WHO-SEARO Goodwill Ambassador for ASD Saima Wazed Hossain with the Honorable Prime Minister of Bhutan during a ‘Special Session’ featuring self-advocates. Credit: Rohit Vohra, APF

By Saima Wazed Hossain
DHAKA, Mar 28 2019 (IPS)

The Kingdom of Bhutan is a landlocked country surrounded by Bangladesh, India and the Tibetan region of China. It is a country that brought the term Gross National Happiness as a concept by which to measure a country’s progress. In April 2017 it celebrated WAAD by hosting the International Conference on Autism & Neurodevelopmental Disorders (ANDD2017) in Thimphu.

Not only did it bring together the senior most political leaders for both countries, Prime Minister H.E. Sheikh Hasina and H.E. Dasho Tshering Tobgay, but also Her Majesty the Druk Gyaltsuen, Jetsun Pema Wangchuk, wife of the King of Bhutan.

The 3-day conference, hosted by the Ministry of Health, Royal Government of Bhutan and co-organized with Ministry of Health & Family Welfare, Bangladesh, WHO-SEARO, Shuchona Foundation, and Ability Bhutan Society, the event was organized without any external funding partners and by invitation only.

The theme, developing effective and sustainable multi-sectorial programs for individuals, families and communities living with autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs) was actively discussed through open ended discussions by panels that comprised of experts, care-givers, parents and self-advocates addressing the core challenges faced by families and still left largely unaddressed in the era of the SDGs.

The inaugural ceremony at the Royal Banquet Hall was honored by the presence of Her Majesty the Druk Gyaltsuen, who launched a book titled, Guideline for Differently Abled Friendly Construction published by the Royal Government of Bhutan.

Panelists speaking during the session on ‘Early Identification’. Credit: Rohit Vohra, APF

Followed by speeches by the honored guests, debut of a short film on inclusion produced by Shuchona Foundation and a powerful presentation by Dr. Yolanda Liliana Mayo Ortega, Founder/Executive Director of CASP on ‘The power of two’.

This was followed by a High-Level Discussion on Enabling countries to successfully address ASD and other NDDs as part of their SDGs featuring participation by regional directors and representatives of UNICEF, UNESCAP, UN Women, UNESCO, IOM, ILO and WHO, country representatives and experts. Chaired by H.E., Sheikh Hasina, Co-Chaired by Dr. Poonam Khetrapal Singh, Regional Director of WHO-SEARO and moderated by Saima Hossain the discussion focused on common aspirations and not only set the tone of the Conference but the powerful remarks by speakers paved the way for an effective way forward so that children and adults with NDDs can be included in the global development agenda.

The majority of the conference comprised of 5 thematic sessions on identification, intervention, education, employment and independent living. Each session comprised of 2 panels with 7 participants consisting of self-advocates, professionals and caregivers.

The first thematic session discussed community-based early identification systems, focusing on issues in understanding screening vs. diagnostic evaluation and how rigorous methods can be implemented within the health system. Although early identification is of utmost importance, ASD is difficult to identify conclusively before 5 years of age, and panellists recommended that recognizing developmental deficits with the help of parents and caregivers, will ensure that relevant intense interventions are provided and conducted at the community level at the earliest ages possible.

Day 2 sessions focused on issues surrounding Models for Intervention Services and Evidence-based Intervention Programs. Successful examples of various community-based models for intervention delivery was discussed. The panel on Education explored how individuals with ASD and other NDDs have varying levels of skills and benefit from maximum time with same age typically functioning peers. Self-advocate, Dr. Stephen Shore emphasized the need for various models for appropriate education and variety of resources required for inclusion in all settings.

The Honorable Prime Minister of Bhutan speaking at the inaugural ceremony. Credit: Rohit Vohra, APF

A Special Session, featured self-advocates, Dr. Stephen Shore (USA), Daniel Giles (Australia), and Qazi Fazli Azeem (Pakistan) and a special guest Prime Minister  Dasho Tshering Tobgay. While each one’s experience was starkly different, it was an opportunity to showcase the uniqueness of ASD and how no two persons on the spectrum are truly alike.

