A Future for Adults With Profound Autism: Inside 29 Acres with Debra Caudy

Mike Carr (00:06):

Well, welcome everyone to another episode of Autism Labs. And to continue our discussion with executive directors and folks that run residential programs, some of the best residential programs in our opinion, certainly in Texas and arguably around the country, I wanted to talk about 29 Acres today, which is just north of the Dallas-Fort Worth area. I believe it's in Denton, Texas. And I'll let Debra tell you a little about herself, her background, and the journey she's been on with 29 Acres. And then we're going to get into some really interesting conversations about residential and perhaps even residential for those that require a little bit more support than some of the other folks that are out there. So Debra, please introduce yourself.

Debra Caudy (00:46):

So my name is Debra Caudy and I am the mom to a 29-year-old individual named Jon Jon who has autism and he has profound autism. He does not have functional language and pretty much requires 24 hour supervision. And he's been my north star throughout this whole initiative. He is the very reason why I and others have gone forward with this movement. So my journey started about 10 years ago, maybe a little longer than that, and just worrying about what's going to happen to Jon when he's no longer eligible for the school system. And in the Dallas area, I looked around and just to be honest, there was a scarcity of both programs that would accommodate his needs. And there was essentially no housing that I thought would work for him. So my mission going forward was let's create some safe housing and some quality support services for individuals with autism and other neurodivergencies and other disabilities.

(01:52):

I started working across the nation and aligning with other movers and shakers in this space and went and visited lots of programs and made some good friends in the space and eventually came up with the concept for 29 Acres and on we went. We also had a lot of listening groups in the DFW area. And while I knew my son had found autism and my family had a need for housing and support services that could support him, I also learned that we have many other needs in our community for people that have lower support needs. They're not necessarily being more successful either. So when we began to really put our concept down on paper, Mike, we knew all along that we were going to support the full spectrum, that there was essentially so little opportunities for people with profound autism, but even our guys and gals with lower support needs weren't necessarily successful either.

(02:50):

We also knew that we were going to look at both a real estate opportunity as well as a suite of support services that was designed to meet the needs of a broad range of neurodivergency, neurodevelopment disabilities. That was very intentional to keep the real estate separate from the support services because we knew we had to have that to be able to use the HCBS waivers. And we knew we wanted to use the HCBS waivers, especially as they apply to individuals with higher needs because their care is very expensive.

Mike Carr (03:22):

Our son is 36 years old, so he's a little bit older than Jon. And we've been on this journey too for a few more years perhaps than you've been on. And we've gone around the country and looked at programs and there are a lot of programs that say they might be able to handle someone that has the needs of someone that's profoundly autistic or severe autism or level three autism, but they're not used to it. It's more of the exception than the rule. And to have a program where you really are accommodating your son's needs and you recognize, hey, there are other folks out there that are lower support, that are higher functioning, and sometimes pairing them together creates more vibrancy and a more exciting environment than just having a community or residential and non-residential programs and services for just one type of autism, just the lower support.

(04:08):

What have you learned there? And I'd be very interested in what you've seen as advantages, Debra, to including not just level one or level two that are lower support, but then also folks that are profoundly autistic with others that maybe don't require as much in the way of services.

Debra Caudy (04:25):

Well, I think we've proven that it works in our model. We have always been that way. And we opened up during COVID in 2020, we've always had about a third of our clients are high needs. A third are low needs. They drive cars, they work closer to 30, 40 hours a week, and then a third are in the middle. It's just a very, very beautiful thing. And now some of the lower support needs guys, they don't seek out somebody like my son who can't talk to them. Many do, and they'll help him, they support him, they come back to me and they say, "Oh my gosh, Debra, your son did so good at rollerblading today." And so I do see a lot of compassion in our lower support needs folks that like to help and have compassion for people who can't speak and really who have a hard time advocating for themselves.

(05:25):

And they don't always feel so wonderful about themselves at times.

Mike Carr (05:31):

So

Debra Caudy (05:32):

I think they feel some sense of comfort in understanding that others have barriers as well. So it's probably not for everyone and not for every parent. Some parents of lower needs clients will have nobody with a higher need in the vicinity. But when it comes actually down to the person with the neurodiversity, it really works very, very well. And this has just happened with us organically. So we like that. We like that. And for somebody like my son, just engaging with different people and different groups of people. Some people are talking, some people are singing. He just likes it. He likes it. He seems to enjoy it. So just community of this broad range of neurodiversity or autism, I just think benefits everybody, benefits everybody in the community. And sometimes again, the lower support needs will help support the folks with

(06:34):

Higher

(06:34):

Needs.

Mike Carr (06:35):

You mentioned waiver dollars. And so we've run into the same problem in Austin where we have some parents that have the HCS waiver dollars or they have the class waiver dollars or maybe they have other waiver dollars. And there's always this concern of how can I use waiver dollars for certain services for residential? Where can I not? Do I have to open the doors to everyone if the nonprofit, for instance, becomes registered and a group home? And you guys also have done something else, Debra, which we think is super exciting is that you have multiple homes very close to one another. And so you've been able to come avoid, I think, some of the restrictions that we've run into down in Austin that while they have to be fairly far apart unless you go through a whole different licensing process. Is there anything that you've learned in particular about how to use waiver dollars that maybe is not known by many parents or is exciting news?

