2013-03-21-Deaf-Blindness
Seminars@Hadley
An Overview of Deaf-Blindness
Presented by
Karen Windy, Illinois Project Reach
Carla Beck, Illinois Project Reach
Moderated by
Dawn Turco
March 21, 2013
Dawn Turco
Good morning and welcome to Seminars@Hadley;
I’m Dawn Turco and I will be moderating today’s
seminar, which is entitled An Overview of Deaf
Blindness. We have with us today, two presenters
from Project Reach here in Illinois; first time
presenters to Seminars@Hadley, so a special
welcome to Carla Beck and Karen Windy. In
speaking with both our presenters early on, who are
experienced presenters in live sessions in rooms with
people, this is their first virtual presentation. And
ladies you can just pretend that there’s a warm round
of applause happening now as we bring you on.
It is a very, very full presentation today. I will be using
slides. As the ladies indicate I should move them
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along, so we have a slide presentation and an audio
presentation today. And I am now going to release
the microphone, Carla, if you want to pick it up and do
a little self-introduction and then hand off to Karen –
Karen’s going to get us underway today with the
slides.
Carla Beck
Hello, my name is Carla Beck and I provide technical
assistance for the Illinois Deaf-Blind Project in 60
Illinois counties in Southern Illinois. Thank you.
Karen Windy
Oh and thank you for that applause; I’m sure it was
for Carla. This is Karen Windy and I am also a deafblind specialist for the state of Illinois, and I cover, I
don’t know how many counties, but I cover like above
Carla to most of the Northern part and the Center part
of Illinois, thanks Renee, except for Cook County,
which our other co-worker handles. And then we
have one quarter time person who does a little section
of the Northern part of Illinois as well.
Carla and I have both been doing this for quite a long
time; I think it’s 21 years for me, I’m not sure for
Carla. But we both have a background in vision and
then had special training in deaf-blind. We’re both
working from our homes; we want you to know that,
so that we have tried to make our presentations in the
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quietest part of our home. But I have a dog and so
does Carla, we have phones that we’ve turned off and
hopefully the UPS van won’t come ringing my doorbell
in the middle of this, but hopefully the door will block
that out.
So we apologize for those sounds that we may not be
able to handle. So, let’s get going. Next slide please
– so here we are – Project Reach. We told you we’re
the Illinois deaf-blind services. It is a federal grant
that is applied for through the state board of ed, and
then we have been awarded it at the Phillip Rock
Center. And we provide services throughout the
state. We service children and youth ages birth to 21
who have a combined hearing and vision challenge.
The services are free, which the school districts are
always happy to hear.
And what we do is we go into the school district and
provide technical assistance; we work with babies in
their homes and with the early intervention program.
And when the kids are transitioning; like I have a 22
year old that I’m still involved with right now because
he is in the transition of going from high school to a
junior college, and just needing a little bit of extra
support until he gets completely connected with the
adult programs.
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Next slide please – the goals today, we hope, will be
that you will learn some common causes of deafblindness; you’ll learn vision and hearing concerns
related to deaf-blindness, and the developmental and
educational implications and learn ways to help. Next
slide please – so what does deaf-blind mean? It is a
combined vision and hearing challenge. This means
they cannot rely on their hearing to accommodate for
their vision concerns, and they cannot rely on their
vision to accommodate for their hearing concerns.
And that means, most people when we say “deafblind” they imaging Helen Keller at her greatest level
of vision and hearing loss, which was pretty much no
vision and no hearing as far as we knew. But that is
not the case – we have a lot of children who do have
some vision and do have some hearing, but again,
because of the combination of the two, it makes it
very difficult for them to take up the information that is
in our environment. In Illinois in 2011, there were 446
youth considered to be deaf-blind, and the last
Census of the entire country of zero through death,
there were 5,624 persons that were considered deafblind.
Next – and actually I said back there “in the United
States,” that was just for Illinois. Sorry about that, for
the entire zero through death. So are all people who
are born deaf-blind born deaf-blind, no. There is a
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congenital where both the losses occur at birth from
syndromes, prenatal causes, or something that
happens right as they’re being born, or [apenditions] –
one right after birth, again, or later again syndromes,
accidents, illnesses or medical treatments, or a lot of
them sometimes happen later in life from syndromes,
accidents, aging, illnesses, medical treatments.
We hear about children and adults who have cancer
who have certain treatments, they can sometimes
lose some vision and some hearing. Of course,
traumatic brain injury, those kinds of things can
happen as well. Aging, my grandmother was
considered deaf-blind and when we did that census
back there in 1995 I added her on because she lived
till she was 94 and for the last 20 years of her life she
had a significant vision loss and a significant hearing
loss.
Next slide please – so what is the range of abilities?
It does depend on the age of onset. Like my
grandmother, she got it later, so we very verbal, very
verbal. And she also didn’t learn sign language
because she lost her hearing later. So that kind of
was her ability. She expected you to talk to her the
way she could hear you, or gesture. It depends on
different additional disabilities. A lot of the people
who have a hearing and vision loss also have CP,
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some are very, very involved and some are just mildly
involved.
It also depends on their individual personalities.
