TRANSCRIPT - Cognitive Evaluation for Students who are Deafblind: A Panel Discussion Regarding Best Practices Ð 3/18/24

>>Rachel: I am one of the Deafblind education consultants here with the Texas Deafblind Project. And I'm going to pass it on to Kaycee. 

>>Kaycee: Hi. I'm Kaycee Bennett. I am also one of the Deafblind education consultants on the Texas Deafblind Project. Edgenie. 

>>Edgenie: Hi, everyone. I'm Edgenie Bellah and I serve as the family engagement coordinator on the Texas Deafblind Project. Brenna. 

>>Brenna: I'm Brenna Brillhart. I'm an educational diagnostician and certified teacher of the deaf. I get to travel through 12 different school districts to be on an evaluation team for students who are deaf and hard of hearing and Deafblind. 

>>Rachel: Okay. Brenna, you are going to have the first person I'm going to ask questions to. What are the legal requirements for cognitive evaluation within the FIE and what does the law state? 

>>Brenna: So I have prepared a very Texas-centered answer. I'm sure that there are similar laws in other states. But in Texas we have something called the legal framework. It's state laws and federal laws integrated together in one place. Now, it states that children need to be assessed in all areas of suspected disability, if appropriate, including general intelligence, health, vision, social status, emotional, academic, communication, and motor abilities. It also goes to say that the evaluation materials, they need to assess specific areas of educational need and they shouldn't just be designed to provide a single general intelligent quotient number. It's important that the assessments are selected and administered so that the results accurately reflect the child's level achievement and is not simply reflecting the child's impaired sensory abilities. So all of these things need to be considered when selecting an assessment for a child who is Deafblind. 

>>Rachel: So I was just going to ask. So in terms of like what you just stated, you know, and what the law states, how does that impact or what does that mean when we are evaluating our students who are Deafblind? 

>>Brenna: Yeah. So it's very important that whoever is doing the -- any evaluation of a child who is Deafblind, especially who is doing the cognitive portion, that they meet with the TVI and TDHH to look at the child's level of access to visual information, to look at their communication ability, and then also to consider what is that child's level of access when we are comparing them to typical-hearing sighted children in the normative group of that assessment. It's very important to have a collaborative approach to selecting the correct assessment tools for students who are Deafblind. And when we're thinking about this, we need to make sure that when we're evaluating students who are Deafblind, that not only is the instrument selected carefully, but that the data that's gathered from that instrument is interpreted appropriately. It's always great to go back to the assessment manual to look at who is in the normative group, who are we comparing this child to. So for some children, it may be possible to administer an assessment like the Kaufman assessment battery for children using the non-verbal index, but giving the allowable accommodation of not scoring the assessment using time points. For other children who might not be able to meaningfully participate in a one-on-one assessment, you could fall back on a checklist-style measure. However, each item that is accounted for, given credit or not given credit for, the evaluators really need to consider is it a skill that the child can't do or is it a skill that the child has not acquired because they do not have access to. A lot of the checklist-style cognitive evaluations are very language heavy. A common one that's used, the developmental profile 4, if you have any run of the mill child with a language delay due to a hearing loss, their score is going to come out very, very low because the test is looking at language skills and calling those cognitive skills. So while it's important to make sure that the test is administered correctly, it's also important to make sure that that data is looked at in light of the child's access. You don't always have to provide a score if you don't think that it's appropriate to compare the child that you're evaluating to the normative group. You can still give a really rich narrative about what that child was able to do and then looking at those skills to make recommendations for, you know, the next skill in the hierarchy that the child should work on acquiring. 

>>Rachel: Elyana Jones asked a question. Is there federal guidance on this and is that resource on the handout that was provided? 

>>Brenna: So the handout that was provided has Texas information integrated with federal information. And I want to say most of it is Texas information. Yes, so Kate is correct. Anything that starts with that 300 CFR, those are going to be the federal guidelines. Anything that has got TEK or TAC or 29 in it, those are more Texas specific. 

