During the COVID-19 pandemic, many people with disabilities have faced a disproportionate risk of COVID-19 exposure, serious illness, and death. While data collection in the U.S. is less comprehensive, a recent study from England outlines the scope of the problem, finding that people with significant disabilities were three to four times more likely to die of COVID-19 than people without disabilities of the same age. Disabled Black, Indiginous, and People of Color (BIPOC) are particularly at risk of infection and poor outcomes. Notably, not every person with a disability is necessarily at high risk of COVID-19 exposure and severe illness—however, a significant proportion are.
The COVID-19 vaccines are a tremendous feat of modern medicine, but supplies remain extremely limited. As such, states must make difficult and consequential choices about how to allocate their limited vaccine doses. Given the devastating impact of the pandemic on people with disabilities, people with disabilities who are at high risk of COVID-19 exposure or severe illness should be among those prioritized for the vaccine. Immunizing people with disabilities may also be important for broader population health; researchers theorize that long-term COVID-19 infections in people who are immunocompromised may give rise to new COVID-19 variants. However, many states have not appropriately factored disability into their vaccine prioritization plans, leaving people with disabilities at continued risk even as states begin to lift restrictions.
Prioritization of Individuals who Receive Long-Term Services and Supports
The federal Advisory Committee on Immunization Practices recommends prioritizing “long term care facility residents” and “health care workers” in phase 1a. While all states have implemented that recommendation, state definitions of “long term care facility residents” and “health care workers” have varied widely. While all states include nursing facilities as “long term care facilities”, and most also include assisted living facilities, many state plans do not mention other congregate settings at all or give them lesser priority than nursing facilities. Further, few prioritize individuals receiving home and community based services (HCBS), and most do not explicitly prioritize all direct support providers as “health care workers”, including family caregivers.
Many people with disabilities receive long-term services and supports, either in congregate settings (such as group homes and intermediate care facilities), or at home. While data on the impact of COVID-19 on congregate settings has largely focused on nursing facilities, research has found that adults with disabilities who live in other types of congregate settings also have an extremely elevated risk of COVID-19 infection and death. Other individuals receive HCBS, where they still face increased exposure risk due to close contact with direct support professionals (many of whom also work in nursing facilities), and elevated mortality risk from the virus. Therefore, individuals receiving long-term services and supports in any setting should be prioritized for vaccination.
North Carolina provides an example of the importance of continued focus on this area. As the vaccine rollout began, the state considered a relatively broad list of congregate settings to be “long term care” in the states’ highest priority group. However, the state did not prioritize people receiving HCBS (other than a very limited exception for shared housing where multiple people with intellectual and developmental disabilities receive HCBS), ignoring the extremely high risk of COVID-19 exposure and serious illness in this population. After substantial advocacy from the disability community, North Carolina reversed course on March 2, retroactively revising the state’s definition of long term care. Now, individuals who receive “long-term home care for more than 30 days including Home and Community-Based Services for persons with intellectual and developmental disability, private duty nursing, personal care services, and home health and hospice” also qualify in the state’s highest priority group.
Prioritization of People with High-Risk Conditions
One major point of variability across states is what phase people with high-risk chronic conditions are vaccinated in. According to the Kaiser Family Foundation, states are all over the map: as of February 15, 1 state included high-risk conditions in phase 1a, 21 included them in phase 1b, and 15 included them in phase 1c.
Unfortunately, states such as Connecticut and Maine have done away with prioritizing vaccines for frontline workers or people with high-risk conditions. Instead, to simplify their vaccination plans, the states are prioritizing only by age (with Connecticut also offering priority to educators). The chair of the federal Advisory Committee on Immunization Practices spoke in strong opposition to the age-based approach, saying “it’s an easier way to vaccinate, but it abandons any effort to use equity as a guiding principle.” This strategy will likely exacerbate racial disparities. Many BIPOC—particularly Black and Indiginous Americans—are more likely to be disabled and have high-risk conditions than Whites, develop chronic health conditions at younger ages, and have shorter lifespans overall. In Connecticut, disability rights and legal services groups have filed multiple complaints with the federal Office of Civil Rights over the state’s new plan, arguing that it constitutes illegal racial and disability discrimination.
Given the limited vaccine supply, in some cases it may make sense for states to spread people with high-risk conditions across multiple phases, first prioritizing a smaller group with specific conditions that place them at extremely high risk. For example, in South Dakota, individuals receiving dialysis, post-transplant, or with active cancer are eligible before other people with high-risk medical conditions. However, due to lack of evidence and federal guidance, it may be difficult for states to identify which conditions should be most prioritized.
Definition of High-Risk Conditions
Deciding which chronic conditions count as “high-risk” for the sake of vaccine prioritization is challenging, but critical. As the pandemic has unfolded, the Centers for Disease Control and Prevention (CDC) has published and updated a very limited list of medical conditions that the “strongest and most consistent evidence” supports as increasing the risk of severe COVID-19. They also maintain a second short list of certain conditions that might increase severe COVID-19 risk, but that do not yet meet the CDC’s “strongest and most consistent evidence” standard.
These lists are clearly insufficient to set state vaccine policy for people with disabilities and chronic conditions. Rare conditions, for example, are largely not included in the lists—even diseases that would seem to significantly increase risk, such as respiratory disorders. The CDC acknowledges these shortcomings and makes clear that these lists were not intended to guide vaccine prioritization. However, as the CDC provides no clear alternative approach, states have largely based their prioritization schemes on these flawed CDC lists.
Due to the void of federal guidance, there is enormous variability between states around which conditions are prioritized. Some states prioritize only the few conditions on the first CDC list, while others also include conditions on the second list. Some include most or all of the conditions on the CDC lists, prioritizing the majority of the people in their state. For example, the CDC lists include everyone whose body mass index is considered “overweight” or “obese”, which describes nearly three-quarters of the country. In contrast, some states remove certain conditions from their list, often without a clear and public decision-making process, or have not published their list of qualifying conditions at all.
A few states, such as Mississippi, allow medical providers to use their discretion to identify individuals with high-risk conditions not on the state lists—a positive step, albeit one with barriers that may still leave many people behind. Importantly, a few states have also gone beyond narrow lists and acknowledged the disproportionate impact COVID-19 has had on the disability community writ large. For example, Illinois recently added all persons with disabilities to the phase for people with high-risk conditions.
Throughout the entire pandemic, people with disabilities have been ignored. Their deaths have often been dismissed, with non-disabled people reassuring each other that COVID-19 only severely impacts older adults and the “immunocompromised”. They have also been left behind in the policymaking process; Congress only provided dedicated funding to support HCBS a year into the pandemic. Now—particularly as many states lift restrictions, putting people at increased risk of infection—states and advocates must ensure that individuals with disabilities are not left behind in vaccine prioritization plans.