Why 350,000 People Are on a 20-Year Waiting List in Texas

**[00:00:00]** Hello everyone, my name is Armando Prescareno and welcome to the web talk show. Today on the show we have Mark Olsen from LTO Ventures. Welcome Mark. How are you today? >> I'm just great. Thank you for having me Arando. >> Oh it's my pleasure. I heard about LTO Ventures and everything you were doing and I was amazed like we discussed last time on our call. This is something I didn't know was a thing and I would like to really explore what this really means and what people can get from it. So can you give us a quick background on who you are, what your background is? >> Wow. Uh okay. So uh my uh if you go way back, I have journalism degree and so I was a journalist for years that evolved into working for a company that did market development. So we worked with companies to develop markets for either the company itself or their products. Um so those two expertises uh were very beneficial to me. um coming out in 2008 or so um was working with a financial services company and uh wanted to do something different that had you know real meaning and real impact uh particularly to to take care of my daughter at the time I was an only parent and so that's where the idea for uh LTO Ventures came around to provide a solution for her and um you know it's just it has grown grown uh significantly uh since that day. Uh uh the real turning point for us as an as a a consulting entity was uh 2018 2019 um because of some changes at the federal level and the regulations regarding how you can use waiver funding to pay for individuals with disabilities **[00:02:00]** to live in a home their own. And and so that's uh so we just kind of grew it from there. >> Amazing. And for those who are listening, if someone were to read about LTO Ventures, we see the term ID and many of us won't necessarily know what that means. Could you elaborate on ID, what it what it means and what it actually is? Yeah, so uh it's interesting. So really the proper umbrella term is developmental disabilities. And so developmental disabilities tend to be disabilities acquired at birth and that will persist through the lifetime of the individual. Um now uh that doesn't mean those things can't be treated, improved, uh accommodations can make life significantly better for those individuals. Underneath that falls intellectual disability and this is the definition at the Centers for um at CDC, Center for Disease Control. So that's the official government uh definition. Now to be fair, also under the umbrella of developmental disabilities is autism, down syndrome, uh ADHD, hearing loss, vision loss, things uh things like that. Um the industry by and large uses the term ID or the I'm sorry, the the acronym ID to represent intellectual or developmental disabilities. That doesn't mean you can't have both, >> but we don't it's not an automatic in it's not automatically inclusive, if you will. >> And so, um, so, uh, because intellectual devel or developmental disabilities is a mouthful, we just say ID. Now, some people will will write it differently. It'll be I slash. Yeah, it's fine. I don't really care how you write it. Um, some of our projects prefer to only use the term developmental disabilities. That's fine. Um, some choose to include physical disabilities as part of, uh, the model that we developed for them. **[00:04:00]** So, uh, but that's just sort of the basic bucket. And, uh, if you're looking for a statistic, there's, uh, just under 8 and a half million individuals with ID in that's impressive. Is what happens when someone with ID or developmental disabilities or intellectual grows up? Because I think we all envision when we think of it, oh, when they're kids and there's programs at school and at other places, right? uh what happens when they grow up and they become adults? >> Uh so you know there there a couple different buckets and just for the purposes of clarification um ID is not typically considered a mental health issue like schizophrenia, bipolar and a variety of other conditions. It's really there's sort of two separate buckets >> um if you will. Um that doesn't mean that school system doesn't address both and they do um and we're very familiar with that. Um, but in general, you you have the right uh under the Individuals with Disabilities Education Act to go to to get your free and appropriate public education at a public school until you are uh uh what we call 22 years minus a day or age 21. Now, certain states uh address that differently in so far as uh if you start a school year at age 21, you can turn 22 but still finish that school year. Some other states don't do that. Um they yeah, if they know you're going to turn 22, they might not enroll you in that particular year. Uh my daughter's birthday is in November and so she was still 21 when her eligibility ended in the school system that we were part of. It's fine. Um the really important thing to consider with that is that you get a **[00:06:00]** lot of free services through the school system, particularly the public school system. And uh when you age out, whether it's 21 or 22 depending on your state, you lose all those services. And so we call that falling off the cliff. That that's terrible. Why why is that why that age? >> Um that's an excellent question. Um you know 18 is adulthood illegally across the United States. 