Supported Living for Adults with Autism: A Parent's Guide to Housing Options (Part II)

Mike Carr and Ann Hart discuss housing and independence for adults with autism, stressing that options depend on each person’s support needs. They note SSLCs have improved, recommend visiting programs and evaluating staff, and suggest starting early (short stays, camps, new caregivers) to build independence. They also mention that some states have more flexible waivers or housing models (relocation can help) and point families to Texas resources—Autism Society, Texas Parent to Parent, and local LIDDAs—urging networking and ongoing learning.

See the resources here: https://acesse.one/Zq4iW

Chapters

• 0:00 Welcome & Introduction
• 1:11 Understanding Housing Needs
• 4:16 The Evolution of SSLCs
• 8:31 Visiting and Evaluating Programs
• 11:41 Exploring Options Across States
• 15:01 Building Independence Early
• 19:31 Key Resources for Families
• 23:11 Final Thoughts & Encouragement

Transcript

Mike Carr (00:04):

Well, welcome back to our continuation of last week's episode with Ann Hart, past president of the Autism Society of Texas, the mom of a 40-year-old severely autistic son who's been answering questions about autism for 35 years in Florida and in Texas for hundreds, probably thousands of autistic parents. So we're talking about housing. If you missed the first episode, you may want to go back and watch it. It has lots of interesting comments that Ann made and we're going to continue right now with that discussion and a few more tips and pointers from Ann Hart. And I think that's the key. I mean, if higher the support needs, as Ann's already mentioned, the fewer options that are available, but if your kiddos fairly independent and verbal can communicate, okay, then I think there's a much broader range of options to consider on this slide. And then if we move over to the next slide, which is the state supporting Deliverance Center members and some of these other things, these are also perhaps options where you don't necessarily need that one-on-one support. Is there anything, Ann, in particular on this slide that you want to just touch base on?

Ann Hart (01:05):

I think I kind of said it well. I think what I want to touch on here, when we talk about the state supported living centers, depending on what you've read, what you've heard, depending who you hang out with, you may think of the S SLCs as like hell. I mean, sorry, that's too strong. But you may have a very, very negative impression of the state supported living centers. I get it, I get it. I totally understand why we could talk about the history of that. But all I will say is for some of our family members, the SSLC might not be the worst thing that could happen to them, especially some of the s SLCs have made loads of progress after being audited and there were some severe problems that some of 'em say 20 years ago or so, say the Brenham State Supported Living Center.

(02:00):

People seem to love that place. I mean, I've heard so many good things about the Brenham State Supported Living Center there, 13 of 'em. You could look it up, look up on the HHS website for Texas, find out the closest one. You could start with the closest one where you live, go visit, go visit with an open mind and just see it's a campus. I think there's some big pluses for our folks. Even say to somebody like John who, I mean we don't let him out of the house alone ever, ever. He's not safe if he were on a campus that he got to know. He does know his way around. I know he knows his way around our neighborhood. He's demonstrated that he does. If he were on a campus where he became familiar, I think he could go from the dining hall to his dorm without somebody right by him.

(02:50):

So that's kind of nice. I mean that would be more, he'd be more independent in some ways, even though it's counterintuitive because an institution, technically that is an institution, but in certain ways, John could be more independent at a campus-based place than he is in the community. If assuming the right supports were in place and he practiced and all that, you wouldn't just throw 'em in there. If it is becoming clear to you that the SSC for either financial reasons or medical reasons or some other kind of reason that the SSLC might be looking like what you're looking at, I would say consider it. Consider it. And if you go visit and say Over my dead body, then back. But at least don't rule it out before you've given it a chance to talk to the staff, see what supports they have in place. Because like say, and then I'll just stop the S SLCs didn't always have trained behavior therapists on staff now I think they do.

(03:46):

I mean, they've changed. They've made improvements. So just like I said, Mar, she didn't used to really have a very many people with autism. Now they do. So they, they're making progress. I mean by our standards, they're making progress for our people. So that would be the only thing I would say on that slide. Otherwise, just look what's in your areas. Check the icf. I think I told you, Mike, I was on a webinar with a company that ran ICFs and I came away. I had gone in with a slightly negative version picture of ICFs because of what I'd heard on the street. I left with a very positive impression of ICFs because this man is passionate, he's caring, he knows what he's doing. And I was like, oh, alright, good, good. I can change my mind about something.

