|Year : 2020 | Volume
| Issue : 5 | Page : 44-49
COVID-19 pandemic-related lockdown: Effects on persons with disabilities in India
Rajendra Prasad1, Anandita Lidhoo2, Tarun Lala3, Prateek Sharma4, Anjali Lodwal4, Manish Jaiswal5, Shagufta Nayar5, Charu Khatri6, Surbhi Vyas6, Umaid Singh Deora6, Shikha Vaswani3
1 Indian Head Injury Foundation; Department of Neurosurgery, Indraprastha Apollo Hospitals, New Delhi, India
2 Department of Psychology, Ashoka University, Sonepat, Haryana, India
3 Indian Head Injury Foundation, Indraprastha Apollo Hospitals, New Delhi, India
4 Indian Head Injury Foundation Neurorehab Centre, DCWA, Delhi, India
5 Indian Head Injury Foundation Neurorehab Centre, Patna, Bihar, India
6 Indian Head Injury Foundation Neurorehab Centre, Jodhpur, Rajasthan, India
|Date of Submission||06-Jul-2020|
|Date of Acceptance||25-Jul-2020|
|Date of Web Publication||19-Aug-2020|
Department of Neurosurgery, Indraprastha Apollo Hospitals, New Delhi - 110 002
Source of Support: None, Conflict of Interest: None
Introduction: To study the impact the COVID-19-related lockdown on persons with disabilities (PWDs), we conducted a telephonic survey of (n = 120) participants in four major cities of India (Delhi, Hyderabad, Jodhpur, and Patna). The survey was conducted twice-once in Phase 2 (April 15, 2020–May 3, 2020) and again in Phase 5 (June 1, 2020–June 30, 2020) of the lockdown. Methods: A questionnaire was prepared for this survey of PWDs to understand the following: participants' understanding of the prevention of COVID-19 handwashing technique, use of facemasks, social distancing and sanitization directives, their type of disability, and extent of dependence on caregivers, along with their financial situation and food and medicine availability. Results: From the PWDs surveyed, the main impact of the prolonged lockdown was on mental health, limited ability to work from home, lack of access to rehab professionals or rehabilitation units, and external caregivers, along with difficulty in repair of assistive technology devices. They relied largely on family for finances, activities of daily living, and food and medicine supply. On the positive side, most had access to information on COVID-19 and an understanding of the health and safety guidelines. Discussion: The authors recommend the development of an updated national database of PWDs and the elderly and to establish tele-medicine and tele-rehabilitation services for this group of people to ensure uninterrupted physiotherapy, mental health counseling, and treatment for their comorbid conditions. They advocate for an increase in government support to PWDs in these times and provision of medicines, masks, gloves, and sanitizing products at subsidized rates.
Keywords: Activities of daily living, coronavirus, COVID-19, persons with disabilities
|How to cite this article:|
Prasad R, Lidhoo A, Lala T, Sharma P, Lodwal A, Jaiswal M, Nayar S, Khatri C, Vyas S, Deora US, Vaswani S. COVID-19 pandemic-related lockdown: Effects on persons with disabilities in India. Apollo Med 2020;17, Suppl S1:44-9
|How to cite this URL:|
Prasad R, Lidhoo A, Lala T, Sharma P, Lodwal A, Jaiswal M, Nayar S, Khatri C, Vyas S, Deora US, Vaswani S. COVID-19 pandemic-related lockdown: Effects on persons with disabilities in India. Apollo Med [serial online] 2020 [cited 2021 Oct 20];17, Suppl S1:44-9. Available from: https://www.apollomedicine.org/text.asp?2020/17/5/44/292705
| Introduction|| |
The COVID-19 pandemic has necessitated India to be in various phases of lockdown between the March 24, 2020, and June 30, 2020. Of the 1.3 billion Indians asked to stay home, there are about 26 million persons with disabilities (PWDs), and 103.9 million senior citizens who need special consideration.
