00:00 Hello, this is Melissa, Hale-Spencer, the editor, the Altamont Enterprise here this afternoon with Todd Delmarter who works for Living Resources as the operation manager of brain injury services. Welcome. Hello and thank you for having me. Well, I'm so excited because every year we cover an event you have on brain injury awareness, a how was sent the park and I just feel that we could do more with awareness and I'd like to learn myself and also to have our listeners to learn as much as we can cram into a half an hour on brain injury. So just tell us a little first of all about the program at living resource.

00:44 Certainly the acquired brain injury program and living resources serves approximately 120 adults ages range from 18 to 65 and they come from a number of different backgrounds. Uh, doctors, lawyers, teachers, local heck razors, everybody in between. And the common thing is that they've all sustained some form of brain injury program covers three different counties and we have about 30 staff. We offer several different types of services. The first service would be case management. We also do independent living skills training and you'll notice that all of these services I mentioned are geared towards providing the person that we're serving with the maximum amount of independence. The trick is to give them the tools so that we can work ourselves out of a job someday. So independent living skills training would be a service that allows the individual to form goals through an assessment. We also have a very robust structured day program where we have a therapeutic groups assist with cognitive rehabilitation, family issues, a injury, acceptance and maturation. We even have a band at living resources through the structured day program called the brain waves and all the individuals play the instruments they gig out. It's just like any other band. Um, and we also offer a clinical services department. It's called community integration counseling. And that would be a more kind of like a clinical counseling or a cognitive rehabilitation. So with these 120 people,

02:32 are they living in facilities that living resources provides? Or are they living on their own or a combination? How does that work?

02:39 Well, under the waiver that we work under. And the waiver that we work under was established during the Clinton administration and it allows individuals to access services before they would legally be allowed to draw medicaid to do so. Um, the, uh, the stipulation is that they have to have their own residents. So community residences are for not necessarily forbidden, but they're really not okay for the way we do business under our waiver. Uh, our goal is to foster independence to reestablish a, some of the things that they lost as a result of the injury and to assist with putting their lives back together. And uh, in a community setting, uh, that's the way we, we achieved that in a group home setting. Those are all wonderful and great settings, but under our waiver those are really not acceptable. And I don't mean to imply that any other ways. Unacceptable.

03:38 Certainly. So yours is all geared towards having people live on their own and the community part of society? That's correct. Do you have services that are

03:48 parallel for that to help members of families or you know, whoever the brain injured person is living with to kind of cope with the changes that come about or. Yes, we, we're very fortunate to be able to provide a couple of different services that would assist somebody who's working in helping a family member reestablish their lives. The first one that comes to my mind would be a group that we have called a injury acceptance and maturation, which is an open to family members and it's a pure based support group where they discuss issues relating to family members, relating to the loss of friendships, the loss of jobs, loss of responsibility. So the profound thing about brain injury to me is that these were people that had whatever it is we have a holding down, a job, paying the bills, responsibility, relationships, things that we take for granted, but because of something that happened to them, be it an automobile accident or a stroke, uh, and it could be any type of injury or insult to the brain.

04:58 All of that has been either setback or in some instances flat out, taken away, and so oftentimes the people that we serve are struggling with things that they've lost that they can't even name anymore. You know, there, there was actually an interesting documentary that your listeners might want to look into. I can't remember the name of the individual, but you can find it by the title. It's called the loss of nameless things and it was basically made by a gentlemen who was a film producer, sustained a traumatic brain injury and then made a documentary about putting his life back together. Uh, so that would be something that you might want to look into if you want to learn more. I hope I'm not rambling.

05:38 No, that's great. And I'm going to look into it myself. I looked up a story we had done soon after that group that you mentioned. I am, had formed and I just picked out a couple of things that I thought you might comment on for myself and our listeners in the general public. One of the people was a member of that group at the time by the name of Dylan back. I'm looking for his first name here, Randy, and he was speaking to the group and talking about one of the things that most frustrated him, um, and he said this is a quote, they start to raise their voice and speak really slowly, like I'm a child and others in the group were nodding and agreeing with him. Is this something that you find that happens and what those of us that aren't dealing with it every day as you are?

