Long‐term impact of COVID‐19 on disabled children

Even with millions of cases, we still have a lot to learn about the coronavirus disease (COVID-19) pandemic and its impact on childhood disability. There were initially high concerns for those with neurological or neuromuscular conditions, who are known to be susceptible to respiratory complications of other viral infections. However, there have been surprisingly few reports of severe COVID-19 in those populations. Hypotheses to explain the apparent paradox are yet to be explored, e.g. underreporting, social factors (limited contacts), behavioural factors (limited environment and face touching), and possibly physiological factors. Yet early societal response to the pandemic can already provide us with some perspective for the future. Very early on, triage protocols were designed in anticipation of, or response to, shortage of hospital or intensive care beds, based on criteria including frailty, comorbidities, expected ‘utility’, or requirement for help with activities of daily living. Many protocols would, more or less directly, deprioritize people with chronic disabilities as a group. Owing to epidemiology, this has not affected disabled children as dramatically as elderly people, many thousands of whom died without receiving appropriate care. Though some aspects of the triage approach relate to COVID-19, general principles and the way they have been applied are not specific. These principles reflect a societal response to a health crisis, with the value of life based on the judgement of a third party and determined according to medical or social categories. Sadly, we must recognize that, as a society, we have failed disabled individuals and reversed some of the progress made in their empowerment. This is worrisome for future crises and calls for pre-emptive action to protect vulnerable individuals. As human rights issues started to arise, additional challenges threatened disabled children. Furthermore, most countries prohibited the continuation of non-urgent service, which in many cases included therapy those children needed. Among notable initiatives designed to mitigate the effect of such measures, telehealth programmes have made it possible to restore some continuity in care and treatment, and address mental health problems that may arise in lockdown or quarantine. Lessons learned from this experience will likely reshape clinical practice for the better in quieter times. Another failure throughout the pandemic has been the lack of international concerted action and strategy, compounded by heterogeneity and complexity of health care systems. In contrast, on a smaller scale, a positive lesson concerns the way we share knowledge and research. Participants in the March 2020 meetings of the Australasian Academy of Cerebral Palsy and Developmental Medicine and the British Academy of Childhood Disability featured successful web-based presentations and attendance arranged for in extremis due to travel restrictions. Subsequent meetings during the pandemic have been organized prospectively as online only (European Academy of Childhood Disability, American Academy for Cerebral Palsy and Developmental Medicine) or hybrid, combining virtual and in-person participation to maximize international exchange of expertise and discussion. Using information and communication technology in this way appears more sustainable beyond the pandemic too, for the benefit of disabled children. The COVID-19 crisis has highlighted how vitally people’s health relies on the preparedness of the public health care system and its response capacity. It has taught us that we cannot succeed unless we have strong collective leadership and effective logistics. A strand of current research on the differential impact of COVID-19 on individuals focuses on the exposome, i.e. lifelong environmental exposures complementing the genome. The exposome comprises external influences as well as endogenous body processes. To understand the impact of phenomena such as this pandemic and effectively work toward a better future, it is urgent to also consider carefully characterized societal determinants of health and the causes of these inequalities.