 Abledon Air major sponsorship was given by Green Mountain Support Services, empowering neighbors with disabilities to be home in the community. Also sponsorship was given by Washington County Mental Health Services, where hope and support come together, and Champlain Community Services of Vermont. Welcome to this edition of Abledon Air, the one and only program that focuses on the needs, concerns, and achievements of the different label. I've always been your host Lauren Seiler. Arlene is off today. Thank you to our sponsors, Green Mountain Support Services, Washington County Mental Health, and Champlain Community Services. With me to discuss the importance of services for traumatic brain injury is Green Mountain Support Services and their brain injury clinic or department. Would you like to introduce yourself? That sounds great. Thanks for inviting us. So I'm Barb Winters, and I'm with the Brain Injury Association of Vermont. We're a statewide nonprofit organization that is started about 20 years ago to work by a survivor to help individuals with brain injury to access community services and to educate themselves and to do support groups, and all of that. So being a nonprofit, we work, we often get confused with the state TBI program. We aren't part of state government at all, although we work with state government on a lot of different projects we aren't part of. Your name is? Eric Page, and I'm with Green Mountain Support Services and the intake coordinator there. We're what's called a specialized service agency, so we're a provider for people who are working through the state Medicaid program. Okay, now, what is brain injury, define it? Thank you. That'll be me. I'm kind of the education person for the Brain Injury Association. What a lot of people, when they think brain injury, say TBI. It's more than TBI. So acquired brain injury is the umbrella definition, and that is any brain injury that happens after birth that is not congenital or degenerative. Explain what you mean by those two words. Thank you. I will. I'm sorry, it's just going to be a lot of questions. Yeah, no, that's good. So what I mean by congenital is things like ALS, also known as Lou Gehrich's disease. That is congenital. Great baseball player. Right, and then a degenerative would be something like Alzheimer's disease or any of the dementias, as well as things like MS. Epilepsy? No, epilepsy is under the brain injury umbrella. The number one cause of epilepsy is brain injuries. Let's you know. So there's that umbrella, and that umbrella includes all brain injuries, a subset of that is traumatic brain injuries. When you say traumatic brain injury, it is an external insult to the brain. So whether it's the football player's heads, the motor vehicle accident, the fall and the number one cause of brain injuries is falls. I'm going to interject for a minute. Yes. Stephen Hawkins, there was a movie based on him. The Theory of Everything. He had, he fell, had injury to his head. I remember the story. He had traumatic brain injury and ended up in a wheelchair. You know, great brain did a lot of things for science. Is it always like if somebody gets hit to the head, a sports injury, a boxer, for example, they were trying to outrule boxing. Is it always a traumatic thing that happens to cause TBI, traumatic brain injury? So for, let's say it stands Stephen Hawkins for a moment. I think that his fall was a part of another disease process, which is what he was suffering from, which ended up creating his disability. But he did have a brain injury. Falls are, you can get brain injuries from falls. Now, so with brain injuries, that when you talk traumatic brain injuries, there's three different levels, according to the world. And that is mild, moderate, severe. So mild is where your concussions fall in. And that's 75% of brain injuries are that in that mild category. And then the moderate is, you know, like the TBI program that Eric works for only works with individuals who have moderate or severe brain injury. Because the mild, quote, unquote, mild brain injury, that brain injury leaves you able to live independently, which their program. It depends. So when you've seen one brain injury, you've seen one brain injury. Every brain is unique. You and I could have the exact same accident. And it can affect people in a different way. Totally differently. Yeah. Yeah. So how long have you guys been in existence through Green Mountain Support Services or working with Green Mountain Support Services? Do you want to talk Green Mountain? Well, Green Mountain Support Services, I believe it's over 20 years. They started Sterling Area Services and became Green Mountain Support Services a few years ago. And the TBI program is one of several programs that we have. And then we work with the Brain Injury Association of Vermont and the state program to try to bring everything together. We all have different things that we can offer information. You know, our clients can contact the Brain Injury Association of Vermont. So tell me a little bit. I see you brought up not a cheat sheet type of thing, but it is a cheat sheet. Can you tell me some of the services that you guys provide? Well, they're different. Yeah. Yeah. There you go. They're very different. So that's the Brain Injury Association. So what we tend to provide is if someone has a severe brain injury and can't live on their home, we set up a shared living provider situation for them so they would be living in someone's home. And you're having them be independent at the same time? We're