Event ID: 2345499
Event Started: 6/24/2014 2:47:23 PM ET
Please stand by for realtime captions.

Good afternoon, everybody, this is Randy with the national Center on deaf blindness and I'm going to start with a description of our Adobe room, for our attendees who are low vision. And for our deaf blind attendees. So, this is divided up, let me switch into our primary room, we have divided up into sections, the largest section on the left has WebCam videos of our presenters and some of our introduction hosts. To the right, we have the closed captioning box, that is presenting real-time closed captioning. Below that is a notes box that has the dial-in information and occasionally their information is placed in the box. To the far right is a list of all attendees, the phone numbers for those that have dialed in manually, and the chat box which is to the bottom of that where participants can enter in questions, comments, any information that they would like to present to the group or to the presenters. Keep in mind that since this is being recorded, any information that you put in will be available to the public, so be aware that confidential information will be shared. We are attempting a number of different disability options for this webinar, and we wanted to be as inclusive as possible. So we are presenting it in some various formats. We are providing American assignment which, platform interpreter, who is present and visible on screen, and while the interpreter is on the far upper left of my monitor, and may vary depending on the size of your monitor, and as other WebCams turnoff, those positions will shift. So when that occurs, we will give time for our low vision attendees to reorient themselves to that portion of the room to make sure that they can still find their platform interpreter. We are also offering video relay service, and that number is in the notes pod as well. The closed captioning, as we talked about, and the video recording, which will be available on the NCDB, HKNC and NFADB website, the transcript captioning which will be saved is screen readable HTML, the chat pod information will be captured and made in an accessible format as well and will be placed on the website, along with a link to a recording. And with that, I would like to turn this over to Kathy McNulty.

Thanks, Randy. I work with Randy on NCDB and I'm here in our New York office on the campus of HKNC, it is a pleasure to be here today, I'm speaking with the off-camera. As you may have noticed, on the opening slide, this webinar is being sponsored by three organizations. NCDB, National Center on Deaf-Blindness, the National Association of Deaf-Blind and Helen Keller National Center. I would like to take a quick moment to thank the members of the planning committee. It was truly, truly a team effort. So, I first want to thank Sherry Stanger, past president and current board member, to Steve Perault, who was a HKNC regional reps and in the Boston office. Thank you to Nancy O'Donnell who is the director of the HKNC information, research and professional development department, and very, very special thanks to Randy Klumph voice you just heard was out in the office and to the HKNC staff, Kristin Layten and Stacy Sullivan, whether ongoing guidance and developing this what. -- Webinar. Many in the audience may know that this is a special week in deaf blindness. I'm very pleased to introduce the next two speakers to you who will officially welcome you and kick off this webinar celebration of Helen Keller awareness week, and will also help unfold and present our presenters, our speakers today, with us for our panel discussion will be Joe McNulty who is the moderator, he is the former executive director of Helen Keller national Center, Dinell Smith, a mother of three wonderful children, and Breanna hope you'll hear more about today, also a family specialist, and I think an expert in assistive technology. And, Maricar Marquez was a staff person here at Helen Keller and can bring forth a great deal of knowledge on technology and the impact on her life. And we are also very pleased to have Marcia Brooks representing the group I can connect and will tell us about the distribution talking which is federally funded for individuals who are deaf blind. That will give you a little bit of a feel for how it will be sending our next 90 min. and without, I would like to pass it to the director of the National Center on Deaf-Blindness, Jay Gense.

Great, thank you, Kathy. Randy, am I coming through clearly enough on my phone here-- I'm not using my headset?

Yes, you ar.

Sometimes my headset interferes with my FM so I prefer not to use it.

Thank you, Kathy. I also want to extend a welcome to those that are joining this webinar. We're really excited about the opportunity to share information with you. Again, my name is Jay Gense, I am the director in my lane -- my name sign is the letter J for those that care about that. We are located in the teaching research Institute at Western Oregon University and I am simply broadcasting from my office. On behalf of NCDB, I want to express my gratitude to my partners with whom we are collaborating for this webinar, including trans-Helen Keller national Center, and again, this webinar is part of the Helen Keller awareness week, the 30th anniversary, that is amazing. Many of you joining this webinar recognize that deaf blindness is a disability of access, the population of individuals who are deaf blind is very diverse, very need for individualized services. And so, to help build awareness of those needs, NFADB and NCDB are offering a series of webinars on three specific aspects of these individualized services. Last February, we conducted the future of deaf-blind services and the role of intervener webinar. Today's webinar will be focused on improving access to information through technology , and coming in the fall we will be discussing the impact of individualized services and what those services can have, quality-of-life issues for individuals who are deaf-blind. Each of these webinars and all of the webinars that NCDB hosts or supports are recorded and available for viewing through our NCDB website. So, if you want to find those archives, all of them are available. In addition to the accessibility support that Randy shared and identified the physical layout of this Adobe connect room, I also want to point out some of the protocols that we will be using today. And, we are using these protocols, simply because they help to ensure quality participation by everyone, including those that are deaf-blind. One of our presenters, Maricar is deaf-blind. Or maybe participates in the audience who are deaf-blind as well. Some of these protocols that we will be using. First of all, for centers will be identifying themselves by name and/or name sign before they speak. Note that when an individual who is deaf-blind is receiving information through tactile interpreting, extra time is sometimes needed to allow the interpreter to sign the information. Interpreters may also ask any of us for additional time to convey spoken or entering mental information. We are going to have our interpreters switching every 20 or 25 min. or so, so that they can take a break, and during these breaks, we will ask that no discussion take place, conversation will resume once the interpreter switch has been completed. You also may find it interesting to know that there will be two off-camera interpreters as part of this webinar. One to voice for Maricar, the other to provide her tactile sign, we have an interpreter who will be on camera with Maricar sitting, I believe to be right . You also will notice that the presenters have a background screen behind them that offers contrast to their skin coloring. We do that so that people with vision impairments can see the video image more clearly. Again, all of these protocols and accessibility efforts serve to raise awareness of the need for the individualized supports. For individuals who are deaf-blind. So, they all are very important, and we ask that everybody is attending to them. Let me and I express my gratitude, I can, to HKNC staff and offering their time and expertise in helping to design and conduct this webinar in a way that, you know, allows access to everybody that is joining, including those who are deaf-blind. I guess, with that, I will turn this to Clara, the president of NFADB.

