What Happens to My Autistic Child When I’m Gone?

What happens to your child with autism when you’re no longer there to care for them?

It’s one of the most difficult and most important questions parents face.

In this episode, Mike Carr shares his personal journey as the father of a 36-year-old son with profound autism. From early fears to real-world planning, this episode lays the foundation for what families need to know about lifelong care.

You’ll learn:

• Why planning not worrying is the key to protecting your child’s future
• The 5 essential pillars of long-term autism planning:
  1. Guardianship
  2. Special needs trust
  3. Letter of intent
  4. Residential transition
  5. Funding and benefits
• How one financial mistake could cost families millions in lost benefits
• Why Medicaid waiver lists should be your first step and why timing matters

This episode is part of a step-by-step series designed to help families move from fear to action.

Watch the full podcast here: https://youtu.be/88vmu0whLxw?si=T3fwd-HO0TR4GVJi

⚠️ Disclaimer: This episode shares personal experience and is not legal or financial advice. Please consult qualified professionals for guidance.

Transcript

Mike Carr (00:05):

There's a question a lot of us parents don't say out loud. We might think about it at two in the morning when we can't sleep or maybe when in yet another doctor's waiting room, but we definitely think about it every single birthday. The question really hits us. My wife and I, when our beautiful little boy was in kindergarten, we were both working in our home office and the phone rang. So Kay picks it up. She heard the school nurse on the other end, "It's about your son. You need to come right now." So remind racist throuh possible scenarios. Another seizure. Did he try to swallow another puzzle piece and was it lodged in his throat? Did that other boy bite him again because he was too loud? Then comes the punchline from the nurse. He has a green runny nose. Now this absurd, frustrating moment sort of crystallized everything for us about what's wrong with how we handle those with profound autism.

(01:07):

If a simple runny nose could derail an entire day, what's going to happen when school wasn't there at all? What was going to happen when our son ages out of school at 22, when he falls off the proverbial cliff and all those school supports end? No more going to school routine, no more one-on-one help with his TA, no more activities with his friends and the people he knows at school. Who's going to do all this? So here's the question all of us parents think about. What happens to my child when I'm gone? Or who's going to take care of my child when we can't? Now these are scary questions. I think we need to talk about them. Naming this fear, naming what scares us takes a little bit of its power away. And really this fear is about lifelong care for our child and for your child too.

(02:00):

I can remember asking those questions and feeling like nobody had an answer 30 years ago, not the school, not the state, not even the internet. And believe me, we, and I really mean Kay, my wife, looked and looked and looked. When Michael aged out of the school system almost 14 years ago, we could not find a single program that would take him that we were comfortable with and we traveled all over the country. East Coast, West Coast, middle America, not one program. So what do we do? We ultimately moved into Austin near the University of Texas and we spent the next six years with UT helping us build our home program. And our home program is what led us to starting J13 almost four years ago. So over the next few weeks, I want to share with you a little bit more about the journey we were on and the steps we took to get our son ready.

(02:50):

I think some of this hopefully will help you too in your journey. Now if you're new to this podcast, I'm the dad of a 36 year old son named Michael. And Michael is profoundly autistic. What does that mean? He's nonverbal. He has seizures, pica behavior, and he can get aggressive, sometimes very aggressive. He needs one-on-one care from the moment he wakes up in the morning to when he goes to bed at night. He still wets his bed almost every night, but he's also got a wonderful sense of humor. He has an infectious laugh and he wants to high five everyone he sees. And we love him dearly and want him to be taken care of. And we can't anymore. And when I talk about the fear of what happens when we're gone, I'm not talking about this as a theory. Kay and I turned 70 this year, the big seven zero.

(03:39):

So this may have a little more urgency for us than for you, but I think some of what we're going to talk about is going to help you too, regardless of where you're at in this journey. And I'm not a lawyer. I'm not a financial advisor. So please consult experts in your area before you proceed. But here's the one thing that I've learned that I am confident in saying and telling you, you cannot outworry this problem. You can only outplan it. Making the plan is the most hopeful, the most loving thing you can do. Every piece you put in place is one less thing that gets decided on in a panic. It's you reaching out into the future and still taking care of your child even when you can't be in the room. It's how to best manage the fear. So let's start planning right now.

