Patterico's Pontifications

4/10/2020

COVID-19: Developmentally Disabled Group Home Residents Particularly Vulnerable

Filed under: General — Dana @ 11:43 am



[guest post by Dana]

A heartbreaking reality of the pandemic:

The call came on March 24. Bob McGuire, the executive director of CP Nassau, a nonprofit group that cares for the developmentally disabled, received a report from a four-story, colonnaded building in Bayville, N.Y., that houses several dozen residents with severe disabilities ranging from cerebral palsy to autism. For many of them, discussions of social distancing or hand washing are moot.

“Bob, we’re starting to see symptoms,” Mr. McGuire was told.

Fevers were spreading. Within 24 hours, 10 residents were taken to the hospital. Now, little more than two weeks later, 37 of the home’s 46 residents have tested positive for the coronavirus. Two are dead; nine remain hospitalized. At least eight members of the staff have tested positive as well.

“Forgive me if I get emotional,” Mr. McGuire said in an interview, choking up. “People discount people with disabilities and presume they understand them when they don’t know them. They think their lives are not worth the same as yours or mine, and that’s just not true.”

Given the particular vulnerability of the developmentally disabled living in group homes, New York is seeing an increase in positive tests, and higher rates of death than in the general population:

As of Monday, 1,100 of the 140,000 developmentally disabled people monitored by the state had tested positive for the virus, state officials said. One hundred five had died — a rate, far higher than in the general population, that echoes the toll in some nursing homes.

Separately, a study by a large consortium of private service providers found that residents of group homes and similar facilities in New York City and surrounding areas were 5.34 times more likely than the general population to develop Covid-19 and 4.86 times more likely to die from it. What’s more, nearly 10 percent of the homes’ residents were displaying Covid-like symptoms but had not yet been tested, according to the consortium, New York Disability Advocates.

Staff members are also having a tough time:

On Staten Island, three state employees who are direct caregivers said 50 of their roughly 600 colleagues in the borough had tested positive. They described the challenges they faced on the job.

“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, asking that his name not be used because he was not authorized to speak.

“They have a hard time realizing that they need to be isolated, and the psychologists aren’t coming out and talking to him,” he said. “We don’t have training for this. We’re just learning on the fly.”

Other homes in his network have been harder hit, Mr. Damiani said, particularly two housing the most fragile residents. Three have died at a home in Jamaica, Queens, and two at a facility in East Harlem.

“We still find it hard to get tests for our population,” he said. Protective equipment was also “very difficult to get,” he said, though that situation was improving. Four staff members from his network have died.

I so wish Bob McGuire wasn’t correct in saying that there are people who think that the lives of the developmentally disabled “are not worth the same as yours or mine,” but it’s always been that way.

Eh, no matter. The special needs group home residents who have died as a result of the virus were on their last legs anyway, right??

God bless the group home workers who continue to show up each day and do their best for these vulnerable Americans.

–Dana

49 Responses to “COVID-19: Developmentally Disabled Group Home Residents Particularly Vulnerable”

  1. Make sure to click the NYT link at the top of the post. There is an powerful photograph that deserves your consideration.

    Dana (0feb77)

  2. Let’s take ’em all and just lock ’em away. That’s worked so well for the rest of the populace, hasn’t it?/

    Gryph (08c844)

  3. Many nursing homes for the aged are getting slammed even harder, and those folks are even higher on the risk list.

    Not only having to deal with the safety measures but now also dealing with residents who have a hard enuf time understanding the menu, much less why their family is no longer visiting.

    The healthcare and other workers who show up every day in high risk jobs deserve some sort of huge bonus
    _

    harkin (b64479)

  4. When people say that it’s only old people dying, well there’s dying and then there’s dying alone with a tube stuck down your throat, and your spouse, your family, your friends not allowed to come near you. People can be very careless with other people’s lives.

    Victor (4355e3)

  5. Well said, Victor.

    Dana (0feb77)

  6. 4. Quite well-said, Victor. But as long as “social distancing” is a de-facto government diktat, that’s the way it shall remain. But hey, flatten the curve, amiright?/

    Gryph (08c844)

  7. …as long as “social distancing” is a de-facto government diktat, that’s the way it shall remain. But hey, flatten the curve, amiright?/

    Seldom.

    But if you think medicos are even CLOSE to ending restrictions on visitors regardless of what civil authorities say, you are dreaming.

