Deogarh, Puri, Ranchi (Odisha and Jharkhand): It was sometime in the 1980s, more than a quarter century before India declared that it had eradicated leprosy, that a government doctor told Usha Behra she had leprosy.
A slow-growing bacterium called Mycobacterium leprae attacked her peripheral nerves and left her limbs shortened, unable to obey commands from her brain.
Leprosy caused what is called locomotor disability, taking away her ability to walk without assistance. Today, the frail, greying Behra, 70, can only walk with the use of a crooked wooden walking stick and special sandals, about four inches long to fit her shortened feet.
Ever since 2001, when she found out about the Jibramji leprosy colony, Behra has lived here among others like her. She has a husband who abandoned her and a son who is no longer in touch. Her village asked her to leave when they heard she had leprosy.
Walking even a few metres is a difficult task for Behra. When the Covid-19 pandemic struck India, it did not make much difference to her life, which remained as limited as it was before.
In August 2022, 19 months after India’s vaccination programme began in January the previous year, workers from a nonprofit visited the colony identified those with disabilities and liaise with government health workers, who gave Behra her first vaccination.
Months before she got her first dose, Behra had heard about Covid-19 and that she could get the vaccine at a local government hospital, no more than 4 km away. For Behra, it might well have been another country.
“I knew about the vaccination drive before then but I cannot walk far,” she said. “So I did not go.”
The trip would have cost her at least Rs 600, more than the Rs 500 disability pension that she receives every month from the Odisha government. It is her only income.
“After spending Rs 100-200 on food, I only have Rs 300 left for my other expenses,” Behra said, “I cannot afford to travel to the hospital.”
A missionary-run leprosy care centre at the entry of the colony provides routine care and leprosy-related treatment to Behra and other residents of the colony. But for all other illnesses, Behra relies on over-the-counter medications that she buys from a nearby medical shop.
Despite the increased risk of contracting Covid-19, in particular at a time when the disease is spreading across India again, many persons with disabilities, such as Behra, had to wait months to be able to be vaccinated due to physical and informational barriers and fear, stigma and discrimination.
The sole vaccine dose that Behra did receive was possible because of a vaccination drive organised for the residents at the colony, part of a programme run by the Shanta Memorial Rehabilitation Center (SMRC), a voluntary organisation that has been working in the field of disability for 20 years.
The project is supported by the ministry of health and family welfare (MoHFW) and the United States Agency for International Development (USAID) and has been implemented in some districts of Odisha, Maharashtra, Jharkhand and Chhattisgarh.
Over the last month, there has been a surge of Covid-19 cases in India. As per an April 20 update from the health ministry, 12,591 cases were reported in 24 hours to the update. This was the highest daily tally in around 8 months. Over the last week, 73,874 new cases were reported and 215 people have died due to Covid-19. This is 20% more new cases and 44% more deaths than that reported the preceding week.
Over the last five days, over 10,000 new cases have been reported every day and 35 people have died every day on average. Some experts said the disease may have become endemic, meaning something people will have to live with, such as the common flu, but Covid requires some special precautions, such as isolation, because of its infectious nature.
Meanwhile, as of April 23, 2.2 billion Covid-19 vaccine doses have been administered to 1.1 billion registered citizens. In January 2023, the government said that 97% of eligible beneficiaries have received at least 1 dose and 90% have received both the doses of the vaccine. Demand for the vaccine has now fallen, but it is clear from our reporting that some never got it, as they were supposed to.
Despite increased barriers and challenges in accessing vaccines, there is no data on the uptake of Covid-19 vaccination among persons with disabilities. In a response to a right to information (RTI) request, MoHFW told Article 14 that “Information as sought [on persons with disabilities who have got Covid-19 vaccination] is not readily available and maintained and that providing such information would amount to creation of data from the backend that would be disproportionately diverting the resources of public authority.”
The response also said that providing such information “does not serve any larger public interest”.
In the end of February 2022, Article 14 met almost 25 persons with disabilities from tribal and rural areas in Northern Odisha’s Deogarh district and Central Jharkhand’s Ranchi district and from the city of Puri in Eastern Odisha and we found that the barriers to access Covid-19 vaccines is a subset of the larger issue of healthcare barriers that persons with disabilities face.
For most people that we interviewed, lack of accessible public transport has made reaching a healthcare facility a costly affair, many times costing more than their incomes. This is pushing people to rely on medical shops and quacks, which is also fuelled by misinformation and lack of awareness.
