California’s caregiver wage cut ‘cruel,’ says disabled ex-teacher
Sylvia Zedlar's left leg was nearly severed when a car struck her in south Sacramento County in 2002.
The 74-year-old has been struggling to recover ever since, using a wheelchair that she scoots with her feet and holding onto walls – and her caregiver – to gingerly walk.
Now the former teacher has problems she fears will threaten her survival.
Because state budget cuts reduced in-home care subsidies for those deemed able to pay, she is among about 9,000 frail and mostly elderly Californians who must pay, on average, between $200 and $250 more each month to get the same level of care.
Zedlar, for example, was told last month that she now must spend $840 of her $1,495 monthly Social Security check to get state-subsidized in-home care, leaving little more than $600 – what she spends on rent alone.
"How cruel is this?" Zedlar said. "I started working at 16."
"We paid to have these (elder care) services now. We made a contribution. We didn't just take."
In mid-September, state social services officials sent one-page notices to those affected, saying that as of Oct. 1 the state no longer would help pay caregiver wages if the recipient didn't pay a much higher minimum first. The caregivers are hired through the In-Home Supportive Services program, which is 50 percent federally funded.
Since 2004, the state and recipients have split a "share of cost" payment required by Medi-Cal and the in-home program.
By dropping that aid, the state now hopes to save $41 million. The cutoff is based on Social Security retirement – or other pensions – and Zedlar receives too much now.
The in-home program has been the state's fastest-growing social service program, with costs increasing by 110 percent since 2001.
Other types of cuts are planned for the program, which serves about 400,000 people as a more cost-effective way to care for people than in nursing homes.
State studies show that the average cost of in-home care is about $891 a month. That's 18 percent of the average nursing home cost of more than $161 a day, or $59,000 a year.
The slashing of share-of-cost payments is the only cut fully implemented so far. Other cuts that would drop people from care have been blocked by lawsuits.
Since mid-September, calls from people who now have to shoulder more of the cost of care – or lose it – have been pouring into disabled rights organizations.
Many are stunned that they were so abruptly cut off and confused by notices laced with bureaucratic jargon.
Marilyn Holle, senior attorney with Disabled Rights California, called the way the cuts were carried out "morally wrong."
"This is a very vulnerable group. Many are severely disabled," she said.
Holle filed suit against the state in October, alleging the state has violated the law by failing to tell disabled people in clearer language "the catastrophe that has befallen them," and explaining some alternatives they might pursue to avoid losing care.
Holle failed to obtain a temporary restraining order against the cuts but hopes for a court injunction Nov. 30 that would force the state to do what she demands.
Asked for a response to the lawsuit, state social services officials released a brief statement: "As is the case with many other reductions made in the context of the budget crisis, the state will continue to defend these necessary reductions in court."
Zedlar did not grasp that she would have to assume double the payment for her caregiver, Shirley Koukoulis, two weeks after she got her first state letter.
Before the cuts, Zedlar paid about $460 toward Koukoulis' wages and often relied on the caregiver's good graces to pay her late.
The deal that had Zedlar and the state splitting the caregiver's wages stemmed from a 2004 agreement between the state and federal governments.
In 2004, the state tried to contain some of its ballooning in-home care costs by asking the federal government to supply more money through the Medi-Cal program, which many in-home care recipients receive.
The deal, however, required that recipients submit to Medi-Cal rules requiring them to pay more out of their own pockets for services than they previously did.
To soften that blow, the state decided to pick up, or buy out, that difference.
While the overarching deal has saved the state money, the numbers of those benefiting from the arrangement has grown steadily, and was expected to jump by more than 14 percent this year to more than 11,000 people.
One reason: The state was picking up the Medi-Cal share-of-cost payment for anyone who qualified for in-home care, even if they didn't use it, creating an incentive to apply for the subsidy.
Zedlar, however, is someone who has depended heavily on in-home care to cope with her disabilities.
Koukoulis, who worked several hours a day every day, said she's now worried about Zedlar's physical and emotional health.
Disabled-rights attorneys and county welfare directors say they doubt the state will achieve its $41 million in savings with this reduction – and it could end up costing more.
"These are people who will end up in nursing homes," said Frank Mecca, executive director of the County Welfare Directors Association. "And it's not an exaggeration to say that some could end up dying before they will go in."