Community Voices
The Importance of Having the Disability of Deaf-Blindness "checked" in the IEP
Gloria Rodriguez-Gil
California Deaf-Blind Services
2011-03-02
As I was preparing for a couple of presentations on deaf-blindness (i.e., definition, characteristics, challenges, etc.), I was reminded of the fact that the great majority of the students who are deaf-blind have additional disabilities, more than 90% according to the National Consortium on Deaf-Blindness Practice Perspective titled Children Who Are Deaf-Blind. Consequently, these students would be classified in their IEPs under the category of multiple disabilities. [Read More]
[Read More]Thoughts on Systemic Needs of a Quality Deaf-Blind TA Project Network
D. Jay Gense, Director, NCDB
Numerous conversations have surfaced recently on how we construct an “improved” national Deaf-Blind Network. Improving the Deaf-Blind Network’s connectivity and productivity ran as a central theme for the Fall Deaf-Blind Leadership meeting, held in Washington D.C. on November 18-19, 2010. For example, OSEP Project Officer, Dr. Anne Smith, opened the meeting with remarks about the “New Normal … Doing More With Less.” She emphasized several points about this new normal, identifying the present as a time to “explore alternatives to old ways of doing things … challenging the status quo.” Read the complete blog post.
Current Generation of Tablet Computers and Deaf-Blindness
Gloria Rodriguez-Gil
California Deaf-Blind Services
How can some of the children who are deaf-blind take advantage of the current generation of tablet computers? My colleague Cristi Saylor (DHH teacher) brought to my attention an internet news clip showing an application software, or an “app”, that a father created for his son whose communication skills are emerging but who cannot speak. The app is called “Verbal Victor.” Read More
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Young Adult Advocates in DC
My name is Corrina Veesart and I am completely deaf with vision that allows me to see just a few inches from my face when signed to. My eyesight is rapidly growing worse and visually reading sign language has become more challenging to the point that I am now in the process of transitioning to tactile sign language. Despite a long history of struggling in the school district to get the services I needed to succeed and dealing with my deteriorating vision, I was blessed with the thrilling accomplishment of finally graduating! On May 22nd of 2009, I received my A.A. degree in General Studies from Cuesta Community College in California. Hallelujah! Now what? I have been itching to spread my wings and do something meaningful with my life. Being deaf-blind can't stop me! [Read More]
I have always known that I want to help people somehow. I have a strong passion for seeing the lives of my fellow human beings improve. Growing up I have never really had much interest in political engagement although my father is very involved in political activism. I've thought of being a Psychologist, Recreation Therapist, or Peace Corps volunteer. I had these big ideas, but needed somewhere to fulfill them. Maybe I did have a bit of a political or human rights spirit. Last June, my Helen Keller National Center Representative, Cathy Kirscher of San Diego, sent me the application for Deaf-Blind Young Adults in Action Participating in the Policy-Making Process (DBYAA). This is a weeklong advocacy training program in Washington D.C. I read over the application carefully, and thought it looked like something I'd be interested in. Here is a path to humanity, I mused. DBYAA did seem to offer the perfect possibility to get out in the world, learn about issues that immediately affect deaf-blind individuals, and go somewhere new all on my own. Okay! Great!! I took advantage of the opportunity and applied. I took it to heart on my application. I stated my education, goals, experiences, accomplishments, and awards. I was amazed to be accepted because I'd never been very involved politically as I've mentioned earlier.
I arrived in Washington D.C. late at night: eager, nervous, and wanting to impress my coordinators by showing my best abilities. There were six others, Cohort #1, who had participated last year. They were coming back this year to be our mentors. They would help us learn from their previous experiences with DBYAA. This year's group was Cohort #2, a new batch of students who all have potential to become leaders. All 12 of us were deaf-blind young adults with the same goals in mind. We were all in our 20's, many of us still working on our college educations, and we all wanted to make a difference in the world. We were all here at Gallaudet University's campus in Washington D.C. with the same common goals in mind! Wow! I couldn't believe it. It was like nothing I'd never experienced, and I put my whole soul into trying my best to learn all I could.
