Residential Care for Autism: What We're Learning About Creating Programs That Actually Work

Joel and Martha are planning a meaningful future for their 20-year-old son William, nonverbal but highly intelligent (spells to communicate), with autism and apraxia, body-control issues, and elopement—because typical programs don’t engage people like him.

They want purposeful work, social connection, graduated independence, community engagement, and flexible days mixing vocational, recreational, and social activities in environments that assume competence; major barriers are staffing, behavior support, funding, and sustainability, and they look to models like New Jersey’s We Make – Autism at Work and John 13 for balancing structured work, recreation, safety, and independence.

Transcript

Mike Carr (00:04):

Well, welcome back to Autism Labs everyone. This week we have a special episode I think you're really going to be interested in, and anybody that's thinking about residential care down the road for your child, severely autistic or some other special complex needs diagnosis, Joel Wood and his wife have been on this journey, started this journey and I think have some interesting experiences to share and maybe some questions that we all should think a little bit more about. So I want to let Joel introduce himself and maybe tell us a little bit about his son William, and then we can get into some of the questions that hopefully everybody will be interested in. So Joel Faraway.

Joel Wood (00:36):

I'm Joel Wood, my wife Martha and I live in Nashville, Tennessee. We moved here about two and a half years ago from Memphis, so stayed within the state. We have three sons, 24, 22, and 20. And our third son, William, is the 20-year-old who has autism and he has apraxia. We've been on this journey with him for, well, he's 20. We've been on the journey of about 17 and a half years since he was two and a half when we got the diagnosis. It's been a lot of your listeners, Mike. It's been an interesting journey. It's been super challenging. It's not what we hoped or dreamed for, but God's plan is perfect and we believe in that and we believe that things happen for a reason. So we're still trying to figure it out.

Mike Carr (01:16):

I think we all are right. I don't think anybody is ever totally off the path and always looking for better solutions. So if you wouldn't mind, start with Praxia, so everyone knows what that is. I think many of our listeners and viewers will be familiar with autism

(01:30):

And

(01:30):

Then maybe we can talk about why you guys decided to start with a residential program or path or vision versus using something that was already out there.

Joel Wood (01:40):

Yeah, yeah, happy to. So apraxia is really at sort of a base definition level is the inability to deliver speech. We used to call it for a long time speech apraxia. Now we've learned it's more than that. It's bodily movement. We know that William has words in his brain but he just can't deliver it to his mouth. And so he is a non-speaker When things are desperate, when he really has to use the restroom, he'll say bathroom,

(02:03):

But that's about the level. And so if he really wants a pizza, he might say pizza, but those are the things that he really can say. So his vocabulary is extremely limited, but he is a speller and which I'm sure many of your listeners have encountered that phenomenon over the last several years. My wife has just been incredible through this journey. She has an insatiable desire to learn and to help him and to get him on a path. As you've mentioned in some of your podcasts, your wife has done yeoman's work and so is mine. And so she discovered spelling to communicate a few years ago and took the course to become a practitioner. And so we have discovered through that process that William is very intelligent

(02:43):

And so he has something to say. He is about to get his high school diploma, which is something five years ago we would never dreamed of. So the apraxia piece is very prominent in his profile. He cannot control his body. He has behaviors that really he doesn't want to exhibit. We ask him those questions, why did you do this? Why did you do that? I can't control my body. I get regulated. The biggest issue that he has is elopement. If he comes to the conclusion and I want out of this situation, he'll bolt and he'll leave you and that's a huge problem and that's where that sort of brain body disconnect comes into play.

Mike Carr (03:20):

Yeah. Let me stop and just follow up on one thing you mentioned I just think is hugely important. That is your son really is quite intelligent and I think a lot of parents are still wondering the answer to that question. If they have someone their child has apraxia or just has trouble communicating and there is hope. I think one of the things that we've discovered on our journey with Michael, our son and you certainly it sounds like you've discovered, is just because they can't talk or just because they can't control their body, doesn't mean that there's not a real thinking human being inside and never give up. How intelligent, what cool traits your son or daughter might have just because to date it's been a tough road to hoe and you're not sure

Joel Wood (04:03):

I would agree with that. And I think that's the temptation, right? I mean my wife and I won't say we're worn out, but we're tiring. Yeah, I know I'm 61, she wouldn't want me to say, but she's a few years younger and it wears you out. There is that temptation to give up and say, well, we've been at this a while, let's just see if we can figure out a solution, put 'em somewhere else.

