Final Transcript

Customer: American Foundation for the BlindCall Title: AFB CVI CallHost: Mark RichertDate: March 14, 2018Time/Time Zone: 7:30 pm Central Time

SPEAKERSMark Richert Dr. Christine Roman-Lantzy Dorinda Rife Alicia Waugh Diane Sheline Brenda Biernat Rebecca DavisRona PogrundDr. Sandra LewisAmanda LueckSarah 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

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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

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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

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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.

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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

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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

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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’s

Cortical 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

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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.

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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.

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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?

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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.

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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.

I’ve been doing this for 11 years. I haven’t been as quick a learner. I have learned

about policy because I helped start early intervention for children with vision loss in

Indiana, because it needed to be done. But as we keep moving from state to state, the

major barrier is finding knowledgeable providers. I would love to be able to walk into a

school and know that the teacher knows more than I do, and I could leave Eliza there,

and she’d be taught by people who understand the fact that her vision doesn’t work the

way theirs does. But it’s not rocket science, that they can learn how to teach her and

that the child can learn.

Ellen Mayvell, a brilliant teacher out of Boston, has great presentation where she often

says that the kids can’t wait. My daughter has been waiting for a decade. I’ve been

looking for the experts, and they’re only a handful of them. It is time to change this.

The presence of CVI is not an indicator of cognitive ability. I had to find that hope in

myself and to find these people like Ellen Mayvell and Dr. Roman-Lantzy, who believed

that she can learn, and I have to force people to learn how to teach her.

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I don’t want any other mother to have to go through this experience, so that’s what I’m

going to say at this point. I’ll let everybody else talk. Thank you for listening.

Mark Richert: Very good. Thank you so much, and let me just do a moment of

housekeeping to indicate that since we are providing carte [ph] services this evening

and such, if those of you who are panelists, unless of course you are talking, if you

would just mute your own lines, rather than having the operator do it. Maybe that’s the

easiest thing to do. So if you’ve got a mute button on your phone, that would be

awesome. You will know that it’s your time to talk, because I will make sure to call you

out.

Speaking of calling out, I think what I’m going to do now is queue up the next couple of

folks. I’m going to ask Dr. Christine Roman to present in just a moment, but first I want

to start Diane Sheline with you. Diane, introduce yourself. You’re a consultant in TVI

and a certified low vision therapist, if I’m reading my notes correctly. You’ve got your

own [audio disruption] practice, but I’d love to hear you talk not only about what you

think the biggest challenge is to providing quality Special Ed to kids, you’re very much

on the front lines of providing this training, but you yourself I believe have particular

expertise in CVI. So be sure to talk about that and your sense of how we can make

things better.

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Diane Sheline: Just as the other panelists have mentioned, Mark, we really appreciate

you bringing everybody together and AFB’s work in gathering everybody this evening. I

also appreciate all the parents that are listening in tonight and the panelists on the line, I

want to thank them all.

My background, I work a great deal in the schools. I work with classroom teachers. I

work with parents. I’m in the home often. There are probably parents on the line

tonight listening. I’ve been in their homes. I work with PTs, OTs, and speech

therapists. We try to figure out how we can get kids using their vision, and what

modifications, accommodations, and strategies to use throughout their day. I think that

is actually one of the biggest challenges that we have is getting kids using their vision

and determining appropriate strategies and modifications. Of course all of our kids

need to be appropriately assessed and evaluated, and that’s the starting point.

Let me finish a little bit more about what I do. I work part-time for a large school district.

There are a lot of parents that also come from different parts in Texas and around the

states that I work with their children. I do a lot of teacher training and parent training

around the United States. I wrote a book, and my thing is really strategies. I really work

towards helping to determine the best strategies for each child, to encourage them to

use their vision best.

Maybe I’m a glass-half-full person, but I will say that lately, maybe even in the last year

and half year, I have seen some big changes across the states, and it’s really a positive

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change. I’ve seen more and more people becoming aware, teachers in particular, of

what CVI is. I don’t have to explain it quite as much. People understand what the CVI

Range is, and I do see a change. I don’t think it’s just here in Texas. We’ve been

working very, very hard in Texas with the teachers. I do see some changes, and I’m

really happy to see that.

I know that there’s a great deal more that needs to be done. There’s no denying that,

but I do see some more positive changes. Even at the national level where

conferences, there are so many more conferences. I was just reading through the AER

International Conference in Reno, where it’s just a lineup of fantastic people talking

about CVI. I’ve never seen that before, so there are some changes, and there are

some positive ones across the nation.

I do think that we need to have more training, maybe multi-prong type of teacher

training, not only at the district level within each school district around the states, but at

a regional level and at the state level. I do see some changes going on in an

international level with the conferences and whatnot.

But one thing we’re doing here in Texas, we do something every year called the Texas

CVI Clinic, and we’re reaching out to a region or two regions, and we do an intensive

year-long teacher training in our state. Along with those teachers comes in their

students and the whole team, including PT, OT, and speech, if they can make it into the

training as well, and observe what’s going on.

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I think in that way, what we’re hoping to accomplish is getting those teachers that we

train each year very intensively to then become mentors to other teachers in their

region. I’d really like to see more of that happening across the nation. When teachers

see the change that can happen in children with cortical visual impairment and see what

they’re capable of doing when appropriate assessment is completed and appropriate

modifications are developed, that’s what really makes the difference that I’m seeing.

I’m hopeful that we’re going to see a lot more changes. I also believe that we are more

powerful, and we can create a bigger change when we all work together. So that’s one

reason why I’m really, really pleased that this talk has happened. Thanks again, Mark,

for that.

Mark Richert: Very good. Thank you very much. Christine, I’m going to turn it over to

you. Dr. Christine Roman-Lantzy who frankly needs no introduction, but my notes say

that you’re currently serving as the Pediatric View program head at the Western

Pennsylvania Hospital. Do I have that correctly, or is that old information at this point?

Dr. Christine Roman-Lantzy: No, that’s true.

Mark Richert: Okay. I want to make sure that I’m giving up-to-date information.

Welcome, and I’ll turn it over to you. What do you think is the greatest challenge that is

getting in the way of kids with CVI, getting the quality Special Education they deserve?

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Dr. Christine Roman-Lantzy: Okay. Well, thank you. As everyone has mentioned, it’s

really very much an act of good faith to have this beginning [audio disruption]. It’s very

important. Since you mentioned Pediatric View, I think it’s a good place to start. I have

a project at West Penn Hospital. I’ve actually been there for that project since 1990.

I have seen over a thousand children with CVI, but I have solid data from about 500

children. What’s really interesting on those, when I look at those children with CVI, and

I look at their broad ability levels, the causes that they have of CVI, their family

constellations, all the things that vary, the things they have in common are the

characteristics associated with CVI. That’s the thing that we can really grab hold of.

That’s the thing that we can define. That’s the thing we can assess. That’s the

beginning point for intervention.

I know from my experience that random approaches and generalized thoughts do not

work. We have to have accurate assessment, and we really have to target where that

child’s functional vision is so that we can develop a program accordingly. Interestingly,

among the children that we have data for, and they are from all over the country, and in

fact, all over the world, when I look at the children from the United States, less than half

of them have a teacher of visually impaired. That definition is at any time, in early

intervention, in pre-school, or as a school-age student. That was shocking to me.

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That doesn’t mean however, that they haven’t had somebody in their life to help direct

their CVI needs. In most cases, it’s the parent. So, I find that a lot of parents come to

Pediatric View kind of armed with information that they have taught themselves. There

are parents on this call who have done exactly that. Like Brenda said, or it could’ve

been, I don’t remember who, but said that they’d like to be able to take their child to

school and have somebody know, I think, Rebecca, you said this, more than they do

about their child with CVI.

It is the leading cause of visual impairment in children and yet, the people that have

really stepped forward to address the needs of kids with CVI come from other fields.

They are, first and foremost, people from deafblind programs. The first mentor

programs in the country came from eight states that wrote grants through their deafblind

initiatives. We did long long-term training. In Boston, Tracy Evans-Luiselli did it. I was

involved in trainings with her with developing mentor programs, people that could teach

others about CVI, for about 13 years.

Out of that program came Matt Tietjen, came Ellen Mayvell, came a number of people

who have gone on to show leadership in this area. But why are these individuals having

to do this on their own? Why are teacher training programs not stepping up? Why do

people think that teachers are prepared when they leave their university programs?

They’re not. I taught in Higher Ed for 17 years myself, and I know the competencies did

not include very much at all about CVI.

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There’s a huge, huge gaping hole, and the gaping hole is one in which people are

stepping up to help support students of CVI. They’re often not teachers of visually

impaired. So, I see that as a huge problem. If there’s one thing parents tell me at

Pediatric View, or anywhere I meet them in the world, it is how do I find someone who

knows what you know and can implement this for my child. What I know for sure is that

all children with CVI are smarter or more capable than they can show us, when they’re

in Phase I CVI. So, it’s mandatory. It’s critical that we get at these children’s needs.

