Community care providers ‘in crisis’ waiting for promised funding

Every day, when Lorie Ewing wakes up, she has a job she knows she’ll be doing from 8 a.m. until the time she goes to bed: caretaking for her adult daughter, Becca.

Becca, whose seizure disorder and medications led to a gradual decline in her cognitive function, requires full-time, one-on-one care.

Lorie, who retired in 2016 and whose husband has his own health issues that prevent him from caring for Becca, manages Becca’s medication, and helps her shower, eat, use the toilet and move around. Every night, she carries her up the stairs to bed at their home in Genesee, Idaho.

“That’s a year of 24/7 care, pretty intense care, that I’ve been doing with her.” Lorie said. “I’m getting older, I can’t do it forever. I would just be happy to have a day here and there. And it’s not even possible to do that. So it’s difficult.”

Last year, Becca was in residential habilitation at Milestone Decisions, a Moscow-based community support agency that provides care for people with intellectual and developmental disabilities.

Those support services can include residential habilitation, but also hourly or group care depending on a client and their needs. Agencies like Milestone may help with hygiene, daily living skills, cooking, cleaning and help get clients out of their homes and participating in the community.

But when the agency’s staff numbers dropped too low to support Becca’s needs, she was sent home. Lorie said although she’s happy to do things for her daughter, she worries about what could happen to Becca if Lorie became unable to take care of her.

Reimbursement is the issue

The Ewing family is far from an anomaly, said Kelly Head-Halladay, the director of operations for Westcare Management, which oversees Milestone. Since the start of the pandemic, community care providers, even more than those in other states, have been in crisis.

The biggest problem, she said, is the state’s reimbursement rate, which allows for an hourly wage of about $10.40.

Milestone was able to bring its wage up to $11.50 an hour by making cuts in other areas, Head-Halladay said. Even so, it wasn’t nearly enough, especially as the pandemic pushed competitors with a less demanding workload to pay several dollars more per hour than they could.

“No matter how much you love this population — you cannot live on what we offer,” she said.

Caroline Merritt is the executive director of the Idaho Association of Community Providers, or IACP. She says many direct support professionals take second jobs to make ends meet.

“I am hearing [about] a lot of staff members who kind of moonlight as something else in the service economy,” she said. “There was one guy who was actually sleeping in his car, waiting to be called either for a DoorDash order, or for kind of night shift agency work, and that’s how they’re getting by.”

Because of that wage gap, agencies across the state are severely under-staffed. They’ve had to run deficits, discharge clients and sometimes even close their operations entirely. Overtime for the few staff that do stay also adds to the cost, Head-Halladay said. Milestone runs about 30% overtime every pay period.

Despite all of those challenges, staff at Milestone, and other agencies, had been looking to what they thought was a light at the end of the tunnel: a promised increase in reimbursement rates as of July 1, 2022, which they had expected since late 2021. The reimbursement bump would have supported wages rising from $10.40 an hour to $14.50.

“Is it enough? … You know what, we live to fight on another day,” Head-Halladay said. “And that’s all that we want.”

That reimbursement increase was supposed to come along with a new service array, she said, but providers were also told during training that, even if the new service array was delayed, they would receive the updated rates.

Providers across the state, including Milestone, planned wage increases to take effect in July. According to an August survey by IACP, 22 out of 29 providers, or 75%, reported they had increased staff wages with the understanding they would receive a reimbursement increase July 1.

But when July came, there was no relief.

“We built around that [rate increase],” Head-Halladay said. “And then we were told, ‘Nope, sorry about that. Not going to happen.’”

The cause for that delay, Head-Halladay said, was a clause in the funding for the first two years of that new service array: The American Rescue Plan Act requires that service eligibility or rates not change. But with the new service array, which is meant to provide patients more choices in the service they get, it could be possible for some patients to lose services.

That wasn’t the only funding delay providers experienced during the pandemic. In 2021, the Idaho Legislature passed House Bill 382 in part because of lobbying by supported care agencies.

The bill funded $16 million to the Department of Health and Welfare for the Enhanced Medicaid Plan Program, and $62 million specifically allocated for enhanced reimbursement rates for home and community-based services. Those funds were supposed to be distributed in April 2021, but only started being distributed in March 2022.

Head-Halladay said Milestone had been running a deficit for the past fiscal year — but starting in July, those numbers jumped to anywhere from $20,000 to $40,000 a month.

One program Westcare managed in Boise had to close. Milestone in Moscow, she said, could last through early next year. But Milestone is also well-established, with a bigger reserve account than other agencies.

“I would say if you’ve been here less than 10 years, you’re gonna be struggling right now,” she said.

As of IACP’s August survey, 15 out of 29 providers said they were currently running at a deficit. Of those deficits, seven selected the zero to $10,000 range, three selected $10,000 to $25,000, three selected $25,000 to $50,000, and two selected $50,000 to $100,000.

“For a lot of providers, that line in the sand is coming up,” Head-Halladay said. “There are several providers who, if things didn’t change, they’d have to close their doors in November.”

