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SHHH in Kentucky

Newsletter - Summer/Fall 2000

Chapter/Group activities.....Pocket VCO in KY now.....AA for HOH
movies.....ALDs from Becky Morris.....Make A Diff Day
Hilary on infant screening.....questions you ask.....iCommunicator

What's happening around the state

Did anyone miss the July issue? My computer caught a virus and lost the entire state data base. Not to mention all my notes on the content of the news! So this one will be a combination issue for July and October. There has been a lot happening in Kentucky recently, and even more across the country in terms of new technology to make our lives easier.

Around the state, people have been busy and active. It is interesting that Northern is hanging in there - they might be back to group status one day . . .

Northern Kentucky
On August 5th, we had an SHHH cookout at Sharon Baker's house in Cincinnati. Also we had the Greater Cincinnati Cochlear Implant Association meeting the same day on music appreciation.

We try to get together for captioned movies whenever possible.
---Lou Ann whelchel

Capitol City Group - Frankfort
Diane Pratt from the Frankfort Regional Medical Hospital (who came and spoke to our group in Nov. 99) came back to discuss the collaborative efforts made by Jayne McRae from SHHH and herself from the hospital. They have been working together to make the hospital more communication-accessible and the new procedures that will be put into place to identify HOH patients. They plan to start the identification process at registration and use the international ear symbol. We are excited about this and hope to see an article about their collaborative efforts in the local paper.

In September, I am going to the SHHH leadership training in MD (I am so excited!)

Paula Esterle is coming to our group in September to speak about the outreach program. I have been studying the SHHH Chapter Development manual about making public service announcements and sent letters to the three community radio stations. I got a message the other day from one of them inviting our group to do a radio talk show sometimes. I think we are still in the "awareness phase" trying to be more visible in the community. I don't know what Oct. will bring just yet. Hopefully I will come back from Maryland full of ideas!!!
---Lori Bishop

Derbytown - Louisville
We are having a big change and that started at the May meeting when we had Mauray Weedman from the Louisville Public Library, who mentioned free public meeting roooms for nonprofit groups. So we checked them and found one for our own meetings. The new room is set up for our real time captions. Our first meeting in it was in September.

In June we had Capt. Rich Hancock and Lt. Col. Cleteus Blandford of the Louisville Fire Dept Talking about fire safety and the 911#. We also discussed smoke alarms and ways to leave a burning building safely.

In July, Terese Campbell of the Kentucky Hospital Association talked about accommodations being made for HOH people in hospitals. She was looking for input about what our needs are, and what information she could pass on to the hospitals. We told as much as we could think of right there and then agreed to put together some ideas later also and share with her.

In August we had the annual picnic in Brown Park. We are pleased to announce that the bees did NOT join us this year! And September was our fist month in the Library! Our speaker was Tanya Barlow of Audiology and Balance Centers of America, talking about the various balance problems that are often associated with hearing loss and ways of treating them with a new approach.

We have a yard sale planned for Sept. 16 from 8:30 to 3:30 at the Tucker's house at 4118 Suwanee Dr. in LaGrange.

Our informal dinners continue to be a success - we found a private room at the Picadily that gives us more peace and quiet to be noisy on our own. We've had several new members join the group in the last few months and enjoyed getting acquainted with them!
---Mary Lee, Mel Magruder, Louise Wisdom

Bluegrass Group - Danville
In May we assisted with the National Day of Hearing and at the May meeting Bob Stuckey from Hamilton Relay Services presented information about the KY Relay. The members seemed to enjoy this very much. Most of them were unfamiliar with the relay and found it all very interesting. We did not meet in June. In July we watched a video tape about telecoils and discussed our topic for the next month. The Patient Representative from Ephraim McCowell Hospital, in Danville, came to our August meeting to hear our concerns about how their needs would be met during a hospital stay and to share with us any procedures they use.
--Patty Edwards


Ultratec Announces New Captioned Telephone
MADISON, WI -- Ultratec, Inc., has announced a breakthrough technology which allows people who have difficulty understanding what is being said over the telephone to receive live captions of their telephone conversations. This new technology, known as "Captioned Telephone" or CapTel, is the key to making such telephone calls functionally equivalent with traditional voice calls, enabling people who are deaf, hard of hearing, or who have language disabilities to enjoy telephone conversations with the same ease, speed, and confidence as telephone callers everywhere.

