Episode 9: How to Choose the Right Special Needs Estate Planning Team
Episode 9
Guest: Kristen Lewis
How to Choose the Right Special Needs Estate Planning Team
In this episode, host Jill Mastroianni continues her conversation with Kristen Lewis, a special needs estate planning attorney. They explore how to build the right team of professionals to support your child’s future. From trustees to life care planners, disability care managers, and legal guardians, they discuss who should be on your team and how to choose the right people for these critical roles.
Kristen also shares key mistakes to avoid—such as disinheriting a child with special needs—and explains how tools like special needs trusts and ABLE accounts fit into a well-rounded planning strategy. Whether you're just getting started or refining an existing plan, this episode will give you actionable steps to help you move forward with confidence.
What You’ll Learn in This Episode:
The key professionals to include in your special needs planning team (estate planning attorneys, trustees, life care planners, disability care managers, intimacy counselors, and more)
How to choose a trustee for a special needs trust and why professional trustees are often the best choice
Why disinheriting a child with special needs is a mistake—and what to do instead
The role of ABLE accounts in financial planning and their limitations
How to coordinate assets and beneficiary designations to ensure financial security without jeopardizing government benefits
The importance of family communication and how a well-prepared plan can ease concerns for both parents and siblings
Resources & Links:
Find a Special Needs Estate Planning Attorney: Special Needs Alliance
ABLE Account Information: ABLE National Resource Center
Kristen Lewis’ Resources: Estate Planning for Families with Special Needs; Planning Challenges for Families with Special Needs; What Can a Care Manager Do for Me?
Caregiver Important Information Sheet
Contact Kristen Lewis: klewis@harrisonllp.com
Connect with Jill:
Website: DeathReadiness.com
Email: jill@deathreadiness.com
Subscribe to receive news and updates.
Have Questions about Special Needs Estate Planning?
Special needs estate planning is complicated, and it’s normal to need to hear this information more than once! If you have questions, email me at jill@deathreadiness.com. If enough people ask, Kristen and I may do a follow-up episode to clarify key points.
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Intro: Welcome to The Death Readiness Podcast. I'm Jill Mastroianni, an attorney with more than a decade of practical experience in trusts and estates, here to demystify the complexities of planning for the inevitable. This podcast is your guide to navigating estate planning and end of life preparation with clarity, compassion, and empowerment. Let’s spark the conversation, shift perspectives, and explore how to embrace death readiness together, courageously and thoughtfully.
Jill Mastroianni: (00:33)
Welcome back to The Death Readiness Podcast. I’m your host, Jill Mastroianni.
Today, we’re continuing our conversation with Kristen Lewis, a special needs estate planning attorney based in Atlanta, Georgia. When we recorded this discussion, it quickly became clear that Kristen had too much valuable information to fit into just one episode. So, we’re bringing you this episode as part two of our conversation.
If you haven’t listened to part one yet, I highly recommend going back to that episode first. In it, we covered the basics—government benefits, special needs trusts, and some common misconceptions that can put a loved one’s financial security at risk.
In today’s episode, we’re going a step further. We’ll dive into trust administration, choosing the right trustee, assembling a team of professionals, and taking the first action steps toward planning.
We’re also tackling a big mistake families sometimes make—disinheriting a child with special needs—and discussing the right way to include your child in your estate plan. Finally, we’ll explore ABLE accounts and how they fit into a well-rounded special needs planning strategy.
(01:57) Before we dive in, I want to remind you that special needs estate planning is complex. You’re going to hear a lot of important information, and it is completely normal if it feels like a lot to take in. These are big topics, and understanding them fully can take time. If something doesn’t click right away, please be patient with yourself. It often takes hearing this information more than once for it to fully sink in.
If you have questions, email me. If I notice common themes, Kristen and I will consider doing a follow- up episode to provide further clarity. You can reach me at jill, J-I-L-L, at oversimplyllc.com—I’ll include that email address in the show notes as well.
Most importantly, remember that you don’t have to have all the answers right away. Every step you take—every bit of knowledge you gain—helps you build a stronger future for the people you love.
And, as a reminder, I do make transcripts available on my website, and I’ll include the link to those
transcripts in the show notes.
Since this episode picks up mid-conversation, I want to lay a little groundwork before we get started. The discussion begins with Kristen answering my question about how special needs trusts—both first-party and third-party—help protect an individual’s eligibility for means-tested government benefits.
(03:36) And, because a refresher is always helpful:
A first-party special needs trust is funded with the assets of the individual with special needs. It is subject to Medicaid payback, meaning that after the beneficiary passes away, any remaining funds must be used to reimburse Medicaid for the care provided.
A third-party special needs trust, on the other hand, is funded by someone other than the individual with special needs and is not subject to Medicaid payback.
With that foundation in place, let’s re-start the conversation with Kristen’s answer to how special needs trusts help protect an individual’s eligibility for means-tested government benefits.
