hawaiʻi-pacific deaf blind project€¦ · spring-summer 2015 celebrating treasures in the deep...
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Spring-Summer 2015
Celebrating Treasures in the Deep Blue Sea
Talofa Lava! Aloha! Iakwe! Len Wo! Kaselel! Raanannim! Hafa Adai! Alii!
Read onward and discover some of the many treasures in our shared deep blue sea. This issue of the newsletter focuses on important people, places and events related to Deaf-Blind and Deaf people, their families, and the people who work with them. In the section called Celebrating Treasures, you will meet some amazing Deaf and Deaf-Blind young adults who are finding success in their voyage through life. In Techie Treasures, you will find some wonderful resources. Another section you will see is New Gems in Hawai`i where you will learn information about new programs and get updated on others. Take a look at What’s up in the Pacific Basin for the latest news from CNMI and American Samoa. Plus, there are other great reads that includes Language Rich Environments for Deaf and Deaf-Blind Students, A Mother’s Story: Our Journey to Microtia Reconstruction and from our Liaison Corner learn How to Make Kool-Aid Playdough with a No Cook Recipe. How cool is that?
We hope this newsletter finds you in good health and that these articles will serve as an inspiration for you and your families. Enjoy the treasure hunt.
Hands are Waving!!! Congratulations Shayleen!
Congratulations to our project Mentor Shayleen Siquig, the first Native Hawaiian, Deaf-Blind person to graduate from Gallaudet University in May, 2015. We are proud of you! Check out the letter Shayleen received from Hawaiʻi United States Senator, Brian Schatz on the next page.
Just landed in Honolulu from left to right: Davina Johnston, April Bottoms (former Deaf WorldTeachVolunteer), Tiffany Narciso, Suzy Long, Rachel Steingeiser & Gary Sidanski
Kommol Tata...Until We Meet Again
Thank you Deaf WorldTeach volunteers and teachers for stimulating the minds, touching the hearts and inspiring the success of the Marshallese Deaf & Deaf-Blind children and youth and their families.
Celebrating Treasures
Hawaiʻi-Pacific Deaf Blind Project
One Pacific Islander’s Perspective: Eulalia’s Journey into Deaf Cultureby Jan Fried
On May 5, 2015, a panel discussion for the Deaf Asian/Pacific Islanders was held at Kapi‘olani Community College. The following men and women were on the panel: Kian Guan Au, born and raised in Singapore; Kayo Lambrecht, originally from Japan; Jonah Carino, born in Guam and grew up in California and Hawai‘i; Gisella Tomita, from Hawai‘i, who also spent part of her childhood in Maryland; Mary Lou Guzman Beal, born in the Philippines and raised in Hawai‘i; Huy Nguyen from Vietnam, who grew up in Hawai‘i; and Eulalia Pelep, born and raised in Pohnpei. Responses to questions revealed the varied backgrounds and experiences of the panelists. Some had attended a Deaf school, while others went to mainstream schools, learning in classrooms with hearing students. A few could understand the original language of their families and neighbors, then learned ASL later. One panelist learned ASL as her first language.
The panelists shared stories about their unique identities—culturally as Deaf people and their ethnic identity as an Asian or Pacific Islander. Although all the panelists spoke, this article focuses particularly on some of Eulalia’s remarks. Asked about her background and the languages she used while growing up, Eulalia replied that as a small child she could hear and learned the Pohnpeian language. However, she got very sick, was hospitalized, and lost her hearing. She said she was teased for being Deaf but decided to ignore the comments. She accepted herself as a Deaf person, with the challenge of learning to sign. Eulalia was asked if it was harder for her to be part of her Pacific Island culture or Deaf Culture. She replied that she came from a family with strong Pohnpeian and Chuukese backgrounds. She learned a lot about these cultures from her family members while she was growing up. Only later did she learn from her teachers ASL and about Deaf Culture.One question focused on oppression and whether the panel members ever felt oppressed because they were Deaf or
because of their ethnic identity. Eulalia said that her mother was very protective of her because she was deaf and didn’t
want her to go out alone. That embarrassed Eulalia. Even though she understood her mom’s speech and her family members’ gestures, Eulalia felt frustrated and isolated at times. She wanted to learn more, socialize, and communicate with her friends. There weren’t many other Deaf people on the island, so she would spend time with her sister or one Deaf friend. That situation changed when she moved to Hawai‘i.
The audience appreciated the comments from Eulalia and the other panelists. The evening was very informative and gave us a peek into each of their personal journeys.
Jan Fried is a Professor and Coordinator of the American Sign Language/English Interpreter
Education at the University of Hawai'i-Kapi'olani Community College. She can be reached at: [email protected] and 808-734-9891.
Shayleen is pictured with her mom and representatives from Senator Brian Schatzʻs office.
Shayleen’s letter from Hawaiʻi United States Senator Brian Schatz.
Mourning One of Our Beloved Treasures…
We mourn the passing of our dear friend and Related Services Assistant (RSA), Francesca Tinmad. She was a special person who embodied the spirit of the RSAs, and devoted herself to helping children with disabilities and their families in Yap. She was passionate about learning. Francesca received her RSA certificate in the 2000 RSA cohort in Pohnpei, and was an RSA in the special education department in Yap from 2000 through 2015. Before 2000, she was a teacher at St. Mary's School, and was a teacher in special education, Yap State. She was very creative and made many devices for "her" children using local materials. Francesca's contribution to the RSA family was important, and she will be dearly missed.
