Today we talk military life, finances and Autism with Rich Davis. Rich retired after a 28-year career in the US Navy as a helicopter pilot. He and his family reside in Roanoke, Virginia where he volunteers with his church, as the education coordinator for a local museum, and where he is involved with the local art scene as a photographer. He has an adult son with autism who lives with he and his wife and works in the community.
We’ll discuss a whole range of topics, including:
- The Exceptional Family Member Program (EFMP.)
- Tricare access at all stages of life.
- Why the Incapacitated Designation could leave you interacting with Medicaid instead.
- How constant moves and waiver waitlists can sometimes keep military families perpetually paying for services out-of-pocket.
- How Rich’s son and his family use his ABLE account.
- How they’re using supplemental needs trusts.
- A life lesson in why it is so important to educate your extended family members on asset tests and best asset sheltering practices.
- 2015 changes to Survivor Benefit Plans (SBPs) that allow you to pass on the benefit without impacting SSI.
- How you might end up knowing more about disability in the military than the military ‘experts you end up interfacing with.
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Kate Horrell, the Military Finance Coach.
Supplemental Needs Trust Episode.
Episode with Medicaid Researchers.
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Full Episode Transcript
Brynne: Hi, everyone! Welcome to Mom Autism Money. Off the bat, I want to address the absence an episode last week. Some of you may have seen our Facebook announcement, but what it boils down to is that I was sad. Like, really, really sad. Life in general is hard for all of us right now.
But then there are world events that push everything over the top. First, there was the racist terrorist attack in Buffalo. Then, Uvalde. If you haven’t yet listened to the past two episodes on Autism in the Latino community, I’d encourage you to go back and listen to them because they’re really great.
And the reason I’m bringing that up is because one of our guests on that topic – Arianne – she had a loss close to home in that event. Her dear friend’s niece. There’s a GoFundMe page for the family that I’m going to link to in the show notes for anyone who wants to contribute. And thank you to all of you who already saw it in the Facebook group and already did.
So I’m sorry I fell off the horse for a minute there. I’m back. We’ve got purpose. And we have a show that we’re really excited to bring you today covering the ins-and-outs of raising an Autistic child in the military.
Joining us to talk about it is Rich Davis. Rich retired after a 28 year career in the US Navy as a helicopter pilot. He and his family reside in Roanoke, Virginia where he volunteers with his church, as the education coordinator for a local museum and where he is involved with the local art scene as a photographer. He has an adult son with autism who lives with him and his wife and works in the community.
We’re so grateful to Rich for sharing his experience today. And I wanna remind you guys that the financial decisions that were right for Rich and his family may not be right for you, even if you’ve got a lot of similar circumstances. It’s always best to sit down with a certified financial professional and a lawyer that specializes in disability law and finances. But he’s going to point out a lot a great strategies that you can at least discuss and parse out with those professionals.
So Rich did something really awesome and went back and listened to all of Season One before joining us for recording. So you are going to hear us reference a lot of past episodes. If you want to learn more about any of them, please check out the links in the show notes. For example, we reference the episode on Supplemental Needs Trusts with Jillian Zacks and Brenton Harrison, which was Season 1 Episode 2. We also reference the episode where we talked to Medicaid researchers from Drexel’s Autism Institute which was Season 1 Episode 8, and the ABLE account episode with Paul Curley which is Season 1 Episode 1.
Rich also had an extraordinary experience where his son’s SSI application was accepted on the first try. And I just want to stress to you guys that that’s not the norm. That application process is really hard, so we actually sat down and talked with Social Worker and PhD candidate Dena Gassner about her proven method for successfully applying for SSI in this season, Season 2, Episode 3, so we highly recommend going back and listening to that one if you’re considering applying for SSI or SSDI as an adult or for an adult.
Another big shoutout today. We were connected to Rich by friends of the podcast, Doug Nordmann and Kate Horrell. Doug and Kate both do great work in the military finance space, so if you are one of our military listeners I want to encourage you to check out the links to their work in the shownotes, too. They provide some really, really valuable information.
Alright. Long intro today. Thanks for your patience with me last week, and I wanna thank Joyce, too, because this was 100% on me, not her. And she was so understanding and kind about it.
But all that said, let’s start this phenomenal conversation with Rich.
Brynne: Hi, everyone. Welcome to Mom Autism Money. Today, we are here with Rich Davis and Rich is going to talk to us a little bit about military life and autism, as far as it comes to things like healthcare and some financial stuff, as well. So Rich, thank you so much for being here. We want to talk about a lot of topics today.
But let’s just start at the beginning. I understand you’re the parent of an autistic son and you’re also a military retiree. I’m wondering if we can learn a little bit about your military background? Like what branch did you serve in? What was kind of the path you took to enter the military?
Rich: Okay. Great. Well, thanks so much for having me. I didn’t know a lot about your podcast, but I’ve been listening to it, uh, to prepare and I’m really impressed with the work y’all have done. So keep at it. I think that’s fantastic. What you’re providing. I’m excited to talk to you about my family and dealing with autism.
I served in the Navy as an officer for 28 years. I retired just a couple of years ago. More than that now, I guess three or four years ago in 2018. I got my commission actually from Virginia Tech. Go Hokies. Through the Navy ROTC program there. My primary role was as a Naval aviator flying helicopters off mostly smaller ships.
