Underpaid & Underappreciated

No Funding to Combat Critical Shortage of Personal Care Assistants for Disabled

May 2018

BY MARK SAXENMEYER

When Michelle Lacy was a child in the 1970s, she and her father would slowly walk up and down the street outside their home, night after night. Diagnosed at birth with cerebral palsy, Michelle’s parents believed that if she could walk, she’d be OK and have a better life. Wearing leg braces, or using crutches, or with the aid of a walker, she and her dad would walk as far she could, for as long as she could. “His belief was that the more we walked and the farther he pushed me each day it would soon get easier,” Michelle remembers.

Flash-forward to 2018 and Michelle, now 52, can’t walk, despite her father’s best intentions and devoted efforts during her childhood. Michelle’s cerebral palsy (CP) has evolved over the years and she now requires the assistance of personal care assistants (PCAs) for as many as 11 hours a day. They help her bathe, get dressed, eat, and attend to other basic needs. They lift her into her electronic wheelchair (she calls it “my safe haven, my freedom”) and help guide her through the Minnesota snow, among other hurdles and obstacles. They run errands for her, prepare her meals, and assist with pretty much anything she can’t do herself. They are her substitute arms and legs–caring limbs that enable her to live an otherwise independent life.

Melissa Jensen currently works mornings for Michelle, a PCA shift that begins at 4:30 a.m. “I get her out of bed, into her shower chair, wheel her into bathroom, get her ready. There’s a lot of lifting. It’s demanding work,” Melissa explains. “Teeth, hair, make up, and then I make her a smoothie for breakfast.” It’s a work shift that fits easily into the rest of Melissa’s daily schedule. “When I’m done I get my kids off to school,” she says.

PCAs in Minnesota typically earn between $10 and $12 an hour and receive few benefits. Melissa says she makes $12.65 an hour. When she started working with Michelle 12 years ago, she made $9.75.

“Michelle didn’t choose to be in this situation,” Melissa explains, pointing out all of the everyday activities, tasks and necessities able-bodied individuals do without thought, and without any assistance. “Even her bladder is on somebody else’s schedule,” Melissa says, referring to Michelle’s reliance on a PCA for restroom assistance. “But her attitude is amazing. She’s become like family to me.”

Every morning, starting at 4:30 a.m., personal care assistant Melissa Jensen prepares Michelle Lacy for work.

The PCA program was created 40 years ago so that people with severe physical disabilities, but who could still direct their own care, could move out of expensive alternatives like institutions and nursing homes and live in the community with the rest of society.

The Minnesota Department of Human Services (DHS) administrates the PCA program; there are more than 650 approved agencies from which those in need of PCAs can hire caregivers (though it’s not required to go through an agency). Some of those who utilize PCAs pay for them 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 fact, Minnesota receives 50 percent of its PCA funding from the federal government. The feds match whatever Minnesota allocates, dollar for dollar.

According to DHS statistics, in 2017 the combined state and federal expenditure on PCA services in Minnesota totaled $616 million. This funding assisted about 30,000 residents statewide.

With that said, a significant number of people who receive PCA services, like Michelle, also work and pay taxes. Michelle says she’s been able to “successfully live on my own for the past 32 years.” She resides in an apartment in the Minneapolis suburb of Hopkins, alone, and has worked at a local hospital for 28 years, scheduling and coordinating appointments. A PCA is usually at her side–until recently. “I have now gone without consistent PCA care at my job for at least six months,” she says. “This has caused me to reach out to my coworkers for caregiving help, and that puts all of us in an awkward and unnecessary predicament.”

(Top) Michelle Lacy uses a headset with a trigger button when she answers phone calls at work. (Bottom) Michelle with her siblings and friends at Camp Courage in 1973.

In fact, Michelle’s entire life is in upheaval. There’s a growing PCA shortage in Minnesota (and around the country as well), and it’s reached a critical level, according to Jeff Bangsberg, a former disability lobbyist for the Minnesota HomeCare Association. “People with disabilities are unable to find qualified staff,” he says. “As the PCA shortage has grown, people with the most significant needs have had the hardest time finding qualified and capable staff.”

