Whose Life Matters? Challenges, Barriers and Impact of Covid‐19 Pandemic on Persons With Disability (PwDs) and Their Care Givers REPORT

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REPORT

Whose Life Matters?

Challenges, Barriers and Impact of Covid‐19 Pandemic on Persons With Disability (PwDs)

and Their Care Givers

Prepared for WHO South‐East Asia Region

August 2020

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Whose Life Matters? Challenges, barriers and impact of COVID-19 pandemic on persons with disability and their care givers – Summary report

SEA-Disability-10

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Printed in India

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Contributors Mathew Varghese

Syamala Gidugu Shirly G Santosh George

Anil Gurtoo, Anupam Prakash, Ritika Sud Albina Sankar

Suranjan Bhattacharjee Arun Sethi

Anil Jain Bipin B Choudhary

Denny John

Dinesh Mohan

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SUMMARY

The Covid 19 Pandemic has affected our lives directly and indirectly. Worldwide 18,467,839 have tested positive and 697,876 died and India has recorded 1,858,689 positives and 39,002 deaths as on August 4^th 2020.1

In an attempt to contain the spread of infection different countries have adopted different strategies from testing and containment, selective lockdown to complete lockdown. India adopted a strategy of total lockdown from 21^st March 2020, without giving any time for preparation. This affected all general and economic activities and all lives are affected significantly by the lockdown. Anecdotal reports revealed that Persons with Disability, some patients with chronic diseases and the impoverished were severely affected by this. This study was done to understand how the lives of these have been affected by doing a countrywide telephonic survey.

We hoped this will help us generate policy recommendations to reduce the suffering of this vulnerable group during this epidemic and future epidemics and mitigate possible long term consequences.We also felt this is an opportunity to generate evidence for policy and action for future epidemics and pandemics.

The study was initially started with five institutions participating to gather data, however, as the study progressed more institutions joined. This was accepted to capture a wider spectrum of conditions and have a wider spread across the country.

The study period got extended for various reasons even as the lockdown continued and also many areas were in the unlocking phase.

The survey finally had ten organisations participating with interviews of a wide spectrum of disabilities across the country. At closure 5,165 persons with disability or their care givers were interviewed. The answers were analysed qualitatively to problems common to all and also segregated to problems unique to each type of disability. Based on analysis of thes issues brought up by the caregivers and the PwDs recommendations have been made.

1 Covid‐19 Coronavirus Pandemic ‐ Coronavirus Cases. https://www.worldometers.info/coronavirus/. Accessed

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PROJECT DETAILS

Main Applicant: Mathew Varghese, MS ([email protected])

Head Orthopaedics Department, St. Stephen’s Hospital, Delhi 110054, India

Contact Details: Email: [email protected] Phone:OFFICE: +91 11 23966024 Mobille: +91 9810420851

Postal Address: St Stephen’s Hospital, Tis Hazari, Delhi, 110054, India

Project Title: Whose life matters? Challenges, Barriers and Impact of Covid 19 Pandemic on Persons With Disability (PwDs)and their care givers.

Team Members

Mathew Varghese, MS, Head Orthopaedics Department, St. Stephen’s Hospital, Tis Hazari, Delhi, 110054. ([email protected])

Syamala Gidugu, Executive Director, AADI , Balbir Saxena Marg, Hauz Khas, New Delhi 110016.

([email protected])

Santosh George, PhD, Director, Cure India International, A3/149, Janakpuri, New Delhi – 110058.

([email protected])

Anil Gurtoo, Director Professor, Head of Department of Medicine, Lady Hardinge Medical College, New Delhi 110001. ([email protected])

Anil Jain, Consultant , HOD, Dr. P.K. Sethi, Department of Physical Medicine &

Rehabilitation SDM Hospital, Jaipur, ([email protected])

Anupam Prakash, Professor, Department of Medicine, , Lady Hardinge Medical College, New Delhi 110001([email protected]))

ArunSethi,OphthalmicDirector: ADEH, Gurgao, Haryana. [email protected] Albina Sankar, Mobility India, Bamgalore Karnataka, India. albina@mobility‐india.org Bipin B Choudhary, The Cradle, Delhi. [email protected]

Suranjan Bhattacharji, CMC Vellore Chittoor campus, Andhra Pradesh. [email protected] Achal Bhagat, Chairperson, AADI, Delhi. [email protected]

Ritika Sud, Professor, Department of Medicine, , Lady Hardinge Medical College, New Delhi 110001.

([email protected])

Shirly G, MTech, Head Department of New Initiatives, National Institute of Speech and Hearing, Kerala, India ([email protected])

Dinesh Mohan, Ph.D.Honorary Professor, Transportation Research & Injury Prevention Programme, Indianstitute of Technology Delhi.([email protected])

Denny John, MBA, MPH,PT Adjunct Associate Professor Amrita Institute of Medical Sciences, Kochi, Kerala.([email protected])

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Challenges, Barriers and Impact of Covid 19 Pandemic on Persons With Disability (PwDs)

and their care givers.

OBJECTIVE

 To assess the Challenges, Barriers and impact of Covid 19 pandemic and related Lockdown on disease/ disability of PwDs.