Some are very gung ho and go right for it and figure
out what they’re going to do next so that they can
accommodate for this, and some just kind of lay back
and say “Well okay, this is my life now”; so it does
depend on their personality, definitely. People who
are deaf-blind in this world, we know a receptionist,
vending service employees, proof readers, teachers,
college instructors, homemakers and parents, agency
directors, computer programmers. I happen to be
friends with one who is a lawyer and I actually know
one who is an MD, not in psychology – I’m not quite
sure what he teaches or what he does with his MD,
but if he’s doing surgery I do hope that someone is
nearby if he needs some help.
But in all cases the major disability for persons who
are deaf-blind is the challenge of gathering
information. Next slide please – okay, some common
causes of deaf-blindness – and we kind of talked
about that already – is age, [inoxia] which is the lack
of oxygen, Charge Syndrome is a very common
condition that we have or syndromes where we have
children who have a hearing and vision loss, Down
Syndrome, encephalitis, meningitis, prematurity, other
syndromes, traumatic brain injury and Usher
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syndrome. Usher syndrome is a condition that we are
really looking out for because the children are usually
born with a hearing loss ranging from profound to mild
and some of those hearing losses are progressive,
because there are several Usher syndromes – one,
two and three – that are the strong as identified.
But what happens is, depending on which Usher
syndrome you have, they begin to develop retinitis
pigmentosa. And for Usher One we usually can
identify them by early elementary. The youngest one
that we have identified was one year old when we
found out he had the retinitis pigmentosa part of
Usher Syndrome. Others have not been identified
until teen and adult. I had a friend who was an early
interventionist with me, met her at the doctor’s office
when we were taking another child in for vision to find
out she herself had a mild, like a moderate hearing
loss and was seeing the doctor because they
suspected that she had RP. And sure enough, she
found out at the age of 32 that she had Usher
syndrome Two.
So it does really range, and it’s when they find out
that they have this type of condition. Next slide please
– now, the next couple of slides; and for those of you
who can see, there’s a lot of statistic stuff here. So
those who like stats, we will be happy to list
everything off to you on the resources if you would
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like. So we can add that to that if we have enough
people who think they need to know all this. But
basically the first one is when we do our census we
collect information on all the children in the state of
Illinois who have a hearing and vision impairment.
And then we also go by etiology, what caused their
deaf-blindness. Charge syndrome is one of the
highest for hereditary syndromes; and that’s 824, and
Usher syndrome is the second with Down syndrome
right behind it of identified ones. But those who have
other hereditary syndrome disorders that we either
cannot identify or are just so many, because there are
so many, that we just can’t list all of them. That’s
2,375. Next slide, please.
The primary identified etiology for prenatal or
congenital complications was CMV, which is
cytomegalovirus. And then it’s microcephaly,
hydrocephaly and then of course other complications
that we can’t get into is 652. We still have some who
have congenital rubella, which was at 72. But that
obviously, and we hope, has definitely dropped down
since the 60’s when that was happening and there
was a big problem. I’m sorry I’m reading – you know
what Katherine, I will read that a little bit later. But
thank you for that information from [Swancia].
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Oh, sorry about that. I don’t know who told you it was
going to be captioned. Okay. We’ll have to deal with
this. And yes, there will be printed transcript of it
Katherine, okay. I’m not sure why the closed caption
was not in place. Next slide, please. Other postnatal
non-congenital complications include asphyxia,
severe head injury, meningitis, encephalitis and then
others that again there are so many we couldn’t keep
up with at 590.
Next slide, please. And then just complications from
prematurity – 1108, and then others we can’t even
determine if it was congenital, if it was [apenditious]; I
mean what happened here, 1736. And we do have a
national consortium of deaf-blindness and that keeps
all this information together. Now I tried to click on
the website below that starts with www.nationaldb.org
and then documents and products; that’s network to
look at the tables. And if you just put in
www.nationaldb.org you can get to their website and
then go from there, okay.
Next slide, please. I didn’t get my next slide. Thank
you. On an IEP, or on even an IFSP which is our
early intervention form of an IEP, we often list what
the primary condition for this child is also on our
census. And we take that information from the IEP.
Well we find out that most of our kids who are deafblind are not listed as deaf-blind as their primary
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condition. And we kind of stated that before, that
there can be other things.
17% have intellectual disability, visually impaired is 6,
hard of hearing is 13%, other health impaired is 10%;
a lot of our kids with Charge are listed underneath
there. Or the [pedic] impairment is 1%, deafblindness 6%, physical challenges is 70% which I
think gives you a good idea where a lot of our kids
have other issues. And it lists intellectual disability
again; I’m not sure how that happened, but that’s
supposed to be learning disability at 67%, and then
many complex medical needs 40%.
Again some of our kids with Charge or the trisomy
children are often under the complex or the other
health impaired. Okay, any questions so far? We’ll
take the mic off and see if anyone as any questions.
Dawn Turco
Alright folks if you have a question the microphone is
open.
Caller
I’m just wondering if compared to what, in accordance
with what we know now, the range of diseases and
whatnot, has there ever been any research done as to
just what kind of disease it was that brought on Helen
Keller’s fever that lead to her deaf-blindness.
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Karen Windy
It was my understanding that she had meningitis.
That was what I always was told, that she had
meningitis and that is what caused her hearing and
vision. And that, I mean I’ve had multiple kids with
that condition and have had hearing and vision losses
as a result.
Don
Hi, my name is Don. I’m just trying to find out, I am
totally blind and experiencing a hearing loss. How
would you know if you were a good candidate for a
Cochlear implant?
