Autism Labs

Supported Living for Adults with Autism: A Parent's Guide to Housing Options

• Autism Labs Community • Season 4 • Episode 21

Share episode

In this episode of Autism Labs, Mike Carr and guest Ann Hart explore the complex landscape of housing options for adults with autism and other significant support needs. They emphasize the importance of preparing early—especially getting on Medicaid waiver waiting lists that can stretch up to 20 years—and developing daily living and communication skills to increase future independence and placement options. Ann explains how Medicaid waivers like Texas’ HCS program provide essential funding for residential and support services, and how combining resources such as SSI, Medicaid, and private pay options can expand opportunities. The discussion also highlights the variety of housing models available, from group and host homes to private communities like Marbridge and Brookwood, each with its own strengths and challenges. Ultimately, the episode encourages families to be proactive, explore all possibilities, and tailor solutions that best fit their loved one’s unique needs. 

Mike Carr (00:03):

Well, welcome to another Autism Labs podcast. I have a very special guest today. This is Ann Hart. And Ann, why don't you go ahead and introduce yourself to everybody that's watching or listening today.

Ann Hart (00:12):

I'm Ann Hart and I'm the mom of three adult children. My eldest John is 40 and he is severely impaired by his autism. I would say he and Mike's son are buddies and they operate similarly, I would say, and that's part of how Mike and I got to know each other was through our son. So that's one important thing that's relevant today. And then the other big thing is I have volunteered for the Autism Society for, well really if you count my Autism Society of Florida experience. I've probably been volunteering for the Autism Society off and on for 35 years, but I've been very, very active at the affiliate here in Texas as we've grown. And I'm happy to say I am a cheerleader more now than a full-time unpaid employee like I was for a while. But anyway, I'm still very involved, which means I learn a lot and I meet a lot of people and I talk to a lot of parents who are in, we're all in similar boats in a lot of ways.

Mike Carr (01:11):

And that's really why we wanted you on today, Ann, is because you've got, you've fielded so many of these questions

(01:16):

From

(01:16):

Parents of autistic kiddos and where they are on the journey. And I've got the first slide up on the screen now. What we wanted everyone to know is what we're going to talk about today are housing options for autistic and other adults with complex special needs, especially focusing on those that are higher support like your son John, and our son Michael. Our son Michael is, he's nonverbal. John is higher functioning than Michael, but they both require help throughout the day. It's not like they can just go off by themselves and live independently. And so now I'm going to switch over to slide two. And Ann, if you just want to go through the things that you want to cover today or we can talk about today and then we'll get started.

Ann Hart (01:55):

Okay. Basically slide two is just kind of setting a tone. Mike and I are going to be really honest. We're going to do our very best to be encouraging and optimistic and positive. And we are also going to be very honest and sometimes that we may not give you as kind of comforting information as you would want us to. We're going to do our very best to give you a clear picture based on what we know, which is I would say between the two of us a lot. It's not everything, especially when it comes to Medicaid waivers. I know a lot about Medicaid waivers. John's been on a Medicaid waiver, one or another Medicaid waiver for 20 years. And I had a glitch with payroll just this past week because I missed something As an SSI would say same thing, lot of information to try to acquire.

(02:43):

We will not be able to answer all of that. We can't do that in one sitting, but we can give you a picture. Likewise, we can give you a picture of what the housing options are, what they look like. Some different examples. We cannot cover every single possibility that you might be considering. I think I'll go ahead and say it now is we're going to do our best to help you prepare without being scared because I don't want to scare you. I want to help you be prepared, and I want you to start preparing if you haven't already.

Mike Carr (03:12):

And I think that's great. And a couple things just to mention to folks, because Ann and I and Kay, who's my wife certainly has done more of the heavy lifting. I think moms in general probably do more of the heavy lifting than dads do, but one of the things to think about when it comes to waivers is you can't get on the list almost too early. I mean, in Texas, depending on whether it's HCS or class, it could be 15, 20 years from the time you sign up unless you can get a medical diversion, which some cases you're able to, in some cases you're not. But if you're watching this, and even if you're not in Texas, a lot of states will have a waiting list, at least from parents I've talked to around the country. Not all do, but at least check out the waiver. And if there is a waiting list, I think it would make sense to get on that sooner rather than later.

