FVA for Students with Multiple Disabilities_ Part 2_1_0
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I want to thank you for joining us for this event. We appreciate your feedback and your topic suggestions, both of which we will ask you about in a survey after the presentation is over.
I like to know who's with us today. In addition to your hellos in the chat box, we have a brief poll that we'll present on screen here in a second, just asking people to define primarily what's your role. You may hold several of these positions, but in terms of working with students with visual impairment, are you primarily a teacher of the visually impaired, a therapy service professional-- that may include OT, PT, speech language?
Are you a clinical or medical professional, such as an ophthalmologist? Are you an O&M professional? We're asking about them separately because we're interested in reaching out to them. Paraprofessional and educational professional, such as a classroom teacher, inclusive teacher? Are you a parent, family, or guardian? Or do you have some other role?
And I can see nearly 50% of you are TVIs. That's not unusual. That's our primary audience. But we do see some number of O&Ms and teachers here on with us as well. And some others, and that's very enticing. Unfortunately, we don't have a comment box, so I can't ask you what you do. But we'll capture the chat and see whether some of you have given us some other ideas. Just interested in we're meeting.
You've seen you fan club, Rajiv?
My good friend, Linda.
Thanks, Valerie. Let me go ahead and introduce our speakers. Rajiv Panikkar is a CLVT with the Arizona State Schools for the Deaf and Blind. He has extensive experience in residential schools, public schools, and at the University of Colorado as an assistive technology specialist. In addition to his low-vision credentials, he holds certifications as a COMS and a CVI.
Presenting as well is Joanne Szabo, full-time physical therapist and board-certified pediatric clinical specialist at the Arizona State Schools for the Deaf and Blind. Joanne brings more than 25 years of pediatric experience, including having worked in the NICU, acute care, early intervention, and school-based services.
And that is enough out of me. I'm going to give you guys the floor, and welcome back to Perkins.
Thank you.
Hello, everyone. We're just going to go jump right into it, because I think we're going to be pressed for time. So what we're going to try and cover today is understand the challenges CVIs and O&Ms have, questions identified with CVI, recognize the importance of team collaboration. And also discuss how to build an FVA for a student identified with CVI, and apply collaborative strategies, understand the importance of reassessment.
We are not going to be covering or going into depth Roman's work. Can I forward these slides or do you guys do that?
You can, indeed. You should be able to find the arrow right underneath. And I did neglect to mention that we had had a long talk before everybody joined the room that our goal of this presentation today is really to talk about Rajiv and Joanne's work with their particular students.
We're not going to be able to actually teach the CVI range, or dorsal ventral stream, or Dutton's tree of vision. These are all topics that we have resources that we can link you to, and other webinars that go into depth with that. But in the interest of time we've really encouraged Rajiv and Joanne to concentrate on the collaborative effort and the style that they've developed together.
OK, so I'm really happy to see there's two therapists out there. That makes me really happy. Just a shout out to you guys. But as far as challenges, we know and I'm sure all of know working with kids with CVI is not easy. It's hard.
These kids are all different. They're in different phases. And that's why we put this together, because we've had a lot of people say to us, how do you do this? And here at Arizona State School for the Deaf and the Blind, no one person can do this alone. To do it effectively, we all have to work together to get this done.
So you know I think the main thing is a lot of people, including CVIs, are not familiar with CVI. And I think that's because it falls in between this gray area of the neurological insult and the visual problems that result from it. So I think all of us, it's OK to say, you know, we don't really know what to do. We need more training. There's lots of good resources now. The Dutton and Lueck book, Vision and the Brain, and the Roman-Lantzy CVI skills as well, plus others. But we're going to mainly talk about those, because those are the main ones that we use.
So moving right along, and this is what we basically preach is that we have to use collaboration, because you can't do this alone. And if you try, it's very frustrating. And I know it's hard for itinerants to collaborate, but if you can get a team together, and every person has to be responsible for picking up the book and learning how to work with kids.
It has to be that, because it's not something that you can just pick up a score sheet and score it. You have to actually understand what's going on with the child before you can actually use some of these tools.
So I mean, this thing here we're going to be talking about in the early stages CVI will cover up any other ocular impairment. Cannot perform traditional FVA in most cases. The TVI/O&M are the lead for the FVA, for us at least here. But other trained professionals are needed, since CVI affects many behavioral areas.
The team's job is to ensure that the full range of effects of CVI are appraised. When we work together, we spent a lot of time with interviews, and we'll get to that later and observations. But as the lead, sometimes I collaborate solely with Joanne, then we spread out from there, using all of the other team members.
So a solid understanding of CVI critical when assessing and administrating testing to a student with CVI. Testing items requiring the student to use vision must be within the student's visual capabilities. And that's where we use the team. We use everyone on the team to say, OK, what are your goals? What do you want to get from this? What do the parents want? And then we move on from there.
And most of this is already covered in the first part, so if you're returning, this is most likely an overview for you. Those of you who are taking this as your first one, I believe the PowerPoint and handouts are available through Perkins as well.
So preparation for the FVA, we gather information-- medical records review, interview family, caregiver, school team members. Observations. We rely heavily on observations. Home. We try our best to do a home visit. Oftentimes that doesn't happen, so we rely on information from the folks at home. Lead evaluator to bring info back. If the home visit is made by the lead evaluator, they bring back information to the team. School. And then we have the direct assessment itself.
