Vol. 2 No. 3 June 2011 A Publication of the Helen Keller National Center for Deaf-Blind Youths and Adults
TABLE OF CONTENTS
141 Middle Neck Road
Sands Point, NY 11050
VP: 866-351-9089 or
Joseph J. McNulty
HKNC Regional Offices
Sands Point, NY
East Moline, IL
Shawnee Mission, KS
San Diego, CA
Helen Keller Services
for the Blind
It is important to understand that the Helen Keller National Center is just that – National. Our field services extend to all adults who are deaf-blind in the United States and its territories not only at the training program in New York, but also across the country. This issue of CONNECT! highlights some of the nationwide activities of HKNC.
We are often asked “How does a person with vision and hearing loss find out about the HKNC program and/or services in their local community?” Or, “Does everyone who is deaf-blind have to come to HKNC in New York?” The answers to these questions and more can be found by referring to HKNC’s regional representatives. In this issue, we spotlight their activities including follow-up services for a former student, and a newly funded support service provider (SSP) program.
HKNC also offers a national customized program for senior adults who are experiencing the loss of vision and hearing. This group is the focus of the Helen Keller Deaf-Blind Awareness Week 2011. You’ll read about the Confident Living Program and the training that is offered.
For the third year in a row, the Deaf-Blind Young Adults in Action (DBYAA) made an impact in Washington, D.C. This year’s members met with top officials in the Department of Justice, the Federal Communications Commission, and the Department of Education to advocate for services. Further details on all of their activities are reported in this issue.
Clearly, it doesn’t all happen at our headquarters in New York! - Joe McNulty
Joe with staff from HKNC Field Services:
Regional Representatives, Confident Living Program, and National Training Team
HKNC’s regional representatives are generally known for being the “first point of contact” for the Center’s training programs. Located in ten offices across the country, their roles are far more extensive with their activities varying from day to day, region to region.
Because of their wealth of experience working with people who are deaf-blind, regional representatives are sought after for many reasons. Consumers often consult with a rep about their personal adjustment to vision and hearing loss. The reps offer support and encouragement and, as a result, some consumers decide to attend HKNC. Regional reps raise public awareness at conferences where they educate participants about the services provided at HKNC or deaf-blindness in general. Several reps are working to establish local services such as creating a new deaf-blind specialist position in an underserved area. The following are some more examples of their various services:
§ Consumer advocacy
A deaf-blind artist applied for in-home support services from her state. After seeing her artwork and assuming that she did not need support, the evaluators dismissed her request. To assist, her regional representative provided resources to appeal the decision and it was reversed! The supports have significantly improved the artist’s quality of life.
§ Consultation and technical assistance to schools and agencies
At a residential school for the deaf, the HKNC regional representative, deaf-blind project director, and school nurses screened 110 students for Usher syndrome. As a result, two students were referred to an ophthalmologist with a possible Usher diagnosis and ten others will be monitored for vision and balance problems. The students all learned more about Usher syndrome, and the educators were able to address classroom lighting, contrast, and other visual accommodations.
§ Professional development and in-service training
The reps often present at conferences, workshops, and specialized trainings. One rep recently worked with the HKNC National Training Team and an HKNC affiliate program to provide training to vocational rehabilitation counselors from both the deaf and the blind communities to increase collaboration and sharing of expertise when working with an individual who is deaf-blind.
§ Maintenance of the HKNC National Registry of Persons Who Are Deaf-Blind
This confidential census has several benefits. For example, statistical data is gathered for use in developing future policy and programs. Also, registry participants receive updates such as information about the new legislation that created the National Deaf-Blind Equipment Distribution Program.
§ Information and Referral
Each day brings a new set of questions and challenges across the desk of the regional representative. "How can I meet other people who have both vision and hearing loss? Where can I find special equipment for my home? Are there schools that train dog guides for people who are deaf-blind? My mother is losing her vision and hearing…who can help her stay independent so she can live in her own home? Who can teach me tactual sign language?" The reps are a great source of information for answers to these types of questions.
The regional representatives are an integral part of our overall program. For more information on the multitude of services they provide, or, if you would like to be added to the HKNC registry, please contact your regional representative.
