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Since schools and state services shut down in the second of week March – a full nine months ago – children with disabilities have been neglected and isolated. I’m an education writer, who specializes in disability issues, and a parent of a child with autism, so I hear horror stories every day during interviews and informal chats with friends.
Parents tell me that their kids with autism haven’t left their homes in months and have no contact with peers their age. Therapists in schools whisper that their students with physical disabilities have not had legs stretched or strengthened. Teachers confide that it’s super hard to keep children and teens with intellectual and attentional disabilities glued to a computer screen all day. The impact of this pandemic and the hiatus on education for this vulnerable population has been even worse than I predicted back in March.
As we make various calculations to determine who should get priority for the coronavirus vaccine, let’s put disabled kids, their families, their teachers, and therapists to the front of the line. Those kids need to be back in school and getting in-person state services as soon as possible. Right now, there is no special status for these children and their helpers on the vaccine list, despite their dire needs.
All children have suffered since schools have shutdown, for sure, though we don’t know the extent of learning loss. Based on the numbers of children who have not participated in remote education and lack the necessary technology at home to engage effectively in remote education, COVID learning loss will be real and significant. Schools will need to do major catch up to meet the needs of all students, when schools open properly. However, the suffering of special needs kids and their families are so intense that we must consider prioritizing this population.
In addition to extra academic support, schools provide special education students with vital speech, fine-motor, physical, behavioral therapy. Extensive research shows that intensive therapy reaps the most success when children are young, when their brains are plastic and most open to interventions. With nearly a year gap in these services, young children have already lost critical time when learning to walk, talk, and control autistic behaviors.
Here in New Jersey, Early Intervention, a state-run program, provides in-home therapy before school districts take over at age three. For most of the year, therapists used Zoom to verbally coach parents, some of whom do not speak English, to do the exercises that stretch out the limbs of toddlers with cerebral palsy and strengthen mouth muscles of children with nonverbal autism. Therapists tell me that it didn’t work. If COVID rates rise again, services will again go virtual.
Although a physical therapist is permitted to stretch out a muscle knot in my shoulder twice a week, a therapist hired by the state cannot help a two-year child with cerebral palsy learn to walk. For some reason, therapy for adults is considered an essential medical service, while therapy for a child is not. Clearly, we need to rethink what is “essential.”
At local soccer and baseball fields, various youth sports leagues practice and hold matches all weekend. There, kids get exercise and socialize, as do their parents on the sidelines. Kids with special needs do not have access to those opportunities. In towns where schools have remained remote all this fall, students with disabilities have had no contact with other children in months. My friends with kids on the autistic spectrum say their kids have regressed socially and are depressed.
The burden on parents of special needs children has been enormous. There is ample data showing that school closures have placed a huge burden on parents, particular mothers, to supervise remote education, forcing many women to leave the workforce. Teachers and therapists tell me that children with disabilities have even more need of a parent to help them concentrate on the computer screen and to listen to a therapist’s instructions about holding a pencil. Mothers can’t work, because they have become full time special education teachers and therapists.
Not only are many parents unable to work, but they also have no relief, no break in their caretaking responsibilities. Children with more extreme disabilities have overwhelming needs. Without months of schools, camps, and state programs, parents are at their breaking point.
Instead of becoming adjusted to the status quo, parents tell me that their kids are also at the limits of endurance. When the school bus for one friend’s son with autism didn’t show up last week, she jumped in the car to drive him. The boy treasures his two days of in-person education per week, but had a meltdown before she drove very far. This change in routine, after so many months of disruption, was too much for him. She turned the car around and took him home.
Our situation is better than most; my son’s needs are relatively mild, and my job is flexible, so I can absorb the extra work. But I, too, am very tired and worried. At the end of all this, how rusty will my son’s social skills be with so little in-person education? How much regression in his conversational skills has happened already? What will be the long term implications from a year’s loss of therapy and in-person education?