Medical records review. You know here we run the gamut. We have reports from IQ specialists, the TVI can assist in interpretation of the eye report. Sometimes you don't get a complete picture of the vision from the eye doctor's report. And especially with our CVI kiddos, the report may be normal. So evaluation important for the health of the eye and to document pathology. Often to determine if refractive error is present. If glasses prescribed, they should be during the assessment.
So another part of the medical record review that's important is the actual medical piece of it, besides the eye piece. And that's because with CVI you have an insult to the brain. And so obviously if you have a child who comes to you with a diagnosis of CVI, it's pretty straightforward. You can look at the history. You probably see something as listed in this list here. Some one of these things probably happened during birth, after birth. Could be trauma. Could be a middle school student, any age.
But the main thing is why I'm bringing this up is because often you have kids that aren't diagnosed with CVI. And they're visually-- I have this happen to me a lot where you know something's going on, especially those kids in the later phases. You know something isn't right, but they don't yet have a diagnosis and you start to wonder what's going on with the student.
You really have to go back to the medical records and look at what happened. Because if they have a history of these sorts of things in their medical records, that will start helping you piece together the puzzle that their CVI may be involved. Even children with other ocular impairments can also have CVI overlaying those problems.
So a lot of times I'll get them for physical therapy and I'll be working with them and wondering why we're having real problems with distance viewing or going outside. And they're just not using their vision well, and I'm wondering something is going on. And often I'll go back to the medical records and I'll start to look for these clues.
So these are important clues, especially when you see things like areas of the brain that are affected like hydrocephalus around those ventricles where the vision processing centers encircle those areas. It gives you a real clue that something else could be going on and we need to send them back. Or I'll talk to Rajiv, and we'll need to send it back to the doctor, make a recommendation. The parents take them for another eye exam.
And just jump on here, sometimes a lot of our kids that have been identified with CVI don't have really good eye exams. I'm not saying that these are the same, but oftentimes we can tease some of that information out from a report from a neurologist, for example. We try to use as much information as we can, but sometimes we just have to rely on the neurologist's report because the eye doctor was unable to evaluate the student.
So starting the FVA, and like I said, here the TVI, they're the ones who take the lead, but I will tell you, because we're all interacting with the family, sometimes the TVI, if we don't have a CVI diagnosis, isn't even brought in yet, and so I could be working with a child who has a hearing impairment, but I'm starting to ask some of these questions because I'm wondering if I'm not seeing some CVI involved.
So the interview is the first step. And obviously talking to the family is critical, because the parents know. The parents know what's going on at home, how they use their vision at home, what they like, what they don't like. The parents are really key in getting the information that you need to start to piece together the puzzle.
I think the important questions that you have to ask, I've listed them here. And if you look at the Roman-Lantzy book, she has a guide to parent interview, and I even put the page on there. It's a really good resource. And the things you need to ask are what does the child prefer to look at? And does the child have a preferred color? When is their vision at its best?
And the reason you're asking these questions is because these kids, especially in the early phases, you're going to have a really limited amount of time that you're going to get them to work for you. Most of the time these kids have very low tolerance for using their vision, and so it's like you want to try to set them up in their most optimal environment, wherever that may be. It may not be in the classroom. Here at ASDB, often down where I am in our therapy room we have a lot more rooms. We can darken things, we can cover windows. Right or wrong, that's just how it is here. That's one of the better places to get the kids into a more secluded environment for testing.
I can put them in a stander, I can contain them. I'm talking about the initial assessment. Because if you walk into the classroom and you try to get the visual attention and you're not getting anything accomplished, you may have to back up and say, where is the parent seeing them using their vision? When are they looking at things at home, and are they?
And those little pieces of information that you actually kind of take all that and put it together and figure out that's how I need to start my FVA. Because otherwise you're just spinning your wheels and you may get no information, and you will be really frustrated because the student will fatigue really quickly.
And you have to be really careful. Oftentimes what happens here, I'm just going to throw this out, is Joanne would be transitioning a student from say the playground to a classroom or whatever. And my room is fairly close to the playground and she'll just pop in with the kiddo and we'll take a look and discuss and we go from there.
The biggest mistake we as TVIs we tend to do is that we come into our classroom with a bag of stuff and not really knowing the situation or the student. And often we don't rely on people that know the student best, and that's where the collaboration comes in.
So the interview. We've included a handout that you should see down there. It's a PDF. It's a team interview form. We send this out. Either we do it in person or we send it out electronically or complete it over the phone. There are multiple ways of doing it.
For example, had the most recent one I sent out to Joanne, I almost got something like War and Peace, but it's all important stuff. But in that way we combine all that information so we get information on what the needs are, areas of concern and documented questions about vision, goals identified. And it develops a picture of the whole child and the current participation at school. Because some of our kids with multiple disabilities, we don't get that information when we see them around campus. We get that information from collaborating with our other professionals.
Health provider sees students vision use in a variety of environments, whether it's in PT or the cafeteria or during communications, all those areas are very important. Behaviors. This is a big one. Medication that may affect testing. So sometimes we need to coordinate with when we're doing this we need to talk to the student health center or the nurse. Any other questions or concerns that they might have.
The form contents. This is what is on the form. Some of it I don't stick to this. After I observe the child I have a rough idea of what I need to take out, what I can ask, what I should ask. So use of vision, changes in vision, additional disabilities, reading level. Visual difficulties with school tasks, favorite tasks, and visual difficulties with those tasks. Low-vision devices if any, best lighting, glare protection. Mobility concerns.
