For War’s Gravely Injured, Challenge to Find Care
By DEBORAH SONTAG and LIZETTE ALVAREZ
Published: March 12, 2007
When Staff Sgt. Jarod Behee was asked to select a paint color for the
customized wheelchair that was going to be his future, his young wife
seethed. The government, Marissa Behee believed, was giving up on her
husband just five months after he took a sniper’s bullet to the head during
his second tour of duty in Iraq.
Ms. Behee, a sunny Californian who was just completing a degree in interior
design, possessed a keen faith in her husband’s potential to be
rehabilitated from a severe brain injury. She refused to accept what she
perceived to be the more limited expectations of the Veterans Affairs
hospital in Palo Alto, Calif.
“The hospital continually told me that Jarod was not making adequate
progress and that the next step was a nursing home,” Ms. Behee said. “I just
felt that it was unfair for them to throw in the towel on him. I said,
‘We’re out of here.’ ”
Because Ms. Behee had successfully resisted the Army’s efforts to retire her
husband into the V.A. health care system, his military insurance policy, it
turned out, covered private care. So she moved him to a community
rehabilitation center, Casa Colina, near her parents’ home in Southern
California in late 2005.
Three months later, Sergeant Behee was walking unassisted and abandoned his
government-provided wheelchair. Now 28, he works as a volunteer in the
center’s outpatient gym, wiping down equipment and handing out towels. It is
not the police job that he aspired to; his cognitive impairments are
serious. But it is not a nursing home, either.
Like the spouses of many other soldiers with severe brain injury, Ms. Behee,
also 28, transformed herself into a kind of warrior wife to get her husband
the care she thought he deserved. By now, there is a veritable battery of
brain-injured-soldiers’ relatives who have quit their jobs and, for some
extended time, moved away from their homes to advocate for and care for
these very wounded soldiers during long hospitalizations.
In the eyes of five such relatives interviewed, the military health care
system, which is so advanced in its treatment of lost limbs, has been
scrambling to deal with an unanticipated volume of traumatic brain-injury
cases that it was ill equipped to handle. Largely because of the improvised
explosive devices used by insurgents in Iraq, traumatic brain injury has
become a signature wound of this war, with 1,882 cases treated to date,
according to the Defense and Veterans Brain Injury Center.
In general, these caregivers said that their grievously wounded soldiers had
either been written off prematurely or not given aggressive rehabilitation
or options for care. From the beginning, they said, the government should
have joined forces with civilian rehabilitation centers instead of trying to
ramp up its limited brain-injury treatment program alone during a time of
war. That way, soldiers would have had access to top-quality care at
civilian institutions that were already operating at full throttle and might
be closer to home.
In fact, many soldiers do have that access. But unlike Ms. Behee, many
caregivers only belatedly come to understand how to negotiate the daunting
military health care system.
Generally, after severely brain-injured soldiers are medically evacuated to
the United States, they are treated first at Walter Reed Army Hospital or
Bethesda Naval Hospital. Relatively quickly, the military, depending on the
branch, initiates a medical retirement process that turns the soldiers’
health care over to the V.A. If soldiers succeed in deferring retirement,
they remain covered by a military insurance policy that, if pressed, pays
for private care.
Still, the military hospitals tend to discharge seriously brain-injured
soldiers to V.A. hospitals, regardless of their active or retired status. It
is how the system works, and challenging it requires constant haggling,
which often leaves the families of the severely wounded soldiers feeling
abused, resentful and anxious for those soldiers without an advocate.
“We have been let down by a system that is so bungling and bureaucratic that
it doesn’t know what it can and cannot do and just says ‘No’ as a matter of
course,” said Debra Schulz of Friendswood, Tex., whose son, Lance Cpl.
Steven Schulz of the Marines, 22, suffered a severe brain injury during his
second tour in Iraq.
Offers of Help
Early on, at least two top-ranked nonprofit civilian centers, the
Rehabilitation Institute of Chicago and the Kessler Institute for
Rehabilitation in New Jersey, made overtures to the government. Since the
Vietnam War, their leaders said, while the V.A. has focused primarily on the
chronic care of aging veterans, the civilian acute rehabilitation system has
been dealing daily with brain-injured patients, fine-tuning their care.
Dr. Bruce M. Gans, chief medical officer of the Kessler Institute, contacted
senior military and V.A. physicians. “I said, ‘Please let us help. Please
let us be used as a resource,’ ” Dr. Gans said. “Especially in the early
days, they had no capacity to take care of these kids. There was either no
response or a negative response. We just didn’t understand.”
Last week, Dr. Joanne C. Smith, chief executive officer of the
Rehabilitation Institute of Chicago, met in Washington with senior Pentagon
officials and found far keener receptivity to the idea of extending civilian
sector treatment to more soldiers, she said. After revelations by The
Washington Post of problems with outpatient care at Walter Reed and Bob
Woodruff’s reporting on ABC about traumatic brain injury, the tenor of the
conversations was “action-oriented,” Dr. Smith said.
