Centre for Neuro Skills presents an article from: KGET TV 17 Bakersfield, CA According to a national health care advocacy group, some 6,000 Americans a day suffer a traumatic brain injury. In a split second, victims are severely disabled from falls, motor vehicle accidents, and assaults. These are a life-altering injuries that scramble the brain's wiring, many times reducing an individual to an infantile state of function and dependence. Some call it "a living death." And yet, unlike cancer, stroke, and heart attack patients, brain injury victims are often denied insurance coverage once they're stabilized and leave the hospital. Now, TBI advocates are on a mission to raise the bar on the standards of care. Advocates say it's time victims of this "silent epidemic" be given a voice. Seven-year-old Anthony Forato suffered a traumatic brain injury following surgery to remove a tumor from his brain stem. He went from a vibrant six year old to a bedridden boy, robbed of the world and the body he knew. "Three months ago, he was doing nothing. Just lying in an I.C.U. bed, basically comatose," said Rachel Forato, Anthony's mother. "He was your typical boy, you know. We were glued together," said Anthony's father Gino. Anthony's parents struggled for weeks to convince their health care provider that he needed to be at the Centre for Neuro Skills in Bakersfield, widely regarded as a world-class facility for the rehabilitation of brain injured patients. "It took a lot of man hours and discussions with the insurance group to make them understand what to expect in the way of progress, rather than keeping us on a short time limit," said Chris Persel, Rehabilitation Director of the Centre for Neuro Skills. The Feratos consider themselves lucky. Their insurance carrier finally relented and agreed to pay for Anthony's medical rehabilitation. But it's not a blank check. Every two weeks we have a big meeting with the carrier. If there's no progress, they don't want to pay for it. "It's not a broken arm," said Persel. "It requires stimulation and rehabilitation to help them function at their best." The wife of former marine John Kerchner says it took her five years to persuade the Veterans Administration to approve coverage for her husband's rehabilitative care at CNS. "I guess they probably thought I would give up after a while," said Olivia Kerchner, John's wife. John Kerchner was an active duty marine, stationed at Camp Pendleton, when he crashed on his motorcycle ten years ago near Palm Springs. He was in a coma for three months then transferred to four different hospitals for treatment, until the V.A. said it was time to go home. "I asked them what kind of rehab could we get back home and they gave me a packet of exercises we could do at home - which was difficult since I had a toddler and an infant to care for," said Olivia. So they said you would be the therapist? "Basically, yes," said Olivia. But Olivia Kerchner finally prevailed. Her husband has been at the Centre for Neuro Skills for four years now, and he's making progress. Joe Petersen is John's bootcamp trainer. "Johnny's amazing," said Joe Petersen, owner of Building Better Bodies Fitness. "He's been through a lot, and he still fights and struggles and it takes a lot of love and compassion to work with this population. But they're people too, and lives can change in a blink of an eye." "Because of the accident, I lost my balance and I can't balance, so Joe's helping me get my balance back," said John Kerchner. CNS founder, doctor Mark Ashley says 30 years of research and application has proven, medical rehabilitation is the best tool for bringing TBI patients back into the fold. "The evidence is clear," said Dr. Ashley. "When we provide adequate rehabilitation services, we reduce disability, we increase independence and improve the overall quality of life for the individual." The range of brain damage among CNS clients runs the gamut. CNS says 70% of the clients who come here, return to work, once again in control of their lives. But it's a hard road and it's expensive. Neuro therapy often lasts more than a year. Total costs can run as high as $400,000 to $500,000 for the most
