Afford Anything - The Financial Reality of Developmental Disabilities, with Keith Wargo

Episode Date: April 24, 2026

#709: Keith Wargo has spent decades navigating one of the most daunting financial planning challenges a family can face: raising a child with a developmental disability. He joins us to share what families need to know. The financial stakes are significant. Keith, who is the CEO of Autism Speaks, estimates lifetime care costs for a person with a developmental disability can run between $1.4 and $2.4 million - and that figure may be conservative. Yet many families put off financial planning because the day-to-day demands of caregiving leave little room for anything else. One of the first things Keith walks us through is the federal benefits system. Medicaid and SSI are the primary lifelines for many families, but qualifying takes time - for Keith's family, it took three years of meetings and paperwork. There's also a critical detail: SSI requires the individual to have no more than $2,000 in assets in their name. A well-intentioned inheritance from a grandparent can wipe out eligibility overnight. That's why Keith recommends a special needs trust for most families. Assets held in the trust don't count against federal benefit limits. He also recommends pairing the trust with a "second to die" life insurance policy - one that pays out after both parents are gone - to help fund it. ABLE accounts round out the toolkit. Similar to a 529 plan, they allow tax-free contributions of up to $20,000 per year for a person with a qualifying disability. The funds cover everyday expenses like food, transportation, and entertainment. Unused 529 funds can also be rolled into an ABLE account, up to $20,000 per year. Keith also addresses trustee succession - who manages the money after the parents are gone, and who steps in after that person. His advice: start building a network early, revisit the plan every few years, and bring siblings into the financial conversation sooner than feels necessary. Timestamps: Note: Timestamps will vary on individual listening devices based on dynamic advertising run times. The provided timestamps are approximate and may be several minutes off due to changing ad lengths. (00:00) The Financial Reality of Developmental Disabilities (02:00) Caregiving's financial toll on families (03:41) Keith's background (04:26) His son AJ's diagnosis and journey (07:08) Rights and services end at age 22 (08:06) Medicaid, SSI, and SSDI explained (14:12) The $2,000 asset limit for SSI eligibility (14:33) Why special needs trusts matter (16:04) Life insurance as a funding tool (23:08) Planning two retirements simultaneously (25:04) ABLE accounts - the basics (27:06) ABLE account balance limits by state (36:35) Employment opportunities for neurodiverse workers (42:11) Fraud and safety risks to be aware of (51:15) Trustee succession planning (53:22) Rolling 529 funds into ABLE accounts Learn more about your ad choices. Visit podcastchoices.com/adchoices

If you are the caregiver for someone with a severe developmental disability, you're not just planning for your own retirement. You're planning for how to take care of them for life, including how they're going to be taken care of after you've passed away. And that's pretty much the ultimate financial planning challenge. So we're going to devote an episode to this. Welcome to the Afford Anything Podcast, the show that knows you can afford anything but not everything. Every choice has a tradeoff. This show covers five pillars, financial psychology, increasing your income, investing, real estate, and entrepreneurship, acronym Double I Fire. I'm your host, Paula Pant, I trained in economic reporting at Columbia.

Today's episode is different than what we normally do. Typically, our episodes are general in scope. The bulk of our episodes are designed to appeal to a mainstream mass audience. But I am breaking our usual format for just one episode, just this one, because, Because if you are caring for someone with a developmental disability, you have maybe the toughest challenge in all of financial planning. And that deserves some attention. So for those of you who this topic doesn't apply to, maybe you know somebody who is a caregiver for someone with a developmental disorder. If so, please send this episode forward this episode onto them.

Today we are interviewing Keith Wargo. He is the CEO of an organization that's called Autism Speaks. He is the father of a 27-year-old with autism. And while he, in this upcoming interview, is due to his role, speaking specifically about autism, the interview is really designed to more broadly be about financial planning for anyone with a developmental disability. So if this applies to you, I hope you get a lot out of this. And if it doesn't apply to you, I hope you enjoy the interview still. and I hope that you forward it on to anyone to whom it applies.

Here's our guest today, Keith Bargo. Hi, Keith. Hello, Paula. Thank you for having. Caregiving is such a tremendous responsibility. It often falls to the family members. Parents eventually age and need elder care of their own and then may also have a child who also needs lifelong care.

How do you even begin to approach that from a financial planning perspective? I think you're absolutely right. I mean, first of all, I'm the parent of two children. And I think being a parent in any case is a great responsibility. It's a lot of work. There's great joys to it, but it's a great responsibility, right? When you have a child that has a disability and, I think in a lifelong condition, the bar is that much higher, right? And in the beginning, it's all about, okay, let me find the right therapists, let me find the right treatment, let me find the right activities.

Is it going to be swimming? Is it going to be equestrian? I mean, we did all of this stuff with my son. That is kind of above and beyond the norm. And then at school age and figuring out the right school and working through to make sure that all those things are being set up in the way that was going to lead to hopefully the best outcome you can hope for. And that's why financial planning and thinking about all that oftentimes gets a little bit pushed aside

or doesn't get the attention that it probably needs or deserves. nerves, not from any malintent. It's just life's hard. What we try to encourage and why we have dialogues like this and appreciate the opportunity to talk about it is to get people start thinking about that earlier. My son's 27 years old, diagnosed with autism at the age of three. And if you met AJ, he struggles with social connectivity. He struggles with staying on task, but there are other things that he's highly skilled at. So the spectrum, is very broad. And we have individuals who are, we're able to hold fantastic jobs and be very successful and work through their challenges. And we have 27% of the community that is considered

to be profoundly autistic where they need 24-7 care. And when it comes to that 24-7 care and how to financially plan for that, that's something that I want to talk about in a few minutes. Sure. Before we get to that, though, I want to establish a bit more of the foundation. I don't actually even know the proper terminology to use. Would you call it a developmental disorder, a disease? What words should I be using? Developmental disorder is a good one, yeah.