The Captioned Telephone is similar to captioned television, where spoken words appear as written text for viewers to read. The Captioned Telephone looks and works like any traditional phone, with callers talking and listening to each other, but with one very significant difference: captions are done live for every phone call. The captions are displayed on the phone's built-in screen so the user can read the words while listening to the voice of the other party. If the CapTel user has difficulty hearing what the caller says, he can read the captions for clarification.

Here's how it works. From the user's perspective, the captions appear nearly simultaneously with the caller's spoken words. The user merely presses the "Captions" button on the Captioned Telephone, which transparently connects the call to a service which provides the captioning. At the service center, an operator who is trained to use a voice recognition computer re-voices whatever is said by the other party. The voice recognition system transcribes the operator's voice into a text stream (captions) which is spliced together with the called party's actual voice and sent down the line to the Captioned Telephone. When the Captioned Telephone receives this combined information, the voice and text are split so that the voice goes to the earpiece of the phone and the captions go to the display screen.

"Being unable to understand what is said over the telephone is one of the greatest frustrations a person with hearing loss or language disabilities experiences," explains Robert Engelke, President of Ultratec. "Even when a person has difficulty hearing or understanding every word, the Captioned Telephone allows them to hear the tone of the other person's voice, their emotional emphasis, and the many other cues one gets over the telephone. The captions ensure that each word can be understood clearly and accurately. This combination of sound and text allows people to use the telephone in a much more functionally equivalent way to traditional voice calls."

The Captioned Telephone builds upon a variety of new technologies developed by Ultratec, some of which are now becoming available through the national Telecommunication Relay Services. "After nearly ten years of research and development, Ultratec believes we've achieved a significant breakthrough in providing accessibility to the telephone," explains Kevin Colwell, Vice President of Research & Development. "We are very excited about what this new technology will mean to millions of people, their families, and businesses worldwide."

Ultratec demonstrated its new Captioned Telephone technology at the annual Alexander Graham Bell Association Conference in Philadelphia, PA, and plans to conduct consumer trials of the service over the next few months.

Ultratec is the world's largest manufacturer of text telecommunication devices and amplified phones for people who are deaf, hard of hearing, or language or speech-impaired. The company has been active in developing emerging technologies for Relay Services, Emergency Care Providers, and Public Facilities to ensure that telecommunications is accessible to everyone.


Pocket Voice Carry Over Phone now available
from Distribution Program!

The new PVCO phone is now included in the list of equipment that all hearing impaired Kentuckians can receive free from the TTY Distribition Program. This is the littlest piece of technology we have used for this purpose. You can keep it in your pocket and then strap it on any phone anywhere and use the Relay to make a phone call.

You are eligible to receive equipment from the TDD Distribution program if you meet the following criteria:
You must be a legal resident of the Commonwealth of Kentucky.
You must be at least five (5) years of age. (If you are under 18 years of age, your parent/guardian will assume full responsibility for the equipment.)
You must be deaf, hard of hearing or speech impaired to the extent that you cannot use the regular telephone for communication without the use of adaptive equipment.
You must be living in a home that is currently subscribing to a telephone line and paying the monthly telephone bills.

Get an application from the TDD Distribution Program by calling 1-800-372-2907 or sending a note to 632 Versailles Rd. Lexington, KY 40601. Online go to KCDHH and choose Equiplink for details.

You will need to fill out part of the application yourself and then take it to a professional for certification of your hearing loss. These can be doctors, audiologists, vocational rehabilitation counselors, hearing aid specialists, speech-language pathologists, or any agency serving deaf, hard of hearing or speech impaired consumers.

You will also have to send in a copy of the telephone bill page that has your name and address on it, to show that your home has phone service.