I think this is probably my biggest frustration is just this giant—I’ll honor the memory of

Stephen Hawking and refer to the black hole. We have this black hole of knowledge

that we’re dancing all around it, but the kids are there. They’re waiting. So when

people get frustrated with me, or they ask me pointed questions about why do we have

this endorsement, I tell them it’s because the children can’t wait. So we have to identify

the people who have the skill set and who can provide an educational approach for

these children that addresses their needs across their living and learning day.

I’m really happy to have this call. Obviously, I’ve been doing this for a very long time.

I’m pleased to say that we have had data for a long time to show that what we do is

effective. The CVI Range is cited in 2016 articles in Developmental Medicine & Child

Neurology as one of the ways to measure the functional vision of children with cerebral

palsy. There are lots of evidence to show the efficacy of doing this. What we need now

is the commitment. We need a commitment.

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Mark Richert: Very good. Thank you so much. Let me queue up our friends and

colleagues, Dorinda Rife and Rona Pogrund. What I want to do is to shift a little bit now

to those folks who are on our panel, who are managing and running programs, not only

national programs providing products and services to kids who are blind or visually

impaired, but of course then also to folks who are running university programs and

indeed training and preparing the new generations of teachers of students with vision

impairments.

Dorinda, let me I guess, start with you. Dorinda Rife is a certified low-vision therapist

and a certified orientation mobility specialist, and she is the Vice President for

Educational Services and Programs with APH. Obviously, I would love to hear what

you think is among the biggest barriers to kids with CVI getting good quality Special

Education. But of course, no shame at all in plugging what APH is doing, because

among the organizations that are friends to this community, I don’t know of any

organization that’s a better friend to the CVI community than APH. So let’s hear from

you.

Dorinda Rife: Thanks. I do feel like I might be [indiscernible] panel member tonight in

my background and my current role, so I’ll try to whip through that pretty quickly.

Again, my name’s Dorinda. I started with my training in the early 1980s as a teacher of

the visually impaired and orientation mobility specialist, and went on to add low vision to

my training much later. About half of my career was spent as a teacher and then went, I

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suppose, kicking and screaming into the role of administrator, first for itinerant services

and then for schools in Arizona and in Massachusetts. I’ve really had the privilege to

work with some of the folks that you have cited tonight, Tracy and Ellen in particular, by

the way in Massachusetts.

One thing that I think makes my perspective a little bit unique is that I was trained in

doing functional visual fields in orientation mobility from a low vision perspective, and

was able to apply that training to working with students with acquired brain injury in

particular. It was not just the assessment that I needed to do, but also the applying that

assessment information in situations where the student was actually moving through the

environment, and so the student was changing and environment was changing and you

guys can all complete my sentence on this. I know you know what I’m talking about.

I want to touch on two things, real quickly. I am going to talk a little bit about APH and

our services, but I also want to talk about challenges that I see as somebody who is a

service provider and then someone who is supposed to coordinate those services. I’m

just going to be really blunt here and say that teachers are stretched and they are in

charge of a full week of time when they are physically present for part of that time and I

hear parents and other people’s frustration about that and have certainly felt that as a

teacher, where you’re sort of running from place to place trying to put things together

when really you needed to be in one place with that one child for a full week. So, one of

the barriers that I would describe is the fact that teachers are too stretched. Their

caseloads are typically too large to do the things that they need to do.

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And then, from me personally the biggest barrier as a teacher and as a service

coordinator has been the training and the follow-through of the staff that’s working with

the student for the remainder of the time when the teacher is not there. I am not

cognizant of how that is being taught in universities right now, but I think that learning

skills to train effectively and ensure that the program is in place and that the

modifications and accommodations are made to the environment and that those

continue and aren’t dropped is critical and it’s really, really challenging and really tricky.

Then, finally, I just wanted to talk just real quickly about APH. One of the things that I

feel really good about is that our commitment to CVI began with the inclusion of

individuals with neurological visual impairment in our quota registration that the category

of that—it does have two categories: One, meeting the definition of blindness and

functioning under the definition of blindness, and that second one is the one where

children and adults with neurological visual impairment qualify.

We register about 64,000 individuals in the country under the federal quota program

and there’s a lot of details on around that I don’t need to go into right now. But I want to

highlight that right now, we have in addition to what we have for sale right now, we have

such unique products in the pipeline currently focused very specifically on CVI and are

applying the principles of universal design through all our product development to make

more products accessible to students and individuals with CVI. And so, that’s a real

commitment that we have to that.

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Finally, another barrier that I see is the variability and range of needs of all students with

either ocular or neurological-based visual impairment. They’re great. When you’ve met

one child with a visual impairment, you’ve met a child with a visual impairment. I know

I’m speaking for other people with that and so, getting a handle on that and ensuring

that each child’s individual needs are met, I think continues to be a major challenge for

us in this field.

Mark Richert: Thank you so much, I really appreciate your comments. Rona, we’re

going to be turning to you next, but after Rona Pogrund, then we’re going to look to our

colleague, Sandy Lewis to talk to us a little about the Council for Exceptional Children

teacher standards, and then finally, last but not least, of course, to Amanda Lueck for

some thoughts on all of what we’ve just discussed.

But so Rona Pogrund is the—Well Rona, you introduce yourself, why don’t you? I’ll

leave it you and turn it over to you.

Rona Pogrund: Okay, thank you, Mark. Yes, I’m Rona Pogrund and I’m a professor at

Texas Tech University. I coordinate the program for teachers of students with visual

impairments at Texas Tech. I have been in the field 45 years, been around a long time.

When I started in the field, there were no children with CVI. We didn’t know about that

back then, but things have certainly changed in this field and in the program that I’m in

now.

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I first just want to say that my entire career has been as an advocate for children with

visual impairments, all children and as an advocate with parents. So, I really appreciate

the parent input tonight, and I’m always wanting to hear a parent perspective. I think it’s

a really important piece of any professional in this field is to listen and to respond as

much as possible to the wishes and the priorities of parents.

Just thinking about the issue, being at a university program, fist I want to say that in our

university, and I can’t speak for all of them, but I’ve talked to other colleagues. We do

address CVI in multiple classes and we have an anatomy and functions of the visual

system that we include that content in. We use Christine’s Cortical Visual Impairment

book as our textbook for that topic and our students view many of the videos on Perkins

and PSVDI and other places that have a lot of resources as part of our coursework.

They know about the CVI Range. Are they experts in it? No, but they know about it.

They learn about it. They know what it’s for. They know what the levels are and that

they are familiar. Then, we also focus on strategies in some of our strategy classes and

working with CVI and our [indiscernible] has addressed this. So, it’s infused throughout

in different courses.

As with every topic that we have in our teacher preparation program, we never get to go

deep enough. We are limited by the number of our courses that are approved by our

state. We are limited by our university process of adding courses. First you have to go

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to the state level and get the standards changed. It’s quite involved. If it were just a

matter of we need to add a course, let’s do that next year, I think that would be

happening in more places in terms of what you had mentioned UMass has done.

But it is not a simple process and it’s certainly something that I think all universities

need to start looking at. It’s how we are going to address that. I think the piece that I

think Diane and Dorinda brought up about for this population as with all of our students,

the whole collaborative consultation piece and being part of that team, that is our

trademark outcome at Texas Tech.

We have collaboration around the specific technology in our teams and so every course

is infused with collaboration and parents are part of that team as well as all those other

Special Ed teachers and related service personnel. Our teachers coming out now are

getting a different approach than what I learned back when I was in school a long time

ago. Because, if you don’t do that infusion into daily routines, everything we’re doing

doesn’t make a difference. I think the mindset of new teachers is different than the way

teachers were trained a long time ago. I don’t know the teachers where your children

live, but I think that you will find teachers that have been around a while may know less

than teachers coming out with a little bit of experience know more.

I have to say that one of the things we promote is we can only give you foundation

knowledge in our courses in every area and then you’ve got to continue to go to

conferences. You’ve got to take webinars and courses and do continuing education,

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because it’s impossible to do the depths of any topic in a pre-surface program. So, it’s

kind of the beginning of those reap knowledge and then you’d have to go for the

resources.

The CVI endorsement is I totally would encourage my students to do that when they are

out and complete the program and have a little bit of experience because they need

that. I think I will stop there.

Mark Richert: Okay, great. Thank you so much. Then, over to Dr. Sandy Lewis is the

Coordinator and Professor of Visual Disabilities Program of Florida State University.

Sandy, over to you for anything you may want to say, but I’d love to hear especially your

thoughts on how the CEC teacher standards are addressing any and all of these issues.

Dr. Sandra Lewis: Thanks, Mark, and thanks to AFB for this opportunity. With my

teacher preparation hat on, I’d like to endorse what Rona has just said about the

difficulties of being a teacher preparation person. You kind of think you have all this

power, but really there are limitations at every single turn, not so much in terms what

can be covered in any one class, but of the large number of competencies.

