The official newsletter for Puget Sound District Umbrella of Self Help for Hard of Hearing People (SHHH)
Volume 3 Issue 2
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SHHH and You
One of the keys to SHHHs success is the nationwide network which was formed out of grass roots support. It is the heart of the organization. 270 groups and chapters in 48 states acting locally to change the world for people who are hard of hearing. The groups and chapters provide an extension of SHHH National's advocacy work. The network gives the organization a grass roots presence and impacts local legislation at the same time we are all trying to impact national legislation. They also provide a means of support for members to connect with others in ways which are so hard in the mainstream, to have social interaction, a place to let their hair down, and to educate themselves about all aspects of hearing loss, and to share ways of coping.
[Quote from Brenda Battats speech to the North Carolina SHHH Conference. Brenda is Deputy Executive Director for National SHHH.]
National SHHH speaks for hard of hearing people of America. By
joining National SHHH, you let them know that you want to be
counted with those who care.
Individual SHHH National membership dues are $20 per year in 1995. For 1996 dues increase to $25. If you and your partner would like to join, the cost is $30 for two or $35 for family. The cost for partner and family membership will not increase.
Make your check payable to National SHHH and send to:
SHHH Membership Desk
7910 Woodmont Ave #1200
Bethesda, MD 20814.
If you prefer, you can send it to SHHH Umbrella (see address on page 8) and we will forward it to national for you. Thanks for Joining National SHHH.
by Gordon L Nystedt
Hearing loss can destroy families. A young man told me how his inability to admit to hearing loss destroyed his home. He never wanted to go anywhere because he had difficulty understanding. Instead of telling his wife of his problem, he just withdrew and remained silent. His wife thought he had lost interest in her and filed for divorce. Even then, he did not have the courage to admit to his hearing loss. It was not until after his home was destroyed that he came to grips with his disability.
In the May/June SHHH Journal there is an article What Families Need to Know and Do About Hearing Loss. The author, Dr. Sam Trychin states, Hearing loss is a physical condition that can affect mood, self concept, aspirations, behavior, interpersonal relationship and health. Still, with all the information now available for the asking, many hard of hearing people and their family members believe there is little that can be done to accommodate for their hearing loss or to compensate for it.
Too often communication between family members is broken off. We need to sit down with the members of our family and let them know how they can best communicate with us. Communication is a two-way effort. Both the hard of hearing person and the hearing partner must do their part to make it successful.
A man recently told me that his wife would take off her hearing aid and then expect him to communicate with her.
I cannot think of a better way to learn communication strategies than to attend a local SHHH meeting. If there is not a group in your area, let us know and we will try to get one going.
Regional Convention Coming to Portland
Mark your calendar for October 25, 26, and 27, 1996. A regional SHHH Convention will be held in Portland at the Monarch Hotel. Plan your vacation accordingly. Just ask anyone who attended the 1st regional convention in 1992. They will tell you it was one of their greatest highlights in life.
Want to learn what to expect with different type hearing aid? How good are the Programmable ones? What are the latest hearing aids on the market and how well do they function? How can I cope with my hearing loss? What are assistive listening devices and how can they help me? These are just a few of the subjects we hope to cover.
We will have nationally known speakers like Donna Sorkin, Director of SHHH, Dr. Sam Trychin, national expert on coping with a hearing loss, Virginia Bloedel Hearing Research at the University of Washington on hearing aids and research, presentation on assistive devices, and more.
The planning committee hopes to have all of the different vendors who make assistive devices and hearing aids there so you can try their products.
It costs a lot of money to put on an event like this. If you know of a corporation that could help sponsor it, please let us know. We want to keep the registration fee reasonable so everyone can attend.
Would you like to volunteer to help us? Help is needed with the registration desk, setting up sound equipment, information desk, etc.
If you would like a vendor booth, please let us know and we will send you an application form.
Details of the convention will be published in our spring issue.
Assistive Listening Systems Available For State Meetings
[Information provided by Patricia McLain, ADA Facilities Program Manager.]
The Governor and the legislature recognize the obligation of state agencies and institutions of higher education to ensure that people with disabilities are provided equal access at all meetings, forums, training sessions, public hearings, etc. sponsored by the state. Assistive technologies have been developed that can provide access for a number of people. It is recognized that most agencies/institutions demand for these technologies will be limited; the type of assistive technology required can change depending on the nature and location of a scheduled event; and assistive technologies are expensive.
Therefore, the Department of General Administration (GA) has established a central pool of assistive technology. Agencies/institutions may rent equipment from the pool. Rental fees are used to offset the costs of maintaining and replacing equipment, and to expand the equipment available in the pool.
