People with disabilities are among the most adversely affected during conflict situations or when natural disasters strike. They experience higher mortality rates, have fewer available resources and less access to help, especially in refugee camps, as well as in post-disaster environments. Already subject to severe discrimination in many societies, people with disabilities are often overlooked during emergency evacuation, relief, recovery and rebuilding efforts.
Countries party to the UN Convention on the Rights of Persons with Disabilities must take all necessary measures to ensure the protection and safety of people with disabilities during situations of armed conflict, humanitarian emergencies, and natural disasters. Such aid should be designed to support preparedness, response, recovery and rebuilding. This book includes perspectives from around the globe and explores the implications at the policy, programme and personal level.
Spotlighting a pressing issue that has long been neglected in emergency planning fields, this book discusses how to meet the needs of people with disabilities in crises and conflict situations. It is an important reference for those working in or researching disability and inclusion, and emergency and disaster management.
DISABILITY IN BANGLADESH: THE EVOLUTION OF PROGRAMMES AND SERVICES – SAIMA HOSSAIN
Bangladesh, a country no larger than the State of Wisconsin, has a population of over 160 million people. It is currently one of the top three most densely populated countries in the world. In centuries past, Bengal, as it was
known, was the centre of culture, learning, and trade, yet today it is struggling to earn the right to be called a middle-income country. Though rich in natural and human resources, persons with disabilities, particularly those living below the poverty line, remain the most vulnerable members of society in conditions of war, political strife, exploitation and a lack of planned development of infrastructure and social safety net programmes.
Adding to the many challenges facing the country, Bangladesh is a delta region that experiences floods, minor earthquakes, droughts, tsunamis, cyclones and soil erosion. Environmental changes brought about by global warming have resulted in an increase in the frequency and intensity of many of these natural disasters, thereby increasing the number of people who are displaced, impoverished and also disabled every year. Compounding the environmental challenges, the people of Bangladesh are also frequently victimized by recurring political conflict and acts of terrorism. This chapter will briefly summarize how service provisions for people with disabilities have evolved in the country despite limited resources and competing needs.
Bangladesh was declared an independent state from West Pakistan in 1971 after an intense nine month long civil war. However, the history of persecution of the Bengalis does not begin and end there. The political, economic, and social persecution began soon after the creation of East Pakistan in 1947. From 1947 to 1971 all economic and social development programmes remained where the government was seated in West Pakistan despite the fact that the industries, farmlands, and majority of the population of both Pakistans were in the eastern province. During the civil war, nearly three million people were murdered and thousands of women and girls were raped during the genocide. In addition, roads, bridges, and factories were destroyed, and many of the educated elite were assassinated by the military. Only three short years after its birth, the country was again thrown into turmoil with the assassination of its founder and first president Bangabandhu Sheikh Mujibur Rahman (along with 18 members of his family) as a result of a coup d état. The return of military dictatorship meant that government policies for the next two decades paid little attention to the needs of those with disabilities, despite a constitutional mandate for equality and nondiscrimination.
In 1991 the parliamentarian system was once again restored and the Bangladesh government was mandated by the people to follow the spirit of the Constitution.
Article 28 of the Constitution states: The state shall not discriminate against any citizen on the grounds of religion, race, caste, sex or place of birth and that no person shall be subjected to any disability, liability, restriction or conditions with regard to access to any place of public entertainment or resort or admission to any educational institution.
This Article has formed the basis for all human rights mechanisms in the country, including its laws and policies, and has also allowed the state to accede to all such international human rights instruments.
The Ministry of Social Welfare was created in 1971 with the express purpose of addressing the needs of disabled war veterans, abandoned women, orphans and other minority groups. It is responsible for implementing programmes that provide allowances, aids and grants for the elderly, persons with disabilities and acid burn victims. It runs programmes that are multidimensional and their primary purpose is to see to the welfare of those who are ‘bypassed, disadvantaged segment, unemployed, landless, orphans, distressed, vagrants, socially, mentally and physically handicapped, poor, helpless patients, juvenile delinquents’. However, no comprehensive policies and programmes were undertaken until 1995 when a national policy on disability was adopted. This formed the basis for new policies and programmes by the Ministry and also resulted in the formation of several NGOs focused on conducting research as well as implementing programmes and services developed specifically for the needs of those living below the poverty line. In 2001, Bangladesh passed the Disability Welfare Act and set up an inter-ministerial task force on disability and has made significant strides towards meeting the goals of the UN Convention on the Rights of Persons with Disabilities (CRPD).
