Last in line: Minnesota disability services on life support with no safety net from the state

Every day for nearly three months, Bob Clapper walked laps around his small, neighborhood park instead of going to work.

The 33-year-old has Down syndrome and relies on a routine that includes his employment at Kowalski’s in Woodbury. Clapper spends a few hours every day at the grocery store wiping down carts and cleaning tables.

He got the job through one of Minnesota’s adult day service providers – a vast network of essential programs that support thousands of people with disabilities in the state.

But those programs were forced to shut down earlier this year as COVID-19 cases spread through the state, sending people like Clapper into isolation.

"The majority of people like Bob are sitting there being stir crazy," said Jim Clapper, Bob’s father. "I think from a mental standpoint, it’s just not good."

Bob returned to work last month after Minnesota’s Department of Human Services loosened restrictions. But the majority of people with disabilities still cannot participate in their adult day services and employment programs.

DHS determined congregate living settings, such as group homes for people with disabilities, pose too great of a risk for transmitting COVID-19 into the community. Providers report a majority of their participants are in this category.

Without knowing when service providers will be able to open at full capacity, Jim Clapper is worried many programs won’t come back after the pandemic passes.

"We’re going to have few programs, fewer capacity, fewer openings and opportunities," Clapper said. "I think there’s going to be a lot of people that will be able to go back to a program at some point and the program won’t be there for them."

That’s because those providers draw the majority of their income from state and federal reimbursement dollars based on how many clients they serve.

When DHS restricted access to those essential services in an effort to slow the spread of coronavirus, the state’s largest agency failed to secure emergency funding for programs like Floodwood Services and Training in northern Minnesota.

The adult day program and employment provider serves almost 60 people with intellectual and cognitive disabilities in the rural community. The once chaotic center, which used to host Bingo games, craft sessions and a client-run thrift store, has been mostly empty since March.

"This is so strange," said Dawn Lamping, the center’s executive director, looking at the large, wood-paneled room where clients would normally start their day. "This room is never this quiet."

At a Senate committee hearing last week, Lamping and a dozen other providers told lawmakers they are hemorrhaging reserves and are operating at six-figure losses. Several said if help does not come soon, they will be out of business by the end of the year.

"We just always adjusted and adapted to do what we had," Lamping said during an interview in May. "[In] this situation, we’re not going to be able to do that. It’s just too much."

But while 35 other states obtained waivers from the federal government to help disability support programs financially survive the shutdown, Minnesota never even applied for the potential lifeline, according to Medicaid data reviewed by 5 INVESTIGATES.

DHS recently defended that decision, arguing there were "several barriers" the department faced, including not having the appropriate legislative authority to apply for federal relief.

"My understanding is that those retainer payments were only available for 30 days so we didn’t [think] that would really solve the root of this problem," Natasha Merz, DHS’ director of Disability Services, said during the hearing.

Julie Johnson, president of the Minnesota Organization of Habilitation and Rehabilitation, a nonprofit that advocates on behalf of more than 100 adult day service and employment providers, said her organization, along with lawmakers, pushed DHS to find a way to obtain the special Medicaid waiver. Even a 30-day waiver would allow the state to pay providers a portion of their lost income during the pandemic, Johnson added.

Instead, DHS told lawmakers during the hearing it wanted to focus on "alternative options" to provide services, including connecting with participants via remote technology.

But Johnson said that is not enough and that Minnesota needs to establish a retainer-based payment system, similar to what other states have set up.

"We need some support for fixed cost funding," she said.

After listening to more than 30 minutes of testimony from service providers and fielding questions from lawmakers, Merz conceded that the funding issues are something DHS would need to work on.

"I absolutely appreciate, acknowledge and understand that those flexibilities have not been sufficient revenue producers to bridge the gap," she said during the Senate committee hearing.

Smaller providers in Greater Minnesota, like Lamping’s program, which sits 136 miles north of the Twin Cities, are most at risk of shutting down. She said closing the doors in a rural area like Floodwood would have serious and significant consequences for people with disabilities even after COVID-19 closures are lifted.

"It’s a human right," Lamping said, fighting back tears. "The people we support have the right to the socialization, to their dreams, just like you and I. We shouldn’t throw people away and that’s what happens when we don’t have programs like this."