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Stories and information in our region on the COVID-19 pandemic.

As Early Intervention Goes Virtual, Families And Therapists Improvise

WXXI News and Step by Step Developmental Services

India Hedman’s daughter, Kaia, is sleeping. It’s Wednesday afternoon, and the 14-month old is down for a nap.

Hedman picks her up out of her crib. Kaia’s head lolls against her mom’s shoulder. Her eyes stay closed.

“When she sleeps, she sleeps,” Hedman said.

A couple of hours ago, Kaia, who has Down Syndrome, finished what Hedman called a “pretty good, pretty intense” therapy session with Janet Rosenberg, a physical therapist at Step by Step Developmental Services.

But this therapy session wasn’t in Rosenberg’s office. In fact, the therapist wasn’t even in the room.

Distancing measures in place to slow the spread of COVID-19 have pushed early intervention services like Kaia’s physical therapy – required by both state and federal law for children under 3 years-old – into the virtual realm.

Normally, the state health department said, early intervention must happen in person. Under Gov. Andrew Cuomo’s emergency declaration, though, the state health department is authorizing teletherapy.

Hedman said that means she finds herself needing to manage some of the therapeutic practices that she usually leaves to Rosenberg’s expertise.

“I’m not a physical therapist. I don’t know exactly how to position my hands, and it’s hard for Janet to see that over the computer,” she said.

Rosenberg said she uses a doll to show parents like Hedman what she wants them to do.

“When I’m handling the doll, it’s like I’m actually handling the child, and I’ll put toys around to show a family how to position toys to motivate their child to move.”

Hedman said Kaia’s early intervention services include the physical therapy with Rosenberg, as well as special education and speech therapy.

Kaia’s speech therapy has ended for now, Hedman said, as her usual therapist isn’t doing virtual appointments. The state health department said an unknown number of children in early intervention have stopped getting some of the services they’re owed, either because the therapist or the child is unable to continue them virtually.

“Service delivery through teletherapy involves an audio and visual link and active participation of the parent/caregiver, which may not be feasible in every circumstance,” the department said.

Brigit Hurley, who directs advocacy at the Rochester nonprofit The Children’s Agenda, agreed that some children don’t have living situations that are conducive to virtual therapy sessions.

With schools closed, many families have multiple young children at home vying for attention. Some don’t have reliable internet service or devices that allow video chats.

Hurley said it makes sense to allow teletherapy during the pandemic, but she worries about what those children are missing.

“Honestly, children at that age are developing brain connections and brain architecture at such a rapid pace that I’m concerned at how much they’re going to be behind and whether there’s going to be an ability to restore that development,” she said.

Heather Hanson, the chief operating officer at Step by Step, said her therapists have those concerns, too, but they’ve also found some benefits to teletherapy.

One is that therapists can hold appointments outside of regular office hours. Another is that parents feel empowered when, pressed into roles they don’t normally occupy, they find themselves managing some of the strategies that are usually only used by therapists.

“When a parent sees that they can support their child in this new way, that’s a really gratifying experience,” Hanson said.

The state health department said it had been studying telehealth for early intervention even before the pandemic. A spokesperson for the department said it’s following along closely to see how well virtual services work for families during the emergency.

This story is reported from WXXI’s Inclusion Desk.

Brett is the health reporter and a producer at WXXI News. He has a master’s degree from the City University of New York Graduate School of Journalism and before landing at WXXI, he was an intern at WNYC and with Ian Urbina of the New York Times. He also produced freelance reporting work focused on health and science in New York City. Brett grew up in Bremerton, Washington, and holds a bachelor’s degree from Willamette University in Salem, Oregon.
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