Okay. And are there other similar developmental disorders that are not autism, but that also would have parents concerned about the future for their kids? Yeah, I mean, we see there's a lot of co-occurring conditions that come with autism. ADHD, oftentimes, OCD. And then there are more serious, well, not serious, more clinical issues that often come along, such as epilepsy, seizure disorders, etc. You mentioned there are 27 percent, about 27 percent of people with this diagnosis are profoundly autistic and likely will need significant help. like we will not be able to support themselves. Can you talk more, like paint a picture about what that looks like at the day-to-day level?

Sure. The term profound autism has come into being in the nomenclature over the last two or three years. And again, it's about 27% of the population. Somebody who's in our community says the, you know, it's the sugar test. Can I leave the house or leave my child or this individual for a period of time and go get a cup of sugar? The answer to that is no. that's kind of a simple definition. What does it look like?

A 24-7 care or 24-7 attention. Oftentimes, that's the responsibility of parents or caregivers. There are also some very tremendous schools and clinical settings that exist in the country, but not enough. It's a very big task for the individuals involved. And there's lots of great therapies and lots of great work that's going on to provide those individuals with a good quality of life, but I'll probably say this three or four times in our time together. Autism is lifelong. And so the planning on that, planning on all of this has to be thought of in that time frame.

The bottom line is the individuals in this country have rights to an education and rights to certain services up to the point where they're 22 years old. In many cases, that's 18, but it's really when you turn 22, when all of the sort of the education system kind of goes away. And at that point, there are services out there, but it's much more of a complicated equation. And so we encourage people to start thinking about this, all the things we're going to talk about earlier on, early when somebody's in, ideally in their early teens, so that you're not sort of scrambling once you get to that point. Now, there are government programs. Medicaid, which comes with SSI, is the most common accessed one. Medicare, which comes

with SSDI as another path to go. But those are really important for folks to get ahead of. It's a process for us, for our family. We took three years in order to get through that process. I don't even know. I mean, my wife took care of it. I don't even know how many meetings and calls and documents and everything that we're necessary to put together.

So it's a process. And you don't have to do it alone. There's a whole ecosphere that's developed of great advisors, great lawyers and folks to help on the journey. We have resources through our website and through our organization that hopefully we'll get a chance to talk more about. That can also help on that. Really, the key message is starting early because, yeah, you're right. Down the road, you're going to be all of this age and you need to be thinking about that and how to set things up as best as possible.

Okay. So part of my interest in this is I have a cousin who has a son who is nine years old. He is autistic. He is nonverbal at the age of nine. As long as my cousin and her husband are alive, he'll be fine. They'll take care of him. But the thing that makes us very nervous, the thing that makes me nervous is what's going to happen when inevitably they pass away? What should we do?

What should we know? This is a question that we get all of the time. It's a question that has kept my wife and I awake many nights for many years. at nine, you want to be focused on what's in front of you in terms of education, et cetera, and trying to get the best treatments and make the most progress. But also at the same time, starting to think, I'm starting to understand what is the path there after that age of 18. What am I going to need? And to start building out the network.

It's never too early to build out a network. In the role that I'm in, and I wasn't a nonprofit person by background, I was on Wall Street for 30 years. I came into this because of my son and I wanted to serve the community. but my wife and I probably meet with, I don't know, 15 or 20 couples a year in our community, generally, who are earlier in their journey than we are looking for advice and looking for counsel, etc. That networking of particular people who are a little farther along can be really valuable. The only thing we encourage is think early about those connections, think early about the closer

network, right, the role that you might have in down the road in his life, doesn't need to be formalized at that point, but start to think about, like, what are the pathways, what are all the alternatives here? And obviously, for everybody is going to be different, whether somebody has siblings, and that's one alternative. Everybody's going to be different, but starting thinking through those and having those discussions, they're not easy discussions sometimes. And at nine, you don't know where you're going to get to, but for adulthood.

None of us do. You know, my son now lives, he lives independently from us, was two blocks from us. You know, he has some support. He works a part-time job. And if you asked me when he was nine, whether any of those things would happen, I would have said, I hope so, but I don't know. And I kind of doubt it.

That wasn't giving a pulp, but it was, you know, just with what we saw at that point, right? It's never too early to start thinking about those eventualities. you need to focus on the present, but also think about the long term. And that's one of the things is most challenging for parents and caregivers, and this is focusing on the present, but also starting to think about that long term. You mentioned networking. How would a person go about building that network?

There's lots of ways. First of all, we as an organization, we have two and a half million followers on Facebook and through social. We're present in 20 different cities and locales. We host all sorts of events, community building events as well. We host walks and runs that are designed. Yes, they're fundraisers, but their primary purpose, frankly, is we bring the community together.

There are other organizations, particularly now that autism is as prevalent as it is, right, 20 years ago or 20 something years ago and my son was diagnosed. You know, everybody said the same thing to us. We love you. How can we help you? And tell me about autism because I don't know anything about autism. everybody said the same exact thing. That's not the case anymore.

If you go to, you know, I happen to live in New Jersey. There are some excellent local organizations there. We're very present. That's the best way to build community, building it through your school when the child's school age, looking for those activities and opportunities in the community to get involved and then getting to know with their parents, et cetera, through that. You talked earlier about SSDI. Can you tell us a bit more about that?

Sure. So there are two primary ways to access federal supports. The first is through Medicaid, which comes with SSDI. SSDI is a monthly stipend to an individual. It stands for Social Security Disability Insurance. That's correct, yes. And that is paid to the individual. There are also, you mentioned earlier, caregivers going unpaid.

