Transcript of the podcast:
BOB DILAURA: And that phone call—it still rings in my mind, and I'm still chilled when I think about it. It literally changed our lives from that moment forward.
MARK RIEPE: Meet Bob.
BOB: This is Bob Dilaura. I'm in Castle Rock, Colorado.
MARK: Bob is a Chartered Special Needs Consultant, and he works with us here at Schwab—and he's had an interesting life. In this episode, we'll hear Bob's story and some key lessons about planning for the worst that you can apply to your own life.
I'm Mark Riepe, and this is Financial Decoder, an original podcast from Charles Schwab. It's a show about financial decision-making and the cognitive and emotional biases that can cloud our judgment.
And today's episode touches on the deepest emotions.
Bob grew up in Michigan.
BOB: I was born and raised in Detroit, literally born and raised. And my first job, even right out of high school, was working in the factory at Ford Motor Company, and my dad thought I was a big success in life.
I was working on the assembly line at Ford Motor Company, and the guy working across from me said, "Hey, isn't this great?" And I said, "Hey, how long have you worked here?" He said, "30 years." I said, "And what did you do here?" And he said, "I worked here for 30 years on the assembly line in the same job for 30 years," and my brain kind of exploded, and I said, "This cannot be what life is all about."
MARK: Bob left the factory life behind and got a science degree from Michigan State University.
BOB: I worked for years there in Michigan, and then eventually moving down to Texas. I was actually a polymer chemist, and that's where I started to cut my teeth and working, working, working after I graduated from college, which I thought was great. Now I'm all set in life. And then I realized there was still more stuff to do in life.
So I ended up, when I was living in Texas outside of Dallas, I went to the University of Dallas and got a master's degree in international business.
MARK: Bob's wife was from Colorado, so they ended up moving there and starting a family.
BOB: Our kids were growing until you know—we were getting them through school—until the graduation day of kindergarten for our youngest, who was around six years old at that time, when we got the phone call.
So our son's graduation from kindergarten, and it's the frantic phone call. "Oh my gosh. Oh my gosh. Something happened. Oh my gosh." And it was that our son was involved in an accident where he had a head injury.
MARK: This was the day that would change Bob's family forever. He and his wife needed to rapidly try to make sense of what had happened and what the future might hold. This is complicated at the best of times, but Bob was also in the midst of finishing a doctorate in artificial intelligence.
BOB: And so while our son had this accident, went into the hospital, I was literally finishing my dissertation in his hospital room as he was getting taken care of.
Some people describe, you know, when you face this kind of shock of a disability from an accident because, you know, disabilities can come from a lot of different directions. In this case, it's almost that reaction of disbelief, and you can say, "This isn't possible. This can't be happening." I remember saying that.
MARK: But of course, it was happening. Bob and his wife spent two months living in the hospital while their son was unconscious and slowly recovering.
BOB: And I remember one night in the hospital talking with my wife and just saying, "You know, look, this is, this is, I can't imagine what, what has just happened to us. But you know, either you let something like this just crush you or it's a gut check," and that was the conversation we had one night, about a month in, and I said, "Somehow, I don't know how, but we're going to hold this in a positive light. I'm not going to hold this experience negatively. Somehow we'll figure out how to take care of our son and take care of our own lives."
MARK: To make matters worse, this was at the height of the dot-com bubble bursting. Bob lost his technology job and his shot at a lucrative IPO. So he was also looking around for a new career.
BOB: I ended up, because I was a process engineer in my earlier years, helping companies to make improvements. After living in the hospital for two months with our son, I started to notice the doctors, the nurses, the labs, they didn't work very efficiently together, and so I started to make recommendations to them.
MARK: The recommendations weren't exactly well-received at first, but he persisted.
Even at one point, my wife was just rolling her eyes. I made a flow chart of how things were working every day for us and how it was very inefficient.
