Autism Respite Care: When Home Isn’t an Option

If you’re a parent of a child with autism or another intellectual/developmental disability, there’s a question that probably hits you at 2 a.m. sometimes: What happens when my child can’t live at home with me anymore? I’ve asked myself that question more times than I can count and I know I’m not alone. This week on the podcast, I sat down for part two of my conversation with Nathan Bryant, executive director of High Point Village in Lubbock, Texas, a 17-year-old organization that’s now breaking ground on real, physical homes for adults with IDD. What Nathan shared wasn’t just inspiring. It was a practical roadmap for exactly the fear I described above and I think it’ll resonate with you the way it did with me.

Key Points:

• Respite isn’t a last resort, it’s a bridge. High Point Village uses weekend respite stays to slowly, gently get villagers ready for full residential living, so the jump from “living with mom and dad” to “living on their own” doesn’t feel like falling off a cliff.
• You don’t need to be rich to plan for this. Between HCS/CLASS waivers, tuition assistance and community fundraising, High Point Village says they’ve never turned a villager away for financial reasons.
• Land, sewer lines and half-acre lots matter more than you’d think. The unglamorous logistics of building a residential community, septic systems, home builders, staffing ratios are just as important as the vision behind it.
• A “supportive roommate” model can be a lower-cost entry point into independent living for adults who don’t need heavy medical or physical support, while still giving families peace of mind.

Why Residential Care Is the Hardest Part of the Journey

Nathan said something early on that stuck with me: High Point Village’s founding mission statement put “live” first, then “learn,” then “work.” Live is first on the list and last to be accomplished, because it’s by far the hardest and most expensive piece. That tracks with what we’ve experienced at John13. We’re only four years into this work and we’re already feeling how much harder residential is than day programming. Land, septic systems (High Point is on city water but not city sewer, which means every half-acre lot needs its own septic system), construction costs, staffing, it’s a mountain of logistics sitting underneath a very simple, very human goal: giving your kid a safe place to live a full life.

What Does Respite Care Look Like for Adults with Autism?

This is the part of the conversation that really resonates with me, because it’s something we’re actively doing too. High Point Village runs what they call “Abundant Life weekends” – two-night respite stays where up to four villagers and two staff members go do everything from basketball games to manicures to grocery runs. Nathan described one weekend where he filled in for a sick staff member and ended up buying cereal and Little Debbie snacks for a “guys weekend,” like he was back in his college dorm.

At John13, we do something similar, just at a different scale. We start families at our day program house, then move to weekend respite in a familiar setting, then eventually longer respite stays, the idea being that by the time a full residential placement is ready, the transition feels natural instead of terrifying. Nathan confirmed this is exactly the philosophy behind High Point’s new respite house: it doubles as a training space (their day program building doesn’t even have a bedroom or living room to teach in) and as the on-ramp to residential life.

When Your Autistic Child Can’t Live at Home: How the Transition Actually Works

Some villagers may eventually be required to complete a few respite weekends before moving into a permanent home, specifically so staff can learn their morning routines, bedtime routines and general rhythms before taking on full responsibility for their care. That’s not bureaucracy for its own sake, it’s how you build trust and safety into a transition that’s already emotionally loaded for everyone involved.

My son is 36 and when he knows he’s headed to respite, he gets genuinely excited, sometimes more excited than he is about staying home with us. That could sting if you let it. But Nathan reframed it beautifully: Special needs parents grieve differently and on a different timeline than other parents. I grieved when my son didn’t get his driver’s license at 16. Nathan is grieving his son’s high school graduation right now because there’s no “applying to college” moment coming. But when your child gets excited to go live somewhere safe, supportive and full of friends, that’s the same grief (and same blessing) neurotypical parents feel when their 18-year-old moves into a dorm. It’s just been waiting longer to arrive.

What Can You Do When Services Don’t Exist Yet?

If you’re in a smaller city or a region without a High Point Village or a Brookwood nearby, Nathan’s story is still useful, because 18 years ago, High Point didn’t have any of this either. It started with $700 a month day programming and 18 years of “putting money away, putting money away, putting money away,” as he put it, until a single generous family gift pushed them over the threshold to finally build. My advice, echoing his: Don’t wait for the perfect, fully-funded solution to appear. Start with a day program. Start with a single respite house. Build slowly and let the community around you catch the vision as you go.