There's actually some programs through Medicaid to make it even better. where caregivers can get compensated for the time rather than it being paid to an external caregiver. So Medicaid and Medicare, Medicaid is what most people pursue. It's a lifetime support both for medical, as well as for what's called home and community-based services. That's most relevant to an adult, right? Well, home and community-based services provides funding for housing, for activities, for one-off things like, I mean, we have a volunteer where Home and Community-Based Services

in Maryland paid for fencing to be put around the property because this individual wandered a lot. Those programs are really important. They're lifeline to the community. SSDI is that monthly part. Medicaid is the umbrella part of both medical as well as providing funding for services. For that Medicaid portion, do you need to be under a certain income? Yes. The test on Medicaid is you have to have an asset level of less than $2,000 in order to qualify for Medicaid and SSDI. All right. So for people with assets with a greater net worth, what are the options?

Well, this is why it's really important. As you start thinking about planning, this is where like a special needs trust comes in, right? Imagine this scenario. You've worked for three years to get your adult child on Medicaid and SSDI. As a well-intentioned grandparent leaves a gift of $50,000 in the will to that individual, goes to probate, et cetera, and comes to the individual. That is disqualified that individual for Medicaid and SSDI going forward. And like everything, there's a cure, but that there's a cure period and there's a lot of headaches, etc. So if instead that gift goes to a special needs trust, then you wouldn't disqualify for federal benefits.

So that's one of the reasons we feel strongly that for. For most people, and I'm not here to give exact financial advice to individuals, but for most people, especially in these trusts, it's an important way to go in order to have that mechanism there to have that flexibility. Right, right. If parents or caregivers who are listening to this are looking around and saying, all right, we're not wealthy, but we own a home and we have $100,000 in home equity, we have 401Ks and IRAs and we have a couple hundred thousand dollars in our 401K balance. you know, it's kind of a middle class net worth picture. What would they need to do? Does all of that need to go into a special needs trust? It seems as though $2,000 is such a small amount of money. Right.

So it's $2,000 in the individual, the disability's name. So for my son doesn't have more than $2,000 in his name. Every scenario is different, but I think the most important thing there would be to work with a financial advisor to help understand what that couple's needs are going to be in their retirement, et cetera, and then what they feel comfortable putting into a trust. That's the simple model to it. We also advise or at least consider life insurance in a special needs trust. Then these statistics are a little bit old, but the cost to support an individual with autism is estimated to be between $1.4 and $2.4 million over the course of a lifetime.

that could be dramatically higher. But for many, that's a very daunting prospect. Something like life insurance can be a good mechanism to get support. That's exactly what we did. One of the first things my wife and I did was do a second-to-die policy. So it pays out when we're both gone. I'm not looking forward to that day. But the reason that we did it, and we put it in a trust, was to support our son.

So that's one way of doing it. But I think here's where I think it's really important to get good advice. and work with somebody who understands these scenarios because they're a little bit different. This is different than like regular retirement planning. Right. And I'm sure you do a lot of sort of retirement planning things. It's a whole, you know, that in itself a massive industry, right? Right.

It's a whole different animal, right? Because you're not just planning for your own retirement. Right. You're planning for, you know, your retirement as well as providing for this individual for, in many cases, the rest of your lives. Right. And that's the part that's so daunting because I think about just retirement planning. Yeah. and how incredibly, how many variables there are.

When you're elderly, you know, you don't know if you're going to need assistance with activities of daily living. When you're 95, are you still going to be able to button a shirt to use the toilet? You might need assistance with all of those things, and that comes at a very steep cost. And even in the best case scenario, let's say you're 85 and you're fully independent, but you're not going to be cleaning the gutters. You may not even be emptying your own trash can at that stage. You might be hiring the type of household help that you have never before in your life hired.

And many people, you know, because you've never paid those expenses before, don't necessarily think to bake those into a financial plan because you just don't imagine one day I'm going to pay somebody to mop the floors or take out the trash. So I just think about ordinary retirement. retirement planning and the uncertainty around the expenses that you will face as you grow old and how challenging that can be.

And I have no idea how to layer the variables that come with taking care of somebody who might be 30 at the time that you pass away, you know, or 35 or 40. Then you're planning for the next 50 or 60 years of their life. Yeah. And that's, again, this whole ecosphere has emerged of individuals and companies. It adds a level of complexity to what is already a complex task that is daunting. That's why we suggest people start early. Use your network.

Use the information that is out there. Then again, government benefit programs, they're not perfect. Nothing is. But getting on that early is really important. Local news is in decline across Canada. And this is bad news for all of us. With less local news, noise, rumors, and misinformation fill the void. And it gets harder to separate truth from fiction.

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No one can prevent all cybercrime or identity theft. Conditions apply. With regard to the special needs trust, upon the passing of the parents, does that trust get managed by a trustee? Do the parents need a name? Because the thing that comes to mind is parents might have perhaps an attorney

that they know like and trust. But that attorney, if the parents are 85, maybe the attorney is 55. Great, that attorney might work for another 10 years. Eventually that attorney is going to retire or die. So, I mean, you're planning for the life of a child who's 30, 35. There's going to be turnover in the people who manage that trust that extends beyond your

lifetime. How do you manage for that? So it's a great question. It likely can change over time. Like any trust, yes, you would name a trustee. That trustee could be, you know, could be one of the couple. It could be a trusted attorney, as you say. It could be a family member.

