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COVID-19: THE PANDEMIC AND PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
S. VENKATESAN
Professor in Clinical Psychology
All India Institute of Speech and Hearing, Mysuru
My story: A personal narrative
My name is Raj. I am a 35-year old. People call me Downs rather than by my name. Never mind. I have now got used to it. I love having people around. I enjoy greeting, chatting, or being with them. Some people tease me by asking when my marriage is. I smile and avoid such people. I have a job in an institute. My mother has been taking me there since my childhood. For a few years, I used to sit at the entrance of the library. I would observe everyone who enters or goes out. I was told to see that no one comes inside with their bags or books. Before they enter, they leave their things inside a locker. When they go out, they must carry only the books sealed at the counter. I enjoy my work.
Some months later, another sir joined the library. He said that I could also dust the bookshelves once in the morning and again in the evening. I was taught how to dust the books arranged in rows. If any book was outside the row or upside down, I would rearrange them. If I found any book torn or damaged, I would hand it over at the counter. They repaired and sent it back to me. I would keep them back in their place. I know which book is kept where. If someone tells me the book's size or color, I can fetch it. Many times, I do this correctly. Everyone praises me for this. They say that I am an expert in finding books. I know to read a few words in English. I can write my name and address in my mother tongue. I have a cell phone with some contact numbers. I have learned to dial home on it. The phone has a section with photos of my parents and me.
Everything was okay with my job. An auto-rickshaw driver takes me to work every day. He arrives when the clock in my house shows the small needle at eight. My mother packs my lunch and water bottle by then. I don’t fully understand the clock. But I know when it is time to leave home, have lunch, or go to the library by the needle's position.
I am told not to leave the main gate of the institute. My parents give me three ten-rupee notes every morning before I leave for work. I use the money for coffee with a snack in the morning, mid-day, and afternoon. I enjoy munching those bites with hot coffee. My dad says it is from the money I earn. I don't know how much I am paid. But, I have a beautiful orange bank passbook in my name. If we open that, we can know how much money is there in my name in the bank. Some people ask me how much money I have in the bank. Really, I don't know. But, if I sign a slip along with my father, the bank will give money.
For some days, things have changed. I am told that I cannot go to work. When I asked why, they said, there is a dangerous disease out there. If we go out, we will fall sick. Every day, I hear others talking about it. Many people who are going out are falling ill. Some are even dying. First, they told me that I must not come to work for a few days. I marked that date on my calendar. Every day I tear out one sheet off the calendar. Once we reached the marked date, I said that I will leave for work. Then another fresh time was marked again on the calendar. I am told to wait until that date. I don't know how long to wait.
The books in the library would have all gathered dust by now. I am told that no one is being allowed inside. Even if I am permitted for work, my mother tells me to practice covering my face. I tried once. I did not like it. It hurts behind my ear. I can't breathe easily. I am now being taught to wash my hands. I used to clean my face and hands before also. But, now I must do it again and again. I am also told not to shake hands with others. Hereafter, they ask me to stand far away from people. When I was young, I used to fall sick frequently. I used to get coughs and colds regularly. Now, it is better. Others say that I will get them back if I go out. What shall I do now sitting at home? How long can I just watch TV? I promise not to touch others. I won't go to the canteen. I will not sit next to anyone. I won't mind any of these things. Can someone tell me when I can go to work?
The preceding first-person narrative says it all. People with disabilities (PWDs) in general and Persons with Intellectual and Developmental Disabilities (IDDs) are the worst affected by the COVID-19 pandemic. To start with, such persons may not fathom these sudden changes in circumstances. Why is no one going out? Why don’t people come close to each other? Why are autos, buses, trains, or planes not running? Of course, they may understand a close down for a day or two. But why it is all prolonged is confusing to most of these persons.
IDDs are conditions that are usually present at birth, and that negatively affect the trajectory of the individual's physical, intellectual, and emotional development. The lifelong disability starts any time before the developmental period of eighteen and is characterized by intellectual functioning and adaptive behavior problems. Affected persons have below-average levels of intelligence and adaptive behavior. This is expressed as Intelligence Quotient and Social Quotient, which is indicated by limitations in communication, self-direction, social skills, self-care, community resources, ensuring personal safety, and requiring continued support for daily living (AAIDD, 2010).