21 um is sort of another uh representation of adulthood. I guess um uh I'm sure there's some historical reason for it that I could look up and figure out. I honestly I don't know. I just work with what exists >> uh in the regulations. >> Well, but it makes sense. So 21 being the age people can drink and make some other decisions and things like that. Perhaps that's like okay this is well we need a limit wherever there's there must be a reason like you said. We'll we'll find it out. Now, falling off a cliff sounds very bad. Um, and I en I envision for parents and for for kids, adults or whoever's going through this phase, What does one do after that? Especially if you've been leaning into these services for so long. >> Well, you know, particularly in autism, we call it a spectrum. But you can think of intellectual or developmental disability as a spectrum. And so, you know, every individual is different. Mhm. >> They can range from completely medically, behaviorally dependent on professionals 24 hours a day, 7 days a week, 365 days a year, or individuals that I know who are diagnosed with autism, for example, who drive, hold full-time jobs, make a very successful living, they marry, they have families, they have very successful careers. Um, one of my **[00:08:00]** good friends that I worked with has a diagnosis of autism and she is a recognized scientist contracted with the Department of Defense uh on a variety of very sophisticated um issues and her her science is amazing. Um, so it's it's a full range. Um, where a lot of unfortunately where a lot of individuals who age out of the school system end up is back on their parents couch. um there is uh an incredible shortage of things for them to do during the day, particularly if they are more impacted by their disability. Um so just to be clear, a lot of people use the term high functioning or low functioning for adults with disabilities. I don't because the individuals with disabilities themselves don't like that term. >> Um I mean, what does it mean, right? Um uh I know an individual who's a nationally regarded public speaker who uh if he hears a wrong sound or has a bad moment will go into a full-blown panic attack and meltdown in a public place. Right? >> Is he high functioning or low functioning? Right? So we use the term uh more or less impacted or um require more or fewer supports. >> Okay, that makes sense. So um so both my daughters uh require more supports um they are more impacted by their their disabilities. Um uh you you know for them in in a lot of places uh a day program uh someplace you can go from 9 to 3 or 8 to 5 you know whatever however the program is set up uh may offer a variety of activities based in a facility. I don't necessarily like the term facility, but that's a fair term. Um, or out in the community or a blend of **[00:10:00]** those two. >> Um, individuals who are less impacted may be better able to work in a regular job, >> um, or in some sort of supported employment, right? Where they're working, they're making a wage, um, but they have supports around them to help them to work. Um around here it's very common to see individuals with disabilities working at our grocery store. >> Um HB uh in Texas is very very supportive of uh individuals with disabilities. Um provides a lot of work opportunities for them. Um but there are variety of places that they may work. Of course, the big consideration there is if those individuals are receiving uh benefits >> like um SSI, supplemental security income or Medicaid supports. Um you can't really make very much money um before you lose those. And so that's a really difficult tradeoff for a lot of folks um because nobody wants to lose the Medicaid, >> right? It's um you tend to have more doctor needs uh more perhaps more pharmaceutical needs and you know that's what pays for it. So um but it's uh it's all you know it's a spect it's a four-dimensional spectrum if you will right so to see if I get this clear based on where they're more impacted or less impacted they might need more care and so during the day this is for someone completely outside the space that's might listening to this sometimes we forget like literally it's like when you have kids you can't leave them at home to go to work, you have to have a way for them to do something during the day and be looked after sometimes at at like at even higher ages. So you you talked about a shortage. So what does this mean? **[00:12:00]** And when when people fall off the cliff, age out, they there are not enough centers or places that can offer these sort of day programs or activities or support. >> Yeah, there's not remotely enough. Um I'll give you an example. So we did a survey a year ago here. Uh, so we're in Bernie and and we did a survey of uh families in our area and I'll call it southern Kendall County where we reached out a little bit beyond Bernie area and we had about 40 families who responded to our survey and we said, you know, what do you need during the day for your son or daughter and and there was a there was a program that had about a dozen individuals in it that went from 9 to 3 days a week. And what they came back and said is we need 5 days a week. Like I need to be able to drop them off before I go to work. I need them to be productive and engaged and um you know learn something >> um all day and then I need to be able to pick them up at five, right? When when I get when I get done with work, right? Because you know what you sort of were alluding to um particularly with individuals with higher support needs is one of the spouses gives up a job >> or finds a way to work at home, right? Um you know, I work in an office. I work also work out in the community. My wife trains AI systems and so she is able to work at home to do it but uh her work day is definitely impacted when one or both of the girls are at home um **[00:14:00]** because the distractions are too significant um to be able to work. And so um you know that's the calculus that every family go through you know trying to figure