Finding Safe Residential Care for Profound Autism (What We Learned)

Finding the Right Residential Program for Profound Autism: What Really Matters

After more than two decades of searching for the right residential environment for his profoundly autistic son, Mike Carr shares a deeply honest look at what families must consider when evaluating long-term care options.

In this episode, Mike explores the limits of AI-driven research after testing multiple platforms and receiving completely inconsistent recommendations. More importantly, he walks through real-life visits to autism residential programs, revealing critical red flags and powerful insights that don’t show up in online reviews.

From staff culture and safety concerns to dignity, engagement, and trust, this conversation offers a practical framework for parents, caregivers, and professionals navigating one of the most important decisions in autism care.

Key Topics Covered:
 • Why AI falls short in evaluating autism residential programs
 • Red flags: restraint practices, staff disengagement, lack of transparency
 • The importance of staff feedback and parent experiences
 • Why visiting multiple times (including off-hours) is essential
 • What truly defines quality care for profoundly autistic adults
 • How to prioritize dignity, safety, and meaningful engagement

This episode is a must-listen for families planning for the future of an autistic child, teen, or adult.

🎧 Watch the full podcast to Download the AI Prompt and Results: https://youtu.be/YzfzITK50vE?si=LoQoSNG8QFxLUbhz

Transcript

Mike Carr (00:06):

Welcome back this week to another episode of Autism Labs. I'm going to talk about finding an amazing residential option, residential program for our profoundly autistic child, or hopefully yours too. We've been looking for a while, for over 20 years. So I'm going to walk you through what we've learned to look for and how to look for it and what really matters and how to find it, which as surprising as it might be, is not just from AI. And we use AI all the time. It's helpful, but it can also be frustrating. So for example, yesterday I took three of the biggies, ChatGPT, Claude and Gemini, and I gave it exactly the same prompt. And I led them through the research the same exact way. And I'll share this prompt with you in the short show notes if you want to see exactly what I did.

(00:54):

And guess what happened? All three of them came up with radically different recommendations. Same prompt, same time, different recommendations. Claude found five programs in Texas and three programs elsewhere around the country that thinks or though we should take a look at. Okay. ChatGPT found eight in Texas and eight nationally. But it totally missed the top program according to Claude that we should take a look at, which was the autistic treatment center in Dallas and in San Antonio. Just missed it. And so then Gemini came along and I had to do a reputation and review analysis and it came back with five programs in Texas and six nationally. So I compared the five programs that Gemini came up with, with the five programs that Claude came up with. And you know what? None of them were the same, not one match. Gemini came up with five totally different programs within the state of Texas based upon the same prompt that we should take a look at versus what Claude came up with.

(01:53):

So this was a bit frustrating as I said. Now, I'll show you the reports. I'll put those in the show notes too in the link so you can actually take a look at what we found and what they recommended and all the different things. And there were some things in spite of those inconsistencies that were of value. Some insights that we had already sort of uncovered after doing this for 20 years on our own without AI. And I want to share these to you as these will probably help you a little bit too. So one of the things is what are employees, the staff saying about working there? Sometimes you can find these on Glassdoor, you can find these on other job sites, and you're looking for both the positive and the negative comments. And some of the things that ChatGPT and Gemini and Claude found were like allegations from the staff of the residents being mistreated or overuse of medication to zone somebody out that was a little bit more challenging or was having a bad day.

(02:43):

So you show up and your son or daughter is not acting themselves because they've been drugged up because they have a little bit of a problem behavior that day, not good. Or even leadership, staff talking about how leadership or management was asking them to cover up an incident about a resident leaving, eloping and not being known where they were for hours only to show back up. Had everybody in a panic, boy, leadership did not want that to get out. Or number two, licensing agencies, not approving a program that had been around for over 40 years, revoking the license. Not once, but twice. This is a well established program. I mean, not approving the program twice over a very short period of time. Number three, lack of accreditation from important agencies like just the Better Business Bureau. You would think a program that's been around for a while would at least have a BBB accreditation.

(03:36):

Or maybe, and this was hidden in the fine print, believe it or not, in some programs, a policy of being able to reject any resident for overly aggressive behavior and not sharing that openly during the recruitment process. Some employees were talking about parent complaints and how some of them were legit regarding overuse of physical restraining or a parent shows up and their bite marks on their kid's arm or back. Where did this come from? How come this wasn't reported? Or lack of consistency. They go to one house and it's clean and the house manager's excited and energized. Yet the house that their kiddo is living at, house manager's not quite on the ball, doesn't seem that interested in talking to the parents. Lack of consistency in the program and the KPIs, the key performance metrics from one house to another house. Number six, AI uncovered this.

