Jen Andrew:
Welcome to Amplify Together NC, a podcast by Disability Rights North Carolina. I'm your host, Jen Andrew, communications coordinator here at DRNC. Each episode will bring you conversations with disability advocates, experts, and everyday people making a difference. Together, we'll dive deep into disability rights, current issues and the power of community, one conversation at a time. Let's get started.
Did you know that nearly half of all Americans will experience at least one traumatic brain injury in their lifetime? A traumatic brain injury or TBI is an injury that affects how the brain works. TBIs range from mild like a concussion, to moderate or severe injuries that can cause long-term effects. Even mild TBIs can impact thinking, mood, memory, and daily functioning, while moderate or severe injuries may require long-term rehabilitation and support. TBIs are a major cause of death and disability in the United States, but are often unreported.
In today's episode, learn about the NC BRAINS Initiative, which stands for North Carolina Brain Resource and Injury Needs Screening, led by Disability Rights North Carolina. In our conversation, we talk about how this campaign works to improve brain injury identification, enhance provider education, and connect individuals to community-based services.

Desiree:
I was born with narcolepsy type 1, so naturally, I had the inclination for disability even though I was diagnosed later on in life, which is very common for those with narcolepsy. And I also sustained TBI very early on in my life and then subsequent TBIs later on as I grew older, so disability was very much ingrained into me just because of my lived experience, and I knew that I wanted to work in a space where I would help people as I grew older in high school and then in college and so on and so forth.
And I had a love for public service and social work. My background educationally is psychology, criminal justice, and conflict management. I have a concentration in international human rights advocacy, but I really particularly enjoy the area of disability rights because it bridges the area of my lived experience with my passion for public service in a very underrepresented and under-addressed area of our public sector that doesn't really get a lot of attention. So for me, disability rights work is that twofold thing that I mentioned. It's both personal and professional, and a lot of the times, I don't really know how to shut it off because if I shut one off, I'm essentially shutting off a part of myself.

Jen Andrew:
That makes a lot of sense. Thank you. Thank you for sharing that. So could you tell our audience a little bit more about the NC BRAINS program, what inspired its creation, and maybe a little bit about what your day-to-day work looks like?

Desiree:
Yeah, of course. So NC BRAINS is a campaign that I designed with the idea in mind to bring forth accessibility of brain injury, education, awareness, advocacy, and evidence-based tools to both providers and residents in North Carolina. Our campaign aims to facilitate advancements in provider education like trainings, materials, and address our need in North Carolina for brain injury identification methods. So that looks like screening for brain injury, and making sure that folks are getting connected to these community-based services that can help them with whatever symptoms that they might have. It came about after many years of trying to identify what were the needs and gaps in our state, and we had a survey done many years ago by a previous individual with DRNC who found that one of the biggest needs and gaps in North Carolina was that we don't have a robust way to identify people with brain injury, TBI and those with non-TBI.
And that survey analysis that they did back in 2020 or 2021 was a really good foundational start for us to really understand that we needed to get North Carolina on the map in terms of how can we increase screening methods or at least start the process? We also learned through our TBI justice initiative where we tried to do a pilot program, that we learned that before even establishing a pilot, we needed to establish education into a lot of the minds of providers, because brain injury is such a new concept for many people across the board in many community settings that the idea of establishing a pilot may be far beyond what is the time right now, whereas right now, we need more advocacy and education on the matter before we even establish a pilot. And so that's why we started a campaign to bring this type of advocacy into the hands of providers and residents, because when you bring this type of accessibility to this, to the hands of people, they're more likely to be able to have that awareness and knowledge and desire to learn more about it and spread the word.

Jen Andrew:
Thank you. Thank you. So it sounds like education is a key piece, and also, I am curious, how does NC BRAINS change the way North Carolina identifies and supports people with brain injuries? I hear you saying it's an emerging field and there is and was a gap in folks accessing screening, so how did people get identified in the past and how is NC BRAINS changing that?

