People in assisted living are getting sicker. Wisconsin isn't ready to keep them safe.

When Melissa Hakes' father was admitted to Oak Park Place of Oak Creek in fall 2021, he was himself: a loving 82-year-old man who liked fishing and the Packers. Despite his dementia, Roger Marvell walked, shaved and brushed his teeth, his daughter said.

Within weeks, Hakes described her father as "drooling with uncontrollable tremors."

He died one month after admission, having developed a urinary tract infection, sepsis and brain dysfunction, medical records show.

“It's too late for my father,” Hakes later wrote in a complaint she filed with the state. “Maybe if the state gets involved, you'll be able to save someone else's loved one.”

Over the past two decades, Wisconsin assisted living facilities have admitted people with increasingly complex health issues. More and more residents rely on staff to eat, drink, get out of bed, administer morphine, prevent pressure sores, handle advanced dementia and more.

But assisted living facilities weren’t initially designed for that kind of care — and state oversight of admissions, staffing levels and training hasn’t kept up, a Milwaukee Journal Sentinel investigation found.

Many Wisconsin facilities are now struggling to keep residents safe, based on a review of five years of data on public complaints and interviews with more than 50 workers, families, nurses, researchers and others.

Barbara Bowers, a long-term care researcher and professor emerita at the University of Wisconsin-Madison School of Nursing, said she is "astounded" by the medical complexity of the people in assisted living today.

"They look a lot like, 10 years ago, the people in nursing homes," she said.

State inspection reports offer a glimpse of how assisted living facilities have struggled.

In Amery , on the western edge of Wisconsin, a memory care unit with 48 residents recorded 60 falls in 74 days.

In West Allis , a resident with diabetes and other health issues had a foot amputated after the facility failed to monitor it for several weeks.

Outside Appleton, a resident was enrolled in end-of-life care after developing 12 pressure sores in 44 days, one so deep that hospital staff said it had likely reached bone.

In Hakes' case, a state inspector who followed up uncovered several general issues, including severe understaffing and a resident who described going without a shower for two months. The state issued no findings specifically related to Marvell's death.

A spokesperson for Oak Park Place declined to discuss the case, citing resident privacy, but said since 2022, the company has made significant efforts to recruit staff amid industrywide shortages.

The majority of assisted living facilities never receive complaints, according to state data.

Industry representatives argue the state focuses too much on penalties rather than support, especially since facilities report caregiver vacancy rates of 28% or higher .

"If these facilities are forced to reduce access, or worse yet, get regulated out of existence, where will these residents go?” asked Rick Abrams, CEO of the Wisconsin Center for Assisted Living, a trade group representing long-term care providers in the state.

The trends are concerning. Since 2003, the number of assisted living beds in Wisconsin has doubled to more than 60,000. In that time, complaints have tripled.

Experts are clear: Facilities aren’t prepared. Workers are leaving as a result. And solutions are possible, but they won’t be easy.

“It is very easy to single out individuals, or individual facilities, as being bad," said Dr. Alexis Eastman, a UW-Health doctor and professor specializing in the care of older adults. "It is much harder to look at an entire system."

Assisted living is becoming more medical, despite initial design

Rebecca Schmidling said she will never forget finding her mom Linda Tellier on the floor, alone and covered in bruises.

Schmidling said her mom, who had Parkinson's and dementia, fell several times at her assisted living facility in Greendale. The facility appeared so understaffed — and employees had been given such little training in Parkinson's — that Schmidling said she worried constantly, especially as her mom's health declined during COVID-19.

Eventually, the worst happened: Tellier fell and broke her hip in November 2022, then spent six months bed-bound before dying at age 75.

A state investigation concluded Clifden Court North had failed to keep her mom's care plans updated, a basic precaution meant to alert staff about fall prevention. The facility declined to comment.

“There’s definitely so many things that happened that should never happen to a human being,” Schmidling said.

Like thousands of other Wisconsinites, Schmidling’s mom needed round-the-clock supervision and was reassured she would get it.

But when it comes to assisted living, many families don't always get what they expect.

That's partially because "assisted living" is a broad term. In Wisconsin, it encompasses everything from small group homes for adults with disabilities to sprawling memory care facilities for people with dementia.

Some look like nursing homes — and others don’t come close.

There's a big difference: Nursing homes are meant for people who need 24/7 access to a nurse. Assisted living is for people who need no more than three to seven hours per week of nursing care, and whose health is generally stable.

"The original intent was to be more of a social model. It wasn’t really meant to be a heavy health care-type model in line with a skilled nursing facility," said Mike Pochowski, CEO of the Wisconsin Assisted Living Association, another trade group. "They’re not staffed that way."

But since assisted living facilities started gaining popularity in the early 2000s , the residents who moved in have become increasingly frail.

One national study found a 14 percentage point increase from 2007 to 2018 in assisted living residents with at least six chronic illnesses, rising from 47% to 61%. Another study, from 2022 , found that assisted living residents have an average of 14 chronic health conditions, nearing the 16 among residents of nursing homes.

