Articles, Blog

Working With the Equally Diagnosed: Mental Illness & Developmental Disability

December 20, 2019

So thank you for coming. I am really happy to have Dr. Elise Magnuson here to talk with us about mental illness and developmental diagnosis and I can tell you that she got her Masters of Social Work at New York University and then went on to get her Doctorate of Psychology at Colorado School of Professional Psychology And I can also say that she has had some teaching experience, she is coming to us from Portland, Maine. So a traveling scholar, a visiting person for us, which is great. And also she is Clinical Director of Granite Bay Care Inc. in Maine which provides services to cognitively impaired individuals who have a history of problematic behaviors ranging from sexual offending to violence and self-injury And she will introduce herself further but thanks so much *Elise* Thank you. So I do a number of different things and wear a couple of different hats at Granite Bay Care everybody we support has a developmental disability which means that they have mental retardation or pervasive developmental disorder or autism And about half of them have anti social personality disorder And have been really involved in the criminal justice system, which has a whole host of other issues attached to it And the other half are mentally ill And I became very interested in this subject because the folks who do mental illness well Don’t know how to do developmental disability stuff well And the folks who know how to do developmental disability stuff well get very confused by mental illness And so it just really sort of piqued my curiosity, so I’m very pleased to be able to be here this afternoon I cover a lot of material in this presentation So it would help me to know sort of who you are and why you’re here so I can try and hit your interests more and if there are things that nobody’s interested in I’m just gonna skip them Um so if we could start with you? *Person 1* I’m Steve Tupper. I’m part of the field faculty For 26 years. But as I mentioned coming in I work at Sand Ridge, which is a hospital- *Elise* Mhm, I’m familiar with Sand Ridge In the last 24 years I had ended up working with those who have high psychopathy, developmentally disabled *Elise* Who some people don’t believe exist *Steve* The developmental disability or the psychopathy? *Elise* The combination I believe it exists but some people don’t *Steve* But I like population, I really warm to that group of guys and it’s fun to work with *Person 2* I’m Sandy Kohn, I’m the director for field education. We have 13 field units in the full time program, and almost the same number in the part time So I’m here partly for selfish reasons, continuing kind of education for me but I wanna see if there’s any information, too that I- we have a field unit as well in developmental and other disabilities so- and they’d be able to assist- and I don’t think Susan’s here so I’ll be here on the instructor’s behalf *Elise* Okay good *Person 3* Hi I’m Pam Staab and I’m a social worker here in Dane County and I work with kids who have developmental disabilities *Elise* Okay *Person 4* I’m Kari Moore and I’m the same thing *Elise* Okay, okay *Person 5* Josh Davidson and I’m the same thing. *Person 6* I’m *inaudible* I’m an advisor for the part-time MSW program *Elise* Okay *Person 7* I’m Andy Meyer, I’m a program support teacher in Madison School Districts and I’m also a parent of a child with developmental disabilities *Elise* Okay *Person 8* And I’m *inaudible*, just a student in the mental illness community *Elise* Okay *Person 9* I’m Christina Gooch, I’m also a student *Elise* Okay, that’s very helpful thank you So as I said I’m Clinical Director at Granite Bay Care. I also have a private practice where I focus on evaluations and do a lot of forensic type of evaluation, a lot of sex offending and people get very confused when there’s also a developmental disability involved and sort of teasing some of that out I am also a licensed social worker as well as a licensed psychologist so I’m dually diagnosed I guess *chuckles* We are switching away from mental retardation to intellectual disability, the nomenclature is changing It’s frequently something you’re born with, it is unlike a mental illness that you sort of get later on This is frequently from birth There’s evidence of it from an early age, you know, my guys come with volumes of records. You get evals from when they were two and three and five You know, so there’s very clearly developmental trajectory And it doesn’t get better, it’s not something you cure When I’m talking with people, trying to help them understand the difference between a developmental disability and a mental illness For people who are not familiar with either I often talk about mental illness you can give a pill to That’s something that you can expect to get better You can’t give a pill to somebody for their developmental disability and expect that to fix the developmental disability In the diagnosing of developmental disabilities, you need an IQ below 70 If you’re reading reports, if you’re looking at stuff, you need to know that when people use the WAIS, which is how most of the IQs are found There’s a range It’s not a precise number, if anybody has ever built anything where- like you’re cutting wood Or cutting paper and you measure it twice Because you know that if you do it only once you’re off half an inch in one direction or the other so you gotta hit it just right The same thing happens with psychological testing And with IQ So there’s a range in that. So I have diagnosed people with mental retardation who have an IQ of 72 I have also said people are not mentally retarded when they have an IQ of 68 Because you need the other piece of the impairment and adaptive functioning Their ability to move through life has