We were in classes the first two days learning about different bills, laws, and movements that affect the lives of deaf-blind people. We learned about four different issues that are critically important to the deaf-blind at large. We could each pick one or more of the issues to advocate for in front of representatives from the Senate and House of Representatives. My issue was Support Service Providers (SSPs) because of the national need for more support for deaf-blind people. I would advocate for the need for trained and qualified SSPs when we met with various Senate and Congressional personnel. First though, during the second day of classes, we role played to help us prepare ourselves so we'd know what to expect.
On the third and fourth days, we got to walk through the enormously huge buildings that housed people who have the power to help make big changes. It was such a thrill! As I walked along with my teachers and fellow students, my interpreters would describe what they saw around me. An office for Alaska had a huge bear's head hanging over the desk and I got to go up to touch it.
Probably the most exciting thing that happened was meeting Lois Capps personally in her office. My group had been meeting with different Senate and Congress people explaining each of our individual issues mostly as groups (we met with Dianne Feinstein, Barbara Boxer, Matt McMahon, etc.), but this time I got to meet the congresswoman who is actually from my home town! I had heard many good things about her. I hoped that she could help me make significant changes both on a state level and a federal level to make an impact on the need for qualified SSPs. Amy Parker (our instructor) and two interpreters came with me as support but I managed the meeting on my own. I was really nervous, but I tried to take a deep breath and relax. We started out with my interpreter informing me that she saw a picture of my home town of San Luis Obispo on the wall of the office. I introduced Amy and my interpreters. I let Lois Capps know that they were there to support me, and she introduced her Legislative Assistant, Aaron Shapiro. We were all there to support each other, she said. After some light chit chat about her knowing my father, I calmly explained my SSP issue. I proposed that I thought it should become law that SSPs for deaf-blind people be added to the Americans with Disabilities Act as a needed accommodation just like it is law that all deaf people be provided with interpreters. Lois Capps was so receptive, open, and listened with interest and attention. She said that she would be happy to work with me on this cause. I was so excited, proud, and happy! I was starting to feel like this DBYAA legislative experience was going to help me find my place in life. Here I was, a new college graduate, with the zeal to improve the lives of others. I didn't want a future generation of young deaf-blind people to struggle as much as I did throughout my education. I was beginning to feel so inspired and moved by this close contact with such a determined, spirited, and talented group of deaf-blind young adults. We all worked as a team, and I felt that with our combined efforts, we had power to do something big! Together we can make the mountains move! The key is the right support! It was nice to know that I could collaborate with Lois Capps.
We returned home from Washington D.C., to begin working on our action plans, part of the required coursework. A month after we returned home, our coordinator, Suzanne Ressa, contacted us with big news! We were invited to go back to Washington to attend the Americans with Disabilities Act's 20th Anniversary celebration at the White House. I was shocked and so excited. It was a great honor to be asked to participate in something like this!
I arrived once again late at night. We were all excited and full of spirit and stayed up chatting and catching up with each other. We arrived on a Sunday and the very next day, July 26th, was the big day! That morning we went by taxi to the Capitol building to watch the House of Representatives pass the Twenty-First Century Communications and Video Accessibility Act (H.R. 3101). Mussie Gebre from our group had worked on having language addressing the technology needs of people who are deaf-blind put back in the bill. Mussie worked hard and his petition helped to get the language restored to the bill. Our advocacy made a difference! It was such a proud moment to know that our efforts had paid off!
FINALLY we were off to the White House! We arrived and had to go through a long security check-in line. At last we stood on the big, green lawn in front of the White House. It was dazzlingly bright. We took group pictures in front of the White House before everyone settled down to sit in white plastic chairs. My group sat in a row near the front. My full attention turned to my interpreter who started describing as things were being set up for the speeches. Finally everything was still. I couldn't follow all of the speeches, but when Patti Labelle sang, my interpreter translated so beautifully in ASL and the main words I understood were "have a new attitude, have a new attitude, have a new attitude!" It seemed to be the chorus of the song she was singing. Here we were at the celebration for the Americans with Disabilities Act's 20th Anniversary and someone was singing about having a new attitude. We could start anew! All of these people were here together! Let's have a new attitude! Let's work to make changes! Let's do it! I wanted to reach out and give the whole crowd a giant group hug!