having them be dependent as they can be. Yeah. And the shared living provider, their job is to meet that person's needs. They get paid for that. It's actually a tax-free stipend that they get. And that's through the Medicaid program. Then for people with less severe injuries, sometimes we provide a life skills aid. So someone who comes in and helps them with maybe their finances, takes them grocery shopping, whatever sort of things they need. Help them like if they have to pay rent or they have to write a check. Right. Something of... And that varies greatly from person to person if they need that. Can people with brain injuries still... I know it might be difficult for them, but can they still have jobs and work and that type of thing? Or how difficult would that be with a brain injury? Yeah, and it depends on the extent of the brain injury. We actually have a supported employment program. So one of our clients, he can work, but he can't drive. So we have someone who drives him to his job. Or possibly would give him a medical ride to a doctor's appointment. Can you serve us? Just each program is tailored to the person? I don't drive because they don't give anyone with epilepsy. Because myself being having cerebral palsy, despite everything, you know, I'm independent. But they don't give... No DMV, as close as I know, gives a person with epilepsy a driver's license. It's not a safe thing. Right. Yeah, so I think that one of the things that the Brain Injury Association has is support groups. And I co-facilitate one of the support groups, the Burlington area one. And in our support group, there are individuals who are working. There are, I mean, it's such a hodgepodge, but they really do. And some people will tell you that they're better after their brain injuries because prior to their brain injuries, they were going 24-7 non-stop. They weren't really enjoying life. And after their brain injury, it forces them. So that's for some people, those people that look on the bright side. You don't want to force anybody to do something. No, but it's, no. The brain injury forces them to slow down. Not people. The brain injury is saying, the brain is saying, oh, no, I'm done for the day. If you can only work two hours, you only work two hours. Yeah, yeah. So for some people, it has been a blessing in disguise in a way. I mean, those are the people who take every negative thing and make it into a positive. But you can. There's an individual who comes to the support group sometimes who had to totally change her career. And in the process, found something she really loved doing and now is actually happier. What do you mean by that? Well, she was a high level IT person, so worked on computers, solving problems, and she couldn't work on computers anymore. What she, in the exploration after her brain injury, what she came to was, I love plants. She became an herbalist, and she loves being an herbalist. She has a great life now. She's a gardener, that type of. Yeah, yeah. Now, in terms of brain injuries, okay, so it slows the person's life down, but doesn't slow them, right? It doesn't slow, it depends on the situation. Does your program now, federal funds are sometimes being cut for certain things. Yeah. Sorry to make you, right? I know, sorry, I know. Is your program control, well, not control, but does Medicaid give money towards this type of program? We're funded through Medicaid, so the state, we're not part of the state, but the state distributes the money towards our organization, whereas the brain injury associations are private, non-profit, that's... Right. How is it knowing that the administration that we're in now, as far as the president, he wants to cut this program that program? What is one thing that you can tell the administration to say, hey, we need this, because we need more programs like this. You guys are doing a fantastic job helping folks. So, is it controlled, you guys get funding through Washington DC? Well, through Medicaid, yeah, the thing is, if you look at the state website, you'll find that since state of Vermont went to this shared living provider model, not just for TBI, but for folks with developmental disabilities or older Americans who can't live on their own anymore, it actually saves the state a ton of money, so it's a very cost-effective program. How so? Well, you're not running large institutions, you're putting people in individuals, you're giving them a better quality of life. In fact, the most recent report that they did found that people in the larger homes of six or so, they're fine, but actually the smaller homes with one or two are more cost-effective, and the people have a better quality of life, so. Can you explain about, since I have this... No, it's cheat sheet. Cheat sheet. Referrals and resources are extremely important. You take and we're fine. How does that work with your agency? We both do it in different ways. So, let's say somebody calls iStaff our helpline, which is a toll-free number, and one of the things somebody will call and they'll go, my brother has just had a brain injury, he's going to be coming back to Vermont from, let's say, Dartmouth, and what are his options? And at that point, it might be, I might call Gia, if he's from the area, whatever area he's from, I will try to find, what are the resources in that area that they want to relocate, because I'm a big believer in getting close to your support system. So, sending people out of state away from their families and their support system isn't a good quality of life. What do