Fall 2018

HKNC Connect Vol. 8 No.

HKNC Connect

Vol. 8 No. 2 Fall 2018 

A Publication of the Helen Keller National Center for DeafBlind Youths and Adults

Welcome to HKNC’s newsletter  – CONNECT! We’ll not only be keeping you “connected” to what’s happening at the Center, but we’ll also be telling you about things that are happening of interest to people who are DeafBlind.

A group of men and women, some holding white canes, stand in front of the NY City skyline.


A woman with blond hair wearing a black jacket smiles and sits at a desk.This is a time of transformation at HKNC! Many exciting doors are opening as we cross the threshold of expanding our field services across the country. We are grateful to the federal government for the additional funding allowing growth and innovation with state and local partners.

The funds from the government have been earmarked to expand HKNC’s ability to address the gaps in services and strengthen options for the provision of services to individuals at the local level. The growth in our field services includes:

Services Program (CSP) Expansion

HKNC will replicate the New York State Community Services Program in California. The CSP offers training to consumers in their homes, communities and at work. Services include job development and coaching; skills of independent living; orientation and mobility; and adaptive technology. The California CSP team will be comprised of qualified staff who will work cohesively to support consumers with achieving their employment and independent living goals.

National DeafBlind Specialists

HKNC is creating ten (10) DeafBlind specialist positions throughout the country. The primary focus of the DeafBlind specialist will be to provide individualized services to consumers to assist with achievement of employment outcomes in keeping with our mission of supporting a person’s desire to live and work in their community of choice. The DeafBlind specialist will also offer training and technical assistance to families and service providers and will assist the HKNC regional representative to build capacity within the state. The first DeafBlind specialist has been hired in Ohio and HKNC is currently seeking candidates in Arizona, Florida, Hawaii, Iowa, Texas and Washington. Additional positions are in process.

Professional Learning Expansion

The Information Research and Professional Development Department (IRPD) has added a new position to expand HKNC’s research capacity and develop more distance learning initiatives.The new position will also support creating curriculum/materials, on-line learning opportunities and hands-on professional development. One very exciting initiative is the introduction of braille instruction using a distance learning format tailored to individual braille learners.

In addition to the above, HKNC was very grateful to receive a grant from the Lavelle Fund for the Blind, which will enable us to add another field position:

National Employment and Business Relation Specialist (NEBRS).

The NEBRS will utilize a dual customer approach to job placement services for participants participating in the HKNC comprehensive vocational rehabilitation program and consumers receiving services through HKNC‘s Community Service Programs and DeafBlind specialists. The NEBRS will address the gaps in knowledge and experience among employers and provide support and training to employers. Consumers may benefit from working in partnership with a specialist in order to network, prepare, research job opportunities and achieve their vocational goal. The NEBRS will be tasked with establishing a national employer network and will work with the IRPD to produce training materials for employers. The goal is more individuals who are DeafBlind obtaining and maintaining employment.

For more information on any of our new positions, view our website.

These are exciting times at HKNC as we expand our field services and provide additional direct services across the country.  We look forward to very productive years ahead.

~ Susan Ruzenski


By former participant, Billy P.

A young man with very short black hair.
Billy P.

In the beginning of June, I boarded a plane from North Carolina to the Helen Keller National Center in New York where I would begin a new chapter in my life. Part of me was excited and looking forward to learning new skills. However, I was also a little nervous because I was not sure what to expect in terms of how much I would learn and how I would be viewed by everyone at the Center. Even though I had come to HKNC three years prior as part of the Young Adult Summer Program (YASP), I was aware that YASP was only an overview of the material I would be covering as a traditional participant. However, I had worked hard to get myself in this position so I knew there was no turning back! I walked in to the Center with confidence and an eagerness to learn everything I could in the eight-week Summer Evaluation and Training Program.

I can happily say that my experience at HKNC was nothing short of life changing. I have gone from being someone who believed I could learn a lot but had little confidence to someone who is convinced I can learn anything if I set my mind to it. I learned everything from how to cook a simple meal in the Independent Living Department, how to use my braille display with my phone in the Technology Department and using cardinal directions when crossing streets in Mobility. I also opened my first bank account with the help of staff in the Communications Department and even learned how to fingerspell.

