Tony Mantor: Why Not Me the World

Andrew Smidt: Crafting Secure Financial Futures for Families with Autism – Navigating Benefits, ABLE Plans, and Special Needs Trusts

Tony Mantor

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Discover the critical financial strategies that can transform the lives of families with autism in our latest episode of "Why Not Me." 
Join us as we sit down with Andrew Smith, an experienced financial planner who specializes in guiding families with special needs. 
With a personal connection to the cause, Andrew delves into the complex world of government benefits like SSI, SSDI, and Medicaid, shedding light on how families can navigate these programs while addressing unique financial needs such as medical and travel expenses. His insights emphasize the importance of personalized planning and utilizing specialized tools to create secure financial futures.

Ever wondered how to manage the financial complexities that come with an autism diagnosis? 
Andrew walks us through the essential first step of securing case management and introduces the ABLE plan—a game-changing financial tool for individuals with disabilities. Similar to a 529 college savings plan, the ABLE plan allows for savings beyond the typical asset limits without jeopardizing benefits. 
Andrew explains how understanding state-specific rules and investment options can provide a hopeful and clear path forward for families, easing the emotional and financial burdens that come with such diagnoses.

Protecting assets for children with autism is a crucial task for any parent, and Andrew lays out the importance of third-party special needs trusts in this episode. Learn how these trusts can ensure that assets are managed according to the parents' wishes without disqualifying the child from necessary aid. 
We also cover the role of professional trustees and the vital need for educating both clients and advisors to improve service quality. 
Through Andrew's expertise, we aim to inspire and reassure families, showing them that they are not alone on this challenging, yet hopeful, journey towards a secure financial future.

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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

Welcome to why Not Me, the World Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantra. Welcome to why Not Me the World. Today we are joined by Andrew Smith. He's a skilled financial planner with a focus on aiding families of autistic individuals and those with special needs. His wealth of information and commitment to improving the financial stability of these families make him a valuable resource and I'm pleased to have him as part of our conversation. So thanks for coming on. So I guess my first question is how did you find yourself getting into this line of work?

Speaker 2:

Yeah. So some of the first clients that I had were some good friends of mine. They have a daughter who has autism. She's about middle of the road of the spectrum. Obviously, the younger you are, the harder it is to tell where we're really at. So when we met man, she must have been about four. I think she's two years older than my oldest. And then I have some other friends too.

Speaker 2:

Their son is more medically complex, significantly, and so those two being some of the first clients that I had working in the financial advising space, I sought out somebody who had experience working with families who have special needs, disabilities. I found that the training that we go through, all of the licensing exams, all the studying and training we have to go through, we're working with all the intricacies that families who are figuring in SSI, ssdi, medicaid, some of the HCBS waivers, just all kinds of things, and then, adding on top of that all the difference of, hey, we're planning for different medical expenses and travel expenses just to and from the doctor I mean, you name it. All of a sudden there's all these different factors that are very different than just a neurotypical family.

Speaker 1:

Okay, so do you do more on the insurances or financial planning, or do you do both to help?

Speaker 2:

Yeah, so at the core, I am full financial planning. Any goal you're working towards I mean retirement's obviously a big one. Most people have Any financial goal. My goal is to help you, your family, become well-positioned to achieve your goals and have financial security in life now and in the future. We look at the spectrum on everything and look at all the tools and strategies out there to be able to help you accomplish that. No family whether you have special needs or disability considerations or not no two families really have the same plan. There's not a one size fits all.

Speaker 1:

Okay. So when you get into financial planning, I find that it's tough. Just for the neurotypical world it is. They're trying to just make it day to day paying their car bills, mortgages, food, just the everyday living. So after they pay all their bills, get everything taken care of. They look at what they've got. There's not a lot of disposable income there and this is just for normal, everyday, regular people that do not have any autistic or special needs. So how do you bridge that gap so that these people with the special needs can still move forward toward their future?