    Some people are responsible.

    Ragspierre (d9bec9)

  8. I’d suspect that many special needs people are more prone to obesity, and that many have underlying health issues. This is also true of poor people in general. And these are exactly the groups – along with the very old – that have gotten hit hardest.

    rcocean (1a839e)

  9. Oh boy, this is indeed a heartbreaking development and a problem that is going to be really really challenging to negotiate. The professionals who continue to show up to work at these group homes certainly are acting heroically.

    JVW (54fd0b)

  10. 8. Quite frequently, underlying health issues are part of developmental disability syndromes.
    For instance, individuals with Down Syndrome frequently require multiple open-heart surgeries, and it is also a significant risk factor for early-onset Alzheimer’s.

    Gryph (08c844)

  11. 7. If “responsible” means that developmentally disabled individuals who want to see their family can’t because the bureaucrats won’t let them, you’re missing the whole point of responsibility.

    Gryph (08c844)

  12. God bless the group home workers who continue to show up each day and do their best for these vulnerable Americans.

    Well, yes, but how did the virus get inside the home? I looked to see if the residents were allowed to go out on their own, but it doesn’t seem likely. So a worker or a visitor brought it in. I hope that those who continue to show up are not doing so while sick, and I hope that in their off hours they realize the import of THEIR behavior in avoiding contagion.

    This is the same thing as the assisted living homes. It can be a visitor, but it seems always to trace back to an employee. There’s always someone who thinks he has a God-given right to go clubbing in his off hours.

    I recall AIDS Patient Zero was an airline steward who, after being informed that he was sick and contagious, refused to modify his lifestyle and continued to have promiscuous sex in bathhouses.

    Kevin M (ab1c11)

  13. When people say that it’s only old people dying, well there’s dying and then there’s dying alone with a tube stuck down your throat, and your spouse, your family, your friends not allowed to come near you. People can be very careless with other people’s lives.

    And if 60 is old, then 40 is the new 70. It really doesn’t matter how old you are to be dying alone with a tube stuck down your throat.

    Kevin M (ab1c11)

  14. From the article: “A real policy prohibiting discrimination in the allocation of ventilators and all health care must be enacted immediately…”

    But when you must pick and choose it becomes de facto “discrimination.” The main requirement is that the decision must not be made illogically or through favoritism or bias. But in a regime that might score retired overweight smokers lower than young female engineer, judgements about the ives you are saving must be made.

    Is a retired overweight smoker less of a human than a young female engineer? Or is that just an unfair appeal? We all know how we’d decide if we had to decide (and flipping a coin is a puerile abdication). Why pretend that these innocents are more deserving than other innocents? Or in some cases equally deserving.

    THIS IS WHY we bend the curve.

    Kevin M (ab1c11)

  15. If “responsible” means that developmentally disabled individuals who want to see their family can’t because the bureaucrats won’t let them, you’re missing the whole point of responsibility.

    Really?

    How ’bout if anybody in a medical setting can’t have visitors because that visitor might kill them or others? Or just give them a virus that will result in them being debilitated for life?

    You brag about attending nursing courses. Ever hear the term “standard of care”? There’s a new one now. And those with the responsibility for caring for the people in their facilities WILL be applying it, regardless of what some insist they should or should not do.

    When you stand in their shoes, let us know.

    Ragspierre (d9bec9)

  16. The VA is providing tele-visits for its in-facility patients. That will get to be common.

    Ragspierre (d9bec9)

  17. The report mentions that the homes were slow to isolate, and continued day trips with residents after businesses had already closed. So, it’s possible that the patients themselves could have been in contact with other individuals not associated with the home (including health care workers). But the workers seem like the most likely transmitteres of the virus. And they may have been asymptomatic:

    In interviews, a number of parents and advocates expressed dismay that the state had not moved more quickly to curtail daily excursions for residents, which continued past the middle of March. On March 16, in internal email traffic obtained by The New York Times, a state nurse expressed alarm to the official in charge of Albany-area group homes.

    “I have concerns about many of the individuals on my caseload being exposed on the buses and at their day programs,” the nurse wrote. “Are we looking at keeping people home? I was surprised that everyone went to program today as normal!”

    One of the most outspoken advocates in the state, Michael Carey, whose autistic son was killed in state care in 2007, said the state “unfathomably continued to send vulnerable and elderly residents to day programs” after bars and restaurants had closed.