Karen Windy
Well Don, I’m sorry to hear that. Something that you
really need to find a good facility. I don’t know where
you’re from. Where are you from?
Don
I am in Baltimore, Maryland.
Karen Windy
The best thing, in my opinion for you, is to check with
your audiologist, number one. And if this is a
progressive hearing loss they may consider looking at
you now. Typically the Cochlear implant is one of the
last options if they think they can maintain hearing for
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you with a hearing aid. But if you think you’re going to
lose the hearing completely, I would be monitoring.
And if you’re cochlea is healthy, that is the main thing,
if you have a healthy cochlea, and if you don’t have a
healthy cochlea the other thing they can do is what
they call a bone conduction, which that’s what they do
again, with a lot of our children with Charge because
their cochlea and their ear formations are not usually
healthy or normal. They do it by conduction on the
bone. And that has come a long way as well.
Caller
It’s my understanding that Medicare will pay for one
Cochlear implant for sighted people but for blind
people does Medicare pay for two Cochlear implants
if that’s needed.
Karen Windy
You know, I don’t know that. I didn’t even know they
paid for one because they don’t pay for hearing aids,
which drives me nuts, but they’ll pay for Viagra. But
sorry – that’s my big fight. “Why won’t you pay for
hearing aids for quality of life but you’ll pay for that
Viagra.” But that, I don’t know; that’s a good question
to ask and I think that we need to find out.
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Dawn Turco
I’ll interject, if you don’t mind, a question that’s come
in in text. Basically asking about services to children,
and Renee is interested in the frequency of deaf-blind
students becoming proficient in braille.
Karen Windy
That’s a good question, Renee. For me, of the
several children I have actually most of them that
were completely deaf-blind at birth. I don’t have a lot
of experience. I have one young girl who was deafblind from birth and she is doing fabulous. Some of
our children have some vision and hearing loss, some
have progressive vision and hearing loss; they have, I
have some very proficient readers and then I have
some who do not. But again a lot of that is because
of physical limitations.
I have one student who has diabetes, so the tips of
his fingers, even though he’s a good braille reader
now, we’re worried because we’re not sure how he’s
going to progress with this if his diabetes cannot be
kept under control or if he just starts to get more
sensitive fingertips for whatever reason. They try not
to test him there, obviously, for his blood sugar; they
kind of do it over to the side more. But that’s what I
know. Carla, you might have something to say about
this as well. Back to you, Carla.
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Carla Beck
Yes, I’ve had several deaf-blind students also that
have become proficient in braille. Also have been
introduced to tactile sign as well with the severe
hearing impairment and visual impairment, so we
have a combination of a lot of abilities and disabilities,
and yeah, that’s what I know. Thanks.
Karen Windy
Maybe we have time for one more question if there is
one, otherwise we’ll move on. Actually I see Renee
had another question too. With so many primary
disabilities how difficult is it for a child to receive
services. That’s why we’re here. I mean it really is.
That’s why we do have a technical assistance
program in place. We try and work directly with the
children who are deaf-blind and give them the tools
that maybe they don’t have because their specialty is
just hearing or their specialty is just vision.
If we know that they have, I’m going to kind of answer
your question Carla at the same time, if they have a
vision impairment and we know that early on, we do a
lot of the same things we would do with a visually
impaired child. We prepare them with pre-braille
activities and go into the braille. The vision teacher is
usually the braille teacher. If the child has sign
language, we use an interpreter or someone else to
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help them learn the braille or tactile signing or
whatever else they need.
And something else we’re really trying to push in the
state of Illinois is something called an intervener. So
it’s a person who doesn’t just sign to a person as an
interpreter, but who also can intervene, who can help
them grasp their environment and grasp what’s going
on around them to help them better understand the
braille and help them understand what else is going
on in the classroom that maybe the teacher or just the
vision teacher, just a hearing teacher or just an aide
really cannot do.
And you know what, I don’t know much Renee, I
guess…I’m kind of reading what you’re saying – US
has little in jumbo braille – you’re right, they have very
little in jumbo braille. Carla, if you have anything else
to offer please do at this point. We lost you Carla.
Carla Beck
Thank you. Pre-braille skills are taught at an early
age and pre-literacy skills are an incentive nationwide,
so even parents can help and facilitate that as well.
Thank you.
Karen Windy
Okay, and Patti, that’s a good idea. We will list of all –
and actually if you go to our website I think you have
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access to all of our deaf-blind contact centers as well
there, and that is listed on our resource list, but we
can update that as well. Thank you for adding that.
Okay, Carla now is going to talk to you about the
types of visual impairments that might be associated
with deaf-blind.
Carla Beck
Okay, next slide please – types of visual impairments.
You’ve heard of acuity loss. Visual field loss, ocular
motor problems and cortical visual impairments. Next
slide please, thank you. Acuity loss is referred to as
blurriness of vision; refers to the sharpness of your
vision, and we look at that acuity of vision after best
correction. It may be measured as 20/20, and legal
blindness begins at 20/200. In a functional sense
however, blindness can be characterized as the loss
of any useful vision even though shades of light and
dark may still be seen. And we know that many
medical causes lead to acuity loss as well.
Next slide please – there are different types of visual
field loss. There is peripheral field loss, central field
loss and scattered scotomas, which we often refer to
as islands of vision. Next slide please – with the
peripheral field loss, one is unable to see what is
coming from the sides, above and below. We often
hear about the term tunnel vision, and with the tunnel
vision, walking safely is very concerning for instance.
