Getting Long-Term Disability Benefits for Stevens-Johnson Syndrome

Welcome to Season 5, Episode 30 of Winning Isn't Easy. In this episode, we'll dive into the complicated topic of "Getting Long-Term Disability Benefits for Stevens-Johnson Syndrome."

Most people expect Long-Term Disability insurance to step in when illness or injury prevents them from working. But for those living with the aftermath of Stevens-Johnson Syndrome (SJS), the reality is often far more difficult. Triggered by common medications, SJS is a devastating condition that can cause blistering rashes, organ damage, and lasting complications like vision loss, chronic pain, and breathing problems. Recovery may take months, but the effects can last a lifetime, making work not just difficult, but impossible. That’s when disability benefits should help. Instead, insurers often downplay the severity of SJS, deny claims by insisting patients have “recovered,” or ignore complications that make steady employment unsafe. In this episode of Winning Isn’t Easy, disability law expert Nancy L. Cavey explains what it takes to file - and win - a Long-Term Disability claim with SJS. You’ll learn what evidence matters most, how to document your limitations, which complications are commonly overlooked, and when to bring in legal help. If you or someone you love is battling the effects of SJS and struggling with a disability claim, this episode will give you the tools and strategies to fight back. Winning isn’t easy, but with the right approach, it’s possible.

In this episode, we'll cover the following topics:

One - Understanding Stevens-Johnson Syndrome (SJS) and Its Impact

Two - How Disability Carriers View SJS Claims

Three - Appealing Denials and Maximizing Your Claim

Whether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.


Listen to Our Sister Podcast:

We have a sister podcast - Winning Isn't Easy: Navigating Your Social Security Disability Claim. Give it a listen: https://wiessdpodcast.buzzsprout.com/


Resources Mentioned in This Episode:

LINK TO ROBBED OF YOUR PEACE OF MIND: https://mailchi.mp/caveylaw/ltd-robbed-of-your-piece-of-mind

LINK TO THE DISABILITY INSURANCE CLAIM SURVIVAL GUIDE FOR PROFESSIONALS: https://mailchi.mp/caveylaw/professionals-guide-to-ltd-benefits

FREE CONSULT LINK: https://caveylaw.com/contact-us/


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Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals. 

Transcript

Speaker A [00:00:00]:
 Foreign hey, I'm Nancy Cavey, national ERISA and individual disability attorney. Welcome to Winning Isn't Easy. Before we get started, I've got to give you a legal disclaimer. This podcast is not legal advice, the Florida Bar association says. I've got to tell you that. But now that I've said it, I want to assure you that nothing will prevent me from giving you an easy to understand overview of the disability insurance world, the games that carriers play, and what you need to know to get the disability benefits you deserve. So off we go. Today I'm going to be taking a close look at a rare but devastating medical condition that can upend every part of your life, including your ability to work.
 
 Speaker A [00:00:50]:
 It's Stevens Johnson Syndrome or sjs. It's often triggered by a reaction to common medications. It's a severe disorder that causes painful rashes, skin blistering and damage to mucous membranes, eyes, lungs and other parts of your body. Now, recovery can take months and for many the complications linger far beyond the initial crisis. Visual problems, respiratory issues, scarring, chronic pain, all of those conditions can can make returning to work not only difficult, but dangerous or even impossible. This is where long term disability insurance is supposed to help you. Now, if you purchased policy or are covered under a plan through your employer or you've purchased a disability policy privately, a purpose of long term disability benefits is to provide you with income protection when you're no longer able to do your own occupation or any occupation due to a serious medical condition like sjs. Now it doesn't matter that you might have a different medical condition like fibromyalgia pd, a back injury.
 
 Speaker A [00:01:57]:
 The reality is that insurance companies don't always understand what it means to live with the long term effects of any of these medical conditions, much less sjs. I often see claims get denied, appeals delayed, and all too often patients are told that they've recovered when they're still grappling with life changing symptoms. Now, even though you may not have sjs, the things that I'm going to talk about today as I walk you through everything you need to file about filing a claim are applying to many medical conditions. I'm going to talk about what you should expect from the claims process, how you prove your limitations, what complications specifically in SJS that are overlooked and and when you should bring in a legal expert. So if you or someone you love has been affected by SJS and is struggling to get the disability benefits they need, this episode is for you. But as I've said, if you have another medical condition. You can learn lots from this episode and I would suggest to you, particularly if you have fibromyalgia, if you have long Covid. These are the types of conditions that that I find that disability carriers specifically don't understand.
 
