Renzo Viscardi, center, here with parents Anthony Viscardi and Cheryl Dougan, relies on round-the-clock care from home health aides. (COURTESY OF CHERYL DOUGAN/Courtesy of Cheryl Dougan)

Acute shortages of home health aides and nursing assistants are cropping up across the country, threatening care for people with serious disabilities and vulnerable older adults.

In Wisconsin, nursing homes have denied admission to thousands of patients over the past year because they lack essential staff, according to associations of facilities that provide long-term care.

In New York, patients in rural areas have been injured, soiled themselves and gone without meals because paid caregivers aren’t available, according to testimony provided to state legislators in February.

In Illinois, the independence of people with severe developmental disabilities is being compromised as agencies experience severe staff shortages, according to a court monitor overseeing a federal consent decree.

The emerging crisis is driven by low wages — around $10 an hour, mostly funded by state Medicaid programs — and a shrinking pool of workers willing to perform this physically and emotionally demanding work: helping people get into and out of bed, go to the bathroom, shower, eat and participate in routine activities, often while dealing with challenging behaviors.

Experts warn that this labor problem portends even worse difficulties as America’s senior population swells to 88 million people in 2050, up from 48 million today, and requires more assistance with chronic health conditions and disabilities.

“If we don’t turn this around, things are only going to get worse,” said David Gifford, senior vice president of quality and regulatory affairs for the American Health Care Association, which represents nursing homes.

“For me as a parent, the instability of this system is terrifying,” said Cheryl Dougan of Bethlehem, Pa., whose profoundly disabled son, Renzo, suffered cardiac arrest nearly 19 years ago at age 14 and receives round-the-clock care from paid caregivers.

“We’ve gone through hundreds of . . . workers, and there have been times I’ve found Renzo sitting in a recliner, soaking wet, because his diapers hadn’t been changed. And at times I wasn’t sure if he was being fed well or treated well,” Dougan continued. “It’s exhausting, mentally and physically. You live with a constant sense of crisis.”

Rising demand

For years, experts have predicted that a rapidly aging population’s demand for services would outstrip the capacity of what is called the “direct care” workforce: personal care aides, home health aides and nursing assistants.

The Bureau of Labor Statistics estimates that an additional 1.1 million workers of this kind will be needed by 2024 — a 26 percent increase over 2014. Yet the population of people who tend to fill these jobs, overwhelmingly women age 25 to 64, will increase at a much slower rate.

After the recession of 2008-2009, positions in Medicaid-funded home health agencies, nursing homes and community service agencies were relatively easy to fill for several years. But the improving economy has led workers to pursue higher-paying alternatives — in retail services, for example — and turnover rates have soared.

At the same time, wages for nursing assistants, home health aides and personal care aides have stagnated, making recruitment difficult. The average hourly rate nationally is $10.11 — a few cents lower than a decade ago, according to PHI, an organization that studies the direct-care workforce. There is a push on now in a handful of states to raise the minimum to $15 an hour.

For-profit franchises that offer services to seniors who pay out of pocket are also having problems with staffing.

“All the experienced workers are already placed with families. They’re off the market,” said Carrie Bianco, owner of Always Best Care Senior Services of Torrance, Calif., part of a national chain with franchises in 30 states.

Finding new employees was so difficult that Bianco started her own 14-week training program for caregivers nine months ago. To attract recruits, she ran ads targeting women who had left the workforce or had been close to their grandparents. In exchange for free tuition, graduates must agree to start working for her agency.

“There’s much more competition now — a lot of franchises have opened and people will approach our workers outside our building or in the lobby and ask if they want to come work for them,” said Karen Kulp, president of Home Care Associates of Philadelphia.

Hardest to cover in Kulp’s area are people with disabilities and older adults who live at some distance from the city center and need only one to two hours of help a day. “These people are not necessarily getting service,” she said, because workers prefer longer shifts and less time traveling between clients, so they gravitate to other opportunities.

It’s unclear how common these problems are. Neither states nor the federal government routinely collect information about staff vacancy rates, turnover rates and people going without services offered by home care agencies and nursing homes.

