Larry Barrett with his daughter and grandchildren at a holiday gathering. (Submitted by Dustin Baker to Kansas Reflector)
Dustin Baker knows his 79-year-old grandfather, Larry Barrett, was difficult for the staff at Richmond Healthcare and Rehabilitation, a 60-bed nursing home in Franklin County.
“He’ll yell and scream and curse, which is well within his rights,” Baker says, adding that Barrett had also reportedly grabbed a nurse by the arm and hit and pushed another nurse.
Barrett, who spent most of his adult life as a truck driver, has a diagnosis that includes dementia with behavioral disturbance, depressive disorder with psychosis, and anxiety.
But his grandson, who has a background in nursing and works at an outpatient cardiac clinic in Kansas City, says the staff at Richmond wasn’t taking the time to approach him properly.
“It all goes back to approach,” Baker says. “If you approach them on their weak side, or side that hearing is affected, they’ll get that fight-or-flight response.”
In early October, staffers at Richmond sent Barrett to Freedom Behavioral Hospital in Topeka, where he could receive medication to control his behavior.
After a couple of weeks, Baker says, his grandfather developed a medical issue and was transferred to St. Francis Hospital in Topeka. Once he was medically stable, Baker says, his grandfather tried to return to Richmond.
The nursing home refused to take him back.
Barrett has been at St. Francis ever since, and Baker hasn’t been able to find alternative placement for his grandfather. Barrett wants to go back to Richmond, where he’s lived for the last seven years.
Barrett’s case is far from unique. Families throughout Kansas are struggling with what the long-term care industry terms “involuntary discharge.”
There’s another, more gut-wrenchingly accurate term for the nursing home tactic of sending a resident to the hospital and then refusing to take them back: patient “dumping.”
“It is as distasteful as the word reflects,” says Camille Russell, who represents Franklin and several other southeast Kansas counties in the state’s Office of the Long Term Care Ombudsman, which advocates for patients’ rights.
“Now with COVID-19,” Russell says, “hospitals are even more vocal about this being a concern as they are expressing a need for every bed and staff resources.”
In September, Richmond was among several facilities spotlighted in a New York Times story about “unprofitable” residents, primarily those on Medicaid or who need extra care, kicked out of homes around the country.
After he hit another resident, Richmond staffers sent Connie Rodina’s brother to a hospital to be treated for a urinary tract infection, but then wouldn’t take him back, the Times reported. The 63-year-old, who has mental illness and dementia, stayed in the hospital for weeks while Rodina tried to find a home that would admit him.
Finally, Rodina was able to place him at Riverbend Post Acute Rehabilitation in Kansas City, Kansas — one of the state’s earliest and deadliest coronavirus clusters.
“I was terribly nervous about sending him there,” she tells me. But he’s avoided contracting the disease and workers there have kept his UTIs under control. “I think he’s doing relatively well,” she says.
Another Kansas facility made headlines this year after Aliza Katz, who lives in Florida, got a notice that her father, 80-year-old Norman Bresel, had 30 days to leave Overland Park’s Village Shalom.
The Kansas Department of Aging and Disability Services cited Village Shalom for inappropriately issuing a discharge notice.
Bresel still lives at Village Shalom, Katz tells me. “By all accounts he’s doing great.”
After the media attention, Katz says, she heard from friends, acquaintances and strangers who had faced similar situations in various nursing homes.
“It’s this huge problem going on all across America,” Katz says, “and you wouldn’t even know about it until it’s touched you directly.”
Few cases make the news, though.
‘Not everyone gets sent to hospitals’
The state ombudsman’s office responded to 97 involuntary discharges in the past year and 95 the year before that — but those are just the cases the ombudsman’s office has found out about and secured permission from family members or guardians to pursue.
The ombudsman’s office fields many more inquiries from loved ones who decide not to take action because they’re afraid of retaliation or just don’t want any trouble.
People who live in federally regulated nursing homes can only be discharged against their will for specific reasons, such as if they’re endangering others or can’t pay for their care. And there are clear rules and procedures for those discharges.
Among other things, the home must provide 30 days’ written notice — and make sure the resident has a place to move.
Sometimes, though, family members don’t even know their rights.
“In some cases, in these problematic homes, they don’t give a notice at all,” Russell says.