(04:26):

Here are five things you can start thinking about if you haven't done so already. Number one is guardianship. The day your child turns 18, the law says they're an adult who can make their own decisions even if they can't tell you what they want for breakfast. So we have got to talk about who's legally allowed to make decisions for your child. For us, we ultimately had to go to court, but there are other options you should consider. And I'll be talking about that next week episode. Number two, the special needs trust. Now this is one that catches a lot of families off guard. Let's say grandma leaves your child a little money out of pure love. And that gift, believe it or not, can knock him or her right off the benefits list that he's currently receiving for Medicaid because they're not allowed to have more than $2,000 to their name.

(05:18):

And once you're knocked out, that means you lose all the benefits you've been receiving, not just this year, but for every year for the rest of their lives. We're talking potentially millions of dollars, poof, gone just because of one small mistake. And it's really, really hard to get back on the list once you've been kicked off. So I don't want this to happen to you. And there's a tool that fixes that and I'll walk you through that in a couple of weeks. Number three is the letter of intent. Now this one's actually fun. It's not a legal document. It's the whole map of who your child actually is. The sounds they make, the trick you've learned to getting them to take their meds. The things to calm them down. Written in your own words for whomever's going to take care of them after you. And I'll cover this all with you in more detail in an upcoming episode as well.

(06:12):

Number four, where are they going to live when they're not living home with you anymore? This is all about residential transition. At J13 here in Austin, we call this R2R, which stands for respite to residential. In Texas, the big thing here and the big thing in many other states is, unfortunately, there's a very long waiting list to get the kind of support you need to really start planning for respite and ultimately for residential. I'm talking like a decade or two decades. So you have to move before a crisis forces it. There'll be a lot more to come on this topic in a few weeks too. And number five is the money. And I really don't want to sugarcoat this. We're talking about a lot of money. I mentioned millions of dollars. You may think that sounds ridiculous. It's not for a child with profound autism.

(07:05):

It could easily cost millions of dollars to take care of them for the rest of their lives. But a lot of this funding's already sitting there in the system if you know how to ask for it. And there's almost one benefit in particular almost nobody tells you about that kicks in exactly when you retire or pass away. And so we'll get into all of that in an upcoming episode. So that's the plan. Guardianship, the trust, the letter of intent, where they're going to live and the money. Now, if you just take one thing from this first episode in this little series, you got to take this thing. Start now, whatever age your child is. That means getting on the Medicaid waiver list now. This is where you may eventually get those millions of dollars you're going to need over your child's lifetime to pay for everything they need.

(07:50):

But as I already said, that waiting list can be quite long. We were on that list for 14 years and the only way we got to the top was because of Michael's medical needs that sort of bumped us up. So the single most powerful thing you can do this week before the trust, before the attorney, before anything is get your child's name on those lists. And in Texas, they're two waiver lists that you absolutely want to get on. There's the class and the HCS and those are the two that have long lines. But man, the sooner you get on those, the better. Now I've heard of parents who signed their child up when they were a toddler and all their friends though they were being a little bit overanxious. Turns out they were just being smart. So to make this doable, we're putting together a one-page checklist that lays out the whole plan by your child's age, what to do now, what to do at 18 and what to do every year after.

(08:38):

And it's free. And we'll share it with you next week in the show notes and over to the website. You're going to be able to print this thing out and stick it on the fridge and just start checking the boxes. Now I know this is a lot, but the key is to chunk it down into baby steps and to just take one step at a time to have a plan and to do a little bit, not necessarily every day, but let's just say every week and you're not doing this alone. There are a lot of us out there further down the same road and we're going to walk you through it step by step over the next few episodes. Now, if you're in crisis right now or if you just can't wait or you need somebody to point you in the right direction today, go ahead and email me.

(09:14):

My email is mike@autismlabs.com and I read every email I get. I might not have the answer, but between me and Kay and other folks we know, we'll at least try to help point you in the right direction. So next week we'll talk about guardianship, what it is, when you actually need it. The alternative Texas wants you to consider first and the one step almost everybody forgets. And I'll share the checklist with you so you can download or print that out. And one quick reminder before we go, everything in this series just me, a dad sharing what he's learned. It's not legal or financial advice. I'm not an expert in these areas. Please take these decisions to a licensed special needs attorney and a financial planner who knows disability benefits. So thanks for being here. Take care of your child and yourself too, and I'll see you next week.

(10:02):

See you.