Spring 2017

Volume 7, No. 2

FROM THE EXECUTIVE DIRECTOR’S DESK

        It’s hard to believe but HKNC is celebrating its 50th anniversary throughout this year - a significant milestone in the history of services for and with individuals in the United States who are deaf-blind.  This is a time to reflect on where we’ve been and all we have accomplished.  It is also a time to make it clear that our focus is squarely on the future. We won’t be satisfied until all deaf-blind individuals in the United States, young and old, have access to opportunities to live a full and empowered life equal to that of their hearing sighted neighbors.  We remain committed to this mission and want to honor and thank everyone who has contributed to our growth and success, and invite others to join us and be part of the change going forward.  To celebrate this special year, numerous activities are planned that will incorporate the 50th Anniversary theme.  The first event happened in January -  a Kick-Off Breakfast for HKNC’s signature fundraising event, Helen’s Run/Walk 2017, which was held April 23, 2017, in Sands Point, NY.  At the breakfast, a new HKNC 50th anniversary logo was unveiled.

        The special events being planned during 2017 include:

  • On APRIL 23rd the 20th Helen’s Run/Walk 2017 was held – to see pictures and a video, go to https://runsignup.com/Race/Photos/NY/SandsPoint/HelensRunWalk  
  • On JUNE 22nd HKNC and the National Family Association of the Deaf-Blind will co-sponsor an early evening wine and cheese reception in New York City to promote an understanding of people who are deaf-blind.
  • On JULY 10th the Helen Keller Services 27th Annual Golf Classic will be held at the Wheatley Hills Golf Club in Williston, New York.
  • On SEPTEMBER 14th the Helen Keller Services Gala will be held at the Garden City Hotel, featuring honorees with ties to HKNC and its history.
  • On OCTOBER 7th a luncheon will be held on HKNC’s campus to celebrate the anniversary of the opening of HKNC’s headquarters in Sands Point.Guests will enjoy an anniversary luncheon followed by the unveiling of the HKNC Wall of Fame, a permanent installation that will pay tribute to the pioneers and innovators who paved the way for services to the deaf-blind community.

        For details on all these events, please go to www.helenkeller.org/hknc

        It is an honor to be HKNC’s executive director during this anniversary celebration.   Dedicated staff in the Center’s headquarters and regional offices have touched the lives of tens of thousands of deaf-blind individuals throughout the years.  We want to recognize our partners, the Department of Education - Rehabilitation Services, the HKNC Consumer Advisory Board and the many dedicated volunteers, state and local community partners, employers, generous donors and elected officials who have advocated for HKNC year in and year out. Most importantly we want to thank the individuals who are deaf-blind with whom we’ve had the privilege to share this journey of learning and working together. On behalf of everyone at HKNC, I thank you for making the past 50 years possible and join you in celebrating all we will accomplish in the future.       ~ Sue Ruzenski     

 

IN CELEBRATION OF HKNC’S 50TH ANNIVERSARY: THE ORIGINS OF HELEN KELLER NATIONAL CENTER -  PART I

        To understand how the Helen Keller National Center came to be 50 years ago, we need to look at the lives of four influential people who made it all happen.

HKNC’S FOUNDING FATHERS


Peter J. Salmon

        First there was Peter J. Salmon who, back in the early 1900s, attended Perkins School for the Blind in Massachusetts.  There were a few deaf-blind students at Perkins at the time and Peter became very interested in helping them - even learning the manual alphabet so he could compete with them to see who could fingerspell the fastest.  After graduating from Perkins, Peter stayed on for a two-year post-graduate course studying the needs of people who are deaf-blind.  In 1917 at the age of 22, he accepted a position as a business manager with the Industrial Home for the Blind (IHB) in Brooklyn, NY, where there were several deaf-blind consumers.  His background at Perkins helped him to become one of the key people who understood their needs and he introduced the group into the IHB workshop. (IHB is now known as Helen Keller Services).  During these years, he had a close friendship with Helen Keller through their mutual association with the American Foundation for the Blind (AFB).  In 1945 when Peter became the executive director of the IHB and formalized the deaf-blind program for 15 deaf-blind consumers, Helen Keller was there to celebrate – it was her 65th birthday! 