Daily schedule. Daily schedule is basically for me so that I know when to go in to observe and spend some time with the student. The last item here, the goals for the FVA, that is the most important thing, and I shared this in part one, is that the reason I put this down there is each professional may or may not have the same goal. And it's my job as the TVI to address each and every one of those. If I don't address those goals, then I haven't done a complete FVA.
So during the information that I gathered during this process, this will help me identify what I need in terms of tools.
Or toys.
Toys.
Or lights.
Exactly.
Or reflecting materials.
What's going to motivate this student. Color, a variety of things. And if I don't spend time with the other professionals like Joanne or speech language or mobility, I'm not going to get that information. With the parent, what does this child like to use at home? And sometimes pre-practice is necessary. If I hand someone like Joanne the Leah puzzle to practice with the student until they get familiar maybe with the shapes or the colors, at least I'll have a starting point. As opposed to me just walking in with the puzzle and expecting the student to complete the task.
This is a good time to determine which staff will be needed to assist you. Whether it's PT, OT, speech, O&M, or oftentimes it could just be the paraprofessional, but we always try to work together as a team and schedule some time that we can do that together.
So once you have the Interview completed with the family with the staff at school using the form that we have provided. And again that form comes from the TVI, just to gather contain all the information.
The next thing then is observation. And I want to say that sometimes, let's say if the TVI goes out to the home, they're interviewing and observing at the same time. They're watching the child interact with toys or whatever the child is doing, kind of an informal observation, while they're asking the parents questions. So some of that is done simultaneously in certain environments.
And then here at school, Rajiv may come down and observe while I have the student in PT doing some things. Or if I'm in the classroom with the student, depending on what we're doing, what the routine is, he may be observing during that time.
And the thing with the FVA for the child was CVI that's important here to keep in mind, is when you do the FVA you want it to be in an optimal environment, so you know how that child can visually function where they're at, because when you start adding in all the environmental pieces, that takes them down to a different level. And you want to know where they're really functioning at their best to start, so you know where we really want to work to start to get that visual attention initially, especially if they're in phase 1.
So under observation, the things you want to think about or things Rajiv would probably think about is talking to us, he would say, how are they doing with noise? Does it have to be really quiet? And distance viewing, are they able to see anything? Is everything being pulled right up here? How are they doing with cluttered backgrounds, familiar objects?
It's pretty easy, if he comes in to talk to me or the OT or the speech therapist who are all familiar with CVI, for us to give him this information, because we've already been working with these kids. I mean usually I've already had these kids in my department where I've been in the classroom for weeks or months. And I know what color ball he's going to look at, and all the other ones is just going to scoot right by.
Or I know you know if I give him something shiny, one of the shiny yellow Mylar pompoms or something, that he'll crawl over to it. And if I put something else out there, he'll just crawl on by it. So I can give Rajiv all that information and then set up the environment for him. So when he comes in, he can then observe those things himself.
But during the observation, those are the things you want to keep in mind. And again, looking for the color preferences. And if you don't have a team that understands CVI, your job's going to be a lot harder, but then you will have to go in and start looking for and asking the questions about color preference, and are you seeing them really only looking at things that move? Or looking at the shiny metal post? Or out the window? Or up at the ceiling because there's a fan or there's something up there that shiny.
And I was just going to add that when you go in and observe you have to look at what is in that specific environment. We always discuss where are the windows? Where the student being placed? in reference to the windows and the lights and the fan and all those other materials? So on the back of the team interview form, or when I go in for my observation form, on the back page I actually draw a map of the classroom and I mark the situation where the student is there.
That mainly is for me, so when I refer back to the team I can say, OK, he was placed here in this position. That's this far away from an object. And I can do that with that picture in mind, as opposed to saying, what happened that day? Do you remember we used this? So that way I can draw that picture. So I always have a couple of blank pages on my observation form so that I can draw the map.
So the other thing, the next two slides talk about additional behavioral clues that you may be looking for when you're doing your observation. Or questions you may be asking. And I put these in there because personally I think kids who are in phase 3 are or are challenging for me. They they're not as obvious. It's really hard to pick out what's going on.
If a new child comes to our school and they have phase 2 or they're not even diagnosed as CVI but they may have some of these kinds of behavioral clues, it's challenging. And it's difficult sometimes to figure out what's going on and actually even draw the conclusion that it may be CVI.
So some of these come from the Vision and the Brain, the Dutton Lueck book. And that book I find personally gives me more assistance with those higher kids that are in phase 3. Because they start talking about the dorsal and ventral stream, and the visual processing. And so if you have a child that's maybe not in phase 1, not really gazing at lights and not doing hand flicking maybe to stimulate their vision, or using toys that like to spin, and all those things that most of those kids like to do.
You may have a parent or a teacher that says that they just run out in front of the traffic. Or they reach and they're not even looking at what they're reaching for. Or they can't seem to find their toy in a toy box and it's full of toys. And I tell them, go get their whatever, and they just can't see it. So that gives you clues that, OK, we're still seeing some of those characteristics of CVI.
And then the next page again talks about other kinds of things. Having distress in crowded places, not really being able to see the boundaries on the floor. And of course, that could be a child that has depth perception issues and other things going on. But when you piece all these puzzle pieces together, it starts to build a picture for you. And those are the things you want to keep in mind.
