Impact of COVID-19 on persons with disabilities in India
The COVID-19 pandemic is proving to be a challenge for achieving the SDGs. How far this will impact the deliverables especially those that are time-bound is difficult to state now. The challenge is of Herculean proportions for many low- and middle-income countries like India. The health system is fragmented - quality can be inconsistent and coverage inadequate. The meagre wages and fragmented health systems compromise the situation even more. And within countries like India, the steep differentials between regions, sex and disadvantaged populations including Persons with disability can be further detrimental to their wellbeing if not recognized and managed in a timely manner.
It was therefore felt that there is a need to understand the effect of the COVID-19 pandemic on lives of Persons with disability, their care and support systems, nutrition, livelihoods, social participation, mental health and access to health and education services. The specific objectives of the study were to assess the level of disruption on the living conditions of Persons with disability due to COVID-19 and related restrictions and to generate evidence to inform actions for future pandemics or emergency preparedness.
A cross sectional, mixed-methods approach, using a purposive snowballing technique was adopted for the study. Data was collected from across the country using tools like telephonic semi structured interviews and focus group discussions facilitated through the network of NGO partners providing care and support for Persons with disability. Persons with disabilities, NGO leadership, government programme officers and caregivers of Persons with disability were included. The cross-sectional survey was repeated for a 2nd time, 6 weeks after the first interview on a randomly identified 25% sub sample to discern any change in trends over this period.
A sample of 403 respondents were included in the study, from 14 states. The median age of Persons with disability who responded was 28 years with an interquartile range (19, 36.5 years) and 60% were males. 51.6% had physical impairments, 16.1% had visual impairments, 10.9% had intellectual impairments and only 9.2% had speech and hearing impairment.
Four out of five (74.6%) persons with disabilities using assistive devices sanitised their devices regularly. Soap and water were used most commonly. Use of alcohol-based sanitisers was significantly higher among those with visual impairment.
Overall, 2 out of every five people (42.5%) with disability reported that lockdown had made it difficult for them to access routine medical care. Among those with a pre-existing medical condition (which was 12.7%), 58% stated facing difficulty in accessing routine medical care. Therefore, persons with disabilities with antecedent medical problems suffered significantly more than those who did not have an antecedent health condition. Nearly a quarter reported difficulty in getting their medications while 28% reported postponing their scheduled medical appointments because of the lockdown. More than half the persons with disability perceived that continuous lockdown would have a deleterious effect on their health.
Just above a third (35%) reported the need of out-patient services at hospitals/clinics during lockdown of whom more than half (55.6%) had difficulty in accessing out-patient services. 16.6% stated that they needed emergency medical care during the lockdown among whom 45% had difficulty in accessing the services. Of the 35.7% needing medicines during the lockdown, nearly half (46%) stated that they faced problems in accessing the same. 58% of those who needed regular blood pressure monitoring could not get it done during the lockdown. A third of those who stated needing regular blood sugar estimations expressed their lack of access to such a service. 5.2% of respondents with disability stated that they needed a surgical procedure of whom 47.6% could not attend for the same due to the lock- down. Of those needing surgical intervention, three fourths had speech and hearing impairment while 9.5% had visual impairment.
Among the 17% needing rehabilitation services, 59.4% failed to access the same. Reported difficulties in access were same across the different groups of disability, thereby highlighting that concerns of persons with disabilities are similar across disabilities. Most people needing rehabilitation services said it was for physiotherapy which was compromised during the lockdown.
The important psychological reactions to COVID-19 pandemic vary from fear and anxiety, panic, feelings of hopelessness to depression. Fear of getting infected with novel coronavirus and loss of income were affecting persons with disabilities the most. 81.6% reported experiencing moderate to high levels of stress. This shows that there is an urgent need to ramp up mental health support services for persons with disabilities.
Stigma followed by discrimination and effect on family relationships were leading psycho- social problems reported by persons with disability. Isolation, abandonment, and violence were other worrying psycho-social problems reported showing the lack of empathy during the difficult times.