 Speaker A [00:03:12]:
 And the misunderstandings in those types of conditions are the same kinds of misunderstandings. And I'm using that word in quotes that we see in SGS claims. So let's talk about three things. First, understanding Stevens Johnson Syndrome SJS and its impact on your ability to do your owner any occupation. Two, how disability carriers view these claims and and three appealing denials and maximizing your claim. Let's take a break before we get started into this insightful episode.
 
 Speaker B [00:03:44]:
 Have you been robbed of your peace of mind by your disability insurance carrier? You owe it to yourself to get a copy of Robbed of your peace of Mind, which provides you with everything you need to know about the long term disability claims process. Request your free copy of the book@kvlaw.com today.
 
 Speaker A [00:04:18]:
 Welcome back to Winning Isn't Easy. Let's talk about understanding Stevens Johnson Syndrome, SJS and its impact on functionality. So the obvious first question is, well, what is sjs? It's rare, but it's a serious disorder that affects the skin and mucous membranes. It's usually triggered by a reaction to medication, infection or both. Now what are some of the medications that are known to cause sjs? Anti gout drugs, medication for seizures and mental health conditions, including anticonvulsants and antipsychotics sulfone antibiotics medications used to treat HIV Common pain relievers such as acetylphenine, Tylenol, ibuprofen, Advil, Motrin and naproxen sodium known as Aleve. If you have a weakened immune system due to hiv, aids, chemotherapy or a genetic predisposition, you're also at a greater risk for developing sjs. So it's not just medical, it's just not a weakened immune system. It could be a reaction to medication or it could be infection or it could be a combination of all of those things.
 
 Speaker A [00:05:30]:
 There's just not one cause of sjs. But what is important is the disabling signs of sjs. It begins with the flu like symptoms and within a few days a painful rash develops and it spreads followed by blistering. Now the top layer of the skin dies, peels and eventually heals, but that happens over weeks or months. But you'll also see some other symptoms. Fatigue, burning eyes, widespread skin pain, a red or purple rash that spreads blisters on the skin and in mucous membranes like your mouth, your nose, your eyes, your genitals. You'll also see shedding of skin within days after blistering. It's clear immediate medical attention is essential, but I find that recovery is often long and it's complicated by chronic issues, much like, if you will, many of the long Covid cases that I have where medical care is essential.
 
 Speaker A [00:06:32]:
 Recovery is long and it can be complicated by long term chronic issues based on system involvement. Now, the complications of SJS can be long term and they can be disabling even after the initial reaction. SJS can lead to serious, long lasting complications and these include blood infections known as sepsis and potentially a progression of the infection causing organ failure. It can be eye disorders like chronic dryness, inflammation and even blindness. It can be acute respiratory failure. It can be disfiguring scars and pigmentation issues. Each of these complications can be disabling physically, psychologically and and vocationally. And certainly those complications can dramatically impact a person's ability to do their own or any occupation, individually and in combination.
 
 Speaker A [00:07:26]:
 As we work our way through this podcast, I want you to be thinking about the part of your body that is involved and be thinking about the physical problems that you have. Think about the psychological or cognitive problems that you have because of the appearance of the scarring or because of the pain. And think about how these problems will impact you vocationally in terms of your ability to do your own occupation and any occupation, because it's going to be crucial to develop this to be successful in your short or long term disability claim. So I've given you a basis. Go get a pen and a pencil because we're going to take a break and when we come back we're going to delve into this in greater detail. Got it? Welcome back to Winning Isn't Easy how disability carriers view Stevens Johnson Syndrome's claims and what their problems are with understanding these claims. So let's start out with the basics. Do carriers understand SJS syndrome? Well, I will tell you, I don't think so.
 
 Speaker A [00:08:46]:
 They don't necessarily understand what has precipitated sjs and many times they are looking for objective evidence that causes that will result in the diagnosis. And there is no gold standard test to understand, if you've had a reaction, if you will, through the various kinds of medications that I discussed in the last segment of this episode. But clearly they can measure, if you will, objectively the impact that the symptoms have generally by body system. And what do I mean by body system? I'm also a Social Security disability attorney, in addition to being an ERISA disability attorney. And I tend to think in body systems, you remember the body systems that you learned in high school biology. In high school biology we learned about the pulmonary system, we learned about the skin, we learned about the digestive system, we learned about the visual system. So I think about these cases based on body systems and I know that disability carriers are looking for an objective evidence of the diagnosis. And of sjs, they're also going to be looking for objective evidence of the system involvement.
 
