[00:00:01] Speaker A: Welcome to Shining Inspiring Voices of Autism with show host Jennifer Dantzler. My name is Matthew and I'm on the autism spectrum. Thank you for taking the time to learn more about the world of autism. If you enjoy what you hear today, don't forget to follow this podcast. Hey, everyone, this is Jennifer Dantzler, and I'm the executive director and founder of inspirend, a nonprofit whose mission is to create truly inclusive communities through education and engagement. The goal of this podcast is to shine a light on real people and their stories in hopes of inspiring others who are on this journey of autism. Either themselves, their child, their loved one, their co worker. I truly believe ignorance is not bliss, and we cannot be inclusive communities if we do not understand the people in the community.
With autism now affecting 1 in 31 people, we need to get louder about this topic. We recognize that autism is a spectrum. There are a lot of people with a lot of different needs, a lot of resources available or none available. And we know that in every episode, we can't meet everyone's needs for their specific interest.
However, we hope that in each episode you do glue gleam some kind of insight as to how you can help your child or yourself be a better advocate. And as we go through our podcast, our goal really is to address the entire spectrum, the various needs, the various environments that we're going to be in. And we hope that there's something in every episode for each one of you. So let's get started.
Okay, everyone, we are here today with a very special guest.
Some of you are here local in Houston, certainly know of this person. I'm here with Dr. Amy Wood here. Amy and I were talking and we think we've known each other for about 15 years in various contexts, professionally and colleagues and as friends.
So as far as some of Amy's accolades, she is the president of Feet for Families for Effective Autism Treatment, and she's the vice president of Project Beacon here locally in the Woodlands, Texas. And we're going to talk more about those organizations during this podcast. But she's also a member of the public policy group for Texaba, and she's on the behavior analyst licensure board for the state of Texas. And again, these are just a few of the things that Amy does during her day and during her week while also having two children on the autism spectrum. Today we're here going to mainly talk about one, our friend James, our beloved James.
And so, Amy, thank you so much for being here today.
[00:02:22] Speaker B: It's my pleasure, Jennifer. Thank you so much for inviting me.
[00:02:26] Speaker A: Okay. So let's talk a little bit about. Start with your journey with autism. How old was James when he was diagnosed?
How old is he now? Where is he living? What's he doing?
[00:02:36] Speaker B: So James was diagnosed at 22 months and 20 years ago. That was a very, very early diagnosis. Most of the time we weren't catching people quite that early. My husband and I have a strong medical background and I think that gave us a bit of an advantage in terms of recognizing some of the signs and symptoms and having James evaluated. He's now 22 years old. He just recently graduated from the public school system and just three weeks ago made the transition to his adult services. His program that he's going to be attending that has a whole host of things that are very purposeful and meaningful for him throughout that whole 22 year process.
From the age of two years old, he got early intervention with applied Behavior analysis and he's had the benefit of working with some of the very best people in the field, including you, Jennifer, over the years. And he's been able to have very meaningful advances in ways that have changed his life dramatically.
[00:03:48] Speaker A: So talk a little bit about James's strengths and some of his challenges, like where would you consider him on the spectrum and what are some of his day to day things?
[00:03:56] Speaker B: So James is in the profound category of autism. He is on the more severe end. We would say he does have some vocal communication, but he's not conversational. But he definitely has mechanisms to functionally communicate. Despite being in such a challenging category, James has been able to acquire a huge array of skills that give him independence every day, that help him contribute to his family life every day, that have helped him discover things that he loves and he enjoys to do. In addition to all of the, if you will, academic type skills, we've really focused on helping James be the best version of himself, which is as independent as possible, but surrounded by people that love him, cherish him and understand how to support him.
[00:04:58] Speaker A: So as you mentioned, he's now 22. So back when you were doing early intervention about 20 years ago, it looked a little different than it does now. It was home based programming. Right. And as parents, you were very involved.
