Lynn Davison
I'm just so glad you had a chance to talk to me, because I want, um, I want your insights on what you think parents really need to know when they're trying to make this transition between school and, dare I say, work or adulting, or, I don't call it independence, because it's where none of US are independent. Let's, let's just drop that whole myth. We're all interdependent.
Dr. Francis Tabone
Yeah, well, you know, the biggest I actually just gave us, I was out at autism homes in the Hamptons last week. I gave a speech on all this. I actually have PowerPoint somewhere. But the biggest issue is that you got to go from being the decision maker to kind of the the advisor, or you're taking a lesser role in that. And I don't think parents are ready to give up that control that easily, because they're afraid, sure, and there's a lot to be afraid of. It's not like it's, you know, it's so easy, but, but you can't, you can't, you don't have the same. Same kind of control, and you don't have the same kind of influence, because you can pick what school you go to, I mean, you can pick what adult program you go to, but you can't influence that program to a level of degree on a day to day basis. It's going to make you know that's going to satisfy you and not kind of impact three other people, the kinds of support services and the and the opportunities are just not as rigorous as they are when the student is in high school. You know, there's a million adults in this building. I mean, we have 80 107 kids here, and there's 75 adults. So, you know, you can, you have flexibility to be able to do things, and the adult world does not, and, and, you know, I mean, that's, it's okay, but, but we've got to start letting our students and, you know, make more decisions for themselves, and you've got to be able to kind of work more collaboratively with agencies. That's the biggest thing. Is that you don't have the same influence anymore. You've got to, I'm not going to say compromise, but you have to work with your child to get the best fit.
Lynn Davison
I think too, you know, to support what you're saying is, not only do we not have as much because they're going to be doing the doing is the point so but also we don't want to do so much doing anymore. We really practice make their own decisions and figuring things out.
Dr. Francis Tabone
Do you? Do you? Are you aware of the concept of, it's in the state is a big deal. It's supported decision making, as opposed to guardianship, the whole process that that,
Lynn Davison
that's, that's something that's available in New York State, supported decision making.
Dr. Francis Tabone
So instead of guardianship, you can opt for something called supported decision making, which which is, which is, you know, scary for a lot of folks to think about, but the idea, and it's really the processes of getting there, is the most important thing. Because what you do is, you know, you develop a plan, a life plan, that surrounds yourself with decision makers, right? So who's going to help you with these decisions? Who's going to help you with these decisions? And those people, through intensive planning and lots of meetings and lots of support, develop this kind of plan. You can still have healthcare proxies and financial proxies, so you don't but what you're doing is you're developing more of a embedded kind of system of support for the student before they leave, as opposed to just having all the say so for yourself. So the decision making becomes shared, hence the name, as opposed to guardianship and and what's important about it, like I said, Is it really is the process of this, because developing that plan, I think, for any kid, person centered planning a map that that's that has to happen, you know, that's happened in high school and before they go out into the world, because there's just too much to take care of, and you need to surround the student. Needs to surround themselves with people that can help, and then find an agency that's going to, you know, help support that as well. So it's just an interesting i We're trying to get a lot of we do workshops and seminars about that here. And we have, actually, we have graduated the first self directed students in the country, in the New York State.
Lynn Davison
So good for you, because I've always thought it was self directed interdependence is what I want for my kids. They decide, but, you know, they recognize they have to have a caring circle,
Dr. Francis Tabone
right? And with, with, with guardianship, you're really giving over the rights to some stranger at some point, you know, if it's not, you know, handled correctly. So you don't want to do that, I think you know. So making, making those preparations, it's, it is it is scary, you know. But you have to start thinking about advisory as an advisory role, as opposed to doing for the child, because the more you're doing now, I say this to parents all the time, you're not going to be here forever. They're going to have to figure this out. They need to be like getting this set up before you know the inevitable happens. And the earlier you can start that, the better. And the more planning you do along the way, the better.
Lynn Davison
That's exactly the population I focus on. It's not just in New York State. It's all over. Oh, yeah, yeah. And I'm small. I've supported 150 families. I have 60 that I'm working with now.
So are they in your area, upstate,
Lynn Davison
Oh, just a couple, but they're all over the country. You know, Texas and Florida. There's a lot of Washington, DC right now, because I don't know, you know, so that I love that language, though, I love that thought. And is it a document you end up with, or what do you end up with when you're done?