you mean by that exactly? If the family can't visit, then the person can become very lonely. And also, there isn't anybody... Sometimes it's really important for family to be around. Yeah, incredibly important, and also to be keeping an eye on the care, to be knowledgeable about what is working and not working, because they know that individual the best, so that they can say, oh, he keeps throwing his beans at you because he's always hated beans. Maybe it's a person who's non-verbal after their stroke, and the facility or the home is saying, oh, he's got a behavior problem, he's throwing beans at us, and the family can come in and say, well, he hates beans. I'm a huge advocate, right? Outreach and education is extremely important, especially now, because years ago, when they used to have the situation where people with special needs were institutionalized, and then taken out of institutions, how important is outreach, advocacy, and all of that within your organization? For the Brain Injury Association, it's probably the nut of what we do. So for the advocacy piece, we had staff that went down to Washington, D.C. to advocate with the state person, and a survivor to advocate for more funding for brain injury programs. There's a lot of organizations that are in D.C. who are advocating for federal funding, whether it's the National Brain Injury Association or it's the National Association of Head Injury Programs around the country. Nasha, there's a lot of different organizations that are doing the D.C. stuff, and once a year, we'll join them and just enforce from all around the country, we'll arrive in D.C., and we'll go, hey, you've got to pay attention, and the survivors are there to tell their stories, because that's the most compelling way. So what we do, like on our website, if you go to the Brain Injury Association website, we have a person who does YouTubes, a volunteer who's doing YouTubes of survivors telling their stories. And it's really important. And actually, one of our clients will be on that soon. Not one way that we're working together, though, is we're working with the state on a medical injury. The state legislature, because it says, whoa, you're doing the legislative advocacy too, right? Is that one of the same? Right, we, the Brain Injury Association does, and here's the thing, we can do stuff that the state government can't do because state government funding limits a lot of their, they can't testify, like, they can testify about budget in the state legislature, but we can testify about services and what is needed. So there really is, and they look to us for that, to do things that they can't do. That's definitely a symbiotic relationship. It is. Okay, so memory loss, I know I'm jumping around. Head injuries and memory loss. Explain a little bit about that particular. So some people, after their brain injury, usually there's a couple of types of memories. One is you lose the memory for a short time after the injury, maybe you're in a coma, whatever. So you don't have that memory. Some people lose retrospective. There's rare, but there are cases where people lose all of their memories. I met one person who, after she was hit by a car, lost all of her previous memories, but that's rare. So memory, so the brain trying to describe how the brain works to kind of encode things, if you can't pay attention, which is oftentimes that part of the brain is damaged. If you can't pay attention, it can't get passed. It can't be encoded in the brain. So this t-shirt actually says that this t-shirt was done by a survivor in my support group, and what it says is, can you read it? It really sucks to be living a life when you can't remember the life you're living. So that was a very high-functioning brain injury survivor who just has, she has to write everything down, and it's tough for her to remember appointments and all of that, but she can do it with strategies. So she gets help remembering appointments and that type of thing? Well, she has strategies. She has, she writes. What type of strategies? She uses a phone. A lot of people these days, the smartphones are your biggest assistive technology that you have, so people, and usually one alarm isn't necessary, isn't enough. So I remember in one support group, an individual said, well, I said, I need to take my medication, right? So I set my alarm for my medication. It rings, and I think, oh yeah, gotta get up and get my meds. Well, I have to get up and eat breakfast. Yeah, and I forget, you know, the alarm rings, I remember it, I forget, and I'm still sitting there in my chair. And then he sets a second alarm five minutes later, and it rings, and I go, oh, that's right, I was supposed to get up and take my meds. And then he sits back in his chair and forgets it, because no short-term memory. And then the third alarm rings, and by that time he's so annoyed he gets up and takes his meds. So that's one individual strategy, just setting multiple alarms. There's so many different strategies for memory. In terms of, now what if you can't help someone with a particular brain injury, what do you do then? Oh, so hard, and there are those cases. It's really, have you run into those cases? On the helpline, yes. And there are people who fall between the cracks. They earn too much money to get Medicaid, or services through state programs, yet they don't earn enough money to really live on. Maybe they've got SSDI, but maybe they've been rejected for SSDI. So what first thing we try to do is to help them get what services they can. But in a