Please stand by for real time captions. >> Good afternoon. My name is Lisa Zimmerman and I am with the Rehabilitation Training Institute in Albany New York. Thank you so much everyone for joining us for today's webinar: Pain in people with developmental disabilities. Module to the assessment of pain -- These professional development webinars which are presented in conjunction with RRTI and The Lewin Group for social workers, counselors, registered nurses, and other healthcare professionals are supported through the Medicare Medicaid Coordination Office or MMCO in the Centers for Medicare and Medicaid services or CMS to ensure beneficiaries enrolled in Medicare and Medicaid have access to seamless high quality health care which you full care of health services in both programs.

To support providers in their efforts to give more integrated, coordinated care to Medicare and Medicaid enrollees, MMCO is developing technical assistance and actual tools based on successful innovations and care models such as this webinar series. To learn more about current efforts and resources please visit Resources for Integrated Care at www.resourcesforintegratedcare.com for more details.

A little housekeeping before we get started: your microphone will be muted throughout the presentation; however, there will be a question-and-answer portion at the end of this webinar so if you do have a question, please click the “raise hand” feature on your control panel at the designated time and you'll be unmuted by an administrator. You can also type a question into the chat window and an administrator will ask the question out loud during the designated time. There will also be poll questions throughout this presentation. A window will appear with the questions and you can submit your answers at that time. At the conclusion of the webinar, a tab will appear in your browser prompting you to complete the evaluation survey. It is required that you complete this evaluation survey in order to receive three contact hours each from the Michigan social work continuing education collaborative NH Nurses Association, National Association for social workers, and the National Board for Certified Counselors. If you're unable to complete the survey at the end of this webinar, you'll receive an e-mail tomorrow with a link to complete the survey at that time, if you have not already done so.

So at this time, I’d like to introduce our instructors: Dr. Eileen Trigoboff is a clinical nurse specialist in a private psychotherapy practice in Western New York and is director of program evaluation at the Buffalo Psychiatric Center in Buffalo New York. Dr. Eileen Trigoboff has a doctorate in nursing science and is board certified in four areas. As well as being a national and international speaker and consultant on a wide variety of clinical research and professional topics, Dr. Trigoboff is an author, co-author, and contributor to 14 books and dozens of journal articles and serves on an editorial board of several professional journals. Dr. Eileen Trigoboff is a partner in the independent research group and provides expert testimony and reports across the country. She is active in community service, including clinical settings and family support groups. Dr. Daniel Trigoboff is a clinical psychologist specializing in technological assessment and treatment of chronic pain syndromes. He has also worked extensively in general psychology and has expertise in capacity determination, and behavioral treatment planning with developmentally disabled people as well as with other patient populations. Now we'd like to begin. Thank you.

Good afternoon, everybody. We are here for people with developmental disabilities and today we are going to be talking about assessments. But before we get to that, just a reminder we are here for about 70 or 75 min. -- take a 10 or 15 min. break -- then we will go for about another 75 or 80 min., and there will be time at the end, 10 or 15 min., for any questions that people may have. –

So today's topic is assessment of pain symptoms. If we’re going to be able to adequately treat pain in developmentally disabled populations, we have to be able to assess the current ongoing status of their pain problems. And we are going to be needing to monitor a person's progress in responsible pain treatment interventions and monitor what's going on with the chronic pain syndromes over time, in order to know whether what we are trying to help them with is actually effective or not. So we are going to be covering a number of topics today. We will cover a couple of pain scales that can be used by people in the developmentally disabled population and considerations about proxy reports or data-gathering let’s say from other people other treatment providers coworkers and supervisors other staff members. We will be talking about some important considerations about verbal and vocal indicators of pain. Including consideration that will have relevance how bad it might be and under what circumstances do they need further confirmation. Under treatment of pain symptoms is a frequent occurrence unfortunately in the developmentally disabled population in general. Even more so when development disabled person with whom you're working with is nonlocal and nonverbal doesn't say much -- doesn't communicate much orally. We will be reviewing today some more behavioral and physiological indicators of pain. And symptoms. And some syndromes specific indicators of pain so what do we expect from a different varieties of developmentally disability -- many times we are working with DD people who also have a psychiatric difficulty so for example we might be working with a down syndrome person a person who has down syndrome is also clinically depressed and then that person might go on to develop pain problems. So we will be talking about some assessment strategies for working with people who have both developmental disability and import psychological problems in order to be able to properly assess the pain problems. We are going to be talking today about staff our approach to pain problems specifically what are some of the ideas -- attitude feelings we all might have working with DD people who have pain problems that could affect the way we do the assessments. We need to be aware of that because if we are not had the chance to reduce the effectiveness of our assessments and we will be discussing the issue of resilience response to pain symptoms -- how we look at resilience in general and what influence do you think that has been able to do in effect of assessment for pain problems and we will also cover today the extremely important topic of documentation.

One of the pain scale options that we have is the black and the plaque was originally designed to track people's postoperative but it specific and very relevant for this group of people who may not have the same verbal skills or the ability to express themselves to interpret what's going on inside their body verbally on the outside of their body. And all of those features can be very useful for us and on the outside of the person if you take a look at a pace do they have any grimacing do they have any jaw tightening do they have a scrunching up of their face that's not typically part of their facial expression that can be very helpful in determining if somebody is having a painful experience. Was going on with her legs some people when they are nervous or when they are anxious or when they're agitated will move their legs and they

can't get their legs comfortable so they will cross a broad cross them and they will pivot them in a certain way so it really is very helpful to take a look at what's going on with people's legs the positions are holding the men are they bending their knees what's going on with the joined at the hip -- what's the general activity level -- is an agitated level -- is it one that shows disbursement of energy without a focal point so they are moving things around and they are kind of touching things but they are not really getting a lot done it's an indication of anxiety also can be an indication of a depressive reaction to what's going on with the activity levels very important. If somebody is curling up in bracing if they're not moving very much if they are not opening themselves up to certain experiences like if somebody walks into the room they would normally look up and see who it is but if they're not even doing it kind of activity they're pulling in of themselves -- you need to know your client know their usual activity level to read or interpret the plaque appropriately. The cry is more for a pediatric but it also is good for adults who have developed DD it out with expressing themselves not necessarily through crying and tears but are they movements that make them expel air in a certain way that can indicate a level of pain and how console of all is the individual with pain that they're having. Very acute pain in many chronic pain syndrome you cannot console the person. You can teach them over time if they’re having chronic pain how to adapt and adjust and make themselves more comfortable and do some self-soothing but the console ability factor is important to keep in mind.

Another pain scale option is the noncommunicating adult pain checklist and this was adopted from a 31 item and a caregiver inventory that was original views with development DD children. So it has our eight items that occur in six categories and now there are total of 18 items. The six categories are vocal reactions -- emotional reactions -- facial expression -- body language -- and physiological reaction. Vocal reactions work for example we could moaning her whining or emotional reaction might be observation unhappiness agitation facial expressions would be furled eyebrows are raised eyebrows turning down of the mouth and not smiling -- body language would be moving more or less or oversaw holding part of the body stiffly -- effect of reactions would be for example gesturing to 12 part of the body that hurts in a physiological reaction could be a change in the rate of weeping or change in facial color. Now, there are 18 items but it's interesting to note about this item and the pain behavior scale which we will talk about in a minute, if psychometric lead validated normative scores inventories -- so for example it is not the case data across different facilities and circumstances if a person scores nine or more than we know they are in pain but the they score it or less not committing adult pain checklist we can assume they are not in pain. This is rather an inventory that should be used as a guidepost to look at different possible areas of symptoms and of course the more the patient seems to have the more likely it is they’re having a problem with pain. Over time, when we use instruments that don't have psychometric validated normative scores it’s possible to develop a baseline score for each person or working with. So how do they score on the noncommunicating adult pain checklist when we think that where pain problem they have these will be good control -- and then if we see deviations from that that might give us a hint that the pain problem is worsening or we want that develop. Pain behavior scale is a 10 item inventory it’s an older instrument so it's perhaps not quite you so much in modern-day but still reasonable one to use. And we are looking at 10 different behaviors that might indicate pain on the pain behavior scale focal, making sounds, verbal or same words, time span Lang down, grimacing, changes in posture, changes in mobility,

making gestures that would seem to indicate pain, the use of supports and when moving or standing -- the inability to sit or lie down in a relaxed position, and use of pain medication are factors that contribute to the score on the pain behavior scale.

For the scale actions that we wanted to put out there for you is the pain detect questionnaire PDQ -- the leads assessment of neuropathic symptoms and signs -- which is called the LA in an alley and SS in the pain visual analog scale and it's been very helpful and we noticed with a variety of different kinds of development will disabilities is that sometimes people really need something visual and sometimes people need a story to go to -- the visual the pain visual analog scale is something I'm sure you've seen a number of times. It has facial expressions that show no pain down to the worst possible unbearable excruciating pain. Well is helpful in some regards if you have somebody who has anything along the autism spectrum they are not really going to be able to associate the spatial representations and associate them with pain. Because they have very poor social killing so that's not going to be quite as useful for people who have autism. But it can be pretty good for people who have Down syndrome.

What if for some reason or another you cannot use a pain scale? Hopefully you got the message across already that pain scales are useful but they are not the be-all end-all of pain symptom assessment. And developmentally disabled patient population. So if you can't use a pain scale, will remains are your clinical skills, your knowledge of the person you're working with, and the opportunity to compare current functioning with higher functioning. So you can see hopefully that that would invite ongoing work to have a high level of similarity with how your person we are working with doing about in a variety of circumstances -- functional, vocational, interpersonal, sleeping, eating, activities that they daily living -- relationships need a monitor in the ongoing basis as well as behavior patterns and specific locations like dining room or mental -- previously enjoyed activities because if we can't use pain scale the primary techniques of the assessment are to prepare current functioning to all of these areas with what had been observed a previously when the person's pain problem was under control.

