Fighting for Fairness: Navigating ERISA Disability Claims for Rare Disorders

Welcome to Season 6, Episode 7 of Winning Isn't Easy. In this episode, we'll dive into Fighting for Fairness: Navigating ERISA Disability Claims for Rare Disorders.

Securing ERISA Long-Term Disability benefits with a rare medical condition often comes down to a hidden challenge: insurer misunderstanding. Disability carriers don’t just look at the diagnosis - they evaluate how clearly symptoms are documented, how doctors describe functional limits, and whether medical records explain why you can’t work. When a condition is rare or complex, gaps in understanding can quietly lead to delays or denials. In this episode, we break down how ERISA insurers evaluate rare disorders through three examples: Tracheobronchomalacia (TBM), Ehlers-Danlos Syndrome, and DiGeorge Syndrome. By the end, you’ll understand why success isn’t just about having a rare diagnosis - it’s about translating complex medical evidence into clear proof of disability under ERISA.

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

One - Getting Your ERISA Disability Insurance Benefits for Tracheobronchomalacia

Two - Getting Your ERISA Disability Benefits for Ehlers-Danlos Syndrome

Three - Getting Your ERISA Long-Term Disability Benefits for DiGeorge Syndrome

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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Need help with your Long-Term Disability or ERISA claim? Have questions? Please feel welcome to reach out to use for a FREE consultation. Just mention you listened to our podcast.

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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

Nancy Cavey [00:00:00]:
 Hey, I'm Nancy Cavey, national risk 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 isn't legal advice. The Florida Bar Association says I've got to tell you this, but now that I've said it, Nothing will ever prevent me from giving you an easy-to-understand overview of the disability insurance world, the games that disability carriers play, and what you need to know to get the disability benefits you deserve. So off we go with today's episode. Now, I'm going to be talking about rare medical conditions and understanding how rare medical conditions fit into the ERISA disability framework can be the difference between securing your long-term disability benefits that you paid for and being unfairly denied. Now, most disability carriers have difficulty understanding common medical conditions, but I think that those who suffer from rare disorders have a tougher road to hoe.
 
 Nancy Cavey [00:01:06]:
 It's the lack of understanding that I think often works against claimants. The disability carrier or the plan may not grasp the day-to-day impact of these conditions or the complex medical documentation required to prove disability under an ERISA plan, and as a result, They're just not looking at your diagnosis. What they're doing is they're examining your medical records, your treatment response, your doctor's statement, your ability to function at work and at home. If your documentation doesn't clearly explain your symptoms and how those symptoms limit your capacity to perform your own occupation or even any occupation, your claim can be delayed or denied or even terminated if you're on claim. I think that for individuals who have rare or multisystem disorders, this process can be even harder. These conditions often involve fluctuating symptoms, specialist care, and functional limitations that aren't easily captured in standard disability insurance forms. That's why I think your strategy, your medical evidence, and your doctor's support are crucial. Now, I'm specifically going to talk about 3 different medical conditions today.
 
 Nancy Cavey [00:02:13]:
 And one of them isn't so quite rare, but it's a complicated condition, and that's Ehlers-Danlos syndrome. But I'm going to talk about 3 things. I'm gonna talk about tracheobronchomalacia, also known as TBM, which is a rare airway disorder that can make even basic breathing a struggle. Then I'm gonna talk about Ehlers-Danlos syndrome, which is a connective tissue disorder that will cause pain, fatigue, and instability throughout the body with multiple subluxations or dislocations. And finally, I'm gonna talk about DiGeorge syndrome, which is a genetic condition that has wide-ranging impacts on the heart, immune system, and more, and how its complexity can make proving disability very difficult. So by the end of this episode, I want you to understand that winning your ERISA disability claim is not just about a diagnosis. It's about presenting your medical evidence clearly and coordinating with your doctors and understanding how disability insurance carriers or plans evaluate your claim. Now, I have experience with every one of these diseases, so I want to try to give you my unique personal experience in dealing with claimants who have these medical conditions.
 
