Working Together for the Autism Community, with Dr. Michael Alessandri | EDB 290
UM-NSU CARD’s Dr. Michael Alessandri shares the importance of organization partnerships in supporting the autistic community.
Dr. Michael Alessandri is the Executive Director of the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD). He is also the Chairman of the Board at Els for Autism, and Board officer for Casa Familia, a housing project in Dade County. Dr. Alessandri has been a professor at UM since 1996 and has worked with individuals with autism and their families since 1981 in various capacities. He is a Phi Beta Kappa graduate of the University of Rochester, and obtained his MS and Ph.D. in Psychology from Rutgers University. At the University of Miami, Dr. Alessandri, in addition to his other roles, also serves as the Department of Psychology’s Assistant Chairman for Community Outreach and Engagement. Dr. Alessandri has presented, consulted and published internationally on developing appropriate and effective educational programs for students with autism. In addition, he has received numerous research and service grants and several notable awards within the field including the Autism Society of America’s Wendy F. Miller Autism Professional of the Year Award and National Autism Program of the Year for UM-NSU CARD.
Dr. Alessandri has also received numerous other community service awards, including the March of Dimes Community Excellence in Health Care Award (2007), the Health Services Coalition Outstanding Community Leader Award (2009), and the Parent to Parent Excellence in Family Advocacy Award (2010). He was also named one of the Ronald McDonald House’s 12 Good Men (2008) and the Dewar’s 12 Man of Distinction (2007). In 2012, he was selected by the Children’s Trust as the David Lawrence Champion for Children, one of South Florida’s highest honors for community service. In 2016, the Greater Miami Chamber of Commerce named him their Visionary Leader of the Year; and in 2017, he was recognized by the Dade County Bar Association with the Fostering Inclusion and Diversity Award. Recognizing his outstanding career achievements, his alma mater, The University of Rochester School of Arts and Sciences, named him the Distinguished Alumnus of 2022.
For information about UM-NSU CARD, visit: https://www.card.miami.edu/
For information about Dr. Alessandri, visit: https://people.miami.edu/profile/fb8af2465e6219dc0d6be35a692a7472
For more about Casa Familia: https://casafamiliainc.org/
For more about Els for Autism: https://www.elsforautism.org/
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DR HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we have returning to us taking time out of his busy schedule, Dr. Michael Alessandri, who is the head of the CARD, the Center for Autism Related Disabilities for the University of Miami – Nova Southeastern University. Lots of other hats he’s going to tell you about. Welcome back, Michael, thank you for being here.
DR MICHAEL ALESSANDRI (MA): Thank you so much. Great to be here. Always happy to return, so thanks for having me back.
HR: Let’s talk about one of the organizations near and dear to your heart: Casa Familia.
MA: Yeah, I would love to I have been involved for quite some time. I think really, from the very beginning, this organization was founded here in Miami Dade County, really by a small group of families, but mostly moms. And I think all of the founders really are, essentially, I think they’re all moms actually, who are really concerned like all moms and dads are about where their children will live when the parents are no longer here. And these are all parents who have — and not just autism, these are varying disabilities, some with intellectual disabilities, some with autism, some with Down syndrome, some with intellectual disabilities and genetic disorder other than those conditions that I mentioned — and they, you know, banded together and, you know, started, you know, block by block bit by bit, putting an organization together with the idea that they would create some kind of housing for their children, that would be sustainable, that would be affordable. And that would be another choice. That was a very important variable in the very beginning of all this, and really the determining factor in me getting involved because I really wanted to make sure that this was not a forced choice for anybody. But this is one of many choices, that individuals with developmental disabilities could choose for themselves. If you want to live alone in the community with support, and community based housing, that’s fine. If you want to live with your families at home, and their families want that, that’s fine. If a group home situation makes more sense for you, that would be fine. And this is just one other option.
