Home health care shortages put families in trouble

Illness struck Lisa Parladé’s father in September quickly and without warning.

Serious intestinal disease, she required surgery and a long and painful convalescence. In its wake, he experienced cognitive decline. Santiago Parladé, 77, who cooked his own meals and drove his own car could no longer take care of himself. He suddenly relied on his daughter for everything, even bathing.

“He’s a person who raised me and took care of me and you want to do the same for them when needed,” said the 34-year-old student adviser at the University of Pennsylvania, “but I don’t have the training, I don’t have the expertise, I don’t have the time.”

Finding home help has become another long ordeal.

The pandemic has made home healthcare workers nationwide even scarcer than they already were. The Parladés are among countless Americans who had no choice but to become caregivers, which could harm their careers and strain relationships with the people they love most.

“I have to give him 110% of myself,” said Jessica Berger, whose 11-year-old daughter Zoe Potack has severe autism, “but I have a husband and I have my [other] girl. It doesn’t feel good not being able to devote my time and attention to all those other things and people that matter.

Even before the pandemic, home healthcare turnover rates ranged from 40% to 60%. In Pennsylvania, which in 2020 had the fourth-highest number of home health aides and personal aides in the nation, the median wage is just under $13 an hour. Then COVID-19 forced confined people to cancel home help, some fearing it would bring the virus into their homes. Hospitals have canceled elective surgeries, reducing the number of people who would typically need home care.

A survey this month of 122 members of the Pennsylvania Home Care Association found that their non-medical care staff had shrunk by a quarter since the start of 2020 and skilled medical workers by 20%. More than 90% of providers surveyed said they had refused requests for care since 2020 due to staffing shortages.

Some home health workers have found more lucrative jobs and may never return, said Denise Tyler, an expert in aging policy and long-term care at the nonprofit research institute RTI International.

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“I think there are increasingly attractive options for people to do work that may not be as difficult as home care and now pays even more than home care,” said she declared.

Nationally, the number of workers in home health care occupations fell nearly 2% in 2020, according to data compiled by Altarum, a nonprofit research and consulting firm focused on health care. health care. It has rebounded slowly over the past year, but is still below pre-pandemic numbers.

Finding home care, families said, requires navigating bureaucracy that can be infuriating. Berger noted that an agency found someone who was available to work with Zoe but was dismayed that Zoe wasn’t the senior they expected. Parladé, who lives with his father in northeast Philadelphia, described spending a month seeking care through the Philadelphia Council on Aging, only to be told his father did not qualify.

“I know I’m not the only one exhausted by the way things are going,” she said. “It’s so overwhelming, to call, call, call and get noes, noes, noes.”

Cindy Addenbrook, 43, lives in Manayunk, but from February 2020 to August 2021, she and her brother from Texas moved in with their mother, Carolyn, in St. Louis. Their 76-year-old mother had been hospitalized in 2020 with sepsis and continued to suffer from chronic infections, as well as diabetes, high blood pressure and kidney problems. Her rehab period ended around the start of the pandemic shutdowns, but over the next few months her children decided it was safer to keep her at home.

“We were doing IV antibiotics, tending to wounds,” Addenbrook said. “All these things.”

At the same time, Addenbrook’s father was in an assisted living facility and they could not visit him due to COVID-19 protocols. They saw his health decline from afar.

Both siblings worked full-time remotely, using a whiteboard calendar to ensure they didn’t have virtual work meetings at the same time.

“I’m shocked my brother and I kept our jobs,” said Addenbrook, who works in marketing.

Even if they had the means, she is not sure that they would have used home health care.

“You deal with people all the time coming into the house and not taking it as seriously as you hoped,” she said. “You are constantly afraid that someone will kill your relative.”

John Janco, from Collingswood, brought his mother-in-law, Catherine Costello, home after surgery for a broken hip just before the pandemic. The 83-year-old also suffers from dementia. He feared that one of the many health workers who came to help him would expose him to COVID-19 and worried about the quality of the caregivers.

“Who is this person entering the house? ” he said. “You have no idea where they’ve been.”