this out. day programs are um there aren't enough of them. U there aren't enough people willing to to open. There are some excellent ones in this area um that we know of. We're forming our own uh because we recognize the need. Um but yeah, there's there's, you know, there's not enough. It's it's um it I mean, it's a business and so you you have to be able to run a business that is going to be sustainable. uh it's not just a hobby to get a bunch of kids together for, you know, 6 hours a day. It's a it's a real business and there's real money out there that can help pay for it, but you know, there's like with any business, there's startup costs and operational costs and all those good things that go into it and you still have to make it work. Um you know, there is a there was a push uh oh gosh, I don't remember how many I want to say back to maybe 2014. Um there was uh the Workforce Innovation and Opportunities Act was passed that has been uh really a driving force in trying to get individuals with disabilities into competitive integrated employment. >> Mhm. >> Um as the as the first and preferred outcome um for how their uh support money is is going to support them. Mhm. >> Um but there are a lot of individuals who uh you know integrated employment is one thing. Competitive integrated employment is a is just you know um kind of a bridge too far for them. And so **[00:16:00]** uh there are a bunch of great nonprofits out there who are trying to create opportunities for that. Um it used to be that your option was either a day program or what was called a sheltered workshop. Um, and a sheltered workshop was a place where you could go work. Um, you made a specialized wage. Some people call it a subminimum wage. It tended to be less than the minimum wage. It often involved repetitive peace work. >> Um, but it was in an environment that uh you could get the supports you need. You were around individuals like yourself. Um, as with anything, some of those businesses ran very well and the individuals who worked there loved their lives and they were perfectly happy. money wasn't really an issue for them and they just wanted, you know, uh and then there were some that were not run very well and um uh so there has been a move to to close sheltered workshops um to emphasize competitive integrated employment for individuals. That leaves a lot of individuals uncovered and and un and and unserved or underserved. And so you one of the things we're trying to do is fill that gap. >> When we look at these day programs, >> Mhm. >> I'm trying not to make a big assumption here, but is it in ID? Let's say someone is moderately affected, wherever that spectrum might be. Sure. that they're right right there about to be in the part of the spectrum where they could work go out in the world etc. But they might just need a little more time, right? So let's say right after that 22 year, maybe two more years or whatever, if they have access to a specific type of day program, **[00:18:00]** they could just sort of get over that hump and get out there. Whereas some they're completely in a different part of the spectrum. Am I understanding properly that perhaps these day programs not only keep them busy, but could bridge that little gap of getting them from having to stay practically forever being taken care of or jump to now I can be doing something on my own. >> Yeah, you're you're um you're exactly on target with that. So, you know, just as I mentioned that some sheltered workshops were good and some not so good. Some day programs are good and some are not. not so good, right? >> Um the ones that that you look at that really look like parking lots for individuals like drop them off, keep them fed, keep them happy, hand them back, rinse and repeat, right? I'm not a fan of that. >> Um even for individuals who are significantly impacted. Now, I happen to know a place in Nevada that I've um been friends with and helped support for many, many years who deals with the most significantly impacted individuals. I mean, these are individuals who are in wheelchairs. They'll never not be in wheelchairs. They require feeding tubes. They are very, very significantly impacted. And from that standpoint, um you're not going to be out in the community doing a bunch of things. But but there are things that you can do that are more supportive and more engaging and more uh any individual no matter their their their level of disability wants to continue to grow, right? They just don't want to be fed and and you know get appropriate sunlight and and you know everybody wants to grow and in their own way. >> Um there are **[00:20:00]** day programs is kind of a broad term >> um or dehabilitation is the other term for it. Um there are some who are really focused on growth of individuals. To what you're to your point, right? >> It's absolutely what we're going to be doing with ours. Um uh I want to be out in the community 5 days a week. I want to be I want individuals to, you know, not just going and having lunch at a restaurant or maybe, you know, if the weather's bad, you know, walking around a mall, but I want them in volunteer opportunities. Um you know, learning skills. you know, our our pipe dream down the road um like a phase three maybe is to develop a microenterprise center with a bunch of little microenterprises in it that all do different things. And so, you know, over the course of a day or over the course of a week, you might go into each one and do an hour or two and each one has a completely different skill, completely different outcome if you will. And, you know, figure out where your affinity is. figure out where your skills are best adapted, you know, all with the notion of helping