Summer 2015

From The Editor’s Desk I’m happy to have this opportunity to let all our CONNECT! readers know about some very exciting events that have taken place in the past few months at the Helen Keller National Center for DeafBlind Youths and Adults (HKNC). Since the U.S.

From The Editor’s Desk

Sue Ruzenski smiling into the camera

I’m happy to have this opportunity to let all our CONNECT! readers know about some very exciting events that have taken place in the past few months at the Helen Keller National Center for DeafBlind Youths and Adults (HKNC).

Since the U.S. Congress established HKNC in 1967, it has been operated by Helen Keller Services for the Blind (HKSB), a comprehensive rehabilitation program serving individuals of all ages who are blind or have a vision loss and who may have additional disabilities living in the New York Metropolitan area.

Because of the similarity in names, there has been some confusion between HKNC and HKSB amongst consumers and donors. To clearly define their relationship, a major rebranding has taken place. Helen Keller Services (HKS) is now the new name used to represent the entire organization consisting of two divisions – HKNC and HKSB. Helen Keller National Center remains the only comprehensive national program that provides information, referral, support and training exclusively to youths and adults who are DeafBlind.

We are delighted to announce that the Board of Trustees of Helen Keller Services has elected Haben Girma, an attorney, and the first DeafBlind graduate of Harvard Law School, to be their newest board member.  Haben has been a strong advocate for people who are DeafBlind and for HKNC. To learn more about Haben read the article below.

The focus of the 2015 Helen Keller DeafBlind Awareness Week Campaign is on employment opportunities for people who are DeafBlind or, as the new poster says, “DeafBlind workers are a force to be reckoned with.” I think you will enjoy reading the article in this issue of CONNECT! about some exciting employment successes. For more information about DeafBlind Awareness Week, see the article at the end of the newsletter.

A major undertaking at HKNC is updating the almost 40-year-old buildings at headquarters. Thanks to a gift from the family of one of our staff members, four of the bedrooms in the Residence have been renovated. We have recently received a bequest from the estate of a generous community member who, along with her husband, volunteered at HKNC for over 30 years.  With these funds we are now are able to go ahead with the renovations of four more bedrooms – that will make 8 in all.

The new HKNC website is making progress. Consumers and staff helped iFactory, the website designer, with the testing of the page templates. Using screen readers, braille displays and screen magnification programs, testers were asked to find certain information to see how easily they could navigate around the website.  As a result, changes were made in the design and layout to insure accessibility. Stay tuned . . .

The recipients of the Dr. Robert J. Smithdas Award this year are Ingrid Halvorsen, manager of Services for Deaf and Hard of Hearing in Illinois and Kathy Abrahamson, director of Rehabilitation at the San Francisco Lighthouse for the Blind in California. Dr. Robert J. Smithdas, a former director of Community Education at HKNC, was one of the pioneer advocates for support services for people who are DeafBlind and an original founder of the Center. He exemplified strong leadership and was innovative and relentless in the pursuit of improving and expanding services for and with the DeafBlind community. Both Ingrid Halvorsen and Kathy Abrahmson have been champions for DeafBlind services and HKNC is grateful to each of them for their exceptional dedicated efforts and collaborative spirit.

Newly Elected Trustee

In January 2015, Helen Keller Services (HKS) elected Haben Girma to its Board of Trustees. Haben is the first DeafBlind person to graduate from Harvard Law School and now works as a Skadden Fellowship attorney at Disability Rights Advocates in Berkeley, California.

Haben Girma smilingHaben graduated from Lewis and Clark College with a B.A. in Sociology/Anthropology and served legal internships with the U.S. Department of Education, Office for Civil Rights and the U.S. Equal Employment Opportunity Commission. Recognizing her commitment to disability rights, in 2010 Haben was invited to the White House Celebration of the 20th Anniversary of the ADA where she met President Obama. She joined the 2011 HKNC and Texas Tech sponsored Deaf-Blind Young Adults in Action in Washington, DC, to meet with members of Congress and their staff to promote policies affecting people who are DeafBlind. While a student at Harvard Law School, Haben was ranked as one of the “20 Most Impressive Students” by Business Insider, an American business and technology news website and was honored by the White House as a Champion of Change.

Commenting on her appointment to HKS’s Board of Trustees, Haben stated, “I am honored to have been elected and look forward to bringing my passion and experience as an advocate to an organization I have long admired.”