Kristen Lewis: (04:29)
Because any assets that are held in a properly drafted special needs trust, whether it's a first-party or a third-party special needs trust, those assets are considered exempt. Any income and gains that are generated by the special needs trust, even if they are properly reported on the beneficiary's personal income tax return, those income and gains are exempt.
The other place that is a trap for the unwary is that you could have the most perfect special needs trust agreement, the most perfect funding of the special needs trust. But if the trustee does not administer the trust properly, that is also a chance for the beneficiary's eligibility for means tested benefits to be jeopardized. And that is why I am a huge fan of professional trustees for special needs trusts.
Jill:(05:36)
I do want to talk about choosing a trustee, but I just want to make a clarification. When you said that the assets in these trusts and the income generated from these assets are exempt, we're talking about, they are exempt resources or exempt income for purposes of eligibility for means tested resources like SSI. But they don't stay that way once you take them out of the trust, right?
So, you can't just take the income earned in the trust and move it over to the beneficiary's bank account or just move out. They don't stay that way when they're anywhere. It's just when they're inside the trust.
Kristen:(06:18)
That's exactly right. And you could do a whole session on how our trusts of any kind tax, but the two elements of trust property are the principle that goes into it, and then the income and gains that are generated by whatever the principle is invested in. And actually, first-party special needs trusts and third-party special needs trusts are income taxed completely differently, but we will not put your listeners to sleep by going into that this time.
Jill: (06:53)
That you know what, because they don't have to worry about it. They're going to choose a good trustee who knows about that.
Yeah, so how do we choose a good trustee? And you said that you prefer a professional trustee. And of course, the question that I talked about in a previous episode with corporate fiduciaries is maybe they don't want to be the trustee of a special needs trust. How does that all work?
Kristen:(06:59)
Well, it's funny that you mentioned that, Jill, because there are many professional trustees that will not accept a special needs trust administration because they are so difficult to administer. And it's very easy if you don't know what you're doing to disqualify the beneficiary with the disability from their means tested benefits. And so, the compliance and risk management departments of many professional trustees will not take them.
And so, in my practice, we have a handful of professional trustees who manage special needs trusts. It is a core aspect of their trust administration business. And if you're thinking about a professional trustee, you don't want your child's special needs trust to be the only one they are administering. You want somebody or an entity that is managing hundreds of special needs trusts and knows what the rules are.
They are also in a better position, professional trustees, to manage the income tax liability of first-party and third-party special needs trusts to minimize the amount that is paid to the IRS on the income and gains generated by the trust. But it may be more helpful to talk about why individual trustees are not a good idea.
Jill: (08:54)
When you’re talking about professional trustees, you're talking about corporate professional trustees?
Kristen:(09:00)
So corporate, quote unquote, just means that they are either a bank or a trust company as opposed to a professional individual trustee. And more and more individuals are hanging out their professional fiduciary services shingle. They are former trust officers or recovering lawyers or accountants who just want to manage trusts.
And there aren't that many of them out there, but there are some, and that is another option. But we tend to use the, quote unquote, corporate professional trustee. We also tend to use non-bank trust departments. We use trust companies that are not part of a bank trust department, because that's the way our families like it.
Typically, if you're dealing with a bank trust department, they will not allow a family to continue to use their independent investment advisor. The bank wants to use their own in-house investment advisors, and most of my families don't like that option. And so, we go with a trust company, many of which will allow the family's tried and true longstanding independent investment advisor to continue to manage the assets of the special needs trust.
And some of the trust companies have their own in-house portfolio managers for those families that don't have an independent investment advisor.
Jill: (10:37)
I want to jump in here to clarify something about trust management that might not be clear to someone who doesn’t work in the industry.
When it comes to fulfilling the terms of a trust agreement, there are two main pieces: managing the administration of the trust and managing the trust’s investments. Sometimes, the trustee—the person or entity responsible for overseeing the trust—is also responsible for making investment decisions.
But in other cases, the trust is set up as what is referred to as a directed trust, meaning the trustee follows the guidance of an investment advisor when it comes to managing the trust’s assets. The directed trust setup allows families to keep working with their own financial advisor for investment decisions, which, as Kristen pointed out, is very important to some families.
In this directed trust situation, the trustee focuses on handling the administrative side of the trust, like filing the trust’s tax returns, communicating with beneficiaries and distributing assets to beneficiaries, as appropriate.
Now, to echo what Kristen said, if a bank is serving as trustee, things can be a little different. Because banks typically have built-in investment management services, they often prefer—or even require—that they manage the trust’s investments themselves.
I hope that clears things up a bit! Now back to the conversation to get some helpful action items from Kristen.
Jill: (12:24)
I was thinking maybe we could talk about some action items, because I know someone who is listening might be feeling a bit overwhelmed.
So, can we maybe distill what we've talked about into some action items?
Kristen:(12:40)
Sure. I have a list here, many of the things on this list we've already talked about: Understanding the difference between government benefits that are means tested and those that are employment linked.
