The COVID-19 pandemic and people with disability

The COVID-19 pandemic is changing public health and health care, likely with permanent consequences. While we have accumulated considerable information through the study of increasing numbers of people who have been contracted or died from the virus, we have learned also how much we still don’t know about the virus. Our national surveillance capability has been inadequate during this pandemic, leaving us with poor appreciation of the prevalence or death rate from infection. We continue to seek specific knowledge about positivity, carrier status, transmission, and virus shedding. Reports have associated older age and multiple chronic conditions, especially hypertension, with increased morbidity and mortality.¹ A variety of manifestations are being reported in both adults and children.2, 3, 4, 5 Pneumonia and difficulty handling secretions are the focus of management in severe disease, with a goal of preventing acute respiratory distress syndrome (ARDS). However, now more complex management includes monitoring cardiac, thrombotic, and vascular endothelial complications.^{3 ,} 6, 7, 8 Clearly we are learning more details about risk for severity and mortality.

Being older and having multiple co-morbidities continues to be the leading indicator of poor outcomes from infection with COVID-19. Hypertension, diabetes, cardiovascular disease, and chronic lung disease have been associated with worse outcomes¹ and obesity, smoking, and male gender have also been implicated.^{9 , 10} Besides people of older age and presence of health conditions, population descriptors identified as more at risk for severe disease include lower socioeconomic status, homelessness, living in densely populated communities, limited access to food, and poor sanitation.¹¹ Racial and ethnic disparities have been reported, with a call to explore public health responsiveness.¹² People with disability belong to a population with a higher prevalence of multiple chronic conditions, disability often results in lower economic status during the adult years and it frequently necessitates living in group communities, and disability status is documented to be associated with disparities in health care. Information about the effect of COVID-19 on people with disability is now due.

Publishing observations of COVID-19 impact in the disability community are now emerging. Reseachers and clinicians have highlighted screening and triage difficulties for people with spinal cord injury (SCI),¹³ and differences in symptom manifestation seen in people with SCI challenge the recognition of COVID-19 infection.¹⁴ They also note the problems people with intellectual and developmental disability (IDD) face when their routines and support systems are disrupted, resulting in behavioral changes.¹⁵ Just as health literacy related to risks of and protection from the virus is important for the general population,¹⁶ so too people with IDD are challenged by health literacy gaps related to new routines and restrictions to activities and changes in the supportive environment.¹⁷ Questions about limiting screening or treatment for people with disability have been reported.^{18 , 19} And for those with new-onset disability or those engaging in outpatient or community-based rehabilitation, there are interruptions in services with possible increase in recovery time or preventable loss of function.²⁰

People with disability are looking for information related to their likely increased risk for significant COVID-19 morbidity and mortality.¹⁹ Resources for people with disability and those who work with them have been collected and are available from a variety of government, advocacy, service, and health policy organizations (e.g., Access Living https://www.accessliving.org/our-services/COVID-19-resources-for-the-disability-community/; Administration for Community Living https://acl.gov/COVID-19; American Association on Health and Disability https://www.aahd.us/COVID-19/; The Arc https://thearc.org/covid/).

To raise the visibility of people with disability and foster discussion about health care needs of people with disability, we have included two articles that discuss COVID-19 among people with disability. Boyle et al.²¹ (Commentary 20–00236) review the U.S. public health response and challenges for people with disability. Turk et al.²² (Brief Report 20–00237) provide an exploratory view of people with intellectual and developmental disability related to morbidity and mortality.

While these manuscripts add to the literature about the preparedness, infection rate, testing, treatment, and mortality for people with disabilities we need to encourage analyses for many different disability diagnoses coupled with many different underlying conditions. Analyses need to take into account living situation, since it is already clear that nursing home populations are at very high risk of spread. There will be many data sources that can be used to identify testing rates, hospitalization rates, and death rates, for each subgroup of the disability community. To better grasp the magnitude of the challenge for people with disability, information about global antigen and antibody testing within different residential settings and among a few disability subgroups is needed. We call upon our authors and readership to consider research approaches to evaluate the ongoing pandemic and to contribute to the understanding of the effect of COVID-19 on people with disability.