“The DeafBlind Community: Communication, Trends & Techniques” January 24 & 25, 2015 First-Ever Online InterNational DeafBlind Conference DAY 1 PRESENTATION MATERIALS
PRESENTATION #1
State of the DeafBlind Community Christopher C. Woodfill
“The DeafBlind Community: Communication, Trends & Techniques” First-Ever National Online DeafBlind Conference January 24-25, 2015 Hosted by DB-TIP
Objectives • • • •
Participants will appreciate the great diversity of the DeafBlind community. Participants will learn about local, state, national and international organizations for, of and by the DeafBlind. Participants will understand the current state of the global DeafBlind community. Participants will consider the possible future status of the DeafBlind community.
Outline • • • •
Variety of the DeafBlind community DeafBlind organizations Present state of the DeafBlind community Future state of the DeafBlind community
DeafBlind Community • • • • •
Etiology Culture Education Employment Communication
DeafBlind Etiologies • • • • • • • •
Usher Syndrome Types I, II and III CHARGE Syndrome Congenital Rubella Syndrome Norrie Syndrome Neurofibromatosis Type 1 and 2 (NF1 and 2) Traumatic Brain Injury (TBI) Tumors Eye-related diseases (Macular Degeneration, Diabetic Retinopathy, Glaucoma) and/or eye injury in Deaf individuals. • Hearing loss, often of unknown origins or excessive noise in hearing blind individuals. • Advanced age
DeafBlind Culture • Variations in cultural identities within the DeafBlind community reflect the individuals’ journey into DeafBlindhood from their primary or original cultures. – Culturally Deaf, DeafBlind – Culturally Hearing, DeafBlind – Culturally DeafBlind
DeafBlind Education • Educational attainment of DeafBlind individuals ranges from rudimentary education all the way to Post Doctoral education. • There are few schools exclusively for the DeafBlind children. • All states and territories in the United States have DeafBlind Project for Children that provides Technical Assistance to families and educators of DeafBlind children.
DeafBlind Employment • DeafBlind individuals have a great variety of jobs such as lawyers, teachers, counselors, artists, chefs, carpenters, mechanics, electricians, stockers, janitors and many others. • However, the unemployment rate is very high within the DeafBlind community. • DeafBlind individuals can do almost any jobs as long as appropriate and effective accommodations are provided.
DeafBlind Communication • • • • • • • • •
Restricted Field Signing Tracking Tactile Sign Language Pro-Tactile Print on Palm Fingerbraille Assistive Listening Devices (ALDs) Communication books/cards Communication technologies
DeafBlind Organizations • World Federation of the DeafBlind • American Association of the DeafBlind • Approximately 50 National level associations of the DeafBlind around the world. • Numerous local/state level associations/clubs/leagues of the DeafBlind in the United States and in other countries around the world.
Present State of the DeafBlind Community • The DeafBlind community is diverse. • Usher Syndrome is the largest group in the active DeafBlind adult population followed by Congenital Rubella Syndrome (CRS) and CHARGE Syndrome respectively in the United States. • Among the under 21 DeafBlind population in medically advanced countries, CHARGE Syndrome is the largest group followed by Usher Syndrome. CRS has died out in countries with advanced medical care. • In countries with weak medical care, CHARGE Syndrome is very rare since the individuals born with it generally die shortly after birth without medical intervention. In those types of countries, CRS and Usher Syndrome are the largest groups.
Future of the DeafBlind Community • Timeline: 15-25 years in the future (2030-2040) • In countries with advanced medical care: – Congenital Rubella Syndrome will start to die out in active adult DeafBlind population. – Cures and effective treatment will be found for retinal disease in Usher Syndrome. Individuals with Usher Syndrome will no longer be a significant part of the DeafBlind population. – Individuals with CHARGE Syndrome will form a majority of the active adult DeafBlind population.
