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An India family, consisting of a parents, grandmother, and a 21-year-old man with special needs standing together.
"Being caregivers of kids with special needs, we struggle with everything." Photo courtesy: Veena Naren

Special Needs

Indian Adults With Disabilities Are Still Waiting for Clarity From the Government on COVID-19 Vaccines

'We don’t know how he’ll handle going to a hospital alone, being isolated.'

One of the highlights of 33-year-old Shaurya Mehrotra’s week would be cycling and going to his pottery studio in Gurgaon, India. When COVID-19 hit, his active lifestyle was upended.

“Shaurya’s routine has been in shambles,” 60-year-old Nina Mehrotra, his mother, told Re:Set. “He cries without reason and doesn’t know how to express his emotions as he cannot verbalize.”

Being an adult with Down syndrome, Shaurya has a weak immune system, and research has found that mortality due to COVID-19 is higher in people with Down syndrome when compared to the average person. Adults with Down syndrome are three times more likely to die of COVID-19 when compared to the general population. While another one pegged the risk at 10 times more than the normal population.

A year after the first lockdown and months after India has started vaccinating its population, Shaurya is still waiting for his turn to get the vaccine.

Policy changes

The Indian government, Mehrotra said, should’ve included people with disabilities in the first vaccine drive as they need that extra layer of protection. “And not only kids, the parents and the caregivers also need them for their physical and mental health to take care of the dependents. Countries like the U.S. and UK did it during the first round.”

Ahead of the second round of vaccinations at the beginning of this month, the Indian government expanded the eligibility criteria and added, “persons with disabilities due to intellectual disabilities/ muscular dystrophy/ acid attack with involvement of respiratory system/ persons with disabilities having high support needs/ multiple disabilities including deaf-blindness,” among COVID-19 vaccine beneficiaries. 

However, several disability rights groups and activists have said that this list is still not enough. They are asking for the removal of the age limit for the vaccine for people with disabilities, the addition of categories of disabilities, and vaccines for up to two caregivers of those with severe disabilities.

“Every morning I get up and see the numbers and we get very scared.

Re:Set reached out to the Ministry of Health and Family Welfare for clarification on whether adults with intellectual disabilities can only get vaccinated if they also have other comorbidities. Their spokespersons haven’t responded at the time of publishing this article.

“They [Indian government] make a lot of noise about Divyang,” Mehrotra told Re:Set. Indian Prime Minister Narendra Modi coined this term which means divine for people with disabilities in a bid to do away with the stigma in the country. “They have to take this responsibility, give some assurances to caregivers,” she said. “We have to take a chance as especially in the UK and U.S. people with special needs kids have been given the vaccine.”

“Every morning I get up and see the numbers and we get very scared,” Mehrotra said. India is breaking its own COVID-19 infection records everyday. “It adds to the pressure of having a dependent. I felt so helpless.”

Lack of research

Mehrotra is waiting for the government to lift the age bar — currently the lower limit for vaccination in India is 45 — so Shaurya can get vaccinated, just like her and her husband. She also plans to consult a doctor before Shaurya gets the vaccine to know of any pitfalls or side effects due to lack of research on its impact on people with disabilities.

Covishield, developed by the University of Oxford in partnership with AstraZeneca and produced at the Serum Institute of India, is one of the three available vaccines in India. It’s sold as AstraZeneca worldwide, and has been in the spotlight because of reports of people developing blood clots and some dying as a result. It’s rollout has been halted in some countries including Denmark while other countries like Canada have said it won’t administer it to people under the age of 55.

There is research already produced and more underway about the side effects of COVID-19 vaccines on neurotypical people. While there is the aforementioned research on the severity of COVID-19 on those diagnosed with Down syndrome, but there isn’t enough available for the vaccine’s side effects on those with the condition. Some younger people who have received the vaccine have reported of arm pain, swelling, fever, and tiredness, but this report by five non-profits from the United States does not state any others, while encouraging people with Down syndrome who have been vaccinated to register their side effects with the Food and Drug Administration (FDA).

Limited options

Image of a 21-year-old Indian man with special needs standing over a bicycle while wearing headphones.

Varun lives with Fragile X syndrome and his mother is eager to get him vaccinated at the earliest.

A self-proclaimed “believer,” Mumbai resident Veena Naren is taking an optimistic view on the vaccines and for her family.

“The government won’t give millions of doses without some of their brain cells,” Naren told Re:Set when asked about the lack of research into the side effects of the vaccines for people with special needs. “Someone can pass away walking on the road, so I’m not thinking too much about the potential negative effects of the vaccines.”

49-year-old Naren has battled with high blood pressure for 15 years. Her husband had a stroke at a young age, and has been diagnosed with diabetes and hypertension. Their son, 21-year-old Varun, was diagnosed with Fragile X syndrome, a genetic disorder.

“He has to get vaccinated. But also we can’t get infected as who would take care of him with all our comorbidities.”

“Our main concern from the beginning of lockdown,” Naren explained, “was that Varun shouldn’t catch it [COVID-19]. We don’t know how he’ll handle going to a hospital alone, being isolated, other people not understanding him and him not understanding them. There was a fear that they would isolate everybody.”

Naren and her husband got vaccinated with Covishield recently, and while they were at the vaccination centre, she asked when  her son could get one. The doctor told her that they might have to do a special drive, as people with special needs might not wait in queues for long periods of time.

“He has to get vaccinated,” she said, “But also we can’t get infected as who would take care of him with all our comorbidities?”

This pressure, along with a belief in karma is driving Naren to get her son vaccinated, despite lack of clear direction by concerned authorities, or even future implications.

“The vaccine is just another thing now. Being caregivers of kids with special needs, we struggle with everything. We have a list, from getting a job for a kid or people even understanding disability.”


Also read: Fake News, Unsolicited Advice: What I Went Through When My Father Was Diagnosed With Severe COVID


 

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Indian Adults With Disabilities Are Still Waiting for Clarity From the Government on COVID-19 Vaccines