Navigating Disability Insurance after a Brain Tumor Diagnosis

Hello, welcome back. We are going to wrap up our program with our last session of the day, and I'm going to invite Dr. Claus to introduce our speakers. Thanks, Emily, and thank you all for staying with us. I hope you're enjoying the program. I know I am loving every minute. So I wanted to introduce our next speakers, and a part of why we were interested in presenting this topic is certainly it is something our patients ask us very frequently, and many times I find that they just sort of give up on the topic and don't know where to go next. And I was recently at our annual neuro-oncology meeting and noticed that our two next speakers, Dr. David Schiff and Drew Yankes, had a really great poster presentation on this topic, and I thought, well, this would be wonderful. So today's speakers are Dr. David Schiff, who I've known for many a year. He is a professor of neurology at University of Virginia, where I actually got my master's degree, and is co-director of the University of Virginia Neuro-Oncology Center, and actually has a long history in working in low- and high-grade glioma, and serves on the National Cancer Institute Brain Malignancy Steering Committee. And he's joined today very nicely by Drew Yankes, who's a disability claims representative with expertise in this particular topic and the two of them have been working and developed actually a very nice publication that will soon be available to all of you for free on the topic. So thank you to the two of you, too, for joining us today. I'm Drew Yankes with disability claims representatives, and for the last 25 years, I've been working with cancer patients. And one of the most difficult disabilities that I have to deal with are the low-grade gliomas, because they are not a categorical disability for social security. And we'll get further into that in a little bit. Dr. Schiff has a presentation that goes on before what I'm gonna be talking about. But while we're working on that, I'll just get down to, if we can, to the slide number seven, if that's possible. Social security is a difficult program to navigate. We think that it is very easy and very user-friendly and social security has made a lot of changes in the application part of it that is better for some people, but not for others. A lot of people's applications are not completed properly, which then delay the process for getting disability through. There are eligibility limits that sometimes preclude people who think they should be eligible and are not because they have not paid in the system over the last 10 years, or they haven't met their original 40 quarters. And even with a categorical disability, you cannot get social security disability unless you're eligible. Now, with our low-grade gliomas, some of the tumors are very slow-growing or benign or are not meeting the criteria for a grade three. And with the grade twos, it is possible to get social security disability. It just takes a little bit of work, just as it is with every other disability. And we can reduce functional capacity and the ability for someone to be able to meet the criteria for reduced capability. There are two different programs for social security. One is social security disability income, and the SSDI benefits are based on five full calendar years out of the last 10. Supplemental security income is basically a welfare program under social security that is for folks who have not paid into the system or have never worked or a stay-at-home mom, whatever. It is a program that you have to meet eligibility financially for it. Medically disabled patients who previously worked can get disability and if they have not worked, can get SSI, supplemental security income. You can see the limits on here with the benefit area of the slide. One of the big things that I try to deal with with all of the patients that I deal with, with any type of disability, is to try to reach the patient prior to or right at the time of diagnosis. What folks don't realize is that when they go out on short-term disability or long-term disability from work, they're capped out at 60%. And when you are upper income and you are looking at a 40% decrease in your salary, it's a major financial burden on the patient. I try to work with people not only on disability, but to give them a good circle of care that also includes helping them figure out how to balance out their budget in order to be able to go on to disability before leaving work. The maximum that you can get on social security disability is only $3,627. And you have to be very upper income for a very long time to reach that goal. If you're on 60% of your salary from long-term disability, that amount of money is not added to your long-term disability, it is offset. So there is a big financial burden in going on social security. In order to be eligible, even if you have your 40 quarters, you have to have your 40 quarters in order to be eligible for any retirement or survivor or disability benefit. But you also have to have paid in five full calendar years of the last 10. And that's where a lot of the miscommunication comes in where we're telling people, oh, go apply for disability, you will get it. You don't get it until you're eligible. And the eligibility is one of the factors that we see a lot with ungrateful or gliomas where it is a compassionate allowance, but it is not a compassionate allowance unless you meet the eligibility requirements, which is the five out of 10. Drew, this is David. I think you can all hear me now. Maybe if we go back to the beginning of the slide presentation, and I appreciate your filling in. First of all, I wanna thank the organizers and Dr. Clout. This has been very inspiring for me to listen to for the last couple of hours. And so I'm really honored that Drew and I have been asked to participate. Drew and I have worked together, Drew doing the heavy lifting for many years for patients with