How Does Funding Actually Work for Respite and Residential Care?

I know this is the part everyone actually wants the details on, so here’s the breakdown Nathan gave me:

• Roughly 40-50% of High Point’s 70 villagers are on some kind of Medicaid waiver (HCS, CLASS or Texas Home Living), which reimburses tuition for day programs.
• Waiver villagers often still pay something extra, since High Point provides more than the six hours of ISS the waiver technically covers.
• Private-pay tuition is kept intentionally low Nathan mentioned Reach High’s rate is close to $700/month, historically pegged near the lower SSI benefit amount so a family living on SSI alone could still afford it.
• High Point fundraises roughly two-thirds of its annual operating budget every single year to keep costs down and pay staff fairly.
• For residential: they won’t run traditional group homes. Instead, they’re using a “supportive roommate” model (inspired by Best Buddies’ program at UT Austin) that provides reminders and light support, not medical care, at a lower cost than full-support residential settings, which Nathan says can run $4,500-$5,000/month elsewhere.
• Families can apply HCS host-home or companion-care dollars toward an attendant or even toward a mortgage if they build a home in the village themselves.

What You’ll Learn From This Episode

• Why residential care is almost always the most expensive and hardest-to-build piece of an IDD organization’s mission
• How a structured respite program can serve as a “trial run” for full-time residential living
• What a “supportive roommate” model is and why it’s a lower-cost entry point than traditional group homes
• How Medicaid waivers (HCS, CLASS, Texas Home Living) can be applied to both day programs and residential costs
• Why staffing backup plans (and backups for the backups) matter more than almost anything else
• How grief shows up differently and sometimes beautifully for special needs parents
• Why building slowly, in a specific community, matters as much as building big

Notable Quotes

“We want to create a village where these folks can live first and then learn and then work. It’s the first on the list, the last to be accomplished.” – Nathan Bryant (02:25)

“Everybody’s like, dude, you’re going to mess up… but there’s something else we’re going to mess up. I just know that’s the case and we want to do it well.” – Nathan Bryant (06:57)

“We’re not going to have a requirement that every villager that lives out here is a part of our programs.” – Nathan Bryant (07:38)

“Your child, your loved one’s going to be taken care of… we’re committed to maintaining ratios that make sense with people that are trained.” – Mike Carr (16:30)

“He gets super excited. He actually would prefer to be at respite than with us.” – Mike Carr (17:02)

“We literally, I don’t think we’ve ever turned a villager away for financial reasons.” – Nathan Bryant (19:53)

“You do realize God loves your child more than you do… he also has a plan for them when you can’t do that.” – Nathan Bryant (27:18)

“What a cool thing for you to now have the opportunity to grieve like those parents did when their kids turned 18.” – Nathan Bryant (29:10)

Resources & Links Mentioned

• Nathan Bryant – Nathan’s email (nbryant@highpointvillage.org)
• High Point Village (highpointvillage.org) – the Lubbock, Texas nonprofit at the center of this episode, offering day programs, respite and now residential housing for adults with IDD.
• Betenbough Homes – the local Lubbock home builder partnering with High Point Village to offer discounted homes on the residential campus.
• Best Buddies “Supportive Roommate” Program – the model (launched at UT Austin) that inspired High Point’s approach to lower-cost, non-medical residential support.
• Marbridge (Austin, TX) and Brookwood Community (Houston, TX) – established residential communities for adults with IDD that Nathan references as long-running examples in Texas.
• 29 Acres (Denton, TX) – another Texas residential community for adults with autism/IDD, run by “Deb,” referenced as a mentor organization.
• Texas Tech Burkhart Center – a two-year transition academy for young adults with IDD that High Point hopes to partner with on housing.
• John13 – my own organization, referenced throughout for comparison on day programs and respite structure.

