You Are Not Alone: Education on Low Vision and Vision Loss for Mental Health Professionals

[00:00:00] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Vision loss tends to lead to limited participation in everyday activities, leading to social isolation. So reduced personal satisfaction and overall decreased quality of life. So of course this makes sense because if you're not doing things the way and as well as you could do them before, of course you're not going to be very confident about yourself. And trying to figure out these strategies is overwhelming at times. [00:00:24] And so majority of our patients are depressed, they are anxious. [00:00:28] Introduction --- [00:00:28] Meghan Beier, PhD: My name is Meghan Beier. And I would like to welcome you to the Find Empathy Behavioral Medicine Webinars Series. The talk that we have for you today is titled: "You Are Not Alone: education on low vision and vision loss for mental health professionals," led by Kristin Shifflett. Kristen Shifflett is an occupational therapist from Johns Hopkins who specializes in low vision. Kristen started working at Johns Hopkins Bayview inpatient rehab in 2006. Johns Hopkins Bayview is a certified stroke rehab center. So Kristin started focusing on vision rehab with neuro patients. In 2012, Ms. Shifflett completed a low vision certificate program from the University of Alabama Birmingham. In 2013, Kristen transferred to the Wilmer Lions, low Vision Rehab and Research Center to focus on providing vision rehabilitation to patients full-time. In 2015, Ms. Shifflett achieved her certification in low vision from at the Academy for Certification of Vision Rehabilitation and educational Professionals (ACVREP). And in 2018, she achieved her specialty certification in low vision from American Occupational Therapy Association (AOTA). Over the past 10 years, Ms. Shifflett has focused on educating the community about low vision by presenting at local and national conferences. And participating in education at the local lion's club. She's also mentored therapists and occupational therapy students who are interested in low vision practice and started a peer support group called See Us Network (SUN) with patients from the low vision clinic that she works at. [00:02:12] For research Ms. Shifflett is focused on improving the overall rehab process for patients with vision impairment as a secondary condition. Her current study is focused on educating and training physical therapists at the outpatient therapy level about visual strategies to apply for functional mobility activities. [00:02:32] Thank you to the Rowan Center for Behavioral Medicine for hosting the live webinars. If you would like to stay informed about future free webinar topics, sign up for our monthly newsletter at findempathy.com/learn. The recorded audio and video content is eligible for continuing education, but please be aware that we do not offer a CEs for the live presentations. To earn continuing education for the recorded presentations professionals are required to listen or watch the complete recorded talk via the find empathy learning platform. For more information, please click the link in the show notes or visit FindEmpathy.com. [00:03:16] I really hope you enjoy this talk by Kristin Shifflett. [00:03:21] Presentation --- [00:03:21] Kristen L. Shifflett, OTR/L, CLVT, SCLV: All right. Good afternoon or good evening, everybody, wherever you are. Um, like Meghan said, my name is Kristen Shifflett. Um, I'm very excited to talk to you about low vision patients. Um, it is a big passion of mine for many years, like Meghan said. Um, and so let's get started. So no financial disclosures for this. [00:03:41] Um, this is just a picture of my cute, cute family, um, as well as my bio information that Meghan just talked about. Um, so basically what I want to talk to you a little bit about today is, um, to learn about low vision services, like what it is and what we do, um, to identify some common stressors for patients with vision impairment or blindness, um, discuss. [00:04:03] Some limitations of reaching psychological support for patients with low vision. And then if anyone, we can talk a little bit at the end, talk about brainstorming ideas on how to provide some more support for people with low vision or vision or blindness. So just the basics of vision statistics. Um, right now in the US we have 4.2 million Americans age 40 and over that are visually impaired. So this means low vision and legal blindness. So low vision, according to the American Ophthalmology Association is 20/40 or worse in the better seeing eye. Um, they also could have some central vision loss or some peripheral vision loss as well. [00:04:46] Um, and this number is getting higher and higher as we've always said for probably what the past 10 years about baby boomers. Well, there's even more people with vision impairment and I will say people are getting younger. Um, the average patient, I believe at the low vision clinic, they did a study many years ago said it was around 77 was the average age. I believe now, the patients seeing me, that's significantly lower. I want to say it's probably in the low 60s now. Um, 60 would probably be the average age of the patients I'm seeing in the low vision clinic. Um, and then also some, just another interesting fact is not also just age related diseases, but also people are having actually eye injuries at work. And apparently there's 2.4 million of those that happen, um, in the United States. 35 percent are 18 to 45 years old, um, and then at least 20 percent or 10 to 20 percent can be temporary or have permanent vision loss because of an injury. And that does happen a lot, I would say. So the causes for vision impairment, again, age related diseases, macular degeneration, glaucoma, um, you can have acquired brain injury, whether a stroke or brain tumor, um, people can be born with vision impairment. [00:06:01] You can have a genetic condition like retinitis pigmentosa or albinism. Um, and then also like we were talking about, um, earlier in the last slide was some sort of injury, whether it's a work injury, I had a, um, a worker that was putting up a door. And it was a lack of communication between the two during incident and he lost his whole left eye. [00:06:23] Um, and then also something as civil as children playing. Um, you know, a child can get a rock thrown in their eye and they can lose their eye that way as well. Um, so injuries and also happen besides, um, age related diseases. So I work at the Wilmer Eye Institute. Um, we are a small yet mighty group of people. [00:06:44] Um, we, um, obviously work with a lot of people that are focusing on the prevention of blindness. They're working on trying to improve or restore vision. Um, but that's not our department. Our department is actually working with what your vision has. And so currently we have three ophthalmologists on staff and a fellow. [00:07:06] Um, we have two rehab therapists, one's myself, another one's, um, Jim Deremick, a technician, two front office workers, and then a researcher manager. We also do a lot of research at Hopkins with, um, vision impairment as well. So again, a small but mighty group, but we try to take care of many patients as we can every day. [00:07:25] So again, the goal of our rehab center is to maximize the patient's remaining vision to enhance their function and independence. So again, we're working with what they have. We don't do