Image: Steven Jones
Kael Alford  /  Kael Alford for msnbc.com
Steven Jones, 18, practices walking with therapist Elizabeth Raymond at Pate Rehabilitation in Anna, Texas. Four years after he was shot in the face by a neighbor, the teenager, like other victims of traumatic brain injury, has struggled to find consistent, high-quality care.
Image: JoNel Aleccia
By JoNel Aleccia Health writer
msnbc.com
updated 2/8/2011 8:44:36 AM ET 2011-02-08T13:44:36

A month after being shot in the head outside a Tucson supermarket, Arizona Rep. Gabrielle Giffords has settled into a premiere Houston brain rehabilitation center, where experts say she has begun the most arduous — and important — part of her recovery.

Family and staff have cut back on frequent updates of Giffords' progress at TIRR Memorial Hermann hospital, saying they'll report "important news" when it happens. What is clear, however, is that her care at one of the country's top five rehab sites will be paid for through a federal workers compensation program, providing essentially unlimited time and money to help her regain cognitive, physical and social functions.

“What she’s needed, she’s gotten,” said Pia Carusone, Giffords’ chief of staff, who confirmed to msnbc.com that Giffords’ care after the Jan. 8 attack that killed six and injured 13 will be treated as a workplace injury.

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But 284 miles away, in Anna, Texas, another gunshot brain injury victim has not been so fortunate.

Steven Jones, 18, has struggled to access rehabilitation care for four years, ever since he was shot in the face in 2006 by a neighbor boy messing around with a 9-millimeter handgun.

The bullet left Steven blind in his right eye, deaf in his right ear, with little function in his left arm and hand and difficulty walking. Now 18, he still has a 4-inch hole in his skull. His IQ dropped from 121 to 81 after doctors had to remove 40 percent of his brain, said his father, Randy Jones.

Steven has received some high-quality therapy, thanks to charity, at Pate Rehabilitation, a specialized brain injury center that normally charges up to $1,000 a day. The bulk of his care, however, has been provided by state Medicaid and other providers, whose resources — and expertise — were limited.

Two-thirds sent home with no further care
“They give you what you get,” said Randy Jones, 55, a high school history teacher and football coach who adopted Steven as a toddler along with his sister, Chely, now 14, from foster care. “Some of the rehab we did was whatever we could. It’s like going to a restaurant. If you have $5, this is what you can order for $5.”

Unlike Giffords, Steven's access to the early, intensive therapy that doctors now believe is key to the fullest recovery was limited and inconsistent. What’s worse, say brain injury advocates, is that he is not alone.

“Gabrielle Giffords is likely to receive ideal care because of who she is,” said Mark Ashley, chairman emeritus of the Brain Injury Association of America, based in Vienna, Va. “You and I would not be in the same situation.”

About 1.7 million people suffer traumatic brain injuries every year in the U.S., according to government statistics, with about a quarter resulting in moderate to severe cases. Of the 275,000 hospitalized for brain injuries every year, about two-thirds are sent home with no further medical treatment, Ashley said.

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Of those who do receive care, it’s likely to be far less than they need — or expect. Most people with private or public health insurance assume that they’re covered for traumatic injury and the rehabilitation to recover from it — but they’re wrong, Ashley said.

“We estimate that fewer than 4 percent of patients who need this care actually get it,” said Ashley, who is co-founder and president of the Centre for Neuro Skills, which operates centers in California and Texas.  “In the last several years, more policies have been written that exclude rehabilitation altogether.”

Giffords is expected to remain for an unknown period of time, but at least several weeks, at TIRR Memorial Hermann, where doctors say she is receiving a “tailored and comprehensive” rehabilitation plan.

In the hospital, she's getting six hours of therapy a day most days, although the schedule may be slightly lighter on weekends, said Carusone, Giffords' chief of staff. Once released, she's likely to receive unlimited outpatient care, experts estimated.

