The Critical Link: CHRs and Traumatic Brain Injury in Indian Country

This documentary presentation was created to educate Native American Health Representatives about TBI and to assist in its identification among members of their tribes.

New Mexico's Aging and Long-Term Services Department with funding from the State of NM and the US Health Resources and Service Administration. Used with permission.

Transcript of this video.

[Traumatic Brain Injury-Awareness Training for Community Health Representatives] It's really hard to identify someone with a traumatic brain injury. I think that CHRs are just in a prime position to be able to identify TBIs that have been unseen, undiagnosed. In Native Americans, though, one of the things that's really becoming apparent is the extremely high incidents of head injury. What people in the field are seeing, we think it's about 2 to 1 from Native Americans to the general U.S. population. Even with those staggering and very disturbing numbers, we're still probably underestimating. Our CHRs are very community-based and very grassroots. What they need to know are what are the exact signs of TBI, what are possible signs of TBI, understand the importance of reporting to the Indian Health Service. Who better than people that are out there every day and see the same people all the time and they know them and they have their respect and they can trust; they have their trust. So who better than our CHRs? [♪ drums, chantng ♪] [The Critical Link-CHRs & Traumatic Brain Injury in Indian Country] [Narrator] The Centers for Disease Control and Prevention estimate that 1.3 million Americans a year sustain a traumatic brain injury, or TBI, which may be mild, moderate, or severe. Current CDC estimates indicate there are as many as 3.2 million people in this country who have a documented, long-standing problem associated with a traumatic brain injury, and these are the known cases. In Indian country, it is believed that reported TBIs are significantly lower than the rate of actual occurrences. A variety of factors prevent the accurate documentation of traumatic brain injury in Indian country. These include geographical and/or cultural isolation, reduced access to healthcare, or stigma associated with accessing western medicine, and failure of medical professionals to accurately document ethnicity of American Indians and Alaska Natives. Even when TBI diagnosed patients leave a hospital and return to their homes on reservations, they may not receive patient education or followup care. The most important link in ensuring that traumatic brain injuries in Indian Country are not overlooked, are the community health representatives serving tribes, pueblos, reservations, and the Indian Health Service. Awareness of TBI can dramatically impact outcomes of individuals and families in your communities. [TBI Among American Indians and Alaska Natives-Traumatic Brain Injury in Indian Country] [DJ Eagle Bear Vanas-Author -Motivational Speaker-Native Discovery Inc.] One of the concepts that all tribes I've worked with over the last 15 years hold in common is a sense of generosity, a sense of building a strong community by looking out for everyone, from our youngest child to our oldest elder. That's where our wisdom is kept. So it's really important that all tribes, when we come together at the end of the day, really focus on the common core values that we have, and I've found that we have much more in common than we have different, regardless of where our tribes are located. One of the most important is a concept of health, keeping people healthy from the inside out. The commonality with brain injury among indigenous peoples is that if you live on a reservation and you go through Indian Health Service, it takes, many times, up to even be up to 8 years to even be diagnosed. There are a lot of native people that have brain injuries that are not diagnosed, and it's because of lack of awareness. It's because of the shortage of doctors. It's because the shortage of money. They not only affect the person that has the injury, but also the family and the extended family. [Evelyn Kimpel-Co-chair Indigenous People's Brain Injury Association] Because usually that individual stays in the home, so it's just kind of a ripple effect. It affects the parents, the siblings, the cousins, where they all try to get together to help that individual. [Carlos Jose Garza-Acquired TBI in 1984] I ran into a car. I ran into a car; that's why I wrecked a motorcycle. I had brain damage because of it. [Karen Duboise-Son Acquired 2 TBIs in 2007] My son was 31 when he sustained his brain injury/trauma. The incident that occurred was in February of '07. He was in an assault. A young boy beat him up. Six months after that, he got in a car wreck. He ran into three horses. He received another brain trauma on this side, here. I think it was 1995. That's when it happened. [Glen Lowley, Jr.