Jeff broke his neck diving into shallow water in 1974 when he was just 16-years-old. The accident resulted in a spinal cord injury known as C 5-6 quadriplegia; it left him paralyzed from the chest down, with limited used of his arms and hands. Now 60 and living in the Minneapolis suburb of New Hope, Jeff’s wife provides his personal care and he hasn’t had to personally contend with most of the PCA issues that Michelle has endured. But stories like hers prompted him to come out of retirement to volunteer his services to bring attention to the current PCA situation.

“The unemployment rate is our worst enemy,” Jeff says. New job vacancy data just released by the Minnesota Department of Employment and Economic Development (MNDEED) shows that the state’s unemployment remains at an historic low–the lowest in 16 years, in fact. “As our economy has improved following the Great Recession, fewer people have been willing to work as PCAs because the pay and benefits are lower than in almost every other occupation,” Jeff explains.

Jeff Bangsberg came out of retirement to help fight for PCA pay raises.

There are now more that 6,600 unfilled PCA positions in Minnesota–approximately 9.8 percent of all PCA positions, Jeff says. “This is the number one area of unemployment that the state has identified as they look at the job sector.” According to DHS, as of July 2017 nearly 143,000 people were enrolled as PCAs in Minnesota health care programs. But of those, less than 44,000 actually provided services during fiscal year 2017.

According to Anne Henry, who served as an attorney with the Minnesota Disability Law Center for more than four decades, “The challenge to ensure that these PCA programs have viability in times of low unemployment is really something that our legislature has to plan on, and plan for. When the market is raising pay for other jobs all over the place, the publicly funded jobs need to keep up. That’s a public obligation.”

“I don’t think people understand the magnitude of this problem,” Michelle says. “PCA companies have been unable to find enough PCAs to staff their existing clients so they can’t even take on new clients because the shortage is so great. Friends of mine, a husband and wife, were recently given 10 days to find a new company because their current PCA company told them they could no longer staff the two of them. Ten days isn’t enough time to switch companies and find and hire new PCAs, given all the DHS paperwork and the red tape.”

Erin Govrik, the executive director of In Home Personal Care in St. Paul, Minnesota says, “We’ve been talking about this with state reps and legislative committees for years. This is not a new crisis. This is a crisis that’s gone beyond critical.”

Erin says In Home Personal Care currently has about 85 clients and 225 caregivers. Her brother Kevin Sullivan, a quadriplegic, formed the company 26 years ago; he was determined to help other disabled individuals maintain their independence. Erin took over when Kevin passed way seven years ago. She says maintaining her brother’s vision has been difficult. “After we carve out overhead and payroll costs, liability insurance, and everything we need to pay for in order to maintain a professional agency, we’re able to pay a wage of about $11 an hour for the PCAs,” she explains. “That might have been fine seven or eight years ago but now, not so much.”

Michelle utilizes the Department of Human Services’ “PCA Choice” option when selecting her PCAs. This means she hires, fires and trains the PCAs who care for her. This allows her to use a PCA agency solely for fiscal support (payroll, liability insurance) and provides her more money to pay a higher wage to her PCAs, in hopes of attracting better candidates. Still, she says she’s spending more time than ever searching for PCAs. “Finding, hiring and keeping personal care assistants has become like a second job for me–a very taxing, frustrating, thankless second job,” she explains. “I post online ads for new recruits wherever I can at least once a week, receiving few responses and very little follow through on the potential hire’s end.”

“Turnover is very high,” Erin adds. “If a PCA finds a job that pays maybe a quarter more they’ll take it. They’ll leave at a drop of a hat–and I don’t blame them.”

MNDEED found that hourly wage offers in non-PCA positions continue to increase much faster than PCA wage offers–nearly 80 cents per hour over the past six months, compared with practically no change in PCA wages (two cents per hour over the past six months). “The free market will adjust to the economy and people will get pay bumps at places like convenience stores and fast food restaurants. But we can’t do that because we have to go to the legislature to ask for an allocation,” Jeff explains.