While the competition to be first on the list to get the vaccine is certain to become tense, let’s not do what we always do — put the disabled community to the end of the line. Instead, let’s put them first.
36 thoughts on “Vaccinate Kids With Disabilities ASAP”
And on top of all this we don’t even have a vaccination that is approved for children yet. . .
If there’s only one F-bomb it’s fine for age 13 and up.
bg said, “And on top of all this we don’t even have a vaccination that is approved for children yet. . .”
That is an important detail.
I believe Pfizer is approved for 16 and up, so that is something. I have a kid who is turning 16 in March, so I’ve been very interested in that.
This is a really interesting opinion piece by Zeynep Tufekci and Dr. Michael Mina, a Harvard epidemiologist:
They are floating the idea of a one-dose regimen, particularly for younger populations, with a second dose to come when supply increases. (We’re supposed to be swimming in vaccine by June.)
“For both vaccines, the sharp drop in disease in the vaccinated group started about 10 to 14 days after the first dose, before receiving the second. Moderna reported the initial dose to be 92.1 percent efficacious in preventing Covid-19 starting two weeks after the initial shot, when the immune system effects from the vaccine kick in, before the second injection on the 28th day.”
Some months ago, they were talking about approving any vaccine that was 50% or more effective.
We can potentially vaccinate a lot more people faster than we believed.
Medical bureaucracies tend to operate on the two principles of making the best the enemy of the good and rationing by queueing, so the option of giving people not quite as good care but twice as fast is unlikely to be adopted.
y81 said, “Medical bureaucracies tend to operate on the two principles of making the best the enemy of the good and rationing by queueing, so the option of giving people not quite as good care but twice as fast is unlikely to be adopted.”
I’m afraid you’re right.
We’re really going to need that 9/11 commission for COVID in the US once this is over, but I think I want it to be run by Taiwanese, Japanese and South Korean public health officials.
I too noticed this analysis when i saw the graph. But it is a hot take that would require some trials designed to answer the question and not just a pretty graph.
The article points out, for example, that older people, who are most susceptible might be more likely to need the double dose. The dramatic graph might be an average that doesn’t show the variability.
(there’s an incipient hypothesis that older people have a slow and smaller immune response, a possible root of their susceptibility).
There’s also the good news about overfill:
“Using every drop from overfilled vials could boost available doses by up to 40 percent.”
The Hanukkah miracle!
I respect your speaking up for a voice that is less likely to get heard.
That said, the Pfizer vaccine is approved only for those 16 and up and the [hopefully soon] Moderna for 18 and up. Moderna did not request authorization for anyone younger. Pfizer is supposed to be starting trials in “adolescents”. So children aren’t going to be vaccinated in the first batches of people. I think people are hopeful that vaccines for children [school age? adolescents?] might be available in late summer 2021.
I believe in Washington State, the next phase, after health care workers & nursing home residents is those with significant health risks, and I would imagine (though I’m not certain) that would include 16-17 year olds with significant health risks. I don’t know how young people who require services (but are not necessarily medically at risk for Covid) would be placed (well, and I think it hasn’t yet been determined).
So, advocacy to your state is probably the step to take to make this voice gets taken into account.
I’ve been hearing about the roll out of the vaccine here in WA by physicians who are scheduling their vaccine dates. They are getting their vaccines, but the roll out is different at different organizations that have been given batches of vaccines. One HMO received a pallet (900+ vaccines) but wanted to make sure they had health care coverage as they rolled out the vaccine (which might cause short term side effects that require leave), so they were slower. One physician (an oncologist) was scheduled for a vaccine at the hospital where she does rounds (but not by her employer, where she was lower priority). So, individual employers and institutions were deploying the vaccine in their facility as they saw as most relevant.
From the perspective of opening schools. Would it be ‘sufficient’ for teachers to be vaccinated?