I’ve been stationed in Virginia and Florida primarily during my time in the military, most recently in the DC area. And we’ve retired to Southwestern Virginia. So that’s kind of where I am. And I’m excited that the Navy was kind enough to send me to basically every continent except Antarctica during my time.
And I did love almost every minute of it. Glad to be here.
Brynne: Oh, that’s wonderful. We’re so glad to have you here with us. This is just a Pittsburgh nerd thing. I have a lot of friends who end up going to Virginia Tech. I’m wondering if that’s just something that everybody goes to Virginia Tech or is that a Pittsburgh thing?
Do you know a lot of people from Pittsburgh that went to school with you?
Rich: Well, it’s funny you should mention that. So I actually, I’m retired from the Navy and I’m pretty much fully retired, but I did work for a year in Virginia Tech admissions. And as luck would have it, one of the places that I was responsible for was Pennsylvania.
And we did have a lot of applicants. Pennsylvania is basically the biggest state other than Virginia for Virginia Tech. So we have a lot of, uh, Pennsylvania folks, both from your side of the state, as well as the Philadelphia side that come to Tech. So it’s a pretty popular school without out-of-state folks in Pennsylvania.
Brynne: That’s too funny. I was wondering because everyone, everyone just ends up going there. It’s a wonderful school.
And now, I’m wondering when you had your son, were you active duty when he was initially diagnosed? Was that a part of the journey in the military or did it happen beforehand?
Rich: My son was actually diagnosed while I was deployed.
And so I have to take a minute here and give lots of credit to my lovely wife. She’s always been a huge advocate for our son and pretty much running the show, as you can imagine when I’m, when I was deployed. So I was deployed when he was diagnosed. He was diagnosed through civilian healthcare, civilian doctors.
One of the things that we decided kind of early on, you know, in the military, they do offer you Tri-Care health care. And there’s a couple of different programs. The one that we chose was called Tri-Care Standard. I think now it’s called Select, which basically allows you to work with primarily civilian doctors instead of on-base medicine.
So it was civilian doctors that were the first to evaluate our son and after many appointments, we got to the diagnosis, of course, and that’s when the real work began.
Brynne: Absolutely. Absolutely. I feel like it’s an incredibly tall hurdle just to get that initial diagnosis, but then just like you’re saying, that’s when all after you get it, that’s when you get access to all of the therapies, all of the everything.
Once you had the diagnosis, my limited experience with Tri-Care and my understanding of it is it’s a pretty good health insurance plan to be on. I’ve very rarely heard of people having trouble getting treatment, at least when they’re active duty. I’m wondering if that was your experience with autism though, specifically. Were you able to get all the therapies that you needed?
Did you end up holding the bill on any services? What was that experience like when you were active duty?
Rich: Yeah. So I do have to preface this, that my son’s 23. And so a lot of this happened a long time ago and things have changed dramatically. And unfortunately I’m not up to speed on exactly what is available, what Tri-Care will and won’t pay for. Our experience was that Tri-Care was great on the medical side, but when it came to therapies, we ended up paying for quite a bit of that ourselves.
So like, applied behavioral analysis therapy, we paid for a lot of that out of our own pocket. I think we did get some coverage for speech therapy, but otherwise we ended up with a lot of those. And then of course, once you’re in the school system, getting those services through the school system can be challenging, too.
But that that’s kind of outside the scope of Tri-Care. But I do want to emphasize that that was a long time ago, and I know there’s new programs today and I can’t, I can’t really speak to those specificly.
Brynne: No. Absolutely. Absolutely. That’s really interesting because I think that’s what we come across in the private sector a lot, too, is that you can have a great healthcare plan through your employer or through the ACA, however you get your health insurance and maybe on that, on the medical quote, unquote medical side of stuff everything’s covered really well.
But then on the behavioral health side or the mental health side or however they ended up classifying your child when they’re autistic, those services are harder to get. I know some states are starting to impose some parity laws now to try to make that access a little bit more equal and recognize that all is medical all is healthcare, but that’s, that’s really interesting.
I did not know that Tri-Care maybe has a similar thing going on or at least it did. So, you were talking about how you moved around a lot, and that is something that, I mean, every military family goes through. I’m wondering, especially with the, I mean, with all of the locations that you were in, but especially the ones that were abroad, I guess.
Did you guys find access to services were easier or more difficult to obtain depending on where you lived or was it pretty seamless regardless? How, how did that all work for you?
Rich: Well, one thing I want to talk about for just a second is, um, the Navy, actually all of the services have a program called the Exceptional Family Member Program (EFMP.)
And that’s basically a program for any dependent, whether that’s a spouse or a child that has any sort of disability or serious medical condition. And the purpose of the program is so that the military doesn’t inadvertently, you know, give the family orders to a location where services or the medical requirements won’t be met for that family member.
And so it is mandatory if you have a child or a spouse that has one of those, either disabilities or medical conditions. And just quite honestly, a lot of times people are leery of joining or enrolling in that program because they’re worried about, Hey, is this going to hurt my career?
Is it going to hurt my chances to advance? I can tell you from my perspective, it didn’t affect my career in an adverse way, but it did, it did make things challenging sometimes to try to find like the next set of orders in the next location to move. But overall it’s a really important program. And usually what the Navy would do is they would keep me and my family in what we call fleet concentration areas.
