This past summer, Ashley Garan was consumed with worry about her 9-year-old son, Max, who has severe autism. For the last four years, Max attended Giant Steps, a private special-needs school in Southport, Conn., but the school closed its doors permanently in June, citing concerns that it would not be able to keep students and staff safe during the pandemic.
While Max’s twin, Molly, was set to start the school year in Greenwich on Sept. 8, at the neighborhood public elementary school, there seemed very few options available for Max, who is intellectually disabled, nonverbal and prone to self-harming behavior such as banging his head into the wall. While he initially began his education in the public school system, by the time he was in kindergarten Garan had requested that the district outplace him to a private school.
“The staff wasn’t trained to handle his needs — I would hear horror stories about how he was lying in the middle of the hallway licking the floor,” she recalled.
Just over seven million, or roughly 14 percent, of public school students receive special education services, according to the U.S. Department of Education. Under the Individuals with Disabilities Education Act (IDEA), passed in 1975, school districts are required to provide a free and appropriate public education (FAPE) to children with disabilities in the least restrictive environment. (In cases like Max’s, where a school district can’t meet a child’s needs, they are legally required to pay for a private education.)
When the coronavirus pandemic first hit, the Education Department stressed that all public schools that would be providing virtual or online education during the pandemic must continue to serve their students with disabilities. But a survey released at the end of May by the advocacy group ParentsTogether, found that 40 percent of kids in special education hadn’t received any support at all, and only 20 percent received all the services they were entitled to. Over a third were doing little to no remote learning, compared with 17 percent of their general education peers.
Parents grapple with the complexities of remote learning
As the new school year gets underway and more and more school districts adopt remote-learning plans, parents of special-needs children are bracing themselves for another year of little to no support. Camie Rodan, 37, worries about a year of lost kindergarten for her 5-year-old son, Solly, who has cerebral palsy. Her family moved from Nashville, Tenn., to Los Angeles County this past winter, and in early March she requested that the school district assess Solly, who had previously attended a private preschool, for special education services.
Ten days later schools were shut down, and a state bill was passed on March 17, SB-117, that allowed school districts to put these types of assessments on hold until districts opened again for in-person learning.
Rather than have Solly begin school without any supports or services — such as a special-education teacher and occupational, physical and speech therapies to help him access distance learning — Rodan has opted to pull him out of the school system this year and home-school instead. “Solly is nonverbal and in a wheelchair — he can’t even scribble lines, much less form a letter,” she said. Rodan plans to pay out-of-pocket for extra services with a private therapy team, but “there’s no way he will be able to receive anything close to an adequate education this school year.”
Similar struggles are playing out across the country, as parents grapple with how to deal with the complexities of remote learning. What many families don’t realize, said Denise Marshall, CEO of the Council of Parent Attorneys and Advocates (COPAA), an independent national association that protects the legal and civil rights of students with disabilities, is that the federal laws surrounding special education, specifically IDEA, remain exactly the same. (SB-117 was passed during a temporary emergency, and if California school districts continue to hold off on providing assessments they may be in violation of federal law, she added.)
“School districts still seem to be convincing parents that the way the things that are done right now are different because of Covid-19, but that’s not the case,” said Marshall. This past July, groups representing school administrators, such as the School Superintendents Association, called on Congress to grant them liability protections related to their obligations under IDEA. But the U.S. Department of Education had denied similar requests this past spring, she said, and there’s no reason to think legislators will allow IDEA to be relaxed now.
In fact, under IDEA, students with disabilities are still entitled to compensatory services once the school year begins, even if school hasn’t officially reopened in person, said Perry Zirkel, Ph.D., J.D., professor emeritus of education and law at Lehigh University in Bethlehem, Pa. He recommends requesting a meeting at the beginning of the school year with your child’s IEP (individualized education program) team, so that you can meet and determine your child’s present level of performance. If a parent can show that their child has actually regressed from where they were on the day schools closed for the pandemic, then they’re eligible for more intense services, Zirkel added.
Lack of funds and safety concerns for in-school learning
Further complicating the issue is the fact that many school districts want to do the right thing for students with disabilities, but don’t have the necessary funds to do so, said John Eisenberg, executive director of the National Association of State Directors of Special Education (NASDSE). “They’re facing massive budget deficits due to implementing safety measures for the pandemic, and the unique needs of kids with more significant disabilities — special busing, complex technology — drives the cost up even more,” he explained. A Senate bill, S4100, Supporting Children with Disabilities During Covid-19 Act, sponsored by Democratic senators Chris Murphy and Maggie Hassan, has sought to appropriate $11 billion for state grants under IDEA, but it’s currently on hold in Congress.
In some cases, where districts do have the funds, they have gone in the other direction, allowing children with disabilities back to school five days a week, even while their typical peers do hybrid or remote learning.
But for some parents, that has its own set of challenges. Maggie Gaines, 47, has a 7-year-old daughter, Margot, who has Down syndrome. Margot is going into first grade, and up until the pandemic had always spent at least 80 percent of her day in the general education classroom, instead of a self-contained classroom with other special education students.
Her school district in Wayne, Pa., is beginning the school year virtually and will allow parents to opt their children into a hybrid model on Oct. 9. Children with developmental disabilities, like Margot, will also have the option to return to school full-time in October, but only two of those days will be in the general education classroom. The remaining three will be spent in the Life Skills classroom working with a special-education teacher and related therapists, something that Gaines has rejected. “I don’t just want her sitting on a computer all day in a segregated classroom with her aide,” said Gaines, who is now exploring sending Margot to a learning lab at her local Y.M.C.A. on her nonschool days, so that she can be with her typical peers.
“She’s only in first grade, but it’s in these younger grades when friendships are easiest to form and when all kids are learning social skills,” she explained. “It’s definitely a hard trade-off.”
There’s also a concern among some parents and educators that if it’s not safe for all students to return, then it’s not safe for kids with disabilities. “People with disabilities have historically been ‘guinea pigs’ for medical experiments,” said Valerie Williams, director of government relations for NASDSE. Williams, who has a 9-year old son, Matthew, with Down syndrome, said that even if her school district in Maryland offers some in-person services for him this fall, she will keep him home. “It’s not worth the risk to his and our family’s health,” she said.
Instead, Williams has worked closely with her son’s team of educators, as well as his school district’s special education administrators, to make sure he gets as comprehensive an online program as possible. “Matthew’s not getting all the services in his IEP, but it’s unrealistic to ask for perfection right now,” she said. “But his school has done a good job of collaborating and communicating with me, and I can honestly say they are doing all that they can at this point.”
On a positive note, more school districts and families of kids with disabilities are working together — like Williams and her son’s Maryland district — to try to make sure their children’s educational needs are being met, said Nina Gupta, an education attorney at Nelson Mullins law firm in Atlanta, who often represents school districts. While relationships between parents of kids with special needs and school districts can often be antagonistic, “we’re really seeing a collaborative trend, which we all hope continues because we know that leads to the best outcomes,” she added.
Some parents, though, have become frustrated enough to take matters into their own hands. After a summer spent touring local special-needs schools, Garan found that most were either unable or unwilling to accept Max because of his extreme behaviors. She joined forces with a handful of other families from Giant Steps to start up another small private special-needs school, Hubbard Day, in Greenwich.
Max began his school year on Sept. 10. “He seems so much happier being back in a structured school setting,” said Garan. “The next morning, he was so excited to return, he was out the door before I had time to brush his teeth. All any parent wants is to know that their child is safe and happy and learning. Right now, I finally have that.”