-Acquired TBI in 1995] I got in an accident. I don't know if I was driving or not, but I was with three other guys. [Defining TBI-Traumatic Brain Injury in Indian Country] A traumatic brain injury is an injury to the brain that results from, basically, the brain being rattled around inside the skull. [James F. Malec, PhD, ABPP] And this can happen when you get hit very hard by something or you hit something very hard, like you fly out of your automobile and you hit a tree. It can also happen just from coming to a sudden stop. So for instance, if you have a bucket of water and you go like this, the water keeps going. Well, if you're in a car going 80 miles an hour and you hit an embankment, your brain keeps on going. Traumatic brain injury is a really broad term. [Deborah M. Little, PhD] All we use it to indicate is an insult to the brain, which doesn't have to be direct, that results in an altered state of consciousness. That altered state of consciousness doesn't need to be a loss of consciousness. It can be a period of confusion. It can be a period of some immediate memory loss. And that's probably one of the big challenges in treating this is it's not just people who lose consciousness that have a head injury. So that's our broad working definition, is any insult to the brain that results in an altered state of consciousness. When you talk to your clients or the community about traumatic brain injury, you might want to stay more descriptive as to what happens. [Margaret Moss, PhD, RN, JD] So for instance, Grandpa fell, and now he is not remembering. Now he is confused. Now he has a lot of emotions that he didn't have before. Sometimes description is better than definition. We look at traumatic brain injuries as something that happens to our bodies, to our brain, that affects us, and it affects the way we were, the way we thought--you're thought process, the work that you could do, the relationships that you could have. And no two brain injuries are alike. [The Causes & Incidence of TBI Among American Indians/Alaska Natives] [Narrator] Motor vehicle crashes, falls, firearm use, suicide attempts, military service, sports injuries, domestic abuse, and other assaults are common causes of TBI in American Indians and Alaska Natives. TBIs can be caused by rapid exceleration, deceleration, and rotational forces applied to the brain or by penetrating injuries that pierce the skull. The most common TBIs are closed head injuries, or concussions, which may or may not be evident from an individual's outward appearance. CDC statistics indicate that motor vehicle related deaths are twice as high among American Indians and Alaska Natives than the general population. The same problems that you have in the general population are sometimes exacerbated in a rural setting. [Molly E. Patton, MPH, REHS] And most of our reservations are on rural settings. We have a problem with fencing; we have a problem with livestock being on the roads. We don't have the quality of roads in some cases that you might find in a city, and so the problems that you see associated with rural settings and rural roads are the same as we get on reservations. Alcoholism is listed high under the problems as compared to the dominant culture. I think it's 300 percent higher. Substance abuse has become rampant, especially in the last few decades around methamphetamine use. It's one of the reasons we think that accidents are so high. You have long distances to travel, you have impaired thinking, and together they result in accidents and, of course, opportunity for acquiring TBI. The national numbers tell us that incidents among American Indians is about twice as high as it is among non-Natives. And just visiting a lot of different communities, meeting people as brain injuries occur, and interest in support groups, I would say those numbers are probably conservative. So within TBI, there are also two other populations who are in extremely high risk for a TBI that results in disability. Those include people over the age of 65 or 70 and those under the age of about 14. Within each of those populations, the most common cause of head injury is a fall, whether it's a fall as a result of being pushed, which is very common in children, or whether it's a fall as a result of a change in balance and a loss of footing, which is very common in the elderly. They might not think that fall in the elderly would result in TBI. They might just be looking for hip. Cognitive loss might be seen as their aging, and so forth. But to have a real understanding of what TBI is and some actual training along with their basic life support and first responder training, would go along way to identifying and helping and maybe prevent TBI. Children, what we're seeing as they grow up, they may have had an injury when they were younger. They may have fallen off the chicken coop, or they may have been bucked off a horse or kicked by a horse. At the time, they think the child is fine, but the brain injury shows up later where it might be misdiagnosed as a different disability when it's really brain injury related. I think in children, a head injury should probably be a triggering incident to have a real evaluation by somebody who's trained to evaluate all aspects of their cognition and to watch them for things like developmental delays before the brain is no longer plastic and stops bouncing back. [Darryl Hall] We had a guy get bucked off a horse and his family found him just kind of wandering around on the prairie. They took him home, and the first thing they did was they called the local CHR and they went over and checked him out. They said that they thought that this person had a head injury, and that the family should get him to the clinic right away. And the family didn't think there was anything wrong with the guy, but the CHR said, "Well, I'll take him then." They