Okay, no sound.

Fortunately, you can look at the signing are the words.

Clara, you are on mute.

Okay, this isn't very good, though, because fortunately, you could do signing or typing, but unfortunately, they are doing a really crappy job.

We are picking up somebody's audio, so if you have not muted your phone would you please do so.

Can you hear me or not?

Now we can, Clara, yes.

[ Laughter ]

We had you for a moment, Clara.

Okay, I was not longer muted.

Yes, you're correct, Clara, we can hear you.

Oh, thank God, sorry about my voice. Anyway, going back, I wanted to say that we are very, very happy, and NFADB is very happy to partner with NCDB and HKNC to offer this special webinar about the federally funded national equipment distribution program for deaf-blind. You'll hear from professionals and consumers about all of the benefits of having the appropriate technology for individuals who are 14 and older and who are deaf-blind. This is a special anniversary month in deaf-blindness as we are celebrating not only the 30th anniversary of the Helen Keller awareness week, but it is also the 20th anniversary for NFADB. And in timeline, it sounds like a little while ago, we created this amazing national organization which is the only ones that support families who have a member that is deaf-blind. NFADB has allowed this for pricing leadership and advocacy on critical quality issues that impact individuals who are deaf-blind. This year in particular, we are focusing very heavily on our outreach efforts to raise awareness from the array of individualized support that are needed to create and sustain quality educational and adult services for individuals who are deaf-blind. As Jay said before, this is the second in a series of three planned for this year, which NFADB is cosponsoring together with NCDB. In addition to this webinar, NFADB provides information, resources, and referral services. As well as information throughout our new website. We have a listserv and we have a Facebook group. We are an active member of the national coalition on deaf-blindness and we also have an affiliate program with state family learning organizations, because we really want to grow our network of information as legacy and support. NFADB , our mission is to drive efforts, we welcome our members and those who are new to this community, and encourage you to learn more about NFADB. You can call us or visit our website, which, by the way, will be launched with an entirely new look, we welcome your support and membership. We hope to have in our audience parents, as well as professionals in the field of deaf-blindness, and our friends from the parent training and information centers, thank you for joining us today, and enjoy the presentations. Now, it is with great pleasure, I am going to introduce my dear friend, Joe McNulty, who after 23 years of incredible leadership in our world of deaf-blindness, just retired as the Executive Director from the Helen Keller national Center. Joe very kindly agreed to join us to moderate this very exciting presentation, and the conversations. The microphone is all yours.

This is Joe McNulty, and like the previous leaders have talked about, this is the 30th anniversary of deaf-blind awareness weekend is also 45 years that the center has been missing since. We opened up in June of 1969, and I remember interviewing for [ Indiscernible ] institution with Bob Smith who himself is deaf-blind, those of you who don't know him, he is the second person in United States , next to Helen Keller, to receive a college degree, if years from the time that Helen went to school and Bob went to school. And he is also a graduate of Perkins school for the blind. He went on to become the first to get a masters degree at New York University. When interviewed for the position, I was interviewed by Bob and I communicated with him with block letters print on Palm, and I know, and we'll hear from the panelists themselves in a few minutes, that today, that would not take place. That there are a number of devices available to sighted hearing people that will allow them to communicate with deaf-blind people. And, they have asked me with the greatest change was during my career, and it has been in the area of technology. Technology has opened up doors to deaf-blind people, to access information, to communicate with sighted hearing people, careers are available to deaf-blind people that we did not think about 20 years ago, let alone four years ago. I want to say that to set the stage for the panelists, and I will turn it over to the panelists now have -- to have been introduced by Kathy but I'll ask Dinell to start us off by talking for a few minutes about herself, her daughter, so that the audience knows a little bit about you. Go ahead.

