[community] Fwd: ‘It’s Hit Our Front Door’: Homes for the Disabled See a Surge of Covid-19 - The New York Times

Cybele S cybele.sack at gmail.com
Thu Apr 9 17:09:28 UTC 2020


https://publicintegrity.org/health/coronavirus-and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of-the-line-for-ventilators?fbclid=IwAR3ZnQ0VQxCmTTUtS8D_qCZ8tBM4uhwuR76NR5yVBB7tMeXaC4Lc_yb0AO8


On Thu, Apr 9, 2020 at 12:45 PM Jutta Treviranus <jtreviranus at ocadu.ca>
wrote:

> This is on all of us...
>
>
> https://www.nytimes.com/2020/04/08/nyregion/coronavirus-disabilities-group-homes.html?action=click&module=Top%20Stories&pgtype=Homepage
>
> ‘It’s Hit Our Front Door’: Homes for the Disabled See a Surge of Covid-19
> By Danny Hakim<https://www.nytimes.com/by/danny-hakim>
> Updated 6:56 p.m. ET
> [A group home in Bayville, N.Y., for people with disabilities. By
> Wednesday, 37 of the home’s 46 residents had tested positive for the
> coronavirus.]
> A group home in Bayville, N.Y., for people with disabilities. By
> Wednesday, 37 of the home’s 46 residents had tested positive for the
> coronavirus.Johnny Milano for The New York Times
>
> 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.”
>
> As the coronavirus preys on the most vulnerable, it is taking root in New
> York’s sprawling network of group homes for people with special needs.
>
> 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.
>
> Trouble throughout the New York City region — and, to a lesser extent, the
> state — was revealed in interviews with caregivers, parents, advocates and
> senior officials.
>
> In Brooklyn, two parents of adult children in a group home said they were
> unnerved after another resident died in a suspected coronavirus case. “If
> it is the virus, what the hell are we going to do?” one of them said, while
> adding that the staff “deserve a lot of credit” for showing up.
>
> 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.”
>
> In Manhattan, at the Lexington Parc condominium on East 30th Street,
> ambulances arrived on three successive days, twice taking away residents of
> a group home operated in part of the building.
>
> Lawrence Smiley, the building’s longtime managing agent, expressed
> frustration that he had not received more information from the organization
> running the home.
>
> “They’ve refused to tell us anything,” he said, then added: “I’m a
> realist. Covid is all over the place.”
>
> Marco R. Damiani, the chief executive of AHRC New York City, which runs
> the group home and is one of the state’s largest private service providers,
> said one of the residents had tested positive for coronavirus, while “the
> other is back home — it wasn’t Covid-related.”
>
> 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.
>
> Jennifer O’Sullivan, a spokeswoman for the Office for People with
> Developmental Disabilities, the state agency overseeing the residences,
> said in a statement that it had “activated our emergency response team to
> closely monitor all reports of possible contact within our system across
> the state.”
>
> “All staff are fully trained on infection-control practices,” she said,
> and the agency “has released guidance to staff and voluntary provider
> agencies regarding visitation and quarantine protocols at our facilities.”
>
> New York’s system of care for the developmentally disabled has become
> increasingly decentralized in the decades since scandalous conditions<
> https://www.nytimes.com/2020/02/21/nyregion/willowbrook-state-school-staten-island.html>
> were revealed at the Willowbrook State School, a Staten Island warehouse
> for thousands of residents. While the move toward smaller settings has
> probably been helpful in averting even wider spread of the virus, the
> state’s oversight has remained a continuing<
> https://www.nytimes.com/2019/06/09/nyregion/new-york-group-home-abuse.html>
> subject of scrutiny and criticism<
> http://archive.nytimes.com/www.nytimes.com/interactive/nyregion/abused-and-used-series-page.html>
> over the years.
>
> 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<
> https://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html>
> in 2007, said the state “unfathomably continued to send vulnerable and
> elderly residents to day programs” after bars and restaurants had closed.
>
> Some advocates also worry that residents may not receive the best hospital
> care. This week, a leading oversight organization, Disability Rights New
> York, filed a federal complaint<
> https://www.documentcloud.org/documents/6825213-2020-04-03-Ventilator-Rationioning-OCR-Complaint.html>
> against the administration of Gov. Andrew M. Cuomo, claiming that state
> policies treat the developmentally disabled as second-class citizens who
> will be less likely to get access to ventilators, should there be a