One of my biggest learning experiences was in my Vocational Training class when I visited two local radio stations where I interviewed two amazing broadcast directors who taught me about the radio industry. I can now say that I realize my strength as a writer and can begin using that strength to move ahead in the journalism industry. This new knowledge has given me more foundation and confidence in my vocational journey.

In addition to acquiring many new skills at HKNC, I also had the pleasure of getting to know a lot of great people. From the staff to the participants, everyone I met welcomed me with open arms and treated me like family. I heard so many unique perspectives and stories. However, no matter our differences, we were all driven! We uplifted each other as we worked to achieve our goals. I also enjoyed the recreational trips we took as a group. This gave us a chance to socialize and get to know our peers even better.

In conclusion, I want to thank everyone at HKNC for one of the most productive and enjoyable experiences I have ever had. I have learned so much and I am looking forward to possibly returning to the Center for further training in the future. I recommend HKNC to any DeafBlind individual seeking more independence and confidence in themselves. I also recommend the Center to anyone interested in helping the deaf/blind community in any way. Overall, this was a great experience and I look forward to utilizing the skills I learned.


A poster with heading “Enriching Their World So They Can Change Ours”. A young woman is standing signing to five young men and women sitting around a table.


In 1984, President Ronald Reagan issued a proclamation designating the last week of June as “Helen Keller DeafBlind Awareness Week.” Every year since, HKNC has commemorated the week with a national advocacy campaign in recognition of the achievements and capabilities of people who are DeafBlind. In 2018, Helen Keller DeafBlind Awareness Week was celebrated nationwide from June 24th to 30th and throughout the calendar year.  States participated with proclamations issued by mayors and governors, social gatherings and awareness events.

This year’s theme is INVESTING IN YOUTH TO ENRICH OUR FUTURE. The spark of change comes from the promise of youth. They have demonstrated the awareness, the poise and the determination to effect lasting change. Now it’s up to us.  HKNC and its partners are here to support the younger generation of people who are DeafBlind in actualizing their potential and supporting their emerging leadership through peer-to-peer mentoring, work-based learning and self-advocacy. Families are also included in the transformative journey. Investing in youth will enrich our future. Find out how we embrace the future at  https://www.helenkeller.org/hknc/dbaw


Thanks to a lot of hard work Helen Keller DeafBlind Awareness Week (DBAW) got some great attention around the country. The following are just a few of the activities:

  • OKLAHOMA: Governor Mary Fallin issued a proclamation recognizing DBAW 2018 and the accomplishments of DeafBlind Oklahomans.  This proclamation came shortly after House Bill 1244, also known as the “Jeri Cooper Act,” was passed.  The bill increases DeafBlind Oklahomans’ access to Support Service Providers by providing grants for the program through the Department of Rehabilitation Services. The Bill was named in honor of Jeri Cooper, a rehabilitation teacher with the Oklahoma Department of Rehabilitation Services who is DeafBlind herself.  Jeri was a major advocate for creating a SSP program in Oklahoma. Accompanying Jeri at the signing were HKNC regional representative, Molly Sinanan and former HKNC participant, Don G.
  • NEBRASKA: A proclamation issued by the Governor of Nebraska, Pete Ricketts, was read at a ceremony which included Carlos Servan, executive director of the Nebraska Commission for the Blind and Visually Impaired and Mike Foley, Lieutenant Governor of the State of Nebraska. Others of note in the audience were Brent M., a Summer Youth Vocational Program at HKNC participant this past summer
  • NORTH CAROLINA: Governor Roy Cooper issued a DBAW proclamation which was read at many events across the state by Ashley Benton, LCSW, Deaf/Deaf-Blind Services Coordinator with the North Carolina Division of Services for the Deaf and Hard of Hearing
  • KENTUCKY: Families and long-range service plan partners gathered to celebrate the signing of a DBAW proclamation issued by Kentucky Governor Matt Bevin.
  • TENNESSEE: During the Southeast Transition Institute in Knoxville, Tennessee, a proclamation from Governor Bill Haslem was read and presented to the community by Lisa Rimmell, Tennessee’s new state DeafBlind coordinator through VR. Since Lisa came on board, there has been a lot of hard work spreading awareness, providing workshops and collaborating on various events. One of the mentors for the Institute was former HKNC participant, Ashley J.
  • PUERTO RICO: Two staff members from the Deaf-Blind Project in Puerto Rico joined other partners in celebrating the DBAW proclamation. Over the past year, HKNC has worked with Linda McDowell and Mike Fagbemi from the National Center on Deaf-Blindness (NCDB) in building relationships and meeting with families.
  • SOUTH CAROLINA: Big smiles with families and Deaf-Blind Project members showing their proclamation from Governor Henry McMaster. The mayor of Columbia, South Carolina, Stephen Benjamin, also issued a proclamation.
A young man wearing a blindfold has his hand in a large pot.
A high school student sticks his hand in a pot and tries to identify what’s in it while wearing a blindfold.
A young man guides another young man who is wearing a blindfold and holding a white cane.
Current HKNC participant, Tim H. demonstrates sighted guide to a high school student under blindfold.


