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

  • Jaya Shankar Kaushik
  • Razia Adam Kadwa
  • Jitendra Kumar Sahu
  • Suvasini Sharma
  • Rekha MittalEmail author
  • Association of Child Neurology (AOCN)-Indian Epilepsy Society (IES) SOLACE Expert Group
Review Article
  • 34 Downloads

Abstract

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.

Keywords

Childhood epilepsy Civil rights Children with disability Disability evaluation 

Notes

Acknowledgements

The authors wish to thank help of Ms. Nisha Phakey in coordinating the smooth conduct of the SOLACE meeting.

Authors’ Contributions

JSK, RAK, JKS, SS, RM constituted the writing group for the manuscript. They were involved in drafting the manuscript and review of literature. All AOCN-IES SOLACE expert group members performed critical review of the manuscript for intellectual content and final approval of the version to be published. RM will act as guarantor for the paper.

Compliance with Ethical Standards

Conflict of Interest

None.

Source of Funding

The SOLACE meeting was funded by AQUILA division of INTAS Pharmaceutical Ltd. and Dr. Reddy’s Laboratories. The venue support was provided by Max Healthcare Superspeciality Hospital, Saket, New Delhi. However these funding sources had no role in the deliberations or formulation of the consensus document.

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Copyright information

© Dr. K C Chaudhuri Foundation 2019

Authors and Affiliations

  • Jaya Shankar Kaushik
    • 1
  • Razia Adam Kadwa
    • 2
  • Jitendra Kumar Sahu
    • 3
  • Suvasini Sharma
    • 4
  • Rekha Mittal
    • 5
    Email author
  • Association of Child Neurology (AOCN)-Indian Epilepsy Society (IES) SOLACE Expert Group
  1. 1.Department of PediatricsPt B D Sharma Post Graduate Institute of Medical SciencesRohtakIndia
  2. 2.Department of Pediatric NeurologyAnkura Hospital for Women and ChildrenHyderabadIndia
  3. 3.Department of Pediatrics, Advanced Pediatrics CentrePostgraduate Institute of Medical Education and ResearchChandigarhIndia
  4. 4.Department of PediatricsLady Hardinge Medical College and Kalawati Saran Children HospitalDelhiIndia
  5. 5.Department of Pediatric NeurologyMadhukar Rainbow Children’s HospitalDelhiIndia

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