Measures for assessment would of course be a complete pain assessment which includes your objective if you can use a scale but also your objective description. Sometimes the pain intensity scale to monitor pain can be helpful under certain circumstances. So another way to conceptualize is it is to think about each of the components of the pain assessment. Certainly we learned where the pain is and sometimes people won't know because they just don't have a really good idea of what's going on with her body but you might be able to detect it by if they're embracing are not moving or move a certain way -- for example a lot of people who have Kurt or G.I. problem is people with the have a certain amount of acid or that bubbles over the cardiac Center the top of your stomach -- so uncomfortable you might see them do this which we call the parentheses movement sometimes they do both at once but usually it's one of the other and they're trying to tip that cardiac sphincter the sphincter at the top of the stomach to relieve the burning or pain or shift the asset around it a certain way and sometimes you can look and see where the pain is they maybe have a moment like that -- we have to determine the intensity sometimes forget that information from the individual and sometimes you get the overall timing of it -- what's going on with the pain is it better in the morning, is it worse in the afternoon, is it more common at that time is a more common before meals or after meals maybe they aid to pastor a too much seems to get pushed around a little bit what

makes it worse activity can make things worse so have to go with and figure out what's going on with the individual you're trying to take care of -- what makes it better, to bed with DD have tactile sensitivity that are queued into that -- multirole -- cultural -- one of our science needs clients these to feel this microfiber she has a blank microfiber bag blanket of has a very nice texture and she really likes that and she's able to manage her pain better because she has this tactile experience. And what is the response of going onto all the treatment of gynecological and nonpharmacological and there's more nonpharmacological intervention the pain management which we will go over that idea to keep a record of experiences that people have with pain and the treatment you're doing and the medication that you're giving -- you want to be able to share this information with your colleagues so that everybody knows what's working and what is not working. And there might be some drift from some that used to work but not now it's not working very well so you want to write down the date and the time that the pain is happening and the pain intensity can be a scale 40 can be a scale 402 10 four excruciating pain or a little is able to communicate back to you or the way that you are assessing that annual look at non-medication treatment for the pain. Tactile experiences, posturing, soothing, have something to ice chips to sex suck on or something to occupy them all of those are non-medication treatments what method did -- aspirin Tylenol Roxicodone, what other people are taking -- and what was the person that doing when the pain began if they can communicate that to you and also an hour after you've done the medication or non-medication treatment how is the pain intensity changed -- we lock it in at an hour says that generally the Stanford good care is to check after you do a PRN but certainly have to do a nonpharmacological intervention is to check the pain intensity and sometimes the triple upon activities to see if it's going to work. The proxy reports very important for people who are nonverbal so they would approximate report from other clients -- talking about people being residents -- what will they tell you about how they're doing while there was washing breakfast dishes or something how to use information from others including family members and staff members -- level of pain -- you want to know where it is where is it at and what's the location of it and you want to know the severity of the pain either what the individual as indicated in terms of how bad it is for them or what people are observing in terms of how this you want to incorporate everybody else's information based on their description of what they see. Objective review of what's going on with another individual is very important. We can use a lot of that information sometimes people don't realize how valuable their observations are so whatever they thinking about what they're seeing if there seen somebody doing the parentheses movement are they interpreting that as they are just trying to get attention which is not all that useful of an interpretation they can something everybody isn’t with the same brush if they're trying to get attention -- interpreting it in a way that shows they know the individual. What brought aren't are they able to get up and do things and what's the impact on their quality of life -- the verbal indicators of pain that somebody will share with you languages of course the top of the heap if somebody can say this words -- my head hurts my stomach hurts my foot hurts -- then that's the best in terms of indicators of pain if they can use language. If the verbal indicators are not very per size with their language on the map where they are hurting we had a couple funny things for people had general -- supine standing up person that Michelangelo and would show to a young woman and she's like I have hair I have long hair -- sometimes you get those very literal translations of what you're trying to get in terms of information -- the visual analog color scale to rate pain intensity we look at that in a minute and then this responses to photographs of simulated pain experiences -- so for the

pain scale colors, this is read Scarlet red which indicates indicate agonizing amount of pain and very cool green can indicate no pain. There's also numbers and words associated with the colors. So this can be useful for individuals who have a variety of different developmental disabilities who are able to get something across to you because of this particular scale. This one you have pictures of people who are having certain experiences that somebody in a wheelchair and they bump into a door or you have somebody who's getting their blood drawn and somebody holding a syringe at a distance is -- give injections or draw blood in that way but just to highlight syringe and needle as the source of pain -- someone who's in a wheelchair because are not able to walk because they have pain or they have spasms -- somebody who got a bump of bug bite or a wasp sting door that can be for a number of different reasons. And it doesn't actually look like of the -- I got bit by a spider -- not a spider -- the correctness on that -- we have a man who's hitting his head on a low doorway and we've been corrected on that as well -- I don't wear glasses I don't somebody who took hits her head under stars coming out of the top of their head so these pictorials while they might not be very precise, the individual connection that we encouraged to discuss the pain while they're correcting the photograph to meet their experience.

Sometimes people that we work with PD don't really tell us words that that they're having pain sometimes they're restricted to focal indicators such as in the slide these can be utterances, individual syllables or modes were groans or screens non-word sounds -- you might notice that these are rather similar to the verbal the category not communicating at the pain checklist and an issue that can come up with focal indicators of pain listed on the slide here is that some of our develop RDD people we work with sometimes do these things anyway whether they are in pain or not. So how do we tell the difference between a moan or a scream or non-word sound emitted because the person is in pain versus this is just part of their vocational usual and repertoire. So at this point then we have to start closely tracking the frequency of these focal indicators, what location is the patient and when these happen, what's going on just prior to the initial focal indicator of pain and what are the consequences of what happens immediately afterwards when the patient focal as a something like this -- that gives us a look at what the reinforcement of the indicators -- the volume may change as the person is a more pain the duration of the localization may change for the person is a more pain than there may be other indications of apparent distress that may occur when the patient is engaging in these focal indicators of pain. As we mentioned before, what we are doing is comparing in a detailed way the circumstances and the topography let's say focal indicators of pain that her current now with what was going on prior to what the onset of the pain problem and certain utterances most groans sprains and non-word sounds and were looking for changes we are looking for variations to give us a hand that there's an onset or worsening of the pain problem. In the last workshop we did two days ago we mentioned that people who have problems that are communicated primarily by verbalization or by observation are at risk for under treatment of their pain. Actually even people who can't tell us in a pretty detailed way that they are in pain are often not treated adequately for their pain but certainly no mental disability people at risk for this set and especially those who are nonverbal and non-focal -- keep those people are very often under treated for pain symptoms. Sometimes that's because we have staff forget or don’t know how to use proper pain assessments for non-verbal or nonlocal people. But as we have seen today, focal indicators and verbal indicators are just one of a number of different categories for work or channels in which pain related symptoms can

occur. So if we are working with somebody at the background that they’re primarily nonlocal or nonverbal then we should be looking elsewhere for indicators of pain problems. In this case, the absence of evidence of verbal or focal indications of pain is not the evidence of absence of the pain problem it's just for a nonverbal or nonlocal person we were looking in the wrong channel and we need to look in the correct channels for nonverbal and nonlocal develop a duty people if we are going to have a chance to effectively detect the fact they have developed or worsening pain problems. So people

People for nonverbal and nonlocal with DD who are in pain need special assessments which means we need to change a channel that were watching because basically were looking for a verbal or focal it will be there. We will continue to have very limited sensitive to the cues given and you all know your science very well you know what they normally do for changes. Were there looking for something that's going to be different about the individual so your sensitivity is the channel you need to be watching you need to interpret those queues effectively and need to understand what that individual is going through and why they would be using that particular channel of getting this information out there you need to respond to the cues and you have detected in turf and interpreted and you need to evaluate whether your response improved the pain symptoms that's how we get that grade that kind of shows what is and isn't working overtime. Those are the things that in general framework of what we will be talking about when we do pain management and module three but these are the assessment pieces of it that are the building blocks or the foundation of your assessment you're not going to be able to do effective pain management if your original assessment is somehow flawed. You have to you known pretty good at that and need to take credit for your sensitivity to your client’s cues.

And at the same time we take credit for our sensitivities to client’s cues we need to be also doing some self-assessment about our own attitudes toward pain symptoms. Because generally most people do have some attitude towards pain symptoms for example some of this may been brought up a very stoic families where it wasn't encouraged to complain if there was pain just soldier on and others of us may have grown up in families where people with were very expressive and communicative about pain symptoms that they are having an so we. Might expect a person we are working with is having pain -- patients in general and certainly extends to developing the does to DD people are very sensitive to the staffs expectations in the staffs the man's in some cases -- we need to look within ourselves and see what her attitudes are. Is it okay for example for DD people to complain of pain they’re having one or having pain we think that's okay? Do we have some kind of attitude that DD people should put up with a certain amount of pain -- do we have some kind of standards that we grew up with about how should people behave when they have pain and what do you think when people don't behave in that way when they have pain. And again, staff to have a powerful influence on the reporting of pain symptoms -- give you an example -- if we have staff that were brought up in a kind of a stoic environment so they don't the family didn't complain of pain much and talking about pain was discouraged and those staff had not examined their attitudes about pain -- when they work with DD people who have pain, they might even subconsciously or unconsciously feel a little bit better about those DD people that they think have similar attitudes about pain. So the other DD people if they develop a pain problem and complain about a, would probably send some subtle disapproval and times of doing of pain assessment

that means those people might be less prone to report their pain symptoms and might miss an important onset or worsening of a medical condition for example Kush over time staff attitudes -- not to look forward or talk about pain -- again -- spend a little time looking within yourselves as we all should -- the paradigm shifting doctored trivia buff and I have done developing attitudes towards pain. Here are some erroneous assumptions that people sometimes make about pain and development and DD people. These are wrong. One their nervous systems are so different that pain is not a problem -- absolutely wrong there’s nothing about the nervous system development and DD people that makes them any less assist bolts of pain. Number two, their intellectual disabilities mean they don't understand and therefore don’t feel pain -- absolutely wrong. Remember the last time you were in severe pain how much did you have to understand to know that you were in severe pain -- DD people are exactly the same way. Number three, they don't feel pain as intensely. Absolutely wrong. TV. Since feel every single bit of pain that's in anyone else would feel from a given cause and actually there's some argument to made that they might even feel the pain more intensely it because the coping message coping methods people use to respond to pain might in the last presentation, two days ago, we talked about individual differences why did this person a WebTV respondent a certain way and person B the person with TB respond in a similar way to it that there are cultural perspectives you can take in trying to assess for the presence of pain symptoms. So groups of individuals may share a perspective a culture around the communication of pain and that in turn is going to of fact the results we get from our evaluations whether they are in pain or how severe is the pain problem or how are they responding to pain treatment interventions. So for example, especially living no longer than ever we have different general racial groups or different generational cohorts in with DD people and just like everybody else we know that DD people when they are in pain they may be more assertive and demanding -- figuratively seek pain meds -- when they're in pain -- another on the other hand DD people who generation X or generation Y may need a high degree of support attention and positive feedback in their efforts to cope with pain symptoms. Just like in the general population we sometimes find that underreport medical problems and pain symptoms -- this can also be true and DD population if we think we see those processes going on where they to whom are working good idea to do a little bit more of probing problems with pain. Different ethnic groups have different values about how much one discloses when ones having some kind of distress versus being reserved in keeping a stiff upper lip and so forth and so it's a good idea to think about the culture and background of the person that you're working with and we try to plan out how we will do how they will deal with the pain assessment -- again family of origin attitude toward pain is very important -- family may have gone beyond just having on the one hand a stoic versus on the other hand an expressive attitude about pain symptoms. Some families have very idiosyncratic ideas about pain, illness, medical treatment in general, and person with you're working has absorbed those attitudes then need to have some idea about that if we’re going to have a chance to it affect the pain assessment.

