If you’re raising a child with profound autism, you already know the fear doesn’t come from one big moment; It comes from the thousand small unknowns stacked on top of each other. What happens when I can’t do this anymore? Who will know how he takes his medicine or what her hand-flapping means or how to keep him safe during a seizure? I’ve lived those questions, and in this episode I break down the nine-box checklist my wife Kay and I wish someone had handed us years ago. This isn’t a theory. It’s what actually worked and didn’t as we planned for our son Michael’s adult life. If you’re a parent or caregiver trying to get ahead of the transition instead of being blindsided by it, this one’s for you.
Key Points
- Getting on Texas’s HCS and CLASS Medicaid waiver lists costs nothing and should happen as early as possible. Some families wait over a decade for a slot to open.
- A Letter of Intent (the informal, unofficial notes about your child’s routines, triggers and comforts) is one of the easiest and most overlooked steps in autism transition planning.
- Keeping your child’s assets under $2,000 matters an ABLE account or special needs trust protects their Medicaid benefits from being wiped out by well-meaning gifts.
- Guardianship decisions, Social Security applications and residential research all have real deadlines tied to your child’s 18th birthday so starting six months early isn’t paranoid, it’s necessary.
The Checklist That Started It All
Last week I told you about the phone call that changed everything for our family. The school nurse calling us in over what turned out to be a runny nose and how it got me thinking about the bigger question every special needs parent eventually faces. What happens to my child when I’m gone? The answer isn’t complicated, even if it’s not easy. It’s a plan. I put together a one-page, nine-box checklist, and today I want to walk through every box so you understand exactly why it’s there.
Start With the Waiver Lists Today, If You Can
The very first box isn’t guardianship or a trust. It’s getting on the waiver lists, because it costs you nothing and the only thing that happens when you wait is that you lose time that you can’t get back. In Texas, there are two waiver lists: HCS, which runs through your local LIDDA (Local Intellectual and Developmental Disability Authority call 211 or search “Texas LIDDA directory” to find yours) and CLASS, a separate statewide list you can reach at 877-438-5658.
Get on both. You won’t know which one comes through first or whether your child qualifies for one or both and I’ve seen families switch from CLASS to HCS later because HCS often funds more. Kay and I waited fourteen years for our son to reach the top of the HCS list. Some parents sign their toddlers up and get told they’re being overly anxious. They’re not. They’re being smart.
Write the Letter of Intent Tonight
This one isn’t urgent, but it’s easy and it matters more than people think. Open a note on your phone right now and start writing down the things that live only in your head. How your son takes his medication, what your daughter’s hand-flapping means when she’s happy versus when she’s headed toward a meltdown, exactly what to do if he has a seizure. It’s not a legal document. Nobody needs to notarize it. It’s just everything the next person caring for your child would need to know, written down so they don’t have to guess.
Protect the $2,000 Limit
Here’s a detail that catches families completely off guard. If your child has more than $2,000 in their own name, they can lose their Medicaid waiver benefits entirely even if that money came from a well-meaning grandparent slipping them a birthday check. This is where an ABLE account comes in. The first $100,000 in one of these accounts doesn’t count against that limit (in Texas, set one up at texasable.org), though there are annual contribution caps. Tell every relative this is where the money goes, not into a regular savings account with your child’s name on it.
The Countdown to 18: Guardianship and Trusts
Once your child approaches adulthood, the legal clock starts ticking fast. In Texas, you can actually file for guardianship when your child is 17 and a half so it takes effect right at 18, with no gap where no one has legal authority to make decisions for them. But courts have to rule out less restrictive options first, like a supported decision-making agreement, which lets your child keep making their own choices with help from someone they trust. If your child is profoundly affected and can’t communicate or make critical decisions, full guardianship is probably necessary. If they have more capacity, it might not be the right fit. Sit down with a special needs attorney about six months before that birthday, and let them help you figure out what actually fits your child. Don’t base a decision this big on a podcast.
