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Welcome to Connecting ALS. This week we discuss the fight to make sure veterans' spouses have access to the benefits they deserve.
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
This transcript was exported on Oct 25, 2022 - view latest version here.
Jan Vasiloff:
I would like to emphasize, I think it's a distinction that needs to be made. We are not asking for something new for these families, we're asking to be given what other families with other diseases already get.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host Jeremy Holden. On September 23rd, 2008, the Department of Veteran Affairs established ALS as a service connected disease. In doing so, the VA made it possible for veterans who were diagnosed with ALS to receive compensation based disability, grants for housing and or vehicle modifications and much more.
While disability compensation is tied to a complex formula based on the degree of one's disability, the VA in 2011 stipulated that all veterans with ALS who qualify for service connected status would be eligible for the maximum benefit regardless of the progression of the disease or whether or not a veteran is totally disabled at the time of their evaluation. The disability rating is used to calculate monthly compensation payments and eligibility for other benefits. The 100% disability rating means that veterans will receive a higher level of compensation from the start, helping to speed access to benefits and decrease the burden on veterans and their families.
Service connection also qualifies a veteran for enrollment in the VA healthcare system, which provides coverage for medications, equipment and other health services. A veteran's spouse and dependents may also be eligible for benefits, but a quirk in the law governing survival benefits means that spouses of veterans are being denied access to survival benefits after they lose their loved ones. Joining me to dig deeper into this subject is Daniel Kramer, Associate Director of Congressional Affairs at the ALS Association. Daniel, thanks for being with us this week.
Daniel Kramer:
Thank you so much for having me, Jeremy. Really enjoy the opportunity to talk about this important issue.
Jeremy Holden:
Yeah. Well, you've done so well when we've had you in the past. Happy to have you here this week. So, let's just start with a basic description of what we're talking about here. What is survivor's dependency and indemnity compensation?
Daniel Kramer:
Sure. So dependency and indemnity compensation or DIC payments, are monthly benefit that's paid to eligible survivors, which includes spouses, children, or even parents of United States Military Service Members who died while on active duty, or veterans who died as a result of a service connected injury or disease such as ALS. These benefits have multiple levels that are commonly known by the Department of Veterans Affairs and those on the Hill as boosts. These boosts provide survivors with a larger monthly benefit, so long as there are certain parameters met as it regards to the veteran's disease or disability.
Jeremy Holden:
So now, despite the fact that ALS is a service connected disease with a 100% disability rating upon diagnosis, surviving spouses in our community have been unable to access their full DIC benefit. What's going on there?
Daniel Kramer:
Yeah, so that's absolutely correct, Jeremy. So, one of these boosts that's available to survivors depends on a criterion that the veteran who had a service related disease or a disability that is defined as totally disabling, lived with that disability for a period of eight years. Now, the ALS Association and the Department of Veterans Affairs have tied an increased incidents of ALS to military service, as you said at the top of this podcast.
The groundbreaking report ALS in the military showed that military veterans, regardless of the branch of service, regardless of the era in which they served and regardless of whether they serve during a time of peace or a time of war, are at greater risk of dying from ALS than if they had not served in the military. And as you said in 2008, the VA established ALS as a service connected disease.
So under the parameters for this boosted benefit, those survivors of veterans who have ALS should qualify. But the elephant in the room here is that the life expectancy currently for those who are diagnosed with ALS is two to five years. I mean, my mom had ALS and she passed three months after her diagnosis. So it really just goes to show you that the life expectancy for ALS doesn't pair with that eight year survival requirement to get the boosted benefit. So in my eyes, this is really just an issue of fairness. This requirement is unfair for the families of veterans who have ALS and we think the requirements should be changed, so those with ALS are treated fairly in all aspects of VA healthcare benefits and services.
Jeremy Holden:
It's a pretty simple math to see and kind of understand how that eight year requirement doesn't add up for the ALS community. You talked about the association's position that this should change. So talk to us a little bit about what that change looks like. What is the association doing now and in recent years to try and fix this problem?
Daniel Kramer:
Yeah, so the association's been working closely with the Paralyzed Veterans of America on a bill that's currently moving through Congress called the Justice for ALS Veterans Act. The bill would take this fairly complex issue, but fix it quite simply. The Justice for ALS Veterans Act would codify that the survivors of those veterans who are diagnosed with ALS as a result of their service, receive the full DIC benefit regardless of how long their loved one lived with the disease. So the policy team here at the association, including myself and Denise Balen, are working the halls of Congress now to try and get this bill through. We saw it get out of the Veterans Affairs Committee almost a year ago now, but it's been stalled and it hasn't been reported to the house floor for a vote.
Now we're further in the process than we have ever been getting this bill through Congress and we need to keep pushing for it to pass by the end of this congressional session because we have a new Congress coming in. And if we don't, we lose all the progress we've made on it so far. We have a lot of people who listen to this podcast. So, if those listeners listening now want to help move the legislation through, we'll be sure to drop a link in the description for this podcast and it'll link to our action center where listeners can take action and contact their representatives and tell them the way that their law is currently written is unfair to those with ALS and it's largely unattainable for survivors of veterans who have ALS and we want you to move this bill through.