I had my interpreter take pictures for me, and she especially snapped a lot of pictures when President Obama made his appearance. After his speech, he walked among us shaking each of our hands. I was so moved to be a part of that crowd all itching to bring on a new attitude, a new life, a new reality for those with disabilities or as I prefer to call it, "special needs"! To me, we aren't disabled - just have unique needs that make us special!
If you, or anyone you know, would like to be a contributor to Community Voices, please email us with your ideas at info@nationaldb.org. [Read More]
DB Youth Building Bridges to Community One Vision at a Time
Michael Fagbemi
Eddie Madera
The National Consortium on Deaf–Blindness (NCDB), collaborated with seven state deaf–blind projects (FL, GA, KY, MS, SC, TN, TX), the American Association of Deaf-Blind, the Helen Keller National Center, Georgia Vocational Rehabilitation and PEPNet to host the fifth annual Southeast Regional Family and Youth Workshop in Tampa Florida. Twenty young adults who have aspirations to pursue a college education or gainful employment were inspired by the presentations given by their youth mentors. [Read More]
These mentors, who are also deaf-blind, were former participants in previous youth workshops. They were active in the planning and delivering of the presentations and team building activities and were instrumental in orienting the new participants who were uncertain as to what to expect. The mentors shared their rich experiences while touching on the themes of self determination, community presence and building social networks. The families marveled at the events, captured in power point presentations, of last year activities of the mentor group. These included the Washington D.C policies and advocacy learning experience, the international Deaf–Blind conference in Uganda, the experience of training at the Helen Keller National Center and an eye opening trip to a village in Costa Rica that is home to a number of children with sensory loss. The mentors shared their commitment to educate, inspire and motivate youth and families. Divya Goel, a presenter from Florida who currently attends college, asked parents “to raise their expectations of teachers and of themselves if they wanted to give their children the best opportunities to succeed”. Winfield Sainpreux wanted families to know that having a disability that affects vision or hearing should not be the reason that people are excluded from opportunities to earn a good living or improve their quality of life. Winfield, who shared his artwork thru a power point presentation, asked families to remember “we all have hidden talents, but need the opportunity to uncover them”
Eddie Madera, a resident of Georgia and a young adult participating in the workshop, described what the term self determination meant for him. “You have two paths you can choose from as you make decisions about your life; the rough mountain with unpredictable peaks and valleys or the smoother path that is easier to travel because there are fewer obstacles to overcome. The danger of choosing the easier path is you might regret your choices when you become an adult because some of your decisions might not improve your quality of life. Self determination to me is finding the path that takes you upward towards the top and not taking the path that is flat, never changing and appears to never end. Self determination is about progress and what you do when obstacles are in your way. The self determined person doesn’t worry about the challenge. It is the opportunity that a self determined person has been anxiously waiting for their entire life”.
One of the most pervasive challenges facing deaf-blind individuals is the issue of access. It can be lack of access to information, access to physical spaces or a lack of access to community around them. Jamie Pope (AADB) and two youth presenters stressed the importance of Support Service Providers (SSP’s) to the independence of deaf–blind people. A trained SSP can typically provide the individual who is deaf-blind with access to and information about the environment. The benefits of this service for the deaf-blind person include an increased ability to weigh options, to make decisions and to exercise personal preferences. Support Service Providers for this meeting were recruited from various interpreting programs. They provided mobility, interpreting and facilitated communication supports for the twenty youth participants and their family members, many of whom were unaware of the availability of this service. It was important to learn that there is a national effort to familiarize and educate state and national legislators about the issues impacting deaf –blind individuals. Ashley Jackson, a resident of Tennessee and aspiring social worker, commented on the value of SSP’s in increasing independence for deaf-blind persons.
The transition of young adults to school or work is a long and winding road. The stories shared by the presenters and participants captured many of the uncertainties and challenges that come with this terrain. Young adults have a unique perspective of these challenges and what tools they made need to succeed. Clearly, access to established networks, increased opportunities and raised expectations are just some of the tools needed for success. Eva Marie Baird a resident of South Carolina summarized it best “I have learned that our collective goal is to learn from each other and our individual goal is never give up on our dreams. If teachers and parents expect more, we can do more.”