06:35 Well, the, the account that you gave there kind of reminds me of an experience I had in my early days in traumatic brain injury and it really allowed me to see things from a different perspective. There was a gentleman who I was charged with getting out of a nursing home. He had had a stroke before his stroke. He was a college professor and she was transitioning from a nursing home into his home, back into his community. So it was my job to secure staffing, secure nursing, make sure that the home was in place. And to put all that together, and I knew that this gentleman was very, very, very nervous about the transition. He wanted to leave the nursing home, but I was just scared about all the different variables, understandably so. And I being a little wet behind the ears in the field. When I would meet with this gentleman, I sort of changed how I spoke, you know, we're speaking in conversational tones. But when I spoke with this gentleman, I used very gentle tones and it's going to be okay. We're working together as a team to get this done. And it was maybe two or three meetings later and the man, I'll never forget it. He looked at me and he said, todd, do you know what I don't like about you?

07:51 You said, I feel like you're a snake oil salesman. I feel like you're a used car salesman that's trying to get me to buy something I don't want. I apologize to them. I changed my behavior. I sort of explained Jag. I'm really kind of new at this and I was able to get him out of the nursing home in staff him. And really to the day that he passed, he hated me because he wasn't able to get past that. And, and I'm kind of thankful for that in a way. I mean we should never be thankful that somebody who's really unhappy with us, but that taught me something very empowering.

08:29 So brave of you to share that, a story where you're the butt of the joke, but it really makes the point because I think that is a natural tendency. It seems like you're helping someone if you slow down. And

08:43 I'm really, maybe it's not. I'm sorry to cut you off. The other thing that comes to mind with brain injuries that it's hidden. A lot of times if somebody is born with a developmental disability, you know there may be indicators that let you know maybe something's going on, somebody with a brain injury looks just like anybody else may act like anybody else, but maybe they have trouble processing what you're saying. Maybe they're disinhibited and they may say or do things without filtering them through or, or make different decisions. So I think a lot of times when individuals have brain injuries because it's hidden and people treat them like they would anybody else, that can be difficult for them as well.

09:25 I see. So you've got to find a middle ground there. You've got to be sensitive enough to see what that particular person can absorb and take it from there.

09:35 And at the end of the day we're all human beings and they deserve the dignity to be treated as such.

09:40 Yeah. Yeah. Very important point. I was just going to bring up one other thing from this story on the I am session and this came from a man by the name of Dan camp who had been a soldier in the United States army and really a hero. He had pulled a fellow soldier from her burning tank, um, and later was injured in a motorcycle accident. And would, he talked about, and I wonder if this is typical or if you've experienced this before. He talked about needing to go through, not just himself, but the people that loved him, you know, family members or close friends. I'm mourning process to let go of the person who had been the person that he had known and that they had known and loved to let those expectations go and he described it as a mourning process and then to start fresh with who he was. Now have you experienced that before?

10:46 I have certainly seen such things blossom in the people that we serve and really that that's. I wouldn't say that that is a cornerstone philosophy behind what we do, but it is something that I noticed as a pattern. The individual who sustains a traumatic brain injury along with the loved ones are not only morning for or not only in a state of loss for the accident or for the impact of that accident or the trauma of the accident, but oftentimes the individual who has sustained a traumatic brain injury has a change in personality. So they are no longer the person that they were before the injury. And so if you know, for example, if you've known somebody for 20 or 30 years that you've spent your life with them, they sustain an injury of some sort and their entire personality changes. That's going to change how you approach them and, and it's going to change near everything about how their life is shaded.