Louis J. Bettica

        Next there was Louis J. Bettica who, in the mid-1940s, became the director of Services for the Deaf-Blind at IHB.  He was a pioneer in the field and strong advocate for a formal vocational training program for people who are deaf-blind.  In the mid-1950s Louis was instrumental in conducting a study of the rehabilitation of 63 deaf-blind persons residing on Long Island.  The results of this study, published in a seven-volume report in 1959, sparked great interest in the possibility of rehabilitating deaf-blind people on a national level.


Robert J. Smithdas

        The third influential person, Robert J. Smithdas, was born in 1925.  He, contracted cerebral spinal meningitis at the age of five which resulted in him becoming totally blind and hard of hearing.  He attended Western Pennsylvania School for the Blind where, because of the progressive deterioration of his hearing, he learned the manual alphabet. Robert then attended Perkins School for the Blind, graduating in 1945 with a scholastic average of 98.6.  He was accepted for training in the IHB workshop where he met and became friends with Louis Bettica.  IHB offered Robert a fellowship for attendance at St. John’s University in New York and, in 1950, he received his bachelor of arts degree, cum laude. Three years later, he earned a master’s degree from New York University, becoming the first person who was deaf-blind to earn this degree. From 1950 to 1960 Bob was employed by IHB in the agency’s Community Relations Department and then in the 1960s, he succeeded Louis Bettica as IHB’s associate director of Services for the Deaf-Blind.


Mary E. Switzer

        And finally, there was Mary E. Switzer who, in 1950, headed the Office of Vocational Rehabilitation in the U.S. Department of Health, Education and Welfare (DHEW).  In 1967, she became the first administrator of the Social and Rehabilitation Service where she concentrated on bringing vocational training to all physically and developmentally disabled persons.  One of her arguments was that educated and trained people with disabilities could become employed and tax-paying citizens.

 

MAKING IT HAPPEN


Peter J. Salmon (left) shakes hands with President Lyndon B. Johnson

        In 1962, with support from the Social and Rehabilitation Services of the DHEW, IHB started a research and demonstration project. It was designed to develop rehabilitation services for people who are deaf-blind in the northeastern and mid-Atlantic regions of the U.S. Largely as a result of the achievements and findings of this project, the concept of a national center for deaf-blind people developed and earned wide support.  Peter Salmon, along with Mary Switzer and Robert Smithdas were appointed to testify before Congress in favor of the creation of a national center for people who are deaf-blind.  The compelling testimonies of these three individuals, combined with the pioneering work of Louis Bettica, resulted in President Lyndon B. Johnson signing into law the Vocational Rehabilitation Act Amendments of 1967 that called for “the establishment and operation of a National Center for Deaf-Blind Youths and Adults.”  

        Today, Helen Keller National Center oversees 11 regional offices across the United States and many specialized programs.  HKNC is the only comprehensive national agency that provides information, referral, support and training exclusively to youth and adults who are deaf-blind.    

        Part Two, The Early Days of HKNC, will appear in the next edition of CONNECT!

 

SPOTLIGHTING A NEW HKNC PROGRAM - DBIS

        Comprehensive vocational rehabilitation programs for youths, working age adults and seniors who are deaf-blind are constantly evolving and HKNC is committed to remaining the national leader in developing new and innovative ways of providing training to its consumers.   In addition to HKNC’s regular vocational and independent living skills training programs, in 2016 a new component was added – the Deaf-Blind Immersion Seminar (DBIS).    

       The DBIS was created for individuals who are deaf-blind and who have intellectual disabilities.  The program offers a consumer and his/her 3 person support team a unique and individualized training experience during a five-day seminar.   It provides vocational assessment and an array of work exploration opportunities for participants who have had minimal experience in the world of work. 

