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Jill Brook: Hello fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are discussing children's disability benefits for dysautonomia. We get a lot of questions about this, so today we are so pleased to have attorney Krysti Monaco with us.

She specializes in helping dysautonomia patients and their families apply for and win disability benefits. She is an attorney in Florida at the Law offices of Nancy Cavey, who spoke to us a couple weeks ago about adult benefits, and she is a passionate advocate for individuals with disability. Her interest in disability law was inspired by her own mother's 20 year battle with multiple sclerosis and the struggles that she faced while securing disability benefits.

And this experience ignited Krysti's commitment to helping others navigate the complexities of the disability system. With over a [00:01:00] decade of experience in the field, eight years as a paralegal, and the last two as an attorney, Krysti combines expertise with empathy, empowering her clients to fight for the support they deserve.

She does all kinds of volunteer work. She has attended the Dysautonomia International Conference. She is a wealth of information about, I know what can feel like a really, really overwhelming topic. So Kristi, thank you so much for being here today.

Krysti Monaco: Yeah. Thank you so much for having me.

Jill Brook: So how did you get into this space? What made you first interested in helping children or under eighteens with disability benefits in the world of dysautonomia?

Krysti Monaco: Sure. So it's actually a very interesting story. So a few months back, I had the privilege of attending the Dysautonomia International Conference in Raleigh, North Carolina. I was there as a legal resource to answer questions, give advice to anybody who needed it, and pass out as many resources as I could.

Now, at our firm, traditionally, we focused [00:02:00] most of our work on adult Social Security Disability and SSI cases, which is just where the bulk of our practice has landed. But this conference really shifted something in me. It was an amazing experience. So for two full days, I sat at my booth and I spoke to people day in and day out who live every single day with dysautonomia.

And if you've ever been to one of these conferences, you know, it's not just an event. It's an emotional space. It's people finding others who get it. And for me it was listening to people, listening to story after story of individuals struggling with not just their health, but with the crushing weight of navigating a system that just simply wasn't built for them.

So these two days were very long, eight hours each day, back-to-back conversations, but they were also some of the most meaningful hours I've ever spent in this profession. Out of all of those conversations one totally shifted my, my mindset and our practice. It was about three minutes before I was about [00:03:00] to pack up and leave to go catch my flight.

A young woman, she was about 17 years old, approached my booth and asked me if she could have a conversation with me. So she has lived her life with POTS and Ehlers-Danlos. So she sat down across from me at my booth. And normally when younger individuals wanna address an attorney, the parents do all the talking. So her father, he came to the table, she sat down, and then he took two steps back, which I thought was interesting, and he let her control the conversation. And for the next 45 minutes, she carried the conversation with me confidently, clearly and intelligently. She asked me questions that many adults are too nervous to ask, questions about the process, about the future.

She showed me just how much she thought of, researched, and how much courage she put into this conversation. So as she spoke, I found myself feeling two very strong emotions. On the one hand, deeply impressed, right? I have a 17-year-old girl, seriously ill, facing challenges that many people [00:04:00] couldn't even think of. Yet she was sitting across the table from me, an attorney that she didn't know, and advocating for herself in a way that was way beyond the maturity that she should have been. And on the other hand, it broke my heart a little because it shouldn't take that level of courage of a 17-year-old to fight for something as basic as security and support.

So during the talk, I glanced back to her father a few times watching his daughter handle this conversation, and the pride on his face told me everything I needed to know. He was gleaming, not because he wanted to step in, take over and handle the conversation, but because he was watching his 17-year-old daughter claim her voice in a world that tries to silence or minimize young individuals with disabilities.

So it was like a light switch flipped in my head. I realized that there are many children, teenagers, and young adults living with these disabling conditions that don't just need doctors and therapists. They also need advocates, advocates who understand the system, [00:05:00] advocates who understand their, their conditions, the etiology of those conditions. And they need somebody who understands specifically the social security space and who can stand up for them in that system that just wasn't designed for them.

So I came back to St. Pete, Florida and I sat Nancy down and I said, that's it, we're gonna do children's SSI cases and we're gonna focus on dysautonomia. So, told her my story, she was thrilled and that's how we got to where we're at.

Jill Brook: Wow. Well, it's funny, like, well thanks if, if that, if that 17-year-old patient is out there listening, hey, thanks. We have a new, wonderful resource.

