Proposed method for evaluation and categorization of functional capacity of children, adolescents, and adults with cardiac diseases to bring them in existing social justice system by creating the cardiac disability criteria

摘要

Introduction Emerging epidemiological trends in India indicate the rising burden of cardiovascular diseases (CVDs) demanding a need of a social support system. Yet, the list of 21 benchmark disabilities notified by the Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment, Government of India, does not include CVDs under the newly enacted Rights of Persons with Disabilities (RPWD) Act, 2016. While the RPWD Act 2016?has acknowledged the dynamic nature of disabilities associated with congenital diseases like thalassemia, it has also provided an opportunity to bring in “cardiac disability” under its tenets. This would allow India to adopt strategies for the benefit of cardiac patients in accordance with policies adopted by developed countries such as the United States of America (USA), the United Kingdom of Great Britain (UK), and Canada. This document is to initiate a thought process of recruitment of cardiac patients in the social justice system. Aims and objectives (1) To define cardiac disability, (2) to categorize cardiac diseases/defects (groups A–C) according to severity and need for interventions, (3) to identify operated and unoperated patients with normal functional capacity and their eligibility to avail normal opportunities similar to their peer groups, (4) to create a comprehensive cardiac disability scoring (CCDS) system for disability certification based on subjective and objective evaluation of functional capacity and the corresponding heart disease category group, and (5) to create a reference literature for the issues of education, employability, insurability, and vocational counseling based on this document. Methodology The evolution of this manuscript has been discussed in view of relevant observations made by a team of cardiologists, cardiac surgeons, intensivists, pediatricians, social workers, etc. Conclusion This manuscript suggests a CCDS system to lay down criteria for disability status for eligible patients suffering from cardiovascular diseases. It intends to offer a unique scientific tool to address the psychosocial and socio-economic bias against patients with heart diseases of heterogeneous nature.