When I first started searching for autism respite care for my adult son, I was focused on the practical details: schedules, staffing ratios, forms, certifications. What I did not understand then, and what I now believe is the single most important factor in any program’s success, is culture. Not the mission statement on the wall. Not the brochure. The actual lived culture of the people who show up every day to serve your son or daughter. This is part two of a three-part conversation I recorded with Johnna Oppermann, our program consultant at John13.org, where we run autism respite care, summer camps, a growing community day program, and a pilot residential program.
Key Points:
- Culture matters more than facilities or paperwork in autism respite care.
- Strong programs are transparent, open to observation, and value family feedback.
- High staff retention signals trust, stability, and quality care.
- Slow, thoughtful intake and planning is a key sign of a good program.
Culture is not an accident — it is a daily decision
Before Johnna came on board, we had the University of Texas supporting our program for six years. Students rotated in and out each semester by design; it was a natural, built-in cycle. But what happened after Johnna helped us shift our focus to culture was striking: people started coming back on their own. Nursing students who had graduated. Volunteers who had moved on to paying jobs. They returned not because we asked them to, but because they could not find what our program gave them anywhere else.
That is culture. It is the thing that makes people choose to stay even when they do not have to. And for a family searching for autism respite care, it is the clearest possible signal that a program is working.
The culture test: Ask any program how many staff or volunteers have returned after their initial role ended. A program where people come back, not because they are paid to but because they want to, is a program where something real is happening.
What cultural health actually looks like from the outside
When Johnna evaluates a new program, she is not looking at the décor or the paperwork. She is looking at the people and how they interact. She listens for how feedback from families is received. She watches whether there are invisible walls, topics that staff deflect, questions that go unanswered, an atmosphere of defensiveness. A healthy culture, as she describes it, is one where the door is open. Come and observe. Come and ask hard questions. We have nothing to hide.
One of Johnna’s mentors, a CEO who was also a mother of a child with autism, used to tell families: come hide in the bushes. That philosophy of radical transparency as an invitation is one of the best cultural indicators I know of. If a program makes you feel like you are asking too much when you want to observe or give feedback, that tells you something important.
Signs of a healthy culture
- Families are welcomed to observe. Staff have been there for years. Leadership is accessible. Feedback is genuinely invited and acted on.
Signs of a culture problem
- High turnover, temp staff filling gaps, defensiveness around questions, rushed intake, families feeling they have no say.
Staff retention is a cultural report card
One of the clearest cultural indicators in any autism respite care or day program is staff retention, and not just turnover numbers, but the story behind them. Johnna once inherited a residential program she described as having undergone what she calls “cultural homicide.” The previous director had been stealing and kept staff divided so no one would piece together what was happening. Intentional division is one of the most destructive forces a culture can face and it shows up as constant churn among the people who are supposed to know and love your child.
When Johnna came in and simply opened the door, allowed honest conversation, removed the fear, something shifted. Good people stayed. The retention story changed entirely. The lesson I took from this is that you are not just counting how many people leave a program. You are asking who stays and what does that tell you about the environment?
The question to ask: “What is your staff retention rate, and can you tell me about team members who have been here the longest?” A program with a culture worth staying in will have people who have been there for years and can speak to why.
Compensation matters — but it cannot substitute for culture
People do not enter caregiving for adults with IDD because they expect to get rich. That is simply not the reality of this field, and I say that as someone who tried for years to solve retention problems with money. Johnna is direct about this: beyond a fair living wage, the motivational lift from a raise or bonus lasts about three weeks. After that, what keeps people is relational.
It is the quality of leadership they work under. It is whether they see room to grow horizontally into new skills, or vertically within the organization. It is whether their voice matters and whether they feel they are part of something larger than a shift on a schedule. At John13.org, we use stipends and bonuses to make sure base compensation is fair. But the reason people stay is the culture, the joy of the environment, the sense of genuine importance, the community they are part of.
Johnna frames it in a way I have never forgotten: The quality of experience your staff have is in direct correlation to the quality of experience your participants and families have. A staff member who feels unseen and undervalued cannot give your son or daughter the full presence they deserve. Culture flows downward and it flows outward.
