S8E12: MS disability benefits in the US: when to apply and how to prepare

Nancy Cavey (00:00)

So whatever your symptoms might be, I think you should use that piece of paper, list every symptom and document the location, duration, frequency, intensity, and give an example of functionality. I suggest that you give it to your doctor and ask that they make it part of the record. Now, some will cooperate, some won’t. But you should keep a copy of that because I will tell you I find it to be very helpful

 

Vickie Hadge (01:06)

Welcome to Living Well with MS from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity. My name is Vickie Hadge and I’m so looking forward to speaking with today’s guest, Nancy Cavey.

Nancy is a United States lawyer that specializes in helping people navigate the U.S. Social Security system. She has spent her career working tirelessly on the behalf of people who have not received fair treatment or promised benefits. She’s a member of the National Organization of Social Security Claims representatives, the American Association for Justice, and the Florida Bar. Welcome Nancy.

 

Nancy Cavey (01:47)

Well, thank you for having me, Vickie. I’m excited about explaining the social security disability process to the listeners.

 

Vickie Hadge (01:53)

I’m so glad you’re here because this is a topic that’s really important to people living with MS or disabilities or any other kind of problem with their health. So first, can you introduce yourself and the work that you’re doing and your interest in helping people apply for benefits?

 

Nancy Cavey (02:11)

Sure. I am a Social Security Disability attorney who practices across the United States. And I became a Social Security Disability attorney in part because of my dad.  When I was growing up, he was diagnosed with leukemia when I was in junior high school. And I watched him over the next four years make that difficult decision to stop work and apply for his Social Security Disability benefits. So I’ve been in the household of a breadwinner who has had to stop work and apply for benefits. And he was a John Wayne type of guy. So it was a very hard decision for him to make over those years. So I bring to my practice that experience as a person who has grown up with a parent who is disabled and then watched him deal with the claims process.

 

Vickie Hadge (02:58)

Oh, that’s so important to have that personal connection and you get it. You’ve been there and you’ve seen the process firsthand. MS affects people so differently. Often it’s an invisible disease and not everybody with a diagnosis considers themselves disabled. At what point should people consider applying for disability benefits?

 

Nancy Cavey (03:20)

That’s a difficult question given the nature of  MS. It waxes, it wanes, it can have flares, it can progress in an uneven pattern. There is no necessarily right answer, but I would say when you’re beginning to have problems at work, walking, balance, coordination, the use of a computer, concentration, making mistakes, I think that’s the time that you should think about consulting with an experienced social security disability attorney because there are many things I think you need to do before you make that difficult decision to stop work and apply for benefits.

 

Vickie Hadge (03:55)

Thanks so much. We really do need to think about it ahead of time before we get to that decision-making day. Are there steps that people can take or documents that they can gather ahead of time that would help them apply in the future, even if they’re not ready to apply right now?

 

Nancy Cavey (04:01)

Absolutely. I think one of the most important things that a person can do is to give a very good interval history. And I have a formula that I tell my clients that I want them to use. Ultimately, the Social Security Administration is going to be looking longitudinally across the progression of the disease. Now, they’ll only look back one year from the date that you claim you’re disabled. But I think medical records tell a story, not only the diagnosis and progression, but more importantly, the symptoms and functionality. So here’s the formula that I suggest people use. Symptoms, so write down on a piece of paper, on the left-hand piece of paper, what the symptoms are, one, two, three, four, five. Then I want you to think about the location of the symptoms, the duration of the symptoms, how often you have them and how they impact your ability to function. So if I might, I can give a quick example. Let’s say that one of the many symptoms you have is the MS shrug. And it happens to be, let’s say, on the right side of your body and you’re right-handed. So what are the symptoms of the shrug? Well, it’s that tightening, binding sensation that impairs your ability potentially to use your arm in front of you and to the side. So the location is the rib area. It may be 24-7. You might have flares of it. But functionally, you have difficulty, for example, reaching in front of you to get something off of a shelf or to do things like keyboarding or to reach overhead or to go to the side. So whatever your symptoms might be, I think you should use that piece of paper list every symptom and document the location, duration, frequency, intensity, and give an example of functionality. I suggest that you give it to your doctor and ask that they make it part of the record. Now, some will cooperate, some won’t. But you should keep a copy of that because I will tell you I find it to be very helpful when I am assisting my clients in applying for Social Security Disability Benefits. The story that that document will tell will go a long way in my view to helping you get your social security disability benefits.

