COVID forces hard school choices for students with Down syndrome and their families
Before COVID-19, Suzy Lindeberg’s son was learning life skills and building confidence in a Stillwater schools program that helps disabled students prepare for life beyond high school. In John’s case, it meant preparing to live as an adult with Down syndrome.
The district helped connect him and another student with a local Papa John’s Pizza restaurant. They learned “everything from folding the boxes and assembling the boxes to making the pizzas to cleaning the kitchen when they were all done working,” she said. “It was a great experience.”
Then came the pandemic.
In-person learning, whether in class or out in the community, became inaccessible to John. Opportunities to learn about getting around on public transportation, going to Target or the grocery store, or making purchases on his own were lost to fears of catching the virus.
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“I would say, at a minimum, a year and a half was lost and can't be regained with the recovery that the state is telling school districts that they can offer,” said Lindeberg, who’s board chair of the Down Syndrome Association of Minnesota.
“When I really sit down and look at it, I see young adults who will be finishing transition and my heart breaks knowing they lost out on so much,” she said.
After two years of living with COVID, the pandemic has forced some of Minnesota’s youngest and oldest learners with Down syndrome to miss out on in-person education and programs vital to their progress — time that often can’t be recaptured.
In Minnesota, school districts provide transition programming for high school graduates enrolled in special education who need additional support with things like independent living skills and job seeking. But that opportunity ends at age 21.
‘Unmitigated disaster’
Minnesota legislation passed in 2021 requires public schools to assess whether students with individualized education programs have regressed or lost learning opportunities during the pandemic. They must determine appropriate services to help compensate for lost learning, and deliver them regardless of staff shortages or school closures.
Implementing the requirement, however, hasn't been easy.
“It’s really hard to generalize whether or not the school should be kind of doing more across the board,” said Dan Stewart, the legal director at the Minnesota Disability Law Center. “Parents will almost certainly say, ‘Yes, of course,’ and districts will mostly say, ‘Yes, we're doing a really good job. We're doing the best we can, given the scenario that we're in.’”
Online instruction for disabled students “has largely been not as rigorous, not as comprehensive, not as personal, not as meaningful as in-person services,” he said.
Students who can’t stay focused on screens for long periods of time, and those who need specialized in-person services or hands-on instruction have struggled with virtual learning, he added.
“For these kids, the COVID experience has been a largely unmitigated disaster because of the COVID restrictions, because of staffing problems, because of technology problems,” Stewart said.
Like Lindeberg, Carla Ratgen worries about her 19-year-old son with Down syndrome who graduated from high school during the pandemic. When he turns 21, he will age out of the transition program sponsored by Centennial schools in the northern Twin Cities suburbs.
Centennial is mask-optional unless 5 percent or more of students and staff are out with COVID. For Ratgen, that was too much risk so she moved with her son 90 minutes north to Isle, Minn., to live separately from her husband and their two younger children.
“Our son, his risk of getting a really horrible case even being vaccinated ... He got a cold a couple years ago and it went to double pneumonia. And he was almost intubated for, for just having the common cold,” she said. “The school kind of really made our decision for us when they decided that they weren't going to mask.”
Ratgen and Bailey returned to the family home in Lino Lakes, Minn., earlier this winter. With the rise of omicron, they went back to Isle, living apart from their family once again to protect Bailey from the COVID exposures his younger siblings might have at school.
She said there are no online services offered for Bailey’s transition program. For now, he has withdrawn from the program. Ratgen plans to re-enroll him when it feels safer.
Kathy Zwonitzer, director of student services in the Centennial school district, said they are not currently approved to run a comprehensive online program. Some of the training that students in the transition program receive requires in-person instruction, and some depends on their individual needs, she said, so the school year will be extended this summer for those students.
Maren Hulden, a lawyer with Mid-Minnesota Legal Aid, said she has heard from school administration about how hard it is to implement the new special education legislation with staff shortages. She hopes schools will keep looking for “creative and flexible” ways to meet students’ needs despite that, through tools like therapy services, extracurricular weekend instruction or summer programming.
“For the kids who are hit hardest by pandemic disruptions, if we don’t find creative ways to meet their needs where they’re at right now, everything is going to get harder for them in the coming months and years,” she said. “And it’s going to get harder for the adults in their lives to be able to figure out how to support them, including — and maybe especially — schools.”
Worry around the youngest learners
Lindeberg worries most about children just starting out at school and those who are graduating.
She said additional support is key at these intervals — for very young students who are developing mobility and for high school graduates preparing to live more independently.
Early learners with certain developmental disabilities depend especially on modeling and observation to learn new skills. That’s difficult to do remotely, and even in-person with mask-wearing when they can’t see full facial expressions or how someone’s mouth moves as they speak, said Dalit Spindel, a school psychologist in Rochester, N.Y.
“Kids are showing more impatience. Kids are showing less, you know, ability to read other kids,” she said.
Spindel anticipates having to teach students about how to play with others, how to take turns and be patient in the classroom.
“You think that they will learn in preschool and kindergarten, but that will carry over to fifth grade just because of the pandemic,” she said.
Ashley Olthoff’s son Oliver is in kindergarten in the Edina school district, just starting out. He also has Down syndrome.
Without extra supervision, he wanders off on his own, said Olthoff, a program manager at the Down Syndrome Association of Minnesota.
Oliver likes school. He’s friendly and full of playful energy with a gap-toothed grin. When Ashley picks him up and asks him if he had a good day, he’ll say, “Yeah, really good day!”
At the start of the school year, she said Oliver excelled with the paraprofessional assigned to help him. Then, she was reassigned to another student who needed additional help. On Oliver’s first day without her, Ashley said he left his classroom multiple times.
She appreciates the special education programming in her district, but she is concerned about availability of paraprofessionals to help Oliver stay in class, stay focused and learn.
“It's like a triage situation of kids not getting the support that they need to access the curriculum, to access the building safely,” she said.
Jeff Jorgenson, the district’s director of student support services, said that filling open staff positions has been a struggle.
“Edina has a strong foundation of staff, teachers and paras with longevity with the district, which has helped us,” the director said. “But we still have open positions for special education teachers and paraprofessionals.”
Olthoff said Oliver alternates between sharing a paraprofessional with another student, and having his special education teacher who manages his classroom provide additional aid for him. For Oliver, this means switching back and forth between different aides who help him, two to three times a day.
“I think he would do so much better if it was one person, the same person every day, all day long,” she said. “I mean, he ran out of the building the other day. So it’s a safety concern.”
“For people who are limited verbally, their behavior is a form of communication,” Olthoff added. “When Oliver is frustrated or not getting his needs met, he will throw things on the floor or run from the classroom. I really believe that his behavior is telling us more about how he feels in those frustrating situations than he is able to verbally tell us.”
She wonders how remote learning and pandemic disruptions in preschool and kindergarten will affect Oliver in the coming years.
“It’s going to impact and affect everything.”