 Good afternoon everybody and welcome to our broadcast. I'm Stan Stovall. Today's topic will be how people with severe profound disabilities learn And we're joined in the studio today by clinical nurse consultant Karen Green McCowen a McCowen consultant Karen Thanks for joining us this afternoon. Thank you Stan. It's just great to be here Yeah as regular viewers of our broadcast you are aware already that we often have a live question-and-answer session with our guest at Periodic intervals during the presentation this time However, we're going to open up the phone and fax lines right away right at the beginning of this program and take those Calls as they come in throughout the course of the show So if you have a question, there's no need to wait for the official Q&A session to get started All you have to do is pick up the phone and call and we'll get right to your question And Karen as we do get calls from our audience from around the country, I'll pick the appropriate time I hope I won't interrupt in your presentation But the right time to get in those questions so we can answer them right away sounds good to me Okay sounds good. All right, the lines are open right now So if you'd like to call in your question, all you have to do is dial 1-800-953-2233 To fax in your question, then you should dial 1-410-786-0123 Let me give those numbers to you again. If you want to phone in your question, it's 1-800-953-2233 For faxed questions, it's 1-410-786-0123 Now Karen today is going to talk to us about people with severe and profound disabilities And how we can better work with these kind of people, right? Well specifically Stan, how those people learn. For a long time our systems focus too much On what people cannot do instead of what they can do We also have it had a tendency to assess those abilities in ways that are not nearly As effective or accurate as they could be Right sounds like it's going to be a great presentation So if you're ready I'm ready Then we can get right started Thanks Stan As you know many folks who have the term complex medical and physical challenges Often as a group have problems with movement And some are born with damage to the motor centers of the brain And some have a head injuries during the developing years And I can remember when I came into the field of developmental disabilities There were some 200 ways you could have a developmental disability And that was like almost 40 years ago And in the intervening time some 400 now Different ways that yeah exactly Now a lot of you are probably aware that we can have epilepsy Some individuals during their childhood acquire progressive neurological diseases Or conditions that just get in the way of the developing brain Which doesn't really mature until adolescence But I'd like to tell you a story about a young man that I worked with About 20 to 25 years ago Who for me was a cardinal point in my career In terms of teaching me a lot about the fact that a person's appearance Shouldn't fool you into thinking that nobody's home This young man that you see on your screen Is a seven and a half year old youngster at the time Who at the point this picture was taken might only 13 pounds Seven and a half years old Seven and a half years old He was born on a boat when his mother was coming from Haiti to Miami And she had something that we call an abruptio placenta Which simply means that the placenta Or the afterbirth you know separates before the child is born And the thing that struck me at the time that I want you to remember Is that this youngster looked like any other baby And his injury happened five minutes before he was born And seven and a half years later this is what he looks like So to put this in perspective Karen If the same type of birth that happened in a hospital setting What you're saying is this young man would not have had the okay Absolutely not But moreover I want you to look at what gravity Which is the thing that causes all of our bodies After the age of 30 to begin an avalanche to the floor Wait not so fast though okay Well I'm going anyway So but there's some other issues that I want when you look at him Can you see where his head is relative to the spine His spine is what we call hyper extended And his knees look like they're on backwards Exactly And that's nothing more than what we call You know that little deformity of the knees by the way It's called genuere cravatum Don't remember that There's no need But here's the thing that I learned from this young man Before you start feeling too sorry for him He was in fact one of the most gifted managers of staff I ever met And his repertoire of shaping of adult behaviors Is crafted from the same repertoire that your kids learned To use with you Exactly And if you don't remember the kind of cons that your kids pulled on you Usually they involve large doses of guilt But frankly Henry didn't want to be in any other position Other than on the left side that you see him on now And if you had the gall to put him in any other position You would not be allowed to forget it for like three days Okay and this was strictly from a comfort level for Henry Exactly right But he had no real functional way of communicating And as a result of this gravity began shaping that little body into the form that you see here Now gravity basically you know as I said causes our bodies to reshape But mostly it's our soft tissue that moves toward the floor In this case he's laying down So 2.2 pounds of pressures pressing down on this little guy For every square inch of body surface exposed to the vertical plane So the other thing that was happening is that all of his His lungs have changed shape everything that was going on But if I put you in a position where your head was too far back And you accidentally got excited and food came up You'd aspirate which is what he was doing all of the time So in addition to having only two of five lobes functioning He was also losing about two percent of his body weight a month And that's how he got to be only 13 pounds at seven and a half years When we got him he was in desperate trouble But until we could get him not to con staff Now the other thing that was happening with him is that he would go from a fever From a temperature of about 98 degrees up to 103 to 104 in a skinny little minute And within a few hours after that he would start vomiting And that was you know when he started aspirating At that point I was part of a special quarter team that was designated to go in And in his facility there were about 500 people with gastrostomy tubes Which at that point was more than all of the other facilities in the United States combined And the federal judge says no no we're not going to do this And he said first of all we're going to close this facility And secondly these people are all moving out in the community So our team was supposed to come in and assess all of these folks And we knew frankly that Henry was not going to make it across the street If we didn't do something for him And so the first thing we had to do was to get him off of that left side And get that head forward when you have your head all the way back like this And you have stuff coming up or going down Then it's going to go into your airway So we built a special piece of equipment for him to get him belly down To get gravity to start working on bringing that head forward He did not like it It wasn't painful also? It was probably a little bit uncomfortable But the last time you did 120 sit-ups were you comfortable? No okay No I wasn't, trust me So the issue was a choice between comfort for him And whether or not he was going to be alive three months from then So it took us a while by the way This kid conned everybody It took us a while to recognize how much power he had over the staff And how much control he exerted So we built him a neat piece of equipment And I'm going to show you a picture of that later on Now the problem of course was the staff said Henry does not like it So we said okay staff I'm going to have you sit here I'm going to give you a little piece of paper and on the paper it says Henry is crying profoundly pitifully Severely pitifully Moderately pitifully, mightly pitifully Your job is every 60 seconds you check which one And our mission was to keep the staff so busy That they left their hands off of Henry It took two weeks Well three days later by the way He decided there was no point in playing to an empty house So he just kind of covetched around You know like this But within two weeks that head came forward It was fixed in the position that you see here Fixed there In two weeks it came forward to the neutral position Which is the position that you and I swallow safely in And we also managed to see that back flattened out If you look real carefully that back is really arched And we had a lot of work to do with him But what we learned from this Is that if you don't get to the core issue in a person's life Now he was able to go from 13 to 23 pounds in about three months And if you take your little calculator You'll quickly figure out that that's about A 60% increase in body weight That's incredible Just from straightening out the alignment of the Right and keeping him from aspirating with us had an extension And it You know it's hard to believe that all of this damage was caused simply by gravity Which is something as you said All of us deal with on an everyday basis Certainly not to that extent though You know at that age I guess Well I find it more helpful for people to identify with this If they realize that gravity is a phenomenon that all of us have to deal with The bodies in the early years in particular Is completely reshaped by gravity I mean most kids coming in don't have You know have the incomplete joints Particularly of the you know The extremities The hips aren't completely finished Well everything is soft tissue Yeah everything is soft tissue So easily pliable and if you're left in a certain position It'll lock right in there It truly will Now the drive to move is very very strong in young children And if a baby doesn't have the normal repertoire They're going to use whatever they've got to move Now a lot of kids use patterns that are available to them And our bodies do not like it when we don't use them correctly So that uh what you see then is a lot of form follows function Now in uh you know the what I want you to hear also though That there's been a lot of changes in our perceptions In the last 50 years I came into the field in 1965 And kids that were in the facility that I started in With Down