In contrast, Steven Jones has received a hodge-podge of rehabilitation treatment marked by delays and inconsistent quality. In 2006 and 2007, right after his injury, he received about three months of intensive care at Pate Rehabilitation, thanks to the agency's scholarship program, said Pate Senior Vice President Jane Boutte.

And he's receiving another three months of intensive, targeted care at Pate now through April under short-term care provided by a cash-strapped state program.

In between, Steven spent three years with limited therapy through state Medicaid providers who treated him, at most, for three hours a day, two days a week. Even that care was often interrupted by paperwork delays and other bureaucracy, said his mother, Elaine Jones, 50, also a high school teacher.

"You're at their mercy for everything," said Elaine Jones, who has hired neighbors, students and other teenagers to stimulate and supervise Steven, who still requires constant attention.

With that help, Steven has made some progress. He learned to walk and talk again, albeit with difficulty, said Kier Brison, clinical director at Pate. He returned to high school part-time and eventually graduated, and has taken an English class at a local junior college.

He's a "more mellow" teenager now than he was before his injury, less argumentative and more compassionate with his parents, said Randy Jones. Damage to his frontal lobe has subdued his emotions: "He doesn't really get mad."

He's a funny young man whose personality comes alive on the computer. His MySpace page includes references to "craterhead Steven" and the tag line: "so i'm not bullet proof?" Family friends gave him a job 10 hours a week at a local fast-food place, cleaning windows and making onion rings — with one hand.

But with better care, it's possible Steven could have improved even more. Once an aspiring musician who befriended stray dogs and was active in his church, Steven can't do any of that now. He has few hobbies or activities, spending most of his time at home, where he lives with his parents and sister. Steven has a dream of sharing an apartment with a friend someday, but his mother doubts that will happen.

"Steven is now a prisoner in his body and in our house," she says. "He cannot be by himself."

The trouble was not with Steven's medical care, Elaine Jones notes. Surgeons and others at Parkland Health and Hospital System and the Baylor Health Care System in Dallas gave him topnotch care during the height of the crisis.

"Once you're no longer an inpatient and you become an outpatient, that's when your world begins to rock," Elaine Jones said.

Nationwide, costs for inpatient acute rehabilitation average at least $1,600 a day, according to a 2003 analysis of brain injury patients published in the journal Archives of Physical Medicine and Rehabilitation. They follow intensive care costs that can range from $150,000 to $200,000 a week, plus other medical expenses. Outpatient care can run from $350 to $1,000 a day, depending on the level of treatment. All told, care for a traumatic brain injury can easily approach several hundred thousand dollars very quickly, experts estimate.

Giffords covered under federal workers comp
Because Giffords’ injury occurred while she was on the job, it has been filed as a claim under the Federal Employees Compensation Act, according to Carusone, who said staffers are taking care of the paperwork.

Under FECA, everything is covered, said Edward Daniels, a Willow Park, Texas, claims representative with 30 years of experience administering and defending FECA cases. All bills for services are compared with an authorized fee schedule, with reimbursements varying according to ZIP code areas. However, no co-payments are required and any excess costs cannot be billed to the injured patients.

“There’s no time limit, there’s no dollar amount,” said Daniels. “Whatever the cost of it is, it’s paid at 100 percent.”

In addition, Giffords will be compensated for most of her lost wages, he said.

If she had not been working when she was shot, her injuries would have been covered by the Federal Employees Health Benefit program and likely by her husband, Mark Kelly’s, benefits as an astronaut. Carusone, Giffords’ chief of staff, declined to specify which of several federal insurance plans Giffords chose.

Still, for many ordinary Americans, care can be much more limited. While Giffords could receive months of inpatient rehabilitation, the nationwide average is just 16.6 days, Ashley said.

After leaving TIRR Memorial Hermann, Giffords likely will receive as much outpatient care as she needs, for as long as she needs it. By contrast, many insurance plans limit coverage to 20 to 24 outpatient visits per year, or one session every other week.