Krysti Monaco: Yeah. And honestly I would love her to reach out to me if she is listening out there because I, I just want, I didn't tell her, right. I didn't tell her how proud she made a complete stranger, but I think that it's important that she knows that she changed my life.

Jill Brook: Aw, that's wonderful. Okay, well thank you for being in this space. Thank you for caring. So let's dig into it. What qualifies a child or a young [00:06:00] person with dysautonomia for social security benefits?

Krysti Monaco: So when it comes to supplemental security income benefits for children, which is the program that children are eligible for, the focus isn't the same as an adult. So the focus isn't on whether that child can work because children don't typically have a work history. Instead, the Social Security Administration is looking at whether the child's medical conditions causes severe functional limitations compared to other children similar to their age.

So in other words, they wanna know how the child's day-to-day life at home, at school, and in the social aspect are impacted by their medical conditions. So when we talk about dysautonomia, that's where things start to get a little tricky. Dysautonomia is a complex condition, which you know, and it involves the dysfunction of the autonomic nervous system, the part of the body that controls things that we don't consciously think about, right? Heart rate, blood pressure, temperature, regulation, digestion. And the key [00:07:00] here is that dysautonomia is not listed in Social Security's Blue Book, which is their book of impairments, and it's the guide to medical impairments that qualify someone for disability benefits. Now, that doesn't mean that if a child has dysautonomia, that they don't qualify.

Far from it. It really means that they're gonna evaluate it under the body systems that those symptoms are affecting, not the diagnosis itself. So if the symptoms that they're experiencing are recurrent fainting, POTS, extremely high or low blood blood pressure, Social Security is gonna be looking at the cardiovascular disorder listings in their Blue Book.

If the main symptoms are fatigue, dizziness, brain fog, migraines, temperature regulations, they're probably gonna look more under neurological or autonomic dysfunction. Now, in some cases, if the child's dysautonomia is secondary to another condition like Ehlers-Danlos, Chiari Malformation, or autoimmune disease, it can be [00:08:00] evaluated within the broader of that framework too.

Now one of the main things to think about when you're filing for an SSI claim or thinking about it, a diagnosis alone doesn't win a case, right? They're looking for functional impact that it has on one's life. So they're looking beyond the label of dysautonomia to understand how those symptoms actually interfere with daily functioning.

They're gonna look at how often the child misses school because of fainting spells of fatigue, how much time is spent resting or laying down during the day, how well the child can concentrate in class, whether they can keep up physically, socially, if they have interaction issues. If a child can't sustain normal school attendance, struggles to complete homework due to fatigue or mental fog, or needs constant breaks to manage other symptoms, and those are marked in their medical records extreme limitations, Social Security is going to use that information to determine whether or not they're eligible. So [00:09:00] when building a case for SSI for children, we wanna think of it in terms of real world limitations, not medical terminology.

We're really trying to paint a picture, tell a story to Social Security as what life really looks like for this individual, right? And that's true for children and for adults, how their symptoms impact everyday simple tasks that children might do without even thinking twice.

Jill Brook: Okay, so that makes a lot of sense and thank goodness it's that way since dysautonomia patients are all so different in what their functional limitations are. But so like, so this is a court, this is legal stuff. So what is the evidence? Like what do you use to prove this stuff?

Krysti Monaco: Of course. That's a great question. So like I said, diagnoses aren't everything, right? So this is where the evidence comes into play. For children's cases, evidence is a little bit different than for adults' cases, right? What Social Security is doing is they're looking at your medical records. They're not going [00:10:00] to take your word for it, or even my word for it, what the symptoms are and how they impact the functionality.

So they want medical proof. So we're talking about medical records, right? Regular treatment records from specialists, neurologists, cardiologists, pediatricians, who can describe the, the functional limitations that the child is experiencing. Diagnostic studies help, tilt table testing, heart rate variability studies, blood pressure logs, all of those things help. For children, school records are really big. IEPs, so if they have an individual education plan, 5 0 4 plans, attendance reports, teacher statements, if they needed additional help, all of that helps, right? Because again, we're trying to establish the difficulty that that child is having on a day-to-day basis, doing things that normal children do.

Another thing that individuals don't really think about that we at Cavey Law think is huge is daily functioning reports. Whether that's from caregivers, teachers, or parents, we wanna document, right? Things [00:11:00] like fatigue, fainting, days missed from school, migraines, dizziness, things that if we test for, not always gonna show up on a test, right?