The special needs trust is the other piece of this stage. If you want to save more than the ABLE account’s $100,000 cap allows, you need a trust set up by an attorney before your child turns 18. Even with nothing in it yet, having it in place means relatives have somewhere to put money that won’t put your child’s benefits at risk.
Start Touring Residential Options Now
Where will your child live when you can’t be the one meeting all their needs day to day? Even if it feels years away, start touring group homes and residential providers now. Ask your service coordinator for a list of HCS and CLASS providers near you. Here’s why this matters. When a waiver slot finally opens after years of waiting, you often don’t have much time to decide. You don’t want to be forced into picking a living situation under pressure because you never looked at your options ahead of time.
Turning 18: Social Security, Reports and the Call You’ve Been Waiting For
The month your child turns 18, call the Social Security Administration at 800-772-1213 and apply for adult SSI. Here’s the good news. Once they’re 18, your income as parents no longer counts against their eligibility. While you’re on that call, ask specifically about Disabled Adult Child (DAC) benefits if your child’s disability started before age 22, they may be able to receive 50% of your Social Security check once you retire or become disabled and up to 75% if you pass away. Nobody volunteers this information. You have to ask for it by name.
If a court grants you guardianship, don’t forget the annual report. Missing that deadline can put your guardianship at risk, so put it on the calendar like a birthday. And when that waiver call finally comes after years on the list, answer it right away and have your questions ready. That letter of intent you started on day one becomes invaluable here, giving your child’s new provider everything they need to know about who your child really is.
What You’ll Learn
- Why the HCS and CLASS waiver lists should be the very first call you make, regardless of your child’s age
- How a simple Letter of Intent protects your child even though it’s not a legal document
- What the $2,000 asset limit means for your child’s Medicaid eligibility and how an ABLE account or special needs trust protects against it
- When to start the guardianship process in Texas and why supported decision-making might be a better fit for some kids
- Why touring residential and group home options early prevents rushed decisions later
- What to specifically ask Social Security about when your child turns 18, including the often-overlooked Disabled Adult Child benefit
- Why acting quickly when a waiver slot opens is critical and what happens if you don’t
Notable Quotes
- “What happens to my child when I can no longer take care of him when I’m gone?” -Mike Carr (00:55)
- “It’s just two words: a plan.” -Mike Carr (00:55)
- “It costs you nothing and it only gets worse the longer you wait to do it.” -Mike Carr (02:25)
- “Your child cannot have more than $2,000 in his or her name where you run the risk of losing all your Medicaid waiver benefits.” -Mike Carr (05:42)
- “This isn’t a legal document. Nobody has to notarize it. It’s just everything that’s in your head written down.” -Mike Carr (04:51)
- “You have to know the name of the benefit and you have to ask for it by name.” -Mike Carr (11:22)
- “When you get to the top of the waiver list and that call comes in, answer it.” -Mike Carr (13:06)
Resources & Links
- Texas LIDDA Directory – Search “Texas LIDDA Directory” online to find your Local Intellectual and Developmental Disability Authority, which handles HCS waiver applications for your area.
- LIDDA 211 Texas – A statewide phone line you can call to get connected to your local LIDDA office.
- CLASS Waiver Program – A separate Texas Medicaid waiver list, reachable at 877-438-5658 that can offer earlier funding access for some families.
- Texasable.org – Texas’s ABLE account program, letting families save up to $100,000 for a child with disabilities without jeopardizing Medicaid eligibility.
- Social Security Administration – Call 800-772-1213 to apply for adult SSI benefits and ask about Disabled Adult Child (DAC) benefits.
- J13 (R2R Program) – A nonprofit in Austin offering a Respite to Residential program, helping young adults gradually adjust to time away from home before a full residential transition.
