Bella has a condition known as GM3 Sythase Deficiency, a disorder that causes her body to be unable to make the enzyme GM3, which is important for neurological development. As a result, Bella has epilepsy, hypotonia (or low muscle tone), cortical visual impairment (visual impairment caused by the brain), and feeding intolerance, which makes her dependent on IV nutrition. She uses a speech-generating device to communicate, her word selection driven by the yellow joystick, which she uses to scan through options spoken quietly to her in a small speaker in her adaptive chair’s headrest.
Before Bella’s school closed, she used her talker so much that she would drain the battery during the school day, chatting straight through her hour-long speech therapy sessions. However, since remote learning started, she began talking less and less, becoming increasingly withdrawn. Bella’s palliative care team and her speech therapist noted her neurological decline, positing that it may have been related to her not going to school or socializing with others. This is why, despite her concerns about how Bella would manage Covid-19, Bella has returned to her Holmes County, Ohio school. “I know the risks are huge, but for us personally, it came down to quality of life,” Yoder says.
Bella is one of hundreds of thousands of medically complex children whose parents are weighing the impossible decision of whether to send their children back to school. There are varying definitions of medical complexity, but the term applies to about two percent of the pediatric population, or approximately 3 million children, explains Dr. Nathaniel Beers, pediatrician at Children’s National Hospital in Washington, D.C. “Generally you are talking about children who are dependent on technology,” such as a ventilator or a feeding tube, “or they have multiple systems involved with whatever condition they have,” he says. Oftentimes, this will involve multiple diagnoses, encompassing numerous physical or developmental delays; medically complex children also tend to be more at risk of complications from illness, including COVID-19.
During so-called “normal” times, parents of medically complex children are typically heavily reliant on school districts to provide educational and health services. Under the Individuals with Disabilities Education Act (IDEA), children with disabilities are legally entitled to free educational services that are tailored to their own needs, from physical therapy to speech therapy to an in-class aide or assistant. Low-income families are particularly reliant on these services, and low-income students and students of color are disproportionately represented in the special education community.
With the arrival of Covid-19 lockdowns in March, however, families were stunned to find that their children’s services were now entirely remote or, in many cases, suspended altogether. “Probably close to 100% of kids with special education needs have had some disruption to their IEPs [individualized education plans],” says Beers.
Due to the relatively short duration of the pandemic, there’s a paucity of research on how special needs students have fared during it. Yet one July 2020 study from the National Institute for Early Education Research at the Rutgers Graduate School of Education, which looked at 1,000 preschool-age children across the country, found that only 37% of children with IEPs were receiving full services, while nearly 25% of these students received no services at all — despite federal law requiring otherwise.
As a result of the disruption in services, parents in a number of states have been pursuing legal action against various school districts across the country. One lawsuit brought by more than 200 plaintiffs from 10 states against defendants across the country, including New York City’s Department of Education, is demanding that all parents be compensated financially for loss of services during the pandemic, and that all in-person services resume immediately. (In a statement, the NYC DOE said, “This summer, we are offering in-person related services for our students with disabilities. We are acting in the best interests of our students while following health guidance and will review the lawsuit.”)
Another lawsuit, against the Dept. of Education in Hawaii, is calling for the school district to provide compensatory services to students who have lost crucial developmental milestones and skills during the pandemic, which attorney Keith Peck says the district has not yet agreed to do. “To this date, even just two days ago, I had a conference in federal court with the judge and the DOE’s attorney, and the DOE was like, ‘I don’t know, there might be a plan,’” Peck told Rolling Stone in mid-August. “Even their attorney has no clue whether there’s any kind of plan at all.” (The Hawaii D.O.E. did not respond to requests for comment.)
Even those children who attend schools that have continued to provide full distance services are struggling to have their needs met. Allison Buchner’s daughter Sammie has just started sixth grade in a Los Angeles inclusion charter school, in which children with identified disabilities and children who are typically developing all learn in the same classroom. Sammie has a genetic disorder known as CACNAA1A, which causes symptoms that present much like cerebral palsy. Sammie receives significant support in order to thrive in her classroom. While Buchner says that this school has done an exceptional job of extending their philosophy, We Educate All Kids, to virtual learning, there are some things, like one-to-one support, that cannot be translated at a distance.
