Sheila Nelson, at her family’s cabin in the late 1980s; she died this past March at the age of 67.
Investigating Assisted Living Homes
Should Anyone Be Held Accountable for Sheila Nelson’s Death?
November 2023
BY MARK SAXENMEYER
At the age of two, doctors diagnosed Sheila Nelson with rheumatoid arthritis, an autoimmune and inflammatory disease that became so extreme she required a high level of care “pretty much her entire life,” says Vickie Nelson, Sheila’s sister.
Sheila’s immune system would attack the healthy cells in her body by mistake, causing painful swelling and stiffness. The condition eventually overtook every joint of Sheila’s body, limiting her every movement.
“Her hands were curled and stuck in place,” Vickie explains. “Her fingernails would grow into her palm. The pain got progressively worse as she got older.
“It wasn’t always that way but she hadn’t walked since she was five-years-old. She needed help with bathroom needs, getting her teeth brushed, preparing her food, all of that,” Vickie says. Sheila relied on an electric wheelchair for mobility.
(Above) Sheila with a doctor at the University of Minnesota in 1960; (Below) Steve, Sheila and Vickie Nelson at home in 1959
Yet growing up in Columbia Heights, Minnesota, the youngest of three children, Sheila was mentally sharp. She graduated from the University of Minnesota, majored in elementary education, and went on to work for a company that helped place personal care assistants (PCAs) with people who needed them—people like herself.
“But even though she worked in that field, she still couldn’t find enough PCAs,” says Vickie.
In September, The Reporters Inc. investigated the dangerous lack of PCAs in Minnesota, and nationwide. That’s when we first learned of Sheila Nelson’s death last March. The 67-year-old had been living in a St. Paul assisted living facility after struggling, for years, to find sustained, quality PCA help that would enable her to live independently.
The Minnesota Department of Health (MDH) has just completed a months-long investigation into Gracewood Advanced Assisted Living and Memory Care of Highland (also known as Highland GW LLC), Sheila’s home since late 2017. MDH filed four new public reports, detailing “substantiated” claims of neglect and abuse at the facility in 2023. The reports contain horrifying details about incidents involving residents with Alzheimer’s, Parkinson’s and ALS.
And one of the reports spells out, in great detail, disturbing findings of neglect related to the care of Sheila Nelson in the weeks and days leading up to her death.
The Reporters Inc. also discovered that Gracewood/Highland has a years-long record of other substantiated claims—and that despite new laws designed to better regulate assisted living facilities, very little is being done by city, county or state authorities to hold anyone accountable.
“I feel certain that these injuries wouldn’t have occurred had she been able to remain at home”
For most of her adult life, Sheila was able to live on her own—but only with the dedicated help of PCAs. She usually juggled several care aides at a time, scheduling them to work different shifts with her.
Disability and other state assistance paid for about 14 hours a day of PCA help.
“That meant that they thought she probably didn’t need anyone overnight,” Vickie explains. “So she could be in her home all by herself overnight, which to me was inhumane, because here’s a person who could do nothing for herself. If there was a fire what would she do? Or what if she got sick in the night? The fear I always had was that she might vomit and aspirate or choke.”
To compensate for the remaining 10 hours, many of Sheila’s PCAs lived with her rent-free. Vickie estimates that over the course of Sheila’s life, she had more than 50 PCAs.
“There were many I didn’t know about because they wouldn’t last long, but she had others that became life-long friends,” Vickie says.
The PCA work could be strenuous, and stressful. “The lifting part eliminated a lot of candidates right away,” Vickie says, “because you had to be especially careful when moving her so you didn’t hurt her. You couldn’t just plop her. You had to have more control as you were lifting.”
Sheila would need to be lifted, for example, from her bed to her wheelchair, or to a toilet.
(Above) Sheila with college friends who also served as her personal care assistants (PCAs) in 1978; (Below) Sheila’s graduation from the University of Minnesota in 1980
Despite her limitations, Vickie says Sheila led a full and happy life. She remembers Sheila telling the state caseworker, who was assigned to monitoring Sheila’s condition, that on a scale of one to 10–with 10 being “wonderful”–Sheila rated her life to be a nine.
“She didn’t even hesitate, and I just gave her this quizzical look like ‘how can you possibly think you’re a nine?’” Vickie remembers. “But I was looking at her life from the standpoint of what she couldn’t do and what her challenges were, and she was looking at it from the perspective of all the friends that she had, the support of her family, and all the love that she had in her life.”
Yet in 2017, shortly before her 62nd birthday, Sheila moved out of her home and into an assisted living facility because of the continuous, and increasing, lack of available PCAs.
“She was spending every day looking for people,” Vickie says.
It was always hard to find good candidates, in part, because PCAs aren’t typically paid much more than minimum wage.
“She went and visited many care facilities but when most saw her level of care they turned her away,” Vickie explains. “So, she chose this place, Gracewood of Highland, basically by default.”
Sheila paid about $900 a month, from her Social Security allocation; Vickie says the rest of Gracewood/Highland’s fees were covered by Minnesota’s Community Access for Disabled Inclusion (CADI) waiver that provides “funding for home and community-based services for children and adults who would otherwise require the level of care provided in a nursing facility.”
In all, Vickie estimates Gracewood/Highland was paid upwards of $7,000 a month to care for Sheila.
“One has to wonder, what portion of this money actually goes to direct care?’” asks Eilon Caspi, a national health safety advocate and adjunct professor in the School of Nursing at the University of Minnesota.
The problems at Gracewood/Highland started right away.
“They said it took too long to take care of her,” Vickie explains. Even though she says the facility was home to fewer than 35 residents, most of whom were older adults and not disabled, “They could only give her 15 minutes to get her up and 15 minutes to put her to bed, and there was absolutely no way that was enough. If they just looked at her they’d be able to tell that.”
Vickie continues, “They had advertised that they had ‘heavy care suites.’ They said they provided a higher ratio of staff to meet the needs of people who had greater needs, who would take longer. But that wasn’t the case at all.
“They also weren’t always good about giving her the meds she needed. There was even one person who told her she didn’t need them, and didn’t give them to her. I mean, the audacity,” Vickie says. “They would tell her she wasn’t in as much pain as she said.”
Vickie claims Gracewood/Highland even tried to evict Sheila. “They tried to basically kick her out a couple of different times,” she explains. “I just threw up my hands and said, ‘If you want her out, you have to find an adequate place for her to go.’ They couldn’t find a nursing home to take her because they said she didn’t have medical needs that required the level of care that nursing homes provide. Hers were physical needs.”
