Thank you all for joining us for another special event that ties into our TBI series. I'm Nori Bradley, a trauma program manager from Cox Health in Springfield, Missouri, and I'm happy to introduce Sheila Beck. Sheila currently works as the clinic operations coordinator for the UAMS IDHI Brain Injury Program, traveling across the state of Arkansas to provide education regarding resources available to brain injury survivors, their caregivers and other professionals. Sheila is a licensed physical therapist and has practiced in many different settings during her career. For most of those years, Sheila worked primarily with children and adults who had moderate to severe neurological issues. She is a certified brain injury trainer through the Brain Injury Association of America, living and working in rural areas all of her life. Sheila's primary philosophy is that where you live should not impact the quality of medical care you receive. Please help me in welcoming Sheila. Good morning, Nori, and I'm happy to be here. Today, I would like to talk to you about the TBI journey after rehab. As Nori said, I work for the UAMS Brain Injury Program and I am a licensed physical therapist and have been practicing as a clinician for 30 years and have been with the UAMS Brain Injury Program now for a little over one year and have learned a lot of information about the systems of care and we'll be sharing some of that with you today. This is just the educational statement. For our agenda today, the primary objective that I want to get across for this session is that the continuum of care is not linear. It can go in many different ways and that you will understand that the barriers that some of the individuals have to face who have survived a brain injury, that you will learn where to access resources at the federal and state levels, which was something that I have learned since I've been in my position here at UAMS and that you'll understand that the current national legislation and the need for further legislation, especially at the state levels, that there is a need for that to provide better systemic support for individuals who have survived a brain injury. We will kind of touch on all of those objectives today a little bit and then if there's questions at the end from Nori, I'll be happy to address those. So as I said, the continuum of care is not, it's not a straight path. It can go back and forth, up and down in all different types of ways. But typically what we would start with would be the acute care setting and then go into a acute rehabilitation care and then to post-acute is the typical path. But sometimes you start out in acute care and then the patient ends up in rehab, but they may end up having pneumonia, any kind of secondary medical conditions. So that will send them back into acute care. These back and forth can happen for years after having a brain injury. And it's not like if someone breaks their arm, you know, if your child breaks their arm, you have a pretty good idea. The family has a pretty good idea of what the care for that child's going to be. You know, you're gonna go see the doctor, they're gonna get a cast on, probably about eight weeks later, that cast is gonna come off. But for someone who's experienced a brain injury, the family is just in a constant state of not knowing what to expect. And our saying is, if you've seen one brain injury, you've seen one brain injury. Because they can present in many different ways. You know, you would hope that the patient would go from acute care into like an LTAC or SNF, a rehab, and then hopefully go home. Although some of them end up in a skilled nursing facility, long-term care, just depending on what their deficits were from the injury. And everybody wants to go home. When you're, everybody's excited to go home when you're in the hospital. Typically, when a patient leaves the hospital, especially from a rehab, they're gonna get a lot of home teaching. The family's gonna get, the caregivers will get a lot of home teaching. And they have so much information coming at them that it is really overwhelming for the family. So in Arkansas, UAMS Brain Injury Program, we provide a binder called the Arkansas Traumatic Brain Injury Resource Guide. It's a hard binder, it's something they can touch, something they can feel, something they can look at. I think most of them probably just toss it in with their stuff. And then when they get home, they can, and they think, now what? They have that binder to go back and look at and hopefully get resources. It has numbers for them to reach back out to us at the Brain Injury Program. It's got other resources in the community, but it's just something tangible that they have to help them as they begin their journey, because having a brain injury is a journey. And it's a journey that is gonna have detours and you have to embrace it. But we need to give our patients something that they can use on that journey to help them to navigate it. In Arkansas, we have the Arkansas Traumatic Brain Injury Registry, and on the slide you can see that there's actually a statute in our state that requires that all hospitals, attending physicians, public, private, or social agencies refer every Arkansas resident who has sustained a newly identified moderate to severe traumatic brain injury, the Arkansas Trauma Rehab Program, TBI Central Registry. And referrals are required within five days of diagnosing and identifying the injury as a TBI. And this is just for traumatic brain injury. This isn't, we're not getting data for a concussion or anything at this time. That's something that maybe in the future we would be able to do, but right now it's just for the traumatic brain injuries. The Arkansas Traumatic Brain Injury Registry is completely online. Referrals must be entered by a designated reporter at TBI, UAMS. The initial referral must be initiated within five days of diagnosis or identification of the TBI. The discharge referral must be initiated within five days of discharge. A brain injury must be reported to the TBI if the patient's Glasgow Coma Scale score is 12 or below for adult or 13 below for pediatric patients. And you do not report if the Glasgow Coma Scale is not an eligible score if the patient is not an Arkansas resident