syndrome and the label for them at that point Was mongoloid idiot And uh the labels we used for people in those days Were moron imbecile idiot and all that kind of thing Because we threw those people away And these are the terms that you and I still use probably From time to time to make references to our family When they do things that don't please us But they were genuine clinical labels in the early 60s But we have we have since learned since the 60s That these people can be very productive There's a thought process that goes on and they are not As you said to be thrown away I now refer to people with Down syndrome as the college crowd Of the DD group Because there is uh first of all people with Down syndrome Don't go into congregate care They stay home with their families And uh they're surviving You know when I was in the field in the early 60s The lifespan for 50% of the people born with Down syndrome was five years Wow And the other 50% of those individuals generally did not survive their 20s Now that is gone to people going into their 50s and 60s And we have a lot of other issues that we've found with people So that we know we're making progress with these kind of things And that's obvious I mean what is the difference between what was happening in this country back in the 60s Where they were only living maybe the early 20s possibly And now and when they're living into their 50s and 60s Specifically when Down syndrome Well we've had a lot of attitude alterations A lot of the changes in our field Came as a result of the civil rights movement And we have a lot of better ways of dealing with everything And that includes something that we refer to as Have you ever heard the term maladaptive behavior? Exactly, exactly Well it's always proved more functional for me To consider all behavior adaptive And we have better ways of dealing with those behaviors And we are now perceiving those as functional communication And as we sometimes say The changes that we've made in Down syndrome Have really basically dealt with the fact that we are Not throwing those people away and we're leaving that at home And so we're realizing that some people choose to communicate in some unique ways Some people have a lot of different ways That they tell us what they don't like So our position is that everybody can learn And if we don't give them functional ways They're going to learn the way they Or they're going to adapt to the environment And ways that work for them Sure, exactly Well I'm glad that we at least made some progress in those areas And we move forward to learn that There's something to be gained from everyone else here Yeah, okay All right, I guess we should go on to our next slide Because you have a whole series of slides here Yes, I do We can talk more about this maladaptive behavior Well before we do, I want you to take a look at The creative communication styles we're talking Remember we're talking about Henry You know, and he used the environment Here's a picture of old Henry by the way About three months later Okay And here he is a little back straight Go ahead And here he is with Are we, do we have Henry up yet? Okay So he's got a nice little back straight And that's so much of a difference from the first picture You showed us of Henry Well remember when I told you that the head was fixed in the extension Exactly, exactly It's now up to the neutral position The back is straightened out He's weight bearing, he doesn't look thrilled yet But if you'll remember Henry had functional communication That is, as we used to say Is the, how's that working for you? Now the young man on the right Had another real style When I first met him There was a sign on the top of his bed That said, do not touch Orlando unless absolutely necessary Okay Okay, seems like Orlando's functional communication style was to vomit on people Now particularly if they got too close and he was real good at it I mean he was, he convinced you that you shouldn't come close and touch him We learned later that just as he was learning to walk He had hip surgery and somebody lopped off the top of his hip bones He was going through a growth spurt And because they put him to bed because he didn't respond well to that surgery Bony spurs grew out of the top of those hips And every time somebody touched or moved him Intense pain Intense pain So if you were in that position you couldn't say like go away What he said is come near me and I'll vomit all over you There you go I might do the same thing in the same circumstances, believe me Exactly Only way of protecting himself from this extreme discomfort And when these, what used to happen is when these self-protective behaviors Are perceived as maladaptive That label says that you have funny brain cells And it says I have puking brain cells Instead of normal brain cells and I need to be controlled and contain Rather than giving opportunities to grow and learn like other human beings So he was trying to communicate the pain They couldn't understand the spoken word and didn't understand the vomiting was a way of saying Oh that hurts Yeah, exactly It took two years by the way to get him to work with him To get him to allow people to touch him He was perceived as medically fragile and this is a real bum rap as well And I know a lot of 30 and 40 year olds And some of the folks that you see in a few of the pictures that you're seeing Are much older than they look by the way Because all people who don't bear weight tend to be smaller But a lot of these folks went straight into some of these chaotic and harmful environments That we had back in the 60s and 70s That the rest of us wouldn't have survived by the way And so what I tell my audiences when I talk with them is I say If you think that that person who was pulled and shoved and nobody ever talked to them Is still alive now How fragile can they possibly be? And please appreciate that the majority of these individuals were fed lying flat on their backs They often had less than five minutes of mail I remember I worked in a state facility for seven years and when somebody would come Marching through the door with the cart you had 40 people to feed in 60 minutes to do it with the two staff So we had some really interesting things happening and a lot higher death rate But the people who some of the folks that you see in my slides came through that era Okay real survivors Yeah being pulled by an arm and a leg onto a gurney and then slapped on a slab And a hose down with standard procedure in facilities up until the 80s And so If you simply sat and counted the number of minutes of human interaction in any given day And I did that one time down in a court case down in a very southern state And these were children and they got Two baths or two two meals in a bath in eight minutes total for the all of those things And so our issue with a lot of folks who are very severely involved is that they don't want to respond to other human beings So they're you know They want you to just go away and sometimes to set it up to happen that way It really sounds Medieval it really does but we're talking about as early or as just as few years ago years ago as of the 1960s It's just a horrible way And that yet was a standard practice at the time wasn't that yeah See for stan it stands for you and I that was a few minutes ago Yeah, there were some of the really young folks in our audience that may seem like ancient history But trust me it was not right Fortunately today most children with complex complex disabilities are at home And they have brothers and sisters and parents and uh, you know, so when we see those individuals as young adults They're less apathetic. They're less unresponsive than the same adults with same characteristics that would have spent 10 15 20 years in a large congregate care setting Where the staff were literally taught that they could not interact with those individuals and you can't get attached So that most of us who've been around for a few decades can quickly tell the difference between individuals who've had Time in a loving family environment and those who've had you know, three shifts a day of caretakers It seems like there's been a shift also we talk about the 50s and the 60s. Uh, the norm was to institutionalize youngsters most of the time these days we've now learned through education that that personal intervention and interaction is very important to their development And oftentimes it's better to do it at home Sure And in fact if you take a look at the figures Um, we are now down to literally one Sixth the number of people in state facilities because children are kept at home Going back to the issue of assessment We didn't know how to take a look at some of the individuals that you see labeled medically fragile here And if we take a look at traditional assessment means You can see how the outcomes get real devastating for people with complex Disabilities when we ask the wrong questions and we don't really look at why they can't perform And then it's tough to hold ourselves responsible for failures and we tend to blame the person with the disability Many of my contemporaries have found it useful to think about the business of learning in a little different way Uh, do you remember a little book that came out about? Oh 15 years ago called everything I lean I need to know I learned in kindergarten Or if looking back on your education you wonder what algebra really had to do with what you're doing now Exactly So I want To to get something, you know, if you take a look at a person like Henry You tend to say this person is disabled the disability is a problem The problem needs to be fixed now. Here's where it starts to get really flaky special people are needed to fix it It needs to go to one of those places or those special places to get fixed And it can only come out when it is fixed And therefore we all of a sudden become the person is the problem Now some of my associates and I've been around for almost 40 years We talk about something called form versus function Now I have four adult children three of whom were sons They'd all graduated from high school and one day there was a knock at our front door And this young one of our friends son Todd stood there with a wicked grin on his face And he said I missus McGowan. Do you remember me? And I said, hmm, I'm not sure go into the kitchen open the Refrigerator door and bend over and I'll bet I'll remember Now no visiting teenager we ever knew could go without food in our house for more than an hour in the mode of choice That is how they did