Unedited Session Transcript

Impacting Post-school Outcomes for Young Adults who are Deaf Blind

Dorothy Walt & Shawn Barnard

4/10/03

>>: Just for your information, we will be using the VCR to show some videotape. So for those of you who have vision like mine, you might want to move closer. It is really to give you a visual view. It is not about interpreting what's being said as much. There is an interview with a young woman at the end of it. I'm just trying to figure out.

> (Inaudible) we will pass out evaluation forms. Some of you may have gone to other workshops and filled out evaluation forms. This will be the same thing. Give us your feedback. When you're done, I will collect them all. Okay? That's all. Thank you.

>>: I would like to welcome all of you to our workshop today called Impact Outcomes for Youth Deaf-blind. I didn't say the words right. I forgot the name of the title already. [Laughter.] Okay, it is Impact in Post-school Outcomes for Youth or Deaf-Blind. How many of you here were at the presentation two years ago? Hand raised. No one was at the two-years-ago conference all-day workshop on deaf-blind? No one? No? Did anyone here have any experience working with deaf-blind people? Okay. Let me ask you: Anyone not have any experience working with deaf-blind people? Okay. Thank you. How many of you here are educators? We have counselors? Service providers? Okay. We have no teachers or educators here, right? Okay. Thank you. Okay, that's good. Thank you. School counselor.

I'm going to start with now, I'm going to talk about transition planning. Before we start, we would like to ask all of you to please follow some deaf-blind culture rules. First of all, please raise your hand and wait to be called on when you have a question to ask. My interpreter here will tell me if someone is raising their hand and then I will ask you to go ahead. I don't think we have enough microphones to pass around, so the interpreters will voice the question and then we will go ahead and answer, respond to your question, rather than pass around microphones. Also, please identify yourself by name before you speak, so that the interpreters can say who is talking. And also, please go a little bit slower at a pace so that we can all follow each other with a variety of communications that we have in this room.

We have done a wonderful presentation today. I have two other people who will be presenting with me. We have a little bit of everything. We have statistics, videotape, interactive participation. We have a little bit of an overview of deaf-blindness and lots and lots of resources. There's a table in the back of the room over there with many handouts and resources. Please go over there and help yourself during break time or at the end of the three-hours presentation. I also have some simulators on the table over here that simulates four or five different vision problems. If you are curious to know what it looks like if you have retinitis pigmentosa or macular degeneration or glaucoma or detached retina, to try these simulators on during break time if you're interested in seeing. It is not perfect, but it will give you some general idea what it looks like when you have some of those vision impairments. We have two wonderful presenters today. I'm not counting myself, of course. But the other two presenters we have are Shawn Bernard from NTAC and Kathee from the Deaf-Blind Children Project. I will ask both of them to come up and to explain a little bit about their program and who they are so you know what they look like before we will start our presentation. So Shawn and Kathee, will you please come.

BARNARD : I will just hold these. My name is Shawn Bernard. I work for NTAC, which is a short version of the National Technical Assistance Consortium for children and youth who are deaf-blind. We're a federally funded project, a five-year grant that works primarily with the Deaf-Blind Project, who Kathee is representing, the Washington state Deaf-Blind Project. And we deliver technical assistance in a variety of ways based on the project's needs, to improve services for children who are deaf-blind in the states. And I think that is it in a nutshell. I just wanted to say a really quick story, that I first came to this conference I believe it's been four years ago, 1999, and I was a grad student assistant for the rehabilitation program at Western Oregon University in Monmouth. And I slept in the van when-through the whole conference. And now it's kind of funny to be here as a presenter four years later. So I'm really excited. But-and the reason that we slept in the van is because we-my husband and I were both students in the program, and we decided that we needed to get sushi in Seattle. That was our goal. The money we saved, we went and bought sushi. So just a quick story. Thank you for having us. Kathee.

>>: I'm Kathee Keller-Scoggin. I work for the Washington State Services for Children With Deaf-blindness, which is part of an umbrella project called Washington Sensory Disability Services, and it is a state-wide project providing technical assistance to all school districts, families who have children who are at risk for deaf-blindness or who are deaf-blind from birth to 21 years old. So once the student graduates or ages out of high school, that is when our project stops providing services. There are some brochures on the back table in case you want to pick those up, and some business cards for those of you who might have connection with schools and are wondering how to get some help through that. That's what we do. And we work with Shawn and Dorothy. Thanks.

>>: Thank you. Thank you Kathee and Shawn. And, of course, I would like to introduce myself to some of you who don't know me. I'm Dorothy Walt. I'm a regional representative for the Helen Keller National Center, the northwest region, which is region ten. I have responsibility for Alaska, Washington, Oregon, and Idaho. I too have business cards on the table back there, and there are a few pamphlets back there too that explain my agency. We are a national rehabilitation agency that is federally funded. We have a training center in New York where we provide evaluation and training for youths and adults who are deaf-blind. And we also have a wide variety of other programs too. The brochure back on the table will explain a lot of the other programs. I work very closely with Kathee Keller and her program and also Shawn

BARNARD and her program and I am very happy that the two of them agreed to co present with me today on this topic. They are wonderful presenters and they have a lot of information to share. And you will be very, very surprised at some of the statistics we are going to be sharing with you today. So I'm going to ask Shawn to start out the presentation with an eye-opener that will make you stand up and take notice, and you should. And then we will proceed with the rest of the workshop to give you information and also have you use your thinking cap in trying to have some solutions to problems and possibly be creative in maybe trying to resolve some of the issues related to transition. So I'm going to give this microphone to Shawn. Before Shawn comes up here, you maybe want to put the overhead for the outline first? Are you finished? Okay, so I'm turning it over to you. I'm going to go off to one side and-

BARNARD : I'm not sure how this will work. Can I move with this? I can't, can I? Kathee, could you just push the arrow and see if it'll go? The arrow to your right.

BARNARD : Okay. What would you say if someone predicted the following about your life? You will not attend postsecondary education. You will experience unemployment or underemployment. You will not live independently. Your experience of community life will be limited. And you will have few close relationships during your lifetime. Exactly. I mean, probably what was going through your mind. We all could say we would not be happy with that. So keep those things in mind as we go through the rest of our presentation.

>>: I feel like I need four hands. I would like to start out by giving all of you just a brief overview of deaf-blindness. Some of you here don't have a lot of information and other people here already know a lot about deaf-blind. So this will be a very short overview, but it is important for you to have that information before we continue with the presentation today. I would like to talk about-can we have the overhead with the four kinds of deaf-blindness. Before I start with that, you know the cause of deaf-blindness is from many different causes. It could be from disorders, could be infectious disease, syndromes, or any other kinds of conditions, including genetics. There are many different kinds of deaf-blindness and it is important for all of you who are working with youth in transition to understand the background, the etiology of the deaf-blindness, the communication preference. Very important to know all of that to understand their future, their prognosis of their hearing and vision loss. Some hearing and vision loss is stable. They don't get worse over a period of a lifetime. Some vision and healing losses are progressive and as the hearing and vision loss progresses, then new skills and new ways of doing things need to be learned by the individual who has the hearing and vision loss. So as a professional, it is very important for all of you to know all of the characteristics of the individual who is deaf-blind. And I would like to talk about now the four kinds of deaf-blindness.

I don't usually-I don't like to label people in categories, but for the purpose of this discussion, I think it is important for you to understand it because when individuals have a specific characteristic, then they fit in a specific group of people that have similar types of backgrounds sometimes, and sometimes similar communication. The first group we will talk about are those who are born deaf and later become blind. Before I go into that, I want you all to be aware that when we use the word deaf-blind, we are talking about a wide variety of hearing loss, from hard of hearing to totally deaf. From low vision to totally blind. There are wide variations between the two hearing and vision losses depending on the individual, and sometimes they have additional disabilities. They may have CP. So (inaudible). Or they may have cognitive impairment also. So all of these factors need to be taken into consideration. The first group, people who are born deaf and later become blind, one of the most common causes of that group are the people with Usher's Syndrome type I. With that, they have retinitis pigmentosa which is a vision impairment. Retinitis pigmentosa, which is RP for being short, is a progressive visual loss. It affects your field of vision. And for some people, affects the (inaudible) vision. And for some people, the progression is fast. For others, it is slow. No two people are alike.