or the injury is not a result of the traumatic injury. So once the patient is diagnosed so once the referral has been made and comes into our registry, our team, and we have two social workers on our team, we have a registered nurse, myself representing the rehab world side of things. We have people, Danny, who's our program director, who has licensed EMT. We have a lot of experience and a lot of information on our team, but typically it's the social worker who will make a follow-up call within 30 days to the survivor or caregiver just to check in and see how they're doing. And then once that call has been made and we get their information, that information goes into our data collection base so that we can use that for research to help us advocate for different things. And also it helps if that person still has problems later on for us to go back, see what we talked to them about before, and to give them better answers and better help in the future. When they, barriers to discharge, Arkansas is a very rural state. A lot of our, a big barrier for us is transportation, and that's transportation for outpatient visits, transportation to follow-up medical care, I'm sorry, transportation is just, it's a barrier. And I think it's a barrier because we have a lot of people who are in the hospital, it's a barrier. And I think it's a barrier everywhere, but especially if you're in a rural area. Family support and help, it depends. Family dysfunction is reported in anywhere from 25 to 74% after brain injury. The injury itself is traumatic event that kind of sends everybody into a tailspin, is important that we as professional caregivers focus on the whole family and not just the survivor. Because if they have siblings, if it's a spouse, if they were the primary financial supporter for the family, all that is very traumatizing, not just for the person with the injury, but also for the family. It may be necessary to recommend a qualified mental health provider to help the families deal with stress and work through their issues. Are they gonna need legal help? Will they need to take a guardianship? There's just all kinds of legal matters that could possibly arise that they may need help with. Financial issues. Navigating the world of insurance is hard for everybody. In the best of circumstances, if something has happened, they may need to go on Medicaid. They may need some other form of insurance that the family will need help addressing. Or what if they don't have any kind of financial means at all? I mean, that's a whole different problem within itself. Another thing that I've found is when the person goes home, what equipment are they gonna need? And a lot of that also depends on what setting are they in? What does their home environment look like? A lot of times they will get that addressed through the rehab when they leave the rehab, but if the person's had, maybe had to be sent out of state for care and they're coming back into the state, then the equipment may have been purchased for them or acquired through a different means. And now that they're back in their home state, how do they get equipment? If their equipment starts to wear out with wear and tear, how are they gonna get it replenished? That sort of thing. So they need help addressing those needs. Are they gonna need a van with a lift? And if they so, where can they get that at? In Arkansas, we have a entity called ICANN, which is Increasing Capabilities Across Network. It's part of the Arkansas Rehab Services Program. They keep and store equipment, used equipment. If you have equipment at your home that you no longer need, you can call them and they will take it in. If you have a need for equipment, they keep an inventory list on their website that people are able to go access and to see if there's equipment there that they can use. Also, another barrier is for marginalized groups. So special circumstances for non-US citizens. All that can be a barrier and a specific barrier in its own way. So cultural concerns. Cultural background can impact perceptions of caregiver roles, reported caregiver stress, utilization of community services, relationship stability, employment outcomes after brain injury. You know, how are we going to address these things? One thing is you need to be willing as a healthcare provider to learn different cultures and to respect their beliefs and their belief system and their family interaction. It might not be how you are used to doing things, but it is how they accept things and how they see the world. And we have to be willing to learn that. We need to be willing to engage in dialogue with a family about their perceptions of brain injury, assess the family's willingness to seek help and their views on rehabilitation. I know in my history of treating people in different cultures, some cultures are very family-centered and family-focused and they would not consider sending their family member out for someone else to take care of. There are also maybe multi-generational housing where there's more than one generation in the home and maybe one more than family in the home. But all those is we need to learn their system and their beliefs and help them in the way that we can. You can present your ideas and interventions in a way that fits with the family's customs, values, and beliefs, and be open to learning new ways of being and interacting with others. I had a teacher one time who was a pretty smart guy. And I always remember him saying, you don't have to know everything. You just have to know where to find it. And I had always attributed that to him, but come to find out, they think that maybe Albert Einstein was the one that actually came up with that saying, but they're not sure. But whoever came up with it, it's very true. There's so much information out there, especially in the world of traumatic brain injury. There's no way that we can all know everything, but we do need to know where to go look and find the answers. So there are resources at, I kind of think of it in the, break it down into the federal and state level. The resources at the federal level, a good resource is NASHA, which is the National Association of State Head Injury Administrators, the Brain Injury Association of America, the Military Health