Mike Carr (04:28):

And I agree, and I think the onsite visits and the hard questions are super important. What do you do or what are some examples of incidents that have occurred and how have you handled that? What are the biggest challenges and how do you handle those? Are you have any residents currently that require a higher level of need that might be along the lines of what a listener son or daughter

(04:51):

Would need? And just see how they answer those questions. And if they don't, then of course that's a big red flag. And if they say, oh yeah, we've handled that before. Here's how we've handled that situation. It gives you a certain level of comfort. Now the next slide is I think sort of a summary slide. Affordable options around the state. And there are new programs, as Ann mentioned, that do come up. So again, I would go to AI and enter in where you're located and see if it can come up with anything else and then of course check them out. But Ann, is there anything on this slide that you have already covered that you want to be sure and mention something about?

Ann Hart (05:22):

I think so. One thing I would say, if you live in Texas, you're listening to this webinar, contact the Autism Society and connect with us in either a little bit or a lot. But it's a great network, loads of information, we can help you over time. It doesn't have to be this a one and done situation if you don't live in Texas. And this is a little bit back to what I said about before about learn about your waiver system. Some states allow much more flexibility of how you use your waiver than we do here in Texas. So there might be, for example, I think this is still true, don't quote me if you live in Ohio, but for a while I met some people a while back and you might've met 'em too, Mike or I think Hayden who were running kind of a private group home.

(06:13):

They owned the house with their daughter and maybe two other women say just hypothetically. And the housing and the rent was handled privately by the parents, but a professional provider staffed it using their Medicaid waiver. That huge, it was a consortium, it was a housing consortium is what the word I'm trying to think of. So we don't have that here in Texas. I mean, you would have to be really, really creative to do it that way and it would cost you a lot of money. But some states are happy to kind of collaborate with parents to do some kind of hybrid model like that. That's to be a game changer for you. Likewise, some other states have maybe more campus kind of places that would accommodate more severe behavior challenges. I can tell you that I know of one I've been following since the very inception wheat water spectrum. Actually, it might even be two in Sonoma, California that say John Hart, Michael Carr actually probably could get in and go to, but it would cost us a lot of money. But some of their attendant care could be covered with public money,

Mike Carr (07:16):

Right?

Ann Hart (07:17):

So that's all I would say about that. If you live in Texas, contact the Autism Society. We'll keep talking. If you don't live in Texas, really do a deep dive on what you might be able to do creatively.

Mike Carr (07:29):

Yeah, I think we moved twice because of our son and the first move worked out well while he was in school. It was not a solution for after he left school, the last move where we had the University of Texas come in and help us set up a home program, and that became the nexus for J 13. That really worked well. But it's a big lift and it helps to have relatives wherever you do move to that are willing to help you out. I wouldn't put this burden on any relative if they're not willing. It certainly could change your relationship with that relative. But if you've got grandparents, for instance, that are willing to help out and they're still able, or an aunt and an uncle that makes a world of difference besides just the support that that particular program might provide. But I do think this next slide is pretty interesting, and Ann mentioned a couple of things already that I want to comment on and I'll turn it back over to Ann. I think parents' expectations need to align with whatever program you're looking at. And here's the understanding. There is no such thing as a perfect program. And if your expectation is you're going to go into some group home and it's always going to be squeaky clean and there's always going to be somebody right there for your son or daughter, and it's always going to be joyous. I mean, that's not even your own family home environment. So

Ann Hart (08:43):

They're always going to be eating healthy food,

Mike Carr (08:45):

Right? So I think the idea that, look, if we have confidence that the staff is always going to be caring and loving and they're there for the right reasons, it's not just a paycheck. And that's one of the problems we had. The first place we moved is that the school was excellent, but we couldn't find enough folks for the afterschool, the weekend care, all those things that really were there to help out. We found some great people, but we couldn't find enough. And so I think as you consider relocating, as you look at programs, talking to them about the staff and the training, for instance, in J 13, we found the universities that come in like UT and have students that are getting a graduate level degree in special ed or speech or nursing, they're there for the right reason. They've already made a commitment to get a graduate level education.

