Parents of students with disabilities in Volusia and Flagler counties are acting as teachers, paraprofessionals, therapists and behavior specialists during the coronavirus — and they’re quickly burning out.
DeLand mom Malika Simmons couldn’t believe her eyes when she received the schoolwork for her 12-year-old son to do at home during the coronavirus pandemic.
Her son Eli Simmons, who attends River Springs Middle School, has autism spectrum disorder and severe learning disabilities. He usually works with a team of four professionals each day at school, and he’s still learning his letters and numbers. But the packet of work they received was filled with lessons on how to write a check and how to identify different angles — things that are miles beyond Eli’s ability.
[READ MORE: Coronavirus presents learning curve for Volusia students]
In those first few weeks of remote learning back in March and April, Simmons hadn’t heard much from his teacher and one-on-one paraprofessional, so she scoured Walmart for learning games that she couldn’t really afford. She worked on his number recognition and handwriting, in between trying to keep him from literally pulling up the carpet. Most days she has to bribe him just to sit still.
“It’s been hell,” she said.
Like all Florida families with school-aged children, Simmons has just been trying to keep her head above water. For weeks students have been forced into new forms of learning by the coronavirus pandemic. Students never came back to school after Spring Break as the number of confirmed positive cases of COVID-19 in the state crept higher and higher. Distance learning continues in Volusia and Flagler counties until the end of May.
But unlike their peers, thousands of students with disabilities in Volusia and Flagler counties who receive additional support and therapy at school sites may be missing out as schools have pivoted to educate at a distance.
Behavioral therapy, occupational therapy, speech therapy, physical therapy, the attention of paraprofessionals and intervention teachers and support facilitation teachers — it all becomes the parent’s responsibility. When those services can be offered virtually, parents must still facilitate the meetings, supervise, and try to schedule it all in. Now, families are starting to wonder how educators will make up the lost ground in the fall.
[AUTISM IN SCHOOLS: Volusia ’no man’s land’ of autism education]
[AUTISM IN SCHOOLS: Baker Acts soar for autistic students in Volusia County]
Heather Dorries is a stay-at-home mom in Flagler County with three kids with special needs, ranging from autism spectrum disorder, to attention deficit hyperactivity disorder, to physical impairments. It was so difficult to keep up with their ever-changing, often conflicting schedules, she decided to temporarily ask the school to suspend their support therapies, and effectively forfeit their right to make up their missed services when school returns — a move she worries will disrupt their development, but one she felt she had to make.
“I’m having to sit back and decide, is it worth it? What is more important at this point? These therapies or for them to complete school work?” she said. “There just aren’t enough hours in the day for me. You’re just one person.”
Learning to adjust
As the coronavirus increasingly spread across the country, districts took different approaches to learning. Some decided to postpone school until it could be in person. Others created material with their lowest-performing students in mind. Others decided not to use virtual methods at all.
In Volusia and Flagler counties, like most Florida districts, the plan has been to forge ahead with materials in a new format. The district provided plans in Volusia County, and teachers were responsible for setting up plans in Flagler County.
But in both cases, those plans came together in a matter of weeks. In Flagler County, all of the instruction is virtual. In Volusia County, families without access to technology or the internet had the option to get paper packets of instructional materials, but they’re generalized. The online materials allow for more specialized instruction.
[READ MORE: Coronavirus changes education ’forever’ in Volusia, Flagler counties]
Usually, developing effective, comprehensive virtual school programs takes much more time. One expert said he hates to call the current system virtual learning at all, opting instead for a more specific term: “emergency remote learning.”
Liz Kolb, a professor of education technologies and teacher education at the University of Michigan, told USA Today that online learning and virtual instruction can increase gaps in equity. And learning to bridge those gaps takes time.
“Most virtual schools are able to make these accommodations, but they have had years to put these supports in place,” she said. “Traditional face-to-face schools are aware they need to do this, but they may still be working on the ‘how.’”
