WEBVTT 00:02:30.000 --> 00:02:38.000 I can follow up with you by email after the fact. And last but definitely not least. Let us know who you are. 00:02:38.000 --> 00:02:48.000 We want to see who our community is on this session. So give us your name, your affiliation a little bit about yourself in the chat while we get started. 00:02:48.000 --> 00:02:54.000 Okay, and so with that, let me. Get our slides situated. 00:02:54.000 --> 00:02:56.000 Today we're talking about measurement and function. And again, just to review the first 5 sessions of the series are meant to be general. 00:02:56.000 --> 00:03:06.000 By design, getting us acclimated to this topic and then this series will not go away after these 5 sessions. 00:03:06.000 --> 00:03:25.000 We're gonna dig deeper into those if you have any ideas thoughts about conversations that must take place in this area please send us those the planning committee would value that greatly. 00:03:25.000 --> 00:03:35.000 All right, briefly today related to measurement and functioning. We're going to describe an illustrate how intellectual and our developmental disability is measured. 00:03:35.000 --> 00:03:43.000 Compare and analyze the different ways it's measured. And we're also going to talk about the potential pitfalls as well as strengths that we cannot. 00:03:43.000 --> 00:03:51.000 Ignore should not ignore in this whole measurement and functioning process. 00:03:51.000 --> 00:04:08.000 So with that, I'm excited to introduce Dr. David Klaiman. He's a clinical forensic psychologist, has a great level of experience in both the forensic side and the clinical side obviously. 00:04:08.000 --> 00:04:13.000 Currently Chair of Dangerous Assessment Advisory Board and Multidisciplinary Diversion Study Group. 00:04:13.000 --> 00:04:21.000 He's also going to share. We're going to dip into some policy today with some exciting policy efforts that are going on in West Virginia. 00:04:21.000 --> 00:04:26.000 With that, Dr. Clement, I'm gonna turn it over to you. 00:04:26.000 --> 00:04:33.000 Good morning. I'm if I start coughing, I just had spicy soup and I never know how it's going to start with me coughing. 00:04:33.000 --> 00:04:38.000 When, we started talking one of the things I just want to let you know is that I feel super fortunate. 00:04:38.000 --> 00:04:45.000 The reason why we on the intro I had the the dab which we call the dangerous and this assessment advisory board. 00:04:45.000 --> 00:04:49.000 From that evolved last year. Senate Bill 2 32. Which was the requiring us with a participant. 00:04:49.000 --> 00:05:03.000 This is how we got together with Leslie and some other people. At least 18 mandated participants to discuss. 00:05:03.000 --> 00:05:16.000 Diversion of 4 at risk populations. From the adjudicatory system and even How do we deal with them in and out of the mental health system like Sharp and the other hospitals? 00:05:16.000 --> 00:05:26.000 And. Luckily for me, I fell into echo. And a couple other community based. 00:05:26.000 --> 00:05:36.000 Undertakings and ID became probably because of my folio who was with West Virginia disability rights with Bob Hanson I guess who was on last time. 00:05:36.000 --> 00:05:46.000 They've really taken this, the IDD issue. In its larger proportion. I'm talking because my job as the chair of these committees is from the forensic side. 00:05:46.000 --> 00:05:53.000 We'll kind of be touching on that how it's a little bit different than the clinical as we go through. 00:05:53.000 --> 00:05:57.000 But when I started looking at ADD years ago, The first thing that came up to my mind was autism. 00:05:57.000 --> 00:06:05.000 Well, autism spec was an autism spectrum because we had back then we still had Asperger's, which kind of was a separate. 00:06:05.000 --> 00:06:17.000 Consideration. And now both between the. Nih has offered us other kinds of things that we should be looking at and they're listed. 00:06:17.000 --> 00:06:25.000 All of which may relate in either cognitive and or developmental and or social kinds of setbacks for people. 00:06:25.000 --> 00:06:34.000 So it's not just autism spectrum and I actually did a survey. With people, and I think it was 80% said autism. 00:06:34.000 --> 00:06:44.000 Not none of them mentioned any of the others the ripple palsy downs I mean, and in technicalities, they are IDD. 00:06:44.000 --> 00:06:55.000 And they could be awarded. Benefits if they met certain criteria My other thing is that I did thousands and that's not even an exaggeration of and watch me cringe. 00:06:55.000 --> 00:07:03.000 Social Security disability appeals. Cases where IDD is that's where my real first exposure came to IDD. 00:07:03.000 --> 00:07:09.000 I am not a clinical specialist and I'm more of a policy person and I've used these. 00:07:09.000 --> 00:07:22.000 My knowledge now because I do forensics and criminal responsibility, which we'll talk a little bit about because some of our folks who are on the spectrum and with other things do actually behave that in ways that they get in touch with the law. 00:07:22.000 --> 00:07:23.000 So that's kind of just an overview so that we're not always just talking about autism spectrum. 00:07:23.000 --> 00:07:35.000 There can be a lot of other things. So that's the first time. Technically. 00:07:35.000 --> 00:07:40.000 This disabled. So we're gonna have Leslie clicking this. I hate doing this to her. 00:07:40.000 --> 00:07:50.000 But next slide, please. I've never done that. That's so fun. These are things that We have taken from the AI DD. 00:07:50.000 --> 00:08:11.000 Site and a couple things here that I think are really critical in the. The way I used to look at IDD was that it had to be something that happened really, really early in life and There's some stretching now as far as from the clinical standpoint that they can rejuvenate before 22. 00:08:11.000 --> 00:08:20.000 The NIH standards talk about it being before 18. And then most of the time what we've gotten used to and I think most of you are and you're all much more smart, much more smart. 00:08:20.000 --> 00:08:28.000 You're smarter about this than I. But we get kids who are really young who are having trouble who cannot stay in their homes. 00:08:28.000 --> 00:08:37.000 Who as Senator Hunt last week. And the judiciary here in Cat said those little kids. We couldn't keep in the home become big kids so we can't keep in home. 00:08:37.000 --> 00:08:41.000 Now what do we do with them? So we're talking about From your all standpoint, a life long issue. 00:08:41.000 --> 00:08:44.000 I mean. 00:08:44.000 --> 00:08:58.000 From from my perspective it is fairly truncated into what do we do with people that behave in a manner that bring them the attention of the law or such that they find it difficult to maintain them in the homes. 00:08:58.000 --> 00:09:11.000 In a home setting or, a less restrictive alternative setting. Couple of other things that we look at as we look at I think the 3 things this is not just your IQ IQ is a score that is. 00:09:11.000 --> 00:09:20.000 Very valuable in certain things. For me as a clinician. Somebody could have an IQ of 70 or that can have a IQ of a hundred 40. 00:09:20.000 --> 00:09:26.000 But each of them may have deficits and they may have significant deficits based upon how much we spend time looking at sub-tests. 00:09:26.000 --> 00:09:32.000 Pearson has been working very hard to provide us with. Statistics, that's the company that makes the waste. 00:09:32.000 --> 00:09:47.000 4 and soon to be the ways 5. To talk about. How do we develop IQ scores? Upon what populations will be dealing with and they now have these subclinical scores that help us look at specific populations in comparison to other people. 00:09:47.000 --> 00:10:07.000 We use a thing called the dementia rating scale for people with. Well, with dementia, I mean, I was thinking about saying like Alzheimer's and things, but, We're scoring all of those people who are taking a dimension rating scale against all the other people who are demented. 00:10:07.000 --> 00:10:17.000 Well, we have but we have a normal population but compared to all the other people who have dementia. 00:10:17.000 --> 00:10:25.000 These, they may, may be higher functioning in the highest 10%. I. 00:10:25.000 --> 00:10:33.000 I think the 70 75 is misleading at times because that probably won't lead to total. 00:10:33.000 --> 00:10:44.000 A declaration of disability. I think that's important from my side because when we're looking at somebody say who's competent to stand trial who has an intellectual and developmental disability who has an IQ between 70 and 75. 00:10:44.000 --> 00:10:56.000 We actually have. Scoring protocols now that we can actually assess that and that does not necessarily mean they're not capable. 00:10:56.000 --> 00:11:06.000 The next little comment. Is that we have really moved into an area where scores are not as important as the as the impact of what is going on. 00:11:06.000 --> 00:11:14.000 As a forensic psychologist. And I'm doing this so that you get the perspective, cause I'll have some fairly strong opinions. 00:11:14.000 --> 00:11:21.000 I don't care whether somebody schizophrenic has schizophrenia. I'm like saying somebody schizophrenic somebody who has schizophrenia as a diagnosis or whatever. 00:11:21.000 --> 00:11:31.000 We look at the functional ability and now in the forensic world. For those of you who have not been exposed to that a lot. 00:11:31.000 --> 00:11:40.000 Diagnosis is necessary by statute but not helpful. Often when we're doing these kind of evaluations. 00:11:40.000 --> 00:11:47.000 So I want I think that's really important. We can have an IQ score of 70 and the person may be able to do fine with their ADLs and everything else. 00:11:47.000 --> 00:12:08.000 We may have somebody who has a score of 81 but has other things going on that makes it a possible them to put information together to make adequate decisions and they are based upon not in close a psychiatric problem, but more of a combination of adaptive functioning and a whole bunch of things we'll talk about later. 