During the lockdown of nursing homes at the beginning of the COVID-19 pandemic, Irma Rappaport of Orange would go to her mother's window at a nursing home multiple times a day. Her mother had dementia, and she knew who her daughter was but didn't understand why she was outside.

Before the pandemic, Rappaport was much more than a visitor.

"I did direct care (toileting, feeding, brushing teeth, wound care, cutting nails, washing, dressing, exercising, taking outside) 3-6 times a day, 7 days a week for 6 years," she wrote in a personal statement. "Then on March 9, 2020, I was told I was not allowed in."

Rappaport thought that if she had been let in, she could have made sure the room wasn't too hot and that her mother drank enough fluids, and maybe prevented the pressure sore her mother developed. And with existing staff shortages across nursing homes that grew more severe during the pandemic, staff couldn't spend as much time with each resident as they'd like.

Her mother died last February at age 91, but Rappaport has since been one of a group of people across the state doggedly trying to get laws enacted at the state and federal levels to make sure those deemed "essential caregivers" or "essential support persons" are not kept out of long-term care facilities even if visitors were restricted.

Current guidance from the Centers for Medicare & Medicaid Services says facilities "can no longer limit the frequency and length of visits for residents, the number of visitors, or require advance scheduling of visits." But advocates want to make sure what happened in 2020 never happens again.

In June, Gov. Ned Lamont signed a bill — which passed the state House and Senate with zero no votes — directing the Department of Public Health commissioner to establish a policy that would allow a primary or secondary essential support person in despite general visitor restrictions.

Essential support includes "assistance with activities of daily living, and physical, emotional, psychological and socialization support for the resident."

At the federal level, Rep. Claudia Tenney, R-N.Y., introduced a bill on June 4 that would require nursing, intermediate care and rehabilitation facilities to permit essential caregivers during any public health emergency. H.R. 3733 – Essential Caregivers Act of 2021 would allow a resident to designate two essential caregivers to have access and provide assistance 12 hours a day.

The bill defines an essential caregiver as "an individual who will provide assistance consisting of activities of daily living, emotional support, or companionship to such resident; and agrees to follow all safety protocols established by such facility."

Rep. John Larson, D-1st District, was one of the original co-sponsors, and the other four representatives from Connecticut have since signed on: Rep. Joe Courtney, D-2nd District, on Aug. 13; Rep. Rosa DeLauro, D-3rd District, on Jan. 10; Rep. Jim Himes, D-4th District, on Feb. 18, and Rep. Jahana Hayes, D-5th District, on March 3.

These five are among the bill's 30 co-sponsors, which include 22 Republicans and eight Democrats.

"There's nothing I don't like about the federal bill," said Liz Stern of Stonington, who has been an advocate for essential caregiver protections. The proposed legislation doesn't include the words "visit" or "visitor" at all, which advocates like because they stress than an essential caregiver is not a visitor.

"Prior to March 2020, essential caregivers in southeastern Connecticut were firmly in place without ever giving them the name of essential caregiver," Stern said. For the past two years, she said, "family members across the country have been working tirelessly to formalize what was a well-oiled machine in an informal way, prior to March 2020."

This has become the main focus of Stern, who previously was focused on nursing home reform, such as developing family councils and championing ombudsman work.

"Never ever would we replace or supplant staff, but what we want to do is support (them) in our mission to increase direct care hours," Stern said.

With all five U.S. House representatives in Connecticut co-sponsoring the bill, which hasn't gone anywhere since being referred to committees, Rappaport refocused her efforts on calling the offices of representatives across the country.

"We're looking to the future," she said. "We've been through this firsthand, and this is our chance to help the people in the future."

DPH comes up with policy

While Rappaport focused her attentions on the national level, Stern and Amy Badini of Greenwich have been meeting with the state Department of Public Health.

Both Badini's mother — who is 76 and has end-stage Alzheimer's disease — and a woman Badini befriended in her mother's nursing home got COVID-19 early on. While they both survived the disease, Badini said the woman she calls her adopted grandma "couldn't survive the isolation."

She is frustrated that DPH hasn't finalized the policy since the legislature issued the directive in June.

Mairead Painter, the state's long-term care ombudsman, said Friday that DPH has completed policies and procedures and sent them to the Office of Policy and Management. She said DPH had a call with the long-term care industry two Wednesdays ago and said the policies were coming. A DPH spokesperson didn't provide answers to submitted questions from The Day.

Painter said that "because visitation is open right now, it has afforded us the time to make sure that the essential caregiver policies and procedures here in Connecticut are done to the standard we want them done to, versus getting something out that might have to be tweaked later."

She saw that other states had to go back and revise their policies, or found their policies weren't as strong as they wanted.

"I think the importance of the policy is never forgetting what we've learned," Painter said, "and what we've learned is we need to have these criteria and systems in place, so that if the unexpected ever happens ever, we're not working to catch up."

Some family advocates have voiced concern about facilities not adhering to the visitation guidance from the Centers for Medicare & Medicaid Services, and limiting visitation anyway. Matthew Barrett, president and CEO of the Connecticut Association of Health Care Facilities/Connecticut Center for Assisted Living, said any nursing homes not complying with federal rules are already subject to enforcement.

He said of the state essential caregiver policy, "Because there are no severe restrictions in place right now, there won't be a noticeable, remarkable change in policy right away. This is really about assuring for the future, and that's what I think we should be doing now."

Barrett said there's "consensus around the idea that in the event that visitation would ever again be severely restricted, we should have a system in place" that allows caregivers continued access to their loved ones.

e.moser@theday.com