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And if one has a hearing loss, it would be difficult to
know if something is coming in that field of vision.
An example perhaps of peripheral field loss with
hearing loss is seen with the Usher syndrome that
Karen talked about, where one is born with hearing
loss and the RP, retinitis pigmentosa is diagnosed,
and the narrowing of vision occurs. So then we’re left
with central vision at that point. Next slide, central
field loss refers to the inability to see items directly in
front, and only see things to the side. So the face
recognition and reading is challenging. If there’s a
hearing loss involved, one may not realize that
someone is in front of you talking or signing.
One example would be if you heard the term optic
atrophy, which is a disease with progressive difficulty
for the optic nerve to send messages to the brain.
And it can be either peripheral loss involved or central
field loss. Next slide , scattered scotomas are
patches in all fields of vision which are affected. As
you might hear as caused by diabetes. If there’s a
hearing loss one may have an even greater chance of
missing something in one’s field.
Next slide, thank you. Ocular motor problems consist
of having difficulty with coordinated movements of the
eyes, where we’re looking at fixation, following and
scanning. Strabismus is one type of ocular motor
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problem. It can be consistent or constant or
intermittent or variable. Constant strabismus from an
early age may lead to amblyopia which is considered
lazy eye. And we think about nystagmus when we
look at ocular motor problems as well; this is the
involuntary shaking of the eyes, which that can be
horizontal or vertical nystagmus.
Also with ocular motor problems you might hear of
tropias or phorias, those are also included in this
category of problems. Next slide, cortical visual
impairment is the inability of the brain to process
visual information. We often realize that there are
normal eye structures here, eye movements are
smooth and parents and professionals really feel the
child can see. The effects of the cortical visual
impairment can vary from specific visual inabilities,
unable to identify people by looking at their faces,
perhaps the child or adult turns a head away while
reaching. And then we have overall visual
impairments of acuity or field can be affected.
Other characteristics of cortical visual impairment,
fixation may be spontaneous and short, one may look
momentarily at something and then look away to the
side and down, so there’s variable visual inabilities.
Next slide please, thank you. What are the functional
implications of eye conditions – well eye conditions
can vary from absolutely no impact on vision to no
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light perception. There are different diseases that can
have the same functional impact, which can also
affect acuity and field and so on.
A person can also have more than one condition, and
more than one functional implication. An example of
a functional implication for albinism let’s say, would be
blurred vision, might be characteristic, possible nearsightedness or far-sightedness; perhaps a normal
visual field or a central field loss, light sensitivity,
difficulty with glare, those are some considerations
with albinism.
Next slide, types of hearing loss. One would be a
conductive or sensory neural hearing loss with
amplification in the better ear, also an auditory
processing disorder or being unable to use hearing
efficiently for education, as determined by the
educational team. And a functional assessment
would be done here to determine that type of loss.
Next slide, let’s look at conductive versus sensory
neural hearing loss.
With the conductive hearing loss medical intervention
is sometimes possible and amplification will often
improve hearing. Sensory neural hearing loss
presents itself with nerve damage that is permanent
and amplification will not improve clarity or sharpness.
Next slide please, to get an idea of what a person
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might hear with different losses, starting with let’s look
at t normal hearing range. We would listen to a
sentence “Freddy thought he should find a whistle.” A
mild loss might be heard as “Freddy thoug e ould ind
a whitle.”
A moderate loss would sound like “Ready ou e ould I
a ittle.” With a profound loss one would hear intensity
of sounds as combinations of loud soft sounds. Next
slide please. What are other types of hearing loss
besides the two we just talked about, the condutive
and sensory neural? One would be auditory
neuropathy and secondly auditory processing
disorders. Next slide, please. So what is auditory
neuropathy?
It can be simply explained as let’s thing about
listening to some music on the CD player, but there’s
a frayed wire somewhere between the radio and the
speaker system. The sound is entering the player but
is not able to get through the wire and into the
speaker in the correct way. So now if we replace
some words – radio, wire and speaker – in this phrase
with the words – cochlea, nerve and brain – this is
what we’re looking at with auditory neuropathy.
There is a frayed nerve somewhere between the
cochlea and the brain; the sound is entering the
cochlea but is not able to get through the nerve and
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into the brain in the correct way. That’s a simple
explanation and I hope that is descriptive enough for
you for auditory neuropathy. Next slide, auditory
processing disorder. Let’s look at listening to that CD
player again, but you have a distorted speaker. When
we substitute those three words again, this is what we
can compare. The sound is entering the cochlea and
is able to get through the nerve and into the brain in
the correct way, but the brain cannot properly take in
that information which leads to poor output.
Next slide, please. Auditory processing disorder is
like you might imagine watching TV with the volume
turned way down and noise in the background as loud
or louder. Also imagine trying to watch a foreign
language movie without the subtitles. It’s easy to see
how a person becomes distracted, tired, upset,
disruptive, irritable. And misdiagnosis can also occur.
One might think the person is just not paying
attention, and it’s frustrating for everyone involved.
Next slide – shall we take a five minute break and
answer questions and – let’s hand the mic over to
anyone who has questions. Thank you.
