Thalassemics set to challenge government guidelines on disability certification

The thalassemia community was happy when the blood disorder was finally recognised as a disability in 2016. Now a recent notification that has given guidelines for certification has left them unhappy.

Guidelines do not recognise use of percentage benchmark for blood disorders

The guidelines say that a disability certificate can be given only on the basis of linked conditions in the patients. This is the number of blood transfusions, signs of bone marrow hyperplasia, and osteoporosis. It does not recognise the use of percentage benchmark for blood disorders like thalassemia.

A thalassemia major person who is dependent on blood transfusions for life is 100% disabled as it is a progressive, genetic disorder. This is unlike a blind person, who can be certified as 50% visually disabled if one eye has an issue.

The Rights of People with Disabilities (RPD) Bill passed by Parliament in December 2016 looks at disability as a evolving concept and increased the number of disabilities from 7 to 21, including thalassemia.

The Ministry of Social Justice and Empowerment recently issued guidelines for certification through a gazette notification on 5 January. The community is upset as thalassemia has been considered along the same lines as motor disability or visual or hearing impairment, where percentage comes in. They plan to challenge the government for a modification.

The Federation of Indian Thalassemics will soon write to the Ministries of Social Justice and Disabilities asking for a modification. They say that none of the thalassemia societies in India was consulted before the guidelines were framed, which is unfair.

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