So kind of the areas of the country where there’s a lot of bases. So if you think like Norfolk, Virginia, DC area, you know, San Diego on the west coast, um, Jacksonville, Florida. So I was in Jacksonville a big chunk of my career. And then in DC. We spent a little time in like Chesapeake area of Virginia, but that was before my son’s diagnosis.
And so all of that kind of plays into it as well. As far as the services go, most of the actual services were out in the public out, you know, not, not affiliated with the Navy. And whether or not the Navy would pay for it, that was more of a Tricare thing. But we found that Florida and Virginia were the primary places we were stationed and they both had kind of different ways of looking at the services and different things that were available.
So it does really change as you, as you move from state to state. As you’ve talked about a lot on your podcast, you know, it’s dramatically different how different states handle disabled folks. So I think that’s, that’s probably the best answer.
Brynne: Absolutely. Absolutely. And that’s an incredible program I didn’t know about.
And just as we’re sitting here talking about it, I’m thinking about some of the deployments my friends have been on or not deployments, but some of the places that they’ve been assigned. There have been different rules for like family accompanying you, whether you are GI or whether you’re an officer, but I’m wondering if within that program, if there are also different rules for GI and officers, or if it’s pretty much the same across the board.
Rich: Yeah. I think it’s pretty much the same across the board. One important point is that the purpose of EFMP is to make sure that the dependent is located where the services they need are available. That doesn’t always mean co located with the sponsor who’s the military member. And so that was always one of the things kind of in the back of our mind is because you’re in the military, you are still worldwide deployable, right?
So I can, when I was on active duty, if they decided that I needed to go to Afghanistan or to Iraq or to a ship for wherever they could send me there. Or they could even send me to a place in Europe or something. And my family wouldn’t be able to go because of the EFMP program. So it can be a little limiting and it can actually have the impact that there may be, uh, there may be, you know, a set of orders that a military member has to take and their family can’t accompany them because the services aren’t available.
It’s not a hundred percent a great program. It can impact you a little bit, but usually you’re able to work in those fleet concentration areas when you’re on shore duty. When you’re not in a deployable status and it works pretty well.
Brynne: Gotcha. Gotcha. Apart from being stationed overseas, like we were talking about a little bit with Europe or maybe Japan or something. Were you ever deployed in a combat zone after your son was born? Or I guess even just separated by different assignments across the globe? And if so, I’m just kind kinda wondering how your spouse handled that situation?
I imagine it was incredibly, it’s incredibly difficult for anybody, but especially with an autistic child in the home, I feel like that may be a tricky situation.
Rich: Yeah, absolutely. And so I did do, uh, two, six month deployments on ships after our son’s diagnosis. And as I said before, my wife was, it is a fantastic mother slash advocate slash therapist slash repair woman slash duty driver.
She had to work especially hard when I wasn’t around to provide physical help or immediate emotional support. Sometimes that she needed. We do have a saying in the Navy and it applies to all the services. You know, Navy spouse, military spouse, it’s the hardest job in the military. And we definitely believed that. We were blessed with a lot of friends in our area, in our neighborhood.
And then through the helicopter squadron I was attached to when I was deployed as well as a great church that we’d been a member of for years. And so all of that helped her. She had a lot of help, you know, a big safety net of friends to help. But as you well know, at the end of the day, it comes down to, you know, making hard decisions for your child and working through the hard behavior problems and all of those things.
And she had to do a lot of that on her own. And we were fortunate that I didn’t have to ever be sent to order somewhere else. So other than deployments, I never had to be away from my family for a long length of time.
Brynne: Gotcha. Gotcha. And man, is that true about the spouses holding things down at home? A lot of respect to military families, both to those who actively serve and to those who were back home supporting.
That’s so neat that you guys found a church that was great. I know whenever my family moved around a lot, that was always like, kind of a rock. It was kinda like a built-in community. We had the people on base obviously, and within our unit that were very supportive. But then also that church community I found was a really great thing to just have, even when you’re moving around, you can still find a group of people who are there to support you.
When I’ve lived on military bases, I’ve known some GIs in the situation. So this may be more common when you’re in those lower ranks, but I’ve known families who have sought out deployments specifically for that combat or hazard pay. For example, I’ve known people who have repeatedly tried to and successfully deployed to Kuwait because they were trying to fund something back home, like IVF to help grow their family.
And I’m just curious with autism, especially because some of these costs are costs that your family took on yourself. If you’ve ever felt a need to pursue a route like that, or if you’ve had a reason for it to cross your mind, or even if you’ve known other people who have, or if maybe this is just a random thing that I saw with the people I know, and it’s totally anecdotal?
Rich: No. I, I think it definitely happens. I would say it’s probably more common with enlisted just because, you know, sadly we don’t, we don’t pay enlisted enough. I don’t think anybody would argue with that. So a lot of times, you know, money is, is tighter for them. I found that the Navy kept me deployed plenty without seeking extra deployments, but we were blessed with a fairly good salary.
And this, this helped a lot to give us flexibility when deciding about whether to take an extra assignment. To get more cash. Uh, and so, you know, every family and every situation is different, but we felt like keeping our family together as much as possible, made the most sense for us.
Brynne: Absolutely. All right, let’s get into some of this healthcare stuff, because when you’re in the military, you have access to Tricare.
