Shortage of paid caregivers keeps family members up at night, hoping for “something sustainable”

Excellacare Care Provider Sarah Sutherlin helps her client Carmela Palamara, 92, of Brownstown stand up to stretch her legs after the two color and play a game of UNO at Palamara’s home on Wednesday, April 14, 2021.

Misty Evans stands in her client Ric’s living room in Midland, helping him pick out a record to play on the turntable.

“Which one do you want?” she asks. Ric loves popular music from the 1950s, 60s and 70s. “Boy oh boy oh boy,” answers Ric.

Music selection is just one of the many tasks Misty helps Ric with during her shifts as a direct care worker. Ric, whose last name we’re withholding at the request of his parents, is 58. He has cystic fibrosis and lives in his own, subsidized apartment. He has profound intellectual and physical disabilities and needs care around the clock. Sometimes he hits himself. Sometimes he hits his caregivers.

Evans helps Ric with just about everything: using the toilet, showering, getting into and out of his wheelchair.

“Daddy?” Ric asks Misty. “Daddy’s gone home,” Evans replies. Ric wants to know why. “To do some stuff for Mom,” Evans responds.

Evans is one of roughly 60,000 direct care workers in the state who take care of the elderly or people with disabilities in their own homes.

“You can start at Target at $15 an hour. We start at $10.50. You can’t compete with that.”

Besides cleaning, cooking and personal care for Ric, a typical shift also involves a lot of verbal engagement, plus short walks outside, or outings into the community. Ric has a limited verbal ability but his caregivers have learned how to figure out what he wants.

Evans says the alternative for Ric, were direct care not available, would be a group home or nursing home.

“Group homes and nursing homes are much more expensive than what we do,” says Evans. “And our people are much happier, and they get the self-determination that every adult citizen deserves.” Even so, Evans says the pay for direct care, which is set by Medicaid, is far too low.

“It has been so, so hard to keep good people,” Evans says. “In our area, you can start at Target at $15 an hour. We start at $10.50. You can’t compete with that.”

A significant worker shortage now, soon to get worse

Advocates, state and county agencies, private agency, and caregivers for the elderly and disabled pretty much all agree: something needs to be done to address the shortage of workers like Misty Evans.

Most home care workers get an hourly wage of $9.50 to $12 an hour, with no benefits, including no paid sick time, and no health insurance. Medicaid sets the basic wage, and states that want to pay workers more have to find ways to come up with the extra money.

Excellacare Care Provider Sarah Sutherlin stands outside the home of her client’s home in Brownstown on Wednesday, April 14, 2021.

Many in direct care work more than one job: one that offers health insurance, and their direct care job. Retention is a huge problem for agencies that assign the workers.

Many people in the industry are actually caring for relatives or friends, and those who had to quit full-time jobs with better pay often find themselves struggling to make ends meet.

In addition to the current shortage, state officials estimate Michigan will need an additional 178,000 direct care workers in the next ten years to meet the growing demand.  That’s more than twice the current workforce.

Advocates say even now, the shortage is having a heartbreaking impact on some families. Some can’t find the direct care workers they need, requiring them to move someone who doesn’t want to leave home into a group home or a nursing home.

Some people who move from the hospital to a nursing home for what they thought was short-term rehabilitation find they can’t return home, because agencies in their area do not have enough workers to make that possible.

“The unfortunately reality is these jobs are considered low quality largely because of political decisions that assign low value to jobs performed by women, women of color and immigrants – which make up the majority of the direct care workforce.”

Michigan is not alone. States across the nation are trying to find ways to address the shortage. But nearly all of those ways require more spending.

Low paid, untrained, and undervalued

There are no federal or Michigan state training or certification requirements to work as a direct care worker in someone’s home.

The pay is low, the benefits are virtually non-existent, overtime is common, and the work is both physically and emotionally demanding.

“The unfortunately reality is these jobs are considered low quality largely because of political decisions that assign low value to jobs performed by women, women of color and immigrants – which make up the majority of the direct care workforce,” says Emily Dieppa, director of workforce development for PHI, a caregiving advocacy and research group.

Dieppa says in reality, the jobs are extremely complex, requiring physical labor and the ability to manage complex health conditions, along with requiring a high degree of social and emotional intelligence.

Loving the job isn’t enough – but it helps

There’s a great deal of churn in the direct care industry because of the low wages and difficulty of the work. But some say they stick with it despite that, because it’s so meaningful. They like being able to have a profound effect on their clients’ quality of life.

That’s the case for Excellacare agency employee Sarah Sutherline, age 66. We met her during one of her shifts at the downriver Detroit home of 92-year-old Carmela Palamara.

Palamara sits at the dining room table, huddled in the folds of a thick flannel shawl, while Sutherlin makes her breakfast – eggs and toast, the toast practically burnt because that’s the way Palamara likes it.

Excellacare Care Provider Sarah Sutherlin secures her phone as her client Carmela Palamara, 92, of Brownstown signs her name to clock Sutherlin out after finishing coloring and playing UNO together at Palamara’s home in Brownstown on Wednesday, April 14, 2021 as her family’s dog Sophie naps under the table. Sutherlin has done in home personal care and homemaking to help her live independently three days-a-week for the last three years.

“Carmela’s morning is usually getting her up, dressed, do her hair, and make her a hot cup of coffee,” says Sutherlin. “Then medications, breakfast. And she has a routine, most of the time, which is, ‘I don’t want to get up today, I’m cold!’ But usually when I prompt her, we can get her moving and I think she feels better after she gets up and starts moving.”