Caller
I’m really interested in the intervener aspect. I have a
lot of students from Canada, and through the CNIB it
sounds like they have a pretty strong intervener
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program. I’m totally blind and I have a mild to
moderate hearing loss and my mom is almost
completely deaf, and I may be that way sometime,
and I guess I’m just interested in knowing, and
probably you’ll address this, but what intervener type
programs will be available for us as we get older.
Karen Windy
That’s a very good question, and we don’t know
unfortunately right now where this is going to take –
I’m actually going to be at a stakeholders meeting
tomorrow and one of the things we’re going to talk
about is the intervener. Now, move to Texas, if you
have a child and intervener programs are just
assumed, you know; they use interveners in the state
of Texas for children. I do not know if they use them
as much for adults. I know that we have a young girl,
not young anymore because she is in her 20’s, who
has interveners, but up to this point her parents have
paid for those interveners to be involved with her
because she is deaf-blind.
It is something that I think we need to really start
paying attention to. And Deanna, I’m going to answer
your question right away too about tactile signing.
There is some online information and I’m making a
note here to try and find that and we will add that to
our resource list as well. Because if someone does
have an interpreter or sighting capabilities there’s a
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real nice website that you can go on to enhance to go
into tactile signing. I also do trainings on tactile
signing at some of the community colleges in the
state of Illinois, but that may not help you so much.
Carla Beck
This is Carla and I might add that yes we also are
learning more about the intervener model in Illinois,
and how the interveners might play a key role in
educational programming. So that’s where we’re at
right now, looking at the educational programming.
Thank you.
Karen Windy
Anybody else?
Caller
What are some resources to get started on sign
language? I have a neural sensory loss, severe, and
I’m totally blind and I was just wondering what
resources there are for starting the sign language.
Karen Windy
Depending on what state you are, like the Department
of Rehab Services, they should be able to help you. In
Illinois we have independent living centers; it’s a
resource where people can go and say “Hey I need to
learn some sign language.” And I know sign
language is taught at these centers and usually
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they’re free of charge for family members or for the
person themselves.
So I think, and like I said, I’m not sure what state you
belong to, if you just want to learn some signs just
overall there are online programs as well that can
offer you – if you look, just type in “sign language” and
it comes up if you want to do some searching. It may
take a while to do some searching if you are computer
savvy to find some different resources that way too,
but I would ask whoever is your support – and like
Lisa wrote here I can connect.
I wonder if that might give you some help too. It talks
about iconnect – it’s icanconnect.org and it’s a
website and it’s supposed to help people who are
deaf-blind with their communication efforts. So it
might be another way to look at some ideas that
would be there.
Dawn Turco
Maybe we should move on with the presentation, you
did a great job catching up on those text messages
and getting that website into the audio, so great for
that. So let’s move on.
Karen Windy
Next – oh, you’re there. Good job. Anyway, so what
is daily life like for people who are deaf-blind? They
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have challenges with communication. They have the
challenges of getting around – this is daily life.
Challenges to learn new things; challenges in daily
living and of course, these challenges are so often
compounded with additional disabilities. Next slide,
please.
And there are going to be effects on their
development, social-emotional, cognitive, motor and
communication and language. Next slide, please.
With the effects on the social-emotional, it’s like the
bonding and the attachment. Those of you who are
just visually impaired, since I hear a lot of you are and
you kind of understand how it’s hard to make that
connection sometimes with a person’s face. People
who are sighted rely so much on looking at your face
and picking up those little queues.
I always knew when my mother was unhappy from
across the room if I said something because that look
came at me. And she didn’t have to say a word. But
it’s that bonding attachment, the mothers look for that
first look from their child when they’re looking at their
face when they’re babies. And that is affected. We
have to find ways and encourage people to continue
to work with them.
Trusting and mistrust – if they’re walking with you and
they’re falling or if they just don’t feel there is a
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comfort level with someone, it’s going to be more
difficult for someone who does have vision. And
independence, being able to just go and do
something on their own. They do have to rely more
on someone else. And just a self-confidence for
themselves, “I am a good person. I can handle this.
I’m here.” I can see how that would be more difficult
thing for them to get compared to someone who has
vision.
Next slide, please. Effects on the cognitive. Cause
and effect – all these things that visually or auditorally
we pick up we’re not going to pick up cause and effect
as easily; object permanence. We talk about the
understanding entire process of an activity. I always
talk to my parents about please do not become the
good little fairy where everything just appears and
then it just goes away when they don’t want it
anymore. They need to learn the whole process of
where something comes from, what it does and then
where it goes back to.
Cooking, hamburgers don’t just show up on a plate
you know. Cooking and all those activities, children
see, they see that the bottle or the milk container
comes out of the refrigerator, it’s poured into a bottle
and then the bottle is put on a stove to warm up or
nuked in the microwave and it’s given to them; those
things are not there. General constricts
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classifications, they’re not going to just automatically
know plants versus animals versus insects, the type
of insects. And then they have to get, we have to
balance that information from excessive verbalism
because sometimes we describe so much instead of
giving them more other information; tactile
information, more concrete information.
Next slide, please. Effects on the motor – there are
different timelines for children who are deaf-blind and
then ever just children who are visually impaired. We
see a greater delay in their mobility milestones than
for their stationary milestones. Because obviously,
being motivated to move is decreased. I always talk
to my parents about giving them some idea, we kind
of find ways to give them the motivation to move
ahead and understand that if they get that far, they
might just find something else more rewarding for
them. But it’s hard, especially at the beginning.
