Persons with disabilities face double whammy of inaccessibility and official apathy in the pandemic

Even as two reports on the impact of the pandemic on people with disabilities point out cracks in the system, disability rights advocates complain about the inaccessibility of services and information during the lockdown and demand several concessions from the Central government, including free door-step vaccination.

Persons with disabilities, such as this man in Guwahati, are at a heightened risk of poverty in the absence of any support offered by the Central government in the COVID-19 pandemic.

A sizeable section of society faces the double whammy of disability and official apathy towards their special needs amid the raging second wave of COVID-19 across the country. For people working on disability rights, hardly a day passes when they do not come across situations where the disabled have been suffering in the most unanticipated ways.

Sudha Ramamoorthy, who works with the Centre for Promotion of Social Justice, narrated the stories of two single mothers in Chennai. She said: “In the first case, an elderly woman in Saidapet, a cancer survivor, tested positive for coronavirus recently. While she was home-quarantined, it took us a frantic search for about four-five hours to arrange a person to look after the son—who has learning disabilities and is non-verbal—in the same house, as he had nowhere else to go. In the second case, a young woman in Pallavaram, who has cerebral palsy, had to be shifted to another home after her mother got infected by the virus. In both cases, some people in their individual capacities are bearing their expenses in this crisis.”

The Tamil Nadu government has set up special helplines and has been ensuring essential supplies to disabled persons and their caregivers through a network of non-governmental organisations (NGOs). “However,” Sudha Ramamoorthy said, “we had to seek the intervention of the commissioner of the Commissionerate for Welfare of the Differently Abled to arrange help for disabled persons in certain cases in this pandemic.” She added that with the exception of Tamil Nadu and a few other States, disabled persons were facing bigger crises in the rest of the country.

According to Census 2011, there are 26.8 million people with disabilities in India, constituting 2.2 per cent of the total population. This number is greater than the combined populations of Ireland, New Zealand, Austria, Uruguay and Kuwait. While the Rights of Persons with Disabilities Act 2016 uses a more inclusive definition of disability, over 46 per cent of the elderly (aged 60 and above), also experience moderate to severe disabilities, according to experts.

Guidelines not implemented

The Ministry of Home Affairs (MHA) invoked the Disaster Management Act 2005 for the first time on March 25, 2020, and again on April 29, 2021 to deal with the COVID-19 pandemic. Activists for disability rights complain that the National Disaster Management guidelines on Disability-inclusive Disaster Risk Reduction 2019 and the guidelines issued by the Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment, besides a set of recommendations of the National Human Rights Commission issued last year, have scarcely been implemented on the ground.

Poonam Natarajan, former chairperson of National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities, Ministry of Social Justice and Empowerment, said that the implementation of government guidelines varied from State to State and most people did not feel supported.

Last year, two prominent study reports on the impact of the pandemic on disabled during the first COVID-19 lockdown had pointed out cracks in the system. Titled “Too Little, Too Few: An analysis of the social protection response to COVID-19 crisis for persons with disabilities”, the report stressed that the guidelines must be reflected in the State’s disaster response and recovery strategies. The report stated: “Persons with disabilities and their family members who are part of the informal sector are disproportionately impacted due to loss of work and income. Poverty coupled with social stigma has led persons with disabilities getting limited share of food, in some cases resulting in starvation and death.” It added that the lack of adequate data on persons with disabilities at all levels had adversely impacted the delivery of services by responsible agencies in most parts of the country.

The other report, titled “Locked Down and Left Behind”, published by the National Centre for Promotion of Employment for Disabled People, had demanded specific isolation wards in every district for persons with disabilities affected by COVID-19, where the patient could be accommodated with a caregiver to help them cope with the unfamiliar situation and to attend to the specific needs of the disabled person. Asserting that persons with disabilities and their families be given priority in treatment in line with the recommendations of the World Health Organisation, it also recommended that all persons handling emergency response services should be linked to organisations specialised in disability in the locality to address problems faced by persons with specific impairments. The study also pointed out that the majority of persons with disability were engaged in the unorganised sector, and have had their livelihoods completely destroyed due to the lockdown and needed adequate financial assistance.

Abandoned and lonely

In the wake of the lockdown, Javed Ahmed Tak, who heads the Humanity Welfare Organisation Helpline in Kashmir, said that both basic supplies such as diapers, catheters, urine bags, medicines and life-saving services such as blood transfusion in case of thalassemia and sickle-cell anemia, dialysis and counselling were not accessible to the disabled with high support needs.

Poonam Natarajan said: “The pandemic since last year has been very hard on people with disabilities. The social security amount of Rs.1000—which was highly inadequate—did not reach all people, as the problem of disability certificates has still not been solved. Entitlements without disability certificates are not possible. This remains a major problem, especially for the new disabilities included in the Rights of Persons with Disability Act and for Autism. They need to fast-track the process of issuing disability certificates.” She added: “In this wave, a new issue is people with disabilities losing their parents, who are almost always the primary caregivers. How we’re going to support them is the big question. The facilities for them are very few and the need for each one is immediate. There is a lack of trained caregivers.”

Srikishan Ahirwar, president of Madhya Pradesh Viklang Adhikar Manch, rued: “The disabled in our State are not even getting the paltry amount of Rs.500 in time under the State government’s monthly pension scheme for the persons with disability.” He added: “Several disabled persons have lost lives to coronavirus in our State for want of timely health care services.”