And so when, if trying to reflect back on those days, what do you think? If you have a parent of a newly diagnosed child sitting here, what's your advice for them on starting aba? Where do they put their priorities? Like what's the best thing they can do to get the value out of early intervention?
[00:05:30] Speaker B: I think really the most critical thing for parents is to understand that they do need to be part of the process and learn how to support and teach their own child. When I started, it was a home based program, which was actually advantageous at the time because I was as much part of that team as the therapists who were teaching him. I learned right alongside them and I had VCBAs that role played with me and watched me and gave me feedback, which was incredibly pivotal for James.
So today, most of the delivery of ABA is in a clinic type of environment.
I would highly encourage parents to be as much part of trainings in those environments and ask for services in your home to help get those skills that they're acquiring to be useful and applied in their natural environment, because that's what we're after. And that does take some intentionality on the part of the parent and. And it does take some commitment. I kind of think of it like if you have a child who's deaf, if you want to be able to communicate with them, you have to learn sign language. This is very similar. If you want to be able to interface with your child as effectively as possible and give them the best chance for good outcomes, you have to be part of the applied behavior analysis equation. It's as much of a parent program as it is a child program.
[00:07:06] Speaker A: Very well said. Very well said. You know, I often say to parents, the other examples I try to give, especially when you come to things like toilet training, is why haven't. Why hasn't my child been toilet trained yet? But if you were trying to lose weight and were only dieting six hours a day, or if you were trying to stop smoking and you weren't smoking for six hours a day, have you really lost weight or have you really quit smoking? So why are we asking maybe a nonverbal or emerging verbal child to learn how to speak when only working on it six hours a day? Or how to toilet train when only working on it six hours a day. And you know, I think, Amy, back when you did it, there was also no insurance coverage, so it was private pay. And I often say in some ways that might have been better because you also knew the clock was ticking, your checkbook was depleting fast, so you had to get as many skills acquired for you to be able to carry on. And now with insurance covers, it's obviously wonderful that more people can get coverage and access, But I don't know that as many parents take it as seriously today as they did then because it's covered by insurance and so they don't have to be as Invested. Right. And I think I can tell you firsthand from knowing Amy, from knowing James, from being have been in their home and seeing their in home program that she still does herself, that she implements every single day, right. As far as structure and activities and schedules. That investment that Amy just talked about is so vitally important because the child needs you to know and understand and understand behavioral principles and understand what works and doesn't work and know how to shape behavior and shape skills and reinforce the right skills and all those things. So if you are doing some kind of home program, I can't tell you enough. I suggest that you take Amy out for a very expensive six course dinner because then it'll last longer and bend her ear for all the things that she's doing in her home because as she said, her son is level three, profound, severe, whatever you want to categorize it. But James is extremely independent in the home. He's extremely structured. It's a family event, right? They all know it, they all do it. And it's not just mom or dad or sister taking it on. They all have embraced the concepts and James is absolutely better off for it. So thank you on behalf of the world of aba because you make us look good and you prove what the research shows, right? What the data shows as far as the effectiveness as you reflect on his educational journey. Since that just sort of wrapped up officially, what is something that you're glad that you did or fought for in.
[00:09:37] Speaker B: The context of James's educational journey? I think it was really pivotal in the beginning to, number one, know James very well myself and understand exactly what he can do and what he can't do. That gave me a whole lot of leverage when we were talking with the education staff about his IEP and where was he going to be placed and what classroom was he going to be? So that's number one. And then I think the second thing was requesting that the BCBA within the district be part of James's team and decision making and development of objectives and that willingness of that individual to collaborate with James's home aba. That set up a situation where we were all working together, we were all working as a team. And I think that it immediately took some of the potential adversity away, if you will. A lot of times the relationship between the school districts and the parents is very challenged. But my goal going in there was for them to be successful with him and for them to recognize that I will do whatever's necessary on my end to support them as well. And I was very Fortunate in that the district recognized that I was somebody that was going to be part of the team. I think they don't see that very often. And it was so critical for setting the stage of what ended up being overall a very positive public school experience.
