Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities
A Monumental Challenge:
Calculating the Pandemic's Public Health Toll
The COVID-19 pandemic has highlighted that people with intellectual and developmental disabilities (IDD) are not well identified in our acute care and public health systems. In general, health care providers, public health officials, and policy makers have little information or education about the needs of people with IDD. The lack of clinical knowledge about and skills related to disability among providers, as well as limited public health surveillance on this population, render people with IDD an invisible and vulnerable population with respect to health disparities. This lack of knowledge has persisted during the pandemic, as indicated by the very few data-driven, peer-reviewed articles published on COVID-19 trends among people with IDD. Evidence of disparities and identification of discrimination against people with disability appears in media and in advocacy organization surveys. Empirical evidence needed to advocate for change has been incomplete, however, and because effective policy determinations are based on data analysis, people with IDD have not received much attention from national or state administrations, especially early in the pandemic.
A few data-driven reports have attempted to better define the issues of people with IDD related to the pandemic. These publications use a variety of databases because there is no U.S. national surveillance system that identifies disability. Data has been collected through advocacy and residential service providers (Landes et al., Under review; Landes et al., 2020a; Landes et al., 2020b) online state publicly reported data (Landes et al., 2020c), and international registries (Clift et al., 2020; Sterker Op Eigen Benen, 2020). Data has been analyzed using an international real-time electronic medical records database, the TriNetX COVID-19 Research Platform (Turk et al., 2020). Using these available data sources, an emerging body of information attempts to better define the risks for people with IDD related to the pandemic:
A study using the global TriNetX data from May 2020 noted people with IDD have a high prevalence of the pre-existing conditions associated with adverse outcomes from the SARS-CoV-2 virus, and at least early in the pandemic, had higher case-fatality rates (rate of death among those diagnosed with COVID-19) at younger ages (Turk et al., 2020).
Data on people with IDD living in residential group homes from New York Disability Advocates, a coalition of organizations that serve and support individuals with IDD in the state of New York, were analyzed and compared to the general New York state data. People with IDD living in residential group homes demonstrated a rate of infection that was 4.1 times higher and a case-fatality rate 1.9 times higher compared to the general state population (Landes et al., 2020a,b).
In an attempt to define the contributions of congregate living and higher medical and personal support, analysis of California Department of Developmental Disabilities Services publicly available data (all residential options, including own/family home) was completed. Overall, Californians receiving IDD services showed risk ratios that were 60% lower for the case rate, but 2.8 times higher for the case-fatality rate. Further analysis noted clear distinctions related to the number of residents in the setting and the level of personal and medical services. The highest case rates were in settings with 15 or more residents (all intermediate care facilities, skilled nursing facilities). The highest case-fatality rates occurred in intermediate care facilities-nursing and skilled nursing facilities, where skilled nursing service was provided 24 hours per day (Landes, et al., 2020c). (See Figure 1).
A study in the United Kingdom using a population-level primary care database estimated a 4-fold increased risk for COVID-19-related hospitalization and a 10-fold increased risk for COVID-19-related death in persons with Down syndrome (Clift et al., 2020). Additional studies confirm that people with Down syndrome have a higher risk for infection and fatality (Clift et al., 2020; Landes et al., Under review).
Similar to the general population, evidence from multiple studies found that older age and certain health conditions predispose people with IDD to higher COVID-19 infection and/or fatality (Henderson et al., 2021; Landes et al., Under review; Sterker Op Eigen Benen, 2020; Turk et al., 2020).
For this article, we compared the overall case-fatality rate (number of deaths/number of cases) for people with IDD across 10 U.S. jurisdictions publicly reporting data through early January 2021 (Arizona, California, Connecticut, District of Columbia, Illinois, Maryland, New Jersey, Pennsylvania, Virginia, Washington) to the overall case-fatality rates for the population of the 10 states for the same time period. The case-fatality rate for people with IDD in the 10 jurisdictions was 4.59 compared to those without IDD at 1.76 (See Figure 2). Across these 10 U.S. jurisdictions, people with IDD were 2.6 times more likely to die from COVID-19.
Although we have accumulated information about the risks and outcomes for people with IDD related to the pandemic over the past year, there remain a number of questions. Data about people with IDD who live at home is inadequate, resulting in limited ability to understand trends among that segment of the population. While larger congregate settings and high personal/medical needs have been identified as impacting outcomes, details related to the associations of age, disability condition, specific pre-existing conditions, or specific personal/medical supports within these milieus need further exploration. Particulars about hospitalizations (e.g., length of hospital stay, intensive care unit length of stay, use of ventilatory support) are also limited.
Acquiring even the limited information we have has been a monumental challenge. There are no U.S. registries for people with IDD, and disability is not required to be identified in information submitted to states related to the pandemic, or other surveillance programs. There is required data collection within developmental disability service systems and funding programs within states, but only a few states publish that data, and most provide data in aggregate formats that do not allow for detailed comparisons. Among those states that do report data, basic demographic characteristics (age, gender, race-ethnicity), place of residence, number of residents and level of services, and social determinants of health are rarely reported. There is no consistency and little transparency in reporting. As a result, the data needed to guide healthcare decisions is difficult to find and analyze.
Additional challenges arise from medical care providers’ and public health leaders’ limited knowledge related to disability support system. This likely contributed to unfortunate early decisions about care protocols and procurement of personal protective equipment (PPE). Medical care providers and public health leaders often are not aware that many people with IDD require close personal contact for their needs, may have multiple personal care attendants or nursing personnel, may have difficulty wearing masks or maintaining safe distances, and often participate in group activities outside of the residential setting. Additionally, many clinicians are unaware that congregate residential settings have limited or no available medical equipment, health screening, or testing. Individual and organizational resourcefulness sometimes resulted in successfully procuring PPE, as reported by some media, but it did not occur in all cases.
