Helen Keller National CenterNewsletter

Fall 2017

Read about the celebration of HKNC's 50th Anniversary, the Summer Youth Vocational Program, emergency planning, DeafBlind Awareness Week and more.

Two people touching hands while sitting at a table
At the October Brunch celebrating HKNC’s 50th Anniversary, Michelle Smithdas (L), the first DeafBlind instructor at HKNC (1979 – 2010), talks to Vera Schiller (R), the first HKNC regional representative from the California office (1976 – 1980)



HKNC is excited to be able to offer new options for assessment and training at our headquarters in Sands Point, New York.

New short-term training programs in 2-week, 4-week, 6-week or 8-week periods are now available for specific skillsets around communication, technology and mobility with augmentation from audiology, low vision and touch signals.  These short-term options are ideal for people already working who may need targeted training in a few key areas.  Short term training can be used for retention services for those in danger of losing employment and cannot be away from home for an extended period of time.

If you are interested in short-term training or the traditional training program at HKNC, please contact your regional representative for more information. There are openings as early as January, 2018.



Sue Ruzenski smiling at her desk
Sue Ruzenski

Helen Keller National Center’s 50th Anniversary 2017, has truly been a special time to pause and reflect –  to honor the past and enjoy together a vision for an even more successful future.  In the past 50 years, we’ve come a long way and the journey has been nothing short of spectacular!

We have witnessed a period of transformation whereby people who are DeafBlind have blazed a trail on the road less traveled. Time and time again we have seen how people with combined vision and hearing loss have traversed their own formidable journey and we are honored to have been a part of it. We have watched how people who are DeafBlind have met challenges, removed obstacles, changed paradigms and pushed the boundaries to lead successful and empowered lives.

This year is also time to applaud our staff, both current and former, who have contributed to the carrying out of HKNC’s mission which is to enable individuals who are DeafBlind to live, work and thrive in their community of choice.

During the year-long celebration of HKNC’s 50th Anniversary, several special events took place in honor of HKNC including the 20th Annual Helen’s Run/Walk, the Helen Keller Services Annual Golf Outing and Gala and, finally a reception and Brunch at HKNC headquarters in October.   The choice of the Brunch date is significant as it was in October of 1967 that the Vocational Rehabilitation Act Amendments establishing HKNC were signed into law by President Lyndon B. Johnson.  October was also the month that the Center was officially dedicated (1976).

The Brunch honored two former HKNC directors, Martin A. Adler and Joseph J. McNulty for their outstanding contributions to HKNC, the DeafBlind community and the disability community as a whole.  After the Brunch, I had the honor to unveil HKNC’s new Wall of Fame, a permanent remembrance honoring five of the founders who played a vital role in the legislation that established the Center 50 years ago – Helen Keller, Peter J. Salmon, Robert J. Smithdas, Mary E. Switzer and Louis J. Bettica.  

We will not let ourselves be limited by what is here today!!  Our founding fathers 50 years ago would have to admit that they couldn’t envision what was going to happen in 2017 just as we can’t predict the changes that will take place over the next 50 years.  We do know that what we have now does not have to be as good as it gets!

Looking back, we give thanks to all of you who have enriched our services through your encouragement.   Looking forward, we have great hope for the future to ensure our continued success in providing creative and innovative training programs and services for people who are DeafBlind. We will make it happen!  ~  Susan Ruzenski 

50th HKNC Anniversary Logo



1960s to 1970s

When President Lyndon B. Johnson signed into law the Vocational Rehabilitation Act Amendments of 1967 calling for the establishment of a National Center for DeafBlind Youths and Adults, he fulfilled the dreams of the founders of HKNC (see CONNECT! Vol 7 No. 2 Spring 2017).  The next step was to make those dreams become a reality!

The Act authorized the National Center to be operated by a public or nonprofit agency and the bids went out.  The Industrial Home for the Blind (IHB) in Brooklyn, under the leadership of its director, Peter J. Salmon, had a policy that IHB would not refuse to serve any individual because of their combined loss of vision and hearing. Because of this policy, the U.S. Department of Health, Education and Welfare (DHEW) chose them to establish and operate the new National Center.  (The IHB is now known as Helen Keller Services).   An interim agreement for operating the Center was signed on June 24, 1969, and the National Center began its operation in a very limited space in the IHB facility in Brooklyn.