The third year of the Washington, D.C. based Deaf-Blind Young Adults in Action (DBYAA) program proved every bit as exciting as the first two! This year’s group includes six remarkably diverse and talented participants:
Shannon Boelter (Egan, MN) is a self-published author and will attend Gallaudet University in the fall. Justin Gaines (Fair Oaks, CA) spent two years in Hungary with his military family where he learned Hungarian sign language. Justin is currently a student at HKNC and plans to attend the National Technical Institute for the Deaf in Rochester, NY. Anthony Garro (Chino, CA) graduated high school and attended the Davidson Program at the Junior Blind of America. Eduardo Madera (Powder Springs, GA) will be attending Gallaudet University in the fall. Tyler Clarke Kennedy Samuel (Nashville, TN) is pursuing a degree in vocal performance at the University of Evansville in Indiana. She has been a delegate to several leadership forums sponsored by the National Federation of the Blind and, as a member of Tennessee Students for the Blind, she served as student representative for the Mayor’s Advisory Council on Special Education. Jamie Taylor (Maplewood, MN), who holds a Master’s degree in Deaf Education from the University of Minnesota, is the technology and transportation specialist at the Commission of Deaf, DeafBlind and Hard of Hearing Minnesotans.
After reviewing the legislative and appropriations processes, learning about policy briefs, catching up on current issues in deaf-blindness and more, the six young adults, along with their six deaf-blind mentors from previous DBYAA groups, went into action! They visited the Department of Justice where they met with Mazen Basrawi, Council to the Assistant General for Civil Rights, and John Wodatch, Chief of the Disability Rights Section. They discussed the importance of support service providers (SSPs) with an emphasis on employment issues and greater independence brought about through effective communication. Their argument was so compelling that Mr. Wodatch agreed to issue a technical assistance statement to all the states to recognize SSPs under the Americans with Disabilities Act - bringing us closer to witnessing national recognition for SSPs. The young adults plan to follow up with Mr. Basrawi and Mr. Wodatch.
In addition, DBYAA met with officials at the Federal Communications Commission and the Department of Education as well as their representatives in the House and the Senate. They spoke about issues facing deaf-blind children hoping to influence future changes in the Individuals with Disabilities Education Act.
DBYAA continues to promote education for deaf-blind children, access to technology, and national recognition of SSP services.
This year HKNC celebrates the 26th annual Helen Keller Deaf-Blind Awareness Week from June 26 to July 2, 2011. The purpose of this week is to change the assumption that Helen Keller is the only recognizable person who is deaf-blind and to show the diversity, accomplishments, and potential of today’s deaf-blind community. This year’s national campaign focuses on people 55 years and better – including many “Baby Boomers” – and the Confident Living Program at HKNC which addresses the needs of this group.
Few are aware that today, due to the aging process, senior adults are the largest growing group experiencing both vision and hearing loss. Because of this increase, there is a greater need for additional supports and services to this community as well as to their caregivers. Many in this group are working, have active lifestyles, and don’t think of themselves as “deaf-blind.” However, their decreasing vision and hearing losses make certain adjustments necessary to continue an active and independent life.
The most common causes of vision loss in older adults are cataracts, glaucoma, macular degeneration, and diabetes/diabetic retinopathy. If an older adult experiences a loss of hearing along with a vision loss, the results can be devastating to them, their families, and their caregivers.
Check out the following article for more information on HKNC’s Confident Living Program.
For more info on how to participate in the celebration of Helen Keller Deaf-Blind Awareness Week, go to www.hknc.org
Paige Berry, coordinator of HKNC’s Senior Adult Services, has met and worked with hundreds of seniors over the years. This group, who typically had some vision and/or hearing, is now deaf or hard of hearing and legally blind due to a variety of factors including age-related illness and disease. Paige has heard their stories and knows the challenges they face. Through the Confident Living Program (CLP), she addresses these challenges and teaches senior adults about strategies, supports, and devices that will allow them to regain their independence and dignity.
The CLP is sponsored in partnership with state and local agencies and is customized to meet the needs of the participants. One option is for seniors to come to HKNC’s NY campus to participate in a 5-day program. This immersion experience allows the opportunity to meet others who are experiencing combined hearing and vision loss of all ages and to sample the total HKNC experience. If local training is preferred, CLP goes “On the Road.” Peers from within a particular state may congregate at a hotel, training center, or facility that can accommodate the group. During the training, seniors learn about assistive devices such as vibrating alerting systems, telephones with volume control, signature guides, and closed circuit TVs. They learn how to adapt their home environment to make it safe, and receive information on self-advocacy, elder law, community integration, emergency preparedness, technology, and more.
This program also provides a rich “hands-on training” opportunity for those in the field who want to learn more about working with this population. Participants are encouraged to invite a family member, significant other, or friend to join in part of the training giving them an opportunity to reinforce new skills and practices as well as learn how to be a positive support for the consumer. Several CLP participants were so empowered by the program that they established a support group in their local community. Many seniors feel a renewed energy and enthusiasm for life after participating in the program.
For more information, click on the link for HKNC’s Confident Living Program.
