Autism Future Planning: 9 Steps Every Parent Must Take

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

In this episode of Autism Labs, Mike Carr shares a deeply personal and practical guide to future planning for children with autism especially those with higher support needs.

After a moment that exposed how unprepared systems can be, Mike walks through a 9-step planning checklist designed to reduce fear, uncertainty and costly mistakes.

You’ll learn:

• Why getting on Medicaid waiver lists early can mean access to millions in lifetime support
 • The critical $2,000 asset rule and how families accidentally lose benefits
 • How ABLE accounts and special needs trusts protect your child financially
 • What to know about guardianship before your child turns 18
 • Why residential planning should start years before it’s needed
 • How to create a Letter of Intent to guide future caregivers

This episode is not legal or financial advice but it is real-world guidance from a parent who has lived it.

🎧 Watch the full podcast to Download the free 1-page checklist on the comment section: https://youtu.be/AdVUyESJF1w?si=l3hHOl5M1mlj3bEI

Transcript

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 who was at school and they had 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. Oh my goodness. But don't know. Guess what the reason for the call was? Turns out he had a green runny nose. That's right, a runny nose. Now we knew the school was trying to find excuses to kick him out and here was another one for this day. As I mentioned last week, this got us to thinking about the question I think you probably have been thinking about or will start thinking about too.

(00:55):

What happens to my child when I can no longer take care of him when I'm gone? And I talked about a little bit about this last week and today I want to dive into it in a little more detail. And really it's about how do we conquer uncertainty in all the worry and the fear that it creates? And the answer is actually pretty simple. It's just two words, a plan. Now I mentioned an initial 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. So that checklist is now complete. It's available in the show notes so you can download it during the podcast, the video afterwards. Today I want to walk you through it box by box so that when you're reviewing it, you know exactly why each of the nine boxes is on the checklist.

(01:45):

And then next week I'll start diving into the pieces in more detail like guardianship and probably a few other things. Now I'm not a lawyer or financial planner. I'm just a dad who's done this so I can't give you legal advice. And I do recommend you find a special needs attorney or financial planner that knows a lot more than I do and can take you through this in more detail and answer your questions more than I'm going to be able today. But let me share with you what makes sense for a starter plan. The top part of the checklist, you can do at any age. And the first box isn't guardianship. It isn't the trust. It's the waiver. And I put it first because it costs you nothing and it only gets worse the longer you wait to do it. And it really is about the money.

(02:25):

Sometimes lots of it that can make your child's future so much better. Now in Texas, there are at least two lists I recommend you get on. HCS and CLASS. HCS goes through your LIDDA, L-I-D-D-A, Local Intellectual Developmental Disability Authority. And this is different depending upon where you live in Texas. So you can call 211, not 911, but 211, or you can just go online and search for Texas Lidda, L-I-D-D-A Directory and you'll find what office is closest to you in your county or in your community that you can contact. Now class is the second list and it's a separate list and it goes through a totally different process. And there's a statewide phone number you can call and that's 877-438-5658. I would strongly recommend you contact both and get on both lists because you don't know yet which one you're going to rise to the top at first and you don't know if your child's end up qualifying for both.

(03:21):

We know, for instance, some parents who put their kiddo on both lists, they rose to the top of the class list first so they accepted the class waiver dollars and they started getting some money right away. And then later when they rose to the top of the HCS list, they switched. They stopped class and they started HCS because in many cases, HCS provides more funding for more things, compensates colleagues and helpers more than class does. It's not quite that simple because class does cover a few things that HCS doesn't, but the important thing for purposes of today is get on both lists as soon as possible. Kay and I were on the HCS list for 14 years before our son rose to the top. And the only reason we got him to the top is he had some medical needs that sort of bumped him to where he'd been sitting for a few years.

(04:06):

I've actually talked to parents who signed up when their kiddos were toddlers and a lot of people though that was ridiculous. They were being too anxious, they were being overprotective and it turns out they were really just being very prudent and very smart. The second box is the letter of intent. Now why don't you start that tonight? And it's not because it is the most urgent thing on the list, but it is important and it's easy and it really does matter. Just open a note up on your phone. Write down maybe the exact way you get your son to take his medication or write down maybe your daughter's hand flapping and what it means when she's happy versus what does it mean when she's upset and anxious and fixing to have a meltdown. Or maybe write down when he or she's had a seizure, here's exactly what you need to do to make them comfortable and help them get out of that seizure.

