For Irma Rappaport, a circumstance during which an essential caregiver can’t do an in-person visit for a loved one in long-term care can be “dehumanizing.”
Rappaport knows this from her own experience as her now late mom, Lillian Felix, was in long-term care during the pandemic, when access to such facilities was extremely limited.
Now, Rappaport, an Orange resident, is among those fighting for a federal Essential Caregivers Act, which would assure that residents of long-term care can retain the right to in-person access to a designated essential caregiver. This would apply even during circumstances where such visits would be restricted by emergency orders.
Connecticut adopted such a law, and it allows long-term care facility residents, or their representative, to designate a primary and a secondary “essential support person” who is able to visit the resident despite general visitation restrictions for other visitors. It applies to people living in nursing homes and managed residential communities that provide assisted living services, records show.
But the law only applies to Connecticut and advocates believe it is necessary to enact a similar measure on the federal level.
“I have head heartbreaking stories from constituents who were separated from their loved ones in long-term care during the pandemic, even families forced to miss a parent or grandparent’s final moments,” said U.S. Rep. John Larson, D-Conn., who supports the federal bill.
“We can never allow the isolation that took place to happen again. That’s why I teamed up with Senator Blumenthal and our Republican colleague, Claudia Tenney from New York, on a bipartisan bill that guarantees visiting access during future emergencies and also protects the safety of nursing home residents,” Larson said. “Congress owes it to the steadfast advocates who have bravely come forward with their stories to pass the Essential Caregivers Act.”
U.S. Rep Rosa DeLauro, D-3, also said she has “been a strong supporter of the Essential Caregivers Act because staff shortages and long-term care lockdowns have kept too many families apart at moments where close, compassionate care is most needed.
“Irma’s powerful advocacy, including testifying before the House Select Subcommittee on COVID-19, was a crucial step in raising awareness about this crisis and the devastating impacts it was having on people across the country. I am proud to stand with my constituent Irma and with every other American who just wants to help their family when they need it the most.”
The federal bill would direct the Centers for Medicare and Medicaid Services to create uniform safety guidelines so essential caregivers could provide care, while protecting residents and staff, according to U.S. Rep. Claudia Tenney, NY-24, also a sponsor of the bill.
Specifically, congressional records show, the bill would prohibit certain health care facilities from “limiting the access of essential caregivers to residents of those facilities, including during designated emergency periods.”
It would apply to Medicare skilled nursing facilities, Medicaid nursing facilities and Medicaid intermediate care facilities, the bill says.
The bill would allow facilities to restrict access during emergency periods for an initial period of up to seven days and for one additional maximum seven-day period, if approved by the state health department. It also would require essential caregivers to agree to comply with safety protocols set by the facility, “which may be no more stringent for caregivers compared to those for staff. Caregivers who fail to comply with these requirements may be denied access, subject to an appeals process,” the bill says.
“We just need to get this in place,” Rappaport said. “This bill will acknowledge essential caregivers … it acknowledges they are essential to their loved ones.”
“Human being are not meant to be alone,” she said.
Mairead Painter, Connecticut’s State Long Term Care Ombudsman, agrees.
“I believe it is an essential idea,” Painter said of the bill.
Painter said she knows from experience the toll the pandemic and rules about entering facilities took on many people.
“Caregiving from family members doesn’t stop; their essential support system doesn’t stop,” she said. “We saw so many people negatively impacted.”
“It was devastating, it was one of the hardest points in my career overall … family friends, spiritual support, the desperation they were expressing and feeling,” she said.
Painter also noted that removing essential caregivers makes an impact on patients and staff of residential facilities. “How do you feed 15 people in a dignified way,” she said, of an example of what can occur.
“In every single nursing home there are residents receiving care, their outside support system coming in to be able to provide ongoing care and support to the resident,” Painter said. “We underestimate the number of those and the type of care and support that the external care members provide in long-term care setting.”
She also pointed out that people do not lose their rights when they are in long-term care, and “they should not lose their independent voice of who they are.”
Painter said the impact on staff also can be profound, as they “want to care for people — they want good outcomes.”
She noted in her online support of the bill that, “residents often rely on specific individuals for practical support and advocacy, including help with meals and mobility, communication support, cultural and language continuity, oversight of care concerns, and emotional stability. Isolation is not a neutral policy choice. It can affect physical health, mental health, and overall quality of life.”
In the current legislative session, Painter notes her office is advocating for more oversight, strengthening resident rights, improving accountability in long term care settings, and modernizing legal “protections to reflect resident experience and evolving models of care.”
U.S. Rep. Joe Courtney, D-2, who also supports the bill, said, “We know from the COVID pandemic that access to essential caregivers is critical for nursing home residents.
“Social isolation can rapidly deteriorate both physical and mental wellbeing,” he said. “The Essential Caregivers Act addresses that issue by ensuring at least one designated caregiver will have safe, in-person access to their loved ones in long-term care facilities should regular visitation be restricted.”
U.S. Rep. Joe Courtney (file photo)
U.S. Sen. Richard Blumenthal’s staff referred the Courant only to his previous statement on the bill, in which he said that act would ensure “that the rights of residents in long-term care facilities are protected when a future public health crisis strikes.”
“By allowing at least one designated essential caregiver to have safe, in-person access to their loved ones during an emergency, our bipartisan legislation guarantees that residents in these facilities will never again have to face the isolation that far too many patients experienced during the COVID-19 pandemic.”
Rappaport noted that there are many people, including advocates like herself in Connecticut, supporting the effort to pass the bill, which was introduced in December, and “we all support each other; we all have our strengths.” She pointed out that AARP added its support.
“Family caregivers are indispensable to the physical and emotional well-being of their loved ones, whether they are aging at home in their communities or residing in nursing facilities,” Bill Sweeney, AARP senior vice president government affairs wrote. “For residents in nursing homes, their presence is a critical safeguard. Regular access to loved ones can reduce instances of abuse and neglect, prevent avoidable injuries, and mitigate the serious health consequences of loneliness and social isolation.”
“We’re honoring our loved one by making sure this doesn’t happen again,” Rappaport said. “It’s a human right.”