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Accessing the Dream: Preparing Deaf-Blind Youth for a Self-Determined Life


Accessing the Dream: Preparing Deaf-Blind Youth for a Self-Determined Life

June 2016 - National Transition Initiative, NCDB

All young adults who are deaf-blind need extensive transition planning and services in order to experience success in adult life. Transition Institutes have historically sought to bring together young adults and their families to build skills and provide training in the pursuit of better personal transition outcomes. These institutes are a collaborative effort across 21 State Deaf-Blind Projects over a span of 10 years. The energy of the 2012 and 2015 Transition Institutes provided opportunities to capture interviews with youth, families, and service providers to share their perspectives on the experience of transition. 

This video product is based on the Taxonomy for Transition Programming developed by Paula D. Kohler, Ph.D. The video chapters offer insight and understanding based on foundational best practices in transition planning: Student-Focused Planning, Student Development, Interagency Collaboration, Program Structure, and Family Involvement.

Audio Described Videos

Contributors and References  

Introduction

Introduction

[soft piano music]

(Jeremy / Interpreter) It's really hard to see different things and... really hard to communicate. It's really just not a good feeling for me because I can't communicate.

(Brandon) I can't hear... higher high pitch sounds so I can't differentiate between f, v, like /v/, /f/, /s/ and sounds like that.

(Ashley) But I was very shy, I mean I was isolated because I didn't know how to talk to anybody I didn't have language or speech or anything like that at all.

(Victor / Interpreter) It happened in elementary school around 4th grade. Everyone knew that I had Usher syndrome and had difficulty seeing. But other than picking on me and teasing me they didn't want to interact with me, which left me feeling depressed.

(Danielle) I've had some issues getting accommodations for a geometry class, since I need tactile diagrams. Actually the professor did not accommodate me.

(Austin) Well... Sometimes as far as communication goes. And sometimes I can't hear a person and they repeat themselves and I still can't hear them, and a lot of people get impatient.

(Cody) And I want you to write on these boards, I want you to write on these boards. I want you to write down what fear you have. I want you to... your interpreter or you write it down, whatever you fear, what barrier is holding you down. Okay?

(crowd speaking)

(Man) I fear other people picking on me. Frustrations, pressure and stress. I fear influences of bad people and bad advice from other people. Ahh! (crowd) Ohh. [applause] Clap, clap. Technology, the dark, being totally blind and not being able to see at all. (Shouting) Ahh! Huu! Ahh! Ahh! Ahh! Ahh! Ahh! Ahh! No more!


Access

Access

(Narrator) Who are these young adults who are deaf-blind? It's probably not the young adult on a bike delivering your morning newspaper, or bagging groceries at your local supermarket. A young adult with deaf-blindness is considered to be of a low incidence disability, which means they're not as prevalent in schools as some other disabilities. In fact, there were about forty-two hundred youth and young adults who were deaf-blind, ages 14 to 22, across all the states and territories in 2014. This is less than 2 per 1000 young adults in special education. Nearly 90% of these youth and young adult have one or more different challenges: physical, intellectual, health, beyond hearing and vision loss. As a result they typically are not identified as deaf-blind on the annual special education child count. These youth and young adults are incredibly diverse. Their sensory loss can be traced to over one hundred different etiologies, with vision loss ranging from low vision to total blindness, and hearing loss from mild to profound. Young adults who are deaf-blind want the same thing as their peers: to be included in school activities and opportunities to shape their future lives, to make choices about college, careers, and where they live. All young adults who are deaf-blind need extensive transition planning and services in order to experience any success in adult life. They need encouragement to be self-determined and make their own decisions no matter how big or small. And they need support from a network of teachers, family members, and adult service providers not only to help them develop essential skills or knowledge but to raise their expectations and spirits. The young adults who are deaf blind come from a variety of backgrounds. They have different genders, different races and ethnicities and use different modes of communication. Despite their uniqueness and individuality they all have one thing in common; the continual challenge of accessing the auditory and visual world around them. They typically need extra support and accommodations to interact with people, places, things and information. Deaf-blindness in all this complexity is a disability of access.

(Katie) Access is a really big word, I mean, it has so many different definitions. To me, access as in access to the world, access to communication, to communicating with others, access to independence as in... being able to travel independently and having the... access to technology I need.

(Danielle) It means being able to access your environment, information, in a way that you can access it the best such as... Braille, sign language if you use it, other systems, or anything else.

(Kevin) It's like the access as in what you are able to get to, what is out there for you. And I see it as being different kinds of access, like you have access to people or what kind of people are there as a resource. You have access to resources like organizations that have things that could promote you out there, and then it also has like, unexpected access is what I would call it. It's like when you're out in the world and you somehow manage to come across somebody that has the same disability as you or has knowledge about it and can teach you a little something about it.

(Vicky / Interpreter) Access should be the top priority for those who are deaf-blind. We have as much right to equal and accessible communication as anyone else. Today, access for people who are deaf-blind is better than ever thanks to improvements in technology. Still, we can become isolated because we are a low-incidence population group. It's up to the deaf-blind individuals to include themselves in the deaf-blind community and to join the fight for our communication needs.

(Debra) We have kids that can hear but yet they can't talk. And to those we start teaching them sign language also. And it's hard in the beginning but once they learn to understand what it is, and Everybody needs a mode of communication that is the most important thing in life, it's to be able to communicate so once they learn to communicate, you can see the change in them just like that. Once they learn to communicate and get their communication in place, you know, things begin to happen for them.