 Nancy Cavey [00:03:23]:
 Number 1, I'm going to talk about getting your ERISA disability benefits for TBM. Next, I want to talk about getting your disability benefits for Ehlers-Danlos Syndrome. And lastly, I want to talk about getting your ERISA long-term disability benefits for DeGeorge syndrome. Now, as I've said, every one of these diseases may be rare or not well understood by physicians or not well understood by disability carriers or plans, but they do have things in common. So even if you don't have one of these diseases, but have a disease that involves a medical condition that can wax or wane, can be difficult to prove, can have varying symptoms, this podcast is also for you. So it might be that you have MS, PD, chronic fatigue, or any other disease that has these types of varying fluctuations. So let's take a break for a moment before we get into this episode, because remember, there's something for everyone in this episode. Got it? Let's take a break.
 
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 Nancy Cavey [00:04:56]:
 Getting your ERISA disability insurance benefits for Trekkie Bronco Malaysia. Now, let's be straight, disability carriers don't often understand this disease or how disabling the condition can be. You've got to fight to get your benefits, and we want to make sure that the disability carrier plan keeps the promises they made to you when you enrolled in the plan or bought this particular policy. Let's talk about what TBM is. It's a medical condition in which your trachea, which is your windpipe, and your bronchi, which are the tubes that lead from your trachea to your lungs, are so weak that they collapse. The trachea can close when you take a breath or cough, and obviously that can make it difficult to breathe. It can cause wheezing or a barking dry cough. Some people are born with TBM, but it can also develop later in life.
 
 Nancy Cavey [00:05:44]:
 It can be the result of asthma, bronchitis, chronic obstructive pulmonary disease, goiters, or obesity. It can also be the result of medical treatments such as a prolonged tracheotomy or prolonged use of inhaled corticosteroids, or extended intubation or ventilation. It can also be the result of exposure to toxins such as secondhand smoke or toxic gases. And so you need to understand that this can be something you're born with, but it can be an acquired condition. And again, that's something that disability carriers don't necessarily understand. So are you entitled to disability benefits for a TBA? Well, the answer, of course, is assuming you have a disability insurance policy or plan, what you should be doing is to first read a copy of your disability policy or plan beginning to end, because you need to understand what it is you have to prove in terms of the definition of your own occupation, any occupation, the definition of disability, and what is the nature of proof that the disability carrier or plan will require. Now, I assure you, when you apply for your benefits, one of the first things they're going to do is to get your medical records. They're going to have them reviewed by by nurses or in-house medical reviewers.
 
 Nancy Cavey [00:06:56]:
 And by the way, these reviewers may not necessarily have any experience with this disease, but what they're going to try to do is determine your diagnosis, determine what treatment you received, your response to the treatment, evaluate your restrictions and limitations, and understand why you can't do your own occupation or any occupation. And of course, ultimately, the disability claims examiner is going to be looking at those policy terms to look to see whether there is a clause in the disability insurance policy or plan that they can use to limit the payment of your benefits to just 2 years, and that's called a subjective medical condition limitation. Remember I told you one of the first things you need to do before you stop work is to look at that disability plan or policy? That's why you need to do that. After the— as the disability carrier's reviewers are looking at your medical evidence, one of the first things they're going to be looking for is objective medical evidence of the diagnosis. They're going to be looking for pulmonary function tests, CT scans, and they're also gonna be looking for a course of treatment that's consistent with the nature, frequency, duration, and intensity of your symptoms. Otherwise, you know, they might claim that you don't meet the plan's definition of disability or medical treatment requirements. And guess what they're also going to be looking for? They're gonna be reviewing your medical records to determine your residual functional capacity, what you can still do despite your physical limitations. Now, TBM may cause difficulty breathing with everyday activities like walking, difficulty breathing even without exertion, that bark, dry, harsh cough, wheezing, temporary loss of consciousness during coughing or wheezing, and obstructive sleep apnea.
 
