Personal Care Assistant Shortages

Will Pay Raises Be Enough to Avert a Health Crisis?


September 2023

BY KIM WHITING

I met Michelle Lacy in high school in Minnesota, back in the 1980s. Michelle had (and still has) cerebral palsy—she was diagnosed at birth—and she attended classes in an electric wheelchair, always with a personal care assistant (PCA) at her side to assist with most of her basic needs. I would find her in the hall, stuck, because wheelchairs back then easily ran out of battery. Despite her many challenges, Michelle always had a smile on her face, a sunny disposition, and a great sense of humor.

I hadn’t seen or spoken to Michelle in more than 40 years, but when I reconnected with her recently, her positivity and humor were still front and center—despite the fact that her life has become even more challenging as a 57-year-old adult. Case in point, when we were sharing memories about high school, she laughed and said, “Did I ever run you over with my wheelchair?” She still requires PCAs, and these days, she says, there’s a consistent shortage of available, dependable, and qualified ones.

“For a little over five years, it’s been really challenging to find the care I need,” Michelle explains. “Not having caregivers is health-threatening and even life-threatening for me. If my caregivers aren’t able to show up for a shift, that can be a very big deal and lead to things such as skin sores (from staying in the same position too long), bladder infections, dehydration, hunger, and more. And if one of my caregivers quits, it could be months before I find someone reliable to replace them. What would happen to me and where I’d end up if I lost my current PCAs is a stress that’s constantly hanging over me.”

 

 

The Reporters Inc. originally profiled Michelle’s struggles with finding qualified PCAs five years ago, in May 2018.

“At the time that I was interviewed for the previous article,” Michelle says, “it was really hard to find good, reliable caregivers. Now it’s become close to impossible.”

And then there’s Michelle’s friend Mary Bergerson, who also has cerebral palsy and is wheelchair dependent. Michelle and Mary met when Michelle was just nine years old, at a weekend program for disabled kids. “Mary is a couple years older than me. I looked up to her and followed her everywhere,” says Michelle, adding with a laugh,  “I’m sure she found me really annoying.”

“That’s not true at all,” says Mary. “Michelle and I have always had a great time!”

Mary, too, requires the help of PCAs. She explains, “I’m perpetually one step from losing my independence and being placed in a nursing home or adult foster care. It’s extremely stressful.”

 

Michelle Lacy today (above), and a feature story about Michelle in her 1984 high school yearbook (below).

 

Thankfully for both women, and thousands of other Minnesotans, a recent historic PCA wage increase in the state could help address the personal care assistant shortage. This past January, the state reached a tentative agreement with Service Employees International Union (SEIU) after months of bargaining and negotiation. SEIU serves nearly 20,000 healthcare and long-term care workers in hospitals, clinics, nursing homes, and home care throughout Minnesota and Iowa.

The agreement included a wage increase for PCAs of about 25 percent, from $15.25 an hour to $19 dollars by January 1, 2024, and to $20 an hour by 2025. The Minnesota Council on Disability said the agreement was a “huge win” for PCAs and people with disabilities and believes it will have an impact on PCA recruitment and retention.

The agreement was funded and ratified by Minnesota’s House and Senate and then signed into law by Governor Tim Walz in May. The contract had to be passed as part of the budget process to secure Medicaid matching funds from the federal government.

According to Natasha Merz, the Assistant Commissioner for Minnesota’s Aging and Disability Services Administration, “We’re working on getting federal approval to match the funding that Minnesota is investing in these changes. We can’t offer this kind of pay increase without matching and it can take time. There are also IT adjustments to be made and other logistical changes.”

The agreement also takes important steps towards professionalizing home care in Minnesota, establishing a wage scale to provide higher pay, based on experience in the field, and ensuring that all new caregivers entering the workforce receive a high-quality orientation. Caregivers who have been working in these programs for many years will jump in pay—not just to $20 an hour—but to as high as $22.50. In addition, any worker who has provided home care for six months or longer will receive a one-time $1,000 retention bonus.