low grade gliomas. And it's often been a, it was sort of a rude shock for me to see that patients who clearly were disabled from my perspective were struggling with a social security disability. And these are Drew and my disclosures. Next slide, please. So as you know, many patients with low grade or grade two gliomas, I'll use those terms interchangeably can work, but many are not able to work. And there was actually a Swedish study of it published a few years ago. They took about 400 patients with low grade gliomas and they compared them to 1900 patients who were of similar age, similar gender, similar geographic location and looked at their employability. And one year before the diagnosis of low grade glioma, about 90% of the patients and 90% of the controls were employed. One in two years after later, still about 90% of the patients without low grade gliomas were employed, but only 52% of the low grade glioma patients were employed one year later and 63% employed at two years later. And not surprisingly things like receiving radiation, receiving chemotherapy, being older and having worse performance status were risk factors for being unemployed. Next slide, please. So why can't some patients with low grade gliomas work? And see, there are several factors. Seizures are a big one, about two thirds of patients with low grade gliomas will have seizures and of those, about a third of them will have incomplete seizure control despite best efforts with the anti-seizure medicine. So that's a big factor. The cognitive effects of the tumor and the treatment as Dr. Weir-Jamora very nicely outlined earlier, side effects of medications, including anti-seizure medicine. And as Dr. Weir-Jamora mentioned, mental fatigue and depression are extremely common in this patient population as was recorded in the study from the Netherlands. And in the patients who do return to work, about a third of them will have real difficulties, including concentration problems and slowed task performance. Next slide, please. So we all know that low grade gliomas, they're not in general, frankly, benign tumors and that adult gliomas are on the spectrum of aggressiveness from grade two to grade four. And the distinction between grade two and grade three is actually somewhat subjective as I'll come back to in a moment. But as I think Drew was saying while I was trying to log in properly, Social Security Administration categorically differentiates the grade twos from the grade threes and the grade fours. The grade three and fours qualify basically pretty much immediately as a compassionate allowance, but the grade twos do not. And so if you're a patient with a low grade glioma, your disability claim, in your disability claim, you have to prove decreased functional capacity to qualify. And this is really crazy. If you heard Dr. Peruzzi's talk, which summarized the classification system, it's clear that with the inclusion of molecular features in our classification system as we have now, the prognosis of grade two tumors, while it's better than that of grade three tumors, it's only modestly better. It's not light years better. And in fact, board certified neuropathologists will disagree on whether something's a grade two or grade three about 30% of the time. Moreover, up to three quarters of patients with grade two tumors eventually will have their tumor tuned into a grade three or grade four. This typically takes years and years, but it still happens. MRI may suggest this, but the only way to prove it is with repeat surgery, and repeat surgery is often not appropriate. Complete a proof that the tumor has upgraded. Next slide, please. And so this is where I turn things over to where Drew came in before. And Drew, I don't know if there's anything else you wanna say about this slide, or if not, we'll go on to the next slide. Thank you. So you're eligible to apply for a social security disability insurance. As Drew said, if you've worked for at least five of the last 10 years and paid social security, and if you didn't meet that qualification, you may still qualify for supplemental insurance. Your monthly earnings have to be less than about $1,500 a month, and your condition has to interfere with work-related activities. But this is something that's going to be scrutinized when your case goes for medical disability determination. Next slide, please. So what actually happens in this application evaluation, there's a review of all documented physical, neurological, and cognitive symptoms and deficits. And I highlighted documented because if it's not in the chart, if it's not written down in the application that social security administration receives, they can't give you credit for it. Additionally, they don't judge whether you're able to return to your former job. So their guideline is really, can the person do any sort of work? So if you were a neurosurgeon, or rocket scientist, or ballet dancer, and now you're still able to bag groceries, you may not be found to be disabled. They do cut you some slack if you're over the age of 60. And if you're 67 or older, you qualify for social security retirement benefits. And I think it's worth noting, you may still be eligible for disability through a previous employer. Next slide, please. So what can the healthcare providers do to try to improve your chances? And what should they avoid to help improve your chances as well? Well, they should recall that if your tumor has upgraded over time to a three or four, you now meet the compassionate allowance criterion. It's important for the documentation notes to comment upon tumor progression or treatment failure, because this is helpful in qualifying. It's important to document any reduction in functional capacity, and referrals are often appropriate. You mentioned social workers, because in general they have a much better understanding of the disability process than clinicians like myself. Neuropsychologists can help patients undergo cognitive