Speaker 2:

Yeah, I mean that's a great question, again, like everybody's different, right. And so incomes and what, like you said, disposable income, that's different for everybody. What we've realized, and probably doesn't take a whole lot of digging to realize it is you might have a family, as I call them. They fall into the gap where they don't qualify for benefits because they make too much, but because of the added expenses. There's a lot in this planning space that we do a lot of work where there's not really any money changing hands or anything that we're getting paid for. So it ends up being a lot of pro bono work and that's fine, right. I mean, obviously we have to pay the bills.

Speaker 2:

I have a family as well, three little ones, but my goal and my belief is that if I am helping people to the best of my ability, god takes care of me.

Speaker 2:

Right, as we start to plan for families, like you said, have these other expenses, have the other considerations of hey, maybe looking at social security, ssi or Medicaid, and then we have a cycle almost that the government puts you into because you can't start to accumulate assets, even if you have the ability to, right, or then you lose the benefit and then you're in that gap, and so that's a lot of what we do. Planning is saying how do we protect your government benefits without skirting the law, but using things that are in place that many people just don't know about? With that, how do we also help you prepare to potentially, depending upon your child's needs or disability, to potentially have a dependent for the rest of your life that needs some form of financial or physical care from you, not maybe just for the parent's life, but beyond their life. Right Today, especially on the autism spectrum and modern medicine as it is, many with special needs or disabilities are living close to that of typical lifespans.

Speaker 1:

Okay, so do you work for yourself or do you work for another company?

Speaker 2:

Yeah, so in this world, the financial advising, financial planning world kind of a little bit of both. So I have my own practice, but I am in association with Northwestern Mutual, but also, at least when it comes to the insurance side of things, also an independent broker, and so we have all of the tools essentially out there at our disposal to meet our clients' needs.

Speaker 1:

Okay, so you work with multiple companies and you can pick and choose. This way, you get the best fit.

Speaker 2:

Yep exactly.

Speaker 1:

Okay, so you brought up the government. How does the government play in for the financial part of the future, or how do they fit in for those people that need it at the moment, that have autistic children or special needs?

Speaker 2:

Yeah, another great question. So there's kind of a couple of phases in a child's life, right? So there's kind of a couple of phases in a child's life, right, when they're a child. If we're looking at government benefits, the biggest ones that are of question right are the means-tested programs, the ones that have income and asset eligibility limits, and so that would be something like Supplemental Security Income, ssi and Medicaid For those two when a child is under 18, so when they're still legally a child, everything is figured off of the parent's income and assets.

Speaker 2:

Now there isn't just a straight. Here's the number for income, but there is for assets. For assets it's a $2,000 limit. So if you have more than $2,000 in a savings account or among a savings and a checking account, you don't qualify. But when it comes to income it gets a little bit more complicated because it's based on the parent's income and their household size, and so a couple that has one child, their income would be different to make them qualify, to allow them to qualify, than a couple who has five children at the same income level. So as we're looking at that, we talk about families that are in the gap, we have families that are on extremes right, and then we have a large majority that are in the gap. We have families that are on extremes right, and then we have a large majority that are in that gap where, when it's based off of their income and assets, they might not qualify.

Speaker 2:

But there's the flip of a switch when the child turns 18 and legal becomes an adult, all right. Then everything shifts to that child who is now legally an adult. It shifts to their income and assets, and so there's two different kind of phases that you have to plan for. And then, all right, what are we able to do in either one of those phases? Typically, we're helping families prepare if their children are younger. Families prepare if their children are younger. Let's help you start preparing for that time when they could be eligible. If they're not now based on your income right, because a number of things could change that could suddenly make your child eligible. Your income could change. The laws, the income and the asset limits could change. The income limits regularly do change to keep up with the national poverty level, but the asset limit hasn't changed for a while, but they're working on changing that.

Speaker 1:

Okay, so to get this straight, the assets, which is money in the bank, if they have anything over $2,000, that will kick them out.

Speaker 2:

Yeah, so basically I mean it mostly figures like money in the bank or anything that's liquid form. They don't have one home and one vehicle per adult against them.

Speaker 1:

Okay. So if a person has $2,000. If they have $19.99, they're good, if they have $2,001, they're out. So to clarify this when you say eligible if they have $19.99, they are. If they have over $2,000, they're not. So what does this eligibility actually get them?