 To assess the Challenges, Barriers and impact of Covid 19 and related Lockdown on ADLs and other activities of PwDs.

 To assess the Challenges, Barriers and impact of Covid 19 and related Lockdown on Care givers

 To develop recommendations to mitigate the impact of Covid19 and related Lockdown on PwDs

 To observe the impact of Covid 19 pandemic and related lockdown on rehabilitation activities

BACKGROUND

Background / Situation

WHO declared Covid 19 as a Global Pandemc on March 11, 2020. Different countries have been grappling with different stages of the pandemic with some countries like China, Italy, Spain, UK and now USA facing a sudden surge in both the number of cases tested positive and also mortality related to Covid 19. Initial response was Isolation of Covid 19 positives and home quarantine of contacts of persons found positive. Who also has recommended such measures in the face of growing number of cases (1) The first case of Corona virus Covid 19 was reported on 30^th January, 2020 and with the steadily rising number of cases a complete lockdown of India was ordered from 22^nd March, 2020 (2) This has left large populations in an unexpected and unprecedented situation. To the best of our knowledge such a complete lockdown of all surface road, rail and air travel has never been ordered.

The entire population has been forced into home quarantine. But how has it affected the marginalised and persons with chronic disease and Persons with Disability (PwDs). A case‐specific review of the literature has demonstrated the influence of power and privilege on the experience of an epidemic. A review by Kapiriri, L. (3) found that infectious disease outbreaks disproportionately affect the poor, specifically communities with poor physical infrastructure and limited access to quality public health services (3). The duration of the epidemic is also difficult to predict even assuming accurate transmission rate β and the case‐infection ratio ρ (4). Therefor there is uncertainty in the duration of lockdown also.

During the course of the project this fear was borne out to be true and the lockdown was extended again and again until a limited unlocking was announced on 22^nd June 2020.

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An Executive board of WHO recommendation also suggests to promote the inclusion of priority assistive products and inclusive barrier‐free environments within emergency preparedness and response programmes(5). Moreover, we must ensure that our policies are inclusive and that we reach out to those who are disenfranchised.(6)

Soon after the lockdown the impact of the disruption of services was felt immediately by the persons undergoing treatment for rehabilitation of their disability, the care givers and the service providers in the health sector.

The following apprehensions were listed at the beginning of the survey.

Access issues:

1. Patients could not access treatment. Those who had their own transport could access care facilities but the poor could not access. Most could not travel because of disruption of taxi services and public transport facilities. Even where the occasional transport or ambulance was available they could not access them because of lack of money.

2. Especially those availing train services had greater difficulty as all train services were stopped.

Many of them, already operated and admitted could not go back. They were stuck in the hospital even now and many could not even call their relatives to be with them. They could not be discharged as even hotels and restaurants were closed.

3. Could not access medicines and rations

4. Persons needing Assistive products could not access rehab centres and also as supplies of these were affected, this becomes critical as if the lockdown continues the run the risk of recurrence of deformities.

5. Eventhough adequate update was given from the Government regardibg the current status of the pandemic, precautionary measures to be taken, all information regarding lockdown, due to the language barrier, we do not know how much information is grasped by persons who are deaf and hard of hearing. We are yet to find out whether they understood the seriousness of the issue.

Assistive Technology

1. Persons involved in making of these assistive products could not reach the manufacturing facility.

2. Manufacturing facilities were all ordered to be closed as they were considered non‐essential.

3. Battery operated assistive devices went dead for many PwDs, especially those with hearing impairments as shops selling cell/ batteries were closed and no courier deliveries were possible as this was not considered essential.

4. Many persons with multiple disabilities including many using Touchpads and other communication devices could not communicate as no support services (repair services) were available.

Care givers

1. Patients with severe disabilities who were dependent on care givers for ADLs could not get

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2. Parents were isolated from some of these children because of travel restrictions and/ or quarantine

3. Olderparents found it difficult it difficult to give care to adult PwDs. They were afreaid of calling helpers for fear of infection.

Psychological and Emotional issues

1. Many of these PwDs are likely to face Psychological and emotional issues from isolation and or confinement from the lockdown. This could be much more than normal population as many of the with Autism and Cerebral palsy may not understand the reasons for the lockdown.

2. Absence of the regular care givers and / or environment where they were going could lead to emotional and psychological stress in many.

3. Uncertainity of when normalcy will return added to the stress.

Chronic Illnesses like Thalassemia and Haemophilia

1. Many with Chronic illnesses would face difficulties because of closure of these services in hospitals.

2. Thalassemic and Haemophilia patients would face additional problems because of closure of blood donation camps. Gatherings are prohibited in Lockdown

Direct Impact from Corona virus

1. In the event of a caregiver/ Guardian/ Parent becoming these PwDs are more vulnerable because Physical/ Social distancing is impossible as they are dependent on them for ADLs and support for other activities.

2. They will be more vulnerable to get the infection from poor immunity in many of them.

3. PwDs will have difficulties in hand washing and wearing of masks and other PPEs because of their disability.

4. Fear and concerns were related to health of guardians

Economic Impact

1. Most PwDs are directly affected as most of them belong to impoverished communities.

2. Many PwDs on daily wages and / or self ‐ employed PWDS lost their daily income, thus resulting in productivity losses.

