Spring 2016

From the Executive Director’s Desk

As we embark on a new a year of exciting possibilities in 2016, I want to express a word of thanks to all our collaborative partners working with HKNC this past year to maximize resources and improve services with, and on behalf of, individuals who are DeafBlind.

The New Year, 2016, brings with it the opportunity for change, growth and strengthening of partnerships.  With the implementation of the Workforce Innovation and Opportunity Act (WIOA) well underway, there is a lot happening across the country to ensure that everyone can get the skills and training needed to get a job. This legislation has been a catalyst for HKNC to examine programs and services and expand options for transition-age youth who are DeafBlind interested in participating in Pre-Employment Transition Services. Be sure and read the article “SUMMERTIME – A BUSY TIME AT HKNC” in this issue of CONNECT!

Another groundbreaking piece of legislation that is extremely important to DeafBlind participants across the country is the Alice Cogswell and Anne Sullivan Macy Act. This bill (HR-3535), if passed and enacted, would strengthen the Individuals with Disabilities Education Act (IDEA) and would guarantee that all children with sensory disabilities receive appropriate and  quality educational services nationwide based on evidence–driven best practices. We want to especially commend Mark Richert, ESQ., director, Public Policy at the American Foundation for the Blind and a member of HKNC Advisory Committee for his authorship and shepherding of HR-3535.

Other exciting news to share – HKNC held the first Train the Trainers Seminar on touch signals in collaboration with DeafBlind leaders from Norway and across the United States.  The seminar discussed all touch signal systems with a focus on Haptics.  I think you will enjoy reading the article entitled “A FIRST!  TRAIN THE TRAINERS SEMINAR ON TOUCH SIGNALS.”

I highly recommend another article in this issue of CONNECT! “CURRICULUM DEVELOPMENTS AT HKNC” will catch you up to date on all the new curriculums that are being offered on subjects such as self-advocacy for emerging leaders in the DeafBlind community and working with people who are DeafBlind specifically designed for vocational counselors.  All very exciting and informative!

After six years as president and CEO of Helen Keller Services for the Blind (HKSB), Thomas J. Edwards has stepped down to enjoy a life of retirement. All of us at HKNC wish him well and thank him for his years of service.

I am pleased to announce that, Mr. Joseph F. Bruno was named the new president and CEO of Helen Keller Services (HKS) effective January, 29^th 2016.  Mr. Bruno has been a board member of HKS (formerly HKSB) for over 16 years (HKNC is a division of HKS – see article below for more details.)  His many years of public service experience will, no doubt, be a great asset as the agency moves forward and continues to adapt to an ever-changing environment. To read more about Mr. Bruno, please continue to the next article.   Happy reading!!

Joseph F. Bruno to Head Helen Keller Services

On January 29, 2016, former commissioner of the New York City Office of Emergency Management, Joseph F. Bruno, became the new president and CEO of Helen Keller Services.  The announcement was made by Christopher Maher, chairman of HKS’s Board of Trustees.

Mr. Bruno brings with him over four decades of public service in New York City.  He served as the City’s First Deputy Fire Commissioner and then head of the City’s Parking Violations Bureau.  He became the Fire Commissioner of the City of New York and then was elected to two separate 10 year terms as a NYC Civil Court Judge. In 2002, Mr. Bruno was elected to serve as Justice of the Supreme Court of the State of New York. In 2004, he became commissioner of the New York City Office of Emergency Management.

Mr. Bruno, a lifelong New York City resident, holds a B.S. in Economics from City College and a J.D. from St. John’s University Law School.

“I am deeply honored to serve HKS as President and CEO,” stated Mr. Bruno. “The same enthusiasm and leadership that I have shown throughout my many years of public service will be directed to HKS and its important work on behalf of individuals in need in New York and across the country. It is a great responsibility and I could not be more pleased by my new role in the organization.”

Read the full press release about Mr. Bruno’s appointment.

Check Out Our New Website

It is with great pleasure that the editors of CONNECT! announce the launch of a fully accessible new website for Helen Keller Services and it’s two divisions, Helen Keller National Center for DeafBlind Youth and Adults and Helen Keller Services for the Blind. Here’s some quick background info: Since HKNC was established by the U.S. Congress in 1967, Helen Keller Services for the Blind (HKSB) (formerly known as The Industrial Home for the Blind) has operated HKNC. Because of the similarity in names between HKSB and HKNC, there has been some confusion over the years amongst consumers and donors. To clearly delineate their relationship, a major rebranding took place about a year ago.  Helen Keller Services (HKS) is the new name used to represent the entire organization consisting of two divisions – HKNC and HKSB. On the new website, all three entities have their own separate pages with links to each other.