00:12:08.000 --> 00:12:18.000 But just remember that thing, the idea now is as we're trained, I loved it because I Diagnosis is just such a 00:12:18.000 --> 00:12:33.000 Diversion because if all of us on this thing all of us would diagnosis having anxiety disorder I betch anything out of the 34 people here will have about 15 different ways that's manifested in itself based upon our basic personality, our every place else we're living. 00:12:33.000 --> 00:12:39.000 So that's that's kind of the functional out of defining the criteria for the next slide. 00:12:39.000 --> 00:12:51.000 It brings up all the other kinds of things that we should be taking a look at. And I'm not going to read the slides, but I think these are things that you all know by dealing with the population. 00:12:51.000 --> 00:13:02.000 I am most interested in being able to take a look at each one of the levels. For instance, If we try to. 00:13:02.000 --> 00:13:14.000 Administer something like the WASE, the Wexel intelligence scale. Problem is, is can the people actually take the waste and is the measurement we're getting because they don't understand they can't process or because they actually last lack the ability. 00:13:14.000 --> 00:13:22.000 That's the clinician's responsibility to know that. And how many of these kinds of things, whether it's. 00:13:22.000 --> 00:13:27.000 Any of these are relevant to the issues at hand such as independent living, gaining abilities, moving out of their homes. 00:13:27.000 --> 00:13:42.000 Those kind of things. As we have to link. Each one of these concepts and this is what I try to do is how do we measure interpersonal skills ability to follow rules. 00:13:42.000 --> 00:13:52.000 And laws. And, you know, very often. The victimization is not. The kind of thing we think about people being victims of assault. 00:13:52.000 --> 00:14:03.000 The victimization is And we all know this and this is why I haven't so interested is where to folks with IDD issues end up if they act out. 00:14:03.000 --> 00:14:17.000 As a result, we're gonna talk a couple of minutes about. The acting out. But we here across the state and I suspect all of you will be able to hear I see some of the disability rights folks a year, they end up in jail. 00:14:17.000 --> 00:14:22.000 They end up being transported because they've been misbehaved. They've acted out. 00:14:22.000 --> 00:14:30.000 They've scared someone. Ems. Maybe called what do we do with them? Well, we'd like to be able to put them someplace safe. 00:14:30.000 --> 00:14:37.000 And have them be de-escalated and taken care of. But because they've done a behavior that scared somebody, they end up. 00:14:37.000 --> 00:14:43.000 Being sent to the local regional jail or Maybe put in front of a mental hygiene commissioner who then says we don't have any place to put them anyway. 00:14:43.000 --> 00:14:54.000 The bottom line when we talk about standardized tests. We have IQ, we have all of you know this better than I probably for who do the evaluations. 00:14:54.000 --> 00:15:00.000 We have that, we have achievement tests. And again, an achievement test when how can somebody read? 00:15:00.000 --> 00:15:13.000 Maybe they can read it a eleventh grade level. The interesting thing is we when we do reading recognition. We're gonna get something that says, hey, they can do this at eleventh grade level when they do reading comprehension. 00:15:13.000 --> 00:15:18.000 They're at kindergarten level. That sounds like an oxymoron, but people can read. 00:15:18.000 --> 00:15:27.000 But they may not understand. And we're always faced with that process, whether it's under the guidelines from Social Security for disability or whether it's from other kind of things. 00:15:27.000 --> 00:15:36.000 Next slide. I know I'm going really quickly on this, but we got an hour. These are the other kind of things that why we're all here. 00:15:36.000 --> 00:15:43.000 When I fell, fell into the echo group. I'm a stranger in a strange land. 00:15:43.000 --> 00:15:48.000 I am willing to admit that. I've become less of a stranger. I'm willing to admit that. 00:15:48.000 --> 00:15:51.000 I've become less of a stranger. I'm attending 2 more seminars on autism in the next 2 months. 00:15:51.000 --> 00:16:00.000 As they integrate with the criminal justice system. But we have problems. We have a society that says, let's take care of people, but we have a society that says, how are we gonna do it? 00:16:00.000 --> 00:16:08.000 Cause we don't have a lot of money. In West Virginia is particularly difficult because our population density issues. 00:16:08.000 --> 00:16:15.000 Cause us problems. Where would we put a step down facility? We can't put one in every single community in the state. 00:16:15.000 --> 00:16:27.000 Would be lovely if we had. Starlight having facilities in 1520 30 places where we could put in a hundred people We don't have good numbers yet and I don't have the numbers. 00:16:27.000 --> 00:16:34.000 This may be something that. You all can provide me is how many people do we estimate have actually an IDD issue. 00:16:34.000 --> 00:16:50.000 In their lives. And then the next step for me that is interesting in which I'd like to hear feedback is how many, what percentage of those people end up going from being identified as IDD being in training programs being in alternate places who actually have interactions with adjudicatory system. 00:16:50.000 --> 00:16:57.000 And you know, that kind of numbers. Something we hope to get once our bills renewed this year. 00:16:57.000 --> 00:17:02.000 The other things that we've talked about is. 00:17:02.000 --> 00:17:07.000 Just language, the ability for people to understand what we're saying. I always laugh when I start. 00:17:07.000 --> 00:17:09.000 As you can see, I can't speak very quickly. And I'm from Boston originally. 00:17:09.000 --> 00:17:19.000 I do say things that sound when I go to Boston, they think I have a divisibility because I say the S word with 2 syllables. 00:17:19.000 --> 00:17:27.000 And I don't say the things that they say. And my cultural changes are there and we sometimes misunderstand each other. 00:17:27.000 --> 00:17:34.000 The The interesting thing in Leslie and I, we're going over the slides. 00:17:34.000 --> 00:17:39.000 Limitations office co is this with strengths in a person. And I like to start the other way. 00:17:39.000 --> 00:17:48.000 Stripes often coexist with the limitations in a person. We don't generally get folks put to my world unless there's something going wrong. 00:17:48.000 --> 00:17:57.000 And we focus on pathology. We focus on deficits. We focus on the things that may get them benefits or may get them in a protected setting or anything else. 00:17:57.000 --> 00:18:03.000 But we forget some of the unbelievable imagination kind of things that there's somebody on here in Starlight. 00:18:03.000 --> 00:18:09.000 They're probably familiar with the Star Wars advocate that they used to have or may still have in their place. 00:18:09.000 --> 00:18:18.000 This person can name every character, every location, every other thing, but not could not last one day in the community on his own. 00:18:18.000 --> 00:18:27.000 So we take a look at. What do we do? And this is what hopefully Echo is going to be doing. 00:18:27.000 --> 00:18:32.000 But the global population and hopefully will be able to stay in touch with all of you. And as many of you would like to have input, please feel free. 00:18:32.000 --> 00:18:45.000 What do we do to divert them from the criminal justice system? What alternatives can we really come up with and how can we have Messages delivered to the legislature. 00:18:45.000 --> 00:18:54.000 We have been received very well on this initial study. First year and we're waiting now to see whether we're going to be reopped, but we're really hoping they're going to listen to us. 00:18:54.000 --> 00:19:01.000 Next slide. I love saying that. That's just so much fun. This is just going over the kind of things. 00:19:01.000 --> 00:19:10.000 When you look at the. The information from the National Institutes of Health. 00:19:10.000 --> 00:19:23.000 They they make it very clear that and I and I think the present IDs, present, usually present at birth, uniquely affect trajectory of individuals development intellectually, emotionally. 00:19:23.000 --> 00:19:33.000 And many of the conditions affect multiple body parts of systems and they go through the nervous system. Metabolism sensory system, degenerative stuff. 00:19:33.000 --> 00:19:40.000 But what it comes down to is that We have a wide array of symptoms and we're going to talk about. 00:19:40.000 --> 00:19:47.000 How this is confused but First, the conditions of development. We now know that there is onset later. 00:19:47.000 --> 00:19:54.000 I'm not sure that, and I haven't looked at the laws, we may identify somebody at the age of 18 or 22. 00:19:54.000 --> 00:20:03.000 But I'm fairly sure we have to show that that pattern has been existing. for quite a while. 00:20:03.000 --> 00:20:11.000 I just see somebody putting something about the, new draft manual CMS. God bless the MS for telling us how we're supposed to look at the world every 15 years. 00:20:11.000 --> 00:20:18.000 But. We're looking at the day to day functioning. 00:20:18.000 --> 00:20:25.000 I have some friends who have a folks who are. 00:20:25.000 --> 00:20:35.000 Experiencing DD and they're the most lovable human beings until they're 18 years old or until for males until puberty hits and then something strange occurs. 00:20:35.000 --> 00:20:53.000 We have group data. This is a big deal. And then we have to take a look at on the standardized test what's going on and the criteria clearly is substantially below that expected for the child's age intelligence and education. 00:20:53.000 --> 00:20:59.000 But we have to add in. And this is really critical. West Virginia, the differences. Across. 