3. Many of them without any savings or social security face difficulty in survival because they face difficulty in accessing food for survival.

4. Absence of financial support led to increasing debt

Possible challenges faced by PwDs

1. No work or permission to go out, there is acute shortage of resources.

2. Assistive device services including hearing aid, handset, batteries for the aids etc.

3. Loneliness and helplessness with no communication and support from peer group.

4. Shortage of ration for daily food.

5. Fear of missing wages during the lockdown 6. Fear of losing job

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8. Lack of information on COVID 19 in accessible formats

9. Lack of trained human resource to support people with disabilities infected by COVID 10. Lack of care givers as health care assistants to support people with disabilities

11. Lack of financial schemes to enable people with disabilities and families to access health and other services

12. Lack of emergency health care for non COVID related issues

13. Lack of support networks to allay fears and provide psychosocial support 14. Lack of financial and other support in adverse situations of losing a job;

15. Lack of systems to address the complex situation of lockdown on relationships, financial situations, mental health and well being.

Challenges faced by Organisation working with PWDS

1. Impact on care provided to children with cerebral palsy

2. Discontinuation of treatment given to children born with clubfoot 3. Impact on manufacturing assistive devices by PWDS

At the end of the survey we hoped to have clear answers to the extent to which each of these apprehensions were actually experienced by the PwDs and their caregivers. This reports details all the problems faced by the persons interviewed.

While there were few reports on the impact of epidemics on the marginalised a quick review of Pub‐

med found no articles on the influence of epidemics on disability and Chronic diseases.

Early on in the lockdown itself, the epidemic itself combined with complete disruption and lockdown of all public activity had pushed the lives of the disabled to great difficulties. The situation as it evolved became grim affecting millions migrant workers requiring emergency intervention. The survey helped understand the extent to which PwDs and their caretakers were excluded from the interventions.

Support expected varied from assistive device maintenance, dry ration in the context of lockdown and financial support, counselling and support group building. The survey reemphaes the need for emergency intervention at the national level not only to help PwDs to sustain during the lockdown but also enable them to resume normal life and work without any further difficulties.

PURPOSE OF THE STUDY

This study proposed to understand the magnitude and nature of the problems faced by the PwDs in terms of challenges barriers and economic impact, and based on the findings recommend mitigation strategies to help PwDs. Also as this kind of a lockdown is unique not to just India but to many nations around the world a study like this was to give us a better understanding of issues relating to the lives of PwDs in such epidemics. Such an opportunity may not come (hopefully) for another century.

A mixed method approach was utilised. Along with a questionnaire survey of PwDs and to engage with PwDs in over 220 Districts in India, in‐depth interviews were also undertaken.

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The goal was to understand strategies to support and sustain PwDs during the lockdown and resume productive life post COVID 19 crisis.

This was intended to be a qualitative study and not a quantitative study.

METHOD

As physical meeting was not possible in view of the lockdown, all correspondence was planned to be telephonic interviews. In the beginning only six organisations were to conduct the survey. However, to increase the nationwide spread and get a wider spectrum of disabled in the survey appeals were made to other NGOs in the diasability field. Cosequently, four more NGOs Joined the survey.

All experts had several Zoom meetings to plan the strategy for the survey, plan the questionnaires, approve the consent form and for ethics clearance.

IRB Approval

The proposal was sent for IRB approval to the St Stephen’s Hospital Ethics committee approval. The committee reviewed the proposal and after discussion formal approval was given.

Development of a questionnaire

The first task was to develop a questionnaire. Conference calls/ Emails were circulated to all participating organisations to invite suggestions for the survey questionnaire and In Depth Interview (IDI). Each participating group generated questions appropriate to their expertise. These were then collated and circulated among all the members. Several existing survey questionnaires were reviewed collected and reviewed again and final questions included for the survey.

The review was done to understand ease of questionng, include disability perspectives, assessment of difficulty in understanding and any other relevant issues. . It was also decided to use the standard Short Fom SF‐12 Survey Form ( Appendix 1). After several meetings a consensus questionnaire form was evolved (Appendix 2).

Literature review

A detailed literature survey was also be done as part of the study. This was to help understand issues regarding different aspects available in peer reviewed literature.

Survey questionnaire trial and IDI training and translation of consent form

Once the literature review and a consensus on the survey questionnaire and IDI was evolved a trial run and training of the research assistants/ Counsellors to fill the forms was done. Clarifications regarding survey questions were made after discussions and trial runs. The consent form was translated into Hindi and Malayalam. For the deaf adults, it was decided to create an online Indian

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were identified by National Institute of Speech & Hearing (NISH) for this. Responses were collected directly from the deaf adults.

Telephonic interview and IDI Survey

The survey was done using telephone numbers to contact all the PwDs willing to participate in the survey. Each of the institutions participating with expertise in different areas had contact details of persons with different types of disabilities. Interviews were conducted of PwDs and their care givers about their experience during lockdown and how their life was affected.