Your responsibility in working with individuals who have Usher's Syndrome is to be aware of the variation of the degree of loss for the vision. Most of the time the first communication preferences for that group of people are sign language, ASL or PSE or whatever. As their vision becomes worse, they have to switch to tactile sign language because they are no longer able to see the sign language visually. So that may be a factor to consider in maybe trying to encourage the young person to learn tactile sign language for the future. Sometimes they will. Sometimes they won't. Also, they will probably want to learn braille too when they can no longer read print. The second group of people are those who are born blind and later become deaf. Sometimes people who are born blind is a result of (inaudible) or when a baby is born premature they don't get enough oxygen and it affects their vision and sometimes they become blind. Later on some of these people may lose their hearing for maybe a reason may be age-related hearing loss or maybe they develop an ear infection and lose their hearing. Many different reasons.

These people will probably want to use an FM system, hearing aids, cochlear implants, and if they want to learn sign language, most often they will learn finger spelling and use that tactile. They may have more difficult time learning ASL because they can't see it. The third group of people are those who are born deaf-blind. These people sometimes have been using a wide variety of communication depending on the individual, but oftentimes if they have cognitive impairment, they will be using object symbols with sign language. They may also use maybe other types of communication that is best suited for their needs. And they will probably try to use braille or use touch a lot. And the fourth group are people who are labeled deaf-blind. The largest group of people in that category are the senior citizens who have age-related hearing and vision loss. Those are the biggest group in that category. But you will have people who develop a hearing and vision problem later on maybe due to an accident or an injury or a trauma or some kind of disease is possible too. And with those people, they may have a wide variety of communication system too because their first language most likely will be English. They have learned English and they have learned the spoken speech before they lost their hearing and vision. I also listed some of the common causes of vision impairment at the lower part of that overhead to let you know some of the vision problems.

What are the factors to be considered in transition planning? Communication needs: The student, if you work with a student age 14 or 16, I don't know which your school program or if you are a counselor which age, it is different for each state. 16 But some people start at age 14 and some start at age 16. And some wait until after they graduate high school. But it is important for transition planning because there are the factors. If they are using sign language, need to consider whether they will need to use tactile sign language soon or very close to the near future. If maybe a cochlear implant will help them in their future. Maybe they need to learn braille. How is their English skills? Do they need to improve their English skills for the future? FM system and other assistive listening devices, can they benefit from those? Sign language skills. Do they need to improve that? Environment to know people who are deaf-blind requires different environment. For example, dark background for sign language, contrasts, signs, hand signs, slower pace, and things like that. Personal adjustments: Coping skills.

It is very important to teach the youths how to deal with their vision and hearing loss, learning coping skills for that. Support groups are very important for them to get peer support, listen to each other's problems, problem-solve. Mentors. Adult mentors are very important for them to see how successful adults who are deaf-blind in their life and their employment. Important for them to get a lot of information about the world around them so that they can make decisions about them self and help with their transition planning. And also, sometimes they may need professional therapy in dealing with their losses. In training, independent living skills. And any other skill they need to build upon. And vocational skills. All of those are important to get before and during transition for their future. Explorations of jobs and career, adaptive technology. Work experience programs. Mentors. Training. Job placement and development services.

I know in Washington state we just recently the director of DVR is setting up a mentor program for adults who are interested in deaf-blind adults who are interested in mentoring. And the director himself will become a mentor himself to one or two deaf-blind persons who are interested in learning about how working with the VR system, very, very interesting. And that is good experience for deaf-blind people youth and adults who are thinking about careers in VR or service providers system. I wanted to ask people to hold your questions until after the specific topic presentation because we're going to have different topics throughout the three hours. And they be when we are finished with a specific topic we will ask if there are any questions and then if there are no questions we'll turn it over to the next presenter. I'm about finished for this part. Is there any questions right now? And if not, I'm going to turn it over to Shawn and Kathee. Okay thank you. Kathee and Shawn. Oh, wait a minute. No, I forgot we have a videotape. [Laughter.]. No, it is funny. When you have presenters who are in different locations, you are trying to plan your presentation, and it is piece meal and our thought we had it all together and I had forgotten about the videotape.

Kathee brought a videotape to show all of you some different deaf-blind people to give you some idea what-how they function. It is very short, like three minutes, four minutes. Actually, this video is of some adult deaf-blind people and for those of you who do work with deaf-blind adults, these might be the people you're most used to working with. So we wanted to start that out because we will show you another videotape of some of the students who our project serves who are deaf-blind buff additional handicapping conditions which present a whole set of difficulties for transitioning out of public schooling to adult living. So this is just very brief and actually I know where I want to stop it so I'm going to stop-. I want to be as independent as I can be and the lighthouse has everything that I want. Basically what the lighthouse did is put in my head the idea that I could- Okay is so those are the people that we're used to.

> We had several special students out at the farm over the years. None of them have been deaf and blind the way Andre is but Andre I measure differently than I do the rest. He makes little steps. When he first came out, we worked on just getting him to pick up a bucket. He's up to half of a bucket now that he can carry down here or that he will carry down. A full bucket he's not able to do that just yet. When we first had Andre out here we thought we would have him start feeding animals, but we took three steps backward to get him to be willing to carry a bucket from where we store the feed down at the hay farm. This was a first step. This was a plan we had to start with that didn't necessarily adapt real well to Andre when we were working with him and adapting it for him. It was one of those team meetings that we tried something and then we changed it after we had been into it.

BARNARD : I'm going to change my presentation to the overheads and they are ready to go. Okay. Kathee and I are going to be going back and forth a little bit so I thought if I just switched modalities to my overheads it might go a little bit smoother. It is not uncommon for young adults who are deaf-blind to find themselves in a positions that they are living, working, and socializing in environments that have nothing to do with what they are interested in or have anything to do with their preferences. And I'm going to introduce a survey. It was a national-I'm glowing to jump ahead a little bit. A national transition survey and out of 97 participants that the-the participants were parents. Out of 97 parents, they reported that their children's preferences and 40 percent of their children's preferences and interests were not accounted for during their transition planning. That's a lot of people, a lot of young adults who did not have that even considered.

So the way we want to start is the current outlook of transition for students who are deaf-blind and I kind of thought it was like a Seattle forecast. It is mostly cloudy with breaks of sunshine. And we're hoping that we can make that sunshine a little bit better, more frequent for students. I referred to the study. It is the national transition follow-up study of youth identified as deaf-blind. And it was from parents' perspectives. And the study was done for students who exited the educational system in 1996. The study was conducted eight months after they had graduated. And approximately 206 students exited the school system in 1996 and 97 responded to this survey. So it is about a 42 percent rate, which is pretty good. But it indicates that young adults may not be receiving appropriate or adequate transition services, and that kind of sends us red flags for those of us who serve these young adults and really want them to have the opportunities to achieve outcomes of their preferences and interests.

One of the two main categories we wanted to start with were communication and mobility. The reason is they are going to have a huge impact on how students are served. And this study found that there were two categories. There are youth who do not communicate with a formal language system and who do not walk independently. And that's kind of that second category-or the second group that Kathee was showing you on the videotape. And then the second category is youth who use formal language and walk independently. So services are going to be very different for those two groups of people. Communication. As you can see, 53 percent of the students who graduated in this study did not use a formal communication system. Non symbolic, facial gestures, vocalizations, behavior. A very small percentage actually used sign language as their primary language and most of the students who did have-that used the sign language, the 18 percent, were either a culturally deaf or they used sign language as an augmentative measure to support their communication. So that really shows us a picture of the population. So some of those implications, we can all agree to the premise that individuals need and have a right to communicate. I don't think anyone would argue that communication is part of our daily life and a very strong value for all of us. And we can all agree that it is imperative for these young adults to leave school with a formal communication system. So in saying that, consider that 50 percent of these students of 97 students, left the educational system without a formal communication system in place. That's really devastating.

AUDIENCE: Half.

> That's because of the extra disabilities.

> Or why?

BARNARD : It could be. Yes. That's my next point. I'll go on and then see if I address that. If I don't, let me know. The next is mobility. 57 percent of the individuals could walk independently, and 43 percent rely on some type of assistance for mobility. So that gets to the implications. A large percentage of young adults who are deaf-blind have additional disabilities. And as Dorothy had indicated, those additional disabilities can range from severe to, you know, not as affecting functional daily life as much. And that's separate from the sensory disability of being deaf and blind. So the limited mobility can channel these youths' use of language systems. We see that in a lot of the children that we serve in schools. And ironically, one of the services that could help these students is O and M services. I mean, we think of O and M as being the cane and people knowing where they are going but it is much more than that. It is when students have some of those motor impairments, it is getting them to be able to use some type of communication system. And Kathee is going to elaborate more on that. But for students with severe disabilities, O and M services are not routinely provided. And that is something that we should consider. I like to say it in these terms: If you can't move, you can't communicate, so we really need to step back and look at some of the services we provide these students early on and realize that in the whole scope of things, communication is going to impact them significantly in the transitioning years and later in life. Transitioning years and later in life. So Kathee is going to show you a videotape regarding communication and some of the different communication needs of students. Who are deaf-blind.

