The Harsh Reality: Most Respite Programs Just Don’t Get It
I’ve been there. I’m Mike Carr, and when your kid gets older and bigger and their needs get more complex, suddenly every door starts closing. “Sorry, he’s not a good fit.” “We don’t have the staffing for that.” “Maybe try somewhere else.”
My son’s 35 now. He’s nonverbal, uses his iPad to talk, has seizures, and he still has accidents. He’s also 5’11” and pretty strong. When he gets frustrated and you don’t catch the signs early enough, things can go sideways fast. The typical respite setup that works for grandma? It’s not set up for kids like ours.
Here’s what we’re dealing with that nobody wants to talk about: real aggression sometimes – punching, biting, hair pulling. Communication breakdowns that make everything worse. Medical stuff like seizures that scare people. And our kids need everything to be familiar and predictable, which makes any new place feel impossible.
Key Points
- Most respite care fails adults with profound autism—J13 builds around their needs, not against them.
- Day programs and community outings ease the transition before overnight stays.
- Low staff ratios and trained teams ensure safety, dignity, and growth.
- Real respite means peace of mind for families and independence for adults.
Why We Started Over in Austin
After getting turned away one too many times, we decided to build something different here in Austin with the J13 community. Our whole thing is this: nobody gets kicked out for behavior. Period. Instead of trying to fit square pegs into round holes, we actually build around the behavior.
That means when you call us, we want to know everything. The seizures, the aggression, the weird food stuff, the sleep issues – all of it. Most places want you to downplay the hard parts. We want the brutal truth because that’s the only way this works.
And here’s the thing that really matters: We put your kid’s safety and dignity first, not what’s easiest for our staff. Sounds obvious, right? But you’d be amazed how rare that actually is.
How We Actually Do Respite Care for Autism
We don’t start with sleepovers – that’s backwards. We start with day programs out of the same house where they’ll eventually sleep. So when bedtime comes, it’s not some scary new place. It’s where they hang out with their friends.
And we’re not sitting around some facility all day. We’re out doing real stuff in the real world. My son might be at Crux climbing gym working his way up that wall, or at the pool, or outside with the horses. There’s always staff who know how to set him up for success and handle it when things don’t go perfectly.
The best part? Watching him get excited when he knows he’s going back for the weekend. That laugh he does when he’s packing his bag – man, that tells you everything. We’re not trying to “fix” his autism. Instead we’re working with it and finding ways to let his personality shine through.
His superpowers? Basketball, making everyone laugh, and somehow getting the other guys off the couch when they’d rather just zone out. Your kid has superpowers too – we just need to figure out what they are.
The Nuts and Bolts That Actually Work
Staffing – It’s All About the People
You’ve got to start low – one-on-one, maybe work up to two or three kids per staff if the mix is right. We pair my son, who needs more help, with someone who’s a bit more independent. They’ve developed this whole big brother thing that’s just amazing to watch.
Training never stops. Crisis prevention, seizure stuff, how to handle pica safely, restraints we pray we never use. And every single person on staff has to learn how each person communicates. My son uses TouchChat – everyone knows TouchChat. Because when he can’t tell you what he needs, that’s when everything falls apart.
The House Makes All the Difference
Having our own place changes everything. We’ve got cameras in the common areas, sensors in the hallways, locked food storage because of the pica stuff. Multiple quiet spaces when someone needs to decompress. And we thought hard about where to put the loud activities so we don’t tick off the neighbors.
Our 15-passenger van is our lifeline – freedom to go places, flexibility when plans change. Though honestly, we need a second one.
Building Trust the Right Way
We learned to start small. Summer camps, half-day visits, let families see how we work before anyone sleeps over. Nothing sells our program better than watching your kid’s face light up when they conquer something they thought they couldn’t do.
The parent community matters too. When you find families who get it, who aren’t afraid to be honest about the hard stuff, that’s when the magic happens. We cover costs together, share what works, and finally give each other what respite is supposed to be – actual peace of mind.
What to Look for in Your Area
When you’re checking out respite care for autism programs, don’t just listen to the sales pitch. Ask the hard questions:
- What happens when my kid has a meltdown?
- What’s your crisis protocol look like?
- Who’s actually going to be working with them, and what’s their background?
- How do you handle communication devices?
- What about medical emergencies?
Look for places that want all the details upfront, not the ones that say “oh, we’ll figure it out.” Check if they actually go out in the community or if it’s just warehouse babysitting. And pay attention to how they talk about behavior – are they building around it or just trying to manage it?
The house setup matters. Separate place, not some borrowed classroom. Safety measures that make sense. Staff who stick around long enough to actually know your kid.
The Real Deal: What This Looks Like When It Works
Here’s what we’ve got now: adults who are safe and known and actually enjoying themselves. Parents who can go away for a weekend without their phone glued to their hand waiting for the crisis call.
And honestly? This whole thing is the best practice run for residential living down the road. The skills they’re building here – routine, relationships, managing their own stuff – that’s what they’ll need to be successful on their own someday.