A Rising Star from Guam: Myra Aguon!Her Dream is coming true!
by Judy Coryell
Myra Aguon is a Sophomore at Gallaudet University in Washington, DC—a LONG way from her home in Guam! But she’s exactly where she wants to be! Myra says that she’s had a dream of going to Gallaudet since she was in 8th grade—and her dream came true! Myra graduated from Guam’s JFK High School in 2010 and came to Gallaudet in Fall 2013. She is excelling in her academic courses and made the Dean’s list for her GPA of 3.8 in the Fall. She is also experiencing adventures outside of her coursework. Last Spring, in her first year at Gallaudet, Myra was honored to be selected to go the Costa Rica for nine days
with Gallaudet’s First Year Study Tour. After completing her B.A. degree in Elementary Education, Myra wants to get a M.A. degree in Deaf Education and then return home to Guam to teach Deaf students at the elementary or secondary level as well as teach ASL part time at Guam Community College. We wish Myra continued success at Gallaudet and pursuing her dreams for a bright future!
Baby Pelu and basket, made out of recycled materials and coconut fronds by Francesca
Finding Keys to Unlock Hidden Treasures for Deaf and Deaf-blind Children
by Dr. Judy Coryell, Director of Gallaudet University Outreach for Hawai‘i and the Pacific
(Note: This article is focused mainly on deaf and deaf-blind children who use a visual language as a first language, such as sign language, rather than a spoken language, such as English or Marshallese.)
Think about a deaf child who is two years old. How many words or signs do they know? A three-year old deaf child? A four-year old deaf child? The following are some MYTHS about language development in deaf children. Each myths is followed by the FACTS.
Myth: Language development in deaf children always lags behind their hearing sisters, brothers, cousins, friends.
Fact: Deaf children CAN have language and thinking skills to be kindergarten-ready. With a language-rich visual environment, deaf children can develop language at the same pace as their hearing peers: 200-300 words/signs by age two, 900-1000 words by age three, and 1,500+ words words/signs by age four!
Deaf and deaf-blind children need to be in a language-rich visual environment to develop language fluency and to reach their full potential. They need a strong language foundation (such as sign language) that they develop when they are young in order to be successful in school, at home, in the community, and in a job. [Note that the term deaf-
blind children as used here refers to deaf children with low vision/blind who have the potential to learn though and become fluent users of ASL] Finding keys to unlock deaf children’s potential: Expose your deaf or deaf-blind child to sign language when they are very young, learn sign language as a family, make sure they go to school when they are young and that their teachers are fluent in sign language, become friends with deaf adults who use sign language. Surround your deaf or deaf-blind child with a language-rich environment, which can include sign language and spoken language, as long as the child is making significant progress towards language fluency.
Myth: Children who are born deaf have a severe communication/language disability. Fact: The majority of deaf and deaf-blind children in the Pacific and many parts of the US and the world are deprived of full access to a language. Without full access to language that starts at a very early age, deaf and deaf-blind children cannot develop full language fluency in signed or spoken language. Deaf and deaf-blind children who cannot benefit from a spoken language to develop language fluency need to be surrounded by a language-rich sign language environment at home, at school, and in the community. Finding keys to unlock deaf children’s potential: Don’t be satisfied with severely limited language abilities. End language deprivation. Actively work to provide a fully accessible visual language for deaf and deaf-blind children from the time they are identified as being deaf or deaf-blind.
Myth: For parents, family members, and teachers, learning sign language is hard.
Fact: Many parents, family members, and teachers can become fluent users of sign language. This will be a big help for normal language development of their deaf or deaf-blind children.
Finding keys to unlock deaf children’s potential: Parents and teachers can attend sign language classes, learn
from deaf sign language users in the community, become friends with deaf adults.
Myth: It’s the law: deaf and deaf-blind children MUST be mainstreamed with hearing peers in a regular school and a regular classroom.
Fact: It’s the law: deaf and deaf-blind children are allowed “Special Considerations” in the Individuals with Disability Education Act (IDEA) that create a language-rich
environment for deaf and deaf-blind children. From IDEA 2004 Regulations Part 300, Subpart B, 300.116 (d) In selecting the LRE, consideration is given to any potential harmful effect on the child or on the quality of services that he or she needs. The school/IEP Team must consider the following situations:
★ Language and communication needs,★ Opportunities for direct communications with peers and professional personnel in the child's language and communication mode★ Direct instruction in the child's language and communication mode(See IDEA 2004 Regulations Part 300, Subpart B, 300.116 ) WHAT KEYS ARE YOU USING TO UNLOCK DEAF CHILDREN’S POTENTIAL??Is your state or jurisdiction educating deaf and deaf-blind children in a language rich environment? Are teachers fluent in sign language working with deaf and deaf-blind children? Are they skilled in teaching deaf and deaf-blind children using sign language?
Are there opportunities for parents, families, and teachers to learn sign language and become fluent in sign language? Are deaf children able to sign 200-300 words/signs by age two, 900-1000 by age three, and 1,500+ words/signs by age four? Can they read or write like their hearing peers when they are in 1st grade? 4th grade? 9th grade?
All of these questions are critically important for providing your deaf or deaf-blind child the opportunity to become fluent communicators, excel in school, have a successful job, and have a full life.
Finding keys to unlock deaf children’s potential: Don’t wait!! Deaf and deaf-blind children need to be surrounded by language they can fully understand from the time they are very young and throughout school.
For more information on how to create language-rich environments for deaf and deaf-blind children, contact Dr. Judy Coryell, director of Gallaudet University Outreach for Hawai‘i & the Pacific ([email protected]) or Mellanie Lee, director of the Hawai`i & Pacific Deaf-Blind Project ([email protected]) Like us on Facebook: Majuro Deaf Education Center, Deaf WorldTeach, Hawai’i & Pacific Deaf-blind Project. Visit our websites: Deaf WorldTeach (deafworldteach.org) and Hawai’i & Pacific Deaf-Blind Project (http://www.pdb.hawaii.edu/).
