Assessment and Instruction of Students Who are DeafBlind
Please stand by for real-time captions.  
>> We will be starting the webinar in just a few minutes. We will give people a few more minutes to come into the room.  
>> This is Rob and what the national center for deaf and blind it's the top of the hour. We will get started. I want to begin by welcoming everybody. I have a few notes. Before I handed over to Amy Parker who would be introducing today's speaker, as you've experienced, the telephone lines have been muted to help eliminate background noise. We also are going to be recording this session so that it can be accessed at a later time. As Amy has posted in the chat pod, a list of where you can find our webinars that have been archived, you will be able to find this webinar in the future. We are going to start the recording now and Amy come after you hear the announcement, you are ready to start.  
>> Hi everyone, this is Amy Parker. Can you hear me okay?  
>> I don't believe the recording has started yet. Just a moment.  
>> This meeting is now being recorded.  
>> There we go.  
>> Thank you so much Rob end. This is Amy Parker. I am so delighted and honored to welcome Doctor Susan Bruce, one of the most preeminent leaders in research in our field of deafblindness, a wonderful author, I great researcher, a teacher of teachers and we are so lucky today that she is here on behalf of the national Center on deafblindness, but also in partnership with one of our professional organizations, the Council for exceptional children, the division on visual impairment and deafblindness. I am just looking over at the captioning. Is my voice coming through okay? 
>> Thank you Cindy Robinson in Arizona. We often rely through these webinars, on our chat pod. As you can see our partners are demonstrating this so well. We do want you to know that Doctor or Bruce throughout her presentation will have some opportunities to take part in asking for your own resources. You are welcome to put that thinking directly into the chat pod. I also wanted to explain that after this webinar, not a new we you have access to the recording and the slides, which we typically offered through our library, you can see the Lincoln our chat pod, but on the intervener and qualified personnel initiative page which is a part of our NCD be website -- NCDB website, we will be posting this with a special forum with Doctor Bruce where you may want to share resources or respond to some of her questions there or engage in any dialogue. We appreciate your time Susan and sharing this fantastic synthesis that you have created here. I know you did it in partnership with others it is a special treat to have you sharing the latest and greatest on assessment and instruction of students who are deaf-blind. As we are going forward, if you have questions for Doctor Bruce, please lose -- please use the chat pod if you can. At some point at the end of the webinar, you can on you your line by pressing *6. Welcome Susan.  
>> Thank you Amy. That was such a gracious invitation. I so appreciate it. Hello everybody. The test for today is to talk about the state of evidence in the field of deafblindness on the topics of assessment and instruction. 
>> Where did this evidence that I am going to speak to you today come from -- about come from?  It came from an analysis from the CEEDAR Center  in the analyzed articles published between 1967 and 2013 on 12 topics that we chose to examine. This work was extended later by doing a more in-depth analysis on just communication and literacy focusing in much more depth on all aspects of the articles, focusing on literature between 1990 and 2015. And still later on, because I submitted an article on behalf of us on the topic of assessment, and it was for a journal that's requested us to go back and do something additional which was in accommodations, I will mention that later. This CEEDAR work  was done with K Farrell who did the announcement -- the analysis as well as Sam Lochner and I did the additional analysis. What does CEEDAR stand for?  It stands for Collaboration for Effective Educator Development, Assessment, and Reform . Every special educator at least in the United States ought to know about the CEEDAR center  and the wonderful work they are doing. This is one of the most well-funded technical assistance projects in our history. The idea of this project is to identify evidence-based practices with a special eye toward how well are we doing to prepare children, young adults with disabilities, for higher education and career readiness. The influence of this work is incredible. It is being applied in 20 states at three different levels. To look at state Department of Education and how they consider this evidence in the licensing requirements, second two SS the [ Indiscernible ] programs as well as third, examining at the local education levels. Some of you may be involved in this CEEDAR work and some of you may be in the future. 
>> The identification of these evidence-based practices came  of course from the existing literature, which would be peer-reviewed articles largely on research studies. When we could not find evidence in research studies, we then went for those practices to look at the practice literature, the professional literature outside of peer reviews, such as in foundations of education and other seminal texts in the field, the three sensory fields.  When you go to the CEEDAR Center , you are going to see the phrase innovation configurations which is representing a selection of documents on a variety of topics related to evidence-based practices. Without sharing all of the ones that I've listed on the slides, some examples would be evidence-based practices expressed through innovation configurations documents in writing, in math, transition, Universal design for learning, sensory impairment, which is the one we're working from. If you want to learn more about today's talk you would learn -- go to the innovation configuration on sensory impairments. There's one on students with severe disabilities and even one on literacy instruction for people with severe disabilities. These are being generated every couple of months. Keep an eye on it if you would. The other thing I my mentioned to you is that the CEEDAR Center uses the term essential component  interchangeably with evidence-based practices. When you hear either of those terms, they are really talking about the same thing. They mean essential components of programming for children.  
>> As I said, we examine publications about research studies and when necessary, practice literature in 12 topic areas for deaf/hard of hearing, visual impairment and deafblindness. And him ejaculate the level of evidence for each practice that emerged from the analysis. We didn't go in with a priori ideas about what we would look for for the practices. They emerged from the analysis. There were some practices are want identified because there was certainly -- because there were no particular research studies on that practice. Even though I say that the findings were at the emerging level, it doesn't mean this is a less important practice Burkett could just be a practice that is more difficult to resort or one that we have not researched much yet, or one that is such an obvious thing in our field and so accepted that we wouldn't tend to explore it through research.  
>> The four levels of evidence are strong, moderate, Limited, and emerging. They are all defined on the PowerPoint. Without reading it all off to you, the important messages, you really have to have a causal design or combination of single subject designs or combination of meta-analyses or correlational designs to get at the moderate or strong level and --. And to be at the limited level you have to have at least one causal designer single subject design. Emerging means we don't have any of those studies available yet at all. When we say emerging level of evidence, we are talking about practices that may be extremely important to us but they are reflected only in our professional literature outside of the literature about studies. I'm talking about intervention studies. We are talking about quantitative research. Qualitative research was not included in this analysis because it did not meet the evidence levels definitions  that we were provided. The CEEDAR Center provides the same criteria for evidence levels  for all of their innovation configurations. Once you are familiar with it, then you will know how to apply it across all of the documents that they produce. There are specifications about number of participants and also the number of different research teams, such as research teams in different locations. There were times where it might seem on the surface as if we had higher level of evidence but when you look, you could realize it was the same team and that doesn't count the same way. Those are important nuances for those of you who are researchers especially.  