also to also be impaired as well as the IQ So if you see evals where somebody has an IQ of 72 and they’re still mentally retarded It’s not that the psychologist got it wrong And if you see somebody who has an IQ of 68 and they’re not diagnosed with mental retardation, the psychologist also probably didn’t mess that one up either We are talking about a very small group of people The bell curve is sort of the normal distribution of what IQ scores are Most people are average, which is 100 Most college students are about 112 But to be mentally retarded you have to be in the bottom 2% Of intellectual functioning and that’s really very low And, just parenthetically, I think the people who have the hardest times Are the people who sort of right here in this border line range Because they have none of the skills but they don’t hit the disability level so they get none of the support either And when I think about the services that they receive I often wish that they could get the same services I’m gonna skip this part Unless anybody here has a burning interest in IQ and what that means? Working memory is your ability to hold information in your head While you’re thinking about it When somebody gives you a number, like a phone number and you’re holding it in your head, that’s your working memory The analogy that everybody uses, back before we were all on computers and smart phones, it was your desk And the stuff you had on top of your desk Your long term memory was your file cabinet So it’s the stuff you’re sort of able to hold in your head Now with developmental disability this becomes really important Cause I often talk about my guys can’t forget what they’re thinking about before they’re done thinking about it You know, so if you’ve got your working memory and you looked up your password and you hold it in your head while you go and put it in your computer They will forget it between looking it up and going to put it in If you’re doing treatment with them or trying to help them access services You can’t expect them to hold it in their head Cause it’s gonna fall out And it’s not that they’re being a pain in the neck, it’s not that they’re being difficult it’s that they can’t hold it there So that’s what the working memory is Which is a little bit different from the processing speed Which is how fast you can think about things How fast you can make connections, how fast you can put things together The best way I’ve heard intelligence sort of talked about is it’s the engine under your hood And if you’re going up a mountain in a Ferrari, you get there really fast and it’s nice and shiny and sparkly If you’re in a Mercedes you still get there pretty quickly If you’re in a Nissan Sentra you get to the top of the mountain The Ferrari and the Mercedes is there way ahead of you But you still get there Many of my individuals are in a YuGo or a moped They can still get to the top of the mountain It just takes them a lot longer And they’re a lot slower getting there Which is in my context why we can manage them in outpatient environment Because hopefully the staff is smarter than they are and can get there first, although sometimes not Other questions about intelligence? What it means? Why it’s important? Okay, so when you’re assessing, I sort of geared this towards clinical assessment, when you’re assessing But it would also work for services or case management When you’re assessing somebody it becomes very important to know who the guardian is because the guardian is a person who can give consent for treatment or to receive services So that’s always very important If they are not their own guardian and they cannot consent to treatment, they cannot sign releases of information so just bear that in mind A big problem I think that gets underlooked. Underlooked? Overlooked in assessment is figuring out whose problem is it Sometimes people legitimately come in, the developmentally disabled and they’re saying, “This is my problem” “It’s bothering me, I want to fix it, I want to change it” But in my experience, very often other people are coming in saying this person has a problem They’re not doing it the way we want them to They need to change And just like for those of you who do marital counseling, when people come in and say “My spouse is messing everything up, they need to change” It doesn’t always work well So you want to pay attention to who’s problem is it and what is the problem I see a lot of, “They’re not doing what they’re told” Remember, they are people And most of us don’t do what we’re told You know, if I got brought in every time, you know, if I was sent to therapy because I wasn’t doing what my boss told me to And I wasn’t doing what the people in my house told me to And I’m here visiting family and if I wasn’t doing what my mother told me to And so that sent me to therapy for being oppositional So you wanna really bear that in mind and try and tease that out as much as you can Another issue that you need To be very mindful of Is that individuals with developmental disability often have a very difficult time talking about their internal process So when you have somebody else coming in to therapy and you say, “Well how did that make you feel?” You know, we’re social workers we care how people feel And we expect them to be able to tell us People with developmental disabilities may have a very difficult time telling you When you say- well you’re doing your cognitive behavioral treatment and you say, “Well what did you think?” Because their working memory is so poor they may not know what they think So you need to be mindful of that The other thing that often happens Is that they can’t connect the right stressor with their reaction So what you need to do then as a clinician or as a case worker is really get a thorough history You can’t count on, you know, them saying, “everything’s fine” To