ICU – “I SEE YOU” PODCAST
Applying for Disability When You’re Too Dizzy To Work
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You never thought it would happen. You thought you would work until retirement or beyond, but then along came your vestibular disorder. Now, focusing on a computer screen is a challenge, you can’t drive, walking is a safety hazard, and your concentration is not what it used to be. Getting through a workday is exhausting and frustrating as you struggle to complete tasks that used to be easy for you. Many people who suffer from chronic vestibular disorders find it difficult to continue working. In this episode of the ICU – I See You podcast, we’re going to talk with someone who knows all too well the challenges of applying for disability, as well as a disability attorney who has helped many people successfully file a disability claim.
Additional resource about applying for disability with a vestibular disorder go to vestibular.org/article/coping-support/disability-resources/
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
ABOUT THE GUESTS
Tracey Pate is the founding member and Managing Attorney of Disability Associates LLC where 100% of her practice focuses on obtaining disability benefits for Social Security disability clients. She has over 30 years’ experience representing thousands of disabled individuals before the Social Security Administration, the Office of Hearings Operations, the Appeals’ Council and the U.S. District Court for the District of Maryland. She has been qualified as an expert witness in the field of Social Security disability law and is a sustaining member of the National Organization of Social Security Claimant’s Representatives (NOSSCR). She has a passion for people and the law and is energized when she is able to arrive at a solution that benefits all parties involved.
Camille Jackson suffered a traumatic brain injury in a freak household accident that altered her life forever. Camille was a lawyer and an accomplished expert in foreign policy. Prior to her accident, she worked in diplomacy for almost ten years, traveling to over twenty countries for meetings and projects with embassies. Camille has suffered with daily disabling dizziness for more than four years without answers or a diagnosis. When applying for disability Camille had to lean heavily on the advocacy skills she honed as an attorney. Today, we’re going to learn from her wisdom and experience.
Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/
Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media
TRANSCRIPT
VeDA uses otter.ai to create machine-generated transcripts. This transcript may contain errors.
Cynthia Ryan – VeDA
Welcome to the ICU Podcast where we explore the vestibular experience through conversations between patients and the health professionals who care for them.
Kimberly Warner – Unfixed Media
During this podcast, we invite patients to share their stories and healthcare professionals to ask questions, so they are equipped to better care for and truly see the invisible challenges faced by their patients.
I’m Kimberly Warner. And
Cynthia Ryan – VeDA
I’m Cynthia Ryan. And we are your hosts on this journey of discovery. All right, welcome, everyone to another episode of the ICU podcast. We’re excited today to talk about a topic that I think is really important to the vestibular community, so many people in the vestibular community, you never thought it would happen. You thought you’d work until retirement or beyond. But then along came your vestibular disorder. And now focusing on a computer screen is a challenge you can’t drive walking is a safety hazard. Concentration is not what it used to be. Just getting through a workday is exhausting and frustrating as you struggle to complete tasks that used to be easy for you. So many people who suffer from chronic Vestibular Disorders find it difficult to continue working. Today we’re going to talk with someone who knows all too well the challenges of applying for disability, as well as a disability attorney who has helped many people successfully file a disability claim. So I am really excited to start by introducing Tracy Pate, who is the founding member and managing attorney for disability Associates, LLC, which 100% of her practice focuses on obtaining disability benefits for Social Security Disability clients. She has over 30 years experience presenting representing 1000s of disabled individuals before the Social Security Administration, the Office of hearings operations, the Appeals Council and the US District Court for the District of Maryland. She has been qualified as an expert witness in the field of social security disability law and is a sustaining member of the National Organization of Social Security claimant representatives. She has a passion for people in the law, and is energized when she’s able to arrive at a solution that benefits all parties involved. Welcome, Tracy, thank you so much for being here.
Tracey Pate
Thank you so much. I’m so happy to be here.
Kimberly Warner – Unfixed Media
And I’m going to introduce our patient today. I’m really excited to introduce you to Camille Jackson, who suffered a traumatic brain injury in a freak household accident that altered her life forever. Camilla was a lawyer so we have two attorneys with us today, and an accomplished expert in foreign policy. Prior to her accident, she worked in diplomacy for almost 10 years. Traveling to over 20 countries for meetings and projects with embassies. Camille has suffered daily disabling dizziness for more than four years now without answers or diagnosis. When applying for disability, Camille had to learn heavily lean heavily on the advocacy skills she honed as an attorney. Today we’re going to learn more from her wisdom and experience. Welcome comete Camille, I’m so excited to have you
Camille Jackson
here so much. And I must say it was Vita which was which was the connecting dots for me to get the diagnoses that I got. So thank you Cynthia, for all the the advocacy work that for you and your organization.
Cynthia Ryan – VeDA
Thank you and you know what I also just want to call out to everybody out there who’s listening, Camille is as a fellow of the stimulator patient she’s having the similar issues today. And I’m sure all of you can relate to what that feels like and and especially when you’re when you when you have to do something interact with your computer or interact with other people. It’s really challenging. So I want to thank you for being here today. Camille and going through it.
