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Coronavirus school shutdown has been particularly tough on kids with special needs: ‘It’s not just a disruption. We’re going to see kids who actually go backward.’

Chicago Tribune - 4/27/2020

When their fevers finally broke, Christine Palmieri and her sixth grade son Miles had a whole new world to navigate -- one without speech therapy or recess buddies, with more screen time and less human interaction.

Miles, who is autistic, normally receives special education services at school, but those have been severely cut back since Illinois schools closed due to the coronavirus and he and his mother experienced symptoms of COVID-19. The 11-year-old Chicago boy had milder, flu-like symptoms and a 100-degree fever for nearly two weeks. The illness was harder on his mom. It got so difficult for her to breathe that once she fainted in the kitchen of their Lakeview condo.

“We really were just focused on surviving and staying healthy,” she said.

Though they’re feeling better, Miles and his mother are now looking ahead at the weeks or months it may take before he can return to the routines and services he gets at school.

“Being an autistic kiddo can be very isolating, and he will withdraw into his own world a bit,” she said, “so I need to have as many opportunities to keep him engaged as possible.”

The shutdown of schools across Illinois -- now extended for the rest of the academic year -- has created particular hardships for families of students with disabilities. Some students are paired with full-time aides at school or get speech or physical therapy, roles that aren’t easily filled by parents who are also figuring out remote learning, working from home or dealing with their own economic challenges.

“The school closures have been hurtful to all kids, but students with disabilities are most vulnerable, and tend to react badly to transitions,” said Chicago attorney Matt Cohen, who represents families with special education and school-related issues.

“For special education students, school closures are not just a disruption but a regression, and we’re going to see kids who actually go backward,” Cohen said.

Even during normal times, the quality of special education in the Chicago area ranges from excellent to poor, often depending on a district’s leadership and funding, Cohen said. He predicted the recent pivot to remote learning will likely have a negative effect on most students with special education plans.

Cohen contends that many schools aren’t providing students access to their full-time aides.

“And even those that are, when we’re talking about kids with more severe cognitive, motor, attention, behavior and health issues, many of these kids are just not going to be able to do it (remotely),” he said.

Palmieri, an architect and an advocate in the Chicago special education community, said some schools “hit the ground running three weeks ago with full supports and services.” But with other schools, she said, “families have received zero communication.” Even through the second week, across schools, “some (special education) staff are doing great and some are not for various reasons, both within and without of their control,” Palmieri said. For some of the children waiting on services, the time to draw them back in may have passed, she said.

The Illinois State Board of Education has made clear that schools must still address the needs of students eligible for special education services, but less apparent is what qualifies. The U.S. Department of Education has noted schools may not be able to provide all the services they usually do, and indicated schools would “offer flexibility where possible.”

Chicago Public Schools officials have said they’ll do what they can but, during remote learning, can’t commit to providing the full amount of service minutes outlined in a student’s individualized education plan during remote learning, with teachers not expected to work full days.

Stephanie Laine-Nazaire said her first grade twins, who attend Murray Language Academy in Hyde Park, are missing out on speech lessons. She said both children, born at 23 weeks, are on the autism spectrum, with one of the boys needing more specialized instruction than the other.

For one twin, things have been going OK. For the other, "it’s been pretty much heartbreaking,” Laine-Nazaire said. His special education teacher has been posting videos, but they’re not interactive, and he misses his friends, she said. She tried having him sit in online general education classes, but though the teacher has been making an effort to include him, he gets down when he can’t follow along with the reading and math lessons he’d usually be pulled out of.

“He has felt very dejected during this process,” she said. “He sees his brother having the interaction. It’s gutting.”

Laine-Nazaire, a graduate program administrator at the University of Chicago, said she empathizes with teachers, who she believes are doing their best. But without services like speech therapy, she’s concerned.

While one twin mostly needs help with enunciation, the other mixes up pronouns and time references -- “for him, everything happens yesterday, even if it was five months ago."

“The way he process something is the only way he can see it,” Laine-Nazaire said. “You have to find a way to undo the way his mind sees it.” Both twins also need to continue occupational therapy, where one boy was learning coordination and how to grip a pencil.

CPS policy has been updated to allow school psychologists, counselors and social workers to have one-on-one video calls with students if certain circumstances are met -- something that’s typically forbidden between students and staff members. But parents of students who need speech or occupational therapy say their children should be allowed that too. On a recent Zoom call with special education parents and supporters, CPS’ chief of diverse learner services, Stephanie Jones, said speech therapy was not allowed one-on-one, but the district is considering other ways to provide that service.

Whether all missed speech or occupational therapy time will be made up later remained unclear in an updated fact sheet released by CPS last week.

In new guidance released April 20, the Illinois State Board of Education noted federal recommendations that schools consider teletherapy. The state agency noted districts are still expected to comply with federal and state law “as it is presently interpreted” during the coronavirus outbreak.

Commonly called SECAs or aides, the classroom assistants in CPS have been spending their time during the school shutdown “supporting teachers” in various ways, including attending virtual lessons with teachers, according to the district. But Palmieri said they need to continue supporting students directly. Many students like her son need an aide to participate in remote learning for the same reasons they get that support in the physical classroom, she said.