Speaker 2:

So again, that's a little bit based on the family. I mean, there are some standard numbers. I am not a social security expert so I don't really want to throw out any numbers, but it can be a few hundred bucks Kind of just depends on the circumstances and there's different qualifying factors that they take into account. There's also outside of those two things are you familiar with home and community-based services?

Speaker 1:

Yeah, I've heard of them.

Speaker 2:

From state to state because those are largely, like we're talking about, largely state-run programs, right, Like Medicaid is state-run. So it varies from state to state. Hcbs or home and community-based services waivers they might have different names in different states a little bit too, but essentially that waiver it waives that income asset limit, eligibility requirements, and so for some of those families that do fall into the gap where they're not eligible for SSI, you know, or Medicaid, they could potentially qualify for these services. And so some of what we do is just helping people know that those are out there and point it to the people who can help them see if they qualify, Aside from the actual financial piece that we do with people. A lot of times we're kind of like a first stop for individuals, like do you have a case manager? Yet there's a great resource for you. So we ask a number of questions that aren't necessarily directly but kind of indirectly related to their overall financial security. Okay, so what state are you in? So I'm based out of Wichita, kansas.

Speaker 1:

Can you help people that are outside of Kansas, or do you have to stay within the state or do you have people across the country?

Speaker 2:

No, we work with people all over the country. Okay, if it's a state that I'm not licensed in a certain insurance product, or if I'm not investment licensed in that state already, it's pretty quick and easy for me to take that up. So right now I'm not serving people in all 50 states, but a number of them, and so, yeah, that's something that it's really just a matter of applying for and sometimes a little bit of, maybe a training that you have to do to complete a license.

Speaker 1:

So what can parents do to really help themselves, so they are really protecting themselves, so they will be eligible for some of the services that you carry and allow them to take care of their autistic child at the same time?

Speaker 2:

Yeah. So there's lots of different tools and strategies out there that are designed to help parents supplement those benefits right Without affecting their eligibility. One of those maybe you've heard of, maybe you haven't, in the grand scheme of things, is still relatively new Experience Plan or, as you've heard it called, an ABLE plan or a 529A. These came out to help individuals who have a qualifying disability or special need, or family members of parents, grandparents, whoever to be able to supplement above and beyond what the government benefits provide. Are you familiar with those at all yet?

Speaker 1:

I've heard of it but I'm not really familiar. My podcast focuses on people and how they're living with their autism, or how they're dealing with their kids that have autism, or just how they're surviving day to day With that said, or just how they're surviving day to day With that said, this is the first time that I've delved into anything that's on the financial part of it, giving people hopes for the future with all these different programs that you offer. The tough part is they're struggling on a day-to-day basis trying to take care of their kids, trying to take care of their family, and it's really very, very tough. So when they're trying to move forward, it's a really really tough balancing act to take care of themselves the financial aspect and then still deal with all the doctors.

Speaker 2:

It is yeah.

Speaker 1:

If you're standing in front of a group of people they've got autistic children, they just found out they have autistic children or they're autistic themselves, can you help them? Yeah, what's the first step that you would take to help guide them to a better future?

Speaker 2:

Yeah, so if they've just had a diagnosis, that's pretty emotional state, typically for parents, and so the biggest thing that I start with is like you're about to be overwhelmed, if you aren't already, with a ton of information from all over the place. We can help you just one step at a time, right, you don't have to accomplish everything overnight, and so just one step at a time. Sometimes that's just take a little time to process, right, let's touch base, maybe in a few weeks or something like that. If they're really fresh, then it comes into okay, and the parents are ready. What do we need to do first? Typically, I'm like, hey, if you don't have case management yet, someone who's going to be in your corner pointing you in the right direction for any therapies that might help, whatever, right, let's get you connected. So someone locally there. But then, as we're talking about, obviously, what I specialize in, the financial part, what benefits are you receiving or are you eligible for or might be eligible for at some point in time? And then, how do we make sure that we protect that ability, that eligibility, for the rest of your child's life?

