Hurdles persist for persons with rare diseases seeking disability certification

In June, when Mallela Venkateswara Rao, a lab technician in Vijayawada, headed to the Sachivalayam in his area, he hoped that his son, Mallela Gunasekhar, aged 15, who was diagnosed with Becker Muscular Dystrophy (BMD) in 2018, would finally be eligible for a pension that is due to him.

But his hopes were dashed once again, when he found that his now bed-ridden son, has been given a disability percentage of 75%. BMD is a rare genetic disorder and a progressive disease, which causes muscle weakness. Over a period of time, people living with the disease lose the ability to walk, and become bed-bound.

Under the NTR Pension Bharosa, the A.P. government disburses a pension amount of anywhere between ₹6,000 and ₹15,000 for people with more than 40% disabilities. Those who are fully disabled are eligible to get ₹10,000 or more in A.P. But people with multiple rare diseases have pointed out that despite being bed-ridden, many do not get this amount.

In 2021, when Gunasekhar’s family applied for the ‘Certificate for Persons with Disability’, he was assessed and given a disability percentage of 75%. Based on the percentage, Gunasekhar receives ₹6,000 every month.

Now, after five years, when Gunasekhar has become bed-bound, he continues to receive the same amount decided based on his condition in 2021. Mr. Venkateswara submitted a rollback form in December, 2025, seeking an update in the percentage given to his son. In June, when he received the certificate, he found that his son has been given a disability percentage of 75% once again.

“The government should understand that every time there is a delay, we are losing out on money that is rightfully owed to my son,” says Mr. Venkateswara, who is also the co-ordinator of Amaravati Rare Diseases Organisation.

Similar is the story of E. Varalakshmi, of Kalugotla village in Yemmiganur mandal of Kurnool district, a farm labourer and illiterate she has been running from pillar to post for the past four years to obtain a disability certificate for her 28-year-old daughter Ediga Usenamma, who was diagnosed with Juvenile Huntington’s disease in 2018.

Varalakshmi, lost her husband and son to the same rare disease, which is hereditary, progressive and neurodegenerative causing severe involuntary movements, motor dysfunction, cognitive, and behavioural symptoms.

Varalakshmi, was told that her applications for her daughter could not go through because of ‘payment failure’. Finally, this year, the Sachivalaym staff in Yemmiganur successfully booked a slot for assessment of her daughter through the Software for Assessment of Disabled for Access, Rehabilitation and Empowerment (SADAREM).

Her daughter was assesed on May 12, but Varalakshmi continues to wait for a word on the certificate. Apart from the widow pension of ₹4,000 that she receives, Varalakshmi does not have any financial backing. The delay is only increasing her anxieties by the day, especially after her daughter suffered a fall last week.

“My son and husband passed away after suffering a head injury due to a fall,” recalls Varalakshmi, now fearing the worst in her daughter’s case.

Lack of awareness among the disability certifying staff about rare diseases is one of the reasons for such hassles, explains Prasanna Shirol, co-founder of Organisation for Rare Diseases. The Rights of Persons with Disabilities (RPWD) Act, 2016, recognises 21 disabilities in the country, including blindness, locomotor disability, hearing impairment, among others.

“When a patient of a rare disease, example, Huntington’s Disease, goes for medical assessment, the certifying staff is not aware that it is a progressive disease. Since the name does not feature in the list of 21 disabilities, they cannot assess the patient’s disability properly,” he explains.

Recently, the A.P. government has begun focussing on problems faced by people of rare diseases. When asked about the measures being taken, Director of Medical Education A. Vishnu Vardhan said the government will launch the Sanjeevani initiative across the State to address issues faced by people living with rare diseases. The government is also looking at the Kerala model to address the issues. He said that he would look into Varalakshmi’s case.