Tuesday, February 17, 2009 5:30 – 7:30 PM
(Socializing at 5:30; program begins at 6:00.)
Editor’s Corner – Elizabeth Stump
Your Rights As a Person With Hearing Loss
SPEAKER: Joel Ziev, PhD, Director of Partners Welcome to the February 2009 issue
for Access, LLC. Dr. Ziev is an advocate and of the HLAA‐Manhattan News & Views!
consultant on the ADA and disability access.
Let’s be honest, February in New York is miserable,
MEETING LEADER: Joe Gordon weather‐wise. But the preparations for and the
celebration of Valentine’s Day greatly enhance and
transform an otherwise dreary, frigid month, much
Location:
like the sun breaking through the clouds on an
MUHLENBERG LIBRARY BRANCH overcast day. Valentine’s Day is a wonderfully
209 West 23rd St. inclusive holiday that everyone can participate in,
(Between 7th and 8th Ave., closer to 7th) because each one of us holds certain relationships
dear to our hearts. And in case we don’t wear our
3rd floor—elevator available
hearts on our sleeves as often as we should in daily
life, Valentine’s Day is the one designated day of the
*A group will be going out to eat after the meeting.
year during which we have the honor and
Join us! See any Planning Committee member at
responsibility to express our love and gratitude.
the meeting’s end.
There are countless quotations out there that
NOTE: Assistive listening help is provided at our
essentially say, “Let love be your greatest aim.” It’s a
meetings through live CART captioning and a room
motto to live by not just in February but year‐round.
loop for those whose hearing aids have a T‐coil.
And it’s particularly applicable when working as an
FM headsets are also available.
advocate for disability rights — this month’s topic at
the Chapter meeting — because love is at the
foundation of advocacy. It’s easy to see the artificial
barriers that we impose to exclude others due to
differences like disabilities. But as an advocate for
disability rights, we help knock down the barriers,
and in doing so, extend compassion to our neighbors.
Like Valentine’s Day, advocacy work for disability
rights is a chance to demonstrate compassion and
inclusiveness.
Next Month’s Meeting: Tues., March 17, 5:30 PM So this Valentine’s Day, when you’re thinking about
Title: Captioning: Past, Present, & Future the blessings in your life, also consider how you can
Speakers: Joe Gordon, Shera Katz, Toni Iacolucci become a better advocate for hearing loss awareness.
1
Advocating with love as its aim is a step toward CHAPTER PLANNING COMMITTEE
making every day Valentine’s Day. Join us on the first Tuesday of each month to help plan
programs & events.
See you at the February 17th Chapter meeting!
HLAA Manhattan Chapter Phone Number: (voice)
“I swear to thee by Cupid’s strongest bow,/By his (212) 769‐HEAR (4327)
best arrow with the golden head,/By the simplicity of
Barbara Bryan
Venus’ doves,/By that which knitteth souls and
barbarabryan@usa.net
prospers loves,/ And by that fire which burned the
Carthage queen/ When the false Trojan under sail Barbara Dagen, Newsletter Committee
was seen;/By all the vows that ever men have broke‐ bdagen1@verizon.net
/In number more than ever women spoke—/ In that
same place thou hast appointed me/ Tomorrow truly Mary Fredericks, Secretary
will I meet with thee.” (A Midsummer Night’s Dream, (212) 674‐9128 maryfreder@aol.com
Act 1, Scene 1)
Joe Gordon
NYJGordon@aol.com
Toni Iacolucci, NYC Walk4Hearing Co‐chair
giantoni@nyc.rr.com
Shera Katz, Web Site Coordinator
sherakatz@verizon.net
Anne Pope, Immediate Past President, HLAA Board
of Trustees; NYC Walk4Hearing Co‐chair
A Note About Josh Gendel: atpop24@aol.com
Josh’s indispensable help regarding our new
Ellen Semel
listening system prompted his appointment as our
(212) 989‐0624 ellen13@rcn.com
Chapter’s technical advisor — note his addition to
the N&V masthead at the right. Josh aided us when Susan Shapiro, Treasurer
we considered purchasing the equipment, came to sdshappy@aol.com
the first Muhlenberg Library meeting to be on
hand to help, and assisted Shera Katz in testing the Dana Simon
system. Thank you, Josh! dana2cat@gmail.com
Elizabeth Stump, Newsletter Editor
ElizabethMStump@gmail.com
Diane Sussman
dlsuss@optonline.net
Advisory Members
Amy McCarthy
Lois O’Neill
Robin Sacharoff
Professional Advisors:
Josh Gendel, Technical Director, League for the Hard
of Hearing (LHH)
Laurie Hanin, PhD, CCC‐A Exec. Director, LHH
HLAA E‐news: Do you subscribe? It provides HLAA
latest news every other week electronically. To sign
Joseph Montano, Ed.D., Director, Hearing & Speech,
up, go to: Weill Cornell Medical College
www.hearingloss.org/membership/Sen.asp
2
more hearing than were candidates in the past.