We all have to face the jobs of a TVI are extremely complicated and the children we

serve are very heterogeneous in age and disability and ability and everything else and

that makes the preparation of those teachers very challenging. As Rona said,

collaboration was kind of the hallmark of what she hopes is an outcome of the teacher

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she prepares. I think at FUS one of the hallmarks might be—we’re giving you a start,

but you are not finished. You need to go on and get more professional development to

really be good at your job and we expect to see you at conferences and we expected

you to buy JVIV and we expect you to do all sorts of things to continue your education.

Well, you asked about the CEC DVI standard. For the last three years, a group of us

who are members of the Council for Exceptional Children Division on Visual

Impairments and Deafblindness have been working on a new set of professional

standards. These are a specific specialty set for teachers of children with visual

impairment. The last time this activity was done was around 2010 and it involved very

little input from the field. This time we’ve been committed, as is required by CEC, for a

great deal of input from stakeholders in the field.

We have worked with AER. We’ve worked with members of CEC and members of the

deafblind groups to develop a set of standards that matches the requirements put

together by CEC and these standards are now being validated. The validation study

ended as of Monday, and at this point the standards that have been developed and

have now been examined by people in the field from AER and the Division of Visual

Impairment and Deafblindness of CEC will go back to their knowledge and skills

committee for final review and then will be sent to us. We will be asked questions at

this point.

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Many of you may have received that document and asked to validate it. We are not

able to make changes to it, except for to delete items that are considered to be

unnecessary. We were not in the development of these items. We were given very

specific guidelines and we were not allowed to identify, for example, specific visual

impairments, whether ocular or cortical visual impairments. We had to generically

identify what are the roles and responsibilities, what are the knowledge and skills of

teachers of students with visual impairment.

And so, you will see in this relatively long list, only one mention of cerebral or cortical

visual impairment and that is in the basic knowledge of development of children and the

visual impairments that impact their development. That doesn’t mean that CVI and

other ocular or other disabilities aren’t covered. It’s just that they aren’t specified. I

believe that CEC DVIDB is planning to put together a guidance document for people to

interpret the guidelines once they have been totally approved and at that time, we will

be able to take more input from people in university programs, parents, practitioners

about what is meant by each one of the knowledge and skills items in these standards.

This has been an iterative process that’s involved a lot of people. It’s not done yet, and

that’s the major message I’d like to share now.

Mark Richert: Great. Thank you so much, Sandy. Amanda Lueck is Professor Emerita

of Special Education at San Francisco State University and clearly one of the leading

thinkers in this whole area of cortical and cerebral visual impairment. Amanda, I’d love

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to get your thoughts, not only on what you see as the major barriers to providing quality

Special Education to kids with CVI, but your perspective as you have been teaching and

working in this area for a while.

What are the things that you think are the hardest things for people to understand about

CVI, who are not very familiar with it? What’s the hardest message that you find is hard

to get through to people?

I hope Amanda isn’t on mute, but my colleague, Sarah, with AFB is on the line with me.

Sarah, I don’t know if you’re in connection with Amanda directly so that we know if she’s

hearing what we have to say.

Sarah Malaier: The last I heard, she was hearing—

Amanda Lueck: Okay, I’m back.

Mark Richert: Yes, you are. Over to you.

Amanda Lueck: I want to thank you for inviting me to be on the panel. It’s an honor to

be on the panel, especially with so many parents, because I think that parents are the

ones who really understand children with CVI, because in order to understand CVI, you

have to live with it. It is so different for every person who has CVI and you, parents, are

intimately aware of what the needs are of your children because you see them 24/7.

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One of the things that struck me about all the things that people were saying is that

everybody here wants everything to have been done yesterday, and I’m included in that.

We all want what’s best for kids with CVI. I think that there are more common goals

amongst this group, and one of the things that’s been hardest with CVI is to bring all the

groups together to share knowledge, to understand about referrals, and to work

together.

But if we look at the commonalities, we all want pretty much the same thing. We want

methods to assess and teach that work. We want to keep up to date with new

information about CVI. We want to ensure that all children with CVI are identified and

served. We want to ensure, and one of the mothers talked about this, early diagnosis

and what follows from that is the intervention and the earliest intervention possible to

promote optimal outcomes. We want to ensure that all those with CVI whose

impairment may not be apparent or identified, because there are lots and lots of children

out there whose CVI is not apparent. We want to ensure that parents are informed with

up-to-date information. We want to ensure that parents are given a voice and the

children’s voices themselves are heard.

One of the things that we haven’t discussed—we’ve talked about teachers of the

visually impaired, but we need to ensure that professionals receive appropriate training

across disciplines, because it’s not just a single discipline type of condition.

Developmental pediatricians, neurologists—we have to get the diagnosis, practitioners

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in the NICUs, ophthalmologists, optometrists, other Special Ed teachers, general ed

teachers, OTs, PTs, we need to ensure that everybody has some understanding of CVI.

We need to ensure that research in CVI is promoted and funded in order to understand

all the behavioral manifestations and tie it to electro diagnostic and other diagnostic

methods. New behavioral manifestations in CVI are coming out all the time. What we

knew twenty years ago is passé. What we knew ten years ago is being turned on its

head, and we need to keep up with all these changes. We need to promote the

development of an array of valid and reliable assessment methods that pinpoint issues

for children who have CVI, and we need to promote the development of evidence-based

interventions.

Now, it may be that even in ten years from now, we’re not even going to be talking

about CVI. It may be that the medical community refines what comes under an

umbrella term to a more precise definition of where the brain-based issues are and how

to address them. That would be fabulous. We need to keep up with all of that. We

need to ensure that appropriate funding is available for all the common goals that we

have, but mostly, we need to really, really understand that we have common goals and

we need to work together. Thank you.

Mark Richert: Thank you so much. Amanda. That is a great transition. Our friendly

neighborhood operator, Leslie, who’s been very patient and listening to all of this—and

I’m sure learning a lot about CVI that I’m sure she’s never heard of before. Leslie is

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going to work with us on how you all, who are listening, can queue up to make your

comments or ask questions of the panel as a whole or any of the specific panelists.

So, Leslie, why don’t you brief us all on how people can do that?

Operator: Thank you. [Operator instructions].

Mark Richert: I’m sure this group is going to be very talkative, but as people are

queuing up, I’m going to ask the first question of this group. So, we advertised this call

as being the first in a series, I hope. Whether AFB is leading it or not is not that

important. The most important thing is that this conversation be initiated, and I think

we’ve done that. That’s really kind of the first of its kind in a way.

I hope that the conversation continues, but the purpose really is to start a conversation

particularly around developing consensus for how this field, particularly here in the

states, but I’m certain that it has implications around the world, what we can do from a

policy point of view or advocacy point of view to engage in some systems change in this

country in particular.

I mentioned at the outset about the Cogswell-Macy bill. There may be other

approaches. I have certainly heard a number of things being proposed around the

country. I’ve heard everything from some kind of policy, whether it be legislative,

regulatory or otherwise some kind of mandate or requirement on university programs to

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change their curricula. I have heard about state level certification that is specific to CVI

being required at the state level. I have heard a number of folks propose, and I believe

there are instances around the country where this is actually the case, where there’s a

certain amount of continuing ed, professional development being expected specific to

CVI required of TVIs in order for them to “practice” in a particular school district.

I would be very interested to hear as we’re having, I’m sure, lots of folks queue up for

questions and comments, to pitch just to this panel what you all—and we’re not going to

go through the whole list—you all speak up who wants to. Say your name and indicate

if you want to address this. But, I would love for folks to weigh in on your thoughts on

any of that, the viability of any of those strategies and why we should be doing them or

what cautions there may be in doing any of that. How’s that for an easy question? Who

wants to take that first?

Rebecca Davis: Mark, this is Rebecca Davis. Could I just say—

Mark Richert: Hi, Rebecca, go for it.

Rebecca Davis: Hi. Before we get to the question, I wanted to sort of lob this back to

you, because I know that AFB is really angling themselves in their transition as being

the organization that advocates for poor people with blindness vision and cortical visual

impairment. So, if we are going to continue this conversation, which I think clearly the

fact that you’ve just had your phone lines blown out, you see that there are a lot of

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people who need to talk about this and we need to have some action that I hope that

AFB continues to sort of lead the charge and would be willing to host the next call,

because you guys are the policy changers and we can learn a lot from you. So, I just

wanted to—

Mark Richert: Well, that’s very nice and the check is in the mail, Rebecca Davis. So,

thank you for that, but let me hear your thoughts on the question.

Rebecca Davis: Well, you said the—isn’t AFB working on guidelines, re-upping the

guidelines? What are those about? The education of children who are blind or visually

impaired that haven’t been updated for about 19 years, is that the case?

Mark Richert: Yes, you’re onto something. Go ahead. Go ahead.

Rebecca Davis: Yes, so where can we get cortical visual impairment put in that? I was

interested in what the gentle lady from Texas Tech said about how it’s on a state level

that this is not a simple process to get the universities to provide more robust training on

CVI.