 Nancy Cavey [00:08:41]:
 Now, if your TBM is related to asthma, bronchitis, obesity, or COPD, you probably also have functional issues from those other conditions. So it's crucial that your medical records are documenting your symptoms, your functionality, and how those symptoms impact your ability to work, but that there's objective testing that addresses perhaps the underlying cause of the TBM. Now, I will also tell you that the medical opinion of your doctor can make or break your case. A simple letter from your doctor saying that you're disabled or unable to work isn't going to cut it. What is important here is your doctor's support in completing carrier forms called attending physicians APS forms. If you've looked at an APS form, you will see that they don't ask the right questions, and as a result, I supplement them in the cases that I'm involved in. As a Social Security and a risk of disability attorney, I'm really familiar with and work closely with different types of residual functional capacity forms. Now, these forms will document the objective basis of the diagnosis and the objective basis of restrictions and limitations.
 
 Nancy Cavey [00:09:47]:
 Like problems with lifting, pushing, pulling, sitting, standing, walking, bending, stooping, kneeling, squatting, the need for breaks, the need for naps, problems with concentration and pace, and even problems with absenteeism. What I want the doctor to do is to complete that attending physician statement form that the carrier wants, but I wanna pick the right Social Security residual functional capacity form as a supplement, because it asks the right questions. So we have all sorts of different types of residual functional capacity forms. Asthma, COPD, obesity, and other relevant forms that we would want the doctor to complete as a supplement to the APS. We don't want to leave any of this to chance, right? So let's take a break before I move on to the next topic of getting your benefits for Ehlers-Danlos Syndrome. Welcome back to Winning Isn't Easy. Getting your Arista disability benefits for Ehlers-Danlos Syndrome. Ehlers-Danlos Syndrome, EDS, is another somewhat rare but often misunderstood condition that can make getting your Arista disability benefits and even Social Security benefits challenging.
 
 Nancy Cavey [00:11:05]:
 Many disability carriers fail to grasp how the pain, fatigue, and instability associated with EDS can prevent someone from maintaining steady employment, especially in physically demanding jobs. Even jobs that require sitting, but the extensive use of your upper extremities, your shoulders, your elbows, your hands, it can be difficult, if not impossible, to perform your own work and any other work. But the proof is the key to getting your benefits. So what is Ehlers-Danlos Syndrome? Well, it's a group of inherited connective tissue disorders that affect the skin, joint, and blood vessel walls. The collagen that provides strength and elasticity to tissues is weakened, resulting in joint hypermobility, chronic pain, dislocations, easy bruising, and sometimes vascular complications. Now, I have to tell you that I have had many Ehlers-Danlos cases where the person has inherited it from their family members. But I will also tell you, post-COVID, we're seeing a lot of cases involving Ehlers-Danlos syndrome as a complication, if you will, of Long COVID. And as a result, I think the public, including the risk and disability carriers and Social Security judges, are becoming more familiar with what Ehlers-Danlos syndrome is.
 
 Nancy Cavey [00:12:23]:
 What they don't understand, however, is that there are several types of EDS. The most common type is the hypermobile EDS, and that can cause frequent joint dislocations or sprains, severe chronic musculoskeletal pain, extreme fatigue, poor wound healing, and autonomic dysfunction. For example, dizziness or fainting when standing. And again, I see post-COVID, this combination of people who have had COVID who are having Ehlers-Danlos syndrome symptoms, ultimately diagnosed with EDS, but they also have POTS, which is an autonomic dysfunction disorder. Again, we're seeing more of these cases, which I think is good in that doctors are taking these conditions more seriously. They're getting more educated about them, and so are the disability carriers. But how do you go about proving an ERISA disability claim if you've got Ehlers-Danlos syndrome? It's crucial that your medical documentation is establishing the EDS. So you might want to have objective testing such as genetic testing or even specialist evaluations confirming your diagnosis.
 
 Nancy Cavey [00:13:30]:
 You want to make sure you're giving a really good history of family members who might have EDS and how you may have noticed EDS growing up. I tried a Social Security disability case this week involving Ehlers-Danlos, and the records were regarding the family history. But what was interesting is that the judge asked questions of my client about at what point growing up did she notice this joint laxity? And she said, well, I've always had this problem. And to me, it's sort of normal. And even growing up, you know, I could reach my toes without even having to bend my knees to get to my toes. And then the judge asked her about her skin and how it looked like. And she said, you know, my skin is milky and people always comment about that. I tell that story simply because judges are becoming more cognizant of what the symptoms are.
 