There is research going on in using light or laser to
WHAT YOU MISSED IN JANUARY
stimulate the auditory nerve; this would allow
Mary Fredericks
thousands of channels and introducing the electrode
without trauma.
We were happy to welcome Dr. Anil Lalwani once
again to our chapter meeting. Though he was slightly
The number of audiologists trained to do CIs is a
under the weather, thanks to a long plane trip from
limiting factor worldwide. Remote monitoring can
Egypt, he held the attention of our 35‐40 attendees
help: an NYU surgeon implanted a device in a
through a presentation on cochlear implants (CI). He
patient in Uganda; they were able to test and
reviewed how hearing works, CI technology and
program the device from NYU!
how it works, and recent CI advances.
Loss of hair cells in the ear causes most hearing loss.
In most of these cases, the auditory nerve is still
functioning and a CI will help by stimulating the
nerve. Only three manufacturers have been
approved by the FDA to distribute CIs in the U.S.:
Advanced Bionics, Cochlear Americas, and Med‐El. Metropolitan Calendar
As with hearing aids, all have different features,
some needed, some not used. Simply stated, a CI
takes an acoustic signal (sound) and converts it into
an electrical signal, stimulates the auditory nerve,
Saturday, February 14: Happy Valentine’s Day!
thence to the brain.
Tuesday, February 17: HLAA Chapter Meeting
Tuesday, March 17: HLAA Chapter Meeting (and St.
Typically within three months, a patient is 75‐80%
Patrick’s Day!)
functional — meaning they have reached 75‐80% of
Thursday, March 26: LHH Cochlear Implant Support
their maximum personal benefit from the cochlear
Group at the League for the Hard of Hearing
implant. By the end of the first year the patient is
50 Broadway, 2nd Floor; 5:30pm to 7pm
near maximal, and after two years, the patient is at
*For more information, call (917) 305‐7751
maximum functioning. Any improvement after that
or e‐mail audiology@lhh.org.
is quite remarkable.
An experimental totally implantable CI was not well *Mark your calendars for the annual national
accepted by patients in a study — the internal convention — and HLAA’s 30th birthday —
microphone picked up muscle sounds (the jaw when occurring June 18‐21, 2009, in Nashville, Tennessee,
chewing). Battery life is questionable, and surgery at the Gaylord Opryland Resort & Convention
would be needed every couple of years to replace it. Center (visit the resort’s site at
Apparently a remote control device is required to www.gaylordhotels.com/gaylord‐opryland).
turn it on and off. Even though performance was OK,
all the patients switched to external processors. Here is a sampling of what’s on the agenda:
Recent testing revealed that the use of curved vs. Thursday, June 18:
straight electrodes to bring them closer to the nerve *Three days of workshops begin in the afternoon —
does not make a difference. Newer processors can and new this year, there will be a track of workshops
send millions of signals per second, but most of this especially for young adults.
capability is not used as the brain won’t work that *Opening Reception and Opening Session featuring
fast. There is some work being done on thinner Keynote Speaker and Internet pioneer Vinton Cerf,
electrodes, which can provide more channels and Ph.D., Vice President and Chief Internet Evangelist of
would not destroy the remaining hair cells (which Google.
normally happens, destroying any residual hearing Friday, June 19
in the ear). CIs are now being done for people with *Research Symposium, sponsored by the Deafness
Research Foundation: An Update on the Latest Hair Cell
3
Regeneration (9 AM to Noon). physicians at the University of Illinois Medical
*Workshops in the afternoon Center. Understandably, Leon’s progress will be
*HLAA 30th Birthday Celebration! closely monitored. The next step after her
Saturday, June 20 implantation is comprehensive rehabilitation: an
*Workshops all day audiologist will program the device, by adjusting
*Trip to the Grand Ole Opry (7pm show) loudness and pitch, so Leon can interpret and
Sunday, June 21 understand sounds.
