When my wife Kay and I first set out to build a residential and day program for our son Michael who is 36 years old and has profound autism, I thought culture was the last thing I needed to worry about. I was wrong. What I learned changed everything about how I understand behavior supports for autism and what actually makes a program work long-term.
Key Points:
- Autism behavior supports works best when culture matters more than facilities or funding.
- Strong programs rely on trust, transparency, and no-blame communication.
- Quality care requires deep, personalized knowledge of each individual and their routines.
- Successful programs focus on staff alignment, relationships, and shared mission over structure.
The Dream We Had and the Wake-Up Call We Needed
Kay and I had been running our own businesses for 40 years. We weren’t naive. We knew how to manage teams and build systems. So when we bought a lot near Texas State University in San Marcos walking distance to campus, close to jobs, in a vibrant community, we thought we had the blueprint figured out. We’d build a beautiful home for Michael and some of his friends, staff it with incredible students from the special education department and create something magnificent.
Then we hit permitting walls, licensing complications and a dawning realization that we were looking at the wrong regulations entirely. That’s when we brought in Johnna Oppermann, who has spent decades launching and rescuing residential and day programs for individuals with complex needs, including profound autism. Her first question wasn’t about square footage or licensing; it was about culture and I’ll be honest, my initial reaction was dismissal. I thought, we don’t have time for that. We need to solve real problems.
Johnna had a different perspective. And she was right.
What “Culture” Actually Means in an Autism Supports Program
most practical lever you have. When Johnna began working with our team, she conducted interviews with every staff member, board member, and family involved. What she found was sobering: nearly everyone had one foot out the door. The call-out rate among our direct supports staff had climbed to nearly 80%. That’s not a scheduling problem. That’s a mission problem.
“This is indicative of people who don’t understand the mission, what their role is and how valuable the part they’re playing is.” Johnna Oppermann
For six weeks, Johnna had us do nothing but focus on staffing and culture. No new building plans. No regulatory filings. Just: clarify expectations, check in with every team member and close the gap between what people thought their job was and what it actually meant to show up for someone like Michael every single day.
The results were striking. Within a year, we saw staff go from chronic call-outs to extraordinary commitment. One staff member who had been a repeat call-out drove overnight from California with her mother rather than miss her Christmas shift. Nobody asked her to do that. She did it because she finally understood the weight and privilege of her role in Michael’s life.
Staffing Is the Program Not the Building
One of the hardest things for a parent of an adult with autism to accept is that the facility, the location, and the resources matter far less than the people. I spent enormous energy thinking about the physical space we were building. Johnna redirected that energy toward the humans who would fill it.
Today at John 13, we have a dozen or more direct supports staff working with our community members daily. What makes our behavior supports approach for autism work is that those staff know each person deeply. They can sense when someone is at a six-and-a-half on a scale toward meltdown. They notice disengagement, boredom, dysregulation not because they were handed a checklist, but because they’ve built real relationships over time. You cannot buy that with a better floor plan.
What strong program culture looks like
- Staff understand the mission and see their role as a privilege, not just a job
- Truth surfaces — everyone feels safe to raise concerns without fear of blame or dismissal
- Families can call with a million questions and feel genuinely heard
- Mistakes are treated as shared learning opportunities, not disciplinary events
- Individualized knowledge of each participant is built over time through real relationship
Behavior Supports for Autism Require Transparent, Blame-Free Communication
One of the most counterintuitive lessons I’ve learned is that a no-blame culture actually produces better outcomes for behavior supports. When a behavior incident happens, the last thing I need is a staff member hiding what led up to it. What I need is full transparency. What were you doing, what was Michael doing, what happened right before things went sideways?
If someone was distracted by their phone and missed an early signal, I need to know that, not so I can fire them, but so I can understand the chain of events and build a better system. Johnna put it well. Fail fast, fail forward. When the desired outcome is shared, there is no room for blame or shame. And when staff don’t fear punishment for honesty, the information flow that makes effective behavior supports for autism possible actually happens.