Despite their differences in experiences, each of them has supportive families, friends, and a sense of community and belongingness. They emphasized the importance of individualized customized approach, the family as the central focus of services, developing a sense of self, as a pathway to effective self-advocacy.

The final day’s panels on employment and independent living focused on human rights and emphasized that the right to employment, earning and self-care is an important but often overlooked aspect of disability; the panellists, shared their successful models for training and living independently with varying degrees of support.

A Round-Table Discussion followed by the launch of the Regional Collaborative Framework for Addressing Autism by the Advisor for Mental Health (WHO-SEARO).

Government, civil society, and international organizations, as well as professional bodies and academia discussed the existing challenges of the treatment gap, lack of awareness and policies, stigma, paucity of financial, institutional and human resources, and the need for a coordinated response and intergovernmental collaboration for inclusive development.

A call was made to ensure cost-effective systematic response that is structured, coordinated and feasible for low-resource countries. In addition to panels, 11 technical workshops on the latest diagnostic and intervention tools, posters, and a side event of the international Early Childhood Development Task Force were held concurrently.

The Conference of 300 stakeholders from 31 countries not only adopted the Thimphu Declaration and Regional Collaborative Framework, but also compiled essential recommendations to ensure international resolutions are effectively implemented in the era of the SDG’s.

Following ANDD2017, the Royal Government of Bhutan has requested Shuchona Foundation to develop a multisectoral national strategic plan for ASD.

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Cover artists Dhrupod & Poshla with Saima Hossain at the launch of Unique Glimpses.

By Saima Wazed Hossain
DHAKA, Mar 29 2018 (IPS)

Shuchona Foundation is a not-for-profit policy advocacy, research, and capacity-building organization specializing in neurodevelopmental disorders (NDDs) and mental health. It is the culmination of the efforts to coordinate and mainstream policies and programs for mental health and NDD’s that began with the launch of the of the GAPH-Bangladesh in 2011.

Shuchona’s work is geared towards creating a productive and meaningful life for persons with any disabilities as included – not just integrated – members of society. As a low density-high impact entity, Shuchona’s aim is to foster innovation in the area of neurodevelopmental disorders and mental health; enable inclusion in social, economic, political and cultural progress; and mitigate the myriad challenges faced by persons with disabilities.

Shuchona Foundation acts as an effective bridge between national and international researchers, policy makers, service providers, and persons with neurodevelopmental disorders and their families to promote inclusion worldwide. Shuchona Foundation’s work cuts across every tier – from instituting policy framework to sensitivity trainings. The work is grounded on Shuchona’s core vision – that of enriching society with a universal support system and environment for persons with any disabilities to lead productive and meaningful lives in mainstream society.

2017 was a dynamic year for Shuchona, beginning with the launch of the book Unique Glimpses on 4^th April at the International Parliamentary Union Assembly in Dhaka, Bangladesh. The book edited by Saima Hossain showcased a powerful collection of artwork done by young artists on the spectrum from 2007-2015 that had been submitted to the Prime Minister’s office. Many of the artworks were subsequently awarded and used in the printing of the Prime Minister’s official greeting cards. The covers of the book were done by 2 young artists on the spectrum and contains a forward by the HPM Sheikh Hasina.

On 19^th April 2017 Shuchona organized a 3-day International Conference on Autism & Neurodevelopmental Disorders at the Royal Banquet Hall, Thimphu, Bhutan co-hosted by the Ministry of Health of both Bhutan and Bangladesh with technical support from WHO-SEARO and Ability Bhutan Society.

Shuchona Foundation staff and executive committee members with the Honorable Prime Minister of Bhutan at ANDD2017

Based on the theme ‘Developing effective and sustainable multi-sectorial programs for individuals, families and communities living with autism spectrum disorder (ASD) and other neurodevelopmental disorders (NDDs)’300 participants from 31 countries engaged in thematic panel discussions on community-based services about early identification, interventions,education,employment and ensuring rights &supported independent living.

