Winter, 2006   Number 10

Keeping In-Touch 

Newsletter of the Helen Keller National Center

Great Plains Region--IA, KS, MO, NE

Beth Jordan, Editor

                                               

Hello!

It’s been another busy year.  With HKNC, I continue to provide workshops, advocate for consumer needs and assist individuals with the application process to attend HKNC for evaluation and training. 

 

My family is healthy.  Our boys are 12 and 7 years old.  Madison is now in junior high school.  It’s been a good transition and he’s doing great.  He was selected to sing in the all-state choir this spring.  Tristan, our 2nd grader, could play with Legos 24-hours a day if permitted.  Life is good!

 

We have all been amazed at the media coverage of the natural disasters that occurred this past year...hurricanes, floods, tornados, wildfires.  Most people hope that those tragedies will never happen to them.  Most victims said the same thing.  To get more prepared, I have included a list of items to develop an “emergency kit” and resources to gather more information. 

 

Get prepared, develop a plan, and create a buddy system...simple steps to having a healthy and safe 2006!  Sincerely,

Beth Jordan

Beth Jordan, Regional Representative

Helen Keller National Center

 

National Information

AADBThe American Association of the Deaf-Blind Last year was big, but 2006 appears to be even bigger for AADB.  Their conference is drawing near.  It will be held June 17th - 23rd in Baltimore, Maryland on the campus of Towson University.  Registration for persons with vision and hearing loss starts at $695 (early bird prior to April 1st).  The theme is “AADB on the Move: No Deaf-Blind Left Behind.”  Watch their website for details and registration information at www.aadb.org.     

 

AADB’s publication, the Deaf-Blind American, will be distributed through email when possible, in addition to regular and large print and CD/disk.  Additional information from AADB will also be sent in a new monthly publication, AADB-E News in all of these formats.  To be added to the free distribution list, send a request to info@aadb.org.    

 

New officers were elected by the membership.  Congratulations to the winners: Art Roehrig, president (DC); Lee Clark, vice president (NC); Dr. Jeffrey Bohrman, treasurer (OH); and Marilyn Fernandez-Trader, secretary (NC). 

The AADB Office moved to a new location in April, 2005.  The new contact information is 8630 Fenton Street, Suite 121, Silver Spring, MD 20910.  Phone numbers remain the same:   301-495-4402 TTY, 4403 voice, and 4404 fax. 

See you in DC in June!

 


HKNC Update  Director Joe McNulty is responsible for running the Helen Keller National Center, but did you also know that he spends much time in Washington, DC?  He is heavily involved in monitoring federal funding and advocating for legislation that directly affects children and adults who have vision and hearing loss.   Some of the issues that will be addressed this year include the reauthorization of the Workforce Investment Act (WIA) which impacts the vocational rehabilitation system; and the federal election of senators/representatives in November, 2006.  Joe was recently asked what he believes is the biggest obstacle facing people who are deaf-blind.  He responded, “having access to information and communication and the need for more qualified personnel who are trained to work with deaf-blind people.”  He stressed that deaf-blind people need to advocate for an adequate number of interpreters, SSPs and other support staff to increase their access to the community.  Thanks for working tirelessly on our behalf, Joe. 

 

NEW!  Many of you know Bapin, the deaf-blind technology instructor at HKNC.  He is now taking his skills “on the road.”  Bapin is available to come to your community and provide group training to learn about various types of technology used by deaf-blind people (consultation) OR he can provide training to one or more individuals around a particular piece of equipment (evaluation).  What seems to work best is working with others in the community for cost sharing purposes.  The consultation is $300/day plus transportation, lodging and meals.  The technology evaluation is $350/full day and $250/half day plus expenses.  For more information, contact Bapin at HKNC by calling 516-944-2783 TTY or email anindya.bhattacharyya@hknc.org.   

 

Senior Adult Programs  HKNC offers specialized skills training for deaf-blind adults all year long.  However, for senior adults, there are two 2-wk programs specifically geared to persons over the age of 55.  The first session, March 20 - 31, 2006 is for adults whose communication is primarily using speech and their remaining hearing.  The second session, October 2 - 13, 2006 is for seniors who communicate using sign language.  Learning from HKNC staff as well as other peers is a very powerful event.  The cost is $1600 which includes tuition, room and board for the two weeks.  It’s a small price to pay to learn new ways of doing things, becoming more independent, and regaining your confidence in everyday activities.  If you have an interest in either of these sessions, please contact me ASAP to initiate the application process.  These annual programs are small in number to insure more individualized instruction. 

 

NFADB–National Family Association for Deaf-Blind The theme for this year's NTAC/NFADB Parent Workshop will be “Advocacy” to be held in July, 2006.  Check the NFADB website for dates/location to be announced in the spring at www.NFADB.org.  The NFADB Board received legislative training from the American Foundation for the Blind in November, 2005 and will be addressing legislative activities in the upcoming year.

Finally, NFADB now has a member Listserv allowing members to stay in touch.  Directions can be found on the website.  Jacque Clifton, our NFADB Regional Director and parent of a deaf-blind child, has started a new company, Advocate Care Services, Inc.  It provides payroll and Medicaid billing services for people in Kansas receiving services under the Medicaid MR/DD and physical disability waivers.  Contact Jacque at 316-461-3201 voice or email advocatecare@cox.net.   

Note: Products, services or activities listed in this newsletter do not imply endorsement by HKNC.  They are provided for informational purposes only.

 

New Stuff This section contains a number of new ideas, resources, products and websites. 

 

Self Help for Hard of Hearing People (SHHH) has a name change.  The Board of Trustees voted to change the name to Hearing Loss Association of America (HLAA).  Feedback about the change is good.  Deaf friends share that the old name suggests that people should keep quiet about their hearing loss (shhh!) and that it did not represent Deaf people, only hard of hearing people.  Despite the name change, the message of the organization founded by Rocky Stone remains the same: “Hearing loss is a daily challenge you can overcome.  You do not have to hide your hearing loss.  You do not have to face hearing loss alone.”  For more information or to find a chapter near you, contact HLAA at 301-657-2248 voice, 301-657-2249 TTY or www.hearingloss.org.

 

Talking Household Thermostat   This nifty new gadget called the Kelvin Talk-a-Therm will tell you the settings and can be programmed with speech recognition to understand your voice.  It was developed by Action Talking Products (ATP) in partnership with the National Federation of the Blind (NFB) and will control heating and cooling (but it does not work with a heat pump).  The device can be ordered by mail, phone or on-line for around $130 plus $11.95 shipping.  Contact ATP at 800-537-2118 voice or get more information on their website at www.actiontalkingproducts.com. (from Voice of the Diabetic, 20(3), Summer, 2005)

Preparing for a Disaster   Much discussion and work has been focused on emergency preparedness since the 9-11 disaster in 2001.  That work intensified with Hurricane Katrina.  There are many publications and resources that are available to assist you in developing a plan for your family and place of work.