[00:11:15] Speaker A: And that's wonderful. And what I hear you saying is it really is about being present, being an advocate, sometimes having to be the squeaky wheel. Right. Knowing your stuff. But also, were there times that you maybe didn't know the exact right answer, but your gut said something here isn't right? Did that ever happen? And if so, like, what did you do with that?
[00:11:35] Speaker B: That certainly happened. I mean, it was such an ongoing process every single year.
And you have different teachers oftentimes every single year and different pair of professionals. So, you know, you sort of feel like you're in an educational mode about your child on an ongoing basis. And so you have to sort of recognize that, you know, do you have to give up your career and just drop everything and just do that? No, but you certainly have to be part of the process. And if they recommended something for him that just did not feel like it was going to be the best situation for him, I always ask them for more discussion about it. Other parents were always surprised. You know, it's like, how long was your ARD meeting? Well, it wasn't very long because I will have met with them multiple times before we ever get to that component, and we will have worked out things together. I also think a lot of parents don't recognize they can get a draft of the ardocument prior to the meeting. I requested that every single time, and they eventually learned that they might want to get that draft to me about a week in advance because I was going to have a lot of feedback.
There was much respect on both sides, but I always held them accountable.
[00:12:55] Speaker A: What's something you wish you had done.
[00:12:57] Speaker B: Differently as far as the educational journey is concerned? There is definitely an area which impacted James quite negatively, and that was communication between school to school.
When that transition happens, between elementary school and middle school, and then middle school to junior high and then junior high to high school. Throughout the entire process, you think you've got everything in place. And then you realize that the staff where he's been for four years, never communicated anything about his needs to the new staff, and I was slow to pick up on that.
And the two times that James really did have some challenges when he made that transition, it was largely because that communication did not take place between the professionals in the education environment.
So I Think I would have been much more proactive about making sure that that educational process took place and requesting feedback from it. So it's very hard for a brand new teacher to come into a situation with paraprofessionals. And, and they have a couple of pages written about that person, but nobody said, you know what, this really works for him. Let me tell you how best to make him successful. A 30 minute conversation sometimes does a world of good for that individual that's making that transition to a new environment.
[00:14:23] Speaker A: Well, I think that's a wonderful tip because not even only just the teacher, but to your point, the administration of a new school, and I don't know that they, especially in the world of special needs, automatically assume that the parent is on the same team. And so even just that transition of knowledge, like you're gonna want to use the parents right where you can, they're gonna help you get unstuck. If you're not sure what to do, ask the parents, because they are part of the team. And so even that sharing of that knowledge from the elementary to the middle is saying, hey, call Amy. Like, she'll help you. She's not gonna attack you. She's gonna help you.
[00:14:55] Speaker B: Absolutely.
[00:14:55] Speaker A: That's so important. So for you parents out there who are listening, who are about to transition with, whether it's from elementary to middle or one school just to a different elementary school, whatever it is, don't assume right that knowledge is being transferred to the extent that you want and need it transferred.
[00:15:13] Speaker B: Yeah, right, Absolutely.
[00:15:14] Speaker A: Okay, wonderful. Let's talk a little bit about your in home program. And what did that look like for early intervention and what does that look like now?
[00:15:23] Speaker B: So we started a big effort to generalize James's skills to his natural family life rhythm. And that is also something that has to be an intentional teaching process. It took me a few years to really realize that even though he was in the home, upstairs in his little therapy room, and they're working with him one to one and they're doing natural environmental teaching, we still had to teach it within the natural sense of, of everything that goes on for the family.
