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.