you to learn uh what you need to, you know, to live the most meaningful life that you can, however you want to define that, right? And you're right, there are a couple, you know, there are some individuals, they get to 22, maybe they need a couple of years, maybe it's um social skills, right? They're they just need to improve their social skills. It might mean um sort of understanding how you're you know what it means to have a job >> and how to perform in a job, **[00:22:00]** right? Um it's showing up on time that's doing a particular kind of work. Um some great training opportunities. Um there are funding streams available, you know, for this uh through states um and through other nonprofits. And so yeah, those opportunities are there. Are there enough of them? No. you know, there just aren't um um there aren't uh you know, sometimes it just comes down to money. Um but there's there there's some really creative people out there right now. And if you look hard enough, if you research hard enough, um as I do as part of my job, um I find all these really amazing ideas and things that that um people are doing. I really like the microenterprises idea, It works because everyone has something that makes them shine. I've was talking just the other day, there's this individual who is just not socially what you would say like everybody else, but he's fantastic at programming, etc. and I get on the phone with him to ask him a question and you get the type of response that you would get. However, once we start talking and get into the technical aspects, it's like he opens up completely and this is a grown man and he's it's just a different person completely when he's in his essence, right? And so, so to your point of the microenterprises, that's that's fantastic because there must be something that they really enjoy doing or they're really good at that specific type of thing and just getting them going and exploring and seeing what that is might inspire them and get the brain activity going and get the muscles going and and just leads to so many other things and then the rest of them seem that see that **[00:24:00]** they're happy and then endorphin everything, right? So that's that's great. Is that something that's being done anywhere else? I I would love to tell you that I created that idea. I didn't, you know, I I I I don't want to say necessarily I steal ideas. Um I learn from other people who are doing great things and try to apply it. So there's a place called Extraordinary Ventures in Chapel Hill, North Carolina. And and that's where I first encountered that. And um I know the founders of that. And so they were they took uh control of um I think it was a bankrupt uh event center. >> And uh and so their notion was they were going to read the rehabilitate use as a job placement place for individuals with autism. And so it was on one level. Um they got that all cleaned up and then they discovered on the next. So it's on a hillside, right? So you you can't get to the side the lower level from one side. You can get to it from the other. We're sort of where they had a parking lot. What they discovered was this really interesting space. They cleaned out all the junk that was in there and bunch of little rooms underneath and uh they came up with the notion of multiple microenterprises and uh they had a laundry service um and so uh because uh Chapel Hill sits in between Duke and North Carolina universities and there's a lot of fraternities so they came up with the notion of a laundry service that would go you know bring a big bag to uh or bags you to each of the fraternities and each you know any member it wanted to use their service, put **[00:26:00]** all their stuff in there, they went and cleaned it and they brought it back to them, you know, washed, folded, packaged, hung up, you know, with the plastic over whatever it is, you know, like and and you paid them, right? So, >> um, and they that service scaled up really fast. Um, they did they had a dog walking business. Uh, they had a business uh tending to maintaining cemeteries. That one didn't work out so well cuz that's just very physically intense, especially in um certain times of the year. They had a candle making business, a letter shop, um oh gosh, I can't remember all the businesses there. And so they went to the universities to the business schools and uh went to pending graduates and said, "I have an idea for you. Mhm. >> Um why don't you skip the six figure job that you're going to go to when you graduate from here and come over and run one of our microenterprises for $38,000 a year. Um and and create a business, right, serving these individuals and uh they had a line out the door of people who wanted to do that. And so it's proven to be this really interesting model. Um still a challenge to make enough money to be completely sustainable, but um but it works and it's a great model. Um, so you know, we're going to our goal is to do something similar except find the way to make it financially self- sustaining um like real businesses. And what would be really cool >> if we can do it is that a microenterprise would grow to be so uh successful that it could leave and go set up, you know, some other place in town on its own like **[00:28:00]** a real business would. So we would then become an incubator, right? Yes. >> And so I like this notion of being an incubator of businesses. Um some won't, you know, some will just stay there, but you know, if we can find stuff that, you know, that could outgrow our space, that'd be awesome. >> That's great. And also >> incubators work. Like you said, some programs go out, some don't. That's the way it works. and and there's so much push here in San Antonio