In-home help threatened with budget cuts

Linda Mohrbacher lies in bed in the living room of her central Richmond home on a rainy Sunday morning.

“Is it raining? It’s usually worse when it’s raining,” she says, referring to her chronic pain. “I’m not doing too well this morning.”

Mohrbacher’s caretaker, Modesta Rangel, has been at the house for an hour. When she arrived, the first thing she did was to shift Mohrbacher, who’d been in the same position, unable to move, since her other caretaker left the night before.

Paralyzed from the middle of the spine down by a rare disease called HTLV-1-associated myelopathy, Mohrbacher uses a wheelchair and has limited strength in her upper body. Her two caretakers do the domestic work she can’t: cleaning, laundry, grocery shopping and cooking. They also help her bathe, do physical therapy exercises and get in and out of her wheelchair.

The caretakers who assist Mohrbacher are paid by In-Home Supportive Services (IHSS), a government program designed to keep low-income people with disabilities in their homes and out of nursing homes.

For many low-income people with disabilities, the program is a lifeline. But it’s been on the chopping block for years, continually threatened with major budget cuts.

Last month, the California legislature cut IHSS worker hours by 3.6 percent as part of an effort to close the budget gap. The cut will go into effect in February.

“I think there’s an element of scapegoating of people with IHSS,” Mohrbacher said. Losing some of the services she relies on, she added, will be a hardship not only for her but for her caregivers, who will lose income.

Help from caretakers like Modesta Rangel lets people with disabilities live independently. Nursing home care costs five times more, on average.

IHSS is paid for by Medi-Cal and funded by money from federal, state and county governments. Workers make $11.50 per hour in Contra Costa County, and most are part-time. For Mohrbacher’s providers, IHSS is their only job.

The cutbacks amount to about 22,500 hours in Contra Costa County, according to John Cottrell, who oversees the county’s IHSS program. In Contra Costa County, some 8,000 people use IHSS services, he said. There are about 7,000 IHSS workers in the county.

Last year, the California budget included much more drastic cuts to IHSS that would have essentially gutted it. Those cuts never went into effect, blocked by a federal court injunction. A decision from the court is pending, but will not go into effect until 2012 at the earliest.

Last January, Governor Schwarzenegger’s proposed budget called for a fifty percent cut to the program. After a prolonged battle, legislators settled on the temporary 3.6 percent cut, allowing the program’s supporters to breathe a sigh of relief.

“We feel that the legislature really acted to preserve the integrity of the program and allow people to live in their homes and receive these services,” said Rebecca Malberg. She’s a spokeswoman for the Service Employees International Union-United Healthcare Workers, which represents IHSS workers in Contra Costa County.

But the reprieve might be only temporary. Depending on the outcome of the court decision, IHSS may be severely restricted in the next fiscal year. This year’s 3.6 percent cut will end at the end of the fiscal year in June, but with every budgeting cycle a battle to reduce costs, many IHSS supporters worry that the program will be subject to even larger cuts.

Malberg said many IHSS providers care for family members with disabilities and the cutback will make it harder for families to make ends meet.

For people whose caretakers are not relatives—like Linda Mohrbacher—Malberg said she anticipates that the caregivers will continue to do the same work for less pay.

“They’re solely responsible for someone’s ability to live independently,” she said. “It’s not as if the clock rings and someone is eating and you just leave. Lots of times our workers stay on longer because the work isn’t finished, and this will make that more acute.”

Although there’s no cure for Mohrbacher’s illness, a regimen of medication and exercise helps to slow the progression of her disease.

Lauren Steinberg, an organizer with the Center for Independent Living, a Berkeley nonprofit, is less optimistic. She worries that people who receive only a few hours of support each month will not be able to find a worker because the cost of going to the client’s house will be prohibitive.

While Steinberg was braced for far worse cuts than this year’s 3.6 percent, she said that any cut to the program is a move in the wrong direction.

“The population itself is growing,” she said. “People are aging. If you have a degenerative disability as time goes on you’ll need more support.”

Mohrbacher’s disease is progressive, and she says that while her illness has been worsening over the past two years, the number of IHSS hours she qualifies for has not increased.

On a good week, she goes to the pool twice a week with her caregivers, where she says being able to move in the water helps slow the wasting of her muscles. When the 3.6 percent cut takes effect in January, she will probably have to reduce her the amount of exercise she gets.

“With these cutbacks if there’s one thing to go it’s probably going to be one of the trips to the pool during the week,” she says.

Without the program, Mohrbacher said she could not live independently.

“If it weren’t for IHSS, I would have to live in a nursing care facility,” she says, “[My caregivers] make my life possible.”

There’s good reason to keep people independent, according to Lauren Steinberg: Nursing homes cost the state five times more per person than in-home care.

Steinberg also said that IHSS is safer. “In nursing homes, there’s no choice about staff,” she said, “and that really sets people up for abuse.”

John Cottrell said the county plans to supplement IHSS services with a cadre of highly trained volunteers who can take over some of the domestic duties of IHSS caretakers

“We won’t just forget about those who drop off,” he said. “We’re going to serve them in a different way.”

At this point, Cottrell’s volunteer-run program is in the planning stages. He anticipates a pilot version will get under way some time next year.

Until then, people like Linda Mohrbacher will have to make do with a little bit less.