The Boy Scout motto of “Be Prepared” certainly seems to apply here.  It may seem silly or over-anxious, but each of us should use a plastic storage bin to gather these items: 1) bottled water (three gallons per person in small, easy-to-open bottles); 2) non-perishable food such as canned tuna, granola bars, beef jerky, fruit cups, etc.  3) several flashlights (by the bed and around the house); 4) first aid kit; 5) shoes under the bed (to protect feet from broken glass); 6) fire extinguisher; 7) battery-operated radio or TV; 8) whistle or loud bell (it’s easier than yelling to signal for help); 9) garbage bags (for personal waste); 10) emergency health information card (contact information, blood type, health insurance, emergency contacts, medical conditions, and communication methods); 11) change for a pay phone, even if you carry a cell phone; 12) mask (to cover face in smoky/dusty environment); 13) can opener for food; and 14) extra batteries. 

Additional items may be needed to accommodate your vision and hearing loss or any other disabilities.  Some of these items might include: 1) hearing aid batteries; 2) notepad/pen for communication; 3) communication device and charger; 4) portable TTY; 5) portable magnifier; 6) extra white cane; and 7) guide dog supplies (food, water, medication, copy of service animal license, extra leash, toys/bed).  (from ilruNetwork, October, 2005; VisionConnection’s “Your Safety Checklist,” July 26, 2005; and Are You Ready, 1(1), September, 2005) 

As you know, federal and state governments have spent millions of dollars helping folks get ready.  Individuals with disabilities have an even greater need to make sure they are included.  There are many newsletters and websites that have been developed.  Here are some good ones:


                    U.S. Department of Homeland Security’s website: http://www.ready.gov with information on preparing a kit, making a plan and being informed;

                    San Francisco Bay Area Emergency Preparedness Coalition’s website: http://preparenow.org supporting special needs and vulnerable populations in disaster;

                    Community Emergency Preparedness Information Network (CEPIN) Project’s publication, “Are You Ready?” and future website (see below for contact information);

                    Emergency Preparedness and Response for Individuals with Disabilities Act of 2005 (pending legislation);

                    Check with your local community (city office, town hall, or county office to determine what supports are in place; see what they need to do to include your special needs.  Review this website for contact information in your state: http://www.nod.org/EPIResources/interactive_map.html. 

Finally, when considering any type of disaster, talk with family, friends and neighbors.  Find out what plans they have in place.  Determine if your plans fit into theirs.  Have a “buddy system” so that you can reach each other during a disaster.  It will give all of you a sense of security and purpose.

There are hundreds of resources being developed to aid folks during times of emergency.  The Community Emergency Preparedness Information Network (CEPIN) Project was developed with a grant from the US Department of Homeland Security to Telecommunications for the Deaf and Hard of Hearing, Inc. (TDI).  CEPIN develops model community educational programs for consumers who have a hearing loss.  It also has excellent fact sheets for natural disasters and an outstanding monthly e-newsletter titled “Are You Ready?” to address emergency preparation.  To subscribe (free) or download fact sheets, go to www.cepintdi.org. 

 

I Need an SSP!  That’s what many people told AADB during a national survey.  An SSP is a support service provider or someone who assists persons who have vision and hearing loss to get around the community and assist with communication with clerks and the public.  AADB membership agreed that this was their #1 need in their home communities.  Unfortunately, SSP services are provided in only 12 major cities with five statewide programs.  (For a complete listing of SSP Programs nationally, go to HKNC’s website at www.hknc.org).  SSP services have been a “hot topic” nationally this last year as many cities/states are trying to establish SSP services and the National SSP Pilot Project continues to pursue federal funding to establish three pilot sites with plans for expansion.  Unfortunately, this has not been the best time to seek federal aid.  So what does this mean for you?  Establishing SSP services requires grassroots efforts by people who are deaf-blind.  With your assistance, people will sit up and listen.  Check around and see what efforts are being done in your community or state.  Get involved! 

 

So you live in a rural community and have never heard of the term “SSP”?  What then?  Across this country, deaf-blind individuals are not waiting around for services to find them...they are creating their own SSP team.  Here’s how they are doing it.  1) Talk to friends, family, interpreters in your town/county.  Tell them your situation.  You need to get to the pharmacy, help reading your mail, assistance when shopping for groceries, or a ride to the barber/beauty salon.  You know your needs.  2) Then ask who can help.  Ask for volunteers, barter a service that you can provide or offer to pay for their gas/lunch.  That’s up to you to arrange.  3) Request assistance from a service provider in your state to provide a training to your eager new SSPs about safe guiding, communication and empowerment (remember, you make the decisions, not the SSPs).  Do you need them to know sign language?  Teach sign language classes.  4) Once your system is established and you have volunteers in place, give them praise.  Thank them often.  People are eager to help out a friend.  You do not have to wait for a formal SSP program.  Establish one for yourself!

 

Collaboration between AADB and RID   During the 2005 Conference of the Registry of Interpreters for the Deaf (RID) Jamie Pope, AADB executive director and Susanne Morgan, RID Deaf-Blind Special Interest Group chairperson submitted a formal motion during the RID business meeting.  It called for a national “task force to address the imminent communication needs of the deaf-blind community” and passed unanimously!  Follow this historical movement in the AADB website and publications. (from The Deaf-Blind American, 44(3), Oct-Dec,05)

 

Helen Keller Spotted in Washington, DC  A statue of Helen is being created by nationally recognized sculptor, Edward Hlafka.  The statue will depict Helen as a child by the water pump when she learned to communicate.  It is scheduled for completion in June, 2006.  Make a point of visiting it at the Capitol Building in Washington, possibly in conjunction with the AADB Conference.  (from HKNC’s In-Touch, October 3, 2005)

 

Labels for Literacy is a simple program that will send you labels in Braille for household items, foods and beverages, in order to increase the usage and understanding of Braille, providing equal access for Braille readers.  Sheets of self-stick Braille labels can be requested at no cost by calling 866-325-2235 voice or make your selection on-line at www.labelsforliteracy.com.

 

Have your kids or grandchildren taken part in the wristband craze?  Cyclist, Lance Armstrong began the trend with his bright yellow “live strong” wristbands.  Here’s one more for a worthy cause.  The Foundation Fighting Blindness (FFB) has created a clear, glow-in-the-dark band with Braille lettering that says “Our Vision Is Clear.”  The wristbands are $3.00 and sold in packages of ten ($30.00) with free shipping/handling. Demonstrate your support for research for diseases such as Macular Degeneration and Retinitis Pigmentosa and Usher syndrome.  Contact FFB at 800-683-5555 voice or on-line at www.foundationfightingblindness.org.  Makes a great gift!

 

Do you want to send a greeting card to a Braille reader?  Here’s a company that will personalize all kinds of greeting cards in Braille and print and include your name as well.  The cards are very reasonably priced as well (far less than card store prices). Send your request to Vanduzer Braille Productions at 4903 North River Vista Drive, Tucson, AZ 85705 or email Mr. Roma Vanduzer and get more specific information at vanduzer@earthlink.net. (from The Missouri Chronicle, 44(3), November, 2004)

 

Travel Aids

HKNC O&M instructor, Gene Bourquin has created/researched a street crossing card that efficiently helps deaf-blind travelers solicit assistance in crossing busy intersections.  For a sample or to request more information, contact Gene at 516-944-8900 voice, 516-944-8637 TTY or OandMHK@msn.com. 

