Autism at 18: Do You Really Need Guardianship? with Melissa Donovan

What actually happens when your autistic child turns 18?

For many families, this transition brings overwhelming questions about guardianship, SSI, financial planning and long-term independence. But what most parents don’t realize is that guardianship is not always required and in some cases, it may not be the best option.

In Part 2 of this conversation, Mike Carr speaks with special needs planning attorney Melissa Donovan to break down the real decisions families face as their child approaches adulthood.

Melissa explains how SSI eligibility works, why guardianship and benefits are not directly tied together, and what alternatives families should consider before making permanent legal decisions. She also shares why it’s never too early to begin financial and estate planning and how most plans can evolve over time as your child’s needs change.

This episode is especially valuable for parents of children with moderate to profound autism who are beginning to think about long-term care, independence and financial security.

Key topics include guardianship vs supported decision-making, special needs trusts, SSI eligibility, Medicaid considerations and how changing laws may impact future planning.

If you’re feeling overwhelmed by the transition to adulthood, this conversation will give you clarity, direction, and practical next steps.

Transcript

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Mike Carr (00:05):

Well, welcome back everyone. This is part two of our conversation with Melissa Donovan, who's an expert when it comes to special needs trust, guardianships, ABLE accounts, SSI, SSDI, waivers and all kinds of other good stuff. So we're going to continue with Melissa right now from last week. If you didn't see it, you might want to go back and check out that episode where we talk about everything from guardianship to financial planning and all other kinds of good things today. So let's continue on. And it doesn't make any difference whether that person is, your parents have guardianship of you or not, right? Because a guardianship basically says your son or daughter can't make those decisions for themselves, but from an SSI standpoint, makes no difference. When they turn 18, they can get it if you go through the application process and you're accepted, regardless of whether they have the ability to make decisions on their own or not.

Melissa Donovan (00:54):

You can apply for SSI before you do guardianship. Now, it just kind of depends on the circumstances. There are certainly circumstances where guardianship is not necessary,

(01:04):

But Social Security is a valid application to put in because there are, like I said earlier, there are alternatives to guardianship that most courts are going to want you to try first. So we might have a situation where, and I will say, particularly dealing with autism, it's probably the most common place that we see it, is we don't really need a guardianship, but we have an 18 year old who is not able to fully function independently and they still need a little help. So maybe we're talking about a situation where we have a family and we have supported decision making agreements, maybe some powers of attorney, and we're kind of trying to go that route. That doesn't mean that that child wouldn't qualify medically for social security benefits. They're not necessarily intertwined completely with one another. Now, certainly if somebody has guardianship, it is a very strong indicator that we're going to meet the test for social security as well, but you don't need to have that to prove to social security that you are qualified for social security.

Mike Carr (02:07):

So just in general, when you think about advice and guidance that you would give parents whose son or daughter has a lot of the challenges that we've been talking about, but they're still in grade school, right? Or maybe middle school. So they haven't really started worrying a whole lot yet. They're still on this path of, well, can we mainstream them, but things aren't going quite as well as we hoped, or maybe there's been some regression and now they can't even do things that they could do six months earlier. When would you suggest someone start seriously looking at financial planning with or without a trust? Is it too early to start? I mean, is there a time that it doesn't really make sense to start before your child's this age? And do you absolutely want to start by the time your child's this other age? I mean, what are your thoughts there?

Melissa Donovan (02:51):

When it comes to financial planning, I'll kind of think of that as two things, actual financial planning and more like estate planning. It's never too early in my opinion to do either. Now that being said, I'm not a financial planner. So I mean, there are really great financial advisors who actually do have specialties in special needs planning. I always think it's a good idea if you are someone that has the forethought to be able to do that, to try to have a conversation with an advisor who does kind of focus. There's additional pieces to that puzzle that a financial advisor who might not actually have that accreditation, that certification, not that they can't talk about it, but if you have a financial advisor who does that, that's a great tool to start looking at. And again, with the estate planning side of things, kind of looking at, do I need a special needs trust or can I do something different?

(03:36):

It's never too early. I oftentimes find myself having conversations with people the way I like to kind of put it, as kind of simplistic as it might sound, is if let's say we have a child who is nine, 10, six, it doesn't really matter how old. I would say if they're younger than 13, most estate planning is changeable. So I always kind of go into that conversation going, okay, we can look at this as glass half full, glass half empty, and then we can change it. In some people, if you're more in the kind of mindset, generally speaking, that you're the type of person that I'm always extra worried about things and I want to have everything buttoned up and I want to be extra, extra careful. Okay, that's fine. We'll start on maybe we need to do a full fledged special needs trust and be as restrictive as possible knowing that, okay, your child's seven now, but maybe by the time he's 13 or 14 years old or 15 years old, things have improved a lot.