But then when you separate things, start to get a little bit trickier. I understand that you and your wife went on Tri-Care Select, but that’s not necessarily an option for our adult children always. So your son moved on to Medicaid in the state of Virginia. And I’m just wondering a little bit what that process was like.
It sounds like he might’ve been on the cusp of like, I’m not sure if he would have been a minor or if he already reached the age of majority. And I know with autism that matters like a lot as far as the different waiver programs states have set up as far as access to care. So I’m just wondering about what that process was like for you.
I know in some states it’s a little bit easier, a little bit harder, and we’re just, I’m not sure what it’s like in Virginia. We’d love to learn more.
Rich: Okay. Sure. So my son reached 18 before I retired from the Navy. So we were still in Northern Virginia and we made the decision to become his guardian. So we engaged an attorney for that process.
And then once he turned 18, we also applied for SSI. He previously wasn’t eligible for any of that until he became an adult just based on our income. Uh, and then as far as Medicaid goes, he was covered on Tri-Care until, I think his 21st birthday. And then they basically said, okay, you’ve got to now prove that he’s either going to school full-time, cause Tricare will cover like kids in college up to age like 23 or even a little beyond, or you have to prove that he is an incapacitated individual, which means that he’s unable to take care of himself. And so we looked into the process of getting him designated incapacitated. And basically what that required is that we show we provided more than 50% of his support.
That doesn’t sound too tough. If you think about how much you spend on your kids. But when we dug into the details of it, what we discovered is a lot of the stuff, it wasn’t a simple 50%, you know, we couldn’t just like charge him 50% of something. We had to look at how many people in our family, and then it was a much smaller percentage.
So ultimately what we decided was that we couldn’t really make the case for incapacitated. So he lost his designation as a dependent, and that meant that he was going to lose Tricare. We’re blessed that he is able to work a job and take care of himself. And so we did enroll him in Medicaid, in Virginia.
And I’ll tell you that that was a fairly seamless process. But one of the questions we had is were their asset tests, I don’t recall anything specific for Medicaid, but they may have gotten the data from, uh, social security.
Brynne: I’m curious about the incapacitated. So when you say like the size of the household, would it be if there’s more adult members of the household, you had to provide a higher dollar amounts of support to him? Or what were some of the challenges?
Rich: One of the challenges was he was working and he was getting SSI. So he was, he was getting a paycheck. He was paying us rent, you know, to get a higher level of SSI. And so he had a certain amount of income. And then what we had to show is that we were providing greater than 50% in addition to that. And the math gets a little weird because what they do is they’ll say, okay, how many people are in your family?
Well, we have a family of four people living at home. I have a younger son. And because they were not the husband and wife, because they were children. It was much less than 50%. And I can’t remember the exact math, but it was such that you really had to be able to show significant spending specifically on the incapacitated individual to qualify, to be able to prove that they should remain a dependent.
And so, like I said, in our situation, we didn’t think it was worthwhile. The other thing is that you basically, every year you had every four years, you had to go back and requalify and show again what was going on. So we just kind of punted and said, okay, we’re gonna. We’re not going to do that for now.
We’ll try Medicaid. We’ll see what we think of that. And it’s worked out pretty well, but I, I would definitely recommend anybody in that situation. Do the research on what’s required for incapacitated, especially because every child with autism, every child with a disability is different. And so in our case, because he was working a job, making pretty good money and had SSI, the math just didn’t work for us to be able to make that decision.
Brynne: Definitely. And with SSI, I know that’s a process that it sounds like maybe it was a little bit more seamless for you guys, but I know you had a lawyer already for the transition to adulthood with the guardianship and everything. Did you guys run into any trouble? Did you have to appeal his case at all?
Or did he just get it on the first try on like that first application?
Rich: Yeah, I think he got it on the first try. Our attorney was available and involved and she gave us some guidance on like how to apply and such, but I don’t think that was very difficult. We were able to get SSI flowing and then we were able to submit the lease so that we could show the rent he was paying us.
And then that bumped up his SSI number. And that was before he started working that’s while he was still doing job training in school.
Brynne: That’s so great that it wasn’t difficult. That can be a nightmare. And I think it’s awesome that the lawyer was there to help with the application process. I feel like that could be a huge thing is just having someone to guide you to get it right the first time.
When he transitioned to Medicaid, but also maybe even prior, because let’s be real if you’re getting services out in the community, I know, especially right now through the pandemic, a lot of parents are going through this. Where the wait lists are just absolutely off the charts long. I’m wondering if you guys have ever had to deal with any waitlists, whether that be in getting him services in Virginia, or if, when he was younger, when you’re getting those services in the community, rather than on base and kind of what that experience was like.
Rich: Yeah, I’d say the biggest, the biggest challenge with the waitlist and the waiver programs is every state’s different. And so when we got our son’s diagnosis, we had just moved back to Florida. And so we immediately got him on the wait list there. And we were there for several years for a couple different tours.
And never made any progress on that, which is why we were kind of paying out of pocket for a lot of stuff. I don’t have a good excuse for why we didn’t immediately get on the Virginia waiver when we moved back to Virginia. But for whatever reason we didn’t, we kind of just said, okay, whatever. And so we’re trying to get on the wait list now for Virginia, not so much for behavioral services that you would need, but in anticipation of the time when we’re gone and he needs to be maybe living in a group home setting or something like that, to make sure that he’s got the services that he needs for that.