surgery. We don't have any medicine that will magically fix their vision. We really work with what we have. So some of that can include assistive technology, which we'll go on through, um, in other slides, different strategies, community, community resources. [00:07:52] So it depends again, what the patient's goals are, a very goal oriented clinic, um, to help figure out what our patients need, but again, so no surgery really working with what the patient has. So basically the patient will start seeing the, um, the ophthalmologist, I mean the optometrist, I'm sorry. They see them first, um, they will give a very detailed case history of what the patient does, where they live, are they driving, um, what devices they have, who are their support systems, are they working, are they retired. [00:08:25] Everything about their day from the moment they get up the moment they go to bed. We ask all those questions. Um, so then basically after that extensive history, we do a visual acuity test. So let's see how their vision is at a distance. Um, we can do a test it near. So the reading test, um, their, their visual field. [00:08:46] So basically how much side vision they have or don't have, and then the central vision as well. Um, contrast sensitivity, which I'll talk about the next slide, is probably one of the most important measures with vision loss. Um, it's something that changes as we get older, um, but we are the only clinic that measures contrast sensitivity. [00:09:06] And then, of course, everyone wants magical glasses, um, so we will do our best of our ability to give them a refraction, um, just to get a good base, um, level, and then use that refraction with other devices to help them function. So this is the big one, contrast sensitivity. So what is that? It's our ability to distinguish an object from its background. [00:09:29] So anything white on white. or dark on dark is very hard for anyone with impaired contrast sensitivity. So here are three different ways we can kind of measure contrast sensitivity. On the left there is a picture of, it's called the Peli Robson um, contrast sensitivity chart, has a series of letters, every three letters changes and fades. [00:09:50] So it starts with really black letters at the top left and then it fades all the way down to white. So really our patients Ideally, we want to, there are actually letters in this bottom row too, just FYI, uh, but yeah, so basically like the NOD, that's typically where, um, some of our patients lie and it's pretty, um, still pretty impaired, you know, which it's, Trying to see a white piece of paper on a white table, um, that may be hard to see. [00:10:19] Um, even if it's like food on their plate. Um, stairs, seeing the definition of stairs, that can be very tricky for a lot of our patients. And so, um, trying to have an accessible environment for them is really helpful. So thinking like designing of rooms or even, um, Like even like basically a hospital, you know, just even a hospital walking around trying to see definition where things are is very important for our patients as well as their home. [00:10:47] So they have other ways that we can measure contrast sensitivity. This is called hiding Heidi. So if patients have vision, also speech impairment, or sometimes our children, we would use the hiding Heidi, so they could see where the faces. So besides this extensive case history, we talked a lot about, you know, where are they're having functional complaints? [00:11:10] Where are they having troubles throughout their day with, um, everyday activities? So basically, this was a study done, um, and Dr. Goldstein and staff did this, um, I believe it was 2017, um, but basically is looking at Um, what are the functional complaints of our patients? So there's a bar graph here at the bottom. [00:11:30] The first one, number one, is reading. And reading doesn't have to be reading a book. Reading can be reading your cell phone, a computer, a food package, um, a piece of mail, medication, any type of reading throughout your day. And then, of course, number two is driving. And then it kind of continues different other things um, people have difficulty with, like faces and socialization, walking, um, technology, TV. [00:11:55] Um, so those are some complaints that some of our patients are having. So throughout these changes, and when you have an inability of doing things, of course there's an emotional component attached to it. So vision loss tends to lead to limited participation in everyday activities, leading to social isolation. [00:12:15] So reduced personal satisfaction and overall decreased quality of life. So of course this makes sense because if you're not doing things the way and as well as you could do them before, of course you're not going to be very confident about yourself. And trying to figure out these strategies is overwhelming at times. [00:12:33] And so majority of our patients are depressed, they are anxious. Um, And so basically one of the solutions they say is problem based treatment can prevent these, um, depressive disorders and loss of valued activities. So one of that way in the low vision clinic is occupational therapy. Um, so we. Um, basically what I do is have, create an individualized plan of, of care for our patients. [00:12:59] So we include their goals, what's important to them, like before it said, reading or driving or trying to see faces better. Um, so try to improve their efficacy with their ability to complete the task, try to fix those strategies and try to identify what would work for them to help them be successful. [00:13:17] Also want to be, make sure they're safe in their home, they have good quality of life. Um, so basically OT services are just with low vision or just like any other OT services out in the community. They're covered by insurance as far as, um, visits go. Um, and so also I have the availability at the outpatient clinic to do home evaluations. [00:13:37] Um, I used to do a lot more obviously before COVID, COVID kind of changed things around for everybody. Um, but I still do some, um, to help our patients. Um, I also go to work site evaluations and look in the areas that they are working. Um, one patient, um, well, I was told he worked at a warehouse and so the doctor referred them to me. [00:13:59] And so I, I was reading those chart. I'm like, okay. Works at a warehouse. This is what he does. Yeah. They didn't tell me it was the freezer part of the warehouse. So it was like negative, it was freezing cold temperatures and I'm coming in like Cute little shoes and my bag, um, not knowing it was a freezer. [00:14:16] Uh, so thank goodness, at least it was in the middle of winter. So I had a winter coat when I was working in his area and looking around. Um, but you know, try to go to federal state buildings if I can. I've been to schools, um, worked at, uh, with some teachers and their classrooms. And then another big component, um, is trying to educate family. [00:14:37] and caregivers, anyone in the community who is, who's a valuable social support for the patient, we want to make sure they understand what the patient is going through as well. So some of the solutions in low vision can be very simple and very complex. Something, a very common complaint sometimes is patients And saying, well, my shampoo and conditioner look really the same. [00:15:01] They're exactly the same. You know, they're same color bottle. Um, you know, how can I tell them a