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					                                   NYPN Newsletter
                           Serving Families of People Who Are Visually & Hearing Impaired/
                                     Multiply Disabled Throughout New York State
                               Volume 5, Issue 1                            Spring 2009

                             President’s Message             By Sonia Hartmann

                       We are delighted to share so          website is being updated.
                       much “good news” about NYPN.          Barbara Loughran emails NYPN
                       Our members accepted the slate        e-news monthly to supplement
NYPN is an Affiliate   of officers. I look forward to        the newsletter. (Page 5)
    of NFADB           serving as your President in the      Our Focus Groups continue to
The National Family    upcoming year as we increase          "meet" via conference calls each
  Association of       support to families statewide.        month. Clara Berg started a new
    Deaf-Blind         The Board welcomes Brent Bailer       group: English speaking parents
                       and Jose Canadas. (See page 8)        of children with dual sensory loss
                       NYPN has attained 501(c)(3) tax       ages Birth-6. (Page 7)
                       status, making donations tax-         We hope to have four regional
NYPN is a 501(c)(3)
                       deductible, and enabling us to        conferences again this fall.
                       apply for grants. We will actively    Specific dates, locations, and
                       pursue fundraising in the year        topics will be announced in NYPN
 Donations are         ahead. We applaud Mary Conlon,
Tax-Deductible                                               e-news and online. Hopefully,
                       our treasurer, for her hard work      our members and interested
                       throughout this process.              families will be able to attend
                       A featured article in this issue is   and gain knowledge of issues
                       Technology. NYPN is embracing         related to deaf-blindness.
                       technology to communicate             NYPN is proud to cosponsor
Pull Out Poster:       information and events online.
Transition Through                                           NYDBC's Parent Leadership
                       Brent Bailer created NYPN Pages       Training, see the article below.
the Ages Timeline
                       on MySpace and Facebook to
                       keep us connected, while our          We hope to communicate with
                                                             many of you in the year ahead.
                        NYDBC Parent Leadership Training                      By Clara Berg

   Contents:           NYDBC, New York Deaf-Blind            Participating families will attend
                       Collaborative is organizing           three full weekends, during a
  Stars        2       Parent Leadership training for 6      seven-month period, with work-
  NYPN Events 3        to 8 families who live in the         shops by experts in the field.
  Technology   4       western part of NYS (between          NYDBC will provide parents with
                       Buffalo & Syracuse), to take          support and guidance as they
  Technology   5
                       place in Rochester next summer.       complete assignments between
  In the News 6                                              meetings.
                       Families will learn how to
  Resources    7       advocate for their child, how to      NYPN will co-sponsor this parent
  Membership 8         create a community project, and       training initiative and lend our
                       how to support state or national      support and information. If you
                       initiatives to support the            are interested, please call Clara
                       education and well being of           Berg (718) 997-4855 for more
                       people with deaf-blindness.           information.
New York Parent Network Newsletter                                             Page 2

                              Sierra W. graduated from Lexington School for the Deaf
                        in June 2008 with an IEP Diploma.
                               She has enrolled in LaGuardia Community College Deaf
                        Adults continuing education program to study for the GED.
                               Sierra’s goal is to enroll in a program to become a
                        counselor to deaf-blind individuals.
                              Her proud mom, Arlene M., believes that with Sierra's
                        determination she will succeed.

                             Ben P. will graduate from the Devereux School (in Red
                        Hook, NY) in June.
                             Ben and his mom, Evelyn, have been working on Person
                        Centered Planning.
                             Ben plans on living in a group home, working in
                        supported employment, and expanding his many interests.

                              Eric S. will graduate from the New York School for the
                        Deaf in June. Eric attended this school for the past 16 years,
                        where he learned basic sign language to communicate.
                              Eric is planning on spending eight weeks at the Helen
                        Keller National Center for a Vocational Evaluation and

                              Andrew G. will graduate from the Eighth Grade at
                        George Fischer Middle School in June. He earned High Honors
                           Quinn’s story
                        throughout the last school year. Andrew won First Prize in the
                        Science Fair at George Fischer Middle School.
                              Andrew looks forward to going to Carmel High School in
                        the fall. Andrew has a long-term goal of becoming a
                        professional chef.

