‘I can only do so much’: Families of kids with disabilities struggle with distance learning

Eden Prairie resident Sarah Sirek works on distance learning assignments while her private autism school is closed due to the COVID-19 pandemic. Mom Melissa Sirek said Sarah works best with her Barbie dolls learning alongside her. Courtesy of Melissa Sirek

By the seventh day of distance learning, Simone Lott could have used a day of rest.

When Minnesota schools closed in mid-March, Lott found herself teaching her four children, including 7-year-old son Samael, who has cerebral palsy. That was on top of her usual responsibilities running a household as a single parent and her full-time job as a social worker.

She already felt behind at work after she was bedridden for a frightening two weeks in March with what her doctor said was likely COVID-19, though she was never tested.

Nothing was easy that first week in her new role as mom playing teacher, and Lott doesn’t expect that to change.

“I think what people forget is that taking care of special needs kids is not just like taking care of any regular kid. I’m trying to manage that and the environment with all the stress going on every single day,” she said. “I’m a mom. I’m not a teacher.” 

With Minnesota schools closed for nearly a month in hopes of slowing the spread of COVID-19, educators and families of children with disabilities are scrambling to navigate uncharted territory: providing remote special education instruction and services to students with complex needs.

Like Lott, many are struggling to adjust to a new reality, one where they must juggle their roles as parents with the duties of teachers, therapists and full-time caretakers. Parents say they feel educators are doing their best to support families’ efforts, but managing specialized services and school work at home is a stressful, tiring undertaking. They worry that without in-person instruction and services, their children will lose hard-earned progress.

Special education instructors also face a monumental change in creating and administering individual distance learning plans, sometimes for as many as 25 students. These plans have to respect each child’s abilities, needs, resources at home and legal right to an appropriate education — a delicate balance teachers can only achieve by working closely with families and constantly reevaluating each plan, experts say.

“[Distance learning] is not a good fit for every student, which I think everyone across the state is finding for students with disabilities,” said Kelly Dietrich, director of special education for Indigo Education, a team of special education administrators who work in 60 Minnesota charter schools. “You really can’t anticipate how a student is going to function in distance learning until they get in there and try it, and I think that’s particularly true for our students with disabilities.”

Under federal and state law, school districts have to provide an education for students with disabilities, tailored to their needs. More than 148,000 Minnesota public school students — about 16% of the total student population — receive special education services.

Students who qualify for special education have a wide range of abilities and use a variety of services — like the support of an all-day one-on-one aide, extra time on exams or physical, occupational or speech therapies. The approach is all laid out in carefully crafted plans called Individual Education Programs, or IEPs. 

Abrupt school closures due to the COVID-19 pandemic and the absence of guidance from the federal government upended special education in some parts of the United States. Some districts initially canceled some special education services or online learning altogether over fears that virtual lessons wouldn’t be accessible for students with disabilities.

National policymakers have raised concerns that delivering special education services remotely will cause financial strain for school districts. Minnesota Reps. Angie Craig and Pete Stauber, and California Rep. Jared Huffman sent a letter to House leadership in late March, asking them to include more money for kids with disabilities in a federal aid package.

An unprecedented challenge

Educators and parents say the transition in Minnesota has been smoother than in other parts of the country because of the eight-day planning period ordered by Gov. Tim Walz before schools started distance learning. Still, special education teachers faced an unprecedented challenge in preparing both students and their families for at least a month of remote instruction — and signs point to distance learning through the end of the year.

“[Special education instructors] are having to create not just a single distance learning plan, but they’re having to create 20 or 25 distance learning plans and also make sure they’re connecting daily with the students,” said Elyse Farnsworth, a lecturer with the University of Minnesota School Psychology Program. “It becomes a logistical challenge. I have concerns about burnout for teachers.”

These distance learning plans have to balance each student’s academic and developmental needs and their IEP with their family’s resources and ability to help. Scott Masten is a special education director for the Lake Agassiz Education Cooperative, which provides special education support to schools near Detroit Lakes. Masten said teachers in the cooperative’s five member districts are getting creative to deliver lessons that work for all students.

Masten said instruction might take place online, over the phone or through physical materials like worksheets, depending on the child. A number of students served by the cooperative can’t do their schoolwork during typical school hours because their parents are at work, so teachers send them videos with the day’s lessons.

Instructors also schedule check-ins with students as often as they need, which could mean a once-daily video or phone call for some children, or a call every hour for others, Masten said.

“You can’t learn how to be an online teacher in eight days.”

Adding to the challenge, research on K-12 special education and distance and virtual learning is nearly nonexistent, and there are no widely agreed-upon best practices to guide special education teachers tasked with moving instruction and services online. The Minnesota Department of Education and professional groups have published guidance since schools closed, however.

“We’ve spent the last 40, 50 years fine-tuning best practices for our face-to-face programs, but that doesn’t equate to distance learning in any way,” Dietrich said. “You can’t learn how to be an online teacher in eight days.”

Many services, like speech therapy or targeted academic instruction, can be delivered remotely, said Dietrich, who has two decades of experience in special education distance learning. But others don’t easily translate to virtual environments, including programs for students with visual or hearing impairments — or the support Plymouth parent Alyssa Siebert’s sons receive to work on behavioral and emotional issues.