- One Page Checklist – Download here
Timestamped Outline
- 00:05 Revisiting the call that started this journey
- 00:55 The real question every special needs parent faces
- 01:45 Introducing the nine-box transition checklist
- 02:25 Box 1: Getting on the HCS and CLASS waiver lists
- 04:06 Box 2: Writing your Letter of Intent
- 05:42 Box 3: Protecting the $2,000 asset limit with an ABLE account
- 06:35 Box 4: Guardianship and supported decision-making before age 18
- 08:10 Box 5: Setting up a special needs trust
- 08:51 Box 6: Researching residential and group home options early
- 09:43 Box 7: Applying for adult SSI at 18 and asking about DAC benefits
- 12:07 Box 8: Annual guardianship reporting requirements
- 12:52 Box 9: What to do when the waiver call finally comes
Is ABA therapy available for autistic adults, not just kids?
ABA and similar behavioral supports can continue into adulthood, but access often depends on your state’s Medicaid waiver program and your child’s specific waiver plan. This is one more reason getting on waiver lists like HCS or CLASS early matters can open the door to funded adult services later.
How do I handle behavior challenges as my autistic child becomes an adult?
A Letter of Intent, where you document specific triggers, calming strategies and routines is one of the most practical tools for this. It ensures that caregivers, providers or group home staff understand your child’s behavior patterns even if you’re not the one explaining it at the moment.
What if my nonverbal or minimally verbal adult child can’t communicate their needs?
This is exactly why guardianship or a supported decision-making agreement matters so much and why the Letter of Intent should include detailed notes on nonverbal cues, like specific gestures or behaviors and what they mean. A special needs attorney can help determine the right level of legal support for your child’s communication needs.
Why does it take so long to get autism services and waiver funding?
Waiver programs like HCS and CLASS have long waiting lists, sometimes over a decade, because funding and slots are limited relative to demand. The best strategy is getting on these lists as early as possible even if placement feels far off, since the wait itself is often the biggest bottleneck.
What happens to my adult child’s benefits if family members give them money?
If your child’s personal bank account exceeds $2,000, they can lose Medicaid waiver benefits entirely. Setting up an ABLE account or special needs trust before that happens gives family members a safe place to contribute money without risking your child’s eligibility.
Do I need a lawyer for guardianship or can I do it myself?
While it’s technically possible to file without an attorney, a special needs attorney can help you understand whether full guardianship or a less restrictive option like supported decision-making fits your child’s abilities and they can help you navigate Texas’s requirement that courts rule out less restrictive alternatives first.
Transcription
Mike Carr (00:05): Welcome back to Autism Labs. Last week, we talked about the call that changed our lives as parents of a special needs child. It was when the school nurse called us out of the blue one morning and said, “It’s about your son. You need to come to school immediately.”
Now, how would you react to that call if you were the parent of a child at school with special needs? We were thinking, is he having another seizure? Or maybe he swallowed that puzzle piece again and this time it got lodged in his throat. But we didn’t know. Guess what the reason for the call actually was? Turns out he had a green runny nose. That’s right, a runny nose. We knew the school was trying to find excuses to kick him out, and here was another one for the day.
Mike Carr (00:55): As I mentioned last week, this got us thinking about a question I think you’ve probably already asked yourself, or will soon: what happens to my child when I can no longer take care of him — when I’m gone? I touched on this a bit last week, and today I want to go into more detail. Really, it comes down to how we conquer the uncertainty, the worry, and the fear that all of this creates. And the answer is actually pretty simple. It’s just two words: a plan.
Mike Carr (01:45): I mentioned a simple five-part plan last week — guardianship, special needs trust, letter of intent, residential research, and the money — and I promised a one-page checklist. That checklist is now complete and available in the show notes, so you can download it during the podcast or afterward from the video. Today I want to walk you through it box by box, so when you’re reviewing it, you understand exactly why each of the nine boxes is there. Next week I’ll start diving into individual pieces in more detail, like guardianship and a few other things.
Now, I’m not a lawyer or a financial planner. I’m just a dad who’s done this, so I can’t give you legal advice. I strongly recommend finding a special needs attorney or financial planner who knows more than I do and can walk you through this in more detail. But let me share what makes sense for a starter plan.