  Email epopper222@aol.com to share your child’s photos and success stories.
Page 3                                                New York Parent Network Newsletter

The Circus of the Senses
        By Evelyn Popper
      Eleven NYPN families attended a
special production of The Big Apple
Circus this past October. Once a year
the Circus presents The Circus of the
Senses that is planned specifically for
people with visual and hearing
        Circus performers greeted each
child as we entered The Big Tent.
Programs in braille or large, high-contrast   Andrew rode his tandem bike in his first
type were offered at the door. People         public cycling event, a 15-mile route as part
                                              of Tour de Putnam.
with visual impairments had seats in the
first few rows, and sign language
interpreters were placed around the ring.
                                              Physical Education & Recreation
Head- phones were available to provide               We want all of our children to have
an auditory description of the                full and active lives, with opportunities to
performance.                                  explore interests.
       What a wonderful experience it               The Internet has made it easier to
was! We were delighted by the dare-devil      access information about adapted sports
balancing acts, performing dogs, trapeze      and recreation in our communities. Here
artists, jugglers, clowns, music, lighting,   are some new resources for you.
parades, and elaborate costumes.              Webcast: Adapted Physical Education
      After the show's finale, performers     www.perkins.org/webcasts/
returned to the ring and invited the          Video on Physical Activity: Teaching
audience to join them for some “close-up      Children with Visual Impairments
and personal” time. Children got to swing     Free online video - physical activity for
on the trapeze, pet the animals, try          students who are blind, or deaf-blind.
juggling, and ask questions. The post         www.campabilitiesbrockport.org/Camp-
show was as thrilling as the show!            Video.htmll
      “Thank You” to the Big Apple Circus     Achilles (Track, Tandem Bike)
for providing such a memorable day.           www.achillestrackclub.org
                                              Adaptive Sports in NY City & State
                                              NYS IRRC Recreation Referral Service
                                              Assists - identifying recreational interests
                                              goals, & community resources/inclusion.
                                              The National Beep Baseball Assoc
                                              Therapeutic Horseback Riding in NYS
                                              NARHA Directory www.narha.org
 New York Parent Network Newsletter                                                  Page 4

                          New Seika Braille Display
                         By Adaptive Technology, a division of Perkins Products. This 40
                         cell refreshable Braille display is lower in price ($650), and
                         comes with a two-year warranty. The screen reader software
                         interface works in tandem with most screen readers. It is light-
                         weight, compact, portable, and connects to a USB port on
                         Apple or Windows computers running Windows XP or Vista.

                        Universal Reader
                       The "Read Anything Anytime Program" The Universal
                       Reader is a very easy-to-use utility that reads to you. It works
                       with virtually any application. Use it to read your email, your
                       WORD documents, even web pages. It is as simple as selecting
                       what you want to read and clicking on the floating toolbar and it
                       starts to read. Price: $49.95

                       Next Generation TM Perkins/APH Brailler
                      Less Force. Less Weight. Less Noise. More Possibilities...
                      The Classic Perkins Brailler® retains all the attributes that made it
                      the most widely used Braille writer, with added new features that
                      make it more portable and easier to use. For Federal Quota Fund
                      orders, contact 1-800-223-1839 or visit www.aph.org/.

                                                Video Relay Service
Many consumers who use American Sign Language prefer Video Relay Service (VRS);
however, VRS can call a hearing person using Hearing Carry Over or Voice Carry Over.
It is differs from traditional Relay Service in that either a videophone with TV or web
camera with computer screen is used. In addition, the Video Interpreter (VI) views the
person using ASL and relays the conversation to the hearing caller, via voice.
This service requires a high-speed Internet connection with a web camera or special
videophone equipment. There are usually no phone charges since it utilizes the Internet.
If a Video Interpreter is not available to answer the Video Relay call, hearing callers can
leave a message through the VI, which is left in a mailbox for the recipient to view later.
One problem has been waiting for a VI to become available to place a call, which is
being addressed by extending VRS service hours, or using a call back option.
Video Relay Service Providers: AT&T, Hamilton, IP-Relay VRS by MCI, Sprint, Sorenson.
   Page 5                                                  New York Parent Network Newsletter