Jill: (12:53)
We're making this list available, correct? To the listeners.
Kristen:(12:58)
Yes. We do, have a very user-friendly article that goes over all of these points in a little bit more detail than we're going to have time for today.
Jill: (13:08)
Okay, so you don't have to write all this down. Remember, we do make the transcript available so you can print that out for yourself, but also these sort of action items, we're going to make those available as well. So just listen, just relax and you can listen.
Kristen:(13:25)
(Laughter) Okay, the second one is: Know the difference between first-party and third-party special needs trusts. Select an appropriate trustee for the network of special needs trusts that we just talked about. Consider an appropriate allocation of estate assets to fund the network of special needs trusts. We don't want to overfund the share of the child with a disability, or underfund the share of the other children.
Jill: (13:54)
I’m pausing the conversation here because, after re-listening, I realized that Kristen and I moved through these points rather quickly, and I want to take a moment to expand on them.
When determining how much to allocate for a child with special needs, it’s important to assess their long- term financial needs. This isn’t always an easy calculation, but there are professionals—like life care planners—who can help estimate future costs. Some key considerations include ongoing medical expenses, therapy, assistive devices, home modifications, and personal care needs, as well as the potential cost of caregiver support over time.
If you’re able to have open conversations with your children about how funds will be allocated, it can go a long way in preventing misunderstandings and resentment down the road. Fair does not always mean equal, and helping your children understand the reasoning behind your decisions can create a sense of clarity and peace within your family.
Moving on to the next action item with Kristen.
Kristen: (15:13)
…coordinate beneficiary designation forms for assets that are not going to be passing under a will or under a revocable trust.
Jill: (15:23)
I want to take a moment to add some context to this point as well.
You might remember that Kristen and I briefly mentioned the SECURE Act in the previous episode – stating that the act has added some complications to an already complicated world of estate planning with retirement benefits. For this reason, you might decide that it’s easier to leave your retirement accounts outright to your children who do not have special needs. You can do this by naming them as designated beneficiaries on the form provided by your retirement plan administrator.
At the same time, you may decide that other assets—such as the proceeds from the sale of your home—should be used to fund a special needs trust for your other child. You would generally make this funding direction in your Will or your revocable trust, depending on your planning structure.
Coordinating planning of your various assets can optimize tax efficiency and administrative simplicity.
Back to Kristen for the next action item.
Kristen: (16:33)
…coordinate the well-intentioned generosity of family and friends that may want to help secure the future of the beneficiary with the disability.
Jill: (16:44)
Just popping in with a quick reminder about the “Friends and Family” letter that Kristen mentioned in the previous episode.
When Kristen works with families on estate planning, she includes a follow-up letter—often called the “Dear Friends and Family” letter—that parents can choose to distribute to relatives, friends, or anyone who might want to provide financial support for their child with special needs. This letter lays out clear guidelines on how to give gifts in a way that protects the child’s eligibility for means-tested government benefits like, SSI and Medicaid.
If well-meaning grandparents, extended family, or friends aren’t aware of the rules, a simple gift could unintentionally disrupt essential benefits. This letter helps prevent that mistake by explaining the right way to provide financial support—usually through a third-party special needs trust rather than direct gifts.
Kristen: (17:48)
…assemble a team of allied professionals that are going to help design and implement the special needs estate plan.
Jill: (17:56)
Do we need to get into that a little bit more?
Kristen: (17:57)
Okay.
Jill: (17:57)
I just want to make sure that no one's kind at the edge of their seats waiting to figure that out.
Kristen: (17:58)
(Laughter) Okay. So, the team of allied professionals is different for every beneficiary with a disability, depending on the nature of the diagnosis and their support needs. And so, as part of our comprehensive special needs estate planning, we help the family determine who needs to be on their child's team.
I help them identify people who know how to do the tasks that will be ascribed to them. One of the scariest things for parents who are doing special needs estate planning is not knowing who knows what they're doing. Just like you don't want to use a corporate trustee that's only administered one special needs trust, you don't want to be relying on these allied professionals if they are relatively inexperienced in serving as a team member.
And so, as we go through the types of team members that many families need on their child's team, bear in mind that we are just identifying who needs to be able to serve this child once the parents are no longer able or willing to do so. So, you identify the team members, but you don't necessarily retain their services unless and until the parents, typically, are willing to start delegating some of the tasks that they have done all their child's life, okay?
Jill: (19:40)
Yes, I just want to highlight that, that you're thinking about these professionals, but they're not actually working as part of the team until the parents feel that they're ready to let some of the things that they take under their responsibility go to somebody else.
Kristen: (19:56)
Okay, so the first team member is typically the special needs estate planning attorney who initially serves as the quarterback of the team. (Okay.) The next one that most of our families want is somebody called a life care planner. And, you know, a scary aspect of being the parent of a child with a disability is not knowing how to answer the question, “well, how much is enough for us to set aside for our child with a disability in this network of special needs trusts.” And a life care planner is the professional who develops the life care plan that sets out in detail the answer to the ‘how much is enough’ question.