Mike Carr (04:29):

Well, and I think that's a good segue into you can't do this alone even when you've got a parent and two parents that are actively involved like you guys are, and Kay and myself have been, it's still not enough. You don't have answers to all the questions. And I think part of what we had talked about previously was how you have now reached out to maybe to some other couples, some other parents share if you would, a little bit about that decision and what you've learned so far from that.

Joel Wood (04:55):

Yeah, I mean we've done, I won't say a ton of work, but a fair amount of work on what the options are for him, whether it's private residential or it's state programs or it's shared living using the Medicaid funding that he has. But I think one of the things that we've discovered through this process and mainly motivated by what we've learned through him being able to spell, is that he is not going to accept being in an environment where he's not presumed to be competent. He's not engaged at an intellectual level. Now look, he's got some real gifts. I think he's got a photographic memory, he's very good at math, as I'm sure comes as no surprise to a lot of different people who've been on this journey. These kids tend to be very good at logical mathematical applications. And so most of what's out there or has been out there for options are not set up to engage these kids at that level. The established residential options were set up 30, 40, 50 years ago when the landscape was completely different. The folks that were intellectually disabled, they went there when they were 18, they stayed there forever. They went there for four or five years for sort of away experience and then came back to mom and dad or they came back when they were 40 when mom and dad were in their seventies and couldn't do it anymore. So the model, what we've learned now about our son requires a different

(06:20):

Approach.

(06:22):

He's not going to accept doing menial things. That's the challenge. I mean, there's plenty of programs out there that offer wonderful things and they have a purpose, and I don't want to denigrate that at all. It's just he's got this disability but yet is hampered by this sort of brain body behavior problem. And so I think what we've come to is we've got to, or we're exploring in creating something for him through the spelling community here, we've become in contact with a couple of other couples that where their sons are somewhat similar.

Mike Carr (06:55):

The thing that we've learned too is everyone's different. And the problem with a lot of the programs that are out there is they've sort of standardized on a routine without really differentiating the one's desires, passions of each individual in the program. And there's some obvious reasons for that, right? It's less expensive and staffing's easier, and the day-to-day routine is simplified. The problem is for the Williams and the Michaels out there, that doesn't work. They get bored quickly. In our case, Michael needs a lot more physical activity than just sitting at a table for hours on end. And so trying to craft a program where each individual is accommodated, and so even though three or four guys might want to do something together, which is often really cool and exciting, others may need to be taken aside. And it might even vary day by day. If someone's having a good day, they got enough sleep and they're feeling good versus they have issues that night. So having that awareness and building a program so you have the flexibility and the staffing to accommodate that. And so what have you guys thought about in talking to these other couples that were sort of in the spelling community, what are sort of the key objectives or key goals that you've set up your vision, Hey, the ideal program for us would look like this and the way we think we can do that might be something else that you've already thought about. I'd love to hear your thoughts on that.

Joel Wood (08:10):

Yeah, lemme go back to what you said about the sort of problem that's presented. That problem has been with us almost since day one when your son or William entered the school system, after a while I kind of figured out what the school system is set up for a typical kid or on the other end, it's set up to handle someone who's in a wheelchair who has enormous physical disabilities or physical challenges and it's trial by fire. You might get someone who's really engaged, who's really motivated, who wants to meet you, where your son is and help. Or you might get someone who's really disinterested in that and just wants to apply to formula. So this problem has been with us for a while, but now it's really front and center because when he's 22, he has to do something right.

(09:01):

So I think our objectives are really, we want William to have a purpose. We want him to have work. I think Martha and I both believe there's dignity and work and we want him to be productive in some form or fashion. I think everybody would want that for their son or daughter. We want him to have community to have friends. He says that on the letter board, I want to have some friends, he's lonely being at home. He wants to see what his older brothers did. They graduated from high school, they went to college, one's out working. He wants that. I want to get out of here. I understand I want to separate from mom and dad, which is natural. And I think what we want to have is sort of graduated independence, right? We could create something where he's got the supports that he needs from communication partners, from folks that are working on his physical abilities, OTs. Then I think at some point you can graduate to getting, I continue to believe he's still maturing. He still, we all are, right? We're still sort of evolving as human beings. He just may be on a different timeline and so maybe we might get there where he could be independent. We haven't sort of given up on that. And then I think the acknowledgement of competence,

Mike Carr (10:06):

Right?

