Honokowai resident Rachel Steven said Hawaii’s mandatory stay-at-home orders in response to the COVID-19 pandemic have turned her and her autistic son’s world upside down.
“This period could set my son back years,” she said.
Six-year-old Hunter Steven is a kindergarten student with severe autism and attention deficit hyperactivity disorder who attends King Kamehameha III Elementary School in Lahaina. Until public school campuses were closed in late March, he was receiving one-on-one services and was able to utilize specialized therapy tools including platform swings and indoor gym equipment.
Denied his usual support system by current circumstances, Hunter’s education has been substantially affected, and his mom — like many parents of special-needs children — is at wits’ end.
Lyndee Sprenger, a mother of twin 8-year-old boys with autism who attend the same school as Hunter, is not having it.
“You hear people saying, ‘Just stay at home; stop being a big baby. … Hunker down and stay in your home and take it easy with all this extra time that we have.’ And parents with kids with special needs just want to punch those people in the face,” Sprenger said.
Both women say it’s unrealistic to expect parents of these students to adhere to their individual education programs (IEP) at home via remote learning. The IEPs are developed through the Department of Education to ensure children with an identified disability receive proper services. In Maui County more than 2,000 students in grades K to 12 were in DOE special-education programs at the start of the 2019-2020 school year.
“We are not finding success in distance learning,” Steven said.
“When you’re talking about a special-needs population, you are really ruling out a huge majority of the children that are incapable of learning that way,” Sprenger said.
In-person services for special-needs students are not being provided due to COVID-19 concerns, but DOE officials say schools will continue to communicate with parents through the duration of campus closures, which were extended through May 28, the end of the academic year. Services via “telepractice” are being provided on a case-by-case basis when appropriate, the DOE said, but when not feasible, “related services are provided to the greatest extent possible via other distance learning supports.”
“When school resumes in its traditional manner, Individualized Education Program and Section 504 teams will meet to determine any loss of skills as a result of the extended school closure and the child’s need for compensatory education.” (Section 504 refers to the federal statute that requires equal access to education for students with disabilities.)
In the meantime, since she wasn’t allowed to borrow occupational therapy equipment from her son’s school, Steven took it upon herself to purchase a climbing ladder, swinging rope, plastic rings, trapeze bar and “crash pad” for sensory integration. She hopes that having the gear at home will help Hunter stay on track, but fears he will have regressed come next school year.
And she’s not alone.
Desirea Peterson, 31, of Kapaa, Kauai, is the mother of two children with special needs who attend Kapaa Elementary and Middle School. Her youngest has autism, and Peterson said his schoolwork is “pretty much nonexistent just for that reason.”
Prior to the interruption in services, her son had made substantial progress this year, Peterson said, and she’s concerned with how these past weeks away from school will affect him when he returns.
“When he started kindergarten last year, it took the whole school year just to get him acclimated to being in school. He would run away from the class and hide and act out violently toward himself because he couldn’t understand what he was supposed to be doing.
“This year he had a complete 180. He was being integrated into his regular class more, and he could sit more. And I’m just worried that being out of school for so many months, how it is going to be when he goes back? Is he going to revert back?” she said.
Kevin Abella is a board-certified behavior analyst on Hawaii island, serving families in the home and outside of school through his company Big Island Behavior Interventions, which has seen an 80% cutback in services provided. He said regression is likely without ongoing programs.
“It’s definitely something we expect, especially since some of our families haven’t had services for a good month now. It’s very much expected that we will see some sort of regression,” he said.
Naomi Ka‘ae Tachera is a special-education teacher at Laupahoehoe Community Public Charter School on Hawaii island and also the mother of special- needs children. She recommends parents receive training to deal with behavior management, if they haven’t already, and to “give themselves a break.”
“Even for myself, I’ve had to have some time for respite,” she said. “I have to make sure my kids get a break from me and I get a break from them as much as possible.”
Tachera also recommends parents adapt their methods based on how their children are responding to the current situation.
“If they need a rigid schedule, then go with that. But if it’s too much for them, relax. You want to go off how they’re responding,” she said.
Karen Gibson, a former special- education teacher, is the owner of tutoring services Brain Builders and Letting Go With Aloha on Oahu, where she coaches parents on how to work with their children’s education needs. She also recommends parents aim for “emotionally connecting with your child.”
Gibson suggests activities that are fun and educational but not necessarily so focused on academics during this time.
“Every parent has the IEP right now, and if they think the IEP is like a bible that they have to follow, then that’s going to be a challenge,” she said.
Social distancing and other COVID-19 precautions also are curtailing services to adults with disabilities. Valerie Sly, program director of Arc of Maui County, which provides at-home services and residential programs for individuals with intellectual and developmental disabilities, said they’re having to adjust as well.
The organization oversees six group homes, five on Maui and one on Molokai, and all residents have been following the stay-at-home order. That means they haven’t been able to access community-based services, and their daily outings have been canceled. Many of the residents with jobs are out of work now, too.
“We have a lot of our folks being stuck at home, not really understanding why they are stuck at home, and that makes it really challenging for our folks with behavioral issues or folks with a lot of high energy. So we are trying to be creative with our programming and making sure they’re getting enough physical exercise,” Sly said.
“We’re making sure they’re not getting too much TV time and that we are still teaching. That is the most important thing, that we are still teaching, because that is our goal … to get folks as independent as possible in whatever their goals are.”