>>Rachel: Awesome. Thank you. Okay. The next question is for Edgenie. What are you hearing from families regarding intellectual evaluations in relation to their children? 

>>Edgenie: I would also, as we have this conversation, I would encourage everybody to weigh in on the chat. I want to point out that we had some really great links up here to the National Center for DeafBlindness as well as the National Deaf Center. And another resource, ECAP. Thank you for pulling that together. What I've been hearing through the years from families is, first of all, I would say most families would describe this as a high-stakes decision. Very weighty. We're really requiring them to be on their A game when it comes to being well informed. And, you know, being part of the process, advocating being interviewed and contributing all the ways they can. Many families express that they have concerns with the evaluation results being accurate because their child has been identified with vision and hearing. Sometimes families express a lot of regret because maybe the vision or hearing or maybe even both were not identified as, you know, a disability. And prior to that maybe evaluations have already been done that have resulted in diagnoses being made for their child. So sometimes those are the closed-door conversation of dealing with the regret and the disappointment of realizing that vision and hearing ended up being a significant issue that was -- or disability that was not considered prior to evaluations being done. I think, too, families will often wonder how do we take into account things like, you know, the young person's early childhood experiences, especially if the child's had a lot of medical issues going on. Many of our children have multiple surgeries. They spend the early part of their life really struggling to live, to be really candid. And we know that that has an impact. But families want to be assured that that's being considered during the evaluation. And then, as Brenna pointed out, I think families often say we're just beginning to get a handle on how our child communicates and what access really means. So if we're just now getting a handle on this all together collectively, not just the family but the medical team, the educational team, how do we go about doing this evaluation in a way that, again, gives us an accurate reflection. 

>>Rachel: Absolutely. Kate just mentioned -- and for those kids that we know who have or suspect have sensory impact, get those evaluations done early because the rest of the team needs that information for their EVALS. 

>>Edgenie: Let meting an to that too. I think this is where the conversation -- this needs to be a team effort because the family may have been given medical information that it hasn't dawned on them that this is an important piece of information that needs to come to the team. I just saw a video -- I'm trying to think where it was. It was brilliant. It was with a parent talking about her child's diagnosis. And she gives it in the medical terms. And then pause and says did you catch that? Did you hear the clues here, the red flags that were vision and hearing? You know, put together and, no, most people wouldn't. A diagnostician would but most educators would -- it's the matter of being able to collect this from the medical community and bring it to the team in a way that can be considered part of the evaluation. 

>>Rachel: Okay. And how do school assessments, including cognitive evaluations, impact eligibility for state and federal programs such as Medicaid waiver programs and adult services? 

>>Edgenie: That is -- the short answer is just like we do in education. These evaluations are important to bring to other providers, especially when evaluation for eligibility is being determined. As far as I know, I have searched high and low for, you know, documented guidance on this. I think, though, what I understand from families is these providers can consider school evaluations as part of their eligibility requirement that it's up to them to determine, you know, whether they can be used for eligibility or not. And I think there's a lot of variance in that. Talking with families. They can get different information from different providers of what is necessary. So, again, the onus is on the families to be really informed of what the eligibility is for each of these programs they're requiring. And it's talking to the providers of what are you looking for so that I can have a clearer understanding of what we need to help you, you know, have in order to determine eligibility. 

>>Rachel: And do you find that there is some pressure for parents to get certain diagnoses to be eligible? And can you speak to that? 

>>Edgenie: I can and I think this might be a great opportunity for others to weigh in. Early on is high stakes and that was one of my code words for -- yes, tremendous pressure. Especially for families who have younger children. Because sometimes it's presented to them as you have to get this label, this diagnosis in order to be set up for adult services or for lifelong services and you've got to do it now. You've got to. We do know that to be diagnosed with an intellectual developmental disability, that has to happen before age 18. You know, that is part of it. But, yeah. To be told, you know, you've got to do this, it's going to open the door for all of these services. Your beloved child's going to need for the rest of their life. 

