Association of Child Neurology-Indian Epilepsy Society Consensus Document on Social and Legal Aspects of Childhood Epilepsy (SOLACE)

摘要

Epilepsy is a chronic neurological disorder which affects not only the health of the affected child, but also has an economic, psychological and emotional impact on the family as a whole. In the transition from Person with Disability (PWD) act (1995) to Rights of Persons with Disabilities act (RPWD act) (2016), which covers all aspects of life of a person with any disability, epilepsy has been excluded from the list of disorders, resulting in a loss of many of the benefits that were earlier available to persons with epilepsy, causing concern to all caregivers of persons with epilepsy. Additionally, physicians/ pediatricians/ neurologists are not really aware of the benefits that are available to persons with epilepsy, especially children. To address these issues, an expert group meeting of pediatric neurologists and epileptologists in India along with social workers/epilepsy educators legal experts, parents, and teachers was held. The implication of epilepsy being dropped as a disability, was discussed, and most of the experts concurred that epilepsy should be considered as a disability, depending of the type of seizures or the epilepsy syndrome. Also, the current status of income tax benefits, child care benefits, travel concession, schooling and health insurance for children with epilepsy in India were also discussed. The importance of creating awareness on these issues was stressed on. Here authors present the group consensus statement on these legal and social aspects about the care of children with epilepsy.