difference? So a simple solution is literally a rubber band. So you can put a rubber band around the shampoo and you say, okay, in my system, in my house, the shampoo has a rubber band, um, and the conditioner does not, so that's how I can tell them apart in the shower. [00:15:21] Um, another common thing is even look using the stove, the oven, microwave, all these flat surfaces where the push buttons and you can't tell which button is what, um, I was a kid of the 80s and, um, puffy paint is amazing. Puffy paint you can put on any type of surface except a TV remote these days, which is really annoying, um, because nothing sticks to those TV remotes. [00:15:45] Um, but. Puffy paint, you can put basically it's like raised glue. So once it's dry, it gives that texture that you need to discern what an object is. So if a patient was like. Okay, I can't tell the difference between bake and broil. You can put, um, sometimes I've done a letter. I did the letter B over bake, um, so they know, okay, B is bake, and then to the right of that is broil, or you can put a little dot. [00:16:09] You can do that as well, or these other orange dots here to the left of the puffy paint is, um, they're called bump dots, and they come in different shapes, different colors, and you can put them over certain buttons as well. The thing is with this, you don't want to cover everything, but you do want to do a couple of main buttons that the patient's like, I just can't remember where this button is. [00:16:29] And is or this is a new microwave. I'm getting confused. So we can simplify that for them. Um, the other thing because of contrast sensitivity, a lot of our patients, just even a simple light is helpful, um, with the right pair of glasses. Sometimes lighting is what they need in order to do what they need to do at home. [00:16:45] Um, and then another basic one is even putting toothpaste on a toothbrush. If you have a white bristle toothbrush and white toothpaste, that white on makes it very hard to see the differentiation. Um, so changing That bristle of the toothbrush or changing the toothpaste can make it so easy for patients and allow them to be so independent. [00:17:03] Then we can get some higher tech things. This is where the skill comes into play. So apparently there's, I counted one day for an education course I did and there's about 32 ways to read a newspaper or piece of paper. Um, and that is from a pair of glasses to an actual physical person reading to you. So there's so many different options. [00:17:26] Um, and so the lady on the left here, um, is using, it's called a closed circuit TV. Um, and these were started many years ago and, um, are still a number one or one of the main resources for our patients. But basically there's a camera up top and it connects to a screen. So anything that camera is looking at. [00:17:47] is shown up on this screen. You can make it bigger. You can make it smaller. You can change the color to give it more contrast and make it easier for patients to see. So this lady here is an artist. So she had the head of this device called the DaVinci on her painting. So she can kind of see that detail work that she needs to do. [00:18:07] So that's one big option. It's called the desktop CTV. On the middle, on the bottom, On the bottom where it's on a, it's called a Ruby. It's a portable version of the bigger monitor. And that's, you can put that over food packages. You can put that over anything you want to be able to read. Um, and so again, that does the, basically the same thing as the desktop changes, color magnification, um, but it's just a smaller unit. [00:18:31] The typical things you see are probably, um, in the middle to the top, which is a stand magnifier, um, it's helpful for anyone that has arthritis because you don't have to hold it. You literally put it flat on the table. It would magnify and give it light. So someone that doesn't need a lot of magnification, um, this is a really A device for them. [00:18:51] But typically what you probably see is to the bottom right, and you have those different levels of magnifiers. So magnifiers are definitely helpful, especially for depending on what the object is. Um, but then they, the, they have different levels of magnification, so the bigger the magnifier, the weaker the magnification is. [00:19:10] So that's something to remember. Um, and then the stronger the magnifier, the, um, the smaller the area is. Meghan, you have a question. [00:19:19] Yeah, this is great. Um, these kinds of solutions, especially the high tech ones, are they covered by insurance? Or do people have to pay this out of pocket? [00:19:30] You're so yeah, you're beating me a little bit. But yes, that is, we can answer it Here. So unfortunately, no, this is not covered by insurance. None of these solutions that I provide are covered by insurance. Insurance only pays for glasses. Um, if they have, again, vision insurance and you get glasses every couple of years, um, but Medicare will pay for glasses after cataract surgery and that's it. [00:19:53] So none of these things are covered, which is a huge problem in the world. Yes. [00:19:59] Um, I was wondering if you could tell me what. That the larger, um, uh, machine that the woman is using with the painting is called. That's amazing. [00:20:08] Yeah. So that is a desktop CCTV closed circuit TV. Um, there's many different brands out there. Um, they, there's, it was one that the camera is above where that lady is using now. And then the one to the right of that, um, the monitor looks like basically a computer monitor and then that stays still and you put the paper underneath it. And it moves from side to side [00:20:33] So amazing it I can imagine the millions of things that would allow patients to do. Thank you. [00:20:39] Yeah. I mean, patients use this for anything. I mean, I've had patients, you know, the basic thing is everyone wants to read their mail. Because they want to be able to have that financial going over their financial documents. They don't want everyone to know their business. They want that privacy. [00:20:53] So that's probably one of the number one things people read. The second probably honestly is the Bible. And then beyond that, I've had coin collectors. I've had fishermen that need to scale a fish and they want to make sure they got all the scales Jewelry Medication, food packages, writing, writing is a big deal. [00:21:13] I have a gentleman that wants to write his own obituary and he wants to write it himself. So that's what he's working on right now and using something like this to do that. [00:21:21] So, yeah, thanks again. Oh, yeah. [00:21:24] Another question. I'm sorry. [00:21:27] Hi, Kristen. I was wondering if there's any organizations that might provide grants or like national. [00:21:34] Like the blind. Absolutely. Yeah. So let me go. Oh, yeah. So let me go to this next. I think it's the next slide. Hold on. Maybe the next slide after that. But I will answer that question. I promise. Um, so basically the other one more thing I just want to explain. So basically this closed circuit TV that we have here as one device, it's now becoming, or they're trying to make it sleek and sexy, like this gentleman where this head mounted device. So basically, um, people are just want that contrast that they can't get in glasses. Um, they want that in a head mounted device. So there's this big in the past, probably 10 years since I've been at Wilmer. This has