COVID-19 Etiquette
The newly enforced corona etiquette is learning yet to be mastered. Handshakes, hugs, a kiss on the cheek, or embraces are all now going to be things of the past. A bow and greeting with folded or waving hands are now being propagated (Samanta, 2020). Social distancing is the latest buzz word that has to be understood and practiced. Wearing masks is becoming an inherent part and parcel of everyone’s daily attire. Hand washing regularly is no more to be diagnosed as a compulsive disorder. Teaching or maintaining personal hygiene by itself is a daily challenge for caregivers of these persons. Coughing, singing, sneezing, and spitting in public, particularly without covering the mouth, are now seen even as criminal behavior liable for punishment. The same is to do with littering and clearing one's nostrils. When a mask covers nearly half of the face, reading emotions becomes a challenge in day-to-day interactions. Smiling or scowling beneath the mast cannot be differentiated. The muffled voice from under the mask is tough to be understood and more so by persons with intellectual disabilities. There are also rules on how to dispose of used masks. Sharing food is now almost no-never (Kelly, 2020).
It is challenging to keep track of who is meeting us, when, where, how, or how long as part of contact tracing is difficult. Many children and adults with intellectual disabilities having additional mobility issues may have to fall back for physical support from others. How this can be helped without touching is a huge challenge. With or without corona, society is replete with several faulty stereotypes, prejudices, or misconceptions about individuals with disabilities. During these challenging periods, such notions are likely to get aggravated. A steady flow of facts, figures, news, and views in the simple form is needed to meet PWID's information needs. Society tends to scapegoat the vulnerable and weaker sections of society whenever there is a natural or man-made disaster. It is understood as a catharsis mechanism to give vent to pent-up energies, as explained by social psychologists. Social media posts are already doing rounds that doomsday is not far away (Depoux et al. 2020; Lin, 2020).
Increasing screen time is the most convenient and common-sense solution used by most caregivers of such affected persons. This is likely to only aggravate than mitigate the problems. At one point in time, it might become difficult to wean them away from gadgetry. Professional service providers face unique difficulties when handling such children. Clinic or institution-based services are out of consideration, at least for now, when the corona situation is acute. Innovations are being worked out to check whether tele-based services are preferable to real-time face-to-face therapies. If this is to be so, the guidelines that could work with most mental-health conditions are different for PWID. Efforts are on to establish toll-free, pre/post-paid time-bound or consultant specific community-radio talks or helpline services. Parents or service receivers expect individualized and instantaneous solutions during such consultations. This is not feasible or practical since each case requires a detailed work-up, diagnosis, intervention planning, and intervention.
Lockdown and Quarantine
These terms have become the catchphrase of the times. Lockdown or shutdown describes the more general and widespread restrictions on movement, work, and travel in a city, region, or country. Quarantine is a way of separating and restricting people exposed to a disease, such as COVID-19. Lockdown and quarantine with isolation, social distancing, and community containment are taking a psychological toll and impacting the lives of millions across the world at personal, professional, and societal levels. It is creating a variety of emotional-behavioral reactions like irritability, intolerance to rules, whim and excessive demands, fear, anxiety, panic, depression, suspicion, guilt, anger, helplessness, boredom, and restlessness (Girdhar, Srivastava & Sethi, 2020; Jayadev & Shetty, 2020).
A lockdown induced emotional and behavioral sequel is not an explored area of study. Absence of social contacts, diminished activity levels, sedentary preoccupation for the most part of the day, and lack of variety in daily routes in these times can lead to irritability, anxiety, panic, fears, and depression. For some of these persons, it may manifest as problem behaviors. These may be reciprocated by high intensities of expressed emotions, even by the other family members. The overly charged family system could also react with increased child abuse and domestic violence. One is already hearing anecdotal accounts of intellectually challenged children being abandoned by economically starved and stressed weary parents during these difficult times (Chakraborty & Chatterjee, 2020; Dalton, Rapa & Stein, 2020; Horesh & Brown, 2020).
Play behaviors and leisure-time activities are minimally given to children with ID (Venkatesan & Yashodharakumar, 2016; Venkatesan, 2000; Khoshali & Venkatesan, 2007). Their well siblings find their presence at home, disturbing and companionship immature, dull, boring, or uninteresting (Venkatesan & Ravindran, 2011). Toys are seldom given for play to children with IDD (Venkatesan & Yashodharakumar, 2017). Parents have been observed to have minimal understanding of their child’s condition (Venkatesan, 2003). There are structural and attitudinal barriers that prevent the optimization of home-based problem behavior interventions for such children (Venkatesan, 2017). It is indeed a challenge how such children can be kept constructively engaged at home by the family members themselves amidst the shutdown.
While this is all true of the so-called healthy controls, it can hit hard on PWIDDs. There can be symptom exacerbations in instances wherein they were dormant during the pre-lockdown period. They are likely to have disruptions in general health, mood, appetite, and sleep. The lockdown also means a sudden deprivation of specialized rehabilitation services and work opportunities. Among them, the bed-ridden or wheelchair-bound are forced to make the bedroom their world and cannot come out of its confinement. They cannot be wheeled to nearby parks, for a stroll, or into community areas. All this boils down to a near dehumanization of these people. In China, a family made headlines when a teenager with cerebral palsy died in Wuhan after his father and brother diagnosed with coronavirus were quarantined in a treatment facility that was unable to care for him (Courtenay & Perera, 2020; Rose et al. 2020).
