How do 80-year-olds who don’t have adult children do this? The scale and ambition of the COVID-19 vaccine – from its development to its clinical research and implementation – has been an unprecedented challenge and, in many ways, an achievement. It is also a real trash fire for our parents, a development that is creating newly delegated patient browsers for millions of Americans.
This is not a rant about the ineptitude of production or distribution. This is a rant about communication and design. It’s about, wherever you live or whatever your community’s current vaccine plan is, the variety of ways in which it almost certainly doesn’t make any sense to an elderly person.
There is a saying that translates to “Nothing about us without us.” The concept is simple: don’t do or do things for a population without that population’s contribution. So, I have to ask, did anyone who created any of the catastrophically useless vaccine registration sites out there talk to their grandmothers?
My mother’s vaccination, unlike anything else about her care, was straightforward. She is hospitalized in New Jersey, the state with the highest death rate in nursing homes in the country. When the vaccine was approved, long-term care residents at Garden State simply went to the front of the line. My mom didn’t have to figure out how to apply online or wait outside in the cold.
My mother-in-law’s story, by contrast, has been one of daily exasperation. It all started with a concise email from her doctor, sending her to the New York state vaccine website. Here’s what happens when she goes there. A message informs her that “The Am I Qualified app is the fastest way to see if you are qualified and make an appointment.”
Like about 60% of the elderly, my mother-in-law doesn’t have a smartphone. But she can, presumably, fill out the eligibility requirement form and find out where to get an interview. She can then try to open the only appointment available in her area today and find, when trying to confirm, that he has disappeared. Or she can try to book one to five hours away by car, be sent to a page that says “Select an event” and realize that you need to scroll to the bottom of the page to reach a call.
Our state’s website informs her: “As soon as you successfully schedule an appointment, you will receive a confirmation email containing a barcode,” a system she definitely doesn’t understand. If she is like her neighboring couple in her Westchester suburb, she can go downtown to the vaccine distribution facility and be rejected because they ran out, and start the whole process over again.
I know all of this because my mother-in-law didn’t really do any of those things today. My wife did this, as he does every day. (The New York State vaccine website, at the time of writing, carries a message that it is “on maintenance”.) Her mother is 88 years old, has dementia and arthritis that makes it difficult to stay walk and walk. Of course.
My mother-in-law, by the way, has many privileges. She has a professional janitor who is with her every day of the week. She has a family that can do all the heavy lifting of dragging herself through a process conducted almost entirely through technology that she feels deeply uncomfortable with, one that is full of bugs, flaws, errors and outdated and incorrect information. She has a group of friends in similar circumstances, who bond when a meeting comes up, for a brief period. It is a desperate and stressful situation. Now imagine adding another layer of obstacles to all of this, like the one my neighbors in Manhattan are facing.
Earlier this month, the state opened the Fort Washington Armory to New Yorkers over 65 “to fight the forces of inequality”. It is in Washington Heights, a neighborhood where 69.5% of the population identifies themselves as Hispanic and has a poverty rate of 18.4%. But, as The City reported at the Armory earlier this week, “At the door, most of the people who came in appeared to be white and unfamiliar with the neighborhood … None of the few guides and security guards outside who directed people spoke Spanish. ” After speaking with a dozen people who came to get vaccines, the publication found that ten of them were “suburban people who are retired or work from home”. Only one, a 69-year-old man who speaks Spanish, said he lives in the neighborhood. (The Armory is now changing to reserve most appointments for local residents and add Spanish-speaking staff.)
It is true that not all areas are facing such a difficult process. A colleague’s elderly aunts recently had a relatively quiet experience making an appointment and getting the vaccine. But there are a myriad of problems and frustrations in communities across the country, and a common theme is that elderly people with Internet proficiency and support intermediaries are immensely privileged. An Associated Press story earlier this month notes that “16.5% of American adults aged 65 and over do not have access to the Internet” and that “more than 25% of blacks, about 21% of Hispanics and more 28% of Native Americans aged 65 and over cannot go online. “
Even for the fortunate, the process is daunting. On Thursday, Mindy Kaling posted a photo of his journey to Dodger Stadium with his father and wrote: “We signed up for an online slot machine and I wanted to keep him in the car together because we thought we might have to wait hours There is a lot of stress for older Americans about vaccination. Will it be too far away from them? Will there be restrooms? Will they have to wait in the cold? Will the paperwork be confusing? And like most of us, adult children of older Americans, stress of them becomes ours, because we are concerned about our parents, because we know how the elderly are mistreated, in general. “
The situation is even more worrying because, once a loved one manages to go through all the obstacles and get the vaccine, he needs to go back and receive the second dose. Which is, at best, very well it can involve a daughter or son having to help them get to the place and return home. Someone who may also be teaching their children at home now or cannot afford gasoline because they have lost their jobs. Someone already in extreme circumstances. And with each step, everything seems more difficult than it should be.
My friend David, who works in the healthcare industry, recently sent me a screenshot of the application form in his New Jersey city. 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 latter, however, requires a yes – “Will you be available for your second dose in 3/4 weeks?” It’s easy to see how someone could reflexively click on the same column along the line, because the form is literally designed to encourage you. And it is easy to see how a person anxious about the vaccine and qualified to receive it would involuntarily exclude himself. This is the kind of reckless design that can really do harm, especially to a vulnerable elderly person. It’s infuriating.
David added, “There was a lot of ‘intelligence’ built into the site. If you started typing your address, they would try to search for it and find the full address for you. Since the site was being mistreated, those sort of checklists that things were not loading. It would just be a kind of freeze on the page. “He also requested the applicant’s insurer, but offered an incomplete list of possibilities.
It is encouraging that many generous and motivated individuals across the country have helped our older Americans, such as the California doctor who purchased 500 doses and set up a vaccination post at a Lafayette high school, or the Facebook groups that have emerged to match the elderly with volunteers willing to help them make their commitments. And every day we hope to be learning from the mistakes made in the frenzy of trying to fix a disaster that few of us would have understood just a year ago.
In the meantime, however, David says that “I think the most that any of us can do is hold the hand. I took care of the registration personally, I already made two or three neighbors and I have a few more in mind for the next time there is a vaccine available. “We love our parents, grandparents, neighbors and friends and we want them to be well. Therefore, we take on the challenge of vaccinating them. Therefore, we continue to hold your hands. We continue to fill in confusing forms and block government sites that clearly were not created with their habits or limitations in mind, as if they had no words in the history of a crisis that has so far killed 291,000 Americans over 65 and escalated. And we continue to hope in some way that they will not be included among them.