When Brain Injury Changes Who You Are: Grief, Identity & Finding Purpose Again | E75

Jamie Arber: 00:00 Listening to the family members, getting a feel for the family members in this field is super important because a lot of the times they're carrying guilt for not looking, you know, not being in a position to be able to care for their loved one. Dr. Ayla Wolf DAOM: 00:15 Welcome to Dr. Ayla Wolf DAOM: 00:15 Life After Impact, the Concussion Recovery Podcast. I'm Dr. Ayla Wolfe, and I will be hosting today's episode where we help you navigate the often confusing, frustrating, and overwhelming journey of concussion and brain injury recovery. This podcast is your go-to resource for actionable information. Whether you're dealing with a recent concussion, struggling with post-concussion syndrome, or just feeling stuck in your healing process, know that you are not alone. This podcast can be your guide and partner in recovery, helping you build a better life after impact. Today I'm joined by Jamie Arbor, a licensed professional counselor, certified brain injury specialist, and executive director of the Supported Living Group in Connecticut. For more than a decade, Jamie has worked with people living with acquired and traumatic brain injuries, helping them move beyond clinical rehabilitation towards greater independence, purpose, and quality of life. But Jamie also brings another perspective to this conversation. He is a brain injury survivor himself. Jamie, welcome to Life After Impact. Jamie Arber: 01:22 Thank you. Pleasure to be here. Dr. Ayla Wolf DAOM: 01:24 Yeah. Dr. Ayla Wolf DAOM: 01:25 One of the things that struck me immediately when I was reading the About Jamie page on the Supported Living Group website was that it seems like from the moment you took that position as executive director, you immediately got to work building and creating and expanding the organization in a really highly meaningful way. When you look back, what does that feel like? Jamie Arber: 01:51 It's a great achievement for the individuals that we're serving and seeing the progress that individuals have made. That's not all on me. So we've got an amazing team here that has grown with the agency. We've been very, very fortunate to be able to grow and bring in talent. So now we have a clinical department with a neuropsychologist on staff, occupational therapists, board-certified behavioral analysts. And that added an element that was missing within community-based care, especially in Connecticut, in that a lot of individuals that are on the Medicaid waiver program have to wait to see their clinicians. And they might have a small service plan where they get to see that individual one time a month. And if there are behavioral problems going on, something of that nature, we can send an email, but we may not get a response back. So having clinicians in-house has benefited us hugely. And they're not ivory tower clinicians. They're walking through the programs, they know their individuals, and they take part in our manager meetings day to day. So they're able to interact with those with our managers and kind of address concerns. So that's that's been a big piece of pride for us as an agency and also the growth of our Inspire Arts program. Um we have a creative arts program internal to the agency where individual brain injury survivors are some of them are paid competitively to create artwork and seeing that program take off and individuals purchasing artwork and those that those individuals getting the recognition that they deserve is also something that's that I'm proud of. Dr. Ayla Wolf DAOM: 03:33 Yeah, Dr. Ayla Wolf DAOM: 03:33 that's amazing. Did you create an art studio where people can go and use that space? Jamie Arber: 03:39 So when I when I came on board with the Supported Living Group, it was 2017, and it was predominantly an agency that was based in eastern Connecticut. So the owner of the company, Christopher Brisson, who founded the agency in 2006, so it's our 20th year of service, said to me, What do you need? I need a building. Give me a building and I can build a program from there. Um and we outgrew that first space within a year. And then we spent a year trying to find another space, and then we found this a gorgeous location in Avon, Connecticut. It's around about it's over 20,000 square feet and sits on 6.3 acres of land, which sounds amazing, but then COVID hit. So we had this huge building. But the beautiful thing about the building was it used to be a marketing company. So we had studio space downstairs, creative areas that we were able to allow individuals to come into, and it was separated out as well, individualized cubicles for the designers. So during that COVID period, we were one of the only agencies to continue our growth because we were able to separate individuals in terms of social distancing. Um, and yeah, the the space has been wonderful. We've also been lucky to find an amazing art program supervisor, Rebecca Maloney. And that's been some of our success as well, hiring from outside of the disability services industry, bringing in new ideas and new ways of working with individuals. So Rebecca's one of those one of those talents that we're able to get a hand. She's amazingly kind and warm-hearted, but super creative and helps to push some bad brain injury survivors forward in terms of getting their lives back on track and finding purpose again through the medium of art. unknown: 05:32 Yeah. Dr. Ayla