Desiree:
So in the past, and still to current, Carolina doesn't have any robust consistent across the board method to screen for brain injury. Many entities, whether it be private or public education or hospitals or even governmental entities, can have screening tools so to speak, and those can be just one or two questions on head injuries or that could be part of their intake. That could be just a simple symptoms questionnaire of a couple of questions, but nothing that involves a full questionnaire on the history of someone's potential exposure to head injury. We don't really have across the board information on which areas in the state have what records of brain injury, so we don't really know how many brain injuries are in prisons, how many brain injuries are in schools, per se, how many brain injuries are in these adult care homes particularly, unless those are people who are coming in diagnosed, because it's not being formally screened during intake and then subsequently identified. People may get one or two questions on an intake form, like I said earlier.
And then you have the local management care entities, as we know, the LME/NCOs that upon intake, they might screen for some level of brain injury, which is just TBI. They don't screen for non-traumatic brain injury, and that's also very hit or miss because we don't really see the full spectrum of brain injury. We just see TBI and then whatever is reported to hospitals. So it's a very small amount of, quote-unquote, "reportings" we have and it's solely just TBI. We don't really know beyond TBI how many brain injuries are in our state, and those TBIs that we do have, it's only really in those spaces of those that are reported at hospitals, which we know many people don't go to hospitals after they experience a concussion or don't have access to medical care in rural places, and some people don't call the LME/NCOs for services, so there are a lot of people that are not being screened.
And I think for our program, our program provides not only evidence-based screeners, but it gives residents and providers the opportunity to screen people, but individuals can screen themselves from the comfort of their homes. So they don't have to call anyone if they don't want to. They can screen in the privacy of their own home and they can also request help if they need it, and I think it gives power back into the person so that they can make the decision on whether or not and how they screen.

Jen Andrew:
It sounds like there are some really evident gaps in screening right now, so could you tell us a little bit about maybe how NC BRAINS might change the care that folks get? Maybe a better way to say this is how might screening change the care of somebody with a brain injury?

Desiree:
I think that somebody who is being screened for brain injury, it can potentially change or improve the care that they have. Without me being a medical professional, I think it can definitely improve it in a variety of ways because the way our screener is set up, it goes into depth, asking about the history of lifetime exposure. So someone is being asked a variety of questions on TBI, like if they've had any type of hit on the head for any type of violent incident, fall, military service, law enforcement, if they have ever been involved in intimate partner violence, if they have ever been subject to any type of board. It tries to hit as much of the spectrum of TBI as possible, but then on the flip side, it also tries to hit the spectrum of brain injury that is of the non-traumatic side, so the quote unquote, "acquired brain injury" side.
It tries to look at all the different areas of where somebody could have had a lifetime exposure, the age where they were exposed, what symptoms of lack of memory, consciousness, which is really important for when we figure out if someone has had a lifetime history of exposure, and when was the last time they had exposure? So those are really important prudent questions when identifying because they're going to be helpful for a doctor or rehab therapist.
And then it asks for symptomology later on in the screener for cognition, behavioral health, mental health, communication, physical response. All of these things in symptomology are prudent because when someone takes these results to a doctor, a doctor sees how thorough this screener was and can see what are the current symptomology of this patient and what could potentially be the needs that they need to refer that person to? And when doctors are aware, even if they don't necessarily have the full scope of training on how to treat brain injury, they can at least see through an evidence-based screener all of the symptomology that somebody is experiencing and say, "Hey, somebody is showing issues with cognition, so maybe they need to go and get a neuropsychological evaluation."
If someone's having issues with mental health and potentially having some level of suicidal ideation, maybe they need to go see a behavioral health therapist or contact mental health immediately. If someone's having physical signs, maybe we need to address that in the moment. So I think it can significantly improve the healthcare that someone receives when doctors, neurologists, any primary care can see how thorough the screening is. And also, the screening itself provides to providers, both doctors and non-medical staff, a list on how to help work and collaborate with people that have brain injuries, because it provides education tip sheets to providers and says, "Hey, this person has issues with cognition. This person has issues with behavioral health. These are the recommendations we have, and these are all based out of the University of Denver to help you work with this individual." That can only improve the care that a person is receiving, when a provider is better equipped and aware with the tools to help a person.