Kimberly Warner – Unfixed Media
Yeah, absolutely. Coming out with you there. I’m a little bit better today yesterday was not so good. And it was more of one of those Well, I’m going to turn the computer off and just disappear from the work world. And when we work for ourselves, we can do that when we’re don’t and you had a very active career. I would imagine it was almost impossible. So let’s back up a little bit. Tell us a little bit about your vestibular journey.
Camille Jackson
Well actually I had it like you said I had a a freak house household accident, somewhat unremarkable. Um, essentially what happens I was in my my bathroom and prepping and propping and grooming myself to ready to go out I don’t remember where I was going. I think it was going to brunch or something like that. And I had my bathroom and I had a mirror ahead of me and mirror on the side. This mirror on the side was a medicine cabinet and the door was open while I was doing this and roaming and makeup and all that my dog came in and brush me on, brush the side of my leg, and I bent over to see what was going on. And you know, I know dogs need their attention. I love dogs, I, you know, I’m gonna go, Hey, what are you doing, and I just was bent over for a little bit. And when I came up, that open door slashed me across my scalp, and I sat there for a second is that oh my god. And I took the impact in my jaw. So I was like, Oh, that hurt on. And so I was continuing to do this. And all of a sudden blood was just kind of doing out and I kind of sat there was like what’s going on. And I called my my HMO to get instructions about what I should do, because I was not interested in going to sit in the ER for four hours before getting treated. So I said I’m gonna go to urgent care to see what they can do. I’ll go bloody so that I can get in front of the front of the line, I went there and I drove there. So I got their job. It was like, look, okay, it took me immediately back, a cleaned up, and they stapled me up in my head, like five or six staples going down this way. And they’d let me go. I didn’t think of anything of it. In hindsight, they didn’t offer me anything regarding percussion, I mean, percussion, excuse me, concussion protocol. So I just, I just assumed that was because I presented without any symptoms. I assumed that because I drove there, they assume that I didn’t have any concerns about that. So after the sort of the staples and the bandages and you know, getting washed up a little bit, I drove back home. So didn’t think anything of it just a little bit itchy here itchy there with the staples. And then I got the staples removed. And I’m proud of that three months after is when the symptom starts occurring. And the first symptom, I can remember this vividly, I was walking out of a Whole Foods after shopping, got in my car, and sat in my car ready to back out into the back out of my parking space to drive away and I turned my head to look, turn my head back this way. And this one, everything just started sort of that bobblehead effect and I felt like everything was going crazy. And so okay, what is this, okay, so I sat there took a deep breath. Maybe I’ve gotten, you know, my grant headache or whatever. So I finally got home. And as months pass, and as weeks pass Months pass, these symptoms were happening intermittently and been, they start to happen daily and in multiple times per day it to the point it took over my life. And I got to a point where I couldn’t drive, I couldn’t even sit up in the bed. Without getting sick, I could not I couldn’t walk my bed, my balance was off, I couldn’t do anything. I just could sit there I was just a vegetable. So and then just trying to figure out what’s going on. And here I am, four years later with the same symptoms, I’ve had some success and getting a diagnosis from some specialists. But it took a doggone effort to try to advocate for myself and go after the information that I need. Not every doctor knows everything about everything. So I’m in I’m dealing with my ailment and trying to do research my mom was my almost my sister, my secretary to help me get through the paperwork. And then on top of that, then my resources to pay for my visit to the specialist was dwindling. So I was like oh my god, I get what I’m going to do here and so that led me to a decision to have to file for disability
Cynthia Ryan – VeDA
Wow, that’s it’s it’s an interesting story. Not all I mean, not only that, that you know, a small what appears to be a small thing hitting your head can cause such a huge disability but the progression of your symptoms over time and and how they just and that’s not unusual with concussion. I understand. I don’t my my brother suffered a concussion about a year ago. And you know, at first he’s like, Oh, I’m fine. And then No, no, it wasn’t fine. And you know when he continues to struggle with that so I’m totally I totally get that. So like before I want to get more into your story. And Camille and especially about your decision to apply for disability but I want to just ask Tracy to Tell us a little bit about her professional. Tell us a little bit about your professional background and how you came to specialize in Social Security Disability cleaner.
Tracey Pate
So right out of law school, my first job, I worked for a small firm, the firm did a little bit of everything Social Security disability was one area of law, that this firm practice. And that was the area of law that really clicked for me. I found that I really enjoyed helping disabled individuals navigate this incredibly overwhelming, frustrating system, that it’s all it’s almost like learning a foreign language and 24 hours. I mean, you know, I just saw the struggle that people who have paid into the system, you know, their whole working career, and, you know, the challenges and the hurdles to just obtain benefits they deserve. So, ultimately, in 2005, I decided to open up my own firm, which I now still run called Disability associates. And all I do is handle social security disability cases. And yeah, it’s it’s been a great career. I can’t imagine doing anything else.
Kimberly Warner – Unfixed Media
I’m imagining I’m just this is occurring to me now and vestibular cases in particular, especially ones Camille, like you with traumatic brain injury have very delayed diagnosis, I’m empathizing with you, because I also had the an accident that didn’t trigger the symptoms, but preceded the symptoms. And so there was a long period of like, the intermittent episodes that eventually so anyway, trying to get disability when you don’t have a diagnosis.