Culture shapes even the smallest daily choices
One of the things I found most surprising as we built our program’s culture is how it shows up in details I never would have anticipated. We ask staff not to wear jewelry or fragrances. Our son is drawn to anything that glitters, and necklaces have been broken. Certain scents cause some of our community members to fixate or become dysregulated. We even had a staff member change her hair color to bright orange and it triggered a strong negative reaction in one of the guys before anyone understood what was happening.
In a culture where people genuinely understand the mission, these requests are not a burden. They are embraced. Everyone shows up the same way without the jewelry, without the cologne, without the distracting accessories and something unexpected happens. The facades come down. Everyone in the room is just a person, fully present, there for one reason. I find that almost spiritual, and I do not use that word lightly.
Johnna adds an important nuance that I want to be sure to capture: The goal is always dignity. These modifications should be invisible and support adjustments that help people thrive without making the environment feel like a clinical setting or signaling to participants that they are “different.” The staff who understand that distinction are the ones who truly get the culture.
Culture starts at intake and intake tells you everything
The intake process is where culture becomes visible before you have ever spent a day in a program. A program with a genuine culture of care takes weeks to get to know your family. They visit you at home. They bring your son or daughter into the environment gradually on a volunteer day, a few hours, building slowly, because they understand that success breeds success. A rushed intake, a 30-minute form and a payment link, is not just an administrative shortcut. It is a cultural signal that this program values enrollment over the people it is supposed to serve.
I know parents are desperate, and I understand that desperation personally. But Johnna is right when she says that a program willing to do the slow, thorough work of getting to know your child before making any commitment is a program that takes its culture seriously. They are telling you, through their process, what kind of organization they are.
What we do at John13.org: We visit families at home, observe community members in natural settings and create an intentional written transition plan before anyone begins. It takes weeks. Every part of that process is an expression of our culture, not just a policy.
Questions to ask any autism respite care program about their culture
After everything Johnna and I have worked through together, these are the questions I now recommend every parent ask before committing to any program:
- How long does your intake process take and does it include a home visit or in-person observation?
- How do you handle feedback from families and who do I contact if something is wrong?
- Can I come observe the program in action before we commit?
- How long have your longest-serving staff members been here and what keeps them?
- What does your transition plan look like for a new participant and are parents part of building it?
That last one is my personal litmus test for culture. A program where families are genuinely part of the process and not just consulted, but included is a program where the culture is pointing in the right direction. You should have a say in a lot of it. If a program cannot tell you clearly how your voice fits into the way they work, that matters.
What comes next
In part three, Johnna is going to take the gloves off with me. I came into this as one of her most challenging clients, a control-driven dad who had to unlearn a lot of habits before I could stop getting in the way of the culture we were trying to build. If you are a parent who recognizes yourself in that description, that episode is for you. And honestly, it was the most important conversation of this whole series for me personally. If you are currently searching for autism respite care, community day programs or residential options for your adult son or daughter, I hope this gives you a clearer lens for what to look for and what to walk away from. You can learn more about what we are building at John13.org.
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 (00:04):
Welcome back to another episode of Autism Labs. And as a continuation from last week, I’m talking to Johnna Oppermann, who is a consultant for us for John13.org, has helped us set up an amazing community program. This summer, we’re going to probably serve 30 or 40 teens and young adults in our summer camps. We have a day program that’s growing to five days where we might be serving 20 or more. And ultimately, we’re going to have a residential program. We already have a respite program where parents can take off for weekends and we’ll take care of their sons and daughters at our respite house and the staff knows them. So we’ve made a lot of progress over the last couple of years that we’ve had this podcast, but we wanted to continue from last week and talk about the importance of culture. And when you’re looking for a program for your son or daughter, some of the things to look for.
(00:53):
And what are the goshes? And I want Johnna to sort of speak to this because she certainly from the other side had to do this for parents that are coming to her programs with the different nonprofits she’s been associated with. And she certainly has helped us and a lot of other parents in looking at alternatives. So Johna, any thoughts on this?