Debra Caudy (07:34):

So a couple of years ago, and 29 Acres was instrumental in getting the TAC changed. There's a misconception in Texas that any kind of intentional community or any community that might appear to be isolating in nature, that you can't use HCBS dollars. And that's just not true. You can, we do. You have to go through a heightened scrutiny process, and that's what we helped to insert into the TAC law a couple of years ago. And we passed heightened scrutiny very easily. So we have 10 homes here. Three of them are certified to accept HCBS funding, and we are an HCS provider. We're the provider for those residents.

Mike Carr (08:21):

We'll

Debra Caudy (08:21):

Probably open a fourth home pretty soon. And so it's doable. Now, we didn't have any restrictions about how close the homes were. Obviously we had to have the ADA accessibility a factor, but we declared ourselves, we are an intentional community and come see what we do and we'll pass heightened scrutiny. And we just never had any problem going forward. Our problem has been more the reimbursement rates for HCBS funding in our more profoundly affected individuals who are the ones that need it the most really, right?

Mike Carr (09:02):

Right.

Debra Caudy (09:02):

And Texas, I am ashamed to say that Texas does not acknowledge people with more profound autism. They don't, period.

Mike Carr (09:14):

One of the things that we're trying to do, and we just completed a fundraiser down here, we don't have a residential program. We're much newer than you guys are. We have aspirations to do some of the cool things that you've done, but we are trying to raise some of the rates that we pay our staff so that they can live in Austin, which is a very expensive place to live compared to other parts of Texas. And in doing that, it's like, well, we can give them a stipend for some extra stuff. We want to make sure that they don't work more than 40 hours a week without getting paid overtime, all the rules and regulations that apply there. What have you discovered in terms of things that you can do besides just, hey, you're going to make X dollars an hour because that's the limit that we're allowed because of state regulations to either provide more compensation or provide an environment or other types of incentives where you really can recruit the best people and keep the best people once they're at 29 acres?

Debra Caudy (10:17):

Well, staffing is the tough nut to crack. That's the hardest part of all of this, right?

Mike Carr (10:21):

Oh yeah.

Debra Caudy (10:22):

Hands down, hardest part. And staffing barriers plague our industry. And there's many, many layers to it, obviously. The $13 an hour, whatever the state, the blanket increase that the state did a year ago or a year and a half ago is not a livable wage. So we pay the medium range for behavioral technicians, life skill coaches in our area. And I think we just increased our hiring to 18.50 an hour if you have no experience. And then it goes up if you do have experience.

(11:01):

And we feel like that's competitive. But I think it's not all about pay. It's about a lot of staff appreciation, just acknowledging people that this is not an easy job. You have a passion, you're good at it, and we really appreciate you for that. Training is a big piece of it, and that's why we have so many BCBAs on staff is particularly when you're working with individuals that could hurt you, they're profoundly affected, they could punch you or they could hurt themselves. The staff need to be properly trained and they need to feel confident in that training so they don't walk off the job. So we put a lot of effort into training as well. We fundraise. I mean, most of our fundraising dollars, to be honest with you, well over 50%, probably 60, 65% of our fundraising dollars go towards the higher needs individuals because they're very, very expensive to support properly and Medicaid does not nearly cover the cost of it.

(12:13):

And most people can't afford that. Those are big dollars. They can't afford that. So we don't charge what we actually spend taking care of somebody with profound autism. So I don't know. And I've spoken with others that do have daytime programs that exclusively work with profound autism. They all fundraise. They just can't charge the parents what it costs and the state reimbursement rates usually don't cover the cost. So I have just come to realize it's not a bad thing. I wish the state of Texas would pay for what it actually costs. And I think we're going to get closer to that and I'm going to keep fighting for that. I think it even goes beyond that. When you look at the costs of behavioral therapy and one-to-one staffing ratios and the HR hiring needs and all the training that goes into it, it's just expensive.

(13:11):

So I think it would be hard to do if you were not a nonprofit, to be honest.

Mike Carr (13:16):

Oh yeah. So tell us a little bit about what a day and what a week looks like at 29 Acres, the activities that, especially the higher support, the more profoundly autistic folks engage in and what data, what metrics you guys collect to sort of ensure that, hey, it's not just keeping them safe, which is what a lot of parents that we've started talking to have had to do because that's sort of the lowest bar and they're at home, they're by themselves and they're safe, but that's not a fun, flourishing, joyous life.

(13:46):

No. So what have you guys done and how do you do it and how do you handle that aggressive behavior? We try to tell folks that, look, we start with yes. So we're not going to start with no, but we're going to spend a lot of time making sure we understand what are the antecedents to a behavior, what's going to set somebody off and try to make sure our staff's prepared. So if somebody's fixing to go off the handle, we know that they're going to yell or they're going to do something that's inappropriate and we can intervene and hopefully keep them safe and protected as well as the staff. Any stories or any guidance there?