    Dana (0feb77)

  18. @ Kevin,

    But when you must pick and choose it becomes de facto “discrimination.” The main requirement is that the decision must not be made illogically or through favoritism or bias. But in a regime that might score retired overweight smokers lower than young female engineer, judgements about the ives you are saving must be made.

    Is a retired overweight smoker less of a human than a young female engineer? Or is that just an unfair appeal? We all know how we’d decide if we had to decide (and flipping a coin is a puerile abdication). Why pretend that these innocents are more deserving than other innocents? Or in some cases equally deserving.

    So where do the developmentally disabled fall into the equation, Kevin M? After all, they didn’t *choose* to be born with special needs.

    Dana (0feb77)

  19. One of the most outspoken advocates in the state, Michael Carey, whose autistic son was killed in state care in 2007, said the state “unfathomably continued to send vulnerable and elderly residents to day programs” after bars and restaurants had closed.

    But I’m being told that Governor Cuomo has done such a magnificently flawless job with this crisis that I am supposed to ignore President Trump and long for the day when President Cuomo makes everything better. Now you want to tell me that New York state might have mishandled this, thus causing the death of some of its most vulnerable residents?

    JVW (54fd0b)

  20. “ AIDS Patient Zero was an airline steward who, after being informed that he was sick and contagious, refused to modify his lifestyle and continued to have promiscuous sex in bathhouses.”

    – Kevin M

    “AIDS Patient Zero”

    Leviticus (c68ea0)

  21. “ It makes a very interesting point about Patient Zero, who has become a talking point in the origins of Aids, yet no matter how attractive a narrative it is, it doesn’t have any scientific basis and it’s really unfortunate that this person was identified.”

    Leviticus (c68ea0)

  22. 14… Does teh “M” stand for Mengele?

    Colonel Haiku (2601c0)

  23. Just kidding

    Colonel Haiku (2601c0)

  24. The VA is providing tele-visits for its in-facility patients. That will get to be common.

    Medicare, which had been an outlier among insurers, also allows full telemedicine coverage anywhere that takes Medicare. Previously they only allowed telemedicine charges in remote areas where the local sawbones had to consult a specialist.

    Kevin M (ab1c11)

  25. Leviticus (c68ea0) — 4/10/2020 @ 5:02 pm

    So, he was not the first ever, but the first to be diagnosed in the US, and at minimum one of the first US carriers. None of this changes the fact of his willful behavior in spreading the disease, which was the point of the reference.

    Kevin M (ab1c11)

  26. In fact, I can’t see why you brought it up since it has no impact on the discussion. Mr Dugas willfully infected scores, if not hundreds, of people for no better reason than his own personal gratification. I’m not saying that anyone is doing this today, but the willfulness that Dugas displayed may have lead to any number of infections by caregivers who did not understand, or care about, their responsibilities.

    Kevin M (ab1c11)

  27. Well said Kevin.

    NJRob (4d595c)

  28. When I referred to tele-visits at the VA I was talking about family, friends, that kinda thing.

    The VA is encouraging alllll services that can be done over the wire to be done that way…even their mental health support.

    Ragspierre (d9bec9)

  29. So where do the developmentally disabled fall into the equation, Kevin M? After all, they didn’t *choose* to be born with special needs.

    Gee, I am glad it is not my job to make those decisons, but I could fairly ask “Where do non-disabled people fall into that equation? They didn’t ask not to be developmentally disabled.”

    Triage is a TERRIBLE TERRIBLE thing. Did a stage-4 breast cancer patient choose breast cancer? No, but she’s not going to score as highly as a 23yo health doctoral candidate. I suspect that the individuals here had better hope like the dickens that they are not in such a competition. I would be aghast if some law said they they had precedence over everyone else because someone cannot get their heart out of what MUST be a heartless decision. If personal feelings get in the way, then the pretty girl gets it over the ugly guy, and that’s bad, too.

    Note that I, 66 and a former smoker (and former other things), who had asthma before he ever picked up a cigarette, would not be at the top of the list. That 23yo healthy doctoral candidate gets if before I do.

    We went through this lockdown and curve-bending so that we would not HAVE to make those choices. And frankly, the boob in charge of NYC should be taken out and shot for his failures. Even Trump did a much better job.