Retraining a badly injured brain is a delicate process that takes time and expertise, Ashley said. Targeted, individualized therapy is the only way to stimulate the brain to reset itself and rebuild ravaged neural connections.

"We don't have a pill or surgery that corrects this very complex condition," he said. "The problem is that rehabilitation has not been viewed as medicine, but, in fact, it is the single most important medicine we have to treat the disease of brain injury."

'If we don't stimulate the brain, it doesn't respond'
Denying patients rehabilitation coverage essentially denies them recovery. “If we don’t stimulate the brain, it doesn’t respond,” Ashley added.

Health insurers protest that characterization. Treatment payment is guided by research and medical indication, and by the level of coverage that employers and patients pay for, said Susan Pisano, spokeswoman for America’s Health Insurance Plans.

“A patient or a patient’s family may believe more services may be provided than actually are,” said Pisano, whose agency represents 1,300 health insurance companies that cover more than 200 million Americans.

But Boutte, the Pate executive, said that insurance companies themselves define and decide what's "medically necessary," sometimes defying the advice of doctors and therapists. They often use what clinicians regard as arbitrary guidelines for sending patients to lower, less-expensive levels of care or to deny care at all.

"We have a patient right now, an inpatient, and the (insurance) case manager said he's walking 1,000 feet, he really can go to day treatment," she said. "He can't walk and find his way out of a paper bag, but he can walk."

In Steven Jones’ case, his access to rehabilitation was limited by the Medicaid system and other state programs, where resources vary widely. As a foster child, he was eligible to be covered by Medicaid.

His parents could have added him to the insurance provided by their jobs as educators, but after Steven’s injury, Randy Jones says he's glad they didn’t.

“Medicaid paid for just about everything as far as his injury factor was concerned,” Randy Jones said. “Anybody else would have had to pay out $50,000 to $60,000.”

Even if they had chosen to use their health insurance for Steven’s rehab, it wouldn’t have covered the costs. “It was thousands of dollars a month and schoolteachers can’t do it,” Randy Jones said.

'It drives all of us crazy'
The result? Steven has not improved much since he left Pate in 2007, said Kier Bison, neuro-psychologist and clinical director.

“He still has some issues with the right side of his body that he needs work on. He still has issues with information processing, general overall cognitive skills,” she said.

If he’d had better care for longer, care similar to Giffords’, would it have made a difference?

“Oh, that’s huge,” said Bison. “Especially for someone like Steven, he’s young. The younger you are, the better you are able to progress.

“But if he were getting the higher level care like the congresswoman’s, he might not even require a caregiver — and he still does.”

For Bison and others who work with brain-injured people, the frustration is fierce when patients are turned away because of cost. Many former clients wind up in nursing homes, drugged into compliance because the centers don’t have the skills to treat brain injuries. Others wind up in jail or on the streets, she said.

Randy and Elaine Jones know that more intensive care might have made a difference for their tall, sweet-tempered son. They know that if they'd had more resources, Steven could have had the kind of focused, intensive treatment Giffords is getting. But they also know that's the way the world works.

"She is probably going to receive immediate care at 100 percent to get her up and going, whereas us, we have to take it when we get it," Elaine Jones said. "That breaks your heart because it's your kid. But, as unfair as it is, I get it."

The Joneses say they'll continue to fight for Steven's care in hopes that he'll be able to pursue a fulfilling life at whatever level he can. They hope that Giffords' recovery from the horrific assault helps raise awareness of the struggles of less-prominent brain injury victims.

But when Randy Jones thinks of everything that could have gone differently, he doesn't dwell on disparities in therapy. He thinks all the way back to the neighbor boy with the loaded gun.

“We really don’t know the realization of what Steven could have been or would have done,” he said. “I really thought he was going to be able to do some neat things in life, but it doesn’t look like he’ll be able to fulfill those things.”