        The consumer participates in work experiences that match his/her interests, gifts and abilities and develops a personalized communication system of sign language, object symbols and touch signals for use at home, work and the community.  The consumers have the opportunity to learn adaptive skills in mobility, cooking, cleaning, laundry and leisure time along with an audiology assessment.  HKNC staff interacts on a one-to-one basis with the consumer and their support team modeling communication methods, teaching techniques and proven strategies.  An action plan is then developed by the support team along with the HKNC instructors for the consumer and his team to follow when they return home.


Kelly (left) learns about the vending machine business with the help of HKNC staff and a former HKNC student

        In 2016, two consumers participated in DBIS – the first was Kelly from New York with her job coach and the second was Randy, an older gentleman from Iowa with his sister, community residence supervisor and the director of his residential facility.

       Kelly participated in a work experience learning about the vending machine business.  In addition, she delivered mail to staff in their offices and participated in meal preparation. Kelly learned how to sign “more work” and began initiating this and other signs for the first time.   She also learned several touch signals which Kelly’s mother has now implemented at home.   The staff in Kelly’s day program was receptive to setting up a snack machine at their site and will look into a work experience for her stocking the soda machines on their campus.  In order to support Kelly in the community, the HKNC team introduced communication cards which she was successfully able to use to order food and drinks at local restaurants.    

       Randy had lived in a state-sponsored residential setting for over thirty years and had no activities or ways to communicate to the staff.  His sister became very frustrated by his situation.  “I wanted to talk to him about fun things.  I wanted to let him know where we were going.”


Staff from Randy’s group home and his sister teach him how to use object cues to communicate

       Using object cues and touch signals, the HKNC team began to see Randy responding to simple requests and, by the end of the week, traveling independently in the HKNC Residence Building.  A personalized book of object symbols was developed and the home team learned how to use it effectively with Randy.  Randy is currently living in a beautiful group home and, as a result of the DBIS, he is enjoying some preferred leisure activities.   Now when Randy’s sister visits him, she is able to use the alternative communication methods she learned to discuss with him where they are going and know that he understands her. 

       Support for this program comes from several sources.  When the person is working or wants to work, the state vocational rehabilitation agency can be a funding source.  Another resource for funding is the agency that provides the consumer’s residential supports.  One example is the Home and Community Based Services (HCBS) waiver funding.  Other teams apply for grants from their county or state.         

        The best scenario is to have three people accompany the focus person in this journey, either in NY or in the home community.  Those three people can be family members, residential support staff, job coaches or friends in the focus person’s life.  If you are interested in the DBIS, please contact your HKNC regional representative. https://www.helenkeller.org/hknc/nationwide-services 

 

HKNC’S SUMMER YOUTH VOCATIONAL PROGRAM


JaiFei Reeves and Cruzer

        The following article is reprinted with permission from DUALLY NOTED, News from the Pennsylvania Deaf-Blind Project. Fall/Winter 2016

         Hello, my name is JiaFei Reeves. I am 20 years old and I live in Pittsburgh, Pennsylvania. I have two brothers, one sister and my mom. We are all Deaf except my mom, so we use American Sign Language to communicate. I currently attend Western Pennsylvania School for the Deaf and Pittsburgh Public Schools. I was diagnosed with Usher syndrome 1 when I was eleven years old. The reason it took so long was because I lived in an orphanage in China. They did not know I had Usher syndrome. When I moved to America everything changed. I was quickly diagnosed and received the support I needed. As a result of Usher syndrome, I am profoundly deaf and I have low vision in both eyes.

        Last summer I had the opportunity to train at Helen Keller National Center (HKNC) for 6 weeks in Sands Point, New York. I went there to increase my skills in vocational training, independent living, assistive technology, communication skills and orientation and mobility. The training program is open to deaf-blind people all over the United States, so I met seven people in my class from several different states. At HKNC they have deaf-blind mentors who teach and support new students in the training program. It was awesome to work with mentors who know firsthand the challenges I face every day as a deaf-blind person. It was amazing to work and socialize with a group of people who have the same struggles I face every day. We learned and supported each other a lot throughout the training program and now I have lifelong friends.