Gracewood Advanced Assisted Living and Memory Care of Highland is located in St. Paul, Minnesota. The signs on and around the facility say Gracewood Senior Living, while the Minnesota Department of Health refers to it as Highland GW LLC.
Instead, Vickie says Sheila was directed to facilities that catered mainly to people with cognitive, not physical, concerns. “So she stayed where she was,” Vickie says.
Sheila’s caseworker, who was responsible for allocating the funding for her care, couldn’t provide alternative living arrangement ideas for Sheila either. Vickie says she told the caseworker, “‘Come on, Sheila’s not the only person in Minnesota in this condition and with these kinds of needs. Where do these people go?’ No one seemed to have an answer.”
The Reporters Inc. reached out to Sheila’s caseworker for comment but did not receive a response.
Vickie says Sheila had never broken a bone before moving into Gracewood/Highland, but during the six years that she lived at the care facility, she suffered two bone fractures due to staffers lifting her improperly.
Those injuries left her bedridden and in need of higher doses of pain medication. She lost weight and became very frail.
“She’d never had these types of issues before and I feel certain that these injuries wouldn’t have occurred had she been able to remain at home with PCA care,” Vickie insists.
“It would get better for a while if Sheila and I went in to talk to management,” Vickie says, and they’d say they were going to fix things. But then there was really no consistent follow-through.”
She adds, “There were several staffers that were really great and cared, and they would do their best and take their time. And then there were some others that just wanted to be in and out of her room as fast as possible.”
Staff and management turnover, Vickie says, were frequent.
“They pay garbage to the people who are working there in these places, doing the direct care, says Misti Okerlund, a Minnesota disability rights attorney. “They might be making $17 an hour if they’re lucky.”
“Assisted living facilities have made a big effort to hire more part time employees with no benefits because they make more money that way,” says Jean Peters, a registered nurse who has advised the Minnesota Department of Health’s (MDH) Home Care and Assisted Living Advisory Council. “Yet they‘ve never really hired enough people to provide the actual care that people are paying for because that wouldn’t make the owners money. The care would improve if more of the profits were shared.”
According to Caspi, “The reality is that because there are often poor staffing levels, and a lack of specialized training, supportive guidance from qualified managers, a living wage, affordable health care insurance, medical and family leave, child care support, and most importantly a lack of basic respect to many of these hard workers, a large number of them will burn out and quit their jobs. They often work in a broken for-profit assisted living care system.”
Still, Vickie says she never felt that Sheila’s life was in danger. And never once did Sheila express an urgent need to leave the facility. “She’d say, ‘Well, with the exception of a few people, it’s OK.’ She actually told me, ‘I’m just glad I don’t have to go and find PCAs on my own anymore.’”
“I need to do something before my girlfriend ends up dead”
In early March 2023, Sheila was rushed to a hospital intensive care unit (ICU) for septic shock, related to Norovirus.Vickie was out of town at the time, spending the winter in Arizona.
“She had to call 911 on her own,” Vickie says, “because she had this severe diarrhea and she didn’t feel well and nothing was being done to help her. You’d think they would’ve had her taken to the hospital themselves so they wouldn’t have to keep cleaning her up.”
While Sheila was hospitalized, her friend Mary Bergerson sent a letter to the Minnesota Attorney General’s Office, voicing her concerns about the care Sheila had been receiving at Gracewood/Highland.
“This care facility continues to be neglectful, incompetent, disrespectful and downright dangerous in her care,” Bergerson wrote. She called Sheila “extremely fragile” and stated, “I need to do something before my girlfriend ends up dead…”
The AG told Bergerson that her concerns fell under the jurisdiction of MDH’s Office of Health Facility Complaints and urged her to contact them.
Both Bergerson and Vickie did so.
When doctors determined Sheila was well enough to return to Gracewood/Highland, after 14 days in the hospital, Vickie spoke with her sister on the phone. “She was able to carry on a conversation but she wasn’t cognitively quite with it. She couldn’t remember where I was, when I was returning, and she seemed really sad that I wasn’t on my way back,” Vickie recalls.
“And that just kind of got me because she’d never been like that before. I think she wanted somebody close to her because she was perceiving that she wasn’t well. And maybe she was thinking she wouldn’t be around when I got back.
“Then I told the doctors, ‘She’s not herself yet. I can tell by talking to her.’ But they insisted that they had checked her out and she was at the level of self-help that she’d been before, and she was ready to go back.”
Sheila and Vickie Nelson, at Sheila’s townhouse in Minneapolis, Minnesota in 2015–two years before Sheila moved into assisted living at Gracewood/Highland.
After Sheila returned to Gracewood/Highland, Vickie says she phoned her sister several times and left messages, but never received a return call.
Four days later, facility staff contacted Vickie to tell her that Sheila was “totally unresponsive and they were sending her back to the hospital. To me, if she was totally unresponsive, that meant they hadn’t been doing their required two-hour checks. They should have been noticing something.”
Vickie recalls one hospital physician telling her, “’She might not make it through the night, with her blood pressure as low as it is. Her heart could stop any time.’ The doctors wanted to know how far we wanted to take her treatment. We had them do medication kinds of interventions but it didn’t help.”
Sheila wasn’t unconscious, but she could barely communicate.
“Our brother was there with her and he held the phone up to her so she could hear me,” Vickie says. “I told her I was really sad I wasn’t there. And that I knew she was sick and I told her that it was OK if she…if she needed to leave me. And I said, ‘Feel free to spread your angel wings and fly. Even though I want to be there with you, I can’t be there now. So if it’s your time, you go ahead.’”
Vickie’s brother told her that Sheila’s eye “twitched a little bit” as Vickie spoke, but neither are sure if she comprehended Vickie’s goodbye.
“She never even saw any thread of hope for accountability”
Sheila Nelson passed away at age 67 on March 18, 2023, one day after returning to the hospital.
Vickie says the “immediate cause of death” was respiratory failure. The “underlying cause” was encephalopathy, a disease that affects brain structure or function.
Vickie and Sheila’s friend Mary Bergerson both say they weren’t contacted by an MDH state investigator until well after she died. And they point out that MDH’s public record of its probe into Gracewood/Highland indicates that it didn’t begin the investigation until June 27, 2023, more than three months after Sheila’s death.
