Arthur Wallen: All right, first I would just like to thank you so much for agreeing to have a chat today and your person who I so enjoyed through the years to be friends and be a professional colleague with John: To appreciate that very much. And I've got a world of respect for you. And we've got a real memories working together. I know that. Arthur Wallen: Exactly. But, you know, first I'd like to just start today by having a described some, some of the work that you did to make the lives of all kinds of people disabilities better John: Well, um, that's a long evolving story but I stumbled in to a job working with people with disabilities in I was actually trying to be in English high school teacher. But there was, there were no openings at the time and I needed a job. In the meantime, and I saw this advertised for a new agency, the arc of Putnam County that was going to begin offering services in the community that was like in I apply and got hired and found that they at that point had a little day service program did arts and crafts projects and some work some pain work activities we call the place of workshop Serve people And about half of those had been residents in Putnam County because but they had no services prior and had been living and family homes. And the other half came from what was then called the sunland Training Center. It's now talk to Charlie and it was part of an overall effort and called the D institutionalization effort. And the idea was to the problems in the institutions. Were becoming more and more apparent. And it was an attempt to establish programs in communities. And hopefully, in most cases, in whatever possible communities that the individual with a disability had originally come from. So the Arc was then Beginning to offer services in a day service under the direction of Jim Whitaker, who was the first executive director And The intent was to also open residential services. So the next couple years. Arthur Wallen: Now it's just going to say, you know, I do remember those years. Um, and, you know, I, I was at the sunland center in as a as a college student, helping teach a precision teaching class with Henry Penny packer. John: Okay. All right. Yeah, you do go back a long way. Don't you Anyway, in the years of follow we developed A group home first for men. I mean, for women and women resided there and and my memory. About two thirds came from the institution came from. what was then called Sutherland, and the rest lived here but needed a residential placement here. There were women in a home three and four to a bedroom. It was quite different than homes now. And then Right then we open one was really kind of innovative for the day and it still exists. And it was a residential facility that was actually different efficiency apartment units. And individuals formerly from the institution or formerly from other residential facilities would move there and it was intended to be like a step toward living independently or with supported living Arthur Wallen: Yeah, what you what you were those apartments. Some put in place. John: I can't remember exactly, but I can tell you that by they were there. So then there's one our third residential facility. And it was quite innovative for the time now. They were efficiency apartments and we had two people in each department. In later years, that would be those would become single apartments, but Arthur Wallen: Now, is it true that these were all residential residences that were owned by the ARC John: Yes, yes. It was very similar to a residential facility, except instead of bedrooms people had their own private units. But, but they still serve congregate meals at times, although people have the option of eating in their apartment. If they chose, you know, but it was um it was structured very similar to the residential facility, except with much more private Arthur Wallen: Hold on one second. John: I'm Ready to go. Yes. By or at least I should say in that's last apartment complex was pretty, pretty much a radical idea. The unit apartment complex that I just mentioned. And in fact, we were kind of a out front ahead of most community services, largely due to the Very aggressive young Executive Director really wanted to expand services. Arthur Wallen: Now I remember now. I remember that time because I was institutionalized. I was, I was a psychologist at sunland at that time in and I did my best to get people out of that place. John: Right. Well, we were very actively involved with that. Much of my work was identifying people at sunland later talk a jolly That one a community placement that we thought we could serve, but we were we were in the infancy of providing services at that point. We weren't serving anybody with severe physical disabilities and dependent on wheelchairs and we weren't serving people with significant behavior challenges and that's what happened in Our executive director asked me to get certified as behavior analysis so that we could open the first residential facility in our district District three. There's a state districts Right that served Individuals with identified significant behavior challenges. Arthur Wallen: Now I remember, I remember when that there was a group home with eight men and women that had significant challenges. John: Well, your little hand because the first one was just, it was a six bad home and an existing home. Okay. And we did get some very challenging behaviors, but from the institution and a couple from here and polite in the Putnam County area. And even though I was certified as a behavior analyst as