Ardra Shephard:
I'm Ardra Shephard, and this is Tripping On Air, a place to talk (censored) about what it's like to have MS. Normally, I like to make everything about me, but MS also affects the people we love. So weighing in from the partner perspective is Alex Hajjar, my friend whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS or you love someone who does, we want to connect with you.
Ardra Shephard:
MS is the most common cause of disability in young adults. Fortunately, disability benefits exist to replace at least some of your income when a serious illness like MS prevents you from working. But accessing disability benefits can be confusing, time-consuming, and even intimidating. Proving you're sick enough to warrant benefits can be difficult and demoralizing, and there's no guarantee you'll be approved.
Ardra Shephard:
If you're stressing over disability benefits, this episode is for you. Trippers, I am pumped about our guest today. The woman who taught me the nine times table. She taught me the McDonald's Big Mac song. She taught me to drive, and she taught me to never break more than one law at a time. She is one of my very best friends and has known me since birth. My cousin Laura Hillyer is a lawyer who is on the front lines, an advocate for people with disabilities. She's an insurance litigator and she's got the straight goods on how you can make sure you can navigate your disability claim with your self-esteem and your sanity intact. Laura, welcome to the show.
Laura Hillyer:
Thank you. I'm happy to be here.
Ardra Shephard:
I won't make you sing the McDonald's Big Mac song if you don't ask me to repeat the nine times table, because I might have forgotten actually by now.
Laura Hillyer:
It is in no one's interest for me to sing. I promise. I promise.
Ardra Shephard:
All right. Yeah. I mean we're missing out on that McDonald's Big Mac sponsorship, maybe if we don't sing that song.
Laura Hillyer:
Yeah, maybe you can get it this way.
Ardra Shephard:
Listen, before we get to disability claims, the decision to stop working can be excruciating. What kinds of questions should we be asking ourselves when trying to figure out in the first place if it's even time to stop working?
Laura Hillyer:
Well, I think that's a personal question for everybody. It just depends on your own personal circumstances and maybe how much you love working, how much you love the rest of your life, and I think what your doctor says. So when you're at that point where you're struggling at work and you're not sure whether you can continue, maybe accommodations have been put in place, maybe they're working, maybe they're not working, I think you have to evaluate where you see things going forward.
Laura Hillyer:
And certainly everybody feels differently about these things, but fatigue is a common problem that lots of people with MS have, unfortunately. And if you've got four good hours during the day, I don't know if it's fair to say you got to use them to work. I would say it's not fair. I would say life is important and a quality of life is important. So, it's a different question for everybody to answer on their own, but talk to your doctor, and think long and hard about your quality of life.
Ardra Shephard:
I like the point you made about those usable hours. That's a term that I think of all the time. And sometimes we hold ourselves accountable to the same standard as people who can somehow stay awake for 16 consecutive hours, but it's that usable hours and where you give them. And if that lines up with your priority, I think that's a great place to start. But once we have decided to go down that path, and sometimes it's not even our decision, sometimes it may be that our employer can no longer accommodate us. How can we make the best case for being granted and then maintaining disability benefits? Because it's not a process of one and done. It's sort of you may initially get improved, but there is this ongoing obligation to meet the requirements.
Laura Hillyer:
So I think the takeaway message is to be very, very diligent about the paperwork and about the process to take it seriously. If they call you, pick up the phone. If they send you a letter, respond. And it's not something that people want to focus on because it's kind of a downer if you're talking about all the problems that you're having, but it is important to really take the process seriously. And I think having a good dialogue with your doctors, making sure they know the good, the bad, and the ugly, making sure that's documented as much as it can be so that when it is time to go through the application process, all those Ts have been crossed and those Is have been dotted, the more proactive you are and the less you kind of ignore it, because it's a difficult thing to think about, the better. That's my main advice.
Laura Hillyer:
And I think, too, sometimes we see people who, they've applied and there are forms that they have to fill out, like the claimant fills out. But then there are forms that the doctor has to fill out. Sometimes because doctors are busy, especially now post-pandemic, it takes forever to get the paperwork from the doctor. So if you're really proactive and you know you had a consult with your neurologist a few months ago, maybe just ask next time you're in to see your GP, "Can I get a copy of that neurology consult note?" Because then that way, at least when the insurer's asking you for the paperwork, you've got it, and you're not waiting on the doctor or the office secretary to get it for you.