lot of cases it just isn't enough. They're losing, they've used up their savings to because some people think that if they... What do you mean by falling through the cracks? I'm sorry to interrupt. Yeah, that's okay, no. I've been there, sorry, what exactly? Yeah, falling through the cracks is that there is no services to help that individual at that time. And so, as hard as it is, you have to say that. You have to say, really, let me try this, let me try that, let's get you in touch with this person. But deep down, you know, there's nothing. Example, I came from New York, New York, we can't help you, you have a job, two college degrees, you're going for your third. We can't really help you. So I help people, you know, I'm not gonna complain. But there are those that fall through the cracks like you said. And that's the hardest, those calls are the hardest to take. And I keep, so that person I will try to keep like on my list of people to call back if I can figure out anything to help them. What exactly is your community brain injury consultant program? Ah, thank you. So what that is, is we've gone through several federal grants. And every time we get a federal grant, we have to change those services that are provided under the grant can't be provided anymore. The Brain Injury Association of Vermont has three part-time people, including me. So we can't provide a lot of services without grant funds. So the last grant fund when it ran out, the three year grant ran out, it meant we couldn't provide a service that was really needed. And that's where the community brain injury consultant came in, is what we can do, what we can afford to do through fundraising. And what that is, is that if an individual with a brain injury, if their team is willing to meet with me and the individual, I will not meet without the individual with a brain injury. That's just not my style. They have to, they're centered. There's a thing where they say, no meetings with us, without us. You got it. Nothing about us, without us. And that's really a core of my- And confidentiality is extremely important when it comes to medical stuff. It is. So let's say, for example, a team called, a person on a team called, and for an individual with a brain injury, and they said, what can you tell us? And I said, well, if you want to meet and kind of brainstorm ideas for this individual, let's meet. And so we did. We met with the psychologist, the case manager, the family, the individual with a brain injury, of course. And this person was just involved, so they're parole person. So we met and we kind of brainstormed what kind of services were out there for that individual. Beyond that, we can afford for me to go to one meeting. And then beyond that, it has to be on the phone. And I'm more than willing to answer questions on the phone and to try to problem-solve. Okay, so, you know, what events, you know, I understand that you guys have several, you're doing several events. What events are you guys doing to raise awareness? Whew, the walk and roll. Yeah, that's the thing. The walk and roll is one of them. Yeah, and the nice thing about the walk and roll is that the walk and roll will walk through, it'll start at the city hall park in here, and not the city hall park. The high school, green, let me see. Montpelier High School? Montpelier High School, walk up Believ onto state straight, take a group picture on the state house steps, and then walk back and have an ice cream social. The banners, the signs, walking on the street will raise awareness. People in bright colored t-shirts, so we'll raise awareness there, as well as individuals, you know, will talk with each other as they walk and roll. It's called walk and roll. So it's Saturday, May 18th, 2019. Yep. This might air a little bit after that, but that's okay. Okay. Because we can get, we'll be getting, I can go get footage of this event. Oh, good. Good. So for more information on the brain injury, is the Brain Injury Association walk and roll, you can register at give.classy.org, forward slash walk and roll 2019 Brain Injury Association of Vermont. That's great. And you can still donate after the event. Right. Yes. So that's a key thing. Our organization will be having a team in the event. So email support services will be there. Yeah. Oh, yeah. We have, I think a team of about half a dozen. We're about halfway to our fundraising goal. Now, what are some of the other support groups that you guys are having, as well as the community brain injury? I mean, the, sorry, the annual Brain Injury Conference is also important. It is important. That is like the brain injury world of Vermont, all getting together in one place. And it's, there's sessions and I put together the program with the help of a wonderful committee. Thank you. That is Tuesday, October 8th at the Double Tree Conference Center in Burlington. Would like to be there? Good. Yeah. Yeah. Put it on your calendar. You can get some footage of that. That'd be wonderful. Keep us busy. Yeah. The other thing about that is that not only are there the sessions that people can learn from, but there's also the exhibitors, like GMSA will be an exhibitor there. And so you can go, individuals who are interested in services can go and talk to the providers, which is a wonderful thing. Yeah. Because without advocacy, without these conferences are important to get information without them people would be kind of lost. I know. I know. So long and short of it, why, okay. So do you give referrals to people, like if you can't help