(Narrator) High-quality transition services are so important for students who are deaf-blind. What makes transition services high-quality? Well, they focus in the student's interests and goals, support his or her knowledge and skill development, coordinate the efforts of schools and adult service agencies, use a structured approach to planning, conducting and evaluating transition services and encourage family involvement. Each of these elements are consistent with categories identified in the taxonomy for transition planning developed by Paula Kohler. This video provides examples of how these elements apply to students that are deaf-blind.

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Student-Focused Planning

Student-Focused Planning

(Narrator) Student-focused planning means that students participate in [high-ed] pre-development and other planning processes. Transition plans should always be set on their interests and goals. In the following series of video clips, young adults, their parents and service providers who attend a deaf-blind transition institute discuss the importance of student-centered planning and students' hopes and dreams for their future education, careers, independence and relationships.

(Melissa / Interpreter) One of my future goals is to go to the Helen Keller National Center. There I can learn different skills to help me become independent, like using a cane and reading Braille. I'd like to encourage the teens here to be open to taking advantage of these opportunities. I really regret that in the past I've limited myself. Now I get it, I realize and I'm ready to be open to every opportunity. I can be open to using an SSP or technology and I am ready to do more, now I want to encourage others to do the same, keeping in mind that it is key for parents and teachers to be involved in the process. Through these relationships we can find support from those who are open to the process.

(Elizabeth / Interpreter) I would suggest that they figure out what type of support they need depending on their own level of deaf-blindness. Also they shouldn't be afraid to ask others for help.

(Melissa) My dream is to go to college at a... in Benderville and then I want to work with handicapped children because I know a lot about disability so I want to do that, like aid or at a school or something like that.

(Divya / Interpreter) I have many different visions and goals for myself. One such vision is to hopefully get a job at some point in the future by obtaining the highest and best education available to me. Another goal is to be involved in an internationally coordinated effort to work with disabled individuals who are indigent. Sometimes people who have disabled children don't have the money to provide them with a quality life. I plan to help with building better schools, and hiring teachers which will improve their quality of life. I'd also like to be staff on a project similar to what we're doing here. I'd like to have a variety of employment experiences so that I can determine which role fits me best. In addition I'm considering a role in politics, like running for office and being involved in government. This is something I'm still thinking about because I've only had a taste of it so far. I may want to do something with the United Nations. I have various options or paths I can pursue. I'd like to try them all, until I can find something that... encompasses these goals, and becomes one clear path to follow.

(Jeremy / Interpreter) I want to continue to work, and... I want to live long. I want to get married in the future. And of course I want some money.

(Jana) Martha, can you give me some insights to what let up to your family making the decision to come to the Institute?

(Martha) We were contacted by our family specialist in North Carolina about the Institute and at first I said, "we can't do it because we have other plans this week" and then the more I thought about it I started thinking, gosh, our daughter is sixteen now, she will be hopefully going off to college in a couple of years and I realized, you know, she, we really needed to do more to help her prepare for that, I felt like maybe we have not done as much as we should have in the past. I think we've tried to protect her, do more for her, and it really made me start thinking we really needed to do something. So I called them back and said, "You know what? I think we've changed our minds, we really do want to come," so... Great. And so now you're here. And... Yes. Last night was the first night. Tell me how you felt. I was very excited that we had come and made the decision to come, as it looked last night and one of the activities they had when the students were all working together and having to collaborate on the little project they were doing, I realized, "this is great that she's here because she really needed that." It also made me start thinking about some of the things that we needed to do to help encourage her to do more. I mean, I think there have been things that we have done to help, but I also think there have been things that we do for her more, and now that she's sixteen I realize, you know, we really—specially when we were sitting in one of the parent-meetings just recently and they were talking about transitions and ways to help and it made me realize how much more we really do need to do, and that I'm really glad she's here and she's getting to meet some mentors and other people with deaf-blindness that she realizes that she really can do anything that she wants to do.

(Colleen) I want him to go to college and I want him to, you know, independently live and hopefully have a family. Yeah.

(Jose) Yeah. We want-- I know it's a cliché, you know, but normal life but, you know, as much as he can get out of this life, and to do it on his own, to be independent, you know, to have a family.

(Debra) The best thing about having a transition program is that you start early. Transition is so important, because of everything that needs to be done, it's a process like anything else, you have to start at a certain time and do certain things in order to get a finished product. So we start at fourteen doing different things, at sixteen you do different thing, at eighteen we do different things, at twenty-one things should be in place. And so the kids can go into another program or whatever.

(Diane) When I look at transition, I look at transition as life-changing. It's not about getting a job or going to school. It's about, how do I change my perception of myself? How do I grow in terms of my self-perception and how others perceive me? You see, I'm a very big-picture person, I want to help people realize their dreams, but for so many of these young people, they don't know how to dream, they're not sure what to dream because their experiences have been so limited. I think my job is to help them see their potential, to help them to dream in the first place, and then help them realize these dreams. Because it's about transitioning for a lifetime.

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Student Development

Student Development

(Narrator) There are several types of skills students need to achieve their dreams. These include skills related to self-advocacy, communication, technology, social interactions, community involvement and independent living. In the past several decades new technologies opened a whole new kind of support for students who are deaf-blind to develop these skills. It takes a great deal of planning and support for them, because of the lack of access they have to their environment. They need ongoing support from their families, educators, and service providers.