Jill: (20:44)
Where would someone find a life care planner?
Kristen: (20:48)
There are one or two sort of professional organizations that attempt to certify life care planners, but in my experience, there's some inconsistencies between the certifying organizations. But the other way to find a life care planner is to call your favorite personal injury attorney, if there is such a thing.
Jill: (21:11)
Oh, okay.
Kristen: (21:12)
Because they, personal injury attorneys, have been using life care planners in the context of medical malpractice or personal injury cases for many, many years, and only recently have life care planners been used to help families trying to secure the future of a child with a disability.
Jill: (21:34)
Okay.
Kristen: (21:35)
Another member of the team of allied professionals will be what I call a government benefits navigator, that can actually help families apply for these various government benefits. There's nothing that the government loves more than parents who try and apply for these benefits on their own. Don't even be tempted to do that. And a wonderful government benefits navigator will walk you through that process.
If the beneficiary is of school age, many times families will need a special education advocate or attorney on their child's team. You also are going to need an accountant on the team who knows how to prepare tax returns for special needs trusts. Many accountants do not know how to do this.
You also want to have an investment advisor that is sensitive to the impact of the beneficiary's disability on portfolio allocation.
You want a life insurance professional who works with families, whether it's the parents getting life insurance, insuring their lives, or whether it's the beneficiary with the disability. I mean, just because a person has a disability doesn't mean that it needs to adversely affect their insurability. If they have a spouse and children, for example, that they want to provide for, just like any other person wants to provide for their family.
Jill: (23:10)
And I would think that using life insurance as a funding mechanism, especially with younger families who might not have built up a portfolio or just don't have perhaps the means that they wish that they had to support a child if they were no longer around, that life insurance professional can talk about term life insurance policies that might be more affordable options and still give peace of mind.
Kristen: (23:39)
Well, the only downside, yes, term policies are inexpensive or less expensive than a whole life policy, for example, but their child's disability is permanent, not term. And so, one of the mistakes that families sometimes make is all they have is term. And then when it's too expensive to continue to maintain a term policy a huge chunk of the funding that they envision for their child's future care is taken off the table and they may or may not have been able to acquire additional assets to replace the term life insurance proceeds.
Jill: (24:20)
Yeah, that's a really good point. I would say, much more of a short-term solution if you need to get something in place right of way. But to your point, yes, term life insurance isn't going to be there, perhaps, as long as the needs exist.
Kristen: (24:38)
Well, probably my favorite team member, I'm leaving the best for last, is what's called a disability care manager. And most families have never heard of a care manager. They may have heard of a geriatric care manager, but there is an allied professional now called a disability care manager. And one of the articles that you're going to post is, what can a disability care manager do for me and my family? And so, we won't spend any time talking about how they can help a family, but they are indispensable for most families.
Jill: (25:17)
And I think you had talked about being able to suggest somebody who might even be willing to be on the podcast just as another way to give people a bit more information. So, that's something that we'll talk about. But if you're listening, just know that we're not trying to just give you a whole bunch of information and send you on your way. We're trying to make this a continuing conversation and continuing education.
Kristen: (25:43)
So, the one last team member I will mention that more and more of our families are asking for, especially over the last couple years, is an appropriate counselor for the beneficiary with the disability, many of whom experience all sorts of anxiety as they watch their parents get old and prepare for death or disability.
And we've also had a cry and a request for intimacy counselors for the person with the disability. Just because a person has a disability doesn't mean that they aren't interested in companionship and maybe even a sexual relationship. Many of our families really don't want to talk about sex with their child who has the disability. It's hard enough talking about sex with neurotypical kids, never mind a child with a diagnosis. And so that is a relatively new entry to the team of allied professionals for many of our families.
And then of course, ultimately the quarterback of this team of allied professionals is going to be whoever serves as legal guardian for the person with the disability. And we could do a whole episode on who should be the guardian of my child with a disability. I mean, that is something that keeps my families awake at night.
(27:15) And once we talk to them about the concept of the team of allied professionals and the guardian serving as the quarterback of the team, and not having to do the 10-page job description that the parents have been doing since their child was born, the number of people who are willing to qualify as legal guardian is vastly expanded—If you explain to them that as part of this comprehensive special needs estate planning, we have identified the people that are going to be on our child's team of allied professionals.
But like any team, the team needs a quarterback to make sure that each individual member of the team is doing their job correctly, and if not, that you fire that team member and get a new team member. And so this is a huge relief for so many families who think that they will never find somebody that will do the 10-page job description that they have been doing since their child was born, that they're doing currently, and that they'll do till they take their last breath, because it's their child and they do whatever needs to be done.
