This August, at a time when many teachers are usually prepping for the new school year, Julia Carr is still wondering if she or her three kids will set foot in a school.

Carr, who teaches high school English along with her husband in Ohio, is trying to game out what is safest for their 6-year-old, Micah, who has type 1 diabetes (T1D). By extension, they’re also trying to decide what is best for their other two children because of the COVID-19 pandemic.

The problem is there are few clear answers for anyone.

Carr said she reads news several hours a day to determine the virus’ risk for children with T1D, but she finds the scientific data contradictory.

First, she hears that people with T1D aren’t at higher risk than the general population of contracting COVID-19, and she thinks safety protocols might work to keep Micah safe.

Then, she hears that shaky blood sugar levels might leave children more vulnerable to the effects of COVID-19 — and she worries. Micah is new to T1D, and it’s hard to keep his blood sugar levels from swinging.

“What I’m wondering is if he has a week of bad sugars and he gets around the coronavirus, it’ll just jump right in and get him,” she said.

Even if Micah’s parents think it’s relatively safe for him to attend school, they wonder about his in-school blood sugar management.

Carr wouldn’t want him hanging around the nurse’s office for a blood sugar check if the nurse is treating sick children, and she hopes there would be someone else who could help. However, that could put another staff member in a difficult position, she said.

“That person would really be learning on the job. Sometimes [Micah] is squirrelly about stopping in the middle of lunch and saying I’m full, and then that person would have to make decisions about [how much insulin] to give him,” Carr said.

She and her husband also worry about her being in close contact with crowds of high school kids and how to protect Micah and the other children from possible exposure through that.

“The worst-case scenario is… I ask for a leave of absence and stay home all year with all three of my kids and teach them, and my husband sequesters in another part of the house. We send him meals through a window,” she said.

Like Carr, scores of parents of children with T1D across the United States are contemplating whether it’s safe to allow their children to return to the classroom in the fall, should their local schools open up for in-person instruction.

There also are a number of teachers with T1D who are pondering whether to return for the school year, ask permission to teach at a distance, or walk away from their jobs out of concerns for their health.

They grapple with many factors that complicate their decision-making process — including conflicting medical information about COVID-19, pressure to return to work in a battered economy, and messaging from some state and national officials that underplays the threat of the virus.

What follows is a guide with information to help parents of children with T1D and teachers who have T1D make the decision about whether to return to school during the COVID-19 outbreak. This guide includes perspectives from many in the T1D community who also are pondering this decision.

When schools closed across the United States in spring 2020, there was little disagreement with the need to pause in-person education. The move was considered necessary to buy time to control the rapidly metastasizing pandemic.

Then, disagreements arose around when to open school again.

President Donald Trump and some state officials favored a more aggressive timetable to reopening businesses. To do this, however, required reliable child care that the public school system provides for many workers in the United States.

Also, COVID-19 appeared to be more of a significant health threat to older Americans, which led some to believe children would be safe in a school setting.

In addition, some national public health officials publicly fretted over the detrimental effects of not having children in school. On July 9th, Robert Redfield, director of the Centers for Disease Control and Prevention (CDC), said, “I think really people underestimate the public health consequences of having the schools closed on the kids.”

There’s also been growing concern that school closures might disproportionately impact the most vulnerable children.

A significant number of children rely on the public education system for essential services that often aren’t available outside of school. School services can help combat food insecurity, provide mental health screening and treatment, and give stability to homeless children, among other things.

Mary Bourque, director of government affairs with the Massachusetts Association of School Superintendents, spent 37 years working in public schools in Chelsea, Massachusetts, which serves families managing economic hardships.

Massachusetts was an early hotspot of the COVID-19 pandemic, but it saw waning numbers of COVID-19 cases in the summer months.

Bourque, whose husband has T1D, understands the trepidation families feel about returning to school and acknowledges the possibility that Massachusetts may need to shut down schools again this year.

However, she said it’s important to bring at least some children back into the classroom to see what services they may need.

“Our students have definitely suffered, our families have suffered, there’s a lot of mental health issues, a lot of depression,” she said. “While things are good, let’s get kids in, let’s get eyes on kids.”

However, there are many reasons to be concerned about pushing to reopen schools too early.

