Situation analysis of autistic children
Children with developmental disorders and their families face major challenges associated with stigma, isolation and discrimination as well as lack of access to health care and education facilities
Dr. Shaker Uddin Ahmed
Children with Autism have clearly been among the most marginalised in Bangladesh when it comes to their education, health and social care and life opportunities. Lack of resources for children with disabilities such as qualified and trained teachers, appropriate infrastructure, teaching materials and assistive technology as well as stigma associated with disability are daunting barriers to special education and health care for special need children. Education for children with disability like Autistic Spectrum Disorder(ASD) is viewed as charity rather than as a right. Protection of Human Right is to ensure right to education as well as to ensure the equal right and opportunity for the people with disability. Human rights would be meaningless if they were not assigned a place within the social order in which they are to be exercised. The children with autism are always becoming the victim of discrimination and disparity. In Bangladesh, though Government has taken many initiatives to ensure the easy access to education but very unexpectedly autistic children are completely out of those consideration and privileges. Most of the Government Primary schools directly refuse to accommodate the autistic children in their institutions. Though, there are a number of organisations in Bangladesh working with various fields of disability, there is hardly any quality institution developed exclusively for the autistic children. The problem is further aggravated with the unavailability of centres to train trainers or teachers to work with autistic children. In addition. the available institutions in Bangladesh relating to autistic children are not effective.
Medical professionals in Bangladesh for a long time did not have proper understanding of neurodevelopment disorder like Autistic Spectrum Disorder(ASD). In the western developed countries, the medical and educational intervention for Autistic children started in the 1970s. Where as in Bangladesh, Autistic children was not even recognized as a specific category of disabled children even a few years back. Bangladesh adopted disability legislation Persons with Disability Welfare Act in 2001. This legislation defines persons with disability that identifies those with physical disabilities, visual impairment, hearing impairment, mental retardation/illness. Unfortunately, the Act does not include Autistic Spectrum Disorder and therefore the act does not cover any protection for Autistic children. Autistic children used to exist in Bangladesh, but their need has been ignored in Bangladesh because of lack of knowledge and expertise. As these children did not receive attention in the education and health sectors of the country, no professional expertise and infrastructure has been developed.
Autistic children are the most marginalised as Government has not built special schools for them. In Bangladesh NGOs are claiming to be working with children with ASD. But the centres they are operating are not registered as special schools under Depart of Education. They do not follow any national curriculum. They do not have any standing or accreditation as a special school. NGOs depend on donor funding to support the school they operate, which is not dependable in the long run. The right of children with ASD to health care is not realised due to absence of universal health care coverage in Bangladesh. There are lack of relevant medical professionals and drugs to address the special medical need of Autistic children.
Although Bangladesh has made significant progress towards achieving Education for All(EFA) with net enrolment of 95 per centin primary schools, the perspective of education for students with disabilities provide a different story. Mainstream school authorities refuse to enrol students with Autism In Bangladesh and children with Autism are out of schooling. Despite constitutional ground, lack of knowledge and awareness regarding disability remains one of key challenges to enacting a complete legislation for persons with disabilities in Bangladesh. Disability has been perceived as charity by policy makers and due to welfare attitude towards disability, the education for students with disability have not been considered as a right.
Children with developmental disorders and their families face major challenges associated with stigma, isolation and discrimination as well as lack of access to health care and education facilities. Basic human rights of children and adults
with developmental disorder are often abused. Health and Social care system in Bangladesh has not yet developed the capacity and infrastructure to provide services to children with ASD.
The initiative of the Government of Bangladesh to address the need of Autistic children has been so far limited to screening and diagnosis of Autism. Very little progress has been visible in intervention through regular schooling, medical and social care for these special need children. Bangladesh is yet to develop professional capacity, tools, mechanism, modules to address the special need of the Autistic Children. As Autism is a lifelong condition, special education, health and social care should be effective and sustainable. As a resource constrained country with several development challenges, the need of the Autistic Children have not been prioritised in the country.