>> And starting on the first set the findings, there are 12 topical areas. The first one is administration. The first evidence-based practice or essential component is that each educational team should include one member was knowledgeable about effective assessment and instructional approaches for students who are deaf-blind. This is so critical. I know what seems like an obvious one but this may help people to advocate for this point when teams are attempting to combine a teacher of the deaf and hard of hearing and a teacher of a visually impaired individual and saying we are meeting the needs of a deaf-blind person. That is not the case. We need someone who is having expertise specifically in deafblindness. For those who have experience, we know that is important because deafblindness is a unique disability and you cannot understand the needs of a child with deafblindness by adding at the need that go with the visual impairment and then the ones that tend to be associated with the hearing loss, because the combination is not additive. That is always something I like to talk about teams and when I explain is to administrators. It's not attitude -- additive because it involves both senses that are so important to learning in school. When we explain it that way, it's often an aha moment and people start to listen.  
>> The second one is that small instructional groups should be provided to ensure access, engagements, and sufficient instructional feedback. I very carefully chose those words. What we're saying here is that the larger the group, you naturally will have -- am I to have one-to-one for everybody -- even then someone is going to lead instruction. You are going to have more weight time -- wait time. During that time we are going to more likely lose the engagement of the people that of sensory loss, especially deaf-blind. The larger the group, the less the opportunity -- the fewer opportunities exist to show what you know because the person leading the instruction has to share their intention and opportunities to glean knowledge about how students are learning. They are spreading this across larger groups of learners therefore there are fewer opportunities for the students to show what they know to the in structure and for the instructor to adjust the instruction in the moment. That the key point for us to consider. When we are thinking about when children are included in general education classrooms within our [ Indiscernible ] and what the settings might look like, these are basic instructional principles.  
>> Moving on to the second topic area which is going to take us some time. This is the area of assessment which is a huge area of focus for me. I love assessment actually. That we makes me an oddball but I do love it. The first evidence-based practice that we are talking about is that the emerging level. And formal assessment instruments and procedures are essential to capturing the student's abilities and needs. The sole use of formal instruments is an appropriate. A lot of positive because many people misunderstand the meaning of formal instruments. A formal instruments includes more than those instruments that have norming groups or norming data. Many times students who are deaf-blind are not part of that norming data. Commercial tools are not synonymous with formal instruments because some commercially produced assessment instruments are formal and some are structured informal assessments. What we are saying here is formal instruments, the definition of it really relates more to how the instrument is administered to the child. There are very standardized ways to administer the instrument. That is the key point around something being defined as a formal instrument. Because our children are so unique, each individual is so different, and they have so many complex needs, -- that must be addressed in the moment, including when we are assessing, we have a very standard, struck way to administer, we probably won't be very effective with these children. Formal instruments are often contraindicated by deafblindness itself because we simply can't be as responsive or change what we do, because they must be standardized in their administration. We know that whenever we change how we assess a child, the directions that are provided to us in the manual -- from what the directions that are provided to us in the manual, we have changed the assessment and heard the reliability. Formal instruments are not a good idea to rely on solely. We must include other types of assessments such as dynamic assessment, assessing in the moment and doing things with the child. Seeing how the child response. One example of dynamic assessment is child guided assessment. Most of us are very familiar with child guided. There is a picture of the approach to child guided assessment. [ Indiscernible ] such as in teaching assessments were a psychologist may assess. And then we have the curriculum-based assessment, common example is the task analyses that we do. This is an example of curriculum-based assessment. the next evidence-based practice under assessment is that we must conduct assessments across multiple a natural environments with input from multiple adults. Also, it's important, especially if the person is not well known to the child, that there is a familiar adult there. I think this one is obvious to us. We know that children, all children function differently. All adults do too with different environments. This is probably especially true for children who are deaf-blind is a work harder to understand each of the environments and their role within each. The next assessment evidence-based practice is to identify the strengthen needs of the family as part of early childhood assessment. Of course, we would hope that the needs of the family and their strength and what they can -- not only what they can do to support the educational programming, but we can learn from the families by observing their strengths. We hope that would always be part of our assessment. We just particularly emphasize it in early childhood assessment.  
>> The next assessment evidence-based practice or essential component is that we can dunked functional vision assessments, functional hearing assessments, learning media assessments, including the learning Channel's component with each student. Of course the functional vision assessments also known as the FVA also include the assessment of cortical visual impairment which is essential for many of the kids. We know this is commonly the best practice. When you see evidence-based practice on the slide, it is at the emerging level, we could say that is an except did partisan the field. We don't yet have the evidence. The question would be, given the criteria to define levels of evidence as stroller moderate or limited, would we ever conduct those kinds of studies. Sometimes it's just unethical to study something using certain designs. Why would we do a baseline for example without a functional vision assessment what we know that the children need this kind of assessment in order for us to be informed about how to best serve them? Some designs just are not possible without really engaging in behaviors that are questionable on the part of the assessor for the researcher. That is a critical piece here. Again, just because it says emerging, doesn't mean it's less important. It just may be very difficult to research or unethical.  
>> The next one is use person centered assessment approaches to identify meaningful outcomes the necessary educational supports. I listed a few. Sometimes in the field, especially in severe disabilities we hear about maps and MAPS. The little maps would be the general term for a history map for example where we ask the parent to draw on a flip chart the history of the child and then we can do things such as what is dominant in this child history. Is it a child that has been very ill and the parents never mention the medical event? The big maps which is an acronym, MAPS which stands for McGill  action planning system which was the beginning of all of this person-centered planning from an article back in 1989. That one has its own particular flavor to it. In fact, history as part of -- created in terms of part of the discussion and the mapping. The next one,  PATH, stands for  planning with alternative [ Indiscernible ] for hope Rick you still see this in Europe and I'm sure some areas in the United States are still using it as well. And PFP is personal futures planning  which along with PATH nine  -- MAPS  and PATH  has this person-centered planning aspect. I know there was an article on the difficulty of researching PCP. To show that PCP, person-centered planning had an impact on outcomes in sorting out all of the inter-variables is a very difficult task. They get a whole special issue on that that was quite remarkable. The next evidence-based practice is one of my favorites, be very cautious when identifying additional disabilities and students who are deaf-blind. The diagnostic criteria used with other students may not be applicable.  