And literally it ended up, when we left, we had met enough doctors and nurses and hospital staff, they ended up—knowing I was unemployed—they offered me a job. And that was a career change.
They brought me on board to help them improve their technology processes for clinical research at Children's Hospital of Denver. I became the head of technology in pediatric clinical research. Go figure out how can that possibly happen.
MARK: Bob ended up working as a very senior technology leader for hospitals across the United States before he shifted to a role in financial services. And today we're going to be speaking with him in depth about what happens if your family is affected by a disability, and what are some of the financial options that can help.
So this episode isn't about an emotional bias per se, but rather a look at some of the financial protections you should be putting in place now for yourself or if you are taking care of someone with a disability.
This could be a child, partner, sibling, parent, grandchild, friend—or it could be you. In fact, people with disabilities aren't as rare as you might think. According to the Annual Report on People with Disabilities in America for 2023, an estimated 13.5% of the population have disabilities.
And this experience in life can be overwhelming. The powerful emotional toll is obvious, but an event like this opens up a door to all kinds of specialized financial tools, which can be helpful if you know they exist and how to use them.
In addition, the financial costs are complex and highly variable. Minimum estimates put the cost to raise a disabled child to age 17 at $233,000. However, the National Autism Organization puts that estimate at closer to between $1.4 and $2.4 million over a lifetime, either out-of-pocket or through various insurance and federal/state programs.
Not surprisingly, the more severe the disability, the higher the cost. The National Disability Institute estimates it takes 28% more income to obtain the same standard of living as a household with no disability. This works out to be, on average, an additional $17,690 per year.
The good news is that Bob Dilaura is here to help make sense of all this.
Bob is a senior financial planner at Schwab and is a Chartered Special Needs Consultant from the American College of Financial Services. It's the only credential designed to prepare financial advisors to help people with special needs. So when you are looking for a planner to help you with a disabled family member, this designation ensures your advisor understands what you are facing and knows how to help.
Bob is also an Accredited Estate Planner® and a Certified Trust and Fiduciary Advisor, disciplines closely related to financial planning for special needs.
Bob Dilaura, thanks for being here today.
BOB: Hey, Mark, thanks. Good to be here.
MARK: Bob, we just heard great, great story of how you got here and your son Jason and his situation. How's he doing today?
BOB: Yeah, thanks for asking. He is a huge success story. If you met him on the street, you wouldn't see any visible disability. And yet he is disabled, and we deal with it every day. But he's become aware of his own life situation. And he's on top of it. But he is just a stellar kid. People love him where he works. And we're always just smiling because he's a real success.
MARK: Bob, obviously this would be a very emotional situation for a lot of people. So how do you approach that? Just the emotional weight when you're first sitting down with a client, I mean, you know, we both know—financial planning, wealth management—it requires a certain level of trust in the person we work with. How do you build that trust? Are people reluctant to disclose the situation that they're facing when they're first sitting down with you?
BOB: Yeah, great question. For people with special needs—maybe it's individuals who are disabled or their parents—we have to first get our heads around that term "disability," which can be a label. There can be some discrimination that is associated with that, even some emotional reaction from people that research has shown. There can be some shame or embarrassment or even depression when a disability exists in a family, for family members, even siblings, not just the disabled person. A disability is a specific term that's written into regulations and laws. It's a medical determination. I don't like to wake up early in the morning. That doesn't mean I'm disabled. But for some people, it's subtleties that may get tested and defined as a medical determination. That is protected health information. And people have a right to privacy and confidentiality and to not share that. And for people not to know it, and that's OK. That's legally protected. So sometimes it's difficult to know.