(04:27):

Okay, we just go back and change it and we can do it the other way too.Because most planning at that stage is not going to be irreversible. It's not very common, at least in my practice, that we are doing completely irrevocable special needs planning. Not in every situation, but most people are looking at doing special needs trust, either what we call as a testamentary special needs trust. So we're doing it through your own will or your own living trust. Those are changeable. So if we have a real restrictive trust in stage one and then five, 10 years goes by and we realize we don't necessarily need to be that restrictive, then we make it less restrictive. But if we go the opposite, we can do the other way too. So it kind of goes either way. It's just good to plan. We tend to, as human beings, procrastinate the things that are the hardest to talk about.

(05:10):

I don't know if you've ever read or seen that book, Eat Tha Frog. I know it's not like a fun thing to visually think about, but it's true. We always want to put off the thing that seems the hardest, and these are hard conversations to have. Most people don't want to talk about death and dying and being incapacitated anyway. And then let alone, if you have a child with severe special needs, you are so busy taking care of that child. I don't know personally, but I know from working with families for a long time, you kind of get a little overwhelmed and that's where your focus goes. So you're busy enough, we don't want to think about it. So it's good to think upfront and start that conversation. So

Mike Carr (05:43):

I don't want to give parents false hope. And certainly someone that's got a severely autistic or profoundly autistic child, there's a lot of literature and studies. There's no cure for autism. There's not even a consensus on what causes autism. There's even some disagreement on what is the definition of profoundly autistic or severely autistic or level three autistic. Having said that, there has been some recent advancements in genetics where if you can identify certain genes that are switched a particular way, there's some cutting edge research that now you can go in and you can switch them back. And at least in mice, which aren't people, right? But at least in mice, then the neurons in the brains actually can be affected by that and reform and correct what looks like autistic behavior. So my question is to you twofold. Number one, have you seen any parents that have set up a special needs trust for someone that's profoundly or severely autistic and quote a miracle happened and they don't need it anymore?

(06:41):

Or have you seen situations perhaps where outside of autism, but with other kinds of complex special needs, if there's the possibility of a cure, right? Let's say they're not autistic, they have some other medical condition, you would set up the special needs trust differently with that eye towards maybe at some point in the future that money won't be needed the way we set it aside or a legal guardianship won't be required anymore. How likely or how many times have you ever seen all this hard work being reversed for the right reasons?

Melissa Donovan (07:13):

We've seen it with a few of our estate planning clients where maybe not, as you kind of said, maybe not for severe or profound autism, but with other medical situations where we have had. When I'm talking to clients, I referred as a full-fledged special needs trust. If you're looking up special needs trust on Google or AI or ChatGPT or whatnot, what you're going to see. Where we've been able to kind of pull those restrictions back, I've seen it happen with some of our clients more so in, we've had some traumatic brain injury cases. I have seen some cases in regards to autism, but I don't know that I would've necessarily categorized those initially as profound upfront. It's not often that we run into a situation that someone has done that more full-fledged, more restrictive planning, and then we can reverse it later on. But I've been with the firm, I've been doing this for 11 years now, and I have seen it on, I will say, at least a handful of occasions.

(08:08):

Okay.

Mike Carr (08:09):

So let's talk about, I want you to put on your crystal ball, your Oracle hat now. There's always consternation and concern about laws changing and rules changing. And I think the period we're going through now with what's going on in DC is unprecedented, at least in my almost 70 years of being alive and paying attention to this stuff for the last 30 years anyway. Are there any things on the horizon? And I'm not asking for, yeah, this is going to happen. It's just, you should be aware of the possibility of this rule changing or this law changing, which might affect what we set up for you in a special needs trust, how able counts might work, your access to waiver dollars. There's not going to be anywhere near as many waiver dollars available. I mean, do you have any insight or understanding or just a comment or two that you'd like to make knowing it's impossible to predict the future?

(08:55):

But I would at least be concerned or aware of or pay attention to this thing or that thing. I'm

Melissa Donovan (09:00):

Going to keep this pretty general. It is a good idea whether you are the type of person that you're going to be doing all of the research and reading and you keep your news app constantly open on your phone, or you're the type of person who's going to go to your professionals and say, "Hey, do I need to be worried about anything here?" You are going to probably continue to see changes in the way that these programs, and I will say with CMS, so with social security, with Medicaid, not in that realm, but somewhat with Medicare, you're going to see a constant stream of, "We're going to do this, we're going to do that, we're going to do this, we're going to do that." And what we're seeing right now, some states are going to be affected more than others. And a lot of that has to do with whether the state has Medicaid expansion or not.

(09:43):

Again, I know that we have viewers from all over. So you might see some changes in Texas, you might see some changes. I'm from Massachusetts originally. So when states have Medicaid expansion and those waiver dollars are coming down in the federal government, the rules, you're going to see that more affected, truthfully, because they have more wiggle room there to begin with.