Joel Wood (10:07):

You've talked about a lot in your podcast about the J 13 program and what you're creating there. The old approach just doesn't work with these folks. And so assuming that they're competent, talking to them, they're intelligent is key. You're going to get a lot further with folks that have the profile of William does by doing that rather than talking to he's seven and it just doesn't work. And so kind of those five things, purpose, community separation from us, graduated, independence, acknowledgement of competence, those are our objectives.

Mike Carr (10:40):

And one of the things that you mentioned that I think is a natural outcome in addition to those five things is eliminating that isolation. And I think a lot of parents have sort for better or worse decide that when their kid ages out of the school system, keeping them home is okay. At least they're safe. At least they know that they're not getting into trouble, especially if they can't talk, they can't communicate, but that's not a happy environment. And so as soon as you get them out into the community, like you're talking about with some buddies, the social interaction is amazing to watch. All of a sudden you see things you never knew they had the potential to do. They're joking and jostling, even though they can't necessarily talk, they get body language, they understand how to interact and so a magic almost occurs when they're out there, not at home by themselves, but with others doing fun things that excites them. That gives, I think everybody hope and lets you see the light at the end of the tunnel that hey, if we could find a residential community that embraces that and make sure that happens on a daily basis, things could be really pretty darn cool. So how are you guys going to get there? You've obviously started some conversations. What are the biggest challenges, obstacles that you're facing, and how do you see navigating that path forward?

Joel Wood (11:53):

Well, I think that's obviously a huge question for us. They're still in sort of exploration mode. I think the biggest challenge is what is it? What do you do every day? If we start with a day program and we sort of operate like that for a while and we get into the respite zone and then ultimately residential, but you have to start with what the secret sauce is to begin with. What is the day programs, what are they going to be doing day to day? I think the temptation is to get ahead of yourself and say, well, this is the vision. We want to have their own house and

(12:24):

We have be beyond a 10 acres, and there's just all sorts of challenges with that that we're not, I think defining what it is right now and coming to some concrete decisions about what happens day to day and how do you staff it, how do you fund that staffing. As you know, staffing is a huge issue. I don't care where you go private residential Medicaid caregivers, it's the turnover in this community of caregivers is huge. And so finding the right people, paying them well, and so that creates, that begs the question, how do you fund that? I think defining what it is and what the day-to-day activities are and who does that and how do you fund it are the real challenges.

Mike Carr (13:00):

That's like a checklist. I think anybody listening to this, whether you decide to start your own program or you're looking for another program, you've got to be thinking about those things, right? You've got to be thinking about the sustainability. If you find an existing program that's got some cool staff right now, I mean one of the questions is, well, okay, what is your retention rate? What is your annual turnover rate? How many of these folks have been here for more than a few years and do they seem excited and pumped up? And then you learn by making your mistakes. One of the things that we've discovered, and I don't think it makes that much difference what the community activity is, but there's a certain magic to variety and to mixing recreation or fun with vocational activities or jobs,

(13:42):

At least for a lot of folks, and I dunno if Williams like that, but a lot of folks in our program, they're not going to be able to do the normal nine to five, eight hour kind of job without more breaks and some fun. And so one of the environments we have is a crux climbing gym here in Austin. They'll maybe work for an hour doing whatever the skills are that they get excited about, whether it's cleaning or stocking the fridge or doing something that's more cognitive. If they have that skillset and then they get a break and then they get to go climb or they get to go play ping pong or get on the bikes, the stationary bikes, and so it's mixing in a more fluid manner, breaks and fun with vocations, and that's maybe one or two days a week, and then you do something else on the other days. So there's this constant anticipation, oh, I can't wait to go back to a crux, or I can't wait to go back to the park or the trampoline gym or whatever it might be. What have you guys seen work or is it too early for you guys to say, Hey, we've tried a few things or we've heard stories of a few things and we're most optimistic about these types of activities or this mix of activities over the course of a day or a week that might work best for our program as we build it out?