close by that yeah I mean at the end of the day if something works there's going to be people that are going to get behind it. >> Well we have a we have a regular business incubator here in Bernie called DOS Greenhouse that is very successful right now. I don't I they're full again. I think I know the woman who runs it um and the people who formed it. Um and it's been a very successful little venture. In fact, I think they're outgrowing their space. Um, so, uh, yeah, you're right. Incubators do work. >> And I really like the concept that they did over in Chapel Hill because it's genius to have it next to the universities because you have a demographic that cycles. So, it's always the same demographic, but they go in and they go out and they go in and they go out. So you can have a very tight niche service that you know helps that demographic that stage of life and build these microenterprises for stages because you know you're always going to have a pipeline of people in that state and then >> well you know you can do the same thing in this area right you know um u UT is **[00:30:00]** not that far away um you know UTSA uh&M San Antonio uh Texas State right there's there's plenty of university talent you know, close enough that we could tap into >> as that's excellent. Talking about the day programs for which there are not enough >> not enough. Yeah. >> Who pays for these? So apart from donations and things like that is if one were to want to create a business like a day program like someone creates a daycare or someone creates a whatever type of business they're in it to make money and help people but make money if if it's a business. So who who actually pays for if you are the parent of someone with ID and you want them to go to a day program. Do you pay out of pocket? Is this insurancebased? Is this donorbased? How does that work in the business side of things? >> Yeah. So, um, so I'll speak to Texas in particular. So, Texas has has a specific system. It'll apply in general to most of the other states. Um, in 2022, Texas got rid of what we called dehabilitation. Um, that's a an act of the legislature. Uh, and they replaced it with something called individualized skills and socialization. Kind of a mouthful, but that's what we got today, right? that that is the day program structure. Um, but it's specific to if you want to use Medicaid waiver funding to pay for your individual to participate in that program, then you have to follow that, right? So, so um the the uh most of the participants in an ISS, individualized skills and socialization program are paying for that with their Medicaid waiver funds. Now, for anybody who doesn't know what a Medicaid waiver is, um very **[00:32:00]** quickly, um uh Medicaid is a source of money for low-income individuals. Uh there was a waiver uh um the whole concept of waiver programs uh originated uh probably four decades ago, five decades ago in recognizing that um if you waved certain requirements about Medicaid, that money could then serve individuals in in ways that were complimentary to just medical, right? And so, uh, waivers, there's a federal baseline for for what you can and can't do, and then each state can customize that to serve a specific need in the state. In Texas, there's seven waiverss, four that really matter. Um, uh, and and they help pay for a variety of things, your ability to live in a residential setting or your participation in an ISS program. And so, uh, my daughters, uh, have the HCS waiver, home and community services. That's the most robust waiver in Texas. and we use that funding to pay for uh their u participation in the ISS program they go to. Now, there are some families who don't have that waiver. Um Texas is the worst in the country when it comes to uh availability of the waiver. Um there are 350,000 people on the wait list to get that funding. And if you go on the hcs list, it's a 20-year wait um to be able to get it. Yeah, I know. I see that you're shocked face. Um, that's pretty much the shocked face of every parent who puts their name on the list. Um, my girls both have uh that waiver and we use it. But for families that don't, they private pay and so so now you don't have to form a day program as an ISS program. I could just go do one on my own, >> **[00:34:00]** but I wouldn't be able to use the waiver funding. The the participants wouldn't be able to use the funding. It would be 100% private pay. >> Insurance doesn't pay for that. Mhm. >> Um uh now, uh whether you're on ISS or you're not, you're probably going to fundra uh to support that because you're probably a nonprofit um to to run that program. Um so, you know, you do you do whatever it is you need to do, right? So, you do gay or 5Ks or golf tournaments or um a friend of mine up in the Dallas area does a thing with a a little rubber duck race, you know. Um there's a you know very creative fundraising things and then you know you go and ask the families for a little help and um uh so yeah just you know whatever you need to do but it's a business you know you still have to run it. It's it's you have to bring in more money than you spend. Um and that's you know nobody's getting nobody's getting rich off this. They're just not the reimbursement rates are terrible. Mhm. >> Um but uh but you still have to run it as a business. >> That that was my next question. So is it similar to when some practices semiattached to the medical/ aesthetic space can decide to do insurance based or cash based, right? and and the refund rates are terrible and some prefer the cash, but then you have to market it like a business instead of getting so so it's similar in that sense that if you want to run it, you can either run it as