been the biggest thing that all the, um, vendors are working on is trying to find this option to have this in a pair of glasses. [00:22:19] So this gentleman is using a VR gaming headset, and then the cell phone is attached into the headset. So it's actually using a regular Android cell phone with a specialized app, and it's basically acting like a VR headset. The desktop CCTV. So it's pretty cool. Um, just FYI, if you ever want to know any more about these um, devices and things, there's a YouTube channel. [00:22:42] It's called The Blind Life. Um, this guy name is Sam. He has, um, he is visually impaired. He reviews every single piece of device ever known to man, um, and has done an excellent job. Um, he also is starting a podcast too, um, but he is amazing. And just to give some input for patients, I always send them there. [00:23:01] Because of the okay, we have high tech, low tech, again, cost is a big deal, which we'll talk about more in the next slide. But also just know, you know, even our phones are now becoming very accessible. Um, you know, there are some apps on our phone, we can make things bigger, we make things smaller, I'm gonna change the color of things. [00:23:20] But this is an app that's actually free on our phones. So the One in the first two here that says zoom and color filters. This is an Android phone. This is using an app called WeZoom. And then the far right here, I have a demonstration of the magnifier using the magnifying app within Apple. So this does the exact same thing, um, that the Android version does. [00:23:46] So it can zoom in. Um, and then you can also change the color of it as well to, again, that contrast piece that we're looking for. So a lot of our patients can use this, that they can't afford some of these other devices, um, or multiple devices. They can have this as a backup that's on their phone as well. [00:24:05] So these are, um, just little snippets of the two apps. If you guys want to look at the QR codes, that will take a picture of them. They can, um, take you to the link so you can see what those apps look like. So basically, Um, so while these devices that we were talking about, yes, insurance does not cover them. [00:24:31] Um, but the, we do collaborate with a lot of other services in the state of Maryland where we're at. And then each state actually has their own state rehab services. So basically division of rehab services or DORS, that's who we work with in the state of Maryland. But again, each state has their own blind services. [00:24:49] I mean their own rehab services. If you ever have questions, let me know. I can help direct you. Um, but basically this state agency, they help people, um, no matter what their age is. So 55 and younger, they help them to return to work. That is their main goal, um, which is a limiting factor for some of our patients, um, because some of them have a lot of chronic illnesses. [00:25:09] If they're 44 years old, um, I have someone recovering from Um, chronic COVID that there's just no way she can do it, unfortunately, with her vision and the deficit she has from COVID. Um, so right now, that's not an applicable goal for her to go back to work full time. Um, so we have to figure out other services for her, but for people that can, that is one great service. [00:25:32] Um, they do have an older, 55 and older community, um, that that is for them to sustain, to be able to be, live at home. So independent living, older, blind. Is what it's called. And so they also can help with services and equipment, the blind industry that serves Maryland. Um, this is a, an extensive program for blindness. [00:25:52] So patients can live there for six months or nine months and take classes on community mobility, cooking, um, working the computer, any assistive technology, any goals they have, um, so they would, they can work there. They have different levels of programs, um, as well in that. Um, we also communicate with the certified driving rehab instructors, so our patients that actually can drive. [00:26:15] Maryland, we have the, um, modified driving program. Each state is different with their driving criteria. Um, but basically with our patients, um, they can work with these instructors and how to be a safe driver. Um, obviously we do, um, driving is very serious for us. We talk a lot about with patients, usually patients in some capacity will restrict their own driving in general, like. [00:26:38] stop driving at night. But we do have a few patients that, you know, come in that are 2200, which is legal blindness, and they drove there. So you're like, Ooh, how did that happen? Um, so we have to educate and our patients about that about driving succession as well when it's appropriate. And then the big one, which is the very hard for a lot of our patients is the orientation mobility training, which is the white cane training. [00:27:05] That is a very hard pill to swallow for our patients when they need those devices for safety and make sure they're not going to fall. And also then they can be independent and navigate on their own. So working a lot with orientation mobility specialists. And again, those services are not covered by insurances either. [00:27:24] So again, we would work with doors. Um, to help provide assistance for them, um, to get that treatment covered for them, but also, um, like someone's alluding to, we do have grants. We do work with the community Hopkins. Um, you know, we do have grants for, you know, Funding research and things like that. But we also have patients that we ask if they give, they would give to patients to get devices. [00:27:50] And so we do have something, the visual assistive fund. I had a grateful patient. Unfortunately, she's no longer with us, but she donated a lot of money to give back to patients to make sure they can use their devices and get what they need. Um, and then even in the community, there is a young girl that started a program, um, to help, um, school. [00:28:10] Um, Excuse me, help students get what they need because the school system, they will provide them what they need at school, but they don't have anything at home. Um, and so also that is, um, that was one of her goals and she started another, uh, foundation for that. And then also, um, anyone that has a donated device, we definitely recycle as much as we can. [00:28:31] I just had one, another one donated today to the clinic, which we have a list of people that need devices and so we will, um, give that to another patient. So because of all of this, because, um, this is such a, it's just not, it's not a one stop shop low vision. We come, we evaluate you, but there's a lot of team members that. [00:28:52] are needed to help someone function. And it's kind of, that's probably one of the most frustrating parts for our patients, um, because they're like, I'm at Wilmer, why can't I get everything here? Um, we wish we had everything. We wish we had a social worker, an O& M specialist that worked directly with low vision patients. [00:29:08] We have one in the hospital, but you know, as everyone else's, we're all overworked and there's not enough of us. And there's a lot more patients. Um, so we're trying to do the best we can with what we have, but it is an extensive rehab process for all of our patients, um, because like I said, there's 32 devices. [00:29:25] I need to help that patient figure out what's the best one for them to do what their goal is at hand. And then we talked