Wolf DAOM: 05:33 What are all the different mediums that you have in that studio that people are using? Jamie Arber: 05:38 So a lot of the time it's it's more traditional art-based, you know, pen, paper, um, oil paints. We have some individuals that have suffered strokes that have hemiparalysis and expressive aphasia. Um, with one of our artists, Larae Pablo, she does amazing pieces of artwork where she has hemiparalysis, but she'll tear individual pieces of paper off to make these amazing creations. Um, and they're some of them are huge. When I first met Larae, it was my first job in the field, it was 2010. And I always say she was like Adrian out of Rocky One. She had the glasses, the hat, and she would only work in little A4 pieces of paper. Moving forwards, she's now working on like six foot by eight-foot pieces, all individual elements. We have a wood shop here, so we have woodworking and more hands-on technical pieces. And then we also linked with Healing by Growing Farms, which is an amazing organization, actually run by brain injury survivor, Dr. Arette Ruez. Um, and she's developed a farming and sustainability program for brain injury survivors in Connecticut. So we have healing gardens at our Avon location and Bethany location that she helped to design and work with our individuals to create and tend to and develop. So we have that as well. And then we have the community-based stuff. We will go out to musicals, you know, social entertainment, those types of things, building that sense of community. Dr. Ayla Wolf DAOM: 07:14 That's Dr. Ayla Wolf DAOM: 07:14 incredible. And can you speak to what you see as some of the biggest challenges? Because I know you also lead support groups and you you also work really closely with these people that are part of this program. What are these biggest challenges that people face? Is it feeling disconnected from their family if they're now living in this um particular, which I've seen the pictures of these homes and they're beautiful. Um, you've picked some really gorgeous locations to be able to give people a really relaxing place to live. Jamie Arber: 07:46 I think disconnection is a big piece. The majority of individuals that we provide service to actually receive services on a 24-hour basis. So their injuries, most of them are significant. Um, and unfortunately, what you see a lot with individuals that have significant traumatic brain injuries is the person that they were before. The injury is different to the person they are immediately after, and then they're after the injury. So a lot of the times they lose everything or they lose the role that they had previously. So having the program space really working to develop that sense of community has been really important for us because you know our participants kind of get together, they've known each other a long time, they they're able to socialize together. I've had individuals that have got engaged and lived together in the program space with supports. Um, dating's an important thing. Another element is not to infantilize, which goes on a lot with individuals that have more severe trauma trauma in regards to brain injury, where everybody's trying to protect everybody. I think it's important to remember these were these individuals were fully functional adults before their injury. And after their injury, they had the same needs and desires as anybody else. Dr. Ayla Wolf DAOM: 09:00 Yeah, that's incredible that um you're being able to give people not only a space to live and receive medical care, but also almost create a family of its own with people that can, you know, support others because they're going through it all together. Jamie Arber: 09:15 That's a big, that's a big piece. It's always nice to hear when our individuals talk about family. They, you know, they they rely on each other. We have our celebrations, you know, our Christmas parties, and things like that. We've just had a big 20-year celebration, as I said, where everybody was invited. And ultimately, everyone within the agency, from the owner right the way down to our direct support staff, are there to support the individuals to be successful. And I think there's lots of different departments, but we've all got that identical goal, which is to help that individual be as successful as possible. Dr. Ayla Wolf DAOM: 09:51 How many people are in your program? And do you have a long waiting list? Jamie Arber: 09:55 So we have over a hundred individuals that are part of the acquired brain injury waiver program or with us through private pay models of care. In Connecticut, unfortunately, there is currently an eight-year wait list to get onto the acquired brain injury waiver program. And there's only around about 700 slots. So we we do get a lot of calls from family members, you know, wives, husbands whose partner have had have had a stroke or a car accident, and the hospital's trying to push them back home. And they're they're panicked. And it's very difficult to have to explain to them, even if you apply today for this Medicaid program that's associated with the state, it could take years and years. A lot of the time, one of the first questions I have to ask is did the did the injury happen at work? Did it not? Because then it's a different, it's a different conversation. But even with workers comp, that's not an easy pathway to take either. unknown: 10:56 Mm-hmm. Dr. Ayla Wolf DAOM: 10:56 Yeah. Wow. So you've got a lot of people that are on