Liaison Treasure Chest
How to Make Kool-Aid Playdough – No Cook Recipe by Diane Artero, Guam Deaf-Blind Liaison
I want to share a great recipe on how to make playdough [not “Play-Doh”] using Kool-Aid. It’s very easy to make, and there’s no cooking involved. This playdough involves all the different senses: touch, smell, sight, hearing, and even taste (although the taste it is not really very good). All ingredients in this playdough are edible. This playdough design allows for students with visual and hearing disabilities to experience the activity through their other senses.
Ingredients for Kool-Aid Playdough● 1-2 packets Kool-Aid● 1 cup flour● 1/2 cup salt● 2 tablespoons cream of tartar● 1 tablespoon vegetable oil● 1 cup boiling water
Put all dry ingredients (salt, flour, cream of tartar, Kool-Aid) in a large bowl and mix well. Add the oil and boiling water to the mixture and mix this with a large spoon until it becomes very firm. The mix should be cool enough to handle after a few minutes of stirring.
Lay out some wax paper and flour for the last step. Roll the mix in the flour. Add more flour if the mix feels too sticky. The Kool-Aid makes the playdough recipe smell really good. Since the recipe contains salt, be sure to wash your hands after mixing, and use some lotion to prevent dryness. The mix will last for a long time if refrigerated in a plastic bag.
This playdough involved my student, actively and enthusiastically. Making playdough is one of the most motivating lesson to intrigue the interest of all students. My student’s peers were so interested in how she could read and write despite her blindness. I took the opportunity to present a lesson that involved her classmates while at the same time allowing my student to practice the contractions she had learned prior.
The whole idea to this lesson was to have her read the recipe (written in contracted Braille) for making play-dough while each student group followed along making their own batch based on the directions read aloud by my student.
This activity lent itself to future lessons in opening packages, pouring, measuring, and mixing. The students were engaged and on task throughout the entire activity. They were especially impressed with their classmate’s ability to read Braille and demonstrate making play-dough.
I believe the best lessons are the lessons that are hands-on and allow students immediate feedback on the outcome or production of their skills. The play-dough activity was a
wonderful motivator for both my student and her classmates. There are so many other skills unintentionally incorporated into this lesson–– social skills, manners, turn taking, logical thinking, mathematics, and even science.
For a ton of great playdough recipes, check out playdoughrecipe.org and playdoughrecipe.com
CNMI ASL Newsby Angie Mister
The community of the College of the Northern Mariana Islands (CNMI) has taken strides to teach important issues and increase the knowledge and use of American Sign Language (ASL) within the community. The purpose of these efforts is to not only educate the youth and share ASL with the community, but to also establish and engage basic service providers with ASL, assuring they have the skills to communicate effectively with persons who are deaf and hard of hearing.
Various organizations and community members are committed to teaching others about deaf culture and ASL. Educational resources and family support is also a key component as it is important to know that you are not alone after a child’s diagnosis of hearing loss.
Joeten-Kiyu Public Library hosted a free ASL class entitled “Resources for Children and Teenagers in ASL”. Patrick Lynch of the Jehovah’s Witnesses and parent of a deaf child shared video presentations (in ASL) with the general public on topics such as “Be Kind and Share,” (http://blog.dynamiclanguage.com/hs-fs/hub/353525/file-2566192460-jpg/asl.jpg?t=1430178664705&width=343). “Please and Thank You,” “Be Social Network Smart” and “What’s a Real Friend?”
The first event was such a success that a second program was offered. Participants again gathered together to practice using ASL while also watching a second video presentation. The second series was entitled “Learn how to "Beat a Bully without Using Your Fists". The video presentation was presented in ASL, with deaf children and teenagers as the intended audience. All of the sign language videos shared with the audience came from the website www.jw.org, in the section entitled "Watch Sign-Language Videos".
What’s Up at the Pacific Basin?
American Samoa UCEDDTafaimamao Tua-Tupuola The Federal Communication Commission (FCC) Disability Advisory Council held its first meeting on March 17, 2015, at the FCC Headquarters in Washington DC. Commissioner O’Reilly provided welcoming remarks to thank members of the group for their service and noting that their work “can be an amazing equalizer in today’s society.”
The Commissioner highlighted the need for the Disability Advisory Council (DAC) to review issues within the context of the entire communications sphere; hence the need to consider the ultimate cost to the American consumer of any recommendations.
Members of the DAC are required to become familiar with and understand
the Commission’s past work and rules, and limitations on its jurisdiction. The Commissioner urged members not to underestimate the benefits to users of incremental improvements.
Four subcommittees were formed: (1) Relay/Equipment Distribution; (2) Communications; (3) Video Programming; and (4) Emergency Communications. Each of these committees was tasked to identify three top priorities in the group.
Tafaimamao Tua-Tupuola was nominated by the Association of University Centers on Disabilities and appointed by the FCC-DAC as a voting member to serve a term of two years. She is serving on the Emergency Communications subcommittee to do the following: (a) identify gaps in evaluating existing recommendations from similar committees and status and
needs of new or proposed standards; (b) accessibility of new generation 911, N-11 number; and (c) accessibility issues regarding emergency alerting, wireless emergency alerts.
To learn more about the American Samoa UCEDD see: http://www.amsamoa.edu/specialprograms/ucedd.html
Northern Marianas College - University Center for Excellence in Developmental Disabilities (UCEDD)
The UCEDD proudly funded 2 ASL trainings for service providers. Over 40 participants, including health care providers, a vocational rehabilitation counselor, teachers, public service providers, and interested community members committed their time to complete the basic American Sign Language class.