Thank you, Joe. This is Dinell. And, from a name sign, I have very curly natural hair, so that seems to be what people remember the most about me. My original first adventure in life, I guess, was being a music teacher, my degree was in music and I taught school for a number of years and when I became a mother, our first child was born with complications at birth, so she was born, and has cerebral palsy as a result, and that was the beginning of a new life all together for us, and, it has been a learning adventure, all the way, we continue to learn as we go. Breanna is turning, she just turned 18 this year, and graduated from high school. And, throughout her life, we have just, you know, tried to be a good observer, and learn from her. She is the teacher, and she has taught lots of things to a lot of people. And we continue to try to just follow in her footsteps. Throughout that process, again, having a teacher background put me into a unique situation to work with our school teams, and if I looked at my daughter and saw that she was capable of more, despite her severe physical limitations and cognitive limitations and assessing limitations, etc., there is still the ability to learn that we just could not give up on. So, our adventure began starting out with our parent training information Center here in Kansas where we left. It was a world of information to help us get started in understanding the whole process of special ed law, how to write an IEP, where to find those other resources in the network with other parents, and later on learning about the deaf-blind project, getting involved in that. And as a matter of fact, we got involved so heavily that we had to jump in and have been the family specialist for our Kansas deaf-blind project for a number of years . I've lost track. Probably close to eight or nine, I guess. And I also serve on our state assistive technology advisory Council. Again, a lot of knowledge that I have from an assistive technology standpoint came from attending workshops, just doing lots of research, going online, checking things out. And trying to understand what is available to help her have more independent -- on a various number of advisory councils and committees and trying to stay involved with what is new, what is out there. And, some of those resources I have shared with you and we will talk more later. But, I know that we are limited on time, but the chat box to the bottom right, near the top of that conversation, you will see where I have added a link to a little wiki, which is a Google site that I created and in that space, it will say that it is open to the public and you are welcome to go back and look at that later when you have time. There are lots of resources and presentations that I have done in the past about assistive tech G and how you can work with your school team to get the services and technology that you need. And I will be happy to answer any questions along the way as we drove through that. Thanks.

Thanks you, Dinell.

This is Joe speaking again, and I will turn it over to Maricar to get eight reef background of herself just to give a brief -- brief background of herself and what she has been doing up to this point. Maricar, over to you.

Think you, Joe. This is Maricar, and - name is an "M" on the chest and I am the SSP/ volunteer coordinator here at the center. I have actually been here for 17 years, I am deaf-blind myself. I was actually raised deaf and gradually have started to lose my vision due to Ascher's syndrome, type 1. I had a regression of vision loss. And I do love to be busy and keep active, and I'm involved in things such as sports. I have gone running, I ran the New York marathon, I have come skydiving, I have done triathlons and a whole host of other things. So, I love to go to shows. For example, Shakespeare in the Park and things of that nature. I keep busy and do a lot. I guess that is pretty much it for right now.

Okay, this is Joe, and we will go back to Dinell. This years theme for deaf-blind awareness shows an older woman, that is not why I am talking to you, but it is an older woman talking to a much younger, looks to be a family member, using an assistive device, and the woman is deaf-blind and the younger woman is not. Could you please tell the audience when technology became important in your life and your daughter's life? What age was she when you begin to use technology, but she herself in school, and communicating with people on the outside. And, maybe talk about a week in your life and your daughter's life and how you use technology to assist in communication with her and with the general public.

This is Dinell. I think that the beginning of assistive technology for us was soon after birth. Part of it was related to her disability. She was in the ICU for seven weeks, so we were surrounded with technology from the beginning. Medical technology at that point. When he graduated -- we graduated out of the NICU, if you still driven by a lot of medical technology and to this day. Breanna has lost her ability to swallow and cough and gag and all motor reflexes at birth. So, she has a tracheotomy that we have to suctioned frequently because she does not swallow. So, there are little pieces of tech G and everything that we do -- of technology in everything we do which is what keeps her alive. As far as educational technology, it was not too long now, were within a year, I would say, actually, I take that back, while we were still in NICU, reproducing some other physical therapy type devices, AFOs for her feet, those kinds of things, from a PT standpoint that began right off the bat. Within a year, we were doing some early intervention services in our home that would come to our house, we had PT, OT, and speech, and started right away with switches, just simple cause and effect activity where she would hit a switch and it would say something or make a toy go, those simple things. It was a very slow process for her to understand, just the meaning of cause and effect relationship when she hit the switch, something is going to happen. It took her a long time to catch on so lots of repetition and routine along the way. And, it looks like my WebCam just zapped out. Are you still getting my audio?


Okay, just for whatever reason, I lost the WebCam but I will continue. So, the technology and early intervention services started by the age of one. Again, as she would catch on to one thing, it was just always, what do we do next? What is connect path? The next, you know, level, I guess, from there. And, who had been working with the school. Again, they were not really familiar with working with a child like her, and the apparent that have high expectations, I guess you could say. So, it was a constant teamwork that was really important between us, to constantly work together as a team to find out what the next solution was as we continued to advance forward. So, I went to our state assistive technology conferences, I learned what other people were doing, I got ideas from other people all the time. But, I was involved with closing the gap, which is a large international conference in Minnesota every October, large a lot of wonderful things from a lot of great people there. And, of course, the national Center for deaf-blindness, their library is so extensive and has so much information. So we continued and on a daily basis, at this point in time, again, things have changed through the years and some are reflected in the little Google site that I gave you the link to. But, at this point in time, after she was learning about technology, getting through cause and effect, she always read lots of books. We read lots of books to her, but we started out just even copying little favorite books, putting them into PowerPoint, giving her a switch that would advance and turn a page. And, she would hear my voice recorded, reading, those were some early things from a literacy standpoint that she loved doing, and it was probably the only thing that she could do independently, as long as she could hit the switch, she could read a book by herself. So, those were very important, I think, in her early learning stages, of having that independence to read by herself. That continued to end up where we use the computer to make some choices and learn from Linda Burkhart, another one of my favorite titles, I love to look at some of the examples that she gives, and her website is noted on that link that I gave you also. I learned about to switch step scanning, to her Breanna uses a switch to this day, she has a switch interface connecting to the computer, and as long as I create the activity and modify the curriculum and work with the school on all of those modifications, one switch will select and go to do so we -- choices for the answers so they can be comprehensive questions from high school all the way down to, anything could be turned into choice making, so it is very easy to go there. So, one switch will scan through the choices and every time she hit the switch it will go to the next choice and when she hears the one that she wants and doesn't mostly by auditory, then she will turn and go to the other switch to collect it and it tells us what her answer is from there. So, also at this point, we have moved on up to the iPad with it being so convenient, small and easy. Again, the technology has not totally caught up with the computer from the standpoint of using two switch scanning because you're limited with software that was made to do that. But, we do have, there is one more coming out like that, so we are using Go Talk now, which is an app made by the Attainment company which we have found on the iPad which is useful and successful in creating communication boards for her to relay information to us. Receptive language skills are her strength, her expressive language skills are very poor, we found as long as we continue to put things in multiple choice question format, she can go through and we can do with writing exercises, different choices of sentences and she will give you a yes and no. She will blink for yes or make a mouth shaped like an "O", for no, not that those are ideal situations, they are always handy and accessible at all times for us to use. So we do access curriculum, she is included in most of the regular classrooms, academic classes at school, and has been all of her life. So, we just continue to modify the curriculum for her, and continued work on that expressive communication as we go. Did I answer most of all that?

