In this issue:
- Deaf-Blind Awareness Week
- Family Resources & Supports
- Upcoming Events
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University of South Dakota
Center for Disabilities
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We are fully immersed in summer (finally)! While we know school is out, we want to continue to provide resources and supports to you. Please enjoy this summer issue of the Deaf-Blind Newsletter!
Rose and Brandy
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Deaf-Blind Awareness Week
June 23-29, 2019
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Helen Keller National Center (HKNC) was established through an Act of Congress in 1967, and is the only organization of its kind—providing training and resources exclusively to people age 16 and over who have combined vision and hearing loss. In 1985 President Ronald Reagan signed a Joint Resolution, establishing the last week in June as Deaf-Blind Awareness Week. This coincides with Helen Keller's birthday on June 27th. HKNC spearheads the national awareness campaign each year by developing a theme.This year's theme is
Inspiring Connections
,
which encourages others to reach out to members of the deaf-blind community. Do you know someone in your community with a combined hearing and vision loss? Reaching out to them may prove to be a life changing event for the both of you!
If you don't know someone who is Deaf-Blind, but want to become acquainted with a few individuals and hear their success stories, check out these links:
National Center on Deafblindness (NCDB):
Helen Keller National Center:
Deaf-Blindness is a disability of access to all of the information readily accessible to most people in their home, work, school, and community settings. Those accommodations and strategies typically used by individuals who are Deaf/Hard of Hearing or Blind/Visually Impaired may not be effective for someone who is Deaf-Blind and specialized services are required. In SD, individuals who are Deaf-Blind are typically served by the SD Deaf-Blind Project (birth to 21) and Services to the Blind and Visually Impaired (adults/transition age students). SD also has a host of transition related activities for youth who are Deaf-Blind including Youth Leadership Forum, SD School for the Blind Summer Program and transition week at the SD Rehabilitation Center for the Blind. When additional services are needed, Deaf-Blind adults and transition age students may benefit from attending HKNC headquarters in Sands Point, New York, for on-campus training in assistive technology, vocational services, orientation and mobility, communication and independent living. Funding sources may vary, but typically require the support of the Department of Vocational Rehabilitation.
- Confident Living
- Mental Health
- Interpreting and Haptics (touch signals to convey visual and environmental information)
- Employment/Vocational Rehabilitation
- Orientation and Mobility
HKNC has ten regional offices that provide resources to communities throughout the United States. Our regional representative for Region 8 is Laura Benge. Meet her below!
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Contact Information
Laura Benge
(Regional Representative)
Taryn Hill
(Administrative Assistant)
PO Box 271231
Salt Lake City, UT 84127
Voice: 801-518-9401; Assistant Voice: 206-324-9120
VP: 385-355-8392; Assistant VP: 206-452-7970
If you would like to connect with Laura when she is in SD, contact Rose Moehring.
Rose Moehring, SD DB Program Director
605.357.1437
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South Dakota
Regional Representative
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Laura Benge joined the HKNC team in November of 2017 as the regional representative for Region 8. Laura has a degree in Rehabilitation with an emphasis and COMS certification in Orientation and Mobility from Stephen F. Austin State University. She also has a minor in Spanish studies.
Prior to assuming her position with HKNC, Laura worked as Utah’s DeafBlind Specialist. In that position she provided case-management services, coordinated Utah’s DeafBlind Support Service Provider Program, worked closely with vocational rehabilitation counselors, and administered services for the National Deaf-Blind Equipment Distribution Program. The Region 8 office is now located in Salt Lake City, Utah, where Laura resides.
Laura provides consultation services for adults and transition age youth who are Deaf-Blind. She comes to South Dakota 1-2 times per year to meet with professionals and consumers.
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NCDB is funded through the US Department of Education, Office of Special Education Program (OSEP). The main focus of the organization is to improve the quality of life for children who are Deaf-Blind and their families through 5 major initiatives:
- Early Identification and Intervention
- Assessment, Planning, and Instruction
- Transition
- Interveners and Qualified Personnel
- Family Engagement
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Two great Family to Family Support Opportunities Include:
- Building Family to Family Communities involves a monthly 90 minute call/video conference providing opportunities for families to network with each other families of children who are Deaf-Blind. If interested contact Carol Darrah with the Georgia Sensory Assistance Project: cdarrah@uga.edu or Rose Moehring.
- Grief Support for Families of Children With Deaf-Blindness-On line, peer to peer meetings are available for parents who have lost a child. They provide an opportunity to process grief and learn about coping strategies that have helped others. For information, contact Molly Black, Family Consultant for Pennsylvania Deaf-Blind Project. NCDB, NFADB. If interested contact Molly Black or Rose Moehring,
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Meet
Megan Cote
,
Initiative Lead for Family Engagement
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The Importance of Family Support and Networking
National Center on Deaf-Blindness
Family Initiative!
"Parents of children with deaf-blindness face significant, long-term challenges in acquiring the knowledge they need to effectively engage with school and community systems. In addition, they are widely dispersed across the country, making it difficult to find and maintain supportive connections. This national initiative collaborates with state projects and national family organizations to ensure that families have the support they need to partner effectively with education and service providers and create a cohesive network of family leaders across the country."
