TRANSCRIPT
Perkins CVI Updates 
2/24/25

>>Kaitlyn: I am at The CVI Center at the Perkins School for the Blind. I am sure a lot of you are a part of our communities or get our updates and our newsletter. But today I am going to share a little bit of information about the Perkins CVI Protocol and kind of the main overview steps to completing a CVI assessment using the Protocol. And then I'll share some news and updates that we have going on at The CVI Center and resources and upcoming events that we are planning. So here's an overview of what we'll talk about today. And you'll see as I go through I'll be sharing a lot of QR codes over on the right side of the screen, so feel free, if you're quick enough to capture that QR code, those will take you to the sites that I'm talking about and so you can have those links right there for you ready to explore after the talk. And you can also find most of the resources that I'm going to share just on CVINow.org, so when in doubt, head there, and that has a bunch of different things you can access that I'll be discussing today. Okay. So components of the Perkins CVI Protocol. And I should say too Kaycee might have mentioned this already, but if you have any questions throughout, just put them in the chat and after each section we'll pause and be able to take any questions you may have. And if I can't answer them, one of my colleagues surely will be able to so we can get back to you or you can reach out to us directly. Okay. So the Protocol is a, as I said, it is a protocol, a process to conduct a CVI assessment on a student. The general workflow is diagrammed here in this image. And essentially we walk you through all of the steps that we believe are necessary to conduct a thorough and robust assessment for CVI. So first steps involve doing a file review, seeing what the student's background is, any medical, educational history that you know of. Asking the parent or guardian to fill out a student portrait form, which is all background information from their perspective. Conducting face-to-face or virtual interviews with the parent or guardian and the child's school team. So that would include anyone that's a part of their educational team that's helping in the classroom. Conducting observations, conducting the direct assessment. And then all of these things pool in together into a robust CVI evaluation report that will include recommendations for accommodations and interventions that, based on your assessment, that seem to fit the student that you're working with. So all of this is included in the Protocol itself. And when you go to our website and download -- you can fill out a form on the website to be able to download the Perkins CVI Protocol. And what you'll get is a zip file to your downloads folder. That includes two parts of the Protocol. And these are both in Word document format. So part one is the introduction and essential components of the Perkins CVI Protocol. That's going to have all of the steps outlined for you. It has several different templates that you can use throughout the process. It has quick start guides, checklists, and also an introduction -- very robust overview of kind of our philosophy behind creating the Protocol. And so that has everything you need. Part II is supplement ri guides and templates. This is -- part II is a document that is chock full of resources for, you know, extra, looking more deeply at the assessment process, beyond just kind of the how-to of conducting an assessment, it gets from moving from assessment to intervention and how to implement different accommodations that you have identified for your student. And just recently, so the Protocol was officially launched in September of 2024. So we've been out there for a couple of months now. And just recently in January we put up an updated download folder that includes an appendix. And that actually includes all of the templates that you'll see in the Protocol as separate Word documents so that you can actually just open any template. For example, if you're doing an interview with a parent, you can open up the parent/guardian interview template and just type all of your notes or anything that you're working on with that student right in that template document. And you'll be able to separate it out per student, rather than having to save all the documents into separate files. So, I'm going to go through an overview of the steps, the essential ten steps of conducting a CVI assessment using the Protocol. So the first step is preparation. And you'll notice in part I of the Protocol there are several -- a whole section that's, as I mentioned, an introduction and explanation of the foundation of this protocol process. So that is all wrapped around our philosophy of the 16 visual behaviors of CVI. You'll see that in the diagram here. We have kind of a grid with 16 squares that are all representative of different aspects of -- that can be manifested with CVI for students. And we encourage you, through the Protocol, to evaluate each of these 16 things to see how they are impacting the student with CVI. And in doing so, you can get a real big picture, holistic view of the student and then be able to develop your accommodations. So and then we are also very passionate about including compensatory skills as the foundation of the Protocol as well. So just noting that students may not be relying on their vision as much as they are relying on other types of strategies, compensatory strategies, other senses. And those all kind of factor into the full picture of how they're learning in school and at home. And navigating their world. So step one is preparation for a reason. We really encourage everyone who's starting out using the Protocol and exploring it to really dive into this kind of foundation philosophy that we have. And really understand the 16 visual behaviors in order to get the most out of the Protocol and conducting the assessment. Step two is the file review and the student portrait. So as I mentioned, these are kind of gathering background information on your student. So, you know, conducting a file review, seeing their medical history and any other medical diagnoses they may have that might be contributing to any, you know, issues in the learning environment. In addition to student portrait, which is a separate form that we ask that you send to the parents or the guardians of the student to fill out on their own. And this can be done on an online -- there's an online form and all of these instructions for how to access that are in part I of the Protocol. So there's an online form that allows parents and guardians to submit the student portrait securely and safety with data security compliance directly to the TVI or the individual conducting the CVI assessment. So this is going to include a lot of background information about the child and I know we acknowledge that this might be kind of a difficult thing for the parent or guardian to kind of reprocess a lot of information and recall things about their CVI diagnosis they may have. The student portrait is really intended