Timestamped Outline

• 00:04 Recap of part one and introduction to today’s topic: respite and residential
• 01:38 Why residential is the hardest, most expensive piece of the mission
• 02:25 The history and philosophy behind High Point’s 63-acre residential campus
• 05:13 Breaking down the 24 lots, septic requirements and the first four homes
• 06:20 Explaining the “supportive roommate” concept
• 08:48 How respite acts as a stepping stone toward residential living
• 10:26 Nathan confirms the respite-to-residential transition strategy
• 13:39 Why owning a respite house (instead of renting Airbnbs) changes everything
• 17:40 Talking through waiver dollars, private pay and tuition assistance
• 26:15 Nathan’s closing advice to parents and the conversation on grief

FAQ

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Transcription

Mike Carr (00:04): Well, welcome back everyone. Last week we started talking to Nathan Bryant, executive director at High Point Village in Lubbock, Texas, about their 17-year journey, the 70 villagers they serve and their move into respite and residential care. If you missed part one, take a look at last week’s episode. This week, we’re diving into respite and residential. So here we go.

What’s so awesome about what you said, Nathan, is the two sides of the coin every parent wrestles with. There’s the challenge of selecting a program where, number one, your kids are safe and the program can accommodate their special needs whether that’s seizures, being nonverbal, traumatic brain injury, physical limitations and everything that comes with those.

(00:50): But at the same time and this is what’s so cool about what you guys are doing we also want to enable them, prepare them, help them learn how to get out into the community and get a job at Old Navy or HEB, even if someone’s there supporting them, so they can be a productive member of society.

We have two grandkids in Lubbock, so we spend a fair amount of time there and it’s a community with real old-world charm the way families were raised when I grew up 50 years ago. It’s not a small town; there are hundreds of thousands of people, so there’s plenty of variety in employment and activities. But the culture and spirit of the people is warm, welcoming and accommodating in a way that’s hard to find in bigger cities like Austin, Houston, or Dallas.

(01:38): I want to talk about residential now, because that’s what’s so exciting. We’re not nearly as old as you guys. We’re only four years in and you’re 17. We’re starting to realize how hard residential is and you’re much further along. You mentioned you’ve got 20 lots and four homes under construction. Can you share where you are on that residential journey, your philosophy and what it would look like for a family that’s interested, maybe even willing to move to Lubbock given what you’re building?

Nathan Bryant (02:25): Absolutely. When I talk to some of our original board members, the ones who helped write the mission statement, I tell them they did a great thing putting “live” first on the list: we want to create a village where these folks can live first, then learn, then work. It’s first on the list and the last to be accomplished by far the most difficult and most expensive.

I’ve had great conversations and been warmly welcomed into this community of leadership by other organizations across Texas. It’s a good reminder when I go down to Austin and visit Marbridge on the south side of town, I’ll talk to their director, Scott and he’ll say, “You realize how long we’ve been around? This wasn’t accomplished in five or ten years.”

(03:12): Same with Brookwood. I grew up in Katy, so Brookwood is right down the road and visiting a place like that can be overwhelming. It makes you wonder what you’re even trying to do. And yet I know West Texas families even if they had the means to place their loved one at Marbridge or Daymark in Dallas or 29 Acres. My family actually lived in Denton for a while, that’s where my son was born and I watched 29 Acres come up as he was growing up. Deb runs it and she’s awesome. I’d love to see my son there. But all that to say: we also want to create something in West Texas.

(03:51): The Panhandle needs more of these opportunities and honestly, everywhere does. There’s something unique about living here, about families wanting to stay close to their loved ones. What we’ve developed in just the last year is phase one of a residential community. We sit on 63 acres of land isn’t our problem. But we have other challenges. We’re technically part of the city of Lubbock, so we’re on city water but not city sewer, which creates some unique dynamics for development.

Building anything is expensive and one of our core values is stewardship as it should be for any nonprofit. The board and leaders before my time did an amazing job putting money away, year after year. About halfway through 2025, we received an incredible gift from a family who doesn’t live in Lubbock but believed in what we’re doing. That gift put us over the threshold where we knew we could move forward.