We know in general that some people are more resilient than others and this is certainly true about the DD population. And one of the things that we can look at is how has that DD person responded to prior episodes of stress, discomfort, medical illness, adjustment problems, negative events in life, momentary difficulties, or even disappointment. We may be able to make some prediction of that to how the person is going to respond to an upcoming medical

procedure or some injury that unfortunately the person has suffered another are pain symptoms. In general the best predictor of future behavior is past behavior. So to some degree we can look at the prior examples of how the person is having difficulty as one indicator of how they may be coping or not so much coping with pain symptoms. But as we stressed in the workshop the other day, if we are working with ADD person who has shown over the course of their life a high degree of resilience and now they are undergoing circumstances that seem likely to include a pain problem, we need to do a little bit of extra probing here because the resilience baby feeding that person to underreport this pain symptoms and if they underreport pain symptoms they're more likely to not get the treatment they need for the pain and as we mentioned the other day, that can have a kept detrimental consequences. The other day we talked about the personality model and pain assessment and you might recall that her acronym we can use it to areas canoe or we will use canoe today. And during the competent pain assessments helpful to think about the person that we are working with and how do they fall on these different variables. And so to assess consciousness, we would think about the person's history did they tend to be diligent and careful him prepare for expenses a lot plan things out and expect things to go I and a certain order and take measures to ensure that or are they more of a laissez-faire whatever take it as a comes kind of individual -- we find some we are sensing are more laissez-faire, then if we think they might have a pain probably need to do a little bit more probing because they just might not be working very hard to track and report the pain symptoms that they've had. If we are working with somebody who is highly agreeable they tend to be accepting and basically happy just about whatever's going on and change their positive outlook look much and we suspect they might have a pain problem, we need to do a little more probing here because one of the things that might be agreeable about in the onset or worsening of pain -- if you're working with somebody who is scores relatively low on the neuroticism scale or intend to have a whole lot of issues not hearing about badness and anxiety irritability much they cope with adjustments and changes in a relatively comfortable way. As opposed to somebody who's high on this scale it's a whose usually manifested some kind of issue difficulty anxiety sadness, psychological crisis of some sort or other -- if the person is low on that skill level of and functional you might need to do a little probing there be if you expect that person might be developing the paper hobbled because it might they might be internally psychologically comfortable about the pain and that might lead them to of if we are working with somebody who we suspect as a pain problem development disabled person in their very open to new experiences you know they are always reacting well when something new or different is offered -- changes happened and there fine about that -- that might be a person you need to do a little extra probing with because if we suspect they have a pain problem they might've just taken the onset or worsening the pain worsening of the pain is another new experience Audio cutting in and out the pain problem won't be adequately treated and as we said the other day, folks high in extroversion just involved with the idea of people socializing -- are different from introverts or keep to themselves and the persons the introvert keeps to himself or herself sort of person just may not do a whole lot of communicating about what's going on with other people and we suspect that that person is developing or have any worsening pain problem we could do a lecture probing there because otherwise might not hear about it or observe it and the pain problem would go untreated or undertreated. As was the case other day, -- think again about the fact that some of us work with people who also have personality triggers -- reason personality disorders -- one example of the personality trait disturbance or histrionic which means a person is dramatic flamboyant

-- brought AIR on the one hand if we are working with the DD person and assessing them for pain and we see very dramatic pain complaints we need to do a little extra research to find out does that person have a histrionic personality trait that's going to affect the validity let's say of the traumatic nature of their pain -- similarly if we are working with somebody we already know about them their histrionic than it's going to develop into an experience like a medical procedure or they just add that at -- we can make a prediction about their pain report in pain complaints might be like as well as a response to pain as we said the other day there are some people who could be classified as --we are working with the duty people person who has a history of Soma -- we have known about them in the past different emotional path -- physical complaints were pain complaints and now we are in a situation unfortunately with a new difficult situation kind of adjusting prices for folks who need to expect the pain complaints and they increase -- and similarly, in general, when we assessed about TV people in recent times one of the questions we need to ask is did this fall under the psychological category and test IP -- -- is the Soma type person actually experiencing an emotional or psychological crisis of some sort in terms of physical distress. We also have as was mentioned the other day, antisocial personality traits or antisocial personality disorder -- and these people can make instrumental use of pain complaints or often the pain complaints is got something that they want. So if you work with the DD person you notice that they tend to complain of pain to get out of activities or to give something that they might want like more rest or more timely down or watching television and so forth, it might be good to suspect or probe for a should say some antisocial traits and summer only if you're working with DD worsens who already know about them they have antisocial traits or are diagnosed with an antisocial personality disorder, then if they go on to develop a pain problem they have a painful method procedure to have some kind of accident injury or difficulty that the pain complaints will be pending that tending towards looking to get some kind of game -- it doesn't make the pain complaints invalid, but the treatment then also has to respond in some effective way to the antisocial pattern in the as we mentioned the other day, some of this work with David people who have borderline personality traits or borderline personality disorder. So with these traits, borderline we are going to see extreme and all emotionally actions we will see a cycle where some type person really other times very hostile towards often the staff is going to end up traction arguing with each other the department of the borderline personality self-interest behavior. Sometimes self-interest will pay their hurting oneself or stabbing one or burning one and you hit it your head against the wall -- every other form of self-injury can imagine. Sometimes that is a response to the pain problem in DD person with borderline traits. So when we see an increase in self-injuries behavior and a person with those characteristics than one of the things we need to think about is baby the self-injurious behavior increased is coming along with a flow of a borderline symptoms. At the same time a square up of a borderline symptoms can be responded to in a cycle therapeutic treatment -- often we do assessments and symptoms, we are devised to look at facial expression and motor behavior. And that advice's sex expands to pain scales we talked about before and items there are some issues with facial expression and motor behavior that of Bolivia's indicators of pain -- let's take facial expression first. Facial expression is often uses as an indicator pain is usually quite what reliable. In other words, lots of people develop me disabled when you're pain they will you will see some particular feature or facial expression change but the problem with facial expression as an indicator pain is that some that to those facial behaviors anyway. So there are development we disabled people who are not in pain who grimace or turn the corners of her

mouth down or who frown -- hot we know the difference between facial expression variation to the pain in the DD person who purchased facial expression changes that are part of their habitual repertoire. When we have that question should always have that question -- it can remind us number one -- probably not a good idea just to use facial expression as an indicator pain and number two you need to look at the other areas in which pain symptoms can be seen -- the other channels for pain symptoms it limitation -- behavioral interactional -- psychiatric emotional functioning in the personal interaction -- see if the indication and the facial expression channel is actually an indication of pain and all of that can be said about motor behavior as well. Usually person is in pain, there is some impact on their mobile behavior. Usually something seen with increasing frequency or decreased frequency or they hold themselves differently or they move differently but again, when you look at the validity consideration, to see that there are many other possible contributing factors to a change in motor behavior. And some of those can be psychiatric and some can be environmental and I remember we had one patient who like to sit in the hallway of the facility she was in this was an autistic patient and she like to stare out the window that overlooked a stand of trees she liked watching the trees. Then one day it happened that every time she was doing sit in a chair look to the window at the trees needed help to get there she would after a couple jump up and move away from there so that was a change in her motor behavior in those circumstances and we were asked to look into that as well as some other things. One of the factors was environmental and that even the SIP stands for environmental and rabbeting kind of work or change with the heating and air-conditioning vent which was less comfortable that patient for her to sit there in the chair so in this case the motor not an indication of pain in indication those uncomfortable environment late for that patient but motor behavior can often change with pain symptoms onset of worsening it's one of the categories that should be looked at as a possible channel of communication of pain symptoms. Very often when the DD persons is having pain there are sleep disturbances so we see when the person is in pain that they have more trouble falling asleep or they don't sleep for as long a period of time than they might have early you morning awakening wake up early or they might wake up in the middle of the night with difficulty or observe them sleeping at the most sleep is restless and more comfortable working with the DD person we suspect of writing it might be developing problems with pain -- we need to do a sleep study. Where the patient can be observed one say every hour -- relate to others and being -- again, sometimes DD people engage in self-injurious behavior. Sometimes that a result of pain. If we are working with the develop me disabled person maybe somebody would borderline traits who already regularly injures themselves, if we see a change in the type of the way they injure themselves or the location where that happens -- or the severity of it -- or the frequency -- one of the possibilities that we need to think about is that it may be the onset forcing the pain problem we need to think about what other possible o and in addition we need to understand or assess what occurred just prior to the patient injuring himself or herself and the behavioral perspective self-injurious behavior is a response on the part of patient to for certain situation or problem. Then we also need to work what happens right after the patient injures himself or herself because from a behavioral perspective the consequence is what will reinforce are not reinforced further episodes of self-injurious behavior. Sometimes that is wrapped up with pain problems in so self-injurious behavior is certainly an important psychiatric symptom because of the lethal potential and of bride of other reasons they can also have some implications about pain

