Syrita Powers has advocated for her three daughters to get the resources they need in school. Her 11-year-old is autistic and works with reading and math specialists, while her 9- and 7-year-old sisters are nonverbal and have aides who even help them in the bathroom.
“My husband and I had a plan,” said Powers, of West Philadelphia. They told the schools: “If you all just meet us halfway, we can see what they’re capable of.”
They don’t know how they will manage at home.
With schools closed for the foreseeable future due to the coronavirus outbreak, families across the region have been challenged to oversee their children’s education. But for parents of students with special needs, the task is more daunting. Many are unsure how to assume roles normally filled by teams of professionals while also managing disruptions to their children’s lives.
“My worries are that … my children will regress, that it will take triple the support to get them back” to their current level, Powers said. “I’m just concerned they’ll lose everything we worked so hard to maintain."
About 300,000, or 17%, of Pennsylvania public school students have special needs. In New Jersey, the percentage is slightly higher.
How schools are providing them services during the closures varies, advocates say, ranging from direct instruction and therapies over Zoom video calls, to limited to no communication with families.
Powers had yet to receive guidance last week from the Philadelphia School District — which launches its online learning program Monday — on instructing her daughters. Another Philadelphia parent, Anna Perng, said her 7-year-old autistic son’s teacher had been e-mailing the boy, when “I didn’t even know he had an email account.”
Perng, of Chinatown, said her son is nonverbal. When she asked about meeting his speech language needs, his teacher recommended the purchase of a $90 workbook.
“There’s a pretty big gap" as to what districts are offering, said Mike Connolly, a lawyer with McAndrews Law Offices in Berwyn who represents parents of children with disabilities. “There’s a concern that for most students, under this circumstance, they’re not going to get everything” they would be entitled to in a classroom.
Federal law requires that school districts provide students with disabilities a “free and appropriate public education," prohibiting their exclusion from educational programs.
In Pennsylvania, some schools initially said they wouldn’t instruct any students during the closures, after the state advised that districts couldn’t offer remote instruction unless all students had equal access. Federal education officials rejected that approach, telling schools that concerns about compliance with special education law should not prevent them from providing remote instruction.
Advocates are concerned that protections for students receiving special education will be weakened based on the federal CARES Act, which could enable waivers of certain requirements.
“School districts are trying to avoid litigation, and that’s understandable, but we’re concerned if we start waiving protections for students, then the services they receive will diminish even further than what’s happening now,” said Phillip Lovell, a vice president at the Alliance for Excellent Education, a national policy and advocacy group focused on improving high schools.
As some districts have faced challenges in transitioning to remote instruction, “we have a deep concern that the children who are most educationally at risk, including students with disabilities, are falling further behind their peers,” said Maura McInerney, legal director of the Education Law Center in Philadelphia.
Even in districts providing more extensive remote services to students with disabilities, “we are seeing almost across the board a reduction in the frequency and intensity" of the programs, Connolly said.
Many students have special education plans that entitle them to receive therapies. In some cases, therapists are connecting with children over video; in others, parents have received worksheets with instructions to follow.
Patty Gibbs-Biluck’s 17-year-old daughter, Rebecca, has autism and a panic disorder and is entitled to speech services five times a week. Initially, Delran High School sent home a packet for her to work on in lieu of services, which Gibbs-Biluck said was inadequate. Now, services are being provided remotely, via computer.
“Why do we have to fight so hard to get what our children need?” said Gibbs-Biluck, whose family has settled a lawsuit with Delran over Rebecca’s services. “It’s not OK to just give her the bare minimum. We should be saying, ‘How could we think outside the box to give her services?'"
The pandemic will likely erase months of progress, Gibbs-Biluck said. Quarantine has been hard for Rebecca, who pulls her hair out when she’s anxious. Gibbs-Biluck and her husband are keeping Rebecca busy with literacy activities, word searches, reading online, arts and crafts, taking virtual tours of museums, and baking with her mom.
“But there are things that we just can’t provide," she said.
School leaders say they are working to get services to students. Sister Maureen Lawrence McDermott, superintendent for secondary schools for the Archdiocese of Philadelphia, said teachers are working to provide services with technology and one-on-one supports.
Often, that means being available outside regular school hours to loop families into the learning. “We’re really looking at this time not as a cancellation, but as an adaptation,” Sister Maureen said. “It’s so important to our families and to our students.”
Still, parents said the switch to video lessons and therapies has been challenging.
Firdosh Shaikh can secure her son, who is 3½ and has Down syndrome, in a high chair for virtual speech therapy. But that doesn’t work for other sessions; during a recent attempt at physical therapy, "half of it was me chasing him all over the house and bringing him back to the screen.”
Seeing therapists on a screen “doesn’t engage him as much,” said Shaikh, of Wayne. Her son is in the state’s Early Intervention Program for young children with developmental delays, and before the closures had been spending three days a week in classrooms through the Chester County Intermediate Unit and two days a week in preschool.
Perng tried to do an activity with her son on a Chromebook that showed pictures — insects, numbers, stars — asking what belonged, what came next in the series. He had never used the computer before and became upset.
Normally a teacher would notice her son’s frustration and direct him to use his communication device, Perng said. But with a website, “they just keep prompting you to go to the next activity.”
Remote instruction also doesn’t allow for the socialization parents say is critical for their children’s development. While some of Nate Hoenig’s classmates in the North Penn School District sent him a “super nice” video message, Michele Hoenig said her son, a seventh grader with Down syndrome, has lost out on peer modeling he “thrives on” for academic and social learning.
“It’s kind of heartbreaking,” Hoenig said.
Syrita Powers, the West Philadelphia parent, picked up Chromebooks from the School District for two of her children last week, but isn’t sure how to use them. She planned to ask Madison, her 11-year-old, for help.
Powers doesn’t know how Madison will sit in front of a computer to work without her specialists. And she doesn’t know how she and her husband are supposed to teach the younger, nonverbal girls, Georgia and Logan.
The girls “make noise, they rock. They do what children of different abilities do,” Powers said.
“We’re going to do our best, but it’s not easy. It won’t be,” Powers said. "It’s kind of like, you have to be everything or you feel like a failure. … The weight of the world as far as your children’s skill or success or decline is in your hands.”