HKNC student Kim Paulk likes to say she’s “wired.” And to watch her in action with her iPhone, one can understand what she means! Recently, representatives from Apple came to the Center to get a better understanding of the needs of people who are deaf-blind. Along with other HKNC students, Kim gave them feedback on features that were useful. We’ve asked her to share some of the applications she uses to enhance her life. Please note that other smartphones may have similar access to the world of apps. Check with your carrier.
Replacing several bulky adaptive devices with just one that fits right into my pocket seems like something from a hi-tech James Bond movie. But it exists here and now with my iPhone! Its many accessible applications delight me because of their convenience which enables me to be more independent.
I have Usher syndrome type II and I’m rapidly losing the last of my vision. Computers have always been my “thing” and the thought of not having access to them is terrifying. Now with a screenreader called VoiceOver built into their operating systems, right out of the box many Apple products are accessible to a person who is blind! VoiceOver works with the apps that come on the phone including contacts, calendar, clock, weather, text messaging, and compass. A vibration alerts me to incoming messages, and I can set the alarm clock on the phone and put it under my pillow to wake me up! I have difficulty typing on the iPhone touch pad, so I use a wireless standard keyboard with a Bluetooth connection. As my vision decreases, I will be able to use a portable refreshable braille display, which easily clips on my belt, to access the same information.
There are many third party apps which I find useful. EyeNote TM is a free app for identifying US currency, and a bar code scanner called DigitEyes allows me to read the labels on the cans, spices, and boxes in my kitchen cabinet. DigitEyes also lets me program bar codes on washable vinyl labels with my voice which I then sew onto my clothing to help me identify my outfits. A digital magnifier allows me to apply my own make-up and a flashlight and light sensor helps me out in a dark room. I always recommend reading the reviews before downloading any app.
With all the neat apps for the iPhone constantly being developed, I am not worried about my future as a deaf-blind person because I know I will always be able to communicate with others, remain independent, and stay involved. Besides - I’m just plain having fun!
From Dorothy Walt, HKNC Northwest Regional Representative
Individuals who are deaf-blind may face communication barriers which prevent them from participating in community activities and leads to feelings of isolation. When people with a similar disability come together in a group to share information and experiences, it is often the case that a sense of belonging grows and friendships develop.
HKNC maintains a list of deaf-blind consumer organizations, support groups, and listservs from around the U.S. If you are interested in joining a group, contact your regional representative. If none exists in your community, your rep may be able to assist you in setting one up or check out the next article which has suggested tips on how to start one.
By Julie Somers and Mindy Joy Mayer
with Laura Thomas, HKNC North Central Regional Representative
In the early ‘90s, two Gallaudet University freshmen met each other and realized they shared something in common. “Whew, I am not the only one” was the feeling expressed between these two fast growing friends.
Julie Somers and Mindy Joy Mayer have Usher syndrome.
As they got older, they realized the tremendous support they received by sharing their mutual experiences. Feeling that others could benefit from a similar relationship, they decided to start a support group in the Chicago area. Then in 2006, they created a Yahoo listserv to recruit others with Usher syndrome. As the group added members, there were many questions such as where to hold meetings which were accessible by public transportation and had proper lighting and seating for communication? One gathering was held in a restaurant as it opened so they would get the table with the best lighting. Another meeting was in a private home but the living room walls were red and caused communication difficulties. Eventually they worked out these problems with creative solutions and modifications so that all participants felt comfortable.
The members in this support group have benefitted in many ways. They feel better about themselves knowing that there are others living with Usher and facing the same challenges. They can freely discuss issues and topics of concern knowing that no question is irrelevant. Child rearing, getting and keeping jobs, traveling independently, and information sharing are common discussion topics. Receiving differing perspectives on adapting and coping with vision changes has provided the members with valuable information. One participant learned how to use a cane in a comfortable setting with Mindy Joy’s support and is now ready to accept formal orientation and mobility training. The group has slowly evolved into working and volunteering on the Illinois Deaf-Blind Retreat – some even serving as committee chairs. As Julie observed, “This has created ample opportunities for the younger ones with Usher to develop leadership skills as well as learn how to use support service providers properly.”
Guidelines this support group used to get started:
1) Start small and invite others to join. Decide whether spouses/significant others and family
members will be included.
2) Identify your group and what topics to be discussed.
3) Consider transportation, accessibility, communication, and interpreting needs among all
participants and ask for their suggestions.
4) Each member takes responsibility for an activity.
5) Start with a single topic for each gathering and give all participants the opportunity to share
and gather suggestions.
6) Decide a date and time for the next gathering and confirm via email.