(Katie) Advocacy, advocacy means to me, to advocate for myself, to stand up and say, "I need this, I need tactile interpreters or I need voice interpreters or Braille, accessible formatting, accessible... communication," advocating for myself.

(Danielle) Advocacy means to me being able to let people know what your needs are, so that you can be successful.

(Melissa / Interpreter) In regards to self-advocacy, you have to let people know your communication needs. For example, if someone is signing too low or too far to the left or right for you to follow them, you need to be able to tell them to sign in a specific box or location. I need to describe to them my visual space so that they can sign within that same area. They may also need to wear specific clothing and to not wear large bracelets or earrings, because it's so visually distracting. I have to be able to let interpreters, SSPs, friends and family members know what I need. Also, those needs change at nighttime.

(Elizabeth) An SSP is really important for the deaf-blind, specially the students because they are still learning. They are learning their communication needs, they are learning how to actually let people know what that need is and an SSP is able to get-- help them communicate that information maybe probe them to be like, "Can you see me okay? Do you need me to move a little bit?" And the SSP-- if they start when they're younger, then as they move through they are able to identify and start advocating for themselves and say, "Hey, this is what I need to access this communication."

(Kelly) I've learned a lot about the variety of technology, the variety of communication options that are available and how those can be combined and I think that that piece is really critical and really nice for the students who are here, because they get to have exposure to other students who are like them, but not necessarily exactly like them. So they get their world open to different ways of communicating, traveling... They get to observe others advocating for themselves even in this environment, you know, asking for clarification, asking to sit where they need to sit, making sure that their technology is available, so getting to observe others and be around others who are advocating for themselves and who are, you know, interacting on this level, not to mention the speakers and the information that they are receiving about how important it is for them to continue that.

(Martha) She is very self-determined on her own. That has been one thing that we've really not had to worry about with her. But I guess it's more the independent living skills that-- making her do more around the house, doing her own cooking and learning to take care of herself and washing clothes and doing things that we typically do for her a lot. Because when she goes off to college there is not going to be anybody to do that for her, except for herself.

(Jana) What do you think it'll look like after you leave, when you go home?

(Martha) Um... I hope that she'll gain a lot from this experience, learn to self-advocate for herself more, I think that we've also in the past done that for her sometimes and, I mean, she's been good about it, at times, at school, they've told me that if she has had a substitute interpreter or somebody, she will go to them and say, you know, "I didn't really understand this interpreter, " she'll talk to her deaf-ed teacher and advocate for herself some at school, which we're glad and proud of her for that, but I do think, and one of the things that they talked about in our last thing was, as they transition, let them start making their own doctor's appointments or doing things and I've realized we do all of that for her. I also usually interpret for her when we get a doctor's appointment a lot of times. I need to start letting her decide, you know, she needs to get her own interpreter and how to go about doing that. And teaching her some of those skills too. I It has been very valuable for me. I started realizing a lot of things that we really need to start working on. And I am glad that we came when she was only 16 because now that gives us time to work on those skills. At first I was worried because I saw that there were ages 16 - 22, and I thought gosh she is going to be one of the youngest students here and was a little worried about that but now I am really glad she came when she was younger. 

(Emily) What I take a look at is our whole population of young adults and students that are on census. That goes from the whole spectrum of those who have more significant challenges on top of their vision and hearing loss to those that are going to be college bound or more looking at that college and career path. We need to bridge that chasm. We need to help them to meet others, so that they understand what are their needs. So as the young people who can self advocate, they being to advocate not only for themselves but for the whole group of deaf-blind. 

(Tracie) I think that she has taught me that she has the determination and the will power to stand up for her self. And Katie has said, she came to my room last night, and she said, “Mom I learned so many things. She learned that there are people out there that are doing things that are truly amazing to her. She was so   by what Cody taught her over the weekend, that he was teaching them not only could they dream but they could find ways of achieving that dream. 

(Colleen) One he hit the middle school age, um, I requested a note taker, or demanded a note taker because it was necessary. He had a good one the one year,  then he had a bad one, so we are pushing for a new one, so that has been a big necessity. He misses about 60% of what is going on in the class with a FM System. And I think a lot of teachers and professions don’t realize just because he has an FM system for support, that it is not a cure all. It is not a catch all. 

(Jose) And one of the things that I keep reminding the teachers as we have our IEPs and get together is that even with everything that we are doing it doesn’t even put him on a even keel with the other students you know. And to think that just because he has the support, he is on a even level, and he is not. And you know, they don’t realize how much extra work it is for him to do it. It comes to mind one day I asked him to write all the notes for everything because he wasn’t going to have a note taker the next day, and I gave him an incentive. If you write all these notes, you know you will get to have your iPad for whatever amount of time. And He gets home that next day, he bring all these notes that he wrote, barely legible, but he brought them home. But he was so tired. It took so much out of him. He slept the rest of the day. He couldn’t even do homework. So it’s a real eye opener when you realize how much harder it is, it doesn’t put those kids on a even keel, but we gotta give them at least a fighting chance. 