00:20:59.000 --> 00:21:07.000 All of our different communities. The value that's placed on education, the access to care. 00:21:07.000 --> 00:21:09.000 I was on the. 00:21:09.000 --> 00:21:20.000 I can't remember APS advisory, professional advisory board. We had a professional and, and a, consumer. 00:21:20.000 --> 00:21:29.000 Groups and the fascination I had is that there were so many differences in access to care. Transportation, one of the things that we came up with. 00:21:29.000 --> 00:21:36.000 This is years ago and this is appropriate to hear, we asked what. The professional group asked the consumer group, what do you think we needed? 00:21:36.000 --> 00:21:44.000 And the 2 things they said and I'm not meaning to be offensive to any of the mental health centers, but I usually within an hour can offend at least 5 people out of 30. 00:21:44.000 --> 00:21:48.000 We asked them what they wanted. They said we'd like to have daytime hours so that we don't have to leave our jobs. 00:21:48.000 --> 00:21:56.000 Or take our kids out of school. And we like to have transportation. And when the communities were disbanded, neither of those. 00:21:56.000 --> 00:22:13.000 Changes were put into place, which impact day-to-day functioning, access to care, what is the level of education to the parents, how do they understand what we're telling them for rehab? 00:22:13.000 --> 00:22:18.000 And all that kind of stuff. So these are all issues that I think are every single day for us a real critical. 00:22:18.000 --> 00:22:26.000 An often moving target. Next slide, please. 00:22:26.000 --> 00:22:42.000 And, and this is, this is a. Kind of goes back to the other conditions, but I think that that when we're dealing I suspect there for my from my naive standpoint, there are lots and lots of people in the community that have. 00:22:42.000 --> 00:22:53.000 Components of or fully blown IDD patterns. That we never have trouble, we never see. Somehow they have the familial or the community or whoever that are taking care of them. 00:22:53.000 --> 00:23:00.000 But when do we get them? And take a look at each one of these. With the autism spectrum. 00:23:00.000 --> 00:23:08.000 There are a lot of folks who have. Autism spectrum issues who never come to our attention. They're their their docile. 00:23:08.000 --> 00:23:09.000 As they develop, they don't develop the hypersensitivity to certain kinds of things. 00:23:09.000 --> 00:23:15.000 They, they find a way and their family finds a way and they do well. Same with down, same with fetal alcohol. 00:23:15.000 --> 00:23:27.000 In some cases. Which I think is more difficult than a lot of things. But each one of these, this is really funny. 00:23:27.000 --> 00:23:37.000 I usually talk with my hands on Try not to here. Each one of these on here. Under autism spectrum, the ADD, every one of them. 00:23:37.000 --> 00:23:46.000 Causes some kind of discomfort in the people around them. And these co-occurring. Disorders, depression and anxiety primarily usually the mental health realm. 00:23:46.000 --> 00:23:55.000 They say, say, say psychiatry. I say psychiatry, psychology, social work. For those of us who work in clinical mental health settings. 00:23:55.000 --> 00:24:03.000 Add is specific, but. How do you deal with a ADD child? I have a niece and she'll kill me if she knows I'm saying this. 00:24:03.000 --> 00:24:12.000 Who's now a second grade teacher who's wonderful and bright. And lovely and tremendous. But boy, she wasn't that way when she's 3, 4 and 5 years old. 00:24:12.000 --> 00:24:21.000 You know, we wish we had a Set of nets around the house sometimes because she she was ADHD and She made it through school. 00:24:21.000 --> 00:24:26.000 She's doing wonderfully, but she came to the attention as teachers because she couldn't sit still. 00:24:26.000 --> 00:24:33.000 She was mouthy, which she still is. I love her to death. But she sometimes difficult and because she's difficult. 00:24:33.000 --> 00:24:45.000 As parents get older or. The community changes, they come to the attention of someone. With impulse control issues as well as the affective and behavioral changes associated with depression and anxiety. 00:24:45.000 --> 00:24:50.000 We have overlap. We have co-occurring. 00:24:50.000 --> 00:25:06.000 But for me watching what has happened in my 50 years of doing this when autism was like a paragraph in our diagnostic world back then and and you never wanted to say that it was almost as bad as using some of the more severe mentally illness things. 00:25:06.000 --> 00:25:15.000 We treat behaviors. And autism spectrum disorder, yes, we know for instance. That there are changes in the brain. 00:25:15.000 --> 00:25:21.000 No changes in development and changes. Changes in this person's 00:25:21.000 --> 00:25:38.000 Internal suffer, the biological side. But we are we have in the past often. Diagnose someone and if some of you may not be old enough to have known this but When somebody would come in with autism in the olden days, I'm talking the seventys and eighties, they would not ever be called autistic. 00:25:38.000 --> 00:25:41.000 That was terrible. They'd have ADD, they'd have depression, they'd have anxiety. 00:25:41.000 --> 00:25:50.000 And guess what they got treated for? They got treated for each one of those clinical entities, not for the collection of problems. 00:25:50.000 --> 00:25:57.000 That was resulting in them. Being able to be defined as being on the spectrum. The hypersensitivity. 00:25:57.000 --> 00:26:07.000 The All the things that we now know and and if they were sad. Maybe if they were higher functioning maybe up in the Asperger's level, they would be really sad. 00:26:07.000 --> 00:26:12.000 And so they were given an antidepressant. But there were a lot of other issues that we had to deal with. 00:26:12.000 --> 00:26:30.000 Other than this, and so we're looking at these. Entities, the ones that I mentioned earlier and the behaviors are going with them and we have and we'll talk about the the overlap between the 2, but these are the kinds of things that we see and you know if you if you have a somebody on the spectrum who is. 00:26:30.000 --> 00:26:43.000 More has a lot of the ADHD kind of things. What gets treated? The ASD part gets pushed aside and everybody goes targeting that and when you go to you see the clinical notes. 00:26:43.000 --> 00:26:48.000 They're focusing on that behavior and as a forensics person who does damages who's worked with Barbersville. 00:26:48.000 --> 00:27:01.000 We, I've worked a lot with Rescue. As soon as they can pick a focus that they might medicate, that becomes the focus and although it might be like having a personality disorder and an adult. 00:27:01.000 --> 00:27:10.000 We start treating the the symptoms. And we forget how complex the situation has to be. Next, please. 00:27:10.000 --> 00:27:19.000 This is the diagnostic overshadowing. To be either way, We who look at the functional abilities people tend to. 00:27:19.000 --> 00:27:25.000 Want to kind of discount it being a psychiatric disorder and I hate that term. But I, we have to use it. 00:27:25.000 --> 00:27:37.000 That And when you see this thing, We can minimize. The idea that there may be something else going on by saying, oh, it's just an intellectual disorder. 00:27:37.000 --> 00:27:47.000 Oh, it's just that they have a developmental disability. Oh, and that's one side. 00:27:47.000 --> 00:27:54.000 And then the other side is, oh, we got to come up with a diagnosis. So we bring them to the mental health center. 00:27:54.000 --> 00:28:01.000 We bring them to some place. And that's another issue in itself. And. 00:28:01.000 --> 00:28:08.000 We. Go through. 00:28:08.000 --> 00:28:11.000 The battle between 00:28:11.000 --> 00:28:18.000 Not even a battle. The failure to to Connect everybody. 00:28:18.000 --> 00:28:27.000 With the individuals unique. Set of problems and try to work together. And this is the part that's so difficult. 00:28:27.000 --> 00:28:37.000 Trying to work together from all different perspectives, whether it's housing, education, psych. Occupational therapy, physical therapy, ABA. 00:28:37.000 --> 00:28:50.000 What I've learned in the past year with our committee is we've got a lot of great stuff going on and nobody knows about what every community is doing and we don't have enough of the great stuff going on because we're a huge state. 00:28:50.000 --> 00:29:03.000 With a low population base. The the the cloak of confidence is interesting. I have been with people who are on the spectrum somewhere and I would not have known it. 00:29:03.000 --> 00:29:12.000 Unless we move them out. Or the comfort zone. I'm gonna take 2 s on what I call, figure one of my funniest stories. 00:29:12.000 --> 00:29:28.000 I had an individual who was facing an enormous amount of problems with the IRS because he was made and I'm going to try I'm dummying up this a little bit so it's no confidentiality issue but he was made the executor of the state and he never followed it filed any papers. 00:29:28.000 --> 00:29:37.000 He have the material and he never got to do it and he was very odd and I won't go into the oddities of his behavior, but he was really odd. 00:29:37.000 --> 00:29:41.000 But he had a hundred 41 IQ so he was on he was a Asperger's the kind of person. 00:29:41.000 --> 00:29:55.000 No eye contact, etc, etc, all the social deficits. And I was retained by an attorney saying he's and I excuse me for using the politically incorrect word. 00:29:55.000 --> 00:30:02.000 I was told that they were thinking and he had to be psychiatrically disturbed. And they got really upset with me. 00:30:02.000 --> 00:30:25.000 I said, I don't think so. This is very strange. And my education that I, if any of you remember Boston legal, I'm not gonna ask for a hand raising, but there was a guy called hands and he used to be then became the Medical examiner, I think, on CSI or something, but he was, he was definitely on the spectrum and always very neat but his hands he had 00:30:25.000 --> 00:30:32.000 oddities as a movement and I'm sitting in bed. Getting ready to write a report. And my wife goes, what's going on? 00:30:32.000 --> 00:30:35.000 I go, oh my god, oh my god, that's him. And I said, that's what he is. 00:30:35.000 --> 00:30:51.000 And they mentioned him being on the spectrum on Boston legal and it opened up my whole world. And long story short, he got when we wrote the report up and we explained that he was incapable of doing these kinds of things based upon a true disability. 