7) Include fun activities from time to time – go to a museum or a baseball game. Enjoy the
culture and culinary delights of your city.
Imagine the delight when the staff in HKNC’s regional office in San Diego were told that there was a bequest of $235,000 from the Adelaide Allen Endowment Fund, a community resource for receiving, managing, and distributing charitable funds in San Diego County! The specific intention of the bequest was to provide services to residents in San Diego who experience dual sensory loss. Robyn Chatten and Dylan Mann from the Foundation encouraged HKNC to write a proposal that would utilize this fund to develop SSPs (support service providers). SSPs provide much needed community access for people who are deaf-blind by providing transportation, human guide, and relaying visual and environmental information. The proposal was approved by the Foundation and the SSP program was officially established in October 2010 becoming the only paid SSP program in California.
Two all day training sessions were conducted in November 2010 for potential SSPs, with the help of two Deaf-Blind Young Adults in Action (DBYAA) leaders, Corrina Veesart and Kelvin Crosby. Corrina’s goal is to spread the word to local politicians and leaders about the critical need for SSP services to improve community access for herself and others who are deaf-blind. In December 2010, the program began matching SSPs with consumers, providing approximately 12 hours per month of SSP services to local residents who are deaf-blind.
Since the SSP program is only funded through 2013, a major task will be to secure on-going funding to ensure this program will be a sustainable entity for the community. A larger goal will be to continue to demonstrate the need for these essential services, and to established SSP programs in other states and communities, with the hope of state funded support.
Angie Llera has been championing the need for SSP services in the greater San Diego area since she attended the HKNC Confident Living Program several years back where she had the good fortune of working with some trained SSPs. In the following article, Angie describes the SSP services she is receiving and how beneficial they are to her.
By Angie Llera
Since I believe “it takes hope to cope”, I’ve always been optimistic about the future and being able to continue to be independent. I have been a landlady for over 50 years but occasionally had to hand the reins over to management companies to keep me on track because it was difficult to hear on the phone. And then along came the California Telephone Assistance Program and I was back in business, literally!
When my vision started deteriorating, I had a new set of problems. I had to learn to use the closed circuit TV and other types of magnification. I had to give up driving and learn to use buses and trolleys to get my shopping and business done. Suffice it to say, at my age, it took its toll on me. If I shopped one day, the next day I was exhausted - out of commission. And then along came the Helen Keller National Center in San Diego which is providing me with an SSP (Support Service Provider).
Since I’ve met my SSP Pedro, my world has changed for the better. I no longer have to worry about buying groceries, doing business with tenants, or shopping. Pedro attends Southwestern College across the street from me and is able to stop by if I need anything. We study nutrition at the grocery store and occasionally have lunches together. We did have to cut down on the dining out because of too many calories!
Pedro loves to learn. I enjoy teaching him sign language and taking him to different venues where he can interact with deaf-blind people. He’s learning about cochlear implants at my audiologist’s appointments. He wants to be a fire fighter and already has his medical technician’s license which makes me feel safe in case of an emergency. Oh, and did I tell you that he is a cracker jack with technology? He helps with all my devices when they go on the blink. He has shown me how his smartphone works so I just might have the confidence to learn texting and the internet on a cell phone!
Some dreams DO come true!
Born deaf, Mary became blind after graduating from high school in Mississippi. Although she attended a deaf school and learned sign language, her family was unaware of programs to help with her visual loss. So for two decades she was homebound - isolated with little or no socialization. She was then placed in a nursing home where staff was kind but didn’t have the skills to work with her. Mary became agitated and often aggressive. Eventually Mary’s story made it to the desk of Chancery Judge Margaret Alfonso, known for her compassion and tenaciousness! Judge Alfonso spent several years hounding state and local agencies to get Mary the training she so desperately needed but to no avail. Finally, the frustrated judge conveyed Mary’s story to her local Bar Association. Harry R. Allen, a litigation attorney, stepped forward and became Mary’s legal guardian ad litem … and the wheels were set in motion!
HKNC staff was contacted and, after several trips to see Mary, it was decided that she would enter the Center’s specialized PATH Program (Person-Centered Approach Toward Habilitation). Even though PATH had specially trained staff available around the clock, it was a tough transition for Mary. She became withdrawn. Through the person-centered process, the dedicated staff consistently offered communication on Mary’s terms and over time she began to trust people again. Mary gradually started conversing with staff through sign language, learned to use the closed circuit TV, and amazed staff with her ability to learn braille. She worked part-time in the community, and on-campus she sold her freshly baked cookies to staff.