“There was a high degree of acceptance that there is a gap in the military
system’s current ability to take care of particularly the profoundly
injured,” she said.
V.A. officials, however, do not believe there is a problem or any need for
rescue by the private sector.
The V.A. has centralized the care for severe traumatic brain injury at four
hospitals that specialized in brain injury before the war. Those four,
converted into “polytrauma centers” by Congress in 2005, have been gradually
beefed up and the level of care has improved since Sergeant Behee arrived at
Palo Alto in the summer of 2005, advocates for veterans say. But they still
have a total of only 48 beds.
Some 425 soldiers have been treated for moderate and severe traumatic brain
injury at the polytrauma centers in the past four years, according to the
Defense and Veterans Brain Injury Center.
“At the moment we are handling the numbers,” said Dr. Barbara Sigford, the
V.A.’s national director for physical medicine and rehabilitation. “The
trauma centers are running close to capacity, but there are always beds
Harriet Zeiner, the lead clinical neuropsychologist at the V.A.’s polytrauma
center in Palo Alto, said care at the polytrauma centers was “tremendous.”
She and Dr. Sigford said the great majority of soldiers and their families
had been satisfied. A few disgruntled families, they said, grew frustrated
with the slow recovery process and directed their anger at the V.A.; many
went “through the system early on while we were still building the blocks,”
Dr. Sigford said.
Susan H. Connors, president of the Brain Injury Association of America, said
she was more concerned about follow-up care once soldiers returned to their
communities, a concern of all advocates for these soldiers. The polytrauma
centers, Ms. Connors said, are “pretty good.”
Dr. Sigford of the V.A. said, “We really are able to take care of a
But Dr. Smith of the Rehabilitation Institute of Chicago disagreed in the
“The V.A. has not been doing this for the last 35 years, and there is no
way, with the complexity of this injury, that the V.A. system is prepared to
get to parity with the civilian acute rehabilitation system overnight,” she
said. “They’re dabbling in brain injury, and you can’t dabble in brain
A Growing Group
The severely brain-injured are among the most catastrophically wounded
soldiers, and recovery can be painfully slow or, in some cases, entirely
elusive. “There is no prosthetic for the brain,” said Jeremy Chwat, vice
president for program services at the Wounded Warrior Project, an advocacy
The Wounded Warrior Project organized a meeting on traumatic brain injury in
Washington attended by about three dozen caregivers last fall. One raised “a
huge, sad ethical question,” Mr. Chwat said, related to the advances in
military trauma care that have saved so many lives: “Are we doing these
young men and women a service by bringing them home alive?”
Mr. Chwat said the severely brain-injured soldiers were a relatively small,
but growing, subset of the wounded whose needs were particularly acute.
“Their families need to know that they have options,” he said. “Our message
to the V.A. is that the V.A. is still providing them care if they’re paying
for a private facility. But that’s a cultural shift for the V.A., and, while
their ears are now open, bureaucracies don’t change on a dime.”
That is a lesson Edgar Edmundson, 52, of New Bern, N.C., has been learning
and relearning since his son, Sgt. Eric Edmundson, sustained serious blast
injuries in northern Iraq in the fall of 2005.
Mr. Edmundson was aggressive, abandoning his job and home to care for his
son, calling on his representatives in Washington for help, “saying no a
lot.” But even he did not come to understand his son’s health care options
quickly enough to ensure that his son was not “shortchanged” in the critical
first year after his injury.
Two days before Sergeant Edmundson was wounded near the Syrian border, he
visited with his father on the telephone. Mr. Edmundson urged his son, then
25 with a young wife and a baby daughter, to “stay safe.”
In an interview last week, Mr. Edmundson’s voice cracked as he recalled his
son’s response: “He said, ‘Don’t worry, because if anything happens, the
Army will take care of me.’ ”
While awaiting transport to Germany after initial surgery, Sergeant
Edmundson suffered a heart attack. As doctors worked to revive him, he lost
oxygen to his brain for half an hour, with devastating consequences.
A couple of weeks later, at Walter Reed in Washington, on the very day that
Sergeant Edmundson was stabilized medically and transferred into the brain
injury unit, military officials initiated the process of retiring him.
“That threw up the red flag for me,” Mr. Edmundson said. “If the Army was
supposed to take care of him, why were they trying to discharge him from
service the minute he gets out of intensive care?”
Mr. Edmundson fought the retirement on principle, winning a temporary
reprieve. Still, he did not understand that his son’s military insurance
policy covered private care. When Walter Reed transferred Sergeant Edmundson
to the polytrauma center in Richmond, Mr. Edmundson believed that he was,
more or less, following orders.