it. Usually it was directly from the fridge into their mouth Assume the position Assume the position or on the elbows Well, I'll many a time now. I'm sure you don't know what this has to do with what we're talking about But if I set a goal for John to learn to eat with a spoon I'm focusing on the form of the behavior rather than the function of that in the person's life And the function of eating no matter how you do it is to obtain nourishment. So We often hear people's needs described in how The profession generally does the work rather than You know what the outcome ought to be so we say this person needs physical therapy And that often results I mean most physical therapists when they see a person like some of the folks you've seen on the slides to go They'll look at them get glazy eyed and say, uh I don't know what to do So we have had to teach our folks to say you have to figure out what you want from that person So if you take a look at the function of a physical therapist the issue is movement And the form is Sometimes having a physical therapist do that but not always So, you know, you have to really begin to take a look at I'm a nurse for instance and we like to say people need nursing care Okay, Karen. I see we have a we have a question for most audio audience. Yes, sir your question, please I'm not sure I understand. Could you give some more examples, please? Okay Well, one of the the other ways that you can think about this is people will often say John needs a group home And you're stuck in form What people really need is a home And what the characteristics of that home are are really defined in terms of what the individual needs So if I have a youngster like Henry If he were 10 years older and in a wheelchair, I'd say I got to have a home that I can get into with a ramp I've got a bathroom that I can access and So group home may be one way But more and more we're getting at doing that in more creative ways So there were a couple of folks in our field by the name of Campbell and Bricker Who said the most critical deficiency and typical assessment for folks Is the emphasis on teaching skills of a specific form? Rather than going after functional behavior And you know if you can use your own self as an example of that I think at the stage of my life I'm not going to be working on doing a backflip on the balance beam I'd like right now to be able to go downstairs without tripping So there are certain things that are functional at a certain stage of your life other than The kind of things that are on the typical continuing and therefore that should be the measure of Your not only your diagnosis, but also the treatment and the progress that you're making along the way, correct? Exactly, okay So when we begin to look at that you start to look at some things that people are doing and So again looking at those deficiencies of form versus function is a real important thing to do and looking at What regular people need? Statements about person's needs are often our own needs So if you've got individuals who know normal development If you're into shoe tying Now I had to break it to you How many pairs of shoes with strings, you know, do you have I can't get down there anymore at a time? My shoes. I want a simple room. I wear lots of loafers now. Yeah. Yeah so All of us regardless of our level of disability shame, you know share some of the same basic needs in it And as I age which is happening to me rapidly. I see a lot of more comparisons between myself and people who don't move All of us believe me So People need homes People need somebody in their lives who care about them People need access to you know, a number of environments to learn in And so if you start looking at people with complex disabilities of having some of those basic needs And then looking at what's getting in the way of getting those needs met So our description of disabilities Are only relevant to the extent that the person's condition interferes with the fulfillment of the needs that other everybody has Exactly And so what folks with disabilities do not have in common with other folks is the independent ability To meet those needs and in most situations, that's where our help comes for instance. Let's talk about communication. Okay, okay If you're using the traditional way you'd say sally needs speech therapy, right Function says Sally needs to communicate in ways that uh people in her life can understand her My friend henry for instance couldn't say look When you put me on my tummy or you put me on my I can't breathe. Okay, so stop it already. Okay All right, let me see if I understand this correctly the the implications of what you're trying to tell me karen If a person has a diagnosis for example of a spastic Quadruplegia for example All right, what you're saying is that that needs to be treated as a functional diagnosis. Did I get that correct? Well, Let me give you a really wonderful example Our traditional assessment has a risk history of focusing on what people can't do but let's just take the term spastic quadruplegia Pretend you're going that you're in world war two and you're going after Submarines, okay, you're out there with your anti submarine boat and you are going to shoot every periscope you see The problem is spastic quadruplegia says it's about all about my arms and legs But the real issue with people with that diagnosis if it's correct even Is that it's what their head is doing in relationship to their body that tells us what they The hands and or arms and legs are going to do And so what you're going to end up doing is saying this person can't do this And so we focus on the negatives now. I'm I'm in my early 60s. I won't tell you but I'll be 63 on Monday Okay, happy birthday. And as I say, I can't do a backflip flip on a balance being whoopty who who cares I'll also never be able to paint the Mona Lisa But this focus tends to to you know hide the fact that I've got a lot of skills left And I've got a lot of things I intend to do in my life Now we've got an individual who's trying to learn to tie their shoes for instance When there are a lot of other options like we talked about like slip on shoes and velcro and You know, but if you're into this this developmental stage stuff Not being able to tie your shoes gets translated into some assumptions about what it what your developmental age is My comparison that I heard used to hear from a very famous person in our business was why can't a five-year-old drive a car And the answer is because they can't see over the steering wheel It isn't that they don't have the motor skills But if you put the label this person is a five-year-old on somebody then all of a sudden you become devalued. So It seems to me that some of these tasks that we we teach in in the developmental sequence necessary to do Whatever it is they want to do Oftentimes leads to more even complex behavior Um, it's almost like confusing the situation for them even yeah Well, the fact is that if you for instance make shoe tying You could spend 20 years working on shoe tying if your hands wouldn't work exactly If I don't have to worry about shoe tying and you just let me go on and get on to something That's more important like having relationships with other people learning to communicate functionally learning to be able to interact out In the same environments like the grocery store the you know any other place everybody else doesn't behave myself So I don't get thrown out on my ear Then if we're not careful, we're going to start eradicating functional behavior So if I tell henry that it's not okay to cry to get people to do stuff without giving him something better Then i'm eradicating functional behavior And uh, if I'd like you to look at the two people on the screen that you see right now The lady on the right is particularly Fascinating she's she's in her mid to late 20s And when she was probably 10 or 12 years old somebody she had a pattern like this with her legs together And the fashion back in in probably the early 80s was to go in and and do a little Surgery that allowed those legs to relax and fall apart She was then sent back to the facility and nobody touched her So now what you see is the left foot on the right side the right foot on the left side and hit two hips that won't bend Okay, so The fact is she looks pretty weird, but when we actually Got her into a position where she could function. She had incredible oral motor skills. Oh really? She was charming. She was I mean she was she was absolutely seductive in the nicest You know what I mean by that she I mean you could hardly stay away from her Now When if you look at her and you see a person who's really funny You're going to miss all of those incredible skills and we see that in a lot of folks That is they have you know real patchy skills Because a lot of this e atrogenic now the term e atrogenic retardation means that it was caused by the treatment So the the deformity pattern you see was caused because of not treating her after she had surgery And so we have an even more debilitating deformity than what we started with And so I want to just briefly take you through about 18 areas of functional analysis that allow us to find some of these Incredible behaviors that we see in people that are critical to the more complex behaviors. We expect out of folks And you're going to find this really helpful. This again was developed by uh, you know A husband and wife duo by the name of pip Campbell and bill brecker And they took a look at the underlying functions that were critical to the performance of more complex behavior And useful in now in analyzing why you couldn't learn Now I used to take people when they were Trying to get them to understand what this is all about and we'd time down And then we'd uh, you know time off in this way and get the head over to one side and then we'd give them some food Say how's swallowing for you now? So that's the kind of stuff we're looking for It's first of all, let's go to the first one which has to do with something that we call thriving It's very very difficult to do anything well when you're ill And many of the people that we work with have very chronic health conditions. For instance Um, I don't know if you're old enough to take a lot of drugs yet No, that's not yet that's coming but uh You know, there's a little tent here and there, but uh, your body's going to start telling you soon how it's going to get you when you're old But of the 10 most dangerous drugs in our whole You know repertoire of hundreds and hundreds of medications People