Don’t Give Up
If you’ve been hearing “Not a Good Fit!” over and over, I get it. It’s exhausting and heartbreaking. But don’t stop and keep looking. There are programs out there designed FOR our kids, not despite them. The right culture, the right training, the right setup – it can turn “you don’t belong here” into “Welcome Home.”
Because when severe autism finds real community, families finally get to breathe. And that’s what we all deserve.
Transcript:
Mike Carr (00:04):
If you’ve ever been told, I’m sorry, her child isn’t a good fit. Then this episode’s for you. I want to talk about a different kind of respite, one built for adults with severe autism or multiple IDDs. I’ll share a bit of our son’s story and why we help start the J 13 community here in Austin, Texas, and how we’ve shaped respite to be safe, growth oriented, and believe it or not, something that our guys actually look forward to. Then I’ll end with a practical checklist you can use to evaluate respite options where you live. When most people say respite, they’re thinking about short-term relief for caregivers of seniors or the elderly. Now that model assumes relatively low staffing needs, predictable outcomes and quiet homes. If you’re parenting an adult with profound autism or other special needs like those with profound autism, you already know that’s simply not our world.
(00:58):
For instance, our son’s 35, he’s nonverbal and he uses an iPad to communicate. He has seizures and pica behavior. Bedwetting happens, and if you don’t know how to read him, if you miss the cues, his behavior can escalate quickly. Now, he’s five 11, about 170 pounds, and he’s pretty darn strong. So to feel safe for him to grow, he needs a trained colleague with him from morning to night. A typical outside the home senior respite setup just doesn’t even scratch the surface of what our son needs and probably your adult severely autistic child needs as well. So here’s some of the things to consider. Intermittent, sometimes intense aggression, punchy biting, hair pulling, can the respite program you’re looking at, address those things. Communication differences that drive frustration. Many folks like our son need an augmented communication bias to be heard, co-occurring medical needs like seizures and swallowing risk or sleep issues, and almost all of them need familiarity and routine and structure, which makes any new place a pretty steep climb.
(02:01):
So we started with a different promise, a different premise than what you’re typically going to see in the respite care probably in your community that’s tailored more for seniors or the elderly. First of all, no one gets kicked out for behavior. We build for behavior. That means a thorough intake, brutal honesty on both sides, and a culture that puts your adult child safety and dignity first. Instead of what’s just most convenient for the staff, it means developing protocols for the hard stuff, training constantly and refusing to shame the person who’s struggling in the moment. Peter Drucker said, culture eats strategy for breakfast, and that’s what our program’s all about, building the right culture. You can have great plans, but if the staff doesn’t believe this person belongs here, the moment things get tough, doors close At J 13, belonging is simply non-negotiable. Here’s what we learned works.
(02:53):
You start with a day program that launches from the respite house, that house becomes a positive association. There are friends there, the routine’s there, it’s fun before anyone sleeps over our days, aren’t spent cloistered on a campus or locked in a room most of the day, rather they’re out in the community. Our whole crew’s out in the community. It might be an adaptive climbing gym like Crux climbing centers or outdoor parks with swimming. If it is indoor, it might be a trampoline venue where there’s lots of bouncing up and down or outside again with healing with horses. And of course there’s basic vocational practice that goes on in a lot of these venues. Most importantly though, everything’s always tailored, always supported. Think do real life in real places with staff who know how to pre-teach, how to prompt, how to reinforce, and most importantly, in some cases, how to deescalate.
(03:40):
Once trust is built between participants, between the staff and parents, then overnights can begin because the house already feels familiar the first night less of a cliff, it’s much more of a gentle step forward. Our son now actually gets giddy when he knows he’s headed back for a weekend and the way he laughs when he is getting ready to go. It’s just so cool. It’s just you’re doing the right thing. We don’t try to erase autism. We don’t try to erase your child’s challenges. We accept them and we amplify their strengths. So our son’s superpowers include basketball, an infectious laugh and a talent, believe it or not, for getting his buddies off the couch out of their chairs and into the day out into the community. And your adult child has superpowers too. Lemme state that again, your adult child actually has superpowers and we are going to discover those and we’re going to help build on those.
(04:30):
So that’s our job to notice them, to build a program around them. Then to rechannel the tough behaviors, the aggressive stuff so it doesn’t get in the way of them building on their strengths and their opportunity to grow. Here’s some of the nuts and bolts of what we’ve learned the hard way. Staffing. You’ve got to start with a low ratio, like one to one, maybe two to three, maybe three to five with the right mix of skills and personality. Then we might pair someone like our son who’s higher support with someone that’s moderate support and they develop this big brother relationship and it’s really cool to watch how special that is. And we train relentlessly in crisis prevention, seizure response, pica protocols, even safe holds you hope you never have to use. And then each person’s special way to communicate and let’s talk about communication.
(05:12):
Everybody speaks in some form. Everybody communicates in some form. It can be verbal, it can be gestures, or perhaps it’s through an iPad. So maybe your child uses prolo quo, our child uses touch, chat, whatever the app is, the staff have to learn it. Communication isn’t nice to have. It’s a safety plan and it’s the biggest way to moderate frustration and avoid meltdowns. How set up a separate house changes the game. And we put the cameras and the motion center sensors in the shared areas. And of course we use the locking food storage medication protocols. We provide multiple sensory safe spaces for calming. We set up outdoor activity zones where the noise is going to trigger neighborhood complaints as far as transportation, we have one 15 person van right now, but that’s probably not going to cut it, so we’re already planning to fundraise for a second.
