Reintegrating After Brain Injury

Mandy Collins, speech therapist and case manager, shares her unique challenges of working with brain injury survivors, the importance of community integration post-injury, and the role of home and community-based rehabilitation. She highlights the importance of patient self-advocacy, shared goal-setting, and resources, such as BIND, for ongoing support. Mandy emphasizes the ongoing nature of recovery and the broad scope of work for speech therapists within the neurorehabilitation field.

Transcript

Brittany: 0:07

Hi, I'm Brittany and a member of BIND and a TBI survivor.

Carrie: 0:12

And hi, I'm Carrie, a stroke survivor and a member of BIND as well. And today we're welcoming Mandy Collins with us. She works for Collage Home and Community Rehabilitation. She is a speech language pathologist and pathologist. It's ST. You know, that's, I can say that's all right. But yeah. And a case manager, um, she has worked in. This in the speech field for almost 15 years. She worked at a post-acute day neuro rehab for 10 years before transitioning into the human home and community three years ago. Um, her entire career has been helping those who sustained a brain injury and learning and advancing her knowledge on how best to help this population, which yay we love. Um, Mandy is also a certified brain injury specialist and holds many other certifications that are used to assist people in their recovery. I think I said she's also a case manager, so we're gonna learn more about Mandy and how she helps all of us brain injury survivors and just kind of get into it. So welcome Mandy.

Mandy: 1:11

Yeah, thank you so much for having me here today. I appreciate that.

Carrie: 1:15

Of course. We're excited to have you here.

Mandy: 1:16

Thank you.

Brian: 1:17

Welcome to Bind Waves, the official podcast of the Brain Injury Network of Dallas. I'm Brian White, BIND's executive director. On each episode, we'll be providing insight into the brain injury community. We'll be talking to members and professionals regarding their stories and the important role of Binds Clubhouse. We work as a team to inspire hope community and a sense of purpose to survivors, caregivers, and the public. Thank you for tuning into bindwaves let's get on with the show.

Carrie: 1:49

Um, so just to kinda get us started, what got you started with speech therapy and the brain injury community? I.

Mandy: 1:57

Yeah, great question. So I actually started off fun fact, uh, wanting to do physical therapy and after observing some wound care sessions, and I'm not a feet person and so I decided pretty quickly in college that probably that wasn't for me. Um, my mom, who's a pediatric nurse, she said, Hey, Mandy, you love to talk, you talk a lot. You might be a good speech pathologist. So it's really kind of what started that trajectory for me in college. Um. I thought because my mom's a pediatric nurse, that I would go the pediatric route and work with children. But once I got into grad school, I started doing rotations at places like Baylor Dallas and their day neuro program. The stroke center in Dallas, Pate Rehabilitation was another internship of mine, and that's where I truly just fell in love with working with adults, number one. Um, and, and just the, the brain injury world. And, and just the neuro world, the brain is just so fascinating to me because it's so different. Although the brain is the same for everybody, um, it's so different and we can present so differently, um, when something happens to it. And so for me it was just this almost puzzle of if somebody has an injury or if something has happened to someone. It's my job to put the pieces of the puzzle together to figure out how best to help this person. And so it's just a combination of always kind of keeping me on my toes versus helping somebody and, and trying to make a huge difference in their recovery and in their life. So that's kind of where I started with my love of, um, working with adults and going the neuro direction.

Carrie: 3:32

And I, my listeners probably get sick of me saying this'cause I say this, so many speech therapists start with children. Yes. And then they find the brain injury world and you either go, Nope, not for me, I'm staying with the kids. Or Yes, no, I love this. So we have to let you know. But basically when you meet the brain injured right after they've had a brain injury, we are children. We are just like children. We're learning, especially for speech we're, I didn't have the problem. Yay. Again, like I said, I'm a talker too, so, um, but you know, a lot of people after brain injury that's, they're having to relearn how to talk. So they are just like a kid relearning and are learning for the first time, how, what letters are, what, how to make the sounds, how to find the words, and all that crazy stuff. So we definitely do appreciate you deciding to stay with the adults.