That same transparency extends to practical accommodations. When we dug into why staff were sneaking phone time on shift, we discovered they had no designated break structure, no moment to make a personal call or use the restroom when working one-on-one with a participant who needed constant supports. So we fixed the structure. The problem wasn’t character. It was the absence of a sustainable system.
You’re Not Enrolling a Participant. You’re Enrolling a Family for Life
Johnna spent nearly two decades overseeing a large residential program and she told me something that has stuck with me. The number of parents who called her on their deathbeds asking, “Is she going to get the apple spice cake I made her?” That question tells you everything about what families actually need from a program. They don’t need a glossy brochure. They need to know that the people caring for their child know their child, their history, their preferences, their family traditions and what makes them feel safe and celebrated.
“The answer is not a person or a building. It is a sustainable program that will last beyond you.” Johnna Oppermann
Every parent of an adult with autism carries the same core fear: What happens when I’m gone? The only real answer to that question is a culture, not a contract, not a facility, not a well-funded nonprofit with a nice logo. A living, breathing culture of people who are committed to showing up, telling the truth and caring for your family members the way you would.
What We’re Doing at John 13 and What’s Coming Next
At John 13 in Austin, Texas, our day program has grown to serve a community of individuals with profound autism and complex behavioral needs. Everything we’ve built: our training approach, our communication structures, our individualized supports plans flows from this foundation of culture first. It didn’t come naturally to us. We had to be taught it. But we’re grateful every single day that we were. In the next episode of the Autism Labs podcast, Johnna and I will go deeper into something equally important for any parent searching for behavior supports for autism in their community. How do you actually assess the culture of a program you’re considering? What questions do you ask? What red flags do you look for? What does a healthy program look and feel like from the outside? If you’re in this journey whether your son or daughter is still in school or has already aged out, that conversation is one you won’t want to miss.
If you’re interested in joining our private Facebook community for parents and caregivers seeking residential options, guidance and peer supports for profoundly autistic adults or adults with complex needs – Click here!
Transcription:
Mike Carr (00:03):
Welcome back everyone this week to another Autism Labs episode. Today we have a really special guest. Johnna, who’s been in this space with complex special needs kiddos and parents for decades. She’s worked at a variety of different places or with a variety of different folks, helping them set up residential programs, helping them understand how to address challenging behavior. And so any parent that’s listening to this today, I think you’re going to learn some things about your journey as your son or daughter ages out of the school system and you’re looking for a program that might serve them after that, or even if they’re still in school and you’re looking for something in the evening or weekends or whatever it might be. So I’ll let Johnna give you a little bit about her background first, and then we’re going to talk about culture today and how important it is to suss that out before you lock and load on a particular program or particular organization.
(00:52):
So Johnna, please introduce yourself and tell us a little bit about your journey.
Johnna Oppermann (00:54):
My name is Johnna Opperman, and I have been in this field, like Mike said, for most of my career. And I’ve worked with kids with profound autism in a residential treatment setting. And I’ve worked in residential communities and in day habs and helped lots and lots and lots of nonprofits who are launching a residential program or a day program and helping them get off the ground or helping them get through a crisis in their culture or a transition of their management. I’ve been working with John 13 or J13 for the last few years. And yeah, it’s a privilege to be a part of this very cool organization.
Mike Carr (01:36):
So for those of you that don’t know, our son is 36 years old and we’ve tried for decades to figure out how to accommodate his needs when we become too old that we can’t take care of him anymore. And we’ve stubbed our toes and done many things wrong. And one of the paths that we went down was, well, let’s just go ahead and do it ourselves. So we actually bought a lot near a Texas State University down in San Marcos that was in walking distance of the campus. And we thought we’ll just build this magnificent home for our son and some of his buddies, and we’ll staff it with these incredible students from the special ed department and whatnot. And it’s a very eclectic community and their jobs within walking distance, this, this and that. And so then we started going down the path of how do you build this place?
(02:18):
And we got into some permitting issues and some licensing issues. And that’s when we brought Johnna in and she talked to us about stop and let’s talk about culture. And I thought this was ridiculous. I said, “We don’t need to worry about culture.” So Johnna, share with us why what you suggested was so, so important and why my disdain or lack of understanding of the importance of culture was something that you had to educate me on.