me, that everything’s actually fine And when you say, “Well has anything new in your life?” And they say no You can’t count that nothing has changed So you really need to do a thorough assessment of what’s been going on, what’s changed And they may not connect What is very obvious to you, which is why you need to do the assessment Often individuals get referred, individuals with developmentally disabilities get referred because they have challenging behaviors Which, this is my personal thing, I hate that as a phrase I think it’s rather demeaning And what we really ought to say is, you know, something along the lines of, “They’re annoying everybody around them” Or “They’re causing problems” And what I find very helpful is no matter what the behavior is you want to think of it as a form of communication They’re trying to tell you something, they’re trying to do something Much like all of us are With our behavior So you wanna think about it, what’s the message being sent In that, you need to really understand the context of the behavior The individuals with developmental disabilities, particularly ones getting services have a whole lot of context all of the time They’re getting different staff in and out With different personalities, different ways of doing things that are in different settings They’re at home, they’re in treatment, they’re in day program So you really want to be able to tease out what’s happening when with whom And, using a good strengths-based model, when does it not happen Under what circumstances with whom? Because you can a lot of information that way What you can glean from that Is what are the things that are- A what are they trying to communicate, you know, if I’m only hitting you Maybe Peggy’s a jerk Or isn’t nice to me But also it may be that somebody over here is able to work with me in a way that’s more effective That I can tolerate better And you can replicate that with other people So finding out those moments when it’s not happening becomes really important You need to find out what happens before the behavior and after it If you’re thinking about good learning And you’re remembering your classical conditioning and you’re remembering your- I’m just totally blanking on- operant conditioning You know, and punishment and rewards. Find out what’s happening before as well as what’s happening after the behavior Are they trying to escape something? Are they trying to get something? Are they anticipating something? And so really doing a good analysis of the precursors and the post cursors, what are the rewards? coming out of this? And what are the punishments? I often talk about my guys might be mentally retarded but they’re not stupid Which means if they’re trying to get something What they’re doing is working You know, assume the behavior is working on some level That if I don’t, and I’m gonna pick on you cause you’re sitting right there If I don’t want to go with Peggy And so I hit her And then I don’t have to go because I’m now sent over here Assume it’s working on some level and so our job as social workers is to figure out What or why or how is this working for them? That’s that communication piece You want to find out when it started How long its been going on And as all good social workers sort of ask, “Why now?” “Why are you coming in now? What has precipitated the referral?” You need to speak with somebody who knows the individual well Preferably somebody who has seen the behavior Who knows what’s going on Again, because the individual isn’t gonna be a good self-report person You want another point of view to sort of understand that from other people I know one of my biggest frustrations is when somebody gets sent to me And somebody who has never seen the behavior comes along with them Whose only got it through third-hand Comes and says, “Well they’re not nice and they’re being oppositional” So I start to ask my questions “What are they doing? “Well I don’t know I’ve never seen it” So when you’re doing your interviews, get somebody who knows the individual well Somebody whose seen it, who can put some words to the experience That becomes very important One of the tricks I’ve had to learn is get the third-party informant to just describe the behavior Don’t ask them what’s happening because then they’ll give you these global things that are really not very helpful But ask them to describe it play by play by play You know, I’ll say if you were writing a screenplay what does it look like? And then they can sort of tell- “Well they walk over here and then they hit” “And then they cry. Or they sit in the corner when you say it’s time to go to lunch and” you know? Then you get much more information And lay people often don’t- will use clinical words, will use social work concepts inappropriately I found. And so it’s always helpful to make sure that you’ve got the right meaning You wanna gather information about changes in eating, sleeping and interest in activities Those are sort of big markers for depression and anxiety and other mental illnesses And when you’re assessing somebody’s internal state Are you depressed? Are you anxious? Are you manic? And they can’t tell you And I don’t care how good the person is, nobody else can tell you your internal state Finding these external markers can be very, very helpful And so when people say, “Well they’ve started sleeping a lot more. Or they’re a lot tireder” Pay attention to that Pay attention to people who are suddenly not hungry Or who used to really love going to day program and now they’re not so interested in it You know, those are markers that you can pay attention to Find out about changes in living situations I don’t know how it is out here, but I know where I am people often end up moving a lot And even within the same agencies so while they may not have changed agencies they may have changed programs or houses