00:30:51.000 --> 00:30:57.000 But it wasn't psychiatrically disturbed. He was. Developmentally disturbed, for ever. 00:30:57.000 --> 00:31:03.000 They, they, they stop the action in the IRS and they let him read to the case and they gave most of the money back. 00:31:03.000 --> 00:31:11.000 I thought that was kind of a cool outcome by looking at 141 IQ. Never would have been vote. He went to school. 00:31:11.000 --> 00:31:20.000 He had had a job that he was in for 30 something years. Very good at it, but boy when they moved his cubicle where he was working to another place We had about 3 months of disruptive behavior. 00:31:20.000 --> 00:31:27.000 So this is kind of, Discs kind of the things that we have either too much of a look at this mental health or too much of a look that it isn't mental health. 00:31:27.000 --> 00:31:39.000 And then what do we do? Because we're not really good at social parts of the 00:31:39.000 --> 00:31:50.000 The programs and and and there are overlaps and we have to have both. But we have to be better, I think, at the integration and not letting one be. 00:31:50.000 --> 00:31:55.000 So dominant than the others. Next slide, please. 00:31:55.000 --> 00:32:04.000 Looking quickly up top. This is a little bit more on the overshadowing and I just think I covered that and I underlined clinicians perceptions. 00:32:04.000 --> 00:32:10.000 And I'm gonna ask those of you that would like to just think about this. How many have you ever dealt with people with seizure disorders? 00:32:10.000 --> 00:32:15.000 This is a parallel. And if you've dealt with people who see res, they go to the neurologist. 00:32:15.000 --> 00:32:24.000 And they'll come out, some of them come out with an increase in their medicines, some of them come out with a decrease, some of them come out with no change. 00:32:24.000 --> 00:32:37.000 And when you listen to what was said in the neurologist visit. This is the clinician's perspective and this is based upon tolerance of certain kinds of behaviors, your experience with the IDD spectrum. 00:32:37.000 --> 00:32:46.000 And I'm gonna say the IDs, but all of the different IDD things. When somebody comes in to a neurologist and they say, well, how was your month? 00:32:46.000 --> 00:32:54.000 It's really good. Any problems? Nope. No escalation, no, no, no extra problems with my seizures at all. 00:32:54.000 --> 00:33:11.000 And then the next person is always a horrible month. We had more seizures. If you go in and you actually check how many seizures the increase or decrees It's based upon the subjective presentation of the patient and not objective data heard by the physician. 00:33:11.000 --> 00:33:14.000 That goes with pain that goes with disorientation that goes with acting out. We have IDD kids that are acting out in the home. 00:33:14.000 --> 00:33:28.000 Some families have more tolerance. So severity is really a subjective kind of thing unless we've got them in a institution where we can watch. 00:33:28.000 --> 00:33:30.000 And check these kind of things out. So, how severe are they? We have to be really careful. 00:33:30.000 --> 00:33:39.000 And how our biases or the biases of the care providers are distorting what we're really seeing. 00:33:39.000 --> 00:33:51.000 We have to talk about the specific disorder and and for me That becomes really critical on what are the full capacities this individual. 00:33:51.000 --> 00:33:57.000 Are we dealing with just a developmental disability or whatever? Do we have brain damage? Do we have a close head injury? 00:33:57.000 --> 00:34:06.000 Have we had a toxic substance? Is it being fetal alcohol? All of those things. Lead into 00:34:06.000 --> 00:34:17.000 How we address in quote severity or the generalization of the difficulties and what we can actually expect. Without limiting and having the Pygmalion effect that we're going to start. 00:34:17.000 --> 00:34:24.000 Thinking oh they can if they've got this this is the only they're only gonna get to this level but we have to be honest about not trying to get. 00:34:24.000 --> 00:34:30.000 People into a place where they can't do what's being asked. Well, that's why I like ABA because it's so regimented. 00:34:30.000 --> 00:34:41.000 And you can make the progression. Based upon achievement, but not assumed because they're very charming when you sitting at the table until they don't get there. 00:34:41.000 --> 00:34:49.000 Gravy passed on and they have a hissi bed And there's ways to be able to start looking and how the disorder should be treated. 00:34:49.000 --> 00:34:54.000 If anyone comes up with that. You're going to win the Nobel Prize, we won't have to meet anymore. 00:34:54.000 --> 00:35:02.000 But I think that the bottom line, which still comes from the, autism group, the IDD group. 00:35:02.000 --> 00:35:14.000 The severity of symptoms. Prompts more of a medical or a psychiatric intervention. And the idea that we under diagnose. 00:35:14.000 --> 00:35:21.000 The mental health, this is often leading the mistreatment or non treatment of these conditions. It's much more complicated than that. 00:35:21.000 --> 00:35:31.000 I mean, I just, I've, I've sat for 50 years. Watching the evolution and it's the lack of coordination of care. 00:35:31.000 --> 00:35:38.000 Mutual respect among the treating disciplines. That I think is as critical. You know, we run to get, we run to the psychiatry people or to the physicians. 00:35:38.000 --> 00:35:48.000 Please give us a medicine that that decreases agitation. So then we give them one, the decreases agitation, but increases. 00:35:48.000 --> 00:36:05.000 Somulence or Focus. And so the respect and giving us a way of better assessing is going to be critical to figuring out what to do and then having the community resources next. 00:36:05.000 --> 00:36:11.000 These are the statistics that are not mine. I think they're, They're fascinating. 00:36:11.000 --> 00:36:28.000 And when we talk about documented factors associated with institutionalization, One of the things that that the dab or the the study group found is that every single one of our groups has problems. 00:36:28.000 --> 00:36:37.000 Whether it's institutionalization or a psychiatric facility or a jail or in a non-productive home. 00:36:37.000 --> 00:36:46.000 All of these chronic problems give us a lot of trouble and So what we have to try to do is. 00:36:46.000 --> 00:37:00.000 And the lack of access planning and ongoing training. I am hoping, Leslie, this is the ego that you and I and have a lot of nice in our group have a license and anybody here that would want to would have a lot of nice conversations over the next year. 00:37:00.000 --> 00:37:08.000 When 2 32 becomes 6 32 and we can talk about these issues. How do we gather the information? 00:37:08.000 --> 00:37:17.000 What we want is we want a statewide database that allows us to have accurate. Ideas about what's happening and what the limitations are and what we've tried. 00:37:17.000 --> 00:37:22.000 I've read more IEP. How many of you have read IPs or or treatment plans? 00:37:22.000 --> 00:37:30.000 That have these goals and they keep saying the same thing for 20 years. Or they they don't identify really what we can do. 00:37:30.000 --> 00:37:41.000 So this is. This is really critical and I have one friend who has a son who has multiple things, but one of his things is on the spectrum. 00:37:41.000 --> 00:37:46.000 He would be driving down the interstate in the back of his father's car and see something shiny on the side of the road. 00:37:46.000 --> 00:37:52.000 Generally silver could be anything from a bottle cap to a necklace and he would get so agitated. 00:37:52.000 --> 00:38:01.000 That, They'd have to stop the car and you have to go back a half a mile and pick that thing up because he could not get his focus off. 00:38:01.000 --> 00:38:09.000 And what do we do? And God bless it and and I If he ever sees this, the father knows who he is. 00:38:09.000 --> 00:38:17.000 This man has supported his child in the way that I can't believe the kids shakes my hand now, I the high contact has some affect and makes a joke. 00:38:17.000 --> 00:38:25.000 So I never want to think that we can't help people go beyond where they are, but I don't. 00:38:25.000 --> 00:38:33.000 And I'm gonna use a stupid example. I was a competitive swimmer and I always wanted to be really good, but I couldn't swim Butterfly and no matter how long my coaches put me in the water. 00:38:33.000 --> 00:38:37.000 I could never swim butterfly, but they always told me I could. 00:38:37.000 --> 00:38:42.000 And I never became really, really good until they recognized that I was a really good freestyle. Sucked at Butterfly. 00:38:42.000 --> 00:38:47.000 I couldn't do it. And I wasn't very good at Butterfly. And he impressed him back. 00:38:47.000 --> 00:38:55.000 But I was a really good freestyleer in my life. Began to develop as a swimmer. It's a long, long time ago, believe it or not. 00:38:55.000 --> 00:39:02.000 To see me, you'll know that that's a miracle. But long time ago, and we have to know what they good at, not comparing them to everybody else. 00:39:02.000 --> 00:39:09.000 For each of us you know how many of us are in positions where we never thought we would be in because we weren't good at some things. 00:39:09.000 --> 00:39:16.000 And people failed to recognize what we were good at. And how do we share this data? How do we encourage and how do we not feel depressed? 00:39:16.000 --> 00:39:25.000 One of the things I would like to be getting some input from later. And I'll give you my contact information later is. 00:39:25.000 --> 00:39:32.000 What do we do? What do we do in the community? How do we, how do we? Find a way to share the information. 