Autism Labs

Autism Respite Care: What We've Learned Building a Program for Adults with Severe Autism

• Autism Labs Community • Season 4 • Episode 25

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In this episode of Autism Labs discussion between Mike Carr, Allie Langan, and Sharon Holloway regarding respite care programs for parents of severely autistic adults. 

The key points from the transcript include:
- Getting individuals with autism and other disabilities out into the community is important, as it helps educate the community and can lead to community members becoming supporters of the program.
- Respite care programs can provide much-needed breaks for parents, allowing them to attend family events without fear of their child disrupting the gathering. 
- Transitional transportation is crucial, as a dedicated van with trained staff can help mitigate behaviors and facilitate community engagement. 
- Avoiding isolation and promoting peer interaction is key, as it can help individuals "level up" their skills and independence.
- Finding the right jobs or volunteer opportunities that match an individual's interests and abilities is important for their sense of fulfillment and independence.
- Sustainable funding models that include both donations and parental fees are necessary for the long-term viability of respite care programs.

Mike Carr (00:04):

Well, welcome back this week as we continue part two of our episode with Sharon and Allie concerning respite care for parents of severely autistic adults and other folks too. So hopefully you look forward to it.

Allie Langan (00:17):

Another thought I think we were kind of discussing too, as far as funding. Those donations are great if we can get in the community, get people involved in our mission and what it is that we're trying to do. But do you have any suggestions for maybe grants or anything outside of the community that could be helpful?

Mike Carr (00:35):

What we have found, and we have just started the grand jury, so I can't say we don't have a history of applying for grants or seeking grants, but in talking to folks that have done this before, I think getting the people you serve out into the community is so important. There's no reason to be embarrassed. A lot of these programs, especially for the folks that are more needy, that have higher support needs like our son, it's a heavy lift to get them out in the community because you dunno what they're going to do. They could start screaming, they could have a meltdown, they could steal somebody's food, they could punch somebody. So there's a natural predisposition for a lot of the programs that sort of keep them cloistered in a campus like setting. Now it might be a beautiful campus, you might have multiple homes, you might have an on-campus facility, but they're not getting out of the community.

(01:17):

And what we have found is getting them out in the community. People learn to understand, oh, well they're just like me. They just have a few challenges, whether it's a speaking challenge or some other challenge, and they're the folks then that can become your supporters. And so when you go then and apply for a grant, what I think a lot of the people we've talked to are interested in is not just that you're serving this particular population, but that you're also educating the local community on how important it is to not just accept this population, but that they're really fun to be around and that you can help them without a lot of effort. Like the people at the climbing gym, it doesn't take much effort when you're resting to go over in belay a special needs guy or gal for five minutes and you're going to have a whole lot more fun doing that in many cases than belaying a neurotypical individual.

(02:03):

So it's a way to introduce the community to a population that has historically been shunned or been a little bit more isolated. And the foundations that we've started conversations with, love that, right? It's this idea that it's multiple benefits. They want to look at how many people you're serving, and we always talk about how well we're serving the community member like your guys' sons, but we're also serving their families. Think about how big a deal it is now that mom and dad can take a vacation after a hard week at work and a hard week at home, taking care of their kiddo who's aged out of the school system and now they can take a break and breathe a sigh of relief or even family get togethers. We've not been able to take our son to certain family get togethers because they were at a very formal setting and it was going to be disruptive, and so it was going to create so much concern.

(02:50):

Even if he didn't do anything, people would sort of be on their toes waiting for Michael to misbehave. It was just easier for us to say, look, we're not going to join you for Thanksgiving. And this idea that you have a respite care program where your son or daughter might be happier and have more fun on a holiday with others going outside and not having the big Turkey dinner, but going to Chick-fil-A, who knows what, right? And then you can have a more normal, less stressful family activity. Now the ideal, this is what we're working on of course, is once they've been in the program for a while, the behaviors, the interventions are in place where they can go to the family get together and the family is now much more comfortable with them because they've been socialized, they've been out in the community in other settings, and they sort of have been taught how to behave or how to diffuse themselves or how to show signs that they're anxious. So now it's not as likely that you take them to that formal Thanksgiving or formal Christmas activity that they are going to have a meltdown. And so part of getting them out in the community benefits their own learning so that now you can take them to those family get togethers.