Some of these items on the slide here, you have to note the responses to vision, stimulation direct reactions following the short fixations-- reaching, turning head to stimulus, turning head away in reaching. Indirect reactions-- avoiding, closing eyes, stelling or quieting, smiling, expression change, changing posture.
Now a lot of this, those of you who are TVIs will conduct learning media assessments. You can pull some of this information out from your sensory channels and inventory. And that's the LMA that we traditionally use with a lot of our students.
I want to add something, Rajiv. So one other thing I was going to add to that, too, is that's also another reason why it's good to bring in a teacher, or a therapist, or somebody who knows the student. Because if you're getting those indirect responses, you're not getting a lot of direct responses but you're noticing a change in posture.
You're noticing that maybe they're smiling differently or you're getting those indirect responses to their vision being stimulated, sometimes if you don't know the child very well, it's hard to pick up on really subtle nuances and changes. But someone like me who may work with the student frequently, I will know what that is, and I can kind of clue the TVI into, oh, look what they're doing.
And you have to also keep in mind that you have to be able to put in that time for it in terms of the collaboration. Because as you all know, students are sick, they don't show up, then we have to readjust on days that we can. Our kids, we are fortunate that we have the PT room, we've got speech-language, we've got OT, we've got the low-vision area, so we have lots of areas that we can possibly try a lot of different things at different times.
Right, and also on this slide I noted I use a lot of video. I use my phone. And as long as you have parent consent, sometimes we just videotape it and we watch it later. Or I'll bring it over to Rajiv and I'll show him what I got. Because sometimes it's so subtle, or one person is busy doing one thing, that you just didn't have time to really either note how long they were attending, or there's different things. So using video helps to go back and look at it later.
Also, I noted here there's a form for recording level of visual attention in activities. It just gives you an objective way to document what you're seeing. And that's actually in the Vision and the Brain book, the Dutton-Lueck book, in that chapter on page 404.
It talks about ranking the child's visual attention from no visual attention to very attentive. And it gives you a way of writing it all down. So when you go back for a reassessment, you can then see that progress in a very objective way.
And videotaping is actually a really important piece, because if you don't have an opportunity and you're alone with the student, that's the best time to do it, so you can share that video. Here at our school, our parents usually sign permissions during registration.
As an itinerant, in the past where we used to do is the first IEP meeting, if we couldn't get it before then, we always had this paperwork for the parents to sign. That's usually a helpful way to go about it.
So again, we're still talking about observations. We haven't gotten to the direct assessment yet, which is, like I said, this is all very, very important. Because you need to know the tools you need to bring in when you're doing that direct assessment. So again, we're talking about at home, you're going to start your observation right away as you're talking to the parent.
Initially it's going to be just let the child interact, play, whatever the child wants to do, sort of spontaneous play like he normally would probably do. And then you maybe start making some modifications, changing the environment, repositioning the child, offering different materials, altering the way you present the material. Just to kind of see how the child is responding to some of those changes and intervention.
And then at school you're going to do the same thing, but you have to figure out the child's daily routine, because that's really important. Again, like we mentioned, you need to do your initial FVA testing in the optimal environment, if you can, so that you get their best performance. But as you start working with the child, of course you're going to have to address all the different areas that the child functions in.
Because that's our job. We have to hopefully have this child working towards functional vision use throughout the day and sometimes it can't happen right away. And you want to, but you just can't do that. So you've got to figure out the best environment, the optimal environment, and then you start applying them to those different areas throughout the child's day.
And so you may be thinking of cafeteria, during eating if you eat in the cafeteria. Transitions. That's often what I do. I'm also in P.E. sometimes. Spontaneous play. We have playgroups, ready bodies that I run with kids so they'll be down there doing that with me. So there's all kinds of different areas, depending on how that child's day is broken out, that we need to eventually make our observations.
Now for testing I would say you would want to observe, but a lot of these kids will see them doing a lot of sort of stimming and not really using their vision in a lot of the environments because they're not set up yet. When we can finally start to do that, then we kind of chunk it piece by piece, trying to work on getting each environment in a more optimal set up. But that takes time.
Yeah, and you also have to, like most of you are aware that lighting and glare is a big issue for a lot of our kids with CVI. So we have to be cognizant of those issues, and that's where sometimes the cafeteria may not be the best place, even though it's a good place to observe the transitions, et cetera.
It may not be a good place to do the bulk of the work, even though it may be quiet. Because the glare at most school cafeterias, including ours, is not good. So I think those are the factors that we coordinate and collaborate with to decide where we need to do the assessment or the observation to determine what we need to be doing.
This is the piece that we always try to hit home. Direct assessment is usually maybe for a typical kiddo with ocular impairment maybe 5% of direct assessment. The rest of it is observations and interviews.
With CVI kiddos, it's pretty much the same. You're not spending a lot of time with direct assessment. You're gathering information so you can do this. And you're going to hear this a lot from us is that the direct assessment piece is on a continuum.
It goes on. It's not just once and you're done. It goes on for three times during the school year, three to five times during the school year so we can get all that information. Because the needs change, the students change, the vision changes. Health issues may change. So we have to gather all of this information.
So during the direct assessment, we are looking at student's unique needs. The range of CVI behavior is noted. Looking at visual functions, functional vision, visual processing, motor function, auditory processing, environmental issues, social and emotional issues.
Students with profound-- is this yours or mine? I can't remember.
It's yours.