Ardra Shephard:
So just to clarify, if you are waiting for your physician to fill out the paperwork that you've been given and it's taking them time, are you suggesting that you could forward the consult notes directly to the insurance provider?
Laura Hillyer:
Yeah, you can. Absolutely.
Ardra Shephard:
Okay.
Laura Hillyer:
Yeah.
Ardra Shephard:
I think it's also interesting to note being on the same page as your doctor. And I think there is this kind of power dynamic sometimes between doctors and patients. And we are entitled to have access to our own notes and records and it can be a good thing to do, especially if you think your doctor maybe isn't quite taking you seriously to ask for those notes and make sure they are really documenting everything that's going on. But I want to double down on what you said about keeping track of the nitty gritty. What exactly does that look like? I mean, it's one thing for me to make notes about my walking is compromised or I was really tired, but how detailed do we need to be?
Laura Hillyer:
Pretty detailed, I think. It depends on the nature of what you're experiencing, and if you're in the relapsing and remitting stage, it's even more difficult because your condition is fluctuating. That's a common thing. But I think if you're having incontinence issues? It's embarrassing, I think, but don't shy away from it. That's a real symptom. That really impacts on someone's ability to work like and be there reliably and in the way we all want to show up for work. So those are the kind of symptoms that you need to be really upfront about.
Laura Hillyer:
Same thing with fatigue, that's an invisible symptom. It's not something that we can take an x-ray of and say, "Oh, Ardra's tired today." It's something that you have to give specific information about, make sure it's documented, ask your physician for suggestions about how it can be managed. There are some. Take advantage of advice that's offered to you. That's important. But, yeah, I don't want to make people hyper focused on their symptoms because it's challenging enough already, but when the insurance adjuster reviews your claim, that's the stuff they're going to be looking for. So the more that's documented, the easier the process will be.
Ardra Shephard:
So, yeah, you did say Ardra's tired today. Ardra's tired every damn day. But fatigue, I think people would be surprised to know that fatigue is actually the number one reason why people with MS stop working or work less. And it's actually, also, as you touched upon, the hardest symptom to prove. So I mean, if we can get specific about how do we convince insurance per providers that medical grade fatigue is real? How do we convince our employers? How do we convince our friends and families? Sometimes even how do we convince ourselves?
Laura Hillyer:
It's tricky. Sorry, go ahead Alex.
Alex Hajjar:
Oh, no. I was just going to say, I think it like the detail is kind of excruciating as well. I remember at one point, Nicole was filling out, you'll find out out how new I am to long term disability in a second, but when we were filling out, or like I said, Nicole was filling out some paperwork and the doctor was kind of backing her up. It was like minutes, by the minute they would've to say, "She could only walk for so many minutes before she had to take a break. And this is how many minutes she was available to move from point A to point B." So it was, like I said, quite hyper detailed notes in terms of how much she could move and what she was available for, for work.
Laura Hillyer:
Yeah. So a lot of these, sorry, a lot of the insurance forms do give you that kind of hyper detail and the companies are looking for it. And that's why having, as well, we talked about dialogue with the physician, dialogue with the HR person at work can be helpful, assuming they're supportive. Having that dialogue. "You know what? The fatigue is really unpredictable. I can't make that meeting today at 10:00, but I can do 2:00." Making sure that that kind of stuff is documented. Making sure that, if there's lifting that's a part of the job, obviously the more physical the job, the more demanding it's going to be. But those forms are really detailed. They ask like how many hours a day are you required to sit? How many hours a day are you required to stand? They kind of assume that sitting is relaxing too, by the way. I always find that's kind of funny. Oh, it's easy. She just has to sit all day. But no, that's where the cognitive demands of the job, those forms also ask about those. So when the doctor fills them out, being clear that it's a cognitively demanding job, which often sitting jobs are, that's really important.
Ardra Shephard:
What kind of jobs can I legally do lying down? That's what I want to know.
Laura Hillyer:
I'm not going to answer that today.
Ardra Shephard:
Good. I mean, I think there's so much to unpack here, but I think it's also about documenting what you missed out on because you did something else, if that makes sense.