shipped him off to Bismark, and they did surgery on him over there. But he turned out okay. It was due to the CHR insisting that this person go to a hospital. I think the CHRs are in a unique position to see things. They see things right away when they happen. They're happening in their community, and they have a way of communicating with IHS at large. If CHRs did know what to look for, they could be the first line of tracking those people that had left the hospital with this diagnosis, be able to track them on a regular basis every month, or whatever their usual work scope is, and be able to report back to Indian Health Service or given a list of other resources from the state and other traumatic brain injury associations. [Common Symptoms of TBI and its effects-Traumatic Brain Injury in Indian County] Well, there are a number of symptoms that can be the result of a mild, traumatic brain injury or a concussion, and I'm using those terms interchangeably. There are a number of physical symptoms, the most common being things like fatigue, lethargy, headache,sensitivity to light or sound. There may be changes in appetite, maybe changes in sexual behavior. Any of those things can result from a concussion. There's also a number of cognitive symptoms-- difficulty concentrating, difficulty remembering. Sometimes, and actually, I think, probably more often than we realize, higher level kind of thinking; problem solving, reasoning, multitasking can be affected. Although, in daily life people may often not recognize those. It may require a specialized neuropsychological evaluation to determine those. And then, people also experience emotional disruptions because of brain injury. The brain runs our emotions, too. Most commonly, after a concussion, people experience a little less control over their emotions. They may find that they're tearful more often, some symptoms of depression, possibly anxiety, increased irritability, I think, is a frequent symptom. Reduced tolerance, frustration, and stress is another frequent symptom. The rates of alcoholism, substance abuse, and depression, in general, are higher among American Indians and Alaska Natives than in the general population, and occurrence is even higher after TBI. They symptoms of mild TBI, or concussion, are likely to resolve fairly quickly after injury, but CHRs want to monitor the progress of symptoms and counsel patients to use extra caution until they do resolve. A small percentage of individuals who have sustained a concussion may experience symptoms that are more persistent and may require more ongoing management. In the case of more severe brain injuries, it is important for CHRs to note that they symptoms previously mentioned are likely to be more severe and may result in permanent impairments. More severe symptoms may also include changes in consciousness, such as coma or persistent vegetative state, seizures, paralysis, impaired ability to walk, significant loss of balance or coordination, diminished hand/eye coordination or motor control, ringing in the ears, hallucinations, loss of language function, impaired understanding or comprehension, or lack of inhibition and other socially inappropriate behaviors. In addition, research is showing that repeated concussions may increase the risk of Alzheimer's disease and other forms of dementia, or result in their early onset. You don't give up on the person with a head injury because it's their head injury that makes them act the way they act. If they notice their behaviors, such as quick-tempered and not being very patient or getting frustrated easily, that there is something not right, and they know that there's something not right. But a lot of times we say, "Oh, that's just how they are," or "That's just their personality." But if they do notice a change when they're working with, or they're driving someone somewhere, is to mention is to the Indian Health Services and say, "Something is going on with Joe. He's changing. His behavior has changed. I knew him when he was younger." And say, "Maybe there's something wrong there," and have it further looked into. The signs and symptoms of TBI can be subtle, and individuals might appear quite normal. Some symptoms are immediately apparent following injury, while others, due to secondary effects, may be delayed in their onset. In addition, individuals may not immediately appreciate that the symptoms they are experiencing are due to a concussion. This is particularly so with accidents, assaults, and suicide attempts, where the more life-threatening injuries receive the focus of attention. Even a mild injury can cause physical, cognitive, emotional, behavioral, and personality changes. If you suspect a brain injury, it's important to ask the questions that would establish the history. Did something happen? Do you remember? What happened when you go into that car accident? Do you remember what the doctor said to you? Did you hit your head? A lot of those questions because sometimes they'll remember their story to a point, but you've just got to bring it out of them by asking questions. Another complicating factor in identifying brain injury in Indian country is that there's no word for disability in the cultures of American Indians and Alaska Natives. This means that individuals with a brain injury. or any other limitation, would not be4 identified as having a disability. They may