 

Natasha Merz, the Assistant Commissioner for Minnesota’s Aging and Disability Services Administration

 

“We believe these really historic investments in pay rates for PCAs will have a dramatically beneficial impact,” Merz says. “PCAs will be paid closer to what they deserve, but it’s not going to completely solve the problem. We’re aware that there has been chronic underinvestment in this program and that a significant shortage of PCAs and relative low pay for this work have made it difficult for people to recruit and retain PCAs. We’re concerned about that.”

While the pay raises are heartening news for Michelle and Mary, they’re skeptical that the improvements will be enough. Says Michelle, “When I heard about the new legislation, I wondered why it would take one to two years for the changes to go into effect, when people are having such a difficult time right now. Sadly, even when the pay goes up to $20, I don’t know that it will make much difference. There are so many jobs that pay around that amount but don’t require helping someone do things like shower or go to the bathroom. With tips, an Olive Garden server probably earns around $20 an hour, so why be a PCA?”

Mary agrees, saying, “If a person can work a job that is more desirable than caregiving for the disabled and get paid more, they’re not even going to apply for a PCA job.” She also thinks that “the incremental increases are taking too long.”

The Minnesota Department of Human Services (DHS) administrates the PCA program in the state; there are currently 947 approved agencies from which those needing PCAs can hire caregivers (though they’re not required to go through an agency). Some, like Michelle and Mary, are able to advertise for and hire their own PCAs, and those helpers are then paid by the state. Others pay for PCAs out of pocket because traditional insurance only covers primary or acute care. Many others rely on long-term health care insurance or Medicaid to help pay for their PCAs.

In 2018, there were more than 6,600 unfilled PCA positions in Minnesota. As of spring 2022, that number had risen to 7,800—another indication of the extreme challenges that people in need of PCAs have been facing.

According to a staff member at Minneapolis-based Axis Home PCA Agency who preferred to remain anonymous, PCA staffing agencies “are struggling” as well, due to the shortage of people willing to work as PCAs at the current pay rates.

The staff member explains, “The low pay makes it a position that won’t cover most people’s basic bills. Every penny more per hour is an improvement, but people on single incomes supporting their families still won’t be able to survive on $19 or even $20 an hour, so we will still probably see PCA shortages, as well as agencies struggling to make it.”

Governor Walz’ original budget proposal suggested increasing state-funded reimbursement rates for PCA programs by about 17 percent for 2024 and 22 percent for 2025. But about 60 percent of 37 Minnesota PCA agencies who responded to an April survey said they would have to close their doors or stop providing services if that legislation passed. (The survey was conducted by the Minnesota First Provider Alliance and Minnesota Home Care Association.) Smaller agencies said they’d be hit the hardest if the reimbursement rate doesn’t increase enough to offset the higher wages.

However, according to Tyler Frank of SEIU Minnesota, help is on the way for agencies. “The current state reimbursement rate of $4.90 per unit will increase by 21.4 percent to $5.95 per unit on January 1, 2024, which is the same day the $19 an hour wage floor in the new contract takes effect,” he explains. “There will also be an additional increase of 4.3 percent, or $6.21 per unit, on January 1, 2025 to cover the wage floor increase to $20 an hour on that day.”

 

 

According to the U.S. Bureau of Labor Statistics, in 2021 the median pay for home health and personal care aides in the U.S. was $14.15 an hour, or $29,430 a year.

In 2022, 13 states (Alaska, Colorado, Connecticut, Maine, Massachusetts, Nevada, New Jersey, New York, North Dakota, Oregon, Rhode Island, Utah and Washington) all paid their PCAs at higher rates than Minnesota.

The top five highest paying states:

1) Washington $18.22 (hourly mean wage); $37,900 (annual mean wage)

2) Alaska $17.58 (hourly); $36,570 (annual)

3) North Dakota $17.26 (hourly); $35,910 (annual)

4) Oregon $17.18 (hourly); $35,740 (annual)

5) New York $17.11 (hourly); $35,590 (annual)

Minnesota was among 13 states that paid an annual mean wage to PCAs between $30,070 and $32,820. The remaining 24 states all paid PCAs an annual mean wage between $29,780 and $19,710. The lowest paying states were primarily in the south: Alabama, Arkansas, Georgia, Louisiana, North Carolina, Oklahoma, South Carolina, and Texas (as well as Kansas and West Virginia).