I agree with bj – it seems highly unlikely that children will be vaccinated in the first half of 2021 (though it may vary a bit for teens).
I think that doctors are going to be extra cautious about vaccinating even teens with potentially risky co-morbidities (many of them are scarred by the autism vaccine link backlash) – without clinical trials on children in general.
So, if teachers are vaccinated, and any high-risk adults (e.g. grandparents) in the children’s families. This may reduce the Covid risk enough to open schools without vaccinating the kids.
It all comes down to the powerful teacher unions. What are they calling for? Full vaccination of everyone in order to open schools? Or vaccination of teachers?
Ann said, “From the perspective of opening schools. Would it be ‘sufficient’ for teachers to be vaccinated?”
I believe a lot of teachers have concerns about older relatives that they live with or see regularly.
I would be happy if a good effort were made to keep the concierge medicine set at bay. https://nypost.com/2020/12/18/wealthy-californians-offering-thousands-to-jump-covid-vaccine-line/
Please? It is not fair for the people with the means to avoid personal contact with anyone (and look smashing while doing it) to jump the line in front of people at much higher risk. The concierge doctors should be ashamed of themselves.
How about this? Administer the shots to essential workers first, by inverse income. That is, the highly paid managers go last, while the people who have close personal contact with people sick with Covid (and/or their waste products) go first.
There was an uproar at Stanford when their algorithm for vaccinations left out the residents and fellows who are doing front-line work while prioritizing some doctors who do not see patients (or don’t see them regularly). I believe the explanation — that it was an error in software, but the optics are very bad. They discovered the error and then didn’t fix it until there was a raucous demonstration.
I really hope that my sister will be early in line. She has Down syndrome, the #1 highest-risk group. We’ve been in extreme lockdown for months, but it’s still scary. I hope that people with Down syndrome and other high-risk disabilities will get early access. It could save so many lives.
Tyler Cowen has posted on this question: https://marginalrevolution.com/marginalrevolution/2020/12/down-syndrome-and-covid.html
my guess is that reactions to this will be ugly
I’m really glad to see people talking about it. I hope people will recognize the importance of prioritizing high-risk people along with healthcare workers. It’s the logical and compassionate choice. My parents have been talking with our family doctor to make sure that my sister will be getting the first batch available.
thanks for that link, Dave
That is an adorable picture of Ian.
Right now I am glad I didn’t go into medical ethics. This was technically an option – my advisor is a leading Catholic medical ethicist – but I have always been way too squeamish to spend all that time thinking about gross and depressing medical problems. (Instead I did the ethics of war, which was somehow more manageable, don’t ask me why.) Every time someone says – oh, how could anyone possibly decide between x and y, I think, man, you have no idea the kinds of conversations ethicists have – that ethicists *have* to have – all the time. I certainly hope the special ed teachers are at the front of the line for vaccines and that a vaccine for children is approved soon.
This is unfortunate:
“The empty room echoes what new data underscores: so far, more than 400,000 patient courses of both the monoclonal therapies from Eli Lilly and Regeneron have been allocated to the states, and more than 250,000 have been delivered — but very little of what has been distributed is actually being used. ABC News confirmed the findings of a new U.S. Department of Health and Human Services report which shows that only 5-20% of that available supply has been used — strikingly low uptake of what could be a “lifesaving intervention” for some COVID-19 infections as case counts surge across the country.”
This is the therapy that Trump got. I know people have been concerned about line-jumping with regard to access to monoclonal therapies–but they aren’t being used as much as they could be. The process of figuring out who is a good candidate is somewhat complicated.
“As of Thursday morning, 160 patients had received the therapy in El Paso, Michelson said. That is just 10% of the some 1,600 courses allotted to the city.”
My sister is actually administering Regeneron to COVID patients at her hospital (my sister is actually in charge of the outpatient chemotherapy program and swings where needed). There are specific guidelines about who can receive this treatment (I think over 55 years old or having a comorbidity – don’t quote me on that). Also, the parents of my friend who got COVID both got Regeneron (in a different state).