Five providers in that survey reported they’d had to close an office, at least temporarily, because of staffing issues, Merritt said. But she said the true number is likely higher.

“I know there’s more than that, because obviously the ones who have closed probably dropped their membership with us,” she said. “So we’re not counting those. But there have been several closures of agencies within the last two years.”

Not every agency still operating is an IACP member, Head-Halladay added, so closures within that group would also not be counted.

What it means for clients

At this point, Lorie Ewing said she’s not counting on the state for help, and is considering moving to Oregon to get access to support services.

“We are a supposedly advanced society,” Lorie said. “It feels like we should be able to at least help families take care of those who need help.”

One Lewiston resident, Kees Beehner, has relied on supported living services most of his life because of an intellectual disability. Since 2019, he’s lived with 24-hour residential habilitation support from Opportunities Unlimited Inc. in a home with two other OUI clients.

Kees’ mother, Stephanie Beehner, said her son has benefitted from living with people outside of his immediate family, and she’s seen improvements in his behavioral issues. Kees has also learned skills he wouldn’t have had the opportunity to acquire if she and her husband were the primary caretakers.

For the Beehners, the changes to how the state regulates care has left uncertainty around what support Kees will get in the future.

OUI has some limited ability to self-fund services thanks to its thrift store in downtown Lewiston, said President and CEO Hannah Liedkie. But most of the funds from the thrift store go to things like training, technology upgrades and travel time with rural clients that isn’t factored into reimbursement from the state.

Her agency also increased its wages in July, Liedkie said. If OUI doesn’t start getting that funding back from the state, it will eventually need to reevaluate what services it can afford. The first to go, she said, would be the residential habilitation Kees relies on.

“I can’t go back on those wages. I just flat-out refuse, I’m not going to bring somebody on and say, ‘By the way, this is temporary.’ So we plan on keeping those rates,” Liedkie said.

OUI provides 24-hour residential habilitation care for six clients, including Kees.

“If we walk away from that, not only [do they not] get that service, but more than likely they will lose the housing and they will have to be institutionalized [if their family can’t care for them],” Liedkie said. “No decision that I ever want to make displaces one person, let alone six. But that would be what we would have to do.”

If Kees did lose that support, Stephanie Beehner said it would likely affect not only her son’s well-being, but her ability to work her current job, volunteer and spend time with her family.

As difficult as the Ewings’ and Beehners’ circumstances are, Head-Halladay said, clients like Becca and Kees are lucky to have a supportive family member who can take care of them at all.

Patients like Becca, Head-Halladay said, have ended up discharged to hospitals.

“They end up, maybe if they’re lucky, in skilled nursing,” she said.

Clients who need support with more emotional and behavioral needs often end up homeless, she said.

“You never get ‘kicked out of the system.’ They come back in through getting arrested, through going to the ER, through all these other areas,” Head-Halladay said. “That is happening currently. They’re homeless.”

According to IACP’s August survey, over 60% of respondents said they would need to start discharging clients within six months. Seven of those providers said they had between zero to three months left.

Providers are also turning away clients seeking services. OUI serves about 44 children, and had a waitlist roughly as long as of August. In its survey, IACP asked providers how many clients they’d turned away in the past month. The answers ranged from five or 10 to over 100 clients.

The way out

Roughly a month and a half ago, members of IACP met with Idaho Governor Brad Little’s office; Dave Jeppesen, the director of the Idaho Department of Health and Welfare; and Juliet Charron, the Medicaid Division Administrator at IDHW.

The meeting followed a slew of families calling the governor’s office with stories similar to the Ewings’.

Since then, providers have been told funding is “imminent.” Although they had not received a timeline, Head-Halladay was hopeful.

“Part of me feels I’m being silly for being cautiously optimistic. You know, that might be more of my idealism than anything else,” she said. “But I am.”

Liedkie said part of the problem — and what she hopes to see change — is that direct support professionals aren’t taken seriously or treated with respect despite the importance and demand their job requires.

“Right now, there is no Bureau of Labor Standards job description for this particular field. To me, that’s the most disrespectful part of it, is that we don’t even recognize them as a job,” she said. “You’re entrusting a person’s life with this individual, and I think that if we want the job done right, we need to treat them with the value of what that job looks like.”

On Tuesday, Oct. 25, providers were sent an email notifying them updated reimbursement rates would take effect starting November 29, 2022.

Head-Halladay said she hopes Idahoans who receive services, and their families, will get to see that their voices make a difference.

“We, as providers, we’ve been screaming for years,” she said. “Even before COVID hit. It really did take the citizens, the individuals who receive services, and their families, to really make their voices heard on this to make the needle move.”

Sun may be contacted at rachel.sun@wsu.edu or on Twitter at @Rachel_M_Sun. This report is made possible by the Lewis-Clark Valley Healthcare Foundation in partnership with Northwest Public Broadcasting, the Lewiston Tribune and the Moscow-Pullman Daily News