It could be a sibling. And it will change over time. and our own planning, we're planning on AJ's sister becoming a trustee here in the not-so-distant future. The right way to think about it is that's the long-term, that, you know, a trust can be accessed, like any trust that you built, you can have it in the mechanisms of a start, you know, whenever you want, but most people think about that as being the long-term and the long-term assets. The other part we haven't talked to about yet is ABLE accounts.

We think that those work very well side-by-side. ABLE accounts who were created by the government, I want to say about 12 years ago, maybe 14 years ago. They're very similar to 529 accounts in that you are able to take dollars designated to a specific person. In the case of an ABLE account, the person has to be designated as having a disability. That is a hurdle, but it's generally something that if you've gone through the process of having a diagnosis, et cetera, is not an insurmountable hurdle. With the ABLE account, then $20,000 a year can be put in that account by anyone and is never taxed. The reason I think they work side by side very well is ABLE accounts have a lot of flexibility to them.

You can take money out of there for living expenses, for entertainment, for food, for transportation. And you can do it small amounts. You can take out $20. Whereas a trust is more sort of like the infrastructure for the bigger stuff, the longer term. And so side by side, they tend to work really well. And as relates to the trustee part, right, you don't need a trustee necessarily for an ABLE account. If you have a situation where you have somebody doing financial management for the individual, then that person would have the responsibility, the allocations, et cetera, there. Are there debit cards that can be tied

to ABLE accounts? Yeah. Yeah. So we now have ABLE accounts across the country. There's about $3 billion in ABLE accounts, about a quarter of a million accounts. It goes on a state-by-state basis, and so there's different limits and there's different attributes such as that debit cards available in different states, but every state has it now. The limits on it are also state-based. Here we get into a little bit of complexity, but anywhere from 300 to over $500,000, New York where we're sitting right now is over $500,000 is the upper limit. Now, a complexity to that, and this is, again, why getting advice and reading, and being prepared is so important, if that threshold of that account is over $100,000,

that can and generally does jeopardize SSI benefits. So if somebody is in that government program, then most times that cap is going to be limited to have $100,000 there. How should a parent be thinking about the challenge or the balance between going out and doing the work that is required to make the paycheck so that you can put 20,000 a year into an ABLE account, which is, you know, for many people,

it's to be able to save that much money on top of paying the mortgage, buying groceries, putting gas in the car, to be able to save that amount of money requires putting in a lot of hours on the job. But of course, the hours that you put it on the job are hours that you are not spending with your child. How should a particularly a parent who is thinking about the best long term needs of a child with special needs? How should a parent think through that? I mean, it's a great question. It's such an individual question of something. We have, one of the services that we offer is called the Autism Response Team, and it's basically in the information and referral service. We have 12 members on it. They're all highly trained.

I mean, in all areas of autism of the community, whether it's medical need or education need. Financial Matters is our third largest topic that we get inquiries. force it. This is a big threshold question. I think it's a balancing act and it is a long term. It's a marathon, not a sprint. The need in the early days to make sure you're finding the right resources through schools and therapies and other activities, etc. can be that relief valve to provide a family, to provide a couple, the ability to focus on their careers, the ability to focus on things to bring resources into the family. For my wife, and I, what it meant when we knew of AGA's diagnosis was my wife basically stopped working,

right? He said, you know what, this needs to be the focus and to do what needs to be done for AJ for the next four hour long. That means. That was the personal decision for us. And, you know, we've been very blessed. That was not a financial hardship, but it was not the plan. It wasn't a plan at all.

The plan was for both of us to have, you know, our careers for quite a while. I think that's where tapping into the resources that are there to support is so important. Where building a community of individuals and supports around you, whether that's family, friends, otherwise, so that you can do the best thing for your child, for your family. The reason it's a hard question is because it's a hard situation to manage that load. Can you talk about the siblings of special needs children? Like you have a daughter, so AJ's 27, your daughter is 23? Yep.

Let's start with when they were young. What was the experience of working with her, you know, in the context of what your family is dealing with? It's interesting. Siblings that, again, autism prevalence has grown dramatically to the last 20 years. We have a lot of siblings now who are becoming young adults and who have brothers or sisters who are autistic. We actually have a group called the emerging leaders, which is a good group of folks that are earlier in their careers, as the title would imply. Half of them are our siblings. They've been active in the community and they've been volunteering with us.

One of them is in medical school right now and planning to become a psychiatrist and work in the field. We see a lot of that. And I guess that's not really surprising, right, because it's so much a part of the way that you grow up. I don't have any real specific things about our family, right? It was just, this is how you grow up. And you love one another as a family, and you take what's thrown at you, the good times and the bad. But I do think when I look and there's a lot of initiatives going on for sibling support out there and for sibling groups coming together, it's remarkable to me, although not really that's surprising, how many people end up in those fields. One of my senior team members who runs the whole area for us, the autism response team,

she runs that team. She has an adult brother who's on the spectrum with very significant needs. Again, I don't think it's really surprising, but it's very interesting how many siblings seem to move into an area that is close to the cause. I know another individual I'm close with who he's running an investment fund, making venture capital and small investments and disability and autism-oriented companies and organizations, and his primary motivation to do that is because his adult brother, who's both in their 40s, is autistic.

Oh, venture fund. That's very cool, right? Yeah, do you know the name of the fund? I'll have to look it up. Yeah, cool. Cool. Yeah, I'd love to learn more about that one. What are some of the biggest misconceptions that people have when it comes to, well,

there's two parts to the question, but we'll start with autism in general. And then the second part, spoiler alert, the second part that I'm going to ask is about the financial piece. But let's start with autism in general. What are some of the biggest misconceptions? Yeah, I think, well, number one, I think that there's far more awareness today than there used to be. Autism is in the media, right? There's lots of individuals who are having incredible careers and incredible lives who are autistic. And so I think there's a lot more awareness than there was, you know, again, the version of the 20 couple of years ago that, that Ann and I started telling folks and our family and friends, and I'm saying, I don't know anything about this. And that's a good thing.