Johnna Oppermann (02:44):
Yes. Well, it was more of a leading you to discover it for yourself
(02:48):
Because that’s the most effective way for you to actually get it. But the biggest thing that when they came to me, they handed me plans, like building plans, and they were looking at the skilled nursing facility regulations and not even the right regulations. And so they were completely overwhelmed. And I mean, when I met with the team at first, I mean, they were just distraught, all of them and didn’t know what to do next. And so I said, “Okay, so how many people do you have? ” Just Michael. Okay. Well, we probably need to work on that and stop trying to build something for just Michael because I know working with, and I didn’t mention this before, but my mom actually was born with lots of mental health and even IDD. I was one of those people that you kind of go, “I don’t really know how you had a neurotypical child.” And she did.
(03:34):
She had two. But I watched her journey with my grandmother and the answer is not a person or a building. It is a sustainable program that will last beyond you. And so the greatest fear every parent has is what happens to my child when I’m gone? How do I know they’re going to be looked after? How do I know they’re going to get their favorite cake on their birthday? How do I know they’re going to get their family traditions that are so important to the family and they’re safe? Well, what they had in place was a home program that they were staffing and it was really the pilot, and it still is to some degree, the pilot for the residential program. So I started with interviews of all the staff, team, board, everyone, and learned that everyone was up to here in the minutia and there was so much miscommunication.
(04:24):
To be honest with you, everyone had about one, except for probably Mike and Kay, had one foot out the door. And I was like, “Okay, well, we need to first establish a program.” And one of the things that I noticed right away was the executive director was constantly struggling because of the call-outs with staff. They were calling out nonstop. I mean, the call-out rate was at almost 80% and I was like, “Okay, well, this is indicative of people who don’t understand the mission, what their role is, and how valuable their part is that they’re playing.” And so I worked with Haden and I said, “For six weeks, all we are going to do is focus on staffing and culture and clarify expectations, check in with all of the team and make sure they understand or what is their understanding, how big is the gap?” And Mike and Kay were both having to deal with these call-outs.
(05:12):
And so once they started to see that shift, I think that’s when it shifted for you, Mike, was when you were like, “Oh, there’s something to this whole culture business and clear communication, clearly defining expectations.What does a good job look like? Everyone wants to do a good job. That’s the mindset you go in with. ” And we went from that to within a year at Christmas, one of the staff who was a regular call outer, she was in California and supposed to come back for her shift around Christmas. And for those of us who work with this population, I see it and I think it’s important for other organizations to see it as a privilege that you get to be with these individuals on holidays and times when their families have never gotten to experience possibly a holiday with their grandkids or with their extended family because their child was not able to participate.
(06:03):
And so Haden called me, the executive director and was like, “Okay, she can’t make it. She’s in California. The Southwest Airlines, everything, the computers are down.” And I was like, “Okay, so this is in time when you can either be unstoppable or you can just accept that there’s a bump in the road.” And I know it seems like a big bump, but trying to instill this sense of you are called to something enormous and it’s such a privilege to be in this position and you get to give a gift to Michael and to the cars so that they all have an extraordinary Christmas or one of the first extraordinary holidays that they’ve been able to have in a long time. And so Aiden called her and just said, if there’s any way to explain her role, the impact of her not being able to be there, but also said, “I understand if you can’t, I just want you to consider that there’s a possibility you’re not thinking of yet.” And then she actually had her mom drive her from California overnight to be here for her shift, which was extraordinary.
(06:59):
Obviously that’s not what we were asking her to do, but it’s a pretty clear, beautiful picture of when someone gets the impact of them not being there or what their role is. And when that shifts for somebody, the level of buy-in and we are all marching to the same beat and all showing up when we are supposed to be there, it creates a completely different culture. I mean, so I would say that was over that year, there was a pretty significant cultural shift in everyone. You
Mike Carr (07:24):
Covered one of the things that, because we’re not dumb people. I mean, Kay and I have managed teams of people before, we’ve had our own business for 40 years,
(07:33):
But with this population and with trying to do this kind of program, and for every parent, anybody out there that’s watching this, that’s thinking about these things, the greatest learning I’ve had is to show a sense of humility and assume that everything you think you know, you do not know because this is a different space and the needs are different and the challenges are horrendous and the behavior can cause things to go south very quickly and it is not easy. And so what Johnna helped us do, and you’ve already got a sense of this, I think listening to her talk is, because she’s done this before, we’ll focus on what’s really important first.
