The evolving Covid-19 Coronavirus Pandemic has brought about a full range of challenges, disruptions and personal crises for many in our daily lives. In June, in a blog entry entitled, "Destroy the Virus, Mitigate the Fear", I shared my thoughts about the effects that the Pandemic was having on my life and others with ONH and other forms of Blindness and visual impairment. This is a follow up post on my experiences and those of many other Blind people as they navigate the process of obtaining a vaccine. My own experience is representative of the challenges many Blind people have faced in working with health care providers and county and state health departments during the course of the Pandemic.
I believe we all have a responsibility to--if not destroy the virus outright--to mitigate it. This means wearing a mask at all times when out in public or when in close contact with those outside your social bubble or household, maintaining adequate social distancing, and most importantly, getting the vaccine as soon as possible. the latter especially can be a real journey for people with many disabilities--including Blindness.
Barriers like inaccessible web sites, limited supply, and difficulties with transportation to and navigating within a distribution site make obtaining a vaccine an epic adventure requiring ingenuity, flexibility, and, at times, sheer willpower. Fortunately, most of my friends and colleagues in the Blind and sighted community--as well as my family--have obtained at least one dose of a vaccine as of this writing and emerged from the process relatively unscathed, aside from some minor symptoms after being administered the shot.
My journey began in late June 2020, soon after I published my earlier blog post on Covid-19. Our area was experiencing a significant surge in cases, and my mother and I decided that we needed to be tested, though neither of us were experiencing symptoms. When I visited the web sites for our county and state health departments to determine where testing was available, I found that this information was presented in a format that was inaccessible to users of the screen reading software that I use. Both sites appeared to use the same information source, which presented testing locations as a map of our county with testing sites depicted as dots. A sighted user could hover over a dot with a mouse and obtain specific information on the testing site and a link to the provider's web site, where they could contact the provider directly or schedule an appointment online to be tested.
I ultimately had to obtain sighted assistance from a specialized, remote support service for people who are blind or have other disabilities called AIRA, where a sighted agent working remotely helped me identify a testing center about two miles from my home.
I reported the issue to our local county health department and was ultimately connected to a public information officer, who was able to rectify some of the accessibility issues. He also conducted a brief guest presentation to my local Chapter of the National Federation of the Blind.
In April 2020, at the outset of the Pandemic, I signed up to participate in a Covid-19 clinical vaccine trial. However, after discussions with a recruiter, I was informed that the clinical investigators at my research site had concerns about a Blind person taking part in this study. I later found out that they had inadvertently recruited me after the vaccination provider changed their selection criteria, which would have excluded me from participating in the trial regardless of my Blindness.
I ultimately filed a complaint with the U.S. Department of Health and Human Services, Office of Civil Rights for discrimination based on my experiences, and in late September, the National Federation of the Blind signed on to my complaint. I am happy to say that I was able to connect with the hospital performing the clinical trials, and we are working amicably toward a resolution to my complaint as of this writing.
In November, I published an account of my attempt to participate in the clinical trial on the blog of the National Federation of the Blind. Long months of anticipation followed. My attention to watching our local media reports and the governor's daily press briefing on the availability of the vaccines and the eligibility criteria to receive it neared an obsession as I constantly worried that one of my parents or I would contract the virus. Like many, I longed for the day when I could go to a restaurant or just leave our surrounding neighborhoods without the constant fear of getting sick, as my alarm over the huge spike in cases during the Fall and early Winter grew.
Finally, in December, the U.S. Food and Drug Administration issued emergency use authorization to begin administering the vaccines produced by Pfizer and Moderna. The first person in our household to receive a vaccine dose was my father, who received his through the Veteran's Administration in February. My mother and I would receive the vaccine in March and April, but scheduling appointments to receive the shot for the both of us required persistence, resourcefulness and a fair amount of tech savvy.
Like most of the United States, Ohio, where I operate, distributes its Covid-19 vaccine supplies through a patchwork quilt of public agencies, community organizations and public and private health care providers operating from myriad locations: from mass vaccination sites to clinics at local grocery stores, hospitals and clinics, and mobile distribution sites at the offices of non-profit organizations, churches and community centers. Each provider has its own process for applying to take the vaccine and schedule an appointment. The accessibility of these applications for people who are Blind varies widely. My mother expressed that she did not want to travel far for a vaccine or go to a mass vaccination site--as she is in relatively good health, and my father, who has COPD and other health conditions, had already received both vaccine doses by this point.
I found the process of scheduling appointments for my mother and I to be a tedious, time consuming ordeal. After downloading the app that our county health department uses to schedule appointments and spending nearly an hour filling out my basic contact and demographic information, I ran into accessibility issues, had to abandon the application, and ultimately had to track down the same online form on a web site on my PC with a web browser. After completing this application--again with the assistance of an agent from AIRA--, the only result my search yielded was a mass vaccination site operated by our county health department that had no appointments available for several days.
