Autism Labs

Respite Care for Autism: A Parent's Guide to Life Skills Training and Support Programs

• Autism Labs Community • Season 4 • Episode 24

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In this episode of Autism Labs, Mike Carr, Sharon Holloway, and Allie Langan discuss the importance of respite care and life skills programs for autistic and neurodivergent young adults, emphasizing early, consistent, and individualized support to bridge gaps between home, school, and community settings. They highlight how tailored programs, physical activity, and structured social interactions help manage behavior and foster independence, while acknowledging the challenges parents face in finding safe, supportive environments. The conversation also covers starting a nonprofit, securing 501(c)(3) status, and leveraging multiple funding streams, including Medicaid waivers, insurance, donations, and community resources, to sustain programs. Innovative staffing solutions, such as university interns, religious volunteers, and niche community groups, are shared as ways to enhance program quality while promoting engagement. Overall, the discussion underscores the value of building strong community support, early intervention, and personalized strategies to empower both individuals and families navigating the transition to adulthood.

Mike Carr (00:05):

Well, welcome to another episode of Autism Labs, and today we're going to talk about something that I think a lot of you are going to be interested in, which is respite care and life skills, training and getting your kiddos ready for living more independently and hopefully providing some respite care for yourselves so you guys can get out and do a date night or go on a vacation and not have to worry about is my son or daughter being well taken care of? Are there any safety concerns or any trust issues? All that kind of stuff. So I have two very special folks on this particular podcast. Sharon, I'll let you introduce yourself first and then we'll switch on over to Allie. So Sharon, tell us a little bit about yourself and your situation.

Sharon (00:43):

Good morning. So my son is 22 years old. His name is Elijah and he is on the autism spectrum. We moved down here to Florida about 10 years ago, almost 11 years ago, in the middle of the sixth grade. So as everybody knows certain states, sixth grade is elementary school, some states it's middle school. He had already advanced to middle school, had to go back to elementary school. So it was a little bit of a challenge in that environment. What we dealt with as residents of Florida is just the resources portion of trying to get him through the school system and even beyond the school system as well too. Elijah's primary diagnosis was pd, D-D-N-O-S with a significant speech delay. So through that and going through the school system and even beyond schools now because he's almost 23 now, has been just getting him involved in the community. We do Special Olympics. I'm a coach, he's an athlete. Yay.

(01:38):

We participate in other local organizations. We try to stay busy in that. So in the process though, I've met many families that are much like my own. I'm a single mom, but there's other families just like my own, where the kiddos have kind of aged out. They are past the reach of their parents even in some cases and they're just dealing with real life as we know it. So as a parent myself, plus being an advocate in the community for the special needs and the IDD community, I was like, what can we do to help ground and even level the playing field, if you will? So that's basically why I'm here today guys, is because it's a flyaway county in Florida as a state that not has the resources that we had back in Indiana, which is where we lived before here. So I would love to see kind of a little bit more of a boost in the community for our IDD community specifically.

Mike Carr (02:34):

Excellent. Well lots to talk about there. Allie, why don't you share a little bit about yourself and then we'll get into some of the questions and discussion.

Allie (02:40):

Yeah, of course. So I'm Allie. I am a board certified behavior analyst. I've been in the field probably 10 years. I was an RBT, I was a private school teacher. I've done all kinds of different things. I absolutely love our community that we have, and I say autism, but it's really kind of a mixture of different neurodivergent kiddos and young adults. And I think my biggest thing is a lot what Sharon said is just we need more resources in our community. We have limited resources. One thing we definitely are lacking in is life skills. And I have a lot of parents ask me, so what's kind of the next steps? So we go through this high school program, they age out, what can we do next? The answer is there's some job programs they can get into, but not everybody's ready for that. So not all clients, it's not a one size at all.

(03:31):

Not everybody's ready or has a skillset to go and get a job. Not everybody has, everyone's at different levels. There's different skills, there's different needs. So we were kind of just bouncing back and forth the need for that piece in the community. And I lived in Florida my whole life, so I don't have the experience in other states, but I have heard and I've talked to individuals in other states that do have those resources and I'm like, there's such a high need and I think maybe even starting something at a younger age, maybe this is something that can start in a middle and high school age and then go into adulthood, but there's definitely a high need in our community for sure.

