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

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

The 29-year-old has 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 tube feed him, give him dozens of medications and monitor his frequent and intense seizures.

However, over the past few months, that intense level of care has largely been provided by Nick’s parents at their home in Wisconsin, not by the health care personnel at the group home.

“There just aren’t staff available to do it,” said Joan Skluzacek, Nick’s mother.

A severe worker shortage in the care professions in Minnesota has upended critical care for people with disabilities. Provider organizations, unable to financially incentivize workers to the field, are struggling to fully staff group homes across the state.

Several months ago, the crisis hit a breaking point when dozens of group homes across the state closed, leaving people with disabilities scrambling to find alternative care and a new place to live.

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

“We’re at a crisis,” said Paul Skluzacek, Nick’s dad. “It’s not just us. We know that it’s across the board.”

Complex care

The Skluzacek’s believed they did everything right to ensure their son would be cared for, but it still wasn’t enough.

Two decades ago, the couple drew up blueprints for a single-story house with an open floor plan and custom features, designed specifically for Nick and other people with disabilities.

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

“We like to say mom and dad grew up and moved out,” Joan said laughing.

But when the pandemic hit in early 2020, the couple said they began to notice changes.

Less staff were available to cover shifts, and many of those staff were working doubles. Paul said he even remembers the provider’s upper management team covering various caregiving shifts at the home.

Nick’s care is complex, the family says. He receives nearly 40 different medications throughout the course of the day. He has a dozen different protocols to follow depending on what kind of seizure activity he’s having. One mistake could result in a life-threatening illness or long-term hospital stay.

“It’s a major reason why consistency in his care is so important, and transitions are risky,” Joan said.

The family was forced into transition this winter when the group home’s long-time provider told the Skluzacek’s that it could no longer keep enough people employed to operate the home.

“We were not sure what the future was for any of the residents of the house,” Joan said.

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

“What the pandemic did was shine a light, a big spotlight on what was already a crisis,” Joan said.

On the brink

For years, advocates and providers have warned of a workforce collapse, arguing that the low reimbursement rates from the state are not competitive enough.

“As a provider, in terms of a budget, I’m capped,” said Michelle Priggen, CEO of Cardinal of Minnesota, one of the largest residential providers in the southern part of the state. “I can’t pay my staff more than $15 or $14.53 because I’m not getting reimbursed for it.”

Those reimbursement rates, Priggen argues, are set years in advance by the state legislature. The tight labor market, coupled with soaring inflation, makes it nearly impossible to recruit workers to the care profession.

In December, Priggen made the decision to close 11 of the company’s 55 residential group homes that are scattered throughout 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 ruin people’s year.”

Around that time, Senators Jim Abeler (R-Anoka) and John Hoffman (DFL-Champlin) started hearing from people like Priggen and families like the Skluzacek’s.

“It just hit in me, like ‘oh, no,’” Hoffman said. “Has our system faltered that much?”

The pair made the workforce crisis their signature issue in this legislative session. They held multiple Senate hearings and demanded action from the state’s department of human services commissioner, Jodi Harpstead.

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

“I’ve been convinced that people have found other services,” Commissioner Harpstead said in an interview with 5 INVESTIGATES last week. “So, so far, things are fairly stable.”

The commissioner pointed to a spike in closings in January that has leveled out in the following months, according to the state’s data. Harpstead said a “handful” of closures are common every month but that more group homes opened between January and March than closed.

“We’ve seen the data stabilize to fairly normal levels right now,” she said. “I would just keep saying ‘for now,’ because we don’t know if that’s going to spike again, given the workforce shortage.”

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

“The safety net has eroded,” Sen. Abeler said during an interview earlier this month. “The problems were brewing, and they were approaching a crisis, and then COVID hit. And it exacerbated every weakness in the system for group homes and nursing homes.”

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

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

What comes next

Most weekends nowadays, the Skluzacek’s are forced to bring Nick to their home in Prescott, Wisc., where they serve as his primary caregivers.

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

“We are mostly needed to cover evening and overnight shifts,” Joan said, adding someone always has to be awake with Nick in the night because that’s when his seizures are the worst. “That’s where the most gaps in coverage are.”

At this rate, Joan said she’s unsure if Nick’s group home will be able to stay open through the end of the month.

The couple says they worry about what the future looks like for Nick, his housemates, and anyone else who ends up in this system.

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