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Missouri and Kansas face 'workforce crisis' of workers who care for people with disabilities

A woman wearing light-colored blouse and blue latex gloves takes the blood pressure of a woman whose back is facing the camera and seated at a dining room table.
Carlos Moreno
KCUR 89.3
Andrea Howell, a direct care worker in Olathe, takes the blood pressure of a client ahead of their special Friday night dinner.

Missouri and Kansas service providers are working long hours, waitlisting care and consolidating services as they grapple with a shortage of workers.

As most people were winding down last Friday night, Andrea Howell’s work was just getting started.

As a direct support professional, Howell provides care for people with intellectual and developmental disabilities. She spends her Fridays caring for Amber and Tonisha, two clients living at a group home in Olathe.

Any other day, she’d be cooking dinner after picking them up from their day activities. But Fridays mark a special event in the home — when they celebrate the end of their week by eating out.

“Where are you going to dinner today? What do you want to eat?” Howell asks the girls. Amber chants her favorite spot, McDonald’s, which Howell says she picks almost every week.

It’s the end of a long week for Howell, who usually spends around 50 hours a week at the group home. And she has another caretaking job on top of that.

A national workforce crisis

That staggering workload is all too familiar to direct care workers nationwide as the industry grapples with a chronic staffing shortage that’s been exacerbated by the COVID-19 pandemic.

“We were (in) a workforce crisis before COVID happened and it, of course, didn't get better. It has continued to get worked up, but just like it has across the entire healthcare spectrum,” says Valerie Huhn, acting director of the Missouri Department of Mental Health.

Huhn says nearly 77% of people that started in the field in 2019 ended up leaving. She suspects the level of pay is largely why people quit.

Huhn says state base wages are now up to about $12 an hour. That pay may have been practical when budgets were made, but the market has drastically changed in the last two years.

That change has driven waves of nurses to leave their local hospitals for higher paying travel jobs elsewhere. Likewise, local agencies say that direct care workers are leaving the field for businesses that have raised their base wages during the pandemic.

A man wearing a baseball cap, gray T-shirt and a light blue mask leans on a balustrade inside a home with wooden floors and carpeted stairs. An exit sign can be seen above the front door.
Carlos Moreno
KCUR 89.3
Demarcus January is director of Alternative Solutions, an Olathe-based direct care provider.

"Still not enough”

That’s been the case at Alternative Solutions, the Olathe-based direct care agency that Howell works for. The agency’s director, Demarcus January, says that in the first two months of the pandemic, his staff roster of about 40 employees declined by half.

January says workers were leaving at first out of safety concerns, when so much about COVID was unknown. But even when case numbers declined, his workers didn’t return in sufficient numbers to make up for those who left.

He says many left for higher paying gig work at companies like Postmates or Ubereats.

On top of that, January says it’s hard to attract applicants when businesses and care agencies are all competing for the same limited pool of workers.

“I mean, our starting salary now, during COVID, and after the initial wave of COVID, has gone from a starting salary of $14, to $15, to $16, just to get people in the door. And that's still not enough,” January says.

He says the team that was left learned “to do more with less” by picking up extra shifts and working long hours. He says he makes sure workers aren’t forced to work overtime, but it’s difficult to cover shifts when employees suddenly have to quarantine or test positive for COVID.

January says he’s consolidated their services from 11 to six group homes. Still, he worries about how the shortage has hampered his team’s ability to expand their services.

“I think that's gonna be impactful because in business, we all know if you're not growing, you're dying,” January says.

"Wake up call”

The American Network of Community Options and Resources (ANCOR), an advocacy group for service providers, says the shortage is having consequences for direct care agencies nationwide.

Barbara Merrill, ANCOR’s CEO, says the field has faced challenges recruiting and retaining staff for more than two decades.

ANCOR reports that 77% of providers have turned away or stopped accepting new referrals due to insufficient staffing, a 16.7% increase since the onset of the pandemic. The report also found that 81% providers were struggling to provide the quality of services they strive for.

Merrill says these numbers should be “a wake-up call” to policymakers.

“What that means plain and simple, is all of the extraordinary progress that we have made in this country over the years of liberating people from living lives in institutions to being able to live in the community like you and I, like anyone else — we're at extraordinary risk of losing that progress,” she says.