> We're going to get your snack. Christopher, which one? Which one?

> Ketchup, please. Do you want a drink? No? You have to tell me no. Thank you. So far we have winter break coming and Christmas coming. What else, Colin?

> Winter coming.

> Right. What day is that?

> December 21.

> Right, on December 21 is winter.

> Okay, are you ready? Okay, so what I would like is I would like you to-I want you to talk about what things you really enjoy and what things you like to do.

> Okay. All right. Normally if I'm home, (inaudible) I can go upstairs and play Pacman. Sometimes (inaudible) I like to do (inaudible). I don't know. I like to give mom a bad time. MOM: What about watching videos? KID: Yeah, watching videos. WOMAN: What kind of videos? KID: Christmas cartoons, different Disney cartoons, Muppet cartoons. It is kind of hard to remember them all. Some (inaudible). I think. [Laughter.] Maybe the dude playing (inaudible) is different. This year I've been making a book of kind of a chocolate book and finding lots of different stickers of chocolate stuff, like ice cream bars. And we found some Bite Bars and I have written down different ones that I want to look for and I wrote down to add to my birthday list. WOMAN: So do you love to eat chocolate? What are places-what places do you like to go and visit? KID: I like to go to different stores. This is my (inaudible) it is like a computer. So right now I'm on number one. That's where I can hear everything. Number two and number three are a little bit confusing because 1 is for like if you're in a car or in a plane or stuff like that, you press that. And it blocks the extra noise. And same thing with the other one. It is for like if you're in a restaurant or a movie theater or something, you press that and it blocks the extra noise. T is the telephone spot. And the other one is a little bit confusing too. [Laughter.]. But (inaudible). WOMAN: How long have you had that? KID: Just before blind school.

>>: I'll just finish up a few things and then we'll stop. So one of the things in that videotape you could see the variety of students with both vision and hearing loss but other disabilities. And even though some of them are young, what we want to challenge you to think about is what kinds of recommendations based on your experiences would you be making to schools about the kinds of things we should be working on. And communication, we wanted to show you all the varieties of communication, and that one of the things we experience the most is that people start to think in school that there is one communication system. It can be different for each of the students but the idea that one student would receive information in one way and put it out and deliver it in a different way is just almost foreign to people in schools. And what we try to do is say to them-well, I want to ask you. Do you have only one form of communication and all of you would answer of course not. You type, you write, you talk, some of you sign. We all gesture. Especially when we're talking to our children. Get in that room and clean it up. [Laughter.].

So the reality is we have a variety of ways to communicate. We communicate with just our faces. So why would we expect that there's only one form of communication? So one of the things I've been challenged in the schools a lot is especially working with kids who are deaf-blind and have cerebral palsy. Is they say we're not going to do sign language with them because they can't use their hands. And I say, but, they have enough vision and they are receiving sign language visually. They may have to output with something else, objects, or pictures, or whatever else, but they actually can do it. So one thing we've been really emphasizing is the issue of communication. So Mark Campano who works in our project with me, one of the first things we do is when we go in, we're constantly looking at communication systems. And I just want to add something to what Shawn was talking about and what you were asking about the issue of communication. Is what happens is, especially deaf-blind kids with other disabilities, is somebody starts out and says well we'll do sign language and they are five years old and someone is doing sign language with them. After six months or a year someone says it is not working we better switch over to pictures. Maybe the child sees well enough for pictures. Then they go on to pictures.

Then after about six months, a year, year and a half they decide that isn't working so then they go on to the next thing and then they say, well, this kid really can't learn sign language, he really can't learn language at all. Okay? And so then somebody else tries it. Then the child transitions to middle school and the middle school people say, hey, let's try sign language. And so they all start sign language again. And they go for six months, a year, a year and a half, and say oh, it is not working. So you can see the cycle that occurs. And that's one of the reasons we really believe that over fifty percent of the students who are either graduating from high school or are aging out of the program at 22 do not have a consistent communication system because no one sticks with it long enough. And no one gives a couple options at the same time. They think that's going to be too hard for the student. And so I'm constantly amazed at the level of student who is graduating from high school who really is much more capable in communication than what they are presently doing, because those of us who work in schools starting from when the kids are little just are not patient and consistent enough with the communication system.

And we also discourage the families. Instead of saying to the family: You know, we're not seeing results yet but after all, when you think of your own baby, how many years do you talk to your child before a child who has regular hearing starts talking back? About two years. We didn't even try two years. And so, you know, we just have to keep reminding them that this is-this is not something that's quick. So communication is crucial. And then I would like to talk a little bit about the connection with the mobility that Shawn was talking about. Kris continue, the young woman that you saw at the end, you may have seen somebody holding her arm when she was standing up explaining her hearing aid control system. She has had strokes and so she is not steady on her feet. She uses a cane. At one time she could not walk at all. And so the reality is for her she did have hearing and vision when she was born but she lost it very early due to tumors. So she's in a very different situation.

And right now we're looking at putting together a videotape of young and middle aged deaf-blind adults to, number one, show a vision to school personnel who don't know deaf-blind people and to families who don't know adult deaf-blind people so that we start having a vision that these deaf-blind children with additional disabilities actually are capable and can do something. Because part of it is our expectations are too low. And so we're working on trying to pull something like that together so that people can actually manage looking at, oh, wow, you know, this child could do something. And that is the real challenge for this group. And the majority of the students we work with in our project and who age out of school or graduate and end up in the VR system are not people who are just deaf-blind and nothing else. They usually have at least one other additional disability.

So those are the two areas that we feel are crucial. And I was telling Shawn about a student I worked with in Arizona and J O N A H was 16 years old and for the first time he actually started to walk. We had had him in prone standard for years and couldn't walk and couldn't walk. Totally blind. Did not have a hearing loss at that time. At 16, we finally got him on crutches and he would just sort of guide down the wall of the hall and one of the things we assessed was after six months of walking on crutches, we did a language reassessment and he had grown two years in communication in six months. And it is because of movement. And so we really encourage people, if you're working with somebody who is not doing much movement and you say oh, they have got cerebral palsy they can't move. Yes, they can. They can get on a floor. They can roll around in many cases. They can move. And the more movement that occurs, the more communication occurs. And so we want to emphasize no matter at what level you're working with deaf-blind adults or will be, is that you really find out is that person moving? And especially for the people with cerebral palsy or other orthopedic problems. So with that we're going to kind of stop and come back to more information from the study and we'll take a break unless there's a question. Yes there's a question.

> I have one.

AUDIENCE: Could you identify yourself and then.

AUDIENCE: I'm Theresa Johnson from Alabama. I'm just not sure that I'm understanding fully the correlation. I think I heard you say something about the O and M training. And then-and I understand what you're saying about the movement and communication. But are you saying that we should maybe incorporate more communication training, kind of incorporate that into the O and M training?

> Yes. Just as I would be incorporating movement and O and M into communication time. It might be something as simple if you're working on directions with a student that you're working on the communication, and maybe there will be a tactile sign for right and left or there will be some kind of texture or object that means right or left or up or down or behind. If you're working on that. If you're doing the mobility, if you can infuse the communication, whether it is before the person's going to do the movement or after it, to talk through: Well, what did you do? I think that's a huge piece of it. And even for Jonah, we did a lot of O and M stuff where we would tell him something about his learning a memory of where he's going in space, but we would talk about it first, and then we would shut up. Because one of the things we've been taught is you don't talk at the same time that you're trying to get somebody to do it. It just doesn't work. It is like talk, and then shut up. You know? [Laughter.] And that's hard for some of us who are talkers, is just to zip it. But that's very, very important. Did that clarify that? Or are you still-

AUDIENCE: No, I think it is wonderful. I guess my concern is that most O and M instructors are not trained in the communication and vice versa.

> And one of the things that we-Dorothy's going to actually be talking about is the issue of teaming and of cross-training. That if I have got the background in communication and you have got the background in O and M then we should be talking to each other and we should be sharing our skill and I could be saying at this point I think you could be doing this and this in communication with John. And then you could be saying to me, you know, Kathee, if you're working on this communication, then you could do this with the movement. And that kind of talking back and forth, whether it is through an e-mail discussion, a phone call, or actually being together. And sometimes being together is the best of both worlds at one time, so that I can see what's happening and what kinds of things would you want to communicate in the first place, given what you've set up for O and M. Yes?

