Fall 2016

Celebrating Helen Keller DeafBlind Awareness in 2016

The Helen Keller DeafBlind Awareness celebration this year focused on the perspective of employers who have hired people with a combined vision and hearing loss. Time and again the employers state that hiring a DeafBlind person has given them a competitive advantage and a valued social component that contributes to the success of their businesses.   While research shows that a workplace inclusive of people with disabilities is good for business, HKNC Executive Director Sue Ruzenski believes more needs to be done to reach employers on how to effectively recruit, retain and advance DeafBlind individuals. “The first step is to make businesses aware of others who have successfully hired DeafBlind workers and how it has turned out to be a great business decision for everyone involved,” she observes. “That’s what this year’s campaign is all about.”

Marissa lost her vision suddenly due to a virus.  The treatments to save her life caused her to lose her hearing. After training at HKNC, Marissa was able to return to her job as a high school guidance counselor.

David received training at HKNC and then moved into Destiny Home, the first community residence in New York State for individuals who have a combined vision and hearing loss as well as intellectual disabilities.  He is now gainfully employed at a local restaurant.

You can read more about Marissa at https://www.helenkeller.org/hks/news-stories/marissa%E2%80%99s-story-it-takes-team To see videos of Marissa and David on the job, please check www.helenkeller.org/hknc and watch for them to be posted.

Preparing for Work

While participants are attending the HKNC training program, they have an opportunity to experience employment in real world settings. Working with staff in the Vocational Services Department, participants find a work experience in a field that interests them. These work experiences enable participants to obtain marketable skills and learn firsthand what it takes to work in that field on a day-to-day basis. In some cases, they have resulted in full time work for the participants. Jacqueline G.’s story below is just one example of positive interaction between employer and employee.

Jackie on the Job

“She peels, she chops, she works with the cooks, she loads the dishwasher, she sees things that need to be done and she does them!” This is how Maura Dillon, director of the Food Services Department at St. Francis Hospital in Roslyn, New York, described participant Jacqueline G. who has been doing a work experience at the hospital for several months. Jackie is a young woman from Texas and Ms. Dillon was so pleased with her capabilities and work ethic that she stated, “If she lived here in New York, she would definitely be a hire.”

Jackie was voted St. Francis Hospital Food Services Employee of the Month this past September and was honored with a cake, cheers with many hugs from her fellow employees and her own star for the kitchen bulletin board.  Anthony Baffo, operations manager, said “The good thing about Jackie is that she sees what has to be done and takes the initiative to do things without prompting – like cleaning the chicken chopper when it is dirty, organizing the pot room, picking things up off the floor and making sure equipment is put away where it belongs.”  The first cook, Michael McCabe, thinks so highly of Jackie’s skills that he presented her with her own knife and took her aside to find a special place to keep it.

Jackie will continue working at St. Francis two and a half days a week while she completes her HKNC training. Maura Dillon said that she and the staff will be very sorry when Jackie has to leave but she is already planning a wonderful letter of recommendation for her.

More Employment Sucesses

HKNC’S Community Services Program offers assistance to consumers living in the New York Metropolitan area including job development and coaching.  Two of their consumers have reported on their recent activities.

Hussein C. participated in a full time summer work experience as an office clerk in the Program for Deaf Adults office at LaGuardia Community College. He is a participant at the National Technical Institute for the Deaf where he is working toward an Associate’s Degree in Business Technology.

Connie S. is working part-time in a work experience training at the GAP in Howard Beach, Queens. Connie had worked when she was a young adult and then left the workforce to raise her family. Now that her daughter is grown, Connie is interested in exploring options for part-time work. Nervous about her vision and hearing loss and wanting to stay close to home, Connie and her CSP placement specialist, Kim Dolan, explored retail stores close to her home. The GAP in Howard Beach was happy to have Connie and she has been proving herself to be an exemplary worker and a real part of the team.

A New Intiative at HKNC

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 DeafBlind National Community of Practice (DB NCOP) is comprised of agencies across the country, Canada and Puerto Rico who are committed to providing services and advocating for people who are DeafBlind. This group currently consists of 36 agencies plus the Helen Keller National Center. This corner of the CONNECT! will be dedicated to the DB NCOP.