 

Deaf-Blind Explorers Plan Alaskan Cruise!  Ever wanted to see this beautiful part of the country?  This group is planning an unforgettable vacation in the summer of 2007.  Exact details will be shared this summer.  For more information, see their booth at the AADB Conference or email Lynn Jansen at deafblindtravel@aol.com.

 

The Ultracane by Sound Foresight Limited is a new, electronic travel aid.  It was inspired by the way bats navigate in darkness.  It models the traditional, long white cane, but uses ultrasonic echoes to locate objects in front of and near the shoulders/head of the person using it.  The handle appears similar to a vacuum cleaner.  When used by a person who had vision and hearing loss, he felt it provided additional feedback about the environment.  The vibration patterns felt in the hand when nearing objects helped make up for the information he could not see and hear.  Users should be skilled in using a long white cane, have good tactile sensitivity, and sufficient hand and arm strength.  One last requirement...money.  The Ultracane is not cheap.  It sells for about $840.00.  Still interested?  You can talk with your Orientation and Mobility instructor or check the company’s website for more details at www.soundforesight.co.uk. 

 

Deaf-Blind Little Ones

No-Cost Infant Eye Assessments  A new program called InfantSEE was established by the American Optometric Association in partnership with The Vision Care Institute of Johnson & Johnson Vision Care Inc.  Former President Jimmy Carter is the national spokesperson.  This public health program will provide a one-time, comprehensive eye assessment to infants prior to age one to increase early detection of potential vision problems.  This assessment is free regardless of family income.  One in every ten children is at risk from undiagnosed eye problems.  To learn more about InfantSEE, call 888-396-3937 voice or visit www.infantsee.org. 

 

Deaf-Blind Triplets?  Yes, you read it correctly.  There’s a family in Texas who have five-year old triplet daughters.  The girls were born prematurely and all have complications from Retinopathy of Prematurity (ROP).  However, it affected each one differently.  Sophie can see colors, shapes and has tunnel vision.  Zoe has light perception.  Emma can see nothing.  Their hearing loss is due to strong antibiotics that were administered when they were in the NICU.  Yet their deafness occurred when they were nearly two years old.  The setbacks they faced with their hearing loss were huge.  Shortly after that, the girls each received a cochlear implant.  This has allowed them to continue their learning auditorally, not simply tactually.  They are using total communication (sign language and spoken language) for their education.  Their parents feel blessed to have three beautiful girls, but challenged because having three means that they cannot provide 100% of their time to each child.  Still, this family is charting new territory.  It will be interesting to watch them grow into young adults. See the full article at http://deafness.about.com/od/deafblind/a/dbtriplets.htm (from About, Inc., March 30, 2005) 

 

Employment-Related Links Here are a few resources to help in your job search.

JAN E-News is the quarterly newsletter of the Job Accommodation Network–a service of the US Dept of Labor.  It provides job accommodation tools and techniques, as well as ways to improve employment opportunities for people with disabilities.  For more information, go to http://www.jan.wvu.edu/. To subscribe, send an email to subscribe@jan.wvu.edu.

 

Finding a job can be a challenge and sometimes overwhelming.  To make the process more manageable, the Institute for Community Inclusion created a “30-Day Placement Plan: A Roadmap to Employment.”  Authors Condon, Gelb, and Gould walk you through this step-by-step process.  Go to http://www.communityinclusion.org/publications and click on ‘new publications.’ (from Monday Morning in Washington, DC, 5(41), September 26, 2005, mmwdc@ndss.org)

 

Preparing the Workplace for Everyone is an on-line resource that provides information on developing emergency preparedness plans that include the needs of employees with disabilities.  It’s a free publication available at www.dol.gov/odep.  To request a copy by mail, contact the Department of Labor by calling 866-633-7365 voice or 877-889-5627 TTY. (from Monday Morning in Washington, DC, 5(30), July 25, 2005, mmwdc@ndss.org)

 

Partners in Employment is a self-study course designed to help people with developmental disabilities find meaningful employment and jumpstart their careers.  This free on-line course was developed by the Minnesota Governor’s Council on Developmental Disabilities.  It includes individual lessons, exercises, assignments and exams to test your understanding.  The course takes approximately six hours but there is no time limit for completion.  For an orientation or to take the course, go to http://www.partnersinpolicymaking.com/employment/.

 

Is VR a mystery?  Because Vocational Rehabilitation services are so individualized, what one person receives is often quite different from another.  Many people expect that VR will “find a job” but many times, they provide the resources and supports for the individual to find their own job.  Want to understand more about VR?  Check out “Getting the Most from the Public Vocational Rehabilitation System” at this website:  http://www.communityinclusion.org/publications.  Click on ‘tools for inclusion.’  To order a free copy by phone, call the Institute for Community Inclusion at 617-287-4300 voice or 4350 TTY.  Specify the item number #TO19, name and quantity (less than five are free).  Alternate format publications are available.  (from Monday Morning in Washington, DC, 5(4), January 24, 2005, mmwdc@ndss.org)

 

Job Leads  The National Organization on Disability has put together a listing on their website of national and regional job assistance and recruitment agencies.  This list could provide a number of job leads and connections for anyone seeking employment.  Go to www.nod.org and click on job-related links.  You will find a variety of other helpful resources there including “how to write a resume,” interviewing techniques and success stories. 

 

ADNET Systems received the contract from the Department of Homeland Security to identify qualified individuals with disabilities for federal jobs.  Last year, the Equal Employment Opportunity Commission found that the number of federal employees with severe disabilities had declined by nearly twenty percent over the previous decade.  For specific qualifications or to seek more information, contact ADNET by calling their Reston, Virginia office at 703-709-7218 voice or check their website at http://www.adnet-sys.com.

 

Looking for employment in your home state?  Let’s say you live in Kansas.  Go to http://www.kansas.jobs.net to search for leads by town or vocation.  The site also has a variety of employment resources. Don’t live in Kansas?  Use the same format for the website and the state name that interests you. 

 

Employment Success Stories   Previously deaf, Father Cyril Axelrod began a new venture after losing all of his sight over a two year period.  He took aromatherapy courses from Peterborough Regional College near London, England.  He used several supports to complete his assignments.  Some of these included an interpreter (called a tutor in his country, using deafblind manual communication), a notetaker, lecture notes in Braille, and extra time taking tests.  When new massage techniques were taught, the tutor would demonstrate the techniques on Fr. Cyril.  Then when it was his turn to give the massage treatment to another student, the tutor placed her hands on Fr. Cyril’s and directed him to make the right movements.  He learned very quickly and was often asked to demonstrate the techniques to the other students.  After two years of study which included some business and anatomy courses, Fr. Cyril is developing his aromatherapy service for deafblind people.  He plans to use it in a ministry for healing to help them overcome fears caused by deafblindness.  (from Outreach, published by the Catholic Deaf Association, Manchester, England, Issue 35, December, 2003)

 

Mitch Shapiro has had a variety of work experiences in his life including volunteer and president of the Long Island Affiliate of the Foundation Fighting Blindness (FFB) for almost ten years.  It was during that time that Mitch realized his natural gift to motivate and inspire people.  He also developed several highly successful and creative fundraising events.  In 2004, this 52-year old man with Usher syndrome 2 decided to use his talents to create his own nonprofit organization called the Foundation for Sight & Sound.  His company is committed to creating a world in which people with vision and hearing challenges can realize their full potential to live lives of unlimited possibilities.  He believes that everything we do is a choice.  He tells others, “Don’t give in, don’t give up, give back.”  For more information about Mitch or his company, go to http://www.foundationforsightandsound.org.

