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A University Center for Excellence in Developmental Disabilities Education, Research and Service

Background information:
Federally funded program through the US Dept. of Ed., Office of Special Education Five year grant (2008-2013) Housed at the Center for Disabilities, USD, Sanford School of Medicine since 1999 Staff include: Austin Winberg-Program Director Rose Moehring-Program Coordinator Family Specialist- vacant

Deaf-Blindness & Intervention Strategies

Rose Moehring Program Coordinator rose.moehring@usd.edu 605-357-1437

Deaf-Blindness (a unique disability)

Is a combined hearing and vision loss. Resulting in neither of these primary informationgathering senses compensating for the loss of the other sense. Impact will vary from student to student depending upon a variety of factors (degree of loss/age of onset/etc.). Impact is not additive in nature (blind+deaf=deafblindness), but multiplicative (deafness times blindness).

Deaf-Blindness (a unique disability)

Therefore, sometimes even students with seemingly mild combined losses can be greatly impacted by them. Creates a disability of access to the visual and auditory information about the environment that is necessary for learning, communication, and overall development. Consequently, incidental information (which sighted and hearing students received automatically without effort), is not readily accessible for students with the combined loss.

Deaf-Blindness (a unique disability)

Student must work to attend, gather, and interpret partial amounts of information which is often distorted and incomplete. Without this clear information the brain cannot function normally and learning cannot occur naturally. Results in a difficult time connecting with and understanding the world and experiences significant isolation and limited opportunities for self determination.

Who qualifies for services?

Federal Definition Part B:

Deaf blindness means concomitant hearing and vision impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness. (IDEA, 2004)

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Eligibility Codes for Part B

Mental Retardation Hearing impairment (includes deafness) Speech or Language Impairment Visual Impairment (includes blindness) Emotional Disturbance Orthopedic Impairment Other Healthy Impairment Specific Learning Disability Deaf blindness Multiple Disabilities Autism Traumatic Brain Injury Developmentally Delayed-age 3-9

Who qualifies for services?

Federal Definition Part C: Concomitant hearing and vision impairments or delays, the combination of which causes such severe communication and other developmental and intervention needs that specialized early intervention services are needed.
At Risk (for developmental delays) Developmentally Delayed

Annual Deaf Blind Census

Mass mailings sent in January of each year Surveys sent out to all Special Ed. Directors in an attempt to locate new children Letters sent out to schools/families of current census children hild asking ki th them t to update/verify d t / if i information f ti Information requested based upon December 1st child count Submitted to federal government by May 1st Identity of children/families/school is protected

Deaf-Blind Program Federal Census Coding

Hearing Loss Mild (26-40) Moderate (41-55) Moderately severe (56-70) Severe (71-90) Profound (91 plus) Diagnosed Progressive loss Further Testing needed
(1 year only)

Vision Loss Low Vision (20/70-20/200) Legally Blind (20/200 +) Light Perception Only Totally Blind Diagnosed Progressive Loss Further Testing Needed
(1 year only)

Documented Functional Hearing Loss

Documented Functional Vision Loss

Deaf-Blind Program-Federal Census Other types of losses

Hearing loss: Central Auditory Processing Disorder Auditory Neuropathy Vision Loss: Cortical Vision Impairment

2009 Census information for SD

27 children identified as Deaf-blind Age ranges
Birth to 2 (none) 3-5 (4) 6-21 6 21 (23) of these 6 are of transition age (14 and up)

Most common vision loss low vision/functional loss such as Cortical Vision Impairment Most common hearing loss-profound Best referral source was Birth to Three Program and is now SDSBVI

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Common Causes of Deaf Blindness

CHARGE Syndrome Usher Syndrome I Prematurity Down syndrome

A genetic disorder than can impact several systems... C=coloboma of the eye H=Heart A=Artesia R-retardation (growth/development) G=genitourinary problems E=ears (middle, inner, outer) charge ear
There are many y more, , which are divided into major j and minor categories. g Not all children with CHARGE are impacted in the same way.

CHARGE Syndrome

Usher Syndrome I
A genetic disorder that impacts both hearing and vision Effects on: Hearing The child is born Deaf. The use of a cochlear implant changes intervention. Vision-The child experiences progressive vision loss due to retinitis pigmentosa. Begins with a loss in peripheral (side) vision (tunnel vision) and problems adapting to light/dark. First signs are night blindness. Glare is typically an issue. Ability to use American Sign Language deteriorates and modifications are required. Assistive technology (including magnification may be required). Balance- may use 5 point crawling as an infant. Impedes mobility as vision deteriorates.

