Reg 7 Winter, 2005 Number 9

AADB–The American Association of the Deaf-Blind Although there wasn’t a conference this year, it’s still been a very busy one for AADB. In the fall, 2004 they hired Elizabeth Spiers to be the director of programs/services. I have known Elizabeth for many years as she used to work for an agency that was an HKNC Affiliate. Deaf-Blind herself, this bright, energetic and creative young lady will make a terrific addition to the AADB staff. Jamie (McNamara) Pope, the executive director, also announced plans for the next AADB National Conference. It will be held June 17-23, 2006 in Baltimore, Maryland on the campus of Towson University. You have plenty of time to make your plans and save for the registration fee. Additional details will be announced in their publication, The Deaf-Blind American or on their web site at www.aadb.org The phone number for the home office is 301-495-4402 TTY or 4403 voice.

AADB is also part of a new National SSP Pilot Project. The Deaf-Blind Service Center (DBSC) in Seattle, working with AADB and HKNC as supporting partners, has identified two pilot sites in Washington, DC and Texas, and an expansion of DBSC to include eastern Washington state. The plan is to present the proposal to a key senator on the appropriations committee in Congress with hopes of funding this Project next year. Look for updates in the DBA. It will be exciting to watch these developments. After this initial pilot period, Congress could potentially fund SSP services in other regions of the country.

HKNC Update HKNC has also been working to beef up our web site www.hknc.org Several of the resources developed by this regional office are located there including the hearing aid funding sources, camps, and the most current regional newsletter. If you have ever considered going to HKNC for evaluation and training, you can also find helpful answers to your questions there. Give me a call at 913-677-4562 voice/TTY or drop me an email at HKNC7BJ@aol.com if I can help.

In March, HKNC will host an International Symposium on Rubella titled “The Many Faces of Rubella.” The goal is to increase awareness of the international scientific/medical community regarding the current status of congenital rubella syndrome (CRS), late onset manifestations, and its impact on the lives of individuals and their families. Although the rubella epidemic of the 1960s was the driving force for many of the laws and services for deaf-blind children and adults today, shockingly, an estimated 100,000 children are reportedly born with CRS every year worldwide. For more information about CRS or the Symposium, contact HKNC’s Nancy O’Donnell at 516-944-8900 ext 326 or hkncnod@aol.com

One other note that affects me more than you, is a change in our administration. My previous supervisor, Dr. John Mascia, accepted the position of Executive Director of the Alabama Institute for Deaf and Blind's E. H. Gentry Technical Facility in Talledega, Alabama in January, 2005. My new supervisor is now my fellow regional representative, Susan Lascek, who is based in Atlanta, Georgia. She did not fill John’s position, director of field services, but instead began a new position as supervisor of regional representatives. Although we miss John, we look forward to positive things as a result of this change.

NFADB–National Family Association for Deaf-Blind held another outstanding Parent Conference in St. Louis in July, 2004. Jennifer White from Oregon entertained us with the topic of “Socialization and Recreation Strategies for Families with Children Who are Deaf-Blind.” A resource manual will be available this spring with recreation recipes and ideas. If you would like a copy, let me know by returning the last page of this newsletter.

NFADB will begin a new venture by establishing affiliations with interested state family groups. The first year will be the pilot year with only one or two applications being chosen. The purpose is to strengthen the nationwide network of supports for families with children who are deaf-blind. For more information on affiliation, contact Pearl Veesart, NFADB vice president at 805-528-5673 or PearlV@thegrid.net If you have other questions, contact our regional director, Jacque Clifton at 316-776-9662 or JClif222@aol.com The NFADB web site is www.nfadb.org

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 web sites.

An Affordable Hearing Aid? It’s About Time! With over 28 million Americans who have a hearing loss, the Lions Affordable Hearing Aid Project (AHAP) developed a low cost, high quality hearing aid which at a little over $100 has proven to perform as well as aids that sell for $2,000. This aid is only available through Lions Clubs in partnership with local audiologists. Whereas these partnerships exist worldwide, so does the AHAP program. Read more about this program at their new, cleverly named web site: www.lionsear.org or call them at 630-571-5466, ext 615 voice.

Self-Employment for People with Disabilities Training Curriculum was developed by the Research and Training Center on Disability in Rural Communities and funded by NIDRR. This self-study guide was developed for rehabilitation counselors to use with their clients. Self-Employment holds many advantages for all Americans. It allows for flexible work schedules or working from home and provides a product/service to meet a previously unmet public need. Check out the curriculum on this web site: http://selfemploymenttraining.ruralinstitute.umt.edu or contact the author, Dr. Nancy Arnold at the University of Montana Rural Institute at 406-243-2469 voice or 4200 TTY. (from Monday Morning in Washington e-newsletter, 4(19), May 10, 2004)

Job Hunting Resources for People with Vision Impairments is a new book from Blindskills, the producer of Dialogue Magazine. The author, Karen Lynn Thomas, covers topics such as resume writing, interviewing, and places emphasis on the importance of communication and social skills. It’s available for $10 in large print, braille, cassette, or computer diskette. It is ideal for deaf-blind readers who are seeking employment as there is an excellent bibliography and extensive on-line resources. To order, contact Blindskills, Inc. at 800-860-4224 voice or e-mail blindskl@teleport.com (from the Missouri Chronicle, vol XLIV(2), June, 2004)