The following items are currently being distributed by the TDD Distribution Program:
1. TDD (or TTY)
2. Amplified Telephone
3. Voice Carry Over (VCO) Phone, AT RIGHT ------>
4. Telephone with VCO/HCO Amplified features
5. Pocket VCO
6. Large Visual Display TDD
7. TDD with Braille
8. Visual Alert Signaler
9. Tone Ringer


How do you go to an AA Meeting if you are hard of hearing?
There is something new in the online meeting scene and it answers the above question somewhat. I say "somewhat" because an online discussion might not be the perfect solution for everyone. But there are now several AA groups that meet online. Among them is one devoted exclusively to people who are deaf and hard of hearing. This one is Sounds of Sobriety . SOS was designed to help people who want to recover from alcoholism, but because of their hearing loss cannot benefit from face-to-face meetings. It is a closed group and will protect your identity. Go to the above web site, or send e-mail to the moderator.

Other online resources that are not specifically for hard of heairng people but do have online e-mail meetings are:
Lamplighters They claim to be the world's largest online group, started in 1991.
Gay Sober For gay men and women.

Click on the following to send an e-mail message for more information or to join:
CY8 Women's Meeting
AA-Serenity . This one is for women only.

There are many other groups that have real-time meetings and chat rooms. Check this web site: AA Online Meetings for a comprehensive list of all these resources.


Most of us love movies! And we love to go to captioned movies now that there are so many. In the past we have advertised all movies being shown in both the newsletter and on the state web site. However since the editor discovered that we are now getting movies of all kinds, good, bad, awful, and sometimes disgusting, we need to turn the movie scene over to the grapevine! By now we all know that the Showcase cinemas have these in our cities. Check your local newspaper for times. Or check online at National Amusements. If you want to request movies for your area, contact us and we will help you get started.


BeyondHearingAids

In northern Kentucky, Independence to be exact, there is a business that caters to our needs. It is Effective Communication Solutions, Inc. It is owned and run by Becky Morris. She has put out a new newsletter that she calls BeyondHearingAids. In this she says "you will find the latest on assistive hearing technology, manufacturer's news, answers to frequently asked questions, as well as application tips and other news . . ." Becky stays up-to-date on all the latest in technology. She specializes in a service to outfit your entire house or workplace with whatever you need to be able to function there with a hearing loss. Work-related problems can be especially difficult to solve and she enjoys solving those. Contact her if you would like to be on her mailing list, e-mail Becky.


Helping Hands

Make a Difference Day will be Saturday, October 28 2000. This something that SHHH has not gotten involved in before, but National asked us to try this year. Unfortunately the idea came about rather late and the deadline for submitting an idea is Sept. 11. So we in Kentucky aren't going to make a difference this year - at least not publicly.

But this IS a very good idea. How could we make a difference for HOH people? We need some ideas and plans for next year. This may take awhile to create.

And you not only help someone, but can get a grant for $1000 from Walmart to accomplish it, in addition to awards given for the projects. So let's think a bit and get back to this later in the the year. Surely we can make a difference somewhere . . .


TALKING IT OVER
BY HILLARY RODHAM CLINTON

RELEASE: WEDNESDAY, AUGUST 2, 2000, AND THEREAFTER
Yesterday, the Office of the First Lady had a special visitor.

Five-year-old Matthew came to work with his mother, a member of my staff. Like many 5-year-olds, Matthew is curious and active. It would not be immediately obvious to anyone watching him interact with everyone in the office that he is also deaf. Matthew's hearing loss was first diagnosed when he was 13 months old. Although he received hearing aids and intensive speech therapy right away, and now goes to a special school, Matthew remains more than a year behind in his language development. His mother says, "I wish he had been tested at birth. It's hard to watch him struggle to communicate, and know that we lost that important first year."

Every day in this country, 60 babies are born with some degree of hearing loss -- the most common congenital disorder found in newborns. And although most hearing problems are diagnosed by the time a child turns 3, by then it's often too late. Speech and language development are delayed, affecting social and emotional growth as well as academic achievement. Some children never catch up.