Students with profound involvement may be difficult to test, as CVI dominates the visual responses. And here are the areas that we're looking at. Functional acuity and ocular motor. Functional acuity review. We have three types. We have awareness acuity, identification, and preferred viewing distance. Definition for awareness acuity is "The furthest possible distance which the presence of any form is first detected."
This is all coming from a collaboration of low-vision books that we've had. Can you pass me that foundations book, please? So it can be in this book, The Low Vision Book, the bible, or the O&M book. You'll see a lot of the stuff in there. And this is typically in-- this is an excerpt from our functional vision report. So it's an example from a report.
This was actually written by a graduate student in the vision program assessing the kiddo with CVI who was interning here. So we have the example here is location indoors in N's home, lighting to west, facing windows with blinds halfway closed in one window. Other window blinds open on a partly cloudy day, no additional lighting indoors. So it says, "And was first aware of a person at 15 feet. He indicated this by smiling. Due to indoor space constraints he could be aware of an individual from a further distance. These results may vary based on lighting conditions."
Identification acuity. The furthest possible distance at which a detected form is first correctly identified. And here's an excerpt. "N gave his mom a different smile than he did when looking at the evaluator from 10 feet away. This suggests he could possibly identify his mom from this distance."
Preferred viewing distance. Definition. "The most comfortable distance for viewing a detected form." And here's an excerpt from the report. "From between three to five feet away, N was able to hold his gaze on his mom for approximately two to four minutes."
And this gives us information on where we need to have materials, where a person needs to be in order for a student to react. And this is all critical information for us as we work as teams.
Oculomotor functions. This is what we have talked before. We talked about fixation. This is all on your PowerPoint, so I'm not going to read all these items. Accommodation, tracking, shift of gaze, scanning, eye preference. Sometimes the eye preference is the most difficult thing for us to work with. And a lot of our information we get from this book, Look At Me: The Resource Manual for The Development of Residual Vision in Multiply-Impaired Children. Some of you may have it. If you don't, I think this is currently out of print. I'm not sure it's available anymore. You may want to contact Salus University to see if it's available. It may be, but I'm not sure. My copy is from 1990, so I still use it.
Systematic presentation of visual stimuli. Choose environments that afford best performance. Start with natural light, darkened room with no response. Additional light on viewing objects. You know as TVIs we always carry a whole bunch of stuff. We are fortunate that we are able to control lighting in most of our rooms, so that's always a good thing.
And the goal is to document visual potential in optimal conditions. Information from observation should tell us what to eliminate from this process. So observations will tell us that we need to eliminate complex backgrounds, et cetera.
So when you're doing your direct assessment, some of the tools that we use would be the Roman-Lantzy CVI range. And there's a comprehensive model assessment in the Dutton-Luecke book. It's a three-tier model. And then there's also, if any of you have heard Mary Smith, The Sensory Learning Kit. A portion of that has a functional vision observational assessment within it. And so some people also use that.
But here typically for the kids that are in the earlier phases we use the CVI Range. And like I said, the TVI is always the lead, but you're going to find in certain places there's other people who have CVI endorsements. There's other people who have taken the Roman-Lantzy class and have worked with a lot of kids with CVI. And they also can help to score the CVI range in different environments.
They can do reassessments that will help keep the team on track. Because the TVI can't always come back. Like Rajiv said, three to five times a year he may do a formal reassessment. But I'm reassessing that student almost every single time I have that student. Constantly looking at what her vision is doing. How can we progress them if they're starting to meet some of those goals?
So the CVI range, just quickly, I have four slides. I have four slides. The first one, it just talks about the range-- for those of you who haven't used it, it's for infants to adults. You can use it on anyone. You're identifying the presence of visual behaviors that are associated with CVI, and you're determining what degree do those characteristics interfere with visual functioning.
And so you'll see here this range. It goes from zero, which is no visual functioning, to 10. That's the CVI range. And you're plotting some points on that range to figure out where the child is functioning. So the behaviors in the Roman-Lantzy CVI Range that you're looking at are listed here. And if you have the book and you learn to administer it, these are all of the things that you're looking at on that range.
And so the range you come up with two different rating scales. And so there's one that's across CVI characteristics, and there's another that's within CVI characteristics, and you have the score each one. And these two ratings come up with your final CVI range. And so your range, depending, and when we talk about our case study we'll go over that more, is going to tell you if they're in phase 1, or phase 2, or phase 3.
And the kids that are up on these higher functioning ranges, 7 to 10, that's phase 3, they actually have an extension chart in the Roman-Lantzy book that allows you to gather more information. Because as I was telling you before, some of those kids are pretty hard to tease out what's going on, because they actually have better vision, but there's still some processing things that aren't right with those kids.
And so you can get more information and you can plot that on the charts that are in that book for those kids on the extension chart. So just so you know that does exist.
And also the CVI range has gone through testing, and it has been shown to have very high reliability, which is important for any tests that we're going to use. So as I said, you get to three phases, and here's the score. Zero to three is phase 1. 3.25 to 7 is phase 2, and 7.25 to 10 is phase 3.
There's a CVI resolution chart where you chart everything on that, and that helps you come up with your IEP goals and your instruction for activities for the child. Because you don't want a program for these children any higher than where they're at, because they will fail. You have to program at the level they're at.
And actually I have-- I don't know if you can see this-- is a CVI resolution chart, if you can see it here. It comes there. You see how it's all marked up. Can't see it very well, but this is from her book. And you literally just circle things and make Xs on things, and it kind of gives you a functioning guide to set your goals.