You did. There will be an opportunity for you later on to flush out any of your answers along the way. Maricar, before we have an interpreter switch, let me basically ask you the same question. When you're talking about your background, you shared with the audience that you, yourself are deaf-blind, but that you walk as a deaf person. At what age did you realize that the technology for deaf-blind was needed by you and how do you use this technology during the day, during the week, both at work and to communicate with friends and people in the community for your needs? All I had. -- Go ahead.

Okay, well actually, I mean, technology I think is such an important part of my life and has been for quite a while. You know, when I was a kid, loved technology. These two play all of those video games, like Atari way back when, and I remember the first time I actually even got a computer. It was actually a Commodore, and I loved using it. So, I used that because when I was a kid, I did have vision. And, I also remember watching TV and I would read the captioning, and even used a TTY, I did use a TTY along time ago and use that to communicate with other people, but then later on in life, I remembered that there was relay services and so I would start with the relay services. And use those to communicate with anybody out there in the world. So I have been using technology pretty much almost my whole life. As I said, I have been using a computer and other devices, I use a computer because I had to type reports out in college, that was way back when I had vision but as I said, I have progressive vision loss, so for example, now, well actually during college, in my college years, I had a difficult time and I remember I was unable to see print clearly. And I remember it was a big struggle for me. I actually needed modifications in order for me to be able to access print and to be able to read things. So for example, when reading something on a white background, it is difficult, so I had to make certain modifications, such as the font size of the print, and that wasn't something that I had done progressively throughout life. Actually, when I started to play vision -- when I started to use my vision less,, then I transitioned to using braille. For me, I'm an active person and I'm always busy day and night and so I'm always communicating with friends and family via text, and so I'm using technology everyday. So for me, it is just part of my life and it also helps me to maintain my independence and I also use it just for even enjoyment, just pleasure in life. So pretty much for me, that is kind of summing it up.

Okay, thank you. Let's have an interpreter switch now.

[ Captioner standing by ]

This is Joe speaking. Let me know when you are ready to begin.

This is Joe, are we okay? Maricar, are you ready? Okay, this is Joe speaking. The video was a little bit choppy and delayed, so I was having trouble reading the interpreter, and listening to Maricar. You know, just a comment, you had mentioned that the old days -- oh, I'm sorry. Okay, the voice interpreter, are you connected? This is Joe speaking.

This is Joe. Is it okay if we begin? Yeah, this is Joe. Now I can hear you.

Yes, all good here.

Okay, this is Joe, just a comment for Maricar, you mentioned about the old-fashioned technology of Atari, I remember when I was in the field and use [ Indiscernible ] in a very short period of time. Let me use that as a lead-in with Dinell and Maricar. There were two things, one is that the average person does not really know what available technology is there, particularly for the deaf-blind person. You commented that the school district did not know what to do with drama in terms of a lot of things in life, let alone technology. But, how do you stay abreast of changes in technology, when we all know that the shelf life of some of this technology is a year or two at most? Go ahead. M this is Dinell. I was thinking about the fact that this webinar is being recorded and a few years ago for -- a few years from now or next year when somebody comes back to watch this, so much of this specific technology that we refer to may be old school and often a whole other direction because it does not change just because it doesn't change so prickly, it is absolutely amazing. I have some favorite websites that I just tend to go to, and there are places like, ATIA, the assistive tech industry Association, and Closing the Gap are two of the larger ones in the country that are very good about staying on top of all of the newest, latest and greatest technology available for people with disabilities. I think the most important piece of all of that, again, is keeping in mind that even though I might have been the one in some situations that went out and learned about some of the new things that I felt Michael's work for my daughter, Breanna, just that I felt like would work for my daughter, Breanna, and went back, it was very much a team process and not me just coming in and telling them, you know, try this or do that or whatever. But, staying on top of it and also working with our state assistive technology project, which every state has one, finding out how to connect and network with them is important and powerful because they are a world of knowledge and even though they may not be knowledgeable, specifics about blindness, they are knowledgeable about technology and the whole access pieces very much in the forefront of their mind. So, they are the ones to work within that way. I have also listed other websites on the Google site that I put the link on, so there is a page with my fever resources and pages -- with a few of my favorite resources and pages, there is also a section that is helpful for parents, including things like [ Indiscernible ] and how to go through making a decision for which is the most appropriate assistive technology for your child and then how the whole process through the IEP , you know, how to make it all come together in Nodaway. Both of those are noted on there, and there is more than we can possibly get into in this time.