Mary and Michelle both require help with basic daily activities that many of us perform effortlessly and without thought. Mary, who lives alone, needs assistance with cooking, housecleaning, dressing, using the bathroom, showering, and getting in and out of a chair or bed. In addition to these everyday tasks, Michelle, who has a roommate, also requires help eating, brushing her teeth, and repositioning in her chair or bed.

Despite their disabilities, both women have been active and employed for most of their lives. Most recently, Mary worked in the human resources department at Target for seven years, until 2022. She says that, in large part, her reason for leaving the retailer was due to the lack of a PCA who could help her go to the restroom during the workday. Says Mary, “I couldn’t make it eight hours without using the restroom, and I haven’t looked for a job for the 18 months since leaving Target because I still haven’t found regular and reliable PCA care.”

Michelle worked in scheduling for a hospital for more than 30 years; three years ago she says she was forced out. Says Michelle, “I was struggling to do calls because my location (in the facility) had become very noisy and distracting, so I requested a quieter place to work. I was told they couldn’t do that for me, but that they could transfer me to work in the call center. I had good friends in the department where I’d worked for three decades and didn’t want to start over from scratch in a new department, but they gave me no other options. They ultimately eliminated my position. I got a severance package and a non-disclosure saying that I couldn’t talk about it with other employees. I didn’t want to leave the job. I really liked working there and loved my coworkers. They were like family.”

Michelle continues, “Since then, I’ve been struggling to find employers who will be supportive of my disability. They see me coming and think about all the things I might need in order to work for them. Or I see that a job requires tasks like physical filing that I can’t do. Commuting to a job is also a big deal for me and can take hours, with the added time it takes to get me safely in and out of the vehicle and in and out of buildings.”

In order for Michelle to maintain her employment at the hospital all those years, she had to arrange for PCAs to help her eat lunch and, like Mary, get her to the bathroom when needed. If a PCA was unavailable, she had to make sure a friend or family member could come to her workplace, as she was not allowed to ask for assistance from co-workers. “People who are able-bodied don’t realize the challenges disabled people face,” Michelle says. “They don’t understand how hard it can be.”

Now that they’re both unemployed, the two women say they each live on about $1,100 that they receive from Social Security disability each month. Mary also gets food stamps but she says this adds only about $35 a month to her income.

Mary and Michelle find and hire their own care through PCA Choice, a government program that enables even friends and neighbors to become official caregivers, and receive wages from the state. This program, they say, allows them to spread a wider net when looking for caregivers—yet they’ve still had difficulty finding and maintaining care professionals.

Michelle says one woman who applied to be her PCA was almost 90-years-old and had to return to the workforce after her husband died. Says Michelle, “I couldn’t hire her because she wouldn’t have been physically able to do the job. She needed the money and I needed the help, but I just couldn’t risk hurting her. I need someone strong to lift me.”

Twelve years ago, Michelle met Dan Diaz (who, at that the time, was 55-years-old and working for Minnesota’s Hennepin County) in an online chat room. They became friends and after talking often and going out for meals together, Michelle asked Dan if he’d be interested in being her roommate and light-duty caretaker. He agreed, and since then they’ve split rent and Dan began being paid by an agency for his caretaking hours. He handles tasks such as housekeeping, meal prep, transportation, and errand-running.

Dan later left his job at the county to work full time as a driver for a pharmacy. Yet despite his and Michelle’s combined income at the time, it was barely enough to cover an apartment in a low-income and, they say, not very safe part of Minneapolis.

Circumstances improved three and a half years ago when Michelle discovered a program called Rumi that, according to its website, “connects people with disabilities with a compatible supportive roommate who can earn up to 2x more than a typical direct care position, tax free.”Says Michelle, “The Rumi program trained Dan and he had to get certified through them, but that allowed him higher pay with state subsidy, so we were able to move to a safer neighborhood.”