an eight-year waiting list just hoping for a space to open up. Jamie Arber: 11:04 Yeah. And what we're also seeing is in order to keep that waiting list just to eight years, you know, the Department of Social Services potentially using other waivers that are not appropriate or not really made specifically for brain injury to transition certain individuals that have had brain injuries onto mental health waiver, PCA waiver, so with lower levels of care. And typically that ends up with individuals failing, unfortunately, then going back into the medical system. Dr. Ayla Wolf DAOM: 11:37 And can you talk a little bit about what your role is outside of being the executive director and leading some of these small groups as a counselor? Jamie Arber: 11:49 As a counselor, I have my own um business specific to brain injury care. Um it's Neurospark Counseling, launched it this year just because of the need. I again, on the Acquire Brain Injury Waiver program, therapists, in terms of LPCs, are not permitted to provide services. Um in Connecticut, a lot of the services for brain injury survivors who are on waiver programs go through the Department of Mental Health and Addiction Services who do a wonderful job, but most of the time it's group-based services. And for brain injury, groups don't always work. Um, you know, we there's a wide array of difference within the brain injury community, and you could be discussing something very poignant to one person, another individual who has impulse control issues, might, you know, maybe talking about something completely different or interrupt. So I I launched Neurospark to try and fill that gap. And it wasn't just for the survivors, it was also for the family members, because I hear a lot, you know, from wives and husbands and even children, you know, struggling to come to terms with the changes that have happened and the the individual that they've lost. Um, and traditional therapies and counseling, there really isn't anything specific in education that that touches upon brain injury. So having an opportunity to support that group, I think, was really important. And then also the caregivers, the professional caregivers, um, at agency-based level, such as the supported living group, but also in terms of the medical community. You know, brain injury supporting individuals with traumatic brain injuries can be can be very exhausting. Um, it can lead to burnout because if you're dealing with somebody with, let's say, short-term memory issues, you're trying to reteach or come back into that individual's life anew every day. And all your efforts that you're trying to do sometimes feels that you're not getting anywhere. And that can lead to burnout. So I specialize in trauma. Um, I'm I'm certified in EMDR, eye movement desensitization and reprocessing, which I find incredibly helpful. And within that modality, individuals with mild TBI can definitely be supported. Um, and individuals that have sustained TBIs, dependent upon their level of functioning in terms of short-term, long-term memory and processing, can also be supported. I'm I'm working with somebody now that was, you know, very high up in the banking industry, but suffered from narcolepsy and was on the top of a ski slope getting ready to to ski jump and had a narcolepsy attack as she was going down, hit the ski jump, came off, and sustained a traumatic brain injury. Working with her now, EMDR is working out just fine with her, and she's she's working through some of the memories that are associated with that injury. Um, and then family members, as I said, the the EMDR piece allows allows you to go back into those moments of memory and process through them in a very, very different way to talk-based therapy. Um, hypnosis as well can be very beneficial in terms of just finding calming points and simple anchors to assist individuals if they're feeling overwhelmed in the moment. I can work with it, work with them to develop specific strategies to take them back to a space of calmness and relaxation, which has also been something very, very beneficial. Dr. Ayla Wolf DAOM: 15:27 Yeah. And with your EMDR, are you using buzzers in the hands or how are you adapting it for people that have brain injury? Jamie Arber: 15:35 So we have the normal light bar that can be utilized. You have the ferret tappers, the buzzers in the hand. I personally also like the uh the butterfly pug, especially when working with um female clients. And virtually, it can be beneficial as well. And you know, for trauma, sitting there with a male clinician and you're a female client that's that's suffered trauma, I think sometimes it's safer to do to do the virtual method because the individual feels so much safer. Um, so we're able to do that. And there are there are multiple adaptations, but those three are typically the ones that I utilize. But even for individuals that may have hemiparalysis, for example, you can do tapping of the feet in terms of a bilateral methodology. Um, so with you know, it it's it's adjusting to each individual that comes through the door. And, you know, with brain injury, every brain injury is like a fingerprint. It's very individualized to the person. Dr. Ayla Wolf DAOM: 16:35 Yeah. Have there been any surprises in doing EMDR where say somebody had a symptom that kind of unexpectedly got better that you weren't even necessarily addressing directly? Jamie Arber: 16:46 It's always it's always interesting because what what I find