A couple the other behavioral indicators of pain we are focusing on list take a look at the other channel so we can assess more thoroughly and cognitively is to take a look at what's going on with reading -- are they eating a slightly different way do they have to disturbances that they didn't used to have -- we have somebody who their broccoli with refusing to heed and she had been losing some weight and the woman is early 50s and -- wanted us to evaluate hurt. Maybe something gastrointestinal going on that she was having a great deal of pain she had a history of cancer and we were concerned that maybe it happened -- actually when we talked to her turned out that she was having hallucinations auditory hallucination and it was the silverware that was talking to her. what the silverware was saying as she said nothing good -- she didn't want to use the silverware and she was eating things like fingerprints you would eat a hamburger or pick it up and needed when she would drink thanks she would grab entering things but it was just a remarkable decrease in what she was consuming and whether she was touching her silverware or not turned out not to be true story --trauma reaction people with DD in the general population have pancreatic experiences and create people have DD do not respond as well and with much resilience to trauma experience and the town actually could be very low level which is irrelevant or whether somebody would have post herpetic stress disorder and when you have a trauma reaction that is active in this side somebody psychologically -- the chances that the going to have some that indicate the pain are fairly good. They can be triggered by a wind -- a smell from a certain food -- a lighting change -- somebody coughing or sneezing -- a trigger for a trauma reaction is very specific and individualized and doesn't have to be exactly related to the, the person experience they got beaten up we had somebody whose common trigger was stop light when she was out in the car going to the dollar store something when there was a stop sign that really triggered her but she's been and had absolutely nothing to do with the stop sign so sometimes it triggers aren't just more. To one side -- tell them one summer is having a painful experience might be from a trauma reaction not currently having pain but the current feeling the pain from their common trigger. Somebody has a decrease drive to make the efforts that they been making all along or decreased motivation or motivation is just gone all of a sudden know your clients really well -- if all of a sudden see a dropping off or they're just disappearing altogether drive and motivation takes energy and if you're hurting you're not to put the energy into it. Think that's the last time you had a cold and your head is full of phlegm which is lousy girl transmitter and you can't think very well you don't have the energy because the cold is really absorbing a lot of your metabolism and that they've seen thing happens with pain to --not going to feel like doing anything else. Same thing with task completion of people with DD whether of resident or families they have certain tasks they have to do they have to have good structure to their day -- if they're dropping off they're not rinsing off the dishes before they put them in the dishwasher -- they're not combing their hair -- there just sitting there after breakfast and not getting up and doing a series of chores that they need to be doing -- this could be an indicator that the person is in pain. The problem behaviors that can occur again were talking about people who might not be book. To say look this really hurts -- they could have a interactional difficulty where all of a sudden they will be turn around and walk away when someone's talking to them -- they'll do the headshaking or finger-pointing or I person my personal favorite the snake neck finger-pointing routine where there having a disapproving and negative and critical interactional style which is not typical for them if they're always like that then -- if their interactions have changed and they're more abrupt and have this nasty or mean-spirited intention behind them come and might be that they are in pain. The functional

issues that we already discussed not doing the task or not doing them as well -- or dresses or memories or concentration is in past it might look like something is going on -- need to stop and think is it the pain experience. Of course if their verbal, the verbal behavioral problems will be yelling, calling somebody a name, interrupting people when they're talking, not finishing their sentences they just -- there's an abrupt stop to the sentence and the Move On. -- In a kind of unusual way. So that kind of problem indicators of pain and it could be is full of making good assessments.

Many of the DD people we work with are also part-time or full-time supervised work -- and certain things can happen under circumstances can give us a hint that might be a pain problem. So for example if the task persistence or effectiveness or attention are reduced, this can be an indication that there's a worsening of the pain problem. And again in many of these cases we are comparing the client performance with higher performance so a person might already have had some difficulties for example task persistence effectiveness or attention to detail but now they are moldable he reduced one of the factors to think about possibility there's an onset of worsening their pain problem. If there person’s apparent enjoyment of the job they’re doing or job functioning decreases, this can be an indicator of pain symptoms. What we used say about this one -- if you work with people who are depressed if they're enjoying themselves how do we tell the difference between a decrease and enjoyment of occupational functioning that might be due to pain symptoms of versus decreased occupational functions and profession. One way to look for the differences that the press persons everything will decrease where if a person is having a specific pain problem, then there apparent enjoyment of a certain job function maybe we'd have to move a certain way or be in a certain position might decrease but they're not having that particular job function and doing some other job-related activity -- seems to be usual level that is probably more likely a pain problem. Another kind of indicator that's emerged in the workplace is a sign of a non-set up a pain problem or worsening of pain problem is the interactions of others coworkers customer supervisors can be -- sadness irritability decreased effectiveness -- that can also be a symptom of depression as well as a symptom of pain but in general, the interaction affected by depression are or other -- scope in general as interactions effected by pain tend to be more specific is when a person is feeling a higher level of pain. So for example we had a 25-year-old's said down syndrome patient and at a workshop -- we began to get reports that she is having periods of irritability at work and this was a new thing for her -- she didn't have any kind of psychiatric history irritability -- and didn't seem like different from the environment -- and essential sensory functioning didn't seem change -- when she was not irritable or interactions with other seem to be pretty consistent -- but when we corrected observation made observations of her and look like she was irritable when she was sitting she seemed to be fine when she was standing. It turned out that she was having low back problems she developed a painful low back problems went to the chiropractor I guess in that was an example of something emerging in the workplace that told us that in the and there was a pain problem to be addressed. Just like indicators pain symptoms can emerge in the workplace they also can emerge activities of daily living getting up in the morning getting washed getting dressed taking care of oneself -- if we see standards of hygiene addressed this can be an indicator of pain problems particularly when we see an uneven decline. So for example if a person washes up okay and put some clean clothes and relatively as they usually do but their hair is disheveled this could be for example they're having trouble lifting comb or brush over the height of their shoulder could be a pain problem

let's say shoulder problem a rotator cuff injury for example -- so a general decline in the observable standards of hygiene address often comes from a level origin point that can come from pain. By the specific grooming difficulty is called if to performed has to climb in general, this could be a sign of a more extensive medical problem or some kind of severe pain problem so even one of the -- Audio cutting in and out one of the unfortunate things that happens when we see indicators of pain emerging when a person's activities of daily living is that the result of that is that they have decreased hygiene are forward dressed forward grooming and frequently that attracts negative reactions from other people so have pain don't groom as well more negative input from other people emotional distress -- Audio cutting in and out another not grooming themselves even more partly because of pain but also because the motivation starts to decrease in less positive reinforcement from others so that kind of process can go on with pain and ADLs. I and randomly assess problem of ADL not looking for the possibilities of pain symptoms we need to lick --

The physiological triggers of pain we had briefly mentioned in module one in general people need to keep in mind we can tell externally whether somebody is having a pain period if it's as how their breathing is a respiratory rate shallow and fast cuts are having some pain or is it deep and rapid -- they feature two other breeding -- heart rate -- person has adrenaline epinephrine surge -- some kind of pain reaction -- the body is going to pump up a lot of responsive efforts body is making Harper is going to go of blood pressure goes up and unless the pain is from an injury that's freaking out the blood pressure routinely goes up and blood pressures responsive to motional situations if somebody sanctions that can have what's called white coat hypertension somebody comes up them with a lab coat on and automatically tense up in blood pressure goes up surge of adrenaline -- but if you have some at it with the DD who is hypertension in being managed -- antihypertensive and there are lots of different time kinds of antihypertensive you still might seem a little blip go up in the blood pressure which can tell you that they're having a pain experience -- watch what's going on with their gate some people drag their leg or their stiffen up in then don't be enjoyed as much time walking around spinal cord -- or the gay changes in such a way that they are not swinging their arms the opposite arm to the leg as they walk -- in that can indicate that somebody's having a pain experience in their bracing themselves -- postures -- print to see posture but also holding himself in a certain way or very gingerly moving around. So it’s not necessarily that they’re holding a particular posture but they are not having a full range of motion. That kind of posture can make a big difference. Gastrointestinal pain a person might be might have guessed my not avgas but you can tell some is having some got pain. They tend not to let things bounce against their stomach so if they have a necklace on if they have a lanyard that they have a key -- wearing a name badge -- they will walk page forward so it doesn't get their stomach because the entire of down will area as sensitive -- pain perceptions are influenced by the person's physiology -- so somebody who has autism who might have a sensory issue where they sensory experience skin tactile experience is going to change what their pain experience is going to be. As we mentioned in module one it's into these experiences for individuals and that person's physiology to make everything single pain experience much more acute and feel much more intense -- what nervous system functioning are they very sensitive to certain experiences -- did they need to have their parasympathetic system addressed some people who have autism have this paired Nervous System addressed by squeezing or holding their or bundling themselves and that actually helps to calm their central nervous system and that can

help when they're having pain experience. How are they thinking about things are they able to problem solve -- what is their interpretation of what's going on just because somebody has meant ability or hypersensitivity along the autism spectrum doesn't mean they don't have thoughts about their pain experiences. Was there motional state are they angry because they are hurting or are they irritable or audacious because they just get so distracted or are they just depressed are they crying -- because they have such a depressive reaction to what's going on with the pain the emotional state makes a big difference what the behavioral factors what are typical routines like the fabulous Dr. turnabout said whether they do usually and was different are there behaviors being interpreted -- are they interacting with people right away are they doing their task to they have driven and motivation -- are they demonstrating some psychological distress where they are really having a hard time just psychological distress would not present before related to having pain problem and what of the psychiatric factors are they bipolar are they -- are they what is going on with their personality features to they have antisocial traits to they have borderline traits or they do they have a personality disorder that would go along with that. And we said before pain is complex. the assessment for pain which is what the entire module is about really forces you to look at every single variable that were bringing up -- you don't know exactly what's going to be the trigger for telling us what's going on with that individual some people we might be able to pick up on a couple behavioral cues in we have been and other people might have to leave in a whole lot of the other variables to use consider each one in assessments ongoing and the conclusions change whenever there's change in the component that we are assessing. So for more components -- take a look at the list of what they like typically how do they handle things and what's the history -- this helps give us information about what are they experiencing and how are they likely demonstrate having pain symptoms are they resilient how did they handle the bumps and speed bumps and the disappointments of life -- what's her temperament are they typically able to handle things very well have a lovely experience with a 30 something-year-old woman with down syndrome and mother had died very precipitously had cancer a couple weeks she had died -- her temperament was always very upbeat and kind of nurturing of other people paid attention to other people in ways outgoing -- we were very concerned about how she was responsive very close to her mother in her temperament just carried her way through it she went to the funeral -- touch casket and said have a good trip mom to her the whole thing is another stage of life -- didn't really get her temperament to change in any way. So when you keep the canoe features in mind the modes of personality there is probably an expression of pain that includes temperament -- that's what somebody's perspective how do they react to pain was there nociceptive rehab did they have a sense of humor are they able to use it as a coping mechanism had they had trauma the trauma can certainly change how they handle the next and pain could certainly be interpreted as yet again another trauma and watch her overall health are they diabetic cardiovascular risk that we have osteoporosis -- in general need to look at what's going on with her body. That's going to tell us more than just what level -- look at comorbidity that Chris's platform for more pain if you're sick with more than one thing at once and if you have sinus infection and a urinary tract infection those things comorbidities more than one thing at the same time it's going to make everything much more uncomfortable for you comorbidity conditions contributing to pain experience the lettering the pain on top of a general's plasticity order disorder cerebral palsy your stroke affect -- seizure disorder -- seizures will intermittently create the muscle impacts and have pain experiences on top of that -- tobacco now call use those contribute to a platform that seems to build upon because