 

Michelle Lacy and her roommate/caretaker Dan Diaz

 

Dan doesn’t feel comfortable helping Michelle shower so she says that if her morning PCA isn’t able to show up, she goes without bathing. “Dan also needs me to find someone to cover evening shifts because he’s overworked,” she explains. “But I’ve been actively searching for someone to take this shift for four months without success.”

She continues, “I fear for the day when Dan tires of this job because with the lack of people willing to work as caregivers, I could lose my independence. I’ve either been unable to find someone to help me, especially on short notice, or I’ve gotten people who are unreliable. And if I don’t have someone show up in the morning, I can’t get out of bed or even change positions, and I’ll get bedsores and go hungry—to name just a few problems.”

As for Mary’s PCA care, she says that, for a long time, she’d been one of the lucky ones. Her main PCA had been with her for 30 years until she retired two years ago at the age of 70. “Since then, I’ve gotten PCAs here and there, but the pay has been too low for the kind of work they do so they don’t last long,” Mary explains.

Mary says that when one of her recently hired PCAs learned, during the first few minutes of employment, that she would need to help Mary use the bathroom, the aide said, “I can’t do that!” and promptly quit, leaving Mary on the toilet. Says Mary, “I had to call a neighbor to come over and help me get back to my wheelchair. If I hadn’t had that kind neighbor willing to help me, I would’ve been on the toilet all day.”

 

Mary Bergerson

 

Mary says she’s been so desperate that she once had to hire a high school student who was almost nine months pregnant. Says Mary, “There was so much she couldn’t safely do and I was really concerned about her or her baby being hurt, but I had no other option but to accept whatever assistance she could give me.”

Mary’s situation got worse this past January when she suffered an injury while transferring herself (because there was no PCA to help her) from a lift into a chair. “I broke my leg and my toe bones went out through the bottom of my foot,” she says.

Mary believes she was then released from the hospital too soon, to a home without PCA care and a broken lift and wheelchair. “Transitional care, which provides care when one is ready for hospital discharge but not yet ready to go home, was supposed to bridge the gap,” Mary says, “but it would’ve cost me $40 a day, and that’s unaffordable for me.”

She continues, “A skilled nurse was initially provided by Medicaid to do in-home wound care, but only two days per week, for three weeks.” Mary says she hasn’t been able to get physical therapy because she hasn’t been able to employ a PCA long enough to get her to doctor appointments. “I’m way behind the curve on my recovery because I haven’t been able to access the care I need to heal and resume my former mobility.”

Yet Michelle and Mary’s difficulties pale in comparison to what happened to Mary’s friend, 67-year-old Sheila Nelson. Sheila died this past March and Mary believes her death is the result of neglect and abuse that occurred at a care facility Sheila was forced to enter due to a lack of PCAs.

Sheila’s sister Vickie Nelson explains, “Extreme juvenile rheumatoid arthritis made it so that my sister had high care needs since the age of two. My sister couldn’t move her head and had very limited movement in her entire body and so required total care.” For example, says Vickie, if Sheila vomited while in bed she could choke and die.

Yet Vickie makes it clear: “Despite her extreme physical limitations, my sister was mentally sharp and active in church and family camps with the help of PCAs. Sheila was very close with her family, loved her friends and pets, and was a positive and happy person, Vickie says. “Her PCAs became friends and cared about her.”

Several years ago, Vickie says her sister filled out a governmental survey that asked PCA clients to rate their quality of life on a scale of one to 10, with 10 being “wonderful.” Vickie says, “Even though my sister’s physical issues limited her in many ways…her answer was ‘nine.’”

 

Sheila Nelson, with her dog Bailey

 

Yet in 2018, Sheila had to move out of her home and into a facility because of the lack of available PCAs. “And since night shifts for PCAs aren’t covered for most people and pay less, it was all the more difficult for my sister to find the PCA coverage she needed in order to remain living on her own,” Vickie explains.

Vickie says the PCAs who worked in her sister’s home, for decades, had been specifically trained by Sheila to lift and move her in ways that were safe for her, and because they were assigned one-on-one shifts with Sheila, they’d been able to be much more attentive to her needs than the care workers at the facility where she was transferred.

