Arc and Personal Care Aides Feeling the Pinch

Very interesting story on DSP’s from the Chicago Tribune.

Tony

BRIDPORT, Vt. — The yellow squash has an ugly rotten spot. “Mommy’s little secret,”
Amanda Sheppard says as she surveys mounds of produce at the local food pantry. She’ll
take the handout, knife away the rot and her family will never know.

Sheppard’s survival tactics are finely tuned after seven years as a personal care aide, the
fastest-growing job in America. Selecting a box of Cheerios, she spies a 6-pound can of
tomatoes; she’ll divvy it into glass jars, and it’ll last weeks. With what she has picked up today,
free school lunches for her 8-year-old and suppers at the Congregational Church off the
common in Middlebury, Vt., her family won’t go hungry.

Supermarket shopping can be a luxury because of what she does for a living, making $9.78
an hour, with no benefits or guaranteed hours. She is one of more than 900,000 personal
care aides — caregivers who provide comfort and companionship for the elderly and disabled
and perform daily chores so they can remain in their homes. It’s a signature occupation of a
post-recession economy creating mostly low-wage jobs.

The number of PCAs, as they’re called, will increase 70 percent from 2010 to 2020, making it
the fastest-growing job in the country, according to the Department of Labor. The trade is
exploding as the country ages and Medicaid focuses on keeping people out of nursing
homes and other facilities. That saves money and requires an army of caregivers like
Sheppard who are helping fill the growing ranks of the working poor.

Sheppard, 31, is a combination groomer, cook, housekeeper, guardian and friend. Her
schedule is typical for a PCA: spotty and unpredictable. She has one full-fledged client and
two who can’t pay her at the moment. She tends to them anyway. It’s a generosity Kent State
University sociologist Clare Stacey found was common among the home care workers she
studied for her 2011 book, “The Caring Self: The Work Experiences of Home Care Aides.”
They spend extra hours with their charges knowing they won’t be reimbursed because, as
Sheppard says, “What am I supposed to do, just leave them?”

As an independent contractor, not on the payroll of a home care company, Sheppard isn’t
in the Bureau of Labor Statistics tally. While the government counted 985,230 PCAs in 2012 —
that’s a 44 percent increase from 2010 — there were an additional 800,000 like Sheppard who
weren’t included in the category, “and that’s a very conservative estimate,” says Abby
Marquand, an associate director at the New York-based Paraprofessional Healthcare Institute,
an advocacy group for direct-care workers, 90 percent of whom are women.   

The average hourly pay for the PCAs the government tracked in 2012 was $10.01, according
to the Bureau of Labor Statistics. Adjusted for inflation, their wages fell 5 percent over a
decade. Sheppard has earned the same state-set rate since she started in 2006, and inflation
means her real wage has dropped 14 percent. Vermont will give some PCAs a raise this month,
to $11 an hour.   That’s in the lower-wage category of most of the jobs produced in the labor
market recovery after the 2007-2009 recession, according to a study by the National
Employment Law Project in New York, which receives funding from foundations and unions. The
study found that 58 percent of those created from 2010 to 2012 paid $13.83 an hour or less.

Two years after the recession was over, 32 percent of working families didn’t earn enough
to cover basic necessities, up from 28 percent in 2007, according to a report by The Working
Poor Families Project, a nonprofit that analyzed 2011 U.S. Census data. In the home care
sector, workers make so little that 50 percent depend on some form of government
assistance, according to Dorie Seavey, the Paraprofessional Healthcare Institute’s policy
research director.   Sheppard’s four-member family receives help with utility bills and gasoline
from Addison County social services agencies and qualifies for the U.S. Department of
Agriculture’s Women, Infants and Children program, which sends a shipment of milk and cheese
twice a month because of 4-month-old Gabriel.

Last year, before her partner, Greg Sands, found a full-time job, they managed on the
$14,790 she made and qualified for food stamps. Now Sands, 29, earns $12.30 an hour at
the Goodwill Industries store in Williston, Vt., 42 miles away. This year, the family could cross
the federal poverty guideline of $23,550 that is used to determine eligibility for assistance.
Sheppard won’t be turned away by the food bank; its doors are open to households whose
gross income is less than 185 percent of the U.S. poverty level.

Still, the budget is tight for Sheppard and Sands. There is $199 in a fund for winter tires that
will cost $500, and they owe the electric company $500. The 8-year-old, Kaleb, Sheppard’s
son from a previous relationship, is allowed to pick one sport, which this fall was soccer. “He’s
a fish; he loves to swim,” his mother says, but they can’t swing the $30 monthly pool fee.