“That sounds very problematic,” says Caspi, calling the timeliness of an MDH investigation “of critical importance.”
He points out that a three-month delay can hinder an investigator’s ability to collect adequate or sufficient evidence regarding the incident, staff turnover can limit the ability to interview all the necessary care home employees, and a care provider could potentially engage in a “concealment or alteration of evidence.”
“It’s heartbreaking to hear because she never even saw any thread of hope for accountability,” says Caspi. “It’s terrible, just terrible.”
“I was filled with many different emotions,” says Bergerson. “Mostly anger and heart-crushing sadness. I’m both angry and sad that Sheila had to die before somebody listened and tried to figure out what was going on.”
Bergerson, who has cerebral palsy and also relies on PCAs for her independence, fears she, too, might end up having to move into an assisted living facility one day.
“I wonder how many other people have been forced out of their homes because there weren’t enough PCAs to go around,” she says, “and then have been injured or have died at care facilities.”
In her March 1, 2023 letter to the Minnesota Attorney General’s Office, pleading with it to intervene on behalf of her friend Sheila, Mary Bergerson (above) wrote, “I am very tired of seeing Sheila get hurt in the name of doing things fast, so they can make a profit. Being short-handed is no excuse for hurting their patients!”
On August 29, 2023, MDH publicly released a “State Rapid Response Investigative Public Report” from its Office of Health Facility Complaints, indicating that it had “investigated an allegation of mistreatment” at Highland GW LLC, had “determined neglect was substantiated,” and that “the facility was responsible for the maltreatment.”
The report doesn’t list Sheila Nelson by name. It only refers to a “vulnerable adult” from Gracewood/Highland who couldn’t be interviewed for its investigation because the resident is now “deceased.”
Garry Bowman, the public information officer for MDH Health Systems Bureau, tells The Reporters Inc., “Since the name of the vulnerable adult is not public information, MDH cannot confirm” whether it specifically pertains to Sheila.
However, the state investigator who evaluated the facility and interviewed Vickie and Mary Bergerson also provided them with the completed report. Both women have confirmed to The Reporters Inc. that the subject of the report is indeed Sheila Nelson.
The report indicates that an investigation of the facility was conducted between June 27, 2023 and August 7, 20023 and it lists numerous “investigative findings and conclusions.
Among them:
“A review of facility grievances identified multiple concerns with staff not following the resident’s plan of care, not providing prompt toileting assistance, extended call light response times, and the call light being silenced without checking on the resident.”
Vickie says, “Reading about the call light angers me. That issue had been going on ever since she was there and when we brought it up to management they would always say they were working on it and that they were going to fix it. But they never did that.”
She continues, “When Sheila would pull the call light it was usually because she was on the bed pan. Somebody had put her on that, so they should have known they needed to come and take her off.”
The MDH report continues, “…the resident’s medical record included documentation of incidents such as the resident being dropped during a transfer from a mechanical lift resulting in injury, significant pain and injury sustained while being assisted off the bed pan, and bruises of unknown origin.
“Despite documentation of staff’s awareness of these incidents and injuries, nursing staff failed to re-assess the resident, failed to document and monitor the areas of injury, failed to initiate further investigation into the root cause of the incidents, failed to follow up with staff involved in the incidents, and failed to implement interventions to prevent further occurrence.”
“I really thought the staff was more on top of it,” says Vickie. “It’s just really sad.”
“A care home with so many dangerous and harmful failures, on an on-going basis, could be characterized as one that provides worthless care,” says Caspi.
Eilon Caspi is an adjunct clinical professor at the University of Minnesota’s School of Nursing and an assistant research professor at the University of Connecticut’s Institute for Collaboration on Health, Intervention, and Policy.
The MDH report continues, “During an interview, the resident’s case manager…recalled one incident where only one staff member was available and when assisting the resident, a popping sound was heard, and the resident was ‘bed ridden for a while.’”
“That resulted in a compression fracture in two discs in her back,” Vickie says. “That was different from the lift injury. She stayed in bed for six weeks.”
The report indicates that interviews with facility employees revealed “concerns with staffing and not having the adequate number of staff scheduled to provide the required amount of assistance for resident care. Staff indicated they had reported these concerns to management but received no response.”
“It starts with top leadership,” says Caspi. “The owner of the care home either allocates or doesn’t allocate the necessary, essential resources.”
The report then goes on to list a series of additional concerns about the call lights that were noticed first-hand by the investigator:
“During the onsite visit, the investigator observed staff re-set call lights from the hallway without entering the resident room. When the alarm was silenced in the hallway, it did not re-set the switch in the resident’s room, leaving the resident unable to re-activate their call light to continue to request assistance.”
“It really sounds like the call lights were purposely turned off or ignored for the most part,” says Kristine Sundberg, the Executive Director of Elder Voice Advocates, a Minnesota nonprofit devoted to preventing abuse, neglect and exploitation of vulnerable adults.
“Unreal,” she adds. “This poor person was left on a bed pan for hours. God, can you imagine the suffering? It’s just horrific.”
The report continues, “Staff interviewed indicated call lights could be re-set and cleared by facility staff from outside of the resident’s room, with no record of the light being activated. Staff reported they had witnessed other ULPs (Unlicensed Personnel) shut off call lights from the hallway without checking on residents.”
“I can’t believe that no one is watching, that this is allowed to happen,” says Michelle Lacy, an acquaintance of Sheila, who also relies on PCAs. “I don’t know how people do that to another person.”
Like Mary Bergerson, 57-year-old Lacy also has cerebral palsy and fears that the PCA shortage may one day force her into an assisted living facility as well. “I don’t want to find myself in a situation like that,” she says.
“Who was the medical professional in this assisted living facility watching over all this?”
As for details about what led to Sheila’s March 2023 hospitalization, the report states, “Facility staff failed to monitor and assess the resident following a septic change in condition and the resident was admitted to an intensive care unit (ICU) for septic shock related to Norovirus.”
The report describes sepsis as “a life-threatening condition related to the body’s response to infection” and Norovirus as a “very contagious virus that causes vomiting and diarrhea.”
The MDH report then states that hospital records indicated “the resident” experienced nausea, vomiting, and diarrhea for several days before being admitted to the hospital. But there was no mention of those ailments in the resident’s Gracewood/Highland medical documents.
In addition, “other residents at the facility were also ill” and “hospital staff were unable to contact the facility for further information about the resident.”
