TBI: Many Patients Do Not Get the Care Gabrielle Giffords Has

March 4, 2011 — -- Nearly three months after she was shot in the head, Arizona Rep. Gabrielle Giffords is progressing well in her rehabilitation at TIRR Memorial Hermann in Houston, where, according to her doctors, she is receiving a combination of physical, cognitive and speech rehabilitation. They say she is vocalizing more and is able to mouth the words to songs.

While Giffords is getting top-flight care at a facility that specializes in rehabilitation after major brain injuries, many patients get nothing close to it. The fine print in many health plans -- including Medicare and Tricare, which serves U.S. military members -- excludes coverage of certain types or even complete rehabilitation for thousands of patients with traumatic brain injuries, or TBIs.

"Cognitive rehabilitation services designed to improve cognitive functioning after a brain injury are not supported by reliable scientific evidence of efficacy," according to a 2008 Tricare coverage manual.

However, the manual stated that cognitive rehabilitation is subject to coverage if cognitive rehabilitation is combined with other forms of rehabilitation and "not billed as a separate service."

But the Brain Injury Association of America, a non-profit group that advocates on behalf of people with brain injuries, says studies have shown that cognitive rehab is very effective.

"We put out a call for cognitive rehabilitation as a six-year program," said Susan Connors, president of the Brain Injury Association.

Experts say that despite the promising research, insurance companies provide little coverage for long-term rehabilitation, leaving many TBI patients with almost nowhere to turn to get the services they need for recovery.

Monique Pomerleau is one woman whose family says she is in exactly this situation. Pomerleau, a 37-year-old mother of three from southern California, suffered a TBI after a serious car accident one year ago on Valentine's Day.

"She was ejected through the window of her car, and was in intensive care for 19 days," said Tom Pomerleau, Monique's father. "At one point, they wanted me to pull the plug, but we got signs she was going to make it."

After also suffering a broken collarbone, numerous infections, and, most seriously, hydrocephalus -- the buildup of cerebrospinal fluid on the brain -- Monique wound up spending seven months in what her father described as a convalescent home. He said that facility couldn't help her get the rehabilitation services she needed.

Pomerleau said he devoted his life to his daughter and was determined to help her recover.

"We've been working with her every night. We got her to drink, eat, speak a little, laugh and show emotion," he said.

Pomerleau said Monique never should have ended up in the facility where he said she languished for those seven months. He's been fighting to get his daughter into a long-term rehabilitation center that specializes in working with TBI patients.

"We're hoping to go to the Centre for Neuro Skills (CNS) so she can learn transitional living skills," he said. "I can only do so much for her."

But her insurance company, Health Net of California, denied the family's request for transfer to CNS. The family has now filed a lawsuit against Health Net of California. Health Net told ABCNews.com it is limited by privacy regulations from speaking in detail about Monique's case, but Pomerleau and his attorney, Lisa Kantor, say Health Net won't pay for the facility because it's considered "out of network." Health Net, Kantor said, has no in-network providers that offer long-term TBI rehabilitation.

About a month ago, Health Net authorized a month-long stay in a facility that does specialize in TBI rehab, but only offers short-term services.

"She should have been in a long-term center a long time ago," said Kantor. "Tom had to fight tooth and nail just to get this, and now we're going to have to start fighting for longer."

Getting Into Rehab Challenging for Many Patients

Specialists who treat traumatic brain injuries say there are a number of challenges faced by TBI sufferers trying to recover.

"Acute care hospitals are not set up to focus on things like re-integrating into families and emotional recovery," said Dr. Allen Sills, associate professor of neurosurgery at Vanderbilt University Medical Center in Nashville. "There's pressure to discharge patients to to lesser levels of care and there are also challenges about what that next level of care is."

Sills also said there aren't enough facilities that specialize in rehab and outpatient care as well as issues with insurance coverage for rehab services.

"Some patients have no insurance coverage at all and others have state-funded insurance that doesn't include that kind of care. Even patients with good private commercial insurance may have limited rehab benefits," Sills said.

"Increasingly, insurance companies are saying to health care providers, 'Don't talk to the patient about where he or she should be discharged until you talk to us first. Don't recommend a comprehensive rehab center if we don't cover it,'" said Susan Connors, president and chief executive officer of the Brain Injury Association.

But according to America's Health Insurance Plans (AHIP), the advocacy group representing more than 1,200 health insurance companies including Health Net, long-term rehab after a brain injury may not be in every patient's best interest.

"There is a general resistance to pay for services when there is no benefit to derive from a service," said Susan Pisano, a spokesperson for AHIP. "Companies always have to question whether particular services will help a particular patient."

High Hopes for Increased Awareness

Although many military service members who suffer TBIs are unable to get the care they need, experts say the U.S. military has made progress in recognizing the problem.

"The Department of Defense estimates that 179,000 service members suffered a TBI," said Connors. "The severely injured end up in the VA [Veterans Affairs] health system." The problem with that, she said, is the VA system isn't well-coordinated.

"So its not for lack of desire, but I believe some service members will not get access to comprehensive, specialized, timely care because the system is not well coordinated, not because there's a lack of coverage," Connors said.

Other TBI specialists say they hope what happened to Gabrielle Giffords will have a lasting impact.

"Hopefully, increased public attention will translate into greater public action," said Sills.

That's one of Tom Pomerleau's biggest wishes as well. He said he wants his daughter's case to be a lesson to people never to give up hope -- or the fight.

"We're not just fighting for Monique. It's for those following behind Monique who can't get the care they need."