You know, we're proud of having a role in, but it's a society we've become more aware. I still think that there is a misconception of other people with autism, that their abilities are limited, that their prospects are limited, that just like all of us, life isn't static, right? Sometimes we feel great.

Sometimes we don't. Sometimes people start slow and finish really fast. sometimes the opposite happens, right? And so I think probably the biggest misconception would just be that, you know, limitations are not permanent and that individuals are just that. They're individuals. Like when we talk to employers about employment programs and bringing in neurodiverse and autistic people into their companies, that's one of the biggest misconceptions as well. The person's not going to be able to function in this role. They're going to be sensitive to sound.

They're going to be sensitive to lights. They're not going to be social. then I can be able to dialogue with their managers, et cetera. Those are the sorts of micro misconceptions that we overcome for the bigger misconception of going from can't to can. That's the biggest thing, I think. What are some occupations that you've seen people with autism thrive in? I mean, in the limitless, to be honest. AJ works for a company that's actually right here in New York.

It's a insurance company, like a high growth insurance company. and his work for them is, I would call it data cleanup. They're high growth, and so they're adding people very quickly. And so they're sort of like their HR records are needed to be digitized and brought up to speed and put it in a better order than it were. And then since that project, this company has found multiple other opportunities for, you know, for that sort of data migration, data cleanup work. That works for my son.

There's a company down in Florida that, has opened up a whole series of car washes or all the individuals who work there are autistic. It was called Rising Tide Car Wash. Great company. The founder wrote a book about neurodiverse employment, which is really good. You know, it depends on the individual. But I think that the, and I actually, I'm also part of minority owner of a company where we sell textiles to hotels and hospitality chains, etc. And about a third of our warehouse staff is autistic.

That was one of the goals that I brought to the company when I invested into it. And they're working at our warehouse. And most of them have started in pretty simple tasks of folding garments before they get packaged or taking them out for embroidery or whatever. But one of them, his individual started with us two, three years ago. He's now operating forklift for us. So he's moving around a couple million dollars of inventory every single day on a piece of equipment. That's an expensive piece of equipment. We can't have an accident, et cetera.

we didn't know what this individual was capable of when he started with us. We worked with him on it. And then he came to our warehouse manager one day and said, I want to do that. And so he worked with him over the course of six months and made it happen. Nice. So what jobs work for an autistic person or what jobs work for anybody is a matter of, you know, matching up those skills with desire and ability. And what I would say, we talk to companies about this all the time,

There's lots of benefits to having autistic individuals work for you. The turnover rate is exceptionally low. Once people are happy, they're and engaged. I think there's a benefit to the whole organization just from a morale perspective. There's the work that's been done by Deloitte and others about customer satisfaction with companies that hire people with disabilities and autism. There's really good benefits for the organization as well as for the individual. Nice.

I'm thinking right now about my cousin's son, who's nonverbal. this is probably an answer that I should know, but I don't. Is he likely to be nonverbal for the rest of his life? Does that happen? There are certainly folks who are nonverbal for their whole lives, but there are also many examples of folks who will find language later on. And there's a lot of good emerging technologies. There's a lot of good emerging therapies to explore.

So, you know, I think it's important to keep hope and to keep working. You know, there are some individuals who don't communicate. communicate verbally. We find other mechanisms. There's assisted devices that type to spell, type to talk, those sorts of things that are out there and new ones coming out, you know, all the time. And so impossible to know, but lots of instances. One of our emerging leaders, as I mentioned earlier, when he gets speeches, that's his job. His major job is writing books and giving speeches. He leads by saying, I didn't speak a word until, I was five years old. And here I am, you know, presenting to schools and companies and, you know,

flying all over the country, giving speeches and writing books. Yeah. Wow. How do you see AI playing a role in the future of, how do you see AI playing a role in all of this? Job development in, well, I guess this is too broad of a question. So let's start with job development because the next portion of it is in the financial realm as well. Right. In the financial planning. realm. But we'll start with job development. How do you see AI playing a role? It's a good question. I wish I had the answer. But I think that what AI can allow is for one of the things that many people with autism have challenges with is nuance, nuance of human communication, nuance of intent in a conversation, that sort of thing. I think AI can be really

helpful with that because it is very cut and dry. And it can be a tool to to help overcome some of those challenges. We're going through the same thing. Everybody's going through figuring out how AI is going to impact our organization, as well as our community. But I think from a job perspective, I think it'll open up more avenues for folks to get beyond some of the difficulties they may have in interaction.

I think that probably be the one that comes to top of my head. All right. How about in the financial planning realm? We started this by talking about a lot of the financial planning challenges their parents are going to have. How do you see AI playing a role or do you see AI playing a role in improving any of that? Well, I hope that it is another tool that folks can use to scenario play on their situations and to get information and get research. I mean, that's how my wife and I tend to use it as for figuring out how to improve our lives and

become more knowledgeable. I'm not aware of any financial planning organizations that have come up with anything yet. I'm sure it's going to come, right? I mean, the pace of change here is, you know, it was so dramatic. I am aware of some AI kind of enable products. I mentioned to you earlier, the asset limitation on SSI. That's something that's really important to not breach. So for the reasons you already talked about, I'm aware of an app that basically manages an individual's finances through moving money around to account, to enable account, for instance, right? That's a really small example that will make a big difference for financial planning. But I guess bottom line is, I don't know, but I think it's probably, you know, it probably is that sophistication and the amount of information available to help parents, to help families, to help, you know, individual like yourself who cares about this topic to get good, solid information, just makes it that much more accessible.