>> The word that screams out to me here is autism. Every year, you probably have the same experience. I meet a couple of children identified with autism who are actually congenitally deaf-blind and what happened with the diagnostic team did not include somebody who had expertise in deafblindness. The titled on the autism --.child on the autism scale to my peers to have autism but we could explain their behaviors because of the severity of the sensory losses. I'm not saying that children with deafblindness can't also have autism. I'm just saying we need to be very cautious. Whatever children are being identified with an additional disability, someone should be on the team who has expertise in deafblindness to consider the exclusion criteria that I DEA, the individuals with disabilities or education of improvement -- education improvement act that forward for us.  
>> Continuing on with assessments; we want to assess the visual, auditory and tactile characteristics of each environment the student engages in or may engage in. This is so important. Where moving from assessing the child and even assessment for the future such as the McGill action running system and thinking about -- planning system and thinking about this. It's not just about assessing the children. It's about assisting -- assessing the roles of the adults as well work bullet points here are to determine the potential impact on the students, of the environment. Out would include the people of the environment. Support communication programming and plan appropriate adaptations as well as accommodations.  
>> This work that I said was grounded in the analysis for CEEDAR , we retained the copyright for all of the work that we did, the three of us. We are taking differently roles to take the work we did and put it forward into various publications. Several are already out with one or 2 at press right now. As always occurs with peer-reviewed experiences, when I submitted on behalf of the three of us, the piece on assessment that we just reviewed, the reviewers with American annals of the deaf  -- I'm sorry -- they came back and said we wish you had done something with accommodations. We did that analysis and then we got back together with John and K about that to make sure they were okay with it -- Kay about that to make sure they were okay with it. That's what added to this. This looks a little strange to see the colon MNC deafness on here. This is about evidence-based accommodations in the area of assessment. Since deafness, some of the deafness samples had some subsamples of kids with deafblindness, it's important to know this. I'm going to go to the deafness, the blindness briefly and then the deafblindness. The evidence is different for each. The level of evidence-based accommodations for assessment in deafness is that the moderate evidence level. Things like extended time, interpreting test results, interpreting test items meaning sign language interpreting, reading items out loud, student signing response and a small -- and small group administration and a few others, all fall under deafness combination set with a moderate level of evidence.  
>> What's interesting about the deafness is the practices they identified, evidence-based practices, they are a very specific level as opposed to the field of visual impairments that took a very different approach and really identified accommodations for assessment more by categories. The assessment accommodations then for visual impairment and blindness are at a limited evidence level. It's nice that these reviewers were a little hard on us and said go back into this area, because we would have missed so much information in the sensory areas that could be Riesel -- could be useful to us in deafblindness. Studies and methodologies might be important to study that we could create in deafblindness. In blindness, the identified accommodation categories included substitution such as objects for pictures, enhancements, such as color or size, layout, anything about how space is used, how directions are given, and also how students respond. Recitation, how it's -- presentation, how it's presented is another format. There are two different groups that have created categories. The first group is one I just discussed. The second one is categorized by presentation, time which includes visual fatigue, setting, response and AIDS -- aids, you can read about that if you read the article.  
>> Continuing with visual impairments, we also have specific information, specific to the allowable accommodations for the specific state assessments. It's interesting that a third of the states do not specify the allowable accommodations for students with visual impairments which you could say allows for greater flexibility but for novices it may not be all that helpful because then the students could get fewer accommodations or incorrect accommodations.  
>> The accommodations following categories such as timing, context/setting, response and presentation. Those are just categories that are used to describe the assessment accommodations in visual impairment. Again, those accommodations are at the it level -- at the limited level which is a good starting level. Now we are at the emerging level when we go to the deafblindness. These others however give an idea of what to do. We have study by Horvath and others about nine students across three states. There finding was that there was a dramatic disconnect between accommodations stated on the IEP, what was actually used in the classroom, and again what was used when assessments were conducted work -- conducted. The second one, I really had to dig in. I looked at the visual impairment studies in deafness studies to see if I could discern participants who might be deaf-blind. Was able to do that for the stone, cook at all study. They found there was a need for much greater consistency in an enlargement of materials which is a pretty basic issue, and also we need to present Texan formats that students are familiar with. I am hope thing that this information might be an area of research that we could build on and learn from the field of visual impairment and deaf and hard of hearing which I would think many of the participant's are affiliated with an addition to deafblindness.  
>> I think we are moving on now to our second topic. I feel like I'm talking to myself. It is kind of strange. This is actually our third topic, early identification and early intervention. Here the evidence is a little higher. We are not only past emerging and limited -- emerging, but our past limited and are at moderate now. Early identification and early intervention should be provided to reduce the developmental disadvantages posed by deaf-blind is but how would we use something like that, that piece of evidence? We could cite the evidence of someone was trying to not offer sufficient services or deny services to the trial who is deaf-blind who could benefit. We probably wouldn't see that too often today but it could be used in that type of a situation. Students were deaf-blind require highly specialized and individualized services provided by collaborative teams the respect the role of family and optimizing outcomes. We have quite a good body of research about how family members, this is in part due to home programming, how family members play a very strong role in optimizing outcomes for children who are deaf-blind. That is something we can feel really good about, that evidence exists Birkbeck and perhaps influence them in -- exists. And that could perhaps influence the inclusiveness of families and the strategies used.  
>> Continuing been with evidence-based practices on early intervention and early identification, we know young students will benefit from caregivers who receive preparation on the following, things that we have specific evidence for. They should be prepared to recognize the child's cues for interactions, when they are ready for interaction. They should be prepared to establish routines to elicit anticipation. Think about schedules as well as bodily routines that we establish. Weekly -- we create pause. And we should also be prepared to provide contingent responses so that the world is more predictable. The child knows, if I do this this is likely to happen. If I do that, this other thing is likely to happen. We have this evidence at a moderate level. Of course, by the way, in the innovation configuration, all of the studies that were cited are in the reference pages and in the text as well.  