“If we really want to understand what’s needed to address workforce shortages, we need better data,” said Robert Espinoza, vice president of policy at PHI.

Some of the best data comes from Wisconsin, where long-term-care facilities and agencies serving seniors and people with disabilities have surveyed their members over the past year.

Hard times in Wisconsin

The findings are startling. One of seven caregiving positions in Wisconsin nursing homes and group homes were unfilled, one survey discovered; 70 percent of administrators reported a lack of qualified job applicants. As a result, 18 percent of long-term-care facilities had to limit admissions, declining care to more than 5,300 vulnerable people. (Altogether, more than 87,000 people live in 4,102 nursing homes and residential care facilities in the state.)

“The words ‘unprecedented’ and ‘desperate’ come to mind,” said John Sauer, president and chief executive of LeadingAge Wisconsin, which represents not-for-profit long-term-care institutions. “In my 28 years in the business, this is the most challenging workforce situation I’ve seen.”

Sauer and others blame inadequate payments from Medicaid — which funds about two-thirds of nursing homes’ business — for the bind. In rural areas, especially, operators are at the breaking point.

“We are very seriously considering closing our nursing facility so it doesn’t drive the whole corporation out of business,” said Greg Loeser, chief executive of Iola Living Assistance, which offers skilled nursing, assisted living and independent living services in a rural area about 70 miles west of Green Bay.

Like other short-staffed operators, he has had to ask employees to work overtime and use staff from temporary agencies, increasing labor costs substantially. A nearby state veterans home, the largest in Wisconsin, pays higher wages, making it hard for him to find employees. Last year, Iola’s losses on Medicaid-funded residents skyrocketed to $631,000 — an “unsustainable amount,” Loeser said.

Wisconsin Gov. Scott Walker (R) has proposed a 2 percent Medicaid rate increase forlong-term-care facilities and personal care agencies for each of the next two years, but that won’t be enough to make a substantial difference, Loeser and other experts say.

The situation is equally grim for Wisconsin agencies that send personal care workers into people’s homes. According to a separate survey in 2016, 85 percent of agencies said they didn’t have enough staff to cover all shifts, and 43 percent reported not filling shifts at least seven times a month.

Barbara Vedder, 67, of Madison, has witnessed the impact firsthand. Paralyzed from her chest down since a spinal cord injury in 1981, she qualifies for 8.75 hours of help a day, while her husband tends to her in the evening.

“It’s getting much, much, much more difficult to find willing, capable people to help me,” she said. “It’s a revolving door: People come for a couple of months, maybe, then they find a better job or they get pregnant or they move out of state. It’s an endless state of not knowing what’s going to happen next — will somebody be around to help me tomorrow? Next month?”

When caregivers don’t show up or shifts are cut back or canceled, “I don’t get proper cleaning around my catheter or in my groin area,” Vedder continued. “I’ll skip a meal or wait several hours to take a pill. I won’t get my range-of-motion exercises, or my wheelchair cushion might slip out of place and I’ll start getting sore. Basically, I start losing my health.”

Debra Ramacher and her husband have been unable to find paid caregivers since June 2015 for their daughter Maya, 20, and their son Michael, 19, both of whom have cerebral palsy, epilepsy and other significant disabilities. The family lives in New Richmond, about 45 minutes from the Minneapolis-St. Paul metropolitan area.

“At least three agencies told me they’ve stopped trying to hire personal care aides. They can’t find anybody, and it costs them money to advertise,” said Ramacher, executive director of Wisconsin Family Ties, an organization for families with children with emotional, behavioral and mental disorders.

“It’s incredibly stressful on all of us, living with this kind of uncertainty,” she said.

Every few months, Ramacher tries to find caregivers on her own by putting ads up on Craigslist, in local newspapers and on job boards.

“We get a few bites,” she said. “Most recently, two people came and interviewed. One never got back to us; the other got a better job that paid more.”

In the meantime, she and her husband are being paid by Medicaid to look after Maya and Michael.

“We don’t want to be the caregivers; we want to have our own life,” Ramacher said. “But we don’t have any option.”

Kaiser Health News

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.