CARDCast Number 1
 February, 2020


Ann-Marie Orlando: Hello and welcome to the CARD cast, a podcast of the University of Florida Center for Autism and Related Disabilities.  I am your host Ann-Marie Orlando, an associate director at CARD, and research assistant professor in UF’s Department of Psychiatry.

The mission of the UF CARDCast is to share with our listeners relevant information about who we are, what we do, and what we can do to help you.

Over the course of our podcast series, we will be talking with members of our own staff as well as our constituents and their families, service providers, and researchers who are doing groundbreaking work in the field of autism.

We also hope to give you a fuller picture and a better understanding of autism spectrum disorder and related disabilities such as dual sensory impairments and developmental disabilities with sensory impairment.

Thank you for joining us today.

Our first guests are Dr. Greg Valcante, Director of the Center for Autism and Related Disabilities and a research assistant professor in UF’s Department of Psychiatry and Mr. Art Wallen, an assistant director at UF CARD.  Welcome and thank you both for being here today.

I’ve asked Greg and Art to be our first guests because they were here at the very beginning when CARD was created, 27 years ago.

So Greg, tell us a little bit about your background.  How did you get into the field of autism?

Greg Valcante: I got into the field of autism when I was a student in special education at the College of William and Mary and started tutoring students with autism.  My first job in Virginia was as special education teacher.  And it just turned out that the students that were assigned to my class were mostly students with autism and related developmental disabilities.

So after coming to the University of Florida for my graduate studies I continued my interest in autism and began working in but was called the children's mental health unit, which was an inpatient program here at the University of Florida.  So, I’ve been in the field of autism for quite a while now.

So you were here with when CARD first came about. Right? So, who else was here with you at that time?

My buddy, Art Wallen was here with me at that time.

Art Wallen: That’s right. And I understand that you wanted me to answer the same question and my background is in the field of behavior analysis and applied behavior analysis.  I started first doing research in the field of autism.  It’s very common now, for instance, for people to use blood pressures medicines for different problems associated with autism.  We did some initial work with Dr. Ralph Mauer.  We ask questions about the action of certain blood pressure medicines and how it could help someone.  That research also led me to work with Greg and others on that children’s mental health unit.  
I was also psychologist before that at a state institution that had many individuals with autism and other developmental abilities. So, I was very familiar with the disability. And I have to say that at that time it was a very uncommon and something that we didn't see that often.

Ann-Marie Orlando: So, the two of you were there working in the children’s mental health unit right?  And also there was you mentioned Dr. Ralph Mauer.  And I know he was instrumental with you all in terms of writing the initial grant for the Center for  Autism.  So how did that come about and which universities were involved because it wasn’t just CARD at UF right?

Greg Valcante: The CARD program Center for Autism and Related Disabilities came about as a result of parents.  Parents who needed and wanted services for their children that were not available. Particularly, parents of adults with autism who were no longer in school and had no services virtually available to them here in Florida and they began lobbying their legislators in 1988.

They recruited the help of professionals in the field.  Dr. Mauer was one of them, but also Glenn Dunlap at the University of South Florida University South Florida, Peter Mundy at the University of Miami. and Amy Wetherby at FSU.

So, finally the CARD centers were funded in 1993 for those four sites: for University of Florida Gainesville, for FSU, for University South Florida in Tampa, and for the University of Miami.

Ann-Marie Orlando:  So, about how many people across that state, how many constituents do you think we started serving at that time?

Greg Valcante:  A small number. We had in the double digits maybe when we started out maybe 50 or so that we start out with.

Ann-Marie Orlando:  Is that right?

Art Wallen:  Yeah, they were ex-patients of the children’s mental health unit. We quickly added to those numbers though.  Because we we served 27 counties, which were, we went south Osceola over to Brevard county up to Nassau County over to Hamilton County down through the bend and down to Hernando County.  So with 27 counties you can imagine, the numbers moved quickly.

Greg Valcante: We he started out with me as a full-time staff member and artist halftime staff members so we started out with 27 counties and 1 1/2 people to serve them.