The outside of the National Center for DeafBlind Youths and Adults building
The spice warehouse in New Hyde Park where HKNC began its training program

The cramped quarters at the IHB facility in Brooklyn proved to be problematic and so, in December of 1969, a temporary facility for the National Center was leased in a former spice warehouse in New Hyde Park on Long Island – about twenty-five miles from mid-Manhattan. As a result of a study showing a great interest in the possibility of rehabilitating DeafBlind people on a national level, HKNC opened several regional offices. The first to open was the New England regional office in Boston, Massachusetts which opened in 1969. (By 1974, five other regional offices were opened – Glendale, California; Atlanta, Georgia; Chicago, Illinois; Philadelphia, Pennsylvania; and Dallas, Texas.)

Eventually, the space in the warehouse could not accommodate all of the equipment required for the medical, industrial arts, home-making and other services involved in rehabilitation, evaluation and training of the approximately 14 clients along with their 14 direct service staff. In addition, the participants had to be bussed to the facility from Brooklyn and Long Island. So the IHB began a search to find a large enough piece of land to hold a brand new facility that would have a residential component. They eventually found a 25-acre piece of property in the village of Sands Point on Long Island, NY, which had been declared surplus by the United States Government. In June of 1971, the government came through with the original appropriation of $2.5 million for the construction of permanent facilities for the National Center. After an extensive search, an architect was hired who worked closely with the management of the National Center and Department of Health, Education and Welfare (DHEW) to develop and design a facility with features that might best meet the safety and special needs of people who are DeafBlind. A number of highly respected rehabilitation centers were visited and, as a result, several special features were included in the design of the Center and a number of innovations were added such as elevators with several buttons around the cab that could be pushed in and gently held until they popped out when the elevator arrived at each individual’s chosen floor. As the design for the first of its kind National Center developed, it became apparent that an additional $5 million would be required to cover the ever escalating construction and equipment costs. These funds were included in Federal appropriations but, by virtue of two Presidential vetos of Amendments to the Rehabilitation Act, they were not made available until July of 1973.



An artist’s rendering of the new National Center for DeafBlind Youths and Adults showing the three buildings on the 25 acres of property – a residence, a training building and a vocational building housing a greenhouse and offices

The HKNC building under construction
Training Building August 1974
The HKNC building
Training Building, December 1975
The HKNC building
Training Building, Fall 2017


Deaf-Blind Awareness Poster showing 3 women touching each other's hands and shoulders outside
The 2017 Helen Keller DeafBlind Awareness Week Poster

Since 1985 when President Ronald Reagan signed a Joint Resolution, the last week in June has been dedicated to the celebration of DeafBlind Awareness Week (DBAW). This week is significant as it coincides with Helen Keller’s birthday on June 27th. Each year, HKNC has spearheaded the awareness campaign by developing a theme and a poster to display that theme. In 1988, Greyhealth Group, a global leader in health advertising, branding and marketing, came on board and has worked with staff at the Center every year thereafter to develop a pro bono poster campaign reflecting the theme of the year.

This year, the theme celebrated The Power of Touch and the poster reflected that theme. “In the 50 years since HKNC was founded, communication technology has evolved dramatically. But even with new devices and touch signals, the DeafBlind community recognizes that there is a time and place for technology and a time and place to put it down and connect through the power of touch. In a world so focused on the digital, sometimes we can forget about the tactile, the tangible. All of us can learn from the DeafBlind community, and build relationships that are grounded in reality – because The Best Connection Will Always be the Human Connection.”

In addition to the poster, Greyhealth Group produced two guerilla marketing campaigns designed to promote DBAW in an unconventional way using high energy and imagination focusing on grasping the attention of the public in a more personal and memorable level.