a business business and expect people to pay for it like they would pay for a **[00:36:00]** daycare or any other program or a private school. um or do it where you can have and use those waiverss but it you then have to follow certain guidelines. Is that >> Yeah. No, you do. And uh you know and and you know I use the term reimbursement. So, you know, typically an operator of a day program is paying individuals and they're submitting their claims to the state to being reimbursed for the money that they paid for the staff that work there based on, you know, who the individuals who showed up and whatever their the rate attached to them is as determined by the state. And uh but it is uh those rates are insufficient um to cover. They they we just they just don't keep up with reality. And you know, the reality is um you know, you can make $18 an hour at at you know, Bill Miller Barbecue after 3 months, you know, as long as you don't you know, as long as you show up when you're supposed to. And $18 an hour is pretty competitive for a lot of individuals, you know, and and um you know, you wouldn't get anybody good to work for you. You know, you're looking at 20 or 21, $22, $25 an hour. Um I guarantee you the reimbursement rates aren't enough to cover that. So, >> you fund raise. You find clever ways to to make that work. You know, the same is true in housing >> for for individuals. you know, reimbursement rate, you know, the the funding that supports individuals to be able to live as independently as possible in in their residential setting is also insufficient. And so, um, you know, we're being very creative in our model for housing. Um, **[00:38:00]** because I know the problem is there, right? And, uh, but it's it's difficult. It's ju it's just difficult. >> I I can imagine. So, how is a housing program focused on adults with ID different than a regular housing program? I'm sure it's hugely different. Again, it comes down to the individual, right? Some individuals work fine in what we call scattered site home or apartment, right? Just a regular apartment complex. they get a regular apartment, you know, they if they don't drive, they know how to take VIA to get to work or they're part of a car poolool or um if they do require and have the funding for supports, you know, through the waiver, for example, to to live in that apartment, somebody comes and helps them, you know, however much they need help, you know, that individual may drive them to a job or or to a program or to to something else. Um uh and so it can it can range from you know individuals with low support needs who are pretty independent to individuals with very high support needs who are completely dependent on you know 24/7 365 care sometimes more than one-on-one right there are some individuals who require twoon-one threeon-one um because their their needs are so significant. So then you end up with specialized housing situations, you know, permanent supportive housing that um uh and there's all types across the state. So um the historically um if you go back before 1999 uh a lot of individuals were housed in institutions, very large buildings, very institutional, you know, rigid uh rigid uh timets, rigid meal times, you know, ri on and on. And uh the Olmstead uh Supreme Court decision in 1999 uh required a uh a deinstitutionalization. There **[00:40:00]** was a mandate to deinstitutionalize and move into home and community based settings um uh as required by the um Americans with Disabilities Act. And so you saw this proliferation of group homes. Um, but if you stair step it down from institutions which tend to be larger and more medically or behaviorally focused, then your next level down in very general terms is what's called an intermediate care facility or an ICF. >> Um, which is a smaller setting. Um, that still may be medically or behaviorally focused. Uh, it tends they tend to be um setting they tend to provide their own staffing um for that particular setting. And then if you step it down further than that, then you sort of get to group homes, uh that might be three or four unrelated adults with a house manager. Um there's more independents. Um things like that. And then you can actually sort of the the the next one below that might be something called a host home >> where instead of my daughters living with with my wife and me, they go to live with another family and that family gets paid to support them. or the individuals might go live in their again their own scattered site home or apartment. Right? So there's sort of all these levels. Um Texas has more institutions I believe than any other state in the country. Um they call them state supported living centers. Uh there's 13 of them in the state. >> Um they have more ICFs or immediate care facilities than I believe any other state in the country. They have 750 around the state. That was a number that kind of blew me away when I learned it. um they've got more than 3,000 group homes. Um **[00:42:00]** but the problem is the reimbursement rate to pay for the support staff to support individuals to live in group homes is $13 an hour >> and you can't you can't you can't run a business like that. So in the last year 250 of those group homes have closed uh because they can't continue to operate at that. We we lobbyed the legislature for more money. Um, what's what's emerged from all this is parents who just go, none of these things are good enough. >> It's exactly the same place I came from, >> and I know a better way. I I have a better idea in my head for what would be um what my son or daughter would want. Um either because they're telling me or because I know them well enough. So, you know, my daughters are fairly