The Work Site is a helpful web site from the Social Security Administration (SSA) that provides employment support for people with disabilities. Included is information on the Ticket to Work Program, a referral source for employers to recruit qualified employees, and frequently asked questions about work incentives and other SSA programs. Find out more at www.socialsecurity.gov/work

For People Over the Age of 55

National Center on Age-Related Vision Loss The American Foundation for the Blind is in the process of establishing this new National Center housed in Dallas, Texas. Not only will it be a source of information and referral to local and national resources for older adults, but it will also house a model living environment to demonstrate how older Americans who are losing their vision can maintain their independence. You won’t need to travel to Dallas for the information, as a virtual tour will also be available on the Internet. Keep an eye on AFB’s web site at www.afb.org for the latest developments. (from AFB eNews, June, 2004)

Senior Citizen Bureau provides information and guidance to the senior population and service provider agencies. Services include a 24-hour toll free Elder Info Hotline, e-newsletter or newsletter by mail, helpful articles, workshops and training opportunities. Learn more by calling 866-847-4415 voice toll free or viewing their web site at www.seniorcitizensbureau.com

Retired and considering a move? Although there are several facilities across the country that provide support for deaf-blind adults who want to live in a “community” with others who are also deaf-blind, there’s a beautiful new facility in Oregon that is worth noting. Chestnut Lane is an assisted living facility that specializes in service to deaf, hard of hearing and deaf-blind residents with staff who are fluent in American Sign Language. This high-rise complex opened in 2003 and is located minutes from Portland. Many services are provided including personal care, housekeeping, assistance with medications, dining room, hair salon, computer room, wellness program, social and recreational events and transportation to services and supports in the nearby community. Although there are many senior citizens there, deaf-blind residents as young as 18 are welcome. For more information, call 877-674-0364 toll free voice, 503-618-9264 TTY or learn more on their web site at www.chestnutlane.org

Legislative Updates

Tax Credit for Purchase of Hearing Aids If you remember, in last year’s newsletter the bill, H.R.3103 was pending approval in Congress. Well, the good news is...it hasn’t died, and the bad news is...it’s still pending! It now has over 50 sponsors and 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 eventual outcome of this legislation or check the Self Help for Hard of Hearing (SHHH) web site for the latest information at www.shhh.org.

The Assistive Technology Act of 2004 was signed into law in October. This reauthorization provides funds, improves access and fosters better program administration. It ensures that technology will be available where people need it, in schools, at work, and in the community. It also requires states to focus on two populations: students with disabilities receiving transition services and adults with disabilities maintaining or transitioning to community living. For more information, contact the Assistive Technology Project in your state.

Proposed legislation would improve the process for hard of hearing/deaf consumers on Medicare. The “Hearing Health Accessibility Act” H.R.2821 and S.1647 would give Medicare beneficiaries the option of going directly to a qualified audiologist for hearing evaluation instead of requiring a referral from the primary care physician. Other federal health care programs already offer this benefit. Not only would it give the consumer greater options, it would be less costly for Medicare. Although the House version of this bill has 54 cosponsors, the future of this Act is uncertain. To track the progress of these bills and advocate to your legislators, check the SHHH web site at www.shhh.org or check “Thomas,” legislative information on the Internet at http://thomas.loc.gov

Ever wondered about that tax exemption for blindness? If your vision loss has worsened in the last year you might not be aware of this little tax trivia. When filing your federal income tax, if you are considered legally blind, check off the box (for yourself or your spouse), and attach a letter from your doctor documenting the fact. If this statement certifies that the condition is unlikely to improve, a new certification is not required in subsequent years. For 2004, the additional standard deduction is $950 (for married taxpayers and surviving spouses) and $1,200 for single taxpayers. I’m not a tax expert, and in fact, I don’t even handle the tax paperwork for our family, but colleagues tell me this is how it’s done. For more information, contact your tax preparer or check the IRS web link for standard deduction tables.

Publications

A Guidebook for Interpreters: Making Accommodations for Individuals with Dual-Sensory Impairments by Susanne Morgan was recently published by the Nebraska Deaf-Blind Project. It is a visual, easy to follow manual that spells out the “dos” and “don’ts” of the various modes of communication with someone who is deaf and has a vision loss. The manual is available in a PDF file format at the DB Link web site at www.dblink.org/pdf/interpreter.pdf You can also contact Teresa Coonts, Project Coordinator at 402-595-1810 voice/TTY or via email at tcoonts@esu3.org

While at the National Association of the Deaf (NAD) Conference this summer, I had a chance to talk with Robert Blumenau who is a board member of the Washington State Deaf-Blind Citizens (WSDBC). He told me about a publication that they had recently published called the Deaf-Blind Interpreting Workbook which was written as curriculum for a class of deaf-blind interpreting students. I ordered it and found the material to be excellent. I am using it for several upcoming deaf-blind interpreting workshops. The workbook is $20.00 and shipping is an additional $4.00. For more information about the group, manual, or an order form, see their web site at www.wsdbc.org or contact Jackie Engler-Morris at keaki23@yahoo.com or 425-793-0035 TTY.