(Emily) One of the things that we think is really important when we have a transition institute, we build in multiple layers of activities so that we look at a true transition experience. So you bring together young people from different places, and we want them to kind of celebrate where they are from. So we make sure they tell us about what they are interested in, what are maybe gifts and talents they have. So that they are becoming role models for each other. So that they say ohhh I didn’t know deaf-blind people could do that. I might want to try that too. So we build in what are their skills. The other piece that we know is that it’s important to have things that you do outside of the academics, outside of the focus on the career and college ready.  That’s all important and we want to build those skills, but what are you going to do for fun, how are you going to socialize, how are you going to have a rich life. So we want to give them that opportunity. 

(Vicky Magliocchino) To become a leader as you grow and attend school, and possibly college, it is important to be involved in many activities. Like clubs, after school activities, sports or theater. These types of activities offer you a variety of skill sets. Once you become interested in a specific area, then you can become a leader within that group. For the future of deaf-blind organizations, youth or teenagers will need to assume the roles of leadership and take our place for the longevity of the organizations. 

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Interagency Collaboration

Interagency Collaboration

(Narrator) The transition institutes open a door for students to learn about organizations and agencies that can help them with transition. It's often hard to navigate the numerous education and adult service systems. Knowledge and support through this process is crucial, and partnering with organizations like the State Deaf-Blind Project, Parent Centers, and the Helen Keller National Center, and other organizations, can provide this type of support.

(Linda) I think we've talked about just how complex the life is for someone who is deaf-blind and when I say that, I'm talking about the fact that your dream for what you want your life to be like, maybe across many settings, different things you want to get out of life, you want to go places, you want to live in different environments, you want jobs. All of those dreams can only happen when you bring resources together in the room and those resources are generally coming from different agencies, because there is an agency that supports transition, transportation, there's an agency that supports living, an agency that supports work, you know, supports around work, and just an agency that says, "Let's go have fun!" You know. But there's no one agency that generally supports all areas of life, so, just by the complexity of life of someone who is deaf-blind it's going to mean that you are going to always bring agencies together to figure out the support for a whole day, a whole week, a month, a year. You are going to need all these different agencies together to actually make good life happen for someone who is deaf-blind.

(Jana) In Arkansas, the family, we call it Family Consultant, and I work closely with the Education Consultant. It's a full-time position but we serve the families that, whose children have become eligible for our program. Our primary goal for our State really is for the families to be able to connect with each other, as well as navigate the system, that, through the education system and the medical system, we try and support them in that direction too. But the key thing is to bring families together, so that they can learn from each other, support each other, and realize that they're not in this isolated community, that they don't know where to turn to, or where to go, or who to talk to.

(Kelly) The fact that this is a multi-state camp, it's been really tremendous for us. Actually, a few months ago we had a local state event for transition and we were able to connect families with some of the local resources, but because we are, you know, a smaller state, we had a fewer number of kids there, and so, while it was really nice for parents to meet each other locally, it was really nice for families to connect and the kids enjoyed themselves. Having a multi-state event like this allows kids to meet peers that they wouldn't otherwise meet and they develop relationships and develop friendships. And then we are able to get plugged in to more of the national resources, and some of the tremendous speakers that we have here, so, I think it's an incredible benefit. And just the ability to watch the kids come in, and be nervous, and sitting with their parents, and not sure of things, and by the end of the first night be sitting at tables and choosing this morning to sit with other kids and to have conversations. It's just an incredible amount of confidence that I see them develop, and I think you can't really do that on a small scale, having this joint relationship with other states helps us to increase those numbers and give a lot of options to the kids. As a state project, our role after this institute is then to make sure that the skills and the information that is shared here is something that's carried on by those students and to continue to support their families and promoting those skills. The other piece that I think is really critical for us as a project, is helping students to learn how to, and schools districts, to learn how to have more person-centered transition planning meetings, so that there can be discussion about, the discussions that are happening here, discussions about hopes and dreams and goals for the future, and what are the steps to get there, those are discussions that can happen with trusted supports in the family, trusted supports in the school.

(Linda) When I think of how person-centered planning can help just programs, influence programs that are responsible for the education of students who are deaf-blind, person-centered planning philosophy says: "We are not real sure how we should best support this student, you know, this is a very unique individual we probably have a lot to learn," so, you first learn the student, you know, and then listen to the other people who know the student best, that we, as educators may not really know how to go about making life good, or help the student learn. We've got a lot of people we've got to listen to. So, person-centered planning can actually influence the way programs view themselves, you know, by having a different view of the student, and really thinking about that individual student, and knowing, wow, we have so much to learn that we just don't know.

