Introduction

On April 27, 2021, The Partnership for Inclusive Disaster Strategies circulated a survey asking about vaccine equity and access for disabled people in the United States.

The survey had three (3) goals:

1. To learn about the barriers disabled people across the United States encounter in the COVID-19 vaccination process; 
2. To hear about the individual and organizational initiatives to expand disability access to vaccines;
3. To learn about the support these initiatives need to develop or expand.

 

Thank you to all individuals and organizations that submitted responses and helped us circulate the survey.

Your experiences, both personal and professional, are valuable in understanding how the pandemic and vaccine distribution are playing out for people with disabilities. 

These responses show that while some individuals and communities report accessibility and inclusive disaster planning successes, the great majority of people with disabilities are encountering a large range of barriers during vaccine distribution. 

 

Responses

271 people responded to our survey.

82% of respondents self-identified as disabled.

• They included both individual advocates and staff members of organizations
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• Respondents represented both urban and rural communities in the United States. They wrote in from the North East, Mid Atlantic, Mid West, North West, Hawaii, the South and the South West, Central and West Coast
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• Organizations represented included: Centers for Independent Living (CILs), State Independent Living Councils (SILCs), State Departments of Health, support groups for people with marginalized identities

 

Slightly more than a quarter of respondents (27.7%) self-identified as non-white.

4.7% of respondents chose not to disclose their race/ethnicity.

Of the 27.7%:

• Around 10.7% of respondents identified as Black or African American, Black and Indigenous or biracial with a Black identity.
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• Around 4% of respondents identified as Asian, Asian American, or biracial with an Asian identity.
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• Around 4.4% of respondents identified as Hispanic or Latino, or biracial with Hispanic/Latino identity. 

Given that the vast majority of respondents identified as White or Caucasian, it is clear that Black, Brown, Indigenous, and other people of color are under-represented in this survey result. The Partnership is committed to including and amplifying non-white communities in all our efforts and response. We aim to do so by continuing to reach out to leaders in these under-represented communities.

 

A little over half of the respondents (52.3%) said that they/their organizations are involved in accessible vaccine distribution to people with disabilities.

• Some respondents said their organizations, including several CILs, hosted clinics to provide vaccines
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• Many respondents reported connecting people to resources, such as accessible transportation, that can facilitate vaccines
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• Some respondents reported directly assisting people with disabilities register for the vaccine
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• Some respondents reported strong partnerships with city and state officials and assisted in identifying, messaging, and outreach to marginalized communities
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• Some organizations conduct accessibility reviews of sites, policies, practices
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• Some reported engaging with regional COVID-Response initiatives, collaborating with other community groups, organizations, churches, and public agencies
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• A few organizations coordinated at-home vaccinations

 

Those who did not report involvement in accessible vaccine distribution cited the following reasons: 

• Individuals reporting they are stretched thin­
   
• Organizations reporting insufficient staff and capacity
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• Some organizations reported experiencing barriers and exclusion from local public health departments because they (the organization) are not medical providers
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• One organization reported that their building prohibited them from becoming a vaccine site

 

Barriers to Disability Access of the
COVID-19 Vaccine

The responses make clear that vaccine distribution is inconsistent in the United States. Vaccine accessibility for people with disabilities varies state-by-state, and even by county or cities. Some respondents reported few difficulties, working closely with state partners and distributors to ensure accessible locations. However, the majority of respondents cited barriers and a desire for officials to work more closely with disability advocates to identify and close the gaps in vaccine distribution.

 

4 Most-Reported Barriers to Disability Access to Vaccines:

• Lack of transportation / accessible transportation
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• Lack of digital access (internet/computer access)
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• Lack of accessible information (American Sign Language interpreters, inaccessible website/telephone registrations)
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• Inaccessible physical vaccine sites and a lack of home-visit vaccinations

 

Additional reported barriers to accessing the COVID-19 vaccine included: 

• Inaccessible communications regarding COVID-19 and the vaccines
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• A general lack of information and inconsistent messaging on COVID-19 and vaccines
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• Fear/distrust towards public health
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• Lack of funding for Personal Assistance Services and Direct Support Professional
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• Lack of support in managing functional support due to post-vaccine side effects
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• People with disabilities, especially those living in the community, were not prioritized
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• Complicated registration processes
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• Barriers to foreign language speakers
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• Inaccessible parking at the vaccine site
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• Long lines and no resting places at vaccine sites
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• Unresponsive public health agencies
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• Distance to travel to the vaccine sites
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• Little support at workplaces to take the time for vaccination
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• Not notifying people with disabilities of their rights to accommodations
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• Not alerting people of their rights/grievance process
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• Lack of Americans with Disabilities Act (ADA) policies

 

Some disabled respondents wrote about the barriers they personally faced in obtaining vaccines: 

“My medical provider knew I'm deaf – didn't get full communication access. It seems the medical provider didn't get CDC Accessibility Checklist they're responsible.”

