What Happens After Your Child Ages Out? Two Dads Share Truth with Jon Hockenyos

What happens after autism services end?

In this powerful Autism Labs episode, Mike Carr sits down with Jon Hockenyos economist, policy expert and father of a 23-year-old son with profound autism for a candid, dad-to-dad conversation about life after the school system.

Together, they explore the reality families face when structured support disappears. From early experiences of being removed from programs due to behavior, to navigating a broken adult services system with decades-long waitlists, this episode highlights the critical gaps in care for profoundly autistic adults.

Jon shares insights from both a personal and professional lens, including his work on insurance mandates and public policy. The conversation also dives into the financial burden of lifelong care, the inefficiencies of current funding systems and why many families are forced to create their own solutions.

Mike and Jon discuss how they came together to build a residential model focused on community, familiarity and intentional support giving their sons the opportunity to gradually transition toward independence in a safe and trusted environment.

Key Topics Covered:

• The “autism cliff” after age 18-22
• Why behavior limits access to services
• Medicaid waiver waitlists and funding challenges
• The true cost of lifelong autism care
• Preparing for residential living
• Building community-based solutions for adults

This episode is essential listening for parents, caregivers and professionals seeking honest insight into the future of autism care.

#Autism #ProfoundAutism #AutismPodcast #AutismAdults #AutismSupport #SpecialNeedsParenting #DisabilityServices #Caregiving #AutismTransition #AdultAutism

Transcript

Mike Carr (00:05):

So welcome back everyone to another episode of Autism Labs. And today we're going to have sort of a dad to dad conversation, talking to two dads who've got two sons, both of whom are profoundly autistic. And we've both been on this journey independently really of one another up until fairly recently. Our son is much older than Jon's, but both of our sons have aged out of the school system. And so that's part of the excitement that parents go through. And to be truly transparent, Jon and his wife and Kay and I have purchased a house together where we're starting to provide more residential services, if you will, so that both of our boys can get together and spend nights together during the day, get used to living away from home. And that's staffed by our nonprofit that we've started here in Austin, Texas called john13.org, which I've talked about before on other episodes.

(00:58):

But anyway, let's get into this episode. So Jon, why don't you introduce yourself and tell us anything you want to about who you are.

Jon Hockenyos (01:04):

So I'm Jon Hockenyos. Thanks, Mike. And I am an autism dad. My son, Sam, is 23. So he's a little bit younger than Michael, Mike's son. And my professional background is, and I'm an economist by training. I've been running a consulting firm kind of doing public policy work and economic analysis. It's getting on, it's almost 40 years, which is kind of hard to believe. So my wife, Rebecca, and I have been swimming around, not only in the waters of being parents of a child with profound autism, but also doing policy related work, trying to support that community. And in particular, we've done quite a bit of work in and around insurance mandates at the state level for treatments for autism. We've helped found two or three different organizations associated with, again, providing services and ultimately community to folks with autism. And we're like everybody else.

(01:56):

I mean, we were focused on stuff for young kids. When our kid was young, we were so focused on school age things when our kid was school age. Now that Sam's an adult, we're focused on what happens after you leave the school system, after you leave kind of the formal structure, at least to some degree that provides. And where do we go from here? And we'll talk more about this, but J13 is a response, I think, to what we, as the parents of young adults who are profoundly autistic, are discovering is a massive hole in what's available and it's our response to it. So like you said, Mike, it's a journey, right? It's a journey that kind of tracks the journey of our children's lives.

Mike Carr (02:35):

And

Jon Hockenyos (02:36):

It's one that at the end of the day, you look around and you say, who's coming to solve the problem? And the answer is not really anybody. So it kind of falls to us to do that.

Mike Carr (02:45):

Yeah. I think one of the initiatives that's so cool that you mentioned is addressing some of the affordability issues, right? That trying to take a action through legislator actions or whatever it might be, that this is not an inexpensive journey for any parents that haven't gone on it yet. No. And the amount of money that's required when you think about lifelong care for your autistic son or daughter who's profoundly or severely autistic and may require one-on-one care or close to one-on-one care is millions of dollars. And so anything that any of us can do in talking to legislators that we know affecting changes in insurance policy is certainly welcoming. Jon, thank you very much for you and Rebecca for all your actions in that space. But let's get into the personal journey a little bit because I think that's what a lot of parents that are watching this might be interested in, especially if they've got a younger child.