Miles has a full-time aide in school, whom he considers a trusted adult, and he’s also often pulled from general education classes and meets one-on-one with his social worker and other specialists. His mother said he has not been able to get the one-on-one speech or occupational therapy he’s used to having weekly.

Last week, he was supposed to start having small-group video sessions for math. But during the second session, he was the only student who showed up, and the teacher said they had to end the video call when no other students were logging in, Palmieri said. He held it together on camera, but then he started crying.

“He is really wanting engagement and not getting it,” Palmieri said. She’s already noticing him start to withdraw and hopes it’s not a permanent regression.

On Friday, the school’s speech therapist sent a speech-language newsletter put together by the district saying CPS has not yet given the OK for speech therapy through teleconferencing but “we are hopeful this will change.”

Both parents and teachers have said they need clearer guidance.

“The guidelines have been all over the place,” said Linda Perales, a bilingual special education teacher. “Can we use Zoom; can we not use Zoom? Can we have one-on-one sessions? ... Is technology being given to our students?"

She added: "We are doing the best with what we have, but in reality we need more guidance.”

At Corkery Elementary in Chicago’s Little Village, Perales works with 12 students who are pulled aside from their general education classes. Remotely, she’s been upholding their routine as much as she can, assigning similar work to what they do at school.

For the eight students in her virtual classroom, she put together bags with materials they might need, such as pencils, scissors, dry erase markers, glue and crayons, and dropped them off at schools. All eight families picked up their bags there, but only six have been able to engage in Zoom lessons. One student’s mother had her phone disconnected; another works in a grocery store and “is really overwhelmed right now,” Perales said. “The encouraging thing for me is the majority of my parents have been responsive and they’ve been on the calls with my students.”

Perales and her peers are trained to work with students in special education programs, and it’s expecting a lot of parents to fill that role, she said.

“I know a lot of them are trying, but they don’t know exactly how to teach the diverse learners,” Perales said. “A lot of students in special education have difficulties with concentrating and focus in the classroom. There’s a routine set up and the student knows the routine, the teacher is in the classroom, maybe a paraprofessional is in the classroom that may redirect the student constantly. But when a student is at home they may not have that support.”

As the mother of two students who attend Abraham Lincoln Elementary school in Lincoln Park, Anne Chalesle said her family’s remote learning has been particularly challenging for her younger son, Raphael, 8, who has a special education plan that provides extra help for math and reading.

“As a parent with a diverse learner, I’m still trying to figure out how this is going to work,” said Chalesle, an administrator for a nonprofit organization.

Raphael typically gets pulled out of class every day for an hour for math help, and when schools closed, "it just stopped,” she said.

Still, Chalesle said she has nothing but admiration and gratitude for her son’s teachers, including one who has reached out directly to him with messages of support and encouragement.

“The fact that she has to teach a special education class online for an hour each morning ... they’re doing what they can do with the worst of circumstances,” Chalesle said.

With both Chalesle and her husband working from home, she said Raphael and his brother, Gabriel, 14, have two parents available to “troubleshoot.”

“I’m trying to keep things in perspective. ... There are many parents who are essential workers at hospitals and grocery stores, or who don’t have an internet connection," Chalesle said.

For April Soristo Anderson, having a child in special education programs for both cognitive and physical disabilities has made her family’s transition to e-learning difficult. Her daughter Guilianna, 9, had a one-on-one nurse supporting her in the classroom at Prairieview Elementary School in Bartlett.

“It’s very challenging to try to explain to a special education student that even though she’s at home, she can’t just play with her toys, and it’s school time,” Anderson said.

Above all, Anderson said she’s worried that Guilianna, a twin, is falling woefully behind, especially as her medical condition caused her to be absent from school frequently even before the pandemic.

“She already was owed more than 20 hours of tutoring due to her absences. ... I’m petrified that she’s going to regress back and forget everything she’s learned this year," Anderson said.

Perales worries about regression for students with learning disabilities that make retention a struggle already.

Denise Dyer, whose eighth grade granddaughter receives help from a special education teacher at Nicholson STEM Academy in Englewood, shares the concern, and the sentiment that parents and guardians are ill-equipped for remote learning.

“We have to find whole new ways of doing things,” Dyer said. "We weren’t trained to do this. I don’t know how to make adjustments to her algebra or modify it in some way. I can’t do that. There’s nothing I can do to help her.”

She’s tried to fill in other gaps, ordering copies of “The Outsider” for both the eighth grader and her older brother to read at the same time, along with chapter quizzes. She also got texts on African American history, adding on their own family stories.

As a member of the CPS parent advisory council for diverse learners, Dyer talks to parents from all over the city and said many share her frustration that communication to families has been inadequate. Many parents “truthfully cannot say” that children have been able to continue learning.

“Now I am afraid that when this is all over that these children are going to be so far behind, and when you’re already behind you can’t afford to get further behind,” Dyer said.

Already, special education lawyers are anticipating an influx of claims seeking compensatory services, and recommending families keep detailed records during remote learning. ISBE is also telling schools to document educational opportunities offered to students during the suspension of in-person instruction.

CPS officials have said the district will do its best to make sure students get services. “However, we do understand that there may be instances where a student has not received services for an extended period of time,” according to a district fact sheet. “When that occurs, compensatory services will be considered on an individual basis following the school closure period.”

kculotta@chicagotribune.com

hleone@chicagotribune.com

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