Jason’s Battle for Life : Health: The family of a severely handicapped 9-year-old is waging a cordial court battle to obtain more in-home care. The outcome will surely set a precedent in Orange County.

SANTA ANA — No one doubts that Jason Alan Goldberg of Yorba Linda needs a lot of help just to stay alive. The 9-year-old quadriplegic--blind, deaf, retarded and suffering from cerebral palsy--has a million-dollar smile but lungs not worth a dime.

Nurses have to pound his chest five times a day just to keep his lungs clear. He dons an airtight mask four times a day just to breathe the medicines that help keep his air passage free.

“No one said life would be convenient,” says his father, Russ Goldberg.

But for Goldberg and his wife, Monica, who moved from Culver City to Orange County two months ago, getting help with Jason’s care hasn’t been easy.

They are now in Superior Court in a cordial but significant battle with the Orange County Development Disabilities Center over who should pay the cost of Jason’s round-the-clock nursing care. The result undoubtedly will set a precedent for home care for the handicapped in Orange County.

“We have tremendous sympathy for the Goldbergs; we greatly admire their determination not to put Jason in an institution,” said Donald Sizemore, spokesman for the center. “But if the courts make us provide the care the Goldbergs want, it will have a significant impact on our budget for future cases.”

The Goldbergs, who have three other children younger than Jason, want 16 hours of daily nursing care for their son. Monica Goldberg is a registered nurse; she covers the other eight hours in the day.

What the Orange County center says it can give them is 32 hours a month. Its officials agree that Jason needs much more. But they have told the Goldbergs that other state assistance should be available to them.

This week, Superior Court Commissioner Julian Cimbaluk ordered the center to provide 16 hours a day of service to the Goldbergs until a hearing can be held, probably in early 1990.

The Orange County center had already provided the 16 hours to the Goldbergs on an emergency basis, beginning in October. And Sizemore says the center will gladly give the Goldbergs permanent, 16-hour daily help if that is what the court eventually orders. But, he added, it will mean turning to the state Legislature for more money.

This was not the first time the Goldbergs have gone to court for their son. But then, Russ Goldberg says, he and his wife have done a lot of things they had never anticipated before Jason was born.

Monica Goldberg takes the late shift in nursing care for her son. She sleeps with a room monitor next to her ear so she can listen to her son’s breathing. No night is free from two to three trips to his room, usually for more treatment to keep his breathing clear. His parents know that one choking bout could kill him.

Vacations or even weekends away are almost unheard of for the Goldbergs.

“Much of the past nine years has been a blur,” Russ Goldberg said. “But Jason is Jason. We’ve never known him any other way.”

They first learned about their son’s condition shortly after his birth in Santa Monica in 1980. He suffers from CMV, a virus disorder that attacks the immune system; it is often transmitted when the mother has a virus of her own.

The Goldbergs, who both work in the health-care field, got some state help, first eight hours a month, then 25 hours a month, and eventually 100 hours a month. But they know that Jason needs 16 hours a day--496 hours a month.

“We were stressed out; we had no home life, I had no friends,” Monica Goldberg said, recalling those early years.

Jason required hip surgery in 1986, and after that the Goldbergs were certain that they would have to get more help. In early 1987, they got it, through the John Hancock Insurance Co., which paid for 16-hour-a-day nursing care.

The first major problem came in late 1988, when the Goldbergs and the insurance company disagreed over how much longer the policy should run. The Goldbergs went to court in Los Angeles and won an extension, thanks to help from a group of lawyers from Protection and Advocacy, a nonprofit corporation in Glendale which specializes in helping the handicapped.

But in preparation for the final insurance payments two months ago, the Goldbergs went back to the Westside Development Disabilities Center for help. Westside, after first saying no, finally agreed to pay for 16 hours a day when the insurance ran out.

But before that happened, Goldberg accepted a job as chief operating officer for Placentia-Linda Community Hospital. That required the family to move to Orange County.

“We were told, or we were under the impression, that the service Westside was going to provide would simply be transferred to the Orange County center,” Goldberg said.

But they were shocked to learn that that wasn’t true. The Orange County center, based in Orange, they were told, had a 32-hour-per-month maximum. Each of the state’s 21 regional disability centers sets its own guidelines.

So that’s when Monica Goldberg came up with what her husband believes is an ingenious plan. She asked the center if it would let her take her quota for the year all in one month. That would give Jason the constant care he needed until the couple could figure out what to do.

Sizemore said the center agreed “out of empathy for the Goldbergs. There is no question that Jason’s needs are very serious.”

That gave the Goldbergs time to get a state hearing, which they lost, and then go to court.

Russ Goldberg believes that the state can win in the end only if the Goldberg family wins.

“It would cost the state much, much more for Jason’s care if we were forced to put him in an institution,” he said.

State officials for the Department of Developmental Services in Sacramento generally agree.

“It depends on the individual case, but no question our inclination is to do everything possible to keep the child in the home,” said Harold Pitchford of the department’s community services division.

Putting Jason in an institution, even a small residential unit, is out of the question for the Goldbergs. One-on-one attention is vital to Jason for him to stay alive, they explain. But they also add that sending him away would violate their Christian faith.

“We are family,” Russ Goldberg said. “We wouldn’t put one of our other children away if something went wrong. We’ve invested nine years of our lives in Jason. We won’t give him up now.”

If the Goldbergs do win, it’s not likely to anger the Orange County center.

“We provide 150 different services to the community; we’ve had to put our priorities in other areas where the needs were,” Sizemore said. “If we’re told that (16-hour nursing care) is what we should be doing, then we’ll do it. But we will need help. A dozen Jasons would tremendously affect us.”

It would mean $150,000 a year probably, he said, compared to the $30,000 spent now on most cases.

But the Goldbergs thank attorneys Catherine Blakemore and Marilyn Holley for teaching them that parents of the disabled have rights.

The Goldbergs now have an insurance plan that should provide the care their son needs, beginning in July. But a court decision in their case, they know, could affect other parents.

“God gave us Jason for a reason,” Russ Goldberg said.