AUDIENCE: My name is Bob (inaudible) and I'm from the office of deaf and hard of hearing services here in Washington. We know that a lot of family environments when parents or family members sign has a great impact on deaf children's development of language and use in school. So what they learn at school they also can bring back to the home and that helps them tremendously. So do you have any findings about communication specifically and the combination with mobility? So that we can work with families in their environments? Do you have more information about that?

Kathee: The statistics that we have in the handout was done through a survey. So that tells us what the problem is. As far as the solution goes, one of the things we do is with the family is we find-we try to help them identify what the communication-the way their child is communicating, so the parent will say: My child doesn't communicate at home. My deaf-blind child doesn't communicate. And I'll be watching and the baby starts screaming bloody murder, and it is a whole different cry than I heard five minutes earlier. And the mom goes: Oh, my gosh. I forgot. It is time to feed him. And I say: Oh, so he did communicate to you? Oh, that's communication? So some of it is helping parents identify that they do have a child who communicates. And helping them be able to then share with people this is how my child communicates. It doesn't mean that that's how we want that child to communicate when they are 21 years old. And that's the problem. Is sometimes wherever that child gets stuck, they are stuck, and nobody tries to move the student further. Whether it is into sign language, tactile signing, use of object cues, whatever it is.

And that is part of our job, is to say I'll say sometimes: You know what that might turn into? We could actually do this and let's-so when he does that, I'm going to go over and I'm going to put my hand under his hand and bring it up to his mouth. Okay? And I'm not expecting him to understand that that means I want to eat. But if I do that every time I get a scream that I know means I'm hungry, it is amazing how quickly with even a child with very significant additional disabilities will actually start bringing their hand up to their mouth in a modified sign for eat. And I think that's-so those are some of the techniques we're using for families as well as school people and birth to three providers. It is not just the families. And we're trying to get that word out, of a way to approach.

BARNARD : I just wanted to add another example. Of how the O and M and the communication pairs together. We're currently working with a young student a four year old boy who has multiple disabilities in addition to his deaf-blindness. And his team has been trying to get him to let them know preferences or when he is finished with something, when he wants an activity to stop. And part of their goal was to have him put a Q in a finish box. And they have been working on this for months. And we just recently did a training with an O and M specialist that came in and she looked at the positioning of the child and said, you know, it is really unrealistic to think that he will be able to do that in the position that you have him in. And so really looking at his whole day, the team realized that they have him in so many different positions within a very short period of time, that they are continuously repositioning him, transitioning him to other positions, that his communication development was really being sacrificed as a result of that and some of the positions that they had him in was really preventing him from succeeding.

And so part of that modification was that they have him in a new position for longer lengths of time, so he can actually instead of concentrating on holding his head up in the position that he was in, he could concentrate on the communication piece. And so that's an example of where two heads are almost better than one because no one really realized that until the O and M person came in. So I hope that's a good example as well. Any more questions before we take a quick coffee break? Okay. We'll see you guys back I believe in 15 minutes.

>>: We have glasses over there if you want to try them, help yourself. We're going to start in about one minute since we're running a little bit behind.

BARNARD : We'll go ahead and start. Research shows that poorly or absent transition planning results in secondary school experiences that lacks the effective educational practices recognized to promote employment. So again, referring back to the survey, 50 percent of the youth did not receive a formal written individualized transition plan. And 33 percent of this group only received a written plan the last year of their high school experience. So if in compliance with I D E A these students should have had a minimum of seven years to include transition plans with appropriate goals and objectives. And we can all agree that the outcomes of seven years of transition planning would be much better than what we're demonstrating currently. So I'm going to turn this over to Kathee and she's going to talk a little more about transition planning and including that in the I A P.

So one of the things that we want to remind people about now is that at the age of 14 or younger if determined appropriate, and most of the interpretation right now is suggesting that the way you would include a child under 14 would be if there is a high likelihood that that student's going to drop out of school, or if there's a reason why that student is going to need a lot more time to make the transition, a lot more training and a lot more attention to it. Those are the major two reasons why you might start even younger than 14. But the law requires that we have to start at 14 to talk about a transition service statement in the IEP. And what I'm seeing some of the school teams try to do is that they are trying to get people from voc rehab or from DD to attend the IEP conferences and the transition plan meeting and what we're hearing from VR is that we have such high case numbers we can't even get involved until the last year or two before the child graduates. So the challenge is how is the school district going to keep them more involved. So recently what we did with one of the VR counselors who really would like to come but just doesn't see a way to do it, we videotaped the student doing some activities that were leading what we thought to some graduation plans, some postsecondary plans, and then we would just insert some little statements in there, and it was a seven-minute videotape. And he called us up after he saw it and he said, okay, I'll be at the next one.

So we hooked him, because he liked the kid. And this kid was very likeable. And we knew he was. So I mean we cheated. [Laughter.] But any way you can do it. So those are some things that we're trying some different kinds of things with vocational rehab and DDD to get them more involved earlier with the student. At the age of 16, you have to have a lot of transition services in place. You have to have a coordinated plan. So one of the elements-the elements that need to be included in that is what kind of postsecondary education? And what we've seen in the past is that somebody would write "biology class" or, you know, "math class," something like that. It is like: For what purpose? What is that leading to? What in that transition plan suggested that a biology class was a good idea? "Well, that's the only period that was open.". But it didn't relate to the student's likes and dislikes, preferences, needs, which all have to be addressed. And for some of the deaf-blind students we work with, I can say to somebody like Kristin, the young woman at the end of the tape: What do you like? What do you like to do? And I can get an answer. With someone like Andre from the farm I can't say: What do you like to do? I have to have found that out over years of experience with him. Somebody has to have that experience: Mom, dad, brothers and sisters, teachers, pair educators, whoever.

So one of the things we have to include is we have to identify what the needs are of the student. And then also what their preferences and what their interests are. What do they like to do? Do they like to be outside? Andre does. Andre has to be moving. If Andre is supposed to be sitting some place, all you're going to see him do pretty much is rock. So for him, getting up and moving is huge. And someone shared with me that there's a young man back in Pennsylvania that said the team came up with the fact that he is always so interested in smells. So he would come up and a woman would have perfume on and the first thing the student would do is get real close and smell around the hair, which is not too socially acceptable at that age. But any time there were smells, the kid was more alert. Someone had an idea what if we put him to work on a farm? There are lots of smells on a farm. And actually, he does great on a farm because he is really getting a lot of sensory feeding from that. But that's what we're talking about. Trying to find out what the interests are and how important it is. And my experience especially when both parents are working, sometimes it is the brothers and sisters commit aunts and uncles who know more about what the child likes or doesn't like because they spend more time with the child. Brothers and sisters are phenomenal sources of information.

On transition, one of the things-another thing that you'll see on a transition plan or should see on a transition plan is something that talks about anticipated post-school outcomes. And in that, there's usually a box where they check you know the student's planning on college or vocational training or not determined. And this is all in one of the handouts somewhere. And then this is an example-whoops. Upside down. This is student A. So I'm going to take this off of an actual transition plan and this is what happened. This student was 20 years old. He had one more year in high school. And this is what was on his transition plan. They had no idea what he was going to do after he left high school. They had no idea look there was going to be any employment. And they had no idea where he was going to live. And he was 20 years old. There was no discussion. And this is not unusual. This is very typical of deaf-blind students especially those with additional disabilities. This is student B who is 17, and the plan was college, and employment wasn't determined yet. She just knew that she wanted to go to college and she had thought about maybe she wanted to go into law and then education. But that's real typical for a 17 year old not to know.

I remember my daughter coming home and saying I'm going to join the army. And six months later she was going to join the Peace Corps. Those don't sound like those go together real well, but that's where she was. That's real typical of kids. Then the community living, she was going to be living at home. She didn't see that as a forever but she also saw that she wouldn't be able to live anywhere else until she was done with college. So this is the unusual. The first one is the usual. Where everything is said not determined not determined not determined. And what we would sometimes hear from families is well we don't know what-we don't want to pigeon hole our child. We don't know what he's going to be. And my response to that is, we can set something right now and you can change it. You can change continue six months. You can change it in a year. You can change it in two weeks. But at least let's get something going of what we want to do. We also included a sample of one of those, the needed transition services and some ideas of what one looked like. But you have to address instruction, education, vocational education, community experience, post school living, daily living skills.