Speaker 2:

And so that ABLE plan that I mentioned, that's a tool that allows parents and or both, actually, and the child themselves, whether they're a child or an adult, to start saving beyond that $2,000 limit. It's got limits itself, but this was something created by the government to help them save, just like a neurotypical child can save, and so there's an overall balance limit of what's protected from that $2,000 asset limit. So anything right now in the year 2024, up to $100,000, they could have in that account. Now some people are going, wow, I probably never have that, but you can imagine saving over decades. You might end up getting closer and closer to that, and so you can have up to $100,000, whether it's from grandma, aunts, uncles, friends, birthday money, christmas money you name it right Going into this for your child. Yeah, it's all possible. Even when the child starts working, they could start putting some of their income into this as well. Up to that limit of $100,000 won't count against the $2,000 limit.

Speaker 1:

So that $100,000, that's not like a savings account, that's more like an investment 401k IRA. That's not like a savings account.

Speaker 2:

That's more like an investment 401k IRA, so it has the flexibility to do any of those. You could have it just be set on like a savings account very safe, no negative numbers, right, just kind of safe but low interest. Or you could do it more like an aggressive investment account, so it gives you that flexibility there.

Speaker 1:

Okay. So if they've got $1,000 sitting there in investments, how does that not affect their $2,000 cap that they'd be concerned about?

Speaker 2:

Because that's what that plan was created for.

Speaker 2:

So it's completely separate from the $2,000 then, yeah, so if you had 2,000, let's say 1,999 in a savings account you got no checking account or whatever, no cash anywhere else you could have $100,000 in this account If you had no money anywhere else. As many people will often, maybe even use this because you can get a debit card or even a checkbook with this, they might say, hey, let's not have anything else, anything else, right. So you could technically have up to 102 000 before you leave that eligibility, before you go over the limit okay, but do they have to be separate accounts?

Speaker 2:

um, yeah, so this would be a separate account. So, like are you familiar with, like a 529 college plan? Yeah, sure, yeah, so this is a 529A, those are a 529C, and so it's a separate account that you create, and you don't even do it through a financial advisor like myself, you do it right through the state website.

Speaker 1:

Okay.

Speaker 2:

And you are able to go like, if you live in Tennessee but you want to get one in Kansas because you like theirs better, know in Tennessee but you want to get one in Kansas because you like theirs better, most states, or at least many of them, offer a non-resident to get one in their state.

Speaker 2:

You kind of got to look because every state has a little bit different rules on it. One of the biggest things that I encourage people to look at is how Medicaid treats the account in their state. When the beneficiary of the account or the holder of the account so this would be in this case it would be the disabled or a child who has a special need when they pass away, how does Medicaid handle that? So in most of the states Medicaid handles that like they do any other dollars, whether it be for an elderly or someone disabled or someone below the poverty line who's receiving Medicaid. If there's any money or assets left, medicaid will do up to a five-year look back for any expenses they've paid and they could claw back, as we call it. They could take money back from what's left over claw back, as we call it.

Speaker 1:

They could take money back from what's left over.

Speaker 2:

Right, okay, most states, medicaid will do that with an ABLE account, but there's about, I think, six now who've passed laws, kansas being one of them. They passed a law that says Medicaid can't do that if it's a Kansas ABLE claim. Okay, so those are some things to just look at. Call the state treasurer who runs these programs Right and ask them these questions.

Speaker 1:

Okay, so now, where you get into this insurance and, of course, some of these other products that you might sell. So one of the biggest concerns that I hear from most all the parents I speak with what happens to my child if I'm not here, right? So what can you do to help them? Because, unfortunately, when they're talking about this, we have to look at the ultimate worst case scenario.

Speaker 2:

Yeah, yeah.

Speaker 1:

So in this case we're looking at an autistic child that if their parents are gone, they don't know what to do. They can't live by themselves like some can. So this is the ultimate, worst case scenario. The child may be left by themselves, not have any family they can step up and help them, or no family at all. They don't want their child going into a state facility. They don't want their child going into a place. That's just not good for them. So it's a really valid concern that they have. So their main concern is having something in place so their child can live a good life, and that's scary to them, right? So do you have something that you can do that can help them with that?