The type of disabilities and their care givers:

1. Children with clubfoot and other syndromes affecting lower limbs 2. Cerebral palsy

3. Autism and intellectual challenges.

4. Persons with Mental illness 5. Patients of Thalassemia

6. Persons who are deaf and hard of hearing 7. Persons with visual impairment

8. Persons with Hemiplegia and Paraplegia 9. Persons with Paralytic Poliomyelitis 10. Amputees

11. Polio and other Admitted/OPD Patients with Disabilities in St Stephen’s Hospital

As the lockdown was officially extended twice it was possible to extend the survey beyond the planned schedule. Even as analysis was going on several parts of the country were still underlockdown while others were in various stages of unlocking.

Early evaluation revealed that most common problem was economic and access to food. The survey was extended to Karnataka and Andhra Pradesh later and therefore the survey there was conducted lastly.

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RESULTS

Data Analysis

All survey questionnaires were compiled on an Excel spreadsheet. Data was then segregated based on types of disabilities. Analysis of the combined and segregated data were then done to understand the nature and types of problems faced by PwDs. Table‐1 summarises the results of all the types of disabilities and their gender distribution. A total of 5,165 persons and their care givers were interviewed based on the questionnaire. A diverse range of disabilities were reached in the survey telephonically and in case of deaf and hard of hearing, video interview using sign language was done.

A large proportion of cases were club foot cases as the NGO CIIT has a pan India presence and a large data base of children with birth diffects of the feet. Arunodaya Eye Hospital gathered information on only visually impaired. The National Institute for Speech and Hearing gathered information on deaf and hard of hearing. The NGO AADI gathered information on Cerebral Palsy, Intellectually impaired and autistic persons. AADI also collected information on persons with mental illness. The NGO Mobility India gathered information on Cerebral Palsy and Amputee persons. SDM Hospital, Jaipur and St Stephen’s Hospital, Delhi gathered information on Polio Persons, admitted and out patients. The two medical colleges that were involved, Lady Hardinge Medical College, gathered information on Thallesemicwhile CMC Vellore, Chittoor campus, gathered information on Heamiplegics, paraplegics and amputees.

Table 1 summarises the number of each type of disability in the survey.

The largest group interviewed was clubfoot and related birth defects with 3828 persons, followed by Cerebral Palsy 687 and Deaf and hard of hearing 329 cases. All the other diasbilty groups were 20 to 50 cases. Looking at the responses regarding disability certificates, 39 % of the persons other than clubfoot children did not have a disability certificate.

Overall most persons were worried about loss of income/ loss of job and problems about getting food.

While many denied psychological changes a majority of them were anxious, worried and sad. Many

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were upset at stoppage of treatment/ follow up and rehabilitation services. Majority had disturbances in sleep. As family members were the caregivers many had problems leaving the PwD and standing in long queues. Overall access to Assistive products was a problem including their repairs and procuring cells for electrical assistive devices. Lack of vehicles was also an important issue in accessing services as even taxie services including 3 wheeler taxies, E Rikshaws and cycle rikshaws were not available. A common request was home delivery of food and medicines.Specifically in relation to Covid the messages in TV and Radio were not disabled friendly. This was true even for the social media. Even the messages for mask wearing and hand washing did not clarify how the PwDs dependent on ADLs are to do that. Physical distancing was not possible for the dependent PwDs and their families lived in fear of getting the disease. Single parent could not even seek the help of caregiving relatives nor could they go out for buying essential or for any other work.

Even where food distribution was done for the impoverished they were at a distance from their residence and the PwDs could not access them easily.

The pooled data were segregated into different types of disabilities. Each category was then analysed separately to understand issues unique to each disability and also problems common to all. Appendix 3, gives the detailed and segregated responses analysed from an excel spread sheet of the total data.

Table 1. Summary of all the types of Disabilities surveyed: and their care givers who participated.

Condition/ Disability Total

Survey Male Female

Cerebral Palsy 687 457 230

Clubfoot 3828 2495 1333

Thalassemia 73 34 41

Autism 29 20 9

Intellectual Disability 28 22 6

Visual Challenge 42 23 14*

Hard of Hearing 252 140 111*

Deaf Adults 77 43 34

Knee Amputation, Amputation, Trans Radial Amputation

12 6 6

Hemiplegia, CVA, Stroke 21 12 9

Polio 19 11 8

Mental Illness 31 20 11

Paraplegia, MMC, Spinal Cord Injury 14 2 12

Miscellaneous (Critical Neuropathy, SLE, Head Injury etc.)

51 35 16

Total 5,165

*Totals may not add up because of missing data

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Table 2 gives the age and gender distribution of the cases. The largest group were the children with club foot and related birth defects. 65% of the cases were males.

Table 3. Education and Knowledge of Pandemic

Highest Education Knowledge of COVID Pandemic

Yes Partial

Information

No No Response

No Education 326 56 14 3

Primary 931 162 12 6

Secondary 960 82 26 9

High School 1,019 62 46 10

Special School 2 3 ‐ ‐

Under Graduate 787 32 31 2

Post Graduate 1 ‐ ‐ ‐

Others 66 14 9 1

Unknown 217 66 5 128

Table 3 summarises the Educational status of patients caregivers and their level of information on the pandemic. Most of them were aware of the pandemic but about 12% were either not aware or had poor understanding of what is happening I the pandemic. Over all there was reasonably good awareness.