DeafBlind Communicator
HumanWare has developed a new deaf-blind
communication system. The basic DBC provides
three types of communication for deaf-blind
users: face-to-face, TTY, and SMS Texting.
Portable Components are Easy to Carry
The DBC consists of two separate components
that deaf-blind users can easily carry wherever
they go. The main unit is the DB BrailleNote,
which is a BrailleNote mPower (Perkins and QWERTY models available) with special deaf-
blind software installed in it. The companion unit is the DB-Phone, which is a special cell
phone with a visual display and a QWERTY keyboard that also has unique deaf-blind
software installed. The two components communicate wirelessly with Bluetooth.
Face-to-face Communication Wherever You Go
DBC users can now communicate with anyone by activating a face-to-face chat. By
following a simple menu on the DB-BrailleNote, the DB-Phone can be activated and
handed to a sighted person. The DB-Phone has a retractable security tether. A message
is both spoken and displayed on the DB-Phone stating, “Hi, I’m blind and I can’t hear. To
communicate with me, type a message on this keyboard and press Return.” Whatever
the sighted person types on the DB-Phone in text is sent to the DB-BrailleNote user and
displayed in Braille. The DBC user can then type a response on the DB-BrailleNote and
send it to the DB-Phone and so the conversation continues.
Communication with Other BrailleNote and DBC Users, TTY Integrated into the
DB-BrailleNote, & SMS Texting to Other Cell Phone Users
Text messaging is one form of communication between cell phone users. A SIM card can
be purchased from a wireless provider and installed in the DB-Phone. Following the
same basic steps used when activating a TTY call, DBC users can choose to activate the
DB-Phone to send text messages. Because of the Bluetooth connection, DBC users never
need to access the phone directly. Everything is controlled right from the DB-BrailleNote.
Keeping It Simple with KeySoft
The DBC is designed to be simple and straightforward with the goal of enabling any
Braille user to learn to use it with minimal training. The DBC uses a condensed form of
BrailleNote mPower’s user-friendly interface called KeySoft.
Activating Additional mPower Applications
Computer users can activate the full power of the BrailleNote mPower: word processor
with spell check, planner, email, Internet browser, and bookreader applications.

Informative Resource: “Comparison of Text-To-Speech Systems”
PEPNet Perspectives Fall 2008 www.pepnet.org/newsletter/2008%5Ffall/
Speech-to-Text Services deliver spoken information such as lectures, presentations, and
classes as text on a computer screen in real time or as printed documents.

Email bloughran@optonline.net to receive our monthly updates, NYPN e-news.
 New York Parent Network Newsletter                                                Page 6

      In the News                            Deaf-Blindness Found in Five
                                             Percent of Population with
HearSeeHope                                  Developmental Delays
HearSeeHope is a 501(c)3 non-profit          The incidence of deaf-blindness in the
dedicated to funding Usher Syndrome          general population is estimated to be
research. It is a founding member of the     less than 1%; however, a study in the
Coalition for Usher Syndrome Research.       July - AMERICAN JOURNAL OF MENTAL
Breaking research news – “Gene               RETARDATION reported that the preva-
Therapy provides vision to nearly blind      lence of deaf-blindness amongst adults
young adults. Three young adults with        with developmental delays was 5%.
virtually no vision can now read several     The purpose of this large-scale study was
lines on an eye chart and see better in      to determine the prevalence of sensory
dimly lit settings thanks to an innovative   impairments and identify associations
gene therapy aiming to reverse blindness     within the population of people with
in a severe form of retinitis pigmentosa     developmental delays. The prevalence of
known as Leber congenital amaurosis or       deaf- blindness was 5.0% (2.9% for
LCA. The three individuals are part of a     those less than 50 years and 11.0% for
Phase I clinical trial at The Children's     those age 50 older). Apart from age, risk
Hospital of Philadelphia.”                   factors for deaf-blindness included more
They hope to “develop gene therapies to      severe disability and Down Syndrome.
treat a variety of retinal diseases          Results show that the risk of combined
including Usher syndrome.”                   sensory impairment in this population is
www.hearseehope.com/research.htm             significantly increased compared with the
                                             general population; however, only 12%
Building Blocks of Intervention              had been diagnosed as deaf-blind.
Produced by the Deaf and Hard of             Implications are that multiply disabled
Hearing Program (DHHP) of                    people with deaf-blindness are under
Children's Hospital Boston, Building         identified and, therefore underserved.
Blocks of Intervention is a series of six
webinars designed for early intervention     Braille Literacy
specialists and parents of young deaf or     2009 marks the bicentennial of the birth
hard of hearing children. Titles include:    of Louis Braille. Commemorations below:
 •   Assuring Early Access to Language &     Louis Braille Bicentennial Website
    Understanding Hearing Loss               www.nbp.org/ic/nbp/louis/index.html
 •   Optimizing Access to Sound Through      Louis Braille Traveling Exhibit 10/1-21/09
    Amplification                            Talking Book & Braille Library, Albany, NY
 •   Launching Communication through         Braille Literacy Scholarship Program
    Sign Language                            www.humanware.com/braille_literacy
 •   Accessing Audition Through Cochlear
                                             ReadBooks! is a national children's braille
                                             literacy program to encourage families to
 •   Promoting Communication in the
                                             read print/braille books together.
 •   Understanding the Impact of
    Hearing Loss on the Family System        Braille & Talking Book Library (PerKIDS)
www.childrenshospital.org/clinicalservice    www.perkins.org/btbl/perkids/literacy
s/Site2143/mainpageS2143P17.html             Books & Toys www.braillebookstore.com
 Page 7                    Resources                 New York Parent Network Newsletter