Debra Caudy (14:17):

I just think that you have to meet people where they are. And before somebody moves in to 29 Acres or even enters our day program, you do a very, very thorough intake process. They come here for a trial. We go to their house and spend a day or two. We go to all their environments, their school, their day hab, their house, they come to us. It just is a long drawn out process, but it's really important because we need to see everybody and they need to see us in different contexts. Everybody's day looks different. My son's day looks different than his roommate's day, and I help him design his life. So he's a pretty active guy. So he works a couple of days a week, just an hour at a time, but he's had the job for three years and they love him. I'm looking for a little bit more employment for him.

(15:05):

He likes to go to the library, others don't. So he goes to the library. He's a physical guy, so he'll work out. We have a trainer on site and he'll work out or he'll go walk the bike path. And other people like to play games or they like to do puzzles or they like to go to movies. So we really try to keep it consumer directed and just so everybody's day kind of looks a little bit different. Now, logistically, that's a nightmare. So we can't meet everybody's needs seven days a week, but we get as close as we can. And that's the vision. The vision is independent living, not assisted living. It's independent living where the resident is in the driver's seat, they're the consumer. And our job is to support them to be able to live the life that they want to live, live the life that they want to live.

(15:58):

But it's their lives and they're making those decisions or their parents are. So everybody's day looks different, but we're pretty active. We have some good partnerships with university. We use their pools, their gyms. We have a lot of parks around here. We do some boating in the summertime, lots of trails. Again, we have good libraries here. We have some nice adaptive rec opportunities here, good music therapy. We have somebody that spends a whole lot of time designing offerings to our residents and their parents, and then they decide what they want to do, and we try our best to make that happen. And some people are looking for jobs or have jobs, and others are working on the prevokes. Opportunities aren't ready for jobs. So some people, a few people horseback ride, so we take them to the stables. My son doesn't like horses, so he doesn't go.

(16:51):

So it's pretty consumer directed, although we can't meet everyone's needs seven days a week.

Mike Carr (16:58):

Let's talk about independent living for someone that's profoundly autistic. So our son, just like yours, is not verbal. He can't speak. So he uses his iPad and he's very visual. So we have page after page after page of icons, and he can flip through all the icons very quickly, but he will pick, if we let him, only the things that he really wants to do like cake, cake, cake. He loves to eat food, but he's also very active, so he likes to go on walks and play basketball. So what we try to do is set up... Kay sets up a visual schedule at the beginning of the day, and he has choices. He sees all the things that he's supposed to do that day, and it may be laundry and it may be putting his clothes away and this and that. And then usually it's an AB choice, right?

(17:35):

Okay, Michael, you get to do this or that. So he still has some agency in what he's doing, but over the course of a day, he still is accomplishing certain life skills tasks, whether it's brushing his teeth or getting dressed, and he might put three pairs of underwear on the outside of his shorts, but he'll still do that. And then there are other things that if he's had a good morning or whatever, okay, well now we get to go to the pool or now we get to go down to the park or whatever it is with some of his buddies. How do you guys handle giving Jon the choices that he wants, but not allowing him to "plan his day so he never does any of the things that are important for him to grow and learn and live more independently that he's maybe not quite as excited about."

Debra Caudy (18:16):

And in reality, they have so little control. It's sad, right? But we want them to feel like they have the control. But in reality, sometimes you don't. The bed needs to get made or the laundry has to be washed. So we'll say, "Okay, which do you want to do first? We got to do some chores. Do you want to vacuum or do you want to do this one?"

(18:36):

That's how we do it. We have to do chores and then after a meal, there is no choice. You got to clean up after yourself. You don't get a choice there. You don't get a choice going to the doctor. Sometimes we have to do things that we don't want to do. And then for the leisure, the rec, I give my son three or four choices. And I think if he's rotely manning for something, I will just ask the staff and his behaviorist knows to take it off. Just don't offer it. If he's over selecting rotely, just take it off and don't offer it. We try to have him still have the amount of control that he can tolerate, but obviously we have to contrive it to get him to explore new things. And he doesn't get to do his iPad twenty four seven. He does have to help cook a meal and he does have to do some things that you and I have to do as well.

(19:25):

It's that balancing act between you don't really have a choice here, buddy. I just can't give you the choice. You can pick which chore you want to start with, but we're going to do them.

Mike Carr (19:34):

You have

Debra Caudy (19:35):

To do them. And then I just try to contrive his choices for foods and for leisure activities because I know he'll go to the same thing too. He'll go to a muffin every single time if it's on his choices, on his written choices. So I don't offer the muffin very often. I offer other things or his staff. I don't do it.

Mike Carr (19:58):

Hey guys, we're going to stop this episode right now with Debra up at 29 Acres and continue next week because she is a wealth of knowledge. And especially for any parent that's watching that has a profoundly autistic son or daughter, you've already gotten a sense because Debra's son, who's 29, is profoundly autistic. She gets it, right? And the fact that a third of their homes are for that higher support level three severe autism is super exciting. So please come back next week as we continue this conversation with Debra.