 Nancy Cavey [00:14:21]:
 But they're also kind of testing, if you will, the longitudinal history of the disease and its progression. Now, again, in addition to this good history and the specialist evaluation, I think physical therapy assessments demonstrating instability or limited range of motion is really important. In many of the cases that I am involved with, my clients have recurrent subluxations or dislocations. I know certainly if you are having a physical therapy assessment, and you're demonstrating instability or limited range of motion or even subluxation or dislocation, that will really help prove up the case. Now, they're also gonna be looking for notes from rheumatologists or pain management specialists dealing with chronic symptoms. I have many clients who will just roll over in bed and their shoulders will dislocate, or they'll have rib dislocations or hip dislocations, knee dislocations, finger dislocations. Or subluxations. And so I spend a lot of time trying to have them give a good history about the location of the dislocation or the subluxation, the frequency, the duration, the intensity, including the pain, and what they have to do to either address the subluxation or even have the dislocation reduced, either by a family member or even by medical providers.
 
 Nancy Cavey [00:15:44]:
 Because symptoms fluctuate, I find that disability carriers and even Social Security judges who can minimize their severity. So that's why I think that daily symptom journal, pain log, and functional assessments can help. So remember, location, duration, intensity, frequency. Those are the key, in my view, in what you should be documenting. And as appropriate, take photos. Now again, at the end of the day, the disability carrier is going to look at your residual functional capacity. What you can do despite your limitations. A supportive medical opinion based on a good medical history that you're given, a good thorough physical examination, a good documentation of the results of that physical exam findings and the support and the treatment you've got, I think will go a long way to helping address the objective basis, not only of the diagnosis, but the objective basis of the restrictions and limitations.
 
 Nancy Cavey [00:16:39]:
 Don't forget fatigue. Don't forget pain. Don't forget some of the other complications, if you will, of Ehlers-Danlos. Those should be well documented and as necessary in a pain diary or any other kind of diary that will support the longitudinal nature and frequency, duration, and intensity of your symptoms. This can be the deciding factor in whether your claim is approved and whether you stay on claim. Got it. Let's take a break.
 
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 Nancy Cavey [00:17:57]:
 Welcome back to Winning Isn't Easy. Getting your long-term disability benefits for DeGeorge syndrome. Now I will tell you that getting benefits for DeGeorge syndrome for your disability insurance policy or plan benefits can be tough. It can be tough to get Social Security benefits for this condition. Again, this is one of these medical conditions where disability carriers or plans just don't understand the multiple system involvement of DeGeorge syndrome. It involves cardiac issues, orthopedic issues, visual issues, hearing issues. It goes across, quite frankly, body systems and it includes issues with immunity. I think it is really important that when you are trying to win one of these cases or stay on claim, that you take the approach of discussing with your doctor and documenting your system involvement.
 
 Nancy Cavey [00:18:51]:
 It might be cardiac symptoms, it might be orthopedic, visual, whatever it is. You want to take, I think, a systems-based approach to documenting your symptoms and functionality. I think that is really, really key. So what is DiGeorge syndrome? It's known as 22q11.2 deletion syndrome. It's caused by a missing small section of chromosome 22, and as a result, that leads to poor development of various body systems such as cardiac problems, lowered immunity, hearing issues, visual issues, spinal problems, and autoimmune disorders. Now, again, the question becomes, are you entitled to these benefits if you have a disability insurance policy or plan? Much like the other medical conditions I've talked about, I think the starting point is to understand the terms of your disability insurance policy or plan. Many disability policy or plans will have language that sets forth the objective nature of the medical proof that this particular policy or plan requires. Or on the other hand, they might have what's called a subjective medical condition limitation that will limit the payment of benefits to just 2 years, and they'll list symptoms.
 