>> Moving on been to the next topic, topic number 4, reviewing findings on assistive technology. This was a pretty interesting area, getting back into the cochlear implants literature which I hadn't looked at in depth and sometime, it it is especially exciting to see the differences between the information, the findings on children who are deaf versus the findings on children who are deaf-blind. Before we get into that more broadly cover the first evidence-based practice is to select assistive technology best on assessment of each individual student, not what we happen to have available in the school. Not the most familiar technology, it's about each individual child. The bulk of the evidence we have is actually in cochlear implant and this is our area where we went all the way up to strong evidence. We know what we are doing in this area. This is where families have taught us an incredible, incredible amount. I'm very excited about this. The first one is under cochlear implants; students who are deaf-blind experience unique benefits, risks and potential outcome predictors from cochlear implants. That means as compared to children who are deaf. The team member with deaf-blind expedients -- expertise should know this research for the application here would be that on every team serving a child who is deaf-blind, we have strong evidence about the importance of these ideas but therefore, everyone -- somebody on each team should be familiar with this work. This is what I am saying here. The message that relates to the second item on this slide is that what physicians originally regarded as being success for children who are deaf and hard of hearing is not accepted by parents of children who are deaf-blind. The parents of children who are deaf-blind who had children who were deemed is not being so successful post cochlear implementation fought back. They said no, you are wrong. These are the benefits. Over and over again they listed what these benefits were. You can go to those studies which are largely in medical journals and really dig into that research. This is tough research. Here is what they said. They said when reporting benefits or lack of benefits of cochlear implants, you have to consider nonspeech outcomes for children who are deaf-blind including improved awareness of environmental sounds or increase responsiveness. They talked about things such as the kids would be more aware of sounds. A thought that might help with safety pick they said they were more engage with the family, more highly responsive. They felt like they were more a part of the family post cochlear implantation. Of course, therapy to make use of the cochlear implants as well. This is very important information and probably the strongest message that parents said was it --, it broke down the isolation that they saw pre-cochlear implantation. The children that were deaf-blind, the parents reported benefits that were different then children -- the parents of children who are deaf.  
>> I am wondering here if we might want to pause and see if there might be any questions.  
>> Absolutely. Susan, this is Amy. You are doing such a magnificent presentation. It is really rich. Are you wanting to scan the chat pod to see if people have any questions or comments at this time?  
>> I am looking right now.  
>> Okay, great. There is a question here from Twinkle Morgan in Texas. What does PATH stand for ?  
>> Planning alternative tomorrow's with hope -- it sounds a little [ Indiscernible - low volume ] If you are old enough to know what I mean. [ Laughter ] I will tell you what's different about PATH . What makes it really worthwhile to know, sometimes with our person-centered planning we draw these beautiful maps and then when you look, you don't see a good connection with the IEP with a transition plan. That is problematic because we shouldn't be investing our time and other people's time unless we are going to make it something useful. With the PATH approach, you actually do what they call capturing the dream  and you figure out where you are right now toward accomplishing that dream. You determine where you want to be in one year which sounds a little bit like it might translate into annual goals, at least in part. And you figure out where you want to be a three months which sounds a little bit maybe like a short-term objective and where you want to be in one month. You also, as part of the process, you determine who the players are into might need to be added into the process to make progress toward the goal or dream.  
>> Thank you. That was a nice, rich description. I noticed you asked the crowd earlier. What about their interest? How many people have backgrounds in deafness or backgrounds in visual impairment as well as deafblindness? 80 we could have some people chime in on the chat pod and share if they have some of those overlapping interests or responsibilities or training background. With people mind sharing not as Susan goes forward -- would people mind sharing that as Susan goes forward? I know we are getting right into this, one of the richest areas of interest, communication.  
>> I think we can also be free to ask specific questions, especially when you want to dig in any more scholarly level than what I am doing today with this overview. We could do some of that work in the forum too.  
>> That sounds fantastic.  
>> Twinkle is responding.  
>> Amy, should I go forward and you will draw my attention?  
>> That sounds great.  
>> We have our favorite area of communication. Findings in communication, --;, the first one we hope everyone understands. Communication development and social interactions should be emphasized everyday in the context of natural environments. We have limited evidence for that. Again, it's more of a problem of how we would study it. We would not deny that to someone. This would be difficult to have research study -- studies designed. The second one is communication programming should address forms, modes, intends, functions, content, context and pragmatics. Oftentimes we call the form, function, content and context before elements of munication. This could be using vocalization or braille or sign language or body language. That's the form. Intent is the purpose of the message you are sending such as a request, protest, comment. The function has a nuanced difference in meaning which we much recognize in our field. The function is the purpose as we interpret it by the -- as it is interpreted by the receiver which could be very different than what the sender of the message really meant to -- the purpose to be. Context is the message, sign language, braille, print or spoken words. That can be difficult to identify for children with more difficult disabilities. Content includes elements or components such as the physical environment, activities and routines, communication partners and their skills, all of the child individual characteristics that might impact indication, which is greater than disability characteristics. It could be personality characteristics such as being shy or shy in certain contexts and certain process which is process of communication. This includes how they initiate, sustain and terminate conversations at any level or in any form of communication. That is the structure we have used. Remarkable conversations used it from 1998 to 1999 out of Perkins. I used it in my research. June Downing's used it. It's a well used framework in our field. It serves us quite well.  
>> The next evidence-based rectus is to apply child guided approaches to support community Asian development -- communication development and different types of dialogues. Your we have limited evidence. So all of this work such as van Dyck's earlier were, he did many of us at the Perkins school for the blind, all of those early teachers in the field that we so much love. Here's a surprise for many people. People that are very married to child guided approaches only, and I am one of them, might be surprised to know that we have a moderate level of evidence for the application a systematic approaches which would be grounded in behavioral. Some might call this applied behavioral analysis. This is not meaning discrete trial training, meaning something much broader than that, simply grounded in behavioral theory.'s approaches in our field have been more effective to increase the rate of communication and also to increase the variety of functions for intent that children express. This was a surprise to me. Hadn't anticipated it would turn out this way -- I hadn't anticipated it would happen this way.  