Mandy: 4:20

Thank you. Yeah, and I think that brings up a good point, is. You're right. A lot of people do go the pediatric route, but I think the reason for that is. Our field is still very relatively unknown to the average person. Most people truly don't understand what I do. When I tell people in the community, I'm a speech pathologist or a speech therapist, they, their first thing is, oh, you work with children? Um, and I say, no, actually I don't. Because that's just the conception that most people have or the, the preconceived notion that people have about a speech therapist. And so I am excited to educate people, no, I work with adults and this is what my job looks like. Um, and so I think, you know, that's. That's one thing about the pediatric is I myself didn't realize what, what a speech therapist did with working with the adult population until I got into grad school and got to see that firsthand. So yeah, you definitely bring up a good point there.

Carrie: 5:11

Yeah. But that's, and then, so you kinda, you did speech therapy for a long time and then you moved into case management.

Mandy: 5:18

Yeah, so I had the opportunity a couple of years ago to move into case management. I do still. Have the luxury of getting to do both.'cause I can't just give up my passion and my love. Sure. But I get to take my knowledge and my experience and apply it in a different way as a case manager. And I have found that, um, to be very exciting and rewarding as well.

Brittany: 5:42

So being a case manager, how does that fit into the therapy daily schedule?

Mandy: 5:47

Yeah, absolutely. So I always kind of explain my job to people as being the center hub, right? You've got physicians, you have insurance, you have the patient and their family. You have, um, the therapy team. There's all these different elements of somebody's recovery. And so I like to think of a case manager as that center hub. It's the person that everybody can go to. The one center point where we can try to bridge the gap and bring everybody together to really make sure that the person is getting the, the program that they need that's for best for their recovery.

Carrie: 6:25

That makes sense. So kinda like that project manager. Yeah. In way. So now I'm curious too, so we've talked about. Speech therapy. We're not done talking about all these things, speech therapy and case management. But when I was doing your intro, this intrigued me what is a brain injury specialist, because I have not ever heard that term before.

Mandy: 6:46

Yeah, that's a great question. It is a certification that you can earn. Um, there's various stipulations to be able to, um, be able to test for it. So it is a certification that you test for, uh, it's, it's. In my opinion, pretty difficult. Uh, and so it helped that before I tested for it, I had worked in a post-acute rehab every single day with people who had sustained a brain injury. So I had the very, the clinical knowledge behind it to be able to go in and take this certification. And then there was a lot of studying as well. Um, and so, um, it is just an extra certification that I have, uh, after sitting down and taking a test and passing it, that just demonstrates, uh, an. An elevated knowledge in the field of brain injury.

Carrie: 7:34

Okay. So it just kind of goes hand in hand with speech therapy and case management. Sure. You don't do Sure. It's not requirement any extra or above. I mean, it, it just kind of gives you a leg up, but it's not a spec. I mean, you don't. You don't go, okay, today I am gonna put on my brain specialist hat and work specifically on this. It's kind of just an additional,

Mandy: 7:54

yeah, it, I think it's a way to also help the public, to help employers, to help just anybody when they look at somebody on paper to be able to say, okay, this person has a little bit more specialized knowledge and brain injury. Because again. As a speech pathologist, our field is so broad. Mm-hmm. I mean, you can, you can do dysphagia, you can do voice, you can do, um, you know, cognitive therapies, uh, your speech and language therapy. There's just so many areas that this just kind of helps people know. This speech therapist has a little bit more knowledge and brain injury, um, versus maybe somebody else who's. Working in a school with children and doing more of that language or articulation therapy or somebody who's working in a voice clinic but doesn't do so much of the neuro. Um, it's just a way to kind of help narrow down and identify those who have that more extensive knowledge. Okay. Maybe. Oh

Brittany: 8:45

yeah. And so with, um, post brain injury, you probably encourage people to go in community. So why is it being, being involved in the community so important?