And that can be a big source of stress And again if the problem’s been going on for awhile, find out why they’re coming in now You absolutely, much more so than with non developmental disabilities, need to assess for medical problems Absolutely, absolutely, absolutely I think the bio-psycho-social stance and orientation is important across the board But I think with individuals with developmental disabilities, it is super, highly critical And a couple of other, you now, adjectives in front of that You need to know that things like Down’s syndrome is associated with thyroid problems Which often mimic depression So you need to make sure that’s assessed Constipation can cause internal pain, can assume that everybody here’s been constipated, but you sort of know what’s going on and you fix it You eat your prunes You know, but with individuals with developmental disability they can’t- all they know is inside hurts And we have a number of individuals who- when they get constipated, their challenging behavior skyrockets So you wanna know that, also just by the way, constipation can kill you If it gets bad enough, which I didn’t know but I find appalling We have one woman who I work with who’s 22 and she’s right on that cusp and she is a cute woman, girl Who looks, at first blush, like every other 22 year old woman You met her in a bar you wouldn’t know that she was developmentally disabled And she would have- she would cut on herself, she would get in more restraints, she’d be more aggressive and on a relatively regular basis It wasn’t till we figured out, and actually it was a line staff who figured it out, this happened every 28 days When she was premenstrual Once we were able to help with that, things calmed way down But what she wasn’t able to do was say, “Hey I’m feeling really irritable and PMS-y. I’m gonna go take some Motrin” And this is where getting other- you know, getting that third party report becomes really important Ulcers and heart-burn, again, their experience is just my insides hurt. There’s burning or I can’t eat, I’m uncomfortable And I don’t know how to say, “Wow I think my upper GI is a little inflamed and I’m going to have to lay off the spicy-” They can’t do that And again, they may have a hard time identifying the sources of pain, where the pain is coming from, why they have pain And so that can also contribute to behaviors One of my favorite clients has major depressive disorder with psychotic features as well as mental retardation, she has a huge history of trauma and bad family And her stomach is in constant pain It always hurts her And we work really hard to try and figure it out, we’ve been to doctors and haven’t been able to sort of tease out What this is- she’s had colonoscopies, you name it, we’ve gotten it done What it took us a while to figure out is that when you drink 4 liters of Mountain Dew in a 2 hour period You’re gonna get a stomach ache She still can’t connect those two events, although the rest of us finally have And when she is in pain she becomes very aggressive, assaults staff, assaults her- tries to kill herself She makes suicidal statements And gestures of varying dangerousness Some of which are funny, some of which aren’t But all she knows is my stomach- you know, I’m in pain and I need the pain to stop So you really do need to assess for medical issues Assess for substance abuse Drugs or alcohol. I scoffed at this, cause “I work at a residential program and so I know my individuals aren’t drinking and using drugs I know this Until they started coming back from day program drunk And they would go home and visit their parents and come back still stoned So you do need to assess You also want to assess for medication side effects And there’s a huge tension When you live in an institution between needing to be well enough behaved so you can live with everybody else And not being over medicated And when you see- I see a lot of individuals who I believe are over medicated And so the medication they’re on to reduce their agitation May also make them lethargic And make them lose all interest in fun activities And make them not want to do anything and then people are saying, “Oh they’re depressed” Well no they’re not depressed, they’re over medicated And so finding that line Medications can make you anxious as well And then my favorite is when people give medications to counteract the side effects of the medication that they’re countering the side effects for And that just never seems to go well And also pay attention to nicotine and caffeine Those can have huge impacts on people and for people who can’t regulate that intake well You know, my client who drinks two liters of Mountain Dew You know, that can also have an effect As can the withdrawal You know, when somebody decides, “Okay you are drinking too much caffeine, you must stop now” “Cause it’s not good for you” I have to say the worst six weeks of my entire life were when I decided to go caffeine free Was awful! Heroin has nothing on going caffeine free So pay attention to that as well When thinking about mood disorders Your depression, your mania Dysthymic disorders, hypomanic disorders Remember that you’re trying to assess an internal state For people who are not good at explaining their internal states So again, you wanna look at the behavior and think of that as communication You know about the internalizing, externalizing, they’re sort of two ways to deal with your distress One is to turn it inward, one is to turn it outward They may do a lot of turning it outward They often don’t have a lot of repertoires of behaviors. There’s not a whole lot of coping skills that they’ve learned and can use and can draw on to manage it Loosely said, talking about their energy level, the sleep-wake patterns Is a good marker As well as facial expressions When you look at the diagnosis for depression