>> The next one is applying systematic approaches to increase the rate variety of communicative intents and functions. And I know this is a big debate in the field. Can we teach from what we have now and through practice he will get there. Some people believe that another's do not. We have some practice literature and some of our assessments are being worked on this developmental ideas such as the communication metrics, there are levels of communication. Probably because the kids who are deaf-blind are less likely to learn observationally, even if they have some functional vision and hearing, this concept of teaching at the correct level seems particularly important to this group. The next is to improve the dull communication partner skills through systematic demonstration and modeling. Marlene Johnson comes to mind along with all of her colleagues that have worked with her in generated different ways with the diagnostic modeling moving forward. Those models have been renamed over time. In one of the articles that's in this PowerPoint, you will see that it will send you to an article that will trace the evolution of those approaches which were renamed by her colleagues and prot̩g̩s over the years. That was a good experience to get a strong panel on. Marlene and I are actually working on a study now. That was a great joy to dig into that literature more deeply. What we are saying here is adult communication partner skills and actually across settings, home, school, residential programs for adults -- because she has worked at all levels -- can be improved.  
>> The next one is a tangible resid -- that tangible representations and symbols are critical forms of communication for prelinguistic students who are deaf-blind. This is that the moderate level at this point. Let me check my notes here to make sure he didn't forget anything. Was looking at the PowerPoint and not at my notes. I think we are ready to move on.  
>> Some people wrap literacy into communication. Some people say communication as part of literacy. Some people see this as two different things. Most of the time in our field we have moved past seeing literacy is simply reading and writing. The first point is that in our field, and expanded view of literacy is necessary practice expanded view of literacy should go beyond traditional reading and writing. We require this to address the needs of students who are deaf-blind and also prelinguistic. We know we are required to teach in the general kallikrein -- general curriculum and required to teach literacy. The question is what are literacy lessons and skills for children who are prelinguistic. One example would be daily schedules, anticipation shelves, story boxes. They need to be carefully and clearly laid out opportunities for choices. That could be a literacy lesson. I would love to have a discussion in the form -- forum about choices which I believe is a big problem in special education.  
>> The next one is to provide a literacy rich environment with hands-on experiences to conceptually ground the literary experiences. -- Literacy experiences. I am thinking about the importance of experiential knowledge, experiential background. I meant to say that phrase back in the assessment section and hit it again here. Having the words or science or something is pretty meaningless unless you have the real experiences to ground it. That's where the full meaning of the concept is. Never forgetting about how deafblindness affects one's experiences and how one in -- one defined in experience, what is salient to someone in making that part of the literacy curriculum is so critical.  
>> What I am doing here on this slide, which I will describe, I am showing you how the publications have moved from the original work at CEEDAR  and where we have taken the work since then. It would be nice for you to know that the American annals for the deaf did a special issue on the deaf with disabilities. This included an article that I did with Christie borders who has a specialty also in deafness with intellectual disabilities -- deafness with autism is actually her largest focus area. We were asked to situate the work in a different way and dig in at a deeper level. We took this work and put it under developmental behavioral and social interaction experience. I would invite especially the researchers to do some reading on social interaction theory and -- in deafness. Sometimes and deafblindness we aren't as strong in creating theoretical grounding. All of our child guided work, all of the work that we do that is grounded in the belief that children are learning in the moment through interactions with a more experienced other, fits very well into -- under social interaction theory. Some people are disappointed that we are not adopting some theories her mother field that might apply to us in making it our own. This article presents the five primary findings in communication that we actually went through already today.  
>> There is a new special issue, I've got my copy. I don't know if you have yours yet. American annals of the deaf for the first time that I know of, has a deaf-blind special issue. I don't believe we have had a special issue on deafblindness since 1995. This is very welcome. Kathy Nelson was first editor and I was second. Amy has had involvement in writing for this as well as some of the other people on this call today probably. What we did here was that the medication and literacy work but only looked at these studies from 1990 to 2015 and we added in allocative work and framed it using the four aspects. That's one way we had been digging in deeper. At CEEDAR we were given a certain number of pages in a certain number of works -- months to complete the work.  We regretted later on that we had the accommodation piece that we wish we would have included. The could've produced something a little better and want to for subsequent publications.  
>> I wanted to reference here for you, also the communication Bill of Rights. I serve on the national joint committee for communication needs of persons with severe disabilities known as the NGC -- NJC. Everybody ought to know about the communications Bill of Rights which came out in 1992 and was updated last year. There's also guidelines for it which really flushes out what -- would each of these rights are especially when it talks about need for to mitigation. I have sent in a copy of that. Amy, has that didn't post it somewhere?  
>> I'm sorry Susan. It took me a minute to unmute hear -- to unmute.  It will be posted, all of that information was shared. Robbin will place  that in the Rye bury -- in the library. If you go back to the chat pod, you can find the link where the webinar and materials are posted. We will make sure that's also on the forum. You can find that link earlier in the chat pod as well. Thank you Susan.  
>> Thank you Amy. I might also tell you that within the division of communication disorders in deafness, there is a severe disabilities subcommittee. There are people in that group who have various interests around communication for people with severe disabilities. We post monthly messages. Every month by been posting a message that has to do with each of these 15 rights. You might ask about that and see what you think about those resources. We are having an ongoing discussion, one right at a time, one month at a time, so to speak. 