“Sheila had never before broken a bone, but in the five years that she was at the care facility, she twice incurred bone fractures and other times had issues due to improper lifting and moving that left her bedridden and in need of higher doses of pain medication,” Vickie explains. “She lost weight and became very frail. Sheila also contracted a serious intestinal virus that put her in the hospital and she likely wouldn’t have been exposed to that virus had she been at home. She’d never had these types of issues at home and I feel certain that these injuries and issues wouldn’t have occurred had she been able to remain at home with PCA care.”

Vickie also says that Sheila’s care facility wanted to transfer her to a nursing home, essentially acknowledging that Sheila required more time and care than it could provide. “However,” Vickie explains, “Sheila wasn’t eligible for nursing care because her issues didn’t necessitate the kind of medical care provided by nursing homes, so she remained where she was.”

On March 1, 2023, Mary sent a letter to the Minnesota Attorney General’s Office, voicing her concerns about the care Sheila was receiving. “This care facility continues to be neglectful, incompetent, disrespectful and downright dangerous in her care,” Mary wrote. She called Sheila “extremely fragile” and stated, “I don’t know if there has ever been an investigation into this facility, but I need to do something before my girlfriend ends up dead…”

Eight days later, the AG responded to Mary in a letter, explaining that “the Legislature delegated the authority for this type of situation” to the Minnesota Department of Health’s (MDH) Office of Health Facility Complaints and suggested Mary contact MDH with her concerns. Both Mary and Vickie did so, and after each was interviewed by a Health Department official, they were told that MDH had launched an investigation into the matter.

However, it was all too late. Sheila died on March 18.

Garry Bowman, the public information officer for MDH Health Systems Bureau, tells The Reporters Inc., “MDH’s Health Regulation Division makes all investigative reports public when final. The division does not publicly confirm or deny ongoing investigations. All final reports are searchable by the media and public on the Minnesota Health Care Provider Complaints webpage.”

As of September 3, we could find no information on the webpage about Sheila Nelson’s care facility.

 

 

The stories of Sheila, Mary and Michelle illuminate just some of the significant hardships and struggles that the PCA shortage has created for the disabled—and continues to cause.

I look back on the many challenges Michelle faced while we were in high school years ago and wonder if age has magnified them. She says that as she’s gotten older, her organs have weakened, her skin has gotten more fragile and prone to sores from lack of movement, and, like many of us, her cognitive functioning isn’t what it used to be.

But unlike many of us, these conditions have increased her caregiver needs—at a time when the supply of willing and qualified help continues to decline.

Says Michelle, “The more people who are aware of the extreme challenges that the disabled are experiencing in finding caregivers, and the health-threatening and life-threatening effects that lack of PCA care can have, the more likely we are to get wages for PCAs approved that will truly make a difference.”

Mary adds, “PCA care is work that most people don’t want to do, but it’s vital because the disabled cannot live their lives without these caregivers. In order to attract enough workers to cover the needs of the disabled, PCA pay will still have to be raised significantly.”

And Vickie insists, “If PCAs were better compensated, I don’t believe my sister would’ve had these problems,” explaining that better pay would have made it easier to find the kind of qualified PCAs Sheila needed to remain in her home. “The last years of her life would have been happier and healthier,” she says.

Natasha Merz, of Minnesota’s Aging and Disability Services, is hopeful. “We’re optimistic that wage increases will make a difference, but clear-eyed that the PCA shortage won’t be solved with one pay increase, and there are plans to ask for more in the future,” she says. “We need to emphasize how vital PCA workers are and work together as a state to increase the visibility of these jobs, recognize them, and compensate them.”

Despite it all, Michelle still manages to maintain the healthy sense of humor I remember from the early 1980s. Case in point: when her wheelchair battery recently started shutting down again without warning, she remarked with a laugh, “Takes me back to high school!”

 

Kim Whiting is a Reporters Inc. Advisory Committee member. You can read more about her here on our Team page. She can be reached at

 

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