And I wouldn't normally ask that question, except here's this little story for you. I was working with a client, and we were on a video conference and building her financial plan. And all of a sudden, in the background, I noticed a teenager waving his arms that ran across about 10 feet from left to right. And I stopped and wondered, "OK. What just happened?" And about 10 minutes later, zoom. Another young man running across the screen behind her, 10 feet, waving his arms. I finally stopped and said, "Um, is everything OK? I mean, what's going on there?" She said, "Oh, that's just my son," and didn't blink, and we kept going. Now, that was a clue to me that I picked up on, and I started to tell her about my son and his disability and how he lives with us and the way we process this environment in our home. And she said, and we talked for about five minutes, a very personal conversation about our lives and our kids, and it was a very strong connection. Her son was disabled. This was a particular disability, and that's just the way he acted. She had accommodated that, and that was the normal for her. So sometimes we find it out indirectly like that. It's sometimes rare for a client to disclose that up front.
MARK: Bob, disabilities as you were just describing with that story as well as your own son's situation, these disabilities come in various forms. Some are visible. Some are not visible. Paint a picture for us of the landscape, if you will, and the wide variety of situations that are out there.
BOB: Sure. First of all, I would like to say that there are different words or terms that are used, and this is a bit of a controversy. It's great social media grist in this space. The word disability or sometimes it's referred to as special needs or someone who is incapacitated or a handicap or an impairment. So it can be debated, and I'll try to be consistent with using the word disability, and sometimes we try to keep the person first. It's an individual who may have a disability. So just using that as the framework for our language.
There's generally four groups of disabilities. The first is, as you mentioned, Mark, physical disability. This might be if someone has muscular dystrophy, multiple sclerosis, CP, things like that where you can see it.
But the other ones are tougher to even know. If you were talking with my son right next to us, you really wouldn't know he was disabled. This could be sometimes things that we refer to as IDD, or intellectual and developmental disabilities. These can be things like autism, learning disabilities, dyslexia, dyspraxia—these are all kinds of different medical terms—but you can't see it. And unless they exhibit some kind of behavior, you'd never know that they just may not process information the way you do. They may not be able to speak based on what's in their head the way that we do. That would be the second category.
Third is behavioral disorders. Again, this is the brain usually exhibiting the way people say or outbursts that they make. This could be sometimes OCD or ADHD, which some people have heard and often medications are treatments there.
And the last is sensory impairments. Which may be related to vision or hearing, all the way from limitations to full-on blindness or someone who's deaf. And so that's kind of the fourth category.
I would like to add one last thing. This has been evolving over decades from like the 1970s to the 1990s. And it's now falling under an umbrella, which was the acronym is IDEA, the Individuals with Disabilities Education Act, IDEA. This says that particularly in that time in life for a disabled person, when they're going through school, this is a critical time period, and now there are legal services and benefits that are available while people are in school through usually graduation of high school. The IDEA says there's 14 categories, and you have to be in one of them with a medical diagnosis for the school to open the doors to all types of free and appropriate public education.
MARK: Bob, given the 14 categories and the four types that you laid out, I'm guessing that there's a spectrum of, I don't know, let's call it severity, where some people are able to live very long, successful lives. Other people, they require a lot more help. As you were talking about also, people's willingness to … kind of disclose their situation. What's been your experience there?
BOB: Um, yeah, I would say generally people are a little sensitive about this. Um, but there are some very public figures that have shared this information, and it resonates with people to know that disabilities aren't necessarily something that's unusual. It's actually fairly prevalent. Uh, if I could, let me just kind of review quickly some well-known names of people with disabilities that people may not be aware of because it may not be something you could see or you would ever know.
The first one I like to refer to is Harry Potter, exactly. So this is Daniel Radcliffe. He disclosed, after his tremendous success in that whole series, that he has what's known as dyspraxia. So it's a challenge in moving and how he communicates with others. Daryl Hannah is autistic, so she's on the spectrum, with a level of difficulty that she's learned to manage, and then she's gone forward and had a tremendous career. Will Smith, ADHD, has been one of those disabilities that he has publicly disclosed.
And then, Mark, maybe here's a pop quiz for you or for our listeners. What does Tom Cruise, Cher, and Charles Schwab all have in common?