So we’re kind of working on getting back there, but it is a pain in the military that as you move state to state, you basically start over on each state’s waiver program, you know, uh, on that wait list.
Brynne: Absolutely. And you know what, specifically with Florida, we’ve heard from parents who are stationed in Florida and it is, it’s just like this desperation thing it’s like by the time this waitlist is almost a decade long, by the time that we get stationed somewhere else… How, how do we kind of manage this? And it sounds like unfortunately paying out of pocket might be one of the only ways to get it done.
So I’m so glad you brought that up about Florida, because that is something that we’ve consistently heard from the parents in our audience. So guys, know that you’re not alone. It’s not pleasant, but you’re not the only ones experiencing this. I also think that’s so smart to start getting on the wait list in Virginia now, because again, the waitlist for some of these programs can be decades. And man, my heart goes out to you having to move every couple of years with all that.
Sometimes just living in the same state. We have, I lived in Pennsylvania. We talked about that with the Hokies, but we have pretty good access to care here compared to other states, pretty good access to medical assistance. And there are still times where we’re just sitting here and waiting. So I cannot imagine starting that process over again, every few years.
Now, looking at today, do you guys feel like he currently has all the services he needs through Medicaid? It sounds like his needs might not be as high right now, but does he have access to like healthcare and any therapies that he might need?
Rich: I would say, the switch to Medicaid was fairly seamless on the medical side, basically all of his doctors. So his primary care physician, his psychiatrist, trying to think if he has another doctor, he probably does and I’m forgetting, but all of those took Medicaid. And so it was very easy. So that part of it was fairly seamless.
The dentists, that seems to be a little bit tougher. And so for dental we’ve, he doesn’t have any dental problems per se. So we just made the decision. Hey, we’re just going to pay for his cleanings and exams out of pocket. If something big comes up, then we can look at trying to find a dentist that takes Medicaid.
But apparently that’s a much tougher nut to crack is finding like a dentist that, that takes it. So I’d say that’s kind of been the biggest challenge. We don’t get any other services through Medicaid right now. We’re like I said, we’re not on the waiver yet. So we’re just trying to kind of plan ahead.
There’s nothing he currently needs that’s not provided, but like I said, we’re trying to plan ahead on for the future. What, you know, what happens when we’re gone? Who’s, you know, how’s he going to be taken care of?
Brynne: Absolutely. That is so true about the dentist, too. I finally found one that is good with autistic kids and accepts Medicaid, but honestly, for a few years there, we just paid full uninsured prices because I was like, you know what?
We need to get this taken care of, and a lot of the dentists that accepted Medicaid, weren’t particularly compassionate to our situation. So that’s, that’s again, another really good point just with the dental care and access. And I think that’s probably going to be a problem across the country that we see.
We have had a few listeners, they’re in the military now. They’re active duty. They are planning on retiring through the military and they know that someday they’re going to be eligible for Tri-Care for Life. And that’s, I believe if I understand correctly, when you turn 65, that’s something that the military veteran and their spouse becomes eligible for.
And I’m wondering how that works with children. I know you haven’t lived it yet, but I’m just kind of wondering how you guys are kind of preparing for that.
Rich: Yeah, that’s a great question. The first thing I want to explain is that Tricare for Life is a little bit of a misnomer. So it’s called Tri-Care for Life. But basically what happens is when you retire from the military, you can stay on Tri-Care Prime or Tri-Care Select.
So Tri-Care Prime is set up for, if you live close to the military base and you have access to the hospital there on base and you want to use that primarily. And then maybe use some doctors out in town. Whereas Tri-Care Select, which is what we’re on, you basically are just using civilian doctors that, that happened to accept your Tri-Care program, which is currently Humana.
Tri-Care for Life is designed for what happens when you turn 65? And so at 65, all military retirees are required to enroll in Medicare as their primary insurance. And then Tri-Care for Life becomes the secondary payer. So really military retirees will use Medicare for health insurance at 65, just like everyone else.
Now, as far as your child, uh, it goes back to that question of whether or not they’re incapacitated, according to the military’s definition, otherwise they would stay either on Medicaid or, or maybe Medicare. And I don’t have a good understanding of how that switch from Medicaid to Medicare works. Cause we haven’t really looked into that, but that’s kind of important to understand because Tricare for Life sounds great.
Sounds like a great program, but it’s one of those programs that isn’t quite what it seems to sound like.
Brynne: That is a huge question too, is like Medicaid versus Medicare when you are disabled or autistic. We actually, we sat down with some researchers last season who specifically research these healthcare policies.
And one of the questions we ask them is what’s prompting people to get both Medicaid and Medicare and their answer was pretty much, we don’t know. Like we don’t have data to even support that. So feeling lost in that I feel like is a common thing.
So I guess for you guys with the. Medicare and Medicaid considerations, but it sounds like you’re pretty happy with Medicaid for right now.
And it’s providing everything you need. Is there anything else that you guys kind of think about and consider with that?
Rich: I’d say the only other thing other than the dental piece is with Medicaid. Once again, in Virginia. So your mileage may vary. They will only fill a 30 day prescription and they won’t do refills.
And so, you know, what we enjoy with Tri-Care is we can get 90 days of medication and a couple of refills, and it’s all, it’s very easy to go online and refill medication. Well, with Medicaid, you have to kind of contact the doctor basically every month to get another prescription written for medication. And if you’ve got obviously more than one medication for your child, that can become almost a full-time job as my wife would happily tell you.