Future of the DeafBlind Community • In countries with poor medical care: – Congenital Rubella Syndrome will continue to be a significant part of the DeafBlind population. – Individuals with Usher Syndrome will not get treatment and will therefore remain in the DeafBlind population. – Individuals with CHARGE Syndrome will die shortly after birth without medical intervention and therefore will not form a significant part of the active adult DeafBlind population.
Closing Remarks The DeafBlind community is diverse and evolving. The DeafBlind community and those working within it should adjust and respond to the diversity and evolution of the community.
Thank you! Christopher C. Woodfill Chris.Woodfill@hknc.org www.hknc.org
PRESENTATION #2
Common Eye Diseases and Interpreting Strategies to Describing the Eye Dr. Gene Bourquin, CI&CT-r, COMS, CLVT Christopher Tester, CDI “The DeafBlind Community: Communication, Trends & Techniques” First-Ever National Online DeafBlind Conference January 24-25, 2015 Hosted by DB-TIP
a process model for deaf-blind interpreting
Legal Blindness •
Visually Impaired – persons who have some difficulty seeing with one or two eyes even when wearing glasses
•
Legally Blind – 20/200 or less in the better eye with best correction AND/OR less than 20 degrees of visual field
•
Blind (no light perception) – none or nearly no light perception
An Eye Exam • Eye exams are a regular part of many deaf-blind people’s lives. • Reviewing a typical exam can aid us in understanding how to sign with or interpret for deaf-blind people
• • • • •
History External examination Internal examination Reading eye chart Optic nerve and intraocular pressure • Visual fields
An Eye Exam • There are eye conditions and diseases that are common to the general population and to DeafBlind people in particular. Here are some examples. • • • • • • • • •
Optic nerve Glaucoma Fluids & drainage IOP glaucoma Lens Cataracts Retina retinitis pigmentosa macular degeneration
• • • • • •
Coloboma istory External examination Internal examination Reading eye chart Optic nerve and intraocular pressure • Visual fields
Statistics National Statistics (0-21): 9387 (2011) •CHARGE syndrome - 5.92% •Usher syndrome - 2.66% •Congenital Rubella - 1.29% •Prematurity - 11.84% •Undetermined - 17.57% •Cognitive Delays - 47.76%
Statistics You will probably meet and work with more people with concomitant vision and hearing losses than you think •Adults: core 100,000+ •Total 1 to 4 million •Usher syndrome - 45,000+ •CHARGE - unknown •CRS - unknown •Other causes - unknown
Visual Acuities Presents as . . . • blurry vision • far and near distances • difficulty making out details • hard time following fast moving objects
Visual Acuities
20/70
20/200
Visual Fields
Visual Fields
www.ssc.education.ed.ac.uk
The Eye Exam
http://www.healthline.com/human-body-maps/optic-nerve
Checking for Glaucoma • Anterior Chamber • Angles • IOP • Optic nerve
Anterior chamber and fluids The anterior chamber (AC) is the fluid-filled space inside the eye between the iris and the cornea's innermost surface. Aqueous humor is the fluid that fills the anterior chamber. en.wikipedia.org/wiki/Anterior_chamber_of_eyeball
Glaucoma
www.mdeyedocs.com
Drainage
www.fpnotebook.com
Intraocular pressure • Normal intraocular pressure is between 10 and 20. • These are important number for patients to note, remember, and understand. https://www.google.com/search?q=intraocular%3B315%3B232
Optic nerve The optic nerve is located in the back of the eye. It is considered to be in the central nervous system. It transfers visual information from the retina to the vision centers of the brain. Our blind spot is caused by the absence of specialized photosensitive cells, or photoreceptors, in the part of the retina where the optic nerve exits the eye. http://www.healthline.com/human-body-maps/optic-nerve
Optic nerve disc ‘Optic Disc’ is frequently used to describe the portion of the optic nerve clinically visible on examination. The ‘optic nerve head’ is very much a three dimensional structure which should ideally be viewed stereoscopically.
