The Sooner the Better

The Sooner the Better

INDBS Fact Sheets

Combined Vision and

Hearing Loss:

Whatdoesitmean?

ThePopulation

Inthemidto late1960’s,morethan3,000 childrenwerebornintheUnitedStatestomotherswhohadRubella(GermanMeasles) duringpregnancy.Thisaffectedboththevision andhearingof thesechildrenandtheywerethe first large group to be identified as “deafblind.”

WhileRubellaisnolongeramajormedicalprob- lemintheUnitedStates,childrencontinuetobe identified with a combined vision and

hearinglossduetoincreasedsurvivalofprematureandlo

birthweightinfan aswellaspre- natal,post-natal, andcongenital conditionsthataffectvisionand hearing.

Althoughtheterm deafblindimpliesacomplete absenceof hearingandsight,inreality,it refers tochildrenwithvaryingdegreesofvisionand hearinglosses.Thetypeandseverityof losses differfromchildtochild.Evenchildrenwhohave thesameconditioncausingtheirdeafblindness willhaveverydifferentamountsof usablevision andhearingandvarywidelyinability. Inaddition,mostchildrenwhoaredeafblindhave otherdisabilitiesandmanyhavecomplexhealth careneeds.However, despitethebroad

versityofthe opulation,what thesechildren haveincommon

istheneedforspecialized instructionto

meettheirunique learningneeds.

TheContinuumofDeafblindness

The most well-known person associated with the term “deafblindness” is Helen Keller.An infectionat18monthsof ageleft hercompletelydeafandtotallyblind.However,shereally only represents a small percentage of those who are classified as deafblind – about 6%.

There are actually five categories of vision and hearing impairments.All children who are deafblind can fall anywhere along the continuum of the five categories.The categories are:

•VisuallyImpairedand Deaf/Hard of Hearing withVisionbeingtheprimarydisability

•VisuallyImpairedand Deaf/Hard of Hearing withHearingbeingtheprimarydisability

•DeafandVisuallyImpaired

•Blindand Deaf/Hard of Hearing

•DeafandBlind

TheDefinition

Boththefederalgovernmentand the state of Indiana have defined acombinedvisionandhearing lossusingtheterm “deafblindness.” Both definitions aresimilarandinclude recognitionof theuniquenature of this population.The definitions basicallystatethatapersonis

considered to be deafblind if:

He/shehasbothvisionandhearing impairments,thecombinationof which createssuchseverecommunicationand otherdevelopmentalandeducational problemsthatthestudentcannotbe accommodatedinspecialeducation programssolelyfor studentswithhearing orvisualimpairments.(1999IDEARules andRegulations300.7(c)(2);2002Indiana AdministrativeCode511IAC7-17through

7-31).

This definition encompasses a complete range of hearingandvisionlossesfrom mildto profound andfrom lowvisiontototalblindness.In addition, oftenachildmayhaveanimpairmentthat only effectsoneeyeoroneearorisdiagnosedwith

aprogressivelossthat currentlymaynotbea problem.

While the meaning of the definition has remained consistent,theterminologyusedto describeit haschangedovertime,dependinguponthe audience.Currently, thefederalgovernment

has chosen to use the term “deafblindness” to describecombinedvisionandhearinglosses. InthestateofIndiana,dualsensoryimpairment is the term used in the legal definition and, fre- quently,peoplewillreferto dualsensorylosses. “Deafblind” is often very difficult for families to hear.The term “dual sensory impairment” is oftenmisunderstood.As aresult,talkingabout

combinedvisionandhearinglossallowsusto be bothmoredescriptiveoftheconditionandmore “family friendly.”

AdditionalDisabilities

inChildrenwhoareDeafblind

It is important to remember that over 90% of thechildrenreportednationallyasdeafblindhaveoneormoreadditionaldisabilities. Thefollowingwerereportedamongchildren with one or more additional disabilities:

66%cognitive disability

57%physical disability

38%complex health care needs

9%behavior challenges

30%other

Data from Killoran, J. (2007).The national Deafblind child count: 1998–2005 in review. Monmouth, OR: NTAC.

ReportedVisionandHearingLossinChildrenIdentifiedasDeafblind

VisionLoss

17%totally blind or light perception only 24%legally blind

21%low vision

17%cortical vision impairment 21%other

HearingLoss

39%severe to profound hearing loss 13%moderate hearing loss

14%mild hearing loss

6%central auditory processing disorder 28%other

Data from Killoran, J. (2007).The national deafblind child count: 1998–2005 in review. Monmouth, OR: NTAC.

SometimesChildrenwhoare

DeafblindareDifficulttoSpot...

.