Most of them got their information from friends and family, or from television. Many received their information from multiple sources but over all only 10% of persons received

their information from social media (Table 4).

Very few of the persons from Aarogya Setu application.

Further details of the sources of information are given in Table 5. Table 6 shopws the gender distribution, , Disability Certificate and house ownership data.

Table 7 gives the summary psychological symptoms of

PwDs. The table clearly shows the extent of persons that had mood changes, anxiety, irritation and sleep disturbances. The worst were the Hemiplegics(95%), paraplegics(86%) and the amputees (100%) while the best were deaf and hard of hearing.

Table 2. Age and Gender Distribution of PWD

Age of PWD Gender

Female Male Others

0 ‐ 18 Years 1,262 2,521 3

18 ‐ 30 Years 335 327 0

30 ‐ 60 Years 179 403 1

60+ Years 14 25 0

Unknown 10 9 0

Table 4. Source of Information about Pandemic

Category Count

Friends and Family 5,016

Television 3,613

Social Media 998

Caregiver 223

Print and Radio media 15

Arogya Settu App 4

Anganwadi & Health Care Workers

2

Others 3

No Response 144

Did not Specify 72

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Table 5. Source of Information about Pandemic

Category Count Percent

F&F + TV 3454 67.89%

F&F + SM 874 17.18%

F&F 226 4.44%

F&F + CG 150 2.95%

NR 144 2.83%

F&F + TV + SM 73 1.43%

DNS 72 1.42%

F&F + TV + SM + CG 38 0.75% Explanation of Abbreviations

F&F + TV + CG 34 0.67% Abbreviation Category

F&F + TV + SM + P&R 6 0.12% F&F Friends and Family

F&F + TV + P&R 4 0.08% TV Television

F&F + SM + App 3 0.06% SM Social Media

F&F + P&R 2 0.04% CG Caregiver

F&F + HCW 1 0.02% P&R Print and Radio media

F&F + SM + Oth 1 0.02% App Arogya Settu App

F&F + SM + P&R 1 0.02% HCW Anganwadi & Health Care Workers

F&F + SM + CG + P&R 1 0.02% Oth Others

F&F + TV + Oth 1 0.02% NR No Response

F&F + TV + HCW 1 0.02% DNS Did not Specify

F&F + TV + App 1 0.02%

F&F + TV + SM + P&R + Oth 1 0.02%

Table 6 : Showing Gender distribution, , Disability Certificate

Page 32 - limitations faced by PwDs and challenges faced by NGOs is appearing on page 32 after references. It could be moved with overall limitations and challenges.

Type of Disability Total Disability Certificate

Male Female

Clubfoot 3828 66% 65% 34.8%

CP 687 55% 66% 33%

Autism 29 76% 68% 32%

Intellectually Impaired 28 78% 78% 22%

Mental Illness 31 48% 64% 36%

Thalassemia 72 66% 50% 50%

Deaf 77 92% 58% 42%

Hard of Hearing 251 91% 56% 45%

Visual Impairment 37 76% 62% 38%

Hemiplegia 21 71% 57% 43%

Paraplegia 14 64% 86% 14%

Amputations 9 100% 44% 56%

Polio/ Admitted persons 37 68% 62% 38%

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Type of Disability Total Mood Changes

Sad Anxious/

worried

Irritated/

restless

Sleep Disturbances

Clubfoot 3828 37% 30% 18% 25% 50%

CP 687 34% 34% 39% 29% 37%

Autism 29 48% 49% 36% 49% 59%

Intellectually Impaired 28 43% 32% 25% 32% 18%

Mental Illness 31 68% 48% 48% 61% 35%

Thalassemia 72 100% 64% 30% 43% 49%

Deaf 77 21% 21% 8% 6% 26%

Hard of Hearing 251 24% 22% 11% 15% 17%

Visual Impairment 37 3% 51% 63% 60% 46%

Hemiplegia 21 76% 76% 81% 86% 95%

Paraplegia 14 93% 93% 79% 79% 86%

Amputations 9 89% 57% 64% 64% 100%

Polio/ Admitted persons 37 32% 70% 51% 22% 49%

The questionnaire also had open ended questions like what was your worst experience. While many commented Many chose not to speak on this.

DISCUSSION

This study was planned to look at the impact of Covid 19 on lives of persons with disabilities and their caregivers. The number of PwDs in India is large and a study revealed that the proportion of the disabled population in India was 2.10% in 2001, which increased to 2.21% in 2011 (7). This means there are over 29 million persosn with disability in India. That is a large number and therefore there is a need for studies like this understand how they are affected in the pandemic. In the normal non Pandemic situation also the PwDs face significant challenges to access health care. People with disability (PWD) face significant challenges to accessing health care in the region. Studies show that adults with disability reported a four times higher incidence of a serious health problem in a year’s recall period. Evidence shows a significantly higher rate (17.8%) of hospitalization among PWD compared to others (5%) (8). A wide spectrum of PwDs were interviewed while there were many issues common to all the persons. The development of the questionnaire itself went though several iterations, yet many of the insights came from the free discussions with the caregivers and the PwDs. We feel that in such surveys there should be the freedom to have open ended and contextual corollary questions in addition to the standard questions being answered. This we believe is useful such qualitative collection of information to understand challenges and barriers.