MARK: I think I know the answer to that one. I'm going with dyslexia.
BOB: They have all a learning disability referred to as dyslexia. So it's a challenge in the way that people process information and language in particular, including writing or reading. And so as you notice, again, lots of people can have this, and it doesn't mean that they can't be very successful in life. I sometimes say, "Disability does not equal incompetence." It doesn't mean that somebody can't be very successful in life and be able to do all kinds of things.
Let me mention one last thing. This is kind of interesting. This has been very topical. A couple weeks ago, literally from this time we're recording, there was a movie that was released by Apple TV regarding Michael J. Fox from all the Back to the Future movies, a tremendous acting career. This movie is called Still. He in his 20s discovered from the twitching of his pinky that he had something going on, and he disclosed—after decades of figuring out how to deal with it—he has Parkinson's disease. The fact that he disclosed that and how he dealt with it and still went on to be tremendously successful bringing awareness and literally raising billions of dollars for Parkinson's research, that's a movie well worth watching. So it doesn't mean, again, a disability is something that's bad. It's just something that people have to make adjustments for. They can still be very successful.
MARK: We're going to get into the kind of the financial aspects of this in a second, but before we do that, one more question, Bob. Is there a resource, a starting point, 800 number, website where people who are just coming really at the beginning of this journey that they're coming to grips with that they can go to to get a kind of a broader picture of everything that's involved with this?
BOB: Well, you wish. Whenever a disability is diagnosed, detected, or happens in an unsuspecting way, you are thrust into very deep water very fast. So parents have to learn how to process tons of information while providing care for the disabled person and still trying to work and not take off too much time for all the treatment and to earn a living all at the same time. So there's no one source that you can call. If anything, there's what I like to refer to as TMI. There's too much information. If you did an internet search, there are so many websites, organization, benefit programs, books, and research, you will get buried beyond the medical challenges you face. So it's really too much.
So here's what I would suggest. Think of a wheel. The parent has to be the hub of a wheel that must connect well and communicate and work with a whole series of people in your care team or your network. So this could be the doctors and nurses, therapists and social workers, government, program personnel you have to work with, attorneys or tax specialists or financial planners. All of these are essential. And yet there's what I call a care team paradox. If I were to ask my neurologist about our son, and if I were to ask him, "Hey, doc, what's the best government eligibility program? What has the easiest eligibility requirements? Is it SSI or SSDI?" He'd look at me like, "I don't have a clue. I don't even know who you should call." So even though each of them are experts and I need all of them, they don't all work seamlessly together. So I have to have those connections, pull them all together so that our particular needs are being met and somehow coordinate all of that together.
MARK: So let's maybe narrow the scope here a little bit. For someone who might be caring for a disabled family member, maybe a newly family member who's just kind of discovered a disability, where should they start in terms of the financial aspects of this? How should they reach out to an advisor or a planner? Maybe they already have one, but now because of the situation, they've got bigger concerns than just, you know, retirement planning or college planning. How do you get started on that?
BOB: Yeah, so first I would say there is a path, there is a river that kind of flows where your lives financially unfold and things happen and finances are a piece of people's lives. But when an individual with a disability comes into that setting, it has to somehow run in parallel. And I would say there's general phases that are involved there, some of which I've talked about. You've got to discover as early as possible—what is the disability? Try to get treatment for that, right? So you just have to accommodate that. And in some cases, that involves money, right? There are insurance questions that have to do with that, or some things that are not covered by insurance. So that first phase has to get done.
The educational setting would be the second. You have to get kids through learning as much as they're able to learn as well as they can. Again, this may require some time, may require some costs. Things we did with our son was additional technology. Maybe we could help him learn at home. Maybe there's stuff he does over the summer, all of which ties to—there is an expense for these things. So that has to be part of what we're doing.
