Author Archives: apdsf

APDSF organizes its annual AGM in various countries so as to reach out to the local population and provide them support through the expertise held by the members. Last year the AGM was at Nepal where training was provided by experts from APDSF – Speech Therapists, Adult rehab professionals, Special Educators, counsellors and pediatrician- to the local therapists. The event was a success with follow-up online sessions being planned for these local therapists to hone their skills. There was a lot of learning and sharing of information that happened at the AGM.

APDSF would like to connect with the local bodies in order to provide guidance through the expertise of member countries to benefit the local population. At Malaysia too APDSF is holding hands with local support groups to further the cause and provide as much information and support as we can. The local bodies also showcase the talent of their self-advocates with Down syndrome to the representatives from the various countries so they can also learn and take back some experiences.

We have a Medical Committee Meeting chaired by Dr. Bhavani Sriram from Singapore, where we discuss the various medical issues in member countries and the solutions thereof. We have each country presenting their reports and the APDSF AGM.

The meetings are for 2 days . One day where we have the Medical Committee Meeting and the country reports and the next day, we have the AGM. We usually also organize a tour of the city for the guests where they can go for local sight-seeing/shopping etc.

This year APDSF plans to make the AGM more encompassing.

WHAT WE WOULD LIKE TO DO FOR APDSF AGM 2024

• Last year at our AGM in Kathmandu, we had done a camp for therapists from Nepal who had come from all parts of the country and experts from the APDSF had conducted sessions for them. Based on the requirement of the local bodies, we would like to organize something that would benefit the Malaysian team.
• There are also plans for self-advocacy sessions by persons with Down syndrome they can interact and discuss various things relevant amongst them with a moderator. We are also looking at having a meet and greet with the local parents and self-advocates where interaction among the various delegates and local population will help understand the various developments that we can take back to our respective countries.
• We also intend organize an art exhibition by our self-advocates with Down syndrome from across the Asia Pacific region. Curated by noted curator Ms. Esther Joosa, this is one program that would be an experience to remember for all the parents and self-advocates attending the event.

We intend the AGM at Kualalampur to be a learning experience for all countries that attend the event. A Zoom meeting was convened to understand what delegates wanted to discuss at the meeting and a lot of positive points emerged. To know more CLICK HERE

APDSF AGM 2024

• The venue for the AGM is Hotel Mercure Kuala Lumpur Shaw Parade, a Four star property, which is about 45 minutes from the  International Airport.
• The check in would be on the 5^th of December and check out on the 8^th of December 2024.
• Only two (2) members from each country would be hosted by the APDSF
  • Please share the names of the participants of the AGM LATEST BY 30^th JUNE 2024 to enable us make the necessary arrangements. Fill in the details in the form link provided – https://forms.gle/11NRQcvFkr4WcWh39
  • If there are other members who would like to come for the event, they need to make their own arrangements
• We would be requesting for flight details closer to the event for providing airport pick-up and drop for the two registered members.
• The rooms will be provided on a twin sharing basis to all participants.
• The Medical Committee Meeting will be organized on the 6^th of December 2024 and the AGM would be on the 7^th of December 2024. Detailed agenda would be shared closer to the date of the event
• This time, we are planning an art session for self-advocates with Down syndrome. We would like to know how many self-advocates from your country would like to participate?
  • Please note, the arrangements for their stay and travel will have to be made by them
  • They would be given an opportunity to learn and also showcase their art work at the venue

Date – 10 June 2024

Attendees – Mr. Paul Zanon (advisor), representatives from India, Nepal, Sri Lanka, Bangladesh, Pakistan, Singapore, Japan, UAE, Philippines and Malaysia.

Agenda – APDSF AGM at Kualalampur – Discussion points during the AGM.

Mr. Paul Zanon, advisor, APDSF began the meeting by thanking all present. Following points were discussed.

