Finding Autism Residential Care: Tips For Parents & Families

Mike Carr and Joel Wood discuss building residential and support options for adults with profound autism, saying staffing - motivated, caring people over credentials- is the biggest challenge. They recommend partnering with universities, using visual communication and careful observation (behavior is communication), starting small with day programs or informal gatherings, and having clear plans for leadership, ownership, funding, and staffing. Tech and AI can help with research, training, and spotting stress, but can’t replace human connection; their final advice to parents is: be persistent, work with systems (not against them), and keep moving forward.

Chapters

• 0:04 Welcome & Recap
• 0:49 University Partnerships for Staffing
• 1:31 Communication Tools & Speech Therapy
• 2:20 Observing Behavior & Staff Fit
• 5:46 Ownership, Funding & Administration
• 6:58 Start Small & Build Relationships
• 11:18 Technology & AI in Care
• 13:30 Persistence & Parent Advocacy

Transcript

Mike Carr (00:04):

Well, welcome back this week as we continue our conversation with Joel Wood about residential programs and the journey that he and his wife have been on couples in the Nashville area. Hope you enjoy it. And if you miss the first episode, switch back to last week and listen to that first so that it'll make sense as we continue our conversation. One of the things that we lucked out on, I don't know if we lucked out on it as much as we just sort of ran out of other options. It's how do you find folks that will do a great job and they're not getting paid a competitive wage if they're out in a professional career? And so we were able to tap into the University of Texas. We actually moved from about an hour outside of Austin to close to UT. And the special ed department there put together a program with us with a speech department and the nursing department.

(00:49):

So we had three different university departments all working together, giving their students credit. So these were typically graduate level students. So they'd already gone through their undergrads, a little bit more mature, and they were a little bit more committed to working with the population. They sort of knew what they were getting into. The biggest surprise, which we found is one of the reasons you have such high turnover that folks think they can work with this, especially volunteers, church volunteers, "Oh yeah, I want to do this. " And they very quickly learned, "Oh, I'm not cut out for this. I didn't know this. " It's messy. Yeah, it's kind of messy. But if students are getting course credit and they're working together and they already have training, the courses that they're taking is about behavior, it's about collecting data, it's about improving speech, even if they're nonverbal.

(01:31):

Well, our son still has speech therapy twice a week. He's never going to talk, but the speech therapy helps him communicate in his case with an iPad that's using visual icons that does talk. His receptive language, and it sounds like this is the case for William, it's what they understand. He understands a lot. He understands everything. Yes. The fact that he can't articulate that, he can't express that verbally is the challenge. But he's able to express things with his iPad through visual icons or in William's case, it sounds like he dispels the words out. That's pretty cool, right? But getting students involved where there's course credit and the professors are sort of monitoring the program, that is an inexpensive way to get some staff that is somewhat trained, not necessarily trained about the particulars with your son or daughter, but at least they've had some educational background, maybe an internship or two already.

(02:20):

The fact that they turn over every couple semesters, we were really worried about. We thought, well, we're going to go through all this effort and Michael's going to be really excited to see these folks, these students come in and now they've gone. But just the opposite has happened. He really looks forward to new members of the team. As soon as the new member shows up, in his case, especially if it's a cute gal, he gets rid of everybody else. He shoves everybody else out of the room and he goes over and he holds her hand and he'll do whatever she wants because he thinks this is pretty fun. So I don't know what William's like in that environment or if you've even explored any universities that may be close to something that you guys were considering in Nashville, but I'd be interested in your thoughts on that.

Joel Wood (02:54):

No, I think that's a wonderful approach. And we have thought through that. Vanderbilt, for instance, is a major research institution that's here. They've been active in this environment and in this realm for a long, long time, and they have a program where they actually have some community built where people live and work with the folks that live with the folks that you're talking about who are pursuing this, getting into this profession and getting into this realm. So I think the real key, whether it's a student or it's somebody who's just looking for some extra work, and this is where our son really excels, is having the intuition about what's this person's true motivation.

