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| David Joles - Star Tribune |
Residents
at the Jones-Harrison Senior Living complex participated in Chaplain
Chat, a three-times-a month gathering with Chaplain Monica Powers where
Powers leads group members on discussions about religious as well as
other topics. Here, Jones-Harrison Senior Living complex residents
Colleen Jackson, right to left, and Anne Klein, were eager to get
started in July.
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."