"We can keep people alive with their complex, chronic medical conditions, in ways that we could not do 40 years ago,” said Eastman, the UW doctor. “And so many older people have much higher chronic needs than we even dreamed possible decades ago."

But for someone who needs care in a facility, finding one isn't always easy.

Wisconsin's most common type of assisted living facility costs between $4,600 and $6,900 per month. Medicare insurance doesn't cover it.

Medicaid, for people with low incomes, does — but many facilities choose not to accept the public funds. Those that do say it pays too little.

Eastman said many people fall in a "gray zone": needing more care than assisted living can offer, but not enough for a nursing home.

“We’ve got lots of people who are very frail, who don’t meet criteria for a skilled nursing facility, but who need to be cared for somewhere, who are then being placed into facilities who would love to care for them but frankly are not given the resources to do so,” she said.

Residents can experience harm when basic procedures fail

When facilities fail to meet basic regulations, they can put residents at serious risk.

Many problems start right at admission.

Last January, state inspectors toured a facility in Fitchburg, near Madison. They found a resident who had spent 44 days confined to a twin-sized bed because the facility admitted the person without having the correct mechanical lift to help them out of bed.

In nearby Fort Atkinson, a facility licensed only to care for older adults with dementia admitted someone with several mental health conditions, including PTSD, bipolar disorder, borderline personality disorder, paranoia and suicidal ideation.

Inspection reports show staff reported feeling unsafe and unable to help the resident manage their behavior; the resident reported neglect. Police were called to the facility 10 times in 11 weeks in response, records show.

To admit someone new, assisted living facility managers are required to gather the person's health information and decide whether staff are equipped to care for them. But there is no standardized admissions tool, nor is the person overseeing admissions required to have a medical background.

More than ever, assisted living facilities find themselves operating like medical offices, with staff in charge of coordinating care for residents with scores of outside nurses, doctors, pharmacies, Medicaid-funded organizations and others.

But unlike nursing homes, Wisconsin does not require assisted living facilities to have a nurse on staff at all. As of a 2016 study, Wisconsin was among 13 states that lacked such a requirement.

In addition, the state does not specify or track how employers meet training standards for entry-level caregivers. There is no requirement they become certified nurse aides (CNAs), the standard for nursing homes.

Caregivers, nurses and researchers told the Journal Sentinel that training requirements don't ensure staff are prepared for the job. As a result, new staff quit — driving burnout for veteran caregivers.

Residents, who may have complex medical conditions like dementia and diabetes, are then put at risk.

In Greendale, inspection records show a resident was hospitalized with high blood sugar five times in eight months after being given incorrect doses of insulin. Several people blamed turnover, lack of management and lack of training for staff giving the insulin.

"(The resident's) blood sugars were like a roller-coaster of really not having the right protocols in place," a high-level manager told the state.

In Neenah, records show a resident with diabetes and chronic kidney disease was not being given diabetic-safe meals. The administrator was unconcerned, they told the state, despite three hospitalizations of the resident in three months for blood sugar issues.

"I've told them multiple times (they've) got to have a diabetic diet," the resident's legal decision-maker told the state. "They'll end up on dialysis."

Dr. Dawn Davis, a doctor at UW-Health who specializes in diabetes, said assisted living facilities often have a policy instructing staff to call a doctor or nurse when blood sugar levels hit unsafe ranges.

But when a doctor or nurse isn't available, staff don't always know what to do.

“There's very few patients with diabetes where we can say, ‘Take this exact amount (of insulin) at this exact time every day,'" Davis said. "So there has to be a little bit of knowledge and ability to be flexible, and to adjust things based on the real-time situations.”

Meanwhile, state regulations do not set a minimum number of staff required to care for residents. Caregivers, the employees who spend the most time with residents, say they simply lack time to do their job.

In the Amery facility with 60 falls in 74 days, the administrator told the state two to three caregivers per shift was adequate because activities and kitchen staff could help as needed. But caregivers told an inspector that the facility was severely understaffed, causing at least one employee to quit in protest.

As a traveling nurse, Tina Kollath goes to different assisted living facilities to help staff with more advanced tasks that they aren’t trained to do, like changing catheters, managing wounds and cleaning waste drainage bags. But she's found that things often slip through the cracks once she leaves.

After 11 years on the job, Kollath believes families are often misled into thinking that assisted living facilities are more capable than they really are.

“They think that their families are in good hands, that they're paying all this money and they shouldn't have to worry, when it's really just a big old lie,” she said.

'Nobody does anything'

In spring 2022, Oak Park Place of Menasha was experiencing several issues at once: a turnover in leadership, understaffing, and a large number of residents with time-consuming medical needs.

According to a state inspection report, when "Resident 17" was admitted in March 2022, they had fragile skin, incontinence and dementia. They also needed help to get out of bed, walk and use the bathroom.

On Day 11, the resident pointed out a pressure sore to staff, state records show. On Day 16, a trip to the emergency room uncovered a urinary tract infection, malnourishment and dehydration.