Risks and Vulnerabilities
The vast majority of PWDs have a hard time surviving, let alone living lives with reason to value. Most PWIDDs have fragile health. They can likely have one or more associated conditions like epilepsy, respiratory or cardiovascular disease, diabetes, cardiovascular problems, and obesity. Available evidence suggests that they are five times more likely than the general population to develop COVID-19, and those who get it are about five times more likely to die from it. The WHO has declared that PWDs be included in the high-risk, susceptible, marginalized, and vulnerable group for the pandemic (WHO, 2020; Yao, Chen & Xu, 2020).
Apart from health-related threats, added social prejudice and negative attitudes deprive them of needed medical attention during a crisis. They are susceptible to coercion, verbal, sexual, or physical maltreatment and abuse. Unfortunately, harm often comes from the hands of those who are assigned to provide care, support, and protection. Lay people view them as "less human" and, therefore, "less valuable." The limited or lack of opportunities for them to learn, dependence on others, physical defenselessness, social isolation, and limited cognitive and communication abilities form a deadly concoction to aggravate their vulnerabilities for abuse or maltreatment. Women with intellectual disabilities are the most vulnerable due to their double disadvantage based on their condition and disability (Fogden et al., 2016; Green & Stykes, 2007).
Economic and Occupational
A small percentage of adults with a borderline and mild degree of IDs are remuneratively employed in protected environments (Venkatesan, 2017). The ongoing pandemic has adversely impacted the Indian economy. With the prolonged country-wide lockdown, global economic downturn, and associated disruption of demand-supply chains, job losses have become inevitable. There is an ongoing impression that more people are dying not owing to Covid-19, but due to losing jobs and ending in poverty. In these circumstances, employment and job retention for PIDs can be a real challenge. Empirical studies are needed to examine how many of the PWIDDs entitled to receive the monthly pension for their sustenance are continuing to receive them even during the ongoing epidemic (Kachroo, 2020; Singh & Raju, 2020).
Research
Research on COVID-19 vis-a-vis PWIDDs is yet to take off all over the world. Available literature for key-word searches for terms like “corona-epidemic-intellectual disability-mental retardation” on the world-wide-web currently shows anecdotal views or news, interviews, and opinions of experts. There are few stand-alone websites and blogs on the subject advocating on this neglected issue and offering guidelines for practice. There are no authored books on this topic so far except those from national or international organizations for health promotion. Data based empirical research on the theme is awaiting inquiry. There is an acute shortage of public education material on corona and PWIDDs (Box #1; Das, 2020; Courteney, 2020; Roy, 2020; Tummers et al., 2020).
Summary
In sum, an attempt is made in this article to highlight the unique challenges in addressing the acute and long-term needs of PWIDDs in the context of the ongoing pandemic. Beginning as a personal narrative, critical psychosocial issues related to COVID-19 etiquette, lockdown-quarantine, risks-vulnerabilities, economic and occupational fallouts, and research are highlighted. Admittedly, the matters addressed are not exhaustive. The road ahead is unknown, at least for the time being. Like the protagonist in the personal narrative at the beginning of this article, one can only ask: how, when, or where can we get down to work? The challenges are for all takers.
References
American Association of Intellectual and Developmental Disabilities. (2010). Intellectual Disability: Definition, Classification, and Systems of Supports, 11th Edition. Silver Spring, MD: Author.
Chakraborty, K., & Chatterjee, M. (2020). The psychological impact of COVID-19 pandemic on the general population in West Bengal: A cross-sectional study. Indian Journal of Psychiatry, 62(3), 266.
Courtenay, K., & Perera, B. (2020). COVID-19 and People with Intellectual Disability: impacts of a pandemic. Irish Journal of Psychological Medicine, 1-21.
Courteney, K. (2020). Letters: Covid-19: challenges for people with intellectual disability. British Medical Journal, 369. https://doi.org/10.1136/bmj.m1609
Dalton, L., Rapa, E., & Stein, A. (2020). Protecting the psychological health of children through effective communication about COVID-19. The Lancet Child & Adolescent Health, 4(5), 346-347.
Das, N. (2020). Psychiatrist in the post-COVID-19 era–Are we prepared? Asian Journal of Psychiatry, 51, 102082-102082.