If you, or anyone you know, would like to be a contributor to Community Voices, please email us with your ideas at info@nationaldb.org
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Skyways: A Deaf-Blind Man's View from Above by John Lee Clark
I'm sure there are many who say they love the city of Saint Paul, Minnesota, but for me to say that would be an understatement. That's because living anywhere outside of downtown Saint Paul would be like being in jail. I live in the heart of the skyway system in downtown (one of the four largest networks of skyways and tunnels in the world), and for me it is freedom. You see, I am both deaf and blind.[Read More]
Many deaf-blind Americans live within invisible prison walls, not because of deaf-blindness itself, but because many places don't have the transportation, services, and access that would make it possible to be independent without hearing and sight. So in many places, deaf-blind people feel stuck, just as those without legs would feel stuck if there were no wheelchairs and no sidewalks outside. But Saint Paul isn't one of those places that are bad for people with slightly different bodies. Minnesota has some of the nation's very best transportation services and other apparatus for accessibility.
The skyway system, though, is the frosting on the cake. It is so much easier to get around through skyways than by crossing streets outside. It is not safe for me to cross a street on my own, so to do that I must hold up a card and hope someone will come along soon, see it, read it, and then offer to help me across. That works, and I do that if I am traveling beyond the skyways, but it's so wonderful when I don't need to hold up that card and wait in the cold.
John Lee Clark
(Photo by Taras J. Dykstra)
Thanks to the skyways, I can experience the same ease that most people do. Most things out there are designed for hearing and sighted people's convenience. If you are in that group and feel like having coffee, you can drive to a nearby coffee shop. But many of my fellow deaf-blind citizens don't have that privilege. They have to call paratransit to book a ride three days in advance. Imagine how bad their hankering for that mocha latte must be by the time they get there! But I can just get up and go, take the elevator down from my apartment on the thirty-second floor to the skyway level, and then tap the tip of my white cane on the variously textured surfaces of buildings along my route on the skyway system.
After living here for five years, I know downtown Saint Paul like the back of my hand. But the landscape in my mind is very different from what you might see and store in your mind. I wouldn't be surprised that there are many ugly sights such as those bland yet garish logos of fast-food chains.
Perhaps the skyways feel claustrophobic to some, and to others they may just be another gray patch of corporate America. But for me, they're more than pure beauty. They're freedom.
Editor’s note: This essay first appeared in Nightingale, K. (Ed.). (2009). 2010 Saint Paul Almanac. St. Paul: Arcata Press. It is reprinted with permission from John Lee Clark.
[Read More]Successful Collaboration Between Parents and Professionals
Gloria Rodriguez-Gil is an Educational Specialist on the team with California Deaf-Blind Services. Read her reflections on the importance of creating respectful alliances with families on the CDBS website.
[Read More]A Mother Offers Her Tips on the IEP Process
Edgenie Bellah works as the Family Specialist with the Texas Deafblind Project and is also mother to Jonathan.
It is hard to believe that in April we will have the last and final IEP meeting for Jonathan. The journey thus far has been interesting and one that I cherish very much! It has been worth all we that we have done to help Jonathan squeeze every bit of benefit out of his time in Special Education and it will be exciting to watch as he ventures into adulthood. Here are just a few of the things that we have learned along the way and would pass on as advice when working with your IEP team.
- Know the process. You don’t have to be a legal expert, nor do you need to be absolutely clear on every step in the IEP process but you MUST feel confident in your understanding of how the process works. That means understanding that the process has its own limitations such as time, paperwork and funding. When parents understand this, they are in a much more powerful place to make the process work for their child.
- Focus on your responsibilities more than your rights. While the safeguards we’re given under IDEA and under state regulations are important, exercising your responsibilities is much more important.
- Strive to be an effective partner. The relationship you have with your child’s team is a long-term one and a lot hinges on how well you can be an effective partner on the team.
- Be clear on your principles, beliefs and vision for your child’s future and let them guide you on every decision. Knowing what is important to you will help in creating more effective communication with others. Decide when you need to be open to new information and opposing positions, when to compromise and when to stand firm in your position.
- Value everyone’s perspective on your child’s team. While you may totally disagree with someone on the team, chances are very high that they have something of worth for you to at least ponder. It is a little known fact but school folks are often just as nervous as you are!
- Involve your child as much as possible in the decision making. This will look different for each of our children but it has to be done in order for the team to “get” the real issues and develop our children’s self determination skills.
