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Final Transcript

Customer:American Foundation for the Blind

Call Title:AFB CVI Call

Host:Mark Richert

Date:March 14, 2018

Time/Time Zone:7:30 pm CentralTime

SPEAKERS

Mark Richert

Dr. Christine Roman-Lantzy

Dorinda Rife

Alicia Waugh

Diane Sheline

Brenda Biernat

Rebecca Davis

Rona Pogrund

Dr. Sandra Lewis

Amanda Lueck

Sarah Malaier

PRESENTATION

Operator: Welcome to the AFB CVI Call. My name is Leslie, and I’ll be your operator for today. At this time, all participants are in a listen-only mode. Later, we will conduct a question and answer session. [Operator instructions]. Please note that this conference is being recorded.

I’ll now turn the call over to Mr. Mark Richert. Mr. Richert, you may begin.

Mark Richert: Thank you so much, Leslie, and thank you everyone for joining us this evening. This is going to be a really exciting call, and we at AFB have been thrilled to see the kind of interest being expressed all across the country and frankly, around the world. We’re going to have a number of folks from all around the globe, apparently, joining us for this conversation. So thank you so much for the interest.

I also want to make sure that folks know that, as I think Leslie indicated, this call is being recorded, so I expect that what we’ll probably be doing at AFB is posting, sooner as opposed to later, a link for this session this evening. Be watching for a notice about that, and please do consider sharing this conversation, the recording of it, with your networks, and for people who might not necessarily have been able to join right now, but who might have been interested.

I will just mention a word or two about what we’re going to do, and offer a word or two of introduction, and then we’re going to get to it. Tonight, we have an amazing panel of folks, of parents, program administrators, university faculty,frankly, experts and the leading thinkers in this field really, in so many ways. This group of folks is going to share their candid points of view with each other and with all of us about what they all see as sort of the principal challenges facing the delivery of quality Special Education to students with cortical or cerebral visual impairment. I’m really looking forward to hearing what they have to say.

I think we said in the announcement for this call that we invite you to a spirited conversation about these issues. I fully expect that it will be spirited, but I think what that reflects, frankly, is the passion that all of the folks have in this field from whichever sector they come from, a passion for making sure that kids who are blind or visually impaired have the kind of education that’s worthy of their tremendous potential.

Just by way of how we’re going to do it, we’re going to have that panel discussion first. Then for roughly the second half of our conversation today, we’ll be taking your comments and questions, and Leslie will coach us through how to do that, when the time comes.

Just a word of introduction then from me, and then we shall get started. I think I introduced myself in the beginning. I’m Mark Richert. I’m the Director of Public Policy with the American Foundation for the Blind. I also just want to share with you a couple of candid personal thoughts. I have been blind all my life, which is about 49 years now, if you are curious. But I can remember as a, some would say, precocious, others would say mouthy, blind kid going to my own IEP meetings and insisting on having things my way. I can remember going to those IEP meetings with a mom who was an absolute fierce warrior, who would go into those meetings defending her kid to the hilt, and then coming out of those meetings and sitting in the car and crying.

So, when I tell you that I have a personal experience with blindness and vision impairment, and I have a personal experience going through and growing up through the Special Education system, I most assuredly do. I hope that that’s useful in the work that I do now with the American Foundation for the Blind, in helping to try to push forward our public policy agenda. The principal thing we’re trying to do at AFB of course, is to push something called the Cogswell-Macy bill. The Cogswell-Macy Act is not per se, the subject of tonight’s call, but I would urge you, if you don’t know what I’m talking about, to take a look at our website, afb.org/cogswellmacyact. Hopefully, that’ll give you a good jumping off point for learning more about what we’re trying to do there.

Fundamentally, what the bill is about, though, is to try to improve Special Education for all kids who experience vision loss, whatever the condition or issue happens to be. Look, no piece of legislation answers all problems. What we’ve tried to do in the Cogswell-Macy bill is sort of flag the principal things that we’re all concerned about. I will just conclude my own sort of personal thoughts here by sharing one brief story that is of some years ago.

I was going through my closets. I’m a pack rat, I’m a bachelor, I live by myself, and I was trying to clean up some of my closets, believe it or not. I came across a box of old cassette tapes. Hopefully some of you remember what cassette tapes are. I was really curious to hear what was on some of these tapes, so I started popping through some of these cassettes and listening to them. I came across one recording, and it was a recording of a very young sounding version of my mom. And, she was reading what sounded like a social studies text. So I’m listening to it, and wow, she sounded so young. Then, I hear in the background on the tape, I hear this chiming of a grandfather clock that we had in our house. I could tell from the way that the chiming was taking place that this was two o’clock in the morning. Here’s my mom reading at two o’clock in the morning.