Mike Carr (04:08):

Great. So for those of you that don't know, I'm Mike and we have a 30 5-year-old severely autistic son who's nonverbal. So we've been on this journey longer than most folks, which is both good and bad. The good part is we've learned, right, we've learned a lot from the mistakes that we've made in the past that we've gone down and you guys bring up several topics that I'll just quickly touch on and then I want you to have certainly a lot of chance an opportunity to talk about other things. But the sooner you start building a structured program that's consistent between what's going on in the school and what's going on at home and weekends and holidays, the better. And that seems obvious, but so many of the BCBAs, the RTBs, all the folks that we've dealt with over the years, the other parents we've talked to, one of the problems which they often maybe don't realize is there's this big gap or this inconsistency between what is going on in the classroom and then the techniques, the therapies, how you handle behavior, and then what's going on at home.

(04:54):

And I'm an offender. Mom was really good, my wife was really good at making sure that she did all the things and that she actually was very proactive and even getting to school to do certain things certain ways. And then I come home from work and I just want to have fun. And so I sort of throw out all the, well, no you don't. Don't a response if the behavior's inappropriate, you don't bribe them with goodies just to get them to do something you want, which then tends to just sort of ruin everything that the teachers have been working on, the BCBAs have been working on. So part of what we've learned is, and I've learned is that if I'm consistent with what our son experiences during the day and it hit his respite nights, then things go much better. He doesn't take advantage of me and we have a lot more fun together. So why don't you guys start with anything that you want to talk about or discuss or ask me and let's just take it from there.

Allie (05:37):

I think kind of the biggest thing is we're looking at two different things. We're looking at the respite side of things, which is very important because all parents need some kind of a break. Kids need a break from their parents. I think that's very fair thing. I think Reed is very important for us to be able for parents to be able to take care of themselves. And then I think the other side of that is the life skills are also very important because everybody needs life skills for life. The biggest question, Mike, is how you got started with your nonprofit organization and that's something that we're looking we're interested in doing.

Mike Carr (06:10):

Great question. And it also goes back, Sharon, I think some of the challenge that you've had with Elijah and some of the things that you talked about briefly was the thing that is by far the most important, the key to success is to really tailor the program to each individual participant. No two neurodivergent folks where they have an autism diagnosis or some other diagnosis are exactly the same. And while a lot of the procedures and techniques do work well across a lot, if you don't tailor them and if you're not aware of behaviors that will set someone else, set one person off, but it's sort of funny and exciting to somebody else, it's a recipe for disaster. I'll give you a couple of examples that are real life examples that have happened recently. So we have about oh 10 to 12 folks in our day program, our nonprofit day program, many of whom are respite and several of 'em have the same exact diagnosis and one guy really likes to come in and stir up the group.

(07:03):

He'll take a hat off one person and joke around and steal it and some of the guys whose hats he steals think it's funny. So they'll smile and they'll jostle with one another because they know this is just part of what's going on. But there's one guy that really is pretty protective of that hat. So sure enough, one morning this guy comes in and steals the big guy's hat and the big guy was not happy about that. So what's the big guy do? He smacks? Well, smacks and our crew didn't have a chance to intervene. We weren't quite as aware as perhaps we should have been that look, we know this is a behavior that's probably going to happen when the first guy shows up and we know there are a couple of our other guys or gals that don't appreciate him stealing their hat or stealing whatever it's they have.

(07:40):

So let's make sure that we are right there to prevent that from happening and to redirect that behavior. So I think that's one of the things that's made our journey on this nonprofit successful is that we've tried to be very aware of and spend a lot of time talking to parents about tell us about your ghetto, right? Tell us about everything you've seen that they get joy from that makes them happy that we can use as positive interventions or positive things for them to do. And then also please share with us as embarrassing as it might be, things that do set them off or behavior you're not proud of but you haven't been able to correct. The more honest a parent is with us or with you guys as you go down this path, then the better we're all going to have at understanding upfront, here's some things that might happen. Here are the triggers. Now let's make sure we create an environment where it's less likely for that to happen or if it does happen, we're already ready for it and we're not going to be surprised and run the risk of somebody getting smacked or bitten or kicked or whatever it might be.

Sharon (08:37):

I completely agree with that. I mean Allie, I know as a professional you definitely understand that even my day-to-day with Elijah and in coaching, because I'm dealing with all types of personalities coming in and we're getting all kinds of age groups and I coach tennis hook with pickle ball bowling, it could be something as serious as the ball didn't hit the racket just right. You know what I mean? And they're in a whole different direction. So you're absolutely correct. You have to go in through the door and understand them from who they are before you can do anything from the bottom up playing those groundwork skills, whether it be life skills, athletic skills or anything else with that. I agree completely.

