Arushi Batra
15th July 2020
“Bahar kitanu hai, bahar nahi jaana hai’’ is what the mother of an 8 year old, has been consoling him. The boy cannot understand why he cannot step out of his home because he has been diagnosed with Down’s syndrome and hypothyroidism. Similarly, for parents belonging to lower income groups, taking care of their child’s dietary requirements and accordingly providing nutritious food is another additional challenge. Another 8 year old boy, diagnosed with 90% intellectual disability, overturns his plate of food on finding his chapati does not have enough ghee. His mother has not been able to get his favorite vegetables either. In his anger, he has taken to biting his siblings and parents, and often starts crying for not being able to venture out.
“I feel helpless. Given our financial problems right now, we need to use everything judiciously. Methi is his favourite but it has become so expensive. We spend Rs 30 everyday on water, and Rs 2 per person to use the washroom. His father is unemployed,” says his mother
These are intercepts from a piece of writing published in the Indian Express (Maharashtra edition)
The point that I’m trying to form is that we are all living in “never imagined” times. And as much as we are all scared that life is so unpredictable, I feel this is just one more reminder of our impermanence, our vulnerability and the nature of our smallness!
In the current situation of the pandemic, with the ongoing COVID-19 shutdowns, mandates, travel bans and restrictions, all of us are collectively trying to adapt to the “new normal”. Be it WFH, or schools and other institutions shifting to e-platforms, it is sort of now common that people of all groups are impacted globally. While we all can view all of this through a “wider” lens, however, somehow collectively, the already left out group is now feeling all the more secluded.
What are these IDDs? What implications do they have on kids? And why is it important to look at them in the time of this pandemic?
Intellectual disability and developmental delays (IDDs) are disorders that belong to the category of neurodevelopmental disorders, are usually present at birth and negatively affect the trajectory of an individual’s development. Mental retardation, autism spectrum disorder, down’s syndrome, epileptic encephalopathy, ADHD and behavioural disorders are common examples of IDDs. Those kids at the severe end of the spectrum, such as Severe Intellectual Disability or autism (especially dealing with a lot of social issues), will be bound to face difficulties to deal with such changes in their routine.
Hence it becomes equally important to consider the impact of the various phases of the pandemic on these special kids as I prefer to call them and also their parents and caregivers. Spending time outdoors is important for such kids to control hyperactivity. With no option for physical play and socialization, they will become more interested in social media and online entertainment, which may potentially render them more socially withdrawn when the situation improves. There could be other instances also where the kids are confined to the home and in some situations may be separated from the parent because they are quarantined, or their parents are quarantined. They may experience a range of psychological issues such as anxiety, fear, worry, depression, difficulty sleeping, and loss of appetite. Some kids might not receive the kind of therapeutic or medical inputs that they require for example access to various therapies, special schooling, psychotropic medication, etc. Also the online educational platform being embraced for school-going children struggles to communicate with special needs children. To give an example, an article from the Hindustan times stated a statement of a mother of a 15-year-old speech impaired child, enrolled in a South Delhi private school, who said that they were not receiving “age appropriate” study material. “Either the school doesn’t send us anything or it sends us random videos and worksheets without a systematic approach. Every child with some disability has an individualised education plan (IEP), based on their ability and learning levels, and the study material should also be provided accordingly,” she said. Hence, many of the parents and caregivers do not know and understand sign language communication that only special educators can, thus feeling the hard times.
Children suffering from Intellectual Disabilities seem to be at a greater risk of being infected with the virus as it is mostly attributed to two reasons: they mostly live in near proximity to each other in special care homes, and many depend on physical contact with carers for their everyday lives because they can not do it themselves. They typically have a very high chance of early mortality from respiratory infections , which renders research into upper respiratory disease-causing coronaviruses (e.g., Middle East respiratory syndrome and extreme acute respiratory syndrome) critical.