(Marilyn) One of the most important things about being a rep is our partnerships. We really want to build capacity in our regions. And when I say region I'm talking all four of my states, okay? And that includes not only just the adult services, but truly the young adult services. Getting in there early and trying to develop that strong partnership with locations that may have never worked with adult services early on. For instance, I've started working with several of the schools in my area, going in there, talking with the principals and the directors and saying, "Hey, I'm Marilyn, nice to meet you, I want to let you know what I do, and I also want to let you know about the services in your area, and set up meetings and get us all together." Rather than starting when the child or young adult becomes twenty-two and almost about to graduate, or twenty-one in some states, we're trying to get in there earlier and work with them. Maybe somebody wants to work with us at the age of fifteen, but they're not ready yet, but they have questions, "What to expect for the future? What services are out there? Where can I go to get advocacy?" So, we get in there and try to build those relationships with the families, with the individual students, with the older adults, I mean, with everybody. Because we never close a case, and maybe twenty years from now they say, "I need you now. I didn't need you when I was fifteen, but I need you now." So, we may have to come back and let them know, "We're here for you, whenever you're ready, we'll take you where you're at." Many people don't realize, but the families need help too. The families get tired of advocating. Trying to reach out, either it's with VR, only if they're looking for a job. Mental house services, somebody will advocate only if they have a mental health diagnosis, you know, if it's in the school system, they'll advocate if they're in the school system. What about everywhere else? The rep can come in there and provide that connection, and that support in between all of these agencies, provide that collaboration and let them know, "I'm here for the provider, and I'm here for the family, I'm here for everybody to get everything linked together, nobody's left behind here, we're going to take you step by step, and again, you can reach out to us anytime." There is, with the state deaf-blind projects they have deaf-blind census, okay? For us, we have the Helen Keller National Registry too, and this is helping us in increasing net registry, that registry, which we also provide statistical information, letting the federal government know how many are in our states, you know, making sure we maintain the services we have, and if we can, you know, adding additional services. That gets us in the door, meeting the families, meeting the teachers too, and meeting the students before they even come out of the school system, giving them that additional support. Some schools don't provide any equipment, so, what we're doing is we're finding that out, getting there and advocating, explain to the schools, you know, "This is your job, is to provide that service." The families go, "We didn't realize that." And then, now they also have equipment at home to help them. This National Deaf-Blind Equipment Distribution Program, okay? Or, as people say that: "I Can Connect," okay? That program has been phenomenal for us, it's helping us get into the school system, it's helping us reach in there and say, "Listen, if you have somebody five years old, and up, they can get equipment through this program, for free, they can have their equipment at home." So, everything they're brought and, you know, they're introduced to at school, they can now continue and use it at home. Number one goal for that program, of course, is distance communication. I see a lot of our folks are isolated. Their only socialization is in the school, so, for them now, to go home, they can stay connected with all of their friends, all of their, you know, teachers, and now a lot of teachers are doing stuff online. So they're able to, then, connect at home with that. The great thing about the "I Can Connect" is we are reaching out to families and individuals of all ages. Like I said, five years old, we can get somebody equipment, okay? All the way to, I think one of the oldest consumers I had was ninety-eight years old, okay? So, like I said, "you need us now, we'll be there, you need this later, we'll be there," okay?

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Program Structure

Program Structure

(Narrator) In order for transition to be successful, transition planning and services must be embedded within a structured program. Annual deaf-blind transition institutes, offered by the National Center on Deaf-Blindness, state deaf-blind projects, and other agencies provide this type of structure. The institutes are intensive learning experiences where students develop self-advocacy and self-determination skills. They also provide opportunities for students to meet and share their stories with peers, and hear from role models who know what it's like to have been a young adult with deaf-blindness. Family members and service providers are also involved.

(Jana) I think transition is so important, and the reason why I do is because we set standards for what life is supposed to be, like, after high-school, and preparation for that should be as early as possible.

(Elizabeth) It's a different kind of communication need for deaf-blind than just deaf than hearing, I mean, deaf has needs, have needs for communication so just, you know, interpreting, things like that.

But deaf-blind is a little bit of a--within that umbrella it's a separate need, and for people that are trained in it it's very important for them to know how to interact with their consumer and what their needs are for visual and auditory access and it's different for every single person: I think we have twenty kids here and every single one of them has a slightly different need. So, you're in a room and there is a presenter and there's fifteen different things happening for communication and it's just amazing to see, but to think about when they get out there into the community what's happening for them, you know, what kind of supports do they have. So it's really important for us to bridge that gap between, "Hey, here I am at school and I have all these supports and I have these people reminding me, you know, 'this is what you need to do' or 'hey, do you need this?' or, you know 'are you understanding everything?' "And then they graduate and they leave the school and that umbrella of safety and support is kind of, it's lessened. So this is like the transition institute is that bridge between, "I'm in high-school and I have people telling me and helping me and reminding me" to, "I'm an adult, I'm on my own and I have no idea how to find these supports". The transition institute, that is exactly where these kids need to be because they are getting all of that, "how do I communicate what I need".

(Kelly) As teachers, as providers, as parents, there can be a tendency to help too much and so to be in an environment where every person who is working here has the goal of promoting independence, every person who is working here has the goal of promoting self-advocacy, and so it's constant training, 24/7 on how to do that. It's really nice to see.

(Emily) One thing that I always say: these institutes are so transformative. We can do technical assistance, one-on-one, talking with the schools, talking with the young people, talking with the parents, and you get very slow change or progress. Here, it's magical and transformative, the amount of change that you see in two or three days, it's just phenomenal.

(Jana) So the transitioning for deaf-blind students, the institute, this weekend, the importance of that, really is for both sides of the coin. For the families to be able to start letting go, and to realize that their child is highly capable, and to see the other students also.

Then for the students to branch out and take those risks of independence that they are going to be able to do eventually too.

It's about growing up.

(Emily) When we take a look at offering these special retreats, or special institutes as we call them now, a lot of it is about bringing together the young people that maybe for the first time they've even heard the term "deaf-blind." In their own schools, in their own states, they might be the only student who has a vision and hearing loss. So here they can begin to form a sense of community, an identity about what it means to be deaf-blind and not only begin to accept it, but to embrace it. So once they understand a little bit more about their challenges, they can now become advocates for those who maybe don't have as much a voice for themselves. So they begin to learn what are some of the different issues, and that we are all deaf-blind, it doesn't matter whether you have more vision loss or more hearing loss or if you have physical challenges, or even if you have communication challenges.