Link by Link: A Guide to the Development and Implementation of Services for Persons who are Deafblind and Live in Rural Areas is a publication from the Center for Sight and Hearing (CSH) in Rockford, Illinois. This document which is written by Lynn Blashaski and Steve Sligar is an output of their five-year affiliateship with HKNC. To receive a copy, contact CSH at 815-332-6800 voice or 6820 TTY.

The Federal Deposit Insurance Corporation (FDIC) has developed a free training program to teach adults how to enhance money and banking skills. The program, called Smart Money, has ten instructor-led modules to improve access to financial education for persons with disabilities and their families. Learn all about it at their web site: www.fdic.gov/consumers/consumer/moneysmart/index.html

Contact one of the alliance members in your community or request a copy for yourself. (from Monday Morning in Washington e-newsletter, 4(19), May 10, 2004)

On-Line Resources

Deaf-Blind Citizens for Political Action, or DB Action for short, is a new grassroots email list for people who wish to: learn how to advocate for their needs, use the legislative process, seek funding sources, and find political solutions that will improve life for all Deaf-Blind Americans. Both consumers and service providers are welcome. To join, send a blank message to: DBACTION-SUBSCRIBE-REQUEST@home.ease.lsoft.com

After your free subscription is confirmed, send list messages to: DBACTION@home.ease.lsoft.com

Not a Listserv, but an email newsletter, Vision Connection At A Glance, a publication of the Lighthouse International, is a wonderful resource for the latest vision research, information about different types of eye diseases, and tips on making life easier when living with a vision loss. To subscribe, send a blank email message to SubscribeAtaGlance@email.visionconnection.org

The SHHH E-News List is another great e-newsletter with useful updates on new legislation, research related to hearing loss, and discounts on hearing-related assistive technology. To join, go to the Self Help for Hard of Hearing People (SHHH) web site at www.shhh.org and click on “e-newsletter” along the top of the page. Follow the instructions to subscribe for this free bi-monthly publication.

One more helpful e-newsletter is the AFB eNews from the American Foundation for the Blind. Information about what’s happening at AFB, medical research, and training opportunities are a few of the items that might interest you. To subscribe, go to the web site at www.afb.org and click on “newsletters.” You can also adjust the print size, font and color to meet your needs.

Do You Use Notetakers in School? Notetaking is the most widely used support service by students who are deaf and hard of hearing. Often, the notetaker is a fellow student in the same class, yet the student needs to be screened and trained to insure quality notetaking. The Northeast Technical Assistance Center (NETAC) has developed an on-line training program with three modules to address: 1) disability awareness, 2) notetaking mechanics, and 3) roles and responsibilities. A test and certificate of completion are also part of the program. Check out the web site to complete this 90-minute free on-line training program at http://netac.rit.edu or call 585-475-6433 voice/TTY.

C-Print On-Line Training Now Available C-Print displays the printed text of spoken English, real-time for some people who are hard-of-hearing, deaf, or deaf with a vision loss. This system is used by high school and college students, or by people attending meetings or workshops. The beauty is that training to become a C-Print captionist is now available on-line from NTID, the National Technical Institute for the Deaf. There is a fee for the software, participant skill requirements, and computer system specifications. For more information on this career opportunity, contact the NTID C-Print Development and Training Office at 585-475-7557 voice/TTY or www.cprint.rit.edu

Michigan State University created an award-winning, free ASL Browser with accurate descriptions of many signs as well as animated pictures that demonstrate the proper way to form them. The only issue with the web site is the small video window. I have contacted MSU about this concern. The site also offers a CD-ROM called the Personal Communicator for purchase. For persons who want a greater vocabulary or need more than just an occasional reminder sign, the CD-ROM is for you. Check out both by going to MSU’s web site at www.commtechlab.msu.edu and clicking on “ASL Browser/Personal Communicator.” (from the Kansas City Star, February 19, 2004)

Gallery of Personal Visual Perceptions We know that two people with the same eye condition will view things differently. A unique web site allows you to “see through the eyes” of people with eye conditions that affect the retina. Check it out at www.mdsupport.org/thrueyes.html for Macular Degeneration and related conditions or www.mdsupport.org/thrueyesRP.html for Retinitis Pigmentosa. You can add your view on the world as well.

The National Braille Press has a helpful new web site. Once there, people young and old can browse their bookstore to find unique items and gifts, join the children’s braille book club, receive an estimate for braille production services, or take a virtual tour of their facility in Boston. Check it out at www.nbp.org or www.braille.com or call 888-965-8965 voice and request a catalog the old-fashioned way.