Just a few data points.
Wendy said, “My sister is actually administering Regeneron to COVID patients at her hospital (my sister is actually in charge of the outpatient chemotherapy program and swings where needed). There are specific guidelines about who can receive this treatment (I think over 55 years old or having a comorbidity – don’t quote me on that). Also, the parents of my friend who got COVID both got Regeneron (in a different state).”
“About 65,000 doses are distributed to states by the U.S. government every week.
Only 5-20% of the doses are actually getting used, Operation Warp Speed’s Moncef Slaoui said.”
It needs to be given early on and ideally before the patient is hospitalized, so I can imagine that there might be some issues getting to high-risk patients before they get sick.
In other irritating news, this was was happening in November and may still be happening:
“The Wall Street Journal reports that a federal survey of nursing homes found that 30% of 13,150 facilities that had rapid testing equipment for at least two weeks did not use it to test a single resident or staff member, even when regulations from CMS required them to do so.
“Barbara Klick, chief executive of Sholom Community Alliance, which uses a lab to test staffers at its two nursing homes in Minnesota, told WSJ that using the rapid testing equipment sent by the government requires too much staff time, with false-negative and false-positive result potential making users wary of reliability.”
“In addition to homes that didn’t use the devices, WSJ said another 16% reported using the tests on fewer than 20 residents and staff members. Also, 48% of the homes reported that they hadn’t used their rapid testing equipment in the most recent week included in the data (week ended Oct. 25), with 41% of homes that were required to test staff at least once a week saying they hadn’t used it in the most recent week. Those homes said they were waiting a day or more for lab results instead.”
That’s really awful, given how bad November was for COVID in most of the US.
I had read that the nursing homes weren’t using the tests because they weren’t giving accurate results, particularly too many (false) positives that made staffing impossible. Now the staffing issues are a problem too, but they are endemic in our nursing care system, where staff are treated as low skilled, low paid, expendable employees.
bj said, “I had read that the nursing homes weren’t using the tests because they weren’t giving accurate results, particularly too many (false) positives that made staffing impossible. Now the staffing issues are a problem too, but they are endemic in our nursing care system, where staff are treated as low skilled, low paid, expendable employees.”
Speaking of nursing homes, I see there’s some trouble with vaccine refusal among staff:
As Alice from Queens points out, there is a very simple fix for this, given CNA pay levels:
Washington does not have guidelines fir phase 2 deployment of the vaccine, which is when these decisions will get more complicated.
I think the 65+ versus essential worker question is fairly simple, and I vote in favor of 65+. They say that you cut down total cases by doing essential workers first, but it costs more lives, and I don’t think that’s even a hard question.
Also, Matt Yglesias has said some smart things about age-priority being really clean and simple and fast to deal with in the real world. Here’s the UK prioritization scheme:
1. care home residents and workers 2. 80+ and “health and social care workers” (not sure if that covers teachers) 3. 75+ 4. 70+ and “clinically extremely vulnerable” people (but not pregnant women or under-18s) 5. 65+ 6. 16-65 people who are at risk 7. 60+ 8. 55+ 9. 50+
I think that’s a good plan and the US should feel free to steal and modify it.
With regard to the problem of the high-risk young, I was just looking at this:
I don’t know how accurate it is, but the twitter guy says, “These estimates are from Israel, but striking: vaccinate the 0.5% of people over 90, and total fatality risk drops 19%. Vaccinate the 2.5% over 80, and it falls by half. Vaccinate the 7.5% over 70, and it drops by 3/4. Age skew remains under appreciated.”
Not a public health person, but if that’s true, that suggests that once we get the 70+ crowd vaccinated, there’s going to be a lot of breathing room for prioritizing younger high-risk people. (On the other hand, Israel does have a somewhat younger population than we do.)