The 2016 Rights to Persons With Disabilities (RPWD) Act recognises accessible and affordable healthcare as a right of persons with disabilities but India still does not have a dedicated healthcare policy for disabled people, Disability rights activists told Article 14 that such a dedicated policy would be integral in bridging access gaps that persons with disabilities face.
For Many, Reaching Healthcare Is Unaffordable
It was a normal day for Niranjan Hantaga, a medium-built 30-year-old who is unemployed. He was cycling with his brother to their school in Chappabahal village in the Northern Odisha district of Deogarh, when suddenly, a debilitating pain in his legs made it impossible for him to continue.
Later, Hantaga went to the district hospital in Deogarh, 60 kilometres away and there he was told to do some blood tests. “The tests did not show anything amiss,” said Hantaga in broken Hindi, “So, the doctor said there was no problem and we returned home.”
That was the last time Hantaga visited a hospital for treatment for his pain and the pain worsened over 16 years and he now has partial paralysis in both his legs.
Hantaga now spends all his day on a cot in a hut made with wooden planks, with a pet parrot for company. He lives with his mother, who is the only earning member in the family.
The nearest healthcare centre from Hantaga’s village is the community healthcare centre in Barkote, 30 km away. To make this journey, he would need to hire a private car and seek help from his neighbours to get into the car.
“My mother does agricultural work and sometimes we sell honey or some forest produce to make ends meet,” said Hantaga, who explained he could not afford to travel to the hospital.
Around 30 km away, in Raital village of Deogarh district, 75-year-old Chudamani Pradhan also reported similar barriers. Pradhan, who has been deaf since birth, has been behaving “unusually” for the past seven to eight months, his wife Sushma Pradhan said.
“He has not been able to sleep well and has bouts of screaming and yelling,” said Sushma, “He also runs away from the house and sometimes wanders into the jungle.”
Sushma is concerned about Pradhan’s mental health and wants to take him to Burla in Sambalpur district to see a psychiatrist. But they don’t have the money to make that 100 km journey and spend on medicines, said Sushma.
“My son is the only earning member of the family,” she said, “And we live off of the food that he grows on the small patch of land we have.”
There must be one primary health centre (PHC) for 20,000 people in hilly and tribal areas, according to the 2012 Indian Public Health Standards (IPHS).
These centres are supposed to provide 24x7 emergency services and do early detection and treatment of mental illnesses. As of March 2022, there were only 445 PHCs in Odisha’s tribal areas against the required 481, a shortfall of 7.5%.
A quarter of the posts for doctors in these PHCs are vacant, pushing people to go to distant community health centres and district hospitals to access basic healthcare.
In addition to the distance, lack of wheelchairs and other mobility aids also make accessing healthcare facilities difficult for persons with disabilities.
When 14-year-old Binay Kumar was born, he did not cry. “He was born at 5 pm,” said Mina Devi, his mother, “But he cried only at 11 pm.”
The complications during his birth resulted in development of cerebral palsy, a group of disorders that affect a person’s ability to move and maintain balance and posture.
When Article 14 went to meet Binay with his mother, he was locked inside a dark room in his home in Medetungri village in Jharkhand’s Ranchi district.
With no wheelchair, Binay moves by dragging himself while on his stomach. “I have to lock him whenever I go out,” said Mina, “Because I am scared he will go out and hit his head somewhere.”
Mina is the sole earner of the family and finds work under the Mahatma Gandhi National Rural Employment Guarantee Scheme (MGNREGS), a central government scheme providing a minimum of 100 days of employment in a financial year. In Odisha, workers earn around Rs 222 per day under MGNREGS. Till Binay was four, Mina routinely took him to Ranchi city, around 30 km away to consult doctors.
To reach Ranchi, she would have to carry Binay on her back for around a km till the main road and take a rickshaw but she cannot do that anymore.
“Earlier, I could carry him around on my back,” said Mina, “But now, he is heavier and I feel like my chest will burst if I carry him.”
In 2020, Binay’s father drowned while bathing in a nearby pond, leaving Mina to take care of Binay, her infant daughter and disabled mother-in-law.
“I want to take Binay to doctors but we don’t have the means,” said Mina, “I barely manage to feed everyone, how can I afford to take him to the hospital.”
Cerebral palsy has no cure but physiotherapy is one of the most important forms of treatment to strengthen the muscles.
District Disability Rehabilitation Centres (DDRC), established since 1999-2000 to provide rehabilitative support for disabled people, are meant to provide therapeutic services, assist disabled people with assistive devices, disability certificates and counselling.
Only 55-60 of 269 such centres set up were functional, said a Parliamentary Standing Committee report released in December 2022. The committee criticised the government for delayed implementation and called the government “somewhat casual to complete the task in hand”.