There are diagnostic studies for a lot of things, but fatigue isn't one of them. And how are we going to show the frequency, the duration, all of those things, if we're not keeping a log? So we often tell our parents, look, keep a log, okay? And we're gonna submit it to your doctor because if your doctor doesn't know, it doesn't get into your records.

And if it's not in your records, Social Security doesn't take it into consideration. So one of the most important things with regards to evidence to understand is that when Social Security is handling a children's SSI case, we're not using the same ability to work standard. Now, they're talking about daily functioning across six developmental and functional areas, which they call domains, which we're gonna get into a little bit later.

Jill Brook: Okay. Okay, great. So it sounds like a lot of documenting on the parts of parents and doctors, [00:12:00] and is there anything else that they can do to like, help support the child's application? Do you need the doctor to like explicitly say, yes, I am going to participate in this process with you? Or do you just need them to do their normal record keeping and you just send in their records? Like, I guess this goes in sort of the larger, the larger question of like, is there any other specific things that parents or doctors could or should do to help support the children's application?

Krysti Monaco: Sure. Let's start with, let's start with doctors first, actually. A lot of times when we have individuals call us and they talk to us about wanting to file, the first question we ask is, have you had this conversation with your doctor, right? Because the doctor's support is really going to be everything. Are they, are they supportive of the claim? Are they appropriately documenting? And then my second question is going to be, are you as the patient, or you as the parent of the patient, appropriately letting the doctor know what's going on, right, because the doctor is not a [00:13:00] mind reader. And so if you are not being specific when you're talking to the doctor about the symptoms and the impact they have on the functionality, it's not making it into the medical records. Most doctors do a really good job of being very detailed when they know that there's a disability claim at hand.

And if they're not, that's our job to review it and have a conversation with our client and say, okay, either you're not doing a very good job at the doctor, or the doctor's not doing a very good job of taking notes, so let's take a different approach, right? And so that's where we will kind of say things like, we want you to quantify your symptoms when you go to the physician, okay. So when, as the parent, when you're talking to the physician about the symptoms that your child is experiencing, we want clear and functional statements, okay? So if the doctor's asking how your child has been doing and we're, we're telling him how the dizziness has increased, we wanna talk about how my child cannot remain upright for more than 15 minutes at a time due to [00:14:00] dizziness, right. Now I'm quantifying it. And so we now know if it's only 15 minutes, they're not able to sit through an hour long class at school, right? Or requires frequent and recumbent rest periods throughout the day, every 20 minutes for at least 10 minutes, right? And so we want it to quantify these things, and when we are clear to the doctors, the doctors document all of that in their medical records and we see it. And if they don't, then we go to step two. Let's keep those logs. Let's physically bring the logs into the doctor and say, please make these a part of our chart. This is what's been going on.

So Social Security, SSI, SSDI, children or adults, everything's about documentation. And it's very important because Social Security is going to the documentation to find the evidence to build the case. And so we wanna make sure that not only are we being clear with the doctor about the severity and the frequency of the symptoms and how they're affecting daily life, [00:15:00] we also wanna make sure that we're talking about any side effects of medication, right? A lot of times, medication in and of itself is causing additional fatigue. The salt loading requirements, the IV fluids, how often, how long is that taking? Right? Is that taking them away from doing things a normal child would do? So we wanna make sure we're incorporating all of that into their medical records.

Jill Brook: Okay. Okay. You know, it's funny because I remember the exact day I, it, it was not for Social Security, it was more for a health insurance thing, but that I walked into my doctor's office and I said all I want to do today is document some stuff, because I realized that a lot of this is just a documentation game. And that was the day he said, bingo. And he's like, okay, what do you need me to document? And I was like, oh, okay, I, I never thought a doctor's appointment would look like this, but sometimes it has to.

Krysti Monaco: Yeah. Yeah. And honestly, the, the more open you are with the doctor, the better, right? And like I said, they're not mind readers. And everybody is, [00:16:00] everybody is guilty of this, right? We go to the doctor and they ask how we're doing, and we say, fine. And we forget about maybe the last three or four weeks that we haven't seen the doctor and all that's happened, right? All of the periods of fatigue, how many breaks we had to take, all of the activities that we, that we missed in our lives because of how we felt. We forget to say that. And so that's where these logs come into play, right, especially as a parent. Especially as a parent trying to handle the system on their own, they already have so much more to worry about their children's health now, trying to get this additional support, maybe the problems the child's having at school. Keeping a log is gonna be your best friend in terms of making sure you're accurately and clearly relaying to the doctor exactly what your child is going through so that it can all be taken into consideration for the Social Security claim.