Box 1: The Waiver Lists (02:25)
The top part of the checklist you can do at any age, and the first box isn’t guardianship or the trust — it’s the waiver. I put it first because it costs you nothing, and it only gets worse the longer you wait. It really is about the money — sometimes a lot of it — that can make your child’s future so much better.
In Texas, there are at least two lists I recommend getting on: HCS and CLASS. HCS goes through your LIDDA (Local Intellectual and Developmental Disability Authority), which differs depending on where you live. You can call 211 — not 911, but 211 — or search online for “Texas LIDDA Directory” to find the office closest to you. CLASS is a separate list with its own process, reachable through a statewide number: 877-438-5658.
(03:21): I’d strongly recommend contacting both, since you don’t know which one you’ll rise to the top of first, or whether your child will qualify for both. We know parents who rose to the top of the CLASS list first, accepted those waiver dollars, and started getting funding right away — then later, when they reached the top of the HCS list, switched over, because HCS often provides more funding for more services. It’s not quite that simple, since CLASS covers a few things HCS doesn’t, but the important thing is: get on both lists as soon as possible.
(04:06): Kay and I were on the HCS list for fourteen years before our son rose to the top, and honestly, the only reason he did was some medical needs that bumped him up. I’ve talked to parents who signed their kids up as toddlers, and a lot of people thought that was overly anxious or overprotective. It turns out they were just being smart.
Box 2: The Letter of Intent (04:06)
Why not start this one tonight? It’s not the most urgent item, but it’s easy, and it matters. Just open a note on your phone. Write down the exact way you get your son to take his medication, or what your daughter’s hand-flapping means when she’s happy versus when she’s upset and heading toward a meltdown. Or write down exactly what to do if he has a seizure, to help him get through it comfortably.
(04:51): This isn’t a legal document — nobody has to notarize it. It’s just everything in your head, written down, so the next person caring for your child doesn’t have to guess.
Box 3: Protecting the $2,000 Limit (04:51)
This box is about money coming in the wrong way. If grandma wants to slip your child a hundred bucks for his birthday, that’s love. But if that money lands in a bank account in his own name and pushes him over $2,000, he can lose all his benefits — permanently.
(05:42): I want to say that again: your child cannot have more than $2,000 in their own name, or you risk losing Medicaid waiver benefits entirely. Imagine being on the list fourteen years, finally qualifying, and then losing it all because of that limit. It’s incredibly hard to get that funding back once it’s gone.
The solution is something called an ABLE account. In Texas, the first $100,000 in one of these accounts doesn’t count against the $2,000 limit — you can set one up at texasable.org. There are annual contribution limits, around $19,000–$20,000 a year, but it’s a great way to build savings without jeopardizing other benefits. Tell every grandparent and family member: this is where the money goes, not into a regular savings account in your child’s name.
Box 4: Guardianship (06:35)
The next set of boxes is about the period right before your child turns 18 — this is where the legal clock starts ticking. Guardianship isn’t always the first option to reach for, but it may be exactly what your child needs, especially if they can’t understand or make critical decisions for themselves.
(07:20): In Texas, you can actually file the guardianship application when your child is around 17 and a half, so it’s ready to take effect right at 18 — no gap where no one has legal authority to make decisions for them. But before granting full guardianship, Texas law requires the court to rule out less restrictive options, including something called a supported decision-making agreement, which lets your child keep making their own decisions with help from someone they trust.
If your child is profoundly autistic, nonverbal, and has significant cognitive challenges — like our son, whose IQ is around 40 to 50 — full guardianship is probably necessary. If your child has more communication ability and some capacity to make decisions, full guardianship might not be the right fit. Either way, don’t base this decision on a podcast. Sit down with a special needs attorney, ideally about six months before the 18th birthday, and figure out together what fits your child best.