But it is not reasonable for anyone other than the parents of a child with a disability to do all 10 pages of the job description. And this will come as a huge relief to the siblings of the child with the disability who, even if they haven't articulated that they are freaking out and scared about what their role will be when the parents pass away or become disabled. You know those neurotypical siblings are wondering what is their role going to be and this will give them great peace of mind knowing that they don't have to do the 10-page job description that mom and dad have been doing lo these many years.
Jill: (29:18)
I’m pausing the conversation here to talk about something really important—the “10-page job Description” that Kristen mentioned.
If you have a child with special needs, it might feel overwhelming to think about all the knowledge you carry in your head about their care—the routines, medical needs, preferences, and everything else that makes their life run smoothly. In fact, it might seem easier to just keep managing everything yourself rather than trying to explain it all to someone else.
But here’s the reality: at some point, someone else will need to step in—whether for a short time while you’re away, or in the long term. And when that happens, having a clear plan in place will be critical.
So let’s take this one step at a time. You don’t have to write out all 10 pages at once, but let’s commit to starting. Getting even a few details down on paper is a step toward making sure your child is cared for in the way you want, no matter what happens.
To help, I’ve put together a form you can use to begin this process. You can find it in the show notes or on the resources page of my website.
With that, let’s get back to the conversation.
Jill: (30:47)
I did want to go back to talking about the counselor, and especially the intimacy counselor, because I do agree that those are really difficult conversations for parents to have with any kid. And when I was young, there was this show on TV. It was called Life Goes On. Have you ever heard of that, Kristen?
Kristen: (31:11)
I have heard of it, but I can't say that I've seen any episodes of it.
Jill: (31:16)
So we watched it religiously. I think it was on from 1989 to 93. So, I would have been about eight when it started. And we would watch it as a family. And Corky, who is the individual who has Down syndrome, and he's the main character in the show, he does have a girlfriend. I know he goes on dates, and I can't recall if he got married, but I do remember an episode where his girlfriend was menstruating. And they talked about this openly in the episode.
And my brother asked us later what that meant. My mom said, “go talk to your father.” And so, he went .and talked to my dad. And he came back. And we said, “what did he say?” And he said, “he said it has something to do with the armpits.” And my mom said, “go back and tell him that's not right (laughter). Tell him you want to know what it is.”
Kristen: (32:23)
That is so funny.
Jill: (32:24)
You know, as a kid, I like remember thinking that that was so funny. But just like an example, yeah, it's hard to talk about. No, menstruation has nothing to do with your armpits. But that was what my dad felt was the appropriate answer at the time.
Kristen: (32:40)
Well, now that we're talking about the intimacy counselor, another thing, in addition to just explaining the basics about ‘how are babies made’ and so forth, we've had a number of families whose child with a disability spoke with the intimacy counselor about very disconcerting suggestions that they saw on the internet about sadomasochistic behavior.
This one individual was actually on his way to an S & M engagement from somebody that he met on the internet when he had this counseling session. The counselor basically said, “I'm pretty sure you don't want to keep that appointment. Let's talk about what S & M is.” And she explained to him in a disability-appropriate way what he thought he was getting into is completely different than what it really would have been.
And so that protected him. That session with the intimacy counselor protected him from God knows what kind of torture. And so, a lot of our individuals with disabilities, they have free access to the internet and not everything is good on the internet when it comes to this particular issue, this intimacy issue.
Jill: (34:11)
I always say, you have to educate yourself. Knowledge is power in this world. And gosh, we don't want to be a parent who didn't have a conversation, and you can't undo what happens. You know, talking about death can be uncomfortable. Talking about sex can be uncomfortable. But we have to get comfortable with the uncomfortable because this is all a part of life. And we need to make sure that the people in our lives have adequate information to make informed choices.
So, I know I interrupted you when we were going through the 10 points, and that was, I interrupted you at putting together a team of professionals. Did we miss anything that you want to go back and add? And even if we did, like I said, we're going to be posting that information for people to look at in the show notes and also on my website.
Kristen: (35:01)
Well, let's talk about a very important one that you referenced: Do not disinherit the person with the disability. The sad thing is legitimate estate planning attorneys still give this very bad advice to families that have a child or an heir or beneficiary with a disability.
And generally, they give the advice to disinherit the beneficiary with a disability because they don't know how to do special needs estate planning. They don't want to learn how to do special needs estate planning and they are unwilling to co-counsel with someone who knows how to do special needs estate planning.
And so, these traditional estate planning attorneys suggest that the share of the child or beneficiary with the disability should be informally managed by a sibling or another family member or friend who will do the right thing, quote unquote, by the person with the disability. And this informal approach almost never works out the way the parents of the beneficiary with the disability intend.
Most of the reasons it doesn't work out has to do with creditor problems that the family member or friend get into. And so, let's just assume that the family member wants to do a good job, and they segregate the assets that are set aside for the person with the disability in a separate account that's in their name. But then that individual gets into a messy divorce. And as part of the divorce settlement, the funds set aside for the person with the disability end up in the ex-spouse's pocket. Or the family member doesn't pay his income taxes. And there's an IRS tax lien placed on all of the assets, including the account with the funds set aside for the person with the disability.
