Research Studies

ASTHA has always believed that children with disabilities must be seen very much within the context that they live in. The rights of children with disabilities must be the same as those extended to “all” children. In addition, all specific needs of children with disabilities and of children who remain marginalised must be provisioned for through special laws, policies, guidelines and other measures.

The idea for this study emerged from the belief that unless the context and specific needs of children with and without disability are acknowledged, the chances of them getting excluded from the system of education remain very high. ASTHA’s work and understanding is in the field of disability. The research studies conducted by ASTHA over the decades have looked at the child with disability within the context of their geographic and societal setting, the facilities available, and the multiple identities they live with. In studies conducted with children with disabilities, their families and key stakeholders across the country, the common thread was that unless specific provisions are mandated and extended, many children with disability get excluded from schools. There are also many other groups of children who get marginalised and are left vulnerable within the system of education – each of them with their own specific needs for support that often remain unseen and unaddressed.

The present study delves into the challenges faced by children with four different conditions namely children with Multiple Disability, children with Thalassemia, children undergoing treatment for Cancer and children who have had Japanese Encephalitis.
On the face of it, there seem to be no parallels between all four groups. While cancer is categorised as a ‘chronic disease’, the others fall under the category of disability. However, some children do develop a physical disability or vision impairment or communication difficulties consequent to treatment for cancer and thus get covered under the definition of disability. Some may even see a decline in their cognitive abilities. Children with thalassemia and those with multiple disability are covered explicitly under the Rights of Persons with Disabilities (RPWD) Act, 2016, while children with Japanese encephalitis often develop intellectual or physical disability as a consequence, bringing them within the purview of disability.
For this study, ASTHA met children with each of the four conditions and their families. While there were many issues, needs, challenges that were common to all children, each child also had some specific needs and challenges. Through interviews, the unifying elements across the diversity started emerging.

Education is crucial not only for the development of the individual but for society as a whole. It is instrumental for economic growth and sustainability as well as an important parameter to measure the development of the State. Education fosters the quality of effective and independent decision making in the individual and promotes democratic principles in society. States across the world acknowledge the importance of universal and inclusive education for the development of humanity. They have come together on the international podium to make the education human rights of children through various covenants. The signatories to these international covenants are obliged to bring legislations, schemes, and policies to provide universal and inclusive education. Despite such initiatives by various states, a large number of children especially from the disadvantageous section of the society do not have access to education. Children with disabilities continue to be an intriguing example of such children that remain devoid of their educational rights throughout the world. International covenants like Conventions on Child Rights, Human Rights and even United Nations Convention on Rights of Persons with Disabilities (UNCRPD); talks in length on the educational rights of children with disabilities yet, there is a growing concern about the groups of children who are excluded from education. It is a known fact that Children with Disabilities are the most disadvantageous across the Globe. Inclusion is seen as a process to overcome the Exclusionary Processes.

World over, education systems are having to grapple with new realities and a world filled with conflict, international migration and dissolving of borders. Alongside this are the new realities of the economic crisis, of the growing distance between the poor and the rich and the learning crisis that students face in systems that have not been equipped to deal with change. The year 2020 has been cited as the biggest disaster/crisis since World War II. The Covid 19 humanitarian disaster has brought both the world and education systems to a standstill for over a year now. Facing their biggest challenge ever, education systems across the world and in India are having to re-invent themselves. More than 1 billion1 children are said to be out of school.

Amongst these are the most vulnerable of children, children with disabilities, children who are homeless on the streets, children living in difficult circumstances all over the world. As the hunger and medical crisis deepened, many more children have become vulnerable. One such category of children is those who have lost both or one primary caregiver and are now orphaned.

At times like this, an ‘inclusive education’ system that takes every child along, assumes great significance. It must be the yardstick that we apply to any rebuilding and re-envisioning in education.

Education is crucial not only for development of the individual but for the society as a whole. The Constitution of India both under the Fundamental Rights as well as Directive Principles of State Policies has provided various provisions to ensure education to the people residing within the contours of the country. The State from time to time has been formulating and implementing laws and schemeswith an aim to ensure education to all. However, inclusive education has remained a distant dream as millions of the children belonging to disadvantaged section of Indian society, especially Children with Disabilities/Children with Special Needs continued to face discrimination in access to as well as accessibility in education. The Right to Education Act, 2009 which provided for free and compulsory education was the first novel step towards outlining the fundamental right to education for all children including the child with disabilities. The Centrally sponsored schemes of Sarva Shiksha Abhiyan and Rashatriya Madhyamik Abhiyan have tried to cater to the need of Children with Disabilities/Children with Special Needs however with minimal success.

Astha’s study is entitled ‘A comprehensive review of implementation of The Right to Education Act [RTE Act] from the perspective of children with disabilities and its effectiveness in ensuring full inclusion of children with disabilities.’ The aim of the study was to review the interpretation and effectiveness of the RTE Act by analyzing international and national policy and legal commitments. Besides the literature review to document the status of children with disabilities at the national level, direct experiences from the groundwere also woven in. The field level experience was documented in Khorda district of Odisha and Lucknow district of Uttar Pradesh. The Astha team had detailed discussions with the entire spectrum of stakeholders ranging from the parents of children with disabilities, teachers, members of School Management Committees [SMCs] and Panchayati Raj Institutions [PRIs], secretaries of the Departments of Education and Disability, Chairpersons of the State Commission for Protection of Child Rights [SCPCRs] and members of civil society organizations working extensively in the region. Astha also conducted interviews with different sets of SMC members, including parents, head- teachers, members of the local authorities, Anganwadi workers and others closely associated with the schools and the SMC.

During the discussions on the UNCRPD, people with disabilities underlined their deep vulnerability to all forms of violence and abuse in societies across the world. They singled out children, women and girls with disabilities as being particularly vulnerable to violence. Apart from that they made some important observations regarding the nature of violence towards persons with disabilities.
In INDIA:
Except for the National Trust Act, the four special lasws that address the needs and spell the rights of persons with disabilities do not define violence and abuse. Even in the National Trust Act the definition of what comprises abuse, neglect and violence is in the context of removal of a guardian appointed for the care of the person. It does not seek to put in place mechanisms for empowering the person to prevent these from happening or to access redress mechanisms himself/herself.