Allie Langan (03:50):

I think that is great, that exposure is so important, being able to be out in the community. I know I've mentioned before about the isolation with families because there's a fear of having them out in public and what's going to happen. And I think too, I mean, yes, part of it is the embarrassment. Nobody wants to be the parent whose kid is disrupting the Christmas Center. Nobody wants to be that person, but also just it is hard for them. It's hard, the transition of getting in the car, getting them there, getting them back, all of those things. So I think to be able to have a program where we can develop some of those skills and be able to go out in the community to be able to maybe practice what it's like to sit at a formal dinner, to be able to cook meals, all of those things I think are so important, those life skills.

(04:36):

And to be honest, I think parents like day to day, it's not an effort of not trying, but I think sometimes there's just the limited resources, the limited time, the limited, there's a lot of limitations there. So I think it's definitely a huge benefit when programs like yours can get them out in the community. I love that idea and I think that's something that we definitely want to strive for is having them out in the community, developing some of those life skills, developing some of those social skills. And I think one of the things that we ran into as a possible barrier would be the transportation aspect. Do you recommend, do you have a vehicle that transports all of your individuals or do you just have them assigned? It's like, okay, so parents we're dropping off here today. What do you do for those types of situations?

Mike Carr (05:19):

Great question. So we do have a van. We have a Ford Transit 15 person van with a very tall top. So you can walk in it, you don't have to hunch over. Do have parents that drive, they drop their kiddos off at our starting point and then we load 'em all up in the van and we take 'em someplace, whether it's the climbing gym or a trampoline park or an outdoor venue where they can do some hiking and we try to mix vocational skills and with recreational skills and life skills or whatever throughout the day. We did not purchase the van new, but it's our prisoner van, which seems a bit off-putting to call your van the prisoner van. But the reason we call that is we actually bought it from a dealer who had leased it to the Texas Department of Corrections. So it literally was used to carry inmates around in the state of Texas for the first year and they had 75,000 miles on us.

(06:07):

It was a used van, but it's relatively new and it's really decked out. I mean, we were not looking at vans that had all other seats like this van has or the surround sound system like this van has, the Texas Department of Corrections evidently has a lot of money and so they bought some really nice wheels for that population. So what's really worked well is we get everybody on the van and even though it's a 15 person van, you can't put 15 guys and gals in there if there's any behavior. So we might have 10 or 12 folks in there with the staff. And then the trip itself is fun. So there'll be games that we play, there'll be karaoke singing. So we have a mic that they pass around, and since it has a surround sound system, you can hear them throughout the van.

(06:51):

And so it makes it part of an entertainment throughout the day that, okay, we're going to go from this place to this place. It's a half hour ride. Who wants to sing this time? Who wants to play the game this time? You don't want to have them in the van for hours, but a 30 minute ride with the right staff and the right structure and programming in place can make that a big deal. The problem we ran into this year was we were on the way someplace and the van started making rumbles. It wasn't going to go on much longer, so they pulled off and they fortunately were right next to a park. And so we had lunch early, our staff backup, we always have backup, you have to have your primary staff, then you have to have your backup staff. So the backup guy was called, he immediately went down.

(07:34):

We already had in place a protocol to rent a van and made arrangements in advance. He goes, you always need to think about this stuff. If you've got a van and you're relying on the van, what happens when the van breaks down because it will break down. And that's what happened. And so before the lunch was over, he had the rental van there and the rest of the day sort of proceeded as normal. Right now we're fundraising for a second van. We need the second van as a backup. We also need the second van because now we're at capacity. And so now we've got parents lined up wanting to participate and can't. We don't have enough capacity in the one van. I think having transportation to help you get out in the community is hugely important. I think while you can do it individually with smaller vehicles, it's not as much fun and you don't have the ability to put the kind of structure in place to mitigate behaviors to improve chances of success. It's a liability issue too. If you've got three or four people driving their private vehicles around versus one vehicle that's licensed commercially and everyone's sort of trained on what to do if certain things happen, it's just a safer environment. I think for everybody. The

Sharon Holloway (08:34):