a lot is when when people come to me for EMDR, even if they've done a little bit of research around it, they're still nervous. So it's like that first when you're working with the individual to come up with, okay, what's the target memory you want to work on? A lot of the time, I I kind of identify it as dipping their toe in the water. They pick something easy. And as you're starting to work through that target memory, and you've done, you know, you've done all your history taking, you've done the resourcing, and then you start working on the memory, themes start coming up which suggest there's something else going on. And as you work through that and you reduce down the subjects of units of disturbance and increase the validity of cognition, normally I help the individual to clear that traumatic event, and then they want to get to the serious stuff. Or as you're doing it, the serious stuff pops in, and you're able to have a conversation around that and guide, you know, the next bout of processing towards that memory. Um, and I've seen one of my first clients that I ever worked with with EMDR. Um, she unfortunately had been a victim of a sexual assault as a teenager. And, you know, I'd gone through the training, I'd listened to the experts, but you're kind of still wondering, is this really going to work? And as we were, as we were going through the EMDR process, she was remembering being grabbed by the throat. And as I'm watching it, the hand mark, the redness was coming out on the throat. You could see the thing. And you know, The Body Keeps the Score is an amazing book. Um, I recommend if you get it maybe better to do the audio book because it's it's pretty dense. It's it's it's a it's a hard read. Um, but when you've read that book and then you see that happen, it truly, truly resonates that trauma isn't always within our awareness and isn't always trapped within, you know, we limbic system. No, it can be trapped physically within us. And when you do a lot of work in in terms of what's in that, the physical element, and that's part of EMDR. Even when you've worked with somebody to get their subjective units of disturbance down to zero, you're doing a body scan. Are there any sensations anywhere in your body? Um, and trying to work with the individual to identify because that can hold something from a pr from a past, you know, from their childhood or even something that's more recent, and you work through that piece. unknown: 19:21 Mm-hmm. Dr. Ayla Wolf DAOM: 19:22 Yeah. I've heard other people talk about the little T traumas and the big T traumas. And it sounds like a lot of people are, like you said, when they dip their toe in the water, they're like, let's talk about the little T trauma first and see how this goes before I start just going right for the big stuff. Jamie Arber: 19:40 And a lot of people, you know, the brain inherently tries to protect, protect us. And we everybody feels they do a great job in terms of compartmentalizing. There's only so much you can compartmentalize. And over a period of time, whatever you've stuck in that warehouse starts to seep out and into other areas. I was working with somebody the other the other day whose brother had a traumatic brain injury who was and he was sub subsequently and tragically murdered. And the the individual I'm working with had gone to the house where the murder had happened, and his memory, you know, we were just starting to process through. Um, or a factually, what he could remember smelling was coming up. And you know, it broke a full-grown man into tears because this is stuff that he hasn't worked through, and the bubble comes up and you're assisting the individual to move forward. I do, I find that what would take me years potentially to get to in standardized talk therapy happens very quickly within the EMDR, but that's also based on the relationship that you build with the individual because there's got to be that therapeutic relationship and trust. That's why I think dipping the toe in works well. And I don't push because that's the first element of trust. And then you and then you build from there. And that's not too different to what we do in terms of our our brain injury clients. Um, you know, you build a great relationship with the individual, and then if they if there's problematic behavior or something like that, you can be honest with them because they trust your opinion. Dr. Ayla Wolf DAOM: 21:20 Yeah, Dr. Ayla Wolf DAOM: 21:20 absolutely. And how do you walk that line between and I know again, every single brain injury is completely different, and in some cases, there is a lot of permanent damage and there's a certain plateau that people will reach, but at the same time, the brain is so neuroplastic that it's probably you probably see these amazing instances of people still, after many years, being able to learn new things or develop new skills. How do you work with people in terms of kind of working on the acceptance piece, but also not taking away hope that there's still room for growth and change and and new things to develop down the road? Jamie Arber: 22:00 I think that ties into, you know, that five stages of grief model that we briefly discussed before going on air. I I kind of use that model a lot within the brain injury community. Acceptance is kind of the highest goal that you can get to within that model. And acceptance can change on a day-to-day basis. Um, you know, individuals move within the five stages of