severely injured. Advocates say many times, the biggest challenge for these patients is not re-learning how to eat, drink and dress themselves again. It's convincing their insurance carriers that intensive medical rehabilitation is Page 2 critical to a successful outcome and it's cheaper. "Left untreated or partially treated, a brain injury can range from a million dollars to 30-million dollars in lifetime cost of care," said Dr. Ashley. "As disability is reduced, we reduce the long term cost of burden to the taxpayer or other-system burden." But Ashley says that line of thinking runs counter to the bottom line considerations of a for-profit health care industry that is run like any other big business, obligated to shareholders. "When you take a financial view of health care, you lose sight of health outcomes," said Dr. Ashley. For a patient's family, the journey back to normalcy can be a long and severely frustrating ordeal, leaving them financially and emotionally exhausted, living in limbo, wondering how long before the insurance company's risk managers will draw the line. "It's aggravating because in their world, everything's fine," said Gino Forato. "They go home to their families. To us, it's like, everyday we have concerns. We're worried, you know, is this our last week or this is our last day?" Now that's one side of the story. Next, we'll get an insurance industry perspective. And we'll take you to a historic hearing in Sacramento where, for the first time, advocates briefed lawmakers on current gaps in coverage and treatment for TBI victims. In mid-january, Ashley and his team went to Sacramento for a legislative hearing, that was three years in the making. "I have since had a total of nine brain surgeries in the last 28 years," said TBI patient George Visger. Lawmakers heard from TBI victims like George, who played for the San Francisco 49er's 1981 superbowl team - a victim of multiple concussions on the gridiron starting at age 13. "I continue to this day, still am fighting workmen's comp for various coverage," said Visger. They heard from Karen Speaker, a teacher in San Luis Obispo who pays out of pocket for her brain injured husband's respite care. "By the time I pay for Tim's care, because respite care is not considered medically necessary, I end up making about $15 a day which works out to about three dollars a period," said Karen. With TBI patients looking on, experts in the field offered a snapshot of the shortcomings of TBI treatment and care. "California has no centralized system of medical data collection specifically for brain injuries," said UCLA trauma epidemiologist David McArthur. "No one knows precisely how many people are living with TBI in California," said Roger Trent, PhD of the Department of Public Health. "No payers routinely cover non-hospital treatment, which is the standard form of care," said Dr. Ashley. "There's no cure for TBI. The best we can do is offer good management after TBI occurs," said David Houvda, PhD of the UCLA Brain Injury Center. Advocates say most employers, and the insurance companies carrying their policies, offer no benefits or limited coverage for the medical rehabilitation of disabled TBI patients. The state's top health insurance carriers were invited to this hearing, but no takers. One lobbyist came. He represents California's managed health care providers, and disputed claims that the industry is under insuring TBI victims when it comes to long-term medical rehabilitation. California health plans provide medically necessary health plan services to treat and rehabilitate patients with TBI in both in-patient and out-patient," said Charles Bacchi, Vice President of the California Association of Health Plans. "We may have clinical guidelines as health plans, that may trigger a medical necessity review once the number of specified treatments have been provided, but the need for a determination to stop providing coverage is absolutely subject to medical necessity." But the grey area is in the determination of what is "medically necessary." Critics say the insurance industry has a narrowly-defined interpretation of that concept, and the ultimate decision on long-term rehab is up to their physicians and risk managers. "Some health insurance carriers exclude rehab altogether, some carriers allow 30-to-100 days of rehab under duress or with significant pressure," said Ashley. The financial burden gets transferred from the private sector, which was paid to accept the risk, to the public sector and the taxpayer. Mark Ashley laid out a course for change. Among his recommendations were: Increase awareness about the social and medical impacts of TBI. Establish a statewide injury registry to track TBI patients.