and they talk about feelings of hopelessness And when you’re trying to assess somebody for hopelessness Who is living in a place they don’t like With random people coming in and bossing them around Knowing that they’re never going to live on their own They’re never going to have a family and you know, the same sorts of things that everybody else wants And you’re assessing for depression How much of it is just their life and reality based and how much of it is a mood disorder? You know, becomes really important to sort of suss out When you’re thinking about medicating- or anxiety disorders and what to do around that Again, it’s hard to assess an internal state It’s hard to assess whether somebody’s struggling with their working memory and that’s why they sort of have to keep going back over something Or because they’re anxious So you wanna look at, again, some of the external behavioral things Are they sweating, are they shaking? Are they flushing, are they more irritable than usual? As those markers, when you’re looking at your diagnosis Rather than- do they feel on edge? Cause that’s hard to gauge I think psychotic disorders are unbelievably hard to diagnose effectively, A in general and B with this population And you have to have somebody who’s verbal, so they have to be on the mild end of mental retardation By the time you start hitting the moderate end, while they may be able to speak, their ability to communicate verbally gets pretty significantly impaired and if you’ve got somebody who’s non verbal I would argue you pretty well can’t diagnose the psychotic disorder I don’t know how you would assess somebody for a thought disorder when you can’t hear their thoughts How you diagnose a delusion when somebody’s not talking to you So you have to have somebody who’s verbal So somebody comes in and they say, “I think they’re schizophrenic or they’ve got a psychotic disorder” and they come in your office and you say, “Well do you see or hear things other people don’t see or hear?” And they’re gonna say “yes” And then start telling you about all the things that happen when they’re alone Because nobody else is seeing or hearing them So you have to get really sort of careful, and again, the internal experience of a psychotic process is often hard to explain when you’re very bright and very verbal And when you’re not and you’re trying to say, “Wow I hear these voices” “And they sound like people but there aren’t people there” is hard, so I often talk about “Do you hear people talking when they’re not there?” That sort of very specific concrete stuff can be much more helpful than saying, “Do you hear voices?” And if anybody finds a way to really, concretely explain the difference between the voice in your head and the voice outside your head Lemme know, cause I haven’t come across it yet So you wanna be careful, are they thinking and hearing their thoughts? Or are they hearing voices? One of the particularly important things is to watch and see if they’re responding to stim- you know, like there’s something there that when’s there’s not. I was sitting with one client Trying to figure out if he was, you know, psychotic or not, was he actively psychotic, were the meds working, were they not working? He had post-traumatic stress disorder so were these flashbacks or were they actual hallucinations? He also had a brain injury, he would’ve been perfect for Sand Ridge You know, and how much of it was that? And then I noticed he kept looking over in the corner And he would talk and he’d look over in the corner, and we’d talk and he’d look over in the corner and we’d talk And so I finally said, “What are you looking at in the corner?” And he says, “The lion” I’m like, “It’s psychotic disorder” I got this one. There are no lions in your flashbacks The brain injury doesn’t make you see lions, you know, we’ve got a psychotic process going on here When you’re assessing for delusions And you’re working with people who work with individuals with developmental disability They often, and I don’t know why, but they often dismiss it as just sort of a crazy idea And then try and talk people out of it, which, you know just doesn’t work with delusions Because that’s the nature of a delusion, you can’t talk people out of it And so, I find that staff are pretty reluctant to talk about it Cause, you know, that’s crazy. That’s not true Or they simply dismiss it I have one individual who, if you ask him will very carefully explain to you that he works for the FBI And what he does for them in great detail You’ll be pleased to know at the moment he likes me, so the FBI is on my side It’s always not good when he doesn’t like me cause then the FBI’s gonna come and get me But again, it becomes tricky in sort of figuring out what’s true and what’s not true And when you’re paranoid And everybody is out to get you Is that a delusion, I mean by the time it’s the FBI, you’re kind of okay But when all the staff hates you and they’re out to get you And they’re trying to make you miserable and they’re trying to sabotage you Maybe it’s true Maybe you’re kind of a jerk and nobody really likes you And they’re all actually out to get you Yeah, or they’re jerks You know? And they don’t understand what you need and so they’re not managing you well I have one individual who I work with who is currently sitting in jail Who is- so I’m not working with her a moment- who is absolutely certain that staff were trying to screw her up and staff were trying to make her screw up And get in trouble and she is a classic psychopath And I dismissed a lot of it Because she was being difficult and she was doing a whole host of other things Running away, threatening- you know, committing a number of crimes and so I really dis- you know, she’s just being a pain in my neck But then after she’s sitting in jail and I start sort of looking back over it and