grief alongside their families after brain injuries. Um I find the individuals that that we work with that had the most success have found a form of acceptance in terms of this is my injury, this is how my life is going to be now in terms of the injury, but this is how I'm going to make the best of it. And that can take some time. That that can definitely take some time to get to. Typically, that's individuals that have been in the brain injury community for more five or five or six years or longer, I typically find. Because the changes are so stark. I mean, you work, identity is such an important part of us as humans. You know, genetically, we're predisposed to a hierarchical system. And from the time we're we're knee-high to a grasshopper, we're involved in it as mum and dad. Okay, they're they're higher up on the higher. Then you go to school, then you go to work, and you you kind of find your place within the system, you develop an identity, you deve, you develop a sense of purpose around that identity. And then that potentially gets taken away, or you can't go back to that. So a lot of the time, you know, when the injuries first happen, you get that denial. I I I'm fine, I I I'm good, I I can go back to doing what I need to do. Then individuals potentially go back to into the family home or go back to the workplace, and this is even within concussion. This can occur. And they can't do what they used to do, or they're not the same person in terms of responding to stresses. You know, I've got a blended family, so there's five kids. When all the five kids are there, that's overwhelming for me, or my like as a standard guy. Um I could only imagine what it would be like if I'd just sustained a significant concussion and then going back into the house and you know, the the yelling and the screaming and the movement, it could be completely overwhelming. Um, and then what happens a lot of the time after denial is anger. It's the anger that I can no longer do what I want to do. It's the depression that kicks in, and then it's the projection out. Because most people don't, you know, most people don't want to sit there with the realization that I can't do this. It's a huge ego, it's a huge ding to the ego. Um, and then you've got the bargaining. Well, you know, if I do this, I'm gonna get better. A lot of the time people are scrambling around to find the miracle cure. They're taking, you know, they're they're they're online at two o'clock in the morning looking at the ads you see come up on YouTube or Instagram, and they're buying the, you know, the the Dragon Oil tablets or something of that nature. Dr. Ayla Wolf DAOM: 25:07 Or I'm gonna red light hat from the airplane magazine. Jamie Arber: 25:10 Yeah, yeah. They're they're doing the these pieces because they're scrambling around. You know, they're they're trying to find if I do this, I'm gonna get better. If you stay, I'm gonna get better. If you allow me to stay in this employment role, I I I can figure it out. And that, again, overwhelming anger, frustration, denial. The next stage is depression, and that often kicks in when the bargaining doesn't work. And then the individual withdraws socially, emotionally. We see that a lot. Um, and as I said, through this whole process, these stages, an individual with a brain injury, an individual concussion can move through these multiple times, forwards and backwards. I think it's trying to work with the individual to identify where they are on any given day is is important and keeping the stages as a guide. Because a lot of the times with behavior, it's it it's any behavior showing something going on internally. And I think work just asking questions and listening and and taking on board what's happening will help you identify, okay, we're in a stage of you know, depression today. All right, what are we gonna do to help this individual feel a little bit better? Is it something as simple as let's go outside for a while? Like for the program space, do you want to go into a garden? Do you want to sit down and have a conversation? Um for anger, okay, don't match anger with anger. There's there's really no point in doing that. Um, and you know, that's just standard stuff. If your kids are angry, you're not going to match them with the same level of anger. You're gonna you typically you will detach, um, display, you know, appropriate behavior and hope they come back and and and relax back down. Um so we, yeah, there's a lot of that that goes on. Acceptance, though, is the I would say is the highest level. And that can take a long time. And for some people, unfortunately never accept what's going on because they, with our traumatic brain injury population, individuals often get stuck longing for the person they were before the injury. We see that. Um, you know, everyone can long for moments in time, but they're moments in time, they're no longer there. But that's where the individual feels safe and they feel that moment was stolen from them. Dr. Ayla Wolf DAOM: 27:34 Mm-hmm. Yeah. I mean, brain injuries are so different from other types of medical conditions that maybe come on gradually. They happen suddenly, they catch people completely unaware, and that can be really the catalyst for just an increased difficulty in accepting this is this just happened to me and and now my life has changed in a way I never thought it would. I think one of the things that I've noticed that I I don't think I ever labeled it as bargaining, but