Mandy: 8:56

Such a good question and it's, this is what I can probably talk about. Mm-hmm. And really talk y'alls ear off on. So one of the things that I've found, whether you're in a clinic or whether you're in the home and community environment like I am right now for, for my job, they're oftentimes. Can be a panic when it comes to discharge. What is next for me, especially for people who don't feel like their recovery is done, but they're discharging from therapy and it maybe, it's, maybe it's a, a funding reason that they're discharging insurance or whoever is saying, no, no more therapy. You've gotta go. Um, maybe it's just you've completed the program that you're in and it's, you're, you're ready for the next step. But there's just a level of, of. Sometimes panic, fear, anxiety of what's next for me. And I know with my knowledge that recovery doesn't stop. Uh, recovery continues to happen if you can put in the work. So I wanna make it my job and my mission to help people learn the tools that they need to recover after they've stopped therapy. Um, and so getting people into the community is really how you're gonna further your therapy. After brain injury. If you're sitting at home and you're not leaving the four walls of your house every day, um, you're probably not as likely to be able to make the gains and make the recovery as somebody who is just living their life and going out there and meeting new people and, and experiencing new things, um, it's just good for the mind, the body, the soul. All the things to get out there. And so that's where in home and community we really get to work with patients, getting them into the community and helping get them set up for what's next while we're working on their goals and while we're helping them recover, we're always planning and trying to help them figure out what's next for them after discharge.

Carrie: 10:47

Okay. So now I'm gonna back up just a little bit before I go to the next question. Um, so home and community health. Are y'all And I, I don't wanna say, I'm trying to figure out how I wanna say this. So like, we know Rehab Without Walls, are y'all similar to that? So you go into similar mm-hmm. So you go, this is like, it's, is it after day neuro or instead of day Neuro.

Mandy: 11:09

The cool thing about home and community is it can fall anywhere on the continuum. I think a misconception with home and community is that, that it comes at the end of your recovery. You, you're in acute care and then maybe you go to inpatient or outpatient rehab or a day neuro, and then very last you go to home and community, and then you're kind of done after that. And that might be true, that might be some people's. Trajectory of their recovery. Mm-hmm. And that could be very true for them. You know, we also have people though that aren't appropriate to go to a day neuro program. Maybe their level of alertness or their fatigue and their endurance, uh, prohibits them from participating in a day, neuro or an outpatient program. And so yes, that's where home and community, we would go into the patient's home with them and start working on the goals that they need to be able to get them to whatever their next step is and maybe their next step after us. Is going to a day neuro program, or maybe they discharge from us and they go to outpatient. And for some people, you're right, it's at the end of that kind of recovery continuum. And so we truly are trying to set them up for you, have completed your therapy, and let's figure out what's next for you.

Carrie: 12:16

Okay. So that's good because I know, I mean, you said it and we say it here. I mean, just because insurance stops paying for therapy, therapy doesn't end. Sure. As a survivor myself, I know therapy is gonna be going on for the rest of my life, which is why we have BIND is Sure. We call it therapy by doing. It's nontraditional therapy. But everything we do here, all these wonderful skills we learn here in the podcast is some sort of therapy. Whether it's, it's working our brain or cognitive, um. Our previous co-host, she had aphasia and you wouldn't even know it. Mm-hmm. When she was on here, being a co-host, you know, so everything we do here, people cleaning, mopping, they were doing that this morning, there's their PT. So we get a lot of all that done. So we definitely know about the therapy. Never ending, but Exactly. And we are big on community here as well. So you talked about the therapeutic benefits of community events post-injury, and I think you kinda hit on that, but I mean. Is it hard to get, like we find it hard sometimes. People, you know, we encourage people to come to BIND. Mm-hmm. Because we're, you know, maybe when you're done, you're discharged, you're like, I don't really know what I don't know what I don't know. Sure. First, so I don't know, am I able to go back to work or do I even wanna go back to work? I don't know what the next chapter, the next step looks like, do I wanna go to a BIND? Do I want home? And what you have, sorry. Yeah, yeah. I'm blanked on everything, but, um, so how do you encourage those people that are kinda in that, you know, well therapy is, they're telling me I'm gonna have to stop and they're telling me I had to go be in the community, but I'm scared. And I mean, how do you encourage and motivate and get them involved and back out in the community?

