In the shadows: Californians need to take better care of long-term disabled. And the people who take care of them.

As Californians get older, lawmaker deals compromise health care for the elderly and disabled—and screw over workers

Cosmo Garvin did more reporting on caregiving for Capital Public Radio as part of a documentary called Who Cares. If you haven't checked CPR's View From Here series on public health, do so at

Late last year, the Obama administration decreed that overtime protections should be extended to home-care workers, the people who do the critical work of tending to the elderly and disabled.

But California Gov. Jerry Brown said the state’s In-Home Supportive Services Program—which provides money for low-income residents to hire their own caregivers—couldn’t afford to pay overtime. Brown decided to prohibit IHSS workers from working more than 40 hours a week. The policy was unrealistic, of course: Caring for someone with advanced Alzheimer’s disease or severe disabilities is no 9-to-5 gig.

Brown eventually cut a deal with labor groups and the Democratic Legislature—agreeing to overtime with some strict caps. And, as it stands now, some home-care workers could actually lose income under the new overtime rules. The deal will also cut the total number of hours of care available to each IHSS recipient by about 7 percent.

The IHSS fight is one example of the difficult choices facing California as the population ages and increasingly strains the system of long-term health care for the elderly and disabled.

IHSS providers do it all, cooking, cleaning, bathing and personal care, even medical care. The program helps people stay in their homes instead of institutions. And it also allows family members to receive some income for providing care, which can be good for the care recipient and can help make up for the hours and employment opportunities that family members often give up to become caregivers. California was the first state in the country to adopt this model and has since been emulated in other states.

Loretta Jackson is one of California’s IHSS family caregivers. She spends much of her day caring for her 71-year-old dad, who has dementia, and her sister, who had a stroke back in 1999 and is partially paralyzed and speech impaired. Both live with her and her husband and children.

In Sacramento County, IHSS pays her about $11 an hour for the care she provides. But since the state now caps her hours at 66 per week, “We’re going to lose about half our income,” Jackson explained.

The family could bring another caregiver into the house to round out the rest of the hours her dad and sister qualify for, but her dad’s dementia means he can get extremely agitated, even violent at times, and Jackson doesn’t trust him with strangers. And much of the income that Jackson gets paid goes back into paying for food and shelter and clothing and medical care for her sister and dad.

Jackson fought alongside the SEIU-United Healthcare Workers West for overtime pay. She met with legislators and gave passionate testimony at state budget hearings. “I thought we won. But we didn’t,” she says now.

Ben Tracey, an organizer with SEIU-UHW, says about 20 percent of the state’s 350,000 IHSS workers will do better under the new rules. The large majority won’t be affected. Then, about 2,500 or so will actually be hurt by the rules as they stand now. But Tracey also says there’s a fix in the works to keep that group of people like Jackson from losing out. But the deal isn’t done yet. “Until they see it in writing, people are understandably upset and fearful,” Tracey says.

Meanwhile, the 7 percent cut in hours will affect all IHSS clients. And it will hurt the often poor, predominantly female workforce that cares for them, says Geoff Hoffman, with the UCLA Fielding School of Public Health. He says these people, family caregivers and nonfamily home-care workers, constitute a “shadow workforce”—underpaid, unseen, doing health-care work that would be tremendously expensive in an institutional setting. “Women in particular are really getting hosed in this shadow workforce,” says Hoffman.

His research shows that about a third of home-care workers are “food insecure,” a third are themselves uninsured. Family caregivers in general are more likely to be stressed out and to neglect their own health.

While Hoffman too sees the overtime rules as a win—“it’s recognition that this work clearly is work”—he worries about the other cuts, and the low pay, high-stress jobs that caregivers do. “This is not making widgets, where you can just switch one person for another. It’s about trust.”

“I think the governor’s guys are thinking, ’Well, we’ll cut a few hours, no big deal.’” But that misses the bigger picture, says Hoffman. California has a huge baby boomer population, all entering retirement age. Without better policies, the burden on the shadow workforce—underpaid, overworked and vulnerable—will grow heavier.

“We need to take care of the long-term disabled, and we need to take care of the people who are taking care of them. Right now, the system isn’t really working for either of them.”