The common general issues included being confined to a small space and Loss of Job/ Loss of income..

Food was the next issue with the disabled. Partly because of finances but partly also because of access

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and behaviour issues were commonto those with autism and intellectual impairment. Closure of healthcare facilities for rehabilitation disrupted the normal rehabilitation of the PwDs. Procuring assistive products and their maintenance/ repairs were problems across the physical disability sector.

Caregivers of the disabled also had significant problems. Especially those PwDs are dependent for ADLs the family members needed to go out to arrange for services and other essentials. But the lockdown prevented their movement affecting the care of the disabled. Decisions regarding the continuity of rehabilitation services need to consider the implications for different patient groups and for health service delivery more broadly, as well as infection risk to PwDs and rehabilitation professionals (9).

The problems common to all groups related to the impact of lockdown on families and the economic consequences of loss of livelihood. In some group upto 90% of the patient had loss of Job and problems of access to food. Some families where the disabled were benefiting from a disability pension found themselves as having only the pension as their only source of income. Loss of job of the spouse led to the PwD affected from deprivation.

Delivery of food at home of the PwDs and financial support with a disability pension was a common felt need.

Lack of income and lack of jobs are crucial to the crisis experienced by the PwDs. As it is employability of PwDs is less than the rest of the employable persons of similar age. Persons with disability have different employment experiences depending on their disability type, literacy, gender, and on whether they live in rural or urban areas. Even before the pandemic the PwDs face barriers as reported in literature. There is a need to better understand the barriers to PwD employment, and how those barriers may vary by disability type across different districts in India(10). In todays context of social networking the growing use of online self‐help and mutual aid groups have been explored in literature for content of an online self‐help group for issues related to disability. (11). This could be explored further in creating self help enterpreneurship for PwDs.

There is a need to look for other income generating activities for PwDs. Some of the PwDs interviewed even mentioned the need for a scheme for employment Guarantee along the lines of Mahatma Gandhi Rural Employment Guarantee Scheme(MNREG). While MNREG is only for physical labour work, by the nature of the scheme itself the PwDs are excluded. This should be developed further this with a non physical labour based scheme for the PwDs.

Lack of transportation and taxi services led to severe access issues not just to access health care and rehabilitative services but alsoto access essential supplies and food.

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While general awareness of the pandemic was there on closer questioning most of them had doubts on specicifics and many suggested the need for a 24X7 helpline. While 68% of the interviewed learnt about Covid 19 from friends and family and TV. Ownership of smartphones posed to be a challenge as many PwDs did not have smartphones. Only 18% othose interviewed accessed information through social media and less than 15 used the official freely downloadable Arogyasetu Application for keeping track infected persons around them. We feel that merely having a free downloadable application does not lead to a large number of person using it. On reason could be that not all the phones with the PwDs had a smartphone which is essential for accessing social media. We realised this error only later on in the survey that while there was a question on ownership of a phone we did not have a question whether the phone was a smartphone.

Confinement in small spaces for many days in a row without the possibility of a break out in the open must be the reason for so many psychological problems. Uncertainity over future and loss of a daily routine was a source of stress for PwDs. While many of them denied any psychological issues large number of them had mood changes ranging from over 30%to even 100% of the persons surveyed. A large number were sad, worried and anxious while many revealed they had sleep disturbances. The only group which were better in psychological state of mind were the deaf and hard of hearing. They all belonged to Kerala state linked to a national institute. They all had acess to counsellors so they were better than all the others. This highlights the need to provide counselling services during such major lockdown. On being specifically asked about what should be done to reduce problems one important suggestion was the creation of a 24X7 helpine for disabled. This should also give access to Psychologist and Psychiatrist for counselling services.

Disruption in rehabilitative services in one form or the other affected the treatment, follow up and rehabilitation of services. Long term implications of ths will need to be evaluated.

Overall non availability of assistive products their repairs and the cells running the electrical devices caused inconvenience to many. Even where these services were open (St Stephen’s Hospital‐ see Appendix 4 for story of Gufran) supply and availability of parts and components were a problem.

Insurance cover is considered by many as an option to help PwDs in such times. Until recently insurance cover was not there for PwDs. The Swavlamban Health Insurance Scheme was the first government‐subsidized health insurance for PwDs in India. It has been stopped and reasons were not made public. Currently, mental retardation, cerebral palsy, autism, and multiple disabilities are covered under the Niramaya Health Insurance Scheme and mental illness under the Ayushman Bharat:

PM‐JAY. (12). The Niramaya scheme covers expenses upto Rs100,000/ for persons with disability (http://thenationaltrust.gov.in/content/scheme/niramaya.php). The amount is unfortunately too

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including congenital disability, Ongoing Therapies to reduce impact of disability and disability related complications, Alternative Medicine. We feel provision of total care in well equipped public hospitals would be optimal.