Transportation aspect is part of the isolation. That happens as well too, because if you are, I work in a whole different city. I am 35 miles away from home. So if I can't get there quickly, we can't go. So the ability to transport our members or potential clients at that point in time would be something that's very important. I will say, I can revert back to the isolation piece. So one of the things that I dealt with as a parent, my own self, with my own household, is not only the isolation because of not being able to take Elijah certain places because when he was younger, yes, that was definitely a challenge. We had to adapt quickly and wherever I go, he goes for the most part, also the limited family resources in the area. I have older parents. My parents are in their mid to late seventies. They are my backup caregivers. So one of the things that we always have to consider is the ability for young adults kids to be able sustained even outside of that environment. So I did have a question about on your respite care and even your day-to-day process, do you have young adults that are moving towards an independent living type situation?

Mike Carr (09:48):

Oh yes. Yeah. And that's the ultimate goal. Our ultimate goal for our son is full-time residential, 365 days a year, 24 hours a day. I mean, because we can't take care of him forever. And we're getting to the point where we are thinking about what if something happens to one of us or both of us and we can't do that. So the whole point of what we try to do, and even if you guys aren't thinking about it, one of the huge benefits, this is another reason back to getting grants that I think is an important part of the message, is we're preparing these folks not just to have hopefully a more joyful, fun, fulfilled life because they're getting out in the community and they're engaging with people, but also to learn those life skills so they learn they can live as independently as possible when mom and dad can no longer take care of them or their grandparents get to be too old to provide the help when needed.

(10:37):

And the sooner you start tackling that, our experience has been the more success you're going to have. We've seen kids our sons age now that much higher functioning than he was, and they had a lot more potential, but their parents didn't have the financial resources, the wherewithal to do everything we were able to do, not because we were just smarter. We were just lucky and fortunate enough to be able to do that. Their son or daughter right now is in a much worse place. They don't have the same skills that Michael has. They're not able to live as independently. They can't dress themselves, they can't do all these other things. And it's really sad because they probably could have been so much more independent, had the programs, the therapies and everything been put in place. And Sharon, you bring up a really important word, and it's not a word we've talked about yet, it's isolation last thing.

(11:19):

And I think one of the key tenets of our program is we do not isolate folks. We want individuals to be not just with other folks that have maybe some similar diagnoses as they do, but maybe even some of the folks that are a little higher functioning. We've seen almost these big brother relationships type develop. Like Michael has a couple buddies that can speak a little bit better than he can and they'll get him to do things he won't do for anybody else. He has fun doing it and they rib one another, they jive one another, just like young, 20 something year old guys, three something year old guys would do anyway. And so that's just hugely important. So where each one of those individuals by themselves might be much more isolated together, they have more fun, they tend to misbehave less because they're engaged.

(12:05):

There's peer pressure to act a certain way. So the peer pressure actually helps mitigate behavior that if they were isolated, they might exhibit more of. And it also prepares them for ultimately residential because sort of used to learn, used to living with or engaging with others. So that's a really important point and something that I think any program in this space hopefully is going to reduce the amount of isolation. And that's not to say if there's a meltdown, you don't want to remove the person and let them sort of chill out by themselves with some help. I think that's been a very effective strategy for us is to, before some behavior really gets to the point where it's a safety concern. You sort of help someone take a walk with someone or remove them from the movie theater or the bowling alley and they go outside for a few minutes until the noise is so noisy inside or whatever, that they calm down and then hopefully they can get back into it. So that to me though, was not isolation. That to me is more of a very intentional, let's remove them from whatever's causing the anxiety, the concern, the discomfort for them, let them calm down and recalibrate and then bring them back into that community setting.

Sharon Holloway (13:12):

Absolutely. I would have to agree with that 100%. Not to dominate the topic, but Elijah himself and other athletes that I've coached, I could speak most specifically about Elijah because when he first started with Special Olympics and being engaged and involved with other athletes that were older than him, specifically older than him, that he actually started notching himself leveling up, growing, and now he's just gone

Mike Carr (13:35):

To

Sharon Holloway (13:36):

The point where when we go to competitions, I'm good. And he pause, he's up with his fellow athletes. He has a best friend that is a few years older than him and the two of them are blood brothers. You wouldn't even know that they came from separate DNA, but they literally, they buddy up and they do everything together. And Elijah, because of it, he has stepped up his language. He has actually been able to pull more words out, even through repetition or even a spontaneous speech because of there's nobody, I don't want to use the word dummy down, but there's nobody talking at lower level to him because they know he's limited speech. They're actually still articulating to him the same way as anybody else. And he now is pulling more at 22, almost 23 years old. So leveling up, I believe 100% is a product of your environment and if you put them in the right pool of success, there's nothing that these kids can't do.