This is why experts from the National Institutes of Health, the American Academy of Pediatrics, the National Association of the Deaf, and the American Speech-Language-Hearing Association recommend screening all newborns for hearing before they are discharged from the hospital.

In addition to the developmental and academic problems that occur when diagnosis is delayed, there are several other reasons to screen infants. The earlier a deaf or hard of hearing child is identified, the earlier a child will receive critical support services, such as hearing aids, exposure to sign language or speech therapy.

We were surprised a few years ago to learn that reading and talking to babies -- even those too young to respond -- lay the groundwork for vocabulary and later reading success, and actually enhance the capacity of the growing brain. Imagine the disadvantage for the child who can neither hear the stories we read nor enjoy the songs we sing. It should come as no surprise, though, to learn that when these children receive appropriate intervention before 6 months of age, they develop significantly better language skills, minimizing the need for rehabilitation when they start school.

According to research done at the University of Colorado, the age when a child's hearing loss is first identified and intervention begins is the single best predictor of educational success. Furthermore, early intervention can save taxpayers nearly $100,000 in education, medical and therapy expenses over the course of the child's life.

Screening is accurate, quick, inexpensive -- ranging from $18 to $40 -- and simple to perform, even on newborns. Last month, a new law mandating universal newborn hearing screening took effect in Maryland. Before then, as in so many other jurisdictions, the only newborns tested were those identified as being at "high risk" for hearing loss. Risk factors included low birth weight, admission to the newborn intensive care unit, jaundice, birth defects of the head and neck, meningitis and a family history of hearing problems.

Unfortunately, only about half of the babies eventually diagnosed as deaf or hard of hearing fell into the high-risk category and were tested before they left the hospital. Now, every child born in Maryland -- as well as more than 30 other states -- will be screened before they go home. For the last two years, the President's budget has included funding to expand and develop universal newborn hearing, screening and intervention programs. Earlier this year, the Department of Health and Human Services distributed the first $3 million to states in the form of grants. It's time to take the next step.

Matthew was lucky that his parents and his doctors picked up his hearing loss as early as they did. But a simple test, shortly after he was born, most likely would have identified his disability even earlier, making it easier for him to develop language skills and keep up with his buddies academically.

We know that hearing loss is the most common congenital disorder afflicting children in this country. But thanks to remarkable new technologies, we also know how, for many children, to mitigate its worst consequences. The key is early detection -- and now is the time to act. Now is the time to screen all newborns for hearing before they leave the hospital.


Questions questions questions questions

My new hearing aid helps enough most of the time time, but in noisy places like restaurants, I'm lost! My family tries to make me understand but sometimes it seems worse than with no hearing aid at all. What can I do?
You share this problem with almost everyone who has hearing loss and wears a hearing aid. The aid does improve your hearing a great deal but can't always block out the background sound that is so difficult to listen through. Some people find that using an FM system, such as the Williams Sound, or the less expensive Sound Wizard help pull in just the sound you are closest to, while not amplifying the more distant and annoying sounds from other people around you. There are also some new boot-style FMs that have just a small "boot" that fits on the end of your hearing aid. A microphone placed on the table in front of you picks up the voice of the people you are talking to.

Even these FM systems are not perfect about blocking out the background sound. They do improve it a lot. You still have to do a lot of rearranging to get the sound where you want it. It may help to sit in a corner, or with the noise behind you. You will have to experiment with this in different settings. Don't be afraid to tell the waiter that your table is in a noisy area and you need some quiet!

I have to get a hearing aid now because my hearing has finally dropped to where I can't follow conversations well enough, but I'm worried about getting the right one. What will I do if the first one isn't right for me? I don't want to get stuck with it.
Your audiologist or hearing aid distributor will explain to you what the policy is on returns. You will have a 30 day trial period - sometimes longer. During this time, if you are not satisfied, it can be returned. However, the professional who fits you for the aid will make the best choice possible for the type of hearing loss you have and also consider how you intend to use the aid. This won't be as difficult as you may think it is. There is a return policy for earmolds also - and this is more likely to needed! Sometimes an earmold will be too tight or uncomfortable, so if you need to have another impression made for a new one, you can do so. Just be sure you are clear on how long the trial periods are for both the aid and the earmold. They may be different.

