LANSING, Mich. (AP) - Chris Hagler functions at the kindergarten level, is non-verbal and wheelchair bound.
He used to spend his days learning from a special education teacher, interacting with peers and working with speech, physical and occupational therapists.
The 8-year-old’s moods worsened and his distractions grew after Gardner International Magnet School closed in March due to the coronavirus outbreak, according to his father, Brian Hagler. Chris eventually calmed after a few weeks, but Hagler understood why his son reacted the way he did.
“A lot of kids with disabilities find comfort in routine,” Hagler told the Lansing State Journal. “When that routine gets broken, their anxiety goes up, and they tend to behave differently. We have had to keep up his routine, but it’s hard to do when you’re working full-time.”
The pandemic disrupted the lives of all children, but it has caused additional stress for those with disabilities. And parents and child experts alike are not only worried about their emotional state, but also how the lack of in-person instruction will affect children with special needs in the long run.
“Children with higher needs will need more consistent care,” said Brooke Ingersoll, a psychologist at Michigan State University. “Major breaks in services could lead to a loss in the skills they acquired. Without daily therapies, there could be some backsliding.”
Chris was born with fetal alcohol syndrome and cerebral palsy. Chris was adopted by Hagler and his wife, Jennifer, when he was 21 months old.
“He needs full-time care,” Hagler said. “Repetition is everything to him. If he doesn’t go back to school until August, he’ll have lost six months. It’s going to be really tough.”
The support Chris previously received from teachers and therapists has now fallen on his parents, who said they have largely been taking care of Chris’ needs at home without much guidance from the Lansing Public School District.
“My wife and I are not professionals,” Hagler said. “We didn’t go to school for years to do this. Fortunately, I went to enough of his physical therapy sessions and have a general idea of what goes on. Same with occupational therapy - I have a general idea.”
The Haglers want the best for Chris.
This includes the free speech, occupational and physical therapy services that are guaranteed by the federal Individuals with Disabilities Education Act.
“Many of the special education laws weren’t written with the pandemic in mind,” Ingham Intermediate School District Superintendent Jason Mellema said. The ISD partners with county school districts and ensures they’re compliant with federal and state special education laws.
“Our world has changed dramatically,” he added. “We are doing the best we can on a quick schedule. We are doing this in four to five weeks. It’s normally two years of planning.”
Hagler understands why the school year was cut short. He doesn’t blame anyone. But that doesn’t mean he’s happy about it.
And he has another reason to worry.
A provision in the Coronavirus Aid, Relief and Economic Security Act has given U.S. Secretary of Education Betsy DeVos the option to waive service requirements outlined in the Individuals with Disabilities Education Act. She was expected to make her decision by the end of April.
“If that happens, our kids will be further set back,” Hagler said. “Schools won’t be required to do what they currently do under the law.”
The Ingham ISD and the Lansing Public School District are working to adhere to the federal law and a state-mandated order that requires equitable access to education for all students, including those receiving special education and those without internet access and devices.
“Any special education staff who sees students, such as physical therapists and psychologists, will be in contact with students they already work with to offer lessons,” said Sam Sinicropi, Lansing’s interim superintendent. “The plan is there, and we’re now informing parents of what that plan is.”
Going into effect on April 28, the district’s new remote learning plan includes connecting special education students with their teachers and therapists via teleconferencing platforms.
All parents will be informed of the district’s new plan by the end of the week, according to Sinicropi.
By 4 p.m. on a recent Tuesday, the Hagler family received a call from Chris’ special education teacher/case manager who plans to work with Chris via the video-conferencing platform Zoom.
Hagler, who is currently working from home, will need to assist his son during any online learning.
Chris suffers from a vision impairment and can’t use technology alone. Hagler usually has to enlarge items by connecting his computer to his 50-inch television screen.
“As far as the remote learning plan, it will probably meet the needs of children, provided they have one involved parent who can take the time to work with their child,” Hagler said. “I have the feeling English as second language kids, kids with single parents who work, some special ed children and others – where the remote learning plan will not work.”
What has helped the Hagler family is the Zoom calls they have every two weeks with their son’s case manager at the Community Mental Health Authority of Clinton, Eaton, Ingham Counties.
“Our case manager has been a godsend during this time,” Hagler said. “She was the one who helped us get care while school has been out. She is our lifeline to services. She has been the only professional we have had regular contact with.”
The public agency arranged for a caregiver to assist Chris for nine hours a week so his parents can focus on work or take a break.
“Without assistance from Community Mental Health,” Hagler said, “one of us would have to be a full-time stay-at-home parent, which would crimp our finances.”
The pandemic has led to an influx of telehealth offerings and in-person parent-delivered therapy, according to MSU’s Ingersoll.
“Parents are video-conferencing with a therapist coaching them (to help their child),” Ingersoll said. “We work remotely with parents, coach them and help them with strategies. Having a therapist watch and provide feedback is helpful.”
Ingersoll and her partner, Anna Dvortcak, primarily work with children who are autistic, but she believes there are other offerings out there for parents whose children have different disabilities.
Spartan Caregiver Support launched at MSU in response to the coronavirus pandemic. The free service primarily helps children with autism, but providers can also generally consult with parents about how to reduce stress and help their children at home.
Parents can sign up online to get a 15- to 30-minute consultation via phone, video chat or another type of media.
“With the break in routine, it has led to challenges at home,” said Matthew Brodhead, the director of Spartan Caregiver Support and an assistant professor at MSU. “We noticed regressions with toilet training and more accidents at home. We’re seeing more tantrums and fits from kids. And they are responding to the worry and anxiety from adults on an hourly basis.”
“There will be an impact,” he added, “but the extent of it is the million-dollar question.”
Hagler has learned to celebrate the small accomplishments when teaching Chris at home.
“He understands a lot but can’t convey what he knows,” Hagler said. “We try to work on his colors and numbers with him expressing his needs through pointing and use of the limited sign language he has.”
The two take a 15-minute break so that Chris is not overwhelmed. Eventually, they pick back up with printouts from the school district’s website.
Though it has been a challenging time raising a child with special needs, Hagler wouldn’t change it for anything.
“Chris has a smile that can light up the world,” Hagler said. “It can be challenging and tiring, but the love you receive from that child and the fun you can have with that child despite their disabilities is worth it. It’s rewarding.”
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