 

On-Line Resources

ASL Video Dictionary Can’t quite remember a sign or need to practice your receptive skills?  Try this new fun website where you can see thousands of signs and conversational phrases demonstrated by real people in short video clips.  There is also a QuizMe section to practice what you have learned.  Other unique features include songs signed, fingerspelling practice and games.  Some of the signs are regional to Texas, but overall, it’s a valuable site!  Check it out at www.aslpro.com.

 

Anne Sullivan Macy On-Line Museum Best known as Helen Keller’s teacher, Anne’s achievements were far ahead of her time.  Mark Twain referred to her as a “miracle worker.”  The American Foundation for the Blind (AFB) has created a gallery of photos, letters, sound recordings and artifacts in tribute to her life.  Go to www.AFB.org/annesullivan. You can change the size/color of the text and background to meet your vision needs as you read through the information about Sullivan’s life. 

 

Person Centered Planning Resources There are a variety of on-line, self-study courses and planning tools that have been developed.  Person centered planning is a process-oriented approach that focuses on an individual by using his/her strengths and interests to define direction in the person’s life.  Although the process requires effort, it uses a team approach to increase the effectiveness.  Many of these tools can be used to obtain employment as well.  It’s an outstanding process; one with amazing results.  Here are just a few of the web links: http://www.ilr.cornell.edu/ped/tsal/pcp/index.html titled, “The Person-Centered Planning Education Site” from the Employment and Disability Institute at Cornell University; http://www.vcu.edu/rrtcweb/techlink/courses/course3/opening.html titled “Person Centered Planning Self Study Course” from Project TechLink at the Rehabilitation Research and Training Center on Workplace Support based at Virginia Commonwealth University; and http://communityinclusion.org/publications/indexb.html titled “More Than Just a Job: Person-Centered Career Planning” from the Institute for Community Inclusion based at the University of Massachusetts Boston. (from Monday Morning in Washington, DC, 5(52), November 21, 2005, mmwdc@ndss.org)    

 

The Social Security Administration (SSA) has placed its   applications on-line for those interested.  In addition, they have a variety of fact sheets, worksheets, and instructional materials to explain the benefits process.   Go to www.socialsecurity.gov.  

 

For People Over the Age of 55  There’s a new website to assist senior citizens with low vision with maintaining independence.  Articles discuss the benefits of vision rehabilitation, frequently asked questions, and resources for seniors who want to maintain an active and independent lifestyle.  The site is very “vision-friendly” as well, allowing you to increase the font size, reverse the polarity (white text on a dark background to decrease glare), and hear spoken text rather than reading it.  This site was sponsored by the Institute on Aging and the National Library of Medicine with contributions by the National Eye Institute–all members of the National Institutes on Health.  Www.nihseniorhealth.gov is the website and it is titled NIHSeniorHealth.  If you are interested but don’t have a computer, ask your kids or grandkids to help you or go to any public library and ask for assistance.  You’ll love having the world at your fingertips! 

 

Leadership Training  Are you skilled in “Making Your Case”?  If not, maybe you might be interested in a self-paced, interactive, learning program that will help you effectively “tell your story” to policymakers, construct letters/emails, conduct productive board meetings, and offer testimony.  This free program was designed by the Minnesota Governor’s Council on Developmental Disabilities for use by people with disabilities, family members and concerned citizens.  It takes only three hours to complete.  It’s available on-line anytime at http://www.partnersinpolicymaking.com/makingyourcase.

 

Listservs  There are several new computer Listservs.  Every time you send an email, everyone on the List receives it.  You can ask questions, receive feedback and give your input to others about the group topics.  The volume of email from the Listserv will depend on how many people participate in the discussion.  With most Lists, you can request a daily digest format to reduce the volume of email. 

 

Deaf-Blind Spice of Life Just as spices add more flavor to foods, personal interests and life experiences make life more exciting!  This new group of deaf-blind people shares stories, exchanges helpful tips, swap recipes and provide support to one another.  To subscribe, send a blank email to DB-SpiceofLife-subscribe@yahoogroups.com.   

 

SSP Listserv This group is open to SSP program coordinators, SSPs, deaf-blind individuals and other interested people.  Whereas SSP services vary greatly across the country, topics discussed relate to development and provision of SSP services.  To join, send a blank email to SSP-subscribe-request@tr.wou.edu. 

 

Deaf-Blind Spousal Support Group There are numerous support groups for persons who have vision and hearing loss.  Now there’s a new one for their spouses.  Learn/share experiences with other spouses/partners.  To subscribe, send a blank email to DB-Spousal-Support-subscribe@yahoogroups.com. 

 

Diabetes List   A new list has formed to discuss blindness and diabetes including topics such as diet, healthcare, diabetes control, and assistive devices.  It is sponsored by the Diabetes Action Network, a division of the National Federation of the Blind.  To subscribe, send a blank email to diabetes-talk-request@nfbnet.org.  Put “subscribe” in the subject line. (from Voice of the Diabetic, 20(4), Fall, 2005) 

 

DB Techies This existing Listserv has “moved.”  They are no longer located under Topica.com, instead they are run under Western Oregon State University.  To subscribe to DB Techies, send a blank message to dbtechies-subscribe-request@tr.wou.edu.  

 

Publications 

There’s a new fact sheet for families who just learned their child has a hearing loss (regardless of age).   Opening Doors: Technology and Communication Options for Children with Hearing Loss was developed by the US Department of Education.  This resource can be read on-line or downloaded from their website in a variety of formats, all of which are free.  The keys are early identification and intervention services from qualified providers.    is the site or call 800-872-5327 voice or 800-437-0833 TTY for a copy by mail.  (from Reference Points, Resources for Families part 2, September 7, 2005, )

 

“My Friend, You Are Legally Blind: A Writer’s Struggle with Macular Degeneration” by Charles Champlin tells of one man’s adjustment to this life-changing vision loss.  A writer his entire life, Champlin talks to readers who face this same struggle.  It can be purchased/ordered from any bookstore or on-line (list price is $8.95) but should also be available at your local library in print, large print or on audiotape.  If it’s not available, ask if it can be borrowed from a neighboring library. 