Next slide, please. Effects on the communication and
language – they may have a need for a tactile life
experience so that language changes to meaning.
They may have delayed speech. They may use
augmentative and alternative communication
systems. Augmentative and alternative
communication systems are like we have; switches
that give voice output. We have larger
communication boards that have pictures that either
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they put their finger on the picture, it gives you a voice
output, or it’s like a communication book you go to
McDonald’s with and they point to the fries that they
want and the cheeseburger or whatever to help them
get to communicate with that person because they
can’t do it themselves.
Or even if they know sign language, the person that
they’re trying to communicate to may not. A lot of
times we have to accommodate for that visual and
make it more tactile. You know, give them objects
instead of just a picture if they can’t see the picture or
can’t communicate with the picture. Next slide,
please. So what can we do to help? We’re going to
make accommodations for communication, make the
accommodations for vision and make the
accommodations for hearing however we can.
Next slide, please. Communication without complete
hearing and vision – they may have some residual
vision and hearing, and I think Carla talked to you
about how they might have the patch or the scattered
scotomas. So they may use some of that when
they’re communicating to see a person sign, but at
the same time, we have to make sure that we are
providing them sign language where they can see it or
a picture where they can see it or whatever it is that
they need.
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I have a child I just did an evaluation on, a high
schooler the other day, and he was saying he wasn’t
understanding. He said “Everyone is using different
sign language.” Well we found out that he has
retinitis pigmentosa from Usher syndrome and we
realized that his field of vision, his central field had
decreased even more and he probably was not
seeing a complete sign. So people have learned that
they have to start signing in a box, a very small box
right in front so that he can see everything that they’re
signing, the complete sign and not a part of a sign.
And again, we might use different techniques in
different settings and situations. We might use multimodal or total communications, sometimes it talks,
sometimes it’s an FM system, sometimes it’s braille; it
depends on that system. We have a lot of kids who
have one system for receptive information, and
another one for expressive. I have a child who can
pretty much take in sign language, or even a spoken
language with the hearing aids on and then reinforced
with sign language, but they express by using an
augmentative device because they can’t sign very
well and their signing is inhibited by Cerebral Palsy.
And then we have the tactile communication, either
signing into their hands or giving them objects; and
I’m going to talk about that in a couple of minutes as
well to get more information. Next slide – possible
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strategies. They watch your body language, talked to
you about that; touch queues, object queues, tangible
symbols, signs, speech, print and braille. Next slide,
please.
Whatever you’re using, the critical receptive message
had to be “Hello I’m here,” “My name is,” “This is what
we’re doing,” “This is the activity,” “You’re going to be
touching this or I’m going to be touching you here to
do this,” “We’re going to move here or you’re going to
move there,” “It’s time to finish,” and “Goodbye.” Next
slide please. Object cues there’s something that you
give them to tell them what the activity is going to be
about, what they can expect.
A spoon if you’re going to eat; a piece of thread is
sometimes, like a rope is used for PE; touch queues
maybe if the person is totally deaf-blind and cannot,
you don’t have time to sign in their hand; a tug under
the arm is “Okay let’s get up”; a little push on the
shoulder – and I’m talking a gentle, very nice push is
saying “Okay we’ve got to go forward.” Next slide,
please.
Scripting is another way we can get them to
understand something in a routine that we’re always
doing. The script is good because then everyone
tries to do it the same way, it’s repetitive and done the
same way every day with a child or an adult so they
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understand “Okay, this is what’s happening; this is
what I can expect next.” And then as they get used to
it we stop at one part and see if they’ll initiate the next
movement, and then that’s kind of their little sign to us
“Okay I want to get going, let’s do the next thing
here.” That’s my sign they’re telling you “Let’s go
baby.”
Next slide, please. Okay, you know what, Carla is
going to finish up and then we’re going to end up with
any questions at that point, okay. If that’s alright with
everyone. Carla?
Carla Beck
Thank you, Karen. What are the accommodations for
vision? Well, we encourage people to use the
remaining vision they have. That may entail bringing
the environment to the individual to explore its
characteristics, or provide sighted assistance to take
a deaf-blind person to the missing information. We
want to ensure safe travel and consider those safe
travel experiences. And as appropriate, replace
visual information with auditory and/or tactile
information.
Next slide – what might help people see better. Well
glasses and contacts are prescribed, as we know.
Surgery is considered necessary. Correct lighting
and reducing glare. Define persons who have
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extreme light sensitivity; we need to consider that
lighting and glare. In one example, with [anoridious]
for instance, one may have a restricted field, need
sunglasses, and may have blurred or variable vision,
so we need to consider for that correct lighting and
reducing glare in that case, with [anoridia] and other
visual impairments. That was just one example.
Special devices – there are magnifiers for close range
and distance viewing. We have different telescopic
aids, we can even use those in the classroom to look
at visuals at a distance, blackboards and other
visuals. ccTVs are close circuit TVs, which have
enlargement features to read regular print. And
positioning is always considered for optimal visual
performance. Preferential seating in the classroom
for instance, we have to be aware of student
placement for best visual performance.
Our interventions with children and adults perhaps
may be more accommodating on either side,
depending on that visual loss. Or we may need to be
centrally positioned for optimal viewing. Next slide –
how can we adapt materials to help people use vision
better? Well large print, looking at size, distance; we
need to manipulate visuals perhaps to accommodate
that maximum visual performance. We need to look
at contrast and color, increase contrast of color such
as black on white, whit on black, yellow on red, red on
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white. And minimize clutter and to simply show
displays; that sometimes enhances vision.