So I’d say that’s another thing that at least in Virginia is a bit of a challenge is that they won’t give you a lot of excess medication and you really got to keep on top of that.
Brynne: Yeah, absolutely. And amen to that being another full-time job. All the paperwork, just all the paperwork. All right. So we’ve talked about healthcare and healthcare is a huge part of it.
I feel like access to healthcare is probably one of the biggest things that just defines our finances day to day. Just because like you were talking about when you don’t have access to it, or you’re waiting on a waiver list. In the meantime, you’re paying out of pocket for it. And that stuff’s expensive.
However, we do want to talk about some other things today, too. I know that your son has an ABLE account. So first of all, Virginia is very, very proactive with its ABLE accounts. I know that they invest a lot in their marketing. They have the ABLENow account. And then I think they also have the ABLE America account, which is a little bit of a newer product to me that I’m just learning about.
I’m wondering what your guys’ experience with that is, especially with him working and everything. I wonder how you guys kind of use that to maximize your day to day finances and kind of access to some of these programs.
Rich: Sure. Yeah, I wasn’t very familiar with the ABLE account and it was actually, I actually found out about it after we moved to Southwest Virginia, the timing for my retirement, one of the things I considered was that our son with autism had had two years of post-graduation training with the school system and he was eligible for another two.
And so we made the decision to retire such that he would have two years of eligibility left when we moved down to Roanoke. That worked out well. And that’s a little bit of background on how I found out about the ABLE account is one of the, the program he was working on, you know, to kind of gain experience for employment.
They had a seminar where they talked about Medicaid they talked about special needs trusts and they talked about the ABLE account. And that was news to me. I didn’t know about ABLE, so we signed him up for it. It was fairly easy. And we, uh, so we basically put money from his paycheck into that account and just kind of let it build up.
And then we draw from it for things like that dentist, right? So we’re paying out of pocket for the dentist. So we’ll pay for that. If we go on a vacation, then we’ll pull the portions of his, basically what his portion of the vacation money out of there. And as such as needed, I do want to kind of emphasize, we’re fortunate that we’re able to do this, but what we do when we pull that money out of his ABLE account to quote unquote, pay ourselves back for those things.
We then usually turn around and put that into a special needs trust. And so we’re, I know we’re going to talk special needs trusts, but I just wanted to kind of say that we’re able to do that. So we probably wouldn’t pull money out of that able account, except that we then are able to use that, that process to turn around and put the money into a special needs trust.
And we’re able to do that because it’s no longer his money. He’s paid it to us for something that we’ve provided. And that, that allows us to make that move. So hopefully that’s helpful.
Brynne: Yeah, absolutely. Oh my gosh. So many questions. I’m so excited. So my first question is with him working, I think the average balance in an ABLE account for just the average person is somewhere around $8,000.
The cap used to be $15,000 just this year. I think it jumped up to $16,000 for how much can be contributed every year. But there’s also this legislation called ABLE to Work that if you are working, you can contribute in excess of the $16,000 up to a certain dollar amount. Here in the contiguous US I think it’s somewhere between $12,000 and $13,000 more, but I’d have to check myself on the math on that, but I’m wondering.
If that even affects you, if the ABLE to Work is allowing the contributions to exceed $16,000, or I think, like I said, for a lot of people, they’re just not even hitting that $16K every year anyways.
Rich: Yeah. So we, uh, we haven’t really hit those limits to the point where it’s like, oh no, I wish we had the ability to put more money in.
He makes pretty good money at his job, but it’s not a huge amount of money. And so we haven’t come anywhere near the cap or needed the ABLE to Work piece to be able to put more money in there.
Brynne: Gotcha. I know that for SSI, the money that you put in there from your job when you’re disabled, it doesn’t reduce your income that still counts as income. In some states, though, for some programs, the money you put in there does. Is that a strategy that benefits you guys in Virginia?
Or is that just kind of, for a lot of people it’s not relevant, but I’m just curious.
Rich: Yeah. So it protects the money for asset tests, but I don’t think that it has been a huge deal for us except that his pay has decreased his SSI, obviously. So, you know, we report his paycheck to social security and that decreases his SSI.
And along those lines, I do want to tell a quick cautionary tale to those that are listening about how important that asset test protection is. So we kind of learned the hard way. We’d always been very careful to make sure that we didn’t have anything close to the $2,000 limit. But what we found out is that a very nice relative, my mother-in-law, was saving money for all her grandkids, including my son with Autism.
And Social Security ended up finding that money before I found out about it. And so consequently, we lost his SSI benefits and, uh, initially social security was coming at us basically to pay back every dollar of SSI that they’d ever paid. Cause they said he wasn’t ever eligible because of this money.
And it wasn’t a huge amount of money. It was a few thousand dollars that was like I said, in a custodial account, but it was all in his security number, so they found it. And, uh, so I would just use that as, as a really have to work, not only to educate yourself, but if you have relatives that want to help your child, making sure that they understand what is and isn’t allowed.
And I think we’ll talk a little bit about that when we get to the special needs trust, kind of how to handle that. I had some great episodes on that already, but it’s really important that you understand, and that anybody who might be interested in saving money for your child or giving money to your child, that they understand what the rules are, as well.