Some individuals who are hard of hearing can benefit from assistive listening systems. GA has purchased a number of different assistive listening systems that can be effective in a number of different settings. These systems transmit a persons voice through FM transmitters to a receiver. This technology provides the listener a clear voice (free of background noise) and the ability to adjust the volume to a desired level. Listeners have the option of using a head set, stedoclip, or a neck loop. The neck loop transmits the signal to the T switch on the hearing aid. The transmitter has a range of 100 yards. The assistive technology pool has enough receivers to accommodate up to 13 individuals at a single event.
It is important to note that this technology is not the answer for everyone. It is essential to involve the individual requesting the accommodation throughout the process.
[Editor Note: It is very important that we use this equipment. If you have an appointment or meeting with any state agencies or institution of higher education, make certain you tell that agency what type of equipment you need and specify to them the accessory required. If possible this should be done a couple weeks prior to your meeting to allow transportation time for the equipment. If the agency state they are unaware how to obtain it, show them this article or tell them to contact Patricia McLain Phone 360-902-7210, Fax 360-586-5898, TTY 360-664-3799.]
ADA Law and You
The Americans with Disabilities Act (ADA) requires places such as motels, hospitals, theaters, places of employment, etc. to furnish you with the type of assistive devices you need. If you are staying at a motel and require an amplified telephone, visual doorbell or other alerting device, caption TV, be certain to ask for it at the time you make your reservation. The motels are only required to have equipment available to support four percent of the first 100 rooms and two percent of the balance.
If the equipment is available, thank them for providing it.
Update on Local Live Captioning
by Louise Becker
Youve probably noticed by now that KSTW has expanded their newscasts and is providing live captioning for all three news programs, which are at 6-7:00 a.m., 5-6:00 p.m., and 11-11:30 p.m. As of next month, Caption Colorado will be captioning the Sonics games which are broadcast on KSTW and KIRO, so this is good news for the basketball fans out there!
The support which Ive received from you [SHHH Umbrella] and the local [P.C. Lacey Group] SHHH group has meant a lot to me and it has been very much appreciated. I hope to get other [court] reporters involved so they can see what a rewarding experience this is.
[Louise Becker is a member of National SHHH. If you watch KSTW [channel 11], she is the person doing the live captioning on both the 6:00 and the 11:00 p.m. newscast.]
Group Organizing in Kitsap County
Several of you have stated you would like to see an SHHH group in the Bremerton area. This hope now looks like reality. We are grateful to Penny Allen of Port Orchard for stepping forward. We are also grateful to Lynn Byrne, Audiologist and National SHHH Professional member, for assisting SHHH in locating someone willing to take on the task. See Affiliates in action for details.
Is Your Hearing Loss Hereditary?
The National Institute on Deafness and Other Communicating Disorders (NIDCD) is conducting a research study on hearing loss and heredity. If you wish to participate, they will mail you the questionnaire and accompanying information.
The information you provide will be used to try to determine if, and what type of, hereditary hearing impairment is in your family. The type of hearing impairment will be used to match your family with appropriate research projects. When they get requests from researchers for families with your type of hearing impairment, they will inform you and ask if you wish to participate.
This is an in-depth study and should yield much valuable information for the future. If you wish to participate, contact the NIDCD at 555 North 30th Street, Omaha, NE 68131-9909. Their phone number is 800-320-1171 (v/tty); and FAX is: 402-0498-6331.
[This article gleamed from the SHHH News, Eugene, Oregon Chapter.]
Programmable Hearing Aids Keeping a Distance
by Ben Gilbert SHHH Tacoma Chapter
At SHHH meetings, I must keep a little distance from a friend.
He doesnt have a contagious disease, nor do I. There is only one reason to keep us apart - our hearing aids. Both of us own the same make of programmable remote controlled hearing aids. Unless we keep three feet away from each other, a touch of a button on one remote will change the settings on the others hearing aids at the same time.
As the voice levels of speakers at a recent Tacoma SHHH meeting changed, I kept adjusting my hearing aids. Because his aids were programmed differently from mine, my fine tuning didnt help him a bit; in fact it made his aids go berserk. He solved the problem simply; he changed seats. Three feet, the separation suggested by our shared audiologist, was distance enough.
Technically, our remotes use the same FM channel; each have a reach of three feet. But his aids are tuned precisely to his hearing loss, mine to mine. So, we continue to meet at SHHH meetings, but at arms length.
I should know about FM signals. Not too long ago, my flashing light system tried to tell me something each night around 11:00 p.m., but I could not interpret the message. There were no telephone calls, ringing doorbells or low flying airplanes, but the lights flashed nevertheless. Time to go to bed? Maybe, but how could the alerting system know?