I’m like, “I wonder if staff were actually out to get her” You know, it seems entirely possible cause she’s making their life miserable So you wanna be careful about that You want to pay attention to thought processes and are people’s speech becoming disorganized? And their thoughts getting tangential? Because they have a poor working memory and can’t remember what they were talking about Or because their thought process is that loose So I do think that this is one of the trickier areas to diagnose I’ve had a number of large fights About whether or not people with developmental disabilities can have a personality disorder I believe they can because they have personalities You remember your personality disorders, a pattern of thoughts, feelings and behaviors across situations that’s problematic They have thoughts, feelings and behaviors And if it’s across situations you can have a personality disorder As I’ve mentioned there are a number of people who do not believe you can be both mentally ill or mentally retarded and a psychopath I believe you can Because I believe, particularly- and at this point I’m talking about in the mild range not in the moderate or severe because that gets much harder to assess And so theoretically I believe it’s possible, I just think we don’t know enough to be able to assess it yet You do need to rule out the impact of the context And living in institutions, living in group homes, can really influence how people respond, how people react And so you can’t, you need to really tease that out And again, remember when you’re diagnosing your personality disorders across all areas, long-standing patterns But I absolutely believe you can be borderline and mentally retarded Or anti-social Or narcissistic Or dependent. Dependent is a much tougher to tease out. But I do believe you can actually have a dependent personality disorder and be mentally retarded Where that gets tougher to tease apart Is they really are dependent And they really can’t do a lot on their own And navigating situations that you don’t understand can be very anxiety producing So you want to rely on somebody else That’s not the personality disorder piece So again, you wanna use behavioral observation as much as you can, you wanna get as many reports from people, sort of looking across the broad spectrum Rather than the one staff who comes in and says, “Everybody thinks she’s borderline” And you say, “Well why does she- you say that?” “Well cause she’s really emotional” That’s not enough to make the diagnosis In ruling out the impact of living in institutions I have had individuals come to our agency and we have a different model than a lot of the other ones where we live- or where I live And they’ll come and you’re expecting hell on wheels This person is ready to go, we had- we just took an individual in who, when upset puts things in her eyes and in her ears She puts Parcheesi chips, she puts screws She puts- you know, you cannot sanitize a room Well enough to keep things out of this woman’s eyes and ears And when she came to us, she was having six person restraints You know, on a daily basis, trying to keep her from poking things in her eyes And she would get mad at 6 people sort of glomming onto her, holding her down, so she’d get assaultive And she’s mentally retarded but she’s not stupid So when she figured out she had MRSA which is a communicable disease She started biting herself and spitting in staff’s face, trying to give them MRSA You know, so we’re like bracing for this woman to come. You know, okay we’re ready Different situation, very different behavior. She still puts things in her eyes and in her ears but it’s about once or twice a week When we restrain, we restrain her for- we have a different restraint model, so we only do two minutes and then if you need to reengage you reengage But instead of hours on end with people, like holding her down, 10 minutes So people respond very significantly to the environment they’re in And when you’re diagnosing personality disorders, you really need to pay attention to that You cannot rule out the effects of abuse Individuals with developmental disabilities end up being abused much more than the general population About 40% of people end up having been physically or mentally abused And again, it gets tricky to tease out, they may not recognize it as abuse So when you’re doing your history and you say, “Were you ever sexually abused” You know, and they’ll say “No” And then you’ll find out that they weren’t sexually abused, but they were having sex with their uncle You know, from the ages of 4 to 12 “Wasn’t sexually abused, he never hit me” So you need to ask very specific questions, you need to help them recognize it Which is always dicey because if they aren’t traumatized by it You know, do you want to increase the trauma then? I mean it’s- that’s a whole different conversation They may be afraid to tell people Because again, you have somebody who’s very dependent on their staff, very dependent on their family You know, and it’s the same with kids and they may not want to rock the boat And if it’s not that bad and they’re getting some goodies In a relatively bleak life, it may not, again, from their perspective, make sense to tell people And unfortunately the system is filled with abuse And they may have been abused before and told nothing happened So why would you tell again? So that’s often a factor, being afraid to tell On the flip side, they may make false allegations to get some sense of control Some sense of control over the environments, some sense of power You know, if I can’t- if I have staff coming into my home, into my residence and I don’t like them And I don’t actually hire them, although we- at least in Maine we talk about, “Well you’ve hired them” It’s not actually true, they can’t really fire them They can’t say, “No, no, I don’t