And then the Dutton and Lueck book has a comprehensive three-tier model that tells you in tier 1 these are the things you're going to test for. In tier 2, tier 2 actually has two different branches depending on how functional the child's vision is. These are the things you test. And in tier 3, these are the things you test. And so tier 1 obviously are more like your phase 1 lower level students. And so it's a different way of assessing the child. And that would be found in the Dutton and Lueck book.
So the written report, we use a template here and we'll be happy to share that with you. But both books have a great samples of report, so either/or, depending which you're using or which method you would like to use that would be a great report to use. But if you do need a template, we do have one, and the importance is you want to, whatever method you're using, whether Roman-Lantzy or Dutton-Luecke, and whatever information you gather-- for example, if you're using a table for Roman-Lantzy, always try and include that table or that graphic of the table in your report so that it's there, as opposed to someone else going back to try to look for that information.
Reassessment. It's ongoing, as I said, three to five times a year according to Roman-Lantzy's book. Lueck and Dutton said ongoing assessment, so it's something that you really want to be aware of. Oftentimes what we have seen from reports that come in from students from other school districts that come into our program here is that the CVI range may have been done once at the beginning the school year. And it's a new school year and that's all we have. So we have to do a lot of work to get to where we are going
OK, so the last 15 minutes, we're to go over a case study of one of our little guys here that we work with, and it will help put into perspective how the FVA was conducted on this student. So he came into our school. He was 6 years old. He had a profound hearing loss. He had suffered from meningitis and he had hydrocephalus. So that's two of the big red flags for CVI.
He was diagnosed with CVI. He also had multiple disabilities from meningitis. Both of his legs were amputated, part of his fingers were repudiated. And this was when he was very young, so he didn't have any language. And so he came to us and here he is again, like the picture you saw in the beginning all he wanted to do, all he wanted to do was find a light source.
And you see him here. He crawled over to this light source. And you can see in the picture he's flicking his fingers. He's looking at his hand. He's simulating his vision going like this. And the other picture prior to that, he had a yellow spinner here. He pulled that over and sat down and he would spin it in circles right there in the light. And that's the only time he would use his vision.
And so when he came in the teacher was really frustrated, because she couldn't get him to sit in his chair. He was crawling all over the place. All he would do is try to crawl out the door and look for a light down the hall. And pretty much that was it all day long. And so we started working with him in physical therapy, and I put him in a stander, and that was the picture you saw previously with him standing in the stander. Because that's how we could kind of contain him.
So when I first evaluated him, and with the TVI we looked at the Roman-Lantzy Scale and he was a 1.75 to 2.0. That's phase 1. And so clearly we knew where he was falling. It was pretty apparent. But we had a starting point for him. So we used the CVI range, and really there was no other FVA. That was the FVA. There was no other testing that could be done on him, because he just wasn't using his vision. Light gazing was really the only thing he was doing other than staring at things that would spin in the light.
So the assessment was completed by the team. All of us got together, and we figured out how are we going to assess him? Where are we going to assess him? I'm going to put him in the stander, because we needed to contain him. He didn't have any hearing, he didn't have any language, so that made it even harder. It was all basically observation.
We did talk to the family. They were just frustrated. They didn't even think he would ever be able to really use his vision.
There wasn't enough information in the eye doctor's report, because the eye doctor was not able to assess him properly. So the report came in with CVI with a whole bunch of question marks around it, and that was it. And we didn't have anything on the eye doctor's report.
Right. So what we did, what we figured out was that he liked working in the dark, and he liked bubbles. And that took us a lot of hit and miss of trying different things. And here he is with the speech therapist. And we had a light, a blue light that we were shining on the bubbles. The blue light seemed to illuminate the bubbles the best, and he really liked that. And that was the first time we really started seeing him attending to something.
And I don't have a picture of it, but he would really turn away for a long period of time. He would use his vision for very brief periods of time, and he was fatigue really quickly, but that was the beginning. And so in the classroom we couldn't even really get that from him. We were having to start in a totally different environment just to figure out what can we get from him and how can we get him to start using his vision? And that's what we did.
As you see here, we moved the bubbles later to a room which was lighted, and you can see how he's using his vision. His field loss. He likes to lay on his back. He's turning his head up to look at those bubbles. But he really, really liked the bubbles, and we had to use that as a motivator to try to see how his vision was functioning in other environments. Because we knew we could get him to respond for very short periods of time with the bubbles.
And so, again, this is all an ongoing assessment. The FVA was started with that baseline number. But still it's an ongoing process. And you'll see here we found out that initially yellow is his favorite color. He liked the yellow ball because the ball moved. So those are all the things that we had to work with, with him.
Yeah, and not counting the bubbles, but in one of the situations he had dumped out a basket of balls with different colored balls. And he consistently found the yellow ones.
Yes. All right, so this one here, this is a little later, but I put this in there because fatigue is such a huge issue. You can see here I had him just for a few minutes working. I was trying to get him to put his finger in the hole and he had-- you guys are probably familiar with this thing with the wooden dowels that go in there-- trying just to see if we could get him-- and I mean after a few minutes he was done. He was fatigued.
And so those are the things that we have to communicate to the team. I'm trying to push him a little bit to see what we can get from him. And then this is what we get. He just kind of poops out on us. So as we were going on, we were consulting with the TVI the whole time, and so as he was progressing, what we were trying to do is move him more 2-D material.