“Where was the nurse in all this?” wonders Okerlund. “Who was the medical professional in this assisted living facility watching over all this?”
“I think this speaks to the fact that the nursing profession is practically missing in action in the assisted living sector,” says Caspi. “If you had a registered nurse there who was experienced and qualified and dedicated, this would have never happened.”
Sheila’s many passions included traveling on cruise ships (above, in the early 2000s), as well as square dancing with “The Perfect Squares,” a group of performers who danced with their wheelchairs (below, in the 1980s).
According to Minnesota’s “Minimum Assisted Living Facility Requirements” statutes, all care facilities must “provide staff access to an on-call registered nurse,” but there is no mandate for any kind of medical professional to work regularly inside a facility.
“The majority of the people working in assisted living are unlicensed personnel that have a total of eight hours of training,” says Peters.
The statutes simply require “that one or more persons are available 24 hours per day, seven days per week, who are responsible for responding to the requests of residents for assistance with health or safety needs.”
The qualifications for such persons? According to the statutes, staffers must simply be:
* Awake
* Located in the same building, in an attached building, or on a contiguous campus with the facility in order to respond within a reasonable amount of time
* Capable of communicating with residents
* Capable of providing or summoning the appropriate assistance
* Capable of following directions
“You’ve got all these people who are untrained and unprepared,” says Okerlund. “We should have people working there who are actually specialists, who can handle specific issues. It’s just not built into our system now.”
Yet it used to be far worse.
Minnesota was the very last state in the nation to require that assisted living facilities be licensed.
According to Sundberg, “There were some regulations before but it wasn’t under a licensing scenario and they were very ineffective and enforcement was shoddy. It wasn’t until we came on to the scene,” she says about Elder Voice Advocates, “and started to tell the stories of what’s really happened in these places that it finally got the ear of the legislature.”
The Assisted Living Licensure law took effect just over two years ago, in August 2021, and Sundberg and Peters served on the MDH committee that helped develop and pass it.
Kristine Sundberg (left) is the executive director of the Minnesota-based nonprofit, Elder Voice Advocates, and (right) Jean Peters is a registered nurse and founding member of the organization.
Among the new rules they’re most proud of: “No longer can care home sales people promise services that aren’t delivered to residents,” Peters says. “And there has to be an assessment of every resident prior to move-in to find out what services are needed.”
Another important change: “They can no longer lock residents in their rooms,” says Peters, “which is what they were doing at night when they were short-staffed. Can you imagine what a fire hazard that was?”
Sundberg says she fought hard for new rules to stop “retaliation.” She explains, “People were afraid to speak up. If they talked or complained to management things would just get worse. That was standard procedure in a lot of these places and we got the law to prohibit it.”
Caspi points to a just-published study he conducted for the Long Term Care Community Coalition entitled “They Make You Pay”: How Fear of Retaliation Silences Residents in America’s Nursing Homes.” It includes evidence from 100 care facilities in 30 states to demonstrate the ways in which staff members verbally and physically retaliate against residents for voicing care concerns and complaining about being mistreated.
Sundberg also says “termination” was another common problem that licensure helped fix.
She explains, “When people run out of money to pay these facilities, they have to go to some kind of public program where reimbursement isn’t as good. Then all of a sudden they hear, ‘Oh, we just don’t have the means to take care of you anymore. Your needs have gotten to be more than we can handle.’
“That was just baloney. They wanted to fill that bed with a private-pay person and make more money. They could kick you out. But now there are laws to stop it.”
Still, Sundberg and Peters say the new laws aren’t nearly as tough as they should be.
“They haven’t put a dent in the cases of abuse and neglect going on,” says Sundberg. “And that just tells me that enforcement isn’t strong enough.
Case in point:
A month before Sheila became sick with Norovirus, MDH completed a mandatory evaluation of Gracewood/Highland, on February 9, 2023. The purpose was to assess compliance with the new state licensing statutes.
MDH noted several violations during its evaluation, including:
* The facility failed to meet the requirement that “at least three nutritious meals daily with snacks be available seven days per week.”
* The facility “failed to maintain the physical environment of the facility in a continuous state of good repair and operation.”
The report describes dirty and stained carpeting in one resident’s room, an “unsanitary odor” coming from a chair in another resident’s room, and “no carbon monoxide alarms and/or detection systems were provided near or in sleeping rooms…”
In the basement, the water supply in plumbing fixtures in the maintenance supply room and a restroom had been turned off resulting in “dried-out plumbing traps” that “will continuously expose the building environment to sewer gas creating unsafe and health risks to residents and employees over time.”
* The facility failed to provide “all required content” in its documented fire safety and evacuation plan. There was no plan identifying the building layout or the number and location of resident sleeping rooms, and no plan outlining fire protection procedures for residents.
* The facility “failed to establish and maintain an infection control program that complies with accepted health care, medical, and nursing standards for infection control.”
As evidence, the report says a facility staff member was observed cleaning a resident’s face, chest, back and buttocks without washing or sanitizing her hands.
“That’s how it spreads,” says Peters. “It goes from a doorknob to a food service person who touches the doorknob and then to the food. It’s awful. Elder Voice fought to make sure that there was an infection control standard. There was never one before licensure.”
In a separate “Food and Beverage Establishment Inspection Report,” conducted in the same time period, MDH cited Gracewood/Highland for failing to provide a “temperature indicator” in its dishwashing operations to ensure proper sanitation, failing to provide adequate hand drying mechanisms at handwashing sinks, failing to clean cooking and baking equipment “at least every 24 hours,” failing to store all equipment, utensils, linens and other items in a clean and dry location, and failing to employ a certified food protection manager.
The report states that the violations “had the potential to have harmed a resident’s health or safety,” and were deemed to be “pervasive or represent a systematic failure…”
“I struggle with the finding that there was only potential to cause harm,” says Peters. “If you have improper infection control and it’s throughout the building, what do they mean they didn’t cause harm?”
According to the Mayo Clinic, “Noroviruses are highly contagious. They commonly spread through food or water that is contaminated during preparation or through contaminated surfaces. Norovirus infection occurs most frequently in closed and crowded environments. Examples include hospitals, nursing homes, child care centers, schools and cruise ships.”
Perhaps surprisingly, while the MDH report indicates that state statutes permit MDH to “assess fines and enforcement actions based on the level and scope of the violations,” the report then declares, “however, no immediate fines are assessed for this evaluation of your facility.”