Jeremy Holden:
Absolutely. We will definitely be sharing links in the show notes so folks can take action. Daniel, thanks for coming by and walking us through the Justice for ALS Veterans Act and why it's needed for the community.
Daniel Kramer:
Of course. Thanks, Jeremy.
Jeremy Holden:
Well, I had an opportunity recently to sit down with Jan Vasiloff about her experience to try and access her benefits after she lost her husband and her advocacy to fix the existing system through the Justice for ALS Veterans Act. Well, Jan, thank you so much for being with us this week on Connecting ALS.
Jan Vasiloff:
I'm happy to be here.
Jeremy Holden:
Yeah. Well, before we get into the kind of nuts and bolts of a public policy fight that you've been a part of, I want to give you the opportunity to introduce yourself to listeners and tell us a little bit about your connection to ALS.
Jan Vasiloff:
Well, my name is Jan Vasiloff and my husband was diagnosed with ALS in September of 2013. He exhibited symptoms in April or maybe a little bit before that of 2013, so he was actually diagnosed fairly quickly. Oftentimes it takes a lot longer to diagnose the disease. He lived 23 months, he died March of 2015. And because he was a veteran, that opened a whole new world to us for the care and the benefits and so forth.
Jeremy Holden:
As many listeners are aware, ALS is a service connected disease. And then you mentioned that opening doors. Talk to me a little bit about your experience with the VA and the healthcare that that provides and just kind of that system.
Jan Vasiloff:
When he was diagnosed we lived in Spotsylvania, Virginia. And so our VA was Richmond McGuire, is the name of the Richmond Hospital. And they were wonderful. Once he was diagnosed, we were put in touch with the ALS Maryland, Virginia, DC chapter of the ALS Association. Through them, we had an advocate who came to the house to talk to us about the disease and what we were facing. And one of the first things she said was, "Are you by chance a veteran?" And George said, "Yes." And she said, "Well, then that changes everything." Nothing about the disease itself, but about how the treatment and so forth or what was available to us. So, McGuire was our hospital.
We went down there for our first appointment and that was really not to see the doctor but to walk us through the system. And the first place that she took us was to the PVA office, which is located within McGuire's facility, that's Paralyzed Veterans of America. And from that point on, they handled everything for us because it's a veteran's hospital that that connection is there. They did all the paperwork, they did everything. And then they made the appointments for us to see the neurologist. When I say everything, I just mean everything. When it was time for him to get a motorized wheelchair, it was all handled by them, all the appointments, because you go through a lot of different appointments. Speech therapy, occupational therapy, physical therapy and so forth, not just neurology. So that was a true blessing because we really were going in blind, we had no idea what was available to us. And that would've been a much longer protracted situation for us had it not been for PVA.
Jeremy Holden:
Yeah, I hear echoes in other conversations I've had with people who had access to the VA health system and just how tremendous that support is and the level of care. We can share a link in the show notes for some work that's being done to try to even expand that access to VA care for people living with ALS. And Jan, you became engaged in advocacy around a bill that is before Congress right now and that is the Justice for ALS Veterans Act. Talk to me a little bit about how you came to understand the problem that this bill would address.
Jan Vasiloff:
After my husband died, being the surviving spouse of a hundred percent disabled veteran, I was entitled to DIC, the compensation for surviving spouses. And I was told by, it was someone at VA, or it might have been PVA, that I don't remember. But that in addition to the monthly stipend, I would also get what at the time they referred to as an added death benefit because he was a hundred percent disabled and did die of that disease. Well, that never arrived.
So, I looked into it thinking it was a mistake and then came across, under the benefit section for surviving spouses, that in order to receive that death benefit, the added money, the veteran had to have had the disease at a hundred percent disability for eight years prior to death. So we didn't qualify as my husband only lived 23 months. And having learned a lot about ALS, I knew most veterans weren't going to qualify because the average lifespan is three to five years, falling far short of that requirement. So I thought this was not good because it meant that veterans who lived eight years, no matter what the disease, they were getting, their families were getting this extra stipend that wasn't open to ALS patients who did not live eight years, which most do not. Only 10% of the population, veteran or not live longer than 10 years with ALS, 90% die within three to five years of diagnosis.
Jeremy Holden:
A statistic certainly familiar to many listeners. So, how did you go about trying to get this rectified?
Jan Vasiloff:
Well, I first made sure that I was understanding the benefit or the lack of the benefit correctly. And then, I first went to my congressmen, to their office. Because I knew it was going to make a change, it had to go through Congress because the rules are set by Congress for the VA. So I didn't know where to start, so I started there. And that didn't provide me with what I needed. And then, I met somebody who worked for the VA and said that I had to fill out this form from the VA telling them what I wanted and requesting an interpretation of the benefit, basically. I had to jump those hoops knowing what the outcome would be. But I did that and sure enough it came back and said, "We understand what you're talking about, so on and so forth, but to change this law, it takes an act of Congress."