*Awards Breakfast
An ABI does not restore normal hearing, and it is not
For more details and registration, go to as effective as a CI. However, it does greatly improve
www.hearingloss.org/convention. most patients’ sound awareness and quality of life.
Visit www.mayoclinic.org/auditory‐brainstem‐
implant for more information.
Prosthetic Ears Improve Hearing
A study in the September/October 2008 issue of
Archives of Facial Plastic Surgery suggests that
Hearing Restoration: Auditory Brainstem Implant prosthetic ears improve hearing and speech
recognition in noisy environments.
Hearing was restored to a deaf patient with
neurofibromatosis type 2 (NF2) thanks to an auditory Who benefits from prosthetic ears? Patients whose
brainstem implant, at the University of Illinois pinna, or outer ear, were significantly damaged by
Medical Center at Chicago in December 2008, trauma or removed during surgery for cancer,
according to the institution. NF2 is a rare genetic because some hearing loss is caused by the pinna’s
condition that causes tumors on the acoustic nerves absence. However, often patients with missing pinna
in the brain, leading to profound hearing still have an intact external auditory canal, meaning
impairment, tinnitus, and facial numbness or that there isn’t any damage or malfunctioning in the
twitching. rest of the patient’s hearing system.
44‐year‐old Marisela Leon’s hearing disappeared William E. Walsh, M.D., and colleagues at the
when surgery to remove a brain tumor from NF2 Northwestern University Feinberg School of
damaged her auditory nerve four years ago. In Medicine in Chicago examined eight different
December last year, she underwent surgery for silicone rubber prostheses, finding that on average,
removal of a second tumor from NF2. During the the prostheses improved the pickup of sound by 8.1
procedure, she was implanted with an auditory decibels (normal conversation is about 60 decibels)
brainstem implant (ABI) device, which bypasses the when the sound frequency was 4,600 hertz, and by
cochlea and the damaged auditory nerve to transmit 9.7 decibels when the frequency was 11,500 hertz.
sound directly to the brainstem — thereby restoring [Healthy young people hear all sound frequencies
sound perception to the patient. from 20 hertz to 20,000 hertz. The highest frequency
that a healthy middle‐aged adult can hear is only
The ABI system involves a receiver/stimulator — 12,000 hertz to 14,000 hertz.]
implanted on the nerve center (cochlear nucleus)
deep in the brainstem (base of brain) — and an In the second part of the study, participants took part
external speech processor and microphone. in a speech test against a backdrop of noise. The
prosthesis significantly improved speech recognition.
Patients with a severed auditory nerve, such as from
NF2 surgery, are not candidates for hearing aids or
cochlear implants (CIs). This is because those devices
rely on working auditory nerves.
The treatment is rare — ABI surgery has been done
only about 600 times worldwide, according to
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Hearing Aid Legislation — National HLAA News *Support the Hearing Aid Tax Credit!
(H.R.2329/ S. 1410)
*New Jersey is the latest state to provide insurance Contact your congressional representatives today to
coverage for children’s hearing aids. In late urge their support for this legislation with the help of
December 2008, Acting Governor Richard J. Codey this site from the Better Hearing Institute:
signed S‐467 / A‐1571, known as “Grace’s Law,” www.hearingaidtaxcredit.org. You can also visit the
which will mandate all state‐regulated health Chapter’s Web site www.hearingloss‐nyc.org for a
insurers to cover medically‐necessary hearing aids sample letter to write to your state legislators.
for kids ages 15 and younger.
Bluetooth Meets Cochlear Implant
Under “Grace’s Law,” insurers must provide up to
$1,000 per hearing aid, once every 2 years. A covered In HLAA’s November/December 2008 Hearing Loss
individual has the option of choosing a hearing aid Magazine, Dr. Mark Ross wrote an article about
priced higher than the maximum payable benefit, but connecting Bluetooth devices to hearing aids (page
he/she would have to pay the cost difference. 28). However, there were no details as to whether
Bluetooth is compatible with cochlear implants. Visit
Hearing Loss Association of New Jersey (HLA‐NJ)
Cochlear Americas Support Center at
had been working for over 10 years to get hearing aid
www.cochlearamericas.com/Products/2048.asp for
insurance legislation passed, according to HLA‐NJ
information on several Bluetooth products that are
President Arlene Romoff. The law is named after 9‐
compatible with Nucleus cochlear implants.
year‐old Grace Gleba, whose family began
advocating for the law when she was an infant.