ANALYSIS OF SEGREGATED DATA

Each of the category of the disabled were segregated and the responses as analysed using an Excel spreadsheet are given in detail in Appendix 3. The responses category wise are discussed below:

Children with clubfoot and other syndromes affecting lower limbs

This was the largest group of persons spread across the country in every state in India. 3,828 caregivers of PwDs responded and agreed to be part of the study. Ninety three percent of the respondents not having disability certificates appears alarming but that is understable considering that all these are PwDs with treatable conditions. But many of these syndromic PwDs will need it for entitlements for privileges. 37% of parents revealed that they had mood changes, 30% were sad by the events relating to Covid 19. 50% complained of problems related to sleep. Clubfoot being a treatable condition the parents were worried about permanent disability especially as all advocacy for clubfoot treatment highlights the need for early treatment to prevent permanent disability. Stoppage of treatment was a contradction to this. 40% of cases had their treatment discontinued and 36% could not do follow up visits.

This is significant as in these children delay in treatment and failure in follow up could lead to deterioration in disability status.

Being the largest group spread across the country, ther comments gave a feel of the nationwide problems faced by the PwDs and their care givers. While we had planned to segregate respondents in rural and urban categories while preparing the questionnaire, it was difficult for us to identify whether an address was rural or urban. This was an error of judgement in preaparation of the form.

Cerebral palsy

A total of 687 Cerebral palsy patents and their care givers were interviewed. Bot Urban and Rural persons were questioned. 45% of the respondents did not have a disability certificate. This is important as entitlement for Government support schemes depend on producing a disability certificate. 25% of them had never attended any school. Despite all the public education campaigns on Covid 22% of them did not know where to go in case of symptoms suggestive of Covid.

While denying any Psychological symptoms 34% admitted being sad, and 39% were worried because of discontinuation of rehabilitative services and fear of deterioration.

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\Most of the Cerebral Palsy persons lived with their family so the family members could take care of them personaly. But 20 % of the care givers had no access to masks or sanitisers. One mother went to the extent of putting an alarm to remind her every 20 minutes to sanitise hands of her child who could not use his hands because of spasticity. That was the message being aired on the radio, no one told her that if the child is not touching anything, not shaking hand with any body there is no need for such a ritual.

635 of them were worried about access to emergency medical care as public hospitals were converted to Covid Only hospitals. 68% of them had no access to any rehabilitative services.

Access to regular physiotherapy and occupational therapy was a complaint of most along with lack of access to assistive aids and their repairs.

The lockdown closed all non essential services, however, for persons with disability stoppage of their regular services accentuates their problems an as shown most end up with psychological issues in addition to the Physical problems that are not addressed.

Almost one in eight children of the age 2–9 years have at least one of the nine NDDs; this is a conservative estimate, and actual burden might be higher due to limitations of the study.(13).

Therefore number of persons with disabilities from Neurodevelopment disorders are large with this group therefore policy makers should considering these services for persons with disability also as essential services and keep them open.

Autism

29 autistic persons’s caregivers were interviewed. Detailed responses from the caregivers clearly showed that the caregivers of these persons had a tough time as the autistic persons could not understand why they are being confined, why the daily routine is suddenly stopped. 52% of caregivers had difficulties in handling the child during the period. Many of them said it was very stressful to take care of the child whole day. Autistic persons would become restless, aggressive and start screaming and shouting. Some autistic persons would start injuring themselves and become violent. Dealing with this was, to many, the worst experience during the lockdown. Even inability to get toys repaired as shops were closed would cause these autistic persons to become agitated.

Those parents that had helpers also faced difficulties as helpers could not come and the parents a tough time caring for the demands of these autistic persons.

Intellectual challenges

28 cases of intellectual impairment were interviewed. 46% were not fully aware of Covid 19. Many of them were from the rural background and they wanted Financial support and support for food. 42%

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had been stopped. While loss of livelihood was a major issueeven those that had access to savings could not access ATMs, Being in the rural area they were not being serviced.

Many of the families had several interpersonal issues. This was revealed only in the detailed questions beyond the listed questions. We feel that in surveys like these there should be a scope for such open ended free discussion.

Persons with Mental illness

31 persons with mental illness were interviewed. Interestingly direct questioning 71% had no difficulty in enjoying, or no anxiety(61%) or having any negative thoughts(87%) and they they denied any issues in happiness the in depth interview, as before, revealed many problems. 48% were still worried, 52%

restless, and 35% had sleep disturbances. This was true for other disabilities too. So in surveys like this such free range questions do seem to give a clearer picture and understanding psychological issues.

In addition, several interpersonal issues surfaced because of lack of privacy. This was more acute in the persons with Mental illness group revealed only on detailed questioning.

