Inside Rehabilitation Counseling
Inside Rehabilitation Counseling
Epilepsy Awareness and People-First Programming with Dr. Courtney Dean, PhD, CRC, NCC
According to the World Health Organization, around 50 million people worldwide have epilepsy, making it one of the most common neurological disorders globally. One of the challenges of epilepsy is that folks experiencing the disorder can’t always get a precise diagnosis. On top of that, many people misunderstand epilepsy, leading to stigma and a lack of public awareness of how to help someone experiencing a seizure. That’s where organizations like the Epilepsy Foundation of Georgia come in.
The Epilepsy Foundation of Georgia serves over 110,000 residents facing epilepsy and seizure disorders, and Dr. Courtney Dean, the Director of Programming, is our guest for this episode. As a Certified Rehabilitation Counselor, Courtney utilizes her skills and training to oversee statewide programming and outreach initiatives, serving as a prime example of how CRCs can leverage their expertise in leadership positions to drive change for individuals with disabilities.
Helpful Links:
Epilepsy Foundation of Georgia Socials
Secure First Aid Training (Seizure First Aid) | Epilepsy Foundation
There are two ways to get certified in Seizure First Aid:
- On-demand, at your own pace
- Live, instructor-led, offered virtually or in person
Certification is available through the Epilepsy Foundation national website or by contacting your local Epilepsy Foundation affiliate.
Welcome back to Inside Rehabilitation Counseling. I'm CRCC Director of Communications and Marketing Taylor Bauer, and I'm excited to bring you another conversation exploring the art and science of rehabilitation counseling. According to the World Health Organization, around 50 million people worldwide have epilepsy, making it one of the most common neurological disorders globally. Yet, one of the challenges of epilepsy is that folks experiencing the disorder can't always get a precise diagnosis. On top of that, many people misunderstand epilepsy leading to stigma and a lack of public awareness of how to help someone experiencing a seizure. That's where organizations like the Epilepsy Foundation of Georgia come in. The Epilepsy Foundation of Georgia serves over 110,000 residents facing epilepsy and seizure disorders, and Dr. Courtney Dean, the director of programming, is our guest for this episode. As a certified rehabilitation counselor, Courtney utilizes her skills and training to oversee statewide programming and outreach initiatives and is a prime example of how CRCs can utilize their expertise in leadership positions to drive change for individuals with disabilities. Please enjoy this insightful conversation. Dr. Dean, thank you so much for joining us today on Inside Rehabilitation Counseling. I've really been looking forward to this discussion with you. And I kind of want to start at the beginning of your time as a certified rehabilitation counselor and even before then. Let's hear a little bit about your journey. And can you tell me about the first time you learned about the profession of rehabilitation counseling and what drew you to this work?
Courtney:Of course. Well, thanks for having me. You can just go ahead and call me Courtney. So, funny enough, I had never actually heard of rehabilitation counseling or the profession before I started looking at grad programs. Originally, I was aiming for a developmental psych degree. So I just wanted to go straight to the PhD track after taking a break from undergrad and, you know, shooting for the stars, trying to be an overachiever like usual. But then when I started looking at master's programs just as a backup plan, I saw clinical mental health counseling at Georgia State University. Everybody knows about clinical mental health. But then in the corner, they had a secondary program and it was the clinical rehab counseling program. And I've never heard of that before. So I was like, wait a minute, let me click on that, see what that's about, just out of pure um curiosity. And instantly I felt like I found something that just kind of clicked and it fit for me. So it kind of brought together the two things that I care a lot about, which is mental health, of course, and supporting people who live with chronic illnesses and disabilities. So I ended up applying about a week and a half before the deadline for the program, totally last minute. And somehow it turned out to be one of the best decisions I've ever made. So honestly, thinking back talking to you right now, um, the spark really came earlier in my work in nonprofit and my after school work and kind of just volunteering growing up and constantly seeing how systematic barriers just kind of outside of just medical needs shape people's opportunities. So becoming a CRC has given me the tools to walk alongside the clients that I work with on a daily basis and not even them, but sometimes their family, and just kind of see the person as a whole with goals and dreams and challenges. And so it was just a natural passion and extension of myself for a bridging equity and empowerment within the community.
Taylor:I love that. And I think it's so funny for a profession, so many people just kind of stumble across how quickly you'll hear people like yourself say, uh, this is such a natural fit. This is exactly what I need to be doing or what I want to be doing. And uh, I know we're certainly grateful that you uh that you found this profession and you're doing the great work you're doing. You currently serve as the director of programming for the Epilepsy Foundation of Georgia. Um, can you tell me a little bit about your time with the organization, your current role, and just some of the programs your organization offers that you work uh with closely?