Camille Jackson
That’s the issue, because I couldn’t, they asked you so do you have a condition that you expect will affect your ability to work? And does this condition have a probability of causing death or something of that sort? I’m crazy for private cleanup my, my language, but I, I had a condition, but I had no name for it. So what do I suppose I have this, oh, my condition is dizziness, plus, but nausea pluses. And that’s not a medical condition. So I along with the process of trying to understand how I’m supposed to exist in a space with uncertainty and deal with the fact that my resources weren’t dwindling enough. And also the fact that my HMO and my insurance wasn’t helpful because those doctors and those providers or weren’t familiar with how to put words to my symptoms I was, I was kind of like in a no man’s land to my son. So and it was only a couple of articles that I pulled up and I pulled it via his website that I got the word vestibular in my brain and that from there, I said, Let me follow this balance, best vestibular thing. And so once I found two providers on the Vita website, and went to talk to them had had consultations, they told me that I had three PD I had what I had a couple of things going on every PD, persistent postural, postural perceptual, dizziness, vestibular ocular motor dysfunction, post concussion syndrome, abnormal spatial orientation, binocular vision, vision, dysfunction, a whole host of other things, not just the vestibular, but I had the alcohol issues on top of that, and then there was issues with my somatic system and my whole central nervous system was inflamed on top of that, so me not knowing anything about all of this. I could you know, I just had to rely on those resources to help me connect the dots successfully. So because then I had the language to use to then file for the file for the disability benefits, which I rightfully should get because I paid in the FICA since I was 14 years old. So yeah, we’ll get it twisted people you get you should be you should get you’re entitled to get what you paid into the system.
Tracey Pate
Yeah, diagnosis you have you get unfortunately that you do have to have a diagnosis. And a lot of times it just like what you did Camille, I mean, you just kind of went down the rabbit hole and finding a doctor, I know something, you know, something’s wrong. I need to get to the right person. And so much of it is self advocacy on the part of the people Patient which is, which is difficult, but that’s why, you know, organizations like Vita just providing education and getting the word out that when you find, you know, when you find the right medical team, it can, it opens all kinds of doors. But even then it’s still, you know, vestibular disorder is one of those invisible disorders where, you know, you can’t confirm it by a blood test or radiology report. And so that makes it you know, that’s another challenge in the disability process as well. I
Camille Jackson
want to answer that Tracy because there were a few times where I was talking to providers, and they were gaslighting me like it’s all in your head. It’s just anxiety, you take a pill, and call me and a couple of weeks and I’m like, No, I can’t. And I had the dizziness that was not the vertical dizziness. That’s, that’s like this, my dizziness was like incessant drunkenness, like, I couldn’t keep still. And I was worried about myself, I had some some of the part of the struggle for me is trying to try and accept my condition was how I’m still in a in a career path. And am I going to show up somewhere looking like I’m drunk, and people want to get the wrong impression, I had a security clearance. So at the time, I was like, I need to figure out how to to keep this under wraps, until I found out what’s going on. So there was a little bit of vanity in there as a little bit of ego, there’s a bit of rage, there’s a little bit of just total frustration at the fact that I was getting gaslighted so bad. And I’m not faulting the medical community. It’s just they didn’t know it. So they’re trying to help me. And I’m trying to help them help me just try to say, Hey, I’m, he’s here are some articles I think may be relevant, and they take a look at them. And they’ll get I’ll keep it in consideration. And so it just was, I was just sitting in a medical mystery for about four or five years, and having these severe symptoms and not being able to do much of anything. So I got to the point is that how, how else could I get up and go to work? I mean, at the time, I was going through a work trip career transition. So I was not so much worried about that what I needed to do for work, but like I couldn’t, I was getting recruited for jobs. And I couldn’t take these interviews, because I was like I have I’m symptomatic with something I don’t know. And so I lost out on opportunities. Because here’s the symptoms, I didn’t have the stamina and have I wouldn’t have been a was not able to keep up with the rigor it would take to maintain a successful career path. So what’s left, I had to do something, my resources were running out. And I had to, to do what I had to do to try to file and it is a daunting process. And in the end, I don’t want to go too far here. But I just want to state how difficult it is my file to my my final hearing with the judge was 556 pages. So can you imagine backing from that, what it takes to build your case forward and explain and do all these things that they asked me to do and fill out this paperwork? ask you? What How was your day? What do you how do you prepare your meals? Can you do this? Can you do that you’re not, and then getting supporting documentation and dealing with doctors who may not even know what you have, and they can’t really give you supporting documents. So it’s just, it was just a little bit of, you know, type A, for me, I’m type a person with a type A attitude that, like, I’m going to be resolute about this because I’m gonna get what’s mine. But I still have a deficit, the functional deficit, so I couldn’t sit and do this stuff. So it took months it took months to even prepare the file itself. And then I had to help again, I had to have my mom help, because she was my secretary, I would just he would just dictate what I needed to say because I was like, I can’t read this stuff. It was
Kimberly Warner – Unfixed Media
so overwhelming.
Cynthia Ryan – VeDA
Yeah. Let’s, let’s start with that. What Tracy tell us how you how do you approach a disability claim? What what are the steps to take to file a disability claim?
