Raleigh, N.C. — A number of families with special-needs students are caught in a government loophole and can’t get in-home help as they try to navigate online-only learning with their children.
In normal times, their children are in school, getting intensely personal help in small classrooms. But with many school systems across North Carolina, including the largest ones in the Triangle, holding online-only classes, that’s happening through a computer screen now.
In normal times, the families can get federally funded waivers to hire in-home help when their children aren’t at school. But virtual learning counts as school, prohibiting parents from getting that help during school hours. Schools get federal funding for special-needs education, and in the U.S. government’s eyes, spending tax dollars on in-home help during the school day counts as double dipping.
“This money’s just sitting there,” said Jennifer Pfaltzgraff, executive director of The Arc of the Triangle and mom to a son with cerebral palsy.
“Why not, during a global pandemic, why not suspend that rule about double billing?” Pfaltzgraff said.
The state Department of Health and Human Services says it’s working on a solution, talking to the federal Centers for Medicare & Medicaid Services, which oversees the program. DHHS spokeswoman Kelly Haight Connor said the Innovations Waiver program has room for 13,138 people, and about 2,550 of them are under 22, which counts as school age.
Those numbers don’t include families on wait lists, and the programs often don’t have enough funding to serve everyone interested.
Haight Connor said Friday that the department has submitted a proposal to CMS that, “if approved, will result in some relief.”
“We are cautiously optimistic that CMS will approve this change,” she said in an email.
The CMS press office has not responded to WRAL News’ questions about the process, which were submitted Friday. Haight Connor said the state is “working closely with CMS to find a solution and we are committed to keeping families informed of the progress.”
“In the meantime, it is important to know that Innovations Waiver services and supports can be provided during the time that virtual or blended school is not in session,” she said.
There are also programs unaffected by the move to virtual school. Sarah Baker, a parent in Wake County, said she’s able to get in-home help during the school day through a program with different regulations.
“We are able during the day to have nursing help,” she said. “They’re not trained as teachers, but they’re trying their best … and his teachers are trying their best (online).”
Most Triangle school systems aren’t offering in-person services for special-needs students, other than for screening purposes. Online services are available, but Pfaltzgraff and other parents said they’re extremely difficult for non-verbal children and children with other disabilities.
Some parents in this community want desperately to return to in-person school. Others, whose children are at high risk for coronavirus complications, say they need to stay virtual. Some want help at home, others worry about the risks in bringing someone in.
Tara Deane, who has two adopted children with a range of issues, joined Republican elected officials in Raleigh last week for a press conference, calling for an immediate return to in-person classes. She said one of her children is scratching herself until she draws blood.
“They are completely isolated,” Deane said. “COVID isn’t killing my children right now, but they are dying inside.”
Pfaltzgraff said the focus shouldn’t simply be on schools but on the families who can’t get the help they need.
“It shouldn’t be the school system’s (responsibility), though it has become so,” she said.
Gov. Roy Cooper and DHHS Secretary Dr. Mandy Cohen said last week that they recognize the challenges special-needs families face.
“It’s one of the things that plays into a decision like this,” Cooper said, after announcing a plan to let elementary schools move to full in-person learning next month, if their district opts to. Families will still have an online option, the governor said.
Right now, systems are limited to online-only education or a blended model where students are in school buildings some times and doing virtual learning others. That landscape will likely shift over the next month as the governor’s latest mandates take effect.
Nash County Public Schools planned to move Monday to a blended model with some in-person learning, including for special-needs students who will be able to see “speech-language therapists, occupational therapists and/or physical therapists …. in a face-to-face setting” if families choose it, the system said.
Durham Public Schools offers special-needs programming only virtually, but officials said some students with disabilities are coming to their learning centers. These programs offer supervision while students take the regular virtual classes. They cost as much as $140 a week, but a system spokesman said there’s a sliding scale and that most students in the centers are attending free of charge.
Wake County schools are all virtual right now, including for special-needs students. The Board of Education plans to meet this week, though, to discuss next steps. The system may move to a blended model with some in-person instruction.
“For example, all students could receive some instruction on a three-week rotation,” the system told parents in a letter early this month. “By comparison, special education regional programs and pre-K through second grade could receive instruction every day if remaining students finished the semester remotely.”