Courtney:Coming into it initially, just like I hadn't heard about the CRC profession, I've never heard about the Epilepsy Progestion of Georgia. And I had been, I relocated to Georgia in 2015 and was working at Georgia Tech as a program coordinator at one of their um outreach programs. I was actually sitting in for the president of our RCA grad chapter in a board meeting, just to fill in I was the secretary. And I was already an internship at GVRA. And after presenting to that board meeting, being a stand-in, just a seat filler, the program coordinator for the EF Works program pulled me to the side and asked me whether I'd be interested in a secondary internship with the foundation. And so after speaking it over with our department head, they was like, if you can manage it, go ahead. So I ended up having two internships with GVRA and with the foundation, and I instantly fell in love. So I've been with the foundation. I started as an intern with one of my classmates. I pulled on with me from GVRA in 2018 in December, the week uh a week before my birthday. So December 7, 2018. And I went from an intern to the full-time employment specialist running job club, um, the support group that we kind of launched and different things like that helping on the foundation side. And then I worked my way up to the operations and outreach manager for the EF Works program. And then with its current transition with organization structure, now I am the director of programming and outreach for the entire foundation and still have my hand in the EF Works specialized vocational program. And so being a director of all programming now for the foundation, I oversee all of our statewide programs that support individuals and the families affected by epilepsy. Um, this includes initiatives, like I just spoke, our EFWork specialized vocational program that helps people with epilepsy and seizure disorders because everyone isn't officially diagnosed with epilepsy. Keep me for employment, find new employment. Um, people who are not sure if they want to go to the work field, we kind of talk about the college tracking, um, technical training and different apprenticeships and things of that nature and how that works. We have our medication assistance program. Um, so no one goes without medication. And sometimes recently we were able to actually provide uh a medical bed for a young man at CHOA. So that was really cool. That was something different. And then um we also provide free seizure first aid training across schools, workplaces, and community groups. So we're piling in a lot of new initiatives. Like recently, um, we're working on our lunch and learn series, which um I think is really cool. And it's so exciting to see programming grow because a lot of times organizations get stuck and we get complacent, and the community kind of there's a lag. And so keeping that connection and building something fresh and hearing the voices. And my goal essentially is to make sure our services are not only accessible, but are empowering and impactful. So being more intentional with programming. So helping people who live with epilepsy feel seen, supported, and equipped to thrive. It's incredibly rewarding work. And I'm proud to be a part of this organization that truly is changing lives all across Georgia because we service the entire state.
Taylor:Yeah, that that's fantastic and certainly something that folks all across the state need. Um, and it's great to see that you kind of started as an intern and been able to work your way up. And um I always find that to be a sign of both the organization being a fulfilling place for you to be working, and then also them identifying early on your potential and your training and skills and uh those mutually beneficial um uh processes of being like, I feel valued, there this organization's making me feel valued, and they know that I value them and doing my work here, that leads to great things. And it sounds like great things are happening there uh with you and your team. And we talked about like systemic barriers and things like that, and the challenges that can come with epilepsy or any sort of condition and having to navigate um medical and community resources and things, and uh, depending on when you've been diagnosed and things like that, or as you mentioned, haven't even formally been diagnosed, how are you gaining access to those things? And you know, on top of living with a disability or a condition, it's so challenging for a lot of people to navigate those barriers. And I find that to be something CRCs are especially equipped to do is help people navigate those barriers. And um, the way that we connected was I had you had put a really thoughtful comment on a LinkedIn post of ours, which I was very grateful, grateful for. And on your uh LinkedIn profile, you talked a little bit about those uh that concept of dismantling systemic barriers and particularly with those affecting marginalized communities. Um, and you know, we know that there are a number of different approaches to take with dismantling these barriers. And uh you listed on your LinkedIn that you like to do this through creative experimental methods and collaboration and really focusing on community-based strategies, which it sounds like is happening there at the Epilepsy Foundation of Georgia. What are a few strategies that you've found to be particularly successful in this area that you can share with others who might have a similar goal or calling to start dismantling some of those systems that make lives harder for uh marginalized communities that are already going through uh hard things just because of the way that the world is built?