to be something they do on their own and pass along the information to you in that safe and secure way through the online form. And next, once you've kind of gathered the information, the background information, we encourage a one-on-one parent/guardian interview. And that is to say we recommend not sending the questions just to the parent, like you did in the student portrait. Like this is meant to be a guide for a true conversation between you. And we recommend a lot of questions setting the scene, things to follow up on, that really help you get a better sense of, you know, what the student is doing, how they're using their vision, are they not using their vision. Are they relying on compensatory skills. And to really get a good sense of where things are at in the home. So this is like the home environment or social environments, things outside of school that the parent or guardian is picking up on about the student. So in the Protocol part I we have two different versions of the parent interview. And we have a guide as well for kind of how to choose which one to use, if you're a little unsure. But parent interview V as in vision is for a student who primarily relies on vision. And then we have parent/guardian interview C for compensatory skills for a student relying on compensatory skills. So, again, we have a guide for kind of how to choose which one to use. And the real difference is that one, the compensatory skills, you know, version doesn't have questions that are focusing on visual recognition as much or, like, asking questions around your child's using their vision. Because, clearly, they're focusing on other ways to explore their world than vision. So we don't want to, you know, have the parent continue to say, you know, oh, well, they don't look at objects or things like that. So we've tailored a version of the interview that kind of gets at different aspects of their exploration of their environment. And just as well, in part I of the Protocol and also in the templates provided in the appendix now on the download, you will notice these interviews are set up to be able to type in the parent/guardian response or any notes that you're taking during the interview time, as well as a scaled response with interactive selection buttons here so that you can just, as you go through it might be easier for you to mark off things that kind of like commonly-heard answers that we've collected over the years in creating this protocol. That might be helpful for you to quickly check off as you go through. And then we encourage conducting a team interview with the student's core educational team. This could include a classroom teacher, PT, OT, an SLP. Just kind of anyone who is interacting with the student we encourage to gather all of them together to conduct this team interview. Even if it's for 20 minutes. If you can find a time, we know that it's really difficult to schedule these things on top of all the other things that you're scheduling all the time. But we found that it's very worthwhile if you're able to talk about what the student's doing in the classroom all together and see what people -- different people are picking up on from different perspectives of their field. We find that to be a very helpful process in the beginning. And also we'll just note whatever interview you selected for the parent/guardian interview, a V or C, we would recommend using the same one for the team interview. And then the next step, number 5, is observations. And so we -- again, we encourage conducting several observations on the student, if possible. These are, you know, you all know what an observation should entail but just kind of meant to be a fly on the wall, seeing how the student interacts with their environment and how they go about learning and, you know, just kind of what they're doing in different environments throughout the day as well. So, you know, CVI can manifest in many different ways and it obviously contributes as well to fatigue and some behaviors in the classroom. So we encourage you to try to see if you can observe the student in several different environments, several different times of day, locations. And we have a lot of resources in part II, in particular, to help kind of guide -- add suggestions for what you might want to look for in your observation. And, again, these are all just suggestions so these are just things that the teachers at Perkins have kind of developed over the years and have really worked for our team in terms of what to look for. So you may very well have your own list of things that you like to look out for. Feel free to use that too. We just encourage you to conduct several observations of the student, if possible. And next we have plan the direct assessment. I always like to note that step 6, plan the direct assessment, is a step on its own for a reason. So planning is often a step that's overlooked or skipped in a lot of aspects of our lives. But we really encourage you to sit down and use the templates and the resources that we've created for planning a robust assessment, really focusing on all of the things that you've identified so far through the student portrait, the file review, interviews, observations, and everything that you want to do for this assessment to make the most of your time and of the student's time as well. You might have identified some priority concerns, some of the 16 visual behaviors that really you think have an impact on the student or their CVI has on the student that you really want to focus on. These planning documents allow you to kind of just sit with everything for a second, think it through, you know, make sure you have all the materials that you need. Make sure that you have the time, that you've booked the space, things like that. Which, again, I'm sure all of you are used to doing but we just found it's nice to have on a checklist, to have that as a separate step that you're really trying to be thoughtful about what you're going to do with the student. We also encourage you to think about the student's interests and motivators in this step. So you might have learned from the student portrait or from the interviews that let's say a student really, really loves the show Bluey and you might want to incorporate some characters from that show in your direct assessment so they're more motivated to keep going or they have something that they can recognize and that's familiar to help them just feel comfortable in the environment as well. Those are just some tips that we've included. And then step 7 is actually conducting the direct assessment. Similar to the observation step, in part II of the Protocol we have suggestions for what to look out for while you're conducting the direct assessment, based off of each visual behavior. So as you get to the observations and direct assessment steps, this is where we would encourage you to start really honing in on those visual behaviors because those are going to be how you differentiate different sections of your report. So it's great to think about these things ahead of time as you're going