The potential difficulties faced by PWDs and many elderly come from their varying degrees of motor impairments affecting locomotion and activities of daily living (ADLs), vision, hearing, communication and cognition, or often a combination of the above. Many also have comorbidities, making them more vulnerable to the complications of COVID-19, for example, hypertension,, heart disease,, diabetes,, and impaired respiratory function., The lack of physiotherapy and professional caregiving due to the lockdown may increase their disability and dependence. Many of them may also have difficulty practicing physical distancing due to the lack of space, dependence on external caregivers for their ADLs, or due to being institutionalized. Financial constraints, limited access to health care, lack of work-from-home opportunities, and total absence of social services support would further aggravate the difficulties faced by them during lockdown., Therefore, it is imperative that there is a system in place to ensure that PWDs and the elderly, along with their caregivers, are supported by the community and the government during times of prolonged crisis.
To evaluate the effects of the COVID-19 lockdown on PWDs and to frame recommendations, the Indian Head Injury Foundation (IHIF), a nongovernmental organization working in the field of neurorehabilitation, conducted this survey on PWDs, mainly in four cities of metropolitan India.
| Methods|| |
The participant pool (n = 120) was gathered via convenience sampling from prior attendees of the three neurological rehabilitation centers run by IHIF at Delhi, Jodhpur, and Patna, along with a Spinal Cord Injury Network of Hyderabad and its surrounding districts. The participants were PWDs with various neurological diseases.
Of the total 128 participants contacted, 112 were contacted by IHIF, accounting for a 100% response rate, while 16 participants volunteered from the Hyderabad network. Since there were eight dropouts observed over the course of the study, the attrition rate was 6.25%.
The survey was conducted twice over the course of the lockdown during Phase 2 and repeated during Phase 5. The same questionnaire was used on both the occasions to assess any changes during the course of the lockdown. The 32-item questionnaire was designed and conducted by the research team, which included six IHIF (occupational and physical) therapists. It covered the following:,,,,,,
- Understanding of the hygiene directives of the World Health Organisation (WHO), which included proper hand-washing technique, sanitization, usage of face masks, and social distancing measures
- Ease of frequent handwashing, including the accessibility of washbasins, soap, sanitizing products, and water supply
- Adequate sanitation of the surfaces that PWDs come in contact with, including wheelchairs, canes, walkers, railings, and accessories such as glasses, keys, and mobile phones
- Availability of caregivers for ensuring regular supply of meals and medicines and to assist with ADLs such as eating, bathing, dressing/grooming, brushing teeth, and toileting/continence, as before the lockdown
- Availability of finances for their needs through personal funds, family, or government support.
The purpose of the survey was explained to the participants and telephonic consent for participating in the research was taken. For participants under the age of 18 years, consent and responses were provided by parents. Participants were assured of their confidentiality, as well as told that they could quit the study at any time. Responses were then either gathered through phone call or filled on Google Form. Those who were not aware of the WHO guidelines on prevention of COVID-19 infection were educated regarding the same.
| Results|| |
Most of the participants were from urban cities of India, New Delhi (n = 48), Patna (n = 25), Jodhpur (n = 40), and Hyderabad (n = 4). A couple of the participants belonged to other districts of Telangana (Pedapalli = 1, Warangal = 1, and Rangareddy = 1).
The 120 participants ranged from 6 to 88 years of age, with a mean age of 47.54 years (standard deviation = 20.07). Senior citizens (those above 60 years of age) comprised 33% of the participants, while those under 18 years of age comprised 5% of the pool. Males occupied 68% of the participant pool, while 32% were female.
Majority of the participants were educated, up to the undergraduate level in 47.9% and postgraduate level or above in 25%. 10.8% had completed class 12 and 16.7% had studied up to class 12 [Figure 1]a.
|Figure 1: (a) Education Level. Original. (b) Type of disability. Percentages add up to more than 100 due to cases with multiple disabilities. Classification done on the basis of the rights of persons with disabilities act 2016. Original. (c) Level of dependence in activities of daily living. Original|
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The reported disabilities were noted according to the Classification of Disabilities of the Rights of Persons with Disabilities (RPWD) Act 2016. 54.7% of the disabilities were from chronic neurological conditions, 35.9% were locomotor disabilities, and 3.9% from cerebral palsy. Hearing impairment (2.3%), speech and language disability (2.3%), and low vision (0.8%) accounted for the rest [Figure 1]b.