testing. They can document cognitive deficits that make people unable to work. Epilepsy referrals can help document seizure frequency despite good compliance. That can be helpful in gaining disability. Ophthalmologic evaluation can document vision problems that can affect disability application as well. And much as doctors and healthcare providers like to see their patients as able and doing well, those sort of pat phrases are not necessarily helpful, particularly if they're not accurate. Similarly, we're not given, the healthcare providers don't get to make the determination of who's disabled. So it really doesn't help if I dictate in my notes, patient is disabled. And finally, with the advent of electronic medical records, it's very easy to copy and paste prior history and physical exams. But if they contain outdated information and they don't comment upon new deficits or symptoms that the patient's having, it doesn't do the application any benefit as well. Next slide, please. And I think before we open things up for questions, I've included Drew's email on this slide for questions that are beyond the scope of this presentation. And as Dr. Klaus mentioned, our former fellow, Dr. Yogendran, Drew, and I put together a publication on this topic that I think is open access now. So if you go to this website, if you're interested, you can pull that up as well. So I'd like to thank the audience for bearing with the technical difficulties and Drew and I are going to take questions. Take a few reiterated disability process, if that's okay. One of the big problems that we have when we're dealing with low grade glioma is the medical records are usually geared to the glioma. And in order for us to get social security disability, we have to bring in other departments in the hospital neurology. We need to bring in the epilepsy department. We might need to bring in psych, whatever the patient is feeling. Excuse me one second, let me see if I can figure out. I'll just talk louder, is that better? When the oncologists are focusing only on the glio and we're looking to expand to other doctors in the hospital to get other medical documentation, what we're actually doing is we're moving away from the medical listing at disability determination services for the glioma. And we're then looking at adding in cognitive impairment through neuropsychological testing possibly. We'd have to meet the listing for epilepsy if they have a seizure disorder. So a lot goes into it and one of the biggest problems that we have nationwide with social security disability is there's very few of us that are out here advocating for people for pay or not for pay that will work with the patient who's on the initial claim. Reason being is there's a five month federal waiting period where social security does not pay benefits. So a newly diagnosed patient is not going to be picked up by anybody that is going to really help them until they've been denied at least once so that there's now past the five month waiting period. Another thing also, I noticed a question earlier about congressmen and going to congressional for help. Congressmen don't have the ability to make the medical determination. If you go to your congressman, all they're going to do is write a nice letter, send it to social security, they'll send back the status and then we'll move on from there. The time congressional goes, going to congressional is very helpful if things get tied up in the payment system and that would be after the medical determination is made. So we can go now to questions if there are any. Thank you both so much. Just as a reminder, if you have a question that you'd like to ask, please type and submit it using the Q&A button on the bottom of your screen and we'll answer questions as time allows. All right, so one of the first questions we have here is asking how often are social security disability benefits reviewed after you've already started receiving those benefits? Yeah, go ahead. It all depends on the diagnosis and the age. If you're over 60, not so much. If you're between 50 and 60, you could be reviewed three to five years. And it all depends on how you have been determined disabled. If you are in grade three or grade four, you might never be reviewed. If you are a three or four, it might be a five year review or a 10 year review if you're very young. Thank you so much for that insight, Drew. Dr. Schiff, can you share any keywords or phrases that patients' providers should be including in their medical notes to document their disability that might be able to help strengthen their case? I don't think there's a specific keyword. I think it's important to document seizure frequency if the patient has seizures that are not completely controlled. I think things like hemiparesis, a weakness on one side of the body, a visual field deficit if a tumor is in the visual pathways of the brain and produces a hole in patient's vision on one side or the other. Those are very important things to document. As Drew and I alluded to, cognitive testing can be very useful in showing that a patient's memory and concentration is not good enough to be able to hold any kind of a job. So I think those are probably the main things in the physician's notes, as well as commenting on whether, in the situation where the tumor is not completely under control, making that clear in the records. I could add on to that. One of the major problems that we have with a lot of the notes that are being written is using the terms like very stable, doing well, tumor is not progressing, and not looking at or adding into the note their observation of functional capacity, their physical capacity, and downplaying the severity of their symptoms. And that would probably help a lot of people if the notes are written concisely and depicting the severity, not necessarily how good the patient's doing, but how bad the patient's doing. Also, duration, keeping track of what is in the medical record