The third phase of these five that I would say has to do with a work environment for the disabled individual, once they get past school. Now you've got a transition to make. What does that look like? Are they able to work? Are they able to be hired or interviewed? Whole separate program to be done on that. But they are able to do whatever, and sometimes it evolves for them to be able to do better and better at earning something, which may not be about the income. But it's about their interaction with a work environment and with others.
Fourth of those five areas would be regarding living. Maybe, and in many cases, clients I work with, the individual who's disabled is living at home with mom and dad. And that's fine. That's very common. But eventually, maybe there's a question of independence, and maybe they don't want to be living at home anymore for various reasons, right? This can be a love-hate relationship. So you have to figure that out. What's work going to look like, and are they able to earn income or get enough government benefits to be able to afford to move out?
And the last would be what does life look like after mom and dad also are not able to take good care of themselves or pass away? And that is a real challenging area to talk about. Let me add a quick story here. I was talking with a client. We were building a financial plan. She had specific questions about long-term care. And so I was talking to her and we were going over how's long-term care work and the costs and what's she going do with her home. And as we were talking, I noticed in our systems that there was a gentleman with the same last name who had the same address living at home. Now this lady was getting to be a bit elderly, and so as I asked about that, and she goes, "Oh that's not my husband. That's my son."
Now this is where sometimes Social Security refers to as an adult child. It's not just kids who have disabilities and special needs. We often talk about that, but they eventually grow up, and they get out of school. And they often are living at home for decades. It doesn't mean that they aren't going to live a long life. Well, she was facing the challenge of, "How do I transition out of my home into long-term care, including possibly selling my house, and how does that impact my son?" That was a challenging conversation, but that's the things that we work through.
MARK: And when we think of these at the surface level, almost as initially as a medical situation, but in all those examples you gave, all these situations have kind of profound financial implications for people, right?
BOB: That's right. Yeah, that's exactly correct. No easy answers.
Sometimes I would say, Mark, that, "Well, we can't fix the disability, but we can help you to figure out how to incorporate that and accommodate it within your financial abilities and make adjustments accordingly." So that the conversation is often creative and unique.
MARK: Bob, the financial services industry and the legal profession, they're very good at creating lots of different special accounts and special types of trusts for people in particular unique situations, and one of those is the special needs trust. We talked about it, I don't know, about a year and a half ago on this show very briefly. So maybe just kind of give me the rundown of what is a special needs trust.
BOB: Sure, let's start there. The special needs trust is a unique kind of legal tool that requires an attorney to create. It has quite a bit of complexity around it, but it's a very powerful tool. The importance is—that's a way that the child can have assets, but those assets don't work against the benefit of the child where there are government programs that may be able to create an income for their lives or provide medical insurance for their lives. Often holding assets in a special needs trust is beneficial. So where there are cases where parents may want to set money aside for their son or daughter, they can fund it potentially through a special needs trust.
At the same time, that also means they are now on the hook to understand how to administer a special needs trust. Who's going to be a trustee, and what are all the rules that apply, as well as having costs over time that will have to be incurred just for the taxation of a special needs trust or for any modification. So where it's appropriate, there has to be an attorney involved, usually one who has particular training in the ADA at a national level. They have a whole group of special needs attorneys who do that work and can get one set up where needed. At the same time, there are risks. You don't want to just do that and assume everything will be fine. There are challenges where things that are done in a special needs trust can cause other problems. I probably talk to 50 different attorneys who specialize in special needs issues with disabled people, and they would say there's a time and a place for a special needs trust. Sometimes that's not the greatest tool.
So there are lots of other tools. I'll list a few of them just as a reference. One would be an ABLE account, which is an alternative that was created just around 10 years ago as another way to be able to save money, not lose government benefits, and be way easier to start and to manage. The government runs a really good website that's worth looking at. It's called benefits.gov, benefits.gov. You can go there and run their benefit estimator or calculator and see, based on the disability, are you able to collect some government benefits, some income for life or medical insurance? And it will run through a tool to show you what's possible for you to collect from Social Security, Social Security Disability as an insurance or income tied to Medicare or Supplemental Security Income, run through Social Security at the state level that can also provide some income. But you have to always play whack-a-mole, like I like to say. Sometimes the benefits that people get come with a gotcha, kind of a catch-22, which may lose eligibility of certain benefits if you have too much money, too many assets, too much income.
