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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.”

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.”

She pauses, and swallows audibly. “I don’t see him having a long life in that environment.”

 

Officials in the Schwarzenegger administration argue that the California budget deficit, currently around $12 billion, makes
the cuts unavoidable. When the governor presented his budget plan, he also noted that since fiscal year 1998-99, costs have risen 140 percent while the caseload has increased only 52 percent.

But again, critics say the governor’s numbers don’t tell the whole story. Freeman, the home-care workers’ union local president, says that the growth reflects pay raises long overdue.

“They had people working for slave wages,” Freeman says, noting that until the mid-1990s, some home-care workers were paid as little as $3 per hour.

Administration officials also point to an audit performed by Donna Arduin, director of the California Department of Finance, to support their case. Arduin concluded that up to 25 percent of IHSS services might be unnecessary or not actually provided. The allegation has raised eyebrows in some quarters.

“It’s our understanding that that audit was incredibly flawed,” says Ron Osterhout, director of the IHSS public authority in Los Angeles County. Critics say that Arduin only studied a small group of problem cases to reach the 25 percent figure. Phone calls to Arduin’s office were not returned.

The wild card in the wage equation is how the counties would respond to the reduction in state funding.

“[The cut] doesn’t preclude the counties from contracting through collective bargaining for higher wages,” says Belshe. “It’s going to be up to each of the counties.”

Schwarzenegger’s proposal, however, could make the counties’ decision for them. It calls for diverting about $1.3 billion in property tax proceeds away from the counties to make up for cuts in state school funding.

What’s more, IHSS actually benefits the states’ bottom line much more than it does the counties’, according to Phil Ansell, an assistant director for the Los Angeles County Department of Public Social Services.

“The problem with IHSS from the county’s perspective is that nursing home costs, which are avoided by IHSS, are completely borne by the state and the federal governments,” Ansell explains.

The result is that counties with less money would have little incentive to make up for the state reductions on their own.

 

The debate over IHSS comes as the number of Californians eligible for the program is beginning to explode. Increases in life expectancy and advances in medical technology mean that people are staying healthy enough to be cared for in their homes longer. Those factors, however, are minor compared to the 800-pound gorilla that is looming over social services nationwide: the baby boomers.

“This is going to pale by comparison to the mess we’ll have in 15 years,” warns Osterhout. “This is the tip of the iceberg.”

Advocates for the disabled are scrambling to organize opposition to the cuts. The California Disability Community Action Network is planning rallies at the state Capitol next week to coincide with the legislative hearings. Network director Marty Omoto says he expects thousands to attend.

“What these cuts are is really a political decision targeting groups with the least political muscle,” Omoto says. “We’re trying to change that dynamic by organizing in a way that hasn’t been done before.”

 

To forecast the eventual outcome of the debate, it could be instructive to consider the events of 1992, when the Wilson administration proposed a 20 percent cut to the program. After stiff resistance only a 12 percent cut was approved. Further opposition led to full funding being restored seven months later.

If the current debate over Schwarzenegger’s proposed 35 percent cut ends in a similar way, Belshe says other programs will have to come under the knife.

“There has to be a reasonable and responsible middle ground,” says Belshe. “The one thing we do know is that the status quo is not an option.”

Try telling that to Nancy Becker-Kennedy. “[The program] is so obviously a humane, effective thing,” she says. “Disabled people have clawed their way out of institutions. I don’t know if we’re so marginal that forcing us back in will go unnoticed.”

In a voice more wistful than hopeful, she adds, “I hope not.”

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