Just weeks ago, special education students across America had one-on-one aides, physical and speech therapy and counseling in school. Then came the coronavirus outbreak, and schools closed.
While many of America's children are working through take-home packets or taking classes online, some families of special education students are still struggling to line up learning for their children.
“Even though Mom and Dad may be home, they are not special education teachers, speech or language pathologists or occupational therapists,” said Peg Kinsell, policy director for the Statewide Parent Advocacy Network, a New Jersey group that supports families of children with disabilities.
William Martinez has been helping his son Angel, 13, a New Jersey freshman with autism, get through the school day.
His teachers and therapists gave packets of work for him to do at home. For his weekly occupational therapy, he was assigned puzzles, coloring and 10 minutes a day of exercise. For his twice-weekly speech therapy, he was instructed to read sentences aloud, record his voice and send the recordings for evaluation.
Angel’s case manager also reached out to the Prospect Park, New Jersey, family to see if he needed a Chromebook to use at home and if he could connect to Wi-Fi. Later, his speech therapist reached out to set up a virtual meeting using the Zoom app.
“It’s not that easy when Angel is not used to doing it,” Martinez said. “I have to be on top of it. I have to make sure my child knows how to get on. And once he does, I stay to make sure he’s participating and not just looking at the screen.
“We tell him: You still have to get work done. You are still in school. My son understands that, but I do see some regression because he’s not in a set classroom routine.”
While schools are closed for the coronavirus outbreak, districts still must provide an appropriate education “to the greatest extent possible” for students with disabilities, according to federal guidance. They cannot send staff to students’ homes because of social distancing. So students are receiving a patchwork of exercises, interventions and academic work that varies across the country and even across individual cities.
As school closures stretch on, families worry their students will fall further behind. Adding to their alarm: The $2 trillion coronavirus stimulus law included a clause that allows Betsy DeVos, the U.S. secretary of education, to ask Congress to waive districts' requirements to provide certain services to special education students. The deadline for such a request is next week.
Coronavirus-era learning requires parental involvement in most cases. But for parents of students with special needs, the supervision is especially consuming.
At his middle school in Maplewood, New Jersey, Ethan Raab is a high honors student in a regular class who receives several services for cerebral palsy and global apraxia. The neuromuscular conditions affect the 13-year-old's speech, fine motor skills and gross motor skills.
At school, he has a one-on-one paraprofessional who helps him throughout the day. He also receives weekly physical therapy and speech therapy and a monthly occupational therapy consultation at school.
“I know the district is in a difficult situation, but we have been forced to provide these services for our son,” said his mother, Marian Raab, who said she was paying $200 per week for private therapy sessions via Zoom.
For physical therapy, she takes a hands-on role, listening to instructions and doing activities like handing him balls and helping him stretch. He can follow speech therapy independently, she said.
“Clearly, most parents cannot afford to do this,” she said. “And I am still losing sleep that Ethan is going to experience serious regression in his physical, gross motor and fine motor skills.”
His school-based speech and physical therapists reached out to her and indicated they were planning for teletherapy after spring break. She believes the school should have done it sooner.
“He’s not in school every day and not getting all the services he’s supposed to get,” she said. “This is a huge equity issue.”
Every day, Kym Lesch Lesch takes instruction from teachers online and guides her 16-year-old twins, Nicholas and Nathaniel, through their lessons. Three of her four sons attend private schools with special programs for children with autism. The twins require one-on-one supervision at all times.
Nicholas talks a bit, but Nathaniel cannot talk and uses an iPad and some sign language to communicate.
It’s challenging, especially because routine is very important to them. They may get upset if she does something differently from the teacher. That’s particularly true for Nathaniel, who asks for his backpack and shoes in the morning, wants to go to school and expects everything in exact order.
The lack of routine has led him to lash out, including scratching and hitting, she said.
“There’s no one to help me through that here,” said the Bloomingdale, New Jersey, mom.
“They are used to routine and structure,” Lesch added. “They have no idea why I’m not sending them to school every day.”
The school asked what supplies she needs at home and has sent her a new, touch-screen Chromebook, an iPad stand and a laminator.
“They are trying to help us do as much as we can,” she said.
Her older son, Jacob, is considered high-functioning and follows his teachers’ lessons live online. His schooling runs a half-day, and his after-school tutoring has been cut from two hours to one.
She worries about what her sons are missing and hopes they can return to school for their six-week summer sessions.
“It’s hard to do this at the level they need," Lesch said. "As a parent, it’s hard to do two hours a day. We are a family of six. There is a lot of laundry and cooking.”