Courtney:Yeah. Well, for me, first and foremost, um, dismantling starts with really listening to the people who are most impacted. Too often we have programs who mean well, but they are built for the, they're not necessarily built for the communities that they're servicing. And so that's where they fall short, unfortunately. So one of the most powerful strategies that I found is co-creation. So that's bringing people with the lived experience into the planning, into the decision-making and the evaluation process. That's the kind of collaboration where real change happens and it's long-lasting. Um, we've actually kind of seen this work with our recent partnerships with organizations like Florida Epilepsy Services and Angels of Epilepsy here in Georgia. So together we're able to meet people where they are, whether that's offering transportation to our local job club, whether that's um taking trainers into the schools or sharing resources that one organization may not offer, but the other one does. Um, it's a powerful reminder that we don't have to do everything alone, and our impact multiplies when we really work together. So I'm constantly piling the small ideas, taking creative risks, and learning in real time. And I always center lived experience as a tool for advocacy. And so dismantling barriers isn't one big act, it's a series of intentional community-driven steps. So, my advice start small, listen deeply, and build your community with the community, not just for them.
Taylor:Yeah, I love that. It's kind of like that, you know, speak with us, not for us mentality, you know. Um, and I think involving the people who you're seeking to impact the most from the get-go, you know, from hearing, not only guessing like what would be useful for them, but hearing from them what would be useful to you and what things, what what needs aren't being met, what needs maybe are being met, but going a little bit further or a little bit deeper could make a huge change in their lives. And then also just again, kind of that concept of affirming that you're here alongside them working toward the goals that are going to, you know, transform their lives. And I think collaboration is key. There's this concept of like thinking big to change these vast programs or systems that we we exist around. And it's it's not about solving every single problem on day one. It's like, where can we start and build some momentum, make those partnerships and connections that I think is a really powerful thing that you pointed out. Um, even just talking to people who are in similar organizations about the work they're doing and kind of bouncing ideas off of each other and then saying, like, I think it's worth taking this, like you said, creative risk to try something new or take a different approach, or at the very least, just listen to people about what are we not doing? Let's say things are going great, right? Uh, what are we still not doing that we could be doing better or more of? And I don't know, I think I think of it as a hunger. And I think CRCs are particularly um hungry professionals where like I never hear from folks, your peers, that uh you have a day where you go, okay, I've done it. I've helped all the people I wanted to help them. We're done. You know, it's this concept of like, what's next? What more can I be doing? And, you know, that can be very challenging sometimes to always be looking for that new way to impact. Um, but I think you've pointed out there's a really powerful strength and uh advocacy that comes with working alongside people who are passionate with you.
Courtney:To encourage new professionals or just people in the community in general, um, when you're reflecting on how to make a difference or how to make an impact or we're evaluating these programs or seeing what we can do, just to sit back and then ask yourself what do the people in front of me need today? How can I just remove at least one barrier? Because we can't solve them all. We can't take them all away.
Taylor:You know, CRCC as a certification body, we work very closely with CRCs across the country. And um, we know that there's no shortage of challenges facing the profession, uh, whether it's licensure parity across different states or um, even like you pointed out at the beginning, people not knowing about this field until they're searching through a course catalog or a, you know, a program catalog, and they go, rehab counseling, I don't know what that is, or you know, some some something sparks their interest. We know that there's no shortage of challenges that this profession's facing, along with any profession, right? But it really goes a long way to say, like, what's a what's a thing we can do here that could lead to another opportunity for us to continue to make progress and so on and so forth. And I think, yeah, just taking that approach of looking at things as a as a step-by-step rather than like a whole marathon can kind of help a lot. And you'd be surprised when like you're passionate about what you do and you're knowledgeable about what you do uh as you and other CRCs are, how quickly that progress is, you know, identifiable and something that you can really hold on to and say, like, we're we're doing something here that's making a difference. And um, that sounds like it's you know integral to the mindset of your organization and the work that you're doing, which is fantastic. One thing I was curious about when I was doing a little bit of research about your work and some of the stuff that you've shared is this concept of sudden unexpected death and epilepsy or SUDEP as an acronym and the importance of normalizing conversations around this. What can you tell me about SUDEP and why it's so important for us to talk about this concept?