(04:23):

I could not believe this is still going on. Skin shock devices to modify behavior. This is evidently a practice unbelievably that is still going on in some of these programs. Or a program that provides beautiful facilities, magnificent maintenance, gardens, brand new stuff. But guess whose responsibility is the staffing? Yours, the parent. Are you kidding me? Who cares if you've got this wonderful home, but who's going to take care of my profoundly autistic child or my child with complex developmental needs who can't talk who has pica behavior, who might have seizures, who can't dress himself, yet he lives in a great place? I just don't think that's going to work. Now on the positive side, AI did uncover a lot of things that you're probably looking for anyway.What's the room look like? Is it a private room? Does it have a shared bathroom or its own bathroom?

(05:06):

Is there strong clinical leadership? Do you have BCBAs on the staff? Are there RNs on the staff? Are there other credentials that you can see? AI surfaced a lot of this. And so looking at these reports, again, you can find them in the show notes that I came up with, might be helpful and insightful, but there's one thing that you can't use AI for. Are all your relentless phone call sleuthing and all the things you're able to follow by just calling, calling, calling, not going to cover. And that is you got to go visit probably more than once. And I want to share with you a few of the things that we've uncovered during some of these onsite visits over the years. These are more recent, but we've been doing this for a long time. So first of all, this one was a few years ago.

(05:44):

We popped in on the weekend. We told them ahead of time we're going to be coming, and then we could only do it on the weekend because it was an out of town visit. And they said, "Yeah, come on by." And so they'd advertise certain staffing ratios, engage staff and everything else. And so we were walking down the hallway, peeking into a couple of the bedrooms, and we noticed residents by themselves in a bedroom with no lights on, just fidgeting or just doing the hand stimulation. Obviously they weren't engaged. No one was really paying attention to them. That was a bit disconcerting. And then we get down to the one big room where almost everybody is at. And so all the residents are on card table chairs in this big room looking at one itty bitty TV set. And there are two staff members off by the side chatting with one another and keeping an eye on their team.

(06:26):

So where's the engagement? Where are the ratios? Where is the online, ongoing learning? Didn't see that. We just saw sort of infinite boredom. It left us pretty darn depressed as you can imagine. So we visited another program during the week. This one was during the week. It was in a beautiful rural setting, rural Texas. Took us a couple hours to get there. A beautiful day. Spacious grounds, gardens. Obviously they had some outdoor activities for their team and the residents. And there were lots of staff in multiple buildings. I mean, you talk about great ratios. This was about as close to one-on-one as you could ever get. And we're thinking, "This is fantastic." And then I saw something that I'm never going to forget. And I'll tell you what it was. So we saw a resident, a young man being taken down to the ground by the staff.

(07:19):

Not one or two, but three staff members physically took this guy to the ground. They had a mat underneath him and they themselves had mats so that he wasn't going to get hurt. One of them had his arm once he was on the ground up like this so he couldn't hurt his arm, couldn't get anybody. Another one was basically on top of him with a mat. The third guy had his legs and a fourth guy was watching all this. So there were four staff members that took this young man down to the ground. And I heard him saying, "Let me up. Let me up. Let me up." I'll never forget that. I mean, the last thing I want for my son, and you probably want for your son, for daughter, is to ever see them in that situation. And this happened again a couple hours later with a totally different resident in a different room.

(08:10):

And maybe it was justified. Maybe there was a history there that I had no knowledge of. And maybe they had tried other interventions besides physically taking someone down to the floor with mats. But boy, it sure didn't feel like it. And that loss of human dignity and that lack of respect was something I would never want to see for our son. And then we visited a third program. And this was a much more upbeat program. We actually visited it three times because the first time we went, it was phenomenal. I mean, everybody was upbeat. The staff obviously enjoyed being there. The residents or the community members, the day program was great. They were all engaged. They were having fun. They were doing all kinds of different activities. It was just super cool. And the buildings were immaculate and incredible and new and they had technology and TV sets and screens everywhere.

