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 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 support until he gets completely connected with the adult programs.
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 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 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 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.