A Boy With An Autoimmune Illness Was Prepared To Be taught In Individual

Aug. 26, 2021

When the coronavirus first swept across Florida last year, Angela Gambrel did everything she could to lock down her home in Sumter County, northeast of Tampa.

Her 10-year-old grandson Jayden has a rare brain disease that disrupts his immune system and impairs his memory, making it harder for him to process complex tasks. His doctors urged her to take every possible precaution against the virus. No more supermarket runs. No more football scrimmages with his Special Olympics team.

Jayden’s school, like others across the state, halted in-person instruction, distributing worksheets to students to complete at home. The only time Jayden was around other people was when he had bloodwork done or underwent his monthly treatment about an hour away at Tampa General Hospital.

When schools reopened last fall, Gambrel, who’s been Jayden’s guardian since he was a toddler, kept him and his brother home, unwilling to risk exposing Jayden to a virus the world was just beginning to understand.

But without the intensive in-person instruction that he had been receiving for years, Jayden struggled, unable to keep up with his coursework.

Watching him languish, Gambrel knew he needed to go back to school as soon as it was safe, and so she was relieved to hear last month that the Centers for Disease Control and Prevention was advising school districts to have students and teachers mask and socially distance and to vaccinate staff. Jayden, she thought, could finally go back to school in person.

But a few days later, her plans were scuttled by Florida Gov. Ron DeSantis, a Republican, who imposed a statewide ban on mask mandates in schools. Without assurances that all the students in Jayden’s school would be masked, Gambrel decided she could not take the risk of sending him back to the classroom.

“If they could just require masks, then these boys could have a life,” Gambrel said.

As children have begun returning to classes this month in many parts of the country, the delta variant has dashed hopes of restoring something approaching normal life, upending school reopening plans everywhere and reigniting bitter fights over masking and other public health precautions.

For families whose children are too young to be eligible for vaccinations, the delta surge has once again left many parents weighing the risks of in-person learning, especially in states that are bucking federal recommendations to impose universal masking in schools. Some families have reluctantly shifted back to virtual instruction. Others have pulled their children out of the public school system altogether, opting for home-schooling.

But for families like the Gambrels, the stakes are exponentially higher. Children like Jayden, with complex health conditions, often are among those most in need of direct, specialized instruction that can only be delivered in person. Those same health conditions can also put children like Jayden at higher risk of infection and illness.

Nationwide, about 7.3 million students have significant disabilities that impact their education. About 15% of these students receive special education services for health conditions that limit their ability to learn, which include common conditions like diabetes, asthma or epilepsy, as well as rare disorders.

COVID-19, of course, is a new disease and researchers are a long way from fully understanding how it affects people with underlying medical conditions, especially children, who in the first waves were less likely to be sickened by the coronavirus. But the CDC says the “evidence suggests that children with medical complexity, with genetic, neurologic, metabolic conditions, or with congenital heart disease can be at increased risk for severe illness from COVID-19.”

Chronic diseases affect millions of children nationwide. For example, more than 6 million kids suffer from asthma, over 200,000 live with Type 1 diabetes and more than 14 million are obese.

For medically vulnerable children, schoolwide masking is essential to allow them to safely return to school, health experts say. And being forced to stay at home while other students are able to learn in person could run counter to federal education law, which prohibits children like Jayden from being unnecessarily isolated because of their disabilities.

“All people with disabilities should receive services in the most integrated setting appropriate,” said Ron Hager, managing attorney for education and employment at the National Disability Rights Network. “If not for the mask mandate, these kids could be educated in the most integrated setting.”

With infections surging among children just as they are returning to classes, the fight over mask mandates is intensifying. Parents and civil rights groups have launched legal challenges against mandates in several states. Administrators in some school districts are ignoring state bans and imposing universal masking. And in Washington, President Biden has decried the politicization of public health measures like masking and directed his administration to ensure that state officials are taking the necessary steps for students to safely return to the classroom.

The administration has sent letters to eight states that have blocked mask mandates — Florida, Texas, Tennessee, Iowa, Arizona, Utah, Oklahoma and South Carolina — to tell them their policies violate “science-based strategies for preventing the spread of COVID-19,” and the Department of Education said it may open civil rights investigations in states that block universal masking.

“We are not going to sit by as governors try to block and intimidate educators protecting our children,” Biden said last week at a White House news conference.