 

Vickie Hadge (06:18)

That’s such a great idea, having that story and keeping a list of the symptoms and how they affect us and how frequently. Just to follow up on that, would you recommend that we keep a symptom diary?

 

Nancy Cavey (06:30)

You know, sometimes I like them, sometimes I don’t like them. If you might have migraines, I think that a migraine pain diary is helpful because most neurologists who treat migraines want to see it. But I like the way that I sort of do it because we are breaking down by symptom as opposed to like the body-wide function. I want Social Security and if we have to go to a hearing the judge to understand each one of the symptoms, the nuances of each one of the symptoms, because everybody experiences them differently. And as the disease progresses, their experience changes. So to me, this sort of Excel spreadsheet type approach is a much cleaner way to see the progression of the symptoms and the impact of those symptoms, as opposed to a diary where, you know, I will tell you, Social Security’s not going to read a diary. I probably won’t read the diary. I’ll have somebody summarize it for me. But I’ll take a look at that symptom and functionality sheet in a heartbeat. That’s so much easier for me to read and to understand and internalize your specific symptoms, your unique experience of the disease.

 

Vickie Hadge (07:26)

Thank you so much for that. We have listeners who are worldwide, but you practice in the US. How is MS evaluated in social security and long-term disability claims?

 

Nancy Cavey (07:45)

Well, I know that there are other countries who do have similar social security systems. I am familiar with Canada. But in the United States, the first thing you must be is insured. You generally will have to have worked 20 out of the last 40 quarters. After that, social security is going to use a five-step sequential evaluation test, and they will use it at every stage of a claim. First question, have you been out of work for a year? Do you have a medical condition that would keep you out of work for a year?

Now, if you’re working, you have to keep your wages under a certain number. It’s called SGA, and it changes every year. If you’re a dime over whatever that SGA number is, Social Security will issue what’s called a technical denial because you don’t meet the monetary thresholds. So number one, work status. Number two, is this condition temporary or permanent in nature? So is it like a sprain or a strain? Well, we know MS is permanent and unfortunately progressive.

Step three is whether a person meets what’s called a medical listing. We all went to high school biology and in biology we learned about the body in terms of body systems. We learned about the cardiovascular system, the pulmonary system and the neurological system. So social security is going to take out at step three, the book of impairments or the blue book and look at what body systems are involved. So you might have MS in something else but they’ll probably start out with the MS listing. Now that is section 11.09 of the listings. And if you meet that listing, benefits are automatically awarded. But as we know, doctors didn’t take a class in medical school to learn how to write a report for social security purposes. So what we see is cases are decided at step four and five. This is medical and vocational in nature. What do I mean by that?

At step four, the issue is, can you go back to the lightest and simplest job you held in the five years before this case is decided? And at step five, which is where the majority of these cases are, if you’re under 50, it’s what I call the crazy cockamamie not real world test. That test is, is there other work in the mythical hypothetical not real world U.S. national economy you wouldn’t want to do, does not pay a living wage, if you were age, your education skills, and your restrictions and limitations. And the alternative if you’re over 50 is something called the GRIDs. Now you heard me use these words, restrictions and limitations. The way that we social security disability attorneys get at this is we’ve created some forms called residual functional capacity forms. And we have those for MS and probably 60 other medical conditions. So when I’m talking to a prospective client, I’m telling them, look, I hope your doctor is willing to help you by filling out this form because it will help determine if you meet a listing, but more importantly, will quantify your restrictions in terms of balance, coordination, sitting, standing, walking, stooping, bilateral manual dexterity, your ability to concentrate or meet pace and production requirements and attendance. Your records don’t address those things, but that RFC form in conjunction with your story of your symptoms and functionality are key in my view to getting your benefits.

 

Vickie Hadge (10:52)

Wow, seems complicated.