I am seeing AI enhancements in a lot of existing financial planning tools. So like retirement planning tools, which are the ones that I'm most familiar with, I'm seeing AI enhancements where, you know, in which AI reads and synthesizes the data a little bit better or a little bit more clearly, you know, or AI spots more patterns in your spending so that you can use it to discover patterns and how your spending tends to fluctuate in ways that might be non-obvious. Yeah. I mean, it looked, it used to be to run a Monte Carlo simulation. It took a couple minutes on a computer, right? Now you can do it. Now you can do millions of permutations instantaneously. Right.

I mean, I could also see it helping in the context of, you know, if you have an individual who is, you know, supporting someone in their financial management, you know, just did the ability for that information to flow back and forth. I had this set up with my kid, right, by my son right now, that if he, you know, has a transaction that's over a couple hundred dollars or, I don't remember what the limit is. I get a text, right? that's old, that's been around for a while.

I could see something like that being a consumer-facing product that made that more seamless. I can see products like that becoming a lot more seamless and out there right in your palm of your hand. What are some frauds, scams, what are the vulnerabilities that parents or caregivers should be aware of? Well, I mean, one thing to be aware of is just safety. Tragically, there are drownings every single year of individuals who don't know water safety and have a tendency to what's called a loping or wander. And so we do a lot of awareness training on this, and there's other organizations that help with that a lot. We do a lot of work with first responders for this and be aware of that an individual with autism

may present differently. They may, if they're not verbal, they're not going to, they're not going to respond to a question. or may respond in a way that is unexpected for the police officer, the fire, or whatever. So I think that's something that's basically just very foundational to understand. We have a ton of resources on this and something we feel a great responsibility to, not just the autism community, but the community in general to be aware of because every single one of these incidents and they happen far too frequently is obviously a massive tragedy. I don't know of specific scams or fraud that I've seen.

I think it all falls in the general category of we live in a world today where there's far more fraud and scams on every front, whether it's somebody calling impersonating a bank or somebody calling it impersonating a loved one. I mean, it's saying they're in a situation or fishing through emails, etc. You know, again, for many individuals, including my son, who were autistic, the world's very literal. It's black and white. Right. And so that nuance or even the kind of the idea that, gee, something doesn't look right here,

he'd lose that. He'd miss that. 100 out of 100 times. For us, like we've blocked his phone with any kind of solicitation type phone calls, that sort of thing. Thankfully, I don't know of any specific scams or otherwise that have targeted. autism community, but I would just say in general awareness around that and thinking through that and being in front of that for a community is really important for caregivers and parents. Right.

Yeah, I'm thinking about the parallels between this and elder care because, you know, elder care, there are so many scams targeting seniors. And that's for a variety of reasons. I mean, people, seniors tend to have higher net worths than other cohorts of the population simply by virtue of having had the time to accumulate that higher network. But, you know, you've got that, at least in the senior community, you've got that combination of higher net worth. And often there can be some mild cognitive impairment that increases that vulnerability. Look, I think there's a couple of practical things.

Again, there's a limit on how much can be taken out of my son's account. I mean, it's a limit because we keep the acid level a certain amount as well. There's an alert that comes and having little protections like that would just are. are logical things to do and try to figure out what those vulnerabilities are and go for them. It's right to have a heightened scrutiny or a heightened awareness. Right, right. And I think the challenge, my mind keeps going back to my cousin's son, I think the real challenge comes in. You know, as long as my cousin and her husband are alive, I have no worries.

You'll be fine because mom and dad are going to watch out for them and mom and dad are going to take care of them for as long as they are alive. my real worry sets in when it comes to what happens after they pass away, the second to die, the last to die, you know, because it goes back to the question that I'd asked earlier about the trustee. They might pass away and there might be a trusted person who watches after him for a while, but eventually that trusted person will die, will develop dementia. Yep. And then what? like there needs to be multiple lines of succession and almost like a game of telephone, you worry about the trust, the trustworthiness atrophying with every passing of the baton,

with every new successor until you reach a point at which, you know, will successor number three or four or five be trustworthy or even be attentive? Yeah. And so then to the setting up an alert so that. that if there's a transaction that's over a certain threshold, by the time you pass the baton to trustee number three or trustee number four, will that trustee care enough to pay attention to that notification? Right.

There's a technical part of that, right? Which is kind of the boring but important part of is it appropriate to have a power of returning? Is it appropriate to have a guardianship? Those are individual decisions, but ones that should be at least thought about before somebody becomes an adult and then implemented it at the right time. Overlay that, you know what I said a couple times, which is we're all organic individuals and we all change over time, right?

The fact that my son is more or less independent is a remarkable accomplishment for him, one that we certainly weren't sure about, you know, a few years ago. He never went to college. Many individuals of autism do go to college. So overlay that part on it. And then your last part of that, you know, how do you think three, four, stages down the road, that's exactly what I was trying to say earlier about building that network and having these communications early, right? Because it will change, right? That individual who could

serve that role at some point may not be able to serve that role. And what you want to obviously consider is the wishes of the individual who is being cared for. And those wishes can and probably will change as well as the wishes of their primary caregivers. My wife, I sit down every couple of years and go through some of the stuff and look it over. And we look at how we designed this 20 years ago. And it was laughably naive and however different it is today. And so that's how we've done it. The vulnerability and communication and having that communication today and understanding

that picture will change. It may end up being that the answer is the same as what you laid out 10 or 15 or 20 years ago. but having that frequent sit down, thinking deeply about what is this individual wants and needs and capabilities, understanding that that will evolve. And then how do we continue to make sure that we've got the scaffolding there to help? And that's exactly what all the planning is about. It's like retirement planning and then retirement planning for somebody else. Right, right.

