Clear Guidelines For Thalassemia Patients under Rights of Person With Disability Bill,2016
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The Rights of Persons With Disability Bill,2016 which was passed in the Lok Sabha in December,2016 and formally Notified in The official Gazette of India in February,2017 lacks a lot of clarifications from the Government which are yet to be notified.
The recently passed Bill which now includes 21 Disabilities to be specific including Thalassaemia and Sickle Cell Disease which is a great step forward as India is regarded as The Capital of Thalassaemia with more than 40 Million Carriers (Minors) and more thanÂ 100,000 Thalassaemia Major Patients over the country. But the implementation of this Bill is now Questionable as Government has Given the same Rights to Thalassaemia Patients as were available before to other Disable Patients with more than 40% of Disability but the Government fails to have a clear notification on this matter, as the Disability of Â Thalassaemia Patient cannot be measured in Percentages and hence Â Government Doctor and/or Chief Medical Officer (CMO) of respective states are only denying a Disability Certificate for Thalassaemia Patients as the same is required to secure a seat under the PwD Category in any of the Higher Education Colleges/institutions like theÂ Delhi University.
As per a Personal Experience the Delhi University requires according to old guidelines a Certificate of Disability with minimum 3 years of validity certifying the Kind of disability and also mentioning that the said Person is more than 40% Disable which may be the case with Thalassaemia Patients but the same cannot be measured and hence the Doctors are right in their decision of not mentioning the Percentage (%) of Disability on the Certificate Â but the same without Percentage(%) is not acceptable in Institutions/Colleges like Delhi University.
For this Purpose, the Government of India should immediately issue a notification with immediate effect clarifying the same and exempting Thalassaemia Patients from the Percentage(%) of Disability criteria failing to which a full year may go wasted for Thalassaemia Patients and other new Categories added in this Bill for the first time may also suffer with same/similar problem(s).
These all confusions and problems are only happening because of lack of clarification from The Government of India while making this Bill and further because of communication problem between Government & Universities & Government Hospitals/CMO of states.
Also, Government should readily accept feedback regarding its new Bill and solve issues pertaining to the same on an immediate basis as there is no compensation for drop year and inconvenience to Persons with Disabilities. As a Thalassaemia Major Patient everyone are helpless now because of lack of clear Notification from the Government our Future tends to suffer, but as a community we are united and maybe as a whole community we can reach the Government and can demand our Rights to Equal Opportunity. Share this Post to reach Maximum Patients.
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