want to work with you today, send the nice staff” A number of our individuals will say they were abused as a way to try and manage staff Sometimes it’s really easy to tell Whether or not they’re lying, I’ve had clients say, “They stabbed me” “Well where’d they stab you?” “In my hand” “Can I see your hand?” There’s nothing The same woman who is- one of the things about my agency is we work with a lot of very- or our staff are a lot of very large men Because they do need to do a lot of restraints And so we have- I know more men over 7 foot on my staff than I think anywhere short of a basketball team So the woman’s who’s sitting in jail Was, you know, being a pain in the neck to staff and she had been restrained And she called the police and said, “My staff strangled me” And the police looked at her, she’s about this tall, white woman And she- they looked at the staff. Who is Claude and I’m not exaggerating, who has hands twice the size of mine And they looked at her neck and they looked at Claude and they finally said, “There is no way that man strangled you and there are no marks” So sometimes it’s a power play, a way of getting in control And getting back to them being retarded but not stupid About a week later, staff caught her holding her hands trying to bruise her neck So that next time there would be marks when she said staff strangled me One of the things that I’m gonna assume you guys have it out here is when people say, “I don’t feel safe” “I don’t feel safe, I need” fill in the blank, whatever that is And I never know what that means And I never know how to address- safe from what, safe from whom? And very often it gets very vague And people who are trying to manage their environment very quickly learn, “I don’t feel safe” can move people And move things, so again, you wanna pay attention to that Questions on assessment before I move on to treatment stuff? No? Okay Again, I recommend talking to the third party who brings them That’s very important When somebody is in residential treatment, they have a whole lot of people in their lives and they all have opinions And they will all share them with you and the individual and tell you what needs to happen One of my biggest pet peeves is when a very good meaning staff or sort of person will say, “Well I think you have an attachment disorder and you really need treatment for that” And they don’t. You know, somebody’s read something on the internet and they’ll say, “Oh look, they have all the same symptoms” So just bear in mind that, while you’re treating an individual, you also need to educate a team And a lot of people around that One thing that’s often helpful when they’re coming into your office and you wanna know what’s gone on in the last week is having a book of some sort that gets passed back and forth So that you can find out sort of what happened in the last week Individuals will say, “It was fine” you find out they were restrained three times and ran away once You know, so it’s a good way of getting the information I have had debates about whether or not people with developmental disabilities can benefit from treatment There- and it’s typically with people who don’t treat them and don’t understand them I believe they absolutely can benefit And I really- I learned this as a clinician And I was fresh out of graduate school, I was doing community mental health work and I had a woman come in who was- she wasn’t retarded But her adaptive functioning just sort of flipped her up over the edge And I was like, “She’s just not smart enough to do cognitive behavioral treatment” “She’s just- she can’t get this. She can’t think abstractly. So she’s coming in because her boyfriend’s beating her and she doesn’t like that” I’m just like “This is not gonna work” About three sessions in, I have no idea of what I said But she looked and me and she goes, “You mean I’m giving up my freedom being with him?” I said, “yeah, you know, he’s hitting on you” She goes, “I worked hard for my freedom, I don’t want to give it up” I said, “Okay” She comes in the next week because it’s community mental health, you come in every week She kicked him out And he wasn’t coming back That’s like, “Mmm got it” You don’t have to be smart to benefit from treatment You do have to make some modifications because your working memory inhibits, because your processing speed is slower and a number of other things So be concrete Do not use a lot of metaphors, do not tell a lot of stories. I like using metaphors, I like- “Well it’s like this” and then you hope that the individual puts the two together and then they internalize the experience of having, you know, learned this or figured it out Don’t do that Cause they can’t move as well from the abstract to the specific So stay pretty concrete, stay specific Use simple sentence structure Do not use compound sentences Do not speak in full paragraphs Short, simple sentences It’s easier for them to process, it’s easier for them to understand and you can communicate just as effectively Don’t assign reading They may be able to read but it’s not gonna be a strength, they’re not gonna do it. You know, I know a number of therapists who like to have people go home and read things and sort of think about them Don’t do that with these guys When you want them to do something, having told you not to go have them read, send them home with instructions These are not the folks where you can say, “Well your homework for this week is to go running three times a week” You have to send them home with a piece of paper that says, “Running, Monday, Wednesday, Friday” That specific, that concrete And avoid yes or no questions. I know you get told this the first day of clinical interviewing You know, avoid yes or no questions But when people aren’t giving you a lot of information, if you’re at all like me you fall into them Because you’re trying