52% of them did not have any disability certificate. This is also an issue as entitlements for government social benefits depend on the production of such a certificate. In the field of disability studies have revealed there is a relatively long gap between the onset of illness and disability certification. In spite of regulatory threshold of 2 years, patients take a long time before seeking disability certification. This would mean a delay in disability benefits as well for these individuals.(14) Stigma, poor knowledge about the Indian Disability Evaluation and Assessment Scale (IDEAS), fear of misuse of certificates, discomfort to approach government hospitals, time constraints, rigid negative thinking about legal issues, denial of disability have been specified as some of reasons for underutilization of disability certification.(15) Despite the advantages the disability certificate affords, the Persons with disability Act also presents a challenge for the disabled in another area of their health and rights—namely, the protection of their privacy. The certificate itself needs to display a photograph (certified by due authority), as well as the name and address of the individual, which can increase the risk of confidentiality breach should the certificate be misplaced or stolen, or merely viewed by unauthorised persons. (16) Further, the certificate details not only the diagnosis, but also the duration of illness and degree of disability These are systemic issues that need to be addressed for all persons with disability but especially for those with mental illness.

Persons of Thalassemia

Of the 72 thalassemic persons 33% of persons did not have disability certificate, all were aware of corona virus infection. 100% admitted change in mood 64% were sad, 49% had sleep disturbances.

All were having some form of psychological issue.

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The biggest problem they all faced was non availability of blood. Patient after patient complained of this. As colleges and offices were closed no blood donation camps were held. So blood banks were acutely short of blood and in the beginning most persons could not get blood transfusion. An additional problem they faced was th difficulty in finding transport to reach the hospital. Their suggestions essentially was to arrange blood somehow or the other. Ultimately many weeks after the lockdown Whatsapp groups were formed by doctors and healthcare workers which helped locate donors among the healthcare workers and their relatives which then helped ease the problem.

The study clearly revealed this issue which should be anticipated and arrangements must be made to provide for this. Hospitals could maintain databases of both persons and would be donors to be activated during such crisis.

Deaf and hard of hearing persons Deaf

77 deaf persons were interviewed. While the survey was to be conducted telephonically the team soon felt the impracticality of it. A sign language video questionnaire had to be developed along with the consent form. 92% of these persons had a disability certificate. This particular state where the hearing and speech centre is located has one of the best health statistics. So it is easy to understand the reach of health services and the availability of disability certificates to a majority of the deaf. Also, being a single specialty disability ( in a majority) of cases it is easy to document by audiogram and quantify and issue a certificate.

60% knew where to go in case of any problem while despite the literacy rate of almost 85% among the deaf 40% did not know where to go in case of an emergency related to Covid 19.

On following up questions it turned out that radio was not accessible to them. The TV channels gave no subtitles nor was there any Picture‐in‐picture sign language messaging. So none of the news or official advertisement ampaigns messges reached them. Locked up at home most entertainment channels do not have subtitles so leisure time was also difficult for them.

21% felt sad, but 56% admitted they were having negative thoughts on the pandemic. Overall, however, the psychological issues were much less in this group (only 8% were anxious and only 6%

were worried).

Wearing of mask was a special problem for the deaf. Many of the deaf managed with lip reading. 29%

complained about inability to communicate because of masks. One group heard of a transparent mask from Indonesia and were very excited about it as it helped them lip read. Appendix 5 gives the picture of a transparent mask, made by an Indonesian couple that the deaf and of hearing eagerly adopted.

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The other problem was they could not participate in online classes, and those working could not work from hom s they could not attend the online meetings. Also issues on network and bandwidth for communicating when working from home.

They as a group were keen to have subtitles and sign language for al announcements on TV.

So all the hype on Online telemedicine and online classes will be lost on this category unless special efforts are made to include them in the group.

Hard of Hearing

251 hard of hearing persons were also interviewed. They also had similar concerns as the Deaf adults.

Less number with psychological problems than the other groups. Only 11% were anxious, 12% were worried and15 % were restless. Possibly because NISH has a good networking system. They also had same problem of communication with the masks and the lack of sign language and subtitles in all official communictaions regarding covid19. Schools were having webinar classes and they could not participate.

Many complained about hearing aid repairs and availability of batteries for hearing aids.

On personal communication with professionals in Switzerland and UK we learnt that these facilities including shops for batteries and smartphones were open there despite the lockdown.

Persons with visual impairment

37 cases of visual impairment were evaluated. They were all well aware of the Covid epidemic and the precautions. 76% of them did not have a disability certificate. They wanted home delivery of medicines, and an emergency helpline in case of emergency.

51% were sad, 60% irritated and 63% were worried. 46% had sleep disturbance and 67% were restless.

Overall psychological issues dominated.

48% did not have access to optical aid they needed. 51% needed replacements for their optical aid but could not get it. Suddenness of the lockdown and lack of food for children were some of their worst experiences. Because of aerosol fear no eye services were available causing problems especially for senior citizens and for conditions like Glaucoma, Age Related Macular Degeneration and other treatable causes of blindness. Even common drugs and low vision aids were difficult to get.

Persons with Hemiplegia and Paraplegia

21 hemiplegics were interviewed. Their main complaint was lack of any income (71%). But more significantly 95% of them wanted support for food. This was because in addition to lack of any income access to stores delivering food was a problem because of lockdown.

Whose Life Matters? Challenges, Barriers and Impact of Covid‐19 Pandemic on Persons With Disability (PwDs) and Their Care Givers REPORT

REPORT