about this a lot already, but most of our, um, equipment is not covered by insurance, hence why we use those other agencies or grants, anything we can to help our patients, but even within the state themselves, um, they are getting reduced budgets for what they need to do. [00:29:48] Um, and then also with our services, um, a lot of insurance, some of our, you know, Again, the hospital insurance issue, um, some don't work par with Hopkins or Hopkins doesn't work par with other people, um, certain providers, they have limited providers that our patients can go to. For example, like Kaiser, they were, they don't want to, they have their limited network of people. [00:30:13] So sometimes that's tricky for our patients, um, to try to get in. We do work on single case agreements and trying to get everyone in as best we can, but it's still a hefty process for the patient and for the providers. Um, and then also with transportation, all of our patients drive, um, and so that makes it very hard for them to come into the amount of visits they necessarily need to get, to get there, to meet their goals and get the services they need. [00:30:37] Um, the other thing is that a lot of our, there is a shortage really of providers. that provide low vision. So there's, you know, a lot of occupational therapists in the, in the country, but there's probably less than 500 that do low vision full time. Um, we in the state of Maryland, we have three and that's a lot. [00:30:59] Um, there are some states there's only one person um, that does it full time. But we are slowly trying to integrate more occupational therapists to do this service as well. Um, with the state agencies, there are certified low vision therapists as well. Um, but again, not all, they don't see all patients. They typically see patients who are legal blindness or worse, um, because they have a higher priority with the state. [00:31:21] Um, with occupational therapy, we can see people, you know, that are the 2070 or 2080, um, that are still have some vision impairment, but they're not. Totally legally blind yet. Um, so then also like there's low low number of orientation and mobility specialist. Um, and anyone that's trying to provide low vision service right now, unfortunately. [00:31:44] And then basically as patients go through this process, you know, it's not like we go through it and that's it for the rest of your life. Unfortunately, a lot of these patients have progressive diseases, so they may go through this cycle of rehab. Multiple times throughout their lifetime, um, which can be frustrating as they're like, my vision's getting worse, you know, um, every time they come in to see us, we come up with good solutions and then they're good for a while. [00:32:09] And then maybe we'll see them, you know, we try to do annual visits, but if they miss a visit with us and we see them two years later, they're like, Oh, my vision's worse again. Um, so then we have to reinvent the wheel and try new devices or use our current devices in a different way. Yeah. Meghan. [00:32:25] My question is, uh, about mental health providers and, uh, specialization with mental health. Um, the organizations that you mentioned, uh, do they also certify mental health providers? Um, if anyone on this call was interested in kind of having more of a specialty, you know, um, how would they go about doing that if you're aware. [00:32:47] Okay. So if, so I go into that a little bit more with my slides, I've kind of just a little bit more background, but I'm going to tell you what we've done so far and kind of where I think things are going to go. Um, but if that doesn't explain, then let me know. [00:33:02] Okay, great. Thanks. [00:33:04] So again, I was, you guys are all familiar with stages of grief. [00:33:07] So basically a lot of our patients, we are telling them that basically go to grief counselors if they cannot find someone in their area. I mean, Someone to specialize in low vision, we typically go to grief counseling because they're going through all of these phases as they're going through the rehab process. [00:33:23] And again, they can start with denial of vision changes and they can come see me two years later. Um, you know, they're still angry because nothing has cured their vision, but then typically a patient that would follow up with services, I would say to go from grief to acceptance, um, that they have a vision impairment in general, I would say it's like one to two years for average for our patients. Ideally, as a provider, I want that a lot less. Um, just because, you know, we want to help people and not saying they should snap out of it. That's not it. It's just somehow wish we can address our needs sooner. So basically, our patients are telling us they have this loss of formal self. [00:33:59] They don't, I don't know if I'm going to be me ever again. Um, kind of creating this new normal is what they're doing, but they're struggling with creating that new normal. You know, can I be independent in my home? You know, how am I going to get from one place to another? I can't drive anymore. Um, mobility, you know, I just don't want to be a target using that white cane. [00:34:17] It makes me uncomfortable where I live, you know, social situations. I just don't want to be different than everyone else because I'm doing things differently. Um, I can't identify the person next to me. So what do I do? Um, and then even with that work environment, you know, I'm I'm slow. It's because of my eyes, not because of my mind. [00:34:34] So this is like all of these struggles that they're going through every day. [00:34:39] And the other big thing is that because of this vision impairment, they do not have. It's not, it's tattooed on their forehead. It's not something visible. You really, if I go in the waiting room, it's not like I know, Oh, that person has macular degeneration. [00:34:52] That person has glaucoma. I have no idea. I don't know if they're the patient or if they're the family member. So it's really hard for patients to get the support they need because of they bump into somebody, um, you know, at the grocery store. They, you know, it takes a hit to their day, you know, they, it takes so much for our patients to get out of the house and to use those strategies out of the house. [00:35:13] One incident. With a friend, a neighbor, a co worker, anybody can just knock them down a couple pegs. So this is just kind of this cycle that our patients unfortunately go through every day. So right now the support we have for them, we have Division of Rehab Services, they do have a support group. Um, there are some support groups in the area, um, in our area. [00:35:35] They have, um, the Meyerberg, um, they have an online support group. Um, a lot of people have, some people have been going to the Facebook community. Um, there's like a Leber's group online. There's some caregivers. Support groups. Um, we used to have a social worker worth us that we would refer to patients. [00:35:50] She didn't work directly with the hospital, but she did her own smaller business. And so they specialized in vision impairment. That was wonderful. But she recently retired, um, which is what's happening to a lot of our providers. Um, they're retiring and no one's filling in their shoes. Um, we do recommend psychological services, like I said, grief counselors, have patients talk to their PCPs the best we can, but then also, um, the caregiver education or whatever