The results of rigorous data analysis conducted by researchers utilizing the data that has been available on COVID-19 outcomes for people with IDD has been effective in informing public health plans for prevention and mitigation efforts (National Academies of Sciences & Medicine, 2020). Fortunately, many state plans for vaccination did recognize that people with IDD living in congregate settings needed to be at a high priority level, especially those with Down syndrome. Not all states followed this prioritization, however, or included direct support professionals and other types of care providers, who have close personal contact with some residents (Johns Hopkins, 2021). Additionally, because there was no discreet information about people with IDD who live at home, they were typically not included in vaccination priority plans.
Public health emergency preparedness plans have attempted to respond to unfolding events and will continue to undergo modifications. People with IDD, and those who provide their supports, require more visibility and understanding by acute care and public health systems, and society as a whole. In order for national systems to respond to the current crisis and prepare for future events, we recommend organized advocacy for the following points:
Acknowledge that people with disability experience health disparities and must be included in diversity plans. People with IDD have documented persistent health care disparities (Krahn & Fox, 2014), and within some sectors of acute and public health are recognized as a vulnerable health population. This concept has not penetrated overall national public health planning and the larger social agenda, however.
Improve surveillance that includes people with disability. The U.S. health surveillance system does not require reporting of disability status. When data is reported, there is no standardization, preventing meaningful outcomes comparison. Better data about disability and other health determinants could lead to improve outcomes.
It is our hope that the lives of people with IDD unnecessarily lost during the pandemic will not be in vain, but will serve as a clarion call.
Consider the healthcare needs of people with IDD in emergency preparedness plans. A lack of understanding by policy leaders and healthcare professionals results in a one-size-fits-all response plan. People with IDD may not be able to follow standard health protocols, as in the case of the COVID-19 pandemic. Plans must take into account residential setting, support staff, medical needs, personal supports, and availability of resources.
Require education about disability for healthcare and public health workers. This is a standard that has not been totally embraced by healthcare and public health professionals’ education organizations. While there is mention of people with disabilities related to cultural competencies and acknowledgment of health disparities, there are no clear requirements related to acquiring knowledge and skills to best meet the needs of this population.
This pandemic has underscored that people with IDD are a vulnerable health population. It appears that, people with IDD, especially those living in congregate settings and/or needing increased care, have been disproportionately impacted by COVID-19. It is our hope that the lives of people with IDD unnecessarily lost during the pandemic will not be in vain, but will serve as a clarion call to immediately address the profound barriers that often prevent people with IDD from receiving sufficient attention and care.
People With Developmental Disabilities Overlooked During Covid-19 | In this video from CBS News, authors Turk and Landes discuss their research into how people with disabilities have been disproportionately affected by COVID-19.
Clift, A. K., Coupland, C. A. C., Keogh, R. H., Hemingway, H., & Hippisley-Cox, J. (2020). COVID-19 mortality risk in down syndrome: Results from a cohort study of 8 million adults. Annals of Internal Medicine, 0(0), null. https://doi.org/10.7326/M20-4986
Henderson, A., Fleming, M., Cooper, S.-A., Pell, J., Melville, C., MacKay, D., & Kinnear, D. (2021). COVID-19 infection and outcomes in a population-based cohort of 17,173 adults with intellectual disabilities compared with the general population. MedRxiv. https://doi.org/10.1101/2021.02.08.21250525
Johns Hopkins University Disabiltiy Health Research Center. (2021). COVID-19 vaccine prioritization dashboard. Retrieved from https://disabilityhealth.jhu.edu/vaccine/
Krahn, G. L., & Fox, M. H. (2014). Health disparities of adults with intellectual disabilities: What do we know? What do we do? Journal of Applied Research in Intellectual Disabilities, 27(5), 431–446. https://doi.org/10.1111/jar.12067
Landes, S. D., Turk, M. A., Damiani, M. R., Proctor, P., & Baier, S. (under review). Risk factors associated with COVID-19 outcomes among people with intellectual and developmental disabilities receiving residential services.
Landes, S. D., Turk, M. A., Formica, M. K., & McDonald, K. E. (2020). COVID-19 trends among adults with intellectual and developmental disabilities (IDD) living in residential group homes in New York state through July 10, 2020. Retrieved from https://lernercenter.syr.edu/wp-content/uploads/2020/09/Landes_ResearchBrief_Final.pdf
Landes, S. D., Turk, M. A., Formica, M. K., McDonald, K. E., & Stevens, J. D. (2020). COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York state. Disability and Health Journal, 13(4), 1–5. https://doi.org/10.1016/j.dhjo.2020.100969
Landes, S. D., Turk, M. A., & Wong, A. W. W. A. (n.d.). COVID-19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs. Disability and Health Journal, 1–5. https://doi.org/10.1016/j.dhjo.2020.101051
National Academies of Sciences, E., & Medicine. (2020). Framework for equitable allocation of COVID-19 vaccine. Washington, DC: The National Academies Press.
Sterker Op Eigen Benen. (2020). Factsheet no. 3: COVID-19 in people with intellectual disabilities. Nijmegan, Netherlands.
Turk, M. A., Landes, S. D., Formica, M. K., & Goss, K. D. (2020). Intellectual and developmental disability and COVID-19 case-fatality trends: Trinetx analysis. Disability and Health Journal, 13(3), 1–4. https://doi.org/10.1016/j.dhjo.2020.100942