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Utica-area families push for nursing home visitation

Observer-Dispatch - 9/7/2020

When Karla Abraham-Conley's mother was placed in a nursing home last September, she made it a priority to see her.

"My father and I were there every single day taking care of my mother," Conley said. "Every day."

Conley's father would visit his wife, who suffers from Alzheimer's disease, for several hours during the day at Presbyterian Homes & Services in New Hartford. Conley, of Utica, would then spend a couple of hours with her mother when she was off work.

The visitation continued until the coronavirus pandemic hit, prompting a halt to visits at nursing homes and adult care facilities. Conley said she was OK with the initial closure to protect the health of residents like her mother.

As the months dragged on, however, Conley noticed changes in her mother's health during daily FaceTime calls.

Signs of lethargy and weight loss in her mother became obvious, Conley said. Some days, her mother would be talkative. Other days, she would be essentially nonverbal.

While she acknowledged some of the changes were a result of her mother's dementia, Conley said she became increasingly frustrated with not visiting her mother and providing any additional care she needs.

"Seeing my mother decline was probably the worst feeling in the world," she said.

Taking action

Conley sent emails to Gov. Andrew Cuomo requesting greater visitation in nursing homes. Unsure what to do next, Conley said she was encouraged to start a Facebook group by an acquaintance.

The group she created, Advocates for COVID Nursing Home Residents, was created on Aug. 13 and grew to 677 members by Sept. 4. A change.org petition Conley created to advocate for hands-on visits in nursing homes has more than 3,600 signatures.

The groundswell of support comes as New York still limits visits to facilities that have no COVID-19 cases for 28 days.

Residents in New York nursing homes are allowed up to two guests, but only 10% of residents are permitted to have a visitor each day, according to guidelines released in July. Those visitors must wear face masks, submit to a temperature check and socially distance.

Conley said she would like the state to establish guidelines for essential caregivers to allow them access to relatives in nursing homes or adult care facilities. Essential caregivers would be classified as a friend or relative who visits a resident at least once a week for more than an hour to complete tasks ensuring their needs are being met.

Conley said essential caregivers would have to follow the same guidelines as staff members, like weekly COVID-19 testing, symptom monitoring and wearing appropriate personal protective equipment.

"The essential caregivers are just like the staff, except we don't get paid," she said.

Conley said other states have developed guidelines for visitation similar to her proposal and she's appealed to state and federal government officials to make it happen in New York.

The essential caregiver designation has been used in New Jersey, South Dakota, Indiana and Minnesota. An executive directive from New Jersey Gov. Philip Murphy allowed essential caregiver visitation in limited situations such as end-of-life or compassionate care, for situations such as hospice care or recent admission to a nursing home.

Michigan does not use the essential caregiver designation but provides visitation for those providing visits that support "activities of daily living" such as assistance with eating.

State response

State Sen. Rachel May, D-Syracuse, introduced a bill to designate "personal care visitors" as a family member or legal guardian who provides care or support essential to the mental, physical or social well-being for the resident of a nursing home or residential health care facilities on Sept. 2.

The bill would permit a single personal care visitor for each resident as long as they followed restrictions such as waiving liability against the facility, completing testing and health screenings and wearing appropriate personal protective equipment.

One state official who Conley reached out to was state Senate Deputy Minority Leader Joseph Griffo, R-Rome. He said Cuomo and the state government need to revisit the policy restricting visits for essential care providers.

The 28-day waiting period to reopen facilities between positive cases of coronavirus can be difficult to reach, Griffo said, especially when a single case can reset the clock.

"I think it's really unacceptable that these ... residents have not had the opportunity to have that social, emotional connection with their family, which I believe is essential to their health and well being," he said.

Family members should be able to visit their loved ones and ensure they're getting the attention they need, including personal care like getting their hair cut and styled, Griffo said.

The change to visitation restrictions and the creation of the essential caregiver designation could both be done by executive order, Griffo said. He said the entire senior residential care industry is in need of reform in the future, citing stories from families with loved ones in tough situations.

"When these people have given so much throughout their lives to their communities, they deserve to be treated the best way possible," Griffo said.

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