Capitalizing on the theme of the annual Helen Keller Deaf Blind Awareness Week, INVESTING IN YOUTH TO ENRICH OUR FUTURE, last winter HKNC initiated a Youth Club comprised of local middle and high school students. The purpose of this Club is to foster a better understanding of people with disabilities and, perhaps, light a spark in the students who are still in the formative stages of deciding their futures.

The Club was conceived and organized by a former staff member and current free-lance interpreter, Ilissa Sternlicht. Her goal was to allow local students to become familiar with people who are DeafBlind and, with enough interest, lobby the local schools to include ASL in their curriculum as an accepted language requirement.

Monthly Club meetings were first held in January 2018. Nineteen local students showed up!! The Club members had a brief introduction to the Center by a current HKNC participant who then told them the story of her personal journey into the world of being DeafBlind. In subsequent meetings, the Club members enjoyed playing DeafBlind focused games such as relay races and obstacle courses while wearing blindfolds.  The HKNC participants enjoyed teaching the Club members basic braille and American Sign Language and shared personal information about what it’s like to have Usher and CHARGE syndromes.  The Club members also learned about videophones, braille notetakers, the use of a white cane, cochlear implants and more.

Two women stand at a large table with men and women sitting on either side of them. Behind them are several colorful flags on stands.
HKNC Independent Living Department supervisor, Maricar Marquez (on right standing) presents to the conference participants


For the first time, leaders in the field of being DeafBlind from North America, Central America, South America and the Caribbean came together for the Network of the Americas Conference in Hyannis, Massachusetts. Sponsors of the conference were Perkins School for the Blind, Deafblind International, the National Family Association of the Deaf-Blind and the Cape Cod Chamber of Commerce.

The theme for the event was “Partnerships for Lifelong Learning.” Over 400 people from 23 countries attended this event which had four days of both plenary sessions and a myriad of breakout sessions with a strong emphasis on DeafBlind children and education.  Attendees included parents, DeafBlind professionals, leaders and educators as well as adult service providers and staff from various DeafBlind projects across the country. HKNC was represented by several staff members who presented on topics such as self-determination, transition services for DeafBlind youth, Haptic communication, the professional intern program at HKNC and training strategies for DeafBlind adults who have additional disabilities.

For more information about the conference program and presentations, visit this site where you will find the full program and links to presentation materials. As a sponsor, Perkins did a super job of updating followers on Facebook and Twitter about the proceedings.

DbI will host its next international world conference on the Gold Coast, Australia from August 12 – 16, 2019.  For more information, visit this page.

A woman in a red cap walking with a dog guide and a woman in a yellow t-shirt cross the finish line.
HKNC participant Alice E. places first in the physically challenged female category.


Helen’s Run/Walk 2018 at HKNC headquarters in Sands Point could not have been held on a nicer day. With temperatures in the high 50’s and the sun shining brightly what could be bad? Over 600 walkers and runners came out in support of the Center and the event netted almost $47,000.00 which will be used for HKNC’s programs and initiatives.

A man with dark brown receding hair touches a bronze plaque with a picture of a man in it.
David checks out the Smithdas plaque at the APH Hall of Fame


Former HKNC director of Community Education and an HKNC founding father, the late Robert J. Smithdas, was inducted into the American Printing House’s Hall of Fame. Attending the ceremony was former HKNC participant, David Goldstein, who accepted a copy of the plaque on behalf of Bob’s wife, Michelle Smithdas.

