From the newsletter.
I usually send out on a newsletter on Fridays, but yesterday was a crappy day, and it just didn’t happen. Instead of holding out until next Friday, I think I do one today. Stuck inside because of rain and the pandemic, I want to test the wheels on a new newsletter system (Hello, Substack!)
For the past few weeks, I’ve been interviewing teachers, therapists, advocates and parents for a couple of articles about how kids with disabilities are faring these days. That’s on top of the informal conversations that I have every day with my gang of special-education-parent friends.
Honestly, it’s been rough. I have never worked on any article, where so many people end up crying. It’s hard to shake off all the sadness and go about my life, when I step away from the computer. The good news is that I have enough information to piece together the puzzle pieces for at least one article next week, and I can take a break from hearing hard stories.
I think I’ll share one story with you. Nice of me, right? You probably just want to do some Christmas shopping, and I’m going to bum you out. Ha. I’m fun like that.
I first met Jess this summer, when I started going to a physical therapy center in my town for a boring, middle-aged woman injury. While she’s pulling and pushing my shoulder until the muscle knot eases, she tells me about her other job — working as a physical therapist for the state department of Early Intervention.
Every year, Early Intervention dispatches hundreds of therapists into the homes of children, some as young as six months old, with autism, genetic mutations, cerebral palsy, and other rare challenges. For a sliding fee, this state-run department provides essential services for children with disabilities, until they turn age three when the school districts take over.
As a physical therapist, Jess’s job is to help these children crawl, walk, and gain control of wayward limbs. It’s a really hands-on job that has taken years of schooling and experience to perfect. This spring, she was only able to provide these services through Zoom and FaceTime calls, due to COVID restrictions, which pushed the limits of her creativity and families’ resourcefulness.
Rather than directly demonstrating motions and exercises, and guiding parents about how much pressure to place on a child’s body, Jess had to give verbal instructions, which was especially challenging for families who were not fluent in English. Often, two parents were needed to be available during the day; one had to hold the cell phone to show Jess how the child was walking across the floor and another parent had to physically support the child. Parents had to have the right technology; if they only had a desktop computer, it was difficult to show her how a child was walking across the room.
Jess said, “I truly want to help the children and be there for them. And I feel like I’m not quite able to do that as successfully remotely.”
Finding ways to demonstrate exercises pushed Jess’s creativity to its limits. During one session when she was teaching a child how to walk upstairs, she had to take her laptop outside her apartment building to find a set of stairs and position her computer far enough away, so the child and the parent could watch her walk up and down stairs. Even with all that thought and effort, she struggled.
With the rising COVID infection rates, Jess fears the state might shut down in-person therapy again leaving thousands of young children without adequate care.
Telehealth was so difficult that one of Jess’s clients dropped out after six sessions. Another client lost seven months of strengthening, and as a result, was having trouble standing, because his hip muscles were too tight. Now that she’s back to working in homes, with some basic COVID precautions, things are nearly back to normal, but if services shut down again because of surging COVID rates, therapists like Jess will go back to teaching kids to walk through the Internet. Jess said that if that happens, many of her clients will drop out of the program completely.
Jess said that the physical exercises that she does with the little kids helps set the stage for them to sit properly at a desk in the future and hold a pencil. “And when you miss that timeframe, you can’t go backwards. You don’t get that neuroplasticity back,” Jess said.
The tragedy that Jess was permitted by the state to stretch out the muscles of a middle aged woman with a boring middle-aged ailment, but is not able to help a two-year old with muscular dystrophy in his home, is not lost on either of us.
Apt. 11d 
We sent our youngest to an in-person therapy center 6-9 hours a week all summer despite the summer COVID surge here because it was clear that a) she needed to go and b) that our family needed for her to go. The center has had three or so minor go-rounds with COVID in the center since this summer, but we’ve rolled the dice on this. I did feel some qualms when working with a very pregnant staffer from there and was delighted for her when she finally went off to maternity leave.
The center sends a therapist to our youngest’s school 6 hours a week to help out in the classroom, which has been working well. They were going to have a Halloween party, but thought better of it, and then delivered a Halloween party-in-a-box to our door, via a staffer riding an inflatable dinosaur. It was adorable.
(This therapy is paid for by ourselves and our insurance company.)
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Well, thank god the insurance company is paying for it. I’ve only had 50/50 luck getting insurance to cover autism therapy. I still don’t know if they’re going to pay for our trip to Yale for an evaluation. They said no the first time, but haven’t heard back from the appeal process yet.
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Laura wrote, “Well, thank god the insurance company is paying for it.”
Yep.
3 copays a week is pretty stiff, but she’s having a fabulous 2nd year year after a cruddy 1st grade year. She’s crushing her spelling tests and math tests this year. She’s also got a little recess club where she and a couple of chums LARP stories of their own composition.
I expect we’ll be paying $360 a month in copays for the foreseeable future, on top of private school tuition.
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I agree that your description of offering physical therapy sounds like OB’s guiding people through home births through zoom and that we cannot just shut down early childhood intervention services if cases get bad again. We need to treat intervention like the essential services they are and offer them in the same conditions we offer other necessary medical care.
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bj said, “We need to treat intervention like the essential services they are and offer them in the same conditions we offer other necessary medical care.”
Yep.
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I’d agree, too. But I think it’s unlikely to happen (or at least, only for people who are getting these services through private/health insurance channels, not the Govt)
Our lockdown experience in NZ was that these kind of one-on-one, hands-on, in-person services were the *last* ones to get underway again, and the first ones to be pulled when the infection levels went up again, and we went into modified lockdown.
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I’m sorry that NJ is having such a terrible time with EI. My son received PT services through EI in NYC and it has been nothing but a positive experience during the pandemic. Service was suspended for about 2 weeks in late March but started up again in mid April with online therapy. It was less than ideal but the therapist did as good a job as possible. We were given the option to go back to in person therapy in June but decided it was too risky and opted to continue with zoom. If our needs were more severe we might have chosen to return to in person. Obviously the disruption and switch to online made it harder for everyone involved, but given how NYC was affected and the incredible risk of therapists doing multiple in-home visits where they are exposed to dozens of people a day in close proximity indoor settings, I think suspending in person was the only responsible option in the Spring. If we had chosen to go back in person, we would have had a total of 2 weeks suspended and about 2 months online, which seems not terrible given the circumstances. I agree that EI should be considered an essential service and that there should be resources devoted to making it safer, perhaps having children go to centers rather than therapists go to individual homes, many of which are crowded apartments.
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