The current administrative arrangements do not seem to have brought the required equality and equity to children with disabilities, nor have they adequately addressed the challenges faced by them, although some headway has been made over time. A high-level State agency is needed for policy formulation, to coordinate the implementation of policies, and for monitoring progress.
UNICEF states that “The Convention on the Rights of the Child (CRC) recognizes the human rights of all children, including those with disabilities. Along with the CRC, the Convention on the Rights of Persons with Disabilities (CRPD) provides a powerful new impetus to promote the human rights of all children with disabilities.” According to the CRPD, children with disabilities “include those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis.” Children with disabilities are a highly diverse population group. They include children who were born with a genetic condition that affects their physical, mental, or social development; those who sustained a serious injury, nutritional deficiency, or infection that resulted in long-term functional consequences; or those exposed to environmental toxins that resulted in developmental delays or learning disabilities. Children with disabilities also include those who developed anxiety or depression as a result of stressful life events.
Nearly 240 million children in the world today have some form of disability. This estimate is higher than previous figures and is based on a more meaningful and inclusive understanding of disability, which considers several domains of functioning, including those related to psychosocial well-being. Most children with disabilities have difficulties in just one functional domain. Psychosocial issues predominate at every age, in some cases in combination with other functional difficulties.
The following extract from a report published by UNICEF Sri Lanka summarizes the situation of children with learning disabilities in Sri Lanka, although there is no comprehensive data on the overall status of children with disabilities in the country. UNICEF Sri Lanka says that “too many children living with disabilities are missing out on the benefits of education.” In 2016, UNICEF Sri Lanka commissioned the Learning Disabilities in Sri Lanka report, and it found that:
- 23.5% of children aged 5-14 with disabilities are excluded from mainstream education (DCS, Statistical Data 2012) and amongst those who do attend mainstream schools, participation in educational activity reduces with age.
- Around 55.4% of the disabled population aged 15-19 and 86% of the disabled population aged 20-24 are not engaged in any educational activity or vocational training.
- The main challenges for children living with disabilities in benefiting from education include a lack of skilled teachers, a lack of appropriate infrastructure in schools, limited scope in curricula, and the overall quality of education.
In Sri Lanka, the main providers of education for children with special needs are special education units attached to schools, special schools under the Ministry of Education, and a limited number of private institutions. In keeping with the Gazette proposals of 1997, the Ministry of Education has issued circulars to schools and regional offices to ensure that children with learning disabilities in each educational division have access to special schools and special education units.
At present, Sri Lanka has:
- 27 special schools and 704 special education units catering to students with a variety of learning disabilities.
- 8 special schools and 450 special units catering to children with learning disabilities such as Down syndrome, cerebral palsy, and autism.
- A government-run Autism centre in Maharagama.
The number and quality of these schools and units are insufficient and require expansion and quality improvements, meaning that children with disabilities are missing out on avenues to achieve their inherent potential.
As stated earlier, a factor that is related to facilities for children with disabilities, whether in education or in health, is the absence of comprehensive information and statistics regarding children with different types of disabilities. The lack of comprehensive information has a direct impact on the provision of required facilities for them. Infrastructure planning, education planning, teacher training, family support planning, and related service planning are more or less ill-planned, and one could say planning has been based on limited surveys and research work.
In Sri Lanka, besides the inequalities and inequities experienced by children with disabilities, they face many other challenges such as social stigma and mental stress, which in turn causes stress for their carers, mainly their mothers and families. As mentioned by UNICEF, diversity within children with disabilities includes children who were born with a genetic condition that affects their physical, mental, or social development; those who sustained a serious injury, nutritional deficiency, or infection that resulted in long-term functional consequences; or those exposed to environmental toxins that resulted in developmental delays or learning disabilities. Children with disabilities also include those who developed anxiety or depression as a result of stressful life events.
It is therefore clear that the psychological situation of children with disabilities and of those close to them is a major challenge that needs to be heeded and addressed through a mind-healing process. It is unclear, though, whether the present policies and practices address this challenge and whether more attention has been given to addressing physical challenges rather than psychological ones.
It is in this context that the Walpola Rahula Institute (WRI), which considers that most people, to varying degrees, have mental wounds that require healing, recently conducted an initial awareness program on children’s disability with the participation of experts in this area as panellists. Six sessions were broadcast on their YouTube channel Panshu. Experts who participated as panellists were in unison that awareness of children’s disability and issues associated with disability, the social stigma that accompanies disability, the intense stress placed on those affected and those caring for them where care is required, especially the mothers of children affected, the lack of educational and other opportunities for the children, infrastructure shortcomings, and a host of other issues were major concerns that needed to be addressed. While acknowledging advances made in this regard, the panellists opined that greater coordination of policy development, implementation, and monitoring of policies was an urgent need. The need for more attention on psychological wounds and the need to address them were also emphasized.
A key recommendation arising from these sessions was that a high-level State institution with sufficient overarching powers and direct access to all agencies, including relevant ministries and departments, was an urgent necessity to address the human rights issues of children with disabilities. Further, to maximize the efficiency and effectiveness of such an entity, it should report directly to the office of the President or Prime Minister and be responsible for implementing a 10-year strategic plan to address relevant challenges.
The government and civil society organizations have a crucial role in moving forward from a charity perspective to a rights-based approach towards children’s disability. While the country’s laws, government services, non-governmental services, international organizations, private sector services, and voluntary organizations have provided and continue to provide varying degrees of services to children with disabilities, it does not appear that parents, guardians, families, and teachers are given adequate awareness of the conditions—mental, physical, and psychological—of these children. Consequently, such children are generally seen as permanently sick, requiring charitable kindness, and as being unequal to other children regarded as “normal.” Furthermore, while there are sporadic instances of community support for parents and families of children with disabilities, organized support, especially psychological, physical, and financial, particularly for the mothers who are the main caregivers, is virtually nonexistent.
While children with disabilities do require the utmost kindness:
- A paradigm shift is perhaps needed in viewing such children as diverse, not disabled, and as individuals equal to any other human being. Research has shown the social stigma associated with differently-abled children and how they are treated at home and in schools. There appears to be a lack of research and assessments on this aspect, including the impact on families arising from such social stigma.
- It does not appear that adequate measures have been taken to explain the nature of conditions—mental, physical, and psychological—and the resulting behavioral patterns of children to parents, families, and teachers.
- Additionally, it does not seem that the impact on children with disabilities of how they are treated by others has been thoroughly assessed. While such studies are difficult to conduct, if done, they could provide valuable information for improving the well-being of children with disabilities.
It is hoped that mainstream media will join in conducting similar, ongoing awareness programs to reach the important audience of parents, guardians, families, and teachers, so that all children, whether abled or disabled, will be regarded as equals in homes, schools, and society at large.
It is further hoped that the relevant authorities take heed of the observations and recommendations presented following the conclusion of the initial awareness program conducted by the Walpola Rahula Institute and act on them to address the human rights shortcomings of children with disabilities.
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