Thank you, very much. Now, Maricar, let me basically ask you the same question, we talked about the shelf life of some of the technology that is available, but in your case, as you use technology to communicate with the general public, do you find that people in the public don't know how to use that equipment? Do you have to do some teaching your self? And do SSEs know this equipment when you assign them to a deaf-blind person? Go ahead, this is Joe.

Let me think for a moment. There is just so much technology out there right now. I remember working in the communications learning Center and I taught people how to use communicative technology. We have something called the screen braille communicator, which we call the SBC, several years ago, that is now considered old technology, there is much newer, more advanced pieces of technology available to consumers like the iPhone, with the advent of iPhone and various braille displays, really, it is amazing what deaf-blind people can use to access the communication with the general public. So, an individual that uses@can just pull out dust that uses sign, can just pull out your iPhone or a set of [ Indiscernible ] that allows them to communicate back and forth with somebody, face to face, and it is a really important part of the deaf-blind individuals world and their ability to access communication with the public. Does that answer your question, Joe?

Yes, it did very well. Now, one more follow-up question for you, Maricar, is that, when you begin to train SSPs, to you spend any time at all on teaching them the existing technology that is available for them to communicate with deaf-blind people? Go ahead.

This is Maricar speaking. I think that the iPhone with the various apps for face-to-face communication, allowing me to use my braille display and iPhone to communicate, I think that has been used mostly, but let me think about that. Well, I do generally explain how SSPs can communicate with me. And how we can use technology to either text back and forth, usually that is the easiest way. People don't think that a deaf-blind person would be able to access other pieces of technology, they have no idea that we would be able to do that. It's hard to explain that, normally I get the, wow, that is pretty cool. So, that is pretty much how I handled the situation, Joe.

Good follow-up. Thank you peer let ask both -- bank you, -- let's ask both panelists about dreaming of new technologies, now, both of you have very different perspectives, Dinell, from your daughter's viewpoint and from your viewpoint, what, if anything, would you wish for in the area of technology, maybe something that could be developed to help her communicate with the general public and allow her to communicate with her family? Go ahead.

This is Dinell, the only thing that comes to my mind would be a mind reading machine. With these kids that are nonverbal, and they have a lot of inconsistencies, when there are health issues going on and physical muscle tone on some days and not on others, and so many things, there is a lot of inconsistency in just being able to hit a switch or simple things like that sometimes. So that makes it tricky to know and understand what it is that they're trying to tell us, or even what they are understanding, [ Indiscernible ] or expressively. Hopefully something can read our mind and we don't even have to physically be engaged in a way that is difficult. I think the biggest thing is really, assistive technology is a tool , and how we use it is going to make all of the difference in how much it empowers that person.

Good answer. Maricar, from your point of view, if you could change things today, in terms of a new piece of technology that would make it easier for you and the general public to communicate back and forth, or possibly to travel, because I know a little bit about your interest outside of work, what would that piece of the government be? Go ahead. -- What would that piece of equipment be? Go ahead.

This is Maricar speaking. I have two or three ideas. Before I lost my vision, I used to use a TTY. And when I lost my vision, when I started losing my vision, I started relying on different pieces of technology. Video relay, because I love to communicate using my native language. So, I used that to communicate with people but I am now unable to see the screen and have to rely on others to interpret what is going on. I like to communicate using my native language, ASL, sometimes I use e-mail but I don't want to rely on them all the time, text and e-mail, I want to communicate directly using my language. So, my dream would be a robot, for I would just use sign language, they could use tactile sign language, I would not have to rely somebody to always interpret, it would always be there for me, ready to interpret every call. That is kind of one of my dreams. And the second, sometimes, you know, I rely on SSPs, but sometimes it is hard to work out a schedule, I have to book a week ahead of time, set up schedules, people have family, friends, they are busy, it is hard to schedule time. I have to rely on when they are available, so sometimes, I wake up and it is a beautiful day, I just want to get up and go for a run. I would like to just above -- get out of bed and go for a run. Of course, I had to set up SSPs way ahead of time, so I would think setting up a treadmill, a motorized treadmill that would actually change in indoor room into exactly what is happening outside, it would be the same temperature as what is going on outside, I would have a cool breeze blowing through my hair, like a real-life environment, exactly what would replicate outside. That would be my second thing. My third, you know, everybody uses cell phones now. And, you know, you talk on cell phones all the time, but of course, that is not possible for me. I was with a cell phone, I could sign into the cell phone and it would record my signing and interpreted and actually signed invoice for me. Voice whatever I was signing.

Thank you, this is Joe speaking. I hope there are some product development people in the audience, the participants here, or some mad scientist to her listening and writing these things down. They follow question for the two of you, and again, you come from different backgrounds and perspectives on this, but Dinell, what is the most important thing that you want people to know and understand about the role that she plays in your daughter's life? Something that they would take away and understand just how vital this technology is for your daughter to communicate.

