Demands of Independence

Nor, presumably, would most recipients, a group that already inhabits the lowest rungs of California’s economic ladder. To qualify for the program, a disabled Californian can have no more than $1,000 per month in total income and no more than $2,000 in personal assets, including any savings. Many recipients worry that the proposal is further evidence that society prefers to ignore the poor and disabled.

“This is a constituency that nobody cares about,” says Becker-Kennedy. “Nobody worries that, ‘Oh, a disabled person’s mad at me.’”

The proposed cuts would also cost the state jobs, an issue often cited by the governor as one of his chief concerns. The program employs roughly 300,000 care providers through county agencies, 105,000 of them in Los Angeles County. While it’s hard to determine exactly how many care providers would lose their jobs, the 18 percent reduction in available work would be equivalent to 19,000 fewer jobs in Los Angeles County alone.

Even the remaining work would likely be at sharply reduced wages. The state’s funding for care-provider wages would be slashed under the governor’s proposal. Currently California pays 65 percent of the wages up to $10.10 per hour, including the cost of any benefits. The Schwarzenegger administration wants to roll that back to the minimum wage of $6.75. Budget figures indicate the measure would save the state $98 million next fiscal year and even more in later years.

Tyrone Freeman, president of Service Employees International Union Local 434b, the union that represents most home-care workers in Los Angeles County, says those savings may be illusory. The union estimates that even at current wage levels, 85 percent of home-care workers already fall below the poverty threshold.

“When you cut these individuals who live below the poverty line, it’s just hypocritical,” he says. “They don’t qualify for food stamps, they don’t qualify for health care. Now they have to go into social dependency. There’s a huge cost of social services, because now people who were providing services are now in a position of receiving them.”

In Los Angeles County, home-care providers currently make $7.25 an hour, and some are eligible for medical benefits. Mary Martz says that isn’t enough, not when nurses who provide home care to wealthy clients can charge $30 an hour or more. Her two siblings, both with financial difficulties of their own, can offer little assistance.

Martz receives advance pay through the residual program because of the high turnover rate of attendants, a problem often cited by the most severely disabled recipients. She says having money to pay attendants on the spot is the only way she can attract replacements on short notice. Even with that advantage, however, she says the low wages severely limit her choices.

“How are you going to hire someone good?” she asks. “I have to hire convicted felons, with drug convictions. These people are in my home, with access to my medications, all my personal information, everything.”

Martz says that past attendants have helped themselves to her possessions, despite the fact that she uses what little money she makes from occasional consulting jobs to augment their wages. This practice forced her into bankruptcy last year. Occasionally an attendant will fail to show up for a shift, leaving her alone, unable to move, to eat, to go to the bathroom. She can only cry for help.

“It’s pretty scary,” she says.

In 1999 a law requiring counties to act as “employers of record” for IHSS care providers led most counties to create IHSS public authorities. With a single employer, workers could unionize and negotiate better pay and benefits. Program administrators and recipients say the public authorities have led to real strides in improving the work force, helping make stories like Martz’s less common.

The governor’s budget, however, would do away with the employer of record requirement and end state funding for the public authorities, sparking fears that the hard-won gains could all be undone.

The disturbing reality of the debate is that many recipients can’t plead their own case. This is especially true of the 3,200 people in Los Angeles County who receive protective supervision, part of the program slated for elimination. Most of them are victims of Alzheimer’s disease or other mental illnesses. Often relatively simple in-home care allows them to live safely in the community, avoiding costly institutionalization.

“The [home-care worker] that comes in to, say, make a meal for them is someone who is keeping that person healthy, is a person who’s prompting them, asking, ‘Did you take your meds?’” says Donna Calame, director of the IHSS public authority in ‰ San Francisco. “If their apartment becomes cluttered, becomes dirty, they may be evicted, so this service is keeping them from becoming another one of those ‘dastardly unsightly homeless people.’”

Depending on the recipient’s type of disability, an attendant may have to take care of bowel and bladder functions, bedsores, seizures, or even self-destructive or violent behavior. Often only a responsible relative is willing to shoulder the burden, but under the proposed budget they would no longer be paid.

Kathryn Simpson of San Francisco, a former nurse who is paid by IHSS to care for her severely disabled son, Sam, says finding a qualified outside provider for fast-food pay would be nearly impossible. She fears that if she can no longer earn a living caring for Sam, he could wind up in a nursing home. “[In a nursing home] they’re not going to have the love that I do,” she says. “In that environment there are a lot of infectious diseases, too.”