A woman with short blonde hair smiling and wearing a red shirt with a white collar.
Sr. Bernadette Wynne March 2, 1934 – February 21, 2018


We were deeply saddened by the passing of Sr. Bernadette Wynne – better known as Bernie – in February 2018, at the age of 84.

Bernie was hired in 1975 by HKNC as a certified teacher of people with vision loss and soon became the supervisor of the Communications Learning Center. In 1981, Bernie became one of the first members of the National Training Team (NTT) which traveled extensively throughout the United States to educate professionals about people with a combined hearing and vision loss. Bernie worked with Northern Illinois University to establish post-secondary education degrees and certification programs for professionals. She continued her work as a member of the NTT until her retirement in 2013 after 38 years with HKNC.

HKNC will be eternally grateful for all Bernie has contributed to making the Center what it is today and a bronze plaque in her honor has been placed on HKNC’s Wall of Fame at headquarters. Bernie will be missed not only by her HKNC friends but by the many people whose lives she touched across the country. May she rest in peace!


HKNC’s Professional Learning Department has launched a series of online multimedia courses designed for professionals working with individuals who are DeafBlind. These courses offer maximum flexibility, enabling participants to balance their studies with their work and family obligations.  Classwork can be completed at home at the time of day that is most convenient for the participants.


  • Working with Individuals who are Deaf-Blind: A Course for Mental Health Professionals.
  • Confident Living: A Course for People Supporting Older Adults with Combined Vision and Hearing Loss.
  • Haptics: Using Touch Signals to Convey Visual and Environmental Information to People who are Deaf-Blind.
  • Video Relay Service (VRS): Working with Individuals Who are Deaf-Blind.
  • Working with Individuals Who are Deaf-Blind: A Course for Vocational Rehabilitation Counselors and Other Professionals.

If several people within an agency or community are interested in an on-site workshop, HKNC can work with you to set one up in your local town. Often participants can complete a few training modules on-line and then gather for the hands-on components of the training. These hybrid-type learning activities can also be coordinated through the HKNC Professional Learning Department and your HKNC Regional Representative.

Check out our Learning Center to view our online courses!


The HKNC DB NCOP continues to grow and now includes a total of 52 agencies from across the US, Canada and Puerto Rico.  This year we have focused on transition, advocacy and employment and have had some wonderful contributions to our phone conferences.

Below are some highlights:              

  • Susanne Morgan Morrow, project coordinator for the NY Deaf-Blind Collaborative shared information about the Interdisciplinary Transition Team Initiative.  https://nationaldb.org/members/list?type=State+Project
  • Sheri Stanger, director of outreach, introduced us to the CHARGE Syndrome Foundation, its resources and supports. www.chargesyndrome.org
  • Nancy O’Donnell, the director of the USH Trust Registry at the Usher Syndrome Coalition, spoke about CRS TREND, an invitation only network of consented patients and caregivers living with rare disease who are engaged in community-powered science.  https://trend.community/
  • Scott Davert, DeafBlind services specialist, previously with the North Carolina Division of Services for the Deaf and Hard of Hearing, shared information about the creation of a USB Human Interface Device standard for braille displays.

HKNC staffers also shared highlights of the program here in NY.

  • Debbie Fiderer, NY Community Services Program coordinator, shared information on the Summer Youth Employment Program for DeafBlind youth in the local Long Island, NYC area.
  • Kathy Mezack, coordinator of Vocational Services discussed opportunities for youth from across the country during HKNC’s 6-week Summer Youth Vocational Program.
  • Laura Rocchio, director of Direct Services at HKNC led a discussion on the DeafBlind Immersion Experience and its expansion.

If you are interested in more information about HKNC’s specialized training programs, please contact your HKNC regional representative.

If you would like to reprint any articles from CONNECT!, please send an email to info@helenkeller.org for permission and crediting information.

HKNC’s mission is to enable each person who is DeafBlind 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
Videophone: 516-570-32466
Email: info@helenkeller.org
Website: www.helenkeller.org
Susan Ruzenski, Executive Director


Editors: Allison Burrows & Beth Jordan
Photo Credits: Allison Burrows, Marilyn Trader
Technical Support: Ryan Melendez

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Remember: Deaf-Blindness Didn’t Stop with Helen Keller


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