Next slide – orientation and mobility. There are all
possible methods of communication to be considered.
With respect to a student and an instructor for
instance, we need to consider possibly written cards
for communication; gestures; actions, such as guiding
or pointing; writing out messages on the hand or a
braille device; recorded messages, signals and so on.
Then those preferred methods are always chosen
then depending on the individual need.
Next slide – so when considering people using
wheelchairs or walkers, canes or adapted mobility
devices can be added to walkers and wheelchairs.
Persons who do not propel their own chairs can be
taught to feel for landmarks to know where they are.
Travel training is another term we use, this may be
warranted to structure a sequence of steps with
prompts, let’s say from point A to B in a school
setting, or outside of a school setting with sighted
assistance.
Next slide – replacing vision with hearing and touch.
One can interpret the visual environment with hand
sign or voicing, depending on the individual need.
And we need to remember touch and object queues –
object queues are usually whole objects, child specific
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and relatable to the individual. Karen mentioned
different touch queues; another example would be
tapping behind the elbow to illicit reaching responses.
And then, as Karen mentioned, objects that are used
in routines or transitioning activities to continue with a
flow of a schedule during the day.
We can replace pictures with tangible systems.
Tangible systems usually represent items previously
used, let’s say as object queues. An example would
be a piece of chain to indicate a swing on a
playground, so that transitional item is used. Perhaps
even a smooth card of a bright color, let’s say yellow,
would represent work time; that kind of thing. And
hand-under-hand exploration sometimes works best.
I know we all are familiar with hand-over-hand; handunder-hand is really used in the majority of situations
and is probably the most skillful way of touching a
child or adult who is deaf-blind. It’s a gentle touch
that establishes a mutual topic. It’s non-controlling; it
creates a shared experience, and the sighted guide
can pull back away and eventually the student or the
adult is completely exploring on his or her own.
Next slide, please. Accommodations for hearing –
just as with visual impairment, we need to help people
use the remaining hearing they have. Perhaps we
need to replace auditory information with the visual
and/or tactile information. Next slide – things that
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may help hearing. We all know about hearing aids.
There are personal listening systems or personal
amplifiers, which brings sound directly to the ears
without increasing background noise. These can be
used with hearing aids, equipped with what’s called “t
coil,” or without aids by wearing earbuds or
headphones.
And there are a variety of types of personal listening
systems. You may have heard of FM systems.
These are personal FMs that are like mini-radio
stations operating on special frequencies. And it
consists of a transmitter microphone used by the
speaker, or a teacher, a lecturer. And the receiver is
used by the listener. So the receiver transmits a
sound to the ears, or if wearing a hearing aid or an
implant, transmits directly to the aid or the implant.
Cochlear implant really helps people with severe to
total hearing loss in both ears, and who do not get
benefit from hearing aids. We did touch on that just a
little bit, which it is a small electronic device that helps
make the sound, and the implant does the job of the
damaged or absent nerve cells. Thank you, next slide.
Auditory accommodations - deaf-blind persons you
may need to get real close to what is important to
listen to; turn off unneeded sound if that’s possible to
do so; add acoustic features to the room such as
tennis balls on chair feet; that’s to help reduce the
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scooting noise on the tile floor perhaps; adding
carpets, curtains and acoustic tile. And as always,
use prescribed amplification.
Next slide – our guidelines for working and playing
with deaf-blind people – always use courtesy of
course and mutual respect. We need to guide the
activity using that mutual touch of an object. And that
guiding is what we would consider the equivalent of
pointing. Communication, which does not occur
incidentally, we may need to initiate physical contact,
as we mentioned earlier. And reposition ourselves at
the eye level to the deaf-blind person. That might
mean squatting down to a small child and getting to
that eye level. And interpreting using objects and
tactile experiences as conversational topics, and we
need to adjust the pace of our conversation and
consider the extent of the hearing and vision loss, the
rate of processing information and motor response
time.
Next slide – in summary, we need to know the levels
of vision and hearing, encourage the use of
prescribed vision and hearing accommodations,
always be sure to give those critical messages from
start to finish, try alternative communication if typical
vision or hearing systems is not enough, and that wait
time is very essential for information to get in and
waiting for a response to get out, allow sufficient time
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for response to all communication. And that’s the
conclusion and thank you very much for being with us
today; do we have any further questions? I’ll hand the
mic to you.
Dawn Turco
The microphone is open for just a few moments if
anyone has a question. I know Karen’s been doing a
great job in the text box.
Volley Nelson
Yeah, my name is [Volley] Nelson. I have a friend
who’s deaf-blind, her name is Katie, she lives in
Jacksonville, Florida. She just received cochlea
implants so she’s just now getting into the world of
hearing. And she is able to, you’ve got to speak real
slow to her for her to understand you. Why would you
have to speak real slow to someone that’s just getting
into the world of hearing that has cochlea implants?
Karen Windy
Well the difference between a cochlea implant and a
hearing aid for one thing is the cochlea implant is
radio waves. So it actually comes in not as just voice
like you’re hearing over your microphone from me.