Systems Traumatic Brain Injury Center of Excellence, Indian Health Service, the Tribal or Urban Indian Health Program, Administration for Community Living, the Model Systems Knowledge Translation Center. And I am very familiar with NASHA and the Brain Injury Association of America. I'm not so familiar with the other three. NASHA serves as the leading source of information and education for state employees who support public brain injury programs. So they are gonna work more with your state programs. They provide information regarding national trends, best practices, state contacts, the federal agencies. They provide contacts to state and national associations. They also provide and they help our state with technical assistance to state government. So they work very closely with us as far as our grants and that sort of thing and helping us to partner with other, through the federal programs. The Brain Injury Association of America is the nation's oldest brain injury advocacy program. It was founded by individuals who wanted to improve the quality of life for their family members and patients who have sustained brain injuries. And it's a voice, as a voice of the brain injury, we improve the quality of life of people affected by brain injury across our lifespan through advancing prevention, awareness, research, treatment, education, advocacy. I have acquired many years ago a certification, brain injury specialist certification or the CBIS. About a year and a half ago, I went ahead and did the CBIST, which is for trainers. The main benefit that I have received for being a part of this program is that it keeps, I have to get 10 hours of education continuing ed a year. And it helps me to stay abreast of the best practices, clinical practices of brain injury, the latest in research, that sort of thing. And it helped me to be a better clinician when I was still in the clinic. And it also helps me now to be able to provide better resources for the families that I come into contact with. You can go to their website and learn more about the certifications. I would highly recommend that if you are working with people who have survived a brain injury, and I mean from concussion on up, that this is a good association and good information for you to be aware of. The Military Health Systems Traumatic Brain Injury Center of Excellence offers a variety of educational information and resources to help service members, veterans, patients, and their families Learn about mild, moderate, and severe or penetrating TBI. This is just for the veterans and military. I think it's a good resource from what I have read and something that would be helpful if you're dealing with that population. Indian Health Service Tribal or Urban Indian Health Program. This is through the Department of Health and Human Services. It is responsible for providing federal health services to American Indians and Alaska natives. In Arkansas, we have a few communities that we could probably work through this program with. There may be other areas of the country, obviously, where this is going to be more beneficial. And then the Administration for Community Living Model Systems Knowledge Translation Center. Model systems are specialized programs for the care of people who have had spinal cord injury, traumatic brain injury, and burn injury. They pool information and conduct research intended to improve the long-term functional, vocational, cognitive, and quality of life outcomes individuals who have had these injuries. They're funded by the National Institute on Disability, Independent Living, and Rehab Research to conduct innovative and high-quality research, provide patient care, and offer other services to improve the health and overall quality of life for individuals with TBI, spinal cord injury, and brain and burn injuries. So, those are at the federal level. And then if you're coming down to the states to look at the resources at the state level, the Administration for Community Living, or ACL, is a big player there. So, if I'm looking at the federal level, which would be like maybe the top, the ACL is kind of the funnel down to the state, to the state level. They provide grants and things at the state level to help the state TBI programs. They were created around the fundamental principle that all people, regardless of age or disability, should be able to live independently and participate fully in their communities. So, they do a TBI Technical Assistance and Resource Center, the TARCS, which I know that we utilize that quite a bit at the UMS Brain Injury Program. They again help with the promote access to integrated coordinated services and supports for people who have sustained a TBI, their families and their caregivers. And then the TBI State Partnership Grant Program provides funding to help states increase access to services and supports for individuals with TBI throughout their lifetime. They have been a big part of what helps the UAMS Brain Injury Program go and grow. So, very, very good organization. So, finding local support in your state. Most states will have, there's the Brain Injury Association of America, and now they have the Brain Injury Association of Arkansas, of a lot of different states. So, it's now at the, they kind of merged where they had been different before, just recently they merged. So, that now that it's instead of the Brain Injury Alliance of Arkansas, it's the Brain Injury Association of Arkansas. And the good thing about the Brain Injury State Associations is that they can advocate, they can talk to legislators, they can do things that other entities can't do, like the UAMS Brain Injury Program. We are not allowed to do any kind of advocating or anything toward the legislation on our work time. So, this is a good, we do a lot of collaboration with the Brain Injury Association of Arkansas, as far as giving them information, and then they in turn are able to go do the advocating at the Capitol. CARF, which is the Commission on Accreditation of Rehabilitation Facilities, they held specific standards for brain injury programs. So, if you're looking for somewhere in the state to receive services, it's always good to look and see if they are CARF accredited. They do outpatient clinics, LTACs, home and community