>>Rachel: So I can speak from experience. I have a child who has Down syndrome. My youngest daughter has Down syndrome and when we were going through the process of getting eligibilities and things like that, we were specifically told that right now maybe that ID label doesn't need to be there because you're on a 15-year wait list. But as soon as that name comes up on those Medicaid waiver lists, if that ID label is not there they are not eligible for services. And here we are, my daughter is 19. And to go back and look at the documentation and then the rules that there's nowhere in the federal guidelines that states that. But I was very specifically told if she did not have that ID label then she would not be getting services. So, ultimately, towards the end I was like what is the most important thing here? The most important thing is for her to get services. But all throughout her educational career, like I fought tooth and nail to make sure that she was included in all the things that she needed to be and that the approach and her program was appropriate for her. And I fought and fought. But here I am. I'm a professional. I'm a teacher and I know the rules. And so whenever there was any time when they would say we're going to do this. I would be like, actually no. We're not going to do that. This is what we're going to do and we're going to keep her included, because that's what is appropriate for her. And so it's that diligence that you just talked about. Like you have to stay on top of it. It's hypervigilance, right? Here we are, all these years, and we were told incorrectly and it was really hard to fight that because you get scared. And I don't know if there are any parents listening in today. And you've had to navigate that process or Medicaid or SSI. It is a straight-up nightmare. Absolute nightmare. And it's really, really hard. And I just fear for the families that don't know that they can say no and they can push back and they can say, no, that's actually not how this works. That's not how this goes. 

>>Brenna: Thank you for sharing your personal experience. I just wanted to add that your daughter is so lucky that you knew what the rules are and it's so important that we educate and empower our parents on the Texas Medicaid waiver list for the class waiver, the HCS waiver. It talks about how the child has to have an intellectual disability or related condition. And it will take you to a link where you can actually see the diagnostic codes of all the related conditions that are accepted. And it shows that a child who does have that medical diagnosis of Down syndrome could qualify just based on that diagnosis alone. 

>>Rachel: Yeah. And here we are so many years later and I had, you know, fortunately we had a lot of really great educators too who fought in her defense. And I am so, so, so thankful. And also having friends to be like, Rachel, that doesn't sound right to toss ideas back and forth. And I know that's not always the case. And it's such a hard, like, thing to navigate. Even as a professional, it's so hard. 

>>Edgenie: And this is Edgenie. I would add in, I think one of the things that makes this so complex and hard is these conversations often are happening around the IEP table about services that are outside of education. And, you know, there's a reason people make it their livelihood to keep up with these state and federal programs. They're very complex. There's a lot of laws, rules, and regulations. And, you know, and subtleties and figuring out services. So no wonder sometimes information gets brought into, you know, an educational conversation that may be a little bit inaccurate or a whole lot inaccurate. Because we're dealing with mega systems that are hard to understand. 

>>Rachel: Yes. 

>>Edgenie: And there's some great comments in the chat. 

>>Rachel: Really great comments. Rob Harris, same. The parent advocate, have a child 17. They're in panic mode, told this makes sense. Thought it was just them. You are not alone. This is so, so hard. And Kayla Williams said my daughter received her diagnosis of severe intellectual disability from a psychologist at the same time as her autism diagnosis. But there wasn't any actual cognitive testing done. Should I be worried that diagnosis may not be recognized as valid if no testing was done? 

>>Brenna: I would be very interested to look at that evaluation. If you're in the State of Texas, there should be a disability report so eligibility for ID includes a cognitive measure that shows a standard score of about 70 or lower. We have to take into consideration things like the standard error of measure, so it could potentially be a 71 or 72 and still count. And then also looking at those areas of adaptive behavior to find at least two areas that have significant deficits in them. So there are different kinds of testing that could have been done. I'm curious if potentially you were offered 50 different pages of checklists and packets to fill out and one of them that you filled out was potentially what was used as your child's cognitive evaluation without the psychologist/psychiatrist -- psychologist sitting down and actually engaging your child in a traditional test one-on-one. 