through some of these different activities so that you aren't stuck report writing with kind of just a bunch of notes that aren't connected. We really encourage you to try to, you know, separate it out into the 16 visual behaviors so that it's a little bit easier for you to synthesize your findings when you get to the report. So, for example, here for the direct assessment we have impact of color, which is one of the 16 visual behaviors. So in your assessment, the objective to see how color is impacting the child or the use of color affects their CVI or their ability to recognize things. The objective would be to assess how and if color impacts their ability to tend to or recognize their items. And then we have several things to look out for to help you hone in on what is happening when it comes to color. And then step 8 is kind of a monster step but synthesize your findings: Report writing. So in part I of the Protocol as well as in the appendix now of the download, we have a CVI evaluation report template. And so you can open this up in the appendix folder and you'll find a full template that has a lot of text already filled out for you that we hope is helpful to set yourself up for creating a really robust and holistic report that shows -- that provides space for accommodations, recommendations moving forward. The kind of -- the real meat of everything, the so what of doing all these activities. And it allows you to go through the whole process and say here's what I've noticed from all of these different angles that I've looked at CVI and the student and here's what I would suggest we do about it. We're hoping this report template really allows you to, again, pour all of your findings into this one place, kind of funnel them together, and separated out by visual behavior so that you can give the rest of the team like a really robust understanding of this student, what they're motivated by, what works for them, what doesn't work for them, and be able to move forward and hopefully get them better access to learning. You'll notice in the report template as well there's several areas that have red text. And those are meant to be kind of guiding text for the TVI or the assessor as you go through. And you can, you know, delete it here and there or choose one paragraph over the other, just to hopefully make it a little simpler for you to go through. And in the report writing section we also include a doctor letter template. So this can be used at several different points in the assessment process. If you suspect a student has CVI but they don't have a diagnosis yet, this is something that you can use and fill out based on what you know about the student, and provide it to the parent or provide it directly to a doctor, whatever. I know there are different protocols in different countries for this but this is kind of like a way to recommend a diagnosis of CVI for a student. And so, again, this can be completed kind of before the full assessment happens, maybe after the file review or after the student portrait. And it can also be completed with the report itself, just as an extra resource for the parents or guardians to be able to just show this is what I suspect based on the full assessment that I've done in the educational setting. And we include a lot of different resources throughout parts I and II for writing the report. We know that this report template is hefty and we know that there's a lot that goes into it. We know that timing and scheduling is of the essence for all of you out there. All of you teachers and so we acknowledge all of that. It can be tough to get everyone to sit down and really hear you out with all of these things. We do recommend -- there's a couple of different ways that we found helpful to kind of better synthesize the information. We have an executive summary template as well that we have provided that folks have found to be very useful to kind of really just -- if you don't have any time, just here's what I noticed. Here are the things we should prioritize and focus on for the rest of the team. Hopefully these will also help you to separate out all the different things that you've learned. And step 9 is choose your recommendations. These will hopefully go into the report itself. But this is a big step as well because this is the "so what." This is the part of the process where you're really going to hone in on, you know, what you need to do for the student. What other educators on the student's team may need to implement in order for them to have the best possible outcome. And in part II of the Protocol you'll find many -- I think it's about a 100-page section, which is a lot, we know. But, again, there's so many different manifestations of these things and so many different things that you can uncover in learning about a student with CVI that we wanted to make sure we're providing you with as many resources as we can. So this whole section of part II is kind of an ongoing flowchart. So this is intended to walk you through the assessment findings all the way through intervention in the classroom or at home. Breaks down each visual behavior and just based on, you know, experience that our teachers have had at Perkins. We've identified many things that could be a possible finding that you see in the interview or in observation. And here's what to assess. Here are some tips for how to assess it. And then, based on that, here are concrete recommendations and concrete accommodations that you can use -- sorry. Sorry about that. That's my dog. Obviously. So here are the things that you can use in the process for different accommodations and ways to implement things in the classroom. You can copy and paste all these things into your student's report or you can use them as a jumping off point to tailor them and customize them to your student as needed. All of the things in here are suggestions and even if they spark an idea that you might have, you know, that's great. Don't feel that you need to use all of these word for word. Again, this is the accommodation section of the report template so there's all space for these things to break them down piece by piece when you're writing your report. And the last step, number 10, is share assessment findings. So, again, very important step. We have an executive summary template that we've provided where you can break down your findings of the assessment into different global forms of impact is what we've called them. Just kind of four different areas that CVI may really be affecting the student and what are your considerations for how to apply accommodations for them. We encourage setting up a time where the entire team, parents, guardians, education team, administrators can meet and you can go through what you found and really justify and backup what you are recommending to the team. So I'll pause there. That is my run through of the Protocol and kind of how our philosophy of conducting CVI assessments came to be. So I'll pause there. If there are questions, Kaycee, I know you have been looking at the chat. Happy to answer any questions. 

