As people travel through life, especially when young, they rarely think of securing long-term care insurance. They think that being old is still a long way off. Now, the most carefree of generations — known as “baby boomers” who make up a large sector of the United States’ population — has turned gray and many now find themselves in need of care facilities.

In 2030, only seven years away, all baby boomers will be over 65 years old and will make up 21 percent of the country’s population.

“There are about 300,000 people on any given day in California who may be there for short-term, after surgery, maybe they have hip surgery, maybe they have [another type of] surgery, heart surgery, but they go into nursing homes,” said Blanca Castro, long-term care ombudsman at the California Department of Aging.

While going into a nursing home or long-term care may not be what people want, oftentimes family members are not in a position to offer the extensive care that may be needed as we age.

There is a “keeping fingers crossed” mentality hoping when a relative is placed in a facility that they will be treated properly.

Aging advocates also have concerns and question whether residents receive proper health care, especially when these care facilities have chronic staffing shortages and lack training among its staff.

The needs of residents living in long-term care facilities should be addressed to protect their rights.

“Every individual has rights that must be honored and protected,” said Castro.

It’s the role of the ombudsman, said Castro, not to be an enforcement agency, but to assist those living for short or long-term care in facilities. “The main question we ask is: what do you want? What does resolution look like to you?”

In California, there are currently about 2,000 nursing homes and almost 12,000 long-term care facilities that are in assisted living facilities. It’s no secret that some are much better than others and these facilities especially during the pandemic were understaffed.

“Many of the people that are in long-term care facilities, are not able to pay on their own or don’t have long-term care insurance and are low income,” said Castro.

Castro said an ombudsman will go to a facility and communicate with a resident who may feel isn’t being treated with respect and dignity. But that may be challenging as she also said her office received more than 40,000 complaint calls last year. 

While the majority were concerned about not being able to visit family members in the facility during the pandemic, there were also calls to complain about medications not being given and improper discharges. At the same time, Castro points out that those working at these facilities may not be adequately compensated or even well-trained. “It is a challenging job,” she said.

“Just because you go into a nursing facility or long-term care facility, you are still the same person you were before you entered, you still have a name, you still have family, you have a history, you have life experiences, you still matter,” said Castro.

Lessons Learned — Nursing Homes Weren’t Prepared For COVID-19

Nursing homes were not well prepared for the pandemic — either by containing the spread of the virus or by responding to the emotional toll it took when visits weren’t allowed.

“What we did learn is that the isolation, not only did it harm, the fact that people were unable to see their loved ones, it actually made their conditions worse.

“Many people who had maybe early onset dementia [became] much more severe,” said Castro. It’s shocking to see the numbers. In 2021, an estimated 10,000 people died from COVID-19 in the state’s nursing facilities.

New laws have been put in place that now require infection control plans, but Castro believes that many died in nursing facilities because of being isolated.

She pointed out that human beings need touch, conversation and contact, and when facilities were locked down, residents became “prisoners” and weren’t allowed to go out and visitors weren’t allowed to go in.

“At the end of the pandemic, people who already had some chronic conditions may have died an earlier death. And many people were unable to put closure and be with their loved ones as they were passing from life to death,” she said.

“What we learned from the pandemic is that every long-term care facility must have an infection control plan in place. So for every individual that works there, that visits, there are protocols to ensure that if there is an infection, they know how to mitigate it and how to prevent it from spreading.”

There are now specific recommendations and requirements for all care facilities that must be maintained that regulatory agencies should be checking on.

“This includes washing your hands in between caring from one resident to another, making sure you’re not using the same towel for one resident to another, ensuring you’re wearing a mask if you might feel like you have a cough or not going in at all,” said Castro.

Dr. Anna Chodos is an associate professor of medicine in the Division of General Internal Medicine at Zuckerberg San Francisco General and the Division of Geriatrics, at the Department of Medicine at UCSF. She was part of the COVID-19 response team that handled outbreak response work even before vaccines were available and went into nursing homes and assisted living facilities.

“As the nursing ratios go up, infections go down, so the more attention and health care people can get in there and where they are in a nursing home, the less COVID risk there is. And so that’s another thing that worries me, the understaffing in some of these settings,” said Chodos.

The Nursing Home Reform Act and the Need for Enforcement

Every nursing home that is certified to accept payment for Medicare or Medicaid is regulated by the Nursing Home Reform Act.

“The Reform Act requires that each nursing home provide the care needed by a resident to reach their highest practicable level of functioning by providing all necessary and appropriate care for a particular resident, or in other words, person-centered care that is guided by and respectful of what each resident as an individual needs and what they want,” said Attorney Hagar Dickman who represents the nonprofit Justice in Aging’s Health Care.

Facilities are required to discuss and create care plans with residents and their families. Their care should include mealtimes, food and their waking times.

“As with most laws, there’s always a difference between what rights are available and who and how those rights are being enforced,” Hagar points out. “And unfortunately, enforcing these rights falls to residents and their family members. And enforcement requires awareness of the right familiarity with processes for enforcement.

“Barriers to enforcement are particularly important to consider in light of the well documented racial disparities and quality of care in nursing homes, so that Black Americans, for example, are three times more likely to reside in poor performing or lower quality nursing homes than white Americans.”

Those living in nursing and assisted living facilities may not be aware of the rights that they have that can and should be enforced. They may not have the ability to advocate for themselves or have family members who can request improved care or question whether enforcement of care is being conducted.

“The severe consequences of these disparities were highlighted in the pandemic where residents of color were disproportionately killed by the virus. So whatever we, as advocates do to ensure that we have robust enforcement has to really be seen from that light of disparities,” Hagar continued. 

He, with others who spoke at an Ethnic Media Services briefing, suggested that residents living in the facilities with their families form councils to advocate for their rights. “There is power in numbers,” he said.

There is much to question and a need to lift the rug.

“Who is suffering from poor rights enforcement or from the presence of these rights? Which facilities are actually following them versus not?” asked Dickman.

“I think [these questions] also present some racial disparities, and so we should really focus that advocacy on enforcement with that in mind.”

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