Autism and Neuro-developmental disorder expert Saima Wazed has said the socio-economic and cultural realities requires Bangladesh to adopt a comprehensive approach to address disability issues after the country’s initial achievement in mainstreaming the problem.
“Without a comprehensive government-monitored programme to address these issues, those with disabilities and special needs cannot hope to become active participating members of society,” she told as the keynote speaker recently at an ICDDR’B sponsored seminar on disability issues.
Chairman of National Advisory Committee on Autism and Neuro-developmental Disorders, Saima, however, noted that despite many social, economic, political and environmental challenges Bangladesh made tremendous progress in bringing the issue of disability to the forefront.
She said Bangladesh ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) while its constitution guaranteed their rights protecting them from a state of discrimination. On the other hand, she said, the country launched Global Autism Public Health Initiative in 2011 through which “we have significantly addressed our primary challenge, social stigma which permeates all aspects of our society”.
Saima, also a member of Expert Advisory Panel on Mental Health of World Health Organization (WHO), said, moreover, Bangladesh adopted a unique approach to addressing our needs “using the platform of a complex neuro-developmental disorder like autism” while two related specific legislations were enacted in recent years.
Yet, she said, nearly one million people with disabilities in the country were suffering from “limited employment and educational opportunities, social discrimination and stigma”.
Saima said the situation was compounded by “inadequate financial support, insufficient services, a limited number of trained professionals, and fragmented policies and procedures”.
She said the aim of the campaign for people with disability should to formulate programmes and services that would ensure their access to “medical, educational and employment opportunities throughout their entire life”.
“In order to fully address the needs of those with disabilities (especially complex ones like mental health conditions and neurodevelopmental disorders), our approach has to be multi-faceted, comprehensive and integrated within other community based programs, whether they are health, social support, educational, or financial,” Saima said.
She pointed out that in the community level families with disabled children “often experience insensitive remarks, discrimination and humiliation”. “In Bangladesh, parents of children with special needs live in a culture within a culture where sometimes even the extended family does not interact in a positive and supportive manner,” Saima said.
Moreover, she said, parents, particularly mothers, are often blamed and shunned, and sometimes even abandoned, for having a child with a disability.
“The lack of understanding, coupled with the condemnation and personal guilt that parents are made to experience, is outrageous and appalling . . . In South and South-East Asia disability is not just a medical issue; it is a human rights issue.”
Officials earlier said Bangladesh recently constituted a National Steering Committee for Neuro-developmental Disabilities and Autism comprising eight relevant ministries.
The committee developed convergent and strategic action plans based on their existing budgets and scope of services while its activities are overseen by the National Advisory and a Technical Guidance Committee composed of both parents and experts.
Saima noted that two national level survey projects, one being a door to door survey for all disabilities and the second being, a pilot screening project for developmental disorders in children through the community health clinics, were carried out under the government infinitives in recent period.
“(But) we have yet to conduct a comprehensive nationwide epidemiological study that would accurately portray the number of children and adults with debilitating neuro-developmental disorders such as autism,” she said.
Saima suggested development of a “cohesive and reliable educational classification system for special needs, adequately monitor services and programs, develop standards and goals”.
She also stressed continued training for professionals serving the people with disability under a system while the “comprehensive approach” should include the issues of intervention, parents and stakeholders, awareness and education. “In addition to the immeasurable burden experienced by the individuals concerned and their families, the economic hardship associated with dealing with these issues can be particularly profound in countries with limited financial resources, such as Bangladesh,” Saima said.
“The only way that the needs of those with special needs will be adequately addressed is if policy makers, government bodies, professional organisations and parents work together in partnership.”