It’s an affordable housing community that will have multiple phases. Phase one will be which we would think we’re breaking ground this year, October finally, very excited about that we’ll have 50 apartments for individuals who live essentially independently. And phase two will be more of a traditional group home model that would be fully supported. And these will be considered by national federal standards and Florida regulations as well. I mean, we’re following all the rules, these will be affordable housing apartments at a rate that is reasonable and affordable housing rate, which right now in Florida is way better than market rate for for housing and and the market rate for housing in Florida is completely unaffordable for an individual with a developmental disability who may not work full time, who may not be getting an optimal wage, who may have reliance on Social Security, and met waiver benefits and Voc Rehab and other you know, other the myriad of benefits that may be available, it would be just entirely unaffordable to live independently or live in the community with even some support. So having this be an affordable housing community was absolutely essential for what we believe to be a sustainable model of employment, we have housing, we still have a lot to learn.
We haven’t broken ground yet, but we will, God willing this year, there’s that I mean, I can’t even we could not cover in one episode, all of the challenges that come with trying to build a community like this for for people with developmental disabilities. And as you would expect, a lot of people have a lot of different opinions about whether this is the way forward or whether this is a way backward, right to be completely frank. And I think my perspective has always been: what do the adults want themselves? So I’ve had lots of conversations with adults in this community about why they want this kind of housing for themselves. And most of those reasons centered around “I want to live with my friends”, right? And their friends, at least for many of them not all of them are other people with developmental disabilities and they want to live relatively on their own, not with their parents, right until their parents are no longer here. So I listen to the voices of the people who would be living here. And I also made sure that the board understood that I was very invested in this being one of many options that anyone could pursue that that to me that choice is very, very important in this whole conversation. Without choice then we are going backwards, but with choice…
HR: When you have options to choose from you tend to make better decisions.
MA: I totally agree with that. And I think a range of options is also necessary for the range of people with developmental disabilities that we have in our world in our community. You know, the intermediate care facilities might work for some group homes might work for others, living alone in the community, with some support could work for some still others and living completely independently, had also worked for some. And sometimes we see this in schools where you have students with autism in a school with also with students with with Down syndrome, or students who are neurotypical like this, the range of social emotional, communicative experiences, I think, creates a richer living environment, just like I think it creates a rich, richer educational environment. And I think that was something also very important from the start that this was not just going to be an autism, housing development, right. This was really a development for all people with intellectual and developmental disabilities. And I think that variation is a gives the community a richness, right? That would be similar to what you’d see in just a anybody’s community, right, you’d see a range of life experiences. And I think that’s really kind of a beautiful thing. And again, you know, I think, going back to what I said earlier about making sure that we were along the hallway of developing this project, really listening to the voices of those people who might live there about how it should be designed, what amenities should be in place, you know, how if there was going to be any kind of instructional programs or life skills programs, what would what would those look like? Everything from the design of the property to the inclusion of a pool and a basketball court.
HR: This is a natural segue to one of your other hats. Tell us about your involvement. And with the organization, the ELS for Autism.
MA: I would love to. Yeah, this is I’ve taken on a big role there of late on top of these other big roles. And so I’ve been on the board for a little while, I’ve been a very active board member. And I’ve known the Els family now for quite a number of years, I think we go back, gosh, to 2008, or nine or so I actually introduced their current Executive Director Dr. Sotelo to them she was someone that I worked with for 12 or more years, that CARD and then even before CARD, we were friends and colleagues and I knew they were looking for someone, you know, who had a pretty impressive skill set. She was, she was the one that came to mind. First and foremost, she’s a remarkable clinician, but a brilliant leader, and I think, has a work ethic, kind of second to none. And I just thought she would really dive in full throttle to this opportunity to build something, along with the Els family and their co founder Marvin Shanken. Build something that didn’t exist in Florida, so and so I got on the board a few years after she was appointed, and had been proudly serving. And, and then of late, you know, the opportunity arose. Our former chairman of the board was stepping down and, you know, people kind of looked around the room to see who would step into this role. And I was like, I’ll do it. Of course, I’ll do it. I you know, I’ve built something here. already. I’m in my 27th year old card. I know, I know how to build something I know how to build community, I know autism, as well as anyone and you know, I just kind of know how to get stuff done. So I jumped in and, and it’s great actually, I’m really enjoying it. There’s it’s a beautiful 46 acre campus in Jupiter, Florida. But they have branches around the world, the UK, South Africa, Canada. Their impact is truly global. They have programming that really resonates with me because card has a lifespan program. I really want to be involved with other programs like ELS that are also lifespan…
HR: Tell our audience — when you say lifespan. And I remember when we spoke to Marlene Sotelo when Exploring Different Brains, but talks about the concept of lifespan and how the ELS for Autism combines it all under one roof so to speak.