“You can’t take a child who is thriving and succeeding in a general education classroom with the support of a one-to-one aide, an occupational therapist, a physical therapist, and speech therapist and say, ‘Here’s a computer, go learn.’ You can’t. It’s not fair,” says Buchner. Buchner explains that in order to accommodate Sammie’s needs, they have had to hire in-home assistance out of pocket. “Not only does she need a person in the room, but by definition she needs a person within six feet of her,’ she says. “There’s no social distancing when you require hands-on support throughout your day.” Still, Sammie is missing out on therapies that she would be receiving in school, like physical therapy, which is difficult to do at home without the in-person focused support of a therapist while balancing all of the demands of Sammie’s education.
In addition to missing some of the therapy services on Sammie’s individualized education plan (IEP), like many parents, Buchner is worried about the social impact for Sammie of being isolated from friends. “If you are looking at her as a whole child there are huge areas that she’s missing out on in social and emotional development, because we’re not interacting with friends, she doesn’t have peer models during the day.”
As a result of the disruption in services, many parents have reported that their children have regressed significantly, losing precious milestones and abilities they had, in many cases, worked for months or years to achieve. “When she has the appropriate services in place, we sometimes forget that she has any difference or any special needs,” Brandis Goodman says of her fifth-grader, Raya. Raya is tube fed through a surgically-placed abdominal feeding tube due to GERD, a gastrointestinal chronic pain disease, and severe allergies. She also has sensory processing disorder and ADHD. “She is a kid that, to meet her, you’d never guess that she struggles with anything. She’s very outgoing and bubbly and happy.”
As Raya’s services, including occupational therapy and habilitation, were disrupted due to the pandemic, however, their efficacy became clearer. Lately Raya has been having trouble expressing her needs. Recently, upon starting a swim program, she struggled with her nervousness and spent the first three days outside the pool crying. Goodman explains that she now sees that Raya’s successes were proof that she was receiving the support that she needed. “And it is really exciting to realize that those accommodations are working,” she says. “It is just unfortunate that sometimes having those services interrupted is what reminds us how well they work.”
Concerns about regression are legitimate, says Wanda J. Blanchett, Ph.D., dean of the Graduate School of Education and a distinguished professor at Rutgers University. “The research shows the longer the period of time typically developing children are not engaged, the likelier the regression,” she says. “And when you start to think about students with significant developmental disabilities, it’s conceivable the more they’re without adequate instruction, the greater the likelihood of regression.”
This is to say nothing about the impact that the lack of services has had on parents of special needs children and their own welfare and mental health. Though research shows that 46% of parents of typically developing children report having “high” stress during the pandemic, that stress is likely exacerbated for parents of special needs children, who often have to balance being teachers, caregivers, employees, advocates, and therapy providers all in one. “They have told me they feel even more isolated [than they did before the pandemic],” says Amy Brin, executive director and CEO of the Child Neurology Foundation. “They feel they have to jam the system even more to get the basic needs their children serve.”
Yet parents must balance their concerns about regression and their own mental health with the fact that, depending on their conditions, their children may be at heightened risk for complications from Covid-19. Nearly all families must navigate this tension when deciding whether to send their children back to school, but for parents of medically fragile children, the decision tends to be even more complex. Buchner knows some of Sammie’s peers are getting together, but their family is stricter about social distancing and preventing exposure in order to protect Sammie. But when asked about her biggest concerns about the possibility of going back to school, Buchner says that she worries about Sammie’s ability to nurture meaningful friendships in an environment of significantly reduced social exposure. “Obviously my biggest worry is that we all get Covid,” she says. “But, for me, I’m worried about the friendship piece.” This is particularly challenging in Sammie’s case, because one of her closest friends died suddenly in December. “She was already going be going into sixth grade with that,” she says. “I worry about the social gap growing.”
Deciding whether or not to go back to school is a highly individualized decision that takes into account many different factors, such as area infection rates, children’s rates of regression, and the risk burdens of other members of the household. For Bella, the risks of her contracting Covid-19 are significant: Bella was hospitalized several years ago with a different strain of coronavirus and human metapneumovirus. “It was the most sick she has ever been, and she became septic and went into respiratory distress,” says Yoder. “I will never forget the image of her struggling to breathe and how scared I was in that moment that we were going to lose her.” She is susceptible to life-threatening reactions to familiar illnesses, but due to highly variable reactions to COVID-19 in even healthy populations, there is no way to know how she might respond to this specific virus.