Ann Hart (03:57):

That's a really good point, Mike, is that all states have some Medicaid waiver system, right? And it could be looked different, might even have slightly different name, but they are all taking Medicaid and money from taxpayer money, but they get it from the federal government. It gets siphoned out to the states and they have autonomy of how they use it for among many things people with disabilities and different states do it differently, but they all have some kind of system like that. So wherever you live, if you haven't looked into it already, that's your first piece of homework from this webinar is make sure you have some sense of the Medicaid waiver program in your state

Mike Carr (04:35):

For sure. And now what we're going to do now, we're going to go over to slide three in our deck and our focus for today is housing for autistic and other adults who need moderate to high levels of supports. I'll let Ann talk about this. I mean, Ann and Susan are the ones that put these slides together. But again, this is something that you may think this is down the road ways, but I don't think here, again, thinking about what happens when your kiddo ages out of the school system at 22, and even if they can live at home for a while, at some point you may want to look at an alternative when you're really just too old to take care of 'em. So Ann, anything you want to talk about off of this slide

Ann Hart (05:11):

And kind of in general, but just that there is a range. There are some different options for different kind of people, but in general, I mean I think the big takeaway is the last line on this slide is the more support your family member needs, the fewer options there probably are or the more expensive the options are and they might not all be covered by public funds. So I guess to start now, if you're way ahead of that or if you feel as if you're way ahead of that, one thing you could do is really look at what you're doing with your son or daughter or sibling, what they're learning, what you're working on at home, and are you working on independence? Even as simple as toileting, showering, are they independent in hygiene, meal planning, anything you can do to increase their independence. And then I would add, you probably echo me on this, Mike, if there are challenging behaviors, work on those, work on those. I mean, you might not be able to eliminate challenging behaviors, we're in the autism world, but a person with fewer challenging behaviors is going to have more options in terms of where they might stay, even what day program they might be in because there's interim steps that we take.

Mike Carr (06:27):

I think that's a great comment and I think one of the things to be aware of is before you age out the school system, you'll see a transition coordinator role in most high schools and typically between 18 and 22, they're going to help your child get ready for those independent skills and hopefully mitigate behavior. And we've seen and a lot I think of other parents that probably Ann and others have talked to have seen is one of the biggest instigators of that kind of behavior is communication challenges. And so our son's nonverbal John can type away, it's unbelievable.

Ann Hart (07:02):

He can type, but even then it doesn't always just flow if he's nervous or if he's uncomfortable. I mean he has communication challenges, but yes, he can type, yeah,

Mike Carr (07:12):

But just think about if you could not understand what was fixing to happen or what the schedule was for today or while all of a sudden it was Saturday or Sunday and so you weren't in your normal weekday routine and you had no real way to ask that question or to communicate your anxiety, that often can be the reason that you see some of these behaviors. It's not so much that they just aren't automatically going to have that behavior is because I don't know what's going on. I'm stressed, I'm anxious, I don't understand why I'm not on my normal routine. And so any tools that the transition coordinators or that you as parents can put in place, like our son uses an iPad and he's got a bunch of icons and while he can't really express an emotion, he can certainly go through a series of icons and say, I want water or I want bed or I want cake, which is one of his favorite things to say. So I would say in addition to all the life skills that Ann mentioned, trying to make sure your school transition coordinator or you have some help improving those communications might be a good thing. But I don't want to stray too far from the topic, so I'm go to the next slide, which HCS funding.

(08:24):

Ann, can you tell us a little bit about what's on this slide and some of the recommendations that you would have?

Ann Hart (08:29):

So HCS is home and community services. It is many people call it like the gold standard of the Medicaid waivers. Here in Texas we have multiple Medicaid waivers. HCS is the one that's geared the best to helping an adult with a severe disability. And often, I mean it's set up that it's for intellectual disability as well, but many, many people with autism would fit into the IDD intellectual and developmental disability category. Don't get too bogged down on that. If they are severely impaired by their autism, they're probably going to qualify for HCS once they get to the list. So John just is on HCS now. Well, and I think Michael might be on HCS now. So we had been on a current waiver and then years and years went by and we got on HCS. So I'm still learning HCS, but we're using currently our HCS funding for attendant care.