It is. It's retirement planning for somebody else. But with a much, much longer time horizon. Right. with maybe a 60-year or 70-year time horizon. Right. And so one of the things I like to say to people is this can all feel, and frankly, you know, is in some ways very overwhelming,

but even just taking small steps early and like getting into the cadence of doing what we're just talking about, of having these dialogues, which aren't necessarily natural dialogues. For some people they are, but it might feel unnatural. But if you do it early and you start getting into a rhythm and start thinking about these steps and thinking about

an ABLE account if that's going to be in the cars to start thinking about how to fund things like that. And one of the things we didn't touch on is one of the great things about ABLE accounts as well is for our son, we weren't sure where he'd want to be at 18, 19 years older, what he was going to be capable doing what he'd want. And he probably could have gone to college, but he didn't want to. Like the day he graduated from high school, he's like, thank God I never have to sit in a classroom again.

So, okay. So we had built up a 529 plan that was there. All right, now what do we do with us? And to be honest, I didn't know what are alternatives. I mean, I knew what the alternatives were in a traditional sense of, you know, leaving it for somebody else or, you know, that sort of thing. But one of the nice things about the ABLE accounts is you actually can transfer up to $20,000 a year from a $529 plan into an ABLE account.

So even knowing that is, I think, important for folks to understand because that's kind of your traditional planning, but you're left with an optionality there that gives you a good amount of flexibility. You mentioned ABLE accounts, they differ a bit state by state? They do. Are there any particular states that are better to live in than others if a person has that kind of geographic mobility? The biggest aspect of them is the upper limits.

I'm not enough of an expert to know all of them at the top of my head. I know New Jersey and New York because I spend so much time here. Both of those have quite high limits. Beyond that, it's similar to 529 plans where some of the investment options are better, some of the expenses are, you know, are lower. I'd go to an expert on it. But it's similar like some people, including us, our 529 plans are, I don't know what state they're in, but we decided to use a particular state for specific investment reasons.

I believe, I believe individuals have the same flexibility. I believe that had the same flexibility to do it out of state, but still have the same kind of cap. Oh, okay. So you don't necessarily have to be a resident of the state in order to have an able account based in that state? I believe that's right. Yeah, similar to a 529 plan.

But talk to an expert. Yeah. Is the custodian of a brokerage, like a Vanguard Schwab Fidelity? In some states, yes. In some states, it's done by the state itself. Yeah. And like I said, the great thing about an ABLE account is, again, the 529 is a pretty good equivalency. The way to think about it, the way I mentally think about it, is quite flexible.

What you can utilize the funds for are. basic living expenses, food, transportation, entertainment, etc. So the limitations on it are quite low. It's got to be used by the individual. It's dedicated to the individual involved. But the flexibility is quite high. Limitations are quite low. We advocate for increasing the amount of folks who put into it,

and we advocate for a lot more awareness on it because it's a great tool for folks. Many of the people who are listening to this are entrepreneurs. They are employers. What should somebody who is an employer know if they want to be a positive force for good? We have an employment program called Workplace Inclusion Now or Win. We've had this for about a half a dozen years. And where we really focus is on the demand side of the equation, we go in and work with employers,

provide digital training, provide hands-on training, etc. and work willing to consultative basis to help them understand what could be the benefits of their organization, what kind of roles might work best, help put together job descriptions, help if there need to be accommodations in a workplace, help them work through that, and really do the nuts and both side by side with them to make employment happen. We do that all the time. You mentioned entrepreneurs and small business owners. What we have found is employment challenges for small and medium-sized businesses,

is often the highest, particularly ones that there aren't in New York City or on major metro areas. And we have found those are some of the most successful companies where they've been able to make this work and make it work for them and for the organization and the individuals involved. I wrote a piece for the Harvard Business Review a couple of years ago now, and we call it the missing middle. There are very successful individuals who are in Silicon Valley and in Wall Street who are, autistic and there are some portion of our community that aren't interested in working. It's not kind of part of their equation, but for that missing middle, we found that there's a really nice intersection between the desire to work and kind of small and medium-sized growing companies who are willing to put in the investment.

I say investments like with a small eye. Accommodations is often people say, oh, my God, what do I need to create in order to do? These accommodations can be as small as changing the handset. on a phone because somebody's very sensitive to sound, something like that. The investments turn out to be, number one, they pay off really well for loyalty and all the things we talked about earlier. But number two, they're not very daunting. They're not daunting at all.

Why do you think small and medium-sized businesses tend to do so well? Is it just more nimble as a business? I think so. And maybe a little bit more flexible as well. I think for many small and medium-sized and growth businesses, their cultures are, so malleable, sometimes larger companies that are very set in their ways and have a certain way of doing things. I mean, we try to work with them or those companies as well, but oftentimes I find that

those sorts of businesses are more, yeah, they're more flexible. They're more interested in trying to do things different ways. And that's what the biggest thing this is all about. So we have lots of resources on this, and we're happy to help companies we do it every single day. It's a good part of what we try to do for the community. Excellent. I want to go back to, you know, earlier I'd asked about siblings.