11:46 And so that does result in a, a secondary mourning period, uh, a sort of loss. So not only has the individual and the family member had the brain injury occur, but the individual that existed before the brain injury is gone. They may return, there may be glimpses that return. They may return entirely. It, it's really different for everybody. I mean, I've seen wonderful outcomes. Like I said, our goal is to get to a place where we're out of a job with these folks to give them the tools to succeed. And part of it is recognizing that who they were is changed and who they are now is something entirely new.

12:27 So do you have any kind of statistics or even just anecdotal evidence on how many people actually recover? I mean they never get back to who they were but are able to function, um, in a way that's good for them and their families and society. And I don't

12:49 have statistics before me. I can only speak from what I've observed in my time in the field and I would say that 35 percent of the people, maybe 40 percent of the people was good rehabilitation, will be able to decrease services and get into a place where they can retrieve their independence.

13:10 That's marvelous guy from what I would just quickly trying to breed it. It was a big switch. I understand that the 19 nineties, it's called the decade of the brain because I guess there was some early sense of intervention after World War One when so many soldiers came home with injuries, but it really wasn't until the nineties that there was a sense that you could rehabilitate someone with a brain injury and if you can just kind of describe what rehabilitation consists of. I'm sure it's different for each individual, but how that will do will be different levels of rehabilitation. In my mind,

13:49 when somebody is first experiences a traumatic brain injury, they will be inpatient perhaps at a facility similar to sunny view in Schenectady where they learn how to walk again, learn how to talk again, learn how to feed themselves again. The type of work that we do is, is more community based and that would be a sort of working with them to reclaim what would I call, like the activities of daily living, how to get back into paying your bills, paying your rent, working on interpersonal relationships, maybe going back to college, maybe finishing college, maybe being a good father or a good mother. All of those things. So it's just, uh, you know, I would say that right after the injury it would be an intense sort of rehabilitation that focuses on reestablishing the physical abilities of the individual. Uh, and then we come in and we focus more on putting those things into play as it relates to the community and, and reclaiming the things that they lost as a result of their injury. And does it involve strictly

14:52 human to human relationships and counseling or is there some kind of medication involved? Is there,

14:58 some individuals will take medication for different parts of the brain injury? Some folks don't take any medications at all. It's, it's really different for everybody and in according to what their needs are at the time.

15:12 Well, I've also loved to hear just a little about you and how you got into this field. If you could just back up to the sort of beginning of your interest in this field and walk us through the path.

15:24 I think it was 1991 or 92. I had been asked to leave the Sunni I was in because I wasn't doing well was I got an academic dismissal and I'll never forget the day it came home. My mother was waiting for me when I came back from my summer job and she showed it to me and she said, you know, uh, I don't know what you're going to do now, but you can't do it here. Uh, if you're not going to college, you need to start your life. And so she gave me two weeks and I'm very thankful. She gave me two weeks to find a place and to find a job. And there was no hate. You know, my mother loved me very much and she did a very good thing for me and asking me to do that. And I took a job at a local arc doing one on one behavioral interventions.

16:13 Uh, I worked in that setting for a few years, moved to a day program, uh, my wife and I did home care for about five years for a gentleman who was institutionalized for most of his life and lived with us towards the end of his life. And I started in brain injury, uh, somewhere around 95 or so. And it was basically as a, you know, a friend of mine said, Hey, I know this guy that needs some help and here's this company that maybe would hire you. And I went for an interview and just worked directly with this gentleman who had a sustained a significant brain injury as a result of an accident. Literally I would have to introduce myself to him every day. And I always thought the amount of trust that it took for him to not know who this guy was showing up everyday. Like, Hey, I'm here to help. And he couldn't remember the day before and you know, and I worked and I would take promotions where I could and eventually was able to go to work for living resources as the operations manager of their program. So I really don't have a degree in traumatic brain injury. What I've been able to share with you today and, and anywhere I've gotten has been the result of experience. Thanks to my mother

17:29 for giving me the boot experience may be the best teacher. So what has kept you it all this time because I imagine it's quite draining sort of

17:42 career to have. For me, it's, it's about alleviating human suffering and that's the truth. Um, there, there's no shortage of trouble in this world and whenever we can shine in such a way as to make somebody else's walk easier, I think that's good. And I'm fortunate to have the type of job where I can do that, where I can alleviate suffering directly by helping other people reclaim their lives and get better. So for me, that's, that's really the directive.