instead be identified by their characteristics, such as slow to learn or speaks with ignorance. Any changes in the characteristics in an individual in your tribe should lead you, as a CHR, to ask the individual and their relations the questions that might confirm a history of TBI. I had my vocal cords paralyzed because of it. My leg and arm where paralyzed because of it. They said I couldn't walk, but I'm walking. Talk about motivation. I might be motivated to walk, and I can walk. You get a bad memory because of it. They tell you one thing, and five seconds later they tell you, "Do you remember?" and you don't remember. And then I really don't know anything like my whole language and English. I really didn't know that. I had to relearn everything on my own. I can't do trigonometry anymore. I can't speak Spanish like I used to anymore. My son has improved, but he's not the same. He still mixes up his words when he talks. He gets frustrated that he can't pull out a word that he wants to say, so I just listen. And then when he does get it where he says a word that's wrong, we laugh about it now. Before, we wouldn't laugh because he would get upset. Now he laughs about it. I want to get out of my brain injury and live clearly, like where I was before. [There is direction-Traumatic Brain Injury in Indian Country] If a CHR should suspect that one of their clients has a traumatic brain injury, they should immediately report it to their supervisor. There's a chain of command, and the director of the CHRs would then have a meeting with the health board , which includes the doctors, the nurses, all of the medical people at the hospital level, as well as tribal. If documentation did occur, if these could be reported to CDC, then that data could start generating the educational services and traumatic brain injury services and maybe the use of the proper ICD-9 codes that might be miscoded or left out completely when the patient presents to the Indian Health Service. RPMS, which stands for Resource and Patient Management System, is the nationwide system that IHS uses for managing clinical information and monitoring patient outcomes. We know that Native American and Alaska Natives have under-representation in the terms of the numbers of brain injuries. What we really encourage people to do, and especially CHRs, is to make sure that those are coded in the RPMS system so that we're able to capture those. That's the 8540 ICD-9 code. And when those are entered correctly, then we're better able to track what's actually going on there. If we don't have good data, then we're not able to focus our very limited dollars and very limited resources on what can be effective. Brain injury may not be adequately addressed in emergency rooms, and milder TBIs may not show up on standard neural imaging, such as CT or MRI. Individuals diagnosed with, or suspected of having a traumatic brain injury, should be encouraged to undergo a detailed neuropsychological evaluation to identify changes in neurological function that impact cognition, personality, and behavior. As a CHR who identifies and serves individuals with traumatic brain injuries, it's important to educate yourself about TBI. It's important to understand the type of brain injury a community member has sustained and which areas of the brain have been impacted. This will better enable you to support and educate the person with the brain injury, their caregivers, family, and community members about the specific affects of TBI, and provide a buffer against the stress of symptoms that may come and go. It will also help in the identification of special accommodations that should be in place in the homes and communities of individuals diagnosed with TBI. There is training available. It's 101 Traumatic Brain Injury, and the state can offer that. If the state has a brain injury association, they can offer that. [Therese E. Yanan, JD] In our 2007 needs assessment, 89 percent of people who responded felt that it was very important that they receive training and information both on services and benefits that might help them function more independently. Ninety-two percent of people thought that it was very important to obtain help getting those services. I think community health representatives have a role in informing people about the services that are available to them, helping them work through the service delivery system, and frankly just providing some support sometimes and encouraging people to continue trying. The statistics are that if they've had a brain injury, they'll have another one, so the big thing is to understand that, as they're working with those individuals, to talk to them about happy times and to talk about some goals. What do you want to do? Who could we get to help you accomplish those goals? And to look at a real positive side of life because sometimes depression will sneak in with people with brain injuries. So just being positive and having expectations for them. Be patient because it's a slow thing to have brain damage. [Narrator] There are a number of ways in which CHRs can be useful in identifying and tracking TBI and assisting in its timely diagnosis and ongoing management. Observational and reporting skills are critical in identifying new or undiagnosed brain injuries, particularly among children or the elderly. Following up on loss of consciousness or changes in cognitive status