For over a year, a team of staff from both divisions of HKS has been working with a website designer to construct this website. One of the priorities was that the site had to be totally accessible to visitors using screen readers or other adaptive devices. Using the “Viewing Options” tab on the top bar of each of the three sites, you can not only change the text size and contrast, but also you can change the layout to either the standard layout or to a narrow view layout that removes the side margins without losing content. This unique feature will enable a person with decreased peripheral vision to see the whole screen without having to move their head back and forth to read the text.

One of the more popular sections of HKNC’s site is the Frequently Asked Questions page (FAQs). It can also be found on HKNC’s home page under HKNC Locations. Using the easily tabbed section topics on the left side bar, you can find the answers to just about any questions you may have about HKNC’s location, programs, training classes, residential services and more.

Happy viewing and let us know what you think!

Summertime – A Busy Time at HKNC

Transition age youth who are DeafBlind often need job training and support as they move from education to employment. The recently implemented Workforce Innovation and Opportunity Act (WIOA) calls for significant changes in services that will help ALL individuals with disabilities as they enter and maintain their role in the workforce. The law promises to provide more financial support for work experiences and training, including provisions for internships and mentorships; increased resources; and earlier intervention for transition from school to work such as job shadowing and information interviews. Each state and agency approaches WIOA in a different way.  At HKNC we strive to provide specialized programs to expand options to transition-age youth who are interested in participating in Pre-Employment Transition Services such as the following programs.

The Summer Youth Vocational Program is a six-week paid work experience where participants have the opportunity to shadow a current HKNC participant at their job placement and then complete their own paid work experience.  In addition to work in the community, participants receive basic training in O&M, adaptive technology and communication strategies specific to the workplace. They learn how to write a resume and cover letter and develop interviewing skills. These opportunities help define a vocational path for young adults as they finish high school.

Contact your regional representative for more information.

The two-week Young Adult Summer Program presents transition-age participants with the opportunity to explore college and career options, observe DeafBlind individuals working in the community, learn about apartment living and try out the latest in assistive technology. Working with a team of HKNC staff members as well as DeafBlind facilitators and mentors, the participants learn about their strengths and weaknesses to help them with their personal futures planning. Often these participants are the only one with a vision and hearing loss in their school. The peer mentoring component of this program is very powerful not only from the DeafBlind adult facilitators but also from the other young adults in the program.

During the Eight-Week Summer Assessment Program, high school juniors, seniors and recent graduates receive evaluation and training in five core areas: assistive technology, communication, independent living, orientation and mobility and vocational skills. This program provides time to more fully assess one’s skills and offers the benefit of meeting other young adults who are at HKNC for the various youth programs.

Participants in each of these unique programs receive an action plan with recommendations which can be shared with the participant’s educators and other home team members to assist with their transition planning.

A First! Train-The-Trainers Seminar On Touch Signals

The first HKNC Train-The-Trainer Seminar on touch signals held at HKNC headquarters last fall was truly an international event!  Two DeafBlind trainers, Aashild Lovise Johansen and Bibbi Hagerupsen from Norway and their interpreters, joined 12 invited DeafBlind participants who came from across the United States. The participants spent three intensive days in the HKNC Conference Center learning about various touch signal systems with a focus on Haptics.

Aashild is a sign language consultant for Eikholt National Center for Deafblind in Norway and provides workshops and peer courses on Haptic Communication throughout the country. She has served on the board at Landsforbundet for combined visual and hearing impaired/deaf-blind (LSHDB) for 22 years and as president for 15 years.  Aashild has Usher syndrome, Type II and uses Haptics on a daily basis in both her professional and personal life.  Bibbi has Usher syndrome, Type I and works at the Norwegian Association of the Deafblind. She is a board member of LSHDB and uses Haptics daily in all her activities.  Accompanying Aashild and Bibbi were Hildebjørg Bjørge and Kathrine Rehder, sign language interpreters, who carried on the work of Trine Næss who was DeafBlind and one of the first to work on standardizing Haptics in Norway.

