“The DeafBlind Community:Communication, Trends &

Techniques”

January 24 & 25, 2015First-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, 2015Hosted 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 RemarksThe 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.orgwww.hknc.org

PRESENTATION #2

Common Eye Diseases and Interpreting Strategies to

Describing the EyeDr. Gene Bourquin, CI&CT-r, COMS,

CLVTChristopher Tester, CDI

“The DeafBlind Community: Communication, Trends & Techniques”First-Ever National Online DeafBlind Conference

January 24-25, 2015Hosted 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

StatisticsNational 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%

StatisticsYou 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

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 Acuities

Visual Fields

www.ssc.education.ed.ac.uk

Visual Fields

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

https://www.google.com/search?q=intraocular%3B315%3B232

• Normal intraocular pressure is between 10 and 20.

• These are important number for patients to note, remember, and understand.

Optic nerve

http://www.healthline.com/human-body-maps/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.

Optic nerve disc

http://www.healthline.com/human-body-maps/optic-nerve

‘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.

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)

CataractsWhen 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)

www.mdeyedocs.com

• 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.stlukeseye.com

Presence of black bone-spicule pigmentation is typical of retinitis pigmentosa

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)

http://en.wikipedia.org/wiki/Coloboma

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

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Eccentric viewing

Thank you!Dr. Eugene Bourquin

OandMHK@msn.com

Christopher Tester, CDItester.christopher@gmail.com

PRESENTATION #3

Tactile Maps as Communication Tools

Bryen M Yunashkodemonstration by Julie Somers

“The DeafBlind Community: Communication, Trends & Techniques”First-Ever National Online DeafBlind Conference

January 24-25, 2015Hosted by DB-TIP

Why Mapping?

Navigation

Provide directional information

LayoutProvide 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 Yunashkohello@bryen.com

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