Four years ago, Jayden entered first grade as an energetic 6-year-old who loved learning so much that he assigned himself extra homework after school. Soon after, he began to have episodes of extreme agitation, crawling on the floor and even hallucinating. When he stopped eating and sleeping, he was hospitalized; doctors diagnosed him with autoimmune encephalitis, a rare disease in which his own immune system attacks healthy brain cells and tissues.

The effects have been profound. His memory is impaired. His cognition has slowed. His behavior has turned erratic. “In the blink of an eye, he can go from being calm to all of a sudden he’s destroying the house,” said his grandmother.

“The warrior soldiers in your body,” Gambrel said, recounting how she explained the disease to her grandson, “their job is to protect your body and fight off germs and ickies, but your warrior soldiers are crazy, they attack the good guys.”

When Jayden returned to school after his diagnosis, Gambrel met with the administration to create a formal plan, known as an Individualized Education Program or IEP. Not only was Jayden learning at a slower pace, he also required one-on-one assistance throughout the day. Jayden started to improve, particularly after he began a new treatment of intravenous immunotherapy. He retained information better and engaged more with other kids.

But when the pandemic shut down schools, Jayden and his 9-year-old brother, Eli, who has autism, were thrust into a bubble of isolation to keep Jayden safe. “He misses kids, he misses people,” she said, but “a lot of people were dying, and he didn’t want it to be him.”

The district, which serves about 9,000 students, gave Gambrel three options: in-person schooling, a remote live classroom or a full virtual program where children could learn at their own pace. Worried about COVID-19 as well as Jayden’s limited attention span, Gambrel opted for the full virtual program, which used curriculum and software from Florida Virtual School, a statewide online education provider.

Gambrel understood that her grandsons would not have the one-on-one support required in their IEPs, but she did not expect the year to be the “nightmare” she experienced. Though online instructors graded worksheets and tests and could troubleshoot technology issues, they did not provide direct instruction and were difficult to track down for help with lessons, she said. The teaching fell on Gambrel, 56, who also worked from home as a medical billing administrator.

The pace of the online curriculum also moved too quickly for her grandsons. Gambrel said she felt that her family had been abandoned.

“It just becomes overwhelming, and they shut down and want no part of it,” she said. “We were falling so far behind that we pretty much had to give up.”

Hailey Fitch, a spokesperson for Florida Virtual School, said that its “courses are designed to offer students the flexibility to move at their own pace, but teachers play a critical role in ensuring the success of students.”

Gambrel knew that her grandsons needed to be in school learning from an experienced teacher, and when she saw the federal guidance recommending that students wear masks and socially distance this fall, she believed the precautions would allow her boys to return to school.

Pediatricians and virus experts have backed the federal guidance, especially on masking in the classroom. Dr. Lawrence Kleinman, a professor of pediatrics at Rutgers Robert Wood Johnson Medical School in New Jersey, said that until vaccines are authorized for young children, masking is the most effective preventive measure.

“In a world in which children are not vaccinated and the virus is circulating in the community, both teachers and kids as well as staff need to be masked,” he said. “From the very beginning we began this with a myth: that the virus spared kids. That myth has infected our thinking even as we’ve learned that it’s not true.”

But Gambrel’s plan to send her grandsons back to school changed when DeSantis announced that no Florida school district would be permitted to mandate masks. “We should protect the freedoms and statutory rights of students and parents,” the governor wrote in his order, claiming that giving parents the choice of whether to mask their children would help kids with disabilities and medical ailments, who would be harmed by wearing a mask.

In a statement this week to ProPublica, DeSantis’ press secretary, Christina Pushaw, inaccurately claimed that there is no evidence that “mask mandates work to keep kids safe and healthy” and said health experts were giving families a false sense of security: “This is nothing more than government-sanctioned misinformation, and it’s potentially dangerous.”

In criticizing those recommendations, which she said were “unfair to parents of immune-compromised kids,” Pushaw mentioned only “cloth face coverings.” Some other types of widely available masks, such as surgical and KN95 masks, are more effective at preventing transmission, but experts have said a face covering of any sort is better than none.

Gambrel’s district followed the governor’s order, opening schools with masks optional. She was dismayed. “The state’s attitude is to send them in, no problem,” she said. “And they do need to be in-person, but they’ve not taken any measures to make it safe, especially with delta.”

While Sumter County has abided by the governor’s order, several other districts in Florida have defied it. At least seven districts, including those that include Fort Lauderdale, West Palm Beach and Tampa, have started the school year with some kind of masking requirement. In response, DeSantis has threatened to withhold state dollars from the districts, prompting the Biden administration to offer additional federal relief funds to districts that receive financial penalties.

