Whose life matters? 1 Whose Life Matters? Challenges, Barriers and Impact of Covid‐19 Pandemic on Persons With Disability (PwDs) and Their Care Givers Summary of the Report of an APW awarded by WHO, South‐East Asia Region September 2020 Whose life matters? 2 Whose Life Matters? Challenges, barriers and impact of COVID-19 pandemic on persons with disability and their care givers SEA-Disability-11 © World Health Organization 2020 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. Whose Life Matters? Challenges, barriers and impact of COVID-19 pandemic on persons with disability and their care givers. New Delhi: World Health Organization, Regional Office for South-East Asia; 2020. Licence: CC BY-NC-SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http://apps.who.int/iris. Sales, rights and licensing. 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Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. Printed in India Whose life matters? 3 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 Whose life matters? 4 BACKGROUND The Covid 19 Pandemic has affected our lives directly and indirectly. Worldwide 32.8 million have tested positive and 9,94,883 died and India has recorded 5,915,753 positives and 93,461 deaths as on September 26th, 2020 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 21st March 2020. The pandemic and the associated lockdowns affected all general and economic activities and all lives were affected significantly by the lockdown. 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 populations has 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 and future epidemics or emergencies. The survey 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. OBJECTIVE To assess the Challenges, Barriers and impact of Covid 19 pandemic and related Lockdown on disease / disability of PwDs, their rehabilitation and access to assistive technologies; and on their Care givers; and to develop recommendations to improve their situation. METHOD This survey was conducted telephonically using contact numbers with the participating organisations. 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. Whose life matters? 5 Development of a questionnaire The first task was to develop a questionnaire. Several existing survey questionnaires were reviewed collected and reviewed again and finally after several meetings a consensus questionnaire form was evolved. 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. Consent form and translation The consent form first made inn English was translated into Hindi and Malayalam. For the deaf adults, it was decided to create an online Indian Sign Language (ISL) video questionnaire using Google form. A deaf signer and an ISL content checker 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. Data Analysis A total of 5,165 responses from persons and their care givers were received based on the questionnaire. 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. Table 1 summarises the number of each type of disability in the survey. Whose life matters? 6 (Note: Table 2 has been omitted from this summary report) 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. Table 3 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 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 l Whose life matters? 7 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. 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. Table 5 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 5. Summary of psychological symptoms 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. 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 Whose life matters? 8 DISCUSSION This study was planned to look at the impact of Covid 19 on lives of persons with disabilities and their caregivers. It is estimated there are over 29 million persons with disability in India. In the normal non Pandemic situation also the PwDs face significant challenges to access health care. 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 also. 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 issues. Disruption of familiar routine was one of the issues faced by the person with disability. Safety and behaviour issues were common to 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. 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. 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. (1). 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. Whose life matters? 9 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. 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(0.002%) 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. 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 hospital care, Corrective Surgeries for existing Disability including congenital disability, Ongoing Therapies to reduce impact of disability and disability related complications, Alternative Medicine all were unavailable. We feel provision of total care in well equipped public hospitals would be optimal. 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 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. Whose life matters? 10 Focus on Caregivers(CG) CG is defined as “a person who lives with the patient and is most closely involved in taking care of him/her at home.”(2). In this study we used the term caregiver in a more general sense including outside home, paid for support. However, after survey we realised all persons functioning as caregivers were family members. A majority of persons interviewed in this survey was the group of caregivers. So the issues of loss of jobs, problems in getting food have actually been reported by the caregivers. Caring for a person dependent on ADL is a full time job in itself, in addition the caregiver has to take care of himself/herself. Many of the caregivers actually broke down during the interview highlighting the level of stress they are going through. There is therefore a need to look at this group more empathetically and systemic corrective policy measures should be put in place not just during these pandemic times but also non Covid times. Economists could estimate a value to the services provided by them and this should be added to the social benefit for the family. CONCLUSIONS Covid 19 pandemic has impacted all populations where the Corona virus infection spread. It is quite evident that the virus has impacted lives of people not only in terms of mortality and morbidity but also socially, economically and politically. This survey was done to understand specifically how PwDs have been affected by the pandemic. The survey helps to flag several basic issues of survival and emotional stress and emphasises the need to anticipate these and provide services to minimise them. The recommendations are based on the problems listed by PwDs and their caregivers. RECOMMENDATIONS WHO guidelines clearly state that ‘Actions need to be taken to ensure that people with disability can always access the health‐care services, water and sanitation services and public health information they require, including during the COVID‐19 outbreak.’(WHO/2019nCoV/Disability/2020.1) For policy makers Covid Specific recommendations. A total lockdown has never been done anywhere for any epidemic. The lockdown for Covid 19 pandemic affected the lives of entire populations adversely. The PwDs as a group are vulnerable because of physical, intellectual and psychological limitations. The survey and the detailed questionnaire and interaction with a wide spectrum of PwDs across the country has helped us formulate the following recommendations wherever lockdowns are done for any epidemic or pandemic: 1. Ensure all messages in all regional languages, it should also target specific needs of PwDs: Whose life matters? 11 a. All media campaigns must have sign language component for deaf and hard of hearing. b. All Television messages must have subtitles. c. For the intellectually impaired there should be slow speed messages. d. Create disability specific messages on mask, hand washing, distancing and care by caregivers. e. Clear messages for caregivers of PWDs dependent on ADLs. 2. Promote innovative solutions like transparent masks for the hard of hearing and deaf for lip reading. 3. PWD Special isolation units allowing caregivers to accompany and stay with the PwDs needed to be created 4. Allow Covid tested caregivers from outside home for families with PWDs dependent on caregivers. 5. 24x7 helplines should be created to help caregivers and PwDs for all queries 6. Allow those with Autism, Intellectual Impairment and mental illness special exemption for open space activities. 7. Create training modules for caregivers for safety during corona care and prevention. General Recommendations 1. Create social support systems as part of Community based programmes or through voluntary organisations to help PwDs and their families. 2. Caregivers of PWDS also need to be recognised as a vulnerable group. Support systems should be created for them. 3. Financial support should be provided for all categories to tide over the period of loss of jobs, salary cuts. 4. Ensure some Employment guarantee of some form for all adult PWDs who are not dependent on caregivers to at least earn some subsistence money. For the poor unemployed in India there is a scheme called MNREG (Mahatma Gandhi National rural Employment Guarantee Scheme). However, one major drawback of the scheme is that the scheme allows only physical labour, which in most cases of PwDs is not a possibility. PwDs should therefore have a non‐ physical labour based employment guarantee scheme. 5. Food and/or dry rations should be provided at the door step of PwDs. 6. All components of health care should continue to be available for PWDs. Healthcare be viewed as a continuum from primary care, emergency care, in‐patient care including rehabilitation. 7. Recognise Rehabilitation services are essential services for PwDs. Rehabilitation services were closed in all public hospitals. 8. Transport vehicles should be made available for ease of access to hospitals. Whose life matters? 12 9. Designate Taxies for patient care so that they are widely available for all PWDs. 10. Create easy access for Social and economic benefits announced by the government. 11. Subsidise smartphones for families of all PWDs to create a lifeline for communication. 12. Create a team of cyberhelp volunteers in every community. This facility should be in Urban and Rural Communities wit a trained person from within the community. They could work with the Accredited Social Health Volunteers and also help capture health data collection. 13. Provide free broad band access to PWDs and their caregivers. Many do not have access to smart phones, nor will they be able understand how to technically use them. Innovative methods should be used in such situations. ( In CMC Vellore they identified one person in the village with a smartphne, found a donor for providing him broadband connection for one month which cost the donor only Rs 200/=. They were able to counsel him through this arrangement. 14. Rehabilitation professionals should have full access to / authorise essential services including interstate travel passes and physiotherapy and Occupational therapy. should be available for all PwDs. 15. Ensure availability and use of appropriate PPEs during Covid 19 for all as per protocol. 16. Simplify disability certification process to allow easy access to access facilities provided by Government agencies. 17. Mental health certificates should ensure privacy and be non stigmatising. 18. Caregivers also need to be included in some manner in the disability certificate for those needing caregivers so that in such situations they can help provide relief. 19. E passes should be available for caregivers also of PwDs. The caregivers and NGOs supporting all need to needed to step out to help and care. 20. Ensure home delivery of essential items for families of PwDs. 21. Banks must ensure ATM services continue to operate even in rural areas (refills were not happening). 22. Set up cash delivery services to deliver cash at home for PwDs. 23. Blood donation camps should be allowed with all precautions for Thalassemics and Haemophiliacs. Donors should be allowed special passes to reach blood banks. 24. Research is essential for increasing public understanding about disability issues, informing disability policy and programmes, and efficiently allocating resources. They should also partner with technological istitutes with skills In Artificial Intelligence and quantum computing for research in this area. Set up one such centre in each region. 25. Telemedicine is being promoted but quality control and ethics of providing Telemedicine should be developed as soon as possible to ensure that patients do not suffer from poor Whose life matters? 13 quality services. This needs further clarity before scaling up. Telemedicine is recommended by many organisations including in WHO documents (WHO/2019nCoV/Disability/2020.1). Improving access to Assistive Priducts 1. Assistive products should be in the essential lists of supplies. 2. Services for delivering, measuring and repairing of assistive products must all be fully available during lockdown period. 3. Manufacturing of all assistive products must continue as an essential service with precautions. 4. Facilitate and fund NGOs for delivery of assistive products for PwDs. 5. Low vision aids, hearing aids, and batteries to run them must all be available as essential service. 6. Smartphone, Cellphone sale and repair and Battery shops should be allowed to remain open as these are a very important communication tool for the PwDs. 7. Encourage Community Based Rehabilitation Services to ensure wider reach of rehabilitation services. 8. Build Rehabilitation services including delivery of assistive products into primary care services and facilitate local delivery of assistive products. In India advantage could be taken of the proposed District Early Intervention Centres (DEIC) under the National Health Mission in every district of the country. ( Norvegian experience helped rural PwDs with rehabilitation services). These could also be common service centres providing for all the needs of the PwDs. 9. As multiple sectors are involved including Health, Social Justice and Empowerment, Education, Home ministry, Finance Ministry, Rural development, and Labour there should be an interministerial coordination committee specifically for the disabled. 10. Pandemic and disaster management policy to be linked together. For Hospitals and Institutions 1. Develop safe Protocols to run all Rehabilitation services. 2. Need to have a hospital/institutional helpline and Helpdesk for PwDs. 3. PwDs needing caregivers assistance for ADL and assisted ADLs should be allowed to have these caregivers with PPEs with them even during isolation. 4. Blood bank services should ensure availability of blood. Innovative methods of accessing regular or new doners using Radio, TV or even social media should be found and encouraged by the government. Whose life matters? 14 For NGOs and Aid agencies 1. NGOs should be encouraged and CSR funds should be made available to them to continue their services. Funding only for Covid 19 by CSR has made life difficult for many NGOs even for salaries. 2. NGOs could function as a bridge between the administration and the PwDs performing advocacy roles for PwDs. Our NGO could help many PwDs with downloading of forms and filling them to access services. 3. PwD database consolidation should be done and all information on PwDs available with NGOs, for providing support. 4. NGOs could run a regional local language 24X7 helpline for PwDs and also psychological counselling service. 5. Cases of violence reported in media against PwDs. Create support systems including legal and trained and empathetic police services to care for PwDs and who are victims of violence and abuse. 6. NGOs could help with community based rehabilitation programmes and training of caregivers of PwDs. 7. NGOs can educate PwDs communities on their entitlements and how to access them. They can be helped with empowerment of knowledge on these as well heped with downloading of forms and how to fill them (our NGO was able to do this for several persons). For WHO 1. Be the catalyst to national Governments to actively create a barrier free access for PwDs. 2. Help Capacity Building by linking experts in the field with service provders and help share experiences and wherever possible transfer of technology. 3. Create training material and modules for PwDs, Caregivers, NGOs for disease prevention. 4. Help with assistive products technology transfer for wider local reach nationally. LIMITATIONS AND CHALLENGES Only those persons who were accessible on phone could participate. This excluded all those who do not have access to a telephone. This could therefore exclude those not linked to an organisation or those that are economically constrained to not own a phone. There is also possibility of caregiver bias. REFERENCES 1. Finn J. An exploration of helping processes in an online self‐help group focusing on issues of disability. Health & social work. 1999;24(3):220‐31. Whose life matters? 15 2. Bhattacharjee M, Vairale J, Gawali K, Dalal PM. Factors affecting burden on caregivers of stroke survivors: Population‐based study in Mumbai (India). Ann Indian Acad Neurol. 2012;15(2):113‐9.
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 Whose Life Matters? Challenges, barriers and impact of COVID-19 pandemic on persons with disability and their care givers – Summary report SEA-Disability-10 © World Health Organization 2020 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. Whose Life Matters? Challenges, barriers and impact of COVID-19 pandemic on persons with disability and their care givers – Summary report. New Delhi: World Health Organization, Regional Office for South- East Asia; 2020. Licence: CC BY-NC-SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http://apps.who.int/iris. Sales, rights and licensing. To purchase WHO publications, see http://apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http://www.who.int/about/licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any third-party-owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. Printed in India 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 Table of Contents Summary ............................................................................................................................ 1 Project details ..................................................................................................................... 2 Objective ............................................................................................................................ 3 Background ........................................................................................................................ 3 Background / Situation .............................................................................................................. 3 Purpose of the study ........................................................................................................... 6 MethodIRB Approval .................................................................................................................. 7 IRB Approval and Development of a questionnaire .................................................................. 7 Literature review ....................................................................................................................... 7 Survey questionnaire trial and IDI training and translation of consent form ............................... 8 Telephonic interview and IDI Survey .......................................................................................... 8 Results ................................................................................................................................ 9 Data Analysis ............................................................................................................................. 9 Discussion ......................................................................................................................... 13 Children with clubfoot and other syndromes affecting lower limbs ......................................... 16 Autism ..................................................................................................................................... 17 Intellectual challenges .............................................................................................................. 18 Persons with Mental illness ...................................................................................................... 18 Persons of Thalassemia ............................................................................................................ 19 Deaf and hard of hearing persons ............................................................................................. 19 Persons with Hemiplegia and Paraplegia .................................................................................. 21 Persons with Amputations, Polio ............................................................................................. 21 Caregivers ................................................................................................................................ 22 Conclusions ....................................................................................................................... 22 Recommendations ............................................................................................................ 23 For policy makers ..................................................................................................................... 23 Covid Specific recommendations .............................................................................................................. 23 General Recommendations ...................................................................................................................... 24 For Hospitals and Institutions ................................................................................................... 27 For NGOs and Aid agencies ....................................................................................................... 28 For WHO .................................................................................................................................. 29 LIMITATIONS and Challenges ........................................................................................... 29 Quality control and assurance .......................................................................................... 30 Involvement of team members ......................................................................................... 30 References ........................................................................................................................ 31 Organisations involved in the study .................................................................................. 33 APPENDIX 1 ...................................................................................................................... 