The goal of the DB NCOP is to create closer partnerships between agencies across the country in order to enhance services, advocate and develop best practices to increase opportunities and supports with and for people who are DeafBlind.  Partner agencies commit to sharing information through quarterly national calls, a DB NCOP Google Group and HKNC’s CONNECT! newsletter. Partners also commit to other initiatives including innovative research, contributions to the National Registry of Persons who are Deaf-Blind maintained by HKNC and support of national initiatives on employment and services for adults 55 and older.

The theme of the first DB NCOP national call was transition. Three HKNC regional representatives discussed transition planning and the importance of participants and families receiving information early on about adult services. We also discussed the newest national child count that is posted on the National Center on Deaf-Blindness website www.nationaldb.org along with several resources for families and service providers. Resources can be found on the HKNC website here.

The DB NCOP most recent phone call was held in September 2016, and the theme was Support Service Providers (SSPs). The topic was specifically related to providing paid SSP services that are state funded. HKNC regional representatives discussed the process of successfully passing legislation to provide funding for SSP services in Missouri and Colorado. Ryan Bondroff, Mark Gasaway and Kathy Gabry (DeafBlind Community Access Network-New Jersey) discussed their roles in a national SSP Task Force formed to develop curriculum and SSP certification. Another area of discussion was braille training.  Elizabeth Sammons, Program Administrator/Outreach Coordinator at Opportunities for Ohioans with Disabilities, discussed the two-week Do-Dots Program she ran this past summer to provide braille training to DeafBlind people. From these two discussions, subcommittees will be formed to support advocacy efforts for SSP funding and training and development of best practices in braille training.

Please visit HKNC’s website to learn about the new DB NCOP and view links to the agencies who are partnering with HKNC.  As a special incentive, HKNC’s DB NCOP partners receive discounts on all HKNC Professional Learning Online Courses.

NDBEDP and a Wedding!

Arlene and her husband live in a very rural area of Iowa at the end of a long dirt road far away from the nearest town.  She is DeafBlind and uses ASL visually at very close range – her husband doesn’t sign.  Arlene was not readily able to communicate with her family and friends and felt very isolated.  That is until recently when she received equipment though the National Deaf-Blind Equipment Distribution Program (NDBEDP.)   When Arlene received an iPad Pro and learned how to use FaceTime and messaging to communicate with her family and friends, her life was changed.

One of Arlene’s daughters writes the following to HKNC regional rep, Beth Jordan, who is one of the coordinators of the Iowa DBEDP: “I have been communicating with mom every week which has been so nice!!  She reached out to my sister and another friend this week.  They were able to watch my son’s wedding as well on the iPad with my sister there to share with my mom what was being said.    Until the day of the wedding mom didn’t understand that she would be able to watch the wedding live. The excitement on their (her mother and father) faces was priceless!   I so much appreciate your help in providing this technology.”

The 2016 Robert J. Smithdas Award Honors Two Recipients

HKNC is very pleased to announce that the recipients of the 2016 Dr. Robert J. Smithdas annual award are Ashley Benton and Dr. Jeffrey S. Bohrman.  This award, given in appreciation of the recipient’s “dedication, advocacy and commitment to people who are DeafBlind,” is named in honor of Dr. Robert J. Smithdas 1925 – 2014), a former director of Community Education and one of the founders of HKNC.

Ashley Benton is the Deaf/DeafBlind coordinator at the North Carolina Department of Health and Human Services, Division of Services for the Deaf and Hard of Hearing.  In addition to her work at the division, Ashley is also a mentor, a mental health counselor, a camp director, a professional trainer and an advocate. Jan Withers, division director, said “For Ashley Benton to have received such a prestigious award is not a surprise.  Ashley has been a proven leader, effective advocate and well-respected role model for DeafBlind people in North Carolina and the nation for many years – and she is only getting started!  We are extremely fortunate to have Ashley on staff.”  Ashley was presented the award by HKNC southeast regional representative, Marilyn Trader. Ashley gave credit to HKNC for helping to shape her sense of self. “I honestly cannot take all the credit for my achievements” she said. “It all started with my time at the Helen Keller National Center – the development of my proud and true identity as a DeafBlind person.” (Excerpted from The Department of Health and Human Services blog written by Ryan Hill.)