Research: Medical, Social and Community

Five-Year Project to Study Persons Aging with Hearing and Vision Loss (PAHVL) “Update” Demographic data from the first survey has been tabulated. Of the 400 people nationally who agreed to be part of this study, over 50 are from the Great Plains states! Here are a few statistics of significance. Over 85% live in a private residence with 43% living alone and 45.5% living with one other person. The majority of participants reported at least one other health problem including arthritis (52%), high blood pressure (41%), and heart disease (22%). Fifty-Nine percent of respondents felt that their vision loss caused the greatest decrease in independence, while a number of people indicated that it was a result of their combined vision and hearing loss. Focus Groups were facilitated at several national conferences last year for PAHVL participants. Common concerns or issues were noted as a result. The second survey will address the impact of vision and hearing loss on employment and work history. More details can be found in the PAHVL newsletter or on their web site: www.blind.msstate.edu/pahvl.pahvl.html (from PAHVL Newsletter, June, 2004)

ROP Research Premature infants who are at the greatest risk for developing vision loss due to Retinopathy of Prematurity (ROP) will retain better vision when therapy is begun in the early stage of the disease. Previously, physicians felt it was better to wait to determine if the risk factors for retinal detachment reached a certain level. As part of the research by the National Institutes of Health published in the Archives of Ophthalmology (Dec, 03), the study created an improved risk assessment model to more accurately identify infants who are at the highest risk for developing ROP. Each year ROP affects an estimated 14,000-16,000 premature, low birthweight infants in the United States and thousands more worldwide. For more information go to www.nih.gov/news/pr/dec2003 and click on “Early Treatment of Blinding Eye Disease.”

Thoughts on Cochlear Implants The May, 2004 issue of Archives of Otolaryngology addressed the pediatric use of cochlear implants. One study, by researcher Ann Greers of the University of Texas Southwestern Medical School, found that 43% of children who received the implant by age 2 had normal oral language abilities by age 8 or 9, compared to only 16% of youngsters who received implants by age 4. Greers believes the results are not due to length of implant use but rather having access to the device during the critical period of language development when children hear and imitate sounds. (from Associated Press writer, Lindsey Tanner, 5/18/04) Additionally, as people who have lived full lives with good hearing grow older, often they acquire age-related hearing loss. For many, hearing declines at a rapid rate, and combined with vision loss, the impact on one’s independence, relationships and emotional well-being can be devastating. A number of these adults who can no longer substantially benefit from hearing aids, are turning to cochlear implants. Having memory of sound and the desire to communicate aurally with friends and family again are good indicators. The process to determine if one is a candidate for a cochlear implant is much more scientific. If you are interested, speak with your physician or audiologist.

Age-Related Macular Degeneration (AMD) Dos and Don’ts AMD is the #1 cause of blindness in the United States affecting one in eight Americans over the age of 60. This eye condition gradually destroys central vision needed to recognize faces, read a book, watch television or drive a car. How can you preserve your central vision? Eat foods or nutritional supplements rich in lutein and antioxidants such as vitamins A, C, E, and beta carotene. Avoid foods high in saturated fats. These fats may contribute to hardening of blood vessels supplying the retina. However, not all fats are bad for vision. The fat found in fish and nuts actually slowed the progression of AMD. The exact amounts of these supplements should be determined by your ophthalmologist. (from AARP, Nov/Dec, 2004; Cooking Light, Sept, 2004; Lighthouse International’s Vision Connection, May, 2004)

AMD Discoveries The second Age-Related Macular Degeneration gene discovery was made last summer (2004) at the University of Iowa. What this finding indicates is that AMD is not caused by a single gene defect but that many variables and multiple genes are involved. Additionally, environmental influences such as smoking, exposure to sun and one’s diet also factor into the equation. In December, 2004, the FDA approved pegaptanib sodium injection (Macugen), a new drug therapy to slow wet-AMD progression. It is being co-developed by Eyetech Pharmaceuticals, Inc. and Pfizer, Inc. However, Macugen is not without other vision-related side effects. See your ophthalmologist with questions about whether it is right for you. (from the Foundation Fighting Blindness Newsletter In Focus, Fall, 2004)

“Living Well with Macular Degeneration” is a new distance education course being taught by the Hadley School for the Blind. It’s a FREE course that explains the diagnosis of AMD and helps people to continue their everyday activities with limited vision. It is currently available in large print and will soon be available on audiocassette or online. This is only one of 90 tuition-free courses offered to persons who have vision loss, their family members and service providers. For more information, contact Hadley at 800-526-9909 voice, www.hadley.edu or email studentservices@hadley.edu

Processing Sounds We have known for decades that the two sides of the brain process sounds differently, but now researchers have learned that the left and right ears do also. The right ear responds more to speech and the left is more attuned to music. This is significant if your child has a severe hearing loss in his right ear (affecting learning) or which ear receives a cochlear implant. Until this research, it was thought that auditory processing originated in the brain, not in the ear. (New York Times, by Anahad O’Connor, Sept 14, 2004)

Discovery Leads to Revised Treatment for RP Persons with Retinitis Pigmentosa (RP) have known since 1993 that use of vitamin A palmitate 15,000 IU/day would help slow the retinal degeneration. In September, 2004, new research findings were reported. These results are complicated and only apply to people with “typical RP,” including people with partial hearing loss but not people with profound, congenital hearing loss. There are several findings: 1) for people already taking vitamin A palmitate, DHA (docosahexaenoic acid) supplement did not slow the progression; 2) if just initiating vitamin A palmitate for the first time, combining with DHA supplementation slowed the course of RP for two years; and 3) persons taking vitamin A but not DHA, who ate salmon, tuna, mackerel, herring, or sardines, slowed their annual rate of vision loss by 40-50% compared to people who did not add these fish to their diets. A full report including a letter from Dr. Eliot Berson, the leading researcher, can be found on the Foundation Fighting Blindness web site www.blindness.org/research.asp?id=227&type=3 As with all medical advice, please consult your physician to determine the course of action that is right for you. (from FFB’s Newsletter In Focus, Fall, 2004)