On the Road to Employment

Obtaining the experience necessary to get a job can be challenging. HKNC addresses this issue with its Vocational Services Work Experience Program where participants gain experience and marketable skills through paid employment opportunities.

Here are a few examples:

Rane enters data onto the computer“If we had a position open, we would hire her,” said Maria the payroll manager at a national flower delivery company speaking about Rane F. who worked several days a week at their offices in Carle Place, New York. Maria continued her praise of Rane’s work ethic, “She has the best attitude by far of any of our interns. She is willing to learn, she wants to learn, and she does everything we ask of her.” Rane, who has Usher syndrome, worked in the payroll office doing a variety of jobs including checking receipts for expense reports and entering the information on a spreadsheet, opening files for new hires, sorting mail to put in binders and more. Communication is no problem said Maria. “We write notes!” Rane’s reputation as a reliable and accurate worker spread to other departments at the company. HR asked if she could come help them with a major mailing.  “She’s a pleasure to work with and we look forward to seeing her every week,” said Maria.

Jeffrey V. loves the puzzle of assembling cabinets he just plain loves working with his hands and working with wood!   Jeff learned that he had Usher syndrome type II when he was 9 years old. He attended college where he took cabinet making classes and then set up his own business in his home making cabinets for kitchens, offices, bathrooms, and even a popcorn cabinet for a movie theater.
Jeff, with 2 owners of Kitchen KraftsAs Jeff grew older, his hearing got worse and his vision began to slowly change until, as he approached the age of 40, it became “hard to see far away.  I can’t see much of TV or peoples’ signing hands.  I can only see under a 2-inch circle.”  It was at this point that Jeff decided to come to HKNC for the training he needed to continue to live independently.  While at the Center, Jeff learned to “do things in a new way” and used his woodworking skills to work on small projects that “keep me less stressed over what I would not see again.”

But probably what made Jeff the happiest when he was at HKNC was participating in work experiences at two different jobs – one at Home Goods putting new lamps together and, “the best” – working at Kitchen Krafts where he assembled kitchen cabinets and gained valuable experience and knowledge that he will be able to use to help him get a job in the future.  Jeff says, “Thanks to everyone who taught me at HKNC.  You made each day joyful.”

Juana wears sunglasses and checks the steamersJuana G. loved her job as an LPN, but as her vision and hearing diminished she knew she had to make a change in her career path.  Working with her HKNC job coach she decided to try working in a related field. She began a work experience at a local physical therapy clinic two days a week.  “We love her here, she does so many jobs and does them all so well,” said one of the therapists.

Juana worked a 5-hour day and while she was on the job, she was all business – making sure heating pads were assembled, electrodes were ready for the therapists and ice packs were prepared. She constantly monitored the water level in the steamers and made sure the towels and patients’ gowns were washed and folded.  She said, “I’m busy all the time. I had to learn how to prioritize the jobs.”

It was a challenge in the beginning for Juana. Since the job required her to use both of her hands, she couldn’t use her cane. Working together with her HKNC job coach and the clinic staff, Juana figured out ways she could safely navigate the treatment room. As the clinic staff got to know her better and saw how conscientious and skilled she was, they began to have her work directly with the patients applying ice packs. Juana’s medical background was evident in the professional way she went about working with the patients and in the gentle and reassuring way she spoke to them.

Juana’s work ethic did not go unnoticed by the owner of the clinic who offered her a full-time job which was, according to Juana, “really awesome.” Were it not for the fact that her husband and daughters live in Texas she might have been tempted! Juana says that this work experience has made her realize that, in spite of her decreasing hearing and eyesight, she can find work that is “productive and fulfilling.”

HKNC graduates who have gone through this program are currently employed at companies such as Adecco, Apple, Cintas and in occupations such as a lawyer, a vocational rehabilitation counselor, a funeral home representative, a school guidance counselor, a massage therapist, a geographic information systems specialist and more.

Hands Across the Water

Over the years, HKNC has had the pleasure of hosting visitors from all over the world – most of whom are professionals in the field eager to learn about the services HKNC provides to Americans who are DeafBlind. The most recent visitors were:

Bjorn Skaar and Stacey Sullivan from HKNC Bjørn Skaar, an associate professor in the Department of Education at the University of Oslo in Norway. Bjørn had been traveling to several countries doing accessibility studies for people with disabilities and came to HKNC to discuss this topic with participants and staff.