Mr. Edmundson was disappointed by what he considered an unfocused,
inconsistent rehabilitation regimen at what he saw as an understaffed,
overburdened V.A. hospital filled with geriatric patients. His son’s morale
plummeted and he refused to participate in therapy. “Eric gave up his will,”
he said. In March 2006, the V.A. hospital sought to transfer Sergeant
Edmundson to a nursing home.
Mr. Edmundson chose instead to care for his son himself, quitting his job at
a ConAgra plant. For almost eight months, Sergeant Edmundson, who was awake
but unable to walk, talk or control his body, received nothing but a few
hours of maintenance therapy weekly at a local hospital.
One day, by chance, Mr. Edmundson encountered a military case manager who
asked him why his son was not at a civilian rehabilitation hospital. That is
when Mr. Edmundson learned that his son had options. He did some research
and set his sights on the Rehabilitation Institute of Chicago.
Sergeant Edmundson is now the only Iraq combat veteran being treated there.
The first step in his treatment in Chicago, Dr. Smith said, was to use
drugs, technology and devices “to reverse the ill effects of not getting
adequate care earlier, somewhere between Walter Reed and here.”
For example, she said, Sergeant Edmundson’s hips, knees and ankles are
frozen “in the position of someone sitting in a hallway in a chair.” They
are working to straighten out his joints so that he can eventually stand,
she said. They have taught him to express his basic needs using a
communication board, and they hope to loosen his vocal cords so he can start
speaking. He is also learning to chew and swallow.
“He has a profound cognitive disability,” Dr. Smith said. “But he can
communicate, albeit not verbally, and can express emotions, including humor
and even sarcasm.”
A couple of weeks ago, she said, when his family came to visit him, Dr.
Smith asked Sergeant Edmundson if he was happy to see his daughter. He used
his board to say yes. She asked him the same about his mother. He said yes.
And then she asked him about his older sister, Anna Frese. He said no. She
repeated the question twice more, wondering if he was pushing the wrong
button, until, Dr. Smith said, “he looked up at me with a huge, wicked
Searching for Options
In early 2006, Denise Mettie of Selah, Wash., signed away her son Evan’s
health care options without realizing it. She agreed to a medical retirement
for her 23-year-old son only weeks after he was initially declared “killed
in action” only to be saved. That left him dependent on the veterans’ health
care system, where, after a tumultuous journey through several hospitals, he
now faces transfer from the “coma stimulation” program at Palo Alto to a
“At the very beginning, there was a V.A. doctor who said, ‘You know, he’s
not going to come any further, let’s put him in a nursing facility and let
you get on with life,’ ” Ms. Mettie said. “I was not ready to give up on him
then and I’m not now. If there is a private rehab that will take him, I’m
going to get him there and finagle the finances by hook or by crook.”
Mr. Chwat of the Wounded Warrior Project said severely brain-injured
soldiers should be offered a one-year moratorium on medical retirement so
they can remain on active duty status with the insurance-covered privileges
to seek private care if they want it. Dr. Smith and other civilian
rehabilitation doctors suggest that the V.A., too, give the option of
private care to soldiers who have been discharged or retired.
On the other hand, Dr. Alan H. Weintraub, medical director of the brain
injury program at the private Craig Hospital in Denver, said wounded
soldiers were probably better off in the military health care system, which
he said offered open-ended care tailored to combat soldiers. Dr. Weintraub,
a retired major in the Army Medical Corps, said private acute care was too
expensive for the “funding stream” to cover.
Dr. Smith disagreed: “Are we accepting that these people are not going to
amount to something anyway, so they’re not entitled to the best acute care
that the United States has to give — at the front end of their potential
“Jarod Behee was headed for a nursing home,” said Felice L. Loverso, the
chief executive of Casa Colina in Pomona, Calif.
When Sergeant Behee arrived from the V.A. in Palo Alto, he was in severe
condition, essentially nonresponsive, said Dr. Loverso, a speech
pathologist. Casa Colina, which now has two other soldier patients and also
provides their families housing, first worked to “wake him up,” weaning him
from medications he no longer needed. He quickly started getting therapy
bedside, making relatively steady progress and then quite rapid progress
after a cranioplasty that repaired his skull.
“Potentially the same good things could have happened to Jarod at the Palo
Alto V.A.,” said Dr. Loverso, a former V.A. employee himself. “I like to
think it was due to our aggressive therapy.”
Because of his impairment, Ms. Behee said, her husband, who still has his
old Superman tattoo on his calf, does not agonize over his situation. “He
wakes up every morning with a smile on his face,” she said.
Lance Cpl. Steven Schulz, on the other hand, is just cognitively
rehabilitated enough to experience anguish, his mother, Debra Schulz, said.
Occasionally, Lance Corporal Schulz gets angry at his situation or feels
guilty toward his mother, who describes herself as an “Old South yellow dog
Democrat” who was not pleased when her son enlisted.
“He has told me that he needed to apologize to me for ever joining the
Marines,” Ms. Schulz said. “I say, ‘Son, we can’t look back.’ ”