Related services, and vocational assessment. Those have to be addressed in the transition plan also. So what I want to say to you about the transition plan is that we-it is crucial for those of you who are working in the school system for you to know what is necessary, but for those of you who may be on the adult service end, we need-the schools need help. They-you know, they are busy just trying to get through the courses and get through the day. They don't have the sense of what the student needs when he's 21, 23, 26 years old. And one of the things Kristin said, I just pulled that little piece off but we did about an hour interview with her and her mother. And one of the things Kristin-I asked Kristin what do you do with your friends. And she said to me what friends? I don't have any. I had two when I was in school. But I haven't seen them since I graduated. And so that's, you know, and the mom says here's Kristin without a job right now. Yes she's now taking classes at the local community college. She was taking an exercise class. The one you saw. But the reality "she is not a happy person because she has no social relationship. And her mom said you know I think I did a real disservice. They wanted to start a signing club in high school and they talked about doing it and they did but I, you know, I didn't care that she participated, but now I'm starting to see where I just-I was so busy thinking about what she was going to do in college before she had the second stroke and now that she's had the second stroke, a college education where they thought they were going, is not where it is going to be for her.

So it is very, very interesting to hear, you know, hindsight is of course 20-20 always. But I think that's important too. And the research from Washington, the post-school outcomes on Washington students in the year 2001, is there was a much lower rate of college attendance even though there was a much higher identification on transition plans that kids were going to go to college. And so they were looking at the economics of Washington but they are also thinking that, you know, everybody's trying to build up the idea of we need to work on academics, academic, academics, by gosh we've got to do academics, and then people aren't gets as many jobs. And they do realize that it is also the economy but they think it is more than the economy. So it is a real struggle to go back and forth. But to try to find out most important thing is if you're not working off the students' likes and dislikes and what their needs are and what the family sees, then you've got a plan that's not going to go anywhere. It is like me deciding that we're going to teach sign language to Dorothy at school, but her parents aren't going to do signing at home because they are going to just talk to her. Well, you've got two different ways, and it is not going to be helpful to Dorothy at all. And this is actually taken off of Oregon, and we just recently started using this form when we're sitting in the middle of transition plans, our Deaf-Blind Project and identifying who the agency and contact is, what's the anticipated service, what are the lengths of service, and Oregon added the last column and that has been the most telling column to parents. And that is the anticipated last date for the services to be offered.

Most parents do not understand that VR is an eligibility issue. They don't have just an automatic right to it. They have to become eligible for it. Most families don't understand that. Also the Deaf-Blind Project that has been serving them since their child was born, we stop at their 22nd birthday. So when we write the date that we stop providing services the parents start getting panicked so we've started doing this very early so families are starting to get the idea, okay, we've got six more years, the Deaf-Blind Project will be there but then they won't. But who could possibly be there in six more years? Especially for the families with kids with deaf-blindness and other disabilities. They have got to find support systems. Okay.

BARNARD : Okay next we're going to move on to secondary vocational preparation and again I'm going to be referring back to the survey. 64 percent of 93 youth in this study did not receive any vocational programming. Or they participated in nonfunctional simulated work experiences in the classroom. Only 29 percent of the 97 youth reported receiving VR services and/or consultation while still in school. And I think Kathee addressed that, that VR counselors have a high caseload. Now we're seeing teachers with a high caseload. There are a lot of contributing factors but my reaction to this is: Wow. What are we doing? Trying to coordinate the services at the transition can be very complicated. So- So one thing we know is research says that students who actually succeed in obtaining and maintaining paid work in community settings receive ongoing opportunities for training in the community while their-throughout their high school experience or even earlier than high school. And many of them have better luck if they have obtained some type of employment before exiting high school.

The majority of the youth in this study did not receive any of these experiences. One thing that is a little bit different with deaf-blind individuals is most of the students, as you can see, age out of school, which that goes back to the seven years of transition planning. Most of these kids, if you would start transition planning at age 14, you have them until they are 21 or 22. They are aging out of school, compared to 8 percent of youth with other disabilities. 47 percent received diplomas compared to 59 percent of other youth with disabilities. And only three percent drop out compared to 33 percent of youth with other disabilities. Again, this kind of just reiterates what I just said that you know most of them remain in school until they are no longer entitled. So now what? You get them out of school, they exit the school system. So what do we do now? Kathee talked about postsecondary education. These statistics are pretty grim. Out of 97 students, 8 participated in a voc rehab program such as HKNC. And five community college, two vocational or technical college, and one a four year college.

And one thing I think we need to keep in mind is this doesn't even tell us how many of these students actually graduated from those programs. It just said that they had entered into those programs and how many students even applied to those programs and did not get accepted for various reasons, their math levels were not up to par or you know, various issues. So it is not a surprising statistic to see that 82 percent of these individuals are unemployed. That's speaks for itself. Some of the implications, a fourth of the parents reported their child has underdeveloped job skills. That coincides with vocational prepare. The parents supported lack of job supports-jobs and supports for their child to engage in employment. And the majority of the young adults represented were not working or were underemployed. Kathee also talked about living situations. 61 percent of these youth live with their parents. 34 percent in residential care. And 5 percent live independently. And what's really interesting about that is that parents reported their child living at home was their preference. So that leads us to questions of is it because the parents don't have the confidence that their children have not received the skills to live independently? Are these students being given the opportunity to try it out? Do they know what their options are? That again goes back to looking at self determination for these students. And is it their preference to remain at home?

So the implications for young adults who are deaf blind, that they need to have the realization that they are capable and creative individuals and we should always be sending this message to them, and that they are responsible for and capable of achieving the goals. And setting personal goals defines the level of control that these individuals want to have over their life. Do they want to be in charge of their finances? Are they okay with their parents to do that for them? Do they want to live with their parents or do they want to try living in another situation? As we go through this, we're continuously thinking about self-determination. Implications for parents. Interesting enough, despite the statistics being very cloudy as we said with the weather report, the parents reported feeling very or somewhat satisfied with the services their child-or children are receiving. So that tells me that we really need to raise parents expectations for their own children and Kathee really hit that on the head. A lot of these parents do not know what's available to their child and have no vision of what a successful adult deaf-blind individual looks like or what they do or what, you know, what opportunities are available to them.

So and it is a clear example that we need to, as professionals who work with individuals who are deaf-blind raise our expectations of them and promote that to both parents and to the individuals themselves. And so we're going to start sending these individuals a new message hopefully. We know that with effective and individualized support and planning, that there is evidence that young adults who are deaf-blind can and will participate in postsecondary education environments, experience successful employment of their own choosing. Live in a setting of their choice. Contribute to their community. And engage in meaningful relationships throughout their life. So that's our goal. That's the message we should be sending and hopefully-there are two more transition studies that are coming out, one is being done currently. There's an example of the study back on the table. One is being analyzed from the year 2000. The results are very similar to this. So even though this study in particular can't be generalized to all students, it is starting to show a trend as we continue to do more surveys. So thank you and I'm going to-oh, question thank you.

> My name is Daisy Cartwright and I'm from Alaska. I was wondering, in terms of independent living, do you count people with roommates or with partners or do you only focus on people who live totally alone? What do you define as independence?

BARNARD : That's a really good question. The study didn't really clarify that and I didn't clarify it with the person who collected the results, but my assumption would be that he was considering independent living as being with roommates and not in a residential environment. Yes, out of the parents' home. Another question?

AUDIENCE: I wondered about the employment statistic of 18 percent. Did you have a breakdown on that, of how much of that was community-based and-or sheltered workshop? And was it a prevailing wage or was it a living wage? By that I mean it takes like twelve dollars an hour to live in Seattle at a minimum. Whereas, you could live in some other cities in Washington state for nine or ten dollars an hour.

BARNARD : The 18 percent was considered competitive employment. They did break it down in some other areas that I didn't include on the graph, but it did not address if it was, you know, what the wage was, if it was comparable to nondisabled peers, and that's a really good question. Some of these questions, if you have ideas, please write them down for me because I can convey them as we continue to do these surveys, we're collaborating with the person who does them and I can convey those interests. We have two more questions.