Last year, the Minnesota legislature provided half of the funding negotiated by the PCAs’ union, the Services Employees International Union (SEIU), and Governor Mark Dayton, for its contract with the state of Minnesota. This funding resulted in a 1.6 percent pay rate increase for PCAs overall, and a 5 percent increase for those PCAs who care for individuals needing 12 or more hours per day.

The pay differentiation is essential, Jeff and Michelle insist, because if PCAs are paid the same amount for assisting lower needs clients as they are for those who may have respiratory problems, feeding tubes and other far more complex needs, there is no incentive for PCAs to want to work with the much more labor-intensive group.

The 1.6 percent rate hike took effect in August 2017 and the 5 percent hike will kick in this coming July. The problem, Jeff says, is that the increases simply aren’t enough. “Ideally it would be nice if we could pay $18 an hour but realistically we’re looking for $13 to $14 dollars an hour,” he says, “and that’s pushing it.”

During the early months of 2018, Jeff and Michelle have become two of the more visible advocates for two state bills that address the critical need for an “enhanced pay rate” for PCAs in Minnesota: House File 481 and Senate File 393. The bills address the PCA shortage by advocating for a two-tier pay system. The proposal is to increase the hourly rate for PCAs who serve people for 10 or more hours per day by about $1.20 an hour (or 10 percent). Under the plan, those working less than 10 hours would not receive a pay bump.

“This would help about 3,000 disabled Minnesotans with the highest level of needs,” Jeff explains. “And those 3,000 people represent about 10 percent of the more than 30,000 people who receive PCA services. We know all levels of PCA care need an increase, but the 10 or more hour per day level is creating a staffing crisis that is causing people to lose their homes, their independence, and in some cases, their lives.”

Michelle Lacy attends a Minnesota Twins game with two of her former PCAs, Darlene Streit and Katie Molgard.

In fact, some people have indeed died due to the PCA shortage. Jeff points to a quadriplegic man in his 50s in the Minneapolis suburb of Plymouth whom both he and Michelle knew personally. Jeff says the man went without care over Memorial Day weekend last year because his longstanding caregiver asked for the holiday off. “He started trying to find somebody to fill in but couldn’t and decided to just go it alone,” Jeff explains. At some point over the course of the weekend, the man died in his bed, though it’s unclear exactly what happened. “His family doesn’t want to go public but they’re blaming the state.”

Michelle says, “There have been times when a PCA has called in sick overnight giving me little time to find a replacement. That’s when I begin the frantic search of calling everyone I can think of to see if they can come on a moment’s notice to assist me out of my bed and into my wheelchair. That’s a struggle that truly becomes a matter of life and death for me. If I’m without help for too long and I end up having to lay on one side the entire night because I’m unable to reposition myself, this can cause sores and open wounds that are difficult to heal. And some of my medications are time sensitive.”

Jeff adds, “Those lacking appropriate care can develop severe pressure ulcers, breathing problems, urinary and other infections, as well as a host of complications requiring costly hospitalization and nursing home placement. People have had to sleep in their wheelchairs overnight because they couldn’t find PCAs to fill needed shifts.”

“I’ve been to the emergency room many times,” Michelle says, “because I haven’t had a PCA that can sit with me for a long period of time while I’m sick.”

Michelle says when she was younger it was easier to find PCAs. “Friends were abundant and eager to help. But as the years pass they move on and start their own lives, their own families,” she explains. “My sister was one of my main PCAs for many years. But as she’s aged it’s gotten more difficult for her due to the lifting required to attend to me so she’s more of a backup person for me now.”

Throughout the last three decades, “I would guess that I’ve had well over 70 PCAs,” Michelle muses. Some, like Melissa Jensen, have spent years with her but “many that I’ve hired just simply drop out soon after and don’t come back.