Johnna Oppermann (01:08):
One of the things that I learned from a CEO that I was under, who was also a mom, was she would jokingly, but kind of serious too, say, “Come hide in the bushes. We don’t have anything to hide. Come look. Come watch. What do you need to feel comfortable?” And I think just that openness and that transparency can look many ways. However, that also looks like how do they receive your feedback? How do they receive questions? Is there walls that you hit that they’re not willing to discuss with you? Are there clear expectations for parents? And do they really get to know you and your child? Because a lot of programs just will accept applications because they’re desperate for enrollment. I understand that. When you’re looking for a long-term solution for your child or even one that I believe is a signal of quality is they will really get to know you.
(01:59):
It may be a longer process, which can drive some parents crazy because they’re desperate as well. However, if we’re making a commitment that we believe we can serve your child and we can really do it well, how can you do that if you don’t know them well enough to know really what are their triggers? What does their past look like? How did they transition into different programs? What did their 18 plus program look like? Have they been in private school? What did that private school look like? How the cadence of that school and the expectations and where are they coming from so that then they can create a very intentional and thorough plan for what their transition into your program will look like. Because so many, honestly, programs don’t necessarily do that. The due diligence of really finding out where is their point of reference and how are you going to bridge the gap between what they’ve been doing versus where they’re going and how big is it and how are you going to shorten that learning curve for them?
(02:49):
Because success freed success. So if that means they come one day a week for two hours for five weeks and then they’re happy and successful and then you build a two or you build a full day, then do it because this is a long game. And what’s so sad is watching someone jump in too soon and then they don’t do well and then they get kicked out of a program. That is criminal to me, in my opinion. I think it is wrong. It is a poor stewardship of that program’s relationship they have with this family. And I mean, to me, that is a huge red flag. If you see people getting kicked out of programs, they have not vetted the family or the process of intake well enough.
Mike Carr (03:23):
Let me share with you guys what this means because Johnna is absolutely right in how important it is to get to know folks. And I thought this was crazy how much time we take in the intake process with a new community member and their parents. But just to give you an example, so we have a very thorough form that really gets into the history and where they’ve been, a lot of the questions that Jonna has answered. Now sometimes parents though will quite honestly not tell the truth because their son or daughter’s gotten kicked out of other programs or maybe has a behavior that’s a little bit more aggressive than they want to let on because they want in the program.
Johnna Oppermann (04:01):
Scared. Yeah.
Mike Carr (04:02):
Right. And so we will also then go visit them at home. We will see their son or daughter in the home environment and what that’s like and how they behave there. We may bring them then to a volunteer day or some kind of a day or two where they can interact with some of the other community members and we sort of get a sense for do they enjoy it? What accommodations are we need to make for them? How reticent are they? How receptive are they? Are they more of an extrovert? I mean, you learn so much, right? And so this isn’t something that’s instant. So the advice I would give as a parent is if you go to any program and it’s a quick 30 minute fill out the form and your son or daughter’s in, you give us the thousand bucks or whatever it is, big red flag.
(04:45):
We don’t do that. We take weeks. There’s lots of paperwork. There’s lots of one-on-one in different scenarios because as Johnna was saying, we want success. And it seems like a huge investment as a parent to make when you don’t even know for sure if this is the right program, but you’re going to learn going through the intake process as to whether or not this program really does give you the warm fuzzies and the comfort and the intuitive yeses that you’re after or you start to see red flags along the way and say, “No, this probably isn’t right for my kiddo.” And Johnna, I don’t know if there are other examples or other things that you want to add to that.
Johnna Oppermann (05:18):
Things that I look for when I’m just trying to get the temperature and the pulse on, like I’m working with another nonprofit to see what really needs to be worked on versus what they’re just handing me that they think they need help with is what’s your staff turnover? What’s the continuity of staff that are with your child from program? Do they stay and get to know or do they constantly rotate or like what does the staffing model look like? Because when you have a constant stream of new people or you have like a temporary staffing agency that they’re using to fill a gap, you see so many new behaviors, so much upset, you have a lot of issues going on typically, not just the turnover, but what’s the retention? Because you may see that there’s sometimes some intentional turnover, right? When I inherited a residential program, it had faced, I called it cultural homicide.
