Medicaid for Autism: Funding Tips for Parents

In this episode, Mike Carr addresses growing concerns about potential Medicaid cuts and shares practical funding alternatives for families caring for individuals with profound autism or multiple disabilities. He emphasizes the importance of staying hopeful and proactive, offering guidance through his personal experience and upcoming book. Key alternatives discussed include Social Security benefits (SSI and SSDI), Medicaid waivers like CLASS and HCS (each with different funding caps and waitlists), and ABLE accounts, which allow families to save without affecting benefits. Mike encourages families to plan early, apply for multiple waivers, and reach out directly for support navigating these complex systems.

Transcript

Mike Carr (00:04):

There's been a lot of press recently about cuts to Medicaid and no one really knows what's going to happen unfortunately, but we've got to be prepared, right? And it can be really scary if you've already got some Medicaid assistance, some governmental assistance for your severely autistic kiddo or your son or daughter with multiple IDs, and it may be cut, it may be reduced what to do. So I wanted to cover three funding alternatives, complements, sources in a little bit more detail today and talk about maybe strategies to survive the cuts, whatever they may be. And the idea is this is going to be tough, but to add an element of optimism, remembering who it's for, and keeping those lives as joyous as possible. Here's a little clip of our son playing weak.

(00:56):

Yay, my God. Let's do again. Let's do again, let's go. Let's go, let's go. Yay. Okay. One, he gets a waiver. We're worried about the Medicaid getting cut back, but it can still be as joyous and as positive a time as possible. If you look at some of these alternative sources of funding. And if you need some help or you just don't know what to do, shoot me an email and let me know where you're at and what questions you have, and I'll see if I can help you. I know it's so confusing. My wife navigated this and was incredibly persistent and it was turned down paperwork bureau accuracy. Oh, you got to fill this form out. You got to fill this other form out. And she made it through and she knows how to do it. And I'm not the expert, but I can certainly take your question to her or other people we know maybe get an answer for you.

(01:56):

So just email me, mike@autismlabs.com and I'll try to get back to you within just a couple of days. The first alternative that many of you already have, and let me mention what these three are, and if you know what all three of these are, it may not be worth listening to this video. And we cover all of these in a book that we're fixing to hopefully get printed and produced and out there. And the book's about helping parents with transition and financial is one aspect of that, right? But as your kiddos age out of the school system at 22, very scary. And with the cuts in Medicaid, it's like, what am I going to do? And so we've written a book that takes you through our journey. Our son's now 35, so we've been out of the system for many years. But what we did to get ready for transition, even some of the early days things we were thinking about, some of the problems we had, and then after transition, how we sort of navigated all that for the last 13 years.

(02:51):

And it hasn't been easy, let me tell you. It's been a real challenge sometimes. But the three funding sources I'm going to cover today are Social Security, SSI or SSD. I am going to talk a little bit about waivers. There are multiple waivers, and even though Medicaid may get cut, you may qualify for a different waiver depending upon what your situation is. Lemme talk about ABLE accounts and some of the considerations and even what enable account is if you don't know that. So let's talk about Social Security or SSI supplemental security income. So to begin the application process, you can call social security their number on the web. I believe it's 800-772-1213 at least that used to work. But by the time you see this, it's possible it's changed, or you can just go to www.ssa(socialsecurityadministration).gov So www.ssa.gov. And to start the process, you're going to need your child's birth certificate.

(03:51):

You're going to need the social security numbers for you and your child, and you're going to need to provide household income and resource information, bank statements, what proof you might have of living arrangements, household expenses, all that kind of stuff. Now, there are some limits on whether or not you're even eligible for SSI. If you make too much money, there are some alternatives. You can put all your assets, your son's assets, or your daughter's assets into a special needs trust, and then they can still receive social security income from the government. That's a little bit more complicated. I'm not going to cover that today, but if you have a question about that, if you're interested in that, again, shoot me a note and I'll be sure and cover that on a future episode. But if you do qualify, you're going to get some income right off the bat, and that's certainly going to be helpful if waivers and Medicaid does get cut.

(04:49):

You also might be able to qualify for SSDI, which is Social Security Disability Insurance. If your kiddo, your a severely autistic child is 18 or older, and there's a variety of criteria that apply, but this is money that we think is going to continue to be available. It's not as much money necessarily as you might get off of a waiver, but it is certainly worth taking a look at. So let's talk about waivers. The two big ones, at least in our space, are HCS, which stands for Home and Community-Based Services and Class, which stands for Community Living Assistance in Support Services. Now, there are other waivers besides these, and depending upon the nature of your disability, you may qualify for one of these other waivers. Yes, the Youth Empowerment Services Waiver for children that are three to 18 with psychiatric needs, that's capped at about $36,000 annually, but it's $36,000 annually if you have a child that falls into that category.

(05:52):

Again, that's yes, youth Empowerment Services in Texas, there's something called the Texas Home Living Waiver, the T-X-H-M-L for people of all ages that have intellectual or development disabilities, that's capped at $17,000 a year, but again, it's $17,000 a year. If your child is deaf or blind, then you have the DBMD Deaf Blind with Multiple Disabilities Waiver, autistic, deaf blind for children or adults who have all kinds of challenges. And you can just imagine how tough it might be to have a deaf child, blind child, autistic child that's capped at about $115,000 annually. Then there's also the STAR Kids, MDCP and the Star plus waiver. The MDCP stands for the Medically Dependent Children Program Waiver, and that's for medically fragile children under 21. At the risk of being placed in a nursing facility, most of the strategy behind all these waivers is to give you money so you don't have to institutionalize your kiddo, right?