Mandy: 14:12

Yeah, so that's, that also is the other thing. I really love my job. Just in case y'all aren't gonna be able to tell by the end of this, I love my job so much. So with home and community. I'll back up and say, you know, I worked in a post-acute rehab for 10 years and I've worked in another setting before that. And I think there absolutely is a time and a place, and those settings do amazing, wonderful, great things for people. One of the disadvantages that I personally found working in, in, um. Like a a day neuro program is that while we are able to go out into the community, to some extent, a lot of the therapy is done in the clinic. The majority of the therapy is done in the clinic, and that goes for every discipline. And what I noticed is that there isn't always the carryover from the clinic to the home life. Pat patients would come in and they would do these beautiful things in the clinic and then they would go home and kind of fall apart. And there's many reasons, um, why that might happen. What I've found with home and community is that we are able to do these tasks real life in the moment in their environment, and so that is how we get them comfortable with what's next is we are already planning. What's next from the very beginning. And so as we're doing therapy with them and moving through their, their therapy course with them, we are doing the things with them that they will be doing after discharge, so that when they do discharge, they're already set up and comfortable. They know what's next for them because they've done it with a therapy team. Oftentimes we will find that if you ask somebody to do something and they've never done it before. There is an element of maybe fear, and so they don't want to try it because it's like, well, I haven't ever done that. I don't want to. I don't wanna try it. I'm scared to do that. So that's where the therapist says, I'm not scared. Let's do it together. They will go with the patient or the patient's families. They'll try whatever the task or the activity is, and help instill that level of comfort to the patient, and confidence to the patient and prove to them. I know you can do it now. I need you to know that you can do it and look, we're doing it together and, and help set this person up for when discharge does happen and the therapist is no longer there. I know you can keep doing this by yourself without me there.

Brittany: 16:30

Yeah. For patients. I know for my, a little bit, my story. Um, when I first had my brain injury, mine was neglected for seven months. So I think maybe having a caseworker would probably help, but even with the caseworker. So how do you, um, advocate for your patient?

Mandy: 16:46

I always say, my saying that I say to everybody is, if it's a problem for you, it's a problem for me. It is so often that I will assess a patient as as a speech therapist, but this kind of rolls into case management too. I will assess a patient, or the therapy team will assess a patient and. It doesn't, things don't really show up on testing. On paper, you look fine. You tested great, you fell within normal limits, and the patient says, no, but I'm still having problems. I can't work like I used to. I can't focus like I used to. I'm having problems with my memory like I used to. They'll point out these specific things and so I, I, that's my motto is if it's a problem for you, it's a problem with me. I don't care if it shows up on testing or not, because it's about how you're able to function, not how you're able to test. And so. Um, that's as a case manager also where I'm able to advocate and I think that's where my experience as a speech therapist comes in, is as a case manager. It's a lot of writing reports, sending information to physicians or to insurance to take what the patient and the therapy team are doing together to be able to justify and warrant the services that are needed. And so that's where I get to put my. Clinical experience and my case management experience together and say, listen, I know on paper it may not look like this is a problem, but let me explain to you all the reasons why this is a problem and how this is affecting this person and why we do need to keep working with this person to get them to their goals.