In my county, people 60 and over are only 17% of the COVID cases but do 88% of the dying.
I do not vote in favor of 65+. I would vote in favor of cutting down the speed of transmission, i.e., the people most likely to come into contact with sick people are the most likely to spread it.
I’ve seen reports online that construction workers have high rates of covid. I would move them to the front of the line, along the other professions listed below:
A new study tracking the results of more than 730,000 COVID-19 tests found that construction workers had the highest positivity rates for asymptomatic cases of any occupation, including healthcare staff, first responders, correctional personnel, elderly care workers, grocery store workers and food service employees.
That makes sense to me. Construction workers are far more likely to have to use a porta potty while working. They are more likely to be working with the plumbing and HVAC systems that carry infectious material. Anecdotally, our plumber and carpenter have had a terrible time with employees becoming sick.
It takes longer for older immune systems to develop immunity to a disease after a vaccination. One infected grocery worker could infect dozens or hundreds of people, all of whom go on to infect their elderly relatives before those old people can develop immunity.
It could well be that vaccinating children would be the best way to go. For example, the vaccination of young children for pneumococcal disease significantly cut rates for that disease in people over 65. https://www.cdc.gov/vaccines/pubs/surv-manual/chpt11-pneumo.html Note that infants have a much lower incidence rate and death rate with pneumococcal disease than people over 65, but vaccinating them caused incidence rates to fall by 70%.
Schools being open may not cause cases in the schools, but young, healthy children could be an engine for disease spread.
Cranberry said, “I’ve seen reports online that construction workers have high rates of covid. I would move them to the front of the line, along the other professions listed below:”
The problem is that that group is enormous. I was seeing somebody on twitter saying that “essential workers” is a 100 million person group–so it destroys the whole point of prioritization. The nice thing about really old people is that there aren’t that many of them:
85+ under 7 million
80-84 6 million
75-79 under 10 million
70-74 14 million
70+ is a group well under 30 million. Plus, a lot of the very elderly are already being vaccinated in nursing homes and not everybody eligible is going to want to be vaccinated, so it’s going to be a significantly smaller number than 30 million who are a) not covered by nursing home vaccinations and b) willing to be vaccinated. We could wind up getting through the 70+ group surprisingly vast–there’s supposed to be enough vaccine for 100 million people by the end of February.
I somehow can’t find the COVID age mortality chart, but as I recall, 70 is where the COVID mortality rate jumps to nearly 10%.
Another factor is that hospitalization rises with age, just as mortality does, and we’re all really worried about keeping hospitals under capacity.
Compared to 18-29 year olds with COVID, 85+ people with COVID are 13X more likely to wind up hospitalized, people 75-84 are 8X more likely, people 65-74 are 5X more likely, people 50-64 are 4X more likely, etc. So there is a public health point to vaccinating older people faster (maybe especially 75+ or 70+?), even if they are lower risk for catching it and spreading it. And again, Matt Yglesias is right that an aged-based scheme is going to be a lot easier and more objective to implement. That’s got enough, but I think I’d start with that and work in younger people maybe once 75+ or 70+ have had a shot at the shot.
Maybe split the difference with a single dose regime for essential workers until the second dose is available?
I see the CDC has been freshening up their approach:
Meg Tirrell (of CNBC) tweets:
“CDC #ACIP votes 13-1 in favor of recommendation to prioritize groups for #covid19 vaccine:
1b: 75+, frontline essential workers
1c: 65-74, high-risk, other essential workers.”
That sounds good!
Yes, conserving hospital capacity is the consideration that inclines me to favor moving old people (say, 70+, but it doesn’t have to be there exactly) to a high priority.
Click to access 02-COVID-Dooling.pdf
If you look at page 10, there’s a list of types of essential workers, totaling 87 million people.
“Frontline” essential workers are 30 million people: first responders, schools/daycares, food and agriculture, manufacturing, corrections, U.S. postal, public transit, grocery store workers. OK!