 

Interested in a book about person-centered planning instead of an on-line resource?  Here’s a good one!  The authors, John O’Brien and Beth Mount have worked in this field for years, and Beth Mount has used these concepts with young adults who are deaf-blind.  Titled “Make A Difference: A Guidebook for Person-Centered Direct Support,” this book is available for $37.80 plus $5.00 shipping/handling from Inclusion Press by calling 416-658-5363 voice or email (from Monday Morning in Washington, DC, 5(43) October 3, 2005,

 

Interpreting Strategies for Deaf-Blind Students: An Interactive Training Tool for Educational Interpreters   This manual and DVD were designed to train interpreters to work with students who are deaf-blind.  There are eight modules, each followed by a self-check quiz.  It was developed by Susanne Morgan, well-known interpreter/consultant and is available for $15.00 from the Ohio Center for Deafblind Education (OCDBE), 4795 Evanswood Drive, Suite 300, Columbus, OH 43229 or call 614-785-1163 voice.  It is also available for loan from DB-Link by calling 800-438-9376 voice, 800-854-7013 TTY or email

 

Are you a Braille reader?  The Braille Superstore’s mission is to enhance appreciation of Braille through the wide circulation of high quality, reasonably-priced Braille books for children and adults. They also sell gadgets in order to learn Braille and gifts for the Braille reader in your family.  It’s all available by calling 800-987-1231 voice or perusing   

 

There are many E-books or books on-line that are available free or for a minimal cost.  Some people have difficulty reading materials in regular print.  E-books allow the reader to change the text to meet personal vision needs. There are a number of websites including www.infomotions.com/alex2, www.selfknowledge.com, and www.bookrags.com/ebooks. 

 

HEATH Electronic Newsletter   The HEATH Resource Center is the national clearinghouse on postsecondary education for individuals with disabilities.  It is housed and run by George Washington University.  The quarterly newsletter offers a variety of resources related to scholarships and other financial aid, assistive technology and other tools to achieve success at the college level.  Subscribe at http://heath.gwu.edu.  Click on “mailing list” in the lower right-hand corner of the page.

 

Research: Medical, Social and Community

Five-Year Project to Study Persons Aging with Hearing and Vision Loss (PAHVL) “Update”

This study, now in its fourth year, has collected a great deal of data from the 410 participants who are over the age of 55 and have both vision and hearing loss.  They have gathered the data through surveys, informal interviews and focus groups.  This process continues but some preliminary findings can be made: 1) older adults with vision and hearing loss need more information as they are often unaware of services, supports, resources and funding available; 2) service providers need more information about how to serve this population; 3) transportation is a critical concern for many seniors; and 4) loss of independence and lack of housing options are also issues they must address.  Conferences and workshops to provide training to service providers and consumers have been organized.  For more information, please contact B.J. LeJeune, project director at 662-325-2001 voice, 662-325-8693 TTY/videophone, or bjlejeune@colled.msstate.edu. (from Deaf-Blind Perspectives, 13(2), Winter, 2006)

 

New Usher Gene Identified   Researchers have identified a gene mutation (called R245X) that accounts for a large portion of Usher syndrome in the Jewish population.  This finding does not provide a cure.  Instead, it aids in early detection so children can learn alternative communication methods and life skills.  This research was a collaboration between the National Institute on Deafness and other Communication Disorders (NIDCD), the Mount Sinai School of Medicine, the Sackler School of Medicine at Tel Aviv University, and the New York University Medical Center. (from EHDI E-Mail Express, by the American Academy of Pediatrics, February, 2005)

 

Retinal Implant  Scientists in Germany and Austria began clinical research studies in 2003 and 2004 to test a device that combines a retinal microchip and special glasses with an integrated camera and a belt with microcomputer.  The combination causes visual information received by the glasses to be converted to electrical pulses by the belt to stimulate the person’s optic nerve.  Of the 20 participants in the study, 19 reported an increase in visual perceptions.  German-based IIP Technologies has begun the process to obtain approval from the US Food and Drug Administration (FDA).  (from Information Society Technologies-IST website, June 2, 2005)

 

Smoking Doubles Risk of Age-Related Macular Degeneration (AMD) A study performed in Britain showed that smokers (age 75 years or older) were twice as likely to have AMD, which causes blurring of central vision.  This condition affects one’s independence including the ability to recognize faces, read and drive.  In the United States, AMD affects 10-15 million people.  So spread the word...stop smoking and preserve your vision.  (from VisionConnection, an e-publication of the Lighthouse International, April, 26, 2005)

 

Prevention of AMD?  A study of rheumatoid arthritis patients in Canada who were treated with non-steroidal anti-inflammatory drugs (or NSAIDs) showed they were ten times less likely to develop age-related macular degeneration (AMD).  Of the 993 patients in the study (all over age 65), only three had developed AMD.  These NSAIDs appear to have many benefits including prevention of bowel cancer and Alzheimer’s disease.  However, these drugs are not without side effects, some of which include upset stomach, ulcers, and stress on the kidneys.  Researchers at the University of British Columbia and University of Saskatchewan stress that further study is needed before NSAIDs can be used to treat AMD.  (from VisionConnection, an e-publication of the Lighthouse International, June 10, 2005)

 

Another Drug for AMD   Lucentis, an injectable drug by Genentech, Inc. has proven to increase visual acuity by 95% in the clinical trial with 716 patients.  This is significant when compared to the other two drugs currently on the market Macugen (by Pfizer/Eyetech) with 70% and Visudyne (by Novartis) with 67% stabilization/improved vision. Genentech will now approach the FDA for approval. These drugs are being used to treat the wet form of AMD. (from The Wall Street Journal, pg D4, May 24, 2005)


 

Gene Silencing Scientists have begun clinical trials to inject genetic material known as “double stranded RNA” into the body where it attacks defective genes, silencing them.  Unlike other experiments which change genetic makeup, gene silencing uses the body’s genetic material to its advantage.  It shuts down malfunctioning genes causing any disease, e.g. Alzheimer’s and AMD.  Patients with AMD at the Retinal Associates of Cleveland (Ohio) are a part of the study which will last two years.  The website with additional information is http://www.retina-doctors.com, click on ‘research’. (from CBS Broadcasting, Inc., January 13, 2006)

 

Diabetes and Your Vision   Over 20 million people in the United States have diabetes, and a quarter of them don’t even know it.  Managing your diabetes is hard work.  Yet because diabetes can cause vision loss and hearing loss, controlling it is a must.  Debra Sokol-McKay (faculty member at the Pennsylvania College of Optometry) wrote an excellent article for a publication called Sharing Solutions.  In it, she identifies several vision rehabilitation principles (organization, contrast, lighting and glare control) that can be used to perform diabetes-related tasks.  Some of these include: 1) placing all testing supplies on a solid-colored tray with a rim to keep things from rolling away; 2) when measuring insulin, place the syringe against a white surface so the black plunger and markings have contrast; 3) use a desk lamp rather than overhead lighting to increase clarity; 4) place blood glucose records in an accessible format (use large print on the computer, dark marker when writing, or on cassette tape).  For more great tips, request to be added to the mailing list for Sharing Solutions from the Lighthouse International by calling 800-829-0500 voice or on their website www.lighthouse.org. (Sharing Solutions, Fall, 2005)

 

Legislative Update

Tax Credit for Purchase of Hearing Aids   To borrow a phrase from the Energizer Bunny, “It’s still going!”  Yes, the legislation (H.R.414 and S.1060) is still pending approval in Congress.  Last year it had over 50 co-sponsors and currently it has 88 in the House and 13 in the Senate.  If passed, the Hearing Aid Assistance Tax Credit Act will provide up to a $500 tax credit per device toward the purchase of hearing aids.  It can be used on any type of hearing aid with any professional provider, by an individual over the age of 55 or a parent purchasing an aid for a dependent child.  Stay tuned for the outcome of this legislation.   Visit the Hearing Loss Association of America (HLAA) website for the latest information at