So I think it was a watershed moment for us about the time that he was 5 or 6 years old and I went to my BCBA and I said, you know, I want to really pivot towards things that are going to make him successful with the family and to preserve our quality of life. His parents and his sister. He has a sister who is 18 months older than him, and we were always as focused on her quality of life as James's. So we started teaching him an activity book. And it started off not being something that lasted for four hours a day. I have video footage of us teaching him for the very first time. You know, his first little activity book may have taken five minutes, but what that set in motion was the ability to apply those skills to almost every routine that he has. So that's how he's learned to be independent as far as getting himself ready to go to school every day. He does all that completely on an independent basis.
Um, it's helped him to integrate into the family life. You know, we all do chores every night in our family and kind of get the house ready for the next day. He's part of that process.
And it has also helped him to, as I said, he has a lot of skills for being in the category he's in.
A lot of the pre vocational and vocational skills that he has today are based upon that, what it looks like in the house today. I've got a 22 year old young man who sometimes does the equivalent of an activity schedule for four hours a day, very independently. And he makes his schedule, he makes those choices. Now I think that's what we want for all of our children to have balance in their life, to be able to access things that are their favorite things to do, but also continue to learn things they need to learn and to set them up for success as an adult. It is so important for parents to understand that your autistic child will be an autistic adult and that will be three quarters of their life. So maximizing their independent skills is crucial for where they're going to end up going forward.
[00:18:14] Speaker A: And for listeners out there, if you haven't read yet, make it Meaningful by Peter Gerhardt, he's basically been able to put into a book and summarize what we've learned over the last 20 to 30 years about those skills. And especially now with the world of insurance sometimes dictating what goals look like, the way he frames all that in how do we make them insurance acceptable but meaningful. Right. That affect corporate quality of life is very important. And I think it's also very important what you said, you know, there's some people out there right now, there's the other side of the voice that says aba is too structured, it's cruel, it's all those negative things. But there are people in the world, some of us, not even on the spectrum, that need structure, that need guidance, that need that support.
And I know a cute little story. When I was visiting recently, he does follow his schedule and he does make his own choices and he'll. Then he'll do cute little things like it's snack time. So he, he goes to get his goldfish and he. The parents have worked on having to limit him to only one cup because if not, as all of us will eat the whole bag. But what he does is he gets one cup, but one. The most potential heaping cup of goldfish you can get that he. That won't spill. But. So he's not just following a rule. He still has his autonomy and it is still his personality. But you had to set some boundaries because if not, his health was maybe gonna be at jeopardy. And I just think for parents out there who have people on the more profound end, you understand what's going on and you understand that need for structure. And I think some people who don't need that structure don't necessarily understand that and feel that it's too rigid. But again, as Amy said, James is thriving in ways that I'm sure doctors, when he was 22 months old didn't think he'd be doing.
[00:19:58] Speaker B: Absolutely. It's actually just the antithesis, rigid, highly structured scenario. It's an infrastructure around him that helps him make good decisions for himself every day. And that's opened up a world of opportunity that would not be there for him. And I do think that individuals that may have a different profile on the spectrum may not understand that someone like James, who is in that profound category, they have to learn that way, otherwise they're not going to acquire skills. Sometimes that is the only way that we're going to be able to teach them how to do things that ultimately are going to bring them joy. And so if anything, it makes him more independent and have more autonomy in terms of choosing things that he enjoys doing along with things that all of us have to do every day.
[00:20:56] Speaker A: So I'm going to repeat that, that if anything, it helps give him more autonomy, choice and freedom to be able to access the things that are important to him. And I think that's the part that is not always understood. As long as it's also a good ABA program. Right. Just like every industry, we can talk about neurologists, there may be some not great neurologists out there. Doesn't mean neurology should go away as a field. Same thing with aba. I know we talk about on different podcasts. We're have one specific podcast about how do parents look for good ABA and what's. What is important to be in a good ABA program. But for people who maybe talk negatively, they then don't know what good or appropriate ABA is.
