Department of Pediatrics, Pt B D Sharma Post Graduate Institute of Medical Sciences, Rohtak, Haryana, India.
Department of Pediatric Neurology, Ankura Hospital for Women and Children, Hyderabad, Telengana, India.
Indian J Pediatr. 2019 Jul;86(7):599-607. doi: 10.1007/s12098-019-02927-2. Epub 2019 Apr 3.
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.
癫痫是一种慢性神经系统疾病,不仅影响患者的健康,还会对整个家庭的经济、心理和情感产生影响。在从《残疾人(1995 年)法案》向《残疾人权利法案》(2016 年)的转变中,涵盖了残疾人生活的各个方面,但癫痫并未被列入疾病清单,导致许多以前为癫痫患者提供的福利丧失,这引起了所有癫痫患者护理者的关注。此外,医生/儿科医生/神经科医生对癫痫患者可获得的福利并不了解,尤其是儿童。为了解决这些问题,印度的儿科神经病学家和癫痫学家专家组与社会工作者/癫痫教育工作者、法律专家、家长和教师举行了会议。会议讨论了癫痫不再被视为残疾的影响,大多数专家一致认为,应根据发作类型或癫痫综合征将癫痫视为残疾。此外,还讨论了印度癫痫儿童的所得税优惠、儿童保育福利、旅行优惠、教育和医疗保险的现状。会上强调了提高对这些问题的认识的重要性。作者在此提出了关于癫痫儿童护理的这些法律和社会方面的小组共识声明。