and being transposed from record to record to record. A lot of times the information becomes old or stale, and the medical record is saying that the patient is still working when they're not. Thank you, Dr. Chaffin. Thank you, Drew. Go ahead. Yeah, no, I was just gonna reiterate what Drew said. We like to think our patient is doing well. And, you know, as doctors, just as like with patients and family members, we're so relieved when we pull up the MRI and things look stable. And we, you know, we sometimes sort of forget about everything else. We just keep that sigh of relief. But that belies the fact that patients may still be struggling in many other aspects of their life in terms of their functional status. Thank you so much for that insight. Another question we have here is asking how frequently should a patient have neuropsych evaluations with LLG, with low-grade gliomas? Only if they need it. Number one, if they are having cognitive issues. Normally insurance companies and Medicaid will only pay for it once a year. There are instances where patients have had a neuropsych and then three months or four months later, something happens, they have a seizure or whatnot. And it's apparent that there is a decline. We can still get a neuropsych done at that point and get it paid for, but normally one to two years. Disability will accept a neuropsych up to three years old. Thank you, Drew. We have a question here about preexisting conditions and how that can impact a patient's eligibility for long-term disability. Drew, maybe can you touch on that a little bit and how we can work around that? With the Obamacare and we're giving health insurance with no preexisting condition, people don't realize that short-term disability through your employer will not be affected by a preexisting condition, but long-term will. And there is almost no way around it. The long-term insurance companies scrutinize the conversion from short-term to long-term very carefully. And one other thing that happens is that employers change insurance companies thinking they're getting a better deal, even though the employee has been with the company for 10 years. And nine years into their employment, they changed their long-term benefits and they are now diagnosed. They're not eligible because it's preexisting to when the policy was written, not when they became employed. So that is a very critical thing. And employers, if any of you are out there doing HR, changing the long-term care or long-term insurance policy is quite dangerous for the person who is then subsequently gonna be diagnosed with something and they'll be denied. And then we get into the balance between the 60% of income versus the 3,600 maximum. Thank you so much for that insight. We have a question here for younger patients or patients who may just be starting their careers, starting to apply for jobs. How can having a brain tumor diagnosis impact that job search or potentially getting insurance later on after they've already been diagnosed with a tumor? Well, they'll always be able to get health insurance. There is no preexisting condition there. There again, it won't affect short-term disability, but it will affect long-term disability. One of the things with young people is their functional capacity is looked at much more strictly, especially with the grade two, because they could live for five, 10, 15 years and be productive at work and whatnot. So for the younger folks, they have to be with very reduced functional capacity to get through. We do get them through. I have gotten folks that have had different types of cancers and different types of neurological disorders. I've got them approved while they were as a child on SSI and then as adults, as young as 22, 23 years old. But age does play a factor because of functional capacity. But it will not affect their insurance. Thank you so much for covering that. Aside from disability and supplemental income, are there any other forms of monetary support that patients can benefit from? Unfortunately, not really. The pharmaceutical, most pharmaceutical companies will offer drug assistance to certain people, mostly uninsured and mostly without Medicare benefits. Medicare benefits are not paid for by pharmaceutical companies. They won't give them the advantage of the assistance. But with social services does have in certain local areas, it's all specific to state, different types of financial assistance that might be given to low income disabled or middle income disabled. They have heating assistance and stuff like that. But for monetary, the only other monetary assistance that's available, I guess, countrywide would be temporary need for, temporary aid for needy families through Department of Social Services for families with no income. Thank you, Drew. I think we may have time for one more question and maybe we can get both of your perspectives on this one. What proactive steps can you share with our audience today on how they can maximize their benefits? Wow, that's a good question. You really can't- I'm glad Drew is taking that one. You really can't maximize your benefits. Your benefits are your benefits. And this is something that I counsel everyone I deal with, with all the different diagnoses that we have out there. Unfortunately, social security is finite. Long-term and short-term disability are finite. VA benefits are finite. So you are applying for things and trying to meet the criteria for things, but you are not gonna get more or less for the same benefit. I have people calling me up saying that, well, I have a brain tumor, but I just got diagnosed with ALS. Can I get more money? No, you're gonna be at the same amount of money, but there are other benefits that you might have with the dual diagnosis. In terms of maximizing your opportunity to have benefits, you need to have trained advocates to help you. Applying for benefits and knowing what the benefits are is a mystery to most people who become