 

Assistive Technology

Hearing Aid Insurance?  Did you know that you can insure hearing aids against loss or theft with a rider on your home insurance policy?  When considering this option, carefully examine exactly what is covered.  For example, “the dog ate it” or “it accidentally was flushed” probably won’t meet the criteria.  Go to http://www.listen-up.org/haid/ha-insurance.htm for more information. (from DB Star, newsletter of DB Central Michigan Services for Children and Young Adults Who Are DeafBlind, summer, 2005)

 

Cell Phone Accessibility New Federal Communications Commission (FCC) regulations require that cellular service providers and manufacturers make cell phones that can be used with hearing aids and cochlear implants.  This legislation was effective September 16, 2005.  Does that mean that all cell phones will be compatible? Doubtful.  Plus, hearing loss and hearing aids are highly individualized.  Do some research before you buy.  Investigate the websites of cellular companies that have the best coverage/service in your community.  Look under “accessibility” for specific phones, services, and downloads that are available to increase compatibility.  Then, test out cell phones in the store with your hearing device before making a purchase. Some types of additional services include voice recognition functionality (to operate the phone); hearing aid/CI compatibility; TTY compatibility; Bluetooth-enabled technology (to allow wireless, hands-free option when using a hearing aid); large font displays; adjustable contrast screens; various ring tones; and invoices/user guides available in large print, Braille or on audiocassette.  If you have additional questions, contact the accessibility division within the phone companies and consult HLAA’s website, www.hearingloss.org for additional information about cell phone compatibility.  Finally, technology is constantly changing.  Cell phone companies and manufacturers want to serve their customers and increase their share of the market.  If they do not have something that works for you yet, let them know.  (from Hearing Loss, by HLAA/SHHH, 26(5), Sept/Oct, 2005)

 

Finally, a quote worth remembering.   Mitch Shapiro has hearing and vision loss due to Usher syndrome.  He is also the CEO of the Foundation for Sight and Sound and credits his inspiration and success to this phrase, “Your greatest weakness is your greatest strength.”

 

What’s Happening in Iowa

On Saturday, December 17, 2006 the Iowa Department for the Blind (IDB) hosted training for sign language interpreters interested in the field of Deaf-Blind Interpreting. Twenty-one registered for the training. Director Allen Harris gave the introductory address.  Betty Hansen, deaf-blind specialist, was a primary presenter. The workshop addressed interpreting modifications needed depending on the various vision and hearing conditions.  Assistive technology used by deaf-blind individuals was also demonstrated.  Participants heard from deaf-blind individuals about their experiences working with sign language interpreters and were later able to converse with them. Safe guide techniques were demonstrated and practiced.  Registry of Interpreters for the Deaf (RID) CEUs were offered.  The event was sponsored by Deaf Services Commission of Iowa and IDB.  (Thanks to Betty Hansen for this information.)

 

Spotlight on Carolyn Osborne of Newton.  I recently had the opportunity to meet Carolyn, who prefers to be called Carrie.  Several months ago, she relocated to Newton from Mason City and is enjoying her new surroundings.  Carrie is hard of hearing and has a significant vision loss as a result of Congenital Rubella Syndrome (CRS).  Her mother contracted the virus when she was pregnant with Carrie.  No one knew that the virus would affect the baby.  Carrie is now 42 years old and she and her mother have a very close relationship.  Carrie is very social, enjoys talking with people and has many interests.  She is a voracious reader and spends time at the local library.  She is inquisitive has a good sense of humor.  I was able to identify some other folks who have CRS who can be a penpal with Carrie.  There is a computer listserv that would be perfect for Carrie but she does not yet have a computer.  Until then, penpals will help fill the void.  Carrie is excited because she has never met anyone who also has CRS.  She will be amazed at how many things they will have in common.  Welcome to Newton, Carrie!

Iowa School for the Deaf Celebrates 150 Years!  The Iowa General Assembly established the state-supported institution in 1855.  It was first established in Iowa City but quickly found its permanent home in Council Bluffs after city residents allocated a large tract of land on the south side of town for the school.  Some highlights include mandatory enrollment for deaf students, the largest graduating class of 63 students in 1984 (due to the 1960s Rubella epidemic), quarantines, and opening ISD to Nebraskans after the closure of neighboring NSD.  Many festivities were held on the campus throughout the year to honor and remember the accomplishments that have been made during the last 150 years.  For more information about the history, go to the ISD website at http://www.iadeaf.k12.ia.us and click on “The Iowa Hawkeye.  (from The Iowa Hawkeye, 124(1), 2005)

 

The Deaf Services Commission of Iowa has a very user-friendly website with a variety of resources for deaf, hard of hearing, and deaf-blind people.  Some of the items listed include sign language classes across the state, a public list of interpreters (to find someone in your community), Iowa audiologists (if you need your hearing tested or hearing aid repaired), churches that have interpreted services or deaf ministries, and free or low-cost health care.  For more information go to http://www.state.ia.us/government/dhr/ds/index.html and click on “resources” or if you don’t have access to the Internet, call their office toll free at 888-221-3724 voice or TTY and ask for the resource to be mailed to your home. 

 

What’s Happening in Kansas

 

The KS Deaf-Blind Consortium has been very active this year.  A wide range of agencies and organizations participate on the Consortium serving children and adults.  They have addressed many issues through “collaboration.”  Some of the activities included planning/coordinating workshops and training on a variety of topics, and development of cooperative agreements between interested agencies who serve the same population.  Committee work by the Consortium has addressed these topics: learning about emergency notification and preparation; improving vision screening for birth-3 year olds; expanding the technology available through the KS Telecommunication Access Program (TAP); and educating Kansans about SSPs and creating a pilot SSP program in the state.  The group meets bi-monthly, rotating meeting locations between Topeka, Wichita and Kansas City. The group is facilitated under the capable leadership of Jon Harding with NTAC (National Technical Assistance Consortium).  If you have questions about this group, contact Jon or myself at 913-677-4562 voice/TTY.  

 

SSP Pilot Project in Johnson County.  A committee of the KS DB Consortium is being spearheaded by the Commission for the Deaf and Hard of Hearing (KCDHH).  The eventual goal is to establish statewide support service provider (SSP) services for folks with vision and hearing loss.  Initially, the committee is seeking a coordinator and consumers in Johnson County to be a part of an exciting pilot project.  During that time, trained SSPs will serve as mentors to interpreter students and other interested people to provide the SSP support.  The committee hopes to get the pilot up and running this year. 

Do you wish to receive this newsletter on audiotape rather than in text or Braille?  At the request of several consumers, we have identified a vendor in the state of Kansas who will convert the format of this newsletter to audiotape (used with Kansas Talking Books) at no cost.  Please call our office at 913-677-4562 voice or TTY or email HKNC7BJ@aol.com and let us know. 

 

The Kansas Assistive Technology Cooperative (KATCO) is

a nonprofit organization that serves people with disabilities.  The purpose of KATCO is to provide flexible loans to individuals in order to purchase assistive technology.  Many families on fixed incomes or who have credit problems related to disabilities may qualify for low interest loans.  The types of equipment that may be needed are as varied as the individuals who apply.  Some examples include wheelchairs, hearing aids, electronic Braille devices, computer technology and speech output devices.  KATCO offers assistance with a combination of education, savings and low interest borrowing.  For more information, see them at 625 Merchant, Suite 205 Emporia, Kansas 66801 or call toll free 866-465-2826 voice/TTY or check their website at http://www.katco.net.