Jen Andrew:
So it sounds like the screener will really identify people who might not even know that they have a brain injury, and that's so important because it connects them to appropriate medical care. So I'm curious, how do you engage with healthcare providers, educators, and first responders in this initiative?

Desiree:
We've had a lot of success with educators, school educators primarily. A lot of school educators are really interested in finding out how brain injury affects mental health in youth, which has been really helpful, because a lot of them are really curious about how this is affecting the youth as they're developing, especially those who either sustained a brain injury or those who have not, and could and have not been identified, which has been a great opportunity for education, both for educators but also so that when they're interacting with these children, as time goes on, they can be better equipped and aware.
For law enforcement, we haven't had as much opportunity to interact with them regarding this. It is definitely an area of a community that I really want to provide some level of training and crisis intervention training when it comes to brain injury. I would love to dive deep into and see how we can better support that community. And healthcare professionals, it's a similar thing like educators. We offer trainings as part of the program, so we offer trainings in a variety of different areas, so mental health, brain-injury in youth, brain-injury in substance use, and healthcare is one of those things where we haven't had as much interest in comparison to those from education and those from the substance use world. We've had some interest, but not as much. We've had a lot more interest from those in the nonprofit sector, working in grassroots organizations, serving those with justice involvement, intimate partner violence and substance use disorder.
Substance use disorder, interestingly enough, has been our biggest area of advocacy because I think a lot of organizations are starting to see the correlation between overdose and brain injury. I think there's a lot of overlap in a lot of these spaces.

Jen Andrew:
Yeah, that makes a lot of sense. Thank you. I'm thinking as you're talking, it sounds like there's a lot of misunderstandings, misconceptions that people hold. As a multiple TBI survivor yourself and also doing this work, what do you think maybe is the biggest misconception people have about brain injuries?

Desiree:
That they don't have one, that they could be immune to it. That's a very big misconception, but I think a lot of people where they've, for example, played contact sports like football, a lot of them assume that they could never have a brain injury because they think brain injury is a stereotypical thing that they see in the movies where somebody is in a coma. And while that is a brain injury, that is of the moderate to severe side of TBI, and a concussion is considered a brain injury and those are the most common. 75% of brain injuries are mild TBIs, otherwise known as concussions, and a lot of these types of brain injuries go undetected. I think the biggest misconception is that.

Jen Andrew:
That's super impactful. That's making me think, so many different directions we could go. It feels like awareness on so many levels is just really critical. On that note, what long-term changes do you hope NC BRAINS will bring to brain injury awareness in our state?

Desiree:
That's a great question. I think NC BRAINS is the start of giving options to the people, especially brain injury screenings, giving people access to brain injury screenings at the hands of the people. So I think that when we bring it to them in their hands, I think it's one of those things where even those North Carolinians who may not know of our program, that's okay because hopefully somebody will share it to them or hopefully the information will get to them. But those that do know or those who the information does get to, it's one of those things where I hope that this shows that when you give people access to this, you're giving them the tools and the ability to understand themselves, but to further advance the foundation for better care, not just for one person and not just for one community, but for an entire state.
Because brain injury is one of those conditions that transcends multiple communities. It goes through intimate partner violence, substance use disorder, justice involvement education. There are many people living and existing in all of these different spaces, sports, adults, children, you name it, that are living with brain injuries, identified and non-identified, that are existing and just going about their lives. And I think NC BRAINS is, I would hope, the start of giving us an understanding of when we give people that access, and even though this is the first year, and who's to say that this will be the last year? I'm not sure, I can't say for certain, but my hope is that it'll increase people's desire to want to know more.

Jen Andrew:
Yeah. So for listeners who might be wondering if they themselves or someone they love has a brain injury, what's the next step they should take with NC BRAINS?

