As Minnesota group homes struggle to find workers, families are forced to provide complex care for loved ones with disabilities

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For the past six months, Nick Skluzacek’s regimented life has been anything but routine.

The 29-year-old suffers from Dravet Syndrome, a rare genetic disorder that causes a severe form of epilepsy. He lives in a group home in Afton, where caregivers and nurses work around the clock to feed him, administer dozens of medications and monitor his frequent and intense seizures.

For the past few months, however, much of that intensive care has been provided by Nick’s parents at their home in Wisconsin, not by the health workers at the group home.

“There’s just no staff for it,” said Joan Skluzacek, Nick’s mother.

A severe labor shortage in Minnesota’s nursing professions has turned critical care for people with disabilities upside down. Provider organizations that are unable to financially motivate workers to go to the field struggle to fully staff group homes across the state.

The crisis reached a tipping point a few months ago, when dozens of group homes across the state closed and people with disabilities sought alternative care and a new place to live.

While state officials say their data shows closures have returned to more normal levels, 5 INVESTIGATIONS found that even facilities that have managed to stay open continue to face severe staffing shortages, leaving families like the Skluzacek’s have to fill in the gaps.

“We’re in a crisis,” said Paul Skluzacek, Nick’s father. “Not just us. We know it’s across the board.”

complex care

The Skluzacek believed they did everything right to ensure their son would be taken care of, but it still wasn’t enough.

Two decades ago, the couple drew up plans for an open floor plan, one-story home with individual features designed specifically for Nick and other people with disabilities.

Tucked away in a wooded area on a hilltop in Afton, the group home opened on Perrot Avenue in 2016.

“We like to say Mom and Dad have grown up and moved out,” Joan said, laughing.

But when the pandemic hit in early 2020, the couple said they started noticing changes.

There were fewer staff available for shifts, and many of those workers worked double-duty. Paul said he even remembers the provider’s senior management team covering different layers of care at the home.

Nick’s care is complex, the family says. During the day he receives almost 40 different medications. He has to follow a dozen different protocols depending on what type of seizure activity he has. A mistake can result in a life-threatening illness or long-term hospitalization.

“It’s one of the main reasons consistency in his care is so important and why transitions are risky,” Joan said.

Joan Skluzacek has provided extensive care for her son at his residential group for people with disabilities due to staff shortages.

The family was forced to make a change that winter when the longtime caretaker of the group home told the Skluzacek’s he could no longer employ enough people to run the home.

“We weren’t sure what the future would hold for any of the residents of the house,” Joan said.

The staffing crisis is so widespread, the family says, that even the new provider that took over in March is struggling to recruit workers. The result is gaps in Nick’s caregiving, which Paul and Joan are responsible for.

“The pandemic has shed light on what was already a crisis,” Joan said.

On the edge

For years, advocates and providers have warned about downsizing, arguing that the state’s low reimbursement rates are not competitive enough.

“As a provider, I’m limited on budget,” said Michelle Priggen, CEO of Cardinal of Minnesota, one of the largest housing providers in the southern part of the state. “I can’t pay my employees more than $15 or $14.53 because I can’t get a refund for it.”

These reimbursement rates, Priggen argues, are set years in advance by state legislatures. The tight labor market, coupled with rising inflation, makes it almost impossible to recruit workers for the nursing profession.

In December, Priggen made the decision to close 11 of the company’s 55 group homes, which are scattered across the rural parts of Olmsted and Winona counties.

“It was awful,” Priggen said through tears. “We wanted to wait until after the holidays because we didn’t want to spoil people’s year.”

It was around this time that Senators Jim Abeler (R-Anoka) and John Hoffman (DFL-Champlin) heard from people like Priggen and families like the Skluzacek.

“It just hit me, like, ‘Oh, no,'” Hoffman said. “Is our system so stuck?”

The couple have made the workers’ crisis their central theme during this legislature. They held several Senate hearings demanding action from Jodi Harpstead, the state Department of Human Services commissioner.

The Minnesota Department of Human Services (DHS) says while county caseworkers are responsible for finding new service providers for people with disabilities, the state agency has begun tracking group home closures.

“I’m confident people have found other services,” Commissioner Harpstead said in an interview with 5 INVESTIGATES last week. “So far things are pretty stable.”

The commissioner pointed to a spike in closures in January, which the state said has leveled off in subsequent months. Harpstead said a “handful” of closures each month was common, but that more group homes opened than closed between January and March.

“We’ve seen the data stabilize at fairly normal levels for the moment,” she said. “I would always say ‘for now’ because we don’t know if that will increase again given the labor shortage.”

But families, providers and lawmakers say the current situation is not stable.

“The safety net has eroded,” Sen. Abeler said in an interview earlier this month. “The troubles were brewing and they were nearing a crisis and then COVID hit. And it compounded any weakness in the group and nursing home system.”

To help, Sen. Abeler drafted a bill that would allocate $1 billion of the state surplus to pay rate increases for direct care support professionals. The proposal means some workers could see an increase of up to $5 on top of what they currently earn.

The massive funding proposal made it into the Senate Health and Human Services omnibus bill, which passed with overwhelming bipartisan support. The bill is currently being debated in the conference committee.

What’s next

These days, the Skluzaceks are forced to take Nick to their home in Prescott, Wisc most weekends. to bring where they serve as his main caretakers.

Dinner is being prepared on one counter in the couple’s kitchen, while plastic boxes of medication are on another. Every night, Joan crushes pills and mixes the powders in syringes, which are then given to Nick through a feeding tube.

“We’re mainly needed for evening and night shifts,” Joan said, adding that Nick always has to have someone awake at night because that’s when his seizures are at their worst. “That’s where most of the supply gaps are.”

At this rate, Joan said she wasn’t sure Nick’s group home could stay open through the end of the month.

The couple say they are worried about what the future holds for Nick, his housemates and anyone else who ends up in this system.

“Your son or daughter could be in a car accident tomorrow that will result in you needing care at that level,” Joan said. “And you might find that it’s a personal emergency for you, not just something happening to someone else out there.”

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