 Speaker A [00:09:59]:
 So in terms of, for example, a pulmonary condition, they would be looking for objective testing such as pulmonary function tests. Once they get past, if you will, the objective basis of the diagnosis, I will tell you they don't understand the severity of SAS or its long term consequences and they tend to apply a one size fit fits all approach and they fail to recognize the disorder's complexity based on multi system involvement. So can you get long term disability benefits for sjs? Well, the answer to that is yes, but it depends. It starts with understanding your disability insurance policy or plan and that there is a definition of disability in each policy or plan and there's no one uniform definition across the insurance industry in the United States. You need to get out that policy or plan and understand what it is you have to prove to get your benefits. So for example, you might have a policy or plan that says, look, if you can't do the material and substantial duties of your own occupation, we will pay you benefits for, you know, up to maybe two years, depending on the policy term provisions. Now you obviously need to understand what they mean by disability and what they mean by occupation. As you go about answering the kinds of questions that I outlined for you in the last segment of the episode, because you want to begin be thinking about this in terms of the system involvement.
 
 Speaker A [00:11:37]:
 You have visual issues, do you have pulmonary issues, do you have gastroenterological issues, do you, do you have issues with any other body system as a result of SJS that could impact your ability to do your own or any occupation? Now, as you're thinking about this and doing your documentation, you also want to think about the things that the carriers just don't understand about sjs. They don't understand the unpredictable course of the condition. So you may have problems with flares that you need to be able to explain in your medical records and as you're presenting your claim to the carrier. They certainly don't understand complications that can affect vision, breathing or skin sensitivity. They do not understand fatigue and chronic pain and they don't understand psychiatric symptoms like depression or anxiety stemming from the disfigurement or the pain that you are having just doing the basic activities of daily living. These are things that you need to address in your medical records and in your claim. What are the key steps in the long term disability claims process? Well, you're going to be asked to complete a work history form that explores the physical, mental and cognitive demands of your occupation. And you want to note the tasks that you can't perform or you have difficulty performing.
 
 Speaker A [00:13:01]:
 So let's think backwards here. If you have visual issues, you may have problems reading screens, working in a bright light, you might have difficulty being in a working under fluorescent lights, you might have difficulty with just reading documents, paper documents. You want to be able to note those visual problems that you're having as it relates to not only your occupation, but your activities of daily living. So you may have difficulty driving, for example. How about the respiratory function? Well, you may have pulmonary issues that impact your ability to stand, walk, climb, stoop or bend. So you want to make sure that you're addressing those in your history to your doctor in terms of your symptoms and functionality and in your application and of course, how you're completing that work history form. Because the carrier needs to understand what the occupational demands are. In my view, based on body systems, you might have trouble with dexterity using your hands or even wearing protective clothing.
 
 Speaker A [00:14:09]:
 Dexterity is important to many jobs. You have to generally be able to engage in bilateral hand movements, shoulder movements. So if you have problems with scarring that impacts your fingers, your wrist, your arms, you may have scarring that impacts your ability to just do fine and gross motor movements. Something as simple as picking up coins or keyboarding or your occupation may require you to wear protective clothing. If you have to don clothing and other equipment, you need to have dexterity to get things on or take things off. You might also have problems with pain and fatigue. Now, that may not be system based or it may be system based. In other words, if you have a respiratory problem, you probably have shortness of breath, which causes fatigue.
 
 Speaker A [00:15:06]:
 If you have visual issues, you might have visual pain. Again, I think about this in terms of pain and fatigue in terms of body systems, and I want to be able to present to the carrier these particular issues. Now, what you're going to see is you're going to also be asked to take peer doctor forms called attending physician statement forms. And these forms do not ask the right questions. And I think that's on purpose. Now what I try to do is to supplement an attending physician statement form with the right Social Security Residual Functional Impairment form. So we have RFC forms for skin disorders, for visual impairments, for pulmonary issues, gastroenterological issues. I always want to try to supplement, if you will, that APS form, the disability APS form with the applicable Social Security disability form.
 