- Don’t go it alone. Whether it is your spouse, sister, friend or coworker, make sure someone is able to attend the meeting with you. Make sure they know your child and are clear on what your positions are on the issues. Also take the time to talk about what you want their role to be: a quiet supporter, a second person to help make sure you understand all the important stuff, a clarifier of issues, etc.
- Be involved in your child’s school community. Don’t just show up for the IEP meetings or for meetings solely intended to discuss concerns. Volunteer in other areas and make sure your child is an active participant in school activities.
- Celebrate with your child’s team. So often we’re focused on all of the things that need to be improved that we fail to take the time to celebrate what is going well and the progress the child is making. Bringing food to meetings, writing thank you cards, etc. go a long way in creating an atmosphere where the team feels appreciated and motivated to do whatever it takes to maintain a quality program for your child.
Moving to Supported Living
Jackie Kenley, a former Family Specialist for California Deaf-Blind Services, shares her experience of daughter Laura's transition to adult living.
Laura Kenley is now an adult even though she only weighs 92 lbs and is several inches short of 5 feet. Laura was diagnosed with CHARGE syndrome very early and has retinal colobomas which cause her to have only limited vision in her right eye. She is profoundly deaf since birth and has had two open heart surgeries to repair Tetrology of Fallot and Mitral Valve problems. Laura has vesitibular problems and uses limited sign language for communication. In spite of all this, our daughter Laura, 24, has been in supported living since Feb 15 of this year. She is doing amazingly well and I am very proud of her.
We have not seen "behaviors" worsen rather she is doing quite well and learning and growing. I think she enjoys living with women her age and has adjusted to her new home. The energy of the home is full of happenings as Laura has a non disabled roommate, a disabled roommate and staff that works with her in the home.
I think a huge part of this being successful is that Laura’s supported living is through an agency we know well and trust. She has this supported living and her day program through the Arc of San Francisco. We worked on her supported living program literally for several years and are still having on- going trainings for her staff-that part will never end. The house we have rented is a normal rental house and fortunately has a great landlady who loves supporting Laura in the community.
Laura has had some medical "blips"-a fractured foot and the usual bad cold and cough during the winter but otherwise has been stable with no major seizures for over a year. She is now taking liquid calcium with vitamin D3. Her other meds are a small dose of Paxil, which she has taken for years, and Valproic Acid for her seizures. Her self injurious behaviors have included eye poking and pinching herself and a very occasional bonk on her head.
Laura’s roommates and staff all help her in her world and learn from her as well as supporting her. Laura works hard to function well in her world and seems pleased that this has been rewarded with a degree of independence. Laura’s family is very proud and enjoys visiting her in her home which is about 15 minutes from her parents.
Crystal Morales Describes Meeting President Obama in the Oval Office
Crystal Morales is from Austin,Texas. A recent graduate of East Central University in Oklahoma, she has a B.A. in Human Resources with an emphasis in Vocational Rehabilitation. She is an accomplished musician and composer and an experienced presenter on the topic of deaf-blindness. In June, she was part of a course, Deaf-Blind Youth in Action, at Gallaudet College in Washington, D.C. While in D.C., the group met with various members of Congress, toured the White House and were invited to meet with President Obama.
An Experience of a Lifetime
As a part of our wonderful journey to Washington D.C. we had the opportunity to meet with many important decision-making persons from the House of Representatives and the Senate. Just being in those buildings and communicating with those people was quite powerful and changed my mind on how our government and its representatives work together to create change for all of us.
Another part of our week long journey was a tour of the White House itself. Walking with my fellow classmates from the Deaf-Blind Youth In Action program and our interpreters and teachers up to the White House was very moving for me especially knowing that the last deaf-blind person to meet a President was Helen Keller. We walked through the East Reception Room where most people would wait to meet the First Lady. A secret service agent explained to us that former first ladies’ pictures were on the wall. She then explained each room we arrived in and some of the contributions made by those who have lived in the White House previously. We were allowed to touch items in each room very carefully. We saw the Green Room, the Red Room, the Blue Room and the State Dinning Room. In all of its grandeur, we tried to get as much description as possible from our interpreters and teachers. We calmly traveled around to the Vermeil, China and Diplomatic rooms before reaching the East Room. When we arrived there I looked to my left and saw what looked like a harpsichord which I found out was the White House Piano. I looked to my interpreter and we both were smiling since many people know I am a composer and musician. The agent told me that I could play a note if I wanted. I told her I couldn’t because I was so nervous and was intimidated by it. She told me again and I just could not resist. I walked calmly over to it, touched the top of it and then the highly-polished keys and played my favorite jazz chord with a small melody above it. I just let the chords hang on and listened how it sounded in the big room. I just stood there for a moment in shock as the agent told me, “Stevie Wonder played that piano.” I just could not believe what I was told! I was in shock all day. Not many musicians get the chance to play the White House Piano! What an honor for me! The agent told me that it was a one-of-a-kind Steinway made for the White House. It had three golden eagles that support it off of the floor with beautiful red felt inside.