Tracey Pate
So just kind of by way of background, and I’ll briefly describe what you have to prove. You have to prove that because of a disability, physical, physical and or mental. You are have been out of work or expected to be out of work for at least one year. So that’s kind of the You know that so if a client calls and says, Hey, you know, I broke my ankle, it’s going to take six months, and then I should be back to work. Do I have a case that the answer to that would be no. How I approach a case is I want to hear, I want to hear the individual story. For example, what Camille just shared, that’s where we’d start, she called, you know, I wonder if you can help me with my case. Tell me Tell me your story. Because everyone’s story is different. And from there, just having a conversation, I’m able to help the person realize that, hey, yeah, you do have a case, I would highly recommend that you pursue it. Or I might say, you know, I’m afraid that, you know, here’s, here are the reasons why I don’t think you’ll be successful. But But that’s, that’s what’s so important. And that’s one of the reasons I left my previous law firm because they took more of, you know, a factory approach. They were very mechanical. And in their intakes, they almost you know, they took every case, and then they just kind of got rid of the ones that that they didn’t think they could win. I just I did, that’s not how I wanted to practice. And so that’s why I opened my own firm, just so to give that personal service because, again, you know, you can’t, you can’t put people in boxes. Everybody’s got it. And that’s what Social Security tries to do. I’m sure Camille, you would agree with.
Camille Jackson
Yes, yeah. Yeah, I definitely agree with that. And before I found Sharon Christie was with your associate. We talked about before the recording, I looked on YouTube, I looked on Reddit Quora looked on Bar Association’s specializes in Social Security, I was trying to find and made a couple calls. And everybody said you must file first before we get involved and expect you’re going to get a denial. And that denial comes because Vestibular Disorders don’t neatly fit in their listings that they can easily check off to say, Okay, this is a condition that looks like it’s going to be severe terminal, or it’s going to be extremely unlikely that person will be ever be able to to get back to work. And those listings are, I don’t know, JC can tell me or not I don’t know if those listings have been updated in last 2025 years. There may be one or two listing for vestibular disorders. But I thought when I looked at them years ago, I may have been in years disease, but I don’t know if anything else beyond that is on those listings. Yeah. When they don’t check your boxes, the immediate denial, they don’t look into your story. So I had to improve that. Okay, I have a disability. So I got to do that. appeals to prove that, yes, have disabilities affecting my ability to work. And here’s how so I had to I collected all kinds of things where I thought I was giving some good support. Were supporting documentation. The people wrote letters on my behalf. I was keeping symptom notes, an app called migraine buddy, which basically said time of day you had a symptom. What did you use to resolve it? How long did it last? What was your medication and things like that? So I was I was relentless. I was keeping this very copious notes. So I just slammed all this stuff together had a binder probably like this thick that I sent my first appeal and got denied again. So
Cynthia Ryan – VeDA
what do people
Camille Jackson
all these people are like agreeing with me, you know, but it was hard enough to get people to understand it, put a name to my condition. And then when I have the condition, and when when the condition means something, and I can show and I can fully show that I have this condition. And it does affect my work because I can’t sit and watch the computer and type in the computer for eight hours a day. I can’t stand for this amount of time, and I can’t read and I can’t do all these things and sit on the phone. What else do you want to hear? So I I got a little bit enraged again, thinking that perhaps it was TMI, maybe I gave them too much information. I’m thinking I’m thorough. Um, but it still wasn’t good enough. So yeah.
Tracey Pate
So also when an individual is under age 50. Yes. It’s very difficult to get to get them to approve you. Right because that they the standard is you have to show not only can you not do your past work, but when you’re under 50, you have to also show that you can do any work that exists in significant numbers in the national economy on a full time basis. However, when you turn 50, they start taking marketability into consideration, you know, as we age, we’re less marketable. So they’re they Social Security, I think, has blinders on, when people are under 50. You know,
Kimberly Warner – Unfixed Media
so what does that look like Tracy, for gig workers, I’m assuming it’s similar. Went for people in the creative industry where their, you know, jobs might be more sporadic. But you also as a creative myself, you have to go after those jobs, you have to have the bandwidth to go after those jobs in order to get the jobs. And so I know a lot of people that end up, you know, with vestibular disorders in the creative world, and they can’t even tell they can’t show that, oh, I’m been out of work for a year because they haven’t even had the opportunities to get that work. Does that make sense? Right?
Tracey Pate
It does, it does make sense. So there is you can do some work with it like it doesn’t, you don’t have to be completely off work for that year long period. There’s a certain level of earnings that a person can make per month, I think it’s about $1,400 in 2024. pre tax, and that is considered under what they call substantial gainful activity. So like for gig workers, that would be an example. Or if you know, you’re only able because of your disability to work, say 10 hours a week, that can be considered not to be substantial gainful activity. The key is, you know, what are your doctors saying? Like, if Sometimes people try to keep their earnings low, just so they can qualify? But I tell them, you know, it depends on what your doctor say, because at the end of the day, you’ve got to show that you’re incapable of full time work. And that has to be there has to be a medical basis for that. So So yeah, if that answer
Camille Jackson
is, can you add to your point about substantial gainful activity, I was looking at my decision, my favorite decision after I had two appeals, and there was a term of art that says Residual Functional Capacity, they found that I had functional capacity, but I was not what was not going to be considered a reliable employee, because of the the symptoms that will be trigger may cause me to be off of work unexpectedly for maybe one or two days per week. And then on top of that, there was another statement that they said that, if you said that, given the Residual Functional Capacity then and her inability to do certain things that there is not going to be any work in the national economy, where she will be able to function something like that. I can’t remember I got it.