36 Questionnaires ......................................................................................................................... 36 APPENDIX 2 ...................................................................................................................... 37 APPENDIX 3 ...................................................................................................................... 52 Appendix 4 ................................................................................................................... 1154 Appendix 5 ................................................................................................................... 1158 1 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 4th 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 21st 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 4 August 2020 2 PROJECT DETAILS Main Applicant: Mathew Varghese, MS (mathewvarghese.ms@gmail.com) Head Orthopaedics Department, St. Stephen’s Hospital, Delhi 110054, India Contact Details: Email: mathewvarghese.ms@gmail.com 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. (mathewvarghese.ms@gmail.com) Syamala Gidugu, Executive Director, AADI , Balbir Saxena Marg, Hauz Khas, New Delhi 110016. (syamala.g@gmail.com) Santosh George, PhD, Director, Cure India International, A3/149, Janakpuri, New Delhi – 110058. (santoshgeorgeg@gmail.com) Anil Gurtoo, Director Professor, Head of Department of Medicine, Lady Hardinge Medical College, New Delhi 110001. (anilgurtoo@yahoo.co.in) Anil Jain, Consultant , HOD, Dr. P.K. Sethi, Department of Physical Medicine & Rehabilitation SDM Hospital, Jaipur, (anil.rehab64@gmail.com) Anupam Prakash, Professor, Department of Medicine, , Lady Hardinge Medical College, New Delhi 110001(prakashanupam@hotmail.com)) ArunSethi,OphthalmicDirector: ADEH, Gurgao, Haryana. flyingdoc16@yahoo.com Albina Sankar, Mobility India, Bamgalore Karnataka, India. albina@mobility‐india.org Bipin B Choudhary, The Cradle, Delhi. bbc4cradle@gmail.com Suranjan Bhattacharji, CMC Vellore Chittoor campus, Andhra Pradesh. s_bhattacharji@icloud.com Achal Bhagat, Chairperson, AADI, Delhi. achal.bhagat@gmail.com Ritika Sud, Professor, Department of Medicine, , Lady Hardinge Medical College, New Delhi 110001. (sud.ritika@gmail.com) Shirly G, MTech, Head Department of New Initiatives, National Institute of Speech and Hearing, Kerala, India (shirlyg@nish.ac.in) Dinesh Mohan, Ph.D.Honorary Professor, Transportation Research & Injury Prevention Programme, Indianstitute of Technology Delhi.(dineshmohan@outlook.com) Denny John, MBA, MPH,PT Adjunct Associate Professor Amrita Institute of Medical Sciences, Kochi, Kerala.(djohn@campbellcollaboration.org) 3 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 30th January, 2020 and with the steadily rising number of cases a complete lockdown of India was ordered from 22nd 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 22nd June 2020. 4 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 their services because of movement and travel restriction. Guardians of these PwDs had difficulty as they could not provide care without assistance. 5 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 7. Fear of COVID 19 with less options for hand wash, mask, gloves etc. 6 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. 7 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 Sign Language (ISL) video questionnaire using Google form. A deaf signer and an ISL content checker 8 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. 9 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 10 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 11 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 12 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. Table 7. Summary of psychological symptoms 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% 13 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 issues. Disruption of familiar routine was one of the issues faced by the person with disability. Safety 14 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. 15 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 liitle and covers only Non‐ Surgical/ Hospitalization, Corrective Surgeries for existing Disability 16 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. 17 \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% needed care givers help and this was a problem as all home based/ community rehabilitation services 18 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. 19 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. 20 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. 21 76% had mood changes and were sad, 81% were worried and 86% were irritated with 95% having sleep disturbances. While their paralysis caused its own physical and psychological problems the lockdown caused acute crisis among these families. Deprivation could be catastrophic in these families and only time will reveal the long term impact of the lockdown. Only 14 persons with paraplegia could be included in the study. They belonged to the rural group. 86% of them complained of problems of getting food. 71% had problems with loss of income. They also had many of the psychological problems (93% were sad). They were living with their families so that was a relief for them. Persons with Amputations 93% of the amputees wanted financial and food support. 57% were sad and irritated and 64% were anxious and worried. 64% had difficulty in essential supplies. Their main worry was when will the lockdown be over and when will their financial worries be over. Transport for access was also a concern. Some had difficulty in repair of their prosthesis. Patients with Polio and those attending Outpatients More than 50% of these were admitted in the hospital for surgery for deformity correction, and physiotherapy and gait training. The sudden lockdown had them stuck in the wards. The relatives that were there could not go back and those that did not have relatives with them could not come to the hospital. The situation continued throughout the lockdown and even when they could manage a transport the interstate pass was a big problem. Surprisingly 43% of them lived alone which would have made life difficult for them with their disabilities to access daily need supplies of groceries and ration. Transportation was big problem. The Ambulances were also difficult to get, the private ambulances were overcharging exhorbitantly. ma70% were anxious being in the hospital and not able to return homeor not able to access a hospital. 49% of them had disturbed sleep. Among their worries loss of Jobs and financial issues were uppermost. Some the caregivers were themselves handicapped this created double difficulties. Caregivers CG is defined as “a person who lives with the patient and is most closely involved in taking care of him/her at home.”(17). Before the survey was started the authors of this study had used the term caregiver in a more general sense including outside home, paid for support. However, during the study we realised all persons functioning as caregivers were family members. A majority of persons interviewed in this survey was the group of caregivers. This was because the largest group in the survey was children with clubfeet and other birh defects of the lower limbs. The other groups with predominant caregiver population were the hemiplegics, paraplegics and the hard of hearing. So the issues of loss of jobs, problems in getting food have actually been reported by the caregivers. Caring 22 for a person dependent on ADL is a full time job in itself, in addition the caregiver has to take care of himself/herself. A study on stroke patients showed that caregivers of stroke survivors face a significant amount of stress at all times.(17). So the stress of the lockdown and the Pandemic adds on to this creating a huge burden on the caregivers. Many of the caregivers actually broke down during the interview highlighting the level of stress they are going through. There is therefore a need to look at this group more empathetically and systemic corrective policy measures should be put in place not just during these pandemic times but also non Covid times. Economists could estimate a value to the services provided by them and this should be added to the social benefit for the family. CONCLUSIONS Covid 19 pandemic has impacted all populations where the Corona virus infection spread. It is quite evident that the virus has impacted lives of people not only in terms of mortality and morbidity but also socially, economically and politically. This survey was done to understand specifically how PwDs have been affected by the pandemic. The survey conducted telephonically across the country and covering a wide spectrum of disabilities, clearly shows that the PwDs have been impacted badly by the epidemic. In addition to loss of jobs to loss of income and access to food which would have been the fate of any impoverished community PwDs had to suffer from inadequate knowledge on the epidemic from communication barriers to significant stresses from psychological issues. Access to health and rehabilitation services, disruption of ongoing services, and availability and repair of assistive products were found to be major issues. The survey helps to flag these issues based on the responses to a formal interview and emphasises the need to anticipate these and provide services to minimise the created by the pandemic and the lockdown. The recommendations are based on the problems listed by PwDs and their caregivers. RECOMMENDATIONS WHO guidelines clearly state that ‘Actions need to be taken to ensure that people with disability can always access the health‐care services, water and sanitation services and public health information they require, including during the COVID‐19 outbreak.’(WHO/2019nCoV/Disability/2020.1). In Norway some primary healthcare workforces, including occupational therapists and nurses, are trained by specialists from regional assistive technology centres to provide a range of basic assistive products. Assistive technology in Norway – a part of a larger system. Oslo: Norwegian Labour and Welfare Administration, Department of Assistive Technology; 2017 (https://www.nav.no/en/ Home/About+NAV/Publications/_attachment/429663?_download=true&_ts=15a5f9dfd90, accessed 15 April 2019). 23 For policy makers Covid Specific recommendations. A total lockdown has never been done anywhere for any epidemic. The lockdown for Covid 19 pandemic affected the lives of entire populations adversely. The PwDs as a group are vulnerable because of physical, intellectual and psychological limitations. As a society we have a responsibility to ensure that the vulnerable are protected from any more suffering than what they are going through already. The survey and the detailed questionnaire and interaction with a wide spectrum of PwDs across the country has helped us formulate the following recommendations wherever lockdowns are done for any epidemic or pandemic: 1. Total lockdown for any epidemic or pandemic should be with reasonable notice for everyone especially the PwDs. 2. During the notice period Information regarding the reasons for the lockdown and the safety measures should be widely publicised through all public media. In addition to the messages in all local, regional and national languages, it should also target specific needs of PwDs: a. Public campaigns on TV or Radio should have sign language component for deaf and hard of hearing. b. All Television messages must have subtitles. c. For the intellectually impaired there should be slow speed messages, or other means of reaching out. d. Targetted disability specific messages should be given on Radio and TV. For example how to do social distancing for those dependent on ADLs also. How do you do hand washing for those who cannot use their hands. (To avoid situations like the mother who set an alarm for washing her child’s hand every 20 minutes. The radio messages were hand washing time every 20 minutes!) 3. Campaigns for the correct use of masks for PwDs should have been made. (mask campaigns gave no details helping PwDs. How to protect using masks was mentioned but the details specific for the Autistic, mental impairment persons were not there. Getting them to wear them was difficult and the caregivers lived in fear of their child getting Covid 19. Innovative solutions like transparent masks for the hearing Impaired should have been promoted to enable lip reading (Appendix 5 ) 4. Special isolation units allowing caregivers to accompany and stay with the PwD needed to be created and this should be publicised. Many Caregivers were worried that in case the Pwd becomes Covid positive the PwD will be kept in isolation. (we learnt in interviews paraplegics did not seek help for fear of isolation suspecting Covid.) 24 5. 24x7 helplines should be created to help caregivers and PwDs regarding: a) Clarifications regarding protection for PwDs and what caregivers need to do to protect the Pwd should be widely publicised b) Allow for PwDs, especially those with Autism, Intellectual Impairment and mental illness special exemption for open space activities. Designate parks for this and allocate timings. This is essential as confinement of these persons have led to many psychological problems. c) PwDs who are dependent on caregivers even for ADLs should be allowed help from outside with all the precautions. Systems should be put in place to allow this and for training caregivers and helpers. General Recommendations 1. Social support systems to be created either as part of Community based programmes or through voluntary organisations to help PwDs during such Pandemics as persons with disability are a vulnerable group during lockdown for the pandemic and they need to be protected. 2. Depending on the nature and severity of disability the caregivers also need to be recognised as a vulnerable group. Support systems should be created for them. 3. Financial support should be provided for all categories to tide over the period of loss of jobs, salary cuts. The quantum could vary and the manner should be based on severity of disability and degree of dependence on caregivers. (Despite the assurances of the administration of continuing jobs and continued salary payments the PwDs and their caregivers continued to lose jobs and have salary cuts and/ or loss of income.) Therefore, Social security measures must be activated for PwDs in such lockdowns. 4. Employment guarantee of some form should be provided for all to at least earn subsistence money. (Loss of Job was a major complaint of the PwDs and their caregivers during the survey. This affected the whole family.For the poor unemployed in India there is a scheme called MNREG (Mahatma Gandhi National rural Employment Guarantee Scheme). However, one major drawback of the scheme is that the scheme allows only physical labour, which in most cases of PwDs is not a possibility. PwDs should therefore have a non‐physical labour based employment guarantee scheme. 5. Food and/or dry rations should be provided at the door step of PwDs. This is essential as one of the main complaints of PwDs and their caregivers was access issues for food. 6. Health care should be viewed as a continuum from primary care, emergency care, hospital based care including rehabilitation, all should continue to be available and accessible to all especially to the vulnerable group of PwDs even during lockdowns. 25 7. Rehabilitation services are essential services for PwDs and must continue to be available during the pandemic. Several PwDs and their caregivers were upset with the disruption of rehabilitation services and concerned about its impact on their PwD. Rehabilitation services were closed in all public hospitals( at least for six weaks completely and thereafter only in a restricted manner). So none of the disabled could access them. Issues regarding PwDs may not appear as emergent, but the consequences of disruption of a service can impact the whole family therefore it is important that rehabilitation services are not discontinued during such lockdowns. 8. Patient care transport vehicles should be made available for ease of access to hospitals. Many could not access hospitals because of lack of transportation. In the evaluation of patients coming to Outpatient Departments only those who had their own transportation could access. Taxies were not available and ambulances were either not available or too expensive. One patient walked 30 kolometers to access hospital care and ended up with a trophic ulcer on his foot. 9. Social and economic benefits announced by the government must be easily available to all sections of society. For availing some social benefits that were available the persons need to access Apps on Smartphones. This excluded all those that did not have smartphones. 10. Government should subsidise or help design cheap smartphones to increase the social reach of smartphones using social media. Onwership of smartphones may not improve overnight therefore to dowload forms and passes for access becomes an issue. 11. Cybercafes with good ventilation and social distancing could help access for forms and access to social benefits. Every village should have a cyberhelp volunteer with a smartphone and free broadband during lockdown to help villagers access services online. This will also help the illiterate access social media. These Cyberhelp volunteers should be linked to the Accredited Social Health Volunteers for support in health care delivery. Rehabilitation professional should have full access to / authorise essential services including interstate travel passes and physiotherapy and Occupational therapy. should be available for all PwDs. 12. Both Public and private providers must ensure availability and use of appropriate PPEs during Covid 19 13. Simplify disability certification process. Lack of a disability certificate is a common issue. To access facilities provided by Government agencies and receive entitled welfare scheme measures this should be easily available. One reason given was the process of disability certification is tedious and takes several trips to hospitals. Assessment for disability certification should simplified at least for the severely disabled where even a teacher/sarpanch/BDO should be competent to give the certificate. The certification should 26 only check ability to do functions rather than looking at the medical diagnosis.Privacy issues for the PwD(more important for mentally ill) can be addressed by a simple modification of the process; after the initial medical certification of disability, and verification of her identity, the individual should be issued a document stating the concessions or benefits for which she is qualified without any further detail about the nature of her condition. (16) 14. Caregivers also need to be included in some manner in the disability certificate for those needing caregivers so that in such situations they can help provide relief. 15. E passes should be available for caregivers also of PwDs. The caregivers needed to step out to help and care for the PwD but they could not do so for want of a pass. 16. Caregivers contribution should be monetised and given as social support to the family. 17. The administration should facilitate home delivery of essential items for families of PwDs. 18. Assistive products should be in the essential lists of supplies froPwDs. Services delivering, manufacturing, measuring and repairing of assistive products must be fully available during lockdown period. 19. Set up a separate 24x7 helpline and counselling service for PwDs 20. Facilitate and fund NGOs for delivery of some of these services for PwDs. 21. E passes should be available for all NGO staff who are working for rehabilitation of PwDs. (Our NGO staff was refused passage for three days for signing of cheques for buying dry rations for distribution to the impoverished. Finally wer allowed after finding a police contact and getting special letter of recommendation). This delayed delivery of essential Dry rations to families. 22. All educational campaigns for the pandemic must be disable friendly and aspire to reach the diverse spectrum of disabilities through formal and innovative means. 23. Travel needs of PwDs to access health and Rehab service must be planned by policy (One family with a disabled child drove all the way from Kanpur 450 Km away only to be disallowed at Delhi Border. Finally they were allowed in after several phone calls and over three hours of harassment). 24. Banks must ensure ATM services continue to operate even in rural areas as many rural persons had difficulty in access to cash as ATMs had no cash and refills were not happening. Set up cash delivery services to deliver cash at home for PwDs. 25. Smartphone, Cellphone sale and repair and Battery shops should be allowed to remain open as these are a very important communication tool for the PwDs. 26. Blood donation camps should be allowed with all precautions of physical distancing and PPEs as Thalassemics and persons requiring blood transfusions face acute shortage of blood. Donors should be allowed special passes to reach blood banks. 27 27. Encourage Community Based Rehabilitation Services to ensure wider reach of rehabilitation services. 28. Long term strategy should be to build Rehabilitation services into primary care services and facilitate local delivery of assistive products including Low vision aids and hearing aids. In India advantage could be taken of the proposed District Early Intervention Centres (DEIC) under the National Health Mission in every district of the country. ( Norvegian experience helped rural PwDs with rehabilitation services). These could also be common service centres providing for all the needs of the PwDs. 29. Tertiary level research centres of excellence with multi disciplinary teams must be created at least in every region with adequate funding to conduct reaearch, develop assistive devices, for capacity building and create teachers for training of trainers and develop protocols and SOPs. Research is essential for increasing public understanding about disability issues, informing disability policy and programmes, and efficiently allocating resources. (18) These must be part of existing tertiary care centres and not stand alone. They should also partner with technological istitutes with skills In Artificial Intelligence and quantum computing for research in this area. 30. Telemedicine is recommended by many organisations including in WHO documents (WHO/2019nCoV/Disability/2020.1). However, many do not have access to smart phones, nor will they be able understand how to technically use them. Innovative methods should be used in such situations. ( In CMC Vellore they identified one person in the village with a smartphne, found a donor for providing him broadband connection for one month which cost the donor only Rs 200/=. They were able to counsel him through this arrangement. The concept of Village Cyber help volunteer could be spread in all villages. Quality control and ethics of providing Telemedicine should be developed as soon as possible to ensure that patients do not suffer from poor quality services. This need further clarity before scaling up. 31. As multiple sectors are involve including Health, Social Justice and Empowerment, Education, Home ministry, Finance Ministry, Rural development, and Labour there should be an interministerial coordination committee specifically for the disabled. 