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Why children with disabilities are missing school and losing skills

Fahmida Azim for NPR

On a recent school day in Del Norte County, Calif., in one of the state's northernmost school districts, 17-year-old Emma Lenover sits at home on the couch.

In some ways, Emma is a typical teen. She loves Disneyland and dance class. But she has already faced more adversity than some classmates will in a lifetime.

"All of October and all of November, there was no school because there was no aide" says Emma's mother, Melony Lenover, leaning her elbows into the kitchen table.

Emma has multiple health conditions, including cerebral palsy. She uses a wheelchair, a feeding tube and is nonverbal. To communicate, she uses a special device, like an iPad, that speaks a word or phrase when she presses the corresponding button. She is also immunocompromised and has mostly done school from home this year, over Zoom, with help from an aide in the classroom. At least, that's what was supposed to happen.

Melony Lenover says her daughter's special education plan with the district guarantees her a dedicated, one-on-one aide. But the district is in the throes of a special education staffing crisis. In the fall, without an aide, Emma had to stop school. As a result, she missed out on the dance and art classes she loves and regressed on her communication device.

The fact that a district could struggle so mightily with special education staffing that students are missing school – that's not just a Del Norte problem. A recent federal survey of school districts across the U.S. found special education jobs were among the hardest to staff – and vacancies were widespread. But what's happening in Del Norte is extreme. Which is why the Lenovers and five other families are suing the school district, as well as state education leadership, with help from the Disability Rights Education and Defense Fund.

The California Department of Education says it cannot comment on pending litigation.

"It's very, very, very, very difficult when we are trying to bring people on board, trying to provide these services, when we want the best that we can give – cause that's our job – and we can't," says Del Norte Superintendent Jeff Harris. Harris says he cannot comment on the lawsuit, but acknowledges the staffing crisis in Del Norte is very real.

Emma Lenover, left, works through a literacy lesson at home with special education teacher Sarah Elston. Emma loves these visits and, on this day, waited anxiously at the picture window for Elston to arrive.
Cory Turner / NPR
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NPR
Emma Lenover, left, works through a literacy lesson at home with special education teacher Sarah Elston. Emma loves these visits and, on this day, waited anxiously at the picture window for Elston to arrive.

In December, after the lawsuit was filed, district special educator Sarah Elston told the local Wild Rivers Outpost: "Just a few days ago I had two or three [aides] call out sick, they weren't coming to work, and so this starts my morning at 5:30 having to figure out who's going to be with this student... It is constant crisis management that we do in special education today."

Del Norte's isolation makes it more difficult to hire needed staff

The district sits hidden away like a secret between Oregon, the frigid Pacific and some of the largest redwood trees in the world. It's too isolated and the pay is not competitive enough, Harris says, to attract workers from outside Del Norte. Locally, these aides – like the one Emma requires – earn about as much as they would working at McDonald's.

Harris has even tried hiring contractors from Oregon. But "it's a two-hour drive from southern Oregon here," Harris says, "so four hours of the paid contract time was not even serving students."

The district's hiring process is also too burdensome, according to Harris, taking weeks to fill a job. Hoping to change that, the district declared a special education staffing state of emergency earlier this school year, but the problem remains.

In April, the district still had more than 40 special education job openings posted.

Melony Lenover says she knows supporting Emma can be challenging. But decades ago, Congress made clear, through the federal Individuals with Disabilities Education Act, that her daughter is legally entitled to that support.

The federal government said it would cover 40% of the cost of providing special education services, but it has never come close to fulfilling that promise. In 2023, the National Association of Elementary School Principals said, "Since the law was enacted, the closest the federal government has come to reaching the 40 percent commitment was 18 percent in 2004-2006, and current funding is at less than 13 percent."

All this leaves Melony Lenover chafing at what she considers a double standard for children with disabilities.

"If it'd been one of my typically-functioning kids who are not in school for two months, [the school district] would be coming after me," Lenover says.