Tracey Pate
I think I know exactly what you’re saying, Camille, so unlike, you know, a physical impairment, like let’s just say a person has been, uh, you know, worked construction his whole life and suffers a back injury and, you know, can no longer can’t has trouble lifting and standing and sitting things like that. The Residual Functional Capacity means, what, what abilities does this person have now? And would those abilities translate into any other type of jobs. But there’s also other things that need to be considered besides like those exertional requirements, and one thing is the ability to maintain productivity in the workplace, and also the ability to maintain attendance that would to a level that would be tolerated by an employer. And in general, a vocational expert will say, if a person misses about two days a month on an unscheduled basis because of their disability, they’re not going to meet the productivity requirements that would be or the the the productivity requirements that would be required in a competitive work environment. And therefore, you know, there would be No work. So that would make sense like with your symptoms, even though maybe during that, you know, you’d have some good days and some bad days, you still would have too many absenteeism due to flare ups, or you wouldn’t have the ability to make it through an eight hour day.
Cynthia Ryan – VeDA
Right? So if you so if you are working, let’s say you’re you’re working when your distributor problems starts, and it starts to affect your attendance like Camille, you were saying that you couldn’t, you know, you had traveled a lot, I’m guessing that it affected your ability to travel or so you start having these shall we say, incidents at work where you’re not able to, you’re actually not able to perform your job, you’re not showing up for your job? Does that? I assume that that would help? If you have, yes, that on your record some ways, if you’re, if you are working, and you try to continue to work, and don’t perform up to standard, that would help your case? Am I right? Yes,
Tracey Pate
yes. And, and what would even be more helpful is if somehow it’s documented, whether that be by attendance records, or, you know, if you work for a large employer, if you know, you, you have letters from doctors stating that, you know, you need to be off for a couple of weeks or two, you know, describing it as well, is, is great, but if it can be supported by some sort of documentation, that would be super helpful. Right.
Cynthia Ryan – VeDA
And Camille, you were talking about that also in terms of so we just to kind of recap, you have to have a diagnosis, and then you have to document your functional limitation,
Camille Jackson
life activity, functional activity, meals, bathing, it daily activity, right. And
Tracey Pate
early on in the process, we’ll send you a form, it’s called functional work proportion report, where you you fill that out and you describe, you know, how you spend a typical day, what kind of what, you know, what your limitations are
Camille Jackson
added. And I added an extra sheet of, of information about my schedule, which was related to what happens, what do I have to do when I get up with these limitations? Right, then I had therapy sessions that I was going two to three times a week. And then I had I had had at home activities that had to do in the evening. So I had mapped out a 12 hour day, from 8am to, you know, 8pm and beyond just to show what was going on at the time, that wasn’t persuasive in the first and second round of it. But toward the end of the hearing at the at the hearing it was persuasive, because that showed that I was not going to be at my level of rigor to do the type of work that I that I had the education to do, which was I was a policymaker had a background, I’m a legal background, and I’m, you know, working as a diplomat. So, yeah,
Tracey Pate
those first those first two levels, they, they’re there. I call them the rubber stamp levels, because that’s what they are. And we just got new national numbers that at the initial level, you file your application, that’s called the initial level, the approval rating, there are no the denial rating rate there is 65%, then is the first appeal, which is called the reconsideration level. The denial rate is 85%. And it usually takes a hearing to get approved. And that’s because it’s the first time you’re you’re able to tell your story to a human being and not a rubber stamp.
Cynthia Ryan – VeDA
Let me ask. I haven’t sorry. I have another question. And the reason is, so one of I was speaking recently to a woman who is a vestibular patient, and interestingly, before her vestibular disorder, she was a so she worked for the Social Security Disability department, and she evaluated claims. So she has a really interesting perspective. And she was so here’s my question. What can someone do she, she was saying, you know, as a person evaluating claims, she doesn’t want to deny people but she has boxes she has to check, you know, so I’m, I’m guessing that there’s a lot of a lot of detail that goes into making sure all those boxes are checked off. And that’s something that an attorney, like you, Tracy can help with. What can someone do to increase their chances of getting approved? Earlier in the process? How can you make sure those boxes are checked off?
Tracey Pate
So the most important thing I would say, is making sure your symptoms and your complaint are well documented in your medical records. At the end of the day, your case is only as good as your medical records. So if you’re going to your doctor, and you know, yeah, I’m, I’m still, I’m still a little dizzy, but you know, everything’s pretty stable. That is not as helpful as you know, I can only I can only stay awake for six hours. In a day, I have to take a two hour nap, I can only, you know, I can only do a task a household chore for 10 minutes, and then I get dizzy, and I have to lay down. And so the more detail you can provide in your medical records, to make your medical records, marry your symptoms, and what’s on that function report and the things that you’re saying. The better your chance.