with developmental disabilities regularly receive seven of them Seven of the most dangerous drug So one of the things I teach folks Uh To ask when they're doing assessments is you know get to be a broken record and what you just simply say is What's it going to take to get this person off of some of these drugs? And you'd be surprised at the answer How often we're getting Now I want to go back to our our little person here on the left Now can you take a look at Sharon here who is having the problem with left foot on the right and the right foot on the left I want you to just imagine the gi track It starts at the top and ends at the bottom right right it's 22 feet 22 feet that sometimes can be tough to get through Now the stomach for instance is a little bag that kind of hangs By one end and then moves around on the other And so it's tough for that food to get through that chain From the inlet to the outlet if Her body is in that position And if you take any person and lay them on their back after they've had a meal pretty soon stuff's going to start to come up You've got that reflux movement there and as we stop moving and as we age the same thing happens to us So hiatal hernia is when part of your stomach moves up Gastro, you know all of the ads about stuff for heartburn That's what happens increasingly as you get over 30 and happens at high frequency to the to these folks So uh, if you ever heard the expression Whenever I feel the urge to move I lay down until it passes Matter of fact, I find myself uh often doing that when I take naps Well that tends as we age to get into the same kind of lack of movement But people with the most profound disabilities have neurological impediments to movement And by that mean they have I mean they have damage to the motor centers of the brain and they get stuck in patterns that are functional But need to be replaced with more functional movement as the brain develops So the result is less movement And here on this particular second area after thriving is we're asking how much does the person move And so uh more importantly it impedes the quality of movement. So second question is How well does the person move? Um Now let's take a look at At quality of movement. Okay. And while we're talking about the the importance of movement. What have you? You know folks at home, uh, and watching should keep in mind This also applies to people who don't have severe uh disabilities as well If you stop the movement you stop function, correct? Exactly, exactly If I took you for 24 to 40 hours and put you where you couldn't move you'd probably Have pneumonia. Yeah. Yeah in a short period of time So when we take a look at the quality of movement A lot of these abnormal patterns that early kids That kids use when they don't have good movement is responsible for the shape of their body as they get older And so the joints let me give you an example babies Learn to take weight on their hands when you get up on their hands and knees They're directly working on finishing off the joints of the wrist The elbow and the shoulder When they can start subconsciously, of course. Yeah. Yeah, but if they don't do it This is what we oh, that's right. That's right If they don't get up on their hips. Yeah, I have seen incidents where A baby never raised themselves up and what they did these arms came out here and they laid and they raised their head like that Right, exactly. Okay Same thing happens if a kid does not get up on their hips the hip sockets are very shallow And as the baby skits up it starts to walk they go boom boom boom boom Form follows function and shape Follows how you use your body And so when we allow people to use their bodies and ways other than what nature intended we gary We're going to get some really interesting shapes and by and large all of these really strange bodies that you see We're shaped that way. Okay. Let me interrupt you right there because we have another question from the audience Yes, ma'am your question please do what what are some of the inherent problems? Uh in moving any way that you can isn't Any movement better than none at all? You're you're absolutely correct. And that's what we tell people Bad movement is better than no movement But you're going to pay a price for that as you get older So that uh when we're focusing on people using abnormal patterns early on we used to say oh the poor little thing They're not going to move for long. So let's let them do whatever they want to and then we started seeing the consequences of that abnormal movement Baby's born with hemiplegia with with uh involvement on one side of the body used to be allowed To let that go back like this and overuse the other side and the longer they did that the more involvement and Increased tone they had on one side of the body and then after they finished off that side then they got increased tone So when I see adults who were hemiplegic at birth I can almost see Exactly how that pattern developed. So If you're going to say any movement is better than no movement bad movement is better than no movement at all But the focus on working with people with complex disabilities is to get the best quality of movement that you can And so that's why we have to assess a how they're moving how well are they moving and how much are they moving because you've got a lot of Of issues around that in terms of getting those so is the key in the movement area Pain is the pain the central thing as far as what type and how much Or is some pain for the sake of movement itself, which can be healthy Is that a good thing in some at some time? You know, that's a huge issue a lot of folks think That when a child protests or an adult protests is because you're hurting them Right and a lot of times it can be something that I refer to as retarded room service Okay, meaning why should I do it if I can get you to do it for me? Okay. All right The same thing your adolescents will do to you if we're not careful. Okay I hope that answered your question with regard to the the amount of movement Because you can I can tell you In it from an empty wheelchair Exactly how a person was moving because for instance if an individual who has problems if they move their head Will lock themselves down and they'll use one foot to push And pretty soon you'll see wearing down on the edge of the chair So you can look at an empty wheelchair and take a look at how the person moved Incredibly rather than getting well stabilized in that wheelchair and being able to use the hands together You know, there's also really fun issues mostly it's physical and occupational therapists who look at these two areas And that's how we're looking at helping people have both good quality movement and lots of it Okay, okay. How about in the area of let's say for example oral motor function Well, that's the area. It's key to survival if you're not moving the mouth chances are you okay and The that's another area where the whole system develops the oral motor eating In this area, we're looking at how the person uses their lips their jaw and their cheeks In what we call the three stages you grab it you pull it in you move it to the back of the mouth and you swallow it down Now if you've never had the opportunity to use those structures in a good position They don't get finished now the other thing that happens is that that the individual suddenly if they've got their head back And their head after one side Those structures are going to change shape so they can't use them correctly Once they change shape through how shall I say this uh through exercise whatever can you get your The ideal shape back Through exercise or is once it's there. It's too late. You can you can often get the function back. Okay. All right I teach a lot or at least some measure of it to the point where it's now functional Yeah, I used to teach folks I The best thing to have had as an experience is regular kids and I'd like to remind people that you know Remember what your 10, you know your 10 year old did you in the grocery store to embarrass you after they did this Then they go and they do this what I call lip flipping See but normal infants develop those lips by having at them all the time It's when they you know when they're everything is on the the refrigerator door on you know, everything is is sticky They practice a lot. They put everything in their mouth. Yeah, right, but that's very functional Now if I have an individual and I have a picture of a man here Is about 40 years of age by the name of JJ. Okay. Okay. He's 40 years old He had a number of oral motor issues when we met him and at this point He's about 40 He was a very functional man in his early days But He had a lot of abnormal count and his jaw retracted and he couldn't use his tongue very well So he started aspirating on a regular basis. He could not get his lips together Because that literally changed shape if he did this the upper lip pulled back The tongue could not come forward just try some time Drinking out of that little cup of yours there without closing your lips around it That would be tough or swallowing anything without closing your lips So what he did is he adapted to that but he had stuff trickling in and We met him when we were doing a project in one of the facilities in the state We were working in where a federal judge had ordered us to get these people back to eating by mouth The doctor said no, you can't do JJ So JJ kind of rolled over beside me as I was working with another person and he said to me eat please And he begged to be included in this and it was only Two days before we left the facility the physician said to me When are you going to feed JJ that was just something new his verbalizing this this this need a very talented man again I want you to look at this guy and I want you to see that he has a label of profound retardation And he is probably only Situationally retarded he has to cognitively intact this guy. So just it's real important not to make any assumptions So let's move on to another one. We probably talk a little bit more about eating mobility was a big issue for him And we're here. We're looking at how people get from one place in one position to another this young man that you see in the The the wheelchair with all the flags Okay Um, here's an individual has absolutely no functional movement, but he could move his head forward He could move his head slightly to the right or left So they built him a piece of equipment that simply brought a little charger up that he could use with a head stylist And I'm not sure how well