00:39:32.000 --> 00:39:35.000 And. 00:39:35.000 --> 00:39:43.000 Now develop. System of providers. We've had the autism group down at Marshall that was so well known. 00:39:43.000 --> 00:39:52.000 We have some ABA. And pay people we I've tried to mainstream some kids but that's not always work for one way or the other. 00:39:52.000 --> 00:40:02.000 We don't we don't have as many. Special needs teachers out there anymore. There's a lot of things that are deficits to get in our way. 00:40:02.000 --> 00:40:10.000 And the Last thing and this is the place where I've because I've been seeing some of the chats coming up. 00:40:10.000 --> 00:40:15.000 I'm not now, I used to be really good at the social security parts of the IDD stuff. 00:40:15.000 --> 00:40:28.000 But the bias. And the, idea of What are people's rights and what do we have responsibility for and how can we best impact it and how do we bring the families in so that don't feel overwhelmed. 00:40:28.000 --> 00:40:35.000 That's one of my biggest concerns is that we ask families to try to do things that that we've been trained to do. 00:40:35.000 --> 00:40:40.000 And it scares the hell out of them and they never get used to it because if something doesn't go well, they panic. 00:40:40.000 --> 00:40:48.000 And they don't know how to not get upset, which then. Over stems the person in the in the environment we get a call to the police. 00:40:48.000 --> 00:40:52.000 Next slide. 00:40:52.000 --> 00:41:01.000 These are the kind of things we've talked about this already. And we talk about ideology and I think that's important. 00:41:01.000 --> 00:41:10.000 For structuring. The kinds of programs we can do. If you have FAS kid, a fetal alcohol kid. 00:41:10.000 --> 00:41:16.000 And they're in trouble in school, we're in trouble because there's not a lot we're going to be able to do that's sustainable because that damage is done. 00:41:16.000 --> 00:41:26.000 It's just like having somebody that's had a really bad from a lobe injury, TBI. 00:41:26.000 --> 00:41:31.000 Who has no impulse control, their executive functioning has been done. We have to know what in the medications may or may not alleviate aggression. 00:41:31.000 --> 00:41:43.000 If certain parts of the brain and they we keep struggling and then they end up either institutionalized. In a mental institution, I hate this that word. 00:41:43.000 --> 00:41:49.000 Because we don't have the step down stuff that's safe. This is really difficult and I put the last. 00:41:49.000 --> 00:41:56.000 Line in here on my own. I love this. 00:41:56.000 --> 00:42:06.000 The 3 first ones I suspect everybody knows. If you're gonna be working with people to try to advocate, but the last one is the hardest one and that's honesty. 00:42:06.000 --> 00:42:11.000 Of the system of what they're doing, the people that are taking care of what they're doing. 00:42:11.000 --> 00:42:17.000 And I think really, really, really. The honesty of the people that are dealing with their family members. 00:42:17.000 --> 00:42:25.000 I have a brother who is a drug addict. I have not talked to him in several years. But our family did not want to accept that he was never going to be what we thought we were going to be. 00:42:25.000 --> 00:42:30.000 We had 5 high performers in our family. And we have one who could have been who was a genius. 00:42:30.000 --> 00:42:33.000 His genius was as he was a, 00:42:33.000 --> 00:42:41.000 He was a contractor. He built barns. He had he had a he had a patent on a barn door for any of you, the Horssey people. 00:42:41.000 --> 00:42:47.000 And then one day he built a barn and they put non-galvanized nails into it. 00:42:47.000 --> 00:42:54.000 And it rusted away and all of his assets went and from that day on he was not very functional. 00:42:54.000 --> 00:43:04.000 And we had to be honest. And that's the hardest thing in the world. Whether it's mental health issues. 00:43:04.000 --> 00:43:14.000 It can be across the board. I think Jason's had some really good points. We use for discipline what we were usually raised with. 00:43:14.000 --> 00:43:23.000 Or our attitude towards health care. Or now the worst ones are Dr. Google. If you have families that are given a care plan. 00:43:23.000 --> 00:43:27.000 We have to get an honest report from them about how disruptive the kid is. Do they want to get rid of the kid from the home? 00:43:27.000 --> 00:43:35.000 That's going to be a different thing than them having the cultural thing of how can we possibly ever get rid of our child, then they're angry that they're not getting the community support they want. 00:43:35.000 --> 00:43:39.000 On the other hand, if we can't take them out of the house, we're leaving them unprotected. 00:43:39.000 --> 00:43:46.000 And sometimes the advocates can't win. And those of us that are trying to help. 00:43:46.000 --> 00:43:47.000 Sometimes aren't even aware what the right thing is and it varies by family. It varies by community. 00:43:47.000 --> 00:43:56.000 It varies by condition. So next slide. 00:43:56.000 --> 00:44:01.000 Now we go to the case presentation. Any questions before we go? I've been seeing the comments. 00:44:01.000 --> 00:44:08.000 I wish I could have responded to all of them. I'm humbled by the fact that I may not know as much as you all do. 00:44:08.000 --> 00:44:14.000 But I've been I've been doing this a long time. And in most cases, I'm a do gooder. 00:44:14.000 --> 00:44:20.000 I was a, I was a seizure specialist as a intern. That was one of my areas. 00:44:20.000 --> 00:44:26.000 And we dealt with ideocratics or idiopathic seizure disorders that we couldn't figure out why. 00:44:26.000 --> 00:44:38.000 And this is I think a part for me that is more We thought because they had seizures, there's just something the matter and we call them, we called them epileptics. 00:44:38.000 --> 00:44:43.000 Well, we have people with season disorders that would never get a try. When I came down here and I did my internship. 00:44:43.000 --> 00:44:50.000 We tried to work with people to give them a chance to to do stuff. Where we weren't biased. 00:44:50.000 --> 00:44:55.000 About the fact that they couldn't. There was a woman named Jeannie that had terrible things. 00:44:55.000 --> 00:44:57.000 She was one of the first people in the country to get a John's office to get an implant. 00:44:57.000 --> 00:45:05.000 She wrote to me. The day that. She returned from Johns Hopkins with her. 00:45:05.000 --> 00:45:11.000 Implants and she said my god I have gone through one full day of my life without having a seizure. 00:45:11.000 --> 00:45:17.000 Now I don't have to struggle so much to do what everybody else seems to do just like this easy. And she made wonderful strides. 00:45:17.000 --> 00:45:24.000 We had one guy that would sit there and if you're looking at us and all of a sudden he get up and he'd run and you go through a playclass window. 00:45:24.000 --> 00:45:32.000 Well, could he help himself? No. All the all the stuff that we did His sensory stuff, he just didn't pick picture things in front of him. 00:45:32.000 --> 00:45:40.000 So we've got a lot of things that that we look at now in the 2 32 not to be 6 32 study group. 00:45:40.000 --> 00:45:47.000 That says what can we do and what kind and this is going to be my last political part because I know we've got about 11 min left. 00:45:47.000 --> 00:45:52.000 We have to do this as unified voices. 00:45:52.000 --> 00:46:02.000 Not just from our each one of our little. Tubes as I call them. We've got to be able to say. 00:46:02.000 --> 00:46:10.000 This is a universal problem, not just for us with the IDD kids. But the ID to kids that become IDD adults for the families that have other children. 00:46:10.000 --> 00:46:15.000 We've had, I had one case where I had to take one of the children out of the home. 00:46:15.000 --> 00:46:20.000 It was horrible. It's a long story. But the rest of it was they had no no capability of. 00:46:20.000 --> 00:46:27.000 Of. Of keeping the family intact. If this child stayed there, they had 4 other kids. This was the interest. 00:46:27.000 --> 00:46:33.000 So there's a lot of the things that break my heart. There's other things that anger me because of a policy. 00:46:33.000 --> 00:46:49.000 And there's other things that really frustrate me because The luck that I have as a forensic expert is guess what folks I get to see every single piece of paper on a person who is in a litigation thing, whether it's against Barbersville or against Res care or against DHHR. 00:46:49.000 --> 00:46:55.000 I get to read all this stuff. And the sadness is that some people have not read what's gone on. 00:46:55.000 --> 00:47:01.000 We have one person, the one of the res one of the Starlight people. I think there was at 11 treatment facilities. 00:47:01.000 --> 00:47:07.000 And I read every page. And they're doing a great job. This kids lived on his own. 00:47:07.000 --> 00:47:15.000 But they should have read what was going on because every single place did the exact same thing over again thinking they were going to because they were smart they were going to get a different result. 00:47:15.000 --> 00:47:20.000 So. Case presentation. 00:47:20.000 --> 00:47:25.000 When I read this, it scared me to death. 00:47:25.000 --> 00:47:34.000 Do I have to read this? This is the grown up. I need the kids. 00:47:34.000 --> 00:47:39.000 So let's say how much you wanna wanna do this. This is your. Part that we hadn't rehearsed yet. 00:47:39.000 --> 00:47:47.000 Sure, sure. Well, we can go through, definitely hit the highlights and while everyone's going through it and then we have our questions and discussions. 00:47:47.000 --> 00:47:53.000 So again, As we go through here, chat's been wonderful. Keep it up if you prefer chat. 00:47:53.000 --> 00:48:00.000 And then raise your hand or let us know if you want to comment, but this is the get down and into the discussion. 00:48:00.000 --> 00:48:05.000 So, I'll just go over and highlight a few things if that's okay, Dr. 00:48:05.000 --> 00:48:06.000 You go for it. 00:48:06.000 --> 00:48:12.000 Clement. Right, so we have, 2 younger males who are twins. Pretty significant in stature. 