Navigating resources difficult for brain injury patients in Oregon

According to the Oregon Health Authority, more than 13,500 Oregonians suffered a brain injury in 2020. But advocates say the number of people living with the chronic effects of those injuries is much higher. The long-term effects of a brain injury can range from confusion and short-term memory loss to depression, anger issues and lack of impulse control. Depending on the severity of the injury, patients may need access to things like employment and housing assistance in addition to medical and therapeutic services.

Oregon is one of 11 states that doesn’t have an established office to coordinate those services and help patients and their caregivers navigate the system. As Willamette Week reported recently, the state also lacks sufficient rehab beds for brain injury patients.

Joining us is David Kracke, Oregon’s Brain Injury Advocate/Coordinator. We talk with him about support services for brain injury patients and their loved ones and efforts to coordinate those services in the state.

The following transcript was created by a computer and edited by a volunteer:

Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. According to the Oregon Health Authority, more than 13,000 Oregonians suffered brain injuries in 2020. But advocates say the number of people living with the chronic effects of these injuries is much, much higher and those effects can be severe. Meanwhile, Oregon is one of just 11 states that doesn’t have an established office to coordinate brain injury services or help patients and their caregivers navigate the system. Oregon does have a federally funded Brain Injury Advocate and Coordinator. His name is David Kracke and he joins us now. Welcome back to Think Out Loud.

David Kracke: Thank you very much, Dave. It’s a pleasure to be here.

Miller: Can you give us a sense for what falls under this, what seems to be a pretty big umbrella of brain injuries or traumatic brain injuries?

Kracke: Well sure, in fact, we’ve kind of shifted away from using the word traumatic to describe brain injuries because brain injuries are caused by so many diverse sets of circumstances. Traumatic brain injuries are pretty well known. They’re injuries that a person will suffer from a fall from a motor vehicle collision, from a sports accident, whatever it might be. Acquired brain injuries might result from drowning, perhaps from strangulation, which we see a lot with intimate partner violence, domestic violence. Then we have disease processes and processes such as stroke, Alzheimers, Parkinsons.

Miller: I mentioned the data, the number from the Oregon Health Authority from, a couple of years ago now. At least 13,000 brain injuries that year. Is that a pretty common number? In any given year recently, what do they look like?

Kracke: That’s a that’s an interesting number because those are the number of people that the state epidemiologist found that entered the medical system through either the emergency room or inpatient hospital care. It did not include people that, for instance, went to their primary care physician, people who went to urgent care, Zoom care or unfortunately people who just didn’t seek medical care.

Miller: There’s also another question of how good any of those professionals now are at identifying and diagnosing brain injury. So even if someone does go, say to the ER or is an inpatient, what are the chances that their brain injury, if they had one, is actually going to be identified?

Kracke: That is another excellent question in an area that really does need some improvement. That being said, there are some wonderful medical providers, therapy providers who thoroughly understand brain injury. I work with colleagues up at Oregon Health Sciences University, my colleagues down at the Center on Brain Injury Research and Training at the University of Oregon are all experts on brain injury and identification. That being said, I hear stories, anecdotally, of people who go in to seek help for a brain injury and are essentially ignored or it’s not documented. This can start as early as the first responders and can go all throughout care for various other conditions.

Miller: What might someone say to those first responders? I mean, because I’m wondering if people are necessarily aware that they’ve had a brain injury based on the nature of this injury, isn’t it very possible that people wouldn’t even realize it?

Kracke: It is. And, for instance, when first responders arrive at the scene of a car collision, they might assess whether or not there was a loss of consciousness by asking the person involved in the collision, did you lose consciousness? That’s akin to asking that person, “tell me what you don’t remember?” We are recommending that they employ the two part question that has been adopted by the Department of Defense. What’s the last thing you remember before the injury? What’s the next thing you remember after the injury? And then, in that inquiry, they will find missing time. They can better assess whether or not there was in fact a loss of consciousness. I also want to be clear, loss of consciousness is not required for someone to sustain a brain injury.

Miller: Nor is it evidence of a brain injury, I suppose.

Kracke: Loss of consciousness is considered evidence of a brain injury.

Miller: So if you lose consciousness, by definition, you suffered an injury to your brain?

Kracke: Correct.

Miller: How likely is it that somebody who does suffer from some kind of brain injury is going to have repercussions that are prolonged?

Kracke: Well, the statistics show that for a person who suffers their first mild traumatic brain injury and the nomenclature within the medical system is mild, moderate and severe. I, personally, really don’t like the word “mild” because I don’t believe there’s anything such as a mild brain injury, that just doesn’t make sense to me. But what they are likely to experience at that point is 85-86% of those first time mild traumatic brain injury suffers, the person who gets a concussion will recover. Now you might say, “well that’s a huge recovery rate.” But what that does is it leaves 14% of those people with long term chronic effects. For moderate and severe, it’s pretty much guaranteed.