>>Kaycee: Perfect. We have had a couple come in. I shared the form from your website for people to request the Protocol, because people were asking about that. Then we had a question related to that come in. So if folks have the Protocol from the fall prior to the appendix coming out, do they need to just complete the same form again to get the appendix or is there a different process to receive the appendix if you already have the Protocol? 

>>Kaitlyn: Great question. You can go and sign up again. Just fill out the form again and ugh automatically get an e-mail with the new download and that has the appendix. We also did send out an e-mail to all folks who filled out the form, initially, who might have had a previous version of the Protocol without the appendix. We sent an e-mail out in January out to everybody who has ever downloaded it. That includes a link to the new updated version with the appendix. If you had downloaded it before, you should have gotten that e-mail where the link is right there. You don't have to go back and fill out a form again. But if that went to spam or you can't access it, you can always go to our Protocol website and download it again. 

>>Kaycee: Perfect. Another question came in about the online parent interview. Tonya asked when the online parent interview comes back we receive an e-mail to access it. This does delete after some time. Is there a way to save those parent responses? 

>>Kaitlyn: So the link -- another great question. Thank you. So the link that you receive -- this is referring to the student portrait, I believe, is an online form. And there are a lot of steps to complete this and just to ensure we're creating a closed loop of security. Because we know parents are sharing, you know, medical information and history. So we want to make sure that we're doing everything on our end and complying with all the security measures. So you will eventually get, when a parent submits and confirms that they have submitted the form, you'll get -- the TVI gets an automatic e-mail with a link to Zix port which will be holding the submission as a PDF. So that link, I believe you have two weeks to click on that link. But once you've created an account in Zix Port, you should have access to that PDF. It should be stored there for however long you need it. So if you're able to get into Zix Port, you should be able to access all of your student portraits from there. And if anyone is having any trouble with that process or the PDF is deleting before you have a chance to download it, then please e-mail us and we'll see what we can do to troubleshoot the process. Kaycee just provided the e-mail again. CVI Protocol @perkins.org. 