Jill Brook: Okay. And I know that what I've started doing for my local primary care provider, 'cause she only has like a few minutes with me, is I, I bring her in a little summary of this is what's going on with me lately, [00:17:00] and she just scans it into my record usually.

Krysti Monaco: And that's great because you know, I read records every day, right? Every day I am reading hundreds of pages of medical records, and more often than not, I'm looking at a medical note and it says something like, patient diagnosed with dysautonomia, continue same medication regimen. See follow up in four weeks. That tells Social Security absolutely nothing, right? It doesn't tell them what the, what the symptoms are, how often those symptoms are happening, what it's limiting them to in their daily life. So what we would want it to read like is patient's orthostatic intolerance and fatigue severely limits endurance and ability to attend school consistently. She requires frequent breaks, rest periods, and remains symptomatic despite multiple treatments. Follow up in four weeks, right? The ending can be the same, but do you see how the second one is, it tells us what the symptoms are, how it's impacting their ability to function on a day-to-day basis. And so sometimes before you [00:18:00] file for these types of benefits or before you think about filing for these types of benefits, getting medical records is the number one thing you need to do because not all doctors are, like you said, they're not documenting it if we're not being cognizant enough to say something about it.

And so, it's important to know what's in your medical records before you jump into something that's based off your medical records.

Jill Brook: Yeah, that's great to know. So can you talk more about how a child's SSI case is gonna be evaluated differently than adults.

Krysti Monaco: Absolutely. So if you watched Nancy's episode, she went over the five step sequential evaluation I'm sure on how adults' Social Security claims are evaluated. SSI for children's is completely different. Remember, no work history. So they can't decide whether or not they can do past relevant work 'cause there is none.

So here they're, they're looking at the six functional domains that Social Security determined can affect [00:19:00] daily life. So the first one is acquiring and using information. The second is attending and completing tasks. The third is interacting and relating with others. The fourth is moving about and manipulating objects. The fifth is caring for oneself. And the sixth is health and physical wellbeing. Now, to be found disabled, they have to have an extreme limitation or a marked limitation in at least two areas of those. Now I'm sure your next question is going to be how do they get those extreme or marked limitations, and that again is in the medical records, right?

And so we're looking for things in the medical records, let's say something like due to brain fog, fatigue and concentration issues, she has a difficulty attending and completing tasks, right? And then we actually have a form that we have created called a residual functional capacity form for dysautonomia cases that we send to the physician.

[00:20:00] And we've edited it to match these six domains, and we ask, what are the limitations? Extreme, mild, marked, right. And we're asking the doctor to actually mark down so we can make it very clear to Social Security that they in fact, do have those limitations. So when we talk about these domains, let's talk about them individually.

We have acquiring and using information. So we're talking about trouble comprehending new material, following directions, difficulty recalling what was learned, problems with comprehension, writing or math skills, or maybe needing a little extra help at school. And for a child, a child with dysautonomia, you're probably going to experience brain fog, poor cognitive stamina, which is gonna make it difficult for them to concentrate for long periods of time or retain the information, frequent absences from school, which interrupt their learning continuity or fatigue and dizziness, which can cause difficulty focusing on [00:21:00] lessons, right?

So, number one is gonna be one of the most places where people are getting those marked and extreme limitations. One and two, right. Two is attending and completing tasks. So difficulty maintaining attention or persistence, needing frequent breaks or reminders, inability to sustain mental or physical effort long enough to finish any tasks, or being easily distracted.

Again, if an individual's not able to sit upright for long periods of time due to dizziness or syncope, then obviously they're not gonna be able to maintain that attention or persistence. Interacting with and relating with others. This is gonna be how, how the child initiates interpersonal relationships, right?