Among the 34.5% who stated that they needed information on mental health issues , only 25.9% had access to such services. Only 20% were able to get regular mental health counselling or therapy related services during the COVID-19 outbreak and lockdown, and 11.4% faced problems getting their regular psychiatric medicines.
Mental health concerns of caregivers of persons with disability were also ascertained and important leads were observed. Half of them felt moderately stressed caring for children or other family member with disability. 58.2% were unhappy that the therapy sessions for their child with disability has ceased during the lockdown.
Activities for Daily Living
Just over four out of every five people (81.6%) with disability stated that they needed assistance for daily living and family carers supported most. Because of the family support, 55.8% felt that they can manage if such a situation of lockdowns arose again.
As expected, livelihoods were adversely affected due to the lockdown. 84.2% stated that their daily lives had been impacted. The lack of mobility both in rural and urban areas led to distress. For a third (34.3%), even drinking water supplies were affected. A third (33.1%) also
mentioned that their pensions were affected. Around 45.7% of persons with disabilities were forced to borrow money during the lockdown mainly for livelihood. 84.7% had to borrow or request for support for food to cope with financial crisis. 18.2% reported that loans were advanced by inclusive cooperative societies.
An overwhelming proportion (73.3%) stated that children were distressed with school closures and it had affected learning (school level education). It should be remembered that school closures do not impact only the academics but also have profound impact on school meal programs, special education, therapy, counseling and peer-support and kinship.
Social participation and empowerment activities were affected in more than half the respondents with disabilities. The maximal impact was on regular functioning as members of Disabled People’s Organizations (DPO). 54.2% of the respondents with disability felt that working/participation at the community level and Panchayati Raj Institutions (PRI) will be affected after the covid-19 pandemic.
Overall, it was observed that the impact of COVID-19 was the same irrespective of any age group, gender, or marital status. The impact of coronavirus pandemic on access to rehabilitation services and participation in social empowerment activities differed significantly among people having different type of impairments. Due to COVID-19, occupational status had a significant adverse impact on access to all routine services. Pensioners reported an adverse effect of COVID-19 on all domains while persons with disability with children reported adverse impact in relation to accessing medical services, rehabilitation, and mental health.
We conducted 11 in-depth interviews (IDIs) and 2 focus group discussions (FGDs) in the lockdown period and 2 FGDs after easing of lockdown. People with disabilities, ‘carers’ and relevant stakeholders shared a wealth of information in their own words on the impact of lockdowns on their lives. Lockdown has had a profound impact on Persons with disability. The major domains affected were livelihood and mental health. Lockdown had a negative psychological impact on Persons with disability and one of the most common reason was economic difficulties. Some persons with disability stated that COVID-19 had broken their confidence and resolve. Many faced difficulties in accessing necessities such as food, mainly vegetables and pulses, whereas the government provided rice.
Access to medicines was difficult mainly due to travel restrictions in their region. In addition to difficulties in livelihood and the profound psychological impact, the lack of information in accessible formats was highlighted by most interviewees as was the lack of public transport when they needed to access general health services and treatment. What was disconcerting being that there were reports of large number of children with disabilities being abandoned by their parents and had to reside in institutions.
Communication was badly affected during the COVID-19 pandemic as NGOs were unable to reach persons with disability needing health services or consultations. A major concern that was raised was the lack of an inclusive response during COVID-19 as the needs of persons with disability was not given adequate attention when guidelines on COVID-19 response were released. Another issue that was all pervasive was the financial impact of COVID-19 on persons with disability and their families.
Not only were incomes compromised but even withdrawing their money from their bank accounts was a challenge. The adverse financial situations led to using family savings earmarked for other purposes for feeding themselves and keeping themselves alive and secure; this could also lead to borrowing money for health services and treatment if any family members fall sick. This expenditure which can be potentially catastrophic renews the need for universal, inclusive health care which protects all, including persons with disability from catastrophic health expenditures.
