If you’re raising a teenager or adult with profound autism, you already know the fear I’m talking about. It’s the one that shows up at two in the morning, in a waiting room or right in the middle of an ordinary Tuesday when the phone rings and your stomach drops before anyone even says a word. This episode is for parents and caregivers who are staring down the same cliff. The one where school ends, the supports disappear and suddenly you’re the entire system. I’ve been doing this for 36 years with my son Michael and I’m 70 now, which means this isn’t a hypothetical for me anymore. What I share here isn’t theory. It’s the plan Kay and I actually built, piece by piece, because nobody handed us one.
Key Points
- The scariest question in profound autism parenting isn’t “what do I do today” it’s “who takes care of my child when I can’t.”
- There are five pieces every family needs in place: Guardianship, a special needs trust, a letter of intent, a residential plan and a funding strategy.
- Waiver lists for Medicaid-funded services can take a decade or more, so the single most important step is getting your child’s name on that list now, no matter how young they are.
- You can’t out-worry this problem. You can only out-plan it.
Why This Fear Deserves to Be Said Out Loud
I’ve learned that naming a fear takes some of its power away. For years, the question “what happens to my child when I’m gone” just sat there, unspoken, at the bottom of everything else we worried about. When Michael aged out of the school system almost 14 years ago, Kay and I traveled the country: East Coast, West Coast, and the middle of the map looking for a program we trusted enough to leave him in. We didn’t find one. So we moved to Austin, spent six years building a home program with the University of Texas, and eventually that work became the foundation for J13.
I’m not telling you that story to complain. I’m telling you because if you’re feeling like nobody has an answer for you either, you’re not wrong and you’re not alone. There genuinely isn’t a well-marked path for families like ours. But there are pieces you can start putting in place today and every single one of them is a way of reaching into the future and still taking care of your child, even from a room you’re no longer standing in.
The Five Pillars of a Real Plan
1. Guardianship
The day your child turns 18, the law treats them as a fully independent adult capable of making their own legal and medical decisions even if they can’t tell you what they want for breakfast. Families need to figure out early who will be legally recognized to make decisions on their child’s behalf. For us, that meant going through the courts, though it isn’t the only route available and I’ll get into the alternatives in a future episode.
2. The Special Needs Trust
This is the one that blindsides good, loving families all the time. A grandparent leaves your child a little money, meaning well, and that gift can knock them off Medicaid benefits entirely, since the asset limit is often as low as $2,000. Once you’re off that list, getting back on is brutal and the benefits you lose aren’t just for this year, they’re gone for life. A properly structured trust protects against exactly this kind of accidental disaster.
3. The Letter of Intent
Out of everything on this list, this is the one I actually enjoy. It’s not a legal document; it’s a living map of who your child is. The sounds they make and what those sounds mean. The trick that gets them to actually take their medication. What calms them down when nothing else will. It’s written in your own words, for whoever ends up caring for them after you can’t.
4. Residential Transition
Where will your child live once they’re not living with you? At J13, we call this R2R: Respite to Residential. In Texas and in plenty of other states, the waiting lists for this kind of support stretch a decade or two. That means the planning has to start long before a crisis forces your hand, not after.
5. The Money
I won’t sugarcoat this one. Lifetime care for a child with profound autism can run into the millions of dollars. That number sounds absurd until you actually do the math on decades of one-on-one support. The good news is that a lot of that funding already exists inside the system, you just have to know how to access it, including one particular benefit that almost nobody tells you about, which kicks in exactly when you retire or pass away.
The One Thing to Do This Week
If you take nothing else from this, take this. Get your child’s name on the Medicaid waiver list now, regardless of their age. In Texas, that means the CLASS and HCS waiver lists specifically and both have notoriously long waits. We were on ours for 14 years and the only reason we moved up faster was because of Michael’s medical needs. I’ve talked to parents who signed their toddlers up and got funny looks from friends for being “overanxious.” Turns out they were just paying attention early. A free, printable checklist broken down by age what to do now, at 18 and every year after is coming in the show notes next week.
What You’ll Learn
- Why guardianship isn’t automatic once your child turns 18 and why you need a plan before that birthday arrives
- How a well-meaning cash gift from a relative can accidentally cost your child their Medicaid benefits for life
- What a letter of intent actually is and why it matters more than most legal paperwork
- Why residential planning needs to start years, sometimes a decade, before you think you’ll need it
- Where the real money for lifelong care tends to come from and why most families never learn about it
- Why getting on a Medicaid waiver list today, no matter your child’s age, is the single most urgent step
- Why this kind of planning is an act of love, not just paperwork
Notable Quotes
“You cannot outworry this problem. You can only outplan it.” -Mike Carr (03:39)
“Naming this fear, naming what scares us takes a little bit of its power away.” -Mike Carr (01:07)
“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.” -Mike Carr (04:26)
“It’s really, really hard to get back on the list once you’ve been kicked off.” -Mike Carr (05:18)
“You have to move before a crisis forces it.” -Mike Carr (06:12)
“The single most powerful thing you can do this week before the trust, before the attorney, before anything is to get your child’s name on those lists.” -Mike Carr (07:50)
“It’s you reaching out into the future and still taking care of your child even when you can’t be in the room.” -Mike Carr (03:39)
Resources & Links
- J13 (Austin, TX) – The organization Mike and his wife Kay founded, which grew out of the home program they built with the University of Texas for their son Michael.