somebody, do you send them to another agency that can? Oh, in fact, 90% of the time we can't provide any services for them. So therefore we're sending them to someone. Because in my case, if someone doesn't qualify for services, I might send them to them saying, well, you don't qualify for our services, but they may know of a support group or some other, you know, at least we give them some. Just bouncing around. Well, we work together though. Right now there's a traumatic brain injury task group. Advisor. Advisor group, right. I'm on and we're working with the state and with the Brain Injury Association and kind of seeing what everybody's needs are. They recently did a survey where they did a needs assessment from providers, survivors, and friends of family of survivors. There are some other organizations that for a month like Pride, TBI. What's the difference between that organization and you guys? Good. Okay, well, the Pride and Choice are actually both focused a lot on brain injury. Brain injury is one part of the organization I work through. We're all specialized service agencies, which means we can serve throughout the state with the long-term Medicaid and you have to go first through a designated agency. And that's based on where you live. What do you mean by designated agencies? That's a state term, I guess. A specific agency. Yeah, same, yeah. If you live in this zip code, you have to go through here. Okay, is there anything, what are the future goals of Grimoire Support Services with the Brain Injury and your agency? Sure, well, we're actually looking to expand the program because there is a growing need. How so? More and more people getting injured and some of the data shows that once you have a brain injury, you're more likely to have another one. So someone who has a concussion in high school might be more at risk of having another brain injury down the road. And a lot of them go undiagnosed and that's one of the things we're finding out through this task force because it is not just organizations but a group of survivors as well, that a lot of them are misdiagnosed initially and they weren't given proper resources more told what to expect. I just know most of you. Future goals of your... Well, one of the things we have a lot of goals, we're working on with the correctional system as part of a federal grant that the state, the Department of Corrections... The Department of Prisons. Well, actually, the Department of Corrections is more than just prisons. JLN prisons are all together in Vermont. We're one of three states like that. And then, so we're working with them as part of the state, the state got a federal grant. So people with brain injury... We want to figure out... In prison? Oh. Undiagnosed, our jails are filled with people with brain injury. Many of them are diagnosed. That is something I did not know. Oh, yeah. Yeah. Okay. It's really... Fights, crime, and all that other stuck in cars. Or abuse as children. And then they go on and... No, they don't get the kind of help they need, and they go on and they fall into that system of crime. So, behaviors, you know, so that's one piece. The other piece is concussions. We have a great concussion task force that we've put together a toolkit that is going to... The new version will be on our tool, on our website soon, but we have an old version on our website. Now, here's a question that I'm going to just throw out there. If you have a brain injury and in prison... Yeah. Do you get... Do they give you medical... All the medical services more, or more medical services that you might need due to certain circumstances? How does that work? It's tough. They're grappling with that. The Department of Corrections is really trying to grapple with that. I'm sorry to ask you that question. They're trying. They really are trying, but currently I would say that in most cases, they are not getting services. So, it goes by state by state, right? Oh, yeah. So, if you're in... Riker's Island, for example, in New York, one of the toughest prisons, you might not get... Because there are people with specialties in prisons and wheelchairs and so on and so forth. So, how do we... As taxpayers, how do we go and say, okay, we need to help these folks who really need it? How do you... Justify it? Justify it. One of the ways to justify it is the... If you can decrease rescindivism. So the people... Which is... The open door, get out of jail, go back in jail. Get out of jail, go back in jail. Every time they go back, it's taxpayer dollars. So if we can, when they... One of the things that we're going to be working on with this is a three-year grant. So it's gonna take... Nothing's gonna happen fast. But one of the things is when they get out of either prison or jail... Or you fall through the cracks due to disability. Well, yeah, but that there's services there that get it that can help you so that you don't come... There's some people who they feel safer in jail. It's sad but true. It's hard to imagine. Eh, okay. Yeah, I heard an interview with somebody the other day on VPR that he was saying, I'm actually more comfortable in prison because I know the rules. So what we wanna do is help them to integrate into the community better. That's one of the goals. That's an eagle. But falling through the cracks, so how do we, like I said, similar to the question I just asked. Falling through the cracks is a difficult thing for a lot of people. So I know you're cringing and sighing. I know, I know. And it's kind of sad, but are there more fundraisers planned