That’s what Katie Kelly, a civil rights attorney from Community Legal Services of Mid-Florida, has seen with her clients. As the Volusia and Flagler counties school districts try to provide services virtually or prep parents on how to do it in the meantime, Kelly said the resulting system isn’t fair for families who are entitled under federal law to a free, equitable education.
“None of this is free or appropriate if you’re having to do the work of a teacher,” Kelly said. “And none of this is free or appropriate if you’re having to educate your child by yourself.”
The directors of exceptional student education in Volusia and Flagler counties both explained that they did not expect significant disruptions in the services they were providing to students and families. Some evaluations must be postponed, some services modified, but overall they expected to rise to the new challenges caused by the pandemic.
“We do not expect the parents to replace teachers or related service providers, but we do want and need to partner with them,” said Kim Gilliland, Volusia County’s director. “These unprecedented times have changed the look of educational services, but it is our goal to ensure that it does not stop the students from learning.”
But for the parents who spoke to The News-Journal, that’s exactly what they’ve experienced.
Pressure on parents
Paige Auborn, 26, was a little nervous when she found out schools were going to close. Anyone would be, with nine kids between the ages of 2 and 20, five of whom are on the autism spectrum. All of the children are adopted, six by her mother and three by her and they all live under one roof.
As a paraprofessional and after years of experience working with foster children with special needs, she thought she would be well-suited for educating them all at home.
But the first challenge arose when her immunocompromised mother was feeling ill and had to stay in another location, lest she risk catching or spreading the coronavirus. She ended up staying away even after she got better because of all the therapists and specialists coming in and out of the house. More recently, she’s starting to come back to the house, but even with an extra adult around it’s difficult to keep so many kids at different levels on track academically.
Weeks of distance learning have come with a couple of meltdowns — one of which was so volatile the family had no choice but to call law enforcement, who took the child for an involuntary psychological examination under the Baker Act. Now, Auborn has tried to adopt a more relaxed attitude toward their schooling. Between virtual visits with therapists, printed and digital materials spanning multiple grades and the regular work involved with running a huge household, following the schools’ instructions to the letter is not a priority for their family.
“I don’t have a college degree in teaching and overnight I became a VPK, kindergarten, third, fourth, fifth, sixth and seventh grade teacher,” she said, plus a special education teacher for students of varying abilities. “If I can’t get it all completed, if they’re trying their hardest, that’s the best we can do right now.”
Hospice nurse Michelle Sammons in Flagler County has four kids at home, three of whom receive special education services from their schools. Between them, she counted 14 teachers or therapists who normally work with them. Now, she’s replacing them all.
“I worry a lot about them because they’re already behind. How they’re going to get caught up? I don’t know,” Sammons said. “It’s really been a challenge.”
And Heather Dorries, in Flagler County, said she had to cut out her children’s school-provided therapies and the amount of school work they complete in a day. She worries about how it will affect them, but she feels like she has no other choice.
“There are days when it has been OK,” she said, “and there’s been some days where I want to just go to bed at 4 p.m. and cry myself to sleep.”
A growing suspicion
For Simmons, it’s not just that it’s difficult to keep up with her son’s therapies and coursework. She must also contend with the growing suspicion that her son’s current difficulties weren’t created by the pandemic. If her son’s school couldn’t send home appropriate work for him, is it because they didn’t have it to begin with? If it’s so hard for her, his mother, to get him to focus during the day, what incentive do his teachers have to make sure he’s not only behaving but learning?
“I think there’s kind of a bigger problem here that now we’re really seeing what the instruction for some of our significantly disabled kids is,” Kelly said.
After multiple requests from Simmons and Kelly, who represents their family, they say the work Eli is able to do with the printed materials is still not comparable to what he’s supposed to get in a classroom. He’s still working out of books Simmons bought at Walmart. And he’s still tearing up the carpet at home.
Kelly said schools are required to offer remediation for time or services lost. Gilliland explained that based on federal guidance, the teams who create the individualized education plans for students with special needs will make those determinations as well.
“No plan is ever foolproof,” Gilliland said, “but we are doing our best.”
Distance learning will continue in both districts through the end of May.