Inaccessibility

Meenakshi Balasubramanian, who is associated with Disability Rights Alliance Tamil Nadu and Centre for Inclusive Policy, complained about the inaccessibility of services and information for deaf-blind persons and persons with learning disabilities. Stressing that the National Disaster Management Guidelines on Disability Inclusive Disaster Risk Reduction must be reflected in the disaster response and recovery strategies, she said: “There are very few persons with disabilities, especially the women, who use smartphones due to lack of affordability and education. Even the Aarogya Setu app and the CoWin app, which the Central government has been touting for vaccination, are not accessible to visually impaired people. The government itself has created barriers for them. Then there are no walk-in facilities for the disabled.”

J.L. Kaul, secretary general of All India Confederation of the Blind, said that the disabled are at a greater risk as they cannot observe social distancing owing to their reliance on personal contact for support. Kaul added: “People are also scared of extending a helping hand to the disabled due to the pandemic. In many cases, disabled corona patients have lost lives in the hospitals with no one by their side to help them use the toilet or even take food.”

Civil society groups affected

Javed Ahmed Tak said: “We haven’t received any help from the government this year. The Union Territory administration is completely focussed on Covid clinical management. Last year, it provided rations to the poor families of the disabled.”

The majority of the civil society groups in the disability sector have been hit hard by the legal and regulatory changes made by the Narendra Modi government last year. The key changes to the Foreign Contribution (Regulation) Act (FCRA) have ensured very few NGOs can directly accept cash donations from abroad at a time when even the Central government has been forced to look outside the country for critical supplies. Of more than 22,400 NGOs in the country with an active FCRA licence, only about 3,600 (or 16 per cent) have managed to comply with the onerous new regulations and can now continue to receive funds post April 1, 2021, according to an analysis by DevelopAid Foundation.

Tak added: “Due to changes in the funding procedures, our financial resources have completely dried up. Our FCRA account is in the process of renewal. The new compliance procedure is so complicated that it has discouraged both donors and the donees. Now we are completely dependent on local charities. And we are still in a position to help people with disabilities this year only because of the funds that we raised as zakat [almsgiving] this Eid.”

In an average year, Indian NGOs used to receive about Rs.16,800 crore in foreign donations, according to Ingrid Srinath, director of the Centre for Social Impact and Philanthropy at Ashoka University, New Delhi. Urging that the implementation of the restrictive changes in the FCRA and tax laws be suspended during the pandemic period in order to encourage funding to the NGOs, she said: “A chunk of this money has now been taken out of the system, at a time when it is most needed.”

J.L. Kaul lamented that the changes in regulatory mechanism had an impact on his organisation as well. He said: “All the compliance procedures have been shifted to online mode—which is a complicated process. Due to financial constraints, we can’t hire tech-savvy staff for such work and thus we can’t receive funds. With businesses shut in the wake of lockdown, the NGOs are not receiving funds from even local donors.”

Shishu Sarothi, a non-profit organisation working with children with disabilities since 1987, has been running a helpline for the disabled during this pandemic in Guwahati. Ketaki Bardalai, executive director of Shishu Sarothi, said: “The State Disaster Management Authorities really don’t know how to deal with disability but it’s clearly written in the Rights of Persons with Disabilities Act. There is an urgent need for a multi-pronged strategy to provide financial assistance to the families of disabled persons, ensure vaccination and counselling services. We have written to the Director, Health Services, requesting him to set up a vaccination camp for the disabled and are waiting for the response.”

Recently, over 160 disability rights organisations and activists requested Prime Minister Narendra Modi to provide free door-step COVID-19 vaccination for people with disabilities and their caregivers, citing their physical vulnerabilities, pre-existing medical conditions and communication barriers. Incidentally, the Bombay High Court recently pulled up the Modi government for refusing to start door-to-door vaccinations for senior citizens and persons with disabilities.

Muralidharan Vishwanath, general secretary of National Platform for the Rights of the Disabled, said: “In the written representation, we have demanded Rs.7,500 per month as ex-gratia to all disabled during the pandemic period. We have also demanded free ration and free food kits, jobs under the Mahatma Gandhi National Rural Employment Guarantee Act and the proposed Urban Employment Guarantee Act. We also want toll-free helplines in all the States, besides separate toll-free helplines for mental health.”

Arguing that the pandemic has put the disabled persons at a heightened risk of poverty, disability rights advocates have demanded concessions from the Central government. Vaishnavi Jayakumar, member of the Disability Rights Alliance India, who was at the forefront of nationwide #WhyTaxDisability campaign, said: “Our campaign was successful in getting the goods and services tax (GST) brought down to 5 per cent from a bizarre 28 per cent on several goods. We have been asking for zero per cent GST with input tax credits.”

Vaishnavi Jayakumar added: “There’s an abiding anger when one sees the speed at which the Indian government has reduced import burdens and waived rules during the second wave of COVID particularly. But none of this haste and priority is demonstrated when it’s a minority group facing equally life-threatening shortages as is the case with Vigabatrin, a critical drug for infants with seizures which is unavailable suddenly due to the lockdown. The near complete absence of diversity planning in crisis management is heinous. Because we are a minority group, no one is paying us heed.”