In-Home Caregivers Do Emotionally Intense Work In A Complicated Environment

Feb 25, 2016

Wesley Lemner is cared for by his father Arthur and mother Margo at their home in Chico. Wesley is a 27-year-old recipient of in-home supportive services.
Credit Marc Albert

Going out for the day takes a little extra time for 27-year-old Wesley Lemner. Complications at delivery left him with permanent brain damage.

In a back bedroom, Wesley’s mom, Margo, adjusts his cap as he gets ready for a trip outside.

As he heads for the door, Wes half brushes, half slaps his hair and head repeatedly.

Wesley is among about 450,000 recipients of In-Home Supportive Services, a joint federal, state and county program offering direct assistance to the disabled, the elderly and the infirm. Caregivers might help a recipient clean up after using the restroom, get dressed, prepare meals, run errands or change out oxygen tanks. Periodically evolving since its first iteration in the 1950s, IHSS is geared toward maintaining the independence of those needing help.

Caregivers aren’t well-paid. They receive anywhere from $10 an hour to just over $12, depending on which county they work.

Arthur Lemner, Wesley’s father and main caregiver, said making ends meet is nearly impossible.

“Minimum wage has not been the greatest,” he said. “I mean it provides us, it pays the taxes it keeps the cars running. It takes care of all the bills, that’s about it.”

An engineer by training, Arthur and his wife put their own lives on hold once they understood the severity of Wesley’s injuries. The cost of care outstripped whatever money they could cobble together.

“I couldn’t make enough money per hour,” he said. “All the jobs I was being offered were either out of state, down south, or such a low wage in this area that I couldn’t afford to hire somebody.”

A devoted father, he said he couldn’t imagine the alternative — putting Wesley in a nursing home. Rather than hopes and dreams, the future presents deep seated fears.

“We’re really afraid of that. I mean, we’ve got to die, it’s got to happen and we got to leave him in care of the world. And some of these individuals they’re cared for, they’re not cared for, and they don’t get the best of care,” he said.

Recessionary cuts put additional financial pressure on the roughly 376,000 caregivers employed by the program. Nearly eight years after the Wall Street meltdown, funding is slowly coming back. A reformulated health insurance tax, currently under debate in Sacramento, could restore $250 million annually to IHSS.

As a large and growing social program in a state with a boom and bust economy, the program is often affected by budgets see-sawing from bounty to near bankruptcy. H.D. Palmer, a spokesman for the state Department of Finance, said that in the near and medium term, the program will get more expensive.

“The baby boom cohort is moving through the cycle,” he said. “There are roughly 1,000 people in California who turn 65 every single day, and we project that by the middle of the next decade that will increase to about fourteen hundred people a day.”

There’s a near constant struggle to raise wages. But those efforts repeatedly run into limited revenue, growing caseloads and a reluctance to raise taxes.   

Kim Evon, an organizer with the Service Employees International Union, who has been battling for higher wages, said many caregivers qualify for public assistance themselves.

“There’s a sense of shame for some caregivers who work every day, taking care of the most vulnerable population and they’re ashamed that they have to be on CalFresh, they’re ashamed that they can’t afford to live on their own,” she said.

On balance, the program saves money for taxpayers. Putting someone with as many needs as Wesley Lemner in a nursing home is far more than twice as expensive as providing the support needed to remain at home. Advocates, recipients and program administrators all point to the intangible advantage of maintaining independence.    

Not everyone receiving aid through the program is as severely injured. Many are among the elderly, who might only need help keeping their homes tidy, changing lightbulbs or picking up prescriptions. Some recipients may need more help over time; others, like Willows resident Rachel Glass, hope to need less.

Glass survived two near-fatal car accidents in 2013, a month apart. Her mother and caregiver, Lisa Hill, said Glass should have died.

“They kept saying ‘Wow, we can’t believe that you’re alive.’ I kept thinking: ‘it’s your heard head,’” she said, bursting into a laugh.

At first, Hill, who has some nursing experience, did just about everything for her. Recovery has been incremental. Glass’s limbs remain weak. She’s unsteady on her feet and can’t carry much. That means help for even mundane tasks.

Though she proudly eschewed public assistance in the past, the reality of her daughter’s injuries led her to enroll in IHSS.

“After we got that first check, we all celebrated. We were all like, ‘Yeah, Yeah!’ And I’m thinking this is great — food,” she said, nearly shouting through laughter.

Back at the Lemners’ home, another caregiver is taking Wesley outside for part of the afternoon. He’ll get some exercise and fresh air, while Arthur and Margo straighten up and take care of errands they can’t do when Wes is around.