It’s not simple, but it’s not simple to be a parent of a child with CVI. It’s not simple to be

a child with CVI. I [audio disruption] all these lovely ladies who have been advocates for

our kids for years and I’m so honored. We just need to know what needs to be done

and we can get it done. I think the fact that you have so many parents on the line we’re

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willing to put our boots on the ground and get it done. We just need to know how to do

it.

So, that’s where I would throw it back to you, Mark Richert, about the guidelines. I

would like to ask the university programs about how do you make it more robust. Or do

you have to create a different category underneath TVI? Do you need to do that? I just

would love to hear someone’s idea on that.

Mark Richert: I’d be glad to answer the specifics as time allows here for the thing on

this overall field-wide, along this field-wide project that we’re all engaged in to update

policy guidance. But I want to make it a priority of our panelists who are interested in

addressing this question of what are the strategies policy-wise that we should be

pushing at the federal or state level to address any of this and the viability of the

different proposals.

Brenda Biernat: This is Brenda. I’d like to say one thing. When we’re talking about the

state versus federal level or we’re talking about having a different kind of program, the

thing we need to focus on is when I am sitting at the table with my son’s IEP team, and I

am the person there who knows the most, whatever that person is that we come up

with, it needs to be at the table.

Having different things in different states, that’s not going to work, because people don’t

just stay put, as Rebecca can surely speak to that and she’s told us about that. It needs

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to be something consistent and it needs to be something where that person is going to

be at the table. That’s so important, because right now, CVI parents, we can’t get that.

That’s what we’re advocating for right now.

There’s nothing in our state regulations. In Washington State, somebody to work as a

teacher of the visually impaired, they don’t even need a vision certification. They don’t

even need that. It’s so different everywhere you go.

But that person whoever it is needs to be at the table, because we can’t keep fighting.

Teachers of the visually impaired, they like to talk—we know that there’s a national

shortage. We all know that, an even greater shortage of orientation and mobility

specialists. We haven’t talked about them at all tonight, but that’s part of it, too. The

thing is, we need those people and they are—it’s different everywhere. The priority is

really getting that person on the team.

We are busy. We talk about TVIs being busy and the shortage, but try being a CVI

parent, Dr. Roman has a quote. I have seen her present many, many times over the

last seven years and something she always says is CVI parents are the busiest parents

I know, and we’re already working so hard to get this on our child’s team so that our

child have an appropriate education. They have access to an education, they have a

right to that, and that’s what we need to make happen.

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Mark Richert: I totally hear you about the fragmentation of the state level approach for

sure. Sorry, it sounded like someone wanted to say something.

Rebecca Davis: Sorry, this is Rebecca one more time, and we will let everyone speak

again, but ladies, you have to understand that we are parents and if you have children

and if this was your child, you would be as passionate as we are and I know you

understand that.

The reason you’re seeing this rise in parents now and you are understanding that we’ve

all had a chance to take the CVI Range home with us. We’ve had a chance to get the

book and to train ourselves and to find the handful of experts and to work with them.

So, you’re going to have anecdotal evidence from us to tell you that the CVI Range has

made all the difference in our child’s ability to learn. You also have Dr. Sandy

Newcomb. She evidenced-based her dissertation—was to prove the validity and the

liability of the CVI Range.

We have one educational approach right now, and I honestly could not care less what

anybody thinks one way or another. It is valid. It is reliable. It has helped my daughter

learn. I would welcome anyone in a research basis to do their own research and come

up with another one. I would invite you to do that and I’d take you out for coffee

afterwards and I’d love to hear about it.

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Right now, this is what we have, and this is what our children are learning with. The fact

that we can’t get other TVIs trained on this is crazy-making, because the thought that

other children have to sit in their classrooms and not have access to their education,

because that TVI or that Special Ed teacher or that occupational therapist doesn’t know

about the CVI Range, it breaks my heart. These children deserve better. We can do

better and—

Mark Richert: I think there’s no question that we recognize the challenge, right? The

real issue is how is it we go about effecting appropriate systems change that actually is

going to make a difference.

Diane Sheline, I’m going to call you out. You might send me an email tomorrow that

says, why did you do that to me? I think you invited me to do this in advance, and I

know you are someone who works in this area all the time. You’ve sat for the Perkins-

Roman certification in CVI. You hold that. You’re a proud displayer of that and good for

you, but talk a little bit about your sense as someone who obviously values that. How

viable is it to expect that we somehow mandate or require that kind of continuing ed or

professional development for TVIs as a national solution for addressing these

challenges?

Diane Sheline: Well, Mark, as you said, I am CVI Range endorsed and I am very, very

proud of that to be able to say that I am endorsed. I do a great many evaluations using

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the CVI Range and I have seen huge differences in kids when you do have a good

assessment completed and you can figure out the appropriate strategies to use.

So, having said that, there are two or three things that worry me a little bit. New

teachers coming out of programs if there was a mandate for them to go through the CVI

endorsement, it worries me a little bit, because those professionals that attempt the CVI

Range endorsement really need to have some experience under their belt. Some of the

first questions are what type of population, how many evaluations have you done? I

can’t remember exactly all the questions, but you have to demonstrate that you’ve had

some experience, so new teachers coming right out of the gate might not have that. In

addition, you need to be able to have completed the CVI Range with a lot of students to

be able to pass the test. I think that you have to have some good knowledge.

So, brand new teachers trying to get endorsed, if that’s some kind of mandate of what

you said, Mark, I don’t think that that should be a mandate for new teachers definitely.

That’s a concern of mine because I think that they might have a hard time passing it.

There’s some heavy standards in place, and they should be in place to get the

endorsement, but it would be difficult for a new teacher that hasn’t done a great many

CVI Ranges, it would be difficult to pass.

Secondly, when I’m out and around the United States doing teacher trainings and

working with different people out and about and groups of teachers, I’m hearing more

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and more teachers say, I’ve completed the CVI Range with my student. I know where

they’re visually functioning, but now what? But, now what? What do I do now?

I just want everybody to know that by completing the CVI Range endorsement, they

don’t teach the now what. The Range endorsement is to make sure that you’re

completing the CVI Range correctly. So, we really need to address that, the now what.

That’s what I’m working very, very hard to try and help teachers both here in Texas and

out and around the nation with how to design a program once you know the student’s

CVI Range, how to design a program that’s appropriate for them and that meets their

needs.

Then, finally, just the other concern that I have is that, and I don’t know why this is

happening, but I feel like there’s not enough teachers going through the Range

endorsement. I know that here in Texas there’s only one, that’s me that I know of at

least.

I think that there’s many, many, many teachers out in the field that I know of that are

very well qualified and can complete the CVI Range appropriately on students. It

concerns me if that’s going to be a requirement, as you said, Mark. As somebody else

earlier mentioned, there is a dearth of professionals in our field, and there’s definitely a

dearth of professionals that are CVI Range-endorsed.

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I’m not quite sure why we don’t have more. I think it’s been going on for about a year

and a half, September of 2016 I think is when it started, but I don’t know why there’s not

more teachers that are endorsed. I have some ideas, actually, but that’s not what we’re

talking about today.

Mark Richert: I bet you do have lots of ideas. With that, we are going to ask our

operator, Leslie, to first of all, tell us how many people are in the queue.

Operator: We probably have about 12 people in the queue as of now.

Mark Richert: All right, just do me a favor, keep track of who the 12 th person is. We’re

going to do this as much as we can, obviously time keeps ticking, and we’ll take as

many calls as we can. If we do slip a little bit past our time, if people need to leave, you

need to leave, but we’d welcome you to stay, and we’ll take as many of these questions

as we all have time for. Let’s get to it. What’s our first question or comment?

Operator: All right. The first question comes from Dan Roberts. Please go ahead.

Dan Roberts: Yes, this is Dan. I’m Founding Director of MD Support, and I work with

Prevent Blindness as Editor-in-Chief. I have a question about a possible subset of CVI

that I’ve noticed in my earlier teaching career and my current work with low vision,

adults and children. In addition to the physiological and neurological pathologies of the

condition, could CVI also be caused by delayed vision correction? And I’m talking about

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the children who are not corrected visually until, let’s say, after the age of seven where

the brain rewires or doesn’t wire itself correctly for cortical vision because of their poor

vision.

So, they become essentially, let’s say, well Michael May is a good example. I’m sure

most of us have heard of him. He was blinded at the age of three. He never

developed, therefore, many of the visual connections in the cortical vision area, and

when his vision returned to him, he was not able to perform well as a visual person.

He’s a friend of mine and he admits that he would just as soon have stayed blind

because it was much easier because that’s the way he was wired.

Mark Richert: Thank you very much for your comment and your question. Let me ask

first to Christine and/or Amanda if either or both of you want to weigh in with his

question.

Dr. Christine Roman-Lantzy: This is Christine. I’ll be glad to say something.

Mark Richert: Fire away.