Sutherlin says it’s as important to keep the client mentally engaged as the other things she does, so she keeps up a steady stream of conversation with Palamara as she works.

Palamara’s memories are fading, so Sutherlin also tries to help her remember things.

“Did you see the girls yesterday, your girls, Gracie or Gina?” she asks. Palamara concentrates, then answers, “I saw Gracie. I don’t know if I saw Gina.”

Sutherlin says she tried to retire, at age 62, but she missed the work too much, and came back. Now, at her current agency, she has something of a specialty: caring for the very eldest of the elderly.

“I think that’s why they live as long as they do,” she says. “Because they’re able to have that sense of independence and (know) that they’re valued. We’ve got 92, 94, 97 year olds, that live independent – and I love seeing that because I want to be there one day!”

Some states work semi-cooperatively with unions to boost wages

Joy’e Willman is a direct care worker in Portland, Oregon. She took part in the SEIU-Oregon’s organizing campaign in the 1990s, for home care workers in the state’s largest Medicaid program. She says until the union was formed, she and others like her labored alone, unable to better their working conditions.

Afterwards, SEIU-Oregon gathered signatures on a ballot question and asked voters to approve a new state agency, which would train direct care workers, and negotiate contracts with their union. Voters approved the measure.

Willman says the first contract was a complete game changer. In addition to a substantial pay increase, they gained access to workers compensation, and above all, health insurance.

“I went years with no – almost 20 years – with no health care at all,” says Willman. “And to tell you the truth, when I got my health care card, I sat down and cried like a baby. I mean, I had teeth rotting out of my head and I couldn’t get them taken care of.”

Afterwards, with each subsequent contract, wages and benefits for Oregon workers continued to improve. Today, Oregon home care workers are paid $16 to $19 an hour, with benefits, while Michigan home care workers are paid $9.50 to $12 an hour, with no benefits.

“A street fight”

In the early 2000’s, Democratic leaders in Michigan, including then-Governor Jennifer Granholm, noticed what Oregon and a handful of other states were doing, and decided to follow suit. The Michigan Department of Health and Human Services helped create a joint state-local agency, which began to provide training for the first time for direct care workers.

Excellacare Care Provider Sarah Sutherlin changes sheets and pillow cases while cleaning the room of her client Carmela Palamara, 92, of Brownstown at Palamara’s home in Brownstown on Wednesday, April 14, 2021. Sutherlin has done in home personal care and homemaking to help her live independently three days-a-week for the last three years.

The agency also set up a registry to match clients with caregivers, so families desperate to find a direct care worker wouldn’t have to rely solely on word of mouth or ads.

At around the same time, the SEIU Michigan organized home care workers. The first negotiations between the union and the new agency resulted in a 36% increase in pay for many workers in 2003. But there was fierce political opposition from the start from Republicans leaders and business groups like the Michigan Chamber of Commerce and free-market groups like the Mackinac Center for Public Policy. Pat Wright of the Center calls what followed “a street fight.”

Wright says some of the direct care workers who are related to the people they care for didn’t want to be in a union and didn’t want to pay dues. And he says SEIU-Michigan could have lobbied the legislature for better pay, without unionizing the workers and collecting dues.

“The unions were using it as a way to boost membership,” he says. “It looked like a methodology to fatten their bank account.”

Opposition to the arrangement smouldered until 2010, when Republicans gained a new weapon in the street fight: the election of Republican Rick Snyder as governor.

Within two years, the local-state agency was defunded and dismantled. And a state law was amended so direct care workers couldn’t be in a union.

Voters rejected a subsequent ballot initiative which was organized by the SEIU to re-establish the system.

“It’s the one thing that keeps me up at night. We want something sustainable. And we don’t have that here in Michigan.”

Wright says it was the right thing to do. It protected Michigan’s already strained state budget from the risk of additional expenditures for Medicaid.

But many advocates disagree, and say the dismantling of the program set the state back years.

A search for other solutions

Emily Dieppa of PHI says she is actually feeling pretty optimistic that things are soon to get better for direct care workers in Michigan.

Dieppa used to work for SEIU-Michigan. Current officials with the union declined multiple interview requests for this story.

Now, at PHI, Dieppa is working with others on a statewide initiative to bring more attention to the issue, starting with an effort to make training available for direct care workers. People in advocacy groups, county and state agencies, private home care agencies, workers, and clients, convened a summit in February about how to move forward.

“I think the critical nature of this work has become less invisible given the impact of COVID-19. This workforce has always been essential, and it’s only now that our public consciousness is raising around these issues,” she says.

“Stop kicking the can down the road”

Meanwhile, Robert White is getting impatient. White has two adult sons, both disabled, who need direct care workers to help them live independently.

He says he’s tired of going to Lansing and Washington year after year after year, asking politicians for better wages and benefits for the people who care for his loved ones.

“I’m in my 70s,” says White. “I don’t know how much longer I’m going to be around to advocate for them. It’s the one thing that keeps me up at night. We want something sustainable. And we don’t have that here in Michigan.”

In the end, “something sustainable,” is going to mean more money, from somewhere. Perhaps the state government, perhaps the federal government, or both. President Joe Biden has proposed $450 million as part of his American Jobs Plan for direct care and other caregiving programs in the U.S. Advocates say there’s one action in Michigan the state legislature could take right now to at least make a start: Make permanent the $2.25 per hour pay bump the legislature approved during the pandemic. The pay bump expires in September.

That extra money could help a lot of direct care workers get one step closer to a living wage.

This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group is supported by the Solutions Journalism Network.

The collaborative’s first series, Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to challenges facing caregivers of older adults.