I flew to Helen Keller National Center at the end of June with my service dog, Cruzer. We lived in the dorm and had our own room. Cruzer was excited to meet other dogs and play when he was not on duty. Every day we exercised on the track and visited with some of the classmates. There were four other guide dogs with participants in my class, so Cruzer did not get lonely.  He had very good behavior and I felt proud of Cruzer.

       At HKNC we had a strict schedule during the day. We went to classes every day during the week to learn about job skills, interview skills, college and community support and how to apply for jobs. We went to cooking classes, technology classes and classes that focused on apartment living, paying bills and communication strategies. Every day was busy. Throughout my time at HKNC, I worked in the classroom and I had several opportunities for “hands on” experience outside the classroom. We had the chance to work in various settings while being paid in real world work situations. I worked at a hospital, a kitchen, Old Navy and Gap stores. Each experience was new and different. These experiences helped me identify my weaknesses and strengths. I explored career options that matched my personality. My favorite part of the program was the real world work experiences. The classes were good, but I really enjoyed going off campus and working with a job coach in community work experiences.

       Another highlight at Helen Keller was the opportunity to use assistive technology. I learned about technological supports for deaf-blind people and I got to try out various pieces of equipment to determine the best supports for me to access information. That was very cool.

       In the evenings at Helen Keller and on the weekends we went on field trips and enjoyed time with classmates. Some of my classmates did not know sign language. They were learning later in life so I helped them with their sign language skills. We all helped each other. We went shopping at the mall and we went to the beach on the weekend. During the evening, most of us chatted about our families and shared information about support and strategies that help deaf-blind people function independently.

       I am very glad I got the chance to participate in the summer program at Helen Keller National Center. Many times I feel alone, but at Helen Keller there were other people like me, so I did not feel isolated. Also, Helen Keller National Center employs many experts on deaf-blindness, so I learned a lot from professional people about travel, technology, career exploration and independent living. Now that I am back home, I can implement strategies and goals that I learned from my summer experience at Helen Keller National Center.

 

TRAVELING WITH SUCCESS ON LAND, AT SEA AND IN THE AIR 

            The following three articles are written by seasoned travelers who are deaf-blind - sharing their experiences and some tips to make travel easier and safer for people with a combined vision and hearing loss.

ON LAND . . .


Chad standing in front of an Uber car holding his white cane.  The white cane has a reflective shine at night which increases safety for blind travelers.

       Chad Metcalf, HKNC associate regional representative, travels extensively both locally and across the country using a wide variety of public and private transportation.

Interviewer:  Chad, when you begin planning a trip how do you schedule your travel? 

        It’s important to have very strong orientation and mobility (O&M) skills.  Being able to use a white cane helps with independence and provides me with more options.  I can use public transportation (bus, plane, train, light rail) or private transportation (taxi, Uber, Lyft, a friend), or paratransit.  For example, suppose I am going from Los Angeles to Sacramento, California.  I use an app on my iPhone to arrange for a driver from either an Uber or Lyft car service to drive me to the airport.  The driver drops me off at the gate and I walk to the airline counter to check in.  I use a communication card that says, “I need assistance to check-in because I am Deaf and Visually Impaired.”  I use that verbiage as people get confused when I use “Deaf and Blind.”   I arrange to have an attendant walk me to the gate.  

        Plan ahead and know your options.   If I am going to stay at a hotel, I use an app on my phone to find one near my destination.  I also research nearby restaurants to see how far it is to walk to those restaurants or what public transportation options are available.  I check to see if the hotel provides a van service. I can ask at the front desk once I arrive but I prefer to find out prior to traveling.   I may use Uber or Lyft to travel to a restaurant or meeting.  I want to have my GPS ready on my phone so I can see the route the driver is taking.  If I need to communicate with the driver, I use Sorenson Buzz Cards.  The app lets me type and save messages for 1-1 communication.

Interviewer:    What do you do when traveling in rural communities? 