32. Pandemic and disaster management policy to be linked together. For Hospitals and Institutions 1. Rehabilitation services should remain open during the lockdown period. This should be part of essential services. 28 2. Assistive products, measurement for, manufacture, fitting, training use and repairs should all be available in institutional service 3. Professionals delivering these services should be available in house when the PwDs are accesing services. 4. Need to have a hospital/institutional helpline and Helpdesk for PwDs. 5. PwDs needing caregivers assistance for ADL and assisted ADLs should be allowed to have these caregivers with them even during isolation in case they develop Covid. (Many parents were scared of taking their children with fever to hospital for fear that their dependant child would be isolated as a covid suspect. Attendant caregiver must be allowed with a Covid positive child with disability as policy not as an exceptional service. 6. Blood bank services should ensure availability of blood. Innovative methods of accessing regular or new doners using Radio, TV or even social media should be found and encouraged by the government. Blood bank services were affected as Colleges and schools are closed and no ‘blood donation Camps’ were held. This is important to ease availability of blood for Thalassemics and others requiring regular transfusions. For NGOs and Aid agencies 1. NGOs should be encouraged and CSR funds should be made available to them to continue their services. Many services for PwDs are delivered by NGOs but these are difficult times for NGOs and aid agencies because of funds crunch and “compassion fatigue”. It is important to continue that they are encouraged to continue their services. 2. NGOs should function as a bridge between the administration and the PwDs performing advocacy roles for PwDs. 3. PwD database consolidation should be done and all information on PwDs available with NGOs, Socila support agencies, Institutions should be made into a unified list to ensure delivery of essential services. Their close contact with PwDs can help understand their problems better and find solutions and also help networking with likeminded professionals. 4. NGOs could run a regional local language 24X7 helpline for PwDs( we were able to train counsellors for Psychological counselling of distressed persons and families affected by the Lockdown and create a format for recording such services. 5. Create support systems including legal and trained and empathetic police services to care for PwDs and who are victims of violence and abuse. As there are reports of aggression and violence in families of PwDs, especially those with Mental illness, intellectual impairment and autistic children and anecdotal reports of violence against PwDs NGOs could help both in counselling and advocacy against this. 6. NGOs could help with community based rehabilitation programmes. 29 7. NGOs can educate PwDs communities on their entitlements and how to access them. They can be helped with empowerment of knowledge on these as well heped with downloading of forms and how to fill them (our NGO was able to do this for several persons). For WHO 1. Be the catalyst to national Governments to actively create a berrier free access for PwDs. 2. Help Capacity Building by linking experts in the field with service provders and help share experiences and wherever possible transfer of technology. 3. Help with assistive products technology transfer for wider local reach nationally. 4. Share international knowledge base and facilitate networking of professional in the field. 5. Be the stimulant for local research and sharing success stories. LIMITATIONS AND CHALLENGES a. Only those persons who were accessible on phone could participate. This excluded all those who do not have access to a telephone. This could therefore exclude those not linked to an organisation or those that are economically constrained to not own a phone. b. As multiple organisations and counsellors were involved in data collection we did find differences in style of response documentation but this was accepted as communication skills of counsellors are likely to be different and the quality of response depends of kind of rapport the counsellor is able develop with the care giver or PwDs. c. As direct interaction with the severely affected was not be possible, there will be a caregiver bias in the responses. The secondary information given by the caregiver had to be relied upon. d. The survey could only look at a cross section of PwDs during the period of lockdown. There may be long term implications which are beyond the scope of this study. e. Long term impact whether, physical, emotional or economic can only be done in a prospective long term study. QUALITY CONTROL AND ASSURANCE a. Within 5 – 7 days of the beginning of the survey questionnaire and IDI, a national review on problems related to the questionnaire will be done and any urgent modification done as appropriate in the content or the process of the survey. b. State coordinators of the clubfoot programme will supervise the research assistants and counsellors who are doing the survey. 30 INVOLVEMENT OF TEAM MEMBERS 1. Dr. Mathew Varghese: Overall management of project, coordination of activities. As he runs the only Polio ward in the country he collected information from all the inpatients and their issues. Persons of disability coming to the Out Patient Departments were also interviewed on their problems and challenges in coming to St Stephen’s Hospital. 2. Syamala Gidugu: Supervised data collection from all the contact persons linked to AADI. This included a rural outreach area in Ballabhgarh and children with Cerebral Palsy, Autism, Duchenne dystrophy and other intellectual impairment. 3. Dr Achal Bhagat, Psychiatrist Chairperson AADI, Sarthak NGOs developed the questionnaire for mental illness and supervised data collection from them. 4. Dr Santosh George: As director of the Cure International India Trust (CIIT) and Children in India programme was inchrge of all the survey contacts of the clubfoot and CP programme. He supervised training of counsellors for data collection and supervised coordination of nation wide data collection. He also supervised the creation of Excel spread sheet to ensure data collected were entered in a uniform sequence and easy to analyse format. 5. Prof Anil Gurtoo, Prof Anupam Prakash and Prof Ritika Sud: Professors of Medicine running Covid 19 ward in medical college, supervised the survey on Thalassemia persons and gathered information on the difficulties faced by them and their care givers. 6. Ms Shirly G: supervised the translations and preparation of the video for sign language questionnaire. The persons who were deaf and gathered information from hard of hearing and the contacts at the Department of New Initiatives, National Institute of Speech and Hearing, Kerala, India. 7. Dr Arun Seth: gathered information on all the visually impaired persons on the list of contacts of ADEH eye centre 8. Dr Albina Sankar collected information from the contact list of cerebral palsy and other disabilities associated with Mobility India. 9. Dr BB Choudhary collected information on visually challenged persons associated with the NGO The Cradle. 10. Dr Anil Jain collected information on the Polio and amputees associated with SDM Hospital Jaipur 11. Dr Suranjan Bhattacharji and his team from CMC Vellore, Chittoor campus gathered information on Hemiplegics, Stroke and paraplegic persons associated with their hospital 12. Mr Denny John was be involved in the testingof the questionnaire and IDIs, literature review and support for analysis. 31 13. Prof Dinesh Mohan: He helped with the analysis and recommendations and as the adviser. REFERENCES 1. WHO. Considerations for quarantine of individuals in the context of containment for coronavirus disease (COVID‐19) 2020. 2. Wikipedia. 2020 coronavirus pandemic in India. 2020. 3. Kapiriri L, Ross A. The Politics of Disease Epidemics: a Comparative Analysis of the SARS, Zika, and Ebola Outbreaks. Global Social Welfare. 2020;7(1):13. 4. Roda W, Varughese MB, Han D, Lia MY. Why is it difficult to accurately predict the COVID‐19 epidemic? . Infect Dis Model ; 5: 271–281. 2020;5:11. 5. Board WE. Improving access to assistive technology. World Health Organization.142. 6. Sundwall DN. Quarantine in the 21st Century: To Be Effective, Public Health Policies Must Be Inclusive. Am J Public Health. 2019;109(9):2. 7. Ashish Awasthi CMP, Manisha Dubey, Sanjay Rastogi Trends, prospects and deprivation index of disability in India: Evidences from census 2001 and 2011. Disability and Health Journal. 2017;10(2):10. 8. Gudlavalleti VSM. Challenges in Accessing Health Care for People with Disability in the South Asian Context: A Review. International journal of environmental research and public health. 2018;15(11):2366. 9. WHO. Rehabilitation considerations during the COVID‐19 outbreak, PAHO, WHO, Rehabilitation https://wwwpahoorg/en/topics/rehabilitation. 2020. 10. Naraharisetti R, Castro MC. Factors associated with persons with disability employment in India: a cross‐sectional study. BMC public health. 2016;16(1):1063‐. 11. Finn J. An exploration of helping processes in an online self‐help group focusing on issues of disability. Health & social work. 1999;24(3):220‐31. 12. James JW, Basavarajappa C, Sivakumar T, Banerjee R, Thirthalli J. Swavlamban Health Insurance scheme for persons with disabilities: An experiential account. Indian J Psychiatry. 2019;61(4):369‐75. 13. Arora NK, Nair MKC, Gulati S, Deshmukh V, Mohapatra A, Mishra D, et al. Neurodevelopmental disorders in children aged 2‐9 years: Population‐based burden estimates across five regions in India. PLoS Med. 2018;15(7):e1002615. 14. Balhara YPS, Verma R, Deshpande SN. A study of profile of disability certificate seeking patients with schizophrenia over a 5 year period. Indian journal of psychological medicine. 2013;35(2):127‐34. 15. Kashyap K, Thunga R, Rao AK, Balamurali NP. Trends of utilization of government disability benefits among chronic mentally ill. Indian J Psychiatry. 2012;54(1):54‐8. 16. Mishra NN, Parker LS, Nimgaonkar VL, Deshpande SN. Disability certificates in India: a challenge to health privacy. Indian J Med Ethics. 2012;9(1):43‐5. 17. Bhattacharjee M, Vairale J, Gawali K, Dalal PM. Factors affecting burden on caregivers of stroke survivors: Population‐based study in Mumbai (India). Ann Indian Acad Neurol. 2012;15(2):113‐9. 32 18. Kumar SG, Roy G, Kar SS. Disability and rehabilitation services in India: issues and challenges. J Family Med Prim Care. 2012;1(1):69‐73. 19. Rehabilitation considerations during the COVID‐19 outbreak, PAHO, WHO, https://www.paho.org/en/topics/rehabilitation 33 ORGANISATIONS INVOLVED IN THE STUDY 1. CURE Int. India Trust (CIIT) is a national voluntary organisation committed to work with all children born with clubfoot CIIT in partnership with each of the 29 state governments has established 324 designated weekly clubfoot clinics across the nation where children are given free world‐class treatment. The partnership started with signing a Private – Public Partnership MoU with the Government of National Capital Territory of Delhi in 2010 (informal program started from Jan 2009). In the last 11 years, over 70,000 children are registered for free treatment and in the next 12 months around 12,000 new children born with clubfoot will be enrolled for clubfoot treatment across the nation. The partnership with the health system within each of the states and with the National Health Mission it is expected that more children will be identified with the active participation of Rashtriya Bal Swastya Karyakram (RBSK) screening team. While the new‐born children are screened for deformities by the ASHA workers, the nursery‐school going children are screened by the Anganwadi teachers and the children between the age of 6 and 18 years are screened by the mobile screening units managed by the RBSK. All these children identified for any birth deformities or disabilities or development delays or deficiencies are referred to the District Early Intervention Centres (DEIC) and government medical colleges for treatment and care. Details of Children identified with clubfoot are shared with CIIT to ensure that these children receive compulsory and complete treatment. Clinic locations pan India 2. Children in India is a national network of inspired healthcare professionals and family members of children living with Cerebral Palsy. You are welcome to join our movement that strives to provide quality care and support to ensure a life without limits for children with Cerebral Palsy in India. 3. AADI : Action for Ability Development and Inclusion is a premier institute involved in development of Policy, research, training, advocacy and skill development in the field of disability , specifically children with Cerebral Palsy. The rural programme works at the community level looking at community based rehabilitation. This programme based in Ballabgarh, Haryana: The focus of the program is the creation of a responsive community which fulfills the needs of persons with disability by providing accessible services and promoting equal participation and opportunities to persons with disabilities. This is being facilitated by trained rural rehabilitators, village level volunteers, the larger community and professional staff. Focusing on disability, poverty and gender issues the program works towards convergence of services that benefit all people in the community. 34 TOTAL POPULATION AND PERCENTAGE OF PEOPLE WITH DISABILITY ( AS PER 2011 CENSUS) Geographical Area Total population Total disabled people % disabled people Haryana 25351462 546374 2.16 Faridabad 1809733 41972 2.3 Ballabhgarh 214894 Not available PERSONS WITH DISABILITY AS PER HOUSE TO HOUSE SURVEY BY AADI IN 2015 25 Villages 57348 1720 3% AADI works in all of the 65 Panchayats (82 villages) in Ballabgarh Block reaching out to approximately 3000 persons with disabilities and their families. Stakeholders People with Disabilities Their Families Neighborhood Communities Local Governance Primary Level Workers Service Providers (Health, Education, Livelihood, Social Securities) Stigma, negative attitudes, discrimination, abuse and exploitation, lack of effective health and rehabilitation services, lack of accessible inclusive services and opportunities continue to marginalize a large number of people with disabilities and their families. Appropriate information, opportunities for growth and learning, accessible services are few and far in between, sporadic and reach to a minute population. 4. St Stephen’s Hospital: is the oldest hospital of Delhi with one of the busiest orthopaedic departments in Delhi. The hospital has one of the only Polio dedicated ward in the country and is involved in rehabilitation of a many varieties of disability among persons with disability. The hospital also runs the worlds largest single day clubfoot clinic. 5. Lady Hardinge Medical College: Lady Hardinge Medical College (LHMC), is one of the oldest medical colleges of India. Lady Hardinge Medical College was started in 1916 to empower and include women as doctor professionals at a time when female sex was not involved in major professions. LHMC has two premier hospitals associated to it, namely the Smt. Sucheta Kriplani Hospital and Kalawati Saran Children’s Hospital. With over 1200 bed strength in its fold, LHMC offers all medical specialty services, along with specialty clinics in several arenas. For over a decade Adult Thalassemia services are being provided at Smt. Sucheta Kriplani Hospital under the Department of Medicine. Presently over 115 registered with the Adult Thalassemia Day‐Care Centre, which is the only dedicated centre catering to Adult transfusion‐dependent thalassemia persons. The centre is now a 10‐bedded space, and offers comprehensive facilities to the registered persons. Due to the corona virus crisis, amidst the lockdown, two blood transfusion camps were organized to meet the acute shortage of blood, 35 in view of the shortage of voluntary donors, who could not make it to the blood bank for donations. But there are problems persisting of availability of blood and access to care of persons. 6. National Institute of Speech and Hearing: This centre is a premiere institute for rehabilitation of those with hearing and speech impairment. Based in Kerala one of the earliest states in India to be affected and supposedly better prepared than other states we hope survey here will give us insights to reduce the suffering of PwDs. 7. Mobility India: based in Bangalore they are NGO working with the didsabled. They gathered data on CerebralPalsy, visually impaired. Their persons were predominantly from Karnataka, neighbouring Andhra and Kerala and Assam. 8. Santokhba Durlabhji Memorial Hospital: this is a non Governmental Hospital. The rehab department became famous because of Dr PK Sethi, the developer of Jaipur Foot. Currently headed by Dr Anil JainPrimarily works for rehabilitation of Amputees and Polio victims. 9. The Cradle: this an NGO working with the visually handicapped. They joined the programme late so so full data not yet available 10. CMC Vellore, Chittor Campus: This century old medical college famous for its rehabilitation work especially among the paraplegics. They have a campus in Chittoor from where the data was collected for this. There was some delay in data collection from here as they had an institutional policy of having their Ethics committee clearance for any joint research work. They called their patients from their database of Hemiplegics and paraplegics. Monitoring and Reporting CURE India’ State Program Coordinators (SPCs) will work with their team members who are present in different districts and contact PWDS including children under treatment for clubfoot and cerebral palsy to understand and assess the requirement using the standard questionnaire. Ethical Clearnnace, Consent and Confidentiality An assurance of confidentiality of information will be given to all stakeholders participating in the needs assessment. Consent will have to be verbal on phone in view of the lockdown. Institutional consent from the Ethics committee from St Stephen’s Hospital and AADI will be sought on an urgent basis for the project. 36 APPENDIX 1 Questionnaires SF‐12 Health Survey This survey asks for your views about your health. This information will help keep track of how you feel and how well you are able to do your usual activities. Answer each question by choosing just one answer 37 APPENDIX 2 Questionnaires Challenges, Barriers and impact of COVID 19 on PwDs and their care givers 1. Cover Sheet 1 Impairment Cluster No. 2 House No. 3 Subject ID No. Village: State: Pin code: 4 Interviewer Name 5 Date (Day/Month/Year): __ __ / __ __ / __ __ 6 Language of Interview: 7 Care Giver? Patient 1 = Hindi 1 = PwDs (Person with a disability) 2 = English 2 = Care Giver 3 = Others specify 8 What is the PwDs age (years)? 9 Gender 2 = female 1 = male 10. Type of Disability: (tick whichever applicable) 1. C.P 2. Musculoskeletal Impairment 3. Autism 4. Visual Impairment 5. Hearing Impairment 6. Thalassemia 7. Mental illness 8. Others (Specify) 11. Do you have a disability Certificate? 0 = No, 1 = Yes 1 2. Do you live in your own house or rented house? 13. Do you live alone or with Family? 1 = with family 2 = Alone 14. How many members in your home? 15. Have you ever attended School? 1 = Yes 0 = No 1 = Primary 2 = Secondary 3 = High School 4 = University 6= No education 7 Others 16. Do you own a 1. TV/Radio 2. Mobile Phone 3. Motor car 4. Motor Cycle 5 Bicycle 17. Degree of Impairment/Level of support: 1. High Completely dependent 2. Medium confined to home with Assistance for ADL 38 3. Low Independent at home but outside needs help 4. Completely independent 2. Covid related Information Level 1. Are you aware of Covid 19 and pandemic now? (Yes. Not fully, No ) 2. Modes of information about covid19 :( TV, Social media, friends, caregivers 3. What are the preventive measures taken: Maintaining social distance Use of soap Use of mask Some of these None of these 4. Do you know where to go/who to contact with if you are unwell with cold cough or fever? Yes No 9. Have you suffered any health problem in the past two week? If yes, what care did you get, describe. ` 39 3. Covid related Social involvement in current situation 10. Has your daily routine changed? If yes, explain. 11. Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? 12. What has caused you the most hardship in the past two weeks? i. Have you or your care‐giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. ii. What do you feel should have been done to help people like you during the lock down. iii. What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? iv. Are there any social, emotional or psychological issues that you are facing that you wish to mention? v. Are you facing difficulties when you don’t meet your friends during the lock down period? vi. list the difficulties If so vii. Are you facing difficulties with leisure, recreational activities outside being curtailed viii. If so list them 13. What was your worst experience during the lockdown? 40 4. Screening for Mental Health in the times of COVID‐19 If you have had no mental health problem in the past then please answer the next set of questions. The next sets of questions are about your mental state in the past thirty days. 2. In the last 3weeks, have you noticed a change in your mood? Yes /No 3 3.1 Have you felt tired or fatigued for no good reason Yes No 3.2 Have you had multiple pains and aches without a reason 3.3 Have you had poor digestion for without a reason 3.4 Have you had irregular bowel habits 4 4.1 Have you felt anxious? Yes No 4.2 Have you felt worried? 4.4 Have you felt restless? 4.5 Have you had a sense of panic/ ghabrahat? 1.1 Is there any change in your sleep pattern? 1.2 If Yes, is it less or more ? If yes then answer the following Yes No 2.1 Have you felt sad 2.2 Have you felt irritated 2.3 Have you felt extremely happy 2.4 Have you lost interest in things that I used to do 2.5 Do you find it difficult to enjoy 2.6 Are you always thinking negatively 41 5. FOOD & NUTRITIONAL NEEDS Food & Nutritional needs Yes No Changes if any Reasons for change Difficultie s Suggestio ns (listing) Any other comments/ info provided by PwDs/caretak er 1 What has changed in your food/eating pattern/habit because of lockdown? 2 III. Procurement of daily supplies Procurement of daily supplies Yes No 1 Do you have a problem in procuring essential supplies for your daily living? 