Risk Factors for Glaucoma I recently had a jaw-dropping conversation with one of my relatives who will remain anonymous. She will turn 40 this year and revealed that she had never been to the eye doctor! My first thought was glaucoma and the need for annual eye exams to check for the presence of this progressive eye disease. Thus it seemed a good time to remind my family member and readers about the associated risk factors. Some include: elevated intra ocular pressure, older age, being African American (associated with thinner central corneas), and female gender. Are you at greater risk? Regular screening and early treatment give the best outcome for persons with glaucoma. (from Lighthouse International’s Aging and Vision, 16(2), Fall, 2004)

Assistive Technology

Need a different TeleBraille repair source? They don’t make the TeleBraille any longer, so when your device breaks, you need a source for repair. Bapin, the supervisor of HKNC’s Technology Center, met a fellow who can do it. Amazingly, he’s right here in Kansas City! His name is Andrew Bond with Teltex, Inc., 888-515-8120 voice/TTY, Andrew@teltexinc.com with more on the web site at www.teltexinc.com His fee is $175 and up depending on the parts needed. That’s cheap compared to Visual Aids Electronics flat rate of $625. It might be worth a try!

Attention Braille Enthusiasts! There’s a new device for brailling called the Jot a Dot. Until now, the low tech choices have been either a slate and stylus or Perkins Brailler. Jot a Dot allows portability with functionality at a reasonable cost. It weighs less than a pound and fits into a pocket. Let’s see you do that with the Perkins Brailler! The cost of the new device is approximately $345 and although the product is manufactured in Australia by Quantum Technology, the US distributor is Optelec. For more information contact Jim Sullivan at 330-528-0002 voice or jims@optelec.com. A great source of information is the web site www.jotadot.com.au

Relay Services...Changing to Meet Your Needs If you haven’t made or received a Relay call lately, find out more. There is a Relay option that will meet your vision and hearing needs. The traditional Relay service allows you to call a voice user, and read their response in text (via a Relay operator). You can also make a wireless Relay call from your text pager (e.g. Sidekick) device. Another alternative allows you to make a video Relay call using a computer with a highspeed Internet connection and a web camera (or D-link). You can sign to a video interpreter who will relay the message to your caller. Still one more option is to have a video Relay conversation through AOL’s (America Online) Instant Message program 5.5(AIM). Several of the providers now have this service. Local or long distance, the price for any of these Relay options is still the same...FREE! Plus, the number of providers for these services is extensive. Here are just a few: Hamilton Relay at 800-618-4781 TTY/voice or www.hiprelay.com; Hands-On Video Relay Service at 800-900-9479 TTY, 9478 voice or www.hovrs.com MCI at 866-889-8647 TTY or 877-477-3529 voice or www.IP-RELAY.com; Sorenson VRS at 866-327-8877 TTY/voice or www.sorensonvrs.com and Sprint at 800-676-3777 TTY/voice or www.sprintrelay.com Technology is revolutionizing the Relay industry! Go to these web sites for all the details.

A friend just gave me a copy of a catalog with the full gamut of assistive listening devices and alerting devices for people who have hearing loss. The Missouri Telecommunication Access Program (TAP) used this company often. It’s called Beyond Hearing Aids, Inc. and can be contacted at 800-838-1649 voice/TTY or www.BeyondHearingAids.com See something you like? Contact the TAP program in your state to see if you can receive the equipment at no cost.

Show Me the Money! So you’ve read about some great new technology but aren’t sure how to pay for it? Well, here’s one solution. The Association of Blind Citizens (ABC) has established the Assistive Technology Fund which will cover 50% of the retail price of adaptive devices or software up to a maximum retail price of $6,000. Applicants must be legally blind, US residents and can submit one request per calendar year. Simply provide a description of 500 words or less stating how the device will help you achieve employment or increase independence. Submit with your name, address and phone number to ATF@blindcitizens.org. Learn more by phoning the ABC home office in Massachusetts at 781-961-1023 voice or checking out their web site at www.blindcitizens.org With ABC paying for half, how to finance the remainder? Consider local resources including civic organizations (Lions, Sertoma), support agencies (United Cerebral Palsy), your place of worship, or businesses. Get creative! (Thanks to Jeff Cook in Topeka, Kansas for this helpful resource!)

Finally, a quote worth remembering. When someone asked Ruth Silver, "How long did it take you to adjust to deaf-blindness?" She responds, “My answer is always the same. It takes exactly one lifetime." -- Ruth Silver, Director Emeritus and Deaf-Blind Consultant, Center for Deaf-Blind Persons, Milwaukee, Wisconsin.