>> The next area is topic area number 7 which is social emotional. The first one is to identify the purpose will filled by unacceptable to -- socially unacceptable behaviors or unappreciated behaviors, as I often call them. The acronym is FPA. -- FBA. I think it's different for our kids. We need to know a lot of things when we assess behavior. We need to talk about health and sleep patterns and all the different things that our students experience. We must understand the purpose the behavior holds for the child. This is very important. Some of the most important, probably schema for this would be TASC, the foremost common reasons that kids engage in behaviors that we wouldn't like it school, T for tangible, they want something, a for attention, they want attention, S for sensory and then E would be escape or we could say avoidance or task avoidance. It's important to understand, not only the specific behavior, having a specific description of the behavior but also to understand the purpose. If you find out, through coding for example, that the most common purpose is one of those, it's not so difficult to address. If the child is if you do -- evenly distributing across four purposes, that will be more complicated. The next one is to teach socially acceptable ways of communicating and other replacement behaviors for unacceptable behaviors. Of course, this would be reflected in a positive behavior support plan that builds on the FBA. If we did the same elegance analysis -- evidence analysis in another field, we might have more strong analysis. But we could get into some excerpts -- some ethics issues around research. The next essential component is to have knowledge of the child etiology and the impact of deafblindness which is critical to assessment and to planning individualized positive behavioral support plans. When I think about etiology, the first thing that pops in my mind is the large number of children who have charge syndrome who are highly anxious. When we prepare teachers, asking them, what do you think that means to your planning if you hear that you're going to have a new student that's deaf-blind and extremely anxious. And we build on that and explain to them how the child shows her anxiety or some of the in -- examples of some of the situations or viral characteristics that evoke anxiety in the child. Even though we are getting away from the medical model, we have been growing away from that. There's times to understand the medical part and etiology is part of that. It's part of being kind to the child, to understand what it is about a particular syndrome that Mike -- that might make any behavior or any other aspect of their educational experience were difficult.  
>> The next social emotional evidence-based practice is to apply behavioral principles to reduce or limit sterner take these -- stereo at these, self injurious behaviors and aggression toward others. Some that we my use would be pause, differential enforcement, prompting systems, among others. The specific behavioral principles are articulated in the specific studies that were reviewed. We are at a moderate level specific to deafblindness. The next one is that appropriate changes in the curriculum, environment and the nature of her adult -- of adult responses can support positive change in behavior in children who are deaf-blind. This is again saying that the responsibility for behavior doesn't actually lie just in the child. As professionals, it's about our curriculum. It's about things such as how we sequenced the curriculum. Are we doing things that the child struggles within the morning, the work first mentality or are we creating opportunities for them to have lessons that are more at a maintenance level, lessons they can be highly successful at which aren't necessarily at the primary level of instruction, intermingled. Maybe experiences with motor activity interspersed throughout the day. The environmental features and how we respond is also important. This all influences behavior.  
>> I might take a brief POs to see if anyone has a burning question, Amy. -- Pause to see if anyone has a burning question, Amy.  
>> I notice that people are sharing in the chat pod about their backgrounds. We have had some comments from Sarah I've. She is a great admirer of your work. And we have some known folks and we are also scanning through. Cindy Robinson from Arizona says it is shocking that some of the evidence earlier, I believe she was talking about the that it approaches. That might only be emerging. I don't know if you want to make a comment about that.  
>> Just because it's in the professional literature that's not peer-reviewed. I don't want to call it an assumption. That's a weak description. It is so foundational, we all know it's important. We do it. We might decide not to research that. Emerging doesn't necessarily mean it's not a support. I'm trying to FSIs that pick some things are difficult to research and sometimes we would want to create a period of time where we would deny something to someone that we know is likely to be effective just to create research evidence. I have a huge bias toward not doing that. 
>> We have a great question from Twinkle.  Can you see that question in the chat pod? I can read it out loud.  
>> Go ahead.  
>> Twinkle Morgan from Texas says , suggestions for a student that is taking medication. Can an assessment perhaps take over a week to complete? Any thoughts on videotaping for that information?  
>> Yes, assessment can also -- often take more than one week. One time I worked with a child that wasn't just deaf-blind but was quadriplegic and only had I movement and slight head movement that wasn't that dependable. I worked with the team for over a year to learn how to assess her as we were assessing. She changed during that year so we had to account for that. Kids with complex needs can take a long time to really get a good assessment on them. Because we have to cross environments, and assessment should be about measuring where the kids are in their learning at optimal times. I don't think we need to get out assessment so much as in terms of typical -- it doesn't have to be thoroughly generalized. Different assessment instruments to find what you can give credit for. That's another reason why sometimes formal instruments don't work well. Yes, assessment often takes longer than one week.  
>> Great! Are there any more questions at this time or any comments? We can give it one minute for people to respond in the chat pod. Also Susan, I was surprised about going back to your comment about assessment; the communication matrix itself, whereas there was moderate evidence for the use of tangible symbols, three-dimensional symbols, or approaching adapted text perhaps for some students. There was moderate evidence for that. But then for the communication matrix -- [ Overlapping Speakers ] [ Indiscernible - multiple speakers ]  
>> That was just an example.  
>> Yes, very interesting to think about that some things are difficult to study in terms of that -- adjusting your level of communication to this level of the child.  
>> If you think that's the right thing to do, that's what you're going to do. If you think it's obvious, you tend not to research it. That's what our field accepts as being the correct thing to do, teaching that zone of proximal development, especially if you're deaf and blind. They have more difficult with observation and incidental learning and won't read cues that would pull their performance at much higher than what would be done independently. We tend to accept that level idea, especially with kids with multiple disabilities. That's a debate and not one that I particularly enjoy but some people do. Shall I move on?  
>> I can see Brooks comment -- Brooke's comment. We have practice-based evidence in the field of the appliance and are working toward evidence-based practices. I had no idea with this cochlear implant information and where to flush out with a systematic instruction needs to work. This is such an important message. We don't want to assume come in a matter how much we love our child guided approaches, that systematic behavioral-based intervention doesn't work well because it actually does. That's what this review pointed out.  
>> Very good. Another practical question -- [ Indiscernible - multiple speakers ] 
>> Twinkle, can we talk about that one in the forum ? I think that's a big question that I think we need to get ideas on for multiple people pick him up I will tell you my bias. This is being recorded. I am really cautious. I don't like to add that at least prematurely. I'm very concerned about that. I think it's very difficult for us as hearing and cited people, to understand how people who are congenitally deaf-blind learn. We really have to know about the quality of their experiences in the quality of their instruction. So many of them never get a teacher who is University prepared or experientially prepared with deafblindness. My word would be caution, caution, caution. I don't want to venture any further out onto the news with that question. [ Laughter ] That's a good one for the forum.  
>> Shall I move on?  
>> Yes, I'm so glad this is being recorded because you have said so many really insightful things and connected your findings across these different domains. This should be a rich recording and a rich forum to look forward to.  