you can see that So he could move about his environment outside and the flag is so he didn't get hit by a car coming through him. So Um, so we're simply asking how does that person get from one position to another some people roll Some people bunny hop, which we don't like because it really does bad things to their hips But some people don't get around at all except when other people push them And so we start to take a look at that now The other issue is the quality of movement Some individuals experience Uncontrolled movements each time they move their heads and I want to show you a couple of those because it's real hard For you to take a look at how much this can get in their way If i'm stuck in one of those early motor patterns and I turn my head this way This is what happened Now imagine trying to feed yourself if every time you turn over So also what happens is that your arm rolls out And your hand opens The plate is here. Okay. Now most of the time these fellows have trained up the staff if they put a little piece of disom Which is a blue sticky thing and then a little plate So here's the person also when they move over this way the jaw deviates out The tongue goes with it. Don't I look attractive when these? Okay, off she goes. So the person when they move their head you see to the opposite side This is what happens. Okay, so they're going to spy that thing and catch it on the fly Gotcha. Gotcha. They're using an abnormal Primitive pattern and they're going to make the best out of it But they're going to pay some consequences because they also learned some time ago If they want to get their hand up there where they can use they're going to have to go back like this Now the jaw is retracted And then they come forward and clamp on it and scrape it out That's how you can use an abnormal pattern to move and it is very important for us To analyze how that's happening so we can give them a more functional way because the more they use this and the longer they use this The more trouble they're going to be in eventually So if every time you look up Your body stiffens Now you know Try to keep my dignity here if you go up like this and you do this because that's a pattern Here's one of the things you learn to do Now your head goes this way this way this way You trap your head with shoulders And so I can turn my eyes this way in this way in this way in this way, but nothing else Happens so people with cerebral the term cerebral palsy It refers to a group for whom, you know, this is a particular problem And I remember one time when I was consulting in a group home someplace and the guy said to me, you know The funniest thing every time if we scoop the food and bring it up to here Then this guy will bring it to his mouth and take it off, but we can't get him to scoop You know what the problem was every time he he looked down he lost it So the issue was not scooping the issue was getting him stable enough in sitting positions so that he could Look down without losing his postural stability. You know, I never would have thought of that Are there some other examples of how abnormal posture can interfere? Let's say your vision for example There's a big correlation between the ability to hear the ability to see Now there's a lot of real high incidents of problems with hearing loss and cerebral palsy all by itself But if you are over here and your mouth is locked open Then a lot of time you're drooling into your eardrum You worked with a nurse practitioner from florida who said That for the most involved folks that she evaluated who drooled a lot She never had seen a normal pair of eardrums And this would be especially true of those persons who are lying down all the time and turn this okay, exactly And if your mouth is locked open And your then it becomes dry And if you're an obligatory Or your mouth or your nose is stuffy. Have you ever noticed when you've got a cold how hard it is to taste? It's just because really taste is limited to sour sweet bitter and those kind of things Smell is what really adds the essence problems with muscle tone and movement affect all of these things We used to have some really fun ways to test for that Because you know if you look at sensory status on people with complex disabilities If you have a lot of visual difficulties And you and I can identify with that What i'm telling you is that if you've got The problem that you're locked like this and you can only look this way or this way or this way or this way Visual range is a real issue If you have a sensory problem called an astagmus where the eyeball I remember talking with a teacher in a public school one time and she wanted somebody to track through an arc And here was an individual whose eyebrows Said that's going to just get you eye closing because it it really caused the person a lot of sensory disorientation So he said bring it here and take it away bring it here so the person can focus um The other issue has to do with your sense in space and your ability to feel things I had chemotherapy about a year and a half ago and i'm here to tell you that Other than the fun of the process one of the side effects I ended up with was something called peripheral neuropathy, which we see a lot in people with diabetes So my hands and feet are numb And uh, the other thing that happened to me as I was in the shower and closed my eyes and I fell over Because I had lost my My my sense in space. Okay your personal gyroscope was exactly gone there. Yeah gone Now I learned to adapt to that and that's the same thing that people with these kind of neuromotor disabilities adapt to I for instance plant myself up up against the wall in the shower So that I can find myself in space with my eyes closed but a lot of folks will compensate and But balance is a very difficult one for somebody who doesn't walk To compensate for sure. It's also a sense that tends to deteriorate with age So as you get older standing on one foot becomes a little more of a problem very difficult. Yeah Yeah So in individuals with damage to the motor centers the brain stimulus to the joints And the ability to sense one's position in space And protect oneself and that's the last of the developmental skills So that if you take a dive on the ice here in maryland, which we don't have in Atlanta where I live rub it in. Why don't you yeah, right? So you're going to fall forward and you're going to go out to catch yourself Some of our folks have splinter skills in that area until they finish them off They don't have the kind of balance they need so we take a look at all of those things because once you have one of those You can learn the rest of them So if I can if I can put you down lying and displace you like this and you catch yourself like that Then I have the capability of giving you that skill in a number of other planes So the next one we're looking at is something we call manipulative the ability to use your hands Now developmentally that comes about When the baby gets up Off the tummy Onto the hands then they come back and forth and they are developing that sense So when I see people with hands like this What I show people how to do is to a get the hands open and then get some Yeah, I had a wonderful physical therapist for nor from north georgia that I worked with She had a little boy with cerebral palsy in public school who wasn't writing very well And she so she put him on a piano moving program Pushing the piano pushing the piano and his handwriting skills in Got better in just a couple of weeks Let me ask you a quick question because you said that when for example limbs are locked into a certain position And you have to try to teach them the opposite in order to be functional Is that a painful process in itself teaching them that new way to hold themselves so that they can help themselves The reason we have some clinical specialists in our field Like the person who works with hands most often is a is a clinician called an occupational therapist By and large we we want to get those hands in a position where we can get The hands and palms open You so after you've been doing this for a while you start to get pretty sensitive about there's a difference between A grunt and a screen You know the difference, you know, the grunt is like how you feel during a sit-up A screen is we don't want to do pain if we do pain. We'll never do it again Because the person will turn off but grunts your progress grunts start well Or at least let you know something is going on that you're moving the right direction remember grandma's law Spinach before spinach before ice cream. I'd almost forgotten that one. Yes, I do Well, a lot of times we don't have we've never taught the individual to respond to reinforcement A lot of us will do like I'll do anything For ice cream at night I'll walk an hour and a half to get my ice cream at night But if I've never been exposed to potentially reinforcing experiences that's not going to happen Gotcha So if I've never tasted pistachio ice cream for instance, I'm not going to work for that either sounds terrible But Once I've tasted it's really quite delightful Now there's another issue there if you give it to me 20 times a day my enthusiasm Will probably wane And the problem we have with a lot of individuals with complex disabilities is that they have never learned to respond Or work for reinforcement. Why should they? All I have to do is grind a couple of times and you're going to come do it all for me And it's really tough because these folks sometimes will have such limited behavioral or experiential Reptors that they have a lot of trouble and that's again where I'm talking about the retarded room service issue I have a friend who talks about learned Helplessness the ability for me to just let the world happen to me So so if I think I'm hearing you correctly people can be taught to work for reinforcement. They can indeed they can indeed and Then the next area we talk about that happens and you you probably don't even Notice it in your own small children, but it's not real Important it's the ability of the person to use objects to get something else I used to do a lot of work in Canada. I remember being in a group home with You're talking, you know give me You know ask me what time the train leaves. I'll tell you how to build a railroad And so I'm chattering away in this young man in a wheelchair sitting right next to me I had a cup of coffee and rudely he did not So he looks at my coffee cup and he looks at me He looks at my coffee cup. He looks at me and I of course am yattering away and I