Well, I can tell you that this crusty inside the Beltway, sometimes irascible lobbyist for AFB, was really touched by that. I just want to say to parents on the phone, God bless your work. God bless you for the work that you’re doing with your kids. Keep up the fight. Remember that you’re not alone in this, and certainly the folks who are a part of this panel tonight are people who want to work with you.

With that, let’s get to our conversation.

Okay, what I said to the panelists is that I would pitch a very nice softball question to basically each of them and have them respond. They can frankly take the time if they want to, and answer whatever they care to talk about. But with that, I want to invite Brenda Biernat to take the first question. When you do, Brenda, why don’t you also introduce yourself? I know you’re a parent of a CVI kiddo, and that you’re the founder of startseeingcvi.com, but let’s also hear a little bit about you.

My question to you is, what do you see as the principal challenge facing the ability of being able to provide quality Special Ed to kids with CVI?

Brenda Biernat: Thanks, Mark. At first I wanted to say, I wanted to thank you, American Foundation for the Blind, and Rebecca Sheffield for being open to my request to hold this call, and begin this long overdue conversation about improving services for our kids with CVI, the leading cause of visual impairment of kids in this country. So I hope this will be the beginning. Also, I wanted to say to all the parents that are on the call tonight, I hope you have your phone in one hand and a glass of wine in the other hand.

So about me, I am a parent of a child with CVI. My son was diagnosed pretty much as a newborn, as a one-week-old newborn, so I’ve been doing this for a while. When he was going into pre-school, it’s when I started my vlog, Start Seeing CVI, and there’s an accompanying Facebook page, just really in response to the overwhelming need for awareness, advocacy, and education on behalf of kids with CVI. So, I hope that’s enough of an intro.

Let’s see, so to the question, my son was diagnosed as a newborn. He recently turned seven, so I am going into my eighth year of doing this, being a parent to a child with CVI and to advocating for a child with CVI. That means across the board. I think first and foremost, there’s a huge need for awareness and advocacy across the board. Tonight’s call is focused on education, but really it needs to be so broad, really from the point of diagnosis, trying to find somebody who will diagnose your child with CVI. That means finding an ophthalmologist who knows about CVI, to going through the early intervention services with your child, through pre-school, and all the way through the public school system.

My son just turned seven, as I said. I’ve been doing this for a while, and not a lot has changed. What I’ve learned is that my difficulty and all of the obstacles that I run into are not just my story, they’re all the parents’. Every CVI parent, every CVI mom, this family I know across the country, I know people all over, it’s the same story. It’s, I can’t get a diagnosis, I cannot find providers who know CVI, who have even heard of it, and I cannot find a teacher of the visual impaired who knows enough about CVI to serve my child.

I think the biggest thing, because it’s probably going to take a while to change, is really teaching CVI. When I say that, I am talking about the university preparation programs. Teaching CVI, it is either not taught or it’s taught very little in all of the programs across the country. There is one school in the country that has a dedicated class to cortical visual impairment that they have offered for several years. Last year, it was made mandatory. That is at the University of Massachusetts, Boston. Teachers need to start learning about CVI. My son’s diagnosis wasn’t an option. His stroke wasn’t an open. His diagnosis with CVI wasn’t an option. Training in CVI should not be optional. It should not be continuing education. You can choose to do this.

Our kids make up, at least half of case loads of teachers of the visually impaired. I hear that over and over and over, and they are not learning enough about CVI. I think for many of us parents, we have our sort of benchmark for change really or for the lack of change. For example, we use the publication in 2007 of Christine Roman-Lantzy’sCortical Visual Impairment and Approach to Assessment and Intervention. That book came out four years before my son was born. You think, why did nothing change in that time? Why isn’t there more knowledge? Why don’t people know about this? That is the educational approach for my child, for kids with CVI. I hear this over and over, too, from parents.

People need to start learning about it. It makes a world of difference to my son. I literally don’t know where he would be. The struggle continues. It really doesn’t get any easier. If my son had an ocular impairment, it would be completely different, but a lot of the supports out there are really not for kids with CVI. We need to do that.