In the first of these guerilla campaigns, a white cane was fabricated with a cell phone attached at the top – presumably to be used to prevent distracted people who are walking and using their
phones at the same time from bumping into things. One of HKNC’s instructors, Adriana Reali, went into a small park in Manhattan with a comedian/pitchman to play a prank on some sighted hearing New Yorkers to remind them to look up from their phones and be more present in the moment. The responses were mixed but fun and can be viewed by going to HKNC website at www.helenkeller.org/news

The Best Connection Will Always Be The Human Connection

Sue Ruzenski and Marc Forgione smiling
Sue Ruzenski and Marc Forgione

The second guerilla campaign took place in an upscale restaurant, Marc Forgione, in the TriBeca section of New York City. The idea of this campaign was to see if people, as they entered the restaurant, would put their cell phones in a secure charging station and enjoy a “device free” meal with their companions. The reactions again were mixed but the use of these charging stations in other restaurants is beginning to catch on – at least in New York City. A video was made of this event and will be posted on HKNC’s website soon. By the way, the duck is delicious at Marc Forgione!
For their almost 30 years of creative and dedicated pro bono work for HKNC and DeafBlind Awareness Week, Greyhealth Group was the honoree at the yearly Helen Keller Services Gala held in September at the Garden City Hotel on Long Island. The focus of this year’s Gala was HKNC’s 50th Anniversary and what better honorees could there be than the devoted and enthusiastic staff at Greyhealth Group! HKNC is most grateful for their commitment over these many years.

A group of men and women wearing formal attire at a Gala
The team at Greyhealth Group being honored at the Helen Keller Services Gala


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

The HKNC DBNCOP has had two national calls since the last issue of CONNECT! was distributed.

In view of the recent major hurricanes in Puerto Rico, Texas, Florida, Louisiana, Mississippi and fires in California, it was particularly interesting to hear from Val Chmela, case manager at HKNC headquarters, about the emergency and disaster training the Center provides to consumers. Val emphasized self-advocacy and the consumers’ responsibility to know how to ensure their own safety in an emergency or disaster situation.

In recent months, members of the DBNCOP have been talking about self-advocacy. At the conference call in June, Ryan Odland (former HKNC regional representative) and Chris Woodfill, HKNC associate executive director, discussed the development of the Advocacy in the DeafBlind World (ADBW) curriculum being taught at HKNC to consumers. The first in a series of training videos which follow the ADBW curriculum used in classes at HKNC has been posted on HKNC’s website.

Marsha Drenth, the DeafBlind Program manager at DeafBlind Living Well Services of Central Pennsylvania (DBLWS), provided us with the history of the development of her agency’s SSP services in Pennsylvania, one of the most recent states to begin providing SSP services statewide. This informative and important dialogue included the beginning of advocacy efforts and the focus on using Medicaid waiver monies to support SSPs for DeafBlind consumers. Marsha continues her efforts in assisting other consumers in developing advocacy skills as well. They have been funded again this year, although not for as much money, and further advocacy is continuing in the state.

Continuing the theme on advocacy, George Stern, vice president of DeafBlind Citizens in Action (DBCA) discussed the development of DBCA from its inception as DeafBlind Young Adults in Action to the current organization. DBCA has gone to Washington this year with assistance from the American Foundation for the Blind to advocate for healthcare. They are partnering with Verizon and will share more information about this with the NCOP as it happens. DBCA is working on a module geared toward younger DeafBlind youth in transition to teach leadership skills.

Ryan Odland was back on the call in his new position as outreach consultant, DeafBlind Specialty and Timothy Chevalier, Outreach and Consultative Services manager from Colorado Commission for the Deaf and Hard of Hearing. They discussed the training they are providing to police and emergency personnel in Colorado to understand the communication needs of deaf and DeafBlind individuals.

Learn more about your agency becoming a part of the National Community of Practice here.


The NDBEDP Becomes Permanent


In addition to managing the National Deaf-Blind Equipment Distribution Programs (commonly known as iCanConnect) for Florida, Hawaii, Iowa and New York, HKNC has now received the program certification for Guam, American Samoa and the Commonwealth of the Northern Mariana Islands. HKNC regional representative in California, Cathy Kirscher, recently traveled to these Pacific islands where she established relationships with local agencies and identified potential applicants and trainers. In this article she identifies some of the key aspects of establishing a distribution program in a new area.