Sue Ruzenski conversing with Akiko while her interpreter looks at themAkiko Fukuda from Japan is the secretary general of the World Federation Photo: Sue Ruzenski conversing with Akiko while her interpreter looks on the Deaf-Blind (WFDB) and their official representative to the United Nations. Akiko was in New York recently to present on issues related to being DeafBlind to the General Assembly and to pay a visit to HKNC to learn about our programs. Akiko holds a Master’s of Social Work from Washington University in St. Louis, Missouri, and an equivalent Master’s in Special Education in Japan.  She works for the Japanese Deaf-Blind Association in Tokyo where she is a member of a committee that is working to create a Japanese version of HKNC in Tokyo.

One woman and 2 men wearing business attireGeir Jensen, president of the World Federation of the Deaf-Blind (WFDB) paid a quick visit to the Center in March of this year. During his visit, Geir had an opportunity to speak to several staff members including HKNC executive director, Sue Ruzenski and HKNC associate executive director, Chris Woodfill who is also the North American representative to the WFDB.

Hildebjørg Bjørge and Kathrine Rehder from Hapti-Co in Norway came to the Center this spring to work with staff in the Professional Learning Department on the publication of an English version of their book on Haptics. The group is also working on a new videotape series on touch signals as related to HKNC’s all-inclusive approach and signals specifically used in rehabilitation settings. The new book and videos will also have some modified signals to meet American cultural and linguistic needs.

Alumni News and Notes

  • Waverly S’s new book, “A Chip of the Past” is about his life growing up in poverty in the South and dealing with the loss of his sight and hearing when he was a teenager. He writes under the name Twead Moore. Waverly now lives in the North and has a family.  He enjoys writing blues music lyrics and stories.
  • “The Life of Sassy Diva Janie” is a book by Theresa A. Wells from Florida who was a participant at HKNC in 2000. This is the story about Janie, Theresa’s first dog guide who is now retired.  Theresa wrote the book to help her emotionally process the early retirement of Janie after only three short years of guiding.  All proceeds from the sale of the book will go to Southeastern Guide Dogs.
  • Chris S, smiling, holds up an iPhone and iPadChristopher S. from California is working for Apple as an iOS tester. He uses his tech skills to test Apple product voice apps to make sure they work for blind consumers. Chris was an HKNC participant about 20+ years ago.
  • Teresa A. from Minnesota posted the following on HKNC’s Facebook page: “HKNC is an amazing place! I learned I was as capable as I decided to be! Now I own a wonderful home, have an incredible job with the state, and my Leader Dog and I are conquering life! Thanks to HKNC I learned life wasn’t over!” Congratulations to Teresa on making the most of her training at HKNC.
  •  Darlene L, standing outside and smilingDarlene L. is the vice president of the National Federation of the Blind of Florida Statewide Chapter. Florida Governor Rick Scott appointed Darlene to the Florida Coordinating Council for the Deaf and Hard of Hearing to represent Floridians who are DeafBlind.
  • Andy receiving award surrounded by 3 people in business attireAndy S. from Pennsylvania, an HKNC participant in 2005-06, received the Peter J. Salmon & Milton J. Samuelson Employee of the Year Award by the National Industries for the Blind (NIB).  This award was created by the NIB Board of Directors in 1968 to honor those employees who excel in their positions at NIB associated agencies and recognize their outstanding work ethic and achievements. Andy joined the Lancaster Industrial Division of VisionCorps in 2006 and is now one of the top performers due to his consistently high production levels. He can be found gardening, fishing or taking a walk when he is not at work. Andy also enjoys talking with friends on the computer using a refreshable braille display.             
  • Cathy Kirscher and CarlosRegional rep Cathy Kirscher recently visited former participant Carlos P. She writes: “Here’s a selfie of former participant Carlos P. flashing the ‘rock on’ sign.  Carlos wants staff to know that he is the self-proclaimed “King of Independence” thanks to his training at the Center.  He is attending college to finish his degree and his ASL has improved now that he is using it on a regular basis.”
  • Kelvin Crosby smilingKelvin Crosby, graduated from San Diego State. He is an employment coordinator for the State of California Department of Rehabilitation working with blind and DeafBlind individuals around San Diego County. In his spare time, Kelvin operates BLIND KELVIN Pottery.