Dr. Francis Tabone
Yeah, I mean, you get a, there's a, there's a, there's a, there's paperwork at the end of this, it's a document. It's it's a, it's a, it's a big document. It lists the people and the folks that you're going to be working with, and who can. Help you make decisions in times of need. It's got, you know, it can change. It doesn't have to. It's not a stagnant document, but it's, it's um,
Lynn Davison
so how does that? Because both my kids qualified for OPWDD, right? How does and so that's self directed services, right? How does, and I we have a care group, Prime Care, and then we have, you know, we have a fiduciary and a broker at it's EPI, is our local place. But how does, how does that work with all of that,
Dr. Francis Tabone
it should have no effect. Should be nothing. Doesn't matter. It's like, you know, if you have guardianship, you can still get OPWDD if you don't have guardian, you know. So either way, you know, it doesn't matter. It doesn't have any effect at all. I've got a room full of kids here too, adults. Yeah, yeah, forgive the noise in the background.
Lynn Davison
I can't hear it. I'm good. Okay, so where would I learn more about that? They have a website.
Dr. Francis Tabone
I can put you in touch directly with the folks. I mean, they would love to talk to you directly. There was a grant from they had a five year grant to kind of pilot and put this together and make it reality. And I think actually, Texas has jumped ahead of us in New York at this point. So it's not like it's, you know, the local thing, it's going throughout the country. I mean, it really does restore the dignity of the individual, right? So it's someone else does not have guardianship over your life. There's plans in place to help you make decisions that's regardless of your level of need. Because, like I said, if there was an issue, you know, if you felt the need that there needed to be healthcare proxies. If you break your arm and you don't want to go to the doctor, someone can override those things. And I mean, that was the first question list of questions we got about, what if my kid is sick and he won't go to the doctor? I said, well, then you can get a healthcare proxy. Make sure they do this. You know, further down the line, like I said, when you're not making the decisions anymore, who do you want to be involved in that student's life? So it's planning for that.
Lynn Davison
Sounds perfect. Okay, it sounds really interesting. I'll send you the folks. Thank you. Now, tell me about your book. Where did that come from?
I had written a book called it happened to me. It's a series of books.
Dr. Francis Tabone
So it's a series of textbooks guided for young adults, teenagers. It's really a textbook about autism. And so when I wrote that it was, I think, the 50th book in that series, and so that sold. And, you know, that's like, it's a reference book in a textbook. And then, because of that book, I was contacted to talk about hot topics in special education. I mean, at that point, I thought, really, the hot topic is always going to be transition and building transition services for students. And one of the things that was lacking for us as a school were the, you know, the curriculum for for adults, it's it's it's it is less. It needs to be a little more practical than then some of the things you you know in high school, it's still, we still teach, you know, in our adult program, which is for 18 to 22 year olds, we still teach all the basics, you know, reading, writing, arithmetic, but it's, it's more on a very applied level. So math has to do with budgeting and being in the community and spending money and going in. So what I got asked to do this book like figure out a topic, what do you think is interesting? And so I said, it really be helpful if I could develop, like a book, of activities that relate to adaptive skills. But isn't it? Really the most important thing was setting up a model. I mean, you could follow there are things in that book. There's a billion other things. You could just change the topic and use the same format. So it's really for educators to kind of unpack and kind of build it from. It's an example of what is important. So you know, the communication areas, the practical daily living skills, the self care skills, social areas, which is the biggest deficit for our adults. When you break down those areas, it just gets people started to think about those topics. And hopefully the book helps them to come up with their own activities and their own, you know, assessments, just to
Lynn Davison
build on what I've started, yeah, to make it come alive for them, yeah.
Dr. Francis Tabone
And to add, you know, it's, it should, like, add stuff in there about self care, you know, laundry. And you could do a million, I mean, there's a million thing in this. I mean, my adaptive skills, you know, you forever could be in here teaching, you know, we teach cooking and cleaning safety, and it goes on and on and so and the other thing is, the repetition is really important, keeping those things going afterwards, checking. And developing those routines are really the most important thing. So
Lynn Davison
routines, systems, right, right? Because I, when I read your book, I looked at it and I said, this is very inner like, this would be something I'd want to put in front of my kids. You know, of do this,
Dr. Francis Tabone
yeah, yeah. And hopefully, there was a group in in Vancouver that was using it like they had a they they had a book club with it, so they would talk about, you know, it's okay on its own, but I think it's the the nicer part is to, like I said, for educators to see it and replicate it and build on it, you know, like really going through that process of unpacking each of those activities, you know, you know, the reflection piece all that is, I think, is really important because it gives more permanence. But there's a group in Vancouver, and they had a zoom book club with it, and they would go through the activities every week and talk and share about the experiences with doing laundry or doing dishes or whatever. And it's helpful, you know, it's just, it's really helpful to to to, you know, be practical, talk about the practical activities, but then have a place to unpack, to share that one's experience, to talk about what they did, how they did it, you know, to reflect and to get advice and move on that. The other thing is that book is geared more towards students who don't have a lot of independence. You know, there are other topics and things that might that kids might be, you know, but you could do a whole thing on budgeting and money management, that is, you know, the more more in depth, that's what
Lynn Davison
it's for. The big difficulty I have several. I call them members, graduates that have four year degrees and can't find a job in computer science. Yeah.
