Autism Programs: Red Flags Parents Must Never Ignore with Johnna Oppermann

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.