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July 31, 2020 | Sujay Agrawal

More difficult for children with intellectual and developmental disabilities?

A TIME OF COVID-19

The novel Corona virus has taken over the world in a matter of months. Covid-19 has been shown to pose a ‘greater risk’ to several subpopulations such as older persons and people with underlying health conditions. An additional subpopulation rendered vulnerable by the pandemic is persons with disabilities. Reports suggest that children with developmental disabilities such as Autism, Down Syndrome, Cerebral Palsy and Intellectual Disability are as vulnerable to coronavirus as the elderly.

Children with intellectual and developmental challenges are susceptible to get infected with Covid-19 because of their inability to process and fully understand the preventive measures that could help prevent infection. The especial vulnerability of children with disabilities may also be the result of underlying health conditions. In New York, the rate at which persons with intellectual and developmental disabilities contracted the virus is 2.5 times the rate of other individuals.ⁱ While the elderly and persons with underlying health conditions have been the target of attention, the category of children with intellectual and developmental disabilities has not received adequate consideration.

The incidence of death for persons with disabilities has also been higher than it has been for other individuals, as data from Pennsylvania shows.ⁱⁱ In Pennsylvania, the same study shows that the rate of death due to Covid-19 amongst people with Autism and Intellectual Disability is twice as compared to other individuals. Although not much is known about the situation in India due to lack of study, it is beyond doubt a cause of concern that requires attention.

EFFECTS OF LOCKDOWN PERIOD ON CHILDREN WITH INTELLECTUAL AND DEVELOPMENTAL CHALLENGES

The higher rate of infection among persons with disabilities causes parents to panic regarding their children’s wellbeing. They are forced to prohibit their children from venturing out, even when the rules for lockdown have been relaxed. For children whose overall development depends fundamentally on their one-to-one interaction with people, the pandemic poses a very difficult time. This demands recognition of the risk factors that make them vulnerable to the virus. One needs to recognize that the disability, alongside a combination of the health conditions, together with isolation hinders the development of the child. Not being able to engage in in-person interactions and therapy certainly adds to the pile of problems. This may give lead to challenging behaviour especially for children with developmental disabilities.

Furthermore, nuanced information on safety measure in this pandemic must be hard for children with intellectual and developmental challenges to process. Difficult as it is for others, children with challenges find it difficult to follow rules like wearing masks, not touch their faces, keep a distance of 1-2 metres at all points of time as they step out, sanitize their hands as and when they touch anything and so on, with consistency.ⁱⁱⁱ Expecting children with challenges to learn these new ways of living quickly, although necessary, is particularly tough. Children with intellectual and developmental challenges are often alienated, prone to loneliness and social ostracisation. Several programs like day care, group homes, drop-in-centres and home health aids that help them overcome such problems are either unavailable to them due to lockdown, or are not open for visitation from parents and friends making them liable to paranoia.

One way to overcome the difficulties faced by children is using social stories. Social stories are stories communicated in a very simple language. They are short descriptions of a particular situation, event or activity, which include specific information about what to expect in that situation and why.^iv Social stories have played an important role in helping children with intellectual and developmental challenges develop self-care skills, cope with changes to routine or unexpected events and behavioural challenges. In the current context, such social stories could help children learn the new norms of wearing masks often, maintaining social distance, using sanitizers and similar precautionary practices.

Governments must ensure sufficient availability of both human and material resources, made accessible in home-based and group-based care centres. Furthermore, all the citizens of the country must come forward to promote social inclusion, and address the challenges faced by children with intellectual and developmental challenges, restoring a hospitable environment for them.

ENSURING EDUCATION TO CHILDREN WITH INTELLECTUAL AND DEVELOPMENTAL CHALLENGES

All schools and Universities have shifted their sessions online. Classes are conducted virtually, and everybody is expected to adapt. However, we have completely overlooked the dilemma of children with intellectual and developmental disabilities who find it difficult to adapt to the new virtual world. Delay in imparting the education to children with intellectual and developmental challenges will not only halt the progress that is necessary for them, but also changes their day schedule leading to increase in challenging behaviour. Children with special needs often struggle with short attention spans that limit their engagement online for efficient learning. The shift from classroom teaching to virtual teaching seems to have added to this pre-existing divide.

A possible solution could be to have special education teachers assigned for virtual classes that include children with intellectual and developmental challenges. This would require adopting different strategies for differently oriented individuals. While formulating new policies to impart education in such harrowing times, age group and educational requirement of different disabilities should be the primary criteria to be considered. The content and resource materials for the learning should be recorded and made easily accessible. These resources should also be made available to the caregivers of the children in addition to live sessions that help them understand how to efficiently handle children with intellectual disability during a pandemic.

The challenges faced by children with intellectual and developmental disorders can also be addressed through webinars conveying awareness and educational programs. The webinars would help address issues of online learning for children with intellectual and developmental disabilities, looking out for dangers like cyber-bullying, trauma and of transitioning back to school post lockdown.^v These webinars could also help to initiate a dialogue on the steps needed for a more inclusive society in the post pandemic world.

THE WAY FORWARD

The ‘new normal’ has set in and no one is left untouched. Caregivers of children with intellectual and developmental challenges must make changes in their lifestyle to make room to cope with challenges in the present, trying times. The most useful way of doing this is through the use of visual aids. Furthermore, since the child is presently unable to interact with the outside world, parents must make sure that they spend enough quality time with their children. Specialists and experts may be consulted to ensure that the personality development of the child is not halted. Parents should also ensure that psychologists, therapists, pathologists and teachers are within easy access for the child to cope smoothly. Virtual communication with and guidance from experienced professionals can really help with providing the right kind of approach in such precarious circumstances.

It is obvious that coping with the sudden changes wrought by the pandemic is very hard for children with challenges. This is in no way, an exhaustive list of how things should be approached, but could be the beginning of a list that parents/ caregivers can work towards. The outcome is to ensure that such unprecedented circumstances do not become an impediment to the overall development of children with intellectual and developmental challenges.

About the author

Sujay Agrawal is a student pursuing BALLB (Hons.) from Symbiosis Law School, Pune. His areas of interest lie in Corporate and Criminal Law. He has worked as an intern at Amrit Foundation of India.

REFERENCES:

i. Camero K. (2020), Covid-19 kills Children with Intellectual Disabilities at Higher rates. Here’s Why. Miami Herald. Available at https://www.miamiherald.com/news/coronavirus/article243470691.html [Accessed 21 June 2020]

ii. Ibid.

iii. Levine H. (2020), As the country opens up, Children with disabilities are getting left behind. The New York Times. Available at https://www.nytimes.com/2020/06/10/parenting/coronavirus-children-disabilities.html [Accessed 21 June 2020]

iv. Accessed at: https://www.autism.org.uk/about/strategies/social-stories-comic-strips.aspx

v. Accessed at: https://oakland.edu/oumagazine/news/SEHS/2020/ou-webinar-series-helps-families-support-children-with-autism-during-pandemic