Mike Carr (09:15):

One of the things, Sharon, that you mentioned that I think is super important that we've learned is physical activity helps a lot mitigate behavior, right? Sitting at a table, what happens in schools for hours at a time, especially for this population that doesn't necessarily understand or engage with traditional forms of learning just doesn't work. So what we try to do is whether it's the pickleball you mentioned, it's not real pickleball and we have a sports court that we poured at our respite house. We couldn't pour a large enough slab for the full size pickleball court. It doesn't make any difference. We've got the net up and they volley and they have fun and they're outside getting exercise and it's not strenuous physical exercise. I mean we have other activities that may be a little bit more strenuous, but just to get outside and have fun with one another and not just learn how to hit the ball but learn how to have fun if you miss the ball or if the ball does hit something that would normally set you off. Those are all life skills in terms of normal social interaction, how to communicate if you have problems with speaking that are really important to learn as early as you can so that when you hopefully are in a setting where you can be a little bit more independent, you can find folks out there that are willing to take you on because you have enough of the basic communication skills and behavior control skills to not be such a heavy lift.

Allie (10:28):

I just completely agree and it certainly, there's different skill sets and I think a lot of times what I find with more profound or level three individuals or those that just have that deficit kind of in social skills and things like that, that it is definitely more of a challenge if we're talking about being out just in a community setting. So some parents are like, I'm really afraid to take them to the basketball court because I know that they're going to take somebody's ball and think that just like you said with a hat, they're going to think it's funny or they're going to do something that would be socially inappropriate or they're going to hurt somebody. So they's a lot of concerns there and I think what would be really great is if we could develop a place where we could help foster that and shape that behavior for those individuals that really struggle in some of those areas. And I think parents, they struggle a lot of times, a lot of families, they're isolated, they feel like I can't go anywhere, I can't do anything. And they feel kind of alone on their journey with their child. And I think parents, the biggest thing parents want to feel is what I find with other parents is supported. They want to feel supported by the community and they want to feel supported by other parents. And I think that everybody should have a place that they could go and that they feel safe to bring their child.

Mike Carr (11:41):

And that's great. And I think in thinking about that support and how you create that trust with parents, that can be reflected in your application for a 5 0 1 C3. So let's go back to that nonprofit question that you asked. So we were fortunate enough to find our CPA was actually someone that helped us prepare the application that we sent to the IRS to get our 5 0 1 C3 status. He actually had worked for the IRS previously. So not only was his CPA in a private practice, but he had had years of experience working for the IRS and he had done work with other nonprofits. So he sort of understood how to craft your mission statement, if you will, which is part of your application. So that it sounded like something that the IRS would not have any problems with. It had enough specificity in it and we actually got approved very quickly and on the first shot there was no pushback.

(12:29):

So one of the recommendations I would make for you guys or for anybody is if you can find someone that's done this before, in our case it was our CPA. It might be an attorney, a special needs attorney or a trust attorney, an advocacy group, disability rights we've used in the past, not to help set up our 5 0 1 C3, but to fight battles with the workforce commission and others so that we could find opportunities and resources for our son. And they often provide services and no charge, or maybe you have a friend that's done several nonprofits, but I think you don't have to have that help necessarily to secure 5 0 1 C free status. But certainly if you have someone in your community that has had success starting a nonprofit and they understand, yeah, we got push back a couple times, here's what we learned from that process. That's sort of the first thing because you need that 5 0 1 C3 before you can really start collecting donations. And before folks are going to feel comfortable donating money, they want the tax deduction. That's one of the benefits. That's probably the biggest benefit of being the nonprofit. So anyway, that's one thing I would suggest.

Allie (13:29):

So one thing that we kind of looked at is med waiver, which is very interesting. So the payout, the reimbursement rate for a life skills program is very low. It would be even difficult to have staff. What I find a lot of times with life skills or adult day programs is that they already have a group home and they just also have an adult day program. So they have both. And then we were kind of looking at, well, if we go the route where we're looking at Med waiver to possibly fund, would we go through insurance? Is it better to maybe have a group home and then have an adult day program or what we really need in our community is a respite program and then have an adult program. So I think we're kind of looking at that side of things too. However, what I found in my experience is the waiting list for Med waiver is very long.

(14:17):

A lot of clients that I've had who I'm like, yeah, definitely go on apply for Med Waiver. Sometimes they're denied. So there's a lot of, I don't know that it reaches everybody in our community possibly that's the way to start. So we're kind of just brainstorming what would be the best kind of way to get funding to start up this program? And I didn't know if you had any insight in using insurance or if you just with a nonprofit and just have those donations. What do you suggest? What would be the best avenue or what avenue did you use for this?