Let me just add three other tools, maybe four other tools, that sometimes come into play. The first is there may be a need, again, from a legal process to have a guardian, especially when a child is over 18 or over 21. Run at the state level in a local court, it's a finding to say, "Well, our son or daughter with a disability just isn't able to manage themselves or finances or their own accounts." You could become a guardian or a conservator that could manage those things. That's a request to a court, and the court would go through that. Often again an attorney would be involved because it is a legal process.
The last three I would mention is—there are things that are called a life care plan. That is, if someone stepped in, if something happened to me, and someone had to step into my shoes, now my wife would obviously be able to handle things. But even she would admit she doesn't know everything that I do or have all the information I have to take care of our son. So a life care plan could be literally 50 or 60 pages of every detail of what we're doing to take care of our individual with disabilities. Now it's hard to do; that's almost too much detail. So from a life care plan, it's gotten scaled down where some people have what we would refer to as a letter of intent. If something happened to me, here's what I'd like to happen for my son or daughter that has a disability. Much shorter, two or three pages. It's like a final letter of intent.
But the one that I want to specifically mention, in the last three or four years, this has been one that I really see tremendous value in. It's not real long, but it is also highly tailored to the individual and their needs, and it brings in—what's their living situation, what's their healthcare situation, how are they connected in the local community, and who's going to be providing support if needed? That's referred to now as a personal support plan. It's meant to be reviewed every year and see what works for them. So it's not just theoretically how things are going to go and somebody should look at it, that's put on a shelf. But this is really a working document uniquely tailored to them based on what works for them. So that might be eight to 10 pages. And again, that's a much more modern version of how to best care for somebody.
MARK RIEPE: So Bob, life care plan, letter of intent, personal support plan—are these legal documents or are these kind of, you know, sort of guidebooks, but they're not, you know, kind of legally binding in the same way, you know, that a will might be?
BOB: Yeah, exactly. Yeah, these are more guidance documents. It's really a parent saying, "OK, look, here's what I'm doing. Here's what the situation is. Eventually, I'm not going to be here, right?" That's the whole, you know, dynamic of a will. So it's really the handoff, whether it's a guardianship, which would be a legal connection. I have to report every year to the courts in my role as a guardian, right? And attorneys would have to be involved if there's going to be unique changes there. My son could even appear to court and have his own attorney if he thought that I was doing something that was inappropriate for him. So some of those have legal oversight and require legal construction. But in general, that adds a level of complexity. So where possible, it'd be great if it could be easier and less costly.
MARK: How do you go about selecting a guardian in a case like, you know—I 've got kids. We put together, you know, some estate-planning documents. It was fairly easy to figure out the guardian situation if that were to come to pass. My guessing it may be a little bit more complex in the situations we're discussing here. So what's your advice there?
BOB: Yeah, I would certainly, you know, touch base with an attorney. This is their wheelhouse, and they will walk through the pros and cons, what makes a good one, what doesn't make a good one. There was a whole bunch of training I had to go through to understand the process. And you have to legally petition the court and request to take control over this person's rights. And so we argued because of the disability that our son had, this was the right thing to do. And with all the forms and the proceedings and, you know, it could be six to twelve months of wrangling through even an appearance in court with our son where they give that as discretion and freedom that was transferred, but theoretically it could go back to him if that was not needed anymore. So I have to re-prove that on a regular basis. It could be parents. It could be an attorney. It could be someone who you just trust, who understands and is willing to make that kind of commitment. There are people who are professionals that do this, but there is a cost for doing that.