The course was taught by Cassandra Randolph, B.A., a NAD IV certified interpreter. Participants learned the mechanics and parameters of signs, were able to sign simple sentences, learn work-related vocabulary, have a basic understanding of deaf culture, and be able to identify local and
federal resources to support persons who are deaf and hard of hearing.
In May, the Early Hearing Detection and Intervention (EHDI) Program, in collaboration with the Public
System Special Education Program, hosted their annual deaf and hard-of-hearing family event. This year’s event again provided a network opportunity for families with children who are deaf or hard of hearing and a focus on self advocacy.
The team discussed and shared various tools within the Guide to Access Planning Program (http://www.phonakpro.com/us/b2b/en/pediatric/GAP.html available on the Phonak website). The team introduced the Planning Program, providing important information on how to effectively advocate and teach
children to be responsible for their communication access supports and, in particular, hearing assistance technologies.
In addition to the Guide to Access Planning Program, the team blended activities and worksheets from the “I am Determined” Project, a state directed project funded by the Virginia Department of Education. This project helps youth, especially those with disabilities, take measures of control in their lives, identifying their strengths, interests, needs, and preferences (http://www.imdetermined.org/). To find out more about these programs click the links to explore the website materials.
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Assistive Technology Resource Centers of Hawaii (ATRC) is a 501(c) 3 nonprofit, resource center that provides access to assistive technology for people with disabilities of all ages, enabling independence and participation in every aspect of community life, including employment and education.
ATRC offers free programs to the community. These programs are geared to education of individuals with disabilities, friends and family members, professionals, institutions, and anyone else interested in assistive technology.
As a resource center, the mission of ATRC is to link persons with technology. ATRC will utilize demonstrations, outreach, technical assistance, public awareness, device loans and trials, financial loans, and other programs to meet that mission. ATRC’s unbiased opinion regarding assistive technology provides the community with a broader overview of what is available and how it works.
Through the free National Deaf-Blind Equipment Distribution Program called iCanConnect, ATRC has recently committed to providing a wide range of hardware, software applications, and training to suit the needs of people
who have vision and hearing loss. Through this program from the Federal Communication Commission, ATRC is making it easier for everyone to stay connected through technology.
For more information on ATRC, go to http://www.atrc.org or call (808) 532-7114.
Therese Willkomm’s Golden Nuggets for Assistive Technology…by Eric Arveson
Therese Willkomm, the "MacGyver of Assistive Technology,” came to the Pagoda Hotel on February 24, 2015. The 148 people who signed up for her two-day workshop were definitely not disappointed. Therese Willkomm was exciting, entertaining, innovative, and creative. She tickled our brains and kept us laughing for two days!
Here are examples of some of her amazing, functional, and low cost techie solutions:
1. An iPad stand made with industrial tubing, used as a document reader.
2. An iPad with a lens attached, and used as a microscope that can be projected as a large image
3. A homemade text reader made with recycled plastic sign and a free app.
Therese’s goal is to keep the cost of her devices under $5.00. Interested in making some of these clever and cheap techie adaptations? You can find out more in Therese’s two books on creating your own assistive tech solutions, Assistive Technology Solutions in Minutes: Book I and Book II. The second book comes with a CD containing 115 “How-to” video clips. Therese also has over 750 videos on the internet (http://www.iod.unh.edu/PriorityAreas/assistivetechnology/default.aspx) that demonstrate how anyone can create their own assistive tech solutions. Many people who attended Therese Willkomm’s presentation requested that she return to Hawai‘i and provide a Make-It & Take-It day so they can create their own techie solutions. Consequently, Therese will have a Make-It & Take-It day in Kona on
Techie Treasures
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iCanConnect: Making Waves in Hawai‘i
Ramon, who is deaf and legally blind, is carrying his iPad at the library near his school. His smile will get even brighter when he receives his new braille display this year, free, through a program called
iCanConnect.
iCanConnect is the National Deaf-Blind Equipment Distribution Program, and provides free access-to-distance communication technologies to people with significant combined hearing and vision loss who meet federal income guidelines.
You can find out more, and request an application for Hawai‘i residents, by contacting Cathy Kirscher, at the
Helen Keller National Center, or on the website: www.icanconnect.org. The following is Cathy's contact information:
Cathy Kirscher, MSHelen Keller National Center9939 Hibert St #108San Diego, CA 92131
Telephones858-578-1600 (V/TTY)858- 578-3800 (FAX)858-397-5522 (VP)
Websitewww.hknc.org
Tuesday, January 12, 2016, and on O‘ahu on Thursday, January 14, 2016. Workshop participants will make ten practical techie items they can keep and use with students and adults with disabilities. Stay tuned for more information to be shared on the Hawai`i & Pacific Deaf-Blind Project's FaceBook page and Listserv. If you are currently not on our Listserv, please email Jennifer Tarnay at [email protected]. Eric Arveson is the Assistive Technology Manager at Easter Seals Hawai‘i. He can be contacted at [email protected], or 808-523-5547.
Therese WillKomm’s workshop was sponsored by Hawai`i & Pacific Deaf-Blind Project, Department of Health Early Intervention Program, Assistive Technology Access Centers of Hawaii and Easter Seals Hawai‘i.
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Photos from across the Pacific
Flourishing in Mā‘iliby Marisa Rayos, Community Care WorkerThe Learning Disabilities Association of HawaiiHawai‘i’s Parent Training and Information Center 2015 has been an eventful year for the Learning Disabilities Association of Hawaii School Readiness Project. We relocated our Wai‘anae office to one of two state-of-the-art buildings at the brand new Kamehameha Schools Community Learning Center at Mā‘ili. This move has had an amazing effect on our work as it has allowed families easier access to our services.