• Washington, DC

“There is plenty of availability but no way for me to get to the vaccine locations and no info about house visits.”

• Missoula, MT

“It felt overwhelming at first trying to make an appointment. I thought I could just go to my pharmacy and get my shot. I was told to go to the companies website. Then I couldn't figure out how to navigate the website to sign up.”

• Springfield, IL

 

“What would help organizations get involved in or expand your Accessible Vaccine Distribution operations?”

 Respondents answered:

• Accessible transportation options
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• Increased and clearer communications to the public
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• Funding for the vaccine sites
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• Resources for outreach
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• Easier vaccine registration process
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• Additional vaccine availability for people in rural areas
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• Support for initiatives to bring vaccines to people’s homes and care facilities, such as nursing institutions
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• Capacity/more staff
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• Inclusive Disaster Planning: establishing, increasing, or continuing partnerships with local/state emergency management and departments of health
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• Training for CILs/organizations on how to partner with other organizations in the distribution process
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• Training for-profit organizations, such as pharmacies, that have vaccine sites
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• Resources for outreach
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• Mobile clinics
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• Better language accessibility for scheduling and at vaccine sites
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• Close relationships with the media

 

Less than a fifth (19.9%) of respondents knew that FEMA could reimburse States for Personal Assistant Services in non-congregate settings

During the pandemic, COVID-19 has run rampant in institutions where people reside together closely, such as homeless shelters, group homes, and nursing facilities. It is vital for public health officials, states, counties, and disability organizations to know that FEMA can reimburse for personal assistance services in non-congregate shelters. This can prevent institutionalization and help relocate disabled people out of institutions. Knowing how to access resources that can keep disabled people out of institutions will save lives.

In addition to the barriers previously discussed, many also provided feedback on the consequences of a cultural resistance against vaccines - and how this would impact people with disabilities.

• “[I] worry about care providers not taking the vaccine but still entering our homes." - Indianapolis, IN
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• “The biggest obstacle has been the fears of others. All of our staff have gotten vaccinated so that we can share our experiences with consumers. The biggest impact has been that one of our staff almost died from contracting COVID-19 late last year – just before vaccines were available. She has been able to let consumers who are hesitant know how bad the virus was, and how it has destroyed those in the indigenous communities.” - Fresno, CA
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• “We are working on educating all the community in the worthiness of getting the vaccine." - Lubbock, TX

 

There is a critical need for the state, county, and city public planning to include the disability community in vaccine distribution and other disaster planning:

• “We are a center for independent living and one of the organizations in many communities that serve people with all types of disabilities and ages. I feel that there should have been a federal directive or communications to health departments that there be some type of coordination with centers to reach and serve our population.” - Rock Island, IL

• “Let's start the planning now for future pandemics or other major incidents. HealthCare systems are the worst for people with disabilities. There really is not equal access, just veiled attempts to address it.” - Reno, NV 

• “Together, the advocates for people who have disabilities or Access and Functional Needs (AFN), and the people themselves have to be loud and clear that inequality in life-sustaining efforts will not be tolerated!” - Lakewood, OR

 

Summary

We sent out a call for feedback on accessing the COVID-19 vaccine, local disability-led organization’s involvement in vaccine distribution, and barriers people with disabilities face to access the vaccine. Over 250 people responded. They reported the many barriers disabled people face during the vaccination process and shared their personal experiences.

This report demonstrates that many people with disabilities are an afterthought and continue to be left behind in the vaccine distribution process. This is after studies that report many disabled people and people with access and functional needs face a higher risk of contracting, being hospitalized, and dying from COVID-19.

The lack of responses from non-white communities, despite COVID-19 disproportionately impacting these communities, also suggests that there is very little accessible information getting through to these communities.

Local public health departments and emergency management agencies need to work collaboratively with disability-led and other community-based organizations to create life-saving policies that prioritize disabled people and people with access and functional needs during the COVID-19 pandemic and concurrent disasters. In working collaboratively with community-based organizations, public health departments and emergency management agencies should aim to support disability-led programs with adequate funding resources. This collaboration will lead to an equitable and inclusive vaccine distribution process, and our communities would no longer be left behind.