Jon Gabry smiling and wearing a suit and tie~ Check out Jon Gabry’s new website – http://www.jongabryart.com/ We really enjoyed seeing some of his remarkable artwork and reading about what Jon has been up to since he completed his training at HKNC.  Jon and his family have been long-time supporters of HKNC – especially Helen’s Run/Walk held annually in Port Washington, New York.

We are always interested in hearing from former HKNC participants. If you have news you’d like to share with others, send it along (with pictures if you would like) and we’ll be happy to consider it for inclusion in the Alumni News and Notes column of CONNECT! and on social media.

Reflections – A Very Special Art Show

Man and Woman with PaintingImagine being able to tell your family and friends that your artwork was displayed at a unique artist showcase alongside the works of professional artists! Many current and former participants can now say that after having their works exhibited at the “Reflections” Art Show held at HKNC! For those who are investigating a career in the art field either as an artist or as an art teacher or art therapist, exhibiting in this showcase was a motivational experience.

Woman touching sculpture of a large headAs a lead in to this exhibit, participants in HKNC’s Creative Arts Department participated in four different master classes. During these classes, the participants had the opportunity to learn the techniques of these artists – an expressionistic painter, a sculptor who specializes in oversized parts of the human body, a fine arts painter, and a large-scale acrylic painter. Participants then had an opportunity to try their hand at doing their own works reflective of the style of the various artists. The end results were exhibited during the “Reflections” Artist Showcase held at HKNC last fall. The participants’ artwork was so well received that HKNC has made some of it available to the public through note cards featuring photographs of the exhibits.

The Many Faces of the NDBEDP

You would be surprised at how many steps there are in the National Deaf-Blind Equipment Distribution Program (NDBEDP) process to help a person receive a smart phone, an iPad, a braille notetaker or other telecommunications devices!  There is filling out an application, determining eligibility, completing an assessment, ordering equipment, setting up technology and training.  How long the process takes varies from person to person – state to state.

The staff in HKNC’s regional offices is very involved in the work of the NDBEDP – also known as iCanConnect (iCC).  About a third of the states take care of every part of the iCC program without outside support.  Another third of the states manage most of the steps in the process but rely on Perkins or HKNC staff for assistance.  For the other third of country, Perkins and HKNC regional offices manage the state iCC program.  As a result, just as the NDBEDP has positively changed the lives of people who are DeafBlind, the NDBEDP has significantly changed the role of HKNC’s regional representatives.  Here are a few examples:

In Texas, the iCC currently contracts with eight trainers throughout the state. Although the trainers had extensive knowledge about various kinds of technology for people who are blind, they needed more in-depth training on telecommunications devices for people who are DeafBlind.   They also needed more training related to working with consumers who are DeafBlind.  Anindya Bhattacharyya, (Bapin), HKNC’s coordinator of National Outreach, Adaptive Technology Training Program together with Molly Sinanan, HKNC’s representative, decided that it would be too difficult and expensive to bring all the contracting trainers to one location so they took the Train the Trainer Technology Seminar “on the road.”  They visited five major cities in Texas and worked with all eight trainers as well as thirteen consumers.

In New York, the NDBEDP is managed by HKNC which partnered with The National Technical Institute for the Deaf (NTID) in an effort to spread the word about iCC. HKNC purchased demonstration equipment for NTID to use in its outreach programs to advertise the NDBEDP to parents, prospective participants and professionals.

Last fall, HKNC was awarded the management of the iCC for the state of Iowa. In January alone, Beth Jordan, HKNC’s regional representative in Iowa joined Bapin to provide technology assessments to 18 consumers throughout the state.  Traveling ten days and covering 1800 miles over snow-covered roads, they met with consumers eager to learn about the latest technology and how it could improve their lives.

In the spring, the iCC program in the state of Hawaii was awarded to HKNC to administer. Region 10 representative, Cathy Kirscher has begun meeting with consumers and doing technology assessments with the support of agencies in Hawaii.