    Kevin M (ab1c11)

  30. When I referred to tele-visits at the VA I was talking about family, friends, that kinda thing.

    As they should. As we are doing, too. Any family that gathers for Easter, instead of using something like Zoom or Skype, is being really really stupid. IF they think that God is going to reach down and protect them, they need to explain WWII to me.

    Kevin M (ab1c11)

  31. I do wish that the State had the same liability exposure that private business in the same line of work would have.

    I’m sure that they took these clients of theirs to day care because 1) it was the normal procedure and no one had told them to change it, 2) they couldn’t get in trouble for following procedure, 3) managing the developmentally disabled is a task and a half.

    Kevin M (ab1c11)

  32. #28. And clearly, I misread.

    Kevin M (ab1c11)

  33. No biggie.

    Ragspierre (d9bec9)

  34. Gee whiz can’t see why anyone brought up the notion that my premise of “PATIENT ZERO OMG !!!???!!!l might be off base how dare you sir??!!

    How bout this: maybe the guy had no f’ckin idea of the true severity of what he was infected with – like everyone else in the country. Maybe he had no idea.

    Leviticus (c68ea0)

  35. This will be our world war II. Hopefully not our civil war. “This is the time that try men’s (and women’s) souls!” Glad to see national media finally recognizing our great truckers keeping the food and medical supplies moving. Instead of bach how about “6 days on the road” dave duly.

    rota (c077c0)

  36. 3 weeks ago they closed down an old folks home here on the cape and no one is allowed in except the workers. No one has caught the china flu. Hats off to all those taking care of them.

    mg (8cbc69)

  37. How bout this: maybe the guy had no f’ckin idea of the true severity of what he was infected with – like everyone else in the country. Maybe he had no idea.

    The PBS documentary I saw that focused on the start of AIDS clearly said that it was explained to him that he appeared very ill and that he would infect others, but he refused to consider using a condom, let alone being abstinent. He was, they said, adamant about his “right” to have sex as he pleased. I guess they could have been wrong about that, too, but they seemed to be quoting the doctors that treated him.

    Kevin M (ab1c11)

  38. Hats off to all those taking care of them.

    Definitely, since they have to be extra careful even on their own time. It takes character to suspend your own life for the benefit of others. It’s rarer to see it these days.

    Kevin M (ab1c11)

  39. My nurse daughter told me last night of an old guy who was scheduled to have some elective surgery. He shows up at the hospital and is screened at the entrance. He presents with a fever, so he’s told to go away.

    Instead, he goes to another entrance and walks in, telling the admission people he was told to come there. He’s admitted to pre-op were at least a half-dozen other patients are, several nurses, and the anesthesiologist and surgeon. He’s finally discovered, but only after potentially infecting about 50 people directly and once-removed.

    He was sent away. I’d have had him arrested for criminal trespass at least.

    Ragspierre (d9bec9)

  40. OTOH:

    WSJ: Coronavirus Strikes at Least 2,100 Senior Facilities Across U.S., Killing 2,300 People (no paywall)

    The new coronavirus has hit more than 2,100 nursing homes and other senior facilities around the U.S., killing over 2,300 people, according to a survey by The Wall Street Journal, an indication the pandemic’s toll in these facilities has been greater than the federal government has reported.

    Nursing homes and other senior-living facilities in the U.S. have reported at least 15,473 coronavirus cases, according to data collected from 37 states that responded to requests from the Journal, which contacted all 50 health departments.

    Families with mothers and fathers in nursing homes, or preparing to place a relative in a facility, have wanted to know the risks their loved ones face, advocates say. Yet disclosure practices vary, and there often isn’t information publicly available about individual facilities’ coronavirus cases.

    The closest the federal government came to detailing the virus’s full impact on nursing homes came last month, when the Centers for Disease Control and Prevention reported there had been more than 400 long-term care facilities with coronavirus cases in the U.S. as of March 27.

    The Journal’s figures suggest the virus’s impact in one of the country’s most vulnerable populations is worse than known, despite efforts to protect the residents. And the numbers almost certainly understate the extent of the epidemic. Not all states provided data, while others didn’t offer a comprehensive picture.

    But read the whole thing.