Mark Richert: I think that’s a good start, Brenda. I think that’s a really good start. Let me invite your fellow CVI moms to join in with you. We’ve got at least two others on the call, Alicia and Rebecca. Alicia, I’m going to start with you, but Rebecca Davis, get queued up, Madam. I look forward to hearing what you have to say, but Alicia Waugh is a certified orientation mobility specialist, a physical therapist, and perhaps most of importantly, a CVI parent.

Alicia, I guess I’d ask you the same question I asked Brenda which is, what do you see as the major barriers facing quality special effort kids with CVI?

Alicia Waugh: Hi, everybody. Yes, I agree with Brenda. There is an inadequate level of education on the part of vision teacher training programs. So our teachers of visually impaired are not comprehensively learning about CVI. Like she said, they may mention CVI in passing within standard coursework, but there aren’t dedicated courses to CVI. That is extremely concerning, because ocular principles really don’t apply to kids with CVI.

There are very few touch points between functional vision assessments for students with ocular versus students with cortical visual impairment. So if our teachers of visually impaired are charged with being the one person on the team to educate the rest of the team members on how to accommodate for our kids with CVI, and they’re learning basically about ocular visual impairments and very little about cortical visual impairments, which is addressed differently, then we’re really in trouble. That is a big issue.

Another issue is there is frequently a lack of administrative support in schools to increase CVI knowledge among their staff and vision providers. There’s a lot of passing the buck. It’s not my responsibility. That’s not my job. I also believe there’s an underestimation of what students with CVI should do or capable of doing. Because some people have these lower expectations, they don’t take the time to learn how to unlock these kids’ potential for learning.

I think it’s a combination of factors. Myself, along with other parents and providers, have done the CVI Range to give an accurate assessment of child’s functional vision, and it provides guidelines to direct further interventions and accommodations. Many times, providers come out of vision programs, and they don’t even know how to administer or score it. That really is just the starting point.

For example, my son, he’s ten now. He is in Phase III, and he can read fluently, but the CVI still has a huge impact on his abilities. He has difficulty learning material, recalling old information, making visual memories, socially interacting with others, and it’s because of the CVI. If providers can’t address CVI in the early phases, in Phase I and II, how are they going to address a student in Phase III? It’s really been a challenge.

It’s hard, because a lot of times, providers want to mislabel the child, instead of really saying, we’re not appropriately accommodating, and maybe this behavior, this inattention or this disinterest is because I’m not getting accommodations for the child to access their environment. Instead it’s easier to just blame it on something else. But really, providers need to take the responsibility to learn CVI and to learn how to address it.

So, I agree with Brenda, especially about starting with the teachers of visually impaired. They need to be learning more about it and more comprehensively about how to address it.

Mark Richert: Thank you so much. All right, Rebecca Davis, over to you. Introduce yourself, Madam. I know you’re a CVI mom and of course, you’ve got your own amazingly titled blog, Momifesto. Good for you. I’m jealous of your creativity in naming your blog there. Take it away. What’s your sense of what the biggest challenges are?

Rebecca Davis:Well again, thank you, Mark, and thank you AFB for having us and hi, Sarah and Rebecca. Mark, your check is in the mail for saying something nice about the blog. The two ladies who just spoke, it’s a pleasure for us as moms to be able to talk to folks like Dr. Lueck, Sandra Lewis, Dr. Roman-Lantzy, Ms. Pogrund, and Ms. Rife. We don’t get a chance to do this very often, so it’s a great opportunity for us, and for you to get a sense of the people who go home with these children and live with them 24/7.

I guess I’m the old guard in this conversation because my daughter is 11 now. We’ve lived in no less than five different states since she was born, and I have had the opportunity to see how early prevention works in several states, and then to try to get her [indiscernible] in no less than four states in the United States. So I’ve sat in many an IEP, where I bring up cortical visual impairment as a barrier to my daughter’s access to her environment. It’s only when I force the issue that someone might throw a light box at me.

The TVIs come in on a consultative basis, which means she might get 45 minutes a week, where somebody will come in and do something with her as though her lack of vision doesn’t affect her all day long like it affects typically sighted people and folks with no vision. Whether you have it or not, the presence of your vision or absence of affects how you’re going to learn.

I would just agree with the two ladies who just spoke. Alicia has bent over backwards. She became an orientation and mobility specialist. She schooled herself, so that she could bring the knowledge of CVI to Ohio. Brenda started a website, because she is a ferocious mother who loves her son and could not accept the fact that there was just vast ignorance whenever she went into school, and that she was the one who knew the most about CVI at the table and still is. She is teaching her son to advocate, and she’s learning as fast as she can.