In states where Perkins runs the iCC program, there may still a need for the HKNC regional rep responsible for that state to collaborate and assist Perkins in identifying resources. Montana is a prime example of this. Scott Davert, former Region 8 representative went to Montana to conduct assessments and provide training to consumers in two cities. While there, Scott met with Division of Blind and Low Vision Services (BLVS) employees who thought they would need to train individuals who received equipment from the NDBEDP. Scott saw this as a great opportunity for BLVS in Montana and Perkins to collaborate in situations where the recipient of equipment through iCC is also a consumer of BLVS. Perkins and BLVS are developing a partnership for such instances, but it required someone to be there on the ground to make such a partnership possible.

Do you want to learn more about the iCanConnect program in your state?  Contact your local regional representative!

Staying Connected

Hello, my name is Sherrod Crawley and I live in Hopewell, VA. I am 27 years old and am DeafBlind as a result of neurofibromatosis type 2 (NF2). I was first diagnosed with NF2 around the age of 2. In early childhood, I experienced only minor issues with my vision and hearing. Then, at age 13, I started losing more hearing and vision.

Sherrod Crawley wearing a grey vest and bowtieDue to complications with my NF2, I transferred from a public school to a residential school for deaf, blind and multi-disabled. I learned sign language, braille, independent living and mobility skills. My reading, writing and math skills improved. I learned how to use a TTY with a large visual display.   After completing school I attended the Helen Keller National Center for DeafBlind Youths and Adults in New York.  I received training in communications, independent living, technology, mobility skills and vocational services.

In 2013, HKNC’s East Central regional representative, Cynthia Ingraham, introduced me to the National Deaf-Blind Equipment Distribution Program, more commonly called iCanConnect (iCC).  Through this program I received equipment that enabled me to use email, Facebook and surf the Internet to keep up with current events.   In 2014, brain tumors related to NF2 caused me to lose more vision and to have mild seizures.  As a result, I could no longer read print on my computer. I contacted the iCC program again and received equipment to help me access the computer with a braille display. Because of my braille refresher classes when I was at HKNC and a lot of hard work on my part, I have become skilled in reading and writing braille. I am also able to use my computer and braille display to communicate with my doctors, attend community meetings and conduct my own business.   At a recent doctor’s appointment, Paige Berry, senior adult specialist from HKNC met with me, my doctor and medical staff and demonstrated how to communicate directly with me using the braille display.  I was very happy because I was able to communicate directly with the doctor and know immediately what was going on.  My next goal is to be able to make telephone calls through a relay service using my braille display.

Thank you for allowing me to tell my story.  I hope other people who are DeafBlind will take advantage of the training at the Helen Keller National Center and especially investigate how equipment from the iCanConnect program can help you stay in touch with your community and the world.

Grant Prepares New Leaders

Thanks to a three-year grant from the Lavelle Fund for the Blind, Inc., HKNC has created a Professional Learning and Leadership Institute (PLLI) for individuals who are DeafBlind. The PLLI offers three to six month, paid internships for nine to twelve individuals at HKNC headquarters in Sands Point.

The goal of this project is to afford DeafBlind individuals an opportunity to gain skills towards becoming qualified to work in the field of vocational rehabilitation. It will also promote a more inclusive and active role by members of the DeafBlind Community to work as peer mentors and instructors with other people who are DeafBlind. We anticipate that this project will have a significant impact in addressing the shortage of qualified personnel.

Candidates for the internship program will gain skills within specific content areas such as independent living, adaptive technology, job coaching, communication skills training, habilitation specialists in a residential setting and more.

Candidate applications are now available.  For additional information, please contact Chris Woodfill, associate executive director, HKNC, cwoodfill@helenkeller.org

DeafBlind Awareness Week 2015

Cover of TGIM Magazine showing a woman using a braille display#TGIM (Thank goodness it’s Monday) is the heading on the 2015 DeafBlind Awareness Week poster celebrating the anniversary of the signing of a Presidential Proclamation made by Ronald Reagan in 1984 designating the last week in June every year as the Helen Keller DeafBlind Awareness Week.

This year the focus is on the achievements and capabilities of people who are DeafBlind in the work force as they make an impact at companies across the country.

2015 Summer and Fall Activities At HKNC

July 27 – August 7: 18th Annual Young Adult Summer Program for high school and transition age youth who are DeafBlind

August 26: HKNC Professional Training Seminar – “Preparing for Unified English Braille”

October 19 – 23: Confident Living Program for Senior Adults who are Hard of Hearing and Blind or Visually Impaired

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Helen Keller Services

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