I can do in the support in my OT session, I will. [00:36:17] So our, our patients beyond that, you know, they go to some of these support groups, they're great. But sometimes they're like, oh, people complain too much. You know, they're full of old people. I want someone my own age. Um, I want to be able to find, I want to find people that are like me that want to go back to work. [00:36:34] They don't want to take that disability check. I want to work. [00:36:37] Um, so in 2017, I worked on the, um, created a focus group with about 20 of my patients. I did not run the group because they're my patients. I had someone else lead it, but I wrote the, um, The questions for the group. So basically we're trying to find out if people would, what they were looking at as far as their goals, if they want to find a mentor, someone's, if we couldn't find the support, how could they find it with another person? [00:37:06] Is that the best way for them to go? So basically they, um, the summary of the group was saying, yeah, I want to meet more people with low vision because a lot of the patients said they felt like they were the only one that had a vision impairment, but had to remind them as like, I do this all day. So I see patients all day. [00:37:21] So, you know, not saying you're not special, but, you know, there are more people that. have a vision impairment than you think. Um, and so we tried to decide how to do this peer mentor mentee relationship. Um, you know, people are interested in doing it by goals than versus diagnosis. Um, and then despite people having trouble with transportation and things like that, I thought an online support group would be a great idea. [00:37:44] Um, again, this is 2017 before COVID. So, you know, We were like, okay, maybe they'll use technology to help them. Um, but they were like, no, no. I want to meet people in person because I want to be able to see them. I want everybody to hear the voice, really connect to them. I can't do that when I'm online. So we ended up creating, this is my little group. [00:38:02] Um, this is our group in 27 or 2018. Um, we did a, um, mixer. We all came together. Um, and I matched them up based upon what their goals were at the table. And so they met more people. We kept the group going for a while. We actually created an online group, um, because, you know, it was another way for them to connect with each other. [00:38:26] They were like, okay, I can do that. This is how we'll do it. So I created a Facebook page. I was the, um, moderator of the group. And then it was just another way to people connect between meetings. Um, so now we have. Again, COVID changed everything. Um, that now people are able to use zoom. And so we have transitioned to zoom. [00:38:47] Um, and then, um, because initially people are like, I can't use that. I can't figure out the technology is too complicated. Well, you know, COVID forced everyone to do that. And so now we are doing zoom. Um, now instead of being just the Wilmer group, we have it nationwide offered to all whoever wants to, um, be involved in the group. [00:39:07] Um, and then I actually have other therapists joining in me that I'm mentoring. They're helping with the group as well. And since we've recorded the session, like we're doing today, patients can look at it their own time. So if they can't be there real time, at least they're still getting some support. And then also, um, we've been of these support group members, we've been doing one on one, um, matching. [00:39:29] So a patient doesn't want to go to a group is nervous about it. We can have someone call and check in on them. Um, but the biggest thing is this is again, some support, but it's not the medical support that some of our patients need. They come to me and they're just like, you know, you know, miss Sally is really depressed person. [00:39:46] I think she needs more help. Um, more, I'm learning more about her and I think she needs more help. So this is like where we have to figure out how to do this. We need more providers that feel comfortable talking about. Vision impairment. Um, we, because that's the biggest thing. They're like, I want someone that feels comfortable talking about it. [00:40:05] The patients, they're like, not, you know, vision is very, it's not just vision as a sighted and blind. There's this huge spectrum in the middle. Um, society doesn't really understand it in my perspective. Um, yes, I don't have a vision impairment myself, but my patients tell me that. I truly understand what they're going through because I listen to them and help other people that I can understand what they're going through. [00:40:29] Um, but somehow we have to get more providers that can do this. And also they can help with not only the counseling, but medication management. And then also people that would take Medicare. I'm finding some providers, but no one's taking Medicare. And typically for our patients, if they're going on disability, after about two years, if they don't have, they're not off disability, they're going on Medicare. [00:40:52] So trying to find someone again to have more of those services. The other thing that I personally am trying to do is a couple of things, um, you know, in my spare time, um, is to have some more wellness groups. So instead of being one on one with my clients, maybe we'll have a group of five or six and we can go over goals and things like that. [00:41:11] I used to run that, um, when I was in OT school with a Parkinson's group. Um, it was, you know, a project that one of my, um, Mentors did. I would love to continue doing that. Um, so that's one option. And then also just having a podcast of patients telling their stories because that's really what patients just don't want to be alone. [00:41:31] They just don't, they feel like I'm the only one that has this problem. Um, but when they hear about other people going through things or what other people did to kind of overcome things, they're like, okay, maybe I can try it. Um, I kind of tell my patients, it's like me telling you to do something. It's like me having my mom tell me to do something, you know, it's, it's not the same thing. [00:41:50] But when your best friend says, Hey, I understand why that white cane is really kind of daunting to use. But when I do use it, it's really helpful for X, Y, and Z people typically have a little bit more receptive, at least to try using the white cane with a specialist. So again, just trying to make those connections a little bit more for our patients. [00:42:14] And so basically that's what I wanted to kind of also talk about answer any questions about just vision in general, but then also, you know, hearing what we have done so far in the clinic, and then what I'm hoping the future where you guys feel like maybe you could fit in. With this big, um, problem, I guess I would say in our vision community. [00:42:36] Kristen. Thank you so much. This was really helpful. And I loved hearing. Also, the perspective of many of the patients that you've been working with. Um, so. I wrote down a couple of questions through as you were talking, but I want to open it up to others before I jump in. So, um, does anyone have any questions, comments, anything that you'd like to share with the group? [00:42:59] Q&A --- [00:42:59] Attendee: I have some general vision questions, and then we can go to Meghan's questions, which may be a little bit of mine. Um, but in terms of, so I have a couple