The way it’s been explained to her family, 20-year-old Ellie Cizek has about 18 months to regain the memory and thinking skills she lost on the Colorado ski slopes in January, when she glanced off a chairlift post and slammed headfirst into a tree.
So imagine their frustration this spring when, only four months into her recovery from a traumatic brain injury, her health insurer denied further care at a specialized rehabilitation center in Omaha and the family had to bring Cizek home to St. Paul.
“Insurance is pretty mean to brain-injured patients,” Cizek’s sister, Josie, said last week as the family prepared a fundraiser to pay for her care.
It’s a common refrain for patients like Cizek — and a growing concern in the United States, where the concussive force of sport injuries, car crashes and other accidents causes 1.7 million traumatic brain injuries each year, including 90,000 severe enough to cause long-term disability.
Doctors often recommend cognitive rehabilitation — a set of therapies to retrain patients’ brains and restore lost brainpower — beyond what insurance companies cover. Insurers face the dilemma of trying to hold the line on therapy costs, especially if it appears that patients have plateaued in their recoveries, amid mixed evidence about what works best. And families often learn that insurance coverage is ending just as they see substantial progress in their loved ones.
Getting rehab right is crucial: A traumatic brain injury can rob patients of memory, thinking skills, emotional regulation and even motor control of their arms and legs.
High-profile successes, such as former U.S. Rep. Gabrielle Giffords, draw attention to the potential of cognitive rehabilitation, but also to the fact that most people can’t afford the level of care she received.
A 2011 U.S. Institute of Medicine report concluded that rehab is often “incomplete” for those with severe brain injuries and that “many patients may not receive prescribed treatments due to limitations in payer plans.”
“You’re dooming people to social Darwinism — who has [access to care] and who doesn’t,” said Pete Klinkhammer of the Brain Injury Alliance of Minnesota, an advocacy organization.
To a visitor’s eye, Cizek is every bit the smiling young woman who made friends easily at Cretin-Derham Hall High School in St. Paul and then at the University of Kansas. The accident left her in a coma for days and in an amnesia-like state until April.
The physical scars have faded, but there are gaps in her planning and reasoning skills, and doctors have recommended inpatient rehab services.
“She can communicate and understand, but when she tries to plan an event or plan into the future, it just doesn’t quite stick,” said her father, Bill Cizek.
Ellie Cizek participates in group therapy at Courage Center in Golden Valley, but her parents want her to return to Quality Living Inc., in Omaha, one of the only inpatient rehab centers for traumatic brain injuries in the Midwest, so she can receive more intensive services during this critical period of healing.
Unfortunately, the fact that Cizek can walk and talk has weighed against her, because her insurer required some form of physical disability in addition to her cognitive problems to approve prolonged inpatient therapy.
Cognitive rehabilitation is an umbrella term for an approach that includes speech, occupational and physical therapy, and other techniques that coax injured portions of the brain to repair themselves or to kick-start other parts of the brain to take over.
Research on the effectiveness of cognitive rehab has accelerated since the wars in Iraq and Afghanistan, where so many soldiers suffered brain injuries from roadside bombs that traumatic brain injury has been dubbed the “signature injury” of those conflicts.
Even so, experts say there is limited evidence about its effectiveness, the number of sessions that are most effective and whether inpatient care is superior.
While some people have improved their thinking and reasoning skills years after brain injuries, most neurological recovery tends to occur in the first 18 to 24 months, said Ruth Gromek, who manages outpatient brain injury rehab services at Hennepin County Medical Center.
“Doesn’t mean that is the end-all,” Gromek said. “But the sooner the recovery comes, I guess, the better.”
All of which creates urgency for Cizek’s family.
Her cognitive skills return in fragments. This spring, she could write the word triangle in her familiar handwriting, but couldn’t identify one from a picture of various shapes.
Now she is able to carry out daily routines — like slipping on headphones and running a mile or two at a nearby track. It is a rare opportunity for calm and freedom in a world in which she can’t drive and is constantly monitored.
“I want to get my independence back,” she said.
One challenge, her father said, is that Cizek feels healthy, but lacks the foresight to understand why she still needs therapy to get on with her life. “Her goal is [going back to] KU, but she doesn’t know how to get there,” he said. “She thinks she can get out of bed tomorrow and go.”
Insurers are cautious
The Brain Injury Association of America believes there should be no arbitrary caps on days of cognitive rehab because treatment of patients is so individualized. Texas has mandated that insurers cover the services, and lawmakers in California and other states have considered a similar step.
But insurers have been cautious. In the absence of clear research showing the benefits of cognitive rehab, they don’t want to pay for an expensive service that might not work.
A month at Quality Living, according to the Cizeks, costs $27,000.
Bloomington-based HealthPartners has a general policy of covering up to 10 visits of initial, outpatient therapy, and then will consider additional visits if there is evidence that the patient is making progress toward specific cognitive goals.
Most insurers do not cover appointments once progress has stopped — or so-called “maintenance” appointments to simply preserve a patient’s level of brain function.
Insurers are updating their policies according to the latest research, said Eileen Smith, a spokeswoman for the Minnesota Council of Health Plans. The HealthPartners recommendation, updated last month, is an example — its limits aren’t based on an arbitrary number of visits but on whether a doctor believes additional therapy will yield continued improvement.
“It’s not a financial limit, but is based on goals and objectives and improvement,” Smith said.
The Cizek family declined to identify their insurance company, a national carrier, because they don’t want bad publicity to taint any appeals they might make.
Cizek has no memory of “the incident,” as she calls it. Too many questions about the future or too many people in a crowd cause her stress and she slips away for a quiet walk.
The last couple of months have felt like a typical teenage summer, with Cizek relaxing at home and enjoying her family and friends.
But her father remains persistent, quizzing her every night with memory questions such as: “How many cards are in a deck?” and, “How many states are in the U. S.?” For now, her answer to both is “52.”
Her father said he hopes that the coming of fall, when Cizek’s friends leave for college and the social calendar dries up, will give his daughter a cue that she needs to stick with therapy and seek a return to Omaha.
She will visit Kansas next week and talk with a university administrator about disability services and what level of independence she will need to reach before she can return.
“I want her to set some goals,” her father said, “and then achieve those goals.”