AUDIENCE: My name is Kim. I work with services for the blind in Spokane. And I work with adults in some of the transition students. And this is just an observation and also what I have heard. Students that I get are not necessarily deaf, but they are blind. And they might know JAWS and they might know braille, but O and M, man, and especially if they have another secondary disability like you were talking about. I am thinking about one person in particular that when he was younger, it was never considered to attempt to teach him O and M because they didn't think that he could do it. So now I'm at his last IEP and I wonder what is he going to do? And we're now starting to teach him this because of course he can learn this. But in my Eastern Washington area, what I'm hearing from the schools is that there aren't enough O and M instructors. And I haven't heard you say that here, and that's why I'm having to provide those services as inner adults. And I wonder, is that-that's my observation that that's part of the reason why children aren't getting them.

BARNARD : You're absolutely right.

AUDIENCE: They are not ready for independent living.

BARNARD : We agree with you a hundred percent. The reality is that is exactly right. It is not just O and M instructors. It is teachers that are visually impaired there's a huge shortage of them nationwide. The reality is that is very accurate. The other problem is if the student has any additional disability or any behavior, what we see is people make a judgment that we better not teach them any O and M because you put a cane in his hand, he may hurt somebody or he won't know what to do. That's the stuff you get all the time. So you're exactly right.

BARNARD : Last question and then I'm going to turn it over to Dorothy and she's going to wrap up on some research based practices. WOMAN: I was.

AUDIENCE: I was hearing that part of the issue is looking at the stats is that parents need to raise the bar and part of it is they don't know what their options are. They don't know what services are available. They don't know. Thinking back, you know, I have a daughter who is 28 with multiple disabilities and I can remember very, very clearly within a week or two of her being born, the first thing I wanted to do was see a kid that was older so that I would have some clue: What does this look like in several years? What could she do? What are my options? What are my possibilities? And thinking about that, I'm thinking, you know, we're spending so much time and resources maybe and rightfully, on mentoring services for the child. Maybe we need to look at, you know, putting more resources and effort into mentoring programs for the parents. Because so much hinges on expectations from the family from a very early point in time. And if that's not instilled in the family from day one, then done the road during transition plans and mentoring programs, and all those wonderful things that we do for young teens and young adults, you know, is sort of late. Where if we were doing that for parents with babies and mentoring and helping them, maybe we would not need, you know.

BARNARD : Yes. We agree with you a hundred percent and I know that we just had recently had a conference where we brought in the parent training and information centers and the deaf-blind projects and NTAC and we're all trying to brainstorm how do we get this information out to parents. How do we give them support? If you consider right now the population that-I believe it's two children for every thousand children of disabilities have-or two percent-is it two percent?

> Two out of every thousand special ed students are deaf-blind.

> So it is a really low incidence disability so it is very hard to find that vision and so hopefully we can assist in doing that. And one more thing that I would like to mention is the study is available back on the table and anyone wants to glance through it. It is also-there's a web site where you can access the study on line. So that's available. And now I'm going to turn it over to Dorothy and she's going to wrap up so-.

>>: I want to make a short comment the person (inaudible) stole what I was going to say. [Laughter.] I don't know who but you stole what I was going to say. [Laughter.] Yes. My experience when I go and visit parents with young deaf-blind child, they have limited expectation. When I meet them, I said, your daughter transfer to college and parents are: I don't expect my child to go to college. Ask them: Why not? And they think about it. They never thought about that. And I said, well, I am deaf-blind. I went to college. I know people who even are fully blind and fully deaf who also got Ph.D. Why are you limiting your daughter's choices? And the problem is that parents had no idea what to expect for their children. They have no role models. So I think important for transition, children who are deaf-blind to have mentors who themselves are deaf-blind who are successful in their work and function as independent adults. Yes. We'll help the youth and parents understand where the future can raise their expectation to. Thank you. Who is next?

BARNARD : You are Washington Walt I thought Kathee and you are going to give interactive activity or something.

BARNARD : Because of the time we're just going to go ahead.

>>: Want me to do the best practice now?

BARNARD : Yes.

>>: Okay thank you. Okay, Shawn and Kathee gave you some ideas about some of the things that are happening right now. Statistics don't look good. I would like to share with all of you some ideas of best practice, what we see that is correct work and help make things more successful. Some of the things I will share with all of you will not work with everyone. It depends on individuals. But you will have some idea what to add to a transition planning to help with making it more successful. One of the first things we would like to discuss, self determination. Many of you already know about self determination, but we don't know if the deaf-blind person is learning how to become self determined, make their own decision, develop self-confidence to be able to get a lot of information and share what they know about themselves. They need to know that they will be taking risks. They take control of their life. The increase in self-awareness about themselves. Though self determination empowers them to participate in their planning for transition out of school to work or school or community level.

Also learn how to advocate for themselves, to make sure that they know their needs, how to ask for support services, where to look for support services. All of that will be for self determination. Another best practice is mentoring. (Inaudible) talked about deaf-blind mentors. I would like to tell you about last year in here in Washington state the deaf-blind children's project had an Usher's Syndrome retreat weekend. They had parents who had children with Usher's Syndrome. They also invited deaf-blind adults with Usher's Syndrome from the Seattle community to participate. There were several deaf-blind adults who sat in a panel and explained their experiences, how they grew up, their background, what type of employment they are working or they are not working. The deaf-blind youths and their parents were listening to these role models and learned from them. And what I understand was after the retreat, many, many people came up and told the deaf-blind children's project how very much they had learned from these mentors and how much they have to look forward to for their future, for their children. So mentors are very important factors to bring in for transition planning. They can participate in the transition team or they can be arranged to meet with the parents and the deaf-blind youth for a period of time to show how successful they are in their life. We also have the person-centered planning. Many times IEP doesn't include person-centered planning and this is a very important part of an IEP or for transition planning. It includes the whole person. It includes what would happen to them in their social life, employment, community level, and residence.

To understand the dreams of the individual and for the parents. To establish a record of current events and to achieve transition goals. The youth will take more control and ownership of their future. They make decisions about what they want to do. It is important to give them a lot of information and work experience and also for them to understand what choices they have. There are different members of the team that participate in the transitioning planning for the person-centered planning and they come from all different professional fields. You have O and M person, you have someone from the it D R service, you have someone from the different agency service providers and they collaborate together to show their resources and ideals and information. Kathee, you have examples of person-centered planning to show everyone?

>>: Yeah.

>>: Shawn is going to put a couple things up. I tried to get all the names of this student off the pages and probably you'll still know the person's name because I'll have missed at least one. This is something when we brought a group of people together and we actually brought some peers from the high school together and created all the people in this students' life. And anyplace where you see this white out, it is because it is the last name of the person or the student's name. So the idea was in the center is the student and who and what is closest to him in his life is the first Kirk Sal out. The next circle out is the next group of people. So he is understanding who is the closest people to him, who is who he is more intimate with. One of the things we taught him is you don't go up and hug everybody in the whole world. If you don't know them you go up and offer them your hand as a handshake. Something like that. This visually assisted the student in understanding who was closest, who was most intimate and his best friends and his family that he could hug versus people he didn't know. So this is just one page.

This is actually in the handout that has got this in front of so you can take it with you. And the next page. And then another page we identified like the places, what places were important to him and what people were important. And so this actually happened in a community not too far from Spokane so we were identifying that in Spokane these are the people and the places he had to go often for medical needs to the hospital, so Spokane became a more interesting place and he got to know more places there. And then the next page. And then as a team we kind of tossed in what are important things and what about his future? And tried to figure out what would be important, what are things we want to keep in mind for his work life? Well he likes computers. He loved it. But he's probably going to need some assistance with it. Very, very physically involved in addition to being visually and hearing impaired. So those are some of the things that we put together and then there are several more pages of what works for him, what doesn't work for him. Issues accommodation you would have to make, those kinds of things are all on this attachment. But that's the concept of a person-centered planning. Approximate and one of the things we started doing was getting families to identify people that are important in their child's life that they might bring to one of those meetings. So this family happened to bring the minister of their church. They also brought a neighbor who really liked this kid a lot and did a lot of things with him. The neighbor came up with some great ideas that nobody thought of for him. I mean, things that none of us came up W- you know all the quote agency people who should know it all. But we didn't know him as well as the neighbor and the family did. So that's one of the things. We've really started doing is encouraging families to look at where are your support systems and those can be private personal friends. They don't have to be from some agency. Because I think sometimes we've made parents dependent on agencies instead of helping them seek other kinds of support too. And really validated the other support they get from personal friends. Dorothy?

