Tracy Lussier and Shelly Gelhar had a modest wish list when they moved their 68-year-old mother, who suffered from a degenerative brain disease, into an assisted-living home in Apple Valley. They expected staff to keep her clean, comfortable and safe, so loved ones could focus on her emotional well-being.

Yet within weeks, the sisters noticed alarming signs of neglect. On regular visits, they found their mother was left unbathed and lying in soiled sheets for days at a time. When she fell from her bedroom chair, the sisters had to plead with facility staff to call for medical help. The next day, X-rays showed she had fractured her hip — an injury that would leave her bedridden and in agony for the last few months of her life.

"From day one, it was apparent they didn't care about our mother," said Gelhar, of Rosemount. "She was just another body to fill a bed."

Their experience highlights the extreme lack of oversight of Minnesota's assisted-living industry, a shortfall that has potentially endangered thousands of seniors who entrusted their care with these supportive housing communities.

But now, years of grassroots lobbying by victims of abuse and neglect in these facilities have resulted in the broadest expansion of state supervision of long-term care in generations. A sweeping new state law goes into effect Sunday that establishes minimum levels of care and basic consumer protections for the fast-growing assisted-living industry, which is home to nearly 55,000 Minnesotans.

For the first time, facilities will be licensed and subject to more regular inspections, and residents will have statutory protections against arbitrary evictions and retaliation for reporting maltreatment.

"People's lives will be saved by this law — and hopefully the conditions of those lives will be improved," said Kristine Sundberg, executive director of Elder Voice Family Advocates, a coalition of relatives of elder abuse victims that pushed for changes.

Those families say the dozens of new regulations are long overdue and needed to keep up with the evolving nature of senior care.

When assisted living first gained popularity in the 1980s, the facilities were thought to need less regulation because their residents typically were younger and required less care than people in federally regulated nursing homes. Over the years, however, the distinctions have blurred.

Assisted-living communities have mushroomed in size and have begun catering to older residents and those with more acute health needs. Many have opened specialized "memory care" units for people with dementia and buildings that resemble skilled nursing homes. Nationally, nearly 60% of people living in these homes are older than 85 and about 40% suffer from dementia.

But until now, Minnesota stood alone as the only state that did not license assisted-living facilities, which meant it was hamstrung in enforcing basic standards of care.

Major change for Minnesota

The new law marks a significant shift by expressly recognizing the vulnerability and complex medical needs of assisted-living's changing population.

For the first time, facilities will be required to evaluate the physical and cognitive needs of every newly admitted resident and provide access to a registered nurse 24 hours a day, seven days a week. On-site inspections will be every two years, compared with the previous three-year cycle. And training requirements have been strengthened for staff who care for people with dementia.

The law also effectively bans the practice of sudden and arbitrary evictions in assisted living.

For decades, these homes faced almost no repercussions for forcing out residents who became difficult to manage. Now, if a provider wants to terminate a resident's contract, they must first ensure the resident has a safe place to go and provide them with at least 30 days' written notice before they are discharged — similar to protections that already exist for nursing home residents.

"This should have happened years ago," said Eilon Caspi, a gerontologist and health researcher who is on the board of Elder Voice.

Were it not for a relentless effort to call attention to unsafe conditions in these homes, the new consumer safeguards might never have arisen.

Starting in 2016, the daughters, sons, spouses and other relatives of maltreatment victims began coming forward with harrowing stories of their loved ones suffering from preventable deaths and abuse in assisted-living homes.

The family members, organized as Elder Voice Family Advocates, inundated lawmakers with stories of loss and anguish, including incidents in which loved ones had died, been maimed or traumatized as a result of maltreatment.

In emotional testimony and research reports, they described incidents in which elders were left for hours on the floor after falling, or suffered painful deaths because facilities failed to treat routine health problems, such as hernias, dehydration and diarrhea. Others died because wellness checks were not completed as prescribed and medications were not given or were given incorrectly, they found.

These were far from rare incidents.

A 2017 Star Tribune investigation found the state was receiving more than 20,000 allegations a year of neglect, physical abuse, unexplained serious injuries, and thefts in homes for seniors and people with disabilities. Only a fraction of those complaints — approximately 3% — were investigated on-site by the state.

What's more, some family members who spoke out about the maltreatment, or who attempted to install cameras in their loved ones' rooms to monitor care, were harassed or threatened with eviction, the investigation found.

Uncovering abuse

Sisters Jean Peters and Kay Bromelkamp were among the first to call for changes after uncovering verbal abuse and neglect of their 85-year-old mother on video at an Edina assisted-living home.

Using a tiny camera, they caught aides repeatedly chastising their mother as well as sleeping in chairs without providing daily care, regular safety checks or taking their mother to meals. After their mother died, the sisters helped dozens of families install cameras in senior homes — a right that in 2019 became enshrined in state law.

"We got this done for the sake of humanity," said Peters, a registered nurse and president of Elder Voice. "For decades, the industry and the regulators had let things slide, and they needed to be woken up."

Some wondered if licensing would ever become a reality.

In 2018, a broad-based effort to reform Minnesota's system for protecting seniors foundered amid partisan divisions and opposition from the senior care industry.

Then last spring, the Minnesota Department of Health, the state agency that oversees long-term care, became swept up in efforts to combat the worsening coronavirus pandemic. As a result, agency officials pushed back licensing a year later than planned, asserting that senior homes needed to stay focused on preventing the spread of the fast-moving virus, which had already killed hundreds of Minnesotans in long-term care facilities.

The delay frustrated elder care advocates who pointed to the staggering death toll in senior homes as further evidence of why more regulatory oversight was needed.

Yet, despite a winter surge in COVID-19 cases, the Department of Health forged ahead and this spring completed the monumental task of drawing up the new rules with public input and educating providers on the new licensing system.

The response was stronger than many expected. By June, the agency had received more than 2,000 license applications from assisted-living and dementia care providers across the state. To enforce the new regulations, the agency expects it will need another 56 staff.

"I am really proud of the work we have done to stand this up at a time that we also had a COVID-19 pandemic," said Lindsey Krueger, director of the Department of Health's Office of Health Facility Complaints.

Connie Billmeier of Minnetonka is among those who wishes the new law had been enacted years earlier.

In fall 2018, her 58-year-old brother with cognitive disabilities was found slouched in his wheelchair with unusually high blood pressure at an assisted-living home in northern Minnesota. Instead of calling for medical help, unlicensed staff gave him aspirin and put him back to bed. Later, he was airlifted to a hospital where doctors discovered internal brain bleeding that likely caused his death, she said.

"Perhaps if a [registered nurse] had been on duty, he or she would have recognized that my brother was failing sooner," she said. "It makes you wonder how many lives were lost because we didn't have these protections sooner."

Chris Serres • 612-673-4308

Twitter: @chrisserres