Bangladesh has ratified the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD). Moreover, pursuant to constitutional guarantees of equality and non-discrimination enshrined in Article 28 of the Bangladesh Constitution, specific laws have been passed to safeguard the rights of persons with disabilities. Despite these constitutional protections, nearly one million people with disabilities in Bangladesh are suffering from limited employment and educational opportunities, social discrimination and stigma.
Not Just a Medical Issue
The situation in Bangladesh is compounded by inadequate financial support, insufficient services, a limited number of trained professionals, and fragmented policies and procedures. Without a comprehensive government-monitored program to address these issues, those with disabilities and special needs cannot hope to become active participating members of society.
South-East Asian countries share similar social and cultural beliefs: college education is highly valued, families are close-knit and interdependent, and social structures are more intricate than in western societies. This can be both a source of support and a cause of greater complexity. Unfortunately, what often happens for many with complex genetic conditions, such as autism spectrum disorders (ASD), is that fear, misunderstanding and lack of information lead to social isolation and economic hardship.
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. 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-East Asia disability is not just a medical issue; it is a human rights issue.
Despite our many social, economic, political and environmental challenges we have made tremendous progress in bringing the issue of disability to the forefront. Through the Global Autism Public Health Initiative launched in 2011, we have significantly addressed our primary challenge, social stigma which permeates all aspects of our society. Using the platform of a complex neurodevelopmental disorder like autism, we have adopted a unique approach to addressing our needs.
We have created a National Steering Committee for Neurodevelopmental Disabilities and Autism comprised of 8 relevant ministries who have developed convergent and strategic action plans based on their existing budgets and scope of services. This committee is guided by The National Advisory and a Technical Guidance Committee composed of both parents and experts. Two specific legislations have been enacted in this regard in recent years: the National Trust Act for Neurodevelopmental Disabilities 2013 and Disabled Persons Right and Security Act 2013.
Although two national level survey projects have been conducted, one being a door to door survey for all disabilities conducted by Ministry of Social Welfare and the second being, a pilot screening project for developmental disorders in children through the community health clinics, we have yet to conduct a comprehensive nationwide epidemiological study that would accurately portray the number of children and adults with debilitating neurodevelopmental disorders such as autism.
We need to develop a cohesive and reliable educational classification system for special needs, adequately monitor services and programs, develop standards and goals, and also set up a system of ongoing training for professionals serving this population. In many towns and villages, treatments offered by traditional healers are still often seen as the only option for a child with mental health or developmental issues. As a result, access to appropriate and necessary medical care and early interventions, which are absolutely critical in reducing the impact on critical developmental milestones, is severely limited.
A Comprehensive Approach
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. The aim of such an approach would be to formulate programs and services that enable persons with disabilities to access medical, educational and employment opportunities throughout their entire life.
The salient features of such an approach should include:
a) Interventions: Interventions which are not only evidence-based but also culturally sensitive and economically feasible. There has to be interagency cooperation and collaboration, in order to develop early detection programs and intervention services which are incorporated within the existing health, educational and social support systems.
b) Parents and Stakeholders: Empowering parents so that they can be partners in the treatment process and informed advocates for their loved ones. Often they are the ones best placed to assess the individual needs of their children with disabilities. Their informed role is also crucial for early identification. If we can identify children at a very early age, then provide them with research based interventions many physical, mental and developmental challenges can be reduced and even reversed. There must also be opportunity for stakeholders to engage policymakers.
c) Awareness and Education: More action is needed to urgently remove the stigma that is associated with disabilities, particularly for mental health and neurodevelopmental disorders. Conducting targeted awareness campaigns that focus on not just removing myths and prejudices abut actually help inform the lay person about scientific information. We need educate the general public, professionals and decision makers, by disseminating information that contains research based information and challenges the many myths that exist about disabilities.
d) Training of Professionals: Enhancing knowledge base and skill levels of professionals working in not just the disability sector but also in the health, education and labor sector; including disability specific content in the curriculum of doctors and allied health professionals, teachers and school administrators, as well as social support workers. This is particularly necessary for mental health and developmental disabilities such as autism. Investing in research and training of clinical professionals in the latest diagnostic and treatment tools.
e) Laws, Polices and Programs: Creating new legislation, policies, programs and procedures which are culturally sensitive, economically feasible and ensures that the human rights of those with ASD are promoted, protected and realized. These must be based on scientific evidence, be supportive of families and enable inclusion in all aspects of society. Incorporating disability specific issues in all existing development programs so that they may be feasible and sustainable by governments, and have the opportunity to grow further.
f) Collaboration: Only through regional collaborations between organisations and political leaders can those with special needs hope to become independent and productive members of society. International organisations, such as the United Nations and the World Health Organization, also need to urgently take greater measures to address the needs of children with special needs and their families.
In addition to the immeasurable burden experienced by the individuals concerned and their families, the economic hardship associated with dealing with mental health issues can be particularly profound in countries with limited financial resources, such as Bangladesh. The only way that the voice of those with special needs will be adequately addressed is if policy makers, government bodies, professional organisations and parents work together in partnership. The ultimate goal of all such efforts whether taken at the national or community level should be to ensure that those with disabilities have a say in the decision making process and can fully be included in all aspects of society.
Saima Wazed Hossain is Chairperson, National Advisory Committee on Autism and Neurodevelopmental Disorders, Bangladesh and Member, Expert Advisory Panel on Mental Health, World Health Organization.