People with disabilities were not able to get regular check-ups during the pandemic because the hospitals were not accepting non-Covid cases.
Bengaluru: Prema became a patient of polio when she was a young girl. Now she walks with the help of callipers, and shoes with heels. She requires regular check-ups with her doctor to keep a check on her disability. Prema is now 44 years old and stands tall with the help of her crutches.
She works at the Rehabilitation Aids Workshop by Women with Disability (RAWWD) and makes prosthetic aids for people with disabilities. The NGO provides paramedical course to women with disabilities and trains them into making prosthetic aids for people with disabilities. Like Prema, Geeta (age 39), and Ramanjinamma (aka Rama, age 36) also work at the NGO to create the tools for helping other people with disabilities (PwD).
During the Covid-induced lockdown, these women with disabilities did not have the luxury of going to their work and make these prosthetics. They had to stay at home all the time and buying things from outside used to be very difficult for them. But the major problem they faced was while getting their regular check-ups.
As a person with a disability, regular checkups are important to stay aware that the problem does not exceed. “Regular check-ups are required for two main reasons,” said Dr Hemant Kalyan, Consultant and Head of Department, Orthopedic Surgery and Sports Medicine at Manipal Hospital, Bengaluru. “One reason is that some patients require periodic maintenance of their appliances, so they need to get these appliances regularly checked. The other reason is to prevent any chronic medical condition that a patient may develop.”
He added, “People with Disabilities sometimes have associated medical problems like cardiac or respiratory problems which need periodic review by the doctor. It is possible, that if someone who has a spinal deformity might also have associated problems with their lung capacity and therefore they need periodic review to make sure that their respiratory system is functioning properly.”
“Without regular follow-ups, or if the regular check-ups are delayed, the disabilities may turn into deformities and can cause other complications,” said Dr Ameet Kulkarni, who is a Senior Registrar at Manipal Hospital, Bengaluru.
“Small clinics were open at that time. We had to call and then used to go there. But, still, they did not let us in,” said Prema. “The doctors used to examine us outside only. We were not allowed to go into the clinic. Based on that examination, they gave us medicines.”
Buying medicines for their disabilities were not easy either. Prema had to get in touch with her doctor every time she had to buy anything. “I had to get the doctor on the phone every time I had to buy something, it started becoming very difficult to do that every time,” she said.
“The government did not give us any medicines or money. But the area MLA gave us a ration. We received vegetables and basic groceries,” said Prema.
In India, the percentage of people with disability in the population is 2.2 percent, with 2.3 percent in rural and 2.0 percent in urban areas.
As per the 76th round of an NSO Survey conducted between July and December 2018, the number of disabled men in Karnataka is higher than that of women. There is 2.6 percent of men with multiple disabilities, whereas in women it is 2.2 percent in the state.
In Karnataka, the share of men is higher in locomotor, speech and mental disabilities. In locomotor disability, there are 1.7 percent men and 1.2 percent women.
Geeta, who is also a polio patient like Prema, said, “I was not even able to get groceries during the lockdown.” Geeta lives with her parents and had to take care of herself and her parents during the pandemic.
“Every time I had to visit the doctor for my regular checkup, they used to ask me to bring a negative Covid result,” said Geeta. She was worried that her disability might increase if she skipped any of the regular checkups.
Lack of regular check-ups can cause various problems in patients. “A patient with the polio of the limb can get a flail limb (no power in the limb), they may even develop ulcers, if regular check-ups are not done,” said Dr Ameet.
“The lack of regular check-ups can lead to deformities of the foot, which might further hamper their functionality.”
“A diagnosis during the regular follow-up can help the patient in getting proper orthopaedic care or prosthetics. This can prevent the deformity from progressing and prevent any major complications,” said Dr Ameet.
Rama, with a limp in her leg, walked into the NGO every day to do her job. But during the lockdown, she couldn’t even get proper groceries. She is from Andhra Pradesh and she said that the government did provide her with some help. “The government provided us with ration and ₹1,000 per ration card,” she said.
