It’s happened before.
New hires flake, leaving Shiloh Blackburn without a caregiver a day or two or three. Or, once they’re on the job, they might be late to work or quit within a few months. Applicants are no-shows for interviews.
She can recite the many times it’s happened over the years. A few weeks ago, one new hire “skipped town.”
When workers fall through, her parents typically help Blackburn, who has cerebral palsy and uses a wheelchair for mobility, in day-to-day tasks, such as getting out of bed. But they’re getting older, Blackburn said, and can only help so much.
The day the worker skipped town, Blackburn recalled in a recent interview, “I was livid. But, what can you do?” This year’s been a cycle of “putting out an ad for caregivers,” interviewing, hiring and re-hiring for Blackburn. It’s an all-too-familiar story in Idaho’s direct care industry that’s become more and more common during the pandemic.
Disability advocates, home care workers and lobbyists say the pandemic exposed the fault lines of a fraught home care industry. Relatively low wages, sometimes long hours and taxing work have created years of staff turnover in many health care industries. The added risk of infection, without additional pay for overtime, has only worsened things.
“What we hear from individuals, families and service providers is they can’t attract the amount of staff needed to meet their demands,” said Christine Pisani, executive director of the Idaho Council on Developmental Disabilities.
State relief has, until recently, addressed staffing and safety issues in congregate living facilities, such as nursing homes and assisted living centers, where virus outbreaks have led to half of all COVID-19 deaths in Idaho. New aid approved in late September, through a state committee that doles out Idaho’s pool of federal CARES Act funding, sets aside $38 million to reimburse losses that Medicaid providers absorbed during the pandemic.
But Pisani doesn’t see it as promising.
“$38 million doesn’t go very far when you think about the number of providers across the state providing a range of coverage,” Pisani said.
The aid reimburses for up to four-fifths of Medicaid revenue that providers might have lost during the pandemic, requiring providers to submit detailed reports on their losses, unexpected pandemic-related costs and any other aid they received.
Lydia Dawson, executive director of the Idaho Association of Community Providers, says the aid is too narrow to fully address issues in the direct care industry.
“It’s incredibly targeted and limited to the most drastic cases of Medicaid providers that are struggling right now,” Dawson said. She notes that “It’s not an additional distribution,” which state aid for nursing homes was. “It’s a reimbursement up to 80%. So it still requires you to carry a 20% deficit to what you’d need from your basic operating expense.”
The aid will help somewhat, she said. It can help stabilize budgets. But does it address long-standing staffing issues?
“When we’re talking about the direct care workforce, we had a shortage prior to the pandemic,” Dawson said. The industry is “getting by on a shoestring of staffing to support people who need support 24 hours.”
Many disabled people receive help from direct caregivers through companies funded by Medicaid.
Blackburn hires her caregivers herself. She’s been a disability advocate in Idaho for more than a decade, involved with several groups that focus on ensuring that disabled people have access to resources and care that enhances their autonomy.
When she received care through traditional Medicaid disability services, she said some providers had steadfast rules that didn’t accommodate her needs. She has an emotional support cat to help her cope with anxiety. But some providers, she said, won’t necessarily help take care of the cat.
Almost two years ago, she switched to hiring her own caregivers under Medicaid’s “self-direction” program. It’s allowed her more freedom to hire people she trusts.
“It really is an intimate job, an intimate partnership because of my personal care needs,” Blackburn said. They’re “things that you wouldn’t normally do in another job, so you need to be able to know you can trust the people you hire because sometimes there will be personality conflicts.”
A good caregiver, Blackburn said, has “reliability,” “accountability,” and is honest. In some situations, caregivers will help clients out of bed through a hoyer lift, a mechanical device. And they might help clients be mobile throughout the day, helping with personal hygiene, transporting them to the bathroom, the grocery store and outdoors.
Blackburn said hiring on her own helps make sure she and her caregivers, who she’s around much of the day, have personalities that mesh.
Hiring, on your own or through a business, doesn’t mean they’ll stay.
“Some people would work three weeks, some people would work three or four months, and then just leave,” she said. “There was a time where I would put out the ad, and people would show interest, but when it came time for the interview, they were a no-call or no-show.”
So far this year, Blackburn has hired six workers, and lost three.
Medicaid providers in Idaho who employ direct care workers receive less than $20 an hour for every hour of work they do. But overhead costs such as insurance and taxes mean the effective pay rate is often much lower. Blackburn tries her best, but she can only afford to pay $11 an hour when workers start.
The Idaho Department of Labor estimates the median salary for food service workers is $20,280, which translates to about $9.75 an hour.
Leo Vega has been a direct care worker for almost a year. It’s been good, steady work. The regular schedule makes it easier for him to help take care of his daughter. His old job, installing drywall, paid more, but gave him less time at home.