(03:34):

Was there a moment when someone told you they couldn't keep Sam in their program or they couldn't work with him any longer? I mean, is there anything like that that comes to mind?

Jon Hockenyos (03:43):

There were a couple moments actually when Sam was young. I mean, one of the things that I remember being told, our older son had lots of physical challenges when he was born. And so when Sam arrived, he's our second son, and he was perfect and everything was great. And it was all doctor tells me, "Gosh, he's one of the strongest little guys we've ever seen. 18 months old, I could throw him a ball, he could catch it and throw it right back to me." And then all of a sudden, within short time after that, I would throw him a ball and it would hit him in the face. And so he clearly had regressive autism. He was at a special needs preschool at one point. And we got a call from the teacher saying, "You got to come get him." And we had to come get him because of behavior.

(04:24):

And what we've learned on this journey over, and that has happened episodically in other contexts he's been in. Typically, it's associated with, in his case, OCDs that are either stifled or denied or whatever. But it all tracks back to his bad behavior is associated with something going on with him physically, because I would characterize an OCD as a physical situation. So yeah, I mean, at a very young age, we learned that Sam was on the spectrum and we learned that he was pretty profoundly on the spectrum. And literally at a preschool for kids with special needs, we got the phone call saying, "You got to get this guy out of here." Because the dirty little secret is behavior trumps everything in the vast majority of organizations. They will work with anybody as long as they don't have behavior. But when behavior rears its ugly head, that's when the game changes.

(05:14):

I

Mike Carr (05:14):

Think that's something that anyone that has a severely autistic child is probably used to. The extent and frequency and severity of that behavior is of course different across the board. And it made me different based upon age. Sons grow up where they go through puberty or whether they have a change in their environment and they can't talk necessarily or have very limited verbal capabilities. They're anxious or something causes concern on their part or they don't understand what's fixing to happen or why they're going somewhere. And that inability to communicate is really tough. And part of the problem we had, because we went through the same journey, we got kicked out of a large school district in a large city in Texas and moved to a much smaller community that had a better program, was the lack of willingness of the staff to investigate the reason, the antecedent for the behavior.

(06:07):

It just doesn't come out of the blue. There's something going on there. They might have an upset tummy. There might be something going on in the gut. There might be something they can't communicate or their iPad was taken away from them or someone was mean to them yesterday or they didn't get a very good night's sleep. So trying to identify that is really tough. And it maybe even becomes tougher when they finally age out of school. And so I'd like you to talk to the audience about what changed when Sam did age out of school for you guys.

Jon Hockenyos (06:35):

Well, it's an interesting question, Mike, because the truth is Sam was only in public school for a very short period of time because we had recognized at a very young age that it wasn't going to be a very good fit. I mean, public schools are designed to sort of deal with people one standard deviation one way or the other from the mean. And our guys just don't really fit that profile. And this is no disrespect to the public school system, but we were pretty certain it wasn't a great fit. So for us, what was really the cliff was because of some of the work we had been able to do that we kind of referenced earlier around insurance mandates. There's a group here in Austin, the Central Texas Autism Center, became in a lot of ways, Sam's daily activity. And that went on for most of his childhood and on into his adolescence where he could get the kind of services and supports he needed.

(07:27):

And so when that came to an end and it did come to an end, we looked at each other and said, "Now what? What do we do?" And I think that's right. Thank God, that's right about the time that we met you guys. We met J13

(07:39):

And realized this is the path forward.Because I'll be honest with you, Mike, if we hadn't found J13, we'd have had to invent something and we wouldn't have done it anywhere near as well as J13 has done it. But that's the thing is that there is no path for people leaving whatever that structure is. In our case, it was kind of therapy associated with a therapy center, the public schools, whatever it is. You hit adulthood and it's over. There's nothing, particularly for people with profound autism. And so here we are out in the wild trying to figure out what we can do.

Mike Carr (08:14):

Right. And I had an episode last week where I talked about residential programs around the country, not just in Austin, but elsewhere in Texas and using AI and some of the things AI found, but a lot that it missed. And one of the things that I know parents that are listening to this maybe have not experienced yet, or maybe you have, is you have to go visit these places. You may be able to turn up what employees are saying or staff is saying about where they work. You may turn up where a regulatory body has issued a warning or refused to approve a program. Some programs have been around for decades because the staffing isn't what they claimed it was. But man, when you go on site, especially on the off hours, a weekend or a holiday, and you walk around and you take a look at what's this group home really like?