In summary, the disabilities were mainly (90%) in motor activity of the upper and lower limbs, resulting from several causes including Head and Spine injuries, Cerebral Palsy, Stroke, chronic neurological conditions like Parkinsonism, Brachial Plexus injuries, and Multiple Sclerosis. Locomotor disabilities included those due to arthritis of the spine and joints of the lower limb. In addition, 50% of the participants reported comorbidities such as diabetes, hypertension, or respiratory illnesses like asthma.
As per analysis, 49.2% of the participants reported to be partially dependent and 23.4% were totally dependent on caregivers. 27.3% of the participants were completely independent [Figure 1]c. Hence, 72.6% were dependent on caregivers, partially or totally. 89.1% of the participants lived in households with three or more members.
Care and assistance
Of the participants, 76.2% relied on family caregivers and 23.8% on external caregivers. Of those with external caregivers, 75.5% reported the inability of these caregivers to come home during the lockdown [Figure 2]. In addition, 46% reported that their external caregivers do not wear masks while attending to them.
|Figure 2: Caregivers: family versus external, and their availability. Original|
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Of the 66.9% of participants relying on assistive technology (AT) devices, 37.7% reported problems with their devices, which could not be repaired due to the lockdown. The devices used were mainly wheelchairs (25.4%), walkers (23.7%), spectacles (12.7%), AFOs (5.9%), and hearing aids (3.4%), among others. 17.7% were unable to sanitize them regularly.
Food and medicine
Most of the participants (81.9%) were able to avail food and medicine either themselves or with the help of their caregivers or direct home delivery. 18.1% who had difficulty reported a variety of reasons. Some cited living in an inaccessible area to be the cause, while others stated that delivery services had been suspended and they were unable to go out. This was particularly important in the case of one respondent who was currently also suffering from cancer and needed medication for the same.
In addition, the respondents from Telangana were aware of a government helpline, which was supposed to assist spinal cord injury patients in procuring free food, medication, and wheelchairs. However, these respondents were not able to avail these provisions through the helpline. There were also problems with procuring appropriate ration and pension cards.
Physical and mental health
About 31.2% were unable to do exercises at home. Reasons were typically lack of space or the inability to go to the rehabilitation centers that they were visiting before the lockdown. Few participants also mentioned a resultant decline of motor function. In addition, 76.9% of the respondents indicated an interest in exercise clips or video consultations for at-home exercises and guided physiotherapy through tele-consultation [Figure 3].
|Figure 3: Physiotherapy: Practice and interest in online content. Original|
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In Phase 2 of the lockdown, 22% of the participants expressed mental health concerns like stress, anxiety, claustrophobia, aggression, and depression due to the lockdown. A majority (85%) did not feel the necessity to have professional counseling during the first survey. This changed by Phase 5 of the lockdown, with 65% of participants interested in counseling and 35% of the participants expressing mental health concerns. Despite the indication of interest, only 30% of these participants had sought or had access to counseling services (86.7% via call, 13.3% in person).
Only 23% of participants were employed (15.1% were self-employed and 7.9% in jobs). Of these, 84.6% were unable to work from home. 54% of the participants relied on family for financial support for their personal expenses and health care. Only 20.3% of those surveyed relied on the Government Disability Allowances for financial support [Figure 4].
COVID-19 Awareness and practice of health and safety guidelines
Most of the participants surveyed were well aware of COVID-19 and its effects on their health. Ninety-three percent of the participants reported an understanding of the reasons for the lockdown and the need for social distancing [Figure 5]a. Their sources of information were primarily television, WhatsApp, the Internet, newspapers, and the radio.
|Figure 5: (a) Response to COVID-19 awareness questions. Original. (b) Response to questions on the practice of health and safety guidelines. Original|
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Almost 95% of the participants reported using masks and gloves whenever they or their caregivers went outside for necessary supplies. However, only 61.6% of the respondents were able to practice physical distancing at home. 23.6% were not able to wash hands regularly [Figure 5]b due to their disability and lack of PWD-friendly restrooms in public areas. In addition, despite easing of the lockdown, 70% had not gone out since the restrictions had been lifted.