After that wonderful experience we retreated to a local restaurant while we waited to return back to the White House to meet President Obama. While waiting, we were so nervous that something would come up where our visit would be canceled. But it wasn’t and we were all thankful. We approached the East Gate where we went through security, got our passes and proceeded to walk up the driveway and into the reception office to wait our turn to meet President Obama in the Oval Office. We visited as a group with our interpreters, staff and teachers trying to imagine what it would be like. We were called by the agent to walk in a line down the hallway and towards the Oval Office where President Obama was waiting for us. In the small hallway, an entry way was visible where one by one we walked into the Oval Office to meet President Obama personally.
My interpreter introduced herself and then President Obama asked me my name, where I lived, where I went to school and how I liked Austin. He said that he liked Austin and liked to visit there. He then asked me, “Who is your buddy with you?” meaning my guide dog Umbro. I told him that he was Umbro and that he is almost 6 years old. He then reached down and petted Umbro and said, “Umbro is a good boy!” He also visited with the other dogs in the room, Jerry and Spencer. President Obama said “I wish my dog behaved as well as your dogs, he is still a baby.”
It was then time to gather as a group for a professional photo with the President. President Obama then let everyone know that he was proud of our efforts in D.C. and that he supports the Helen Keller National Center for what they are doing for the deaf-blind community. We then took the group photo and shortly after I began to make my way out since the agent told us to start heading out of the office. I didn’t realize that the President was still visiting and saying good bye to the other students. My interpreter and I started to turn away and President Obama called my name, “Crystal!” He made an effort to call me back into the room to say good bye and wish me well in the future. I just wish I was able to hear him speak. We shook hands for the last time and I said, “Thank you very much” and proceeded to walk out of the Oval Office into the hallway where we were all in shock after meeting the President and getting to visit personally with him.
What an amazing experience for us all, a once in a life-time event and we are all so proud to be the first deaf-blind group since Helen Keller to meet the President and to be the first disability group to meet our new President of the United States of America. We are all so honored.
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Helen Keller Fellows reflect on NCDB Topical Conference
Nine Helen Keller Fellows attended the NCDB Topical Conference in Cincinnati in May, 2009. Read from three of the Fellows as they share their thoughts and impressions.
As I moved through my graduate program at Hunter College and became involved with the Helen Keller fellows this year, deaf-blindness has shifted from a vague concept to an emerging career. Attending the NCDB topical conference provided a welcoming entrance into the deaf-blind community at a national level. Project leaders from across the country and leaders in the field provided a warm and encouraging reception throughout the week. Within the walls of the classroom, it is easy to lose perspective; meeting individuals working at the state and the national level whose work is driven by meeting the child’s needs was refreshing and inspirational.
I could never have imagined the opportunities that would emerge from meeting such driven individuals. I return to my own classroom with a new network of support filled with talented leaders in the field providing resources to help drive my own practice forward. Thank you to the passionate leaders who have helped create such a memorable experience.
Hilary Hodes, Hunter College
I knew that it was an honor to be chosen as a Helen Keller National Fellow but appreciated it even more after attending the NCDB Topical Conference. I didn't know for sure what to expect out of the conference but can say that I got way more that I could have even asked for. Getting to know the other HK Fellows as well as many state project directors and other leaders in the field was a wonderful and treasured experience. I am thankful to those who had the vision and put the wheels into motion for such an event and program to become a reality and for allowing me to be a part of it. I look forward to meeting everyone again and continuing to work with each of you.