    Kevin M (ab1c11)

  41. And worse:

    NYT: Nearly 2,000 Dead as Coronavirus Ravages Nursing Homes in N.Y. Region

    At Crown Heights Center for Nursing and Rehabilitation in Brooklyn, workers said they had to convert a room into a makeshift morgue after more than 15 residents died of the coronavirus, and funeral homes could not handle all the bodies.

    At Elizabeth Nursing and Rehabilitation Center in New Jersey, 19 deaths have been linked to the virus; of the 54 residents who remain, 44 are sick.

    After 13 people died in an outbreak at the New Jersey Veterans Home in Paramus, the governor called in 40 combat medics from the National Guard.

    In Manhattan, two women who met during visits to the Upper East Side Rehabilitation and Nursing Center felt helpless while their mothers died of the virus within minutes of each other. Both had been unable to see their mothers for weeks.

    The virus has perhaps been cruelest at nursing homes and other facilities for older people, where a combination of factors — an aging or frail population, chronic understaffing, shortages of protective gear and constant physical contact between workers and residents — has hastened its spread.

    In all, nearly 2,000 residents of nursing homes have died in the outbreak in the region, and thousands of other residents are sick.

    As of Friday, more than half of New York’s 613 licensed nursing homes had reported coronavirus infections, with 4,630 total positive cases and 1,439 deaths, officials said.

    In New Jersey, nursing homes had been linked to 252 virus-related deaths, more than 90 of them in the past two days. The outbreak has now affected at least 70 percent of the state’s long-term care centers.

    And read the whole thing here too.

    Kevin M (ab1c11)

  42. And the hits just keep coming:

    WaPo: Anguished nurses say Pennsylvania hospital risked infecting cancer patients, babies and staff

    The nurse was pregnant — and worried. But in mid-March, early in the covid-19 crisis, a manager at Moses Taylor Hospital in Scranton, Pa., assured her she would not be sent to the floor for patients infected with the deadly virus. The risks for expectant mothers were too uncertain.

    Two days later, she says, the administration changed course, saying the hospital needed “all hands on deck.” The pregnant nurse said she was sent back and forth between the “covid floor” and the neonatal intensive care unit, known as the NICU, where she normally treated vulnerable newborns and recovering mothers.

    It wasn’t just her baby she was worried about, she said, but the immunocompromised newborns and mothers who she was treating without informing them that she was also working on the covid floor. Even as she cared for patients symptomatic of covid-19, administrators provided her with crucial protective gear only after tests came back positive, usually several days after she first attended to the infected patients.

    Kevin M (ab1c11)

  43. My impression of triaging is different than yours, Kevin M. I thought decisions are made on how sick they are, not their perceived value to society. It is true that many impaired people may have DNRs and that will be a factor, too, but the main issue is how treatable they are, not how valuable (unless the health care system gets overwhelmed like in Italy — maybe you meant that?).

    DRJ (15874d)

  44. I wrote a post about the ethics of health care rationing, and discussed a nationwide conference call of healthcare workers coming up with a plan necessary when, and if, the U.S. health care system becomes overwhelmed. The primary concern is, what do they do when there aren’t enough ventilators.

    Dana (0feb77)

  45. If the severity of the condition is equal, and there are limited medical resources, you give priority to the person who has the better chance of survival with treatment. That’s basic ER triage, so you only lose one instead of two.

    But I don’t know why you keep bringing up smokers. Smokers had a better chance, I’m told, with SARS Co-V 2005 because the virus attached to healthy, differentiated epithelium but not to undifferentiated (healing) epithelium. No, please do not go running to the 7-11 for a pack of cigarettes. It’s too late for you.

    nk (1d9030)

  46. There’s a point of sanity somewhere between ‘closing the bath houses is discrimination’ and ‘if you visit your neighbor we’ll arrest you’.
    _

    harkin (b64479)

  47. Welcome to the law, harkin. It is often about balance.

    DRJ (15874d)

  48. > how treatable they are

    i would anticipate the question as being more: “who is most likely to survive and recover from treatments with the minimal risk of complications that we don’t have resources to deal with”.

    to the extent that developmental disability is often correlated with other physical health problems, this is going to put a lot of developmentally disabled people further behind in the triage queue, not because of value-to-society judgments but because of likelihood-of-successful-treatment-with-minimal-complications judgments.

    aphrael (7962af)

  49. Currently at 49 and hopefully soon no longer: begone, foul spammer.

    aphrael (7962af)


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