As the number of COVID-19 cases has fallen in other parts of the world, more than 20 countries have opted to reopen schools since June, according to a report in Science.

Public health data from these reopenings is frustratingly scarce. Some schools have done better than others in reopening without a resurgence of COVID-19, but when they go wrong, they go wrong spectacularly and can cause international headlines.

For example, Israeli health officials have sounded the alarm that the move to reopen schools on May 17th was a key culprit in a massive resurgence of COVID-19 cases there.

Israel’s education ministry reported in mid-June that 2,026 students, teachers, and staff contracted COVID-19, and 28,147 are in quarantine due to possible exposure, according to a Daily Beast report.

In the United States, school has largely not been in session. However, the CDC reported that a children’s sleepaway camp in Georgia became the epicenter of a COVID-19 outbreak, even though health officials acknowledge that the camp did many things right to prevent infection.

In just one week, 260 campers tested positive for the virus — a week after testing negative before camp began.

Such outbreaks add evidence to the debate over whether children are a significant vector for the spread of COVID-19. While scientists were initially optimistic that children didn’t seem to be important virus spreaders, recent studies offer a grimmer view of the risks.

For example, in mid-July, a large South Korean study found that students between the ages of 10 and 19 spread the virus as efficiently as adults. Also, a small study published in JAMA Pediatrics found that young children with COVID-19 were found to carry between 10 to 100 times the viral load of adults with COVID-19.

As always, such results should be tempered with the caveat that our understanding of COVID-19 is still evolving.

In addition, some parents and health officials fret over the possible long-term health effects that even those with mild or asymptomatic COVID-19 may yet face.

They point to studies showing that a significant number of those who had mild cases of COVID-19 have reported significant and sometimes debilitating symptoms that have lasted for weeks or months.

Also, the CDC is tracking a rare but serious inflammatory syndrome in children who have shown evidence of COVID-19 infection. Scientists haven’t yet determined whether the virus and this syndrome are linked.

In a recent Beyond Type 1 article, Dr. Anne Peters, director of the USC Clinical Diabetes Programs, said the unknowns about COVID-19 should give everyone pause.

“There’s a real concern that the disease itself, even when asymptomatic, causes inflammation in your lungs that you may not be aware of, that can [be seen] on X-ray and ultrasound,” she said in the report. “And they think that damage, even if you’re 20, or 15, or 10, whatever age you are when you get COVID, we don’t know if 20 years from now it might cause progressive lung disease.”

It’s the unknown effects of COVID-19 infection that give some teachers who have their own children with T1D pause. David (whose last name is being withheld out of concerns for job security) has opted to have his son with T1D begin the school year with distance learning rather than attend the school where he teaches.

David’s family is already separated because of COVID-19. His wife lives in a camper on the property because she works at a health clinic. He is working with his employer, a Nebraska private school, to find a way that he can stay home with his son. The decision came because David grew too concerned about the possibility of a rare chance of heart and kidney damage.

“We do not want our son, who is already at high risk for those complications because of T1D, to get this virus if we can prevent it,” he wrote in an email.

Many teaching advocacy groups also warn that opening schools to in-person learning could put the educational workforce at risk, including many teachers who have underlying health conditions like T1D.

Two of the largest teachers’ unions in Massachusetts, for example, are urging remote-only learning in the fall, citing scientific evidence of the potential of viral spread in poorly ventilated and overcrowded rooms.

Kristen Lewis, who has T1D, is contemplating leaving her teaching position in Texas if her school opts to reopen before COVID-19 subsides. She said that teachers are being asked to put their lives on the line unnecessarily when distance learning is a viable option.

“When I became a teacher, I was fully prepared to lay down my life in an active shooter situation. That happens in this country. As it stands, that’s possible and would be unavoidable,” she wrote in an Instagram post. “This is not that. I did not sign up to be a sacrificial lamb when there is a safe alternative.”

Since the outbreak has begun, there has been concern that people with T1D may be more susceptible to the virus than the general population. But researchers agree that there’s no compelling evidence to suggest that this is the case.

There is less agreement, however, about the health outcomes for those with T1D who contract COVID-19.

Early data coming from China pointed to the fact that people with diabetes experienced a higher rate of complications and mortality than those without diabetes, according to the American Diabetes Association (ADA).

