CT women credited for work to change federal legislation called ‘inhumane.’ Called step for ‘human dignity’

A Connecticut woman who has been 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, has been credited with advocacy that helped see it get passed by a congressional committee.

“This week, my bipartisan Essential Caregivers Act advanced through the House Ways and Means Committee, bringing us one step closer to ensuring nursing home residents and individuals in long-term care facilities are never again separated from the loved ones they rely on during a federal, state, or local emergency, including a public health emergency,” said New York U.S. Rep. Claudia Tenney, 24th District.

Connecticut U.S. Rep. John B. Larson, D-1, said he and every member of the House Ways and Means Committee voted to advance the Essential Caregivers Act to the House floor “on a bipartisan, unanimous basis.” Larson said he and U.S. Sen. Richard Blumenthal introduced the bill last year with and Sen. John Cornyn [R-Texas], and it would allow residents in nursing homes and similar facilities to “designate two loved ones as ‘essential caregivers,’ so everyone has in-person access to a loved one, including when visitations are restricted due to a declared emergency.”

The caregivers would maintain visitation rights to provide care and support to residents, while following the same health protocols as staff, according to Larson.

And while Larson credited the committee and lawmakers, he said in remarks that he and others, including Tenney “got this information from our constituents and we learned firsthand,” and he “would like to thank as well Irma Rappaport, Liz Stern, Amy Badini, and also the long-term care ombudsman in the state of Connecticut, Mairead Painter, for her continuous advocacy.”

“I think Mr. Chairman, as you know that it’s great when you have a piece of legislation and you’re able to put your name on it, but in truth, it’s those individuals, it’s the citizens that get involved, it’s the citizens that get the ear of their elected members of Congress in a representative form of government,” Larson said.

Irma Rappaport, of Orange, got involved after a family experience and has said she knew 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 learned this when her now late mom, Lillian Felix, was in long-term care during the pandemic, and at that time access to such facilities was extremely limited.

Connecticut had adopted a law that 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 as that law only applies to Connecticut, advocates believed it was necessary to enact a similar measure on the federal level.

“During the COVID-19 pandemic, too many seniors and individuals with disabilities endured unnecessary isolation when families were prevented from providing care, advocacy, and emotional support,” Tenney said.

The “legislation protects the right of residents to have access to a designated essential caregiver while establishing clear safety guidelines to protect patients, caregivers, and facility staff. I will continue working to advance this commonsense, bipartisan legislation to preserve the dignity, well-being, and quality of care for some of our most vulnerable Americans.”

The goal of the Essential Caregivers Act is to prevent “a repeat of the prolonged isolation and lack of care that long-term care residents suffered from during the COVID-19 pandemic,” according to Larson. It specifically would ensure that “in any future emergency, at least one designated essential caregiver is able to access their loved ones in a manner consistent with all applicable health and safety protocols.”

Larson said the act seeks to correct “one of the most inhumane things that could possibly happen” and that “is the inability to meet with a dying loved one because of an outdated outmoded lack of humanity piece of legislation.”

“The truth of the matter is it happens far more often than not. There are still major differences etc. And as we talk about the number of Americans in the wealthiest nation in the world, the only modern day industrial economy and country in the world that does not have health care for all of its citizens demonstrates that the work that still needs to be done in this committee lies ahead of us,” Larson said in committee remarks. “This bill incrementally is an important and good step, common sense, but it’s also common sense, I believe, as we go forward to make sure that now the business community is waking up and seeing the extraordinary cost of health care and health care delivery.”

Blumenthal said the vote by the Ways and Means Committee is “an important step toward ensuring we never repeat the tragic, isolation nursing home residents faced during the pandemic.”

“This bill establishes a vital lifeline by guaranteeing access to essential caregivers when visitations are restricted, giving nursing home residents an invaluable connection to their loved ones,” Blumenthal said in a statement.  “Our work is not finished, but I’m grateful to Representatives Larson and Tenney, Senator Cornyn and our bipartisan coalition for their invaluable collaboration as we work to pass this bill and continue efforts to protect both public health and human dignity.”

Rappaport said her fellow Connecticut advocates for act, “Liz Stern, Amy Badini, and I, as well as Long-Term Care Ombudsman Mairead Painter, were honored to be mentioned as instrumental advocates of the Essential Caregivers Act” by Reps. Claudia Tenney and John Larson at the Ways and Means Committee markup.

“At the markup, the House Ways and Means Committee voted unanimously, 38-0, to move the bill to the full House for a vote,” she said.

She noted that Chairman Jason Smith said at the markup, “this legislation recognizes an essential truth: a loved one does not stop being a caregiver simply because a family member moves into a nursing home. I appreciate Representative Tenney’s leadership in ensuring that nursing home residents are treated with dignity and compassion. I urge my colleagues to support this legislation.”

Rappaport said said Connecticut’s House delegation cosponsored the bill, as did Blumenthal and U.S. Sen. Chris Murphy.

U.S. Rep Rosa DeLauro, D-3, has 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,” DeLauro has said.