Even though there are efforts from the government for a lot of things, we have somehow failed to recognise the category of Children with disabilities (CWDs) from the entire discussion. A research study by Vidhi Centre for Legal Policy titled as Towards an Inclusive Framework in India: An analysis of the Rights of children with disabilities and the Right to Education Act claims that an astonishing 75% of children with disabilities don't attend schools in India. This when combined with other structural inequalities like poverty, caste, gender, religion etc., such kids are more likely than other vulnerable categories to be excluded from education. If we look at the existing landscape of education for Children with Disabilities in India , it is already at a crossroad. There is an alarming shortage of data. Are we ensuring education during COVID-19 and are these initiatives inclusive enough? Access to technology, and the internet in particular, can help People with Disabilities (PWDs) access information, and engage themselves in socio-cultural networks and economic activities. This becomes very important especially in the case of India where 2.68 crores Indians suffer from some form of disability (census 2011). Sixty-nine percent of this population live in rural areas. However, we do need to look at access, both in terms of design as well as infrastructure.
So, what is the way forward?
This is a pandemic whose only solution probably for the time being is social distancing and hence quarantine has increased complexities for parents of children with disabilities. CWDs are often used to their structured schedule based on their Individualised Education Plan and learning environments and thus, these unexpected changes are bound to add pressures for the child as well as their parents.
While it has brought unprecedented difficulties for humanity globally, it has also opened doors to introspect and innovate. Education for children with disability has mostly been seen from the point of access and hardly inclusion. COVID-19 could be an opportunity to enable this inclusion for all kids by building common bases in education through technology-based learning. It is important that we utilise the resources at our disposal and devote the research effort to understand the impact of this pandemic in families where there is a member with IDD and how adaptations can be made to provide the most effective help. We at CSIR-IGIB have developed a questionnaire for parents and caregivers of patients suffering from Rare Diseases. This questionnaire aims to characterize and quantify the impact of COVID-19 on Rare Disease Patients in India and is part of the ongoing efforts of GUaRDIAN initiative for Rare Disease Genomics at the CSIR Institute of Genomics and Integrative Biology (CSIR-IGIB). Patients/parents/care-givers can participate in the questionnaire. This covers a lot of aspects with relations to IDDs too. We are also trying to examine the key sources of social support available to families and the ways in which this is provided, either directly or remotely and the implications of these.
Participate in the research on impact of COVID-19 on Rare Disease patients.
I could find some useful sites wherein parents or caregivers could go through and figure out a few directories and helplines for their special kids and also some information regarding some Do’s and Dont’s and also various activities that can be done to enhance motor skills.
References:
Virtual learning medium fails to connect with children with special needs - Hindustan Times.
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, 64(7), 475-481.
Excluding the excluded India's response to the education of children with disabilities during covid-19- Times of India.
Maharashtra need special provisions for persons with disabilities- Indian Express
Useful Helpline numbers and documents:
Helpline Numbers for Counselling / Guidance Parents having Children with Intellectual Disabilities during COVID19 @ NIEPID : http://niepid.nic.in/helpline_numbers.pdf
Life in the Times of Covid 19- A GUIDE FOR PARENTS OF CHILDREN WITH DISABILITIES : http://niepmd.tn.nic.in/documents/parents_guide_covid_19_080520.pdf
Various motor skill activities that can be done : http://www.svnirtar.nic.in/sites/default/files/news/DOT-Durga-Corona%20crisis%20%26%20Children%20with%20Special%20Needs.pdf
Directory of Institutions Providing Service for Persons with Multiple Disabilities in India : http://niepmd.tn.nic.in/documents/directory_220520.pdf
About the Author
Ms Arushi Batra is a graduate student at the CSIR Institute of Genomics & Integrative Biology (CSIR-IGIB) and her research focuses on the genomics of Intellectual Disability as part of the GUaRDIAN initiative. All opinion All opinions expressed in this article are personal.
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