MA: Yeah, I mean, it’s really all about you know, diagnosis through death essentially. I mean, it’s it’s a kind of a dark way to frame it, but it is really the most descriptive way you want to have. You know, if you want to be a truly lifespan program, you want to be able to offer your clients A place where they can stay over the course of their need for treatment. And for some, it’s just early intervention. And then they’re able to move to a more inclusive, other kind of community based setting. But we at ELS have early intervention services, we have a host of therapeutic services and programs, we have two charter schools on the campus that allow children to be educated from from kindergarten through 12th grade, we’ve invested a lot of resources and have secured a lot of grants to build an adult services program and our Adult Services Building is under construction right now. So we have programs that are geared towards having adults be in day program on the camping day program on the campus. But also we have a new employment initiative called “you can employ”, we’re going to be working with businesses from around the country to help them be better prepared for everything from interviewing to onboarding, to supporting staff in the workplace. So they can be better prepared to engage people with autism in employment and sustain that employment over a longer period of time. Because we know autism employment is the data are terrible. Still, there’s an enormous underemployment, enormous unemployment there. And even worse, in some ways, there’s a lot there a lot of people who get employed, but can’t keep their jobs because they’re not well supported. And the infrastructure within those companies is in such that it allows for those individuals to be successful. So you can employ, you’re kind of one of the first to know Hackie, we are very ready to launch, we’re going to do two pilot sites starting in May. I’m very involved in that project, and then it’s going to go, it’s going to go where it goes. Hopefully it goes International, hopefully will involve national and multinational companies in creating large scale initiatives to employ and support people with autism. Across the globe. We are aiming big.
HR: Well, I salute you and you know, one of the angles in some of the the different big company people I’ve spoken with is trying to show them where they can make more money. In other words, if you hire the right Aspie for the right job, they can do better than the so called neurotypical. It’s a matter of, Stephen Shore says, harnessing from a strength based model as opposed to what they can’t do.
MA: I think that’s — I mean, Steven is a great resource for that, I think. And it’s absolutely right. And we saw the same thing with Rising Tide Carwash, which I think you know.
HR: Yeah sure
MA: now that well, and I, you know, we partnered with them as well to create an online tool, a course to teach families how to create entrepreneurship opportunities around those unique skills that their kids have. And it was all based on this concept of the autism advantage. And it’s all about finding the right employee for the right job. And that goodness of fit can produce a higher quality product and also greater productivity. The carwash business is a great example, I think they bought the carwash initially, and it was maybe they were washing 3,000 cars a month. And then they put people with autism in those positions. And now they’re doing 17,000 or more per month, we worked with another business that shot that saw their error rates in the product that they were producing dropped dramatically when they put people with autism in those positions. So it’s just it, those have to be carefully curated, you have to find the right employee with the right skill set that matches the job that the company needs to fill. And you can do that.