“It’s just ridiculous how little money that these providers are actually fined,” says Okerlund.
The MDH report also informs Gracewood/Highland that it would be given between seven and 21 days to correct or fix each violation.
But it then states–that according to Minnesota statutes–“The licensee is not required to submit a plan of correction for approval.”
“There is no requirement that they even have to say they’re going to fix it,” says Peters.
“There should also be a criminal investigation”
In a “Summary Statement of Deficiencies,” the MDH report involving Gracewood/Highland’s care of Sheila Nelson says “the licensee failed to show they met the requirements of licensure” and also failed to develop and implement “current policies and procedures as required with records reviewed. This had the potential to affect all residents, staff, and visitors.”
The report also states, “Facility nursing and administrative staff who worked at the time the incidents occurred were no longer employed at the facility and declined to be interviewed.”
“This is a very common occurrence,” says Peters, who is also a founding member of Elder Voice Advocates. “The perpetrator will get contacted and they won’t answer. And then what, they move on to another facility?”
Notably, nowhere in the report does it state that the death of the “vulnerable adult” was caused by the care, or lack of care, she received.
Caspi says, “It’s not uncommon for MDH and other state survey agencies to not draw a direct line between the evidence collected by the state surveyor, during the inspection and complaint investigation, and the bad outcome for the resident.
“It’s often quite obvious but not explicitly stated, which is frustrating.”
Peters adds, “They need an overwhelming amount of evidence to determine a substantiated report but they’ll only state a finding, like maltreatment, neglect, abuse etc.”
She says unless the family of the care facility resident asks for an autopsy or can somehow get the medical examiner to look at the resident’s records with the facility, the cause of death is often just attributed to the condition or disease that brought the resident to the facility in the first place.
“The long-term care industry has very deep pockets and is very litigious,” says Sundberg. “This results in a reluctance of government agencies to antagonize them for fear that they will be taken to court.”
The report concludes that “no action” has been taken by Gracewood/Highland to address any of the allegations addressed in its investigation.
Bowman, the MDH Health Systems Bureau PIO, tells The Reporters Inc., “As a result of our investigation, MDH imposed a conditional license on Highland GW LLC. The conditional license prohibits the provider from admitting additional residents until they can demonstrate progress to correct their systems.”
Vickie responds, “If they truly do follow up, I’m hoping they address the understaffing, I’m hoping they address the call light system, the record keeping, the staff training. I think they should have some kind of financial consequence. Otherwise what’s the incentive to not go back to their old ways?
“But on the flip side if the fines are so much that they put them out of business, you’ve got 30-some people who have to be placed somewhere else.”
She continues, “And I think the state should have to follow them judiciously for a period of time, like several years, to make sure things are under control and that they don’t just slap a Band-Aid on and go back to whatever they were doing before.”
According to Bowman, “Highland GW LLC is also required by this conditional license order to get an outside consultant to help them address assisted living resident care and was subjected to fines for substantiated maltreatment findings.”
Gracewood/Highland was fined $1,000.
“The Minnesota legislature and Department of Health are reluctant to fine at a level that is really a deterrent,” says Sundberg, “and so it just lets these people keep on with this horrible, abusive behavior.”
Bowman says that whenever MDH issues a “harm-level correction order” to an assisted living facility, the state is statutorily required to conduct an onsite follow-up visit to determine whether the facility actually implemented measures to correct the violations identified in the correction orders.
“In this matter, MDH will conduct a follow‐up complaint investigation at an unannounced point in time within 90 calendar days,” he explains.
Gracewood/Highland’s conditional license is now set to expire on December 14, 2023.
MDH says it may pursue additional enforcement actions, including a temporary suspension or revocation of the license if it identifies any further widespread care violations.
“Again, no consequences,” says Vickie. “I did call the state after I read the report and no one ever called me back.”
The loves of Sheila’s life were her cherished pups.
Rufino Lorenzo, the Vice President of Marketing and Sales for Gracewood/Highland says the facility’s leadership can’t specifically comment on MDH’s findings “because the matter is not closed.”
A written response Lorenzo sent The Reporters Inc. states, in part, “Providing each and every resident the highest quality of care is our mission every day, and we take any report concerning a resident’s care very seriously…We continue to work closely with the Minnesota Department of Health on our plan of correction to ensure that we are fully compliant with all laws and regulations.”
“He’s got a canned statement there that he makes,” Vickie responds. “It doesn’t mean anything because obviously for the people who have filed these complaints on behalf of their loved ones, they’re not seeing that.”
Lacy believes that, at the very least, Gracewood/Highland should have its license revoked. She points to a similar situation involving Bridges MN, a large provider of services to Minnesota adults with disabilities.
Bridges had about 400 clients and more than 90 group homes statewide when the Minnesota Department of Human Services revoked Bridges MN’s license in June 2022 because of “serious and repeated” violations and findings of maltreatment involving vulnerable adults. Bridges was later acquired by a different company, saving it from being shut down or taken over by state regulators.
“There should also be a criminal investigation,” says Lacy.
She believes individual staff and management employees with Gracewood/Highland should be charged and, based on the MDH report, “there’s enough there to shut this place down.”
But Bowman points out, “MDH’s role is civil in nature, not criminal.”
He explains, “When MDH conducts a survey or performs a maltreatment complaint investigation that discovers possible criminal acts, MDH shares its findings with local law enforcement and city and county attorneys for further investigation and potential prosecution…The report states copies of the findings were provided to the Ramsey County and St. Paul City Attorneys and the St. Paul Police Department Attorney. This is for possible further criminal investigation.”
Portia Hampton-Flowers, the Deputy City Attorney for the St. Paul City Attorney’s Office, emailed The Reporters Inc. to state, “The City Attorney’s Office would get involved if the case has any misdemeanor prosecution potential. Because this case involves felony-level conduct (an allegation of serious injury due to neglect) any potential charges fall within the jurisdiction of the Ramsey County Attorney’s Office.”
In turn, Dennis Gerhardstein, the Public Information Officer for the Ramsey County Attorney’s Office emailed, “We will consult with law enforcement on this case as the investigation progresses. Once they present it to our office, we will review the evidence for any felony level charges.”
