Reply to Russo and Trabacca

We thank Drs. Trabacca and Russo for their reflection and comments about childhood disability and the ethics of care during the exceptional circumstances of a viral pandemic.¹ We recognize the many social, educational, environmental, and health care disruptions that coronavirus disease 2019 (COVID-19) has imposed on the routines of all children. Such disruptions are often disproportionately stressful to the families of children with neurodevelopmental and neuromuscular disabilities, whose “nonessential” community-based support services are restricted because of the imperatives of physical distancing.

Drs. Trabacca and Russo reflect on the concepts of disability and the need for continuous disability-related care and rehabilitation as well as the relative urgency of providing such care depending on need, acuity, and other factors unique to each child and family.² Such concepts are consistent with normative ethical theories. We agree about the importance of striking a balance between the provision of care and the need to protect vulnerable individuals to minimize morbidity and mortality resulting from COVID-19.

We are witnessing many changes in social norms and care standards during the first six months of the COVID-19 pandemic—some obligatory and some recommended, but left to the discretion of individuals. The general precautions that apply to all families (i.e., physical distancing, restricted socialization, “shelter in place,” and “distance learning” school routines for children) seem to be intuitively practiced at heightened levels to better protect children with chronic conditions and disabilities—especially those who are immunosuppressed or have compromised respiratory function. These instinctive precautions appear to be similar to those taken for the elderly, who are clearly at higher risk from SARS-CoV-2 infections. Limited data from the earliest phase of the pandemic suggested that children are less affected by SARS-CoV-2 infections—even those children with underlying chronic medical and neurological conditions. Newer data show that children and adolescents with intellectual and developmental disabilities (IDD) have higher case fatality rates (1.6%) compared with those without IDD (<0.01%).³

These trends are similar to the experience of 2009 influenza A (H1N1) viral pandemic, when children with disabilities had higher morbidity and mortality risks. In one cohort of pediatric deaths associated with H1N1, two-thirds (67%) had one or more high-risk medical conditions, and within this group 92% had high-risk medical conditions with neurodevelopmental disabilities.⁴ Even during typical influenza seasons, a substantial number of influenza-associated deaths occur in children, of whom one-third (33%) have chronic neurological or neuromuscular conditions such cerebral palsy, epilepsy, and developmental encephalopathies.⁵

We are also witnessing the racial, ethnic, and socioeconomic disparities in COVID-19 morbidity and mortality, which should lead to a new calling to advance social justice and improve public health services. For example, people with IDD with chronic health conditions are more likely to experience poverty with advancing age necessitating group living and disproportionate risks from infectious diseases.

Because of the heightened risks for many people with disabilities, emerging from this current pandemic will require a cautious balance between the safe resumption of educational routines, supportive therapies, and rehabilitation (i.e., easing of physical distancing) and the ongoing need of enhanced protections (e.g., mask-wearing) until COVID-19-related herd immunity can be achieved.