Courtney:Absolutely. So, SUDEP is one of the most difficult and often unspoken aspects of living with epilepsy. Um, it essentially refers to a person with epilepsy who has passed away suddenly when there's no other um clear cause but epilepsy. And so while it's relatively rare, it's real. And for a lot of families and friends and individuals living with epilepsy, not talking about it does not make it any less frightening. So there's a disconnect between the healthcare professionals and the community and having that tough conversation. So it's it's unfortunately it's not normalized and it should be. So this is why it's so important to normalize having that conversation around Sudep. Talking openly about this topic will allow people to be more informed, um, make more informed decisions about their health and safety. So, like being medically compliant and you know, adherent to medications, of course, seizure tracking, having a journal, making sure timing it, and is it in the daytime, is it nighttime? Have there been changes? Um, and being mindful of lifestyle changes, all of that can reduce risk. And so it often gives space for grief, awareness, and advocacy when we have these tough conversations. Silence does not protect people. Um, misinformation does not protect people, not having conversations doesn't protect people. Information does. And so the more we talk about Suda, the more empowered the community becomes around it. And so going back to kind of what I say earlier with the lunch and learns, we're actually sponsoring a lunch and learn series. Um, and we're gonna start with the healthcare professionals in November for Epilepsy Awareness Month. And so one of our volunteers, Kai, and two of her classmates, their third years in the Doctor of Umsteopathic Medicine candidates at PCOM, Georgia. And so I'm really proud of them. And so the goal of this lunch and learn is to provide just a candid and compassionate space for conversation to be had on, you know, why and how healthcare professionals must lead these tough discussions with family patients and the broader community to help break that stigma around epilepsy related deaths in the form, but a sensitive way at the same time.
Taylor:Those that that lunch and learn format is so impactful, I think, because you can reach a lot of people and really have it uh have an exploration of a concept or an idea that might be a little bit new to some people, depending on what experience they've had with SUDEP, and just kind of have a conversation about it. And like you said, it might not be something that is quote unquote like common within the epilepsy community. But I do think that it's a very CRC approach to a rare condition or experience to say, well, we do know it affects some people. So let's find out how what this is, what this is like to go through to have this happen to someone in your family or a friend or something like that, and take what we do know, which might not be the full scope of everything that you'd want to know about this condition, but let's collect everything we have and talk about it and find out what ways we can start normalizing this conversation so that ideally maybe it inspires other people to look more into it and eventually get a broader and better understanding of maybe not even how this might occur, but what is the best way to process this condition and this experience and then what comes next, right? Uh no one should have to go through anything uh like a sudden unexpected death. But um, if it is happening, how can we be supporting those people experiencing that in the best way possible? And a lunch and learn is a perfect way to get as many people on board with that as possible. You mentioned that your organization, the Epilepsy Foundation of Georgia, isn't just regional, it's a statewide organization. And I'm curious, specifically to your knowledge and training as a certified rehabilitation counselor, how does your background as a CRC equip you to meet residents in Georgia where they are and help them navigate epilepsy in their search for employment, community, or just general understanding?
Courtney:So when I think about that, and with the CRC training, because it's so much, we get so much information, and it's just we want to give it all. And specifically with the population I work with in Georgia, they're not just their seizures, they're their employment goals, their mental health, their family, their familial supports, and the cultural context in which they live. Because Georgia, whether you're in a city, whether you're more in a rural area, maybe you're in a mixed area, the way you navigate that is different based on where you are. So as a CRC, my training is rooted in understanding the intersection of disability, mental health, and meaningful community participation. So, especially around um employment specifically, because like I said, I came through as an intern on the EF work side. So in Georgia, that means meeting people with epilepsy exactly where they are, whether it's locale or virtually, um, and discussing, you know, the barriers that they're facing and whether they're newly diagnosed or navigating job loss or facing just stigma in general. Um, I help them build confidence, explore accommodations reasonable to their geographic area, and connect them with employers and other resources that understand their unique challenges that they may be facing. Because, like we know, just like with treatment plans, nothing is one size fit all. So all resources won't fit for the same group of people and even some people within the same household. And so, just beyond employment, it's about helping them find belonging in their communities, in their identities, and in their futures. So, my role is essentially just to walk with them, break down the systemic barriers and the ones that I can at least, and then remind them that epilepsy and everything else that they're going through outside of that does not define their potential at all.