The report noted that 58% of providers had discontinued programs and services because of staffing challenges. That’s a 70.6% increase from pre-pandemic levels.

A woman wearing a light-colored blouse and pink surgical pants gestures while talking from a kitchen galley to a person who is seated at a dining room table with their back facing the camera and holding a water bottle.
Carlos Moreno
KCUR 89.3
Andrea Howell starts her shift at a group home in Olathe by planning what her clients will be getting for their special Friday night dinner.

Cutting back services

Local care providers are grappling with the wrenching decision of whether to cut services as they continue to struggle to retain staff during the pandemic.

The nonprofit Easterseals Midwest serves 5,000 people with disabilities, providing services that range from early childhood programs and community living services to job placement services.

Casey Melancon, the organization’s director of autism services in Kansas City, says her team declined by about 60% during the pandemic, leaving her with only a handful of workers.

“Our parent training waiting list has probably 40 to 45 individuals on it right now, which makes me lose sleep at night,” Melacon says. “Then our ABA (applied behavior analysis) waiting list has probably about 20 individuals on it currently, and pretty much at any given time. It will just continue to grow.”

Easterseal Midwest’s CEO Wendy Sullivan says that many people in the agency who do stick around are working overtime to make ends meet, making burnout an issue for even their “very, very best people.”

Hailey Coy, supervisor of employment services at Easterseal Midwest's Kansas City department, says she's “absolutely” feeling that burnout. Her job entails assessing people’s skill sets to place them and support them in jobs around the community.

That means that when they’re working, she’s working. Coy says that by most Sundays, she has no idea what her schedule will look like for the week, but long hours are almost a guarantee.

Coy says she loves her job but admits the pay can be a big factor in attracting new people to direct-support work.

“I am the one seeking out jobs for individuals and I am seeing entry level positions, like a cashier position, and I make just as much money,” Coy says. “Well, that person gets to go home at the end of their shift, and they don't have to worry about the scheduling, the planning.”

Calls for better pay

That's why organizations like ANCOR are advocating for more funding on a state and national level.

“It's not a minimum wage job and yet our industry is competing with other minimum wage employers,” Merrill says.

A pay increase could come for some workers ifMissouri Gov. Mike Parson's push for a $15-an-hour standard pay for state workers becomes law. Parson said in a news release that the raise would seek to address unprecedented turnover in many state jobs.

Merrill says some much needed relief could also come through the Build Back Better plan, a roughly $2 trillion spending bill currently stalled in the U.S. Senate. The plan would allocate $150 billion to improve Medicaid coverage for home care services for seniors and people with disabilities.

Huhn, of the Missouri Department of Mental Health, says even if federal dollars come, it takes time before they reach the states. That’s why she says they have to look at existing resources, working on recruitment strategies and making more room for upward growth.

“You’ve got to love it”

Despite the long hours and low pay, Coy says she still loves her job.

“It's almost like detective work, you get to know an individual and their interests and their strengths and you pair that with a business that you know about and what their environment is like, and what natural supports might be there,” Coy says.

January says that while higher pay may allow care workers to drop their second job, those in this field aren't in it for the money.

“They have the option to leave, but the fact that they stay let me know,” January says.

Howell, the direct care worker at Alternative Solutions, says that while better pay might persuade more people to stay in her line of work, people have to really care about what they do.

“I mean, it can be hard. Long hours, clients are sometimes hard, hard to get along with,” Howell says. “But then you go to another level and you say, ‘Okay, why am I here?’ I'm here to help them to have a better quality of life.”

Howell says her favorite part of the job is when she can tell that she’s doing a good job.

“One that maybe doesn't talk well, and she throws up the hand sign, she loves you, that's the best part of the job,” Howell says. “Or when they give you a hug and it’s unexpected, that's the best part of the job — when you know that you've done your best for them.”

More than ever, education lies at the intersection of equity, housing, funding, and other diverse issues facing Kansas City’s students, families and teachers. As KCUR’s education reporter, I’ll break down the policies driving these issues in schools and report what’s happening in our region's classrooms. You can reach me at jodifortino@kcur.org.
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