disabled. Most social workers now at the hospital are geared to hospital social work. They are not involved in outside sources or they're not proficient in them because they don't work with them. They work with the hospital team. Finding an advocate or advocating for yourself directly with the person who has the ability to sign the check, basically. Don't call a call center like Social Security's 800 number. Call the local field office. You'll get better information and you'll get more concise information. Contacting your local congressman there, you're only gonna be able to get you status. Finding community action agencies and your board of aging and your local community advocates, they might not know the answer, but there again, they're gonna know where the answer is. So that would be the way to maximize your benefit is to get yourself exposed out there with people who know the whole system. Thank you so much. That is all the time that we have for questions. Thank you again, Drew, and thank you, Dr. Schiff, for your presentation and your thoughtful responses. I'm gonna turn it back to Emily. I could just say one more thing. Anybody who needs a consultation, you have my email. I'd be more than happy to talk with you. Thank you so much, Drew and Dr. Schiff. We really appreciate the two of you being able to share on such a complex topic for our audience members. This now concludes the ABTA's Adult Low-Grade Glioma Patient and Family Meeting. As a reminder, today's meeting has been recorded and will be sent out later next week along with some helpful resources. We hope each of you gain some new insight and helpful resources from the meeting today. Before we go, we would love if you could help us to understand if you have learned something new today by responding to this last poll. For those of you that were a part of our program in the beginning, we did ask this question for each of you to rate your understanding of adult low-grade gliomas. Now that you've had some information, you've heard from our speakers, we would like to kind of gauge if you have been able to improve your understanding. So with that said, I am going to launch our last poll. All right, please rate your understanding of adult low-grade gliomas. So part of today's call earlier, majority of you said it was 48% said general. So I think the goal is to definitely increase from this morning. All right, so we have increased our understanding. If you see here, great has 58%, which is definitely an increase from earlier today. I hope that each of you have been able to learn some more. And of course, we will have that recording for you as well for each of you to take a deeper dive into today's meeting. Thank you so much for participating. We invite each of you to stay connected with ABTA through our programs, resources, and services. Visit us at abta.org, sign up for our monthly newsletter, Mind Matters, or connect with the ABTA through any of our social media channels. We also encourage you to take a few minutes to complete a brief survey to evaluate today's meeting by scanning the QR code on the screen using your mobile device. Your feedback is important to us as we plan for future programs. So just feel free to take your phone, go to the camera button and hover that over the QR code and it will prompt a link. Click on that link and a survey will pop up. Your feedback is truly important to us so we are able to bring you quality educational programming. I would like to thank our Program Planning Chair, Dr. Claus, for all of her time, effort, and leadership in putting together this incredible program. So with that said, I'm gonna hand over to you, Dr. Claus, for a few closing remarks. So thanks very much. I will be brief because I know people are probably tired. I appreciate all the speakers who worked with us today, giving up their time on Saturday and offering great insight into important topics for low-grade glioma patients. I appreciate the American Brain Tumor Association supporting this effort to bring additional information to this generally underserved group of patients. And in particular, we appreciate all the lower-grade glioma patients, their caregivers, their supporters. I hope with this day today, you feel that you are seeing that even if slowly things are moving forward, we hope you'll join with us in moving things forward. Please feel free to contact me at glioma at yale.edu if you missed out on anything today. And we'll be sending out an email with some of the links. And also the American Brain Tumor Association, as mentioned, this webinar is recorded. All that information will be sent out to you so you'll have all of that available to you. And we'll help you pass it on to others who maybe weren't able to come today. So thank you one and all, and back to you, Emily. Thank you so much, Dr. Claus. I echo your remarks in thanking all of our speakers and our audience members for joining us today. Additionally, thank you to ABTA sponsors, our series sponsors, Genentech and Novacure, and our silver sponsors, GT Medical Technologies and Medexis Pharma for their support of this meeting. Without the time and effort from each of these individuals and organizations, we would not be able to bring you this quality educational programming that has brought together the brain tumor community. And most importantly, thank each and every one of you for joining us today. If you're looking for more content like this, please check out some of our free upcoming events, such as our webinar, which will be featured a similar topic that Douglas Fair shared earlier on fertility and family planning. This precedes that, which is on sex and intimacy after a brain tumor diagnosis taking place April 18th. Additionally, our national conference will be taking place on September 8th and 9th, and it will be available in person in Chicago, as well as online. Registration opens in the spring. Thank you again for joining us and enjoy the rest of your day.