                          

Spotlight on Russell Salmons of Wichita.  Years of hard work and patience have finally paid off for this 59-year old gentleman.  Just five years ago, he was living in the Appalachian Mountains of Kentucky, recently widowed, struggling with a severe hearing loss and almost total blindness.  He had performed odd jobs in his community including lawnmower repair and fence building but never held a regular job.  Russell relocated to Kansas thanks to help from his nephew in St. John.  It was here that good things started happening for Russ.  He applied for vocational rehabilitation services and attended the Kansas Rehabilitation Center for the Blind in Topeka in the summer of 2003.  It was determined that training at the Helen Keller National Center could increase his skills and employability.  He entered HKNC in September of that year and after months of training, transitioned to his own apartment in Wichita in July, 2004.  Russ chose Wichita because of the access to public transportation and employment opportunities.  It was a difficult decision because he did not know anyone there.  Russ lives in a high-rise apartment complex for adults.  Since his arrival, he has made friends with many of the residents, sharing a good story over a cup of coffee, offering to buy lunch in exchange for a ride to the grocery store.  He also likes to walk for exercise to maintain his health.  During all that time, Russ had also been searching for a job.  While at HKNC, he confirmed that he enjoys working with his hands.  He trained in New York as a dishwasher and in the laundry department of a large hospital.  Finally, in December, 2005, Russell began work at Envision on the third shift, folding plastic bags and placing them in boxes as part of an assembly line.  He says he’s never been a great sleeper, and doesn’t mind going to work at 11:30 pm.  He is proud to be working, contributing back to his community, and earning a good wage.  He feels it is his way of paying back all of the people who have helped him in the last five years.  His advice to others is to take your situation one day at a time!  Congratulations Russ!  We are very proud of you!   

 

Kansas Selected in Cochlear Implant Research Project   A three-year research grant was awarded in the fall, 2005 to Teaching Research Institute at Western Oregon University. The grant is funded through the U.S. Department of Education and has several objectives: 1) compile demographic data on deaf-blind children who receive cochlear implants; 2) identify assessment tools to measure change in all areas; 3) look at factors that contribute to success implantation which may include age of implantation, severity of vision loss, presence of other disabilities, and presence/quality of training and support after the surgery.  Collaborative partners are the University of Kansas, Midwest Ear Institute/St. Luke’s Hospital and ten state deaf-blind projects including Kansas.  For more information there are a couple of contacts:  KU’s Susan Bashinski, 785-864-2459 voice, 785-864-3434 TTY or sbashins@ku.edu or Jeff Cook at the KS Deaf-Blind Project at 785-296-0917 TTY or JCook@ksde.org.

 

The 8th Annual Deaf-Blind Festivity has been scheduled at Maple Woods Community College in Kansas City, MO.  The date is set for Saturday, April 1, 2006, from 10 am - 2:00 pm. No Fooling!  As always, the ITP students put out a terrific spread for lunch, plus Bingo and prizes. This is a great opportunity to socialize with others who are deaf with vision loss and eager interpreter students.  RSVP required. (No cost).  RSVP to my office.  If you need a ride, call or email me, Beth Jordan at 913-677-4562 voice/TTY or HKNC7BJ@aol.com as soon as possible to locate transportation. 

 

What’s Happening in Missouri

 

Missouri Deaf-Blind Association (MDBA) has been active in 2005 educating interpreter students about deaf-blind interpreting; working with Paraquad (an independent living center) to develop an SSP service; socializing with fellow members and volunteer SSPs; and co-presenting at the statewide Interpreter Conference in Columbia.  Do you have Usher syndrome or other cause of deaf-blindness?  Do you feel lonesome?  Do you want to talk with others like you?  Contact MDBA’s president and founder, Carolyn Alflen at 314-423-6141 TTY, 6114 FAX or email csuejw@cs.com.  Carolyn looks forward to seeing everyone at AADB in Baltimore in June, 2006. 

 

Congratulations! to Carolyn Sue Alflen who received the Vincent Spicuzza Award for leadership from the St. Louis Metro Round Table Representatives for the Deaf, Inc.  The award was presented to Carolyn in November, 2005 for her work to improve services for people who are deaf-blind in the greater St. Louis area. 

 

SSP Services in St. Louis Update:  Well, our first efforts did not achieve the results we had expected.  A workshop was scheduled for May, 2005 and rescheduled for September, 2005 for interpreters to learn more about deaf-blind interpreting.  Unfortunately, interpreters do not “see” deaf-blind people in St. Louis and do not believe they will need these skills. The workshops were canceled due to low registration.  We know there are deaf-blind people in St. Louis, but the interpreters do not.  Maybe deaf-blind people are hidden in St. Louis because they do not have SSP services or maybe they rely on friends and family members to get around town.  Paraquad, MDBA and the MO Deafblind Technical Assistance Project will have to try a different approach to develop an SSP service in St. Louis.  Stay tuned. 

 

Spotlight on Kevin Papin of St. Louis.  Kevin is at a very happy time in his life, but it hasn’t always been that way.  A few years ago, totally blind, his hearing had declined to the point that he could not understand speech.  He was living in a very silent world.  Kevin is a licensed blind vendor under the Randolph-Sheppard Act through the Missouri Business Enterprise Program (BEP).  He has worked in this capacity for 23 years.  Currently, he manages a vending station at the National Geospacial-Intelligence Agency on Second & Arsenal in St. Louis.  He manages 18 different vending machines in various buildings on this secured federal site.  He is responsible for cleaning machines, issuing refunds, and problem solving when machines break down or customers have concerns.  When I met Kevin in 2000, he had lost confidence in himself and was concerned about his ability to continue working.  I suggested that he be evaluated to see if a cochlear implant would give him back his independence.  In July, 2001, Kevin received a cochlear implant and the rest is history.  Because the cause of his deaf-blindness is Usher syndrome 2, he has memory of sounds and has made great strides during his auditory rehabilitation.  He had such great results, Kevin became the first deaf-blind person in St. Louis to receive a second cochlear implant (in the other ear) in August, 2004.  He has many methods of communication depending on who he is talking with.  These include speech, reading/writing Braille, writing, and fingerspelling (with the 25 Deaf employees where he works).  Kevin states that the keys to his success include getting to know your customers and constantly striving to make improvements (whether at work or home).  Kevin and his wife Carole, who is also blind, are building their new dream home just a few blocks from their current house.  Kevin enjoys woodworking, selling his wood crafts, and is active in his church. 

 

The 8th Annual Deaf-Blind Festivity has been scheduled at Maple Woods Community College in Kansas City, MO.  The date is set for Saturday, April 1, 2006, from 10 am - 2:00 pm.  No fooling!  As always, the ITP students put out a terrific spread for lunch, plus Bingo and prizes. This is a great opportunity to socialize with others who are deaf with vision loss and eager interpreter students.  RSVP is required. (No cost).  RSVP to my office.  If you need a ride, call or email me, Beth Jordan at 913-677-4562 voice/TTY or HKNC7BJ@aol.com as soon as possible to arrange transportation.