18:18 It's a tall order. I'm going to see if you can unpack some of the things you told us at the beginning and one of the ones that most interested me and we've taken pictures of the brainwaves, this band. Can you just tell me a little about that, how that got started and yeah, because you mentioned you were in a band yourself. I played music

18:40 and actually I've played with the brain waves a few times myself. The brainwaves was started by a man named Robert Marcello who still works for us at living resources and he's a local in my mind, Albany punk rock legend, you know, alternative music legend. He's played in a lot of bands and he started the project and you know, they started by learning I think blue suede shoes by Elvis and you know, moved on to all kinds of different songs. And what rob did was, you know, encouraged them to learn how to play the instruments. Took the time and when rob moved onto different opportunities, it was taken over by the lady who runs it right now. Her name is Becky Dzerzhinsky. Oh. And she is taking a kind of in a different direction. She's adding a lot of new material or you know, what I would call a new wave material, even stuff from the eighties and early nineties. And the thing that I like about it is that whenever I've gigged with the brainwaves, um, it's, it's like any other band I've been fortunate enough to play with. There's band antics, you know, there's goofing off and cutting up just like there would be in any other band. And um, it really appears to be enjoyable for everybody that does it. They always look like they're having a great time. What do you play with your. I can play guitar, Banjo, Mandolin, again, no classical training. Just picked it up and figured it out in high school because

20:12 I wonder, and maybe this is too much of a leap, but especially if they're people that are hampered after their brain has been injured with language. If music and I don't know enough brain science to know of it from a different part of the brain or if it can become a language that you can communicate with, if you're not able to use speech the way you had been. It's my understanding that music is governed in one part of the brain. It speech, understanding language processing words is, is handled in a different of the brain.

20:48 And it really just depends on where the insult to the brain was and how it's affected. Um, if I could give another good example, there's a young man that we serve who, uh, was from a different country and he was a firefighter slash soldier in that country. That's how they, that's how they handled their military. They were kind of like firefighters and civil defenseman Keno a country that was just, he was from Puerto Rico and it was a lot of gang violence there. And he actually, one Friday night on his own time was shot in the temporal lobe. A five of his friends were killed instantly. It was a fifth shot that was fired, ricocheted. And because the bullet last velocity, by the time it hit him, she survived it, it didn't, uh, it didn't kill him, but the temporal lobe, the side of your head, basically you think the side of your brain, that's where your understanding of music and hearing comes in.

21:48 And this was a young man who played guitar and enjoyed music and right after his injury, you know, I was talking with them just a couple of weeks ago about it. He said the music, I couldn't understand it, it was just noise. So you know, his ability to process that went away. But the good news is, you know, he's putting his life back together and he's starting to play a little bit to guitar, you know, and he's kind of coming out and you know, the biggest challenge for that young man is the language barrier. You know, when I first went to go meet him, I would pull out a Spanish American dictionary and write out what I was going to go say to him before I saw him in. And he's really helped me kind of come a long way too.

22:29 Well, what I like just from the little I know of you in this conversation is how you don't seem to have the attitude. I'm helping you. You have this attitude of kind of sharing with the person that you're working with and getting, getting some richness yourself. That might answer the question, how have you been at it for so long? Yeah,

22:52 I mean on the one hand you could say that working in the field demands a certain amount of energy, but if you look in the right places, it's. It's quite easy to get your batteries recharged and a lot of times it's. It's all about looking at that person and just because they've had a traumatic brain injury, it doesn't mean that they don't have anything to offer or nothing that they can pass on or teach us. They're still able to teach us a great amount and one of the most profound things I've learned is to not take anything for granted and to be thankful for every moment that we have in such a way that we can continue to give back because it can change quickly, quickly and everything that you know and understand can stop with an accident or something that is just way beyond your control.