© 2013 msnbc.com Reprints

Photos: Rebuilding Steven's brain: Gunshot victim finds help in rehab

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  1. Simple task, tough recovery

    Steven Jones, 18, of Bells, Texas, was shot in the face four years ago by a neighbor boy with a 9-millimeter handgun. The blast left him blind in his right eye and deaf in his right ear, with difficulty walking. Doctors had to remove 40 percent of his brain and part of his skull. He is receiving therapy now through April at Pate Rehabilitation, a private brain injury center in Anna, Texas, but most of his care has come through Medicaid. Here, therapist Elizabeth Raymond holds Steven's left hand in place while he practices focusing on tasks with his right hand. Randy Jones, Steven's father, looks on. (Kael Alford for msnbc.com) Back to slideshow navigation
  2. Reaching out

    Steven Jones greets another patient at Pate Rehabilitation. Since he was hurt, Steven has become more "mellow," and affectionate toward family members, his dad said. "He's never emotional. He doesn't really get mad," said Randy Jones. (Kael Alford for msnbc.com) Back to slideshow navigation
  3. 'Most people take their health for granted'

    Steven Jones wrote an essay about brain injury and the role of therapy. Thanks to rehabilitation, he was able to finish high school and last year attended his first class in junior college, an English class. Therapy has helped Steven recover many skills, but experts say more intensive care could have helped him improve even more. (Kael Alford for msnbc.com) Back to slideshow navigation
  4. Sentimental support

    Steven Jones keeps a small skull on his keychain. "It gives me sentimental support," he says. Repeated infections forced removal of permanent plates to cover his brain. "This way I always know I have my skull with me," Steven says. (Kael Alford for msnbc.com) Back to slideshow navigation
  5. Learning to walk again

    Steven Jones walks between buildings at Pate Rehabilitation with his therapist, Elizabeth Raymond. Steven had to re-learn to walk once after the shooting, and again after a long-term hospital stay following a nearly deadly infection in his skull. His gait remains unsteady, but is improving. (Kael Alford for msnbc.com) Back to slideshow navigation
  6. Stimulating the muscles

    Steven Jones wears a device on his left leg to stimulate muscles that help prevent his foot from drooping while he walks. He once was a talented runner, but he no longer can run, his father says. (Kael Alford for msnbc.com) Back to slideshow navigation
  7. High quality care

    At Pate Rehabilitation in Anna, Texas, therapy for Steven Jones' brain injury might run between $550 and $1,000 a day, said Jane Boutte, senior vice president for the Dallas-based firm. Steven received three months of therapy in 2007 thanks to a scholarship program and is enrolled in another three months now, with brief payment through a state fund. In between, he had three years of limited, less-skilled therapy through Medicaid, which will not pay for Pate's services. (Kael Alford for msnbc.com) Back to slideshow navigation
  8. Exhausting effort

    After a long day of therapy, Steven Jones is tired. People with brain injuries get fatigued more quickly, according to Steven's therapist, Elizabeth Raymond. Steven is performing his daily activities with only 60 percent of his brain, so his brain is working harder than most and tires more easily. (Kael Alford / Kael Alford for msnbc.com) Back to slideshow navigation
  9. Tasks of daily life

    Steven Jones' occupational therapy includes skills like cooking and household tasks that will prepare him for a future of independence. Here, therapist Elizabeth Raymond helps Steven cut mushrooms with a specially designed rocker knife that can be used with one hand, and put them in a plastic bag. (Kael Alford for msnbc.com) Back to slideshow navigation
  10. Technology builds new skills

    To improve his motor skills, his therapist Elizabeth Raymond is teaching him to to play Wii Golf. "I could beat you with one hand!" he tells her. The objective of the therapy is to help him relearn to use his left hand, so he must use both hands on the control. (Kael Alford / Kael Alford for msnbc.com) Back to slideshow navigation
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