(06:07):
And the director that was over it before me was, she was stealing. And so how she was able to operate in that way was that she created division amongst all the staff. And because if everyone was connected and talking, they would start to put the pieces together. And so there was some intentional turnover that happened during that time, but I mean, it was change management at its finest. It was a big, huge challenge. But what I found was is that when we opened the door and just allowed people to talk freely and be open, then we started to retain people. And yes, we had turnover, but the retention was for the good staff. It showed a very different number. It showed a different story, if you will, that, okay, they retain good people. It’s not just the turnover. I would say those are the biggest things, to be honest.
(06:52):
I mean, I could go off forever on this, but I think how are they intaking and what is the plan that they come up with for what’s the process that they go through to come up with a transition plan for your child? How do they figure out what that should be? Are you a part of that process? Do you get to have a say in that process? And what else do you get to have a say in? Because you should have a say in a lot of it. I mean, yes, it’s a program that you will have to fit into, but feedback should always be welcome. It should always be welcome. And do you know how and who to go to that if you have an issue or if you don’t know what to do or if you feel uncomfortable about something, how do they handle those situations?
Mike Carr (07:25):
Let me dive into a couple things you’ve said, which I think are really important and share some personal examples of this. So before Johnna became involved, we had the University of Texas for six years help us with our program. And we didn’t have quote turnover because the students were getting credit and they would come in for a semester or two and work with our son and collect all kinds of data. And we had special ed students and speech folks and all kinds of different departments involved. And there was natural turnover at the end of the semester, but we have a few that would want to return after the semester was over. But what’s happened since the culture’s changed and since we’ve really emphasized culture is a lot of people want to return. And we’ve got two or three colleagues right now that are in nursing school and several have graduated and they still come back.
(08:11):
And even though it’s one day a week, the joy, the juice, the culture is such that they don’t see that in their current job and they don’t get it anywhere else. And so not just looking at turnover, which I think is super important, but what’s the sense, what’s the feel of the environment and how many folks have come back or are still there, even though they have something else that maybe is going to pay them more money. And I think that’s an important part of the conversation is pay. And one of the things that I’ve learned is culture is not solved by
Johnna Oppermann (08:44):
Pay. No, no.
Mike Carr (08:44):
People do not work in this space because they’re going to get rich. You can make more money doing a lot of other things. That doesn’t mean you can’t pay them a bare minimum wage. So we have stipends, their bonuses. There are other ways to supplement whatever the base pay is. So it is a reasonable amount and there’s enough joy and excitement and just feeling that I’m making a huge difference in people’s lives and I’m really important, which every one of our team members are, that’s what creates the low turnover and the retention rates. And Johnna, I don’t know if you have any other thoughts around compensation and pay and that mix, but it’s something that every parent has got to think about, especially if you’re going to try to do something on your own, which we tried for a while and it is so hard because you have no career path, you can’t have the backups and you have the backups to the backups and all the other things that you need.
(09:37):
But there are some things just to think about with compensation. Johnna, I didn’t know if you had anything else there.
Johnna Oppermann (09:42):
In my experience, really, like a raise or a bonus, once you are at a living wage, like a wage, a fair wage that’s a living wage, beyond that, it may be at the very most last three weeks, the high that they get from that. That is not going to keep people. It’s not. I mean, paying a living wage is the base, right? Really, people leave or stay at a job for personal reasons. They’re driven by them. It could be location, it could be the management, like leadership, it could also be room for growth, either horizontal growth or vertical growth within the organization, or it could also be opportunities for growth even within areas that they are passionate about that may serve the organization well. So again, it’s a relational thing. And so really getting to know and establishing trust with your staff and that they have opportunities to grow, then they see a future and they want to be a part of it.
(10:40):
And their experience and the quality of experience that they have is a direct correlation to the quality of experience the families and the participants have.
Mike Carr (10:50):
There’s some ways to think about this that I’ve come to learn that were not at all intuitive or obvious to me. And it’s about being the authentic you. And I’ll give you a couple of concrete examples. So a lot of the gals wear jewelry and nice clothes. We’re getting graduate level students or we’re getting professionals in some cases, but in our environment, jewelry is like a target, at least for our son. If it glitters, he’s going to pull it. He’s broken necklaces before and everything else. So we ask them, take it off or not wear it. And then in some cases, they’ll wear baggy sweatshirts just because depending upon whom they’re with, there might be some pinching going on. It tends to dissipate pretty quickly if there’s not a reaction, but if it’s a pinch on a bare skin, it hurts a lot more than if it’s pinching through a thick sweatshirt.