Vega’s fiancée was pregnant when he heard about Journeys, an Idaho Falls company that serves disabled people through Medicaid-funded home and community-based services, which involve group care for patients during the day, but where patients live at home as opposed to in a congregate living facility.
Twice since March, the company suspended services and closed shop — first during the state shutdown and again later, when a COVID-19 scare surfaced. Both times, Vega went on unemployment and made more on unemployment than the $9 an hour he makes from working.
His benefits ran out just as Journeys re-opened. “Yeah,” Vega said, “you’re making more money, but you’re trying to get back to normal.”
“Everybody talked about it when we got back to work,” Vega said. “It was not a secret or anything.”
The job’s like any. “It’s definitely something else every day,” Vega said. He likes the work. His clients are his friends. One is his former classmate.
“It’s not the best-paying, and I’m just kind of going day by day and seeing what happens,” Vega said. “But as far as looking for another job, I haven’t really been looking or anything. Just making the most of what I have right now, I guess. Definitely, it’s not the best paying. But it’s a job.”
These issues aren’t unique to home care workers, said Randall Hudspeth, executive director for the Idaho Center for Nursing. They span lots of care sectors.
“It’s a looming crisis for our state,” he said. “We do not have sufficient numbers of nursing assistants, certified nursing assistants in the state to meet the demand for jobs.”
Jobs in nursing homes and assisted living facilities, along with home and community-based services, have had high turnover rates for years, he said.
“Many people take certified nurse aid jobs as temporary jobs or short-term jobs, but it’s not normally a career goal,” Hudspeth said. “… COVID has exacerbated that a bit because no one wants to expose themself (to the virus).”
Hospitals were among the hardest hit by the pandemic, as many people delayed or forewent preventive care procedures, including what are commonly called “elective” procedures.
Swaths of those hard-hit institutions have received rounds of federal aid already. Those who haven’t might qualify for some of the $38 million in new state aid through the Idaho Medicaid Provider Funding Opportunity. Exact projections aren’t readily available for how many providers could qualify, nor for how much aid the department anticipates will be requested. The aid’s application period ends this month.
State health department spokeswoman Niki Forbing-Orr said Idaho has over 9,000 Medicaid providers. But of those 9,000, only those who earn over half their income from Medicaid services can qualify for this state aid. Forbing-Orr said the department doesn’t know how many providers could be eligible because “Medicaid does not collect provider-specific revenue information.”
“We wanted to direct this aid to providers who are most in need and who did not have other federal assistance, which is why we are looking at lost revenue,” Forbing-Orr said. “In that sense, it is targeted.” She also noted that Health and Human Services “provider relief funds have been distributed to many Idaho Medicaid providers, and we don’t want to duplicate that assistance.”
The state aid, approved by a governor-assembled committee, can help reimburse up to 80% of lost revenue that they expected to receive through Medicaid between March 16, 2020, and Sept. 13. Forbing-Orr said applications will be processed on a “first-come, first-served” basis.
Some worry the fund is too scant to address funding issues across different providers. What’s more, for providers already walking a tight fiscal rope, the aid won’t address deeper funding struggles.
“Even when you’re expecting 100% of revenue,” said Dawson, with the direct care worker association, “there was still a dire need for additional funding.” This aid “is addressing lost revenue. It’s not addressing additional revenue to address the workforce shortage.”
Some workers gave Blackburn a heads up before they quit. And “some of them just quit showing up,” she said.
“It’s created a lot of sleepless nights and stress on not only me, but the caregivers that have remained,” she said.
When one of her caretakers skips a shift, Blackburn either has to call in another caregiver, or ask her parents for help. Or her mobility is restricted for hours.
“If somebody does not show up in the morning, I’m stuck in bed all morning,” she said. “If somebody does not come at night, then I’m stuck in the wheelchair at night.”
She has caretakers on call to help if needed. But some have to balance their work schedule with their school schedules. One of her four total caretakers went on a camping trip a few weeks ago with someone who later tested positive for COVID-19. That meant only having one caretaker full time and one on call for two weeks.
It also meant another trip to her parents for a few days.
Blackburn has been navigating getting health care for disability for years. An activist involved with local and state groups, she’s familiar with nuances of the Medicaid’s structure for disability care.
The independence of hiring her own caretakers, ones she trusts, through the self-direct program, has been crucial. She gets to choose who she’s with and how they care for her.
On traditional services, she’d have to deal with a “middle man” and abide by their rules. But on this, she’s boss. The staff retention issues are the same both ways. It’s her hiring and firing people, or it’s a company hiring or firing people. This way, she at least gets a choice.
“With self-direction, I’m the boss. What I say goes. If I don’t like something, I can tell them,” Blackburn said.
But, she’s in the hiring cycle when staff troubles hit, a burden that’s typically left to companies who employ caregivers. The extra work is worth it.
“I would much prefer that stress than to put my life in a position where a middle man, or a third party, has a say in how I live my life,” Blackburn said.