Now we had reassessed him a second time, and at this point he was at 4 to 4.75 on the CVI range. So he had moved into phase 2, now that we had been working with him throughout the year. And so we were adding color. Now you can see we're adding red. He had been just preferring yellow and we were working with red, adding a second color.
Fatigue was still an issue in phase 2. Controlling the complexity was a huge issue for him in phase 2. But wanting to start to introduce those 2-D models to move to a more functional use of vision. And that's what happens in phase 2.
So the speech therapist and myself and the TVI, we were all, including the teacher in the classroom, but we were first in our controlled environment trying to introduce these 2-D materials so in his classroom he could identify his picture and put that he was there for the day.
But we had to actually start with a silhouette of his head, because he wasn't really wanting to look at faces. And so you'll see we started with I think a 4 by 4, because Rajiv was kind of guiding us on size. And then eventually when he started to actually look at these, he had us cut it down to 2 by 2, and we moved him into even smaller pictures as he was progressing.
But those are the kind of things that we do in consultation with the TVI. And here you can see the third reassessment we did of him, he was at 5 to 5.5 on the CVI range, and here we were trying to introduce more colors, more complexity.
You can see that in this picture we have his friends' pictures in his classroom now, besides his own picture. He still tended not to look at those. He would often take them off and throw them, and he would want to just look at his own picture.
But we were trying to introduce some of this stuff as he was willing to look and use his vision, as he was resolving. And in Roman-Lantzy book you will see the ideas that she give you. And so even though this is more talking about intervention, it also goes along with reassessment.
Because you're reassessing, and that's why you need a team, because as a TVI or an O&M, or whoever is doing the lead, you can't be there all the time. Unless you have the luxury of being in that classroom every day, you can't really be doing a lot of this. You can be telling them and consulting, and they can be consulting with you, but you have to have these team members that are actually implementing these changes.
And then here, this is him now, when he's actually ready for a new reassessment. We haven't done it yet, but you can see he's really starting-- this year I was so excited when he came back, because he's actually starting to use his vision more. I mean he really still likes balls, but now he's using a purple ball. He's throwing into a hoop. And that hoop, actually I put a red rope light around it. I don't have it in that picture, but it seems to work better for him because again, we're still in phase 2, so we're still using shiny objects and light and things to attract his attention.
But he's starting to show more purposeful play. He got onto that platform swing himself and started swinging himself. I was like, oh, my gosh. Even though it still involves movement, and so he's still getting that visual stimulation, but last year he would have never done that. So you know it's these kinds of changes as you move forward, you continually do that reassessment.
And as a TVI, you come in, you get that initial scale, Roman-Lantzy scale. That may be all you can do, and that is your FVA. And if you read Doctor Roman's information, she'll say the FVA is often just the scale, and that's all you can do to start. And that's fine, because we know the baseline, and then we move from there. And we continually reassess them and show that progress, and structure our intervention based on those numbers and those phases.
And just be aware that when you do use the scale as your functional vision, your FVA, make sure you write a written report to reflect that. Because just having that data sheet in your file is not going to make sense to anyone, especially those of you that have online IEP programs, et cetera.
It's really difficult when you take that data and infuse it into your IEP, because if there is an audit-- not going legal on you-- but if there is, they're not going to take that information that's in that IEP per se. They would want to know where that written report is. So always make sure that you have a written report.
Right, and I also want to add that you want to state that you weren't able to do any oculomotor testing. At some point like now with the student, eventually he's going to get to the point where Rajiv is going to be able to start doing more of that sort of testing. But in the beginning, it just wasn't possible because the CVI was overlaying everything.
So you kind of just have to take it step by step, depending where they're at. And I often will tell Rajiv, hey, this is what he's doing. Do you want to look at him? Do you want to see what you can get out of him now? Maybe we can do a little more.
And I will tell you, right now we're still struggling the distance viewing. He's still in phase 2. Well, I'm going to reassess him, but that's a real challenge. He's just not using his vision really for any distance viewing yet. So that's something Rajiv's going to have to help me figure out--
And you want to educate the team, oftentimes what happens is a lot of folks don't know what an FVA is. I'm not talking about the be VI folks, but folks outside of our field. They don't know what LMAs and the eye reports. What do they mean? Just an eye report. I don't need that info.
But that's all critical for some of our kids who have multiple disabilities, right to include kiddos with CVI. Teach them about the findings within the areas that the team can be of assistance to you. The team is always important. And if you form together the information and then walk your team through the process, what are we going to do next, we always have a recap after we finish and say, OK, next time we come out, this is what we're going to do, so that we're all on the same page.
And for us it's a little easier because we do have email. We do have close relationships with the folks that we work with. That is easier for us to do that, including our eye doctors. And then distribute and review the final report to all team members. This is what we came up with. And oftentimes that report could be a joint endeavor. Everybody writes that report. And that's OK. If that's the case, then that's fine. You just have to come up with a plan.
And I also wanted to add quickly, because I don't have time for questions, but most physical therapists or therapists in general do not know how to work with kids with visual impairments unless they've had training or if they worked at a school where they had that experience. So you may have to take that lead on doing some education and teaching them. And hopefully if you have a team you can build that team and those people will go out and get some education and learn more about how to work with these kids. It's not that common, so just know that you may have to be the one to take that lead and to teach them about some of this stuff.
And we've listed our references here. So we're not going to read them off to you, but they're on the PowerPoint. We have quite a few references. And good luck collaborating and thanks for your time, and we hope we've shared some information.