I saw an ad for a local meting that said they have "CART" What is this?
CART stands for compter assisted real time. It means that the meeting will be real time captioned, just like on TV! A court reporter types on her steno machine - just like in court. But the machine is hooked up to a computer, and then to a projection unit that places the captions on a screen or the wall. In this way, everything that is said at the meeting will appear on the screen. All of the meetings and events at the SHHH national conventions use CART. The Derbytown Chapter meetings are also captioned. Sometimes a person needs to have this captioning service just for himself. It can be done the same way, but with a laptop computer for him to look at.

I got the application form from the TDD Distribution Program and it lists all these different phones I can get. But I'm confused about it because I don't know anything at all about any of them. How will I know what to ask for?
This is a good question and one we get often. If you are lucky enough to be near a local SHHH group in Louisville, Frankfort, or Danville, you can ask people at a meeting. They will be delighted to tell you all about the different phones! What phone you get depends on your hearing loss and how you plan to use the phone. Several of the phones have TDD keyboards. If you want to be able to talk to people directly without the relay, you will need a keyboard. If you plan to always use the relay, then perhaps you will want the VCO phone or the Pocket VCO. If you have a mild hearing loss and can hear on a phone with some amplification, then you will want the amplified phone. There are several items for those who also need larger print or Braille.

It is important to think about whether a particular phone is right for all your needs. Don't get a simple TDD, if sometimes you will want to use relay. Or the Pocket VCO if sometimes you will want a keyboard. And don't pick an amplified phone if sometimes you talk to people who are just too hard to understand on the phone. Many of the HOH crowd have found that the VCO phone is the best choice for them because it can be used so many different ways - as a TDD, a VCO phone, a regular phone, and an answering machine.

(If you have a question for us, please send to the editor and we will try to answer it next time!)


New Technology may replace both CART and interpreters in the classroom.

Morgan Greene in Florida wanted to be able to understand his teachers and his friends in high school. He is deaf. Morgan had an idea he had gotten from using AOL that there might be a way to solve his problem. He and his mother approached Teltronics Inc. about it. The result is the iCommunicator. While there have been speech-to-print programs in use in classrooms across the country for several years, these were limited to transcribing the teachers words only. And still left the student hampered in his ability to follow other things that were going on in the classroom and unable to talk to his fellow students.

The iCommunicator consists of a laptop computer and a microphone headset for the speaker. It not only gives the student a complete real time print of what the teacher is saying, he can save the text for study later. Part of the screen has Sign language interpretation taking place at the same time in Signed Exact English. (There are plans to add an ASL module to this eventually.) There is also direct hookup for FM sound to reach the sutdent's hearing aid or cochlear implant. In addition there is a print-to-speech option also that gives a non-voicing student a way to talk to hearing people in the room. And finally, this is not limited to a classroom. Morgan can take it out with him for use when chatting with his friends.

It's expensive! It costs $8000. But compared to the cost of an interpreter, not so bad. There is a somewhat less expensive option to use a standard computer rather than a laptop, but that would not be mobile.

At this time there are none in use here in Kentucky. Teltronics has said there will be a demonstration of it at Kentucky School for the Deaf and that we will be notified about when that will take place. If anyone is interested in seeing this, contact Mary Lee.

Several years ago when the SHHH convention was in Phoenix, there was speaker from Dragon - the company that pioneered speech-to-print software. Many of us descended on him after his presentation, asking just how soon this would be useful to us as an interpreting tool. It is safe to say we terrified the poor man!

Since then several software companies have put out programs for talking to your computer rather than typing. The biggest problem with them has been that they were for just ONE person. After that they would have to be retrained to a different speaker's voice. This iCommunicator has apparently gotten past that problem.

We might also note that the new telephone from Ultratec above, is also using this type of technology. Things are improving for us!