- R2R (Respite to Residential) – J13’s framework for helping families move from respite care toward long-term residential support.
- CLASS Waiver (Texas) – A Texas Medicaid waiver program families can apply to for long-term services and support funding.
- HCS Waiver (Texas) – Another key Texas Medicaid waiver list mentioned as essential to join as early as possible.
- Email: mike@autismlabs.com – Mike’s personal email for parents who are in crisis or need immediate direction.
- One-Page Checklist – If you’re not sure what step comes after this, this checklist lays it out clearly what to do now, what happens at 18 and how to plan long-term without missing anything critical.
Timestamped Outline
00:05 The phone call that changed how Mike sees “small” emergencies
01:07 Naming the real fear: what happens when I’m gone
02:00 Mike and Kay’s search for a program and why they moved to Austin
02:50 Introducing Michael and what profound autism looks like day to day
03:39 “You cannot outworry this problem” the planning mindset
04:26 Pillar 1: Guardianship explained
05:18 Pillar 2: The special needs trust and the $2,000 asset trap
06:12 Pillars 3 & 4: The letter of intent and residential transition
07:05 Pillar 5: The real cost of lifelong care
07:50 The one step to take this week: Medicaid waiver lists
09:14 Where to get help right now and what’s coming next week
Does ABA therapy work for adults with profound autism, not just kids?
ABA-style, individualized support can still be useful for adults, but the focus usually shifts from early intervention goals to functional skills, safety, and quality of life. The bigger challenge most families run into isn’t whether it works, but finding adult programs willing to take on someone with significant support needs at all.
How do I handle aggressive or unsafe behaviors as my child gets older and stronger?
Behavior support becomes more physically demanding as your child grows, so many families lean on structured routines, one-on-one care and professional behavioral guidance to manage it safely. It’s also worth building this into your residential and letter-of-intent planning, since future caregivers will need this same knowledge.
What if my child is nonverbal and can’t tell caregivers what they need?
This is exactly what a letter of intent is for it captures the sounds, cues and routines only you currently understand, written down for the next person who steps in. Many families also work with speech-language professionals on augmentative communication tools as an additional layer of support.
Why is it so hard to find services once my child ages out of school?
Once school ends at 22, most of the built-in structure and one-on-one support disappears overnight and residential or day programs for adults with profound autism are in short supply. Waiting lists for state-funded support, like Texas’s CLASS and HCS waivers, can run a decade or longer, which is why early planning matters so much.
When should I start planning for guardianship and long-term care?
As early as possible ideally years before your child turns 18, since guardianship and waiver list applications both take significant lead time. Mike’s own family waited 14 years for a waiver spot, so starting “too early” isn’t really a risk.
Is a special needs trust really necessary if we don’t have much money to leave?
Yes, the trust isn’t just about your money, it’s about protecting against any future gift, inheritance, or settlement that could accidentally push your child over the Medicaid asset limit. Even a small, well-intentioned gift from a relative can cost a family years of benefits if there’s no trust in place.
Transcription
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 in yet another doctor’s waiting room, but we definitely think about it every single birthday. It really hits us. When our son was in kindergarten, my wife Kay and I were both working in our home office and the phone rang. Kay picked it up and heard the school nurse on the other end: “It’s about your son. You need to come right now.” My mind raced through every possible scenario, another seizure, did he swallow a puzzle piece, did another boy bite him again because he was too loud. Then came the punchline from the nurse: he had a green runny nose. That absurd, frustrating moment sort of crystallized everything for us about what’s wrong with how we handle care for those with profound autism.
Mike Carr (01:07): If a simple runny nose could derail an entire day, what happens when school isn’t there at all? What happens when our son ages out of school at 22, when he falls off that proverbial cliff and all the school supports end no more routine, no more one-on-one help from his aide, no more activities with the friends he knows? Who takes care of all of that? That’s the question every one of us parents thinks about: what happens to my child when I’m gone, or who takes care of my child when we can’t? These are scary questions, but I think we need to talk about them. Naming the fear takes a little of its power away. Really, this fear is about lifelong care for our child, and for yours too.
