New Delhi: For approximately 70 million persons with disabilities (PwDs) in India – many of who are dependent on caregivers or family members for their survival – developments over the last few weeks show that, while announcing the 21-day nationwide lockdown on March 23, the Centre did not pay much thought to how they would survive without any help.
It was only on March 31 that detailed guidelines were issued by the Department of Empowerment of Persons with Disabilities for issuing e-passes for PwDs, NGOs working for PwDs and their caregivers.
According to disability rights activists, many states have since followed suit and issued detailed orders to the civil administration to issue such passes in areas of their jurisdiction. However, all this has taken considerable time and millions of PwDs, as well as elderly citizens who require the support of caregivers, have suffered.
PwDs suffer from lack of medical care in the absence of caregivers
The Wire has learnt that in some cases elderly PwDs, who were completely dependent on caregivers for support, were left to fend for themselves for several days. One such lady, who is in a wheelchair and retired from a bank a few years ago, is now staying all by herself in West Delhi. She even slipped and fell in her bathroom after her caregiver could not attend to her.
Incidentally, the woman was herself an activist and has worked extensively in making banks more accessible. However, she found herself helpless in the face of the government order that did not consider the plight of PwDs upfront.
There are many persons with disabilities who require the use of medical equipment like catheters – that are used to pass urine into bags – on a daily basis and who are suffering as they have no one to help them during the lockdown. “Some faced issues like wet beds due to such problems,” pointed out a disability rights activist.
The problem was faced most by those PwDs who did not have any other family member to support them or in some cases, where their family members were too old or themselves dependent on the caregiver.
No provision for PwDs, caregivers in first exemption list
Founder of NGO Samarthyam and member of Standing Committee of Niti Aayog, Anjlee Agarwal, recalled the problems that her caregiver faced when trying to get a pass, soon after the imposition of the lockdown.
Agarwal, whose caregiver also looks after her mother and sibling, recorded in her Facebook post: “I started talking to local police and higher officers in the government. I was denied the curfew pass as I was ‘disabled’ and was asked to call ‘relatives’ to seek help during the lockdown. I was stunned by this kind of behaviour but could understand the gravity of the situation — they did not have any instructions/ orders on ‘disability inclusive response and consideration’ during lockdown.”
Agarwal said it was after much persuasion and after she used her contacts in the government, that her caregiver was finally able to arrange for a curfew pass after waiting for nearly five hours at the police station. “My priority was to get a curfew-pass for my caregiver and then move on to find solutions to this distress as there are senior citizens and people with disabilities (more than 20 million) and many have high support needs,” she said.
Delhi government e-pass showed the way forward
Agarwal said the following day that she had learnt that the e-pass, which was initiated by the Delhi government, could be the way to ensure a passage to the caregivers to the care-seekers’ place. “But, there were two issues,” she said, adding that “the e-pass could only be issued to services exempted by the government from lockdown, and till then, disability-related work did not form a part of these. Also, such a pass needed to be approved by a district officer.”
So, in order to get caregivers notified under the essential services allowed during the lockdown, Agarwal approached the Secretary in the Department of Empowerment of Persons with Disabilities under the Ministry of Social Justice and Empowerment. Even though he connected Agarwal to Delhi government officials and they guided her on how to apply for an e-pass online, it did not work out.
CCPwD letter calls for issuance of e-passes to PwDs within a day
What finally made a difference was a letter that the chief commissioner for persons with disabilities Shakuntala D. Gamlin wrote to all the state commissioners for PwDs on March 31 about the necessity to implement the guidelines for protection and safety of persons with disabilities.
The letter clearly spelt out that as per the guidelines, local movement passes for caregivers of PwDs during lockdown needs to be issued in a simplified manner on priority and that PwDs would also be given access to essential food, water and medicine.
She also noted that the office of CCPwD was receiving complaints regarding difficulties that PwDs were facing in accessing essential items and services of caregivers, maids due to the lack of issuance of travel passes to NGOs, PwD associations and caregivers. Thus, Gamlin directed the concerned authorities to streamline the issuance of local travel passes.
Most states take to issuing e-passes to PwDs, caregivers
Most states almost immediately implemented the guidelines and issued further directions to their civil administrations. Other states followed three or four days later.
In Delhi, on April 4 the state commissioner for PwDs, Ramesh Negi, issued directions to the e-pass issuing authority and data entry operators in Delhi to consider “Caregiver for PwD” as an essential service while processing the applications for e-passes and to issue such passes within 24 hours of application. On April 7, the Delhi government notified an e-pass for caregivers in the exempted category list.
In some other states, it took longer. One of these was Uttar Pradesh, where a similar order directing the issuance of e-passes to PwDs and their caregivers only came into effect on April 8.
State officers for PwDs, organisations form groups on WhatsApp
Agarwal said that over the past week a number of new encouraging developments for PwDs have taken place. A WhatsApp group of 28 senior state officials and the state commissioners for persons with disabilities has been created for coordination and expediting the process for approval of e-passes. Besides, Samarthyam has been in touch with 340 Disabled People Organisations (DPOs) across India to take up advocacy issues pertaining to essential services like food supply, medicines, assistive devices, para-medical and caregiver service for PwDs.
“Access to caregivers by PwDs was also minuted by CEO of Niti Aayog Amitabh Kant in a video conferencing meeting and the World Health Organisation has also advised keeping the concerns around PwDs in mind while making any plans for COVID-19,” she said.
Lack of sensitisation still an issue
But at the ground level, disability rights activists point out that greater sensitisation is still required. “A caregiver who was on way from Mangolpuri to Sarai Rohilla for attending to an elderly PwD couple there was not allowed to board a DTC bus on the pass he was carrying by the bus staff. Though he showed them his identity card, they still refused to carry him,” lamented a person with disability.
In some states, the insistence by officials on photocopies of Aadhaar, identity proofs and disability certificates have posed a problem as these facilities are closed. So, efforts are now being made to have states accept soft copies of these documents instead.
While such issues pertaining to awareness around the orders remains, rights activists are hopeful that a major concern of PwDs will be addressed as the issuance of e-passes to caregivers would soon grow.