However, Yoder says that the reality is that Bella is at high risk at all times due to her medical complexities. Brin, the CEO of the Child Neurology Foundation, estimates that while nearly three-fourths of parents of medically complex children are doing remote learning in some form this year, some parents, like Yoder, “are OK with taking on that risk of infection. What they’re not OK with is taking on the risk of regression because of the lack of in-person services.”
In some ways, deciding whether or not to enroll a child in in-person school this year, if it is even offered, is an extension of a familiarly impossible conundrum for parents of medically complex children. Such families are well-versed in the process of carrying out elaborate risk-benefit analyses, weighing imperfect solutions to their children’s intricate social, medical, and educational needs. Making such decisions during a pandemic “is that special-needs mom calculus on steroids: you don’t have perfect information, half the world is telling you to do one thing, half the world is telling you to do this other thing,” says Buechner. “And either way you go, there’s a risk, and you’re not addressing the whole child. It’s just impossible.”
Stephanie McDowell, of Setauket, Long Island, has a son, Teddy, with a number of medical and developmental challenges, whom she has been sending to summer school full-time. She says that distance learning was a complete disaster for him, because he could not concentrate at home. “He basically didn’t have any formal education or services from March to July,” says McDowell. So, when in-person summer school became an option, McDowell leapt at the opportunity. Teddy attended full-time, although the day was shortened, and McDowell felt it worked well from a safety perspective; kids and staff who weren’t exempt wore masks, and there weren’t any Covid cases in the school, she says.
However, a lot of factors went into McDowell’s decision, not just Teddy’s inability to learn in a home setting. Teddy is in a very small class with 12 students, one teacher, and one aide. The bus he rides to school is small as well. Teddy also wears a mask willingly. Additionally, the numbers where they live in Long Island are currently low. If these factors were different, McDowell says, “my calculus would be different.”
Simon, 15, of North Ogden, Utah, will not be going back to school in person this fall. His mother, Valorie Dodart, offers, by way of background, “His main diagnosis is Trisomy 11q Monosomy 20p. Under that umbrella is quadriplegia, epilepsy, dysautonomia, deaf/blind, GERD, dysmotility.” She then adds, playfully, “Is that enough, or do you want them all?” Like many children with medical complexity, Simon is unable to social distance without compromising his well-being and education; he is completely dependent on others to support with him physically for his care and his engagement in learning. “Simon is legally deaf and blind, and a tactile learner,” Dodart explains. ”We would need to trust others to keep the environment sanitized and don’t think current plans are adequate.” Furthermore, the protections that might work for other children could be not only a challenge for Simon, but a risk. “Simon won’t keep a mask on and aides would be replacing a mask all day and touching his face,” says Dodart.
One of Simon’s classmates is is also not returning to school in person, and there was some discussion about doing a few hours of school together from home. Initially even that seemed to be too big of a risk. “My knee-jerk reaction was not to do it,” says Dodart. “It has always been important to give Simon an enriched life, but we also vigilantly protect his health. This pandemic caused us to tighten up even more than usual.” However, through recent discussions with other parents of children with medical complexity, Dodart says that she is also reconsidering a plan to provide regular peer interaction for Simon. “The [other parents] talking about quality of life being a factor in their decision helped me see that we had to start easing ourselves into “living” a little more than we have been.” Then, she adds, “I always learn best from other parents.”
As parents wrestle with the decision of whether to send their children back to school, and many school districts pivot to remote learning altogether, experts warn that school districts must not leave special needs children, and medically complex children in particular, behind. With these concerns in mind, some school districts have allowed young children and special needs children to come back to school for in-person learning while making school remote for other students; most, however, have yet to come up with such plans. “We have to figure out a way to get services to children who need them most, because their lives may be forever altered by not having them at this critically important time,” says Blanchett. “We’ve figured out a lot of things in this pandemic. So it seems to me we could figure this out.”