CRISIS, CONFLICT AND OTHER CHALLENGES
The geographical location of Bangladesh is such that it is prone to cyclones/tornadoes, earthquakes, floods during the monsoon season, and droughts. As these natural phenomena have become somewhat more severe in nature, their impact on the population has also increased due to greater deforestation, urbanization, and pollution, etc… According to the Disability Rights Watch Group, the last 35 years has witnessed 38 severe cyclones, two of which resulted in extreme loss of life and property: Cyclones Sidr in 2007 and Aila in 2009, to which can be added Mahasen in 2012. These events have affected the livelihood opportunities of everyone living in the affected areas, in particular the most vulnerable of the population: those with disabilities who are living in poverty. In addition, the lack of proper urban planning and poor housing structures result in physiological injuries, and therefore an increase in the number of persons with disabilities. Flying sheets of corrugated metal are one of the causes that have been recorded as a reason for loss of limb and life as reported by the Centre for Services and Information on Disability (CSID) in 2002. It stated that the increased use of tin roofs in rural homes (from the traditional thatch) can actually become a safety hazard during thunderstorms and tornadoes. In crowded urban areas, structures are being built without adequate planning and regulation, thereby increasing the possibility that buildings may not withstand the rising waters, high winds and earthquakes, causing an increase in the number of persons with disabilities or exacerbating existing disabilities.
Other significant deterrents to accessibility are the poorly designed roads, highways and buildings. Although the law has been changed to ensure that all new government structures, including schools, will have ramps and wheelchair accessible washrooms, there is limited scope for changing existing structures. Further, public transportation facilities have not incorporated any accommodations for use by those with disabilities.
SERVICE DELIVERY MECHANISMS
Disaster relief. In 2010, the Ministry of Food and Disaster Management developed a new matrix, called the National Disaster Response Plan 2010-2015, highlighting the needs of persons with disabilities. This plan provides an outline by which families living with a disability can receive assistance prior to a natural disaster. In addition, the Ministry of Social Welfare and NGOs have developed specific strategies allocating responsibilities to different government departments. Information flyers have been produced to educate disaster relief workers to help them understand the challenges and needs when assisting families living with a disability. It should be mentioned, however, that although the plan specifies the need to assist families with disabilities, it does not include any differentiated strategies for the different disabilities.
Ensuring equal rights. Through the Ministry of Social Welfare in 1999, the semiautonomous National Foundation for Development of the Disabled Persons (Jatio Protibondhi Unnayan Foundation, or JPUF) was created to implement disability-related programmes and services to distribute loans, stipends, grants and other services free-of-cost to persons with disabilities. It also provides free therapy and counseling, runs one-stop service centres, provides devices to increase mobility and functionality (by providing and maintaining various kinds of mobility devices, seeing canes and hearing aids), and maintains a library of resources, such as braille books, internet access, and engages in information dissemination activities. Although starting with a modest annual budget, currently there has been a dramatic increase in both funding and the dissemination of services through a variety of service models. Through Centres for the Assistance and Services of the Disabled (Protibondhi Sheba O Sahajya Kendro), launched in 2009, provisions have been made for free therapeutic services for both children and adults in their communities, and a registration process (and identity cards) is being developed to prevent fraudulence and to ensure that the neediest receive services and funds expeditiously.
EDUCATIONAL AND VOCATIONAL SERVICES
There are no standardized state-provided educational and vocational training programmes for people with disabilities. However, several NGOs have developed unique employment and entrepreneurial training programmes based on local needs. At present, there are integrated schools for those with visual impairments in each of the country’s 64 districts, providing services to 640 children.
Under the auspices of JPUF, nearly 8,000 children with disabilities are currently receiving education through 55 special needs schools that are run by two separate NGOs (the Bangladesh Protibondhi Foundation and the Society for Welfare of the Intellectually Disabled).
Currently, the Ministry of Secondary Education is working on a new education policy, which, for the first time, has components to enable the inclusion of children with disabilities in mainstream schools. As test cases, in the 2012 10th grade board exam, five students were given 15 extra minutes to complete the test and also provided with peer assistance for those who needed it. Results showed that those five students earned some of the highest scores nationwide. Despite this success story, whether the inclusion model will be implemented is as yet undecided. The biggest challenge for the inclusion model is minimal teacher training and a lack of necessary professionals to support the schools.