ignore him completely So pretty soon he grabs the tape of cloth and begins pulling my coffee over to him. Okay Now if you didn't really know what you were looking at You would have missed this very advanced intellectual skill in this young man because he had a label of being profoundly retarded And not having enough brain cells to rub together So you have to be pretty sensitive to the kinds of ways that people get things done There's another intellectual thing that tells us that more is going on with people And that's the term that you if you you don't have teenagers yet. Do you not quite? Oh you have so much fun compliance That's a you referred to by some people as a willingness to cooperate Non-compliance is a pretty normal stage of development. You see it in three or four year olds You see it in 10 year olds And you see it particularly in 13 to 15 year olds Mean is whatever you want us to do. We'll do the opposite right And so one of my cohorts used to talk about something called paradoxical intention That is getting someone to do something by telling them not to do it. Isn't that reverse psychology? I guess it is. We have to put an extra parts in any of that but uh The thing is that some people Need to be just different about it But if you don't recognize that in order for you to do the opposite you have to understand What you want from somebody exactly you don't give them credit for what they're actually doing Okay, we have a question from the audience. Yes, ma'am your question. Yes Are you saying that the presence of object permanence means that the person's ready to speak? Yes And I think we're going to get there at some point in time, but I uh, also have a friend Who is a psychologist in Omaha, which is where I worked for a long period of time and she was working with a uh young man And staff used coke as a reinforcer for him and they when when he wasn't doing anything they would put it under his chair One fine day he went after it and they were going oh worse thing happened He was down and she said oh no She said he has object permanence and that means he now recognizes that the object continues to exist after it has left His you know immediate place and that's when children need to use symbols That's when they start to say well mom still exists even though she's not in the room And so I have a symbol for that So recognizing the the person's ability to to know that something continues to exist after when we no longer can see it Is a real important cognitive step Thank you. Okay The next thing that we're doing is something we call social responsiveness That is the person's willingness to seek interaction from others And I want you to think about that because for a lot of the people that I worked with who are in their 20s 30s and 40s Social interaction was never a positive experience for them as a result. They're in a shell now They they won't respond to anything or anybody almost or my little friend orlando that we talked about with a hip issue Was a really good example of that and he was introduced to his new wheelchair Which of course he would like to have told us what to do with it But when he was in this was a challenging piece of equipment that it is put him in a position where He uh, you know was sitting on his hips. He had his feet on the floor. He had his back erect Um, he was using the same behavior by the way to express his discontent for this piece of equipment And one of the things we learned is if that uh If he extended his head before he did it You just I used to say to people now the last time that you had a case of monazumas Revenge, can you remember what your head was doing just before you up check exactly but it always goes into extension So what we learned to do was gently to place his head down Because if he could not extend his head he couldn't do that because there were two things that we wanted him to learn You cannot do without people in your life. Okay, and you're going to do this particular thing That that movement of the head was that a painful process in itself? I don't think I mean when you talked earlier about You know locking in as a way of you know functioning Sometimes you don't they don't unlock for this young man. He had essentially normal movement He did not have the same kind of which was a big advantage What the tragedy of his hip surgery was the fact that he didn't need it. He was a teaching tool And so that's a real important thing to keep in mind is that if you were a person who was devalued 30 years ago Your big contribution in life was to train residents in some places Whether you needed it or not it's tragic. It really is But what we learn about folks is that When a person want a lot of the the abnormal maladaptive behaviors that we see Will come out of people who are in so much pain that they want to be left alone and so Body rocking if you watch some people who do that or hinge There's a lot of really interesting kinds of behavior and the message is Go away And if you don't go away and leave me alone, I'm going to accelerate and I'm going to make it worth your while To get out of my space So that's not acceptable So we have to find ways when we intervene To make human beings reinforcing and that takes a lot of creative team building because Lots of times it takes a year or two to you know, to allow the person to bond to other people Those of us who are who are who are now professionals like yourself We've certainly seen people who as you mentioned will do the rocking the constant rocking thing And I know personally I interpreted that as something that was an uncontrollable movement They couldn't stop themselves from doing that. What you're telling me though is that's her way of communicating Leave me alone. Yeah, I ran into a young woman in a facility down in south texas about 20 years ago I'm going to show you what she did It looked like she was trying to poke her eyes out Later figured out that she was having a little television because there was nothing going on in her space If you sit down and you press back on your eyeballs You're going to get a very pretty lights all kind of colors Exactly right And so There are a lot of people who have some interesting repertoires But I hate to break it to you, but normal people do a lot of really strange things when nobody's looking the difference between a lot of us Do a lot of funny things So it's important to understand that those kind of behaviors usually have communicative intent That they tell us something and once you get the message Then what your mission is is to give that person a more functional means of Communication and tell them or help them understand How we can do that so that that probably among anything we do with people is one of the most important things We can do is to figure out what they're trying to tell us Now when we're getting to work on functional communication, there are some signs that tell us that people are ready like the you know understanding the relationship Understanding that something continues to exist But if we have people who can who can model a sequence of movement And if you remember, you know very young children if you do patty cake patty cake bakers man That's really when children are telling you if they can take instruction to model that vocal imitation is coming quickly behind it But we have lots of things that folks can do to do that And uh, but lots of different techniques Well, also lots of different ways that folks can communicate. You don't need them. You don't need to vocalize. Okay There's technology is getting pretty sophisticated There are 10 big things we look at i'm sounding like more and more like dr. Phil aren't i 10 Need a little more texas playing there 10 top approaches for functional assessment and let me talk to you about these in terms of Importance the most important thing for me is to a Recognize that no matter how bad the person looks there's a real person in there. Okay Regardless of the level of disability if you don't believe that there's a real Human being you'll never go any further Young man that you see in the picture right now is a guy I worked with down in arizona He's in it. You know, he doesn't look very old, but he's actually in his late 20s to 30s and he um, he just was unresponsive. I mean We noticed the therapist and I that he had a real shallow respiratory pattern And sure enough we did some what we call respiratory facilitation to get this young student Young man to breathe deeper and deeper sure sure his eyes fluttered and he came to oh, that's incredible You know aren't there some people that they're just not really capable of what we'll call Active treatment for example when you say that someone doesn't uh answer you or they don't utter a word There are a lot of people I who have a tendency to think I can't reach that person. They are non-communicative, right? So let me not even try. Well, let me well be but I can't Function as a clinician that way I know that there's somebody home and when they don't respond. I assume it's my problem Okay, find another way to communicate another way try another way and or not if but how And I if the clinician or the the professional and or the folks who work with the person assume the responsibility So when the person can't learn It's because the program fails as opposed to the person not being valuable You know We do a lot of evaluating from more than one point of view. I like to call it assessment by messing around so you take a person who Get on the mat and you start fiddling and let's say what would we happen if we did this What would happen if we did that and we get some of the most interesting Things and responses out of people So you're trying to discover what the person can't do can do when the rules are changed And particularly when many sets of eyes are looking at that individual from different perspectives Another question from the audience. Yes, ma'am your question. Yes, I was wondering How do we learn to assess some of these really obvious things? Well First the biggest suggestion I would give is trust the people on the front line Trust the folks who spend the most time with a person if you want to know who knows the person Ask mama I hate to say it that way But the fact is that most of the folks who run on the front line are getting discounted people don't recognize What they're doing, you know, how much they know about the individual I remember one woman that we that who had had a traumatic brain injury They said she was in a coma and this relates to what you said as well And the direct care staff person in