Mathivannan*, a person with disabilities in Chennai has been struggling to find food for the last 10 days. Since the lockdown began on March 25 for containing the spread of COVID-19, he has approached almost all possible avenues in the lookout for food and ration.
“From the Amma Unavagam to NGOs stepping in with cooked food and supplies — I tried all possible options. Some organisations told me that there weren’t enough provisions to be spared for us. We are 150 people with various forms of disabilities in Kannagi Nagar off the OMR IT corridor,” he said.
However, the ordeal for people with disabilities doesn’t stop with food and everyday supplies, from medical visits to access to medicine, there is a long array of problems.
Affected in all possible ways
Smitha Sadasivan, a person with multiple sclerosis (MS), and member of Disability Rights Alliance explained that lack of physiotherapy and other therapies lead to more fatigue (physical/mental/cognitive) and spasm.
“Low immunity and daily meds of immuno suppressant come with the risk of contracting any infection easily. Taking medicines for any new infection becomes a huge challenge as well as in terms of diagnosis and new treatment. Going to hospital is a real time issue. Stock of usual medicines and regular doctor review are another concern during crisis time,” she said.
She observed that some people with MS need to travel to nearby cities for taking regular infusions such as avonex and Tysabri are getting stuck at homes.
“Government ambulance service is not reliable due to the possibility of contracting an infection from the ambulance itself, not just the hospital. Transporting adequate supplies such as diapers, catheters, urine bottles, dietary supplements, medicines, and other essentials are also getting difficult at this lockdown period,” she said.
“Needless to say about the mental health issues that are being faced by persons with MS during the lockdown period, especially those who were receiving regular visits from the medical social workers and also taking sessions from psychiatrist and psychologist. Elderly parents being our caretakers contracting our general infection or contracting something when they go out to get some essentials are major concerns,” she added.
In Kolkata, without a dedicated helpline in the state for the population of people with disabilities, disability rights activists like Shampa Sengupta have come together to form help groups for those in need.
Shampa said, “We have just one helpline in the state relating to COVID-19 and that cannot be utilised by the people with disabilities as the waiting time is long. When we approached the disability commissioner, he told us that they are not part of the special task force and can do nothing about the plight of the people. Those availing disability allowance of ₹1000 per month are unable to receive it due to the lack of transport.”
“From finding helpers for those who need them to arranging for blood transfusion, there is no way out for the challenges the population is facing now,” he said, adding that while the police in West Bengal has been extremely helpful, there is only so much that they can do.
Some like Mumbai-based Virali Modi, a person with locomotor disabilities, reached out to the Maharashtra government and Centre via Twitter last week to highlight her plight.
As someone who lives alone, she is dependent on her maid for her day to day activities. She has received help through a Rajya Sabha MP Bhagwat Karad from BJP.
Guidelines issued by Centre late and inadequate
Muralidharan, general secretary, National Platform for The Rights of Disabled (NPRD), said the guidelines for the ‘protection and safety of persons with disabilities’ should have been issued as early as March 5, while it came much later in the end of March.
“The guidelines say that persons with disabilities should be given access to essential food, water, medicine, and, to the extent possible, such items should be delivered at their residence or place where they have been quarantined,” he said.
It is apprehended that the rider ‘to the extent possible’ is more likely to be misused to deny such a service. The guidelines also fail to suggest measures to ensure uninterrupted supply of blood to people with blood disorders like Thalassemia who require regular blood transfusion as also oxygen cylinders in some other disorders, he pointed out.
He said a majority of disabled earning their livelihood are in the unorganised sector, doing petty hawking.
“These guidelines do not address their concerns nor of the homeless disabled. Various studies have indicated that no less than 65% of the disabled population are unemployed. The guidelines fail to suggest any measures to address their concerns. ₹333.33 per month ex gratia announced by the Finance Minister, is grossly inadequate. Social security measures have to take into account the extra expenditure that disability entitles, more so in such situations. We would therefore request to urge the Finance Ministry to enhance the ex gratia to ₹5000/- per month,” he added.
While the guidelines do suggest online counselling mechanisms, it restricts this to the quarantine period only.
“People with disabilities, especially those with mental health. issues have had their conditions aggravated during this period. Specific measures for those with psycho-social disabilities residing in hospitals, residences or streets need to be put in place. Trained professionals may be given responsibility to chalk out plans as per needs of specific groups. This should also include telephonic counselling facilities,” he added, highlighting the contents of a letter written by the NPRD to the Ministry of Social Justice and Empowerment.
Muralidharan also said that from across states, they have been receiving complaints about the various disability commissioner being inaccessible for the population.
“There are also reports that institutions housing persons with intellectual disabilities etc are being closed in some places. This is impermissible. The guidelines need to specify that closing down of such institutions would not be tolerated during such times. These institutions should be monitored and physical distancing ensured within their premises,” he said.
Bright spots, but with hiccups
States like Tamil Nadu have come up with a dedicated helpline to reach out to those with disabilities. There is also a dedicated number for reaching through Whatsapp and video calling facilities for those with hearing and speech impairment.
The State Commissionerate for Differently Abled has also come up with a list of coordinators across all districts for physical therapy for those with disabilities.
However, for Kavitha, who is hearing impaired, has not been able to reach the helpline. Suffering from asthma and living on her own, she has no option left.
“I have tried the helpline numbers several times but I get no response. I have been in dire need of groceries and vegetables for the last few days,” she said.
Johny Tom Varghese, state commissioner for persons with disabilities, admitted even as the services are for those who have no help and for senior citizens, there has been a spike in the calls for the last six days.
“We have received over 6400 calls on the last six days. The numbers are registered and they go into the centralised groups comprising the district administration and social welfare officers who deliver the food, grocery and medicines, and medical devices like catheters and urine tubes. But with so many callers it has become difficult for us to attend to all their needs,” he said, adding that the state has disbursed two-month allowance of ₹1500 per month in advance.