The day starts when Sheppard packs Gabriel into the back seat of her Subaru, with 218,000
miles on it, at their rental off a dirt road in Bridport, bordering the college town of Middlebury,
beneath the dark silhouettes of the Green Mountains. They can’t afford day care, so where
she goes, the baby goes.

She can cover 200 miles on a busy day. Twice a week, she drives to Weybridge, Vt., to Judy
Trudeau’s house. Trudeau, 54, has emphysema and chronic bronchitis, and answers the door
in her black wheelchair. She reaches out. “My sweet pea!”

Sheppard supplements the round-the-clock care provided by Trudeau’s daughter, Eva. She
does light housekeeping, washes Trudeau’s hair and holds her hand. For a year, Sheppard says,
she came several times a week even though Trudeau’s Medicaid benefits covered only about two
of those months. Starting two weeks ago, she says, Medicaid began paying for PCA care for at
least six hours weekly. “It’s only going to get worse for me, not better,” Trudeau says, and she
wants Sheppard to be there.

Sheppard often isn’t compensated for the work she does, usually because funding for her mostly
low-income clients has fallen through. More than half of direct-care workers in Vermont are paid
by Medicaid, the joint state and federal insurance program for the poor and disabled. The rest
are paid out of pocket by clients or by Medicare or long-term-care insurance.

So there’s no telling what she’ll earn month to month, and the uncertainty creates tension at
home. Sands says that while he fell in love with Sheppard because of her compassion, there
are times “I can’t handle it.”

“I’m full time 40 hours a week,” he says. “I know what’s going to happen with my paycheck, and
we never know what’s going to happen with hers.”

It’s a frequent topic.

“He doesn’t understand why I just don’t get a job like his,” she says.

She concedes that regular hours and steadier pay would provide her family with more financially.
But she says she learned when she was younger — as a farm laborer, a car salesperson, a clerk
at an ice cream stand and the manager of a sporting goods store — that she wasn’t cut out for
a conventional job.

“I’ve done the 9 to 5, and I’ve come home miserable,” she says. “If the momma ain’t happy,
nobody’s happy.”

Sheppard traces her desire to help others to when she was 19 and a former boyfriend
committed suicide. She says she is haunted still by the regret that she didn’t do more for him.
“That’s why I find it hard to walk away from people.”

Her longest-running client is Avery Ecklein, 19, who is deaf and doesn’t speak. He also has
Asperger’s syndrome, a form of autism. The two met when he was 7 and she was giving
horseback-riding lessons to people with emotional and physical disabilities.

In 2006, she became Ecklein’s personal care aide. His mother, Ingrid, manages the time
and money, submitting invoices to the state, which mails out checks. If she’s late with the
paperwork, which she acknowledges she sometimes is, Sheppard’s pay is late too.

A PCA’s job is to assist the elderly or disabled with “daily living activities,” according to the
Vermont Labor Department website. Sheppard says she thinks her most important duty is
helping him overcome what she calls his “social barriers.”

He’s shy and can be impulsive. At times, he has locked himself in her car, refusing to open the
door. She carries an extra shirt in case his gets wet, because he’s furious if he spills a drink on himself.

They work on sudoku puzzles, read books or watch his favorite movies, including “Avatar.” She
takes him swimming and to the park, inviting her cousins and friends for games of soccer or
volleyball.

Sheppard spends 21 hours with him during this weekend, and in the middle of it, Ecklein’s
mother reveals that her son’s Medicaid benefits have expired   — she neglected to complete
paperwork for the annual renewal.

Now the forms are being processed, and the women are drawing up a schedule. Those 21
hours go unpaid, though Ingrid gives her cash for meals and gasoline.

“I can’t be angry,” Sheppard says. “I have to remember to have patience. That’s a huge part of
being a care provider right there: patience.”

This summer, Sheppard made extra money as a speaker and organizer for the American
Federation of State, County and Municipal Employees, which is forming a union for independent
home-care providers in Vermont. Her peers elected her to the 20-member bargaining committee,
and she’d like to be its president.

“Since I’d be pushing for a livable wage for members, I wouldn’t take anything less than $15 an
hour,” she says.

She’d be happy to shop more at Wal-Mart and never at the food bank, which is run by a county
agency called Helping Overcome Poverty’s Effects, or HOPE. She goes twice a month, the
maximum allowed. On a recent visit, the receptionist hands her a clothing voucher to use at
HOPE’s thrift shop next door: $25 for each son and $30 for her.

Pulling onesies and print pajamas from the racks for Gabriel, she points to the shelf where she
found worn soccer shinguards for Kaleb. He was embarrassed that they didn’t have heel straps
until his coach said socks would hold them up just fine.

Then she takes a moment for herself, heading to the women’s department for dress slacks, coming
up empty. “I won’t spend it all today,” she says of the $80 voucher. “We need so much.”

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@www.thearcofil.org