what's required, you know, under the requirements at that time, which Were pretty lacks I actually remember. I don't know. Arthur Wallen: Yeah, but I was wonder if you maybe talk about that for a moment, you know that you know at that time being certified was, you know, was new and, you know, and really it was inspired by protecting the rights of the people on the going the behavioral treatments. John: Correct, correct. And the institution had gone much farther into using behavior analysis in their work than any other community placements and remember these community platelets are relatively new at this point. So this was an attempt to start serving some of the more challenging folks to serve and I was either. Second, I think I was the first individual in community services to be certified as the behavior analysis under the rules then so so I really feel like the agency was kind of out front. And We're still interested in even even expanding more. So we had that little six bed facility in an existing calm, those were rough days and we had We didn't have the systems in place and we were learning ourselves and I just remember this, a lot of nights Spent overnight, trying to keep people safe. Arthur Wallen: Well, can you tell me, well, you know, can you talk a little bit about what you had to do to To to make those homes acceptable to the communities that they were in John: Well, it's a little bit of a different story because we thought some of those ball battles with the earlier homes. Are we open a men's group home and promote a Park, Florida, and there was huge resistance down there, but We actually won the day in that in that with a group of i right people here because one of the people who's going to serve. Was a brain, a man with brain injuries that was Dearly beloved and promote the park area down there and when they found out we were going to serve him they were all all for it. So, We did have some challenges at different points not particularly at this point, I'm not sure why there wasn't in that first of all home but then We decided to expand and there was, I think it was with HUD money. We built a home brand new to a bet on this one individual bedrooms. For each of the residents with a shared kitchen and dining room and patio and living room here separate living room mirrors overcome. But our plan then was to use half of that for the six guys that we were serving with behavior challenges and the other half for six people that we are going to find that had severe physical challenges right and we're going to operate them as two separate homes because the layout was such as to accommodate that. It wasn't terribly successful was to crowd out of the home. Arthur Wallen: Too many people John: Especially for the folks that were using wheelchairs and most everybody on the one side was using wheelchairs. Arthur Wallen: I think John: Always weren't wide enough the open spaces went wide enough and there was a spillover sometimes the folks with behavior challenges impacted the lives of the people next door. There were a lot of reasons that it didn't. Arthur Wallen: That that had to be hard. John: It was I'm sorry mistake in the beginning, but I'm telling you, we were learning, too. Soon after that we build a brand new home for folks with disabilities that I mean with physical disabilities that was designed for that population with much larger spaces and larger bedrooms and that homes in existence still here. You know, it had all it had lowered windowsills lowered lights which is everything to accommodate disability. Arthur Wallen: But that was the. That was the time when you know environmental combinations with just coming, you know, we're just coming online. John: Any Community Services almost non existent. Again, we're a little bit ahead of the curve. Arthur Wallen: Yes. John: You're not putting these homes and blacker and again I give the credit to Jim worker who really Pete. In fact, he just retired from here, about two and a half years ago and he was here when I got here in so yeah we had a long stable leadership of our platinum. So that's when we have built a bigger home and we weren't started learning those lessons. I'm not real sure we were there for Just a couple of years before the new home for the folks with physical disabilities was opened, but we also expand it. We filled those other bands with other folks with challenging behaviors. That, too, was difficult individuals in one home, even though the floor plans allowed and we treated, largely as two separate six homes. Arthur Wallen: So I wonder if you could talk a little bit about you know those all those lessons learned and then you know they're there came a time when If you, if you would just share a little bit of the story of where I know some of the people that lived in purple in Putnam County that had autism and other developmental disabilities, you help them purchase homes. John: Yes, yes. I want to finish one thought on this, and then I'm going to switch over that because that's something we're really proud of. Yes, this is part of the lessons learned that you challenge me with moments ago, the Once we had the large bed home that serve. We call it the Community Living Center, and it was serving now individuals who had challenging behaviors. Some of these that had failed placements elsewhere. In some cases the institution but There was a flood of new money Medicaid money that came into play just about somewhere in those years. And again, we put in for that. And we had a really good running record with the State Development Services office and they