

Along with other organizations we also coordinate with the Ministry of Social Welfare, the Government of Bangladesh to take initiative to mark the 12th World Down Syndrome Day. We are one of the member and contributor to the WDSD observance committee formed by the ministry.

  1. WDSD Global Video Event:

We have been contributing to WDSD Global Video Event from Bangladesh since 2014. This year we have participated WDSD Global Video Event-2017 to address the theme of ‘My Voice, My Community’ as per DSi guidelines. Here is the link for more information:

https://www.youtube.com/watch?v=q-YhUEP11Io
  1. Down Syndrome Advocacy Meeting

We offered several meetings to provide education and support for parents and families of children with Down syndrome. The meetings also offered an opportunity for parents to meet other families. These were informal gatherings that allow individuals and families an opportunity to share experiences while creating new friendships. By the way new members are being created. In the meanwhile 30 new members have joined from 6 outreach districts during the period.

We have also inviting students from Department of Communication Disorders, University of Dhaka. On the other hand parents and self-advocates person with Down syndrome have been participating as guest speakers to share their experiences at the orientation classes at the University of Dhaka. By this time we have attended 4 orientation classes of MSS at the Department of Communications Disorders, University of Dhaka.Parents and family volunteers take leadership roles while professionals affiliated with or group provides consultations and trainings for the Parents and their families.

  1. Down Syndrome Resource Centre

Two resource centres have been running. One in Dhaka at Banasreeand another one in the outreach district in Gazaria Sub District. These resourcecentres have been conducting following activities regularly:

  1. Detection and Early Interventions: In the meanwhile 12 children and adults with Down syndrome were identified newly in the targeted communities and necessary steps have been taken for the interventions for both children and adults.
  2. Informal primary education for the children with Down syndrome to include in the regular schools has been running smoothly. We have 10 children with Down syndrome in the resource centre in Dhaka and 8 in Gazaria, combating for the development of their basic education and sending them to regular school as early as possible.
  3. Cultural programs including dance, drawing & paintings, etc. have been practiced and participating in various events and social programs in the communities.
  4. Skill training to promote employments for the adults with Down syndrome specially for office assistant, caregiver, tree plantation, gardening, cooking, etc. have been conducting. In the meanwhile we have promoted employment for 2 persons as office assistant.
  5. Self-advocacy and awareness programs: We have already discussed with University of Dhaka, Department of Communication Disorders to organize self-advocacy and awareness program jointly. A Memorandum of Understanding is in process of signing shortly.
Specific Activities Report under:
  1. Inclusive Education Program:

Down Syndrome Parents Support Group has been playing vital role for development of inclusive education in the mainstream schools with modified curriculum through Down Syndrome Resource Centre:

  1. Steps have been taking continuously to include mainstream schools as educational partner to practice inclusive education at the community level. Awareness has been rising among the parents through early intervention program for the children with Down syndrome.
  2. This program has been striving to involve mainstream schools in the communities. Meanwhile two schools have been involved and become the educational partner to practice informally the inclusive education in the regular class room with children with Down syndrome. With this initiative 6 Children with Down syndrome are going to regular schools.
  3. Recently the Department of Communication Disorders, University of Dhaka has shown interest to work for the educational development of the children with Down syndrome.
  1. Healthcare Services:

Healthcare Services with low cost including emergency medical services for the persons with Down syndrome:

36 Children and adults with Down syndrome have been treated directly and 12 patients were covered through online consultation for outreach district.

  1. Continuous efforts have been given to include the private & Government health service providers as health partner to promote low cost healthcare to the Down syndrome people especially in the marginalized communities.
  2. Japan Bangladesh Friendship Hospital has already become the health partner and providing health care services to the persons with Down syndrome with affordable cost. This hospital is pioneering health care services for the persons with Down syndrome in country. Regular and periodic health check-up is open for the persons with Down syndrome.
  3. Screening and early detection through facilitating proper medical diagnosis to ensure Trisomy 21 and addressing relevant health problems for better treatment.
  4. A medical advisory committee is formedwith consultants from the different discipline of the hospital like child specialist, cardiologist, medicine, Skin, ENT, and Nutritionist etc. We are trying to have the same advisory committee in other private hospital in communities. Already discussed with few.
  5. Department of Communication Disorders, University of Dhaka also become our partner to promote Speech & Language pathology and occupational therapy since last year.
  1. Self-Advocacy Program
We have developed self-advocacy program to create Self Advocates among the persons with Down syndrome:

In order to promote Self Advocacy program we have established ‘Down Syndrome Self Advocate Group of Bangladesh’ as the national self-advocates platform. Recently Department of Communication Disorders, University of Dhaka become the partner of us to promote the National Self Advocate Group in which we will include adult with Down syndrome from all over the country.

This is an initiative of the Down Syndrome Parents Support Group Bangladesh to bring national and international Down Syndrome Self Advocates together in a platform where we can exchange our views to advocate our parents to realize the glorious journey for our wonderful kids. Taking this opportunity we welcome all to join our group as parents Advocates and also Self Advocates to enrich the group with valuable inputs!! Here is the link for more information: https://www.facebook.com/groups/154629974885637/

  1. Awareness Raising Program:
We have taken several remarkable steps for awareness raising, advocacy and communication through social Medias:
  1. A step has been taken to raise awareness about Down syndrome through a regular publication of magazine called Down Syndrome Voice first of its kind in Bangladesh. Here is the link for more information:https://www.facebook.com/downsyndromevoice/.

We will come up with full of research articles, case study, story on Down syndrome from around the globe.

  1. Down Syndrome Dance Group of Bangladesh has been established to promote a better communication to raise awareness. Here is the link for more information:

https://www.facebook.com/DownSyndromeDanceGroupBangladesh . This group has been performing stage shows to promote awareness about Down syndrome.

  1. Down Syndrome Siblings Group of Bangladesh is established to promote awareness about Down syndrome among the siblings of the persons with Down syndrome. Here is the link: https://www.facebook.com/Down-Syndrome-Siblings-of-Bangladesh-1498326347101799/

Periodic meetings, seminar and workshop have been organized to involve siblings to share more about their experiences living with a person with Down syndrome in the family. We have organized 5 meetings with siblings individually and in a group too.

______________________________________________________________________________________________________________________________ Reported by: Sarder A. Razzak Convener, Down Syndrome Parents Support Group of Bangladesh Executive Director, AMDA Bangladesh Date: 25th April, 2017 http://www.amdabd.org/down_syndrome