The Register Citizen (Torrington, CT)
Parents: Distance learning a ‘disaster’ for kids with disabilities
As remote learning continues in summer-school programs and remains a possibility for the upcoming school year, parents of children with disabilities call the system a “disaster” that fails to provide students with services they are legally entitled to and desperately need.
“My children have both lost skills, they have had behavior issues, bed wetting, self-injurious behaviors since this started,” said Tracey Ruscil of New Milford, the mother of two 10-year-old boys with autism.
Many children with disabilities attend school with an individualized education plan that outlines the services they must receive in order to access a free and appropriate education. It is designed by a student’s special education team with input from their parents. During a normal school year, an IEP will include services like speech language pathology, special education, occupational therapy and physical therapy. While these specialists have often done their very best to provide meaningful virtual services throughout the pandemic, parents of children with IEPs attest that virtual learning does not work for their children.
Since schools closed in March, special services like OT, PT and speech have been provided virtually in various ways. In many cases, the provider would send the parent some ideas of activities to work on at home. For example, a PT may suggest passing a ball to practice motor skills. An OT may provide fine motor activities via email. In other cases, the therapist will meet with the child on a video call.
However, this puts the responsibility of coordinating — and even providing — the therapy on parents since the provider is not there to assess how the child is performing the task, if it needs to be modified or if they are even doing it.
While Ruscil said she is trying her best to attempt the activities that the therapists and teachers suggest, she feels that her efforts are not rewarded with learning.
“I have a sheet of paper that says, ‘Ask questions about what, when and where,’” Ruscil said of speech therapy assignments. “I can ask them, but I don’t know any strategies that a teacher would know. For PT and OT, I can tell them to jump rope and do sit-ups but I don’t know what I am doing.”
For Ruscil, the start of the pandemic has taken a massive toll on her kids and on her mental health.
“I am terrible,” Ruscil said. “I had to up my anti-anxiety medicine. I’ve had to halfway quit my job. I’m a Realtor and I can’t work as much, so I am going to lose money and it’s awful. I had to become a full-time teacher.”
Ruscil is not alone. Parents across the state and the country have expressed frustration about virtual learning along with fear that their kids are falling behind. But for children with special needs, these concerns are exacerbated.
Nanfi Lubugo, co-executive director at PATH Parent to Parent/Family Voices of Connecticut, a parent support group that Ruscil is involved in, acknowledged that the past several months of virtual learning were difficult for every family but emphasized that the families she works with face a unique struggle.
“It was not adequate for any child, it was grossly inadequate for kids with disabilities,” Lubugo said.
Carmela Mangini, a parent of two children with IEPs said that her son, who has autism, was on a “downward spiral” even before COVID-19 hit Connecticut. Closing schools made matters worse because the virtual workload was piling up. A provision in his IEP allowed for reduced workload.
“We reduced the workload,” Mangini said. “That didn’t work. He needs one-on-one. I am not going to sit here and force him to be on the computer all day long if he is not doing the work. These teachers need to get online and do the work with him.”
Mangini made a schedule in which his teachers met with him one-on-one virtually, which drastically improved his performance, but Mangini still calls the distance learning experience a “disaster.”
“The support just wasn’t there until I pushed for the support he needed for distance learning but also needs when he’s back at school,” Mangini said.
Verna Killian, whose son suffered a stroke at birth leaving him with physical, speech and learning challenges, said that educating her son at home has made her want to do more to support teachers.
“They do deserve more than people give them credit for, a raise for starters,” Killian said. “I have trouble with just my son. They handle over 20 kids, get them in routines and on task. I don’t know how they do it.”
During distance learning, the state department of education required that all special education services outlined in a child’s IEP be provided to the greatest extent possible in a format compatible with virtual learning. The proposed modified plan was documented by the IEP team on the “Student Continued Education Opportunity Plan” form which supplements but does not replace the child’s regular IEP.
For a student receiving specialized services, the form would list each service and the modified plan, as well as who is responsible for creating the plan. For example, the service could be “physical therapy” which would correspond to a goal number from the child’s regular IEP. The method of instruction could be “emails with exercise suggestions and one weekly Zoom meeting.” The person responsible for developing the plan is listed as the physical therapist, but what the form fails to reflect is that the burden falls on the parent to make it happen.
Making it happen is easier said than done. Ruscil said that even audio feedback on a video call with a teacher can upset her sons, making the well-intentioned session a bust.
“With sensory issues, if there’s a reverb, there’s an echo it can throw the entire thing off course just because of a sound,” Ruscil said. “One of them might scream and the other might get up and run away. To try and keep them seated myself is difficult.”
The disconnect for parents is that the state does not document what and how much was actually accomplished in the modified virtual format. Each service on the IEP may have a virtual counterpart, but parents question its effectiveness. According to parents, computer-based activities are a frustrating substitution for individualized instruction.
Those providing the virtual services know they aren’t perfect. At Clifford Beers Clinic in New Haven, Dr. Naomi Libby, a psychiatrist, said that working with kids with autism often requires hands-on support.
“It requires a moment-bymoment response to behavior,” Libby said. “That’s why those services were often done in the home. That has been much more difficult to do virtually. A lot of that has focused on parents and helping the parents address the behavior.”
Lubugo said that virtual education demands too much of parents.
“We’re not teachers, we are parents,” Lubugo said. “We can assist our children but when you ask us to start educating them and supplementing their education, we just don’t have the training for that.”