        Each community is different.  For instance, I grew up in Ohio and still travel and work there. There are many small towns and there’s no Uber so I check the Internet for transportation options.   It is important to schedule requests far in advance to ensure availability and arrange ahead of time how you will pay for the ride. If you don’t know if there are SSPs in that community, ask your HKNC regional rep or friends who may live in the community. 

        In your home community see if you have paratransit service.  There’s an application process for services.  Some may have a reduced fare for a person with a disability.  Some require you to make a reservation in advance and some may require you send an email before you go.  Search for ride-sharing services as another option.  Be aware of what’s available in your community.

Interviewer:  How do you handle changes that affect your travel?

        Having a back-up plan is critical for every trip I take. For example, suppose I need to fly from Los Angeles to New York for a meeting.  It’s really important that I have all of my reservations made in advance - airplane, cab service, train, etc.  I have a backup plan in case of emergency.  For example, if I land in New York and the driver isn’t there, I have a phone number I can call.  I also have a backup cab company phone number.

        When I have a connecting flight I find it important to have at least a 2-hour layover between flights.  I request the flight attendant advise me if my connecting flight is delayed.  Sometimes I can track possible delays online, but it’s really important that you ask the flight attendant to keep you informed.  Once off the plane, the gate agent can assist me without waiting in a long line.  If my flight is cancelled, I’ll contact the reservation agent by phone.  If I’m in the airport, I’ll go to the representative and ask about the next available flight.  I can also ask for assistance in finding restaurants in the terminal.

Interviewer:  When requesting an attendant in the airport do you have to use a wheelchair?

        Really it’s the deaf-blind person’s preference.   If they happen to bring me a wheelchair I ask them to not use it.  I let the attendant know that I can hold the person’s arm and we can walk.  Be assertive, but do it nicely.  Explain your needs using communication cards if necessary.

Interviewer:  What other tips do you want to share with deaf-blind travelers? 

        Have a variety of communication options. I always have a pen/Sharpie and paper ready in my bag/backpack.  You could also use the apps on your phone, communication cards or texting on your phone to communicate with others.  If you have no vision, use print-on-palm with the person.  

        Technology is great.  There are many devices and apps that can make travel easier.  I always charge my phone fully before leaving on a trip and carry my phone’s charge cord with me.   For early mornings or evenings, I keep a vision app on my phone called Night Vision or Night Eyes so I can see the sidewalk or steps.  If I’m in a car, I can hold my phone up and see my SSP signing.  I recently discovered Lumee, a new phone case that lights up the sides of the phone.  There are external batteries for phones and cases that double as a back-up battery called Mophie.  Find what works for you and have it as a tool when you travel.

        Be assertive.  If you have a question, don’t be afraid to ask somebody.  Most people are happy to help.  My job with HKNC requires a lot of heavy travel so it’s really important for me, as a deaf-blind person, to be able to travel as independently as possible.  I have to be super creative to get to all these places.  I work hard, but it’s worth it.

 

. . . AT SEA

 


HKNC related cruisers. Standing (L-R): Cathy Kirscher, former HKNC staffers Kathy and Martin Zarate. Seated (L-R): Ilissa Zucker, Dorothy Walt, Bapin, Chris Woodfill

         What’s not to like about traveling to the Caribbean islands on a cruise ship?  Last November 200 people who are deaf-blind and their SSPs joined 3500 other passengers aboard the Norwegian Escape cruise liner. It set sail from Miami for a week-long trip to St. Thomas, Tortola and the Bahamas.   Among the passengers were HKNC regional representative, Cathy Kirscher, who served as an SSP for former HKNC regional representative, Dorothy Walt; Anindya "Bapin" Bhattacharyya, HKNC coordinator of National Outreach Adaptive Technology Training Program along with his wife and young child; and Chris Woodfill, HKNC associate executive director and his SSP.  The following are their suggestions for making the trip more enjoyable for all:

        Although evening dining was elegant, it was also too dark for Dorothy to be able to read the menu comfortably.  Cathy solved this problem by taking a picture of the evening menu with her iPhone or iPad early in the day.  That way Dorothy could read it in large print at her leisure in their well-lit stateroom and decide what she wanted ahead of time.  Another suggestion for a person with low vision would be to explore each restaurant and choose the one that best meets their needs.  It is possible to make a reservation for a specific table if the lighting is best at that table.