What’s Happening in Iowa

Attention Centenarian WANNA-BEs! Yes, we all know that Iowans have among the best life expectancy rates of any Americans. I found a terrific web site that offers a quiz to tabulate a score for your lifestyle and gene pool to determine if you too can live to be 100 years old. To take the simple test, go to www.livingto100.com

The Iowa Department of Education’s Systems Change Project for Deafblindness (birth - 21 grant) was funded! In the fall, 2004, the Project received word that they were funded for the next 4 years. However, there have been some changes. The new project director is Karen Blankenship. She can be reached at 515-281-7472 voice.

Spotlight on Larry of Decorah. Except for his early years at the Iowa School for the Deaf, Larry has lived in Decorah his entire life. At the age of 62, he is quite comfortable with his routine. He has worked at Spectrum Industries in town since 1979. That’s more than a quarter of a century! The amazing thing...he still loves to work! He has done wood working, small parts assembly, sorting, and other tasks that require fine motor skills. He’s a steady worker who is not easily distracted...every employer’s dream! Larry is profoundly deaf and now totally blind. He has glaucoma which has worsened through the years. He communicates by using sign language tactually. Larry lives in his own home, with support from his sister-in-law in the evenings. Now he just needs to learn how to “play.” Larry and his family will begin to consider activities that he enjoys doing for fun!

The Iowa Department for the Blind’s Project ASSIST has been around for eight years now. They have an ASSIST with Windows Newsletter that outlines their expertise, recent activities and several links with helpful resources. They have been providing effective computer training materials through tutorials and instructor-led on-line training courses; several specifically developed for people who are deaf-blind. To find out more, go to: www.blind.state.ia.us/assist/ASSIST_Newsletter.htm

or contact IDB’s Brian Walker at 515-281-1317 voice.

Mentoring Program The IDB was awarded a five-year one-million-dollar transition, mentoring grant by the Department of Education. The program, called Pathfinders, matches blind youth ages 16 - 26 with competent and successful blind adults. Mentors and pathfinders (young adults) attend workshops together to learn about self-advocacy, self-confidence, blindness skills and career exploration. Through mentoring, you can share your wisdom and experiences with a young person who needs your encouragement and support. IDB is accepting applications for mentors and pathfinders. They welcome applicants who have vision AND hearing loss. For more information about the Pathfinders Mentoring Program, contact Keri Nuzum at 800-362-2587 voice or nuzum.keri@blind.state.ia.us

Practical Guide to Universal Home Design, a free publication available from the Iowa Program for Assistive Technology (IPAT). If you are considering a move or home modifications, be sure and consult this guide before you proceed. Universal design strives to make things comfortable and convenient for as many different people in as many stages of life as possible. It adds flexibility, simplicity, individuality and safety. Download a text version of the booklet at www.uiowa.edu/infotech/universalhomedesigntext.htm or call 800-331-3027 voice or 877-686-0032 TTY for a print copy by mail.

“Living Well with a Disability” is a unique training program offered by the Center for Disabilities and Development (CDD) through a grant funded by the Centers for Disease Control and the Iowa Department of Public Health. CDD is partnering with Centers for Independent Living and other agencies across the state to implement the program. “Living Well” is a free, 12-week course which primarily targets individuals with mobility impairments. The classes, which begin in May and September, include such topics as goal setting, beating the blues, physical fitness, nutrition, safety and accessing information. An adolescent version will be piloted in select Iowa schools during winter and spring of 2005. For more information, contact Mike Hoenig with the Center for Disabilities and Development (CDD) at 319-353-6448 voice or check out the October, 2004 issue of the Iowa COMPASS News which is available on-line at www.uiowa.edu/infotech/October-2004.htm. Mike tells me that they are eager to provide accommodations in order to welcome participants who have vision and hearing loss.

What’s Happening in Kansas

Talking Book Service of Kansas recently asked me to serve on their Advisory Council. I have to admit that my knowledge of this free service has expanded tenfold since I took on my new role. Talking Books has sub-regional library consultants who are available to complete the application process for new patrons and help users select reading material and troubleshoot technical problems. There is a reading machine with a special volume control for hard of hearing users. Ask for it! You will be pleased to know that several members of the Advisory Board have vision and hearing loss including the chairperson. If you would like more information about this service, call 800-362-0699 voice or check out: http://skyways.lib.ks.us/KSL/talking/ksl_bph.html

Department on Aging Publication: “Explore Your Options: A Kansas Guide to Information and In-Home Services 2004/05." This great guide offers supports whether you want to remain in your home or if you are contemplating alternate housing and long-term care options. I am amazed at the wealth of resources in this on-line book. To access go to: www.agingkansas.org/kdoa/publications/eyo/eye_index.htm.

For the text or alternate format, call 800-432-3535 voice.