impacted. um they wouldn't be able to tell me exactly what they want, but you know, I spent enough time divining that from them and I go, I think this is a setting in which you would thrive but also be safe, right? And so there's been this proliferation of really amazing thinking across the country in developing what we call intentional communities. Okay. >> Um and intentional communities are purposefully built to support individuals with ID. um they take all forms, right? Um now, interestingly, I had this idea for what I wanted for my daughter and that's that was really the genesis of LTO Ventures. Um, and then I developed I kind of scratched out a model for it and then um, I kind of grew into the space and I thought I got kind of smart on it and then I went and started visiting a bunch of places around the country because there's **[00:44:00]** anything from farmsteads to uh, you know, multi-story apartment buildings to campus communities to, you know, pretty much everything. Um, and so there's there's more than 300 intentional communities operating around the country right now. There's more than 50 in development at any time. And we built a business at LTO Ventures in helping nonprofits build their intentional communities, right? And you know, and so it's it's climbing into the brains of the board and the founders and going what what is your vision? Like help me to actually see the vision. Um and then we help them make it happen because it's a lot of work. It's a lot of work to make it happen. Um but some really creative stuff, right? So right now we're working on besides our own community which I consider to be pretty innovative. Um um for example just one of the things that we do is we're the leading developer of home ownership opportunities for adults with ID in the country. >> And so I'm a big believer in individuals owning their own home. um for families to say buy the home, pay it down, deed it into their son or daughter's special need trust so that they have a financial asset, you know, for when the to draw down on if they need to when the parents aren't around anymore, >> right? >> But it also gives you some long-term control. So, I mean, we're we have our own model and it's all on our website. Um we're working on a project in Houston that's going to be a four-story apartment building um on a school campus. um uh very uh oriented toward um we'll call it programming right now very much thinking about how you grow continue to grow the individuals **[00:46:00]** their their school they've they've you know these kids have come through their school and now this is the next step after right you age out >> um but they want them to continue to learn and to grow um I always think it would be great you know if you're if you know somebody if an individual gets into that kind of environment grows enough that they go, I don't want to be here anymore. I want to go to a scattered say home or apartment or I want to go get married or I want to go live, you know, with my friend over here. I think that's a very cool outcome. Um, a lot of parents are terrified of that idea, but that's all right. >> Um, we're working on um Jewish inspired projects in Wisconsin. >> Um, because there uh particularly for, you know, Orthodox and Jewish families, there are some very specific requirements for that. And so there's all kinds of of different uh projects and there's Texas has a lot of them right now. They've got a lot of these communities already operating. more to the more affected or less affected. like is one community focused more on one side of the spectrum or the other or are they sort of generalized to fit a big part of the spectrum? >> Each one is different. Each one is different. Um so u Brookwood community outside of Houston. Um I know I've been there multiple times. I've met a lot of the residents who are there. A lot of them are significantly impacted and they need a more supportive uh higher support ratio um kind of environment. um Daymark Living outside south of Dallas and Wahhatchee are individuals who um are far more independent um **[00:48:00]** require much less support. Um uh my friend uh 29 Acres outside of Dallas, uh my friend Deb Cotti developed that. She has individuals, so she's got 10 homes on 29 acres. Um and she serves uh or supports individuals uh with a very wide range of disabilities from very you know very significantly impacted to pretty independent. Um and so you know each project is different. Uh it's kind of whatever you want to do. You know we want in our project which we call Autumn Hills Village. We want to support individuals across a range of disabilities. Um because a lot of the intentional communities tend to focus on individuals with lower support needs because they're they're just easier. >> Um um and you can make the you can make the numbers work a little bit easier. >> Mhm. >> Um um but you know, my girls are pretty impacted. A lot of their friends are pretty impacted. They're they need a place, right? They need a place that's that is designed with them in mind, >> but is meant to be a place where they can grow and and live, you know, the Is there a parallel to adult daycare and assisted living centers for which there is a very large market cap but mostly privately paid? Yeah. And it's funny that assisted living always comes up. Um the the thing about assisted living is uh depending on how you want to develop your intentional community, they may look similar, right? operation, but the the finances are completely reversed, right? So, assisted living tends to be occupied by individuals who are seniors who've accumulated assets and wealth over their life. And so, then and then there's a pay structure, you know, there's a