Across Minnesota, families who take maltreatment complaints to the state Department of Health encounter dead ends and delays, according to a Star Tribune review of public documents. Yet when they take their complaints directly to the management of their care homes, many find themselves facing retaliation, even the threat of eviction.
Statewide, complaints about involuntary discharges and transfers from senior care facilities have surged 50 percent since 2012, according to public records. They are now the top reported grievance, with more than 600 complaints lodged in 2016.
Compounding the problem: Minnesota's consumer protection laws have failed to keep pace with rapid changes in residential care for seniors, and in fact have fallen behind those of many other states.
In the past decade, hundreds of assisted-living facilities have sprung up in Minnesota, accepting residents with acute health problems, including dementia. With about 65,000 beds, these facilities now serve more than twice as many elderly clients as conventional nursing homes.
Unlike federally regulated nursing homes or hospitals, the newer facilities face almost no repercussions for forcing out residents who become difficult to manage, or who simply complain.
The threat of retaliation not only terrifies residents like Estelle Schaust, it discourages them and their families from taking steps that would protect their rights or enforce public regulations.
In dozens of interviews, seniors described being threatened with eviction for acts such as installing a surveillance camera in their room, refusing costly nursing services, or discussing poor care with fellow residents. They take threats seriously because, in the tight market for senior housing, elderly Minnesotans can face waits of a year or longer for a room in an assisted-living facility.
"This is a human rights issue," said Cheryl Hennen, Minnesota's long-term care ombudsman, the state's official advocate for seniors. "Vulnerable adults with complex medical issues are being retaliated against for the simple act of speaking up. Someone needs to take the lead here and stop the practice."
Representatives of the senior care industry say facilities often have legitimate reasons for ordering a discharge. In many cases, they say, a volatile resident has put others at risk, and in others the patient has become too difficult to handle. A spokeswoman for Avinity Senior Living, owner of the facility where the Schausts lived, said it would never threaten a resident for raising concerns. She said the facility is cooperating with a Health Department investigation of the Schausts' case.
The rising number of discharge complaints underscores the need for assisted-living facilities to do a better job of explaining the level of services they provide and the process for discharge, said Jodi Boyne, a spokeswoman for LeadingAge Minnesota, an industry trade group.
"A discharge should never be abrupt or unexpected," Boyne said. "There needs to be earlier and better communication when a resident's level of care changes and [a facility] can no longer serve that person's needs."
For years, Eric Linn kept a daily journal chronicling his mother's gradual descent into Alzheimer's disease. With painstaking detail, he described Irene Linn's struggle to enjoy life even as her memory receded and basic tasks became impossible.
His early journal entries sparkle with humor and hope. They describe the pair taking leisurely country drives in his family's old pickup truck, checking the bird feeders around his farm and visiting a local cafe for coffee and ice cream.
"Lots of smiles from mom today!" wrote Linn, a plumber, one day. "She picked a purple skittle from the palm of my hand! No problem to see it."
The journal took on a darker tone in the winter of 2013 after Irene Linn moved into an assisted-living facility, Cherrywood Advanced Living, near St. Cloud. Days after her arrival, Eric Linn said, the facility ordered the Linns to come and remove Irene's pet poodle, Hunter. Without her longtime companion, Irene Linn became depressed and unresponsive. When she refused meals or medication out of confusion, staff would walk away, leaving her hungry and tired, he said.
Fearing that his mother's health was deteriorating, Eric Linn said he demanded meetings with facility managers on several occasions. Finally, he filed a formal complaint with state regulators, accusing the facility of "false advertising" by claiming it offered specialized memory care for Alzheimer's patients.
"We were paying $7,000 a month for my mother to sit alone in a room and rot," Linn said. "They had no idea how to handle someone with Alzheimer's."
Tensions between the Linn family and Cherrywood reached a crisis the week before Mother's Day in 2014, when Irene Linn wandered away from the facility and was found by a nearby homeowner. The home sent her by ambulance to a hospital emergency room — and then refused to take her back, relatives said.
Irene Linn spent the next 11 days stuck in the hospital as Eric Linn and his siblings frantically searched for a new home. After a series of sleepless nights, they finally found an assisted-living facility in Sartell, Minn., that would accept her.
Looking back, Linn said he's convinced that the facility discharged his mother, who died this spring, in retaliation for his repeated complaints.
"We were a thorn in their side and they wanted her out," he said. "If we had left her alone and never filed a complaint, then we never would have had a problem."
