Brain Injury Advocates Push for Comprehensive Treatment

September 14, 2011 -- In 1997, Lise Petrauskas woke up on the side of a Montana highway, not knowing who she was.

Then 27, Petrauskas was working on a ranch in the Bitterroot Valley before starting a master of fine arts program at the University of Montana. She'd been riding a horse that got spooked and ran across the highway – but doesn't remember the accident itself. Eventually, a colleague found her and took her to an area hospital. Once hospital staff determined that nothing was broken, Petrauskas was sent home – without any neurological imaging.

She knew something was wrong, but decided to forge ahead with her studies. “People just thought I was nuts.” Her instructors and classmates assumed she was trying to write avant-garde fiction, but it was just hard for her to tell a story in a straightforward way.

Over the years Petrauskas, who now lives in Portland, saw a series of doctors whose diagnoses varied: depression, post-traumatic stress disorder, fibromyalgia. Finally, in 2009, a Kaiser physician diagnosed her with a brain injury and referred her to the Brain Injury Rehabilitation Center (BIRC) in the Cedar Hills area near Portland.

She cried when she found out that her symptoms – which included fatigue and a loss of executive function, the ability to execute plans or make decisions on even a day to day level – were attributable to a real cause, and that she could be treated.

BIRC offers cognitive rehabilitation therapy to its patients, some of whom have traveled from across the country to be there. Cognitive rehabilitation is designed to help re-integrate people with brain injuries into their lives, giving them exercises relevant to their injuries, therapy to discuss the emotional stress and help develop coping mechanisms as well as vocational rehab.

Providers also accompany patients to their work site and take them out in community settings to further ensure they’re ready to return to their normal lives – though many, like Petrauskas, have been living with an untreated brain injury for years.

While touted as the best treatment for brain injury survivors by many providers -- and advocacy groups like the Brain Injury Association of Oregon – cognitive rehabilitation therapy is still considered an experimental therapy by most insurers, who will cover only the most basic treatment for brain injury.

Brain injury survivors who’ve gone through cognitive rehab do well, but more research is needed, and there’s a lack of funding, said Kathy de Domingo, BIRC's director of program improvement who also lobbies for the clinic.

Not all brain injuries show up in CAT scans or MRIs, and it's up to the provider to know what the patient's base line of behavior and cognition is, which is usually impossible in an emergency room setting, de Domingo said.

Workers’ compensation insurers tend to offer the most generous coverage for cognitive rehabilitation, de Domingo said, because they want patients to return to work as soon as possible. Other insurers are more likely to focus on returning the patient to a basic level of self-care, such as feeding and bathing or speech therapy for patients suffering slurred speech or aphasia.

Those who treat and advocate for patients with brain injury sometimes call it the “quiet epidemic,” because not all brain injuries show up on CAT scans or MRIs – and patients sometimes don't show symptoms until months or years later.

BIRC is somewhat unique, de Domingo said, but there are other places in the country that offer comprehensive cognitive rehab for brain injury. Availability depends largely on insurance laws in different states – so Michigan, where all automotive insurance policies are no-fault, has a greater availability of cognitive rehabilitation therapy than many other places.

Jeri Cohen, a board member of the Brain Injury Association, said things are changing in Oregon as well. Senate Bill 381, signed into law in 2009, requires insurers to cover all “medically necessary” treatments for traumatic brain injury, although it doesn’t specify which treatments are medically necessary. Max's Law, passed in 2008, requires coaches to receive training in recognizing concussions and doesn’t allow student athletes with those symptoms to play.

Cohen said the BIA hopes to collaborate with the Oregon Medical Association on legislation to require continuing medical education on brain injuries. A previous version of this bill failed due to OMA resistance, she said, possibly because it required such education for all doctors, including those with specializations such as podiatry, who’d be less likely to encounter these problems.

Cohen herself was diagnosed with a brain injury a year after she survived a 2001 car accident. “I knew nothing about brain injury. I was rather appalled at the lack of concern and knowledge among providers.”