The inauguration was graced by the presence of HM The Druk Gyaltsuen, Jetsun Pema Wangchuk as well asthe Prime Ministers of both Bangladesh and Bhutan, Regional Director of WHO-SEARO along with ministers of health, education and social welfare from around the region. Professionals, parents and self-advocates on every panel ensured a dynamic and insightful discussion took place in the presence of policymakers and international development organizations. The conference culminated with the launch of WHO’s Southeast Asia Regional Collaborative Framework on ASD and the adoption of the Thimphu Declaration.

Current Projects & Initiatives

Shuchona Foundation has developed a training program for the Ministry of Women and Children’s Affairs (MoWCA)on research-based information to enhance social and communication skills in children under 7 years of age which can easily be implemented at home and day-care centres.

On June 14^th 2017 this project was launched which will not only enhance development but would also lead to early identification of developmental delays and ensure that young children receive the assistance they need when they need it the most.

The Department of Disaster Management, Ministry of Disaster Management and Relief, in collaboration with the Centre for Disability in Development and Shuchona Foundation, organized a training on ‘Strengthening the capacity of crisis responders on addressing mental health issues within crisis preparedness and management’ in August 2017.

The training, for which a research-based manual has been developed, have been received by professionals from different ministries, national and international NGOs, and other organizations who work in the field of disaster management.

Shuchona Foundation is developing a comprehensive employment training program for persons with ASD in Bangladesh, in collaboration with Centro Ann Sullivan del Perú (CASP). Shuchona has been providing sensitization sessions to interested employers in diverse industries such as, leather manufacturing, apparel, IT and creative agencieson the benefits of employing persons with ASD, and the different ways in which it can be done. Through this supported employment program, Shuchona aims to help create better and more diverse job opportunities for persons with ASD in Bangladesh.

A 3-year pilot project on ‘A comprehensive approach to identify children with disability through capacity building of government and NGO health workers and disability service mapping in Bangladesh’ was formally launched in February 2018. This project is a collaboration between ICDDR,B, FAITH Bangladesh and UNICEF, and as technical advisor Shuchona Foundation is responsible for the design, selection of experts, technical components and training of experts. The project assesses feasibility of disability monitoring screening and referral to specialized intervention programs based on rural and urban settings.

In February 2018, Shuchona Foundation initiated a pilot program for the training of the school teachers for inclusive education. Currently being implemented at 2 private schools we hope to better understand the effectiveness of the training program and its efficacy in both low and high resource schools.

This is an attempt to support teachers in developing and expanding their own capacities to facilitate and support learners with diverse needs; help teachers become better at teaching all students together regardless of their abilities, disabilities or background of experiences. The training manual that has been developed based on the most current research on learning is currently being translated into Bangla.

Shuchona Foundation in line with its mandate of capacity building, has started providing technical training to professionals on various pertinent topics including a Foundation Course on ASD, Behavioural Interventions, Inclusive Education, Guide for Monitoring Child Development, Autism Diagnostic Observation Schedule and Parent Skills Training.

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Children's Cultural Program / Town Hall Meeting. Dec 14, 2015. Shilpakala Academy. Organized by Parents Forum for the Differently Able. A short play by nearly 30 children and youth with NDDs. Over 100 parents took part in the meeting asking a whole variety of questions and expressing their concerns related to NDDs.

By Saima Wazed Hossain
DHAKA, Mar 30 2017 (IPS)

Within the last 5 years, thanks to political support and national education, autism awareness in Bangladesh has grown immensely. Due to a lack of funds and resources, providing full comprehensive evidence based services for those in need is not yet possible, but with a continuation of our current progression, it is certainly an attainable goal. Credit for our tremendous success in providing public awareness and understanding of the challenges faced by families with autism is ultimately, thanks to the dedication and resilience of those very families.

Our mission for families began in the 1990s with the implementation of comprehensive disability policies along with the formation of national forums and disability organizations.

Since 2008, World Autism Awareness Day on April 2^nd is recognized and celebrated with a national event in Bangladesh. This event has involved a cultural show performed by PWD’s with our Honorable Prime Minister Sheikh Hasina as the guest of honor. Individuals and organizations were recognized for their work, while getting an opportunity to interact with the Prime Minister to express any concerns.

