When the coronavirus hit Martha Leland’s Connecticut nursing home last year, she and dozens of other residents contracted the disease while the facility was on lockdown. Twenty-eight residents died, including her roommate.
“The impact of not having friends and family come in and see us for a year was totally devastating,” she said. “And then, the staff all bound up with the masks and the shields on, that too was very difficult to accept.” She summed up the experience in one word: “scary.”
But under a law Connecticut enacted in June, nursing home residents will be able to designate an “essential support person” who can help take care of a loved one even during a public health emergency. Connecticut legislators also approved laws this year giving nursing home residents free internet access and digital devices for virtual visits and allowing video cameras in their rooms so family or friends can monitor their care.
Similar benefits are not required by the Centers for Medicare & Medicaid Services, the federal agency that oversees nursing homes and pays for most of the care they provide. But states can impose additional requirements when federal rules are insufficient or don’t exist.
And that’s exactly what many are doing, spurred by the virus that hit the frail elderly hardest. During the first 12 months of the pandemic, at least 34% of those killed by the virus were residents of nursing homes and other long-term care facilities, even though they make up fewer than 1% of the American population. The vaccine has since reduced virus-related nursing home deaths to about 1 in 4 covid-related fatalities in the United States, which have risen to more than 624,000, according to The New York Times’ coronavirus case tracker.
“Part of what the pandemic did is to expose some of the underlying problems in nursing homes,” said Nina Kohn, a professor at Syracuse University School of Law and a distinguished scholar in elder law at Yale Law School. “This may present an opportunity to correct some of the long-standing problems and reduce some of the key risk factors for neglect and mistreatment.”
According to a review of state legislation, 23 geographically and politically diverse states have passed more than 70 pandemic-related provisions affecting nursing home operations. States have set minimum staffing levels for nursing homes, expanded visitation, mandated access for residents to virtual communications, required full-time nurses at all times and infection control specialists, limited owners’ profits, increased room size, restricted room occupancy to two people and improved emergency response plans.
The states’ patchwork of protection for nursing home residents is built into the nation’s nursing home care regulatory system, said a CMS spokesperson. “CMS sets the minimum requirements that providers need to meet to participate with the Medicare/Medicaid programs,” he said. “States may implement additional requirements to address specific needs in their state — which is a long-standing practice — as long as their requirements go above and beyond, and don’t conflict with, federal requirements.”
Julie Mayberry, an Arkansas state representative, remembers a nursing home resident in her district who stopped dialysis last summer, she said, and just “gave up” because he couldn’t live “in such an isolated world.”
“I don’t think anybody would have ever dreamed that we would be telling people that they can’t have someone come in to check on them,” said Mayberry, a Republican and the lead sponsor of the “No Patient Left Alone Act,” an Arkansas law ensuring that residents have an advocate at their bedside. “This is not someone that’s just coming in to say hello or bring a get-well card,” she said.
When the pandemic hit, CMS initially banned visitors to nursing homes but allowed the facilities to permit visits during the lockdown for “compassionate care,” initially if a family member was dying and later for other emergency situations. Those rules were often misunderstood, Mayberry said.
“I was told by a lot of nursing homes that they were really scared to allow any visitor in there because they feared the state of Arkansas coming down on them, and fining them for a violation” of the federal directive, she said.
Jacqueline Collins, a Democrat who represents sections of Chicago in the Illinois State Senate, was also concerned about the effects of social isolation on nursing home residents. “The pandemic exacerbated the matter, and served to expose that vulnerability among our long-term care facilities,” said Collins, who proposed legislation to make virtual visits a permanent part of nursing home life by creating a lending library of tablets and other devices residents can borrow. Gov. J.B. Pritzker is expected to sign the measure.
To reduce the cost of the equipment, the Illinois Department of Public Health will provide grants from funds the state receives when nursing homes settle health and safety violations. Last year, Connecticut’s governor tapped the same fund in his state to buy 800 iPads for nursing home residents.
Another issue states are tackling is staffing levels. An investigation by the New York attorney general found that covid-related death rates from March to August 2020 were lower in nursing homes with higher staffing levels. Studies over the past two decades support the link between the quality of care and staffing levels, said Martha Deaver, president of Arkansas Advocates for Nursing Home Residents. “When you cut staff, you cut care,” she said.
But under a 1987 federal law, CMS requires facilities only to “have sufficient nursing staff to attain or maintain the highest practicable … well-being of each resident.” Over the years, states began to tighten up that vague standard by setting their own staffing rules.
The pandemic accelerated the pace and created “a moment for us to call attention to state legislators and demand change,” said Milly Silva, executive vice president of 1199SEIU, the union that represents 45,000 nursing home workers in New York and New Jersey.
This year states increasingly have established either a minimum number of hours of daily direct care for each resident, or a ratio of nursing staff to residents. For every eight residents, New Jersey nursing homes must now have at least one certified nursing aide during the day, with other minimums during afternoon and night work shifts. Rhode Island’s new law requires nursing homes to provide a minimum of 3.58 hours of daily care per resident, and at least one registered nurse must be on duty 24 hours a day every day. Next door in Connecticut, nursing homes must now provide at least three hours of daily direct care per resident next year, one full-time infection control specialist and one full-time social worker for every 60 residents.
To ensure that facilities are not squeezing excessive profits from the government payment they receive to care for residents, New Jersey lawmakers approved a requirement that nursing homes spend at least 90% of their revenue on direct care. New York facilities must spend 70%, including 40% to pay direct-care workers. In Massachusetts, the governor issued regulations that mandate nursing homes devote at least 75% on direct-care staffing costs and cannot have more than two people living in one room, among other requirements.
Despite the efforts to improve protections for nursing home residents, the hodgepodge of uneven state rules is “a poor substitute for comprehensive federal rules if they were rigorously enforced,” said Richard Mollot, executive director of the Long Term Care Community Coalition, an advocacy group. “The piecemeal approach leads to and exacerbates existing health care disparities,” he said. “And that puts people — no matter what their wealth, or their race or their gender — at an even greater risk of poor care and inhumane treatment.”
By Susan Jaffe
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.