My grandson figured it out. The culprit was a garage door opener, one which had a reach of a half a block or more. The solution: switching my system's two transmitters and five receivers from FM Channel One to FM Channel Seven. The manufacturer understood the problem and made the change for $5 an instrument , ending the nocturnal flashings. I hope they dont start making garage door openers on Channel Seven.
My hearing aids work well for me as long as I keep the distance from my friend at meetings. Will manufacturers of programmable hearing aids start building channel flexibility into their remotes? I hope they do. Or keep their customers away from SHHH meetings, an unlikely solution.
Personal FM Systems Available For Loan Through CSCDHH
Ever want to attend a wedding or funeral and the place has no assistive devices? You could still go but you know you will not understand the service.
There is good news for you!!!! If you live in the Seattle area, you can get a personal FM system on loan from the Community Service Center for the Deaf and Hard of Hearing (CSCDHH). You must provide a $25 deposit which will be returned to you when you return the system.
If you are acquainted with FM systems, then you should have no problem using this personal FM. What you would do before the event you want to attend, is give the transmitter microphone to the main speaker. If there are several speakers, it could be placed on the speakers stand. If they talk from different sections then they need to pass the transmitter microphone on to the next speaker
This system should not be borrowed to use at a place of business. In such a case you should urge the business to contact CSCDHH and rent it from them. It should only be borrowed for use at non-profit functions or places that are not required to furnish you with equipment under the Americans With Disabilities Act (ADA).
SHHH is grateful to CSCDHH in providing this service for the hard of hearing people in the Puget Sound Area. If you have any questions please contact the SHHH Umbrella or CSCDHH. The phone number at CSCDHH is 206-322-4996.
Veterans Audiology Department Thanks SHHH
Nancy Cambron, Audiologist, writes;
On behalf of the VA Audiology department I would like to thank SHHH for recognition you gave us in your most recent newsletter. We are glad your organization exists to support so many of our patients.
I would also like to update you on the progress the Seattle VA Medical Center has made with the Access 2000 program. Amplified pay phones have been installed in the main lobby area and near elevators. We have a procedure for obtaining a sign language interpreter and have distributed it to key departments. We have determined our ALD needs and are in the process of determining how the devices can best be distributed. Decisions still need to be made on pt. identification, staff education, and publicity of our program. The Access 2000 package has been quite helpful. [Editor Note: This is the National SHHH Hospital Program.] We have also received good advice from Susan Matt of Providence General Medical Center and Dr. Tom Rees from Harborview. I am encouraged by our hospitals support on this program and will let you know when it is fully in place. [Editor note: Susan Matt is Vice-president of the SHHH Eastside Chapter.]
TTY Helps Reader
Bernice Sherk, Stanwood, writes
I just wanted to share with you and other hard of hearing people. I could never conduct any business or visit by phone because of not hearing. I had to have someone else do my phoning for me. I now have received a TTY and what a blessing. I can now call out and read on the phone what is being said to me. I still cant hear in church or other meetings but have just accepted the fact that I am deaf. I can play bingo because numbers are lit up on board. I do have a Pocket Talker that helps some. I just wanted to share my phone news.
Personal FM System Benefits Children
Alice Reece, Enumclaw, writes;
What began last March with a letter to you has culminated in the purchase of an FM listening system for Sean. The purchase was entirely made possible through grants from the Enumclaw Kiwanis Club, Tacoma Sertoma Club, Enumclaw Lions Club, and the Enumclaw Rotary Club. The local support was overwhelming to us.
I am writing to thank you for your support through this process, and for the role that SHHH played. Your referral to the Auburn SHHH proved very beneficial. They were able to loan us an FM system for Sean to use in school. This helped convince us that Sean would indeed benefit from the system, and Tom Weicht was instrumental in getting information on the particular system we wanted. I want you to know that SHHH works! I am convinced that we would still be floundering or would have purchased a system blindly without the expertise lent by members with first hand experience. Thank you for being there for us.
PS. We purchased a Williams Sound rechargeable system with an environmental microphone. We also got the loop and cables and boots (which plug directly into his hearing aids.)
Please tell other parents they must try this FM system even if they think their child is getting it all with just aids. That is what we thought until our son tried the FM system. Only then did we realize what he was missing.
Milton McKinney, Vancouver, writes;
The last issue of the Umbrella was outstanding. Want to thank you for the outstanding job you and staff are doing.
We really appreciate the Mailbag and Feedback section. As you can see from my attached letter, getting information on new aids is really hard to do. Sure agree with Ben Gilbert, that the Phonak has the only T coil that has worked for my problem.
Wanted you to see my letter and plea for help. I called everyone in the Portland area, and find that most of the audiologists do not stock many aids and do not keep current on anything else. Since there is low profit on body aids, it seems that not many are made, yet this seems like the only thing that is ever going to work for me.