Can they communicate with their teachers or their authority figures in school, the principal, the guidance counselor, the cafeteria woman. Do they withdraw from social experiences, are they irritable, do they have poor communication skills? [00:22:00] And sometimes children with dysautonomia may isolate because of embarrassment, right, over their symptoms. And, and honestly, that's not even just with dysautonomia, it's with any condition, right? And so that may have them a little socially isolated. So some, some children do have those limitations in, in that criteria. The fourth is moving about and manipulating objects. So difficulty walking, climbing, lifting, or manipulating small objects with their hands, poor coordination or balance, or needing adaptive equipment. This is where the dizziness or fainting is going to come into play, right? So if they have to require frequent rests or move, or change positions or lie down frequently, that in and of itself is going to keep them off task. Five, caring for yourself. So needing reminders or assistance for personal care, taking medication, difficulty managing illness or safety awareness. And then six, physical and health wellbeing, right? So, frequent hospitalizations or doctors visits, [00:23:00] significant absences from school due to illness, significant medications or therapies, right?

If they have to go get an IV twice a week for salt intake, then how long does that take? How is it taking them outta school? Is it doable after hours? Probably not. So there's a lot of things that Social Security is looking for. One of the things we do is, again, send the doctors the residual functional capacity forms.

If I see in the medical records that the doctors is specifically talking about these six domains, which of course they're not listing them by name, but we're, we're recognizing it in the medical records and we're immediately sending an RFC form because we wanna hand this over to Social Security on a silver platter so that they see everything they need to see upfront.

Jill Brook: Okay. And that RFC form is that residual functional capacity.

Krysti Monaco: Correct. Yep.

Jill Brook: Okay. So I know that there's, you know, lots of pitfalls, lots of potential mistakes, lots of things that can screw this up. Tell us about those.

Krysti Monaco: [00:24:00] Yeah, absolutely. Okay, so here are our mistakes or pitfalls. Okay, so relying only on medical records. We talked earlier that medical records are important and they are, but that is not everything, right? We want teacher observations, attendance data, extracurricular limitations, school records, IEP records, 5 0 4 plans, anything that can show difficulty for that child to learn, to sustain pace, for attendance, anything that's going to show that they're going to meet that six area of domains, we wanna make sure we include. Medical records are obviously very important, but we want everything. If you have a nanny and your nanny wants to write a written statement, we wanna include that, right?

Anyone who knows and observes the symptoms that this person is experiencing, we wanna make sure we include that. Number two, not appealing a denial. If you don't hear anything from me this whole entire podcast, hear this, if you get a denial, [00:25:00] it is not over. Okay? You have 60 days to file an appeal and you should, and it is not over.

You have three opportunities to lose. You should file an appeal. When you get a denial, you have an opportunity to file what's called a request for reconsideration. If that gets denied, then you get an opportunity to file a request for hearing, which is where you get to go in front of an administrative law judge and you get to actually tell your story.

You should hire an attorney if you make it that far, but you wanna tell the judge your story, okay? And that is important. You don't wanna give up if you get a denial. The denial letters are very dry and they make you wanna give up, so just don't. Number three, not updating Social Security about changes. If you have a new physician, right, if you are seeing a cardiologist and they're gonna refer you to a neurologist and you already have a claim pending, your very next phone call should be to Social Security to let them know, hey, I have a neurologist [00:26:00] appointment. Because again, they have to go get those medical records.

And we wanna make sure that if the symptoms worsen, if your child was hospitalized, or if there's a new IEP plan that the child needs to follow that's more strict than the last one, we wanna make sure Social Security has that updated information. And number four is believing that they can't afford legal help. So Social Security attorneys, they work on a contingency fee basis. And this is not just our firm, this is all firms. Social Security sets the the mandate as to how much Social Security attorneys can make off of a case. There is a cap. So there is no upfront cost to filing for any of these or appealing for any of these.

So if you need help or are seeking help, I highly suggest you call and ask for help. There is no upfront costs and there is no fee unless the attorney is successful in the case.

Jill Brook: That's [00:27:00] really good to know. So can I ask a question? I think this might be a situation that comes up often. There's a little bit of this stereotype that seems to have something to it that a lot of dysautonomia patients tend to be kinda like high achievers and like very conscientious and hardworking. And I think there's even some data from Jeffrey Boris showing that even dysautonomia patients who maybe cannot attend school or have really a lot of limitations, they do on average find ways to finish school. And so I guess my question is like, what about somebody who does have all kinds of horrible symptoms, maybe they have to have all kinds of accommodations or do school from home and do it on their own time, and you hear stories of people who, you know, maybe they, they cannot concentrate, you know, maybe even 80% of the time, but they make it work. They find that 20% of the time and they do the work and they graduate and maybe they even get some good grades. [00:28:00] Does that count against them? Like do you have to have bad grades and bad performance in school?