>>Kaycee: We had one other question saying when trying to open 8, the synthesized findings, there's an error saying Windows can't extract it. Is that a widespread issue or just something on that user's computer that's having issues? 

>>Kaitlyn: I have not heard of any other issues. I'm assuming you mean for the templates appendix folder. It seems we have at least one other person not having the issue, so that's good. I haven't heard of anything, actually. Folks have been e-mailing me with issues here and there that we've helped troubleshoot. It might be something with the version of Microsoft Word that you have. I'm not sure but if you're unable to open it, again, reach out to us and we'll see if we can troubleshoot with you. I would see if it's doing that for other template documents as well or if it's just the report that would help us to figure out what's going on. 

>>Kaycee: Perfect. And that is all the questions so far. 

>>Kaitlyn: Great! Awesome. I will keep going then. And please feel free to continue asking questions. I just have a couple more slides to share about recent updates and upcoming events that we have going on through The CVI Center. So recent updates. As I already mentioned, we have the appendix folder now in the Protocol download. The biggest kind of win here in my mind and according to user feedback is that all the templates are saved as separate documents so that you can actually go through all of those and, you know, we've had folks who really recommend saving each template as the student that they're working on. Or just the ability to kind of open everything in different documents and not have to extract from the workbook file itself, which is over 100 pages long. People have found that to be very helpful. Hopefully it's just a smoother process for you to be able to actually conduct the assessment using the Protocol. We also have the parent portions in that appendix. The parent-related templates have been translated into Spanish and Portuguese, which again was a high-volume request from folks who have parents who primarily speak Spanish or Portuguese and able to share those documents with them now. And we are working on a process for other languages to be translated as well. So if you have any requests for translations or if you're thinking about translating part of the Protocol, please e-mail us. We're working on a process to make those available because we know that's a big issue across the world. And the student portrait is now GDPR compliant. It always was HIPAA compliant. GDPR is specific date of privacy for countries in the EU and UK. It's a little more strict than some of the regulations we have in the U.S. where the Protocol was created. So now the online form for the student portrait has all the compliance for data privacy, so you should be all set knowing that the process of where the submissions go is secure to get to you, the TVI. And we have a QR here for a Protocol feedback survey. And this is how we really are able to improve upon the Protocol, make new iterations, offer new training opportunities and resources and things like that. So we really do -- my main job is to listen to you. So I am all ears. Really encourage you to fill out this survey if you've taken a look at the Protocol, if you've conducted an assessment. And share what you're feeling. We know this is a very robust process. It's a hefty document and we know a lot of folks out there are just digesting things and figuring out how they can weave these different components into their CVI assessment process. We want to hear from you. We want to know how we can make it better, easier. And we're always looking to improve. So please let us know. Fill out the survey. We're always looking to update things so we really take what you say to heart and you won't hurt our feelings. But if you like it too, that would be great to know. Yeah. So please share. And we have some resources to share as well. So hopefully a lot of you, if not all of you have heard about Perkins Academy. This is a new online learning platform that launched in January. One of the courses has been available since September but there are four online courses available about CVI. And if you take all four of them you can get a certificate at the end showing you have taken the courses. And all of these were created with certain students at Perkins. If you take these courses, it's an enriching experience. You get to see videos of actual students with CVI and how the Protocol is implemented in actually conducting an assessment and how to synthesize the information. These are really, really rich courses and so we encourage everyone to continue their education of the Protocol and CVI and take these courses. So this QR code here is what's going to take you there. And then some other resources that we have. So I'll actually -- I'm going to just switch over here and walk you through some of these. So the educator hub on CVI Now is a fairly new resource that we have developed. This is the protocol, as you all have a link to that now. So this is how to learn about the Protocol. If you scroll down, fill out this quick form. Once you submit it, you'll get an e-mail with the download link. So just a quick aside about the Protocol. The CVI Now educator hub, this is a fairly new resource that we've implemented. This is where we would love for educators to come and learn about all the things that we're offering. Have a central place to go to learn about CVI or to share CVI resources with parents or with clinicians or other members of your education team. One central place to go to learn about all the things we're doing at The CVI Center. Here you'll see we have all of our upcoming events in one place. You can click on any of these to register. We have a lot of different virtual offerings coming up and all of these are led by my colleague, Nicole Homerin, who runs really, really great conversations, coffee and connects. Some formal events about CVI and also some informal events that you can join and just kind of express what you're going through on that day. They've been really beneficial for a lot of educators. So I encourage all of you to join those. And we have some other offerings in the community. This is, again, just where you can go for a one-stop shop to explore everything you need to know. And then we also have the Perkins CVI interventions library. This was also launched in October. We did a webinar about this a few weeks ago. So that should be available on the educator hub to watch the recording. We're hoping this becomes a community space where you can actually submit ideas for interventions and be able to share them with your community. So these are, if you click into any one of these, you'll be able to see a robust idea for an intervention that has worked for another educator. And all of the different considerations for the intervention, examples, and any further research about that area for CVI. So this is a really great resource and, again, you have a chance to submit your own CVI interventions and get continuing education credits for those. We encourage you, if you have an idea, let us know and we can go through and publish it on the website. Finally, we have a new initiative for in-person workshops. So The CVI Center is coming to you. So we have a few workshops planned over the next few months where it's going to be -- they're interactive, building expertise with the Perkins CVI Protocol. This is Zeke, he's one of the students at Perkins. He is featured in the workshop so you get to actually go through a full assessment done by folks at The CVI Center with Zeke. And you really get to see all the manifestations of the Protocol and visual behaviors and how we break everything down. It's a really, really great experience and we're coming to different locations. We were in New York in February. In March we'll be in Austin, Texas. In May we're coming to Baltimore, Maryland. Be on the lookout for these events. We have gotten great feedback so far. It's a really great way to connect with colleagues and join and really learn in a hands-on way how to go through this Protocol process and the benefits of using it. So those are just a quick run through of our resources and, again, QR code for the educator hub. And we also have some upcoming events, as I mentioned, March 31, in-person workshop in Austin, Texas. Be sure to register for that. These are some dates for other upcoming events, including some coffee and connects through the CVI educator hub. We have CVI for the TVI is an ongoing webinar series that we put on. And we also have a few other webinars coming up. We would love for you to stay in the loop and join us, if you can. We have a lot going on at The CVI Center and there's a lot going on with CVI in general. A lot of new research has come out in the past few months. So we're trying to distill all that information and get it out to all of you. That's what we have. 