Despite progression of autism awareness in the population, the real turning point for change in South Asia came with the international conference on autism organized in Dhaka on July 25^th 2011. What differentiated this conference from others in the region was the integration of various individuals from scientific, personal, and political backgrounds. The presence of prominent political figures such as, Mrs. Sonia Gandhi, Prime Minister Sheikh Hasina, as well as many other First Ladies and ministers from the region, allowed our conference to be truly unique.

Saima Wazed Hossain

This event brought about an unprecedented change in the societal attitudes about autism and disability. Since then, previously rejected newspaper articles by parents and experts began to be regularly published in Bangladesh daily papers. Talk show discussions on health matters included the topic of disability. The word ‘autism’, which did not exist in our language has now become a household term, and frequently, if unfortunately, used as a synonym for disability — or as we say in Bangla ‘protibondhi’.

The conference was followed by the formation of 4 task forces comprised of parents and experts in the field. Additionally, I appeared in numerous television interviews where I described autism and shared a personal message to end discrimination and shame. At the recommendation of the task force, a parents’ forum was established followed by the formation of a national steering committee in 2013, comprised of 8 ministries headed by the highest non-elected government officials, which are supported by senior advisors and technical experts. This multi-faceted approach prioritized the need for early screening and intervention, supportive educational programs, employment training, and social safety net programs. This sent an important message to stakeholders and policy makers explaining how there is no easily addressed solution to autism which could be implemented by altering existing medical practices. Instead, a multi sectorial life span approach would be required to create a more cost-effective, sustainable and supportive program catering to families’ needs.

The complexity of autism and other NDD’s pose a significant challenge when trying to balance the development of medical services while creating socioeconomic opportunities for an individual’s unique skillset. The primary task of mitigating the tremendous emotional, social and financial ordeal for families remains a persistent challenge.
The last four years of multi-sectorial planning by the National Steering Committee has enabled the inclusion of disability in the government’s development and economic planning. With significant political support, the primary stakeholders, i.e. individuals with neurodevelopmental disorders (NDD) and their families continue to play a significant role in shaping policies and implementing programs. This involvement of several ministries ensures significant awareness for autism and all disability matters; however, our unique and comprehensive approach is challenged by a limited growth in human resource development and the lack of a mechanism for monitoring the efficacy of projects and fund disbursement to ensure sustainable evidence-based programs particularly in the social sector.

Global awareness and enhanced understanding of autism has resulted in increased diagnosis, demand for treatment and development of innovative approaches; many of which remain isolated to research settings or unpublishable in scientific journals. Additionally, due to the high cost and copyright laws many programs in low resources countries remain similarly isolated and unshared. Moreover, programs requiring linkages between existing infrastructures with inter and intra-disciplinary collaboration are a particular challenge for developing countries. Hence why we urgently need a mechanism by which the challenges and success stories of these individuals can be shared among both disability organizations and governments so it may provide further knowledge on effective, sustainable programs and assist in decision making.

The complexity of autism and other NDD’s pose a significant challenge when trying to balance the development of medical services while creating socioeconomic opportunities for an individual’s unique skillset. The primary task of mitigating the tremendous emotional, social and financial ordeal for families remains a persistent challenge.

This April, Shuchona Foundation with WHO-SEARO is paving the way towards implementation of international resolutions on autism by organizing a conference in Bhutan for the ministries of Health and Family Welfare of Bhutan and Bangladesh. Experts, self-advocates, caregivers and policy makers will meet for 3 days in Thimphu (visit www.ANDD2017.org) to discuss identification and interventions methods, issues on education and employment and help develop a collaborative comprehensive plan for low resource settings that all countries can emulate.

Saima Wazed Hossain is a Specialist in School Psychology, Chairperson of the Bangladesh National Advisory Committee for Autism and Neurodevelopmental Disorders as well as a Member of the World Health Organization’s Expert Advisory Panel on Mental Health.

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