More funding for the state's seven regional brain injury treatment centers. Legislation forcing insurers to provide better coverage for TBI treatment and care. Page 3 That hearing was largely the result of three years of lobbying by the California Brain Injury Association. Advocates urged lawmakers to examine a law recently passed in Texas that requires all accident and health insurers to provide patients access to medical rehabilitation following a brain injury. Traumatic brain injuries are also the signature injury among our wounded warriors coming home from the war on terror. Are HMOs more likely to deny or limit access to rehab than say PPOs or other providers? According to the Brain Injury Association, the answer is yes. And when it comes to Medicare or Medi-Cal insurance, it's even more restrictive. Could I purchase an insurance rider that would provide me access to a full regimen off rehab following a TBI? I asked Mark Ashley about that, and he says most carriers don't offer a catastrophic injury benefit in their plans. In fact, Ashley just fired off a letter to congress that says in essence, no American has adequate insurance to cover a traumatic brain injury. As a nation, America has been at war now, longer than ever before. And with many soldiers and marines serving two and three tours of duty in the war on terror, we're asking them to sacrifice more than ever before. But are we, as a nation, doing our best to heal the hidden wounds of our veterans, once they come home from combat? Traumatic brain injury and post traumatic stress disorder are the signature injuries in this war. Improvements in combat medicine, and body and vehicle armor have increased the survival rate for our wounded warriors. But, the number of unseen wounds are increasing as well, and challenging the government's ability to effectively treat our brain injured war veterans, who have become part of "the silent epidemic." Retired Army sergeant James Riley Browning was in one of the first units to roll into Baghdad in 2003. It was no cakewalk. "The first explosion hit us," said Browning. "It hit like a ton of bricks. Rocket propelled grenades were going off overhead. The ground-to-air missiles used for air defense, they were firing them along the ground. The concussion was just enormous." J.R. Browning can't remember a lot from that first week, but figures he suffered more than a couple dozen concussions from bomb blasts, while in his Bradley fighting vehicle or in combat. After two tours of duty, he came home, and the problems started. "I went into a deep depression, went through two or three jobs," said Browning. "I'd lock myself in a room for hours." Classic signs of PTSD. Confirmed by Veterans Administration doctors when Browning finally sought help. Browning now thinks he had PTSD in Iraq, but it wasn't diagnosed because he was medicated. "They put me on Prozac in the middle of a war zone, which I thought was a little odd," recalled Browning. "If they diagnose you, they have to send you home." "He had definite anger management," said Nicole Browning, J.R.'s wife. "I thought it might be more PTSD related, but learned it could be TBI." Other symptoms surfaced; long and short term memory loss and ever-present headaches. "Constantly," said Browning. "Right now I have a pretty good headache. Every time I go to them it's a different medication. They love their medications at the V.A." Browning and his wife suspected multiple traumatic brain injuries from combat, on top of the PTSD. But it wasn't until he filed a disability claim with the V.A. that the diagnosis was confirmed. "You know, I don't really blame them, because I was out relatively early before they started recognizing this was a problem," said Browning. The V.A. didn't return our calls for comment, but Mike Penny, a supervisor with the local Veterans' Services Office says if a vet thinks he has TBI, but hasn't been screened for it, he needs to file a claim with the V.A. "The key issue is they have to prove their case," said Penny. "That's where the diagnosis comes in. Unfortunately, I think the V.A. is overwhelmed. They're doing a good job, the best they can. Is there room for improvement? Sure, but I do think they're good." J.R. Browning's TBI troubles are actually on the mild end of the spectrum. There are much more graphic examples. War vets are coming home severely disabled, needing years of intensive medical rehabilitation. "TBI is the forefront," said Penny. "This is just the tip of the iceberg." The Department of Defense estimates at least 10% of Iraq and Afghanistan veterans may have sustained a combat-related brain injury. That's 150,000 out of the more than 1.5 million who have served or are serving. "I would tell them to get prepared for an epidemic," said Nicole Browning. There are no V.A. screening or treatment services in Bakersfield for vets with TBI. The closest services are in Los Angeles. Critics say awareness is improving within the system. Lawmakers are taking steps to improve screening for TBI. Bakersfield congressman Kevin McCarthy is co-sponsoring a bill that would require the D.O.D. to screen every soldier and marine, before they come home from combat, and after. "Currently their screening is just a questionnaire when they're leaving," said McCarthy. "One thing you gotta remember is that when you've been on two or three tours of duty, you don't want to be screened. You want to go home. What this asks is for a face-to-face
