Long-term care advocates and facilities are at odds on visitation policies as delta variant rises in Kansas
Dustin Baker had settled into a groove of visiting his grandfather at his long-term care home in Franklin County.
Either Baker or another family member would come by once a week — a relief, he said, after a tumultuous year that saw his grandfather involuntarily discharged from the facility for a period of time.
But last week, he was told the facility was no longer allowing indoor visits, with little communicated about the reason for the move.
"Why that is? I'm not quite sure," he said. "I tried to get an answer for that. And I wasn't really able to get a straight answer, other than 'We have this new COVID variant.'"
Kevin Bellinger, the facility's administrator, later said that while outdoor visits were preferable, a resident could have guests in their room if they couldn't occur outside, provided protocols to mitigate the potential virus spread are followed.
He acknowledged the messaging created "confusion" when county health officials increased their caution level due to rising COVID-19 case counts in the area.
"We're just really cautious," Bellinger said. "Our corporate guidelines change and we follow (Center for Medicare and Medicaid Services) guidelines as far as visitation. We want to do everything we can to allow visitation, but we have to be safe."
The dispute underscores a rapidly evolving landscape for visitation in nursing homes, with policies — like Kansas' COVID-19 situation — evolving on a weekly basis.
Groups that champion the rights of residents and families say their phones are ringing off the hook with stories of difficult-to-arrange visits, requirements that loved ones reserve a time slot and programming and activities remaining dormant.
These advocates argue the wide range of visitation policies seen throughout the state is baffling and will be a blow to the mental health of residents.
"It's like the wild wild west," said Camille Russell, the state's long-term care ombudsman. "They're just doing whatever they want to. That's not how it's supposed to be."
Long-term care facilities themselves counter they are continuing to balance the emotional well-being of residents with the ongoing need of guarding against COVID-19 — particularly in counties with low vaccination rates. Any issues in executing that balance, they maintain, are few and far between — something they feel is backed up by state data.
And as Kansas braces for the impact of the delta variant amid a rise in COVID-19 cases, there are fears that the long-term care world is about to be plunged back into uncertainty.
"There's the dilemma between quality of life and safety," said Debra Zehr, executive director of LeadingAge Kansas. "And as long as I've been involved in aging services, there's been a rub there, from the regulatory perspective. And, frankly, good intentioned people are trying to do best for the people they serve.
"So this pandemic has heightened that rub, if you will."
Current state, federal guidance allows nursing home visits
For much of the pandemic, visitation was limited in one form or another. While so-called compassionate care visits, or meetings with a loved one whose condition is terminal or declining, continued, others were largely shifted to video or phone calls.
The rollout of COVID-19 vaccines began to open up the possibility for visits without full personal protective equipment or barriers separating family members from a resident. At some facilities, in-person visits took place outdoors, while others put time limitations in place.
In March, the Kansas Department for Aging and Disability Services issued new guidance expanding what types of visits were allowable, a move that mirrored federal recommendations issued days earlier by CMS.
Those guidelines recommended outdoor visits when possible, although it said indoor visits could only be curbed in rare circumstances, such as if a person is unvaccinated, has COVID-19 or is quarantining due to possible exposure.
Zehr said these protocols are, by and large, being followed closely, as facilities work with local health officers to determine the best course of action based on COVID-19 transmission rates in their community.
COVID-19 infections continue at nursing homes across the state — data from the Kansas Department of Health and Environment shows 189 cases linked to clusters at 16 facilities in Kansas. While this is a marked decline from the peak of the pandemic, when the virus was tearing through long-term care, facilities say they have good reason to continue to be worried.
"Everybody wants to get back to visitation," Zehr said. "Will we ever get back to visitation and will we get back to life pre-pandemic? You know, the world is not going to go back to life as it is normally. There's going to be a new normal. So it is also for older people, either living in the community or living in congregate settings."
Margaret Farley, executive director from the advocacy group Kansans Advocates For Better Care, argued the visitation problem was more widespread, with some facilities coming dangerously close to infringing on residents' federal rights to have visitors.
Those protections were included in the 1987 Nursing Home Reform Act, landmark legislation that set federal standards for nursing homes nationally.
"It is not anywhere near a flimsy right. It is a real, concrete law that permits this kind of access," Farley said. "And the only reason that this has become an issue is because, obviously, of COVID."
