Finding the Right Autism Residential Care: What I’ve Learned as a Parent

Planning residential care for your adult child with autism is terrifying. My son is 35 now – he’s severely autistic, can’t speak, has pica behavior where he eats things he shouldn’t, and deals with seizures. My wife and I have been wrestling with this question for years: what happens when we can’t take care of him anymore?

Here’s a sobering statistic that keeps me up at night – 86% of adults with autism or intellectual disabilities are living at home, with relatives, or in basic group homes. That’s a lot of families in our shoes, trying to figure out what comes next.

Key Points:

• Pick autism housing designed for sensory needs, safety, and private bathrooms.
• Choose communities near real-world activities, not isolated campuses.
• Aging-in-place models reduce stress from disruptive moves.
• Look for programs with meaningful jobs and integration.

Why I Started Looking at New Facilities

I’ve been researching autism residential care options across the country, and honestly, most of what’s out there isn’t great. Too many places are just regular buildings that got retrofitted, with fluorescent lights that make our kids go crazy and shared bathrooms that create more problems than they solve.

But lately, I’ve been finding some hope. There are five new facilities being built right now that actually get it – they’re designing these places from the ground up for people like our kids. Let me tell you about what I’ve found.

The Five Places That Give Me Hope

Red Bank, New Jersey – Finally, Someone Gets the Details

There’s this place called Thrive Red Bank that’s a partnership between a nonprofit called Parents with a Plan and Rutgers University. They’re building 32 one-bedroom apartments with staff quarters right on the ground floor – and that matters because when your kid has a meltdown at 2 AM, you need someone there immediately.

What caught my attention is they actually thought about the little things. Low voltage lighting instead of those awful buzzing fluorescents. Drains in the bathroom floors – and if you’ve ever had a kid who leaves the shower running, you know why that’s genius. Faucets and ovens that automatically shut off. 

The downside? The staffing ratios probably aren’t enough for kids like mine who need constant supervision.

Massachusetts Gets the Long Game Right

Up in Tewkesbury, there’s a company called Melmark building something on three acres that really impressed me. They’re housing 20 adults in four buildings, plus running day programs for 50 more people. But here’s what’s smart – they’re building a coffee shop for job training right on site.

The thing that sold me on checking this out further is their aging-in-place concept. Think about it like a regular senior community – you start in independent living, maybe move to assisted living, and eventually need nursing care. But you stay in the same place with the same people. For our kids who hate change, this could be huge.

When we moved our son from outside Austin to near UT campus, he was a mess for months. We learned the hard way that transitions are brutal for these kids. Having a place where they can age without having to start over somewhere new? That’s worth its weight in gold.

South Carolina Keeps It Simple

Oak Tree Farms in Conway is adding 48 new apartments in two buildings. It’s more of a straightforward independent living setup with transportation, life skills training, a pool, and an amenity center. Sometimes simple is better – not every place needs to reinvent the wheel.

Florida Does Community Integration Right

The Haven Jakes Place in Sarasota is building their ninth group home – a 6,000 square foot place with eight suites and private bathrooms for everyone. What I love about this one is where they put it. You can walk to the mall, there’s a rowing facility nearby, and they’ve got that new aquarium.

See, isolation is the enemy. Our kids need to be part of the real world, not stuck out in the middle of nowhere. This place gets that.

Maryland Tries Something Different

Patuxent Commons in Columbia caught my eye because they’re mixing seniors with people who have autism. About 25% of their 76 units are reserved for folks like our kids, but the rest are regular seniors and other people.

I know it sounds weird, but think about it – your physically strong autistic kid could help push wheelchairs, and those wise older folks could help with activities. We’ve got a senior facility right down the street from our respite home, and I keep thinking we should try something like this.

What I’ve Learned About What Actually Matters

Don’t Settle for Retrofitted Remodels

After looking at dozens of places, I can tell you this – find something new that was built for this population. Not some old nursing home they slapped a fresh coat of paint on. Would you want to live there? If the answer’s no, keep looking.