Jill: (37:12)
Or what if the person dies? The person that you're trusting dies?
Kristen: (37:15)
Yep, dies without a Will. You know, 70% of people die without a Will. And so, the intestate heirs receive the assets in the account that was set aside for the person with the disability.
Jill: (37:30)
That's a lot to put on somebody to do planning and create a special needs trust when you weren't willing to do it in the first place.
Kristen: (37:38)
Exactly. If your listeners ever get that advice from an attorney, you know that you need to be looking for another attorney. And in fact, there are some cases out there, it is grounds for legal malpractice. If an attorney suggests disinheriting the person with the disability and using one of these sort of informal approaches.
Jill: (38:01)
Oh wow… Okay.
Kristen: (38:03)
So one more I have. The last one is: consider estate planning for the person with the disability. Just because a person has a diagnosis or a disability doesn't mean that it prevents them from doing their own Will and their own disability documents, financial powers of attorney, and healthcare directives. Sometimes families, they're so busy putting together the special needs estate plan that supports their child with a disability that they forget that that individual can still have capacity to do a Will or a trust or their disability documents.
Jill: (38:46)
Right. I think people might not understand that the capacity for creating a Will, you know, it's relatively simple. You know, you understand what you own. You know who the natural objects of your bounty are, your family, know who they are, and you know who you want to give things to.
Kristen: (39:05)
Pretty simple.
Jill: (39:06)
Yeah, that's pretty simple. Okay, Kristen, do you still have time to talk about the ABLE account?
Kristen: (39:12)
Of course.
Jill: (39:15)
Okay, awesome. Because the ABLE account, I think, is a tool that a lot of families are trying to use. And I think it can be a little bit confusing. So, can you tell us first what an ABLE account is? And here we have another acronym, maybe you could tell us what that stands for, too.
Kristen: (39:30)
(Chuckling) Yes, yes we do. So ABLE stands for Achieving a Better Life Experience. All of these acronyms are so tortured, but an ABLE account is modeled on a traditional 529 college savings plan, which many of your listeners are familiar with. And an ABLE account is basically a savings mechanism for people with disabilities whose onset date preceded their 26th birthday. So, at least under current law for the rest of this year, 2025, if the disability onset date was after the 26th birthday, then you can't open an ABLE account.
However, effective on January 1st of 2026, this age limitation increases to 46.
Jill: (40:26)
Oh. Wow, that's a significant change.
Kristen: (40:28)
That is a significant change. And so many more millions of people will be eligible to set up an ABLE account after January 1st of 2026. And this too is an exempt asset for purposes of establishing and maintaining eligibility for means tested government benefits.
The person opening the ABLE account has to establish that they meet the government's definition of disability. Which means if they're getting SSI or SSDI, they've already met that requirement that, you know the government agrees that they meet the definition.
Jill: (41:08)
Okay, so if you showed that you're receiving either of those, then you would have a qualified disability for the ABLE account.
Kristen: (41:15)
Exactly. And if you don't happen to be eligible for either of those, there is a certification process in lieu of currently qualifying for SSI and SSDI. So, an ABLE account is a wonderful new tool for special needs planning, but it is not a substitute for the network of special needs trusts that we talked about.
But in some regards, it is better than a special needs trust because, for example, the person with the disability is allowed to manage the funds in the ABLE account if he has capacity to do so. Or they can designate a third-party to manage it.
The person with the disability actually can be involved in the investments that the ABLE account, so you know there are, every state ABLE program allows investing the assets of the account in equities or fixed income. And so the beneficiary with the disability can be a part of that process. And you can save up to $100,000 in an ABLE account and not adversely affect your monthly SSI payment. Once it goes over 100,000, your SSI payments are suspended. Once it goes back under 100, your SSI payments can start up again.
Jill: (42:50)
Now can a grandparent make a gift to an ABLE account?
Kristen: (42:55)
Yes, they can. And so, we talked about in the context of annual exclusion gifts that every donor can give $19,000 a year to a person without having to pay any gift tax. With an ABLE account, you'll hear that $19,000 a year number again, but it basically involves gifts from all sources cannot exceed 19,000 annually.
Jill: (43:26)
Annually?
Kristen: (43:27)
Annually. And so if grandma makes a $19,000 gift to the ABLE account, nobody else can contribute to the ABLE account that year. And so that is not as favorable as contributing to a third-party special needs trust because of course there is no limit on what you can fund a third-party special needs trust with.
Jill: (43:50)
And do we have the Medicaid payback with the ABLE account?
Kristen: (43:55)
I'm so glad you asked about that. And that is a very state specific answer. So, in Georgia, for example, our ABLE program, which is actually part of a consolidation of many states, it's called the STABLE, S-T-A-B-L-E. I do not know what the ST stands for, but in Georgia and most other states that offer ABLE accounts, even third-party money is subject to a Medicaid payback. Which as we talked about, if you're dealing with a third-party special needs trust, there is no Medicaid payback.