Effects on: Vision-coloboma usually on the retina-effects vary from mild to severe vision loss-glare can be an issue Hearing-effects may vary from person to person Balance/sensory issues

Usher syndrome-tunnel vision

Prematurity
Considered premature when born less than 37 weeks gestation. Low birth weight (1000 grams or 2 pounds/3 ounces or less) is often times associated with more complications. Effects on: Hearing-may vary from child to child and may be progressive Vision- vary from child to child - child at risk for eye conditions such as myopia, strabismus, amblyopia and glaucoma

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Down Syndrome
One of the most common genetic birth defects. Effects on:
Vision-More than 60% of children with downs syndrome have vision problems. These may include strabismus, near or far sightedness, nystagmus, y conjunctivitis, j inflammation of the eyelids, keratoconus, and cataracts. Hearing- 60-80% of children with Down syndrome have a hearing loss. This may be due to fluid in the middle ears, nerve damage or both. These children tend to have small ear canals and on-going wax build up or ear infections. http://www.deafblind.com/downmoss.html

Deaf Blind Program Services

Provide technical assistance to families, schools, and service providers. This can include:
On-site consultation Information Dissemination Training

On-site consultations
Visit the child in their home/school/daycare Can address the following needs:
Understanding the child hearing/vision loss and how they access information-simulated experiences Developing needed accommodations Communication Skill Development Assessment (Communication Matrix, The Insite Model, ADAMS LS, the Learning Media Assessment) Instructional Strategies Literacy Assistive technology Transition-transition guide and transition camps

On-site consultations
Instructional Strategies
Routines (develop anticipation) Hand under hand Direct Experience Communication Skill Development (initially geared at developing
the skills of turn taking, imitation, and initiation-Project PLAI)

Touch cues Tangible representations (i.e. object cues) Other sensory cues (smell, sound, taste) Sign Language (co-active/tactile)

Instructional Strategies
To Promote Learning & Literacy
Calendar Systems Experience Books St Story Boxes B Conversational Boxes Active Learning Centers Motor Circuits

Calendar Systems
The term "calendar system" typically involves a device such as a dayrunner, a wall calendar, a Van Dijk calendar box and an representational object to indicate an activity/time piece in the students day Using a calendar program with a child:
provides emotional support and power enhances the development of communication skills
Provides a form, function, and a social means

teaches abstract time concepts and vocabulary

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Calendar Systems- emotional support

It provides the child the security of knowing what is going to happen next. Because of the sensory loss the child experiences, he/she may miss natural cues related to future events. It gives the child things to anticipate. anticipate Looking forward to a fun event can lift the child's spirits and help him stay connected with the world outside himself.

Calendar System-emotional support

It alerts the child that an unexpected change in routine is going to occur. Having the opportunity to prepare for a change often makes the change less stressful. It allows the child to p participate p in decisions about the days events. This gives the child a sense of control in his/her life.

Calendar Systems- Communication skills

Provides the child and you with a mutually understood topic for dialogues. Allows you to attach names to objects/activities, etc. Allows the child to talk about things that have happened in the past or will happen in the future.

Calendar Systems- Developing time

concepts/vocabulary

It provides a clear way to represent the passage of time which helps teach the child beginning time concepts (past, present, future events). It aids in teaching more advanced time vocabulary such as "wait" wait , "later" later , "afternoon" afternoon , "morning morning," "day" day , "night", etc. It provides an individualized time piece for the child that is easy for him to understand. It prepares the child to learn more abstract and traditional time pieces (watches, datebooks, etc.).

Calendar System
Two things must be in place before starting:
Determine childs individualized communication program and establish goals and objectives (i.e. request, reject, initiate a conversation, use object cues, etc.) Determine D i activity i i routines i and d representational i li items Select appropriate time frame
Anticipation calendar Daily calendar Expanded calendar

Example:

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Calendars
Honor students request if possible Include choice making

Experience Books
Experience books are similar to traditional books in that they:
tells a story are tied to specific p language/communication g g allows a child to share, re-create, and review the same story over and over again with many different people, whether at home or at school. Is the basis for conversation and provides a way to build vocabulary.