tobacco and alcohol changes how some nerves work and receptors in your brain work -- diabetes for dozens of reasons up to and including neuropathic pain and cardiac problems because of the way you're going to be able to handle the load that the pain is going to put on the body physiologically as a cardiac problem make it difficult and osteoporosis -- people of developmental disability have a great deal of osteoporosis and some of the side effects of the anticonvulsant medications they're taking some of it is naturally occurring that sometimes you get both. And we don't unfortunately we don't hear about the osteoporotic condition until as late stage which is extraordinarily painful so you have this ongoing bone pain and then you layer of pain experience on top of it can be very difficult.

I know we seen this somewhere before. One thing we haven't talked about much with this acronym is that it's in the order that is in for a particular reason. So if we think about in the SIP always talk about the sip we have to talk about problems once we tech for medical problems the next check for problems in the environment because we don't have to bother the patient so to speak about those we can correct the environmental problem in some cases take care of the issue. In a way once we're done with medical clearance will and eat hot is it least intrusive thing we could do to try to solve the problem -- as a center because of the population sensory it's in there because developmentally population work with so many of our development disabled people have sensory problems and they're not stat they don't say the same they change over time. But it's important to rule that out before we go on to looking at what's going on with the person's interactions something we need to be and then only when we hear all of the other in the SIP problems than me sip then we need to develop delving in the person psychiatric psychological functioning in a way that might be argued as the most intrusive form of evaluation and that's why not only do we like the acronym but we put in the order that we put it in to try to save the patient in the unnecessary difficulty with treatments that might not of been required for example if somebody's agitated and there's an environmental factor like the member of the lady whose lookup window trees who will don't want be called change how a certain event worked in which she like to sit into that. Just a couple more words about this is that sometimes more than one problem in one of these categories can lead to the production of pain symptoms. So for example you may have a bound down syndrome person already having a digestive difficulties of pain and so forth as many down syndrome people do they go along in life and then that person complains about Domino pains to a certain degree and then they get a stomach fires and now the pain complaints are up and is important thing to keep in mind that just because you know about somebody that there's a medical problem that reduces a given degree of pain you then see an increase in pain symptoms are pain complaints is not a safe thing to do to make sure this increase is due to the original problem and maybe a new problem that is been added on top of what you already knew about it the same considerations apply for the other assessment areas here as well. Is never a good idea to assume we know everything there is to know about what symptoms in these areas --?

What we want to pay attention to also was a level of the disability that the individual has and just to focus on the syndrome specific indicators of pain -- there are specific issues that can happen with specific syndromes. So we pay attention to the diagnosis and the shape there and but first things we have to pay attention to in addition to that for example down syndrome is going to have probably a higher cardiac and certainly a higher gastrointestinal problems that would contribute to pain experience. You're going to have people who cardiac functioning

has been very it might cause pain in my cause and China might cause dizziness from time to time -- kind Alexa Be rube tend to have cardiac valve problem mitral valve problems in particular and when the mitral valve in the heart isn't working the way it's supposed to work with the least is fallen the place and has a nice rhythm going if the starting to flutter around it gets sent sloppy than the blood is being pushed up into the head the way it should be and their reliable source of nutrients than the person might be a little hype high toxic oxygen hypoxic with we get up hypoxic we get anxious look anxious at pages so that's something to pay attention to when people have fragile X syndrome fragile X syndrome under looking ages they might have a mitral valve problem that's going on that's interfering with their oxygenation and it might not reach the level of pain where there having angina that might be much further down the line. People have autism spectrum disorders can have pain from different parts of their sensory input -- they can have very painfully experiences and certain fabrics touch her skin it can feel scratchy it can feel painful it can be needles and pins -- the men people have dimension general can have generalized pain and they are accompanying what's going on with their dementing process with a certain tension and suspicion about what's going on in there embracing they don't have a relaxed way of being and if you ever notice when somebody start to become demented they get this kind of acute accusatory look to them disapproving like who are you and what you doing breathing and breathing out there doing they have that generalized tension and suspicion which can of course increase pain symptoms and contribute to that. Let's take a break. Let me talk a little about a little about forgot I had this late can't comment cardiac problem down syndrome fragile X mitral valve prolapse is common sensitivity to textures -- pain stressful versus dementia when you're in pain you have one more thing to deal with and when you have dimension you don't look to see if dimension systems are worsening and going to be something you need to track in terms of having underlying pain --

Perfect let's take a break

[10 min. break and we will be back]

Okay well welcome back to the break. We set was 10 min. but we took longer because it is after all Friday afternoon. Hopefully you had a nice break and now we will return to our topic. We will start off with how we think about accessing seem given different levels of disability. When we work with two deep people obviously we have somewhat what would work with DD people who we hire degree of disability and there are some differences in the way that we typically think about accessing for pain simple symptoms at different levels of disability. So one way to look at this is to divide the level of severity of disability into categories of low or mild disability moderate disability, and severe developmental disability and think about how we might have to address our assessment strategies in each of those two different levels. All right so at the mild level of DD we see people who are likely to be involved with more activities -- have more interactions -- for most of mobile expression perhaps engaging in a wider array of more functional behaviors. At the same time, we would expect that when people at the mild level of disability tells that they have pain or they are hurting and their suffering that these statements from somebody who's moderately disabled might have a higher likelihood of being a reliable self-reporter. We would also be able to look at the consistency among the different areas of functioning. So we are looking at behavior and we are looking at self-report we are

looking at emotional function we are looking at interactions. And we expect that a mild level of disability to see some consistency and indications of pain across these different areas that the person has an onset of a pain problem or a worsening of the pain problem. So the more consistent the indications of pain are, and the more we can rely on what we are seeing in these different channels or different areas of expression, the more we can rely on indications of pain problems actually be reliable and valid in there actually is pain problem there. We asked the question that we are seeing the different channels variable or are they all consistent with each other. So we have a lot to look at with someone who is mildly disabled in terms of assessment for the presence of pain systems a lot of areas we can like and they're likely to be more consistent when there's an actual pain problem present. On the other hand somebody who is moderately to that militantly disabled if there is verbal expression of pain problems it's more likely to be vocal expression that like we had a little work word syllables o even screaming actual words here we observation skills could be more important as a person's less able to tell us about the pain in he's experiencing and proxy reports are reports of other staff reports of family friends or reports of other people on the unit reports of coworkers supervisors customers might be more important for somebody that's not going to be doing as much verbal about pain. One thing we need to ask ourselves what we see a moderately person with moderate disability is physical pain is you need to ask whether or not the pain in and of itself is cost reduction and functioning. A prior level mildly disabled -- moderate -- disability -- sometimes painting the NPRM functioning as -- to the point that the level of disability can actually be seen to worsen. Somebody who is moderately disabled we are much more into the territory of a comparison with their own baseline. What was there functioning like prior to the onset of the pain problem or the worsening of the pain problem -- remember with mild disabilities we are able to look across these different levels of functioning and look for consistency and indications of pain. But here with moderate disability, there aren't as many functioning we can look at with a high degree of certainty that we recognize indications of pain if they were there here we are doing comparison between the patient's current level of functioning and how they are doing prior to the onset or worsening of the pain problems. So with severe disability, the indications that there may be onset or worsening of pain can be quite subtle and sometimes difficult to detect. If there's any verbal communication -- generally vocal very few if any actual words -- so here I were faced with the task of discriminating or telling the difference between the vocalizations that are pain related persons the vocalizations calling out single syllable and so forth screaming and moaning group groaning telling the difference between those that are due to pain versus those that are part of the patient's usual behavioral repertoire. So when faced with that past you have to have a very good idea of what is the usual patient’s verbal repertoire from the time for when they learned in pain -- look for differences. Observation that report scales and very important to as well. And any change -- types and rates of behavior types of behavior include eating drinking sleeping interacting -- what the person doesn't all times is there any change and those types of behavior can be an indication of pain -- what we mean by rates of behavior error say for example going back to the instance of the autistic lady who used to sit in the chair look at trees -- she did that a lot. She did that three or four hours a day. Once the environment got less comfortable for her in that area, option is about a half an hour or an hour a day so that is a change of behavior rate. And what we find with pain symptoms very often there's changes that make spectator frequently with pain symptoms and severely developmentally disabled previous behaviors would accord a lot of person that a lot of that behavior less frequent -- and other behaviors which are really