Rama was pregnant when the lockdown had started and had given birth to her baby just a few months after the lockdown was lifted. Due to Covid-19, Rama and her baby were made to maintain social distance with the doctors and the nurses. “The doctors used to stay on the other side of the rooms than us. I used to tell the nurses and they used to communicate to the doctors,” said Rama. “For a long time, I wasn’t even allowed to touch my baby,” she said.
“I had to wait for 20 to 25 days to get my baby vaccinated,” said Rama. She was worried that her child will not be able to get the vaccination that children are supposed to get after birth.
“The entire world was having problems, but the People with Disabilities were facing the harsher side of it,” said Rama.
Ms Indra Moses, who is the Manager of RAWWD said, “We tried to provide salaries to everyone during the lockdown so that no one suffers any kind of distress.” The NGO provided the guidelines given by the WHO to its members.
Like everyone else in the world, Prema, Geeta, and Rama were following all the Covid-19 guidelines and protocols. But they were not aware of the guidelines specifically made for people with disabilities.
The Department of Empowerment of Persons with Disabilities has provided various guidelines to bring more ease for the PwD during the covid-induced lockdown. These guidelines helped bring access to people.
The guidelines say that the documents and safety protocols should be available in Braille, with audio and video format with subtitles. It also gives measures for access to helping aids for people with disability. Also, considering the lower immunity in PwD, the guidelines give ways in which they should be provided with care considering the social distancing protocols.
The World Health Organization has given disability considerations during the Covid-19 outbreak. The guidelines were given so that PwD could easily access water, health-care services, and sanitation services, etc., during the pandemic.
“The people with disabilities are more susceptible to infections as they can’t maintain their hygiene themselves,” said Dr Ameet. So they require help from caregivers. This vulnerability to catching an infection is also the reason why many people preferred to stay at home rather than going for their regular check-ups.
The guidelines say that the washbasins should be available at a level that they are reachable for a person in a wheelchair. The guidelines also take into consideration that a PwD might have other chronic diseases that could increase the chances of Covid infections.
As per the NSO Survey, among persons with disabilities, 62.1 percent have a caregiver, for 0.3 percent of the persons with disabilities caregiver is required but not available and for another 37.7 percent of the persons with disabilities, no caregiver is required.
“The people with disabilities, most of the time, require another person or caregiver to be with them to help them move,” said Dr Ameet. “Due to the social distancing protocols, to avoid personal contact with others, these people were rendered helpless. This is one of the reasons why many patients were not able to come for regular check-ups.”
Chitkala Sharma’s brother is a Down’s syndrome patient. Chitkala is a student and from January to March she had to go to her college since the lockdown was lifted and the physical classes had started. “I had to go out, but I always took care that when I come back home I go through all the precautions,” Chitkala said. Even though she had to go out, she was always worried that this could be dangerous for her brother with his susceptibility to hyperthyroidism.
The people or caregivers of PwD should avoid crowded places and should follow the appropriate measures. The equipment used by PwD like wheelchairs, walking canes, etc., should be regularly disinfected and sanitized.
The governments are supposed to bring videos with sign language and proper captions. Any document that is in the public domain should be available in Word format so that it can easily be translated in Braille format.
The United Nations provides a detailed list of things required for the safety of PwD. In low-income countries, the availability of healthcare can be tricky for a PwD with long-term diseases.
Most patients who have any physical disability, do not need any increased dosage of medications after the long gap between their check-ups. But, in the case of people with any mental disability, this does not stand true.
“In case of patients with Cerebral Palsy (CP), they require a certain muscle relaxant dosage to keep their muscles in a relaxed state,” said Dr Ameet. “These patients require regular check-ups to keep the dosage in check. The state of many such patients may get hampered due to late check-ups. In the case of patients with physical disabilities, their disability can be easily managed through orthopaedics and prosthetics and very few medications are needed to help them.”
During the pandemic to reduce the problems of regular check-ups, many doctors tried to reach their patients through video consultations so that their patients don’t miss anything.
“Medications could be easily prescribed through video consultation,” said Dr Hemant. The technology helped in reaching patients when they could not visit the hospitals.