Our number of walk-in families has increased dramatically allowing the School Readiness Project to provide more developmental, social-emotional, hearing, and vision screenings for keiki on the Wai‘anae coast. Our previous 2nd story office was pretty run down, in a questionable neighborhood and had no elevator. In comparison, being at the Community Learning Center at Mā‘ili is like heaven. Our early childhood screenings are integral for professionals with whom we work, as the screenings provide preliminary data on areas of concern in children served. Follow-up care from our case managers ensures that keiki receive the early intervention services, therapies, and medical attention they need to resolve concerns prior to their entering kindergarten. Our ultimate goal is that all children are successful in school. This starts early!
Evidence that early childhood screenings are critical is found in stories like that of one little girl we served. A mom and her daughter came in to our office after hearing through her other daughter’s school about the free developmental screening services we offer. As we completed the child’s screenings, the Otoacoustic Emissions test revealed an area of concern. Alerted, the mom immediately scheduled an appointment with her daughter’s pediatrician; an action our School Readiness Project case managers encourage for all children as part of our goal to help families establish Medical Homes.
The following day, the mom returned to our office and thanked us for screening her daughter. She told us the little girl’s pediatrician had found that a significant earwax buildup had been impacting both of the girl’s eardrums. A little flushing later… problem solved! Case closed! Now, imagine if months or years passed before this treatment need was discovered. This little girl would have endured increasing pain and a far
greater chance of prolonged hearing difficulties. Being part of the Community Learning Center at Mā‘ili paves the way for families to access our services more comfortably, and to come back to share their stories. We are thankful for our new home and new neighboring service
agencies. This collaborative setting is a new family focused on the needs of small children –a winning formula in which families can flourish.
Treasures in Hawai‘i
The School Readiness Project Mobile Screening Unit
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Best Buddies Hawai`i Walks the Talkby Stephen Potts, Area Director, Best Buddies Hawai‘i
Full Community Inclusion for people with an Intellectual or Developmental Disability is an idea that many of us can ‘talk the talk’ about, but is talking about it really the extent of our best efforts? More than 100 high school and middle school students on O‘ahu, their families, friends, teachers, colleagues, and more, decided that ‘walking the talk’ was a much more appropriate way to show the community what Inclusion is all about. Saturday, May 16, 2015, was a gorgeous day to celebrate Inclusion at Kapolei High School for the 2nd Annual Best Buddies Hawai‘i Friendship Walk. Walkers of all ages and reasons for walking enthusiastically banded together as one large inclusive group to complete the first lap around the track in solidarity before they were released to walk at their own pace and distance. Special guests and performers included Emma Wo, the reigning Miss Hawai‘i USA, ukulele virtuoso Aidan James, the Hawai`i Youth Chorus, and Honolulu Broadway Babies stars Julius Mina, Nick La‘a, and Kristi Meechan. To date, the Friendship Walk has raised more than $14,000 to support programs at the following nine (soon to be 10) high and middle schools on O‘ahu: Nanakuli Intermediate and High; Kapolei Middle and High; Aiea High; Pearl City High; Kailua Intermediate;
Leilehua High; Kaimuki High; and Stevenson Middle (to begin 2015-2016 school year).
Donations are still being accepted at www.bestbuddieshawaii.org/fw or by calling Stephen Potts at 808-545-3025. Please note that Best Buddies is a 501(c)(3) nonprofit organization; your contributions are tax deductible, and 81% of all revenue goes directly to Best Buddies programs for people with an Intellectual or Developmental Disability, while only 19% is spent on
administration and fundraising. Be sure to mark your calendars for Saturday, October 17, 2015, from 1:00-5:00pm and make your plans to join us for the 4th Annual Best Buddies Hawai`i Friendship Jam at Jimmy Buffett’s in Waikiki. Four hours of live music, entertainment, silent auction, food, and more! Seats
will be very limited, so watch for tickets to go on sale by visiting http://www.bestbuddieshawaii.org/site/c.mjJUJ3MOIwE/b.4412013/k.BD07/Home.htm often.
Best Buddies Mission Statement
“Best Buddies® is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual or developmental disabilities.” Best Buddies Hawai‘i is a State Affiliate Chapter of Best Buddies International, Inc.
Stephen Potts can be reached by email at [email protected] or at work (808) 545-3025. Cell (808) 426-6431.
Operation SPINby Stella Chang, Family Specialist for HPDB
Congratulations to the Special Education Information Network: Hawaii (SPIN) for another successful conference at the Campus Center of UH on May 2, 2015. This year’s theme “Operation SPIN” offered 16 workshops on various topics, including Health Insurance, Transition, Assistive Technology, Advocacy. The Hawai`i and Pacific Deaf-Blind Project were among the 66 network organizations at the exhibition. We were able
to share information and resources about our project. Through the annual SPIN conference, families of special needs children learned and explored topics of their interests. They also had the opportunity to gain information and resources from the different agencies that were available for service and network with other parents and professionals. Included is a photo of my daughter Kai Hsin networking with her new friend Emma. They had a good time at the conference! We value what SPIN has done and would like to give a big Mahalo to the staff and volunteers for their hard work!
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From the Big Island, Hawai`i….The Partners in Development Foundation Launches theNew “Tūtū and Me Traveling Preschool” Home Visiting
Programby Lani Bowman
“Tūtū and Me Traveling Preschool,” is a mobile early childhood program with the Partners in Development Foundation. In April 2015, the Foundation launched a new Home Visiting Program in the rural districts of Ka‘ū and Kohala on the Big Island of Hawai‘i. A cornerstone of the Home Visiting program is Protective Factors––a model used by the U.S. Department of Health and Human Services in their Making Meaningful Connections: Prevention Resource Guide.