infrequently done very rare -- can get more frequent. So changes in rates of behavior, one of the possible reasons for that is the onset or forces me to paint development. Pain development -- when we talk to other people about their observations in the different DD person that they're working with a now be can have an increased pain problem -- if do some thinking about the usefulness of their reports -- so for example if this was someone we talked to before have they in the past also reported the patient that has pain when the patient had a prior episode of increased pain. A reports inaccurate -- have to think about could there be any other reasons for the and formant to be telling us about a hello both pain so for example if the happen for bid the patient was in a motor vehicle accident from a relative say there is an ongoing lawsuit about the vehicle accident --lawsuit based legal incentive to report lots and lots of pain. Or the factor that into our interpret the reports the relative may be giving on the other hand -- of forgetting a collateral report from somebody member before we talked about a stoic orientation when a person who doesn't really get involved much with pain symptoms have perhaps think other people should either that person is reporting a developmentally disabled person working with is really pretty comfortable in doing okay, we need to factor in our knowledge about that reporters stoic orientation before we take the report is face value. -- As you see hopefully you have been seen there's been a continue to see and assessing pain population is complex and requires a lot of different ways of gathering data, just look at the percent different per functioning multiple sources of information, if at the same time thinking about our favorite acronym MESIP and we need an ongoing process of assessment -- think of it in terms of what are we -- snapshot or a movie -- a snapshot is an assessment that done at one period of time to capture one moment of the patient's functioning but what we really want is multiple looks at the patient's functional over time. In fact more accurate pain symptoms and also will have an ongoing idea of the baseline -- how was the patient doing then and how was the patient doing now, whether the changes that we see will indicate worsening pain problems or -- indicate functions we talk about our next workshop in our hopefully ‘s there are some additional issues in assessment for pain problems -- here are some of the ones that are frequently capture -- was the patient mood state there are assessing the patient for a pain problems and we see that the patient has some kind of moot issue -- the person is depressed we know the depressed people tend to report more pain than no depressed people we need to factor that into our session -- the patient is irritable that might not possibly be the best time for the assessment because of the liability with the patient helps validity when we do a pain assessment and directly interacting with the person needs to be reasonably comfortable with it that's possible better according to baseline would get the best possible information from the. Some of the people we work with facilities decades and been in treatment for decades and although the quality of treatment for the DD has improved a lot over the years unfortunately some of the over people we work with they spent a long period of time and facilities where following treatment was not as good been treated in ways that previous predisposes them to feel helpless about getting help they needed and predispose them to towards going on with whatever staff would want. And sometimes people who of the social and that we are more reluctant to complain about pain so if we know about the person if they have that kind of history -- and facilities -- then we need to do an assessment there we need to be looking at the person psychiatric status -- various serious and persistent mental illnesses when they have and impair the ability of the person to tell us about the pain therein and may distort the observation -- as well. So really deteriorate -- psychiatric status not a good time to do pain assessment overall interactions with persons doing the assessment -- like

any other activity with the patient, whether it's assessments or treatment related and it all starts with relationship -- if the person or people doing the pain assessment are doing inappropriate and good job -- first thing they will pay attention to is establishing comfortable communication which the patient feels relaxed as possible -- if that isn't done, the results of the assessment are often -- higher risk it being -- so again this is a point about how processes leading to pain complaints can change over time we certainly know that every condition can change over time and people get better or worse next kind of impairment due to pain cognitive impairment is up process factors of pain and for that matter critical issues as well so the point here is that once again pain assessment -- frequently need to be done over time

Captioned Transitioning

The psychosis in general, the three major components. The three major components for psychosis, hallucinations, the slide is a little bit confusing, but right with me hears. There is a hallucination which is a sensory experience. You can have it in any of your five senses. It's an experience that is not real. Your brain is telling you it is real, but it is not a true experience pics so you will hear things that are not there and sees things that are not there and you will smell, taste, and touch things that are not there. Those are the major hallucinatory experiences they have. And other psychotic system -- symptom is a delusion, a thought, something you believe in that is not verifiable. The most common is a paranoid delusion where we think somebody is trying to hurt you or take something valuable to you, like your reputation, your sense of humor or something like that. And that third psychotic symptom is disorganization. I'm not talking messy desk, I’m talking about diagnosis of disorganization as a psychotic symptoms you can put a sentence together. You cannot communicate very well because of the disorganization. Not because of any selective muteness or any other issue, but the disorganization is behavioral or verbal and can be expensive. Psychotic symptoms may mask pain symptoms because the person is so involved with what is going on psychiatrically that it's not really gaining what we talked about the module one, where all of the pain symptoms have to line up behind a gate and you line up one at a time. But it's more of an issue of taking so much cognitive power to deal with the psychotic symptoms; it’s so intrusive that it is right there in your thoughts and your feelings all the time. You may not have the expression of pain symptoms in addition to a. Of psychotic situation may be worsened by pain symptoms because pain removes the resilience and removes your ability to cope. It takes up a lot of activities. You are going to be at a disadvantage because you are psychotic. It will interfere with communication about pain symptoms because your communication, regardless if you are to me indicating verbally or behaviorally, your communications will be more focused on the psychotic experience than on a pain experience because the hierarchy is relegating it to a lower-level. It will decrease your ability to cope with pain when you have psychotic symptoms because it is more intrusive and it's absorbing a lot of your coping mechanisms to deal with psychotic symptoms. And then disorganized cognitive processes can cause the intensity or hypersensitivity to pain. A part of our brain called executive function, it functions like an executive it helps us to organize information so as data is coming in and your expenses you are able to say I don't need to pay attention to that. So you, for example, the lights you are in -- the room you're on, the close on your body, the furniture, the furniture in your environment, the people in your environment, movements in the hall you can relegate to a lower level of it attention because your executive level of functioning allows us to stratify those data points. But we do have a psychotic

symptom, regardless of the psychotic symptom; your executive functioning is . Sometimes it only works at 7% of its capacity were on a good day we are mostly in the 90% range. So you're not going to be able to distinguish and have discrete experiences about data. So you will be experiencing the lights flickering, the sounds, people breathing, writing, the close on your body, the furniture, a truck going by outside, all of these things are going to be crashing in on your awareness and your cognitive processes will be jammed up because of those experiences. It can be an insensitivity because you are overwhelmed with these cognitive messages, so sometimes when you see people who are psychotic and they're just doing this -- it looks like they're out of it but in fact they are too into it. They are overwhelmed with data points and they are not able to stratify a. And then you have people who are hypersensitive. So something very minor like a tag on a shirt or something will make them very uncomfortable and they will keep focusing on it. You have these in sin city bees or hypersensitivity, a distorted cognitive process going on while the person is experiencing pain. So we actually had somebody who had a bad accident that they were in paled on something but they were having this cognitive process go on I'm a psychotic process and they were insensitive to it. And they were walking on it and hardly noticing it because of that level of insensitivity to the pain. On the other hand, we had somebody who was having a lot of trouble with a lot of playing -- eating -- a lot of pain breathing in and brain -- breathing out. There was no up respiratory infection that the person was having a very difficult experience with breathing and that came with the executive dysfunction being distorted.

Let's talk about affective disorder, major depression, and bipolar illness. We have illustrations of what it looks like. Of looks like a cutaway of a magma RX, but that's another presentation. How do we assess properly for pain symptoms when a person has a developmental disability or major depression and bipolar illness. Let's talk major depression first. One of the reasons we are starting with depression first is that, and does when there is a psychiatric problem when there is someone who is Developmentally disabled it tends to be the most common one. The most common psychiatric problem with people who are Developmentally disabled is depression. When we think about depression in the Developmentally disabled, this is true of people in general, you can think of to main types of depression. On the one hand there is a sluggish or exhausted depression where people are withdrawn and unmotivated and inactive and don't do much and don't feel like doing much, they sleep a lot, just really sluggish and under participative. The other type of depression is sometimes referred to as agitated depression. Here when a person is depressed they may be anxious and irritable and they may have trouble focusing and listless and out of sorts in general. Depression affects all facets of a person's function. Activities and daily living, working, social life, response to treatment, and response to pain management interventions as well.

So what do we look for in a developed Lee -- in a Developmentally disabled person who may also be having a pain problem but we suspect there may be depression. How do Developmentally disabled people communicate depression. Sometimes the things that are seen are nonverbal or observe changes in behavior. If it is a sluggish depression, you will see less energy, less participation, less effectiveness and interacting, more sleeping, we may see sadness, crying, often we would see withdrawal from social interactions, we can see sometimes port eating where the person actually starts to lose weight, but as the other doctor mentioned, we can sometimes see weight gain out of some people who are depressed

gravitate towards comfort foods that is also true with people who watch football but that's another presentation. We can sometimes see with depression disturbed sleep, sluggish depression we would tend to see increased sleep by a person, whereas before five or six or eight hours a night and now they are sleeping four, 16 hours. With agitated depression you my secret ability or anxiety and we have to be alert with depression with any indications of lethal behavior, either suicidal potentials, suicidal statements, plans, heaven forbid, act and we also need to be on the alert for the legality directed towards other people. Sometimes with depression you see a Hansel -- hostile intent towards others and homicidal plans and homicidal behavior. In addition to keeping that in mind and assessing for depression with a Developmentally disabled person you need to watch out for a term called group . Sometimes and people develop depression they develop psychotic symptoms that go along with the content of severe depression. So they might are hearing voices, and generally voices will say something negative to them like you are no good, or everything is your fault, and they might have even visual hallucinations where they are seeing horrible things. Going on with emotional depression.

In a more committed the Developmentally disabled who we suspect has a pain problem, we also think they might be depressed, we have to keep in mind that depression symptoms may mask pain symptoms. There is a lot of similarity between the symptoms of depression and symptoms a person manifests when they are in pain. Withdrawal or under motivation for example can come from pain and or it can come from depression or it can come from both. A lot of sluggishness can come from depression, but can also come from feeling like not moving because someone is in a lot of pain. So we understand that depression may mask pain symptoms. Depression also makes a person more vulnerable to pain symptoms. And works the other way around. Pain increases and the likelihood a person may become depressed. Depression increases the intensity of pain symptoms. Pain and depression can positively reinforce each other in a time of accelerating a vicious cycle to a -- so when we are assessing a person for pain, who is Developmentally disabled and also may be having some symptoms of depression, what we end up having to do is do a full assessment, go through the presence of depression and for the presence of pain and as part of the assessment process, we need to understand what is the relationship that this particular person between pain and depression. Are they both present? Is the pain resulting in symptoms of depression or is depression sensitizing the person to what was before less of a pain problem and now more of a pain problem to the increased sensitivity. So there is that to figure out and the way to start doing it is to do a complete assessment for depression and then also a complete assessment for pain.