were anxious to for us to open more and we built for small group homes For these into these individuals. And I think a couple more people came on board to and arms only serve for individuals and two of the homes serve three individuals. Arthur Wallen: Okay. John: This is this flood of money that that kind of things hard to pull off now. And in today's Arthur Wallen: That's exactly right. John: But we were striking while the iron is hot, so to speak, and here's what, here's a lesson learn Putting people with disabilities. And this population with severe behavior challenges into small homes. That looks so much more like a home where individual preferences could be so much more individualized where people could work on their own challenging behaviors without all the impact of all these other people's challenging behaviors. Arthur Wallen: affecting them. John: Your progress moving people with challenging behaviors into more homelike circumstances in itself work wonders. We saw immediate and in most cases it's not universal, but in almost every case people's behaviors modified changed. And I just think it, it just points to the fact that One of the key. One of the key things to approach behavior challenges is to give people an opportunity for Normalize that living conditions. Arthur Wallen: And what do you think about individualized choice. John: Well actually would like to expand on that little bit too. But certainly we couldn't accommodate individual choice so much better in those small homes people access the community so much more easily. You don't PAC people into a van to go somewhere. It just became so much more relaxed. Arthur Wallen: And I imagine the staff probably loved You know, be working. There's a nice a nice setting. John: They did. They did. We got a little resistance in one of the neighborhoods that we went into we went into the just the nicest neighborhoods. But even that evaporated in short order. Arthur Wallen: But I also remember you had stable, long term folks working for the Putnam a RC. John: We did, we did Arthur Wallen: People in really liked working there. John: I think they did. I'm, I'm proud of the fact that we were able to have such a So much stability here. A lot of that goes back to the very unusual circumstances of having one executive director from years from the day of your birth until Last year, you know, it's, it's amazing. And we certainly benefited from that. But you mentioned choice when you say I've got some of the things I want to get out and I just wanted to kind of get them in as early as I could. Um, yes. I wanted to say this. Share a little thought experiment that was shared with me. My pharmacist at sunland was now let's now talk Italian his name Cedric Bates and I just happened to be in a training, where he was talking about psychotropic medications. These are medications that are given to people that sometimes used to be used even more extensively now and the medications were much cooler, but to help control of individuals behaviors and he was talking to us about those medications, but he he gave us a little thought experiment. Maybe individuals that may hear this podcast might want to go along with it for just a minute. He asked ask everybody present to just imagine in their own mind. The kinds of situations in their life that they are the most comfortable with. So if you take a minute and just do that just roughly, you don't want to share it with any money. And then he asked us to think about the kinds of situations that we face in our life, where were the most uncomfortable uncomfortable. And to take a second to think about that. He then followed with this. He says, not knowing what situations that you had in mind. He says, I'll bet you that the ones where you're the most comfortable are the ones where you feel the most in control. It works for me. And then he said, and I bet the situation where you the least comfortable are the ones where you feel the least control. And again, that works for me in my mind, and it seemed to for a lot of the folks that were there. Mm hmm. Well, I think the board to be taken away from that is that we are happiest. We are our best selves. When we're in Places that we feel like we're in control. And when you apply that to the people that we serve in residential facilities, how much real control over their life. Do they have right They eat at an assigned time right Do they have control over their private time and who they who they visit and having the private quarters of their rooms. Arthur Wallen: I the daily activities. John: Are good, right. How much control over their daily activities or how much of is getting up a prescribed time Sitting down at a prescribed time at the table, getting your manager prescribed time on a bus to prescribe time going to an active, you got the point That's that's the epitome of a life out of control out of something. Right. And I think that has implications for all of us, not even even people that are for all of us as individuals, not just with disabilities but For families that have folks with disabilities that live in their home. How much control over their life, do they have in that setting. Sometimes behavior. Sometimes always behaviors, you know, this is just a form of communication right and I think it's a good idea to try to read that communication is I have no control. Now, So anyway, they always stuck with me, I always thought that was coming to Arthur Wallen: You. Thank you. John: Yeah, well thank thank central banks. Arthur Wallen: Bates. And I also think that You know there were people like