We’re still working with social security to get that kind of turned back on. And of course, COVID, hasn’t made that any easier either.
Brynne: Oh, my gosh. I’m so sorry you guys went through that. And it’s so important to, just like you said, to educate family members. Cause they really are trying to help, but letting them know that there’s things like, hey, you can still help, but there’s this ABLE account put the money in there or we have a Special Needs Trust.
If you’re going to leave money to my kid, leave it in there. That’s such a huge thing because I feel like our families so often do want to help us, but just making sure they know the best ways to do that so that they’re not actually detrimental. Oh, my goodness. I’m so sorry
With the ABLE account, it sounds like you guys might have set it up primarily for asset test protection, especially with that SSI.
Are you guys interested in the tax benefits of it or what were those primary motivations behind setting up an ABLE account?
Rich: Yeah, for us, it was primarily the asset test protection. For our particular case, there’s not a lot of tax benefits because he’s still below the poverty level for his pay. So that, that isn’t much of an issue, but certainly it’s, it’s great to be able to save more than that $2,000, which really that can make it really hard for families to ever save up for anything important for that child.
So it’s been a great program for that.
Brynne: Absolutely. Absolutely. So you talked, I am so curious about this aspect. So you guys, when he pays you back out of the ABLE account for things like housing, vacation, all of that you guys are then turning around and putting the money into a special needs trust. Are you guys doing that just as a way to save for his future?
Because you can and because you don’t immediately need the money today? Or is there another advantage to doing it that way?
Rich: We’re primarily using it as a vessel for assets to pass to him after our death. We are putting some money into it now, uh, like I said, we’re, we’re fortunate that we’re able to afford that when he pays us rent, we just turn around and put that into a special needs trust each month.
And same thing with anything we quote unquote, reimburse ourselves for like vacations and stuff. We primarily just put that into the special needs trust. So there is some money in it. We had a generous relative that gave us some money to kind of get the trust started. He does have another small inheritance that’s in there, but it will primarily be funded out of our accounts.
After we pass. I do want to kind of tell you that we actually have two special needs trusts, and this is something very specific to the military. You know, most people, when they talk about, you know, having a, a special needs trust, they talk about what’s called a third party special needs trust. So this is something that’s usually the money is not in the, in the individual’s name specifically, you know, kept their name is kept out of it so that it doesn’t impact things like their ability to be eligible for SSI and Medicaid and those kinds of services.
So that’s a fairly standard one. The third party special needs trust. The second one we established is what’s called a first party special needs trust, and that’s to take advantage of a very specific benefit that’s fairly new that the Department of Defense has offered where a disabled family member can receive what’s called a Survivor Benefit Plan (SBP.)
So I got to give a little bit of background on survivor benefit plan. So this is designed, it’s an annuity that’s available to anybody in the military. So while you’re serving in the military, the survivor benefit plan is basically paid for by the military. So if you pass away on active duty, your spouse or your designated dependent will get a portion of your pay as an annuity for the rest of their lives.
Once you retire, you have the ability to continue that benefit, but you have to pay for it. So I have money deducted from my pension check every month to pay for this annuity. And normally it’s designed to support a spouse or a, a minor dependent. So somebody who has not reached the age of majority. But in 2015, Congress changed the survivor benefit plan to allow a service member to direct that annuity to fund a first party special needs trust for a disabled child, even if they’re beyond the age of majority.
So this provides a percent of the service members retired pay for the life of the disabled child after the death of the service member and the spouse, if applicable. So in our case, if my wife outlives me, she’ll receive a survivor benefit plan while she’s alive, and then my son will receive it after her death.
Since it is a first party special needs trust, any excess money, you know, upon the death of the, of the child is returned to the government. But this is a really great program. That’s fairly new. A lot of people don’t understand exactly how it works. And I am certainly not an expert, but we did go through that process to hopefully set that up.
Brynne: That’s awesome. That’s awesome. And it sounds like with the third party one, those Medicaid clawback provisions aren’t there, but with the first party one they are, however, because the SBP would, if he’s going to get it anyways, and it would disqualify him from qualifying for SSI or Medicaid within his lifetime.
It sounds like the trade-off, even though there is that clawback provision, it sounds like the trade-off is better because it’s going to provide them a better quality of life while he’s here.
Rich: Yeah. And to be clear, this is specifically designed not to impact things like SSI and Medicaid, so they can still receive those while they’re living.
Because it’s going into a trust, it doesn’t count for asset tests. The difference is, like you said, that you need to spend it first because when they pass away, that money goes back to the government, just like a clawback provision for Medicaid.
Brynne: Absolutely. Absolutely. That is creative of them. I’m happy that change was made.
With your third-party special needs trust, when you’re turning around and putting the money back into it, are you actually funding the special needs trust now? Or are you putting that money into investment accounts or accounts that you plan on leaving in the special needs trust? And then it will be funded after you pass away?
Rich: Yeah. So it’s actually the former. Where we went, when one of my relatives contacted me and said, Hey, we want to give you some money to put into a trust for him.
We actually, the trust was just an empty vessel, but we actually went to, in this case, we went to Vanguard and we opened an account that is the special needs trust account. And so it’s just for that purpose. And that’s where we put his rent and any other things that he pays us back. So it’s slowly growing, but it’s certainly not being like fully funded.