(09:31):

They've already sort set their sights on this career. There are certain communities like church space communities where folks that have a heart in the right place for serving and trying to help. So looking at things like that in addition to just that specific program, especially before you decide to move, you want something that's sustainable, that's not going to just be a hey for the next five years. That's great. But then if the executive director leaves or if the board changes, can I still have confidence in that program for my son or daughter? I think Ann says something extremely important. You want to set your son up for success or your daughter for success. So the last thing you want to do is put a genre, Michael in a program and they have a good time for a few years, and then all of a sudden it goes downhill and they got to move. You can't eliminate that possibility. Absolutely. But you can certainly be aware and ask the hard questions upfront to try to reduce the likelihood of that. But Ann, is there anything on this slide, the preparing for new housing someday that you'd like to be sure and focus on or mention?

Ann Hart (10:26):

Well, I think the biggest thing here, the slow exit of the solar system, and what she meant by that was you've got a little by little stop being the son of you being the son, and everything revolves around you as a mother or you as a father. And that's an image I could kind of keep with me. If you're listening to this and you have a 10-year-old and you're like, oh my gosh, this is so far away, but what you still can be working on, because keep in mind, my experience with people with autism, it takes a lot of repetitions. I mean, my children who don't have autism needed practice on stuff, and they didn't necessarily love a new situation either. They wanted to practice, but John really need a lot of practice. So even starting at 10 years old, we sent him to overnight camp and they could accommodate him. I mean, we made sure it was a place where they probably were not going to kick him out or send him home from a Sunday afternoon. This is camp, camp that's at the bottom of that list. Camp. Camp check-in would be Sunday afternoon at four, pickup would be noon on Friday, not long. We did manage to squeeze in a couple little trips back in those days when he was at camp, but it really was more about him having practiced being away from home.

Mike Carr (11:40):

You bet.

Ann Hart (11:41):

And I mean, I've known people who've even done it. So that was say five nights, even one night a week or one night going a week or one night a month going to a caregiver's house or going to maybe grandma, aunt, whoever it is. I mean, it could be a paid person. It could be, I'm going to pay you to come to my house and we're going to go stay in a hotel. But whatever it is, it's like you could start at a pretty young age practicing them, managing without you and you being able to handle that. It's back to what you just said about the group of what about this? What about this? What about this? It is like, it's okay, and that's why you're only doing it for one night. How much can happen in one night? And we all have cell phones, right?

(12:24):

But practice the practice build up and that, I think if you really were systematic about starting that young and because think about everything that's happening in that little scenario, they're getting used to answering, following directions from another person, not just their parent. The routine is going to shift a little. You're going to leave lots of instructions, you're going to leave your visual schedule, but it's still going to be a little different. And that is okay because that is life and flexibility to me. I mean, like you mentioned, I don't think John's higher functioning than Michael. John is a little more flexible than Michael would be the biggest thing. I think that makes him easier. If it's easier. I think they're comparable in terms of intelligence and their social skills are actually pretty close. Michael's way more coordinated than John, but John is pretty flexible. And that's some of it's just dumb luck. But we have worked on that. So that I think if for those of you who haven't even considered any of this, start there. Start there.

Mike Carr (13:30):

I absolutely agree. I mean, trying to build flexibility into those routines. I mean, when Michael was growing up, we would take him to different places for family vacations and he didn't always know what was going on. And sometimes it was a pretty heavy lift, but at least he got used to spending a few days at a ski resort that had adaptive skiing like Crest de Butte, and they really took care of him. And it was an ordeal just to get 'em dressed up in ski clothes and then you had to go to the bathroom. You have to take everything off. But that kind of thing makes a big difference so that when they do get older, they've already been exposed to staying someplace else and doing things that aren't part of their normal day-to-day routine. Now, the last slide, where to get more information, and again, this can be updated almost every week probably.

Ann Hart (14:14):

Yeah. Another thing we're saying is, and this would be an, A therapist would advise, push, push their boundaries.