that. That you know fully grasp. You know the You know who had the empathy and compassion. To really understand the lives of the people that that surrounded them. John: Yes, yes. I think he exemplified that and I certainly wanted to myself. Arthur Wallen: Mm hmm. Absolutely. Now, you know, just, you know, looking back I just wonder if you could maybe just talk about You know some of the success, a success that you were most happy with something That you you know that you worked hard and you know there was an outcome that was fantastic for the people. That took advantage of it. John: Well, what comes to mind and something that you mentioned earlier, because you're I guess anybody that's listening to this can tell that you were very familiar with what we were doing over here at the time and you Just tell the listeners that you were here all the time in a support role and you are a consultant for us helping us, especially in the area of certain folks with autism in recognizing better ways that we can serve that population and it was always greatly appreciated guard, but One of the things I wanted to mention that I'm really proud of and you touched on was homeownership and I can't do this without recognizing my colleague at the time, Sherry risky. John: Sherry is a wonderful advocate and she now executive director of New York and Bradford County, but at the time she was having our Supported living services, just a quick digression. If you're not familiar with supported living especially disabilities that live in their own dwellings, whether it's an apartment or home or whatever the situation roommate or not. And service provider provide supported within coach that helps them to live as independently as possible. John: They may come in and help with some housekeeping or transportation to doctor's appointments or budgeting, or any of those things where the individual may need help, and at that time we had one of the largest probably the largest supported living Program in the district. And I, gosh, I wish I could But it was in the early s. But Sherry's spearheaded this, but by putting together a package of cooperating housing assistance agencies, she was able to secure funding that allow folks with individuals to buy houses of their own and pay a subsidized mortgage or reduced mortgage Toward owning our own home completely and we actually at the peak had individuals Living in different homes that I own. Arthur Wallen: That was amazing. At those Shows amazing at those times. John: A number. So I'm just still there are some have been sold to other people with Number, though some still have folks with Disabilities living in there. We have married couples and other living arrangements. Sometimes it's roommates. Sometimes it's individuals, but we're really proud of that. And as part of the project of the de excuse me developmental disabilities council in Tallahassee asked us, they find it a project that we developed a curriculum. To help people prepare for homeownership that is available. It's called a home of home of our own and it's available at least last year there were still copies there from the developmental disabilities Council. I see it. I'm assuming it's still called that the development disabilities Council. Arthur Wallen: It is cdc.org John: It's called a home of our own and it's available for free from their last name. And we also did a kind of tour of part of the state. I think we made six different stops. Mostly these words small rural counties where we went and talked to them about how we developed homeownership for those individuals that we reserve. So it was great project and we're real proud of that. And the benefit from it still exists today. All these years later, so that's Arthur Wallen: That is that that is awesome. And I can recall With you, you, you took me to a few of those homes and it was it was fantastic. John: There's like a Arthur Wallen: Real thriving thriving as community members and just living their lives in you know, as you say, with control and you know they were they, they were thriving. Right. John: Now that's very gratifying. Yes. What I was proud of that. And I wanted to mention this to and again I had trouble pinning down the date. So you may be able to get better. At that than me. I'm in, you know, I mentioned we have that money when we build a small homes without money dried up. And if there are reasonable complaints about services in the state of Florida, and I'm sure there are. It's been a lack of consistency over the years, it was not enough money to sustain a new rate structure would not allow us to sustain those homes. So they began closing two of them closed and the other two have now had been expanded and now sir six individuals. Okay, so that's changed somewhat, but the budget cuts that led to some of that. Best I can and I was in the summer in the first decade of the s. The state toted starting to take some very aggressive measures to reduce costs in the program. Right, and it's probably fair enough. And it was said at the time, if there had been a lack of accountability about where the money was going and what was coming from it. So there was an effort to tighten things up, but also to reduce Rates and you did that by reducing what was calling a cost plan each individual they may still do it this way by been out a few years. Everybody has their own cost plan. And that cost plan is based on a number of factors, including oh maybe history and behavioral challenges or physical needs or So, somebody may have a very large budgets in mind may have a much smaller one with that