Visit www.graceslaw.com for more information.
*Colorado passed similar insurance coverage for
children in June 2008, and it took effect January 1, Inspiration Corner
2009. Senate Bill 57 requires health insurance
companies to cover the cost of hearing aids for
children ages birth to 18, every 5 years or if the
hearing loss changes
significantly. “Oh happy state! When souls each other draw,
When love is liberty, and nature, law:
Find additional states with hearing aid coverage for All then is full, possessing, and possessed,
children online here: No craving void left aching in the breast:
www.hearingloss.org/advocacy/govtassistance.asp Ev’n thought meets thought ere from the lips it part,
And each warm wish springs mutual from the
heart. This sure is bliss (if bliss on earth there
*Several of the Federal Employee Health Benefits be)…” (Eloisa to Abelard by Alexander Pope)
(FEHB) insurance plans now include coverage of
hearing aids for adults! (FEHB covers 8 million Let us be grateful to people who make us happy;
federal employees, retirees, and their dependants.) they are the charming gardeners who make our
However, this is good news for everyone because the souls blossom.
FEHB program is seen as a model program that
influences other insurers — so expanded hearing The greatest happiness of life is the conviction that
health coverage may be on the horizon for non‐ we are loved — loved for ourselves, or rather, loved
federal employees. in spite of ourselves.
Ask whether your own employer covers hearing aids
in your plan; if so, contact national HLAA (e‐mail
Lise Hamlin at LHamlin@hearingloss.org). If your
employer does not provide coverage, be an advocate
and alert them to the FEHB’s coverage.
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Primary Care Initiative— Community Health
Assessment: NYC Health & Hospitals Corporation Our sympathies to Karen
Cartier, who recently lost
By Mary Fredericks
her father, John Cartier;
Last spring I was contacted by the NYC Health and and to Joe Gordon, whose
Hospitals Corporation (HHC) asking for HLAA’s niece Shelley Goldberg
participation in a focus group of NYC residents who passed away.
have hearing loss. This initiative was requested by
the Mayor and City Council as part of planning to
expand primary care services throughout the city.
Other groups participating were of varying social,
Special thanks to
ethnic and language backgrounds. Our Planning
Norman Padnos and
Committee agreed this would be a valuable
Lovell Darden for
opportunity to make our needs known. Twelve
their kind
people volunteered for the meeting, and Ruth
donations to the
Bernstein agreed to be our facilitator.
Manhattan Chapter.
The final report for all focus groups was made
available for distribution in October; you can view it
at www.council.nyc.gov –‐ scroll all the way down
on the right to Hot Topics, where the PCI report is
listed. It is a PDF file, and takes a while to download Digital TV Transition Delayed Until June 12 —
its 339 pages. Our group’s recommendations are on HLAA Supports Delay
pages 97‐107 of the report. The priority issues were:
communicating with providers; communicating with In January, President Obama urged Congress to
people who answer the phone/physician follow‐up consider delaying the Feb. 17 nationwide transition
by phone; and the need for assistive listening devices to digital television by several months. On Feb. 4
in healthcare facilities (which was our only funding legislation to do just that passed the Senate and the
request [p. 205]; the other issues were more in the House of Representatives. The legislation extends the
line of sensitivity training for personnel). transition date to June 12, but no additional delay
after that date is allowed. The bill allows TV stations
It will be interesting to see how many of the report’s
to shut down their analog feeds before June 12 and
recommendations can or will be implemented, given
transmit only in digital if they wish, and also allows
the current economic climate.
consumers with expired vouchers for converter boxes
to apply for replacement vouchers.
Help the Chapter Go Green!
Would you like to receive N&V by e‐mail only
The Hearing Loss Association of America supports
rather than receive a mailed version to help us cut
delaying the transition to digital television. However,
down on paper consumption and save money? It
the organization notes that the FCC needs to address
costs about $8 a year to provide one member with
certain issues crucial for people with hearing loss —
10 issues — that’s more than half of one’s annual
particularly senior citizens because they are typically
dues. Please notify HLAANYC@aol.com if you’d
less certain about new technology. Most notably, the
like to make this change. The Chapter thanks you!