>>Rachel: And Julie just said it's so important that members of the educational team are sharing this information with families. Yes! And supporting them as they navigate these systems so that services and resources are provided equitably and not only to the individuals with families who have the information, skills, and time to navigate these service systems. 1,000%, Julie. And I, as like a person who is going through this, always shared all of this information with all the families that I served because I was like you have to get on this now. And I was on them. And I'm telling you from experience that this is a really hard, you know, road to navigate. And I am here to help you do this. I was like, but from experience this is so hard and we have to do this together. And to try and offer all of that support that I can, like while I have their student on my caseload. So I try. I would try so, so, so hard to make sure that they knew. 

>>Kate: So I'm only popping on because I was invited to. I don't want the audience to think that I'm just, like, my turn to talk! I have an unmute power. Although I would anyway. But I just wanted to pop on and add that administrator perspective on this issue too. First of all, I want to say that we recognize in sharing information, one, that this is from Texas and that we all have our individual experiences. But even within the State of Texas it is not uncommon for two families to have very different experiences. They may have children even with the same diagnoses and have very different experiences navigating this system. We recognize that and everything we're sharing, please make sure that whatever state you're in, and even if you're in Texas, that you are in contact with those professionals that are part of these agencies, whether it's a Health and Human Services-type agency in your state, whatever it might be. But you and the family are in contact with them often. The other thing I want to say too is this goes to show how important this transition planning is. So often we as the IEP special education professionals look at it as a box to check. We're just checking the box, yep, we wrote a transition plan. But did we really? Does that family, like Julie said, really understand what it means to navigate this and the part that this cognitive assessment plays in that. And are we taking the time in those IEP meetings to really make sure that the family understands? I don't understand Texas' systems but I know who I can send the family to to talk to. It's not your job to understand all the intricacies but it is your job to make sure families know where and how to find that information. So I just wanted to, again, invited, pop on and say that. 

>>Rachel: Thank you. Okay, Brenna, I want to ask you. I'm going to go back to you. How does cognitive evaluation affect a child's ability to participate in alternate state assessments? 

>>Brenna: So here in Texas we have the STAAR alt 2 and they revamped the participation requirements this year but throughout the multiple pages of questions that you have to consider for a child, at no point in time does it ask for an IQ score or does it ask that the child is labeled with an intellectual disability the participation requirements that are considered for participating in this alternate assessment, they're looking at the child's adaptive behaviors. They're looking at the level of support a child requires and they're looking at which areas the child requires a high level of support in. So there is no requirement on the Texas star alt participation that a child have an IQ that is 70 or below. So an FIE does not contain a specific IQ number for a child because the evaluation team didn't think that it was an appropriate reflection. That will not impede the child's ability to participate in alternate state assessments. 

>>Rachel: [Off mic] Okay. This is a blend of Brenna and Kaycee. What cognitive evaluations that are currently being used are normed for students who are Deafblind? 

>>Brenna: None. There aren't. So there are tests that have children who are deaf and hard of hearing in the normative group. There are tests that have children who are blind or visually impaired in the normative group. But there are no formal cognitive evaluations that will produce a standard score that are compared to a normative group of children that contain Deafblind children in that normative group. 

>>Rachel: Okay. Okay. I'm going to -- I want to read a comment, yeah, I want to read a comment that just came through so that way we can address it. A participant said I got stuck with informed consent. I could not really consent because we are at the edge of science. Parents could use support in that area. I am asked often, what do we default to when we are on the edge of science. Asking anonymous. What do we default to? 

>>Brenna: I am so sorry. Can we break down the question for me? 