will ensure that members of your community do not fall through the cracks. CHRs are the critical link in making sure that a person suspected of a brain injury receives a neuropsychological evaluation to establish a diagnosis of brain injury and ascertain the resulting deficits. Having a confirmed diagnosis of traumatic brain injury is the first step in accessing state brain injury services. They may also assist in facilitating neuroimaging, medical services, and cognitive rehabilitation. CHRs are important distribution channels for education about TBI services, resources and healthcare options. This DVD includes a menu selection on state brain injury services, as well as information on your local brain injury association. CHRs can reduce the personal and societal stress that is often associated with TBI by educating the individual with a brain injury, they're family, and tribal members about the impact of TBI and what to expect, promoting sensitivity and advocating for special accommodations. As cultural liaisons, CHRs can ensure follow up and coordinate western medical care with that specified by traditional native healers. This will encourage compatibility between the two approaches, where fasts, sweats, journeying, and long hours of prayer might impact physiological function, medications, and, of course, self-recovery. Finally, CHRs can promote prevention efforts by encouraging the use of seatbelts and safety helmets. More detailed training about TBI is available through your local brain injury association. [www.biaa.org or www.cdc.gov/ncipc/tbi/TBI.htm] Additional information about brain injury can be found by exploring the CDC website. [There is support-Traumatic Brain Injury in Indian Country] [Brain Injury Association of America (800) 444-6443 www.biaa.org www.biausa.org] There is support available to individuals with traumatic and other brain injuries and their families through the Brain Injury Association of America. Most states also have a state injury association. .[Indigenous Peoples Brain Injury Association (Dakota Center for Independent Living) (701) 222-3636] the Indigenous Peoples Brain Injury Association is a leading organization serving American Indians and Alaska Natives whose lives have been touched by brain injury. It was started initially with Diana Medicine Stone and Alta Bruce, and there were several other people. What they wanted to do was to provide some kind of organization and support for people who were identified that they had a traumatic brain injury. It's very important for the knowledge to be out there that if someone has traumatic brain injury, the steps to follow-- which is very important to let our native people know what they can do if they know a person with a traumatic brain injury--that there is help out there. I come into these conferences, this is my second one. The first one I came, I was so emotional because I listened to these people and I thought, "Geez, that's what I'm going through, too." But now it feels better. I feel a little better myself because I taught myself, I pulled up a lot of information, got information here when I came to the conference, and that has really helped me quite a bit. There's a lot of stress involved, so we want to try to provide them some support and also to find out what services are out there for them and also to find out how can we prevent them after we have seen and heard so many stories of survivors? [Narrator] Gatherings of American Indian and Alaska Native chapters of The State Brain Injury Associations and the Indigenous People's Brain Injury Association incorporate talking circles, prayer, and other culturally centered activities to promote the balancing of mental, emotional, physical, and spiritual aspects of well-being and their restoration to harmony. If you look at how far some of these folks have come from where they started, from when they had this traumatic brain injury, just look at how far they've come from that point. A lot of these people here are walking miracles. Since I went back to school, I started going back, walk around by myself because I want to be on my own because I want to be better and become better, like the way I was before. My son has been through a lot. He's a survivor, though. He's strong. The things that he's been through, I don't know if I could go through that. For him going through all this and his body going through all this and the changes that he had to adapt to. In order to help him adapt with the things that he's been through, we just go on with him and try to help out. Don't give up. A head injury isn't a forever thing. It may be there for a while, but it grows; it bets better. There's always hope. [Prevention is the only cure for brain injury] [Produced by Vista Media and New Mexico Aging & Long-Term Services Department] [Funded By Health Resources and Services Administration (HRSA)] [New Mexico Aging and Long-Term Sercvies Department] [Narrated by Conroy Chino] [Executive Producer Linda Wodarczyk Gillet, PhD] [Produced and Directed By Wayne Johnson] [Written By Linda Wodarczyk Gillet, PhD, Wayne Johnson] Project Supervision-Scott Pokorny, Auralie Tortorici, Doyle Smith, Marise McFadden] [Photography, Steve McCracken, Wayne Johnson] [Editing, Wayne Johnson and Steve McCracken] [HRSA TBI Grant Project Coordinator Linda Wodarczyk Gillet, PhD] [♪ music; chanting ♪]
Posted on BrainLine April 5, 2010.