Miller: And it seems like one of the key points you’re mentioning there is for the first time. If you have, say, a second concussion, then the results are going to be more severe?

Kracke: That is correct. That’s what the medical literature shows. I do want to point out that what I focus on here is evidence based practice. This is what Siebert down at the U of O is so good at. So we’re not just speaking, we’re actually talking about what the science demonstrates.

Miller: So what are the potential long term effects, for the 14% or so, for those first time mild injuries and and then, maybe more likely for more severe injuries? What kinds of long term effects do people have to deal with?

Kracke: We call it the constellation of symptoms. There’s a state kind of saying within the brain injury community, “if you’ve seen one brain injury, you’ve seen one brain injury.” It affects executive function, it affects cognitive impairment or cognitive ability, short term, long term memory, vision problems, auditory or hearing problems, across the board. Many, many others.

Miller: What kinds of support services are available and most helpful for this wide constellation?

Kracke: I like to think of the support services as being a pie. And there are various slices from that pie. The first one that most people automatically go to are the medical and therapeutic services that are available. And those are absolutely critical and really, really important. Beyond that though, people that suffer brain injury need help with employment, education, social services. There is a huge component of mental health and behavioral health issues. That can lead to housing insecurity, legal representation, transportation issues. One of the most important places is support groups. If you are talking to a peer who has a brain injury and understands what you’ve gone through, you’re much more comfortable recognizing that that person understands, volunteering, getting them back engaged with life, life skill development, assistive technology, many others.

Miller: What about supporters or or caregivers of people who’ve had brain injuries? Are there specific groups for them or specific help that actually has been organized to help the helpers?

Kracke: You’re getting into respite care and respite care is a really important factor to recognize when a person suffers a brain injury. First of all, it’s typically an immediate injury. If you leave the house in the morning, you come back and you have a brain injury. It’s that sudden, especially with the traumatic brain injuries.

What we really don’t recognize as well is that that person needs care, needs support and typically that’s a 24/7 job and it typically falls on family members, loved ones, really good friends and the like. If those people providing respite care don’t get a break, their lives are equally as affected. First of all, they are almost equally as affected as the person with a brain injury, but they need a break as well. We’re working with the state to try to get a waiver through the Medicaid/Medicare system to allow compensation for respite care. And otherwise, there are those support groups that can offer that as well.

Miller: Willamette Week had a recent cover article that was about a number of things, but among them, it noted that Oregon ranks 49th per capita in the number of inpatient rehab facility beds, ahead of only Alaska. What does that mean for patients and for their families?

Kracke: Well, first of all, it means that for the acute situation where a person needs immediate care, they might run the risk of not having a bed in their home state, in their home city, that is accessible, that can provide them with that more advanced care that they need at that point. You saw that in the article in Willamette Week with the story of David Nichols and his family, how they had to go to Colorado to Craig Hospital to obtain that long term acute care.

But what it also means is that outcomes are not going to be as good and you’re gonna be dealing with more chronic problems as a result. And so then you’re looking down the road at chronicity, which does lead into housing insecurity, food insecurity, other issues.

Miller: Over the last few years, when some of the groups that run Oregon’s existing inpatient rehab facilities [have] been arguing against the need for new rehab beds or more rehab beds, they pointed to the number of skilled nursing facilities as part of the reason why they say in Oregon, “we’re doing fine.” What’s your response to that? How are these two kinds of facilities different with respect to rehab from brain injuries?

Kracke: Well, as Oregon’s Brain Injury Advocate Coordinator, my job is to advocate for people with brain injury. I want those folks with brain injury to have the best possible care. And I don’t think there’s any question that you’re going to get better care at an acute rehab facility that is geared toward brain injury than you will at a skilled nursing home or another, less equipped facility.

Miller: You’ve used the word “housing insecurity” a couple times here, most recently we’re talking about chronicity, I guess the percentage or chance of longer term issues related to these injuries. What do you see as the societal repercussions of untreated or poorly treated brain injuries?

Kracke: Well again, I’m going to fall back on some statistics that are staggering. You have evidence that upwards of 50, 60, even 70%, in some studies of people who experience homelessness have suffered a brain injury and most of those brain injuries predate their homelessness. With veterans with brain injury who are homeless, it’s even higher. It’s up to 94%, is what one study represents. So if we don’t treat these brain injuries and the condition becomes chronic, it becomes part of their world. Their ability to hold a job is a lot less, income is lowered, eviction can’t be far behind, homelessness results.

Miller: You helped lead the charge, a number of years ago now, something like a decade ago, for more awareness of brain injuries, especially in scholastic sports. What were you pushing for then?

Kracke: In 2009, Oregon became the first state to enact the nation’s first youth return to play after a concussion law, return to play law. We were hoping at that point to avoid the multiple concussions, what at the time was known as second impact syndrome, which can lead to this horrible neural cognitive decline in a person who suffers a concussion before they have healed from that first concussion. So we were hoping, and evidence has shown, that we were there to help our young athletes, making sure that they had as much cognitive ability when they left school as when they entered, before they started participating in sports and got that first concussion.