Sure seem like we must have a national directive on this in the industry.
Again, thanks for the wonderful job you are doing.
Sylvia Phillips, Medina, writes;
Please send me the application for purchase of AT&T amplified 710A Telephone from the state.
The AT&T shop in Bellevue Square suggest buying their amplified handset and adding it to their answering machine to produce one unit. Any thoughts on this?
Several Readers requested the necessary forms to apply for the AT&T Amplified 710A telephone from the state.
This form may be available from your audiologist, or contact the Umbrella and we will obtain one for you.
If you are low income, the AT&T 710A is available from the State at no cost. Even if you are not low income you can procure it from the state. Fill out the application and send it in. They will advise you of your cost before sending the phone. There is a time span from the time you apply until it is delivered.
If you want to purchase one immediately, contact your local phone store or contact the Hearing, Speech and Deafness Center (HSDC) in Seattle. They still have stock available. If you procure one from them and find it does not meet your needs, they allow you 30 days to return it. You can reach HSDC on phone 206-323-5770 V/TTY
Remember, no single phone technology meets the needs of all hard of hearing people.
Phil Rogers, Ocean Shores, writes;
The fall 1995 issue of Washington State News for Hard of Hearing People had a letter from Bob Bell of Anacortes, Curtailing Background Music on page 4. This letter hit a sore spot with me, and I suppose many others. Background music (noise) is a huge deterrent to hearing speech in restaurants for hearing impaired people who want to carry on a conversation. Background music is also a deterrent to talking with friends and clerks in shops, stores, markets, and malls. It interferes when it occurs, with understanding programs and advertising on the radio and TV.
I think that Bob has identified an important topic that is largely unrealized and which is rather easily corrected, once it is publicized. I agree with Bob that this is a very appropriate concern for SHHH to tackle on a nationwide basis. What are chances of getting SHHH to accomplish this?
The SHHH Umbrella is grateful to you for your generous financial contributions. Without your support this newsletter would not exist. Following are the donations received in the past quarter:
United Way Giving
Thanks for Your Support
Thanks to Professionals
The SHHH umbrella is very appreciative of the support we receive from professionals. Many of our readers are learning about SHHH because of your action. Following are the hearing professionals who readers have identified to us during the past quarter:
Hearing Loss and The Family
by Karen Utter
[From SNO-King SHHH Newsletter]
One of the best parts of my job, so to speak, with SNO-KING is that it gives me the opportunity to get to know the members. Much of this getting to know people better happens during visits to members homes or their visit to mine. Sometimes its just an informal meeting but other times its to discuss certain situations that are causing particular difficulty for someone. Of course all of these difficulties seem to be related to hearing loss in one way or another, but an important theme has come up over and over again. Hard of hearing people, including myself, seem to have the greatest difficulties and communications problems with the very people that they are trying to be closest to - - their families.
Partners forget that the other one cant hear well. Families all want to talk at once, and in many instances, just simply ignore that someone may have problems understanding. Feelings are hurt and the person with a hearing loss often withdraws, not wanting to be a bother to the others. Little by little distance between the hard of hearing person and the family increases. Some people I have talked with have completely broken with or disowned their own families because no one could understand their feelings of loss and alienation. This is so sad...........
The solution sounds so simple:
....because our hearing loss affects those close to us, we and they must do everything possible to improve communication. Our primary purpose then, is to educate ourselves, and our relatives and our friends about the cause, nature, complications and possible remedies of hearing loss.
Understanding hearing loss seems to be the key to many of the family situations. The problem is that many HOH persons simply do not understand their own hearing loss and are totally unable to explain what is going on because they simply do not know themselves!
The myths about hearing loss are far reaching. Its not just a little loss of volume. Talking loud is not the answer. Hearing aids dont fix the problem. No wonder everyone is so frustrated!
In the past this necessary information on hearing loss has been very difficult to find. Libraries have books that often are outdated and too technical. That's why we emphasize education at all of our SHHH meetings. That is the key to overcoming all of these various difficulties. Our meetings offer current information, direction, and support.
[Editor note: Karens article has extra meaning now as we approach the holiday season. Some of us will be involved in large family gathering. During all the excitement, family members may forget we have a hearing loss. This becomes even worse if there is a sporting event on TV. For many of us, it is impossible to understand with a TV blaring and ten people all talking at the same time. We cannot expect the family to shut down just to communicate with us. But we can go to another room and communicate with a few of our family members. I am extremely grateful that I have a family who always try to make me part of the conversation. But I have an advantage because I once was totally deaf and they had to write notes to me. So they are very aware of my hearing loss. Your family may not understand how you can sit in one room and talk without a problem and then go to another room (maybe where the TV is on) and not understand a word. It is up to you to educate your family to your hearing loss.]
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