2 If yes what are the difficulties List them 42 6. CARE GIVER NEEDS Care giver Needs Yes No Change s if any Reasons for change Difficul ties Suggestio ns (listing) Any other comments/ info provided by PwDs/caretak er 1 Do you need a caregiver? Full time/ part time/ occasionally? 2 Is the care giver from home or outside? 3 Is the caregiver able to continue services to PwDs as before lockdown? 4 Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.)) 5 Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? (transportation/ division of labour etc.)) 6 Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) 43 7. Family Relationships Family Relationships Yes No Changes if any Reasons for change Difficultie s Suggestion s (listing) Any other comments/ info provided by PwDs/caretake r 1 Are all members of the family with you during this lock down 2 If yes , are you happy 3 Are there any problems If yes list 4 Do you have any fears/worries in the current family situation? If yes list 44 8. Challenges in Clubfoot and Related Birth Defects 1. Your child has a birth defect, has the treatment started or has it been discontinued? 2. If it is discontinued, what are the reasons? (list) 3. If treatment is completed, have you been able to do follow‐up visits? If no, reasons. 4. Is your child using any assistive aids (braces)? Is there any problem in getting that or repairing that or changing that? 5. Was any surgery planned, what was the surgery planned and how has the lockdown affected it? 6. What in your opinion could have been done to reduce the difficulties? 45 9. I Challenges of Musculo‐skeletally impaired including CP‐ Self Care Needs, Medical Needs, Rehab Needs I. Self Care Needs: Self care needs Yes No Changes if any Reasons for change Difficulties because of change and general difficulties Suggesti ons (listing) Any other comments/ info provided by PwDs/caretak er 1 Is there a difference in the management of activities of daily living during lock down period ( bathing, grooming, eating, basic transfers, toileting, dressing/undressin g etc ) 2 Is there a difference in the management of domestic and other activities( Instrumental activities of daily living) eg: Shopping, housekeeping, managing money, food preparation etc ) 46 9.II MEDICAL NEEDS Medical Needs Yes No Changes if any Reasons for change Difficulties Suggesti ons (listing) Any other comments/ info provided by PwDs/caretak er 1 Do you take any regular medicine? 2 Were you able to stock the required amount before lockdown? For how many days you have the stock available for regular medicine? 3 Do you have any other medical needs? 4 Do you have access to general or emergency medical services if required? ( fracture / severe diarrhea/ burn/ pressure sores etc) 5 Do you know any person in your vicinity (self, family, neighboursetc) affected by COVID 19? 6 Do the affected person have access to required medical services? 47 9.III REHABILITATION SERVICES Rehabilitation Needs Yes No Changes if any Reasons for change List Difficulties Suggesti ons (listing) Any other comments/ info provided by PwDs/caretak er 1 Are you able to access rehabilitation services during lockdown period Physiother apy/Occup ational Therapy Speech Therapy Counseling Behavior manageme nt Special Education Orthotics and assistive aids and devices 2 What in your opinion is the effect of not able to access the rehab services List the effects/impact of not being able to access services 48 10. Challenges in the Admitted & Patients visiting Hospital Admitted patients: 1. Is your patient admitted, if yes what is the condition for which he is admitted? 2. Has his treatment been completed, Yes or No? If yes, how long back and why is he not able to go home? 3. Is he waiting for surgery? If yes, reasons for delay? 4. Has your family been able to visit you? If no, why? 5. Has your family been able to communicate with you? If no, how do you feel about it? OPD Patients: 1. Have you come to the hospital for emergency or for follow‐up of treatment already started? 2. Have you come by your own transport or Taxi or Ambulance? Did you face any difficulties on the way? 3. If you have come for follow‐up, were you afraid of coming because of COVID? 4. If you have come for emergency, what is the nature of emergency? 5. Are you worried about your patient getting COVID during admission? 6. Any other worries or difficulties that are troubling you? 49 11. Challenges related to Hearing Impaired 1. How has the lock down affected your life? Assistive device, Self‐care Academic Recreation 2. In what all ways has people wearing Masks affected your communication? 3. Have you been interacting with your friends and peer group? As before Less than before More than before 4. If less than or more than before, why? How are you doing it? 5. Are you a student? If yes, how are you managing your studies? If you are having online classes, how do you rate them? 6. If employed, are you working from home? What are the challenges in working from home? 7. If you are a parent, and your child is less than five years, how are coping with speech therapy? Especially follow up of cochlear implant surgery for switch on and Audio Verbal Therapy (AVT)? 8. Would you like to make some suggestions to improve the situation faced by people like you lockdown period? 9. How do you think you could improve your access and awareness of what is happening? 50 12. Challenges in the Visually Impaired 1. Residence : (a) Geographical location (b) Distance from Eye care Facility (c) Travel time to Eye Centre (d) Mode Of travel 2. Visual disability: (a) Type / Diagnosis / (b) Duration (c) Treatment : recommended / Current / to be evaluated 3. Eye affected ; Right / Left / Both 4. Any associated Systemic Condition / treatment 5. Current Status Under Lockdown (a) Availability of Eye medicine ( if required) (b) Availability Of optical aid ( if required) (c) Accessibility available to Eye Care provider under lockdown conditions (d) Domiciliary support available to instil medicine / undertake routine abulations (e) Replacement / spare available or not 6. Visual Stress : (a) Clinical parameters / Regularity of drug instillation/ (b) Computer / TV Screen Time, and any symptoms (c) Pain, redness, discharge from affected and status of other eye 51 13. Challenges in Thalassemia persons 1‐ Access related issues Pre Lockdown During Lockdown Any change in residential location A) Home to Care centre a‐ Travel mode ‐ b‐ Time taken residence to LHMC‐ c‐ Barriers ‐ d‐ Care support/Attendant ‐ B) Care Centre to Home a‐ Travel mode ‐ b‐ Time taken residence to LHMC‐ c‐ Barriers ‐ d‐ Care support/Attendant ‐ 2‐ Communication Related issues a‐ At TDCC/Blood Bank Yes/No Yes/No If Yes, please state so 3‐ Resources‐ a‐ Blood Availability Amount (unit) Source b‐ Transfusion accessories c‐ Chelation drugs d‐ Duty Staff presence Nurse Helper Doctor Care person 52 APPENDIX 3 Results of the survey segregated in to different disability conditions 1. Clubfoot and related birth defects Total number of Clubfoot andrelated birt defects of feet cases – 3828 Gender Male Female OTHERS 2495 1333 3 Do the PwDs have a disability Certificate? YES NO 256 3575 Do you live in your own house or rented house? OWN HOUSE RENTED HOUSE BLANK 3021 724 86 Do you live alone or with Family? at home? ALONE WITH FAMILY BLANK 186 3563 82 Have you ever attended School? YES NO BLANK 3095 474 262 Highest Education NO EDUCATION HIGH SCHOOL PRIMARY SECONDARY UNIVERSITY OTHERS BLANK 280 910 874 836 579 50 302 Are you aware of covid 19 and pandemic now? YES NO NOT FULLY BLANK 3218 123 343 147 Modes of information about covid19 CAREGIVER S FRIENDS SOCIAL MEDIA TV BLANK 91 165 645 2798 132 53 Do you know where to go/whom to contact if you are unwell with cold, cough or fever? YES NO BLANK 2765 899 167 Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? YES NO 1603 2228 Are you facing difficulties when you don’t meet your friends during the lock down period? YES NO BLANK 710 2618 503 Are you facing difficulties with leisure, recreational activities outside being curtailed YES NO BLANK 497 2740 594 Disability Certificate Yes No 54 In the last 3weeks, have you noticed a change in your mood? YES NO BLANK 1421 2030 380 Have you felt sad? YES NO BLANK 1136 1880 815 Have you felt irritated? YES NO BLANK 954 2046 831 Have you felt extremely happy? YES NO BLANK 505 2468 858 Have you lost interest in things that I used to do? YES NO BLANK 633 2325 873 Do you find it difficult to enjoy? YES NO BLANK 864 2106 861 Are you always thinking negatively? YES NO BLANK 294 2657 880 Have you felt tired or fatigued for no good reason? YES NO BLANK 502 2420 909 55 Have you had multiple pains and aches without a reason YES NO BLANK 293 2628 910 Have you had poor digestion for without a reason YES NO BLANK 364 2542 925 Have you had irregular bowel habits YES NO BLANK 449 2465 917 Have you felt anxious? YES NO BLANK 696 2221 914 Have you felt worried? YES NO BLANK 1223 1734 874 Have you felt restless? YES NO BLANK 615 2340 876 Have you had a sense of panic/ ghabrahat? YES NO BLANK 653 2300 878 56 Is there any change in your sleep pattern? YES NO BLANK 1304 1681 846 1.2 If Yes, is it less or more? MORE LESS BLANK 829 1179 1823 Is there any change in your food/eating pattern/habit because of lockdown? YES NO BLANK 1450 1918 463 Do you have a problem in procuring essential supplies for your daily living? YES NO BLANK 1052 2261 518 Do you need a caregiver? Full time/ part time/ occasionally? FULLTIME PART TIME OCCASIONALLY BLANK Felt Worried Yes No 57 1167 328 1272 1064 Is there any change? YES NO BLANK 382 2592 857 Is the caregiver from home or outside? FROM HOME OUTSIDE BLANK 2755 391 685 Is there any change? YES NO BLANK 704 3127 Is the caregiver able to continue services to PwDs as before lockdown? YES NO BLANK 2652 768 411 Is there any change? YES NO BLANK 763 2549 519 Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) YES NO BLANK 1319 2046 466 Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? YES NO BLANK 2898 540 393 58 Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) YES NO BLANK 2779 714 338 Are all members of the family with you during this lockdown YES NO BLANK 3189 414 228 If Yes, are you happy? YES NO BLANK 2618 918 295 Are there any problems YES NO BLANK 668 2796 367 Do you have any fears/worries in the current family situation? YES NO BLANK 860 2531 440 Your child has a birth defect, has the treatment started ? YES NO BLANK 3327 211 293 If Yes, is it continued or has been discontinued? CONTINUED DISCONTINUED BLANK 1964 1534 333 59 If treatment is completed, have you been able to do follow‐up visits? YES NO BLANK 1906 1376 549 Have you or your care‐giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. *CANT PROVIDE MEAL AND HOSPITAL FACILITIES *FINANCIAL ISSUES * DIFFICULT TO GET NECESSARY ITEMS * LOST THE SOURCE OF INCOME * NO ISSUES What do you feel should have been done to help people like you during the lockdown *ACCESS TO DOCTORS/ FOOD ITEMS/WATER/ * AVAILABILITY OF AMBULANCE FOR MOVEMENT OF PEOPLE *SUPPY OF BASIC NEEDS * TELEPHONIC AWARENESS Treatment for Clubfoot Continued Discontinued 60 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? *AVAILABILITY OF TRANSPORT PERMISSION FOR THE MOVEMENT OF PERSONS *PROVIDE MEDICAL HELP *PROVIDE ESSENTIAL SUPPORT * AWARENESS *PROVIDE MENTAL SUPPORT Are there any social, emotional or psychological issues that you are facing that you wish to mention? *FEELING OF STRESSED AND DEPRESSED * ANXIETY CAUSED DUE TO SOCIAL MEDIA AND NEWS *NON‐ AVAILABILITY OF PUBLIC TRANSPORT * LOSS OF WORK AND INCOME Has your daily routine changed? If yes, explain * CHANGE IN THE WORK PATTERN * NO CHNAGES * INCREASE IN THE HOUSEHOLD CHORES * HAS BEEN DIFFICULT TO GET THE DAILY ESSENTIALS List the difficulties, if so * MENTAL STRESS AND DIFFICULTY IN COMMUNICATION * FEELING RESTRICTED AT HOME What was your worst experience during the lockdown? * BEING STUCK AT HOME * CANT GET BABY FOOD EASILY * BEING JOBLESS * ECONOMIC PROBLEM 61 Changes * NO MUCH CHANGE * UNAVAILABILITY OF GROCERIES AND VEGETABLES * CHANGE IN THE EATING TIMING/ PATTERN Reasons for change * CLOSURE OF SHOPS AND MARKET * UNAVAILABILITY OF ITEMS * FINANCIAL CRISIS What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwDs/Caregiver * INCREASE IN THE PLAY TIME OF THE KIDS * CARE GIVERS BECOMING MORE CAREFUL ON THE SAFTY MEASURE * CONVEYANCE PROBLEM * IRREGULARITY IN THEIR AVAILABILITY What is the change required? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwDs/Caregiver * NEED FOR PROVIDING THEM WITH MASK AND SANITISERS * CREATING MORE AWARENESS AMONG THEM If discontinued, what are the reasons (list) * DUE TO LOCKDOWN * CLINICS TURNED TO COVID WARDS * TRANSPORTATION PROBLEM Is your child using any assistive aids (braces)? Is there any problem in getting that or repairing that or changing that? MORE THAN 50% OF THE RESPONDENT CHILD WERE WEARING BRACES AND NO PROBLEMS ARE BEING FACED IN ITS AVAILABILITY 62 Was any surgery planned, what was the surgery planned and how has the lockdown affected it? * TENOTOMY PROCESS OF TREATMENT * NO OTHER MAJOR SURGERY 63 2. Children with Cerebral palsy, Autism and associated intellectual challenges. Cerebral Palsy ‐ 687 Gender MALE FEMALE 457 230 YES NO 376 311 Do you live in your own house or rented house? OWN HOUSE RENTED BLANK 563 119 5 Do you live alone or with family at home? ALONE WITH FAMILY BLANK 36 643 4 Have you ever attended School? YES NO 492 175 Disability Certificate Yes No 64 Highest Education No education High school Primary Secondary Universit y Others University/ college Blank 108 104 191 124 2 11 94 53 Does any member of your household own the following BC‐Cycle, MP‐Mobile, C‐ Car, B‐ Bike, R‐ Radio BC MP BC, MP MP BIKE MP, BC MP, BC B B R R, BC R MP R, MP BC R MP R, B R, TV R TV, MP R, TV, MPB, C TV TV, MP B TV, MP, B, C BLA NK 21 87 25 2 1 1 8 4 6 1 2 2 4 1 1 19 48 121 5 284 42 Are you aware of covid 19 and pandemic now? YES NO NOT FULLY BLANK 610 5 61 11 Modes of information about covid19 TV SOCIAL MEDIA FAMILY FRIENDS ALL CAREGIVER 403 149 1 45 49 49 What preventive measures should be taken SOCIAL DISTANCING USING MASK USING SOAP ALL OF THESE NONE OF THESE SOME OF THESE BLANK 260 82 56 5 1 225 9 YES NO BLANK 523 148 16 Have you suffered any health problem in the past two weeks? YES NO BLANK 26 643 18 65 Are you facing difficulties when you don’t meet your friends during the lock down period? YES NO BLANK 127 515 45 Are you facing difficulties with leisure, recreational activities outside being curtailed YES NO BLANK 126 505 56 In the last 3weeks, have you noticed a change in your mood? YES NO BLANK 237 422 28 Have you felt sad? YES NO BLANK 248 325 114 Have you felt irritated? YES NO BLANK 198 370 119 Have you felt extremely happy? YES NO BLANK 81 485 121 Have you lost interest in things that I used to do? YES NO BLANK 128 432 127 Do you find it difficult to enjoy? YES NO BLANK 182 373 132 Have you felt tired or fatigued for no good reason? YES NO BLANK 93 462 132 Have you had multiple pains and aches without a reason YES NO BLANK 63 494 130 Have you had poor digestion for without a reason YES NO BLANK 54 498 135 66 Have you had irregular bowel habits YES NO BLANK 68 483 136 Have you felt anxious? YES NO BLANK 146 410 131 Have you felt worried? YES NO BLANK 265 303 119 Have you felt restless? YES NO BLANK 123 439 125 Have you had a sense of panic/ ghabrahat? YES NO BLANK 120 435 132 Is there any change in your sleep pattern? YES NO BLANK 256 308 123 Felt Worried Yes No 67 Felt Restless Yes No 68 Is there any change in your food/eating pattern/habit because of lockdown? YES NO BLANK 262 376 49 Do you have a problem in procuring essential supplies for your daily living? YES NO BLANK 203 439 45 If yes, Full time/ part time/ occasionally? FULL TIME PART TIME OCCASIONALLY 189 93 249 Is there any change? YES NO BLANK 65 504 118 Is the caregiver from home or outside? HOME OUTSIDE BLANK 505 69 113 Is there any change? YES NO BLANK 51 531 105 Is the caregiver able to continue services to PwDs as before lockdown? YES NO BLANK 425 163 99 Is there any change? YES NO BLANK 85 493 109 Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) YES NO BLANK 195 384 108 Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? YES NO BLANK 69 479 117 91 Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) YES NO BLANK 457 136 94 Are all members of the family with you during this lockdown YES NO BLANK 577 77 33 If Yes, are you happy? YES NO BLANK 491 159 37 Are there any problems YES NO BLANK 120 525 42 Do you have any fears/worries in the current family situation? YES NO BLANK 181 448 58 Is there a difference in the management of activities of daily living during lock down period ( bathing, grooming, eating, basic transfers, toileting, dressing/undressing etc.) YES NO BLANK 142 494 51 Is there a difference in the management of domestic and other activities (Instrumental activities of daily living) eg: Shopping, housekeeping, managing money, food preparation etc) YES NO BLANK 259 369 59 Do you take any regular medicine? YES NO BLANK 180 479 28 Do you have any other medical needs? YES NO BLANK 70 103 546 38 Do you have access to general or emergency medical services if required? ( fracture / severe diarrhoea/ burn/ pressure sores etc.) YES NO BLANK 201 435 51 Do you know any person in your vicinity (self, family, neighbours etc.) affected by COVID 19? YES NO BLANK 60 592 35 If yes, do the affected person have access to required medical services? YES NO BLANK NOT APPLICABLE 103 360 205 19 Are you able to access rehabilitation services during lockdown period • Physiotherapy/Occupational Therapy• Speech Therapy• Counselling • Behaviour management• Special Education• Orthotics and assistive aids and devices YES NO BLANK NOT APPLICABLE 138 464 75 10 Autism PwD's Age Severity of disability/ Degree of disability Gender Do the PwD have a disability Certificate? Oldest‐ 20 High Completely dependent ‐ 10 Female‐9 Yes‐22 Youngest‐ 8 Medium confined to home with Assistance for ADL‐11 No ‐7 Average‐16% Low Independent at home but outside needs help‐ 8 Are you aware of covid 19 and pandemic now? Modes of information about covid19 What preventive measures should be taken Do you know where to go/whom to contact if 71 you are unwell with cold, cough or fever? Yes‐10 TV, family member, caregivers Social distancing, use of mask, soap Yes‐17 Not fully ‐8 No‐ 12 Have you suffered any health problem in the past two weeks? Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? What do you feel should have been done to help you during the lockdown Yes‐9 Yes‐29 Yes‐25 Prior information before lock down No‐20 No‐4 Restlessness& self hitting due to not going out Few hours school time should be allowed to special schools Rehabilatation services should be allowed Transportaion should be made available for hospital E‐passes should be issued to PwDs Door step medicine delivireies should be available What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? List the difficulties, if so 72 Rehab services, therapy, counselling, special school and counseling should be allowed Irritated, restless and start self‐hitting . he doesn’t smile and at times remains sad. Yes‐15 Not being able to go to school makes them irrated anf behavioral change. Govt should provide care giver to person with disability if he /she is diagnosed with corona or if that person is quarantine. In both situations that person needs care giver Stessed, OCD Symptoms, Shouting, screamimg, changed in the be No‐14 Distrubed sleep, change in appetite, not meeting friends makes them cry, bored and change in behaviour Prior information before lockdown Doorstep medical service, video calling with doctor. Specific strategies can be suggested to parents with disabilities about how what all can be done at home to engage people with disabilities.Guidance for this needs to be provided by the Government, schools and other institutions.It is important to know how to deal with behavioral issues of children with autism as they would usually increase in the period of lockdown. Are you facing difficulties with leisure, recreational activities outside being curtailed If so, list them What was your worst experience during the lockdown? In the last 3weeks, have you noticed a change in your mood? 73 Yes ‐19 Not able to meet friends, Parks and physical avtiviteis are making them restless and bored Taking care of special child whole day is stressfull. Yes‐17 N0‐10 Not able to send the child to school, taking care of unpredictable behavior, not able to go out made the child cry a lot, not able to mend the broken toys during lock down No‐12 Have you felt sad? Have you felt irritated? Have you felt extremely happy? Have you lost interest in things that I used to do? Yes‐14 Yes‐14 No‐17 Yes ‐17 No‐15 No‐14 No‐12 Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Have you had multiple pains and aches without a reason Yes‐19 No‐18 Yes‐4 Yes‐3 N0‐10 No‐13 No‐14 Have you had poor digestion for without a reason Have you had irregular bowel habits Have you felt anxious? Have you felt worried? Yes‐4 Yes‐3 Yes‐10 Yes‐5 No‐15 No‐17 No‐7 No‐9 Have you felt restless? Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? If Yes, is it less or more? Describe 74 Yes‐17 Yes‐4 Yes‐17 Stay awake for most of time during night and keep roaming inside house during night‐3 No‐13 Less sleep‐10 Late night sleep‐3 More sleep‐3 Is there any change in the appetite? If Yes, is it less or more? Describe Is there any change in your food/eating pattern/habit because of lockdown? Changes Yes‐7 More appetite‐7 Yes‐9 Eating more‐2 No‐14 Less‐ 2 N0‐20 Non veg not available Eating late and more‐1 75 Reasons for change Difficulties Suggestions Do you have a problem in procuring essential supplies for your daily living? No physical activities due to lock down Cant buy outside food difficult to convince him Prepare food what they like once in a week with nice presentation Yes ‐4 Eating online food has made gain weight Gaining weight due to no activities Physical activities should incorporate at home like watering plants, helping in cooking etc. No‐25 Staying at home all the time Having digestion issues. If yes, list them Do you need a caregiver? If yes, Full time/ part time/ occasionally? Is there any change? Less vegetable options in the market. Had to stand in que for long outside the shop to buy groceries Yes ‐18 Full time ‐15 Yes‐8 No‐11 Part time ‐3 No‐12 Occassionally ‐3 What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwD/Caregiver Is the caregiver from home or outside? Is there any change? What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwD/Caregiver They need 24X7 care ‐3 Outside‐1 Yes‐9 My son is heavy built, is not able to take weight on his legs, so becomes difficult to carry him for daily chores within house also. This is tiring. And maid's work also 76 requires physical exertion. So i feel doubly tired. Since they cant go to school they require more care and attention at home No‐12 Needs caregiver all the time ‐2 Is the caregiver able to continue services to PwD as before lockdown? Is there any change? What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwD/Caregiver Does caregiver need any support to continue services to PwD? (transportation/ division of labour etc.) Yes‐21 Yes‐7 Not able to give enough time to the person with autism as there is need to do other domestic work Yes‐15 No‐1 No‐15 Maids stop coming, so too many work to managed No‐5 Mother has less time so takes support of other family members. All working cohesively. Regularly takes suggestions from educator from AADI What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwD/Caregiver Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwD? What is the change required? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwD/Caregiver Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) Need support for managing the household work‐3 Yes‐22 she has become more conscious about hygiene and cleanliness than before‐1 Yes‐23 77 Maid stop coming Taking more safety measures Mother needs support for household work What is the change required? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwD/Caregiver Are all members of the family with you during this lockdown If Yes, are you happy? If no, reasons for change, difficulties and suggestions caregiver is using required materials for prevention of COVID like use of sanitizer and frequent washing hands‐3 Yes‐27 Yes‐23 The father is stranded in Holland. Elder brother of the person with disability is in US where the situation is bad. No‐2 No‐5 Verbal Fights between the mother and father.Though it is not new, the fights have increased in this period. Being at home all the time together irritates eaxh other Are there any problems Do you have any other medical needs? Reasons for change, difficulties and suggestions Yes‐11 No‐13 Intellectual Impairment Gender Do the PwD have a disability Certificate? Do you live in your own house or rented house? Do you live alone or with family at home? Have you ever attended School? 78 Oldest‐33 Female‐6 Yes‐22 Own‐27 Family‐28 Yes‐25 Youngest‐ 11 Male‐22 No‐6 Rented‐1 No‐3 Average‐ 25 Highest Education Are you aware of covid 19 and pandemic now? Do you know where to go/whom to contact if you are unwell with cold, cough or fever? Have you suffered any health problem in the past two weeks? Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Primary‐6 Yes‐15 Yes‐25 Yes‐ 5 Yes‐26 No, not able to move out from home, contacting them thro phone Secondary‐7 Not fully‐ 13 No‐3 No‐23 No‐2 High School‐11 Others‐1 None‐ 3 Have you or your care‐giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help you during the lockdown What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐ down period? Are you facing difficulties with leisure, recreational activities outside being curtailed In the last 3weeks, have you noticed a change in your mood? Have you felt sad? Yes, father gets angry as he cant go to work. Mother gets tired with all the housework as there is no maid. Financial support should be given to us Financial, food,medical and pandamic support. Yes‐12 Yes‐12 Yes‐9 79 My father is not coming from Delhi due to lockdown to bring my epilepsy medicine. That fears what happens when my medicine finishes. I have medicine for up to 24th april 2020 prior information helps in preparation No‐16 No‐16 No‐11 Have you felt irritated? Have you felt extremely happy? Have you lost interest in things that I used to do? Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Yes‐9 No‐19 Yes‐4 Yes‐7 Yes‐0 Yes‐1 No‐11 Yes‐1 No‐16 No‐13 No‐20 No‐19 Have you had multiple pains and aches without a reason Have you had poor digestion for without a reason Have you had irregular bowel habits Have you felt anxious? Have you felt worried? Have you felt restless? Yes‐1 Yes‐7 Yes‐9 Yes‐7 No‐20 No‐18 No‐20 No‐12 No‐11 No‐13 Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? Is there any change in the appetite? Is there any change in your food/eating pattern/habit because of lockdown? Do you have a problem in procuring essential supplies for your Do you need a caregiver? 80 daily living? Yes‐3 Yes‐5 Yes‐4 Yes‐8 Yes‐7 Yes‐13 No‐17 No‐15 No‐17 No‐19 No‐21 No‐12 Is there any change? Is there any change? Is there any change? Does caregiver need any support to continue services to PwD? (transportation/ division of labour etc.) Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwD? Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) Yes‐1 Yes‐1 Yes‐2 Yes‐19 Yes‐15 No‐18 No‐18 No‐16 No‐15 No‐2 Are all members of the family with you during this lockdown If Yes, are you happy? Are there any problems Do you have any fears/worries in the current family situation? Have you got any money from schemes/ subsidies? (Pension/ scholarship/ jandhan etc.) Are you able to access your money from Bank/ ATM/ Paytm/ Online transactions etc Yes‐27 Yes‐25 Yes‐4 Yes‐9 Yes‐14 Yes‐14 No‐1 No‐3 No‐21 No‐19 No‐14 No‐8 Not applicable‐7 Is there a difference in the management of activities of daily living during lock Is there a difference in the management Do you take any Do you have any other Do you have access to general or Do you know any person in your 81 down period ( bathing, grooming, eating, basic transfers, toileting, dressing/undressing etc ) of domestic and other activities( Instrumental activities of daily living) eg: Shopping, housekeeping, managing money, food preparation etc ) regular medicine? medical needs? emergency medical services if required? ( fracture / severe diarrhoea/ burn/ pressure sores etc.) vicinity (self, family, neighbours etc.) affected by COVID 19? Yes‐9 Yes‐9 Yes‐8 Yes‐2 Yes‐25 No‐28 No‐19 No‐19 No‐20 No‐25 No‐1 Are you able to access rehabilitation services during lockdown period • Physiotherapy/Occupational Therapy• Speech Therapy• Counselling • Behaviour management• Special Education• Orthotics and assistive aids and devices Which all services are you able to access Is there any change? If so, what is the reason for the change? List the difficulties, suggestions and comments List the effects/impact of not being able to access to the rehabilitation services Yes‐8 No‐13 Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help you during the lockdown What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? 82 yes, Not going to school, study at home Yes, talk on phone No Go to dentist Medical support, food /ration support No kaam par jaana band ho gayaa hai, baki sab theek hai kisi se milanaa pahale bhi nahin hota tha, abhi bhi nahin hota, kaam par hi samay nikal jaata hai No issue Pandemic Allowence for people with disabilities Koi pareshaani nahi hai Yes. Gets up late but sleeps on time by 10pm. Does not sleep in the afternoon otherwise cant sleep on time at night. No school. Manages own work himself. Spends time watching tv, playing with younger brother, colouring, games, video games. Studies with mother. Helps make own bed, keep vegetables away, clean cupboard Yes. Used to go to nani house in Krishna nagar, now cant, misses it Yes, father gets angry as he cant go to work. Mother gets tired with all the housework as there is no maid. Do not know Do not know No. Except that it is boring Yes,daily routine has changed completely as I don’t need to wake up early in the morning for work, earlier I used to spend my whole day and night at go down(workplace).Now completely staying at home No,I don’t have friends and relatives with whom I meet very often. But I was part of Roshni group at AADI centre where I used to go once a month to attend a meeting My house is small and my sister and her family (husband and three kids) got stuck in my house due to lockdown. They came to Delhi to visit for two /three days but they are staying here from past one month. We have space issue Financial support should be given to us Financial help can support families of person with disabilities I am missing my work place where I spend more hours than home Yes Before lock down there was a fixed routine: wake up early in the morning, ready Yes,In Office there are many friends but now these “Abhi to koi pareshani nahi hai, march month ke According to ashok office not closed. Ashok ne According to Ashok All families have work "Factory ke jo dost sath kaam karte the vo mazak 83 for job, fixed time for breakfast, dinner and evening snacks but now a days everything has changed, late to wake up and then delay all the things. Eating frequently. When I was going to work , time went smoothly but now time passes is a big difficulty . Not go anywhere like walking in park , TV is the only mode of time pass, I have no mobile.Feel sadness , not interested in household work” Before lockdown ek fixes routine tha early morning ready ho kar job ke liye jana aur time per lunch and evening snacks and dinner lekin aab late uthte hain to sab kuch late he hota hai. Khana bhe khate he rahate rahate hain baar baar. Job per ja rahe the to time ka pata he nahi chalta tha aab time pass karna he mishkil ho raha hai. Mobile hai nahi kabhi TV dekhte hain aur park ya bhar ja nahi sakete. Bhut Sadness ke kya karu ghar ke kaam mein man nahi lagta.” days there are no talking,no face to face contact, I have no contacts numbers of my colleagues to talk "Office mein dosto ke sath man lagta tha lekin aab baat he nahi hoti kyuke milte nahi aur na he phone hain aur number bhe nhai hai jo baat kar lan." salary mil gayi the and pension bhe aagayi hai lekin aab ke baad pata nhi ke salary aayege ya nahi." Father supports kar rahe in all aspects kaha ke “ Office nahi band hone chaye the, ghar mein man nahi lagta aur time bhe pass nhai hota, sara routine bigad gaya” and income. "Sab ko kaam mil jaye aur income ho" according to father. 1.“More awareness regarding corona and community has more sensitization about corna" 2. Village mein log abhi bhe normal days ki tarah hai ghoom rahe hai to lock down ka strictly se follow hona chaye. 3.Needy logo tak schemes ka benefit pauchna chaye and disabled jo bhe kaam kar rahe hain unke liye kaam hona chaye and baad mein bhe regular work milna chaye janha vo kaam kar rahe the. karte the , hanste the baat karte the aur kaam bhe karte the jo aab nahi hota to man he nahi lagta." Ghar se bhar jane ka man karta hai per sab mana karte hain. Ghar mein kitne baat karne. Yes, school nahin jaa rahi hoon lekin bhabhi se silai seekh rahi hoon koi mushkil nahi hai, lekin bua nah aa paa rahi hai No Koi madad nahi chahiye Bhai ne kahaa ki paisa bhej do No, Koi mushkil nahi hai pita ne bataya Yes, cannot go to school, work online at home Have not been able to meet maternal uncle who I meet No Facility of going to doctor in case Provide rations and facility of No 84 often and share many things of severe pain going to doctor Yes. I was on internship. was going to my father factory to learn but now i am at home so routine is totally changed. i go to bed late and wake up late in the morning. some times due to late breakfast lunch gets skip.In the evening, I used to go to English speaking classes, now that too is missed, so I spend time playing a board game with my sister. Yes, I have friends but do not have any problem. I talk to them on the phone No, there is not an issue. My parents are supporting me prior information helps in preparation Disabled people should have a medical help facility near their house, which does not make them difficult. Specials who are difficult to walk “Ghar se bhar to ja nahi rahe hain to mobile aur TV dekh rahe hai. Phale park mein nahi jaate the aab ja rahe hain subha 5 am daily last 15 days se.” According to father” school jata tha to kuch time table tha aab to koi time table nahi hai, kuch hai ne nahi karne ko. Khao aur late raho. Training per lagwana tha jo lockdown ke karan ho nahi raha. Aise to jo bhe sikha hai vo bhool jayange.” During my stay at home I regularly watch TV and mobile. For the last 15 days father sent me to the sports ground for walking at 5 PM. According to father when he was going to school there was a time table but now nothing is for doing. So ate and Father ke according dinesh ka koi dost nahi hai bus ek hai jo sham ko milta hai vo bhe aab aaya hua hai sonepat se lockdown ke reason se. Dinesh phone per relatives and cousins se baat karta hai regular.Dinesh ka koi dost he nahi hai. No one is there to share thoughts and feeling in this age, During school there are so many activities in which dinesh involved but now only watching TV and mobile Father vegetable selling ka business karte hain sec‐3 ballabgarh, faridabad mein vo sealed hai to nahi ja rahe hain. Abhi wheat crop season mein labour work mil gaya hai to problem nahi ho rahi hai aur saving se guzara ho raha hai. lekin agar lockdown increased hota hai to problem hogi. Vegetable wale ko permission hai to work to start karonga lekin transport ke problem hogi kyuke auto nahi "Ration and money de do koi pareshani nahi hogi kisi ko" Provide Ration and money to every one so that no problem to any one "Govt ko jo needy hain untak schemes and ration dene chaye aur unko jankari dene chaye ke kya schmes hai jo unko milege ." Governments provide ration and schemes to those who are needy and also provide information about the scheme and who is eligible and what is the process of getting schemes and monitor that. 1 Is lockdown mein bhi kaushish hai ke baccho ko pura khana mil jaye aur jo phale bhe kah rahe hain vo khaye. 2 Kaam ka pata nahi kya hoga aab to 40‐45 din ho jayegen to fir se vo income and market ban ne mein waqt lagega. Parents try to provide complete meals as they ate before lock down and worry about work to generate income and build rapport with 85 slept. Send him for vocational training but not possible. Due to lock down they forgot what they learnt. chalnge aur humare pass koi vehicle hai nahi vo baat hai. Ration dealer se ration mil gaye hai lekin vegetale and other food stuff bhe hona chaye na like dal, rice, oil customers as before. He is not going to work due to lockdown, mostly sitting and helping only to arrange food for cattle. No, earlier also no friends ever visited and now also no one comes for him. It has not caused any difficulties. No Some help to combat this disease. " ye bimari sahan nahi hogi, jaan ka khatra hai". Fearing this disease. YES,HAVE TO REMAIN AT HOME,NOT GOING TO AADI,WAKE UP LATE IN THE MORNING. NO,NIETHER THEY GO OUT NOR ANY BODY VISITS THEM. YES,NOT FEELING FREE,"BORE HO JATE HAIN,BANDHEY HUYE HAIN,GHAR MEIN HI REHNA PADTA HAI" WE ARE AT HOME AND WE UNDERSTAND THAT THIS LOCKDOWN IS FOR US ONLY,SO WHATEVER IS GOVT.DOING IS GOOD. "Logon ko dekhkar mushkil hoti hai jinke paas yahan ghar nahi hai,ye log vapis jaa rahe hain,unke liye yahin kuchh karna chahiye" No,but sometimes miss my friends at AADI. Yes. I am not able to go to AADI. I am not able to meet my friends. I cannot go for walk. I am worried about my Nani. She is old and lives alone with nana. I wanted her to come and stay with me. She refused. At times i do have argument with my mother about why do I need to work at home, but then I reconcile thinking my mother is asking to work for my own benefit. There should have been some training organized maybe on computer skills or cooking skills. Persons with disabilities who do not have money should get food, medicine and money. They must also get transport to go to hospital. Sometimes I do get irritated that when will all this finish and I will be able to go to AADI. Yes Not being able to go to school Chacha aur bua ke pass nahi jaa pa Nothing with this regards was shared as The care giver shared that “ Govt ne BPL Hum low middle class families kaam Armaan ne bas kaha ki main bahar nahi ja 86 Cant play outside khel nahi pa raha Getting up Late , raat ko ramayan dekh raha hu Har time haath dhote raho( keep washing hands ) raha hu , aisa lag raha hai jail main band ho gaya hu Apne colony ke dosto ke saath kabadi nahi khel pa raha hu they managed to work out a routine “ Humne routine bana ke rakha hai “ Father is a driver and is at home . he has not received his salary for 2 months Parents are uneducated , they are not being able cope with the homework nor are they being able to send him for tutions category ke liye jho help ki hai , hum low middle class ke liye koi suvidha nahi hai , humare tou Jandhan account bhi nahi hai , Na disability se related suvidhaye hai kyonki Armaan borderline IQ hai , Aur abhi salary bhi nahi hai ‘ Govt to humare bare main bhi sochna chahiye par kaise jaaye jab public transport nahi hai , aur atleast health ke mamle main humko choot de deni chahiye, govt ko . Main to apne malik se apni job ki guarantee bhi nahi maang sakta pa raha, feeling that his younger brother has to teach him hes not liking this , Father aage ki chitna kar rahe hai , stress hai , helpless feel kar rahe hai , aage ki chinta hai rent kaise denge agar mereko paise nahi mile, Aalas aa raha hai koi routine nahi hai No Yes relatives live in the same building No Monetary help for essentials Monetary help for those who do not have disability certificate No kaam par jaana band ho gayaa hai, baki sab theek hai kisi se milanaa pahale bhi nahin hota tha, abhi bhi nahin hota, kaam par hi samay nikal jaata hai No , Koi mushkil nahin hai Pandemic Allowence for people with disabilities Koi pareshaani nahi hai Haan, ghar main hain, subah road par ghoom lete hain. Rumaal bhandhkar bahar nikalate hain. Police nahin pakadti hai subah, dur dur ghoomate hain. Khali hain , sab band ho gayaa hai. TV dekhate hain, mummy ki Nahin, ghar se hi seedhe kaam par jaate hain, kisi se nahin milate hain sab theek hai sab theek hai 87 madad karaa dete hain Before Lock down i am going to various places but now i am going in emergency only. Nowadays my uncle goes for wheat harvesting so I support them in cattle caring. So to support them my selfcare routine is changed. “Emergency mein he ghar se bhar ja rahe bus, bina kaam ke bhar nahi gaye. Neighbourhood mein uncle rahate hain unka wheat harvesting chal raha hai last 10 days se to unko support karne se routine self care ka time change hua hai. “ ” Phale log bhar mil jate the to do baat kar late the aab koi nahi milta to baat he nahi hoti, village ke koi update he nahi milti” Before lock down peoples meet out the house and talk to them but nowadays no one meet to talk and no update for village My father is not coming from Delhi due to lockdown to bring my epilepsy medicine. That fears what happens when my medicine finishes. I have medicine for up to 24th april 2020 “Pension time per mil jana chahiye abhi tak message nahi aaya to worry hai nahi to sab teek hai” Getting pension on time and no message is received till date that is worry point otherwise all is okay " Ration and schemes de govt sabko, koi bhuka na rahe aur sabke pass kuch na kuch kaam ho jis se unka ghar chalta rahe." "Log he nahi mil rahe aur to aur padosi bhe baat nahi kar rahe hai . Vaise to hum ghar se bhar jaate he nahi the lekin aab to bilkul jarori ho vegetable, milk lene he ja rahe hain." No one is meeting to talk even neighbours are not talking. “Pahle school jata tha aur aab khet per ja rahe daily and also support in water plants, supervision of agriculture labour and support family in cattle caring. Selfcare mein time change ho gaya hai bathing and food. Routine fix nahi hai, sab badal gaya” Before lockdown, going to school regularly nowadays going to the agriculture field daily. Do watering plants, supervisor agriculture labour and support family in cattle caring. Time change of bathing and eating due to going to the field. Routine is changed and also Before lockdown all friends are playing and spend time with each other but nowadays only talk to a few friends who have contact numbers on mobile only .We all are not meeting them physically now so feel sad. During lock down items are costly so not purchased from village shops. Father purchased from near by village Dayalpur All schemes that are distributed to people should workout early and reached to person in advance All Schemes reached to village delay and reached to needy as soon as possible and monitored also Mother says “Phale sab group mein baith kar baat karte the lekin aab koi milta nahi hai to maan nahi lagta.”Not interacting with people felt unhappy 88 watching mobile and TV more "phale school jate the aab kewal TV dekh rahi hain and domestic work mein support kar rahi hai‐ dusting and cleaning and washing of utensils. Jo school jane and education ka time tha vo aab TV dekhane mein ja raha hai." So education and learning are fully impacted. Time change for bathing and by instruction only before they do only one instruction but now do according to their will "Log kam milte hain to baat he nahi hoti sab ghar per he hain ya emergency mein he nikal rahe hain" Koi kisi ka haal bahi pocuh raha hai. School routine mein busy the to behavior controlled tha lekin aab ghar ke chezzo ko fanke rahi hain. Ration late mila and father delhi job karte hai to aab nahi ja rahe hai , kewal march ke salary mile hai and april ke salary ka pata nahi hai. Aur future mein job jane ka bhe dar hai "Ration time per milna chaye and kuch scheme ya money milne chaye or source of income hona chaye." "Ration time per milna chaye and kuch scheme ya money milne chaye or source of income hona chaye jo sabka guzara ho jaye." "Job ka stress hai aur village ke koi update nahi milte and koi sukh dukh bantne ke liye nahi milta" Stress of losing job,no update of village and no one is met to share feelings and emotions Yes. When She used to go to AADI there was a fixed routine for her and for us also. There is no fixed routine now. No. It is difficult. AADI must open. I will meet my friends. No. If there was some app or program in computer, which could have kept her busy and happy. National Disability commissioner must make some program, under which these people should get trained to work at home. They must also get money for that. Whenever she gets cheque from AADI she feels so good and we also feel good. She had been indulged in self talk. During lockdown it has increased a lot. We are unable to go to doctor to consult. No, it is same as before. He was not working or studying anywhere earlier also. No friends and relatives visited before and after lockdown. It is not causing No Measures for this disease, cause it will impact the lives a lot. It Financial help at a later stage might be required. We all fear this disease. 