>> Hopefully. We need the younger researchers to take some of this and dig in deeper and run with it. Remember, this analysis in some areas and did through literature in 2014. Some of this could have moved since then there could always has to be updated. Moving on, math and science are big areas for us.  
>> We have to extrapolate, I think from the field of visual impairment and deafblindness. We have really is our professional literature, the non-peer-reviewed literature specifically. Under math we have some emerging ideas which would be to use consistent wording for mathematical symbols and operations.@Ready exception -- accepted in the area of visual impairment. When preparing to teach each math lesson, we should consider students experiential knowledge, vocabulary demands of lesson, they need to modify the content which means changing what you teach and want the student to learn, the need for manipulatives to support understanding, and the need for adaptations to improve access and participation. We could probably accommodate -- use the word accommodations as well there. This is for visually impaired children they could also work for children who are deaf-blind as well as those that are hard of hearing. Under math; provide instruction on the use of specialized map Radix equipment and specialized approaches such as the abacus or mental math. Whatever special approaches, and whatever new technology comes about. In science, when we prepare to teach a science Lycian we should consider again -- this sounds familiar -- student's experiential knowledge so they understand the concept. Vocabulary demands that might include pre-teaching and post teaching, the need for modification or changes in what we teach, the content, adaptations which could include accommodations and modifications, and nonvisual means of presentation, learning through touch, perhaps through sound if they have sufficient hearing, as well as other senses. That's pretty much all I have on those two areas because they are really weak areas for us in deafblindness. They are also week and visually -- weak in the visually impaired areas as well.  
>> Then we get into life skills. This one is where we placed orientation [ Indiscernible ] we have strong evidence in this. Improve daily living skills through systematic instruction that includes task analysis and the creation of behavioral principles such as graduated guidance. This is strong and actually raising the bar for deaf-blind studies. There were studies largely in the 80s and 90s and this was largely Jim's work that went along with eating, dressing and toileting skills. This is an amazing body of work. It's important to know that the settings of the studies were different than the studies -- settings we have today. These were noninclusive settings, sometimes nonschool settings, sometimes institutional settings specifically. We need a renewed focus I think Ammann updated focus on this particular evidence-based practice on daily living skills. Then moving to the next slide, life skills, continuing, looking at specifically orientation and mobility; the first evidence-based practices with the guidance of the certified orientation and mobility specialists, improve O&M skills through systematic instruction the context of structured activities that are desirable and functional for the child. We have limited evidence for that. It is growing. The second one is the orientation and mobility instruction for students who are deaf-blind must be modified from what is offered to students who are visually impaired. Here are some of the things you might consider. The impact of deafblindness, any balance issues that the child might have, of course their unique communication needs, and also the length and number of sessions which is often caused by a number of things. The largest issue would be communication. The certified orientation and mobility specialists have to decide these mobility skills that they are instructing. Oftentimes in kids that are blind, you can do this simultaneously, committed -- communicating and traveling. For children who are deaf-blind, it's more often sequential, depending on the level of their hearing. That is a very different kind of experience. That's what we know so far, it's more from the professional literature. This is an area that we can certainly grow in.  
>> Moving on to the 11th topical area, it's on transition. The first evidence-based practice is the vocational experiences during secondary experience -- secondary education increase the likelihood of post school employment.. Found this a lot. Knew this piece of evidence was much stronger -- I knew this piece of evidence was much stronger, in fact the strongest indication of post high school employment come is having experienced in high school. We don't have a good body of research studies on this in deafblindness. For us, it's had an emerging level. Want to advertise that it's at a stronger level in some other fields. Were not necessarily a strong evidence level yet however. The second one is in interagency approach to personal futures planning which is critical to capturing the strengths and needs of the individual,  and planning natural and paid supports for all aspects of adult living. When I think about this, I think about the Helen Keller national Center and all of the local  state -- all of the wonderful local in-state teams that we have, and the fabulous personal futures planning that went on in the 90s. I worry sometimes because we are doing less of that. It is time-consuming and we need to make sure it's relevant to what we are teaching the kids not as an activity in itself. I hope a lot more of that is going on than what I often see. That's in the area of transition. 
>> The final area, the 12th area is on placement including inclusion. The first evidence-based practice is that collaborative teaming is essential to the successful inclusion of students who are deaf-blind. That when I probably don't even have to list because we know how important it is. The second one is paraprofessionals with specialized preparation or intervening years -- intervenors are crucial to the success of children more deaf-blind. We don't have any evidence to go further than that. I would suspect that area of evidence has grown since 2014. I think it is something we need to watch when we are making arguments for team members. Remember, we also had the emerging evidence of the importance of having one person who has expertise in deafblindness on every educational team of a child to is deaf-blind. The trick in the field is to define what expertise in deafblindness might mean, what that might include. The next evidence-based practice is that adults must create opportunities for reciprocal interactions between students were deaf-blind and their peers and provide direction instruction -- that should be direct and not direction -- direct instruction about how to interact. Just as we have to train or teach condition partners to improve interactions, as Marley and her colleagues have been so very successful at; the same idea applies to peers with other disabilities and peers without disabilities when we want to include learners who are deaf-blind.  
>> Now we have Universal design for learning. I have a wonderful collie, Richard Jackson at Austin College -- Boston College you is deaf-blind himself. He works part-time at the cast Center  CASS Center. And I also think of another person may not the original design for learning can be applied to enhance access, participation and engagement. We need to apply this to the deaf  wined and do more to articulate that. Most of the literature in UBL -- UDL is about linguistic learners. The three principles to be applied are multiple means of representation -- don't we do a lot with that -- we can take about receptor to forms and expression. We have multiple means of action and expression as well as multiple means of engagement. What kind of cues to be give? How do we set up our environment to support engagement and so forth? Can we do with all of this work? We cannot date it and use it to evaluate our syllabi and appropriation -- preparation. We can uses that an individual student level, advocacy. We can say this is the level of evidence that we have for this practice. If it strong enough, maybe even if it's limited, we at least have some studies that have been conducted that have met the standard of evidence. That standard of evidence was also a conglomeration of CEC and what works. It wasn't just something that the CEEDAR Center invented. It was grounded in other people's work  before them. We can use this in advocacy. We also can use this to plan and service efforts to continue to build the skills of people who weren't University prepared in deafblindness but who are serving the children pick  
>> In summary -- children.  