That early data of COVID-19 outcomes often failed to distinguish between what type of diabetes the patient has, and didn’t include important data like years since diagnosis, recent A1C, and other important health indicators.

Scientists believe those with underlying health conditions that can affect the heart, kidney, and lungs might fare worse with COVID-19. That doesn’t include everyone with T1D. In the chaos of COVID-19, it’s sometimes hard to be precise about the past medical histories of admitted patients.

“So much of the ambiguity and lack of clarity comes down to this: All the data we have is based on (medical) coding, and coding is not precise. As time has gone on, it actually has not gotten any better,” said Dr. Jacqueline Lonier, endocrinologist and assistant professor of medicine at Columbia University Medical Center, in a recent DiabetesMine report.

There seems to be strong agreement among diabetes healthcare providers that those with T1D who maintain their blood sugar levels increase their chances of having a less severe bout of COVID-19, should they contract it.

In a pandemic filled with so many variables, that’s one factor that people might be able to influence, according to Crystal C. Woodward, director of ADA’s Safe at School Campaign.

Meanwhile, there are clearly no guarantees when it comes to the COVID-19 pandemic, and people must make the best choices possible based on the information at hand.

While national publications may offer a lot of information about the disease’s trajectory across the country, it’s important to also follow local sources of information about COVID-19, according to Dr. Christa-Marie Singleton, senior medical advisor at the CDC.

“As we say, all politics is local. All disease tends to be local, so the first place that we recommend you look is your state or local health departments,” Singleton said in a recent webinar on COVID-19 and diabetes.

Furthermore, those searching for one right answer about whether a child or teacher with T1D should attend school may not find one. What might be the best choice for one household may not be the best choice for another, according to Dr. Francine Kaufman, a pediatric endocrinologist and chief medical officer at Senseonics.

“In the end, this is going to be an individual decision between you, your spouse, and your child if they can assent or consent, and maybe your healthcare provider,” Kaufman said in the same webinar.

Also, parents shouldn’t feel pressured to have their children attend school if they’re concerned about the risks of COVID-19 exposure, according to Bourque.

“It’s not a judgment on parenting if they choose to keep their child out,” she said.

As of mid-August, some schools are fully reopening, others are going fully remote, and many are offering hybrid models that offer part in-school and part online learning opportunities.

Which school offers which doesn’t always correspond with the number COVID-19 cases in the state, however. For example, many school districts are opening for full in-person learning in Georgia, a current COVID-19 hotspot, while some schools in the Massachusetts area are choosing remote learning despite low rates of virus infection.

Among the school districts choosing to reopen, there is a lack of uniformity about steps to reduce risk of COVID-19 exposure.

Schools may opt to reduce class size, require masks or face shields, enforce social distancing, discontinue hot lunch service, reduce the length of the school day, require daily temperature checks at home or at the school entrance, or group students within a single cohort with a teacher.

Should a student at higher risk, like someone with T1D, opt to stay home for distance learning even when others are returning to school, the goal is for them to receive the same educational experience as those who attend in person, said Singleton.

In practice, though, this will be difficult to manage. Some students will be invited to web events, when possible, and given work that can be done remotely — which for younger kids will likely require a lot of help from parents.

Many older students may be able to navigate such distance learning largely independently, but the school day may likely still feel a lot like homeschooling.

Woodward reminds people that the rights of students with diabetes do not go away during a global pandemic — even in an online learning environment.

Students with T1D are entitled to have a 504 plan, a written plan developed to ensure that any child with a disability recognized under the law receives the necessary accommodations to ensure their academic success and access to the learning environment. (Under the law, T1D is considered a disability, but Woodward emphasizes that this is a “legal term of art.”)

Should the student with T1D also have an identified learning disability, either related or unrelated to diabetes, they’re entitled to an Individualized Education Plan (IEP). Both plans should provide special accommodations for when education conflicts with daily blood sugar management or doctor’s appointments.

Even if such plans are already in place, they should be updated with language specific to COVID-19 that outlines how the school will safeguard the health of the student with T1D.

Even if you have a good relationship with the school and they have been proactive during the pandemic, parents should never assume everyone is on the same page without written agreements.

504 plan accommodations for distance learning might mean students get more time to complete assignments, or will not be required to attend an online class if they are encountering issues with blood sugar management, for example. In theory, it also means they should have continued access to school health officials if they want advice for navigating blood sugar management during the school day.