89 any difficulties. should get over soon. “phale school jate the aab kewal TV dekh rahi hain and domestic work mein support kar rahi hai‐ dusting and cleaning and washing of utensils. Jo school jane and education ka time tha vo aab TV dekhane mein ja raha hai.” So education and learning are fully impacted. Time change for bathing and by instruction only before they do only one instruction but now do according to their will "Log kam milte hain to baat he nahi hoti sab ghar per he hain ya emergency mein he nikal rahe hain" Koi kisi ka haal bahi pocuh raha hai.School routine mein busy the to behavior controlled tha lekin aab ghar ke chezzo ko fanke rahi hain. Ration late mila and father delhi job karte hai to aab nahi ja rahe hai , kewal march ke salary mile hai and april ke salary ka pata nahi hai. Aur future mein job jane ka bhe dar hai Ration time per milna chaye and kuch scheme ya money milne chaye or source of income hona chaye Ration time per milna chaye and kuch scheme ya money milne chaye or source of income hona chaye jo sabka guzara ho jaye. "Job ka stress hai aur village ke koi update nahi milte and koi sukh dukh bantne ke liye nahi milta" Stress of losing job,no update of village and no one is met to share feelings and emotions Yes. I used to go to Sainik Farm and AADI. Now I am not able to go. No. I used to go to meet my sister. But now i speak to her via video call. No. One should continue to get money. There should be no hardship due to money. All persons with disabilities must get all the services at home only. People are scared to go out. There should be an alternative to going to Bank also. Once he had become very aggressive and hurt our mother. He has become quieter. Self talk has increased. He has started repeating same question more often. Yes. I used to go to work. Now I can't. I feel bad that I am not able to meet my friends at work. No. We wanted to help others if there was a way to do it. My husband is already supporting by providing food to the needy. Some dedicated number or group should be there which will immediately provide support to persons with disabilities and their families in need at their home. Be it He has become very irritable because he is not able to meet his friends and also his father. His father is required to go out for work hence he keeps himself distanced from other 90 for food, medicine, money or anything else. family members. Yes, irregularities in sleeping time, getting bored at home. Before lockdown, PwD was going for internship placement regularly. So, sleep cycle was consistent and had a schedule for the day but now it has been disturbed. Sometimes have to get up early for harvesting fields and sometimes waking up time gets shifted if there is no work next day. Watching movies late night results in delayed waking up. No one visited earlier also especially to meet PwD or help him with his work. He goes out to meet relatives in the village like before. Lockdown has not impacted his visits to relatives place. PwD might had faced problem with mother but could not say it as she was sitting in front of him while doing the telephonic interview. Interviewer sensed it and when probed again he said‐ "Waisa hi hai sab kuch." If I could go back to the shop where I joined for my internship recently. I was enjoying the work and had a routine then suddenly this lockdown happened. Shops should be open. Whatever I have learned till date in the internship, I might forget those skills and had to start a fresh again.Work place should be open so that I could learn and practice my skills more. After lockdown, if I do not get the job back that is worrying me. PwD answered " sab theek hai ji..." with a different tone.He did not share much but interviewer could sense some uneasiness in his tone. As if he wanted to say something but couldn't, may be there were people around him. It is same as before.He stays at home most of the time and needs instructions to perform most of the tasks. Neighbours visit his place. They sit together and chat. Although, He speaks less with them but enjoys their company. Neighbors are still coming and he is meeting other people also in village same as before. No compatibility issues. He does not interfere in the household matter. He has his own space outside the house where he spends his most of the time. Neighbours also sit with him there. They are not impacted by lockdown as their life routine is still the same and things are also available as before. In village also, everyone is leading the same life as before. Nothing has changed. Caregiver‐ No issues as such but fears about the health of PwDs elder brother as he continues to go out for work outside village. Outside village it is not safe, there are so many cases of this disease. She used to go to class in afternoon and now she is at home only so routine has changed She has friends. she is not able to meet them so she gets angry yes Anger is increasing. Doing a lot of fighting with siblings His routine is same as before as he was not working or studying It is not causing any difficulty No This disease is dangerous. Remedy for Financial aid might be We are afraid of this disease. 91 anywhere before lockdown. because no friends and relatives visited before and its almost similar after lockdown also. this disease, as it will affects our life. It should get over soon. required at a later stage. 92 Changes Reasons for change Difficulties Suggestions Mother gives less food Fear of rations finishing Money crunch Rations from government Cannot get food from outside, like samosa Shop is closed Misses outside food None gets limited vegetables to eat ,doesn’t have variety in food, not getting nonveg to eat. have to eat home made food only 1)There are two hours fixed for putting up stall of vegetables in market (5 to 7 in the evening) 2)nonveg shops are closed 3)shortage of money 1)Can't go out to have outside food 2) doesn’t have money to spend on food food stalls should be available for all public. Timings of putting up stalls in the market should be extended. "Adhik khaya ja raha hai and baar baar kha rahe hain to weight increased ho raha hai aur exercise and movement hai nahi." No fixed routine and "sab ghar per hain kuch na kuch banta he rahata hai kisi na kisi ke kahane per" weight increased ho raha hai aur exercise and movement hai nahi. "Job per jounga to sab teek ho jayega" When I will go to work all is correct. Less food Mother controls food Fear of ration supplies finishing Register on Delhi govt e coupon site, stay in touch some times due to late breakfast Due to late breakfast 93 lunch gets skip. Fruit is not include in food and quantity of vegetables also little in meals Father is a vegetable seller but now days they are not gone to their business place because of not availability of public transport and not having their own vehicle and the other grocery items are also costly so not purchased "Phale khud ka kaam vegtabale ka tha to koi pareshani fruit and vegetabel ke nhai the lekin aab income stop hai aur sec‐3 bhe nahi ja rahe hain to fruit to hai nahi aur vegetable pahle 2 time banti the aab kewal i waqat banti hai aur pura din khate hain." Market mein grocery item ke cost bhe increased hai jis ke karan bhe purchase nahi kar rahe hain 1 Nutrition diet is the difficulty 2 Father is a vegetable seller but now days they are not gone to their business place because of not availability of public transport and not having their own vehicle 1.For nutrition Government will provide some other food supplements which compensate fruits and vegetables 2 .Some public transport is available to all places or some other facilities to run business. Also provide some financial support like person of us who have lack of resources Nothing has changed in the diet or pattern. None of the working family members including PwD has recieved their salaries. It is troubling them, "Salary nahi aayi hai aur abhi udhaar par sab saaman aa raha hai." If salary would have been cleared in time, that would have been of help. NA NA NA NA Eat more and frequently There is no fixed routine and stayed at home more time and food items are also in reach Weight can increased due to no playing activities and stayed more at home Some physical activities and no change in routine Nutrition may be impacted because purchased vegetables in small quantity and according to need and there is no fruit in food. NO. 94 As of now it is same as before. We have arranged things for the month of April but May will be difficult as we have not received salaries and pension money. We are borrowing and do not know till when the shopkeeper will give things without money. Salary clearance on time would give us some respite and it would be easy for us to manage household stuff. Nutrition may be impacted because purchased vegetables in small quantities and according to need and there is no fruit in food. No difference is there in food as everything is available in the village. Comments‐ They have cattle at home so milk & milk product is meant for home consumption. They have a kitchen garden in the same plot which PwD helps out in managing & protecting with the family members. they get some vegetables from there and rest the caregiver buys while coming back home. No,it is same as before. We have arranged things for the month of April but May will be difficult as we have not received salaries and pension money. We are borrowing and do not know how long shopkeepers will lend us goods without money. Timely salary clearance will be a great relief and it will be easier for us to manage household goods. 95 How are you managing household expenditure? Savings/ Borrowings/ borrowings on interest/ sale of assets? Are you able to work from home during lock down period ? Any specific comments If No how are you currently occupied? List difficulties in performing the same ? Are there any fears for future regarding employment post lock down? Comments if any If yes, list them Are there any specific suggestions or difficulties you wish to mention regarding finances/ employment? Bank se nikaal kar ghar ka kharcha chalaa rahe hain, pita ko bhi old age pension mil rahi hai No Madad karta hoon khar ke kaam main, TV dekhta hoon Jab khulega tab pataa chalega ki paisa milega ya nahin Person does not know if banking is possible or not. His father goes to buy the daily essentials they need. For Question about schemes he asked his father and answered. NA NA NA NA NA savings and disability pension.Though bank opens for short duration and there was a long queue for withdrawal money .(shared by brother ) No 1) Support to mother and sister while doing household chores like making tea, mopping floor,, washing his clothes and utensils . 2) Gets bored while doing household work supporting family members while doing household chores. yes post lockdown will business be run like before. labours should not be allowed to go back to their villages as work will not be possible without them "Father ko lakar pension and salary deta hun aur father he ghar ka expenditure manage karte hain. kabhi kabhi mein bus koi saman la deta hun."Last month I received the salary and next month I am No In domestic work like dusting, cleaning, small shopping. “Ghar mein time pass karna bahut he muskil ho raha hai. Sara din he koi ghar me kaam karta hun Yes "Manager ka papa ke pass phone aaya tha ke kanhi aur mat lagana factory open hote he hum ashok ko bula lange per pata kuch nahi hai agar work na "Job aur kaam regular milan chaye taki sare kaam chal jaye" 96 not certain then facing a problem. baki time to akela he baitha rahata haun” mila to mushkil ho jayegi kyuke son ka 9th class mein admission hona hai to fess ke piase nahi honge agar salary nhi aayi aur job nahi mile to." Kheti ka kaam hai, toh chal rahaa hai Ghar ka kaam karati hai, kheti mai madad karati hai aur silaai bhi seekh rahi hai Yes, Pita ne jabab diya Abhi tak jo paisa ghar mai aa rahaa tha , usamai kami ho gai hai, khana peena chal jaata hai Paise se madad honi chahiye Savings NA from saving No i do support mother in domestic at home. Play board games with my family. yes I think, will forget all the work I had learned in the factory. I have to learn all over again According to father, income and pension of dinesh are the main source of income and used to manage household expenditure. But In lock down no income of father only dinesh pension and some savings support. Father has no infomation regarding mother's jandhan schemes. “ Dinesh ke pension and mere income se daily ke routine expenditure ho rahe the lekin aab is month to dinesh ke pension ke hai. Mother ke jandhan account mein koi amout submit hua Dinesh ghar ke ek do kaam karta hai koi saman rakhan bus. Nahi to mobile mein laga rahata hai pura dina ya TV dekta hai. Bhar jata nahi hai. "Father ke according mere income regular ho jaye to ghar chal jayega nahi to mushil hogi. Kewal ration milne se bhe to kaam nahi chalega aur kaab tak baccho ke education, clothes, kahna sab routin unbalane ho gaya" Pre vocational training is delayed due to lock down 97 hai hume koi jankari nahi.” Any family member goes with dinesh to the bank for withdrawing pension and other banking work. Mobile and TV used whole time so required recharged frequently in these days By selling milks, utilising salaries (feb 2020) of working members and utilising pension of other siblings who are Pwds. So combining all three has helped them to get through till date. From next month it is going to be difficult. They use aadhar cards to draw pension money. No Helps in carrying food for cattle from the field. After getting free from his daily living activities he mostly sits alone and does some household jobs when asked. No difficulties faced. Yes, uncertainty of loosing the job after lockdown. 1. PwD's Salary for the month of March 2020 got stuck and unsure about getting it cleared. 2. Again, caregiver has to place efforts in arranging the job for PwD. searching job for PwD is tedious. 3. Financial burden will also increase as the PwD doesn't have any pension also. PwD's Salary for the month of March 2020 got stuck and unsure about getting it cleared. They have not heard any communication from the employer regarding this. From father's salary. No,he is not having any employment at present.Father is working and he goes to duty on alternate days. Plays indoor games with siblings,helps his sister in cooking like preparing "chhle bhature,somose,daal bade" etc.using his skills which he has learnt in AADI. No fears,but he wants to have some employment in future. Any work in AADI or outside keeping his abilities in mind. No I help mother in kitchen. If any work was given to us to do at home , it I help my mother in all the household chores. Yes. Just that it should all finish now. No. 98 would have been better. Using existing money and father has borrowed from his brother Not applicable to him Borrowing Family member responded‐ Bank se nikaal kar ghar ka kharcha chalaa rahe hain, pita ko bhi old age pension mil rahi hai No Madad karta hoon khar ke kaam main, TV dekhta hoon Jab khulega tab pataa chalega ki paisa milega ya nahin Family member responded‐ Bank se nikaal kar ghar ka kharcha chalaa rahe hain, pita ko bhi pension milati hai No Madad karta hoon kapade daalne main, safaai main, TV dekh leta hoon Dekho jab kulega tab pataa chalega ki paise milenge "Grandmother ke govt pension and mere disablity pension se ghar ka daily expenditure ho raha hai. lekin is month pension ka message nahi aaya aur bank wale bata nahi rahe kyuke staff short hai." "Domestic work and grand mother ke care mein he sara din busy rahata hun aur jab time milta hai to TV dekkta hun." Father bears all expenditure from his salary and also income from agriculture. Ghar mein cattle caring and agriculture mein support kar rahe hain. supervision kar rahe hain agriculture Labour and watching TV and Mobile From father's salary and saving se ghar chal raha abhi tak to.Lekin next month problem ho jayegi kyuke april mein to job per gaye nahi. Ghar kaise chalege? Watching TV and doing domestic work Yes Father ko apni job ke lekar "Father ko job mil jaye to ghar mein pareshani nahi hogi." 99 Scholarship se bhe support ho raha hai. From my pension and my husband's FDs No She cleans and mos, cuts vegetables and rolles rotis. No My only fear is that finances are decreasing how will we able manage in long run. We both are old. Borrowing, By selling milks, utilising salaries (feb 2020) of working members and utilising pension of other siblings who are Pwds. So combining all three has helped them to get through till date. From next month it is going to be difficult. They use aadhar cards to draw pension money. From father's salary and saving se ghar chal raha abhi tak to.Lekin next month problem ho jayegi kyuke april mein to job per gaye nahi. Ghar kaise chalege? Scholarship se bhe support ho raha hai. Watching TV and doing domestic work Father ko apni job ke lekar Yes "Father ko job mil jaye to ghar mein pareshani nahi hogi." With brother's pension and one of my sisters supporting us financially. No. Can't go my place of work. I wash my clothes and dry them. Peel potatoes. Bring things required from 1st floor to ground floor. I watch TV. Yes. If the lockdown continues I will have no money No. My parents manage. No. I support my mother in household chores like cleaning bathroom, drying clothes, keeping utensils in rack. I also watch youtube for tabla practice No. No. 100 and for listening to music. They have enough and need not monetary support. He did not withdraw his money, as it was not required. Source of income‐ Father's salary, brother's income, PwD's internship money, by selling milk and utilising wheat from their fields. No, for managing work of a shop one has to be physically present there. It is more of organising material in the shop and dealing customers. due to lockdown all shops are closed. Engaged with work related to household (cooking rice and making evening tea), cattle rearing (managing food for cattle, bathing them etc) ; helping family members with harvesting wheat from the fields. Yes, Unsure and worried about his internship placement. The employer had started trusted him with dealing customers now post lockdown not sure about his attitude. He has to start all over again. Unsure and worried about his internship placement.Fear of loosing learned skills like customer dealing and managing stuff at the shop. If shops could be reopened. I could join back. My mood gets lifted when I am out and learning. I would have practiced my skills and continued with the work effectively. Earning of PwD's brother, a small portion of land and farming, kitchen garden, cattle's milk is sufficient to take care of essential needs at home. PwD smokes beedi, it has become expensive. PwDs brother buy the beedi bundle in bulk for him. PwD earns a little and he also spends his own earning on the beedi & small snacks(Namkeen) for himself. No Cattle rearing, managing kitchen garden,watching T.V, talking to kids at home. spending time with neighbors and lying outside home. Sometimes he gets engaged in the labour work within the village whenever he feels like working. He is not facing any difficulty performing the same. No No Ruchika's father is in government job so they don't have any constraints Not aaplicable No Borrowing from shopkeeper , By selling milk, utilizing salaries (Feb 2020) of working members and utilising pension of other siblings who are PwDs. so combining all three Managing Finances will become tight if the salaries won't get released on time. 101 has helped them to get through till date. from next month it will be difficult. they use adhaar card to draw pension money. 102 3. Mental Illness Total of 31 cases were interviewed Gender Do the PwDs have a disability Certificate? How many members are there in your home? Have you ever attended School? Highest Education Are you aware of covid 19 and pandemic now? Female‐11 Yes‐15 Youngest‐3 Yes‐28 Primary‐7 Yes‐24 Male ‐20 No‐ 16 Oldest‐18 No‐3 High School‐4 Not fully‐5 Average‐5 Secondary‐4 University/ College‐4 Disability Certificate Yes No 103 Do you know where to go/whom to contact if you are unwell with cold, cough or fever? Have you suffered any health problem in the past two weeks? Are you facing difficulties when you don’t meet your friends during the lock down period? Are you facing difficulties with leisure, recreational activities outside being curtailed In the last 3weeks, have you noticed a change in your mood? Have you felt sad? Have you felt irritated? Have you felt extremely happy? Yes‐26 Yes‐8 Yes‐6 Yes‐17 Yes‐21 Yes‐15 Yes‐19 Yes‐3 No‐5 No‐23 No‐25 No‐14 No‐10 No‐16 No‐12 No‐28 Felt Sad? Yes No Felt Irritated Yes No 104 Have you lost interest in things that I used to do? Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Have you had multiple pains and aches without a reason Have you had poor digestion for without a reason Have you had irregular bowel habits Have you felt anxious? Yes‐6 Yes‐9 Yes‐4 Yes‐7 Yes‐3 Yes‐3 Yes‐3 Yes‐12 No‐25 No‐22 No‐27 No‐24 No‐28 No‐28 No‐28 No‐19 Have you felt worried? Have you felt restless? Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? Is there any change in the appetite? Is there any change in your food/eating pattern/habit because of lockdown? Do you have a problem in procuring essential supplies for your daily living? Do you need a caregiver? Yes‐15 Yes‐16 Yes‐8 Yes‐11 Yes‐6 Yes‐10 Yes‐5 Yes‐5 No‐16 No‐15 No‐23 No‐20 No‐25 No‐21 No‐26 No‐20 Felt Restless Yes No 105 Is the caregiver able to continue services to PwDs as before lockdown ? Is there any change? Does the caregiver have all necessary informatio n on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)t o PwDs? Does the caregiver have access to all materials required for preventio n of COVID? (mask, sanitizer, gloves, hand wash etc) Are all member s of the family with you during this lockdow n If Yes, are you happy? Are there any problem s Do you have any fears/worrie s in the current family situation? Yes‐10 Yes‐3 Yes‐12 Yes‐11 Yes‐30 Yes‐28 Yes‐10 Yes‐6 No‐3 No‐7 No‐2 No‐1 No‐3 No‐20 No‐24 Felt Worried Yes No 106 Have you got any money from schemes/ subsidies? (Pension/ scholarship/ jandhan etc.) Are you able to access your money from Bank/ ATM/ Paytm/ Online transactions etc How are you managing household expenditure? Savings/ Borrowings/ borrowings on interest/ sale of assets? Is there a difference in the management of activities of daily living during lock down period ( bathing, grooming, eating, basic transfers, toileting, dressing/undressing etc ) Is there a difference in the management of domestic and other activities( Instrumental activities of daily living) eg: Shopping, housekeeping, managing money, food preparation etc ) Do you take any regular medicine? Do you have any other medical needs? Do you have access to general or emergency medical services if required? ( fracture / severe diarrhoea/ burn/ pressure sores etc.) Yes‐6 Yes‐17 Yes‐12 Yes‐24 Yes‐26 Yes‐5 Yes‐24 No‐24 No‐2 No‐19 No‐7 No‐5 No‐26 No‐ 6 Not applicable‐ 12 107 Do you know any person in your vicinity (self, family, neighbours etc.) affected by COVID 19? Have you tried to contact your doctor in the past 3 weeks? Have you been able to meet or talk to your doctor in the past 3 weeks Have you been able to get a regular supply of your medicines in the past days? Yes‐1 Yes‐10 Yes‐5 Yes‐23 No‐30 No‐21 No‐20 No‐3 4. Thalassemia Age Male/Female Disability Certificate? Own‐45 Oldest‐32 Male‐36 Yes‐48 Own‐45 Youngest‐19 Female‐36 No‐24 Rented‐27 Average‐24 Do you live alone or with Family? at home? Highest Education Are you aware of covid 19 and pandemic now? Modes of information about covid19 With family‐72 H‐school‐21 Yes‐72 All‐72 Secondary‐8 Disability Certificate yes no 108 University‐43 What preventive measures should be taken Do you know where to go/whom to contact if you are unwell with cold, cough or fever? Have you suffered any health problem in the past two weeks? Are you facing difficulties with leisure, recreational activities outside being curtailed Some of these‐72 Yes‐72 No‐72 No‐72 In the last 3weeks, have you noticed a change in your mood? Have you felt sad? Have you felt irritated? Have you felt extremely happy? Yes‐72 Yes‐46 Yes‐31 Yes‐10 No‐26 No‐41 No‐61 Education High School Secondary University 109 Have you felt sad Yes no Have you felt Irritated yes no Have you lost interest in things that I used to do? Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Yes‐30 Yes‐30 Yes‐22 Yes‐29 No‐42 No‐42 No‐50 No‐43 110 Have you had multiple pains and aches without a reason Have you had poor digestion for without a reason Have you had irregular bowel habits Have you felt anxious? Yes‐25 Yes‐25 Yes‐16 Yes‐22 No‐47 No‐47 No‐56 No‐50 Have you felt worried? Have you felt restless? Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? Yes‐22 Yes‐25 Yes‐21 Yes‐57 No‐50 No‐47 No‐51 No‐20 1.2 If Yes, is it less or more? Is there any change in the appetite? If yes, is it less or more? Do you have a problem in procuring essential supplies for your daily living? More‐35 Yes‐15 More‐12 Yes‐10 Less‐11 No‐57 Less‐3 No‐62 Disturb‐1 N/A‐57 No‐15 Lost interest in things that I used to do? Yes No 111 Do you need a caregiver? Full time/ part time/ occasionally? What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwDs/Caregiver Are all members of the family with you during this lockdown If Yes, are you happy? Yes‐1 No‐72 Yes‐67 Yes‐64 Occasionally‐6 No‐5 No‐8 Part time‐2 No‐60 Are there any problems Do you have any fears/worries in the current family situation? Your child has a birth defect, has the treatment started ? Is your child using any assistive aids (braces)? Is there any problem in getting that or repairing that or changing that? Yes‐13 Yes‐32 Yes‐72 No‐72 No‐59 No‐2 Was any surgery planned, what was the surgery planned and how has the lockdown affected it? What in your opinion could have been done to reduce the difficulties? No‐72 Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown yes one of my friend came to donate blood Yes because every work is stop in lockdown Give them food because its an maser issue 112 Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown yes my uncle came to meet and donate blood blood provide blood yes my friend came to donate blood No issues Less blood yes one of relative came to donate blood blood proper blood facilities No No issues arranging donar No blood provide blood/Transport yes one of relative came to donate blood Transport special buses and paases yes my friend came to donate blood donar issue provide blood yes one of relative came to donate blood No issues provide donar No donar issue want hepl for searching donar yes of of friend came to donate blood Transport provide transport yes one of relative came to donate blood donar issue More aware of covid yes my friend came to donate blood donar/transport provide blood/Transport yes of of friend came to donate blood No issues provide donar yes of of friend came to donate blood low Hb provide blood yes one of my friend came to donate blood No issues provide blood yes my uncle came to meet and donate blood donar issue donar refuse to visit hospital Papa friend came to donate blood Blood need proper support from BB no money issue No 113 Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown yes one of relative came to donate blood no blood, BB requires donar arranging donar yes my friend came to donate blood arranging donar proper blood facilities yes of of friend came to donate blood donar issue donar refuse to visit hospital yes one of my friend came to donate blood No issues provide essential goods and medicines no arranging donar provide blood in sufficient amout yes my friend came to donate blood donar issue provide blood and transport yes one of relative came to donate blood no donar provide blood and transport yes facebook friend came to donate blood arranging donar BB should provide blood as we need every 15 day yes facebook friend came to donate blood arranging donar BB should provide blood as we need every 15 day yes my uncle came to meet and donate blood arranging donar provide blood and donar yes my friend came to donate blood BB not ready to give blood should provide blood and online helpdesk to search donar no arranging donar provide blood without donar no arranging donar/ no one wants to visit hospital provide blood no no help required no help required yes my friend came to donate blood No bB should provide blood no No transport issue to visit hospital yes one of relative came to donate blood arranging donar arranging donar yes facebook friend came to donate blood arranging blood provide blood yes my friend came to donate blood donar issue providing blood will be sufficient 114 Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown yes one of relative came to donate blood financial issue should provide blood and proper treatment without wasting time yes one of relative came to donate blood No blood BB not giving blood no unavaliblity of things to be more vigilant yes my uncle came to meet and donate blood arranging blood BB should provide blood to such patients yes my friend came to donate blood arranging donar provide sufficient blood no arranging donar should help the needy person yes one of my friend came to donate blood arranging donar provide blood as we are thalassemia persons yes one of relative came to donate blood arranging donar by providing sufficient amout of blood no arrranging donar main task providing blood will be sufficient yes one of relative came to donate blood due to lockdown no one agrees to visit hospital red cross should provide blood yes facebook friend came to donate blood due to BT of only 1 unit have to visit hospital frequently requested on social media to donate blood yes my uncle came to meet and donate blood we are thalassemia patients need blood to live provide blood no arranging donar provide sufficient blood so that visit hospital frequently can be avoided yes one of my friend came to donate blood Donar provide blood yes one of relative came to donate blood no donar wants to visit hospital provide blood without donar yes one of my friend came to donate blood BB not ready to give blood provide sufficient amout of blood due to shortage of blood Hb goes down Yes arranging donar provide blood in sufficient amout no financial issue provide sufficient amout of blood due to shortage of blood Hb goes down 115 Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown yes one of my friend came to donate blood arranging blood main issue management should take some initiative for fulfilling the blood requirement to the persons yes of of friend came to donate blood arranging donar there should be an online portal to connect the patients and blood doner yes one of relative came to donate blood arranging blood govt should take initiative to fulfil blood demand yes my friend came to donate blood arranging blood arranging donar, medical facilities yes one of relative came to donate blood arranging donar should have invented an app to reach to donar yes one of relative came to donate blood not able to arrange donar govt should take initiative to encourage blood donations yes one of relative came to donate blood facing problem in getting blood yes dad is not able to arrange donar yes one of my friend came to donate blood arranging blood provide sifficient blood no donar issue blood not available in bb yes my friend came to donate blood donar issue need blood transfusion every 2 week yes my uncle came to meet and donate blood No No yes of of friend came to donate blood difficulties in BT as no donation govt should provide proper facilities for BT no donar issue provide blood yes my friend came to donate blood difficulties in BT as no donation govt should provide proper facilities for BT yes one of relative came to donate blood arranging donar No yes my friend came to donate blood blood provide blood and transport 116 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? Do a servey in any home and know who is in problems Yes but main issue is food No help in arranging blood Sad Sad should take precaution emotion issues emotion issues arranging donar and transport negativity increased negativity increased provide blood and conform before coming No No facing problem in arranging donar should provide blood feeling sad feeling sad should provide transport and blood stressed due to lockdown stressed due to lockdown provide blood without donar as no body is ready to donate relatives refuse to donate blood relatives refuse to donate blood provide sufficient amout of blood without donar No No provide blood as no one is ready to donate No No provide transport and blood yes little sad yes little sad provide blood and transport if possible NO NO no one is ready to donate kindly provide blood without donar No No provide blood without donar as no body is ready to donate No No should provide transport and blood little sad and negative little sad and negative social distance No No provide blood without donar as no body is ready to donate No No Should provide sufficient amout of blood No No provide blood because no donation No No should have stored sufficient blood so that we were not facing deficulty little sad and negative little sad and negative provide transport and blood feeling Disturbed feeling Disturbed provide sufficient amout of blood without donar No No provide donar and blood No No provide transport and blood Depressed Depressed 117 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? should provide blood to thalassemia patient without blood they will die Sad Sad provide donar and blood as Hb goes down very fastly No No provide a proper channel to approach donar feeling sad feeling sad provide blood and transport if possible feeling sad feeling sad support by providing blood low feeling low feeling provide blood without donar as no body is ready to donate sad due to low Hb sad due to low Hb help such families by providing blood Sad Sad sufficient amount of blood should be provided sad and feeling low sad and feeling low help such families to visit hospital No No provide sufficient amout of blood to avoid frequent hospital visit little sad and negative little sad and negative should arrange transport and blood for thalassemia persons No No provide blood and transport will hepl us low feeling low feeling such families faces dificulty in arranging donar hepl them No No should help such families by providing proper treatment and blood not happy due to low Hb not happy due to low Hb should provide donar and sufficient amount of blood not meeting friends feeling sad not meeting friends feeling sad should provide blood to thalassemia patient without blood they will die little sad and negative little sad and negative should be provided transport facilities yes, is scare of disease yes, is scare of disease govt should provide a platform from which such families can directly contact to willing donar No No should have stored sufficient blood so that we were not facing deficulty little sad and scared of covid little sad and scared of covid food/rental issue/transport Sad Sad BB should arrange blood for such families No No BB should arrange blood for such families No No this is a bad phase for everyone so we can hepl each other little sad little sad 118 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? All BB should cooperate to such families as no one is there to hepl Sad Sad BB should arrange blood for such families so they don’t have to beg for the blood feeling low due to less Hb feeling low due to less Hb do not ask for donation in such situation No No govt must have proper storage of before announcing lockdown sometimes very low feeling sometimes very low feeling should not ask for donar yes sad no work yes sad no work should not force to bring donar little sad little sad BB should not ask for donar as during this lockdown no one wants to donate not feeling happy as not meeting to friends not feeling happy as not meeting to friends should have proper plateform from which such families can get help in arranging donar not going out not going out should help by providing comlete information by providing proper channel to contact donar Sad Sad should be help desk for providing support to the persons and such families Yes Yes should be help desk for providing support to the persons and such families feeling irritating at some time feeling irritating at some time blood should be made available in BB felling emotionaly low felling emotionaly low financial and emotional support practicing social distancing not able to meet friends practicing social distancing not able to meet friends BB should provide blood withoud asking donar feeling sad feeling sad should be common portal to reach to donar feeling low because not able to find donar feeling low because not able to find donar increse no of covid test, organise blood donation camp sad becaiuse no one wants to listen problms sad becaiuse no one wants to listen problms provide blood sad Sad provide transport and blood sad Sad help by providing blood feeling low feeling low no one is ready to donate kindly provide blood without donar no No disabled person should provide more care not meet friends since 2 months not meet friends since 2 months provide blood sad Sad should provide transport and blood feeling low feeling low 119 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? should help by providing comlete information by providing proper channel to contact donar yes Yes facing problem in arranging donar should provide blood feeling Disturbed yes little sad 120 5. Deaf and hard of Hearing Deaf Total persons interviewed 77 Age Do you have disability Certificate? 2. Do you live alone or with Family? 4. Have you ever attended School? Yes – 71 With Alone‐4 Yes – 66 Oldest – 50 No – 6 With family – 73 No‐9 Youngest – 21 Average – 31 8. What preventive measures should be taken 9. Do you know where to go/whom to contact if you are unwell with cold, cough or fever? 10. Have you suffered any health problem in the past two weeks? 11. If yes, describe what care you got All of these ‐ 32 Yes‐46 Yes – 2 Yes – 10 Using soap ‐ 8 No‐ 29 No‐73 No ‐2 Using Mask ‐5 Disability Certificare Yes No Attended School yes no 121 Social distancing ‐ 30 12. Has your daily routine changed? If yes, explain 13. Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? 15. Have you or your care‐giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. 16. What do you feel should have been done to help people like you during the lockdown Yes‐ 18 Yes – 10 Yes ‐4 Emergency helpline ‐2 No ‐15 No‐ 18 No‐20 Instructions & help for deaf persons‐2 Walking & exercise‐ 4 Sometimes – 1 Not able to take grandma to hospital Provisions and accessibility ‐ 4 Cleaning of road ‐1 Not able to meet ‐3 No job so no income‐1 Would like to volunteer ‐2 Knows where to go if unwell Yes No Daily Routine Changed? Yes No 122 17. What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? 18. Are there any social, emotional or psychological issues that you are facing that you wish to mention? 19. Are you facing difficulties when you don’t meet your friends during the lock down period? 20. List the difficulties, if so More awareness on govid 19 ‐2 Yes ‐2 Yes ‐17 Not able to share worries & happiness ‐2 Manage work at home ‐2 No‐20 No ‐43 Communication issues, emotional problem‐ 2 Bored ‐1 No subtitles & interpreter for deaf ‐2 Anxiety & depressed ‐2 No travelling‐1 Stressfull being at home ‐1 Presuure going to work ‐1 21. Are you facing difficulties with leisure, recreational activities outside being curtailed 22. If so, list them 23. What was your worst experience during the lockdown? 25. In the last 3weeks, have you noticed a change in your mood? Yes ‐15 Lack of subtitles in news & movies‐2 Less sleep – 1 Yes ‐16 No ‐40 Children are having difficulty ‐2 Not able to go out‐1 No ‐44 No shops open near me ‐1 Problems when you don’t meet your friends Yes No 123 Police shouted at my husband in shop to go home‐1 Lack of information from govt.for deaf‐1 Power cut ‐1 26. Have you felt sad? 27. Have you felt irritated? 28. Have you felt extremely happy? 29. Have you lost interest in things that I used to do? Yes ‐16 Yes ‐6 Yes ‐33 Yes ‐15 No ‐47 No ‐51 No ‐26 No ‐44 30. Do you find it difficult to enjoy? 31. Are you always thinking negatively? 32. Have you felt tired or fatigued for no good reason? 33. Have you had multiple pains and aches without a reason Yes ‐23 Yes ‐43 Yes ‐13 Yes ‐8 No ‐37 No‐4 No ‐49 No ‐52 34. Have you had poor digestion for without a reason 35. Have you had irregular bowel habits 36. Have you felt anxious? 37. Have you felt worried? Yes ‐7 Yes ‐5 Yes ‐6 Yes ‐5 Felt Sad? Yes No Thinking Negatively Yes No 124 No ‐54 No ‐54 No ‐51 No‐ 59 38. Have you felt restless? 39. Have you had a sense of panic/ ghabrahat? 40. Is there any change in your sleep pattern? 41. If Yes, is it less or more? Yes ‐13 Yes ‐4 Yes ‐20 Less ‐39 No ‐48 No ‐54 No ‐44 More – 25 42. Is there any change in your food/eating pattern/habit because of lockdown? 44. Changes 45. Reasons for change 46.Difficulties Yes ‐28 Cooking less ‐2 Non availability of essential items‐4 Unable to travel far to shops‐1 No ‐31 Only 2 meals a day ‐2 Non availability of essnetial items ‐2 Eating more salads‐1 High price on food items – 1 Late eating ‐1 Worried for losing job ‐1 Felt Restless Yes No Change in Sleep Pattern Yes No 125 47. Suggestions 48. Do you have a problem in procuring essential supplies for your daily living? 49. If yes, list them 50. Do you need a caregiver? Full time/ part time/ occasionally/No? Interpret Tv news in subtitles‐1 Yes ‐6 Worried if hearing aid gets damaged ‐1 Occasionally ‐13 Open bakery for bread items ‐1 No ‐49 No non veg and vegetables ‐1 Full time ‐5 No transportation ‐2 Part time ‐13 No ‐36 51. Is there any change? 52. What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwDs/Caregiver 53. Is the caregiver from home or outside? 54. Is there any change? Yes ‐8 From home ‐33 Yes ‐7 No ‐37 Outside ‐8 No ‐30 56. Is the caregiver able to continue services to PwDs as before lockdown? 57. Is there any change? 58. What is the change? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwDs/Caregiver 59. Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) Yes ‐15 Yes ‐7 Techno park provided caregivers for us Yes ‐9 No ‐27 No ‐29 We cannot understand ministers speech No ‐17 Change in Food / eating pattern Yes No 126 RPwDs act must not PwDs act 61. Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? 62.What is the change required? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwDs/Caregiver 63. Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) 64. What is the change required? Reason for change? Difficulties because of change? Suggestions if any? Any other comments/ info provided by PwDs/Caregiver Yes ‐31 Accessibilty for deaf people Yes ‐35 Deaf whatsapp group No ‐8 No ‐8 Accessibilty for PwDs 65. Are all members of the family with you during this lockdown 66. If Yes, are you happy? 67. Are there any problems 68. If Yes, list them Yes ‐50 Yes ‐47 Yes 6 Mental suppoert ‐1 No ‐13 No ‐6 No ‐59 Lack of communication of government updates. 69. Do you have any fears/worries in the current family situation? 70. If Yes, list them How has the lock down affected your life with respect to Assistive device? How has the lock down affected your life with respect to Self‐Care? Yes ‐8 Brother and family are overseas in Kuwait Hearing aid battery difficult to get‐2 Cant access baber shop ‐1 No ‐52 Salary cut job timing ‐1 Away from home ‐1 Concern about parents health ‐1 How has the lock down affected your life with respect to Recreation? 2. In what all ways has people wearing Masks affected your communication?(facial expression, lipreading etc) 3. Have you been interacting with your friends and peer group? If less than or more than before, why? How are you doing it? 127 Yes ‐5 Due to mask difficult to lip read ‐22 Yes – 35 Communicate through whats app. Used gestures & typing on phones Less ‐18 4. Are you a student? If yes, how are you managing your studies? If you are having online classes, how do you rate them? 5. If employed, are you working from home? What are the challenges in working from home? Yes ‐10 Online classes 1 to 5 Difficult to understand online team meetings. 2 No ‐50 No space & equiptments for graphic designer ‐1 Power cut ‐1 Network problem ‐2 Whatsapp messages gets delayed responses‐1 Lack of accessibility at home ‐1 6. If you are a parent, and your child is less than five years, how are coping with speech therapy? Especially follow up of cochlear implant surgery for switch on and Audio Verbal Therapy (AVT)? 7. Would you like to make some suggestions to improve the situation faced by people like you lockdown period? 8. How do you think you could improve your access and awareness of what is happening? Percentage of loss My son cochlear implant and daughter earphone. Both children's Deaf. Emergency helpline Interpreter /sign language for news. 128 My parents teach my child TV subtitles ‐4 More subtiles on health & other issues on TV. Mental support ‐1 129 Hard of Hearing Children Total number of Children 251 Yes No Blank Not fully A little bit Moder ately Extre mely Not at all Quite a bit 4. Accomplished less than you would like 119 132 ‐ ‐ ‐ ‐ ‐ ‐ ‐ 5. Were limited in the kind of work or other activities 117 134 ‐ ‐ ‐ ‐ ‐ ‐ ‐ 6. Accomplished less than you would like 119 132 ‐ ‐ ‐ ‐ ‐ ‐ ‐ 7. Did work or activities less carefully than usual 107 145 ‐ ‐ ‐ ‐ ‐ ‐ ‐ 8. During the past 4 weeks, how much did pain interfere with your normal work (including work outside the home and housework)? ‐ ‐ ‐ ‐ 60 72 2 108 9 130 Yes No Blank Not fully A good bit of time Most of the time Some of the time None of the time All time A little of the time Male Female 4. Accomplished less than you would like 119 132 ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ 5. Were limited in the kind of work or other activities 117 134 ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ 6. Accomplished less than you would like 119 132 ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ 9. How much of the time during the past 4 weeks, have you felt calm & peaceful? ‐ ‐ ‐ ‐ 50 55 55 5 76 10 ‐ ‐ 10. How much of the time during the past 4 weeks, did you have a lot of energy? ‐ ‐ ‐ ‐ 65 54 60 3 62 7 ‐ ‐ 11. How much of the time during the past 4 weeks, have you felt down‐hearted and blue? ‐ ‐ ‐ ‐ 46 27 56 55 20 47 ‐ ‐ 12. During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting friends, relatives, etc.)? ‐ ‐ ‐ ‐ 44 29 64 58 17 29 ‐ ‐ Gender ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ 140 111 Do the PwDs have a disability Certificate? 230 21 ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ 131 Rented Owne d Blank Family Alone Blank No educa tion High school Primary Secondary University/ college Others Blank University Do you live in your own house or rented house? 40 209 2 ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ Do you live alone or with Family? at home? ‐ ‐ ‐ 242 8 1 ‐ ‐ ‐ ‐ ‐ ‐ ‐ ‐ Highest Education ‐ ‐ ‐ ‐ ‐ ‐ 5 54 4 70 64 20 4 29 Whose life matters? 132 Yes No Blank Not fully Do you live in your own house or rented house? 142 104 5 Are you aware of covid 19 and pandemic now? 220 8 1 22 Yes No Blank Not fully Do you live in your own house or rented house? 142 104 5 Do you know where to go/whom to contact if you are unwell with cold, cough or fever? 