(03:28):

They

(03:28):

Really want to dig in and help me and get to know me, and are they really interested in engaging me and learning about how to communicate with me and take care of me? Or are they just showing up to be a warm body? He's got a real sense for whether that person is someone who he wants to hang around with or not. And that's pretty cool. A young woman here in the last two weeks has moved here from New York City. She's a writer. She's a musician. She's autistic herself, very high functioning, and so she has a real care for this population. And so finding someone who's got that kind of desire is really ... because they're doing it because they want to, not because of the paycheck. The paycheck is not ever going to satisfy or be

Mike Carr (04:11):

Enough. We've gone through, and we've been on this journey for 33 years. Our son's 35 years old now, and so we've gone through hundreds of people over the course of decades. And you get smarter. I think you get smarter as parents as to what to look for and the questions to ask about, have they been associated? Do they have a sibling or they have a nephew or someone that they were exposed to growing up? And it sort of created that warmth in their heart and that desire to help out and they have a familiarity with some of the challenges. But you're often surprised, right? And I think listening to your son or daughter, and I say listening in quotes, observing their behavior. Michael would get very anxious and agitated and he couldn't really say why, but we learned pretty quickly, well, he didn't have a good day.

(04:58):

And sometimes that was because the colleague was off texting on the phone and ignoring him or not taking him out on a walk because the weather wasn't quite as nice and so he wasn't getting the exercise that he needed. And so the more folks you go through, the smarter you get at that. But hopefully if you're smart upfront and you think about those things and you do listen or watch and observe your son or daughter and how they react to an individual, you don't have to go down that path very long. You can still discover that before you make a permanent hire or you bring somebody in and spend a lot of time training them. Let me switch gears just for a second because I know there are a bunch of other things that we can talk about. I've got some other topics, but Joel, just based upon other things that you've thought about, what else would you like to share with viewers and listeners that you think, "Hey, these are some other questions you guys should have on your cheat sheet moving forward."

Joel Wood (05:46):

Yeah, I mean, I think we've covered a lot of it. I think one other thing that I would sort of point out is if you do pursue your own strategy, and let's just say you partner up with a couple of other couples, leadership who leads that, how do you administer the program? How do you make sure you have shared values? I think that's a huge part of it is if you get sort of in business with some other families, and I think you've probably become aware of some of this or acknowledged it in some of your podcasts, how do you sort of administer that part of it, like ownership. You get to the point where you get a residential facility, who owns it? How do you deal with that? Listen to or got a part of a podcast or a webinar recently about some folks in Northern California where they have a couple of houses that they're basically the landlords and they're renting it out to special needs people who have caregivers.

(06:34):

And I think they've got it solved, but the ownership part of it is really, really challenging. The funding obviously is always huge. The staffing, again, as we've talked about a little bit, those are really the three main parts of if you do create your own program, who's going to lead it, who's going to own it, who's going to fund it, how are you going to fund it and who's going to staff it?

Mike Carr (06:55):

Yeah.

Joel Wood (06:55):

Those are the big things that you have to solve before you're going to make

Mike Carr (06:58):

Something work. And you said something a little while ago that I think is so important. Don't put the cart before the horse. I mean, you really need to start with something that's a simpler lift so you get to know these parents. So we went down the wrong path. We thought, oh, we're going to start with the residential. We even bought a lot near university and we're talking to a builder and we had no program, we had no relationships with any parents, and that is the worst possible place to start. What we've learned from the day program and the summer camps, which is pretty easy, is you get to know the kids, the staff gets to know the students, the colleagues, the adults, and you get to know the parents. And some parents really want to be doers and volunteers, and that's great. Other parents are much more interested in just hands-off.

(07:38):

They can provide some financial support and having the right mix. And you need a different set of skills, especially when you start thinking about full-time residential. It'd be ideal to have somebody on your board or in your community that's a lawyer that understands the law and that can help you from a legal standpoint because those fees can get to be real expensive. Somebody that's a builder or a developer that sort of understands the real estate side. We have one guy on our advisory board that does a lot of work with municipalities and builders in and around Austin. And so he's very well connected and is currently looking at securing some land that we then can build a capital campaign around to raise money for a longer term vision where there would be homes and hopefully some type of facility that they could work at, but also close enough to Austin so they could get out off campus

Joel Wood (08:22):

Yeah

Mike Carr (08:22):

Into the community. And those are all things that sort of can evolve organically, but being very intentional upfront and very mindful, I think of how do we suss out which parents work well together. One of the things we discovered, I mean, we started as a very Christian-based organization. I mean, our name is John 13 after the Bible verse where Jesus is watching the feet of the disciples,

(08:44):

But we have some Jewish families that from a God-centered, moral-centered respect and dignity are amazing. And so I don't think it's so much focused on just what religious belief do you have as much as are these parents and families who put their child first and have all the love and desire to help them and are really willing to work with other parents of the same mindset regardless of their religious persuasion. And that's served us very well so far and hopefully it'll serve us well down the road. Where are you guys in the process? I mean, I'd be very interested in you just sharing, "Hey, we've looked at a lot of these programs. Our next steps are going to be one, two, and three."