Mike Carr (10:06):

What is that? I don't know what Medicaid expansion is. Can you just tell

Melissa Donovan (10:09):

Me what that is? So with Medicaid expansion, it means that that state is, they have agreed and they are doing more things to get more money funneled into their Medicaid program to begin with. So they have more waiver programs available and more people are on those waiver programs versus in states that do not have that expansion in place. So they have fewer of those waiver programs in place. So as you can kind of imagine, if I'm in a state that has more of those waiver programs and the federal government's rules for obtaining those waiver programs is now tightening, those states are going to be affected more than states that said, "Well, we don't have that expansion in the first

Mike Carr (10:45):

Place." Are there any states in particular that come to mind that are known for being the states that have the most Medicaid expansion, therefore they're the ones that might be the most affected or is that hard to say?

Melissa Donovan (10:56):

It's hard to say for me off the top of my head for you.

Mike Carr (10:58):

Okay. Well, we've covered a lot of great stuff. And I think all the answers you've given have been, for me at least, very helpful. Is there anything else though that we haven't talked about that you'd want to be sure and mention as part of this overall challenge that parents of special needs kiddos are facing?

Melissa Donovan (11:13):

I think that the most important thing that parents can do, sometimes it might sound a little kitschy, but to reach out to your community I think is really important. Being in the Austin area, we have a lot of really good community groups here. And I find that a lot of our clients, a lot of people that I speak to, whether here through work or just in general, there's a lot of really good connection points in terms of community groups that you can go into focus and things like that. You're getting all of your information from, like you mentioned earlier, ChatGPT or anything like that, you want to be careful. It never hurts to kind of take stuff in, but it's important to have conversations with people that can guide you. So whether that means calling and having a consultation with an attorney, speaking to your counselors at school, things like that.

(11:59):

If you are in a situation where maybe the idea, financially speaking, of speaking to an attorney is a little bit outside of your comfort zone. There's a lot of nonprofit organizations that you can reach out to, to start where they can give you some guidance. It's just important to kind of put some thoughts in place and think about, okay, what do I need to consider? And start thinking about that maybe at least by the time your kids are 10 or 11 years old in terms of what does this look like over the next eight, 10 years or so. The other thing I will say is more and more, and I think this is part of the kind of double-edged sword with people being better informed about things like guardianship. I find a lot of people think they need guardianship when they don't. You can have those conversations.

(12:45):

And if you're going to go talk to an attorney, if you're going to go talk to a professional, find someone who really knows the special needs arena and can kind of walk you through those conversations. He's going to ask you a lot of questions about your child. They're not just going to say, okay, what are you worth? And things like that. You need to dig into, okay, what is your child doing on a daily basis? What does his life look like? What are the things he can do? What are the things he can't do? And kind of have that conversation more like a counseling session. I always tell people there's a reason in Texas our licenses say attorney and counselor at law. And some areas of law, you feel a little bit more like a therapist than you feel like a lawyer. And elder law and special needs is kind of one of those things, which is part of why I love what I do.

(13:24):

You need to be able to feel comfortable with the person that you're working with. It doesn't matter who that person is. And you feel like you can have a conversation because doing good special needs planning, most of it is about really getting to know what the family structure looks like, what the day-to-day life looks like, and planning appropriately for that individual. It's not like a cut and paste, I'm just going to put this person's name on this thing and everybody's going to look the same kind of a Plan.

Mike Carr (13:46):

That tailoring, that customization, that talking to other people so you can get points of view and expertise for other parents or organizations that have a much different vision and a much greater depth of experience to pull from has been invaluable for us. If anyone watching this or listening to this wants to get in contact with you, is there a particular website or email address? How would you recommend that if they want more information or they'd be interested in talking to you perhaps about some of your services, they should reach you at this place?

Melissa Donovan (14:17):

Our firm is now known as Texas Trust Law, formerly the We Will Law Firm. Anybody who wants to kind of get more information on that, our website is simple. It's texastrustlaw.com. That's where our name came from. And then if you want to give us a call, I mean, I can give you the number and also give you an email address. The best way to email us or contact us other than going to the website would be to email info@texastrustlaw.com. And that's probably the easiest way to contact the firm.

Mike Carr (14:42):

And to let you guys know, I mean, Brad Wiewel is the one that started this firm. He's the guy that we dealt with. And Melissa is a lot better looking than Brad is. And I think at least as knowledgeable, if more knowledgeable than Brad is. And I'm not going to dig Brad, he's a wonderful individual. But Texas Trust Law for us has had a depth of resources that have been invaluable for all the things that Melissa has talked about. And so I would recommend that you go to texastrustlaw, all one word.com or give them a call. The last time I called, it was amazing. Cindy, Brad's wife, answered the phone and I couldn't believe it. So even though it's a much larger firm now, Melissa, than it once was, every now and then you'll actually get one of the old timers to talk to you.

Melissa Donovan (15:32):

Cindy does a lot of answering the phone. We couldn't do it without her.

Mike Carr (15:35):

Yeah. Yeah. Well, Melissa, you've been wonderful. Thank you again so much for sharing your words of wisdom. And everyone out there that's been watching this, please be sure and of course, continue to take care of your special son or daughter. And just as importantly, be sure and take care of yourself. Until next week, have a great one. See you.