17 230 4 Have you suffered any health problem in the past two weeks? 64 168 19 Are you facing difficulties when you don’t meet your friends during the lock down period? 52 153 46 Are you facing difficulties with leisure, recreational activities outside being curtailed 61 174 16 In the last 3weeks, have you noticed a change in your mood? 55 145 51 Have you felt sad? 40 143 68 Have you felt irritated? 62 126 63 Have you felt extremely happy? 48 135 68 Have you lost interest in things that I used to do? 65 121 66 Do you find it difficult to enjoy? 34 157 61 Are you always thinking negatively? 43 141 67 Have you felt tired or fatigued for no good reason? 31 147 73 Have you had multiple pains and aches without a reason 27 155 69 Have you had poor digestion for without a reason 22 160 70 Have you had irregular bowel habits 28 151 72 Have you felt anxious? 31 156 64 Have you felt worried? 37 148 66 Have you felt restless? 36 142 73 Whose life matters? 133 Yes No Blank Not fully Have you had a sense of panic/ ghabrahat? 43 155 53 Is there any change in your sleep pattern? 1.2 If Yes, is it less or more? 71 156 24 Is there any change in your food/eating pattern/habit because of lockdown? 71 147 33 Do you have a problem in procuring essential supplies for your daily living? Do you need a caregiver? Full time/ part time/ occasionally? 24 159 68 Is there any change? Is the caregiver from home or outside? 23 164 64 Is there any change? 151 55 45 Is the caregiver able to continue services to PwDs as before lockdown? 33 156 62 Is there any change? 119 70 62 Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) 192 18 41 Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? 209 10 32 Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) 195 47 9 Are all members of the family with you during this lockdown 158 69 24 If Yes, are you happy? 22 215 14 Are there any problems 35 202 14 Do you have any fears/worries in the current family situation? 67 171 13 Are you a student? 58 118 77 Are you employed? Whose life matters? 134 6. Visually Impaired PwDs's Age Gender Do you have disability certificate Are you aware of covid 19 and pandemic now? Youngest‐8 Female‐14 Yes‐9 Yes‐ 31 Oldest‐93 Male ‐23 No‐28 Not fully‐6 Average‐54 Do you know where to go/whom to contact if you are unwell with cold, cough or fever? Have you suffered any health problem in the past two weeks? Has your daily routine changed? If yes, explain Are there any social, emotional or psychological issues that you are facing that you wish to mention? Yes‐28 Yes‐5 Yes‐10 Yes‐11 No‐ 9 No‐32 No‐ 26 Bno‐18 Are you facing difficulties when you don’t meet your friends during the lock down period? Are you facing difficulties with leisure, recreational activities outside being curtailed In the last 3weeks, have you noticed a change in your mood? Have you felt sad? Yes‐3 Yes‐5 Yes‐3 Yes‐18 No‐24 No‐19 No‐6 No‐17 Disability Certificate Yes No Whose life matters? 135 Have you felt irritated? Have you felt extremely happy? Have you lost interest in things that I used to do? Do you find it difficult to enjoy? Yes‐23 Yes‐5 Yes‐13 Yes‐15 No‐12 No‐30 No‐22 No‐20 Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Have you had multiple pains and aches without a reason Have you had poor digestion for without a reason Yes‐6 Yes‐11 Yes‐12 Yes‐11 No‐29 No‐24 No‐23 No‐24 Have you had irregular bowel habits Have you felt anxious? Have you felt worried? Have you felt restless? Yes‐10 Yes‐17 Yes‐22 Yes‐22 No‐24 No‐18 No‐13 No‐13 Have you felt Sad Yes No Have you felt Irritated Yes No Whose life matters? 136 Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? Is there any change in your food/eating pattern/habit because of lockdown? Do you have a problem in procuring essential supplies for your daily living? Yes‐11 Yes‐16 Yes‐9 Yes‐22 No‐24 No‐18 No‐13 No‐11 Is the caregiver from home or outside? Is the caregiver able to continue services to PwDs as before lockdown? Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? Home ‐25 Yes‐28 Yes‐23 Yes‐23 Outside‐1 No‐2 No‐8 Does the caregiver have access to all materials required for Availabil;ity of eye medicine Availability of Optical Aid Accessibility to eye care provider Felt Anxious Yes No Felt Worried Yer No Whose life matters? 137 prevention of COVID? (mask, sanitizer, gloves, hand wash etc) Yes‐32 Yes‐23 Yes‐12 Yes‐18 No‐3 No‐13 No‐7 Domiciliarly support availabl Replacement availibility Pain, redness, discharge… Yes‐16 Yes‐2 Yes‐1 No‐5 No‐18 No‐25 Whose life matters? 138 7. Hemiplegia/Stroke/CVA Total cases ‐ 21 PwDs's Age Gender Type of Disability Do the PwDs have a disability Certificate? Oldest ‐ 65 Male ‐ 12 Hemiplegia – 13 Yes‐ 15 Youngest ‐22 Female ‐ 9 CVA – 3 No – 6 Average ‐ 49 Stroke – 5 Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown Yes‐ 18 Yes‐ 4 Yes‐17 No‐ 1 No‐ 3 No ‐ 17 No‐ 4 Financial Support ‐ 13 No income ‐ 16 No income‐ 15 Food support ‐20 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? List the difficulties, if so Food Arrangements‐ 18 No‐ 16 Yes‐ 13 Cannot go out and see them‐ 13 Pension ‐ 1 Yes ‐ 5 No – 8 Home visits and giving food‐ 4 No income ‐ 5 Whose life matters? 139 Are you facing difficulties with leisure, recreational activities outside being curtailed If so, list them What was your worst experience during the lockdown? In the last 3weeks, have you noticed a change in your mood? Yes ‐ 15 Cannot go outside ‐12 Staying at home‐9/21 Yes ‐ 16/21 No – 6 Going out and Walking ‐2 Unable to go out for Treatment‐1 No‐ 5 Affected daily routine‐ 3 No food‐ 2 No income‐ 2 Have you felt sad? Have you felt irritated? Have you felt extremely happy? Have you lost interest in things that I used to do? Yes ‐ 16 Yes‐ 18 No – 20 Yes ‐ 1 No – 5 No‐3 Yes – 1 No‐20 Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Have you had multiple pains and aches without a reason Yes ‐1 No ‐ 21 Yes – 1 Yes ‐ 1 No ‐ 2‐ No – 20 No ‐ 20 Have you had poor digestion for without a reason Have you had irregular bowel habits Have you felt anxious? Have you felt worried? No – 21 No ‐21 Yes ‐ 17 No ‐4 Whose life matters? 140 Have you felt restless? Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? 1.2 If Yes, is it less or more? No – 21 No ‐ 21 Yes – 20 More Sleeping‐20 No‐ 1 Less Sleeping ‐ 1 Is there any change in your food/eating pattern/habit because of lockdown? Changes Reasons for change Do you have a problem in procuring essential supplies for your daily living? Yes‐ 18 More Eating‐ 2 Always at home ‐18 Yes ‐ 16 No‐ 3 Less Eating 19 Less activities – 3 No ‐5 If yes, list them Do you need a caregiver? Full time/ part time/ occasionally? If yes, full time/part time/ occasionally Is there any change? No income‐ 5 Yes ‐ 21 Full time – 4 No ‐ 21 No transport ‐ 9 Part time ‐17 No shops ‐10 Is the caregiver from home or outside? Is there any change? Is the caregiver able to continue services to PwDs as before lockdown? Is there any change? Home ‐ 21 No ‐ 21 Yes – 21 No ‐ 21 Whose life matters? 141 Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) Are all members of the family with you during this lockdown No – 21 Yes ‐ 21 Yes – 21 Yes ‐ 21 If Yes, are you happy? Are there any problems If Yes, list them Do you have any fears/worries in the current family situation? Yes ‐ 21 Yes ‐ 9 Yes ‐ 12 No‐ 12 Financial problem in family 9 No ‐ 9 If Yes, list them Your child has a birth defect, has the treatment started ? Lock down should end ‐ 12 No ‐ 12 8. Paraplegia/Myelomeningocoele/ Spinal cord Injury Total of 14 cases PwDs's Age Gender Type of Disability Do the PwDs have a disability Certificate? Oldest ‐ 62 Male ‐2 Yes ‐ 9 Youngest‐ 20 Female‐ 12 Praplegia – 14 No ‐ 5 Average ‐ 40 Whose life matters? 142 Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown No – 3 No ‐ 6 No – 5 Food ‐ 12 Yes ‐ 11 Yes ‐ 8 Yes – 6 Financial ‐ 10 No income – 3 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? List the difficulties, if so Food and financial support‐ 6 No‐ 9 Yes ‐8 Cannot go out ‐ 14 Home visit and food‐ 8 Yes‐ 5 No‐6 Are you facing difficulties with leisure, recreational activities outside being curtailed If so, list them What was your worst experience during the lockdown? In the last 3weeks, have you noticed a change in your mood? Yes ‐ 10 Cannot go out ‐ 13 Yes ‐13 No – 4 Go out for walking‐1 Aways at home – 11 No ‐1 No – 3 Have you felt sad? Have you felt irritated? Have you felt extremely happy? Have you lost interest in things that I used to do? Yes ‐ 13 Yes ‐ 11 Yes – 0 Yes ‐1 No – 1 No ‐ 3 No – 14 No ‐ 13 86% Whose life matters? 143 Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Have you had multiple pains and aches without a reason Yes – 0 No ‐14 Yes – 2 Yes ‐ 2 No – 14 No‐ 12 No‐ 12 Have you had poor digestion for without a reason Have you had irregular bowel habits Have you felt anxious? Have you felt worried? Yes – 2 Yes ‐ 2 Yes ‐11 Yes ‐ 11 No – 12 No ‐ 12 No – 3 No ‐ 3 Have you felt restless? Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? 1.2 If Yes, is it less or more? Yes ‐2 No‐ 14 Yes – 12 Less ‐1 No – 11 No – 2 More ‐ 13 Is there any change in your food/eating pattern/habit because of lockdown? Changes Reasons for change Do you have a problem in procuring essential supplies for your daily living? Yes – 8 Timing changed‐ 1 Less activity ‐7 Yes ‐ 12 No – 6 Less eating‐ 13 Not hungry – 1 No ‐2 If yes, list them Do you need a caregiver? Full time/ part time/ occasionally? If yes, full time/part time/ occasionally Is there any change? Shops closed ‐ 7 Yes ‐ 14 Part time – 10 No ‐ 14 No tranportation‐ 1 Full time – 4 No income ‐ 7 Is the caregiver from home or outside? Is there any change? Is the caregiver able to continue services to PwDs as before lockdown? Is there any change? Home ‐14 No ‐ 14 Yes – 14 No‐ 14 Whose life matters? 144 Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) Are all members of the family with you during this lockdown No – 14 Yes ‐ 14 Yes – 14 Yes ‐ 14 If Yes, are you happy? Are there any problems If Yes, list them Do you have any fears/worries in the current family situation? Yes ‐ 14 Yes ‐ 7 Financial problem‐7 Yes ‐11 No ‐ 7 No ‐3 If Yes, list them Your child has a birth defect, has the treatment started ? No income‐ 6 No – 14 When lock down will be over – 4 Whose life matters? 145 9. Amputations Total number of amputees (Including one upper limb) ‐ 9 PwDs's Age Gender Type of Disability Do the PwDs have a disability Certificate? Oldest ‐ 58 Male ‐ 4 Amputation – 9 Yes ‐9 Youngest ‐ 13 Female‐ 5 Average ‐ 40 Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown Yes‐ 9 Yes ‐2 Yes – 8 Food support ‐7 No income‐ 3 No‐ 7 No‐ 1 Financial help ‐ 6 Unemployment ‐1 No ‐1 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? List the difficulties, if so Food and financial support‐ 7 Yes‐ 5 Yes‐ 6 Cannot go out‐6 Home visit‐ 2 No‐ 3 No‐ 2 Are you facing difficulties with leisure, recreational activities outside being curtailed If so, list them What was your worst experience during the lockdown? In the last 3weeks, have you noticed a change in your mood? Yes – 7 Cannot go out ‐ 8 No food and income‐4 Yes‐8 Going out ‐1 No transportation‐1 No=1 Always at home‐4 Whose life matters? 146 Have you felt sad? Have you felt irritated? Have you felt extremely happy? Have you lost interest in things that I used to do? Yes – 8 Yes ‐ 8 No‐ 9 No‐9 No‐ 1 No ‐ 1 Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Have you had multiple pains and aches without a reason No‐9 No‐9 No‐9 No‐9 Have you had poor digestion for without a reason Have you had irregular bowel habits Have you felt anxious? Have you felt worried? No‐9 No‐9 Yes‐ 9 Yes ‐ 9 Have you felt restless? Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? 1.2 If Yes, is it less or more? No‐9 Yes‐1 Yes‐9 Less‐2 No‐8 More‐7 Is there any change in your food/eating pattern/habit because of lockdown? Changes Reasons for change Do you have a problem in procuring essential supplies for your daily living? Yes‐ 9 Timing changed‐ 3 No food‐ 2 Yes ‐ 9 Less eating ‐6 Not hungry – 2 Less activity‐ 4 No shops‐ 1 Whose life matters? 147 If yes, list them Do you need a caregiver? Full time/ part time/ occasionally? If yes, full time/part time/ occasionally Is there any change? No income‐6 Yes ‐9 Full time ‐2 No‐ 9 No transportation ‐ 3 Part time – 7 Is the caregiver from home or outside? Is there any change? Is the caregiver able to continue services to PwDs as before lockdown? Is there any change? Home ‐9 No ‐9 Yes‐9 No‐9 Does caregiver need any support to continue services to PwDs? (transportation/ division of labour etc.) Does the caregiver have all necessary information on COVID? (maintain social distance, washing hands, covering mouth while sneezing/ coughing)to PwDs? Does the caregiver have access to all materials required for prevention of COVID? (mask, sanitizer, gloves, hand wash etc) Are all members of the family with you during this lockdown No‐9 Yes ‐9 Yes ‐9 Yes‐9 If Yes, are you happy? Are there any problems If Yes, list them Do you have any fears/worries in the current family situation? Yes – 9 Yes‐ 7 Poor financial status‐ 8 Yes ‐ 9 No‐2 Cant go out ‐1 If Yes, list them Your child has a birth defect, has the treatment started ? When lock down be over‐8 No ‐9 No transport‐1 Whose life matters? 148 10. Patients with Paralytic Polio Age Gender Do the PwDs have a disability Certificate? Do you live in your own house or rented house? Do you live alone or with family at home? Oldest‐ 58 Female‐14 Yes‐25 Own ‐21 Family‐21 Youngest‐10 Male‐23 No‐9 Rented‐16 Alone‐16 Average‐35 Blanks‐3 Have you ever attended School? Highest Education Are you aware of covid 19 and pandemic now? Do you know where to go/whom to contact if you are unwell with cold, cough or fever? Have you suffered any health problem in the past two weeks? Has your daily routine changed? If yes, explain Yes‐33 Madrasa‐1 Yes‐32 Yes‐30 Yes‐4 Yes‐27 Blank‐4 Prmary‐3 Not fully‐5 No‐7 No‐33 No‐10 High school‐8 Secondary‐2 University‐12 MBBS‐1 Are you facing difficulties when you don’t meet your friends during the lock down period? Are you facing difficulties with leisure, recreational activities outside being curtailed In the last 3weeks, have you noticed a change in your mood? Have you felt sad? Have you felt irritated? Have you felt extremely happy? Yes‐14 Yes‐21 Yes‐12 Yes‐4 Yes‐8 No‐36 No‐23 No‐11 No‐ 14 No‐27 No‐21 Blanks‐11 Blanks‐6 Blanks‐8 Whose life matters? 149 Have you lost interest in things that I used to do? Do you find it difficult to enjoy? Are you always thinking negatively? Have you felt tired or fatigued for no good reason? Have you had multiple pains and aches without a reason Have you had poor digestion for without a reason Yes‐4 Yes‐21 Yes‐7 Yes‐8 Yes‐3 Yes‐4 No‐33 No‐13 No‐30 No‐28 No‐34 No‐33 Have you had irregular bowel habits Have you felt anxious? Have you felt worried? Have you felt restless? Have you had a sense of panic/ ghabrahat? Is there any change in your sleep pattern? Yes‐4 Yes‐19 Yes‐26 Yes‐11 Yes‐9 Yes‐18 No‐33 No‐17 No‐11 No‐26 No‐28 No‐ 19 1.2 If Yes, is it less or more? Is there any change in your food/eating pattern/habit because of lockdown? Do you have a problem in procuring essential supplies for your daily living? Are all members of the family with you during this lockdown Less‐15 Yes‐ 11 Yes‐10 Yes‐25 More‐3 No‐23 No‐26 No‐11 If Yes, are you happy? Are there any problems Do you have any fears/worries in the current family situation? Is there any change? If so, what is the reason for the change? List the difficulties and comments. Yes‐29 Yes‐8 Yes‐13 No‐8 No‐25 No‐22 Yes‐5 Yes‐2 Yes‐3 Yes‐3 No‐11 No‐14 No‐2 No‐13 Whose life matters? 150 Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown No change Not meeting anyone Father is not getting job. Difficult to go to hospital Financial support should be provided to daily wage workers Physiotheraphy stopped Relatives not able to visit Sons tuetion stopped, self study at home Disabled and cancer patients needs help in going to hospital. Helpline should be provided No, Patient is admitted in hospital prior to lockdown Prior to lockdown family members use to come to hospital, for the last 3 weeks no is able to come to hospital Post lockdown patient brother lost his job in Kerala is desperate to come to native place but not able to do so. Govt. should provide free ration and accomodation for sending the migrant workers to their respective states No Mother not able to visit. Father no job Both father and brother not able to earn Govt. should allow people to share their difficulties and freedom to go to hospital No No one of her family could come to meet her Police are not allowing her parents to visit her in hospital. Ration is not available at home Extent the services deeply to low socio income people Lost of job. Now living by spending the savings Parents used to come but now not able to visit No transportation Police should be more polite, Hospitals should be improved Yes sleeping more due to not going to work. More time for spiritual work Friends who used to call stopped calling Not able to go to work, not able to earn. Food hotels are closed now cooking by own Govt. should get list of PwDs and give awasreness for people like him No No No No No No No No No No transportation and health risk No What govt. is doing is good Whose life matters? 151 Has your daily routine changed? If yes, explain Do you have any relatives or friends who meet you often and help. Have they met you in the past two weeks. If not has this caused any difficulties? Have you or your care‐ giver/family members have any issues or compatibility during the lockdown period? If yes, please describe. What do you feel should have been done to help people like you during the lockdown No No No Try to help PwDs stranded at home through police Sad children stopped going to school Yes No Cannot go down from house for dropping somewhere. Driver not able to come dtransportation Parents, friends and well wishers not able to come here Proccuring food and coming to hospital Yes, care giver cannot go to work No The source of income was stopped due to lockdown Prior information before lockdown. Govt should addressed the common norms, problems more efficiently Yes, unable to meet family and unable to stay together Yes husband not able to come down from Bihar to delhi to join us. Unable to travel Should have taken enough percautions while travelling & meeting people Yes, daily morning walk stopped Friends could not come home due to lockdown People should get free pass to visit hospital Whose life matters? 152 What would be your suggestions to improve the situation faced by families of people with disabilities during the lock‐down period? Are there any social, emotional or psychological issues that you are facing that you wish to mention? Are you facing difficulties when you don’t meet your friends during the lock down period? Govt. should borne medical expenses. Ambulanca should be provided During lockdown patient started fighting with her sister often. Her behavior changed and most of the time she is irritated No Provide facilities to contact NGO's, Provide psychological help No Yes , not able to help others who are disabled Govt. should make proper arrangement for migrant workers for shelter, fooding and medical care Yes worried about family membrs and friends Feeling depressed and sense of anxiety with present situation Provide ration, provide transport Yes cannot earn money parents eat only once in a day No Arrange special transportation by hospitals No No Availability of sanitizer and mask difficult Yes, not able to get trearment done, not able to meet parents No Govt. Should reach out to disabled persons and NGOs should be active enough to reach out. Rear and anxiety aboutb society. Interaction with friends have come down Yes church meetings have come down No No No No No No Provide job to those who don’t have No No No No No Patient used relative car but car was let go because of the disability Not much WHO guidelines should be followed, people should be made aware of the difficulties faced by PwDs Yes worried about other PwDs Yes not able to interact with them, Not able to get the needs from friends who used to deliver at home Ambulance and Medical facility for PwDs No income and so huge financial burden. No relaxation on house rent as advised by govt. Yes, emotional support has lost Whose life matters? 153 To help and support who are in need No No Govt. should put special force to to help PwDs No Yes friends used to give me mental support Whose life matters? 154 APPENDIX 4 Story of Gufran Ghufran ( Arabic word meaning Mercy or Forgiveness) was born 21 summers ago in a small hamlet near Meerut a town near Delhi. He belongs to a family of four brothers and two sisters. Unfortunately both his legs were paralysed from Poliomyelitis when he was only two years old in 2001. He never walked and he never stood on his legs. He could only crawl. In the same year that he had his paralysis his father died suddenly. His mother had a tough time bringing up all the six children and though Ghufran could only crawl he attended school. His mother did try to get him treated but everyone told him that he will never walk. He heard of St Stephen’s Hospital from a neighbor and came here in the hope of standing on his two legs. He was admitted with severe deformities of both hips and both knees. On assessment it was felt that he could be made to stand with braces provided his deformities were corrected. He was therefore admitted and multiple surgeries were done and to keep the joints supple he was maintained on traction and daily exercises. Gufran on Traction after Surgery Gufran On arrival ‐ Crawling Whose life matters? 155 Amitted in November 2019, he was in the hospital for almost five months before his deformities were corrected now after all these months in March 2020 he was hoping to have his braces fitted and sand on his two feet for the first time. On being sent to the workshop for fitting him with the braces he was sadly disappointed. The brace could not be made as components for making the brace was out of stock. Fresh stock could not come because of the lockdown from Corona Virus pandemic. His traction was taken off for measurement, and as there was no immediate possibility of the supplies arriving traction was reapplied. Gufran is sad and disappointed. He was excited about the possibility of standing for the first time in his life. Assistive Technology Workshop Shortage of Knee caps Shelf for knee joint ; empty Whose life matters? 156 The Corona pandemic related lockdown has put everything on cold storage. Assistive Technologies for disabled should be part of essential supplies, but the ground realty for them is keeping them trapped in their own bodies. Finally we were able to cannibalise joints from old braces and make new braces for him to get him to stand for the first time in his life. Knee Joint Out of Stock Gufran standing for the first time in his life Whose life matters? 157 Refurbishing of old braces to make new braces because of supply chain issues. Whose life matters? 158 APPENDIX 5 Indonesian Tranparent mask for the Deaf and Hard of hearing