Itisclearthatnosingleportrait

canbepaintedto representa typicalchildwithdeafblindness. Childrenwhoaredeafblindare asvariedasthenumber reported.Thephotographs

andstoriesbelowillustrate thisdiversity.In addition,alist ofsomeofthemostcommon

causesof combinedvisionand hearinglossesalsoisincluded.

ThisisMelissa...

Say“Hi!”toAllie..

Allieis3yearsold.Attheageof1,testsshowedthatshehadamoderatesenso-rineural hearing loss. She also has a coloboma in each eye; however, it has not been determined how much vision

shehas.Inaddition,Alliehasblockagesin her nasal pas-sages, a heart defect and has alwaysbeensmallforherage.ShehasCHARGESyndrome. Allie is considered deafblind.

Melissais18monthsold. She has had chronic inner ear infections and nowhasasevere

sensorineural hearing loss. Melissa also has cerebral palsy, seizure disorders, impaired vision due to a diseasedretina,andglobaldevelopmentaldelays.Al-though it wasn’t apparent atbirth,shehadCytomegalovirus (CMV). Melissaisdeafblind.

CommonCausesof Deafblindness:

CHARGESyndrome Corneliade LangeSyndrome Cridu chat Syndrome

DownSyndrome HurlerSyndrome Klippel-FeilSequence

LeberCongenitalAmaurosisTrisomy13

Trisomy18 UsherSyndrome

CongenitalRubella CongenitalToxoplasmosis Cytomegalovirus(CMV) FetalAlcohol Syndrome Hydrocephaly Microcephaly

Asphyxia Encephalitis Infections Meningitis

SevereHeadInjury Stroke

Prematurity(e.g.,LowBirth Weight,RetinopathyofPrematurity)

MeetJosh...

Joshwasbornat23weeksandweighed1lb.,4oz.Hehas a profound hearing loss.Joshhasnovisionin his left eye due to a detached retina; however, heseemstohavesomeusable vision in his right eye.Now,atayearold,hedoesn’t crawl, but scoots on his back. Josh also is deafblind.

TA, Training, & Support

Families and educators of infants, toddlers and childrenwhoaredeafblindneedto haveaccess totrainingandsupport.Eachstatehasafederally funded technical assistance project specifically designedto improveeducationalservices, provideopportunitiesfortraining,andtohelp supportfamiliesof childrenwhoaredeafblind. For more information or to request services in Indiana contact:

IndianaDeafblindServicesProject Blumberg Center, COE/University Hall 401 N. 7th St, Room 009W

Terre Haute, IN47809

1-800-622-3035

Karen Goehl, Project Director isaPoff,ProgramCoordinator

Thispublicationwaspreparedusingvarious resourcesbyLisaPoffwiththeIndiana DeafblindServicesProjectandBarbara Purvis at the National Consortium on DeafBlindness (NCDB). However, we would specifically like to thank the National ConsortiumonDeafblindness,asmuchof the informationcontainedinthisdocumentcan befoundintheirChildrenWhoAre

Deaf-Blind,PracticePerspectives - HighlightingInformationonDeaf-Blindness, Number 2 (November 2007) publication.To seetheentiredocumentpleasegoto

Key Points to Remember

•Deafblindnessisvariedandcomplex.

•Childrenwithdeafblindnessareas diverseasthenumberof children reported.

•Early identification and intervention are

essential.

•Childrenandyouthwhoaredeafblind oftenhaveotherdisabilities.

•Trainingandsupportareavailable throughfederallyfundedtechnical assistanceprojectsineachstate.

Resources

Killoran, J. (2007).The national deaf-blind child count: 1998–2005 in review. Monmouth,

OR: NationalTechnicalAssistance Consortium forChildrenandYoungAdultswhoareDeafBlind(NTAC),Teaching Research Institute, Western Oregon University.Available at:

Kimberling, W. J. (2004). Genetic hearing loss

associatedwitheyedisorders.In H.V.Toriello,

W. Reardon, & R. J. Gorlin (Eds.), Hereditary hearing loss and its syndromes (pp. 126–165). NewYork: Oxford University Press.

Brown,D.,Bates,E.(2005,Spring).Apersonal viewof changesindeafblindpopulation, philosophy,andneeds.DeafBlindPerspectives, 12(3), 1–5.

For additional resources and information

aboutdeafblindness,goto

Thepurposeofthe IndianaDeafblindServices Project’s(INDBS)TheSoonertheBetterFactSheetsisto increaseknowledgeof earlyinterventionandearlychildhoodeducationpersonnel, families,medicalandcommunityagencypersonnelaboutfactorsrelatedto combinedvision andhearinglossinyoungchildren.