Misinformation & Reliance On Quacks
The lack of access to affordable and accessible healthcare is pushing persons with disabilities and their caretakers to rely on quacks and over the counter medications from nearby medical shops.
Montu Munda was eight when, one day, a sharp pain in his hips stopped him from walking. His father, a mason from Deogarh district’s Paraposi village, took him to the community healthcare centre in Tileibani, 25 km away. The doctor there told him that Montu would have to be operated on when he turned 12.
Montu, now 13, has not had the surgery and the only “medicine” he gets is a light brown powder that his mother gets from a quack in Kusumi, 77 kilometres away.
“I go there because he is popular and he does not demand any payment,” said Jamuna, Mountu’s mother, “I give him Rs 30 or Rs 50, based on how much I can afford.”
Jamuna makes this 77 km journey either in a shared tempo or as a pillion on someone’s bike once or twice every month.
“Maybe he will get better if we go to a hospital. But what can I do? I don’t have the money,” said Jamuna, “Since my husband’s death last year, we are struggling to make ends meet. But I still go and get this medicine because I have to do something and cannot see him suffer.”
Besides affordability, a complex web of misinformation, lack of awareness and convenience is pushing people to choose quacks over public healthcare. Anukulia Gochhiyat, lives barely 2 km from a community health centre in Tileibani in Deogarh district.
But over the last seven years, a weakness below his waist had made it difficult for him to walk. He has not visited the centre for any treatment. Instead, he has travelled as far as 100 km to seek treatment from quacks and ayurvedic practitioners.
“People say this will get me better, so I go,” said 75-year-old Gocchiyat. “Also, they send the medicines to my home so that I don’t have to go again and again.”
Hantaga from Chappabahal has also visited multiple quacks over the last 16 years. “Family members and neighbours keep suggesting different people saying they will fix me,” said Hantaga, “So, with hope, I have spent what little money we could save.”
But none of these “treatments” have helped Hantaga or his pain and he said he would not go again to these quacks.
Health-related misinformation and lack of awareness has also acted as barriers for accessing Covid-19 vaccination for persons with disabilities.
Everyone in Dasarath Munda’s household has got both the doses of Covid-19 vaccine, except 17-year-old Dasarath. Munda was 11 years old when he fell off a tree near his home in Medetungri in the Central Jharkhand district of Ranchi. Since then, both his legs have been paralysed and he is now using crutches made out of bamboo to move around.
Since September 2022, staff from the SMRC have been trying to speak to Dasarath’s family and allay their fears, but it has not worked.
“He is taking hard (sic) medicines,” said Sila Devi, Dasarath’s mother, “So we did not give him vaccine as it might react with the medicines.”
Dasarath has been taking medicines that were given to him by a “doctor” that visits the village. Article 14 found the “hard medicine” was a nutraceutical product made of various herbs.
Sila Devi also worries that the vaccine will worsen Dasarath’s disability. “The vaccine made me extremely sick for 2 days,” said Sila Devi, “What if he falls sick and his health worsens?”
Like Dasarath, thousands of persons with disabilities in Odisha and Jharkhand are unvaccinated or partially vaccinated. As per data shared with Article 14 by SMRC, around 5,000 persons with disabilities in Odisha’s Puri and Deogarh districts and around 2,000 in Jharkhand’s Ranchi and Hazaribagh districts are yet to receive Covid-19 vaccination.
These data, shared on February 24, includes those who were never vaccinated, those who have got one dose and those who had both shots.
Note: Data on persons yet to be vaccinated includes people who are unvaccinated, partially vaccinated and those who have not got the precaution dose.
The data that SMRC shared was collated to implement the vaccination programme and one of the main challenges that the team faced was the lack of data on persons with disabilities. “There is no proper record of persons with disabilities. So we did not get any secondary data,” said Ram Lakhan, district coordinator of the programme in Ranchi, “So we had to collect primary data and do a survey in all of the villages.”
In each of the districts, the teams spent around a month for the survey. In Ranchi, as they are implementing the programme, they are coming across people who were left out during the survey, said Lakhan.
The RPWD act states that governments and local authorities have to undertake surveys, investigations and research on persons with disabilities and cause of disabilities to promote access to healthcare and prevent occurrence of disabilities.
It also says that governments and authorities must provide healthcare during times of natural disasters and other situations of risk.
Despite the increased risk that persons with disabilities faced during the pandemic, India did not prioritise disabled people when it rolled out its vaccination drive in January 2021.