        Dorothy and Cathy also took advantage of the reserved, close-up seating for the nightly shows.  Again, Dorothy was able to study the show’s synopsis before the event so she was familiar with the content which helped her if she couldn’t see or hear everything being presented.   Because of their close seating, Dorothy was approached by the performers to dance and sing with them which Dorothy described as “one of my highlights of the cruise.”

        Bapin reports that most cruises have great programs for kids at no additional charge.  That way, if a deaf-blind person with a spouse acting as their SSP bring along their children, they would be well taken care of and the parents could have some free time to socialize with their friends.  It is best to check ahead of time with the cruise company to see if they offer a children’s program.

        Cruise ships usually have an Accessibility Department which can be very helpful and accommodating by offering free tickets to events for SSPs on a limited basis.  However, when outside parties manage shore excursions, they may not provide free admission for SSPs. 

        There was a zip line at one of the shore excursions.  In order to participate, Dorothy clearly communicated her needs to the excursion staff prior to the activity.  In her role as SSP, Cathy explained all the details to Dorothy regarding what to expect and what she needed to do to be able to enjoy the adventure.   

        The hot tubs and pools are awesome places for hanging-out and meeting new people.  Both oral and tactile communication in such settings is very easy. 

        Taking a dog guide on a cruise can be a bit of a challenge so having a good relationship with the cruise ship’s Accessibility Department can be helpful.    Bapin contacted them ahead of time to determine the regulations for bringing dogs into each country. Some countries require blood work and the processing time can be lengthy.  If dogs are not allowed to debark, the ship’s security personnel might be reluctant to allow the dog to be left in the cabin alone in case there is an emergency.  Check with the Accessibility Department about what accommodations are in place for the guide dogs to relieve themselves.

        And finally, Chris W. shared that many cruise ships have a messenger service app to make it easier to find and communicate with friends on board.  Since most cruise ships charge a fee for WiFi service, this messenger service app provides access to other passengers without costly phone charges.  In addition, the app provides maps of the ship, a daily calendar of activities and other useful features that a deaf-blind person can easily access with their telecommunications technology such as large font, VoiceOver/TalkBack or a braille display.

 

. . . AND IN THE AIR


Scott Stoffel

        Scott M. Stoffel, a former HKNC student who currently is the owner/engineer of the Tactile Carnival, shares some of his thoughts on traveling by airplane:  

        Recently, a deaf-blind friend was informed by a major airline that she was not allowed to fly by herself. She had been flying the exact same route for years on another airline without any complaints.  Similar incidents have occurred with other deaf-blind people.   

 

         So what can we do about this? The first step in solving any problem is to understand the problem itself.  Why do some airlines deny travel to deaf-blind passengers?  Here’s the reason one major airline gave:

         It is crucial for the flight crew on an aircraft to be able to communicate with all passengers when an emergency occurs. Flight personnel are not required by law to know sign language, nor are they required to have an interpreter on board (no, the Americans with Disabilities Act (ADA) does not apply). So if a passenger can’t hear or see directions or visual cues, the passenger is at risk of not following instructions during an emergency situation. This failure of the passenger to respond correctly may also endanger other passengers in a crisis.

        And how do the airlines address this issue? Sometimes, they just ignore it and hope nothing bad will happen during a flight. Sometimes, they deny deaf-blind people the right to fly alone. In the latter case, a deaf-blind passenger would be allowed to fly only if a hearing person accompanied them. In my opinion, neither of these responses are what the airlines should be doing.

        Obviously, ignoring a potential problem is never a good idea. If an emergency situation does arise, and the flight crew can’t communicate sufficiently with a deaf-blind passenger, things could go terribly wrong.

        On the other hand, denying an intelligent adult the right to travel without a sighted hearing companion is not right. It is certainly not a simple matter to find a travel companion to go with you every time you fly. It’s also unnecessary.