of patients, um, what I tend to see more often is like, diminished field of vision, um, or halos during kind of that, that dusk and dawn type of thing. And I wonder if there are any resources or. [00:43:32] Any suggestions that you can provide, um, to kind of help manage [00:43:39] Kristen L. Shifflett, OTR/L, CLVT, SCLV: the hey, the dusk and dawn. Is that like from a cataracts? Is that what's happening? Or do you know the etiology of it? So, so [00:43:50] Attendee: that's that happens for a couple of patients. So, 1 is cataracts. The other is, um, glaucoma and so, like, um, kind of progressing towards glaucoma. [00:44:02] Um, so it's a younger the younger patient in their 30s. And there don't seem to be any surgical options at this point. [00:44:14] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Yeah. So this is, this is actually a perfect person to go see a low vision specialist. [00:44:18] Um, because again, all of these, so that's basically when, I mean, I can see patients when they're actually getting some sort of surgery. We prefer it that way, you know, um, because it can help them understand that, you know, surgery doesn't fix everything. There's complication from surgery too. Um, but with your particular patient with glaucoma, yes, it is a progressive disease, but if they're that young, I'm wondering if they were born with it, which is possible too. [00:44:45] Um, and so basically that, yeah, they would, any of these devices that I showed you, depending on What their goals are. If it's, you know, safety with walking around in the community or just make sure they bump their head on every single cabinet or table or whatever. Yeah. I mean, this is the perfect person to reach out to low vision services. [00:45:04] And we can again, take it one goal at a time on what they need. Um, and yet again, it's very individualized. I mean, we're very much about goals. I mean, like you need to tell us, we helped create some too, but you know, trying to at least get a couple from them to get their buy in to be like, hi, this is a new way of thinking is a new way of approaching life. [00:45:26] And you have to create a habit, which we all know doesn't happen overnight, takes a long time and practice, but it's something that can be done. And when it is done, it's magical to see it's, it's amazing to see the difference in patients. [00:45:41] Attendee: Absolutely. I've, I've also found, so I have a, a couple of patients who would benefit from, from receiving services like this around vision. [00:45:51] A lot of it, um, a few of the patients that I'm thinking of that aren't the 2 examples that I provided. Um, or in that denial stage of, of, um, movement towards acceptance or denial stage of what is essentially, um, ambiguous loss. Um, and so watching them and hearing about how they try to navigate their environment, getting bumps and bumps and bruises, um, falling out of a patient and a patient who is diagnosed with multiple sclerosis. [00:46:23] And, um, what tends to happen is they tend to default everything that comes up to that to that primary diagnosis, um, without seeking out other alternatives or or other potential explanation for for what's going on. And so, um, I see that patient benefiting from from these types of services to and to your question. [00:46:48] I feel as if a lot of what you were bringing up in terms of um, what it is that you identified the patients may need more of in partnering with mental health and, and psychology is our, um, skills around, or movement towards acceptance. Right? And so skills around, um, adjustment. Mm-Hmm. , which is a lot of what, a lot of what. A lot of us already do. [00:47:14] Kristen L. Shifflett, OTR/L, CLVT, SCLV: No, I mean. All valid points and absolutely correct. I mean, that's what we're trying to, again, make that change. And it's really hard when, again, everyone knows about surgery and medicines and then not everyone knows about the other side of it where you gotta live for it, you know, how to get through. [00:47:35] I mean, even just making an appointment with you for someone who's visually impaired can be very challenging. They're like, well, let me like my schedule away. I can't read it. Or, you know, or may take them longer to do. They may get nervous. You know, there's a lot of things that go into it. But, um, it's just, yeah, we need to highlight more of the rehab part and doesn't matter the diagnosis. [00:47:55] I mean, we see people with MS as well. Um, and you know, typically they have some glare sensitivity or even double vision. Um, so sometimes just making a few modifications to their computer, their phone, um, Just makes life so much easier for them. We're really a lot about task analysis, which is why we go to the goal part because if someone says, you know, um, I'm having trouble cooking and then we're like, we really break it down. [00:48:22] Like, where is the root of the problem? Um, and try to figure out, Oh, it's because of this. And so we'll try to help them that way. [00:48:30] Attendee: I also last comment. Um, this, this presentation, I really appreciate it because it kind of helped me sell the idea of, or the potential or the opportunity in OT. Sometimes I get stuck in in how to present it to some patients feel like, oh, I don't need another therapy and and it's trying to explain that it's that it's different and it's problem solving focused in it. [00:48:56] Right? [00:48:56] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Um. Yeah. And it's definitely for them. I mean, you're not the only one having trouble with that. I mean, our, even our ophthalmologists, they're like, I don't have time to answer, you know, you know, explain your service. So they hear low vision. So then they get nervous about that. That's why we kind of changed it to vision rehab so they can understand it's really that rehab part of it. So, [00:49:18] Attendee: Mm-Hmm. Absolutely. The avoidance comes in that fear of progression. [00:49:21] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Mm-Hmm. . Got it. Yes. Mm-Hmm? ? Yes. Very much so. Okay. Well, thank you. Oh yeah, absolutely. Great questions. [00:49:29] Attendee: Kristen, first of all, thank you so much for this fascinating and enlightening presentation. Um, it really was interesting. Um, I love an experience where I see a whole different side to something and, um, and how helpful that can be for clients who, um, suffer with this, this varying level of dis ability. [00:49:54] My question is, um, if we were to want to connect patients with services, would we start with the Department of Rehab in California? [00:50:05] Kristen L. Shifflett, OTR/L, CLVT, SCLV: So that was probably what I would do because they can, patients can self refer, um, but then also it just makes it a little bit stronger as far as communication, because again, it's a state agency, um, you know, just having another If you can find like a doctor that works with the state agency as well. [00:50:23] But if you and I can, or you can email me and we can figure out if there's someone that is an OT or an OD nearby that works with the state agency as well. But I would definitely say at least start there, like just, they can refer themselves, um, to that agency. [00:50:38] Attendee: Excellent. I think you've heard very much. [00:50:41] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Yeah, I would start there. And then also if patients also need assistance, um, the Lions clubs