HR: to do that people, employers or anybody else have to look at each individual. As unique as we started different brands because everybody’s brain is different. You can’t have one size fits all. And that carwash is a perfect example they are looking for that skill set those strengths. And the net result is profit. The company makes money, the people have jobs and enjoy it and do a great job and so forth. And that can be at all different levels or car washes over here. Research is over there. I mean, it’s everything in between.
MA: And even within the carwash there’s a range. There are individuals who maybe had other jobs and higher skill sets. But it didn’t work because the businesses didn’t have the support that they needed to make it work for that employee that’s where “you can employ” will fill a nice void because they’ll be able to work with the businesses from the get go everything from developing the job advertisement to the developing the interview process to supporting the clients as their onboarding and then in an ongoing way supporting them going forward. We have another organization locally that I’m involved with called the De Moya Foundation that does just that. They look at the employer as the partner as opposed to the employee and really provide the support that allows the client or the employee to be successfully engaged in employment for a much longer period of time. And you’re right, it’s about that it’s got to be about the bottom line. The one thing that Tom and John D’Eri, my good friends from Rising Tide Carwash taught me is that this can’t be about charity, you’re never going to involve the wider business community. In autism employment, if it’s not about the bottom line, it has to be about the revenues and the costs. And you know, business, you’ve got to talk business to business. Right? So charity is only going to take you so far.
HR: I’m going to ask you a question, because you are involved with so many different organizations. And this is something we try to do with Different Brains. Because we’re no threat to anybody. We’re not a service provider, we’re just trying to get the word out on all the great organizations like all the ones and all the great individuals, such as you. How do you propose to get all the different organizations to work better together?
MA: It’s a great question. And it’s one that I’ve certainly thought a lot about are these. I mean, I, I met my first kid with autism in 1981. So I’ve been in this business for 42 years. So it’s not like just a couple of years. And I think, you know, I think your comment is the right, the first thing you just said earlier about, you’re not a threat, I think the most important thing is for every organization to realize nobody’s a threat, there’s so much demand, right? There’s so much need, that we could double the number of autism organizations we have now and still not meet everybody’s needs. So, you know, my career’s always been about partnerships. It’s always been about strategic partnerships, partnerships that make sense for the other organization, for myself, and ultimately, for the community as a whole, I mean, there’s, it’s not a surprise that I’m so involved in so many other organizations, because I see the need for us to all be connected in some meaningful way. And that’s everything from, you know, large international advocacy groups, if you will, to statewide or local groups that are doing their part to service providers, like myself that are doing our part, and then everybody else in between the doctors, the teachers, the therapy centers, like we would there, honestly, there’s no need for any competition in this space. Because the demand, I mean, I’m telling you, the demand is, is through the roof, I think it’s overwhelming some days when I sit back and think about how much we’re doing.
And still how much more needs to be done. Like you think every year of your career, you’re closing the gap a little bit more. But you know, you see the prevalence rates now, one in 36. So you may have thought you were closing the gap, but then you get this flood of new clients who discover that they have autism, or they have a need for some kind of support. And you realize, you know, and maybe it’s age and wisdom, I don’t know what it is, but I I don’t see threats anywhere anymore. I just see opportunities for new partnerships, because that’s the only way we’re gonna get it done. I know my organization can do its part, but we cannot do what everyone in our community needs. And I also think that, you know, Florida gets a bad rap, I think sometimes because of, you know, just the way education is funded, maybe just different perspectives on, on how we care for our citizens from an economic perspective, but they’re very few. And in fact, I will tell you, I don’t know any other state, in the nation or even any other country. And I’ve been to dozens of them, that has a system of care for people with autism quite like ours. You know, we have a network of services through card into all of our partnerships around the state that I think is kind of second to none. I mean, I don’t have any data to support that in a quantitative way. But I have been around long enough to know and worked in enough states to know there’s nothing quite like what we have built here. Just from a foundational perspective, could we have higher quality education? Could we have more access to high quality ABA, could we have more refinements in in our insurance industry, we could do all of that better? For sure. But in terms of system of care, I think we’re doing pretty darn well in the state of Florida. But you know, with room to grow, of course.
