Living on Hope : Parents Fighting to Bring Their Hospitalized, Helpless Son Home

Burt and Debi Shorr have driven more than 63,000 miles over the last 3 1/2 years to spend at least a part of each day with their son, Logan.

Their time together is like any other joyous family gathering. They take turns reading stories and singing songs to 4-year-old Logan. The boy rolls his eyes at a bad joke told by his father. (“Well, maybe you’ll like the next one,” Burt said.) The parents stay with him into the night until he drops off to sleep.

But there is one parental joy that the Long Beach couple ache for: They want Logan at home.

The boy has lived in hospitals virtually since birth. He suffers from Werdnig-Hoffman Disease, a very rare muscular paralysis that is usually fatal by the age of 4 or 5. He has no control of his muscles and is connected to a respirator that breathes for him.

The couple make the daily 50-mile journey from their home buoyed by the hope that one day Logan might be able to leave the Kaiser Permanente Medical Center in Hollywood, his home for several years.

“Being at home, we feel, will be best for him,” Debi Shorr said.

“Just about everything he knows of the world is in that hospital room,” her husband added.

The couple, however, have been frustrated in their attempt to bring him home because they can find no insurance carrier that will pay for the round-the-clock home-care nursing that the boy will require.

The Shorrs and their attorney believe that the boy’s care at Kaiser is largely custodial and that home care would be best for him.

“All the doctors and nurses agree that with the appropriate nursing services and care by his parents that he (Logan) could be sent home,” said attorney Joe Lawrence of the Western Law Center for the Handicapped in Los Angeles. “There exists no medical necessity that he be hospitalized.”

Thus, they have applied to their insurance carrier--Kaiser Permanente--and Medi-Cal for the nursing coverage. But even though it would be cheaper to care for him at home--as little as $250 a day as opposed to $1,000 a day at Kaiser--the parents’ requests have been repeatedly rejected.

The parents, willing to do some of the nursing themselves, have even reduced their request to 18 hours’ daily coverage. But that, too, has been rejected.

Lawrence said the parents have been sent back and forth between Kaiser and Medi-Cal.

“On the one hand, you have Medi-Cal saying it’s not the primary carrier and should not pay,” he said. “And you have Kaiser who says they don’t cover (24-hour) home nursing care.

(Medi-Cal officials point out that as long as the boy is getting acute-care coverage through a Kaiser facility or insurance, no public funds should be spent to care for the boy. Any question about coverage should be directed to Kaiser, state health officials add.)

“We believe Kaiser is reneging because . . . it would be cheaper for Kaiser to institutionalize the boy than for (them) to pay for home nursing service, even though home care is clearly more appropriate,” Lawrence said.

A provision in Kaiser’s coverage does provide for “part-time or intermittent” home care, but the parents and Kaiser disagree over what the provision means. Lawrence said “part-time or intermittent” could mean less than 24 hours nursing care each day. The parents have already offered to do one 8-hour nursing shift each day.

But Lee MacMahon, Southern California contracts manager for Kaiser, said “part-time or intermittent” coverage is for patients who might need home care for an hour or two each day or for several short periods each week.

Virtually no insurance carrier in the country offers coverage that will pay for the 24-hour, seven-day-a-week home nursing that Logan is likely to require, MacMahon said.

Kaiser officials do not like the suggestion that they are to blame for the Shorrs’ plight.

More importantly, Kaiser medical personnel deny that they ever told the Shorrs that their son was ready to go home.

Dr. M. Rudolph Brody, who has specialized in pediatrics for 19 years, said Logan has come close to dying several times in the last several years, including an almost fatal bout with pneumonia last July.

“It’s not just my opinion; the staff of 35 and several world-renowed specialists have looked at him and have come to the same conclusion,” he said. “I’m not concerned with costs; I’m concerned with what’s best for the patient.”

Even if the boy is deemed medically ready to go home, Brody said there are other factors to consider:

- Is the wiring in the Shorrs’ rented home sufficient to handle the equipment that will be needed to keep the boy breathing?

- What might be the response time of doctors and paramedics in the event of an emergency at the home?

- How will the parents themselves react in the face of trouble?

Change Possible

Should those questions be satisfied, Brody said he would consider urging a change in Kaiser’s insurance coverage to pay for extensive nursing care for the boy at home.

In recent months, Logan’s stable condition has prompted Kaiser’s medical and administrative staff to begin looking into the possibility of allowing the boy to leave. Kaiser officials are cautious in assessing their study, noting that its outcome cannot be predicted.

The Shorrs, appreciative of the excellent care Logan has received at Kaiser, nevertheless hold on to their dream. Glancing up at a ceramic hand imprint of Logan’s right hand on the kitchen wall, Debi Shorr said:

“I’ll never give up. . . . I just want him home.”