Attention Residents of Sedgewick and Shawnee Counties: There is an interesting service for folks in these two counties that will provide health coverage and pay for medical prescriptions for children and adults who are uninsured. The American Project Access Network can be found in specific communities across the country. Kansas is lucky to have two sites. For more information about Sedgewick County contact 316-688-0600 voice or http://projectaccess.net For Shawnee County, contact 785-235-0996 voice. More information about the national program can be found at www.apanonline.org

KS School for the Deaf Celebrates 150^th Anniversary As the oldest state educational institution in the state, KSD began in 1861 in a small, two-room house in Baldwin City. It began when one of the earliest Kansas settlers, J.R. Kennedy, persuaded a deaf teacher named Philip Emery to educate his three deaf children. Now based in Olathe, the school is home to several deaf students who also have vision loss. Learn more about this school at www.ksdeaf.org (from The KC Star, Sept 8, 2004)

School for the Blind Provides Parent Training KSSB has sponsored and hosted several training opportunities for parents and their children this last year. Several workshops are being planned for 2005. Parents/Families are encouraged to bring their children, with care provided by school staff, in order to fully participate in the weekend activities. Check the school web site periodically www.kssb.net for the schedule or call 800-572-5463 voice.

Does your child’s educational team need technical support? There’s a well-kept secret about a service that may be available to your child’s IEP/IFSP team. The Inclusive Network of Kansas operates to empower teams of students, families, educational staff and communities to improve the quality of life and resources for learners. They offer this through Field Based Consultants who demonstrate current best practices. They have expertise in working with children and students with severe multiple disabilities including deaf-blindness, learners who have benefited from positive behavior supports, and students transitioning from school to adult services. Information on-line includes an application for technical assistance. Go to www.ku.edu/~inks/assistance.shtml or call 785-864-0276 voice.

Spotlight on Regina of Manhattan. Regina is a spunky, 90-year old redhead. She has been married twice and outlived both husbands. Her son and his family live near Austin, Texas. She recently spent seven weeks visiting them. Regina has macular degeneration and uses a CCTV, portable big button telephone with an amplifier, wrist watch with a built-in light and several other clever gadgets to help her stay independent in her home. She also loves Canasta. She uses a red and white support cane but prefers to take the arm of a friend when walking any distance. Although she lives alone, Regina has a close friend and together they check in on each other every day. I had the opportunity to meet Regina in August, 2004 at the KS Rehabilitation Center for the Blind and Visually Impaired. Kan-SAIL sponsored a special outreach training for adults with vision and hearing loss. Regina traveled to Topeka and stayed in the dormitory for four days in order to learn new skills to aid her hearing and vision loss. What a courageous thing to do! Several others expressed interest, but chickened out at the last minute. Not Regina. I even enjoyed dancing with her during one of the evening activities! Her motto is “take life one day at a time!” That’s great advice for all of us.

Spotlight Update Do you remember Jill from Topeka who was “spotlighted” in last year’s newsletter? Well here’s a nice “PS” to that story. Jill’s husband Robb and a friend decided to ride bicycles from the northern to the southern border of Kansas as a fundraiser for Usher syndrome. This project, titled “Bike for US,” which came together very quickly last fall, raised over $1,600 which was divided between the Foundation Fighting Blindness (for medical research) and HKNC (to purchase a new CCTV for consumer use). The Deaf-Blind Consortium honored Robb and Jill for their hard work with this project. Way to go!

The 7^th Annual Deaf-Blind Festivity has been scheduled at Maple Woods Community College in Kansas City, MO. The date is set for Saturday, April 16, 2005, from 10 am - 2:00 pm. 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). 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.

What’s Happening in Missouri

Missouri Deaf-Blind Association (MDBA) would like to hear from you regarding your concerns, suggestions, ideas and accomplishments. Are you able to go shopping, banking and run errands whenever you want? Do you stay at home because you are afraid to go out by yourself or do you feel lonesome? Members of MDBA know that these things are important for a quality life. Together we can make a difference! Contact Carolyn Alflen at 314-423-6141 TTY, 6114 FAX or email csuejw@cs.com

SSP Services in St. Louis? It’s early in discussions, but Paraquad, an independent living center in St. Louis would like to establish support service provider (SSP) services. Their first step is to hold a deaf-blind interpreting workshop on Saturday, May 7^th, 2005 to educate interpreters, ITP students and other interested people about the specific skills when working with Deaf people who also have a vision loss. From this training, Paraquad hopes to develop a pool of qualified SSPs to begin providing services. This would be the first formal SSP program in this four-state region! For more information, contact Jeff Prail, Paraquad’s coordinator of Deaf and Hard of Hearing Services at 314-567-1558 ext 254 voice, 5552 TTY, or jprail@paraquad.org

Linda Van Eck Niedringhaus retired as director of the MO Deaf-Blind Project at the end of January, 2005 after working for over 30 years in the field. Larry Rhodes will assume more responsibilities in his role as project coordinator. Congratulations to you both!