In many places, a child who has missed about 18 school days – far less than Emma – is considered chronically absent. It's a crisis that triggers a range of emergency interventions. Lenover says Emma's absences weren't treated with nearly the same urgency.

While Emma Lenover still doesn't have a dedicated aide, she is finally getting help.

"We said as a team, enough is enough," says Sarah Elston, who is Emma's special education teacher. "We're gonna do whatever it takes to get this girl an education."

Elston has been working with her high school principal to patch together as much help as they can for Emma, including shifting a classroom aide to help
Emma participate in one of her favorite classes remotely, dance.

How the staffing shortage can become dangerous

Linda Vang is another plaintiff in the Del Norte lawsuit, alongside Emma Lenover's parents. On a recent Thursday, she sits at her kitchen table, her back to a refrigerator covered with family photos. She grips her phone hard, like a lifeline, watching old videos of her son, Shawn.

The cell phone videos show a young boy with a broad smile, being urged by his mother to pull up his socks. Or being taught by his doting sister to ride a scooter. Or dressed up for what appears to be a wedding, and doing the chicken dance. He is a joyful kid.

Much has changed since then.

Shawn is a pseudonym, chosen by Vang and his attorneys in the lawsuit. We're not using his real name because Shawn is a minor and his mother asked us to protect his identity.

To understand Shawn's role in the lawsuit – and the depths of Del Norte's staffing crisis – you have to understand what happened to him on Tuesday, Feb. 28, 2023.

He was 15 at the time. Shawn has autism and is nonverbal, and as part of his special education plan, he gets his own, dedicated aide at school. But again, because of Del Norte's struggles to hire enough special education staff, those aides are often in short supply and undertrained.

Shawn's lead teacher that day, Brittany Wyckoff, says, when he grew frustrated in class, his fill-in aide did not follow procedure. It was snack time, but "this staff said, 'No, you're not being calm' and pulled [the snack] away. So that wasn't the appropriate way to handle it."

Another staff member later told police Shawn had begun to calm down, but the aide still wouldn't give him the snack – pistachios. Instead, Wyckoff says, the aide used a firm tone and continued telling Shawn to calm down. Shawn got more agitated, hitting himself in the face.

The aide later told police he began to worry Shawn might try to bite him – because Shawn had bitten other staff before. Witnesses told police he warned Shawn, "You will not bite me. You will not bite me."

Wyckoff says standard procedure, when a student gets agitated and potentially violent, is to move classroom furniture – a table, a desk – between your body and the student. Instead, Wyckoff says, this aide moved furniture out of the way. When Shawn moved toward the aide, unobstructed, the aide raised his hands.

"The staff member just instantly reached out and choked [Shawn]," Wyckoff remembers. "And full-on, like one hand over the other hand choke."

Multiple staff told police, Shawn had not tried to bite the aide. Wyckoff says she was yelling at the aide to stop and finally pulled him off of Shawn, "who was turning purple."

How the incident led to missed school

The aide left school after choking Shawn and went to a local bar for a beer, according to the police report. He later told police he'd acted in self-defense. When he was arrested, for child endangerment, and asked why he hadn't called police himself, the aide said, because he'd been in many similar situations and didn't think this rose to that level.

The district attorney ultimately chose not to file charges.

Emma, left, works with her sister, Kelsey Mercer, to join one of her favorite school classes, dance, from home.
Cory Turner / NPR
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NPR
Emma, left, works with her sister, Kelsey Mercer, to join one of her favorite school classes, dance, from home.

Linda Vang says the incident changed Shawn. He became less trusting and was scared to return to the classroom. "It is the hardest thing in my life to watch my son go through this."

To make matters worse, after the incident, the school couldn't provide Shawn with a new aide, and, like Emma Lenover, he couldn't do school without one. After the encounter, he was forced to miss two months of school – because of the staffing crisis.

"It was just week after week, them telling us, 'There's no staff. There's no staff,' " Vang remembers. "I feel for him. I'm angry for him. I'm upset for him. It's hard."