Bipolar illness which happens 2 to 3 times greater in people who have Developmentally disabled than in the general population. Bipolar illness happens about 2 to 3%. We are talking anywhere from 4 to 9% of people who have Developmentally disabled -- disabilities which is a lot of people. The bipolar depression and bipolar has different characteristics. You can have the mania, which is the heightened -- hypomania, a slight and mania which is a fully heightened mood and then be depressive aspect. Sometimes bipolar depression can require different treatment than major depression by itself and sometimes that is how we diagnose it. Somebody has depressive symptoms and they have all of the problems that can go along with a depressive episode, and you're giving them an antidepressant, and it is not working. And you check to make sure that they are not doing alcohol, which is at the present,

so you have more confounding features there. you know for a fact they are having depressive symptoms, but an antidepressant is not working, and if you add a mood stabilizer and it starts to work they are in the digressive -- depressive phase of bipolar. The symptom topography and subtype can develop and change overtime. People with Diebold does bipolar illness as a diagnosis have three different diagnoses before they receive the diagnoses of bipolar illness because their symptoms are morphing and changing, especially as young adults you have 25-year-old, 30 roll people with Developmentally disabled who symptoms look like something like attention deficit hyperactivity disorder, a personality disorder, and like depression. So ultimately they will end up with a diagnosis of pilot -- bipolar illness so you need to track what is going on with the symptoms and make adjustments and interventions these are the subtype of bipolar in this. First is manic and depressed episodes. Full mania full depression. But that doesn't mean you get mania, depression, mania, depression and that distribution. A mood disorder and have a manic episode when you're 19 and then you have depression, depression, depression and you have 40 episodes of depression within the next 15 years and you don't have another manic episode. That is type I.

Type II is when you have hypomanic or you'll have any mania symptoms whatsoever and you have depression. Lots of depression. And mostly the type twos of the ones that get misdiagnosed or the diagnosis is much more difficult to arrive at because they are just demonstrating depressive symptoms. It makes it more difficult. Then there is something called the rapid cyclers. Those are people who have for digressions when normal -- or Mono -- normal mood in the year. It doesn't mean that they are mania or depressive episode here if there and there's more than four year, then they are rapid cyclers and they are very difficult to treat. You have to be on top of what is going on with them. As can happen with depression, it also happens with media -- mania. Psychotic symptoms can be part of a. And their -- mood congruent so you think you're fabulous and that is what mania is. Your smart your, sexier, better than everybody else gets certainly better than you maggots and it has this taint to it that is excessive and over the top and if they have a psychotic symptom, is probably that they are the Governor. or of God or they had some kind of psychotic delusion around that.

These are the manic symptoms. The abbreviation is date fast , digging, digging, digging fast. What it stands for is distract, the D is for distractibility. So the person is easily distracted. There is insomnia I'm a so they can be up for two or three days a row, they are not sleeping and they are not tired. G is for grandiosity. Everything g is overinflated and over the top in terms of their abilities and who they are and whether they are famous or rich or powerful . The F is flight of ideas. Their r ideas come in so fast into their brain it is difficult to organize them. The letter a is for agitation. So they are moving around a lot and they , because they are distractible and not sleeping and having all these grandiose ideas coming into their head very quickly they tend to be agitated. Their letters -- there speech is pressured and high-volume here we liken it to a fire hose. The words are coming out too fast and too much to be . T is for thoughtfulness. They don't think before they do something because they are not able to stop and process information because everything is coming into their brain so quickly. So they do things that are very dangerous. A lot of pride -- times people who have manic symptoms are much likely to hurt themselves by accident, not by design they are not trying to hurt themselves or kill himself, but it can look to other people as if they are doing things like I

have such fabulous balance I can dance on the railing of the alchemy of the apartment but to the people down by the pool with a person falls it looks like they jumped. symptoms have a high-level activity and that high level of activity can distract from pain symptoms. Keep in mind that people are very organized about even people with major developmental disabilities and if they realize that the medication keeps their symptoms under control and they don't want those systems to be under control, then they will not take their medication. Or they will cheat their medication in some way. So you might end up with somebody who is actually not taking their mood stabilizer because the mania will help them not feel the pain so much. Mania can mask the pain experiences. It certainly increases irritability and agitation that is normally present when somebody is manic. So they will be even more irritable and agitated and you might not know why that is going on. You might just think that symptom is getting worse. It's going to decrease the intensity of the pain because their brain is very occupied with the mania. And it will decrease the ability to cope with pain because they are not coping with much very well at all. So they are not going to be able to recognize the pain and they will not be able to process the pain and they are not going to be able to cope with the pain.

Depressive symptoms are exactly as in major depressive disorder. The depression can mask the same -- pain symptoms because a lot of the pain symptoms look like they could be pain symptoms or they could be depressive symptoms and we have to pull that out. They increase the incidence of pain experiences because of the way we are wired as human beings, they actually -- we will feel pain more acutely when you are depressed and when we are in pain we are more likely to get depressed. So those two things start to fall together. There is an increase in the intensity of the pain and there is decrease in the ability to cope with the pain.

Sometimes when working with Developmentally disabled people who may have the onset of Alzheimer's dementia and possibly onset of pain problems. And assessing people with dementia for pain can pose its own set of issues. We can divide Alzheimer's dementia for the purposes of pain assessment into mild, moderate, and severe. So in mild Alzheimer's dementia of we don't necessarily expect to see a lot of education or frequent verbal outburst or sustain yelling, or mealtime issues, through every ability, or acting out. Because you don't expect to see that with mild dementia, if we have the government duly disabled person, someone with down syndrome whose had Alzheimer's dementia onset but is in the mild impaired range of dementia and we start seeing a notable increase in agitation, verbal outbursts or sustain yelling or trouble with mealtime issues or acting out, one of the things we should suspect there is a possibility -- as a possibility is that this is the onset or worsening of a pain problem because even mildly demented patients board -- who are Developmentally disabled will tend to manifest these symptoms when they have significant pain. On the other hand, with moderate or severe Alzheimer's dementia or -- a Developmentally disabled patient will be agitated at times anyway. They will have verbal outburst anyway. They will have mealtime issues even when not in pain and they will go to the episodes of physically acting out anyway. In this case when a person has moderate or severe dementia, what we are looking for again is change in the frequency rates, intensity duration of all of these symptoms. So the person had a certain level of agitation but now they are even more agitated or before they had two or three outbursts of yelling a day and now they have 12 or it used to be that if you sat them in a quiet table out of the main area of traffic they did okay with mealtime issues but now they just can't tolerate this anymore and

previously they would look a bit aggressive and now they are out of sorts. If they are severe impaired dementia, a patient with Developmentally disabled these are potential signs gear changes in behavior of the onset or worsening of pain problems. So we can come at this with two directions. We have someone who is moderately or severely impaired with Alzheimer's dementia and the mental disability if we know that person is going for medical procedure or have had an accident or injury, we know to expect that it is likely that they will have more agitation, verbal outburst, mealtime issues, and physically acting out. We need to plan with that with our interventions and management and from the other direction, if we see that a person is experiencing these symptoms, exacerbated in a starlet -- sudden way, we need to consider pain as a possible explanation.

Many medications that treat dementia, they are called: a stir in inhibitors. And not to go into the pharmacology too much because we will do that in a pharmacology to her later I. There are common gastrointestinal side effects and a side effect, major side effect is nausea and pain. So the medication we are giving for dementia can cause pain when the person already has a pain situation. And so you have to be able to acknowledge when the pain is occurring that is a side effect of the medication versus when it has the pain situation a place. There are hazards in addition to benefits for the medications. It does not delay the disease process whatsoever. We have not discovered that yet. What it does is it increases the availability of choline in our brains. The choline helps those with memory. So it will help that particular neurotransmitter the a little bit more effective for us while the disease continues to do -- degrade the effectiveness of the memory and that is what these inhibitors do is delay the full effect of the process of Alzheimer's the measured the major hazard is G.I. bleed so you might have gastrointestinal bleed go on and sometimes it is hard to tell that it hurts but they can have pain without a bleed so there has to be fairly good assessment on that. Some problems unique to be developmentally disabled population are the environmental impacts. The people with DDR sensitive to ambient environment. PB -- temperature, light, vibration, absorption of sound, so some places, especially if you have a lot of tile and things like that. The decibel level balances around and it can be very confusing. So that ambient environment can have a lot of features to it that can be a problem. There are changes to the environment. We had somebody who was actually doing quite well with a chronic pain set of symptoms and they decided to upgrade the paint job in the place, which the resident, the group home he was living and had this revolting green paint and that was the thing in the 60s or 70s when they build this group home. They decided to change it and they upgraded it and they painted it a nice color. He did not like it at all. It was very disruptive to have your key did not like it. It bothered him. If physically bothered him. There is health impacts. People with developmentally disabilities have comorbid decisions .

Substance abuse issues. We can do an entire module, we can do a whole set of modules of substance issues with people with developmentally disabilities. It's a huge problem and has only recently been acknowledged to a small degree in the literature. There is long-standing substance use and stuff since abuse issues with people who have developmentally disabilities frequently what happens is somebody may be self-medicating. So if they have spasticity they might use some marijuana or some alcohol, whatever they can get a hold of easily to make themselves feel more comfortable. If you have pain issues, self-medicating for pain is a common issue. Recently we have seen these commercials where people are going into the

medicine cabinet and will take their medication and when they close the meditative -- medicine cabinet you steer it young person or teenager -- you see a young person or teenager and they say you should be careful with your medication. That's the same and these homes, they can self-medicate or. Bears misunderstandings and misconceptions about substance abuse with people with developmentally disabilities. This is a new opening that needs to be explored more thoroughly. There is also inadvertent substance abuse issues where people will have a developmental disability, and maybe family members don't understand what the impact of one beer that doesn't have a lot of alcohol, is still alcohol and can have a terrible impact on what is going on with that person with their developmental disability and with their pain and with their other medications they are taking with comorbid conditions. Sometimes they read directions wrong or they can't read at all and are functionally illiterate and they will say something does take something with a cold medication that alcohol base and they don't realize they're taking four, five, six times with a dough should be because it's liquid and they just loved it back. Depression. Is a per se -- pervasive problem in our society in general. It is called the common mental illness because a lot of people, one out of four women and what are the six men will have a depressive episode in this life and that rate is higher for people with developmentally disabilities. Alcohol is a depressant. Alcohol with any source. Wine coolers, beer, heart ciders -- hard ciders. If you can buy in the grocery store people think it is not alcohol. Frequently people will have fit -- developmentally disabilities will stop and buy something that looks like it is lemonade when really it has alcohol in it and alcohol is a depressant. It is depressing psychologically we know if you've ever seen a weepy drunk, they get very depressed but it is also Lee -- also physiologically depressing so it will reduce people's capability to call because they are physiologically and psychiatrically depressed so we don't want to have alcohol additive that. Some self-medicating to treat depression is common. People will say they need to perk themselves up if somebody said at that -- bad day. They will say it is well-deserved because they had a tough day so they will have the on-call. That is translated into a Developmentally disabled population they might think it is a treat or a coping mechanism and they are feeling they are in a funk and they are doing very well they may have a drink to try to address that or ameliorate their situation and is going to make it worse. And it will make the pain worse.

