Vaccine Allocation Confusion

Are Vaccines Even Accessible?

Tracy Waller, Esq., MPH, is an attorney with the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute as part of the MCDD’s grant to develop a Center for Dignity in Healthcare for people with Disabilities (CDHPD).

Vaccine Prioritization Decisions

If you are confused about the vaccine allocation priority groups in your county or state, you are not alone. The Centers for Disease Control and Prevention (CDC) is providing recommendations to federal, state, and local governments about who should be vaccinated first. The CDC’s recommendations are based on those from the Advisory Committee on Immunization Practices (ACIP), an independent panel of medical and public health experts. The ACIP’s vaccine allocation recommendations aim to: (1) decrease death and serious disease as much as possible, (2) preserve functioning of society, and (3) reduce the extra burden COVID-19 is having on people already facing disparities. 

States as Decision-Makers: People With Disabilities Affected Disproportionately 

While the CDC makes recommendations for who should be offered the COVID-19 vaccine first, each state has its own plan for deciding who will be vaccinated first and how its residents can receive vaccines. So, if it seems like your state hasn’t updated its website recently, or has gone “rogue” with its prioritization, you are probably right on both counts. The ACIP’s, and therefore the CDC’s,  recommendations exclude large groups of people with disabilities. People with disabilities continue to face increased morbidity and mortality from COVID-19. However, many states are still failing to prioritize people with disabilities in their vaccine allocation plans, and some states have even removed people with high-risk medical conditions from the priority list

Rather than including all people with disabilities, state allocation plans are using inconsistent definitions with language that is difficult to decipher. For example, who is included in “long-term care facility residents”? Current CDC recommendations ignore a majority of people with disabilities by only prioritizing people with disabilities living in congregate care or calling out only one specific diagnosis within a subgroup. For example, Down syndrome has recently been added to the list of “conditions [putting people] at an increased risk of severe illness from the virus,” but people with other intellectual or developmental disabilities are left off this list. And although some states have included people with intellectual and developmental disabilities, most have excluded people with physical disabilities and sensory disorders. 

Inconsistencies Within States

Figuring out your state’s vaccine allocation plan can be difficult for many. Many states don’t highlight their vaccine prioritization and eligibility links, embedding them within other information. And once you find the information, it can be inconsistent. For example, in Nevada, the state may make recommendations, but each county has its own COVID-19 vaccine distribution plan. A list of current vaccine-eligible categories of residents can be found on Page 3 of Nevada’s “COVID-19 Playbook,” as well as on immunizenevada.org, a separate website. Although long-term care facility residents are not included in either of these lists, the Playbook, at the top of Page 4, does include “Long Term Care Facility Staff & Residents” in a list of “Vaccination Priority Group Descriptions.” So, are you included if you are a long-term care resident, or not? 

Maryland lists its priority groups for all phases in a two-page PDF infographic last updated January 14, 2021, and in a one-page pyramid infographic PDF. Other than people living in group homes, people with disabilities are not listed on either of these pages. Yet a third webpage lists Phase 1B as including “Individuals with intellectual and developmental disabilities.” 

Nevada and Maryland are only two out of many examples of states with many inconsistencies occurring within them. However, thanks to a partnership between the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities, the vaccine COVID-19 Vaccine Prioritization Dashboard is now available to help people with disabilities determine when they might be eligible for a vaccine in their state.

Lack of Access—State Websites 

Title II of the Americans with Disabilities Act (ADA) requires state and local governments and governmental entities receiving federal funding to provide qualified individuals with disabilities with equal access to their programs, services, and activities. Many people use assistive technologies to browse the internet. This includes screen readers that vocalize the text on each page, speech recognition software that converts speech into text, Braille terminals, and even alternative keyboards that accommodate individuals with disabilities. However, many states’ vaccination websites are difficult to navigate, even without assistive technology, making them also inaccessible. The websites fail to include headers structuring content, links are hidden within text, and graphics are difficult to interpret and do not include alternative text. Many states provide information hidden within PDF documents. Although some states’ websites include graphics for those who may not be able to read or who are non-English speakers, most of the graphics are also buried within difficult-to-find webpages.

There are, however, some states, such as Oregon, that offer a Health Information Center number to contact for the website information to be provided in alternative formats. But others make the process confusing and inaccessible. For example, in Idaho, residents have to determine their public health district from a PDF document and then call the number that corresponds to their district to make an inquiry about vaccine eligibility and to be notified when a vaccine is available. The state COVID-19 vaccine website also directs its residents to two pharmacies, Albertsons and Walmart, to find out more information and schedule an appointment. Many of the pharmacy websites are difficult to access and require users to refresh appointment pages multiple times, making them impossible to use with assistive technologies. 

Lack of Access—Vaccine Sites

It’s not just vaccine information that’s inaccessible—so, too, are COVID-19 vaccination sites. It is not uncommon to hear about people waiting overnight or for hours in their cars for the chance to get vaccinated, making those sites inaccessible to many people, especially for those who require healthcare or treatments throughout the day. Many mass vaccination sites are also drive-up only and inaccessible to people without cars, who do not drive, whose family members do not drive, or who reside in settings that do not provide transportation. Other sites are inaccessible to people who require wheelchair assistance.

While most states fail to accommodate people with disabilities at their vaccination and testing sites, some states are trying. For example, Minnesota’s website provides some ideas and examples for how to make testing and vaccination sites more accessible.

The majority of people with disabilities face an uphill battle for qualifying for vaccinations, accessing vaccination website information, making appointments, and finding accessible vaccination sites. If the CDC goals for the COVID-19 vaccine are to “[d[ecrease death and serious disease as much as possible, [p]reserve functioning of society, and [r]educe the extra burden COVID-19 is having on people already facing disparities,” we need to focus on vaccine accessibility. For a group that continues to face increased morbidity and mortality from COVID-19, we need to do better.

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