After almost three years at HKNC, Mary had achieved enough confidence to return home. To ensure a smooth transition, a planning team was established with key members of Mary’s team at HKNC along with members of the Mississippi Deafblind Task Force. Millcreek Community Rehabilitation, the agency selected to provide support services in Mary’s home community, sent staff to HKNC to get acquainted with Mary and be trained about her particular needs. When Mary first moved to Jackson, MS, the HKNC team made frequent visits to observe her in her daily activities and made suggestions to the Millcreek staff. As Mary has become more comfortable in her new home, these visits have become less and less necessary.
Today Mary is living in her own apartment with a college student who is studying deaf education. She works in a local restaurant, loves to bowl and bake, and is particular about the color of her nail polish. Mary has the full-time support of staff from Millcreek who periodically checks back with her HKNC team to report on her progress and consult about any problems.
Recently an important visit was in order - Mary’s 50th birthday party! HKNC regional representative, Barbara Chandler and HKNC staffer, Mike Richards, were delighted to be among the special guests invited to the celebration – another milestone in Mary’s remarkable life.
Editor’s note: The PATH Program has been suspended due to financial constraints.
There wasn’t a cloud in the sky, a cool breeze was blowing, and a warm sun all added up to a picture perfect Sunday morning for the 15th Annual Helen’s Walk-A-Thon. A little over 250 walkers - young, old, and everywhere in between – came to the neighboring Sands Point Preserve bright and early for registration. A disc jockey from a local radio station provided lively music while coffee and a yoga class helped to wake everyone up.
Among the participants this year were teams from Adelphi University and Jericho High School. New York State Senator Jack Martins (R) 7th Senate District walked along with his two daughters. The youngest “walkers” enjoyed the scenery from their strollers while the oldest walker, a 90-year old woman, completed the course on her own two feet! A former HKNC student was on hand to offer his congratulations and even taught her a little sign language – much to her delight. As each person crossed the finish line, a cheering squad greeted and invited them onto the HKNC campus to enjoy refreshments. Several people who were unable to walk in Sands Point held their own “Helen’s Walk” in their neighborhood to help raise money for the good cause.
With the help of ALL of our fundraisers and volunteers – Helen’s Walk was a great success! We would like to give special recognition to the following for their support: The Mancino Family Foundation; Oticon; 95.5 WPLJ; Silent Call Communications Corp.; the Gabry Family; Robert Lozzi/AXA Advisors, LLC; The Community Synagogue Brotherhood; the Gilbert Family; and the Parrino Family. The money raised by Helen’s Walk will help HKNC to increase the programs and services provided to people who are deaf-blind.
It was an opportunity to express appreciation to the Center’s volunteers during National Volunteer Week in April. Following the theme, “Volunteers Have That Magic Touch”, special displays and decorations were made by HKNC students and staff. In addition, each volunteer received a certificate, a letter of appreciation, and a thank you gift from the Center. This year, milestone awards were presented to two volunteers for 25 years of service and another volunteer received recognition for 10 years of service.
At the Center, volunteers are in high demand! From teaching Asian cooking, knitting, and music to tutoring in various subjects including English and math, HKNC volunteers share their time and talents with the students on a one-to-one basis. They support students in pursuing their HKNC goals including practicing ASL and public speaking, balancing a checkbook, grocery shopping for independent living class, and working on a GED. Volunteers help the students stay fit and healthy by assisting them in the gym and going for walks around the campus. A trip into the community with a volunteer can be arranged when a student has errands such as going to the bank, library, or beauty salon. Sometimes it’s just for fun - grabbing a hamburger, enjoying an ice cream cone, or going for a breezy walk by the water. But it doesn’t stop there – volunteers assist staff in the art room, library, and other departments. They also participate across the country in our field offices helping with mailings and various programs.
Whether it’s supporting students, helping staff with projects, or lending a hand with recreational activities, volunteers contribute to the Center on all levels. Many come in to give back to their community while others look to develop skills or gain experience within a department that’s related to their field of study or profession. Most volunteers find their service to be enriching, inspirational, and so much fun that several have even become staff members!
To all HKNC volunteers, a BIG thank you for ALL you do!
June 26 - July 1: Helen Keller Deaf-Blind Awareness Week
August 1 - 12: Young Adult Summer Seminar
September 19 - October 7: Destiny, A Community Residence Seminar (Part 1 - Online)
October 17 - 19: Destiny, A Community Residence Seminar (Part 2 - Onsite)
September 26 - 30: Confident Living Program
October 3: HKNC's 5th Annual Golf Outing
October 17 - November 4: Adaptive Technology Seminar (Part 1 - Online)
November 14 - 16: Adaptive Technology Seminar (Part 2 - Onsite)
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