And as for law enforcement, Molly McMillen, the Public Information Manager with the St. Paul Police Department, emailed, “We sympathize with a family that is grieving and seeking answers. We would want the same for our own family members. Now that we have the full MDH report, it will take time to review and include consultation with the Ramsey County Attorney’s Office on possible criminal charges.”
“The fact that they’re passing the buck speaks for itself,” says Caspi. “I don’t know how it’s not criminal. Taken together, the failures identified by MDH could potentially be characterized as gross neglect. This is not just human error.”
“If they can investigate, great,” says Vickie. “I personally don’t have the energy to push them since it’s not going to make a bit of difference for my sister. Still, I don’t want this to happen to other people so I’m hoping that they pursue it.”
“Nothing is going to happen,” says Peters. “I can tell you right now that nothing is going to happen.”
“These cases don’t usually proceed criminally because people with disabilities are discriminated against,” says Okerlund, “by our society, by police departments, by everybody who is supposed to be holding other folks accountable.
“Abuse like this happens all the time in this state, in this nation, and it gets swept under the rug like nothing ever happened. They just don’t get prosecuted the way that they should because there is such ageism and ableism in our culture.”
“There’s an attitude or a mindset that these people are too old or sick and they’re going to die anyway,” says Dave Kingsley, the Executive Director of the Center for Health Information & Policy, a Kansas City, Missouri-based nonprofit dedicated to health care research, education and advocacy.
“It’s like ‘we’ve got more important things to worry about’ and it’s just horrible.”
Misti Okerlund (left) is a Minnesota disability rights attorney and (right) Dave Kingsley is the Executive Director of the Missouri-based nonprofit, Center for Health Information & Policy.
“But if this happened in a child care setting, to a three-year-old toddler, the state would shut it down the same day,” says Caspi.
Kingsley believes it would take a “real, real ugly situation for a corporate executive to be charged.”
He explains, “Typically, individual low level employees who assault patients, steal, or otherwise do something criminal are the ones who are charged—if they get caught and a case is pursued by the family rather than buried by the owners.”
Kingsley points to a 2008 case at an Albert Lea, Minnesota nursing home, in which two teenage care assistants were criminally charged with assault for poking, taunting, spitting into the mouths, and groping the breasts and genitals of residents with Alzheimer’s and dementia in the facility–until they screamed.
The 18- and 19-year-old aides took a plea deal and were each sentenced to 180 days in jail.
“Not so for the owners and managers,” Kingsley says. “They weren’t charged with any kind of criminal liability or negligence.” They claimed they were unaware of the abuse as it was occurring, even though it was alleged to have gone on for months.
MDH has also sent its Gracewood/Highland investigation findings on to the Minnesota Board of Executives for Long Term Services and Supports, and the Minnesota Office of Ombudsman for Long-Term Care.
Cheryl Hennen, the State Ombudsman for Long-Term Care, emailed The Reporters Inc., stating, “The environment itself at this location, from the experience of the Regional Ombudsman (RO), has for the most part looked clean and staff are friendly when the RO is on site.
“As far as casework (there are) some issues regarding the call light system or lack thereof. General opinion is the communication between administration and direct care staff needs improvement.
“(As) an example, the leadership in charge, when presented with a problem from staff, would commonly respond the problem isn’t resolved because they were waiting on information from corporate office.
“The RO continues a presence as time allows to monitor the concerns. I can’t go into further detail as far as ‘concerns’ as it may reveal the person affected.”
Vickie responds, “I had conversations with the previous ombudsman and Sheila had several conversations with her as well. And that ombudsman said, ‘Well, you’re not the first person who has called me with issues like this about this facility.’ So I can’t believe they have a clean record.
“The ombudsman’s office tries to do the work but they’re so under-resourced,” says Okerlund.
Although MDH’s report is available to the public online, Steve Jobe, the Executive Director of the Board of Executives for Long Term Services and Supports (BELTTS), emailed The Reporters Inc., stating, “We do not comment on any pending complaints per MN Data Practice Act which classifies investigative data as confidential.”
Our request for clarification of his response went unanswered.
MDH’s Bowman says BELTSS was sent the report “due to the role of a Licensed Assisted Living Director” in the matter.
Caspi wonders why the Minnesota Board of Nursing wasn’t also sent MDH’s findings. “The elephant in this investigation report is what appears to be lack of adequate attention to a nurse’s role in all of this terrible and ongoing neglect of healthcare,” he says.
Bowman says the Board of Nursing is notified “whenever a nurse is individually held responsible for the maltreatment” but that “these separate referrals are not public information.”
“The fight we’ve had forever is ‘show us the money'”
According to the Centers for Disease Control and Prevention (CDC), disability-associated healthcare expenditures in 2015 accounted for 36 percent of all healthcare expenditures for adults residing in the United States, totaling $868 billion.
Medicare paid $325 billion, Medicaid paid $277 billion, and non-public sources paid $266 billion.
According to the CDC, Minnesota’s “expenditures per person with a disability” were $21,267, ranking it fifth highest in the nation, behind Washington D.C. New York, Massachusetts and Connecticut.
“But with all that spending we have a terrible record when it comes to investigating maltreatment reports,” Okerlund says.
According to a June 2021 report released by the Minnesota Department of Human Services (DHS), “less than one quarter of all cases referred to adult protective services in Minnesota were advanced for investigation…which is significantly lower than the national average” of 62 percent.
The investigation rates fall even lower for racial and ethnic minorities.
“That’s consistent with what we’ve observed for assisted living from day one,” says Sundberg. “Precious few get investigated.”
Between December 2021 and November 2022, Minnesota DHS received 7,177 reports of alleged maltreatment—abuse, neglect and financial exploitation—of vulnerable adults.
But during that time period the state deemed that only 8 percent of those reports necessitated an out-of-office investigation, and only 33 percent of the cases investigated were substantiated.
“That’s just atrocious,” says Okerlund.
MDH’s Bowman says data specific to complaints about the state’s 2,208 licensed assisted living facilities is “not readily available. I have been working with Minnesota IT Services (MNIT) to pull those data…but have not been able to get it yet and I’m not sure when I will.”
But Bowman and MDH were able to provide complaint data specific to Minnesota’s 345 federally-certified nursing homes.
From January 2019 to September 2023 (a four-year, nine-month time period), 41,907 complaints were filed against nursing homes in the state.
Of those complaints, Bowman says 19,172—or less than half—were deemed worthy of a formal MDH investigation.
And of those, less than a third—or 5,859—were substantiated.