(04:30): That gift got us 24 lots on 14 acres, with a large central two-acre lot earmarked for a future amenity and community center. We want it to be the place where residents hang out on weekends, bring friends and where the community can come do things with them too. All 24 lots are at least a half acre, because without city sewer, each lot needs its own septic system and that requires a half acre under the building codes.

We’re selling those half-acre lots and we’re developing four of them ourselves. We hope to break ground before the end of this month, maybe early October now, which I hate pushing back, but as I told the board, we’ve waited 18 years. A month or two more is okay.

(05:13): We’re building four homes: one for staff, one respite home and one four-bedroom home each for men and women. Each can house up to three villagers living alongside a supportive roommate, a concept we learned more about through the Best Buddies program, which just launched a similar setup on UT Austin’s campus this fall.

(06:20): A supportive roommate isn’t providing care, they’re providing support: reminders, nudges, maybe showing someone how to use the stove once or twice. They’re not administering medication or helping with ADLs. They’re there to help someone learn to live as a roommate and live independently.

We’re excited because those first two houses give us a chance to start with six villagers, prove the concept and refine our processes. Everyone I’ve talked to has told me, “You’re going to mess up.” I want to learn from other people’s mistakes so I don’t repeat them. We won’t compromise on safety or villager wellbeing, but there will be things we get wrong along the way and that’s okay. We’re starting small.

(06:57): Some of the remaining lots are now available to families who want to build a house and live as part of the village themselves. We’re not requiring that every villager living out here be part of our formal programs, they might be part of another day program in town, or working jobs. Texas Tech’s Burkhart Center, for example, is an amazing two-year transition academy, but it doesn’t offer housing because its participants are technically employees or interns, not students. So this opens up housing options for families who want to send a loved one to the Burkhart Academy.

(07:38): We’ve partnered with a local home builder, Betenbough Homes, who believes in our vision of another faith-based, for-profit organization that builds across West Texas. They’re offering their homes to us at a discount we can pass along to the first families who buy out here. You can build a Betenbough home for less than you’d pay anywhere else in Lubbock and it’ll be the only one on a half acre, in a gated community, with on-site staff supporting your loved one. Even in the last couple of days, other builders have reached out wanting to do the same thing. My hope is that once these first four houses go up, more families will want in.

Mike Carr (08:48): Talk about respite. We don’t have a residence yet and it’ll probably be a while before we get where you are, but transitioning someone from living at home to a totally different residential setting can be a real challenge. What we’ve tried to do is start with day programming. Our day program is based out of a house a couple of parents purchased and shared with the rest of our community. Villagers get used to coming there with their friends and that’s also where they experience respite for the first time.

(09:32): From there, they move to weekend respite a couple of nights somewhere they’re already familiar with, which helps mitigate the anxiety of spending a night away from mom and dad. Eventually, the goal is extended respite maybe a week so that by the time a permanent home is built, they’re already familiar with the staff and the setup and the transition is primed for success. Is that a pipe dream? Does that line up with what you’re doing, or do you see different paths for different individuals depending on their needs?

Nathan Bryant (10:26): You just described exactly how we plan to use that house, that’s the vision. There was real debate about the best use of these first four homes. Why not build a third home for villagers to actually live in, instead of a respite house? But those of us who see the benefit of our respite program both for families and for villagers getting outside mom and dad’s house, maybe for the first time pushed hard for the respite house.

(11:07): It also gives us a training house, which we’ve never had. We have a beautiful commercial kitchen for cooking lessons, but no bedroom, no living room, no place to teach those other life skills. High Point’s respite program goes back a long way. We’ve run three-hour Friday night respite sessions for years. For about four years now, we’ve also run “Abundant Life” weekends: two nights, up to four villagers, two staff, full transportation around Lubbock, doing whatever’s fun that season, a basketball game, a baseball game. Villagers fill out a survey about how they want to spend the weekend.

(11:47): On girls’ weekends, they’re getting manicures and coffee. On one guys’ weekend, a staff member got sick at the last minute, so I filled in along with two others. The guys wanted to go grocery shopping, so we loaded into the van and it was like being back in college, buying boxes of cereal and Little Debbie snacks. I told our social services director, “It’s a guys’ weekend, this is what we’re doing.” Needless to say, that was the last time I served staff on an Abundant Life weekend.