Camille Jackson
So add to that, I think, Tracy, you familiar with the medical source statement of ability to do work? Yeah, activities that won’t be document something something. I had somebody who was very instrumental of filling that out and also providing supporting material to that document with attachments to that document, because I mean, she was saying she can’t read the screen without being vomiting. When you stand up and turn around, she could slip fall over or use of the using the phone. Smartphone and scrolling is difficulty even talking and having conversations like this will be a brain guzzler. So again, it also is with a your relationship with your provider. Yeah, you find those right people and it’s gonna take some huge fortunate that you have all of this that you want to share, but you’re stuck on that first level of review that just stuck with those listings. And those listings are just hard and fast. 1234 tests you can probably speak on, like what listings get the most approvals.
Tracey Pate
So, what Camille’s talking about, they’re called listing of impairments. And you can actually just Google you go, yeah, listing of impairments, SSA, and there are a list of medical conditions that you are presumed disabled, if you have any of them. Yes. So yes, that is very important. They do look at that at the initial level, but also at the initial level, you know, they they look at what you were saying, Camille about the residual functional capacity. So they assess that as well. Like how much can you lift? How long can you stay? How long can you sit? How far can you walk? But they’re what they’re missing is those other nuances of but I can only sustain a task for so long. Yes, I can sit but you know, after so many minutes, I lose my concentration because I’m disease, you know, a vertigo. So that’s what’s missing at the first two levels. And it’s not something that they ever take into consideration.
Well, another problem as well as because
Kimberly Warner – Unfixed Media
as I want to speak to everybody in the vestibular community, but I’ve found over the last four years and maybe Cynthia, you can attest, a lot of vestibular patients, for whatever reason are perfectionist, they’re type A, they are pleasing to a fault that so they self included will go to a doctor’s appointment with a sunny face and validate what they’re saying and downplay our symptoms. We will work and push through the symptoms. So we ended up at jobs that we you know, shouldn’t be at, and then we pay for it for the weeks following. And so there’s this period of time where we Don’t, you know, we aren’t being I guess, emotionally honest with what is actually our experience, which probably further delays this process? Yes. Yeah.
Camille Jackson
I mean, that’s true. I mean, for me, I was just about I’m gonna get with mine. I paid into Fico. So what what are we going to hear so and I just, I was just that kind of person that I was advocating for myself, and I’m going to go and go get what I need. And if you’re not, the person is going to help me, I’m going to move to the next one. And keep going till I get the answers that I need. And so that was my, that was my routine for three or four years just trying to like you’re not helping me to move on, let me move on. Not everybody has that. Wherever thought was, there might be transition. No, they’re not. They don’t feel well to do that. I’m in a metropolitan city outside of Washington, DC, we’ve got Johns Hopkins, we’ve gotten national health, Student Health, I mean, there’s a whole host of medical professionals out here with research and so on and so forth. Not everybody’s in a metropolitan area where they have that kind of resource. Some people are in small towns where there’s one doctor one hospital, and that doctor has no clue about Vestibular Disorders, because they probably have never seen a patient or treated a patient with vestibular disorders. So it all depends. And on, it also kind of turns on where you are and how you’re able to maneuver and navigate through that bureaucracy. It just so happens that just I just had the personnel and that was not gonna take no for an answer. But that’s not that’s, that’s that. But that speaks to the Social Security disability process, because it doesn’t make it easy for people now yet, get up and get out of bed and do it. It was hard for me, I had I had I had a great network of people that will get up and say, let me write this report for you. Let me do this, let me do that. I’ve just had that benefit. But I can guarantee this other people in vita, Cynthia that are not, that don’t have that social network are familiar ties for people to to advocate for them.