00:48:12.000 --> 00:48:19.000 6 2 in general. This is average between the 2 240 pounds both live with their mother. 00:48:19.000 --> 00:48:32.000 Father is not in the home and and an uncle live a couple of miles away. And one of the twins has been diagnosed with an intellectual disability. 00:48:32.000 --> 00:48:35.000 We're gonna leave it unknown for right now just to Add some spice to it to the discussion. 00:48:35.000 --> 00:48:49.000 The other twin has not been diagnosed with an intellectual development of this ability. Both are showing aggression more and more as they age. 00:48:49.000 --> 00:49:02.000 And just to give you a little bit more, Luke, the one who has been diagnosed with intellectual or developmental disability, has caused some significant damage to the home where he lives with his mom. 00:49:02.000 --> 00:49:12.000 And has also started to show some aggression in her personally with others. His brother is aggressive to others but is not damaging property. 00:49:12.000 --> 00:49:23.000 A lot of it's contained within the home. Has it gone into the community just yet? So we would throw in some genetics and some. 00:49:23.000 --> 00:49:33.000 Shared environment and a little bit about a little bit about yes both were evaluated Julianne a great question so just like Julianna started, what questions would you ask? 00:49:33.000 --> 00:49:40.000 We've, we've included some here, but do not let that limit you. So what are the differences? 00:49:40.000 --> 00:49:49.000 What are the similarities? Similarities based on what Dr. Klaiman has mentioned, what should we watch out for and not fall into a pit of bias. 00:49:49.000 --> 00:50:07.000 Let's, put it out there generally right now. 00:50:07.000 --> 00:50:10.000 Twins and perhaps family too. That's a very good. Kind of gets back to the strength training approach or strength approach that Dr. 00:50:10.000 --> 00:50:16.000 Clement mentioned. 00:50:16.000 --> 00:50:23.000 One of the things that you here is our first bias. They both come from the same family. So why the heck are they different? 00:50:23.000 --> 00:50:31.000 That's the first one. I'm the oldest of 6. Boy, you wouldn't know it if you would, cause there was some similarities, but. 00:50:31.000 --> 00:50:39.000 Real differences and the one that's the least productive is the one that. Probably has the biggest heart. 00:50:39.000 --> 00:50:49.000 And gets made fun of by us a lot of time because we call him our little old grandmother and it's a guy sorry about the somewhat sexist way of saying that but He just worries. 00:50:49.000 --> 00:50:58.000 So this is our first the considerations. We don't know what neonatal issue was. How, how would the pregnancies with the mother on both of those? 00:50:58.000 --> 00:51:07.000 Has something changed there? Were there any birth related deficits like. At birth. 00:51:07.000 --> 00:51:14.000 Where there may have been. Bad birth where there was some damage done to the brain. Etc, etc. 00:51:14.000 --> 00:51:23.000 Hypoxia, what with the blood and you go and you look at all these things and by the time we get them in for evaluations, nobody really wants to go back and try to get this unless there's litigation. 00:51:23.000 --> 00:51:35.000 That's what I've learned. Nobody really can tell you what their afgar was or whether they met developmental milestones because a lot of times people can be motor coordinated and fake it. 00:51:35.000 --> 00:51:43.000 We used to talk about people with low cognitive development. And I'm talking the sixties to seventies. 00:51:43.000 --> 00:51:51.000 We're absolutely delightful, but they would they would make up a life. You didn't know that because they did not want to be identified as being and I'm going to use the old term MR. 00:51:51.000 --> 00:51:59.000 They didn't want They presented a completely different view of themselves until put into a situation with the evaluation. 00:51:59.000 --> 00:52:05.000 Veal things and somebody wrote here and I wanted to give Gillian I think it was Jillian that said that the testing is terrible. 00:52:05.000 --> 00:52:14.000 I hate to agree with you. When we have the, we have the ABAS, whatever. They're checklists. 00:52:14.000 --> 00:52:15.000 Right. 00:52:15.000 --> 00:52:30.000 Not, not only in terrible, but I've sent. 3 consumers. In the last year. To get full psychologicals and they literally just regurgitated the key pro assessment back to us. 00:52:30.000 --> 00:52:31.000 Please. 00:52:31.000 --> 00:52:40.000 They didn't over they did not break it down to where they truly are. They regurgitated the key pro assessment right back to us. 00:52:40.000 --> 00:52:49.000 Jillian is unfortunately that's where everything is if you take a look at EMR now and please all of you have been in touch with the medical health system. 00:52:49.000 --> 00:53:02.000 Get a copy of the medical record because what they often do is the intake information taken on January one is the exact same information that's in the chart 3 years later as they problems. 00:53:02.000 --> 00:53:09.000 And what that does is that biases care. It looks like they've not been compliant. They haven't been taking care of themselves. 00:53:09.000 --> 00:53:18.000 But I hear your frustration. But because there's such a demand for these kind of things, we're now in a position on one of our other at risk populations that we have to do at risk assessments. 00:53:18.000 --> 00:53:27.000 So hopefully they're going to change the law now. And there's a presumption of non-confidence in anybody 14 years younger. 00:53:27.000 --> 00:53:32.000 In the in the system. We don't have the people to do them. So they do the least. 00:53:32.000 --> 00:53:41.000 Possible. The problem for me is I if anybody has ever run into my reports. I just finished a 32 page report. 00:53:41.000 --> 00:53:47.000 Where the person that did it on the other side of the litigation did an 8 page report, which was unsatisfactory by the way. 00:53:47.000 --> 00:53:51.000 So your frustration is there. What do we do? You have to. Who do you turn to? 00:53:51.000 --> 00:53:54.000 Who in the agency that you're working with? Where are the referral bases? 00:53:54.000 --> 00:54:04.000 This was more than one psychologist. This was, I'm sure they got fully paid to do it the way they should have done it. 00:54:04.000 --> 00:54:12.000 But if you read the report, literally it is word for word, the key pro assessment. And we already had a paper assessment. 00:54:12.000 --> 00:54:22.000 We know what that says. So why can't you as a psychologist? Break it down more so that we know where this member is truly having issues. 00:54:22.000 --> 00:54:29.000 Oh, that would be the first recommendation coming out of this meeting and we will take back to the dad part is getting an accurate workup. 00:54:29.000 --> 00:54:38.000 That's the problem is. For instance, on all of the check, the vinyl and the, but the AB, without keeping. 00:54:38.000 --> 00:54:48.000 That's my learning disability. Their checklists and they're based upon the subjective reports of people in and around the environment or maybe the short term stuff that you see. 00:54:48.000 --> 00:55:04.000 In a. In a in a workup. But we don't know what bias, we don't know how accurate that is and we don't have a coordination of people that may be going into the home or going to the school system and somebody wrote that they haven't seen people going in the home. 00:55:04.000 --> 00:55:09.000 We don't have anybody out there. But he's gonna pay for it. And part of this 2, Gillian is. 00:55:09.000 --> 00:55:18.000 Is the psychologist who are doing this sometimes are doing it given CMS. And or other agency restrictions on their fees. 00:55:18.000 --> 00:55:23.000 And to do it right is, is a 00:55:23.000 --> 00:55:31.000 Is a really difficult thing to do. In 3 to 4 h. The one case that I did where we got the kid. 00:55:31.000 --> 00:55:37.000 Is on the IDD waver list. It took me about 27 or 28 h. 00:55:37.000 --> 00:55:38.000 Bye. 00:55:38.000 --> 00:55:49.000 Well, I know, I have kids that are One waver now because of the autism and things like that. 00:55:49.000 --> 00:55:57.000 Should age out. Because they've gotten the support so by 5, 6, 7, 8, they are good to go. 00:55:57.000 --> 00:56:01.000 And for whatever reason, that's not happening. 00:56:01.000 --> 00:56:06.000 Well, I think we're dealing with, I think we're dealing with policy and we're dealing with deeply ingrained. 00:56:06.000 --> 00:56:16.000 Views of things and I think Groups like this collecting these data. Our only chance to present and and and I will work with with Leslie. 00:56:16.000 --> 00:56:20.000 Through echo to try to put these as part of our. Next level of response is the more specific we can get. 00:56:20.000 --> 00:56:31.000 I see Randy's here, the whole bunch of people I know the names now. We need these kind of real life situations that we can turn into. 00:56:31.000 --> 00:56:39.000 Stories that are understandable like this because I know I got to see there was a note on the bottom of one of these slides that. 00:56:39.000 --> 00:56:48.000 Kind of the rest of the story as Paul Harvey used to say. They're not aware. 00:56:48.000 --> 00:56:53.000 They're not aware that IDD, they're not aware that IDV is not a specified thing like strep throat. 00:56:53.000 --> 00:57:06.000 Correct. But you have, and it's happening all the way around and The whole reason we sent these members to go get new psychologicals is because we were trying to find out. 00:57:06.000 --> 00:57:18.000 If they are starting to have dementia. Or if it's their RDD diagnosis. Is there a reason we sent them? 00:57:18.000 --> 00:57:19.000 I'm writing this down. 00:57:19.000 --> 00:57:28.000 I will never send another consumer for first full psychological again. I will send them to NURROW because at least then maybe somebody could do something different. 