It took eight months and a Supreme Court directive in September 2021 for the union government to announce the Har Ghar Dastak (Knock On Every Door) campaign that allowed home vaccinations. Meanwhile, in September 2021, Jharkhand had announced its ‘Vaccine Express’ campaign to reach people living in inaccessible areas and those who have been left out.
But neither of these programmes specifically targeted persons with disabilities like the SMRC programme which began in Odisha in March 2022 and in Jharkhand in September 2022.
“Some of the main barriers that we found was that families believed vaccines would worsen the disability,” said Asha Hans, executive vice president of SMRC, “And some also believed that there was no point to it. They would say, ‘they are already disabled, why give them something that would save their lives. It doesn’t matter’.”
This perception was also shared by the community and some of the medical professionals, added Hans.
“This project was also a good opportunity for us to know what the status of disabled people is in the country, especially in rural and tribal areas,” said Hans, “There was a lack of assistive devices, which the government is supposed to provide free of cost, but people did not even know where to go and how to get them and people did not have disability IDs. These places were still 50 years behind.”
Wanted: An Inclusive Health Policy
Persons with disabilities face many barriers in accessing healthcare as individuals, within families and society.
These include but are not limited to physical barriers, bias or discrimination within households, lack of information, poverty and lack of awareness and training amidst healthcare professionals on disability issues.
These issues are compounded in rural and remote areas due to general lack of infrastructure and services, said Balakrishna Venkatesh, honourary convener of the Indian Disability Forum (IDF), a forum of national and regional organisations advocating for disability inclusive policies and the Indian Forum for Rehabilitation and Assistive Technology (IFRA), an informal network of persons with disabilities and organisations of persons with disabilities.
To bridge these gaps, there is a need for a specific policy focusing on access to healthcare for persons with disabilities, said Smitha Sadasivan, a disability rights activist and a member of the Disability Rights Alliance, a coalition of independent disability rights organisations.
“The Rights for Persons with Disabilities Act has many provisions about accessible health care but they have not yet been implemented,” said Sadasivan.
To bridge the healthcare access gap, a health intervention that emerged from the 1978 Alma Ata declaration signed by 134 countries including India in the then Soviet Union could be helpful, said Venkatesh.
Community based rehabilitation (CBR) is a health intervention that has now evolved into a multi-sectoral approach that focuses on health, education, livelihood, social participation and empowerment.
“The principles of CBR are people-centred interventions that are delivered by appropriately skilled people within the community in an affordable way,” said Venkatesh. This involves creating infrastructure and training of community members and families to facilitate better inclusion of persons with disabilities in the society.
There is limited evidence about the impact of CBR on persons with disabilities, but existing research highlights multiple positive impacts.
A 2016 systematic review of 15 studies from 10 countries found that CBR improved clinical outcomes and enhanced functioning and quality of life of the people with disabilities. A 2019 study from Jagaluru in Karnataka found that CBR was effective in reducing out of pocket expenditure incurred by families of persons with mental illnesses.
In India, multiple NGOs have been operating small-scale community based rehabilitation programmes but there are no comprehensive national schemes that promote CBR.
In May 2021, the union government announced the launch of a six-month course called community based inclusive development (CBID) that aims to create a pool of grass-root rehabilitation workers at community level. These workers, called divyang mitra or friend of the disabled will be trained to provide rehabilitation services and help disabled people access government benefits, enabling inclusion of persons with disabilities in society. The course will be rolled out by the Rehabilitation Council of India (RCI), a statutory body regulating courses and training programmes for personnel working in the field of rehabilitation.
The first batch for the 6-month CBID course was meant to start in August 2021 but almost 2 years since, there is no clarity on how the pool of trainees would be deployed at the grassroots level. The press release from May 2021 mentions that divyang mitras will work alongside ASHA and Anganwadi workers but unlike the latter group of grassroots workers, there is no scheme or policy allocating funds for wages or other supporting infrastructure.
The problem, Sadasivan said, lies in that the RCI only focuses on training rehabilitation professionals. “It does not look at setting up rehabilitation centres or providing comprehensive rehabilitation measures to people with disabilities and catering to the last person in the community,” said Sadasivan.
Until such policies are in place, there is no clarity on how this programme would help Montu, Dasarath, Niranjan or any other disabled person living in rural and tribal areas with easier and improved access to rehabilitation or healthcare.
Reporting for this story was partly supported by the Population Reference Bureau (PRB) as part of its Public Health Reporting Corps initiative.
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(Shreya Raman is an independent journalist based in Mumbai focussing on gender, health, labour and public policy.)