Appropriate care difficult to find for brain injury victims

By ANDY MILLER
The Atlanta Journal-Constitution
Published on: 11/20/07

...In October 2004, Ben Fuller was a smart, healthy college student, driving to a friend's house. A pile of debris in the road forced him to swerve suddenly. He lost control of the car, which flipped over. A passenger died.

Fuller's back and neck were broken. He was transported to the Rome hospital, where a doctor put his chance of survival at 12 percent.

For weeks, he lay in a coma. During that time, his girlfriend Kelly learned she was pregnant with Logan.

When Ben came out of it, he was unable to walk, feed himself or perform simple tasks like shaving. His behavior also was different. There were occasional verbal and physical outbursts.

With Ben in need of rehabilitation for both his mind and body, his parents started looking for help.

After a year at Floyd Medical Center, Fuller went to Shepherd Center, where he relearned how to feed himself, brush his teeth and say a favorite prayer. But the Atlanta organization doesn't provide neurobehavioral services. Such facilities, besides offering various therapies, have specialists to work with patients one-on-one to improve their impulse control.

Unable to find the needed residential services in Georgia, the Fullers looked elsewhere. Floyd Medical, where Ben was scheduled to return after his Shepherd stay, agreed to pay for a three-month stay at the Florida Institute for Neurologic Rehabilitation. In Florida, Ben rebuilt muscles in his calves and relearned other activities. The institute kept him another eight months at no cost before he returned to Georgia.

Advances in emergency care over the past 30 years have allowed more people to survive brain injury. Hospitals have reported more Georgians getting treatment for traumatic brain injury, with about 54,000 hospital visits annually.

Yet the Brain Injury Commission report, which focuses on TBI victims with behavioral problems, says Georgia and other states do not have a systematic way of screening and identifying them.

In addition, health insurance — whether public or private — has tight limits on the treatments it will cover, the report says. The lifetime cost of care for TBI — ranging on average from $600,000 to $1.9 million— can accelerate with inappropriate hospitalizations, the report says...

Only one specialized residential option exists for such brain injury patients in Georgia, but it has limited space and rarely treats patients
in the Medicaid "waiver" program.

The Department of Community Health, which runs Medicaid in Georgia, criticized the report for inaccuracies on some of the programs' rules and terminology but did not challenge the central findings. The department said it is working to "improve service delivery systems."

Families generally must piece together whatever treatment services are available.

"Brain injury cuts across all economic levels," says Charles Fuller, Ben's father. "The only people who could deal [successfully] with this would be the super-rich."

Late last year, Ben's parents received special waiver funds from Medicaid to care for Ben at home. So he returned to the family's home in Calhoun in January. But the Fullers were unable to find sufficient help. The round-the-clock care exhausted them...

Wade Monk, a hospital attorney, says, "We are all aware he does not need to be hospitalized. He needs institutional care at a more appropriate facility."

But Monk adds: "There's probably no place in Georgia that offers the complete range of services that Ben needs — residential, supervision and rehabilitation..."

Even though Ben is eligible for Medicaid, Monk says, Medicaid probably will not pay for his current care at Floyd Medical because it is considered non-medical.

The costs for the bed at the hospital can surpass $2,000 a day.

Toll on families is crushing...

The commission's report says that Fuller's care, because of inappropriate placements, is at least $500,000 more than if he had been sent immediately to rehabilitation and behavior programs — a figure that the Medicaid agency disputes...

The Brain and Spinal Injury Trust Fund Commission, with an annual $3 million budget, offers grants of up to only $15,000. State auditors have criticized the agency for high administrative expenses and for aiming grants at community services more than medical care. Craig Young, the executive director, says administrative costs have been reduced, and that its grants can't cover medical bills...

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