Cynthia Ryan – VeDA
And that’s, that’s why we, you know, we want to, we wanted to invite Tracy on and so people recognize the role of a social security disability advocate and how they can help you early in your process. And one other, Camille, you were talking about? How you had people like your mother helping you with your documentation, because there’s a lot of everybody listening to this knows the, the cognitive fatigue that goes along with having a vestibular disorder. Tracy, is there are there tests, or Camille, do you know? Are there cognitive tests? You are? You’re saying that we we need to get information in our medical records, are there other cognitive tests that can that can help someone document the the cognitive problems that they’re suffering from and how they would affect them in terms of being able to work. So
Tracey Pate
I can tell you that Social Security will oftentimes send someone for what they call a consultative evaluation. And in the case of whenever a cognitive impairment is alleged, if there hasn’t been any sort of testing done by the by the claimant, prior to filing, Social Security will send the claimant to a psychologist for cognitive testing. I’ll do IQ testing, memory testing, language testing, things like that. And they get, you know, they’ll, they’ll get a history. And so So, you know, that is one thing that Social Security does. But I think it would be a great idea if if it’s available and covered by insurance for for people with vestibular disorder who were really bothered by the cognitive symptoms, if they could get some sort of cognitive testing done. prior to filing that would be helpful also,
Camille Jackson
for me, I again, I’m in a great metropolitan area with a lot of specialists I went to two providers, one was Dr. Bryce Applebaum. Appelbaum vision, who helped connect the dots with the vestibular ocular piece and that was supported by Jacqueline door Dr. Jacqueline door new revision neuro neuro vision therapy in Rockville, Maryland, outside of DC. And they had had things like call it out something called a Realizer I mean, they were there to test my eye movements. And they also tested my memory cognitive ability, reading comprehension based on the ocular piece of it. And then Dr. Door said, we can’t even get to the vestibular aspect of it until we deal with your ocular aspect of because those signals are not even coming together. So that takes resources, that’s foreign. That’s five minerals. So it’s still a drain on resources. And I don’t know if that’s something that we could do at vita, is to kind of find a few people who will be available to be of service to folks, and I don’t know if we can raise money for these types of tests. But, um, it took that type of very specific, it was a, it was like a neurology, then you have optometry, then you have neuro optometry and then you have new otology. All these sub specific areas of medicine that I just kind of found my way to, and those tests are helpful to understand and define might, but that’s not gonna, that’s not going to come from the Social Security Administration. So it’s just a matter of detail. Yeah, it’s not the not going to be detailed for something cognitive, is this going to be like, can you think me chew gum and think and write your name? That’s not it. I mean, I had really, they had to do a lot of work to understand what my eyes were doing, and then how and how that affect balance and how the ocular motor dysfunction, the vestibular dysfunction, were all like working against each other why I was always
Tracey Pate
and that’s super helpful, because suddenly, you’re able to provide objective evidence right now, which is, which is what they love. Cynthia,
Kimberly Warner – Unfixed Media
it would be really interesting to find a way to help people get these tests because I mean, it’s sort of a catch 22 You need money to get SSDI aside to get money. Similar to I just heard Conan O’Brien say this in Hollywood, you need a an agent to get work, and you need work to get an agent. So it does, you know, I can hear the listeners, you know, there’s so much information here. But I can also feel the frustration of like, well, how if these are the tests that are going to really provide the information that we need, how do you get it if you if you can’t work?
Camille Jackson
depends on the specific diagnosis. I mean, I connected to Vita because my first diagnosis with BPD, but you have people who invest in Vestibular neuritis, and other people would best fit into migraine. There might be different tests that relate to those specific conditions. So, yeah, how do we Yeah, that’s organized around that so that people can get what they need.
Cynthia Ryan – VeDA
That’s definitely you know, right and what is right in VITAS wheelhouse is educating people about their conditions and getting them connected to the specialists that can help them and that’s a multi disciplinary team that includes, you know, a medical doctor, whether that’s a otolaryngology otolaryngologist, a neuropsychologist, a neurologist, it includes, you know, visiting an audiologist to get testing and includes the, your physical therapist, and, and possibly a psychologist or psychiatrist and, and I like adding this cognitive component on there as well. So that’s definitely and, and it is a, you know, this isn’t the the topic we came to discuss today, but it’s a complex system, because there’s more to it than just the SSDI. You know, there’s the insurance part, you know, your medical insurance and getting, you know, if you’re, you stop working for, you know, for for Medicaid, or Medicare, and then there is also short term and long term disability, which I just want to at least mention, though, that’s not what we’re talking about today. So people understand that you if you’re working for especially a larger employer, they may be paying for short term and or long term disability for you. And you would want to be applying for those first before you apply for Social Security Disability. And of course, we’re talking about this from the, from the US perspective, the United States, I’m sure it’s different in different countries. But I think the what we can all learn is that the process of preparing yourself to apply for some sort of disability insurance is it’s a very detailed process. We need to and I’m just going to reiterate this for for everybody. It seems like the key is to document hear your experience, and especially get it documented in your medical records, right?
Camille Jackson
Yes. Cynthia made a great point. Because if you work in the private sector, you have your company benefits may include short term disability. And also you want to talk about people who have been in the military that might be going through the VA disability system. And then on top of that, then you have SSD SSDI. So you’ve got three trains running for some people. And sometimes those trends are not, are not there’s no through line through each system in our process. So I don’t know what Tracy would say, you know, what she should approach approach first, oh, well, you should hold off on.
Tracey Pate
Definitely, if you have private disability, short term and long term, you should do that first. Because you’ll get those benefits will come quicker, right. And with those benefits, generally, the standard is all you have to prove is that you can’t do your last job or your past job. Right, you don’t have to go that extra step like you do in Social Security just show that you can’t do any other jobs. And ultimately, if you know those short term converts into long term, long term is going to make you apply for Social Security Disability anyway, because they’ll they have a lien on any social security benefits, usually, the Long Term Disability benefits higher. And so once social security comes through, the LTD company gets paid back. So yeah, so it’s good to to and I also feel the same way about VA disability benefits, you know, really, you could apply for all at once, to be honest, but the private disability is going to go over first, gotcha award
Camille Jackson
or be much more robust than than the award of benefits you get through SS VI. Yeah, beware that you that there’s a cap on the amount you get per month, and may not take care of all of your bills, or what happens
Tracey Pate
based on your monthly amount is based on the amount of Social Security you you’ve paid during the course of your working life. And one important thing, which I don’t want to forget to mention is, the first thing everyone should do is go to SSA dot geo V, which is a Social Security website and create an account. From that, it’s very easy to create an account, they just verify your identity you put in, you know, your social security, your date of birth, your name, but that that account can tell you so much. It’ll tell you, if you became disabled today, what your monthly benefit amount would be, it’ll tell you what your retirement benefits are, depending on what age you decide to retire, it’s it gives it’s a wealth of information. And that is one thing the Social Security Administration has done right, they’ve made their website very user friendly. And from there, you can also file an an online application for disability benefits. So yeah, the I would say everybody should do that. Really, even even everyone should do that. Because, you know, they we should know what, what, what our future holds, and not just not let you know, the government know all those things.