Then we can begin to speak for all of us, to be proud, to be the best that we can be. One of the things we hear from the young people is that one of the big takeaways is being around other young people who get it.

They don't have to explain, they don't have to be sorry for it, they don't have to apologize. So I said: if this is this important, how do we continue to make sure that this happens? So one of the things that we did was to develop an online toolkit, so that it is something that can live and breathe, electronically, for anyone who wants to access, "How do we go forward?" Another is we've created webinars that describe how to use the toolkit. In the beginning we started out with just Georgia and Florida, taking turns offering the institute. And the other states came and they joined in, and it's one thing to kind of watch and help, and it's a completely different animal to have to host it yourself. So what we learned is that we need to expand to other states to become host states. So in-- so far we've had Georgia, Florida, South Carolina, Mississippi, and now Kentucky. So as each state does the institute, it grows, it gets better and you have more people that are able to do it.

So it's sort of like as you see it you grow it, and that's really important.

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Family Involvement

Family Involvement

(Narrator) Above all else, families matter, they know their child better than anyone else. The deaf-blind transition institutes provide opportunities for parents to share their personal knowledge and strategies to get connected with programs and services. As they build relationships with other parents, they realize that they are not alone and are able to provide support and inspiration to each other. The connections parents form at the institute help them see that their child's dreams are attainable.

(Emily) "It's never too early to start," is what I would say to families, when you're thinking about transition from high-school. That might be an odd thing to say, especially if I'm talking to a parent of maybe a ten-year-old. But if I don't start building some of those self-advocacy skills, some self-determination skills, and if the parent, we don't help them to dream big for their young people, then they're as trapped as that young person may be. So I say, "Start early, have high expectations and let your child have an opportunity to try many different things so they begin to develop what their interests are, what their skills are, and help them to meet other adults who are deaf-blind, or even what I call near peer or mentors", someone who is about, they may be in their twenties or their thirties, that have recently gone through some of the same things that their young people are going to be going through. We as parents, we as educators, we can give them some idea. But you know, "unless you've walked a mile in my shoes you'll never know." So connecting them with adults and young adult mentors is so important, because then the young person can say: "Oh, there is someone just like me! And if they can do it, I can do it too."

(Linda) The most important person in that team of support is... are family members. The most important people are family members, and so they are the ones that will be there the longest, typically, in somebody's life. So it's very important to have their thoughts and opinions and feelings known as you're getting to know that student and the student's thoughts and feelings.

(Jana) And as a parent, here, have you been able to connect with other parents, do you feel like that's been a value also?

(Martha) Yes, it has, I've already spoken to several last night and this morning, and it's been great. Our daughter actually has CHARGE syndrome.  And I got to meet another parent who has a child with CHARGE, so we got to talk some this morning and share. And it's been great to be able to connect with other people because it is a low-incidence disability so it's nice to have that, to be able to see what other parents have gone through and how they have, what they have dealt with and... So that's been very helpful too, to connect.

(Colleen) I've connected with a lot of the families and a lot of the moms, and we are sharing our stories. And it's good that we can go back and connect and find different things that have worked for some people or give advice to other people. And that's a big thing, because it's all about connection, it's about learning about experiences that you can to help others or they can help you in some way.

(Steve) The big thing that I've done this weekend is the fact that I have always been kind of holding on too tight, afraid to let go.

And this weekend they are making me, you know, let my son do his own little thing, and it's not that I didn't think he could do it, I just, you know, it's one of those protection things as a parent.

(Jose) I think the biggest help here for him to, to help him to start to transition, is being able to sleep in the dorms with the other guys, I mean that, I can't say that enough, I mean that's awesome, and they made him feel so welcome. To have him go to that from always being clingy, always being next to us. This is the first night he has ever spent away from us and it's a huge milestone for us, it really is.

(Steve) Brad, Brad has always said that he wants to go college. And getting some of the resources I've got here in the last two days I've learned who I've got to talk to, what I need to start finding about the schools that he wants to go to, find out a little bit more about the IEPs the, you know, the special requirement set, or required by law that they do, that I didn't know about. I mean I've been dealing with a little bit at home, but, you know, talking with the parents here, I have found out there's a lot more out there that I can be doing, that the school systems need to be doing, and the governors need to be really paying more attention to what's going on here. I mean there are too many people that keep saying that, you know, to me, you know, before this weekend, "Well, your son has got a disability but, you know, he'll always live at home and you'll be able to take care of him." And that's not what he wants, and now I'm seeing that, you know, he can go on and do whatever he wants.

(Colleen) It was kind of a very, eye-opener, this weekend, listening to everybody about, you know, like the independent living, and going to college, because he always thinks he is going to stay home and go to college or whatever, but my goal for him is to go to college even if its close by but have independent living, and just listening to something is really, a lot of fighting back a lot of tears, but I learned a lot from all the different groups of things that are out there to, you know, transition.

(Tracie) Start learning about their child's disabilities from the time their child is first diagnosed, learn how to let go of the child, from baby steps onward, and learn how to help their child, support them every step of the way, but also to let the child make decisions for themselves, starting again with baby steps, moving onward to where that child is able to walk on his or her own feet.

(Annie) That child is looking to that parent for knowledge, for understanding, for everything, they are reaching out to their parents for everything, but if that parent doesn't know what to do or how to go about doing it, that parent cannot help that child, so the more knowledge that the parent has, the better that child can be.