> shortage. None has been reported, and state officials say new
> hospitalizations have been declining. Advocacy groups in Alabama<
> https://www.documentcloud.org/documents/6827818-AL-OCR-Complaint-3-24-20-Docx.html>,
> Kansas<
> https://www.documentcloud.org/documents/6825864-Kansas-OCR-Complaint-3-27-20-Final.html>,
> Tennessee<
> https://www.documentcloud.org/documents/6825859-2020-03-27-TN-OCR-Complaint-Re-Healthcare.html>
> and Washington State<
> https://www.disabilityrightswa.org/2020/03/23/disability-discrimination-complaint-filed-over-covid-19-treatment-rationing-plan-in-washington-state/>
> have all filed similar complaints in recent weeks.
>
> “A real policy prohibiting discrimination in the allocation of ventilators
> and all health care must be enacted immediately,” said Timothy A. Clune,
> the executive director of Disability Rights New York.
>
> A spokeswoman for the state declined to comment on the complaint.
>
> Few in New York’s system have been hit harder by the virus than Mr.
> McGuire and his staff.
>
> On March 24, he quarantined CP Nassau’s group home in Bayville, a village
> on the North Shore of Long Island. Staff members were asked to report “with
> toothbrushes and pillows and hunker down,” he said. “Normal was gone. Our
> staff are usually called direct service providers — all of a sudden they
> were lifted up to being essential health care workers.”
>
> Mr. McGuire said his organization had a longstanding relationship with
> Glen Cove Hospital, part of the Northwell Health system: “Glen Cove knows
> our guys,” he said. But eventually the hospital, like many others, began
> turning away patients with lesser symptoms.
>
> “If they didn’t have symptoms that were life-threatening, they had to go,”
> he said. “Hospitals got overwhelmed. Nobody’s fault. Who could have
> predicted this?”
>
> As a result, symptomatic residents returned home, probably leading to a
> further increase in cases.
>
> By March 26, Northwell sent over several nurses in protective gear, who
> moved through the building conducting tests on both the residents and the
> staff.
>
> Arios Eugene, who manages the residence, called it a “scary day.”
>
> “They came in — they were dressed in gowns and masks, all dressed up to
> protect themselves — and went from room to room,” he recalled, adding that
> the gravity of the situation hit him. “It was real. It was like, 'Oh my
> God, this is real. It’s hit our front door.’”
>
> Some staff members began crying, and he tried to reassure them.
>
> The next day, Mr. McGuire, a former caregiver himself, delivered a message
> to his staff<
> http://www.cpnassau.org/message-to-staff-from-bob-mcguire-executive-director/>,
> his hands resting on the knees of his bluejeans. He urged those who had
> left to return.
>
> “For those of you who haven’t been on the battleground, I will tell you,
> it’s been difficult,” he said. “Everybody in this agency does saintly
> things every day.”
>
> There were numerous challenges. Fragile residents had to be left alone at
> hospitals. James Moran, the chief executive of Care Design, which manages
> the care of residents in homes across the state, has been working with the
> state to relax such rules for the developmentally disabled.
>
> “In many cases they can’t speak for themselves, or have anxiety issues,
> with nobody there who they know who can support them,” he said.
>
> Protective gear was also in short supply at the Bayville home and
> throughout the system. Mike Alvaro, treasurer of New York Disability
> Advocates, said that it was a struggle to ensure “that the face masks and
> the gowns and gloves are there,” and that already stretched budgets were
> being tested.
>
> Oxygen was another challenge.
>
> "One day, we were fine, and then we were in trouble and we needed oxygen,”
> Mr. McGuire said. He consulted with his organization’s board and was
> ultimately able to buy some oxygen from a local welding company. Many
> remaining residents who had not tested positive were moved out of the
> house, into a building used for daytime activities.
>
> He grew emotional talking about his caregivers, whose pay starts at
> minimum wage. He has put up three large signs outside the residence saying,
> “Heroes Work Here.”
>
> “We don’t hear very much about our staff, and they are first responders,
> they are heroes, and they need to be recognized,” he said. “If we fail, our
> staff, there’s no backup. We’re the end of the line.”
>
> Mr. Eugene keeps himself isolated at home from his wife, his adult
> children and even his dog.
>
> “Every morning when I wake up, I don’t think about it,” he said. “This is
> what we signed for, to take care of people. We know how to do it — we just
> have to do it with less people. We're doing the best we can to keep people
> alive.”
>
>   *
>
>
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