California cuts to in-home care funding threatens a mother's ability to provide for her son with muscular dystrophy

From The Press-Enterprise in Riverside, Calif.:

Shirley Andrade (pictured) knows that a 75-cents-an-hour pay cut from the state doesn't sound drastic.

But for this single Riverside mother, it could mean giving up her child.

She fears that the decrease in income could mean the difference between caring for her disabled son herself and relinquishing him to a nursing home.

Come July 1, Andrade, 55, and other caregivers around the state and the Inland area might see their in-home support services check shrink from $10.85 an hour to $10.10 an hour for the maximum of 298 hours a month.

The consequences so alarm Andrade, she became physically ill during a recent interview in the home she bought two years ago for Baltazar, now 34.

"His life is my life," she said of her son, who was diagnosed at 3 with Duchene muscular dystrophy. "This is stressing me out. I'm afraid of losing him."

Slashing caregivers' pay is part of a state budget plan that would save the government almost $325 million over the next two years, said Lizelda Lopez, deputy director of the Department of Public Social Services in Sacramento.

Ironically, this reduction would cost the state more money, $5,000 to $8,000 a month, to place people such as Baltazar who need 24-hour care in skilled nursing facilities, according to Nona Hall-Sandoval, assistant director of the 27-year-old Inland Caregiver Resource Center in Colton.

The governor's proposal will eliminate this one and 11 other such support centers in California that serve families of the brain impaired or chronically disabled, she said.

Hall-Sandoval, who has been hearing from caregivers fearful of the cuts, predicted a "mass exodus" from California by people in straits similar to Andrade's.

Doctors initially told Andrade that Baltazar had slim odds of surviving beyond 18. The progressive wasting caused by the inherited disease eventually strikes the heart and breathing muscles, and living until 30 is rare, she said.

At 9 he stopped walking. But Baltazar is 34, "a miracle," Andrade said. "I keep hearing that he's outlived his life. But it's his attitude and me spending every penny to keep him happy and out of the hospital."

Divorced 27 years ago, Andrade often worked two and three jobs as a housekeeper and gardener to provide adequately for her son and supplement government aid.

She scraped together enough to buy a modest 54-year-old home made wheelchair accessible by the prior owner. The monthly payments are $1,900, covered by half of Baltazar's monthly disability check and her in-home support services check.

The carpeted day room with a huge picture window facing the street where Baltazar could gaze for hours from his hospital bed sold Andrade on the dream home.

"We've tried everything, including swimming therapy and horseback riding," she said. "But his muscles just go."

His arms and legs no longer work. He weighs 105 pounds, but Baltazar's mind is clear. Autographed photographs of Tiger Woods and other sports icons, Britney Spears and Jillian Barberie cover the walls. The hum from the aquarium soothes him.

Baltazar tried to study architecture at college after graduation from Norte Vista High School in 1994, but his deteriorating condition was a problem.

His mother has learned to keep him alive with a nebulizer, ventilator, an oxygen machine, a catheter to remove waste and breathing and a feeding tube.

He can't eat for fear of choking and developing his dreaded nemesis, pneumonia. Medi-Cal recently trimmed Baltazar's assistance from a licensed vocation nurse from 12 to eight hours a day.

Andrade reads to him from the Bible. Baltazar explores the world through cable TV, DVDs, even the Internet.

For the latter, he uses his tongue to maneuver a specially-rigged mouse over the onscreen keyboard.

He pores over computer printouts of NASCAR schedules. He studies recipes of such food as egg drop soup from the Food Channel, although his diet consists of four daily cans of a high-protein fluid.

The two used to live in an apartment in downtown Riverside next to Plymouth Tower, where Andrade worked 32 hours a week for 12 years. She loved her job as a certified nursing assistant until the senior retirement center changed owners and laid her off last November.

In January, she needed knee surgery to repair three torn ligaments in her right knee from years of assisting Baltazar in and out of his wheelchair.

She receives $191 a week in state disability but can't come up with $1,500 to replace her 1999 Dodge van's used hydraulic lift that's leaking fluid. Then she's faced with high utility bills and property taxes.

"I voted for Arnold Schwarzenegger because of his movies," Baltazar said. "I'm really sorry I did."