A woman named Cathy standing teaches DeafBlind awareness to agency personnel sitting around a conference table
Cathy, standing, teaches DeaBlind awareness to agency personnel

Making contact with agencies who serve people with combined vision and hearing is the first step. These agencies included vocational rehabilitation, the Office on Aging, the Deaf-Blind Project (for children birth – 21), developmental disabilities organizations, independent living centers, and the Assistive Technology Project. Contact with the local media outlets is also important to get the word out to the public about the goals of iCanConnect. The next step is a personal visit. In Cathy’s case, the Pacific Islands are a full day ahead of where Cathy lives in California, so traveling and scheduling appointments was challenging. But the importance of this in-person contact in understanding different cultures, technology issues and the challenges faced by the residents outweighs any traveling problems. Thanks to the efforts of her administrative assistant, Ilona Mulvey, Cathy’s rather complicated itinerary went smoothly and consumer applications were processed, invoiced and the technology was ordered.
In presenting information about iCanConnect to new agencies and contacts, Cathy uses an awareness training (Deaf-Blind 101) approach so people understand the targeted population for the program. Many people hear the terms DeafBlind, NDBEDP, iCanConnect, HKNC, and think “well, I don’t work with anyone who is DeafBlind.” When Cathy explains that 90% of the people served through this program have some useful vision and hearing, the new partners start to identify possible referrals.

As a part of the training, Cathy demonstrates some of the technology that is available through iCanConnect, especially devices that are unique and/or DeafBlind specific. In the islands, when Cathy demonstrated the Serene Innovations doorbell alert system to the residents, they looked quizzical. It turns out that most homes in these territories are built with cinderblocks to withstand typhoons so they do not have doorbells – visitors yell the word “Oy” when they arrive at someone’s house. On the islands, Cathy learned that interpreters are rare. As a rule, she finds it most useful to utilize the same interpreters as much as possible for continuity in understanding the unique lingo with regard to the devices and to the DeafBlind Community. One of the problems within iCanConnect that is not unique to these Pacific islands is finding qualified trainers who have the skills to teach DeafBlind consumers how to use the telecommunication devices.

A woman named Cathy smiling while holding an iPad a Happy Birthday message on it, and a man named Ben smiling while holding a yellow computer keyboard
Cathy with Ben Servino, director of the Department of Integrated Services
for Individuals with Disabilities in Guam and Guam’s liason with HKNC.
Photo credit: The Guam Daily Post

As a result of her visits to Guam, American Samoa and the Northern Mariana Islands, Cathy became aware of several things that will help her in her future dealings with distributing devices in that area. First of all, the indigenous people on the islands have very strong feelings about preserving their culture, language and food history. For instance, “hafa adai” (pronounced “half a day”) is a common greeting for answering a phone or starting a correspondence and the islanders pledge to always use the expression. Cathy also discovered that island life out in the middle of the Pacific Ocean is pleasantly relaxed and a lot slower that what she is used to in California! Another not so surprising discovery is that there are two temperatures – hot and hotter!

If you would like more information about the NDBEDP, go to www.icanconnect.org You can find eligibility requirements, your state contact, examples of technology that is available, and stories about how people are benefiting from iCanConnect.


As students are getting close to completing their high school education, they begin to think about what they want to do in their future. Will it be college or do they want to get into the work force? To help them with this major life decision, HKNC successfully implemented a Summer Youth Vocational Program (SYVP) after the signing into law of the Workforce Innovation and Opportunity Act (WIOA) in 2014. WIOA is a federal program that provides support for expanding the training opportunities for all individuals with disabilities who have employment as a goal. The Center’s SYVP is a six-week program for transition age DeafBlind participants who are interested in job exploration and skills development for future employment. Last summer, HKNC hosted two SYVP sessions – with participants from Washington, Alaska, Arizona, Nebraska, and California.