Bangladesh is also challenged by a severe shortage of professionals trained in rehabilitation. Through the Centre for the Rehabilitation of the Paralyzed (CRP), which was established in 1979, and an agreement with Dhaka University, a training programme has been established in order to train physical, occupational and speech and language therapists, as well as various vocational and occupational training for adults with disabilities.
Health care services for persons with disabilities, is sorely challenged in Bangladesh due to inaccessibility. The limited scope for service delivery at the community level for the prevention and reduction of non-communicable diseases, coupled with inadequate service delivery at local levels in many situations, cause or magnify various disabilities. In addition, there is no disability-related or public health training programmes in Bangladesh. One of the biggest challenges for persons with disabilities in Bangladesh results from the allocation of all disability related issues solely under the Ministry of Social Welfare. This makes it challenging for the Ministry to address the medical, educational and employment needs of persons with disabilities in a comprehensive manner. However, through the establishment of Centre for Neurodevelopment and Autism in Children (CNAC) in the only post graduate medical university in Bangladesh, the Bangabandhu Sheikh Mujib Medical University (BSMMU), an institution under the Ministry of Health and Family Welfare, health professionals and community based health workers are being made aware of the health needs of those with disabilities and given comprehensive training. In order to address the needs of children with disabilities, in 1992, community-based Child Development Centres (Shishu Bikash Kendro) were launched to provide services for those with developmental disabilities and neurological impairments. Multidisciplinary teams of developmental therapists, psychologists, neurophysiologists, and physicians conduct neurodevelopmental screenings and therapeutic interventions at these centres.
FOCUS ON MENTAL HEALTH AND AUTISM
In order to bring greater focus on the needs of children with autism and mental health issues, the Government has partnered with Autism Speaks and the World Health Organization (WHO) and launched the Global Autism Public Health Initiative (GAPH). On 25th July 2011, a landmark international conference was organized in Dhaka that was attended by more than 1000 delegates from 11 countries and four high level dignitaries from regional countries. The conference witnessed the unanimous ratification of the Dhaka Declaration on Autism Spectrum Disorders and Developmental Disabilities and launched the first regional network on ASD (Southeast Asia Autism Network or SAAN). The GAPH Bangladesh Initiative is an innovative, integrated approach that focuses on three areas: enhance awareness, research and services. The tremendous awareness generated by the conference both in Bangladesh and the region has brought the issue of children’s mental health and developmental disabilities like autism to the forefront of the public health system in Bangladesh and South East Asia.
A GAPH National Advisory Committee comprised of parents, professionals and government officials composed a Situation Analysis on Neurodevelopmental Disabilities and Autism for the first time in Bangladesh. The Situational Analysis highlights the need for; (1) community awareness and empowerment; (2) research and statistics on the public health burden of autism; (3) training that focuses on building capacity to provide specialized services to individuals with autism and developmental disabilities; (4) greater inter-ministerial convergence and coordination; and (5) standardization and monitoring of services and service providers. In order to address the needs of the community in a comprehensive manner, eight Ministries (Health, Primary and Secondary Education, Social Welfare, Women and Children, Labour and Employment, Finance, and Local and Rural Development) formed a Steering Committee on autism and related disorders and developed a strategic action plan that was formally presented to the President of Bangladesh in July 2012. The main objectives are to facilitate collaboration among local stakeholders, experts, and government officials to develop comprehensive policies and standardized training programmes for those working with persons with neurodevelopmental disabilities.
In 2010 the Ministry launched a community health programme in order to get medical services to the remote rural areas of the country. Community health workers are set to receive training on developmental disabilities in order to implement early screening and intervention. With guidance from the WHO, a training manual on autism spectrum disorders and developmental disabilities was developed specifically for community health workers. This manual is in the process of being launched and content will be incorporated into on-going training modules. This is the first time that medical professionals will be receiving any training on what is typically considered a nonmedical issue in Bangladesh. In addition, general practitioners, pediatricians will also be trained to conduct screenings for developmental delays.