are. Everywhere. Um, so if there's a local Lions Club with you, um, they raise money to help, um, to help with that. And that's, they can, uh, sponsor a patient. Um, they did one of mine for an iPad. She was a jazz singer or sorry, is a jazz singer. [00:51:03] Um, and so she needed the music and an inverted fashion like this screen. And that was the best way for her to, to read the music. And though they helped her get an iPad so she could go back and do her jazz singing again. Which was amazing. [00:51:18] Attendee: That's wonderful. Thank you so much for today. [00:51:22] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Of course. Thanks for coming. [00:51:25] Attendee: Thank you too. Uh, Kristen, this is really practical information along that lines. How, um, if you have a young patient who has low vision, like in their twenties or thirties, how long does it take for someone to, uh, learn braille? And is that an option for some patients? [00:51:47] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Yeah, it is, actually. Um, and I will say, um, Again, the people that are teaching braille, um, is becoming less and less, um, patients may not feel they may need it as much. [00:52:00] Um, just because there's other ways of technology of heightened and kind of taken over. Um, like, you know, audio books, that's now it's a quote unquote normal thing now. Um, and, but I will say I still have patients still do braille because you need to know the women and men's bathroom ATMs. Um, the elevators. [00:52:23] So having some of that basic component, um, their ability to learn that, you know, I don't know of what exactly that timeframe is, but just for like anything else, it depends on the patient. It depends on their motivation. Um, obviously cognition goes into that, their sense of touch that needs to be really good. [00:52:41] So patients that are diabetic, trying to learn Braille is tricky, right? There is a great resource Hadley for the blind. Um, it's another place that I send, um, patients. They actually do have an online course of how to learn braille. Um, they will go over it with you. They'll send, um, you can do it online or you can, they can do it, um, they can send you a kit. [00:53:02] And that is a free service. Um, I always encourage patients to at least know the basic braille, um, because of that reason. And you want to be as independent as possible. So, you know, these ATMs are not getting more accessible. Um, Same thing with telephones and elevators and things like that. So having that basic is helpful. [00:53:21] Um, there's even more people on Instagram, um, that are now having, you know, more awareness of vision. Molly Burke is the one, someone that I follow. Um, I can't remember this other. Husband duo. They're, they're really cute. And I can't remember his name at the moment that I had, but there's anyone on social media that may also help these kids to the young, especially the twenties and thirties to know that this is okay. Um, a different way of doing it. [00:53:48] Attendee: There's also a California based resource. I don't know if you know, learning Allie. I've heard of it, but I can't [00:53:57] Palo Alto. And it was really, um, It was called sort of like something audio for the blind, but it's for dyslexics and low vision and blind. And so it's more than audio books. [00:54:09] It's also, um, uh, text books. Yeah, which is really good for, um, again, younger people who might need that. Yeah, because we already have. Yeah, it's a large large also classic literature and people sign up to read the books. So it's also a volunteer type thing. [00:54:31] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Yeah, and I will say also each state agency depending on diagnoses, um, they like you can get depending on each state law like if you're legally blind, you can get some property tax relief, um, federal, state. [00:54:46] Um, federal tax relief as well. Um, you also can get 411 services, uh, for free. Um, I'm trying to work with some internet people to allow them to have internet for, not for free, but as far as an upgrade, like around here in Baltimore, Comcast is a big provider, but you need like the upgraded box in order to get the voice remote. [00:55:09] So I'm trying to say, well, if you're visually impaired, can you not have to pay the upgrade because. You're not really watching as much TV. You're listening. So can they work on that? So I've been working on that. Um, but then also free books for national, um, Federation for the, not Federation, the Library of Congress can give you talking books. [00:55:28] Um, also, and then also the Maryland has an accessible communication, which again is different between each state, but making sure you have an accessible phone. So it could be a home phone. So that could be for anyone that is cognitively impaired, visually impaired, hearing impaired, and anyone can sign that up. [00:55:44] So a psychologist can do that too, to reference, to get that sort of resource for the patient as well, which I've been highly encouraging people to use that service. [00:55:54] Attendee: I just sent the link to learning alley. [00:55:56] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Oh, perfect. Thank you. [00:55:58] [00:55:58] Meghan Beier, PhD: Kristen, thank you so much. Um, I, I had some other questions, but I want to respect everyone's time. I know we had only set aside an hour for this. Um, but I really, really appreciate you, uh, providing so many resources and some really practical information. So, um, thank you again. [00:56:16] Kristen L. Shifflett, OTR/L, CLVT, SCLV: Absolutely. [00:56:16] Meghan we can touch base by email if you answer further questions. [00:56:20] Meghan Beier, PhD: Wonderful. That's perfect. I [00:56:22] Narineh Hartoonian, PhD: I just wanted to say, thank you, Kristen, again, and thanks for everyone else for joining but thanks again and for great questions and a great talk. I hope we continue to collaborate and I hope this was helpful for all of you guys that are interested in health and rehab psych. So, thank you. [00:56:39] Conclusion --- [00:56:39] Meghan Beier, PhD: if you would like continuing education credits for listening to this episode, go to findempathy. com backslash learn. [00:56:51] Our goal is to help people living with challenging medical conditions find the mental health providers who understand their diagnosis. Our education and this podcast is focused on increasing the number of mental health providers who can help. [00:57:05] If you are a psychologist or a mental health provider that specializes in health populations, please consider signing up on the free Find Empathy directory. Go to find empathy.com and select get listed. We would love to connect with you on social media. Look for us on Facebook, LinkedIn, Twitter, and Instagram. [00:57:25] If you have suggestions for topics you would like covered by this podcast, let us know. Our email is info at findempathy. com. Finally, please know that the opinions expressed by the experts today are their own. We are not financially supported by any of the businesses or resources described in today's podcast. [00:57:44] Also, remember that the content provided today is for educational purposes only. Please seek the guidance of your doctor or mental health provider for any questions you might have regarding your own health or medical condition. Thank you so much for listening, and we look forward to you joining us in the next episode.