(08:58):

What are the guys and gals really doing? And you see, it's not much more than glorified babysitting at its best. It's of real concern about, do I want my son or daughter to live there? Are they going to have a joyful life? And then of course, it also comes down to funding. And this gets us into this whole waiver list thing. And I know you guys were on the waiver list for a while. We certainly were on the waiver list for a very long while. Is there anything that that experience taught you or that you would want to share with parents listening that funding, funding sources, ways to arrange your finances, what that journey was like you guys, for you guys in particular?

Jon Hockenyos (09:36):

Yeah, it taught me a lot. And so we had worked to fundamentally try to expand resources when we did the insurance mandate saying, look, treatments for autism have to be considered medical expenses for insurance purposes. Before that, under my health insurance policy, Sam was entitled to, I believe it was 40 sessions a year at $50 an hour worth of "mental health treatment." That's a little less than a week of ABA at the end of the

Mike Carr (10:01):

Day.

Jon Hockenyos (10:02):

So there was a huge, huge mismatch there. So that was somewhat helpful. We were on a waiver waiting list for over 20 years. We put Sam on when he was two. He was approved when he was between he was 22. So he's now 23. And it was always kind of in my head, kind of when we finally get there, oh my God, it's going to be so great because we used to say we sent Sam to Harvard every year because what we were spending out of pocket. And listen, I mean, we're blessed to be able to do it. There's no question about it. And I know that's a huge motivation for both of us because we are blessed. And there are so many families out there in a very similar situation who do not have those resources. But I'm waiting for the pot of gold at the end of the rainbow.

(10:43):

And then we get the word that we've been approved for HCS here in Texas, which is sort of the highest level. And I discover all the restrictions and all the convolution around all of it.

(10:57):

I mean, I'm just going to be honest, wildly inefficient it is. And now I'm both angry and motivated because there is definitely a better way to do this. And I have some pretty distinct thoughts on that. And I'm now, I'm not saying we're going to change the whole world, but I'm going to kill myself to try to get us an alternative path that doesn't involve this ridiculously sort of bureaucratic, inefficient, underfunded system that is warehousing is a. If you just have the people being warehoused, that's a win. I mean, there's no though under anything the state is doing about creating opportunities for people to live their best life. They're just literally just trying to figure out ways to warehouse people. It's awful. So we got to be clear-eyed about this. We got to understand what getting on a waiver means. We got to understand that probably for most people in our situation with an adult who is profoundly on the spectrum, it's not going to be the panacea we wish it would be.

(11:55):

And we as community members and as the loved ones of people in these situations have to really roll up our sleeves and work to improve not only the access to the resources, but how the resources can then be utilized. And that's part of our coming mission.

Mike Carr (12:11):

And we know this is probably different from state to state. And so both of us are in Texas. And so we're talking about Texas, but we've talked to other parents in other parts of the country and there are similar problems with a different set of rules and regulations. I think both of us feel that the boots on the ground, that is the social workers, the employees of the state that come into our houses, they have the right priorities, but they're sort of shackled and hindered by all the paperwork, all the bureaucracies. So we have a self-administered program and we get the money directly and then we go out and hire the support staff for Michael, which means we have to work on doing payroll and time sheets. And it's just a ridiculous load. And then we have so many hours a year for therapies, whether it's PT or speech or occupational therapy or who knows what.

(12:59):

And then so many respite hours. And I know, Jon, one of the things that you and I have talked about is it would be a whole lot more efficient if the state trusted parents and maybe even gave us some metrics. Here's a bucket of money. And it's less money perhaps that you would get the old way, but we're going to rely upon you to spend that money the way you want to, to deliver an outcome for your child and all the things that are unique about your child that only you know that creates the kind of environment in the life that you want them to lead. And it would remove so many of the restrictions and the hindrances that keep the social workers and the people that come in. And we're not saying that goes away, but unshackle them. They're trained. Many of them have master's, advanced degrees in these programs.

(13:44):

And together we think we could come up with a much better solution. So we're both interested in this. We're both going to be working on that moving forward. But I wanted to shift gears a little bit and go back to under the current rules and regs. We have to private pay a lot of this stuff. And certainly we both have tried to get our kids ready for residential by not just dropping them cold into a new environment where all of a sudden they're living away from home most of the time to through John 13, through J13, spending a night or two away at first. And the first night that this happened for Sam or the first night that this happened for Michael, what did you guys talk about? What were your worries? How much comfort was there? Share with parents a little bit about getting ready for getting your son or daughter who's typically lived with you for their entire lives.