Mike Carr (14:47):

Well, this is probably the key question to how successful is your program going to be? Because the more funding you have, the more resources you can bring to bear. And as we know, this population often requires a higher level of support than certainly neurotypical folks that have some kind of diagnosis like dyslexia. But dyslexia is a pretty easy problem to solve compared to some of the things that we're dealing with. So with respect to waivers, as soon as you can get on the waiver list, the better. Right? In Texas for an HCS waiver, the waiting time, the last time I checked was like 15 years, which means the age out of the school system at 22. So if you're proactive six or seven years old, they better be on that list. Well, how many parents are even thinking about that? Most parents are just so enmeshed in, what am I going to do?

(15:32):

How can I get 'em into that first grade and second grade? You're not thinking about what's going to happen when they age out of the school system 15 years from now. But that's so important. There are different types of waivers too in Texas is the class waiver, which the list isn't quite as long, but the reimbursement levels aren't as high. So what we've seen some parents do in Texas, and I don't know what it's like in Florida, is they'll try to get on both lists as soon as they can. If their class number comes up sooner, then they start getting some reimbursement there. And then if they also see their HCS waiver number come up, then they'll drop class and they'll switch over to HCS because they get more money. Now it's not exactly the same. There's some services that one provides the other, the simplistic version, certainly Social security, SSI or SSID.

(16:08):

You want to have every revenue stream as a parent you can tap into, provide funding and resources for your kiddo is going to be hugely important. And for a nonprofit, it's going to be hugely important too. What we personally do, and we have Michael's, our son's level three, so he's severely autistic, nonverbal, we have seizures, a variety of other stuff. We were on the HCS waiver list for 14 years. 14 years, no movement. And so we finally talked to somebody, I think it was a disability rights, and they said, well, because your son has all these other medical conditions like seizures, you can get an exception and you can get popped to the top of the list. So I wouldn't say for every parent this is an opportunity, but certainly for some parents that you've got multiple diagnosis, you've got IDD, and you've got seizures and you've got PIKA behavior and you've got severe autism, you might have enough.

(16:54):

So even if you're at the bottom of the list, you might be able to get moved to the top of the list. When that happened, then we got this pool of money and we had two basic options. We could go to an existing HCS provider, like a group home that was already set up and let them take that money and use it to the benefit of our son. What we chose to do, what my wife chose to do, who's much smarter and involved in all this stuff than I am, is she went with a self-directed program where she actually was able to take the money herself and hire the folks, but do the interviewing. You have to pay the payroll. This is part of what you know, got to keep track of and she works with the provider, but it gives you that ability then to use the money the way you want to.

(17:31):

So you could go into your program, let's say, and Michael has a colleague with him from the time he wakes up the time he goes to bed because of all the challenges he has. And you could walk in, you can say, Hey, I would like to participate in your respite program. I'm going to bring his support person with him while he's awake and I'm going to pay for myself with my HCS waiver dollars, which is a big green light. It's like, oh man, that's fantastic. And so now we have someone here that's actually going to have someone that can help them be successful and have fun and learn and all the other things. You cannot though take those dollars and give them to you guys, unless you're already set up as an a CS provider. And I don't want to get into all the regulations by no means expert here.

(18:13):

My wife's much smarter at this. And you really need to probably have an attorney or somebody that's familiar with the state of Florida, whatever state you're in. But as soon as you become quote an a CS provider where you can accept waiver money directly, there's a lot more paperwork. There are regulations. And as best we understand is you have to accept all comers. So you sort of have to open your doors. And if someone asks you for a service and you have capacity, then you have to accept them. And it goes back ally to what you were saying, but there's not enough money to pay you the staff, even at the HCS waiver rates to really retain folks. And so some of the things that we've heard about people doing is they'll provide a stipend, right? So they'll say, look, I'm going to give you guys X dollars a month or whatever over and above bringing a direct care person with me, or if I don't need a direct care person over and above paying you whatever the rate is.

(19:05):

And that stipend is to help you provide training and support and maybe bring in staff that are a little bit higher qualified and pay them a little bit more. And there are some restrictions on that. If you're getting waiver dollars, they really don't want you to pay more than the cept or the authorized rate. But what we've heard is there are many folks that do, and there are a variety of ways to do that that don't get you into trouble, but clearly you got to have to be able to pay your staff a reasonable wage or you are going to be saddled with folks that are just there until something else comes along. And that's really not. Now there are some other alternatives, and this is where there's so many creative ways to do this. So think about places you can go, where you can get really high quality people and you don't have to pay 'em as much.