DeSantis’ approach to masking has also prompted legal challenges. In early August, a handful of parents of children with disabilities and complex medical needs sued the state, claiming the ban violates the Americans with Disabilities Act.

“Preventing my kid from going to school safely is a violation of federal law,” said Judi Hayes, a plaintiff in the lawsuit and a mother of a child with Down syndrome. “Parents are terrified. … We feel like we’re ticking time bombs.”

In response to the lawsuit, Pushaw defended the governor’s position, saying that “under Florida law, parents have the right to make health and educational decisions for their own children.”

Once Gambrel knew her grandsons would be virtual again, she recognized they would need more support than what they had received in virtual instruction last year, so a week before school began, she reached out to the district to discuss her options. No one responded, so she called the state education department, which told her, she said, that when she signed a home-schooling form to opt in to the virtual program last year, she had effectively withdrawn her grandsons from the public school. And that meant they were no longer entitled to the disability accommodations and services that were part of their IEPs. The Florida Department of Education did not respond to specific questions about services for students with disabilities in virtual schools.

Gambrel was baffled. She recalled signing a form indicating that she was selecting home school, but she didn’t realize that by selecting the virtual program the district was pushing, she was taking her grandkids out of the local school system.

“I didn’t expect to have all of their needs met through virtual, but I never dreamed that we would sign our rights away,” she said.

Deborah Moffitt, the assistant superintendent of Sumter County School District, said that her staff spent ample time explaining to families the various learning options, which had been presented to the school board. In response to ProPublica’s questions about accommodations for students with disabilities, she said the district is “no longer obligated to provide services to students when their parents enroll them in home education utilizing the asynchronous model of virtual education,” adding that families had to sign a form indicating their intention to home-school.

For this year, Gambrel has kept her grandsons in the same program as last year, while looking for a new online program that will accommodate their needs.

As schools have slowly opened up across the country this fall, reports of classroom outbreaks and overwhelmed pediatric units have rattled the nerves of parents, many of whom are alarmed that the highly transmissible delta variant may affect children more than previous iterations of the virus. In Sumter County, 164 students and 31 staff members tested positive in the first two weeks of school, according to the district’s public reporting.

Dr. Dean Blumberg, chief of pediatric infectious diseases at UC Davis Children’s Hospital, said children with certain underlying conditions are at higher risk for severe COVID and are the pediatric patients most ending up in intensive care units.

Blumberg said masking in schools is common sense.

“It makes sense to take advantage of every tool possible to decrease transmission to make sure kids can go to school safely and to prevent children from being required to do distance learning,” he said.

According to the American Academy of Pediatrics, new child infections have increased about 820% over the past seven weeks, with 180,000 cases reported last week, compared with only 19,500 cases tallied for the first week of July. As cases in children climb, many districts are scrambling to reintroduce remote schooling for quarantined children.

In some of the states that have banned mask mandates, officials had already decided to limit or eliminate virtual options in an effort to ensure students returned to in-person learning. But many of those decisions were made before the surge in infections from delta, and that has left many districts ill-equipped to pivot back to virtual learning.

Texas Gov. Greg Abbott, a Republican, has been one of the country’s most vocal opponents of mask mandates, and his administration has stopped providing funding for remote learning. This has forced districts that want to resume online schooling to pay for it themselves.

In McKinney Independent School District in the northern suburbs of Dallas, schooling is only offered in-person, leading some families to feel pushed out of the public education system altogether.

When Colandra Ashley, a mother of two girls, ages 6 and 8, both with moderate asthma, learned that the district would not have a mask requirement, she realized that she and her daughters were stuck.

Ashley had been hospitalized as a child because of asthma, and she did not want to risk her own daughters’ health. Her family had also lost five members to the virus. “To lose so many people and to have people be so careless, it frustrates me,” she said. Her family’s loss compelled every remaining adult to get vaccinated as soon as it was available, but her daughters are still too young.

Without a mask mandate, Ashley said, she is not comfortable sending her daughters to school. “I feel my hands are tied,” she said.

The district, which spent nearly $70 million on a new high school football stadium that opened in 2018, said that it would not provide an online option for parents, citing a lack of state funding. The district did not respond to a request for comment.

Ashley, who before the pandemic was studying to be a teacher, withdrew her daughters from the district last week and started home-schooling them with the help of her mother. They have already planned field trips to local parks and ordered biology labs. When her daughters are able to be vaccinated, she intends to reenroll them for in-person school.

