Interventions for the Well-Being of Children With Disabilities During a Pandemic: Lessons From COVID-19.

To the Editor,

COVID-19 has disrupted life all around the globe. The governments’ attempts to contain the spread of the virus have adversely affected the health care of children with disabilities (CwDs). These children have greater health care needs and dependence on health care services than other children. Even though these children are not the face of this pandemic, they are at risk of becoming its greatest victims. COVID-19 seems to have had a profound impact on their physical and psychological well-being.[2, 3] The difficulty of accessing the services during the pandemic has put them at a higher risk of exposure, complications, and death because of their underlying and preexisting conditions. Simultaneously, the lockdown and related measures have increased their anxiety and depression and worsened their preexisting mental health conditions.

CwDs, both physical and mental, have had difficulty understanding, absorbing, and dealing with the changes related to COVID-19. Thus, researchers must provide evidence to the policymakers based on the children’s experiences to design interventions for their well-being during a pandemic. These can be designed by systematizing their experiences through the lens of ontology. We propose an ontology (Figure 1) which will help for the same by systematizing the experiences and also develop a roadmap for the research.

Figure 1.

Ontology of Interventions for the Well-Being of Children With Disabilities During COVID-19

The Ontology of Interventions

Changes to or loss of structure, continuity, and security have taken a heavy toll on CwDs, especially those with intellectual and/or psychosocial difficulties. These children can find it difficult to comprehend or cope with changes resulting from COVID-19.

These changes can be in the form of closure, quarantine, and social distancing measures. Closure of schools and daycare centers may have resulted in a shift to online classes and a lack of recreational activities. Quarantine and social distancing lead to a lack of access to socialization and outdoor activities. Social distancing may not be realistic for people who care for CwDs, Because these children generally require therapy or assistance with daily tasks. The changes can also disrupt children’s clinical services, treatment, medical services, and caregiving services. They may have a devastating impact on the psychosocial development of children with disabilities such as autism spectrum disorder.

It’s not just the CwDs but also their parents, families, caregivers, peers, and communities caught in the pandemic. They have faced unique challenges because of COVID-19. For example, the families’ ability to obtain critical medical supplies can become difficult as resources become scarce.

The desired outcomes of the inter- ventions are the physical, psychological (emotional, behavioral), and social well-being of CwDs. These outcomes are captured in the eight combinations of the last two columns of the ontology.

Thus, the required interventions must be designed based on their providers, objectives, and the conditions created by COVID-19. The possibilities are captured in the 72 combinations of the first three columns of the ontology. The providers may be the parents, teachers, special educators, therapists, family, caregivers, peers, or the community; the objectives may be to provide structure, predictability, or security, and the conditions may be of closure, quarantine, or social distancing.

Together, the five columns of the ontology define 576 possible interventions for the well-being of CwDs. For instance, consider interventions by schoolteachers to provide continuity during COVID-19 closure for the psychological–emotional well-being of children with intellectual disability. An instance of the intervention would be to extend schooling arrangements for essential workers’ CwDs. It is necessary to formalize the lessons from COVID-19 to determine (a) the effective interventions and reinforce them, (b) the ineffective ones and redirect them, and (c) the untried ones and test them.

As a quick fix, UNICEF’s instructions for providing resources to CwDs during COVID-19 can be followed. However, a more systematic study will help generate and highlight the immediate and long-term interventions that must be put in place to ensure the physical and psychological well-being of CwDs.