Cynthia Ryan – VeDA
So here’s my last question is how does somebody find an advocate like you to help them with a disability claim? And what does that look like, for example? And I’m maybe gonna put words in your mouth, but do they pay you upfront? Or do you get paid after the fact?
Tracey Pate
So right, so all Social Security attorneys, we are bound by what’s called a statutory fee, which means we only get paid if we win the case. And it’s the lesser of 25% of any past due benefits owed, and it’s capped at 17 $7,200. So that’s the most we can be paid. So there are no upfront costs. And that I think, you know, that some people are afraid to call a lawyer because they immediately think that you know, that, Oh my gosh, they’re going to charge me consultations are usually always free. So I’ll say No, for me, they are. So I get a lot of people that call just for information. Um, Happy to, you know, to answer questions and things like that. But finding a lawyer, you know, it’s I’ve been doing this a long time. And it’s been different. It used to be, you know, the TV lawyers and now online, look at reviews, that, you know, you can learn a lot from that. Also, you know, anybody can be a Social Security advocate. So there are, there are organizations out there that have non attorney advocates. And I don’t think anyone benefits from that, because non attorneys advocates are not bound to the ethical standards that lawyers are, you know, we are bound by, in my case, the Maryland Rules of Professional Conduct. So, you know, I would always say that it’s better to make sure the person’s actually an attorney. And finally, you want someone who dedicates their practice to this type of work, you don’t want a jack of all trades lawyer, because this is such a niche, and it changes. So quickly, the laws change. So I would say that, you know, those would be that would be a priority. So no Better
Kimberly Warner – Unfixed Media
Call Saul for this.
Camille Jackson
No, no. Don’t call somebody on. Advertisement don’t know, yeah, I need to look for somebody that’s that their, their firm is dedicated to disability law. Absolutely. You guys know those nuances and know the terms of are, they’re not going to be scurrying around, they probably have, you know, knowledge management, they probably have institutional knowledge that goes very far. And it probably helps them try to speed up and also learn the tricks that they you know, have the trade to try to get through some of the bottlenecks that Xactly claimants go through. So someone who’s doing a little bit of everything, won’t know those things. Exam, I want to add one other thing too about working, you still can work to some degree, once you get a benefit. I know I am doing some stuff, just tried to create some things for the future because I’m, I’m terrified about retirement. Because once I left my career, and I stopped working, and then my resources were dwindling, then it was like I had to empty out a brokerage account, I had to empty out savings just to kind of keep up with all the things that I wanted to do. So there might be some things that people need to do to kind of pre prepare for that if you have savings, if you have investments or something, set some stuff, set some money aside. Because that process takes forever, it takes at least six months to even go through the first hurdle. And then from the second. And if you get denied, and from denial to the second phase, who knows six, maybe more, maybe more six to nine months, it probably took me up to two years to get to the hearing phase. So we have to kind of be prepared for that or not. But then if you get an award, they will award you back pay from the time that you filed and when you claim disability. So there’s some calculations that happen once you get the award. And there may be some offsets for monies that you’ve had made. And also at that, once you get an award, I think there’s a limit per month that you can work, I think you can get work and get an income of no more than $1,200. Tracy,
Tracey Pate
it’s it changes every year. But there’s a great, yeah, there’s a great publication that Social Security puts out every year called working while disabled. You can find that online and it tells you each year what what the limits are where you can you are able to make some money.
Camille Jackson
Right? Right. It does, it does. It is part of the a wellness thing to know that you can do something and you’re not sitting at home with the symptoms all day. So if you can be productive in a little bit of way, just get a little something to kind of support your award and that helps in the healing process, I think but I’m from for me right now. I’m trying to work on some creative projects that I think will help me down the road there will reap some benefits down the road. You know, and I had some inheritance that I had was subsisting off of and and some other things that were in a trust that helped me out but not everybody is going to have that kind of fiscal safety net. So
Cynthia Ryan – VeDA
yeah, This has been super informative and I think that we there’s no way we can cover everything but I hope that this has helped some people out there who were who are going through the disability process or considering going through the disability process. I want to just mention that Vita has a page on our website that has information about how to apply for both short and long term disability, social security disability and tips for applying for disability as a vestibular patients specifically so go check that out. Thank you so much, Camille, sharing your and your expertise and useful
Kimberly Warner – Unfixed Media
incredible. You I learned so much just myself.
Cynthia Ryan – VeDA
All right. Well, thank you everybody, and till next time. Thanks for tuning in to ICU this month. We hope
Kimberly Warner – Unfixed Media
this conversation sparked new understanding of the vestibular journey. And for all of our patients out there leaves you feeling just a little more heard. And a little more seen. I see