maybe it is. Maybe you can clarify. Sometimes I'll be working with somebody and they'll ask me a question and I'll answer it as honestly as I can. And I think when they don't like my answer, they ask the question in a different way and then a different way in a different way. And so I'm finding like, and so for me, it took me a while to be like, why do they keep asking me the same question? Is it because they don't remember that we already talked about this? And then I go, no, it's not. It's because they just don't, they don't like my answer. unknown: 28:32 Yeah. Jamie Arber: 28:33 And your answer, you know, it's the final sometimes it's the finality of the situation. This, these are the changes that have occurred. And if you're doing testing, these are the results. These results indicate this. Um, that's hard for a lot of individuals to take up to to accept. As I said, you've you've worked so long and so hard to, you know, develop your position within a career. Or, you know, even in terms of your status at home, um, you know, covering them all. We've got them all, we've got the house that we always wanted. We're going on the vacations, we I've got the car that I've and all of a sudden that all changes, that gets taken away. You can't go back to work, so the house is in jeopardy. Everything and you're giving them that news, and they're hoping to go go to you and to be told everything's going to be better in a few weeks. And unfortunately, that's not always the case. And I think that's the toughest thing for people to again, acceptance. Because how do you accept that? Especially if it's, you know, if it's an injury that happens, a concussion that happens, a traumatic brain injury that happens that wasn't your fault, that was a car accident, or you were a victim of an assault, or even playing sports, and all of a sudden it's a clash of heads, and you're not the same person, and you can't go back to work. You know, you're you're going towards that bargaining in order to get better. What do I need to do to get better, to get back to who I was before? Because who's, you know, this is not discussed in any in any classes growing up. You didn't take psych 101 and their, you know, changing of personality and changing of identity. It's not really discussed. Dr. Ayla Wolf DAOM: 30:15 Right. And I know you've been on Mandy Swanson's show, and Mandy was recently just on mine, and we had a conversation around the fact that she feels like after her injury, she's much more direct in her communication. And yet one of the things that she's learned to say is when she's giving somebody news or advice or information, she can see in their face. You know, sometimes people are like, okay, I don't like what she just said, right? And you can see that. And so she'll say, How did that land? And what a beautiful opening to just say, I know I just said something you probably didn't want to hear. Let's talk about how that landed, what is happening internally, rather than you just nodding and being upset on the inside and not speaking to that. Jamie Arber: 31:05 I think that's important. I think that's important to get feedback from the individual. Um, I know that, I know that feeling um when you're you're talking with a family or you're talking with a survivor. And, you know, I I kind of say this to everyone there are going to be days that you're gonna love me, there are gonna be days that you're gonna hate me, but I'm always gonna be honest with you. And there are some days where you're giving honest feedback, and you know, excuse my French, but it's like I'm pissing in somebody's cornflakes. And I kind of use a little bit of humor in in the discussions, which which worked well, I find for myself. But yeah, I think it's always important to be honest. And, you know, you clinically I've been trained to look for those signs, though that discomfort, um, because most people will show it. Even for individuals that have TBIs, you're having a conversation with them, they're processing in the moment what's being said. And even if they have short-term memory deficits, in some capacity, that's going in. That's going in somewhere, that's being stored, that's being retained on some level. Um, and that can cause distress. Um, it can call it can cause then subsequently the distress stays in terms of the physical symptoms of distress, and then you've got behaviors for the rest of the day because the individual knows they're distressed, but but don't know, but doesn't know why. And then you're helping the individual to get through that. Dr. Ayla Wolf DAOM: 32:34 Yeah. Dr. Ayla Wolf DAOM: 32:34 And so many healthcare providers don't have a background in psychology or in counseling. They're not trained to do that. And then understanding what's happening psychologically behind the person that's smiling and nodding, or, you know, there's just so much nonverbal communication happening. And when you aren't trained to address that, sometimes it feels like there's the elephant in the room and you don't know how to address the elephant in the room. Jamie Arber: 33:04 And even though I'm trained, there are moments of discomfort. I I try to learn from every every situation because everybody is different. Um, and there's there's been mistakes. You're trying to, you know, you're trying to relay information and it, you know, it just isn't, it doesn't occur as it should have done, or the individual, as you said, is smiling, just like, okay, you know. And