Speaker 2:

Yeah, no, that's a great question. We see the same thing, right, that's the number one fear that we hear from penances. What do you do? Right, so you know an able plan can help with some of that. Right, you're gone, you've saved up a little bit, okay, but it has limits. In the grand scheme of things, especially, we're looking, you know, down the road. Hopefully that limit of $100,000 will continue to go up, with inflation potentially, but if it doesn't, 20 years down the road $100,000 is like $50,000. How long will that get? Yeah, we pass away today and our child lives. Another 50 years or more Doesn't last very long, right, even if invested properly, right, but a lot of times we're looking to another tool that can help provide a place for assets to go, and that would be maybe you've heard of a third-party special needs trust. That's something that you've heard a little bit about before.

Speaker 1:

Yeah, I'm a little familiar with some trusts.

Speaker 2:

Yeah, just like any trust, third-party special needs trust or you might hear them called their formal name is a Third Party Supplemental Trust, because they're typically used in exactly what we're talking about. They've just more commonly been called a Third Party Special Needs Trust. What this does? It functions like many trusts do, where it provides a place to receive assets that can be used exactly how you want them to be right. You work with a qualified attorney particularly for this. You want to work with an attorney who has experience with these trusts, not just any attorney.

Speaker 1:

So is it like a revocable living will trust? Yeah, very similar. It can change until you're not there.

Speaker 2:

Yeah, yeah. And so with these, the idea is protect those government benefits, right, because the parents gone. Right, they really need the benefits now If they didn't already need them now they really need them. But usually that benefit's going to provide the bare minimum. Every parent I've ever met, whether their child is neurotypical or not, wants their child to have above the bare minimum life. And so how do we protect that? Well, if you have any assets at all, you can create a special needs trust with a qualified attorney. That's where everything goes right. So protecting those benefits means protecting.

Speaker 2:

You can't have your child, if they need to receive benefits, be the beneficiary of anything anymore, right?

Speaker 2:

Unless your insurance policy on your life is under $2,000, which isn't going to do much for them anyways.

Speaker 2:

So it's very common for parents to have 250,000 of life insurance, 500,000 of life insurance, a million of life insurance right, the ABLE account can't receive that because the ABLE account can't be a beneficiary on anything and if you name your child as the beneficiary, that disqualifies them for the government benefits. But special needs trust, you create that Now. That can be the beneficiary on your life insurance or one of the beneficiaries of your life insurance. It can be the beneficiary of your 401k, your ira. You can assign the deed at your death to transfer to that special needs trust for your home, for your car, what you know. You name it because the special needs trust can carry its own tax ID number. It basically becomes the child, if you will, that receives everything, the beneficiary of everything. And so, although it can be used and will be used according to your wishes, how you've designed it in that will or in that trust with the attorney, it won't actually be in that child's name.

Speaker 1:

Okay, so the trust gets the money. Let's say that trust gets half a million dollars. Can that trust be put into like a CD or a bank or anything along that line? That's a little bit safer. So that way they always have it there when they need it. Yep, they gain interest on it, so it's not at risk at all as it's gaining money and growing. How does that work so they can use it for their benefit but yet still have it, so that it doesn't kick them out of the government program that they've been in?

Speaker 2:

Yeah, great question. So I mean, it takes being very intentional. Right, You're not just popping out thousands of dollars, but the trust can now become the payer of housing, right, the payer of different things, whatever it might be the normal expenses, right, the trust is now paying these things and so it's never actually going to the child before it goes out.

Speaker 1:

Okay. So basically you're making sure that that child never receives any money, but yet the bills get paid, right? So basically, as long as the child doesn't get any money, it's okay, right?

Speaker 2:

It's like the parent is still there, providing them a home, right. The parent's still taking care of and managing things even after they're not around, and that's all carried out through a trustee that the parent names Often. We recommend hey, name a professional trustee, like they have those at banks, a corporate trustee, someone that has no skin in the game. I mean, you're going to pay for that, but the trust can pay that right, and so you write that into the trust.