[00:21:37] Speaker B: Absolutely. I think that there are. There's still a lot of myths around aba. My daughter, who has watched James his entire life, she told me recently, she goes, I'm so thankful that he had the chance to get ABA because his life would look so different. And I know recently, in the last couple years, I've gone to the Profound Autism Summit, which is, if you have a child that's profoundly affected, I highly encourage you to go to. But you see individuals that have way more challenges than him, and we're very thankful that he had the opportunity to get this. It has become part of our life in the house.
But I think there's another paradox there. You know, some people may say, well, Amy's just completely dedicated everything to putting this together. No, it's actually just the opposite. By investing time in it, I have the ability to be autonomous myself and support organizations that are doing great things for individuals with autism and be part of the advocacy platform. He and I, you know, we work alongside each other every day. And he's just so independent and enjoys making his choices that it gives me freedom and independence, which is true for our entire family. It has been a huge benefit to our overall quality of life as a family. And I would encourage new parents. You know, talk to your BCBA and give them the top three or five things that you really would love for your child to be able to do with their family members. And I did that. And I said, you know, I really want him to be able to watch TV with his sister and watch a TV show from start to finish. And you wouldn't think that you have to teach someone like that, but people with autism, even higher functioning individuals than James, sometimes we have to intentionally help them be successful doing those things. Well, now, watching movies together is one of the biggest things that we love to do together as a family. And we watch one almost every weekend. And he loves going out to the movie theaters to see that that is meaningful and it's true quality of life. So think about what those things are. Talk to your bcba and they can help you put together a plan to help your child acquire the skills they need to acquire to be part of your family unit. And that is truly integration.
[00:24:11] Speaker A: That is the premise of what ABA is about, right? It's about integration, inclusion, access to community, access to quality of life. And for those of you who might be in early intervention or ABA under through insurance, there is parent training coverage as you said there is in home coverage, if you're in a program where they're not doing that and supporting you as parents for the goals that you want as a family, then you might need to look at revising that or advocating a little bit more in that area. Okay, so now let's shift a little bit to. We keep talking about the word profound autism. And I know this is a little bit of a newer initiative. So as you mentioned, there's the Profound Autism alliance that Judith or city started, based up in Boston and that's where the conference is each year. But let's talk a little bit about that diagnosis from your experience and knowledge. Why are we moving towards this diagnosis?
[00:25:00] Speaker B: I think it's really critical for this group of individuals on the spectrum. And about a third of people with autism fall into this category of being more significantly affected by their autism. And it often comes with things like intellectual disability and some other coexisting situations that go along with having profound autism. I think having a language and a term that we can differentiate this group of people from, from other people on the spectrum is crucial. It's crucial for their quality of life. They oftentimes are not represented well. When policy decisions are made, when resource allocations take place, when scientific studies are done, that one third of the spectrum, the profound entity completely gets left out of those discussions. Living with an individual who is profoundly affected with autism is significant. It's a very hard road for their family members sometimes these individuals have real challenging problem behaviors, self injurious behaviors, property destruction. And those families live in a survival mode. They need different supports, they need more enhanced resources. And we need to be able to have a name for that and differentiate this group of people to the individuals that make decisions in that regard. It's a very tough road sometimes for these families. It's been even eye opening for me to go to the summit and see how challenging some of these individuals that are affected profoundly. I certainly appreciate the fact that there are many gifts that come with autism. Everybody has their unique strengths and their unique challenges. But when you have somebody who is profoundly affected, who suffers from self injurious behavior, when where they bang their head 250 times a day, that's not a gift. It is something that is a huge challenge. We need better treatment for and we need focus on how to help that person and the people who care for them well.
