Pandemic challenging disabled students, their families and their schools

Twelve-year-old Levi Scholen loved school. There were classmates to hang out with and a cooking group he enjoyed, along with the speech, physical and occupational therapy sessions that helped him manage his cerebral palsy. 

When COVID-19 hit, all of that was lost.

To bridge the gap, Centennial Middle School sent home physical therapy equipment and worksheets. Aides helped connect Levi to a virtual social group, although online life wasn’t the same as being there.

Centennial is back to in-school teaching, but masking isn’t required so it’s risky for Levi to be in the building outside of the special education classroom, creating another hurdle for a kid who didn’t need one.

The pandemic has been challenging for many students, but for disabled students and their families, there is an added, ongoing struggle as they work to ensure they get the services they’re legally entitled to under state and federal law, while mitigating risks of COVID exposure.

Levi’s mother, Kate Edin, appreciates Centennial’s efforts to help her son, though the mask-optional issue frustrates her.

“I get that it might be half and half out there,” she says of the debate over masks. “But half of them are complaining because their child is going to be uncomfortable, and the other half of us are scared that our child is going to die.”

‘It’s hard times right now’

Schools are required to meet the needs of children with disabilities under a 1975 federal law that became the Individuals with Disabilities Education Act. Last year, state lawmakers called on Minnesota schools to reassess students’ individual education plans in light of the pandemic.

Every school was required to report on assessments held this fall and winter for students who have individualized education programs, known as IEPs. 

If a school and family can’t agree on a plan, the family can file a complaint with the Minnesota Department of Education. If investigators find students are entitled to services they did not receive, the school must provide those services.

“At the end of the day, you know, a school saying, well, we don't have the staff to provide those services, or we don't have the facilities to provide those services, that's really not an excuse that's acceptable under the law,” said Daron Korte, assistant commissioner at the Minnesota Department of Education. “The services need to be provided.”

Schools and advocates have long noted the federal government had promised to pay 40 percent of the cost of special education, but hasn’t. 

Minnesota was “shortchanged” $427 million in federal IDEA funding in the 2017-18 school year, Minnesota DFL U.S. Sen. Tina Smith said in November, adding that “the difference between the costs and funding that districts have to make up in Minnesota was $724 million in 2019 and could grow to $858 million by 2023.”

COVID’s made the challenges that much more difficult.

Beyond costs, the pandemic has been exhausting for students, parents, and school staff, too, said Jodi Remsing, director of special services at Wayzata Public Schools.

“We want all of our children to learn, make great gains and for their parents to be happy,” she said. “And it’s hard times, right now.”

Rochelle Dotzenrod and her husband Jacob live in Plymouth with their 9-year-old son Liam. He’s in third grade, in the Wayzata school district. Liam has Tourette syndrome, a neurologic condition that can produce involuntary muscle movements and sounds, called tics. Like Liam, people with Tourette syndrome can have accompanying conditions, like anxiety, speech deficits and learning disabilities.

While Liam’s parents are happy the district requires masking, they’ve been concerned about his other needs. They said he’s gifted in math but struggles with reading and writing. In November, they said his speech had deteriorated and his anxiety had become overwhelming.

“And they're not seeing it at school, because at school he holds it together. But when he gets home — and this happens a lot with children, right? Like even kids without disabilities — those outbursts are exasperated,” Dotzenrod said in a November interview.

For Liam, transitioning from remote learning back to in-person learning during the pandemic has been difficult.

“He had two parents at home that were available when he had, you know, an anxiety attack, or a lot of stress. We were there to support him,” his mother said. “He's not getting support at school when he's having that stress.”

Earlier this year, Dotzenrod said Liam was so anxious, he “couldn’t get the words out.” One day, he came home from school, and when he tried to say, “‘Mom,’ he got stuck on the M. His eyes teared. It took him a few minutes to manage, “‘M– I can’t talk. I need help. Can you call Amy?’” Amy is his speech therapist.

The family got some good news recently when they came together with the district on an individualized education program they hope will make it easier for Liam to get more support services.

Pandemic disruptions have affected disabled students’ mental health, too, said Michele St. Martin, director of communications at PACER Center, a local disability advocacy organization.

“For children, and youth and young people who have a mental health need, one of the most important things is stability and predictability,” she said. “And we don't have that. You can go to school today and then tomorrow, you have to go remote.”

‘Shouldn't be something that you have to fight about’

At Levi’s house in Chisago City, he smiles easily when his mom talks to him, and when his kitten, Maple, plays with him.

His cerebral palsy affects his mobility so severely that he can’t move or communicate on his own. He’s learning how to use a new speech device that allows him to select different categories for conversation, and express himself — his needs, his wants, his thoughts — by controlling his eye movements.

Levi’s mom Kate is happy with the compensatory services Centennial district offered to Levi: 18 extra sessions of physical therapy throughout the year, extra occupational therapy, and extra speech therapy.

She said the paraprofessionals who help Levi during the day have made sure he gets enough time for PT and for academics. And when Edin decides it’s safe for Levi to leave the special education classroom and rejoin all of his peers throughout the school day, he will be able to do that.

Vava Guthrie, a parent advocate at PACER Center, says they can help parents to know what their legal rights are, and to come up with strategies to communicate with school staff about how their children are doing. 

“It’s not educators against families,” she said. “It’s all of us coming together and trying to find resolution.”

Michelle Hosfield’s son Zach is a sixth-grader at Centennial Middle School, a grade behind Levi Scholen.

Zach has Down syndrome. After school, he gets off the bus and shoots hoops with his mom in their driveway. He throws again and again, eager and undeterred by the late November cold. “Good shot!” Hosfield calls out as he lets the ball go.

Hosfield said he got really sick a couple of years ago, and was hospitalized with an infection for a month. He recovered, just as COVID hit. 

Now, Zach can’t participate fully in choir and art with all his peers, as he used to. He spends his days in the special education classroom, with a limited number of other students who, like him, are less able to risk COVID exposure.

Hosfield said Zach’s personality has changed, in response to his hospitalization before the pandemic, and the isolation he’s endured throughout it. 

“At home, he'll just try to leave the room where others are and go off by himself.  He used to read full sentences. He hasn’t done that in a while. He’s been going to therapy.”

Zach was once social and active, swimming and playing baseball, she said. Now, he doesn’t understand why he can’t freely play with others, why he needs to pull his mask up over his nose or sanitize his hands. He needs frequent reminders from adults.

Hosfield has sent numerous emails to school administration. “It's been really difficult,” she said in November. “I feel like it shouldn't be something that you have to fight about… It should be granted, and people should bend over backwards to allow kids to have the equal education that other children have freely, without having to argue about it.”

A couple of months later, Hosfield said not much has changed. She’s still worried about Zach’s exposure to COVID. And she said school administration told her Zach did not need extra support services now, because he appears to be meeting goals this year, and he had access to part-time day care last year.

“He did not gain the skills he should have,” Hosfield said. “I just didn’t know how I would even prove to them in a meeting that he’s lost ground. It felt like a large group of people against just me.”

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