00:57:28.000 --> 00:57:29.000 Okay. 00:57:29.000 --> 00:57:41.000 Well, I think the thing that you, may also be talking about is general psychologist may not have the skills of neuropsychologist who has been trained in some pediatric or in developmental disabilities will have a better way of measuring and taking a look at things. 00:57:41.000 --> 00:57:49.000 Just so you know that. But feel free after we, and I'll give my, contract information at the end. 00:57:49.000 --> 00:57:55.000 Feel free to write to me and talk to me about these. Let me know about these things because I'd like to bring them up to our group as well. 00:57:55.000 --> 00:57:58.000 Okay, great. 00:57:58.000 --> 00:58:09.000 The assessments we would conduct who knows ones that are addressing the issues. We still have to have a good medical work up on the on the aggression. 00:58:09.000 --> 00:58:15.000 And on the acting out, we have to, there's a rule out. The model is bio psychosocial. 00:58:15.000 --> 00:58:30.000 And. I'm a diabetic. I have to take care of the biological sizes of me that are impacted by the I have to take care of the biological sides that are impacted by the psychological size because I'm a sugar addict. 00:58:30.000 --> 00:58:38.000 That are, that are also impacted by the social world of how much stress I'm under and how my wife is treating me that particular day and whether I need soothing. 00:58:38.000 --> 00:58:43.000 I'm not being silly. But don't deal with all 3, I can take all the medicine in the world. 00:58:43.000 --> 00:58:48.000 I'm still diabetic. I still have trouble. So we have to we have to be coordinated. 00:58:48.000 --> 00:58:53.000 We have another group that meets on discharge from the prison system. We've never talked to each other before. 00:58:53.000 --> 00:58:59.000 Never. And we're talking to each other. We don't wanna make a move now unless we have this multi discipline group coming in. 00:58:59.000 --> 00:59:06.000 So if you have troubles with getting the right kind of stuff. 00:59:06.000 --> 00:59:12.000 While this does not fill out fall under the forensic coordinators job, but we have a one of the smartest people I've ever met. 00:59:12.000 --> 00:59:17.000 Colleen Lillard is our clinical forensic director for the state. Forensic director. 00:59:17.000 --> 00:59:23.000 Hi, as a forensic psychologist get to see the work that other people do and I feel like a creepy face. 00:59:23.000 --> 00:59:34.000 Because I'm so critical. So you've raised an important position and please take the time at the end of this to write to me and give me what your concerns are and. 00:59:34.000 --> 00:59:39.000 We'll try to put that into our pipe and light it up and smoke it while we're working. 00:59:39.000 --> 00:59:47.000 This year when we get redone. The treatment options gonna be different. I mean, that's a wide open question. 00:59:47.000 --> 00:59:50.000 How are the mother and father getting along? 00:59:50.000 --> 01:00:00.000 How many of you have dealt with families where the fathers got no buy in whatsoever? He's busy, doesn't want to be bothered, he doesn't want to come home to the house and the wife saying, you know what, Joey. 01:00:00.000 --> 01:00:08.000 Just beat the crap out of his sister. He's sitting in this room now rocking and the file says I've had 200 die at work. 01:00:08.000 --> 01:00:14.000 Well, the mother doesn't want to be nasty to the child by implementing what we know and long term by being. 01:00:14.000 --> 01:00:24.000 Consistent and stable. We're going to get reactions to bring them to the highest level of functioning for that person given their ability. 01:00:24.000 --> 01:00:32.000 And not having fantasies that they're going to run for office for the presidency. And that's some people come in expecting the providers and you all know this. 01:00:32.000 --> 01:00:37.000 To make things better to the point that this person has no problems left over. 01:00:37.000 --> 01:00:43.000 I got I got a rip quad tendon that I did about 8 or 9 years ago. I've done everything right. 01:00:43.000 --> 01:00:44.000 And I still can't do the things that I used to do on that leg and I have to accept that. 01:00:44.000 --> 01:00:54.000 And stop trying to push myself. It's stupid. Or being old and still working, you know, lots of hours. 01:00:54.000 --> 01:01:04.000 So in this case, I think there was a an add on to this wasn't there Leslie a little bit more information about the situation? 01:01:04.000 --> 01:01:09.000 I think. 01:01:09.000 --> 01:01:10.000 Right, Let's see that from the chat. 01:01:10.000 --> 01:01:16.000 I, I think that was in a note from the semi. But here. And I think this is the stuff we've just kind of been hinting at. 01:01:16.000 --> 01:01:28.000 Where does it come from? And remember medical and psychiatric the same and neurologists and psychologists and all of us should be getting along and working together with our specific areas and not assuming. 01:01:28.000 --> 01:01:34.000 That we all know everything. I know what I know. I know what I don't know. The environmental factors. 01:01:34.000 --> 01:01:42.000 What if you living, what if you moved and you're now living next to a railroad track? And you've been in a really quiet rural setting. 01:01:42.000 --> 01:01:47.000 What's that gonna do? I mean, it's that simple thing. What happens if you send a child to a middle school who's always been on a small 35 student small school in a rural area. 01:01:47.000 --> 01:01:56.000 And now has 75 or 80 people they have to deal with. What do you think is going to happen when they come home? 01:01:56.000 --> 01:02:02.000 This last thing is really important. This is the planned or reactive aggression. What happens standardly now? 01:02:02.000 --> 01:02:09.000 Not standardly, but. We have a child with whose IDD. 01:02:09.000 --> 01:02:18.000 Something happens in the environment. Excuse me. Mother may turn the television off. It may be a sound that may be lights or whatever. 01:02:18.000 --> 01:02:26.000 Person because they have disinhibition loses control the mother comes out of the kids smacks a mother in the face breaks her nose this is the case mother tries to stop him. 01:02:26.000 --> 01:02:32.000 She hits the, he hits her again and then he goes running through the house, destroying things. Screaming. I hate this. 01:02:32.000 --> 01:02:38.000 I didn't sound like he knows what he's doing. They call the cops. The cops come and guess what he does. 01:02:38.000 --> 01:02:45.000 He bashes the cops head. Now we've got assault from the mom, destruction of property, and assault on a police officer. 01:02:45.000 --> 01:02:56.000 Where are they going to take that person based on those behaviors? Those behaviors. Criminal. But are they reactive to something internal? 01:02:56.000 --> 01:03:02.000 Or they planned? Are they just something that happens because this is the way the kids do? We have to look at the environment. 01:03:02.000 --> 01:03:14.000 Or did the kid plan to do that? And then maybe a mix. Sometimes some of my folks who on the Asperger's end of the things would have all these odd things, but then say, but you know, I knew a mom came home. 01:03:14.000 --> 01:03:18.000 If I'd peed on the rug in the carpet, she wouldn't get me for everything else as a quote. 01:03:18.000 --> 01:03:24.000 And so there was some planning in there. It's never all or nothing. In my my view. 01:03:24.000 --> 01:03:27.000 Behavior MoD. 01:03:27.000 --> 01:03:34.000 It's how do we identify the triggers? How consistent are they? What is something new? What happens when it doesn't work? 01:03:34.000 --> 01:03:40.000 How do we get people to buy into the responsibility that the family may have or the school may have or the friends may have? 01:03:40.000 --> 01:03:47.000 To be participants in this behaviour problem. When we first started having behaviour therapy in the sixties and seventies, that should age me. 01:03:47.000 --> 01:03:56.000 We knew that when grandma came to visit on Sunday, all the efforts that we put in between Monday and Sunday, we're gonna go in the can. 01:03:56.000 --> 01:04:04.000 Cause grandma would give him the candy whenever they wanted the candy and. We had everybody on board and grandma would say, oh, I can't do that to Johnny. 01:04:04.000 --> 01:04:11.000 He's my grandbaby. That innocent, that non malignant, but that difficult. 01:04:11.000 --> 01:04:21.000 The communicative stuff, assuming that people understand our words. I have to warn people when I'm interviewing that I use. 01:04:21.000 --> 01:04:28.000 Dr. Words and big words, cause I like them. And if I don't, if they don't understand me, they should tell me to quit it and stop doing that. 01:04:28.000 --> 01:04:33.000 But we have to do that and it has to be done. I'm gonna go back to Gillian's thing. 01:04:33.000 --> 01:04:40.000 We have to have better ways of going in. And looking at what's going on and not just filling out forms. 01:04:40.000 --> 01:04:45.000 To fill out forms. And that's what I think a lot of the things that happen on the CMS and everything else. 01:04:45.000 --> 01:04:52.000 People just fill out the forms. Did they ever read them? Do they ever go back and look at the IM, the IPs? 01:04:52.000 --> 01:04:57.000 That's I'm sorry the IP is my stuff the, IEPs do they set reasonable goals? 01:04:57.000 --> 01:05:03.000 They break them down into these little fractional behaviors. But what happens? Is there honesty there because we're supposed to be making Progress. 01:05:03.000 --> 01:05:10.000 Well, progress sometimes. Is not as easy to measure as we think it is. The pharmacological treatment. 01:05:10.000 --> 01:05:23.000 I've been doing this a long time. And there are people that do very, very well in modifying some of the dysfunctionality in their lives by taking the meds and taking them regularly. 01:05:23.000 --> 01:05:34.000 And there's some people that like people who were on dialysis. Who couldn't drink water or eat tomatoes and between visits would do so much we had to keep them on the machine to the point that it was dangerous to their health. 01:05:34.000 --> 01:05:43.000 They had to take responsibility for that and not lie to us for going back to the honesty thing. As an forensic person. 