In summary, the PWDs interviewed were fully aware of the dangers of COVID-19 including the risk to life and the need for the lockdown. They were also aware of social distancing, the use of face masks and gloves, as well as the technique of hand-washing. Majority of them relied mainly on the family for financial and caregiving support. A very small percentage received government subsidies despite being eligible (example, Telangana's SCI group having been denied Aasara pension). Most respondents reported a decline in their motor skills due to a lack of exercises and formal physiotherapy sessions. Mental health issues remain the main challenge, with a third of the participant pool experiencing issues such as stress, aggression, claustrophobia, anxiety, and depression, among others. Furthermore, 86% of these participants had not received counseling services.
However, further larger surveys will be necessary to cover the effects of the lockdown on PWDs and the elderly, including those living in villages and smaller towns.
| Discussion|| |
While PWDs were well versed on the health and safety guidelines to be practised, there was limited information targeted toward PWDs and caregivers in the mainstream news and media.
In high-income nations, government-run social service departments are well-established, and inpatient neuro-rehabilitation centers are available for those who are fully dependent. In India, however, families remain the main source of financial, caregiving, and psychological support. Professional, even untrained caregivers, are expensive. This number would be even smaller in the smaller towns and rural areas. Therefore, certain training must be given to family caregivers, and subsidized caregiving services at home must be provided to those in need.
The disabilities were classified on the method described per the RPWD Act 2016, a method that requires serious revision due to considerable overlap in categories and may cause flaws in research. The disabilities in this group were largely motor (upper and lower limb) from various chronic neurological conditions. Regular physiotherapy at neurorehabilation centers together with exercises at home is important for their continued mobility, ADLs, and independence. The lockdown had a deleterious effect on this count in majority of the cases. Therefore, the authors recommend developing tele-rehabilitation services for physical, occupational, speech therapy, and psychological counseling, especially for PWDs with smartphones to ensure accessibility.
A major issue reported by 33% of the respondents was mental health concerns. This included anxiety, depression, and claustrophobia. Counseling was available or sought in only 16% of these people. Besides financial constraints, respondents felt that their issues were not “serious enough” to require counseling. These mental health issues increased from 22% to 33% over the course of the lockdown. Easy availability of mental health professionals through tele-medicine would go a long way in improving the status of such mental health issues.
Many respondents expressed difficulty in getting their AT devices repaired, citing expenses, unavailability of parts or repair services as the reason. Thus, in case of further lockdown, orthotists for the repair of AT devices must be accessible. Those performing repairs should be provided with essential services passes.
Despite of a larger percentage of this population being educated to graduate level and above, only 23% were employed. The rest survive on financial support from the family. Government subsidies in the form of disability pension were only available to 20.3%. Finally, the provision of work-from-home opportunities should be made a priority in both the public and private sectors to ensure financial stability and independence of the PWD population.
| Conclusion|| |
In conclusion, the PWDs interviewed were fully aware of the dangers of COVID-19 including the risk to life and the need for the lockdown. They were also aware of social distancing, the use of face masks and gloves, as well as the technique of hand washing. Majority of them relied mainly on the family for financial and caregiving support. A very small percentage received government subsidies despite being eligible (example, Telangana's SCI group having been denied Aasara pension). Most respondents reported a decline in their motor skills due to a lack of exercises and formal physiotherapy sessions. Mental health issues remain the main challenge, with a third of the participant pool experiencing issues such as stress, aggression, claustrophobia, anxiety, and depression, among others. Furthermore, 86% of these participants had not received counseling services. However, further larger surveys will be necessary to cover the effects of the lockdown on PWDs and the elderly, including those living in villages and smaller towns.
Finally, an accurate nationwide database of all PWDs and elderly is important and would come in handy in crises such as the present one. This would assist in research and educational activity as well as in providing tele-medicine and tele-rehabilitation through the ever-expanding network of digital India.
We would like to thank Dr. Patanjali Nayar (WHO South East Asia Regional Office), for sharing some of the referenced articles. A special thanks to Menka Lidhoo, for coordinating with the Hyderabad Spinal Cord Injury network, and Cmmdr. Talwar and Ms Hemanjot Kalsi of IHIF for their logistical support.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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