the meeting went, you know, like this and this and and the guy who was facilitating said You don't seem to agree with that and he said and she said, you know, it's really interesting But on my shift she opens her eyes. She puts out her hand to have the thing yet And so he's the facilitator said I wonder how come that's happening Well, everybody who was coming at her was coming at her in white coats and her experience with her traumatic brain injury Was that during the period of time Immediately following all of these people with white coats were stabbing her in the back stabbing her in the leg Yanking her around and she says I know how to fix that. I'm gonna play dead And that's exactly so it was a fear factor It was a white coat set off a fear factor and she just shut down does it for me So Yet, uh, I have white coat high hypertension When I go into the doctor's office, my blood pressure goes up 30 points You're gonna see my kids when it's time for vaccinations And then the the next question we asked by the way are skills different in one place than they are in others And I'm gonna go back to another corollary of grandma's law when grandma says he never does that at my house And what you'll you what you'll hear when you're talking to folks at the day program as opposed to the residential program They'll say John never does that here or john can do all of these things here and not there So there are lots of folks with very complex skills that they will produce in some situations That they will not produce in others and that's again Can cause a lot of staff conflict It's called You know if it weren't for you or all of these kind of little games But if you'll realize that there's something going on in the one space That isn't that gives the person permission to perform or causes the person to perform in ways We don't like in another space. So It it's really helpful that we we set aside the blame when we're talking about and just trying to figure out What does this person really know how to do? Yeah, it seems to me it puts a lot of pressure on family members to pick the proper facility Proper treatment proper care to bring out the most in the individual and it puts a lot of onus because the the The issue between behind the interdisciplinary process Which is a big deal in our business Is that the The hole is more than the sum of its parts And so we together Have much more knowledge than we do One plus one plus one plus one and that's a really important thing now And that's why I want people to remember just because a person has a label of profound retardation Doesn't mean that they can't do you get you to do things for them that they could learn to do for themselves And so what I want folks to hear is that uh, I found it really functional And I think I have a picture again of a young woman who Could essentially do nothing on her back And this was a young woman who uh was in a fire and she got a trach tube And so when she sat by herself She would do this and could do nothing essentially But the therapist got her on to her hands and knees at one point and she began to weight shift and do all kinds of things She could move independently. She could sit back on her heels and hold her weight And it was just wonderful So next question would be what supports does the person need To do valued things or access valued environments And i'm going back again to this young man who was going around in the little wheelchair with the head control He can go essentially without help Anywhere he wants to go and did in this particular this was a program up in massachusetts Now this man also had a label of profound retardation I had another person that I met in a florida facility who was in a cart a motorized cart here All you could see when this guy came around the corner. It was a set of hairy eyebrows And there was a little finger poking up and the kai came by and gave us this Tooled on down the hall and disappeared. He had the most bizarre looking chest. You'd ever seen it, but somebody Discovered him and gave him the means to get around him So part of my thing is, you know, a lot of people have many more skills than you think they do somebody has to discover you and Very often it's our ability to help the front line staff and our families to feel valued at team meetings For instance, if you take a look at a group of 10 or 12 people together and there's a psychologist and there's a couple of therapists And there's a nurse and there's a doctor Then there sits the so-called as they perceive themselves the lowly parent and the lowly direct care staff And they feel like they have no value in that system when in point of fact they have all of the best information So part of the process of getting the best out of people with complex needs is to help those folks with all of the good information to feel comfortable about putting it forward so that We we can come up with a lot of really dumb programs and we need to Be prepared to be told by the family And the front line staff that the person already knows how to do that And I'll give you an example from the slide There this is a young fairly young guy. He was really in his late teens but He's on phenobarbital, which is a drug we used to give for seizures Uh one of the things that I've told people when I say what's it going to take to get this guy off of this drug Is that the first thing that happened to him when he came off the phenobarb is that the drilling stopped His lip started moving and his tongue got back closer, you know to better shape And he was able to use his oral motor skills in a better way Interesting Yeah And notice though right here that if you look where the the clinician has her finger right to the side She's giving him a stimulus And what the normal tongue will do then is move in that direction Can you see that his tongue is doing that? Sure. He had a normal normal normal skill in that area That was the drug that was getting in the way So that it was almost an exercise for the mouth. Yeah, exactly Exactly, but what remember when I was talking about a lot of splinter skills that people have Right Uh, well, uh, this is a 50 year old man Here that I worked with again down in south florida And the staff were having all sorts of issues with him at one point I had met him about three years before he had a trach. He had all sorts of problems He had a gastrostomy tube took him back to eating by mouth got the trach out got him down there And somewhere along the line, they didn't get him You know, I can't tell you how important it is not to sit like this Right, right So in the first slide, you could see his head going all the way back like this So I'm in the second shot. That's me getting him, you know a hammerlock on him And getting that what we call the three-point jaw control I can see this hammerlock Yeah, now look at the last picture that was taken about five seconds later. It suddenly occurred to me My god, he can do it himself It always could apparently always could always could so what was the stimulation you provided there in that five second window that Got him to go from picture one to picture three Well, actually by picture two we'd gotten him up into a good functional sitting position So feet on the floor sitting on the bottom bumps posture just like you are just posture Weight bearing on his forearm so his head could come up and then we just pulled back and he could pull out Independently and he had an independent consecutive swallow Don't you have to be awfully savvy about normal development in order to be able to do this to be able to recognize those kind of things Experience helps But that's also the interdisciplinary process helps. That's why having a number of people look at the person. That's what we call Messing around Okay assessment by messing around Yeah, and that's what you do is you get your hands on the person you get the person on the mat You start to take a look at how that person controls their environment Everybody controls their physical or their social environment in some way And when the lady asked the question before if you're alive and not in a deep coma Then you have some way of getting the people in your life to do what you want them to do Or not what you don't want them to do more likely And once you figure out how they exercise that control, that's where you start building Most people have more movement than they get credit for they have splinters and a lot of folks have lost movement You have to be prepared by the way to feel stupid a lot of the time along the way I have been outdone I can't tell you how many times by persons who are supposedly profoundly handicapped They're testing you. Yeah, because it's really what we're going after is to identify the developmental obstacles If uh, if we have our friend Orlando with the jag jagged thigh bones I mean it took some time But finally the therapist figured out that if they lifted and transferred him putting weight So that they pulled those away as opposed to just you know He started to trust people again They also then figured out how to get those a little jagged things to round out by putting some pressure into those thigh bones Against the socket they were supposed to be in This little boy finally bonded with a wonderful special ed teacher that he had you know that he Got to simply adore in the new setting he went to And we knew that we were out because after a while he started to vomit when she left It was just you know a break your heart The ninth thing that I think that is really important is to find the passionate Relationship in the person's life Everybody has somebody who cares about them someplace And we learned that the hard way when we used to move people without considering who might what kind of bonds they might have Particularly in areas where we told families to go away And then we'd get these really quick deaths What we found out is that if you don't If you break those bonds without making Some compensation for that in another environment You're going to have a person who's who loses the will to live so We have to ask the question The staff will say it often like johnny is mrs. Johnson's baby, which we which is a way we'd prefer them not to say it But the fact is that there's somebody there for whom and see our folks will usually perform for some person There was a wonderful woman, uh, that i met that, uh, we were trying to get gastrostomy tubes out of people And this person had had their g tube for two years. Now, you know, that's a tube directly into the stomach And We said he's eating completely by