And it takes a while for them to get it adjusted just
right as well, so her brain is still deciphering those
radio waves and those sounds. She may come into
what you and I perceive as our spoken language and
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it is, you do have to talk slower so that she can keep
up with you, and she’s probably kind of watching your
lips as well – no she can’t that’s right; you said she’s
visually impaired.
That makes it even harder, because a lot of times
they do accommodate by watching your lips,
especially at the beginning when they get a cochlea
implant, so it is a more difficulty job for her to get this
under control. They will probably be, she’ll probably
be going to several visits with the cochlea implant to
continue to get it a point where spoken language can
be more of a normal range and normal rate than
others.
Lisa, I don’t – the SSPs you’re asking about are there
any funding sources to help people who are deafblind pay for the service. I do know that our DRS in
Illinois can help with some of that. Again, I don’t know
about a lot of the other states at this point. And of
course with sequestration in place, God only knows
what we’re going to have in the next couple of months
or year.
Caller
Can I ask a question about; it’s kind of a hearing aid
question. Have you had any experience with people
or children with the kind of hearing aid where it goes
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all the way into the ear and a doctor puts it in like, the
only one I can think of right now is [Lyric].
Karen Windy
I don’t think I have one child who has that type of
hearing aid. I know of them, but I don’t think I have
one child who has that. Carla, do you?
Carla Beck
No, I don’t have that experience with that. I do not.
I’m sorry.
Dawn Turco
Maybe time for one more question and then we’ll start
closing out and saying our goodbyes and running the
survey.
Hannah Tyler
Yes hello, this is Hannah Tyler from Connecticut. And
I would like to make a comment. I have Usher
syndrome too and when I was born I was hard of
hearing and I didn’t have this problem with vision until
I was about 32, after my first child was delivered and
it seemed like it compounded it. I’ve been a graphic
designer, I was fortunate enough to go to college and
do graphic design. But I wanted to make a comment
that it’s also helpful, especially if you have children, to
have a street sign installed.
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I managed to get my town to get a street sign
because I do walk with a dog every morning and
evening, and that would be helpful because we have
a very busy street; especially if you have children.
They might not hear the car coming or going. So
that’s my suggestion. But thank you, it was very
informative.
Karen Windy
That’s a very good point about the street signs,
indicating that someone is deaf-blind. And we do do
that in Illinois. And like you said, that’s a really good
example. I had a young boy who’s been hit by a car
three times who had Usher syndrome One and one of
them was that he was actually at the stop, at a corner,
the woman, a mother, was in a car stopped at the
stop sign, she saw him look both ways, so she
assumed he saw her and she went forward and he
went forward. Fortunately he’s still alive and still
moving just fine, but thank you, that’s a good
reminder.
Dawn Turco
Ladies, unfortunately we’ve come to the end of our
time today. We’ve had a great group of participants,
both active with microphones and texting today, and
Melanie with a new job at CNIB found your
presentation very helpful, as I am sure the others.
And again, like I started out, if you were in the room
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with us seeing us, you’d see happy faces and smiling
faces and hearing some applause probably right
about now. I’m going to hand the microphone back to
you for a farewell, and then I’ll close us out.
Cristy
It’s been a good seminar; I enjoyed it as always. This
is Cristy.
Ellen Carpenter
This is Ellen Carpenter from Great Falls, Montana,
and this has indeed been a very enjoyable seminar.
We’ve really enjoyed it.
Louis
This is Louis from Brazil, I would like to know rapidly,
quickly if you use physical therapy processes in
training children with orientation and mobility. Thank
you for the interesting…
Dawn Turco
Carla or Karen, I don’t know if you have an answer for
that last question snuck in there under the wire, and
then feel free to say goodbye and I’ll close us out.
Karen Windy
I started texting it, but since you said we could – yes,
we do use physical therapy. Very often our physical
therapists are involved with our students when we do
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an orientation mobility; even our occupational
therapists. Actually Carla was involved in a really cool
program where we worked with a young man who had
limited, many things that were limited and he did a
great, they did a great job with him learning
orientation and mobility with the help of the other
therapist.
Carla Beck
Yes, this is Carla. Yes, that program that Karen was
referring to was what we did consider the travel
training. This young man was in a wheelchair and he
has light perception and is a braille reader and very
limited hearing. So we did that travel training
program, which was very helpful for him in familiar
and unfamiliar environments taking those steps with
prompts to get from A to B that I had talked about
earlier. So anyone else, thank you very much. This
was very enjoyable.
Dawn Turco
I want to once again say thank you to both Carla and
Karen for an absolutely fabulous seminar today. I
very much enjoyed having you on a topic we hadn’t
covered yet with our Seminars@Hadley. We will be
posting the recording for this webinar on the past
seminars page on our website at Hadley.edu. We
will post the Power Point presentation; that was the
lengthiest one I’ve ever run with presenters. We will
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post whatever resource list the ladies turn over to us.
And finally, we will post the transcript for this webinar
as well. And I will get that shipped off to our provider
as quickly as possible, to try and turn that around for
us very quickly.
It’s been a wonderful presentation. I look forward, I
think I’ll be seeing you ladies in April at another
Chicago in person conference. And I want to thank
you again in person. Meanwhile, thank you to all the
participants and if you have feedback related to this
seminar, or other topics that you’d like to see us
cover, there is a feedback@hadley.edu mailbox you
can drop that into. And if you have any further
questions for the ladies I can forward those on for you
as well. Again, that was feedback@hadley.edu.
Again, thank you and farewell…
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