(14:31):

Maybe you've taken them on visits or maybe they've spent time with relatives, but other than extended family, they maybe aren't that used to living away from home. How did you guys navigate that? And were there any learnings there that you think would be valuable for other parents to be aware of?

Jon Hockenyos (14:43):

Yeah, I think there's a lot actually. So I think that first of all, Sam's first night away from home was a 10 out of 10. We did not expect that, but we were hopeful that it would go well. And the reason why we were hopeful was because we had already begun to realize, in fact, Mike, that's why you and I talked about doing this. Part of the special sauce was he was going to be with people who knew him well and who he knew well.

Mike Carr (15:07):

You bet.

Jon Hockenyos (15:08):

And for everybody, that is one of the foundational elements of J13 that I think is so important is that our community members know each other and know the people who are caregiving with them intimately. There's this really strong connection. And that really sets people up for success. It doesn't mean that there won't be problems along the way, but I say all the time, our guys need a long runway. And so even by the time, it was February, if I remember right, two Februarys ago, when Sam went over to spend that first night at the respite house, he was connected to not only the caregivers, but some of the other community members, certainly connected to the J13 leadership. And so that very first night, we didn't get a call. Nothing. It was all great. Ever since then, I haven't quite tallied it up, Mike, but I'm going to say Sam's probably spent 40 nights over there, give or take.

(15:59):

Macimanos, as we say down here, not one call. He's in fact over there right now. We didn't talk to him from Monday afternoon until last night. When we talked to him last night, he was joking around. He's having a great

Mike Carr (16:12):

Time.

Jon Hockenyos (16:13):

And that's one of the things that's emerged, and we'll talk more about this. He's always had kind of this latent sense of humor. Well, now it's not late. Now it's front and center. I mean, it's autism humor, but it's his humor. And he gets on the phone with Beck and I, and all he wants to do is tell jokes. That's a great

Mike Carr (16:28):

Time. Jon, you mentioned, and then anyone listening probably picks up on is that this is a very intentional, very mindful process. It's not random. It's not based upon luck or chance. There's always a certain amount of that. But Jon and I are both on the advisory board of J13. As you guys know, we're both parents and another advisory board members are also parents of either profoundly autistic kiddos or maybe children or adults that don't have an autism diagnosis as their primary diagnosis, but they have a lot of similar problems. They might have behavior, they might have down syndrome coupled with lack of communication skills or some other IDD that sort of puts them into this higher support camp. And they're all unique. Every one of them is so different. And so to have the staff spend enough time with them through a day program, which is what Jon and I have done with our sons.

(17:20):

So they really do get to know them and they understand what sets them off. They also understand just the visible signs that they're getting upset or something's amiss and how to intervene and calm them down and what works. That is just hugely important. It sets the whole path up for success. It sets that first night away from them to be a much more likely success night. And Jon, I know you guys took at least a week off and we've taken at least a week off to go on vacations out of the country and not really worry too much about our kids.

Jon Hockenyos (17:52):

Nope. No. It's a testament to how intentional J13 has been. And I think there are two elements to that. One is, of course, the leadership of J13, including you, sir, and Hayden as well, and Kay and Johnna and everybody has created a culture where people who work at J13 see this as a calling. And if you see it as a calling and you create an environment where people who feel that sense of mission want to be part of this, and then you take the time and the space and the energy to not only work with all of the community members as individuals, but really invest in all the staff members and their training and their ability, you create this incredible synergy that goes on. And it is unique. I have never seen it anywhere else work quite like this. And it's because this is truly in the sense of this broader community of us, for us and by us.

(18:43):

It's everybody involved in this equation is deeply personally invested in how it turns out. And that's the best of all worlds. So my son now is not merely satisfied to be there. He's happy to be there. And so he's in the process of becoming the best version of himself, which is that's a whole nother level beyond. And we can talk if you want to about some specific things he's learned of being part of this community, but that's the dream.

Mike Carr (19:09):

Hi guys. I just want to stop the episode at this point with Jon. I'll let you know that we're going to go ahead and continue next week. I think you sort of get a gist of the wisdom and Jon's bringing to the table having lived this journey and how his son, who's 23, just recently aged out of the school system, whereas ours is 36, is much older. So we've been sort of removed from that process. So next week we'll continue the conversation with Jon and all the things that he's learned as another dad of a profoundly autistic son. Until then, take care of yourself and of course take care of your autistic son and daughter too.