And so, one of the resources that you're going to be listing is something called the ABLE National Resource Center. When you go on their website, it will give you all the differences between all the different state ABLE plans, including whether they have a Medicaid payback or not.
Jill: (44:59)
Okay, that's very helpful. Aside from the limitation on the contributions from third parties, is there a limitation on how much the beneficiary of the ABLE account can contribute?
Kristen: (45:12)
So, the beneficiary can contribute up to $19,000, but that is part of this all-inclusive, so, if the beneficiary puts $19,000 from a checking account in their ABLE account, nobody else, no third-party can add to it. However, the beneficiary, if the beneficiary is working, then the beneficiary can contribute whatever the federal poverty level is. It is a specific dollar amount, and so they can contribute from their earnings up to whatever the poverty level is applicable for that particular year. Nobody else can contribute based on that exception.
Jill: (45:57)
After my conversation, with Kristen I looked up the federal poverty level. For the year 2025, in the 48 contiguous states and the district of Columbia, for a household of 1 person, the federal poverty level is $15,650, annually.
So, if the beneficiary is working, and they or their employer are not making certain retirement plan contributions, the beneficiary may contribute an additional amount equal to the lesser of their annual compensation and the individual federal poverty level for a one-person household in their state of residence.
Back to my conversation with Kristen.
Jill: (46:49)
So generally, if the beneficiary is not working, the total amount of contributions from a third-party or from the beneficiary to the ABLE account is limited to $19,000 annually.
Kristen: (47:03)
Correct. It's a very slow way of saving money for the person with the disability, if you can only contribute $19,000 a year. And so that's why it is not a substitute for a special needs trust where you can fund however many millions of dollars of life insurance proceeds or other assets without violating any accumulation rule.
Jill: (47:28)
Right, because the cap is $100,000, correct?
Kristen: (47:33)
Well, I don't have any clients who have exceeded $100,000. You can continue to add to an ABLE account even over $100,000. And the true, true lifetime maximum that you can put in an ABLE account is keyed to the state's 529 plan limit. And when you go to the ABLE National Resource Center, it will tell you what the lifetime limit is for a particular state's ABLE program.
So, in Ohio and some more enlightened states, the maximum is over half a million dollars because that's what the limit for 529 plans is. So again, there are vast differences between the states.
Jill: (48:23)
After my conversation with Kristen, I checked out the ABLE National Resource Center website.
The Social Security Administration disregards the first $100,000 in an ABLE Account. Only assets above $100,000 count as a resource for purposes of determining SSI eligibility.
If an ABLE account balance exceeds $100,000 by an amount that causes you to exceed the SSI resource limit of $2,000 for an individual -- whether alone or in combination with countable resources owned by the individual outside of the ABLE account, the Social Security Administration suspends the SSI payment until the countable resources are below the allowable limit.
But, pay close attention here because you need to be very careful not to lose eligibility for Medicaid.
A beneficiary’s Medicaid continues when an SSI recipient’s ABLE account exceeds $100,000 by an amount that causes the recipient to exceed the SSI resource limit--whether alone or with other resources.
The recipient retains eligibility for Medicaid as long as the recipient remains otherwise eligible.
So, if non-ABLE resources over $100,000 cause an individual to exceed the resource limit, Medicaid is
suspended.
You need to be very careful that the resources outside of the ABLE account do not exceed the resource limit. It might seem like a technicality, but technicalities matter in the world of means-tested eligibility for government benefits.
And, as Kristen mentioned, the ABLE Account limit for your particular state is available on the website for the ABLE National Resource Center. I will include a link in the show notes.
Now back to our conversation.
Jill: (50:40)
I think we've covered a lot, Kristin.
Kristen: (50:44)
Yes, we have.
Jill: (50:45)
I appreciate you spending time with us. I wanted to reiterate that we are going to be putting a few resources in the show notes and also on my website, so anyone can get those there. I also wanted to mention that we'll put a few links that might be helpful, including to the special needs alliance, which is: specialneedsalliance.org.
As well as, I want to put a link to where people can find you. Can you just tell us how people can reach out to you? And then I'll also include that information online and in the show notes.
Kristen: (51:27)
Of course. So, I am in the Atlanta office of Harrison LLP. So, if you go to www.harrisonllp.com, you will find me, you will find some of the articles and other things that are posted. You can also send me an email at klewis, L-E-W-I-S at Harrison LLP.com
And I always, always offer to be an ongoing resource for people who have heard one of my presentations. And I hope your listeners will take that to heart. And the Special Needs Alliance website will help them find a special needs estate planning attorney in their state. But I am very pleased to chat with them about anything that they were a little confused about in our time together.
And based on my 40 years of giving speeches to families that have children or other loved ones with disabilities, I have determined that families need to hear the same exact information at least three times before it starts to make sense to them, before they're ready to actually take the steps and move forward with special needs planning.