Dr. Christine Roman-Lantzy: So, CVI is an issue of deprivation. Kids with CVI see the

world. The information’s going into their eye and passes through the front part of the

visual system to the back part of the visual system which is usually where CVI exists,

but obviously something goes very wrong due to lots of different causes. Kids with CVI

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theoretically see, but they can’t interpret what they see, and they see the world,

according to adults I’ve talked to, they see the world, adults with CVI, as kind of a

kaleidoscope of meaningless colorful color and pattern.

It’s there. They see it, but they can’t actually sort it out and put meaning around it.

That’s why things that are familiar are easier, or things that are moving, or things with

vibrant color, and so on.

Someone who does have deprivation, somebody who’s had for example cataracts that

haven’t been treated, we know from the Hubel and Weisel studies that deprivation can

forever affect the visual cortex. So, the kinds of experiences that a child with CVI or

another person who’s not getting clear visual messages through the front part of the eye

are all going to have effect because the visual cortex develops through experience

whereas the eye develops through biology.

In short, the job of the teacher of the visually impaired or the CVI-endorsed [audio

disruption] is to frame those experiences to help give them meaning. Yes, I think that’s

a very legitimate possibility. Hopefully, it does not happen very often, but I’m sure it

does affect that child’s ability to see the same way other children do.

Dan Roberts: Would I be correct in calling this late-onset CVI or something like that?

Could that define it?

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Dr. Christine Roman-Lantzy: Yes, I think you could call it that. I wouldn’t even call it

late-onset. I think I would call it acquired CVI.

Dan Roberts: Acquired it, that’s a better answer. Thank you very much for your time. I

don’t want to take any more time.

Mark Richert: All right, thank you so much. Leslie, who’s next?

Operator: Our next question comes from Mary Zatta. Please go ahead.

Mary Zatta: Hi, this is Mary Zatta. I’m the Director of Professional Development at

Perkins School for the Blind, and thank you so much for giving me this opportunity to

speak. I have mostly comments, and it’s in our experience at Perkins we have been

offering classes. Well, first we started with one online class for CVI. That was three

years ago. We offer this class quarterly. We offer it to 50 people and we continuously

have a waiting list. We have more recently developed two additional classes, one on

CVI Range scoring, and one on CVI complexity, and again, we continuously have a

waiting list.

To me, this speaks to the huge need in the field for more training in the area of CVI. In

terms of the endorsement, I think that there’s been obviously different responses to the

endorsement, but it’s important to know that the endorsement is a demonstration that

the individual has attained a level of competency in terms of administering the CVI

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Range. We are not saying that this person is an expert in all areas of CVI from soup to

nuts, but that they are competent in administering the Range, and that’s an important

distinction to make as far as I’m concerned.

We have hundreds of people in the pipeline for the endorsement. We have

approximately 50 folks who have become endorsed. There is a directory. If they have

chosen to be part of the directory, you can see who is endorsed in each state.

This grew out of something that was a need in the field, not something we were looking

to do. It just became so apparent that there was a need to be filled, and we chose to

step in. I just wanted to share those comments with the group.

Mark Richert: I really appreciate that, Mary. Thank you so much. Glad that you were

able to queue up. Leslie, our next caller, please.

Operator: Next caller is Angela Nugen. Please go ahead. Angela, if you’re muted,

please unmute your line. Okay, we’ll take the next caller. Mary Ann Roberto, please go

ahead.

Mary Ann Roberto: My name is Mary Ann, and I am a teacher of the visually impaired

for 35 years. I’m also Perkins-Roman CVI Range endorsed teacher. I have a unique

perspective because I have two sons who are both blind. So, my comment is to

university professors because I really take offense at what was said about expecting the

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teachers to have information and then to go graduate school as a teacher of the visually

impaired and then continue their education. I think that’s completely false.

There’s no way a teacher of the visually impaired would leave a university program

without being proficient in braille. There’s no way. You wouldn’t pass the program.

When I was in college 35 years ago, braille was such an important part of our

education. Certainly my son who’s gifted and is reading braille, I certainly want his

teacher to be more than proficient.

I think what is really important is to understand that my son came home from China five

years ago. As soon as he enrolled in his class, he was five years old, as soon as he

enrolled in a school, he was taught braille. There were no questions. There was

nothing that had to be looked at. I didn’t have to worry about his IEPs. Everyone

understood how to educate him.

These parents who are on this call and across this country do not have capable

teachers. The teachers who are coming out of the programs are absolutely not

prepared. I think the question is, and wringing our hands about it is not helping these

children. These parents cannot wait. Their children cannot wait.

I think that saying that it’s about—I mean we all applaud Perkins for what they’re doing,

but I think it’s this issue that has to be addressed that these kids cannot wait for

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standards. They cannot wait for someone to decide where they’re going to fit the

largest population of children with visual impairment into their systems.

Mark Richert: I really appreciate your comments and questions. I think we got what

you are driving at. Lord knows, we’ve heard it a couple of times tonight, and I want to

ask our university faculty on the phone to weigh in if they wish. Rona? Sandy?

Rona Pogrund: This is Rona. No, I appreciate what you’re saying. Believe me, it’s

frustrating at our end to not have more time with our students. It’s very hard to decide

what’s priority, so I do understand what you’re saying. If we could have our entire

course tomorrow, that would be great. I would love that, but I don’t think that’s going to

happen right now. Your kids are out there and need the attention now. So, I think as

we look to make changes at the university level, it’s something that university personnel

have to look at and figure out how to do that within their state. I don’t think it can be

done on a national basis just because unless it gets into federal law and then it comes

down from that direction.

I think that looking at these additional ways to get that training quicker is probably going

to help current families more than going through a bureaucratic process to add a

course. So, Perkins is doing an amazing job. Texas School for the Blind and Visually

Impaired has lots of information and trainings on their website and they provide

trainings. Diane is doing trainings. There’s a lot of ways for teachers to get that. I think

that we need to be encouraging all of our teachers to take advantage of these different

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opportunities that are already out there because I don’t think the university program fix

is going to happen overnight. I agree, people shouldn’t have to wait.

I think I’m looking at a bigger issue which really concerns me, what Christine said, and I

didn’t know that was a statistic that less than half of kids with CVI even have a teacher

skilled for visual impairment, and that’s a concern to me. And, when I hear things like a

student is getting served by a TVI 30 minutes once a month, it doesn’t matter whether

you have CVI or any other ocular visual impairment, that is a huge issue and challenge

in our field is the itinerant service model and how students are getting served.

I think that as we look at this problem, we need to look at it in a broader sense of what

do we do about that. One of the things we’ve done in Texas is come up with a service

intensity scale which includes all students with CVI if they’re identified, which goes back

to the early identification. That is a way to begin making sure that students are getting

served in all areas, the expanded core curriculum, which I think applies to students with

CVI as well, so they’re more complicated.

Alicia Waugh: This is Alicia. I just had a question for those people in the university

programs. What proportion of curriculum is devoted to ocular-specific needs like braille

compared to CVI-specific needs like say the CVI Range? What proportion of the

curriculum is focused on ocular-specific needs versus CVI-specific needs?

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Rona Pogrund: I don’t know. Sandy, you might want to address that. I don’t break it

out that way because we’re teaching evaluation strategies, and instructional strategy,

and adaptations, and how to approach an individual child [audio disruption] collaborate.

It’s not broken out by the topic as much as the strategies and the methods that you

would use for any child.

So, I don’t know, Sandy, you may want to go with that from your perspective.

Dr. Sandra Lewis: No, I would agree, Rona. We’re talking about strategies for

assessing individualized needs, working with individual children and their families, and

really individualizing instruction to meet the needs of the child to move that child from

where he or she is right this second to the next step so that he or she can make the

most of what capabilities exist.

We talk about CVI, and as you earlier indicated, in a variety of classes. We teach the

CVI Range as one of the tools that teachers use to identify needs and to develop

strategies, but I wouldn’t say it’s separated out as part of the curriculum, as a distinct

part of the curriculum. It is part of what TVIs do within their regular job.

I was struck earlier by somebody who said that the teachers with whom she’d worked

weren’t familiar with this. You mentioned you’ve been in this field for some 45 years or

something. I’ve been in just a few years later, less than you have because I’m way

younger than you are, Rona, like a couple of years maybe.

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We did a survey at FSU recently that had over 600 CVI respondents. Half of them had

been teaching since before the turn of the century. So, it’s not, as Amanda said,

something that’s going to turn. It’s like an ocean liner that’s moving through the ocean.

It can’t just turn on a dime. These are changes that are going to happen but are going

to happen as the system changes. It’s not going to just switch, I don’t think.

[Overlapping voices]

Mark Richert: What I’m going to do at this point, as your friendly neighborhood

moderator, is cut this off, and we’re going to go to the next question because we have

quite a few folks waiting in the queue.

So, Leslie, over to you, please.

Operator: All right, next question is from Andrea Thaxton. Please go ahead.

Andrea Thaxton: Hi, everyone. I am a mom of a child with CVI. He was diagnosed

about three weeks ago, so this is all new to me. This conversation’s actually making me

a little more nervous about it because we recently got the diagnosis. But the big

question is, okay, now what? Now, what do we do?