(14:23):

Tiny bits at a time, right? Just a little, little bit. You're not taking 'em from, okay, this is how we do and throw 'em into this whole foreign situation and expect them to just handle it. Nobody would like that. I don't like that. But if you've been prepared and you've done some of the skills and build, and that takes a long time, I guess is what we're both saying, that takes a long, long time. So the Thrive Parent Group is an online support group within the Autism Society. So an online group that's just statewide, all different people every month. It's on the fourth Wednesday morning. The Thrive Group is another online support group that meets monthly. I think it's maybe third Wednesday in the evening. It's on the Autism Society of Texas website. And it's especially geared to parents of 18 year olds and older. Really nice group, super knowledgeable bunch of parents. And then they sometimes plan get togethers for themselves and also sometimes get togethers for their sons and daughters socials, which is kind of fun because that's how a

(15:28):

Good way to make sense. I think they just had an outing at the Lady Bird Johnson Wildflower Center like a week or two ago. Texas Parent to Parent is another nonprofit, not autism specific, but they have a really good Pathways to adulthood curriculum basically. And then periodically they have workshops. So look at that arc of Texas, and you might have an ARC in your area. We have the arc of the capital area in Austin that could be potentially a resource. This Housing Choices website. Susie found this, I think this is what Hale Hale is, the housing for assisted and independent Living Navigate Life. Texas is a really good website. It's a bearable website. It is huge. So get ready to spend some time or call me, I'll tell you how to navigate it, but navigate the Navigating. But it's a very packed website that the state put together a few years back.

(16:20):

If you're not familiar with your LIDDA yet, it's local AL and Developmental Disability Authority. You may have heard of it back in the day as MHMR, and we don't use MHMR for obvious reasons anymore. But if that is in your head, that's what the LIDDA is one way or another, as you move into adult services and housing, you will be connected to your LIDDA. So know that the regional, so know at least minimum. Again, another assignment for today. If you don't know where your LIDDA is, find out. And then this is just a scale, like an assessment you could do just to sort of see where your son or daughter is kind of in terms of independence. And it'll give you a picture of where they really need to work. I think that would be another reason, going back to our thing about bringing other people into the mix, whether you're bringing people into your house or into, they're going to a different place and working day programs.

(17:15):

Schools should be working on this. But a lot of times my experience, the parent child dynamic is such that none of our kids, and I would include my 30-year-old daughter, they're not as independent when they're home with their parents as they are with somebody else. I mean, my daughter is highly accomplished. I'll just leave it at that. When she goes, comes home, she lets her dad cook her dinner, she lets me do her laundry. You know what I mean? It's just too comfortable. It's just too comfortable. And I don't say no. I don't say no because I'm her mom. So that's just something to think about as you're thinking. We talked about residential, but a big piece of residential is independence. And be aware of yourself. Be self-aware enough to know you might be. I mean, I know I have held John back in the Independence Department and I've had to check myself.

Mike Carr (18:06):

Great comments. And Ann, I think you've just shared a wealth of knowledge and expertise. Very last slide. Hope streams and encouragement. Get that note of optimism I think that you wanted to leave parents with. So is there any closing remark that you'd like to make to anybody that's watching or listening to this?

Ann Hart (18:22):

Yeah, well just start. Take that first step up. Mount Everest network, network, network, network. Knowledge is power. I am someone who believes that knowledge is power. Even if some of what you find out isn't what you wanted to know, it crushes you a little bit, but it's still better to know. It's still better to know what you're dealing with. Use the resources you have, whatever that is, what your family has. Don't get bogged down in what you wish you had. I mean, unless you're going to join forces, like say Mike and Kay to join forces with some other people, create your own thing. I mean, that's reasonable. And or maybe connect with a new nonprofit and see if you can help them move along a little faster. Something like that. But don't just let the fact that you have limited resources of any type. Stop you. Don't let it paralyze you that you don't have everything that you would like.

Mike Carr (19:19):

So thank you guys for listening and watching. If you have any questions, please reach out to me and I'll be happy to get Ann involved too. You can reach me at mike@autismlabs.com. And of course, Ann's very active in the Autism Society of Texas and has been for years. So Ann, thanks again and thank you everyone for watching.