 Dr. Jeffrey S. Bohrman has been working in the field of vocational rehabilitation since 1993, with an expertise in serving people who are DeafBlind.  Jeff received a B.S. from Dickinson College, Carlisle, PA; a B.S. from the University of Pittsburgh School of Pharmacy; an M.S. from the University of Illinois, Medical Center; and a Ph.D in Pharmacology-Physiology from the University of the Pacific, Stockton, CA.  He worked as a research scientist for the federal government and was instrumental in establishing the Ohio Deaf-Blind Outreach Program at the Columbus Speech & Hearing Center, and the Ohio Association of the Deaf-Blind, a consumer advocacy/networking organization. Beginning in 1989, Jeff served in different capacities with the American Association of the Deaf-Blind (board member, president, first vice-president and treasurer.) Over the years Jeff has received numerous awards for his outstanding efforts in developing supports and services for people who are DeafBlind. A few examples include National Hall of Fame for People with Disabilities; Alice Cogswell Award from Gallaudet University; Distinguished Alumni of the Year from Dickinson College; Outstanding Leadership Award from the Ohio School for the Deaf; and others. Jeff has held memberships in the American Council of the Blind, the World Federation of the Deaf-Blind and on a number of advisory boards including the Ohio Center for Deafblind Education and the Helen Keller National Center.

About Dr. Robert J. Smithdas

Dr. Robert J. Smithdas (1925 – 2014) received a Bachelor of Arts degree, cum laude, from St. John’s University and, in 1950 at New York University, became the first person who was DeafBlind to earn a master’s degree. In recognition of his unique talents and dedicated life’s work he received honorary doctoral degrees from Gallaudet University, Western Michigan University, St. John’s University and Mount Aloysius College. Bob played a vital role in the development of legislation which authorized the establishment of HKNC and devoted his life to advocating for services for people who are DeafBlind.  Previous winners of this prestigious award are (2014) Congressmen Kevin Yoder, Mark Tanko and Steve Israel and (2015) Kathy Abrahamson and Ingrid Halvorsen.

HKNC’S Confident Living Program – At Home and On the Road

The Confident Living Program (CLP) at HKNC is designed to provide senior adults (“age 55 and better”) who are experiencing a combined vision and hearing loss with tools and strategies that will help them live as independently as possible in a setting of their choice. The CLP is a safe haven where participants can count on acceptance and receive accommodations for their hearing and vision loss.

The program, which is generally conducted twice a year at HKNC headquarters in Sands Point, New York, has an “On the Road” component which brings it to a senior’s home community or state.  In the article below, you will read about the CLP in each of these settings.

CLP at HKNC Headquarters in Sands Point, NY

What do a former biochemist, maintenance worker, elementary school teacher, retiree, and Navy keypunch operator have in common?  Answer: They all are from California, they all attended the HKNC Confident Living Program held last spring at HKNC headquarters and they all have a combined vision and hearing loss. They also all had a similar goal – to maintain their independence!

Guided by HKNC’s Paige Berry, senior adult specialist and Lisa Honan, certified social worker, the seniors participated in activities that were geared to help them achieve their goal.

The groups are small in size – usually no more than 6 – and customized to meet the needs of the seniors allowing for individual attention, training and peer mentoring. This immersion experience allows seniors the opportunity to meet others who are experiencing combined hearing and vision loss and share coping strategies.

During every CLP training, seniors get a greater understanding of their communication options such as learning about assistive devices, hearing aids, large display watches, telephones with volume control, signature guides, large print address books, raised line check registers and closed-circuit TVs. They learn how to adapt their home environment to make it safe and efficient like the use of vibrating alerting systems, organization skills for monthly bills and tactual methods for thorough and effective cleaning. In the kitchen, participants learn safe techniques for using electric grills, microwave ovens and regular stoves. They are introduced to the newest appliances and ways to tactually mark them to make cooking easier and more fun. They learn ways to identify colors and to be able to separate their clothing and complete laundry with ease and efficiency. The groups are small in size – usually no more than 6 – and customized to meet the needs of the seniors allowing for individual attention, training and peer mentoring. This immersion experience allows seniors the opportunity to meet others who are experiencing combined hearing and vision loss and share coping strategies.