Laura Hillyer:
I agree. If you had to leave something early, or if or even if you did something, let's say that you did, I don't know, let's say either an event at work that was really great, but demanding physically and then you crashed for the next three days, or maybe it was a family birthday party that you put on and then you crashed for the next three days. Telling the doctor, "I was able to do it, but then I was out." That's the kind of thing that if it's documented does kind of explain that invisible symptom of fatigue.
Ardra Shephard:
It's an interesting experience when we spend so much energy trying to be positive and to focus on what we can do, that there is this disconnect. It does feel gross sometimes to just really have to focus and document on all the things you can't do. One other thing, I mean, you touched a little bit about the shittiness of incontinence and how that can be a disabling impact, but even just the time that it takes to manage your bladder and bowel routine, how much time, how much of your life, do you spend in the bathroom is another measure, right?
Laura Hillyer:
Yeah, absolutely. It is time consuming.
Ardra Shephard:
It is.
Laura Hillyer:
So that should be noted and that can impact on whether you can be accommodated.
Ardra Shephard:
I love, too, that you talked about cognitive function because I think that cognitive testing at baseline is not something that's been routinely done with MS, but we are seeing more and more that cognitive impact can happen much earlier. We have so many ways of compensating that we don't always recognize our deficits. I know I don't until somebody else points out to me that I no longer know the nine times table.
Laura Hillyer:
I would never do that because I'm afraid of you. I would never ever tell you that you miss something, ever.
Ardra Shephard:
Yeah, well, you're wise.
Laura Hillyer:
I know.
Ardra Shephard:
But I mean, it's like an argument to get cognitive testing because that can help support a disability claim that can show working at a desk for eight hours, there's a cognitive impact that has an overall impact on fatigue as well.
Laura Hillyer:
Yeah. And there are vocational assessments. This many, long way down the road, but there are vocational assessments that are done by experts in the field who put someone into an office type environment, it's all a simulation, but they put them in, and they make the phone ring, and they have them try to multitask, and they track how they do over the course of the day. And they actually do quantify and identify the deficits that people are having and the impact of cognitive inefficiencies. So we don't do that in every case obviously, but there are ways that actually can be tested and proven when you have those deficits.
Alex Hajjar:
Is that something that's covered by a workplace benefits plan or something like that? Is that typically something that's covered?
Laura Hillyer:
No, not in my experience. It usually arises more when there is litigation. Sometimes the insurer will do some type of assessment like that. It's not usually as detailed as what I was just talking about, but it is an attempt by them, and by us in the circumstances I was just describing, to actually measure those deficits that are otherwise kind of invisible or a little bit kind of wishy-washy, they're hard to quantify.
Alex Hajjar:
Right.
Laura Hillyer:
So that's why they do that.
Alex Hajjar:
Yeah. I mean, I asked about coverage because something like drug coverage has always been on my radar, Nicole's radar, whenever we're looking for, not looking for particularly, but just new jobs come up or something like that, or switching jobs, being in between careers and things like that, so drug coverage has always been sort of the primary thing. We've never really thought about long-term disability.
Alex Hajjar:
So I mean, how important is it to kind of establish your understanding of long-term disability early on or as soon as possible? Another question being could Nicole be covered on my plan if she stops working or if she isn't covered or something like that? How do I look into, what do I ask my sort of coverage to find out? And, yeah, is it too late to get a long-term disability if she starts a new job, because she has an existing condition? What's the attitude towards that? Are they afraid, avoiding? I don't know. I'm wondering if I should be freaking out at this point?
Laura Hillyer:
Ha. Well, I don't want you. Now I'm really afraid to answer. No, I'm just kidding.
Alex Hajjar:
I just build up these questions and I freak out myself.
Laura Hillyer:
No, they're good questions. So first things first. There's two kinds of disability policies, sort of in general. One is a government or a publicly available policy and those depend obviously on where you live. In Canada, we have like our Canada pension plan, which has both a pension component when you get older, but also has a disability component. And then provincially, we have some as well.
Laura Hillyer:
Then you have the private plans, which I think is kind of what you're asking me about, Alex. So for the most part, the private plans are employee based. So through my work, my husband and my kids have coverage for going to the dentist or physiotherapy or stuff like that. But only I have disability coverage through my work, because I'm the employee and that's the coverage. So that would be the same for your wife. She would not be covered under your, I suspect. I would be very surprised if she was.
