During the lockdown of nursing homes at the start of the COVID-19 pandemic, Irma Rappaport from Orange would visit her mother’s window at a nursing home several times a day. Her mother had dementia and she knew who her daughter was but didn’t understand why she was out.
Before the pandemic, Rappaport was much more than a visitor.
“I did direct care (bathing, feeding, brushing teeth, wound care, nail trimming, washing, dressing, exercising, going out) 3-6 times a day, 7 days a week for 6 years,” said she wrote in a personal statement. . “Then on March 9, 2020, I was told I was not allowed to enter.”
Rappaport thought that if she had been let in, she could have made sure the room wasn’t too hot and her mother was drinking enough fluids, and possibly prevent the bedsore her mother developed. And with existing staff shortages at nursing homes worsening during the pandemic, staff couldn’t spend as much time as they would like with each resident.
His mother died last February at the age of 91, but Rappaport has since been part of a group of people across the state who are doggedly trying to pass laws at the state and federal levels to protect himself. ensuring that those who are considered “essential caregivers” or “essential support people” are not kept away from long-term care facilities, even if visitors were restricted.
Current directions of the Centers for Medicare & Medicaid Services says facilities “can no longer limit the frequency and duration of resident visits, the number of visitors, or require pre-planning of visits.” But advocates want to make sure what happened in 2020 never happens again.
In June, Governor Ned Lamont signed a bill — which passed the state House and Senate without a vote — directing the commissioner of the Department of Public Health to establish a policy that would allow a primary or secondary essential support person despite general visiting 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, RN.Y., introduced a bill June 4 that would require nursing, intermediate care and rehabilitation facilities to allow essential caregivers in during any public health emergency. HR 3733 – Essential Caregiver Act of 2021 would allow a resident to designate two essential caregivers to access and provide assistance 12 hours a day.
The bill defines an essential caregiver as “a person who will provide assistance consisting of activities of daily living, emotional support, or companionship to such a resident; and agrees to follow all safety protocols established by that facility.” .
Rep. John Larson, D-1st District, was one of the original co-sponsors, and the other four Connecticut Reps have since signed on: Rep. Joe Courtney, D-2nd District, Aug. 13; Rep. Rosa DeLauro, D-3rd District, Jan. 10; Rep. Jim Himes, D-4th District, on Feb. 18, and Rep. Jahana Hayes, D-5th District, on March 3.
Those 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 championed essential protections for caregivers. The proposed legislation does not include the words ‘visitor’ or ‘visitor’ at all, which advocate as because they emphasize that an essential carer is not a visitor.
“Before March 2020, essential caregivers in Southeast Connecticut were firmly in place without ever giving them the name essential caregiver,” Stern said. Over the past two years, she said, “family members across the country have been working tirelessly to formalize what was a well-oiled machine informally, before March 2020.”
This became the primary focus of Stern, who previously focused on nursing home reform, such as developing family councils and promoting mediator work.
“We would never replace or supplant staff, but what we want to do is support (them) in our mission to increase hours of direct care,” Stern said.
With all five U.S. House Representatives in Connecticut co-sponsoring the bill, which has gone nowhere since it was sent to committees, Rappaport has refocused its efforts on appealing to offices representatives across the country.
“We are looking to the future,” she said. “We’ve experienced this first hand, and this is our chance to help people in the future.”
DPH proposes a policy
As Rappaport focused his attentions on the national level, Stern and Amy Badini of Greenwich met with the state Department of Public Health.
Badini’s mother – who is 76 and has terminal Alzheimer’s disease – and a woman Badini befriended at her mother’s retirement home contracted COVID-19 early on. . Although they both survived the illness, Badini said the woman she calls her adoptive grandmother “couldn’t survive the isolation”.
She is frustrated that DPH has not finalized the policy since the legislature issued the directive in June.
Mairead Painter, the state’s long-term care ombudsman, said Friday that the DPH had developed 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 are coming. A DPH spokesperson did not provide answers to questions submitted by The Day.
Painter said that “because visitation is open right now, it’s given us time to make sure essential caregiver policies and procedures here in Connecticut are up to the standard we want them to be done, rather than release something that might need to be changed later.”
She saw that other states had to go back and revise their policies, or find that their policies weren’t as strong as they wanted.
“I think the importance of politics is to never forget what we’ve learned,” Painter said, “and what we’ve learned is that we have to put those criteria and those systems in place, to so that if ever the unexpected happens, we don’t work to catch up.”
Some family advocates have expressed concern that facilities are not following Centers for Medicare & Medicaid Services visitation guidelines and are 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 that don’t comply with federal rules are already subject to enforcement.
He said of the state’s policy on essential caregivers: ‘Because there are no severe restrictions in place at this time, there will be no noticeable and remarkable change in the policy. right away. It’s really about securing for the future, and that’s what I think we should be doing now.”
Barrett said there was “consensus around the idea that in the event that visitation is again severely restricted, we should have a system in place” that allows carers to have continued access to their loved ones. .