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We have him enrolled for PPCD because he turns three this summer. But now what?

Are those teachers at that school even qualified to be teaching him? Does he need to

be going elsewhere? I have no clue because it is so new to me.

Mark Richert: I’m sorry, what part of the country, state?

Andrea Thaxton: I’m in Texas.

Mark Richert: Okay. Great, well, I’m going to pick on Diane again. She’s going to start

throwing fruit and vegetables at me if I keep doing this, but Diane, I want to start with

you. The rest of the panel, obviously weigh in. But what do you say to parents that you

meet for the first time who frankly ask exactly that kind of a question?

Diane Sheline: Well, I say exactly what you just said, where are you at. And Texas,

that answer, it’s a big state over here in Texas. Then, it kind of boils down to if she’s out

in a very rural area or in one of the bigger cities, but certainly we’ve been working very

hard in this state to make sure that teachers have training. She can email me, and we

can chat later.

I think that the bigger cities, I will say, across the nation, the larger cities seem to have

more training that is accessible for teachers to go to, and that’s with anything. When

there’s teachers that are away from the larger cities, there’s just less training, and this is

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something that is going to take some time. Somebody else has already said that. This

is going to take time.

I do see changes. I hear from teachers more and more teachers that are more familiar

with the CVI Range. That certainly wasn’t happening two years ago, three years ago,

four years ago. So, I think that things are moving, but it’s like what Sandy said about

the ocean liner, it’s not going to turn on a dime, and we all have to really work together

at this.

That mom that just had that question, just email me. I’m at the website strategy

[indiscernible] and we can chat.

Amanda Lueck: This is Amanda.

Mark Richert: Go ahead, Amanda, go for it.

Amanda Lueck: For this mother, and for any of you parents out there, if you have not

visited the website, cviscotland.org, please do so because it’s a website written for

parents by parents of children who have CVI, and it’s written from the parents’

perspective. It has information on there that is blowing me away. I’m learning so much

from the parents who are placing things on that site, and I think it would be a really good

starting point. It has so much information, so please don’t be overwhelmed by it. Take

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it piece-by-piece, but it’s a wonderful place to start if you’re a new parent of a child with

CVI.

Mark Richert: Thanks so much, Amanda. What I was going to say before is that if any

of you who are listening are interested in contacting these panelists, I expect that you

can probably Google them, especially given their credentials that we’ve included in our

announcements. These are folks that are fairly easy to find. If you’re having trouble

finding them, please reach out to me or my colleague Sarah. I think you have both of

our email addresses. You certainly have mine, and we’d be glad to put you in touch

with folks directly.

Leslie, next question or comment.

Operator: Next question or comment comes from Dan Marquard. Please go ahead.

Dan Marquard: I am the father of a six-year-old in Phase II, and we received our

diagnosis at nine months but wasn’t ever told that there was something we could do

about it. Unfortunately, even the school system didn’t recognize that, and after some

learning on our end, we offered to pay for teachers to learn, to get education through

Perkins, and several teachers said yes, we’ll do it.

Then, about six to eight months go by, and nothing happens within the school system.

Finally, one of the administrators says, no, we can’t receive gifts. So that I think is an

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example of maybe how the troops on the ground in the school system are getting

squashed by the administrators.

It was at that point that we decided maybe the legal courses that I was taking on Special

Education law would pay off and hired our attorney to go after the school system.

We’ve seen some changes; however, I think it’s time to redo that and go back at them,

unfortunately. What is unfortunate as well is information being provided, even by

providers, having to gather that information is somewhat difficult.

I just want to stress to the parents that you can make a difference. It does sometimes

require legal proceedings, but don’t be afraid to do it because I think that that’s one way

we’ll wake the school systems up. Unfortunately, I didn’t want to go all the way through

to make case law and we settled it, but our school system—when you’re bound by all

these confidentiality clauses, and I ask some of the people on this call, some of the

professionals that if we’re asking for certain materials, there’s probably a reason.

With that, it makes me question the troops on the ground wanting to learn versus the

administrative level squashing it, and how do we stop that behavior?

Mark Richert: Thank you so much. Look, I’ll stick my neck out and say, I think that is

certainly a dynamic that affects a lot of kids and a lot of parents of kids who are blind

and visually impaired, quite frankly a lot of parents of kids with disabilities across the

country. It’s why we have for, what, 40 years, 40+ years, 44 years, have had a civil

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rights law on the books that a lot of people look at and say it sets up a far too

adversarial system. You look at the actual law itself and the regs, and it’s all about how

many days do you have to file this? How many days does it take to file that?

We actually had a situation in the early 2000s where a high-level appointee, this was

during the George W. Bush years, I’m not making any kind of political comment here,

but it just so happened that that’s when it happened. And this gentleman said

something like, he was a senior official at the US Department of Education, and he said

something like, I don’t know why it is that people think that teachers and administrators

wake up every day to try to find a way to screw kids with disabilities. It was a crass

comment. He obviously knew it was crass.

He knew it was meant to raise eyebrows, but his fundamental point was, why do people

think that the schools are out to get kids with disabilities when, in fact, there’s lots of

good people out there? Quite frankly, my personal reaction as well as my professional

reaction, and I think most people who heard those comments was, whether people are

intentional or not with their crummy attitudes, the reality of it is, this is a system that is a

nationally supported, or federally supported, but state-by-state run, and sometimes

locally structured, operated, and run, and managed system that is inherently

fragmented, that has nearly nowhere the amount of money that it deserves and needs,

with people who are unbelievably overburdened by the size of the caseloads that they

carry, the administrative responsibilities they have.

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As a blind person, and as a lawyer, I can tell you, I’d be the last person to sit around

making excuses for people. I’m just simply acknowledging the fact that there are macro

issues that need to be addressed that if we do not address them, a lot of the sort of

detailed stuff that we’ve been talking about tonight, I don’t want to say that it doesn’t

matter because that’s not the case, but it’s going to make it exceedingly difficult to move

any of the specific agendas that any of us are concerned about without changing those

macro issues.

What are they? Those macro issues are funding in nature. They are structural in

nature. They are planning in nature to make sure that states are actually thinking about

our kids in all of their diversity, and for my money, maybe there ought to be a law, and

maybe there ought to be legislation. Oh wait, yes, there is legislation, the Cogswell-

Macy bill, I’m sorry, small plug for that.

Leslie, next question or comment, please.

Operator: All right, next question’s from Lindsay Hilliard. Please go ahead.

Lindsay Hilliard: Hi, this is Lindsay. Can you hear me?

Mark Richert: Yes we can. Go for it.

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Lindsay Hilliard: Hi, I’m calling from Toronto, Ontario, Canada, and I sit on the

Pediatric Cortical Visual Impairment Society Board, and I’m proud of it. I know we’re

coming to the end, and people are tired, but I would like to say from a Canadian

perspective, we are your younger sister. All decisions made in the US definitely have

an impact here in Ontario.

It’s bigger than the US and what’s happening there. Similar things are happening here

in the school board. I actually am the lead for the Ontario Blind/Low-Vision Early

Intervention Program. What I’m most proud of our team is that we put children with CVI,

not as a priority, but they have their equal opportunity in our service just as a child who

was going to be a potential braille reader.

I think my comment is that I know TVIs have a full caseload, and I know they’re busy, so

when time is given, time given often equates to value. If children with CVI are just given

scraps of time, it’s really hard for the rest of the children’s team to value the new

understanding that needs to happen for children with CVI. I think it is really important

that we have qualified teachers, and unfortunately what I think happens is we all like to

teach to our strengths, and I think CVI is really difficult.

Everyone has said that it’s a very complex issue. I think if a teacher has the choice to

avoid working when it’s complex, and to show their weakness, I think it’s a really big

challenge. What we need to do is stop giving them the opportunity to make that

decision, that children with CVI have the rightful place on a caseload of a TVI. I believe

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very strongly that service should not be prioritized with braille readers first, then low-

vision, and then CVI can sort of just get what’s left over. I think each child’s service

needs to be based on need and not on diagnosis. It’s a very discriminatory practice.

Again, I know it’s getting late, but I really want to say that what you make through the

foundation and through all the stuff that’s happening through Perkins, we’re starting to

feel the trickle-down effect. Please keep going. These parents are dynamite and

they’re making a difference, and we don’t have the numbers to I think make the change,

so the parents in the US are going to make big changes for the parents here in Canada.

I keep telling the parents, keep moving forward. Don’t be silent. Your voices are

strong, and know that this is big. We are at a point of big change, and I’m really looking

forward to seeing this happen.

Mark Richert: Thank you so much for your comments. Leslie, refresh at least my

recollection of how many more we have in the queue. I know we talked about 12 in the

queue a while ago. I don’t even have any idea how far we’ve gone through that first 12.

Operator: We have 11 more. I think we’re about 3 from the 12.