There is no nationwide statistics of Autistic Children in Bangladesh. As per global prevalence rate, 1 per centof world population have autism. Since there are 55 million children in Bangladesh below age 14, there should be 550,000 autistic children in Bangladesh. To provide education for all these children, there should be at least 5000-10,000 special schools in Bangladesh with geographic coverage. But it is a frustrating situation that only a few private centres are found to be working with Autistic children and those do not have the status of a school. We do not find any public special school for Autistic children. Moreover establishing special school is not enough. If these schools are not linked with specialists services and clinical treatments in health sectors, the special need of the children cannot be met. Education, Health and Social care sectors need to work in partnership to provide specialist support to children with Autism. But such partnership does not exist in Bangladesh.
To protect the right of the children with neurodevelopment disorder, it is necessary to put in place governmental protective legislation, policies and monetary funding. In Bangladesh education and health departments have not put in place any standard or statutory provision which will be legally binding on schools and medical centres to ensure education and health care for special need children with complex need. In developed countries, there are statutory requirement to make Learning Disability Assessment (LDA) and Health and Care Plan for every child with disability to identify their learning and medical needs and make provision required to meet those needs. Local municipality/city council, special schools, clinics, hospitals, social care services work in collaboration to fulfil the statutory requirement. Unfortunately such provision does not exist in Bangladesh.
It is important to create life opportunities for Autistic children and add value to their lives. Autistic children are disabled child, at the same time they are specially able, which need to be identified and need to be provided with support to utilise their potential. If children and young people with autism are to achieve their best possible educational outcomes, including getting a job or living as independently as possible, local education, health and social care services must work together to ensure they get right support. Local authorities and health bodies must have arrangements in place to plan and commission education, health and social care services for children and young people with special educational need. Local authorities should ensure integration between educational provision and training provision, health and social care provision, where this would promote well being and improve the quality of provision for disabled child and young people. Local authorities need to ensure cooperation between childrens and adults services, so that children are not left without care and support as they make the transition from childhood to adulthood. Local authorities must ensure the availability of preventative services for adults, a diverse range of high quality local care and support services and information and advice on how adults can access this universal support. Local authorities need to assess the social care needs of individual children and young people with special need and local authorities and partners must have clear line of accountability for commissioning of services designed to safeguard and promote the welfare of the children and young adult. In Bangladesh such institutional capacity and provision do not exist.
In Bangladesh, Government must take giant steps to develop special schools and medical centres all over the country with public fund and only then state can formulate code of practice for the protection of the rights of special need children. While in a mainstream schools, teacher to student ratio can range from 1:15 to 1:30, for special schools the teacher to student ratio should be in the range 1:2 to 1:4. Moreover teaching a special need child is a challenging and difficult task. Teachers of special school must receive higher remuneration than teachers of mainstream schools otherwise teachers will not be motivated to take the challenging profession. Therefore significant funding is required for maintenance of special schools. In Bangladesh there are a few private organisations for Autistic children, but private organisations cannot be brought under legally binding provision. Government should take the responsibility to establish the legal framework, infrastructure, facilities and regular budget for education and care for Autistic children.
The World Report of World Health Organisation has put Bangladesh in the category of countries having an absent or dysfunctional health-care infrastructure. Bangladesh spends only US $ 16 per capita for health annually, a part of which again comes from development partner. The countrys tax base is small, only 9 per cent of GDP.
The public hospitals in Bangladesh has perennial problem of absenteeism of doctors and medical staffs and corruptions. The Public hospitals also lack equipment, facilities, proper infrastructure, adequate doctors/nurses, proper monitoring mechanism and system of accountability. Absence of strong local government system has made the public hospitals and health centres guardian-less. There is currently neither monitoring mechanism for seeking redress against the violation of right to health, nor for holding the violators accountable. The doctors and other service providers, therefore, get immunity of their negligence, inefficiency or wrong treatment causing severe health hazards and suffering of patients. When the general mass of the country are not receiving proper and quality health care, we can imagine worse situation for the disabled children in Bangladesh. Health care system of the country must improve to make provision of good health care support and intervention for the special need children.
The writer is Assistant Professor Royale College of Medicine Perak University of Kuala Lumpur