 

Nancy Cavey (10:54)

Well, I just reduced it to five steps pretty simply. When I talk to prospective clients, I’m talking to them individually about their particular symptoms and functionality. And that’s why I think it’s important that you be thinking of that as you’re making the decision to apply for benefits. In instance, at step five, the question is, why can’t you do a silly job like being a surveillance system monitor, sorting nuts and bolts, or addressing envelopes?

 

All those jobs are sedentary, require a degree of coordination, if you will, meet pace and production requirements. So if you’re beginning to have problems doing those types of things, to me, that’s the key, if you will, to say, hey, it’s time for me to talk to a social security display attorney before I stop work and apply for benefits.

 

Vickie Hadge (11:40)

Excellent, thank you for that. No matter where we are, fatigue, cognitive issues, and fluctuating MS symptoms are really difficult to quantify. How can people best prove them in an application or in a legal case?

 

Nancy Cavey (11:55)

Well, that’s a great question. I will tell you, psychological problems generally do not win a case. But of course, I represent a lot of folks who have fibromyalgia, ME-CFS, MS, PD. Fatigue and cognitive issues are always a problem. So let’s talk about the fatigue. I always want my clients to talk about rest. How much sleep do you get in the course of the night? How restful is it? Are you up? Are you down? Do you have to take naps in the course of the day?

And then how does that fatigue impact your ability to function in terms of concentration? In terms of concentration, I like to ask my clients, do you use your phone? Do you have reminders on your phone? Do you make lists? Does somebody help you with your pill container? Give me some examples of how you may have left a boiling pot of water with an egg on it and it exploded. And so keeping a log of those types of things, that symptoms and functionality sheet, I think is really crucial. Now, if you’re having problems at work and you’re being written up for it, I like to try to get from the HR department the personnel records documenting the cognitive problems so that it’s just not coming from my client. It’s coming from a third party that has no skin in the game, if you will.

 

Vickie Hadge (13:09)

It sounds like documentation is really important, whether it’s us documenting our symptoms and how they’re affecting us, our doctors helping with documentation, HR with documentation. It’s very important to have all that. Many people with MS would like to work, but due to our symptoms, we’re unable to work full time. How can working even at a part-time capacity affect disability claims for people?

 

Nancy Cavey (13:31)

Well, as I said, if you’re in the application process and you’re earning more than SGA, you’re automatically disqualified. Now, that doesn’t mean to say you can’t work, you just have to keep it under that number. But ultimately, of course, the question is going to be, well, why couldn’t you work full time? So as long as you’re prepared to answer that, that’s fine. Now, once you get Social Security benefits, Social Security does have a ticket to work program where you register. It’s very complicated to explain, but you can work and keep your Social Security benefits for a period of time. when you are awarded Social Security disability benefits, it is not a lifetime sentence of unemployment.

 

Vickie Hadge (14:07)

Excellent. I think a lot of us, we may be able to manage our symptoms better in the future and want to do part-time work and feel like we’re part of something bigger and not just taking Social Security. Thank you for that.

 

Overcoming MS (14:21)

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Vickie Hadge (14:38)

It’s very common for an initial benefits claim to be denied. What can applicants expect after a denial? Do you recommend everybody appeal if they’re initially denied?

 

Nancy Cavey (14:48)

So the answer is yes. no doubt. So let me explain the claims process. The initial application is reviewed by a local state agency called Disability Determination Services. And unfortunately, because of the budget cuts here in the United States, Social Security has lost about a quarter of its staff. So that means they’re overworked, underpaid, and in many locations there is a hiring freeze. So it’s taking a year to a year and a half just to get a claims examiner assigned to a claim. So I want my clients to use this time wisely. Continue to get medical treatment, be compliant, give that good medical history, get that residual functional capacity form. The idea here is that when that claims examiner finally gets the claim, they have everything they need to understand why you meet the five-step sequential evaluation test. If the claim is denied, you’ve got 60 days in which to file an appeal.

So absolutely yes, you want to file an appeal because otherwise if you change your mind, you get back in line where it’s going to take another year to a year and a half. Now, we’ve all met people who make it up on the wrong side of the bed. And so when you file that request for reconsideration, a new claims examiner is assigned. But if that one gets up on the wrong side of the bed and denies the claim, you’ll have 60 days in which to file an appeal. And yes, you should file an appeal.