Mike Carr (14:29):

Leveling up is another keyword that you mentioned for all the Elijahs out there. And I think even more importantly for the parents, we've met so many parents whose kids have aged out of school, they didn't know what to do with their kids, so what are they doing? They're at home by themselves, often in their bedroom on the computer playing games or who knows what they're doing. And mom and dad are okay with that because they're safe and that's the best they can do because they've been kicked out of other programs or they don't have the financial resources to get them enrolled in something else. So instead of leveling up, they've leveled down, right? They've lowered the bar to the point where as long as they're safe. And that is so disheartening. Whereas if you do exactly Sharon, what you're talking about and athletics is a great example of this. Any team sport is a great example of this. Once they get involved in a situation where they are challenged in whatever way that might be, it could be coordination, hand to eye coordination, it could be shooting a basket batter, it could be bowling, it could be pickleball, whatever that is, they start to grow, right? And everyone, we have not seen a single individual that has not shown parents surprising potential to the point where it brings tears in some of the mom's eyes

Sharon Holloway (15:36):

Where

Mike Carr (15:36):

They said, I never knew my son or daughter even knew what that was. Or even with life doing that. And boy, when you achieve that, then we know why we're all doing this. When you can create that kind of joy for the parent and that kind of environment for their child to succeed and grow, you're on the right path.

Sharon Holloway (15:54):

And the next level of independence is being able to work, whether it be volunteering or working for day. Fortunately, bless God, Elijah has a job. He's two days a week, two hours a day, and he spend his own money. Not everybody know that, but we want to kind of follow that environment that the life skills are such in place that if they decide they want to go and get a job, they can't go get a job.

Mike Carr (16:15):

The Texas Workforce Commission took one look at him, said he was unemployable

(16:19):

And he was able to get a job at crux climbing gyms cleaning, which he actually enjoys doing. I mean, so you need to sort of find the thing that your son or daughter likes doing, and I'm not saying cleanings for everyone, but Michael liked repeating a task, and so he just enjoyed doing it, whether it was mopping the floor or cleaning the little cubbies or cleaning the windows, and he was making almost double the wage that he was used to making another jobs. He was making more than minimum wage at this job and he enjoyed it. I think everyone is born with a desire to feel fulfillment, and that fulfillment can be done through team sports. It can be done through social interactions. It can also be done in a job if it's a job that they enjoy, that they get some sense of accomplishment from just cleaning a table. There's not a speck of food on it or sweeping the floor boy, getting them in that role. They can often be better employees than a neurotypical person that gets bored doing that, and they really not. That's not really for them.

Allie Langan (17:11):

I think that's so true. And just kind of finding their niche, just finding the thing that they really love to do. And I love that you said that too, that okay, he likes things that are repetitive, so let's put him in something that is repetitive. That's great. And I think too, another thing with having the opportunity or a place for social skills and life skills, I combined, it's like, oh, I've never tried before. I didn't know that I like this. So then you kind of learn new skills and different things that you like that you didn't know before. So I think that is amazing. And finding the right thing because it's just not a one size fits all. So not all jobs, not everybody being the bagger at, we have Publix, so I'm sure some other, I dunno, you have a Kroger or whatever, which Publix is great, a great company that hires a lot of individuals with disabilities.