(09:06):

So we went back a second time and chatted with the executive director and were just as equally pumped about all their plans and what they were doing. And so then we went to their grand opening, this incredible multimillion dollar residential community that they had built. Brand new, beautiful group homes, even many homes where some of the lower support residents could live by themselves, but very close to one another. And then with the staff member, they could watch everything. They had this big, huge common area, brand new. Talk to some of these verbal community members that were there and their parents about how excited they were. You sort of feel the energy in the buzz. And we had some friends, some parents whose son had been in this program for a while and they were just super excited about him living there. Their entire plan, their life dreams were for him to live there.

(09:54):

And sure enough, he got in one of the group homes, one of the very first ones, and he was living there for a week or two. And guess what happened? He had an incident of aggression and he got kicked out forever. So here they had spent all this time and money because they'd invested in this place. Their dreams, their whole plan was this. He's kicked out within a couple of weeks of starting the program.

(10:17):

And then a little while later, we heard about a lawsuit from another parent. And then there was another lawsuit. So bottom line is you've got to visit probably more than once. And you certainly need to keep your ear to the ground. And you can use AI, but you certainly need to talk to other parents that are in the program, that are thinking about the program. Hopefully some of the staff in the employee set, what are they saying about the program? And what's really going on? And visit during the off hours where you see the B team, the junior leaguers. And are they on? Are they with it? Are they engaging? And you also have to be tolerant of the things that don't really matter if you see the things that really do matter. So maybe there are a few dirty dishes in the kitchen sink and you think, well, that's not good, sort of gross.

(11:05):

But then everyone's outside, staff and residents alike, having a great time together. Or maybe you walk into your child's bedroom. It isn't quite as well kept. The bed's not made as you like it to be. But they take you by the hand and they can't wake you to lead you to their newest buddy or something they've been doing that they're super excited about because they clearly enjoy being there. Because really it's not about what the numbers say on the website or what you read in the reviews that matters. It's what you see when you're there. It's what you feel when you're there. Is there a happy, upbeat vibe? Do people seem juiced? Do they seem safe? Do they seem respected? Do they seem like they are living a life, their life? Not just being managed because perfection is not the goal. I think perfection with this group is impossible.

(11:57):

Mistakes are going to be made many times. Clothes are going to get dirty. Hair is going to be a mess. Routines will get disrupted. Staff's going to have hard days. Our kids certainly have hard days too. But what matters is honesty, trust, respect, joy, and the kind of care that shows up in those small moments when no one's around. When you're not there watching, when no one's trying to impress you, but you sort of see something out of your corner of your eye. Hey, that's pretty cool. It's not my son or daughter. It's not somebody I'm paying attention to, but I can tell. I can tell that they're doing the right thing and that person's responding the way they should. So when our son Michael comes home after a few days at the R&R program at J13, we don't have a full residential yet. We just have a weekend respite program.

(12:44):

And he's a mess, right? His clothes are a mess and water bottles dirty and half his clothes probably were left and his iPad was left at the place. And okay. But what I'm looking for is a smile on his face, right? Or at least, and this is what he does more often than a smile on his face. He gives me that sort of cool look like, Hey dad, I'm here. Don't bug me. I'm 36 years old. I have my own life to live and I'm okay. To me, that's what I want to see. Not finding a perfect place, but finding a place where our profoundly autistic son, your profoundly autistic son or daughter can be safe. They can be loved. They can be respected and they can be themselves. A place where they can have the routines and the relationships, the activities. And most importantly, the people, the staff, the team that generally enjoys being there with them.

(13:35):

A place where they're not just cared for, but where they can become more fully who they were truly meant to be. This place is hard to find, but it's not impossible. And the more you know what to look for and how to look for it, the more you visit and you ask those hard questions. You trust your eyes, you trust what you feel. You listen to other parents. You refuse to settle for just the beautiful buildings without the meaningful care. The better chance you have, we all have of helping our children build a life beyond us. And that is the hope. That's why we started J13. And as I said, we're not there yet, but we're on our way. Now I was going to talk about guardianship today. I figured after doing some more research that I really wasn't qualified to talk about guardianship.

(14:21):

So I've got a special needs attorney, a guardianship attorney in a couple of weeks coming on the pod. She's excellent, very experienced, and she's going to give us all the skinny on the financial side of things, the special needs trust, the guardianship and all that. And then next week, I hope to interview another dad who also has a profoundly autistic son and have him share with us some of his journey and some of the things he's learned. So I hope to see you next week. In the meantime, take care of yourself and certainly take care of your autistic son or daughter too. See you.