Experience Books Experience Books

Experience books differ from traditional books in that:
Experience books are created with a specific reader in mind. The story is based on an experience or interest of the target reader. The objects included in the experience book are particular to the experience or interest of the student for whom the book is made. The words written (and, when appropriate, brailled) on the pages, are chosen for a particular student.
Some "Dos" and "Don'ts" for Creating Experience Books By Mary Ellen Pesavento (2009)

Do create a book based on the childs experience, thinking about what is both interesting and relevant l to the h child: hild a favorite routine a favorite outing a favorite toy a favorite person

Dont adapt a commercially available book. Experience stories should: be personalized and relevant to the child reflect a real experience in a child's life, or focus on a child's interest

Experience Books.
DO use vocabulary and develop concepts relevant to the child's own experience. Keep it simple Keep it meaningful DON'T clutter the story with too much information. Focus on the child's experience Include details important to the student

Experience Books.
DO write words (and braille if appropriate) on each page so individuals who are reading the book with i h the h student d use the h same vocabulary each time the story is read. DON'T focus on having the child read the text. Generally, students using experience books connect with i h the h objects bj placed l d on each page.

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Experience Books.
DO use objects relevant to the child's experience. In a book about mealtime, a child who uses a spoon may have a spoon on the page. A child who is tube fed however fed, however, may have a piece of surgical tubing. Use objects the child will recognize and that represent ideas or concepts from the child's perspective.

Example: Questions????

Dont use miniature objects. Focus on the childs experience. Determine D t i what h t th the child is interacting with during the experience.

Story Boxes
Are a collections of items that are mentioned in a story or book. They represent key items presented in the story. Provides concrete, concrete hands on items to help make the story accessible. Exploration of items helps the child participate in the story as well as assist in building concepts, gathering information and increasing ones understanding of the world.

Story Boxes.
Three key steps to making a story box: Choose a story Select and construct the items to be used with the story Read the story while assisting the student in identifying with the object

Example: Questions????

Conversation Boxes
Often children will participate in exciting activities at home or school and not be able to share this information with others. Conversation boxes can be used to select objects experienced p in such activities, , taking g into consideration what parts of the activity the child identifies with and finds most interesting. This provides the child an opportunity to share this excitement and talk to others about the activity afterwards.

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Conversation Boxes

(Steps)

Conversation Boxes..(Steps)
Assist the child in exploring the conversation box and having a conversation. When the child removes an item from the box the communication partner uses the pre-written phrases to talk to the child, by asking questions, making comments, and so forth. The child leads the conversation by being in charge of the items in the box. Use the conversation box over and over to have meaningful conversations with the child.

Observe the child during various activities to determine those that are exciting or interesting to the child. Identify those topics of conversation Through the activity, observe the child to plan the objects you will need as symbols. You will also plan the conversational phrase that will accompany each object. Write the conversational phrases on a small sturdy card that can be attached to the lid of the box-write what you think the child may be experiencing.

Example: Questions????

Active Learning Centers

Are mini workstation/environments in the classroom that can take on many different forms and teach a multitude of important skills. Are designed to allow special needs children to learn at their own developmental level. They provided necessary modifications to allow the child to access information through their preferred sensory channels (visual, auditory, tactile, smell, movement). They are developed based upon the likes and interest of the child.

Active learning centers

Examples: Dress up or pretend play corner Math center (big/little blocks, heaving/light balls, containers full/partially full of clay)-Use of a scale to weight g items. Reading (several different colorful/engaging stories, as well as books that appeal to the senses)-Use of story boxes, experience books and conversational boxes.

Active learning centers

Language arts (variety of activities for matching little toys with letter cards or a simple letter tracing activity with colored pencils/colors). Music ( (different instruments or a CD p player y with different kind of musical songs/finger plays. Coloring and simple crafts could also be used). Fine Motor skills (pouring liquid, transferring small items form one bowl to another with tongs or cutting paper with safety scissors.

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Active learning centers

Gross Motor Skills-Motor circuit-structure the environment so child is able to go from one motor activity to another in a specific area. For example:
Climb stairs Down slide On trampoline Through tunnel

Other sensory workstations can contain warms/cold items, squishy balls or slimy clay, sand tables, rough and smooth toys, and sandpaper art. Healthy y snack stations

Improves coordination Allows you to determine childs memory abilities

Another form of Active Learning Center

(Lilli Nielson). Key concepts are:

Active Learning Center

Do not interrupt the child by taking to them while they are playing. Talk to them when they stop and want to engage you. Slow down when y you interact and play p y with the child. First, allow them time to explore on their own, then wait for child to take a turn. Let the child have control of their own hands. Use hand under hand, place toy near their arm or leg, make a noise with he object.

