Every day in September, Bethany Van Delft agonized about her daughter’s education. The 9-year-old, known as Lulu, longed to return to the Henderson Inclusion School in Dorchester, her second home since she was 3, where caring teachers help her keep up with her class. But her history of severe respiratory illness — a common problem for people with Down syndrome — makes in-person school too risky, said her mother, until the little girl can be vaccinated.
It took weeks for her family to identify a safe way for Lulu to keep learning. She missed a month of fourth grade as they struggled to find and access the state’s home-based learning option for medically at-risk children, the only path available to keep her safe at home, yet still connected to her school, under the state’s strict ban on remote education this fall. As of Friday, she still had not begun receiving instruction.
Meanwhile, in Mattapan, another Boston mom is agonizing, too. Zoraida Ramon was frightened to send her son Axel back into his high school, Boston International Newcomers Academy, because of health risks stemming from his history of childhood brain cancer. But Ramon, who emigrated from the Dominican Republic three years ago in search of better medical care for her son, does not speak English. She never heard about any remote option. And so she sent her son to school.
“If they had offered it, I would have taken it,” she said in Spanish. “All they said was that we had to go back in person.”
Weeks into the new school year, an unknown number of families across the city and state continue to struggle with a keenly painful dilemma: how to balance their children’s health and their education. Some, like Ramon and Van Delft, faced delays and obstacles in tracking down online options for vulnerable students, or never learned about those options.
Others say they sense an underlying disregard for their at-risk children, and their safe return to school, with child vaccines still unavailable and campaigns under way to abolish school mask mandates. State Education Commissioner Jeffrey Riley said in August that he will seek “off ramps” to masking in schools; meanwhile, parents have filed multiple lawsuits seeking an end to the mandate.
So far this fall, small numbers of the state’s 920,000 public school students have tested positive for coronavirus: between .2 and .25 percent, according to state data. And while children have been infected at higher rates than adults in recent weeks, because they lack access to vaccines, the vast majority experience mild symptoms.
But for parents whose young children face a higher chance of life-threatening complications, even a small risk is intolerable.
“The view is that ‘All kids do better in person, and most kids don’t get COVID,’” said Van Delft. “So what that means is, my kid doesn’t matter.”
Two weeks after Lulu was approved for remote instruction, under the state’s medical exemption, she still does not have a tutor, said her mother. In addition, Van Delft’s 5-year-old son, who is not medically vulnerable, continues to miss out on kindergarten, to ensure he doesn’t bring the virus home from school to his sister.
He is “bored and sad a lot,” his mother said. But he is lucky in one way: because of his young age, he is not at risk of permanently losing his spot at the Henderson school — a coveted placement in Boston, because of its unusual commitment to inclusive classrooms. Older students kept home could be found truant and forced to surrender their placements.
“This isn’t like last year, when COVID took over our lives and forced very difficult decisions,” said Van Delft. “These are human beings making these decisions now. … They don’t know us, they don’t know the sacrifices we have made and will continue to make to keep our children healthy and happy, but they’re making this decision for us.”
Van Delft helped start the group MA Parents for Remote Learning Options, which is advocating for wider remote access to school until students under 12 can be vaccinated. A vaccine for children ages 5 to 11 is expected by year’s end.
For most of the last school year, state leaders let local districts craft their own pandemic learning plans, including online options for all families concerned about COVID-19 exposure in school buildings. Even after Governor Charlie Baker ordered all school buildings to reopen for full-time learning last spring, districts were permitted to maintain a remote option.
The state took a much stricter stance this school year, barring districts from offering a standard remote learning option to all students. It preserved a narrow pathway to allow temporary home-based learning for children with medical conditions, with a doctor’s order, through a program known as “Home or Hospital” that predates the pandemic.
The elimination of most remote schooling, touted by Baker as a necessary step to end an ineffective mode of education, put Massachusetts in a small minority of states to take such action.
“We’re perfectly positioned to make sure that kids and adults will be safe when they go back to school,” Baker said in August.
But Van Delft, a comedian and storyteller, and her husband, Jayme Moffi, who works in technology, saw only potential danger to their daughter when they toured her school before Boston’s school reopening and saw the cafeteria where she would eat lunch with other unmasked students, and the mask break area with no windows.
They recalled, with painful clarity, four terrifying nights in November 2019, just before the start of the pandemic, when they slept beside Lulu’s ICU hospital bed, watching her struggle to breathe, her temperature spiking to 104 degrees as she battled an acute respiratory virus. She missed five weeks of school altogether, and spent two more months recuperating.
She had been back at school for just a month when COVID-19 shut down schools statewide in March 2020.
“Her doctors told us, ‘Just make sure she doesn’t get it,’” Van Delft remembers.
When it became clear, this summer, that Lulu still could not safely return to school, with no vaccine for kids and surging variants, her parents frantically pursued other options. But the “Home or Hospital” plan was hard to track down, they said, and was never presented as a clear, viable solution to their problem.
State education leaders say they asked school districts to distribute information about the option to all families, and a spokesman for Boston Public Schools says the district did so, including it in a Back to School Guide sent to families in ten languages on Sept. 2. Links to the guide have been repeated in weekly newsletters. But multiple clicks are required to navigate from the newsletters to detailed information about the medical option, and a “family update” letter sent home on Sept. 30 failed to mention it.
Roy Karp, whose daughter Lucy, 7, has a history of chronic lung disease related to her premature birth, said even families like his, whose children have longstanding medical vulnerabilities and special education plans, did not receive any dedicated communication about the medical option. Though he and his wife are both lawyers, skilled at research and advocacy, Karp said it took them weeks to discover that the option applies both to children currently receiving medical treatment at home or in the hospital, and to others, like his daughter, who has documented vulnerability but no immediate health crisis.
“The way it was framed in public meetings and materials made it sound like a very narrow exception, only for kids who are homebound or in the hospital,” he said.
Fewer than 100 students in Boston have signed on for home learning through the medical option, according to a spokesman. The district enrolls approximately 50,000 students. Medical experts said it is difficult to estimate what percentage of school-age children are medically vulnerable to COVID-19. But Dr. Lloyd Fisher, president of the Massachusetts chapter of the American Academy of Pediatrics, said only a “very, very small number” of children require remote learning, given current trends in vaccination and infection.
“For any concerned parent, the first step is talking to their care team, who can help put things in context,” said Fisher, a practicing pediatrician in Worcester. Rates of pediatric hospitalization remain low, he said, and transmission in schools appears to be very limited.
Ramon, the mother who was unaware of the medical option until a reporter explained it, said she worries constantly about her affable teenager, who is vaccinated, but struggles with anxiety and disabilities linked to his past brain disease. But she also knows he learns much more easily in person — and that keeping him at home would not guarantee his safety, since his brother, a healthy fifth-grader who is too young to be vaccinated, would not qualify for the remote option.
(Boston Public Schools spokesman Xavier Andrews said the “medical reasons” for remote learning could include high-risk family members, if verified by doctors.)
Roxann Harvey, a leader of Boston’s SpEdPAC, which advocates for students with special education needs, said the group is looking at the quality of home instruction to identify gaps and inequities. “If the Home or Hospital program is not working for our medically complex special education students that cannot be in person because of the risks to their health, we need to fix it,” she said.
Finally last Friday, Karp’s daughter was able to connect with her classmates for the first time on Zoom, joyfully drawing rainbows with colored pencils while chatting with friends.
“It’s October 1st, but TODAY was Lucy’s ‘first day’ of Second Grade!” her dad wrote in a post on Facebook. “THIS is what we have been fighting for ... to be honest, it really shouldn’t have been this hard.”