Cherrywood's owner, Wendy Hulsebus, said Irene Linn was discharged because the staff decided she required medical services that the small, 10-bed facility couldn't provide. She said her staff "made their best effort" to serve Linn, but her care needs had become too great.
"It's always difficult when people transition to a higher level of care," Hulsebus said. "It often happens very, very quickly and with little notice."
Hennen, the state ombudsman, said it's often those who complain about poor care or abuse who later face eviction.
"That's no coincidence," she said.
Assisted-living facilities, she added, frequently fail to provide a formal reason for eviction. Two-thirds of the discharge complaints that her office receives involve failure to provide advance notice. "Suddenly, your loved one is without a home, and you're in shock," she said. "This leaves families reeling."
Minnesota law gives seniors few protections against arbitrary evictions from assisted-living facilities. That's because they fall under the same landlord-tenant rules that govern rental properties and apartment buildings. Seniors fighting an eviction must go to county housing court, an intimidating prospect for residents who are bedridden or disabled, elder care advocates say.
By contrast, nursing homes are required to show a legitimate reason before discharging patients, and only six conditions are permitted under federal law. For instance, the law allows a discharge if the facility can show that it can no longer meet the resident's needs, or that the person's health has improved to the point where the services are no longer necessary.
Even if the client meets these criteria, a nursing home cannot evict someone without first developing a written plan detailing where and how a patient will get care after being discharged.
The absence of such protections in assisted-living facilities "makes Minnesota a definite outlier," among states, said Eric Carlson, directing attorney for Justice in Aging, a legal advocacy group in Los Angeles.
Most states have at least minimal protections, such as the right to a hearing, for seniors being discharged from assisted-living facilities. And several states, including Montana and Oregon, have mandatory criteria for discharge, similar to nursing homes.
"These newer assisted-living facilities still have a huge amount of discretion to push residents out as they wish," Carlson said. "And people don't see an obvious way to challenge [the evictions], so they just pick up and move."
That's how long Elizabeth Radichel said she got to make a major decision about her mother's future. The previous day, her 84-year-old mother, Alice Tolzmann, who has Alzheimer's disease, wandered away from her assisted-living home, the Waters on 50th, in Minneapolis. Now, Radichel said, the facility had issued an emergency ultimatum: Either transfer her mother to a special dementia unit, at twice the monthly cost, or she would be discharged the next day.
With nowhere to turn, Radichel agreed to move her mother to the memory care unit.
Within weeks, however, her mother became depressed at spending most of her days alone in a locked room for hours at a time. When Radichel complained about the lack of care and activities, she said administrators suggested that she move her mother out.
"They bullied us, plain and simple," said Radichel, a stay-at-home mother from Edina. "They knew that by creating a false crisis, by threatening to kick out my mother, that we would feel pressured to agree to their demands."
Kyle Didier, president of the parent company of the Waters on 50th, said it goes against the company's practices to threaten patients with eviction or to issue ultimatums. He said staff at the company's nine facilities "go out of their way" to have regular conversations with residents and their families about changes in their care, and would notify residents long in advance if a resident's needs become too intense or difficult to handle.
"It's never the case that we would arbitrarily decide to force someone out," Didier said.
Elder care researchers said evictions are particularly unsettling for people with dementia, including Alzheimer's disease. Each move can trigger a new cycle of fear and anxiety as they struggle to adjust to their new surroundings.
"Moving is a cardinal sin," said Judy Berry of Cokato, Minn., who started a dementia consulting business after her aging mother was evicted from 12 facilities over seven years. "Each move is traumatic."
Before her death in April, Irene Linn spent her final years in perpetual stress and uncertainty, cycling through three facilities in five years — sometimes with just a few days' notice, according to her son. With each move, she became more disoriented. Often she would act out in frustration, refusing food, showers and other basic care.
"It's far easier for these facilities to push people out than deal with a problem head-on," Eric Linn said. "They know there are hundreds more people waiting to fill that bed."
Estelle and Mathias Schaust had lived at the Champlin facility for a dozen years, and they dreamed of spending the rest of their lives in their cozy apartment, decorated with photos of their 15 grandchildren. Mathias Schaust enjoyed twice-weekly card games of Texas Hold'em with fellow residents and evening walks amid the neatly trimmed lawns and flower gardens.
In October, however, the couple moved to a new assisted-living facility in Delano. They decided they could no longer live with the threat of eviction and the breathing difficulties Estelle suffered from ever-present smoke. The experience has left them rattled, Estelle Schaust said.
"How would you like to be forced out of the home where you've lived for 12 years?"