“With so many unknowns and so many things to figure out in some districts in a very short amount of time, I’m concerned about whether the planning for diabetes management and care for children with diabetes could get lost in the shuffle,” said Diana Isaacs, spokesperson for the Association of Diabetes Care & Education Specialists.

For those with concerns about a school nurse overseeing both possible COVID-19 cases and T1D care, it may or may not be possible to delegate diabetes care to another school staff member.

Individual states have different laws about whether others can take on health care duties, according to Joyce Boudoin, a parent of a child with T1D and an ADA advocate.

“It’s always advisable to put accommodations in place, always. I always say, ‘If it’s not in writing, it’s never said,” Woodward said.

Singleton said: “One of the things we at the CDC have been advocating for… is making sure that children have access to a learning environment. That if they miss school for any reason, that they are able to make up any work without penalty, so that their learning will continue. If it does not happen in the classroom, so be it.”

That being said, an epidemic has scrambled the school experience for many, and will likely do so for some time to come. Woodward cautions that sometimes it will take flexible thinking to make the educational experience work.

“I really encourage… everyone to be open minded,” she said. “There are so many unknowns. We’re all returning to a new normal, so we need to be reasonable in our expectations.”

Marilynn (a pseudonym to protect her job security) is a school administrator with T1D who provides academic support to students who need accommodation. The Midwestern private school where she works has elected to open fully this fall, and she is worried they will not let her continue to work remotely.

“I’m already thinking that if this goes on for over a year I don’t know if my value will be the same from afar,” she said. “A couple of weeks ago, my boss very casually said, ‘Are you going to have enough to do?’”

She doesn’t want to stay away from the school, but her healthcare team has recommended against her regularly going into her office during the school day.

At first, she said the school was accommodating, but now the director has asked her to submit a doctor’s note about her T1D for the first time. Adding to the pressure, there is another staff member with T1D who is planning to teach in the classroom.

“This puts me in the position that makes me seem like the cautious one,” she said.

She is not alone in being concerned. Some teachers are concerned because they have T1D, while others are worried of potentially exposing family members with T1D.

Many teachers interviewed for this story expressed concern that they are being placed at the crossroads of populations of students. Anita Nicole Brown, an actress and model who teaches ballroom dancing in the Chicago area, notes that last year she taught at six different schools.

Daniel O. Phelan is CEO of the Type 1 Action Foundation, which provides legal guidance on the rights of people with type 1 diabetes. Phelan said that teachers with T1D or those who care for someone with the condition have the legal right to request to teach remotely.

If classes are in-person, those teachers should request a teacher’s assistant be placed in the classroom to allow the teacher with T1D to teach remotely.

All requests for accommodation should be made formally in written correspondence, he said. There are strong grounds for such an accommodation because almost everyone was teaching and attending school remotely in the spring, he said.

Should a teacher not receive these accommodations, he recommends that they should file a discrimination charge with the United States Equal Employment Opportunity Commission (EEOC) as fast as possible, as they only have 180 calendar days to file a charge of employment discrimination from the date of the discriminatory act. While the situation may grow tense, it’s important to be reasonable and non-confrontational as possible with your employer, he said.

“It is better to file an employment discrimination claim while still working for your employer, and have the EEOC act as a mediator to resolve the situation, rather than having to look for a new job,” he said in an email interview. “This is of even greater importance now that such a significant number of people are unemployed due to COVID-19, and the job markets have become incredibly competitive.”

Teachers who are members of a union should speak with union representatives to learn what safety precautions have been put in place and what precautions are still being discussed, Sarah Fech-Baughman, director of litigation at the ADA, told DiabetesMine.

Teachers may also be able to seek guidance from their union regarding how to request a reasonable accommodation and what particular accommodations might be deemed reasonable by their school’s administration.

The decision on whether to return to school during the COVID-19 pandemic may be a complicated one that involves many factors for each household. In addition, the conditions of the pandemic are rapidly changing, and we are learning new things about how the virus spreads every day.

Experts agree that it’s good to be cautious, and to discuss the decision with your healthcare team, which should include a diabetes specialist. Also, it is okay to revisit the decision as conditions change.