A CT woman won’t give up her fight for ‘human dignity’ practices. Here’s what she’s doing and why.

A Connecticut woman has been trying to be a voice for untold others who may not be able to be able to speak for themselves.

Irma Rappaport, credited with advocacy that helped see a bill get passed by a congressional committee, now wants to help bring her fight to many others. She has noted that leaving people without essential care is “inhumane.”

“We are their voice,” Rappaport said in an interview. “It shows them we love them and are about them.”

Rappaport experienced being separated from her own mother during the covid pandemic, as her mother was in a nursing home. This separation occurred for hundreds of Connecticut families, some of whom saw loved ones die alone because of the restrictions on access in hospitals and nursing homes.

“We don’t know what is going to happen in the future,” Rappaport said, referring to the possibility of another pandemic or public health emergency. “We want to improve this for the future. This bill is preparing, we don’t want to scramble next time.”

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 that law only applies in this state and advocates believed it was necessary to enact a similar measure on the federal level.

“It is heartbreaking to hear from constituents who were separated from their loved ones in long-term care during the pandemic, some even forced to miss a parent or grandparent’s final moments,” Connecticut U.S. Rep. John B. Larson, D-1, said.

Mairead Painter, Connecticut’s State Long Term Care Ombudsman, has said she believes the bill is an essential idea. Painter has 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 has said. “We saw so many people negatively impacted.”

Now Rappaport and many others are in the fight for a federal Essential Caregivers Act, which would give residents of long-term care facilities the right to in-person access to a designated essential caregiver. It advanced through the House Ways and Means Committee in July. The bill aims to ensure nursing home residents and individuals in long-term care facilities can’t be separated from loved ones they rely on during a federal, state, or local emergency, including a public health emergency, according to New York U.S. Rep. Claudia Tenney, 24th District.

In an effort to spread the word for the need for this bill, Rappaport has organized Connecticut joining the inaugural walk and peaceful rally for Long Term Care Reform. In Connecticut the walk and gathering will take place at High Plains Community Center on Orange Center Road in Orange, from 1:30 to 3:30 p.m. Sunday Sept. 27. It will take place behind the center, at the wooden gazebo. The event will be moved inside the center if it is raining. Other organizers are Eilon Caspi, of West Hartford and Phyllis Ayman of Stamford.

“It is needed to keep hearing from their constituents,” Rappaport said, referring to the federal proposal.

“The hope is that this will lead to more things,” she said. “My goal is that I will not give up until this bill passes.”

Rappaport said holding the event in Orange is “very meaningful” for her as that is where her mother was living. She said she “felt alone” when she was told she could not come into the facility due to rules in place during the pandemic. There will be a chair at the walk for people to post messages on, she said.

“I hope that everyone comes … our feeling is sharing … That’s all you are asking is to have your voices heard,” she said of the event. ”I want to elevate you.”

“Irma’s passionate advocacy has been crucial in raising awareness for the need to pass reforms and the long-lasting impact that the COVID-19 pandemic and prolonged isolation had not only on patients, but also their families,” said U.S. Rep. Rosa DeLauro, D-3.

“I am a proud supporter of the Essential Caregivers Act. The COVID-19 pandemic revealed issues with our current long-term care system that desperately need to be addressed. I will continue to fight for this legislation, following its passage through the House Ways and Means Committee, because family members deserve to have access to their loved ones and their compassionate care when they need it most.”

Larson also noted the act “would ensure that isolation can never take place again by guaranteeing visiting access during future emergencies.

“Working with my colleagues on both sides of the aisle, and leaders in this fight like Irma Rappaport, Liz Stern, Amy Badini, and Long-Term Care Ombudsman Mairead Painter, we unanimously passed the Essential Caregivers Act out of the Ways and Means Committee earlier this year. I am cheering on Irma and all the advocates rallying this weekend for action—and with their dedication and determination, I am confident that we can get this bill across the finish line.”

Larson has 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 has also noted that 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.

DeLauro also has said, Rappaport’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.”

Blumenthal has said the bill continues efforts to “protect both public health and human dignity.”