Megan Cote Family Initiate Lead NCDB. Megan lives in the state of Kansas.
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National Family Organizations
Here are some wonderful family supports you may want to join!
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The NFADB is the largest national nonprofit organization serving families of individuals who are deaf-blind.
What We Do
Through collaboration and partnerships with organizations and agencies in the deaf-blind community, we:
- ADVOCATE for all persons who are deaf-blind of any age and cognitive ability
- SUPPORT for all families of persons who are deaf-blind
- CONNECT families to information, resources and other families for support and learning
- NETWORK & provide training opportunities for families and individuals who are deaf-blind
- COLLABORATE with other organizations to make sure the voices of consumers and families are at the state and national levels
Our website, webinars,
podcasts
,
trainings and online resources provide valuable insight and connections to the deaf-blind world. Become an NFADB member and enjoy all the benefits of our community. We look forward to connecting with you!
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Watch this great video about Deaf-Blind Awareness!
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Learn about deaf-blindness from the experts:
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Meet Patty McGowan, new NFADB President!
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Find out how to join this wonderful organization
here
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The journey of the CHARGE Syndrome Foundation began in 1982, in Columbia, Missouri, with the Deaf-Blind Project in the Division of Genetics, University of Missouri. A group of dedicated professionals worked together to gather valuable informational materials for families and parents who were dealing with the challenge of caring for their children with CHARGE syndrome.
Since those early days 34 years ago, the Foundation has grown significantly, spreading its impact across the US as well as over 25 countries. Its
board and advisors
are comprised of parents and professionals who volunteer their efforts pro bono towards the cause. This allows the Foundation to channel over 90% of funds raised towards directly benefiting individuals and families. The Foundation, including its biennial conference, is an indispensable resource for many of its members – a place to look for information, support, research and access to other parents and professionals.
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CHARGE Syndrome
Sign up for their newsletter to stay informed!
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In 2008, the Usher Syndrome Coalition was founded out of a need to raise awareness for voices unheard. We began as an informal collaboration between a handful of researchers and families devoted to building a network of support for those affected and improving communication between researchers.
The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
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Follow:
Mission is to empower youth with Usher Syndrome and to educate families and school communities.
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Meet Marissa and Audrey, two young ladies with Usher Syndrome. Both students have been featured in the Deaf-Blind Modules!
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Bill of Rights
AER's mission is to serve and empower professionals to deliver standards-based practices that lead to improved educational and rehabilitative outcomes for individuals with visual impairment and blindness. Our vision is to be a dynamic and thriving professional membership community with innovative practices and standards that result in responsiveness, recognized leadership, and improved outcomes for individuals who are blind and visually impaired. In support of both our mission and our vision, the AER Board recently voted unanimously to endorse a newly written Bill of Rights for All Students with Visual Impairments and Their Families. Written by members of AER and COSB, the Bill of Rights has also been unanimously endorsed by the COSB Board. It is available on the AER website and a downloadable version can be accessed here:
Bill of Rights Document
You are encouraged to share the document with parents, colleagues, administrators and others interested in promoting the rights and dignity of children with visual impairments, including those with additional disabilities. If your organization is interested in signing on as an endorser of the Bill of Rights, please contact Janie Blome, AER's Executive Director at
janie@aerbvi.org
.
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This event was developed to bring our community together to encourage learning, leadership, innovation, and building connections as we work to improve the lives of individuals with disabilities and their families.
The collaborative spirit of the Symposium fosters a culture of inclusion, which means healthcare, education, and human services professionals learn alongside self-advocates and their families, employers, and members of the community.
Attendees will be given leading edge information and strategies on the intersection between intellectual disabilities and mental health, self-advocacy and leadership, Native American disability needs and issues, as well as a host of other hot topics such as transition, employment, and community services.
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Life Skills Adventure Camp
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Join us at the Sioux Falls Downtown Library for a series of
FREE
life skills classes this summer! Topics include financial literacy, dining etiquette, first aid/non-certified CPR, basic safety, and online safety.
Content is intended for individuals with a disability ages 14-20. Independent participation is encouraged however, participants may attend with a parent, guardian, or helper if needed for full and active participation.
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-Tuesday July 2nd 1-3pm
Dining Etiquette with Aleta Lindell
-Tuesday July 9th 1-3pm
First Aid/Non-Certified CPR with Julie Dolphin
-Tuesday July 16th 1-3pm
Basic Safety with SDSU Extension 4-H
-Tuesday July 23rd 1-3pm
Online Safety with the Sioux Falls Police Dept.
-Tuesday, July 30th 1-3 pm
Basic Self-Defense (Note different location)
PEAK Performance Training Center
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Rose Moehring, Deaf-Blind Program Director
Rose.Moehring@usd.edu
(605) 357-1437
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Brandy Sebera, Deaf-Blind Program Instructor
Brandy.Sebera@usd.edu
(605) 357-1437
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SD Deaf-Blind Program Grant #H326T180053
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Check Out & Follow
these SD Resources on
FaceBook
for Families of Children who are Deaf/Hard of Hearing, Blind/Visually Impaired, and Deaf-Blind!
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South Dakota School for the Deaf
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South Dakota School for the Blind
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