The agenda for the Train-The-Trainer Seminar included learning the signals for color and numbers; letters and directional signals; describing a room, people’s facial expressions and actions; tactile braille and more. Teaching strategies were discussed and each participant had many hands-on practice sessions. HKNC’s newly published English version of the original book Haptisk Kommunikasjon, “Haptic Communication” written by Hildebjørg and Kathrine along with Magni Overås was used as the manual for this training.

Observers of the seminar saw a myriad of communication techniques being used – touch signals, tactile sign language, English to ASL and vice versa, Norwegian Sign Language to ASL and vice versa – it was quite a challenge handled with great skill by all the interpreters. The participants left with the tools needed to be able to use and share touch signals with others.  One seasoned conference attendee confided that “It was phenomenal – the best training I’ve ever been to – it was delicious!”

Statewide Needs Assessment Of Persons Who Are DeafBlind

When trying to decide on the best place to get the services they need, how does an individual who is DeafBlind or their family assess the options? Until recently, there haven’t been any specific measurements available that address the overall impact, effectiveness and satisfaction of service delivery choices.

In an effort to determine such measurements the Helen Keller National Center partnered with vocational rehabilitation agencies or agencies for the blind in five different states to conduct a statewide needs assessment. The purpose was to gain independent and objective information regarding the service needs and options available to individuals who are DeafBlind. HKNC utilized grant funding from the Helmsley Foundation to implement these studies based on a successful project HKNC completed with New York State. The four other states involved were Arizona, Georgia, Oregon and Missouri – representing a diverse cross section of the United States.  The results of this project, which began in 2012 and was completed in 2015, are expected to serve as a voice for all citizens who are DeafBlind in the United States. Key stakeholders were identified to participate in the project including consumers who are DeafBlind, their family members, service providers with state and private agencies, DeafBlind specialists and VR counselors. Confidential one-on-one interviews were held with the participants to accurately capture information regarding services they received as well as recommendations for improving existing services and identifying service gaps.

The results of each of the five statewide needs assessments were compiled in report form and one national report was prepared that looks at the combined outlook. The lead agency (VR or blind services) for each of the states involved will continue to work closely with HKNC regional representatives and administration to analyze the results and utilize the findings in the agency’s State Plan.   Here are some of the recommendations based upon the National report:

• Individuals who are DeafBlind want and need the expertise of VR staff who understand both vision AND hearing loss;
• VR personnel want and need DeafBlind cultural sensitivity training;
• States should consider hiring DeafBlind individuals with expertise or involve them as trainers for sensitivity and other training;
• Core services needed by people who are DeafBlind are rarely available from one single agency statewide. (Core services were identified through the assessment process to include: vocational rehabilitation, employment services, independent living, assistive technology, orientation & mobility.) Consequently, a person living in one part of a state may be receiving excellent core services, while someone in another part of the state may not.

Each of the five states has already seen change in the way they provide services as a result of the Statewide Needs Assessment. Here are some examples:

• Arizona has seen a surge in the number of people who are now identified as DeafBlind. In addition, they have seen a large influx of referrals to the National Deaf-Blind Equipment Distribution Program which provides access to technology and training.
• In Georgia, the HKNC regional representative provided in-service training for all VR agency personnel. As a result, Georgia has seen an increase of referrals to all services which has resulted in greater cross-agency collaboration.
• Missouri Rehabilitation Services for the Blind and MO Vocational Rehabilitation signed a Memorandum of Understanding which creates joint case sharing allowing VR counselors from both agencies to work with applicants who are DeafBlindlind, utilizing the expertise and service provision of both agencies. In addition, due to the increased awareness of the need for SSP services, a legislative bill calling for the creation and funding of SSP services was developed.
• In New York, an SSP Pilot Program was funded in the Rochester area.
• In Oregon, several people who are DeafBlind have taken on leadership roles in their community. HKNC’s Confident Living Program was provided to senior adults with many positive individual outcomes.

For a copy of the National Statewide Needs Assessment report, please send your request to Laura Thomas, HKNC Director of Field Services.