Brittany: 18:16

And then how do you help patients advocate for themselves? Because I know I had a hard time advocating for myself'cause I went to the same doctor he is like, go home, turn off the lights. So I was gonna school at the time to be a respiratory therapists in temple. So I went and drove back two hours and then the next month it declined. I didn't know what a cup was. I went back to that same person. Oh, you're fine. So I drove two hours right back to school. I. Declined and then I went, I didn't know my name the third time, and they're like, uhoh, you might have a brain bleed. Go to the ER that's attached to it. And then found out I had post-concussion at the time. But then they're like, okay, you're fine. Discharge went back to school and whew, like. So I was just sitting on a brain injury for seven months. I didn't know I had, I kind of knew I had,'cause I studied medicine, but it was so hard to advocate for myself to tell'em, there's something's wrong, there's something wrong with me. And no one like kind of listened to me until like, actually my primary care listened to me.'cause like your ankle's still swollen here. And then she's like, go to a orthopedic orthopedic's. Like that's foot drop or drop foot. And it's like, that's a brain injury problem. Goes to a brain injury specialist, and then that's when the ball got rolling, but seven months too late. So I wish I had like this ran or like. The knowledge to advocate for myself and or a case manager. So how do you actually help your patients advocate for themselves?

Mandy: 19:37

Yeah, I think that brings up a good point of so many people tell what Take what physicians tell us at face value. Well, my doctor said this, so that's the end of it. And I think there's starting to be this shift in society of people knowing that it's okay to question and it's okay to kind of. Really advocate for yourself and stand up for yourself when you know that there's a problem. And so in the home and community model, we are very, very lucky to have such large, amazing teams of, you know, PTO OT speech, but also we have phenomenal social workers, counselors. People who can help teach those skills of advocating for themselves because that doesn't come natural for some people. Some people don't wanna ruffle feathers. Mm-hmm. Don't want to, um, whatever the reason may be. And so that's,

Brittany: 20:27

or have aphasia too.'cause I actually had aphasia, which. It looks like I don't, but you know.

Mandy: 20:32

Sure. Yeah. And so that's, as a team, we would help support somebody in our program advocate for themselves and, and help, help teach them the tools and the things to say, and, and also we actually go with our patients. Uh, we have the luxury of showing up at doctor's appointments with our patients and saying, Hey, listen, this is what's going on. And, and helping the patient advocate for themselves. And so that's. Uh, that's one of the positives about our program, but not everybody's in our program. And so what I would say to people who are maybe just sitting at home or like you, you, you tried, but you were just kind of turned away. Yeah. Um, my advice to those people is once again, if you know it's a problem, it's a problem. I would seek out, um, people who really know the brain because. You know, doctors are pretty specialized, and just because you go to one neurologist doesn't mean that that neurologist really knows a ton about whatever your diagnosis is. Um, you know, may, you may have had a, a traumatic brain injury, but you might be seeing a neurologist that really deals more with migraines or whatever. So I tell people get, always get a second opinion. So number one, you'd wanna go to. A neurologist or somebody that deals with the brain. Um, there's also something out there called a physical medicine and rehab doctor that we, that typically are, they're very knowledgeable in any kind of brain dealings. Um, they're, they're great people to try to help advocate for you as well. Um, so that would be number, number one is going to a doctor that knows specifically about neuro. But if you go see a doctor and they're still telling you, you're fine, you're fine, you're fine. And you don't think that you are. I am such an advocate of second opinions. Go, go get a second opinion. But I know I would if, if something major were going on with me and I didn't like the first answer, I would at least go get a second opinion. And now if you're getting a second opinion and it's the same opinion, that becomes a little bit more of a battle. But then if you've got conflicting opinions, well now you know that you probably need to keep pursuing what's going on with you.

Carrie: 22:29

That makes sense. So on a kind of a different note, but, um, and I mean kinda same with kinda, but, so this is a question we like to ask, um, that's kind of a little bit awkward, but for as this works for both as a speech manager, a speech manager, as a speech therapist, as a case manager, even just as an advocate in what you do in your environment. So how do you handle survivors? Um. I don't like saying patients survivors, um, when they start getting those feelings of anger or depression, when they've gone a little bit out, that they just feel like they're not progressing to where they should or they don't, they're getting that, like the community is still too scary and they, they. Don't know how they're gonna fit in anymore. I mean, how do you kinda, because I mean that, you know, a lot of people, I did dealt with all that on my own, but not everybody can. And so how do you help those people that, does that make sense? What I'm trying to ask?