Laura Hillyer:
And then in terms of switching jobs, that is an issue, because some policies, and we always say it depends on the wording of the policy. You got to read the policy. But some policies do have exclusions for pre-existing conditions. So if someone becomes an employee, they switch employment, and they're now covered by the benefits of the new employer, those benefits when you look at that policy may exclude pre-existing conditions. So sometimes it can create an impediment to leaving employment because you want to have that coverage available if you need it because it's really important coverage.
Alex Hajjar:
Yeah. We tried to get life insurance and they totally didn't even look at. As soon as they saw MS, they were like, "Nope, too much of a risk for us." So I think at any level it seems kind of ridiculous, but, yeah.
Laura Hillyer:
Yeah. I'm sorry to hear that, but they're actuaries, they look at statistics, they are not warm and fuzzy people in general. They're looking at the numbers. And they're risk averse too, really? Yeah.
Ardra Shephard:
I mean, if anyone out there listening is not diagnosed with something yet, don't decline insurance. When I had my first job, I was so young. I thought, "I only am ever going to need birth control. I don't want to pay my monthly insurance premiums." And I declined insurance. And then just like a couple of months before I was diagnosed, the employer made it mandatory, and oh my God, thank God they did. But I still declined critical illness insurance, which would've netted me like a million bucks when I was diagnosed with MS.
Laura Hillyer:
So then we'd be way closer.
Ardra Shephard:
I mean. Yeah. Don't decline insurance. Now I'm shilling for the insurance companies. When you need it, you need it.
Laura Hillyer:
Yeah. No, get it when you're young too, as soon as you can, because the earlier generally that you lock it in, the lower the rates are over the course of the policy.
Ardra Shephard:
Yeah. I mean, it was cheap. I didn't want to cut into my vodka fund, but you got to do it.
Alex Hajjar:
Who does?
Laura Hillyer:
They made you do it.
Ardra Shephard:
They made me do it. Thank you. Listen, especially when disability is invisible, it can feel unsafe to express joy, when the consequences of not being taken seriously are so serious. Laura, I feel like you might be the wrong person actually to ask about this because your social media is literally the most boring. You are one of those lurkers who never posts anything. You just creep everyone else's. But that said, you are-
Laura Hillyer:
I don't even know why we're friends.
Ardra Shephard:
I know. Because you love following my Insta.
Laura Hillyer:
Yeah, yeah. I do. I actually just got Insta.
Ardra Shephard:
Yeah. But you haven't posted anything. You're terrible.
Laura Hillyer:
I don't know how to. Whatever. What's your question?
Ardra Shephard:
My question is how concerned do people need to be about what they post on social media?
Laura Hillyer:
So I'm going to try not to freak Alex out or anybody else, but I'm going to go with pretty concerned. Yeah, I'm going to go with pretty concerned. Because remember how I talked before about the good, the bad, and the ugly and how important it is to talk to your doctor about all those things? The problem with social media is that aside from you, because you share everything, and I'm not going to say you overshare because that wouldn't be very nice. But anyway, not everybody shares like you do. Okay? Most people just put the good on. And I do, when I make a pie, I put a picture of the pie on my social media.
Alex Hajjar:
Oh, I'll follow you for pie.
Laura Hillyer:
Oh, I make really good pie, Alex. I shouldn't say that. It sounds very boastful. But I feel like objectively, I make good pie.
Ardra Shephard:
No, you make good pie.
Laura Hillyer:
Thank you. Thank you.
Ardra Shephard:
Yeah.
Laura Hillyer:
Okay. And I make the pastry too. That's critical. But, yeah, nobody puts the bad and nobody puts the ugly, for sure. So it's not the full picture. So if you don't have privacy settings on your social media, which I think everybody should, or you have a million friends or something like that, then it's pretty easy for the insurance company to look you up. And they will, of course they will. You have to assume that they will.
Laura Hillyer:
So I suggest putting your privacy settings on to the max and checking them because sometimes they change them on you. And I think you should be careful because we've heard of surveillance before and we don't see it in every case by any stretch but we do see it periodically. It's there. And I did actually have a client whose case is now finished. He sent me a text a little while ago, and I told you about this Ardra, because I think it's so funny. So it's one of those, I don't know what you call it because I don't understand social media. What is it a called?