HR: That’s encouraging. It’s encouraging. How can people find more about your work? How can they find out more?
MA: Sure, I mean, they can simply contact me at CARD. Our website is quite easy. It’s www.card.miami.edu. The CARD system for the state of Florida also has a 1 (800) 9-AUTISM line, 1 (800) 9-AUTISM, you can call that number and be connected to whichever card is closest to your home. And then of course, you can, you know visit visit my personal site at the University of Miami website, which you can find through the CARD website. So I’m, as you know, and I think everyone who knows me knows I’m crazily responsive. I don’t miss emails, I don’t ignore phone calls. I, I’m very quick, sometimes I’m responding at 3,4, 5 in the morning. Because I don’t sleep, I sleep about four hours a night. And that seems to be sufficient. So I’m pretty much very easy to contact, if you’re having difficulty contacting me, you’re probably trying the wrong way. Because I have pretty keen to connect with people because I, you know, I learned early on in my career, that families who have children with disabilities need to know that they can count on someone. And so I really, you know, prioritize my responsiveness probably to a fault in terms of my own well being. But at the end of the day, like you, I really love my work. And I really love the people that I work with. And I think I have a responsibility, moral, ethical, whatever you call it to be to be available and accessible to them when they need me and when they most need me in particular.
HR: Well, I think the whole world is lucky to have you, Michael, because you’re doing great stuff on many, many different fronts, all you need is about 36 hours in a day, I would guess.
MA: That would be nice.
HR: And I was going to ask you, how do you survive? I was adding up all the hours, you’re doing it with all these different things? Well, you answered it, you don’t sleep.
MA: I’m a notoriously bad sleeper. But I will, you know, I do take, I do make time for myself. And I travel quite a bit. But I don’t turn I don’t ever tune out. I’m always on call. cell phone’s always ringing, or the emails are always coming in. I never take days even when I’m in Europe from a vacation. I’m always responding because I just think it’s not work. It’s like my life, right? So it just becomes more palatable to just just be all in than to try to cordon yourself off in ways that don’t make sense to you kind of spiritually. Now. So I yeah, I’m happy to be in a in a restaurant in Paris, having a glass of wine, answering emails, if that’s the way it’s gotta be.
HR: Well said. And Michael, is there anything we have not covered that you would like to cover today?
MA: I mean, I think I want people always to know that there’s more to be done. You know, I can I have a tendency to paint a very rosy picture. That’s just the way I approach life and work. But it’s not easy. I mean, our families struggle, our adults with autism struggle to fit in and find their place in the world. It’s a journey that is not, you know, always rosy. And I think I want people to understand, despite my, you know, very positive outlook on the field, and on the people that we work with that it is it’s not easy. And I want people to be, you know, accepting and loving and appreciative of the uniqueness of everyone that we work with, with autism and other disabilities. You know, one of the other projects we have, which I’ll end with, I guess, is, is our Autism Friendly Initiative, where we work with local businesses and museums and art centers and medical facilities, urgent care centers, Pediatric Dentistry, pack practices to make to train people, but also to make those spaces and places as friendly to people and families of children with autism as possible. Because it can be very isolating. And you can you can really go into, you know, to end where we started, you can really go into lockdown as a family of a child with autism when you’re afraid to go out into the world not knowing how other people are going to react to you. So we’re trying to make the world more open and friendly through these initiatives so that families can feel comfortable going out into the world and accessing the world in a more meaningful, more positive way with hopefully a community that actually understands and supports them more than maybe they had in the past.
HR: Well, Dr. Michael Alessandri of NSU CARD of University of Miami of the ELS foundation of all the different hats you’re wearing and doing, which I’ve only covered a couple of them. Thank you so much for being with us again. We look forward to having you back in the near future. Thank you so much.
MA: Thank you, Hackie. Great to be with you.