                                                      NYPN FOCUS GROUPS
                                                        Monthly Conference Calls
                Kids & Sibs                                Ongoing Support

                                              Usher Syndrome Group
          Pocket Braille Cube                 Third Tuesday of the month at 8:00 pm
          Learning tool/toy $3.95             Call Sonia at (315) 637-6503
                                              Birth to Six Spanish
                                              Second Tuesday of month at 9:00 pmN
                                              Call Clara at (718) 997-4855      e
          Hide-n-Seek Snoozy
          Talks to let you find where         NEW Birth to Six English          w
          he’s hiding!                        Call Clara at (718) 997-4855
          www.perkins.com                                                       Y
                                             Conference Calls are funded by a grant
                                             from The Hilton-Perkins Foundation.r
          Colorations IncredibleFoam
          Dough Sampler Pack $14.99 NEW PUBLICATIONS                             P
          www.discountschoolsupply.com                                           a
                                            Assessing Communication and
                                            Learning in Young Children who are   r
                                            Deafblind or Who Have Multiple e
            Sign-A-Lot                                                           n
            The Big Surprise                                                     t
            This award winning DVD         Ress_ab.cfm
            inspires participation while   e                                     N
                                           aDeafblindness: Educational Service   e
            teaching American Sign
                                           dGuidelines Best practice guide designed
            Language Vocabulary to
            hearing children (ages 3-10).   to
                                           B help states, districts, schools and
                                            practitioners in supporting students who
 Art Website: www.artbeyondsight.org       o                                     r
                                           oare deafblind. $25.00 at
                                            www.perkins.org/publications         k
             CONFERENCES                   sTransition, NCDB publication, transition
CHARGE Syndrome Conference                 !planning for teens with deaf-blindness.
July 24-26, 2009, Hilton Chicago            http://nationaldb.org/documents/product
www.chargesyndrome.org                     is/transition01-09.pdf                s
                                           sPositive Behavioral Supports andl
NFADB & NAPVI 2009 Conference                                                    e
                                            Social Relationships By Tim Hartshorne
“Families Connecting with Families”        a                                     t
Costa Mesa, California                                                           t
July 17-19, 2009, www.nfadb.org            n                                     e
                                           aChildren with Disabilities:          r
HKNC Summer Seminar for High School        tUnderstanding Sibling Issues
Students Exploring Future Vocational and   iwww.athealth.com/Consumer/disorders/dP
Educational Opportunities, July 6-17, 2009 oisabsibling.html                     a
Contact:Dora Carney (516) 944-8900 x258                                          g
                                           nCD Rom on CHARGE Syndrome
www.hknc.org/VocRehabHSSUMMERPROG.htm                                            e
                                           aUpdated CD Rom emphasizes the effect of
                                           lintervention strategies on problem areas.
DeafNation Expo Secaucus 09/26/09                                                6
                    New CD Rom on CHARG h
                             New York Parent Network Membership Form
                             Name: _________________________________________
                             Address: _______________________________________
    NYPN                     Phone: _________________ Cell: ___________________
Board of Directors:          Email: _________________________________________
President                    Deaf-blind Family Member: ________________________
Sonia Hartmann
                             DOB: ___________
(315) 637-6503
soniamh@verizon.net           Check One Below:
Family Specialist             ! Family Membership ($10 Annually)
Clara Berg                    ! Professional Membership ($15 Annually)
(718) 997-4855                ! Family Scholarship
Clara.Berg@qc.cuny.edu        ! Lifetime Membership ($100)
Fundraising Committee         ! Donation $________ Your Donation is Tax Deductible
Bill Grimes                  How did you hear about NYPN?
ouija60@comcast.net         _______________________________________________
Jose Canadas
                            Mail to NYPN c/o Barbara Loughran at address below.
Fundraising &
Newsletter Editor                    NYPN works in collaboration with NYDBC.
Evelyn Popper                                         Queens College
Epopper222@aol.com                                    Klapper Hall – Room 324
                                                      Mail to: Powdermaker 200
Secretary                                             6530 Kissena Blvd.
Barbara Loughran                                      Flushing, NY 11367
102 Arleigh Drive
Albertson, NY 11507                        www.qc.cuny.edu/pdfs/nydbc.pdf
(516) 621-2934
                            New York Parent Network
Mary Conlon
                            c/o Barbara Loughran
27 Florence Drive
                            102 Arleigh Drive
Manorville, NY 11949
                            Albertson, NY 11507
Brent Bailer
Professional Consultant
Kathy McNulty

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