fee structure that goes **[00:50:00]** with that. I won't get into all the different kinds of fee structures, but that's, you know, you got money when you get in there. >> Individuals with disabilities tend to be in their 20s or 30s. They haven't accumulated wealth. They in fact you're disincentivized from accumulating wealth because you lose your benefits, right? So um that's why special needs trusts and ABLE accounts and things like that were developed, right? To be able to park money for individuals but would not impact um you know their Medicaid or their or their SSI. >> Um so the financial models are completely different. >> Um the service and support models might be similar um or they might be very different. Um, but every I always get the question about assisted living when we're developing a new project someplace cuz I get it. It's easy to walk down the street and maybe they're, you know, somebody's parents are already there. My my father was in a memory care facility in assisted living. My grandmother was in a magnificent independent assisted living um place in Maryland. Um, you know, uh, where she lived a very robust life um, until she required hospice. film. Um, and so, so it's kind of a yes and a no, I guess. >> But that's similar, but they're not. >> Yeah. Yeah. Because I think we all sort of jump to that conclusion and say, wait, why is this a business and this other one sort of needs more of a nonprofit type approach, but it makes complete sense what you just said because it's the age group and how those assets were were created. And I think also to your point earlier trying to incentivize people to learn skills and grow and and grow in as **[00:52:00]** a person but in a way and of course it requires loving and everything that is not disincentivized by the state so that they can actually grow and not be lose part of the ren which is what happens with healthcare and all that right so you you get support but then you make money and you lose the support and now you can't afford getting >> I know it's all it's always about money. Yeah, it's always about money. >> So, what can people do to help if someone's listening to something like this and they're like, "Wow, this sounds interesting. I I have some assets, some time, some money, some whatever, and I I want to support these types of projects. Where does one go to learn about projects like um Autumn Hills Village or even the concept of investing in someone else's project to get it built? How does that work? >> Yeah. Well, obviously I'm going to tell people to come to see us because I'd like to believe we're a national expert in this space. We have a model for for something we want to do. But, you know, if you go to my blog, um you'll we do we do posts about um different states and all the projects that are in those states. I might look at a particular project just individually at at some point or I might look at a a funding model in a particular way or a piece of legislation to trigger that. So, there's all kinds of things you can learn um from that. Um you know, as far as uh everybody's time, talent, and treasure, um we love volunteers. Every project, every place I know needs volunteers. Um, it's the greatest way you can help. Um, you **[00:54:00]** know, uh, if you've got access to resources, um, that can help, particularly new projects, um, that's always beneficial. And then, uh, there isn't a project I know that doesn't need money. And so, you know, donating is and, you know, figure out kind of what you want to donate to. I want to donate more toward a day program or toward housing or toward, you know, something else. Um, every single operator of an intentional community that I know will be more than happy to sit and explain to you how it works, what they need, understand sort of what your personal interest might be, um, and and try to find some common ground uh, for that. Um, you know, at the end of the day, we're all just trying to support these eight and a half million individuals with ID around the country, and all of us can't build fast enough. Um, so yeah, any help we can get. The numbers are staggering. This has been truly insightful, Mark. I didn't know a lot of the things that we talked about today and and it'll get my head thinking of new ways that people can grow and need support. I hope this helps other people that are listening also learn about what what's going on uh with these communities that they exist and that there are so many of them but at the same time there are so few of them and that we need a lot more. So Mark, where can people find you if they want to reach out? >> Well, the easiest way is just our website, lto ventures.org.org. Um, everything is there. I put everything on there. Um, you know, you can sign up for our newsletter. Um, I try to get one out **[00:56:00]** about once a month. I would love to tell you I'm perfect at that. I'm not. Um, uh, you can follow us on Facebook, LTO Ventures. You can find LTO Ventures on Facebook. Um, I should put more there, but you know, we're we're busy building stuff right now. So, but that's a great place to go. And if somebody really wants to have a conversation about anything, um, contact information is there. That's my number at the bottom. So, um, it rings the phone right over here. Uh, I, you know, I love having those conversations. I I talk to I talk to families all the time. I talk to people who want to create projects all the time. And, um, I love to hear their stories. Amazing. Thank you so much for coming on, Mark. I hope we speak again soon. And for everyone who's listening, just visit lto ventures.org. I'll link it in the show notes. Thank you so much. >> Thank you so much for having me. >> Pleasure.