“The care facility industry is getting away with far more than the tobacco industry ever got away with,” says Kingsley, “and is being treated much better. Much, much better.”
He continues, “There are no guard rails. The state agencies which are supposed to oversee the facilities don’t really have enough competence, and we don’t have real pushback.”
Instead, says Caspi, the pushback is coming from care facility owners.
“They will fight any effort to regulate them,” he says. “They fought tooth and nail with many well-funded lobbyists against the passage of the licensure of Minnesota’s assisted living facilities. And they were able to water down a lot of the proposals.”
“And they’re paying those lobbyists with the money that they’re making off the backs of these people in their care,” says Okerlund. “With the money that’s coming to them from federal and state taxpayer dollars. With Medicaid and Medicare money.”
”As a for-profit organization they operate on a business model, and not on a care model,” says Sundberg.
“They’re always crying ‘Oh my gosh, financially we aren’t making it and we just can’t get staff,’” says Peters. “But if you try to look into the profits of these facilities, it’s very difficult to find out how much income they make. You can’t find anything.”
This lack of transparency was noted in a 2017 report by Minnesota’s Office of the Legislative Auditor (OLA), titled “Home and Community-Based Services (HCBS): Financial Oversight.”
The report states, “Although some legislators wanted us to examine HCBS providers’ profit margins, lack of financial reporting requirements and inconsistent data collection across providers prevented us from doing so.”
“The fight we’ve had forever is ‘show us the money,’” says Kingsley. “Most of these facilities are owned by a closely held company, usually set up as some kind of partnership, and they set up LLCs (Limited Liability Companies) all over the place and make it very complicated to follow the money through those things.”
Caspi says multiple LLCs also make it difficult for older adults and their family members “if they’re trying to check the track record of a care home, or when care results in harm and they’re trying to get answers to hold the provider accountable.”
In 2018, the New York Times reported that resident care was suffering in for-profit care facilities due to “the complexity of the ownership” and a “constellation of corporations,” among other reasons.
“They have shell companies set up, and that’s one way to keep everything secret. You can’t penetrate those. They hide the money,” says Kingsley.
“And what’s so frustrating about our system in Minnesota is that there really is truly no financial transparency that’s required under the law,” says Okerlund.
Kingsley believes real answers might need to come from “whistleblowers, somebody from the inside who has access to this kind of power. But I’m not seeing whistleblowers in this industry.”
“It’s astonishing what hell some of these poor people have gone through”
There are at least two ways for consumers to look up a Minnesota care facility’s record with the state, to find out whether it’s in compliance with the law, and if it has a proven history of abuse, neglect or exploitation.
The first is MDH’s Minnesota Health Care Provider Complaints webpage where all of its investigative reports are made public when final.
The second is Elder Voice Advocates’ ElderCareIQ site. Simply by typing the word “Highland” into the site’s search engine, The Reporters Inc. discovered several additional substantiated, and one inconclusive, state investigation reports involving the St. Paul care facility:
In October 2021, MDH substantiated an allegation of neglect of a Gracewood/Highland resident described in the report as “obese,” and who had suffered a stroke.
The resident had been left “in bed for over six months without attempting to transfer him out of bed.” That led to the resident developing pressure ulcers that required wound care.
The report also states, “Although he did not receive the services, facility staff signed off that they assisted and completed mechanical lift transfers…”
In June 2022, MDH substantiated a report that staffers at Gracewood/Highland left a resident with Alzheimer’s “crying on the floor.”
She was later found sitting in a chair “holding her leg and wincing in pain.”
The resident was then hospitalized and found to have suffered a hip fracture.
The staffers in question were terminated after the incident and the facility then conducted a “re-education” for employees on the “importance of following policy and procedure after resident falls.”
In October 2022, a staff member at Gracewood/Highland was accused of neglect when a resident with Parkinson’s disease was found unresponsive and thought to have received incorrect medicine.
MDH determined neglect was “inconclusive” because even though “an initial toxicology screen showed the resident was positive for antidepressant medication that he was not prescribed,” a subsequent blood test “was negative for the medication.”
MDH also filed three additional State Rapid Response Investigative Public Reports involving Gracewood/Highland on August 29, 2023 alone, the same day it filed its report involving Sheila Nelson.
In all three, the complaints about the facility were also substantiated.
“That surprised me, that there would be that many reported things in the same time frame,” says Vickie.
In one of the August 2023 reports, MDH substantiates an allegation that a ULP (Unlicensed Personnel) abused a resident with Alzheimer’s when the ULP “slapped” the resident on the back near the upper shoulder.
The abuse was witnessed by a facility staff member and the sound was captured on video surveillance.
Although the ULP is no longer employed by the facility and the facility reported the incident to the state, “it took no corrective action to prevent further occurrence and no re-education or training was provided to facility staff.”
The “vulnerable adult” described in this report is also now deceased.
“I don’t think it’s about re-training,” says Lacy, whose own struggles trying to find enough PCAs to assist her were first detailed by The Reporters Inc. in 2018.
She adds, “There’s no amount of training in the world that’s going to make a difference if someone just doesn’t care that they’re putting someone in a situation like that.”
Michelle Lacy, who has cerebral palsy, has been able to avoid assisted living–so far. “What would happen to me and where I’d end up if I lost my current PCAs is a stress that’s constantly hanging over me,” she says.
In another August 2023 report, MDH substantiates a claim that the facility neglected a “non-verbal” resident with Amyotrophic Lateral Sclerosis (ALS), a nervous system disease that weakens muscles and impacts physical function.
Staff failed to respond to the resident’s call light on multiple occasions, causing “emotional distress and insecurity.”
In one instance, the resident summoned staff help and waited two hours and 20 minutes without a response. Video surveillance showed the resident activating her call light at 5:10 a.m. and then “constantly thrashing around in bed, appearing distressed.” This continued until 6:50 a.m. when “the resident started hollering,” but there was still no staff response.
It wasn’t until around 7:30 a.m., after the resident contacted outside family members—asking them to come to the facility to locate staff—did she get the assistance she needed.
The report states, “A review of facility grievances identified complaints dating back to 2017 regarding the call light system, long call light wait times, and staff silencing call lights without checking on residents.”
The MDH report indicates “no action” has been taken by the facility to address the issues substantiated in this investigation.
“I found that horrifying when I read that,” Vickie says, “because I’ve known people with ALS and they can be very, very physically distressed from their disease and they need help.