On Board With UEB

It’s now official – as of January 4, 2016, the new Unified English Braille (UEB) code has replaced the old English Braille American Edition (EBAE) and HKNC is ready!! Last summer 30 participants attended the “Preparing for Unified English Braille” Workshop at HKNC conducted by Frances Mary D’Andrea, Ph.D., chairman of the Braille Authority of North America. There were HKNC employees in attendance as well as people from the community such as teachers with vision loss, special education teachers, social workers, Federal Communication Commission accessible format specialists and staff from Helen Keller Services for the Blind. Frances Mary described the overview of changes from EBAE to the UEB code explaining why a group of 9 contractions were being “retired.” She introduced the new terminology – the number sign is now a numeric indicator; initial letter contractions or part-word signs are now Wordsigns and Groupsigns, etc.  Participants eagerly practiced the new code and the sound of 30 Perkins Braillewriters embossing at the same time was music to the ears of braille enthusiasts!

Since the workshop, everyone learning braille for the first time at HKNC – whether they are staff or participants – has been learning the UEB code.  Braille readers fluent in EBAE, have been working with their braille instructors to switch over to the new code. So bring it on! HKNC is committed to making sure all participants at the Center receive the most up-to-date training available.

Tech Update – The Smart Beetle

Reviewed by Anindya “Bapin” Bhattacharyya, coordinator of National Outreach Adaptive Technology Training Program and the Iowa Deaf-Blind Equipment Distribution Program.

If you are looking for a really lightweight braille device, the new 14-cell portable refreshable braille display – the Smart Beetle – just might be the answer for you. Despite its size and weight (slightly larger than a 3 x 5 index card and weighing less than a pound) it offers the ability to connect with up to 6 Bluetooth devices (5 Bluetooth and 1 USB) simultaneously which could be the answer for active people. Whether going to school, to work or on vacation the Smart Beetle allows you to have access to all of your mobile devices and personal computer systems. If you have several devices (phone, tablet, or a home/work laptop), just pair them to Smart Beetle and toggle among them with a press of a key. In other words, no more unnecessary pairing or re-pairing to your multiple Bluetooth devices. Smart Beetle remembers five Bluetooth devices and offers a USB 2.0 connection for a sixth.

Manufactured by Human Information Management System (HIMS) and released in July 2015, the Smart Beetle is compatible with most screen readers and the Smart Beetle’s Perkins-style keyboard matches all the functions of a QWERTY keyboard. This eliminates translation problems with mobile devices and gets rid of the sluggishness experienced with other braille displays and mobile devices.

EDITOR’S NOTE:  Reference to any specific commercial product does not necessarily constitute or imply its endorsement, recommendation or favoring by the Helen Keller National Center. 

HKNC Celebrates the ADA

Last July marked the 25^th anniversary of the signing of Americans With Disabilities Act (ADA).  To celebrate this landmark legislation, HKNC held a special program at its headquarters in Sands Point and welcomed New York State Senator Jack Martins (R-7th District) as the keynote speaker. Matthew Dwyer, the director of the Nassau County Office for the Physically Challenged was also present.

In her introduction of Senator Martins, Sue Ruzenski thanked him on behalf of the Center for his help in securing a $100,000 Grant for the renovation of the Training Building patio. A panel composed of HKNC staff members who are DeafBlind addressed the audience on different topics related to the ADA. Ryan Odland, regional representative, gave a comprehensive history of the ADA and discussed each of the 6 titles it encompasses. Maricar Marquez, director Independent Living Department, explained how the Support Service Provider Programs fit into the ADA and Scott Davert, coordinator of the New York Deaf-Blind Equipment Distribution Program spoke about the advances in technology and telecommunications as a result of the ADA. Chris Woodfill, associate executive director, wrapped up the discussion with information regarding the possibility of an additional 6th title to the ADA which is now before Congress called the Disability Integration Act.
Read more information about the ADA.

Curriculum Developments at HKNC

A new course is being offered to participants at HKNC entitled Advocacy Deaf-Blind of the World (ADBW). This course has a comprehensive curriculum designed to increase the awareness and knowledge of consumers who are DeafBlind on how to most effectively self-advocate for equal access to communication, transportation, mobility, print/media, and technology application. The curriculum is based on the Deaf Self-Advocacy course (DSAT) developed by the National Consortium of Interpreter Education Centers. The learning modules were field tested by DeafBlind staff and participants whose feedback was incorporated into the final version of the curriculum.  The ADBW will be taught on an ongoing basis as a part of the HKNC training program.  Most exciting is that this course will also be available on-line through an HKNC web-based learning course. Launch is anticipated in Spring, 2016.

