Amid Covid-19, Parents of Special-Needs Kids Face a Dilemma

Bella, 11, sits in her chair, her left hand tapping a yellow joystick switch. She is animated, her blue eyes sparkling, her wavy hair bouncing as she moves her head. Yesterday, she went back to school for the first time, after five months of lockdown. She has a lot to say — talking about music, her brother’s baseball practice, her red chair at school. After her speech therapy over Zoom, Bella tells her mom, “I feel is happy.”

Bella has a condition known as GM3 Sythase Deficiency, a disorder that causes her body to be unable to make the enzyme GM3, which is important for neurological development. As a result, Bella has epilepsy, hypotonia (or low muscle tone), cortical visual impairment (visual impairment caused by the brain), and feeding intolerance, which makes her dependent on IV nutrition. She uses a speech-generating device to communicate, her word selection driven by the

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A special-needs student was struggling to learn online. The whole neighborhood contributed to her schoolhouse.

That was not true just a few months earlier. Throughout the spring, Ixel struggled to learn online at a tiny kitchen table inside her parents’ 850-square-foot Northern Virginia home, while Mom and Dad worked nearby. The second-grader’s learning disability makes it difficult to focus, so she got almost nothing done, despite the best efforts of her Arlington Public Schools teachers — and neither did her parents.

But now, Ixel was sitting in a miniature green-and-white wooden schoolhouse, set on cinder blocks just to the side of the McIntires’ home. Her school-provided iPad rested on a desk painted hot pink.

Her long red hair, split into two high ponytails, glimmered in the light that filtered through the rainbow-colored, semitransparent ceiling. In one corner sat a child-sized stuffed teddy bear: Ixel’s reading nook.

The shed — which Ixel calls her “Rainbow Elementary School” — was the result of months of labor by

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‘Double billing’ loophole makes virtual school even harder for special-needs families ::

— 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

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Special-needs students struggle to adapt to online learning

For sixth-grader Santiago Casas, who has autism and attention deficit hyperactivity disorder, going to school means staying home and staring at a computer for six hours.

The screen, like a drawbridge stuck in the up position, has left him stranded, cut off from the cognitive and social nurturing he received in the classroom.

He has trouble with organization, so clicking between online calendars, messages, documents and assignments for six advanced classes is “like negotiating a maze,” said his mother. He has trouble concentrating, so sitting still through the 115-minute periods of his new online block schedule at Glades Middle School on two-dimensional Zoom and Teams meeting platforms is “like torture,” she said.

Santiago used to love school. Now he hates it. So do his parents and teachers. Remote learning, a disruption to everyone’s education during the coronavirus pandemic, creates an even higher barrier for students with special physical, emotional and

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