The Details Make or Break It

Good autism residential care means adjustable lighting, quiet spaces where they can decompress, private bathrooms (trust me on this one), and systems that automatically turn things off. We use motion cameras with audio at home – when our son gets up at night, we know immediately and can even talk to him through the system. More places are starting to use this kind of tech, and it works.

Location Isn’t Just About Pretty Views

Being near a real community matters more than being on some beautiful isolated campus. Your kid needs access to normal stuff – movies, bowling, restaurants, all the things that make life interesting. And honestly, being around neurotypical people is good for everyone involved.

University Towns Are Gold

If you can find a place near a college, do it. Students need work and course credit, professors love real-world projects, and campus communities are used to dealing with all kinds of different people. Plus, student housing keeps costs down for everyone.

Jobs Need to Be More Than Busy Work

Look for places that offer lots of different vocational options. There are plenty of jobs out there that our kids will hate, so having variety means they might actually find something that gives them some satisfaction.

The Intergenerational Thing Might Actually Work

I was skeptical about mixing seniors with autistic adults, but the more I think about it, the more sense it makes. Some of our kids are incredibly strong and could genuinely help older folks who need physical assistance. And those seniors have patience and wisdom that could benefit everyone.

We haven’t tried this yet with our respite home, but that senior facility down the street keeps looking more interesting.

Where We Go From Here

We haven’t found the perfect place yet. Maybe it doesn’t exist. But these new facilities give me hope that people are finally starting to understand what our families actually need.

The key is finding autism residential care that treats our kids with dignity, gives them as much independence as possible, keeps them safe, and – this is important – lets them have some joy in their lives. They deserve that much.

If you’re on this journey too, stay connected with other families, keep researching, and don’t give up. Our kids are counting on us to find something better than what’s been available. And slowly but surely, I think we’re getting there.

Transcript:

Mike Carr (00:04):

As part of our transition series, we’re going to talk about autism residential options today. Did you know that 86%, 86% of adults that are autistic or have intellectual development disorders challenges either live at home or they live with a relative or they’re in a group home now. So what’s going to happen when you can no longer take care of your severely autistic son or daughter? You’re a kiddo that has multiple special needs challenges. You can no longer go to that group home and see what’s going on, or your relatives that are taking care of them can’t do it any longer. That’s what this episode’s about. It’s about to look for when you’re out there checking out other facilities and other programs. So there really is a better future for your adult child. And we’ve been on this journey for a while. Our son is 35 years old.

(00:51):

He’s severely autistic, he’s nonverbal, he has pica behavior, he has seizures, he has a variety of other challenges. And so we want to take you on a journey along the lines of what we found. And today I’m specifically going to talk about five new facilities largely on the East coast. They’re under construction right now. And a little bit about each one and some of the things that you maybe should look for when you’re out there, checking out residential programs, wherever you live, and I’ll highlight some of the key aspects that based upon our journey and a lot of the parents that we’ve talked to we think are pretty darn important. At the end, I’m going to provide key takeaways. So once I go through all five of these, I’ll give you a checklist of key takeaways, things to look for. I’ll include some of the insights my wife and I have learned, and we’ll have citations for all the research links to all these different programs.

(01:35):

And then in future episodes after this one, we are going to continue on our journey. We haven’t found the ideal place yet, but we’re trying to stay up to date with what’s out there around the country so that we can also share some of that with you guys as well. So the first construction project I want to talk about is in Red Bank, New Jersey. It’s a new apartment complex. It was talked about yesterday in Disability Scoop. That was August the 26th, and they’re building 32 1 bedroom units and they’re going to have staffing quarters on the ground floor. So we think it’s real important. One of the things to look for is staffing with your kiddos. And as we know, parents, severely autistic, profoundly autistic, other parents of kids with special needs. You need the staff there 24 by seven, so if there’s a problem in the middle of the night, they’re there to take care of it.

(02:18):

This is called Thrive Red Bank. It’s a partnership between parents with a plan, which is a nonprofit in Rutgers University, and partnering with the university has some real advantages, which I’ll talk about here in just a little bit. The amenities are what are interesting because this is a building that’s built from the ground up for this population. So low voltage lighting. We know that fluorescent lights tend to cause our kiddos to go crazy sometimes because the buzz and the weird colors and all that kind of stuff. Sensory friendly gathering, places that aren’t so noisy where there’s comfortable furniture to sit down in drains in the bathroom on the floor. This is pretty obvious, right? If you’ve ever had a kiddo that leaves the shower on because they just don’t care. Faucets and ovens that turn off automatically if left on. So some pretty cool things.