Jo Ann Malone, University of Southern Mississippi
I write with complete appreciation for the opportunity I have to be part of the Helen Keller Fellows, and to have had the chance to attend the recent NCDB Topical Conference. I left the conference feeling inspired, motivated, and more alert to the needs of the deafblind population as a whole. I also acquired new friendships, collaboration possibilities, insight, training, and a greater understanding and appreciation for what other leaders, in their various positions, across state boundaries are doing to facilitate lasting and meaningful change. I look forward to the future and the chance that I have to be a contributing part of this community.
Jennifer Hayes, Utah State University
For more information about Extending a Legacy: Helen Keller Fellows Grant visit the website at http://www.helenkellerfellows.org
[Read More]Kat Stremel on her new Cochlear Implant grant and Lena Technology
The new cochlear implant project, Influencing Outcomes for Children who are Deaf-Blind with Cochlear Implants, is now referred to as CI-2! This new project will continue the assessment process for children under 8 years of age begun under the CI-1 grant, but the major focus will be on intervention to improve children’s progress with the cochlear implants and developing individualized intervention strategies.
Twenty state deaf-blind projects have agreed to participate. Cincinnati Children’s Hospital and Medical Center and Eastern Carolina University are partners in this new project with The Teaching Research Institute. Look for a new brochure coming soon. Our new research activities will be in full operation beginning this summer. An exciting phase of the study will be the use of the Language Environment Analysis (LENA).
The LENA is the first automatic system for measuring key elements of children’s verbal language and their learning environments. This technology is a remarkable tool for parents, interventionists and researchers. The LENA Digital Language Processor (DLP) is able to record up to 16 hours of conversation between children and their parents, teachers and nannies in their home or school environments. For children who are learning to listen or who do listen to speech, talk is tremendously powerful. Research shows that the number of words that children hear is one of the greatest tools that parents can use to develop their child’s language and intellectual skills. The technology includes an analysis component so that hours of conversation can be analyzed across number of words used by parent, by the child, the turns of conversation, the interference of noise and the presence of television. The different patterns of talk and further analysis of the child’s speech development and language are possible. It is critical that parents of children who hear know they are talking enough with their children. This is especially true when the child is fitted with hearing aids or a cochlear implant. Data show that many parents think they talk to their child much more than they actually do. We feel that this device can serve as a critical intervention phase in addition to new intervention strategies for children who are deaf-blind with cochlear implants. For additional information contact Kat Stremel or go to see this article by Kat in the Lena newsletter. Visit the Lena Foundation website.
Randy Pope of AADB talks about Deaf-Blind Youth and Facebook
Facebook and Deaf-Blind Youths
By Randall Pope - American Association of the Deaf-Blind
It’s amazing how web technology has evolved in the past few years. Even more amazing is that deaf-blind youth are keeping up with the latest when deaf-blind adults like me are trying our best to keep up with them. The latest trend of deaf-blind youth is the fast-growing social networking site called Facebook. With over 200 million active users, it’s no small wonder that young people who are deaf-blind want to join the bandwagon.
What is Facebook?
Facebook is a free social networking website where anyone with a computer, laptop or even a cell phone can socialize, show pictures, join specific groups, send messages, share videos, and do much, much more to connect with others. It’s similar to many deaf-blind email lists but is on a much larger scale. In fact, some deaf-blind youths have already set up their own special groups.
AADB on Facebook
The American Association of the Deaf-Blind (AADB) very recently launched a deaf-blind youth group on Facebook. This will be a special group for people between the ages of 16 and 25. Our goal is to bring deaf-blind youth together for socializing, networking, and interaction with each other. The list is closed to the general public, and open by invitation only. This is to ensure the safety of the teens and youth who participate in this group. We only accept deaf-blind youth between the ages of 16 and 25 to join the group. Currently we are developing an age verification system.
People can also search for AADB itself on Facebook to meet other people through that site. The AADB site is separate from the deaf-blind youth group. People can simply type “AADB” in the Search engine and go to that site.
People will need a Facebook account to join the group. Once they have an account, they can use its search engine to find the AADB DB Youth group and sign up. Or people can send a friend request to randy.pope@aadb.org and I can send an invitation to join upon approval. In the meantime, we are looking for a catchy name for this group. If anyone has any questions or suggestions, please contact Randall Pope at randy.pope@aadb.org.
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