Ardra Shephard:
It is meme. It's a meme.
Laura Hillyer:
Okay. Thank you. It's a meme. So it says dance like no one is watching, but text and email like it will be read in court one day. Love, your lawyer. So it's true. And that applies to social media too because it's not a real reflection of the whole picture, because people don't put the full picture on. That's why it's an issue. So either put the full picture on, which I'm not suggesting, or just make sure you've got significant privacy settings and always be aware that it could be looked at.
Ardra Shephard:
Used against you. I think that's the frustration is because it's generally accepted. We know that social media is a highlight reel. We know that it's a lot of bullshit, but it still can be used against you.
Laura Hillyer:
Yeah. But if you're being honest with everybody and, whatever, if you make a pie or whatever, you throw a birthday party and it's a big damn deal, but then you've gone to your doctor, you've explained, "Then I was on the couch for three days." Then you're not misleading. You're just just putting part of it on the socials. I think that's it.
Alex Hajjar:
Yeah. I think that scary part comes like if you're using a mobility aid on your social media and they use that to say, "We're not going to cover you because you require a mobility aid or something and we're going to have to pay for that. So your claim is denied or something."
Laura Hillyer:
I don't know if I understand that, because I feel like if you were having the mobility aid on the social media, then to me that would be evidence of the fact that you needed that support.
Alex Hajjar:
Well, just that they kind of went and searched your social media to use it against you, if that makes sense.
Ardra Shephard:
Sorry, Alex are you talking about like a perspective employer? Because I think-
Alex Hajjar:
Yes.
Ardra Shephard:
Yeah.
Alex Hajjar:
Sorry, yeah, that's right.
Ardra Shephard:
Yeah, so we're talking about insurance, but yeah, if you're talking about, and if you've applied for a job, I think it's pretty normal for employers to Google you.
Alex Hajjar:
Sure, yeah.
Ardra Shephard:
Yeah. They might see that you're disabled and hold that against you. I don't know. That's a gross conversation for a different day.
Laura Hillyer:
Unfortunately that does happen.
Alex Hajjar:
Yeah. Sorry. I guess. Yeah, my mind just went in that direction, but. yeah.
Laura Hillyer:
No, but the point, whether it's an insurance company looking at it or a prospective employer. I think it's just social media is so public and it's just something to be mindful of. I don't think you should be paranoid about it and I don't think you should only creep people and put pictures of pies. I just think you have to be mindful of it. That's all.
Ardra Shephard:
Anytime I post anything, you have to consider that anyone can see it. Your best friend, but also your worst enemy and whoever. Yeah, I think that's maybe the message. I don't know. It's still murky. Just, yeah. I don't know. I am all in favor of people being able to have those joyful moments and share and express. For me the complication is feeling like you constantly have to present yourself to the world as suffering and in pain. And just this idea that you're not entitled to feel joy and happiness and pies and birthday parties. You know what I mean?
Laura Hillyer:
Well, and I'm sorry. I hope you don't feel that way. You shouldn't.
Ardra Shephard:
I mean, yeah, I don't personally, but I think there are people who do, when they're afraid they might lose their livelihood if they show anything other than pressure sores and mobility aids.
Laura Hillyer:
Well, no, and it's not fair. It's not fair. It is one of the most unfair parts of the process, one of the most unfair parts of MS, and probably our culture too, just because of the way that we evaluate success and the way that people identity, like how they identify. But one of the suggestions, because you wrote a blog about this long time ago, Ardra, if I recall correctly, one of the suggestions was, yeah, you got to keep track and you got to focus on all this stuff so that you're kind of armed if the insurance company asks you questions, but that having a gratitude journal to kind of go the other way, so that you are taking something that's not necessarily positive, but you're sort of protecting yourself on the other end of it. I thought that was a really good suggestion and not just for people who are dealing with this kind of stuff, but being mindful of the things that we should all be grateful for and that kind of positive outlook. The science people tell us that actually translates into better quality of health and life. So I think we should do it.
Ardra Shephard:
Well, if science people say it.
Laura Hillyer:
Those science people.
Ardra Shephard:
I won't question it, yeah, because I can't. Laura, call my lawyer sounds bougie and expensive. When is it time? How do we know when it's time to seek professional help? And how much is this typically going to cost us?
