Linda Mac helps Frank Moore of Berkeley get his socks on.
Linda Mac, left, and Mikee LaBash help Frank Moore in Moore's Berkeley home.
Chad Hillstrom of Berkeley gives Nick Feldman a shave in Feldman's Berkeley home. Feldman fears cuts to a state program that pays Hillstrom to take care of him will force him out of his home and into a nursing home.
By Doug Oakley
Frank Moore, Marissa Shaw and Nick Feldman can't survive on their own.
The East Bay trio uses wheelchairs and depend on others to care for such basic needs as using the toilet, brushing teeth, eating.
They are three among the 416,000 Californians whose essential daily help at home depends on a $5.7 billion program that pays friends, relatives and professionals.
Suffering from cerebral palsy, they have little money and say they would probably be on the streets or wasting away in nursing homes were it not for the taxpayer generosity that keeps them clean, fed and clothed.
Now, they fear they may lose their caregivers if Gov. Arnold Schwarzenegger and the Legislature, desperate to close a $19 billion budget gap, cut about $637 million from the In-Home Supportive Services program. Disability advocates estimate the number of people employed through the program is at least double the number of recipients, or about 800,000.
"If (in-home care) gets cut, people will die in their homes," said Shaw, who lives alone in a Richmond apartment and who has no relatives in California.
"Without my attendants, I can't get dressed, I can't get undressed at night. My attendants cook and clean for me, they bathe me. Without them I basically can't function."
Schwarzenegger has proposed cutting more than half the in-home services funding that pays caregivers $9 to $11 an hour for a maximum of 263 hours a month. Caregivers say that's a paltrydays a week.
This spring, people in wheelchairs camped out for a month on a street median in Berkeley to show what the cuts might cause. They dubbed the camp "Arniville," after the governor. Now they plan to camp out on the state Capitol steps Wednesday.
Last year, the state cut $82 million from in-home services, which would have reduced by 36,000 the number of people receiving care. But a federal judge issued injunctions against the cuts after some disabled recipients and unions who represent their caregivers sued. The state has appealed one case to the federal appeals court, while another awaits a U.S. Supreme Court hearing.
Officials from the governor's office declined to talk about the proposed cuts, referring inquiries to the in-home program administrator, the California Department of Social Services.
"We have a $19 billion budget deficit," said Lizelda Lopez, spokeswoman for the department. "All large programs have to be cut, and this is a significantly large program."
Asked about the disabled community's fears of being forgotten in nursing homes or living on the streets, Lopez said the "reductions are difficult."
The department has no plan to implement the cuts, she said, so it is unclear how many people might lose their caregivers.
However, if last year's $82 million cut would have reduced recipients by 36,000, a nearly eightfold cut would drop many more.
A Berkeley-based performance artist said he fears for his future.
Frank Moore, 64, has not been able to walk or talk since his birth. He and his two caregivers, partner Linda Mac and Mikee LaBash, watch over Moore 24 hours a day, giving physical therapy, feeding him, taking him to the toilet and bathing him.
Moore just came home from six weeks in intensive care at Alta Bates hospital in Berkeley after complications from asurgery and has a breathing tube in his neck.
"We take care of him around the clock," Mac said. "You can't just walk away from Frank and say, 'Your 263 hours are up.'"
Moore said he is not worried he will be kicked out of the program with the cuts, because he is such an extreme case. But he is worried about losing the little money the three use to survive -- about $3,000 a month.
"I don't know that I would even have my life if I didn't have the care," Moore said through Mac's translation. "I am concerned about the money being cut. The amount we're getting now is barely subsistence money."
Cutting the program will cost the state more money in the long run, said an East Bay independent living advocate.
"People are going to be forced into institutions and that costs money ...," said Lauren Steinberg, of the Center for Independent Living in Berkeley. "What they really need to do is raise taxes to support the program the way it is."
Nick Feldman, a Berkeley resident with cerebral palsy, said he is able to have a life with the help of 21-year-old Chad Hillstrom and two others, who help him get out of bed in the morning, dress him and get him ready for the day. Feldman lives with his girlfriend Vanessa Castro, and the two plan to marry.
Feldman camped out at the Arniville protest in Berkeley and intends to go to the Sacramento protest Wednesday.
"What the governor needs to understand is he's not just trying to put people in nursing homes, but he's also going to destroy the jobs of the caregivers," Feldman said.
"This is probably one of the most important issues in the disability community right now. People would probably rather live on the streets than go to nursing homes. It's so discouraging."