[00:27:08] Speaker A: And I think part of the challenge is as you've talked about, tough things happen, bad things happen, and I think then it gets hard for the parents to feel comfortable enough to share about the reality of what their child might be engaging in or even how they have to address it. I think part of the challenge is with this label, I think more parents are then going to feel more comfortable coming forward. If now this is more where there's more education around it than a parent can come forward and say, yes, I need supports for in home modifications because I do have to have a padded room in my home. Parents are scared to be that voice and go on the news and talk about their child who head bangs 200 times a day day. Or who feces smears or who they have to have locks all over the inside of their house because their child will run out. And I think part of what I'm excited for with this diagnosis is that hopefully then more of those parents will feel comfortable speaking up. Because I think so many of you all are afraid. Are they going to call cps? Are they going to call adult protective services when they learn sometimes just what survival requires?
[00:28:15] Speaker B: I think that's so true, Jennifer. I think that we do need to uncover those challenges and feel that level of comfort so that we can access help, the help that we need. I really am thankful that there are a couple of organizations focusing on this more severe end of the spectrum. I think it's crucial. There's nothing like finding another parent where you can share your walk in life who's walking the same line. And a lot of times we get very separated, very isolated and we suffer in silence, honestly. And our children suffer in silence. So we need to talk about it. Just like you may have somebody with severe diabetes and someone who has less severe diabetes, there's different needs involved there. This is no different. And we need to be supportive of families that have an individual like this.
[00:29:06] Speaker A: And I think the other thing when it comes to things like funding sources is it's also going to be lifelong intensive needs. And this is the reality, right? Insurance lives in sort of what I call these six month hells for parents where it's reauths every six months. But these aren't going to be our people that need six months of therapy or in the world of cancer, four rounds of chemo, right? These are going to be people who need lifelong care and the funding needs to match that care or all. You know, this is sometimes what I don't understand is like even in the world of medical insurance, they invest all this money like an early intervention, but then they sort of create these magic caps for when the child is done or has reached their Maximum potential, whatever that means in the world of insurance. But then all the money they did invest is almost wasted if there's no carryover or consistency or continuity of care, titration of services if not done correctly. And so we know it's costing the insurance world a lot of money. It's one in 31 children right now. There has to be some more continuity of care longer term for these individuals or all of the money, time and efforts, like everything you've said you've done would then be a waste. Right. And I know I've had a lot of parents that I've talked to over the years who've been been fortunate enough to be able to figure out a way to provide those services if they didn't have medical insurance or other funding sources. But there are a lot of families who can't. Right. Once insurance stops and then it gets a lot harder to maintain the success of those clients.
[00:30:35] Speaker B: Kind of the definition of profound autism is that you're talking about an individual that's going to need 24 hour supervision and care seven days a week for the rest of their natural born life. And to think that they don't need access to the professionals that do have expertise in behavior analysis, in ways to help support their decision making and help them be successful vocationally or in the community, that's like saying, I know you've got diabetes, but it didn't go away by the age of 22 and you can't see your endocrinologist anymore. It makes no sense for somebody like James. He's going to need access to behavior analysis and that expertise for the rest of his life. And that's going to be a huge challenge for me and other parents that ultimately are gonna have to fight for access to that level of support.
[00:31:30] Speaker A: It's so vital that we talk about this. And if you are a parent of maybe someone in their 20s or 30s and maybe didn't get access to these services and you think, oh, it's too late, it's not too late, it's not too late. Applied behavior analysis is the science of human behavior. It's not the science of human behavior for three year olds. It's the science of human behavior. And so however old your child is, wherever they are in life, they can still get supports that can help build new skills, that, so that can help for them to again build autonomy, build quality of life, build access to their community. Right. So it might be a little bit more difficult, but it's as far as accessing it from a funding source it's worth the effort. Right? Okay, so now let's go a little bit into your role with Project Beacon, because as we're talking about this transition into adulthood at 22, it's often called the cliff. Right. Because access to services essentially. Stop.
Let's take a minute first to talk about Medicaid waiver. And in the state of Texas, you get access to Medicaid waiver once the child turns 18.
If you have a diagnosis of autism, however, there is a long wait list. I know James just came up on the list. At what age? And he's 22. At what age did you get him on the list?