        What should the airlines be doing, then? Consider the following:  Airlines should make it clear in their passenger guidelines that a flight crew must be able to communicate information and instructions to all passengers during an emergency. It must also be stated plainly that the flight crew is not required by law to know sign language or have an interpreter on board during a flight.

        The guidelines should encourage deaf-blind people (and any other travelers who can’t understand spoken instructions) to prepare a simple and quick communication system that the flight crew can use during an emergency, such as cue cards or a paper describing some tactile cues.

        The guidelines should include a list of statements that the flight crew may need to communicate to a passenger during an emergency so that the passenger can prepare a cue system that covers all of those important statements.

        Personnel encountering a deaf-blind passenger attempting to board a flight should not deny access on the spot. They should attempt to work out an emergency communication system if the passenger does not already have one ready.

        What should a deaf-blind passenger do to prepare for flying alone? Here are some things to know and do:

        When told you can’t fly alone, don’t cite the ADA. The ADA doesn’t cover flying. The law you should be familiar with is the Air Carrier Accessibility Act.

        Prepare a simple and quick communication system that someone who doesn’t know sign language or braille can use to tell you things during an emergency. Make some cue cards or a list of tactile cues that allow the flight crew to quickly tell you things like “Emergency! Stay in your seat,” or “Emergency! Go to the nearest exit,” and so on. Cue cards should have the emergency statements printed in text and braille format. Tactile cues described on a paper you give the flight crew could be things like “Draw an X on my shoulder with your finger to say ‘emergency’.” Remember that speed is important, so make your cues simple.

        Always request that the flight safety guide be available in an accessible format for you.  You must make this request several days before the flight.

        If you have a way to access text, such as a smart phone or a dry-erase board, bring it with you on the flight and explain how the flight crew can use it to communicate information to you such as sending you a phone text to tell you that the plane had to land at a different airport.

        Be sure to identify yourself as a deaf-blind person at every step of the process—booking the flight, requesting disability services, getting your boarding pass, etc. This is an important step in order to get the law behind you.

        If you are prepared for emergencies, but the personnel still want to deny you access to your flight, demand to speak with a Conflict Resolution Officer (CRO). It is your legal right to do this, and just doing it shows them you know the law. When the CRO comes, request to fill out a formal complaint form and explain the situation.

        Airlines and deaf-blind travelers need to work together to improve flight accessibility, safety and convenience.

 

DB NCOP CORNER

Communities of Practice are groups of people who share a concern or a passion for something they do and who interact regularly to learn how to do it better  ~ Etienne Wenger

 


HKNC staff members at headquarters joined 35   DB NCOP members during the  March 2017 National Call

 

        HKNC’S Deaf-Blind National Community of Practice (DB NCOP) has been busy these past several months. The December National Call hosted a group of HKNC staff and DB NCOP members discussing touch signals.  Touch signals is a general term for providing visual and environmental information to someone who is deaf-blind through touch.  Also on the agenda was Jason Herbers, a trainer in the Pro-Tactile method and philosophy. He provided the group with information about how this tactile communication philosophy is growing and developing across the country. HKNC has recently posted an on-line training course on the use of touch signals.  

        The DB NCOP has 3 focus groups on the following areas: Transition, Support Service Providers (SSPs) and best practices for teaching braille. 

        The Transition Committee will be looking at how to identify children and youth an early age who are deaf-blind and how to provide them with appropriate and effective evaluation.  This committee, working together with adult services and HKNC regional representatives, will explore ways to ensure smoother transitions for deaf-blind youth as well as providing mental health and counseling as needed. The committee will also be looking at how states are using the new Workforce Innovations and Opportunities Act (WIOA) Pre-Employment Transition Services funding to support students during transition from age 14 and up. 

        The SSP Committee will be focusing on training curriculum, implementation of programs in different states and supporting the need for state funding for SSP programs.  Currently, there are a variety of SSP programs across the country, however, they are all funded differently and there is no national certification process or curriculum for training SSPs.  The DB NCOP would like to work together to promote funding and the enhancement of services for all deaf-blind consumers across the country. The committee will begin by looking at some successful programs, working closely with other DB NCOP members who are spearheading development of programs in different parts of the country.