>>Rachel: Okay. It was just -- it was a -- it was a question that got asked, or a comment. With informed consent. Did we mention informed consent? 

>>Brenna: What does informed consent mean? I'm not sure I heard that terminology before. 

>>Rachel: Maybe the participant can clarify. Let me go on to the next question and hopefully we can get more clarification on that comment. How can the TSVI, the teacher of students of varied and the TDHH, teacher of deaf and hard of hearing, collaborate to support the diagnostician to completing the evaluation to make sure that valid measures are used? 

>>Brenna: It's so important when we're working with students who have sensory deficits that the teacher of students with visual impairments and the teacher of deaf and hard of hearing do their portion of the evaluation first so they can talk about the student's level of access where they can collaborate with the diagnostician and LSSP to look at different tests available to see if one test might be more suited for the child than the other. Typically, the IQ tests that are administered to gather a global intelligence score, they include measures of crystallized intelligence. This is kind of a measurement of just broadly-acquired knowledge. Looking at those individual G areas is something that can be very helpful but you also have to consider how each G is measured and that can be different test to test. So some IQ tests measure short-term memory using language. Others measure short-term memory using hand movements, depending on what your child's residual vision or hearing is, one might be more appropriate than the other. It's also important to consider each area and how it's being measured. A really good resource I like on the WISC5, there's a report number two regarding testing children who are deaf and hard of hearing. It talks about the appropriateness of administering and interpreting each individual subtest on that entire evaluation. But in light of what the child's communication modality is. So it will tell you that, yes, the subtest, it's appropriate to use with students who utilize oral language or, no, the subtest should not be utilized with children who utilize a total communication approach because it wouldn't be appropriate to interpret that and get a score. However, you could still administer it and talk in a qualitative manner about how the child performed without giving a specific score. Even tests that are called non-verbal, sometimes they have language demands. So the WISC-5, even though it has a non-verbal index, there are actual language demands that have to be considered when you're explaining the subtest to the child. Other tests, like the Wexler non-verbal or the Lighter, it is truly a language list test because when you are showing the child how to do each individual task, you are modeling it, you are showing pictures. You are not using any spoken or signed language to communicate to them what they need to be doing. So it's just important to remember what does the test say it's measuring and then what is it actually measuring for your student, depending on how it's administered. Sometimes they're not always the same. 

>>Kaycee: Yeah. This is Kaycee. I think all of that is so true and we're so lucky to have Brenna as a diagnostician who has a deaf ed background. A lot of times our diagnosticians evaluating our students have never had any experience with individuals who are Deafblind and especially children who are congenitally Deafblind. I think additional roles for the TSVI and TDHH is to explain not only the components of the test, like Brenna was talking about, but also explaining access at world and access to concepts and how concept development works. It could be that that test is referring to an elephant and this child, who is Deafblind, has never touched an elephant and doesn't have a concept of how big an elephant is and the parts of an elephant because it's not something you can really fully understand tactilely. And so sometimes, you know, I think that could be an important role as well as to not only look at direct access to the evaluation tools but also to the material, to the content within that evaluation and talking about what might be appropriate and what might not. Another resource is the tactile working memory scale out of the Nordic Welfare Center. And while it's not a cognitive evaluation, it's an evaluation for working memory through the tactile sense, but there's a lot of cognitive components within that. And it won't give you a standard score. Anything like that. But it can be really helpful to show some of the complex cognitive skills that our congenitally Deafblind students especially are using, that may be overlooked by people who don't have, you know, deep, rich experience in working with individuals who are congenitally Deafblind. And most of the time people performing cognitive evaluations out there on a day-to-day basis don't have a lot of experience evaluating individuals who are congenitally Deafblind. So, you know, if you've got somebody around that's trained in that tool, that can be really helpful to look and reflect on some of the skills that they're using that show significant cognitive ability fully through their tactile sense in their everyday activities. Not setting up novel tasks for them to do or things that are formal in nature. So that's another possibility. 

