Physical distancing is a privilege not many of us realise, especially for those who rely on others for basics such as taking a bath, getting dressed, going to the washroom, and eating.
Among the many things lacking in the way India is tackling the coronavirus pandemic is the absence of a disability-inclusive response to the crisis. Around 2.2% of India’s population lives with some form of mental or physical disabilities.
The definition of ‘disability’ presently includes 21 kinds of disabilities after the Rights of People With Disabilities Act was introduced in 2016. It includes anyone whose physical or mental ailments contribute to lack of mobility – for example, those with neurological and blood disorders, mental retardation and permanent inability to move, speak, hear, or see. It also includes those with deformities or injuries such as acid attack victims.
At Mumbai-based Shraddha Rehabilitation Foundation, which houses destitute mentally ill patients and reunites them with their families, the biggest challenge has been ensuring the safety of their inmates. “While many inmates have recovered well and are craving to go home, all reunion trips have been kept on hold for an uncertain period, after witnessing the sudden surge in cases and related deaths,” says founder Dr Bharat Vatwani. “A few inmates are experiencing homesickness, depression, and other such symptoms.” Handling medical emergencies is also a major challenge, he adds, now that beds and other facilities are preoccupied.
For the caretaker staff, there is an increased sense of worry for their families and relatives back home, along with a sense of helplessness when they watch recovered care receivers grapple with anxieties about their own families, with whom they are unable to reunite.
Meanwhile, Amrit Kumar Bakhshy, caregiver to his 21-year-old schizophrenic daughter Richa, says, “My daughter sees only me and the maid who comes to work, in particular, her illness has aggravated because of limited exposure to the outside world. We were visiting a psychiatrist once a month, but that’s been put on hold now. Caregivers are also affected in terms of bearing the brunt of their wards changing behaviours. My daughter refused to go for vaccination. I thought I’d enrol her in a halfway home due to worsening conditions, but they required a negative RT-PCR report, and she refused to submit a test for that either. We were finally able to send her, but it was tough, as she didn’t want to leave. These issues could perhaps have been avoided were there no restrictions on movement.”
What are some measures that PwDs (persons with disabilities) and caregivers can take at this time?
Dr Vatwani says, “Caregivers must ensure the provision of timely nutritious food for maintaining good health, as well as supplements to improve the immunity of PwDs. Moreover, get them vaccinated as soon as possible, depending on age and co-morbid specific protocols.”
He adds, “Limit outdoor activities to bare minimum. If there is a need to step outside, maintain protocols of masking, safe distancing, and sanitising. [For those who possess the physical and mental capabilities], incorporate a workout regime and eat nutritious food to maintain and improve immunity.”
Caregivers or PwDs living alone should keep an advance stock of groceries, medicines, and basic necessities. “Also, try to keep them engaged in timetabled activities to bring about a sense of control in their mental outlook,” Dr Vatwani adds. “Most importantly, take one day at a time.”
In the case of caretakers with more than one care receiver, it must be ensured that only one person maintains contact with the respective care receiver to minimise infection.
He also adds, “Care receivers should be kept engaged in regular and planned indoor activities. However, this is easier said than done. To some extent, interactive group sessions and games help maintain a stable frame of mind.” There should be regular checks on blood pressure and sugar to keep a check on comorbidities such as hypertension and diabetes, Dr Vatwani says.
As per the World Health Organisation, some issues being faced by these groups, which may contribute to them contracting the virus, includes:
- Inability of both caregiver as well as PwD to enforce physical distancing due to required support in daily activities.
- Pre-existing underlying health conditions of PwDs.
- The need to touch things to obtain information about the current environment or for physical support.
- Serious disruptions in the healthcare services that PwDs rely on.
Further, a report by the Government of India and the National Institute of Mental Health & Neurosciences states some additional problems such as:
- Caregivers being unable to restrict the mobility of older persons with disabilities, such as those with dementia.
- An increased sense of isolation due to not being able to socialise or go outside.
- An increased sense of anxiety, apprehension, fear, and depression.
- Breakdown in the daily routine for caregivers and increased facetime with their wards, mostly due to restrictions in other avenues.
As per NIHMAN’s guidelines, the intervention of a counsellor may aid the PwD in maintaining a better state of mind. Intervention may help in:
- Acknowledgment of the distress that the PwD is currently in.
- Provision of general mental health advice as dictated under common rules and guidelines for PwDs.
- Provision of specific advice unique to the PwD in terms of their disability and with context.
At this time, with physical movement being restricted, online avenues can be accessible in times of need. Some resources include:
- Radio Udaan is an online support group for persons with disabilities, and has people listening in from over 115 countries. Their radio station runs 24×7, is manned by persons with disabilities, and has helped over 15,000 PwDs find companionship, jobs, and love. You can read more about Radio Udaan on their website or here.
- For PwDs struggling with jobs, Atypical is an online talent platform that connects recruiters with job seekers with disabilities, so such persons can find work solely on merit. Around 400 job seekers have registered with the website so far. It includes categories such as photography, art, graphics design, physiotherapy, sign language interpreters, and so on. You can read more about Atypical on their website or here.
- Parivarthan for Parkinson’s is a Chennai-based support group for people with Parkinson’s disease, as well as their caregivers. For more information, you can visit their Facebook page.
- The Mind Clan offers curated lists of counsellors, events and workshops, support groups and group therapy sessions, and stories and resources. They have also listed helplines here which they verify and update regularly, and have also answered some frequently asked questions. For more information, visit their website.
- Nayi Disha is a resource platform for caregivers across India, especially for parents of children with intellectual and learning disabilities. It offers a detailed repository of verified services such as paediatric neurologists or instructors for dance, yoga, music, etc. It also provides extensive reading material on various conditions such as autism, and down syndrome, to name a few. It also has online support groups for parents and caregivers to prevent burnout and find respite in these challenging times. For more information, you can visit their website or Facebook page. You can also read more about them here.
Edited by Yoshita Rao