(04:51):

Now this isn't a legal document. Nobody has to notarize it. It's just everything that's in your head written down so the next person who cares for your child doesn't have to guess. Now the third box is about money coming in the wrong way. Now if grandma wants to slip your child hundred bucks for his birthday, that's love. But if that money ends up in his bank account, a bank account which is in his own name and if it pushes him over $2,000, he can lose all his benefits forever. This is so important. I want to mention it again. 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. So you've been on the list for 14 years, you finally qualify, you're starting to get a lot of money for Medicaid. Unfortunately, you forgot about that $2,000 limit.

(05:42):

Medicaid finds out about it and poof, that money's gone and it's really hard, really, really hard to get that back. Now there is a solution to this and the one I want to talk about right now is called an Able account, A - B-L-E. The first $100,000 in one of these accounts does not count against that $2,000 limit. So in Texas, you can set one up going to texasable.org. So just T-E-X-A-S-A-B-L-E.org, texasable.org. Takes just a few minutes. Now you can't put all $100,000 in at once. There are some limits, 19, $20,000 a year, but it's a great way to build savings for your child without jeopardizing your other benefits. So tell every grandparent, aunt, family member, this is where the money goes. Not into a normal savings account with your child's name on it. Now the next set of boxes is about right before they turn 18.

(06:35):

This is where the legal clock starts ticking. The fourth box is guardianship. And in Texas and maybe your state too, it's not the first one you can reach for, but it may be what you absolutely need. And this is important, especially if your child cannot understand or make critical decisions for themselves. Here's what I've learned since we went through it with Michael. Texas actually lets you file the guardianship application when your child is like 17 and a half. So it's ready to take effect when they turn 18. So there's no gap. There's no gap when they're a legal adult and nobody else can make a decision for them, which we don't want in Michael's case because he doesn't understand hardly anything about what's affecting his life. But before a judge in Texas will grant full guardianship, the law requires them to rule out less restrictive options.

(07:20):

And one of those options is called a supported decision making agreement. It lets your child keep making their own decisions with someone they trust helping them. Now, if your child's profoundly autistic and they can't talk and they have a variety of other problems and maybe an IQ like our son does of 40, 50, you're probably going to need that full guardianship. But if your child's lower support and they have some communications and some understanding, some ability to make decisions, then maybe that full guardianship isn't the best decision. So regardless, don't base your decision on this podcast. This is where you really need to sit down with a special needs attorney, ideally about six months or so before that 18th birthday and ask them and have them figure out with you what best fits your child. The fifth box is the special needs trust. And this is the one I mentioned last week that catches families off guard.

(08:10):

If you don't want to do the ABLE account or if you hope to save more than $100,000 for your child, you really need to set this trust up. It needs to be set up by an attorney before your child turns 18. Even if there's not a dime in it yet, the moment it exists, you can have somewhere, you will have somewhere that all those relatives can start money, put money into the pot. So you can use the ABLE account, but that's limited to $100,000 and it's got a cap on how much you can put into it each year. Trust you can put a lot more money into. So the trust in many cases is the better alternative if you're going to try to save a whole lot of money over time. You can do both. We chose the trust route. Some folks that don't have quite those financial resources may go with the ABLE account.

(08:51):

Regardless, you need a place you can park money for your child so they don't exceed that $2,000 limit. The six box about residential. Where are they going to live when you don't feel you can take care of all their needs? Now we have R2R program at J13, our nonprofit here in Austin. R2R stands for Respite to Residential. This is where young adults can start getting used to spending a few nights and days away from home versus some traumatic shift that all of a sudden they've been living at home all their lives and all of a sudden they're in a  group home. And that does not go well if there's not that transition period. But we don't yet offer at J13 the full residential option. And that's what I want you to start thinking about. So start touring places now. Even if placement feels like it's years away, maybe ask your list service coordinator for a list of the HCS and CLASS providers near you.