Joel Wood (09:27):

Yep. So I think it would be interesting just as an example of how we're sort of really starting small is my wife has hosted a Bible study three or four times at our house for four guys to come over with their parents and it's been pretty easy. She's asked AI or ask ChapGPT to create a Bible study on Jonah, here's a summary and here's five questions we can ask and they can spell the answers. And so we've done that I think three or four times. She's going to have another Bible study this Saturday, but that's been really helpful to learn. Okay, so they're not all going to sit at the table, right? Right. They're going to get up and they're going to wander around and they can still hear the questions and someone may be two rooms over, but they know what the question is and they can answer on the letterboard and we can all get back together and talk about the answers.

(10:17):

But just kind of learning what does this look like? This is not a classroom. This is not going to be a classroom kind of

(10:24):

Thing.

(10:24):

It's really going to look like in practice.

(10:27):

And whose parents are going to get involved and sort of dig in and who's going to stand by the side and kind of watch to your point. I think it's almost like building a business, right? If you think back to the dotcom era, maybe people are old enough to remember the 992000.com era where people created these business plans out of vapor. There was no essence to it. There was no real business model. It was just, we're going to get eyeballs or whatever it was. This is the same thing. You've got to create something that works, that actually happens day to day, that works. It's not just dream this and think about this. It's designing something that really works. And so I don't know that we have next steps, one, two, three, Mike, at least if we're going to create something for these three boys that we have in this group, we're starting small and just kind of iterating and trying to figure that out.

Mike Carr (11:18):

Maybe one last thing to talk about. I personally love technology. I mean, Kay and I, we're both computer programmers out of college. And you mentioned AI earlier and I think there's concern now about, well, my kids can't get a job when they graduate because AI has taken a lot of these entry level positions. AI will never take the positions that we're talking about.

Joel Wood (11:38):

No.

Mike Carr (11:38):

AI can help, right? I mean, we're looking at multimodal devices where you have some kind of wearables. Let's say it's a wrist watch and it's got some software on there so it can sense when the heart rate goes up or perspiration goes up or the breathing shallow and maybe that's a precursor to a meltdown or behavior. So a staff member can get an alert on their smartphone and remove the individual or go over and see what's going on. Michael, are you okay? William, are you okay? And then multimodal, Meta's got some glasses they're coming out with now that are a lot less expensive to have a camera and audio recording. Not that everyone's going to wear their glasses, but if you can integrate in video and audio to where over time you actually can then use AI to parse out over the course of a day, what biometrics corresponded to a spike in heart rate?

(12:22):

Now let's back up the video and the audio and let's listen to what William was seeing and listening to, or Michael was seeing and listening to. Was it a joyous fun thing or was it something that was causing stress that maybe the staff missed? And so we're not there yet, but we're close to getting to the point where you can use AI to help train the staff and be more aware of the environment and events that are positive or that are negative triggers. And we use AI right now for research. I think everyone that's in this space finds probably AI the most valuable in sussing out what's out there, who's doing what. You have some recommendations on how to proceed or put together a plan, but have you guys invested in any technology? Have you looked at any other technology? Have you used AI in any other ways that you think parents should be aware of?

Joel Wood (13:05):

No, I mean, I'm sad to say we really haven't. I think we're probably, like a lot of other people, we just sort of go on ChatGPT and ask specific questions, but we really haven't explored that. I think my wife has done an incredible job of networking and getting on podcasts and being on the right groups. And so we're getting a lot of inputs from a lot of other families and different sources, media sources, but we really haven't used AI to any great extent.

Mike Carr (13:30):

If you had to leave the viewers and listeners with just advice like they can't do anything else at this point, and part of this depends on where they are on the journey. So I know this is a hard question to answer, but just based upon what you guys have discovered and what you've learned, for any parent listening, what is probably the most important one thing, single thing, or maybe two or three things that you'd recommend, "Hey, don't forget to do this. " Or one of the things that we just found invaluable was something else. Does anything like that come to mind, Joel?