Desiree:
That's a great question. So there's a couple of different things they can do. They can access our link to our page online and they can take a look at our page, read about the program, and if they're ready to start screening themselves, they can scroll down, all the way down to the page where it says Brain Injury Screening on a yellow backdrop page, and it says, subscriber name, DRNC and subscriber code 919, and then it says take the OBIS. And the listeners can click that and they can start screening.
Now, the screener is for those 13 and above, so anyone ages 13 and above can start screening. For those under 18, they'll need a guardian to consent to the consent form. I always also give the caveat, if individuals do not want to give a name when it asks you for a name, you don't have to. You can put an initial, you can put a pseudonym, you can put whatever you want. You don't have to put it. You just have to put something in the name, you don't have to put your real name. And if you don't want to put an email because you want to put your email privately, that's okay too.
I have a specific email for those who want to remain anonymous, and that email is BUI@ disabilityrights.org, and again, that's BUI@disabilityrights.org. Or folks can contact me via my office number which is 919-500-4462. That's 919-500-4462. They can call, and I'm happy to schedule a screening session with them or explain to them the program, and for providers that may be listening, I'm more than happy to schedule an informational session on the training options that we have. You can screen at any time, any place, on your phone, tablet, computer, and if you don't want to do it, I can do it over the phone with you, so there's a lot of flexibility here. And if you want a paper version, I can do it on the paper version too.

Jen Andrew:
Thank you. Thank you. That's really great. That's so helpful that there are so many options. I know that this is an initiative near and dear to your heart and I know that it's challenging to work in this space, so I'm wondering if you could share with our listeners, right now, how do you stay grounded and keep motivated during these times?

Desiree:
That's a good question. I have to remind myself why I do what I do and who I'm doing it for, and it's for people like myself, but also for people like the listeners. So I have to remind myself why I made a self-commitment to public service and why many of us who work at Disability Rights made that same commitment to public service and to disability rights. And when it comes to taking care of myself, to making sure that I can hold space when I need to hold space for others, and either their trauma or whatever it is that they're going through, because this job does require to hold space a lot. In my spare time, I do like to enjoy crafting puzzles. I also do like to... I'm a very big exercise person. I like to go running, even though I'm the slowest runner you can possibly think of, but that's okay.

Jen Andrew:
That's definitely okay. Yes, yes.

Desiree:
So there's just a variety of things. I think staying physically active is really important. When things are so difficult as they are in the outside world, I like to lose myself and just have some fun, just trying to do something new and running or at the gym or something.

Jen Andrew:
Those are all amazing options. I love it. I love to be outside also, so I get that. Thank you so much for sharing all of this really important and impactful information with me today, Desiree. Before we close out, is there anything I didn't ask you? Any final thoughts for our listeners?

Desiree:
No, I think you touched on a lot of things. I think the only thing that I would tell listeners is that we have about six months left on the screener program where folks can get screened, and our goal is to at least get one screener from each county. We are at about 22 counties and there's a hundred counties in North Carolina, so we are still quite a ways away of getting many more counties to join, to have representation from each county because each county matters. So if you can share this far and wide and get folks to screen, that would be great, and like I said, please feel free to call. And Jen, I don't know if you can include my email.

Jen Andrew:
Absolutely.

Desiree:
Wherever this podcast goes, I'm happy to receive emails and answer any questions or anything because this is something that's very important to me, so even if you don't think you need to get screened, please share this far and wide.

Jen Andrew:
Thank you. Yeah, we'll definitely have everything that we talked about in the show notes. Thank you so much. I really appreciate this conversation.

Desiree:
Thank you.

Jen Andrew:
That's it for today's episode of Amplify Together, NC. Thank you so much for joining us. If you enjoyed today's conversation, be sure to subscribe, leave a review, and share. You can find us on Instagram, Facebook, Blue Sky, LinkedIn, and YouTube. Let's keep the discussion going. Until next time, stay strong, stay connected, and keep advocating.