(05:57):
As trust grows, so does your radius and vans equal freedom and equal flexibility, and they often equal fun. So we want to prevent, we can’t go because we can’t get there ever happening on-ramps. We’ve had luck with the short test drives. We did several three weeks summer camps this last summer or even a half day visit to sort of show parents and the transitions coordinators at schools how this works before the overnights begin. But the progress, the grin on your kids face when they’re just five feet up, that climbing wall at a crux climbing gym that’s going to sell itself. You’re going to be amazed. And then of course, the community of parents build a critical mass when several families share the same values and the same honesty. You can cover cost, you can share wisdom. You can give each other the real gift of respite, which is time and peace of mind.
(06:44):
So here’s the outcome. We see adults who are safe, known and engaged parents who can exhale, who can take a weekend away or even a week long trip because they trust the team and they trust the plan. And yes, this is also the best rehearsal for residential living later. The muscles you build in respite routine relationships and regulation are the same muscles you’ll use for a successful move out. If your experience of respite has been a series of closed doors, please don’t give up. Look for the places that designed for your adult child, not around them. The right culture, the right training and the right house can transform no fit here into this home is for you. This home is your home base outside of your parents’ home because where severe autism finds community families find rest. Now, I’m going to take you through the respite program checklist.
(07:37):
We’re also going to provide a link in the show notes where you can download this checklist if you’d like. And this is broken into several sections. So section one’s philosophy and culture, no expulsion for behavior, period with a clear written crisis protocol that you can review thorough intake that invites full honesty about aggression, seizures, pica behavior, elopement, sleep, et cetera. Our intake process is unlike anything any parent’s gone before and several parents have told us how much they appreciate it. I can’t believe you’re asking all these questions, but I know why you’re asking them, and I really think this is going to make a difference. Okay, strength-based programming. What are your kids’ superpowers and how are they used daily and how can we lean into those? And always dignity first, deescalation over punishment. Words of encouragement instead of, no, no, no, no. Okay. Second group staff and training.
(08:31):
Initial low staffing one-to-one. Maybe you ramp up to two to three or three to five depending upon the support needs of your child. And then of course you compare a moderate support person with a higher support person. And that brotherly relationship or that big sister little sister relationship develops and it’s magic to see what they’re able to do together. Look for credentials and lived competence. BCBA involvement, special ed, IDD experience, seizure and PICA training, et cetera. Augmented and alternative communication. Literate team. Every staffer has to be trained on each person’s device, the apps they use and their core vocabulary because they’re never exactly the same, right? Ongoing drills, crisis prevention, medication errors, elopement, nighttime response, bedwetting protocols, et cetera. Okay. Now in the health and safety space, medical readiness, what are the seizure plans? How are meds administered? Where are the logs? What are the safeguards for pica behavior?
(09:23):
Are there environmental sweeps done to make sure things aren’t just sitting around that could be eaten quickly and swallowed environment? Is the food secured? Are the chemicals locked away? Are the motion sensors in the halls working? Are there chimes on all the points of entry or exit transportation, reliable vans, driver training, and then elopement, aware, loading and unloading routines, documentation, incident reporting, parent notifications, trend reviews to improve plans. Then the overall program design. We think it’s just hugely important. You start with the day program, consistent outings in the community, not campus isolation. Everybody gets to know everybody else. And then a predictable structure, but with flexible supports, different types of schedule, visual schedule, ways to encourage choice, making, natural reinforcement, multiple activities, zones, quiet room, active room, outside areas, and it’s easy to switch when different things happen and you need to move someone outside to have some fun on the basketball court.
(10:15):
They’ve got a little bit of extra energy or maybe into the quiet room if they’re getting a little bit overstimulated. Sleepover on-ramps. Gradual exposure to the house before that first overnight. And then of course, familiar staff at bedtime, home and neighborhood, A separate house associated with positive routines, not just someplace that’s got sort of that rental feel or a big institutional feel. Noise aware layout in displacement of active spaces relative to the neighbors. And then practical modifications, right? A locking fridge, locking pantry, locking everything in terms of what’s in the key kitchen, safe drawers, durable furnishings, wipeable services, and then technology that helps not surveillance, right? So cameras in the common areas, alarms that cue the staff without screaming loudly or sirens going off, and then the residents are upset or shaming residents, family partnership, transparent policies, what the program can and can’t handle when they call you, call them how they review incidents. And then data and debriefs, regular updates on wins, on the triggers on the progress, and what adjustments can be co-planned with the family as everyone progresses on this journey. And then a community among parents, shared values, mutual support, and then realistic expectations for growth. If a program can walk you through these items with specific examples, not just platitudes or slogans, you’re on the right track. Next week I’m going to talk a little bit more about our vision for residential. Have a great rest of your week. See you.