Based on the premise that all children learn best through play.
We must know what the child can do and what they like. Provide child with more activities and objects that are similar to the ones they like. Give opportunities to practice and compare. Provide a few materials and activities that are slightly higher to challenge the child so they dont get bored. (may model how to use-dont expect imitation).

Active Learning Center

Dr. Nielsen developed model environments/ strategies/equipment to enhance learning such as: Little Room Resonance board Position boards-attach items and put in childs reach Tipping board-items hung to encourage batting/feeling Vest-attached objects Scratch board-with various textures Attribute trays-group of materials that share a common characteristic

Little room

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Little Room -Seven Stages in Sequence of Movements:

First Stage: Accidental movements-beginning awareness of objects Second Stage: Conscious pushing or touching of objects j Third Stage: Grasping and letting go followed by grasping and keeping objects

Little Room
Fourth Stage: Immediate repetition of an activity Fifth Stage: Varied handling of an object Sixth Stage: Infants listens at the same time they perform a kinesthetic-auditory p y activity y or they y begin g to perform a tactile search of the object when a kinesthetic-auditory game was displayed

Little Room
Seventh Stage: Infants performed a quick search for one object while displaying a tactile search for another object; the aim is clearly to compare the tactile qualities of two objects. They perform different sounds with the same object or with two objects to compare the sounds. In addition they quickly touched or grasped several objects, one after another as if to compare the position or to assure themselves of the presence of the objects. In this stage, the infant also begin to play games and engages in a sequence of specific actions.

Vest/jumper

Scratch board (scratch, pull, grab)

Tipping Board

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Multi-functional activity table

Keys to Literacy (Barbara Miles) The child needs to:

Observe significant people in their life reading and writing for a variety of purposes. Be engaged in meaningful conversations during literacy experiences. Have accessible literacy materials based on the sensory channels available to them Have literacy be connected to their experiences and interests. Have regular opportunity for independent use of reading and writing materials.

Training.... Questions???????
Small scale trainings:
Vision loss and classroom accommodations Hearing loss and classroom accommodations Syndrome specific training Cortical vision impairment Communication skill development for children who have multiple disabilities (including Deaf-Blindness) Tactile sign language Use of the little room Communication Matrix (assessment tool) Literacy/Concept Development Use of the intervener

What is an intervener?
A one to one service provider with specialized training and skills in Deaf-Blindness Provides a bridge to the world for a student who is Deaf-Blind Helps the student gather information information, learn concepts and skills, develop communication and language, and establish relationships that lead to greater independence. A support person who does with, not for the student.

The role of an intervener is threefold

1. Facilitates access to the environmental information that is usually gained through vision and hearing, but which is unavailable or incomplete to the student who is Deaf-Blind 2 Facilitates 2. F ilit t the th development d l t and/or d/ use of f the th students receptive and expressive skills 3. Develops and maintains a trusting, interactive relationship with the student who is Deaf-Blind that promotes social and emotional development and well being.

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Training.... Trainings.
Large Scale Trainings
Council for Exceptional Children Conference Lakota Nations Conference Centered Sponsored Training (NCDB co-sponsors)
Deaf-Blindness Communication skill development Cortical vision impairment CHARGE syndrome. Instructional Strategies

Also, serve as link to training resources such as:

Intervener training for Para Educators (Ski Hi) HKNC transition program for students Augustana summer enrichment experience SDSBVI transition week Service to the Blind and Visually Impaired

Information Dissemination
Deaf Blind Program list serv.
NCDB (National Consortium on Deaf Blindness) Helen Keller National Center Perkins School for the Blind (webcast) Texas School for the Blind

Resources:
National Consortium on Deaf-Blindness: http://nationaldb.org Helen Keller National Center http://www.hknc.org Perkins School for the Blind http://www.perkins.org Texas School for the Blind http://www.tsbvi.edu CHARGE syndrome foundation : http://www.chargesyndrome.org Calendars for students with multiple impairments, including DeafBlindness by Robbi Blaha (tsbvi)

Deaf-Blind Program website (topic pages)

USD, Sanford School of Medicine, Wegner Library:

Questions!

How to make a referral?

Deaf-Blind Program Center for Disabilities 1400 West 22nd Street Sioux Falls, South Dakota 57105 Phone - 800-658-3080 (Voice/TTY) or 605-357-1439 E-mail - cd@usd.edu
http://www.usd.edu/medical-school/center-for-disabilities/db-referral.cfm

How to make a referral-forms

Referral form/contact information -starts the process Parental Consent:
Release of information Informed consent Needs assessment

Agency Consent:
Consent form Needs assessment

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