Three women job coaches smiling outside in front of a conference center building
Three job coaches from the University of North Carolina – Greensboro assisted with
this summer’s SYVP L-R: Elaina Gasparino, Samantha Ponsolle and Emily Katella

In addition to having the opportunity to participate in community work experiences in paid positions, the participants learn how to write a resume and cover letter. They develop interviewing and self-advocacy skills as well as skills to compete in the job market and more. They also receive basic training in O & M, adaptive technology and communication strategies specific to the workplace. In the past, the participants have worked in a variety of industries and settings ranging from retail and food services to data entry and local government.
The SYVP is coordinated by HKNC’s Vocational Services Department and, this year, was staffed by three job coaches from the University of North Carolina – Greensboro. Each participant benefits from person-centered work experiences in the community with appropriate support. In addition, the HKNC team works with each participants’ home educational and vocational rehabilitation teams to create a successful transition plan for them as they leave high school and enter the adult world.
This one-of-a-kind program is designed to offer information and practical experience to expand the participants’ awareness, knowledge, skills and confidence.

2018 Young Adult Vocational Program


We’ve all been mesmerized by the power of the natural disasters Americans have faced in recent months across this country. Hurricanes, earthquakes, wildfires and tornados have, and will, continue to occur. What is important is having a plan for personal safety – especially for people with disabilities.
Historically, emergency and disaster preparation for persons with disabilities was rooted in the premise that someone will arrive to help the person to safety. Statistics prove that there are now more persons with disabilities living independently in the community than was ever imagined. Fifteen years ago, staff at the Helen Keller National Center introduced a curriculum titled, “Everyone Here Gets Out Alive”. The goal is for DeafBlind persons to independently save themselves. It includes information on all types of emergency preparedness including emergency alerts, how to respond to various emergencies and disasters, evacuation/shelter in place, response and aftermath. Key points from this curriculum are highlighted below:

1. An Emergency Means Get Out Fast! Examples of emergencies include a fire, carbon monoxide or gas leak or personal injury such as a broken leg or heart attack. On the other hand, a disaster means stay home unless told to evacuate. Examples of a disaster include a tornado, hurricane, earthquake, chemical leak or loss of electricity/power. Knowing the difference between an emergency and a disaster will help one prepare and be safe.

2. Have an Emergency Bag. An emergency bag keeps all of the information needed in an emergency, in one place. Most people leave their purse, keys, coats and white cane by the front door but often, emergencies occur during the night when people are asleep. An emergency bag kept on the side of the bed or nightstand can have everything needed to get out fast and save a life. Here are some items to keep in the emergency bag:

  •  White cane
  • Communication Cards
  • Sweat Shirt, Slippers/Lightweight shoes
  • Money ($5.00 – $10.00)
  • Hearing Aids/Batteries
  •  Copies of Insurance Policies
  • Whistle (to blow so that others can find you, if needed)
  • Wind up flashlight
  • Spare charge cord for phone/tablet
  • Bottle of Water

For the communication cards, purchase a simple, inexpensive photo album from a discount store.
Include index cards in lieu of photos with this information:

  • Name, I am DeafBlind or I am Hard of Hearing and Blind
  • Contact information for family members
  •  Copies of personal identification cards
  • Explanation of how you can communicate, i.e., large bold print, print-on-palm with explanation, tactual sign language, etc.
  • List of medications and how taken

3. Connect With Others. It is important that other people are aware of the living situation should there be an emergency or disaster. This can include extended family members, friends, neighbors, the local police and fire departments. Consider sending a letter to these people with contact information and specifics about one’s situation. Here’s an example of the support letter:

Dear Fire/Rescue Personnel:
I am writing to inform you that I am a __ year old, DeafBlind (hard of hearing and blind, etc) woman/man, living independently/with my family at ___________ address. In the event of an emergency/disaster I will need assistance to evacuate my home. I do/do not have a guide dog that will need to evacuate with me.

I have a special doorbell that when you press it a small receiver will vibrate letting me know that you are at the door. It also works with my smoke alarm. However, if I am in danger please break in, find me and draw an X on my back with your finger. This will tell me that we are in danger and that I must leave with you. I have an emergency bag near or on my bed that we can grab. This has communication tools in it that will help us to communicate and important contact information for me. I use a cane to travel but I will take your elbow and you can guide me. You can contact me by calling/texting the following number. I am happy to answer any questions you may have.

