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"Aid for California’s disabled in peril"

Los Angeles Times

Funds to hire personal and domestic assistance could be cut under governor's revised budget.

By Mary Engel, Los Angeles Times Staff Writer
May 19, 2008

Salvador Chavez is a matchmaker. He helps people with disabilities find in–home attendants to help with bathing, dressing, shopping, cooking, cleaning and other personal and household chores. He screens providers to make sure they respect the dignity of the disabled and reminds customers that workers have rights too.

But many of his clients, along with 84,000 low–income elderly and disabled people across the state, could lose some or all of those services under the revised state budget released Wednesday by Gov. Arnold Schwarzenegger.

Chavez, 35, would be doubly hurt. Because of muscular dystrophy, a genetic disorder that breaks down muscles, he uses a wheelchair by day and a ventilator by night.

He depends on in–home assistance to get him out the door each morning to do his job.

"A lot of my staff wouldn’t be able to come into work if it were not for that attendant coming in and helping them get ready," said his boss, Lillibeth Navarro, director of Communities Actively Living Independent and Free, a nonprofit resource center in downtown Los Angeles. "I thought that California was all about hope and enabling people with disabilities to live and contribute."

About 400,000 low–income disabled and elderly Californians receive state–subsidized in–home support services; about one–fifth of them would lose services or see hours reduced.

In addition, the governor’s spending plan would freeze the state’s contribution to service workers’ wages and eliminate cost–of–living adjustments for Supplemental Security Income, a federal–state program that provides a monthly cash benefit to low–income aged, blind or disabled people.

"The governor himself has said that these are difficult decisions in a really tough fiscal situation," said John Wagner, director of the state Department of Social Services.

The proposed budget would preserve in–home support services for the most severely impaired, those who score in the top two tiers of a five–tier disability scale, Wagner said.

Everyone below that would lose state funding for in–home domestic help –– housecleaning, shopping, preparing meals –– but not for personal services such as help with getting in and out of bed, bathing, grooming or eating, he said.

Ben Rockwell, 62, would be among those deemed to not need help with household chores.

Confined to a wheelchair, he has post–polio syndrome, chronic obstructive pulmonary disease, congestive heart failure, diabetes, osteoporosis, rheumatoid and osteoarthritis and severe cataracts.

He is able to live at home in Long Beach with the assistance of an attendant he calls an "angel."

Gerardo Lopez now provides both personal and domestic services, including lifting Rockwell into his wheelchair every morning and mopping the kitchen floor.

If the domestic portion of those services were cut, Rockwell doesn’t know how he’d do his laundry or buy groceries.

"I would rather die than be placed in a nursing home," he said.

But what he fears most is that the cut in hours –– along with the freeze in pay –– would drive away Lopez, who already works two jobs to make ends meet.

"He’s the best attendant that I’ve had in 20 years," Rockwell said.

"When we finally find a good one, we relish and we cherish it. But he needs to be able to have quality of life too."

Chavez considers himself lucky to have family members to help him.

After separating from his wife a few years ago, he moved back in with his parents. His sister, Juana, helps him get out of bed each morning and prepares his breakfast.

The state’s in–home services program allows recipients to hire relatives as attendants, a boon to families when the time needed to care for a loved one can cut into full–time jobs.

It also boosts the self–esteem of the people who are disabled.

By paying for their care, they can contribute to the family’s economic well–being.

That sense of dignity is often hard–earned.

Chavez was mortified when, during his senior year at Montebello High School, his relentless disease so weakened his muscles that he began falling down.

When his doctor told him that it was time to use a wheelchair, Chavez remembers thinking, "In high school, with the girls? No way."

Working at the independent living center and other agencies introduced him to the disability rights movement.

"It opened my eyes not to be embarrassed about myself or others," he said.

Chavez maintains a busy schedule and a wry sense of humor even though he returns from work so exhausted each day that his sister helps him into bed to rest for half an hour. He was told as a teenager that he would not live beyond his 20s.

If he makes it to 40, he’s been told, it will be like turning 90.

The extra help with meals and laundry he now gets through in–home support services allows him to devote his waning energy to his 7–year–old daughter, the two soccer teams he coaches on weekends and his job finding attendants for others.

It’s the people who don’t have his support network that Chavez worries about the most.

"There are clients who don’t have family," he said.

"If they don’t have in–home supportive services, they can’t live by themselves."