Joel Wood (14:45):

One of the things that Martha and I got really excited about is a program in New Jersey called We Make Autism at Work. I don't know if you've heard of that, seen it. It's started by a guy who's had a son with autism and he's cobbled together four or five corporations who want to give work to their community. And so they have this building where they come and work, they, it's like kidding. They put together kits. When you turn your cable box back into the cable company, all that stuff gets reused, and so they reassemble the kits. That's one example of things they do. So they have this facility and it's 20,000 square feet and they've got workstations and they've got rooms with an Xbox or something, some gaming, or they've got a trampoline or they've got a basketball hoop out back. You've got 30 autistic people who are working for 30, 45 minutes, take a 15 minute break, come back.

(15:36):

And that is an incredible environment, those guys, and that's what we would hope we could have for him at some point and others. But again, the challenge is most of those guys were there when we visited, pretty regulated. We will take direction, follow directions, they're not wandering off. So the staffing to sort of worker ratio works economically, right? Because getting paid and it's an operation, it has revenue. And so that's where the challenge is, is getting people that who are working in the facility or sort of supervising activities who understand the challenges that your son and my son have from a behavior standpoint. That's where the real crux of this is. Can we get them where they'll take direction, they'll behave. They won't have the urge to elope and just leave. That's the real issue that we're wrestling with.

Mike Carr (16:30):

We've seen a lot of programs in Texas and elsewhere around the country, and we're always very aware of what might work for our son, people that have a higher level of need or more behavior problems than perhaps the IT l autistic individual that we make program. And I think having a proactive approach that you anticipate, well, not everything's going to work out today for everybody. It's not like the assumption is, well, everybody's going to be able to be there and calm and work well together and have a marvelous day. That might happen. That should be probably not right. And so something's going to go amiss and probably a bunch of things are going amiss. And so let's have protocols in place where if somebody's having a tough day, they can spend more time outside on the basketball court or they can go for a walk or they want to really game.

(17:16):

And so we're using that as a motivator. Instead of working 45 minutes, maybe they only get to work or they only want to work 30 minutes or 15 minutes, then they get to go. And so you sort of craft that for different individuals. And those individuals aren't the same individuals day to day, right? Different people are having good days, other people are having bad days. What that does require though, is a staffing ratio. That's probably better than you see at a lot of programs. I mean, our son has one-on-one staffing from the time he wakes up the time he goes to bed. Of course, that's very expensive. We do have some help from the waiver program, and then we have to supplement that with some of our own funding. You obviously are paying, in some cases a tuition, even though there's some compensation. Many of these programs have some type of tuition or a program rate to help cover the cost of the staff.

(18:00):

And then you've got to, I have not talked to any program anywhere in the country that's truly net neutral, that truly can raise enough money from whatever products or services they're providing to cover the cost of everything. And so there's always this fundraising component. Now, ideally, you can cover a lot of your operating costs, so the day-to-day operations maybe are net neutral in terms of income versus expenses, but then when you factor in your fixed overhead and new staff and training and all the other stuff, it's tough. Have you gone down that path? Have you looked at the financial model? Do you have any insights there or any concerns there that you think might help others understand what to expect and how to address some of these issues?

Joel Wood (18:38):

I mean, clearly I understand I don't have the solution. I mean, I know that there's several facilities or proposed facilities around the Southeast that are modeled after Brookwood in Texas and with a work sell component to it where they're making a product that's being sold. But I think the challenge is, as you point out, is that never covers enough of the operating. Maybe it might cover the operating costs, but what if you want expand? What if you want to build another facility? There's always this fundraising component, and I don't have the answer to that

(19:09):

For sure.

(19:13):

I think if I just talk about the options that we've kind of identified, maybe that might be helpful. There's always private residential, right? If you're son or daughter is got the ability to, and you have the means, there's private residential options that are wonderful, but most people don't have the financial wherewithal to pay 75, $80,000 a year. It requires a lot of capital to fund that. But then there's day programs. So our son, there's where we live, there's several day programs that might fit for him. If his behavior gets to the point where he can do it, that's an option. I think an option is for us, him to remain at home and for us to put together a private network of caregivers and just kind of cobble together our own program for him. But that is super taxing on us, and it requires a lot of coordination. It requires a lot of, you're constantly in this hiring mode of trying to find people. You identify someone who's great and they might be here for six months, nine months, a year, and then they're moving on to something else. I mean, that's just how things work. And so you're constantly in recruiting mode.

Mike Carr (20:15):

Hey guys, we're going to take a quick break right now, split the episode into two parts. So next week we will continue the interview with Joel Wood and all the discussion around residential and some of the things that he's thinking about. Until then, have a great week. See you.