Computers, braille/speech access, CCTVs, screen magnification, Internet/e-mail, instant messaging?  What does it all mean?  During the program HKNC’s technology specialists give participants the opportunity to check out the latest and greatest devices and identify the equipment that will be most accessible and useful to them. Technology is meant to help – not hinder!   Attending this program gives participants a comfort level with the advances happening in our world today and learn how to put them to their own personal use.  And finally, participants receive information on self-advocacy, have an opportunity to meet with an elder law attorney and learn about emergency preparedness and integrating into the community.  It’s a loaded program for sure!

“All work and no play makes Jack a dull boy” – so evenings often find the seniors riding the ConferenceBike – a bicycle built for seven – and traveling into New York City for dinner and sightseeing.  When all was said and done, one of the seniors attending the spring CLP (age 95) commented when asked if he was tired, “Here you can’t afford to be tired – there’s too much to learn.”

CLP on the Road in Missouri

With a great deal of planning and coordination, 3-day Confident Living Program events were held in two locations in Missouri this past spring and summer.

A little history:  In 2013, HKNC collaborated with Missouri Rehabilitation Services for the Blind (RSB) to complete a Statewide Deaf-Blind Needs Assessment process through 1-1 consumer interviews.  Surprisingly, a large percentage of senior adults who were identified still had unmet needs related to their vision and hearing loss despite having received services. To address those needs, HKNC approached RSB about bringing in Paige Berry, and Lisa Honan to present the CLP.

To prepare, Beth Jordan, HKNC regional representative held regular planning meetings with RSB leadership to identify a host site for the two events, select seniors for the program and process their applications, coordinate their transportation and arrange for materials in print and braille.  At the same time, Beth worked with Paige and Lisa to formulate the schedule, identify local speakers on topics such as elder law, coordinate meals and locate assistive technology to demonstrate to the senior adults.

Not only was this a training program for the senior adults with vision and hearing loss, but also for several Missouri RSB’s rehabilitation teachers and orientation and mobility instructors.  These teachers were experienced working with blind adults as many were blind themselves.  They attended the event and presented to the seniors about low vision aids, mobility techniques, and the latest iPhone applications.  They also learned from Paige and Lisa about strategies, techniques and methods to address the issues related to communication and hearing loss, something less familiar to them.

To evaluate the effectiveness of the CLP sessions, all participants completed pre- and post-surveys regarding their experience and knowledge of resources and tools.  In addition, action plans were developed for each senior adult participant – 10 in St. Louis and 11 in Kansas City.  Beth, with assistance from the RSB rehabilitation teacher, is providing follow-up with each of these participants to ensure the action plans are completed.

If you, or someone you know, would benefit from HKNC’s Confident Living Program and to learn more about qualifying for financial assistance for this specialized program, please go to this webpage. Paige and Lisa promise these will be unforgettable weeks of learning, laughing and personal discovery!

Alumni News and Notes

~ Quinn Burch graduated cum laude with honors from The College of Saint Rose in Albany, NY. Quinn earned a bachelor’s degree in interdepartmental studies with course work in psychology and English. We extend to Quinn our heartiest congratulations. For more details, go to http://m.timesunion.com/tuplus-local/article/Deaf-blind-Saint-Rose-grad-strives-for-7468248.php

~ Jose Amaya and his wife Tania are featured in an article in the Los Angeles Times about how they met at the Braille Institute in California.  Jose is working at a clothing store in Northridge, CA, and Tania teaches at the Braille Institute.  To read the article, go to Tania and his wife http://www.latimes.com/local/california/la-me-adv-blind-deaf-couple-20160404-story.html

~ Cynthia Hart is now employed as a receptionist at The Travis Association for the Blind in Austin, Texas.  Travis is an affiliate of the Austin Lighthouse for the Blind.  According to Cynthia, Travis is “a good place to start back to work and gather some more tools under my belt.  I haven’t started worrying about taking the LSAT yet. I know me and if I try to take on too much I’ll crash and burn. Don’t wanna crash and burn!   Anyway, I miss everyone. I miss New York – a land of adventure and Yankee ball games of which I have yet to get to – you’ve been in my thoughts! Take care!”

~ Charlene Ouelett writes: “Thought I would share my latest adventure with my loving HKNC staff.”  Charlene has qualified for a clinical trial in Florida for a revolutionary new surgery in which stem cells will be injected from bone marrow in her hips into her retinas.  She is currently employed at Village Candle in the Finance Department.  She credits HKNC with giving her the confidence she needed to get back into the work force. In 2009 when Charlene was a participant at HKNC she was working with a counselor who told her, “Charlene, just because you have a disability with your eyes and your ears, doesn’t mean your mind is disabled.” Charlene said “It just kind of clicked with me from that point on.” Charlene was recently interviewed on WCSH6 News and CBS Channel 13 WGME in Maine. Watch the video here.