>>Rachel: So I got a little bit more information. And so what we're trying to look at is, you know, we know there aren't any norm tests for our students who are Deafblind or for diagnoses. If we have to give informed consent when doing -- like proving those evaluation processes. But if the evaluator is not able to explain an evaluation for our students who have rare, you know, diagnoses, what can a parent do to be informed of that evaluation process? Because I think that what the fear is is that those inappropriate evaluations lead to low expectations. And when you're seeing this and they're leading to those low expectations, what can you do to be informed of that? And then kind of counteract those evaluations that aren't normed for our kids. There are none that are normed for our kids. 

>>Brenna: Yes. You are absolutely correct on inappropriate evaluations leading to low expectations and the dangers of evaluators who do not have experience with children with dual sensory loss administering tests that might not be a good fit. It could be a test that's measuring what that child can't do because of their sensory deficits, as opposed to their true cognitive abilities. I am so sorry that you went through this. I think that it's important to ask the evaluation team. So here in Texas, at least, before we do an evaluation, we have the consent for evaluation. And along with it there's another form, the notice of proposal to evaluate. And it has a section for communication and language. And it says we may use tests like -- and then the evaluator is supposed to put in names of the test that may be on that child's FIE. So as a parent, I would suggest that when you sign that consent for evaluation, that you are also provided that notice of proposal to evaluate. There should be a section that says intellectual or cognitive. It should have the names of specific tests in it. And you could schedule a meeting with the evaluation team or whoever will be doing that portion of the evaluation to make sure that they're using it appropriately. It's important to know that a lot of these tests, they may have, you know, 20 different subtests and you don't have to give all of them. You can pick and choose which ones you want to give and it might be better tailored or suited to a specific child to administer some of them but not all of them. So I would suggest as a parent looking at that notice of proposal to evaluate. Looking at the names of the tests that they are saying they're going to utilize with the child. And then doing some research on them yourself before sitting down and meeting with the evaluation team regarding the specific tests. 

>>Rachel: There's a question that came in. And there seems to be a trend to assign intellectual disability to adaptive scores. And how do we accurately assess students who are Deafblind with additional physical disabilities. Kaycee, this is where you spoke to, that tactile working memory scale. This would be an appropriate evaluation to use because they're using these things and if the student isn't -- they have a physical disability, does not really reflect, you know, there are other ways to show cognition and memory than just like what is physically performed. Would you agree with that? 

>>Kaycee: I do, yes. I definitely agree with that. Something I want to point out, for those that are not familiar with the Nordic welfare center's work and tactile working memory scale. A lot of times people think tactile and think fingers, fingertips, hand. Tactile is working full body, head to toe, every square inch of that child's body. If the child has limited mobility of their hands or of their feet or of the left side of their body or whatever it may be, it's not going to impact those results and it's not a standard score, like I said. We're really looking holistically at this child, what they're able to do and looking through that whole tactile bodily perspective. So that can be really helpful for those students who may have additional physical things going on as well. 

>>Rachel: There is a question, and we'll have to keep going because we only have 15 minutes left. This is a huge topic. I didn't realize it was going to be so huge. What would you say to criticism of using Deafblind-specific tools that have been created in other countries? Have you noticed that there is criticism to this and how do you counteract those criticisms? 

>>Kaycee: This is Kaycee. So we have been learning from the Nordic countries and Deafblind since the beginning of Deafblind education. Dr. Van Dijk started this all, really, and has led us for many years before his passing from over there. And honestly they're decades ahead of the United States in everything Deafblind, in my opinion, and always have been. And we are constantly learning from them and doing our best to replicate the amazing work that they have done in the Nordic countries. And really dedicate a lot of our time as consultants to learning from their work and reading their work and figuring out how that applies to Texas and the United States. So I think showing them our history, the history of Deafblind education, the history of haptics, the history of all of it, child-guided instruction, child-guided assessment, all of that came from the Nordic countries and, you know, utilizing these tools. Everything the Nordic countries have put out, honestly, are the best works that we have in the field, in my personal opinion. And I would defend it all day every day. And we're here for you if you need somebody to help you defend it. 

