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For the past 15 years, Antonietta Giovanni has been caring for her son as her full-time job.
Giovanni, a personal care assistant (PCA), spends her days making sure her son, Daniel Petros, gets his proper exercises and activities. Petros, who is 27, has autism and suffers frequent seizures; he requires constant care.
Before the pandemic, a second PCA came to care for Petros on most days, relieving Giovanni from her duties and allowing her to do her work on the executive board of the Service Employees International Union Healthcare Minnesota, the statewide union. She also volunteers for The Arc Minnesota, which advocates for people with developmental disabilities.
But in July, the daughter of Petros’s other PCA fell ill with COVID-19; she had to leave her job. “I stopped most of my other work,” Giovanni said. “I had to concentrate on him.”
Since then, Giovanni’s work as a PCA for her son has required her attention 24 hours a day.
PCAs had plenty of job challenges before the pandemic. Their wages are low—typically around $14 per hour—and their benefits scant. COVID-19 added new obstacles.
Giovanni, for example, said she now needs to provide her son’s other PCAs with personal protective equipment.
In current job negotiations with the state, unionized PCAs are responding by asking for higher wages, new overtime pay, and better training on the job.
Giovanni emphasized that if wages aren’t increased, her son and people like him will continue to lose PCA workers to less-skilled jobs.
“If McDonald’s is going to pay $15, they’re going to leave me,” Giovanni said.
Low pay pushes caregivers elsewhere
PCAs describe their work as similar to nursing, but with added domestic tasks like cooking and cleaning for their clients.
“It’s like what you do normally after you wake up,” said Nazra Ahmed, who also cares for an adult son with autism. She has been working with her adult son since he was two years old, with the help of other PCAs. “You wash yourself, bathe, cook, clean—the whole deal.”
SEIU Healthcare Minnesota represents about 20,000 PCAs like Giovanni, who get their funding through Medicaid. Another 20,000 PCAs work privately.
A little less than half the state’s PCA workforce care for a family member or a loved one, like Giovanni and Nazra. The rest care for strangers.
The state doesn’t keep demographic data on PCAs. But SEIU Healthcare Minnesota executive vice president Phillip Cryan said that based on the union’s own surveys, PCAs are disproportionately women of color. Nationally, 87 percent of PCAs are women, according to a report by PHI, a nonprofit based in New York that advocates for care to people with disabilities and the elderly. More than 60 percent are people of color, and one-third are immigrants.
In Minnesota, Hmong and Somali PCAs exceed their representation in the overall Minnesota population, according to the union. Giovanni is originally from Eritrea; Nazra is Somali American.
Although tens of thousands of PCAs work in Minnesota, both their union and state officials say that the workforce is too small to meet the needs of people with disabilities who rely on them.
The state’s workforce numbers suggest that most PCAs who train for the job don’t end up actually working in the field. In July 2018, the date of the most recent data available, more than 150,000 people were enrolled with the state as PCAs but only about 43,000 were offering services as one. Giovanni and Nazra say the pandemic has only exacerbated this shortage.
Minnesota Department of Human Services Assistant Commissioner Gertrude Matemba-Mutasa blamed the problem on a low Medicaid reimbursement rate “that has not kept pace with inflation or with reimbursement rates for similar services.”
“Low wages and a lack of benefits may cause PCA workers to leave the profession to seek a livable wage in a different industry,” Matemba-Mutasa said in an emailed statement to Sahan Journal.
New contracts are due in the coming weeks as part of the state’s next biennium budget, which Governor Tim Walz must propose later this month. Matemba-Mutasa declined to comment on the negotiations, saying that they are ongoing.
Though the union isn’t asking for a specific amount of money in its negotiations for raises, Nazra said she believes PCAs should make roughly $20 an hour, plus benefits.
PCAs first unionized in 2014, a year after the state Legislature granted them the right to do so. In previous contract negotiations, the union was able to secure a wage increase of $1.25, enlist the state to provide free training sessions, and receive paid time off.
Last fall, the state Legislature approved a temporary pay increase to PCAs of 8.4 percent. It also increased the number of hours PCAs can work each month from 275 to 310. Both of these provisions are set to expire in early February.
People with disabilities hurt most
Brittanie Wilson has lived her whole life with arthrogryposis, a condition that weakens her joints and affects how she uses her muscles. Her PCA helps her dress in the morning, shower, and complete routine tasks like shopping for groceries, cooking meals, and visiting the doctor’s office. Help like this allows Wilson to live a productive life and work a day job as an adjudicator for U.S. Bank.
The pandemic presents a bind for patients and their caregivers, Wilson said. Both need to trust that the other is isolating properly to prevent themselves from getting and spreading the virus. Both also rely on each other for their livelihoods.
“It feels like you’re caught in the system and you struggle with no way out,” Wilson said.
Despite the struggles of caregivers, PCAs and their advocates say the new issues caused by the pandemic impact people with disabilities the most.
For most of this year, Petros, Giovanni’s son, hasn’t been able to visit his physical therapists or go to the gym to perform his prescribed exercises.
“He’s regressing on so many levels,” Giovanni said. “Honest to God, I’m suffering.”
Nazra’s son has also regressed over the last year because he hasn’t been able to go to his usual therapies. His situation is all the more complicated because he cannot talk, she said.
“I’m not able to tell him what is going on because he doesn’t understand,” Nazra said.