The next group is “other essential workers.” That’s 57 million people: transportation, logistics, food service, shelter and housing (construction), finance (?), IT and communication, energy, media (!), legal (!), public safety (engineers), water and wastewater.
There are some really questionable choices in the “other essential worker” group. Fortunately, 75+ is going to be mixed in with “frontline” and 65-74 and 16-64 with high risk conditions are going to be mixed in with “other essential workers.”
I get how some people in law are essential (like people who have to go to court or jails), but man.
The total current US workforce is about 160 million, so over half of US workers are “essential.”
…and that’s part of how it’s been spreading. “Essential” workers have had fewer restrictions than other workers. Locking down less than half the population was never going to stop it.
There is probably a viral load component. That is, the people who have been exposed to the most viral particles will get more severe cases. That is very bad news for people providing direct healthcare, and first responders (the people who transport the very sick from their homes to the hospital.) You may not know, but some patients are fragile enough that they need to be transported by an ambulance to the hospital. That means that those workers need to be immunized first, because they are exposed to more virus than people who have been sitting around in their summer houses, away from the city.
For those who are interested, the Massachusetts plans are as follows:
Phase one will run from December to mid-February, offering vaccines in descending order of priority to health care workers, long-term care facilities, first responders, congregate care settings including both shelters and correctional facilities, home-based health care workers and health care workers who do not interact directly with COVID care.
Phase two runs from February to April. Adults with two or more comorbidities that create risks for COVID-19 complications would be first in line, followed by workers in fields such as transit, education, and grocery stores, then adults 65 years old and older and individuals with just one comorbidity.
Phase three is aimed to start in mid-April, when the vaccine would be available to everyone else in Massachusetts.
So the 65+ set are slotted to start receiving it in April, after those with 2 or more comorbidities. I would put grocery store cashiers and bus/trolley drivers in phase one. The majority of deaths in Massachusetts have been in group care homes, so placing the patients in those homes at the front of the line makes sense.
As of today, 60.9% of the deaths in Massachusetts have been in long term care facilities. Age is too blunt a measure. There are about 20 million people over the age of 75 in the US. The first doses must be targeted to those people at greatest risk of dying and/or spreading the disease to the vulnerable.
“You may not know, but some patients are fragile enough that they need to be transported by an ambulance to the hospital.”
Wouldn’t they have been covered by the initial “health care worker” category? If not, that was a big oversight.
“So the 65+ set are slotted to start receiving it in April, after those with 2 or more comorbidities.”
Wow, that’s going to kill a lot of people. April is a long time from now.
I’m also pretty sure that the two versus one comorbidity thing is going to be sticky in practice. For example, I know a guy (my oldest’s old music teacher) who is about 50 and is on the wait-list for a heart transplant. He’s had a number of brushes with death the last couple years. Somebody could easily have two comorbidities and be in better shape for COVID than he is with just one.
But at least Massachusetts is not prioritizing legal, media and finance!
States are getting vaccine allocations based on state populations and not the population in the targeted category, so that will also be something to be considered (and will influence how states deploy their vaccines) as long as vaccines are in short supply.
I don’t think the broad categorization of workers in the essential categories will be binding on how states define the specific workers and where they are in line. My guess is being officially an “engineer” will not move you to the front of the line, but will allow a state/company to designate individual engineers (say, one who fixes HVAC systems) as frontline essential.
I don’t know if this is one of the stated goals of the vaccine deployment, but I do believe that in the long run, getting vaccine compliance will depend on many people in the population knowing someone who has received a vaccine and is doing well. I now know 5-10 people who have received the vaccine. Giving the vaccine to a broader array of people, and not just those at highest risk for death serves that goal (in addition to protecting those we are requiring to work and put themselves at risk for disease even if they survive and those who we need to keep working rather than quarantining, or recovering from disease).
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