 Speaker A [00:15:56]:
 So you can see here that as you go about filing a claim, you want to make sure you're giving, well, one, you understand the definition of disability and occupation and that you're explaining that to your doctor. You want to make sure that you're really giving a good history to your doctor of symptoms and functionality, particularly between visits, taking photos as appropriate, but making sure they've got that log that you're keeping and make that a part of the claim. You also want to make sure that as you're filling out the work history form, you're thinking backwards. What are the occupational duties that I cannot do or have trouble doing? Again, I think you should be thinking about that based on visual systems and when you're filling out the activity of daily living form that the carrier is asking you for, which is open ended, which is a different issue, you need to make sure that you are thinking backwards again. What are the body system involvements? What are my limitations? And lastly, of course, when your doctor fills out those blasted forms, you want to make sure that, that you've explained to your doctor what your occupational duties are, the problems that you have performing them, and have them address that based on body systems, if you will. So why is that all important? Well, as part of the analysis, the carrier is going to evaluate your occupation under the Dictionary of Occupational Titles, which is commonly used in disability claims. They are going to basically classify your work as sedentary, light, medium or heavy. And they're going to compare your medical records, what your doctor has to say about your limitations to the occupational duties, and say, well, can you do those occupational duties? Can you do some of them? Are the duties that you can do or can't do material and substantial.
 
 Speaker A [00:17:48]:
 Again, this is the way in which they're going about the analysis. Hopefully they'll determine that you can't do your own occupation and pay benefits. But you need to understand that after 24 months, most policies switch to an any occupation standard. And that means that you have to be unable to work in any job or occupation, rather based on your skills, education and training. So let me give you an example. It might be that, and this is common, that the carrier thinks that you can do any occupation that allows you to sit well, most Occupations that require sitting also require visual acuity, they require bilateral manual dexterity, and they require sitting. So if you, because of your sjf, SJS rather have problems with scarring on your hands or fingers, if you, if you have visual issues, if you have scarring on your buttocks or down your legs that make it difficult to sit and you're up and down, those are things that need to be developed. Because ultimately it is those system complications and symptoms that can make it difficult, if not impossible, for you to meet the ability to do any occupation and therefore get your any occupation benefits.
 
 Speaker A [00:19:12]:
 And so you can see, and I'm harping on it, that we want to develop the symptoms by systems and talk about the limitations functionally, cognitively, psychiatrically, both from an own occupation stage and in any occupation stage with of course, the support of your doctor. Got it? Let's take a break.
 
 Speaker B [00:19:37]:
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 Speaker A [00:20:26]:
 Welcome back to Winning Isn't Easy Appealing Denials and Maximizing your SJS claim. I've alluded to and touched on a little bit about the any occupation game. Now carriers rarely want to pay benefits beyond two years at the any occupation stage. They'll assess whether you can perform other work generally in the national economy, regardless of whether you could actually obtain such a job or sometimes regardless of the wages that it pays. Education, your education background, the skills that you've learned in other work and your age are going to be reviewed as factors. But I will tell you that age is given minimal weight, if at all. Now what's going to happen is that the carrier is going to use a vocational expert to first determine what your past occupation was, the strength level at which it was performed, and the skills that you would have learned by virtue of that occupation. Then generally applying the carrier plans to doctor's opinion about your restrictions and limitations are going to determine whether you have any the skills that you have would transfer to other work.
 
 Speaker A [00:21:41]:
 And most likely they're going to be looking for sedentary work, which is basically sitting six out of eight hours, standing basically two to four out of eight, lifting no more than 10 pounds with bilateral manual dexterity and meeting pace and production requirements. So what they're doing is they're looking at their doctor's opinions about restrictions, limitations, determining whether there are any transferable skills and if not, what other occupations you might be able to do, and if there are transferable skills, then what skills you could take to other occupations. They're then going to try to see if they can come up with a match and that match will be the basis of the denial. And they'll say, well, you know, we believe that you're capable of engaging in any occupation based on the restrictions or limitations of our doctor, liar for hire and our liar for hire Ve who has opined that you're capable of doing the following occupations, again based on the terms of the policy or the plan as any occupation is defined. And that is going to lead to a claims denial or termination. Now what's important as a starter here is medical documentation. You have to give your doctor a full picture of your limitations, including your symptoms, the frequency of your symptoms, how those symptoms impact your function, the pain level you have, your response to treatment, side effects of medication and by body system problems that you have, visual limitations such as blurry vision, light sensitivity, respiratory problems such as shortness of breath, having to use oxygen and other body system involvements. Ultimately, your doctor needs to understand how these body system symptoms impact your ability to walk, sit, stand, lift, carry and bend.
 
 Speaker A [00:23:41]:
 I think the medical records need to tell a story, the story of your day to day challenges and and a history of your symptoms and functionality with you giving that interval history to the doctor between you know what your symptoms were between visits. I will tell you that vague records harm your credibility and the success of your claim. That's not all. Let's talk about the residual functional capacity form. I've told you in the earlier segments that the carrier is going to use their own attending physician statement forms that purposely don't answer asked rather the right questions because they don't want the right answers. Social Security lawyers such as myself have prepared detailed RFC forms such as pulmonary forms, visual impairment forms, gastroenterological forms, forms regarding skin impairment. We use those in our practice as a supplement to the attending physician statement form. And by the way, generally we're also handling the Social Security disability claim.
 