http://www.healthline.com/human-body-maps/optic-nerve
Optic nerve disc This pale center is called the cup. The vertical size of this cup can be estimated in relation to the disc as a whole - “cup to disc ratio�. A cup to disc ratio of 0.3 is generally considered normal, and an increased cup to disc ratio may indicate a decrease healthy neuro-retinal tissue and hence, glaucomatous change. http://www.optic-disc.org/tutorials/optic_disc_basics/page12.html
Checking for Cataracts
The lens
Crystalline lens The crystalline lens is a transparent, biconvex structure in the eye that helps to refract light to be focused on the retina. The lens, by changing shape, allows focus on objects at various distances, thus allowing a sharp real. This is similar to the focusing of a photographic camera via movement of its lenses. The lens is more flat on its anterior side than on its posterior side. http://en.wikipedia.org/wiki/Lens_(anatomy)
Cataracts When the lens gets older or pressured it becomes thick and yellow. It may have to be removed and replace with a prosthetic
• A cataract is a clouding of the lens of the eye. • Many conditions cause earlier cataracts, such as CRS, Us, & glaucoma.
Checking for Retinitis Pigmentosa & Macular Degeneration
The retina
Retina “The retina is the light-sensitive layer of tissue at the back of the inner eye. It acts like the film in a camera. Images come through the eye's lens and are focused on the retina. The retina then converts these images to electric signals and sends them via the optic nerve to the brain. The retina is normally red due to its rich blood supply . . .� http://www.nlm.nih.gov/medlineplus/ency/article/002291.htm
Retinitis Pigmentosa (part of Usher syndrome) • • • •
Symptoms often first appear in childhood; severe vision problems do not develop before early adulthood. Decreased vision at night / low light Loss of side (peripheral vision, causing "tunnel vision" Loss of central vision (in advanced cases) www.mdeyedocs.com
Presence of black bonespicule pigmentation is typical of retinitis pigmentosa
www.stlukeseye.com
Mid-Stage RP mid stage (Bone spicule-shaped pigment deposits are present in the mid periphery along with retinal atrophy, while the macula is preserved although with a peripheral ring of depigmentation. Retinal vessels are attenuated.) http://en.wikipedia.org/wiki/Retinitis_pigmentosa#mediaviewer/File:Fundus_of_patient_with_retinitis_pigmentosa,_mid_stage.jpg
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Macular Degeneration (associated with aging) Macular degeneration, often age-related (AMD or ARMD), is a condition that usually affects older adults and results in a loss of vision in the center of the visual field (the macula) because of damage to the retina. In the dry form, cellular debris; the retina can become detached. Wet form, which is more severe, blood vessels grow up from the choroid behind the retina, and the retina can also become detached.
macular
Fine central vision
www.medindia.net
Amsler grid
http://medical-dictionary.thefreedictionary.com/Macular+Degeneration
Coloboma
(part of CHARGE syndrome)
A coloboma is a hole in one of the structures of the eye, such as the iris, retina, choroid, or optic disc. The hole is present during early stages of prenatal development, fails to close up completely before a child is born. The classical description in medical literature is of a key-hole shaped defect http://en.wikipedia.org/wiki/Coloboma
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Eccentric viewing
Thank you! Dr. Eugene Bourquin OandMHK@msn.com
Christopher Tester, CDI
tester.christopher@gmail.com
PRESENTATION #3
Tactile Maps as Communication Tools Bryen M Yunashko demonstration by Julie Somers “The DeafBlind Community: Communication, Trends & Techniques” First-Ever National Online DeafBlind Conference January 24-25, 2015 Hosted by DB-TIP
Why Mapping?
Navigation Provide directional information
Layout Provide detailed areal description of objects, walkways, and people locations. May be multi-layered, multi-dimensional.
Real-Time Feeding Use Mapping in real-time to describe activity (e.g. movements on stage.)
Story-Telling Using mapping to describe an event or an experience in conversation.
If you're in Chicago... “Falling Into the DeafBlind World”
February 8, 2015 @ Anixter Center Full day hands-on workshop (.8 CEUs) Visit http://goo.gl/2uw4Tn for more information.
Thank you! Bryen Yunashko hello@bryen.com
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