 Nancy Cavey [00:20:01]:
 So you need to understand the range of, well, what it is I have to prove, to, geez, if I have these symptoms, my benefits might be limited to just 2 years. That should help frame the story that you are telling, because the disability carrier plan is going to review your medical records They're going to try to determine the diagnosis. They're going to be looking for an objective basis of the diagnosis of DiGeorge syndrome and an objective basis of the systems that are involved. So if you have cardiological issues, for example, the disability carrier is most likely going to be looking for objective evidence of that cardiac diagnosis. In addition to the global diagnosis of DiGeorge syndrome, they're also going to be looking at your treatment history and your response to that treatment. Were there multiple treatments that were tried and failed? What was your response to that treatment? Did you respond to medication or not? And so that needs to be documented clearly in your medical records. Ultimately, at the end of the day, the disability carrier plan is gonna look at these records and say, hmm, well, what do we think this person's functional restrictions and limitations are? Well, they may take into consideration your doctor's opinion, which I think is crucial Ultimately, they're going to be making the determination as to what they think your functional restrictions and limitations are. And of course, they're always looking for a reason to limit benefits, so they'll be looking for whether your condition falls under the subjective limitation in your policy plan, if there is one.
 
 Nancy Cavey [00:21:29]:
 Remember, really, proof is crucial because the DeGeorge syndrome is crossing multiple body systems. Again, I think you need to document each body system involvement. So it might be the heart, it might be the spine, it might be visual issues, it might be learning disability or behavioral disorders. But we want to also have your medical records discuss the combined impact of these problems, not just by the system, but by the combined impacts. Because obviously you're a person, a total person. We're not gonna just take a little slice of your medical conditions We want to look at each individually and then collectively. Let me give you an example. You might have heart issues because of DiGeorge syndrome.
 
 Nancy Cavey [00:22:17]:
 We want to have documentation of those cardiovascular issues. But you also might have shortness of breath, which means there's pulmonary involvement. So the carrier is going to be looking for cardiac testing, pulmonary testing. They're going to be looking for symptoms that are consistent with the nature of those particular problems. They're gonna be looking for treatment modalities based on both of those types of body system involvements. They're going to be looking for your response to the treatment, and then of course, your functionality. Ideally, they will look at those individually and then collectively. I've seen combinations of poor immune functioning, rheumatoid arthritis, Graves' disease, spinal issues, visual issues.
 
 Nancy Cavey [00:23:00]:
 There's just no one presentation. So we want to take our strategic approach based on you as an individual. Again, that is a particular problem because disability carriers tend to lump people in one category. And because your manifestation of your symptoms are unique to you, I think that's how you got to go about presenting your case. Here's the DeGeorge syndrome, if you will. And under that umbrella, you have these system involvements. Under each system involvement, we're looking for any complications of that system involvement. We're looking for the objective basis of the diagnosis, test results, objective basis of restrictions and limitations across this whole spectrum of your symptoms and functionality.
 
 Nancy Cavey [00:23:47]:
 But then again, we want your physician to be addressing the totality of your circumstances and doing that so across various Residual Functional Capacity forms. Now, why do I use the word residual functional capacity form? It's because disability carriers or plans are going to have you get your doctor to fill out attending physician statement forms that don't ask the right questions. I want to pick from my library, if you will, of Social Security residual functional capacity forms the right residual functional capacity form that's going to address the system involvement. So you might have cardiac issues, you might have immunological issues, you might have visual issues. I'm going to give you, and your representative should be giving you, the appropriate Social Security residual functional capacity forms as supplement to the APS form. So I would give you an immunological one, a cardiac one, a visual one, because again, that helps the doctor and you focus on the correct symptoms and issues with functionality. Got it? Well, that's a wrap for today's episode of Winning Isn't Easy. Thank you for tuning in.
 
 Nancy Cavey [00:24:54]:
 And if you found this episode helpful, please take a moment to like our page, leave a review, and share it with your friends and family. Now, please join us next week for another insightful discussion of Winning Isn't Easy. The things that we talked about today cross over many medical conditions. Just because you may not have had these medical conditions doesn't mean that there wasn't something that you could learn and apply to your case. Got it? Thanks for listening.