Laura Hillyer:
So I think, and I'm not going to do a Better Call Saul joke. I was thinking about that, but I won't. I mean I think most people, listen, most people when they call me, they don't want to be calling me. It's gotten to the point where they're like, "What else can I do?"
Ardra Shephard:
I want to be calling you, yeah.
Laura Hillyer:
Which I'm very grateful for. But, yeah, most people don't call me because they want to call me. They're upset. They are feeling like they're not being treated fairly by their insurance company. They have questions. Maybe they've been denied. Maybe they think they're going to be denied. Something's gone wrong. A lot of insurance companies have internal appeal processes as well. Sometimes those work well, sometimes they're a waste of time. They just sort of string people along in my experience. Sometimes I think that they resolve as they should, but sometimes I feel like by the time we get involved, the client's gone through a bunch of different internal appeals and it's sort of already messy. So my suggestion is if you feel like you might benefit from talking to a lawyer or you have a question that you think a lawyer could answer, call a lawyer. Because most lawyers will talk to you, and to your question about cost, most lawyers will talk to you, at least at the beginning, without charging you anything, just to kind of consult with you. At least I would. And most of the people who do what I do easily will do that because they're trying to figure out if there's a potential case as well. And they're trying to help you figure out what what you should do.
Laura Hillyer:
So call a lawyer. Choose someone who's got a good reputation and who's got good reviews and look them up, do your research. Make sure that this is an area that they practice in and then call them and see how they present to you and if they sound like they know what they're talking about, then talk some more to them. And if not call somebody else. But most people who call me, they don't call me because they feel like they're being treated fairly or they agree with the insurance company's decision.
Ardra Shephard:
Yeah, and I think just to interject, I think it's important to recognize that just because an insurance company has said no or denied your claim doesn't mean that's it. You should, I think, in that case seek legal advice, professional advice, to make sure that decision is warranted and that you have other options to pursue.
Laura Hillyer:
Right, because the policies and the protection they provide, especially if you value them over the years in the future, I mean, they have a real value to you and to your family. And that's why they're called peace of mind policies, because they're designed to provide that. So they're absolutely worth inquiring about.
Ardra Shephard:
Yeah, and I don't know what the percentage is of initial claims that get denied and then are appealed and maybe a lawyer has helped and then the claim is approved. But I think it's significant enough that legal counsel is a good investment. And I would also point out that if an insurance company offers to buy you out, that is also an important time to contact a lawyer.
Laura Hillyer:
I agree.
Alex Hajjar:
Is that a red flag?
Laura Hillyer:
No, not necessarily. I mean, if they know that your condition is not likely to improve and they're likely to continue paying you until you reach the termination of the policy date, they may decide, let's just see maybe they'd like the lump sum now, as opposed to receiving the monthly amount? The issue is that you're at a disadvantage because the insurer knows the true value financially of that policy over the years and what they'd have to invest now to pay you that 10 years, 15 years down the road. You don't know any of that. So it is really wise to speak with a lawyer because you may sign off for significantly less than what that policy could pay you, if you chose to stay on the claim, which you have the right to do.
Ardra Shephard:
The offer is going to be in their best interest and you need to make sure that it's mutually beneficial before you sign anything.
Laura Hillyer:
Well said.
Ardra Shephard:
Laura, thank you so much for being here and for the reassurance that there are tools and resources and allies available for people navigating the disability claims process. Invisible illnesses aren't always taken seriously and the burden to prove how sick we are is so pervasive that it can be a challenge to think of ourselves as healing or whole. When you have to document your deficiencies over and over, it can be hard to think of yourself as anything other than sick and incapable.
Ardra Shephard:
If you're struggling with a disability claims process, considered keeping a list, a journal just for you where you can count your blessings, list the people who love you, pay attention to the activities that fill you up. Remind yourself of what you can do. Give yourself permission to feel joy from time to time, post a picture of that pie, and maybe give thanks to your legs who are just trying their best and don't need any extra attitude from you.
Ardra Shephard:
Disability benefits are not charity. They are the mutually agreed upon contract. You got sick and you got a raw deal. MS takes a lot. Don't let it take your sense of self worth too.
Ardra Shephard:
Thanks for listening to Tripping On Air. Don't forget to visit us at trippingonair.com.