Ann-Marie Orlando:  So how did the other CARD centers get added?  Because you started with four and we currently have seven across the state.  How did those get added eventually?

Greg Valcante:  added gradually.  The first one and it was at the University of Florida Jacksonville campus through the pediatrics department there.  That was followed by number six at the University of Central Florida, which was a great relief to us for them to handle that area. And then the last one added was at Florida Atlantic University down in Boca Raton area.

Ann-Marie Orlando:  So how was it that all the CARD centers became attached to State Universities?

Art Wallen:  My understanding was always that universities were the centers of discovery and for technology development, and for technology transfer. And I'm fairly certain that the parents in the state of Florida saw some of the things that have been done at each of the universities, and were confident that we could do the sort of work they were asking.  

We also just come off a grant where we had done some work with students who had sensory impairments.  And that Greg and I and another professional, Donna Gillis, we traveled around the state.  We had some experience in doing this sort of technical assistance work and individual assistance work with those students that had sensory impairments.  

I am certain that the universities were chosen also because of their stability.  And the structures that were in place that could be taken advantage of. And, at that time, I believe there was a true sense of shared mission that most universities and we were given many things to get us started, like office space and and other resources that because we were in the medical school here, they helped us.

Greg Valcante:  The other thing that's important to know is that this centers came about because of a statute.  A law was passed that said there shall be regional resource centers for autism.  And they will be located at these university sites. When a law is passed by the legislature, there needs to be a state agency to administer that law. And so the Florida Department of Education was charged with administering the program and has served as our administrative fiscal contact and our supervisory contact and our connection to the state throughout the 26 years that we've completed.  

Ann-Marie Orlando:  That’s great. But, at other universities they are in different colleges and departments, right? They are not all are associated with their Department of Psychiatry and College of Medicine. Is that correct?

Greg Valcante:  All in different colleges.

Ann-Marie Orlando:  So, I would imagine that at that time this was just starting there have been changes in the challenges that you all faced and the focus too of what you were trying to do.  Do you think that's changed to 27 years your challenges and your focus?

Greg Valcante:  Well, it’s changed in many ways, But, one thing has remained the same is that we are a small staff.  We have grown from one and a half people to 12 people now at our CARD center, but we are still vastly outnumbered by our constituents.  So, when people come here to our office I like to remind them that there are 12 of us but there's 5000 of you.  And we are one of the smaller CARD centers in terms of population based.  So, we you know the challenge of trying to meet the needs of all of our constituents with a small staff has been the same for 27 years.

Art Wallen:  Yes. I agree with that I know that we had conversations early on that took this form that we thought that we would we would work for seven, eight, or nine years in that all of the capacities of the communities would be built and that we would work ourselves out of the job.  We talked about that like what what what changed significantly where the numbers, the sheer numbers of individuals that been diagnosed with an autism spectrum disability and those with sensory and dual sensory impairment.

Ann-Marie Orlando:  And the prevalence rate has really changed in that time.

Great, Art. So you were talking about how the how the population that we serve has really changed over that time, in those 27 years right because of prevalence has really changed along with that. So, can you talk a little bit about how that about the prevalence issue is changed globally but also how that's impacted us locally?

Art Wallen:  Well, it has impacted the school districts. It has impacted the adult service arena. It has impacted communities because of the focus on community services that started with when we started the CARD center. And we really did want the schools to be able to include these students in a way that allowed them to access all of the opportunities that every student has, which has been a challenge. 

With 14 counties that we now serve, CARD has always been an unusual placed agency because we had to figure out how we work with all the different services that we were asked to work with.  At the outset, people didn’t know what we were or what are what our mission was or how we would work or whether they could trust us what it is we were bringing. and We we've tried to make to comfort them and in the sense of we were bound by doing things that were evidence based; that we had a non-endorsement policy as part of our administrative rules. Which was very important because through the years there've been many things in the field of autism that fads and all kinds of claims some of which were quasi-science and some of which were good science.  We had and I think one of our roles was to work through that and be able to share information that was that could be trusted and that was meaningful and effective for individuals. 