23:42 So it tends to make me change in an instant and it tends to make me quite humble and. But for most of us, I think it would be this incredible burden. Just the few stories you've shared have individuals. I mean, I was just wincing when I heard about the ricocheted bullet going in the side of his hand. I mean, you must have to absorb all that personal hurt from each individual that you're working with will. Sometimes. I find that I'm a bit more empathetic and I don't mean that there are times when I'm on empathetic in a caustic way, but there are cases that definitely touched me and certainly some that I'm able to empathize with M and a lot of it is, you know, just depends on maybe some of the things you have in common with them or uh, what has happened to them. But the truth is, is that if, if the people that I served knew that I was feeling sad or empathizing or maybe not empathy, maybe that's not the right word, but if they knew that I was sort of struggling in bummed out, they would just be like, what's wrong with you?

24:53 Snap out of it. Everything's cool. We're okay. And so I really try to approach it from a way that it's no different than I would approach it with anybody else. And we all have challenges and we all work through them as best we can. And that's sort of how I shelf it off. That's a great philosophy. Are there any particular individuals or people that you've helped that stand out in your mind? Is having, I'm really maybe not become the person that they were, but you know, I started at a level where maybe in earlier times or without the kind of programs you offer would have just been warehoused in a facility or locked up in an attic room more so horrible fate than that. This is turned them around on a path. That's good. I would say that every individual that participates in programs similar to mine a do so under a set of rules that's designed to keep them out of nursing homes.

26:06 That's really the goal is, is to divert them. Before that came into play, before the Clinton administration brought the traumatic brain injury waiver into existence, uh, if somebody was 19, 20 years old and got into a car accident, they would be institutionalized in the nursing home or, or something similar. So really when a programs like mine came about in the early nineties, it allowed those people to get out of nursing homes and to get back in home into their homes and to receive the care that they need. And you know this, this might sound a little Kooky, but I've often thought that it's sort of the future of home care in some ways. You know, they found that a serving somebody in the community is, is approximately 27 percent cheaper than putting them in a nursing home and it's better service.

27:02 The money works with the best. How Ram, you've mentioned twice now. Maybe you could just explain a little to me and our listeners what, what happened during the Clinton administration? So during the Clinton administration, there was a law enacted that it allowed individuals who have sustained a traumatic brain injury to draw from their medicaid account to pay for rehabilitation. Before that was an act enacted, you had to be of a certain age, I think it was 65 before you could draw medicaid. So if you had a traumatic brain injury at 19 or at 30 or if you had a stroke at 40, you're toast. You can't get Medicaid until 65. So it was that waiver that allowed individuals to draw the Medicaid to pay for the community based services offered by my agency and others like them. Excellent. Well our time has gone so fast.

27:56 Do you have any closing thoughts, any important things I didn't ask you about that I've really enjoyed the time. Uh, I'm always happy to discuss traumatic brain injury, uh, and, and assisting individuals. I can be contacted through living resources if anybody needs any assistance. And really at the end of the day, uh, you know, at risk of sounding redundant, um, you can learn a lot from somebody that's had a traumatic brain injury and it's not always in. Oftentimes it is not the end of life. It can be put back together. Things can be put into play and into place and you can regain the things that you've lost. The brain is neoplastic. That means that it can heal. If one part is insulted with good rehabilitation, the other part of the brain will take over for what got hurt. And so in my mind, if you get the right assistance at the right time, it's always, always a good prognosis. That is not redundant. That is splendid. Thank you. Thank you.