Room 491, where Ben Fuller lives, has filled with family.

Fuller's parents and older brother are there. His son, Logan, romps about the Floyd Medical Center room, crawling under furniture and playing with an inflated medical glove.

Jenni Girtman/AJC (ENLARGE)

'It has been a struggle every single day,' Charles Fuller (right) says of life following a 2004 auto accident that left his son Ben Fuller (left) brain damaged.

Jenni Girtman/AJC (ENLARGE)

Ben Fuller, who suffered a traumatic brain injury in a 2004 car accident, is visited by his 2-year-old son Logan at Floyd Medical Center in Rome, Ga., as registered nurse Jeane Bob Yarbrough observes.

GROUPS AT RISK What is traumatic brain injury? It's a blow, jolt or penetrating injury that disrupts the function of the brain. •Males are about twice as likely as females to sustain a TBI. •The two age groups at highest risk for TBI are 0 to 4 year olds and 15 to 19 year olds. •Blasts are a leading cause of TBI for military personnel in war zones. •African Americans have the highest death rate from TBI. •TBI hospitalization rates are highest among African Americans and American Indians/Alaska Natives. Source: Centers for Disease Control and Prevention

Fuller is slow to react to the action. Sitting in a wheelchair, he stares out into space for long periods of time. His mother asks him occasional questions, and each answer seems a struggle.

The Fullers have spent three frustrating years searching for needed services for Ben, who suffered a traumatic brain injury at 24 that left him prone to profane and violent outbursts. At each turn, they seem to run into roadblocks. It's estimated that thousands of other Georgia families have encountered similar problems.

A new report says Georgia lacks services for patients like Fuller, whose behavioral problems are linked to jarring blows to the head.

An estimated 187,000 Georgians have a disability related to a traumatic brain injury (TBI), and up to 10 percent of those may need ongoing care for TBI-related behavioral problems, according to the report from the Brain and Spinal Injury Trust Fund Commission. Those problems can include physical aggression and an inability to communicate and control emotions.

Because of that, many of those TBI victims end up institutionalized: in jails, prisons, even the state's mental hospitals. Some become homeless.

The absence of a coordinated system of rehabilitative care for these brain injury victims is largely due to a lack of public and private funding, according to the report, which calls the situation "a crisis."

Money is scarce because of a lack of understanding by lawmakers and insurers, experts say. Private insurers, as well as Medicare and Medicaid, "don't see these services as medically necessary," says Susan Johnson, director of brain injury services at Shepherd Center in Atlanta and a commission member.

The report calls for more training and support for caregivers, better screening of TBI-related behavioral problems and more funding for rehabilitation. Often, residential and community services for TBI patients are either too expensive or don't exist. The report also calls for the Georgia General Assembly to look into the state's deficiencies in dealing with traumatic brain injury.

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.

Injury 'cuts across all economic levels'

About 12 states are setting up services for people with behavioral problems, said Johnson of Shepherd Center. Georgia, compared with other states, "is probably on the bottom because there are limited public and private funds to meet people's long-term needs," she said.

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.

Finally, a nursing home was willing to take Ben. After five months there, however, he was brought by ambulance back to the Rome hospital, which protested the transfer.

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."

Over the three years since his accident, more than 150 nursing homes have declined to admit Ben, Floyd Medical says.

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 report's authors, though, say the financial stress on families is exacerbated by restrictions in services by Medicaid, the government insurance for the poor and disabled.

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.

Meanwhile, TBI's toll on families is crushing. Spouses and parents often have to quit work; many divorce or separate.

Adds Cindi Johnson, executive director of the Side by Side Brain Injury Clubhouse: "Parents who are injured become children to their children.''

Since Ben's injury, Charles Fuller quit his master's degree program and has not returned. Kay has cut back on her real estate agent work.

Ben has good days and bad days in Room 491. He listens and sings along to country music and Broadway CDs. Some subjects make him smile and giggle. He watches Animal Planet, Discovery Channel and football on TV. But without sufficient stimulation and rehabilitation, "he is going backward," Kay Fuller says.

"There is still hope for Ben," she says. "He has the will and the right to be everything he can be."

Their main hope is that Georgia Medicaid agrees to send Fuller to a TBI program in Tennessee, which could also provide housing for him.

"It has been a struggle every single day," Charles Fuller says. But, he adds firmly: "The last place Ben needs to be right now is an acute-care hospital."