(09:31):

John still basically lives at home. We pay attendance using the HCS waiver, the big change. We had been doing that already on class, the class waiver. And so we have the same employees that we had before. Pretty much John's on his same schedule he was on before, but as soon as he went on HCS, they got a big raise. Is that a little crazy? Of course it is. But that was a big, big plus for us because now these employees had been with us for a long time and we're just wonderful people and just delighted to start making more money. But in general, I think I believe that when you can pay someone a higher rate, it's going to be easier to find good people and keep good people. And that is if you're running an attendant care consumer directed system on your own, that's key.

(10:20):

The employees are the whole thing together. So that's what we're doing. Now, you can also use HCS for a group home and there are numerous HCS group home companies around probably, maybe not as many as you think there would be, but they're around and you can get a list from your local IDD authority. And then basically, I mean we had a call just last week at the Autism Society and I almost started laughing. I mean it's all about what your expectations are. I mean, wasn't talking to the person, I was at a team meeting, but their list of what they wanted in a group home was, I mean, it was really lovely. It would look like this and it would've these kind of people and it would be in this neighborhood and it would be on the bus line. And it was like, of course it's what we would all want.

(11:06):

It's what we would all want for our family members. You might not be able to get everything you want in a group home, but there are good ones. And I would say if you do group home, just like if your grandmother was in a nursing home or your parents had to go into some kind of facility, you're going to keep an eye, you're going to maintain good communication. You're going to visit, you're not going to just drop your son with autism off at an HES group home and then never see him again because that's not how families work. Another program is host home and there are people who get qualified state to run a host home, which means they could then have a person with a disability person with IDD move into their home. And I'm not exactly sure how, and they would get paid somehow.

(11:55):

I'm not exactly what the pay structure is, but they would get paid. I met a woman one time at a conference who she and her partner had three women with Down syndrome who were all on HCS and who lived with them, and they lived as a family basically. They lived as a family of five. And then one of the ladies, actually one of the women with Down syndrome died. So it was just as if it was very sad, but it was just as if a member of your family died. They're very close. They take vacations together. And I think for most, maybe not all three of 'em, but they were in touch with the biological parents. Still the women just didn't live with them. And I've known a few other people who did host home and it's with success. That's basically three. Those are the three models that HCS is set up for. You do have to be on Medicaid going in. So typically as someone would be on HCS and SSI and then the SSI is used for part of the expenses as well.

Mike Carr (13:00):

I think that's great. And just a couple things to comment on there. You want as much money as you can possibly bring to the table,

Ann Hart (13:07):

Right? Yes.

Mike Carr (13:08):

So waivers help a lot if you get the waiver. If you can't get the waiver, this last bullet point, you might be able to get a diversion slot if there's a medical emergency. Our son has seizures and so that helped to move up to

Ann Hart (13:21):

Sometimes a safety, safety emergency, 85-year-old mother and a very super active, I mean 60-year-old person with autism. I mean sometimes if it's a dangerous situation, I mean, not that it's easy but might be more straightforward to get the diversion slot, but it can be for behavior as well, I guess is the point.

Mike Carr (13:39):

And for anyone that doesn't know what SSI is, I mean social security benefits aren't going to give you as much as the HCS waiver is going to give you, but that's available too. So don't feel embarrassed, don't feel bad by getting funding from any source that's out there.

Ann Hart (13:57):

In

Mike Carr (13:57):

Some cases, we've seen cases, situations where a parent will work for a company that just has incredible healthcare and they might at least provide hours for therapies. So you might be able to get some support from private healthcare for a while and then that maybe will fade away. That's usually not going to be forever. But whatever you have, whether it's health insurance or social security or you can get on a waiver or set up an able account. There are lots of ways to skin the cat, but usually the more money the better. Now this next slide is about private pay, and I'm going to let Ann, I'm going to go off camera just for a second, but I'm going to let Ann take you through some of the options starting with marbridge that are in the Texas area that you might want to be aware of. And certainly you're in other parts of the country, you can use chat GPT or something to ask a question about what's available in your local area. And recently the AI tools like Chat, GPT, like Gemini Pro have gotten a whole lot at knowing what's available locally. They may still hallucinate, so you've got to still check 'em out if they don't make up. But Ann, go ahead with this slide that starts with private pay.