Dr. Francis Tabone
So it's, it's, we do we have a vocational program here. It's, it's great to have the skills, you know, but it's also you need to have the interpersonal, excuse me, skills as well, and if you don't have them, to be able to articulate that you don't have them. And this is what compensations you need to work in an environment like this, right? So I'm not good with eye contact. I can say that up front, I'm person with autism. I don't have I don't have good eye contact. That's one of the things you'll get to know about me. I can do the job well, you know, self advocacy is a big is a big piece of this and but a lot of our kids, it's like 19% of our students are getting jobs now, you know, it's abysmally low, and it's because it's this. It there's a couple of things. It's sustaining, staying on the job, right? Keeping the job is hard because you make a mistake, or you do something wrong, or you don't know how to get out of it, or you need, need help, need not asking for help. You know, those kind of skills have to be taught explicitly, also metacognitive stuff I need to know when I don't know something. So I can ask for help, and somebody can help me do it, and I can get explicit instruction, you know, explicit instruction and self advocacy, explicit in self reflection, really being able to effectively appraise one's self concept as opposed to what you think you are. Those are all skills that you have to work with to teach them directly.
Lynn Davison
Yeah, that's what I do every week in my in my live in my online program, twice a week, both and I teach both parents and graduates so they have the same they learn the same stuff. Obviously, the discussions are a little different, but we do an hour and a half on the same topic, and it's usually it's it's on the the three areas that I think just are more intensely difficult, getting things done, managing stress and people.
What was the third one? Was last one people absolutely interpersonal skills.
Lynn Davison
Those are three things that everybody struggles with, but I think just having autism makes them a whole nother degree of difficulty.
Dr. Francis Tabone
Sure we spend we our students from ninth grade on, do an internship. And so in the ninth grade, you might do two or three hours a week, and by the time you get to our transitions, you're doing four to eight and you're out in the community with a one on one job coach who's like monitoring and watching and redirecting and moving, you know, you around. We have OTs and speech and language colleges go into the field and work with them also to make sure they're doing it's a lot of like on site, getting used to this experience and managing it. We have then we bring them back for you know, after their internships, once a week, they'll have a forum where they talk about that experience, reflect activities geared towards improving certain areas. But it's a lot of very. It's got to be, you know, that explicit training is not something that most people do, and we kind of gloss over it, you know, it's, it's great that you can teach, you know, coding skills, I mean, but they're useless in an environment that requires you to be, you know, interacting with people on a regular basis, and you can't so, you know, and even just getting past the interview. Well, just without being able to advocate, you can't, you know, it's not gonna happen. Yeah, the applicant Sure.
Lynn Davison
I mean really talented, great, sharp kids that just aren't getting
Dr. Francis Tabone
anywhere. It's really a lot of there are a lot of adult programs in the city here that are job half HRC has some really good supported employment pieces, not, not all, not a lot of them are full time work. You know, most of it's part time, but you know, it's something, and that's what's needed on top of,
Lynn Davison
I think part time is a great place to get started. Yeah, sometimes more than that is just a little bit more than they can handle,
Dr. Francis Tabone
yeah, and, I mean, you know, volunteer work, all that is equally important, and we have to make opportunities for that, projects
Lynn Davison
that they can do, that they can point to and talk about in an interview. All that's good. You know, they light up when they're actually doing something that's helping somebody else out. Absolutely.