The responses by stakeholders on government future preparedness believed that the governments may not be prepared for another wave of COVID-19 or a similar health emergency. Respondents opined that it would have been better if adequate time for preparing for the lockdown and its consequences was given at the beginning so that adequate arrangements for food and support could have been made. Stakeholders indicated that government should address the livelihoods of persons with disability and their family so that lockdowns such as the current one has minimal impact on persons with disability lives.
Adaptation to COVID-19 and the lockdown and unlocking process
Trends over the COVID-19 timelines were compared by ascertaining responses from persons with disability at two time points during the life course of COVID-19 in India. Positive trends were observed once strict lockdown restrictions were withdrawn. Difficulty in accessing emergency medical care reduced significantly once restrictions were lifted. There was also a significant difference in Persons with disability being able to access rehabilitation services. One striking feature observed was that contrary to popular perception, online consultation was not very attractive both during the lockdown, or later on, and this should be a good indicator for planning response services.
There were significant differences reported in stigma and discrimination which reduced significantly after the unlock process started. The mental health status and apprehension about getting infected also reduced significantly after the lockdown curbs were lifted. However, a substantial proportion of persons with disabilities exhibited stress both during and after lifting of the lockdown. On similar lines, there was no significant difference in relation to caregiver’s mental health during lockdown and after easing of lockdown. This aspect needs targeted attention for the future.
Regarding items pertaining to education, livelihood, and social empowerment, there was no statistically significant difference in proportions before and after easing of lockdown. This could be because the process of getting back to pre-lockdown state has not yet been seen or achieved with many restrictions including on public transport still in place in many regions of across India. If the assessment is repeated a few months after all restrictions are withdrawn, it will give a better idea of people’s perceptions after the pandemic completely ceases.
The apprehension of visiting a hospital for care persists as was seen in the study where 72.9% hesitated to go to hospital because of fear of contacting COVID. 86% were scared to go out and meet others. 78.1% did not fear the lack of companionship, both during and after the lockdown. Some program managers opined that the public health system was concentrating only on COVID-19, to the determinant of other health conditions at all levels of care from a Primary Health Centre to a district hospital. Concerns were also expressed about the cost of services being charged by hospitals.
The findings of this study have highlighted the concerns of Persons with disability, their care givers and the health and developmental systems due to COVID-19. These observations should be used to prepare protocols and guidelines to tackle such emergencies in the future. Advocacy with the governments is critical so that the response to such a health or non-health emergency in the future can be quickly mounted and operationalized. An inclusive plan to mitigate the adverse impact should be in place quickly and implemented immediately rather than losing a lot of time in the response cycle. Some key recommendations include:
a) Special assistance and disabled-friendly COVID-19 protocols must be available and accessible to them.
b) Provide supplies such as medicines, disinfectants, masks etc. for Persons with disability to protect themselves as well as others in their families from COVID-19 infections.
c) Information on rehabilitation, therapy support and other specific services must be made available to them in accessible formats.
d) Enable tele-rehabilitation and support needs of persons with disability, especially children who were receiving services through the RBSK programmes.
e) Online counselling must be started in management of stress and fear and anxiety.
f) Respective State Governments must ensure Relief measures, special financial assistance, subsidies, furlough schemes, access to interest free loans for improving or at least to maintain current livelihoods.
g) Loans available from cooperatives, and the obstacles to availing such loans must be quickly cleared.
h) Best practices such as organic farming and dairy and the income from these initiatives must be promoted rapidly.
i) The government should ensure that pensions are not negatively impacted in future.
j) Online education for children in schools must be provided in accessible formats. To avoid the pressure of buying smart phones by parents, education must be provided in formats that are easy for parents to receive, both economic and technology wise. For example, special educators could prepare individualised education plans for children and train the parents through phone or a school website podcast to deliver this to their children at home.
k) Provision of free internet services for persons with disabilities who require access to internet for education must be explored.
l) Prioritise persons with disability when developing a program or strategy to combat emergency situations like the pandemic.
m) Include persons with disability in the development and implementation of any plan, policies, strategies and programmes.
(The article has been authored by Murthy GVS, Kamalakannan S, Lewis MG, Sadanand S, Tetali S)