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Submitted by Sen on 27 March 2020

Covid 19 has spread its fangs across more than 199 countries with casualties mounting by the hour. India is battling it out too by announcing a 21 day complete lockdown. But how is this lockdown affecting the senior citizens and people with disabilities? Moyna Sen takes a look.

The lockdown in India for three weeks on account of the Covid 19 crisis: the world over is bound to have far reaching consequences on various fronts, which we cannot even begin to assess because this is an unprecedented phenomenon in our living memory. But the present, which is difficult for all of us, is rather grim for people with disabilities who are now living on the edge because many with severe and profound disabilities are dependent on caregivers for their activities of daily living and that of a quality life. If disabilities can be categorised into two categories, bench mark disabilities comprising speech and hearing impairments, visual and locomotor, etc being the first, and the second category with those with high support need having cerebral palsy, multiple disabilities, muscular dystrophy, etc. who need assistance/personal care support 24/7, then one can only imagine what this lockdown means for them and how they need the government to be proactive about having a proper plan in place urgently.

Anjlee Agarwal, International Accessibility Specialist and founder of Samarthyam – National Centre for Accessible Environments and a Member, Standing Committee, Niti Aayog, herself wheelchair user with muscular dystrophy, is not just an activist who is trying to help people in this hour of distress, but is facing enough trouble to have her own caregivers in place. “There is no mention of ‘Special passes for caregivers’ in the essential services guidelines, which is why many senior citizens and persons with disabilities are suffering,” says Anjlee. “The Covid 19 crisis needs a response that is neither reactive, discriminatory nor apathetic”. Anjlee has been spreading the word through her social media accounts for people to send their addresses, their caregivers’ addresses and also copies of their IDs to whatsapp numbers of their respective government authority zones in Delhi for the Curfew Passes to be issued to their caregivers. She is also working towards the inclusion of E- passes for Caregivers in the directory for the Ministry of Home Affairs and Ministry of Social Justice & Empowerment to make it easier for the senior citizens as well as for people with disabilities.

Anjlee Agarwal lives with her brother, who also has muscular dystrophy and needs caregiver assistance and mother who is in her mid eighties with a history of heart ailment and surgeries, also needing assistance. She, therefore, fully understands the meaning of vulnerability and what the situation can spiral into with the lack of caregivers. Having worked in this field for many years, she knows some people who are in senior official capacity in the government and otherwise. Which is why when she receives calls from senior citizens who need adult diapers or those who desperately need their domestic helps because they suffer from serious spinal injuries and cannot even wash their own utensils, she tries to help them out with helpline contacts. When a friend tells her that Gurgaon is allowing domestic helps to come in for senior citizens, Anjlee tweets the same to the Ministry of Social Justice and Empowerment to make it effective in Delhi too. The Ministry has promised to look into it. But the government directive should reach each and every corner of the country, so that the police cannot turn back and say they are helpless.

According to Anjlee, there are 5 main challenges that we need to look into as far as people with disabilities or the senior citizens are concerned:

  1. The physical, emotional and mental well being of the person should not be hampered
  2. Medical supplies and immediate medical help should be ensured
  3. Important that maintenance facilities for assistive devices and aids/appliances like the wheel chair/walker, etc. should be available
  4. Quick and immediate help should be available in case of accidents- falls, fractures, burns and cuts
  5. Safety should be ensured, as vulnerable people are more likely to be crime targets.

Anjlee Agarwal has been at the receiving end of a huge number of calls and emails from across India last few days of the lockdown and curfew, which has helped her have a fair idea of some of the issues that the senior people and those with disabilities are facing on a day to day basis. Mobile connectivity issues plague large swathes of the capital, rendering people helpless in trying to get medicines and supplies or even help when they need it the most. Many people also do not know which number to call when they need help. Anjlee feels these numbers should be displayed on television in bold, should be shared in bulk sms and also across whatsapp groups. And there should be numbers for daily supplies of milk, bread and eggs, groceries, etc. because they cannot be hoarded at one go.

A particular patient who needs Parkinsons’ medicines as a 15 day course at one stretch, found himself at his wits’ end when the 21 day lockdown announcement came at 8 pm, soon after which medicine shops had run out of supplies. The government should have been more vigilant about these essential supplies, feels Anjlee. People needing regular supplies of adult diapers, catheters and even sanitary pads are also facing similar problems and these are things without which they cannot operate on a daily basis. Everyone’s needs are different, but in times of emergency, 5 to 7 minutes should be the response time to a call asking for help, beyond which things can easily go out of control and be fatal. The government also needs to assure this for the people who are dependent on outside help. As of now, most helplines are either not reachable, engaged or simply overwhelmed. A number does not always mean there is help on the other side. And authorities need to look into this very seriously.

But with the Corona virus raging all around us, it is also important for outside helps and caregivers, when they come in, to maintain hygiene, like changing clothes, washing hands and not touching door knobs etc, immediately after they step into the house. It would be ideal, of course, if the caregivers can stay back with care seekers, which might not always be feasible as they also have family commitments.

There is really no plan in place to look after the vulnerable section of our society. One is not sure how long the lockdown will last, and whether it may go beyond 21 days or not. The government and the health and home affairs ministry need a quick plan and implement it soon so that help and supplies are available to the people who need assistance and support.

But even as this article is being shared with our viewers, Anjlee Agarwal’s tireless efforts seem to have paid off, and the Ministry of Home Affairs and Ministry of Social Justice & Empowerment has issued directives and guidelines to all chief secretaries, to be shared appropriately with all concerned authorities. The salient points of the guidelines are as follows:

  • During quarantine, essential support services, personal assistance and physical and communication accessibility should be ensured, e.g. blind persons, persons with intellectual/mental disability (psycho-social) are dependent on caregiver support. Similarly persons with disabilities may seek assistance for rectification of fault in their wheelchair and other assistive devices.
  • Caregivers of persons with disabilities should be allowed to reach Persons with disabilities by exempting them from restrictions during lockdown or providing passes in a simplified manner on priority.
  • To ensure continuation of support services for persons with disabilities with minimum human contact, due publicity needs to be given to ensuring personal protective equipments for caregivers
  • The Resident Welfare Associations should be sensitized about the need of persons with disabilities so as to allow entry of maid, caregiver and other support providers to their residence after following the sanitizing procedure

Reference attached:

1. Email to the chief secreatries

2. Disability Inclusive Guidelines