Ensuring Equitable COVID-19 Vaccination for People With Disabilities and Their Caregivers

Up to 26% of US adults live with a hearing, vision, cognition, mobility, self-care, or independent living disability.^1,2 Most people with disabilities are not inherently at elevated risk for becoming infected with or having severe illness from viruses such as SARS-CoV-2, the virus that causes COVID-19. However, some people with disabilities might have an elevated risk of infection or severe illness because of their underlying medical conditions or systemic health and social inequities. ³ As such, understanding barriers to equitable COVID-19 vaccination for people with disabilities and ways to address those barriers is a timely public health objective.

In February and March 2021, members of the Centers for Disease Control and Prevention (CDC) COVID-19 Response Team spoke with 32 state directors of developmental disabilities services, state disability council associates, and other education and government officials from 20 jurisdictions. Interview participants were recruited from the National Association of State Directors of Developmental Disabilities Services. Interviews consisted of 3 open-ended questions: (1) What are the challenges of vaccinating people with disabilities in your jurisdiction? (2) How are those challenges being addressed? and (3) What supports does your jurisdiction need from CDC? Responses were recorded by at least 2 authors. The first author then reviewed responses for common themes and tallied responses to determine the most common themes. Results were reviewed and approved by all authors and the CDC COVID-19 Response Team.

This commentary outlines the most common challenges to equitable COVID-19 vaccination reported by respondents and ways jurisdictions addressed those challenges. We conclude that people with disabilities face unique barriers to COVID-19 vaccination. Using, enhancing, and developing public health systems may be a first step in removing vaccination barriers for this disproportionately affected population. Lessons learned from the COVID-19 pandemic may also be used to develop strategies to reach people with disabilities during other public health emergencies.

Educating Policy Makers About Health Inequities Faced by People With Disabilities

Respondents reported that some government officials did not fully appreciate the health inequities faced by people with disabilities. They emphasized the need to have disability representatives woven into the COVID-19 response so they can educate and advocate for the unique needs of the entire spectrum of people with disabilities, including those who may not be easily identified. They also emphasized the need to incorporate disability representatives in the public health infrastructure, including other emergency preparedness planning efforts. For instance, Tennessee has a disability appointee on the state unified command staff, and Minnesota has a representative from the state council on disability serve as a policy advisor to the State Emergency Operations Center. These representatives helped advocate for prioritization of people with disabilities in the first few phases of state vaccination plans.

Accessing Data on People With Disabilities to Inform Vaccine Prioritization Guidance

Only a few studies explored the relationship between disability status and severe illness caused by COVID-19,^4-7 and one study found that people with Down syndrome were up to 10 times as likely to die from COVID-19 than people without Down syndrome. ⁴ Nonetheless, the sparse amount of data on people with disabilities precluded them from being considered in some vaccine prioritization discussions. Respondents noted an urgent need to collect data on disability status as a demographic variable in data collection systems and for jurisdictional consideration of people with disabilities in vaccination plans until such data become more widely available. To address this concern, Pennsylvania tracked the rates of COVID-19 illness, hospitalization, and death among people with disabilities at the state level starting in March 2020. These data were influential in prioritizing people with disabilities and, if applicable, their paid and unpaid caregivers in the first few phases of the state vaccination plan. The District of Columbia described its vaccination plan as a living document that could change based on vaccine supply, new research, and feedback from partners.

Vaccinating Paid and Unpaid People Who Care for People With Disabilities

Respondents emphasized the importance of prioritizing caregivers in vaccination plans to protect themselves and the people for whom they provide care. Results from a nationally representative online survey found that about 21% of adults in the United States have provided care to another adult or child with special needs at some time in the past 12 months. ⁸ This percentage is equal to an estimated 53 million adults in the United States who provide care. Nearly 1 in 5 (19%) of those caregivers is providing unpaid care to an adult with health or functional needs. ⁸ States such as Minnesota and North Carolina revised their state vaccination plan to include caregivers in the first few phases of vaccine prioritization. The Georgia Department of Public Health and its partners hosted vaccination clinics for people with disabilities and their caregivers. The University of Alabama–Birmingham expanded its “House Calls” program to provide in-home vaccination to enrolled patients who are unable to travel to vaccination appointments and their eligible caregivers.