CapTel to Continue in Missouri The Public Service Commission approved the use of CapTel Relay Services in September, 2004 after field testing was complete. I was able to try out this unique phone last summer when the NAD Conference came to Missouri. Using voice recognition software to translate an operator’s spoken word to text, the Captioned Telephone allows the user to listen and read the text spoken by the other party almost simultaneously using a standard telephone line. This is a perfect option for persons who are hard of hearing and have some useable vision. For more information on this or other telephone technology, contact the TAP program at 800-647-8557 voice or 8558 TTY. (from MCDHH News, 3(1), June, 2004)

Spotlight on Kurt of St. Louis. Kurt worked for 26 years at Haas Baking Company where he labeled, wrapped and packaged pastries. He is now retired from that yummy job! Kurt has Usher syndrome and grew up Deaf. His vision has declined the last few years. That was one of the reasons for his early retirement. Kurt is the oldest of four brothers and sisters. Together they realized that his vision loss was cutting into his independence and creating isolation, even within the family as it became more difficult for Kurt to communicate using sign language visually. As a family, they decided that training at the Helen Keller National Center was necessary. From May to December, 2004, Kurt attended HKNC where he mastered a number of skills including: learning tactual sign language, Braille, safe cooking and food preparation skills. He also spent many hours in HKNC’s Technology Center trying different software to access his computer. Family members from St. Louis took turns traveling to New York to visit Kurt and take in the sights of NY City. Kurt purchased and became skilled in using the Screen Braille Communicator (SBC) designed to facilitate communication between him and others. HKNC staff flew to St. Louis with Kurt to help install his new lighting, devices and low tech aids. Kurt also has made connection with local service providers to continue his mobility training. He told me he is looking forward to attending the AADB Conference in 2006 to see some of his friends that he met while at HKNC and to make new acquaintances. I’m looking forward to it too, Kurt!

Guardianship/Conservatorship Manual is available from MO Protection and Advocacy on-line. It is filled with information about the process and duties of becoming a guardian or conservator, including legal references. Find it at www.moadvocacy.org or call for a print copy at 800-392-8667 voice.

The Missouri Planning Council has a terrific leadership training program titled, “Partners in Policymaking.” It’s an excellent way to increase your knowledge and advocacy skills, particularly if you serve or are interested in serving on advisory boards and work groups. If you are a self-advocate or a parent of a child with a developmental disability contact Vicky Davidson at 800-500-7878 voice or email vdavidos@mail.state.mo.us The application process begins in September with selection at the end of December. Classes run from February - September. Find out more at www.mpcdd.com (from MO Disability Network Newsletter, January, 2004)

What’s Happening in Nebraska

Boys Town Expansion. In conjunction with a presentation to audiology staff at Boys Town in November, 2004, I was fortunate enough to receive a guided tour of the new Lied Learning and Technology Center (LLTC) for childhood deafness and vision disorders. My co-presenter was Cheryl Poff, who also arranged for our tour. The facility is beautiful. It showcases a number of Boys Town’s programs including model childhood education classrooms, cochlear implant clinic and research center, distance learning center and more. Their new focus on vision disorders is still being determined so that duplication of services does not occur. For more information, see their website at www.boystownhospital.org or call 800-448-3000 and ask for the LLTC.

Nebraskans for Hearing Aid Coverage (NeHAC) is a grassroots movement comprised of individuals and organizations representing or serving people with hearing loss. Their goal is to adopt a law that will lessen the burden of purchasing hearing aids. This group has been meeting bi-monthly since February, 2004 with support statewide. Their meetings occur simultaneously using video conferencing in three locations: Omaha, Lincoln and North Platte. For more information about NeHAC, contact your nearest Nebraska Commission for the Deaf and Hard of Hearing office or call 800-545-6244 voice/TTY. Copies of meeting minutes are available on their web site at www.nol.org/home/NCDHH

Spotlight on Robert from Papillion (Omaha). Robert is approaching an exciting time in his life. He will be graduating from high school in May and will turn 21 this summer. Robert spent part of last summer at the Helen Keller National Center with other teens who were facing similar transitions. Congenital deafness and Retinitis Pigmentosa are the cause of his hearing and vision loss. He uses tactual sign language and braille for communication. In his final year of high school, Robert is working part-time at Goodwill, sorting clothes and matching shoes. He loves to work and is a quick learner. In his spare time, Robert likes to cook, keep things tidy and repair things around the house. Robert’s case manager at HKNC stated that staff truly enjoyed working with him and referred to Robert as a “ray of sunshine.” Congratulations Robert! Best wishes to you after high school.

CapTel Comes to Nebraska I wrote about the Captioned Telephone device in my last newsletter. Last summer, I was able to try out this unique phone. Using voice recognition software to translate an operator’s spoken word to text, CapTel allows the user to listen and read the text spoken by the other party almost simultaneously using a standard telephone line. This is a perfect option for persons who are hard of hearing and have some useable vision. CapTel was approved for use in Nebraska by the Public Service Commission. For more information on this or other telephone technology, contact the Equipment Distribution Program via NCDHH at 800-545-6244 voice/TTY or check www.nol.org/home/NCDHH/nedp.htm#types

For More Information

Name:_____________________________________________

Address:___________________________________________

Phone #:______________________DOB:_____/_____/_____

Email:___________________________________

Would you prefer to receive the Great Plains Regional Newsletter, Keeping In-Touch, via email? ____yes ____no

_____Please call to schedule a visit.

_____I would like to complete a National Registry.

I would like more information about the following items mentioned in this newsletter:

_____NFADB Publication--Recreation/Leisure (Spring, ‘05)

_____HKNC Training Opportunities (specify below)

_____Other Requests (specify below)

Explain:_____________________________________________________________________________________________

To return this page, simply fold in half, so the address on the other side shows. Staple or tape and drop in the mail. No postage is required. You can also contact us here:

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