By Day 44, the resident had developed 12 pressure sores, some of them so deep that they had likely reached muscle and bone.

“There’s not enough staff and we’ve reported resident neglect (to management) and nobody does anything,” one caregiver said.

After an unsuccessful attempt to remove the dead and infected tissue, the family chose to enroll the resident in end-of-life care.

“I can’t imagine the pain (they) felt,” a family member told a state inspector. “I don’t know if there was ever actually anyone in charge.”

The state Department of Health Services concluded that Resident 17 had not received the appropriate care. A state report from May listed 39 residents in the building, and said sometimes only two people had worked the overnight shift in March and April 2022.

The Department of Health Services had been receiving complaints about neglect at Oak Park Place of Menasha for a year before Resident 17 moved in, records show. The allegations were later found credible.

“They are not only neglecting and abusing residents. They are also abusing the co-workers as well. They are running a dementia unit with over 26 residents with one caretaker that has to pass meds,” reads a complaint filed anonymously in July 2021.

In a statement, Oak Park Place said it has taken several steps to solve staffing issues at its numerous facilities, which span Wisconsin, Minnesota and Iowa. That includes increasing wages and offering sign-on bonuses, nursing scholarships and tuition reimbursement to staff.

“Oak Park Place works every day to elevate the skills and services of our existing workforce while maintaining active recruiting efforts to attract new staff," the company's statement reads .

Health department is too short-staffed to inspect facilities regularly

From 2016 to 2023, state data shows an average of 78% of facilities never received any complaints.

Since most assisted living facilities seem to be functioning well, industry representatives say additional state requirements are not the answer.

Abrams, of the Wisconsin Center for Assisted Living trade group, said current regulations are overly focused on punishing facilities rather than helping them improve.

“Are these providers perfect and are there unfortunate resident outcomes?” said Abrams. “Of course, but nobody on this good earth is perfect.”

Still, state data shows there are hundreds of assisted living facilities in Wisconsin, home to thousands of residents, that receive complaints every year. More than 400 of them received five or more complaints in the last five years.

In response to the resident with 12 pressure sores, the state Department of Health Services issued a $5,825 fine. It also temporarily barred Oak Park Place of Menasha from admitting new residents and required the facility to work with a nurse consultant to improve practices.

The fine was on the low end of what the facility charges for monthly rent: between $5,200 and $7,600 per resident.

In a statement, the Department of Health Services said it is struggling to keep up with a growing number of complaints in assisted living facilities. The agency has just 49 inspectors to oversee 4,000 buildings and 60,000 residents.

Ideally, inspectors are supposed to visit each assisted living facility every two years. In reality, data shows they spend the vast majority of their time — 90% last year — responding to complaints.

Gov. Tony Evers' 2023-25 budget proposal included a request for 32 additional surveyors, but the measure did not move forward.

Statewide data shows that by 2040, nearly one in four Wisconsinites will be 65 or older. With more people moving into assisted living, complaints "continue to be on the rise and will only increase,” according to Department of Health Services spokesperson Elizabeth Goodsitt.

"Right now, this growth is happening at a trajectory that is outpacing current staff resources,” Goodsitt said in a statement.

Since before the pandemic, state has spent millions to help

State leaders have spent years working on solutions.

At the top of the list: increasing wages for caregivers, which average $15.40 an hour , similar to many fast food and retail jobs.

To that end, the state has raised Medicaid reimbursements using pandemic relief funds and set aside more than $700 million in a fund for direct care workers since 2017. The state health department is also planning to further reform the Medicaid system, intending to raise staff wages and payments to facilities.

It's also created a voluntary training program for entry-level caregivers and funded training courses for managers of assisted living facilities and others .

But reforms have not specifically focused on tightening regulations — a process that can take more than a year and requires Legislative approval.

The Department of Health Services last substantially updated regulations for its most common type of assisted living facility in 2009. The agency revised employee training standards and, for the first time, required assisted living facilities to create detailed care plans for each resident.

A state planning document from that time warned that assisted living facilities were seeing more residents with serious medical conditions “who, in the past, would have lived in a nursing home.”

Catherine Liebau, a nurse with 40 years of experience in long-term care, said she remembers the days when the long-term care industry was “a free for all.” She was grateful when the state stepped in to create additional standards.

With aging Wisconsinites depending on the system now more than ever, she wants facilities and the state to see themselves as allies, not enemies — remembering the goal is to take care of people.

"Look at it like we’re partners here, (to) provide seniors with good care,” Liebau said. “I mean, who the hell doesn’t want that, right?”

Cleo Krejci covers higher education, vocational training and retraining as a Report For America corps member based at the Milwaukee Journal Sentinel. Contact her at CKrejci@gannett.com . Follow her on X at @_CleoKrejci .

This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and The Commonwealth Fund. The organizations played no role in the reporting, editing or presentation of this project.

This article originally appeared on Milwaukee Journal Sentinel: People in assisted living are getting sicker. Wisconsin isn't ready to keep them safe.