(12:27): We’ve been limited in how many of these weekends we can run because we’ve had to rent Airbnbs. We don’t own a house in town. And Lubbock, like Austin, has crazy Airbnb prices during football season. Actually, nearly every weekend is a “big weekend” in Lubbock, it’s nicknamed Hub City because people come in from Oklahoma, New Mexico, even Amarillo for travel ball, conventions and other events. So Airbnb rates stay high.

(13:06): Once we have our own house, we won’t have to pay that Airbnb premium, which frees up the budget for more activities and better staff pay. We’re excited to go from six respite weekends a year three for men, three for women to at least two a month, meaning at least 12 men’s and 12 women’s weekends next year.

(13:39): And to your earlier point yes, we see respite as the first step toward a villager eventually moving out here. It opens the eyes of both the villagers and their parents, who often assume there’s no way their loved one could ever live independently. After six respite weekends with great reports from staff, that assumption starts to shift. Villagers who do respite out here will also become neighbors with residents who eventually live here permanently, creating built-in social opportunities on weekend nights.

(14:14): We’ll likely require that a villager who wants to move here independently, not as part of a family relocating, complete a few respite weekends first, so we understand their morning and bedtime routines and can serve them well from day one. That’s exactly the stepping stone you described: opening both the family’s and the villager’s minds to residential living as a real possibility.

(14:54): We’re also very mindful of cost, residential care for this population is extremely expensive. Part of the supportive roommate model is meant to create a lower entry point. Some organizations raise millions of dollars just to keep their rates as low as $4,500–$5,000 a month. You can’t put a price on the level of care a parent provides, but we try to get as close as we can. The supportive roommate setup, since it’s not high-level support, will cost significantly less. Our hope is that as we build momentum and raise more funding, we can eventually offer residential options for villagers with higher support needs too, because we don’t want anyone to be permanently ineligible to live at High Point Village.

(15:36): To get there, we’ll need more staff, more accessible design and more resources and we’re grateful to have relationships with organizations who already do this well, so we can learn from them.

Mike Carr (15:50): A few things worth revisiting. First, what’s the backup plan when staff doesn’t show up? We’ve found you need a backup for the backup. In a worst-case scenario, even the executive director steps in and that’s the culture at both High Point Village and John13. Parents need to know there’s a real commitment behind these programs, staffing ratios don’t slip just because someone calls in sick.

(16:39): Second, it’s a bit disheartening as a parent, but it’s also something we’ve seen in our own respite program. Our son is 36. When he knows he’s going to respite, he gets genuinely excited, more excited, honestly, than he’d be staying home with us. After all these years of caregiving, all the sacrifices, it’s humbling to realize he’d rather be at respite. But it’s also incredible, it means he’s grown into someone who enjoys that independence.

(17:40): Last question and it’s the tough one, costs. Some families have waiver dollars, HCS or CLASS funding; others rely on private pay; many are a mix. How do you handle waiver dollars, if at all? How do you handle private pay? Do you offer scholarships? What does that financial picture look like now and where do you want it to be in a few years?

Nathan Bryant (17:47): I can speak to what we do now with day programs, what we plan to do on day one of residential and where we hope to get long-term. We’re a licensed facility, which allows us to be reimbursed for tuition through the CLASS waiver, HCS waiver and Texas Home Living for villagers who qualify. A couple of our families are on ICF funding as well. Roughly 40%, maybe closer to half, of our 70 villagers are on some type of waiver.

(18:30): We provide more than the six hours of ISS the waiver typically covers, so most waiver families still pay something in addition, though for some, the waiver covers everything. We do have a private-pay option and we’ve tried to keep it as affordable as possible. Our Reach High tuition is roughly $700 a month for four days a week of programming; Dream Big is around $1,050–$1,100. It’s strange to realize we’re now doing for our adult children what we once did for daycare as toddlers.

