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 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 deaf- blind 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

©2013 The Hadley School for the Blind Page 2 of 45 2013-03-21-Deaf-Blindness 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 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

Next slide please – the goals today, we hope, will be that you will learn some common causes of deaf- blindness; 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 “deaf- blind” 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 deaf- blind.

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 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

©2013 The Hadley School for the Blind Page 5 of 45 2013-03-21-Deaf-Blindness 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, 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

©2013 The Hadley School for the Blind Page 6 of 45 2013-03-21-Deaf-Blindness 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 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 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

©2013 The Hadley School for the Blind Page 8 of 45 2013-03-21-Deaf-Blindness 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].

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 deaf- blind are not listed as deaf-blind as their primary 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%, deaf- blindness 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. 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 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.

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 deaf- blind 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.

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

©2013 The Hadley School for the Blind Page 15 of 45 2013-03-21-Deaf-Blindness language, we use an interpreter or someone else to 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 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

©2013 The Hadley School for the Blind Page 17 of 45 2013-03-21-Deaf-Blindness 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. 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 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

©2013 The Hadley School for the Blind Page 19 of 45 2013-03-21-Deaf-Blindness 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 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 near- sightedness 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 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

©2013 The Hadley School for the Blind Page 21 of 45 2013-03-21-Deaf-Blindness 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 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 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

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 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 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

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 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

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 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

©2013 The Hadley School for the Blind Page 27 of 45 2013-03-21-Deaf-Blindness 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 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,

©2013 The Hadley School for the Blind Page 28 of 45 2013-03-21-Deaf-Blindness 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 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

©2013 The Hadley School for the Blind Page 29 of 45 2013-03-21-Deaf-Blindness 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.

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 multi- modal 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 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

©2013 The Hadley School for the Blind Page 31 of 45 2013-03-21-Deaf-Blindness 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 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 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 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

©2013 The Hadley School for the Blind Page 34 of 45 2013-03-21-Deaf-Blindness 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 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

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; hand- under-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 may help hearing. We all know about hearing aids. There are personal listening systems or personal amplifiers, which brings sound directly to the ears

©2013 The Hadley School for the Blind Page 36 of 45 2013-03-21-Deaf-Blindness 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 scooting noise on the tile floor perhaps; adding

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

©2013 The Hadley School for the Blind Page 38 of 45 2013-03-21-Deaf-Blindness 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

©2013 The Hadley School for the Blind Page 39 of 45 2013-03-21-Deaf-Blindness what you and I perceive as our spoken language and 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 deaf- blind 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

©2013 The Hadley School for the Blind Page 40 of 45 2013-03-21-Deaf-Blindness or children with the kind of hearing aid where it goes 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

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,

©2013 The Hadley School for the Blind Page 42 of 45 2013-03-21-Deaf-Blindness 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 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 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

©2013 The Hadley School for the Blind Page 44 of 45 2013-03-21-Deaf-Blindness 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 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 [email protected] 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 [email protected].

Again, thank you and farewell…