then 20 minutes later, there, you know, it hits them and the emotions are there. And I think that's another thing that that I've kind of adapted, especially working with the brain injury population, is that follow-up, is that touch back in? Because it can take time to process what's, you know, the information that's being laid out. Also adjusting the communication style, making it more simplistic. Because, you know, if I'm working with an individual that's sustained a brain injury, or I'm working with their family members, how many people are experts in brain injury? So taking out the medical jargons and just laying it out in a very simplistic way, say this is what's going to go on, or this is what's happening. Um, and we we see that. I mean, listening to the family members, getting a feel for the family members in this field is super important because a lot of the times they're carrying guilt for not looking, you know, not being in a position to be able to care for their loved one. If the individual needs 24-7 supports in the community, okay, so the conservator or the family member can can carry immense guilt for not being able to do that, and then they project that guilt out onto the caregivers or the members of management that are trying to manage the case. Nothing is ever good enough. And that can be super frustrating for the managers, it can be super frustrating for the caregivers, but it's trying to explain to them, and even for myself, having to check in with myself sometimes when you get that, you know, that pissy email at two o'clock in the morning. Well, okay, this person's up at two o'clock in the morning, clearly they're dealing with something internally. Let's, before I respond, let's take a breath, let's talk with the managers, find out what's happening, and then we'll come back and trying to come back with care and compassion to assist that individual to know, look, everybody's trying their best for your loved one. And I think that's important to do as well for professionals to understand, you know, sometimes those those family members, those conservators, it comes across as being aggressive and angry, but they're just they're dealing with stuff internally. Dr. Ayla Wolf DAOM: 35:34 Right. The the human psyche is so complex. Jamie Arber: 35:38 Yeah, yeah. And with concussion, you know, a lot of the time we have a lot of parents reach out to us because their teenagers have they're seeing behavioral changes and personality changes in teenagers, and you know, individuals want to try want to work with our neuropsychologists just to get an idea of what's happening. Um, and you can see the fear and panic. Well, you know, fight, flight, fawn or freeze. It's they're in that state, they're looking for assistance and support. So you have to be careful in the way that you respond, you have to be cognizant of that because it's your kids. You you your concern and it's invisible. That's the other element. This is not a broken arm where you've got a cast, you're told it's going to take six weeks, then the cast is off. We can do another X-Way, and we know, you know, then we'll start doing some OT for movement, and then it's all back to probably better than it was before. The injuries that we deal with most of the time are completely invisible, and that scares a lot of people as well. Dr. Ayla Wolf DAOM: 36:40 Yeah, Dr. Ayla Wolf DAOM: 36:40 absolutely. Where do you see the next 10 years? Jamie Arber: 36:46 It's a difficult question because uh in Connecticut, you know, there's the the Medicaid waiver program is is fiscally challenged. That's me being politically correct. Um we there you know, in terms of the expense of caring for brain injury, it's an expensive, it's it's an expensive level of care. If you're going to be providing services in an institutional setting, typically that's for somebody that needs 24-7 and it's behavioural, it's $500,000 a year. To do supports in the community, the highest level is around about $300,000 a year. But for the Department of Social Services, they they're still identifying this as super, super expensive, but not reflecting back to how much it costs to put somebody in an institutional level of care. Plus, if you're 21 years old, 22 years old, why would you want to be in a long-term care facility? It doesn't make sense. So fiscally, it's challenging. It's a challenging marketplace. What we're seeing happen, especially since the pandemic, is a lot of the more the previously established providers, provider agencies that were doing community-based supports gave up their bricks and mortar and have moved more towards home care models, which isn't great for brain injury survivors, because you don't want to keep a brain injury survivor in the house all day. Because it's just going to lead to behavioral issues, depression. With depression comes anger, um, you know, bargaining. I want to go out. The staff member who's, you know, grossly underpaid because the finances are not being put into that waiver program doesn't want to take them out because they don't want to be driving because of the cost of gas. And then you have all these behavioral elements going on. So I'm kind of concerned where this all ends up in the next 10 years. The cost of service isn't going to go down. You know, every year minimum wage goes up, every year insurances go up, every year everything goes up. This is this is the way it works. So there needs to be an adjustment in the way in Connecticut, the