Joel Wood (13:59):

I think regardless of what realm you're talking about, whether it's the school system, whether it's dealing with an outside ABA firm, whether it's dealing with SSI and the Social Security Administration, just never giving up, being persistent. It takes a ton of energy. I've fought with the Social Security Administration for 18 months to get my son SSI at the full rate. It's possible, but sometimes have to wade through a lot of stuff to get there. Just be persistent, don't give up. This journey is tough and it's exhausting and it sometimes can drive you to do some crazy things, but just don't give up. Be persistent. That's the word I would leave you with. And that's the approach we're trying to take to this particular challenge we have in front of us. Let's see what all the options are and maybe we do have to create something for our son and a couple other guys and that's going to be hard, but that may be what we have to do, not exist in this particular part of the world.

Mike Carr (14:59):

Yeah. And regardless where you're located, I think being tenacious and persistent and not giving up is an important skillset. And one of the things that I learned personally is Kay and I were both fairly persistent, but the way we were persistent was very different. I tended to be much more of a hard-nosed, "Hey, I deserve this. I want this. " And I was a little bit abrasive and probably too adversarial. Kay would go in and more of, "How can I help make this happen?" So like for our school district at the time, they weren't very tech savvy. And so she actually went to Region 13, which is in central Texas, sort of the support center for all the public school districts. And she met with them and she was the one that sort of reviewed all the tech devices, all the communication devices. This was before an iPad even existed

(15:42):

And figured out which ones would work. She even wrote code for some of them. And so she helped the school district itself serve other people like our son in trying to figure out, well, which of these devices were going to work the best, were the most durable and had the greatest flexibility and what software was out there. And so having more of that, "Hey, let's work together to solve a problem that's going to make your life easier and also serve my son or daughter." And so that softer touch approach for her, I think worked a whole lot better for our son than my hard-nosed approach. Now, sometimes you got to be hard-nosed, but I don't think should ever be what you lead with. And I don't know if you have any experience or suggestions along those lines or

Joel Wood (16:22):

Not. Oh yeah. You're right. I think your wife's approach is the correct one. Working with people within the construct of what you're dealing with is the right approach, getting them, trying to motivate them through different means. I mean, you can write the most beautifully crafted IEP that ever existed that addresses all the needs that your son or daughter has, that has all the goals and objectives and the right measurements, right metrics to measure success or failure. But if that person who's inside the school who's working with your son or daughter is not going to do it, it just doesn't matter what the IEP says. I mean, ultimately it does because you can hold them accountable with that document. So it ultimately matters, but day-to-day, convincing someone to get them in the boat with you is more about what it's about.

Mike Carr (17:06):

Yup

Joel Wood (17:06):

They're going to do a lot more good that way than trying to hold them accountable with a document.

Mike Carr (17:11):

I agree. Somebody in the Nashville area is watching this or somebody in Tennessee that might even consider moving to Nashville, is watching this and would like to get in touch with you or would like to follow your guys' progress or journey, or I'm not sure this would happen, want to give you money, want to donate to your cause.

Joel Wood (17:28):

Yeah, that would be serious, wouldn't

Mike Carr (17:31):

It? Is there any place you would direct them to? Is there a LinkedIn page or is there a Facebook page? Is there anything you guys have set up for people that might want to know more about what you guys are up to?

Joel Wood (17:40):

I can certainly go to my LinkedIn page. That's probably a decent way to do this. I also have a Facebook page and just send me a message and get in touch that way. That's probably a good way to do it.

Mike Carr (17:48):

If they search on LinkedIn just for Joel Wood in Nashville, you're probably going to pop up, I guess.

Joel Wood (17:53):

Yeah, I'm going to pop up.

Mike Carr (17:54):

All right. Any closing comments? You've been great. I have nothing else I think to ask you. I think all the advice and stories you've shared have been wonderful. Is there any closing comment though that you'd like to make?

Joel Wood (18:04):

No, not really. Thank you for having me, Mike. I appreciate the time and hopefully I said something that'll help somebody somewhere.

Mike Carr (18:11):

Well, thank you, Joel, very much for your time. And for all of you guys that are viewing this or listening to this, we will put some of this information in our show notes and until next week, have a blessed and wonderful week. See y'all. Bye-bye.