Educating People and Health Care Providers About Disability Prioritization in State Vaccination Plans

Jurisdictional vaccination plans were posted on public health department websites. Information on disability prioritization within jurisdictions was available on the Johns Hopkins University website. ⁹ Even with these communication outlets, some respondents reported that people with disabilities and their vaccination providers did not know how their jurisdiction defined disability or prioritized people with disabilities in their community vaccination plan. The governor of Arkansas used social media to educate people about the state vaccination plan: information about vaccine eligibility for people with disabilities was posted onto YouTube, and the Arkansas Department of Human Services reposted these videos on an active Facebook page for people with disabilities and their advocates. The Pennsylvania Department of Human Services developed a letter for unpaid caregivers of people with disabilities that explained its prioritization in the state vaccination plan; it could be downloaded from its website. Similarly, the Tennessee Developmental Disabilities Council developed plain-language materials, downloadable from its website, that explained where people with disabilities and their caregivers were listed in the state vaccination plan. Most communication channels used to educate people about state vaccination plans required access to the internet, although people with disabilities are less likely to have broadband internet access or use the internet than people without disabilities. ¹⁰

Addressing Vaccine Hesitancy and Increasing Uptake Among Direct Service Providers

Respondents reported that many direct service providers (DSPs) who care for people with disabilities are hesitant to receive a COVID-19 vaccine. They also reported that Black and Hispanic DSPs are more hesitant to receive a COVID-19 vaccine than White DSPs. These accounts align with a survey that found 30% of health care workers were hesitant to receive a COVID-19 vaccine; of those, Black health care workers were more hesitant than White health care workers. ¹¹ The Kentucky Department of Health and North Carolina Division of Mental Health Developmental Disabilities and Substance Abuse Services worked with trusted members of the community, including faith leaders, to educate people in the community about the safety and efficacy of COVID-19 vaccines. The Louisiana Office of Citizens With Developmental Disabilities conducted interviews with administrative leaders of residential facilities to learn more about successful strategies to vaccinate DSPs. Some successful strategies were holding town halls, hosting speakers, offering incentives, writing personal letters to staff members, and communicating when leaders received a COVID-19 vaccine themselves. Some residential facilities in Missouri found that offering DSPs multiple opportunities to be vaccinated increased vaccine uptake.

Scheduling People With Disabilities for COVID-19 Vaccination Appointments

Jurisdictional respondents reported that many vaccination appointment scheduling systems were web-based and involve multiple pages of information gathering. As previously noted, some people with disabilities may not have access to the internet, and some websites may be inaccessible to people with disabilities. As such, the Hawaii Developmental Disabilities Division leveraged case managers to help people with disabilities register for vaccination appointments. People with disabilities were notified of this service via letters and emails that provided a number to call for assistance. Other states registered anyone living in an intermediate care facility or group home for focused vaccination events (District of Columbia Department on Disability Services) or contacted anyone who received disabilities service waivers to schedule a vaccination appointment (Ohio Disability Health Program). Still others developed partnerships with pharmacies to schedule vaccination appointments for people receiving disability support services (Kentucky Department of Health).

Transporting People With Disabilities to COVID-19 Vaccination Sites

More than half of people with disabilities identified by the US Census Bureau who responded to a web-based survey from October 2015 through February 2017 reported that they sometimes (36%) or usually (27%) have problems with the availability of transportation to get where they need to go in the community. ¹² Respondents reported that even when a vaccination appointment is scheduled, transportation to the vaccination site is often another barrier to vaccination. The Colorado Office of Community Living worked with community-based organizations, Medicaid, ride-share companies, and the state Department of Transportation to offer free public transportation to vaccination appointments for people with disabilities. Other states provided mileage reimbursement to volunteers to transport people with disabilities to vaccination sites (Georgia Department of Public Health) or partnered with public nonemergency medical transportation services to provide people with disabilities accessible transportation to vaccination sites (Louisiana Office of Citizens With Developmental Disabilities).

