How do 80-year-olds who do not have adult children? The scope and ambition of the COVID-19 vaccine – from its development to clinical research to its rollout – has been an unprecedented challenge and in many ways an achievement. It is also a real garbage dump for our parents, a development that newly created patient navigators of millions of Americans create.
It is not about the inability of production or distribution. It’s a rush about communication and design. It goes here, wherever you live, or the current vaccination plan that your community has, the multitude of ways in which it is almost certainly not an old sentence.
There is a saying that translates into “Nothing about us without us.” The concept is simple: Do not make or do things for a population without the population providing input. So I have to ask, has anyone ever had one of the catastrophically useless vaccine subscription sites out there talk to their grandmothers?
My mother’s vaccination, unlike anything else about her care, was simple. She is in a facility in New Jersey, the state with the highest death rate in the nursing home in the country. When the vaccine was approved, long-term caregivers in Garden State went just ahead of the queue. My mom does not have to figure out how to log in online or wait outside in the cold.
My mother-in-law’s story, on the other hand, was a daily upheaval. It began with a brief email from her doctor to send her to the New York State vaccination site. This is what happens when she goes there. In a message, she is told that “the app I am eligible for is the fastest way to see if you are eligible and make an appointment.”
Like about 60% of seniors, my mother-in-law does not have a smartphone. But she can, presumably, fill out the required form and find out where you can get an appointment. Then she can try to open the single available appointment in her area today and discover when she is trying to confirm that it has disappeared. Or she could try booking a five-hour drive from here, heading to a page titled “Please select an event” and realizing she needs to scroll to the bottom of the page for a live link.
Our state website tells her, ‘Once you’ve successfully scheduled an appointment, you’ll receive a confirmation email with a barcode’, a system she certainly does not understand. If she’s like her neighbor couple in her suburb of Westchester, she can spread to the center of the vaccine and be turned away because they run out, and the whole process can start all over again.
I know all this because my mother-in-law actually did none of these things today. My spouse did like every day. (At the vaccination site in New York State, at the time of this writing, the message is that it is ‘off for maintenance.’) His mother, 88, had the onset of dementia and arthritis. complicate. But sure.
By the way, my mother-in-law has boatloads of privilege. She has a professional caretaker who is with her every weekday. She has a family that can do the whole beat of percussion through a process that is carried out almost entirely by means of a technology with which she is uncomfortable, one that is riddled with mistakes, errors, mistakes and outdated, incorrect information . She has a group of friends in similar circumstances, who call each other when a date briefly opens. This is a desperate, stressful situation. Now imagine adding another layer of obstacles to it all, like the one my neighbors experienced in upper Manhattan.
Earlier this month, the state opened the Fort Washington Armory for New Yorkers over the age of 65 to fight back against the forces of inequality. It is in Washington Heights, an area where 69.5% of the population identifies as Spanish, and has a poverty rate of 18.4%. But as The City reported earlier this week from the Armory: “Most of the people who entered were white and unfamiliar with the neighborhood…. None of the handful of guides and security guards who led people spoke Spanish.” After talking to a dozen people who would be vaccinated for vaccinations, the publication found that ten of them were ‘suburbs who are either retired or working from home’. Only one, a 69-year-old Spanish-speaking man, said he lives in the neighborhood. (The Armory is now booking a majority of local residents’ appointments, adding Spanish-speaking staff.)
It is true that not every area experiences a difficult process. Elderly aunts of a colleague recently had a relatively smooth experience with making appointments and obtaining vaccine. But there are myriad problems and frustrations in communities across the country, and a common theme is that elderly people with internet skills and supportive intermediaries are very privileged. An Associated Press article earlier this month noted that ’16, 5% of American adults 65 and older do not have access to the internet ‘and that’ more than 25% of black people, about 21% of Hispanics and more than 28% of Indians 65 and older have no way to get online. ‘
Even for the lucky ones, the process is daunting. Mindy Kaling posted a photo of her trip to Dodger Stadium with her dad on Thursday, writing: ‘We signed up online for a lock and I wanted to keep him in the car because we thought we would have to wait hours . There is a lot of tension for older Americans about vaccination. Will it be far from them? Will there be bathrooms? 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 because we know how bad the treatment of the elderly in general is. ‘
On top of that, the situation is fraught because once a loved one manages to jump through all the hoops and get the vaccine, they have to come back and get the second dose. It is at best possible for a daughter or son to help them get to the yard and get home. Someone who may now also be homeschooling their children or unable to pay for gasoline because they lost their jobs. Someone who is already in extreme circumstances. And around every turn, everything seems harder 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 provides a long list of yes / no questions, most of which have a negative answer – ‘Do you have a fever? Did you get another COVID-19 vaccine? ‘ However, the last one requires a yes – “Will you be available for your second dose within 3/4 weeks?” It’s easy to see how anyone can click reflexively in the same column at the bottom, because the shape is literally designed to encourage it. And it is easy to see how a person who is eager for the vaccine and qualifies to receive it would subconsciously exclude themselves. This is the kind of negligent design that can really do harm, especially to a vulnerable older person. This is furious.
David added: ‘There was a lot of’ intelligence ‘built into the site. If you started typing your address, they would try to look it up and find your full address for you. Because the site is so hammered, the select type has things that are not loaded. It would just freeze on the page just like that. “It also asked the applicant’s insurer, but offered an incomplete list of possibilities.
It is pleasing that many generous, motivated individuals across the country have volunteered to help our older Americans, such as the California doctor who purchased 500 doses and set up a vaccination station at Lafayette Elementary School, or the Facebook groups that emerge. match seniors with volunteers willing to help them set up their appointments. And there is every day the hope that we learn from mistakes made in the madness of solving a disaster that some of us could only comprehend a year ago.
Meanwhile, David says that ‘I think the most we can do is hold on. I registered personally, I have already done two or three neighbors and I have a few more in mind next time there is vaccine available. ‘We love our parents and grandparents and neighbors and friends, and wish them well. We therefore take on the challenging task of getting them vaccinated. So we continue to hold their hands. We continue to fill in confusing forms and fill in collapsing government websites that are clearly not created for the sake of their habits or restrictions, as if they have no say in the story of a crisis that has so far affected 291,000 Americans older than 65 killed. , and climb. And we somehow keep hoping that they will not count among them.