“Just this week, we had a resident where the facility put his things in boxes and called a family member to pick him up,” she says. “He was still using a wheelchair from a recent surgery. They took the wheelchair from him and gave him crutches.”
He was staying at a Motel 6.
“Not everyone gets sent to hospitals where they’re safe,” Russell notes.
If family members or guardians are threatened with having to move a loved one, Russell says, they should immediately contact both the ombudsman and Kansas Department of Aging and Disability Services.
“All complaints that come into the KDADS Complaint Hotline are triaged through our regional managers and investigations are initiated,” said KDADS spokeswoman Cara Sloan-Ramos. “Review and interviews are conducted with those involved in the complaint to ensure the discharge was not inappropriate.”
In Larry Barrett’s case, Richmond violated federal rules, according to an investigator whose report refers to Barrett as “Resident (R)1”:
“The facility failed to responsibly ensure open communication about the goal to discharge Resident (R)1 with the receiving facility to ensure the resident had alternative placement when the facility issued a discharge notice to the resident, while in the hospital, without all required documentation, and without giving the resident the opportunity to return to the facility to appeal the discharge decision. The facility further failed to provide evidence of the inability to meet R1’s needs.”
The home’s administrator did not respond to my requests for comment.
“The good news is that KDADS found them deficient,” Baker says of his grandfather’s case. “The sad part is the ‘facility further failed to provide evidence of the inability to meet R1’s needs.’ If they failed to meet his needs, how many other resident’s needs are they failing to meet?”
‘Afraid to rock the boat’
The other sad news is that the stricter rules and processes for involuntary discharges only apply to nursing homes that receive federal funding through Medicaid and Medicare. However, assisted living facilities, where residents sometimes don’t require full-on nursing care, are not subject to federal regulations and residents aren’t able to appeal their discharges.
And most family members wouldn’t know whether those federal rules apply, says state ombudsman Barbara Hickert.
“When you tour an assisted living facility, that marketing person is going to tell you they can take care of your loved one forever,” Hickert says. “That is frequently not true or realistic — if you develop dementia or your behavior’s unmanageable, you’ve got to go.” (She also sent along this helpful brochure explaining all the things consumers should know.)
Several years ago, she says, advocates pushed to institute a disclosure form that assisted living facilities would be required to give potential residents and family members prior to admission. Hickert says it would have “realistically told them what they can and can’t do in terms of taking care of their loved one.”
But the effort got bogged down and the opportunity was lost, Hickert says. Other states have such forms, she says, citing the Maryland Assisted Living Program’s Uniform Disclosure Statement as a good example.
“Once residents are living in a facility, this becomes one of the things they’re afraid of,” Hickert says of involuntary discharge. “They’re afraid to rock the boat.”
Now, facilities have even more reason to threaten residents with discharge if they break any of the COVID rules, Hickert says.
She tells the story of a woman whose parents were both in an assisted living center. The daughter wanted to accompany her parents to appointments with a doctor outside the facility.
“The facility said her parents would be involuntarily discharged if she did that,” Hickert says.
Hickert tells another story from early in the pandemic, when COVID rules cut off visits to homes.
“We had a resident in an assisted living facility specifically for dementia folks,” Hickert recalls. “He quickly started to lose ground in terms of his behavior. His wife, who had visited every day, kept requesting — begging — that the facility allow her to come in and help. They continued to say no, until he got to an outburst of behavior that really was problematic.”
When she heard they were about to transfer him to a hospital, his wife once again asked to come help calm him down.
“They said no,” Hickert says. “They had four uniformed police officers come in and forcibly remove him from the facility.”
Understandably, the family didn’t want him returned to that facility. They did not fight the discharge and found him a new home.
The solutions Hickert suggests are the same as those for so many other areas of our broken society.
“We need better mental health services and resources. We need better home and community-based services — and funding for those services. And better training for front-line staff,” Hickert says, noting that staffing and turnover at care facilities were problems even before COVID hit.
“I’m hopeful the pandemic will provide an opportunity for us to re-look at the structural, systemic problem with long term care in our country and put some reforms in place,” she says.
Hickert has no choice but to be hopeful.
But if our collective response to the pandemic so far is any indication, we aren’t likely to change anything.
Dustin Baker is pursuing legal action against his grandfather’s nursing home.
Meanwhile, since COVID, the Kansas Legislature made sure to give nursing homes more protection from lawsuits.
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