Monday, April 13, 2020

Disabled adults in group homes are at high risk for coronavirus: Alert! Alert!

This weekend, I read a deeply troubling article in The New York Times about disabled adults in group homes in New York, one of the states hit hardest by the pandemic. In one home in Bayville, 37 of 46 residents had tested positive for the coronavirus; two have died, and nine are still hospitalized. (And yes, I wondered about the photo in the article that shows several residents who likely do not give permission.)

As the parent of a teen with disability, one who may someday in a group home, I felt particularly horrified. (The photo above is a group home in our area that I parked outside of a couple of years ago, wondering if my boy might someday live there.) In our state, NJ, last week it was reported that twelve people with developmental disabilities who live in group homes and state-monitored facilities had died from Covid-19, and 87 more had tested positive.

All in all, reporter Danny Hakim noted, developmentally disabled people monitored in New York state were dying at a rate far higher than the general population. One study done by a consortium of private care providers indicated that residents of group homes and similar facilities in New York City were more than five times as likely as the general population to get the coronavirus. Five. Times. And ten percent of the homes' residents had coronavirus-ish symptoms but hadn't yet been tested.

Hakim reported that the state continued to send adults who were vulnerable to day programs even after bars and restaurants had been shuttered. The article also noted the challenges keeping people with intellectual disability isolated. "One of the individuals here is positive, and his behavior is to get up, to pace, and he wants to give me a hug, shake my hand," said one of the caregivers. "They have a hard time realizing that they need to be isolated, and the psychologists aren't coming out and talking to him."

Meanwhile, there's insufficient protective equipment for staffers at group homes and oxygen for residents in need. And there continues to be great concern about residents receiving adequate hospital care. Last week, I spoke with a longtime disability expert and advocate about the outrage of medical care rationing for people with disability. This week, Disability Rights New York filed a federal complaint claiming that New York's Ventilator Allocation Guidelines for a severe flu pandemic discriminate against people with preexisting conditions.

As a society, it is our responsibility to care for our most vulnerable. There's awareness out there that the elderly are at higher risk for coronavirus, and the domino deaths that have occurred in nursing homes. But who's thinking about the other vulnerable people in our population—severely disabled adults living in group homes? The ones who may not have the ability to speak up for themselves or, in the case of older residents, family to do it for them.

What can we, as a community, do? Speak up. Today, I wrote a message on a local Facebook board asking how our local group homes was doing and linking to The New York Times article. I also write our state representative, asking to make sure that people check in with local group homes to find out what their needs may be. You can find the contact info of your rep here—it takes just a couple of minutes to send a note. If you have other actionable ideas, please share.

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Thanks for sharing!

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