screening for anyone who's been in combat, before they leave and then every six months for two years." That's because for many vets, neurological problems don't surface right away. Page 4 "But if we can treat that symptom early, we can correct the problem," said McCarthy. "But if it doesn't get treated, it becomes a long-term disability." "Not all wounds you get in war leave scars," said Browning. "Sometimes they're a little deeper." Besides ramped up screening of our war vets, critics of the current system say the Veterans Administration needs to "outsource" some of its services to the private sector, to better treat combat vets who go home to rural areas of the country where the closest V.A. clinic is hundreds of miles away. That, they say, is another issue congress should be looking at. What can happen when a TBI victim, injured in the War on Terror, has full access to the best acute and post-acute medical rehabilitation the system has to offer? It's been ten years since John Kerchner suffered a traumatic brain injury after crashing his motorcycle. He's had four years of intensive medical rehabilitation at Bakersfield's Centre for Neuro Skills, and he's not fully recovered yet. "They've just done a miracle with John," said John's wife Olivia, "with his cognitive skills and everything. You look into his face, there's life there." It's a long road to travel, and experts say, medical rehabilitation is the only answer. And it's expensive. Traumatic brain injuries vary in their severity. On one end of the spectrum - concussions, also referred to as closed-in head injuries which can cause a variety of neurological problems. On the other end, severely disabling head wounds that reduce the victim to an infantile state of function and dependence. ABC News anchor Bob Woodruff was seriously wounded by a roadside bomb in 2006 while covering the war in Iraq. Five weeks later, Woodruff awoke from his medically-induced coma. He had access to the best medical and rehabilitative care available. And ABC spared no expense to help Woodruff get back to work. Today, Woodruff is reporting full time. At a recent legislative hearing in Sacramento, Dave Woodruff testified that his brother is lucky. Among TBI victims, he is the exception. "He's the best example of getting all the care that you could possibly get and the result is what you see every night on your television," said Dave. TBI is the signature injury from the War on Terror. In increasing numbers, combat veterans are coming home with hidden wounds. "At least 90% of them, it's estimated, are going to get a concussion or some form of TBI when they get out. And we just owe it to these guys to give them the best care possible," said Dave. But once they leave the hospital, few veterans receive the quality care afforded to Bob Woodruff. Especially those who go back home to rural America, where they have no easy access to medical rehabilitation. That's why Dave Woodruff and his brother started the Bob Woodruff Foundation. "The acute care part of it will be taken care of by the Veterans Administration, by the military," said Woodruff. "But when it comes to re-integrating these guys back into society, that's where there's a tremendous need. That's why we're raising money so we can help these guys out." But it's not just the combat veteran who needs help. Family members of TBI victims coming home from the war also need support. That's why Russ Sempell of Bakersfield founded Frontline NAMI, a chapter of the National Alliance on Mental Illness. "The V.A. serves the vets. But no one serves the families," said Sempell. And to that end, Frontline NAMI provides education, support and advocacy services to combat vets and their families as they struggle to deal with the symptoms of TBI. "These are invisible wounds," said Sempell. "These aren't amputees. These are our loved ones who have brain illnesses and brain disorders, and Frontline is there to help educate families on what to look for." Advocates say while the military is becoming more aware of the prevalence of TBI among combat vets, there's room for improvement in the screening and treatment of these hidden wounds. Mike Penny is a supervisor for the Kern County Veterans Services Office. "The thing that worries you the most? The long term," said Penny. "Even the V.A. will admit they don't know what will happen to a vet 10, 20, 30 years down the road. Right now, we can treat them for their condition and the symptoms they're exhibiting right now. But what happens if they start getting dementia at age 30. We just don't know." Advocates say left untreated, or under-treated, traumatic brain injuries can lead to accelerated onset of Alzheimer's and Parkinson's Disease. In the worst cases, TBI can result in severe behavioral dysfunction, medical indigence, homelessness, even incarceration. If you would like more information on support services for TBI victims, here are a couple of links you can access. California Brain Injury Association - 661-872-4903 Frontline NAMI - 661-303-1416 Wounded Heroes Fund - 661-324-7453 BIAUSA.ORG Bob Woodruff Foundation
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