Undaunted, I called and visited the web sites of several health care providers and local clinics and pharmacies near my home and offices purporting to offer the vaccine. After a few hours of searching, I landed an appointment for the next week at a local pharmacy in my neighborhood. However, I needed support from an AIRA agent to select my appointment time and fill out the application due to accessibility issues with my screen reader and the security protocols the provider's web site was using. I tried to schedule an appointment for my mother at the same pharmacy, but all appointments at that location had been booked for more than a week. The same was true for all but one location operated by the same provider, and that was more than half an hour away. I ultimately found my mother an appointment through her primary care provider, and I am happy to say that she is scheduled to receive her second dose of the Pfizer vaccine later this week.
The difficulties I faced in obtaining the vaccine (and helping my family do the same) are not unique. The National Federation of the Blind, the leading consumer organization serving the rights of the Blind in the United States, is currently conducting a survey of the various barriers Blind people face to obtaining a Covid-19 vaccine.
According to an article published in February by Kaiser Health News, many vaccination web sites operated by federal, state and local government agencies are inaccessible to users of access technologies for Blind users in violation of federal civil rights laws, according to an investigation by Kaiser Health News and https://webaim.org/Webaim, a non-profit organization providing web accessibility solutions based at Utah State University.
This investigation of 94 web sites in all 50 states and the District of Columbia provided to Webaim by Kaiser Health News, which was conducted on January 27, found that nearly all the web sites had accessibility issues. In at least seven states, Blind residents reported inability to register for a vaccine without assistance. Alternatives, such as telephone services operated by community organizations and state and local health departments, were often unavailable and involved long hold times. Even the Centers for Vaccine Management Administration of the U.S. Center for Disease Control and Prevention, which a small number of counties and states opted to use, was inaccessible to Blind users.
A number of organizations and assistive technology providers serving the Blind community currently offer ad hoc solutions to accessibility barriers to obtaining the vaccine, but these have drawbacks. AIRA, which provides information on a person's environment through live agents operating remotely, currently offers 30 minutes of free service to help blind users obtain the vaccine. This includes assistance to navigate an inaccessible web site as well as information needed to travel to a vaccination site. For example, I needed to use an Aira agent to navigate our local pharmacy's application form because of an issue that occurred with the site's security features.
Though Aira is an invaluable service to many in the Blind community, the service requires a smart phone and the ability to download its app, technology and skills that not everyone in the Blind community possesses. Though Aira offers its services free through a number of promotional offers and works with free access partners to enable Blind users to use its services at various community locations, such as chain stores, airports and museums, its services are expensive; its least expensive plan offers 30 minutes of services with a live agent for $29 per month in the United States and Canada. Even this is beyond the budgets of many potential users who are unemployed or live on a fixed income from government benefits such as Supplemental Security Income in the United States. AIRA is also generally not covered by insurance programs. Like many pieces of assistive technology vital to employment and daily living, users typically have to pay for the service out-of-pocket.
Organizations such as the National Federation of the Blind offer ride share codes for those to travel to a vaccination site. However, this program only covers transportation to the site--not the return trip. This option is also subject to driver availability, and a colleague of mine living in an urban area recently reported waiting more than two hours and having to pay premium rates for a ride. Some chapters and affiliates of the National Federation of the Blind and other community organizations offer programs and resources to help members receive the vaccine, including transportation and referrals to specific providers.
In Cincinnati, Ohio, where I operate, our local mass transit agency offered free transportation to a mass vaccination site on a weekend in March as well as shuttle service to the site from several nearby locations. This service was funded by the Community Immunity Initiative of the Ohio Department of Transportation, which sponsored several similar programs throughout the state. The main drawback of this option for a Blind person is that the service only involves one site, though our mass transit provider also offered free transportation throughout our system on other occasions. A person must schedule an appointment in advance at the site through one of our local pharmacies, which provides the vaccine. Because the site is located on a historic college campus with many architectural features, some prior knowledge of the environment is helpful--if not vital--to navigate to the site.
Finally, councils on aging and other community organizations offer transportation and mobile vaccination sites to specific minority populations at risk for contracting covid-19, such as those over 65 and members of racial and ethnic minorities. This is the best option for obtaining the vaccine for many who are Blind or have other disabilities.
For members of the Blind Community--and most others--finding a vaccination site is a challenge. However, this challenge is not insurmountable. As of this writing, Covid-19 vaccines are becoming increasingly available as demand lessens, and many options for a Blind person to travel to a provider exist. However, barriers such as the lack of web site accessibility persist. I believe it is incumbent on all of us to not only receive the vaccine, but also ensure that the vaccination is available to others--through transportation, usable technology, and effective community distribution. It is through these efforts that--ultimately--we can work to destroy the virus and allow all of us to return to a normal life.
ONH Consulting, LLC