For parents who are listening to this who are wondering about how to prepare if you have an autistic child and then you have a sibling or siblings who will one day be the trustee or the primary caregiver, how do you prepare those children? How do you prepare those siblings for the role that they will eventually step into? It's a really good question. I can tell you individually what personally what we have done is open up the curtain earlier than when we. it might otherwise about, you know, what our situation is and what we've put into place. I think it's about communication. And I think that from some of the siblings that I've worked with and met along the way, they have felt part of the journey of their family from an earlier stage and, you know,

kind of matured earlier, I'd say, a little bit. Because I've seen some of the caregiving and some of the needs that have been there. And otherwise, you know, they might not be exposed to until later in life. So I'd say communication is probably the biggest thing, maybe opening to the extent comfortable, maybe opening up the curtain a little bit about specifics earlier on. I personally think it's really important to let children be children and let them develop into their own individuals and making them part of the discussion because ultimately you're a family. The sharing of information that might wait until your child is under 20s or something

if you do that earlier on, I think that is probably going to be benefited. to them and beneficial to the situation, beneficial to the caregivers who are trying to work through some of these situations. Right. So financial transparency. Financial transparency, yeah, here's what we've gotten a place. Here's how we're thinking about things. And then also, you know, having that feedback.

I mean, maybe the, it might be a sibling says, you know what, I'm not comfortable with this. I don't want to talk about this now. That's okay. Or they might say, you know what, I view this as my role as an adult. I understand it. And, you know, I'm there right now. And I think that the only way to do that is by, by. being open and communicative.

Well, thank you for spending this time with us. Where can people find you if they want more information? Well, first of all, I appreciate you having me. It's a really important topic, and I'm glad to have the chance to talk about it. So our website is autism speaks.org. All the resources that I've mentioned here today are available through that website. Our autism response team, if somebody needs specific advice, need specific information, specific referrals on a topic. Those individuals are highly trained. You can interact via email, talk on the

phone, however you want. Really great service. We interact with 50,000 individuals, 50,000 contacts a year on all kinds of matters. And again, like I mentioned earlier, Financial, which has been most of this conversation is the third highest one. So we're there for you. Yeah. But you said financial is the third highest one. What's the second and first? The first is receiving or just after a diagnosis. Somebody has concerns or questions about a diagnosis, how to get a diagnosis, should I be pursuing a diagnosis? And the second is sort of like right after a diagnosis is finding early stage resources. So school age resources, therapy, IEPs, which are the program setups with the school district. But financial is right there and growing. It's one of the biggest

growing areas for us as well. Right. For all the reasons we talked about. Yeah, the financial management aspects of this just seems so daunting. I mean, I think you said it very well. You're planning your own retirement and then you're planning the retirement of your child. And you're planning their retirement for 60 or 70 years. Thank you for spending this time with us. That's been a pleasure. Thanks for talking through it. Thank you, Keith. What are three key takeaways from this conversation? Key takeaway number one, you are planning two retirements, not just one. Standard retirement planning is already complicated, but families that are raising a child with a developmental disorder or a developmental disability, you're doing all of that, you're planning your own retirement, you're planning your own elder

care, and then you're also planning for somebody else's future on top of it, often across a 60 to 70 year time horizon. Because you're not just planning for your own retirement. You're planning for your retirement, as well as providing for this individual for, in many cases the rest of their lives. My wife and I sit down every couple of years and go through some of the stuff and look it over and we look at how we designed this 20 years ago. And it was laughably naive and how different it is today. That is the first key takeaway. A recognition of what we're dealing with. Key takeaway number two in terms of how to begin to deal with this,

the ABLE account is an underused tool. So an ABLE account is like a 529 plan for a person with a qualifying disability. Anyone can contribute up to $20,000 per year. The money grows tax-free, and it can be spent on everyday expenses like food, transportation. There's even a provision that's not widely known that lets families roll unused 529 funds directly into an ABLE account. One of the great things about ABLE accounts as well is for our son, we weren't sure where he'd want to be at 18, 19 years older, what he was going to be capable doing what he'd want. And he probably could have gone to college. But he didn't want to. Like the day he graduated from high school, he's like, thank God, I never have to sit in a classroom again. So we had built up a 529 plan that was there. All right,

now what do we do with this? But one of the nice things about the ABLE accounts is you actually can transfer up to $20,000 a year from a $529 plan into an ABLE account. So that is the second key takeaway. Finally, key takeaway number three, be aware of the $2,000 trap. SSI, supplemental security income, has a $2,000 limit. So an individual cannot hold more than $2,000 in assets. Now, that is different from SSDI, Social Security Disability Insurance. There's no resource or asset limit on that because SSDI is based on work history. But SSI, supplemental security income, has a $2,000 limit.

And that means a well-intentioned gift from a grandparent can render an individual ineligible. Now, the way that families protect against this is through what's called a special needs trust. Assets that are held in a special needs trust don't count against that limit. Imagine this scenario. You've worked for three years to get your adult child on Medicaid and SSDI. as a well-intentioned grandparent leaves a gift of $50,000 in the will to that individual. Goes to probate, et cetera, and comes to the individual. That is disqualified that individual for Medicaid and SSDI going forward.

And like everything, there's a cure, but that there's a cure period and there's a lot of headaches, etc. So if instead that gift goes to a special needs trust, then you wouldn't disqualify for federal benefits. Those are three key takeaways from this conversation with Keith Wargo, the CEO of Autism Speaks. Thank you for listening to this episode. I hope that you learned from it. I hope it was helpful. If you have any follow-up questions, Keith Wargo is a great resource, and Autism Speaks is a great resource. There's also excellent information available about ABLE accounts, about SSI qualification, about special needs trusts.

I hope that you have learned a lot from this episode about financial planning for people with developmental disabilities, people who will need ongoing care and support. Please forward this episode to anyone you know who might be facing these challenges. And thank you for being part of the Afford Anything community. We have a free newsletter that we send out. You can subscribe at Affordanithing.com slash newsletter. We dive into a lot of these topics. We go even deeper. Affordanithing.com slash newsletter. It is completely free. Affordanthing.com com slash newsletter. Thank you again for being part of this community. My name is Paula Pan. This is the Afford Anything podcast, and I'll meet you in the next episode.