There are complications that arise from combining substance abuse with Developmentally disability. Top of the list is psychiatric symptoms that can make it worse. They will develop psychiatric symptoms that they didn't have before like depression or they will have worse symptoms. They will not be able to be compliant with her medications and that is all of their medications. So if they have a seizure disorder they will not take their meds on time or it will be a distorted absorption process because there is the substance that will delay it in some way and there is an increased need for emergency care services and increased use of emergency care services because they are drunk or high. So it's not easy to think I have to go to the doctor's appointment or have to take this medicine the way as opposed to when you are drunk or high. And any medication is not going to work well if it has a substance onboard. Alcohol, marijuana, opioids, anything will change it. Opioids have a particular problem with people who have developmentally disabilities because it slows down the process and it does they will have constipation. It doubles up and they may have a bowel obstruction. You will have with any diagnoses, psychiatric or medical. The substance will be off track. They will go to the hospital more often and they will have chronic threats to health because the substances that

they are using is debilitating , more debilitating than they are for the general population and you know what it does to the general population it eats away at them. And there is an increased risk of dyskinesia which is a movement disorder. There is behavioral problems because when you are drunk or high you will do things that most people would arrest you for. So you will be yelling at somebody and shoplifting because you didn't realize you papers you did not pay for something or you will fall asleep on the bus and you will not be able though she will miss your stop -- you will miss your stop. Sometimes they can be so intense that they think to kill themselves. They can lose their home because they are kicked out because they are drunk or high and the facility or group home or their family will not tolerate it and when you are drunk or high you are more likely to be violent if you have pain issues.

Pain can be treated by substance abuse. It is ineffective and problematic treatment regimen but that is what people do. And FLACC recipients may seek pain medications as a substitute for what they were using. Selected they were drinking and somehow their alcohol concept or alcohol access was decreased or they were smoking marijuana and they no longer have access to marijuana or their out. So they will complain about pain because they will want some of that experience again. They become more easily addicted to analgesics because of limited cognitive abilities. Addiction becomes much more common and they have more cap those paying complaints because it is, when there is moral pain complaints it tells you there is increased risk of abuse and relapse.

This is a unique population. They must have treatment for these various problems at a level that acknowledges wherever the skill level is for that individual. It acknowledges that they have durable deficits. Things will be weak in certain areas and those are the areas you are trying to strengthen but you will not be able to do a whole lot because you are so swimming upstream against pain and it will interfere with the progress. You need to incorporate behavioral interventions. We are big on nonpharmacological interventions for pain management where we will talk about in the third module. You have to arrange care and a logical matter that takes advantage of the time when the pain seems to be less, when their resilience seems to be up and they have some rest and recuperation that will be taken advantage of. Also you need to arrange for the care in a way that allows for flexibility. If the patient is in extreme playing, of course, you will not say at this point now is when you have to do the dishes.

So pain can signal some problems. Will close -- glucose dysregulation when someone is diabetic that might be a way of telling someone's insulin level is off and glucose levels too high. Hypoxia with fragile X syndrome if you have a slightly lower oxygenation level in your brain you will have some pain as a result of a. Infections in general, very seldom are infections of no consequence on the realm of pain. Seizures can certainly instigate it by a painful set of circumstances. So what is happening is your brain is organizing and receiving signals of pain and if the person is prone towards seizures, the pain signals can generate overt cetacean and so the person may see it as a result of a. Pain can create signal a circulatory problem. You might have spasms in the distal parts of the fingers and toes and pain can say there is a hydration issue. The person is dehydrated. Certainly pain can let you know if there is metabolic encephalopathy something is happening to the brain because the metabolism. There are neurologic problems. We will go to movies

quickly peer pain can let you know there's something going on with incontinence, incontinence of urine or stool. For renal functioning, it hurts when you're kidneys do not work well. Sometimes people just keep -- when kidneys are not working well. Such an overwhelming amount of pain. Stomach problems we talked about. Medication side effects. There are many medication side effects that are pain. And type just think there is not fluid or moisture in the body that can create headaches, it can create gastric pain and circulatory pain.

Going back to the issue of substance abuse or dependence I should say and in DD and pain. Because substance abuse and dependence comes at a higher rate in this population than we previously thought it can also sometimes happened that we have a Developmentally disabled person in an inpatient setting they come into the hospital complaining of pain. It can occasionally happen that that pain in a Developmentally disabled person is an indication of withdrawal from alcohol. Especially in a circumstance where we did not know or are working with a person and did not know they were drinking. So another thing to keep in mind with the Developmentally disabled. Many times we talk about this in the next module, you have a Developmentally disabled person with pain and you develop a treatment plan and for some reason or other the pain symptoms seem to persist. One of them -- things to happen to cause persistent is some problems which result in pain and have more than one contributing factor. For example, a person can have back pain because they had as a car practice would say . But then they can also develop a problem with a bulging disk. That is a separate process but results in a somewhat similar kind of pain. Irrelevant to assessment is it when we are assessing a person for praying problem and we think they may not be -- to a pain problem and we think they are not responding so well to the plan, one of the things we may think about is another problem has come along interfering with the person. Another example would be somebody with down syndrome who has a digestive pain or gut pain as part of the overall physical picture of down syndrome but then goes on to develop a problem with irritable bowel syndrome, that person who may have been doing well with interventions that we have for gut pain now is going to have an additional source of gut pain and one of the possibilities may be to think about is something new has happened which caused the pain to persist. Technically it comes under the letter am in Trenton for the medical issue but it also bears -- sometimes treatment plans don't work and we begin to think the patient is being resistant in some way or another. But you need to be careful about that because instead of the pain being the pain may -- the person may have developed another medical issue in the same area contributing to the same kind of pain.

We just wanted to finish up with a documentation of the pain assessment. We been paying attention to all of the different ways we have to assess pain in somebody with DD. You can use scales and most of the time your observations will be incredibly important. Your interpretations of those observations needs to be given a good look at in order to incorporate it into the assessment process. And then just to comment on what is effective versus what is ineffective in terms of documentation, you are assessing all of the time when you are working with your individuals in your case load. All the time you are absorbing information and making observations of them. Writing it down in an observational way, I saw them do this, they did this differently, this is something that you've noticed is changing and going to be tracked. Very effective documentation. In effective documentation is just not taking credit for

what you do on paper or on the computer. However you are doing the documentation of your care. So this is a process that needs to be acknowledged by you in writing. Electronically or physically. And another effective way is to use that grid that we talked about earlier in this module where you are tracking things chronologically. What are you doing non-pharmacologically. What are you doing pharmacologically. And add our own later -- an hour later, what if this happened as a result of the intensity or severity of the pain or location of the pain. These are the kinds of documentation issues. The vast majority of the time we see fit -- that everybody who's dealing with people who have developmentally disabilities they know their clients well. And sometimes they don't write everything down. Wedel have a comprehensive way of documenting the care. So this is the process to do that.

There are two more slides that are not showing up. So what I will do is read them to you because for some reason it didn't show up. There's an evaluation survey. At the end of the webinar, and the next little bit we will fill out a survey that will pop up on your Internet browser and if you don't see the survey, just follow the link that will be e-mailed to you tomorrow. It should pop up on your browser. If you have any questions or you have any comments, Lisa Zimmerman who you heard earlier but did not see her on camera, this is her e-mail address and her telephone number. We wanted to save some time for any questions. We also wanted to go over the survey. Let me get that because I printed it up and I don't have it electronically.

pause >> Minor glitch. We will be with you here in a minute. >> It's supposed to pop up on the browser. We will see. If anybody has any questions you can type them in. >> We are continuing to 's fewer glitches that we had the other day. We are coming along nicely.

Every minute that passes gets us closer to the weekend.

It's one of the advantages of Friday presentations. >> If it does not pop up in your browser it will come in on --

It's up.

Let me read it.

Dr. Eileen will be off-camera but on audio.

The noncommunicating adult pain checklist is, please select, a self-report inventory completed by the DD recipient. Observational scale completed by staff. Instrument with widely accepted normative scores. Instrument best used with local more met if baseline scores. And the answer is B and D. It is observational scale. It is and instrument best use with normal baseline scores. >> When assessing presence and severity of pain symptoms in DD recipient, which Roy sources coach Rich -- when assessing presence and severity of pain symptoms in DD recipient, which sources of pain assessment yield valid findings? Verbal, vocal, psychological, observational, or all the above? I think it's all the above.

I think so too.

The consensus is that the answer is all the above. You know if someone is telling you something or saying something to you and it the heart rate is up and respiratory rate is up and any other of the observational . The third one is, we have five of these.

Fragile X adults, you are selecting one of these out of this. Can usually give numerical ratings of their pain symptoms. May need observational/proxy sources of info for assessment. Highly likely to complain of gastric pain. Or at high risk for neuropathic pain. You are selecting just one of them. You will select may need observational/proxy sources of info for assessment. A lot of people may not be diagnosed with fragile X is -- symptom -- syndrome. Is becoming more apparent in the record now. The third --

The fourth.

This will be the fourth one. >> Apparently, it thinks we are finished. >> -- speaker away from microphone Which is true but attitudes that staff have about pain?

It plays an important role in determining the adequacy of the assessment. Staff need to monitor their own attitudes of assessment. I'm losing track already. Their attitude is less important with non-verbal DD recipient's. Staff attitudes is less relevant for verbal DD recipient s. The answer is A and D. What you think and what you feel is also -- always important when you are doing an adequate assessment. Monitor where you are coming from and where -- what you think about these.

We are digging around on this wonderful world of electronics for the last one.

Which I'm sure you are eager to hear at 3:55 o'clock in the afternoon. >> Pain assessment results should be documented. At the beginning of treatment quarks --? At the beginning and end of treatment? At the beginning, at the end, and during treatment? Every two weeks as required by the centers for Medicare Medicaid standard and the joint commission requirements? The answer is C, before, during, and after treatment. If you're doing it, recorded, take -- record it take credit for. That is a. Thank you for tolerating our glitches.

Have a wonderful weekend and we will be lack -- back with you next weekend.

See you next week. Event Concluded