 Speaker A [00:24:41]:
 But the RFC form can help document, for example, how far you can walk, how long you can sit, do you need to alternate sitting and standing? Do you have problems with the need to elevate your legs or to avoid sunlight, or the need to take frequent breaks? It can address visual and respiratory Restrictions, it can discuss the impact that your symptoms have on your your ability to concentrate or maintain pace in production, or absenteeism. All of these factors are really not just factors, but they're details that paint a true picture of your limitations and make it harder for the insurance company to deny your claim on a on the basis of incomplete evidence. Now, I find that it's important that you have a disability attorney that helps you with the SJS claim, particularly at the neoccupation stage. Many times what happens is that the carriers or plans will argue that you recovered enough to perform other jobs in the national economy, but they're going to overlook critical complications like the ongoing visual impairment that prevents computer or screen based work, respiratory limitations that make even light physical activity unsafe and difficult to perform, chronic fatigue, pain and cognitive difficulties that interfere with consistent job performance. They'll also potentially address the skin impairment which can impact bilateral manual dexterity, impact your ability to sit, impact the use of your feet, impact the use of your upper arms, the kinds of things that would make it difficult to do a sedentary job where you're sitting down all day. If you find yourself in a situation where your claim has been denied, I want you to understand that under ERISA you'll only have 180 days in which to file an appeal. And the appeal is the trial of the case. What happens here is you should obviously be represented, but the representative is going to get the claims file and take it apart.
 
 Speaker A [00:26:50]:
 Now, claims files can be 300 pages to a couple thousand pages. In our practice, we basically analyze those medical records. We're looking for those liar for hire opinions that the carrier got to justify the claims denial because we want to attack those. We also want to see what the policy or plan has to say. Because here we are starting to bill a comprehensive appeal, a detailed appeal that's filled with medical evidence, legal arguments, expert reports, statements from you, probably photographs. We also want to get residual functional capacity forms from your doctors and if possible inappropriate, get a functional capacity evaluation that will measure and establish why you can't even do a sedentary job or the dumb jobs and that the liar for hire, vocational evaluator for the carrier said you could do. And then lastly, we want to tie this up together with a vocational analysis. They had a vocational quote unquote justification for denying your claim on the basis that you could do any occupation.
 
 Speaker A [00:28:00]:
 Well, we need to rebut that so many times. We will hire a vocational expert to address the occupations that the VE says that you could allegedly perform and show that your real world limitations prevent substantial employment. You have to understand that there's deadline management here because you only have 180 days in which to file an appeal and if you don't, you will have most likely lost your rights to file a suit because you haven't exhausted your remedies. It's really crucial that that appeal be filed timely and that that be monitored because under the ERISA Statute, Carrier has two 45 days in which to decide the case. If they don't give a good reason after the first 45 days a lawsuit can be filed and filed quickly that will impact the standard of review that the court uses. The standard of review is really crucial in an ERISA case and two standards of reviews are what's called the arbitrary and capricious, which is not arbitrary and not capricious. But it is a handcuff on the federal judge who has to have very strong circuit specific reasons for overturning the claim denial. It's not just enough that they disagree with it, they have to.
 
 Speaker A [00:29:17]:
 The judges have to meet certain legal standards and criteria for deciding that they are not going to defer to the denial. The other review is called de novo review and that's the kind of review you want where the judge is not bound by the carrier's denial or a termination. They get to apply an independent opinion. However, you need to understand that the judge is only going to review what's in that carrier file and the appeal is really a crucial part of the process in getting you the long term disability benefits you deserve for sjs. You can see that SJS is a complicated disease with multi system involvement and carriers don't understand it. Claims are routinely denied and you can prevent that by following the tips that I have given you in this podcast. So I hope you've enjoyed this important conversation about sjs and it's more than just a short term medical emergency. It leads to lasting system involvement that impacts your vision, your breathing, your mobility, your ability to work.
 
 Speaker A [00:30:31]:
 And carriers generally don't see the whole picture. They're going to minimize your symptoms, misclassify your job duties, wrongfully assume that you've recovered and that's not what happens. So I thank you for tuning in to today's episode of Winning Isn't Easy. If you found this episode helpful, please take a moment to like our page, leave a review, share it with your family or friends, and subscribe to this podcast. Join us next week for another insightful discussion. An episode of Winning Isn't Easy. Thanks for listening.