If that claim gets denied, then we have 60 days to file a request for a hearing that gets us in front of a Social Security judge. And I think most of the Social Security judges are particularly sympathetic to MS cases, but that isn’t to say every case is going to be a winner. So that’s the claims process. If you lose in front of judge, we can go to the appeals council, and potentially we can go to federal court. I’m not the kind of lawyer who’s going to give up, I’m going to fight for my clients to get the benefits that I believe that they deserve.

 

Vickie Hadge (16:34)

So good to know that there is something we can do even if we get denied initially and we don’t have to start back at the beginning of the queue and wait another year. That’s really good to know. Excellent. Depression is now considered a primary symptom of MS and anxiety is incredibly common. Given the dynamic nature of the condition, what’s the role of mental health conditions alongside MS and disability claims?

 

Nancy Cavey (16:43)

I represent a lot of veterans who have post-traumatic stress disorder, and I will tell you, even in the most extreme cases, Social Security will minimize the psychological impact to saying that a person can do simple, routine, repetitive tasks with no contact with the public and only occasional contact with the coworkers and supervisors. Those two jobs I told you about, addressing envelopes and sorting nuts and bolts, meet that criteria.

Now that isn’t to say it isn’t a factor, but I don’t want people to think that they are going to get their benefits because of depression or anxiety. Again, on this chart, I suggest people keep one page for depression. What are the symptoms? You have lack of motivation, isolation, irritability, just go down the laundry list. And then talk about how often you have it, how long it lasts, how it impacts your ability to function.

If you’re anxious, what is triggering the anxiety? And how many times does that anxiety become a panic attack? And what is it like to have a panic attack? I think that it’s obviously crucial that that’s documented, but that you’re getting treatment by a provider, because we also have psychological residual functional capacity forms. And so I want that also as part of representing someone so that I can add, if I have to at a hearing, part of the hypothetical being, I want you to assume that this person isolates themselves, does not participate in family activities, avoids contact with the public, so that I can add that into this universe of symptoms so that a vocational evaluator who will testify at step five can consider the universe of this person’s unique personal manifestation of their symptoms.

 

Vickie Hadge (18:42)

Thanks so much. you know, knowing that depression is a distinct symptom and we’re not depressed because we have MS, depression is part of our MS. It is really important that that comes into play and we do document that as well and get help with it. I’ve been seeing a therapist for years and she helps me immensely with mine. What are some of the common mistakes that people with MS make when they’re applying for benefits?

 

Nancy Cavey (19:02)

This is not unique to MS. I think there are lot of common mistakes that people make. One of the things on the application, asks you about all the medical providers that you are getting. And you may be focused just on MS, when in fact you might have some cardiological issues, or some other medical condition that you may not think is disabling, but in the combination with the MS can get you over the hump, if you will.

So it’s minimizing medical conditions. Number two, it’s not disclosing all the providers that you’re seeing. Number three, it’s not really giving a good history of the side effects of medication. In the work history form, which is really crucial at step four, it’s not thinking backwards. Now what do I mean by that? When you are filling out the work history form, it’s very detailed. It’s going to ask you what you do.

I like my clients to think about what it is they’re having trouble doing or they can no longer do because I want to emphasize that in the work history form. And then of course there are forms that a person will fill out called an adult function report or a third party function report from others that just either exaggerates things or minimizes things. sometimes it’s the extreme. You really have to think about why it is you could not do your past work, and why you couldn’t do a silly job like sorting nuts and bolts or addressing envelopes all day. And make sure that all of that is worked in to the application.

 

Vickie Hadge (20:35)

Okay, lots to think about when we’re filling out the application. Depending on where in the world employers have different responsibilities. So if people are in work, how do you recommend that they talk to their employer about workplace benefits versus applying for government benefits, the differences between employer disability insurance and social security for MS?

 

Nancy Cavey (20:38)

Well, one of the things that I talk about in pre-planning with clients is, you know, before you stop work, we want to talk about the status of your group insurance benefits because ultimately you’re going to lose your group insurance benefits and you need that treatment and we need the proof. So what’s the alternative that you’re going to be thinking of? Is it going to be cobra-ing your insurance or is it going to be going out into the open market as it exists today?