to get more money for this stuff or? Yeah. What we would like to do is, a lot of the work we're doing now is laying the grounds for developing the numbers so that we can, if we have the numbers, then we can go to the funders and say, listen, this is a problem. Here's our goals to work on this problem. And so therefore, so you have to lay the ground of first getting the data to be able to then go for the funding. Whether it be federal, state, or private. And that's part of what we've been doing with the surveys, finding out from people who've been through this, what did you receive, not receive? What help would have made a difference? Are you aware of these services, these organizations? And we're finding a lot of it, particularly with the doctors, they're not trained in this necessarily. So in terms of, for example, another thing about falling through the cracks is, one of the questions I ask usually of all my guests is, what are the misconceptions around people especially when you first meet them? Yeah, yeah. Well, that's, yeah, that's very good. Because a lot of times, if you say brain injury, people have this image of their head or something. Or you say development. Another thing I deal with cerebral palsy, there are different types of CP. So, get to know the person first. Right, right. And it's very similar with brain injury. Yeah. And you know, some people- Misconceptions. Like, oh, you have a brain, I'll give you an example. There was a gentleman that I met a long time ago. His name is Bill Porter. Very famous story. There was a movie made door to door. There was a movie done about it, despite his cerebral palsy. The Watkins Company didn't want to give him a job at that time in the 1950s because, oh, you have a brain, you have a problem. We can't hire you. Why not? So they gave him the worst route that he was able to be a salesman. And then became salesman of the year, someone and so forth. We need to start realizing that, despite challenges, people are as normal as they can be and want to be independent. And that's part of our primary mission, is to find out what the person's goals and dreams are and help them achieve them. Help them live the best life they possibly can. But the flip side of that is the fact that individuals with quote unquote mild brain injuries, which believe me, if you have a mild brain injury, it doesn't feel mild. I struggle sometimes too and I just deal with it. Right, but they look, you're walking down the street, people aren't gonna say, oh, that guy has a disability. They're just gonna look at you and go, oh, there's a person. The individuals with those mild brain injuries walk and talk and look just fine. Is that invisible brain injury? Or invisible challenge like deafness. You got it. It's an invisible challenge and the world doesn't give them a break lots of times to help them to, the woman that did these t-shirts is an incredible athlete. So she, you would not look at her and go, oh, she's got a brain injury. I need to give her a break. I need to make sure that she writes down what I say so she'll remember it. You wouldn't think that, but. Or maybe, no, last question. Okay. Right, because we're running out of time. Americans with Disabilities Act. Yeah. It's vitally important and it's changing. On the job, for example, what are some of the accommodations that bosses are doing with people with traumatic brain injuries on the job? That's a good question. Actually, our support. Oh, it's not a bad question. Well, no, it is. That's a great question, but our support and employee person actually would be a better person to answer that, because I don't work directly with that. Do you have anything with, nope. Yeah, there's. Like I said, we can provide transportation, because some people, we actually do need someone by their side while they're working. Right. A good job coach. Yeah, we can do that as well. But they may need, so let's say the individual is somewhat brain injury, one of the key things that happens when the signature symptoms is fatigue. Your brain is working hard to work around the damaged areas, so you've got a lot of fatigue. Signature symptoms in terms of? In terms of the brain injury, just it's fatigue. So the individual may need to take a break. And. Or an extra coffee break. You got it. Or walk around the block or something. Yeah, they may need to just lay down for 15 minutes, just to kind of re-energize. So that's a piece of that an employer might be asked to do that as an accommodation. And that is one piece, and another piece might be a transportation. It might be that they need to have signs all over their workspace to remind them you're doing step one, step two, step three. There's a lot of different accommodations that you can do. And you might need an adaptive device if there's been a lot of damage. Right. Well, I would like to thank you for joining me on this edition of Abledon On Air. Thanks for the questions. We would like to thank our chief sponsor, Green Mountain Support Services as well as Washington County Mental Health and Champlain Community Services for sponsoring Abledon On Air. This puts an end to this edition of Abledon On Air. Arlene is off today, but thank you for joining me. I'm Lauren Seiler. See you next time. Abledon On Air's major sponsorship was given by Green Mountain Support Services, empowering neighbors with disability to be home in the community. Also sponsorship was given by Washington County Mental Health Services where hope and support come together and Champlain Community Services of Vermont.