1. Dr. Bhavani Sriram suggested discussions on creation of the Down Syndrome registry, Issues of Mental health and Ageing, 
2. Mr. Luis Harder from Philippines suggested topics of discussion to cover assisted care, education employability and semi-independent living.
3. Dr. Lalita Joshi from Nepal spoke about the main problem being the registry system
   1. In Nepal, DS comes under intellectual and developmental disability.
   1.  Numbers are only assumptions since there is no exact data. So, without data receiving benefits becomes difficult
4. Mr. Zanon emphasized on the importance of empowering people with knowledge on how DS is different from other disabilities. It is the only form of disability which is instantly recognizable and is often used as the face of pan learning disability, which comes with its issues – mainly due to the fact that DS has its own individual spectrum of ability and conditions, specific to DS, which differentiate it from general LD.
5. Dr. Surekha Ramachandran said that India faced the same issue of DS falling under Intellectual Disability. However Intellectual Disability does not define DS.
6. Mr. Zanon pointed out that in most cases a person with DS is showcased on the marketing literature depicting Learning Disability. He suggested some noise to be made in the UN also to make progress in regard to creating a separate disability.
7. Dr. Ramachandran said that India has stared organizing sporting events specifically for DS. There is a need to remove DS from Intellectual Disability.
8. Mr. Tariq from Pakistan shared the disability certificate from Pakistan where the PwD was asked for the percentage of disability.
   1. PwDS are excluded from this since they look fine physically.  
   1. They therefore find it difficult to get Disability certificate. They are refused registration as PwDS.
   1. He wanted to APDSF to discuss this and get ideas.
9. Mr. Zanon said that the discussions could be there. However, no solution can be promised.
10. Mr. Sardar Razzak from Bangladesh said that in Bangladesh, the Ministry of Social Development had categorized disability into 2 groups – Physical disability and NDD –
    1. NDD – Autism, DS, ID and CP.
    1. Govt. has taken this as a law since 2013.
    1.  Separate identification for all is available
11. The Problem here is the numbers according to govt. records is much lower.
    1. Person who identifies does not know during registration.
    1. DS is then put under multiple disabilities.
12. PZ then mentioned how education becomes important in this area. A 2-step approach is important.
    1. Training of these people who need to identify disabilities is crucial
13. Dr. Dayaratne from Sri Lanka said that the  same problem in recognition is there in Sri Lanka too.
    1. There is no standard way of initial diagnosis and no proper records.
    1. He wanted a detailed discussion for a common protocol in the region to have genetic confirmation of DS/other genetic issues
    1. He mentioned the ageing population with DS as another important point of discussion
14. Mr. Galgamuwa from Sri Lanka mentioned about clubs they planned to start specifically for Down syndrome, but they have been able to form only 10.
    1. They are  doing this along with the Youth club.
    1. Difficult due to Rural/urban divide.
    1. They are planning in rural areas since urban areas have many centers, courses etc.
    1. Ageing is a big problem now. Dementia etc.
    1. Guidelines for setting standards for setting these centers can also be discussed.
15. Mr. Sardar Razzak spoke about discussions on Inclusive education.
    1. Trying non-formal education for PwDS. Difficult for formal academic education.
    1. APDSF can come up with an education guideline for the region as regular education system is difficult.
16. Mr. Zanon then broached the topic of Care for persons with DS.
    1.  Sibling taking care is not easy.
    1. The care available for people with DS should be discussed and best practices can be shared. 
17. Dr. Ramachandran mentioned about how in India due to the largeness of the country and the differences in  language, food, culture, families from same state (5) meet and plan for future. Financial and social sharing for families living together which would work better instead of creating large group homes.
18. Mr. Galgamuwa said that Sri Lanka also went by the same principles. Families and government collaboration at the local level to create welfare clubs was useful. Smaller numbers where grass root level staff like teachers, gram sevaka etc to be a part of the board of the group.
19. Mr. Zanon agreed that small numbers will be more productive. Exchanging best practice our goal at APDSF meetings and advanced care planning to be a point of discussion.
20. Dr. Joshi from Nepal opined that health and education go together. Health of the self-advocate is important. But parents’ health also to be considered.
    1. Parent education on caring for them is important.
    1. In Nepal, areas where they cannot reach, counselling is provided over the phone, however, how much is understood is a big question. Therefore. educating parents and volunteers who meet these families is crucial.
21. Education has to be discussed
22. Another important aspect mentioned by Malaysia was Vocational training and employment.
23. Independent life skills as an area should also be shared during these meetings.
24. An Art Exhibition at Kualalampur is planned for self-advocates –Art expert and curator,  Ms.Esther Joosa (https://www.artsofthearth.org/about-arts-of-the-earth) will have a session with both parents and self-advocates.
    1. All art work to be shared with us. That will be displayed. 
    1. Virtually, we can keep circulating on Social media.
    1. Self-advocates have to come for the sessions from the various countries.
    1. Art work guidelines will be shared soon.
25. Dr. Ramachandran emphasized on the Self-advocates’ program.
    1. Time for every country to bring at least 6 Self-Advocates to talk about their experiences.
    1. Not only artists, but all who want to know what is happening outside.
    1. She wanted to know from Malaysia what they expect from APDSF and what APDSF could offer. Malaysia shared about Employment and Vocational training. Could do a workshop there if Malaysia so desires/.
26. Mr. Galgamuwa was of the opinion that we could have local self-advocates and their parents who can interact with the members of the APDSF. At least 20-30 parents to discuss ideas and experiences.
27. Ms. Joyce from Malaysia offered to have different sessions as per the need.
28. Dr. Ramachandran suggested that on one of the evenings, families can get together to interact with one another.
29. Mr. Zanon then thanked Malaysia and ended the meeting on a productive note.