In December, Berger, 41, was thrilled to have her daughter Zoe return to their Downingtown home after living 10 months in a residential facility in Baltimore. The plan was for her to attend school during the day and then enlist aides to help her with tasks such as meals and bathing from late afternoon until midnight. evening. Instead, they have gone six weeks without finding school placement and are still seeking home health care.

Zoe’s condition includes self-harm. Her hard blows have damaged her eyes so badly that she is almost blind. At Kennedy Krieger School in Baltimore, her condition improved, her family said, but without daily professional care, she regressed.

On a recent evening, as the family sat around the table for a hoagie dinner, Wes Berger, Jessica’s husband, noted that his wife had left his sandwich untouched.

“She can’t have dinner because she has to take care of Zoe,” he said. “It’s just a juggling act. It can be tiring and stressful. »

After dinner, the family had about an hour break before Zoe’s bath. Zoe wore a helmet and padded boxing gloves to prevent her from hurting herself but seemed content hang out with the family. It was a good night, said Jessica Berger.

Zoe gets up well before dawn most mornings, screaming and stomping. Jessica Berger wakes up at 4:30 a.m. to try to avoid her daughter’s tantrums so the rest of the family can sleep, but the tantrums usually happen anyway.

Industry advocates and policymakers are pushing for higher home care wages. Pennsylvania this month agreed to an 8% increase in Medicaid reimbursement rates, half of what advocates were seeking.

“The workforce challenges, they’re just astronomical,” said Teri Henning, executive director of the Pennsylvania Home Care Association. “Vendors statewide say they’ve never seen anything like it.”

The proposed federal Better Care, Better Jobs Act would increase Medicaid funding, require Medicaid coverage for home care and make enrollment easier. In Pennsylvania, the law would increase the number of elderly and disabled people receiving care by 120,000, according to a statement from Sen. Bob Casey’s office, but it remains stalled in the divided Congress.

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Even with the increase in Medicaid and an influx of $1.2 billion from federal pandemic recovery funding, there isn’t enough to meet the demand, said Meg Snead, acting secretary. from the Pennsylvania Department of Social Services.

“Never in my life did I think I would get to the point where $1.2 billion wouldn’t completely move the needle on something,” she said.

It is now easier for families to find financial support for nursing home care than for home care.

“I can’t overstate the importance of Build Back Better and what it would mean for our systems,” Snead said of the federal legislation that would pledge $150 billion for home care.

Parladé suffered a funding crisis when after three separate assessments over the course of a month, the Philadelphia Council on Aging only offered six hours of care per week — on the condition that she pay for everything herself.

Parladé reached out to private companies, but found she couldn’t take the time she needed to determine if she’d found a good match because caregivers were so quickly booked.

“There was this pressure, I felt that immediately after meeting this person, you had to decide here, now,” she said.

Janco, from Collingswood, had similar difficulties. On a security camera, he saw an assistant doing nothing when his stepmother tripped and nearly fell, and fired the person. He struggled to find another.

Addenbrook finally found a senior living apartment for her mother in June 2021, and she is receiving morning and evening visits from a carer. Janco and Parladé recently found home care through social or family connections.

“For my father’s part, he seems to like it,” Parladé said of the carer who started about a week

There are. “He must continue to love them too.”

Home care services do more than just relieve loved ones of physical care tasks. There can also be tremendous emotional tension.

“I’m not a behavioral therapist,” Jessica Berger said struggles with Zoe that can escalate on the most basic tasks. “I am his mom.”

Others described intense feelings of isolation. The needs of their loved ones, they said, are so great that they don’t have time to connect with friends or find time for themselves.

“It was a very lonely experience,” Addenbrook said. “We were on hyper-alert the whole time.”

Parladé decided she needed to find home care around Thanksgiving, as she was increasingly torn between her roles as daughter, caretaker and full-time employee.

“I think that’s a big compelling reason why I realized I couldn’t do it myself, because I found myself so exhausted with patience and frustration,” Parladé said. “Me doing that and me being so empty, barely being able to take care of myself and doing what I thought was really shitty work, I thought it was unfair to him.”

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