Speaker 1:

Right. So if you're making decent money off the interest, because every state is different on what a trustee gets paid, a lot of states are just basically so much an hour for the time that they put in, they get paid Right. So it's not high-end money where they're getting thousands and thousands of dollars taken out of the trust.

Speaker 2:

Yeah, and then you get to avoid the. I mean, man, if someone passes away, emotions are high. We know how families are just in general. Right, you avoid that conflict of. Why didn't you pick me? Obviously, funds can always be mismanaged. Even the money could be gone before someone catches on.

Speaker 1:

That it's being mismanaged by the wrong person, it helps avoid it. Managed by the wrong person, it helps avoid it, you know. So is this trust set up like it's only going to take care of that child? So let's say a parent should happen to have two children in the family yeah, one's neurotypical and one's autistic Would they have to set up two different trusts? Let's say they have a million dollars. They want half to go to one, half to the other. Would they have to have two trusts? Or they could set that up within a will, within that same trust, so that it all works out.

Speaker 2:

It kind of depends on the complexity and the assets they have. There are still some circumstances again not being an attorney myself there are some circumstances where wills still accomplish what you might want it to, but these days wills just seem to accomplish a lot less or they get things tied up in probate for a long time that you might want to avoid. So it is common for many families that we work with if they have a neurotypical child or children and a child with special needs, that we need the special needs trust for it's common for them to create an estate trust that might be the beneficiary of everything and then from that estate trust that catches everything, the language is created that a third or a half or whatever they decide, goes to the special needs trust upon the parent's passing.

Speaker 1:

Okay, so in that scenario it would probably be better for them to have two separate trusts one for the one that's autistic, one for the other child. Some trusts now are set up so that they have a will within the trust and if anyone challenges that will they lose everything they would have gotten.

Speaker 2:

You're trying to avoid people fighting about stuff.

Speaker 1:

Exactly. That's why it's set up that way, so that people don't fight about it. If they do, then they lose what they would have gotten. Yeah, so is this something that could be set up within that type of trust, so that it would help both the neurotypical and the autistic child, so they could both move on with their life?

Speaker 2:

Theoretically, yeah right, when you're working with a good attorney, the sky's the limit. That's where having the right team is so imperative. We're just one piece of the puzzle. We help connect people with people we know are qualified, who've done this. You don't want to be the first special needs trust that an attorney is working on, unless they're working with someone who's done in 20, 40, 100, you know. And then we help figure out, hey, how to fund the special needs trust.

Speaker 2:

So far we've kind of talked about what if they pass away. Then there's another spectrum of families who are saying, hey, you know, we make good money but we still, like, we want to protect everything, right, and so how do we supplement? We've maxed out the ABLE account, our kid's still young, whatever right, so in that case they might move into in their lifetime. We're opening up accounts that the trust owns could be used for their benefit or something. So I mean again, guys, the limit to a point on how these could be used and how you set them up. And you're going to work, parents are going to work with their attorney to create it, to do exactly what they want it to do.

Speaker 1:

Yeah, yeah, that's good. So how do people get in touch with you if they've got questions?

Speaker 2:

Yeah, my number is 316-266-5076. Or they can email me at andrew. smit@nm. com, which is S-M-I-D-T, at N-M. N as in Nancy, m as in Mary dot com. Or I bet you can connect with Tony and he can connect us from there.

Speaker 1:

That's right, Exactly Well. I really appreciate you coming on. This is a great amount of information.

Speaker 2:

Yeah, I'm happy to do it. I think, unfortunately in my time in the industry, like I said, there's just not enough advisors out there know how to plan this way Right and we run into so many circumstances where, for lack of experience and knowledge in that area, they've been given some bad advice.

Speaker 1:

Yeah, that's sad.

Speaker 2:

And we're having to start behind the eight ball or play some catch up or undo some things that were done incorrectly. If we're able to help people out whether or not they become clients of mine at the end of the day if we can help people, even advisors, to learn more about this space, to better serve, it's a win for me.

Speaker 1:

Absolutely A win for everyone. So thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.