01:05:43.000 --> 01:05:50.000 I think one of the benefits for me over the past 30 years, 35 years. This is really kind of crazy. 01:05:50.000 --> 01:05:54.000 I don't trust anybody when they come in telling me this stuff. That's part of being a forensics person. 01:05:54.000 --> 01:05:58.000 If somebody says I'm depressed. I don't say, oh, tell me more about that. 01:05:58.000 --> 01:06:04.000 With warmth empathy and positive regard. I say, show me. Give me evidence. So I can measure it. 01:06:04.000 --> 01:06:14.000 And I can make a decision based upon real data. Not the stuff that we have. So this is I know we've covered a lot and I and I've not gone over every slide in detail but This is complicated. 01:06:14.000 --> 01:06:23.000 The fact that Leslie is committed to doing these sessions. And maybe getting more and more micro after the first what 4 5. 01:06:23.000 --> 01:06:33.000 Sessions and you know if anybody would put up with me again for another hour when we get more micro I'd be more than willing to get back and do more case studies and. 01:06:33.000 --> 01:06:41.000 And try to figure out. From our committee standpoint. What can we do? And this is a the last one we look at all of this. 01:06:41.000 --> 01:06:57.000 Do you know it takes people? 4 things we realized. Is we need more step down facilities that are safe and humane, not bricks and mortar, and I'm talking bricks and mortar literally like with Just send a block, but we have to have step down facilities. 01:06:57.000 --> 01:07:04.000 We have to be able to put a forensic home for instance in part and you know in Huntington this does scare the hell out of people. 01:07:04.000 --> 01:07:10.000 And when we say we have IDD, we have. All these other things, it scares people. 01:07:10.000 --> 01:07:16.000 We're not going to have to take care of folks and put them in the right facilities. We need trained professionals. 01:07:16.000 --> 01:07:21.000 We can't be getting kids that are coming out of high school at 19 years old and getting a job with. 01:07:21.000 --> 01:07:29.000 Let's say CPS who have to live in their own communities and take care of. Acting out kids and determining whether there's parental neglect. 01:07:29.000 --> 01:07:37.000 And we have to get paid some more money. We have to have data. Good data. And we have to have. 01:07:37.000 --> 01:07:45.000 Open legitimate sharing across institutions. That's across all of you that are special interests. And across departments. 01:07:45.000 --> 01:07:54.000 DHHR has to talk to DCR. DCR has to talk to education. If we don't do that, we can't do anything. 01:07:54.000 --> 01:08:00.000 And the last part is we need money. And we have to show that if any of you and I ask for money. 01:08:00.000 --> 01:08:05.000 We have to show that there's a return on investment and it's not going to be wasted and squandered. 01:08:05.000 --> 01:08:09.000 And that's a, I know it's a little bit off the topic of just measuring. 01:08:09.000 --> 01:08:17.000 D. Leslie, I hope I didn't go too far scans But we gotta, I'm. 01:08:17.000 --> 01:08:22.000 I just think this is a wonderful place for us to be that we're actually now talking and just think. 01:08:22.000 --> 01:08:27.000 In the balcony of the legislature. And it's not just people that worried about down. Or one of the syndromes, cause that gets people off on a track, but we all go together. 01:08:27.000 --> 01:08:40.000 We all go together and say, Let's have our day down there at the. At the legislature. 01:08:40.000 --> 01:08:47.000 One all of us as a group. Speak the same language or what's needed. And I'm stupid enough. 01:08:47.000 --> 01:08:56.000 I think at times to believe that numbers will count. If there's enough enough of us making Not whining noise, but. 01:08:56.000 --> 01:09:05.000 Addressing these things in a rational manner. We may actually get some people to listen to us. We do have some advocates, by the way, in the House of the Senate both. 01:09:05.000 --> 01:09:15.000 Some of the deeds is real interested. Senator, Kelly. And I've had several other people come up since we were down there. 01:09:15.000 --> 01:09:28.000 So. My contact, cause I didn't put on the slide. Is DAC. Like David Allen Claim, and DAC at Claiman Associates, CLAY. 01:09:28.000 --> 01:09:40.000 MASI A tes.com. That's my business address. I have not yet. 01:09:40.000 --> 01:09:50.000 Put up a new one that would just be for these kind of 32 Type of activities. Is there any way to save the messages? 01:09:50.000 --> 01:09:59.000 Yes, so in the transcript we'll have the chat. We'll have all of this and and just as a review, these are being saved on a website. 01:09:59.000 --> 01:10:04.000 Will send the link to the in the summary email that I mentioned in the chat. So we'll have some supplemental materials. 01:10:04.000 --> 01:10:09.000 We'll have the link to the recording if you want to share if you want to review again. And we'll also include Dr. 01:10:09.000 --> 01:10:13.000 Claim in the the comments transcript. 01:10:13.000 --> 01:10:22.000 And, just, Emily wrote about. Something that I just want to, you know, once adjudication is complete, program corner, and, and all this kind of stuff. 01:10:22.000 --> 01:10:33.000 We're trying to exhibit to the legislation now. We have a cooperative arrangement between the forensics people with sharp and the people at the regional jails and the prisons. 01:10:33.000 --> 01:10:41.000 So when people come out of the sharp and have been brought back to confidence and in all that they're not sent back to the jail system. 01:10:41.000 --> 01:10:49.000 And immediately have medication changed. We are actually communicating. Which is decreased dramatically. I don't have numbers yet. 01:10:49.000 --> 01:10:53.000 Types of problems we're having with the people that are within. Those 2 systems moving back and forth. 01:10:53.000 --> 01:11:02.000 So we have to figure out as in the strategic intercept model that we're using. To define what we're doing here. 01:11:02.000 --> 01:11:11.000 The big deal. The big deal is us being able to show that we're actually getting reactions and we are actually talking to each other and 01:11:11.000 --> 01:11:16.000 I'm not very polynomial. It may sound like it today. I'm a real hardcore. 01:11:16.000 --> 01:11:18.000 Person. I don't like When there's no data, I don't like these other things. 01:11:18.000 --> 01:11:32.000 I think all of you If we can if we can work to show. And explain and have people understand that IDD is just not. 01:11:32.000 --> 01:11:39.000 Singular construct. It is a spectrum and it's it's a wide ranging thing and each one of those wide ranging things are problems. 01:11:39.000 --> 01:11:46.000 Senator Hunt passionately talked about the fact that his son grew up. This is open. It was on. 01:11:46.000 --> 01:11:53.000 Just to set it to share thing. That's what we have to deal with. We have to deal with kids, which are the more tragic things. 01:11:53.000 --> 01:12:02.000 But then the more problematic is what do we do when they're not cute kids anymore? So any more questions before we bolt? 01:12:02.000 --> 01:12:09.000 I know we were 15 min over but All these comments are great. The burnout. 01:12:09.000 --> 01:12:13.000 Behavioral respite. 01:12:13.000 --> 01:12:18.000 And what we'll do, we'll share it with you, Dr. Klaiman, so that you could take it to the work group, the policy group. 01:12:18.000 --> 01:12:19.000 Maybe, pieces. 01:12:19.000 --> 01:12:26.000 Right. Kelly King. Lord only knows. 01:12:26.000 --> 01:12:31.000 You want to help? And. 01:12:31.000 --> 01:12:32.000 This is just really tough. 01:12:32.000 --> 01:12:38.000 It is, we're living in, we're living at, Our son has a lot of obsessive behaviors. 01:12:38.000 --> 01:12:45.000 Hasn't left the house and probably for years on aggressive self-injury yeah, we're living this. 01:12:45.000 --> 01:12:59.000 And I work in the systems and I'm a behavior specialist and all the things we thrown at him and nothing sticking and you'll hear him in the background even today, you know, he's specially distressed. 01:12:59.000 --> 01:13:06.000 So. I'm not alone. I know. Numbers of others who are in similar situations. 01:13:06.000 --> 01:13:18.000 And I'm seriously concerned about. Numbers of individuals on the spectrum who are coming up and You know, the, co-occurring ID and potential. 01:13:18.000 --> 01:13:28.000 To overwhelm the system that's already poorly servicing them. So serious concerns. Thanks for your work. 01:13:28.000 --> 01:13:35.000 I said this, Senator Trump, thanks for the honor of being there given the responsibility of trying to do something. 01:13:35.000 --> 01:13:39.000 This is my last, this is my last hurrah kids. This doesn't work. 01:13:39.000 --> 01:13:46.000 I'm giving up on leaving a legacy. I have to. Based on what I've done before. 01:13:46.000 --> 01:13:48.000 So. 01:13:48.000 --> 01:13:59.000 Well, I have people messaging me, you know. Placement for any of these individuals is exceptionally difficult. 01:13:59.000 --> 01:14:11.000 Agencies. Can't get staff agencies. Certainly cannot afford to pay the kind of staff that a lot of our demographic really needs. 01:14:11.000 --> 01:14:21.000 It's leading to burnt out staff. Burnt out professionals who were. Working with their hearts because that's all that's left. 01:14:21.000 --> 01:14:36.000 And burnt out families who either have no choice but to deal with their adult child. Or or place them hours and hours away if there's any placement at all. 01:14:36.000 --> 01:14:43.000 Which then puts that love one hours and hours away from any of their natural supports. 01:14:43.000 --> 01:14:47.000 And that's providing somebody steps up and takes them. 01:14:47.000 --> 01:14:51.000 Good summary. 01:14:51.000 --> 01:14:55.000 Well, I hope we get together again. Look forward to the next session. 01:14:55.000 --> 01:15:02.000 We will. This time next month and Dr. Claim, thanks for joining us. Thanks everyone for going over and spending your lunch time with us. 01:15:02.000 --> 01:15:09.000 We'll see you later.