>>Kaycee: Perfect. This is Kaycee. We did have another question come in related to research. Asking if there's been any research conducted on that doctor letter that you showed us. Like if there's been an increase in diagnosis of CVI with TVIs using that doctor letter. 

>>Kaitlyn: That's a great question. I don't know. We haven't been tracking that, per se, in terms of the cause and effect of the diagnosis rate. But that's a really good question and I'll take it back to the team because it would be really great to know what the effects have been of that. Let us know if you have gotten a diagnosis from writing up a doctor letter or conducting the Protocol. 

>>Kaycee: Perfect. We had some specific questions about if folks are wanting you to come to their area for training, do they just e-mail that e-mail address that you shared earlier, to get details in setting that up? 

>>Kaitlyn: Yes. That would be great. Definitely reach out if you think there's a good population in your area or if you can't make it to one of the ones that we have upcoming, please let us know where you live and it could be an ongoing road show to come to you and be an in-person, hands-on workshop. Let us know. 

>>Kaycee: Perfect. I think that's all -- can you put back up the QR code where people can register for the in-person workshop in Austin. I think it's the slide before. 

>>Kaitlyn: Yeah. So let me we have this QR code here will lead you to the workshop's website. And that's where we're going to have all the blocks for upcoming events. And Austin is there. You can just click "get tickets" and that will bring you to that event page. 

>>Kaycee: Perfect. We had another question come in about how does the team come up with the specific 16 visual behaviors that the Protocol uses? 

>>Kaitlyn: Yeah. The 16 visual behaviors were again like the foundational philosophy of the Protocol. Those were in development for years and years prior to developing the Protocol. Based on the current research, conversations with experts in the CVI field came up with 16 concrete ways that we have seen CVI manifested. So there's some background information on CVI Now about how those were generated and a lot more information about each one. But all these things, you know, were through years of ledger and speaking with experts in the field to come up with those 16.