Ann Hart (15:00):

So MARBRIDGE is an example, and there are communities like this all over the country. MAR is pretty big. It's a campus basically it's a campus I've visited there. It's very nice and they have a few, maybe two or three different kind of housing options depending on the level of independence of the person. And then they even fairly recently added a nursing home component for, because our family members get older and then they start having just like everybody else get older, and as they move into old age, they have arthritis or dementia. That could be a topic for another day, the dementia. But aging brings new medical issues, put it that way for all people, including people in the IDD population. And marbridge realized that. Now, what I would say about marbridge, they do, it's all private pay. Now you could of course use the person's SSI, you could kind of receive that and then put that back into the mix, but you would add private money for that.

(16:06):

John probably needs more support than they're equipped to give. But I would say in general, what I know about marbridge is they have made great strides in being able to accommodate behavior challenges. But I would, if your family member has, if you're considering a place like marbridge, not just, and I'm not picking on Marbridge, I think they're doing really good work and they have done really good work for a very long time. But the behavior challenges, our guys and gals display, sometimes they're more than they could handle whatever you do. Speaking for myself, I do not want to set John up for a situation where he gets kicked out. I think that would be worse than not going at all. So we've moved pretty slowly forward for that and other reasons, but anyway. But if you're looking at a campus like that, using Marbridge as the example, ask a lot of questions.

(17:01):

Ask a lot of questions. If they have maybe a camp situation in the summer where you could just have your family member go for a week or a weekend, take advantage of that, see if you think it's a fit. I mean, it's not that different when you're picking a college or you're non-disabled child. It's about fit, right? It's not about this is the best. I mean, we get calls at the Autism society sometimes about any number of things. What's the best, what's the best school, what's the best a BA clinic, what's the best housing situation? I personally do not believe there's no perfect and there's no best. It's what's going to work best for you and your family member, of course. So ask a lot of questions, do your homework. So that's one example that's in South Austin. Like I said, great reputation. It was really more geared for Down syndrome for a long time.

(17:49):

And now I think they've opened up in more recent years. 29 acres is kind of a hybrid model up in Denton or Well, yeah, near Denton, similar price. And that's newer. It's much newer, but I think they're doing really good work. Also, I think you could even do just part of a day program even if you didn't live there. I know a woman who, or a family who has their family member with autism, they're very happy, very, very happy. They ended up moving from Austin to Dallas to be closer because again, wherever your son or daughter is, you probably want to have access to be able to see them, see them on a regular basis. And unless you're going to get on a plane every month, which I've known people who have done that, it's based on Brookwood in Houston, which has been around for a very long time.

(18:34):

Brookwood in Georgetown is newer. They've started with the day program and now they've got some residential ask a lot of questions about can they accommodate behavior? Maybe try the day program first and see does it seem like it's a fit J13, Mike knows a lot about that and I will circle back on that, but that's one that we're excited about in Austin because they are focusing on the adults with the behavior challenges and they're committed to serving that population, which is not the norm. I mean, I will say my experience in general is program can fill their slots with people who don't have severe behavior challenges. They usually do. And that makes sense, right?

(19:21):

I don't know another way to say it. I just don't know another way to say it, but I haven't seen very many programs that will say, okay, we have two people on our list. One looks like he'd be a breeze, one looks like he'd be really difficult. We're going to take the hard one. That's not the norm. There might be some places that would be like that, but I don't think there'd be very many. Down Home Ranch is a place in Elgan, Texas that started geared to Down Syndrome, hence like the name indicates, but they've been open to people with other disabilities including autism. And then Beacon is a new nonprofit in Houston. And I'm encouraged, I did talk to a woman, a really sharp woman who was on their board one time, and I was like, Ooh, sounds good.

Mike Carr (20:05):

Just briefly, I think you've done a great job of covering some of the programs that are in the Texas area, but we couldn't get Michael into Marbridge. We tried big, they came down and looked at what we were doing at our home program and they just said, no way. And so we don't have a residential program yet, and it's going to be a while before we do, but we do provide some day programming and some overnight and respite care. And we really do try to cater to the ones that can't get into the other program or have been kicked out in terms of behavior. And just so parents understand what we're talking about, because a lot of parents don't want to share right up front the kinds of behaviors that, I mean, we've had a situation where one of our community members, like Michael just slugged an attendant in the face, punched her in the face, and he wasn't kicked out. I mean, we had protocols in place. We didn't react quite as quickly as we needed to. We revisited what the antecedents were, what caused that kind of behavior just, but he's still in the program and we've had other situations where it'll be biting or scratching or kicking or headbutting by different, and these are behaviors that if they occurred very frequently at all, you'd be kicked out. Yes,

Ann Hart (21:22):

Yes.

