As we already know what Thalassemia patients go through, it was very important to give rights and benefits to them in order to support these patients. After years of activism, a law was passed where Thalassemia was included under the person with disability act.
Now as you already know, Thalassemia is a lifelong disease and one where constant care and monitoring is required. Also, the life expectancy of these patients in India is also not very long. Hence, it was essential to provide benefits to the patients and families so that their lives can become a bit easier.
However, this was difficult as there was no national policy on Thalassemia and very few benefits were available as per the Government.
Therefore, people started to fight as it was high time that a national policy on Thalassemia was put in place. : Namitha A. Kumar, a PhD holder from a reputed research institute in India, along with Vijay Chandru from the Centre for Health Ecologies and Technology was instrumental in framing the first ever drafting policy in India for rare diseases with the help from the centre for human genetics. The policy was submitted to the Karnataka Government in March 2016.
Dr.Vinky Rughwani, member of State Blood Transfusion Council says that, “We have been following up on the issue for the last 6 years. In 2014, Congress had placed the bill in Rajya Sabha and it was pending”.
Shobha Tuli, president of the Federation of Indian Thalassemics, says the need of the hour is to have a national policy on thalassaemia. “This will help in not just creating awareness about the disease but also ensure treatment for all and strategies to prevent its spread,” she says.
Finally after 6 years of struggle, in December 2016, Thalassemia patients were expected to enjoy benefits from the government. Dr.Rughwani said,”When BJP came to power, we met social justice and empowerment minister Thawar Chand Gehlot to stress upon their demand. The bill was finally passed by the Rajya sabha” He also includes,” There are about a lakh of thalassemia patients, it’s a big victory for all these patients because despite their health condition, they were deprived of all government provisions given to other people”.
Now let’s look at the benefits that Thalassemia patients will get under this new law.
- Right to equality – Equal opportunity would be provided to PWD in all fields and selection would be done only based on merit.
- Life with dignity and respect for Integrity. – Thalassemia patients and other PWD can lead a life of dignity as there would be no discrimination in matters of education, jobs or any other field. Their integrity would be respected in the same manner as for the general public.
- Children are not to be separated from parents except on the order of a competent court, and information about reproductive rights and family planning to the person with disability is to be ensured. All public documents should be made available in accessible formats.
- It is also provided that a person with benchmark disability who considers himself to be in need of high support may apply to the authority appointed by the Government for the same and the authority shall take steps to provide support accordingly (Sec 38).
- The Bill also provides for the access to inclusive education, vocational training, and self-employment of disabled persons without discrimination. All facilities including buildings, campuses, and various facilities are to be made accessible to the person with disability and their special needs are to be addressed.
- Appropriate healthcare measures, insurance schemes, and rehabilitation programs for the PWD are also to be undertaken by the Government.
- Cultural life, recreation, and sporting activities are also to be taken care of and there should be no discrimination with PWD.
- All Government institutions of higher education and those getting aid from the Government are required to reserve at least 5% of seats for persons with benchmark disabilities.
- Incentives to employer in private sector are to be given who provide 5% reservation for persons with benchmark disability.
- Atrocities on person with disability have been made punishable with imprisonment of 6 months extendable to 5 years and with fine.
Government has also provided benefits to the person with disability with a unique disability ID card. Person dealing with thalassemia or his or her guardian can fill a form and submit it to the Department of empowerment of person with disabilities, Ministry of social justice and empowerment, Government of India through the link below. The form needs
- Personal details
- Address details
- Disability details
- Employment details
- Identity details.
The form can be filled and submitted through the below link.
The card shall bring a host of benefits to the Persons with Disabilities as given below:
- Persons with disabilities will not need to make multiple copies of documents, maintain, and carry multiple documents as the card will capture all the necessary details which can be decoded with the help of a reader
- The card will be the single document of identification, verification of the disabled for availing various benefits in future.
- The Card will also help in stream-lining the tracking of the physical and financial progress of beneficiary at all levels of hierarchy of implementation – from village level, block level, District level , State level and National level.
Some additional points to be noted:
- Persons with Disabilities have already started applying online for Disability Certificate from all States/UTs.
- Enrolment /Application Registration number will be generated for all the applications submitted successfully.
- SMS confirmation will be sent to the applicant with the enrolment/application registration number
- Applicants who do not have Disability Certificate will receive SMS with date and time to visit the nearest CMO office for assessment
- The Disability Certificate will be generated online after assessment and verification
- SMS confirmation will be sent to the applicant with the allocation of UDID number
- The status of the application can be checked online by enrolment/application registration number
- Printed UDID Card will be sent to the PWDs on their Postal Address as and when printed (Process of printing the card is yet to start; will be intimated on the website).
Inclusion of Thalassemia under the Persons with Disability Act has been a milestone and a big achievement for all the people who have worked towards it. We would like to thank all such people and hope that more of such developments take place so that existing Thalassemia patients get benefits which would help them lead a better life. Also, these kind of milestones are important as more and more people will come to know about Thalassemia and hence try to prevent themselves from getting affected by it.