Ann-Marie Orlando:  So, talk about little bit about the missions that we have here at CARD.  We have four essential missions.

Art Wallen:  At the outset and forever more for the 27 years we've been here, we've always done individual assistance, which takes the form mostly of consultation and training. When we work with families or if we work with individuals adults. Individual assistance for the three-year-old looks very different than individual assistance for a 35-year-old. For a three year old we’re working toilet training, we are working on language development, we are working on play, and we’re working on relationship skills.  The adult we may still be working on relationship skills, but we're doing in the context usually of housing, employment, transportation needs, and accessing needed financial supports that they they would need to access their housing.  

The other services we do, technical assistance, which was always designed to build the capacity of agencies and professionals that had asked for that that assistance.  So we would work with many schools, we work with adults service agencies, we work with law enforcement agencies.  The technical assistance piece always been when a professional or an agency wants to build their capacity to serve the individuals that are eligible for CARD.  

The third service we do is training and that a takes a great deal of our time, it always has.  We knew the outset that you know give a man a fish he eats for a day, teach a man to fish and he eats for a lifetime, if he has a fishing pole, which we learned much later.  

The last thing we do is public awareness and public education.  And that takes many different forms.  We have a website that has just been updated and is beautifully done.  We have many training and information opportunities.  When we visit places in the community and we host things.  Last, public education, whenever we get a chance, we talk to whoever will listen.

Ann-Marie Orlando:  So Greg, you mentioned that one of the challenges or our small staff has been consistent over the last 27 years. Can you talk little bit about how the demographics of the population that we serve has changed and how our focus might have changed a little bit too?

Greg Valcante:  Sure, like Art mentioned we work with a lot of children and school-age kids at the beginning.  And over the years for a variety of factors one being that all children grow up. Another being that people keep coming to Florida.  New people are being diagnosed as children and adults.  And folks with already having a diagnosis move to Florida.  

Things have changed to the point where nearly half and soon it will be more than half of all of our constituents are adults and not children anymore.  So, we’ve had to change our way of thinking in terms of how do we help these folks who have less services available to them than children who at least of school services available to them.  And that’s been a great challenge to us. 

We have, you know, presents at adult clinics.  We have adult support groups.  We have boot camp for employment.  We have many things going on.  But, it all comes from the fact that children grow up and that we from the beginning agreed to have a long-term relationship with our constituents not just a short-term relationship not just a evaluate you, here are some recommendations, goodbye, nice to know you.  We have been here for 27 years.  So people that we knew when they were toddlers are adults now.  People who we helped out in kindergarten are adults now.  People that we know we've known and seen them grow up from children to adults.  And so that is our hope that we will have this long-term relationship and be able to support people across the lifespan because autism is a lifetime condition.  

Ann-Marie Orlando: Today is February third. It’s Monday.  Tomorrow will be Tuesday,February 4th and that is the day.  It’s CARD Day at the capitol.  So tell us a little bit about that day and what we are hoping to achieve with that time there.

Greg Valcante:  Awareness.  We are hoping to achieve awareness of our needs and the needs of the folks that we work with and to you know have that awareness be at a broad state wide level that our are citizens, our elected representatives, our governing officers ,all to serve us through the legislature and through our government are aware of the needs of the CARD centers and constituents that we serve.  We know that tomorrow at the capitol there will be children, parents, adults with autism, adults with other disabilities, and CARD staff members there.  We will be meeting with several legislators and making them aware of all the good things that we've done. Thanking them for their support in previous years and asking them to continue supporting CARD and helping us to be able to reach more people and to serve more of the folks who are underserved in our communities. 

Ann-Marie Orlando:  That’s great.  Thank you both so much for joining us today.  

This has been a UF CARDCast.  Please visit us next time when we will interview on of our constituents and their family to talk about how CARD has help them and how they have utilized our services.  I'm your host for today's episode, Ann-Marie Orlando.  See you next time.