“I do know that in the past there have been people on the night shift who have actually brought in a bed roll and would roll it out and take a nap there. They weren’t allowed to do it, but Sheila saw them do it.”
And in the third August 2023 report, MDH substantiates a claim that the facility neglected and maltreated a resident with Parkinson’s Disease when it administered incorrect medications, resulting in a 39-day hospitalization of the resident who “did not return to their prior level of function” and, upon release, was discharged to a different nursing facility due to an increased need of care.
Hospital records indicated the resident was admitted to the ICU for a diagnosis of acute encephalopathy “as a result of a medication error.”
A family member of the resident said the hospitalization was “due to an overdose” and that the resident was comatose for two days and “very lucky to be alive after this error.”
The facility investigated the incident internally and re-educated the ULP involved in the incident (who denied administering incorrect medications to the resident) but the investigation included no review of the facility’s medication administration process “to determine how the system breakdown occurred” and “failed to identify the root cause of the medication error.”
The “vulnerable adult” described in this report is also now deceased.
“I wish we could tell you that we have never seen these kinds of reports before,” says Sundberg, “but we see them come through regularly. It’s astonishing what hell some of these poor people have gone through.”
In connection with each of these August 2023 reports, Gracewood/Highland was fined another $1,000.
“Providers will not learn from fines like that,” says Caspi. “They will not learn anything. It’s like giving parking tickets to UPS.
“It means nothing other than further indignity to older adults and their families. It also represents yet another indication of the very weak state enforcement of basic care standards and assisted living regulations.”
In response to all of the August 2023 reports, Rufino Lorenzo of Gracewood/Highland emailed The Reporters Inc., stating, “We have undertaken a comprehensive review of our medication administration policies and our call light response system. All personnel have received retraining on the issues raised in the reports. Regarding call lights, we are undertaking a complete upgrade of the entire system so that a resident’s request for assistance is properly tracked, and they are provided the timely care and assistance they need and deserve.”
Directly beneath Lorenzo’s Vice President of Marketing and Sales title on his email signature, the names of three LLCs appear: White Pine Holdings, LLC, Gracewood Holdings, LLC and Comforts of Home Holdings, LLC.
Below those names is an address in Mendota Heights, Minnesota that links to a strip mall.
A basic internet search reveals that White Pine, Comforts of Home, and Gracewood are all listed as “Senior Living” facilities on this website: https://www.wpseniorliving.com.
According to that site, there are six “Comforts of Home” assisted living, memory care and “mens memory care” facilities in Wisconsin—in Baldwin, Chippewa Falls, Hudson, Menomonie, River Falls, and St. Croix Falls.
And there are five “White Pine” facilities offering the same care services in Minnesota—in Blaine, Cottage Grove, Fridley, Inver Grove Heights and Mendota Heights.
The site lists two “Gracewood” facilities that offer assisted living and memory care In Minnesota, in Lino Lakes and “St. Paul (Highland Park).” The latter is the facility that Sheila lived in, also known as Highland GW LLC and/or Gracewood Advanced Assisted Living & Memory Care of Highland.
White Pine Holdings, LLC is registered with the Minnesota Secretary of State’s Office as a “Limited Liability Company (Domestic) business “in good standing with a “home jurisdiction” of Minnesota and a registered office address in Deephaven, Minnesota.
A search for Gracewood Holdings, LLC with the MN Secretary of State ends with “no results” while a search for just “Gracewood” links to “Gracewood Senior Living” and lists an address in the same Mendota Heights strip mall as Lorenzo’s email.
However, Gracewood Senior Living is only registered with the Secretary of State as a “trademark-service mark” business type, not an LLC.
A search for Highland GW LLC, the name used by MDH in all of its “State Rapid Response Investigative Public Reports” (though not included on Lorenzo’s email signature), indicates that it’s a “Limited Liability Company (Foreign)” business “in good standing” with a “home jurisdiction” of Delaware. It also has a registered address in the same Mendota Heights strip mall as Lorenzo’s email.
When The Reporters Inc. sent Lorenzo several follow-up questions, he responded, “ At this point, I don’t have any other information for you.”
“What is somebody’s life worth?”
When Vickie Nelson returned to Gracewood/Highland to pack up Sheila’s belongings after her death, “Nobody there even knew that she had died. People said, ‘They don’t tell us anything.’”
Vickie says no one from the facility’s management team offered condolences, except in a letter sent to close out Sheila’s account.
Despite everything her sister endured at the facility, Vickie says she doesn’t hold Gracewood/Highland responsible, or liable, for Sheila dying. She and her family have no plans to pursue legal recourse.
“We don’t see that it would benefit Sheila,” she explains. “And again, I don’t have the energy to pursue something like that.”
It’s up to the family to bring a lawsuit,” explains Peters. “But our laws make it very difficult to sue and people have spent the entire inheritance they received from the deceased family member suing, without success.”
“I just think it’s so fundamentally sad,” says Okerlund. “I mean, if people don’t file lawsuits and get justice then how is our system ever going to get better?”
“We’re talking about the safety issues and the physical injuries here but there’s also deep psychological harm and devastation for the victim’s loved ones,” Caspi says.
Sheila Nelson, in one of her final photos.
In her eulogy at Sheila’s Celebration of Life gathering this past spring, Vickie told the 60 people in attendance, “Sheila led a joyful, purposeful life filled with love. Rheumatoid arthritis may have ravaged her body but never her spirit.”
Today, nearly eight months after her sister’s death, Vickie says, “I miss her a lot, but I’m mostly sad because I know that the last couple years of her life weren’t the quality that we’d hoped it would be. I wish it would have been more comfortable, that she didn’t always have to be worrying about who would be handling her and how.
“People like my sister basically go into these care facilities to live out their lives. But it should be with respect and care. They need to have places where they’re treated with dignity and kindness.”
Sheila’s friend Mary Bergerson says, “I’m still angry with the facility for its lack of care and incompetence. There still has to be some kind of consequences, so that this doesn’t happen to somebody else.
“What is somebody’s life worth and who makes those choices? My friend is dead because no one would listen.”
Mark Saxenmeyer is the Executive Director of The Reporters Inc. You can read more about him here on our Team page. Mark can be reached at
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COMMENTS
One person commented on "Investigating Assisted Living Homes"
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Mary says:
The facility I was in was neglectful and dirty and did not have my medications which led me to psychosis. I got out. No one cares