Doors to a better place: After years of unrest, stability coming to group homes
DULUTH—Huntington's disease is a cruel and fatal condition. Genetic, it follows a person like a specter until presenting in adulthood when it slowly, across the years, erodes the brain and cripples the body. It can be characterized by constant straining and waves of twitching.
For 50-year-old James Adams, who lives with advanced Huntington's, it was a fight to both transfer from wheelchair to recliner and say what it meant for him to be finally living with his wife, Mardell Columbus-Adams.
"Everything," he said during an interview this winter at the couple's home in Hermantown — a Residential Services Inc. group home they share with two other people under the 24-hour care of staff members.
The couple met years ago while living in separate assisted living and group homes. They stayed apart through the first five years of marriage.
"We fell in love doing things together — playing pool, going to the bakery," said Columbus-Adams, 59, who is a person with co-occurring mental illnesses and requires psychotropic medications to keep both the voices in her head and her depression in check.
Living apart after their 2012 marriage, they arranged regular meetings and even overnights with the help of their support teams made up of social workers, group home leadership and others. Still, "I missed him," Columbus-Adams said. "This is better."
That they were able to arrange to live together as of last spring reflects well on their self-advocacy, the quality of their support teams and the way Minnesota and St. Louis County are evolving in their care of people with disabilities and vulnerabilities.
A state-mandated move toward what is called "person-centered care" has prioritized residents' preferences — allowing people to shape their lives rather than be ruled by others claiming advocacy or best interests.
"We don't get sick of each other," Columbus-Adams said, stealing a kiss from her husband during the interview. "We're really good for each other."
A checkered history
It was a 2010 investigative piece by Forum News Service titled "Danger behind these doors?" that first revealed the uneasy landscape occupied by the almost 300 group homes in and around Duluth.
Low-paid and, in some cases, under-trained workers were being assaulted by residents. Conversely, some workers were harming or taking advantage of residents. Local law enforcement agencies and other community resources, such as hospitals, were being called into use by group home staffs at rates which stressed those systems.
Subsequent reporting through the years found that St. Louis County Public Health and Human Services officials wanted to reduce by a third the nearly 1,200 group home beds — usually found four to a residential home — in and around Duluth. They claimed Duluth had unnecessarily become one of the preferred placement spots for people with severe mental illness from across the state.
Recent years at these privately owned, for-profit group homes have seen tension and incidents of tragedy make news for an industry which strives to be inconspicuous and blend into its communities. In 2011, a resident was shot and wounded by police after starting a fire in his home and trying to take a gun off of a responding officer. Another group home resident was killed when he was struck by a vehicle after running from his home along Midway Road. One man, Joseph Leo Zak, went missing from his group home in 2015 and has never been found despite exhaustive search efforts by authorities and others. Disgruntled workers rallied to unionize.
A roundtable discussion in Duluth in 2016 saw the issues surrounding the state-governed system formally known as corporate adult foster care described as "a crisis" by the state's then-executive medical director for behavioral health, Dr. Steven Pratt. It was made clear at the meeting, which filled the conference room at the Public Safety Building off Arlington Avenue in Duluth, that group homes — which the state turned to when it began closing its large, old-style mental hospitals in the late 1970s — were themselves nearing a breaking point.
But even then, help was on the way.
In 2015, a federal judge approved the state's long-in-progress Olmstead Plan, which outlined further integration of people with disabilities. The plan, updated again last year, reduces the conformity which leads to power struggles inherent in supervised group homes and gives people control over their lives in a person-centered culture.
Mardell and James living together is an example of that. For years they'd been told they were in the best places for each of them. They knew better.
"I know there will come a day when he's not going to be here anymore," she said. "But I feel lucky to be able to be with my husband now. It's been a godsend."
The paradigm shift away from 30-plus years of group home standards has been hard to embrace for county officials, social workers and group home operators, said Gena Bossert, adult services division director for St. Louis County. But they're finding that ceding control to individuals is working.
"Things are really changing for people," she said. "Instead of having an array of services and you come in and have to fit, it's more about you as the individual."
The state has maintained a moratorium on group home expansion for the past decade — in part to gain control of what had been rampant growth and in part to explore and press for alternatives which would allow people with disabilities more independence.
At the same time, St. Louis County has not followed through with contraction either, Bossert said. Not one of the 400 beds the county once hoped to lose is gone and there are no restrictions on movement into St. Louis County for people coming from around the state.
"There has not been a huge decrease of beds or anything of that magnitude," she said, "and I'm not sure there will be."
'We're all listening'
In place of contraction, sources say a newfound stability in the group home landscape locally is also owed to better communication between operators and agencies such as law enforcement.
"It's a collaboration that's looking to solve it as opposed to everybody kind of pointing the finger," said Jon Nelson, executive director at RSI of Northeastern Minnesota, which operates the home where James and Mardell live. "We're all listening to each other about what part we can play."
Sources credit a pair of law enforcement officers for helping to change the climate. Duluth Police Department Investigator Nick Lepak and Sgt. Wade Rasch of the St. Louis County Sheriff's Office met for months with group home operators to develop what they call a Person-Centered Incident Matrix — a tool that outlines what is or isn't an emergency, when to call 911 and more.
Before then, Lepak said, "the definition of emergency was unclear across the board." Lepak likes to use the example of a ham sandwich. Heretofore, group home staff might argue with a resident who wanted a sandwich apart from normal meal times. The result could be a power struggle which, if escalated, might yield a call to law enforcement, he said.
"Just give them the sandwich," is Lepak's retort.
In November, the officers met with a broader contingent of group home representatives in downtown Duluth for the first training session on the new incident matrix.
"It was extremely well-received," Lepak said. "That line of communication hadn't been opened in a while. We were able to explain where we were coming from and give them a tool for front-line staff."
Rasch agreed, saying, "From where we were two years ago, just bringing everyone to the table to discuss things has been a big help."
The hope is to reduce what Lepak calculated were 545 law enforcement calls to group homes in the year between November 2016 and November 2017.
Additionally, said Rasch, more than 40 law enforcement officers between the police and sheriff's office have received 32-hour crisis intervention training — a program designed to teach people how to address a person with a disability or mental illness who is acting out. It is a decidedly different approach than confronting a violent criminal.
"It's among the best trainings I've had in my career as a cop," Rasch said.
It's these sorts of efforts and understandings that are calming what had been a volatile group home landscape.
"In the beginning there was fear and apprehension because some of us feared we might be singled out as problem homes," Nelson said.
But by opening lines of communication, working together and listening to residents' preferences, Lepak said things are better than at any point in recent memory.
"We're not trying to be punitive toward homes," Lepak said. "We're all trying to do good things."
Added Nelson, "It's a much better climate."