 ~ Sonia Hernandez attended the HKNC training program in 2014 and then returned to the Center to do an internship in the Independent Living Department in 2015 through the Professional Learning and Leadership Institute Grant (PLLI).  This three-year grant offers three month paid internships for individuals who are DeafBlind to give them an opportunity to gain skills to become qualified to work in the field of vocational rehabilitation.  Upon completing the PLLI internship, Sonia was hired to become a full-time assistant instructor in HKNC’s Independent Living Department where she works directly with participants.

~ Divya Goel recently graduated from Valencia College in Orlando, Florida.   When she entered college in 2009, Divya wanted to be a co-owner of her family’s Indian restaurant, but several events made her change her mind and decide that she wanted to work with the DeafBlind community.  In 2009, she was selected to be one of the six original members of the Deaf-Blind Young Adults in Action (DBYAA – now known as DeafBlind Citizens in Action) and was with the group when they met President Barack Obama in the Oval Office.  The same year, she and other members of DBYAA attended the Helen Keller World Conference in Kampala, Uganda in Africa. In 2013, Divya received the Valencia College’s 37th Annual Incentive Award for being “one of the best participants and a hard worker” becoming the first DeafBlind person to have received this award in the college’s history. Divya participated in HKNC’s 2-week Young Adult Summer Program (YASP) in 2004 and then, for three years beginning in 2010, she served as a mentor for the program.  In 2013 she became one of the facilitators – a position she has held ever since.  We are now happy to have Divya back at HKNC as an intern in HKNC’s Professional Learning and Leadership Institute.

~ Patrick Vellia is at it again in his Ironman journey!  Earlier this year he competed in the 20th Annual Death Valley Open Water Swim Meet hosted by the Clemson Aquatic Team from Clemson University in South Carolina. Patrick came in 3rd place in the 1K, and in the half K he came in 4th place.  During the swim, he was tethered to his guide, Joe MacGregor, with a three-meter-long swim belt.

Patrick’s latest achievement is completing an ironman event – the IRONMAN 70.3, in Augusta, Georgia.  This was his first ever half ironman triathlon.   The course consisted of a 1.2-mile open water swim, a 56-mile bike course and a 13.1 half marathon run.  Patrick met his goal of finishing within the time limit of 8:30:00 – he came in at 7:24:45!  Congratulations to Patrick.

~ Anthony Rodriguez was recently recognized by the Maryland Association of Community Services with a MACS Achievement Award for his outstanding personal and professional achievements over the last year. A participant at HKNC in 1990, Rodriguez has been receiving services from the Deaf Independent Living Association in Maryland since 1990. He works competitively out in the community and is currently renting his own apartment. He is deaf and blind as a result of Usher syndrome. Rodriguez was also recently recognized by his employer, Blind Industries and Services of Maryland (BISM), for 25 years of employment. He works in BISM’s Salisbury sewing facility as a sewing associate.

Poetry Corner

Editor’s note: The following poem was written by Quinn Burch, a participant at HKNC

TACTILE LOVE

How I love texture, all kinds:

soft, fuzzy, my cats’

warm fur, my favorite

pink blanket, my mother’s

leopard coat, black and gold;

or rough and tickling my hand,

braille running under my fingers,

my kitten’s tongue

cleaning my knuckles.

Touch is my sight—

how I love to feel.

2016/2017 Calendar of Events

November/December 2016: Happy Thanksgiving, Merry Christmas and Happy Hanukkah to all.

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

SEVERAL ACTIVITIES DURING THE YEAR ARE BEING PLANNED

TO CELEBRATE THIS MILESTONE EVENT!

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

2017 WINTER/SPRING CALENDAR OF EVENTS

January 26: Kick-off Breakfast for 50^th Anniversary celebrations AND Helen’s Run/Walk

April 23: Annual Helen’s Run/Walk in Sands Point, New York

April 9-22: Orientation & Mobility Seminar (Part I – Online)

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

May 15-17: Whole Life Planning Seminar

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

https://www.helenkeller.org/hknc/nationwide-services

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 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