Advocates, facilities dispute how widespread visitation problem is
Visitation policies run the gamut from facility to facility and the facilities themselves note they can fluctuate depending on the COVID-19 landscape in a given community — meaning changes can occur on a week to week basis.
At Lakeview Village in Lenexa, residents with private rooms can have as many visitors as they like at any time, although they must be screened for the virus. Visitors checking in on residents in shared rooms need to make an appointment, with the visit ultimately taking place in one of several rooms available for the purpose.
If a COVID-19 case is uncovered, indoor visitations are paused while testing is underway. If no other positive cases are uncovered, parts of the facility where the case didn't occur can reopen. The exposed area is then in isolation for 14 days.
"They're not happy, because they can't see their loved ones," said Pam Hermon, Lakeview Village's executive director. "But we're not getting angry families, if that makes sense. And I think it all comes back to communication. I mean, we're following the rules. And we've figured out what we can and cannot do."
The most objectionable elements, advocates argue, include limiting family in the amount of time they can spend with a resident. Some facilities may only allow visitation on certain days or in certain time windows, which might limit when working individuals can come. Others might set age limits, preventing children younger than 12 — who can't be vaccinated yet — from coming in to visit.
"We're still seeing policy that is restricting visitation," said Russell, the long-term care ombudsman. "For the convenience of the facility."
There is a lack of data on what facilities in the state are doing with respect to visitation, something advocates say long-term care organizations should be doing a better job of collecting.
But Zehr said that responsibility was more appropriate for KDADS. Absent firmer data, she said the concerns expressed by advocates were more "extrapolating anecdotes."
"I haven't done the polls," she said. "But I could provide a lot of anecdotes that would be counter to that supposition that the majority of nursing homes are not permitting visitation."
No citations for visitation issues from state agency
Advocates have been frustrated that KDADS hasn't taken greater action in forcing facilities to expand their visitation efforts.
Data from the agency shows no citations for visitation-related issues since January. Parties on both sides generally chalk this up to KDADS having too few inspectors, with Russell noting that the state regularly trails many of its peers in citations for residents' rights more broadly, even prior to COVID-19.
For instance, advocacy groups argue many homes didn't comply with a KDADS requirement that personal visitation plans be developed for each resident as the reopening process was underway — something industry representatives dispute.
Farley said the push to document and cite infection control problems at facilities should not cause the visitation concerns to be overlooked.
"I don't think that they're doing enough," she said. "And I do think they're limited on resources. But meanwhile back at the ranch, it is residents sitting there who could use a visit that are at the bottom of this scuffle."
A KDADS hotline for complaints from residents and their families shows only 36 visitation-related complaints filed in the past six months, a fraction of the 300-plus alleged violations of resident rights relayed via the tip line.
Those in the long-term care community have pointed to this as evidence supporting the argument that most families are satisfied with visitation policies.
But Farley said many are simply afraid of reaching out to regulators, with fears that facilities will be able to figure out which resident made the complaint.
"They don't want to open themselves up for retaliation," she said.
Long-term care world braces for delta variant spikes
Much like the rest of Kansas, long-term care facilities say they are bracing for the expected rise in cases due to the delta variant of COVID-19 — a spike that has already started in full force in the state's southeast corner, in large part due to rapid spread of the variant in Missouri.
Even in nursing homes where vaccination rates are high, issues remain. Lakeview Village is one of only a few long-term care facilities in the state to hit a CMS goal of vaccinating more than 75% of staff but they had two vaccinated workers test positive for the virus earlier this week, said Hermon, of Lakeview Village.
Zehr said LeadingAge was forging ahead in trying to educate hesitant staff members but acknowledged this is a difficult task in many parts of the state, with workers no different than other community members in counties with low vaccination rates.
What that means for long-term care is unclear, she said, noting it could further affect visitation procedures and other elements of daily life.
"It could have a chilling effect, depending on how it rolls out," Zehr said.
Baker, himself a nurse, acknowledges the continued risk for nursing homes, like the one in which his grandfather lives in Franklin County.
He received a call Thursday that he, once again, would be able to visit his grandfather. But with uncertainty ahead for older Kansans across the state with the delta variant, locking down facilities carries with it its own type of risk, he argues.
"One of the stories that I've heard from another family member is that when they stopped seeing their family member, they were continuously running around asking the nursing staff: 'Why did they leave me? Why won't they come back?'" Baker said. "You'll hear stories like that. It is really quite sad the way that we've treated our elderly."