I think first and foremost, as I mentioned before, just remember that assistive technology is a tool and we all use tools. I got glasses on right now that helped me free, so I am using assistive technology. Assistive technology can be as simple as a pencil grip, if somebody has trouble holding a pencil. It does not always mean a high-end design. And I know a lot of teachers are afraid of those high-end devices because they have not had training in it. But, just think of it as a tool, and not some big, scary and consultative machine. It will help them in the first place. I always think of the saying about, for a person without a disability, assistive technology makes things easier, but for a person with a disability, assistive technology makes possible. Without technology, people like my daughter aren't going to have any other way to communicate or participate in any way, and assistive technology is vital in that role. She does not have the physical ability to sign, she does not have the ability to [ Indiscernible ] and has limited vision, so all of that is limiting but assistive technology gives her the options and possibilities . With modifications and accommodations along the way, you can make anything happen which is what makes this very exciting.

Thank you. And as I'm listening to you, I am reminded to tell people out there, that there are some fairly simple solutions to some of the problems faced by deaf-blind people and some are much more involved and intricate. Now Maricar, the same question to you. What is the most important thing that you want people to know and understand about the role that technology plays in your life? Go ahead.

This is Maricar signing. Really, technology is very important in my life, or all deaf-blind people, I feel. It opens up communication with the world, either in school, I have a good job now because I'm able to perform my job using technology all day long, and I have been able to advance in my job because of technology. I'm on an equal playing field because I am able to communicate using this technology, it is just opening the world for me. I am involved in different projects and meetings and need to have that technology so I can access those meetings. In the old world I would not have been able to do this, I would not be able to function in my everyday life as a do today. Like, for example, using a GPS to understand what is going on in the environment, I have access to what the environment is which is a really cool feature. Also being able to have constant contact with my family and friends. I have a strong support system and am able to contact people any time. So communication is completely open because of technology. There are some challenges. For example, the technology that we use is extremely expensive. The braille displays are very, very expensive. So, most people can't afford to purchase a braille display on their own and it makes it tough. Very, very expensive. To have your own equipment. Blind people depend on hearing, like maybe an oral book, but for deaf-blind people, we need to either access it through braille or vision. We would need a braille display, and a program that works for us. And the programs are always getting updated. So, there is always problems popping up that we kind of have to work through as new apps become available or new programs. Also, like talking skills and things like that. -- Like talking scales and things like that, those are not available for deaf-blind.

This is Joe speaking. Thank you. Both of you have set the stage for our third panelist, Marcia Brooks who will join us but first, let's take an interpreter break and we will switch interpreters, and as soon as you are ready and settled in, we will let Marcia go from there. So this is Joe, go ahead, Judy interpreter break now. -- Do the interpreter Rick now. -- break now.

[ Interpreter break ]

[ Captioner standing by ]

We are ready.

Okay, this is Joe. Marcia, are you ready? I don't see you on the screen.

Hi, I'm ready but for some reason or other, my camera has cut out.

This is Joe speaking and alternate over to Marcia and for those who do not know her, she is at Perkins outside of Boston outside of Watertown, Massachusetts, and she is the kind of go to person for the national deaf-blind equipment to strip you should program, and when Maricar spoke, she talked about some of the pieces of equipment and both she and Dinell talked about the cost and where to get it, etc. So I have asked Marcia to say a few words about what the NDBEDB is and what it isn't. So with that, I will turn it over to you.

Okay, thank you, Joe, and am so sorry that my camera does not seem to be working after you looked at me for a good part of the webinar. Anyway, it is really a privilege to be with you today and as Joe said, I am here to talk about the national deaf-blind equipment distribution program, and because that is quite a mouthful, we have decided to market it as I Can Connect, which is how I will refer to the program for the rest of my remarks. The national deaf-blind equipment distribution program, also known as I Can Connect, was mandated by the 21st century communications and video accessibility act passed by Congress and signed into law in 2010. The Secretary administers the program to enable access to communication, and each state has its own program. Perkins works with Helen Keller national Center and Perkins is the lead in 15 states, and we provide services to approximately 20 other states. I would first like to talk about is the eligibility for the program. There are both income and disability eligibility related requirements. The eligibility for disability is based on the Helen Keller national tour functional definition of deaf-blindness, and somebody with a progressive discipline related to deaf-blindness is automatically eligible. Now for the income eligibility portion, the FCC defines eligibility based on household income and that means the combined income of everyone in the household which needs to be below 400% of the federal poverty guidelines. That means for example that household of 4 must have a combined income of $95,400 or less. For income eligibility for the program, proof of public assistance or SSI is automatic eligibility for the income requirements. And, basically, the program provides assessment of the eligible consumer, equipment for the consumer, and training and installation of the equipment and training on it. I would like to give some examples of some of the technology that children have received. I Can Connect which includes off-the-shelf products as well as adaptive technology, it includes amplification devices, iPads and iPhones, devices to magnify iPads and iPhones and a wide variety of switches and amounts, for example, a wheelchair mount for the iPad, and it also provides durable cases for people who have difficulty holding the equipment. And then, I would like to talk just a little bit about what would not be approved by the I Can Connect program . I would like to talk about the top items that are requested, and whether all people who are deaf-blind use the same equipment from the program. First, the requests that are not covered by I Can Connect , most often have to do with whether they ate in distance communication. This program is specifically established to aid in distance communications, therefore if something was just enabling face to face communications, it would not be covered by the program. The other example I would like to offer is that the program cannot provide equipment, braille equipment or equipment where American sign language is used, if the consumer does not already have those skills. And as far as what is most requested and distributed, I would have to say iPads , and there's a wide array of equipment to her soft, and as far -- and those are at the top, and as far as equipment that people in the program use, it depends on Egypt to land based on a case-by-case basis, each person's assessment, whether they have any residual hearing or vision, whether they do have either both or individually braille or American sign language skills and whether they have any previous experience with the government which is not required but if you, taking into consideration. One of the things I like to look at for you today is what happens if the request is denied, what do folks do? Is there a process to appeal? What I would really like to stress is that we cannot always get everything for everyone, more along the lines of being there, our responsibility is to serve as many as part. Cash as possible. We do actually have a standard that the FCC uses, a standard of reasonableness, and I have to say that the Secretary has been terrific in thinking through different question whether they are reasonable. And it turns out that it is -- the consumer wishes to appeal, what kind of equipment that Iraq yesterday are asking for or enable, we would consult with the FCC, and as I have said before, have been terrific and if any of you, the consumers don't want to do, they would be able to contact FCC. So housing talked about that, I would like to say, can somebody applies to the program more than once? That is yes, specifically and especially if they're disability changes since they were first served by the program. And if that is the case, they are automatically eligible for a new assessment to see what else might work better for them. And also, if the technologies that have been provided has had any major updates, or if new products come on the market that would really help the consumer, that is certainly something that we would consider. And as I mentioned before, the training that is available to the folks, really varies on a case-by-case basis. For children, we try to be creative, we don't always do the training. If the teachers can be involved and if that is a better solution, but, a lot of folks talk about this program with their friends in other states and as I mentioned, each state runs its own program, but there are really individual decisions made for each consumer who is eligible for the program. So, that is pretty much a good summary of the program and I know that my contact information will be made available at the end of the webinar and I certainly invite anyone with questions to feel free to contact me.