>> In summary the highest needs are in math and science, literacy especially reading and writing, the more traditional forms. We have been working a lot with story boxes, experience stories, calendar systems and so forth for a long time, but we also need more evidence rather than nonresearch study type of literature. We need more on transition across all issues. We need more on orientation and mobility within the area of life skills. We also need higher levels of evidence for just about everything, just about all of the areas other than cochlear implantation. We need research evidence research -- also for additional essential components that were not addressed in this analysis. There could be a 13th and 14th and 15th area or maybe a subarea that we didn't address originally in accommodations for instance. And someone could point this out. And then we would say, let's go back and do that. I welcome the young researchers or other researchers to dig in and follow up on some of this work. I think it's probably a good time to see if there are any questions. By the way, there are a number of references. But it does before I do that, it would've taken me slight after slight to write the hundreds of references in this work. You can go to the innovation configuration on sensory disabilities perk the easiest way to find this is to Google CEEDAR Center. Underneath you will see a link that says  innovation configuration. That will take you to the list of innovation configurations which I listed for you on an earlier slide then you can click on the one that says sensory disabilities perk then when you get to that -- disabilities. Then when you get to that come you can scroll down to the deaf-blind section if you are interested in that in particular, or you can explore the others.  
>> In the next few slides I just gave you the references for the up dated topics where we dug in deeper such as the research as well as adding all of the qualitative work that was declined in the review for CEEDAR. Now we are ready.  Any questions?  
>> This is Amy. And scanning back through the chat pod to see if there were any questions. I think people are more in the state of processing how to use this information, even when there is emerging evidence. Comments from Patty McGowan from the parent perspective, certainly you touched on policymaking and efficacy which is certainly a part of the family role in our field in a huge way. Any thoughts on how to take areas that do have the emergences -- emerging work and maybe translate some of that work. Beyond the researchers on the call, we also have a lot of practitioners and advocates as well.  
>> Sure!  In the CEEDAR document it will give you brief amounts of information  on each of these practices. Then if you go into some of the other articles such as the one with borders and the one with Nelson and the others, you will see a much more the script do one. The more recent one with myself and Nelson et al. really gets into much more detail. It's more like a paragraph on each of the studies. The framework is the four aspects but beyond that, I think we have a lot of professional literature that speaks to practices that connect to each of those ideas. That would be important to know about as well. I think the resources that NCDB has an Perkins has connected to each of these practices, if you knew the practice you wanted to build and wanted to see get additional information on how to carry it out in the classroom or home, you would probably seek out literature from NCDB or Perkins, I would think. Also some of the Texas school for the blind material comedy independent living skills curriculum and so forth would be helpful. I'm hoping in the form we will be able to share some resources across these 12 topical areas.  
>> That would be fabulous. Want to invite anyone on the call. This is Amy. If you would like to unmute your line, press the asterisk symbol and the number 6. We do have a thread that I have started which will take you straight to the conversation starter with Doctor Bruce after the call. As I said, we will post the recording to the webinar, the slides, the communication Bill of Rights that Doctor Bruce mentioned in her presentation. Those aren't posted yet because we are still live. Sarah I've says we can suggest these evidence-based practices as recommendations in ECC assessments. She says and also FVLMA assessments. 
>> That's excellent. I think we need to find out which 20 state have the CEEDAR based  evidence practices based -- being implemented. I don't actually know that. That would be nice to find out. They might be models for us.  
>> That's a great point. I'm so thankful Susan, that you scrub the literature. I know several I've says she has also had to do work like that as well -- Sarah Ivy has said that she has also had to do work like this as well. Oftentimes you have to look at the blindness only or deafness only and then you have to look at the description characteristics and try to see if deafblindness is included. Erica actually look up certain syndromes such as down syndrome to see if there were --  
>> I actually looked up certain syndromes such as down syndrome to see if they might have some information. There wasn't enough information for me to discern who were the deaf-blind students. Was excited about the piece on deafness to be able to find some of them. There are probably others that aren't identified. -- Weren't identified.  
>> It's time-consuming and a lot of work to find them.  
>> We were a great team. We had a great time doing it.  
>> That's great. Other thoughts or questions? Shelby is pointing out for the audience again where we can find recordings for the webinar and the captioning file which is helpful as well. This is completely shareable and free. Also want to point out if anyone is interested and receiving some recognition from a professional development standpoint or a certificate, a certificate is available for purchase in partnership with the division of deafblindness. If you are not a member, [ Indiscernible - Intermittent Audio ] It's only $10 for that documentation. If you are a member, that documentation is free. You can request this documentation to show that you attended. Many administrators appreciate that. You can include this in your portfolio or however you would like to document your professional participation. That information will also be shared on the forum.  
>> I would like to thank everyone. Wish I could see you. Wish I could gesture. It has been great to have you participating. I hope this is something you can use in your work and it is useful.  
>> I think there is an excited group of people, a lot of things going out across the country. A lot of programs are thinking of ways to include this in their training programs for teachers. I know San Francisco state University is also planning something. This is wonderful.  
>> Thank you for the opportunity Amy. Thank you Robbin and Shelby for supporting the technology. I know I can be a little bit scary in that regard .  
>> They always do a wonderful job.  
>> [ Overlapping Speakers ]  
>> A lot of leaders -- I was so gratified. Here is Carolyn Monaco from Canada as well.  
>> This is a Who's Who in deafblindness, isn't it?  
>> We have so relied on your work and your leadership. This synthesis, I can't imagine how many hours this actually took to put all of this together. It is so usable, the format that you followed and the systematic study an approach. It is greatly appreciated its information we can use for many reasons. 
>> I am very thankful for Kay Farell who asked me to do this. It was a great collaboration. 
>> Wonderful! And the other questions or comments? I'm sure you can look at the chat pod. We hope to see you on the forum. We hope some people will get their professional development units as that may help them. Thank you again Susan for this wonderful presentation.  
>> You are very welcome. Hope everybody has a lovely holiday season.  
>> You as well, Susan. Thank you everyone.  
>> [ Event Concluded ] Them