Demands of Independence

Photo by Ryan Donahue

In 1953, polio left 5-year-old Mary Martz paralyzed from the neck down. Life with her disability has brought a mix of successes and setbacks. She earned a doctorate in education and lives on her own in a Claremont apartment. But in the last year, she has gone through bankruptcy and battled life-threatening pneumonia.

Now Martz is worried that yet another setback may be ahead, but this time more than money or even health is at stake: Her independence is threatened.

Martz has been able to stay at home through In-Home Supportive Services (IHSS), a California program that helps 305,000 low-income people with disabilities pay for in-home care. Governor Arnold Schwarzenegger wants to slash funding by 35 percent, and completely eliminate benefits to Martz and more than 75,000 poor and disabled Californians.

“It would be the first step in an erosion of our ability to control our own lives,” Martz says. Without her benefits, Martz says she would likely be forced into a nursing home, a prospect that she calls “a living death.”

The program is threatened by Schwarzenegger’s plan to trim California’s massive budget deficit. His $15 billion bond issue, approved by voters in March, will mostly go to paying off short-term debt, while the long-term budget fix calls for more than $7 billion in proposed program cuts and funding shifts. The administration want to squeeze more than $500 million of that from IHSS; defenders of the program say the cuts would target California’s most vulnerable citizens and eliminate thousands of jobs.

“It’s catastrophic,” says program recipient Nancy Becker-Kennedy. “They call it ‘belt-tightening,’ but it’s tightening a belt around someone’s neck.”

Becker-Kennedy has been a quadriplegic since a diving accident when she was 20 years old. “If it weren’t for IHSS, I’d be dead right now,” the 52-year-old woman says. “With it I have lived a full life and — I don’t want to boast, but I have contributed a lot to the community. Without it, I go to a nursing home, and I’m kept there like a political prisoner. And the cherry on top is that the taxpayers get to pay five times as much to ruin my life.”

Martz and Becker-Kennedy are among a growing number of voices questioning whether the cuts would generate any savings at all. Even at the highest wage rate, the average IHSS case costs the state $530 a month. The state Medi-Cal payment for an individual in a typical home in Los Angeles County is about $3,200 per month — nearly six times as much. The governor’s proposal does not call for an increase in nursing home payments.

“I think it’s a penny wise and a pound foolish,” says Pat McGinniss of California Advocates for Nursing Home Reform. McGinniss also questions the ability of California’s nursing home system to absorb an influx of Medi-Cal cases. “First of all, people shouldn’t be forced into nursing homes,” she says. “Second, if they are, I’m not sure where they’re going to go.”

Nursing homes already have an 87 percent occupancy rate. What’s more, many of the available beds are in private nursing homes that shy away from Medi-Cal patients, an illegal practice that McGinniss says is widespread.

Additional nursing home costs to the state are only one part of the proposal’s possible ripple effect. Experts say that some of those losing IHSS benefits would be forced to turn to programs such as Department of Developmental Services Regional Centers, Area Agencies on Aging and Adult Day Health Centers, as well as hospital emergency and inpatient services. Many of those programs are also targeted for cuts, or enrollment caps, by the administration.

The state Legislature will hold hearings on the proposed cuts next week, beginning a process that will decide the fate of Martz, Becker-Kennedy and more than 300,000 other disabled and impoverished Californians.

The chief IHSS program on the chopping block is the so-called residual program, which accounts for about 20 percent
of the department’s cases. Some 75,000 recipients, 21,000 of them in Los Angeles County, are at risk of losing their in-home care. The program gets no federal funding; the state pays 65 percent and the counties pay the rest.

Kimberly Belshe, California secretary of health and human services, says the state cannot sustain the cost of paying for residual cases without federal help. The federal government covers half of the cost of most IHSS cases through the Personal Care Services Program (PCSP). “I think the message is that many of the individuals served through the residual program would be eligible to move into the PCSP,” Belshe says. “These proposals are a reflection of the desire to maximize enrollment in the federally funded program.”

The administration’s own numbers seem to suggest otherwise. According to the California Legislative Analyst’s Office, the governor’s proposal assumes that only 24 percent of residual recipients could move to the PCSP, leaving nearly 56,000 disabled Californians without any home-care assistance at all.

When asked in an interview last month about the administration’s 24 percent assumption, Belshe seemed taken aback. “That’s something that I would have to check with the Department of Social Services finance people,” Belshe said. “I’m not prepared to accept that.”