Research Studies

Navigating Health And Education: Exploring The Journeys Of Children With Disabilities And Children Requiring Regular Medical Care

Introducing the study

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.

Read Full Report Below