A plan to get permanent disability certificates issued for Sickle-Cell Disease patients above the age of 5 years has been stuck in a quagmire between three Union Ministries for nearly three years. In a report tabled during the Monsoon Session of Parliament, a House panel urged the government to get a move on it.
The Health Ministry is responsible for determining the criteria and rules for disability certificates, while the Social Justice and Empowerment Ministry actually issues the certificates, which are required for availing reservations and other scheme benefits. Given that Sickle Cell Disease, a debilitating genetic blood disorder, is especially prevalent among tribal populations across India, the Tribal Affairs Ministry is keen to ensure that the certificates are issued to SCD patients, who suffer from chronic anemia, painful events, and complications due to associated tissue and organ damage, all caused by the destruction of the membranes of red blood cells.
The Union government has been publicising its campaign to “eradicate” SCD in India by 2047. There is little relief, however, for current patients, who are only eligible for disability certificates with a three-year validity, despite the chronic and progressive nature of their disease.
Asked about the status of permanent disability certificates, Health Minister Mansukh Mandaviya told The Hindu on Tuesday that the current focus is on “detection”. A project is currently under way to screen seven crore tribal people in 17 States and Union Territories for SCD, under the aegis of the National Health Mission and coordinated by the Tribal Affairs Ministry.
Progressive disease
Tribal Affairs Minister Arjun Munda has been personally pushing for the certificates to be issued. However, the Social Justice Ministry’s Department of Empowerment of Persons with Disabilities (DEPwD) has said that the final call on okaying permanent certificates for SCD patients is with the Health Ministry, which is expected to put out its report on the issue in a month.
When SCD was included in the list of disabilities under the Rights of Persons with Disabilities Act, 2016, patients could only avail disability certificates with a one-year validity. With complaints coming in from patients about the cumbersome procedure for renewal and experts saying that the disability only progresses among patients, the Tribal Affairs Ministry in 2020 initiated dialogue with the DEPwD about the possibility of issuing permanent disability certificates, senior government officials told The Hindu.
The DEPwD eventually increased the validity of disability certificates for SCD patients to three years, requiring a minimum of 25% disability. However, Mr. Munda once again communicated the need for permanent disability certificates for SCD patients because of the progressive nature of the disease in anyone who survives with it beyond the age of five.
Health Ministry review
Senior officials in the DEPwD have said that they had constituted a special committee to listen to the concerns of stakeholders and SCD patients about disability certificates and held consultations earlier this year. “Following this, a report has been sent to the Health Ministry, which is already reviewing the criteria and rules for disability certificates for all 21 disabilities,” DEPwD Secretary Rajesh Aggarwal said. “Once the Health Ministry’s Expert Committees are done with their report, expected in about a month, we will know if they have recommended permanent disability certificates for SCD patients,” he added.
Responding to The Hindu’s question on the progress of getting permanent disability certificates for SCD patients, the Health Minister said, “Sickle cell is a major problem in India especially in tribal areas. The focus of our Ministry is to identify and in the long term prevent SCD. This will reduce our response time and also help reduce the burden of the disease in the long run. As for adding them in the permanent disability certificate, our focus is detection currently.”
‘Lifelong illness’
In a report tabled in Parliament this August, the Parliamentary Standing Committee on Empowerment of Women, had examined issues related to the health of tribal women across India. In the report, the Committee noted that it understood SCD as a “lifelong illness” with a blood and bone marrow transplant being the only cure, “which very few people, specially amongst the tribal population can undertake”.
It thus recommended the government to find a way to issue permanent disability certificates to SCD patients who are above the age of 5 years and meet the required criteria. But it also told the government that if this is not feasible, it should at least consider increasing the validity of the temporary certificates to five years.