(17:56):

I love Publix, but that's not for everyone. Not everyone is meant to work at Publix. Not everyone is going to enjoy being a bagger or pushing the cars at Publix. That's not for every individual. So I love that you mentioned that too and just kind of finding, I think what it is that they like learning different things that they like that they never knew that they liked before because our preferences change all the time. So I really like that you said that and just finding the right thing. And also jobs may not be for everyone, so I like that. You also mentioned Sharon volunteering could be something too, so maybe it's not a job. Maybe there's something they like. I have a couple individuals I work with that love animals, so they like to go to the animal shelter and volunteer and it definitely gives them a sense of purpose because they get to play and be with these dogs that they're in a cage all day. So it's very fulfilling for them and fulfilling probably for those dogs too. Another thought I had was kind of just back to the funding. The biggest thing, it's like we want to get this started, it's just kind of knowing how are we going to pay our staff? How are we going to really get the ball rolling as the nonprofit, do you just have the donations, just the fundraisers, and that's how you pay the staff? Or is there a charge for parents for them to use the respite care?

Mike Carr (19:08):

Great question. And we want to try to make the operational side of the program net neutral. We do want to be able to charge enough so that staffing costs can be covered. Now, not necessarily all the fixed costs, so like the facility itself, maybe we cover some of that through fundraising or donations, but the day-to-day operations, the staff's wages is something that we feel is pretty important to show the viability and the sustainability of our program to our donors and to our fundraisers and to our foundations that it's not just based upon donations because you don't know. It's not something you can count on year after year. And so it's very hard to build a program and convince parents, especially when you think about residential, that we're going to take care of your kiddo for the rest of their lives when you can't. And our revenue model is all based upon donations.

(19:58):

There needs to be enough in the way of tuition or fees or room and board charges, and that's tough because it's not inexpensive. So we don't yet, we have offered a couple scholarships for summer camps where we'll want to write some of the costs, but we're still so small that we're trying to charge enough to cover that. And then we certainly have donations for the van purchases and that kind of stuff. We're still sort of in a startup mode, and so you can get donations, I think when you're in startup mode for staff recruitment and training and putting processes and protocols in place and all the tech support you're going to need. But at some point, I think it's real important to have a model where you have different revenue streams and one of those revenue streams, the direct care where parents are paying for it.

(20:44):

Another revenue stream might be education for parents or consulting that you provide as just because you guys are going down this path and you're maybe a little bit further ahead of others. We're thinking about that. We haven't done it yet, so I can't say that's going to be successful. And we're almost out of time. So what I'd like to suggest is that I think the journey that all of us are on would be worth sharing periodically with our listeners and viewers, right? I think you guys are going to learn stuff and you're going to have new questions come up, and I'm certainly learning things and I've got all kinds of challenges and things that we've done wrong that we've learned from coming up too that maybe, I don't dunno if it's once a quarter or however often we get back together and we just sort of have another session like this, if you guys would be up for it, where we sort of continue the conversation about, Hey, we found this new funding source, or, oh, we've got this new approach to athletics and teams and Special Olympics. It's really worked for us well in Florida. Maybe it's something you guys, I don't know if you guys would be game for that, but I certainly would be interested. Absolutely.

Allie Langan (21:39):

I think we're both on board with that.

Mike Carr (21:40):

Is there one final question or is there one key takeaway that either you'd like to ask or that you'd like to leave with the listeners and the viewers just as something to think about before we get together? Again,

Allie Langan (21:52):

I just want to say thank you so much for this collaboration and I'm really just looking forward to the next line. We get to chat and just seeing where we all are on this journey together, and I think we're doing a wonderful thing for individuals and families in our communities.

Sharon Holloway (22:05):

Thank you and everything for this opportunity. This has been an amazing conversation. Parents don't give up. It's coming. It might not be what exactly you think it might be, but it's coming. Blessings come in all different forms, shapes and sizes. So just be open, be willing, and know that there are people in this community that are truly working to make this world a better place for this entire community as far as the IDD and special needs community. Yes.

Mike Carr (22:32):

I think that closing on that ray of hope, that there's light at the end of the tunnel, regardless of how tough the journey's been for you to date and maybe the difficult situation you're in right now. No one can do this alone. We all have to do this together and none of us are doing this because we're making money. This is our ticket to the gold, the pot of gold at the end of the rainbow. We're all doing this because we both have a need ourselves perhaps, or we're trying to serve others and together I think we can accomplish so much more. So thank you guys so much for your time today and until next time everyone, please enjoy Thanksgiving, which is coming up. It's actually tomorrow. We're recording this on the Wednesday before Thanksgiving and certainly the holidays after that. Thanks again.

Sharon Holloway (23:06):

Thank you. Happy holidays.