Krysti Monaco: No, no, no, not at all. So remember, when Social Security is evaluating these claims, they're evaluating it based off of another child similar to their age or in their same position. And so when we're talking about an individual who has to have multiple accommodations and has to maybe do schoolwork from home or maybe get extra time to turn in that schoolwork, that's exactly what I'm talking about. That's the proof that we want to Social Security. It doesn't necessarily mean that they have to be D and F students, right, to show that they can't retain that information. But you know, that's something that at the hearing stage we get to talk about, right? We don't get to talk about it until we get there. Or that's something that we're gonna have the teachers write a letter like Ms. Jane does her work from home. She let me know she does it overnight because she sleeps most of the day, but she's still a really great student. We allow her two extra weeks for all of her, all of her assignments, [00:29:00] right? That's evidence that she has limitations in terms of turning things in on time that she needs additional accommodations.

So it's not necessarily that we have to prove that someone is incompetent, right? Because that's not the standard of disability. It's just that they have a difficulty doing things at a regular pace, right? Or as another child similar age, similar grade would. And so when they're getting those additional accommodations, then we wanna make sure that we're including it.

And that's the IEP plan. So that's an individual education plan, right? So that's what that's going to be, where they're saying, okay, you get additional accommodations. You have two weeks to turn in everything. You can do online work, you can do your online work in the middle of the night. Those are the types of things that we wanna give to Social Security. And honestly, I would argue that that's a good trait to have, right? The overachiever trait is a good trait to have because it's showing that you are, you're trying to be a contributing member of society, [00:30:00] but you need that additional help, right? And you have these additional limitations, which is all we're trying to prove.

Jill Brook: Okay, great, great. So how long does this whole process tend to take, and then like what happens when the child turns 18?

Krysti Monaco: Good question. So the process is a long process and I will not sugarcoat it for you. So, each stage, like I said, there's three stages, is taking about a year right now. And it is moving very slow. It is the government. So it's moving very slow. And that is kind of where representation comes in, right?

So on our end, we're making sure that the file is full and accurate and complete, so that by the time somebody at Social Security picks up the file and is going to review it, they have all of the information that they need. They can make a decision, right? They don't have to go get additional information and delay it any further.

So it is a long process and, and I usually tell anybody who calls my office to buckle up 'cause it's long [00:31:00] and I don't wanna give any false expectations of, of when it's going to get approved. And then if it gets approved earlier, then we're all happy and we're living in a cloud of rainbows. But, realistically it takes a really long time. It could be anywhere from one to three years. And then what happens, so let's say our child gets approved for Social Security benefits and they turn 18. Well, what happens is they get reevaluated and they get reevaluated under the adult standard. Now, sometimes it will just transfer straight over, right? They won't even do like a formal evaluation. Other times they will do a formal evaluation, right. Now, there's not gonna be any past relevant work, like I said before. However, they're gonna switch from looking at those six area of domains to now looking at whether or not there's any job that exists in the national economy that they believe this individual can do as an 18-year-old.

So talking things like nuts sorter, eye glass assembler, surveillance system monitor, things like that [00:32:00] that we would argue don't even exist anymore. And that's, that's a huge milestone, right? When you have that recertification under the adult standard. So that's also a good, a good point in time where you're gonna wanna engage in counsel, even if it's just for questions, because it is now a completely different criteria than what you previously went through when you're filing for SSI benefits.

Jill Brook: Okay, great. All right, so I think you've mentioned two times when you'd recommend somebody engage with counsel. One is if they're going in front of a judge after two denials, and then this one that you just mentioned. Are there any other times when you would recommend that people get the help of an attorney?

Krysti Monaco: Sure. So I get this question asked all the time, and I always wanna answer this question without seeming like we're just trying to get clients, okay? So I always like to tell people that calling to ask questions is the best thing you can do. Regardless of if you hire an attorney, you should be well-informed about what you're stepping into.

And so [00:33:00] most attorneys including our office, will answer questions for free. There is a free consultation. We will answer questions that you have if you're thinking about applying or thinking that this might be for you. And so you should always go into a journey like this well-informed. That's number one.