>>: I would like to share a story with all of you. I was going to do this during the self determination part and I skipped over it because I wasn't sure about enough time but I think you will be interested hearing about there because it is about me. [Laughter.]. But when I was 18 years old, and I graduated from high school, I decided I wanted to go to college. I became self determined about what I wanted to do with my life. Guess what? My parents didn't support that. My father was very old fashioned. He was from Europe. His belief was that woman place is in the home and raising children. My mother she supported me because she knew that I knew what I wanted. I was stubborn. And also I was probably college-material although I did not take college preparation courses at that time. But I started in my senior year wanting to go to college. I told my father, I said: Okay, you don't support me to go to college. I want to go to college. I will go to work for a few months and earn my own money and go for one semester, just so I can experience college. So what I did was I graduated from high school, worked in a bank for six months, earned enough money to pay for one semester, and I entered the university of Miami in Florida for one semester of college life.

During that one semester, my parents came down to visit with me and my father was so surprised to see all these women in college, and. [Laughter.] And also very surprised to surprised to see how successful I was doing and how well I was doing. And he was so proud that he said Dorothy, okay. I will support you to go to college. I'm very proud of what you can do with your disability. And I continued to graduate with a bachelor degree. And then later on, when I became older, I went to graduate school at my first deaf institution that was Gallaudet university. And that was another self-determination because at that time, I didn't know sign language. And I knew that with my vision loss was deteriorating fast and my ability to lip-read-I grew up as an oral person. My ability to lip-read was rapidly going downhill so I knew I needed to learn sign language. So I told my husband, I said, Ron, our daughter is going to college herself. She's a hearing sighted girl. I want to go to graduate school at the same time. And I told my husband I would like your support. And he gave me his support and I went to graduate school. So I as a person became self determined about what I wanted to do. I thought I would share that story with all of you.

The other part of best practice, sharing collaboration, case sharing. We are case sharing. Recently some wonderful things have happened with Washington state. The department of services for the blind developed a memorandum of understanding with the department of vocational rehabilitation. In the memorandum of understanding, the two VR agencies agreed to share cases when they have customers who are deaf-blind. With the two agencies sharing cases, you have the best of both worlds. You have department services for the blind who are very knowledgeable about the blindness. You have general VR who is very knowledgeable about the hearing loss. And when you have the two agencies together in collaboration, working with individuals who are deaf-blind, you have wonderful collaboration with case sharing. And these two agencies can be a part of the transition team as well. We have other collaborations in the communities. You have other services that can be asked to join the transition team. For example, in Washington, in Seattle, we have deaf-blind service center. And they are very, very active in community advocating and case management services. They will be very good choice of information, source of information and teamwork in working with transition-age children.

We also have my agency-age 14 and older in transition planning and adult services. So it is very important to include all of the agencies that you know that have the skills and knowledge and resources to work with the transitioning team in order to bring the best possible services for the individual who is deaf-blind. I'm finished with the best practice right now. Those are just a few. I want you to know there are many, many models all over the United States on transition planning and you can find out about many of those through DB Link which is a national clearing house. We have a person here named Peggy Malloy from DB Link who will come up and give a presentation about resources from that agency, but before Peggy comes out I want to talk about two resources I want to share with all of you. There is a book here published by my agency. It is called Usher's Syndrome, Understanding Usher's Syndrome, an Introduction for School Counselors. Very, very good book. If you are interested you can buy it from my agency. I will put it on the table. You can look at it after the workshop. The other one, called a guide for students who are deaf blind considering college. This is for the individual himself or herself who is deaf-blind. What it does is have a list of (inaudible) and what to consider for their needs. For example, how to request interpreters, what kind of low vision aids are available, orientation and mobility issues. Many different things in here. This is very, very useful and helpful for individuals considering going to college for their own use. Unfortunately, HKNC no longer prints this book and it is not available but Peggy has told me earlier that DB Link will be able to make copies available to anybody that would like to have one. I will leave it on the table for you to look at also. Is Peggy here?

AUDIENCE: Yeah, here I am.

> Do you want to come out and give your presentation now about resources?

> I am Peggy Malloy and I work for DB Link. I want to tell you a little bit about our service. I'm sorry I was out of the room. Dorothy you just talked about a couple of resources while I was gone?

>>: They are on the table right there.

> DB Link is the short name for the National Information Clearing House on Children Who Are Deaf-blind and essentially we're just an information center specifically about deaf-blindness. We're funded by the Department of Education's office of special education programs and we provide information to anyone who needs it: parents, teachers, other service providers, to meet the needs of children who are ages birth to 21. So we have tons of information, a really extensive library, and a lot of the information that we have is transition-related, and so would be specifically applicable to you as you do your work with people who are deaf-blind. And I want to tell you a little bit about some of our specific services. One of the unique things about us is that we provide really personalized information, so if you have a specific question or you have a topic that you want to learn about, you can contact us and we will try to find information that specifically meets your needs and send it to you by mail. And that includes both content-specific information and resources, referrals to resources and services.

Our structure is we have three agencies work together to provide this one service, and we are partners who contribute are the Helen Keller national center in New York, Perkins school for the blind in water town Massachusetts and teaching research at western Oregon university where I'm from. We have six information specialists which is why we can provide personalized service. We have really good staffing for that. And two of our information specialists are librarians. I'm a librarian. And then we have four people with expertise in deaf-blindness. So we all work together with our different levels of expertise and also with the different agencies that have different areas of expertise to bring together our collections to provide information to people. We also have publications, fact sheets. I brought some examples of some back there. And one I wanted to point to in particular is deaf blind perspectives which is a small magazine that comes out three times a year, and it's free. It is a joint publication by both DB Link and N tag.

We also have an extensive web site so if you're somebody who likes to do your own research our catalog is on line there so you can do research and call us for anything specific that you need or if you have any questions while you're looking. But our newest slowing began is we're more than just a web site because we really want people to know that we're there for people to contact us and even though we're at three different agencies, we have just one phone number and one e-mail address and we're very easy to get ahold of. So that's basically it. I will be around afterwards. I can show you some of the materials if you're interested. Probably the best thing to grab if you only want to carry one thing is our little magnet that has our contact information on it. But I would Justin courage you if you're working with deaf-blind people if you have any questions or you feel like you need information, to think of us as your library about deaf-blindness and give us a call. Thank you.

>>: Thank you Peggy. Wonderful resources. I use them often. Some of their information are also good for the services too. I'm curious with all of you in the future we have workshop on deaf-blind maybe in two years conference, if there's any specific topics you would like to come to, because for this workshop today, I'm Cheryl Davis asked me to set up something relating with deaf-blind and I thought maybe transition would be a good issue. But I'm curious if all of you have some particular thoughts about what you would like to see maybe in two years from now for the next conference to please inform me, tell me what you want to see. You have a hand up?

AUDIENCE: My name is Erica and I'm currently doing job development with at least one person that's deaf-blind and has developmental disability. And this was really informational, but if there could be any information on doing employment services specifically towards this population, it would be extremely helpful.

> Okay. Thank you so much. Any other.

AUDIENCE: Hi. My name is Annette Reichman. And my suggestion would be in the future for this workshop to talk a little bit more about your assessment in terms of an example would be personal future planning. I think you could provide more information to too about that. That kind of assessment. Not only benefits to deaf-blind people but other people as well as who are quote unquote functionally deaf. And we could learn how to apply these tools to other populations as well. If you had some sort of an ecological assessment where we could look at the person the individual's environment, that sort of assessment information would be beneficial to me. Thank you.

> Where are you from?

AUDIENCE: Currently, I'm from the United States Department of Education rehab services. But I used to work at a nonprofit agency in Phoenix Arizona called valley center of the deaf. And we provided services to an array of deaf people, deaf, deaf-blind and low functioning deaf individuals. So I have some knowledge and experience with the population we're here talking about and assessment of that population.

>>: Which one other person-

AUDIENCE: This is Kim. For potential workshops, I'm not sure whether Annette was saying make an on-site assessment of what accommodations would be needed, but that would be my suggestion. Accommodations for low vision and low hearing, hearing impaired, on the job. It would be for not only assessing it, but then what are those accommodations that are needed?

> For deaf-blind or only for hearing impaired?

AUDIENCE: Deaf-blind.

> Okay. I want you all to know that my office, the regional office, my job is to provide that also. I can also provide training to service providers on that issue one on one. Or you can have a workshop set up on that too. If I get enough people interested in a specific title and in a location and (inaudible) responsibilities to set up the workshop, I can bring in some people from my agency in New York to put that on specific topics where there are specialty. For example, if you want training on-I mean, for example, if you want training on orientation and mobility for deaf-blind people, we can provide that here in Seattle or wherever you live with a group of people. But that's something I can do (inaudible) from this workshop because this conference happens every two years. If you don't want to wait two years later, we can do something in the near future. Contact my office for information. You want to say something?