Mike Carr (21:23):

And so our feeling is because, and this is not just from altruism. I mean, we're selfish here because Michael in the past has had these kind of behaviors. We wanted to make sure that J13 staff and the protocols and the training could accommodate them. And so far, now again, we don't have residential yet, but at least for the day programming and even the respite overnights, and we just finished a weekend where we had three guys from Friday, late afternoon till Sunday morning. So they spent two nights and successful. And in some of those folks, all of them, quite frankly, from time to time, do have aggressive behaviors. So I'm not saying we're going to be able to nail it absolutely for everyone forever, but that's sort of where we're headed. I do want to talk about though this next slide, which Ann, I want you to sort of take briefly folks through this, SSI and Medicaid so people sort of understand some of the options there.

Ann Hart (22:14):

As I'm looking at this slide, it's some overlap with the previous slide,

Mike Carr (22:17):

Right?

Ann Hart (22:17):

So SSI is supplemental security income. It's a check for all kinds of disabilities really. It's not even just developmental disabilities, all sorts of disabilities who do not have enough money in the social security system to just get social security. Most people who have worked a long time have enough whatever quarters in or they've put enough into the system, they get a check kind of drawn and computed off what they put in SSI is for people who are basically too poor for that. They may be worked a tiny bit or whatever, but they don't qualify. So it's a check. I think the max, I think what John gets is $943 a month, something like that. It's under a thousand a month here in Texas. There's some variety from state to state. So that's great because you can use that money toward their needs. It's supposed to be for basic needs pretty much. And it comes with Medicaid, so that's really important. Some people don't even get a full SSI check they might have a part-time job, so they get, their check is lower, but they still get the Medicaid, which is huge. Which is huge because all people need healthcare, right? I mean, they all need coverage for healthcare. So between the SSI and the Medicaid that does that, we talked about it could, if you took your SSI and your Medicaid and got the HCS waiver, then you could into a group home.

(23:49):

If you only have SSI and Medicaid, you could possibly go into ICF, which is an intermediate care facility. We might have it on a slide coming up, but it's six to 13 beds. Typically it's closer to the sixth than the 13. So not a huge place. These other places on here. So Live and Make is a new apartment building in Austin, run by Imagine Arts that I think you could just about, it's affordable. It's an affordable fee structure that you could just about make it there financially with SSI. And then you might need to get food stamps. A person might try and get snap, but you probably qualify for snap. But I mean, I think the rent, trying to make the rent affordable with somebody on SS, I could live there. You could see how we put SSI and Medicaid, but then the way you see the slides, it's almost, if you don't have HCS, not many options.

(24:47):

Not many options without also some other money coming in. I could picture somebody with SSI and another person with SSI rooming together, and they might be able to just about make it thinking slightly outside the box, but people with disabilities who are on SS, I could conceivably qualify for a Section eight housing voucher, live in a subsidized housing apartment building through their local housing authority. Plenty of people with disabilities live in the housing authority, but we maybe don't think about it for our people with autism, but depending on the person, we would be able to manage that. Or I even think there's an affordable housing, an apartment building in my neighborhood that it's really for 55 and above. But if you had a 60-year-old with autism who got SSI and had Medicaid and was pretty independent, that might fit. Even though it's not really designed for people with disabilities. I mean, again, this is art. Michael wouldn't work for John, wouldn't work for Michael, but some of our, maybe even our people have been level two, especially if they then had helpers coming in to check on them. Maybe limit yourself. That could be part of this message of this slide. Don't think narrow about housing. Think broader. Think broader, especially if you think you have someone who could get by with not 24/7 supervision.

Mike Carr (26:20):

We're going to go ahead and stop right now for this week's episode since Ann has given us so much great information. And we'll go ahead and continue this recording for the next episode about the same length where we get into a little bit more detail about housing. So thank you so much for watching episode one of the two-parter with Ann Hart, past president of the Autism Society of Texas, and a mom of a 40-year-old severely autistic son. See you next week. Bye-bye.