[00:32:44] Speaker B: So I was super lucky. I had an occupational therapist who I will forever be grateful to who told me to put him on those lists when he was about three or four years old. He was waited on the list for about 18 years. And we have lists that are 18, 20, 25 year wait lists. This is one area where Texas does not do a good job. We are 49th out of 50 when it comes for funding streams for Texans and adults with disabilities.
We really are in somewhat of neglectful territory there. As I learned, as James grew, I started to realize just how bleak that funding platform is for adults and how everything just sort of disappears and goes away. I've known for a while that I was going to need to be part of a solution to develop a model that really transforms people's expectations for how someone with autism can live and be successful. And I was waiting for the right group of people that I thought had the chance to be successful. And that's when I met the co founders of Project Beacon. Of course, you know, it's a group of parents that are this first generation of families who got early intervention for their child. We can't just let it drop from there and let all their skills dissipate, disappear, and their quality of life with it. So we have higher expectations. We're essentially doing what families did in Houston 25, 30 years ago with early intervention. At Project Beacon, we're trying to do that with adults. We're trying to redefine what a quality of life can be for somebody with autism. In addition to the parent component, we have a terrific board of directors that brings in people with all levels of expertise. The board is truly made up of individuals that are the very best at what they do, whether it's real estate, finance, et cetera, legal expertise. I think that we're going to need every single one of those talents to push forward this adult model that we are designing that is really designed to provide high quality adult services for a variety, as many profiles on the autism spectrum as we can possibly provide.
[00:35:03] Speaker A: So let's talk a little bit about what services Project Beacon is offering now and what is their goal in the next few years.
[00:35:09] Speaker B: So we are now offering full time and part time adult services. Basically it allows that individual to go to a program every day where they're doing really meaningful things and they're out in the community community and they're working on vocational skills.
High quality programs that surround these individuals with expertise honestly don't exist. And so we have developed that for adults. We are also providing services for college bound individuals on the spectrum with collaboration with Lone Star College up in Montgomery County. You know, that group of individuals also need support, but it needs to be done in a way that matches their intellectual capability.
So we're providing those services. We're also providing social enrichment events on a monthly basis for adults. Adults with autism and other neurodiversities, oftentimes as an adult become very isolated and very lonely and there's not many social opportunities for them. As we go forward, we're going to continue to add vocational training and programs in collaboration with Texas Wood Workforce. We also plan and envision having a transition academy, a two year program that's for an individual who has the potential to live 100% independently on their own, but they just need a longer Runway and some extra supports and training to be able to get there. And then finally, the culmination of our vision will be an intentional community within the community that has expertise and structure to support individuals with autism as they live, work, learn and play, just like all of us want in our community.
[00:36:55] Speaker A: Right. So that intentional community, you mean a residential living facility? You know, I think for Project Beacon. The things that are differentiators for Project Beacon are its meaningful inclusion in the community. And the goal is for the entire spectrum. But it's with the basis of ABA. I know there are BCBAs on staff that are creating, implementing, designing programs to again help the young adults be more successful, still grow in their skills at age 20, 25, 30, 35, 40 and beyond. Because there's not going to be an age cap at Project Beacon for any of the programs. Correct?
[00:37:28] Speaker B: That is correct. And you're right, the staffing model throughout all of the programs I just described have BCBAs and RBTs as part of the implementation of supporting individuals as they move forward throughout their life. And I think even though we're saying that it's an intentional inclusive community within the community, some People may have the perception that that isolates them from the community. And again, it's exactly opposite of that. What that allows is the expertise and supports they need to be out in the community at jobs, to be out in the community community going to Market street and watching a movie and eating lunch with their friends. A traditional Medicaid group home model oftentimes will have group homes that are completely isolated from other individuals with neurodiversity. The staff in these places turn over about 80, 90% of the time and they're paid very poorly. What do you think the chances are that that person that lives there is going to get out in the community? I can tell you it's next to zero.