Box 5: The Special Needs Trust (08:10)
This is the one that catches families off guard. If you don’t want to rely solely on an ABLE account, or you hope to save more than its $100,000 cap, you need a special needs trust — set up by an attorney before your child turns 18. Even with nothing in it yet, the moment it exists, relatives have somewhere to contribute money.
(08:51): The ABLE account has that $100,000 cap and annual contribution limits; a trust can hold much more. So if you’re planning to save significantly over time, a trust is often the better option. You can also do both — we chose the trust route, though some families with fewer resources go with the ABLE account instead. Either way, you need somewhere to park money so your child doesn’t exceed that $2,000 limit.
Box 6: Residential Research (08:51)
Where will your child live when you feel you can no longer meet all their needs? At our nonprofit here in Austin, J13, we run a program called R2R — Respite to Residential — where young adults get used to spending nights away from home gradually, instead of an abrupt shift from living at home their whole life to suddenly being in a group home. That transition period matters. We don’t yet offer full residential placement at J13, but this is exactly the kind of thing I want you thinking about now: start touring places, even if placement feels years away. Ask your service coordinator for a list of HCS and CLASS providers near you.
(09:43): This matters because when a waiver slot finally opens after years on the list, you won’t have much time to decide. You might feel pressured to quickly choose a group home before you’ve had a real chance to research your options. Starting early means that when the funding becomes available, you already know what’s out there.
Box 7: Social Security at 18 (09:43)
Once your child turns 18, this becomes real every year. The month they turn 18, call the Social Security Administration at 800-772-1213 and apply for adult SSI benefits.
(10:27): Here’s the good news: once they’re 18, your income as parents stops counting against their eligibility. So many families go through the process before their child turns 18, only for Social Security to say their child doesn’t qualify because the parents earn too much. That limit disappears at 18.
(11:22): While you’re on that call, ask about something few people know to ask for: Disabled Adult Child (DAC) benefits. If your child’s disability started before age 22, and you retire or become disabled yourself, your child may be eligible for 50% of your Social Security check on top of their own benefits — and if you pass away, that can jump to 75%. This isn’t automatic. You have to know the name of the benefit and ask for it specifically.
Box 8: Annual Guardianship Reports (12:07)
This one’s small, but don’t skip it. If the court granted you guardianship, there’s an annual report you must file, and missing that deadline can put your guardianship at risk. Put it on the calendar, just like a birthday. If you went the supported decision-making route instead, keep a signed copy with your child’s ID and medical file so you can access it quickly if needed.
Box 9: The Call You’ve Been Waiting For (12:52)
This is the one you’ve been waiting fourteen or eighteen years for — the call saying you’ve reached the top of the HCS or CLASS list and funding is available. Over your child’s lifetime, depending on how significant their needs are, this waiver funding can end up covering millions of dollars in care. That sounds like a lot, but it’s really what’s required to give your child the one-on-one support they need if they’re nonverbal, have a low IQ, and face other medical challenges.
(13:06): When that call comes, answer it. Ask the questions you’ve already prepared, and don’t sit on it for days — that slot can vanish, and you could end up back at the beginning of the list.
(13:48): This is where the letter of intent and all your planning pay off. You’ll already know who you want as a provider, and that letter of intent — everything that makes your child unique, every trick to get them to take their medicine or fall asleep without a meltdown — becomes invaluable to whoever takes over their care once they age out of school at 22.
That’s all nine boxes. You don’t have to start on any of them today, but that first one — getting on the HCS and CLASS lists — is just a phone call or a click away, and it’s a big deal. Try to do that as soon as you can.
Next week, I’ll go deeper into some of these pieces — guardianship and a few others — so you know exactly what’s involved and what alternatives might be available to you. One more reminder before I go: everything in this series comes from my own experience. It’s not legal or financial advice. Please talk to someone who knows more than I do before you act on any of this.
(14:29): Thanks for being here today. Take care of your child, and take care of yourself too. I’ll see you next week. Have a great one.