AUDIENCE: I want to say that was very interesting to know. What I found is a lot of job developers do not want to work with my population because they are afraid. They are uninformed about how to go about doing job development for them. And I feel that if they just knew-if they just got educated, it wouldn't be so scary to them.

> Yes. Yeah. Okay. Any more questions? Kathee, where is Kathee and Shawn? Did you have some other things you wanted to add to the workshop? Do we have time? Sometimes it is hard when you are blind, you can't see far away. There you are.

>>: Dorothy, I'm not blind and I can't see far away. [Laughter.]. The thing we had hoped to do was just to do maybe a little bit of brainstorming and get you all participating with us. If you look at the young-I would like to give you a scenario of a young man who is 17 years old and he's- his family has made the decision that he'll stay in school until he's 21. He is deaf-blind. He is mentally retarded at about a moderate level. He does walk. His communication, the way he communicates is very similar to the smallest boy you saw on the videotape. He does some vocalizing. But he also uses objects as his way of communicating. So if he wants to eat he'll go and-he'll go to a board and there's a spoon, a little tiny part of a spoon there, and that means I'm hungry. Or he'll go-there are certain ways to communicate what he wants to do, through objects.

So the school team is sitting there saying: Okay, so what are we going to do? So one of the things they did is they did a really good job of asking the family and observing him. And he loves to move. He does not like to sit still for long periods of time. He likes to be outside. He especially likes heavy-to push things, to pick up things, he likes that feel of lifting heavy things. He doesn't-he's profoundly deaf, so he's not interested in music and he doesn't understand when people talk to him. His vision is such that he has to be about eight to ten inches away and he can see what the object is. But anything further away, it gets blurry and he doesn't have the information. He does not read. He doesn't recognize his name. He does not know braille. And so the question becomes: So, here we are, we're looking at a few years away. We've got some time to be doing something. At the present time, what are some of the questions you all would ask before you felt like you could give some suggestions of what might go on in a transition plan?

AUDIENCE: I don't know that it is a question, but I would probably recommend to the parents to check out if they want him to go into some sort of postsecondary education, even if it is not college level, or vocational program to get with those providers now, kind of narrow down who they would want him to go to, and get them involved in the school now so they can use the next five years to learn the system. And a lot of the times the schools will contract with those agencies for those services, so that come age-out or graduation, they are ready to go. Or maybe have been ready to go a year or two ahead and maybe already working, or whatever his interests are for the future.

>>: Okay. Any other questions or suggestions people would make?

AUDIENCE:

>>: Theresa.

AUDIENCE: I guess I would want to know what resources are out there in the first place. What are my options. I would want to know what are the family goals and how much family support does he have or lack of support. I would want to know-I would want to know some basic things like his age. If he doesn't recognize his name and doesn't read and write, how does he communicate?

>>: He uses objects. And he's 17.

AUDIENCE: Okay. You said that. I'm sorry.

>>: That's okay. I said a lot of stuff.

AUDIENCE: He uses pictures or parts of pictures you said.

>>: Objects.

AUDIENCE: And he likes to lift. I would want to know what employers in the area perhaps have had experience working with the population I might be able to tap into. I guess I would want to figure out if there's any other training options for a trade or anything that could prepare him for the best employment option possible. I don't know those come off the top of my head.

>>: I mean, this is the kind of brainstorming that-that's why we feel so strongly about person-centered planning. This is the kind of discussion that needs to be occurring. And so often the schools are so forced into making sure that they cross the T's and dot the I's on all the paperwork so that they are, quote, legal, that the whole intent gets lost. And that's not to say that there aren't a lot of good school teams out there. There are. But I think the problem is that adult services know what they know and the school knows what they know. But they don't know what each other knows. It is that whole thing that you were talking about, the O and M and communication specialists before. You know, you need to help cross-train. Because if we invited in some of those people that you were talking about, Erica. Those would ask questions that those of us who work with children- Recently at the community college, one of the professionals said to me: So can you do something about getting the students to be better about getting around by themselves? Which is O and M basically. And so I mean, that showed up again. I mean, that's constant. They said that's one of the biggest barriers for the deaf-blind student on the community college campuses, because they require so much one on one. And that goes back to what Kim was talking about too. And it happens to be in Spokane again. But it is happening all over the state. Even on the west side there is a shortage of O and M people. So any other thoughts people have about that student? Because that's really what it requires. It requires people thinking from their perspective and getting ideas or asking questions.

AUDIENCE: Something else comes to mind is thinking maybe more long term. I think sometimes we get so busy thinking about the immediate, oh my God, this kid is 17 and we need to do something, so what are the employment options today? But maybe thinking beyond that. Will this individual-I say kid, young man. Does he want to live independently? What are his life goals? Does he want to have a family? I mean at 17 you know something about what you want. You might change. But you know, has he expressed any interest in those areas? Because employment today might lead to or not lead to, could prohibit options for tomorrow depending on kind of where you're going with stuff.

>>: There is a young man in the Spokane area and his providers and I have been talking a lot about giving him more information opening his world up more so that he understands that some people live in a house like his family and some people live in apartments and his sister was going off to college and so we were-we started building kind of time lines with pictures because he had some vision about what he was like as a baby and then what he was like as five and then his sister and stuff so we started to try to get him to imagine like what did you think your sister will do but we did it in pictures because his sign language and language development was not real high. He started cutting out pictures. And one day he signed to his mom, mom, graduate, he signed, graduate me, then 21, me, and then he pulled up the picture of like an apartment complex and he was going to live in an apartment. I thought his mom was going to die. She said you want to live by yourself? And he said, yeah. Yeah. He said I know how to cook you know, I mean it was basically communicating. She had no concept. And three or four years before that, no one would have thought he could have had that kind of conversation either because his world wasn't big enough. Somebody wasn't helping to expand it too. So that goes along with your comments about what does he want. And then that statistics that Shawn showed that it was families who wanted to keep the kid at home because they don't have a vision. They don't have an idea. And then sometimes for the families who have kids who are deaf-blind and have considerable additional disabilities, they look at like the gentleman who was in the very first tape, who was working at the Lighthouse and they can't begin to take that idea and apply it to their child because their child has so many more disabilities. And so that's part of the piece that we don't have.

AUDIENCE: The deaf-blind gentleman with disabilities that I'm working with, it is similar. He very much wants his own apartment and knows that he can't do everything on his own, wants a roommate, wants the aisle services. The appropriate services aren't out there for him. They are working on being developed but it is probably another five years down the road. And he is developing wonderful patience. He is unwaivering. He doesn't want to live in a house. He wants to live in an apartment. And this is the way things are going to be. And by gosh, it will happen. And he realizes now it is maybe down the road, but it is firm.

>>: That's true in our life. How many of us had to wait a certain amount of time in order to get it? Dorothy?

>>: I want to respond to her. The person who talked about working with a young man who wants independence but can't find independent living services or something, my agency, HKNC in New York will provide in-depth evaluation and training for individuals who want to have a vocational goal. And we also have an apartment off campus that the students, we call them students, can learn how to live independently in the apartment after they learn the skills they need, before they go home. So we have that service. The problem is that that training center is in New York. And many people don't want to go all the way across to the other part of the country to get the training. Some do and some don't. DVR and apartment services for the blind will support referring people to my agency if there is a vocational goal involved. So that's one possibility for some people who are-they live in Eastern Washington and have difficulty finding the services and training they need. We will accept youths in high school. We have a summer program every year that we offer to high school students for evaluation. And we also will accept high school students who graduated and want vocational training and independent living skills training at my agency in New York. So that's another option to think about. I don't know, do you have more?

>>: I'm finished.

>>: Okay. I bumped my nose on the microphone. [Laughter.]. It is funny we have different microphones. I keep bumping into them. I wanted to thank Kathee and Shawn and Peggy for coming to present today, wonderful presentation. Thank you so much. We hope you all enjoyed yourself. Please fill out the evaluation forms and I think you're supposed to give it to someone or leave it on the table or something and I will try my best to set up something to use from now, maybe involving assessments or job development or something. Put down in your evaluations your idea for future workshops. So that will give me something to remember. Thank you. If you have any questions, your last opportunity to raise your hand and ask. Any one of us, Kathee, Shawn, or me. No? If you want to see these two books on the table and try on the glasses, you're welcome. We'll be here for a few more minutes. Thank you so much.


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