“This can become a very taxing situation,” she continues. “Especially at 5 a.m. when I’m getting ready to go to work and a brand new PCA walks in the door for the first time. She may or may not have gotten the chance to look over my care plan ahead of time. And even if she did, it’s a whole different story when it’s the real deal. She doesn’t know the way I need to be lifted or maybe wasn’t told there would be lifting involved at all. She may not be able to handle it–or me. Most likely she’s afraid to hurt me so she goes very slowly, leaving me at risk of missing my bus ride and then not having another way to get to work.”

Perhaps surprisingly, for all that PCAs are entrusted to do with and for Michelle, and others like her, there is very little training or education (not even a high school diploma) required to become a personal care assistant. “A criminal background check and very short online quiz are all it takes to become certified,” Michelle explains. “My hope is to always look for someone that has some kind of training or background in being a personal care assistant. From there it’s up to me to train the PCA about my individual needs.”

The new Minnesota bills addressing the PCA shortage and wage concerns also tackle training issues. They propose that PCAs providing service for individuals with “high needs” should have knowledge similar to nursing assistants or home health aides, and have a similar amount of training, competency and experience.

Other states are way ahead of Minnesota on this front. The Ohio Department of Developmental Disabilities is raising the pay for Ohio PCAs who have worked at the job for at least two years and who complete 60 hours of training. Providers who meet the requirements for the “training and longevity” program will earn an extra $1 per hour starting July 1, a change designed to encourage people to stay in the field. In addition, this past fall Ohio implemented a $2.52 per hour pay increase for people serving individuals with complex needs, such as those who need help dressing and eating. The department anticipates the training and longevity add-on will cost the state a total of about $25.8 million and the complex care add-on will cost $12.9 million.

Because of the lack of qualified PCA candidates, Michelle says she’s found herself making potentially dangerous concessions. “Very often I’ve sacrificed my own care and well-being for the sake of just getting a caregiver in my home,” she explains. “I find myself working around the PCAs’ schedules instead of my own. I’ve made adjustments to shorten their shifts even when I really need them. I’ve even welcomed their children into my home despite the severe anxiety this causes me.”

She continues, “I’ve had PCAs that have stolen from me, taken money, clothes, jewelry and even medication.”

Michelle’s PCA Melissa Jensen recalls, “She would give them her ATM card to withdraw money for her. Well, one lady would take out $30 for Michelle and $20 for herself. She did it for three months before anybody noticed.”

“The one that stole money from me I took to court,” Michelle says. “She neglected to show up for the hearing though so I won my case and I was reimbursed by the PCA company I was with at the time. That same PCA once left me in the shower with the water running, to go down to the laundry room. She got locked out of my apartment and I spent an hour in the shower, unable to move, while she figured out how to get back in with the help of the property management.”

Erin Govrik of In Home Personal Care says, “It’s really disheartening what a client will do in order to keep a PCA. In a normal world you might have a policy where there’s a verbal warning, then a written warning, etc. But that tends to go by the wayside when you’re desperate.”

In March and April, Michelle testified before both the Minnesota House and Senate Health and Human Services Finance Committees, urging lawmakers to pass the Enhanced Rate for PCAs bills. She said to the committee members, “It is my hope that you will raise the salary for these truly invaluable people who have dedicated their lives in order that I and others like me can continue to enjoy life to our fullest potential,” she said. “I would like to respectfully ask you to take action because our employment, our independence and, truly, our lives are at risk.”

(Above) Jeff Bangsberg, Minnesota State Senator Jerry Relph and Michelle Lacy address Minnesota Democratic Senator Tony Lourey, Senate policy analyst Liam Moynihan, Republican State Senator Jim Abeler and Senate lead counsel Katie Cavanor at the Human Services Reform Finance and Policy Committee in March 2018.

(Below) Michelle Lacy speaks before the Minnesota House Human Services Finance Committee in April 2018 with the assistance of Minnesota State Representative Deb Kiel, while Jeff Bangsberg looks on.

Minnesota State Senator Jim Abeler, a Republican from the city of Anoka, is chair of the Senate Human Services Reform Finance and Policy Committee. Jeff says Senator Abeler “went on record during our hearing in March to state that he would like to make our legislation his number one priority this year.”