(03:02):

The problem with this particular complex is though the staffing ratios aren’t what we need for our population. And it’s not cheap, right? It’s $5,000 a month for a one bedroom apartment. Now if you’re in Massachusetts, you can go over to Tewkesbury, Massachusetts. There’s a new planned community. It’s being developed by Mel Mark. I think they’re pretty well known in that part of the country. It’s on three acres, and this is sort of cool, right? This idea that you’ve got a campus like setting or a mini campus like setting, but also near enough a community so that there’s some options to participate with a lot of the neurotypical folks in the normal day-to-day life kind of stuff. They’re building four residences on this, three acres that are going to accommodate 20 adults, and they’re going to have a day program for 50 more folks that don’t live there.

(03:48):

And they’re also building a coffee shop for vocational training, which will be sort of cool, right? They’re going to have all kinds of daily living activities. How do you dress yourself, brushing your teeth, all that kind of stuff. Community engagement programs, which we think is super important. Recreational opportunities. One of the things to look for, we believe in any home is this mix of fun and joy with hopefully a vocation or a job that your kiddo enjoys. And so there are lots of jobs out there that they’re not going to like. And so having enough variety so you find something or the staff finds something that they actually get some juice out of is a big deal. This particular community is really around full community integration and also it’s going to help them age in place, which we think is really cool. So think about a senior living facility.

(04:32):

You maybe start out in independent living, then you moved into assisted living. Then finally you may end up in nursing. Well, having that same kind of integration for our kids as they grow old, they start with independent living as much as possible. Or maybe they have to start with assisted living, that there’s a staff person that’s helping ’em do a lot of things like our son, but they still can be as independent as possible. And then before they pass away, there’s a nursing home there and it’s all on the same campus in the same community. So it’s in familiar settings. If you’ve ever done this, and we’ve done this when we moved from a community outside of Austin to right next to University of Texas campus, our son was distraught. I mean, for several months. It was a challenge, actually. It was a challenge when we moved from Dallas to Lago Vista and we learned the hard way after a couple months of no sleep, not to do that again.

(05:18):

So we moved from Lago Vista to Austin. We took him to the house and he was used to spending a day or two here. So it took a couple months to get him acclimated to the house and everything else so that when we finally did make the move, it was no big deal. So we’d recommend certainly thinking about that and looking for a community that once they’re there, once they’re used to everything, it’s no big deal for them to move from a more independent setting to a more assisted living setting to perhaps a nursing home at the end. Another community I want to talk to you about is in Conway, South Carolina. Oak Tree Farms is building 48 new residences, 48 apartments and two new buildings. They’re also looking at independent living model, which we think is a big, and the community is going to have access to transportation.

(05:59):

There’s going to be life skills training. Of course, they’re also going to have an amenity center, a swimming pool, onsite facilities. And so this is pretty cool, and it’s tailored specifically for adults with autism or related disabilities. Then in Florida, we have the Haven Jakes Place Group home. Their groundbreaking was in April of this year, so it’s not done yet. It’s a new 6,000 square foot eight suite home. Everyone’s got a private bath. This is a big deal. I think private baths are pretty darn important. I mean, situations where you’ve got a shared bathroom might work for a little while, but long-term, I think there are many advantages to, especially if your kiddo enjoys spending a little bit of extra time in the bathroom or a long shower and someone else is waiting and that causes frustration and behavior issues and everything else. They’re also going to have a sensory room, a theater.