Department of Social Services, and the state overall looks at long-term care and to make it more feasible for providers to provide those supports to the most vulnerable individuals. Um I'm hoping there will be a move away from this siloed mentality of disability, um, in that everybody has their own little niches and their own, you know, we've got a non-profit for this and a non-profit for that. Everybody's kind of working within the same pool with Medicaid, right? So if everybody came together and raised concerns about rates, that's a that's a significant voice. Even in terms of the disability community, now there's a huge number of individuals impacted by disability, not just in Connecticut, across the country. All of those individuals have votes, all of those individuals' family members have votes, all of those individual staff members and support staff have votes. And I think it's it's kind of I'm hoping for a larger organization of that body of individuals to ensure that they're getting their needs met. I know how much I pay in tech, I know how much a lot of the individuals that we provide services to paid into the system. When they need to get some of that back in order to support them, I think it's important that they can access it. And I, you know, you're re you're represented as a state in how you support your most vulnerable people. And in Connecticut, then they're not being supported well, unfortunately. Dr. Ayla Wolf DAOM: 40:26 Yeah, so it sounds like a bit of an uphill road. Jamie Arber: 40:29 It is. I think it's going to be an uphill struggle. We'll continue, you know, it's not the biggest or strongest that survive, it's those that are fastest to adapt. And we've been able to adapt consistently, identifying new cr you know, new ways of providing services. We, you know, we have lobbyists that we connect with for the company. So we that's part of what I do sitting down with legislatures and trying to educate them. Educate them to, you know, their own vulnerability in reference to brain injury. I mean, if you're going to try and private pay for 24-7 care, no matter how wealthy you are, you're going to start nobody can really afford to lose $300,000,000, $400,000 a year. That it just doesn't work. So making people aware and educating them in in reference to this population is super, super important. And even with the individuals that are that are being impacted by concussion now, the younger individuals, nobody knows what the future holds with that in terms of faster onset of age-related declines in terms of cognition and must like that. And there are programs out there that might become flooded. We're also seeing the opioid epidemic and the phenol caresis really hitting this population because all of a sudden we're having individuals drop onto the brain injury waiver program that have sustained their brain injuries due to phenol overdoses and the lack of oxygen to the brain that that brings about. Well, the waiver in Connecticut and most waivers around the country were not developed for that. They were developed to help individuals that may have had a car accident or a stroke. All of a sudden, you're getting super complex individuals dropping on that, you know, have substance abuse, brain injury, potential mental health that you're having to deal with that are that are extremely complex. My hope would be there may be, you know, at a federal level, some recognition that there may need to be combined funds for support services so the individuals get the supports that they need. Dr. Ayla Wolf DAOM: 42:29 Right. Trying to fit somebody into one specific box and say this is the only box you can draw from starts to get complex and those people. Jamie Arber: 42:39 Yeah. Very complex very quickly. Mm-hmm. Dr. Ayla Wolf DAOM: 42:42 Yeah. Well, your job doesn't sound easy. Thank you for doing it. Jamie Arber: 42:47 Thank you. Dr. Ayla Wolf DAOM: 42:50 Yeah. Dr. Ayla Wolf DAOM: 42:50 Is there anything else that you would like to talk about? Something that we haven't covered yet. Jamie Arber: 42:57 No, I think I think we've we've touched upon everything that we needed to talk about. Um I really appreciate the opportunity. Uh and it's it's a great platform that you've developed. And I'm I I'm sure the the community as a whole is very, very grateful to have you talking and raising awareness. Dr. Ayla Wolf DAOM: 43:16 Yeah, there are so many important programs to be able to shine a light on what is available, you know, state by state. Uh it's an honor to be in that position to to highlight all the great work people are doing to support this community. So happy to do it. Thank you. Yes. Well, thank you for sharing. I will put all of your contact information in the show notes. So if anybody in Connecticut uh wants to get in touch, they can do that. And um, I I hope for the continued success and growth of your program and offering those really valuable services. Jamie Arber: 43:53 Thank you so much. Dr. Ayla Wolf DAOM: 43:57 Medical Dr. Ayla Wolf DAOM: 43:57 disclaimer. This video or podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. The use of this information and materials included is at the user's own risk. The content of this video or podcast is not intended to be a substitute for medical advice, diagnosis, or treatment, and consumers of this information should seek the advice of a medical professional for any and all health related issues. A link to our full medical disclaimer is available in the notes.