But, oh what a difference a month makes. “It’s only got a small chance of happening,” Abeler now says. “At the end of May when the session ends we’ll know for sure. Miracles happen but if I were a betting man, no.”

The price to implement the legislation is the largest barrier, Jeff says. He estimates it would cost the state about $2.4 million beginning July 1 of this year (fiscal year 2019), $6.8 million next year (fiscal year 2020), and nearly $10 million the year after that (fiscal year 2021). “It’s all about spending priorities,” Jeff explains.

Senator Abeler points to a “series of competing proposals for money” for DHS–everything from combating opioid addiction to strengthening child protection services.

“I just think the public would support PCA funding for people in these very desperate situations if they were better informed,” says retired disability lawyer Anne Henry. “To not be able to get out of bed, wondering if you’re going to die–these are devastating situations.”

The bottom line, says Senator Abeler, is that “no one will get elected or re-elected” over a pay increase for PCAs. He says most voters focus on “marquee issues” like road construction and improvement, and tax cuts.

Minnesota State Senator Jerry Relph, a Republican from the city of St. Cloud who introduced the Enhanced Rate for PCAs bill in the Senate, says, “I’ve still got the original bill tucked in my drawer and it’ll go back on the floor next year. We’ll just keep pounding on it to get it passed. We simply have to focus harder and work harder for the people in this situation. With the fiscal restraints we face, it’s a difficult job but it’s one we will continue to fight.”

Erin Govrik points out, “Minnesota minimum wage is increasing on a tiered level over the next five years so what happens if PCA pay doesn’t keep up with that? We’re not being proactive and that doesn’t paint a very healthy picture for folks who have disabilities.”

“The legislature needs to take responsibility and put the money where it’s needed most,” Jeff says. “Otherwise more people are going to go without care, more people will die, and if more people have to be hospitalized or go into nursing homes that’s ultimately going to cost the state even more money.”

Federal rules require states to pay for more expensive forms of care, such as nursing homes, but not for services that allow people to live at home.

“It’s more costly on a legislative dime to move people into an institution,” says Minnesota House of Representatives Republican Deb Kiel from Crookston, Minnesota. She introduced the Enhanced Rate for PCAs bill in the House. “You can’t quantify this but we could be saving money to keep these people living independently.”

“My cousins have been working for me as PCAs since last August,” Michelle explains. “They moved up here from Missouri but are moving back, possibly by next week. Between the both of them, they’ve covered five of my evening shifts. And then last night another PCA who’s been with me for a few years gave me her two-week notice because she’s moving out of state, too.

“I’m in a tough and frightening position now. I’ve never had to replace three people at once in such a short amount of time.”

Michelle’s PCA Melissa Jensen plans to stay put, for the time being at least. “I injured my back when I was lifting Michelle a few years ago, trying to avoid stepping on her cat,” she says. “It’s still screwed up. Like I said, it’s demanding work.”

Melissa continues, “I think Michelle is actually getting pretty depressed. Trying to find people to work for her is exhausting. And then they don’t last. This is really freaking her out. People have to ask themselves, ‘What would I do if I were her in this situation?'”

Michelle confirms the fear. “I honestly don’t know what will happen if something or someone doesn’t come through soon,” she says. “Moving out of my home on such short notice is not an option and, even if it were, it’s not what I want and it’s not what I have fought for, for so many years. I want to keep my home and I want to keep working for as long as I possibly can.

“My greatest fear is that my freedom to choose where I live will be taken away, and that decisions will be made for me instead of me being able to make life choices myself.

“I don’t have the answer. Nights sure do get long when there is so much stress. All I can do is pray–pray that God brings someone who is responsible and caring soon.”

Mark Saxenmeyer and Michelle Lacy were classmates at Thomas Jefferson Senior High School in Bloomington, Minnesota; they graduated together in 1984. Mark is now the executive director of The Reporters Inc. and you can read more about him on our Team page. Mark can be reached at .

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