(19:10): We fundraise about two-thirds of our operational budget every year, that’s a long-standing commitment. At one point, the goal was to keep Reach High’s tuition close to the lower SSI benefit amount, so a family relying solely on SSI could still afford most of it. We’ve made small increases over the years, mainly to pay our staff fairly, I have an amazing team who could earn more elsewhere and I don’t feel right paying them less than they’re worth.

(19:53): We also offer tuition assistance, literally everyone who applied this past cycle received it. I don’t believe we’ve ever turned a villager away for financial reasons. We have generous foundations, individuals and churches in town who step in when needed.

(20:32): For residential, we won’t be running traditional group homes. I’ve talked extensively with Deb at 29 Acres about how they run their HCS homes; she’d probably tell me not to do it, because it’s genuinely hard. At the same time, fully private-pay organizations are extremely expensive. We’ve fallen in love with about 130 families we serve annually through day programs, respite nights, camps and seasonal events. We know their financial realities and while we could go fully private-pay, we don’t want to be an organization that only draws families from around the world, we believe we’re placed here to serve West Texas specifically.

(21:23): Families on an HCS waiver receiving host-home or companion care can apply those dollars toward an attendant living with their loved one out here, or even toward a mortgage if they build a home and move out here as a family. There may also be room to combine a supportive roommate with a paid attendant for someone who needs a bit more support in the mornings or evenings, we haven’t ruled that out. We’re open to figuring out how to make it work.

Mike Carr (22:40): Nathan, this has been great. You mentioned raising two-thirds of your operating budget every year, every nonprofit deals with that. If people want to donate, get involved, or learn more, where should they go?

Nathan Bryant (23:16): Our website is highpointvillage.org no “e” on “point.” My email is my first initial and last name: nbryant@highpointvillage.org. For development or fundraising inquiries, I’ll usually loop in our development director, who’s worked nearly every role here and is moving into the residential side now. Our social services director, Natalie Hendrix, is incredible, she doesn’t just serve families in our programs, but anyone in Lubbock with questions about Medicaid waivers or navigating a new diagnosis. If you’ve just learned your child has a need you didn’t expect, she’ll remind you that you’re not the first person to go through this and that there’s a community ready to help.

(24:37): She’s mastered every acronym in this field, ISS, HCS, all of it, even though she came from outside that world originally, much like I came from a pastoral background. She’s a great resource for anyone navigating waiting lists or waiver transitions.

(25:14): For residential interest specifically, there’s a form on our website, we’ll follow up directly with details on home costs and what’s available. We’re always fundraising and honestly, it’s much easier to ask for donations at High Point Village than it ever was in ministry, one hug from a villager usually takes care of that. We love giving tours and showing people around.

Mike Carr (26:15): Last question, if you had one line of advice for parents thinking about residential care, whether in Lubbock or elsewhere, what would it be?

Nathan Bryant (26:38): I don’t struggle much with anxiety in most areas of life, but thinking about my son’s future is one place it shows up. I used to tell parents of teenagers testing boundaries, or heading off to college, “God loves your child more than you do. He’s given you to them as a parent, but he also has a plan for them when you no longer can care for them yourself.” That doesn’t mean don’t explore every option, but take a breath, because the answer already exists, even if you haven’t found it yet.

(27:57): I didn’t know High Point existed three years ago. For fifteen and a half years, I worried and searched, wondering what my son would do after high school, where he’d live. Now I know. All along, there was already an answer. I just hadn’t found it yet.

(28:31): Special needs parents grieve differently, every milestone another family celebrates becomes a fresh moment of grief for us. My son just graduated high school and I’m grieving that he’s not applying to colleges the way his peers are. But your son wanting to be at respite more than at home with you, that’s the flip side of that same grief. It’s the same feeling other parents have when their child moves out at eighteen. Isn’t it strange and kind of beautiful, that we get to grieve that too?

Mike Carr (29:43): I agree, grieving for the right reasons is a blessing, not a curse. And the word that comes to mind listening to you is faith, believing that someone is watching out for your son or daughter and that there’s a plan guiding you toward the right path. Nathan, thank you so much for your time. We’ll include contact information for you and Natalie in the show notes. Take care of yourselves and your loved ones the rest of this week. See you next week.