(08:09):
And there’s so many other things that are going to be much harder, much more difficult. They don’t have to be addressed right off the bat. But the most important thing is this culture because staffing is the key. It’s not the facilities, it’s not how much money you’ve got. It’s not how many other parents you have and how excited everybody is. It’s the boots on the ground troops that are with your son and daughter or with the community. And now we’ve got a dozen, 13, 15 people that are there every day that we have our day program. So the community’s grown, but it’s whom they’re interacting with and how those staffers love and know every community member and are with them enough to even sense when one of them is six and a half a meltdown or they’re not happy or they’re too bored or they’re disengaged.
(08:56):
To build that is so important. And without it, I don’t think anything else really matters. And that’s what Johnna taught us how you do that.
Johnna Oppermann (09:05):
It’s relationships, right? You’re building trust and you’re building relationships. I think one of the most important parts of culture is that you have a culture where truth will surface, that your staff, your parents, your community member, your participants, that everyone feels safe to tell the truth about how they feel or what is going on for them or if there’s a misunderstanding that they feel like they can come forward and say, “Hey, I have a concern.” And they know how to do that and they know that they can predict the response is going to be received well and not sweep that under the rug or that’s no big deal or they’re not going to be blown off. And that, because that’s detrimental to this population, you have to have a transparent culture. You have to be transparent. Otherwise, I mean, you need to be that for the families.
(09:48):
They need to be able to sneak into the bushes and look at you if they want to. They need to know that if they want to call and ask a million questions, they can do that. I mean, they just need to be reassured. This is their most vulnerable, most precious, most loved person that they feel the most responsibility for in their life. That is a huge responsibility for the program that is serving them and their family.
Mike Carr (10:09):
So a couple things that Johnny, you helped us do, and I think it’ll be illustrative of what this culture actually looks like and how people have to feel comfortable being truthful and very open with their feelings and concerns is there’s no blame. There will be mistakes made in this environment with these folks, it’s just going to happen. And you can have the best procedures, the best backups, the best training in place. And I think we have some of the best out there and folks are still going to make mistakes. And the whole point of that is, tell us as soon as you think something’s gone off the rails, tell us what you think happened. We don’t care if it’s because you were late. We don’t care if it’s because you were texting on your phone and you should have been paying attention to the other person.
(10:47):
Be honest with that.
(10:48):
So we understand what the precursors to a behavior or an event were, and so then we can understand and craft a solution and we all learn from that. So now if the behavior continues and the same things happen five times in a row because you’re still texting on your phone five times in a row, well, that’s a different discussion, right? But so much of this is the staff understanding the ramifications of what they’re doing or something that they’ve missed, not through any malice on their own part or anything that they felt they were doing wrong, but just they didn’t get it or they didn’t realize that, boy, that phone that you’re texting on really is not something you should be using when you’re on duty with crew that’s out there climbing or walking around in a park or doing whatever. And so you set the guardrails and you have this kind of discussion.