And so, if any of your listeners are feeling like a fire hose of information has just engulfed them, they are in good company and they can listen again. And that'll be the second time they hear the information. And then the third time they listen, it will start to make sense. But for any lingering questions, I'm happy for them to send me an email so we can go over those.
Jill: (53:14)
I also wanted to clarify, so you are licensed in the state of Georgia only, is that correct?
Kristen: (53:21)
I also have maintained my license in the state of New York, but it will be a cold day in hell before I ever practice in New York again (chuckling). So primarily, yes, Georgia, but we serve as co-counsel with lawyers all over the country.
Jill: (53:38)
And that's how you and I met. I was the co-counsel in Tennessee making sure that the work that you were drafting was complying with Tennessee law. So, it was a good experience, obviously, or I wouldn't have asked you to come on the podcast. But I think that it is really difficult to find qualified professionals. And if someone is thinking, oh my gosh, Kristen’s in Georgia, and I'm not, there are lots of attorneys in the states where other people live. And you had mentioned that often you will co-counsel with someone who is a member of ACTEC. What does that stand for?
Kristen: (54:19)
Yet another acronym and it stands for the American College of Trusts and Estates Council. And there are a fair number of ACTEC members who are also special needs alliance members. And if an ACTEC member is not a special needs alliance member, then many times I can co-counsel with the ACTEC member and still get the job done for the family.
Jill: (54:45)
I think the main thing that you're looking for in an attorney who might be in your state, if you don't live in Georgia, is someone who is open to admitting that they don't know what they don't know (chuckling). [Exactly]. It's not possible to do everything. And so, an attorney who is capable of working with someone who specializes in a different area of estate planning, special needs estate planning, just being open to that experience is probably the most important part.
Kristin, if someone was listening today and this was their first time hearing this information and you said that you need to hear it three times before anything is going to sink in, what would your recommendation be to that person, who maybe is feeling a bit overwhelmed, like you said, having drunk from the fire hose?
Kristen: (55:36)
(Chuckling) Well, I would say, “just do it, just start doing it, make steps and take steps to get this done rather than just stressing out about it.” As I mentioned before, don't wait to see if your child grows out of whatever the current challenge is. And don't use do-it-yourself Will and trust software. You would be better dying intestate than with some of those do-it-yourself things that I've seen.
Don't believe everything you read on the internet about special needs estate planning, and seek referrals and connections from disability specific nonprofits in your community. You know, the local autism chapter or Down syndrome chapter. Don't put too much responsibility for your child with a disability on the shoulders of your neurotypical children or other family members.
And now that you know about the team of allied professionals, you can help avoid making that rookie mistake of putting too much responsibility on the shoulders of your other children or family members.
Jill: (56:53)
Thank you, Kristin, for giving us so much valuable information. It has been a pleasure, and it has been so informative. So, thank you very much.
Kristen: (57:03)
Thank you so much for inviting me. I love, love, love talking about special needs estate planning and how to make it easier for the families we serve to implement the correct planning. So, thanks for that opportunity.
Jill: (57:18)
As we wrap up today’s conversation, I want to take a moment to acknowledge just how much we covered in this episode.
If today’s discussion felt overwhelming, that’s okay. Special needs estate planning is not something you
need to master overnight.
The key is to start somewhere—whether that’s gathering more information, reaching out to a professional,
or simply having conversations with your family.
And remember, you’re not alone in this process. If you have questions, please send them my way to jill@oversimplyllc.com If enough people have questions, Kristen and I will consider doing a follow-up episode to clarify key points.
I’ll also include links in the show notes to helpful resources, including the transcript of this episode, information on ABLE accounts, and resources provided by Kristen.
Most importantly, give yourself credit for taking the time to educate yourself. Every step you take brings
you closer to a plan that will give both you and your family peace of mind.
Thank you for joining me today and thank you again to the amazing Kristen Lewis for sharing her time
and her knowledge.
Disclaimer: Before we wrap up, I want to remind you that while Kristen and I are attorneys, we are not your attorneys. The Death Readiness Podcast is for educational purposes only and is not legal advice. Use of this information without careful analysis and review by your attorney, CPA, and/or financial advisor may cause serious adverse consequences. We provide no warranty or representation concerning the appropriateness or legal sufficiency of this information as to any individual’s estate or related planning. For legal guidance tailored to your unique situation, consult with a licensed attorney in your state.
To learn more about the services I offer, you can visit Oversimplyllc.com.
April: (59:36)
Hi, I'm April, Jill's daughter. Thanks for listening to The Death Readiness Podcast. My mom always says that death readiness isn't just about planning. It's about the people you leave behind and the legacy you create for them. We hope today's episode helps you think about how to take care of yourself and your loved ones, now and in the future. If you liked what you heard today, share this episode with someone you care about. Follow our show for free on Apple Podcasts, Spotify, YouTube, or wherever you're listening right now.