The Protective Factors model builds on family strengths, reduces risk factors for child abuse and neglect, and promotes social and emotional well-being. These benefits have positive impacts on a child’s ability to succeed in relationships, in school, and in future employment.
The Home Visiting Program is a family strengthening model, which targets the caregiver first. The model was developed in response to the need for quality early learning opportunities and caregiver support in these rural communities.
The Home Visiting Program supports caregivers who are raising children from birth to age five and who may not have access to early learning opportunities. The Program provides enjoyable educational interactions with families in the comfort and security of their own homes.
The curriculum is based on resources developed by the “Tūtū and Me Traveling Preschool.” Families participate in
a program that lasts from 12 to 15 weeks. The resource is designed to support parents and caregivers in their role of first teachers. Home visits are conducted weekly or bi-monthly, and cover subjects such as Playful Parenting, Emotional Development, and Challenging Behaviors.
Educational materials, books, and toys are shared with caregivers who, in turn, use the resources, new skills, and teaching strategies with their children. Home visits are 1½ hours, and are provided without charge. The Home Visiting Program partners with schools, programs, and community agencies to strengthen the network of support services available to families.
Lani Bowman, a lifelong Kohala resident, is North Kohala’s Home Visitor. As the former Director of a community based preschool in North Kohala, and an active member of local schools and community groups, Lani understands the importance of early education and caregiver support: “I am so excited to be able to help empower caregivers in their crucial role as keiki’s first and foremost teacher. I love giving back to
people in the community I was raised in!”
Linda Bong, a long-time resident of Hawai‘i Island, lives in the Ka‘ū District and is Ka‘ū’s Home Visitor. Linda recently earned her Master of Social Work degree and is enthusiastic about her new position as a home visitor for caregivers in this rural community: “Providing caregivers with support, encouragement, parent education, educational resources and practical resources in the comfort of their own home is a vital component of this program. I am honored to be part of the networking effort to transform our communities.”
For more information about Tūtū and Me and the Partners in Development Foundation, go to http://pidf.org, or call: (808) 595-2752.
Our Ship is Sailing Again!
June 8 saw the relaunch of the American Sign Language/English Interpreter Education program at Kapi'olani Community College after being in "dry dock" while undergoing some renovations. The new cohort of students are on board for the accelerated and intensive version of the program, which is now 3 semesters instead of 5. If you are interested in more information about
the program or how to apply for next year's cohort, please contact Jan Fried, program coordinator, at [email protected] or 808.734.9891. Take a look at our Facebook page, too! https://www.facebook.com/pages/Kapiolani-Community-College-ASLEnglish-Interpreter-Education-Program/827772557285129?fref=ts. A career in interpreting can be on your horizon!
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A Mother’s Story: Our Journey to Microtia Reconstruction by Allison Silva
When our first child, Mya, was born with Microtia and Atresia, a permanent unilateral (in one ear) hearing loss, we were shocked and heartbroken. While struggling with the challenges of being new parents, we also struggled to understand this diagnoses and the impact on our lives. Mya's first months of life included multiple audiology exams, which confirmed she had both Microtia (a deformity of the outer ear) and Atresia (hearing loss due to narrowing of the ear canal). Audiologists explained that she had a moderate-to-severe (56-70 decibel) hearing loss in her microtic ear. It was an extremely emotional period as we tried to understand the full impact of Mya's hearing loss and what options we had to help her overcome her challenge.
We were immediately enrolled in the Easter Seals Early Intervention Program, which provides free services from ages zero to three––the most critical stage for brain and speech development. Easter Seals educated us on the impact of hearing loss on brain development, and also the psychological and educational implications. Audiologists educated us on available options for hearing aid technology to support Mya’s listening and spoken language skills from infancy to adulthood.
When Mya was 11 months old, we made the difficult decision to purchase a BAHA so'band (bone-‐anchored hearing aid––a type of hearing aid based on bone conduc9on). Despite not receiving any financial support from our insurance company, we felt strongly that with the BAHA, Mya would be most successful in developing age-appropriate skills in language and cognition.
Throughout the first 18 months of Mya’s life, we received speech-therapy services and developmental assessments from Easter Seals. We also attended baby-sign-language classes in the community. At that time, our audiologist invited us to a meeting of a support group hosted by the "Wish to Hear Foundation." This foundation, created by parents of a child with Microtia and Atresia, was a gathering of families whose children had undergone surgical repairs for Microtia and Atresia. The children in that group were aged six through ten and were playing games, chatting, and acting as all other children their age do. Each child proudly displayed their reconstructed ear(s) and generously allowed guests to examine them close up. Some had undergone rib-graft Microtia Reconstruction and some had undergone Medpor reconstruction (use of a synthe9c framework and the body’s own 9ssue to create an ear).
Parents told stories of their personal journeys, their battles with insurance companies, and their difficult decision on what option was best for their child. I walked away with renewed motivation and from then on applied myself to researching all ramifications of hearing loss and the available surgical and non-surgical options, regardless of location, cost, or foreseen limitation.
The initial surgical recommendation for Mya was to undergo rib-graft reconstruction at around age 6 by a California-based cosmetic surgeon who came to Hawai‘i every few months to operate on pediatric cleft-palate patients. We made plans to monitor Mya’s growth and scheduled the surgery to take place after a second evaluation in 6 months. Throughout the entire process, we discussed all decisions with Mya and answered her questions. When the time came, Mya was very clear about wanting to pursue Microtia reconstruction, as she had become increasingly self-conscious about her “different” ear. She said that she neither wanted the physical deformity nor the BAHA softband hearing aid to be her eternal burden.We shared this updated plan with Mya's audiologist, who had become our close friend and confidante. She urged me to do further research and to consult with other surgeons, even if they practiced outside of Hawai‘i. We researched this surgical procedure in more detail and learned that rib-graft reconstruction is actually a form of cosmetic surgery. More importantly, we learned that not all surgeons possess equal skills and techniques in this procedure.