On September 7th 2012, the Ministry introduced a resolution on autism at the 65th annual meeting of WHOSEARO. Adopted unanimously, this resolution led to the first high-level meeting of ministers for the South Asia Autism Network (SAAN) on 11th February 2013 in New Delhi organized by the Ministry of Health and Family Welfare, India. Attended by ministers of health from Nepal, Indonesia, Timor L’este, Sri Lanka, Thailand, Bhutan, Bangladesh, India and nearly 500 experts from the region, the meeting witnessed the adoption of the Delhi Pledge for SAAN. The meeting afforded government officials and policy makers, as well as local and international autism content experts and stakeholders, to share their strategies and identify partnership and development opportunities among countries across the region. With the goal of enhancing support for individuals, families and communities affected by ASD worldwide, the government of Bangladesh tabled a new UN resolution titled, ‘Addressing the Socioeconomic Needs of Individuals, Families and Societies living with Autism Spectrum Disorders and other Developmental Disabilities’ (A/RES/67/82) [UN Resolution]. With the support of 71 co-sponsors, the resolution was unanimously adopted on December 12, 2012. The resolution calls for member states to enhance services, increase public and professional awareness of ASD, build research expertise, and promote inclusive education and the full participation of individuals with autism and developmental disabilities in all facets of society. The recommendations highlighted in the Resolution serve as a road map for member states, in addition to international non-governmental and UN agencies, looking to promote the rights and improve the lives of individuals affected by autism.
In addition to the UN adoption, the resolution for ‘Comprehensive and Coordinated Efforts for the Management of ASDs’, introduced by Bangladesh and co-sponsored by 53 countries, was adopted by the Executive Board of the WHO on May 30, 2013 and will be formally placed at the Sixty-eighth World Health Assembly in 2014. The resolution encourages the implementation of the comprehensive mental health action plan 2013-2020 and the WHA66.9 resolution on disability to scale up care for individuals with autism spectrum disorders and other developmental disorders, as applicable, and as an integrated component of the scale-up of care for all mental health needs.
CHALLENGES AND SOLUTIONS FOR THE FUTURE
Bangladesh, challenged by high population density, natural disasters, political conflict, poverty and low literacy, was one of the first countries to sign both the CRPD and its Optional Protocol in 2007. Despite its commitment to persons with disabilities, current services and programmes lack standardization, inter-agency coordination, quality control mechanisms and standardized training of skilled and semi-skilled professionals. There is a significant lack
of data on how many persons are disabled and whether the assistance they are receiving is positively impacting their lives. In addition, no regulatory body exists to either measure the quality of current services or reprimand organizations that fail to meet appropriate standards of care. And, most importantly, families have very limited scope to seek legal action. It is estimated that there are nearly 300 NGOs registered with the Ministry of Social Welfare, yet only 20 per cent of those with disabilities actually receive any support. The country’s education system does not have a cohesive and reliable system for identifying and supporting children with disabilities, and no set standards exist for training professionals or paraprofessionals providing services.
The Government has constituted a National Human Rights Commission under the Ministry of Social Welfare, which is entrusted with the responsibility to act as a watchdog for establishing the rights and fundamental freedoms of all citizens, especially those who are most vulnerable, in order to ensure the rights and privileges of persons with disabilities and to meet the goals of the Disability Welfare Act passed in 2001. The Act has been in the process of being updated for the last two years in order to incorporate and re-categorize mental health and autism.
Other significant impediments to accessibility are the poorly designed roads and buildings. Although the law has been changed to ensure that all new government structures, including schools, will have ramps and wheelchair accessible washrooms, there is limited scope for changing the existing structures. Further, public transportation facilities have not incorporated any accommodations for use by those with disabilities.
Despite its many challenges, Bangladesh is now poised to transition from a low income country to a middle income country. There has been significant progress in its economic growth, child and maternal health, and technology infrastructure as indicated by its success in meeting several of the Millennium Development Goals set by the UN. Even so, there is little evidence to indicate whether or not the country is meeting the needs of all, including those with disabilities. In Bangladesh, persons with disabilities are suffering from limited employment and educational opportunities, social discrimination and isolation. Bangladesh’s situation is compounded by inadequate financial support, insufficient services, a limited number of trained professionals, and fragmented policies and procedures. For the first time in its history, the government has taken significant steps in developing comprehensive programmes to address these issues without which those with disabilities cannot hope to become active and participating members of society. Until and unless a regulatory body can be created that establishes and monitors a standard of care, persons with disabilities will always remain vulnerable to abuse and exploitation in Bangladesh, especially during conflicts and disasters.