Thanks, Marcia. That was very helpful. A question from me before I turn it back over is, one of the biggest problems that we encountered in getting this program off the ground was the real lack of people who knew how to provide the training. And, could you address that, in terms of what I Can Connect, what their role is in the training of professionals, and the use of the equipment, so that those can, in turn, train deaf-blind people how to use it?

Sure, great question, Joe. Thank you. This is Marcia, and that Perkins, I can speak specifically for the states that Perkins is the lead for. And, I know that in some cases, we have had challenges finding people who are qualified, the program specifically does not, during the pilot, pay for train the trainer, and having mentioned the pilot program, let me just say that we are about to enter the third year of a three-year pilot and the FCC will be writing new rules for the permanent program beyond the pilot and I know there are a lot of people who are already abdicating to the FCC to cover train the trainer cost, but for us, there have been opportunities to have a wide array of trainers, and they work for one of the lighthouse programs, they may, themselves, have a varies more technology company. They are blind, for example, we have a lot of blind trainers in Texas, so we have a lot of folks are low-voltage estate where the consumer lives, and if that is not possible, we have also brought in qualified trainers from other states and that is definitely a way to at least catch up and make some progress in the state, but for the long-term efficacy of the program, we really are hoping that people will find the voices to tell the FCC what is important to them in terms of keeping the needs of the program met.

Thank you. I will now turn it over to Kathy McNulty who opened up, and Kathy, are you listening? Are you on?

I am, can you hear me?

Thank you, Maricar, and Dinell, we will have a question-and-answer session, if any of you have any questions or comments, I invite you to write them into the chat box, but if nobody minds, I would like to start. I have a question for Maricar, and I always love hearing her tell stories of her climbing mountains and running in marathons and all of those things. And, I was just curious, Maricar, are there specific pieces of equipment or technology that you use while you are training for these events? And why you're actually in the event? I was just curious.

So, this is Maricar. Well, let me think for a second. Well, I did used to do rock, running and all of that and there was no special equipment I would use for those activities, it really depended on my SSPs, even for swimming. There is really no special technology or a command for that, you know, because those are physical activities, so I would say no. But as far as does communicating, once again, with the world, yeah, technology that we have talked about. I don't know if that answered your question.

This is Kathy McNulty, yes it does, I was just curious. So, I am checking the chat box and I see that there are some comments. Luz Martinez is wanting to thank everybody for the webinar and seeing how to put together a workshop that may be successful for all, so thank you, Luz for the comment. If there are others that want to write in questions, I would take this moment to highlight that we have listed some resources in the chatterbox. Dinell's to all of the link to all of those assistive technologies is there, the I Can Connect, to get more information, if you need it, the program that Marcia discussed, and also, I just need noticed that Randy posted the e-mail address of Marcia, if you want to e-mail her directly for more information. And I know Nancy O'Donnell from Helen Keller national Center has shared with me that there were two really good videotapes on technology, on scene persons who are deaf-blind, using technology in various services and they are on the Helen Helen national Center website. Randy, if you could help me out with this, it is just simply www.hknc.org, is. To go there, I think that you can find those videos of high quality. And, Marcia just posted her correct telephone number. Okay, I see that somebody else is typing. So, let's see, yes, Jay, thank you, sir is also a lot of technology on -- information on technology and assistive technology for children on the NCDB website and our address is now in the chat box. All right, so, are there any other comments that Annie at our other panelists might want to make before I hand it over to Clara for any closing remarks for her to wrap up? So, a comment or question?