Number two, I always think that when we're fighting the government, which we are in these cases, that you need help. That the government is oftentimes underpaid and understaffed, and they don't have the capacity to get things done for you like a private attorney does. And so I would say you should do it as soon as possible, even if it's just seeking advice, right, because you want to be well-informed. But I would say for non-negotiables, you need a, you need an attorney at the hearing, right, because that is important, that is, that is your one last shot to make sure that everything in your case, all your ducks in a row, all your T's are crossed and your i's are dotted.

And to really tell your story in an accurate manner that's going [00:34:00] to hit the rules of Social Security that you're applying for.

Jill Brook: Okay. Yeah. Yeah. So where can people find you online if they wanna learn more?

Krysti Monaco: Sure. So we have a fantastic YouTube channel. Let's start there because everybody likes to watch videos. So on YouTube, we're just Cavey Law, so C-A-V-E-Y-L-A-W. We have over 2000 videos. And so they can find us there. Every video links to our website. So our website has tons of information, or if they like personal interaction and they wanna actually tell me their story and ask me questions, they can call the office.

You know, we have staff that will answer the phone. If I'm available, I will take the call. If not, they'll schedule a call with me and they can ask me any questions that they'd like.

Jill Brook: Wow, that is a generous offer. That's fantastic. And we'll put those links in the show notes and for anybody who's interested, you know, Nancy Cavey's episode just a couple weeks ago also has a bunch of links in the show [00:35:00] notes including to her podcast and she has written a number of pamphlets and books, including ones specifically about POTS.

And so, we'll put all that stuff in in the show notes as well, 'Cause you know, I guess everybody who is thinking about doing this as a child is probably not gonna be too long before they have to go through the adult version of it too. But you are optimistic that, that there's dysautonomia patients out there who can qualify, can get these benefits and it might be a horrible long process, but eventually they'll be there and they'll have the security.

Krysti Monaco: I mean, the process is long and overwhelming and, and I mean, you're already dealing with enough, you know, aside from dealing with Social Security. But yeah, I'm optimistic. I think that, I mean, I think you and I had a conversation earlier about how hard it is to get diagnosed, you know, with dysautonomia, any of the various conditions.

And so I think one of the main things to remember is that it's not really about the [00:36:00] diagnosis. So a lot of times I get calls and it's, hey, I have all these symptoms, but I haven't been diagnosed, so I'm not ready to file. And I always say I don't care what your diagnosis are, right? I'm looking at your symptoms and the impact they have on your functionality.

And so I think that that's encouraging, right? And, and I think it's encouraging to a lot of individuals suffering from dysautonomic conditions just because it is so hard and it takes so long. It's like they try to rule out every other possible condition that it could be before they really try to hone in on a, on a dysautonomia condition.

So, I mean, I'm optimistic. We've taken a lot of cases in front of judges with dysautonomia and we do a really good job of also educating the judges on these types of conditions. And so, you know, I'm optimistic enough to come back and kind of just like tear our practice apart and add this, add this in.

So yeah, I mean, I think that, I think it's important for people to be heard. And ever since that 17-year-old girl came to me, now [00:37:00] I'm really making sure these children are heard, so.

Jill Brook: Oh, that's so fantastic. Well, thank you for learning about dysautonomia. Thank you for caring. Thank you for putting your job on the line. You don't get paid unless you succeed, so.

Krysti Monaco: Yeah.

Jill Brook: So that's amazing. Wonderful. Okay. Do you have any final words for people today?

Krysti Monaco: Yeah, I just wanna tell people, you know, this is a long process. It's overwhelming, it's confusing. The best thing you can do is stay proactive, right? Re-watch this episode and take some notes, keep records, communicate with your doctors clearly. Get school records, communicate with the schools, and don't hesitate to ask questions.

Be like the 17-year-old girl who sat me down at my booth and talked to me for 45 minutes. That's the best thing that you can do. At the end of the day, I think that supplemental security income can make a huge difference for families providing financial stability, access to the care of your child's needs, and I think that it's, it's worth it to go for.

Jill Brook: [00:38:00] Awesome. Well, Krysti, thank you so much for your time and your expertise and your compassion. We are so grateful.

Krysti Monaco: Well, thank you so much for having me.

Jill Brook: Okay, everybody. That's all for today, but thank you for listening. Remember, you're not alone, and please join us again soon.