individual cosplay and that cost plan was used to purchase all of their services. Well, the state decided that they're going to try to reduce those costs plans. And they were reducing them my memory to meet a budget goal. And the cuts was draconian for some people it would mean, in some cases, it meant that individuals that may live in a residential facility and make a day program during the daytime could lose that day program and have to remain in the facility around the clock. In other cases, I don't think it ever challenged a residential placement, but it could reduce the number of supportive living coaching hours that came into your home. Arthur Wallen: To world sounds like for some individuals that might have made it more dangerous. It could have made it much more things much more dangerous. You know, This is a bit of a sideline but data shows that abuse. Of individuals with disabilities goes down, the more contacts those individuals have with other services and other people So removing services and isolate people exacerbates all the things that are bad. And so we decided to going to take a real aggressive Approach and We were going to ask for a hearing for every single person that had a single penny cut out other cosplay. We just wanted to make him go through the process. We wanted to make it as hard as it is, we could to make these Arthur Wallen: can justify it. John: Just There was no money. I mean, there were a few Legal Services attorneys that did take a few cases, but there was no way they could take cases of all the individuals. This was affecting thousands of individuals statewide and hundreds here well over years So we decided a challenge for all these hearings. So we did, we had, we must have had or hearings. Now, I was supported by legal services people but they usually couldn't be there right and the state was represented by Oh, I can't remember the name of law firm from Tallahassee, but they were a very prestigious law firm. They're very competent We're way over our heads, you know, So we had all these hearings and The deck was pretty much stacked against us and we we missed a lot of them, but maybe % we were able to Make a point that that stopped the reduction to the cost points right Right well What did happen was. It was such an odd number of other people did. And I don't know anybody decline as many as we did these hearings. But everyone that has to be scheduled. They have to have a hearing officer, they have to have these attorneys. It took endless amounts of time to get it done and that time proved to be invaluable. Because over that time, some of the pressure to reduce the cost plans change some of the rules about reducing the cost plans changed and They had also introduced during the all to the middle of this another plan called rebasing and rebasing meant that they were your cosplay. I was going to be cut it to where if it was lower the previous year. We're going to cut it back to what it was the previous year. Mm hmm. Well, with just a little bit of analysis, you can see how unfair. It was because, you know, for instance, if a guy got seriously ill and went to the hospital for two or three weeks, he was out of services all those time. So that's all that reduce the money he spent in this cosplay right Right, all these reasons, Usually very valid reasons that people miss services and then now they're going to reduce their services by that much. But, um, again we approached it all with hearings, we're going to go through a whole new set of hearings on this. Arthur Wallen: Oh boy. John: By the time the hearings for finished the year had passed, and the way the law was written. It had to be the Cost quite had to be based on a specific year that originally identified and it was then identified as the previous year. I'm confused. It's not easy to say, but we have delayed them so long that they had to throw out rebasing because the formatted and fit anymore. So that was a great success legal services did the. A lot of the work, but I was very Arthur Wallen: Well, the heavy lifting that you guys did a lot a bunch of the heavy lifting. John: We were really active in and pushing that it was I'm so glad that we did it so many people maintain services, even though I didn't win a lot of hearings, you know, Arthur Wallen: You know, and you said it, you know, the number of people and the number of rooms that you walk in each day is a is a buttress against Miss, miss you, you know, mistreatment and, you know, increasing the danger of a person with disabilities. John: You know, tying it in with, you know, this is happening at the end of June. we're tying into the current pandemic. There's a lot of fear about child abuse and those things. Now that everybody's isolated, you know, So yes, that was, those were things that stand out for me that I was very proud of the that advocacy during those terrible budget cut years Arthur Wallen: John Arthur Wallen: This has been awesome. So I want to thank you so much for taking the time. John: Art John: Opportunity. I really do. Arthur Wallen: This has been great. Arthur Wallen: And, you know, I'm gonna have to invite you back because you are a wealth of knowledge with respect to both, you know, treatment of individuals that have disabilities as well as housing and many of things. So thank you again for doing this. John: Well, thank you for all your work over the years, aren't there were a lot of times I leaned on yourself. I'm certainly thankful for all of that and thankful for our friendship to Arthur Wallen: Signing off. John: Thank you. Arthur Wallen: All right.