mouth. Why she said well only mrs. So-and-so can get him to drink And so he said well, what is it she's doing? She was a tough mama in terms of the when you hear the definition tough love I came into the field when you weren't allowed to be Get too close to people. Exactly. You know, I thought it was probably, uh Inadvisable for caretakers to really get too emotionally attached. Uh, maybe i've been watching too many movies You know, or they really didn't get involved. It was a warehousing Leave them to themselves lock them in a room leave them alone just slide them a meal And you didn't want to get too emotionally close. Uh, to the patients Now, you know, it's the opposite way to go. Try it. You cannot be in the business. You get better results by getting Attached emotionally involved. Yeah Well, I've been doing this for almost 40 years and i'm here to tell you that if if you are not touched And absolutely blown away by some of these people. There's something wrong with you I mean, it's it's I would not give up my passionate attachments for anything You know, the last thing we probably need to talk to you about is The question that we asked about some of the silly things we make people do I had a little girl who had a pelvis that was all the way up in her rib cage Um, she couldn't breathe and they had her on a hair brushing program hand over hand And we used to ask the question if the person can't do this will we have to hire someone to do it for him or her Good point. So the question is if she can't breathe So the burning question for her was what is it going to take to get her to have that pelvis out of her ribcage 24 hours a day because that was the reason she couldn't perform And then get away from some of the silly stuff you give Staff on the front line some of these dumb programs and first of all, they don't they know they're stupid And number two, they don't make a difference in the person's life. So if they know they're stupid karen Why do they still do them because they don't have courage to say is this the dumbest thing I ever saw They're following orders handed down from somebody else or going through the process and they also feel devalued in the system Okay And another way to get at the same issue to get at what's really important is to ask the following question And I've been teaching this probably about 15 years and it's something I learned from some canadian associates of mine Who at the beginning of the process would say At what is this person at greatest risk for if we don't change his or her life? and It Let's take our little friend orlando again as an example If he was continued to be successful at getting people to stay away never touch him never do anything He was losing weight in an incredible rate because he was using the vomiting to control his environment because somebody had to Touch him a several times in a day He's probably going to die from nutritional issues related to that particular behavior So it's really important to get at what that was all about get after him And then understand that there are some things in life that you really have to do Right It also helps to remember that That for me, uh, I I just I stopped smoking eight years ago. Congratulations. Well, I was also fat Fat smoke breathing fat breathing So I had to choose one because there was no way I could do both of those things So if you're going to try to do those two things simultaneously, you're going to fail So sometimes we think we have to have for people with disabilities a program and gross motor and a program and fine mower and a program in This and this and this and we never go after the central issue in people's lives so we can figure out what it is that keeps them from doing what they need to do and I like to remind people that uh when you're doing problem solving 80 of the problem is figuring out what the problem is and once you figure out what the problem is the solution Is usually pretty simple So if weight loss is more important, you'll do that And then I talk about something I call creative lifestyles And when people talk about doses of therapy for instance, I try to say now I'm going to put you on three half hour periods of diet a week And I'm going to ask How much weight are you going to lose? If we talk about therapeutic lifestyles, I'm going to clean my cupboards out of all of the offending objects I'm going to increase my interaction. I'm going to I'm going to do something that Is not doses of stuff. It is making what is a real life The situation where there are no smoking cues You know, do you hear what I'm saying in terms of Helping people change their lives and we've been flinging little doses of stuff At folks as opposed to creating therapeutic lifestyles for people and so I want to talk about some other basic guides for helping I used to talk about something we call passing the dead person's test I bet you can hardly wait to hear this one Knowing you there's probably just a little twist of a sarcasm involved If the dead person can do it, it's not an objective So okay, I'm going to take a person 30 minutes postmortem They're going to be able to tolerate a sideline position for years So I get real impatient when I see folks doing the person will tolerate this and tolerate that because it doesn't involve Anything active on their part? Exactly So positioning per se is not an objective. It's usually condition under which something else can happen So you're not going to eat standing on your head. You're probably not going to throw a basketball lying on your back So when we look at what people can do We ask What can this person do in this position? And if we want to do this, how can they handle the antecedent or the condition under which that will happen? number two is getting a real life and The question that we want folks to ask is what would a person of the same age and sex be doing Right now if they didn't have a disability I had a my friend JJ. I think you saw him the 40 year old After we got his tube out and we did by the way get his tube out I checked up on him about a year later and he was out with his buddies drinking beer in a bar That's what 40 year olds do occasionally. Okay. All right Um, so if we pay close attention to the antecedents that is the antecedent the behavior and what happens after We can more often create conditions that are much more sophisticated in terms of the behavioral outcomes we get and It doesn't take a rocket scientist to figure out that if you're sitting down here on the small of your back or hanging by your armpits It's tough to write a dissertation And the last thing I think I really want people to understand is that Well, not the last but the next the last thing is about demystifying clinical skills I give a lot of stuff away I teach people how to do a lot of things that traditionally are owned by clinicians And I usually say to them because they get real nervous and I say What is the worst thing that could happen if you didn't do this, right? If the answer is nothing So if I teach somebody for instance to flip lips ahead of mealtime and the mission is to up the tone in the body And it doesn't get better right Then why not try it? Sure And so there are a lot of things that we can delegate to front-line staff because we're going to create a therapeutic lifestyle We're going to want to have people doing lip flipping ahead of every mealtime You're not going to get an occupational therapist to be there all of that time So you've got to make everyday activities therapeutic. I can range the shoulders at bath time I can have a person abduct the arm instead of yanking it forward and I can I can assist that person keeping range So they're you know, you can take a look at a whole day And figure out, you know, how can we make this so that it it makes this person acquire some functional skills? And lastly What you're going to assume is that the program doesn't work It's not the person's fault. It's your program That's at fault And so you do it again I was raised up in a program by the way if we didn't have Progress of about 20 to 30 acquisition in two weeks. We had to rewrite the program But oftentimes don't clinicians get so locked in and so Straightforward minded as far as this is the way it says in the book This is the way it should be done. If it doesn't work, then there must be something wrong with the patient as you said Yeah, well, they blame they do have a tendency to feel frustrated Because a lot of clinicians haven't been trained to work with this group of people But it's so it becomes easier to blame the person than to blame or to say, you know, I I may need to get some help here Uh, I wish you people would appreciate the fact that physical and occupational and nurses and physicians and all of those clinicians get No training about working with these individuals in their basic preparation And so we all those of us who have any skills at all learned it by the seat of our pants And so it's okay to say I don't know if I know how to help you But I sure would like you to give me some information so I can at least try Sounds like we've come a long way in the approach when dealing with the developmentally disabled Do you know that in 20 or 30 years ago when you've been around as long as I have it's hard to remember But I can remember telling people that of all folks with cerebral palsy 25 of those individuals will be normal intellectually and 75 percent will have mental retardation Now we say Of all people with cerebral palsy about 75 of those people will be normal intellectually and 25 percent may have some cognitive problems I wonder what the difference is. Yeah, exactly. It's we've changed our Ways of thinking in our approach, which is a very good thing. Yes, it is Karen. I can't tell you how much we We appreciate and thank you coming in and for this again on your subject matter It's been very interesting and very enlightening and and very educational as well You gave us a great deal of valuable information. It's my pleasure to be all righty And I just want to remind folks as we conclude this program Once again I want to thank Karen for being with us and also remind you that If you want to see this program you can see it in its entirety Because this broadcast will be available for up to one year from this date All you have to do is go to the website cms.internetstreaming.com again That's cms.internetstreaming.com and be sure to join us for our next broadcast It's scheduled for february 27th when we'll discuss dementia. Thanks for watching for now. I'm stan stovall. Have a great day everybody