Taylor:I love that. Yeah, it's not a deficits-based approach, right? Or deducing someone to you are the epilepsy you experience, right? It's it's taking into consideration what what does that epilepsy impact? What do they want to do to navigate that that condition? And in what ways are they needing to make connections within their community to things that are going to help them get to where they want to be? And I think that knowledge and that skill set of being able to look at the vocational as well as the community-based approaches to providing services to someone is something in particular that seems to be a through line for CRCs. Because, as you said, you're looking at the person as a whole. And I think as a society, you know, we've had more conversations about mental health and disability, and seems like we're making a little bit of progress and not just looking at someone who has a disability and going, oh, you're disabled and that's it, you know? But there is obviously a ton of work that continues to be done to hopefully fight against more of that stigma. And I feel like CRCs are the ones to lead that charge because, like you said, you're not looking at someone for what they can't do, or you're not defining them by their functional limitations only. It's identifying those and saying, what other things do we need to take into consideration to get you into the life that you want to be living? And I think that that's just really powerful and uh inspiring to watch. And um, specifically you mentioned too, you know, something that might work for one person might not work for another, even in their own household. I think that's a really interesting concept. And um I know the brain injury CRCs who work closely with those uh clients have told me in the past, you know, if you meet one person with a brain injury, you've met one person with a brain injury. It's not going to be one size fits all. And that goes a long way, I would imagine. I I don't, I've never worked with clients in the work that I do, but I would imagine that goes a long way in them looking at you and seeing and seeing that like you care and that you're here to support them and help them by not trying to fit them into a box that's broader than their lived experience. One thing that we've learned over the last few months uh about this podcast is we have a lot of people who are in their graduate program who are listening and trying to gain as much insight into this field before they graduate, pass their CRC exam, and, you know, uh kind of get thrown into the deep end, if you will. Um, so I'm curious, you know, from your perspective, whether it's a new counselor who's getting started in the field or maybe just a member of the general public who's curious about learning more about epilepsy or this profession, um, what are a few key things that you'd want everyone to know about epilepsy if you had the chance to speak with them?
Courtney:Hmm. So one of the main things that you'll hear everyone say when you ask them that if they work um with someone who has epilepsy or seizure disorders is that it's more common than you realize. You always hear that one in 26 will develop it in their lifetime, right? So a couple things. Um, one of the most important things I want everyone to know is that it's not just about seizures. Epilepsy is a complex neurological condition that affects every person differently, like we've been saying. So people with epilepsy are just that people with hopes, with talents, with challenges like everybody else. So another key point is that the stigma and misconception still exist and they can be as disabling as the seizures that as the seizures themselves. So educating ourselves and the community and others about what epilepsy really is and what it really looks like and what it isn't helps break down those barriers. And then finally, epilepsy is manageable with the right support systems and resources and understanding, people with epilepsy can lead fulfilled rich lives. Whether you're a counselor, a friend, a community member, your awareness and empathy can make a huge difference. And also, just to throw that out there, learn seizure first aid. It's simple, it saves lives, it helps reduce fear, and it's free. You can do it in person, you'll they'll have people come out no matter where you are in all of the states, literally, or you can do it self-paced online and get a two-year certification.
Taylor:Wow, that's fantastic. Yeah, you mentioned earlier something about uh seizure first aid. And, you know, I remember in high school or when I've had jobs in the community where you have to take CPR training. I feel like seizure first aid training would be just as important, especially if you're uh not used to being around someone with epilepsy and you might not know what to do in that situation. That could go a long way to helping that person going through that, as well as, you know, in some moments of crisis, right? People kind of freeze up because they have no idea what to do. Yeah. Informing and educating yourself on the best practices for, you know, helping in that situation could really help people, you know, not be so scared if it were to happen, right? So um, yeah, that's I'm gonna have to look that up when we get off this call. Um that's a really great idea. Courtney, it's been really great to get to talk to you and I'm I'm grateful for your time today. Kind of want to close out today just with a broad question we love to ask everyone who comes on the podcast. Um, as a CRC, as a director, as someone who is clearly, you know, working and doing work that is so transformative. What brings you joy in the work that you do?
Courtney:What brings me joy in this work is seeing people reclaim their lives and their confidence, seeing transformation. When a parent breathes, easier because, like you just said, they know that their child's teacher knows he's the first aid, right? Or when someone lands a job that they thought they couldn't reach because they've had the receptive surgery. So their cognitive ability isn't what it used to be. That's everything. So my work is a calling because the joy that comes from seeing people feel less alone and more empowered. As a CRC, I get to walk alongside individuals during some of the toughest moments that they might have experienced and witnessed their resilience, growth, and their breakthroughs. So knowing that little old me played a part in helping, you know, someone realize their potential and live full of lives, that just makes the work more than a job. It's a cause.
Taylor:So thank you to Dr. Courtney Dean for an excellent conversation on this episode of Inside Rehabilitation Counseling. There are some really great links to the work the Epilepsy Foundation of Georgia is doing in the show notes, including a link to a free on-demand seizure first aid training that I will absolutely be doing after we wrap up this episode. If you have any comments or insights to share about today's topic, email us at contact us at crccertification.com. You can also find us on Facebook, Instagram, and LinkedIn by searching CRC Cert. Like, subscribe, and rate the show on your favorite podcast platform, including Spotify, Apple Podcasts, or wherever you're listening to us today. And hey, if you have an episode idea for a future show, let us know by emailing us and getting in touch. Thanks for listening to Inside Rehabilitation Counseling. I'm CRCC, Director of Communications and Marketing Taylor Bauer. Take care.