Autism Assisted Living: Finding Quality Care For Adults

Mike Carr shares his family’s experience raising their 35-year-old son, Michael, who is profoundly autistic, mostly nonverbal, and lives with seizures and pica. He asks the urgent question of who will care for children like Michael when parents can’t, and outlines essentials for a true residential “forever home”: near one-to-one staffing, awake overnight staff, communication-first over restraint, medical readiness, transparent data, community and work opportunities, and a culture of dignity and stability. After reviewing programs nationwide, he highlights five promising models—the Center for Discovery, Bittersweet Farms, Grafton, Woods Services, and the May Institute—stressing the need to look beyond polished websites to real practices and visits. He closes with J13’s vision to grow from respite care to full residential homes in Austin, prioritizing compassion, low staff ratios, and meaningful lives where adults with profound autism can thrive.

Chapters

• 0:00 Starting the Day with Michael
• 1:00 Facing the Question of Lifelong Care
• 2:15 What Every Residential Program Must Have
• 3:45 Researching Options Nationwide
• 5:20 Why Many Programs Fall Short
• 6:15 Five Promising Models for Adults with Profound Autism
• 7:30 The Family Checklist: Questions to Ask Before Choosing a Home
• 8:50 J13’s Vision for Joyful, Dignified Living

Transcript

Mike Carr (00:05):

Welcome back, and I'm going to be talking about finding a home for your severely autistic adult child. And I'll discuss 10 programs around the country that deal with the most aggressive behaviors. And then I'm going to whittle that list down to five that look pretty promising. Also provide you with a list of questions to ask as you explore residential options for your own child. So most mornings around 6:00 AM I pretty much do the same thing while my espresso bruise, I check out the camera in Michael's bedroom to make sure he's still asleep and he's doing okay. And if you're listening to this and you have an adult severely autistic child, you probably know a similar routine, that constant awareness, that love mixed with worry. Michael's 35 years old, he's profoundly autistic. He's mostly nonverbal. He can say a few hand words like water or cake, of course, cake when he needs to, but his iPad with his touch chat really becomes his voice for everything else.

(00:51):

He lives with seizures, he lives with pica, which means he eats things that could hurt him. And when he gets frustrated, usually because we can't figure out what he needs because he can't communicate, he might pinch or grab nothing like the hair curling from his teenage years where he'd almost pull Kay's hair right out by the roots, but still something we have to navigate every day. So Kay and I love our son fiercely and we build our entire life around him, helping him thrive routines, visual schedules, the right exercise, the best clinicians. We even co-founded a nonprofit called J13 to help Michael here in Austin and his friends flourish. But here's the question. This is the question that keeps me up at night and it might keep you up at night too. Who takes care of our kids when they can't anymore? Not for a weekend, not for a week away at respite.

(01:33):

I'm talking about forever for life. I think you want what? We want a real home for our kids. Safe, dignified, stable with staff who get it medical support that works in an environment where your child could be treated with respect long after you're gone, where they'd actually get to live that joyful life, not just exist. So right now, J13 runs an amazing respite program, but we don't yet offer residential care. Now we're committed to creating a residential program because frankly, there's nothing like what we need in Austin or in the surrounding Austin, Texas area. But before we dive into such a massive undertaking, we want to make sure we understand what's already out there. What are the best practice? What do families who already placed their adult children tell us what's working, what could work much better? Now, about 10 years ago, Kay and I toured the country and we looked at all kinds of programs.

(02:21):

We know lots changed. So before we start trips again, we wanted to sort of share with you what our non-negotiables are. So here's our non-negotiable lift. Number one, staffing close to one-to-one during the day, maybe even two to one during a crisis. And then here's the thing, overnight staff need to be right there in an adjacent bedroom, not on call in some other building. What about behavior approach, communication. First, always understanding, not restraint. Offering choices in a calm environment, never harsh language or screaming or physical force, unless someone's in immediate danger, we won't kick him out. Has to mean more than just keeping him safe. I need to know exactly how programs not just keep everyone safe, but without resorting to inhumane treatment. There's a difference between we never expel and we actually care. Well, what about medical readiness? Seizure action plans that staff know by heart.

(03:15):

Pike up protocols built into every routine, every room, every moment of supervision. Let's talk about lifespan, a real plan for aging in place. What are the partnerships for hospice or palliative care when that time comes? What about transparency? Will the program share the real data that we all know is out there? Not just the success stories. What about the frequency of behavioral incidents? What are the staff injury rates? What about turnover? Are they getting better? Are they getting worse? Now let's talk about community and purpose. We have to have a day program that matters, actual work that our son enjoys doing. Time in nature, art movement, getting out into the community every single day, not just sitting on a campus or in a classroom for hours on end. We want short van rides to climbing gyms, to trampoline centers, to bowling alleys. We want a lot of fun and challenge, not just warehouse living, stability and culture, low turnover, ongoing training, leadership that listens to families and commits to constant improvement.

(04:10):

So what I found, it sort of buckets into three groups. And I did look at websites, accreditation reports, policy statements. More importantly though, I did try to find reviews like on Reddit, what people are saying past residents, staff. So the first bucket, these are programs that really look great. You go to their website, sounds great, maybe you have a phone call, sounds great. They use the right words like unconditional care, but there's something you find that just sort of stops you cold. So there's a program in Texas, it advertises unconditional care, but by multiple counts, especially one from a former resident. They described dangerous restraint experiences and a culture that felt more like containment than care, couldn't tolerate that. So we had to mark those off the list. Pennsylvania, big national brand. They had all the right language trauma-informed positive supports, but that also too many reports from former residents and staff that described disrespectful treatment and inconsistent follow through and maybe some of their locations are better than others, but not again, a program I wanted to take a look at.