(11:34):
Well, that makes everyone look less attractive or more homogeneous. All the jewelry’s gone. Oh, perfume, no fragrances, right? Because some of our guys and gals, they’re very super tactile oriented or super smell oriented and they’ll pick up on that scent and they’ll want to be right next to you and it just causes all kinds of problems. So you have to change what you wear and what you put on when you’re here. And that’s a bit disconcerting at first, right? You want to look nice and you don’t want to come across as like you just got out of bed. And that’s not what happens, but it’s this willingness to not wear the jewelry or not have the greatest looking outfit on or to dress a little bit differently because you know you’re going into an environment where there’s certain triggers. And one example that happened, I think it was this week is one of the gals changed her hair color to bright orange and it set one of the guys off.
(12:27):
And we didn’t know why. We didn’t know at the time what was going on, but he had a very negative reaction to this bright orange hair. So either you change your hair color back or you wear a scarf or a hat or something, right? You don’t know this ahead of time, but you have to have a willingness as a staff member to change whatever that trigger is so that you can still work productively and engage with the community. And that’s just accepted. And I think this is, Johnna, a part of what you’ve been able to help us build with this culture is that people get it. It levels the playing field. Everyone’s wearing the same stuff. Everyone doesn’t have jewelry. Everyone doesn’t have cologne on if it’s a guy or a perfume if it’s a gal. And so everyone is sort of feeling like, “Hey, I’m the real person.
(13:09):
I’m not trying to hide behind fancy clothes or jewelry.” And there is something that I think that’s very helpful and almost spiritual when you get a team of folks together and all the facades are gone because everybody’s there for the same reason, which is to serve the community members. And I don’t know, Johnna, if you have any other thoughts along those lines, it’s just an observation that I thought was interesting and very counterintuitive, but something that you can see when you walk into any new program. And if you see some folks dressed to the nines that are interacting with special needs folks, to me, that would be of concern. I don’t know.
Johnna Oppermann (13:41):
Yeah. I think it depends on the environment, right? So it’s interesting because one of my philosophies is you want these invisible supports for their dignity and their own sense of pride for themselves. And so if everything is covered in, “Hey, I have autism signals,” that also creates an outcome. They don’t necessarily rise to the occasion. But I think that you wouldn’t necessarily notice that because they still look really nice. They’ve just modified it. But again, that goes back to they understand that the success of this individual or the success of these individuals are our mission. That’s the heart and soul of behind what we’re doing and everyone is willing to do whatever it takes because that’s the option. There is no option of like, “Oh, well, they don’t work out like, no, this was our commitment and what does success look like? ” Which is, I mean, we have discovered that there are personal things that people have done, staff have done or worn or whatever that we’ve had to change because we have guys in the program who don’t understand that this is a whole new world of working with these cute 20 something girls and they’ve had to do different things so that they are not sending the wrong signal to some of the higher functioning guys.
(14:59):
And not that they were doing anything terrible, it just you sometimes have to modify the way you dress or the way you do things so that it doesn’t bring out the worst in somebody. So I
Mike Carr (15:10):
Want to end this episode here. We’re going to have one more episode. So part three is going to be next week and that’s where I’m going to ask Jonna to take off the gloves. I’m sure one of her most challenging clients I came into this program, I’m an A1 driver, control freak. I like to micromanage. I have zero patients, at least I had zero patients. And I think dads, you guys in particular, and even moms that tend to be more perfectionist, that tend to like to have a schedule with time, deadlines, and make sure things are done the same way day after day. There are a lot of learnings that I’ve gone through. So the final episode that we’re going to do next week is Jana beating me up and telling me all the things that I’ve done wrong and then how she’s helped me learn.
(15:53):
And it may not just be me. I mean, I think we’ve had other folks in the program, but I’m probably one of the biggest challenges that Jana has faced. So thank you for listening to us this week and please come back next week when we take the gloves off with Jonna Opperman. See you guys. Bye.