>>Rachel: Please remember -- participants, please remember if you would like to ask questions that all the participants can benefit from, please make sure that you set your "to" to "everyone" so everybody gets it. We only have three more questions left so I really want to go through. And there's so much traffic on our chat so we will try to address these as much as possible. Kaycee, I'm going to -- actually, Brenna, I'm going to go back to you. How do you differentiate between a cognitive deficit and symptoms of language deprivation? 

>>Brenna: So, again, that goes back to looking at the test, what is the test purported to measure and how is it being measured. If you administer a test that has verbal demands to it, whether they're spoken or signed. But any kind of language demand and the child does not understand what you are asking them to do, because they didn't understand the directions, that's very problematic. So you're going to want to make sure that you were using tests where you were explaining to the child, showing them what you want them to do, that it can be done through modeling, through showing pictures, through repeated practices with that child and that when the child is expected to produce an answer that the answer they're expected to produce is not communicated through words or signs but is communicated through physically manipulating different test items. 

>>Rachel: Great. Kaycee, do you, as a consultant in the field, see evidence of misidentification and what limitations have you noticed are placed on children due to this misidentification? 

>>Kaycee: Yes. Unfortunately, we see this quite often where children who are Deafblind have diagnoses of intellectual disability or Autism Spectrum Disorder. It's really unclear if those things are really separate from the child being congenitally Deafblind. We have a lot of children who are Deafblind. We had a great Coffee Hour that Julie did very recently for us that talked about the similarities between individuals who are Deafblind and individuals who have Autism Spectrum Disorder and how it can be really hard to parse out what's from the sensory, the hearing and vision sensory impairments and what is from Autism Spectrum Disorder. So there's that. If you need that resource, Julie's Coffee Hour, her and Maurice Belote wrote a fabulous article. We see that all the time. And we see often, often, often kids who are Deafblind who have that intellectual disability component and even who have ID listed first as their most impactful disability when they're congenitally Deafblind. And really the question we try to bring to those teams when we come in as consultants is how do you know, how do you know that that child has an intellectual disability when we can't really measure what's going in. We can't measure what's coming out if we don't know what's going in. If we don't know what they truly have access to. When we know both distal senses are impacted, in some way. Of course it's a massive spectrum, right? Our students who are Deafblind, some have a lot of hearing and not a lot of vision and everything in between. But we really don't have a way to know. Back to that concept development piece I was talking about earlier. We don't know how much they have absorbed. We really can't measure what they can do on these tests and what they're able to perform. So students having significant language delays or significant -- like adaptive behavior deficits. Does not necessarily correlate to deficient cognition. It can absolutely be an access issue. A lifelong access issue. And so I think it's really, really difficult to know if any child who is congenitally Deafblind also has an intellectual disability. And then the limitations part of that question is really difficult. I mean, we often see children who are not taught the same curriculum or taught the same level -- at the same level of rigor as their peers. We're often seeing children who don't have the same access to language-rich environments as their peers. And that's really unfortunate. I don't think it's ever on purpose. I think it's just a lack of awareness and is, you know, really speaks to the level of advocacy that we all need to do for these kids, for these families. Talking about that this is an access issue through and through and that the only way that they're going to make the progress we want them to make is to assume that they can make that progress and provide everything we can to help fill in those gaps. Assuming that they have intellectual disabilities, assuming that they have, you know, other things going on is not the answer. Brenna, I'd love to throw it to you if you want to add about Dr. Marina McCormick's article you brought to our attention. 

