How three special education families in New Jersey are coping with distance learning

Hannan Adely
NorthJersey.com

Nearly a month into mandatory remote learning, many families and school districts are still grappling with ways to help special education students learn at home.

Across New Jersey, families are creating routines for children who just weeks ago may have had one-on-one aides, physical and speech therapy and counseling in school. Some families are still struggling to secure substitute services from their districts.

“For any kid out of school for three months, even if they are getting instruction two hours a day, it’s not a good prospect,” said Peg Kinsell, policy director for the Statewide Parent Advocacy Network (SPAN), which supports families of children with disabilities. “Even though Mom and Dad may be home, they are not special education teachers, speech or language pathologists or occupational therapists.”

School districts must provide an appropriate education “to the greatest extent possible” for more than 200,000 students with disabilities in New Jersey, according to state and federal guidance. They cannot send staff to students’ homes because of social distancing, so a patchwork of instruction was rapidly put in place for exercises, interventions and academic work that varies from district to district.

On April 1, the state Board of Education approved an emergency measure allowing schools to provide therapy and services online. Some schools started immediately, while others are taking longer to roll it out, frustrating parents.

Education and disability advocates have called for the state to monitor education services and plan for ways to make up for gaps when the coronavirus pandemic ends and schools reopen. Gov. Phil Murphy, who ordered all schools closed by March 18, has not said when or whether schools will be able to reopen this school year.

In the meantime, families and schools are trying to keep special-needs students from falling behind. In most scenarios, that means parents must play a significant role in supervising work, connecting their children online and helping them with physical exercises. The amount of parental involvement differs according to the student’s level of disability and need.

Three families spoke to NorthJersey.com about how they are adapting to remote instruction for their special-needs children.

Adjusting plans 

William Martinez of Prospect Park has been helping his son Angel, 13, a Manchester High School 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.

William Martinez helps his son, Angel, 13, with remote learning. April 9, 2020.

Angel’s case manager also reached out to see if he needed a Chromebook to use at home and if he could connect to Wi-Fi.

On the day when the state lifted restrictions on teleservices, the speech therapist sent a message asking for a virtual meeting using the Zoom app. Martinez said he is waiting for word about online occupational therapy.

“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.”

Another concern is the lack of classroom routine, which is important for individuals with autism.

“We tell him: You still have to get work done,” he said. “You are still in school. My son understands that, but I do see some regression because he’s not in a set classroom routine.”

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Martinez is also chairman of the Prospect Park Special Education Parent Advisory Committee. The district, he said, is entering the second phase of its emergency plan. Officials announced they will distribute Chromebooks after spring break, which ends April 17, and will reach out to parents to make sure they have the capabilities to use Zoom, he said. After that, they will begin online therapies.

In both districts, plans kept evolving to meet students' needs. 

“Prospect Park and Manchester have done a great job, with the time they had, making sure our children are ready,” he said.

Worried and paying for private care

Since schools closed, Marian Raab has been deeply worried about her son Ethan, 13, who has cerebral palsy and global apraxia, neuromuscular conditions that affect his speech, fine motor skills and gross motor skills.

At Maplewood Middle School, Ethan is a high honors student in a regular class and 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.

With school closed, she's worried he will regress.

“I know the district is in a difficult situation, but we have been forced to provide these services for our son,” said 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 are 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, not just in our district, but in districts across the state.”

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‘No one to help me’

Kym Lesch of Bloomingdale sends three of her four sons to private schools with special programs for children with autism; their schooling is paid for by the state. Her oldest, considered high-functioning, goes to the Craig School in Boonton. Her 16-year-old twins attend Garden Academy in West Orange.

Lesch takes instruction from teachers online and guides the twins, Nicholas and Nathaniel, through their lessons. They 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.

Nicholas Lesch participates in remote learning at his home in Bloomingdale. April 9, 2020.

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,” she said.

“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 laminator. A laptop and iPad stand are on the way, the school told her.

“They are trying to help us do as much as we can,” she said. 

Nathaniel Lesch participates in remote learning at his home in Bloomingdale. April 9, 2020.

Her older son, Jacob, 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.”

Calls for a task force

Kinsell, of SPAN, said some districts are doing better than others in meeting students’ needs. The most helpful ones, she said, are those that had strong emergency plans in place and that are in frequent communication with families.

“In those districts, families are getting calls from case managers, talking to teachers, paraprofessionals and therapists," she said. "They are in the loop and not just on an island by themselves.”

From the outset of school closings, advocates raised concerns that special education students would fall behind.

In a letter last month, nine nonprofit groups called for the state to set up a task force to monitor how remote education is working, with special attention to at-risk groups. The task force should look out for problems, recommend corrective action and plan for ways to make up gaps when the pandemic ends, they wrote.

“There has to be continual reporting from districts on how this is rolling out and what progress they are making,” said David Sciarra, executive director of the Education Law Center. “We know there are going to problems ensuring continuous learning for kids with disabilities and kids who need early interventions.”

The state Education Department has surveyed all districts and has formed teams to reach out to local schools to discuss the challenges and obstacles they face in remote instruction, said Michael Yaple, a spokesman for the agency.

Special education has been part of the focus, and the department has also been in touch with groups representing parents and schools for the disabled, along with other advocates, Yaple said. Access to speech, occupational and physical therapy has been "a major issue," although the rule change adopted by the state Board of Education has allowed more services to be offered online, he added. 

Work could potentially be made up in the summer, Sciarra said, though he noted that many special-needs students already enroll in summer programs.

"We need to be upfront about it," he said. "This is not ideal. There are kids who are going to lag behind, and remote learning is not going to be effective for them. They may not get support services they need. When they enter the school building and classroom again, they are going to need a lot of help to catch up."

Hannan Adely is an education and diversity reporter for NorthJersey.com. To get unlimited access to the latest news, please subscribe or activate your digital account today.

Email: adely@northjersey.com Twitter: @adelyreporter