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How do the 80-year-olds who don’t have adult children do it? The scale and ambition of the COVID-19 vaccine – from its development to clinical research to deployment – has been an unprecedented challenge and, in many ways, an achievement. It’s also a trash fire for our parents, a development that is creating the newly assistant patient navigators of millions of Americans.
This is not a diatribe about the ineptitude of production or distribution. It’s a rant about communication and design. These are, wherever you live or whatever your community’s current immunization plan, are the myriad of ways that almost certainly doesn’t make sense to an older adult.
There is a saying that translates to “Nothing about us without us”. The concept is simple: not to do or do things for a population without the contribution of this population. So I have to ask: has anyone who set up one of the catastrophically unnecessary vaccine registration websites ever spoken to their grandmothers?
Vaccination for my mother, unlike anything related to her care, was simple. She is in a facility in New Jersey, the state with the highest nursing home death rate in the country. When the vaccine was approved, residents of Garden State long-term care facilities simply went to the front lines. My mom didn’t have to figure out how to register online or wait outside in the cold.
The story of my mother-in-law, on the other hand, has been a story of daily exasperation. It started with a terse email from her doctor, referring her to the New York State vaccination site. Here’s what happens when she goes. A message informs her that “The Am I eligible app is the fastest way to see if you are eligible and to make an appointment.”
Like around 60% of seniors, my mother-in-law does not have a smartphone. But she can, probably, complete the eligibility form and find out where to get an appointment. She can then attempt to make the unique available appointment open in her area today, and find out when she tries to confirm it is missing. Or she might try to book a five-hour drive, be sent to a page that says “Please select an event” and realize she has to scroll to the bottom of the page to access a live link.
Our state site informs her, “Once you have successfully scheduled an appointment, you will receive a confirmation email containing a barcode,” a system she certainly does not understand. If she’s like her neighbor couple in her suburb of Westchester, then she can go downtown to get to the vaccine distribution center and be refused because they’re exhausted, and start the whole process over again.
I know all of this because my mother-in-law didn’t do any of these things today. My partner did it, like he does every day. (The New York State vaccination site, at the time of writing, carries the message that it is “in need of repair.”) Her mother is 88 years old, debuts with dementia and arthritis that make standing and walking difficult. But on.
My mother-in-law, by the way, has plenty of privileges. She has a professional concierge who accompanies her every day of the week. She has a family that can do all of the heavy lifting thanks to a process conducted almost entirely through technology she is deeply uncomfortable with, technology riddled with bugs, glitches, errors and outdated information. and incorrect. She has a group of friends in similar circumstances, who call each other when a date, briefly, opens. It is a desperate and stressful situation. Now imagine adding another layer of obstacles to all of this, like the one my neighbors in upper Manhattan faced.
Earlier this month, the state opened the Fort Washington armory to New Yorkers over 65 “to combat these forces of inequality.” It’s in Washington Heights, a neighborhood where 69.5% of the population identifies as Hispanic and has a poverty rate of 18.4%. But as The City reported to the Armory earlier this week, “At the door, most of the people entering appeared to be white and did not know the neighborhood…. None of the few guides and security guards outside directing people spoke Spanish. After speaking to a dozen people who had come to be vaccinated, the publication found that ten of them were “commuters who are either retirees or work from home.” Only one, a 69-year-old Spanish-speaking man, said he lived in the neighborhood. (The Armory is now in the process of reserving the majority of appointments for local residents and adding Spanish-speaking staff.)
It is true that not all fields face such a difficult process. A colleague’s older aunts recently had a relatively smooth experience with scheduling appointments and getting vaccines. But there are a myriad of issues and frustrations in communities across the country, and a common theme is that seniors with internet skills and supportive intermediaries are greatly privileged. An Associated Press article earlier this month notes that “16.5% of American adults 65 and over do not have access to the Internet” and that “over 25% of blacks, about 21% of Hispanics and over 28% of Native Americans aged 65 and over have no way to connect. “
Even for the lucky ones, the process is daunting. On Thursday, Mindy Kaling posted a photo of her trip to Dodger Stadium with her dad and wrote, “We signed up for an online slot machine and wanted to keep her company in the car because we thought we might have to. -be waiting for hours. Lots of stress for older Americans about the vaccine. Will it be far from them? Will there be a toilet? Will they have to wait in the cold? Will the paperwork be confusing? And like most of us adult children of older Americans, their stress becomes our stress because we worry about our parents since we know how badly the elderly are treated, in general. “
The situation is also difficult because once a loved one manages to clear all the obstacles and get the vaccine, they must come back and receive the second dose. Which, at the best of times, may very well involve a daughter or son having to help them get to the site and get home. Someone who can also home teach his children right now, or who is unable to afford gasoline because he lost his job. Someone already in dire circumstances. And at every turn, everything seems harder than it needs to be.
My friend David, who works in the healthcare industry, recently sent me a screenshot of the registration form in his hometown of New Jersey. The questionnaire offers a long list of yes / no questions, most of which require a negative answer – “Do you have a fever? Have you received another COVID-19 vaccine?” The last one, however, requires a yes – “Will you be available for your second dose in 3/4 weeks?” It’s easy to see how someone might reflexively click in the same column on the row, as the form is literally designed to encourage them. And it’s easy to see how a person who is willing and qualified to receive the vaccine would unwittingly exclude themselves. It’s the kind of careless design that can really hurt, especially a vulnerable senior. It’s maddening.
David added: “There was a lot of ‘information’ built into the website. If you started typing your address, they would try to find it and figure out your full address for you. Because the website was so hammered, These picklist type items weren’t loading. It would just freeze on the page. ”He also asked the claimant’s insurer, but offered an incomplete list of possibilities.
It is heartwarming to see that many generous and motivated people across the country have come together to help our older Americans, like the California doctor who acquired 500 doses and set up a vaccination post at a college in Lafayette, or the Facebook groups that have emerged. to match seniors with volunteers willing to help them organize their meetings. And there is hope every day that we learn from the mistakes made in the frenzy of trying to undo a disaster few of us could have understood just a year ago.
In the meantime, however, David says, “I think all we can do is hold hands. I took care to register personally, I have already made two or three neighbors, and I have a few more in mind for the next time a vaccine becomes available. “We love our parents, grandparents, neighbors and friends, and we want them to be well. We therefore take on the challenge of getting them vaccinated. So we continue to hold their hands. We continue to fill out confusing forms and smash government websites that clearly weren’t created with their habits or limitations in mind, as if they had no say in the history of ‘a crisis that has so far killed 291,000 Americans over 65. and climbing. And we continue to hope that they will not be counted among them.
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