Mark Richert: All right. Let’s do at least three more. I hope the folks who don’t get

selected don’t feel too frustrated. We’ve obviously gone a half an hour over our time, or

we will be at least a half-hour over. I don’t want to apologize for that because obviously

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folks are really interested, but it’s getting to be 10:30 on the East Coast, so let’s take

three more comments.

Go ahead, Leslie.

Operator: Next one is from Sharon Lehman. Please go ahead.

Sharon Lehman: Hi, thanks for having this tonight. Really, it’s awe-inspiring. I’m a

pediatric ophthalmologist, and I’ve learned from so many people on this call. It’s going

to take so many things to make this better, and just as the moderator said, from the

micro to the macro level. I just want to offer that we want to partner with the pediatric

ophthalmologists.

We know we have a lot of work to do, and we’re working on that. I think that we have to

go after the policy and it’s all about the resources. Let’s keep working at that policy and

resources. I just want to thank everybody for what they are doing. I’m so inspired by all

of you.

Mark Richert: I really appreciate your comments, and we will take pats on the back

wherever we can get them.

Leslie, next question or comment.

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Operator: All right, next question is from Barbara Lopez. Please go ahead.

Barbara Lopez-Avila: Hi, this is Barbara Lopez-Avila. I’m in Miami, Florida. Do you

hear me?

Mark Richert: We can. Fire away.

Barbara Lopez-Avila: Hi, I also want to thank you for having this discussion. It’s been

really great to hear everybody’s points of view. I have a child who is five-years-old and

was diagnosed at four-years-old. I have struggled to try to learn as much as I can about

CVI since that point.

I do want to say that I’m a developmental psychologist as well, so I think it’s going to

take a lot. It’s going to take everyone working together, the policy level, the school

level, and I think we parents need to be informed about what CVI is and the services

that our child should be getting. I have been fighting the school system here, and my

child was the first one in this school system that they did the CVI Range on.

To me, this was very surprising. This has been around for so long, how could this be

the first child that you guys have done this evaluation on? I think as parents we just

need to be sure about ourselves, and what our children need, and voice our opinions,

and make sure that they hear us.

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Mark Richert: I think that’s absolutely right, and obviously if you’re participating on a

call like this in Miami at 10:30 at night, you’re a dedicated mom, and so good for you,

and we appreciate your comment.

I tell you what, Leslie, time is our mortal enemy here. Let’s do this. Let’s try to zip

through. We’re not going to stop after each one of these questions. I want to hear from

as many of these callers that have been waiting patiently. Callers, when you’re called

on, if you have a quick question or a comment, we don’t have time to do a lot of longer

presentations, so let’s just hear what people have to say, particularly if you have

questions. Then, we’ll wrap this thing up with whatever our panelists want to respond

to.

Leslie, next question or comment.

Operator: All right, next question or comment comes from Peg Palmer. Please go

ahead.

Peg Palmer: Hi there. Can you hear me?

Mark Richert: Absolutely, what’s your question please?

Peg Palmer: Hi, I’m a TVI in Connecticut, and I’m a Perkins-endorsed professional. I

just wanted to thank everybody for their amazing comments tonight. I would like to say

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two things. One, since CVI has been the leading cause of vision impairment in the

United States for, I believe it’s about, ten years now, I’m perplexed as to why we’re not

seeing more education devoted in the teacher training programs.

I would just like to say that, as a TVI mentor, and seeing young TVIs coming out of the

program at UMass Boston, what we are seeing is certainly not experts coming out of the

field, but we’re seeing teachers coming out of the field that know what they don’t know.

They’re asking questions, and I think that is a huge step forward. I’m perplexed as to

why the rest of the country has not moved in the same direction as UMass Boston

where they’ve only begun to scratch the surface.

I would make the rather controversial comment that maybe TVIs need to come out of

their training programs not completely profession in braille, and they could go on and

learn the rest of that on their own. I don’t hear many comments on that. Instead,

they’re supposed to go learn all about CVI on their own. I just don’t think that’s the way

our field should be going.

Mark Richert: Thank you so much for your question and comment. Leslie, if we could

hold on and go to the next call. I will only say this has come up a couple of times

tonight, and I will share with this group—and it’s just one blind lawyer’s opinion. But I

will just share with you that I think it’s a real troublesome time when we want to try to

say that, well, we want to reduce instruction in this area in favor of promoting instruction

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in another. I think what we absolutely need to do is to find a way to bring solutions that

are best calculated to serve as many kids as we possibly can.

I will also tell you that I am not aware of there being anything like an epidemic in braille

instruction in this country. If teachers are being prepared and instructed in braille, I

think that’s a good thing. I frankly don’t know of any group of parents representing this

or that subsection of our community that don’t have exactly the same complaints that

we’ve heard tonight about out Special Education system, that their kids don’t get the

training that they need, that there’s not nearly enough of the training that they need.

I’m not at all suggesting that there aren’t particular concerns and issues related to CVI.

I’m simply telling you that we have to find a solution that does not say, oh, gosh, we’re

providing a lot of training in this area, and clearly that’s not needed, and we need to go

in this other direction. Just as a matter of public policy, I don’t think we want to go down

that road. But I’m wrong regularly, people who work with me know that all too well.

Leslie, next question or comment please.

Operator: All right, next question, or comment is from Gungin Rastogy-Wilson [ph].

Please go ahead.

Gungin Rastogy-Wilson: Hi, I’m the mom of the five-year-old with [indiscernible], and I

don’t have credentials that some of the other people speaking here have, but I have

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passion about this. I just have a few comments that I want to make. First of all, about

the ship and the ship in the sea that it’s going to take some time to turn it around. It’s

going to be turned around now. That ship is going to do a 180.

We parents have had enough of suing school districts, fighting with TVIs, fighting with

Special Ed departments. I appreciate and I understand on the administrative side that

change takes time, but this change is happening now. I really hope just [audio

disruption] has invited us to discuss this step, this continues.

Secondly, I heard a few people mention that there are teaching in university programs

about evaluation strategies and different types of assessment and interventions. I’m

outside of Philadelphia. The only assessment tool that we use is a CVI Range. So I

was curious to know, is there another educational approach that’s been validated?

What are the other things that are being taught? Is there new research being done?

Since we follow Dr. Roman’s CVI interventions, we have seen success with our child.

Thirdly, I just want to say for the people who have practiced in the field for a long time

that what I’ve heard in the past is that TVIs are taught in a holistic way about kids who

are visually impaired and ocular impairments. Many of those kids are [audio disruption]

impaired, and I just want to let you know the new crop of children coming out with CVI,

one of the subsets is preemies. Those preemies, many of them, their major disability is

CVI. Let’s put it that way.

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My son’s learning to read, and it is near to impossible to find a TVI who knows how to

teach reading to a child with CVI. I think a lot of this conversation for people who have

been in the field for a long time have been about kids who are multiply impaired, but

there are kids like my son nowadays, and they need appropriate teachers as well. I just

wanted to agree with Amanda Lueck’s comment that all this, and I think, Dr. Lehman

[ph] also said this, all disciplines, including ophthalmologists, the medical field teachers,

therapists need to be educated on CVI.

Last comment is that if it’s impossible to teach CVI at an adequate level in the college

level, then we need to have more master’s classes. I believe this endorsement is not

reasonable. We need to have more formal mentorship training programs, or create a

post-masters, or a certification program because that’s what we did. That’s what

speech therapists did. That’s what physical therapists, they raised the bar on their

degrees, and they have more people flooding their fields now. So, there are other ways

to be creative to get more TVIs in the field and to get them trained at a higher level.

Mark Richert: Thank you so much for your comments. Leslie, how many are in the

queue, please?

Operator: We have seven more.

Mark Richert: Yes, this is not going to work. Let’s do two more, and then we have to

call it a night. Next?

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Operator: All right. The next one is Susan Sterns. Please go ahead.

Susan Sterns: Hi, thanks so much. I just was thinking about some strategies that

might be able to be implemented faster than some of the other things that we’ve talked

about. One might be creating a grant program that might collect donations or

something like that to pay for TVIs to go through the Perkins endorsement program so

that they avoid that issue of getting a gift. They’d have to apply for it so that would step

around that problem.

Then, the other suggestion was the possibility of maybe organizing regional

conferences. I’m located in Oxford, Mississippi, and services around here are pretty

abysmal just in general. So, thanks so much. That’s it.

Mark Richert: Thank you so much. Leslie, our final comment from the queue, please.

Operator: It’s from Lynn Elko. Please go ahead.

Lynn Elko: Thank you very much. I’m also a parent of a child with cortical visual

impairment who was diagnosed when she was four, did not have a TVI who knew about

CVI until we left our school system because they were not able or willing to provide

strategies and interventions to meet her needs. So, we physically separated our family

so that we could be in a school where they didn’t know but were willing to get trained.

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This whole discussion about having a lack of knowledgeable, experienced individuals

who can teach our children how to use their vision is a huge concern. I know that

you’ve heard about it, but it’s just ridiculous that my daughter now at 15 is just learning

how to use her vision. Thankfully, we’re catching her before that window closes and

that center of her brain is not allocated for another sense.