        The Braille Committee will focus on best practices in teaching braille to a variety of deaf-blind adult consumers, especially those consumers who are native ASL users for which English is a second language.  The committee will look into incorporating touch signals during braille classes and curriculum adaptations.  They will also investigate what qualifications are needed by teachers to provide this training to consumers who are visual or tactile ASL users.

        The most recent DB NCOP National Call was held on March 30th.  Special guest speakers were Patti McGowan, secretary and board member of the National Family Association for Deaf-Blind (NFADB), and Nancy O’Donnell, former HKNC staff member who now works for the Usher Syndrome Coalition as director of the USH Trust Registry.

         NFADB recently became a DB NCOP partner. Patti McGowan provided information related to the goals of the NFADB and its relationship with HKNC and the National Center on Deaf-Blindness and how the association can be a resource to agencies across the country. For more information about NFADB, please visit their website: http://nfadb.org

        Nancy O’Donnell talked about the information and resources available for agencies and families of people with Usher syndrome through the Usher Syndrome Coalition. She included statistics related to the prevalence of Usher syndrome in the United States, educated the DB NCOP members about the different types and sub-types of Usher and reiterated concerns that many people with Usher syndrome are not identified until they are either teens or adults. In seeking ways to identify children at younger ages and support them, the Usher Syndrome Coalition can be a viable resource for schools and adult service agencies across the country. For more information about the Coalition, please visit their website: https://www.usher-syndrome.org  

        If your agency would like to join the HKNC Deaf-Blind National Community of Practice and/or would like to view a listing of our partners, all information and an application can be found here: https://www.helenkeller.org/hknc/hknc-deaf-blind-national-community-practice


The front gate of the Helen Keller National Center

 

 

 

 

 

 

 

 

 

 

 

HKNC TRAINING MODULES NOW ONLINE

 

 

 

THE YEAR 2017 MARKS HKNC’S 50TH ANNIVERSARY OF PROVIDING PROGRAMS AND SERVICES FOR PEOPLE WHO ARE DEAF-BLIND. 

SEVERAL ACTIVITIES DURING THE YEAR ARE BEING PLANNED

TO CELEBRATE THIS MILESTONE EVENT! 

Be sure to check www.helenkeller.org/hknc for details

2017 50th ANNIVERSARY UPCOMING EVENTS

May 1-4:        Orientation & Mobility Seminar (Part II – Onsite)

May 22-26:    Confident Living Program

May 30-July 7:    Summer Youth Vocational Program, Session 1

June 22:         HKNC and NFADB co-sponsor a reception in New York City

July 10:           Helen Keller Services Annual Golf Classic

July 10-Aug. 18:   Summer Youth Vocational Program, Session 2

July 17-28:      Young Adult Summer Program

Sept. 14:        Helen Keller Services Gala honoring HKNC’s 50th Anniversary

Oct. 7:            Luncheon celebrating the opening of HKNC headquarters in Sands Point and unveiling of the HKNC Wall of Fame

 

If you are interested in more information about HKNC’s specialized training programs, please contact your HKNC regional representative http://www.hknc.org/hknc/nationwide-services

 

If you would like to reprint any articles from CONNECT!, please send an email to hkncinfo@hknc.org for permission and crediting information HKNC's mission is to enable each person who is deaf-blind to live, work and thrive in the community of his or her choice.

 

Please contact our headquarters for more information

141 Middle Neck Road, Sands Point, NY 11050

Phone: 516-944-8900 TTY: 516-944-8637 Videophone: 516-570-3626

Email: hkncinfo@hknc.org  Website: www.helenkeller.org/hknc

Susan Ruzenski, Executive Director

 

NEWSLETTER COMMITTEE

  Editors: Allison Burrows & Beth Jordan

  Photo Credits:  Allison Burrows

 

 

 

 

 

 

 

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