Again, Superintendent Jeff Harris can't comment on the specifics of the lawsuit, or on the incident involving Shawn, but he defends the district.

"We don't come in everyday going, 'How can we mess with people's lives?' We come in every day going, 'What can we do today to make this work?' "

Shawn, like Emma, lost skills during his time away from school. His mother says he struggled more to control his behavior and was less willing to use his communication device.

Shawn is back at school and finally improving, Vang says. He even likes the aide he has now.

"It has been very hard the last year. But you know, we're getting there. You know, I'm doing my best, every single day."

With inadequate staff, students can lose vital skills

Wyckoff, Shawn's former teacher, says the staff shortage is so acute that some aides are being hired with little to no special education experience.

"They could know absolutely nothing about working with a student with special needs," Wyckoff says, "and [the district] is like 'Hey, you've gotta work with the most intensively behaviorally challenging student. Good luck!'"

Wyckoff says the staff the district is able to hire need more and better training, too. The stakes are just too high.

Superintendent Harris says the district does provide staff training, but he also has to balance that with the need to get staff into classrooms quickly.

Veteran special education staff in Del Norte tell NPR they've seen what happens when students with disabilities don't get consistent, quality support: They lose skills.

"One particular student, he was doing well," says Emily Caldwell, a speech-language pathologist in the district. "We were talking about removing his communication device from coming to school because he's communicating verbally."

Caldwell works with many students who, like Shawn and Emma, use a communication device. This student, though, had been learning to use his own voice. It was a big deal, Caldwell says. But the student began losing those skills as he was shuffled between inexperienced staff.

Emma, right, communicates with her sisters Ashley Lenover, left, and Kelsey Mercer using body language and a special tablet device.
Cory Turner / NPR
/
NPR
Emma, right, communicates with her sisters Ashley Lenover, left, and Kelsey Mercer using body language and a special tablet device.

Now, "he's not communicating verbally at school anymore, he's only using his device and only when prompted," Caldwell says.

"I have a student whose toileting skills have regressed," says Sarah Elston, Emma's teacher. "I have more than one student who have lost skills on their [communication] device, that is their only way of communicating with the world."

This sense of loss, Elston says, keeps her up at night.

Superintendent Jeff Harris acknowledges the effects of the staffing crisis have been painful.

"When you have a child who can't do something that they were able to do before because they don't have that consistency, that's hard. I mean, that's a knife to the heart."

Looking forward

The lawsuit against the Del Norte Unified School District and state education officials is ongoing. The families hope it will not only help their children, but also raise awareness around a crisis they know is larger than themselves – and larger than Del Norte.

In the meantime, Del Norte teachers are doing everything they can to support their students with disabilities.

Elston, Wyckoff and Caldwell all say they have raised alarms with the district around students not getting the support they're entitled to – and even being mistreated by untrained or inexperienced staff.

Caldwell says some veteran staff have quit out of frustration. Though she insists, she's staying.

"I just worry," Caldwell says, tearing up. "The kids I work with, most of them don't communicate effectively without support. And so they can't go home and be like, 'Hey, Mom, so-and-so held me in a chair today.' And so I feel like, if I wasn't there and if I wasn't being that voice and that advocate, who would be?"

Digital story edited by: Nicole Cohen
Audio stories produced by: Lauren Migaki
Audio stories edited by: Nicole Cohen and Steve Drummond
Visual design and development by: LA Johnson

Copyright 2024 NPR

Cory Turner reports and edits for the NPR Ed team. He's helped lead several of the team's signature reporting projects, including "The Truth About America's Graduation Rate" (2015), the groundbreaking "School Money" series (2016), "Raising Kings: A Year Of Love And Struggle At Ron Brown College Prep" (2017), and the NPR Life Kit parenting podcast with Sesame Workshop (2019). His year-long investigation with NPR's Chris Arnold, "The Trouble With TEACH Grants" (2018), led the U.S. Department of Education to change the rules of a troubled federal grant program that had unfairly hurt thousands of teachers.