(06:58):

So they don't have to move away from you, from your family, from your home, and get stuck in a big government institution, which historically has not produced anything close to being a desirable place for your child to grow up and live. The star plus waivers for the adults over 21. So you have star kids and you have star plus plus waivers for the adults, again, trying to get them to remain in the community. Lemme go back to class, which I mentioned in most states, the waiting list for class is shorter than HCS, it has similar benefits and provides a similar set of services. There are some differences. The big deal difference is you might be able to get class money sooner, but it's capped at a lower level. I think the cap, according to most recent research I've done is about $115,000 on class as well.

(07:50):

Whereas with HCS, it's over $300,000 depending upon the disability and how severe those disabilities are for your son or daughter. The strategy that a lot of folks follow in this space is if you aren't already getting waiver money, getting a Medicaid waiver, you file for as many as you qualify for. So we have a lot of couples we know with kiddos that have filed for both HCS and class waivers in Texas. Unfortunately, the list is ridiculous. And for HCS it's over 20 years long, which means when your child age is out of the system at 22, you hopefully got them on when they were two years old, which is ridiculous. But that's, anyway, where we're at class though, you may not have to stay on that list quite as long. So a lot of folks will get on both waivers when they qualify for class.

(08:41):

They'll start taking it when their number finally comes up. For HCS, you can only get one waiver at a time. They'll drop the class and they'll switch over to HCS, and that often provides more support and is a better deal. Now, we don't know yet what these Medicaid cuts are going to do, but the reason I bring this up is if you're not on a waiver, you still should try to get on the list. If you are on a waiver, especially on the ones I mentioned earlier, which are capped at a much lower level, you want to go ahead and get on that list for the HCS and the class waivers can take years, at least in Texas and many other states for your number to come up. And even though there are going to be some changes and some cuts, the best experts that we've talked to seem to think that that money is still going to be out there in some form, and it may be lowered, but it's going to be probably more than you're currently getting if you're one of those other alternative waiver programs that I talked about.

(09:38):

Again, the alternative waiver programs were the, yes, the Youth Empowerment Services Waiver, the Texas HML, the Texas Home Living Waiver, the DBMD waiver, the Deaf Blind with Multiple Disabilities Waiver, although that one's pretty darn good, that's $115,000. The Star Kids, MDCP, medically Dependent Children Program, and then the Star plus for the adults. Now, the last thing I want to mention is the ABLE account, and this has absolutely nothing to do with your income, although you have to make enough money to put it into the ABLE account, but it has some pretty interesting advantages and some characteristics I at least want to mention to you. You can save up to a hundred thousand dollars for your severely autistic child, assuming they were diagnosed before the age of 26, and that I think is going to be changing to 46 and next year. So the minimum age is going to hopefully go up unless they monkey with that in Congress, which we don't know yet about.

(10:37):

But anyway, let's assume for purposes of this discussion that your child was diagnosed before the age of 26, and so they're eligible and it doesn't affect your use of an ABLE account, doesn't affect their eligibility for Social Security or for Medicaid. So it's sort of like something else you can set up. Now it's your money you put in there. It's not like someone else is going to give you money to put into that ABLE account. You've got to put your own money, your own hard earned money. Yes, your own hard earned money into this account, but it offers some benefits. You can put up to $19,000 a year into this account. And if your child is higher functioning, if your adult child is higher functioning, they can also deposit some of their earnings too. There's some limitations, but basically they're going to deposit some of their own money.

(11:21):

And even if you have a special needs trust able accounts still offer some pretty cool advantages. So here they are. So number one, your money's going to grow tax free. That's pretty cool. Don't not pay any taxes on it as long as it stays in that able account. Withdrawals from the account for qualified disability expenses are also tax free. That's a bit unique right now. What's a qualified disability expense? So that includes things like education, like healthcare, transportation, housing, and a lot of stuff that falls under the personal support category. Also, these funds are more accessible for day-to-day expenses than some other alternative. So if you have a special needs trust, you have to go through the trustee to get money with an ABLE account. That's not the case. You can just pull money out of there as you need to, and they're less restrictive than some of those special needs trust as well.

(12:15):

So if you don't have a trust, enable account still makes sense. Setting up if you do have a special needs trust, it still is worth thinking about. But here's the main disadvantage, and most of us don't care about this because we're not thinking about this yet, but as your kiddo grows older, the main disadvantage is that if you have money left in your ABLE account and your child passes away, and unfortunately in our nonprofit recently, we just had one of the favorite community members who was 44 years old, pass away unexpectedly. I don't know if his parents had an ABLE account, had they had an Naval account and there was still money in it, the government might come in and say, well, we're going to use that money that's left to reimburse the government for some of the Medicaid dollars, the waiver dollars that we'd already paid to you.

(13:00):

So that's something to be aware of. Special needs trust can protect you from that, but that's I think probably the biggest disadvantage of that able account. So to conclude, and I know I haven't covered a lot of the details, I've sort of given you a very high level overview, but if you have questions, please shoot me an email. Again, it's mike@autismlabs.com and I'll try to get an answer back to you. I'm very interested in taking some of the things that we've learned that my wife has learned in sharing it with those folks that just don't know how to do it, because it's complicated and it does vary state by state to a certain extent, but I think we can get you head in the right direction. But I want to leave you with this. This is from Winston Churchill, and it's a quote that I really, really love, and I think it's one that certainly applies to all of us in the special needs space. Never, never give up. And as long as you remember that in spite of all the government bureaucracy and all the forms and everything else, and the impending, hopefully not, but probably impending cuts in Medicaid, there's always usually a way through that, right? There's often, if you're tenacious enough, persistent enough, you never, never give up. You'll find some money hidden underneath the stone somewhere. Hope you have a great week. See you.