So the reason that we are moving towards this intentional approach, it actually does the opposite of what you might think. And that is it gets the person more inclusion than less. That's what we're after.
[00:38:44] Speaker A: So as we wrap up part one of the series, because we have a lot more to talk about with Amy. If people want to get involved with Project Beacon either to access for their person on the spectrum, their young adult on the spectrum, or to help support it financially because we could have a whole podcast on again, the financial structure, funding in the state of Texas and Project Beacon has to substantially raise money in order to provide these quality services. Because our state funding does not support the level of care and oversight that Project Beacon is giving. How can people access Project Beacon?
[00:39:17] Speaker B: Project Beacon Texas? Go to our website number one, projectbeacontx.org you'll see the full service array that works providing for adults if you have an adult. We are enrolling people right now in full and part time services and are offering coaching, individualized and cohort coaching for different individuals across the spectrum as well as is some of the classes and class series. So we've got a huge service array. We are open. We're ready to integrate individuals into these programs. What you said about what we have to do at Project Beacon, it could not be underscored more. We're talking about transforming the adult model. That is a really big deal. And being part of Project Beacon and supporting it, whether it's volunteering or whether it's financialing, that makes you a part of something that really is going to transform what autism can look like. As an adult, all of us that are involved with it, you know, it's a huge personal sacrifice for us and our families. But we're determined to move this forward so that ultimately it will be the model for Texas, not just in one place or one location. But we definitely need lots of volunteers. We need as much financial support as we can to move this forward. If you think about it in terms of what we did for early intervention, you know that initially started with only five families in the Houston area. And today there are clinics for early intervention all over the Houston area. Dozens, dozens of them. What we want our adult model to be is exactly that. It will be the model for adults. So join us because you're going to be part of something really significant.
[00:41:04] Speaker A: You can also open doors, right? Meaning you can employ, you can be a vocational training job site where you don't have to pay them and they come with their staff to get access to learn skills to be ready for employment. You, you can allow us in to play video games and virtual reality. Any business out there, there's a way you can be a part. I promise you. You just have to ask and say, I want to be a part. Right? As you said, whether it's time, talent or treasure, I know Project Beacon can use that help. So. All right, we're going to wrap up part one of this series right now with Dr. Amy Wood because I think we've already covered a lot of ground and I know for a lot of us, if we take in too much information, information, we won't process it. I appreciate Amy being here. She'll be back for part two. As we continue to talk about really, what does services look like for adults, what does a meaningful life look like? Talk a little bit more about feet, the organization that she's the president of, and continue this very important conversation for our part of the spectrum that are more profoundly affected. Please join us. If you need help or resources, whether you're a parent, someone on the spectrum, a business or a community organization who want to know more or need help or want to share resources, please reach out to
[email protected] Inspire.
[00:42:19] Speaker B: ND invites you to TASTE of the Town Lake Houston Thursday, September 11th from.
[00:42:23] Speaker A: 5 to 8pm at the Humble Civic Center. Taste of the Town is the largest.
[00:42:28] Speaker B: Food and beverage festival in the Lake Houston area. Showcasing menu items from area restaurants, bakeries, caterers and breweries.
[00:42:35] Speaker A: It is guaranteed to be the food adventures paradise and one of the biggest.
[00:42:40] Speaker B: Social events of the year.
[00:42:41] Speaker A: It all benefits Inspire.
[00:42:43] Speaker B: ND's mission to create truly inclusive communities through education and engagement.
[00:42:49] Speaker A: Tickets are available now by visiting tot2025eventbrite.com that's tot2025eventbrite.Com or Inspire.
Thanks for joining us on Shining Inspiring Voices of autism. If you enjoyed this episode, be sure to follow us, leave a review and share with others who want to celebrate neurodiversity. Until next time, keep shining.