Sincerely, Your name, Address, City, State Zip Code, Phone number

4. Sign up for Emergency Alerts. There are a number of ways to stay informed about emergency and disaster events in your county or community. Most local television stations, the Weather Channel, and county/city governments offer these services. Consider signing up with these services (no charge) using a cell phone number or email address in order to receive real-time alerts as events such as severe thunderstorms, tornados and hurricanes approach one’s community.


Giving Tree on a brick wallIs there someone you would like to recognize, honor or memorialize? How about purchasing a leaf, dove or rock in their honor on HKNC’s new Giving Tree. This faux tree is permanently displayed in HKNC’s Training Building Lobby. Each leaf, dove or rock is engraved with your loved ones’ name both in print and braille. Your gift will not only create a lasting memorial to your friends and family but will also help HKNC continue to provide state of the art, comprehensive training techniques for people who are DeafBlind.

“MY SONG, MY DELIGHT” – Selected Poems of Robert J. Smithdas

A book cover showing foggy trees. The title of the book is My Song, My Delight, Selected Poem of Robert J. Smithdas“My Song, My Delight” is a new, reprinted compilation of poems written by the late Dr. Robert J. Smithdas, one of the founders and former director of HKNC’s Community Education Department. Dr. Smithdas lost his sight and hearing at the age of five. Through his personal achievements and pioneering advocacy for others, Dr. Smithdas paved the way for others with a combined vision and hearing loss to find acceptance as full members of society.

Proceeds from the sale of this book will go to the Michelle J. and Robert J. Smithdas Scholarship Fund at HKNC. If you, or others, would like copies of this book: Send a check for $20.00 per book payable to Helen Keller National Center. Please earmark the check to the “Smithdas Scholarship Fund” and send it to HKNC Development Department, 141 Middle Neck Road, Sands Point, NY 11050. You can make an on-line payment by going to https://www.helenkeller.org/donate now.


The pioneers responsible for the establishment of the Helen Keller National Center for DeafBlind Youths and Adults now have a place to be remembered and honored by all who visit HKNC headquarters in Sands Point. These five individuals, Helen Keller, Peter J. Salmon, Dr. Robert J. Smithdas, Mary E. Switzer and Louis J. Bettica played an important and vital role in the development of legislation which authorized the establishment of HKNC. They devoted their careers to advocating for services for people who are DeafBlind and/or the disability community. We are grateful for actions these visionaries took. Our Wall of Fame is a visible and permanent artifact to commemorate HKNC’s 50th Anniversary with gratitude. We honor each of these leaders and the significant role they played in addressing the issues and interests of American citizens who have a combined vision and hearing loss.

Wall of Fame showing 5 plaques against a brick wall

HELEN KELLER 1880 – 1968
A lasting symbol of courage and selflessness who changed the publics’ perceptions of the strengths and talents of people with disabilities.
PETER J. SALMON – 1896 to 1981
A pioneer in the field of blindness whose unique vision and commitment to members of the DeafBlind community changed the lives of thousands.
ROBERT J. SMITHDAS – 1925 to 2014
Renowned author, poet, lecturer and a pillar of the DeafBlind community whose life work was advocating for programs and services on their behalf.
MARY E. SWITZER 1900 – 1971
A national leader who promoted the establishment of the vocational rehabilitation system and a strong believer that people with disabilities deserve the same opportunities to be contributing members of society.
LOUIS J. BETTICA 1915 – 1999
A catalyst for the provision of national rehabilitation services and establishment of quality training programs for people who are DeafBlind.


February 27 – March 13 Interpreting Seminar (Part I – online)
March 15-16 Interpreting Seminar (Part II – onsite)
April 9-13 Employment Seminar (Part I – online)
April 25-27 Employment Seminar (Part II – onsite)
April 22 Helen’s Run/Walk 2018
May 21 – 25 Confident Living Program

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 TTY: 516-944-8637 Videophone: 516-570-3246
Email: info@helenkeller.org Website: www.helenkeller.org/hknc

Susan Ruzenski, Executive Director

Editors: Allison Burrows & Beth Jordan
Photo Credits: Allison Burrows, Kathy Anello

Remeber: Deaf-Blindness didn't stop with Helen Keller

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Helen Keller Services

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