services, residential services, they will go in and accredit all of those to make sure they are meeting the standards of care. I did not know this, but in most states, if you dial 2-1-1, you will be connected to an information referral agency that has a database of social services programs in your state. So, that's a good way to find information. Also, look for independent living centers. Independent living centers can offer information about housing and community supports, and they are in most areas. You can look, like I said, our program is through an ACL grant program, so you can go look at the ACL grant programs for what's in your state, and it's the Traumatic Brain Injury State Partnership Program, and that can be found on the Administration for Community Living website. There are some pieces of legislation that have occurred through the years that have had impact on the funding that we get at the federal and state levels. One of these is actually a Supreme Court ruling called the Olmstead Decision of 1999 that utilizes Title II of the Americans with Disabilities Act, and it asserts that states administer their services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities. I think this actually came as a lawsuit. There were two women who went to, didn't want to have to live in a residential setting, institutional setting, and they went to receive services in their home, and the Supreme Court ruled in their favor, and so a lot of our community-based and home-based services came as a result of this decision. The Rehabilitation Act of 1973 set the foundation for the state vocational rehab system, a federal state-supported system of services that assist people with disabilities who are pursuing meaningful careers. This provides the state vocational rehabilitation services program provides grants to assist states in operating their statewide programs, and each, which is an integral part of statewide workforce development, and I know that workforce development is a big buzzword right now, especially for anybody who's receiving Medicaid, so this is a program that helps people to assist them in getting jobs and helps train them, especially if they've had some sort of disability. The Traumatic Brain Injury Act of 1996 is a law that acknowledges the incidence and prevalence of TBI nationally and set the stage for subsequent funding of surveillance research on TBI. This is probably the most single important piece of federal legislation for people with a brain injury. It gave authority for the CDC to establish projects to prevent and reduce the incidence of TBI, allowed the National Institutes of Health to award grants to conduct basic research, developing new methods, and established the Health Resources and Services Administration, which is now ACL, which we have just talked about, and as we said the ACL funds federal money to the states to improve the integration of services, established policy, and the procurement of financial support to bring about systemic change. So, all these things, pieces of legislation, have happened and has allowed the states to bring brain injury to the forefront and to provide services. We still need future legislation, I would say, in the states. I know in Arkansas we're working pretty hard to get some legislation passed to help people get services through their insurance without having a cap on rehabilitation services. You know, legislation regarding concussion to make it so that not only for when they return back to school, that they can receive the services that they need, even if their injury didn't happen in a AAA sports program. So, there's just some different things out there that we're looking at and that we're looking at as a nation that we're looking at. And hopefully that these will come to pass. So, brain injury is a chronic condition. It's not just an event. You know, we talked about how that in the past it's been perceived kind of as if you had a break in your arm, if you've broken your arm. You know, there's not a clear-cut path for someone with a brain injury. It's something that they have to live with for the rest of their life. The most important thing, a really important thing, is that in 2024, the Centers for Medicare and Medicaid Services recognized traumatic brain injury as a chronic health condition. And it has been added to the CMS's list of chronic conditions for chronic special needs, effective January 2025. So, that was just this year. We're hoping that this gives us all a platform to get more services for people who have had this injury and to better help educate our legislators and the people who are making decisions regarding our money as to the best practices and how best to use that. I would like to thank you for your time and attention today. And if there are any questions, I'll be happy to answer them. I think that was a great lecture. It really ties together the TBI series. And I do have a couple questions for you. One of which you kind of talked about how the state of Arkansas is unique in terms of having a centralized TBI registry. Is that something that for other organizations that don't have a state-led program, you could see them as adopting into their own institution or their own hospital? And if you do see that or have heard of it, what hurdles could someone anticipate if they were to adopt it into their own center? I'm not saying that it's not out there. I will say I have not heard of it. It really depends on the layout of your trauma system in the state. Like, I can speak toward Arkansas. We're very rural. We only have two real population centers, one in the Little Rock area and the other one in the northwest part of our state. I think it would be difficult for one hospital to manage all the information and the technology and all that that is required to keep a process running, especially all the updates. I'm not saying that it couldn't happen. I think it would be difficult. There's a lot of maintenance for the cost, the maintenance of our IT that we have to keep up with is pretty significant in that way. I'm not saying that it couldn't happen. I would say it'd be very difficult. Yeah, I definitely think we are unique being in southwest Missouri. So we're a part of Arkansas as well as Missouri as a trauma center. And we