to- where am I here? Am I starting? Am I stopping? How am I going? Avoid them, because a lot of people, much more so than individuals who don’t have developmental disabilities Will slip into yes or no responses. And they’ll just say yes to everything Yes I’m feeling sad, yes I’m feeling anxious, yes I’m hearing voices, yes I had a hard week, yes I miss my mother You know, all of those, so you wanna avoid the yes or no questions And really keep it open ended, which then gets a little harder So I often result to multiple choice questions Are you doing this, this or this? And then you can sort of get out of the yes or not piece, but still have some options for them They often have learned, they’ve often been trained to be good Don’t get in trouble and by being good that means doing what you’re told and telling people what they want to hear So they may work hard to tell you what you want to hear Regardless of whether or not it’s true I think something that often gets overlooked is that people will often present as doing much better than they actually are They get really good at faking it. At faking understanding, at faking appreciation for what’s happening Particularly if they have good verbal, a good verbal IQ So they sound like they know what they’re doing And you’ll say, “Do you understand?” and they’ll say “yes” They do, and you’re like, “I’m all set” And they have no clue of what was happening. I was getting consent to do an evaluation And I said, “Well everything you tell me’s gonna end up in the report and you know, if there’s abuse or neglect I have to report that and- so you have very limited confidentiality” “Do you understand?” He said “yes” And I said, “Well what did I say?” “I have no confidentiality ” Well we’re all set I’m good to go And for whatever reason, I said, “What does confidentiality mean?” He said, “I don’t know” So now I talk about secrets Nothing you tell me is gonna be a secret. I’m gonna tell everybody what you’ve told me But he said, “Yeah I understand what confidentiality meant” “okay” Couple of thoughts on treatment Particularly with individuals with- who are living in residential programs Think about how much control they have over their lives Or don’t have. I had breakfast at 10:30 this morning And I had peanut butter toast and a toast with marmalade because that’s what I felt like If I live in a group home, I can’t do that I have to eat breakfast at 8 o’clock cause that’s when breakfast is And if I don’t want the eggs and toast that are on the menu, I can’t go make my peanut butter toast Because the systems aren’t that flexible So you need to bear in mind they have very little control Over what they’re doing, how they’re doing it, when they’re doing it And as I sort of have been working with- one of the things that I’ve really come to appreciate with my individuals is how little there is that gives their life meaning You all have something that got you up, you came here for some reason because there’s something important to you And there’s meaning to your life You know, whether it’s something as simple as you have a job and a family you want to take care of Or whether this is your passion and you can pursue it But a lot of individuals with developmental disabilities don’t have a point to getting up in the morning They don’t have a reason to go through the hard stuff of life All of you are either in school or you’ve been through school so you know school is hard, there are times you wanna quit, but there’s a point to it If they don’t have a point to get through the hard stuff there’s no reason to And, so helping them find a good life, helping them find something that’s meaningful in their lives thats worth working towards Can become really, really critical important piece of any treatment Often what tips me off to that this is the problem is that they’ll say, “He’s not motivated. Nothing’s motivating him” Well it’s because there’s nothing in his life Don’t be surprised when they have a hard time generalizing when they learn to express themselves at day program and you’re like “Yes, we’ve got this!” And you go to the residential program and they can’t do it They just need to learn it there, they don’t- they often don’t generalize from one situation to another very well I recommend you be skill based because it’s much easier to teach skills So when you’re being skill based think about problem solving skills Things that we do naturally to solve problems They need to learn how to do, think about social skills Relaxation skills. And think about thinking skills Teaching people how to think can become really important And then just some concluding thoughts People with developmental disabilities are over diagnosed and under diagnosed. I have seen people come in with 15 different- I’m exaggerating, 4 different mood disorders, were diagnosed with depression, bipolar, borderline personality disorder, mental retardation and an attachment disorder I’m like Figure out what the problem is and diagnose that Or people come in with significant problems and anti social personality disorder and that shows up no where So the diagnostic piece becomes important Good clinical skills, you know, you’re gonna have to think, you’re not gonna- until you get used to it, you’re not gonna be able to go on autopilot the way that sometimes it happens But nobody coming out of this program would ever do that But use your good clinical skills and think about what’s happening in this session and you can adjust to where you need to go As I’ve been saying the biopsychosocial approach is critical You know, I don’t think you can do this work without it And the impact of the environment is critical So those are my concluding thoughts, if there are any questions or- I’m told you all have classes and stuff to get to Thank you very much *applause*

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