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    Tuesday, June 18, 2024

    Advocates see hope for passage of ‘Essential Caregivers Act’

    From left, Edward Onofrio, his daughter, Liz Stern, and nursing asistant Karol Onton, Thursday, June 6, 2024, outside Masonicare in Mystic, where Onofrio is a resident. (Dana Jensen/The Day)
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    During the COVID-19 pandemic, the virus wasn’t the only thing that wreaked havoc on residents of nursing homes and other long-term-care facilities.

    Isolation took a toll, too.

    Soon after the disease’s March 2020 outbreak, the U.S. Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services and states adopted regulations that kept family members from freely visiting their loved ones in facilities, in some cases for extended periods.

    Many long-term care residents who escaped COVID nevertheless declined dramatically or died prematurely.

    Ever since, advocates have been pushing for the enactment of a federal law that would ensure caregivers have access to long-term care residents during periods of restricted visitation, including but not limited to pandemics and other health emergencies.

    Four years into the fight, a national coalition whose Connecticut contingent includes a Stonington woman is hopeful its efforts will succeed during the 118th Congress, which concludes in January.

    In May, U.S. Sen. Richard Blumenthal, D-Conn., co-sponsored S. 4280, the Essential Caregivers Act of 2024, a companion to H.R. 8331 in the House. A 2021 version of the House bill failed to advance during the 117th Congress.

    The new bill would ensure that in any future emergency, a resident of a facility receiving federal Medicare and Medicaid funding would have the right to designate at least one “essential caregiver” who would have in-person access to the resident at all times. If it becomes law, it will bring some clarity to the issue, granting residents the same rights across facilities in every state.

    “This is a superior bill,” Liz Stern, the Stonington advocate, said of S. 4280. “But we know it’s a long haul. We may be hoping against hope it comes up in this Congress.”

    Stern visited her mother almost daily for four years after a stroke landed her in a nursing home. Those in-person visits ended March 10, 2020, when COVID-19 caused the facility to ban them.

    “She got 30-minute virtual and 20-minute supervised window visits but no human touch,” Stern wrote in “Protecting Them to Death,” a collection of families’ stories of loved ones who lived or died in long-term facilities under isolation protocols. “She never understood why she was being punished, why her family abandoned her, or why she spent the last eight months of her life in isolation.”

    Stern’s mother, 91, died Nov. 3, 2020, “having lost all quality of life,” Stern wrote.

    Having shifted some of her focus to other issues, Stern now facilitates the family council at Masonicare at Mystic, an assisting-living facility where her 98-year-old father resides.

    She noted the original House bill, sponsored by Reps. Claudia Tenney, a New York Republican, and John Larson, a Connecticut Democrat, gathered 81 cosponsors, including 45 Republicans and 36 Democrats.

    In less than a month, H.R. 8331 has garnered 32 cosponsors ― 18 Republicans and 14 Democrats, including three Connecticut representatives: Larson, Rosa DeLauro and Jahana Hayes.

    Stern said the advocates’ coalition, known as Caregivers for Compromise, worked with a legislative assistant in Blumenthal’s office, Kasandra Navarro, who advised the bicameral approach ― simultaneously submitting companion bills in the House and Senate in a bid to expedite the approval process. Blumenthal sought a strong Republican cosponsor of the Senate bill, Sen. John Cornyn of Texas.

    Irma Rappaport, of Orange, the leading Connecticut advocate, said the bill’s best chance of passage might be as part of a comprehensive health bill.

    The Senate caregivers bill, whose language has yet to be finalized, describes the perilous state of long-term facilities in the first year of the pandemic, when 1 in 5 health care workers resigned, retired or were fired, exacerbating a longstanding staff shortage.

    “Lack of staff, combined with the forced absence of families, many of whom provided informal care and support to residents, resulted in a significant decline in residents’ health and well-being,” the legislation says.

    During the pandemic, pressure ulcers in nursing home residents rose by 31%, the number of residents experiencing significant weight loss rose by 49%, the number reporting feeling down, depressed or hopeless rose by 40% and the number prescribed anti-psychotic medications rose by 78%, according to the bill.

    The supplemental care that essential caregivers provide for their loved ones can make all the difference.

    Rappaport knows that as well as anyone. Her advocacy was sparked by her 91-year-old mother’s February 2021 death in a nursing home that Rappaport said had helped care for her for 11 years. And then, when COVID-19 struck, Rappaport’s almost daily visits were stopped for 11 months.

    “My mother lost 15 pounds, developed two infections and three pressure ulcers, was not allowed outside, and went months without nails trimmed or teeth brushed,” Rappaport wrote in “Protecting Them to Death.”

    “When I got in, I was just shocked at her condition,” she said in a phone interview. “She didn’t die because of how old she was or because of COVID. She died from neglect, ‘failure to thrive’ and dehydration ...”

    Rappaport pointed to features of the new caregivers bill, including the one granting a long-term care resident the right to designate at least one essential caregiver who would have unrestricted access to the resident in an emergency. A designated caregiver ― family member, friend, minister, volunteer or private aide ― could provide help with daily living activities, emotional support or companionship.

    The bill would allow facilities to restrict access for an initial period of up to seven days and for an additional period of up to seven days with the approval of a state health department. Such periods would give facilities time to assemble personal protective equipment or figure out protocols, for example, Rappaport said.

    Essential caregivers would have to follow the same safety protocols as facility staff.

    In 2021, Gov. Ned Lamont signed into law a bill providing for the designation of primary and secondary “essential support persons” and ordering the commissioner of public health to establish a statewide visitation policy for long-term care facilities, including during emergencies.

    According to Rappaport, Connecticut is one of a handful of states that have enacted such a law.

    “It really covers all the bases,” Stern, the Stonington advocate, said of the Connecticut law. “But you still need a federal law.”

    Rappaport said a federal law would benefit Connecticut residents with loved ones in long-term care facilities in other states. And a federal law would be more difficult to alter than a state one, she said.

    “We are always going to follow whatever the law is. We’re going to interpret it as liberally as we can,” said Bill White, president of Beechwood, a New London facility where, he said, no residents died of COVID-19.

    “There was a period when we were not allowed to have people in the building,” White said. “We got laptops so people could communicate that way, and set up visits through a window. It wasn’t the same as hugging, but it was something.”

    The caregivers’ coalition wants to ensure there’ll be hugging.

    b.hallenbeck@theday.com

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