identified, you know, Arkansas has this fantastic resource, which was the binder you were describing, where it kind of talks them through in layman's terms, what is a TBI? As well as where is the injury to the brain actually on a map so that they can see that picture of the brain and see, oh, this is why this is affected, or this is why they're acting this way. And we love the resource for Arkansas patients. And then we came together and we're like, why don't we have a resource for Missouri patients. And it's something that we were very surprised to learn in terms of resource, being that it's that book, like I'm talking about, we reached out to our Department of Health for Missouri, and they actually create a similar TBI book, different in terms of resource within the book. But again, layman's terms kind of definitions of traumatic brain injury, what this looks like, what it's going to look like as they're progressing through. And so that's something that we found through the state of Missouri, and I'm hopeful that there's other states and hopefully those that are going to be watching this can reach out to their Department of Health and determine is there a resource that probably has not been tapped into yet? And if not, is it something that their own center can take on as a process improvement or a PI project and look at, hey, let's pull this over here, kind of follow the similar guidelines like you all do for your registry, you know, GCS less than 12, and diagnosis of a TBI. And those are easy reports that a registry can run from a trauma center. So looking at it from that point, is it something we can shuffle some resources to? But I agree is in terms of how robust Arkansas is, it is a very robust program and very, very beneficial to the patients that you do get to serve. Another question I had, do you have any strategies for staff that may become frustrated with the cultural or the psychosocial restraints a family or a patient may have? From experience, I can say that sometimes you have to step away for a little bit. And as a provider, I had to look at, was I the right person for that situation? And sometimes it was that I just had to regroup and try again. And sometimes it was that I was not the right person and that I needed to find someone else to step in. So, you know, never hesitate to step and ask. And our social workers do a great job. You know, I don't know that there has to be one designated person, you know, whether it be a social worker or a nurse manager or case manager or whatever. I don't know that it has to be one designated thing. But I think as a team, it helps to work as a team, whoever you're working with, and look at their, you know, would they be the better fit to deal with the family directly, and you provide the resource. Definitely, I think that's great advice in terms of stepping away and taking a moment for sure. The last question I do have, what resources, and this may be a very large question to take on, but to your knowledge, what resources are there for like unhoused community when they've sustained a brain injury of some sort or diagnosis? And then even if, you know, you don't know in terms of what resources are out there, what resources does your team lean on specifically? I assume it's going to differ state by state, but is there any recommendation on a position or a title someone might try to find within their own state in terms of helping provide resource for those patients? So let me understand your question. You're asking me about someone who has no housing. Is that the question? Correct. In our state, there are some of the larger hospitals that will, or in the rehabs, Baptist Rehab is one that comes to mind, that will provide, take charity cases. So we do have some relationships with different entities to help in that area. And in the past, from what I have learned from some of my team members is that especially for foreign nationals, we have a large Hispanic community in foreign nationals that they have gone to the Mexican consulate to get placement. So unfortunately, the answer to your question is there's not a good answer. And there's not a good answer, I don't think, anywhere that I'm aware of. But you just have to try to have open communication with the entities in your area and reach out and ask. And they may be willing to take some cases for charitable purposes, but also have communication with some of our federal programs like the Mexican consulate to help in that sort of situation. Yeah, unfortunately, a sticky situation there. And I kind of assumed we wouldn't have a clear resource to go to quite yet in the nation by state, but definitely something I think that is being raised, you know, attention is being raised in that area. So I want to thank you again for coming and appreciate your time and helping us kind of tie together the post acute placement of these patients and how to best serve our TBI population. Well, and I would, before I leave, I would just like to add two more things. Talking about the brain injury resource guidebook. Another thing that our team has done is that we will provide cards for some of our people that we deal with who've had a brain injury that says, I have had a brain injury. You know, and then that way, if they are in a situation, we've had good feedback, whether they've been in a situation with law enforcement or where they've been in a situation where they're standing in line at the grocery store and they're getting overwhelmed, that they can pull out that card and hand it to the person so they know what their situation is. So that's one thing. And then the second thing is, is that we're starting a peer mentors group, whereas someone who's had a TBI themselves and they go through a certification training process with us, they're able to go into the hospital and start talking to these families because they have lived experience. So I think we're going to see good results with that too. But that is just two things that I wanted to add to think about. Definitely. I think great additions to the end of this. And again, thank you for coming. Thank you.

Traumatic Brain Injury

Sheila Beck

Continuum of Care

Arkansas TBI Resources

Olmstead Decision

Cultural Considerations

Peer Mentor Program

Healthcare Collaboration