(19:45):

And I'll share a couple examples. Three examples have worked well for us. So the first model that's worked really well for us are universities and colleges. We've tapped into the University of Texas where they had graduate level students that they already got maybe an undergrad and special ed or undergrad in social work or whatever. And now they're getting a graduate level degree in special education or speech or nursing. And part of their coursework was to actually come onsite and work with our population. And we would have monthly dinners where we'd have the professors from UT come in, they'd have their students come in, they were collecting all kinds of data. So they would report as part of their course what they did that month. And at the end of the semester they would actually have presentation on, here's the data we collected. Here's where our son Michael had made progress, let's say on speech.

(20:30):

Here's where he had made progress. Here's the recommended interventions to improve the outcomes where he was having problems. And the next semester another set of students would come in and pick the ball up and run with it. In particular cases, the university will either pick up that tab so that you don't pay anything because you're basically giving them on-the-job, right? It's like an internship that has worked really well. And we did this for six years with UT, and it really made a difference. The students have already sort of made a commitment. They're passed their undergrads, so they've already gotten to the point where they think this is going to be a career, this is a population they want to work with. They're getting course credit for it, so they don't necessarily expect to get paid or if they get paid, not a whole lot, like maybe a more normal rate.

(21:06):

That's one model. The second model is the church community or the temple community. It doesn't make any difference whether you tap in and based on our experience into a particular religious calling, whether it's Christianity or Judaism or something else. But if you find an organized religious group where there are volunteers or people that have already shown a hard force, especially have experience, right? We found that it's very hard to bring someone in that's never worked with this population unless you're willing to do a lot of training and heavy lifting. They don't know what they're getting into. In some cases it depends on what the level of need is. But the church organizations, a lot of people are used to volunteering for churches. They're looking for community outreach programs, missionary type of work in quotes. That's been a good resource. And then the third community, and this is very weird, this is the weirdest of the three, is the climbing community.

(21:47):

So in Austin, there's an outfit called Crux Climbing Centers, and they have a couple of different locations. And I thought this was the most bizarre thing I'd ever thought of. I mean, I thought this was just ridiculous. And it's like a gym. But they go there to climb indoors and you say, why would anyone be predisposed to take care of this population just because they're climbers? Well, here's what I learned as a non climber. In climbing, you have to have someone to blaze you. So if you're climbing what they call the top rope, you have to have a harness on just for safety. And so somebody has to pull that rope and help you up the wall and you get part of the way up and you fall. And so that's a safety thing. Now they have delays, but for purposes of this conversation, it is a community of people where folks are very predisposed to help one another.

(22:27):

It's the culture of climbing. You always have to have someone there helping you belay or helping you with different things that you're doing. They tend to be fairly laid back and chill, and they have a lot of rest time. You climb for a five minutes, you're tired, you've got to rest for five minutes between climbing again. Well, what do they do during the rest time? Well, they'll help somebody else climb. They'll belay them. We started going this just because we thought it'd be a fun thing for our guys to do. And what we found was some of the people that were there would start to come over and want to know who we were, and they started helping us out. It got to the point where they would change their workout schedules. They would ask us, when are you coming next? And then they were sure they were going to be there when we were there.

(22:59):

They got some joy and some fulfillment out of helping us. It was fun. There's noisy and there's smiles and people are doing things they couldn't think they could ever do, get halfway up the wall and they never thought they'd do this. Some of those folks have actually then become staff. We right now have free people on our staff that all were climbers. And I'm not saying the climbing community is the only community. I think maybe whitewater rafting in the northern states has that same culture. We did that a year or two ago in Montana, and the staff was so into whitewater rafting. They would actually sleep in their vans on the parking lot cause they had no money and everybody on the whitewater rafting trips during the summer to save up enough money as they go back to school. So it was a very giving, and I'm not suggesting you hire someone that's going to wander away in a few months, but I do think school's a great source where you can make those dollars that you do have stretch churches, same thing and climbing are three areas.

Allie (23:48):

I love that. I think probably for our community it would probably be surfing. We have surfing community. We don't really have climbing. There's not a whole lot of places to climb for sure. It's surfing for sure. Yeah, surfing. We do have that. But I think those are wonderful ideas.

Mike Carr (24:01):

Well, hi everyone. I just want to let you know we're going to split this session into two parts. Sharon and Ally have so many great questions and the conversation is covering such a variety of topics that we didn't want to shortchange you. So next week we will have part two of this conversation where we'll just continue with these topics. And until then, have a blessed week and we'll look forward to talking to you again next week. See you.