Johnna Oppermann (11:32):
Even what you’re saying right now, we have encountered that very specific scenario. And one of the things that we realized was because they’re on and they’re one-on-one possibly with somebody, they don’t have a chance to go to the bathroom or to make a phone call if they need to make one. And so we had to rearrange so that they didn’t feel like they were having to cram it in and they needed to be able to have the space to do that if they needed to. So that was something we actually did modify, but it took them saying, telling the truth. And I mean, it’s like absolutely what you said is true. Fail fast, often fail forward. There’s always an opportunity and a learning. And when it’s a shared responsibility, the desired outcome, then it’s really there is no room for blame or shame. The
Mike Carr (12:13):
Other thing that’s so different to me that you don’t realize, I don’t think until as a parent you start to go down this path is we’re not leaving failure in terms of long-term failure of the program on the table. We are committed to this regardless of the mistakes, regardless of the cost, regardless of all the wrong turns that we’re going to make, because we have to be because personally our son’s
Johnna Oppermann (12:38):
Are for life
Mike Carr (12:40):
And the parents who’ve entrusted us with their children and they’re betting their retirement or their children’s future on us bringing them in, keeping them safe, making sure they are having fun and being challenged every day out in the community, not just in a closed environment, not isolated. There’s so many things that you have to bring to the table to create this environment that any parent would be comfortable in leaving their child in and them not around, that the possibility of this not working out is not an option. I mean, and if it comes down to your last penny or having to stay up all night or whatever it is, that’s part of the commitment because we’re talking about people’s lives and people’s feelings and the most important stuff when it comes to being a human being and serving others. And I know you’ve seen this not just at John 13, but at other places, is there a story or are there stories that come to mind that illustrate this and how important this is and how from a cultural standpoint …
Johnna Oppermann (13:40):
I think a lot of programs will accept a participant versus accepting a family. And I have always been of the mindset that you are enrolling a family for life. That is not a light commitment to make. So there has to be a foundation of trust in that relationship and that means full disclosure. If there was a mistake made, that means understanding and fully knowing what their desires are. I can’t tell you as one of the programs that I was over for nearly two decades, it was a residential program very large and the number of parents that would call me on their deathbeds and said, “Is she going to get the apple spice cake that I make her?” And yes, the answer is yes, I have a recipe, it’s in her file and it’s in her personalized program that every staff will continue to know that this is a part of what is important in her life or when a hurricane would hit, “Are you able to take care of my child?
(14:44):
How are you doing this? How are they going to be okay?” And just sharing very honestly. But it was also a continual evolution that they had input that we needed and we would shift if needed. I mean, everyone is in this and wants the same thing, so why would we not welcome their input? I mean, I knew where I stood with all my families, I knew where I stood because they would call me if they were upset. And I think even today at J13, we experienced the same thing. I mean, I worked super close with Haden and I’ve had parents come to me. He has parents that come to him if there’s a question or a concern, and we will take it back and we will dig into it. And then we follow up and say, I mean, we’re not perfect at all, but making sure that parents’ voices are heard or family members’ voices are heard because sometimes it is a staff member who may need additional training and didn’t understand the way to redirect something and they set them off.
(15:39):
Those things happen, but instead of it being like, “You set them off and you did…” It’s not like that. It’s, “Oh, okay, I see this gap in our training going from Michael to a different individual that you can’t really approach the same way.” And so that was pretty eyeopening for J13 when we realized, okay, we had this great training program with Michael, but not everybody’s like Michael. And so we have to make sure that we diversify their knowledge of how to redirect behaviors with more than just a Michael, but not as much as we needed to.
Mike Carr (16:10):
Right. So this is going to be a great segue into part two of this episode. And so next week, please come back because I think one of the things that we’ve learned, and I know a lot of you parents have heard this too, especially if your diagnosis is autism, is if you’ve seen one child or adult with autism, you’ve seen one child or dealt with autism because it’s such a broad diagnosis and everyone has their unique idiosyncrasies or behaviors or things that set them off or things that gives them joy. So next week we’re going to continue this conversation. As you can already tell, Jana is a wealth of experience. She’s been doing this for decades. She’s worked with hundreds of residents and folks in day programs and parents. And so we’ll continue this conversation next week and dive into some more of these techniques and examples and how to manage expectations and how to assess out programs that you might might be looking at in your local community
Johnna Oppermann (17:02):
Because
Mike Carr (17:03):
We’re in Austin, Texas, and we can’t offer services outside of Austin, Texas.
Johnna Oppermann (17:05):
Right. How do you look at a program and go, “What is your culture? How do you assess that out? “That’s I think important for families to know how to do.
Mike Carr (17:13):
So we will continue this conversation next week. Thank you all so much for joining us this week and I hope the rest of your day is truly wonderful and miraculous. See ya.