Or is it getting on your spouse or partner’s group insurance? So that’s, to me, number one. Number two is understanding what type of leave that the employer has, what you have in terms of accumulated leave time, sick time, vacation time, and is the employer going to, and they should, put you on FMLA, but what’s going to happen after that FMLA expires?

If you have a disability insurance policy through your employer, obviously, because I do disability insurance litigation also, you want to get a copy of the employer’s short-term disability plan or policy and the long-term disability policy or plan. And what you’re going to see there is most of these policies or plans will have an offset. They will require you to apply for Social Security disability benefits and then the long-term or short-term disability carrier will reduce your benefits by the receipt of not only what you get for social security benefits, but what your children get until they reach the age of majority. So you need to kind of understand what’s the money going to be? Is there going to be an offset? How much is it going to be? Well, that’s my net. But I’ve got this journey here of a year to a year and a half. So do I have short-term disability that will generally only pay six months? And then am I going to apply for my long-term? If I don’t have insurance, then the question is going to be, where am I at in terms of savings? The other thing I tell people to do is go look at your mortgage or your car note and see if there is disability insurance coverage that you didn’t know you bought that would make the payment for those things if you’re unable to work. So in my view, based on my family’s experience, I think understanding the money, understanding the insurance, is really, really crucial in that family decision as to when you’re going to stop work and apply for benefits.

 

Vickie Hadge (23:14)

Okay, so those long and short-term benefits are key to this process. And I did not realize that mortgage and car notes might have this as well. That’s really fascinating.

 

Nancy Cavey (23:24)

Right, so I if you don’t have short or long term disability benefits, your family has to have a hard discussion about how are we going to get through this process. It’s going to be a year or a year and a half until the claims examiner looks at it and if we have to go to a hearing, it could be as long as three years. So how are you as a family going to survive if you don’t have short or long term disability insurance?

 

Vickie Hadge (23:45)

Okay, good to think about. It is a long process and we do need to be prepared. Like how are we going to survive and pay our bills and what steps can we take to do that as we’re going through this long process? Any steps people with MS can take early to protect future disability benefits?

 

Nancy Cavey (24:04)

You know, I think I’ve covered that in terms of what you need to do to document the status of your disease and the progression of the disease, because again, in my experience, it’s the story, the longitudinal story that Social Security wants to see. And again, you know, we know that MS is a progressive disease, and I think that ultimately, at least in terms of my experience, people are ultimately going to be applying for Social Security benefits. And I think recognizing the financial impact of that as early as possible and planning is crucial.

 

Vickie Hadge (24:39)

Planning is crucial. Like you said, many of us will be applying for these benefits, so planning ahead of time is really going to help us a lot. Anything else you’d like to add?

 

Nancy Cavey (24:49)

I think that treating with a physician who understands MS is crucial. I work here in Florida with a number of MS providers, and they get it. They understand what has to be in the medical records. They understand the importance of the MS residual functional capacity form. And I think you need to understand very quickly whether you have a doctor who’s willing to fill out the forms. Because if they’re not willing to fill out the forms, that makes a case exponentially more difficult. They may be the best MS doctor in the world, but if they’re not going to fill out the forms, then maybe you can get the primary to do it. And I think Social Security prefers that you have an MS specialist. So knowing your doctor, knowing whether they’re willing to document, whether they’re willing to fill out residual functional capacity forms, is really key to protecting yourself because when you need that doctor and the doctor says, I don’t fill out any forms, then I have to tell my clients, look, we’re going to apply, we’ll get going, but you need to find a new doctor and you need to establish care. And when you establish care, I don’t want you to walk in there saying, I want you to fill out this RFC form. I want you to see them three or four times before you ask them. Now, you know how difficult it is to find a doctor who specializes in MS and how long it takes to get an appointment. So you can put yourself behind the eight ball from the very beginning, if you will, by knowing whether your doctor is willing to support your claim and fill out forms.

 

Vickie Hadge (26:18)

Thank you so much, Nancy. All of this has been so eye-opening for me. The planning ahead and the documentation and working with a doctor that is going to help us. This has all been so informative. Thank you so much.

 

Nancy Cavey (26:32)

Well, thank you for having me.