Dr. Francis Tabone
I mean, there's, it's, it's, we employ like eight or nine people, because all graduated from our program at some point. We have three power professionals who've been with us since they were in like third grade. You know, it's like, they laugh, and now they work with us. It's amazing our facilities. One of our custodians is a graduate from about five years ago, lunchroom helpers, people. I mean, we have, and it is a valuable, a really valuable, group of people that we have working for us. And the benefits are remarkable, because this population does not. They're your most loyal, hard working, you know, group of people. They're not. It's, it's amazing, you know,
Lynn Davison
yes, yes, they're, they're ideal. It's just that we have to get, you know, a couple things in place to make it so they can, they can make a contribution, which they really, yeah, absolutely. So what do the right what do the parents do who you're happy to see? I know there's going to be parents you're not always happy to see. So what do the parents do that you're happy to see
Dr. Francis Tabone
to support their Well, yeah, you fill out all the paperwork. Get your ducks in order. You know, it's like OPWDD, paperwork, eligibility, Medicaid, Medicare, those things are critical and and for the most part, people are good with that. The move for self directed funding is great if you are ready to take another full time job, which is sometimes creating the program that you're going to spend that money on. We run now. We're running an adult Alumni Program four days a week. We could probably run in three of them, because the people are just they want to stay on. I The parents I'm happy to see are really, you know, getting their paperwork done. We have a transition program so none of our kids leave without them knowing, without us knowing where they're going next. So what programs? And you know, some 99% of our, 90% of our kids are, you know, the step is already there. They're already in their program, and we're in good shape. So parents, it's just the response, it's just the logistics. It's a sucky job. You know, it's paperwork, it's taking your kid for that neuro Psych. It's all those mundane things that you got to get done before anything happens, and you can't drop the ball, you know, you can't drop the ball, and you got to be realistic about what, you know, opportunities there are, you know, I have, I have, I have the same conversation with groups of parents in our program, which is like, you know, what college is my kid gonna go to? And I'm saying it's not a personal going out of college program, and you're not going to they would struggle. They wouldn't get past the first semester. There's not, you know, and some parents will just not listen. They would just push their kids into areas that they shouldn't be pushed into, and that happens, take care. Take care of the logistics. And his
Lynn Davison
name. I can't remember his name, but the guy that right wrote the book with Oprah about running your life. He's a Harvard professor. Anyway, I was just listening to him saying, you know, my kid just wasn't going to be a college student. He said I was the only one in my family that didn't have a P. HD, I mean, that's the kind of family I came from, so that was the expectation around it. And he said, not with Carlos. With Carlos, we figured out it was not really smart to send our 18 year old to a place where other 18 year olds were going to give him advice about life, right? That makes perfect sense. It makes perfect sense. So I went, Oh, no, I'm not gonna forget that line. So
Dr. Francis Tabone
yeah, things have shift. Shifted a lot in the work, in the work world where college is not the most important thing anymore, you know, it's it. There are other opportunities. I'm educating parents on that as well. College is not for everyone or any you know, it's just not, and we put too much emphasis on it, as I say this as I'm sending my daughter off to college next year.
But that's humbling, isn't it? It's awful. Yeah, I've done it, and we have six so, you know,
Jesus, oh my goodness.
Lynn Davison
So we've done the whole world of experiences, yeah, yeah. And they're all different, right? None of them are the same. So we never got good at any one of them. You know, you just keep learning as you go along. But, yeah, yeah, yeah. So what are the graduate what are the kids in the program do? What are the young adults in the program do that? You know, make you make you glad they're there.
Dr. Francis Tabone
Our numbers are very impressive. We have about an 83% work volunteer rate, so 83 to 80% of our kids are out there engaged in some work activities. Their activities range if they're staying at home for now, they're working with agencies like HRC Yai or job path to find supported employment. And the parents are doing self directed funds. They go to classes here and there once a week. Or they they're involved in a you know, there's a couple, there's a bunch of Invictus. I hope. You know Invictus, they have basically kitchens all over the city, where they teach cooking skills and the kids going to work and actually make products that get sold. Love Michaels, which was another one that we work closely with, where they make granola and they sell the granola. And so these are work educational situations. So they're still taking care of the social, emotional, the educational and the work vocational piece, all in one, you know, place. So some of the some folks do that, some go into into like group, group living facilities, like triform or Green Acres, something like that, where they're living on a campus and they're working and they're they have a whole program for them and the and the parents who are doing self directed are really putting together programs for their kids. They're kind of piecemealing things and putting them together with the support of, you know, comhab workers and whatnot. So it's really varied. We have a lot of students who work part time. We have about 15 to 20% of our students who work full time, you know, got gone out and got full time jobs. So it runs the gamut for us. Some go into day habits, and they have about wall programs getting less and less and more more people are opting for the self
Lynn Davison
direction. Yeah, that makes a lot of sense. Well, thank you so much for all your time? Wow, there are a lot of options out there, but finding them and getting them all in place is the
Dr. Francis Tabone
Yeah, there are a lot of options and you can and I think the most important thing is to be connected with other parents and families who have the experience, because that's really where you learn from. We have a parent group that's here every other week, and so topics range, and people just come and they just really just chat with each other to be able to share those experiences that's your most valuable, you know, and groups like yours. I mean, if you're working with families and parents, and these parents, these experiences are shared. So it's a really wonderful way to spread the word.
Lynn Davison
It really is. Oh, well, blush, you know, so glad you're doing the work you're doing, especially in New York City. I don't know how you do that. My son lived there for 10 years, and then covid hit. So, you know, move back to Rogers. Yeah, that was really
Dr. Francis Tabone
awful, awful. I never, never want to do that again. Teaching kindergarteners with autism by Zoom is not something anyone ever
Lynn Davison
certainly less than ideal, yeah, well, no thanks again for all your help. I appreciate
it sure good to talk to you.
Lynn Davison
Bye, bye. Francis, bye.