(06:46):

They’re providing 24 by seven staff support. This is the ninth. The ninth single family group home they’ve built. And so they know what they’re doing, and it’s in a prime location. It’s been the M walking distance of the mall at University Town Center, evidently there’s this Nathan Benderson’s Park, which has a pretty cool rowing facility. There’s Moat, Marines, new science education, aquarium, aquarium sorts around, cool, and all kinds of restaurants, entertainment. So we like the variety of places to go at The Haven Shas Place in Sarasota, Florida. And then Patuxent Cummins in Columbia, Maryland. They had a groundbreaking back in October of 2024, so not quite a year. It’s a 76 unit mixed intergenerational community. And this is a partnership between Mission First with the Autism Society of Maryland. About 25% of those units are going to be reserved for folks with autism disabilities, but they’re also going to have seniors living there, and they have other people living there.

(07:44):

So this idea that you mix someone that’s older, that maybe is in a wheelchair, and you’ve got your son or daughter, that’s while they’re autistic, they’re physically very able bodied and maybe part of their job is pushing a senior around in a wheelchair part of the day, and they develop that bond and that relationship. But for the seniors that are more mobile, of course, they come on over and help with therapies and other activities. So this idea of mixing seniors with this population has been tried, and I think it’s worked successfully in other parts of the country. There are always challenges, but this is an idea that we like, and it’s something that I think the Autism Society of Maryland is supporting. And Mission First has been doing this for a while. They have, believe it or not, they’re serving 6,000 people. They’ve got nearly 4,000 apartments.

(08:27):

So again, they’ve sort of got the track record, and I’m not up there. I have not looked at their facilities, but it sounds like at least if you’re in Maryland, it’d be worth checking these folks out. Again, they’re located in Columbia, Maryland. So what are the key takeaways? So my opinion as a parent and my wife I think would share this, look for something that’s new and modern, not something that’s dilapidated, not something that was not designed for this community that’s been sort of retrofitted, but place that you would like to live, right? Accommodations that are designed for this population. So what does that mean? We’ve talked about lighty, not too bright, things that can be adjusted. We’ve talked about sensory friendly gathering places, drains in the private bathrooms, and having a private bathroom, things that turn off automatically, whether it’s lights, ovens, faucets, ac, heat, they leave and things shut down because they never pay attention to turning anything off.

(09:16):

We actually use cameras with motion detection and audio. And so what happens is if our son gets up at night, a motion detector goes off, we know he’s up, and then we have audio. We can listen to what he’s doing, and we can even talk to him and say, get back in bed, and then we can watch on the camera, see if he gets back in bed or not. So there are those kinds of devices. They’re not expensive, and I think they’re being integrated more and more into residential settings. The full community integration we think is hugely important, right? That you’re not out in the sticks on an isolated campus, that if you’re on a campus, it’s either inside or near a community or adjacent to a community where there’s not a big drive or anything to get to all the neurotypical activities, the movie theaters, the bowling alleys, the indoor trampoline parks, all the things that are fun that people enjoy doing that they may not have access to if they’re sort of isolated by themselves.

(10:04):

And just that mixture of neurotypical and neurodivergent. It’s a much more normal dynamic, and we’ve seen some very cool things in some of the programs we’ve been involved develop as a result of that. Things you might want to consider is near a college or university campus. I mentioned Rutgers is working with some folks, as we talked about originally in this first community in Red Bank, New Jersey, and they’re working with the parents with a plan nonprofit. We had University of Texas come in and really help us, and you can often find students and they get course credit. So either they’re getting paid by the university or they don’t get paid at all. So there’s an advantage there in terms of just the cost. And then the professors come on over and talk to you, look at the program, help design the program. So near a university where student housing maybe isn’t all that expensive, where there’s an acceptance of a very unusual set of folks and different types of people.

(10:57):

And it’s just sort of the normal that everyone’s very accepting of. Anyone with challenging behavior, some of them have challenging behavior is always a great thing. And then the last thing I want to talk about is that senior integration. We have a respite home. So we actually purchased a home where we’ve got 8, 10, 12 folks that congregate before they go out into the community during our day program. But right down the street, like a block away is a senior facility. And so we haven’t tapped into this yet, but certainly there might be some vocational opportunities at the senior facility where they go over there and help clean and do other things. Or maybe some of the seniors could actually come on over and engage with some of our folks. So that’s it for this episode. Stay tuned next week, we’ll continue talking about more of this. Have a great rest of your week.