Mandy: 23:27

Yeah, absolutely. Again, we have amazing counseling support with us and, and within our home and community model, we have the, um, counseling and the, and the social work support and the, you know, we have neuropsych support and all the, all the support that as a therapist we might need to, to help the patient. I think, you know, those feelings are so valid of the, the anger or the aggression or whatever, um, getting back into the community when somebody's feeling that way. It's about baby steps and it's about their comfort level. I'm not gonna push you and ask you to do something if I really don't think that you can do it. And so I think there's a level of trust when you work with your therapy team. That tends to, I think, help. Um, you know, oftentimes when people trust us, they tend, they tend to be willing to push theirselves a little bit more out of their comfort zone. So that's helpful to be able to get in there and really build that rapport and trust with someone. But like I said, just. As a therapist, understanding and knowing I am not in your shoes, and so I'm gonna work at your pace. I know what I think you can do, and I know what I think you need to do, but ultimately it's up to you and it's gotta be at your pace and on your time, and we're gonna work through that together. And if we can build these little steps at a time, then over time we've taken these big steps to get to that goal. And I think letting. Our survivors and our patients have a say in their goals.

Carrie: 24:53

Mm-hmm.

Mandy: 24:54

I don't set goals for my patients. My patients set their goals. Sure. And so asking the patient, what, what do you think is doable for you? And let's work towards that. Um, and then that often times will help because it's the goal that they've set for themselves, knowing what they think they can accomplish. And it too.

Carrie: 25:10

Right. And then it's not so unrealistic.

Mandy: 25:12

Correct. Yeah.

Brittany: 25:15

All right. So how'd you find about find out about us? BIND.

Mandy: 25:19

You know what I, I actually don't know because I've known about y'all for so long. Oh gosh. So back when I was working in our post-acute program, we started bringing patients. Here to this location because this was the only location at the time. And so, um, we would bring, uh, patients here and try to get patients involved after, uh, discharge. And then now with our home and community model that I'm in, we use y'all as a resource while our patients are in therapy. So our patients may see us and also come to BIND. Um, and then again, like you said, it's such a great resource after discharge that, you know, our goal is to hopefully help work with people again, find those resources in the community, find the places that they can be a part of once they discharge, that's really gonna hold meaning and value in their lives. And find is just the most perfect place for that.

Carrie: 26:14

Oh, we'd love to hear you say that because that's like, you know, community's in our tagline. So we are very big on community. And Mandy, it was so good to have you here today. Thank you so much. And get to know you and get to know about your, yeah. Resource that you have and we'll make sure we get that all in there.'cause I'm excited. I didn't know there was more of y'all out there other than Rehab Without Walls. Yeah. Options are great. So thank you again for joining us.

Mandy: 26:35

Thank, thank you. Thank you so much for having me. It, it was such a pleasure. Okay.

Brittany: 26:39

Yeah. And to all our listeners, if you would like to contact us by email, um, you can email us at bindwaves@thebind.org. And then follow us on Instagram at bindwaves and visit our website, thebind.org/bindwaves

Carrie: 26:54

and again, don't forget to click that like button, that subscribe button, that share button. And if you're on YouTube, that Notify button, like I always say, just click all the good buttons. If it's got a thumbs up, go ahead and click it. You won't be sad. And just continue. If you wanna watch our pretty faces, we're on YouTube, so just continue to listen to bindwaves.

Brittany: 27:13

Yep, you can find us on all your favorite listening platforms too.

Carrie: 27:17

So until next time.

Brittany: 27:19

Until next time.

27:20

We hope you've enjoyed listening to bindwaves and continue to support Bind in our nonprofit mission. We support brain injury survivors as they reconnect into the life, the community, and their workplace, and we couldn't do that without great listeners like you. We appreciate each and every one of you. Continue watching. Until next time. Until next time.