‘She just wants a friend’: Families push for full school days for children with disabilities

Khloe, 12, loves drawing, writing and especially reading — in second grade, she was already reading at a sixth-grade level. But she only goes to school one day a week for two hours. The district said she needed shorter school days last year when Khloe threw a desk and fought with students in outbursts her mother attributes to a failure to support her needs. Khloe, who has been diagnosed with autism, ADHD and an anxiety disorder, had no individualized education plan for her disability when she returned to in-person learning after the pandemic.

Not being able to attend school regularly has saddened Khloe, stunted her education and isolated her from her peers, her mother says. It has also upended her family’s life. Her mother, Alyssa Warne, had to quit her job for a time in order to stay home with her. She described the fight to get her daughter back in the classroom as exhausting, stressful and sad.

“She just wants a friend,” Alyssa Warne said. “It’s not asking much to send your kid to school for at least one whole day.”

Across the country, advocates say, schools are removing students with disabilities from the classroom, often in response to challenging behavior, by sending them home or cutting back on the days they’re allowed to attend. 

Schools say the move can be necessary to keep students and teachers safe and prevent disturbances. But parents and advocates argue the shortened days, often referred to as informal removals, amount to discrimination and violations of students’ civil rights. Under federal law, it is illegal to bar a child from receiving the same education as their peers based on conditions stemming from their disability.

Alyssa Warne sued her daughter’s school and school district this month, alleging disability discrimination. School officials did not respond to requests for comment on the lawsuit. In an earlier email, the school director said she couldn’t comment on individual students because of privacy concerns.

Related: Hidden expulsions? Schools kick students out but call it a ‘transfer’

In Oregon, a clash between parents and schools culminated this spring at the statehouse. A bill to curb the use of shortened days, essentially giving parents veto power over such a decision, is pending in the House of Representatives after near-unanimous passage in the Senate. Pressure from school boards and superintendents hurt the legislation’s chances, its chief sponsor said.

“It shouldn’t have been controversial, because these kids have had this right for such a long time,” Democratic state Sen. Sara Gelser Blouin said of her bill. “I wish that we could serve these kids, respect these kids and lift these kids up and honor their rights without being ordered by a court to do so.”

“We wasted a year with a child who could do grade-level work.”

Chelsea Rasmussen, parent of an 8-year-old in a Grants Pass, Oregon, school.

Dan Stewart, managing attorney for education and employment at the National Disability Rights Network, said he wasn’t aware of other states with laws limiting schools’ use of shortened days as Oregon’s bill would have. But a number of states have issued guidance through their departments of education informing schools that shortened days could potentially amount to discrimination under federal law.

Since the 1970s, federal law has guaranteed students with disabilities the right to a free and appropriate public education in the least restrictive environment. This means that, as much as possible, they should be learning alongside their peers who don’t have disabilities, with necessary accommodations. It’s illegal for school districts to cite a lack of money or staff as a reason for not educating a child with disabilities.

But states don’t always enforce the law, advocates say. Instead of hiring specialists, training teachers or providing tailored services, they say, some schools are shortening students’ schedules as a way to manage difficult behavior. 

Related: When your disability gets you sent home from school

Oregon is embroiled in a lawsuit over schools’ use of shortened school days, filed by the nonprofit advocacy group Disability Rights Oregon in 2019. Experts appointed by the court to research the issue found that about 1,000 Oregon students with disabilities — most of them in elementary school — are on shortened schedules.

“While less than 2 percent of students in special education are placed on a shortened school day, for those students and their families, this amounted to often a dramatic decrease in the amount of instruction received, a loss of opportunities for interaction with peers, and an educational program that put them in a position to lag further and further behind their peers in both academic and social emotional skills,” the experts’ report said.

This spring, in the debate over the bill, teachers unions said a lack of specialized training and a post-pandemic crisis in student mental health were putting them in harm’s way and disrupting classrooms.

“Education employees are reporting frequent injuries caused by students, and yet they are provided with limited training and scarce options to protect themselves from harm,” wrote Susan Allen of the Oregon School Employees Association.

But schools receive federal and state money for kids with disabilities that they should use for training and staffing, advocates say. 

“Resource allocation is a decision, and school districts have decided not to invest,” said Meghan Moyer, public policy director for the nonprofit advocacy organization Disability Rights Oregon.

“I wish that we could serve these kids, respect these kids and lift these kids up and honor their rights without being ordered by a court to do so.” 

Oregon State Sen. Sara Gelser Blouin

For some Oregon families, the bill’s stalling is only their latest setback.

Another parent in Grants Pass, Chelsea Rasmussen, has been fighting for more than a year for her 8-year-old daughter Scarlett to attend full days at school.

Scarlett reads at her grade level, but is nonverbal and uses an electronic device and online videos to communicate. She was born with a genetic condition that causes her to have seizures and makes it hard for her to eat and digest food. Because of her medical needs, the school must have a resident nurse on site.

After the pandemic, Scarlett’s mother agreed to start her on a three-day school week to ease her into in-person learning for the first time. But it took months of meetings to bump her up to five days a week, Chelsea Rasmussen said. School employees, she said, told her the district lacked the staff to tend to Scarlett’s medical and educational needs at school.

Officials at the school system attended by Scarlett, Grants Pass School District 7, said staffing was not a factor in her case.

“We try not to shorten days for students with special needs,” said Vanessa Jones, the district’s director of special services. “It’s a team decision and we use it as sparingly as we can.”

At home, Scarlett kept showing her mom online videos of children playing or Sesame Street lessons. She longed to be at school, her mother said.

“We wasted a year with a child who could do grade-level work,” Chelsea Rasmussen said. She plans to continue speaking out — both for Scarlett and other families struggling with the same issue.

“How can you not allow a child to have an education?” she said. “We don’t feel like we should have to fight that hard for a student to feel like they belong.”

Claire Rush is a corps member for the Associated Press/Report for America Statehouse News Initiative. Report for America is a nonprofit national service program that places journalists in local newsrooms to report on undercovered issues.