FCC should frequently test and monitor equipment
that sends out signals with captions to ensure that
Inaugural Address with Captions they can be decoded by consumers’ TVs. Satellite and
Did you miss the inaugural address? It was first cable company technicians should be educated to
posted online without captions, but now it is now know how to set up captions on digital televisions,
captioned here (click on the CC button on the right of and call centers should have staff trained to work
the video frame): with hearing‐impaired people.
www.whitehouse.gov/blog/inaugural‐address/
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Access to the Arts in New York City
OPEN‐CAPTIONED THEATER — Find captioned theater listings nationwide on www.c2net.org
Theater Access Project (TAP) captions Broadway and Off‐Broadway productions each month. Tickets are
discounted. For listings & application www.tdf.org/tap or 212‐221‐1103, 212‐719‐45377 (TTY)
*Upcoming OPEN‐CAPTIONED Shows: [Must register/order with TAP for tickets]
Shrek (2/24, 7 PM); Pal Joey (2/28, 2 PM); The American Plan (3/7, 2 PM); Blithe Spirit (3/24, 7 PM)
OPEN‐CAPTIONED MOVIES —
For updated listings, go to www.insightcinema.org or www.regalcinemas.com/movies/open_cap.html
REGAL BATTERY PARK STADIUM 11,102 N. End Avenue–Vesey & West Streets (212) 945‐4370.
REGAL–UA KAUFMAN STUDIOS CINEMA 14, 35th Ave. & 38th St., Long Island City (718) 786‐1722
REGAL–UA SHEEPSHEAD BAY‐BROOKLYN, Knapp St & Harkness Ave (718) 615‐1053.
REAR‐WINDOW CAPTIONED MOVIES — For listings go to www.FOMDI.com. Ask for a special window
when buying your ticket. The window reflects the text that’s shown on the rear of the theater
AMC Empire on 42nd Street. (212) 398‐2597, call Tues afternoon for next week’s schedule
Clearview Chelsea Cinemas, 260 W. 23rd St., Auditorium 4, 212‐691‐5519. www.clearviewcinemas.com/tripod.shtml
The Bronx: AMC Cinema Bay Plaza, 718‐320‐1659.
MUSEUMS WITH CAPTIONED EVENTS & ASSISTIVE DEVICES —
The Metropolitan Museum of Art, 1000 Fifth Ave. 212‐879‐5500 Ext. 3561 (V), 212‐570‐3828 (TTY)
Real‐Time Captioning of lectures upon request – This new service requires at least three weeks notice.
Gallery Talk with ALDs (meet at gallery talk station, Great Hall)
The Museum of Modern Art, 1 East 53rd St., Access Programs 212‐708‐9864, 212‐247‐1230 (TTY)
ALDs are available for lectures, gallery talks, & Family Programs. Infrared is available in Titus Theaters.
HLAA Social Network and Web Chats: Cochlear Americas Celebration 2009
Cochlear Celebration, a four‐day event featuring
Make new friends without leaving the house!
social and educational activities for the Cochlear
Check out the online community from HLAA at
community, will be taking place in Anaheim,
http://myhearingloss.org. Find hearing loss
California, on March 26‐29, 2009. In addition to
resources, post messages for other members, and
meeting peers with cochlear implants and experts in
join in the chat room as guest speakers share their
the field, highlights you’ll enjoy include a private
stories and answer your questions.
party at Disneylandʹs Big Thunder Festival Arena
and a Twilight Pass to Disneyland.
Upcoming Expert Chat: February 17, 7 PM, with
Paul Hammerschlag, MD, NY Otologist, on Registration ends March 15. Go here:
medical & surgical intervention for hearing loss. www.cochlearamericas.com/celebration.
Go here to submit questions:
www.hearingloss.org/Community/askExpert.asp
Mention of suppliers or devices in this newsletter
does not mean HLAA‐Manhattan endorsement,
Cochlear Implant Chat: Monday nights, 8 PM
nor does exclusion suggest disapproval.
Regular Chat: Wednesday nights, 9 PM
7
c/o Barbara Dagen,
141 E. 33rd St. (3B)
New York, NY 10016
Please check your address label for the date of your last dues payment and, if you are a National member, there will be
an “NM” after the date. Report any discrepancies to Mary Fredericks. Thanks!