Teresa Lindhurst of El Cajon gets paid a whopping $45 for her full, 24-hour daily shift. She is a qualified X-ray technologist and could otherwise be earning $240 for an eight-hour shift. Instead, the single mother of three stays home to care for her 5-year-old son Trenton, the poster child for United Cerebral Palsy. She is able to keep her son at home and be paid to care for him through California's In-Home Supportive Services (IHSS) program, created by Gov. Ronald Reagan in 1973.
But Gov. Arnold Schwarzenegger's budget proposal recommends cuts to the program that would force Trenton into an institution. The Governor plans to eliminate the IHSS residual program, which allows 75,000 of California's elderly and disabled to live at home and be cared for by a minimally paid family member.
"I can't even believe it," said Lindhurst at a rally last Thursday in front of the Governor's San Diego office. "I feel like the state of California is trying to get rid of these unsightly disabled people."
Schwarzenegger also proposes to slash the already low wages of nearly 250,000 non-family home-care providers by as much as 30 percent to the state's $6.75 minimum wage.
Another proposed cut would make it more difficult for these workers to organize for better wages and benefits by changing a 1992 law that enabled the state's 58 counties to create public authorities for the workers. In 2000, Gov. Gray Davis allocated $100 million in matching funds to the county programs.
CityBeat made several attempts to contact the Governor's office for comment, but got no response.
Currently, most home-care workers in California are paid at or just above minimum wage and receive no health benefits. More than 80 percent of home-care workers live below the poverty line, according to the Quality Home Care Coalition, and turnover in the industry is high.
Roughly 300,000 seniors and people with disabilities rely on California's IHSS program, which has been heralded as a model for other states to address the country's growing long-term care crisis, advocates say. The cuts proposed by the Governor would greatly impede the program's efforts to provide people with the best quality of life possible through the comfort and independence of living at home.
In a study of this year's budget, professors Charlene Harrington and Robert Newcomer of the University of California, San Francisco reported that the proposed cuts "would be a step backward in addressing the goal of the Americans for Disability Act and the Supreme Court ruling on the Olmstead decision, which requires individuals who can live at home to be given that option as opposed to institutional care."
Advocates for IHSS argue that it not only provides the elderly and disabled with quality care, but it also saves the state money. The federal government pays for half of the $2.8 billion program and the rest is split 65-35 by the state and counties, respectively. The program cost the state $8,820 per client in 2003. However, the average cost per person for a year in a nursing home would be $43,000, paid by Medi-Cal.
The UCSF study argues that if just one of every eight of the current in-home care recipients enters a nursing home, the state would see no savings under the proposed cuts.
If the cuts are made, Teresa Lindhurst will have no choice but to send her son to an institution. Since Trenton is not "medically fragile," but only physically impaired, Medi-Cal would not fund in-home nursing care for him. Neither San Diego City Schools, the YMCA nor the San Diego Regional Center for the Developmentally Disabled provide care programs for children with disabilities. But Trenton, who is paraplegic, requires one-on-one attention. If Lindhurst is no longer able to care for her son at home, she fears his cognitive advances thus far will diminish and he'll fall victim to what's called "acquired mental retardation."
"If he goes into an institution, he's going to have a 6-to-1 [patient-to-nurse] ratio," she said. "He is not going to get the individualized attention and it will impede his progress completely. This ends his opportunity for his potential for being independent and having a life at all."
Lindhurst has written letters to a dozen or so government officials pleading with them to stop Schwarzenegger from doing what she says will destroy her family. In a letter to the Governor's wife, Maria Shriver, Lindhurst appealed to her as a mother: "In my eyes, he [Trevor] is as perfect in every way and he was made to be just as he is, perfect," she wrote. "I hope the state of California isn't going to come between my son and I."
Ken Seaton-Msemaji, president of the United Domestic Workers of America, spoke to roughly 100 protestors standing in a light rain at last Friday's rally opposing the cuts. "Without quality home health care for everybody in California who needs it," he said, "the economy will get worse because people won't be working [and] paying taxes. The economy will get worse because we'll have to put thousands and thousands of people in institutions that cost $40,000 to $45,000 instead of only $8,000.
"We will have to kill the hope of what it means to be able to age with dignity, or be disabled and live with dignity," he said.
Jim Sexson takes care of his wife, Marilyn, who was diagnosed in 1991 with chronic progressive multiple sclerosis. She's been home from a nursing home for a little more than a year now, since Jim found he could quit his job and survive through the IHSS program. Marilyn no longer needs the three different strong medications that the nursing home had her taking to relieve her anxiety and pain.
"She's happy and she can function at home," Sexson said. "But, the big difference is that I can now scratch her head, scratch her nose-she can't do these things. In a nursing home, you can't get somebody to scratch your head, you know, rub your cheek," he said."She's happy where she is."