Miller: What has actually happened? Are coaches and umpires and athletic directors following the guidelines and making sure that young people can safely return to their soccer game or lacrosse or football or whatever?

Kracke: In 2019, the Center on Brain Injury Research and Training conducted a survey across the state along with other folks including athletic trainers, to find out how well implemented and adopted Max’s Law was. We were so pleased to find that the adoption rate for Max’s Law was up to 97%, in some cases pushing 100%, meaning it had become a fabric of youth sports. All the coaches in the school system were aware of it, they were receiving their concussion education annually and most importantly, they were following the removal guidelines and the return to play guidelines set out in that law.

Miller: Has that led to a decrease in serious brain injuries?

Kracke: Paradoxically, it’s actually led to an increase in identification of concussions and that may seem, “oh, well, what, has it caused more concussions?” No, it means that more concussions have been recognized.

Miller: The concussions that you’re assuming had been happening, happening all along, but society wasn’t paying attention to them?

Kracke: The mentality before 2009 in Oregon and across the country and unfortunately still across the country, in some places is, “rub some dirt in it, get back out there.”

Miller: “It is just a hit to the head, kid.”

Kracke: “You just got your bell rung” and in fact, it was a traumatic brain injury.

Miller: I mean, to what extent do you think that change is permeating upward? Not just 13 year olds or 17 year olds playing sports, but society wide. Do you see a sea change?

Kracke: I have. As you mentioned, I’ve been doing this for a long time, as have many, many people in Oregon and elsewhere. It’s been a wonderful movement that started essentially back in the early 2000s. In 2009, when we passed Max’s Law, that was the year that the NFL came out with their infamous “football doesn’t cause concussions” memo. These days, when you watch an NFL game, the concussion protocol is in place. There’s huge fines for targeting, you see instances of concussion to the quarterback, recently, this past season, who suffered a brain injury on the field and people saw it. There is definitely an increased awareness.

Miller: Do you watch football?

Kracke: I do, yeah.

Miller: I mean, I’m just curious. It seems like brain injuries are, as we know, an inherent danger in a game like professional football or college football, high level football where gigantic, strong, fast people are running into each other. What goes through your mind when you watch it? I ask this because plenty of people have stopped watching it because of the clarity of our awareness about brain injuries. They can’t stomach it anymore.

Kracke: And I get that and quite frankly, I completely appreciate that. I watch it with a critical eye. I was at a high school football game not too long ago, A kid was concussed on the field. I was watching what happened at that point, he was brought over to the sideline. He was assessed by the athletic trainer. The athletic trainer said he’s concussed, [and] he was removed from the play.

Coincidentally, that second half of that game, a cheerleader fell on the track. She was performing a cheer from one of those elevated cheers. She went through the same protocol and was removed from her cheerleading for that game. I don’t know what happened. I didn’t follow up with either of those players, but I saw Max’s Law working. I watch it to see how the game has changed.

I was recently at a flag football tournament for kids ages 7 to 14. That’s what we should be doing with our kids who are so young, whose brains, especially the young male brain, are in such a rapid development phase. We should not be bashing them repetitively even if those repetitive hits are subconcussive, meaning they don’t result in concussions. But we should in fact be watching and hopefully evolving the game as we move forward. And that’s why I watch it.

Miller: You are advocating right now for a bill in the legislature intended to address some of the organizational or navigational issues that I mentioned at the very beginning. What would Senate Bill 420 do?

Kracke: Senate Bill 420 would establish an Office of Brain Injury Resource Navigation within the Department of Human Services in the state of Oregon. It would finally provide people with brain injury with a central place where they could access information about services and support that a person-centered, geographically relevant, and equitable, everything including for instance, bilingual or available in languages other than English. It would provide them with direction.

Currently, the support and services that are out there are siloed, they’re caught, trapped in mazes, it’s hard to find them if you don’t have a brain injury. When you throw a brain injury into the mix, it’s nearly impossible. This would give a central location where people could go for that information, not just information, but also actually meeting with a navigator, a real person. Someone who not only would provide a warm handoff to those services but would also provide interval follow up connection and communication.

Miller: Does that kind of navigation center exist for people with diabetes or heart disease? I mean, there are other really serious society-wide health issues that have gigantic consequences that are also complicated.

Kracke: That’s right. And yes, there are programs for that. There was a comment that was made, “we need to focus on the availability of services and not necessarily the navigation of services.” Make the services better, not the navigation of those services better. I think that providing navigation makes those services better.

Miller: David Kracke, thanks very much for coming in.

Kracke: Thank you very much.

Miller: David Kracke is Oregon’s Brain Injury Advocate and Coordinator.

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