This is Joe speaking. I do have a comment, to follow up on something that Marcia had said, that this NDBEDP is a pilot for us in the community, it is a pilot program and when the FCC started it, they were not sure about whether they were going to continue beyond the pilot, program with independent on its popular usage, and we in the field have expressed a concern about the critical shortage of trainers to work with people who are deaf-blind who want the equipment. In our experience over the past 2+ years have borne that out and I would ask anybody, and the opportunity comes, and the Secretary calls for comment, that they really push -- when the FCC calls for comment, that they really push for a train the trainer models that we have an adequate number of trainers in the field for the needs of the deaf-blind people.

Thank you.

Okay, thanks. So, I noticed that we have a hand raised and also a question, and maybe Dinell , you can help out with the question, can somebody talk about augmentative devices, especially about Proloquo, if I am pronouncing that correctly.

I turned my camera off, sorry about that. It seems that every time that I go to talk, it throws me off. I am taking a hint and make me wonder. I was going to answer at the same time you brought about, but for some reason it is not getting my text either. But, Proloquo is another app that is very popular for iPads and iPhones, it is a good communication app that a lot of people are using. Again, just like any other app or piece of software, it is not the perfect one for everyone. So, that is why it is important to work with your speech path, even your OT, you know, when it comes to how they can access it with their single -- their finger, there's a lot from a language standpoint that makes all of the apps different from each other, and again, that team working together to come to the conclusion of which one is the best app for communication for that child is really vital. I frequently see people automatically go to us -- go to a particular popular app and assume that it is going to be the best but that does not make it the best one for that child. So keep that in mind. I think one of the reasons that Proloquo is so popular, it was the first communication app that came out for iPads and iPhones. So they really set the bar high, they started something very exciting. It was not too many years after that, though, there are lots more out there that have variations on how they work. So, looking at the different attributes of each of the communication app, and knowing the differences and understanding what that child really needs will help you determine if Proloquo is the best one, or if you need to look at a different one. And there are some websites out there, too, that can compare some of those communications for you. I don't have it at the moment for you, but what I will do it on the Google site that I shared with a lot of good information, I will add a page that specifically addresses those apps, and maybe that will provide some helpful information there.

Thank you, Dinell, I think that is great and our listener is appreciative of your response as well. I know Marcia, you have your hand raised, but Cindy Robinson from Arizona asked Joe a follow-up to his comments so if it is all right, Joe, if you could respond to Cindi's question, and Marcia, whatever comment or question you have, we will go to you next.

This is Joe speaking. I will answer it by differing to Marsha -- Marcia because she can answer that. It has to do with my referring to the trainers and the train the trainer model and Cindy asked if it also refers to assessors, so you might be able to refer to that as what is allowed or missing in the NDBEDP so far.

Okay, this is [ Background noise ] four at Perkins, I hope I understood the question correctly and let me know if not.

This is Cindi, correct verify? I mean the people that use the assessments.



Sure. This is Marcia at Perkins. Typically what we find is that the same person generally does the assessment, makes the equipment recommendations for the consumer, and then installs the demand and the -- installs the equipment and trains the consumer on it, and certainly that is the best approach with continuity. There have been a few cases where we have needed to be creative, and if we were able to find somebody who could do just the assessment or just the training, we would certainly try to make that work as well. Does that answer the question?

This is Kathy McNulty. I think that Cindi is typing, so we will find out. I am going to give folks a few more minutes to write in any additional questions and while some folks might want to do that, I have a question for Randy. Randy, would you have that link for the evaluation survey that we created? And, would it be possible to put it into the chat pod or notes pod?

I would, Kathy, but I don't think I received it.


Let me contact Mark while we are finishing up.

Well, Randy, this might be one of the days that, you know, our attendees get lucky because I know that most people don't like doing the evaluation. Our evaluation specialist, a wonderful evaluation coordinator, [ Background noise ] and I think everybody is [ Indiscernible ] about doing the evaluation. We will just have to do it the next time.

Kathy, this is Robin, and I have actually access to Mark's account so I could pull it and put it on there if you want.

That would be great, Robin, and when you see that, if those of you in the audience could click on that when it appears, it is a very, very short survey just asking your opinion on how this went but it helps us a lot on our grants and whatnot, if you could take a minute or two to do that. Okay. So, all right. Thank you, Jay, for your comment, I ditto, might thanks to everyone on the call. So, we are almost there, we are almost at the 90 min. mark, so I think now might be a good time to get back to Clara, president of NFADB for her closing remarks, and then I think we will wrap things up. So, Clara, it is to you.

Okay, thank you. Can you hear me?

I can.

Okay, this is Clara, again, an want to thank all of the presenters, they have been absolutely wonderful, shared lots and lots of information, we want to share our thanks to our very special moderator, and thank you for a wonderful job. This was an exceptional session, and I think that a lot of very important information was shared, and you will have all of the resources available, you know, as was specified in the chat box. I also want to remind you to visit and navigate the NCDB and NFADB websites. You'll get a lot more in her mission on there.Technology is advancing very rapidly and making a dramatic change in the life of all of us, and mostly in the life of individuals who are deaf-blind . We know that they can utilize much better, all of the equipment in order to better their lives, and their social, you know, skills in general. So, okay, we thank you all, and let's keep the conversation going. I think it is very, very important, and we will see on the next webinar. Thank you so much.

And this is Kathy McNulty. Robbin Bull, you are the best. That link is in the chat box, so we will leave that room open for a minute or two, if you could take the time to click on that, it would be great. Thank you all very much. Have a wonderful day.

And goodbye, this is Maricar.

[ Event concluded ]