(Jeremy / Interpreter) Definitely my family helps me. Like my brother, he'll explain different things to me and he is really good at acting things out, and he's very proud of me and helps make me proud.

(Interpreter and Danielle’s voice are repeated by interpreters in the audience who are letting the deaf-blind audience members know what is being said)

(Interpreter) So Danielle

(Crowd) So Danielle

(Interpreter) how do your parents,

(Crowd) how do your parents,

(Interpreter) and your family,

(Crowd) and your family

(Interpreter) support you

(Crowd) support you

(Interpreter) in moving towards your transition goals?

(Crowd) in moving towards your transition goals?

(Danielle) My parents and family.

(Crowd) My parents and family

(Danielle) were very supportive

(Crowd) were very supportive

(Danielle) they never held me back

(Crowd) they never held me back

(Danielle) and let me go different places

(Crowd) and let me go different places

(Danielle) and do different things

(Crowd) and do different things

(Danielle) such as

(Crowd) such as

(Danielle) getting on airplanes

(Crowd) getting on airplanes

(Danielle) and flying to other states

(Crowd) and flying to other states

(Danielle) to participate in camps

(Crowd) to participate in camps

(Danielle) even though

(Crowd) even though

(Danielle) they were afraid to let me go

(Crowd) they were afraid to let me go.

(Melissa / Interpreter) I would tell parents to sit and talk with their children, research what resources are available for them, help them meet other deaf-blind role models, encourage your children to make their own decisions and to not always rely on their parents. Encourage them to make decisions on their own. They need to feel that they can be open to making their own decisions as they move forward in their lives, not having to depend on their parents. They should rely on their parents as a guide who can encourage them in a successful direction

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Participants' Advice

Participants' Advice

(Narrator) What advice do you think parents and young adults would give a person who has never interacted with a deaf-blind young adult before? What would young adults who are deaf-blind hope others would know about them? Deaf-blind young adults have the same desires, hopes and dreams as any other young adult. The advice they would all leave you with is just listen and learn from them.

(Ashley) Yeah, I have some experience with speaking to people about deaf-blindness. I think, what I think is important about being deaf-blind is... always understand, look at the person and, the deaf-blind individual's view. Look at them in a different view but don't look at them in your view, because you will never understand what it's like to be deaf-blind unless you look at it in a different way. I mean it's just, think about it, you have to think deep about it. Just, you know, think very hard about it and think about the other person's point of view and I would ask questions, it's good to ask questions about it, not be running away from them just because you think, "Oh, no, how do I deal with this? How do I deal with it?" It's scary but, you know, just face it, that is the important thing.

(Annie) Let them know that-- don't treat a disabled person differently just because they're disabled. Get to know that individual, get to know where they are coming from, what they know, because you thinking less of them then you don't get to really find out the type of person they really are, how smart they are, how happy they are. They can help you in a lot of ways if you don't pre-judge them.

(Aubrie) That we are basically like everybody else, but we can't see good or hear good, and you can still find a way to communicate with us. You would have to learn how to do it and it would be hard at first but once you get the hang of it you will know how to do it and you'll be like, "Wow, this is cool."

(Darrel) Look past that kid's disability or the young adult's disability because what's going on in their head is just like yours. It's not, you know, it's not any different. The fact that they may not see or they may not hear you, that's, you know, the communication barrier but one that can be overcome.

(Tracie) I would tell them that deaf-blindness is not in itself a disability, it's how the world perceives deaf-blindness that creates the disability. And I have taught my children from a young age that they may have disabilities but they should see it not as an obstacle but as a challenge to overcome, and they can find ways to overcome those challenges in their lives.

(Austin) Just the fact that, in this retreat, deaf-blind students learn how to, you know, transition from high-school to adult life and that is sometimes difficult, because making, with making the transition they have to--deaf-blind people need, you know, special things and they have to be able to, you know, work to get them.

(Danielle) I would tell them that they should come, because that way they can connect with other deaf-blind teens, and that in itself will-- I think they'll be able to have someone to express their frustrations to, and also they can get with other people who are deaf-blind and maybe solve problems together. Some things I did learn at the institute in 2012 was essentially accepting that I'm deaf-blind, it was my first time being around a whole group of other deaf-blind people. Before I knew I had hearing loss but I really didn't associate myself as deaf-blind, I thought, "Oh, I can hear, I'm fine. "And then as I started being more independent I realized, "Hey, no, not really, I kind of can't hear half the time", you know, the traffic sometimes I can't hear it. But, just being around other deaf-blind people made me realize that, "yeah, I'm deaf-blind as well."

(Kevin) I've learned not to let my disability get in the way of our goals, yet still we have to keep our goals realistic. And I've also learned that you have to get your references and the services gone to and done before you move on to higher things like college and whatnot, so you know you have the skills you need to do what you have to.

(Elizabeth / Interpreter) I did learn many different things, specifically through using the goggles, that vision is different for everyone who is blind, some have tunnel vision, which I have in my right eye, while other people can't see far away or can't see at night. Blindness is different for everyone, some are even fully blind.

(Tracie) Well, before I came here this weekend my husband and I were thinking that Katie would probably always live at home and that we would end up taking care of Katie for the rest of our life, but through this weekend I have seen that Katie can be independent and learn on her own just as I have. And I guess I should have seen that in myself because I am also deaf-blind. But, I guess I thought that because this is such a different world than when I was growing up that maybe Katie couldn't do it and now I know that she can.