>>Brenna: Yes. Dr. McCormick recently wrote an article on the success for children with hearing loss website. I'm hoping someone can throw the link in the chat. Awesome. Thank you, Edgenie. She specifically talks about not placing limitations on children who are Deafblind and the importance of building those communication skills consistently, early on. And that when we have a child in light of conclusive evidence, we need to always make the decision that is the least dangerous assumption. When we have a child who is Deafblind and we are unclear on what their cognitive abilities are, it would be dangerous to limit what you are exposing that child to because they may very well be able to learn it. So when we have these kids and we don't have conclusive evidence one way or another, we just want to think about how could this decision impact the child in the future and based on the options that we have, which of these options will be the least dangerous to impact this child's future to be an independent member of society. 

>>Rachel: Okay, you guys. We only have about ten minutes left. Less than that. So there's one more question. What are the risks -- this is for Edgenie. What are the risks to misidentification in the home setting? 

>>Edgenie: I think we've heard many of them today. Brenna, you just touched on some really significant ones, including this, you know, least dangerous assumption, how important that is. Because families use that to build their hopes, their dreams, their plans for the future. And we also just have to recognize there are a lot of cultures out there that really look to educators as the experts and are taught to not question what they're being told, whether it's educators or medical providers. So they may take that information without, you know, just without feeling like they can be a part of the conversation and contribute to that. That can be so detrimental in so many ways. The other thing I would say is it's going to be opportunities missed. And also consider the impact it has on family life, especially as parents oftentimes just know it in their gut that something's not matching up, that can really cause a variety of emotions that are hard to come to terms with. That can interfere with relationships with their partners, the medical people, the educators, whoever it might be. Just something's not settled here and I don't feel like I'm getting anywhere trying to communicate that. And, of course, all of this advocacy, all of this time to research and everything, that's draining important time the family could be spending together doing what only families can do. Family life is essential for, you know, having a robust and meaningful life. And, with that, I know because we're running out of time. There's so many wonderful examples out there of what this really means. Rachel, with your lived experience, do you have anything you'd like to add? 

>>Rachel: Just quickly, because I do want to bring up another question that just got asked. But when my daughter was getting diagnosed with Down syndrome, the geneticist that met with us, after having -- she was newborn. After having looked at her file for 30 minutes said she's never going to reach the capacity of a 10-year-old. And immediately I was like, she don't know what she's talking about. And completely shut her out. But my husband was lived. He was about to crawl over the table and just strangle her. And I was like, what is going on? I was like, she doesn't know what she's talking about. Totally fine. It's all good. And he was like, Rachel, you have had decades, decades of schooling and you know this to be true. But what about those parents who don't know that and who believe this and who act as such. What then? What happens to those kids? He's like, I'm so angry. He was like because they're just going to believe and live as if that's actually true, and it's not. It may be, but it's not. And that actually leads into this question that was asked, like what do we do for older Deafblind students when they have not had the access to instruction and how do you mitigate opportunities missed? Like, what do you do about that? 

>>Brenna: You look at that child and you look at the family and you look at the amount of time that that kid has in the education system and look at the skills that will be most functional and meaningful for that child's future life in the post secondary setting and you make the best of it. It will require hard conversations with peers in the education world. There's likely a back story as to why that child was not given the opportunity. And then encouraging the team of people who is now working with that child and giving them the opportunity, showing them that this child can learn. This child can make progress. Sometimes people who don't have experience working with Deafblind children want to measure progress using a yardstick but with some of our kids we measure progress in centimeters. That's okay because progress is progress and it is unfortunate that there are children out there in the situation. But I think we need to celebrate when we find them, celebrate the opportunities that we do have with them to work with them and their families and really focus on the skills that will impact that child positively outside of the school setting. 

>>Rachel: Absolutely. That really does lead to another comment. What do you do? How do you encourage a parent? That's what you do. You empower them. You empower that parent. Like there is a reason. And this child, your child can make progress but we've got to bring them into school. Let's bring them in.