But I had to have that in hand before I could proceed because that document, well, it really was emails back and forth, it wasn't a document per se, but PVA needed that from the VA stating I had applied, if you will, and been denied and that the law had to change. That gave us the basis for coming up with a bill.
Jeremy Holden:
Is that now you're able to demonstrate the harm that is being done by the law the way that it currently exists.
Jan Vasiloff:
Yeah, I thought of it at the time and still do feel that it is something, that it was an oversight when the law was written. How they chose eight years, I don't know. But that they certainly, anybody with knowledge of ALS was not part of that discussion, let me put it that way.
Jeremy Holden:
Sure. Sure.
Jan Vasiloff:
Because they would've known that the majority of people aren't going to qualify for that eight years. So, I chose to look at it that it was an oversight and that it was something, a fall between the cracks, if you will, but something that needed to be and in my estimation corrected.
Jeremy Holden:
Sure, yeah. I mean, an oversight can still cause harm, it doesn't have to be that this was done maliciously. I think to your point that there-
Jan Vasiloff:
Correct. Right. Right.
Jeremy Holden:
... Presumably no one in the committee drafting the laws it currently exists, was familiar with ALS and the way that it works. When did you first bring this to the attention of PVA and your member of Congress?
Jan Vasiloff:
Meeting with Congress offices and so forth, actually it was Aids that I first discussed it with. I'm going to say it was maybe the fall, summer of 2015. Then I decided that this was worth looking into, seeing if we could get this rectified. And I was passed from one organization to the other, through ALS as well, ALS Association I mean, through my both senators offices and at the time my representative's office. And I didn't get anywhere. I didn't really get... The individual I spoke to, yes, they were all on board, but it never went any further than that. So I finally, I don't know, it was like a light bulb went on that I thought, "Well, what about PVA? They helped from the very beginning. Let me at least talk with someone there and make them aware of this situation if they're not. And if they are, let's see what we can do." So it was a year after my husband died that I finally got into PVA to talk with them.
Jeremy Holden:
So we're talking six, seven years ago you started on this journey, the bill still in front of Congress. We've talked a lot on this program when talking about federal law and advocacy of public policy changes about the amount of time it takes off into. It's easy enough to get a bill introduced, getting it passed through committees and getting it voted on, that take takes time, that takes hard work, that takes, I think some have said blood, sweat and tears. For people that are listening now, What message do you have now, seven years into this fight about the need, continued need to address this gap in the law?
Jan Vasiloff:
Well, I'd say right now in our current economy, which is we've been hit with inflation, it's more important than ever. Today we're talking about an additional $308,28 cents a month. Which is for a lot of families and individuals, a car payment, paying an electric bill, it could be a week's worth of food at today's prices or not even that. So it doesn't sound like a lot of money, but put in that context, it can make a difference, a huge difference, of having what you need just for your basics or not. And there are, I think maybe people think of ALS as an older person's disease, so maybe dependents are not part of the equation, but that's not true. A lot of, because it hits veterans in disproportionate numbers, a lot of families, it's younger men and it's mostly men, but younger men that are being diagnosed and they do still have children at home. And so, you are as a spouse having to provide for these children. So that's $308, while it doesn't sound like it would pay for a lot. Yeah, it does.
Jeremy Holden:
Yeah. Certainly a meaningful amount of money to the people who are receiving a benefit that they have earned and deserve. We'll be sharing some links in the show notes so folks can reach out to their members of Congress and encourage them to support the Justice for ALS Veterans Act. Jan, before I let you go, any closing thoughts for listeners?
Jan Vasiloff:
Just that people should be aware that this is a bill moving forward. We are as far now as we've been in the whole process, it is out of committee in the house and needs to be introduced on the floor. If it passes the floor, then it goes to the Senate. Every time an administration changes, it goes to what I call the dead bill office, which is where they all go if they're not passed and you start all over again, getting sponsors and so forth.
So, it's important to try to stay the course no matter how frustrating it is. It comes down to finding the right organization and the right person that will take it on and carry it through to the end, till its passage. I would like to emphasize that we are not, I think it's a distinction that needs to be made, we are not asking for something new for these families, we're asking to be given what other families with other diseases already get and that ALS people are not, or families are being overlooked. And I think that that's important. This is not a new concept, it's not a new idea, it's just excluding victims of ALS.
Jeremy Holden:
It's an important point you make there. And just let people know, just a few short months left in this legislative cycle before we would have to start all over. So, find those links in the show notes and get involved in the fight for Justice for ALS Veterans. Jan, thanks so much for your time this week.
Jan Vasiloff:
Thank you. Thank you for having me.
Jeremy Holden:
I want to thank my guests this week, Daniel Kramer and Jan Vasiloff. If you like this episode, share it with a friend. And while you're at it, rate and review Connecting ALS wherever you listen to podcasts, it's a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar. Post Production by Alex Brower, Production Management by Gabriel Lamontakeen, supervised by David Hoffman. That's going to do it for this week's episode. Thanks for tuning in. We'll connect with you again soon.
ConnectingALS_102722_Ready1 (Completed 10/25/22)
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