So, when you talk about the fact that it has to be systemic, that it just can’t be

addressed at the university level, we agree. It can’t just be addressed at the university

level. We’re talking about that because Rebecca, and myself, and other mothers, we do

not want to see other families endure what our families have gone through.

While that will not help my child because she only has five years in school left, it’s going

to help another child, and that is enough to make me work towards getting that done.

AERs across the country need to step up. We need this to be addressed in Special

Education because when the TVI leaves, the Special Educator is with our child, and

they need to know how to deal with our child, and they need to know how to teach our

child.

So, we agree that this isn’t just a TVI problem. This is a Special Education problem,

and teachers in the general curriculum also need to be made aware of kids with CVI

and what they look like because they are going undiagnosed. They’re going

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misdiagnosed, and they’re being undertreated and under educated and completely

underestimated.

There is so much that needs to be done. Gungin, we’re with you 180%. We need to

turn the ship, and we need to start it now. So, what we need from you on the panel is

we need to hear from you how we can get this done, how we can come alongside you

and how quickly we can get this done. Thank you.

Mark Richert: Thank you very much. I would say that the one thing that I really

appreciate about your comments, ma’am, is that you’re committed to working on things

even though there may not be an immediate benefit directly for you, and I with that your

tribe would increase, if I can put it that way. Because quite frankly, there are no truer

words that have been spoken tonight than that this whole thing, whether we want it to or

not, it is going to take a while to change not because any of us can make it go any

faster and are not willing to do it or any of that. It’s not a question of will. It’s this is a

huge issue. We have to tackle it from a number of areas.

We are way overtime. I want to make sure that our panel has a chance to say hello and

good bye and good night. We do not have time for all nine of you to say something. I

want to know if there are any folks on the panel who want to say a word or two before

we close.

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Dr. Christine Roman-Lantzy: This is Christine Roman. I’ll just say thank you for the

opportunity, and I appreciate the frank responses from people. I think we owe the

families, at least the voices of the families should be the most dominant voices that are

the spotlight that shows us exactly where we need to go.

Mark Richert: Thank you, Christine. Any others?

Dr. Sandra Lewis: Mark, this is Sandy. I’d also like to thank the families for their

comments. My message about the ship turning was really about a factual situation not

something that I feel is impossible to do. I think people are right that a change is

necessary. The facts are you still have to process paperwork and you still have to

convince others, and I think that this call and these families are on the right track here.

Mark Richert: Okay, thank you, Sandy. Anybody else?

Brenda Biernat: This is Brenda again. Again, I wanted to say thank you and especially

thank you for all the parents for being on tonight and for following online. Please keep

being part of the conversation. We need everybody’s voice in this.

The missing element in all of this has been parent voices all these years. That’s what it

is going to take to make this change. So, thank you, thank you.

Mark Richert: Excellent. Anybody else? Amanda, go for it.

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Amanda Lueck: I just want to thank everybody that were also on the call. I really do

hope that this leads to a coordinated multi-disciplinary way of looking at CVI and solving

some of the issues around it because at the heart of it are the parents and the children.

Mark Richert: Thank you, Amanda. Someone else was looking for the floor?

Alicia Waugh: This is Alicia. Thank you for having me. I so appreciate it, and speaking

for myself and other parents, we just really, really want to urge the field that we need to

make that change quickly. We don’t want our own children to lose out. Obviously, we

know that things take time, and in the future it should help other children, but our kids

now are in the educational system, and they’re the ones that are losing out on their

education with people who are not able to appropriately address their CVI needs.

So, I urge the field it’s the parents are speaking up and letting you know that their

children’s needs are not being met. You need to know that and know that their children

are missing out on the education and to become the kind of person that they could be,

but they’re going to lose out because they’re not being addressed right now. That’s this

urgency that you hear from us parents.

Mark Richert: Thank you, Alicia. Anybody else before we wrap up? Okay, Dorinda

first, and then Rona. Go ahead, Dorinda.

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Dorinda Rife: I just want to say candidly that I appreciate the discussion being handled

in such a professional way and really look forward to continued conversation about

moving forward on this. Thank you.

Mark Richert: Wonderful, thanks, Dorinda, really appreciate APH’s participation tonight.

Rona?

Rona Pogrund: Just, thank you, Mark and AFB and looking historically, everything

that’s ever changed in Special Ed is because of parents. So, I applaud you to be the

voices and continue to do that. As most professionals in the field are also committed,

just like you, and we want to be your partners, so I hope that we do move forward in that

direction now.

Mark Richert: Okay, anybody else, or have we covered the waterfront?

Rebecca Davis: Rebecca Davis, Mark. I would just like to thank you.

Mark Richert: I knew you’d be in there somewhere.

Rebecca Davis: You knew it?

Mark Richert: Yes, ma’am, go for it.

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Rebecca Davis: You’re the [audio disruption] so you know where we’re coming from,

and thank you, ladies. We really want to learn from you. I think we all understand that

policy takes a lot of learning, and we have to do a lot of changing. I think you’ll find that

we are going to be avid students. So to all of you, thank you for letting us talk to you.

Thank you for answering the questions, and we’ll have more questions and we’ll turn

the ship together.

Mark Richert: That’s great, good positive thought. Anybody else?

Diane Sheline: Yes, Mark, it’s Diane Sheline.

Mark Richert: There she is, yes.

Diane Sheline: I appreciate all of the parents and all of their input and we’re working

hard. I think that there’s a lot of us out there working hard as we can, and we’ll keep at

it. Thank you for having me.

Mark Richert: Great, so on behalf of AFB, I want to make sure folks understand that we

do not intend to just wash our hands of this conversation. How precisely to manage a

topic of this size and with this much passion and interest is itself a challenge. These

calls are not cheap, and as you can plainly see, they are actually quite lengthy or could

be. So, we need to think of other ways in which we can best engage, I think, this

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community. We’ll be putting our brains around that, but be sure that we will be in touch

with all of you about how we can continue this conversation in the most effective way.

Rebecca Davis, you asked me something at the beginning and I said I would mention it

before we hung up, and that is that yes, AFB is engaged in a blindness field-wide

process to revitalize and expand the policy guidance that the United States Department

of Education last published in the year 2000. My standard joke about this policy

guidance, it’s not a very funny joke, but the ironic point is I’m not even sure that that

policy guidance talks about the internet at all. It’s really just obviously out of date. How

relevant can it possibly be for blind kids now?

A policy guidance document, getting that thing up-to-date is not going to itself change

the world, but it is the kind of thing that since we’re not going to wait for Congress to act,

and we’re not going to wait for the US Department of Education to possibly redo the

document, our field needs to take the bull by the horns and who better to help revitalize

and renew and update that policy guidance material than folks like the experts on this

call and the parents represented here, and other interest groups. So, AFB’s task over

the course of this next year, year and a half at least, is going to be to use our own AFB

leadership conference in early April in Oakland, California, but also other conferences in

the field, other national conferences as well as these kinds of conference calls.

Yes, you all were part of a process whether you knew it or not. What we’re trying to do

is to gather as much input as we can from the field, from different perspectives, and

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then have the document that is generated at the end of the process that’s reflective of a

consensus from as many stakeholders as we can and ultimately formally endorsed by

the leading organizations and leaders in our communities so that parents and educators

will have a document that, for example, when they go into that IEP meeting that they

can say, look here, it’s not just my humble opinion. Here, it says in black and white that

this is the approach that’s best practice for my child. It’s not just my opinion. This is

what the leading voices in the blindness and vision impairment community have to say.

Obviously, this is not going to be an official legal document. It’s not going to be the US

Department of Education’s policy guidance document, but anything that we can do to

help move that process forward is going to ultimately lead to some policy change. That

is to say, as our community comes together, develops a consensus and commits it to

writing, even though it is something that’s voluntary and that’s just developed by our

community, that’s exactly the thing that then we can take to the Department of

Education and say, look, we’ve done all the homework for you. We pulled all the

stakeholders together and we have come to the consensus that absolutely needs to be

enshrined in the law of the land. Here, so take it and run with it.

That’s the kind of work that we’re doing, and look, this is not an AFB project. It’s a field-

wide project, and I know that I and my colleagues at AFB, particularly Dr. Rebecca

Sheffield who I know has been listening in tonight, and my colleague, Sarah Malaier,

who’s been on the phone with me, are excited to do this work all with you.

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With that, I really appreciate you all hanging with us for an extended call, long time.

Folks on the West Coast, let me tell you something, listen, we bend over backwards to

accommodate West Coast people. We stay up nice and late. I’m a back-sliding

Lutheran boy. I’m way past my bedtime right now on the East Coast. So, ladies and

gentlemen, thank you so much.

Leslie, after you dismiss the call, please hang on with Sarah and I in a brief

housekeeping call if you would. With that, ladies and gentlemen, good night.

Operator: Thank you, ladies and gentlemen. That concludes today’s conference.

Thank you for participating. You may now disconnect.