“The Ear Community” (www.earcommunity.com) allowed me to access helpful information, read parent testimonies, endless networking opportunities, and also provided a comprehensive list of Microtia surgeons (Medpor and rib-graft, as well as Atresia surgeons) and their contact information. When we decided on the rib-graft method, I
scoured the Facebook group message boards for feedback and specific surgeon recommendations. Parents turned out to be my most valuable source of solid and practical information as they provided advice, photos, tips, and much needed moral support.
Further self-education taught me that this cosmetic surgery could result in a wide range of permanent outcomes. Surgeons who possesses a high level of artistic and surgical skill must be extremely familiar with the contours of the ear and have had extensive
experience molding the shape from the rib to ensure the best result. A poorly performed reconstruction surgery requires starting the entire process again at your own expense. The best available surgeon must be chosen from
Before After
the beginning. I realized that I could not let our choice be limited by obstacles such as location, price, or medical insurance.
The evidence, and my intuition, was overwhelmingly in favor of choosing Dr. Jose Arturo Bonilla of the Microtia Congenital Ear Deformity Institute in San Antonio, Texas (www.microtia.net). While Dr. Bonilla’s medical background is extremely impressive, what made a seemingly difficult decision easy in the end was his stellar reputation among his patients and their families. Through my connections on Facebook and the Ear Community website, each family fervently vouched for Dr. Bonilla’s skills, compassion, and dedication. Parents trust him with their most precious gifts, their children.
One year has passed since Mya’s first surgery with Dr. Bonilla. The struggle––with insurance, financing travel expenses, disruption in our work and school schedules to accommodate a series of three surgeries in less than six months––was long and arduous. And of course the physical and emotional upheaval Mya and our family had to endure was great. However, through tremendous support from our family, friends, physicians, community, and employers, we completed the journey of rib-graft Microtia reconstruction for Mya with resounding success.
Mya has resumed life as normal and shows hardly any evidence of the ordeal that no seven-year-old should ever
experience. Her beaming smile and confident demeanor attest to the resiliency and the unbreakable sprit of a child. While this cosmetic reconstruction does not improve her hearing, it has already had an obvious positive impact to her self-esteem, which she will continue to benefit from for the rest of her life.
In sharing our journey, I encourage you to hold onto hope through the tough moments. Find the strength to overcome the obstacles through empowering yourself with information. Ask tough questions, be proactive, and put forth the effort necessary to discover the best option for your child. The sooner you take action, the better. Studies have repeatedly proven that the golden window of opportunity is in the formative years of zero to three.
Webinar OpportunityAfter having had such a positive experience with Dr. Bonilla, I am honored to to introduce him to the hearing-loss community in Hawai‘i and the Pacific Islands. Dr. Bonilla will present a FREE live webinar on September 19, 2015, as a precursor to his FREE in-person conference on O‘ahu in the summer of 2016. Visit Dr. Bonilla’s website at www.micro9a.net/webinar for his recent La9n America Webinar, as well as for updates on the upcoming U.S. Webinar in September 2015.
If you would like more information, please feel free to contact me at [email protected].
Photos from
across the Pacific
Isle Interpret Services, Descriptions and Benefits
On-site Service Description Benefits
ASLInterpreting
Interpreters go to the assignment location to provide sign language interpreting services.
Ideal for persons who are deaf, hard of hearing, and deaf-blind who use sign language.
Remote Service Description Benefits
ASLVideo Remote Interpreting
(VRI)
Video Remote Interpreters connect to the location by an internet connection using video conferencing software and computer equipment.
Ideal for assignments in highly secure locations (e.g. medical, military, legal), remote locations, and neighbor islands. Isle Interpret uses only linguistic and culturally competent Hawai‘i-based interpreters.
On-site Service On-Site Description Benefits
Real Time Captioning(RTC or CART)
Captioners use court reporting equipment to translate audio information into verbatim text onto a computer screen or projected screen.
Ideal for persons who are hard of hearing but unfamiliar with sign language and for persons with low vision who prefer reading an English verbatim translation.
Remote Service Description Benefits
RemoteReal Time Captioning
(RTC or CART)
Captioners connect to the assignment location by an internet connection using captioning and audio software and computer equipment.
Ideal for persons who are hard of hearing but unfamiliar with sign language and for persons with low vision who prefer reading an English verbatim translation. Ideal for assignments in highly secure locations (e.g. medical, military, legal), remote locations, and neighbor islands.
Isle Interpret is Changing the Face of Communication Access
Isle Interpret is an interpreting and translation agency owned and operated by two seasoned sign language interpreters: Tamar Lani and Susan Kroe-Unabia. Tamar and Susan have used their interpreting skills, business acumen, and technological expertise to change the face of communication access in Hawai‘i.
Isle Interpret is the recipient of the State of Hawai‘i contract for interpreter-referral services for persons who are deaf, hard of hearing, and deaf-blind. The contract covers administrative costs for Isle Interpret to provide interpreter/CART/CAN scheduling services. State coverage of administrative costs enables Isle Interpret to offer lower hourly rates. State, city, county, federal, and private agencies are all beneficiaries of the contract.
On-site Service Description Benefits
Computer Assisted Notetaking
(CAN)
Notetakers use laptops to translate audio information into a summary format on a computer screen or projected screen.
Ideal for persons who are hard of hearing but unfamiliar with sign language and for persons with low vision who prefer reading an English summary translation.
