Advocates of Patients Say Many Caught in Rules Trap

Dozens of Southern California hospital patients, dependent on mechanical ventilators to be able to breathe but nonetheless able to live at home with proper nursing, are trapped in institutions because of inefficient and unfair state Medi-Cal policies, patient advocates say.

According to an estimate by the Advocacy Group for Ventilator Dependent People, 82 patients--who could be living more happily elsewhere if resources were available--were confined in Los Angeles and Orange county hospitals in 1988.

“A lot of patients just stay in the hospital a long time until they can find an agency that will accept them,” said a supervisor at a Santa Ana home nursing agency.

She said her company, Personal Care Home Health Agency, accepts a limited number of new Medi-Cal patients. But many others do not.

The problem was highlighted last month when Northridge Hospital Medical Center went to court to evict Shervin Firouzi, a ventilator-dependent patient who had lived at the hospital for nearly two years and had run up hospital expenses exceeding $1 million.

“In many ways, these people are in prison tighter than Sirhan Sirhan,” said William S. Prentice, a registered nurse who works with ventilator patients at Rancho Los Amigos Medical Center in Downey. “He gets to face a parole board every now and then.”

Among those trapped is Sarah, a 7-year-old polio victim. She has lived in hospitals since she was 2 months old, breathing with a ventilator.

Abandoned by Parents

She was abandoned by her parents soon after she became ill. Sarah could have left Rancho Los Amigos to live with an Antelope Valley foster family six months ago, but the foster family has not been able to find a state-approved home health agency willing to provide her with nursing care at the low rates the state Medi-Cal program pays.

“She wants a family,” said Dr. Irene Gilgoff, a pediatrician and head of the advocacy group. Gilgoff said Sarah is her saddest case.

State Medi-Cal officials argue that, in some cases, the cost of providing the in-home nursing care ventilator-dependent people need far exceeds the expense of caring for them in nursing homes or in so-called subacute hospital nursing units.

They also contend that although most ventilator-dependent patients require around-the-clock nursing, not all are sick enough to qualify for the more intensive care that an acute-care program would provide. In most cases, a patient must be classified as needing acute medical services before the Medi-Cal program will pay for at-home nursing.

Even if a ventilator-dependent person is deemed eligible for at-home nursing, advocates and attorneys say, the rate the state pays for nurses is inadequate.

The state pays $18.75 an hour for licensed vocational nursing in Southern California. Private insurers pay between $27 and $35 an hour for the same services.

Although the Medi-Cal program has raised its rates several times--partly in response to lawsuits claiming that the low rates caused patients to be denied services they were otherwise eligible to receive--many still consider the rates inadequate.

Claims Disputed

State officials, however, contend that nursing shortages are widespread and that patients would therefore be affected no matter how high the state sets its rates.

“I think the bottom line is these people require horrendous amounts of care, but they really don’t have to be in the hospital, and it could be done much less expensively in outside facilities,” said Dr. Kenneth Cohen, who works with spinal cord-injury patients at Rancho Los Amigos. “It could save everybody a lot of money.”

Medi-Cal officials dispute that the state could save money by paying for nursing care at home for these patients.

They also deny that large numbers of ventilator patients are stuck in hospitals against their wishes. Darryl Nixon, administrator of the Medi-Cal Los Angeles field office, said only one person in the county is awaiting a hospital discharge to go home. He said four others are seeking approval to receive nursing care at home.

Nixon said he did not know how many patients had applied for but had been denied eligibility for in-home nursing care paid by Medi-Cal.

Still at a Hospital

That was the situation faced by Firouzi, 24, a quadriplegic whose spine was injured in a 1987 diving accident. Although his brain was not injured, Firouzi depends on a mechanical ventilator to breathe and needs around-the-clock nursing care.

He gets around in a wheelchair controlled by a chin device, and he has done paintings that have been displayed in galleries. According to Medi-Cal rules, he is not sick enough to qualify for the intensive nursing care of an acute program.

Firouzi was admitted to Northridge in November, 1987, for what was to be a six-week rehabilitation program. However, he remained at the hospital until earlier this month, when he was transferred to Temple Hospital near downtown Los Angeles.

Northridge had sought to transfer Firouzi earlier, but he and his attorney had resisted the move because they considered the proposed new programs to be inadequate for his medical needs. Finally, the hospital sought to evict Firouzi and filed a lawsuit against him in Los Angeles Superior Court.

Firouzi accepted the transfer to Temple, although he was placed in a ward where most of the patients are comatose and the nurses there need special training to care for him.

‘Haven’t a Clue’

“He’s had an enormous amount of problems” at Temple, said his attorney, Marilyn Holle of Protection and Advocacy Inc. of Glendale. Protection and Advocacy is a law firm specializing in cases revolving around the medical needs of disabled people.

“They haven’t a clue about the special problems of spinal cord-injured people,” Holle said of Temple Hospital. “They ask him if something is too tight, or whatever, not figuring out that if you are a spinal cord-injured person, you can’t feel.”

Holle has a lawsuit pending against the state Department of Health Services contending that its treatment of Firouzi and other ventilator-dependent patients violates federal laws that require all patients to have equal access to treatment.

She also contends that it would be cheaper for the state to allow Firouzi to live at home with his sister Doreen in Canoga Park. His sister is willing to care for her brother for eight hours a day, meaning that the state would have to pay about $300 a day for 16 hours of nursing care. The state is paying about $330 a day for Firouzi’s care at Temple Hospital.

John Rodriguez, deputy director of the Department of Health Services, who is in charge of Medi-Cal, said it is impossible to compare the cost of hospital care to the cost of providing 16 hours of nursing.

‘Other Costs’

“Often there are other costs,” Rodriguez said, including the installation of wheelchair ramps, backup generators and other expenses. He urged Holle to contact him directly to determine why Firouzi was not considered eligible for a special waiver program that has allowed patients in similar circumstances to receive in-home nursing care.

Firouzi’s situation is not unique.

Russell Rowland, 39, severed his spine three years ago when he fell while doing sit-ups upside down while hanging from a bar and wearing gravity boots.

Since the accident, which left him paralyzed from the neck down, he has been at Huntington Memorial Hospital in Pasadena. The hospital, whose expenses for treating Rowland have reached nearly $3 million, has been looking for a subacute nursing program where Rowland could be transferred.

Rowland, who is married and has four stepchildren, would prefer to go home and have the state pay for in-home nursing. As a compromise, Rowland would be willing to go to New Start Homes, a Chatsworth nursing facility that specializes in ventilator-dependent patients. So far, the state has prevented Rowland from pursuing either alternative.

“Their attitude seems to be, ‘Let’s warehouse these people somewhere until they die,’ ” Rowland said of Medi-Cal.

Other Barriers

Even for those who do qualify for in-home nursing care, there are barriers.

Finding nursing care “is becoming our biggest holdup,” said Pamela DeWitt, a clinical nursing specialist at Childrens Hospital of Los Angeles.

At Childrens, two youngsters--including one who has been waiting 18 months--are ready to go home as soon as nursing services are arranged. Two others face being moved back to Childrens from their homes because their nursing agencies have decided to stop providing for their care.

One mother whose son was at Childrens for three months finally decided to care for him at home without the assistance of professional nurses. Billy Cothren, who suffers from muscular dystrophy, has required a ventilator to breathe at night since an operation in October.

“When we first came home, I didn’t know what I was doing,” said his mother, Debbie Cothren, who lives in Claremont.