Mike Carr (02:00): I remember asking these questions 30 years ago and feeling like nobody had an answer, not the school, not the state, not even the internet. Believe me, Kay looked and looked and looked. When Michael aged out of the school system almost 14 years ago, we couldn’t find a single program we were comfortable with, even after traveling across the country East Coast, West Coast, the middle of America. So we moved to Austin, near the University of Texas, and spent the next six years working with UT to build our own home program. That program eventually led us to start J13 almost four years ago. Over the next few weeks, I want to share more of that journey and the steps we took to get our son ready, in case it helps you in yours.
Mike Carr (02:50): If you’re new here, I’m the dad of a 36-year-old son named Michael, who is profoundly autistic. He’s nonverbal, has seizures and pica behavior, and can become aggressive, sometimes very aggressive. He needs one-on-one care from the moment he wakes up until he goes to bed, and he still wets the bed most nights. He also has a wonderful sense of humor, an infectious laugh, and wants to high-five everyone he meets. We love him dearly, and we want him taken care of but we can’t do it forever. When I talk about the fear of what happens when we’re gone, I’m not speaking theoretically. Kay and I both turn 70 this year, so this carries a bit more urgency for us than it might for you. Still, I think it applies wherever you are in this journey.
Mike Carr (03:39): I’m not a lawyer or a financial advisor, so please consult experts in your area before acting on anything here. But here’s the one thing I’m confident telling you: you cannot outworry this problem. You can only outplan it. Making the plan is the most hopeful, most loving thing you can do. Every piece you put in place is one less thing that gets decided in a panic later. It’s how you reach into the future and keep taking care of your child, even when you’re not in the room. So let’s start planning.
Mike Carr (04:26): Here are five things to start thinking about, if you haven’t already. Number one: guardianship. The day your child turns 18, the law treats them as an adult capable of making their own decisions, even if they can’t tell you what they want for breakfast. We need to figure out who’s legally allowed to make decisions on your child’s behalf. For us, that meant going through the courts, though there are other options I’ll cover in next week’s episode.
Mike Carr (05:18): Number two: the special needs trust. This one catches a lot of families off guard. Say a grandparent leaves your child a little money out of love that gift can knock them off the Medicaid benefits list, since the asset limit is often just $2,000. Once you’re off, you lose not just this year’s benefits but every year going forward potentially millions of dollars, gone, because of one small mistake. And getting back on that list is extremely hard. There’s a tool that prevents this, and I’ll walk you through it in a couple of weeks.
Mike Carr (06:12): Number three: the letter of intent. This one’s actually enjoyable to write. It’s not a legal document, it’s a full map of who your child is: the sounds they make, the trick you’ve learned for getting them to take their medication, what calms them down. It’s written in your own words, for whoever cares for them after you. I’ll cover this in more detail soon. Number four: residential transition where will they live once they’re not at home with you? At J13, we call this R2R, respite to residential. In Texas, and many other states, the waiting list for this kind of support runs a decade or two, so you have to start planning before a crisis forces it.
Mike Carr (07:05): Number five: the money. I won’t sugarcoat this, we’re talking about potentially millions of dollars over a lifetime for a child with profound autism. That might sound extreme, but it isn’t once you look at the real cost of lifetime care. A lot of that funding already exists in the system if you know how to access it, including one benefit almost nobody tells you about, which kicks in exactly when you retire or pass away. I’ll cover all of that in an upcoming episode.
Mike Carr (07:50): So that’s the plan: guardianship, the trust, the letter of intent, residential planning, and the money. But if you take just one thing from this episode, take this start now, whatever age your child is, by getting them on the Medicaid waiver list. That waiver is often where the real long-term funding comes from, but the waiting list can be long. We were on ours for 14 years, and we only moved up because of Michael’s medical needs. In Texas, the two big lists are CLASS and HCS. I’ve known parents who signed their toddlers up and got teased for being overanxious turns out they were just being smart. We’re putting together a free, one-page checklist broken down by your child’s age: what to do now, at 18, and every year after. It’ll be in the show notes next week.
Mike Carr (08:38): I know this is a lot, but the key is to break it into small steps and take them one at a time a little bit each week, not necessarily every day. And you’re not doing this alone; there are a lot of us further down this same road, and we’ll walk through it together over the next few episodes. If you’re in crisis right now, or just can’t wait, email me directly at mike@autismlabs.com. I read every email. I might not have the answer, but between me, Kay, and others we know, we’ll do our best to point you in the right direction.
Mike Carr (09:14): Next week, we’ll talk about guardianship, what it actually is, when you need it, the alternative Texas wants families to consider first, and the one step almost everyone forgets. I’ll also share that checklist so you can download or print it. One last reminder: everything in this series is just me, a dad sharing what he’s learned. It’s not legal or financial advice, and I’m not an expert in these areas. Please take these decisions to a licensed special needs attorney and a financial planner who understands disability benefits. Thanks for being here. Take care of your child, and take care of yourself too. See you next week.