 

ASL Accepted as Foreign Language   In August, 2005, Missouri became the 41st state to recognize American Sign Language (ASL) as a foreign language in all state public educational institutions.  This includes any public (high) school or institution of higher learning (college/university) in Missouri. (from Missouri Commission for the Deaf and Hard of Hearing Listserv, June 6, 2005)

 

Nagel’s Low Vision Resource Center in Independence, Missouri offers customers the opportunity to “try it before you buy it.”  Go to their store to see a variety of low vision products including magnifiers, writing guides, large print address books and cookbooks, CCTVs, talking clocks, cooking aids and much more. In addition, they offer personalized support and ideas.  They can also help people gain access to the world of print and computers.  They’ve been a resource in our community for years.  Contact Nagel’s by calling 816-833-2444 voice or on the web at http://www.nagelsvisualaids.com.  See their store at 2400 Lee’s Summit Road, Suite 130, Independence.

 

What’s Happening in Nebraska

 

Nebraska Selected in Cochlear Implant Research Project   A three-year research grant was awarded in the fall, 2005 to Teaching Research Institute at Western Oregon University.  The grant is funded through the U.S. Department of Education and has several objectives: 1) compile demographic data on deaf-blind children who receive cochlear implants; 2) identify assessment tools to measure change in all areas; 3) look at factors that contribute to success implantation which may include age of implantation, severity of vision loss, presence of other disabilities, and presence/quality of training and support after the surgery.  Nebraska was chosen as one of eight state deaf-blind projects to participate in the research.  For more information, contact Teresa Coonts, NE Deaf-Blind Project coordinator at 402-595-1810 voice/TTY or tcoonts@esu3.org.

 

Wonderful Article about a Deaf-Blind Child’s Experience with Cochlear Implantation   Shannon Butalla recently contributed an article about her 3-yr old son Sam and their family’s decision for him to receive a cochlear implant.  The article reveals the emotions that go into making the decision, keen observations made by Shannon after his implant, and her hopes for his future.  The publication is the Winter, 2006 issue of Deaf-Blind Perspectives.  It can be accessed on-line through this link: http://www.tr.wou.edu/tr/dbp/index.htm.    Click on ‘current issue’ or ‘archives’ to locate Shannon’s article. To request a copy by phone, call DB-Link at 800-438-9376 voice or 800-854-7013 TTY.  Shannon is the family consultant for the Nebraska Deaf-Blind Education Project.  (from Deaf-Blind Perspectives, 13(2), Winter, 2006)

 

Congratulation to NCDHH   The Nebraska Commission for the Deaf and Hard of Hearing have been providing service to Nebraskans with hearing loss for 25 years!  They have offices in Omaha, Lincoln and North Platte and field representatives who cover every part of the state.  Contact them at 877-248-7836 voice/TTY or on the web at www.ncdhh.ne.gov. 

 

Hand in Hand Deaf-Blind Peer Support Group   To highlight their activities this past year, in May, 2005, the group joined other Deaf citizens to help the NCDHH celebrate their 25th jubilee year. The educational jamboree held at Mahoney State Park in Ashland brought in local and nationally-known experts from federal agencies, hospitals, and businesses to discuss important issues affecting Nebraska residents who experience hearing loss. Cheryl Poff was a statewide presenter on issues of deaf-blindness. 

In June, several members of the Deaf-Blind community advocated to the Governor's Office to have sign language interpreters available for the Helen Keller Deaf-Blind Awareness Week proclamation ceremony. As a result of teamwork on this issue, the Governor's Office will provide interpreters for the June, 2006 ceremony.

The Hand in Hand Group meets six times a year.  Interpreters  are available if scheduled in advance.  For more information about events scheduled for 2006, contact Cheryl Poff, NCBVI’s deaf-blind project coordinator at 402-595-2043 TTY, toll free 877-809-2419 voice or email at Cheryl.poff@ncbvi.ne.gov.

Nebraskans for Hearing Aid Coverage (NeHAC) is a grassroots movement comprised of individuals and organizations representing or serving people with hearing loss.  They are considering three areas related to hearing aids to draft legislation for 2006.  These include state tax breaks for purchase, mandatory insurance coverage, and coverage through the Relay Fund.  However, they need to hear from you to  learn of your experiences and determine direction. Contact NeHAC by calling 800-545-6244 voice/TTY.  (from NCDHH Newsletter, 19(3), Fall, 2005)

Spotlight on Randy Swanson of Omaha.  I have known Randy for many years, but the truth is, to really get to know Randy, you have to meet him at work and let him talk with you about the innovative ways he approaches his job.  Randy is a licensed blind vendor under the Randolph-Sheppard Act through Nebraska Business Enterprises.  He manages a full room of vending machines at the U.S. Post Office that include a variety of colas, coffee, tea, cappuccino, energy drinks, snack foods, candy, sandwiches, and frozen items.  He is responsible for ordering supplies, cleaning machines, making change, unloading deliveries, and problem solving when machines break down.  Randy rises at 3 am to be at work by 5:30 am, six days a week.  Amazingly, he’s been doing this job for 26 years!  He likes being his own boss and enjoys making his customers (Post Office employees) happy.  Randy became legally blind when he contracted Rubella at age 2.  It also resulted in a severe hearing loss.  He has many methods of communication depending on who he is talking with.  These include speech, reading, writing, visual or tactual sign language, and fingerspelling.  He uses a variety of clever gadgets and technology to run his business efficiently.  Randy states that the keys to his success include: 1) getting to know your customers, 2) having someone in management who can help as a communication tool (in order to respond to requests), 3) never give up, and 4) always keep that thumb up!  These values would hold true in any job, any where.  Randy and his wife Patty, who is also deaf-blind, live happily in their own condominium near downtown and are active in the Hand-in-Hand Peer Support Group.   

Nebraska Foundation for Visually Impaired Children (NFVIC) This Omaha-based, non-profit corporation was established in 1960.  Their mission is to enhance the lifestyle and education of children (birth-age 21) who are blind or visually impaired through advocacy and funding of technology/supports.  They provide social and cultural events for young people and their families, training opportunities for educators working in the field, as well as resources.  You can contact NFVIC by calling 402-571-5220 voice or checking out their friendly website at http://www.nebraskafoundation.org.  (Thanks to Teresa Coonts for this resource)

 

On Sept. 29, 2005, Beth Jordan, Teresa Coonts and Cheryl Poff had an opportunity to address issues of Deaf-Blindness at the Statewide Audiology and Speech Language Conference held in Kearney.  The presentation was titled, “When Hearing and Vision Loss Occur Together: Implications for Communication.”  It was very well attended with more than 50 participants including audiologists, audiology students, speech therapists and other related service professionals.

 

For More Information

If you live in Region 7, you may also contact us at:

       Beth Jordan, Regional Representative

       Helen Keller National Center

       4330 Shawnee Mission Pkwy, Suite 108

       Shawnee Mission, KS 66205-2522

       913-677-4562 voice or TTY

       913-677-1544 fax

       HKNC7BJ@aol.com

       www.HKNC.org