MARK: I'm going to go back to the back to the ABLE account. Maybe give me a little bit of detail as to what you think the profile is for someone where that type of account makes sense.
BOB: Yeah, that's a great question. Literally, this was created as an offshoot. There was some individuals who were saying, "You know what? I just don't have a lot of money, but if I have over $2,000 in a checking account, I lose my eligibility for SSI benefits." And it's like, that shouldn't be something that's right. They require now, again, people who are disabled to go and try to work to be able to be eligible for benefits, but you can't earn too much money, otherwise you become ineligible for those benefits. What a catch-22 for people.
So an ABLE account was created to keep it simple, to keep it low cost, to keep it out of the legal framework, and to say, "How could I save money just by setting up an account that would have those kinds of protections?" This is something that's run at a state level. It's very similar to what some people know as a 529 account. This is a college savings account where you could put money in an account up to a certain amount every year. You can't just jam a million dollars in this if you're a rich person for your kids. But up to a certain amount, you can save money. And like a 529 educational savings account, if you spend that money for educational, qualified expenses, then the money that was donated and the growth of that money is basically tax free. So in a 529, that's great. So they leverage the 529 model, and it's now referred to as a 529A account, which is an ABLE account—that stands for Achieving a Better Life Experience.
It's able to use money to pay for things like housing and food of the disabled person. You can do that from an ABLE account, whereas from a special needs trust, if you make what are called in-kind support and maintenance, that is periodically give money to the beneficiary of a special needs trust, that is counted as income and can make them ineligible for getting government benefits. But from an ABLE account you can do that.
Last couple things I'll say again, you know, the tax benefits are there. Anyone can make contributions—mom, dad, grandma, friends—you throw money in the account. It's run at a state level. Most states will have these. And even if a state didn't have one, they could get one in a state that has one. So for us, somebody who was living in Idaho, which may not have, actually I don't think they do have a state-based ABLE account, they could start an ABLE account for their child who's disabled with a Colorado ABLE account that's recognized in Idaho. So up to a certain level, you can put money into those, but the government also puts limits on how much those accounts can hold. And if you—catch-22—have over $100,000 in that account, sorry, you're going to lose some of your government benefits. That's just the limit that they apply.
MARK: Bob, let's imagine I'm the primary caretaker of a person with disabilities or a person with special needs. I've made an appointment with a financial advisor. What should I put on my checklist? How should I prepare for that conversation in a way that's going to be the most productive?
BOB: What I would say first of all—all people should have a financial plan and lay the groundwork for the basics. So this is things like have your career on track, have a budget, be living within your budget, have some emergency savings, keep your debt in check. Save for retirement, right? These are real basic stuff, right? One of the facts that we often run into as a financial planner like myself, the statistic is—of all the people that die in the United States, about half of them don't even have a will. That is a big issue, and it creates legal problems and how you transfer assets. So we would say get those basic things in place because you never know when they will be important and what will be needed.
But I would say this—the unique aspect that comes into play for someone where there is an individual with a disability living there is, which of the income or the savings or checking or investment account or the assets that you have, we can easily put that into your financial plan. But are those your assets or are they assets of the disabled person? Often these things are co-mingled. On the surface it seems to not be an issue. But, for example, with Social Security Disability Income, a parent may be named as a designated beneficiary receiving government benefits on behalf of the individual who's disabled. They often count that as their money. Theoretically, they're using it for the benefit of the son or the daughter. And so it often gets entangled. It's often gray. So I would say just be aware that there are some things that are yours. There are some things that are theirs. And even, and this is a stretch for some parents to realize, your son or daughter may have their own goals that aren't your goals in life. Your own financial goals and your own non-financial goals may be living independently or traveling or having a pet. We have to also respect those. Those don't all fall neatly into one bucket and one financial plan.
