By: Fayaz Ahmad Paul, Hemant Kashyap
It is an evident fact that persons with intellectual disability are more vulnerable to exploitation by others compared to others and when the usual community support no longer functions to protect them in a crisis like Covid19, one can assume the spike in such a scenario. The pandemic moved swiftly across the globe infecting millions and testing the health care systems of developed as well as developing countries. In the course of the pandemic, the vulnerabilities of certain groups of people have been highlighted such as the elderly, pregnant women, LGBTQ and the homeless. Very less has been said about the plight of people with intellectual disability who have a range of vulnerabilities that include health problems, mental disorders and social disadvantage. Meeting the need to protect people with intellectual disability from infection and to support those infected is a challenge to care services often because of the unique characteristics of people with intellectual disability to adapt to new circumstances.
The concern of families and their caregivers is that people with intellectual disability may be forgotten as the pandemic unfolds and that responses should not exclude people with disabilities. People with intellectual disability are at greater risk of infection for a range of reasons that include physical health problems, social circumstances, and limitations in understanding. The prevalence of co-morbid physical disorders is higher among people with intellectual disability and their life expectancy is lower than that of the general population. People with intellectual disability and genetic disorders may suffer from hereditary cardiac, inborn errors of metabolisms, or respiratory conditions. Respiratory infections are the leading cause of death in people with intellectual disability especially among people with Down syndrome. The level of obesity is higher among people with intellectual disability raising their risk of experiencing severe forms of infection with Covid- 19.
People with intellectual disability live in a range of models of accommodation such as care homes, supported living placements or hospital in-patient services that are essentially congregated settings. Many live with family members who are elderly parent caregivers whose health status is often compromised. In community people with intellectual disability often require high levels of support from family members or paid caregivers that increases their level of social contact. In times of pandemic, people with intellectual disability are likely to have difficulty in advocating for themselves and rely on others to keep them safe from infection. For those with mild intellectual disability who function in the community with little support, their cognitive ability may hinder their adherence to public health measures to reduce the spread for example, self-isolation, hand-washing, or physical distancing from others. Such social behavioural demands can be difficult to understand and to implement especially for those with behavioural challenges such as spitting that can pose increased risk to other people with intellectual disability and their caregivers.
Among the persons with Autism, self-isolating and physical distancing can heighten their level of stress because of a change in habits and they may become over-focused and subsequently overwhelmed by the amount of information related to Covid-19 in the media and on social media. Such behaviour may heighten their levels of anxiety and paranoid thinking leading to difficulties in their behaviour thus further reducing the ability to practice social distancing behaviours. Stress associated with the fear of contracting the illness, social distancing and quarantine measures in place can have an impact on the mental health of some people. The mental health of people with intellectual disability can be affected in similar ways, if possibly with greater impact because of the demands of quarantine potentially triggering problem behaviours. Autism or ADHD in a person with intellectual disability may worsen the situation where their usual routines cannot be fulfilled and with restrictions on their physical environment.
Caregivers of people with intellectual disability may need to self-isolate that can lead to breakdown of the person’s care network resulting in exacerbations of behavioural problems. Increased anxiety and paranoia can be seen in exceptional circumstances such as in the 2020 lockdown. People with intellectual disability and autism can become obsessed about information related to Covid-19 which would be understandable given that obsessional thinking and obsessive compulsive disorders are common among people with Autism. It may lead to excessive levels of anxiety and paranoid thinking resulting in behavioural challenges.
The rise in domestic violence in the general population during the pandemic should alert services to the potential of greater risk to people with intellectual disability. The immediate effects of the pandemic on people with intellectual disability are unknown at present since on infection with Covid-19 specific to people with intellectual disability is not available. The long-term effects of the virus on the health of people with intellectual disability can only be speculative such as the potential impacts of Covid-19 on neonates and unborn children are uncertain. The social impacts of the pandemic are evident at present but what of the long-term consequences of it on health and well-being. The potential impact on population mental health is evident but it is not certain how the experience of the pandemic will affect people with intellectual disability who may experience the social upheaval in unique ways to other populations. For clinical staff like Psychiatric social workers, Clinical Psychologists and Psychiatrists supporting people with intellectual disability, new ways of working are likely to be adopted optimizing the use of technology in delivering clinical care that could lead to more efficient and streamlined services.
Covid-19 has had profound effects on populations worldwide. Attention has focused on those most physically affected by the pandemic. The experiences of the pandemic by people with intellectual disability need to be elicited in order to understand the impacts on their lives and how they have protected themselves from infection. It is essential that we learn from the pandemic on how to protect people with intellectual disability on account of their inherent vulnerability to infection and to the social consequences of the measures put in place to manage the pandemic. When the time comes to review the course of the pandemic 2019, it is important that people with intellectual disability and their caregivers are not ignored in order to ensure they are empowered to face such occurrences in the future.
The writers are research scholars