Remote Service Description Benefits
RemoteComputer Assisted
Notetaking(CAN)
Notetakers connect to the assignment location by an internet connection using captioning and audio software and computer equipment.
Ideal for persons who are hard of hearing but unfamiliar with sign language and for persons with low vision who prefer reading an English summary translation. Ideal for assignments in highly secure locations (e.g. medical, military, legal), remote locations, and neighbor islands.
Video Remote Interpreting (VRI) ServicesIsle Interpret is the only agency to provide VRI service in Hawai‘i using Hawai‘i-based interpreters. Providing culturally competent interpreters is a priority. Interpreters who are familiar with Hawai‘i’s languages, ethnic groups, places, place-names, and cultures can usually interpret material about Hawai‘i more quickly and accurately than interpreters who lack this context.
Remote and On-site CART/CAN ServicesPersons using remote CART/CAN services who are viewing streaming text on their computer, look like others in the room. Remote CART/CAN services can provide the benefit of greater independence. Because the remote CART/CAN user does not need the service provider in the room with them, they can sit anywhere they want.
Serving Deaf-Blind UsersIsle Interpret accommodates the needs of persons who are deaf-blind. Users have their own unique needs and preferences. Isle Interpret onsite and remote CART/CAN services allow deaf-blind persons to adjust the font size, font color, and the background color to meet their visual needs.
Protecting PrivacyScheduling and remote services of Isle Interpret are encrypted to ensure the security of information. Isle Interpret is HIPAA (Health Insurance Portability and Accountability Act) compliant. This compliance ensures that Isle Interpret keeps private health information of medical patients secure. Isle Interpret is also FERPA (Family Educational Rights and
Privacy Act) compliant, ensuring that private educational information of students is protected.Serving the PacificWith the use of technology, Isle Interpret is working to expand remote services throughout the Pacific Basin. As availability of internet access improves within the Pacific Basin, access to highly skilled interpreters, real-time captioning, and computer-assisted notetaking can also improve. Isle Interpret is working to develop partnerships throughout the Pacific to make communication access services available for persons who are deaf, hard of hearing, and deaf-blind.
Quality AssuranceIsle Interpret has a comprehensive quality assurance program that monitors experiences of users, addresses concerns promptly, and improves services as needed. The Isle Interpret quality assurance program has produced outstanding results for users. The program has also benefited the professional growth of providers of Isle Interpret communication access services.
Contact Isle Interpret for more information about on-site and remote services.
Email: [email protected]: www.IsleInterpret.comPhone and Text: (808) 445-9125
Toll-free Phone and Fax: 855-475-3874
Dos & Don’ts of Healthy EarsOur ears are very important in helping us gain information and learn more about the world around us. Sometimes, for some people, hearing loss is inevitable, but for many there are DOs and DON'Ts to help our ears stay healthy. Audiologist, Ray Miner, together with GURC and the HPDBC developed a poster that shares these healthy ear tips. Posters have been translated into the several Pacific languages and will be available soon. Stay tuned!!!
The Family Learning Vacation (FLV) is a creative educational program designed to let families with deaf and hard-of-hearing children gain knowledge about deafness, share their experiences with other families, and learn to communicate more fully with each other in a warm, caring atmosphere. The Family Learning Vacation will be held at the Hawaii School for the Deaf and the Blind in Honolulu. Breakfast, lunch, and dinner will be provided on Friday. Breakfast and a light lunch will be served on Saturday. Families from neighbor islands are invited to stay in the dormitory, free of charge. A limited number of airline tickets are available for neighbor island families on a first come first served basis.
This year, our theme is “Open Mind, Open Eyes, Open Hearts.” FLV is open to any family in the State of Hawaii who has a deaf or hard-of-hearing child ages 0-21 regardless of their mode of communication. The two day program includes an Adult Program and a separate Children’s Program for deaf children and their brothers and sisters.
The Adults’ Program may include: Parent Workshops Exposure to American Sign Language Panels of parents of deaf children and young deaf adults Displays from various Hawai’i agencies serving deaf people
The Children’s Program may include: Drama, storytelling, and story-reading Arts and Crafts Fun & Games
If you have any questions, please contact:Roz Kia, Parent Community Liaison, FLV Co-chair(808) 733-4999, [email protected]
Billy Kekua, Teacher, FLV [email protected]
presents:
Family Learning VacationAugust 21 & 22, 2015
See application for cost and registration information.
Registration Deadline: July 20, 2015
The contents of this newsletter were developed under a grant from the U.S. Department of Education #H326T130023. However, these contents do not necessarily represent the policy of The Center on Disability Studies at University of Hawai`i, Manoa, nor the US Department of Education, and you should not assume endorsement by the Federal Government.
Contact Information
Pacific Outreach InitiativeCenter on Disability StudiesUniversity of Hawai‘i at ManoaHenke Hall 100 Wing1800 East-West RoadHonolulu, HI 96822Ph: (808) 956-5861Fax: (808) 956-7878www.pdb.hawaii.edu
Project Staff
Mellanie LeeProject Director/Education Specialist(808)753-0981 [email protected]
Stella ChangFamily Specialist(808) [email protected]
Kelly RobertsPrincipal Investigator(808) [email protected]
Jennifer TarnayProgram Coordinator/Speech-Language Pathologist(808) [email protected]
Mautumua PorotesanoGraphic/Multimedia Designer(808) [email protected]
Check out our ✦FaceBook Hawai`i & Pacific Deaf Blind
Project Page and LIKE us!✦Our website: http://www.pdb.hawaii.edu/
Photos from across
the Pacific
Available to download from
our website!
to our Fabulous Editor
Bob Johnson!We Appreciate all that
YOU do!
Mahalo