The last thing I would say is—this is a really important point—and that is people often have a time horizon on investments that they're making or even their life expectancy. That's how we build financial plans. When there is an individual with a disability living with you, you have to stretch that timeline. You have to plan for what's going to be happening and money that will be available or income or a living circumstance after I'm dead. That should be built into your financial plan for the benefit of your son or daughter. That's not usually done. Even software sometimes doesn't include the ability to do that. That has to be included.
MARK: Last question, Bob. We knew this was a big topic when we put this on the schedule, and just based on this conversation, it's an even bigger topic. What's the most important thing we didn't cover that you think we could end with that you want to convey to people?
BOB: Here, I'll share this. When our son Jason was going through middle school, sixth to eighth grade, we were really struggling with all just the daily living circumstances of him and his injuries and our lives and so forth. He was put into a class that was called a special ed class. And I quickly learned that was not a good environment. But that's the way schools used to run. They would create a separate-but-equal environment. And now we have learned, and schools have dismantled those. Those are not a good way to treat people. There is no real separate-but-equal when it comes to education. And just broaden out that mental model into society. Separate-but-equal, that kind of discrimination isn't healthy.
In our case, we would say thanks to our son and thanks for his disability because it's contributed so much to our family and his life story and our success overall. People can succeed and thrive, have their own goals and with the right opportunities, the right support, can be thriving members of a community. And ultimately, I think it's a credit and benefit to society.
MARK: Bob Dilaura is a senior financial planner at Schwab and he's a Chartered Special Needs Consultant. And Bob, this has just been a real eye-opening episode, so I really appreciate you taking the time to talk to us.
BOB: Yeah, thanks, Mark, was a lot of fun.
MARK: For many people, investing and financial planning are primarily about working to make sure we'll have enough money when we retire. As part of that process, we try to anticipate what expenses we'll have and plan accordingly.
One big expense is healthcare. And as much as we all hope to avoid disabling illness or injury to ourselves or our loved ones, the fact is, it happens. And while having medical and disability insurance helps a lot, Bob’s story shows that there many other ramifications.
Our interview with Bob was packed with a lot of details, and it was probably hard to take it all in while listening to the episode while driving.
Not all is lost, though. You can get a transcript of every episode on our website, Schwab.com/FinancialDecoder, in case you want to go back and refer to the information we discussed today.
Of course, there are many other big life events that may or may not happen to you that have big financial implications. A good place to start getting grounded in these events is at Schwab.com/FinancialPlanning.
You can also call us at 1-877-519-1403. That's 1-877-519-1403. And if you go to Schwab.com/ContactUs—that's all one word, Schwab.com/ContactUs—you can live-chat with an agent or find a branch near you.
To hear more from me, you can follow me on Twitter @MarkRiepe. M-A-R-K-R-I-E-P-E or check out my LinkedIn page.
Thanks for listening. If you've enjoyed the show, please leave us a rating or review on Apple Podcasts.
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For important disclosures, see the show notes and Schwab.com/FinancialDecoder.
After you listen
- To learn more about how Schwab can help with your estate-planning needs, check out Schwab.com/EstatePlanning.
- Or to learn more about financial planning in general, visit Schwab.com/Plan.
If you or someone you care for has been diagnosed with a disability, you may be faced with many challenges. While this can be an overwhelming experience, there are various financial protections and other specialized tools available to aid you in your journey.
First, we hear Bob's story. After his son experienced an accident resulting in a disability, Bob Dilaura transitioned into a passion-filled career as a financial planner. In this role, Bob helps families of individuals with special needs achieve their financial goals.
Next, Mark speaks with Bob to discuss the various trusts, accounts, and other resources offered when a disability exists.
Bob Dilaura is a senior financial planner at Schwab and is a Chartered Special Needs Consultant from the American College of Financial Services.
Follow Financial Decoder for free on Apple Podcasts or wherever you listen.
If you enjoy the show, please leave us a rating or review on Apple Podcasts.
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