Thank you both so much. This is what we've agreed to do about questions with our presenters, because we are out of time, and I know some of you have been posting questions. But Rajiv and Joanne have offered to take the questions offline, and with their answers we can create a sort of Q&A document that we'll be able to distribute with the webinar materials.
So I would encourage you to go ahead and post questions if you have them. And I don't know for the two of you whether you have time for a couple of questions and comments. It's right at the top of the hour right now.
A couple things for just sort of housekeeping things. Rajiv, you had mentioned when you were talking about Look And See [sic] that you thought it was out of publication but that you could check with a specific university. Could you name that?
Yes, Salus. It was originally published through our Pennsylvania College of Optometry. So I would check with Salus University
Great, that's spelled S-A-L-U-S. Spelling for the captioner.
And several of you asked about the forms, a couple of forms that were referred to. Right now on your screen there is a pod that says Files To that has components of a functional vision and a team interview form. You can actually download those right now if you want to by selecting them. And when you select them, you'll see a Download File button.
But these will also be available on the website tomorrow with the recording. The PowerPoint is there now, and if you wanted to, some of you have needed to download that to follow along. That would be fine. So I answered that.
Someone chimed in and said Look At Me is available through Salus and gave us a phone number, so thank you very much. We'll put that in the information document. Really thoughtful for you to share that.
Your case study was really interesting, as we've talked about putting this together, the uniqueness of children and their condition, and it's always good to talk through someone's story. A lot of us have been trying to find more experience with kids at level 3.
Tracey had asked, "Do you know of any case studies or post information about a child in level 3, phase 3 CVI, that might be useful? Go ahead.
I always go to the Dutton and Lueck book, because they have the best information I've found thus far. Now I do know that Dr. Roman-- I've heard it through the grape vine-- is publishing a second book and it's going to have more information on that sort of thing as well. So I think the professionals, so to speak, kind of know that a lot of us are struggling in those areas. You're not alone. Because I find that very challenging as well.
The Dutton and Lueck book is my go-to, and they have a lot of examples in there. But I don't know, Rajiv, do you know?
No, I don't know. Like I said, here are the two resources that we have are our go-to. The Dutton-Lueck is phenomenal. They have case studies on it too. So you know I would review those chapters and the case studies and the samples of the report. If you're struggling with that case, that's really good information in here. And so is Dr. Roman-Lantzy book too.
Because we use a combination of the two, depending on the student, based on our observations and interviews.
Yeah, absolutely. Both of those are really good resources. We have learned quite recently from AFB Press that version 2 of Christine Roman-Lantzy's Cortical Visual Impairment is due in spring, and there are some other resources being put together as well.
Kerry chimes in she found the book on Amazon, so that's also available. Many of the books put out by AFB press are also available electronically, which not only makes them accessible but you can get it right away.
And those of you who are working for agencies and you have a large VI staff, I think if you buy five books from AFB of the same you get a huge discount.
We have a lot of thank yous coming in, so I don't want to discount those. A lot of people saying thank you as they sign off. We were at capacity today. If you hear your colleagues complaining that they were closed out, the room did close at 100 participants, and we apologize for that. But as I said, please let them know that this has been recorded. It should be available as early as tomorrow.
And all of the PowerPoints and the handouts will be available on that website as well. Those of you who registered ahead of time will get a follow up message from us that will include all those links. We'll also include a survey. So we love to hear what's working for you, what we could be doing better, and other topics that you're interested in.
I'll ask one quick question about your case study, and we'll make that last question. Mark is asking, "Did you notice an increase in your student's ability to use his hearing/"
No, he had absolutely no hearing, unfortunately. And it's the damage from the meningitis, so he'll never-- it's profound. So that the only good thing is for CVI we don't have to deal with that component of the environment, so that's one issue because he doesn't have any hearing. But obviously for him that's--
We have to take that into consideration when we're doing all of our planning, but this particular kiddo, hearing is impacted quite severely. It makes it hard, because he doesn't like to-- signing, he'll look at people moving their hands, but it's very difficult because he doesn't really see faces, so there's a lot of challenges when it comes to signing
So the signing piece was very difficult to begin with and continues to be. It's improved a little bit because he's actually looking at people now, but he was never when we first started.
He's starting to use some basic signs, but that was a challenge. But unfortunately his hearing is not even an option.
And this is where that piece that we talked about, the three types of acuity, is going to be critical. Because from a functional standpoint, you'll need to know where to be--
Did you have a teacher that was Deaf and hard of hearing on his team?
Yeah.
So one more area of collaboration. I'm going to let the two of you go back to your teaching, but Valerie, let's leave the room open for a few more minutes, so if people do want to post questions they can go ahead and post them. And let me thank you all again for joining us, Rajiv and Joanne, for this two-part conversation. On behalf of my partner, Valerie, who runs the scenes behind the curtain, Dr. Mary Zatta, and all of us are the Perkins e-learning team, we'll see you next time. Thanks.
Thank you.
Take care.
So you guys can just log off. There we go. So we'll just leave it open for a few more minutes. Questions are slowing down, but that way we can send them back. Thank you. I did see that captioning had to drop off. I forgot that that was going to happen.
And Val, I'm also in as a host if you need to drop of feel free I'm just I'm going to write my thank yous and take the rest of these questions.
Yeah, the book they refer to as the bible is Foundations of Low Vision. I answered that in the individual question and we'll put it on whatever kind of Q&A document we make out of this.