We’re just putting a little bit of money in there because primarily our plan is, is to fund that with our investments and our assets after we pass.
Brynne: Now, I know the military provides a lot of resources for its service members. There’s been, I’ve seen tax programs done on base. So you’re military. You can go in and get your taxes done for free.
I’ve even known people who have gone in and gotten free access to legal services. And when you were setting up your SNT, I’m wondering if that was a part of it with the military, or if you did work with a civilian lawyer, if you’re aware of any such resources for active duty members or veterans, as far as the legal side of things?
Rich: Yeah. So I, I can only tell you from my experience. So there are a lot of things that you can get done, like at base legal. You can do wills and powers of attorney. But my experience is they don’t normally do trusts that they usually are not set up for those kinds of things. And so usually you have to go out in town, but it’s certainly worth asking.
And if you do out in town, it’s definitely worth, you know, trying to get a discount. One thing I discovered between being in DC and now being in Southwest Virginia is that it was, we paid a significant amount of money for both of the trusts that we set up. And when we got down here to, uh, Roanoke, Virginia, we met with a lawyer to kind of redo our wills.
And the whole thing would have been a lot cheaper to do down here, but we didn’t have any choice. So it’s worth shopping around to some extent and see if you can find a lawyer that understands special needs trusts, and maybe can give you a better deal.
Brynne: That’s a really good point about just where you are at can affect how much it costs.
And another really important thing I feel like with that is to know that when a lawyer is licensed to practice law in a state, that’s not, you don’t necessarily have to go to someone in your county. So maybe that might be another strategy. If you’re looking for ways to save on the fees and everything.
My next question is about TSPs. I don’t know if this is a financial tool that you used, and I’m wondering if there’s anything special or unique about them in regards to retirement planning and having an autistic child, or if they’re even linked, if you even have your TSP in your SNT linked.
Rich: Yeah. So that’s a great question. So when I retired… First off, TSP is the thrift savings plan. And so it’s basically a 401k for the U S government. And so the benefit of TSP is it has very low fees because they have so many investors in the program. But what I’ve discovered is a lot of the big investment companies like Vanguard and Fidelity are also offering index funds with low fees.
So we may end up moving our TSP out to Vanguard at some point. But TSP is a great benefit, especially now that some service members can get matching in some cases. And like I said, this might be a different discussion, but at the end of the day, it can be a bit cumbersome to work with. There are no direct links between TSP and the special needs trust, but you can certainly designate the beneficiary there for it to transfer.
Our intention is probably to move our money out of TSP at some point, just to kind of consolidate everything with Vanguard.
Brynne: Gotcha. Gotcha. That makes a lot of sense. Now, before we wrap up Rich, I, we always like to end these things by saying that we don’t know what we don’t know. And I feel like this is especially true today in the military aspect, just because Joyce and I have never had experience with autism within the military.
So I’m wondering if there’s anything that we haven’t covered today that you just think is important for families to know.
Rich: Yeah, absolutely. So there are a lot of resources out there for military families. And I think there are a lot more resources than when we were kind of at that phase of life. A lot of times you have to dig to find them.
And don’t be surprised if after doing your research, you find out that, you know more than the quote unquote experts you’re dealing with. I’ve ended up knowing more about the process for the, like the exceptional family member program than those who locally were in charge of the program. And so a lot of times, if you’ve done your research, you can be an asset to them on helping them to understand what services you need, how to get what you need.
But it’s important to keep in mind that a lot of times in the military, folks that may be the representative for that program that may not be their primary job. It may be a second or third job that they do kind of on the side, in addition to all their other duties. And so they’re usually happy to help, but a lot of times they may need some prodding and some knowledge from you to help out.
One of the things that, that certainly comes up. Uh, it’s, it’s super challenging to be in the military anyway, but when you’ve got a special needs child, that can make it really, really tough. And I think, you know, one of the guys that I think who connected me actually to you is, is Doug Nordman, he’s a retired submariner, uh, and that guy’s great.
He’s forgotten as much about military retirement and the military programs than I’ll ever know, but his guidance on kind of how long to stay in the military is to stay while it’s fulfilling and challenging. And when that stops, you should consider potentially affiliating with the guard or reserves.
So you keep building towards a retirement. Uh, although it will be a little bit later in life. But don’t hang on in the military just for that pension, if you and your family are miserable, or if it’s no longer fun. It’s a tough life for the service member. And especially for the family. In my mind, it could also be a very fulfilling one.
I’m fortunate that I was raised a Navy brat and then have a long career in the Navy. But your mileage may vary. As long as it’s still fun for you and your family, keep at it. When it’s no longer fun, then move onto something else, knowing that your skills and experiences as a veteran are going to be very much in demand in the private sector.
Brynne: Thank you so much for that. I feel like that’s so huge. And thank you also for all of your service through all the years. It’s not an easy life and it’s one that deserves a whole lot of respect. And just thank you for that. And thank you also, so much for joining us here today.
Rich: It was my pleasure. I had a, had a great time, really enjoyed talking with you.
Brynne: Thank you so much to Rich for joining us, and thank you so much to everybody listening today. If you enjoyed this episode, please make sure that you are subscribed on the podcast platform of your choice. Whether you’re listening on Spotify, apple podcasts, Google podcasts. That will ensure that when new episodes come out, they are added to your queue and you won’t miss out.
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