(Annie) The most important thing that I've learned here was that my child has a goal and I can help my child to reach that goal, not tell him, "no, you can't do that." I can tell another parent, "don't tell you child--" if they have a desire to do something, "don't tell your child, 'no, you can't do that.' But help that child to reach that goal that he desires to reach.”

(Danielle) I would suggest maybe, there's a lot of deaf-blind groups on social media now and there are several Facebook page groups, just search, do Google searches, for internet resources, they're out there.

(Kelly) These students need to know that they can achieve so much that they might even surprise themselves. I know for sure that they will surprise others around them, but I think that there is a potential that's, not necessarily hidden, but it is greater, it is larger than what they may even dream of.

(Diane) I think we're going to have to develop some different ideas about our roles, it's not just about going to meetings with young people. What we need to do from my perspective really demands high energy from us. I believe firmly that you can't teach what you don't have. I can't teach a young person to dream if I don't know how to dream myself. This is important because these young people deserve the very same things that any of us deserve. So if I say to you, "How do you define the quality of your life?" And you tell me, "It's the friendships, it's my family, it's having a job that makes me feel that I'm giving something back, that life is worthwhile,  knowing that I matter, recreation, having a good time with friends." Now, if all of those things are important to me, or to you, why would they not be important to young adults who are deaf-blind?

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Conclusion

Conclusion

(Narrator) The pathways to adulthood for young adults are most likely to be different. Some young adults are learning and trying to make decisions about their future with the assistance of others. These decisions will help shape the course of their lives. Some will find themselves in college, others will find a job. Unfortunately, many of the young adults will not have the opportunity to experience either, with no fault of their own. The important thing to know, is that there are no perfect transitions plans that guarantee a quality of life. However, the best transition plans meet the person where they're at and build confident and engaged adults. The journey must expose the young person to community-living experiences that include work, recreation, and social networks. This journey must offer opportunity equity and perhaps the biggest thing of all, the dignity of risk. Some of these young adults may not have a formal communication system. They may also have intensive independent living needs. These young adults, who do not appear in this video, require and benefit from the same things to become successful adults. There is a wide range of capacity in these young adults, and they must be defined by who they are and not the severity of their disability. All young adults, disabled and non-disabled have many things in common, perhaps the one trait that is universally shared is they all want to be autonomous, they all want to have a say in the direction their life should go, and they benefit from support and guidance. One strategy to assure the voice of deaf-blind adults with disabilities are heard and supported is person-centered planning. It asks the question: Who is this person? What are their preferences and strengths? What are their future goals? And how will their circle of support, consisting of family, educators and community, help them achieve their goals? Person-centered planning cannot be addressed in system-centered mandates and IEP checklists, but lives and breathes in the network of people who collectively know Our commitment to learning more about this person in educational, recreational and natural settings helps us understand them better and promotes what we want for all people, which is quality of life.

(Linda) I think person-centered planning is one of the better tools that have ever come along, when you're trying to figure out anything about a student's education, or anything about a student's future and you're trying to figure out who needs to be at the table to make this happen. And, then how can you make it happen. So one of the things that person-centered planning promotes as far as its philosophy is, don't plan anything without really knowing a student first, you know. And so, that really influences then, well then what does that look like, to really know somebody, you know, what are all the questions that should be asked, what do we need to learn about someone to fully describe them. And that's, that then leads to the planning for a student, or to really include a nice definition or a nice description, a full description of really who is this student when they're at their best, you know, what are the supports that need to be in place, what are they really wanting out of life that would make life quality. Person-centered planning has within it a philosophy that is never one meeting, we know it's going to take people coming back together as a team to go, what's working, what's not, what do we need to do next. Life is complicated so it takes a plan, a planning process to get at all those complications before you even walk into a person-centered plan with a student who has more significant disabilities, may not have a formal communication system, can't really express what they're interested in, clearly, what they want their future to be, that before you even sit down and have those conversations as a team of people with the family and these other agencies, time needs to be spent, before that actual planning moment, with purposeful... observation... notes... pictures. It's called discovery, it's time spent watching a student through their day, across some time, note-taking, writing a profile, what did I notice, you know that's going to help me then, describe when I get to the planning meeting, really describe. So really, what did I see the student doing that tells me what they want the future to look like. So person-centered planning is definitely not a checklist, it's a process of planning, sticking with the plan, having the philosophy of expecting that tomorrow is going to be a better day, next year is definitely going to get better, because we are going to be working on having opportunity, to learn new things, to think of even new dreams for the future and then, the skills it might take to participate in that future. So, person-centered planning should produce a whole wealth of information about a person's future, and then also get the supports in place to get that to happen.

(Man) The young adults you've met in this video are in an age of discovery. Each young adult has something unique about them that makes them who they are. Their strengths, preferences and interests all define who they are beyond their disability. In whatever role you play in a young person's life, may you imagine the possibilities to consider what role you might play in improving the outcomes for young adults who are deaf-blind.

[Soft Piano Music]


Reference:

National Center on Deaf-Blindness (Producer). (2016). Accessing the dream: Preparing deaf-blind youth for a self-determined life [Video file]. Retrieved from https://nationaldb.org/pages/show/accessing-the-dream-preparing-deaf-blind-youth-for-a-self-determined-life

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