(05:04):

And then in Maryland, and there was a program that had really impressive in patient crisis, saves lives, but only for short-term stabilization. Not a forever home. So it just wasn't going to work for us. So bucket number two, good programs, but not the right fit. These were getting closer and they fell off the list for less dramatic reasons. In Massachusetts, stellar reputation, amazing clinical expertise. The staff ratios were right, but they only served up the age of 22. Well, that's not going to work for us, right? We need something that's really going to work better than for that 22 years old kind of thing. Other multi-site providers around the country, they had solid missions, they had good staffing ratios during some parts of the day, and then the staffing ratios would go to one to three, maybe one to four, one to five at night.

(05:42):

Staffing is critical. We really needed to look at that. So for us, five programs made the short list. These were worth taking a look at. So number one, the Center for Discovery in Harris, New York. It's a large nonprofit. It's known for its complex medical and behavior need adjustment. They have 24 hour nursing in their adult residences. That unit use clinical proactive behavior support worth taking a look at Bittersweet Farms in Ohio. They're one of the original US farmstead models, real work, gardening, animal care, creative arts, a lot of this stuff doubles this therapy. Their staff is trained in eru, which is sort of a restraint free approach for aggressive behavior, which we like over something that requires restraints. Number three, graft an integrated health network in Virginia. Deep experience with high acuity behaviors across the lifespan. They also use eru methods. I don't know about their staffing and their seizure protocols, but they're worth taking a look at.

(06:31):

Unless I can get some information ahead of time, the staffing's not going to work for us in Langhorne, Pennsylvania. Number four was Woods Services comprehensive system with adult residential options and capacity for one-to-one when needed. They focused on trauma-informed care and community integration. Big plus for us. And number five was the May Institute in Massachusetts, the longstanding nonprofit with adult community homes statewide, a BA supports in real vocational program. So these five earned spots on we're probably going to take a look at because they combine clinical credibility with something beyond just keeping our kids safe. They offer meaningful lives. The questions I'm going to ask when I go to these places and that this is sort of your checklist and you can download this in the show notes, safety and behavior. Walk me through exactly what happens during an aggressive episode. Who leads, who documents when the supervisors get called?

(07:22):

Show me last year's data on restraints, on injuries and on what corrective actions you guys took. If you promised no expulsions, how do you prevent that from just becoming harmful? Containment, staffing instability. What are your ratios by shift, including overnights and weekends? How do you maintain them? If somebody calls in sick, is one-to-one guaranteed when it's needed? If so, who authorizes it and who pays for it? And what's your direct care staff turnover rate? Let's talk about health and clinical. What are your seizure protocols, your pica environmental controls? What's your medication management policy? Can residents age in place with hospice care available if needed? Who do you use as your partners? And then just the daily life maintaining the dignity of the folks. Show me what a real Tuesday looks like or a real Saturday. What kind of work and community involvement do residents have every day?

(08:10):

How do you support communication devices? What are the backup plans when someone breaks their device, which we all know happens, right? So here's what I know from this search. There are great looking programs from a website standpoint, and then you find horror stories and they both true about the same place at the same time. That's why you got to look at all the data. You got to find an organization that's going to be transparent. You've got to recognize no one's perfect, and you've got to take a look with your own eyes to see what the environment's like. I know we can build something that J13 that's going to be the best probably in the country, at least right up there because we're committed to that and we're trying to transform our existing respite program into that full residential care. Over the next couple of years here in Austin, what we're going to do is we're going to hire for the heart and we're going to train for skill.

(08:51):

We're going to measure what actually matters. We're going to create real homes, the gardens, the music, and the community trips. Just like our current programs, we're going to provide places with low staff ratios. And then you're going to view these staff ratios, not as a luxury, but as a lifeline. Places that treat harsh language or restraint as a system failure, not as something that we ever want to become a standard procedure at J13. So here's what's going to happen. We're going to visit these programs and probably some others in the country that other parents find out about, and we're going to try to come up with something that's maybe a little more novel, a little bit more exciting. We're going to be looking for the unexpected when we make these visits. We're going to ask the hard questions. We're going to try to request unannounced tours, and we're going to watch for the little things.

(09:33):

And I think you probably are going to watch for this too. What's the tone of voice that the staff uses? Are the smiles forced or natural? When someone notices a loose carpet edge that could tempt a person with pica behavior, what do they do? Does that Thursday or that Saturday visit look like a life worth living or are just a day to get through your child? Our child is not a problem to be solved. They're a person deserving a beautiful life. Please don't settle for a place. They'll just keep your child safe. Look for the program that excites you, where you can picture your child laughing, building friendships, having adventures where they won't just survive, where they'll thrive. That's really what we're committed to building at J13. And if you're in Texas and you want to follow our journey, please reach out. If you're anywhere else, I hope this shortlist in our tour checklist will help you find what your family needs because our children, they're worth fighting for. They're worth building something extraordinary for, and they're definitely worth refusing to settle for anything less than the beautiful, dignified, joyful life they deserve.