Depoux, A., Martin, S., Karafillakis, E., Preet, R., Wilder-Smith, A., & Larsom, H. (2020). The pandemic of social media panic travels faster than the COVID-19 outbreak. Journal of Travel Medicine, 27(3), 31.
Fogden, B.C., Thomas, S.D.M., Daffern, M., et al. (2016). Crime and victimization in people with intellectual disability: a case linkage study. BMC Psychiatry, 16, 170.
Girdhar, R., Srivastava, V., & Sethi, S. (2020). Managing mental health issues among the elderly during the COVID-19 pandemic. Journal of Geriatric Care and Research, 7(1), 29-32.
Green, D., & Stykes, D. (2007). Balancing rights, risk, and protection of adults. Chapter 3. In: C. Bigby, C. Fyffe & E. Ozanne. (Eds.). Planning and support for people with intellectual disabilities: Issues for case managers and other professionals. London and Philadelphia: Jessica Kingsley Publishers. Pp. 65-83.
Horesh, D., & Brown, A. D. (2020). Traumatic stress in the age of COVID-19: A call to close critical gaps and adapt to new realities. Psychological Trauma: Theory, Research, Practice, and Policy, 12(4), 331.
Jayadev, C., & Shetty, R. (2020). Commentary: What happens after the lockdown? Indian Journal of Ophthalmology, 68(5), 730-731.
Kachroo, V. (2020). Novel Coronavirus (COVID-19) in India: Current Scenario. International Journal of Research and Review, 7(3), 435-447.
Kelly, B. D. (2020). Coronavirus disease: challenges for psychiatry. The British Journal of Psychiatry, 1-2.
Khoshali, A.K., & Venkatesan, S. (2007). Play behaviors in children with mental retardation. Psychological Studies. 52(1): 90-94.
Lin, C. Y. (2020). Social reaction toward the 2019 novel coronavirus (COVID-19). Social Health and Behavior, 3(1), 1.
Rose, J., Willner, P., Cooper, V., Langdon, P. E., Murphy, G. H., & Kroese, S. B. (2020). The effect on and experience of families with a member who has Intellectual and Developmental Disabilities of the COVID-19 pandemic in the UK: developing an investigation. International Journal of Developmental Disabilities, 1-3.
Roy, P. (2020). The psychology behind response of people in the wake of the COVID-19 pandemic in India. Indian Journal of Psychiatry, [cited 2020 May 30]; 62: 330-31. Available at: http://www.indianpsychiatry.org/text.asp?2020/62/3/330/284449
Samanta, S. (2020). “Namaste” the Indian Culture Plays Important Role For Prevent Corona (Covid-19) Virus: An Appraisal. Studies in Indian Place Names, 40(74), 450-459.
Singh, T. K., & Raju, M. V. R. (2020). Psychosocial impact of COVID-19 to the general population in India. An Annual Interdisciplinary Journal of History, 6(6), 643-652.
Tummers, J., Catal, C., Tobi, H., Tekinerdogan, B., & Leusink, G. (2020). Coronaviruses and people with intellectual disability: an exploratory data analysis. Journal of Intellectual Disability Research, 1-7. https://doi.org/10.1111/jir.12730
Venkatesan, S. (2000). Play activities in children with mental retardation. Indian Journal of Clinical Psychology. 27(1): 124-128.
Venkatesan, S. (2003). A survey on knowledge & opinion rights, immunities & privileges for persons with mental retardation. Disability, CBR, and Inclusive Development (formerly Asia Pacific Disability Rehabilitation Journal). 15(1): 59-68.
Venkatesan, S. (2017). Barriers and facilitators in home-based problem behavior interventions for children. Indian Journal of Health and Wellbeing, 8, 5, 345-351.
Venkatesan, S. (2017). Demographic, cognitive, and psychosocial profile of adults with borderline intellectual functioning. Journal of Contemporary Psychological Research, 4(1): 1-12.
Venkatesan, S., & Ravindran, N. (2011). Attitudes in well-siblings of children with developmental disabilities. Journal of Disability Management and Special Education. 1(2): 1-23.
Venkatesan, S., & Yashodhara Kumar, G.Y. (2016). Leisure and community exposure in persons with disabilities. Journal of Disability Management and Special Education, 6 (1): 1-14.
Venkatesan, S., & Yashodhara Kumar, G.Y. (2017). Toy index of children with or without developmental disabilities. Indian Journal of Clinical Psychology. 44, 1, 60-67.
World Health Organization. (2020). Disability considerations during the COVID-19 outbreak (No. WHO/2019-nCoV/Disability/2020.1). Geneva: Author.
Yao, H., Chen, J. H., & Xu, Y. F. (2020). Patients with mental health disorders in the COVID-19 epidemic. The Lancet Psychiatry, 7(4), e2