A thousand cuts

Adell Williams says she is not “severely handicapped.” On a good day she can move around her house with the use of a cane or a walker and she can drive herself around town. But those days are few and far between. Williams has degenerative disk disease, or osteoarthritis, in her spine. On top of that, she has three herniated spinal disks and neuropathy as a result of the disk damage, along with fibromyalgia. Most days she has trouble walking, and she wears three different braces on her arms, knees and back. “Sometimes it’s painful enough to be crippling and keep me in bed,” she says.

The 56-year-old has been receiving In-Home Supportive Services (IHSS) care since 1996. IHSS is a program that helps pay for in-home-care services for the elderly and disabled as a less expensive alternative to nursing-home care. IHSS enables its clients to continue living independently.

Despite relying on the program for the last 13 years, Williams is one of thousands of people in the state who may lose some or all of their IHSS benefits as a result of Gov. Arnold Schwarzenegger’s cuts in the program to narrow the state’s budget deficit. “Why take from the people who are struggling to exist?” Williams asked in a telephone interview. “It’s a shame.”

No one knows yet exactly who will be losing benefits, or to what extent, said Evan LeVang, director of Independent Living Services of Northern California. All people know is that it will be happening soon, or by Oct. 1.

“People are just going to get a letter in the mail saying they will lose these services,” he said. Currently IHSS offers assistance with such activities of daily living as housecleaning, meal preparation, personal-care services (such as bowel and bladder care, bathing, grooming and paramedical services), laundry, grocery shopping, accompaniment to medical appointments and protective supervision for the mentally impaired.

LeVang says these services are often what allow an individual to live independently at home rather than in a nursing home. There are 430,000 recipients of IHSS in the state, with roughly 2,500 in Butte County alone. The governor has proposed $211 million in cuts.

Many IHSS providers are caring for a member or members of their own family. They’re paid for their work under the assumption that they could be making a living elsewhere but have chosen to care for their loved ones instead.

The IHSS program cuts will be based on something called the functional index level of each patient. It’s a “magic number,” as LeVang put it, ranging from one to five that determines a client’s level of need, with five representing the most extreme level. LeVang says his greatest concern is that this number is entirely subjective and was originally intended to be used only for statistical purposes, but now it’s become “vital to their survival.

“If your number is too low, you will lose all kinds of services,” he continued.

Karen Ely, assistant director for Butte County’s Adult and Children’s Services divisions, said the governor wants to eliminate domestic and related services—such as housekeeping, shopping and food preparation—for individuals with a functional index level under four.

It gets worse: “If you have a functional index of less than two, you are not eligible for IHSS services,” she continued.

These new criteria, which are included in the budget revisions passed and signed by Gov. Schwarzenegger in late July, will save the state an estimated $53.2 million. The governor complicated the situation when, at the budget signing, he line-item vetoed another $29.8 million in funding. He’s asserted that certain IHSS recipients shouldn’t be exempted from the more restrictive eligibility requirements for domestic and related services.

In addition, the July budget revisions eliminate the state subsidy for IHSS recipients who are required to pay a share of cost for services, effective Oct. 1 (savings: $41 million) and, in an effort to eliminate fraud, require recipients and providers to be fingerprinted.

Ely said she can’t predict the impact these cuts will have on the program or on specific cases, but she agreed that the functional index level is subjectively based on a whole series of criteria, including a doctor’s evaluation. Even individuals with low numbers need the service at some level or they wouldn’t have qualified, she said.

“I think we are all in an agreement that these cuts are going to affect a vulnerable population in our society,” she added.

LeVang is convinced the long-term effect of the cuts will be staggering, because many individuals who lose benefits will end up in nursing homes, which cost five times more than it takes to keep them living at home.

“I don’t see that cooking your meals or cleaning your kitchen is an extra luxury,” he said.

People affected by the cuts have the right to appeal when they are notified, LeVang said, predicting that county offices will be overwhelmed with appeals.

Not to mention that cutting provider hours means more people are going to need to find other employment either to replace lost hours or cover the additional costs needed to care for family members who are part of the program.

“The more I think about it the sadder I get. … The more I hear about it I get upset,” said Marilyn Friedman, an IHSS provider for her two disabled children. “It’s unbelievable.”

Friedman’s older son, Michael, 17, has a mild mental disability and a fine-motor-skills disability that prevent him from accomplishing tasks such as tying his shoes. He also has obsessive-compulsive disorder, speech problems, a learning disability and type 2 diabetes. Timothy, 11, has been diagnosed with a learning disability, obsessive-compulsive disorder and attention-deficit hyperactivity disorder and is bipolar.

Each day is different for the Friedman family. Timothy may have a polar outburst during which he hits, kicks and screams, and Michael may need assistance shaving and dressing. Michael will never be able to live on his own, and Friedman can’t work because she is needed at home. Her children currently qualify for 93.4 hours of IHSS care a month, or about $760 worth. Michael turns 18 in October and would qualify for additional domestic services if the program were intact.

“If they get their hours cut, it’s going to be devastating for my family,” Friedman said, adding that the family already relies on two incomes in the struggling economy.

Another provider, Golden Sizemore, who takes care of her elderly mother, who is deaf and has heart and kidney problems, was able to take her mother out of a nursing home because of her IHSS hours. Since then, her mother’s condition has improved because she had more one-on-one care. Sizemore is already feeling the financial pinch required to take care of her mother, and she also has a full-time job.

As for Adell Williams, she says she will be able to manage. But it will be hard, especially when she can’t drive to the grocery store or to her doctor’s appointments. She doesn’t have much family nearby, except her 87-year-old mother, who is also a recipient of IHSS services because she has “crippling arthritis and can’t dress herself.”

“It’s going to be a domino effect, a rippling effect not only on the indigent population, but for those who provide care for them,” Sizemore said. “Some folks are going to be left on their own. It’s really disheartening to see these cuts taking place.”