The Professional Learning Department will soon be adding a new training module to the HKNC website. “Working with Individuals who are Deaf-Blind: Online Training Modules for Vocational Rehabilitation Counselors” is a web-based training series focuses on increasing the awareness and knowledge of VR counselors on how to most effectively work with consumers who are DeafBlind. There are a series of 5 online multi-media learning modules addressing the following topics:

• The Role of the Vocational Rehabilitation Counselor
• Introduction to Deaf-Blindness and Etiologies
• Communicating with Individuals who are Deaf-Blind
• Ensuring Equal Access and Participation
• Remaining Current

Each module provides a comprehensive overview of the topic area with additional resources listed for further learning. HKNC staff members who are DeafBlind field tested these modules to ensure that they are fully accessible.

Alumni News and Notes

Scott Stoffel has a lot going on!   He has been working for DeafCAN! (Deaf Community Action Network of Pennsylvania) since 2013 as coordinator of their SSP service for southeastern Pennsylvania. He helped push Pennsylvania to start a statewide SSP service (separate from DeafCAN!) and he published a book “Deaf-Blind Reality: Living the Life” (Gallaudet University Press). He is also the founder of the Tactile Carnival for people who are DeafBlind.

In recognition of Scott’s outstanding and valuable services to Deaf-Blind citizens in Pennsylvania, he was awarded the Pennsylvania Society for the Advancement of the Deaf (PSAD)’s Community Service Award. Scott said, “It was a huge honor to receive this award from PSAD. They’ve given a lot of support in helping the DeafBlind community grow.”  We say Kudos to Scott.

Brittany Winkleman from Michigan participated in the 2015 HKNC Young Adult Summer Program.  Before coming to HKNC, she produced and appeared in a 38-minute documentary describing, in her words, what it’s like to be a teenager who is DeafBlind.

Marsha Drenth is the program manager for the Deaf-Blind Living Well Services (DBLWS) of the Center for Independent Living of Central Pennsylvania.  Marsha graduated from Temple University where she earned her Bachelor’s Degree in Social Work.

Scott Dollar, in spite of being from the landlocked state of Missouri, became the first DeafBlind person to become certified by the Professional Association of Diving Instructors. He is currently working with his instructor to devise a tactual way for a blind person to be able to independently read gauges and compass navigation information underwater. “I am very happy and proud of being part of the scuba diving and I am ready for exploring and traveling to different places to dive,” Scott said. See a video of Scott’s certification dive.

No grass is growing under Patrick Veilla’s feet! Patrick is a recent graduate of Gardner-Webb University with a Bachelor’s degree in ASL and a minor in business.  After graduation, he competed in the Death Valley Open Water Swim and ran his first sprint triathlon at the Tri! Ballantyne triathlon in Charlotte, NC.  He swam 300 yards, biked 12.7 miles and ran 5 K . . . and he did it all in less than 2 hours.

In February, Patrick participated in the Challenge Walk MS in Savannah, GA, walking 50 miles in three days to honor DeafBlind individuals who have multiple sclerosis. Follow Patrick on his walk.

Marissa Gold has returned to her position as a school guidance counselor in New Jersey where she manages a caseload of over 200 participants.

HKNC’s National Community of Practice Looking for Members

At HKNC we are ready to strengthen and fortify collaborative learning with and among partners/agencies across the country and are accepting applications for those interested in joining our National Community of Practice (NCOP). Years ago, HKNC had a National Affiliate Network comprised of agencies across the country that believed in our mission and worked in partnership with HKNC to meet the needs of people with both vision and hearing loss. The HKNC NCOP is an engaged group of professionals who will come together for the purpose of shared learning and building a network of informed and dedicated partners with the goal of maximizing resources and enhancing services with and for individuals who are DeafBlind. For more information about becoming part of the NCOP, please contact your regional representative.

2016 Spring and Summer Calendar

May 9 – 13, 2016: Confident Living Program

May 16 – 18, 2016: Professional Training Seminar – Destiny

July 11 – 22, 2016: **Young Adult Summer Program

**If you are interested in more information about our summer programs for young adults, please contact your HKNC regional representative.

If you would like to reprint any articles from CONNECT!, please contact us for permission and crediting information.

HKNC’s mission is to enable each person who is DeafBlind to live and work 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: info@helenkeller.org  Website: www.helenkeller.org/hknc

Susan Ruzenski, Executive Director

NEWSLETTER COMMITTEE

Editors: Allison Burrows & Beth Jordan
Photo Credits:  Allison Burrows
Audio:  John Delach

Find the regional office in your area.