(09:43):

And the reason this is important to start doing now is when that waiver slot finally opens after all those years on the waiting list, you don't have that much time to say, yes, I want the slot. No, I don't. And you might feel pressured to quickly decide on a group home or a living option before you've really had chance to research them fully. You don't want to do that. So the sooner you get started looking at the group homes and residential options, the better. So when your Medicaid dollars are available, you sort of have an idea of where to put them. You don't have to put them in residential right off the bat, but at least you know what the options are that are out there. Now, when your child's 18 or older, this is where it becomes real every single year. And so the seventh box, the month your child turns 18, you should call the Social Security Administration.

(10:27):

The number I have for them is 800-772-1213.

(10:33):

800-772-1213. And here's what the key is. You're going to apply for adult SISI, adult social security benefits for your child. Here's the good news buried in that call. Once they're 18, your income stops counting against them. This is what's happened to so many parents. You hope your child can get some Social Security benefits before they turn 18. So you go through the whole process and Social Security comes back and says, "Nope, because you as mom and dad are earning so much money, your child doesn't qualify. But when they turn 18, that limit goes away. How much money you make does not impact what your child is going to qualify for. That's a big deal. Or whether your child's eligible or not. I shouldn't say what your child qualifies for. While you're on the call talking to Social Security, ask them about something else that very few people know about.

(11:22):

It's called a disabled adult child benefits DAC, Disabled Adult Child Benefits. If your child's disability started before they turned 22 and you decide to retire or you maybe become disabled yourself, your child may be able to get 50% of your social security check on top of their own some more money from Social Security. And if you pass away, that number might jump to 75%. But this is not automatic. No one's necessarily going to say, Hey, DAC is a way to go to get you some more money. You have to know the name of the benefit and you have to ask for it by name. The eighth box is a small one, but don't skip it. If the court granted you guardianship, there's an annual report you have to file. And missing that deadline can put guardianship at risk so you don't want to miss it.

(12:07):

So put it on the calendar just like you write down a birthday. And if you decide to go with a supported decision making route instead of full guardianship, just keep a signed copy with your child's ID and medical file somewhere so you can grab it fast if there's a need for a decision to be made. The ninth box is the one you've been waiting for for 14 or 18 years. And that's when you do get that call saying, "Hey, your name's risen to the top of the HCS of the class list and money's available." And I've already talked about this some, but it's so important. I want to put it on the checklist again because over the lifetime of your child, depending upon how severely a challenge they are, this waiver dollar can end up paying millions of dollars to you. And that sounds like a whole lot of money, but it's really what's going to be required to give your child the kind of care and support they need if they are nonverbal, they have a low IQ, they've got other medical challenges and they really need one-on-one care from the time they wake up to the time they go to bed.

(13:06):

So this is a really big deal. So when you get to the top of the waiver list and that call comes in, answer it. Ask your questions that you've already prepared. Don't sit on it for days because as I've already mentioned, that slot can vanish and then you may be stuck at the beginning of the list all over again and that would not be a good thing. And this is where the letter of intent and all that planning comes into play.You'll have an idea of who you want that new provider to be. You'll have that letter of intent that talks about all the things that make your child so unique and all the tricks and techniques you have to get them to take their medicine, to go to bed at night, not to have a meltdown, all this other stuff. And so that letter of intent given to the group home or given to whomever your provider might be that can start helping you with your child since they're now out of school when they turn 22 is a really big deal.

(13:48):

So that's it. That's all nine boxes. You don't have to start on any of them right now. But that first one, getting on that silly HCS list and that silly class list, two different list is just a phone call or a click away and it's a big deal. So try to do that as soon as possible. Now next week I'm going to go ahead and start talking about some of these in more detail with more information so you know exactly what's involved in the guardianship and some of these other things and what alternatives you might have at your fingertips. So hopefully it'll help you get a little bit more information and further on down the road. But one more reminder before I go. Everything in this series is just me sharing my knowledge. It's not legal or financial advice. Please look to someone that knows more than I do before you lock on a load on any of this stuff.

(14:29):

So thanks for being here today. Take care of your child and take care of yourself too and I'll see you next week. Have a great one. See you.