To the dismay of families, Biden’s nursing home reform doesn’t see them as primary caregivers.

When the Biden administration announced the recruitment proposed nursing home reforms Last month, consumer advocates were both pleased and puzzled.

The reforms require minimum staffing requirements, stricter regulatory oversight and better public awareness of the quality of nursing homes — measures that advocates have been pushing for years. However, they do not affect residents’ rights to contact informal caregivers—family members and friends—who provide both emotional support and practical help.

This has been a painful issue during the pandemic as nursing homes have been closed, caregivers have been unable to visit loved ones, and a significant number of residents have been isolated, discouraged or depressed.

Thousands of inhabitants died alone, leaving a sad trail for those who could not be near them. Generally, over 200,000 residents and employeesAccording to an analysis by KFF, in the first two years of the pandemic, COVID-19 deaths in the first two years of the pandemic were in long-term care facilities.

“We learned that the support of family members is absolutely essential to the well-being of residents,” he said. Mairead Artist, the Connecticut Ombudsman for Long Term Care. (Ombudsmen are the official advocates for nursing home residents.) “We need to make sure that the far-reaching restrictions that have been put in place will never happen again.”

Although nursing home residents have the right to receive visitors Under federal law, that protection has been “diminished” during the pandemic, said Tony Chicotel, California nursing home reform attorney’s staff attorney. “I worry that institutions and health departments will dare to stop visits at their own discretion when there is an outbreak of an infectious disease,” he explained.

According to Chikotel, what is now needed is a law establishing that “even in a public health emergency, residents have a basic right to support from [informal] guardians who cannot be abandoned.”

New California Primary Guardians Bill (AB-2546) will allow residents to designate two such informal caregivers, one of whom will have 24/7 access to the facility without a prior schedule. Caregivers will be required to follow the same safety and infection control protocols as staff. Laws with a similar purpose have been passed in 11 states. Coalition of Primary Guardiansan advocacy group formed during the pandemic.

At the national level Primary Guardians Act 2021, another measure along these lines, is languishing in the home ways and means health subcommittee. Competing priorities, pandemic fatigue, and a sense that the COVID emergency is “left behind” contribute to inaction, said Meiteli Weismann, co-founder of the Essential Caregivers Coalition.

If drastic changes to nursing homes don’t eliminate the harm to residents when they’re cut off from their families, “we’re only halfway where we should be,” she warned. The White House did not respond to requests for comment on whether it plans to address the issue.

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Elizabeth O. Stern, 69, of Stonington, Connecticut, was unable to see her 91-year-old mother for eight months after her mother’s nursing home closed its doors on March 10, 2020. her mother, who had a stroke in 2016 and developed dementia.

“I washed her clothes and cleaned and washed the windows in her room,” Stern told me. “I took care of her nails and most of her personal hygiene. I will sing to her to make her sleep at night.”

Unable to see her family during the long lockdown caused by the pandemic, Stern’s mother became worried and her health deteriorated. Two and a half days before her death in November 2020, Stern was finally able to get into a nursing home to say goodbye to her one last time.

“So many family caregivers like me are scratching their heads and wondering why, after all the devastation we’ve been through, we’re being overlooked again in [Biden administration’s] proposed reforms,” she said.

A new study confirms the extent of assistance provided by family caregivers such as Stern. Using data from a 2016 national survey, researchers at the University of Pennsylvania reported in a recent report. Health Study that informal carers helped 91% of nursing home residents who needed help with medication; 76% of residents who needed help with self-care tasks such as bathing or dressing; 75% of residents who had problems such as getting in and out of bed or moving around the room; and 71% needed help around the house, such as managing money. On average, this care by informal caregivers amounted to 37 hours per month.

In addition to the detrimental impact on residents, the loss of this assistance during the pandemic has placed an additional burden on already stressed nursing home workers, exacerbating the staffing crisis that long-term care is suffering from, he said. Dr. Rachel Wernerstudy co-author.

“We need to discuss how to support [informal] caregivers in long-term care facilities, whether we are in a pandemic or not, by recognizing their activities, providing them with additional training and making them part of the care teams and care planning process,” Werner said.

Robin Grant, director of public policy and advocacy at National Consumer Voice for Quality Long-Term Care, an advocacy organization, added a note of caution. “One of the things that worries us is that family members and the help they provide can, in some cases, be seen as part of the solution to the problem of understaffing in nursing homes,” she told me.

“Yes, family members can help, and we want to make sure they have access to long-term care facilities. But they cannot be seen as a replacement for staff.”

In San Francisco, the line blurred for Dr. Teresa Palmer, a geriatrician whose 103-year-old mother went to bed in her nursing home in March 2021 and never got up. Concerned, Palmer insisted on removing “compassionate care” from nursing home lockdown rules and was able to see her mother at the facility for the first time in a year.

“To the staff, my mother was just an old woman who acted like an old woman. But she’s down to 90 pounds from her original weight of 105, and her bowel function has changed,” said Palmer, who took her mother to the hospital, where she was diagnosed with malnutrition, dehydration and pancreatic cancer.

Palmer brought her mother home from the hospital under hospice care, where she died 10 weeks later.

“Even in a very good nursing home like my mother’s, they don’t really have time to make sure the residents eat or drink enough, or give them the practical loving care that family members provide,” Palmer said.

As far as the nursing home industry is concerned, there are signs that this lesson has hit the mark. In a statement on the national Essential Caregivers Act, the American Health Association said, “We welcome this bill and welcome family members and friends to take an active role in the care of their loved ones.” The application was sent by Christina Crawford, Senior Communications Manager.

Ruth Katza senior vice president of public policy at Leading Age, another long-term care association, wrote in a statement that her group believes quality care “includes residents’ ability to maintain regular connections and contact with family and friends” and awaits new federal regulations. Strengthen the efforts of caregivers to support nursing home residents in emergencies in the future.

Kaiser Health News is a national health policy news service. It is an editorial independent program of the Henry J. Kaiser Family Foundation and not affiliated with Kaiser Permanente.

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