Plymouth parent Alyssa Siebert worries that two of her sons, both of whom have IEPs, might regress during distance learning while schools are closed due to the COVID-19 pandemic. Courtesy of Alyssa Siebert

Her oldest son, a second-grader, used to experience outbursts so intense that he would sometimes flee from school. He spends most of his day in general education classrooms now, where instructors help him practice coping strategies when difficult situations arise, like a friend taking his toy.

Today he recovers from setbacks in a matter of minutes, Siebert said. He was just starting to enjoy school and make friends before the pandemic, and she worries he’ll regress because he can’t practice social skills with his peers.

“It’s frustrating because we worked really hard to get him to the place where he was at school, and he was doing really well, and now I feel like we’re going to have a setback,” she said. “But obviously, it’s out of people’s control.”

Zimmerman parent Elizabeth Marsh said her family started distance learning assignments a day early because they suspected schoolwork might be challenging for fourth-grader Allie, who was suddenly without her usual routine, instructors or the support of the aide who works with her all day at school.

After 90 minutes, Allie, who has cognitive and physical disabilities, still hadn’t finished half her special education assignments or any work from her general education classes, so her teachers agreed to cut down on her schoolwork, Marsh said. The lightened workload and frequent communication with Allie’s teachers reduced their stress, but Marsh said academic work at home can still be tricky.

“I do think there’s kind of a learning curve with having a child with special needs because you don’t know how they perform normally in the classroom,” Marsh said. “Does she usually ask for this much help? Does she normally need to be prompted? Those are things I don’t know because I’m not there with her during the day.”

Different districts, different results

While many parents say they’re happy with how schools are managing special education services during distance learning, parent Ashley Hertle said she has been frustrated by a lack of support from Southland School District in southern Minnesota.

This winter, Hertle was already worried that preschooler Izzy, who has an IEP, would struggle in kindergarten next year because she hadn’t yet mastered fundamental skills like counting and reciting the alphabet. Her concerns have only intensified during distance learning.

When schools first closed under Walz’s executive order, the district tried to drop the services laid out in Izzy’s IEP altogether, Hertle said. Doing so would violate the law.

She said the district has since agreed to continue Izzy’s services, but the family hasn’t received any help from teachers when they struggle to complete the assigned schoolwork, instead hearing repeatedly that the family shouldn’t push academics during the pandemic.

Austin parent Ashley Hertle’s four children gather for a virtual morning meeting with one of their classes while schools are closed because of the COVID-19 pandemic. Courtesy of Ashley Hertle

Although Hertle is already working closely with the new district Izzy will attend next year, she’s concerned that falling behind before kindergarten will make school a stressful place for her daughter.

“I feel bad because she has to fail before [the new district] can help,” Hertle said. “I don’t want Izzy to have to hate school, but I fear that’s what’s going to happen because we have to allow her to fail so they can pick the pieces up and figure out how to put them together.”

In an email to Minnesota Reformer, Southland Superintendent Scott Hall said he doesn’t believe Hertle’s account is accurate. The district notified parents that they would carry out IEPs and instruction to the fullest extent possible, consistent with guidance from the state and federal government, Hall said in the email. Students receiving special education services have individualized distance learning plans, and the district hasn’t received any complaints from parents about IEPs and distance learning, he said.

Hertle said she has been impressed with the school her fourth-grade son Kevin, who also has an IEP, attends in the Austin public school district. Before schools closed under Walz’s executive order, teachers spent two days preparing students for distance learning by explaining the upcoming changes and going over work they’d do at home, Hertle said.

The next day, his two favorite teachers dropped off a backpack full of supplies like dry erase markers, snacks and a binder stuffed with color-coded worksheets and resources covered in teachers’ notes and superhero stickers they know Kevin loves, Hertle said. They’ve been flexible yet rigorous in working toward his academic and developmental goals, checking in frequently to reevaluate his distance learning plan.

For now, Hertle is using some of Kevin’s materials to work with Izzy in hopes of maintaining her skills while schools are closed.

“At the end of the day, I’m just a mom,” she said. “I can only do so much.”

Fear of losing ground

Regression and learning loss will be a concern for all students when schools reopen, not just students in special education, said Farnsworth, the University of Minnesota lecturer.

School closures because of the pandemic could worsen educational disparities, researchers say, as low-income students and others without access to extra support at home are at higher risk of being left behind by distance learning.

Still, the closures affect all children, so educators should be prepared in advance to provide additional help, Farnsworth said.

“This time is really going to put a magnifying glass on the inequities in our system,” she said. “Families are doing the best they can right now, but that’s just the reality of our system as a whole.”

No one knows that more than Lott, the single mom juggling her job as a social worker while teaching four children, including son Samael.

In the first week of distance learning, assignments for Samael that sounded simple — like drawing a picture or reading a few pages of a book — took at least half an hour with both mother and son out of their element. Just finding the tablet apps for his schoolwork was an ordeal; after hours of downloading, searching and clicking, the programs still eluded Lott.

Even when Samael completed assignments, Lott still felt uncertain. She doesn’t know how he typically acts at school. Should he be repeating everything she says? How much information is he retaining? She worried he might regress after missing at least six weeks of normal instruction while schools are closed.

There was also the matter of his various therapies: music, occupational, physical, speech. Only two providers had contacted the family about moving his usual sessions online, Lott said, and the prospect of coordinating all these services at home felt too overwhelming to even consider.

Plus, Lott has her own job as a social worker. During her kids’ first week of distance learning, she worked whenever she could — late at night, or in few-minute blocks throughout the day when Samael was busy.

“I just try to make the 24 hours count the best way I know how,” she said.