Identifying People Who Cannot Independently Leave Their Home for COVID-19 Vaccination

The Centers for Medicare & Medicaid Services (CMS) defines people who are homebound, or unable to independently leave their home, as those who (1) because of illness or injury, need the aid of supportive devices; the use of special transportation; or the assistance of another person in order to leave their place of residence or (2) have a condition such that leaving his or her home is medically contraindicated. ¹³ If 1 of these 2 criteria is met, then the person must also demonstrate a consistent and taxing effort to leave the home. ¹⁴ Respondents noted that not everyone who meets these criteria is enrolled in CMS-administered programs, making it difficult to identify all people who cannot independently leave their home for vaccination. To address this challenge, the Louisiana Office of Citizens With Developmental Disabilities worked with Medicaid and local Area Agencies on Aging and Centers for Independent Living to identify people who cannot independently leave their home. Other states worked with community-based programs such as Meals on Wheels (Florida Agency for Persons With Disabilities) or senior centers and other volunteer organizations (Long Island Regional COVID-19 Health Equity Task Force) to identify people who cannot independently leave their home. Still others established a dedicated telephone line for people who met the state definition of homebound to call and schedule an appointment for in-home vaccination (Massachusetts Department of Public Health and Commonwealth Care Alliance).

Providing COVID-19 Vaccination to People Who Cannot Independently Leave Their Home

An estimated 6% of Medicare beneficiaries cannot independently leave their home. ¹⁴ This estimate includes 395 422 people who were completely home-based and 1 578 984 people who were mostly home-based in 2011, ¹⁴ but it does not include people who cannot independently leave their home and do not receive Medicare services. Jurisdictional respondents reported the need to develop plans to reach all these people for COVID-19 vaccination in their own home and at times that were convenient for them and their caregivers. The Indiana Department of Homeland Security implemented the “Homebound Hoosier” program, which sent emergency medical services units to provide in-home vaccination to people who cannot independently leave their home. The Colorado Office of Community Living partnered with a private company that provides care for older adults and people with disabilities to offer in-home vaccination. The Georgia Department of Public Health also implemented these strategies and contracted with local nursing staff to provide in-home vaccination.

Creating and Distributing Accessible Messages Regarding COVID-19 Vaccination

The Americans With Disabilities Act specifies that all state and local governments are required to ensure accessible communications for people with disabilities. ¹⁵ Accessible communications are both spoken and written and must be clear and understandable for all populations with a disability. Respondents reported that accessible communications were especially important for COVID-19 because the pandemic involved a complex and evolving vaccination environment. The Michigan Department of Civil Rights developed more than 20 American Sign Language videos on COVID-19 vaccines. The Pennsylvania Office of Developmental Programs worked with a contractor to develop social stories that provided a visual explanation of what to expect when getting a COVID-19 vaccine and what to expect after getting a COVID-19 vaccine. The Tennessee Council on Developmental Disabilities developed a resource entitled “COVID-19 Vaccines: A Plain Language Guide.” ¹⁶ This resource was written at a fifth-grade reading level and covered general information about COVID-19, specific information about COVID-19 vaccines, possible side effects from vaccination, and continued mitigation efforts after vaccination.

Public Health Implications

People with disabilities and their caregivers face health and social inequities that may prevent them from receiving equitable and timely COVID-19 vaccination. Jurisdictional respondents reported several ways to address these challenges that leverage existing systems for vaccination efforts. Some of these systems are aging/disability service agencies, case managers, community-based programs, departments of transportation, emergency medical services, Medicaid/Medicare, pharmacies, residential facilities, social media outlets, and university programs. Still, respondents reported the need to enhance existing systems (eg, incorporating people with disabilities in the public health infrastructure, partnering with faith-based organizations and leaders, expanding accessible communications, including websites) and develop new systems to systematically collect data on disability status as a demographic variable. Sharing resources between states and other entities, such as strategies used to vaccinate people with disabilities and accessible communication materials, may also facilitate equitable vaccination. Advocates, educators, policy makers, and others can use this information to improve public health policy and practice and positively affect the lives of people with disabilities and their caregivers.