LOOMIS (AP) — Born with spinal muscular atrophy, a genetic disease that prevents muscle development, Anthony Muli has never walked and his doctors never expected him to live past age 2.
Now, at 24, he’s a sports fanatic and a whiz on the computer. His room inside his grandmother’s house in the Northern California town of Loomis, east of Sacramento, is decorated with San Francisco 49ers and Sacramento Kings memorabilia.
He enjoys as much of life as he can with the help of his 72-year-old grandmother and caretaker, Jo Ellen Zerr, who does everything from cleaning his tracheotomy tube to driving him to his medical appointments.
The level of care is made possible in large part because of California’s In-Home Supportive Services program, which helps about 435,000 California seniors and people with disabilities. The program pays caretakers, many of them family members, hourly wages and benefits between $8 and $14.78 to help people get dressed, cook and bathe. For her work, Zerr, a retired clerk, receives about $2,800 a month before taxes to do a job she would do for free.
“I would take care of him regardless,” she said.
Facing another budget shortfall, Gov. Jerry Brown has proposed taking Zerr up on her offer. The Brown administration wants to eliminate in-home services for people who do live with someone else, a move that would save the state about $164 million in the new fiscal year that starts July 1. Since many recipients live with parents or other family members, the move would affect 60 percent of IHSS recipients.
“This is not nice stuff, but that’s what it takes to balance the budget,” Brown said in releasing his latest spending plan Thursday.
Muli opposes the action. He said if he didn’t have his grandmother’s help, someone else would have to care for him and that person or institution would cost the state more.
“For me and other people in my situation, just not having these hours to have the type of care, it not only hurts health-wise, but quality of life,” he said.
Brown’s proposal, along with previous efforts to reduce wages and services, reflect the ongoing tug-of-war between a program that maintains people’s quality of life by keeping them out of institutions and finding state savings at a time when the recession has ravaged public resources. The governor introduced the same proposal last year, but the Legislature rejected the proposal and never included it in the budget.
According to the nonpartisan Legislative Analyst’s Office, the Legislature has tried to cut more than $600 million from the in-home program since 2009, with little success. The program is funded by a mix of federal, state and county funds, and the state’s share is projected to be about $1.4 billion for 2012-13.
The state has achieved some savings by requiring applicants to show proof that they need in-home care, but other cost-cutting efforts have fallen flat. For example, the state thought it could save $140 million by using machines to dispense medicine, but that pilot program was never implemented. An anti-fraud effort pushed by former Gov. Arnold Schwarzenegger was never fully implemented.
Advocates and unions representing the caretakers have succeeded in blocking past efforts to reduce caretaker wages down to the minimum wage and trim hours for patients who are better able to care for themselves.
The latest battle involves a federal lawsuit challenging a 20 percent across-the-board reduction that was enacted as part of automatic, midyear budget cuts when state tax revenue fell short of projections.
U.S. District Judge Claudia Wilken in Oakland is expected to rule later this month on whether the state’s so-called trigger cuts are legal. The unions representing the workers say the state is not allowed to cut their benefits until the court is able to determine that it doesn’t risk institutional placement, which could violate the Americans with Disabilities Act and other federal laws.
The lawsuit was filed by Disability Rights California and other groups on behalf of in-home support recipients and by unions that include five Service Employees International Union locals and the United Domestic Workers-American Federation of State, County and Municipal Employees, whose members include in-home caregivers and attendants.
The State Employees International Union-Long Term Care Workers in Los Angeles, which represents 180,000 in-home care providers and nursing home workers throughout California, is advocating for a dedicated source of funding for in-home services. Wyatt Closs, a spokesman for the union, said the state saves when people are able to stay in their homes, rather than be placed in nursing homes or institutional care facilities.
“This program is one that has been documented to clearly save lives because it takes care of our most vulnerable,” Closs said. “It really is one of those situations of cutting off your nose to spite your face.”
The Legislative Analyst’s Office estimated last year that it costs about $13,000 a year to keep a person in their homes. Union officials say it would cost taxpayers three times that amount, or more, if the same people were placed in nursing homes or other institutions, though not all would leave their homes.
Brian Jones, a Republican lawmaker from Santee who serves on the Assembly Health Committee, said unions have prevented the state from making necessary cuts.
“The labor union’s concern is going to be protecting the dues that they receive from those members, more so than protecting the program,” Jones said. “I think many Californians would be shocked to realize that if you’re going to take advantage of in-home supportive services and take care of your own family member, that you are required to join a labor union.”
Zerr, the grandmother, said she does not mind paying dues to a union because it provides caretakers a unified voice. She said the in-home program provides a cushion for their family’s expenses but she and her husband, Ed, have used their retirement savings to cover many other expenses, including a specially equipped van to accommodate her grandson’s wheelchair.
“I just think about these kids that don’t have someone that would care for them,” Zerr said. “To me, they’re saving more money because they stay healthier in the home environment. If he (Muli) was in a facility, I don’t think his lungs would be cleared.”