Collin County, home to McKinney ISD, has refused to institute a mask requirement in response to the delta variant, even as the region experiences ICU bed shortages. Facing criticism on how the lack of a mandate might impact schools, top county official Chris Hill defended his decision, stating “freedom is more important than education.”

Other districts in Texas have created virtual programs to address the needs of families who do not feel safe sending their children back into schools. The Fort Bend school district, southwest of Houston, is using federal relief funds to pay for a remote learning program for a small group of students. The district said on its website that the virtual program will cost an estimated $10 million, including loss of funding from the state.

Sherry Williams, the district’s spokesperson, said the virtual program is limited to students with a medical history or diagnosed condition that puts them at a higher risk of severe illness from COVID-19. The district is continuing to review the 5,000 applications it received for the program, of which 1,041 students have qualified as of Aug. 19.

On Monday, Fort Bend’s school board approved a mask requirement for students and staff. Last week, the Texas Supreme Court had allowed mask mandates put in place by local officials to remain in place while the state challenges them.

Separately, a group of 14 students with disabilities filed a lawsuit last week against Abbott and the state’s education commissioner, Mike Morath, asserting the mask mandate ban violates students’ rights and excludes them from participating in public education.

“Governor Abbott has been clear that the time for mask mandates is over; now is the time for personal responsibility,” said Renae Eze, the governor’s press secretary, in an emailed response to ProPublica’s questions. “Parents and guardians have the right to decide whether their child will wear a mask or not, just as with any other decision in their child’s life.”

Eze said that districts in Texas are implementing a variety of safety precautions, from learning pods to enhanced hygiene, and that families of immunocompromised children also have the option of virtual learning, though the enrollment for these programs is limited. Eze did not respond to questions about the impending suit.

“Governor Abbott cares deeply about the health and safety of disabled students, as he does for all Texas students,” she said. “Since his accident that left him paralyzed, the Governor has worked throughout his career to protect the rights of all those with disabilities in Texas.”

Other states have backtracked on earlier decisions around masks. New Jersey Gov. Phil Murphy, a Democrat, announced in June that there would be no statewide mask mandate for students returning to school in the fall. Instead, the decision would be left up to individual school districts.

Amid rising case numbers, in large part driven by the delta variant, Murphy reversed course in early August, implementing a statewide mask mandate for schools.

“Anyone telling you that we can safely reopen our schools without requiring everyone inside to wear a mask is, quite simply, lying to you,” Murphy said in his announcement. “Because we can’t.”

Last April, the Arkansas State Legislature passed a statewide ban on mask mandates. In August, Gov. Asa Hutchinson, a Republican, asked legislators to amend the law to allow school districts with students under the age of 12 to require masks. He said he signed the April law, in part, because cases were down at the time.

“Everything has changed now,” he said. “And yes, in hindsight I wish it had not become the law, but it is the law, and the only chance we have is either to amend it or for the courts to say it has an unconstitutional foundation.”

Legislators chose not to change the law, but a judge has temporarily blocked Arkansas from enforcing the ban.

As of Wednesday, 16 states had mandated masks in schools and eight states had banned mask mandates. Other states are leaving the decision to counties or individual school districts.

In Ohio, Gov. Mike DeWine, a Republican, said in July that he did not believe he had the authority to mandate masks in schools. At a press conference last week, he urged schools to implement their own mask requirements, at least for the next few weeks while case numbers are high.

“To all those who are making decisions right now about our schools, if you do not require masks, please, please, please think about this again,” he said.

Even in districts that have recently instituted last-minute mask mandates, often defying their states’ orders against them, some parents of children with medical needs have lost confidence in their public school systems.

When the pandemic initially shut down schools, Vanessa Perry, whose son Ryan was diagnosed with the rare autoimmune disorder Henoch-Schönlein purpura last year, opted for remote learning. This summer, she hoped that his district, Richland One in Columbia, South Carolina, would institute a mask mandate, so he could return to the classroom.

But in the weeks leading up to the school year, the district made masking optional, in compliance with the state’s ban on universal mandates. Two days before school was supposed to start, the Richland County Council defied the state and passed an emergency ordinance mandating masks in all public and private schools that serve children between the ages of 2 and 14.

But it was too late for Perry. She had already enrolled her son in a virtual program for this fall and purchased textbooks and supplies. And with the emergency ordinance’s mandate expiring on Oct. 15, she didn’t want to risk the possibility that it wouldn’t be extended, or that it might be revoked before then.

“At this point, I don’t know if I trust things to be handled correctly,” she said. “You have always viewed school as a safe place for children. Why aren’t we listening to scientists and the professionals?”

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